Genetically Enhanced

Apraxia & Literacy

2012-02-11T01:01:00.000-08:00

Sheridan loves to read. Loves his letters, loves his books. He asks us to read books to him more times in a day than I can count. He pulls out books to read on his own - he can often be found sitting in the middle of books spread out around him on the floor (he knows the stories and retells them to read them).

And research shows that children with Apraxia of Speech typically struggle (a lot) with reading and writing.

So, we foster Sheridan's love for all things reading any chance we get. He's hungry for it. So why not give him plenty of opportunities?

This is a quick video of a recent speech session where his SLP uses his Kauffman cards with sight words to form a simple sentence ("I have..."). We're also using "I see" and "I want." We will slowly expand the use of sight words to help him with both reading and expanding his sentence usage (lately he's been doing great stringing up to six words together, e.g., "Daddy, I want more water please."). I should note here that Sheridan has a decent number of sight words, but in speech we're focusing on those necessary for building sentences.

What's interesting to me, I noticed when I looked at a couple of these videos that Sheridan has more speech errors on these Kauffman cards when used in a sentence, than when he does them as simple flashcards. In other words, he can say the words more clearly and more consistently when he does them individually, than when compared to using them in a longer string of words. Which in a way makes sense, given that the more a child with Apraxia says, the more errors you tend to see. And if you haven't seen previous videos go here to get some background on Apraxia and Sheridan's progress.

Check out Sheridan rockin' the sight words, sentences, and Kauffman cards. I love that speaking voice of his!

Joy

2011-12-23T21:54:00.000-08:00

Sending you wishes for a 2012 full of...

love

warmth

joy

peace

wonder

security

comfort

and laughter.

Happy New Years from The Lindseys.

Oh, and here's a shameless dump of more cute pictures of little man and the fam.

Sheridan's Debut Performance

2011-12-14T00:01:00.000-08:00

Sheridan's class hosted a Holiday Tea & Sing... the children sang about 10 holiday songs (plus three songs about the geography they are learning: the continents and the countries in North & South America). Two songs were in Spanish. After the singing, everyone enjoyed the cookies the children baked in class.

The Program

This was Sheridan's debut musical performance. I mean, c'mon. This is big, y'all. He's in his element, right?! His friends, music, singing, gestures for each song. He is going to rock. it. out.

Eat your heart out. That's right. He busted out with a tie and matching chucks.

He's been singing all of these songs nonstop. Every day. It took me a couple weeks to figure out what he was singing - Up on the Rooftop is definitely his favorite, followed by Cascabel and La Pulga de San Jose (which he actually calls La Guitarra because part of the song is about playing a guitar).

Yep, you read that correctly. Sheridan is singing songs in Spanish. Don't even get me started on how proud I am of him...

So the moment arrives. The audience is standing room only (at least 70 adults in the room?), everyone is hushed, the children walk in and take their places...

And Sheridan... just... sits there.

Sitting in the front, fourth from the right.

When I say he sat there, I mean that's all he did. You could tell he was just taking in the sea of people in front of him. And he watched his classmates sing around him.

Originally, we tried to hide and make sure he wouldn't spot us in the crowd, thinking he might be distracted. But then Gary felt that Sheridan was trying to find us in the mass crowd of people. So, we stood up and made sure Sheridan could see us singing along. He got excited. Gave us a few waves.

I love his waves here...

And you know what? I'm very proud of him for sitting with his classmates through the entire show. Because other kids were dropping like flies. Some of the other children either had to go sit down with their families or a teacher, and a couple refused to even be part of the concert.

His teachers were proud of him, too. After the concert, one of the moms (she volunteers in the classroom one day a week) said she's seen all the children practicing for weeks, and she pointed at Sheridan and smiled and said, "I've seen you sing these songs! I know you can sing them." Sheridan laughed.

As soon as we got to the cookie part of the evening he started singing to the whole room full of people. Stinker.

Grandpa & Nanny Airplane were there. So was Nonna, but I didn't get a picture :(

Some pictures of Sheridan and his classmates...

It's a big decision: the cookie, or the pretty girl?

How about both?

I definitely need to write a post about Sheridan's school. He loves it. We love it. They love him. Can you tell?

I'll post something soon...

Discussion of the Owies

2011-12-13T10:04:00.000-08:00

Sheridan's open heart surgery to repair his four congenital heart defects was back in May 2010, a full 18 months ago. His recovery was quick and amazing. And he never really paid much attention to his resulting scar, until now.

His Becca's dad (Mr. Jimmy) had his third open heart surgery about a month ago. One of Mr. Jimmy's first requests upon his release from the hospital was to see Sheridan (Sheridan really is a true member of their family). And Sheridan saw Mr. Jimmy's "zipper." And the two of them had a conversation about each other's "owies." So, for the first time, he had an interest and cause to talk about his scar.

I can't explain why, but I'm really happy that Sheridan is talking about it. Maybe it's his awareness that he's not the only one who has a scar. Maybe it's because I get to tell him what an amazing little man he his - a true Big Boy - that he had surgery and was tough and now he's ok. Better, even.

The only drawback to this new-found interest: Sheridan is intent on finding an owie on everyone now. Ladies, be warned. He will try to pull your shirt down to look at your chest. He's only looking for a scar, though... I think.

I showed him my scar from a laparoscopic surgery I had on my stomach years ago. He likes to talk about "Mama's owie" and "Daddy's owie" (remember Gary's life-saving surgery on Sheridan's second birthday?) and his own owie. It's interesting to see how important it is to Sheridan that we all have owies, even if they are different. Almost like it's comforting, but also because he really likes to be just like us.

I'm curious to see over time how he reacts to (or doesn't care about) his scar. It was one of my biggest concerns before his surgery, and even after meeting a young man who was proud of his scar, I was still concerned for Sheridan. Now I don't give it a second thought, even though it is quite large and noticeable (he developed a pretty significant keloid). Check it out for yourself in this video I posted six months ago.

He's definitely gonna rock that scar, his girlfriends will think he's SO cool for having it, and he'll take comfort in knowing he's not the only person with one.

My Little Drummer Boy

2011-12-03T21:10:00.001-08:00

I'm not going to lie... these are not Sheridan's best (most intense, non-stop, feverish) drumming moves. But you get a little flavor of it. And his singing. There's a bit of a lull in the middle (I need to teach him to keep his eyes on the road), but it's worth watching to the end for his rockstar dismount.

Independence = Responsibility

2011-12-01T16:23:00.001-08:00

That's right. In this house, if you are a fiercely independent three-year-old boy, you get added responsibilities. Because that's just the way things work in life, right?!

With every new step toward independence, we've always been ready to bump up Sheridan's level of participation around the house. Even things as simple as:

Hanging up his coat when he comes home. We had this "dead" space in his room, it's too small or in-the-way to put furniture or anything else next to his door, so about a year ago I bought those easy-remove hooks and put them at toddler level. Now, whenever it's time to go outside, he grabs his own coat. And when he takes it off, he hangs it up himself.

Putting his books on his shelf. Sheridan has a small bookshelf in the living room (we try to rotate the books regularly, meaning I bring books from his big bookshelf in his room out to the living room so he has easier access to them - note to self, I need to rotate them more frequently). This small bookshelf allows him to see everything, and he's really good about grabbing a book (or 2 or 3) and putting them back when he's done.

Putting his hats away. We have limited space in our house, so that means a small corner of the bookshelf in his bedroom doubles as his hat shelf. This isn't really about pure neatness, it's just about Sheridan knowing where his hats belong, and he can get one (and put it away) all by himself.

Setting the table. Sheridan loves to help set the table. He grabs the plates from the cupboard one-by-one, puts them on the table, and puts out the silverware, too. And this is a prime example of an activity that requires that we, as parents, need to ~~get over it~~ let go. Yes, Sheridan has broken a few bowls and a couple plates by accidentally dropping them. But these are the kind of activities and skills that toddlers are hungry for! He wants to explore, and do what we do, and copy us, and try everything. If we told him no (out of legitimate concern that he might break something), not only does it mean it will take him longer to learn (because he gets no practice), but I also think that by the time he's "old enough" to do it, he won't want to (and we'd have to "force" him to help). As far as Sheridan is concerned, helping us is a privilege, one he is eager to do. So, it's worth a few broken dishes to me. Or try plastic for a while!

This is the most settings Sheridan has ever done. He set our Thanksgiving dinner table all by himself. After some negotiation Gary finally received utensil so he didn't have to eat with his hands.

Sweeping. Yes. Sweeping. Whenever we sweep, Sheridan gets excited and asks to help. So I found a toddler-sized broom online and we pull it out whenever he wants to help. Which typically means that he sweeps the pile of dirt you've created and spreads it back around the room. So clean up takes three times as long, but it's fine.

Oh, and see the washer/dryer back there? He loves to help switch the clothes from the washer to the dryer.

Everything has a place. The thing I love about these bins (thank you IKEA!!!!) is that Sheridan can just dump stuff in when he cleans up. It just so happens that he typically puts items back in the bin from which he grabbed them, but it's not about making everything neat... it's just about putting things in a place where they belong. Same with the shoes - we just line them up on top of the shelf (yes, I'm aware that's simply too many pair of shoes for a three-year-old to own, but he has wardrobe needs).

But don't rule out neatness all together... We do have two shelves in our living room that are kept nice and tidy. Partly because we don't keep much on the shelves, and partly because Sheridan typically takes only one item from the shelf at a time. When he's done, he puts it right back in it's original spot. So it sort of stays neat all on its own. Sheridan has done a great job learning that he can choose what he wants to do, play until his heart is content (which can range from 2 minutes to 34 minutes, you ever know), and he will clean up independently (most of the time).

Now, I don't want you to think that Sheridan is some strange alien child from outer space that always follows directions, always cleans up with a smile, and always does these things independently. And I don't want you to think that my house is always neat and tidy. Absolutely. Not. Sometimes it looks like a tornado came through. And Sheridan's really good about following through on his responsibilities much of the time, but he has a stubborn streak and when he doesn't want to do it, he doesn't. want. to do it. So sometimes we guide him, sometimes we help him. But we are consistent, even when it is difficult. He knows his responsibilities (e.g., that toys need to be put away when you're done with them). And we don't do "chores" or anything like that. We just try to make it part of our every day routine so Sheridan gradually can contribute to our home and family...

His favorite contribution: Cooking! Sheridan makes a mean pizza. And toast, and eggs, and crockpot fried rice... he likes to help as much as possible in the cooking department.

The Learning Tower is one of the best kid-gear investments I ever made.

Don't worry. He knows to never touch the stove/oven and that he can only look through the window (here, he's watching our salmon broil - one of his favorite foods)

I will admit the kitchen is one area where I need to really let go and let him explore and try more (in terms of food prep). Typically it's hard because I'm on a tight timeline to get dinner made or get him out the door to school, and I know if I let him crack an egg I won't have time to change his clothes. But I need to learn to slow down more so he can get those new experiences that will be messy. The other morning he actually cracked his first egg (behind my back while I was getting something out of the fridge). And he was so gentle with it that it barely cracked and didn't make a mess. The whisking of the eggs is his favorite, and can get messy, but I love that one day his new-found responsibility will mean I have my own personal, live-in chef!

What responsibilities does your little one have around the house? I'd love to get new ideas for how to help Sheridan work on both his independence/responsibilities, and especially those that double as practice for important developmental skills. Please share!

(Seriously) Belated Birthday Post

2011-11-08T23:39:00.001-08:00

Sheridan turned three nearly 3 months ago and I still don't have birthday pics up? Well, sticking true to form, I will bombard you now with a plethora of images that will (somehow?) make up for their tardy appearance on the blog. A big shout out to my girl Penny who took amazing pictures that day!

First Up: The Theme

Sheridan loves to help me cook, and his favorite song for 6 months running was The Rainbow Song (click here for an ultra adorable version of him and me signing/singing it). So, that naturally meant that we would do a rainbow-themed cooking party. Now, I'm not exactly crafty, so when I decided to create these handmade and hand-delivered invitations to Sheridan's friends (yes, I made them and I had to hand-deliver each one with few exceptions because mailing them was pricey) it seemed like a good idea at the time. Until I started making them. Let's just say this was my first, last, and only venture into any sort of scrapbooking activity.

Every invitation was unique, no two were the same. You can see the cooking theme, but the rainbow theme was subtle. And, the 4th panel (asking for a used book instead of a gift) was truly the BEST idea ever... Sheridan doesn't need a bunch of gifts, but he loves reading and this was a great way to foster his relationship with books.

Now, I decided on the cooking party not only because of Sheridan's love for all things kitchen related, but also because I thought it would be great to include some age- and developmentally-appropriate activities that would allow Sheridan and his friends opportunities to practice fine-motor skills, etc., but also would hopefully translate to sharing his love of cooking with his friends (yep, nerdy mom alert).

The Theme Realized: The Cake

The cake is a big deal around these parts. Some of you will remember Sheridan's first and second birthday cakes. Each year my former student makes these cakes in Utah (yep, a whole different state) and ships them to me for assembly (they are fake inside - she uses styrofoam - but the decorations are made out of real fondant, sugar, etc.... you seriously need to check out her gallery). Some years require more ~~alcohol consumption~~ assembly than others, but I look forward to the surprise each year (I merely tell her the song and let her creative genius do the rest). Sheridan's cake is the centerpiece and sets the tone for the party - and it is always based on his favorite song. This year was no different.

Sixe tiers of awesomeness.

I placed the cupcakes, frog, and rainbow topper on. That's pretty much it this year - assembly was super easy. I had to pipe the clouds out of icing (yes, my clouds are a bit droopy) then place the rainbow so it would stay up.

Oh, and let's not forget mom's toes joined the party...

Setting the Stage: Always Host Cooking Parties in the Backyard

I'm not a fan of clean up. And although I had grand plans to make the 30 toddlers who descended on my backyard clean up after themselves, I figured it was easier to do it all outside and make clean up a non-issue.

The only downside to our little backyard is that we have no trees. By noon, the sun is blazing overhead and there's no relief. Notice everyone starting to migrate toward what little shade is left from the trees behind our property? Our backyard can be pretty brutal in summer.

You have to make sure everyone is prepared to work... each child received an apron with his/her name on it. Of course, this helps families who don't know each other (we invited Sheridan's whole class, plus all of his friends he's grown up with around his age), and keeps with the rainbow theme. More importantly, my hope was that this would encourage more cooking when they got home :)

We had three cooking stations:

Station #1

The "magic cupcake station" is where children made their cupcakes. Why was it magic? You'll see :)

I bought nearly all the supplies at the dollar store. I made the recipe cards myself (and made up the recipe so the children would be whipping up cupcake-size batches of batter). There were enough ingredients for children to make as many batches as they wanted. And some definitely did. Just in case you're wondering, the green stuff is grapeseed oil in salt/pepper shakers with the lids off. I thought it added a great touch to the rainbow theme.

Alas, behold the "magic" - the children were making rainbow cupcakes. So the recipe card explained that this batter (see those rainbow sprinkles?) would turn into a rainbow when I baked them. Of course, I made actual rainbow cupcakes the day before. I threw the batter in the trash at the end of the party - they were none the wiser :)

And there was A LOT of this...

Hands like that are proof of lots of fun.

Station #2

The "ready for the oven" station is where children brought their magic cupcake batter to fill cupcake tins.

Walking the finished batter to the cupcake tins.

I just love little hands at work and play.

When the children were done making batter, they put all the dirty dishes in one big tub. Made clean up super easy.

Station #3

The "build a sandwich" station is where children made their own lunches. The children's menu options included a Grilled Pear & Brie Sandwich; a Grilled Vegetable Sandwich; a Chicken Salad Sandwich; an Almond Butter, Honey, & Banana Sandwich; rainbow goldfish crackers; and fruit. The children made their own sandwiches, and I had recipe cards out for each type of sandwich.

Look at these perfect little toddler-sized rolls Magpie made especially for Sheridan and his friends!

The rainbow goldfish were a huge hit - I filled a large fishbowl and provided a little fishy net for scooping.

And don't you worry... the adults had amazing food, too. Shameless plug for Magpie Cafe. Seriously, if you live here and haven't tried it - it is a culinary MUST in Sacramento. Your taste-buds can thank me later. If you're not from here, put it in on your must-do list when you come to Sacramento (this town is really growing up - in a culinary sense - and Magpie is one of the top restaurants on the list of places changing this town). And the owners and staff are amazing - they love Sheridan and have been really supportive of the Ds community and DSIA (so they deserve a little Web love here in the form of pics).

Fresh fruit

Italian sandwiches

Vietnamese sandwiches

Grilled vegetables sandwiches

Italian

You wouldn't think a bean salad would be worthy of excitement and praise... but this one TOTALLY is.

Black rice salad - another favorite.

In addition to the cooking activities, we had plenty of other options so if a child wasn't particularly interested in making cupcakes (which turned out to be ZERO children), or if the cupcake station was too busy, the children had plenty of other options to hold their interest.

He would have buried me all the way to my neck if he could :)

Even the sidewalk chalk was rainbow.

One of my favorite images from the whole day.

I did not, however, supply expensive technology for the party. That's his mom's iPhone.

Not To Be Outdone: The Rainbow Cupcakes

We couldn't eat the six-tier cake, so I made a double batch of white cake batter, divided it into seven bowls, and used the best food coloring ever to make the colors of the rainbow (I added pink because I felt like it, even if it's not in The Rainbow Song).

A big thank you to Sheree for this idea! She made rainbow cupcake's for Gabby's birthday party and they were perfect for Sheridan's theme, so she told me how to make them.

The cupcakes were awesome (and all the credit goes to the food coloring, not me).

I didn't bring these out until everyone had made batter, put it in the tins, made and ate lunch, enjoyed the other activities... this was the grand finale. I brought them out and converted the magic cupcake station into the cupcake decorating station.

Devouring the Rainbow

Do not even think about getting a taste from me.

I love the sandy fingers that can't wait to dive in.

The Best Part: Sheridan Had So Much Fun

Grandpa & Nanny Airplane

I love that Gary enjoyed it so much, especially after he missed Sheridan's birthday last year.

He loves his Nonna.

Don't Forget Your Party Favor

I created and laminated a recipe card for each child. Rainbow themed, of course.

I tied the recipe to the only hardware needed... chopsticks.

He looooooooves his letters (& numbers)

2011-11-07T21:26:00.000-08:00

Sheridan has been interested in letters for a long time now, and one of his favorite toys is this alphabet puzzle:

Because he's doing so well on his letters (can recognize them, knows most of the sounds, etc.) I figured I would dust off his Montessori sandpaper letters and sell them on Craig's List. Sheridan had other plans.

These particular letters have been sitting on his shelf in the living room and he hasn't touched them in over a year - hence my plan to sell them - but I guess the novelty got to him. You'll see in the first half that I just show him letters and he names them (some he says the name; others he says an approximation - like L is "luh," G is a guttural German /g/ with /ee/ tagged on the end, and W is "voo"; and some he has trouble saying - like Q, he says "doh" or "doo").

I'm so proud of the hard work he's done to really learn his letters and letter sounds. He's just thirsty for all things letters, reading, books, etc. so he gets lots of practice because he loves it so much.

The second half of the video I started filming as he was helping me clean up because he went back through them on his own. Very cute :)

I guess I'll be keeping them around, maybe (unless somebody out there wants to buy them? I also have the lowercase sandpaper letters, they make a nice set --> toothy grin!). I still need to buy the cursive sandpaper letters because his school teaches writing in cursive. "Seriously?" you ask me... Yep. (As an aside, how and why the Montessori method teaches the letters in the specific way they do - starting with the sandpaper letters - is very interesting if you're interested in checking it out)

Oh, and here's bonus counting footage. He loves to count to 10, and he's started trying to count to 20 (he can approximate eleven and twelve, then has a bunch of jumbled "tees" - teens - before finally at some point deciding there's been enough teens and proclaiming "teh-tee!" for 20). But, in our house he LOVES his number line - points out every number and says it, so when he wanted to show off for Daddy I grabbed my iPhone. At which point Sheridan decided he wanted to be behind the camera.

Ready for his directorial debut, I suppose. Check it out :)

The Right Stuff

2011-10-29T22:38:00.000-07:00

A.K.A. Happy Halloween!

Outta my way, Mommy.

Sheridan couldn't wait to show off the class rabbit named Button when we went to his school's Harvest Festival last night. He looooooves Button. And apparently Button is pretty mean to everyone else, but is really good with Sheridan.

Cutest astronaut ever.

Practicing his moonwalking skills.

Astronauts get ALL the girls.

See?

He caught himself some real-live aliens at the Fairytale Town halloween bash!

Gary's a little worried the paint won't come off by Monday morning ;-)

Astronauts drive tractors, too.

EEEEEEK! An alien hitched a ride home with me!

Sheridan even found his good friend Saoirse... I mean, Tinkerbell.

Nonna came to join the fun... sliding down Jack's beanstalk.

Down the rabbit hole.

Have a safe and happy Halloween, everyone!

Apraxia Update II

2011-10-27T18:20:00.000-07:00

My last update on Apraxia and Sheridan's speech therapy included a video taken six months ago. I decided it was time to do an updated video now that Sheridan is working on more advanced sets of Kaufman cards, and you get to see him work on over 50 cards. You'll see him signing some of the words, along with saying them (I think my favorite is turtle... so freaking cute). And, of course, he still benefits from PROMPT. If you haven't checked out the video in that last post, it's worth it to see how far he's come in only six months.

The biggest differences you'll likely notice are:

he is able to produce vowel sounds without the extreme frustration he used to experience
his SLP (the Amazing Jane) is doing more work on correct articulation instead of simply focusing on the production of specific sounds (he still has a long way to go, but the difference is huge - she can actually work with him on how fluidly he says some words, and work on clarity)

One thing that's not different... he's still SUPER adorable :)

And this week, when he ran out of grapes at snack time, he said to me, spontaneously, "Mommy, more grapes please." A FOUR-WORD phrase! Yes, grapes and please were approximations, but they were pretty darn good approximations.

So exciting to see his speech taking off right now...

Enjoy!

Overdue Apraxia Update

2011-10-10T23:03:00.000-07:00

As you'll recall, Sheridan was diagnosed over a year ago with Apraxia of Speech, and I wrote a post about the criteria for Apraxia back then, as well. Since then, I've seen many helpful videos on youtube... parents who video their children periodically to see the progress (or not) a child is making. I've been thinking for some time that I need to do that, so this is my first of what will be a series of posts over time.

When I first posted Sheridan's diagnosis, many people sent me private questions about Apraxia or simply asked that I provide as much information as possible. So, for this post I'll include some information about what Sheridan's speech intervention looks like, show you some of the materials we're using, etc.

Some Basics to Lay the Foundation

Sheridan's SLP is allowing me to record and post portions of Sheridan's sessions. Although she uses a number of strategies with Sheridan (e.g., oral motor therapy, facilitating speech through play), the two things you'll see in the video below are Jane's use of PROMPT and Kaufman cards. Most speech sessions look like this:

1. Oral Motor (usually about 20 minutes)
2. Kaufmann cards using PROMPT
3. Play (during which Jane works to help Sheridan generalize the speech production beyond the cards, often using PROMPT when necessary)

Here's an online description of the Kaufman cards: The Kaufman K-SLP Treatment Kit 1 (basic level) employs a systematic treatment approach that controls the level of motor-speech difficulty by simplifying word pronunciation patterns. Each card displays a series of “successive approximations” of the target word based on least physiological effort. This “word shell” approach is highly effective for quickly building motor-speech coordination and allows children to begin progressing immediately from a simple core vocabulary toward becoming effective vocal/verbal communicators.

The 5x7 cards are organized from the "easiest" words (from a motor planning, speech production perspective) and then build on those sounds to form progressively more advanced/difficult words (I'll show you what I mean in a second). Bonus: Nancy Kaufman is a woman after my own heart... look at those color-coded dividers. *swoon*

I was a little hesitant at first because all the cards use cartoon drawings. For example, the "daddy" does not, ah-hem, look like daddy. At. All.

So I was worried about whether or not these would make sense for Sheridan, and his ability to generalize from the specific drawing to real objects/people. I didn't need to worry. He totally gets it - calls that card "daddy" every time he sees it, calls Gary "daddy," and doesn't call random up-tight white guys "daddy." So we're good.

An example of an early card (from the CVCV group (by the way, C = consonant; V = vowel) would be dada, mama, moo moo.

The next level is VC (e.g., on, out, in, eat, ouch, arm). Here's an example:

Sheridan has difficulties with /r/ (as do many 3-year-old children), so he still approximates arm as "ahm."

The image on the left is the front of the card (what Jane shows Sheridan); the image on the right is the back of the card showing the progression of the speech sounds. So, at first, a child might approximate arm by saying "ah," but then progress to "ahm" and eventually to "arm." The top is always the goal word.

Next, CV includes words such as two, bay, tea, new, dough, tie. Here's a couple examples:

Sheridan does well with this card and says pie (though he does drag out the /i/ and /e/ at times).

Sheridan still struggles with /m/ versus /b/. Most often he says "be" or "m-be" here.

VCV cards include words/phrases such as: oh no, okay, oboe. Here's an example:

Notice that as words get more difficult, one might use a longer progression of approximations to get to the target word. Sheridan is doing really well with this particular word, and nearly always says "a-po"

CV1CV2 are words where the syllable is repeated, but the vowel changes (such as: puppy, mommy, baby). Here's a couple examples:

Sheridan currently says "tay-to," but sometimes needs prompting (meaning a physical PROMPT). Jane always notes which cards in a set Sheridan says spontaneously (on his own), and for which cards he needs a PROMPT. This helps us see with what sounds he might be struggling, and the progress he's making in a given set (e.g., today on set #3 he said 16 out of 17 cards - correctly - all by himself).

One of Sheridan's favorite words... he immediately says "bubbos" when he sees this card.

Sheridan says "pee-po" - but occasionally needs prompting to get the "pee" on the front (he has a tendency to say the last syllable of a word; this is somewhat common in people with apraxia).

The "hardest" set he's working on now is a set of 30 C1V1C2V2 "simple bisyllabics" (such as: muddy, honey, panda, marble... notice the consonant and vowel change in the second syllable). Here's one example:

Sheridan says "noo-do" with prompting (he doesn't know all the words in this set yet by sight). Notice that this word is a combination of the sounds he learned in earlier sets (new & dough).

There's 12 more sets after these... and just because Sheridan is on set 6, doesn't mean his speech is perfect on sets 1-5. He still practices the other sets and is working on improving his speech on those words.

And Now... The Video

This video was taken this past Spring when Sheridan was 2 years, 8 months old. At that point he had been receiving two hours of speech therapy every week (two 1-hour sessions each week) for about six months. (Now he receives three 1-hour sessions each week).

A few things to note about the video:

Sheridan is working only on sets 1 (CVCV) and 2 (VC) at this point in time.
You'll see Jane using PROMPT when she uses physical cues to help Sheridan remember/feel how to make specific sounds.
You'll see Sheridan get really frustrated a couple times because some sounds were really hard for him (for example, /e/ as in eat). Many vowels were really difficult for him.
But know this... Sheridan LOVES (seriously loves) these cards. So much so that we bought a set so he could practice whenever he wants (sometimes he asks every day, sometimes he asks once a week... we follow his lead).
Notice that Sheridan often leans into Jane so he can be prompted.
He often prompts himself, as well.
I provide the sound he's working on, and the target word so you can get a feel for how this works.
It's worth watching to the very end so you can see that, despite his frustration at times, he truly loves Jane (and he's a little obsessed and extra excited for some of the cards... we often have to hide the up card).

Turn your volume up so you can hear Sheridan :)

First IEP Tomorrow Morning

2011-08-31T22:10:00.000-07:00

Although I have a LOT to share... this is the most important item for now. Enjoy.

Because PT is Soooooo Fun at This Age...

2011-07-15T16:00:00.000-07:00

I just had to post a couple quick videos of Sheridan.

Here he is working on his climbing (he's doing the climbing, his PT is making sure his feet stay on the shallow ledges)...

And now on to upper body strength (you can see at the very, very end where she lets Sheridan try to hang - he loves this activity!)...

I mean, seriously... how fun is that?! :)

Where Can You Turn? (Part I)

2011-06-22T20:40:00.000-07:00

One of the comments/questions I get frequently centers around where to find help with Early Intervention (EI) or school district issues. Especially if parents have first tried working with their child's EI service coordinator or IEP team and doesn't seem to be happy with the answers or outcomes.

Although each state - and even each district - is different, I do have some suggestions that have served other families (and at times, me!) well... I didn't have time to put them all in one post, unfortunately. But I promise I will continue to add new information to subsequent posts (hence the Part I in the post title).

ADVOCATES

No, I'm not talking about the kind you pay (from what I've heard from other parents, they tend to be hit or miss... but if you really need a professional advocate, ask around to find out who is really best to help you in your situation).

Federal law requires independent oversight to ensure people with developmental disabilities, and their families, receive the services and supports they need. In California, the State Council on Developmental Disabilities (SCDD) was established by both state and federal law as an independent state agency to meet this requirement. From their website:

Consumers know best what supports and services they need to live independently and to actively participate in their communities. Through advocacy, capacity building and systemic change, SCDD works to achieve a consumer and family-based system of individualized services, supports and other assistance.

To accomplish this, California has 13 Area Boards, we happen to live in Area 3. I'm not sure what the system is in other states, or what they are called, but now that you know the general idea, hopefully you can look into it in your area.

So, if you ever have a question about special education law, a decision made by the EI program, or you simply need help understanding the system or your rights, you can call them. They are there to help you advocate on behalf of your child (or adult, or whoever has a DD) to ensure their rights are upheld. Our Area Board 3 representatives even go to IEP and IFSP meetings, if needed. Often times they can point you in the right direction after a simple phone call or email exchange. You can find basic contact info here for all the Area Boards, or google the name of your Area Board to find their website. And they (at least Area Board 3) hold workshops for parents to learn about IEPs, how to advocate, a child's rights, etc.

Bottom line, this is one of the first places I suggest parents turn if they feel they need help. And it's free :)

SPECIAL EDUCATION LOCAL PLAN AREA (SELPA)

Sorry, this one is specific to CA... but please leave a comment if you have information about something similar in other states! I'll check it out and add it to the post.

In California, all school districts and county school offices were mandated to form consortiums in regions (called Special Education Local Plan Area, or SELPA) to provide for all special education service needs of children in each region. So, each SELPA created a local plan describing how it would provide special education services. From their website:

SELPAs are dedicated to the belief that all students can learn and that special needs students must be guaranteed equal opportunity to become contributing members of society. SELPAs facilitate high quality educational programs and services for special needs students and training for parents and educators. The SELPA collaborates with county agencies and school districts to develop and maintain healthy and enriching environments in which special needs students and families can live and succeed.

I have heard from many families that talking with somebody in the SELPA often is very helpful.

A FEW ONLINE RESOURCES TO GET YOU STARTED

There's no way I can provide an exhaustive list of online resources, but for now I will at least point you to some of the websites I (and others) have found helpful.

IDEA 2004 - this is the portal from which you can access both Part B (ages 3-21) and Part C (birth-2) of the federal Individuals with Disabilities Education Act (IDEA). Unfortunately, the Part C section is still not available, but you can find some basic information about Early Intervention here.

Wrightslaw - a special education law website that covers federal and various state laws; you can even buy books, find case law, and get updates via their newsletter.

Special Education Rights and Responsibilities (see chapters below) - this manual is available in chapters online and provides information about both U.S. Department of Education regulations and California Education Code... a big thank you to my friend Julie who sent me chapter 3 at just the right time to give me some extra support :)

Information on Evaluation/Assessments - Chapter 2
Information on Eligibility Criteria - Chapter 3

Plain language publications (sorry, these are specific to CA only):

Turning three years old - English & Spanish
Understanding special education services - English & Spanish
Moving on: Transition to adult services workbook for parents - English only

HOPEFULLY THIS GIVES YOU A STARTING PLACE

Like I mentioned previously, I will certainly follow up on this post as I can. I have lots of other resources to share, but this is the easiest starting place.

Feel free to let me know what some of your most useful resources are and I'll take a look. I'm always happy to find and share good information!

So here's the thing...

2011-06-21T22:20:00.000-07:00

I'm just gonna lay it all out there... but first grab a stiff drink, or some wine. This post turned out a bit lengthy :)

We declined the assessments by the school psychologist.

*Gasp*

Okay, so maybe that's sort of anti-climactic and not a big deal. Maybe you did more of a "Huh?" or "So what?" instead of a full-blown gasp... but I assure you, some folks gasped.

I figured our decision might raise some eyebrows among the education community, and even among some parents who have children with special needs. Keep in mind, though, that the school district needs parental consent before anybody can legally assess/observe a child. That means you don't have to consent to specific (or any) of the assessments. So, if you decline, they can't/won't do that assessment (although, in CA that might change if a bill passes requiring the school district to take parents to due process if they refuse assessments/services, but that's a different post). Of course, you can't decline a speech assessment and turn around and say you want speech therapy. So I wouldn't recommend being all willy-nilly with your declinations. But I digress...

All this simply means is that Sheridan - or, more accurately, his pain-in-the-ass parents - no longer fit into the traditional, expected, routine IEP process.

And let me say this before I go on: despite some early-on frustrations (i.e., the school district - for a very long time - did not share what preschool programs existed; we wanted to visit a few example programs so that during the IEP Gary and I could make an educated, collaborative decision with the team... they did eventually identify a few programs for us to visit)... so, despite those early frustrations, our two meetings with district personnel have gone really well (the first was his transition meeting about 4 weeks ago, the second was Sheridan's academic/pre-academic skills assessment). All children have the right to have their parents as equal members (with school district personnel) on their IEP teams. And I believe that Sheridan's outcomes will be substantially more positive if we all work together collaboratively, so I went in to this process with that collaborative, cooperative spirit. And so far, so good on all accounts!

So, the biggest question y'all probably have is: Why did you decline the psych assessments?

It's not an easy answer... but I'm gonna give it a try. And I provide way more details than you probably care to read about, so feel free to skip around a bit, but after receiving so many comments and emails about how useful this level of detail is, I'm happy to provide it. I sure wish I had it in advance...

Sheridan does not need a psycho-motor evaluation. The school district offered us OT and PT evaluations, so the psycho-motor evaluation would be duplicative. No need for that. We believe the OT and PT will provide better assessments anyway, given that they are licensed specifically in those areas of expertise. For those who are curious, here's the description of the psycho-motor eval: These observations and tests measure the ability to coordinate body movements in both small and large muscle activities. These tests may also measure visual perceptual skills. The assessment includes observations and testing performed by the following professional staff: [the School Psychologist box is checked].
Sheridan does not need a Social/Emotional/Behavior Status evaluation. Not at this moment, anyway. We don't have any concerns in these areas, unless the school district has some kick-ass, magical service that gets rid of the terrible twos. But I doubt that, because the district would have way more money if they tapped that market. And besides, Sheridan's twos aren't nearly as bad as other kids'. [*****this is me knocking on my MDF, fake wood desk*****]
So, that leaves Intellectual Development (ID) described as: INTELLECTUAL DEVELOPMENT (Including means to assess when standard tests are considered invalid): These observations and tests measure the ability to utilize information to problem solve in both familiar and new situations. These tests also reflect learning rate and assist in predicting how well the individual may do in school. Verbal and non-verbal tests may be used as appropriate. These tests may include basic psychological processes of auditory, attention, visual and sensory motor. The assessment includes observations and testing performed by the following professional staff: [the School Psychologist box is checked]. And here's some of the reasons we declined the ID assessment (remember my previous disclaimers that I'm not a lawyer and I don't even play one on TV? Those come in handy here)...

The ID assessments are not valid at Sheridan's age. Even the school district noted that the available assessments "aren't very accurate" for young children like Sheridan. Even if I wanted to do an assessment, I would never consent to an assessment that is not going to provide a valid "picture" of my son's abilities. For example, many assessments require a child to speak an answer (I'm not saying that the exact instrument the district wants to use requires this, this is simply an example), so if Sheridan cannot speak the answer (which often he cannot given his Apraxia of Speech), he might not get credit for knowing something. In other words, in that example, the assessment isn't just measuring Sheridan's knowledge or abilities, it's measuring his ability to communicate his knowledge/ability. So, the bottom line is, an assessment is only valid to the extent that it assesses/measures what it intends to measure, and nothing else. Everything I've read about ID assessments at a young age indicates they have validity issues. And the school district agrees with this point, so I will move on...
The ID assessment is not required to establish eligibility. As two quick examples, I sat in on two different IEPs this past spring (as a note-taker) - both children have Ds - and neither child qualified for special education support via their ID assessments. Their scores "weren't low enough" to qualify for the "mental retardation" criterion, so the IEP teams found other, general categories to qualify the children. Also, according to federal law you can establish eligibility for special education support through any number of categories, "mental retardation" is just one of them (and, yes, eventually that category will be re-titled "Intellectual Disability" soon). The State of California added additional categories, as well. So, the ID assessment is not the only way a child qualifies.
For Sheridan, there is no value added by doing the ID assessment. The result of the assessment is merely an educational determination (or diagnosis) of cognitive status. The assessment has no bearing on any functional outcome for Sheridan. It doesn't provide any additional service or therapy. Functionally, it does nothing. Provides him with zilch. So, the assessment exists (in Sheridan's case) merely to provide the educational determination. Which means every time somebody at his school, in the school district, a new therapist, anybody opens his file they will look at this determination and formulate an opinion of him. Which brings me to our biggest reason...
It's a matter of human dignity. It's our responsibility to advocate on Sheridan's behalf until he is able to take over the job himself. And a key function of our responsibility is to respect Sheridan as a person. A whole being. And our belief is that he as the right to the same dignity as any other person. Labeling him based on cognitive assessments (or providing an educational "diagnosis") simply for the sake of checking a box on a form is demeaning. You do realize what they are looking for, right? If a child performs below average (or later when standardized IQ tests are administered and the IQ is anywhere below 70) they are diagnosed with "mental retardation" (again, this will change to Intellectual Disability soon, but the actual words don't matter to me). The sole reason that diagnosis is needed, as far as I can tell in Sheridan's case, is simply to check a box and say, "ok, this kid is eligible for services." It's a label for the sake of a label.
And by the way, he qualifies (at ages 3-5) under California's "Established Medical Diagnosis" criterion. That makes the assessment a moot point. An established medical disability is "a disabling medical condition or congenital syndrome that the IEP team determines has a high predictability of requiring special education services." And remember that special education services includes things like speech therapy, OT, PT, etc., so it's not just limited to a "special day class" or something like that.

Ok, some counter arguments and questions...

Do I think ID assessments are inherently bad? No! In fact, I think they can be - and are - useful for many students.
Lisa, you're delusional and afraid of the truth about Down syndrome. Anybody who knows me knows how incredibly ridiculous this assertion is. And anybody who knows Sheridan is aware that there is absolutely nothing to be afraid about in terms of who he is. I can't believe how many people - including advocacy organizations - told me that we are hiding from Down syndrome and we're deluding ourselves. Funny how they don't see our viewpoint as fully accepting Sheridan's diagnosis.
Sheridan is doing SO great... why not do the stupid assessment and prove all the stereotypes about Ds wrong? As tempting as that is, it assumes any assessment would be valid. But let's say, for argument sake, that there was a valid assessment... Sheridan's abilities (and challenges) speak loud and clear through all the other assessments (e.g., his academic skills) and his previous reports from his Early Intervention providers. THEY know Sheridan better than anybody else at this point (from a "services" standpoint)... most have worked with him for a very long (his PT has been with us since he was a newborn!). So, the new assessments and his final Early Intervention "graduation" reports will provide a clear picture of where Sheridan is. All these combined show how kick-ass Sheridan is doing. The ID assessment wouldn't add anything new.
But, Lisa, don't you want the school psychologist to at least meet Sheridan so he can charm him/her? Don't you want the school psychologist to know Sheridan given that he/she will be on the IEP team? I admit I hadn't thought of this question until my good friend Jen asked me. It's a really good question (thanks, Jen!). And as much as Sheridan likes knocking the socks off of people (especially the ladies, I might add), we aren't going to agree to an evaluation or observation simply so they can meet. Although I admit we have to do more leg work to better understand the role of the school psychologist on the IEP team - especially in light of declining any evaluation - we just don't see the need.
Do you have some kind of hell-bent animosity toward psychologists? Hahahaha. No. In fact, much of my doctorate training was in social cognition (social psychology). I happen to like many psychologists very much :) It has nothing to do with the school psychologist, per se. It has everything to do with assessments themselves, the goals of the assessments, and our philosophy about raising Sheridan.
Sheridan already has a diagnosis/label of Down syndrome, so what's the big deal if he has another diagnosis/label on him? The fact that he has a medical diagnosis is different than an educational determination. We're talking about a "diagnosis" from an educational perspective, made by an educational team (the IEP team). And, as those of us in the Ds community know, simply having a Ds medical diagnosis means that many people will view, treat, and make assumptions about Sheridan based on misinformation and stereotypes. I see no need to add another layer of labeling to that mess.

Okay... now I'm interested to hear what you think about all this.

Speaking of Lucky...

2011-06-14T15:20:00.000-07:00

Yes, I'm lucky to have my Sisters here in the Sacramento area, but I'm just as fortunate to have so many people I consider friends IRL (In Real Life) that I met through blogging. And every once in a while I'm really, really lucky and I get to meet them face to face (I'm always a little nervous when I meet blogging friends in real life - I think I'm better at sound bites via email and through my blog - and I secretly hope people like me and don't think I'm too weird or something).

A couple months ago I had the privilege of meeting Ahhhh-ZZZEEEEEEEEEEY (Ozzie, that's how he says it) and his family. I can't even tell you how much I love them. The Niblock's have a special place in my heart, and Dan is one of the best friends I could ever ask for (he's also an amazing advocate and incredibly talented).

It's because of my weekend with Ozzie that I learned the sign for dinosaur, and Sheridan now signs it all the time (with an accompanying roar/"ooooo" every time). Also thanks to Ozzie, at random times throughout my week (say, while I'm showering, or trying to fall asleep, or trying to stay awake during a meeting) all of a sudden I hear, "let's riiiiiide the dinosaur train!" Thanks, Ozzie, I don't know how I lived without that catch phrase.

I hope to meet more of you IRL :) Especially if you treat me like a Queen as The Niblock's did... um, a sight-seeing and culinary tour of their hometown? Check! Late nights drinking beer and watching Bob Ross re-runs? Check! And thank you very much for that... you're my kind of people! ;-)

Love you all :)

The beautiful and very talented Layla... she has the best imagination, sense of humor, and is SO much fun to play with. Layla, I wear my button ring you made me all the time.

If I could surround this image with cute little hearts and stars I would... Ozzie is the sweetest (and most energetic!) little guy (he would even give Sheridan a run for his money - I don't think Ozzie has an off switch). And, well, Dan simply rocks.

Dina is amazing. And stunningly beautiful. I enjoyed getting to know you so much better! :)

The First School District Report is In

2011-06-13T21:40:00.000-07:00

I just received Sheridan's first written assessment report from the school district: the pre-academic and academic skills assessment (I provide more detailed info below for those who are curious what such an assessment looks like). In two pages I found only 4 corrections I requested be made. Not bad (but we believe they are important corrections, so we'll see how it goes).

I appreciate that the Resource Specialist is working with me... she sent me a copy of the report to review before turning in the final report. I believe this is how it should work (e.g., if I have a question or a correction we identify it before the IEP meeting) - we're all on this team together! :)

As far as her recommendations or any goals, she simply wrote, "Recommendations will be made at the IEP meeting." Of course, I would prefer to see her suggested goals in advance (although she did tell me verbally at the end of the assessment what she thought might be good goals and she asked for my input). Writing goals is part of the IEP so I'm fine with waiting to discuss as a team :)

What was Included in the Assessment

The pre-academic and academic skills assessment (she used the Brigance Diagnostic Inventory of Early Development II) was sort of a global assessment that covered the following areas: (keep in mind some of this was based on parent report, and his speech therapist who happened to be present for part of the assessment weighed in a few times, too, to verify I was telling the truth :)

Fine-motor skills - he can squeeze a squeaky toy (that one kind of cracked me up, honestly), put objects into a container, use a good grasp and voluntarily release, take objects out of container, grasp objects easily and automatically, unwrap loosely wrapped items - think: give him a granola bar that I've already opened - he can tear through that sucker and get what he wants out of the wrapper :) - deliberately pour/dump objects from a container (oh boy, can he), stack 3-4 boring one-inch cubes (my commentary, not verbatim from the report), scribble with crayons without losing contact from the paper, hold a pencil with his fingers (not fisted), imitate scribbles in vertical, horizontal, and some circular directions. By the way, yes, this is all OT stuff, and Sheridan will have an OT eval, as well.
Gross-motor skills - Sheridan can stand without support, attempts to jump without hands held but feet do not leave the floor yet, walks well, walks sideways (she wrote 2 steps, so this was correction request #1: he can walk more than 2 steps... at least 5-10 when he is skirting an obstacle), he runs with some falling - that boy thinks he's Carl Lewis, Michael Johnson, and Jesse Owens all wrapped up together... but with less coordination at high speeds :) - he walks backwards, stands on his tip-toes (holding on for balance), and walks up and down stairs with hand held. Yup, you guessed it, he'll also have a PT eval by the district.
Receptive and expressive language - he can expressively (meaning say) identify pictures of common objects using signs and approximates the word (correction #2 was requested here: she said 22 out of 27 objects based on Sheridan's speech therapist pointing out that he can do up to 26 or 27 of the 30 Kaufmann cards he's working on - so that's a finite number of cards, but Sheridan can say (sign/approximate) likely around 200 objects/words - he receptively (meaning he understands) identifies pictures of common objects, 20 body parts (he knew more than that but some he knows aren't on their list), he can follow three-step directions (this was correction request #3: her report only said one-step directions but I pointed out that during the assessment I asked Sheridan to (1) go get his "I Spy" book off the shelf, (2) bring it over here, and (3) sit down so we could read it together), he uses polite phrases such as please and thank you, he signs his name (correction #4: he doesn't sign his name, he says it). He'll have a speech eval, too.
Academic - he gives one or two objects when asked, he counts to five with one-to-one correspondence (he pointed to each of five frogs and counted them correctly), names 9 out of the 11 colors on the list (he doesn't name grey or pink much) and points to 10 out of 11 colors (he can identify pink if asked), he matches colors, identifies pictures by description, identifies about 15 sight words, when given a book he turns it right side up and turns the pages one at a time, he looks at pictures selectively, points to pictures of interest, points to pictures of common objects when asked, labels pictures of common objects using signs and approximations.
Daily living - Sheridan drinks from a cup/glass held in two hands without assistance, uses a straw, working on drinking from open cup, he returns the cup to the table after drinking, uses a spoon without turning it upside down with little to no spilling, uses a fork, working on using utensils with fingers (still uses fist mostly), he assists with dressing (meaning he puts his arms in, steps into pants, helps pull up underwear, etc), removes some articles of clothing and his shoes, working on putting on his shoes and socks, uses potty but may need help with clothing, lets parents know when he needs to go potty, completes toileting routine with some assistance and reminders.
Work-related skills - he opens doors or cabinets without knobs, can open a door with a handle, helps put things away, exhibits signs of developing independence by having the attitude that “I can do it myself” (boy, does he EVER!), watches TV for twenty minutes (he watches 1-2 episodes of Signing Time a day), engages in activities for five to ten minutes, participates in songs and finger plays during circle time activities that last about ten minutes.
Social skills - Sheridan dramatizes adult activities, associates objects in play, watches other children and may attempt to join, engages in domestic play imitating an adult activity (e.g., cooking, talking on the phone), gives affection to family members, shows an interest in the activities of others, shows (A LOT of!!!!) pride and pleasure in new accomplishments, explores the environment and returns to the caretaker as a secure base, watches the faces of other people for clues to their emotions or feelings, likes to perform for others (seriously, he's a performer!), and takes pleasure in doing simple favors for others.

The report/assessment does not result in a score, rather it provides a general sense of where his "academic readiness" is so we can create goals at his IEP. For example, Sheridan was not interested in the activities the she brought, so we used his own activities (and some his speech therapist had). So, one goal the Resource Specialist suggested she might write is, "increase ability to complete assigned tasks" because he didn't do much of that at her request. In his defense, he simply wasn't interested in some of her requests. In her defense, it is important to follow through (he does complete tasks when he wants to, and I'm not in to forcing him to do something he doesn't want to... BUT, he does need to increase his follow-through when needed... like clean up, complete a task he chose, etc.). So, in the end, this is a decent goal, I think. Another goal will likely be around math skills (increasing his understanding of math concepts to higher numbers - I've never been one to teach him to count to 10 or 20 simply for him to memorize the sequence... I specifically avoided that and instead have worked on lower numbers to ensure that he understands the concept and quantification of each... he can definitely do 1-5, and I'm pretty sure he can do more, so increasing it up to at least 10 over the next year is a great goal to work on early math skills).

So, that's where we are... just thought I would throw this out there for other families preparing for, looking forward to, or in the throws of transition. As usual, I'm happy to answer questions if you have them :)

Colors, Signing, & Singing

2011-05-31T13:27:00.000-07:00

Few people get the chance to really see Sheridan sign or hear him talk/sing... here's your chance for a little peek :)

The first 17 times he did this (yes, this is his favorite song right now so he requests it all the time), his words were a bit clearer (in terms of articulation) and he signed more. But this is a really good representation. You can see he knows the song, knows the order, knows the words, most of his words are approximations (some are much better than others), and he signs like crazy (and helps us sign!).

The only television Sheridan watches is 1, maybe 2, episodes of Signing Time a day. He has well over 200 signs that he picked up in just over 6 months. We owe that to Rachel Coleman. Love her (and Alex and Leah).

Enjoy!

What's My Name?

2011-05-26T20:54:00.000-07:00

For the past few months Sheridan could approximate the syllables of his name with some prompting. This morning, he climbed up on our bed (his daily ritual to help wake up his night-owl parents) and proudly started saying his entire name, unprompted! This evening I was able to get quick video of it - it's not quite as clear as it was this morning... but it's still AMAZING. I owe you all an apraxia update, but that will have to wait. For now, enjoy :)

You'll notice he prompts himself for the "sh" sound (which actually comes out closer to an "s" sound), his "ri" sound is more like a "wah" sound, and "dan" is pretty darn close ;-)

Lucky In Love

2011-05-23T21:06:00.000-07:00

I am so fortunate to have The Sisterhood... a local group of (more than 40!) "Sisters" who all have a young child with Ds. It's an amazing group of women - we laugh together, support new moms, support each other through IEPs/IFSPs, revel in every accomplishment, listen when life gets rough (Ds-related or not)... I don't know what I'd do without them. I truly love my Sisters.

And this past weekend some of us Sisters went to Lake Tahoe for some much needed relaxation and bonding time. Just us girls. Ahhhhhh... so lovely. We'd been planning the trip for quite a while, so it was nice to finally enjoy two days of focusing on ourselves (and each other!).

Here's a few pics from the weekend - and I have to give a very special shout out to Laura Beth's family who offered their AMAZING (the word hardly describes it) house to use for the whole weekend. Thank you for rejuvenating these mamas.

From left: Laura Beth, Gina, Jen, Sarah, Jenni, Jonna, me, Debbie, Cori, Amy, Sheree
(hot mamas, huh?!)

That's Susan on the right... she arrived a bit later :)

This is by far my favorite picture of the Sisters!

Wordless Wednesday

2011-04-27T18:21:00.000-07:00

Sheridan loves his PT :)

Already?! What Would You Do?

2011-04-13T17:02:00.000-07:00

Ok, one of the biggest concerns I had when I learned Sheridan's diagnosis was: How will others treat him?

I mean, let's face it. Everyone (well, maybe not everyone, but most people) gets teased. And it sucks. And it breaks my heart thinking of kids teasing Sheridan as he grows up.

One of my Sisters just dealt with this exact issue - her 8-year-old boy (who has Ds) was told by a couple classmates that they didn't want to play with him because he's a "retard" and "dumb" (although I have to give a shout out to two other classmates - both girls - who stood up for him in a big way, so not all kids are cruel, right?).

Thinking I had a few more years to brace myself for exactly how I would handle this kind of thing... the other day at the park two girls (about 7-8 years old) were watching Sheridan and I play. I noticed out of the corner of my eye that one of the girls started to mock Sheridan.

Surely I saw this incorrectly. I was using peripherals, after all.

Nope.

There she was, imitating his open-mouth posture (in a grotesque, over-exaggerated way) to the other girl. You better believe I gave that girl some wicked direct eye contact. But it didn't stop her (although she did try to turn her body and hide so I couldn't see her do it). But I still saw. Punk.

The second girl just brushed her off and said, "Yeah, I know," and kept doing whatever it was she was doing. But the imitator kept at it. And the second girl got annoyed and said, "I knooowww" (in that "will you just leave it alone?!" kind of tone). So, good on her for indicating it's no big deal.

But seriously?! Making fun of a 2-year-old?!

I was angry, but mostly hurt. And all the while Sheridan had no idea any of this was going on because he was watching a dog play nearby (that boy is obsessed with dogs - we'll probably have to get one at some point). So I guess there's that, right? He didn't know, so wasn't hurt by it directly (meaning it didn't make him sad or hurt his feelings). But he still kind of was hurt buy it, you know? Somebody thought it was ok to make fun of a person with a disability.

Caveats:

Yes, I know kids are mean.
Yes, I know kids tease other kids.
Yes, kids get teased for many, many reasons, and don't have to have a disability to fall prey.
Yes, Sheridan will be teased for many things - both related and unrelated to Ds.
Yes, I could have just shrugged it off and vowed to start working on oral motor therapy even harder - but this would focus on changing Sheridan, not others' hearts.
I really didn't want to close the door on a chance to educate the girl, for Sheridan's sake if for nothing else.

So here's my question... what would you have done?

I SO wanted to call her out. So her parents could hear and maybe even get involved. Just say, "Hey, that's not very nice." Ok, it's not poetic or anything, but it's the nicest thing I could think to say to an 8-year-old (you should have heard the other options rattling around in my head). Everything else would have been totally inappropriate - but all kidding aside, I didn't want to squander a chance to turn this girl around.

But I have a really hard time recognizing what the boundaries are here, so I need some help. Where do I step in and say something to the child (remember, parents were right there), and where do I not say anything because it's the parents' responsibility and I shouldn't step on parenting toes? The girl knew she was wrong and I was glad I could at least portray that with my eyes if not with words. But I struggle with when it's ok to speak up (not just about teasing, about any incorrect behavior) to others' kids.

EDITED TO ADD: To be clear, I didn't give the girl the evil eye - I wasn't "mean" or rude about it. I just wanted to send the message that I saw her. I was really concerned about slamming the door on a teachable moment if I said something and the parents got all pissed off about it (you know me, I'm all about capitalizing on an opportunity to educate others). But I was afraid the parents would be offended if I said anything to the girl, etc. What I learned from your responses (in the comments and private emails I received) is that most parents would actually prefer that I say something so that (1) they can know what their child is doing, (2) the child has an opportunity to learn from the experience.

Sisterhood Babes

2011-03-20T11:05:00.000-07:00

I've been MIA from blogging due to a hectic teaching quarter, but I'm back now :) I have lots of updates, but this is the most gorgeous of all...

Local photographers Sharon and Scot Benton donated their time and talent to photograph 29 of the Sisterhood kiddos who sport an extra chromosome. It's all part of a project idea that came from Monica, and the Sisterhood is doing this project to raise awareness about Ds and raise money for the Down Syndrome Information Alliance.

More to come on the project over the next few months, but for now, just enjoy the preview. Little man makes an appearance at 1:46 :)

Oral Motor Eval with SRJ

2011-02-23T20:18:00.000-08:00

We were fortunate enough to have Sara Rosenfeld-Johnson in Sacramento doing an oral motor clinic, and we scheduled an eval for Sheridan. This video only shows the first two minutes where she is gaining his trust and getting his permission to let her do her assessment. Unfortunately, two minutes in there was a power outage (so that's all we videotaped), but check out his laugh when the lights go out. So cute :)

SRJ confirmed Sheridan's diagnosis of Apraxia. She said that his speech delays are mostly due to the Apraxia, and not oral motor deficits or weakness. To be sure, we need to work on jaw strength and some other things, but a strong oral motor therapy plan is going to help him overcome his Apraxia (it never goes away, people just learn how to talk and live with it) in conjunction with the specific speech therapy approaches we're using.

Accident Free!

2011-01-02T20:06:00.000-08:00

Sheridan hit a few big milestones yesterday and today... the biggest one: he didn't have a single accident today! Not one!

The biggest changes on Days 7 & 8:

1. Last night (Day 7), on his last trip to the potty before bed, Sheridan actually tried to pee (and was successful).

Why is this significant? Because all of his successes until that trip were about catching him when he's ready to pee. Meaning, putting him on the potty in regular intervals in hopes that he would have to pee when he was on the potty - or catching him early in an accident (or you think he's about to have an accident) and hoping he would finish on the potty. But he wasn't controlling it. He wasn't holding his pee (it just came when it came) and he couldn't pee on the spot when you wanted him to (again, it just came when it came).

But last night he tried and tried and tried to pee (I actually thought he was going to poop the way he was "pushing"), and all of a sudden he peed. I was so excited, but also a bit disappointed that this breakthrough happened right before bed. So we didn't have time to practice it a little more to try to solidify this new skill. I wasn't sure he would continue it today. But he did... all day!

Look at his Potty Board: 12 pees, 1 poop, and only 6 "Good Trying"

A huge difference from the past few days. In fact, he missed doing his "Good Trying" magnets so much that he wanted to put the pee and poop magnets up :) He peed more often rather than waiting until his bladder was full. So, it was in smaller amounts requiring more opportunities to empty his bladder.

2. Depending on how much liquid he drinks, he's going much longer between pees. Sometimes he has to go every 20-25 minutes (but that only happened a could times), but often he can stretch to 40-45 minutes (and sometimes longer). We do still put him on the potty, but depending on his fluid intake and how much he peed during his last trip we stretched him as long as up to 45 minutes or more before putting him on. But it's still a gamble :)

3. Late this morning Sheridan looked at me and sort of waved at me and said what I thought was "bye bye." But it wasn't his typical wave or way of saying bye bye. And then it dawned on me, "Sheridan, do you need to go to the potty?" He smiled, turned toward the bathroom leading the way, and once we were inside he closed the door (he likes his privacy), and stood in front of the potty waiting for me to help him. Within just a few seconds of sitting on the potty, he peed. I was so incredibly proud of him.

That means that he recognized he had to go (all other trips we just do "Potty Time" and tell him to try to pee), communicated it to me, HELD IT long enough to get to the bathroom and get on the potty, and released it on time. That's HUGE.

It only happened once, but I'll be honest that I didn't expect that to happen until later down the road.

I won't rely on that :) but it's nice to see that he's making those connections.

I know we still have a road ahead of us... I don't for one moment believe that we are accident free forever :) but on Day 8 - to see the difference between earlier this week and today - it's great to see the progress I knew Sheridan was capable of making. I should never doubt the boy :)

Things we are working on:

1. I have him help me pull up his underwear and pants, but I do 99% of the work. So, eventually we need to add greater independence in that area of self-help.

2. Again, I do 99-100% of the undressing, especially because he likes to take his right leg completely out of his underwear and pants. Eventually we'll work on the pulling down, and leaving his clothes on :)

3. Of course, we need to work on him communicating his needs more so we can rely on that. I haven't figured out how to do that yet, so I figure even if he just naturally does it occasionally he'll get the hang of it. And as we increase the amount of time that he goes between trips he'll have to work on that skill.

4. The big one, of course, is consistency. We had a phenomenal day today... I hope it continues (but I'm prepared for accidents). Eventually I would LOVE to be able to leave the house :) I'm fortunate in the sense that I timed this when I had some time off - so I could devote literally 100% of my attention on his bodily functions. I have no idea what I would do with other children, other responsibilities, and a houseful of carpet ;-)

Renewed Faith in the Potty

2010-12-30T20:58:00.000-08:00

Remember when I said I knew we would have better days and worse days? I didn't realize the worse days would happen so quickly. And so roughly.

I've had a lot of requests from people asking me to post updates on potty training, so for those who are not interested - and especially for those who are eating dinner in front of the computer - I suggest you move on. Potty talk isn't pretty...

Day 2 of potty training went really well. For the second day in a row he pooped on the potty and went first thing after waking up in the morning (and, by the way, I haven't had to change a poopy diaper since Saturday - that's worth it!). Then he had a few accidents, then a successful trip to pee pee on the potty. Then more accidents. A total of about 6 accidents. But then, all of a sudden, at 11:30am we hit our stride. He went from 11:30am all the way to bedtime with no accidents. Well, not entirely true - he had half of an accident... He walked into the bathroom and started to pee on the floor but I quickly placed him on the potty and he finished there. But still, 11:30am-7:30pm with near 100% success? I was really excited.

Until Day 3.

Day 3 was rough. R-O-U-G-H. Nothing but accidents most of the day. Only 3 successful trips to the potty the whole day. I was frazzled. I knew we'd have back and forth days, ups and downs, difficult days, but this? It sucked. I started to question my method, wondering if we're ready... I somehow made it through the day. I was whooped by mid-afternoon. Gratefully Gary is an awesome husband and dad - he picked up dinner, swooped in to help me out, and let me have some much needed relaxation that evening. I had no idea potty training would turn me inside out.

I wasn't frustrated with Sheridan, though. But I did start to question if this was going to work. But once again, truth be told, some of those accidents were my fault. Not taking him when my gut told me (thinking he could make it a few more minutes), or sending a quick work email (it'll only take a minute - yeah, and Buddy only needs 20 seconds to flood my hallway, so you do the math). Or, sometimes you wonder if he's doing something and it's a "sign" that he has to go. Sometimes you put him on the potty and nothing, so other times you decide not to put him on the potty and, well, puddle. He's still learning (obviously I am to), so his cues aren't going to be consistent. But I can be consistent - and that's what I decided to do.

And I started thinking about the silver lining in Day 3: Sheridan understood when he was having an accident. He would freeze, look up at me, stare for a few seconds, then look down and watch the pee, and look up at me. He definitely understands what's happening (when he was in diapers he would never even acknowledge he had peed). This awareness is HUGE in potty training. So I had to chalk that up as a success.

Day 4: honestly, not much better than Day 3. Four successful trips to the potty. Lots of accidents (some my fault - this is really hard for the parents, too!). But I remained consistent. And after a much-needed pep talk with my friend Natalie who's been through this with her boy recently, I decided I would add a couple things to our potty routine repertoire.

Sheridan LOVES the stickers he gets when he goes on the potty. So, I did a sticker shopping spree at Target. I really wish you could have seen the look on his face when I showed him the cupcake stickers (he chose the pink cupcake after peeing this afternoon). So, stickers are great motivators for him.

Today, we also added one Annie's Organic Berry Bunny Snacks (gummy bunnies) to the mix. So, when he is successful he gets 1 sticker and 1 gummy.

I also made a board for him to put magnets on even when he just tries to go. So, every time he sits on the potty for potty time, but he doesn't go, we tell him "Good trying, Sheridan! Good job... we'll come back and try again in a little bit." When he walks out of the bathroom, he goes to the board and puts a magnet in the "Good Try!" area. So, he's rewarded for each step, really.

The magnets are really small, but I guess the fine-motor workout is an added bonus!

We've been using the Poop and Pee areas of the board to track what he's doing. We were letting him put those on, too, as a reward. But decided it was too much going on (his OT mentioned that it might be too much - too many rewards can be confusing). So, he just gets his sticker & gummy when he is successful and a magnet when he tries.

And how did today go? Day 5 was good. An upswing. He had 5 successful pees/poop on the potty, and only 4 accidents. And you can see for yourself how many trips he made to the potty and gave a good try... it's a lot!

As you can see, little hands on the board all day make it tough to read. So, tonight I will recreate this with permanent markers. This will be our Potty Board for life :)

We are really proud of him - and us. But, at least one of those accidents was our fault again :) We just keep doing the best we can.

And, just FYI, we're not training for nap/night time. He wears a diaper for his nap (he goes to the potty right before nap time, then I change him into his diaper for the nap - as soon as he wakes up we go straight to the bathroom for the potty). For 3 of the 5 days we've been potty training, though, he was woken up from his 2-2.5 hour nap DRY. And he pees on the potty as soon as he wakes up.

We do the same at bedtime. He goes on the potty before his bath (sometimes he still pees in his bath), then into a diaper for bed. As soon as he wakes up in the morning we start the process all over again :)

So that's where we are. I have renewed faith in potty training, and I know that bad days are inevitable. And I need to not feel defeated and especially not question myself (easier said here than done during the day cleaning up pee). And we just have to keep learning together.

Oh, and an update on underwear... I had a few people remind me of the fabulous things you can find on Etsy, but because handmade underwear are so pricey, I decided to give a few new store-bought brands a try (although the stuff on Etsy is WAY cuter!). As a reminder, I don't want pull-ups or anything with padding/absorbent material - Sheridan was in cloth diapers and I think that would mimic his diapers too much. So, straight big-boy underwear is what we're after. Size 2T/3T is about all you can find in stores, but I found two brands that run small - small enough that if washed on hot, after coming out of the dryer they are perfect for little man. I found these boxer briefs (by Hanes) and these briefs (by Handcraft) at Target. But you can find them anywhere, and obviously online.

We Survived Potty Training

2010-12-26T20:31:00.000-08:00

...well, Day 1, anyway ;-)

In case you are wondering... he's a boxer briefs kind of guy.

As for the potty training itself... we put him on the potty as soon as he woke up (had a big success on that trip!) and then right into underwear. He wore underwear all day (we do put him in a diaper for nap and nighttime).

Sheridan had many successes throughout the day, going pee pee and poo poo on the potty a total of 7 times today! Here's evidence of his success:

He did have a handful of accidents (5 or 6) - so grateful for a house full of tile! But in full confession, many of those accidents were our fault - taking too long to get him to the potty (I was trying to quickly finish a phone conversation) or not leaving him on the potty long enough or not trusting my gut that I should take him right now even though it "wasn't time."

Today was our first day, our very first time trying this. So, we plan to see how it goes. We expect timing will become a little better for both Sheridan and us - by the end of the day he was signing he had to go (not every time, but he did ask a couple times).

I think our "pre potty training" helped a lot... we would put Sheridan on his potty (and sing to him, of course) when we knew he had the best chance for success (right before bath) just to get him used to the potty (which he loved right away) and help him be successful. So, he actually likes the potty - but at times his patience got a little worn at the end of today from being on so many times today (we used a timer and took him every 20-30 minutes).

I know we'll have days with more success, and days with more accidents. So we just need to be consistent.

We did have to bring back out his size 18 month pants. I knew his cloth diapers added some bulk to his body (he typically wears size 24 month or 2T pants), but I didn't realize just how little my lil man really is. Size 24 month pants sag WAY too much!

We still have a lot to learn :) but overall Gary and I think Sheridan did a great job on his first full day of potty training!

P.S. if anybody happens to know where I can find size 18-month underwear, please let me know! He's a little guy, and some of his underwear just slides right off his little butt (I can only seem to find size 2T/3T in the stores and online). But I'll tell you, plumber butt never looked so cute! ;-)

My Love & Thanks for My Healthy Family

2010-12-22T17:09:00.000-08:00

Merry Christmas from The Lindsey Family

Le Petit Paris

2010-12-09T09:19:00.000-08:00

I was so sad when this little Parisian Cafe in Sacramento went out of business... and I just had to have Sheridan do a photo shoot there before the cafe and its charm were gone forever. Three days before they closed their doors, they opened their hearts to Sheridan and his dear, dear Gracie Girl. Enjoy the show...

Gracie Girl

Gracie and her lovely mama

A big thank you to Michelle Marrone for capturing the beauty of Sheridan & Grace, and the last of the beauty that was Le Petit Paris :)

All Aboard the Polar Express

2010-12-03T00:02:00.000-08:00

Last night we took Sheridan to the Polar Express train ride in Old Sacramento. His Becca came with us (I thought she would really enjoy being a part of this for him, and as you'll see from the pictures below, I'm chopped liver next to His Becca - and yes, that is what we call her - Sheridan's name for her is My Becca, hence, His Becca).

In one hour we road the train from Sacramento, CA to the North Pole where we saw Santa and his elves, then back again. The conductor narrated our ride from the book Polar Express. Some of the characters from the book visited us on the train.

But really... I didn't care about any of that. In fact, I've never even seen the book before (or the movie).

I only cared about Sheridan's excitement. Talk about wonder.

Bundled up for the ride

Don't worry folks... this particular train was part of the props. Stationary props.

Everyone is encouraged to wear pajamas... so we did (and I had a moment of panic that Gary, Becca, and I might be the only people over the age of 7 to be in our PJs, but a lot of adults wore them, too - whew!)

Waiting to board the Polar Express

Looks like trouble

Sheridan isn't too fond of random conductors

But he loves the trains

Each car is decorated with a different theme - ours had all the misfit and forgotten toys

Eating oatmeal cookies (courtesy of the Polar Express)

Oh, and those spots on his head... he had a nasty fall about a month ago when he simply lost his balance, skinned his forehead (I nearly had a heart attack), but it's healing up really nicely.

The "waiters" came around with the book and showed the pages to go along with the story

He can't believe his eyes... seeing the North Pole for the first time

He was soooooo tired by the end - way after his bed time

See? I'm chopped liver :)

Please, God, Let Her Be Smart

2010-10-24T23:24:00.000-07:00

This weekend Sheridan and I took a trip to the grocery store (who am I kidding, we go almost every day). As I was lifting Sheridan out of the basket to put him in the car, I overheard three women in the parking lot talking (loudly) about their children, and about their pregnancies with said children.

One woman offered up, laughing, "My sister wanted her girl to be pretty. I didn't care about that. I just wanted my daughter to be smart. Please, God, let her be smart."

The other women laughed in agreement.

My heart sank a little. I was so disappointed to hear her say that. I might have even been a little mad, because of the inherent importance and superiority it displays of "smart" children over "not-as-smart" children.

But really, who doesn't hope for that? I had to check myself and cut the woman some slack.

Those women all had very natural, expected desires for their babies. I mean, really, who proclaims, "Please let my child have below-average intelligence"?

I know for a fact that Gary and I hoped - expected - our child to be intelligent. Most people do. Just like everyone hopes to have a "healthy" baby (which means overall general health, and also means no spina bifida, no Ds, etc.). Can I blame them (and us) for that? Absolutely not.

But it is an example of how we, as a society, place importance on - even rank order, if you will - human life.

And here's the kicker...

Sheridan is smart. He's very clever. He's certainly earned Gary's new nickname for him: Mr. Mischievous.

But most people will not see Sheridan as smart, they will only see his diagnosis. And his intelligence doesn't even matter. He's brilliant in many ways... his musicality, his empathy, his kindness, the list goes on... and so many people will miss all of it.

Yes, it is their loss, but in some ways it's ours (and especially Sheridan's), too. How many opportunities will he be denied because of traditionally narrow definitions of intelligence, and society's easy dismissal of those who who have an intellectual disability? It hurts me to the depth of my soul to think of others marginalizing Sheridan. Pushing people with intellectual disabilities into invisible shadows.

I have no doubt that if the woman in the parking lot had a child with Ds, she could rise to the occasion and would have a different perspective on her comment.

And just to keep it real here... as I mentioned, I'm not immune to these perceptions myself. On Sheridan's very first IFSP (when he was only a few weeks old), we were asked what our biggest concerns were. What were our biggest priorities? Here was our response, as written by Sheridan's service coordinator:

cognitive development

A whole big box full of room to list concerns, and that was it. Two words. The biggest concern for us at the top of heap.

The telling thing is, those two words haven't made the top of the list (or even been written in that box at all) since then.

[As an aside, all these thoughts, observations, and realizations remind me of a great post and the discussion that ensued (read the comments following the post).]

Steppin' Up for Sheridan

2010-10-22T22:09:00.000-07:00

Last weekend was the sixth annual walk for the Down Syndrome Information Alliance. Step Up for Down Syndrome is our way to raise awareness, advocate, and get the whole community together.

Last year was our first walk we ever attended, and this is how many of us "Sisters" there were (well our babies anyway!):

Look at those babies!

That's it. We knew four other families, and met Grace (far left) and her family for the first time at the walk last year.

And now? We have over 30 families in our Sisterhood... and I couldn't even get a picture our group was so big and scattered!

But here's what I did capture... FYI, the pics aren't very good this year - my camera is on the fritz and I was working the event so I barely spent time with my team, a mistake I won't make again next year :)

First, I have to share the DSIA walk t-shirt design (a big thank you to designer Carrie Dennis who made my vision for a great t-shirt come alive!):

Sacramento Fire Department came out to support our community, and Sheridan was thrilled with the fire trucks (especially those HUGE shiny wheels).

We started in the middle of the pack (you can easily spot Team Gabalicious in their orange and purple get-ups).

See those balloons? Those belong to a few Sister families who formed the Sisterhood team (some of us did our own teams, some joined as one huge consolidated team - it was awesome!).

Gabaliciousness...

One of Sheridan's favorite friends... Gabby!

And a Playette sighting!!!! All tutu-ed out!!!!

The littlest walker on our team :)

The coolest thing... this was Sheridan's first year he walked the walk.

Holding Nonna's hand.

Of course, his Becca was there to support him

And look who else walked her first walk! Grace!

And I do mean that she *literally* walked the whole walk.

She lasted about 5 seconds in Sheridan's stroller before she insisted on walking again.

Although at one point she did decide to take a break. Just plopped herself down where she pleased.

Sheridan walked maybe a third of the walk (on and off throughout the whole mile), but he was just as happy riding on Nonna's shoulders.

And he was eager to help Wes push his baby sister.

All in all it was a great walk. We raised money for an excellent organization that does so much to support the Ds community here. And we were thrilled to have so many friends and family (37!) come out to support Sheridan (and the entire community!) again...

Thank you to team GENETICALLY ENHANCED!

P.S. you know those babies I showed you from last year? FIVE of them walked the walk this year for the first time :) - and the youngest is on his way to walk-hood :)

Sheridan's First Patch...

2010-10-19T22:58:00.000-07:00

of the pumpkin variety :)

Today I took Buddy to a H-U-G-E pumpkin patch today. And some of his friends met us there...

He was stoked and ready to go (it might have something to do with the fact that I made up a silly song about going to the pumpkin patch and sang it the whole way there - hoping I wasn't over-promising the experience).

I had a cute fall-colored outfit ready to go, but Gary vetoed any outfit with orange. Apparently one is not to wear orange at a pumpkin patch for fear of the pumpkins competing with your stylishness. Whatever. Sheridan looks good in any color, so bring on the purple!

Aaaaaaaand he's off...

Of course, one must always check out the Cool Bus. Especially when you're totally cool.

He found his pumpkin in 15 seconds flat...

but I encouraged him to keep looking for something a little more, um, manageable...

Much better! Of course, I planned for us to pick out a pumpkin in the field, so we left this one here just in case he didn't find another one that lived up to his expectations.

But first, a train ride.

Waiting patiently for the train...

We all piled in...

We were there with Annelies & Marco, Gracie & William, RJ (a recent addition to our local group here!), Joaquin & Sofia, and other friends/family.

Meet little RJ and his mom Irma. Such a cute little guy... and so glad to have Irma in our Sisterhood!

Going through the pumpkin tunnel...

We saw horses, goats, pigs, tractors, cows, donkeys, roosters... and adorable little girls on the train ride.

Gracie Girl

We attempted a group kiddo shot, but this was the best I got. By the time the other kids were squeezed onto the bench, there were too many tears (from my little guy at least) for me to snap anything.

Now off to the field o' pumpkin.

Waiting for his very first hay ride, Sheridan was singing with his buddies as we waited for the tractor to take us out to the pumpkins.

"Slippery Fish" is a favorite around these parts - you can always tell by the "Ohhhhhh, Noooooo!"

Once we were underway, somebody got a little excited about it all :)

Somebody else was just as excited about her very first hay ride :) Sofia loved it!

And then we arrived...

It was HUGE. Enormous. No way we'd be leaving this place without a pumpkin.

Sheridan walked around a bit...

And then he spotted it...

His pumpkin. He signed "please" at least 20 times.

But then I realized he didn't want the pumpkin. He just wanted to sit on it. He's pretty happy about that seat.

He tried out a few pumpkin seats. This one was juuuuuuuuust right...

...for Grace to join him. He was pretty happy about that, too.

Grace on the other hand wasn't so sure about the new furniture.

So Sheridan tried to help her ease in to it.

But she preferred a flatter surface. Actually, all the kids loved the dirt, rocks, hay, mud.

Group shot! Sort of.

Then we hopped the hayride back to the farm where we ate yummy fall dishes like pumpkin pie and apple dumplings with warm cider sauce (to die for).

We caught a story telling session with Mother Goose and the three little pigs.

A few of us stayed until midday and played in the maze.

And what's a trip to the farm without helping them move some gravel?

Oh, and that pumpkin for Sheridan?

Totally forgot it.

Despite lots of opportunities to choose a squash or gourd of limitless varieties...

I completely forgot to grab the boy a pumpkin.

Between you and me, I don't think he noticed or cared.

Sheridan's Birthday Bash

2010-10-11T22:06:00.000-07:00

This post is long overdue...

Sheridan had 28 friends - TWENTY-EIGHT toddlers and infants - take over our backyard. It was SO much fun - I set up 9 different stations around the backyard so the kids would have lots of opportunities to explore and have fun. We had everything from moon sand to painting, water play to ball pits, handprint souvenirs to oobleck (which, by the way, was more of a hit with the parents than the kids!). The invitations told everyone to "dress to get messy" - and we meant it!

I'm not going to write much, just let the pictures (and there's LOTS of 'em!) tell the story :)

I loooooooove this cake!

Simple, yummy food :)

Party favors :)

We even had an infant play area for the babies!

Sheridan greeted everyone and walked them back to the party

Painting was probably the favorite activity among the kids!

The sand table was a good place for the little ones to congregate :)

Each child had a canvas square they could decorate however they wanted to take home as a souvenir

Moon sand - you can mold it, it never dries out, and always returns to "sand" - a weird consistency and great for sensory play!

Homemade, organic, oatmeal play-dough

We also had music at the party... as you can see, Sheridan was eager for the music to start!

I love how these three are playing together

Music time!

This is probably my favorite picture... here's Sheridan standing in the middle of everyone, shaking his booty to his favorite song. It's like he's on Solid Gold and he's dancing for a prize!

Nonna feeding Sheridan cake

Of course, his Becca was there

All in all, it was a fantastic party. It was so much fun. I'm sad Gary had to miss it, but I'm glad he insisted that we go ahead with the party.

The children love it. Some partied until they literally passed out...

Others didn't want to leave, even after 3 hours of hard play they were still going at it...

I'm just glad everyone had so much fun and Sheridan got to celebrate his birthday with so many friends!

Happy second birthday, Buddy!

10% Off at My Custom Story!

2010-10-09T21:02:00.000-07:00

To celebrate Down Syndrome Awareness Month, My Custom Story is giving you all 10% off any purchase made in October! You can even apply the discount to gift certificates!

Use this coupon code at checkout: CfLG082EEc

I discovered My Custom Story over a year ago - and immediately fell in love. They make super durable board books from your photos, your story. And when I approached them last year about doing a special discount for Ds awareness they jumped at the chance! They are so supportive of our Ds community here!

So why do I love them? Because Sheridan (and all his friends!) love them...

The first book I made had all family members in it, and had the words to the "I love you so much song" you heard me sing to Sheridan before his open heart surgery. Next, I created a book with all of Sheridan's friends in it. He loves both of them!

They are my favorite birthday gift to give - I create one with the birthday boy/girl on the cover and each page has a different friend on it. I even made one for Sofia's homecoming so she could learn about her new friends (you can see the cover of it in this post).

But you can make ANY book you want...

So go check out their new website - by the way, don't be surprised when you see a handsome little boy greet you on the home page :)

And don't forget, you can buy a gift certificate in any amount for 10% off - so if you don't think you'll have the time to get your photos/story together to make a book in the next few weeks, just buy a gift certificate and order the book later!

I love, love, LOVE My Custom Story!

Happy 100th Birthday, Grandma!

2010-09-29T22:35:00.000-07:00

Today is my grandmother's 100th birthday! Some might think it's sad she died just a few weeks shy of her century mark, but I say she gets credit for the full century! My grandma was born in 1910. 1910! Just think of all the "firsts" she experienced.

Here's my favorite first of hers... the first time she met Sheridan.

Yes, he was passed out in the moby wrap... but who cares?! Such a cute little Buddy.

Here's the celebration of Grams' life that I wrote for her... I think she deserves a little blog time :)

I love those hugs

2010-09-29T15:28:00.000-07:00

Eleven Criteria for Apraxia of Speech

2010-09-12T14:59:00.000-07:00

Many people have reached out to me asking about the "signs" of apraxia I mentioned in my last post. My time is still being ruled by the two men of the house, so I thought that the least I could do is slap up the 11 criteria for apraxia until I have more time to post about Sheridan specifically...

You all know I'm not a speech language pathologist (I don't even play one on TV), so keep reading with that in mind. Seek out a professional who knows apraxia if some of this raises an eyebrow for you.

Sheridan's SLP used the Differential Diagnosis for Childhood Apraxia of Speech assessment (adopted from Ruth Stoeckel, MA, CCC-SLP and David Hammer, MA, CCC-SLP, members of the Childhood Apraxia of Speech Association Professional Advisory Board - by the way, I found their Family Start Guide to be a useful overview).

Here are the 11 criteria, in no particular order of importance...

limited phonemic repertoire (e.g., limited vowel and consonant sounds)
frequent omission errors
predominant use of simple syllable shapes (e.g., “buh buh”)
reduced expressive language (speech) compared to receptive language (comprehension)
high incidence of vowel errors
increased errors on longer units of speech output
difficulty imitating words or phrases correctly
altered suprasegmental characteristics (A.K.A. prosody, or the patterns of stress and intonation in language)
impaired volitional movements
inconsistent speech errors (e.g., may be able to produce accurately a sound/word in one context but is unable to produce the same sound/word in a different context)
reduced/irregular diadochokintic rates (a person's ability to make rapid speech movements using different parts of the mouth; ability to accurately produce a series of alternating sounds)

Other signs often go with the diagnosis (but aren't enough to actually distinguish those who have apraxia from those who don't). One example is a loss of previously spoken words (e.g., used to say "baby" consistently but no longer says the word).

The Childhood Apraxia of Speech Association noted that SLPs do not demonstrate consistency in which characteristics they place more weight on than others in a diagnosis (so are some of the 11 criteria more indicative of apraxia than others?). It is not clear which or how many characteristics must be present for the diagnosis (I've seen a few sources say a child must clinically meet at least 8 of the criteria, but other sources say 7 or 9). Also, many of the cites I found indicated that children must have a decent repertoire of words before a diagnosis can be attempted (in other words, they have to have enough speech sounds and words in order to detect these errors).

I'll be posting more as we learn more... from what I have gleaned so far, oral motor and PROMPT (Prompts for Restructuring Oral Muscular Phonetic Targets) are important and critical therapies, especially when used together. And other strategies can be helpful, as well. Most important is that apraxia requires intensive one-on-one speech therapy.

Anyway, we're still learning and we're grateful for any lessons learned you can share. We'll certainly be sharing what we learn :)

Birthdays, Hospitalizations, and Apraxia of Speech, Oh My!

2010-09-10T20:17:00.000-07:00

It's been a while since I posted an update primarily because, well, like the rest of you, life gets crazy. Our crazy the last few weeks looked a little something like this:

ACT ONE
Sheridan celebrated his 2nd birthday and had an awesome party (that will get it's own post, thank you very much), but Gary was in the hospital and missed the party because... (drum roll please)

ACT TWO
Gary's appendix burst and it wasn't removed until 24 hours after it burst. Cue rampant infection, sepsis, almost dying (surgeon said if he had come to the ER even 30 minutes later he would have died), Sheridan developing behavioral issues because he missed his daddy so much, me trying to keep Sheridan's life as normal as possible (even though he would wander through the house to our bedroom calling "Dada" and "Daddy" looking for Gary), me trying not to pull my hair out, craziness. (A quick shout out to my family, my sisters, and one - make that two and three - close blogging friends from around the country for helping me survive the near loss of my husband - much love to you.)

After two weeks in the hospital Gary came home on antibiotics (the infection wasn't gone but the doctors had no better plan).

One week later he went back in after spiking a fever because his infection grew (despite 3 weeks on antibiotics) and he had another procedure to try to clean out/drain the infection.

Now he's home again (with a ~~nasty, foul,~~ way-cool drainage tube) and we're hoping the infection goes away and stays away. But this time he's in more pain and Sheridan doesn't understand why Daddy won't pick him up. Poor little man.

ACT THREE
And, as if this fabulous cake needed a big, heaping scoop of icing... Sheridan was diagnosed with Apraxia of Speech. Gary and I have suspected for some time, and we're not totally shocked by the diagnosis. I'm just sad. I feel for him. His receptive communication (what he understands/comprehends) is age appropriate, but his expressive communication (what he says, his actual speech) is really delayed. I will write a more detailed post about this, what criteria Sheridan exhibited - by the way, he exhibits 11 of the 11 criteria for an apraxia diagnosis - that boy scored 100%, just not on something we wished for :)

In the end, it'll all be just fine... Gary is on the mend and we are hopeful that this last surgical intervention took care of any remaining infection. And Sheridan is, as always, a very clever, silly, sweet, vocal little boy who just happens to call most things "buh buh" but can say "daddy" and "I did it" clear as day :)

I will leave you with this basic explanation of apraxia that was part of Sheridan's report:

Apraxia is a speech disorder that interferes with a child’s ability to correctly pronounce sounds, syllables, and words. It is the loss of ability to consistently position the articulators (face, lips, tongue, and jaw) for the production of speech sounds and for sequencing those sounds into syllables or words. It’s a planning/programming problem.

As a result, even though Sheridan knows what he wants to say, he cannot say it correctly at that particular time. Sometimes he cannot even begin. Either the wrong sound comes out, or many sounds are left out all together. At that time the motor plan is not accessible. These errors are not under Sheridan’s voluntary control so he often cannot correct them, even when trying his hardest. Frequently, a child will be able to produce a sound or word at one time and not be able to say it again when he wants to.

(Minor) Spider Surgery

2010-08-22T22:44:00.000-07:00

Remember Sheridan's first birthday cake? Well, my friend (and former student) Jennifer did it again... and she managed to outdo herself! (By the way, you really need to click on her link to check out her talent!)

Jennifer made Sheridan's birthday cake and shipped it to us all the way from Salt Lake City. Granted, it was a fake cake, but it looked like a real, decorated cake (it was actually styrofoam inside).

The theme?

Well, Itsy Bitsy Spider is definitely Sheridan's jam lately. I mean, from the moment he first wakes up, to during meals, to riding in the car, he is constantly putting his fingers together to make his spider. Letting us know he wants to get down to the best jam about a spider that was ever written.

And this year I didn't even need vodka to put the thing together.

Here's how the cake arrived when I unpacked it:

Some assembly required (notice the instructions and diagrams Jennifer included to make sure I didn't screw up)... the top spider:

The bottom spider:

And here's how it went down (c'mon, sing with me now)...

The itsy bitsy spider went up the water spout.

Down came the rain and washed the spider out.

Out came the sun and dried up all the rain, and the itsy bitsy spider went up the spout again.

Yaaaaaaaaaayyyyy!

Sheridan LOVED his cake... but this is just a teaser :) I'll have more birthday party pictures soon!

P.S. Yes, we did serve slices of real cake at his party.

Safari Guide

2010-08-18T18:24:00.000-07:00

I'm out of town today on Sheridan's birthday :( so his sitter Becca, her mom (Miss Sharilyn), and her dad (Mr. Jimmy) decided to take Sheridan to the zoo for a little birthday party! They love him. I mean, seriously loooooove that little boy. He's an honorary member of their family.

So what does one wear to the zoo on his birthday?

A safari guide outfit, of course!

Um, cutest safari guide EVER!

They sent me text messages and pictures throughout the day so I could be there with them in spirit.

His favorite part of the zoo...

The giraffes!

And the gift shop... apparently little man got a new lion book for his birthday :)

So glad he is so loved and had such a great day!

Introducing Sheridan

2010-08-18T00:01:00.000-07:00

Today Sheridan turns 2.

I thought it would be fitting to share our announcement of his birth. I had grand plans of ordering baby announcements, but adjusting to new parenthood meant I never had the time to really pick out a picture, an announcement, order them, etc., and after sending pictures and an email to over 200 friends/family just 4 days after he was born, we figured we had covered our bases :)

Here it is, word-for-word, including the images we sent...

**********

Hi, Everyone!

Gary and I are thrilled to let you know that our healthy baby boy, Sheridan Michael, was born on August 18th!

His stats: he weighed 7 lbs, 12 oz and measured 20 inches long at birth, and as you can see from the pictures below he has a ton of hair! He's perfect (that's our objective opinion and we're sticking to it!).

As some of you might notice from his pictures, Sheridan was diagnosed with Down Syndrome shortly after birth. Gary and I know Sheridan came to the right place... Who else can offer him the love and support we (and all of our family & friends!) can? We have access to great services in our area, and most importantly we know there are no limits to what Sheridan can accomplish. He is healthy, happy, and so much fun!

I apologize for taking so long to send out this announcement... Many of you have likely already learned that we had an extended hospital stay because I had severe bleeding after Sheridan's birth (I lost half my blood volume). I'm on the road to recovery now, but please be patient with us as we are slow to respond to email and phone while I continue to recover (and we adjust to parenthood!).

Gary and I are doing well and we're so excited about our new, growing family! Sheridan is truly a joy and I can't wait for you all to meet him!

We hope you all are well...

Love,

Lisa, Gary, & Sheridan

**********

Two confessions:

1. Neither Gary nor I "saw" the Ds features the doctor told us about when she gave us the diagnosis. But I didn't know any other way to break that ice... I debated whether or not it was "appropriate" to mention his diagnosis in his birth announcement, but I didn't want people to feel like we were hiding it either (because we weren't). And how do you mention it at a later date when we see/talk to somebody? Weird. So we just put it out there so everyone knew, and everyone would know how we felt about his diagnosis.

2. It amazed me to read this two years later. We truly meant every. single. word. we said in Sheridan's birth announcement; however, we were struggling with the diagnosis. I'm just in awe that I drafted this quick note as a placeholder (remember I was planning to send gorgeous baby announcements?) and that it shows the love, advocacy, support, and potential for Sheridan that I see today.

Maybe I'm psychic :)

We Get It

2010-08-15T22:23:00.000-07:00

My mom and I took Sheridan out to eat dinner last week at a yummy restaurant in Carmel.

We had a 25 minute wait so we sat outside (well, I sat while Sheridan walked my mom up and down the block a few hundred times - did I mention he's a full-time walker now? It's been too long since I've posted on his big accomplishments!).

Another family was waiting, too. A mom, her 16-year-old daughter, and her 2-year-old daughter Olivia. Olivia and Sheridan are the same age, and he was all about trying to play with her. He walked right up to her (and some of you know what a big deal that is!) and wanted to hang out... in brief spurts between walking my mom :) And Olivia desperately wanted some of Sheridan's snack (the hostess hooked him up with some fresh-baked bread slathered with peanut butter to help us survive the wait for a table), so Olivia was pretty interested in hanging out with Sheridan, too.

When we got a table (the hostess LOVED Sheridan so she got us in after 15 minutes) we looked up and saw that we were being sat next to the family from outside (now the dad had arrived and was sitting with everyone). And after we sat down I could tell the husband and wife were talking about Sheridan, but I figured the woman was just relaying the story of how Sheridan and Olivia were sort of playing outside during the wait.

As I looked at the menu, the father came over and squatted down next to Sheridan's highchair.

"It is no coincidence you are sitting next to us," he was kindly stroking Sheridan's hair, smiling at him, and genuinely pouring love out to Sheridan. "You're sitting next to a family who had two special needs children. We love children with special needs. LOVE children with special needs."

I immediately smiled, and thought to myself, "had." He told me that one child had died at age 1, and the other at age 12. He didn't tell me their diagnosis, and I didn't ask. This wasn't about diagnoses.

It was about love.

He said that those two children were the most precious gift they had ever been given, and all he was "left with is those two knuckle heads," motioning to Olivia and her big sister (tongue-in-cheek, sarcastically of course!).

They knew Sheridan had Ds (not sure why I'm always surprised when people "see" that Sheridan has Ds, but I am).

He said, "You know, other people look at you and think, 'thank goodness it's them, not me.' But they don't get it. They don't get how amazing these children are. How much they bring you...

But we get it. We get it."

It's rare to see that much love in a stranger's eyes, the same love I likely have in my eyes when I talk about Sheridan.

And I guarantee that they get it.

I Made It Out Alive!

2010-08-07T20:20:00.000-07:00

Today I participated in my very first triathlon with some of my sisters. We did it in relay teams, and I was responsible for my team's half-mile swim.

I'm not, shall we say, very athletic.

I didn't care about where we placed... I only cared about making it out of the lake alive. Seriously.

I do love to swim, though, and I trained with Jonna (who swam for the other relay team) 4-5 times a week trying to build up to the distance - for those who care, it's 33 laps in a standard pool :)

I beat my best time: I swam the half-mile course in 19 minutes! I was so proud of myself... and the best part was coming out of that lake and hearing my sisters cheer me on.

The worst part? Running up a freaking hill after the swim so I could tag Amber for the bike leg of the race. How cruel is that? Honestly, that short run was worse than the swim!

Here we are with our team shirts:

From left: Amber (Jonna's sister-in-law), Jen, Gina, Me, Jonna, Debbie

And here's the back of our shirts:

We made Amber an official, honorary member of the sisterhood!

We got a lot of compliments on our shirts... and Jen's eldest boys Diego and Mateo were our cheerleaders.

I survived. I had a blast. I want to do it again.

And because I simply want to share... here's a recent picture from a Sisters' Night Out - it's not our whole group (we have 24 or 25 of us total now!), but you can see how lovely they all are.

I love them.

Top row from left: Me, Sheree, Susan, Monica (and little Luke!), Sarah, Laura Beth, Renee

Middle from left: Susan, Cori, Debbie

Bottom from left: Jen, Jonna, Amy

Ruth Esther

2010-07-30T16:07:00.000-07:00

Today I decided to get in the pool for Sheridan's water therapy. I usually sit on the side of the pool and chit-chat the whole hour with his PT. But today, I took the plunge. Sheridan was eager to get in the pool early so I obliged by getting in so we could play for 10 minutes while we waited for his session to start.

And that's when we met a sweet, 70-something-year-old woman who was walking back and forth, slowly, along the side of the pool (I later found out she recently had hip surgery and was walking in the water as part of her recovery).

The moment she laid eyes on us she paused and watched us carefully.

As soon as we were shoulder deep in the water she stopped me and asked, "is he a Downs baby?"

"He has Down syndrome, yes," I said (always modeling person-first language, y'all!).

"Oh! I had a Downs baby, too!"

And I smiled.

That's when I learned about Ruth Esther, a woman who had Down syndrome, lived with her parents, loved gardening, and most of all, loved sewing. She was such an accomplished seamstress, she entered her creative pieces into the California State Fair and won a second place silver medal... twice.

I learned that Ruth died eight years ago at the age of 33 - very young. And I was deeply saddened for her mom. She said Ruth had "lung problems" her whole life and one night simply died in her sleep.

"If you have to go, that's the way to go. Trust me, I'm an old woman and I can only hope I get to go the way Ruth did," she said with a chuckle and glassy eyes.

She told me that Sheridan would be my greatest joy in life. The light who brightens my world.

I told her that he already is.

I Don't Know What It is About Dresses...

2010-06-22T14:53:00.000-07:00

but they must be the funniest things on earth!

Thank you to Michelle for capturing this... Sheridan LOVES shaking my skirts - and I love that we have a way to remember this quirky little toddler thing he does ;-)

First Bath (After Surgery)

2010-06-20T00:46:00.000-07:00

Sheridan's last scab came off today, so we celebrated with a REAL BATH!!! Poor boy was so tired of sponge baths (and we were, too, quite honestly).

He went to bed over an hour late because he was having so much fun splashing in the water. Thank you, Sheridan, for the strategically placed splashes in this photo...

...and the strategically placed bubbles in this photo (all while you were pretending to be on the phone). I'm telling you, that small patch of bubbles is PRE. CISELY. where it needs to be. I had no time for image adjustments tonight :)

Here's a slightly better look at his scar (a few of you have asked), 3 1/2 weeks post op (thanks for the precise bottle placement, Buddy)...

He was just so happy to finally get to ~~splash Mommy~~, ~~throw toys out of the tub onto the floor~~, ~~play like a silly goof~~, take a real bath. (Saved again by strategically placed waves in the water - which is a good thing given he stayed in the tub looooooooong after the bubbles were gone!)

He even had a present to help him celebrate this momentous occasion... bathtub crayons.

Sofia's HOME!!!!

2010-06-15T22:22:00.000-07:00

Sofia arrived to her brand new home this evening - to open arms and hearts full of love and joy! She traveled half way around the world from an orphanage in the Ukraine, to an adoptive family where she we will be loved forever.

The moment Jen, Hector, and Sofia came down the escalator... whew! Talk about water works...

Hi, Baby Girl!

I didn't take too many pictures (believe it or not), and the few I did take didn't come out great (some are really blurry) because I turned my flash off so it wouldn't be overwhelming for Sofia.

The Sisterhood (well, some of us anyway)

Sheree's sparkly sign :)

A little book I had made for Sofia as a welcome home gift so she could get a jump start on learning about her buddies

And then here she was! With her Nana :)

Snuggling Miss Sheree (Sofia is a TOTAL snuggle bug)

With Miss Jonna (my favorite picture of the evening!)

Miss Jenny

And finally... my turn!

I swear she's smiling here!

CONGRATULATIONS, SANCHEZ FAMILY!

And now... a bonus video of Joaquin walking :)

Right Before Surgery

2010-06-13T00:25:00.000-07:00

Ignore my singing and just focus on the cute little man :)

Rewind: 24 Hours Post-Op

2010-06-10T23:36:00.000-07:00

I promised more details about Sheridan's surgery, so here's the first installment - the first 24 hours after the surgery.

Rockin' the green toe nails on the day of the surgery - I had to represent with Sheridan's color!

The monitor in the waiting room showed each child's status (each child had a code that only the family knew). Sheridan is highlighted there (#2864) and next to his code it said "Surgery Start" - that meant that they had begun the actual procedure (incision was made). It was nice to have something where we could see some basic updates - but nurses and physicians assistants called to give us updates frequently, and a couple times even came out to tell us how everything was going.

left click to see larger image

Here he is, about 90 minutes after surgery...

...sometimes eyes closed, sometimes eyes open but pretty vacant (he was pretty out of it coming off the anesthesia, etc.), but he would make eye contact briefly, and even gave my dad and step-mom a smile when they went in to see him. I was expecting more of a "puff" factor - so many babies (and adults for that matter) can be pretty bloated after surgery, but Sheridan wasn't at all.

The only thing we didn't see was his breathing tube - they extubated him (took the breathing tube out) only ONE HOUR AFTER SURGERY. In fact, it took us longer to see him because they extubated him and he started rolling around in the crib, etc. - the nurse said he started doing "whirlies" - not sure what that means, but she was Australian so maybe somebody can translate :) They had lifted the sedation (you can't take the breathing tube out until people are "aware" enough to breathe on their own) - and when they did he just woke up and went gang busters on them. It took almost 90 minutes for them to get all his IVs, tubes, etc. transferred over to the ICU poles, devices, and monitors, and to get him settled in. Then we finally got to see him.

After Gary and I visited we let the grandparents and my aunt rotate in so they could visit Sheridan. You can see the surgical team attached his poster to his crib so the ICU staff would see it...

What they didn't know is that I had a different sign for the ICU nurses with a slightly different message :)

Lots of IV meds (e.g., calcium because "hearts love calcium" as his nurse said; milrinone to help blood flow through the body - keeps capillaries and small vessels dilated so blood flow is good and easy; saline). Lots of tubes and wires. And equipment to measure each chest drainage tube and urine output (top right pic below).

left click to see larger image

Sheridan had seven (yes, 7!) IVs: one in his neck (his central line), one in his left hand, two in his right hand (one was a regular IV, one was an arterial line in his wrist so they could draw blood, etc.), one in his left foot, two in his right foot. And see that glowing red big toe (bottom right)? That's how they monitored his blood oxygen saturation. That was the last thing to come off before we left the hospital :)

left click to see larger image

Sheridan spent most of his first 24 hours with a nurse dedicated entirely to him and only him. And we had a private room - I worked endlessly with the social worker, child life specialist, nurse manager, etc. to try to ensure he would have a private room. He is still sensitive at times to other children (especially when they cry or make loud, unexpected noises) and when he loses it, he LOSES it. And everyone was worried about what that might do for his pain and keeping his heart rate under control, etc. So, because they had space and no other child had a medical need for the private room, Sheridan got it. And the nurses were glad - they told the managing nurse, docs, and others that Sheridan was ULTRA sensitive to noise (they would just open a drawer to get something out and he would wake up and start crying) - so everyone agreed it was the best place for him so he could focus on healing and stay calm.

Here he is the morning after... smiling, playing, much more interactive... and enjoying time with his Nonna!

Because Sheridan was doing so well, they moved him to the Level 2 ICU (still in the same "ward" - just 2 rooms over from his first room - but now his nurses cared for him and one other baby). Before they moved him they took the cuff off his left arm so he could bend it and get more comfortable, and start using his left hand (although, he is right-handed).

In his new room he snuggled in with his seahorse (a Christmas gift he received from Becca) - it really comforted him, along with the BEST pre-surgery gift EVER from his buddies Joaquin, John Michael, Gracie, and Gabby. Read more about the quilt - it was truly a remarkable gift and kept Sheridan so secure and cozy.

The sleep you saw in those two pictures was pretty rare... he shared this new room with another baby - she was much younger and actually REALLY quiet (they had a patient who needed to be in isolation so Sheridan was moved to a new room with 2 cribs, divided by a half wall). It was pretty tough on him (and the nurses tried their best to protect him): it wasn't the baby, it was all the docs, and nurses, and specialists, etc. Sheridan's roommate had a LOT of people in and out around the clock and they don't try to speak quietly (why should they? seriously, I was never mad about it, that's just how hospitals are, but in the 24 hours he shared this room he slept no more than 1 hour at a time - and often he would be startled awake 5-10 minutes after falling asleep and then again 15 minutes after putting himself back to sleep - it was a nightmare because he was so desperately tired but couldn't actually get good sleep). But, we made it work and did our best to help him rest. I think they picked his roommate because she was such a sweet, quiet little thing :)

Here you can see where they took his central line out of his neck - I finally got the last of the sticky-goop left by the tape off TODAY (more than 2 weeks later)!

The next time he woke up I finally got to hold him! It was a traumatic experience, in all honesty. He was still hooked up to some IVs, had all but one of his lines still in, had both drainage tubes - the nurse tried to organize everything while I sat in the chair waiting for her to place Sheridan in my arms. He cried uncontrollably - the tubes hurt (they were his biggest source of pain the whole time), he was scared, the nurse was a bit frazzled (not in a bad way, she just wanted to hurry and find a way to get him in my arms so he would calm down and wouldn't be upset anymore). The nurse was struggling to make it happen - she had a hard time figuring out the best way to pick him up with so many tubes. I got so scared and anxious for him that I was freaking out. I told her to hurry up (I didn't want Sheridan to be this upset) and either pick him up and give him to me, or just stop and we could try again. I just needed him to be okay. Luckily she was able to scoop him up and I got to hold my baby - I was nearly in tears and he was so happy for me to hold him.

by the way, notice he's off the oxygen

they weaned him off oxygen in under 24 hours

There's not much you can do with a baby on bed rest and who is tied to machines, tubes, etc. We brought 2 suitcases for Sheridan - a large one with a bunch of toys, leg warmers, books, activities, snacks (for him and us!), etc. that stayed at the hotel, and a small carry-on sized bag that we used to bring what we needed (for him and us!) for the day. It allowed us to rotate books, toys, etc. to make sure we had something to keep his interest every day. Of course, a few favorites stayed in the hospital bag every day we were there, including Hooray for Fish! - he LOVES this book. And the little fish is on every page so when we ask, "Where's little fish?" he will point to it. Books and music were the biggest hits while we where there. No surprise, they are the biggest hits at home, too.

Next up: the next 24 hours, including the first peek at the scars...

And by the way, fell free to ask questions - ANY questions - especially if you are getting ready to go through this. I'm more than happy to answer them!

My HERO

2010-05-29T23:03:00.000-07:00

Exactly three and a half (yes, only 3.5) days after being rolled out of the OR into ICU, Sheridan was discharged from the hospital.

We walked out those front doors and he waved and said bye-bye (actually it's more like buh-buh-buh-buh-buh-bah, but he's working on it!).

funky picture of me, but I love his fresh-out-of-the-hospital-crib look

He slept the whole way home. And arrived to the BEST homecoming EVER! Becca and her family made heart streamers and decorated the outside of our home.

And filled the living room and breakfast nook with helium hearts, stars, and a monkey with a "welcome home" balloon.

Here he is walking with Gary to the front door (showing off our new landscaping we did a few weeks ago).

I grabbed a quick shower (trying to scrub the hospital off me, yuck), and when I got out I heard the tell-tale sound of crawling pitter patter. I couldn't believe it. Yesterday he didn't even have full head control back (more about that in another post), this morning he could barely sit without some support.

Yet this afternoon, within 10 minutes of being home, Gary laid Sheridan on his back on the ground, and Sheridan rolled over on to his tummy, popped up on all fours, crawled out of his room out to the living room, pulled to stand on one of his music tables, and pushed it across the room to walk.

HOW FRICKING AMAZING IS THAT?!

He is still a bit wobbly at times - still trying to regain his balance - and he's not quite as fast as he was right before the surgery, but he's only a little bit slower. This evening he just picked up right where he left off, really. He even helped me with the dishes.

He's even experimenting with standing independently for 2-3 seconds at a time, and he'll take an independent step to cross over to something he wants. It makes me nervous so soon after surgery, but so far he's doing fine...

Just a few more things before I sign off:

I apologize that I didn't do updates throughout our stay at Stanford like I planned/promised. I didn't have as much down time at the hospital as I expected (everything just progressed so quickly), the wifi throughout the hospital was spotty and even where I could access it the connection was painfully slow, and there were no electrical outlets for me to use in Sheridan's rooms (I stayed with him around the clock and outlets are for medical equipment only - they had them locked even if they weren't being used)
I have LOTS of pictures and information I plan to share about the surgery, Sheridan's progress, etc. So I definitely DO intend to share everything, it will just be little more retrospective than planned.

Also, I just want to say that we appreciate all of the love and support we received from you. There is no way I could have survived this without it - especially our family who traveled to be with us the day of the surgery, and my mom who stayed 4 days so she could support me and Gary. A special thank you to Jen, Monica, Sheree, and Jonna who created the best gift a little boy in need of lots of love and healing power could get. And to Jenni whose little ones gave Sheridan a fantastic care package to help him pass the time in the hospital - everything was put to good use!

We're not out of the woods yet... Sheridan's three biggest wounds (the sternum and two drainage tube holes) have to heal over the next 6 weeks or so. There is still a major risk of infection, so your continued support is much appreciated.

CVICU

2010-05-25T15:03:00.000-07:00

About 20 minutes ago we saw Sheridan as he was being wheeled into ICU I cried tears of joy I will post updates and pictures soon Just waiting to see him - they will call us back in 15 minutes CAN'T WAIT TO SEE HIM!!!!! Seeing his little curls go by was one of the best moments of my life!!!

Sheridan is in the OR

2010-05-25T11:18:00.000-07:00

Sheridan is in the operating room right now. The anesthesiologists are likely just finishing getting him ready for the surgeon (it takes about an hour before they are ready to start the procedure).

We woke up at 5:30 this morning to bathe Sheridan and scrub him down with the special medicated wipes the hospital gave us. We checked in to the surgery center at 7am. They almost immediately brought Gary, me, and Sheridan back to a room to check his vitals, change him into a gown (be sure to check out the super cute pics below - that boy can rock even a hospital gown), then we went to the playroom for the kids who have been cleared for surgery. After ~~tearing the room apart~~ playing for a while, we went back to the operating holding room where we met the anesthesiologists (both of whom Sheridan really liked). The plan was for Sheridan to have an oral sedative so he would fall asleep with us and then they would wheel him down to the OR after he was asleep. But he was so happy, and actually reached out to one of the anesthesiologists for her to pick him up. So, she did, he smiled, and she carried him down to the OR in her arms. He didn't even look back at us. That's when I cried for a few minutes, but then I was good.

Here's a few pics from our morning...

This is the poster I made for the surgical team. The anesthesiologists carried it into the OR for the whole team to see. Just a little reminder for them about who they are working for :)

Internet access is still pretty shoddy in most places. But I will do my best to continue to post updates throughout the procedure.

Quick update already :) The surgeon (Dr. Reddy) just came in to see us before he starts the surgery. He said he'll be starting in about 15 minutes. Lots of love to my brave baby!!!!

Surgery Check In: 7am Tuesday

2010-05-24T23:00:00.000-07:00

It's official. We're a go for tomorrow morning.

Today was pre-op (A.K.A. 6 hours of baby torture). Sheridan had an echocardiogram, an EKG, a chest x-ray, and (the worst of the bunch) blood test. He was over tired because he only got 9 hours of sleep (he's used to 12), we woke him up uber early for the appt, and people wouldn't leave him alone. None of the tests/exams is too bad by itself (except the blood draw), but put them all back-to-back and then ask the poor kid to meet with a seemingly endless line of nurses, physicians assistants, etc. afterwards and... well... there's only so much a baby should have to endure.

But he was a total trooper, and only had a rough time with the blood draw (his blood just stopped coming out of the first vein, so they had to poke him a second time in his other arm). Gary was holding him during it, but Sheridan cried so hard he could only breathe those stutter breaths, you know what I'm saying.

Here's the only picture I took during the whole ordeal (my mom holding him after I sang to him and calmed him down - of course he immediately wants his Nonna!)...

So, tomorrow we report for surgery at 7am. Gary said I'm not acting like myself. He said my stress is showing (I was stalling Sheridan's bed time to play with him and give him way more kisses than any baby should have to endure - it just so happens he likes it).

I will say the surgical team and anesthesia team did a great job walking us through the surgery step-by-step (I have to try REALLY hard not to let the tears come when we're talking nitty-gritty of the surgery). But I think he's in excellent, capable hands.

So, as I bide time this evening, just thought I would post a couple more pics from yesterday (our trip to Stanford) and today...

Sheridan playing with his ball pits (yes, he has two - a bit spoiled, but whatever).

His favorite part is throwing the balls out of the "pit" all over the living room. awesome.

Hangin' with Nonna (I'm SO glad my mom came down with us - it's been such a help to have three of us taking turns!).

Sheridan loving LOVING the hotel room. Especially the bit mirror wall.

Just for those who care (likely nobody, but oh well), here's our hotel room (Ronald McDonald House didn't have any rooms available, but as soon as they do we'll move there). Our room is very, um, orange.

Climbing on me...

Here's Sheridan recovering from the blood draw... eating an organic blueberry Cliff Z Bar to tide him over for lunch.

My dad and step-mom (Grandpa and Nanny Airplane) came down this evening so they could have dinner with us and be at the hospital all day tomorrow. So grateful they came down and we got to spend some much-needed time with them.

And Sheridan had a blast cruising around all the furniture in the room. He's getting pretty brave crossing large gaps (here he's crossing from my mom to the coffee table).

He even took an independent step a couple times tonight. I'm so proud of him! And he's pretty proud of himself, too! Here he is clapping "Yaaaaayyyyy!" for himself :)

It's all still surreal. I'm not gonna lie. I think Gary is right, my stress is over the top. Right now, I just know that I love him, that he is loved by MANY, and that he loves us all right back. I also know he will be okay. This is not my last night with him (as Gary reminded me after I said good night to Sheridan).

Thanks to everyone who is sending me emails, posting comments, writing notes on facebook, calling, sending text messages... you have NO idea how much it means to me. I'm not afraid or ashamed to say that I need that support right now. So, thank you.

One last thing... internet connectivity has been rough to say the least (both in the hotel and the hospital). But my intention is to post updates throughout the surgery tomorrow if I am able. I know how helpful others' posts have been to me as we prepare for Sheridan's surgery, and I'm hoping that anything I can share can help other families prepare. But if internet is down it might take a couple days... I refuse to type more than 4 words at a time on an iPhone :)

A Few Recent Pics Before We Go

2010-05-22T15:40:00.000-07:00

Just wanted to share a handful of recent pictures my friend Michelle took of Sheridan (she also took these pictures of us together). She is very talented, and wanted an opportunity to practice her photography skills... LOVE these!

Sheridan's Open-Heart Surgery

2010-05-20T21:09:00.000-07:00

First, a ridiculously adorable picture of Sheridan to put a smile on everybody's face before they read on...

On Sunday we leave for Stanford, we have a 6-8 hour pre-op appointment on Monday, and surgery is scheduled for Tuesday.

Many of our friends and family have asked for more information about Sheridan's heart defects, how they will be fixed, etc. So, taking a cue from Pudge & Zip's mom (thank you for all your support, Courtney!), I turned to the Children's Heart Institute of Virginia for a few images to help me explain (I'm a bit of a visual learner and I thought these were great)...

FIRST, A HEALTHY HEART

Think of your heart as a house with:

4 rooms (chambers)
4 doors (valves)
4 BIG hallways (vessels)
4 little hallways (vessels)

It would look like this...

VENTRICULAR SEPTAL DEFECT

Sheridan's got two of these suckers... basically, they are holes in the wall between the two ventricles. Here's what his heart house looks like (notice the hole in the wall between the bottom two rooms):

To repair his VSDs, his surgeons will use Sheridan's own pericardial tissue to "patch" the hole. Eventually his heart tissue and the patch will become one and grow with him. Here's the best way to envision that patch job:

PATENT FORAMEN OVALE (PFO)

In the cardiothoracic surgery world, a PFO and an Atrial Septal Defect (ASD) are essentially synonymous. The terms get used interchangeably. The PFO/ASD is a hole in the wall between the two atriums (the top two chambers of the heart). Here's what it looks like using the house (notice the hole in the wall between the top two rooms):

Sheridan's surgeons expect to be able to close the PFO with sutures. No patch needed. But just for illustration purposes, here's what his heart will look like after the sutures close the hole in that wall:

PATENT DUCTUS ARTERIOSUS (PDA)

This one is a bit different. It has nothing to do with the walls in the heart. The PDA is actually something that we are ALL born with, believe it or not. It's a critical piece of fetal blood flow. The difference is, most PDAs close naturally within the first couple days of life.

Sheridan's didn't close, so now what he has is an open vessel that connects the oxygen-rich blood in the aorta to the blood in the pulumonary artery (that takes blue blood to the lungs to oxygenate it). So, his pulmonary artery is carrying some oxygenated blood to his lungs. A big no-no.

Here's a healthy heart (images thanks to the Cohen Children's Medical Center in New York):

Here's a heart with a PDA:

Sheridan's surgeons will suture this hole, also.

So there you have it...

LOOKING FORWARD

I want to thank every single friend (including my blogging friends from around the world!) and family member that has reached out to us and shared their stories with us. Talking with parents who have had a child go through the same surgery has given us MANY tricks and tips to help us survive the waiting and healing, and most importantly has given us ideas about how to make Sheridan's healing and coping go as smoothly as possible.

I still have no idea how the surgical team will pry Sheridan from my arms on Tuesday morning, but I do feel that he is in good hands.

I will post frequent updates the day of the surgery and during his recovery at the hospital and at home. We know we have a road ahead of us, it might be short, or could be long. But I know Sheridan is super strong and healthy and will kick this surgery's butt!

Here's to rockin' the scar!

Self Advocate, Motivational Speaker

2010-05-16T22:38:00.000-07:00

Motivational speaker Robert Pio Hajjar was born with Down syndrome, and is the Founder of IDEAL-WAY.ca. You've gotta check out his presentation (he starts speaking at about the 1:45 mark). Thanks to my friend Shari for sending this my way.