Sunday, Monday, Happy Days

Sheridan has become very interested in time and days of the week lately.

He walks into our room every morning, gives me big hugs and kisses, then asks, "What time is it?" Given that "Too early," "It's still time for night night," and "Time to go back to sleep" weren't satisfying his curiosity, we put our little alarm clock by the bed and he loves to push the button, turn the light on, and tell us what time it is. And he's getting really good at it. He still doesn't have a full concept of time and telling time, but he's always using time landmarks throughout his day, such as "It's almost dinner time" and "It is breakfast time." And he will randomly tell us what time it is (without looking at a clock) - this past Sunday afternoon (around 12:30) he announced it was "six-oh-three-fifty-two o'clock." So, he's taken an interest and we're rolling with it. He's getting pretty good at reading a digital clock.

Then there's his new thing about on what days some things will happen. When he says goodbye to his Becca on Monday, he always reminds her that he will see her on Wednesday. And then again on Friday. Sometimes he'll ask to see one of his speech therapists after school, and I'll tell him, "You get to see Miss Jane tomorrow." Or sometimes he'll ask to do some activity but we can't do it that day so I'll promise him to do it tomorrow or on Saturday. He's become very interested in this concept of time, so I made him a little weekly wall calendar:

Seven individual squares that are velcroed to our living room wall - and I used a wet-erase marker to write the big events of the day. This way, he can learn the days of the week, and see what the big events are for the day (e.g., on Sunday he goes horseback riding with Amber and Shadow, on Saturday he has ballet and then a birthday party).

On Thursday he'll go to school, then see Miss Emily for speech.

Because he's been learning to read - and it is one of his favorite things to do - I figure this could double as a way to learn new sight words (at school he's learning to read via phonics, at home we use sight words and he is kicking butt in both methods). And I created little manipulatives that he can take on off to designate "today" and "tomorrow."

The other nice thing about this: my mom is starting to help me 1-2 afternoons a week when I need it (I'm on an informal order of rest for the remainder of the pregnancy). And this past week Sheridan would cry on some days when I would pick him up (because I wasn't my mom - he LOVES his Nonna). So, I can add my mom on the days she will come so he can know on what days to expect her, and on what days he should expect me (and hopefully decrease his disappointment at plain ol' mom walking in the door).

I'm sure preschool and kindergarten teachers will have plenty of critiques of my method (and feel free to tell me how to improve it), but I'm not trying to do anything rigid here. Just taking advantage of what seems to naturally interest him, and help him learn more about it. 

One final note... I had to move his beloved 1-20 number line to another location to make this fit in our living room. I've wanted to take it down numerous times, but every time I think about it, he starts using it for a new skill - lately it's been counting backwards from 20 to 1. So, back up it goes in our hallway, and my house continues to look more like a preschool than a home. But I'm ok with that.

Sheridan's First Year of School

I've been meaning for some time to write a post about Sheridan's first year of school. That will still have to wait... but for now, check out this quick video I made for his annual IEP (that's 4 months late).

I recommend viewing full screen so you can see better :)

Stay Put

The time for Sheridan's second IEP came and went without a peep from our district. No big deal in my book... Stay Put is in effect so nothing changes. Additionally, it just so happens that Sheridan doesn't need any changes made to his supports/services. So I was perfectly happy exercising his right to Stay Put. Given that this topic has come up quite a bit lately in some discussions I've had with other parents, I thought I'd write a brief post about Stay Put.

What is Stay Put?

Bottom line, it means the school district is obligated legally to maintain the status quo. If the IEP team (meaning, the parents, educators, district personnel, etc) cannot reach an agreement on a new IEP, the district must leave the student in his/her current placement and the current IEP (educational placement, services, supports, etc.) must continue to be fully implemented.

Here is the actual language from IDEA, Section 615 Procedural Safeguards [20 U.S.C. 1415(j)]:

Maintenance of Current Educational Placement.--Except as provided in subsection (k)(4), during the pendency of any proceedings conducted pursuant to this section, unless the State or local educational agency and the parents otherwise agree, the child shall remain in the then-current educational placement of the child, or, if applying for initial admission to a public school, shall, with the consent of the parents, be placed in the public school program until all such proceedings have been completed.

Stay Put can last for a few weeks, a few months... I've even talked with families who have used it for YEARS. Basically, Stay Put is in effect from the time a dispute arises (in our case there was no dispute, Sheridan's last IEP - written through 09-01/2012 - simply "expired" so to say, but of course, IEPs never expire because of Stay Put), to the time it is settled (that can be via agreement and signing of a new IEP, mediation, hearings, etc.). 

A Few Things to Note

• If your therapist or service provider changes (or any personnel changes), that doesn't necessarily constitute a violation of Stay Put as long as your child is receiving comparable services. 
• Stay Put is not specific to location. For example, if your child is fully included in her elementary school's 3rd grade classroom, switching her to a new school (while still maintaining her full inclusion status) isn't necessarily a violation of Stay Put.
• If the dispute is over the initial IEP (e.g., services, placement) then there is no Stay Put provision (because your child has no existing, current IEP with placement, services, etc.). 
• Things can get a little tricky if your child is transitioning (say from preschool to kindergarten, or from junior high to high school) - that makes it hard to define "current educational placement" because keeping the child in preschool or middle school is not a viable option, yet the IEP does not have an existing placement for kinder or high school.
• In some cases districts will request parents to waive their right to Stay Put if they are negotiating private school placement (just one example) - I'm not a lawyer and would never even pretend to give you legal advice, but I would strongly recommend you not sign any agreement that waives Stay Put. Just sayin' :)

This is obviously not an exhaustive list of potential implementation problems, and it's certainly not a thorough discussion of the Stay Put provision. It's always IEP season so I thought this might help in those instances where it's taking some time to reach agreement.

Back to Sheridan's IEP... I decided I would do the prudent thing and email his Program Specialist and request an IEP. Trying to be collaborative - on the up-and-up - and most importantly, giving my boy a chance to shine and show how great he's doing, how much he loves school, how much he's learning, that his support services are making an important difference for him, and that he is making an important difference in the lives of his teachers and classmates. The IEP is, after all, all about him!

He looooooooves his letters (& numbers)

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 :)

Overdue Apraxia Update

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:

1. Sheridan is working only on sets 1 (CVCV) and 2 (VC) at this point in time.
2. You'll see Jane using PROMPT when she uses physical cues to help Sheridan remember/feel how to make specific sounds.
3. 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.
4. 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).
5. Notice that Sheridan often leans into Jane so he can be prompted. 
6. He often prompts himself, as well.
7. I provide the sound he's working on, and the target word so you can get a feel for how this works.
8. 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 :)

Why Does He Need Therapy?

[A bit of a lengthy post - make sure you have a few extra spare minutes]

We recently changed venues for Sheridan's water therapy. We're now in a small outdoor pool at a local swim school. So, when Sheridan is in the water working with PT, two other children are in the same pool learning to swim with their personal instructors.

A young girl (okay, I'm really bad at judging kiddos' ages, but I'm gonna go out on a limb and say she is about 5 years old) was really focused on Sheridan and kept asking her swim teacher, "Why is he in therapy?" She was so interested in what Sheridan was doing, she wasn't focused on what she was supposed to be doing during her lesson (I, personally, think that is totally understandable - Sheridan is mighty cute in his baby speedos!).

Let's take a moment to acknowledge something: why exactly the swim instructors felt they had the right to disclose personal, confidential information about somebody (who isn't even their client!) is beyond me. But they clearly felt it was okay to announce to everyone in the pool that Sheridan is "in therapy." Truthfully, although I value privacy (so why do I blog?!), Gary and I are very open, forthcoming, and proud (weird, huh?) of Sheridan's diagnosis (that proud part is a whole other post for a later time). Here's my aside's point: although I think most parents would have been (rightfully) upset that strangers were disclosing confidential, personal information to other complete strangers, I wasn't mad at all. I would have preferred to have been given the chance to approve of this action (I think it's just simply respectful and courteous), but honestly I didn't even bat an eye - if any of the parents/children had asked, I would have gladly told them that Sheridan has DS (or is it Ds... I see it so many different ways). Alas, my aside is over...

Now Back to My Mission

While the young girl (let's call her YG - I know I'm really not creative with these pseudonyms) was in the water, I just let her instructor handle it. I didn't want to interrupt their lesson and you could tell he was pretty annoyed that YG wasn't paying attention to her lesson.

When she got out of the water almost 30 minutes later, she continued to ask her mother over and over, "Why does he need therapy?" and "Why does he keep doing that?" (I think she was referring to Sheridan's occasional tongue thrust - she probably wanted to know why he was sticking his tongue out so often, but as you'll see from the progression of this story I never had the opportunity to find out exactly what she wanted to know).

I politely waited to see how YG's mother would handle this. After all, YG was asking her mother. Not me. I respect that. But oddly, YG's mother just started hurrying her (e.g., "hurry and dry off" and "let's go, let's go, hurry"). She never once even acknowledged her daughter's questions. Hmmmm. Ok.

YG turned to me in the middle of all this hurrying and asked, "Why does he keep doing that?" (Again, I don't know what "that" is). She caught me off gaurd because I was intently watching Sheridan in the pool - um, did I mention how flippin' cute he is?


So, YG caught me off gaurd... I just didn't hear her question (at least, it didn't register until a moment later). I looked at her and said, "What did you ask me, Sweetheart?" She repeated her question while her mother looked even more hurried and was trying to talk over YG so they could leave. I asked YG for clarification, "Why does he keep doing what?" I genuinely wanted to know, and wanted to answer her question.

"Okay, time to go," said YG's mother quite loudly, effectively ending the conversation. She scooped up YG and off they went. Hmmm. Weird.

It was plainly obvious that YG's mom was nervous about this innocent interaction. What was puzzling to me was that she appeared to be more than nervous; she appeared to be very uncomfortable. I couldn't figure out why she was so uncomfortable with the subject of children with special needs. Why she really didn't want her daughter to talk to me about it. I really could not wrap my head around that. Then, a few days later, it dawned on me:

She probably wasn't uncomfortable, and probably wasn't trying to prevent her daughter from getting the information she clearly wanted... the mom was likely nervous that it was making ME uncomfortable. It was probably the natural reaction all parents have when their children say or ask something potentially embarrassing. I dunno. But I decided to give YG's mom the benefit of the doubt...

Fast Forward One Week

YG, bless her little heart, repeatedly asked her swim instructor and mother "Why is he in therapy?" throughout her entire swim lesson. I think her mom realized that she couldn't run away this time...

Again, I waited patiently. YG, after getting out of the pool, was asking her mother, not me (and YG's mother just kept saying, "because" - the answer ALL children rightfully hate). But this time I listened so I would be ready to asnwer any question she might ask me. And then it happened.

YG: Why does he need therapy?

Me: You know how you need help to learn how to swim?

YG: Yeah.

Me: Well, he needs help to learn how to do things, too. Just like it's hard for you to do the butterfly stroke right now, with practice, you'll be really good at it. He needs lots of practice, too. Some things are just a little bit harder for him, so he needs to work on them, and she [pointing to PT] helps him.
[Note: YG is currently struggling to learn the butterfly stroke, so I took advantage of the analogy]

YG: But why?

YG's Mother: Because he has Down Syndrome... [she looks at me and asks, "he has Down Syndrome, right?"]

Okay... I have to say I was a bit surprised the mom said that. First, most people, unless they have had experience with a person with Down Syndrome, don't recognize that Sheridan has DS. Second, it was really weird that all of a sudden she was down (no pun intended) with the conversation. But, I welcomed it.

I confirmed his diagnosis, and YG's mom said again, "He has Down Syndrome, so he needs therapy to help him" - a bit vague, but I'll take it!

There I was, ready to answer more questions. Ready to use this as an opportunity to educate both the young and middle-aged. Ready to use our amazing experience with Sheridan to help reduce the stigma around DS.

And Then the Stigma Reared Its Ugly Little (Big!) Head

YG's mother went on to say a number of things, just talking to her daughter about children with DS. Most of it was difficult for me to hear because she was talking so quietly at a relatively loud outdoor pool, but the few things I heard made me a bit uneasy (e.g., "can't do things on their own") - but remember, I couldn't hear her well so I'm not sure exactly what she told her daughter. At one point YG's mom looked at me and said,

"She's just not familiar with Down Syndrome. She was in special ed for a while and they didn't have any Downs kids. Well, maybe they did but they kept them all separate. You know, they need to be kept separate in school. And maybe they had their own recess and everything because it's hard for them to run with their walkers."

Okay. That's a stereotype you don't hear every day.

Again, I was caught off guard here. Clearly the mom had some experience with Down Syndrome - she must know somebody, or at least seen somebody, with DS who used a walker. How else would that be her "image" of DS?

I have to admit, I froze a bit. Was this a battle I wanted to fight? Especially because we're at the pool every week together? Or should I pick this battle precisely because we'll be at the pool together (more importantly, our children will be at the pool together)? I decided that her battle was NOT one I wanted to pursue. But that I absolutely wanted to make sure that YG had an accurate understanding of life with Down Syndrome, and Sheridan was the best person to teach her that, not me.

Before I could continue my conversation with YG, she was once again whisked off by her mother.

At our last water therapy session, YG didn't ask any more questions. I think I missed my window of opportunity.

But oddly enough her mother now thinks we're pals and she made sure to explain to me that YG was in special ed "until we realized she was gifted and that's why she was different" and then proceeded to tell me, "You just never know how things will work out for your son, he might not, you know..." [at this point she used her index finger to draw circles next to her ear, like you do for "crazy"]. "He might be able to do some normal things."

Wow.

Her misperceptions deeply saddened me. But it was a good wake up call, nonetheless. I know the stigma that exists. That Sheridan must fight that stigma as he grows up, every step of the way. Gary and I will certainly stand by his side, and most certainly we'll blaze a trail.

To some degree, her point is well taken - we can't yet know what Sheridan's capabilities will be in the future. But we do know that he is currently: beautiful, silly, funny, clever, outgoing (but does experience stranger danger on occasion!), sweet, tender, loving... and that Sheridan brings smiles, warmth, love, and PURE JOY to those who are enriched by having him in their lives.

Need proof? Here's a reminder...