Versus

Most of the time Sheridan's developmental delays aren't a big deal. We don't really notice them 24/7. But at the same time we do, right?

I mean, his most notable delay is that he's not yet walking. He's highly mobile on all fours, and in all honesty, I'm not in a huge rush to race after him when he finally goes upright. I'm constantly chasing him as it is, so I'm accepting this delay for what it is and enjoying my last bit of freedom before Sheridan takes off running.

But, for the most part, if it weren't for assessments, evaluations, etc., Gary and I might not recognize the few delays he has right now. We don't have other children, so we have no true baseline in our personal experience. We don't know what Sheridan "should" be doing based on what his (nonexistent) siblings would be doing or did.

He's 16 months old now, but when he hits the magic 18-month marker all of a sudden he'll have a lot of delays - and any gaps that exist currently will be much wider. All because an assessment tool says that, on average, a child Sheridan's age should be doing - no, not doing... should have mastered - X, Y, and Z on the day he turns 18 months old.

And honestly, I'm cool with that. Totally cool with that. I get what it means to be average. Even "average" on most assessment tools is provided as a range rather than an exact number. And, I do know what it means to be "average" statistically. What "normal" means with regard to these assessments. That kind of language doesn't really bother me as much as it does some parents, I guess because I see it as the language of mathematics (I'm talking only about assessments and evaluations here, not about when ignorant, rude, or cruel people say our kids aren't normal because they have Ds - that's a whole different story).

Even though I'm totally cool with any delays, I have to be honest and say that sometimes I feel like I have to work extra hard. Not that Sheridan has to work extra hard, just me. That I need to provide more opportunities for him to grow. That I need to find more creative ways for him to play in a way that helps him work on various skills. I'm one of those parents who draws a line when it comes to "therapy" - everything we do is play based, taking advantage of opportunities as they arise, and it should never make Sheridan cry. We are definitely okay with challenging him, but we won't cross the line and say therapy must be hard and he has to cry for it to be working.

I know I put a lot of pressure on myself. I feel guilty if we spend a day running errands or eating out, etc. I feel guilty that I didn't spend enough time with him playing so he could (a) have more fun than hanging out in his carseat running all over town and (b) use play to work on his developing skills. Okay, so there's all that, but here's where it all really stings for me...

Sheridan versus His Peers Who are Typically Developing

Sheridan's delays are never more noticeable for me than when I hear comments from my friends who have a child similar in age - sometimes younger - who is doing things that are still in the future for Sheridan. And it's the little things, like a friend (months ago, before Sheridan was crawling) made a quick comment that her son (who is exactly one month younger than Sheridan to the day) had learned to open doors so she needed to do another round of baby proofing.

My stomach flipped and heart sank.

Because I had visions of her son running around the house opening doors. I saw him walking confidently, easily, quickly... even running. I saw him grabbing a door handle and rotating his wrist to open the door. I saw his excellent, effortless motor planning, motor control, balance, and speed.

Things Sheridan doesn't have yet.

It was so hard in that moment to not let that get the better of me. It was hard to think about Sheridan versus this other child. Where he is versus where other kids are. It just makes the mountain we're climbing seem a little steeper, you know?

Versus.

Why do we do that to ourselves? Or, maybe I'm the only one... but I doubt it.

The good news is that I rarely do this to myself. But it does happen, on occasion.

It never changes how I feel about Sheridan's delays - I know he will accomplish each thing on his own timeline. In his own way. And all I can do - all I want to do - is simply be there to support and guide him.

He leads, I follow.

I rather like the mountain we're climbing together.

A Very Musical Christmas

Sheridan loves music. Is drawn to music. Seeks out music. We sing to him every day, all day long. Poor boy... one day he'll realize what a poor singer I am and ask me to stop. Until then, I sing sing sing my heart out. And he plays all day long with every toy he owns that plays music (sometimes he plays 2 or 3 at a time - he's quite the Maestro!).

For these reasons (and because he absolutely loves and thrives in music therapy), Sheridan's second Christmas was FULL of music. He has enough instruments now that he will either (a) form his own one-man band or (b) form a family band.

My mom came over the morning of Christmas Eve so Sheridan could open her gifts (including a sweet set of wheels) and my dad and Gary's mom and brother came over to celebrate Christmas morning by having breakfast together and opening gifts.

Sheridan got everything from drums, a recorder, and zig zag blocks, to sandblocks, a xylophone, maracas, jingle bells, a parachute for musical games to... wait for it... a ukulele. He needed a child-sized "guitar" to go with our big family gift... an acoustic guitar.

I don't know what it is about the guitar specifically, but he is drawn to it. Almost obsessed with it at times - even during music therapy. Sometimes he tries to "escape" whatever we're doing in music therapy to sneak behind the therapist and strum her guitar. He loves it. Strum strum strum. He's actually getting quite good strumming the guitar, so we opted to buy one for the whole family (neither Gary nor I play at all, so I'm hoping to take a couple lessons to at least learn common chords in children's music).

One day, if Sheridan wants it, the acoustic guitar is his. That was my intention when I bought it. For now, he can enjoy strumming it... or strumming along with is ukulele. He LOVES his ukulele. Better yet, he loves strumming the ukulele, pausing only to bang the drum a few times, then returning to the strings.

I'm pretty excited about having so many instruments around for him. He's so happy and energetic exploring each instrument. Of course, one of his favorite things to do is "ride" in his big gathering drum while I push him back forth and spin him around while singing "row row row your boat..." - a little trick we learned in music therapy :) He also likes putting his Grover puppet in the smaller drum and pushing Grover around. Awesome.

I was bummed I didn't get more pictures of Christmas morning, but that just means we were having too much fun to take pictures! Here's what we did capture:

Merry Christmas!

I can never choose just one picture of Sheridan for our Christmas cards, so I do 2-3 different cards each year. You're lucky because you get to receive all three!

Merry Christmas, Everyone!

Our Local Ds Family is Growing!

It was so much fun... eleven families who have a child with Ds all got together at Jen's house for a Mommy & Me cookies, muffins, and tea party for the holiday. The children ranged in age from 5 days old (yes, you read that correctly) to 3 years old.

It was so much fun to get together, see the kids play together, cry at Santa (a very brave Santa who endured LOTS of pictures and crying babies, but plenty of happy babies who were thrilled to pull on his beard). It was so great.

Here's a picture of the group (names are below the pic):

starting at the top row from left to right
Mom Sarah & Eva, Sheree & Gabby, Me & Sheridan
Cori & Joey, Amy & introducing Delilah Rose, Jonna & Gracie, Jen & Joaquin
Monica & John Michael, Susan & Christopher, Jennifer & Madi, Michelle & Cody

Wordless Wednesday (overdue pics from Thanksgiving)