06 July 2009

Whew... That's the Last Time I Take a Break!

This little (ok, long) break from blogging has taught me a lesson... Say no to long breaks. So much has happened that it's been hard for me to prioritize and organize what I wanted to post, in what order, etc. (Okay, so I'm a total Type A personality if you haven't figured that out.)

Although I have a couple of posts that I want to give special attention, I do want to provide a few updates here (and then I can get this monkey off my back!):

1. Sheridan spent the last month going through an assessment for music therapy. Remember, this boy LOVES music! Each week something different happens:

Week 1 - they just ask me a bunch of questions and look to see what Sheridan "does" (I guess how he acts, what skills he has, temperament, etc.) with no music. Um, didn't they get the memo that the boy loves music? Needs music? Let's get the show on the road here, people! I am thrilled the therapist is a young man - so glad to have a guy in the mix! - and he's a bit punk-rock, so he makes me feel young again :)

Ok, so I was very cooperative and answered all the therapist's questions. He brought an intern with him, a woman who just completed her degree in music therapy (I believe she said at University of Utah) - she shadows all of the therapists for a day and then chooses which children she wants to "take on" (meaning she will attend all of those kids' sessions for a few months). So, of course, after I've been a good parent and answered all of the necessary questions, I ask if it's ok to show them an example of how I've been using music to help Sheridan's speech/physical/occupational therapies. The therapist grinned and said he was willing to break the rules for Sheridan (there is some silly rule that NO music is allowed for the first two weeks of the assessment - I understand why, but I just couldn't help myself).

So I busted out with our rendition of Itsy Bitsy Spider. It's really cute if I do say so myself. And the therapist-intern combo were excited to see how Sheridan responds to music. And, yes, I know the therapy is for Sheridan, but I'm allowed to enjoy it, too, right?!

Week 2 - the therapist plays with Sheridan without music. But at the end, he broke out a couple of maracas and said he would break the rules again. Sheridan's eyes got so big! He'd never seen a maraca that large before! He's used to his little Kindermusic chikita :)

Week 3 - I was in Atlanta and my mom stayed with Sheridan. Finally... a session with music. But I missed it :( The therapist brought a guitar and apparently Sheridan went nuts. He loved it. He even tried to move closer to the therapist. Sheridan reached out and touched the guitar, and even put his hand over the therapist's hand to help him strum. So sweet.

Week 4 - they write a report and argue a case for why ongoing therapy is needed. Then they wait for approval (gulp!).

Tomorrow marks Sheridan's first, on-going, official music therapy session! And the intern has requested that Sheridan be one of the children she sees each week. Of course, I knew she wouldn't be able to resist him ;-) So, Sheridan will essentially have two music therapists (during the same appointment) for a few months.

I'm so grateful music therapy was approved given the financial state of our regional center - and the CA budget in general. Why vulnerable populations tend to take the biggest cuts is just ridiculous to me. But that's another post/vent.

2. Sheridan is now working on sitting on a stool. He looks like such a little man. You'll notice the pillow behind him, but he has never fallen backwards (he has, however, fallen forward when he gets super excited and leans to get a toy). My little man, growing up.


3. A few years back I worked for the Centers for Disease Control and Prevention, in the National Center on Birth Defects and Developmental Disabilities. Although I'm not longer "at" CDC, I am still leading a number of projects for them (for example, I'm currently leading the evaluation of their national autism campaign). I recently traveled to Atlanta for a couple of days (reason #1 for the long pause on my blog) for a meeting related to a project, and took the time to reach out to those people responsible for the agency's Down syndrome website. It is just plain awful.

When Sheridan was born in August 2008 there was NO site. So, at least they have a site up and running? Not good enough for me. It is your standard physical characteristics, co-morbidities, incidence rates, "a person with Down syndrome will likely have an ok life" kind of website. Ugh. Too many of those already exist and are SO depressing to parents with a new diagnosis. They need the website to reflect life with Ds (and that does, of course, include the co-morbidities, etc., but as we all know it is so much more than that). Also, I think (and so do some other parents) that some of the content borders on offensive (I won't go into details here).

So, if all goes according to plan, I might be volunteering to give them feedback - and more importantly, organize other parents' feedback - related to the site. If this happens, I will post something about it because I would LOVE to get your feedback so we can help them build a more useful site. Let's face it, the majority of people going to that site will be parents with a new (or potential) diagnosis. CDC needs to do better by them (but let me be clear... they didn't do a "bad" job on purpose, it's just the standard type of content they produce without any real input from key stakeholders who will use the info).

Soapbox is put away on this one... for now. I'll keep you posted if this moves forward.

4. My mom bought Sheridan his first pool... I've never seen such a small pool, but it's perfect for a little guy. Just enough room for him and his beach ball. He loves it. Although he still prefers to splash in the bath rather than in the pool. I guess it's more fun to splash mom and dad than it is to splash the grass.


5. Sheridan will be 11 months soon (on the 18th), which means we've already turned our attention to celebrating his first birthday. I don't even know how we got here so quickly. And in addition to being amazed at his upcoming toddlerhood, I'm stressing about the silliest things. Like his birthday cake. He's never had wheat. He's never had eggs. He's never had sugar. He has pretty much never had any of the ingeredients necessary to make a regular cake. So, I'm thinking of cancelling his small, personal cake and making one for him (I'm thinking a banana cake with blueberries in the middle). I probably shouldn't stress so much about the miniscule amount of cake that will actually enter his mouth, but I just want to make sure it's a familiar taste to him, that it is safe, and that he can actually manage to eat it (he's just starting to gum small lumps in certain foods).

6. Sheridan is teething something awful. Again. Still no end in sight. Poor little guy.

7. Sheridan took his first bath in the bathtub. But Gary felt he was still a little too small for the bath seat (and he still needs a bit of support sitting in water), so we're back to the sink again. But I think he'll move up to the big leagues soon.


8. Sheridan has developed quite the little strong will. I was telling his physical therapist about it when she came back from vacation, and explained that Gary and I joke about how Sheridan inhereted my/Gary's stubbornness (whose he inhereted depends on which one of us you ask!). PT smiled and said, "We call that self determination. It's an important milestone." Ahhhhh, yes. The good ol' self-determination milestone. She and I just laughed. I hadn't thought of it that way. So now Gary and I joke about each other's "self determination" and wonder what, on earth, Sheridan's self determination will look like at 2 years old if he's only 10 months now. Fun!

9. Sheridan is giggling like crazy lately. He's had a cute little belly laugh for some time now, but now it comes out all the time. I don't think anything could make me happier than to hear that boy laugh. On 4th of July he would just bust out into giggles when he looked at me. Maybe I'm funny looking, but I like to think he just thinks his mom is silly and he loves me so much he can't contain himself. That's my interpretation and I'm sticking to it.

5 comments:

  1. what a doll baby!!! that is awesome that you might be able to help the cdc with their Ds website. love the pics in the pool, too :) when in august is sheridan's bday - whitney's is August 25th... i do not know how it is even possible she is turning one soon!!! hope you have a great week!

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  2. what an exciting update!! WTG Sheridan. I am so excited that Sheridan will be getting MT once a week...awesome!

    awesome pics...he's grown so much since we last saw him :)

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  3. Great update. I know how hard it is when there's so much to write about. Strange that no music is allowed the first few weeks. I don't think our MT did that at all... guess she broke the rules. Darn! Sheridan looks adorable sitting up so tall and sporting his Ladies Man shirt. Funny.

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