Colten recently had his intake with Macomb ISD for their special education and EarlyOn services. As much as it’s interesting to see the reports they file, it still feels like a big stab in the heart when you read all the developmental areas they’re missing. Because when you live in the moment with this kid, it is SO easy to look past what he isn’t doing. He is just shy of 15 months and some typically-developing kids don’t walk until that age. It’s easy to look at him as still a baby and not worry that he isn’t cruising along furniture, or standing up on his own without support, or taking steps when held up to “walk”. Then you go through one of these intakes and it’s incredibly interesting to see the items they evaluate (can he stack blocks? point? crawl over things? put one thing in another thing? take it back out? does he laugh? get mad?) and then afterwards, how they interpret those items. But it’s heartbreaking. We all want the best for our kids. We want life to be somewhat easy for our children – or at least challenging enough to teach them a lesson or two as they go but not so difficult that it’s a struggle every day. I hope for Colten that his life is somewhat easy for him. And I think it will be. He doesn’t know his physical world or his body any other way than what he knows. Just like I would not know what to do if all of a sudden I didn’t have complete control over my legs, Colten wouldn’t know what to do if all of a sudden he did have complete control. He’s figured out his own way and he is so damn proud.
Colten is pulling up to stand whenever he can – usually it’s left leg dominant – the right leg just goes where it goes! But he does it – sometimes with his foot upside down, sometimes he gets his leg moved around and his foot will right itself. But every time he stands up – every time, he looks over at us (or whoever is in the room) with the biggest dang smile on his face. Like he’s saying, “Silly people. You forget that no one has told me ‘You can’t stand’, so I’m going to do it! Now CLAP and CHEER!” Seriously. That’s what his expression says. EVERY. SINGLE. TIME. He figured it out. Yes, we helped, and his therapies helped, but very very little in the grand scheme of things. His sheer determination to get UP is what drove him to do it.
As a quick family update – we finally moved the first weekend in December and have so many people to thank for helping us – our family members for taking the boys, and some of our lifelong friends (as in, I’ve known these people since 1st grade!)… we could not have moved everything in such a short amount of time without all the help they all provided – thank you to my Mom and Dad, my sisters, Kristen & Doug, and Dan (and Laura for letting us have Dan!). We still have a few stacks of boxes and we aren’t fully settled in, but we feel HOME and that is a good feeling. We love our new house and neighborhood and know it will be a great fit for our family for years to come. We just secured our new nanny that starts in January and are very excited to bring her into the fold. So of course that means more adjustments for the boys. They’re taking things in stride and absolutely love living so close to Grammy, Papa, their Aunts, Uncle and other family.
Back to the little guy. We’re still doing Physical Therapy through Beaumont and we were invited to their Children’s Rehab Christmas party a couple of weeks ago. It was incredible. It was overwhelming how many volunteers showed up to help, how many sponsors helped put this thing together, and how many families were there taking it all in. The generosity that poured through this party was too much. There was a point where my emotions seemed to get the best of me and I just couldn’t fathom why we deserved to be there, being showered with goodness. I know they do it “for the kids” – and the ones that were there certainly loved every minute of it. We had a wonderful evening and are thankful to all those that made it possible!
Back to the Macomb ISD intake – not too much more to report there. We have his IFSP (Individualized Family Service Plan) meeting in mid-January and services via the program will begin sometime after that. An IFSP is similar to an IEP (Individualized Education Plan), which school-age children get when requiring any sort of special/additional service or accommodations in the classroom. IFSPs are used before the child enters traditional schooling and it is more family-focused than an IEP. I hear horror stories of IEP meetings from my educator friends. I’m looking forward to this IFSP meeting because I recall learning the basics back when I was in college studying Deaf Education and am just intrigued as to how it will go.
The night we went to the Christmas party, a package arrived just as we were heading out the door and while I didn’t open it right away, I knew what it was and could not wait to get back home to open it! On one of the Spina Bifida groups I’m a part of, a mom had posted up that they were interested in passing along their daughter’s Bumbo wheelchair. Now because Colten is quite the crawler, we didn’t want to restrict his movement by strapping him into a chair when he is capable of moving about freely. So I went back and forth about it and finally decided to contact the mom. We exchanged some thoughts and in the end, her advice was to take the chair and let him play. It’s just another way for him to move and explore. This resonated with me, as I realized that our other kids had more options for movement and play when it came to ride-on toys and push-behind toys. There’s a whole genre of toys in our storage going unused because he can’t stabilize on them or propel them or even get onto them. Maybe someday, but not now – not at this time when the other two boys would have been using them. And that’s okay – he has no shortage of play things by any means. But “another way for him to move and explore”. It just hit me in the right spot and it made sense. It also made the mobile stander they’re trying to order for him make more sense.
I don’t want to lock Colten in these things for any long length of time, but I do want him to explore his world in more ways than just crawling. He’s getting curious – he wants to know what’s up on the kids table, or what’s in the bins higher up, or on the couch. He wants to get up eye-to-eye with us when we’re sitting on the ground. He wants to get at things just out of reach. And at the very least, I want him to have fun riding on things under his own power. It’s pretty cool to have wheels under you – whether those wheels are on skates, a bike, a scooter, or a wheelchair. Wheels make us go fast and that’s a ton of fun for kids. So we received the Bumbo wheelchair and while Colten has not yet figured out how to get very far, he does move the wheels and rock back and forth in it. His brothers learned VERY quickly how to move about, turn and do 360s in the chair! A benefit to them being so young and to Colten having equipment around him is that they’ll be more familiar and comfortable (I hope) around others using various aids. We are very appreciative of the donating family for building the chair and for passing it along. We will be sure to find a good home for it when we are done with it!
Just this past Friday we were down in Ann Arbor for Colten’s second helmet fitting. They’re recommending a closed-top helmet with more aggressive pressure front to back. This will help with the excessive elongation of his skull and help widen the back out a bit more. This is not something that is critical to his health or medical well-being, however, it is a growth pattern that they (the docs) and we are not pleased about. In most kids with this shape and issue, they would be growing out of it more by now and he just is not. So they want to give him one more chance to see if we can help it with a helmet. We should get it by early January, although they’re hoping to rush it through fabrication so it could be end of December when it arrives.
When we went for the measurements we were surprised to be notified that Colten’s new AFOs (Ankle Foot Orthosis) had arrived and he would get those that day! I still get mixed feelings with this equipment stuff. A HUGE part of me wants to keep it OFF him so that his brain never stops thinking about his feet. As soon as a brace is put on a body part and starts doing the work of supporting and aligning, the brain can stop trying so hard to communicate with that body part. So by putting on a brace, we are lessening his brain’s communication with the feet. We don’t like that. We believe that communication to the feet is something we have to work on the rest of his life. That stimulating them with different fabrics, pressure, temperature and input will benefit him in the long-run. Locking them into a brace means the brace does the work, it does the heavy lifting, not the brain or body. That being said, we do want the braces to help him experience other ways to move and different parts of his environment. So we take them to physical therapy each week – although we have not even used them the past 3 sessions! She’s doing other work with him (crawling up a ramp, crawling up stairs) that does not necessitate the braces or standing. Besides PT, he maybe wears the braces 2-3 other times during the week for 5-10 minutes.
So yesterday I put Colten’s new AFOs on him again. I was frustrated with them from the day before when I took him to a store to try to fit shoes on over the AFOs and came up empty handed after looking at about 20 pairs and trying on about 6 that seemed remotely close to working. They did not and we have NO shoes to put over these. They’re very slick on the bottom (his first pair had a piece of tread stuck to the bottom; these do not) and we were under the impression sturdy shoes were needed. The closest fit I got was from a velcro slipper at the store but even that would not fit! However, it led me to the solution I found yesterday. I put Colten’s AFOs on him because I needed him to wear them before his next PT appointment to make sure they are not causing any odd red marks. As I thought about the slippers almost working, I remembered I had a large bag of hand-made baby shoes with traction dots on the bottom from one of our Lansing friends (thanks Alicia). They were such a large size, I had tucked them away for later on. But pulling them out today, I realized I could take advantage of the large size and sure enough, they fit over Colten’s AFOs! They aren’t a sturdy shoe (although why a sturdy shoe is recommended is beyond me. The AFO should have the proper support regardless of the shoe), but they give him traction on the floor for when he tries to stand.
And try to stand is exactly what he did… and did he ever succeed!
Here he is pulling to stand and then STAYING STANDING and playing for a minute!!!!
Colten Standing in new AFOs [VIDEO – YOUTUBE]
THIS MADE MY YEAR!!!!! Not that he hasn’t made other accomplishments already, and he does move around GREAT. We couldn’t ask for anything more. Just something about seeing him do this… it just was awesome 🙂
That’s all for now – we are looking forward to a busy, enjoyable holiday – we hope yours is everything you dream it to be!