It is called a hidden disorder because on the surface, Blake seems so "normal". We have heard this a lot from friends and family since his diagnosis. We have also been asked "whats wrong with him" to which I smirk and say "nothing". There is absolutely NOTHING wrong with him, that I can promise you. He is amazing and smart and hilarious and awesome!
So, let me take a few minutes and explain what Dyspraxia really is. Dyspraxia is a motor skill disorder. It is a neurological disorder that delays or impairs both gross and fine motor skills. Just like anything else in life, this can affect people differently. Some people with this disorder have different strengths and weaknesses than others with the same disability. Now, let me explain how it affects Blake.
First, the positives...Blake has and has always had very strong verbal skills (some people with Dyspraxia struggle with severe verbal delays). He has overcome some serious social obstacles and although he still has mild setbacks, we are leaps and bounds ahead of where we were even a year ago. While he does have sensory processing issues, they are not severe and do not affect his eating or ability to feed himself. Blake has an AMAZING long term memory. The things that come out of his mouth from "when he was 3" shock me!
Now, for the challenges and the biggest signs of Dyspraxia for Blake. Blake has an approximate 12-18 month delay in gross motor activities such as hopping, running, riding a bike, etc. He has weaker upper body strength than most kids his age. He also has a lot of challenges with pencil grip and fine motor skills like writing and drawing. They estimate he is about 18 months delayed in this area. He has had and still has (although MUCH better than before) strong emotional outburts and frustrations. Blake also struggles with poor short term memory.
All of these are SO fascinating to me. ALL of these "issues" and "mastered skills" were the EXACT reasons I knew something was up early on. Even though we lived it daily and could see these struggles and strong points, it was IMPOSSIBLE for me to list these traits to our doctor because I kept trying to group them into something that made sense. The truth is, Dyspraxia is more of a complex disorder than I was prepared for. It is hard to group these things when they are SO different, and yet they are are related!
See, fascinating!
Since Blake's diagnosis, we have started our therapy sessions. Blake met his Occupational Therapist Ms. Liz. From day one, I have LOVED her. As a mom, doing my best to tread water and help my son, she has made a point to listen with a sympathetic ear, but also be strong and honest with me and push ME outside my comfort zone. She has also pointed out ways, that even before we met her, we have been helping Blake...I am thankful for that. It was something I never knew I needed to hear so badly.
So, Mondays at 2pm...we are here. Children's Hospital Therapy Center in Broomfield working on OT and playing with Ms. Liz. I was nervous at first...she pushes Blake in different ways and I am just waiting for him to push back. This kid can PUSH. :) As we enter week 3 tomorrow, he can't wait to go "play with Ms. Liz". That is success in itself!
Now, of course we only get 1 hour a week with her, SO the majority of the work we are suppose to reiterate at home in the form of homework each day. I watch Blake and Ms. Liz during his OT session and she explains WHY what she is having him do helps. I have a whole new respect for this disorder because it is the opposite of black and white! We are learning SO much.
Here is a quick look into his first session and the things she had him doing:
Challenge #1 - climbing a rope ladder...not his favorite thing to do because it is not secure and moves. He has always been an overly cautious kid and this helps him trust her to help secure the rope. Once he climbs the rope, she has him problem solve how to get into the stretchy blanket hammock...each color gets more and more loose as he gets closer to the floor. The problem solving goes back to the lack of motor planning in this disorder. He has to learn how to figure things out. For most kids, it comes more naturally to put step 1 before step 2. For Dyspraxics, those steps get all jumbled up and can be frustrating...quitting is just easier. Once he figures out how, his reward is swinging in the top blanket! Next, he has to move to the blanket below without falling out of the hammock...lots of trust, communicating his needs and concerns, balance and overall coordination.
SEE! Fascinating!
The next challenge she had Day 1 was an obstacle course that included the balance beam! Looking back...he has NEVER liked the balance beam. In this challenge, he had to balance on his knees on this giant exercise ball, reach up and save an "ocean animal" and then go from the ball to the balance beam and walk it into the bucket at the end...go back, climb on the ball and repeat. Each time the ocean animal grew farther and farther up until he was standing on the ball!
Strengthening that upper body can be REALLY fun! Zip lining has become one of his favorite things to do. Each time we count and he tries to beat his last "score".
I LOVE how she incorporates fine motor skills with the gross motor activities...this time he had to do another obstacle course and when he found the missing puzzle piece, he had to draw it. They were basic shapes and he knows them well. Drawing them was easy but something he would NEVER do on his own. One thing that actually shocks me is the information about fine motor skill issues with Dyspraxics and how their little hands actually hurt when doing fine motor skills like writing and coloring. Blake often told me it "hurt his hand to color", now it makes more sense.
At the end of our first session, Blake made our homework chart for the week. She had him rip pieces of masking tape to tape two pieces of paper together to make a chart. Watch...
After EVERY piece was ripped, he would wipe his hands on his shirt ;)
Sensory...he's not a HUGE fan.
His homework for Week 1 was doing different animal walks at home (crab walk, alligator, snake, wheel barrow walk, etc.). Fun? Yes. Hard? Yes.
I left our first session feeling excited, ready, and fascinated. I will admit...this is HARD! Harder than I would EVER have thought! You would think finding time each day to do 5 animal walks wouldn't be so tough but IT.IS! Add to that visual eye patching for 2 hours a day and then the new Visual Therapy sessions and homework that started last week (that HAS to be another Blog post for another day) in addition to having two kids, work, marriage, and LIFE in general...It's been a bit nuts. Some days, we don't get a check on each walk...some days we do more to make up for the ones we missed before. We are striving to complete our homework each day and make the MOST progress we can! It is also bringing out a less than patient side of me at times, and that is something I REALLY want to work on. This ISN'T easy stuff for Blake and I need to remember that. The simple fact is, it's new, and I am trying to give us all some grace.
Through all of this, there have been "a-ha" moments. Moments when I look back and replay our journey and the path we took to get where we are. It is absolutely AMAZING to me how Blake has brought us to this perfect place just by being WHO he was designed to be. Let me explain...I have known from early on, Blake wasn't a HUGE fan of coloring/writing/drawing. THIS is a HUGE understatement! Being a mom and wanting what is best for him, I would push against that in the most fun ways possible (thank you Pinterest). Social situations with peers...that was a HUGE struggle. I made it a point to force the issue..I knew it was something he needed to work on and although I didn't know the cause and more times than not, it pushed me to mere insanity, I put him in social situations almost daily with friends in hopes that "practice makes perfect" would also apply to learning to share and manners and how to read others emotions and feelings...It's helped! It is hard for me to put into words what I am trying to say, but through our consultations and homework and my research online, one thing has been apparent...we have done a GREAT job! Perfect? of course not. But, the way we did things to help him (and lots of what has given me internal grey hairs at 29) even before we knew HOW we were helping him...it is just so apparent now. This disorder is TRUE to Blake. He has been showing us since birth and I am so glad we caught on and listened early on..according to the professionals helping us; we have helped him SO much already...he is mild compared to some. Even though our challenges feel like mountains, many of them are crumbling because we had a good head start before we even started OT or VT. What does that tell me? We are a perfect fit. Brian, me and Blake. The three of us have stumbled through and figured out ways to combat these challenges. And now? Now, we get more tools to help us!
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