IVH and Delayed Muscle Control/Development
Wesley had a Grade 4/3 left to right brain bleed/IVH at birth, which translates in simplest terms to the development of Cerebral Palsy (CP). CP is really just the loss of normal strength and voluntary control of muscles, and the degrees are wide ranging. Wesley is one of the LUCKY ones, his is on the mild side of the CP spectrum. Because his bleed was primarily on the left side of his brain, the delay and tightness is on the right side of his body.
In all honesty, I had resolved myself that Wes would never use his right arm/hand. He had never, in more than a year's time, consciously moved it. Then out of nowhere around 19 months old, he started to move his right arm to turn a light switch off (a task we practiced hand over hand for months). I went NUTS of course.... then proceeded to research endlessly and ask his therapists incessantly about how to get him to use his right arm regularly and why out of NOWHERE he suddenly started using it. Here's what I've found:
Your body develops from your core out to your extremities. Your fine motor skills (using your elbow, wrist, fingers, etc) develop through weight bearing, stimulation, and practice practice practice. To build those skills, particularly with a developmental delay, crawling and the crawl position are crucial, as are any activities that require the arm to be used at or above eye level.
The reason Wesley suddenly started using his right arm was because he was finally able to hold the crawl position and play in that position (weight bearing on that hand) for extended periods of time (it was a battle with him but he did it). Because he was weight bearing on the hand, the stimulation started working on his right arm from the core out, starting with his shoulder movement. FINALLY! And with the new found control of his right shoulder, he was able to start crawling with both arms, adding even more weight bearing to his daily schedule.
Although he's still not totally there yet, he can move his right shoulder and elbow with pretty good accuracy and with that he can control where his hand goes. He still can't turn his wrist or use his fingers at all to hold or manipulate things but we're getting there. His OTs believe Wes will develop the use of his right arm/hand
by blocking his left hand (with a cast). I somewhat disagree... I think restricting the left hand has helped make him use his right more, giving him practice and better coordination, but the weight bearing and muscle strengthening activities are where he's going to get the initial skill from and what's primarily helping develop his brain and motor skills.
SO, with all that said, here's what has worked for Wesley in the development of his delayed side motor development and what may work for you:
* CRAWLING - all day every day
* Holding the crawl position to play with toys (instead of sitting and playing, make them hold the crawl position to play. Even if they use their good hand to do the actual playing, they are weight bearing on their delayed hand which is what you want!)
* Light switches - every time you leave a room, have them turn off the light switch with their delayed hand, even if that means you do hand over hand with them. It doesn't matter if they're using their whole arm or their hand to turn off the light, any movement at or above eye level engages the shoulder/arm muscles and helps strengthen them!
* iPad games - Wesley is a HUGE iPad fan... put the iPad on the high chair or a table and have them use their delayed side to hit the screen. The higher the iPad the better to get them to lift their arm above eye level
* Reaching for you - this was a VERY delayed activity for Wes but when he finally got it we made sure he reached with BOTH arms, even if I had to reach down and grab his arm every time to show him. Again, lifting the arm up repeatedly helps them develop
* Shirts - putting a shirt on (make them put their arms through the sleeves, even if you help) and taking a shirt off, we tell Wes "put your arms up" before we slide the shirt off so he's lifting his arms up
* Basketball Hoop - We have a mini hoop over the back of Wesley's door and every time we walk out of his room we make him "dunk" by reaching with his right arm and grabbing the hoop. He loves it and he's lifting his arm, win win
* Security Code Pad - We have an old unused security code number pad in our house by our front door, so every time we walk by it he uses his right arm to hit the buttons. He loves it!
* High Fives - his daddy taught Wes how to do a high five right when he started using his right side. Even though he doesn't open his hand and he misses half the time, he still lifts his arm and aims for your hand. We only let him give high fives with his right hand and now it's so ingrained in him he only ever tries with the right hand, wahoo
* Book Pages - When I read board books with Wes I have him use his right hand to turn the pages. This is an easy activity to work on aiming his arm and moving side to side directions, plus it engages him while we read
* Toy Doors - We have quite a few toys with doors that open and close. One of the first things Wes learned how to do with his right arm was close the doors on his wooden block toy (one of the best toys for development we have)
* Car and House Doors - Every time we get out of the car Wes helps me close the car door with his right arm (with a little help of course). Once he started doing that we figured why not help with every door we go through? So now he closes them every chance he gets! This works with cabinets and drawers as well!
* Piano toys - Wes has loved these piano toys from the start for some reason! We have the Baby Einstein one and at 2 1/2 he still plays with it constantly. Whenever I can I make him use his right arm to hit the piano keys
* Lids/Caps - Wes has a complete fascination with plastic lids of ALL shapes and sizes. Because he has limited use of his right hand we have to pick activities that are simple when we practice using his right arm, and anything with a lid is perfect! As silly as it is, simple things like a Mentos gum bottle that pops open and closed works perfect
* Walkers - Similar to the piano toys, the walkers that have toys on the front of them are ideal. We pulled this guy back out after retiring him once I realized Wes just needed toys he could use his right arm to hit buttons with
* Pop Up Toys - We had an old one of these from a garage sale that Wesley loved. These are great for all kinds of hand manipulation skills but what really worked good for Wes was putting him in the crawl position and letting him hit the buttons with his good hand (weight bearing on his delayed hand), then making him push the pop ups back down with his delayed hand!
* Songs - Wes is a LOVER of music, and especially singing. The first game he ever played using both hands was patty cake.... his own version at least. He ends up clapping by bringing his left hand TO his right hand more than actually moving his right hand, but he has to hold his right hand at mid-line for the left to hit it and it ends up working for him. He claps through most of the song, then lifts his hands up in the air for the "put it in the oven for baby and me" part. The second song he learned was Itsy Bitsy Spider and similarly he claps his fingers together for most of it, but lifts his arms for the water and sunshine parts so it works! Since then he's learned the Wheels on the Bus, On Top of Spaghetti, and a few others! Music and nursery rhymes are a big win in our house!!
I'm sure there are a few more things that I'm not remembering right now so I'll repost if any come to mind! Thank you to ALL the resources out there (primarily our therapists and online development websites) for giving us ideas to try with Wes! At the end of the day I also think just KNOWING he will do it, and making sure HE knows he can do it, makes the biggest difference. Having expectations and push push pushing him every day has moved worlds for Wes.... and of course, lots of patience :)
