Each of my boys have their own personal challenges we try to help them everyday to cope with and overcome but Justin’s challenges may be the hardest to overcome since they are physical more than emotional. He has Apraxia. In a simple, short definition, his brain and muscles don’t talk to each other – at least not regularly or in any predictable pattern. His speech therapist told us his speech therapy would progress very slowly and it was a long term project. She was completely right. It’s not just his mouth though. It’s his entire body. We’ve worked hard to build his core muscles to help him walk up stairs upright instead of like a toddler using his hands and feet. We’ve also (for the most part) gotten him past falling out of his chair randomly almost every time we sat down to eat. I didn’t realize how much we had grown accustomed to it until we were at a nice restaurant one night and Justin fell out of his chair and not a single one of us (including Les or myself) reacted to it but saw all the heads sitting around us turn to see if he was ok. I felt horrible! But…Justin in his normal routine, popped up off the floor and declared to everyone, “I’m ok!” and sat back down. It wasn’t like he wasn’t sitting on his bottom either. He could be sitting completely on his bottom and the next second he fell and was on the floor. His body just works like that. His muscle strength is incredibly low for his age and we encourage all sorts of play to build his muscles as much as possible. Recently, I’ve discovered a new one. He has NEVER been able to look me in the eyes when I talk to him. Not even when we got him when he was 12 months old. He will dart those eyes back and forth so fast you’ll get dizzy watching him – but it’s only when you’re talking directly to him. I thought it was completely part of the reactive attachment disorder but I’ve learned now there’s more to it than that. This year I’ve attempted to teach him to read. Oh my. His eyes can’t/won’t look at the word he needs to sound out on the page. They will go everywhere but the word he needs to sound out. It’s not that he doesn’t want to learn how to read – his big brothers know how and I’ve promised him I will teach him how to cook when he can help me read the recipes. He’s motivated. His eyes just cannot look at the word. More therapy schooling – which I secretly enjoy. (If my life’s situation suddenly and unexpectedly altered, I would be an occupational therapist.)
We have had to teach him literally how to chew and swallow too. We’ve had to do countless exercises strengthening his lips, tongue, and cheeks. We’ve been working on all of this for six years now. He’s made progress but we still have to remind him to chew his food instead of swallowing it whole and we can understand him when he talks to us now – unless he decides to mumble because he forgets to open his jaw/lips when he talks. I can’t tell you how many years I translated for him to not only our immediate family but anyone who talked to him. I never spoke for him only translated when necessary. Now he’s progressed to the point that when someone can’t understand him, we do speech exercises on the spot to get him to say it correctly until the person he was talking to can understand him. Even I couldn’t understand him when he was younger if he wasn’t saying just a few words at a time. If he tried talking in sentences, it was complete gibberish. So, therapy works but it’s frustratingly slow for him.
In the past couple of years, we’ve learned that both sides of his brain do not always speak to each other either. There are days where he seems completely “normal”. Then there are days that he can’t tell you his full name (he’ll give himself Zach’s middle name & quite seriously too), cannot count properly, or tell you his letters – he’ll be 8 this summer. Those days are hard and we have to stop any work that is beyond basics and revert to going over basics again for the entire day. Between Les and myself, we call them “good brain days” and “not good brain days”.
So a long introduction to a project I started yesterday with my sweet, little Justin. Ever since we got him at 12 months old, he has liked sticks and everything having to do with nature – but especially sticks. I decided to do a garden project with him to work on fine motor skills, following directions, and working on something he absolutely adores to get him out of the slump of always being frustrated that it takes him a long time to learn something.
In the spring, he is always right by my side as we prep the garden and plant seeds. He has been weeding my garden for several years now (the other kids help but with plenty of moans and groans). He’ll walk around the garden beds and watch all the plants grow and he can tell you most of the plants even from a seedling. By the time fruits and vegetables are ready to be harvested, the other kids have pretty much lost interest but not Justin. He’ll monitor all the fruits and vegetables and tell me how many I have and he’ll beg to pick them when I’m making dinner.
He’s always going to have a hard time learning higher level subjects. Therefore, I intend to train him on how to garden and cook. If nothing else, hopefully he can get a job working for a landscaping company or something.
You’ll see here, he is resting his head on his hand. This has nothing to do with being tired or just relaxing. He doesn’t have enough strength in his neck to hold his head up constantly. Zach’s muscle tone is even weaker than Justin’s. I had to keep reminding Justin to use his neck muscles instead of letting his hand to do the work for his neck.
Working on writing.
He used one of my seed catalogs to pick out his four favorite vegetables, fruits, and herbs.
I’ve used the Square Food Gardening method for years and it works really well for us. I’m teaching Justin how many seeds of the plants he picked out go into each square foot of the garden. He’s making dots for the seeds.
More fine motor skill practice
The beginning of his project displayed on his bedroom wall. He was sooooo cute after he hung up his work – so proud! He called Les in to look at it and explained everything to him with a huge smile on his face.