As I type, I’m hiding in my bed. The kids are watching tv and Matt’s grilling steaks. I’m tired. I anticipate being more tired tomorrow. Severe storms are expected to roll through after 11 and with those, I always find myself awake for hours with frightened children. Such is life, no?
Liam was awarded his Orange Stripe tonight in his jiujitsu class. I’m proud of him. We’ve been in a cycle of testing and analyzing and figuring out for months now and it was nice to walk in, sit down and know he would take his test and pass.
Yesterday, drove back up to the neurologist for a full report on the testing they did for him last month. As Liam has gotten older, the effects of his brain injury at 22 months have become more obvious. And as school has become more complex, I’ve been concerned. Overall, I wasn’t really told anything I didn’t already know, but at the same time, it confirmed that I need to make some changes to some things, but celebrate that others are exactly what he needs.
Liam was diagnosed with Generalized Anxiety Disorder last year and works regularly with a cognitive behavioral therapist. She has really helped his quality of life and while he still struggles a great deal, he is no longer obsessed with having a stroke, so for that I’m grateful. The days can be very long and on ones like today when he is pushed beyond his comfort (albeit for something valuable like a swimming lesson), he is miserable to be around because he struggles with re-centering his mindset and continues to function at a very tense level. At least 4-5 nights a week he cannot sleep for hours and I’m working on his routine to try and help the insomnia without having to medicate him for sleep.
During the evaluation, they discovered that he has a language processing disorder and ADD. I will admit that the ADD diagnosis took me by surprise. Even though I know he has trouble concentrating and is very unlikely to focus for any length of time, I’ve accepted that as part and parcel with the head injury fallout. It’s our life. However, medications can help to straighten out those neural pathways so that instead of his brain jumping all over the place, it can actually complete a thought or task now. Taking a pill was a hard task for him and continues to be, however, his medication has improved the quality of his life immensely (and by default mine as well).
Prior to medication, he would take 10 minutes to struggle through reading 3 sentences. Now, three weeks later, he is reading chapter books. I showed him how to “carry the 1” while we were doing math last night and he grasped the concept. And it wasn’t a struggle. We have been trying to help him adapt to the effects of a brain injury for 5 years, and finally we are on the right path.
Next on the docket though is to get a spine MRI done to check on the nerve development. His somatic response to pain stimuli is extreme and he is still highly monitored for intestinal function. He also is in for another OT/PT referral since the dyspraxia/hypotonia is worse having discontinued therapy. I also need to reassess his math curriculum to see if I can find something that is more effective for his learning needs. He’s been doing Saxon and is about 3/4 of the way through the second grade material, but he is not retaining the math facts. Anything logic based, he can do and do well, but when it comes to the rote memory, it’s not so hot.
I had envisioned writing this post with great joy and excitement that we had all the answers and knew what steps we were to be taking next. I don’t quite feel that way. Dyspraxia. Sensory Integration Disorder. Attention Deficit Disorder. Language Processing Disorder. Hypotonia. I have read the diagnostic sheet over and over. Each child is different and while there are recommendations, there aren’t set-in-stone steps… I want that, but I won’t get it just yet. Instead of feeling like all the proverbial ducks are in a row, I feel more like the ducks are headed toward the row. We can do this. We will do this.
In light of all, I decided to start documenting our life again. I’ve been wanting to return to blogging, but didn’t know what I’d talk about. Here it is: Life. We will beginning our third year of homeschooling in August, this time with a second grader and a kindergartner. Liam is learning to play guitar. Both kids are swimming. Liam is in jiujitsu. Sylvia is in ballet. Our garden is growing. I killed my sourdough starter. There are things to talk about and milestones to celebrate. So I will do just that.