The Bad News:
I spoke with the doctor today and had two pages of questions to ask. First and foremost, Devon has had basically what we would call a stroke. He must have had it at birth or soon thereafter. He is not likely to have any more. He has what is referred to as White Matter Lesions. We will have more tests later to determine any future stroke problems.
The damage is irreversible and cannot be fixed. He will continue to improve in his learning and language. However, there may come a time when he will ‘cap out’ and not improve anymore. This is a big maybe. Only God, time, therapy, and Devon will determine that.
He does have difficulty processing incoming messages and comprehension. This does affect his cognitive functions. It does affect his motor skills.
The Good News:
There is lots of therapy available. Once we get the neuro test taken, we’ll know exactly which kinds to focus the most on.
He is young and learning and improving everyday. The more we work with him the better he will be.
He is bright, very smart and wants to do good.
He’s in a stable home, with folks who will champion his cause.
He has a great team of doctors working to help him in any way.
We are to continue pushing him to improve and encourage him to learn. We cannot give up, nor can we allow him to.
He can have a normal adult life and contribute to society, we just have to work hard to help him get there.
The Work To Do:
He needs a neuropsychology test. This is highly important to find out exactly where the disconnects are in all his language, motor, physical and sensory skills.
He needs occupational therapy.
He needs social training/ADL’s.
He needs speech therapy.
He may need to change schools.
I have to learn ‘the system’ so I know what the schools should offer, and what to expect from them, and how to insist I get what Devon needs. I need to learn about 504 services.
Bottom Line:
He’s not sick. He is not a baby. He is not disabled. He has minor brain damage from a stroke (something infarction). The doctor specifically stated that I/we should not cut him slack and permit him to ‘get by’. He’s to be pushed, encouraged, challenged to do better and to learn just like every other kid. Even if it’s small, as long as he’s learning — he’s improving and getting better. But, he needs patience. He won’t learn like you or I. I just have to be creative…what doesn’t work needs to be evaluated and changed so it makes sense to him.
Talking baby talk or ‘down’ to him is a huge no-no. It makes him regress and should be avoided at all costs. He is not ’simple-minded’ so don’t talk to him that way. He understands everything you say but in some situations may not speak because he’s shy and doesn’t know how to communicate clearly. Social therapy will help him with that.
The doctor did not think home schooling would be a good idea. He needs the social interaction with other kids.
Conclusion:
The neuropsych test may not be covered by his insurance. If not, it’s going to cost somewhere between $1600 and $3000. I will keep you all posted and if it won’t then we’ll have a cake sale or something.
I’m sure there’s more, but I was there an hour or more and we covered a lot of ground. This is the crux of it. When I got home Devon declared that he likes having the flu. When I asked why, he said he liked being pampered like the king. Ahhhhh….I love that kid!
