My son didn't get any of the usual tests until much later because pediatricians we saw at the military base told us it wasn't necessary and we could not get the necessary referrals.
When my son was one year old he was tested by a therapist with Sooner Care, which was free, and we were told he had a 50% delay in motor skills but was 50% advanced in receptive and expressive language. They required a permission slip to be signed by his pediatrician at the base before they could give him therapy. The pediatrician refused to sign it and sent us to a neurologist who looked at my son for 10 minutes and said it wasn't CP but possibly a mild myopathy and we would have to wait to see a specialist for that, but there was a long waiting list and we didn't get to see the specialist. My son started walking at 18 1/2 months so his pediatrician felt that he didn't need to see anyone else.
The pediatricians at the base told us the mild hypotonia wasn't anything for us to worry about and they focused more on how bright he was at all of his checkups, as if a child could not be both bright and have a physical problem that required therapy.
When my son was in kindergarten we explained to the teacher that he had low muscle tone and fatigued more quickly than other children and even though he read at a fifth grade level and could do some mental math, she felt he needed an extra year to develop his motor skills if he couldn't learn to color in the lines better. My child was not eligible for OT at the school for his disability because he was academically advanced. This was confirmed by our state department of education when I called to complain. So my son could not get OT through our insurance because we couldn't get a referral and he couldn't get it at school. At the same time this was going on my husband was diagnosed with cancer and he was given a 50% chance of survival. Our co-pays for my husband's cancer treatments ate up our savings. What were we supposed to do?
When the school told us to homeschool I felt I had no choice and I did the best I could do even though I was worried about my husband and was sometimes responsible for watching my severely disabled mother, who lives next door and was being taken care of by my dad because nursing home care is over $50,000 a year. So add to all those worries, the total fear of ending up like my mother if I ever had to have surgery. Then add the fear of cancer that I developed when my husband went through painful radiation therapy. Yes I had anxiety and I could probably have used some kind of help for anxiety then, but I could not afford any more co-pays.
Luckily, my son was learning so much on his own that I didn't have to do much with him academically, except for trying to figure out how to deal with the dysgraphia and once he was typing well it wasn't as much of a problem except for writing out math problems. My son got very good at doing mental math because of his dysgraphia. He developed strengths that I don't have because of this disability. He does most of his math on the computer and only writes what he absolutely has to. A few days ago he was working on improving his speed in answering math word problems and I saw that he could read and answer 7th grade math word problems on IXL faster than I could even read them. If I don't make him write out the problems and leave him alone to do it his way he is very good at math and even fast and accurate. Writing was always the problem and I think he can work around it. I am not so worried about that any more.
His reading and comprehension is at a college level and he can write very well if allowed to type and he has a very nice voice and can act and he is a great kid who at the moment is dealing with a lot of headache and back pain. I think we may be close to having a diagnosis.
