Having to just accept things the way they are

by Robby
(MS )

When my step-son was born, the cord got wrapped around his neck, and he had a stroke. There was "minor" brain damage to the frontal lobe. If brain damage can be minor. He had seizures for a couple of years, despite the anti-seizure meds. Then they stopped, for a couple of years, then started back for a couple of years, before stopping for good. Fast-forward nine years, his mother and I got married. Shortly after he started puberty a few years later he developed a behaviour problem. He was horrible, very defiant, had no impulse control, very poor decision making capabilities, would do some of the dumbest things, and just did not show good "common-sense". He was already a couple of years behind in school having been held back twice, he was in special-education classes at this point and would be promoted to the next grade if he just showed up for class most of the time. He wasn't being taught anything, and wasn't learning anything either, so we put him in a private school where they actually tried to teach him, but he just wasn't able to learn much, although he did learn more than in the public school.

We took him to see several pediatrics brain specialist, driving several hours away when we had seen all of them in this area. They all told us that they could still see the damaged area of his brain, but there was nothing they could do. We would just have to wait and see what he would be capable of. We also had him in to see several psychiatrist for meds for the behaviour problems. Which he eventually outgrew.
He turned 18 and dropped off our insurance and he tried to hold down several different jobs for several different years, before we finally realized that he just could not keep a job due to his problems. The last time he got fired, I had to go and pick him up, his boss came out and talked to me for a minute, and explained the problem. After being placed in almost every position in the building, he was given the job of loading trucks. All he had to do was match up the boxes to know what to load in the truck, and he could not do that. He would get in a hurry and grab the wrong type of box and they would have to unload half the truck to straighten it out. He would be trained on a job and finally get it right, and then go to break, come back and would have forgotten everything.
We then tried for almost 10 years to get him on disability, but the court would not accept his medical records because they were more than a year old, we could not afford to pay the doctors and the cost of the test and MRI's out of our pocket. The court sent him for some "testing" which basically consisted of a psychiatrist asking him what day it was, what season it was and who the president was. In another test he was asked to stack some preschool blocks, and put the rings on the pole. Passing these test meant he was OK. The second go around his IQ was tested and it was 2 points to high, even though he failed all the other test.
He is now 30 years old, working on with about a 13-16 mentality. He sits at home all day playing video games, and helping me out (I am disabled also because of some severe back problems and some days I can't take care of myself). We have no hope of ever getting him some help, or making his life fulfilling. All we can do is just go day by day. Dealing with things they way they are.

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by: Anonymous

My heart goes out to you. What a difficult life you and your son have had. I wish I had an answer for you or some information or supports that would help. I know that in Canada here we have a whole lot better care (and yet it is by no means perfect either). I cannot imagine having to "pay" for your child to get things as basic as an MRI. It is my greatest hope, in reading about the changes in your country, that this "Obama Care" will be the start of things changing in your health care system so that you have what I feel is a basic human right: easy access to good, affordable or free, health care.
Be kind, gentle and patient with yourself on your journey, you are stronger and more resourceful than you give yourself credit for.

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