What to do?

I’m at a loss and I don’t know what to do.

For years now my oldest son has had autism and has suffered from seizures. He also has severe cognitive disabilities because of it. He looks like any other child and is verbal, he just doesn’t make a whole lot of sense.

At twelve years old, he has a really hard time putting his thoughts in sentences. He doesn’t communicate very much and when he does it is very awkward. But there are also times when he will express ideas that extend well beyond the maturity of a 12 year old boy. He tries so very hard though, especially around his peers.

About 5 months ago, he started getting worse. Almost to the point that he wasn’t talking at all and he was wandering off all the time. At my insistence, his neurologist admitted him for an overnight EEG (brain wave study) and we found out that despite his seizure medications, he was still having nocturnal seizures almost every15-30 seconds. His neurologist decided at that point that instead of him having a consistent dose throughout the day that she wanted to lump all of his seizure medication into one dose before bed. But something else… she was concerned about “seizure-like” behavior he was having during the day but with no documented seizure. She thought that he might be having seizures deeper in his brain that were not being registered by the EEG.

She referred us to a pediatric seizure specialist at Rainbow Babies Hospital in Cleveland. Apparently there was some research some years ago that showed that children with nocturnal seizures who were given low doses of valium at bedtime had greatly improved EEGs. So under extremely close observation in the hospital, they gave him the valium and lo and behold his EEG improved the first night by 65%. We were discharged with the prescription and things with his seizure related behavior, staring spells, wandering, confusion, etc has substantially subsided but…other things remain.

Even the psychological issues that have come up from issues surrounding his biological mother and through my divorce with his father, I am told are resolved. The people who have worked with him on these issues for the last 2 years, have told me that the issues are no longer psychological and at this point they feel he is better suited for behavioral counseling. I was on the same page.

I have great concerns over his safety. Seizure related behavior aside he still cannot cognitively grasp concepts that are essential to his everyday life. I have little hope left that he will ever have a “normal life” that I so desperately want him to have. There’s been talk at school about sending him to a school for the mentally disabled and more and more I find at home that if I am not with him, he can/will potentially hurt himself or someone else. Whether its the first degree burns hes given himself in the shower or the shock he could have potentially given himself by sticking a magnet in a electric socket or the time he knocked out his little brother’s tooth while acting out something he saw on TV…the incidents and the stakes seem to be increasing and I’m out of steam. I can’t keep up.

With his 13th birthday approaching there won’t be anywhere I can send him for daycare and I most certainly cannot trust him alone. My parents health isn’t great and his paternal grandparents are caring for two dying relatives in their home. Quitting my job to attend to him is becoming more of a reality everyday. With my college graduation arriving in a few short months – its almost ironic. Law school? I don’t even dare to think about it right now.

People have started to talk to me more about residential treatment for him. I just can’t wrap my head around it though. I fully admit that I don’t feel like I can take care of him at this point, but I don’t know how I can just let him go live somewhere where someone else does. I just can’t. I can’t even bring myself to do the research on it.

But not doing it might mean sacrificing any possibility he has at his OWN life. My life … my dreams. As his mother, I can deal with that. I’m willing to do that. But what about my other two children and their life and their goals and their dreams. What about how I always set them aside? Can I keep doing that? Should I…if there is a way that they can all be taken care of and live their own life?

Seems like no matter what I think/do – I find myself feeling guilty and  not having a clue what to do next. It sucks to not be able to ask your child what he’s thinking and to feel like theres nothing you can do to help him.

I’m just at a loss, a complete and utter loss.

2 thoughts on “What to do?

  1. Is there any place that you can send him that has kind of an open house policy with him? Like you can visit any time and take him out to dinner with you guys and stuff? Have you talked to him about it? Maybe he knows he’s really sick. Maybe he knows this might be best for him. He’s a smart kid, Steph. And have you even talked to his father about it? I know he’s a total douche bag but his opinion should be at least heard. He should have to pay for any care as well. The safety and well being of your whole family is what matters…:( I wish this wasn’t on your shoulders.

  2. @blue_sunshine_2006 – 
    I have tried talking to my son to see what he thinnks would help him. Basically, he’s at a point (he’ll be 13 next month) where he is adamant that he doesn’t need any help with anything, even though I know he know he does. Although the talk we had this past week, seems to have helped immensely.
    With his Dad, it’s rather complicated. His opinions and feelings are on a roller coaster setting…I never know what I’m gonna get. I think its hard for both of us to accept that our son has a problem that we can’t fix. But we at least both agree that he is at a point at which we’ve covered everything else so now we need to seek help from somewhere that can give us the direction we need. I talked to his counselor the other day at school and shes put us in touch with an case management agency in or county that will help us get him all the services we need to make him be as independent and successful as he can be. We have an appointment in April. I’ll know more then.

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