autism

Atypical

/ stephieopolis / Leave a comment

I am in tears right now seeing a meeting between a mother and her autistic young adult son’s therapist in ‘Atypical’ on Netflix. I have never seen THIS kind of real-MYlife played out from so many angles. The things a mother of a child on the spectrum only wrestles with. The empathetic advocacy Ive seen behind closed doors … portrayed ?

Im not sure how I feel about it yet, but for now I guess it’s just nice to have a representation in any form of media.

Ive told Pickle about it and am curious to hear his feedback.

Change Ahead

/ stephieopolis / Leave a comment

I have not been writing much of my own content lately because I have been preoccupied with things going on here and preparing for a potentially BIG change within our lives.  We have arrived at a point with Pickle in which he is pushing up against a ceiling right now in placement. When this has happened in the past, he has regressed. The last thing I want is to see all the hard work and efforts everyone has put in go away, but the question has now become what is in his best interest and where do we go from here.  I also know that every time we have presented Pickle with an obtainable goal, he has shown us that he is able to do it and I would really like to see what he can do.

On our end, the circumstances that led us to seek Children Service’s involvement are no longer present. Pickle is not the same person he was coming into the situation or even three months ago and neither are his siblings or Jer and I.
I know that what Pickle needs is more real world experience that he is not going to be able to obtain within any paid placement with staff being paid to oversee his every move. I think he needs guidance from his parents and the mentoring available through his peers and siblings to learn to navigate the world as he would like to know it. So, we have decided to try and bring him home and attend the high school for his last nine weeks of his senior year.
This is not something that Jer and I are doing on a whim. We’ve re-evaluated this situation at every turn and right now, we see that he has maxed out what he can do in the system and that home is the best option. We have already agreed to a voluntary six month plan with Children Services because we know it is in Pickle’s best interest to ensure continuity of care and have the proper supports in place.  We are also realistic and know we will still need services for job training and placement, education planning, behavioral counseling and waivers/vouchers for things like summer preoccupation/camp and possibly respite to ensure that nothing/no one becomes stagnant.
I don’t know what will happen. I don’t know how long home will be the best option, but I know right now it is and may continue to be throughout his attendance at college. But I am not envisioning home to be a permanent placement. Only because I am mother who wants for my child what any other mother wants, to see her child reach his fullest potential and him living at home for the rest of his life is not Pickle’s fullest potential. I also think that allowing him to come home will give us the opportunity to see if Pickle may be able to go beyond a group home setting and with supports in place he may be able to achieve what he ultimately wants, which is to reside on his own.
The MR/DD board is concerned that we are setting him, and potentially our family, up for failure. I could not say why they’ve developed this stance and I really don’t want to get too caught up on that statement or those feelings. I just know what I know. And I know that I’m not asking DD to do anything that they wouldn’t normally do for a client. I’m only asking that they begin the process now instead of waiting for him to age out of the system at 21.
Everyone else is on board and has arrived at the same conclusion we have.
Hopefully, after the meeting with all the parties involved tomorrow we will have a better idea of the big picture.
I would ask that you join me in prayer for God’s will in this situation, not my own.

What to do?

/ stephieopolis / 2 Comments

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.