Failing C

2014-04-28-c-repose@2x

Our son C has what’s sometimes referred to (non-scientifically) as a “scattered neurology” (high intellect, severe behavior / social deficits), the upshot of which is that it’s incredibly hard to find an appropriate educational setting for him.

So hard, in fact, that the DOE told us they don’t have a spot for him, and have recommended some schools that might. The problem is that some of these schools are up to two hours away, or don’t focus on C’s particular type of autism.

Add to that the fact that we’ve already been rejected by some schools who say they cannot support C’s unique neurology, and we’ve been feeling pretty down.

Then, one school appeared like an oasis in the desert, a school that could engage C intellectually while helping with his behaviors, a school that created a program focused specifically on children with the same form of autism, a loving school with dedicated staff.

Since C’s been in a somewhat inappropriate educational setting for almost two years — one that does’t focus on autism, let alone children with a scattered neurology — it felt like we’d finally had a stroke of luck.

Last Friday the bad news came: we have one week to come up with a huge deposit to secure a spot in this amazing school. This is the kind of deposit that would ruin us financially; given all our past medical and therapy bills, we’re already at the breaking point.

Certainly we can seek reimbursement from the the DOE since they don’t have an appropriate spot for C, but that’s risky: we could have our request denied by the DOE and end up owing the entire sum, plus legal fees. In any case, some future arbitration won’t help us come up with the required deposit this week.

And now we’re scrambling: how do we find a school for our son before September? Do we bankrupt ourselves, cash out our paltry 401K? Do we move someplace (where?) with the hope that they have better public services? Do we put our son into a completely inappropriate educational setting for yet another year?

And so we feel the system has failed our son, yet again. Perhaps more to the point, however: we feel we’ve failed our son…yet again.

And this is a truly awful feeling.

Postscript: people sometimes ask how hard it is to live with autism. My answer: in our particular case, it’s not autism that makes life unbearable, it’s the system and support services (insurance, schools, etc.) that do.

19 Comments

  1. So heartbreaking. It just doesn’t seem fair that you have to make these kinds of choices / sacrifices just to get your son in an educational setting that he is entitled to. The failure isn’t on your part it’s on the part of school system that just hasn’t made our children and their challenges a priority. Further they recognize their failure to meet his needs and still do nothing. My heart aches for you and your family.

  2. I’m so sorry to hear this news. It is heartbreaking to me because I see how dearly you love your son and I know you’d chop off your arm if it would help him. for what its worth I have two suggestions: 1) ask about/seek out scholorships (probably a atupid idea, but there it is) or 2) try a crowdsourcing campaign (also probably a lame idea, but at least outside the box a bit). I will keep you and your family in my prayers. If you do set up any type of contribution system you can count on participation from me. best wishes as always. Mat

  3. My heart aches for you. Sending you love and hopes for a large sum of money to come your way to help with C’s education.

  4. I agree with Mat. I know of others who have used crowd sourcing for this type of situation and it has been very successful. It is not a long term solution but it might lessen the urgency of decision making and allow you some breathing room and an opportunity to see how C responds to the “right: environment.

  5. I have no affiliation with Sarah nor did I use her services. Our son is ASD and we were one of the lucky few to get an ASD Nest spot — which in our case is the right setting. What I do know from my research is that Sarah is a wealth of knowledge. She gives free consultations.

    You are in my thoughts.

    http://nyspecialneeds.com/

  6. I am not sure if my post disappeared . . . Just in case. I have NO affiliation with her and we did not choose to go this route — but I did a lot of research and I know Sarah is very good at what she does. The consultation is free . . . So this is not a cheap fix but I will say that during my talk with her she gave me good, sound advice I was able to use.

    You are all in my thoughts.

    http://nyspecialneeds.com/

    • Thanks, M. Jonas. Your comment didn’t disappear, it just took a bit to get posted.

      Yes, we have consulted with, and found, Sarah very helpful!

  7. Heartbreaking. It should not be this hard to find appropriate schooling. So sorry for your guys, you’ve been through so much. Move to Nebraska, great schools here!
    Love your lung buddies!
    The Jarecki’s

  8. I feel your pain, and have had the same exact experience for the last 3 years, and have no savings as a consequence, but regarding reimbursement, no you won’t loose your money, you won’t be denied reimbursement, the DOE said they can’t place him, that is them saying they will pay you to find a solution, they are admitting guilt deliberately, it’s the only way they can help you, so you have to use a lawyer, one who specializes in these issues, this is what we’ve done for our son for the last 3 years and have been reimbursed every year, yes you pay the lawyer (about 5k) but you will get your money back (about 90%), esp as the DOE has said they can’t place him, you also need to have a meeting with the CSE and get C an IEP, the lawyer we used neal rosenberg http://www.nyedlaw.com/ this is his specialization can advise you on all of this
    i feel your pain but there is light at the end of the tunnel, it has taken us about 7 years to come to that realization, but it does come

    • Yes, this is our experience as well, and we have and are doing the things you’d suggested above. There are some great sources of help out there.

  9. PS: you need to also claim ALL your tuition and expenses on your tax return as medical expenses, you’ll get a tax break even for the tuition as it is considered a medical bill, you should find an accountant who specializes in this also

  10. Gwenyth and Charles April 29, 2014 at 6:25 am

    Our son James is also autistic, but not the sort where he avoids eye contact or refuses to be touched. He seems intelligent and, if forced to, can communicate using Oroloquo on his iPad, but the adults around him tend to act on his non-verbal cues or grunts, so he naturally tries the easiest course and often succeeds. Now he is 13 and very good looking and tall. The problem is, though, that what happens next? He is totally non-verbal. If he wants to grab something, he often does, even if it means pushing someone out of the way. We tell him “No!” And he clearly understands, but it doesn’t stop him from doing it again if he thinks he can get away with it. In a particularly terrifying event, we could not find him–he had snuck out the back door and walked across the field, climbed the fence, and entered our neighbour’s house where he had hunted down the neighbour’s iPad and was surfing the Web for Thomas The Tank Engine. We bought him a tracking bracelet, which is locked in place, after that, but it is a horrible reality to have to address. When he is eventually well over six feet tall as an adult, what will happen if he shoves a child or and person out of the way and they are hurt? What if he roars and grunts and gets tasered? Unless something changes, he is going to be a virtual prisoner, under constant guard, for the rest of his life. His school is specialized but it seems to aim to produce group home residents, not independent adults. If he is happy, fine, but he may well want much more out of life. We have to find a way for him to express himself beyond asking for food or to go in the water. He has all the tools to do so but is not motivated to do so. He lives with his mother most of the time and she has her hands full with his sister and her own life and is limited in what she can do, and also naturally very sensitive to perceived criticism. We won’t give up, but it will be a lifetime battle. Two excellent films are out there for those dealing with autistic children and adults: Wretches And Jabberers for one and Best Kept Secret for another. I do hope you realize you are doing everything right, no matter what the outcome. Just try to focus on C’s happiness and safety.

  11. You haven’t failed your son. You live in a nation that no longer values its citizens and the challenges they face on a daily basis just to live. I am terrible when it comes to fund raising but I hope crowd sourcing is a solution. Best wishes.