Boo boos, bruises & hard decisons

tears photo: Tears tears-4.jpg
Being a human chew toy is not my idea of fun. Neither is being a victim to my daughter’s rages – which happen often … more often the I care to admit. But it is a not so fun part of her autism.

It is a very real part of her autism that affects our day to day routine. There is no real rhythm or reason as to why she gets this way. I  know a few triggers are her father, vehicles that look like ones he drives, being told no, having to wait, being over tired,  changes to the routine,  other times it is just because of no real reason at all.

We have a schedule. She works with a BCBA and a BA. She has an out of district placement for her school in a very good program. We have done ABA therapy. We have tried a gluten/ casein free diet – she was in that small percentage  where the diet does not improve her behavior. We have tried cranial sacral therapy- which helped, but got to be too expensive.  It’s not covered by insurance.  We have tried esstinional oils – which did not work &  got to be costly.  Also again not covered by insurance. We have tried pecs, reward boards and other ideas.  We have tried various medicines. I have priced out a DAN doctor, but cannot ever afford in a million years. Again they do not accept insurance. She sees a psychiatrist.  It’s more to monitor the meds then being therapeutic because of her lack of real conversation skills. We also have tried horseback riding and music lessons. I have also tried compression vests , weighed blankets, joint compressions, brushing her limbs, in various other techniques.

We have even gone as far as having her hospitalized for her aggressive and violent behavior. That was when her behavior had become so extreme that she was a  danger to herself and those around her. So within the last 10 years we have tried a bunch of  different options – some have worked others have failed. Another thing about my daughter, is that what works today may not work tomorrow.

Right now I’m at the end of my rope. So I feel like I am at a dead end road. Her case manager  and 2 current therapists have also said that there is nothing else they can do for her. The right now, at this time, when she aggressive and violence all I can do is try to redirect her. When redirecting fails and she is trying to hurt herself or someone else, I have to restrain her. It is not something I’d like to do, but it is something I have to do. She is so incredibly strong for such a young age. She is about the same height as I am now and about 40 pounds lighter then me. I can barely restrain her without her breaking away. She is going to be so much more stronger then I am. I do not think I will be able to restrain her properly within the next year or two.

I have made the decision, the very very very hard decision, to have her placed in residential care. I think it is the best decision for her and everyone around her. This is mainly in regards to her aggressive behavior. We have not been able to really go out and do things. She well receive the 24 hour support that I cannot provide. Also she will still receive all the same therapies as well as ABA therapy. I personally cannot afford to pay for ABA therapy out of pocket it is so expensive. I have a Limited income which pays for a roof over our heads , utilities, food, clothes, and maybe one or two small outings a month.

Putting her in residential placement, does not mean I will abandon or stop being her mother. It just means I will parent her a little bit differently. She will still be able to come out on the weekends or during the week to see family and friends Or to do other activities. It is a decision that will not happen overnight. It will take sometime before this becomes a reality.

So before you judge, everything under the Sun I could possibly do , I have tried. It now become a question of what is safest for her and those around her.

**Check out the movie Fly Away