adhd · asd · aspergers · aspie · autism · Parenting · PRTF · residential placement

Update: My Crazy Life With My Beautiful Boy

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Life is beyond crazy. We took D to a respite program for children on the autism spectrum a couple of weeks ago. They saw no behaviors and thought we were whack-o because we insisted he is on the spectrum (he has also been dx by 3 different professionals). They saw no sensory issues, no obsessive issues, none of the other quirks, etc. Though, they also said that he is the highest functioning child they’ve ever worked with, so he would not fit their longer term treatment facility because “they just don’t deal with kids like him, besides he is NOT on the spectrum.” I was disappointed and heartbroken because I truly have come to a point of questioning my sanity and ability to understand my own son and situation.

We brought him home last Thursday and that night he had a major meltdown/tantrum. He went to school Friday and had a great day. He came home and Friday night, he had one of the worst tantrums/raging issues we’ve ever dealt with. We had to take him in to the hospital because there was a serious safety concern at that point. (It was so serious, I almost called the police.) We took him in and they admitted him after about 20 hours in the ER.

Since he has been there, they have done full speech/language evals, full occupational therapy evals, they have seen the obsessions, the quirks, and they have seen some of the behaviors. While I am sorry for them, I could jump up and down, hoot, hollar, and PRAISE THE LORD for the fact that someone is actually seeing these things.

I had mentioned that I would like a full OT eval, but before the doctor could write the orders, the occupational therapist came to him and said, “I’m pretty sure this kid has some serious sensory processing issues. We need to do a full eval, can you write the orders?” Also, the doctor suggested (before I finished getting out of my mouth that I’d like a full language eval ordered at his next IEP next week), “I think we have some serious pragmatic and social language deficits here. I think we should see about getting a full language eval, but also I want him evaluated for auditory processing disorder.” I was once again ready to jump up and down and thank them. They are, also, definitely agreeing that he is somewhere on the spectrum.

The bad thing is, his thyroid is going back and forth between high and average and his hemoglobin A1C (blood glucose 3m average) is very high for a child his age. They believe the abilify is the cause of that and since we are no longer seeing the benefits of that, we have decided that he will change from that to something else. The good thing is, they are changing him slowly and they are doing it there. The bad thing is, that means he will be there longer and I miss my boy. However, hopefully that means that he will also be able to transition to his longer term therapy place rather than coming home for a few days and then going there. Hopefully by doing that, while my heart is breaking, we can get him there, get him the therapy he needs to learn to deal, and get him home sooner. Maybe, if things go well, even in time for school next year.

The girls miss him so much. They wake up at night and ask when we can go get “their D”, they are broken hearted when he doesn’t want to talk to them on the phone or when we can’t go see him (or that we leave them with someone else). I miss him terribly, while it was nice last night while he was tantruming to be able to say, “D, we love you, but it’s time to go.” and walk away without dealing with the tantrum, it is also heartbreaking to not have him home, not have his adorable smiles, his hugs, and frankly…I *gasp* miss the High School Musical dancing and singing. I may have to put the DVD in and sing and dance alone. I miss him so much it truly, physically hurts. I know that right now, it’s the best for everyone, but I still miss him. He’s still my baby boy.

So, as it stands, we are having to drive about 2 hours each way to and from the hospital every day. I took today off and my mom went, but I missed him terribly since we didn’t go. This is closer than the respite place and also closer than the residential place we are looking at. We are driving on Friday to SC to see the place we are considering at the moment. The thought of my baby boy being that far away is pretty scary, but if it is the best place for him, then we take it and pray that we are able to see him as much as possible and that he is able to get the treatment he needs and come home quickly.

Thanks again to all of you for the support you’ve all given our family!!

4 thoughts on “Update: My Crazy Life With My Beautiful Boy

  1. I want to cry reading this. Your story sounds so similar to ours. We have just started abilify, which was like our last resort before I had to take my daughter and move, b/c her aggression/tantrums were just not making a safe environment for my son. She is very HF, technically, although not really with the behavior issues she displays. I can imagine how hard it is to make the choice to go to the hospital. It's one I hope we never have to make ourselves. *hugs*

  2. Oh, Lena, what a challenge. I am so glad that they are seeing it finally in the clinical environment and that help is on the way. Are you starting to relax in to the respite a little? I know when we've been at our breaking point, it sometimes takes a while for that to help (we're so wound up inside!). Praying for a quick and optimum decision/transition for everyone. Love you!

  3. Lena I am sorry that it's been so up and down and that the first clinicians didn't have a clue but am glad that you are receiving some assistance and you had a mediary placement before moving to long term as it appears it will make it a smoother transition. I know it hurts right now and I'm sure there are times where you sit and think "Maybe would could have done this and lived with this etc…", but please take it from someone who did that you ARE doing the right thing. As I've read the other comments and yours I"ve realized that in hindsight we really should have followed the placement route as it's still taking us all time to heal and it's been quite awhile since he's been gone, but he's been gone before getting any help that would be allowing him to lead a healthy life. So trust in the Lord, know that He is ultimately in control of the situation and will be your healer as well as the girls throughout this time.

  4. I’m disabled and once had a secoitn 8 voucher, but because I couldn’t lease up in their time frame they took it. I wrote to different congressmen, the governor, and even the President no one really cares. I’m a registered voter and I’ve paid my dues, but no one cares.

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