Saturday, March 30, 2013

One of the Ugly Parts of Autism

Some people experience a very ugly part of Autism that is anxiety and aggression.  Right now we are in a big fight against both. I was hesitant to post about what happened yesterday at our appointment in Baltimore but I feel it is important to other ASD families to share the bad as well as the good. Maybe there are other families out there going through what we are and feel alone, maybe this will let them know that they are not. Maybe there is someone out there that has a younger child and wants to prepare themselves for what may come. In either or neither case, this is my story from our Behavioral Psychology appointment yesterday....

During the appointment I watched a full progression of Cameron's (11) rage and it almost killed me. It started simple, Adam (8) had a toy, Cameron didn't want the toy but he was so afraid that Adam would lose it that he flipped out every time Adam put it down. I was in an observation room and the Dr was handling it which was good only in that I was able to see it and know that he was safe because I trust this Dr completely. Cameron completely flipped out, the Dr had Adam leave and join me in the observation room. 

I then watched for 30 minutes as Cameron went crazy. He wasn't "there" he was lashing out blindly, hitting, kicking, head butting, biting, spitting, he put a hole in the wall. The Dr had to do a standing restraint (basket hold) on hold him for a long time to keep them both safe and as soon as Cam started to get tired he unlocked the door for me to come in as well. I started doing all my Mom tricks to calm him down, over the years I've found a few things that are very effective but only work once the worst of it is over. The doctor said he wanted to call 911 and have Cameron admitted for inpatient treatment and I got mad. I kept saying, what are they going to do? What is it we haven't tried? What are we NOT already doing??? In tears of course because I CANNOT put him in inpatient. I just cannot. 

I focused myself completely on calming Cameron down, a combination of firmness, explicit expectations and understanding and compassion. It worked, the Dr said I did everything right which was good since I've been handling this for 10 years. We were headed out of the office and I told the doctor (in tears again) what am I doing wrong? How is it that BOTH boys don't feel emotionally secure when that has always been my only goal? I have an 11 year old in crisis and lashing out when he doesn't feel secure or in control and I have an 8 year old who is highly effected by his brother's outbursts and has extreme anxiety disorder (which we just found out the extent of from a full neuro psych report). 

The doctor is NOT recommending inpatient right now but wants to have a conversation on Monday and start the process for high intensity outpatient treatment at KKI NeuroBehavioral at least twice a week and as much as 6 hours. My whole body hurts, my head is spinning and I am terrified for him, for us and how all of this will impact both Cameron and Adam's emotional state. I'm in full Mom fix-it mode and I'm so overwhelmed I don't know where to start. Everything we have done to this point, I don't trust because it has gotten us here. I have an overwhelming urge to start over completely.  

I am afraid to talk about it with anyone because it makes Cameron seem like a bad kid when he isn't!!! In the whole picture 90% of the time he is amazing but the 10% is extreme and horrible and scary and we never know when its going to happen. I know getting the meds under control will help a lot and that will come from the outpatient care but I'm fighting to figure out how to give them both stability and emotional security when by all standards we are an extremely stable family. 

I don't have the answers yet, but I will. My kid isn't a bad kid, these behaviors mean something. Although he is considered verbal, there is something going on that he cannot convey. We will find it. 

So I'm looking, researching, paying attention to as many details as I can see. My thinking is changing, my focus has shifted. I was given an amazing opportunity to see the entire progression of this outburst. There is something important about the toy Adam was playing with... Cameron didn't want the toy although that was what I would have thought had I not been paying very close attention. He didn't want the toy, he was afraid of Adam losing it, if Adam lost the toy then Adam would be upset. Cameron thought he could control the situation and keep Adam from losing the toy. 

Control -> Fear -> Anxiety -> Erratic and Extreme Behavior

Another case to be made for understanding the ENTIRE picture. Behind every behavior is a reason, behind that reason if an underlying issue... find the issue, support the child. Most importantly, the behavior is NOT the child, handle the behavior, love the child... always and forever.  And never, ever give up.  

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