Monday, April 03, 2006

ASD: Non-Verbal & Hating It

My middle son suffers from more severe symptoms of Autism Spectrum Disorder. I say "suffers" because he truly has times he suffers. He is non-verbal. Everyone asks if he's mute. This makes me laugh because he's the loudest kid I have! He may not use words or ones that others can understand, but he communicates & is hardly MUTE. There are distinguishable sounds like "mama mama" & "dada". Then there are ones probably only we understand that sound like "tickle tickle tickle", "cold" & "up".

In the past 6 months my middle son has experienced some changes. There was me going to work, my parents watching him two days a week, he started half-day kindgarten, we had company staying all through Christmas, his 6yr molars came in, growing pains, new baby, Papa not being here anymore & the list goes on. Anyway, he was making SOME progress I noticed with things like offering the dog a bone & trying to insert it into her mouth. Things where he seemed to be really showing an understanding of what some things do or cause. He's always communicated his way & made himself quite clear most of the time. He'll take your hand & lead you to the cupboard or fridge or whatever he wants. He will actually lay your hand on the item he wants/needs. But then the aggression started.

The frustration level from not being able to talk & just SAY what you want must be fierce. If it was ME, I know my patience would be thin pretty quickly.
I just have no clue what my son must think in his head while trying to get us to understand he's cutting teeth & in pain. Or what he wants to eat. It's just a cruel merry-go-round of choices that we offer up to have him pick or lash out in frustration at our stupidity to not understand his needs. His aggression started with lashing out at us. Biting, pinching or scratching. Then he moved on to hurting himself more recently. We believe his 6 yr molars to be coming in & at the same time, growing pains. He would hit his hip bones, hit his jaw bones & leave bruises that looked like he'd been in a fight. He bites his own arms & knees when you tell him no or get on to him. It was all coming to a head & with the new baby in the house, we really we're sure how to control his aggression or lashing out. I put in numerous calls to our doctor waiting to hear back as she was on spring break, vacation, & at conferences. I was so worried about his self-injury and how to deal with it. I hated him hurting us, but to hurt himself was just beyond pain to watch.

Today a few prayers were answered. Our old peds doctor had left & started her own practice of Behavioral Studies. After finally leaving her messages & playing phone tag, today SHE called. Do you know how SHOCKED I was that the actual DOCTOR called me? Not an assistant, secretary or nurse. She had been gone two weeks and I'm sure had STACKS of messages. She called us first. It was invigorating to find out she CAN see my children & be of help. Let me tell you how wonderful this woman is & how she made my day.

She will now sit in on IEP meetings at the school & be an advocate for us. She CAN help us try some medicine for my son & how wonderful she won't have to see him in the office first! Not at first anyways. How small is the world that she was just at conference on Autism in Baltimore & our NEW peds doctor was there?? They not only know each other but went out to dinner to talk about MY sons & how to help them! She WILL be able to help my oldest son with some of his OCD qualities also. And she is going out of her way to call a certian compounding pharmacy with a pharmacist that has a PhD in chemistry to make up our medicines. She listened to me update her on our whole family for almost 2 hours. Never trying to get off the phone, but talking like old friends.
I have never felt so relieved & happy about my childrens health.

The only side effects the medicine will have if any, is increased appetitie & therefore chance of weight gain. With my middle son, the metabolism rate he has is probably off the charts. I've never SEEN a child cycle through medicine & food SO fast! His body seems to be on a different scale or system than the rest of us. It's amazing, truly.

I feel like I'm on cloud nine to think a "cure" for some of my son's issues could be at hand. I have never see their Autism as something to get rid of or fix. I see it more as something that gives them issues that we need to overcome one at a time. And if some of those issues stick around for the rest of their lives, well they are still healthy & happy. In my book that's just fine. I don't mind the special attention those issues take or the time or energy those issues require from our lives as parents. I am mystified by the people that call me so "brave" or "special" for doing just doing my job as a parent. I helped bring them into this world, and they are MY responsibility. I thank God they don't have REAL issues like Cerebal Palsy or something that requires them to live life in a wheelchair or disabled in more physical ways.

The Bible says we won't be given more than we can bear. I believe this with all my heart. And today I was truly blessed to know this woman who God placed in our lives for the very reason to help our children & us cope with this thing called Autism Spectrum Disorder.

3 comments:

Katrina said...

Julie, you and Matt are awesome parents. I can feel the love you have for the boys in every word you write and say. Whatever other issues they face in their day to day lives, they know how very deeply they are loved and wanted!

Hurray, God! It's so wonderful those times we can actually SEE His hand working hehind the scenes in answer to our prayers. For me, at least, those times make it easier to remember that He's working even when I CAN'T see it.

Hugs and kisses to the boys from Aunt Katrina--and one big hug for you, too!

Paul said...

You're on the money when you say that those doctors are God's providence. We're always praying for you all! Katrina and I don't know exectly what you are going through, but our girl's initial difficulty with speech and social graces was so hard that one of her first words was "Frustrated". We accidently taught her to say it in those tough times, and I think she more connected her inner frustration to the sound of the word than the dictionary meaning. I am sure you are right; your son is having a tough time. It is good to know he has parents who love and care so wonderfully for him. Great understanding you have. :D

Anonymous said...

Julie-
I'm so glad you've found someone who sounds like they truly take the time to help you out. That is such a blessing. And you are brave and incredible because you are handling it with such love.

You never know what you are capable of until you are placed in a situation and have to manage it. I've seen that over and over again in my life.
Hope everything with the new baby is going well.
-Lisa