Today marks two weeks since we drove Maxwell to the intensive behavior group home in South Florida.
My mom and Chris and I made the commute today.
When we arrived.. he was in the shower, big surprise… any opportunity to get in water the boy is there. He came out of the room dressed in clothes, real clothes, pants and a shirt and shoes, and he smelled so clean. We brought him strawberries and blueberries and all of his favorites snacks and treats. We played outside for nearly two hours and watched giant, curly-tailed lizards climb the fence. We swung on the swings over and over and when it was thru we swung some more. We jumped on the trampoline…over and over. He ran to the utility sink like any rough little boy and drank from the spigot.
When I knew we needed to head out, we came inside, cleaned him up and said our goodbyes, I held him so tight and picked my bags up and swung them up on my shoulder, I think he thought he too was leaving with me, that was hard, his little, freckled face. I wonder what he thinks. Why are they leaving without me? Wait! Don’t forget me.
He must be screaming inside, it must be an unbearable pain.
My mom consoled me as we walked to the truck. Then I found his ball in the truck and I threw it over the fence for him to find at a later date. I didn’t want to go back in and do it all over again.
I am struggling with some other stuff right now and it’s hitting me hard. All so much at once.
People keep telling me just breathe, I am running out of air.
climbing the rock wall of life, barefoot, covered in baby oil praying for some chalk as not to slip.
Today has been one week since we drove to Coral Springs and left Maxwell at the intensive behavioral group home. I haven’t really addressed my feelings in writing so I thought I’d do that now. Its taken me this long to compose myself enough to do so.
I ache, deep in my bones, its an ache so great that if I had to put it into words its the only analogy I can arrive at.
Long ago, I gave in to the fact that despite my best abilities and the abilities of numerous therapists and doctors, Maxwell wasn’t getting better. Something big needed to happen. Some giant change needed occurring so that he and his siblings could have a better quality of life.
I have learned a lot in this week. Who cares….Who my true friends are….and the judgmental jerks who think I am a crappy mom or giving up. Yep I have had them, and honestly I don’t have time to worry about what other people think of me. I have made peace with myself, my decisions and what has brought me to this point. I don’t know how long this stay will be, or if its permanent, but as a parent, its the worst decision to have to make. Its also hard to watch your child bang his head all day, bite his hand, strip naked, potty on the floor and have no meaningful form of communication.
I want more for him. He deserves better.
Climbing this rock wall of life..barefoot, covered in baby oil.
Praying for chalk as not to slip.
Imagine being Maxwell, unable to speak…or communicate, unable to tell your family you hurt, unable to sign, unable to point. Your head aches with the constant headbanging you do in frustration. Your hand hurts from biting it nonstop. You develop gut ulcers in your frustration. You are stuck. Stuck inside yourself. No matter how many therapists and tests and doctor offices you go to, no one can seem to help you. You grow stronger every day and your parents feel your aggression and self injury is becoming so dangerous to both yourself and the family. Everyday you pray someone will help you. Fix you.
Now imagine being a parent of Maxwell, fighting until you feel like you have no fight left. Finally after years of fighting, getting the help your son needs, round the clock intensive behavior group home. Imagine taking your 8 year old son to a place 2 and a half hours away and bargaining with God, to make a change, fix him, help him, make him better so that you do not have to be away from this precious child you brought into the world. I am exhausted. I have literally fought for years with insurance companies to help me get my son help. People thought I was nuts. What do you mean you can’t go to dinner with your family?? Take your kid to a store… take them on various autism outings in the area? Why not? Well if you’d met Max, you’d understand. You see, its not as simple as OT 3x a week and Speech 5 days a week …ABA all the time ..and bam, its magic, he is better. My son is not rainman, my son is not an aspie, my son is severely autistic and injures himself all day. This has taken away alot from my other children….2 of the other 3 are also on the spectrum. I hurt, I am very sad. As a parent, what you want is your children to be happy and safe and thriving..none of which he is. When you are faced with a decision, you question is it right? Will he be safe? Who will hug him? Who will kiss his freckles? Who will have the patience I have with him? In every therapist that has ever worked with Max, the majority have never worked with anyone as severe as Max. Their words not mine. By making this difficult decision, I am giving my other children a chance to grow and for Max to get round the clock reinforcement that as his mother, I am unable to provide. I am still his momma, and will always be his momma. My heart is aching bad today. He leaves Saturday.
Climbing the rock wall of life, barefoot with baby oil…
Praying for chalk as not to slip.
Originally from Amy’s youtube page. Chris and Max having a cute moment late at night.
Back in 2009, when the boys were still pretty small. Chris and Max had quite love affair for the vacuum cleaner. As you can see, Max never wanted it to be turned off
Here is a video that Amy did in late 2014. She tells our story as it was happening while I was in Afghanistan. Those days, like these days were very tough times.
Max was about two when the autistic behaviors really started to show. Here is a video from 2009 that shows some of that. If you can, please share this and our other videos to help promote our YouTube channel. Thank you.
Hello all. We have a youtube page. From now on most of the videos about the boys and autism will be over there. Check it out and don’t forget to subscribe.
Have a great day.
As we approach a momentous occasion in our lives, it’s time to take a look back at the year 2009. At the time we were coming to terms with the recent news of Christopher, then 2, being diagnosed with Autism. To help us explain to the world what we were going through and to tell our story, Amy started doing Autism blogs for youtube. This is the very first of 15 she eventually did.