New issues will become a way of life,... but it also becomes "normal" to figure out how to help your child cope. Issues frequently pop up at school. For instance, at first, if they tried to have my son leave his classroom to go to Occupational Therapy or Speech Therapy, he would lose all ability to cope as soon as he was outside his classroom. Usually, if I would talk with his teachers or come in to prove to my son that what his teachers were asking him to do is ok, Mom approves and expects it to be done,... he'd be okay with it, too. In the prior example, I went to the school and walked with my son and his aide to every room in the building that he would be going to, to show that this is what he needs to do, and he'll be okay doing this.
As his functionality increased, his goals and expectations at school would be increased. I won't go into each detail of this here (you can email me if you're going through something similar and have questions, that's completely ok). Basically, progress is made up of the tiniest steps with long spans of almost no change, then abrupt explosions of understanding. This is a pattern that keeps repeating.
It was very hard not to be depressed at times, living this out. With each new gain, though, there's new hope. One of the things I did to keep motivated during this time was keep every sheet that had any kind of assessment on it in a 3-ring binder. When I'd get down, I'd start at the beginning, remembering just what life was like when he was first assessed and celebrate how far he's come. Its funny how you forget just how different life was, even 3 months prior.
My daughter was tested at 18 months, and met the criteria for autism, too. It's in different ways than her brother, but she was noticably quirky, too. Due to her age, we decided to wait and go with the ECDD (early childhood developmental delay) label. She would receive all the same interventions and have access to the same specialists, and we could have her tested again later to see if she still met the criteria later on. Both children have made remarkable improvements during the last 3 years. We've been doing "Mommy's Summer School" to keep the children on a schedule over the summer. Both really like going through the centers. We try to keep it fun and creative.
It seems to me that the biggest difference between parents of typical children and of those on the autism spectrum is the issue of rose-colored glasses. With autism, you can't afford them, and have to be aware of just how many variables in your child's life you can't control. You can study every known facet of autism, but that is never going to "fix" your child. You have to put your words and thoughts into action, start the interventions and do everything you can to help them look toward the reality outside, instead of withdrawaling deeper and deeper into themselves. But above all, for myself, the most necessary part was praying to God. He's the only one truly in control of this life and has been since the beginning. There is so much that isn't known about the autism spectrum, with what causes it, what the best treatment will be for each child. One of the most humbling parts is realizing just how much of who your child will become is in His hands, just like it's always been.
"Autismland" is a very dark place to be, especially while you're still new to it. As soon as you start to acclimate to it, the landscape changes on you. Eventually you get used to living in this state of flux, knowing that a much more capable set of hands is molding your children.
This is what normal looks like to us now.
1 year ago