When your child has Autism; it can feel like your whole world is moving in slow motion.
Your child gets “diagnosed” and “assessed” by literally a dozen people, in what feels like a short or sometimes very long period of time. There is the; speech therapist, occupational therapist, cognitive therapist, physical therapist, ABA therapist, neurologist, audiologist, and maybe even a child developmental specialist. Each one takes a look at your child, runs them through a battery of tests, and then puts the child into a category. They tell you these categories and explain how A is supposed to be B or C is doing great but D is lagging. You listen to them categorize your child and explain how your child is not like “normal” children. Then they explain how, through intensive therapy, your child can be close to “normal” once they get started on therapy.
When you tell people your child has started therapy, there are people that will notice immediate changes (which haven’t really happened, but they want you to think they see it), people who will say nothing about the changes you thought were remarkable, people who will point out changes you didn’t notice, or people that don’t care. But what people on the outside don’t realize, is that these “changes” have taken very hard work and dedication by you, any other members of the family, the child, and the therapist. These changes may happen quickly, or happen slowly. Some of the therapies may happen quickly, while others are taking a bit more time. Some of the “changes” may have been free, while others are costing you a fortune. Changes can be easy on you and the family, or they can feel impossible. But they are always there.
Since Little Man is none-verbal, speech therapy feels the slowest, because he still does not make any words, not even baby gabble. He is using the PECs system, but even that is not where it should, could or will be…someday. The problem with using cards to communicate, is that there are so many cards, and only so much space in the binder. Each stage of the system, takes more time, more frustration, more learning (on everyone’s part). It’s been 3 months, and he is just now learning to grab his cards, point at them, and the cards show “I want___.” If he chooses a cracker, then his sentence says “I want cracker.” But that is all he is capable of. At the age of 2, my son cannot say “I love you.” He can not say “I’m hungry” or “I like cats.” He cannot tell me what he is thinking while he plays. He can not tell me what he sees while we’re in the car. He can’t tell me when he’s tired, or that he needs a hug. He can’t tell me he wants me to play catch with the pillows (as there are no cards for “catch” or “pillows”). He can only tell me the simplest of things “I want this toy” or “I want this food.” That is it. That’s all he can say, and he can’t even “say” that. He points to it. It’s frustrating for him, and heart breaking for me.
People take for granted how much communication is worth in your life. Imagine being unable to talk or text someone. You can only pick out 1 card from a list of 40 and try and explain everything; from what you want to eat, to how you have to potty. Can’t do it? Yeah, well, join the group.
Maybe once the insurance gets a clue and the paperwork finally goes through, and he gets put in for more than 1 hour a week of speech therapy…maybe then. Maybe then we will see some differences. But some children with Autism, will never learn how to speak orally. So putting hope into the “maybe,” is heart wrenching. Each day is a snail’s crawl for us. Each day, hoping he will utter something, anything. Each day, hoping he will understand a bit more. Our biggest hope is being put into flash cards, at the moment. He has already learned his alphabet and we are working on other words. My hope is to get him to type everything out on the tablet. But, again, this takes time. SO much time.
He has been working with 2 of his therapists now for 1 hour a week, for the past 3 months. He is just now at the point where if he accidentally touches them, he doesn’t get upset and crawl into my lap. We are just now at the point where he will play with them, without me helping. 3 Months.
Many might think I am ungrateful. That I don’t see how important all of these changes are. That at least he is making progress. Of course I am grateful. Of course I see the changes. I work hard every hour to make sure these changes happen. But it’s exhausting, and so many people can’t appreciate just how exhausting it is. Imagine the last time you wanted something; did it take you 3 months to get it? Probably not. You probably got it overnight-ed by Amazon and had it the next day. Imagine the last thing you ordered, and imagine you have been watching it ship to you, slowly, so frustratingly slowly, for 3 months. And it STILL is not there. You probably would have given up or decided you didn’t need whatever it was. Or you would have gotten up and gone to the store. Well there is no fast pace, no express line for Autism. There is just the child’s pace. And that’s the speed you go. If it takes 3 months, if it takes a year. We are all on his time.
Do I blame him? Not in the least. He is doing his best, and that is all I could ever want. The day he stops caring and wanting to try, that’s what scares me. But I want people to read this and understand where a parent with an Autistic child is coming from. If you see a child yelling in the store and banging their head, and you think “why can’t she stop him from doing that?” Just remember that the little boy has probably been in therapy for months or even years and what you are seeing may be a giant improvement. Parents with Autistic children have an abundance of patience, because we have to. But we go out into a world that is fast-paced, with no forgiveness for slowness. Progress means everything these days. But progress, is different for everyone. My child being able to finally point to an object (which we’ve been working on for almost 2 months now) is a huge step in the right direction, for him.