Jackson is non-verbal. He has apraxia of speech which is a motor speech disorder.
When Jackson was younger he had speech… he could say words at 2 that he still cannot say today at 6. I remember watching this fade… I remember a series of ear infections during which Jackson was giving tons of antibiotics. These antibiotics would only cause temporary relief because the fluid in his inner ear that caused the infection remained and the bacteria that thieved on it returned again, and again.
I remember watching my son and his language slip away.
I remember feeling lost and helpless because I knew that Jackson was smart. I knew that he understood the things going on around him. I knew that he had something to say, and it broke my heart that he couldn’t say it.
When we started with doing ABA therapy with SARRC they suggested pushing the speech. Get him to talk. Hold out on giving him things until he tries to talk. Demand speech from him in order to get his wants and needs met.
We tried it for about a year. During that year it was suggested that he might also have apraxia of speech by his speech language pathologist. This meant that Jackson only had a difficult time expressing himself because of his autism, but it also meant that he couldn’t figure out how to speak because of the apraxia.
W.e continued to push for speech until one weekend in the summer of 2018 when Jackson sat on the couch and cried. He cried all weekend. There was nothing wrong with him. He wasn’t hurt. He wasn’t sick. He was sad. He was frustrated. He was communicating in the only way he knew how- emotionally.
I see this time and time again in our community. My child is acting out. My child is sad all the time. My child is having increased behavioral issues.
Behavior is a means of communication.
In the absence of a more functional way to communicate, children will use behaviors to communicate.
This is what my son was doing. He was communicating his frustration. Not with words, but with tears. I heard him. I listened, and I made a change.
I had ordered an AAC (Augmentative and Alternative Communication) device for Jackson six months ahead of time. I held onto it as a just in case measure, and now I knew it was time to use it.
My sons therapists talked to me about teaching him PECS (Picture Exchange Communication) first and I agreed. This way if Jackson’s device ever broke, he would still have a way to communicate with us. I was worried at first. I was unsure of how long it would take him to get through the amount of modules they wanted him to complete before introducing him to the AAC device. But all these worries were unfounded.
Jackson surprised us all.
He got through all the modules they had set up for him in 5 weeks. He once again confirmed what I had always known. Jackson was smart. Jackson understood what you were telling him. Jackson had something to say.
He loved PECS. With it he could ask for the things that he wanted in a clear and concise way. Once PECS was out of the way it was time for the AAC device.
With the AAC device he was able to learn how to form complex sentences and get his wants and needs met. He was able to display just how much information he had been taking in all those years. He was able to show us how his mind works. His recall is absolutely amazing.
Therapist would show him something once. Let’s say how to ask to say “More Blanket Please.” –how many buttons would J need to press to make this…
To our amazement he would remember it. He has a photographic memory. He only needs to be shown a path once, and he has it. As a scientist I have to say that I am amazed at how his mind works and I am always in awe of him.
To those parents out there who have children who are non-verbal, who lash out, or who cry often, please strive to find a way for your children to communicate.
Try sing-language. Try PECS. Try an AAC device. Give them aid. Give them support. Give them a voice.
What they have to say… might surprise you.
So happy to see Jackson thriving with his new devise. I can’t imagine how frustrated we all would get if we had something to say and could not get the words out! As a Mommy your heart must be elated. I would love to talk on the phone with you. I have an event held by Doctor Cameron Call coming up. Do you know him? He is a chiropractor in our area that works with kids on the spectrum. He is giving a “mommy’s night out” for the moms of the children he works with. I would love to invite you. I am meeting with him tomorrow to go over the details. Are you interested?
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