Autism has no cure. It’s a neurotypical world. We all know this. There are amazing, talented people who happen to have autism, whether high functioning or not, that manage to cope in a world that is largely tuned out and off to them. It does not appear to be easy. And though my son is quite verbal, much of his speech has always been echolalic. Throughout most of the last three years, he has spoken in repetitive phrases, unintelligible to those who don’t know him, and with what language he did use, quite a lot of it was not necessarily responsive.
I’ve talked in bits and pieces about the journey I’ve taken my son on to get him any and all tools to communicate in a world that does not either cater to, or, necessarily, understand him. From the time I first understood he has a disability to now, his ability to understand and communicate with the neurotypical world has grown. Not just a little bit. A lot. It’s leaving me in constant and renewed amazement – every single day.
I’m not saying there is a magic pill or way to achieve this. I’m not saying it will work for everyone. What I am saying is that it is making a difference in my son. And I want to open my window to you, so you can see it and use it for what it is worth.
The changes were never more evident to me this weekend. Everything we did together, everywhere we went, he was speaking to me in full sentences. Not consistently or continuously. Not necessarily grammatically correct. Not without his quirks still well entrenched in our daily lives. The difference is that the full sentences have weaved their way into the general daily conversation.
And he is talking – a lot. Have you heard the term “Chatty Cathy”? It refers to a doll made by Mattel back in the 60’s and is sometimes used to describe someone who likes to talk. It seems my little boy has turned into a bit of a “Chatty Charlie” of sorts.
Let me give you some examples:
Son: “I want pizza.”
Son: “The cream cheese is white.”
Son: “Mom, can you come in the bedroom?”
Me: “Sure, what do you want?”
Son: “Mom to read you a story on the bed.”
Son: “Mommy, I’m hungry.” “Mommy, I want a burger.”
Son: “Mommy, I want to ride the elevator, one up.” (one time in the up direction)
Unsolicited: “Mommy, I love you.”
At Target: “Mommy, I want…….to go home.”
The last one was a big deal. He has never before told me verbally, he wanted to go home when we were anywhere. When he said it, I knew he was struggling to get the words out but it all happened relatively quickly. And, in the middle of the juice aisle at Target, I wanted to cry, because he conveyed something, seemingly so simple, but, in fact, exceedingly difficult. I did not ask it. He offered this information on his own.
There was a time that I wondered if I would ever hear the word, “Mommy” in any communication directed to me. Now, the word “Mommy” precedes almost everything for which he seeks my attention. A lot of his messages are simple needs and wants as any other child would do. “Mommy, I want a cookie.” “Mommy, will you play Bunny Hop with me?” “Mommy to turn on the light…” “Mommy, I want to watch Cars.”
Maybe most moms with young children find it annoying. I can see how that might be. But every time I hear it, I smile. Every time I hear a sentence, I know my son has climbed another rung of the very long ladder he hauls around to reach independence. With each tiny step, with each sentence, there is a less formidable struggle to communicate, in a world that moves very fast and has very little patience.
I cannot emphasize enough the strange and amazing changes that have come since my son’s EEG revealed sleep seizures in the mid temporal region of his brain. Again, remember, I had no reason to believe that my son was having seizures. He was sleeping through the night. He was not shaking or making any movements that were overt signs of seizure activity. But the EEG showed they were happening.
He started on anti-seizure medication almost six weeks ago. Then, only ten days ago he started on Memantine (Namenda). These drugs together have made a tremendous difference in my son’s ability to convey his thoughts verbally, and to notice and process the world around him.
Again, there is no cure for autism. But when you have a young child who is dependent upon you for care, as an ASD mom, I strongly urge a referral, through any insurance source or otherwise, some way, some how, to a competent pediatric neurologist, trained in autism. Testing will reveal available treatment options (seizures or not) that can help an ASD child reach his or her maximum potential. I cannot put on paper how helpful the neurology path has been for giving my child tools to process the world around him and verbalize his understanding. All I can do is write this post and tell you – I wish the same for everyone.