Though it’s too early to tell, we are hoping a new app could be a breakthrough in Carson’s speech journey.
Despite the occasional exceptions, there are only a few places Carson will use his voice to talk. He will express himself verbally with limitations with the safe confines of his private speech therapist’s office, at home when forced to in exchange for something (like his iPad or a snack) and with his speech therapist at school. Even inside these safe places, it’s difficult for him to make the sounds because he lacks the motor plan for forming words. This is mostly due to his dual diagnoses of Autism and Apraxia.
In addition, Carson, 10, is a shy kid. Once he lets you in and gets to know you, his personality becomes evident. He’s cognitively aware of everything around him, even if he doesn’t act like it. He often chooses to not participate in situations because he is uninterested. It comes across as aloof. In this way, he’s like a lot of kids.
While it’s tough to except, I’m beginning to wonder if verbal speech will ever happen for our kid. Even if he overcomes his speech impediments through intense and consistent speech therapy (he currently receives services four times a week), I worry his embarrassment over how it comes out may never diminish. He may never talk by his own choice. Selective mutism is possible. We will do everything in our power and will to keep it from happening, but the reality is he must want to verbally socialize.
The parental battle of emotions and wills is always present with us. Many specialists have told us a surefire way to ensure he never speaks is to be too forceful. We have been told, and some research confirms it, withholding something in return for speech is a mistake. For example, some say it’s wrong to not give him a banana if he signs for one. He should have to try and say it before it’s given to him. Other people argue forcing this sort of thing with a spectrum mind will only result in more fears and embarrassment.
As we plod daily through the psychological warzone, the best way for Carson to communicate at this time in social and school settings seems to be through a “text to speech” app on an iPhone.
Since he began school at the age of 3, there has always been some sort of assistive technology available for Carson through his school. The school system has been great and provided apps geared for speech generation. A new iPad loaded with these sorts of apps was provided to him last summer. Success through consistency of use has been varied over the years. He is generally reluctant because it makes him stand out as different from his peers.
There does not appear to be the same level of apprehension with using his mom’s old iPhone. We had been told by other families through our online network to continue trying different voice producing means until something sticks. We were cautioned against being discouraged if something doesn’t work even if it meant wasting a lot of money and time. That’s easier said than done for sure, as both are valuable.
The first thing he ever said to me on his phone revealed his personality. He said, “Hey Big Chunk, I want 50 meatballs for lunch and spaghetti for dinner.” Because this was an independent thought created solely by him (and quite hilarious), I made sure to follow through with his request. We want him to know his words are valuable and mean something.
Of course, there are limitations to this and he still must use it somewhat appropriately. His big brother thinks otherwise.
Like most brothers close in age (only 19 months separate Beckett and Carson), they are the best of friends and worst of enemies. It just depends on the individual moment in time and the kids’ dispositions at the time. By and large, Beckett understands Carson. He knows his disabilities are real and impactful on the entire family, but he has remarked multiple times of late of how “much better Carson is now.” He then seems to enjoy reliving some of the instances in the past when his antics disrupted, or “tortured” as he describes, our family. Nonetheless, Beckett always takes an interest in what Carson is doing, particularly how school is going for him on a daily basis.
While driving to get haircuts the other night, Beckett asked me how Carson’s day had been. He seemed disappointed a bit when I said he had a good day. He seems to relish, at times, having a bit of a leg up on his little brother when it comes to school. As soon as I replied to Beckett, Carson used his phone to say, “I had macaroni and cheese for lunch.” After wondering how gluten- and dairy-free macaroni and cheese can taste good, Beckett wanted to see the app Carson was using. He then downloaded it on his iPad.
What followed was then a ridiculous banter among brothers of their prized body parts and preferred bodily functions. Though immature and inappropriate, the engagement was a delight to see. Let’s hope we keep it going.