Yesterday was the first Tuesday in about six years that Sam had no scheduled speech therapy.
Just last week, I had been thinking how fortunate we were to have finally found a speech therapist who had stuck with us through thick and thin! She really had been such an answer to prayer. In Sam’s school years, he had many wonderful speech therapists, but when he became an adult, that service was dropped like a hot potato. For years, we tried different avenues, mainly because we wanted to give him a mode of communication, whether it was speaking or at least letting us know his needs, whatever that might look like, sign language, pictures, PECS, writing, tablet, etc.
For some reason, many therapies are discontinued after our children with special needs turn 21 years old, as though the need no longer exists. The reality is that for different kids, things click at different times. The belief seems to be that if they have not learned it by high school, they’ll never learn it. In my opinion, that is so limiting and unfair for these individuals. I believe it is important to keep trying and pursuing things to help give them a voice.
For years, we tried to manage without speech therapy or a device. I had even resorted to ordering a PECS communication book, like Sam used when he was younger, because he would continually change the settings in his Proloquo2go. The truth is, there are not a lot of speech therapists for the adult population with autism. We had a woman for a season come to the house to work with Sam, but she was only familiar with little ones, and things didn’t work out.
It wasn’t until Sam was 28 years old that we heard about a woman who might be able to help us, from a rehab hospital, who worked with adults.
When we 1st went to this speech therapist, her specialty was different AAC (augmentative & alternative communication) devices. The problem we had been having with Sam is that on any device, be it phone, computer, iPad, or tablet, he had learned to get into the settings, and he would change the language and dates. We were so excited to be referred to this specialist, as she had many different devices to test Sam on. After our initial consult with her, we left her office with a “loaner” to try Sam on, a device called an “Accent 800”. When children are in elementary school, they start with very basic, simple step devices. Because Sam was older, this device had multiple layers. It seemed very hopeful, as you could set a password and seemingly lock him out of changing things.
One of the beautiful things about this device is that everything has a place. For example, if you type, you know how the QWERTY keyboard is set up. No matter whether you use a typewriter or a computer, the letters are always in the same place, and you don’t have to guess every time you go to type. Some of the speech therapists along the way thought it was beneficial to move the symbols around, thinking it might help Sam recognize them. Individuals like Sam, due to their autism, can forget easily from day to day, and moving the picture defeats helping them – it is just one more thing they have to try to figure out.
Because Sam was older and already had a good handle on different basic pictures, this device had another layer. Honestly, whoever created this was pretty genius in how they set it up. For example, on the front page, there is a picture of an apple. Well, anything related to food – for example, eating, different food, etc., you tap the apple, and it brings you to a page with food categories like breakfast, lunch, supper, etc., and then say if you hit breakfast, it would have pictures of basic breakfast foods.
Six years ago, when Sam 1st started, it all seemed so confusing, but the more we interacted with it, the more we realized how things related to the symbol on the 1st page. If you can’t find a picture, there is a keyboard and “Word Finder” that helps you locate and/or type in the word.
Although Sam rarely uses his Talker spontaneously, there were a few times he needed the bathroom, once driving and once during a meeting, that he took his Talker and told us “I need bathroom!”, to which we responded promptly. We continue to encourage Sam to use his Talker throughout his day. Although it takes prompting and encouragement, he tries to respond if given time. He knows where many things are, and he now knows how to find words. If he doesn’t know a word and you spell it for him, he can find it.
In any case, about a month ago, Sam’s speech therapist informed me that her time with Sam was up; she had tried everything she knew. It hit me hard. I didn’t see it coming; after all, I had just been thanking God for her. One of her phrases to me in the beginning was to remember “this is a marathon, not a sprint”, meaning it wouldn’t be a one-time deal but a long, ongoing journey. I was so thankful she was on this marathon with us. I had to ask what she was saying because I felt like I had been hit in the stomach, and I kept telling myself, “You can’t cry, it’ll upset Sam” (as he’s attached to my emotions). This therapist had been a Godsend in a desperate time, but I understood what she meant. If any of you have been through therapy of any kind, there is a time to gather the tools and strategies, and then there is a time to walk it out. She had taught us all the basics, and now we need to encourage and walk it out daily. In the beginning, we needed the weekly meetings to learn and be accountable.
As I drove home that day, crying, feeling like we were losing a treasured friend, I was also praying, “Lord, what are You saying in all this?”, as I knew it wasn’t a surprise to Him. I clearly heard, “Sometimes things have to be taken off your plate to make room for other things.”
So, here we are! For me, I believe this season has opened up to get my 2nd book done, but who knows, it may be for something else. Only time will tell, right?!
How about you? Has something recently been ‘taken away”? Ask the Lord what He wants to replace it with and listen to that quiet voice within. You might be surprised. Mom…Dad…Caregiver… You’ve Got This!! You are Amazing! Keep doing the hard, it will be worth it!!
You’re Not Alone! Love ya! ❤
SHEILA BOUCHARD 