Abe has been in Speech Therapy for almost three years now. I had no idea how incredibly hard it would be to find therapists that would be a good "fit" for Abram. We've had some great women come in and out of Abe's therapy life and for over a year we had a male speech therapist thinking that perhaps having a male influence would somehow help Abram connect. Unfortunately, that particular therapist felt that Abram had a "cognitive disconnect" and actually DISCOURAGED us from using sign language for Abram to communicate "because he is not Deaf" and told us communication devices would only be used in a school setting. So in essence, it seemed that perhaps he wasn't all that interested in helping Abram learn to communicate in the ways he needed to learn the most. This particular individual even told me that Abram couldn't get the idea that the object he was wanting our son to request could not be requested because he didn't get that the picture (PEC) represented that particular object. Man, he was SO WRONG and I am so glad that Abram told me that he was done with that therapist by constantly signing "all done" and shaking his head "no" before I finally got the hint and discontinued services with him.
After that, we trialled two other speech therapists and although we loved them both (and the one who came before them all who really helped him find his voice and his confidence - hi Kim!) - we chose the woman who Abram had the best connection with and whom was able to get Abram to not only vocalize multiple times the first time we met her but she also had him using a Twin Talk right away. I told her immediately how much I appreciated her and the fact that she clearly understood that Abram has a rare gene mutation that includes impaired/absent speech and that it is IMPORTANT for him to have numerous ways to communicate - not just ONE. For that, I will always be grateful. There are so many people (therapists, friends and family included) that have told me "speech will just come" or that Abram "just needs more time" but the simple fact is - he has a medical condition that makes it incredibly difficult for much of anything to "just happen" as he WORKS HARD for every gain he makes in all of his various therapies. This week, his Speech Therapist introduced him to an iPad using the WeGo App and he was able to tell her that he wanted to play with a ball popper, that he wanted to blow bubbles and that he wanted to eat more graham crackers and drink water. THIS IS HUGE. HUGE!!!!! I was so excited I had to snap a photo. We've spent Abe's lifetime literally being told all the things Abram will not do. I'm so lucky to have found someone who took the time to listen to my concerns and move forward teaching him not only how to make the sounds but to also use sign language AND a communication device. This is exactly who we needed in our life to get our son to start "talking". |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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