I will never again take for granted the luxury of being able to speak easily and verbally what is on my mind. It tears me apart that LJ cannot speak. I tear up sometimes because I know that Noodles is frustrated beyond belief. There is an eminent fear that he will be misunderstood and most of all unheard. He has a definite opinion about what he wants to do, which food he wants to eat, which book to read or which clothes he wants to wear. He is becoming more proficient with his iPad equipped with Proloquo2go but has not shown quick enough progress to ease the worry. If something is too loud he expresses his displeasure by crying. If I leave the room and he is upset, again, he voices his discontent by crying. Noodles understands but he cannot respond. Clearly, my achingly, beautiful child is a smart kiddo. He's a hard worker yet his muscles give up and I love him and I ache for him. And I feel guilty.
Most of the time I can read his signs or movements pretty well. Sometimes, though, he gets mad and can't muster a sound so he bucks backward and arches his back or throws himself forward in his wheelchair. He can do some modified signs, but sometimes his lips move and there's no sound. He watches our lips and tries to form the shape with his mouth only to come up empty-handed. If we could just find a way to tap into his thoughts and desires...I listen with my heart and I am ashamed that I am inept at translating his cues but I still fantasize about how the words will sound.
That's where apraxia comes in. It's entire diagnosis name is "childhood apraxia of speech" or CAS. You can read the full NIH description for apraxia here. But the short version is this: tell tale signs of apraxia are faulty speech motor planning and programming. It is strongly based on neurological deficits or traumatic injury. LJ had major damage to his basal ganglia at birth, not that I know how to read the MRI's, but that's what the neurologist told us. The basal ganglia is most notably the area in which people with Parkinson's disease lose the control of their bodily movements...just one of several neurological conditions that you may have heard about in celebrity news (read Michael J Fox and Mohammed Ali). Unrelated to Parkinsons but no foreigner to medicine, Robert and Lynn Koegel are psychologists at UCSB (shout out to Uncle H!). They are distinguished clinicians and scientists who have done extensive research working with autistic children and are experts in helping children learn to speak. Five seems to be the magic age at which, if children will be able to speak, will have a much higher rate of success in the mainstream.
Practice, practice and more practice. We have two more years before we age out. We are engaged in intensive speech therapy and have been since we began services through our early intervention program when LJ was 4 months old. LJ has 4 hours per week of speech therapy with a PROMPT certified speech and language pathologist. He also has had countless hours of homework practiced in the home, at school, in other therapy sessions, in the grocery store and in everyday life. I have sat on the other side of the two-way mirror while Lewis tries and tries as hard as he can to do what the SLP asks of him to no avail. I have broken down in tears.
So as you can tell, I have been feeling a bit down. But then today LJ's amazing speech therapist, Danielle, wrote me an email that quickly cheered me up."Also....last week...I forgot to tell you. I was PROMPTing a word on him ...I think "up". I did it several times to show him how. He put his hand on my hand and pushed it away while nodding his head no. Then spontaneously said "me". Then he attempted to produce the word by himself. That was pretty cool!"
And that was indeed pretty cool. In other news, the boys started camp on Monday. Each are off to a great start- albeit exhausted by evening's onset. Full days of water play, outdoors, sunshine, fresh air and making new friends. While they're off gallivanting at camp, I've had a little free time on my hands to tackle some extra-curricular classes and feed my soul. What is not to love?
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