Corrigan’s most obvious area of disability is with speech. He has been in speech therapy since before his 1st birthday and his improvements in this area have been slow-coming. It is never more obvious than when we find ourselves among other kids that are similar in age, but we have run into barely one-year olds that have better speech skills than Corrigan too, and that is always the toughest to swallow.
While the words are difficult for him to find, and his mouth struggles to form them, it isn’t as though we cannot communicate with Corrigan. He does have a decent list of words that he can use if he is having a “good” day (not encumbered by brain “fog”) but he has problems stringing more than one words together spontaneously. In fact, nearly none of his speech is spontaneous. He literally has to take a few seconds to think of the word he wants to use and I often remark I can see his brain working in those moments. He stands completely still and sort of stares off into the distance for a second and then something “clicks” and he finds the word he wants.
And if he cannot, he communicates with tears and scratching out of frustration.
A few evenings ago, we were watching some of our family videos, and we found ourselves watching videos from late-2009 and 2010. It was very eye-opening to realize how far Corrigan’s speech has come in the last few years, though sometimes I feel like we are making little progress at all. While it isn’t easy to communicate in one-word bursts, I am so thankful that he at least has words. Those older videos contained little more than repeated grunts and very little purposeful babbling.
So where is Corrigan, speech-wise, currently? (current age: 4 years 2 months old)
He still uses some sign language, mostly signs for “please” and “help” though he does use others when I watch him playing alone. For some reason, when lost in his imaginative play, I see him using more words and signs than usual.
He can pronounce more than 50-65 words though rarely in multi-word phrases. Remember in Disney’s Tarzan, when Jane was teaching Tarzan to speak English and he repeated everything with a monotone inflection? That is about where we are. Once in awhile he does pop out some interesting phrases, which means that the words are in there, rolling around in his brain but not yet able to easily make it out of his mouth, and it gives me hope that conversation may one day appear.
I want to eat.
I want fries.
I go night-night.
I play Steve Songs. (his favorite cd, he then tells me “8!” which is his favorite track)
I pee pee. ( we are potty-training!)
I go cool car. (he wants to get out of the house and go somewhere)
a drink, please.
One night he freaked Mark and I out when he held up his pointer finger, wagged it at us and then twice said, “one hundred percent, NO!”
What?!?!?! As clear as a bell, he repeated it and meant it. He has never spoken that phrase since. So strange.
He is finally parroting words. Only when prompted though, “Corrigan, can you say______?” but once in awhile he has repeated something he has heard while in the back seat of the car, which means that we need to watch ourselves. It always tickles us to pieces when he spontaneously repeats something he overhears, because his speech is normally so rigid and deliberate in nature.
At last count he can read, and pronounce, around 50 different words, including 15 sight words. He is also starting to spell. In the bath tub he has many foam letters and numbers (shocking, I know) and one day he told me “milk!” while pointing to his letters, and he had spelled it “M7LK”
Last night he spelled out “brown” as “prown” and can easily manipulate his letters to spell, on request, words like “no”- “yes”- “door”- “open”- and can spell red, blue, green, and uses mostly correct letters to spell out yellow, purple and his own name. “CORRGN” (which he pronounces, “cah-gain!”
He gains and loses words and sounds often though, which is both frustrating and confusing. Words that he could clearly speak when he was little, he mushes up now and after his hospitalizations for hyperammonemia in December and January, he no longer can properly sing the ABC song, something he has been able to sing relatively easily since he was 2 1/2 years old. In fact, a lot of the songs he used to be able to sing in a recognizable way, he can no longer sing clearly.
He still loves to count and can do so up to twenty. Both forward and backwards, and while he doesn’t pronounce all of the numbers perfectly, I kind of hope that his pronunciations stick around a little more…
“ten, a lemon, twelve, three-teen, fourteen, five-teen, sixteen…”
He still will not say Mommy. He refuses to call me anything at all these days. He speaks the word DADDY but not really in reference to Mark. I think that he just likes the sound of the hard “D” in his mouth. He does know Connor’s name (“Con-nuh!) and calls the dog by name, so he has a basic knowledge of living things being identified by words, but most likely just a result of repeated use and labeling.
It isn’t that Corrigan doesn’t have words. He does. If I really stopped to think about everything he can say, it is a nice long list but knowing a bunch of words does not translate into conversation and I am still longing for the days that I can put him in the car, after school, and ask him about his day…and then sit back as he replies. A simple back-and-forth would be an enormous event in our family. We have had tiny glimpses in the last year and like I mentioned above, I think that it is all in there, he just needs a way to get it out to the world.
Whether that is through his own vocal cords, or sign language or an augmentative communication device I think he is capable. I am hopeful and I need to take a lot more video, so that two years from now, when we can’t get Corrigan to be quiet, we can look back and recall the days that he spoke like Tarzan, and count our blessings all over again.