Earlier this week we made another run to Baltimore for a scheduled check up with Corrigan’s Metabolic doctor. His numbers were a mess and caused a bit of stress that morning. His ammonia, while not elevated enough to warrant hospitalization, was much higher than we like to hear and we had to make changes to his diet. He is still in the 25th-50th percentile for height but is losing his baby chunk so he looks longer and leaner to me.
We are also looking into enrolling Corrigan in a Stage 3 clinical trial for a new drug to help control his disorder. We were on the fence for awhile but with unexpected encouragement from his team at Hopkins, we are ready to make the leap into helping with research. It is scary but exciting!
The morning after our appointment I noticed the mail in the dining room and one of the letters contained his late-August evaluation from Early Intervention. His total language level is still only 18 months. His cognitive results put him at 21 months of age (he is 40 months old), his social/emotional in the 18 month range with some scatter above and his motor skills, both fine and gross, were rated lower than his chronological age which kind of baffles me. I have no concerns with Corrigan in regard to motor skills.
It is always difficult to get those letters in the mail, to see it printed in black and white. It isn’t like we don’t already know that he is globally delayed but I am aching for those numbers to improve. I pray that one day his chronological age and his developmental age will meet but if they don’t it will not be the end of the world. He is making strides and even though the evaluation was made on August 25, 2011, the results of four weeks of preschool are already obvious. If they tested him now, just one month later, I’d like to think we could at least answer “yes” to a few more questions. It might not move the overall developmental scores quite yet, but it would feel great to add some checks to the columns instead of x’s.
Speaking of learning, it is well established that Corrigan has an affinity for letters and numbers. His fondness for those things have been somewhat to the exclusion of everything else. He is currently infatuated with analog clocks (loves those numbers!), or “school clocks” (coo-cocks) as he calls them, since all of our clocks at home are digital I suppose he thinks that the ones with hands are only for school. His therapists have been working to move his attention away from his comfort zone and help him to explore other areas of learning, such as colors and shapes, but he likes what he likes.
In the doctor’s office, taped to the back of the appointment room door, were pictures of crayons. He was fussing to leave the room while I was still talking to his dietitian so I picked him up to comfort him and was holding him near the door. As I continued to participate in the conversation I casually asked, with no expectation of a proper answer, “What color are those crayons, Corrigan?” and he replied, all correctly, “boo, wewwo, red, gween.”
Huh. Corrigan knows his colors. I had no idea.
I’ve also noticed that he knows all of his lower case letters as well. I never taught him those. I didn’t know that he was ready for lower case. Somehow he learned on his own because letters interest him. I understand that his therapists do not want him to perseverate on letters but I’ve wondered if it were less about obsession and more about feeling successful. What if I keep encouraging him in the areas that he feels the most successful, would that be so bad?
Since he now can recognize both upper and lower case letters the next step seems to be phonics. However his speech is so delayed I can “P p p p p” is the “P” sound all I want, but if he doesn’t repeat it, how do I know he understands? Except the other day he walked up to me and said, “S!” and then “Ssssssss.” Yes, yes that is the sound that an “S” makes! To which he then told me the sound that the letter P makes.
No kidding. Phonics eh? Sounds like progress to me.
So I shot for the moon and ordered him a Sight Words DVD. We love the Preschool Prep series of videos (except the lowercase “a” that they use is not the standard hand printed lowercase “a”) and I grabbed the first DVD in the Sight Word series.
Wise Geek tells us that “”Sight words” is the term for words that readers should recognize instantly. Recognition is important because sight words are so frequently used—making up, by some estimates, 50 to 75 percent of all words that children are likely to encounter. It is also important because many of them do not sound as they are spelled, making them difficult to sound out using knowledge of phonics. Having the sight words within his or her repertoire gives the child a better chance to grapple with more difficult and infrequent words without losing the sense of what is being read.”
Yesterday, after his nap, I popped it in to play and he watched it all of the way through. He even paid close attention to the parts designed for parent education and then last evening, when it was close to bedtime, I put it in once more to try and settle him down for bed.
I handed him the empty DVD box while I put the disc in the player and he casually turned the box over and pointed to the word on the back and said, “PLAY!”
and then he signed the word “play.”
Color us stunned. I’m so glad that Mark was in the room to witness it too because no one would have believed me. He then watched a portion of the DVD a bit and proceeded to announce, before the voice on the DVD spoke the word, both “you” and “to.” This morning I tested him on a plain index card, without the fun graphics of the DVD. He has learned three sight words in one viewing.
Developmentally 21 months old and globally delayed yet learning sight words. Speech is the key to Corrigan’s success. I am convinced that if we can either teach him to talk, or teach him to use technology to speak for him, his entire world is going to expand in ways that we never thought could be possible for Corrigan. He will catch up lighting fast if he could just communicate. There is a lot more trapped up there in his brain than just increased ammonia levels. There is intelligence and the ability to learn and my goodness, I just want to buy every DVD on the planet and enroll him in every special program available and tell him over and over that Mommy believes in him.
You can do it, little man. You keep on being awesome. Mommy has her pom poms ready. She never thought she was cheerleader material but baby, for you she will do cartwheels!