development delayed-but not impossible

I was going to talk a lot about the developmental testing that Corrigan did while were in Washington D.C. but I’ve decided that I don’t really want to. Not in great specific detail, at least.

Corrigan is delayed.

Corrigan is delayed a lot but that is not a big shock. Watching him being tested was painful and because I’m pretty much the only person on Earth that understands what he is saying, they allowed me to be in the room while he was tested. It was difficult.

Corrigan is not a good tester. Standard tests are not good at identifying his strengths and the results paint a bleaker picture than what is actually true. Corrigan takes awhile to warm up to a new room, a new table and a new person, so when you take him into the windowless location, plop down some pegs and a peg board and introduce yourself to him for the first time, you’re not likely to get good results because Corrigan needs time. Testing never allows for a lot of time.

It went poorly. So poorly that the second day’s testing was cancelled and the folks that do the testing decided to simply observe him playing instead.

New hospital. New playroom. New people. Not enough time to really get a good feel for Corrigan, but it is what it is.

Corrigan knows his alphabet, both upper and lower case. He can tell you what sound those letters make as well. He can count to twenty, both up and back. He can read and say 15 sight words and also can read the spelling of colors, and yes, he recognizes all of his colors in rainbow order. Corrigan, academically, could kick kindergarten butt but guess what? Three-year olds shouldn’t be concerned with sight words and phonics. It is great that Corrigan can identify a bunch of separate things in a picture book but he is absolutely unable to apply it to the life around him.

Corrigan knows what a cup is. He can both speak the word, read you each letter, tell you what sound each letter makes and sign it for you in American Sign Language but when that cup is one of four pictures on a page and you ask him “Corrigan, which one do you drink with?” he stares at you blankly.

He doesn’t call me by a name. I am not Mommy, or mama. He doesn’t identify Daddy by name either. He doesn’t understand the concept of hot or cold, or more importantly, safe or danger. He doesn’t know what feelings are (happy, sad, mad etc.) in a way that he can explain, and doesn’t show any change of expression if he sees another child upset or angry. He doesn’t engage in imaginary play, like pretending to be Buzz Lightyear while playing in his room, but he can tell you Buzz’s catchphrase in a mumbly, garbled way.

His ability to not only understand the world, but interact naturally within in it is nearly non-existent. He needs different kinds of therapies than he is currently getting and, thankfully, his IEP meeting is coming up soon. We need to change his goals and we need to find new ways to achieve them. We need to find ways to help him learn, and navigate, in ways that are totally foreign to him and to be honest, someone needs to teach me how to teach him too. I’m at a loss at how to teach something that normally comes easily for most other humans.

Corrigan is a complex kid for someone that seems so simple. He isn’t just some robot spouting off letters and numbers in an automatron kind of way. He looks into my eyes and I can see his desire to impress me. He wants me to be proud of him and basks happily in my enthusiastic, cheerleader-style encouragement. He doesn’t want to be confused. He doesn’t like not being able to understand what the boy in the grocery store is saying to him. He wants to be normal, whatever that means. And I think he will get there. Given enough time.

Sure, I wish it were now. I wish that I didn’t have to check a thousand “no’s” on the booklets I had to fill out prior to testing, “Does he follow two-step instructions?” No. “Does he know at least four body parts?” No. “Is he able to say his name?” No. “Can he pour a glass of water?” No. “Is he potty trained?” No. “Does he show you where he is hurt when he injures himself?” No.

But is he hilarious? Oh mercy, yes. His laughter is infectious. When Mark, Connor and I are all singing a song that he loves, he will tilt his head backwards a bit, smile so big that I can see every tooth in his head and then fall backwards with glee when we finish. He can light up a room with his cheers of happiness. There is a light in his eyes that burns so brightly it can take my breath away when he looks into mine.

He is musical and has an uncanny rhythm for his age. He doesn’t just bang on the piano, he spreads his little fingers out as if he is about to play a chord and moves his two hands separately, in imitation of a real pianist. He will sit for long periods of time, without touching the keys, on the bench beside a pianist while they play. His little body sways with the sound and sometimes, against his will I think, song will burst from his mouth, though Chopin doesn’t have lyrics.

You can’t teach someone to feel music the way that Corrigan does.

We bought him a toy drum set and set up a playlist, on YouTube, that is full of other youngsters banging away on their kits. The moment I put the videos on the tv, he runs to get his sticks and sits down to bang along. Even when his videos are not on, he will sit at his drums and sing a song, Row Row Row Your Boat perhaps, and using both hands independently, tap out a beat while he sings. He has taught himself, by watching videos, how to tap the bass drum pedal while playing. Not yet in perfect rhythm, but he will get there. If he continues to show interest in the drums, a junior drum kit may be his birthday gift this year. He plays so fast his drumsticks seem invisible in photos…

(strategically placed drum to protect modesty)

Corrigan doesn’t enjoy being read to. Maybe he doesn’t like my attempts to give the characters a “voice?” I know that when I read “There’s a Monster at the End of this Book” to Corrigan, in my very best Grover voice, Connor shakes his head and leaves Corrigan and I behind. I have no idea why, I mean, my Grover voice is spot. on. Okay, fine. It isn’t, but I try. Corrigan isn’t interested but every day, several times a day, he will get out all of his books and sit among them, and on top of them, and “read”. Sometimes I wonder if he can read, he takes his time and when I watch his eyes, they move along as if he is silently following the story.

Often I will tip toe into his room and find him quietly “talking” in his closet, books spread all around him, and watch as he slowly goes through his favorite books, studying each page and sometimes babbling out loud.

He loves rainbows and turtles and his grumpy old dog. He would take ten baths a day if I let him and never cries if the water gets in his eyes. In fact, he laughs if you pour water on his head, another chance for me to witness indescribable joy at the simplest thing. He thinks that crayons are the best invention ever, so long as they do not break and will fill a coloring book with scribbles, not leaving a single page blank. He lights up when he sees his brother and clings to Connor’s hip like a koala. He loves to show me how high he can jump. He is an excellent jumper.

Corrigan isn’t just a number on a test result. He isn’t defined by whatever IQ they decide he sits. He is loving and joyful and fearful and unbelievably brave in the face of his disorder and I love him so much that it causes me physical pain when he struggles with properly lining up those stupid pegs in less than 60 seconds. He is wonderful and I am so very blessed that such a unique, and sometimes confounding, little boy lives in my house.

We have work to do. Brand new instructions with brand new goals and I like a challenge. I think that Corrigan will meet those challenges, given enough time, and if he doesn’t…so be it. He is fearfully and wonderfully made and that is good enough for me.

2 thoughts on “development delayed-but not impossible

  1. Whatever is known about Corrigan, this much is certain: he lives in a different, magical world where one has to be magic to enter and understand.

    Corrigan has the good fortune to have one overriding, exceptional attribute. He has the most wonderful, articulate, outstanding mother in all the world who is full of unending love.


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