Saturday, July 2, 2011


Buckle in - this might get lengthy. This sweetest of all sweet boys in the whole world is our Corgan, also known as C-Dawg (to which he actually responds better.)

It does not escape my notice the unfortunate timing of my blogging "hiatus." It fell during many key early moments in Corgan's life, and I therefore feel that my record for him is incomplete, and unfair given the attention I've given to documenting the other boys' happenings. I am going to try to remedy that, and I must tell you that just looking at this picture as I type, I've got a big ol' lump in my throat and tears in my eyes. All I want to do is go wake him up, cuddle him and squeeze him. I just love him so, so much. However, he would never let me do such a thing.

Corgan has always been very different from my other boys. I often describe him as being like The Girl with a Curl:
"There was a little girl who had a little curl
Right in the middle of her forehead;
When she was good, she was very, very good,
And when she was bad she was horrid."

I hesitate to say he's ever "bad," but that little rhyme always has entered my mind where he is concerned. He's just always been very excitable, easy to upset, and always does things that completely baffle us. Minor examples from early in his life were that he could not walk until he was 19 months old. (I was much less concerned with this than strangers and minor acquaintances were, trust me.) He had also started out saying words, and then he just stopped talking. It was all screams, all tantrums, all the time. I've been around kids my entire life, personally and professionally, so I know what is typical and what is extreme. Trust me when I say his behaviors become extreme. Screaming bloody, horrible murder in public - for no discernible reason. Throwing himself down in tempers - for no discernible reason. He's overly aggressive and rough. And he's also often not involved with what we are doing. He kind of moves along in the periphery of our family, or whatever group we may be with. The below picture, which I love, demonstrates this. It wasn't a stolen moment of him smelling flowers. This was all he did, just moved along as the whole family walked, in his own little world, investigated the environment, and often had to be called back into the fold, as he traipsed on his merry way. I can't get more specific, it would take ages, but he has definitely been a challenge. I have, until recently, chalked it up to being difficult, like me, and hoped he would grow out of it.

We were able to get somewhat of an answer because of his constant ear infections. The poor boy couldn't hear very well. Once we had tubes put in, things calmed down considerably for a few months, he started to say one or two words, but then that was it. The extreme behavior started again, and he wouldn't talk - never even calling me "Mama." I finally decided these things were not going to correct themselves over time, so I called ECI: Early Childhood Intervention. After several evaluations and meetings, more evaluations and more meetings (occupational therapists, speech therapists, child psychologist, child development specialist, etc.) he was diagnosed with Sensory Processing Disorder, more specifically, he is a "sensory seeking child." SPD "is the inability to use information received through the senses in order to function smoothly in daily life.... an umbrella term to cover a variety of neurological disorders." A child like this often can't translate cues in his environment to modify his behavior. For example, the child will pull the cat's tail, and get scratched, but he can't connect the two, so he continues, baffled at the cat's response. This is something I am still learning about, having only gotten a few chapters into the recommended book, The Out of Sync Child by Carol Stock Kranowitz. Brief examples from the book followed by Corgan's similar behavior:
  • "Craves fast and spinning movement and may not get dizzy. Moves constantly, fidgets..., is a dare-devil and takes bold risks." Corgan often does not know his own strength. In an effort to be physically stimulated, he will hit us (not to be naughty), throw things, run into things. This all he thinks is absolutely hilarious. He enjoys grabbing Duncan and pushing his head down really hard. He does like to cuddle, but isn't still for it. He just constantly moves and shifts. Also, the story from my last post about him just riding his tricycle off the steps, that's very typical. And I watched him do it - it wasn't an accident - he very purposely did it.
  • "Craves bear hugs and being squeezed and pressed. Seeks heavy work and more vigorous playground activities than others." Once he was officially diagnosed, they gave us a vest that is very tight for him to wear occasionally to give him some of that stimulation throughout the day. It is amazing what an impact this has had. He loves it and often asks to wear it. We've also discovered that when he is having one of his melt-downs, if we just grab him and SQUEEZE HIM so tight in a bear hug and apply firm pressure as we massage his back or arms or legs, he calms down pretty quickly. It is now very common for him to run to us asking for a "SKEEEEEZE!" They have also recommended a weighted blanket which will give him that stimulation at night, to help with mornings, which are very rough 99% of the time. But these blankets are quite pricey, so that will have to wait.
  • "Seeks visually stimulating scenes and screens for lengthy times. Is attracted to shiny, spinning objects and bright flickering light, such as strobe lights or sunlight streaming through blinds." Now all kids love them some TV, so at first this was a weird one for me, especially since Corgan actually doesn't like to watch TV much. He used to like Yo Gabba Gabba, but now he doesn't care. (It'd actually be a big help if I COULD get him to watch some TV.) But then I realized something about the lights. He's fascinated with lights, turning them on and off obsessively. And something that I finally JUST connected to all of this was the way he will get a light-up toy or flashlight, and shine it on a wall or the cat, or most often Duncan's face, and he cracks up so hard he starts to cough - just because of seeing the light's reflection.
  • "Welcomes loud noises and TV volume... May speak in a booming voice." Ewan and Fynn have always been very sensitive to noise, and both were completely terrified of the vacuum and lawn mower. Not Corgan. He's obsessed with the vacuum and the lawn mower. We have to keep him from getting too close. He also likes to see how loud and high-pitched he can get his voice to be, and revels in my not-so-favorable reaction.
  • "May taste or lick inedible objects, like Play Do and toys..." Yes, all kids eat play-do, but Corgan will put absolutely anything and everything in his mouth, still. He'd eat anything if I'd let him, except for the actual food I put in front of him!
There are many more examples, but these are the ones I can best describe. Since he has been receiving therapy from the different therapists listed above, things have really taken a complete turn. There are still many challenges, but he is learning and using words at an exponential rate, we are able to curb more tantrums than we ever could before, and I finally feel not so helpless. Things had gotten so bad that sometimes I had to close my eyes or look at pictures to remember him as a little baby so I could extend my patience just a little bit more.
One of my best friends, Scarlett, was visiting from L.A. Her parents own some land and several horses, and she and her sister have ridden their entire lives in competitions and taught lessons. It was mentioned by one of the therapists how horse-back riding is sometimes used for children like Corgan for speech therapy. As Scarlett took him around on this horse, she told me he really blossomed and was chattering and she could tell a big difference in his demeanor as they walked along. I wish I could afford to enroll him in some sort of program. He sure does look at home on that horse.

Besides all this, he is a very sweet, very smart and fun little boy. He loves to play with his trucks and cars and he loves the exercises they have given us for him. Strangely enough, even though his speech is many months behind schedule, he knows all of his ABCs and some of his numbers. He loves Duncan and will rub his head and say "so soft." His favorite person on this planet is Bryce. He LOVES his Daddy like I've never seen from any other kid I've ever been around. If Daddy is home, I am persona non grata. But that's ok. He loves me deep-down, and nothing makes my heart skip a beat more these days than when Corgan calls out, "Mama!"


Julie{isCocoandCocoa} said...

I'm not a great sewer but I've seen articles on how to make those weighted blankets


I bet we could figure it out!

Sarah Young said...

Kelli, I hereby promise if I win the lottery your little man will have as many horseback riding lessons as his heart desires. You are a good, good momma. Hang in there.