Friday, February 12, 2010

Late night ramblings...

Another late night... and once again, my brain refuses to settle down long enough to let me sleep, so, here I am, working through the inner workings of my brain, trying to put everything in it's place.

On tonight's plate... Malcolm's appointment tomorrow (or rather this morning.) Though in my heart of hearts, I know it will all work out, and it's for the best, the not knowing what to expect, is killing me! I have NO idea what will happen. Will they just do an intake, or will they start testing right away? What sort of tests will they do? Will they hurt him? Scare him? Or just piss him off?

Of course, I'm praying they find absolutely nothing, and it turns out that we just have a very stubborn 2 year old. But there's a small area in the back of my brain, that part that whispers incessantly, that they'll find something.

We've been dealing with speech and developmental delays now for almost two years. Just around the time of his first birthday, I started noticing an odd shape to his index fingers. Especially on his left hand. They curved inward, the finger on his left hand actually, at times, overlapping his middle finger. And from the second knuckle up, they looked, for all intents and purposes, underdeveloped. He still wasn't pincher grasping, and thus, cheerios, cheez-its, oreo bites, and other basic finger foods were going untouched. While other 1 year old's were beginning to self feed, exploring their world by popping everything not nailed down into their mouths, Malcolm refused to get his hands dirty, let alone put anything unknown into his mouth. He would ONLY eat, what Mommy and Daddy would hand him. And of course, it had to be from our hands to his mouth. If we held a bite of peanut butter sandwich out for him, he'd simply bring his mouth down to our hand. NO WAY was he picking it up. All of his toys, and a few of ours, that had buttons to push, were bypassed. He used his middle finger to push buttons, or this thumbs. But he outright avoided use of his index fingers. At first, it was cute. But soon enough, it grew into a concern. He should be learning to use his own spoon. He should be covering himself in spaghetti and chocolate cake. We should be chasing after him non-stop, crying out, "No, don't put that in your mouth!" He wouldn't even take a teething ring.

We brought our concerns to his pediatrician, and she sent us to an orthopedic. BIG waste of time. He handed our then 1 year old a pencil, pressed down his index knuckle and said, "He doesn't have congenital trigger finger, so... he'll just outgrow this." Fist grabbing had never been the issue. His finger locking in place, never an issue. USING those fingers, that was the issue. And what about the development of them? Not a single test, or x-ray was given to address OUR concerns. We were told, "If you have any more concerns, feel free to come back." Yeah... right. Hide and watch.

So... we returned to the pediatrician. Turns out, the ortho never even sent her the file that we'd even showed up, let alone their 'diagnosis'. She asked US, "Did you guys go?" We were shocked. "YES! We actually called the day after you referred us, and made an appointment for the following week!" Needless to say, she was just as disgruntled as we were. So, she sent us to a plastic surgeon, and into First Steps, to begin occupational and developmental therapy. The surgeon, was WONDERFUL, and his honesty in the matter meant more to me, than he'll ever know. AFTER x-rays were taken, he went over them with us. There was a definite deformity with the little bones in Malcolm's fingers, which was causing the curvature. But because he was so little, the dr. wasn't comfortable doing surgery. "Not until he's at least 6." That's all good and well, but the problem remains. If he doesn't start using these fingers now... he's never going to learn to self feed, use a fork, pick up a pencil. At age 6, this minor little issue will turn into a life long struggle to catch up. If we wait until age 6, to address this, already, he will be behind in school by two years. Add to that now, the time it takes him to recover which equals more time NOT using, and that's what we need to make up, to get him 'up to par' as it were.

First Steps was our last hope, at this point. Developmental therapy started out very good. A lot of play therapy. Learning to use 'appropriate play', which helped develop the basic skills. Occupational therapy was teaching him how to use his hands appropriately, in spite of the curves in his fingers. After about 6 months, we dropped the development therapist. We had this crazy notion, that it would probably work a lot better, if she'd actually show up regularly to our appointments. That was about the time we did a re-evaluation, and together with our Pediatrician, and our Occupational Therapist, we decided that it would serve him best now, if we brought in a speech therapist. At 18 months, he was saying only 3 or 4 words, and only after one of us would say them first. He wasn't communicating verbally at all.

Fast forward to now. At age 2 1/2, he still doesn't speak much, except for the occasional outburst. "Mamamama", "Mooooo", "NO!" What he HAS learned though, is some sign language. And he's learned to use it to communicate his wants and needs. "Oatmeal", "Book", "NightNight/Nap", "Milk", "Mommy", "Daddy", "No", "Good Job!", "Car" (He loves that movie, so Car was an important one to learn) and several other words. His 'vocabulary' has grown by leaps and bounds over the course of the last 4 months, when we decided to introduce sign language into his therapy. His comprehension is off the charts. We can ask him to do multiple tasks, and he does them. All. Without hesitation. He just won't speak.

So, enter the neurologist. Referred to us by his Pediatrician, his appointment is later this morning. At my request, I want to simply start ruling things out. I don't want to treat him for 'stubborn' if there is an underlying cause. At the same time, I want peace of mind that there actually isn't anything wrong. Call me selfish. I can deal with 'stubborn much easier, if I'm not worried about it being something else.

And so, in spite of the fact that I need to be up in four hours, I can't even imagine laying and closing my eyes. Don't get me wrong. I'm exhausted. But, as I said in the beginning... The brain simply refuses to shut off.

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