Friday, October 31, 2008

A Very Happy Halloween

My little puppy is such a ham...

And Gran sure is happy....

And Mommy has a lot to smile about...


KC's EEG was NORMAL!!!

Happy halloween everyone!

Thursday, October 23, 2008

I will dream new dreams...

My brother once told me that it's never as bad as it seems and it's never as good as it seems. Tonight that is ringing true for me.

It's funny how I had it in my mind how the EI evaluation was going to go. I pictured one of two scenarios. Either they would tell me I was crazy, and he was fine, or they would recommend speech therapy and tell us to watch some of his behaviors closly.

Not quite. My Mom and I came out of the meeting with five new specialists to see, new equipment, tests, and and heavy hearts.

They asked all of the autism questions. They could see the obvious, which is that he is social and makes eye contact, etc. But.. Does he love to stack blocks and line up his toys? Yes. Does he understand dangerous situations such as a hot stove? No. Does he interact with other children? Well, he parallel plays and imitates. So not exactly. Does he initiate and maintain conversation? Um, well, nope.

Occupational Therapy 1xper week. Need to start using social stories. See a developmental pediatrician and a behavior specialist. Sensory issues for sure. Seeks stimulation, lack of body awareness. Lack of sensation. Recommended weighted compression vest. Can't control his meltdowns appropriately.

Speech he was within the normal limits in terms of how many words, but his pronunciation is off so we will get speech therapy 1x per month and need to get a hearing test asap. Not developmentally ready to begin working on the pronunciation problems.

Physical therapy 1xper month. Low muscle tone, weakness and instability in trunk. Immature sitting positions. Ankles turning inward, instable gait. Need to get fitted for DAFOs.

So, we have our orders. All of the above, along with referrals to see the developmental pediatrician, behavior specialist, ENT specialist, allergist, and pediatric dietitian. Let the fun begin.

I sound bitter...I know I do. I want so badly to be brave and strong. Yesterday I was sharing the good autism diagnosis yet...additional therapy that I didn't expect...lots of avenues to try...Yesterday I was brave, but today my heart hurts. Today it's had time to sink in. I was researching proprioceptive dysfunction, which I found out KC has, and one paragraph said "So your kid will probably never be an athlete but he can learn to function." It seems so trivial, but I almost thought he'd get off scott free without having any doors shut to him before he got to decide for himself. I know it could be so much worse. I feel so conflicted, and guilty for mourning these losses when others who I know and admire are bravely weathering larger losses every day with their children. I suppose thinking about how much worse it could be is a bit like playing the "what if" game. I can't live in terms of "what ifs". "What is" is that every Mom dreams of having a healthy baby who doesn't have to struggle each step of the way. That dream was my reality when KC was born, then he got sick and it was gone, then he got better and the dream was reality again, and ever since it's been slowly, piece by piece, being taken away from me. I don't know how to come to terms with it because I don't know what the future will hold for him. "What is" is that yesterday KC's service coordinator asked me to sign a form releasing KC's records to the school district so that in a year when KC turns three he can be placed in a special ed program in preschool. "What is" is that I thought I knew pain and joy before I had KC, and it didn't even scratch the surface.

Mothers live wrapped up in the illusion that we can protect our children. I can no sooner protect my son from this then I could move the sun and the stars, but I can love him. I will remember that having courage often means letting go. I will be brave. I will let go of my illusions and I will dream new dreams. I will love my son to the ends of the earth and back and he will be always be perfect in my eyes. Always.

Monday, October 6, 2008

It only takes two words...

to melt my already soft heart. After another gut wrenching evening of KC crying, I opened the yogurt he requested. I stuck the spoon in and he freaked. I realized he wanted to feed himself. I handed him the spoon, and he started shoveling it in. The sobs subsided. I looked at him and smiled. I didn't expect him to respond at all, but his eyes met mine and he smiled back. With barely more than a whisper I heard him say, Hi Mama. Tears filled my eyes. I got a glimpse of my son at that moment. He's in there, he just needs me to find him.
KC, keep smiling baby. I know it's hard, but when you can smile, I'll be here to smile back. I love every second of it. You are beautiful inside and out.

Sunday, October 5, 2008

I lost the key...

This weekend, that sweet smile was noticeably absent from my son's face. The sound of laughter from a happy two year old was non existent. After several weeks of improvement on the GFCF diet, KC is worse than ever. My heart hurts for him. I don't even know what to do. When he flips his lid and throws food all over, the Mommy in me knows I have to teach him not to. I use time out usually, but at times like this it seems that he can't even control himself, so I feel horrible punishing him. I just can't let him think it's ok to do that. Chocolate pudding all over me, Gran, KC and the carpet is not ok. He asked for the pudding, then freaked when we opened the lid and put the spoon in. He ran off crying and my Mom and I were trying to figure out what the problem was and he ran back and before we knew it he had his hand in the pudding, grabbing out fistfuls and throwing it! A few times after, he asked for pudding and freaked out again when I offered it to him. I realized hours later that last time KC had pudding it was runny so I put it in a cup for him to drink. My only though is that it wasn't the same as last time. We also had throwing incidents with soy mac and cheese, and spaghetti squash also. With equally baffling reasons (to me). At one point he picked up a book and bashed the dog over the head, completely unprovoked. He's never done that. He cried so much this weekend, that my Mom and I were reduced to walking the floors with him, as he sobbed, many times. Some other odd things that happened before have started again also, such as picking at his eyes. He grabs the eyelash and pulls. He takes a pancake (or other food item), eats half of it, and then hides the rest and asks for more. He eats way more than usual. This stuff doesn't seem remarkable for a two year old, but these things all happen at the same time, and not independently. We took him to an open house at the fire station today. He wasn't afraid of the smoke simulator. He wasn't afraid of the fire trucks. But the plastic ducks in the pool freaked him out. KC LOVES DUCKS!!! I just don't get it. He just isn't the same kid. I'm going to call early intervention tomorrow and see what the heck is taking so long for the eval. I'm going to schedule the EEG that I've been putting off. He did have a few seizures today, although I only think that is part of the problem. I'm so scared. Something is wrong with him. He seems to be loosing his mind and I don't know how to help him. I'm his Mom. I'm supposed to know what to do. I'm not supposed to loose the key...