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 news...no 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.

2 comments:

Molli Salzman said...

Karen,

I am happy that you got some answers and I am sad that you are feeling so vulnerable. It is a tough situation our kids are dealt and all we can do is be there for them, no matter how much we want to take all the pain away.
You are a very courageous mom and I trust that you will do only the best for KC.

baby trevor's mommy said...

Oh sweetie! It's the constant tug of war huh?! It's like we just get our feet under us...when *whamp* we're back butt first on the floor. This IS absolutely heavy! I remember Jen told me once...and it stuck...that it doesn't matter how big/little the handicapp if your child fits in there somewhere it hurts. And it's true. I've learned to let the sadness roll. It passes. It always passes. Because our love for these little monkeys is just SO much stronger! And your love for KC is amazingly strong. I see it...and I know. I know that God is in control. He put you & KC & your mom...together. You're a team. Exactly the right team! I look at my life...and see the same! But you know me...I totally have sad heavy days! But they pass. They always pass! I promise! Plus...by the looks of things...you're gonna be too stinkin' busy to stay sad! *smile*

xoxoxo...danielle