Labels, School and Services

Well this summer was busy, fun, crazy and sometimes scary. Reese had gone almost 2 years seizure free and then at the beginning of July had two seizures in the same day. I had made the decision to hold off on medicating him when the seizures had seemed to resolve and his EEG and MRI came back normal. But when he had two in the same day and was fever-free, I followed the Neurologist’s suggestion and he was started on Lamictal. They start all children’s on low doses and increase them VERY SLOWLY, to avoid side-effects. We have not avoided those completely. I have found he is more active, more aggressive and has difficulty settling to nap. The neurologist wants us to wait it out before switching since all the anti-seizure medications have some negative behavioral or cognitive component to them. So we wait.

The visit to the Neurologist started a long search to find a Developmental Pediatrician that would take our insurance and see Reese before next summer. Luckily I have an appointment on 9/21/11 and hopefully will be able to schedule his multidisciplinary evaluation then. I have an IEP meeting at his school on 10/17/11 and unfortunately will not have results back before then. The testing hopefully will give everyone involved in his care the best information going forward with his services.

He is such a creative, intelligent and athletically inclined little guy. I just want him to have success in his school and social settings. I also want him safe and not confined or labelled because of his struggles. I know I am asking a lot.

Rome was not built in a day and neither will I be….

I was driving yesterday afternoon to visit friends and family on the other side of the state. I was running behind the schedule I had set for myself. I called a company to follow-up on a job interview and didn’t get the response that I expected. The errands I had run in the morning did not go as planned and by the time I got the boys in the car they had hit their nap-time wall. I was ready to say forget it to the whole trip, which everyone would have understood.

We got going on our trip and 5 minutes into it they had fallen asleep and I took that chance to give God an ear full. Because really I don’t understand what’s going on right now. In my mind I know that I did not get this far for God to drop me on my rear end but I don’t alway believe it in my heart. So I need people to constantly remind me.

As I was driving and praying and yelling and crying. The words to a song came on:

“If it all just happened overnight, you wouldn’t know how much it means? If it all just happened overnight, you would never learn to believe in what you cannot see” ~ Amy Grant

Then I looked in the rear view mirror and saw my little guys. So I took a picture to remind me of that moment of when my heart was open to the idea that it is a process and just like they can’t learn it all in one day. Neither can I.

Staying somewhat sane with TWO screaming babies…

I have no control. None when it comes to where and when or how much my babies scream. No matter how hard I try to anticipate the cry or catch it with the quivering lip, I can’t control it. One more thing in life that I can’t control. Saying that outloud is what keeps me somewhat sane. I have these little chants that I do when the boy’s are both crying. ” they’re just talking, it has nothing to do with me personally, they will not scream forever and this is not a reflection of my parenting”. If I say that over and over again a couple of things happen. I am distracted trying to concentrate on the words and usually by the time I’ve said it 10-12 times at least one of them has stopped. I’m not sure if all mom’s feel like their children’s crying is a reflection of their ability to parent but I certainly have those thoughts/fears.

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