Tuesday, January 13, 2009

Ode to Laughter

In an attempt to cheer myself up; I decided to take on a project. Why I thought it would cheer me up to try and figure out how to create a slide-show by myself and then somehow get it onto my blog I do not know. Perhaps I was more focused on the end result than on the inevitable frustrations involved in getting to the end result. Not necessarily a bad thing I guess.

I felt I needed to do something to share the lighter side of things. One of the most important things I have learned in my lifetime (so far) is the power of laughter. As parents in general, and parents of children with special needs in particular I think we have a tendency to take ourselves a little too seriously. Not to say that we shouldn't take parenting, or our children's struggles seriously; but there is always room for laughter. I think one of the best lessons I can teach my children is the importance of finding the fun in every single day, even the "bad days". Laughter is like a band-aid for a bad day.

So here it is... my blog's first slide show. It's entitled "Ode to Laughter", and is just a collection of pictures that have the power to make me smile. enjoy.


Tuesday, January 6, 2009

Trying not to feel down..

...is tough for me sometimes. Today I had a "review" phone call about how Drew is "progressing" with the IEP plan. I have a copy of the plan. I looked at it when I first got it last June. I looked at it today during my phone conversation. I did not look at it at any time in between. I keep and review the visit notes to see how far Drew has come, but I didn't want to focus on lists of things he needed to learn. I wanted to just watch him learn and not be a stressed out nut about every little thing. It seems my laid-back attitude may have been holding my son back. He is so far behind :( I've known he was behind, not just other kids with your average number of chromosomes, but his peers who have that extra as well. I tried not to worry about it. I told myself that every kid develops at a different rate, in different areas. I told myself that Drew has faced major medical problems that other kids don't, so of course he is behind. I just didn't realize how far behind he was in the goals we had set for him. These are goals designed specifically for him. Goals that took into account his medical issues, and his "starting point". He is behind in every area. Gross motor - behind. Fine motor - a little better, but still behind. Adaptive/behavior - behind. Social/Cognitive - behind.

I hung up the phone feeling deflated. I feel like I've let my baby down, like I haven't done enough, pushed him hard enough. I think for me this is the thing I struggle with the most. I am not a go-go-go high energy person. I am naturally laid back, not pushy, not assertive. With my first child I did not have to work so hard, he did just fine. For Drew I have had to learn to be someone I'm not with doctors, nurses, even strangers. I've had to question, confront and advocate for my son. Now it seems I have not done enough. I haven't met the goals I've set for myself either, to be the best mother to Drew that I can be, to be the mother he deserves. I know our kids don't come with an instruction manual, but it seemed so easy with my first child, Tony, (so far) that its especially difficult for me to accept that I'm not a "natural" at parenting Drew as well. I really dislike feeling so negative and may not even publish this, but then, I committed to sharing the whole story so.... maybe I have an obligation to let others know that it's not all roses and rainbows. So, yep, sometimes I get down. Sometimes its thorns and rain.