A Little Something Extra

Monday, November 26, 2007


Lest any of you think I'm kidding about not getting sleep these days, note the time on this post. Yuck. Tonight it's heartburn and stuffed-up sinuses.

I'm feeling a burden to post about my previous message about being most scared of our little guy having autism. This was in no means meant to offend any of my friends whose children have been diagnosed with autism. I think I'm most scared of that because it's the thing I know least about. I don't think I'm alone in that... does anyone know of a cause or a cure? There's a lot of speculation (vaccinations, growth hormones in meat, etc.), but I don't think anyone knows for sure.

The other thing I've learned is that I've probably offended someone in the past by saying, "He's autistic." I've recently developed a much higher level of sensitivity to describing someone by their diagnosis. For example, you wouldn't say, "That's a cancer kid." We should say, "He has autism," or "He's been diagnosed with autism."

The same thing goes for our little guy. He's not a "Down's baby." He's a baby. And yes, he has Down syndrome, but we will not let that define him.

On a separate note... we head to Milwaukee early this morning for an appointment with a pediatric cardiologist for a fetal echocardiogram. I'm still hoping that the perinatologist was wrong and our little guy's heart will be fine. After that appointment, we will tour the NICU and Labor & Delivery. On Tuesday, I have an appointment with my local perinatologist. I'll keep you posted.


Melanie said...

Autism scares me tremendously! Each time Logan gets his shots I feel incredibly anxious. I just don't know if I could deal with both Down syndrome and autism. I feel like their is enough that Logan will have to deal with and he deserves the best shot at a normal life.
I completely understand your feelings. I guess all we can do is pray and hope for the best...as we do every day.

maria said...

People First language is the conscious effort of putting a person before their diagnosis. Since Hendrik was born into our family, I too have become more aware of the words that I use with regard to individuals with different abilities.

I often rephrase people's comments in an effort to educate with the People First choice of words. For example, just the other day, my grandmother was telling me about "two Down Syndromes" who attend her senior citizens group. (I was glad to hear that there even ARE senior adults with Down syndrome, and that they are active in the community!)
My response was: "So, there are two individuals with Down syndrome who participate in your senior citizens group? That's great to hear!"

Tom said...

I'm still learning all the "rules" of this new community that I've been "thrown" into. Constantly second guessing myself. Can be a bit tiring.

I find myself staring into my son's eyes to see if I can spot any signs of autism. I'm trying to just enjoy him and take it as it comes. Hard to do some days as I am a professional worrier. If only I could get paid for it. :)