Feeling empowered

When it comes to Sean and his designer genes, I have chosen to pick my battles. I personally don't care what you call other people or situations. I am not bothered if you use the word retarded in any context other than my children. It is what it is. Ok that's not entirely true. I am bothered by it. I just choose not to fight that battle. Part of that is because my perception of retarded is to go backward or to stop moving forward and my child is doing neither of those things. So he may learn things slower than other folks, but he will never go backward or stop moving forward. I am more sensitive to other people who do find it offensive though. If someone asks me not to use the word (if I do say it), then I take great care not to use it.

The battle I have chosen to fight is the people first language & thought process. My son is not "A Downs". He is not "donwsy". He is a child named Sean. He happens to have down syndrome in much the same way "you" have brown or blonde hair. Your genetics decided that for you. So your blonde hair looks just like Sally's blonde hair. And your brown eyes look just like John's brown eyes.

Today we went for Sean's follow up appointment with the GI specialist. I really like Dr. T. Today he had a resident with him learning the ropes. She came in to take a history. The same history that is in the charts. If I wasn't allergic to guinea pigs, I'd be happy to be one for her.

Sean now weighs 12lbs 15.5 oz. That's about 1.5lbs that he's gained in a month. YAY!!! He's 24.5" so he grew 1/2 an inch. Then she started to plot his growth on the growth chart. Me being the nosy mother I am, I hovered over her shoulder. Then I asked where the down syndrome chart was. She asked me why she needed it. Um...... because he has down syndrome. And here is where I get empowered.

Her: Why do we need a ds growth chart?

Me: Um.... if you had read his chart you'd have seen that he has down syndrome.

Her: Really? He doesn't look Downs.

Me: He's not down. He's actually quite happy, but he still has down syndrome.

Her: I'll look for the chart.

Me: Yes. Thank you. I appreciate that.

It's not a loud battle. But it is a constant battle. When Dr. T came in, he explained that our conversation would be split between the 3 of us. He'd be pointing things out to his resident and having a conversation with me as well. That's fine. Dr. T asked her to present the case as she would during rounds. She did and said "here is Sean (pronounced it Seen) Scott. A 6 month old downs boy." And I stopped her and excused myself to Dr. T. I said, "I'm sorry, but it's Sean Scott. A 6 month old boy WITH down syndrome or trisomy 21." Dr. T thanked me and we went on.

I was empowered! Sean couldn't have cared less now, but I'm sure in the future he will. And hopefully by watching & listening to me, he'll feel just as empowered and not be afraid to speak up & let the world know he's Sean. A little boy with Down Syndrome.

In other news...... Sean is off the prevacid and we go back in 2 weeks to see if there are any changes.

I haven't remarked about Sean being 6 months old yet. It's not that I have forgotten or haven't wanted to mark the occasion. I do. We took pictures yesterday to mark the occasion and I've been working on a letter to Sean. I just can't make it through the letter without crying. I am so proud to call him my son.