My first concern was about whether Ethan’s family would be represented. Luckily, they were. In the word of the great book, there can be “Nothing About Us Without Us.”
My second reaction was utter relief that Dr. Capone from Kennedy Krieger was going to be there. Dr. Capone taught me so much when Josh was little. He was the first doctor who I dealt with who really “got it.” Until I met him I didn’t even realize that most doctors (even the pediatric specialists) don’t. The others I had met (and there were a slew) were all very professional, kind, and made it seem like they knew what they were doing. I was a young mother, thrust into an unfamiliar world of alphabets, tests, and medical jargon. I trusted everything they said.
Josh did not have the heart problems that can come with Ds. Still, there were scary weeks of waiting and testing to find that out. He did have strabismus (crossed eyes). Doctors told me about the surgery that would be needed in order to correct them. I was terrified. When I talked to Dr. Capone about it, and my concerns regarding general anesthesia, he assured me that the surgery could wait until he was at least a year old, and stronger. What a relief it was to have someone actually listen, HEAR my fear, and respond.
Later, school tests revealed that Josh had a hearing problem. I didn’t believe it. Josh seemed to respond to sounds just fine. This time Dr. Capone taught me that I was, and had to be, THE expert when it came to Josh’s care. Little did I know at the time that the earphones used to test kids in schools don’t always work for kids with Ds. Their ear canals can collapse under the weight of the heavy earphones. He sent me to have the right tests performed, and guess what! No hearing problem.
Dr. Capone taught me that most “professionals” do not have the experience and training to do what was necessary for Josh. He also made me believe that it was OK for me to question “authority” and ask for expert opinions. For a first time, young, single mother – he was a Godsend! Dr. Capone and the Down Syndrome Clinic at Kennedy Krieger know Ds, what the families go through, and how to advocate for what is needed.
I was more than glad to see his name on the list of participants who would be at the meeting.
Now that the meeting is over, and the press releases have hit the internet, we see a stark difference in how some of the participants think it went. I was grateful to see that NDSC saw the need for increased advocacy. In earlier posts I talked about how advocacy used to be. How we counted on each other and our national group to get things done when we couldn’t, didn’t know how, or just didn't have the strength.
Now is not the time for politics and in-fighting among our leaders. The important thing to remember is that this all started because a family lost their beloved son, brother, grandson, and nephew. A community lost a friend and a vital, important member. We all lost the feeling of security and comfort that we expect from our law officers. Let’s not loose even one voice against the crowd because of special interests or divided loyalties. This time should bring us ALL together.
We need to take a look at what advocacy has become and decide whether changes are needed in order bring back the feeling of togetherness that shared experiences create. As a parent of an adult who happens to have Ds, I’m afraid that the younger generations are missing out on something very special.