My National Downs Syndrome Day Experiences

I'm a few days late, but since most of you have never heard of National Downs Syndrome Day I didn't think it mattered. (I guess I'm not really up on it either, it's called World Down Syndrome Day--oops.) The date was March 21, or 3-21, which is a numerical likeness of the scientific name for ds, Trisomy 21. It literally means a triplicate of the 21st chromosome. We normally receive one of each of 23 chromosomes from each parent, giving us 23 pairs, or 46 chromosomes. Someone with a trisomy has an extra chromosome. The most common trisomy is is T-21, or Downs Syndrome. It is the most common because it is the most "survivable". The 21st chromosome is the shortest, containing the least amount of genetic information. Having an extra chromosome inevitably messes up the genetic balance in a system and the more genetic material on that chromosome the greater the damage. Therefore, having a triplicate of any other chromosome results in a much higher incidence of biological disturbances which more often leads to pre-born death in the form of miscarriage or still birth.

I hadn't intended to give a science lesson, but I guess I just did. Perhaps because some of my own children weren't aware of some of these basic facts that have so directly impacted our own family. What I really set out to do was share a few recent stories on the blessings and trials we receive from others as the world relates to Gabe.

First, the trial. Last Saturday we were out playing at the park with our grandson on his birthday. The older boys and Keith were playing on the outdoor basketball court while I watched Gabe, Vince, and Lisa at the playground. A young boy (about 7 or 8) was playing with the kids and asked Lisa if "that boy" (Gabe) was her brother. She told him that he was and the boy nonchalantly claimed, "He goes to my school and I always laugh at him." Lisa was caught off guard and responded with, "What?" The boy, again, very matter-of-factly told her that "all the kids in my class laugh and make fun of him". Lisa was stunned and asked him, "But why would you do that?" His response was, "Because he looks stupid."

I guess I knew this was coming and that Gabe would be the target of teasing at some point. I just didn't quite expect it yet. Lisa was so very sad about it. She couldn't understand why anyone would want to tease or make fun of Gabe. She told me, "I don't get it, Gabe looks just like anyone else." I love how her heart sees.

I'm not upset with the little boy, I don't claim that his parent must have taught him to tease others, I don't think he's part of an evil pact of children out to bully and make life difficult for those who are different than the norm. He's just a typical kid working out the way he sees life in a typical kid fashion. He could have been my kid. Kids have their own ways of figuring out life and coming to conclusions about good/bad, right/wrong, normal/abnormal, acceptable/unacceptable, and even stupid/smart. Some of them do better at it than others. Of course, some of them are influenced by parents or friends, but I'm just not jumping to conclusions about this particular boy.

My response to this situation was to talk to the staff at Gabe's school about the incident. I spoke with his teachers and aides who directed me to the school guidance counselor. I made it clear that I did not want this little boy "punished". Instead, I gave them some ideas on how to help educate students to be more understanding and compassionate towards kids with disabilities--something that, ironically, was next on the school agenda for the guidance counselor. (And, no, I don't believe this was just an ironic coincidence.)

As logical and unfeeling as I tried to be in the whole thing, my heart broke a little bit for my son. Maybe it broke a little more for me and for Lisa because, at this point, Gabe doesn't feel bad about it at all. I just know that at some point he will, and I just hate that for him.

Now, the blessing. Two days ago, on 3-21, I was at another park in town pushing a swing next to a young mom who asked if I was Gabe's mom. When I told her I was she said that her daughter, Ava, was Gabe's reading buddy. I knew that Gabe's class was paired up with first grade reading buddies and that his was a girl named Ava but I didn't know any more. Ava's mom went on to tell a beautiful story.

Ava was actually assigned to 2 students as a reading buddy and she read to both Gabe and her own little brother together. Gabe's class was split into two smaller groups a few months ago and the teacher approached Ava and told her she was going to have to just pick one of the boys for whom to be a reading buddy.

Here is Ava's response as told to me by Ava's mom:

Mrs. V____, I know that I should probably stay with my brother, because he's my brother, and I really don't want to hurt his feelings but I want to stay with Gabe. You see, I have a cousin Luke who has Down syndrome and I know how he needs a little more special attention and patience. So, I know how to be more patient with Gabe than most of the other kids and I really want him to have a reading buddy who will be patient with him.

Ava had her teacher in tears and when the teacher told her mom she had her in tears and I find myself welling up with tears as I pass the story on again.

Little Ava is only 6, but she reminded me that Gabe will not only have ridicule and teasing to look forward to as he grows, but he will have understanding, compassionate, patient people like Ava to soften some of the blows.

God put me in the paths of two very different Gabe experiences to make this National Downs Syndrome Day a very educational, poignant, and memorable one for me.