Friday, September 18, 2015


So earlier this week, I posted a link to a petition from a father in New York supporting his son's right to be educated in the school near him with his friends (  His son has Down syndrome, but the school district wants to move him to a school further away for middle school.

It got me thinking about inclusion. I wrote a little in conversations on facebook about this - how APS and the schools where Connor was a student were very, very inclusive, and the "genpop" of the school got to know, and to work with, the students in the FLS Class (which stands for Functional Life Skills).

Last night was back-to-school night, and I headed over to meet with Tucker's and Drew's teachers. Drew has a new student in his class. She speaks only Spanish, having just moved from Mexico. Drew's school, thanks to the many efforts of parents and educators, has a foreign language curriculum, and they are learning Spanish. He told me that when they have Spanish, she has English class, and that his teacher speaks Spanish so she is teaching bilingually this year. All these are wonderful things. Then last night, as I sat in Drew's chair and listened to his teacher speak, it occurred to me that she must be so incredibly lonely at school. If someone asks her to play, she can't understand them. If she wants to ask someone where the library is, they don't understand her. It has to be so hard on her little 8-year old heart. It reminded me of the feeling I had when I was first told that Connor's development would be very stunted, and he would never walk, talk or communicate. I cried for hours, thinking of my lonely little boy who would never have any friends. Then his life unfolded and I discovered how exceptionally wrong I was. He was overwhelmed with friends, and it was amazing.

So today, I asked Drew if he would work with me to learn some additional Spanish so that he can speak to her more, and she to him. We're lucky that his uncle is fluent in Spanish, and hopeful that he will be able to teach Drew (and me) some basic things he can ask her, such as:

"Do you like to play with Legos?"
"Would you sit with me at lunch?"
"What is your favorite color?"
"What is your favorite food?"

I'm thinking yes or no (si or no) or single word, easy questions (favorite color? Rojo. Favorite food? Frijoles. etc). Send me ideas. I don't know what little girls like to talk about, but I'd love for my boy to help open up this world in Arlington to her, and maybe help his classmates do the same.

Oh, and if you are so inclined, sign the petition for Aiden to go to the school where his friends are. I bet he misses them, and they miss him.

Monday, September 14, 2015

Weight Bearing

Yesterday, I was driving on Telegraph Road and saw a mother and son taking a walk. The mother was, as many parents do, videotaping him on his discovery walk. The reason, though, is more likely because he was in a gait trainer. A gait trainer is a piece of durable medical equipment (DMEs oh how I haven't missed you!) that assists the physically disabled to learn to walk more easily.  This kid was clearly so determined. His toes dragged, but he kept pulling them forward, one after the other, pushing his foot ahead and then moving the other one. I almost pulled over or lowered my window to holler support to him.  But by the time I got home, I was so simultaneously happy and sad I could barely speak. Happy for him and his family!  Sad for missing Connor, though his gait training days were far in the past now. Connor used a gait trainer in pre-K 4/5s, with Robin in her classroom.

Some days, I bet we all wish we had a real or metaphorical gait trainer. Something that helped us stay upright and true and took some of the weight-bearing off so that we could focus on getting one foot in front of the other. So we construct them, out of our networks and our families - the structures that bear us up when we are feeling like we can't hold ourselves upright any more.

Tonight, as I read with Drew, Tucker wrote the following "story":

When I grow up I will be an inventor and create something that will bring people from heaven, especially Connor.

Then he added in that after he finished college he would create a potion that he can give the dog so that the dog can live forever.

However, for the record, he is still okay with me dying when he is 85 (and I am 121).  I imagine I will need something more than a metaphorical gait trainer by then...2094...