Down Syndrome Awareness Month (5-8)

October 5: Friends

Yesterday afternoon, while all the grownups and teens napped, Sofia and her cousin Lilie spent several hours indulging in raucous imaginative play. Tea Parties, babies, clothing, shopping, makeup, hairstyles. They were very detailed in their explanations to each other. Even though Lilie talks way more than Sofia, Sofia was doing a great job making her own wishes and ideas known. It was fun to just stay in bed and listen to them chatter away.

Playing with friends and family is so important for Sofia, as it is for any child. Although she has several school friends whom she adores - the two buddies in SubSeparate with her, her best friend G from the day school, and dear neighbor S, I think that Lilie and Micah are probably her two closest friends. Purely for the amount of time they spend together, they are able to do more and communicate better. 

Sofia does not get invited to birthday parties from the public school classmates, although while she was at the day school she was always included in parties. We are a social family, and get together with other families often, so she has plenty of group-time, but I hope that as she gets older, she will be able to have more one-on-one time with friends and play the way she plays with Lilie.

October 6: The Eyes. 

Sofia is nearsighted, like just about every single person in our family. People with Down syndrome are prone to vision issues (they are also prone to issues with hearing, but Sofia's hearing is terrific; she goes for screenings every other year, and so far all is well with her ears).

When Sofia was toddler, we took her to the ophthalmologist, who was able to determine that she was nearsighted, but did not need glasses yet. Over the years, I would take her back to the doctor because we thought she was cross-eyed.

"She's not cross-eyed," he'd say, and kick me out. (He really needed to retire!).

A couple of years ago, we switched to ophthalmologists at Children's in Waltham. By now, it was clear that she was having difficulty seeing the television. It turns out that the "cross-eyed" look is because she focuses with only one eye at a time. And it's not consistent. Sometimes she focuses with her right eye, sometimes with her left. But both eyes work fine, and her brain has learned to process what she sees very effectively this way. So the only reason to fix her eyes surgically would be for cosmetic purposes. And it's not bothering me, so we'll leave her gorgeous eyes as they are.

Besides, the cross-eyed look is always a great indication that she is getting tired.

The glasses are another story. Right now, her eyeglasses are somewhere in the back yard. Maybe. Or maybe not. Last winter they were "Outside. In Snow." Recently they were broken in half. Often they are flung across the room. Sofia does not particularly care for wearing eyeglasses.

October 7: 31 for 21: “How can you do this to the boys?”

That was probably the most poignant question I heard when we first got our amnio results. Spoken by someone who loves my boys dearly, it was meant as: How could you have a child whom you know will have special needs? How could you take your attention away from them? How could you make them have to put up with a sibling with special needs?

I’m pleased to say that the person who asked this changed their tune - radically. Just a few years after Sofia was born, this person said, “Having her was the BEST thing you could have done for these boys.” And it was.

Dr. Brian Skotko, co-director of the DS program at Children’s Hospital in Boston, has done plenty of research on siblings of people with DS. Among other things, he and his partners interviewed hundreds of siblings.
- 96% had affection towards their sibling with Down syndrome;
- 94% were proud of their brother or sister with Down syndrome; and,
- 88% felt they were better people because of their sibling with Down syndrome.

Yes, Sofia takes a lot of my attention; she also takes a lot of the boys’ attention (and David’s).
But research also shows that siblings of people with special needs also tend to develop more:
- patience
- kindness and supportiveness
- acceptance of differences
- compassion and helpfulness
- empathy for others and insight into coping with challenges
- dependability and loyalty that may come from standing up for their brother or sister.

They frequently go into fields that involve supporting others.

What I see in my boys:

An exceptional amount of patience, both for Sofia and for others. They help Sofia in ways most siblings never have the chance to try. From the moment Sofia began to talk, Micah was her self-appointed speech teacher. He would coach her on pronunciation, encourage her to produce more words. His patience with her is incredible. He is also her biggest cheerleader, and partner in crime.
At the beginning of the school year, Sofia was afraid to climb to the top of the new playground structure at MWJDS. One afternoon, Micah coached her and coacher her, until she made it to the top. She was SO excited! He just kept cheering her on.

Sam, on the other hand, is the Handsome Prince. As a teenager, and with 5 years between them, he has less to do with her on a daily basis, and he often is distracted. But she ADORES him. Sam is Eugene (the prince from “Tangled”) , while poor Micah is “Max the Horse” (granted, a very responsible horse, indeed).

Having the chance to be Sofia’s brother has been terrific for Sam and Micah. I am proud of the kind, caring young men they are becoming. And there’s no way Sofia would have made such huge strides without her brothers’ goading.

October 8: Flexibility (physical)

People with Down syndrome often have hypotonia (low muscle tone; the amount of tension or resistance to stretch in a muscle), and/or ligaments that are too loose (ligament laxity).

Sofia’s muscle tone is fair. She is strong - very strong - but she tires easily. Try kneeling and keeping your body straight for a few minutes. Think about all the muscles you use to stay in that seemingly simple position. For Sofia, that position is WAY more work.

But with the loose ligaments comes some amazing flexibility. As a baby, if she was put into a sitting position but wanted to be flat on her tummy, she would simply put her tummy on the floor, and whip her legs back out flat - not a “normal” way to move! Just this afternoon, she was trying to block my way, so she stood in the hallway, put her arms out to the walls (it’s a narrow corridor) and then put her foot on the wall - about 2” above her head!

Before Sofia, I’d never seen someone watch TV with their feet behind their head.

In ballet, when they stretch the head back, Sofia has no problem touching her toes to her head. When she feels like it, she can slide into a perfect split without even trying.

And, of course, this is one of her favorite positions for tapping in the car: