October 9: Independance

I’ve always looked at the developmental delays that come with the extra chromosome as sort of a motherhood-bonus: my baby, my last child, my little girl, stays a baby longer. With other kids, the milestones whiz by. With a child with Down syndrome, you get to savor every single milestone, because there is plenty of time in between each of them.

But Sofia is nine and a half years old now. She is no longer a baby.

And she’s starting to let me know it!

I’ve been talking to friends about last Saturday, and what a difficult day it was for me with her. And I’ve come to the realization that it was MY problem. Not hers. My problem that I could not let her go, let her do what SHE wanted to do. I needed to control her, the way I’ve always controlled her.

She is a young lady now. A very opinionated young lady, with likes and dislikes of her very own.

As my friend Michelle over at Big Blueberry Eyes just wrote tonight, I need to back off. I need to give Sofia some space to grow, to be her own person. Not my little shadow.

She lets me know - in no uncertain terms - when I should “Go ‘Way”. When I should “SHH! Be Quiet!”.  And when I should “Leave ‘Lone! Bothering Me!”.

I’m just not always ready to hear her.

Recently the independence has shows in her shopping habits. Previously, she was content to come along with me, look at stuff, maybe touch or grab but not argue too much when I said no. That’s gone. Going to the grocery store is an exercise is preteen attitude and arguing. “Buy This!” - and something is plopped into the shopping cart. “Oooh! We Need This!” and something else lands in the cart. “Yes Mom! I Love It!”.

At the mall on Sunday afternoon, after waiting patiently to get her makeup done by the lady at the Origins store, we followed Sofia as she went shopping. First she had to check out the clothing in Hannah Anderson. Then it was jewelry shopping. Then into Vera Bradley (where they actually gave her a small change purse!). Then William Sonoma. Then Chico's (ok, granted, I was shopping there, but she made David help her try on more jewelry).

She’s ready for the world. She’s ready for BOYS. Fortunately, her biggest crush is on her brother Sam. But she’ll take any opportunity to dance with a handsome guy - the DJ at a B’nei Mitzvah party; the director of her camp on “Prom” day. She knows a good thing when she sees it. She knows what she likes.

I’m soooo not ready! But I’m going to have to try.

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:

Down Syndrome Awareness Month

October is Down Syndrome Awareness Month, and we in the blog-sphere try to do "31 for 21". I've been posting on Facebook, but I'll try to put them here, also. So, to catch up, here are my first four posts:

October 1

October is Down Syndrome Awareness Month. We were SO ready for Sofia to be born with that extra chromosome! Apparently it is possible to be TOO early for Early Intervention - when I showed up 5 months pregnant, they suggested I come back when I actually had a baby! The social workers in the hospital laughed because they had never sent home a child with DS to such a prepared family.
Nowadays, she still makes us all laugh!

October 2

31 for 21: Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome pair 21. This extra piece of material is called a Trisomy, in this case Trisomy 21 (an extra piece on the 21st pair). This genetic disorder, which varies in severity, causes lifelong intellectual disability and developmental delays, and in some people it causes health problems. Down syndrome is the most common genetic chromosomal disorder and cause of learning disabilities in children. It was named for Dr. John Langdon Down, the Cornish physician who first described the condition.
Since October is Down Syndrome Awareness Month, and since October has 31 days, and since Down syndrome is also called Trisomy 21, I will be attempting to do 31 posts, one per day, in honor of Down syndrome. 31 for 21. Get it?

October 3

31 for 21: We first knew Sofia might have an extra chromosome when my early blood-work came back with indications. Ultrasound also suggested some factors for DS - specifically a shorter-then-average femur and an echogenic focus, a small bright spot seen in the baby’s heart on an ultrasound exam, which may mean small deposits of minerals or calcium. My brother-in-law, a peri-natologist, saw the same factors on ultrasound, but said that the baby was in perfect position for an amnio. So we went ahead with the amnio, just to be positive. Babies with Down syndrome are at higher risk for being born with heart defects or other health issues, and I wanted to make sure we had the correct care lined up for her.

So we shifted our care into Boston, and had three fetal echocardiograms before she was born. It was clear she had some minor heart issues.
But fortunately, her cardiac issues have indeed been minor. She had an echo just a few hours after she was born, and then we followed up with many others, but she has never needed treatment for her heart. This past summer's checkup was excellent. The doctor wants to do one more echo, in a few years (she's not the most cooperative right now when it comes to the EKG, and the last time she had an echo, she had to be sedated). But we think most of her heart holes have closed up nicely. We are so lucky!

October 4

31 for 21: If you saw me today at shul, you might have noticed that I was more frazzled than usual. Sofia was having "A Day". That extra chromosome often comes with what is sometimes called "Stubbornness" and sometimes called "Determination". She was extra-determined today, to go inside the school wing rather than into the service in the tent (we ahve a giant tent which seats 400 for services, while the sanctuary and social hall seat 900). She was extra-determined to go to the pre-school wing rather than the religious school wing. She was extra-determined to do whatever the hell she felt like in Rav Shira's service (for grades K-1) rather than whatever Rav Shira had planned (although she totally surprised me by quickly calling out the answer when Rav Shira asked "What does 'Sh'ma' mean" - "HEAR!")

That extra stubbornness/determination certainly gets Sofia a long way in life, but sometimes it is just plain exhausting to go up against. Especially on a day when I am fasting (for Yom Kippur) and have not had any coffee.
I took a little break (thank you, Laura Rothkopf for watching her) and took a walk around the parking lot with another Special Needs mom, who has a grown daughter with cognitive issues. It was nice to be with someone who could totally relate to how I felt, and who had some good words about those loosing battles we sometime face with our kids. "Let It Go" - sometimes I need to be reminded of that.
Later, David asked me if Sofia had been bothering other people. I was really not at all aware of how other people were seeing her. I just know she was bothering ME. And not behaving the way I wanted her to behave. And not allowing ME to do what I wanted to do (I never even made it in to adult services this morning). So was it only MY problem? And does it matter?

October already!

Really, I have not posted since July?!!!

Ok, quick summer update:

- Sofia had a blast during her 5 weeks at Camp Arrowhead, the special needs daycamp in Natick. Every camper gets a one-on-one volunteer. Each week there was a different theme party day. Third week was "Prom". Sofia went gaga over the handsome director in his tux. After that, her volunteers were always male ;)


- Micah had The Best Month Of His Life at Camp Ramah. He was so sad to come home! Especially since Sam stayed for the full summer. Next year they will both be there full summer (and I'll just bring the hair clippers with me on Visiting Day, instead of waiting forever at the only hair place in Palmer that is open on Sundays). But we kept him busy: the week after camp, David took him to NYC for a few days. The following week he spent most of the time doing homework (a research project he needed to do in order to

officially skip a grade). Then we had a week's visit from his friend E from Florida (E's mom is one of my oldest friends; we met at our very first USY event). Then we spent a week on the Cape, and took along another best buddy (also named E).

- Sam came home for a grand total of three days. He spent nearly all of that time in his room, cramming two summer reading books, which he could only access through his assistive technology program. Then David took the two boys to a Yankees game in NY with Grandpa Orson, and then Sam went back to camp for another Shabbat, this time for USY Encampment.

And then we were back to school! 10th grade, 8th grade, and 3rd grade!

DS Convention, and Inspiration Porn

Sofia and I attended the National Down Syndrome Congress convention this past weekend, in Indianapolis. It was a nice to get away with my beautiful daughter (even though she was in a crabby mood some of the time). It was nice to see on-line friends in person. It was nice to see other 9 year old girls with Down syndrome exhibit many of the exact same behaviors as Miss Sofia. It was nice to learn some tricks and tips about managing challenging behaviors or how to teach her about puberty.

There were a few less-nice things, though.

1. Sofia is just not all that social. This one took me a bit by surprise.  But only a bit. On Friday, we went to lunch with friends. We had seen Amy and her daughter Emma this past summer, and I had been talking to Sofia about how excited we were. Emma was also excited to see Sofia. And we have not seen Michelle and her daughter Kayla since the Boston convention 5 years ago.

Sofia was not "into" seeing friends. We got together for a photo:

And you can see that Sofia was not going to cooperate.

She fared a little better with Kayla's brother, Lucas (who is really cute and difficult to ignore):

So we walked to lunch, on a hot day, on the wide, flat sidewalks of Indianapolis (it sort of reminded me of Washington DC). Sofia kept stopping, and eventually I had to carry her (making a mental note to ALWAYS bring the wheelchair!). She and Lucas did stop to pick dandelions (he was very sweet, handing her flowers).

We made it to our restaurant, which was very crowded, so we decided to order take-out and have a picnic (there was a nice park with tables out back). While we were waiting for the food, Sofia cooled off on the floor while Emma and Kayla chatted:

But it was nice to eat lunch with friends (and at least she did stay at the kids' table for a while):

The kids ran around while the adults finished up, and then we got a group photo:

Left-to-Right: Kayla, Emma, Amy P, Michelle, Lucas, me, Peggy, Cason, and Miss Grumpy-Pants

So much for that. She did perk up a bit after lunch, and we stopped into the Exhibit Hall to play a spot of tennis:

Mostly, however, she just wanted to check out the race cars. This being Indianapolis, there were several cool cars sitting around:

She did ok at Kids Camp, although she discarded her eyeglasses (fortunately, they had them at the check-in table), and she was hiding behind a curtain, watching traffic on the street when I came to get her.

The hotel was all-glass, and our room was on the 31st floor, with stunning views:

 What Sofia really preferred to do, of course, was stay in the room, watch TV and play with her hair/makeup toys.

Friday night she and I walked (ok, I wheeled, she rode) to dinner. David had suggested a restaurant but it was really expensive (he had been there, but for work, so he hadn't paid). Sofia and I settled for The Old Spaghetti Factory, which we'd gone to in Vancouver. Very simple, with gluten-free options, and yummy drink for mommy, and $30 including tip.

We came back, changed, and tried to go to the Dance. We got to the convention floor, walked in the door of the dance. Walked directly through the crowd to the other side of the room. Briefly got to see Amy and Emma. And then went to bed. (Ok, got Mommy a drink first). Sigh.

Of course, she woke up at 6:30 am every single morning. Despite the black-out curtains. First stop was the pool, which she had all to herself on Saturday. Then we got dressed and left the hotel to go for a walk.

Outside the first stop, we met up with another mom who was walking with her 12 year old son and a friend's 9 year old son. The 9 year old was tired and Sofia was peppy, so we gave him a ride. But when it came picture time, Sofia again would not join in:

And so we eventually said goodbye (and retrieved our wheelchair).
Sofia likes to be alone:

We walked to the Zoo, which would have been better if it wasn't 98% humidity. We did not stay too long. Walked back, and Mommy had a melt-down finding lunch, until we finally went back to the room and I called in a take-out order from the lobby restaurant.

2. Inspiration Porn and Militant Inclusion: While I was waiting for Sofia to finish lunch, I watched this excellent TedTalk by Stella Young. In it, she talks about Inspiration Porn. Porn is when you objectify another person so that you can feel good. She discusses the phrase "The only disability is a bad attitude" and points out that no amount of positive thinking is going to turn that staircase into a ramp or make closed caption magically appear on the TV.

So after Sofia finished lunch, I checked her into the Kids Camp again and I went to the General Session. First there was a militant Inclusion lady. (I'm not Militant Inclusion, especially when it comes to education. Sofia did really poorly in an Inclusion Class with 20 kids, a dozen of whom had their own learning differences. She does great in the Sub-Separate classroom; she still is attached to the Inclusion class for Art, Music, Gym and lunch, but gets her learning in small group or one-on-one, which works perfectly for her.)

So I was already kind of uncomfortable. Then, after the Inclusion lady, they showed an "Inspiring" video about a fellow with DS who is some sort of assistant coach for a football team. And, honest to gosh, someone in the video actually said, "The only disability is a bad attitude"!

As I was leaving, the football player who came on-stage to introduce the speaker started quoting John (from the New Testament), so I knew I was done. (And I did not feel particularly Included!).

3. Puberty is Gonna Happen: Ok, this session (how to explain and manage puberty to girls with DS) was worth the trip. I sat with Michelle and we took lots of notes about this terrifying topic. It figures, our kids are delayed in EVERYTHING... except Puberty.

When the session ended, I picked up Sofia (who had a better time in Camp this time), and we went up to the Concierge Lounge on our floor for hummus and chips and some wine for mama. We went back to the room to relax before dinner. And then we went down to the banquet.

4. You can't get a kosher meal in Indiana. When I signed up for the Conference, I had to pay a Conference Fee, fees for each session of Kids Camp, a fee for the Compendium (which I got in electronic form), and fees for each meal at the Saturday Evening Awards Banquet. When signing up for the banquet, there were many options: Adult, Child, Vegetarian, Gluten Free, Kosher. Yes, Kosher, for Adult and for Child. So I signed up.

We got into the banquet about 7:10, and it was already full. We waited with a nice family from Long Island and a mother and two kids from New Mexico until they could open another table for us (there were several Reserved tables that were still empty). We put our meal tickets on the table. We told the wait staff what our meal orders were (the LI family had ordered some vegetarian meals). And we waited.

I must have told the waitress 7 times "KOSHER meals". At 8:00, she took the tickets off the table and brought them into the kitchen, then came back and said "They are going to make those now." At 7:15, the manager came over and said "we've run out of kosher meals. The chef wants to know if he can make you a kosher-style meal." NO.

So we ended up with vegetarian, and since I didn't trust that they had also made Sofia's gluten free, I got the kids' meal of pasta (I could not tell if it was GF or not) and she got the adult meal of veggies and beans. But it was already 8:30 and she was ready for bed.

So we left, before the dance even began. Sigh.

But I am glad I went. Glad to meet new friends and see old friends. And glad to be home :)

To Break, To Train, or To Guide

I started this reflection a few weeks ago, and finally have some time to get back to it...

My daughter is strong willed. Very strong willed. She has Down syndrome, and people with that extra 21st chromosome are often known for their stubbornness. But Sofia takes it to new heights. A family history of OCD (my side), inflexibility (dad’s side) and all-out strong personality (both sides) have given her extra strength.

She also has a habit of totally ignoring people. Unfortunately, this often extends to her father or my mother or my sister. When these supposed-to-be authority figures tell her to do (or not do) something, she is more likely to completely ignore them than to obey.

I’m mom. I’m with her more than anyone else, and I know how to get her to do things. I know how to be patient, because she’s not going to just jump up and comply. She has to go through her own rituals in order to get out of the bathtub, or turn off the TV, or clean up her toys. She has her own unique, individual style. And I know when to pick my battles, when to turn on the stern voice, when to cajole, when to let her know I’m getting angry, when to let her know it’s a safety issue.

As you may imagine, this causes some tension in the family.

My mother tells me “You have to BREAK her of this!” as if Sofia is a horse. “You have to let her know who’s in charge.” While I may joke that Sofia knows that she is in charge, I really do not think this is a valid argument.

In fact, whenever I’m told I have to “BREAK” my daughter, I just want to scream, “WHY? She’s already perfect! Why would I want to break her?”

“We’ve lost the opportunity to train her,” my husband complains.

Train her? Like a dog?

What I want for my daughter is channel her energy. Get her to understand that things go in a specific order. “First do your homework. Then climb the rock wall.” Help her see that it really IS time to get out of the bath. Even if she is angry about it. She has every right to BE angry, but being angry doesn’t get her out of doing things.

All three of my children are Unique. Special. Individual.

I never want to “Break” them. I want to help them learn how to use their own unique and individual styles to move through the world. Help them learn how to communicate their needs. How to advocate for themselves. How to navigate social interactions. How to BE.
Not so much to ask, huh?

------

Ok, in other news, since I have not updated this thing in ages:

It’s nearly the end of the school year! Micah is actually finished with 7th grade; the last day of school was Friday and they are on a field trip today. He made such giant strides once we moved him from 6th grade to 7th grade mid-year. He really completed all the work, and brought his level of quality, especially his writing, way up. He’s a kid who rises to a challenge.

He had a great time participating in “Shrek The Musical” with the Framingham Performing Arts Center (PAC). He’s VERY popular with girls. He has an official girlfriend, but is frequently surrounded by other girls, especially on the Bar Mitzvah circuit. I probably should change his name to Valentino...

I’m going to miss him when he goes to camp this summer, but I know he’ll love it. And we were thrilled to find out this weekend that one of his bunk counselors is a kid from our shul, so he’ll have someone he knows right there with him.

Sam is nearly done with freshman year of high school. He’s in Exam Week now, and has completed two out of four exams. He’s looking forward to spending the entire summer at camp (Micah’s only going first session), and then wants to return to camp the day after he gets home so he can do the entire week of USY encampment also. Not sure about that.

He’s made his way in high school. David and I still have to constantly remind ourselves that Sam is an Introvert and we are Extroverts and That’s Ok. It’s tough! But Sam did love playing on the Ultimate Frisbee team for school, and made friends with a handful of other kids, too (including the son of one of David’s college friends!).

Miss Sofia is about to finish second grade. This is a big transition time for her. Last Thursday was her very last day as a student at MWJDS. There’s no way her split schedule would work with the rigors of third grade (especially since the Judaics become more text-based and she’s just a beginning reader). So now I have to figure out what to do about her Jewish education. I’m trying to figure out how to convince Gateways to do a satellite program in Metrowest, since I cannot bring her to Newton every week. If they don’t do it, I guess it’ll be up to me. Fortunately, I know lots of good people out here who could be involved.

She’s also moving up to a different school next year (Ashland groups all students K-1-2, then 3-4-5, then middle school, then high school, into different campuses). I think I’m more nervous about the transition than she is. She’s been at the Warren School for 6.5 years, since she turned 3, because the preschool was there, too. It’s going to be interesting.

She started taking the special needs Van to and from school a few days each week. Next year she’ll take it home, and take it to school only on the days when I don’t work at MWJDS (which might mean one day a week).

I’m going to be the Marking Associate next year at MWJDS. Cool. I really love working there!

Oh, AND I’m going to be one of the Gala Honorees! December 14. Cool!

David has been traveling less, but still off and on. He’s trying to be more involved in the kids’ lives, which is good. We are looking forward to spending time together this summer, especially since the boys will both be away ;)

Trying to start planning Micah’s Bar Mitzvah, and getting the front porch expanded, and might need a new refrigerator, since ours is leaking (David tried to fix it, but it’s still leaking). And I need another tire on my crappy minivan - tires should really last more than a year, right?

Enjoying the sunshine today.

Micah's "Save the Date" card

Micah Save the Date

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