Friday, October 17, 2014

31 for 21: October 16 & 17

October 16: Dancing Fool!

Tonight was Simchat Torah, when we celebrate by dancing with the Torah. This is truly Sofia's favorite holiday. She loves to dance. She loves to move her body. She loves the noise and the people and the excitement.

At one point this evening, all 9 nine Torahs were being held in a circle, as everyone danced around. And in the very center of the circle was Miss Sofia.

She loves to dance. I don't know if it's because of the extra chromosome, or if she just does not feel embarrassed to be fully and truly free in her dancing. But she is a wonder to watch.

October 17: Self-Talk

Do you talk to yourself? Out loud? I do. Most of the people I know do, too (even if they don't want to admit it!).

People with Down syndrome talk to themselves, too. "Self-talk plays an essential role in the cognitive development of children. Self-talk helps children coordinate their actions and thoughts and seems to be an important tool for learning new skills and higher level thinking."

(From “Self-Talk” in Adults with Down Syndrome, By Dennis McGuire, Ph.D., Brian A. Chicoine, M.D., and Elaine Greenbaum, Ph.D, 2005.)

Sofia talks to herself. Often. And often I talk back to her, because I don't recognize that she's just talking to herself. So I engage in and encourage the conversation, pushing her to expand from self-talk to interactive communication.

Much of the time, Sofia talks about her movies. She's really into "Frozen" just now, and likes to talk about snow and "Let It Go" (she has plans to sing that on "stage" at shul some time soon...). But she's also into "Tangled" (about Rapunzel) and the Madagascar movies and the Cars movies and the Despicable Me movies and Aladdin and The Frog Princess and Mamma Mia. And food

Often, people with Down syndrome will engage in self-talk throughout their adult lives - JUST LIKE EVERYONE ELSE. However, since they may not be able to identify it as "just talking to myself", often it is mistaken for a psychological problem.

"Since it is extremely difficult to evaluate the thought processes of adults with cognitive impairments and limited verbal skills, we urge a very cautious approach in interpreting and treating what seems to be a common and at times very helpful coping behavior for adults with DS."
(from the same article as quoted above).

 Right now, Sofia has me to "interpret" for her when she self-talks in public. But we worry - David especially - about what will happen as she goes off into the real world on her own more often. How will people perceive her when she self-talks? How will people treat her?

My own opinion is that all we can do is continue to educate and advocate. Any of you reading this now know something about self-talk. The next time you see an adult with a cognitive impairment engage in self-talk, you might be able to help advocate for them!

But if you see Sofia self-talking, feel free to ask her some questions! She's usually happy to try to explain what she's thinking about.

31 for 21: October 15 - in someone else's voice...

This appeared in on October 15. I'll let it stand as my own post, too.

How the Down community sugarcoats difficult realities about the condition

October 15, 2014 2:00AM ET
Thirty years ago, Ronald Reagan declared October Down Syndrome Awareness Month. Ever since, too many efforts at awareness have relied on pictures of people with Down syndrome being cute, accompanied by constant, upbeat assertions that they and their families are all very happy.
Throughout October, adorable photos of people with Down syndrome and heartwarming, inspirational stories will stream across the Internet, all in the name of awareness. Shirts declare that extra chromosomes make you a hero. Other slogans and memes praise parents of children with Down syndrome. One T-shirt proclaims, “No frowns, just Downs!”

In fact, sometimes my son, a 7-year-old with Down syndrome, frowns. So do his parents. In the Down syndrome community, we have worked so hard to promote the positives that too frequently we leave no space to discuss the struggles.

Inspiration porn

Down syndrome, also known as trisomy 21, is a common mutation in which early embryonic cell division results in an extra copy of a chromosome. It causes a wide range of developmental delays, from very mild to severe, though our understanding of the potential of people with the condition continues to evolve.

The Down syndrome community, understandably, is deeply invested in spreading the relentlessly positive messages about the condition. In March, for World Down Syndrome Day, people were supposed to wear funny mismatched socks in service of awareness. A viral video showed people with Down syndrome dancing to Pharrell’s song “Happy.” Another, “Dear Future Mom,” offers heartwarming testimony from people with Down syndrome around the world to a hypothetical future mother of a Down syndrome child. At the end, they assure her, “People with Down syndrome can live a happy life.” Over 5 million people have watched it. I love this video. Happy lives are good, but is happy enough? What about inclusion, support, jobs, education, accessibility? How do we get past the low-hanging fruit of happy to do the hard work that our community needs?

It’s true that cute can go viral in a way that serious and thoughtful does not. However, such images often generate superficial responses: Viewers see the pictures, say “Aww” and move on. They do not become more aware of the real difficulties faced by the disability community.

There’s a term for this: “inspiration porn.” It describes images and stories in which the everyday actions of disabled people are repurposed to inspire people without disabilities. In the Down syndrome community, we have come to rely on “cuteness porn.” We teach the public that our kids are cute, but if that’s the end of the interaction, we have done nothing to build a more inclusive society. In fact, we may have erected new lines of exclusion by implying that only people with “cute” disabilities matter.

Please try again

Part of the sugarcoating stems from fear. Down syndrome can be detected prenatally. As technology changes, more women are being screened early in their pregnancies, resulting in fewer people with Down syndrome being born (although the precise causality is hard to track).

In response, the Down syndrome community  is trying to change the perception of what a diagnosis means. Both pro-abortion-rights and anti-abortion individuals — including parents, caregivers, self-advocates and medical professionals — have joined in a loose coalition they have dubbed pro-information. Pro-information materials aim to correct the incomplete information that leads many women to terminate their pregnancies after a diagnosis or screening. The solution is to make sure that women in such a situation get a complete picture before making an irrevocable decision.

Pro-information laws have begun appearing in some states, though not without becoming tools for anti-abortion activism in some cases.

My son’s value as a person is not based on his cuteness. What matters is our shared humanity.
The pro-information message offers a well-developed and complex response that I support. Such thoroughness isn’t, however, how we generally respond when issues related to Down syndrome enter public discourse.

Here’s an example: In mid-August, the scientist Richard Dawkins told his million Twitter followers what he would do in the case of a prenatal diagnosis. He tweeted, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He then tried to explain that his core principle in life was “a desire to increase the sum of happiness and reduce suffering.” He saw Down syndrome as a devastating disability that increased suffering.

After Dawkins’ tweets, disability activists around the world leapt to social media, the press and the airwaves, sharing cute pictures of people with Down syndrome. And boy, are they cute — princesses and big grins (that’s Trig Palin) and so much more. The argument of all these posts and comments was this: If Dawkins wants to increase happiness, then look at our families; we’re happy, so Dawkins is wrong.

In The New York Times, two scientists joined the fray. Jaime Edgin and Fabian Fernandez presented research that individuals with Down syndrome can experience both happiness and success, citing data from many studies. The picture of general stability and happiness of families in which a member has Down syndrome has been called the Down syndrome advantage.

All of this is true. My son has Down syndrome, and at the end of every day, he walks into the kitchen, wraps his arms around his chest, then says and signs the word “love.” He calls us — “Mommy!” “Daddy!” “Ellie!” We all come, he leans on a parental shoulder, and the four of us embrace for an intense daily moment of connection. His love is the glue that holds our family together. We are intensely lucky and happy.

He also happens to be supercute. But his value as a person is not based on his cuteness. What matters is our shared humanity.

‘Cute’ discriminates

There’s another problem: Not everyone in the Down syndrome community is happy. I know people fighting cancer, parents fighting school districts, fighting to find respite care or fighting to locate meaningful work for adults with Down syndrome.

Moreover, the Down syndrome advantage, taken too far, drives a wedge between groups of people with disabilities rather than promoting solidarity. There are people with disabilities who are not, by the standards of our society, cute or happy. There are people whose disabilities make life very hard for them, their families and their communities. Disability can increase suffering. Disability can limit happiness. Disability can cause stress and pain. If we accept the premise that Down syndrome should be valued because people with Down syndrome are happy, then does that mean everyone who isn’t happy lacks value?

The Stanford art historian Sianne Ngai is an expert on the meaning of cuteness. She writes, “Cuteness is a way of aestheticizing powerlessness … Cute objects — formally simple or noncomplex and deeply associated with the infantile, the feminine, and the unthreatening — get even cuter when perceived as injured or disabled.” The emphasis on cute, sweet, angelic and similar flat positive stereotypes does two things. First, it renders people with Down syndrome less than fully human. Pets are cute; humans are complicated. Our fear of eugenic abortion has led the community to adopt a mode of representation that erases those human complexities.

Second, if abortion is the problem, then cute isn’t even the answer for that. If we assert that life with Down syndrome is valuable because our kids are cute and our families are happy, even if that’s always true, then all we do is push the eugenic line down the disability hierarchy.

As a parent of a boy with Down syndrome, I have committed to the long game, not the low-hanging fruit of cute and happy. My goal is not to save Down syndrome but to change the way we think about and understand disability, normality and diversity.

Step one: See the whole person, not just the cute face.

David M. Perry writes on language and power at How Did We Get Into This Mess? He is a history professor at Dominican University

But I've gotta have a photo of Sofia:

Tuesday, October 14, 2014

31 for 21: Oct. 10 - 14

October 10

Sofia doing math homework (VIDEO)

October 11: Down Syndrome Buddy Walk

Tomorrow is the Buddy Walk! Such a fun event. It's not too late to join us, too!

However, I'm completely tapped out of ideas tonight, so I'm just copying this from the Mass Down Syndrome Congress (MDSC) website:

The MDSC Buddy Walk® Program gives individuals, schools, community groups, and local businesses across the state an opportunity to get involved in fundraising campaigns and events year-round, all intended to promote the acceptance and inclusion of people with Down syndrome.
The statewide campaign is anchored by our signature Buddy Walk & Family Festival. It also includes major and minor events throughout Massachusetts, such as Buddy Walk by the Sea on Cape Cod, the Buddy Walk & Harvest Fair in Central Massachusetts, a number of school fundraisers, Buddy Bucks Store campaigns, and other fundraisers endorsed by the MDSC.

This year’s theme “Champions!” is based on the Boston Strong mentality of people coming together to overcome challenges and the positive sense of community pride that has developed as a result. We’ll be able to highlight the true Champions of the Down syndrome movement here in Massachusetts and demonstrate the resilience of our community and how we all pull together to ensure that people with Down syndrome everywhere have opportunities to lead fulfilling lives.


The Buddy Walk is an advocacy initiative launched in 1995 by The National Down Syndrome Society. It serves as a vehicle to generate significant awareness and understanding of Down syndrome nationally, while simultaneously raising critical funds to support local programs and services offered by The MDSC. As a proud affiliate of The NDSS, a portion of all proceeds from Buddy Walk campaigns go to support national advocacy initiatives aimed at improving the quality of life of individuals with Down syndrome.

October 12

No major post today for Down Syndrome Awareness Month. I'll let the photos speak for themselves - the Buddy Walk was FABULOUS! Miss Sofia was in a major grumpy mood the whole time, except when she got to see Tinkerbell. We are SO tired now!

Sofia with Arlie, Kendra and Kathy

Micah and David, looking cool


Sofia, Arlie, and Tinkerbell!

Blissing out in the sensory box

Ready to walk

Arlie, SamB and Victoria

Taking a call

Me and my girl

October 13: Being Herself

Sofia is all about being Sofia. Even when she is Princess Sofia - or Else (from Frozen) or Rapunzel (from Tangled) or Tiana (From the Princess & The Frog) - she is still Sofia. Her Sofia-ness is awesome.

She is never afraid to be herself.

She'll stop to do "yoga" or "exercise" in the middle of... just about everywhere.

She ran to join another family tossing around a football yesterday before the Buddy Walk. Just joined right in (and yelled "Leave 'Lone, Mom!").

For the past few months, she has been telling us that when she turns 10 (in February) she will get married. When I ask who she will marry, the answer is, "Sofia." Of course. Who else would be deserving of such awesomeness?

I'm not a shy person. (I know, news flash!). But my daughter's lack of shyness is breathtaking. She is so proud of herself. So bold. So brave.

I watch her, and I am ever amazed. And a teensy bit jealous.


October 14: Endocrinology

People with Down syndrome are more prone to thyroid issues. So we monitor Sofia's thyroid numbers regularly. Once, her numbers got closer to the "needing treatment" range, but then they went back to normal. Been fine ever since.

So we have been very lucky with that. But she still needs to have a blood draw every 4-6 months.
Blood draws - or as Sofia calls it, "Bloody Arm" - are not fun for kids. They are less fun for the grown-ups involved.

It generally takes at least three adults to hold her steady for a blood draw. She's gotten too big for my lap (which is a shame, since the blood draw chair also has that lovely built-in "arm"). So now she lays down on the bed, and I hold her upper body, non-draw arm, and her legs. A lab tech holds the arm that's being worked on. And another tech draws the blood.

The lab staff at Children's in Waltham is fabulous. Boston, not so much. They often have to call in a few extras.

When we take the boys for blood work, Sofia makes a big point of holding har arm tight behind her back and saying "No Bloody Arm" over and over. And moving well out of range.


Thursday, October 9, 2014

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.

Wednesday, October 8, 2014

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:

Saturday, October 4, 2014

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!