GQ Magazine...... Much food for thought

In a recent web slideshow John Thompson writes, "due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything." 


I am deeply saddened by this. I am hurt beyond words that this kind of thing is not only allowed to be published, but that someone is truly implying that my son's extra chromosome has ruined him & somehow ruined a piece of society. 


I sent my letter to the editors and so have many, many other people. Even the Boston Herald   publishes something in response to the despicable words Mr. Thompson chose to write and that GQ magazine felt was ok to publish. 


Many people say that we're to sensitive. Every group gets poked fun at. And that's true. Every group does get poked fun at, but most of the time.... those laughable pokes don't suggest that an entire group of people has ruined a piece of society. 


To say that I'm disappointed that the editors saw fit to publish this is an understatement. And I'm pretty sure that in 1931 when GQ was started, it was simply meant to be the "Vogue" for the men's fashion world. I don't think I have ever heard of Vogue magazine doing a piece like this. I'm sure I'd remember if there was controversy over Vogue doing a piece that was so insulting to so many different kinds of people. I guess the editors of GQ feel that controversy sells magazines. And they would be correct that controversy does sell magazines. Much like a car wreck on the highway causes traffic and rubbernecking so everyone can get a glimpse of the wreckage. 


So I guess like a supermarket tabloid, GQ has decided that quantity of sales is what truly matters. Not the quality of the pieces they publish. Thank you GQ magazine for clarifying that for me. 


For what it's worth, I know that not every person at GQ feels the way Mr. Thompson and the editor who published this slideshow do. But.... you're only as good as your weakest link. 


Here is the letter I sent to GQ. 

I must say that after looking at this slideshow and reading the descriptions...... I am highly disappointed that your editors would see fit to print something as disgraceful as: John Thompson of GQ magazine writes, "Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything!"

As a mother whose son happens to have Down syndrome, I'd really like to know what Mr. Thompson is implying exactly. Is Mr. Thompson suggesting that my son's extra chromosome has ruined him or somehow ruined a part of society?

It is this kind of thing that perpetrates the notion that people with Down syndrome are somehow not as good as the rest of the population. It also serves to not only make Mr. Thompson look like a fool, but makes your company look even worse for showing the world that you not only condone this kind of behavior, but embrace it.

You might do a good deed for the day & provide Mr. Thompson with the knowledge that everyone's genetics has schmutz on it. Maybe that little bit extra on one of his genes causes a specific cancer. Maybe he has a little something extra on the genes that cause Alzheimer's or a bigger than average nose. Guess what? I don't think those things make Mr. Thompson any less of a person. I think his closed mindedness does.

Maybe you should take a cue from Walgreens. They have embraced people with different abilities and are showing the world that people of every ability are not only worth every bit as much as "you" and I, but probably more so. Here is a link from their website,  http://www.walgreens.com/t​opic/sr/disability_inclusi​on_home.jsp. You'll notice it says, "inclusion". Not "Those bastards have peed in my gene pool." Again..... maybe you'll follow their lead. Maybe Mr. Thompson would do well with a little course in sensitivity training. Actually.... being that Mr. Thompson has already shown his true colors, your company would do well to no longer have this kind of person making contributions.

Very truly yours,

Jennifer Scott
Mother to a wonderful little boy who is genetically ENHANCED
And someone who'll be spreading the word about what has been published


If you so wish, you may send your emails to:


Letters@gq.com and webletters@gq.com. You can also click here to follow the links to send an email to the editor. 


Also, the slide commentary has been changed since it was first published to read: But Boston is the epicenter of prep style!," you say? That's true, but it's with a little extra that ends up ruining everything: ..."

Look what Seany can do......

And then he did some more this..... I couldn't push "record" fast enough. Do you see how proud of himself he is?



How we work the core muscles & have a little fun



In the mind of a 2.5 year old.

Simpler Times

As I drove home today from Caesar's Bay, I stopped on 86th Street and got my watches from the jeweler. Of course driving through the neighborhood I grew up in always humbles me. It always reminds me of simpler, more happy times in my life. Or at least they feel simpler & happier. I am happy now, but as I said yesterday, I feel disjointed.

Anyway, as I drove down 20th Avenue on my way home, "I wonder if I take you home" started to play on the radio.



I was suddenly transported back in time. I started to look at the store fronts and remembered them the way they were 27 years ago. I remembered Milk N Stuff and the shoe store owned by the old polish man and his wife. I remembered how big the check cashing place used to be. I remembered Willy's cleaners and the laundromat. I remember Simon and his wife who owned the candy store. I remembered how Simon would weigh pennies if you cashed them in at his store. It made me feel so peaceful to remember riding my pink bicycle with the flowers on the banana seat through the neighborhood.

And then I started to think...... My kids are not going to grow up in the same neighborhood or kind of neighborhood I did. When I was growing up the whole block knew who you were and would report everything you did to your mother. I had to be inside my house when the street lights came on unless my mother was sitting outside. When our building was brought out of the dark ages & the intercom was installed, I had to be within earshot of the intercom because that's how I was called. When I answered, she knew I was ok.

Yes yes. I know. Times are different now. The same evils were around then, but weren't as widely publicized. But.... the neighborhood was different. We knew who our neighbors were. All of the adults on the block knew each other. All the kids knew each other. No one ever said "I can't play with them because I don't know them." It was assumed that if you lived on the block, you were a friend. We didn't have to schedule play dates. We just went outside. We were neighbors. The kind that shows up on your doorstep and has a cup of coffee. Not because they were called & invited, but because they were friends.

Now my children are growing up in a time when I am paranoid at night that I didn't lock Meredith's window & it's on the fire escape. They are growing up in a time when I would rather (and am) send my Jewish children to a Lutheran private school so they can avoid metal detectors at the public schools. They won't know the same kind of sense of neighborhood like I did. And that makes me sad.

It makes me sad that I have to tell Meredith that if she's ever lost from Mommy & Daddy that she should look for a different mommy with children to ask for help. I have tried to tell her she can look for a police officer or fireman, etc, but that conversation ended in tears & her sobbing that she didn't want another mommy & daddy. She wanted me & Rob. It makes me angry, that in the wake of the horrible tragedy the happened to Leiby Kletzky, I have to tell my kid that if she's ever lost not to ask a random person for help. How do I explain that to a child who is almost 3?

Rob & I do try to create a sense of community for Meredith. We speak to most of our neighbors. Even if it's just a quick "Good Morning" while we walk the dogs. We want our neighbors to know us & know our kids. We want our kids to know there are good people in the neighborhood still. We don't want our kids to grow up fearful of the world, but they do need to be wary of the people.

Playing favorites

I often wonder if I'm playing favorites with my kids. I wonder if I favor Meredith over Sean. I always wonder if it stems from my mother seemingly playing favorites with my sister. Like now I'm over compensating and trying to make sure that Meredith never feels like her little brother gets away with everything or gets everything. It could all very well be in my head too.

Maybe I'm over compensating because Sean has so many things that revolve around him. He gets at least 3 therapists a week to visit him & play with him. He has to goto specialist after specialist (well had to really) and Meredith usually has to tag along.

I'm often left feeling so badly that Meredith's life has to revolve around so many aspects of Sean's life, but Sean's life doesn't usually have to revolve around hers. I have also been trying to simplify our lives.

What does it mean to simplify? Well.... in plain english I have been letting people know that whatever they have going on.... it just simply is not my problem. You're late for our meeting because your dog got sick....? Not my problem. Sitter canceled? Not my issue. Can't find parking? Don't really care. Next time leave enough time to find parking and you won't have that issue.

And I have to tell you.... it may seem pretty cold hearted, but it is making my life simpler because I no longer have to take on the burden of other people's problems. I have enough of my own & I still manage to be places on time and give people concrete dates for meetings, etc. I still manage to be able to call people back.

I have also been attempting to consolidate some of Sean's therapy sessions. I have been met with some opposition. I have heard everything from "Early Intervention won't approve it" to "Well my agency said I shouldn't write the justification". So in no particular fashion very clear terms, I informed everyone involved that if my family's needs, as well as the needs to ensure my sanity, couldn't be met, I would pull him from "that" portion of early intervention & do it privately. I do want Sean to get whatever help he needs, but I also have to ensure that everyone's, including my own, needs are being met.

My feeling is that "you" signed up for the job knowing full well what was involved. Now do your job and quit bellyaching. I also feel as though therapists, coordinators, EIOD's, etc don't value the family's time. I get the feeling that the therapist's feel as though because I stay at home with my children, that  have all the time in the world to be at their beck and call. I don't operate that way. I have a life. Especially since I have more than one kid.

Until now, I have tried to be understanding. I have tried to accommodate schedules because I know how hard it is to achieve a balance that works for everyone. But..... that came at the price of my sanity and Meredith's trust that her needs would be met.

I'm sure for a 2.5 year old, it gets pretty upsetting to constantly hear "We have to leave baby & head home so Seany can have his therapy with (insert therapist's name here)" I'm sure it leaves Meredith with feelings of jealousy & anger that she has to leave so Sean can go home to play. And I'm sure those feelings conflict with her undying love for him.

I know it leaves me with feelings of anger for Meredith and for myself. It leaves me wondering if ti's really all worth it. Is it really worth the constant burden I feel on my shoulders to make sure Sean gets his therapies? Is it worth the constant pressure I feel to keep doing for him? Is it worth the anger & hurt I feel because Meredith seems to be getting short changed in all of this? Is it worth the constant worry that I'm not doing enough follow through of the techniques? Is it really worth the anger I feel when I have to worry about make up sessions and therapists being paid, etc? Is it worth the anger I feel that Rob is hardly a part of this early intervention process? Is it worth the resentment I feel that there is no one that can take Meredith for special trips (lunch, tea, dessert, etc) while Sean has his therapy?

Most days, it's really not worth all that. It's not worth losing the enjoyment I used to have with my kids. Meredith especially. It's simply not worth the look of hurt on a 2 year old's face when she asks to sit on her mommy' lap and her mommy has to say, "no" because she's working with a therapist.

I know it's affecting her immensely because she's started to have some serious separation issues from me. Even worse than she did when she was an infant. And anyone who knows us from then, knows how bad she was. If people even so much as looked at her, she'd scream. Now if I even mention that I'm going somewhere without her, she immediately screams, sobs and nearly makes herself sick. It's really very heartbreaking.

So in the end... am I playing favorites? Probably. Sean needs me just as much as Meredith does, but in a different way. He assumes (rightfully so) I'm always going to be there when he needs me. Meredith needs a lot more reassurance that her mommy will always be there. Meredith relies on that input from me to be there for her. I don't know if it's a true insecurity, but she needs the security of my touch being right there.

I don't know what set this off. I don't know what else I can possibly do to reassure her that I'm always going to be here, but hopefully we can figure it out soon. Hopefully a little R&R will do us all some good.

We're taking a little vacation in the woods. We're going to PA for 2 weeks. We're leaving the guard dogs at home and our wonderful neighbor is taking care of them. I think..... I hope it will allow us to unwind and really get back to ourselves. Really figure out how to be a family of 4 without anyone else's input. Right now we're a disjointed family and it feels off. It feels like there's a kink in the hose. Hopefully with  little fun and a little relaxation under the stars without having to worry about who's going where, who's walking the dogs, etc....., we can find a new us.

When we get back, we'll be looking into therapy centers and trying to figure out if a center is a better fit for us than in home therapies. We'll be looking at more ways to simplify our lives and more ways to stay connected as a family. Maybe we'll start family game night with Candyland and Memory.

Any & all suggestions for fun family activities are welcomed. Activities that will really involve us all.

The day my son & I were born

We knew you were destined for greatness. We knew you marched to the beat of your own drummer. We just knew. What we didn't know was how great. We didn't know that Down syndrome wasn't going to make one iota of difference in your greatness.

It started when I was 13 weeks pregnant with you. Rob, Meredith & I went in for a routine check up on things. We told Meredith how exciting it was going to be for her to hear her baby brother or sister for the first time. We figured it was going to be so exciting for her to finally make a connection that there was a baby in mommy's belly. Only we didn't hear the baby's heartbeat. My midwife searched & searched, but alas.... it was nowhere to be found. We were immediately sent to Newton Hospital for an emergency ultrasound. Guess what?! Not only was there a baby in there, but it has a heartbeat. You were laying in such a way that the doopler could not pick you up. Now.... would she give us a guess as to whether Meredith would have a brother or sister? She did. How could she not? It was pretty unmistakable that we were having a boy.

On that day, we knew.... We just knew that you were going to be great. We knew you were going to give us a run for our money.

When we found out that you have Down syndrome, we were devastated. We didn't know which end was up. Our perception of the "illness" was not favorable. Heck.... I only knew one person with it and he was not what I'd consider a good model for what it could mean.

We learned all we could, but nothing could prepare us the way your birth could. We swore we'd done this just 2 years prior. We swore that raising a little boy couldn't be harder than raising a a girl.... except there was one more factor. You had a boo boo in your heart. It didn't matter though. Once you were here none of it mattered.

The first time I held you in my arms, I could not have fallen any more in love with you. I could not have wanted any little boy more. It wouldn't have mattered whether you had 3 purple heads. What mattered was that you were mine and you needed me.

There were so many people so eager to see you. To see your little face and little fingers & toes. There were so many people who hadn't even met me, that were eager to meet you. You were born a star! So many people were pulling for you to show everyone that the boo boo in your heart and your extra chromosome wouldn't slow you down. And you made everyone eat their words.

You taught me right from the beginning that I couldn't compare you to anyone else with Down syndrome. For that matter.... we couldn't compare you to anyone. I'm pretty sure you taught us all that lesson.

I looked for signs of Down syndrome in everything. "Oooooohhhh look at his tongue. Is it sticking out to far?" Or.... "Hmmmm what do you see in the eyes?" "How about the ears?" The one thing I remember looking for was a flat face and you didn't have that. You were so animated. All of your features looked like something from an Anne Geddes picture. I relished in the fact that you looked like us. You looked like Meredith. I was so happy.

When I was wheeled up to my room, I made sure that I was brought in to see you first. I wasn't going anywhere without checking on you in the NICU. I wanted to make sure that you were ok. And you were. We held you in our arms and you let us know that everything was right with the world. You immediately made me feel at peace.  There is no greater feeling in the world than to feel your precious little baby in your ams and know that no matter what, everything will be ok. And it is ok.

When we brought you home & you met Meredith, we knew there was an instant bond that no one could break. We knew that the love she felt for you was just as strong as the love we felt for you. Especially when she shared her beloved stuffies with you.

As you grew and showed us how strong you were, we were always impressed. Always impressed with the many things you were capable of doing. You always knew when we needed to be lifted up and showed us a new trick or mastered one. You made Meredith giggle and gave her an opportunity to teach you her world. It has always been so endearing to watch her be your guide.

 

When it came time for your surgery we were all so scared. Daddy & I didn't know how we'd get through it. There is no way in the world to prepare yourself for the many "what ifs" that can come with open heart surgery. Handing you to the nurse was the toughest thing I have ever had to do. As I held you tight, I knew you trusted me. I knew that there was a chance I'd never see you again and your last moments wouldn't be with me. Until that moment I had been able to deny that. I wouldn't rest easy until you were safely back in my arms. I wouldn't rest easy until you were snuggled close and smiling your trusting smile. Having you back in my arms after your surgery was almost to much for me to bare. As soon as I knew you were safe and didn't need to go back to the operating room, I allowed myself to feel all of the emotions I had denied up until that time. I immediately felt fear. I felt love and happiness that your boo boo would finally be fixed. I felt relief that we wouldn't have to live under this veil of "what ifs" anymore. When I got home that night, I hugged Meredith more tightly than I ever had before. I wanted her to feel the intense amount of love & relief that we all felt. I couldn't imagine ever losing either of you and now I didn't have to.

As you've grown into such a little boy, taking on countless adventures.... you've shown us that your extra chromosome has only made you more determined to show us that you have your own way, Down syndrome or not.You have taught us that you have to master every step of the process. Not just show us a finished project. And w have learned to relish in your accomplishments. No matter how small others may think they are.

You taught us that it doesn't matter that we just did "this" with Meredith. We still have no idea what we're doing, but we do it with love in our hearts.

The way you explore your world is actually quite spectacular. The way you figure things out and figure out how they work and what they do is remarkable. Now... I have no idea if your dissection of life is due to being genetically enhanced or not and at this point I don't care. You are a rock star!

With each skill you master and with each step you take, you teach us something. You teach us to really take our time. You teach us daily that everything has steps and that every step is important. For that we thank you.

You have shown us how "typical" you really are. Especially with your love of tormenting your sister. We knew that this was going to happen eventually. We just didn't know you were going to start so early. I find it amusing... Meredith..... not so much. We also love that you love her so much. And we know she loves you. Sometimes I catch her playing with you like you're her own doll. She plays dr and you're always the patient she needs to get better. She remembers when you had a boo boo in your heart and always tells me that you're "all better now." She also has her own ways of getting you back. When we have to goto a dr's office, she always makes sure it's for you and not for her. It's like her way of saying "Ha Ha. Next time don't pick on me and I won't send you to the dr."

You always continue to show us just how strong & strong willed you are. You show us that as soon as we start to worry about something, we didn't need to worry after all. I always worry that I'm not doing enough for you. Or that I'm not finding the right balance. I worry that I'm not a good enough mommy for you & for Meredith, but you both always show me that you think I am.

Because of you, all of us venture just a little bit further from our comfort zones. Because of you we take more risks & we challenge our every day. We have made wonderful new friends that we treasure. We Thank God every single day for trusting us to raise you. We were once told that God doesn't make mistakes and we didn't believe them when we found out that you had Down syndrome, but it's true. God made you who you are and he didn't make any mistakes. You are perfect! 

We love you Sean. We thank you for showing us that there are so many "normals." We are proud of you for doing things your special way and we hope you continue to do it that way. You have given us a new purpose in life. We hope that the next year will be just as exciting. Happy 1st birthday my little man.









P.S. Please excuse the Kiddie Kandid proofs. We haven't gotten our package prints yet. I think they did a fabulous job and the photographer kept the kids happy.

So at 1 year old what can Sean do & what are his stats?   

• Sean can roll around all over the place. He is now a rolling fool
• He can pretend to drink from a cup
• Pretend to eat with a fork
• Almost pull to standing
• Almost get up on all 4's consistently
• Almost put himself into sitting
• Melt your heart with his smile
• Give hugs & kisses
• Stand on his own when holding onto something

These things are in addition to the things he already knows how to do. 

• Cardiology..... Graduated to once a year visits!!! 
• ENT.... Hearing test = Passed and no other issues
• Ortho.... Nothing wrong with his bones
• At 1 year old Sean weighs 17lbs, 14 oz and is 29.5 inches tall. By the way.... Meredith was the same height at 1 year old. 
• Assessments..... Fine & Visual Motor Skills, he scored average for his age. Speech.... 9 mos for expressive language and 11 mos for receptive language, Cognitive was a slight delay, but closer to average than delayed. If that makes any sense. And I don't have the scores for gross motor skills. I do know that he is pretty delayed compared to typical kids, but right on track for a kid with Down syndrome. 

Independence.......

This year independence means a lot more for me. Last year for the 4th of July we were anxiously awaiting the arrival of the newest member of our family. Sean was safely tucked away in the comforts of my belly. We knew he was safe there. He wouldn't have any heart issues in there. Of course we knew he'd have to come out some time.

I had really hoped that if he was going to come early (I was due July 19) it would be on July 4th. Unfortunately for me it didn't happen. I'd have to continue on through some of the hottest days on record just a little bit longer. I so longed for my independence from him. Don't get me wrong... even though I knew he was safe and even though having him in there gave me the freedom to tote my big behind around in a bikini just a little bit longer..... I longed to.... yearned to see my toes without having to contort in so many different ways. I longed to be able to sleep without swinging my big belly over every single time I turned in my bed.

I needed to be just me again. Not me plus 1.

Of course he came with much fan fare and we decided on a date for his heart surgery. October 4, 2010. That was exactly 9 months ago. I handed my son over to the best surgeon & his team and prayed hard that he would be returned to me with renewed independence. I prayed that he would be freed from the oppression of a bum ticker. And he was. He was given a new lease on life. His bum ticker lived to beat again and beat better.

It's Independence Day 2011 and I'm thankful for the men & women who have & continually fight for our freedom. I'm also thankful beyond words that my son is here, alive & well.

Let him eat cake!!!

As we prepare for Sean's birthday, we though it would be a good idea to make sure he actually liked caked. You know before I wanted to get the coveted cake smash pictures only to discover that Sean hates cake and wouldn't give up the shots. I know.... Sean not like a food much less cake? HA! I've heard of it happening.

Who's better than Sean? He got to eat his cake NAKED!! Is there a better way to eat cake? I think not. I tried to put a hat on him, but he was having no part of it. Oh well. Maybe next week he'll be to distracted by the party to care about the hat.

When we put it in front of him, he didn't know what to do with it. He kind of stared at it from all angles and then kicked it. Hmmmmmm ok. Rob & I put some frosting on our fingers & let him see that it tastes good. And that's where the fun began. The poor kid had icing up his nose, in his eye and all over him. But he loved it. He had a ball and I got some cute pictures. Best of all.... next week he'll eat his cake with no meltdowns on his 1st birthday.












   
























































Of course when you leave an infant without a diaper to long some things are bound to happen. He's bound to pee at some point. A friend of mine said, "It's called marking his territory. Nobody asked him for a piece after that, did they? No Erin, they didn't. :) 
He enjoyed his cake, we enjoyed watching him and then he enjoyed a quick bath.