At one point during circle time, Kevin started falling to the side while positioned in his adaptive chair. There was a brief exchange among the teachers, the PT, and the OT as to whether they needed to let Kevin try to work to sit up (because he can) or to support him a little more. As the exchanges flew back and forth, Kevin’s grandma spoke up firmly but humbly, “He can sit up.” She took a quick breath and said again, “He can do lots of things.”

I wish you could have heard the conviction in her voice. I wish you could have seen how deeply she knew the truth of what she said when you looked in her eyes. I want to stop circle time and hug her right there. I wanted to say, “I get it, Grandma. YOU know all that Kevin can do and they’ll never know all that you can know. You know how amazing he really is.” I could feel her sweet yet protective heart saying, Don’t just go by appearances. Appearances are deceiving. There’s more here in this boy than you can ever dream of.

I know what she’s feeling because I feel similarly about another little boy named Dean. Many will misunderstand, many will look at only scores or physical appearances or preconceived notions about what one “should” be able to do. Only those who take the time to look closer and open their minds to possibilities really will get it.

Isn’t this true of so many people, not just those with special needs? We can stick with a preconceived notion, or we can dare to love and dare to know them a little more. So go do it. Let someone blow your mind and tear apart your expectations. Find yourself saying, “She/he can do lots of things, more things than I initially thought.” I know I’m learning more about how not to box people in, because I want that same grace to be afforded to my own son, my other sons, my family, myself.

*Getting up in the morning Ethan has to shower before school. If we are on a timed schedule and he does not get to shower, a meltdown ensues. This often results in a balled up fist, biting his bottom lip, and a serious urge to hit until he gets on the bus. Thankfully I have phrases that work him through it most times, but other times I have to warn his teachers about his mentality headed into school!

*I wake up at 6:30 am each Mon-Fri. I BATHE, BRUSH THE TEETH of, and DRESS my almost 10 year old son because he doesn’t have the skills he needs to properly do these things. It can take up to 45 minutes each morning for me to get him ready for school. I have to let him attempt to bathe himself, and then I have to go in later. Repeat with teeth brushing. I have to do his hair. Then I let him attempt to dress himself and what he doesn’t finish, I do. I also have to tie his shoes and zip his coat because those are two skills he cannot do at all (although he can zip once fastened). This is all before school, and if a meltdown occurs over the morning movie I put in (routine, expected) or something random that sets him off…it can put us behind! Keep in mind I also have a 4 year old daughter that I do all of these things with as well…but she is not so high maintenance and usually her hair is my hardest part!

*Ethan’s teachers deserve a TREMENDOUS amount of respect for what they endure each day. My son alone has aggression issues and I know what they can (and often do) encounter. Over the years Ethan’s aggression issues have minimized a great deal, but they still exist! He pulls hair, hits, and occasionally kicks! If you have seen the size of my son, you can probably assume how pleasant it is to be behind his weapons of mass destruction. When we first arrived here I had to ask for a daily sheet home to determine how much aggression he was having at school. Over the years his teachers have mastered amazing “send home” sheets that tell me about a large majority of his day. On the days he is aggressive, I know about it and it is immediately discussed. He also does not lie or deny his actions. 90% of the time he just needs one warning throughout the week about not receiving his weekly reward (look back on blog posts about our program at home).

*The aggression issues that they encounter at school, we also encounter at home. Meltdowns don’t just disappear. Depending on where he is that week emotionally will determine the amount of meltdowns he has. Some weeks are great, and other weeks there can be some serious struggles. Jim has suffered from some serious battle wounds because he takes on the brunt of it. (Yeah, he’s amazing…God knew we would make an amazing team!)

*I wipe my almost 10 year olds bottom. Yup. And he didn’t potty train until he was 5 years old! I’m not talking about night time training; I’m talking about full on daytime diaper wearing because he wasn’t able to process WHEN he needed to use the restroom. We still have issues with #2 and if he is involved in something…he doesn’t process it. What does that mean for us? Exactly. There are certain periods where we are buying underwear in bulk.

*We are able to do a lot of things as a family NOW but not without offering up major rewards. Did you know that we can spend up to $250 some months on rewards for Ethan ALONE just to do family activities? Yeah, you probably thought it was a breeze for us to just walk into places like Applebee’s and have a sit down dinner. No, No. We have to ask for the furthest seat from people, bring games/phones/etc. for him to occupy his mind, and make sure his order is the FIRST to arrive. It’s a process. And then we have to reward him for it. Going to the store? Ethan never walks out empty handed. Rewards. You may call it spoiling, but I’m apparently doing something right if so many people think he is easy =)

*We don’t do a LOT of things. We make so many sacrifices you couldn’t even begin to comprehend them. The difference is we don’t CARE or COMPLAIN. We also make things work if it’s really that serious. For instance, my wee ones love Chuck-E-Cheese. Due to Ethan’s severe character phobia (he doesn’t comprehend it isn’t real), he simply cannot go there on the off chance Chuck-E walks out (aaaaand that was a fun day). So we occasionally take the wee ones on the days Ethan is in school. Do I hate going to places like this without him? Oh you have no idea (each time we go we take videos to show what he can GAIN from going like the “Noo Noo” ride and PIZZA)…but I know that it’s harder on him to GO than it is for him to miss out. I have to rationalize so many things in my mind to get through it. But we make it up to him in other areas and places that he loves to go like Pizza Street and Jumping Jax! Even if he doesn’t know we went out, WE do and we make it up to him!

*He doesn’t understand the concept of money. If we are having a hard month, we still have to get him his weekly reward…and sometimes that can be up to $30! He has EARNED it though. We don’t just get him stuff because we are spoiling him…you have no idea how hard it is for him to do certain tasks!

*If he wants something we can’t afford, if he sees a character out of random, or if he generally is just not up for whatever is going down at the moment…meltdown city. Middle of the store, wherever. His initial reaction is to always RUN. Run as fast and as far as he can…and let me tell you he is blazing fast sometimes. After you finally catch him he typically gets very aggressive to release your grasp on him. My son is an inch shorter than me and about 20 lbs. lighter. Imagine how this looks. But do I give a rats behind? No. I call it Autism Tunnel Vision. I don’t see you, and I pretend you aren’t seeing us. There’s a brick wall surrounding us and in my mind the public is no different than at home. This prevents me from trying to calm the situation differently. If I am focusing on what other people are thinking, I’m not thinking about HIM and that’s where my mind needs to be. I won’t ever see these dang people again…I don’t care. But he will probably never forget these moments. What’s more important? Exactly.

*My son eats horribly. You know all that processed food that you hate, and how judgmental some of you are about not eating “green” or “organic.” Yup, that’s my kid…and I don’t care. Yup, meat is bad for you…but guess what my kid loves it and if he is willing to eat it I’m willing to give it! Do you know how hard it is to HAVE to rationalize something like this in your mind? To HAVE to accept that your child eats like crap and you just have to be accepting of it…otherwise he will starve? Exactly. That is not easy my friend, not in any way, shape or form!

*Family makes some of the NASTIEST remarks. I’m going to throw this out there, and I don’t care what kind of backlash I get from it. Some of our family members have been our biggest critics regarding Ethan. Our parenting can go one of two ways. Either you are for our parenting or against us, and it appears many family members are against us. 99% of the time they just DONT get Autism and they never will. They compare him to typical developing children (DO NOT DO!!!!!!!) and make constant snide remarks about it. We have to chalk it up, and sometimes that can be the hardest of pills to swallow. Listening to people tell you that you aren’t doing enough or trying enough is HARD…and you can do nothing but remind yourself that they don’t want to educate themselves, they don’t want to educate themselves, therefor it is a lost cause and you just have to keep moving on.

*Ethan never sees his real father. He went 7 years enduring deployment after deployment after deployment, but he at least got to see him every blue moon. If he makes it until May it will have been two years since he last saw him. His father never tries to Skype with him (ONCE in a year and a half!) and always acts annoyed on the phone because he can’t understand Ethan. This causes Ethan to have a LOT of emotional outburts and confusion. In a typical developing mind this is hard enough; imagine what it is like in his world. This is never NOT a battle in our home and his father will never get it =,(

*My son just started to talk at about 7/8 years old. At almost 10 his receptive language is doing decent, but he still lacks in expressive language a great deal. Imagine teaching a toddler to talk and how hard it is to understand them sometimes. Each day brings a new sentence or phrase and there is never a time that we don’t recognize it! This can be quite difficult at times though during holidays like Halloween and when people ask him things expecting a full on response. Typically developing children tend to exclude him because of how he talks (and this is soooooo hard to see). The only time I ever find myself jealous of somebody else is when I hear someone’s child got an Asperger’s diagnosis. Only because that means they TALK. Sometimes I would give the world to hear what is going on inside that beautiful mind of his, but he has no idea how to say it =(

*Ethan stems a great deal, all day long. He paces floors and flips a neon straw in front of his eyes (as mentioned in another blog as well). While doing this he talks to himself repeating things from movies or TV shows. Sometimes these things are good, and sometimes these things are bad. Can you imagine how many looks I get from people who see THAT? Yeah, I don’t care. Autism Tunnel Vision!

And lastly, for now…just imagine how long it took for me to be okay with how we are perceived as parents. How long it took for me to not care what other people thought. Or how long it took me to rationalize many of the things I stated above JUST to get through certain tasks. How easy do you really think I have it now? When you look at your typically developing child and see them doing things that come naturally, think about how hard it is for Ethan (and other kids with Autism or Special Needs). Not a day goes by that we don’t encounter some kind of hurdle that we need to overcome…but we do it, as a family, and we will never complain about it! God gave me this amazing, beautiful little boy and it is MY job to take care of him. Most of you have absolutely no idea how long this journey has been. The therapies, the intense phases, the meltdowns, the school changes, etc. If you think this is easy for me, it’s only because of how hard you have it now…and remember that HE and I and his school STAFF have busted our butts to get him to the place his is now! I saw a phrase today that makes perfect sense for this moment…

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Instead of sitting around making wishes, put forth the time to make them come true!!!

Oh and if I hear one more person say “I wished this and this for my child…this isnt what I wished for…” you better hope I’m not close to you, because I will likely give you a major mean mug stare. My child is everything I could have ever wished for. Some stupid diagnosis will never change that!

I guess the neat thing is that it makes us memorable. People remember Dean (and Cole & Emmett, too) after being at the children’s museum or the mall or whatever even just once.

Recently, I took the boys to the playplace at the mall to give them a change of scenery. A family – mom, dad, and little boy clutching a Barbie doll (it was really cute) – came and sat down. The dad was watching us a bit, not necessarily in a weird way, just watching. Then he looked at Dean, looked at me and said, “Was your son in a walker to get around, maybe 6 months ago?” I thought about it and said, “Yeah, he was.” He got a huge smile on his face and said, “Man, he’s getting around so well now. I remember him when we saw him.” It’s easier to remember someone when they had a bright yellow walker to get around. But what was impressed upon me was that this dad was proud of our Dean. He didn’t even know him and his smiled ear-to-ear and just watched him in awe. My heart was happy. I pray that that realization for that dad was something that gave him a boost for that day and blessed him. That’s what it’s all about.

I don’t know about you, but I need these times to reflect. Life is busy. Days with 3 little boys who are up early and don’t really nap are busy and without much (if any) downtime. There is always something to do, something coming up, something going on.

But reflection is still really important.

When Dean was born, I remember hearing the words “I’m almost positive your son has Prader-Willi syndrome” from the geneticist who saw him at two days old (thank you again, Dr. David Harris; you will always be a special person to our family). We learned about Dean’s prognosis, potential issues, and quality of life. I remember being so very desperate just to know how long we might have Dean in our lives. The answer was, hopefully, for a long time. And then, I committed, for however long that time might be, to give Dean a good life. I held my tiny, floppy baby in my arms and tears fell all over him as I swore that we would give him a good life. We couldn’t overcome this horrible disease that was sabotaging his body, but we would make all possible light and good come out of it.

I have never felt that determined in all of my life.

And in many ways, it was a resolve to be THAT parent to all of my children, past, present, and future (to be clear, Emmett is it, as far as we know in terms of future ). Like standing in church and witnessing the baptism of another little soul, it was a re-commitment to my role as Mom and advocate for these precious boys.

Today was another day where I thought back to this. All 3 boys are sick and have been to the doctor in the past day or so (Emmett coincidentally for a well check, so that worked out). When my boys are sick, they slow down only briefly, but it’s enough time to stop and reflect on where they are as little people. I’m not thankful they are ill, but I’m thankful for the time to slow down and be more fully with them. I’m thankful to be their mom. And we’re going to give them a good life. All of them.

One of his favorite things to do is look up Teletubbie lots on Ebay. “Lots” are bulk items in one particular option. He admires the images of these lots and yearns to collect all of the items in each picture. Here is an example of a current Ebay lot he is admiring. He has all of the VHS’s except “Favorite Things” which he is working for this week.

Today he turned the tables though and shocked me. While putting my two youngest children down for a nap, my oldest came in with extreme excitement asking for my camera. Nervous, I allowed him to take my camera and off he went to his bedroom. I secretly sat outside of his room to watch what he was so excited to take a picture of. It was his collection of Teletubbie stuff! After he was done taking pictures, he came into the front room and asked me to load the pictures up onto my computer. He was so elated with the collection he had made for himself. He then asked me to post it on Ebay for him! Here is the picture he took:

Now of course I am not going to allow him to sell these on Ebay. Matter of fact, I am pretty positive that he has no idea what this would even mean for his collection. But I did agree to start printing out the pictures, and we will start making a photo book of all of his progress. I have never seen him so excited!

Each day I try to teach this child something new through our “jobs,” and each day he manages to teach me something new as well! In order to succeed and be blissfully happy in the world of Special Needs, we need to always have an open mind and an open heart. We need to learn from them as much as we expect them to learn from us.

If you look deep enough, there is beauty in the madness.

Easter Seals’ Sketch-A-Space competition, supported by Google SketchUp is an incredible opportunity for people with autism, those interested in learning more about autism, or those who have someone in their lives with autism to celebrate the unique and critical contributions people with autism make to our nation’s workforce and to show off their creative abilities.

“Easter Seals’ Sketch-A-Space contest aims to raise autism awareness and increase community understanding that individuals with autism can be successful in the working world when they have access to the supports they need and find the right job match,” says Tom Wyman, manager of business development, Google. “We hope it will encourage employers to consider individuals with autism and other disabilities and provide an avenue for creative expression.”

Entrants use the free Google SketchUp software to design their dreams for employment—for a chance to $3,000 and improve their resume and employment portfolio. The competition also allows participants to:

Raise autism awareness
Show off art, architecture and design skills
Educate others about employment opportunities for individuals with disabilities
Expand resume and employment portfolios
Display visual and spatial strengths as a person with autism

Learn more at www.easterseals.com/sketchaspace. Enter between October 12, 2011 and December 15, 2011. Winners will be announced in January 2012.

My Boys (middle) with their "typical" classmates

I’m on a listserv for parents of children with Down syndrome and there’s been a heated debate over the question one parent asked: ” I’m thinking about homeschooling my child with Down syndrome vs. sending him to public school.  Would love to hear what you do, why you chose that path and how that’s working?”

The parents who responded are passionate in both directions… myself included — in both directions LOL. Below was my last post – and I don’t mean the most recent in a string but the last time I’m weighing in on the subject b/c the horse is dead and buried.  The parent who asked has probably stopped reading and we’re arguing amongst ourselves when everybody is right and nobody is wrong!

“I agree with everything that everyone has said most especially because each of our children are unique and need a unique educational solution that often can best be addressed at home if the parent has that fortitude. For the same reasons cited by each and every one of the homeschoolers, the public school system is often failing, or at the very least under-delivering to, our typical children just as much as to our children with special needs. I know this personally, because I have a “typical” child who doesn’t learn typically. She’s gifted and the school system is not addressing her needs… though her teacher is trying. And, though she’s in the gifted program, that’s all of 4 hours per week. While she loves those 4 hours b/c they address the way she thinks, what about the other 36 hours per week they have her???

Someone was trying to make the point (though not in such nice words) — and I couldn’t agree more – that inclusion is as much about the OTHER kids in school and in the community coming to love and accept our children as it is about our children getting educated. Those OTHER children need to be exposed to and learn to accept and embrace people with special needs before they get into the workforce where their opinions about the matter are already firmly established… and often wrong because they’ve never really known someone with autism or they’ve been educated separately (even down the hall in another classroom is separate) from someone with Down syndrome. A study in England stated that entrenched negative impressions of what people with special needs are capable of were found in children as young as 7 years of age. Negative impressions “ENTRENCHED” at 7!  That means they’re getting their “education” about special needs at a very young age from their parents whose thought processes on folks with special needs are generally antiquated, limited, wrong… unless the child or the parents have been exposed to someone with special needs personally and recently (because things have changed drastically in the last 15 years). Getting our children with special needs out there and in their faces in Preschool, Kindergarten and elementary school is key to winning over the public to acceptance of individuals with special needs. Inclusion is a functional methodology in education, community and the workplace to help us fight and win the war! 

Inclusion is good for E V E R Y B O D Y!

That said, I feel strongly that not a single one of us should sacrifice the education of our child with special needs in favor of putting him in an educational setting that doesn’t work for him just to influence other children/people in the community. My child’s education comes first, educating the public comes second. I happened to have worked very hard and long (for years before we came to kindergarten) to come to an agreeable inclusion solution for my boys through our local public school and special needs committee. They knew me and knew definitively what I wanted for my boys (and that I would not settle for less) long before we came to kindergarten… and, hopefully, it works for us. I work just as hard at community inclusion and exposure.

Sadly, those entrenched negative impressions about people with disabilities are hard to budge in the older folks… Older than 7, according to the study, and I’ve experienced that too! We’ve all talked about the negativity we feel in the looks and comments we get in public sometimes. We may not be able to re-educate those older folks, but we can properly educate the young ones by doing the best job we can of integrating our children with special needs into our schools, community and work places every chance we get. Homeschool if you want.  That’s fine!  But consider sending your child to the public school for INCLUSIVE extracurricular activities (absolutely permitted) or INCLUSIVE summer camp, maybe.  Sign them up for the local t-ball league… No, it doesn’t have to/dare I say SHOULDN’T be for children with special needs… I personally believe it’s better if it’s not a segregated program.  Integrate your child with special needs with “typical” children every chance you get. Your child will learn t-ball and soccer from kids who can play those sport better than they will learn from kids who can’t play them.  Mommy and Me classes, yoga, karate, library activities.  Go for it.  Include! Include! Include! Expose! Expose! Expose!

Those of us fighting the good fight today are not only paving the way for acceptance and opportunities for our own children today but for every person born with a disability going forward. For the mothers of children with special needs 100 years from now.

OK, off the soap box for God’s sake, Maggie. Sorry — can you tell I’m passionate about this?  LOL. You get the picture….

How you choose to educate your child is your personal decision. Homeschooling can work well. So can public schooling. Both require a LOT of dedication and work on the part of the parents to find the right formula and make it work for our children with special needs. Good luck to the original mom who asked. She’s probably so sick and tired of reading the back and forth on this topic and tuned us all out. LOL.

More from Maggie at www.walkonthehappyside.wordpress.com

My boys & their gen ed classmates

It amazes me when people don’t embrace My oh-so-embraceable Boys.  And just as amazing that some, untainted-by-societal-rules, so readily DO!  Inclusion is about embracing.  Not tolerating!  It’s about arms-open, full-out, just-another-kid (who needs a little extra help) acceptance.  Unfortunately, that brand of inclusion doesn’t exist in most places today because of how we have separated folks with disabilities historically.  And, sadly, it does not exist in my school district either…. YET!  As we parents advocate for the implementation of research-based best practices like inclusion for our children with special needs, we’re fostering the baby steps needed to realize the inclusion dream that I’m talking about. REAL inclusion!

After 2 years thriving in integrated preschool classes containing 17 children—half typically-developing and half with various special needs, My Boys were assigned a split placement for kindergarten.  They spent 3 hours in a contained class with other children with special needs where they received 90 minutes of academic Discreet Trial Training per day, along with all of their related services including physical, occupational and speech therapy. THEN they spent 3 hours of uninterrupted inclusion in a general education classroom with a 2:1 aide.  Elements of this arrangement were supported by best-practice research including Discreet Trial Training to foster academics by addressing potential short-term memory issues common in children with Down syndrome AND inclusion in the general education setting where, statistically, children with Down syndrome fare best academically and socially when they are educated side-by-side with their typical peers (with support).   NOT segregated!  So, on paper, this arrangement appeared to be addressing some of the academic and social needs of My Boys.

At the first school-wide Class Mom PTA meeting, I sat alone at a table for The Boys’ contained class that I took the liberty of moving to adjoin their gen ed class so I could participate in both groups… just the way My Boys participate in both classes.  A handful of class mothers from the gen-ed class were chatting lively about the year’s planned activities when I introduced myself and offered my unofficial help for their class. A momentary undercurrent charged the air; Perhaps they were thinking, “Get lost, you’re not a class mother in our class” or “OH, you’re THEIR mother!”  Or, “I don’t want your kids in my child’s class” (I’d overheard mothers speak these very words about other children with special needs when my Old Soul was in kindergarten, before The Boys graced my life); Or maybe they were thinking, “WHO are you? I didn’t see your kids’ names on the class roster!”  One mother meekly offered up that her sister’s brother-in-law’s, sort-of-aunt had a child with Down syndrome many years ago.  She met him once.  He was nice.  Then they went back to their chatter, their backs turned toward me.  Foreshadowing; though I did not know it then.  I was not REALLY included!  I was on the fringe.   

But in school, inclusion is not about being on the fringe. It’s about being right smack in the middle of the fracas just like everyone else!

My Boys and I spent our whole kindergarten year on the fringe in that gen ed class.  They were fully included in their “contained” class because society and the aides in the class were taught to believe My Boys belong in a segregated setting.  However, in their gen ed class, they were only really included by their classmates, “typically-developing” children whose heads have not yet been filled by societal notions of where My Boys belong or do not belong!  In practice, their gen ed teacher segregated My Boys with her preconceived notions and imaginary, they-can’t-do-that walls.  For three hours per day, she “placed no academic requirements on The Boys whatsoever” as she proudly admitted in our end-of-year CSE meeting; Openly stating that she met their goal of socialization; the sole purpose of their presence in her class!  (Are you gasping the way I did at her antiquated and ignorant beliefs?)  To add insult to injury, My Boys were purposefully NOT included on the gen ed class roster (administrative policy) that resulted in the teacher ocassionally forgetting to include them in activities or events and the parents of their gen ed classmates not knowing who My Boys—or I—were for the better part of the year.  A few inquired when their children came home talking about their classmates, My identical Little Men, whose names were not on the distributed class list OR when my involvement or presence in the class begged the question, “WHOSE mother are you?”  Not being on the roster and token inclusion also meant the gen ed teacher had no communication responsibilities to me or academic responsibility for The Boys.  It meant not being invited to their classmates’ birthday parties (invitations distributed to kids on the roster).  It meant being “forgotten” for the monthly in-class birthday party (“oops”), and it meant almost not having their yearbook pictures appear with their gen ed classmates (with my intervention, their pics were included with both classes).  While it was inclusion for the kids in the gen ed setting—some of them exposed to children with Down syndrome for the very first time… and that’s a GREAT start—it was not real inclusion being practiced for me or My Boys, nor for the teachers, aides and administrators.  For the school and district, it was token inclusion and a very tentative first step toward including My Boys, and it was a year for me to get my feet wet in how this whole thing is—or is not– working.  NOW, I’m ready (or not) to take it on!

As we prepare to repeat kindergarten—my choice: I believe in fostering a stronger academic foundation on which The Boys will build the rest of their education (instead of playing catch-up for 12 years)–I’m hoping I learned enough last year to foster some REAL inclusion this year.  I’ve already explained to the CSE that My Boys will NOT spend time in a contained class again, and backed up my conviction by playing hooky from “contained” Summer School.  And, I’ve had a preliminary meeting with their new teacher to ensure she understands and accepts that, regardless of what the administrative roster says, as far as I’m concerned, My Boys are HER students and she is responsible for their academic progress and communication thereof.  The special ed teacher—whose roster actually lists their names—plays a supportive role to her in implementing the academic Discreet Trials and modifying classwork, not vice versa.  And, academic progress is the primary goal for my children just like it is for everyone else in her class; socialization is secondary! 

I’ve got much more to do before school starts in a few weeks including getting approval for and setting up specialized inclusion training for The Boys’ teachers and aides at Long Island University’s Center for Community Inclusion, with a crash course in the nuances of educating children with Down syndrome presented by Dr. Kathleen Feeley, the regional expert in best practices in educating children with Down syndrome. Yes, I’ve got my work cut out for me in cutting their work out for them if we all hope to take a few big boy steps toward real inclusion to change the immediate future for My Boys and the long-term for every child who comes after them–with and without special needs.

And so I blinked and find myself 10 weeks in to little Emmett’s life and I’m tired. Tired from sleep deprivation, of course, but I’m tired of thinking about the baggage of special needs. I know, it sounds harsh, but notice I didn’t say I’m tired of my *child* with special needs. I’m just tired of the therapies, the worrying, the awkward conversations with strangers about why my almost 2-year-old doesn’t walk, the specialists… all these extras. I don’t want any more “people” (as my son Cole calls all the therapists and doctors) in Dean’s life. I don’t want to go to any more conferences or lectures or lead an online forum. I just want to have my kids, my THREE boys, just be boys. I’m tired.

Crazy thing is, Dean isn’t even in school yet. How am I going to find the energy and the stamina to deal with all this craziness in the long haul? How will I learn to navigate the school system and walk that line between having high expectations for him while being realistic? How on earth will I do this?

I guess the same way I’ve done thus far. After all, when Dean was born, I was paralyzed by fear of what lie ahead, feeling totally unprepared for the job and yet already two steps behind. This time, I’m not so much scared (well, at least right now), but I’m just on burnout. I just want Dean to be a kid like anyone else, and in many ways, he is. But I’d be fooling myself if I said that was it. Someone needs to take a cosmic spatula and scoop me off the floor. Time to get back up! My children – special needs or not – need me.

Join The National Down Syndrome Society this March 21 to Celebrate World Down Syndrome Day

NDSS & The My Great Story Campaign invite you to celebrate World Down Syndrome Day.

New York, NY- March 1, 2011. On March 21, the National Down Syndrome Society (NDSS) will celebrate World Down Syndrome Day (WDSD) to honor and celebrate the accomplishments and achievements being made by people with Down syndrome.

NDSS invites you to join the global celebration of spreading messages of acceptance and inclusion for people with Down syndrome throughout your media outlet during the month of March. Below are some initiatives you can get involved in:

* The My Great Story (MGS) public awareness campaign seeks to ignite a new way of thinking about people with Down syndrome by collecting inspirational stories told by people with Down syndrome and their family members, friends, colleagues, and many others. NDSS has added a new category in honor of WDSD to promote storytelling in spirit 3-21. NDSS encourages you to post, tweet and blog about the MGS campaign, and promote reposting, retweeting and more sharing amongst your readers.

* Watch the five MGS Celebrity PSAs or post them to your media outlet’s website. These PSAs star Actor John C. McGinley, TV Hosts Meredith Vieira and Nancy O’Dell, Self-Advocate and Actor Chris Burke.

* Get the inside scoop with behind the scenes footage from the My Great Story print ad photo shoot, which features stories from Sara Wolff, The Public Speaker, and Sujeet Desai, The Traveler.

* Watch the new NDSS Milestones video starring four families who reflect on the milestones that their children have achieved and those they hope they will accomplish.

Down syndrome is the most commonly occurring genetic condition, in which the individual has a third copy of the twenty-first chromosome. World Down Syndrome Day is celebrated on the twenty-first day of the third month of the year in recognition of this fact. One in every 691 live births is a baby born with Down syndrome, and it is the most commonly occurring chromosomal condition. People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

People with Down syndrome are living longer than ever before. The life expectancy of individuals with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today. Children with Down syndrome are often fully included in social and educational settings and increasingly go on to graduate high school and attend postsecondary education programs. While placement in the workforce remains a struggle, the situation has improved and adults with Down syndrome have attained a variety of positions, bringing enthusiasm, reliability and dedication to their jobs.

About My Great Story

MGS was created pro-bono by NY based Ad Agency, Pedone. After 14 months of market analysis the Pedone team developed a campaign in an effort to shape the future for all people with Down syndrome. The online story book was developed by CT based Interactive Agency York and Chapel, who spent over 12 months developing the user friendly technology, sophisticated design and esthetics, and incorporation of the spectacular print ads shot by Zachary Scott. To date, over $5 million has been donated in national and regional ad space and services, and there have been over 150 million impressions across the country. The campaign has had placements in publications such as Allure, Fortune, Golf Digest, The New Yorker, Newsweek, Time, Vogue and Wired, among other noteworthy outlets. To learn more, visit www.ndss.org/stories.

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community. NDSS has over 350 affiliates nationwide. To learn more, visit www.ndss.org.

About World Down Syndrome Day

World Down Syndrome Day was established in 2006 by Down Syndrome International, with the goal of raising awareness and mobilizing support and recognition of the dignity, rights and well being of people with Down syndrome across the world. To learn more, visit www.ds-int.org/events/wdsd.

Quick Links:

NDSS on Facebook

My Great Story on Twitter

My Great Stories: Check out two great stories already in the collection

Story 1

Story 2

My Great Story PSAs: Watch the five 30 second PSAs starring our celebrity Ambassadors

Behind the Scenes: Watch the behind the scenes footage from the My Great Story print ad photo shoot

Milestones: Watch the new NDSS video

Down Syndrome Fact Sheet: Learn the key facts about Down syndrome

Myths and Facts: Separate fact from fiction with this helpful guide to Down syndrome

Donate: $3.21 or the amount of your choice to NDSS