Saturday, October 23, 2010

Expectations, Part II- Jill's Story

I recently connected with a group of special Moms.  All are Mothers to a child (or children) who have special needs.  I've found community with parents of children with Down syndrome, but am also finding a larger network of support through others who don't have the same circumstances but understand the change in expectations just the same.  Since the dynamic of Expectations has been on my mind, I've asked a couple of friends with different circumstances to share their experience and how their Expectations have changed. So, I'll be sharing a couple of posts by some new friends in a blog series I'm titling: Expectations. (I know....can you HANDLE the originality of the series name? Genius. :)  But, since there is a lot to be said on Expectations, I decided I didn't need to fancy it up at all...)

This is Jill's Story.

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My name is Jill, and I have to give a great thanks to Jen for having me guest post on her blog today! I am fairly new to blogging, but am loving it. Among other things, I am finding it as a great way to let out all kinds of feelings about my son Kekito’s Autism and how it affects our lives.
Jen and I decided to broach the subject of “expectations”. We really expect so much, don’t we? I feel like a large majority of our population feel entitled to so many things; we seem to just expect things to “go right” in our lives. “Suburban home, 2.5 beautiful children, a Labrador retriever, etc…” ;)
At some point I think everyone has some sort of wake up call. I think I’ve had a few in life thus far. My first big one was in high school. I won’t get into details, but I learned the value of good friends & loyalty. There have been many more adjustments to my expectations along the way; but the biggest came with my first son, Kekito. When he was around 10-11 months old, I began to notice the first signs of Autism.
When I was younger I never imagined having a child with special needs. It’s the “it wouldn’t happen to me” attitude. Why do we think that? Is it a defense mechanism? Or on a deep level do we think that there must be some greater cosmic reason for it to happen to other people? And I apply that question to all the things we think that way about: getting hit by a bus, a plane crash, the lottery even! …“It won’t happen to me”. Knowing what I know now, I know that can’t be true. It’s just life. Plain and simple, everything has to happen to someone. At first I thought, “Why me?!”, then one day I realized, “Why not me?!”. If 1 in 110 children are going to have Autism these days, seriously, someone has to live with it. So why not me?
I read a beautiful poem once that said that God gave special needs babies to the special mothers who could love them, nurture them, empathize with them, be patient and kind with them. I don’t know if this is true. I often think of it, and wish & hope that it’s true. Because if God thought I was special enough to have Kekito, then I know I can make it through all the rough times. It’s in those rough times I most remember it. It brought tears to my eyes, because I had always expected to be a great mother. Easily. Even though I know that I bend over backwards and turn myself inside out for my son, so many days I don’t feel like the great mother I expected to be. I think the problem is I expected to have infinite patience for my children. Then when I don’t, and I get annoyed to the brink of insanity I feel overwhelmed with guilt. I realize that on many days, it must seem like hell in Kekito’s head. I have ADD and a few sensory issues myself, and it’s a nightmare some days. Seeing how many problems Kekito has and knowing that he doesn’t even have the ability to fully understand what’s going on… it makes my heart break and streams trickle down my face. It aches to know that many days he is so very likely, confused, frightened, or just not feeling well; and there’s nothing I can do to explain that it’s only for a little while.
I expected Autism to be terrible. But I’ve learned that it’s really not so bad. Maybe on some days. Maybe in certain aspects of life. But overall, I actually feel really blessed by Autism. It gave me a stronger bond to Kekito than I think I would have had otherwise. It really made us a team. Everyday we go into battle together. There’s a little friendly fire here and there, but it’s all good at the end of the day. I am so much more patient than I ever was before. I never knew I could hear the same word repeated to me ALL day and still be able to feign excitement for him on the thousandth go-around. “Moon. Yeah, that’s a really fantastic word Kekito…. Yes, moon, unh huh, moon. Good job”… Awesomeness. I just try to remind myself how glad I am that he is talking at all!!! I never expected that it would finally lead to me to what I want to do in my life. I never thought I’d want to work for Early Intervention, but now it’s the only thing I want to do.
Life now is so different than what I thought it would be when I decided to start my own family. There are things I’d change if I could. But I don’t think Autism is one of them. I know that sounds strange. And some days, I’ll want to take that back. I can guarantee it! Overall though, I think it has made me grow immensely as a mother, and a person. It’s taught me not to expect anything, but rather to be grateful for everything little.
If you would like to read more about my family, as well as our Autism experience, please visit me at: http://www.sublimebynature.blogspot.com/

~Jill

Thursday, October 21, 2010

Expectations

Today I'm feeling a little weepy.  I am trying to adjust my expectations, put energy where it's not wasted and minimize the extras so I don't lose my mind.  I'll start with Expectations.  Getting a prenatal diagnosis that my baby has Down syndrome was a HUGE adjustment in Expectations. And those expectations are continually having to be adjusted.  Let me just say that controlling my expectations is already a tough area in my life that I have been working on, even before Elijah was conceived.  God just decided to up the ante a little.  Firstly, I should be clear: what I'm grappling with has little to nothing to do with how Elijah is doing.  He is doing all he can, and in my mind he is a champion and a warrior who inspires me daily. The grappling all happens in my own head.

When I first received the news that Elijah has Down syndrome, I assumed the worst. I thought of institutionalized kids; slack, blank faces who comprehend little to nothing; and physical features that set them vastly apart from their peers.  My expectations for what my child would look like and what my child would be capable of were devastated.  Then, I started talking to and meeting ACTUAL, real people. People who have children with Down syndrome.  It painted a significantly different picture.   The children I met were part of loving, active families, with faces full of joy and wonder, who did look a little different than the average child...but who were adorable and beautiful just the same! I started to realize that, Wow.This isn't going to be quite as different and scary as I imagined it would be.  Where did my preconceived notions even come from?  Certainly not from any real knowledge based on people that I personally knew! So what formed this sad expectation I had?... 

Now that my initial expectations are adjusted to fit a more realistic picture of what Down syndrome looks like, I work on controlling my expectations about how fast Elijah will learn.  I am starting to understand that he will learn, he will develop, but it will be at a pace that is different from what my firstborn did.  When he's 30, will it matter if he walked at 12 months or at 24 months? No. It really won't.   

My other struggle, which is especially frustrating, is in the area of State and Government help.  There are wonderful programs set up to help us, but I feel like they are designed purposely to have you jump through impossible hoops so that you'll give up, go away, and leave them clinging to the dwindling funds they have left. So, since Elijah is doing relatively well, the hoops get more complicated.  I feel that I have to down play his improvements to have anyone take me seriously!  I just want to shout, He has Down syndrome, people!  It's not going to just "go away"!  Elijah turned 6 months old today.  I should be happy, but my happiness is clouded by the System. At this point, we have no therapies in place to help us work with Elijah.  I'm makin' this shit up on my own and hoping I'm not creating some bad habits that some therapist down the line is going to tell me I've added to.  So I struggle not to second guess myself.  I call. I rant. I leave messages. I kill with kindness.  I convey concern.  I advocate.  It's all I can do, but sometimes it just doesn't feel like it's working.  And I have no control over it all.  That's right about what it boils down to, isn't it? Control. Control and Expectations.  I expect to be able to help my son, but I have no control over whether I will or not. I'm finding it's much more emotional to feel helpless when you have been put in charge of helping a baby survive on this planet.  When it's just about me, and the expectations and control issues are about myself...well, that seems pretty inconsequential right now.   I'm doing all I can. Literally. And I'm trying to give myself a break, give Elijah a break and remember that things are going to work out...but they'll work out the way God planned, not the way I planned. 

When I can do it (which I'll admit is not often enough), letting go of the Expectations and Control is...well, FREEING.  My claw-like grip from how I think things should go, relaxes.  In it it's place is Surrender. Ah, Surrender. When I have visited you in the past, you have calmed my mind and my fears.  Standing face to face everyday with the expectations I have to redefine, forces me to take a good long look at my Ego and how that fits into this picture as well.  It's humbling.  ....There. I said it.  I have an Ego.  It wants some things to be a certain way. But that "way" might not be in the big picture. So, I re-adjust.  In some ways, it's kind of amazing.  I just might have gone through my life expecting that things will always go the way I want them to.  What's happened instead is that I don't know what's next.  It's an adventure. I have no doubt that my Expectations about life, and milestones, and what therapies we should be receiving will get the best of me now and again.  Like I said, God upped the ante.  And some days, like today, will cause me to be a little weepy about it.  But I'm okay with that.  My expectations are high because I want to be the best possible person I can be.  I want to be the best possible Mother to my children.  I want my children to have the best possible life experiences.  My crazy expectations come from a really positive place.  That's not all bad.  The person who ultimately suffers the most when I let these expectations take over my life, is me.  I will aim to be the best possible person, Mother and life-experience creator for my children, but I also need to know when to Let Go.  And I'm working on that balance...


Happy half-birthday to my littlest sweetie!!  Here are some pictures from this weekend, while a friend was holding him.  (Try not to be distracted by his pants being pulled clear up to his chest.  I promise not to let him go to high school like that...) :)
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Saturday, October 16, 2010

I love you too

It finally happened. And it was worth the wait. My three year old took my face in both of his hands, looked into my eyes and said, "I love you too." Without being asked. No prompting. On his own. In his own time. I've been wanting to hear "I love you" for so long, but up until now Christian only said it when we asked him to.  I never doubted he felt it, but oh how I wanted to hear it..

Sometimes you just need to hear, I love you.   I often wonder if I say it enough.  I say it to Christian and Elijah over and over everyday.  I'm not stingy with the I love you to even some of my closest girlfriends. But do I say it to Charles enough?  Does he know that I love him for ALL that he is? Exactly as he is?  Sometimes I think I've failed to say it enough. We're coming off of a bit of a spat. A huge theme within it is that Charles isn't feeling loved and supported. That really, really bums me out because there seems to be a huge disconnect from what I'm feeling to what he's hearing from me.  I'm not yet sure how to find the balance of avoiding feeling like an insincere cheerleader and making the most of the moments where he will actually hear the love and support I have for him.  It seems I have often gotten this wrong.  Perhaps this is a common relationship snafu?

Feeling appreciated. I know this a topic broached time and again within Mommy circles of never feeling fully appreciated for all that they do.  After my spat with Charles, I'm betting that if there were such a thing as Daddy circles (like the unicorn, they may exist, I've just never actually seen one), they might be complaining of not feeling appreciated too.  So, inspired by my adorable 3 year old and the meaningful way in which he finally said, I love you, here are my top 5 reasons that Charles is my #1 guy:

5. He works so hard to make life for our family work.  It is forefront in his mind.  He has many, many gifts and while work has not been as fruitful and fulfilling for him recently, I believe that once other employers/projects/opportunities see how much of an asset he would be....he will FLY.
4. He is a GOOD Father.  He is present (both physically and emotionally), loving but firm, attentive, fun and his boys look up to him already. As well they should.
3.  He is a communicator.  While he and I may still go round and round and feel that our communication skills are severely lacking...he is a willing communicator.  He doesn't clam up and say, "Whatever." He works through it and tries to help get us to a place of peace (even if it is occasionally to agree to disagree.)
2. He values me and lets me know it. He'll remark that he thinks I look pretty or that I've been doing great with the boys or inspiring my students.  I hope to find more ways to do the same for him.
1.  He is a lovable guy!  He is a smart, witty, fun, complex, unique, GOOD man.

So, Babe...if you're reading this, I LOVE YOU. Just as you are. I won't be perfect at showing it all of the time, but I will be feeling it.  If you aren't reading this... even better, because you know what? I should shout it from the rooftops anyway.

Life is complicated. Life, sometimes tries to weigh us down with work obligations, over-scheduling, overdue bills, and physical exhaustion.  And when we let it, it can consume us, terrify us and leave us short-tempered and unkind.  I am not perfect and I am not immune to these things, but I am a perseverer. (Yes, I'm well aware that I am turning a word that is normally a verb into a noun, but it is pretty appropriate.)  I am a Perseverer.  I think this definition is a trait that I can claim(and take the liberty of turning it into a noun.):

Persevere-
1. to persist in anything undertaken; maintain a purpose in spite of difficulty, obstacles, or discouragement; continue steadfastly.

2. to persist in speech, interrogation, argument, etc.; insist. (Yup. While this may not be Charles' favorite quality of mine...it is true.)
3. to bolster, sustain, or uphold

I had some pretty powerful role models in the department of love and relationships.  My Grandfather and Grandmother (my Dad's parents) were married over 60 years.  My Grandmother told me that every. single. day. my Grandfather told her that he loved her so much and that she was his world.  *Miss you, Paw Paw*  My own parents, who I got to live with and see more closely than my Grandparents, have a great balance.  It is truly NOT all roses and butterflies, but you persevere. You make that commitment and along the way you love each other, in the best way you can. I saw my parents argue (still do), but I also see them grab hands and enjoy the journey together. That is what I hope for my children.  That they can see that Charles and I are far from perfect, but we love each other and we love them.  We are a team. A family.

So... to my family: both immediate and extended, I say,  I love you.  And whenever you want to say it back, it will be sweet.  Because whether you say it or not, your actions shout, I LOVE YOU, TOO.

Friday, October 15, 2010

On Finding Support

The blogging world is wide and amazing. When I received the diagnosis that my baby boy had Down syndrome, I turned to the internet, because I didn't know a single soul who had been through what I was going through.  Along the way, I've connected with many women...Mothers...who know my struggles because they have been there too. Because they have a child with Special Needs.  I asked a new friend, Tara, to share her experience as a Guest blogger on my site, and I am excited to share her story with you.  Without further ado...


How I Found Support and a Light at the End of the Tunnel
Before my son Carter was born I pretty much knew nothing about prematurity. I now feel like maybe I was living inside some kind of pregnancy bubble. I remember when we bought Carter’s car seat and I had reached the magical 24th week I made a comment that he could be born anytime because we had the car seat and were all ready for him. I never gave a second thought to everything that comes along with having a baby early, but I learned very quickly.

Carter was born at 29 weeks gestation and with his birth came so many new experiences, emotions, and worries. It was all foreign territory for me. I don’t directly know anyone who has had a premature baby so I felt lost with no one around who really knew what I was feeling. Many friends provided support for us. Some had stories of their own about being a premature infant themselves, or knowing someone else who had had a preemie. It did bring us some comfort knowing that all of their experiences had happy endings, but I was still left with a storm of emotions inside and no one who really understood.

A couple days after Carter was born I logged onto a website called The Bump that I had frequently visited throughout my pregnancy. They have so many specialized message boards, including one for parents of preemies. At first I stayed away from that message board. I didn’t want to read anything there because I just didn’t want to know too much about the rollercoaster ride we had just gotten on. I didn’t want to know what could happen to Carter. When I did start reading I found that all of those women had been through pretty much the same events and felt the same feelings that I was now feeling. I could “talk” to them using the “NICU language” I was learning and they knew exactly what I was talking about! Not only did they know, but their little ones had gone through the same things that Carter was going through.

Our NICU journey eventually came to an end and Carter came home. Only a couple weeks later he developed acid reflux. This was just the beginning of the issues he would have with eating. Little by little he got worse and will now only eat in his sleep. He has developed an oral aversion due to the pain of reflux and/or the inability to coordinate sucking, swallowing, and breathing. He has pretty much learned that it’s uncomfortable to eat and that he doesn’t have to, so he just won’t. Again, I felt like no one knew how I felt. No, I KNEW no one knew how I felt. Being at home all day with your little baby who won’t eat is not a fun experience. It’s 24/7 stress about how you’re going to get your baby to grow, and it seemed to be slowly consuming my life. I could go on and on about the thoughts and feelings and worries and crazy turns our life has taken due to this. But then we’d be here all day!

Then I found a message board on Babycenter called Reflux Rebel Refusers. These ladies are wonderful. I am still in awe of the fact that there are so many other moms out there who are going through the same thing. Oral aversion, again, was something I knew nothing about. Then, one day, I’m part of the club! It’s so great to be able to vent about all the frustrations and have someone say that they know what I mean because they’ve gone through it, or are currently going through it.

Without these two wonderful groups of women I’m convinced I would be in a padded cell right now! Although I have a great support system in real life, no one had been through any of this. No one truly knows what I feel. Even though knowing these other women doesn’t change anything that we’re going through, doesn’t necessarily make any of the stress and pain go away, it brings great comfort to know that I’m not alone. Other mothers have struggled with having a child in the NICU and having a child with an oral aversion, and they survived. Their babies survived, and have gotten better. There is hope, there is a light at the end of this dark tunnel that I sometimes feel as though I’ll be in forever. We still struggle with these issues, but just take one day at a time and know that someday it will be a part of the past.

So going forward in this journey of motherhood, I take great comfort in the fact that I now have my blog and am able to connect with even more mothers all over the country and even the world. After all, Carter is only nine months old and has already thrown a lot at me! I can only imagine what else he’ll come up with! But, no matter what, I know that I’ll find that family member, friend, blogger, or message board where SOMEONE can relate to me and help get me through.

- Tara

Three P’s in a Pod

Thursday, October 14, 2010

My Country Road

Today I feel relieved.  For the past 3 months I have been obsessing about something that was brought to my attention regarding my oldest son, Christian.  It started with the Regional Center Coordinator who came to my home to evaluate my baby, Elijah:  Christian ran in from playing out in the backyard, saw there was someone he doesn't know (which lately seems to turn on the "mute button" for him), muttered something about playing with the water and ran back outside.  The RC coordinator said, "Have you ever had your son Christian evaluated for Speech? By three years of age, he should be much clearer than he is."  It was like a kick to the stomach for me.  I thought, There can't be something wrong with Christian...There just can't be!  Followed quickly by thoughts of, Did I miss something because I've been so focused on Elijah's diagnosis of Down syndrome?  I had never before that moment thought that something might be askew with Christian's speech.  Then I made the mistake of talking to Christian's prechool (Mommy and Me) teacher.  She had already wondered if he had a speech issue.  But, I always brushed it off because I saw how he was in that class...he hardly ever talked.  And since he never talked, she didn't really get a chance to see how he does it.  Of course, at home, he talks NON-STOP.  About anything. About everything.  The preschool teacher brought up all kinds of possible issues: things ranging from simple speech impediments to complex psychological processing issues.  I started to panic.  We had one speech evaluation that got cancelled on us and it set back the wheels in motion for a few months.  In that time, I've seen a huge improvement in Christian's speech and language skills and was beginning to believe that this was not going to be an issue.

Yesterday, after months of anticipation, we got in for a speech and language screening for Christian.  I had myself all wired up on the insides before we left for our appointment.  I think I was gearing myself up for the worst.  I didn't want to be caught off-guard again.  I was thinking crazy things like, Great, let's go find out how Mommy screwed up this kid too. Maybe I was too selfish in trying to have my own life and career, and waited too long- leaving my eggs to turn bad and thus turn out children who will have to overcome huge obstacles in life...  Yeah. I went there. Not good. 

We arrive at the speech pathologist's office and she lures Christian into her office "to talk" with a Thomas the tank engine toy and starts asking him all kinds of questions.  I was worried that he would play the "mute" game with her too, but she was amazing.  Her tone was fun and upbeat and I could hear him talking away with her.  She asked, "What is your favorite food Christian?  I like pizza."  Christian said, "I like Ravioli."  (I chuckled. Yes, he does really love ravioli and eats it almost everytime he goes to his Nana's house.) She would ask him to say a sentence and he repeated it with enough clarity that I could hear and understand it from the waiting room.  I was glad that at least he was talking and being himself so that she could properly assess him!  She brought him out and said, "Well, this boy is doing beautifully.  He has absolutely NO issues whatsoever!  His sentence structure is beautiful- in fact above average for his age.  He makes some sound mistakes, like w's for l's and t's for ch, but it is all age appropriate.  You're doing a great job with him, Mommy and there is nothing to worry about."  I nearly collapsed from relief.  I really, really REALLY needed to hear some good news about one of my children.  It's been awhile since I haven't been worried about one of my kids, and when I think back to the news from the speech therapist yesterday, I have to remind myself that it wasn't a dream.  Christian really is okay.  (Not that needing some speech therapy isn't okay.  It's just the thought of having multiple therapies for Elijah and then adding therapy for Christian just seemed like a little more than I can handle right now. )

And today, I got a wonderful gift: the elusive Christian cat-nap...caught on film:

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Life with my boys has been pretty full-force lately.  Charles has been in and out of town for work in San Fransisco and it leaves me as full, Full-time Mom, business owner (with 4 major events around the corner), and ballet teacher.  At every nap and night time I am trying to get work done, and feeling like I'm just failing across the board- not being a good Mommy and not being the kind of attention-to-detail event designer that I know I am.  (Ballet is my one release, but by the time I finish teaching 6 classes, I'm so wiped out physically, that trying to get anything else done, is impossible.)  I think I have underestimated just how much my hubby does for me and our boys. (I said it, Babe.  You will always have this post to refer back to and say, "Look you said it!")  He is great about making sure that I get a little "me" time, and I am better at everything when I have time to decompress and do fun stuff (or nothing at all).  Lately, I look longingly at picturesque scenes in Southern Living or Sunset magazine...thinking about what it would be like to walk on an empty road in the dense fog, surrounded by brightly colored, leafy trees.  I would have on some cozy boots, not meant for hiking, but strong enough to keep me comfortable and warm. I'd be bundled into a thick wool sweater and hat and see my breath in the air.  I'd hear only the sound of my own footsteps.  I would walk for an hour...uninteruppted, knowing that everyone I loved was safe and happy and warm and waiting for me at the charming log cabin at the end of the small path off the main road...with hot chocolate to tame the chill in my bones...  Sigh.  *I feel like I just had a small moment of that, by just dreaming it.* A girl can dream, right?  I'm thinking that soon I will need some of that.  Not just dreaming, but actual me-and-nature alone time.  I used to hike weekly and loved it.  It just takes on a whole new meaning now with a preschooler and baby to tote.  Not quite the same stress-buster that it was as a single woman with her dog.   

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So, while we don't have the weather, the empty road OR the colored trees for me to de-stress to,  I did have a beautiful moment with my boys this afternoon.  We spread a blanket in the backyard, under the market umbrella to protect us from the beating down sun, and brought cookies and a coffee for me (needed that caffeine burst) outside to enjoy.  I laid Elijah on the blanket in front of me, grabbed onto his hands and assisted him into a full stand (in which he held a good 50% of his own weight) and sang, "Sooooo Big!!" He laughed and laughed at his little achievement, and Christian laughed along with him, shouting, "My turn! My turn!" So, I put him in my lap (quite a feat) grabbed his hands and when he stood up, said with just as much enthusiasm, "Sooooo Big!"  ...And he laughed and laughed too.

An empty country road sounds pretty great right now, but the sound of my boys laughing IS my country road. My own quirky, busy, loud, demanding... country road.

Friday, October 8, 2010

The Underdogs

I've been thinking a lot about Privileged vs. Challenged in the past few days... I can admit that as a middle class, white woman, who is not the ugliest chick on the block that certain things came easier to me.  In fact, if you ask my hubby (White, middle class male) he might even say, I've been more privileged than him.  He is, of course talking about the very important and heavy topics such as: Can I easily get into a nightclub? and might I get out of more traffic tickets?...Although, I can categorically say that I have NOT gotten out of any tickets in my lifetime, as my trip to traffic court this morning proves. On nightclubs...well, yes...I've had my fair share of velvet ropes lifted and have been escorted past the long line collecting on the street in front.  (I no longer attempt this, however, because a) I have no interest, and b) I'm afraid that I might live out the club scene from the movie "Knocked Up", where the older sister gets asked to take a place in line (because she looks too old).  I digress... I have not, personally, been dealt such a tough hand in life.

My baby boy, Elijah, has been dealt a different hand...a hand that will be more challenging.  It will take him longer to develop his gross motor skills, to learn and memorize, to read and write, because of the way his extra chromosome interferes with his development.   But, you know what?  He has a strong will!  He wants to sit up and roll over and pull himself to a stand- at just 5 months of age- his face, eyes and laughs communicate how much he loves working on these tasks.  By contrast, most typically developing babies don't even have to think about what it will take to sit up straight (though it will take them a little time to do this on their own.)  Everyone loves an underdog, though...right? Think: Rocky Balboa (Too-old, small time boxer who makes it big in the Heavyweight ring), Braveheart (A Scottish commoner whose brother, father and childhood sweetheart have been killed by the English. He unites the Scottish against the English, who outnumber them in bodies and supplies.), Hoosiers (the small town basketball team that becomes a championship contender) and Seabiscuit (the undersized, depression-era racehorse who was victorious time and again.)  Everyone loves an underdog.  But, the underdog is often the one that, (before greatness is achieved) is belittled and ridiculed.  It's sad, but true.  When I think about our society and how easily we have joked about the mentally and physically challenged, my heart breaks.  Why IS that?  You would think that even people who feel small and insecure wouldn't bother picking on someone with Special Needs, but they do. 

Humor surrounding Special Needs has become commonplace. I was teaching ballet the other night and some of the girls started joking about one of them being "Special". Now, mind you, this girl is special, but not with special needs.  She is typical and talented and pretty and so sweet.  But the joke started: "You're "Special".  No...no! You're "Special Ed."  I put a stop to it, while knowing that they really did not mean it to be degrading to anyone who has special needs (some of their own family members have special needs.)  But, again, it is commonplace.  No one thinks about what it really means.  Only it means something different to me know.  I said, "Hey...sorry, guys, I can't allow the special needs jokes in my class, considering that someday my son Elijah will be a part of the special ed program."  They immediately 'oohed and ahhed' and "took it back" because they weren't really trying to put anyone with challenges down.  However, this is the problem.  Somewhere along the way, we all forgot that these jokes are at someone's expense.  Someone who really IS in the special ed class.  Someone who really has to work 2, 3 or 4 times as hard as everyone else to do the simple things. How did we let it get that way?...

So, as uncomfortable as it will be at times,  I will say (or at least try to say with grace and tact) what should be said: The jokes are at the cost of real people's feelings. Saying, "I'm so retarded" and hitting your hand to your chest is ABOUT someone. Just because you're trying to jokingly degrade yourself doesn't take away the fact that this is how some people live life: delayed in learning and unable to control some of their body movements. I think they've got it hard enough- can't the schoolgirls and schoolboys (both young and old) give it a rest? 

Tonight, as I was writing this post, I clicked over to Facebook...because I'm addicted...(Hi, my name is Jennifer and I'm a Facebooker.) An old dance friend sent me a link that got me all weepy and on my soap want-to-support-as-many-causes-as-possible box.  Considering that I am a former professional dancer, and now dance teacher, this probably gets me in the heart more than some, but take a look:




This project is working on getting funding and while I know I'm probably going to have endless projects that I want to help get funding, I really think this one is especially touching. If you're moved to donate, great. (I have NO affiliation with this production, so this doesn't benefit me in any way...other than it will draw attention to all of the things (including dance) that people with Down syndrome participate in.)

Peace out.


I know...I'm not sure who I was being there...it just felt like a "Peace out" moment. :)




If you're reading this blog around it's published date, then you are listening to the theme song from Rocky.  I thought it was fitting for today's post. 
That and it really, really makes me giggle. Hard.

Sunday, October 3, 2010

On Purpose

I signed on many months ago, while I was still pregnant with Elijah, to be part of a book. I chose to be photographed for the book, and to put a face to the many expectant Mothers who find out that the baby they are carrying has Down syndrome.  I decided to put it all out there- the fear, the nerves, the confusion...the Love, because I believe that these things will be important and sentimental keepsakes for my boys.  Keepsakes that say that their Mother is not perfect or without conflict, but show that I Loved them. In the face of fear, I Loved Elijah.

The book was released last month and last night was the Los Angeles book release party for this book, called, "I'm Down With You".  It was a lovely, simple affair held at a furniture design studio in LA, where people involved in the making of the book gathered to celebrate.  Most importantly, it was the place where the models for the book were on hand to sign copies and get their moment of glory.  I was quite out-of-place as a model in this book, because the subjects were all people-babies, children, teens and adults- with Down syndrome. We took a group photo at the party and then everyone commenced on having their books signed.  The models were so excited to sign books and to be a celebrity for the evening.  It was so heart warming that you saw nothing but ear to ear smiles or eyes brimming with tears and pride that evening.  I had both.  I did not bring Elijah with me, as it was really too late for him to be out and about, but brought a picture to show off my handsome little man to those who had only met me (including the photographer) while I was pregnant.  I was happy to share the news of his birth, his sweet nature and the peace that I have felt since he was delivered to our family.  I also got to see one of my favorites from the photo shoot day.  Her name is Katelyn and I fell in love with her during the shoot.  She was nearly 7 at the time of the shoot and just as adorable as could be.  She has a zest for life, an infectious smile and is bright and smart.  I remember feeling...well, relieved, really. I was relieved because she was almost everything you would ever want your child to be.  Maybe she won't become an astronaut or a ballerina, but I have no doubt that she'll "become" something very important to a lot of people.  In fact, she doesn't need to become it, she already is.  She is an advocate for Love, for Joy, and a remover of fear- just by Being.  I have thought so many times about Katelyn and her Mom, Kelly.  Kelly made an equally important impression on me. She has a radiant smile (no wonder Katelyn has the same) and just a very serene, confident air about her.  There are no excuses being made, no chip on her shoulder... just Grace. It was less about what she said, though I clung to every word, but more about how she acted.  She acted like she was Fine.  In fact, better than Fine. Happy.  So, I knew I would be fine too. Probably even Happy. And I am.

I think we have a tendency to define ourselves by our careers and our "acts".  When we talk about what our Purpose in life is, it seems people automatically talk about what their dreams for their careers are...how they will make an impact on society.  Sometimes I think those things play into a person's Purpose, but sometimes they have nothing at all to do with it...  I think that my Purpose has to do with me being a light through which people can see God's Love.  I've spent my life doing things I love for work- things that won't go down in history books, but will live on in the hearts of people. I don't think these things, while they are worthwhile, are my Purpose.  But they are part of the tapestry of events in life that mold me into achieving my Purpose.  And I know that Katelyn and my little Elijah have a Purpose too. Their Purpose is just as valid as the winners of the Nobel Peace prize. It may or may not go down in history, but is important none-the-less.

I still have fears...many fears about what Elijah's life in the future will be.  I've heard people say that their child (aged 8-20) can't yet read or write, and it stings.  My heart drops when I hear this because my experience with reading and writing has been magical.  Books create a world that I might never get to see first hand, invent characters that are so real and relatable that you think they truly exist, and transport you from an ordinary day into a world of adventure.  Writing unlocks the hesitations of my mind.  I can write, like today, not even fully aware of what I'm feeling, but here it is. If I could only write my communicative responses-I would be wittier, smarter, and always have the perfect comeback. And I'd never overreact. I'd be able to keep my cool at all times.  Reading and writing is a gift and I hope that it's a gift Elijah gets to enjoy.  Meanwhile I will do everything I can to help inspire a passion for books and writing.  Although, the models for the "I'm Down With You" book mostly just signed their names, my favorite little model, Katelyn, signed what is truly most important:

I am Happy.
Katelyn

Thank you Katelyn. 


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This is the photo that Jagatjoti S. Khalsa, the photographer & inspired author of this book, chose.  "I'm Down With You" is available on Amazon or you can click here to order a copy.  It is a beautiful coffee table book that brings new light and understanding to people with Down syndrome- by capturing their true spirit through photography.

Friday, October 1, 2010

Hello World!

Elijah got his glasses yesterday, and when we put them on him he looked around as if to say, "Why, Hello World!"  I think he looks pretty darn adorable, although I know I'm about the most biased person possible.  So far, so good...he hasn't even tried to take them off!  Without further ado....check out his new specs!

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That's my baby boy...taking whatever life gives him and smiling through it!
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