Down syndrome

All posts tagged Down syndrome

What if…..

Published June 10, 2013 by megchristo

As a mother of a child with special needs, I spend a lot of time doing and worrying about things that most mothers don’t. As “normal” as we try to make our lives and experiences, our days and weeks are filled with extra doctor appointments, meetings with the schools, writing in communication notebooks for the teachers, tutoring sessions, occupational therapy, speech therapy, physical therapy, music therapy, miracle league, t ball, and other such events and combinations there of. One of the most difficult, nerve wracking events is the IEP (Individualized Education Plan) meeting with the school. No matter how wonderful the school, administrators, teachers, and staff ( and ours are all top notch!) this day is stressful and hard. Parents show up in their toughest advocacy suits of armor ready to go to war for what is best for their child. We all push, beg, plead, and demand that our children be integrated into the “typical” classroom. We have our long list of reasons why, and ideas of how we can accomplish this.

As I was leaving our IEP meeting in May, I kept thinking to myself…..what if? What if parents of Carsten’s typical peers requested or even demanded that Carsten be in their child’s class? I have heard parents say things to the opposite effect while attending activities for my oldest son, Gabe, which infuriated me. I would say things back like, “I don’t feel that way. I feel like Child X brings a different set of skills to the classroom, and I am glad she is here.” I haven’t, however, requested that Child X be put in Gabe’s class the next year. Why haven’t I? I guess I never stopped to think of the effect that doing so would have. How that would make Child X feel wanted, her parent’s feel like she is wanted, and be reassuring to the administration and teachers that we see her value in being in the classroom with her peers. I think that would have such a huge affect on inclusion, acceptance and understanding if “typical” peers’ parents did just that. My next hurdle was how to accomplish this. How do I get my generation to open their eyes to how great acceptance and inclusion is? I didn’t know the answer, and I didn’t know where to start.

As if sent by an angel, I received a private message via Facebook tonight from Carsten’s classmate’s parent. While this parent and I have exchanged pleasantries in the past, we aren’t “friends” (however I hope to become friends:)). In fact I don’t even think she is aware of my advocacy work or my work at GiGi’s Playhouse. She just knows that her son likes my son, and he considers Carsten a good friend. Carsten feels the same about her son. Now for the AMAZING part….she sent a note to the principal requesting that her son be put in MY son’s class!!!!!! Please someone come pick me up off of the floor, and wipe the tears from my eyes. This mom and her son see what a positive aspect Carsten brings to the classroom, and wants her son to be WITH CARSTEN. She didn’t just talk about it, or mention how sweet Carsten is. She wrote a note to the principal requesting CARSTEN! Can you feel my heart swell in admiration for this woman who knew what to do even when I didn’t…..without me even asking?!?!?!? I think the angels are singing!

What would happen if the rest of us followed her example? What if we wrote a letter or scheduled a meeting to request our child be put in a classroom with a child with special needs? Can you imagine the movement that would occur across this country? Can you imagine what a step forward this would be for all of us?!? I am full blown crying now! Instead of the parents of children with special needs asking for inclusion….everyone else was asking for us. What a relief this would be for the parent’s too! We could use one less battle to fight….one less closed mind to try to open to the beauty our children bring to the world, our communities, and our schools.

Let’s do it people!!! Write your school principal and request it! When you do, please leave a comment below! I know I will be sending a letter tonight requesting that Gabe be put in a classroom with Child X! Let’s see what kind of change we can make from a good old fashioned social movement. It will only take 5 minutes of your time, but could change our world for the better…forever! Who is with me?!?!

Image

The Day That Changed My Life

Published March 25, 2013 by megchristo

Today was my first day back to work.  The time to bond with the girls seemed to fly by!  Last night I could hardly sleep.  I was tossing and turning worried…panicked even on how the girls would do with me leaving for work everyday.  How would this effect them?  I was worried the most about Elle.  How would my work life interfere with the progress we have made on her abandonment fears?  Would we take 10 huge steps backwards the moment I walked out that door?  When I left the house, I pulled alongside the curb a few blocks down the street and balled.  I mean ugly cried.  I allowed myself to do that for about 5 minutes. I then fixed the makeup, and was off to the races.

Now, don’t get me wrong.  I really like my job.  I love my customers, and I feel like a truly make a difference.  But have you ever had one of those scotch tape kind of days?  You are fairly put together on the outside, but if anyone looked close enough they would see you were being held together by scotch tape at the seams.  At any moment the scotch tape might give, and your heart may come popping out.  Today was one of those days for me.  Luckily I made it through with my heart still pumping in my chest!;)

On days like this I remember so clearly the day that changed my life and my perspective.

This happened to me on May 31st, 2006 at 10:30 am.  Matt was sitting on the left hand side of my hospital bed at the University of Missouri.  Carsten was just a little over 10 hours old, and we couldn’t stop staring at our perfect baby.  Then I heard a knock on my door, and 8 doctors that I had never seen before came filing in.  They lined up in an “L” shape around my room.  From my days as a hospital sales rep, I knew that 2 of them were attending physicians, 4 were residents, and 2 were med students by the length of their white coats or lack there of.  I also knew they weren’t there to say “Good morning.”  The first NICU attending physician opened by saying, “Has anyone expressed the concerns we have about your baby?”

I quickly answered, “No.” 

She followed by saying, “Your baby has several characteristics of Down syndrome.”  Her eyes then filled with tears.

Time stopped for a moment.  I then glanced down the line of doctors till I got to the next attending.  I asked her, “What does this mean?”

She said, “Well, if your baby does have Down syndrome he will have mental retardation.”  The rest of the scary medical things she rattled off I couldn’t even keep up with.

I remember saying with tears in my eyes and a lump in my throat, “Can we fix it?”

I don’t remember how they responded to this illogical question because I then looked down at Carsten curled up in my arms.  At that moment he looked up at me with those beautiful, almond shaped eyes, and for the first time I heard his “voice.”  His heart spoke to my heart and he said, “Mommy they aren’t here to fix me.  I am here to fix you.”

For six…almost seven years…Carsten has gone through the difficult job of fixing me.  He is my beacon of truth, honesty, love, and all things good in this world.  Everyday he shows me how much the human spirit can endure and triumph if one just puts their mind to it.  I am not sure of the person or mother I would be today if Carsten hadn’t been born with an extra chromosome.  I don’t think the person I am today would approve of her though.  I am so thankful to be exactly where I am today.  I am thankful for all of my children!  They all have helped shape the person I am, and only will help push to make me a better person tomorrow.  Their job will never be done!  So when I think that my scotch tape may blow, or that the girls will retreat into the depths of their despair while they were waiting for Matt and I to find them, I remember how silly I must be being.  

After all how could all of the love, security, and safety of our family be erased by a working day?  When I returned home and saw the pure joy of my return on Elle, Mae, Griffin, Carsten, and Gabe’s faces, I knew it couldn’t be erased.  Somehow my love surely lingers around them like protective cloaks even when I am not physically next to them.  Besides nothing beats all of the hugs, kisses, and exuberant “MOM!” screams I hear when I walk through the door.  

Hopefully tomorrow when I leave for work, I will feel like I am held together with a substance more sturdy than scotch tape….perhaps duct tape will do! 🙂