[blindkid] FW: [All Access Pass to Jack] Life Challenged Me

Marie empwrn at bellsouth.net
Thu Dec 10 14:36:49 UTC 2009


See http://allaccesspasstojack.blogspot.com/2009/12/life-challenged-me.html
for one of the hardest things I've ever written.

 

Marie (mother of Jack, 4 yrs old with Apert Syndrome)
http://www.allaccesspasstojack.blogspot.com
Learn more about Apert Syndrome
http://www.thecraniofacialcenter.org/apert.html
Get information and support at Teeter's page
http://www.apert.org

-----Original Message-----
From: Marie 

 

Sometimes life really challenges what you believe. A good faceful of life
can hurt A LOT. But it also makes you think really hard about what you truly
believe deep in your heart. 

I recently re-iterated how we feel about the genuine curiosity and sometimes
embarrassing (for their parents)comments
<http://allaccesspasstojack.blogspot.com/2007/07/what-to-say.html>  and
questions
<http://allaccesspasstojack.blogspot.com/2009/07/really-we-mean-it-let-your-
kids-comment.html>  of other children when meeting Jack for the first time.
I told here
<http://allaccesspasstojack.blogspot.com/2009/12/what-is-apert-syndrome-how-
do-i-explain.html>  and in my guest
<http://www.dustbunnyhostage.com/2009/12/id-like-for-you-to-meet-marie-and-j
ack.html>  post how we explain Apert syndrome to other children.

Recently, we spent a few days surrounded by lots and lots of people we don't
know. Those are the times when we get the most curiosity (obviously). We had
the full spectrum of reactions. 

Some kids did not even seem to register Jack's obvious differences. They
just played on alongside and with Jack. Some kids asked a couple of
questions and then resumed playing alongside and with Jack. 

Then there were just a few kids who would not get anywhere near Jack even
after I tried to introduce them. 

And, heartbreakingly, there were the kids that (there's just no other way to
say this) were mean and hateful. The mean kids called Jack a monster and
told other kids not to play with him and to run from him.

I'm not gonna lie. It hurt. It hurt real bad. I did not react well. I
withdrew inward. I could not react for fear of the pain inside me jumping
out and injuring those little people. And it was killing me that the mean
kids were influencing the other kids. I had already tried to introduce Jack
to the mean kids but they just were not going to be friendly.

It was just a shock to my system and I did not have a plan to guide me.
Though I wish I could believe this would not happen again, the truth is that
all kids get picked on for something sometime. Next time, I will remind the
child that he is being mean (if you call someone a monster, you know you are
being mean) and ask him to stop and again try to introduce Jack. If that
does not work, I will ask him to take me to his parent to discuss his
behavior. 

I wanted to believe that Jack did not hear them but I'm sure that he did. He
asked to leave although he'd been having fun and he started clinging to me.
We have had a brief talk with him about how some people are mean but that is
a reflection on that person and what they are going through, not a
reflection of Jack.

I cried a lot and thought a lot and prayed a lot and sought out the comfort
of people who genuinely and unabashedly love Jack. Being surrounded by
people who love him was all Jack needed. He popped out of the shell he was
about to crawl into and enjoyed the loving attention. 

But what makes the difference? Why do some kids play with Jack and why are
some kids mean? Can I really continue to believe in the inherent goodness of
children or do I need to start being suspect of every second glance Jack
gets?

After a whole lot of prayer, thinking, and discussing with my other half, I
think it's the parents. If the children's parents are not comfortable with
Jack and are too busy processing their own thoughts about Jack then they
cannot help their children to feel comfortable. They will not encourage
their children to play with him if they cannot get past his differences and
see him as a child just like their child(ren). 

Some people live their entire lives surrounded by people that look and act
just like them. When they encounter people who are a different color or
speak a different language or have a different culture or use adaptive
equipment (wheelchairs, walkers, ventilators, etc.) or have a craniofacial
disorder they absolutely don't know how to react. Often, lack of knowledge
results in fear. It is sad but true. 

So what can I do? How can I show these people that different is neither bad
nor scary? 

Well, one thing we can continue to do that we do already is to get out there
into the world. I truly believe that it does help for people to see Jack
being the adorable little kid he is. 

I started this blog as a way to keep friends and family easily updated
without overloading their email servers. Fortunately, other people have
found our life interesting and we've spread a bit of awareness that way. 

Fellow bloggers like Jamie <http://jamiebg.blogspot.com/>  at Alabama
Bloggers <http://www.alabamabloggers.com/> , 5 Minutes for Parenting
<http://www.5minutesforparenting.com/> , 5 Minutes for Mom
<http://www.5minutesformom.com/> , and Jennifer
<http://www.dustbunnyhostage.com/>  have highlighted this blog and helped me
to spread awareness. And my bloggy friend Melissa
<http://thelotuspages.blogspot.com/>  has offered me a guest post on her
blog as well. [Promise to get that done soon!] Thank you all so much for
being interested in us and for helping us to show others that, although our
life is a little different, we are a family living out our lives like so
many other families living out their lives. 

We will continue to get out in the world and I will continue to blog but I'm
also going to have to step out of my comfort zone. I find it so easy to talk
to little kids and to write about how I think and feel but in the live
presence of other adults I can be quite shy (friends and family please do
not overload the comments with proof that I am not shy--I know all of you!
*smiles*). I can connect with most kids and usually use that as my opening
to connect with the parents. Obviously, that's not always a winning formula.
So [deep breath], while we are out there in the big wide world I'll start
stepping up and introducing myself and Jack a little more often.

Don't forget to check out the latest Life
<http://allaccesspasstojack.blogspot.com/2009/12/life-is-therapy-whats-in-yo
ur-childs.html>  is Therapy post. 

--
Posted By Marie to All
<http://allaccesspasstojack.blogspot.com/2009/12/life-challenged-me.html>
Access Pass to Jack at 12/10/2009 12:00:00 AM 




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