Tuesday, November 8, 2011

My take on Out-takes

See this...

This is a pause button in my real life.

I try to be as real as I possibly can on my blog because I want people to know who I really am. But, lets face it, this is a blog. It's kind of like internet dating... you really don't know the person officially till you meet them and see all their zits up close and personal.

You may never meet me in person, nor I you. Don't let cyberspace fool you.

Just because I can joke about life raising children with Fragile X Syndrome doesn't mean there aren't moments like these where I just have to say, "stop!"

In my big (and I am noticing it is getting bigger) world of children with special needs I get so tired of all the stuff that "government" or "professionals" try to tell us is the only/perfect way to raise our children. What do they know? I want to know how many of these people telling us what regulations are to be put on our children with special needs have actually raised children with special needs, let alone known any.

Brother and Sister were both able to start early intervention playgroup at 18 months old.

It made a world of difference for them.

But, by the time Baby had reached 18 months, the "professionals" had decided that a play group full of special needs children at that age is not a typical social situation for children with special needs... yep, you read that right... so basically, my child is not supposed to play with other people like herself because they won't teach her the right social skills.  (And I hear rumor that they may do away with the playgroups for early intervention all together and they won't get help until they are 3 with the school districts...)

Hmmm... OK, let's put this in perspective here.

So at 18 months when Baby was barely babbling, unsteadily walking, intimidated by crowds, nervous around loud noises and bright lights to the point of uncontrollable crying these "people" want me to set up a play date with children who are running circles around her, talking up and down and running like toddlers do.

Let's think about that for a moment...

I went through it with Brother...

I heard these kinds of things from the other moms the entire play date:
"Oh, don't worry my kid wasn't talking until his sister stopped talking for him..."
"Umm, does he not walk yet? Oh, maybe you should try this..."
"Your son just bit my son!"
"Oh, umm, does he not understand that? ..."
"Have you had him tested for anything? ..."

And then there is me on the sidelines wishing that my kids could do what their kids are doing, pining away at the thought that they may never be like the other kids, yet holding on to hope that they will beat the odds.

So is that what the "professionals" call typical?

I'd like to see the study's they have done to show that children with special needs shouldn't have playgroups with other children who have special needs.

Here's my take on that out-take:

My children are embraced by their peers who also have special needs. And because of the confidence they have built by having strong relationships and dedicated friends they can face the "typical" children in stride because they feel comfortable with who they are.

I don't want Brother, Sister or Baby to ever feel like they shouldn't be hanging out with their friends with special needs because they won't be able to reach for the stars while in their presence.

These are my life's out takes that I deal with everyday.

We don't always dwell on them because it is not what I want to dwell on.

But, sometimes I think that a voice needs to be heard.

Special or Typical.

It doesn't really matter.

We all have a voice.

Stop reading children with special needs like black lines on a white paper.

Stop studying and start listening.

And that's my take on it.

Oh, and because I love real life, here is some more out takes for you:

Let's face it, I am just not a serious person... but now I know where Sister gets her smile...

4 remarks:

Karen Mayes said...

So true!

I love all your pictures. I think out-take pictures are some of the best to keep. Personally, I enjoy looking at the expressions on my family's faces while we are trying to corral everyone to pose. Spontaneous snapshots often produce the most joyous smiles.

And you have a BEAUTIFUL family.

Johnny said...

How eloquent and genuine you are Rachael.

Anonymous said...

I am a Special Education class aide in San Diego, California. I also have a beautiful son who has learning difficulties, speech delays and ADHD. He has a hard time in social situations like you described which means that it is difficult for us Moms as well. I am in tears feeling validated by what you wrote about playgroups and well meaning, or maybe sometimes not, parents of general education children who just don't understand. I say "Fooey" along with you! As parents we are faced with decisions to follow the professionals or follow our God given parental love and instincts. Bravo for doing just that!! Thank you for your efforts on behalf of FXS and for being so open and honest about how parenting and loving your children comes with real challenges and evidently, REAL LOVE!

Rachael said...

Thank you for your comments. I greatly appreciate your words of encouragement and praise. All parents with special needs children need a good word every so often ;)