MBA Mommy

Part MBA, Part MRS, Part MOM…..All ME

Posts Tagged ‘awareness’

Ready or Not….

Posted by mbamommy on September 23, 2011

As I mentioned in a previous post, I struggle a lot with finding a balance between ‘readying the world for Z’ and ‘readying Z for the world’.  I guess that’s true for any parent of any kid, NT or not, but it feels especially true for me with Z.

When we were first going through the diagnosis process, I was adamant about not allowing any special exceptions for him.  I wanted him to be able to fit into society, square peg and all.  I refused to be one of those ‘helicopter moms’ who always intervened and forced the world to bend to her child’s idiosyncrasies and always paved the way for her child.  Yes, I want to help my child succeed and be happy.  Of course I do.  What parent doesn’t?  But, I am also a realist.  I know I won’t be (nor do I want to be) around forever to protect and hand hold my children.  I want them to be independent and prepared for whatever the world throws at them.  I don’t agree with the new fad of not allowing winners or losers in sports and giving everyone awards just for participating.  I think it’s important for children to understand that you win some and you lose some…no matter how heart-wrenching it is for a parent to sit back and watch.  That’s life, right?

Well, as I started learning more about Z, I realized that we did need to make some accommodations, with the idea being that if we make accommodations now and helped him along he wouldn’t need them later.

And, I decided I was ok with that.  After all, it was still in line with my longer term goal of creating a fully functional member of society, right?  And so far we’ve had some absolutely wonderful experiences with the people who surround our son.  His SpEd team last year was incredible, working with him, accommodating his sensory issues and gently guiding him in his socialization experiments.  His private therapy team was equally amazing.  All together, they’ve helped Z make ginormous strides in a relatively short time period.  So much so that we’ve paused a lot of his therapies because he’s doing so well.  And he’s completely mainstreamed in a private school with no outside support.

But, I expected that from trained professional whose job it is to support him.  I did not expect it from the other teachers/coaches who work with him.  I take the kids to gymnastics once a week.  It takes about 45 minutes to get there and I could probably find a gym closer but I am so impressed with the way the coach works with him and the way he’s responding that I’m reluctant to make changes.  He also goes to yoga once a week as an after school club.  Yesterday, he was completely out of control to the point that the instructor couldn’t run the class.  They told me about it afterwards so I shared with her that he has Asperger’s.  She was surprised but was very interested in learning more about what she could do to make the class work for him and the rest of the kids.

Here’s the flip side of that.  Before we found our fabulous wonderful immersion school, I did a lot of research into different school options.  I looked at public, private, charter and everything in between.  We’ve even found a Plan B if it turns out a ‘typical’ school won’t work for either one of the kids.  At some of the schools (public), they knew all about IEPs and Asperger’s.  They’re required to by law.  But, there were definitely differences in levels of acceptance of even the idea of having yet another kiddo on the spectrum attend their school.  There was even less acceptance from many of the private schools.  I was told flat out by several (not mentioning names) that they didn’t have the support system in place for Z.  Period.  Without even meeting him.  They heard the big A and ran.

Can you guess who didn’t get our money?!

But, it all comes back to the dilemma and balance of preparing the world for Z and preparing Z for the world.  I’m hesitant to tell the parents and the support staff in Z’s class that he’s got Asperger’s because I’m scared he’ll be just a label to them for the next 10 years.  But, if I don’t tell them, like I didn’t volunteer it to the yoga teacher before she came to me, then his behavior problems are attributed to being a bratty unmanageable kid and not some underlying challenges that can be addressed if given the right tools.

J and I talked about it the other night and we’ve agreed that we should move forward with letting people know on an ‘as needed’ basis.  Meaning we don’t necessarily need to stand on top of the school with a bullhorn but we should definitely share information when appropriate.  It’s just hard sometimes to know when it’s appropriate and not too soon or too late.

I’m not sure this is the right path in terms of advocacy or raising awareness, but I think we do plenty on that front.  This is all about walking that tightrope of information.  To tell or not to tell.  To ready or not to ready.

Posted in ASPERGER'S, AUTISM, MOM | Tagged: , , , , , , , | Leave a Comment »

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