Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘advocating

That Kid is Mine

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Well, here it is.  The beginning of Autism Awareness Month.  The chances are that if you have been here before, you are already pretty aware.  This month is about trying to reach those who aren’t aware.  It is about shining a blue light that gets people talking about autism.  It is about making sure the doctor who dismissed your concerns about your child that they were wrong to do so, a wait-and-see approach is the worst thing for a child on the spectrum.  It is about helping that bewildered parent see just why their child behaves so differently.  It is about helping that child or adult realize that those differences are what makes them so special.  Though there are many challenges for the individual and their families to face, they are never alone.

Thanks to the efforts of incredible people who have gone before us, this journey has been made easier than it might have been.  We should never take for granted the fact that schools provide her with a free and appropriate education, that there are therapies to give her the tools to cope in our world, that there are resources to help me to understand my child, and help her to understand us.  We only have those things because so many have advocated, not just for their own needs, but for all of us.  They did that by raising awareness, by pushing against the conventional wisdom and demanding acknowledgement and inclusion.  We let them down if we stop doing that.  We let our loved ones down.

When I wrote my piece for Parents, I wanted to let the readers know that 1 in 110 is not just a number.  That number is a person.  In our case, that kid is mine.

It was published on April 10th, and you can click here to read what I wrote.  While you are there, check out the range of diverse stories that make up the Voices of Autism series.

Written by Spectrummy Mummy

April 1, 2011 at 7:29 am

Advocating for Santa

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Custom Santa Suit, http://www.costumers.com

Image via Wikipedia

Disney had given me another kind of magic.  Being in a place where my kids got the accommodations they needed, I got to see them have just as good a time as any other kid.  Normally we avoid certain things, or we tentatively try them with me hanging around the periphery, ready to pull out in case of disaster.  But at Disney, all I’d had to do was ask for the supports my kids needed, and they were given.  Which leads me to think, maybe I just need to ask more.  Maybe instead of feeling like I’m putting people out by asking for certain things, I should instead approach as though my kids are entitled to enjoy the same experiences as other children, and I have every right to ask that they be included and assisted in that goal.

I know, you’re probably wondering why I’m not there already.  After all, Pudding is in the public school system, and receives numerous supports which, while not taking for granted, I do accept as her right.  But the law here explicitly states her entitlement to a free and appropriate education.  I don’t have a hard time pushing for what she needs there.  It is when there is no legal framework in place, when we rely on goodwill that I find it harder to insist on such supports.  When I think, wouldn’t it be nice if she could do X like the other kids, but we don’t because it is too hard.  I loved taking Pudding to a sensory showing at the cinema, but until now, I’ve held back on asking.

I’ve been looking for a Sensitive Santa for a while now.  We just never seemed to be in the right place at the right time, and eventually I gave up for this year.  We’ve just been too busy, and I haven’t had time to talk it through with Pudding.  We walked into a mall in Orlando, and saw the familiar site of families queuing up to get their pictures taken with Santa.  He wasn’t a “sensitive” one, but nonetheless, out of nowhere I became determined that Pudding and Cubby took part in this quintessential childhood experience.

I approached the staff, and asked explain that Pudding found it impossible to wait in long lines.  I asked if they could suggest a time when we could return without having to queue.  The lady consulted with another, and the next thing we knew, we were being ushered to meet Santa that very minute!

I’d love to say that Pudding jumped on his lap, and told him what she wanted for Christmas, but with no explaining or coaching, that was never going to be.  She refused to sit on his lap (rightly so, as we spend the rest of the year ensuring stranger danger), but she was content enough to sit with me next to him.  Cubby screamed his little heart out, but calmed down enough when Daddy took him to sit on his lap.  In the end, we got a group photo (including Ernie) that is acceptable.

More than that, I got a lesson that it is okay to ask for what my kids need.  Being an advocate doesn’t just happen at school, I need to get comfortable with doing it all the time.  So comfortable, that when those beautiful big eyes are watching me, they see that it is okay to ask for what you need.  I can’t think of a better present to ask from Santa.

Written by Spectrummy Mummy

December 17, 2010 at 7:58 am