Sunday, December 06, 2009

unsolicited thoughts and anger

Sorry to have been MIA so long, I was pretty sick this week.

Have you ever wished for your kids to have special needs? I know I didn't. On Tuesday we have our first meeting with the school district about the boys being tested to qualify for special needs preschool.

I know many people think that "special needs" means mentally disabled. It's a blanket term that can describe many things. I was pretty hurt when a family member told me this week that they don't think the boys have special needs, or really any "needs" at all. I use this blog as my outlet, but I will freely admit it is read by family members. However, I have to use this place to vent my feelings. It hurt very much. I believe that this statement was based on the thought that "special needs" means that my children are mentally disabled. They are not. However, they have diagnosed issues, and developmental delays. That is certain. And to hear this statement as we prepare to have this important meeting is frustrating and hurtful.

I know it is my job to educate. I know it is my job to be compassionate. But part of me (the mama bear part?) is mad as hell. Until you live it, you have no idea. It is heartbreaking to me to think that my kids might not ever enjoy playing in the snow, Jack might not ever be coordinated enough to play competitive sports, and Summy might always struggle with anxiety and fear. Today we went to our local science museum and Summy became panic stricken. The room we entered had a large, spinning propeller and he was so afraid, he ran screaming the other way as fast as possible. He was shuddering and shaking for 20 minutes.

I pray the boys qualify. They need it. Sometimes I find it so hard to explain sensory processing disorder to friends and family. Sometimes I get tired of people telling me "it just seems like they are so normal." I wonder why their therapists, and doctors, and teachers would express concern if there was nothing there.

It makes me cringe to read on the evaluations "at the level of an 18 month old." It tears me up. But then we move forward and do something about it. We have to.


8 comments:

Cate said...

I can sympathize with your pain and anger, it was one such comment that ruined Thanksgiving for me. I hope your boys qualify and can get all the services they desperately need. Just because a child looks normal doesn't mean everything in their life is normal.

Christina said...

I'm so glad I found your blog, because I totally get it!! I really do! Ive had family members say to me "what is this sensory processing disorder" like snotty like WHAT IS IT....I get so tired of people not getting it.
I'm really sorry for the way your feeling. Family of all people are there to support us, not turn on us. If they don't understand, always know I do. And if you need to ever talk, I'm available!!

The Parsons Family said...

As an OT and Mom, you and the boys (well your family) are in my prayers, your blog reminds me daily to always look at a the 'whole' person! Some people think its the little things, but its those things that can make a huge impact on lives daily!! I pray that you qualify and that the boys receive the services that they need and deserve!!

The Long Family said...

I hope you get good news on Tuesday. I have the same feelings as you do. Ryan is still having trouble doing things in school (concentration, talking, etc) and he is so little he has to try harder. It will help them so much! Ryan has learned and grown so much from being in the preschool. I know how it is to read the reports. Even now. I still get teary eyed at every meeting.

Zach's Mom said...

I hear you on this. There is nothing that drives me crazier than comments that I'm overreacting and that my son is just acting like a typical two-year old. And when I try to explain SPD, I get looks like I am speaking Latin. Zach is more of a seeker than an avoider, which I think drives the "he's just a typical boy" comments even more. The school district would not have enrolled him in a SN preschool, and I would not be paying hundreds a month in extra therapy costs if his behavior was typical.

Danica said...

Sending hugs. I completely get you.

Hartley said...

Hi,

I came across your blog and wanted to leave a note.

We all have the same fears. All of us. It is a bond that mothers of "special needs" kids have that separtes us--gives us unity.

I have three boys--my oldest has SPD, and HFA (among other things). So I hear you on the idea that others don't "get it".

My youngest son starts Developmental preschool today--litterally in an hour and half. I prayed he would be admited, and was thrilled that he was.

I tell people all the time that I was the happiest mom to have ever been told her child was "special needs" that has ever lived. Labels come and go--getting your child the help he needs now is all that matters.

Hang in there--
Hartley
hartleysboys.blogspot.com

Squid said...

There's a huge support community both IRL and inside your computer waiting to support both you and your boys. You won't be alone. And to continue @Cate's "just because your children look typical" riff, it's actually the children with "invisible" needs whose parents can have the greater challenges. One minute with my son and most people know what's up, and accommodate (and expectations get lowered, sigh).

Here are some posts I wrote recently for parents of younger children (basically the advice I wish I'd been given six years ago):

On giving our kids visibility and respect along with accommodation:
http://www.blogher.com/you-may-approach-short-bus

On why and how we fight for our kids and ourselves:
http://www.blogher.com/my-baby-rides-short-bus-interview

On Letting the Internets Soothe and Support you:
http://www.blogher.com/let-internets-soothe-and-support-you

On being a friend to parents of children with special needs:
http://www.squidalicious.com/2008/07/being-friend-to-parents-of-children.html

As always, the very best of luck to you.