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Thursday, January 13, 2011

Ok. Tell me this is not appropriate.... I'm ok with it.

Dear Pappy,
Yes... Pappy.  I remember when you said you were frustrated about how much attention was paid to the Vietnam war.  That you didn't want to diminish the enormity of the conflict in Vietnam, but it seemed people had almost forgotten about the war you fought in... the Korean conflict.  The war (I know... it is not really a war) your friends were injured or killed in.  I remember that you just wished more attention was paid to the war that was so important to you.  I'm about the post something terribly similar. (Mom always said we were the same person just generations apart).  Autism gets a lot of attention. Ok. I said it. I'm just a little frustrated.  As I navigate the fine motor skills, gross motor skills, every skills out there - to try to find some things for Alexander... there is so much geared toward Autism.  It is the Vietnam / Korea problem.  Autism is so prevalent in our society; it affects so many people ... there are tons of resources for it. I don't mean to diminish the issues that people who live with or have children who live with Autism must face on a daily basis.... but I'm struggling to find things that will help my non- Autistic baby.  Ok. Done.There's my soapbox for the day. You can all hate me now if you like. Sorry.

**Just so everyone knows for sure where I stand.... There are many resources for children with disabilities that are not part of the Autistic spectrum.  They are often interspersed with many many many resources for children who are on the Autistic spectrum.  All people who have some disability need to have places to find information.  All people need support.  Please don't interpret this post as anti- Autism. IT IS NOT. It is just pro other resources for lesser known disabilities.

Please don't hate me!

ps.... Miss you tons ... Pappy

4 Comments:

At January 13, 2011 at 8:04 PM , Blogger Kisses4Kaylee said...

I completely agree with you, Kristen. When Amanda was first diagnosed with Autism, there really was not much available for her and her diagnosis...it was really just starting to become recognized as being 'prevalent' and an epidemic. Now, there are a ton of resources and objects designed specifically for children with Autism...I call it the manufacturers' gold mine; with so many children diagnosed with the syndrome and still no idea what causes it, anything and everything can be marketed to parents of Autistic children, and we will buy it. As I get word of walk-a-thons, workshops featuring noted speakers and participation opportunities for Amanda in the name of Autism research, I turn my attention to Kaylee and feel a bit jealous that there is nothing like that for her. I mean, I know that there is A conference every two years about WHS, but there is nothing in-between, and as we all know, the doctors and specialists really leave a lot to be desired in the "well-versed-in-WHS" field. Kaylee's diagnosis still leaves me overwhelmed because I really do not know what to expect for her-- even among her "peers," she is not hitting milestones as the same rate. The bottom line is that every person out there knows 'someone' who is (or someone whose child is) affected by Autism...but the same cannot be said about WHS. Maybe if that were to become the case, there would be more available to help you feel like you can do or buy something FOR Alexander. Believe me, as the parent of "one of each," I completely see where you are coming from, and I (for one) do not take any offense to your very legitimate observation.

That's why I am so grateful for our WHS network of friends. If I didn't have them to help me navigate the world of WHS and give me insight to therapeutic tools, etc, I would be completely at a loss. That said, I think that many of the things currently marketed to children with Autism will come to be equally effective for our babies...maybe not now, but definitely as they grow.

Love you! xo

 
At January 14, 2011 at 11:14 PM , Blogger Lauren said...

Ha. I for one, AM INDEED "anti autism." As in I wish no one had to struggle with it. But, I know what you are say. Just had to laugh at the little statement you made. You know you are anti-autism. (At least in that sense!)

 
At January 16, 2011 at 7:54 PM , Blogger melissa said...

Kristen, that has to be terribly frustrating. There is so much awareness for autism. I hope more awareness can be raised for those other lesser known disabilities too.

 
At January 18, 2011 at 7:49 AM , Blogger Awn said...

Kristen, I know! When I'm at work, I know exactly who a family should go to or contact if they have concerns about autism. But it's much more difficult when it's a family who has needs that are not on the spectrum. It's frustrating to me that I can't help the families.

 

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