Friday, October 9, 2009

Venting about Autism



Can I just vent for a second please?  Sometime I hate autism.  It makes things so hard for my baby that shouldn't be.  A coat!  It's 48 degrees here.  So he has to wear his coat to go to school.  But it's been months since he's had to wear one, and it's a new coat, so it doesn't feel right to him.  So it freaks him out.  I had to force him into it.  And by the time we get into the school and get it off of him he's a mess.  He can't settle down, he's hiding behind me, can't listen to his para, is just completely dysregulated.  I could barely get him into the school in the first place.  All from having to wear a coat for 20 minutes.

It makes me so angry and so sad for him.  You know, life is hard enough without simple things being such a big damn deal.  And there's nothing I can to do to fix this for him, or to make it easier.  I mean, I could let him go without a coat, and I do as much as I can.  But his school is kept too warm for a heavy sweatshirt, and he won't layer clothes.  And if it's not this, it's something else.

Asking him why he won't sleep in his bed and him being unable to answer, asking him how his day was and getting the word "nothing" in response.  The whole first month of kindergarten being so hard because it was just "too much."  Going to the "Wacky Webs" at the library the other day and it taking 15 minutes to coax him into the room because it wasn't the part of the library he's used to going into.  Not being able to sit and read him a book, because he won't let me.  Going to Grandma's house, but having to watch a movie over there, because otherwise it's too out of routine.  Only being able to eat 5 things for lunch or dinner.  Ever. 

Don't get me wrong.  I love Christopher with every fiber of my being.  And I am not one of those people who views autism as a disease, something that happened to him , or something curable.  It is a part of him.  But sometimes I get so frustrated that he has to fight harder for things other kids don't.  A coat.  It shouldn't be a big deal.  But sometimes it is.


14 comments:

Really Frugal said...

I have worked with and known families in your situation. The frustration can make you crazy. Glad you have a safe place to vent and hope you have a support group.

Meghann said...

I have a son on the spectrum. It is hard. My son's latest thing is he won't let us wash his hair. I have to make my husband do it, because my son gets so absolutely hysterical it breaks my heart. I have to go across the house and get on the computer with my headphones blaring.

Jennifer said...

Oh tell me about it Meghann! Baths around here SUCK! The water has to be almost cold, because he can't stand it too hot, and he hates the shampoo, and the soap, so he's constantly rinsing his body as I'm trying to wash it, and crying when I try to get him to hold still for a minute. Then there's his personal parts. I'm anti-circ, but if I'd known what a battle it was going to be, I would have changed my mind for him. So, as you can imagine, he doesn't get as many baths as his siblings do.

To say nothing of the fact that he's a week away from being 6 years old, and no closer to being able to bathe himself than he was at 2, because he can't stand to have the soap on his hands. I'm going to be bathing him for a very long time....

I'm sorry baths at your house are so bad. They used to be like that here, but have improved. We have much less screaming now. Hopefully things will get better for you too!

RF - Thanks for your comment!

Meghann said...

My son is 5, so actually not much younger. And your comment made me realize I'm glad we did go ahead and have him circ'ed. I can't even imagine having to deal with that too on top of everything else.

And good to know I'm not the only one with a child who is not bathed as much as he should be. :)

Jennifer said...

It's always nice to know you're not the only one. Makes me, at least, feel like I'm not the world's worst mother!

Dawn said...

My 5 year old grandson has Austism and I can relate to everything you are saying. My daughter does an awesome job with him, but there are still days when she is just so tired because of all the little things.

Hopefully having a place to vent and people who understand will be a help to you.

Trudy said...

I don't know much about autism. I'm starting to learn more my boyfriends daughter is teaching special education I love to go help in her classroom. She has one boy who just melts my heart. I have no words of wisdom just some hugs.

Kristin said...

I am so sorry to hear...I wish I had words of encouragement, but I don't. I am sure there are days where you are frustrated beyond belief. I know I have with my little man.

Best of luck and deep breaths!

Anemone Pie said...

While I'm not too familiar with autism, I sure know how it feels to be a helpless mama, watching her kid struggle. I figure I can understand a little bit, though not fully. Poor little guy and poor you, too. I'm so sorry he has to deal with such struggles. :-(

Erin Lutz said...

Hugs to you.

Shana said...

Oh, Jennifer...big hugs. Your post came across just how I think you wanted it to. That you hate it *for him. As mother's we can all relate to the things that we so want to fix or take away for our children, but we can't. Rather it be something small like a fever or a scrape on the knee, or something bigger. We all want to "take it away" and we can't. If it makes you & Meghann feel better...the bath thing is a BOY thing! I've learned to pick my battles & Logan only has to take a bath every other night.(unless he is really icky) Even then he acts like I just told him he was going to get a shot, just hysterical. I hope the winter months get easier for you. What about a favorite blanket? Maybe you could wrap him in it for the ride to school?

Just a Thought said...

My 9 year daughter is PDD-NOS. It breaks my heart watching her try to fit in and working ten times as hard to do everything else in life. She is now entering puberty, yes at 9. I feel your heartache and if you ever need to talk let me know. Sandy

Jennifer said...

Wow - thank you so much for all the support everyone! It's nice to have a place to vent, where I can get people who aren't judgmental about it, but caring. I really needed that. Thank you!

Tricia said...

I can't even really begin to imagine what you go through. I will pray for you and your family. God bless.

 

blogger templates | Make Money Online