If We're Lost, Then We Are Lost TOgether

4/6/2015

There are days when the worry is crushing. Today, for example, as I lay here recovering, from the kind of flu where your blood hurts, I am feeling especially afraid. Today, I am feeling exceptionally lost. Today, I know tomorrow has to be better.

Will she be okay? My guts hurt when I think of someone taking advantage of her. As I've said, she has a pathological trust of everyone. I've been reading about the elevated risk of abuse for children on the spectrum and it kills me.

Will she make friends; real friends? Will they be hers and hers alone and not the kids that come to see her sister. Will she know the names of the kids are school?

What is she thinking? Why don't her words make sense? Why can't she tell me how it feels? Does she understand any of this? Does she understand it all?

Will she live with us forever? Will she drive? Will she go out alone? Will I ever want to let her leave? Will I ever want to let her go?

What if she needs care when we are gone? Who will care for her? Will her sister shoulder that responsibility?

Are we doing enough to help her? What else could we do? Should I have quit my job? Should I be with her every day?

Will her sister grow resentful? Will she wake up some day and realize that she has been given a raw deal. Will she hold us responsible?

My husband and I have a song. It seems strange because we tend to live more on the pragmatic side of life, and we have little time for romance, but for reasons you'll understand, this song speaks to us. Do you have a song?

6 Comments

Alyssa link

4/6/2015 09:36:56 am

Coming from the child that was the source of similar worries from her own parents, I understand why you're scared. The world doesn't seem suited for Kate, and it's a fight to get your chunk carved out. I'm 21 and am just understanding my sensory issues. 21 and getting better with my voice.
Know that there is a whole community out here that will love her and support her when she needs it. Every day the Autistic community gets louder and more sure of themselves. And they're going to make a future for Kate, no matter how hard it'll be.

Shanell

4/7/2015 02:13:18 am

Thank you ;)

Jaime Prieto

4/7/2015 04:09:40 am

Don't despair, with a Mom like you always caring and giving it all for Kate, she is going to have a great future. It all will be ok!

Adam w link

4/7/2015 07:40:09 pm

Thank you for the post. Like most things you blog about I can relate. And with planning and all the organization in the world, things will change and be out of our control. But the core strengths and love you instill in Kate and her sister will far outweigh any negative.
The unfortunate part is there are bad people in the world. My background in criminal justice made me want to, at first, close off my son to anyone who could hurt him. I built a whole area on my house in the event that he couldn't live elsewhere down the road. But when I sat and thought about it, I could give him the tools and the skills slowly over time. And although the may not immediately react like he is absorbing those skills, he would eventually gain true knowledge. And to be honest he is 9 and he is repeating those skills and loving comments back to me. I rarely thought he was listening.
I hope you are feeling better (drink some red tea) but mostly know that you and your family are giving Kate tools now thy have yet to be reflected back to you! :)

Nicole

4/12/2015 12:49:09 am

I think if she is happy she will be ok. There's a lot of worry which I totally get but there are lots and lots of different people in the world, there is no need to fit in when everyone is different. Teach her to stand out, teach her to be true to herself.
Perhaps she won't drive, perhaps she won't want to, maybe she will live next door to you, or in a care centre. If doesn't matter what she does as long as she is happy and you can find trust in people who will help her.
My son is overly friendly to strangers too. I'd suggest role play, you be the stranger and get her to shout 'stranger danger' or something. Bear has only just grasped the concept of pretend play so it might not be something you can do. You can also buy child gps trackers so if, God forbid, something were to happen you could find her asap.
Nicole xx

Scott Rittenhouse

4/14/2015 07:59:51 pm

Hello, I am a high functioning autistic that had a lot of the same issues when I was your daughter's age. I know it must be tough wondering, my mom told me it was for her. I am 26 years old and its been hard. I have said things that made people mad even though I didn't mean to. Changing my schedule almost kills me every time, and I still can't be in a walmart for more then an hour.

But I have graduated high school. Am a successful call center rep, and even have a beautiful wife who loves me. I have friends, enjoy video games and fully independent.

It must be scary, but I can tell you that it will get better. Just keep strong.

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If We're Lost, Then We Are Lost TOgether

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