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Home/Perpetual Parenting/Caregiving/A Trip Down the Halfpipe

A Trip Down the Halfpipe

An autistic stroll down memory lane.

I Digress…

I had not planned to post today. However, I am going to do something quite unusual for me.  I am going to publicly share my feelings and emotions (omg, I can’t even believe it myself.) I have been working on the next chapter in my story of Jess. As with my other posts about our early experiences, I am reviewing old documentation. While beginning to read, I feel some old irritations and frustrations stirring. Before I know what is happening, my emotions are like a snowball rolling downhill. Well, maybe not like that. Maybe it would look more like watching someone skiing the halfpipe, with the top on one side being anger, frustration, and disappointment. The top on the other side would be guilt (dang, there’s that word again.) The what-if’s would be down in the middle.

Guilt –

Mom & Jess talking
Posture when we know she is listening

I failed Jessica. I should have done something different. Maybe I should have homeschooled her. Not only because I KNEW what she was capable of doing, but also because a doctor specializing in clinical Neuropsychology strongly suggested with the consultation and support of autism experts that we develop a home-based program. It was his opinion that only through adopting a highly structured behavioral program for autistic children would Jessica be able to overcome much of the autistic symptomatology and be able to meet her potential.

No wait…

Frustration, Disappointment –

I was not able to do that. I had two other babies at home that were also demanding attention. It was the education system that failed Jessica. The same doctor referred to above also stated that traditional interventions for visually impaired children, for organically impaired children, or for Intellectually Impaired children would all be misfocused and ultimately unproductive. Of course, this report was shared with the school system. They should have put her before the almighty dollar, believed in her, accepted her for who she was, different and all. They should have looked beyond their special ed “norm” (Yes, I think there is such a thing) and believed she was capable. 

No wait…

What-if’s –

She is still capable of learning. I have already said so. Why do I not just start now, plan some structured time and teach her some things that are relevant. 

No wait…

Guilt –

I have to work. I can’t even manage time to clean my house. Sometimes I forget to check the mail for days… oh man…I am back to failing her again.

But wait…

What if’s –

Who was right? Were they right? Was I right? Why could they not see what I saw? Believe what I did? What if they had seen it my way? Would it have made much of a difference in the big picture? After all she is who she is…Oh, wait…I forgot…

Mom talking to Jess through a paper towel roll
Spontaneous methods of communication – paper towel roll

(As Jess would say, “Oh yeah, that’s right, that’s right!”)

Acceptance –

What was it I said in my post, Transition Planning and Aging Out? What did I say before I delved back into all the old documents, stirring up all the old frustrations and emotions? 

I have accepted this is what it is. This is our life. Everyday. It’s our version of normal.

As I move forward with my story, I guess I’ll have to keep reminding myself of that for a while (or longer). 

IMG_3276
Reindeer hat with broken antler. She likes it because it doesn’t come down close to her eyes.

 

 

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March 10, 2015 By Val 7 Comments

Filed Under: Caregiving, Guilt Tagged With: Cortical Vision Impairment, Guilt, Hydrocephalus, Multiple Disabilites

Reader Interactions

Comments

  1. Danna

    March 14, 2015 at 12:45 am

    I love your blog!

    Reply
    • Natali

      March 14, 2015 at 5:11 am

      Thank you Danna!

      Reply
  2. Anonymous

    March 11, 2015 at 1:47 am

    You’re a hero !!

    Reply
  3. Angela Hagler

    March 10, 2015 at 8:37 pm

    Wow. Very emotional. I think all parents have these thoughts at one time or another. Even with children that don’t face physical or mental challenges. You are a good mom that loves her children. Your emotions and questions are part of parenting. But I know that your feelings and emotions are on a different level. Just want you to know you aren’t alone.

    Reply
    • Natali

      March 10, 2015 at 9:16 pm

      Thanks, Angela.

      Reply
  4. Hannah Brooks

    March 10, 2015 at 6:17 pm

    I love you. You are a wonderful mother and person. Jessica is and has been so lucky to have you (as are Madison and I).

    Reply
    • Natali

      March 10, 2015 at 9:14 pm

      I love you too sweetie!

      Reply

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