Kaylynn Johnsen
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California: To touch or not to touch?

4/23/2020

4 Comments

 
Autism from a mama who has been there. I am going to try to post every day this month. Please feel free to ask questions in the comments.

California: To touch or not to touch?

I am going to tell you a scary story. One that should make your blood boil.

We were living in Vacaville, CA. My autistic son was in kindergarten. He had a lovely teacher, she was great with him and open to all the IEP and 504 modifications. He loved school.

One day I was on my way home from somewhere, probably the doctor’s office - someone was always at an appointment – and felt prompted to swing by the kids’ school. I saw an empty playground. And one lone child. Was that my son? It was my son! Alone!

I am ashamed to say that I lost it. But I think it is understandable. Hopefully, you will understand.

I parked, badly, and ran to the monkey bars. I grabbed my son, tucked him under my arm, and stormed into his classroom. I was informed that California had a rigorous “no touching the children at any time for any reason” policy. (I don’t know if things in California have changed since 1996, I hope that have.) I informed the school that I held a very strict “my son will not be attending until you can guarantee his safety” rule. After consulting my son’s rights booklet, remember the one I told you to memorize, I called the school, and within a few weeks, my son had a personal aide. You must be aware of and knowledgeable about the laws in whichever state you are living in.

Years later, we found ourselves back in California. This time my son was in Junior High. We had previously been in Texas, and part of his 504 accommodation was a “quiet place” he could go when he was overstimulated or stressed. The area that had been chosen was a section of the Behavioral Academic Classroom. California read that to mean that my son needed to be there all the time. Oh, the fights! There was no way that I was going to allow someone who didn’t even know my son to put him in danger of regressing and relapsing into behaviors that he had previously overcome. Oh, I just got passionate. I need to breathe.

No matter where you are, you have to work within the structure in place. You can work to change policies and practices. But, while that happens, work with what you have. Fight for your child. You are their most reliable and, sometimes, only advocate!
​
Celebrate the small stuff. Be flexible. Laugh.
4 Comments
Kimberley Little link
4/23/2020 10:40:36 am

Our Mama Bear personality certainly comes out when we need to defend and protect our children. I feel the angst and fear in your words and for your child in those scary situations. You go, woman!

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Kaylynn Johnsen
4/23/2020 03:10:09 pm

And I feel you would do the same. We are our children's voices.

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Carrie
4/23/2020 08:09:25 pm

Wow, we have shockingly similar stories. My child once somehow got swept up into another class's passing line in the hallway and ended up on the playground somehow (fortunately not alone, but also not supervised or known to anyone out there).

And then there was the time I found out my child's chart was labeled "behavior problem" at the dentist, and therefore not "allowed" to have appointments later than 9 AM since "behavior deteriorates during the day". Um, okay... first, every person who has ever worked with my child has gushed ad nauseum about wonderful behavior and obedience; second, Sensory Processing Dysfunction is not a behavior problem; and third, if you are a dentist who thinks that an overactive GAG REFLEX is a behavior problem, you are definitely not allowed to be sticking sharp metal things in my kid's mouth. :/

All that to say, I hear you!

Reply
Kaylynn Johnsen
4/27/2020 12:24:34 pm

Thank you Carrie, it is amazing how many of us have similar stories. But, we continue to the best we can and advocate for better care for our kids.

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    Kaylynn Johnsen

    Just a Grandma with many stories to tell.

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