Mental Health

Topic Tuesday: Self-Advocacy

Life has been very overwhelming for me lately . . . especially when it comes to dealing with the behaviors of my little girl, who experiences the world through Autism Spectrum Disorder (ASD).

There’s a saying for understanding people diagnosed with ASD, “If you’ve seen one autistic person, you’ve seen one autistic person.” In other words the signs and behaviors may vary, but some characteristics are still shared.

It alters her perception of herself, the world around her, and the people in it. It affects her social interactions with other children. She is very social, but only on her terms and in ways specific to her worldview.

Her worldview is a comingling of the real world and the fantasy world she envisions. She tends to see and treat people as living, breathing, walking, talking characters in the ever evolving script in her head.

She wants other children to do exactly what she wants and expects them to agree with her fantastical, alternative perception of reality. When they don’t, she can’t process it in constructive ways and lashes out, many times in physically harmful, or destructive ways.

Yesterday’s post describes her behaviors at home exemplifying these things. Up until this point, the more extreme behaviors and interactions were limited to the world outside of school.

Now she’s exhibiting some of the same behaviors in the classroom.

Her father and I were contacted about her classroom behavior three times in the two weeks leading up to Spring Break. Two of those times he had to pick her up from school early because of her disruptive and violent behavior.

My struggle isn’t just about coping with her actions. It includes dealing with his reactions.

She goes over to his place every weekend. He picks her up on Thursdays after school and, usually, takes her to school on Fridays. After the second incident of her being excluded from school, he decided to not take her to school on Fridays.

The whys and wherefores of his decisions are not mine to tell. Just believe me when I say that, once he makes that kind of a decision, it’s virtually impossible to change his mind.

However, having her miss one day of school every week is not an option. Neither is having a 1:1 Paraeducator in the classroom with her full-time.

My idea is to have her attend an ESD operated public school serving children on the Autism Spectrum. My assumption is, or was, that the teachers and staff would be better equipped to handle both her academic needs and her behavioral challenges.

Towards the end of first grade, last year, I decided to contact the district office for the SpED Program. There had been too many struggles and frustrations with having her in a general education classroom. I wanted to see if I could get a referral to the county operated school for children dealing with autism.

I hung up from that call, with tears of extreme frustration, running down my cheeks.

My understanding was that she would have to go through every process, jump through every hoop, and fail, before she would be able to get a referral to what I considered to be a better option. I decided to wait and see how this school year would go.

That was then. This is now.

Now, I’m ready to find a different solution, than just allowing the school to figure out how to deal with this behavior before it becomes a truly dangerous space for other students and for her.

So, I wrote an email to the District SpED Service Coordinator in charge of her school. I cc’d everyone I could think of, including my daughter’s various service providers, the IEP team, at least those I could remember, and the school’s Principal.

I detailed what had happened, what I wanted to have happen, and why I thought it was the solution. Then, I clicked “send.”

Less than 24 hours later, I got a phone call.

In about 30 minute the Service Coordinator and I exchanged information and ideas. We figured out a plan of action. It increases her direct involvement with my daughter and gives me the patience and willingness to exercise that patience to see if the new IEP will help mitigate the behaviors.

She followed through on the first step and sent a follow up email to everyone I had cc’d, including my little girl’s father.

“I’m liking what I read in [the Service Coordinator’s] email . . .”

By sending that one email, I advocated for my daughter. I also advocated for myself and my power as her mother.

The only things more powerful than an email are voice-to-voice and face-to-face interactions, as long as the communication is kept mutually respectful and both parties are willing to listen and work together, instead of against each other.


8 thoughts on “Topic Tuesday: Self-Advocacy”

  1. Great job advocating for your daughter! It sounds like the neurotypical world is hard for her to maneuver in. As a person who is not neurotypical, I would guess that your daughter is trying to manipulate people to make sense of a world that’s too chaotic for her to understand. She just needs to find more productive ways to make sense of the world and I am glad that she has so much support.


    1. She’s definitely manipulating. I had to pick her up again, yesterday. I asked if she figured out that if she does those things then she’ll get to go home. She nodded yes.


  2. It’s so nice to see a mom who advocates for her child. Too often, the parent is unable to do so, and the child is left to deal with it. I think the more communication, the better. And mutual respect is of course very important. Unfortunately, the parent can be labeled as being a threat by the schools but the truth is, that parent just wants to know what’s going on and have open communication. I’m glad the case manager is helping 🙂 I hope the team can come up with some mutually beneficial plans and implement them!


  3. What a great idea to copy everyone in to the same email. Another email after being sent home yesterday is a good idea too. Keep after them and they’ll do something just to make you stop.


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