Strategies for Advocating for Your Child on the Spectrum- #7 Advice
When you become a mom, you automatically become an advocate. But even more so when you have a child on the spectrum.
I have two children. One on the spectrum and the other neurotypical. My roles as an advocate were different for each of my two children. I believe that these two types of parenting aren’t all that different until they need to be different.
Joseph needed me to be his advocate for everything. My second son needed me to be his advocate only in some situations.
I realized the difference between how to advocate for a child who has a lifelong developmental disability and for a child who hits occasional bumps in the road—my neurotypical son needed a parent who advocated but he also could advocate for himself early on whereas Joesph couldn’t. Later on, he even began to protect and advocate for his older brother. I now have both perspectives.
As soon as Joseph entered public education, I understood that I needed to be his advocate from both a mother's and educator’s point of view. I had a real advantage as an educator who was very familiar with school policy, the teachers, and school administrators. This knowledge helped me navigate my strategies for my son each school year.
What I didn’t realize was how pervasive every experience was going to be as my son’s advocate. I had to learn the ins and outs of the law, each teacher’s classroom management style, level of understanding and empathy, and school policies.
I quickly discovered that each decision I made had crucial short-term and long-term impacts on Joseph’s experiences. However, no matter what I thought I knew or whom I knew, a major crisis occurred that I didn’t see coming.
It really didn’t matter whether I was advocating with a doctor, therapist, teacher, neighbor, or family member because It was always the same process.
Once I left the encounter, I often readdressed the situation to problem-solve how to get whatever it was Joseph needed. The challenge was always trying to stay on track to obtain the outcome I wanted for my son.
As you advocate for your child, focus on the goal and use your mother’s guidance, intuition, and passion as fuel to problem-solve and find a way to get there.
How to Get the Outcome You Want for Your Child:
I usually started with a “why” of needing to meet with them. For example, when I had a conference with a classroom teacher who would be navigating most of Joseph's school days one year, I prepared a detailed explanation of what Joseph’s needs were in order for him to be successful in his educational environment. I thought if I could support both the teacher and my son, then we had a pretty good chance of being successful.
Sometimes I needed to remind myself that whomever I was speaking with did not know much about either my son or autism. I had to be strategic in a way that kept the meeting positive and not scary.
I realized often that, although I gave it my best shot, some professionals didn’t really comprehend what I was attempting to explain. Few conversations ended in a deep understanding of how to determine the least invasive path for my son. I knew at some point that frustration was going to be a part of the experience for both sides.
I tried hard to channel my anger and frustration as fuel to keep us all on a positive path toward finding resources. I tried to stay at least five steps ahead with possibilities of solutions. My support group was my outlet for my anger and frustration and it kept me from losing my mind and temper with others. Support is essential.
I learned quickly that if my best efforts did not result in connecting, then I needed to go back to the drawing board. Sometimes I found a solution quickly; other times I did not.
Advocating was exhausting at times, but always worth the effort in the end.
Even though many people entered meetings in a defensive mode, I tried hard to stay in a zone of kindness that focused on the big picture—my son.
I hope these steps to advocate with kindness help you navigate your child’s ASD journey. If you would like deeper advocacy action steps, please go to A Mother’s Guide Through Autism book Chapter 9.
Let Kindness Be Your Superpower Today!
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The days following hearing the words “Joseph is autistic,” were some of my darkest days. I was living with the deepest pain I had felt in my 32 years of life. It was my first life tsunami. I didn’t know the way out to find the light. It felt like instantly being lost and not knowing which way to go.