First comes questioning, then comes fear.
A diagnosis brings more fear and uncertainty. We then search for answers. Is there a cure? How can I help my child? How do I find ways to improve my child’s life?
These questions (and more) were the motivators for my journey as an advocate for my kids. Now, years down the road, after years of concerns and successes, it might be time to back away from the advocate role and pass the torch to my kids.
Being an advocate for our children is natural for most parents. We see a problem and want to fix it. For my older, non-verbal, non-ambulatory son, it was necessary for me to be his voice as well as his champion.
There were so many battles to fight.
Like insisting that others look at him and see the wonderful, bright kid within, not the limitations of his physical self. We fought to keep him before his adoption was final, (just give him back, you didn’t ask for a kid with disabilities). We fought for the right treatments, schools, and for inclusion with his peers.
Our daughter required us to advocate for her health needs. As a preemie, she required surgeries and early intervention therapies. She struggled with learning due to attention issues. She struggled when her brother died. She started having anxiety and depression.
Because she had a need to feel she was in control, my advocacy for her was quiet and behind the scenes. She became a strong self-advocate. She learned to express what she needed to succeed. As a mom, I still wanted to be the advocate even though she was capable and effective.
Our youngest was diagnosed with Asperger Syndrome at an early age. Advocating for him was hard. His lack of communication skills (though he had a huge vocabulary) made it difficult to even know what he needed. He was bright, but only did well in a few subjects at school.
I’m not sure how many “organization systems” we tried to help him succeed. None worked well. A move to public middle-school got my advocacy skills honed again. He needed so much more than was obvious.
While he read at a high-school level, he could not stay organized to get homework assignments home and back to school. He struggled with relationships and was an outsider in the school setting. Advocating for him could have (and maybe should have) become a full-time job. Even at 21, he needs an advocate to see him through the rough patches. To guide him toward a good outcome.
So, when are we done with advocacy?
Our oldest son passed away and our advocacy ended. Our daughter insisted on becoming her own advocate and does a fantastic job with it. I still must be reminded, even though she’s a capable adult, that she still needs me to be her mom. Our youngest son still needs us to guide him and regularly advocate for him.
Not sure when this part of my life as an advocate will end, but my goal is for my son to become his own best advocate as he continues on his journey.
“Hopelighting” is a compilation of heartwarming stories featuring El Paso children with disabilities. It was written by parents for parents, educators and service providers who work with children with disabilities.
Categories: Family Support