I have never prayed that my children would not be on the spectrum; I have prayed that life would be fair to them.
That society would have patience and understanding for them. I prayed that the stigma of ASD (autistic spectrum disorder), AS (Asperger syndrome), autism, or PDD-NOS (pervasive developmental disorder-not otherwise specified) would disappear. Through education, society would embrace my children and value them for their creativity, intelligence, and gentle souls.
Being on the autism spectrum is hard.
I watch as they weave their way in life. As the parent of a child on the spectrum, it takes strength and stamina, more than most. There is really no guide or manual to read, which adequately enlightens anyone to be a parent. Truly, there is no handbook on parenting a child on the spectrum. You learn day by day, tear by tear, and smile by smile.
There will be smiles. There will be victories. Expectations and priorities will change. You will change.
I used to think the days of parenting a small child on the spectrum were the most challenging. There are meltdowns and constant watching for safety issues. Those days will grow you as a human being. They will test you to your core and strip away any superfluous values.
However, as my children have gotten older, I have realized that the challenges just evolve. You worry about their connection—or lack of—with others. You wonder where they will fit in, not just to survive, but to thrive and find joy in their lives. Friendships and relationships are hard.
Your heart will break for them.
The challenges are different now. As a parent, letting go of what others think has been the greatest lesson. It’s an important lesson, one I continue to learn and everyone could benefit from. So, I guess that makes me lucky. I have amazing teachers in my life—my children.
At the age of 17, my son did a video for his IEP (individualized education program) team at school. He was asked what he would like the team to know about him and his desires. He said this:
“Walt Disney said, ‘I think it’s important to have a good, hard failure when you’re young. I learned a lot out of that,’ and so I would like the opportunity to fall on my own.”
When I heard this, my heart knew he understood life, maybe better from a primary level than mine. The opportunity to fall on their own is so hard for any parent to allow. I have learned to let them fall. I always make sure I’m there to encourage them to get back up, even as they navigate the 20-something world.
The challenges are real.
I am hoping for a world that can understand that many challenges of persons on the spectrum are invisible but exist. I am wishing for a world where being different is accepted. I guess I want life to be fair. As a grown-up, I know that’s not true, but as a mother, I can’t stop wishing it.
So, at this point in this amazing, exhausting, heart-breaking, elating journey, I am just praying that in reading this, someone might take a moment to get to know, chat with, or be just there for someone who’s a little different. I promise you, you will get some great perspectives and insights.
Or maybe you can just sit quietly together; in silence our hearts can still speak.