What’s one of the hardest things about having a child on the spectrum? I tear up at this question every time. The deep and heated anger wells up in the pit of my stomach. For a very long time, the answer was the guilt I carried for feeling disappointed or angry. Now, realizing I was literally a walking grief chart and seven years into the process; the thing that is the hardest isn’t navigating and balancing all the different therapies or demanding services from school. The hardest thing, for me, is knowing the world that I am bringing him up in.
It’s like having an excellent meal and raving to the waitress, manager and chef but leaving no tip, no review and no trace of you ever even being there. It falls short and flat.
Having a Child on the Spectrum | The societal definition of support is not really support anymore especially when it comes to having a child on the spectrum. It’s instantaneous “knowledge” that we garner from a quick search on google which negates that living the situation is totally different and the difference is distinctive. It seemingly opens up our ability to easily access an experience based on a perceived notion (which has already formed our view). This miraculous knowledge then bolsters us to start advising, judging and assuming. I’ve have had to bear more than my fair share of mom shaming, assumptions about my son, judgement for needing time and space from my home and horrible advice that left me wounded and worried for my son.
We do not know everything from personal experience and that’s the way it’s supposed to be. I believe, we are supposed to gather knowledge by reaching across tables, across the internet and across limits and grabbing on. Holding tightly as each person unwinds the intricate lines on their hands of where they’ve touched.
We take people’s differences and struggles and box them up in a way that we can comfortably digest them. We all do it. But, I think this year has shown us that this unacceptable way to live is how we “love” our neighbor. We say we support you but that’s it. There seldom is further action. We rarely skip out of our lane to go into someone else’s struggle with them and ask with the intention of listening and learning.
This makes me sad for about 90% of our population who struggle and that are on the spectrum. Because who can they count on to take up their cause with them? All in. And, who do they know will post a quick quote but look on as the fight devours a few dedicated individuals.
There are some populations that don’t get a fair shake. No matter what your viewpoint may tell you. I write this to amplify my son’s life. The way God made him. The way I love him. I take up his fight for a place in this world and others so that I am the “ fight”. So, I’m not complacent in keeping viewpoints the same and even when it hurts, expanding a view where my position had left a narrow vantage point. Because, at one point or another, I’m sure I’ve said things that have hurt others with my unintentional naivety. I’m not doing that anymore.
A few things to help jump into a subject that may not be comfortable:
Find a Facebook group or an Instagram page and follow with the intention and understanding that you are there to learn.
Journal your journey so that you can see what questions you have? How best to ask? Where you started and what you attain.
Ask a friend walking the path. Respectfully, honestly and lovingly. Ask to understand. I think that the world is screaming for understanding so most are willing to share.
Know that even thinking about a certain topic is progress.
We really could shine a light for each other, lifting as we climbed. But, I think that, as a people, we are only as strong as the person next to us. And, understanding the person next to you, right next to you could be the difference of their life taking on a completely different meaning just because someone stopped to ask their story and the change resulting from that.
As Haddon Robinson said “Have you loved your neighbor lately? Mind if I ask them?”