for those of you don’t know, april was autism awareness month. we have some amazing parents who are part of our community who are living with autism first hand in their families. as we continue our conversations about justice, we are focused on listening to others & trying to learn from each other so we can gain understanding and continually ask God to show us what it means for us, for our community, for the Kingdom of God:
april was autism awareness month. share with everyone why you are so passionate about this issue.
As a case manager, my primary work revolves around families whose child–or children–are affected by autism. I have worked with many families–wealthy and poor, white, black, and Latino–and almost all of them experience the same struggles with schools, with insurance, and with activities we take for granted.
As the father of a child with an autism spectrum disorder (ASD), I have had to put my education on the shelf, leave a wonderful job and move to another part of the state, and even decline pay raises to make sure my son had the services he needed. It’s been very difficult but worth every bit.
what are some stigmas attached to autism that you see in your day to day work?
I am fortunate to work for an organization that serves individuals and families affected by ASD and other developmental and physical disabilities. I don’t usually hear that sort of thing.
Out in the world is another thing altogether. When my son talks a little too long on something he’s interested in, or has a meltdown in public, that’s when I see the “what’s wrong with him?” looks or the eye-rolling, or any of the other indications of disapproval that abound.
The worst thing in the work is when I see the same thing from the kids. It just breaks my heart. My son wants to have friends; he just doesn’t know how to make it work.
how has your family experienced first hand being marginalized or cast aside?
When I was in grad school, we lived in campus. Bad idea. My son, not diagnosed or getting any help at all, was running away from us, ignoring our calls to come back or stop, and was labelled as “undisciplined”. We, of course, were not being “good parents” despite having two older children who were doing great. Go figure. In the end, we were asked by the school to “take a break” from class and to return once our therapists could attest we were okay to return. We still havent returned.
Year after year, we have had to fight for the help we could easily prove our son needed. Despite our education, we were often treated as though we wouldn’t understand what they were saying, or that they could somehow know more about our son than we did.
what do you wish more people knew about life with kids on the spectrum?
I have a friend that says, “When you’ve met one person on the spectrum, you’ve met only one person on the spectrum.” These are kids that have the same needs as every other kiddo on the planet; they merely need some extra help in some areas. Get to know the child, and the family. Moms, dads, and even the brothers and sisters all need support, too.
what words do you have for a parent who might just be finding out a diagnosis or feels really alone in their situation?
There are LOTS of parents out there, and they have been there. There are organizations that can teach, guide, and support you. Talk to them. Let them help. Dont forsake the other relationships in your lives: your marriage, your other children, your friends. Find time to keep those relationships going. You will need them.
what have been the most helpful things to you in your journey?
I have a friend whose son, now a young man, also has an ASD. He helped me understand that as the father of a child with a disabilities I would need to come to terms with the loss of one set of dreams for my son, and to embrace the possibility of a very different future for him.
My wife is amazing. I was much slower in catching on than she was. She has never stopped fighting for our son, and I have often had to rely on her to lead the way. No one could be a better mom for him than she.
There is SOOO much to learn, and the information is always growing. Getting connected to others–parents, organizations, newsletters–keeps me informed, and helps me understand how to keep going in this marathon.
what is the hardest part?
He wants to have friends, but doesn’t really know how.
Every day I see him struggle with those kinds of interactions that most of us do so easily. Children his own age see him as “weird” and often avoid or openly exclude him. It clearly hurts him, and I bounce from anger to heartbreak every time it happens. I don’t know what to do to really change that.
what are you learning about God and the kingdom on your journey?
God is the ultimate multi-tasker, and is never caught by surprise by those situations that will freak me out. Looking back, I can see how God was working in past situations to care for us in our current situation, and I know that God is “working things together” in our current situation to address things that haven’t even happened yet.
This would never have worked without the hands and feet of the “Kingdom”: our friends, family, and the “big C” Church, who were there for us when we needed. It truly takes a village to raise a child, and ours is no exception.
what brings you hope?
I’m not one to quote Scripture, but Romans 5: 3-4 frequently comes into my mind when things get crazy:
“…but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”
I don’t think I actually “rejoice” in my sufferings, but I do believe God has walked with us over these many years, and I know I am able to endure the day-to-day difficulties because I know God is still with staying with me in all of it. I am full of hope: that (mostly) enthusiastic anticipation that the future has amazing–and not-so-amazing things–in store for me, for my son and for our whole family, and that God will continue to be there with us though it all.
