Parenting a child with autism is not easy. We struggle daily to level the playing field for our children. Honestly, we have no choice but to stay in fight mode and this can be overwhelming. The moment you let your guard down, something could slip through the cracks.
So I worry. I worry because I know that there are callous people in this world. They do not give two hoots about the vulnerable. I read their comments when they complain and ask why their tax dollars have to go toward educating our children and providing them with services. I read stories about our children being abused in schools and residential facilities.
I know that when our children age out of the school system there may not be many appropriate services for them. (People forget that children with autism grow up.) I know how much we have to fight for our children to get an appropriate education, services, and accommodations.
We do our best to protect our son with everything we have. When we feel depleted, we dig deep down and retrieve one more shred of perseverance to continue. So what can we do as parents to try to level the playing field for our children?
1. Have a comprehensive estate plan that includes a will, health care proxy, special needs trust, and life insurance policy. Death is inevitable and it is also scary. However you don’t want to leave these matters to the courts. Our children deserve better.
2. Expose them to the most appropriate education and services as early as possible. This is no easy feat. Every year we have to do a reality check to make sure that our son is progressing and getting what he needs in school. We just got him Medicaid through the waiver and now this will make him eligible for more services that can help him progress. I know as parents we have to fight for every crumb in the special education and social services systems. We have to stay on the battle field to fight for what our children need to thrive.
3. Give them tools to become independent. I admit that this is a work in progress for us. Our son is only six and sometimes I have to remind myself that he can put on his own clothes. I have to remind myself that yes he knows his sight words but what good are sight words if he can’t brush his own teeth or put on his own shirt? Yes there are times we do these things for him but the goal is to decrease our involvement and increase his.
4. Build a circle of support for our children. I got this idea from a speaker I heard recently and it really hit home. Look around you? Who can you rely on to look out for your child? I am not talking about a guardian here (that is covered under estate planning). I am talking about cultivating friendships for your child. I am talking about exposing your child to social and recreational opportunities. I am talking about finding support for yourself by meeting parents who you can build bonds with.
Do any of these ideas provide any guarantees? No. But this is a good start. They are a good faith attempt to help our children have a chance in a world where the odds are stacked against them. There is no time like the present to start. Let’s get to it.
BMWK: How are you trying to level the playing field for your child with autism?
How do I level the playing field for my autistic son? He is now 20 years old. I could fill the pages of a book explaining how I level his playing field. In short, I help him fake it until he makes it. I do this so that he does not get too overwhelmed, so that his anxiety stays at bay, so that he can learn and grow at his pace but yet not be left behind. Some say all of what I do for him is enabling. Those people are ignorant to what it means to be autistic. My son is entering his senior year at Misericordia University and will be graduating on time with a Social Work Degree. He has a paid internship at a Child Service Center that was offered to him based on his own merits. I had no part in that.. it’s all him. At 18 months he rocked in a corner but now he is rocking it in life. It was a long journey and still continues.
Autism awareness may have grown within the autistic community and their families but it is certainly not present elsewhere.
Thank you for listening.