There is no cure for autism. I just want to put this out there because every other week we hear about a new cause or correlation between autism and everything from c-sections to maternal age. Since my son Angel’s diagnosis is not going away, all I can do is try to level the playing field for him as much as possible. This means that I need to treat my parenting journey as a marathon and not a sprint.
There is nothing more sobering than seeing a father holding onto his grown autistic son’s hand as they cross the street. Why? Because he knows what will happen if he doesn’t. Yes my friends, our kids will still need us as they get older. I am not saying that typically developing kids do not need their parents when they get older. I know I still need my mom. The truth is, some of our kids with autism will always need assistance with toileting. Some of our kids will always need to live at home. Some of our kids may never speak. Some of our kids may develop aggressive behaviors. Some of our kids will always need additional care. Where does this leave us as caregivers? How can we strengthen ourselves for the long haul?
I am not going to act as if I know all the answers. I am learning as I go. Angel is my only child and we all know that when our children are diagnosed with autism, we are left on our own to “wing it.” Over the years I have learned that if I learn the system and use the system as it was designed, I can make our lives somewhat easier.
This means making sure that Angel has the support services he needs. This means giving him a chance to still be a kid and not bombard every waking moment of his life with therapies. This means making sure he is in the right educational program. This means giving him 100% always.
It can be tough. I have had my days of frustration. Those days when calls are not returned and balls are dropped because someone I depended on did not do their job. Still, Angel is my son and if I do not get in the trenches and work, he will be left in the cold.
I have my moments when I feel vulnerable and I cry. It happens at the times I least expect. Like last week when Angel and I were waiting at a clinic for him to have an evaluation. As I looked around me, I saw so many older caregivers with young adults in the waiting room. The caregivers had a look of fatigue in their eyes. Yet I could tell that they were dedicated. Tears welled up in my eyes because I was looking at a situation in real time – that could be me one day. Tears welled up in my eyes because the uncertainty of our future hit me like a tidal wave. Still I refuse to give up. The marathon continues…
BMWK: What is your tried and true tip for caring for a loved one on the autism spectrum?