When you become a parent, you learn the true meaning of worry and responsibility.
But when you become a special needs parent, that worry and responsibility magnifies immensely. You can get lost, tumbling through the rabbit hole of what ifs, in a world not built for them. And not only are those worries deeper and darker, but also longer lasting, sometimes for your entire life. And then you have to worry and plan for who will replace you if your child outlives you. Who will do the work when I am gone.
Officer Jacob is autistic, and non-speaking. So, the worries I am faced with may be different than another special needs parent’s worries. Will he ever be able live independently? Will he ever be able to have a job? Will he ever be able to tell when someone is mistreating him? Will he ever be able to know when not to follow a direction? If someone tells him to do something that he shouldn’t, will he know not to listen?
That may seem like an odd worry, but hear me out. Officer Jacob has a little brother, about 5 years younger than he is. His younger brother will boss him around like a parent, telling him when to go to bed, when to sit down, etc. And Jacob will follow his directions like he’s a third parent. Of course, his younger brother isn’t going to ask Jacob to do anything he shouldn’t, but what if it’s someone out in the community, and they tell Jacob to do something? Something that’s harmful or hurtful? What if they abuse Jacob.
Jacob will not be able to tell me about it. One of his difficulties is communicating. Jacob does have a device that he can use to communicate, but communication skills are so very multidimensional. It’s abundantly more complex than simply having the words available to you. Communication involves knowing what is said to you, being able to interpret the meaning, understanding body language and facial expressions, and so much more.
If you ask Jacob what he did yesterday, he will not respond. He does use his communication device to let us know when he wants to go to Puzzle Pieces, one of his favorite places, or to Little Caesar’s, another favorite of his. But when you ask him a follow-up question, for more understanding, he will typically respond with his initial request again. When he asks to go to Walmart, and I ask him what he wants to get at Walmart, he will respond with Walmart again.
Did you know that individuals with developmental disabilities have a much higher risk of being victims of abuse? And inability to communicate effectively is one of the factors that contributes to that. Individuals with autism also have difficulty with understanding social rules, which also puts them at increased risk.
This is just one of the fears that reverberates in your mind as a special needs parent. Every parent has this worry, about someone somewhere harming or hurting your child, but as a special needs parent, we can’t just talk to our children, and prepare them for that situation if it ever arises. We can talk to our children, read social stories about what to do, but is that going to reduce our worry? No, it’s not. Because the truth is that it’s not a solution when you have a child who cannot communicate, who cannot judge what is harmful, who cannot relay the events of their day to you.
So, what should you do if you come across a special needs parent, who fell down this rabbit hole… Get in with them. Sit for a while with their worries, their anxieties, their fear, their pain, but leave some room for hope. There is always hope.
Comments