Ever had one of those days where you just feel inadequate? When you just don’t know the answers? With autism parenting, those days seem to occur frequently, but it’s not all bad. So what does the real life of autism parenting look like? Here’s the good, the bad, and the ugly. My own reality show, but in print instead.
Autism Parenting: The Good
As the parent of a child with autism, as with any parent, you must take the bad with the good. That said, appreciating the good parts of autism parenting is essential, both for the parent and for the child. I came way from a workshop a while back about raising a child with a disability, and the speaker, Kathy Snow, said something really important. She said that too often, we identify our child as their disability, naming it first before their names. Even worse, we tend not to spend a whole lot of time on their positive attributes, despite the fact that there are so many. When you talk about your child, say his or her name, talk about three things you appreciate about him/her,and discuss the child’s likes and dislikes. Allow other people to see, through you, the good in your child. I’ll come back to this at the end. First, let’s get the bad news out of the way.
One of the hardest things about parenting a child with autism is the uncertainty. After two weeks of almost perfect behavior, one small change causes a huge setback. Today, his teacher had an IEP meeting,which meant the class had a substitute teacher. In addition, the class has a new student and this new student requires more attention. Whereas usually my son gets his need for attention and support met by either his teacher or the Teacher’sAssistant, now his time has been divided between them. Naturally, all these changes, especially those that took attention away from him, led to him making poor choices. Poor choices that led to my getting a phone call at work to come and get him. The thing is, the older he gets, the less tolerant society and the community are of his behaviors. As a result, I risk losing my job going to pick him up from school and leaving my own students behind with whoever can cover for me. I can sometimes feel quite inadequate, but I know we’re still working on bringing out the best in him.
Maybe one of the important things to remember is that you are not alone in dealing with the ugly side of things. No matter how much we reinforce positive behavior, take away toys and other valuables, and attempt to understand behaviors, they crop up quickly and without much warning. When we go out in public and he takes his clothes off, people keep a wide berth around us. When he says his new favorite phrase, “Oh Shit,” even though we watch our language at home, we look like the worst parents ever. Then, when he hits, kicks, and scratches others, it makes him look like a mean-spirited child. It’s unfortunate that so many people see the worst side of my son, because there is so much more to him than all that. Those are the things he does to cope with his need for structure, attention, routine, and comfort. They do not encompass all of who he is.
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In John 8:32, the Bible says, “the truth shall set you free,” and as often as this quote is used, it seems infrequent that we pursue the actual truth. What are the truths I know about my son? Well, I know that even though we go through many rough patches, no matter how badly I sometimes handle his meltdowns, he always comes back to me with love in his heart. If I need a confidence booster, he’s there to tell me how great a mom I am. In fact, according to him, I’m “the best mom ever,” but I’m also pretty and sweet and I make him proud. When it comes to his brother, Squeaker has no competition for the most protective brother. He will defend him and protect him always. If you need a cheerleader, he’s there. If you need a hug or a kiss, he’s ready to give one. And he has a mind like a steel trap. Once the information gets received, it never leaves his mind. My son has an inquisitive nature, a good heart, and a delightful sense of humor, not to mention a large amount of gratitude for the small things in life.
Tell me your truth
I had a nice pity party earlier today because I felt lost, inadequate, and lonely. Autism parenting is not for the weak-hearted. In fact, you must ready yourself for this task because it requires you not only to have the courage for advocacy and the strength for getting through hard times, but to have a heart large enough to hold all the love. So tell me your truth. Shout it loud and proud. Tell the world about the wonderful world of autism parenting.