Play dates, birthday parties, sports and days in the park are supercharged with emotion for me. Emotions like; fear, embarrassment, frustration, loss and sadness, because these are the places where I can’t hide from autism and we are among strangers. These are the places where, as he stands next to other children, it is so apparent that he is not the same. These are the places where I feel like a GIANT MAGNIFYING GLASS is hovering over his head, following him and making his challenges stand out larger than life. These are the places where his differences and not his wonders seem to stand out so much. These are the places where I can’t hide from what he is not, and these are the places where I most feel his loss. These are the places where I know he doesn’t really have any friends and I am reminded that he will probably never marry or enjoy intimate relationships with people. This is where I most feel the loss of a so called “
I know it’s hard to understand why a play date is so scary. To understand you have to look at the whole picture, both the parents and the children involved.
The kids are not sure what to do, and the parents, even the ones who are trying really hard to be nice, are afraid. Some kids try to play with Nicky, some just stare and others even ask me what is wrong or why he does what he does. For the most part the kids are curious and cautious. So often I find that if I talk to the children and explain "Nicky" they say "Okay" and they try and play with him. Occasionally there are kids who don't want to play and they also don't want their friends to play, but I usually take the approach that those kids simply did not want to play with Nicky and that had little to do with autism.
We get all kinds of responses from parents. I’ve encountered parents that had no idea what is wrong with Nicky so they would just slowly steer their child away. Some are very judgmental and it’s clear they are thinking “can’t you control your child”. On occasion these parents have been known to give me advice on parenting. I’ll never forget the mom who said “Nothing a good spanking couldn’t fix”.
More common are the parents who just want to keep their child safe - and feel that being around Nicky somehow would not be safe - they find creative ways to separate from him. They encourage their child to play else where anywhere just away from us. They encourage their children to not stare, as they stare themselves. I’ve received so many uncomfortable forced smiles that seem to yell “I’m so sorry but your son makes me really uncomfortable and I don’t know what to do, so I’m taking my child away ”. There is the occasional parent who is familiar with children with ASD who strikes up a conversation, acknowledging the situation and seeking to somehow connect with me. However, even this parents leaves without asking if we can have a play date.
At one point it was failed play dates that could have driven me into isolation with Nicky. I was so tired of feeling other peoples fear, frustration and my embarrassment that I just wanted to be around people who understood. It felt so good to be around people who were non judgmental and forgiving – but deep inside I knew that was not what was best for Nicky.
Play dates from school – Very rare, actually never until last year. There are several reasons for this. First, until recently (he’s 9 now) Nicky would never ask to have any over, because he wasn’t interested in play dates. He wasn’t really interested in any of the children. Although the children liked Nicky and were kind to him, they did not exchange phone numbers or develop typical social interactions. So, I never called parents from school and they never called us. Second, Nicky did not attend his home school, his school mates were not our neighbors, so developing relationships with school kids was almost impossible for us.
After 4 years at his school he has developed a friendship with a wonderful little guy named Aaron who just loves him and wants to play with him. We have play dates, we go on outing and Aaron is a wonderful child who loves Nicky and just wants to spend time with him. So there is hope!
Notes to myself and others
Don’t let people’s ignorance keep us isolated
Watch Autism Everyday when I feel alone and need encouragement to keep going
Remind myself
· I am not a bad mom if I get embarrassed
· If people knew better they would do better
· Be forgiving, remember how I was before I knew about autism.
· I have the right to go anywhere with my son
· Nicky is a great kid and he deserves to go anywhere and see everything
· Nicky benefits from being in the world
· That he is a child first, and he has autism second
· It takes practice for anyone to do anything better…
Socializing is no exception
· Pay attention to all of his progress – especially the little things
- Learn how to manage my own frustration around Nicky’s behavior
- Get help with outings from local agencies if necessary
- Take family members along for moral support when needed
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