A social event or more like teaching?

     Taking my boys out is viewed by others as a social outing.  People with typical children always seem to make this assumption about us when we take our children out. Taking children out in general is work, but special needs kids or autistic children can be a whole lot of work and stress that typical kids just don’t have in a social situation.

     I have found that most people have no clue what it’s like to take one kid on the autism spectrum out in the public, let alone two.  Yet, we have people make these seemingly simple plans including us and our children, knowing partly how difficult it can be but not really seeing the big picture, or pretending that we can fit in and socialize like everyone else.

     I think most people think that it’s no big deal to go out into a large crowd of people, or even a small group of people, with our kids.  It can be, however, a big deal. For instance, if it’s a small group of 5 and all those people are new or unfamiliar with my sons, it can become a stressful event for both of them.  This, in turn, creates anxiety and hyperactivity in both my sons. Which, also means increased stress for us and running all over the place watching the kids, to protect their safety.

     Meanwhile, others at a social event, are oblivious to the fact that we are actually doing work to help our kids interact appropriately in social areas.  People in general do not understand the lack of social skills these children have. Furthermore, they don’t understand that people with autism have to be taught the so-called art of social interactions, in various places over and over and over to remember the how to’s of appropriate behavior in any given situation. 

     There are some people who choose not to take the information that you give, to help better understand the social impact autism has on your family.  Others, however, just cannot understand that children with autism, really don’t have the ability to learn social skills quickly and remember how to act. These core social skills must be learned over and over in different places, with different people to really incorporate them into their lives.

    So our typical social outing is not social for us at all. It’s all about putting our kids out there and helping them manage anxiety and stress during a new situation. Preparing them with social stories, which help develop a sense of what should and should not be done, said and not be said, in a variety of different situations.   Often, it means developing a picture schedule and allowing them to look at it days ahead of the planned event, to have the anxiety levels decreased prior to throwing them in the midst of a new land.

     Sometimes the situation or event causes an increase in stimming behaviors, like rocking, hopping and hand flapping, which just adds an obvious odd response to the child.  If we are prepared enough, our oldest son, Hunter, will talk with others in an appropriate way. However, his favorite topics or pass times, are often something he will perservate on. This is not often interesting to others and he ends up playing something computerized by himself.  He is doing more pretend and group activities at school and play dates, but it still requires major preparation and work to get it all put together. Much of what we do is planned to watch and redirect to appropriate socialization.

     The whole social event is rather stressful for Tristan, our youngest son. He is less social than Hunter is, so he tends to run around exploring everything, touching, smelling looking at everything in site.  He will smile and make eye contact with people, but generally, he is constant motion, unless there is something particularly interesting to play with.  To him, it’s very overwhelming, and he would rather explore and avoid people if he is in a crowd.

     Tristan is our busy little bee. He is always exploring and climbing at home, so throwing him into a party or crowd is a major change for him. No one seems to get it that he has to be moving most of the time.  It’s doubled when he is stressed.  There is no eating with the family or playing games or chit chat for hours. This is a learning and safety situation for him.  He has no fear of anything.  He is a flight risk and an injury is bound to happen if he is tired.

     Sometimes, I think people have a naive belief that we are there just to have a good time. There is no good time when you are teaching. It’s very hard on us and ten times as hard on kids that don’t know how to act socially. 

     People always look at you like why can’t you control your kids? It’s not that simple.  If someone dumped you into a different country, where no one understood you and you couldn’t communicate a desperate need, wouldn’t you yell, shout, fall into a fit in the floor, to try to get help?

     Essentially, that is what our kids do.  You put them in the place they are not comfortable in with new people, smells, environments and it totally disrupts their routine.  The sensory aspect alone is overwhelming at a party for a typical person, let alone someone with sensory processing disorder that is often associated with autism.  Kids will act out any way they can, when they are not comfortable and are unable to express what is wrong with words or interact the way they want to with peers.  If you were in Africa or China and lost and hungry, wouldn’t you do whatever you could to get food? 

     These kids need to be better understood by the public, family, friends of family. They need to know why social skills are key in teaching the children to lead functional lives as adults. There may be hundreds of failed play dates or family functions, but you must teach over and over for them to feel safe and give them the appropriate ways to deal and act in social outings.

     There needs to be a better public awareness about the lack of the “social gene” per se in autism.  Being tolerant and not judging people would be a great start.  No matter where we are in public, if one of my children has a meltdown/tantrum, everyone is looking and you know most are thinking that you can’t control your kid.

     We took our oldest son, Hunter, to an amusement park. This was an event totally planned for him to learn how to wait and be patient.  Of course, we wanted him to enjoy himself, but it was a learning experience as well.  I have a special T-shirt I put on him that says “I have autism and I suffer from the intolerance of others”. 

     He was very patient and tired by the end of the four hours at the park. He exceeded our expectations of appropriate behavior.  However, we knew that his exhaustion would get the better of him, when it was time to go home, the dreaded meltdown ensued.  There were many people staring and looking at his shirt, some understood and looked away with pity in their eyes. While others looked at us with disgust.

     We were not phased by the looks because this was a major milestone for him.  He lasted that long in a park being as patient as he was. He had learned that in time, he would get to ride and waited patiently.  It was a wonderful step toward many more positive teaching skills in his future.  We had fun watching him smile and enjoy himself.  Even though we knew the meltdown would occur, it was a very positive social experience for us all, but it was only after much teaching that we achieved it.  So social event planning is a must and trudging through the stress of it pays off, after many unsuccesful attempts.

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