It is interesting how we as parents can lull ourselves into believing whatever we want to about our children. I had thought I had learned the lesson to not take everything the school or the paras say about progress to heart and do a little investigation on my own. Alas I fell back into the trap. Everyone had been telling me that the boys had been making really good progress in the social arena and that they knew how to converse and have appropriate give and take. Well along came Passover Seder and we found out otherwise. Well actually it wasn’t even Seder but a pre-Seder get together that opened our eyes.
It was a family gathering and the boys along with their cousin of about the same age were all sitting at the table. Their typical cousin was gracious, appropriate, outgoing and energetic in her conversations. The boys on the other hand, were one-sided, would yell at each other and totally lacked any conversational sense what so ever. While collegeman did come to the table with props to help in his conversation, which we felt was a good thing; he was not able to expand from what he planned to talk about. HSB was just a boor.
Luckily our extended family (on both sides) is very understanding about the boys and did not mention their behavior nor look askance or give us a hard time. They never actually have done any of the “nasty” stuff that so many families are prone to when facing a child with autism. They have always been understanding and supportive and nonjudgmental. Which actually makes our job in dealing with the boys so much easier. It is hard when you have to fight with relatives, the world at large and your children at the same time.
Well hubby was beside himself. When we got home from the get-together he decided to do something proactive. Besides asking me what they had been learning since neither really compared to their cousin in any way shape or form, he wanted to know what the schools and the paras have been seeing. I told him that all the reports said that they were both doing tremendously. I do think I need to dig deeper definitely. I also was meeting the next day with the psychologist and I told him I would ask her for some recommendations.
The psychologist did tell us that it was a good thing that collegeman had brought the props to help him. Even though he knew everyone from the time he was an infant, it still was different than his normal routine and the noise and interactions could be confusing to him. The fact that he brought the props to help him in conversation showed that he was trying to compensate for a situation that quite frankly made him very nervous. When I mentioned this to hubby he said he did think that it was good too. That he was really concerned though about how they couldn’t have typical give and take conversations and that HSB kept yelling and interrupting.
Now I know we should have prepared the boys for the situation better, besides just telling them where they were going and who was going to be there. Perhaps a verbal social story with strict rules and ideas would have helped. But honestly, it is a family situation in a place they have gone since childhood with fewer people than normal when we have a family get-together. Really didn’t expect the inappropriateness that came along with the day. I suppose the question becomes, when does it really end?
We know that in transitioning into college or later (hopefully) to law school there will be work involved. If collegeman can get a job this summer there will be work to be had in the transition. But when do the social stories and transition issues end when they are going into a situation with people they have always known, to a place they are familiar with? I don’t know and I think that is one of the real new issue we, as parents are trying to parcel out ourselves. When if ever does anything become easier? Not just for us, but really for the boys. When do things become easier for the boys? When will they be able to go into familiar surroundings with people they know and not be so overwhelmed and maybe enjoy themselves? Will it just happen one day or will they have this forever? Will they be able to compensate on their own or will they always need someone to hold their hand? Honestly I think the unanswered question is really what keeps both hubby and myself up at night. (Yeah I know all of you can relate quite well.)
Just as an interesting aside, when I first started my journey into Internet support groups and blogging I came across a forum for autism support. When I told one mother what I still did in the way of therapy and support for the boys, they were midteens at the time, her response was that her daughter was 5-PDD-NOS dxed, and she planned to be finished with all that autism support and therapies by the time her daughter was in her teens. I wished her good luck with that. Needless to say whenever I would post on that site again none of the parents acknowledged what I wrote. I guess the reality that autism can’t be cured didn’t sit well with them. I even got castigated by the administrators because I used hurtful language when I said I "hated this cure crap," and that autism can’t be cured. I guess according to them, the only ones who were entitled to their opinion were the followers of Generation Rescue and Jenny McCarthy. Needless to say I left that forum. It wasn’t worth my time. I figured that they would all learn the hard way if necessary and it wasn’t my place to teach or help those that wouldn’t listen. I do feel sorry for those children however when their parents realize that they will always be autistic.
Now back to the main story: It is interesting because they do tell me in school that HSB is quite appropriate in his classroom conversations and his ability to stay on topic. He doesn’t argue with anyone, except those nasty boys in his resourceroom and that he is generally very mild mannered. (In fact the psychologist told me that they have been working on proper conversational give and take, so go figure what happened.Psychologist seemed a little taken aback, and wants to figure out what happened too.) HSB does take issue with his brother but I think that is typical brother-on-brother nonsense. In fact at our Seder the next day, the fighting that ensued and the inappropriate actions from both of them would have lent one to think that they were both still in their terrible-twos. It was only hubby, the two boys and me thankfully. So I don’t think it was their being overwhelmed by the situation or the newness of a social context. Collegeman was back on the “I am no going to do this because I don’t believe in God” kick and HSB would then get upset and they would fight. Honestly I should just videotape the whole thing and instead of putting myself through the mishegas every year I should just replay the tape. Get the crap over with and move on to the learning part of the evening (Part One, Part Two, Part Three).
The very apparent problem that we face is the fact that the boys do not know how to interact in a conversation that they are just not interested in. They do not know to not bring up caustic subjects and what might be considered caustic. They do not know how to not cause tension in a conversation and interjected at inappropriate times and at inappropriate decibel levels.
While we are going to talk to the school, the psychologist, the paras and the life skills coach to find out what is really going on, hubby did come across these websites that have some basic instructions on how to have a conversation. Have Google will travel, that is hubby. Listen the man found out how to build that Murphy bed (here, here) on line so Googling definitely seems to work out well for him.
I think the reality is that everyone, typical and autistic, needs to practice these skills. The Art of Conversation comes easily to the very few and it is one part of becoming an adult that is essential to success. I don’t think you need to have an autism spectrum disorder to have an issue with this skill but having an ASD does make it just a little bit more challenging.
Meanwhile at last night’s dinner, hubby went over the rules he found and we practiced as they ate. It was not a long session, maybe ten or fifteen minutes. But we think if we do this at every meal that we sit together eventually it will sink in and eventually they will know how to be gracious, engaging and endearing. This will enable the world to see what we see in them underneath all that adolescence and aspergers. Then they will be given the chance at the future that they are entitled to just like everyone else.
Finally before someone comments or asks…. No I don’t think the world needs to accept them the way they are. There are accommodations (which are necessary and a civil rights issue) and then there is giving up and quite frankly self-centered cowardice too. As I have said before, there are rules of behavior that are deemed appropriate and not appropriate. It is not Ok to give up and to say its everyone else’s problem. Just because it is hard doesn’t mean you don’t do it. Because it is hard means you work harder. It’s part of being a member of society to learn how to get along appropriately with other human beings. Remember if its worthwhile, which appropriate social interactions happen to be, it is worth doing well.
Until next time,