What do you want to know?

For Hannah

It is evening and I am finishing the dishes. An ordinary weekday night, with no meeting or class or event we must attend. I am going to settle in with a favorite TiVo-ed television show or maybe a book or maybe email a few friends after the dishes are loaded in the dishwasher. Hubby has a game on and it might be nice to join The Kiddo and The Middle Boy and The Youngest and watch it together. The phone rings and all hope for any of that is gone—it’s an “autism” call.

I was a local Autism Society of America chapter president for over six years and took these calls on an almost daily and weekly basis. It was more often when something about autism was in the news. Now, I am retired from the chapter but I still get an occasional call. I feel obligated to at least point the caller in the right direction, whether giving them information about the current support group or an agency or a physician who might be helpful. My phone number is out there, on some outdated website, but I don’t want the caller to be frustrated with a worthless call—I want to help them in some way.

After explaining I am no longer active with ASA as a chapter president, I tell them I still may be able to help them and ask—what do you want to know? The question or concern is addressed and then I explain I am the parent of an adult with autism and they have further questions. One of the reasons I started writing this blog was to answer some of those questions.

Often, they want to know about a school district or a physician and I can help them quickly. Sometimes, they want to know where to get help for a grandchild or a niece or nephew or are moving and want to know the best place to live in our area. They want affirmation of what they are doing—I try not to judge but do try to be honest. They want to know how to handle a school district or what recourse they have if they are not happy with a teacher or treatment. I try to be honest and try to be calm. And I try to be supportive. Sometimes, they just want someone to listen to them.

Many want to know how Hubby and I have stayed married when the divorce rate for couples with a child with autism is so high. Its luck, I think, and how we look at The Kiddo in the grand scheme of our family. We are all on the “Kiddo Team” not on the Hubby or Me team and we do not blame each other. Blame can swirl around us and our family but we do not blame each other and are united. We respect each other after a long time of dealing with autism and feel much the same way about a lot of things. We work through the problems together and that has also brought us closer. We go out together regularly and when our kids were really young, had a “date night” with movies and popcorn or music on our stereo. We try to be a couple and not just Kiddo’s and Middle Boy’s and Youngest’s parents. Make time for each other because if you don’t, there won’t be time.

Others want to know about our other kids and how they are doing. Both The Middle Boy and The Youngest have Masters Degrees at this point, with more education probably to follow. They both have had their own issues and we worked through them just as vigorously as we did for The Kiddo. They are kind, responsible young men and are more mature and understanding than many of their peers by having a sibling with a disability. Are they resentful of all the time and energy we had to spend on The Kiddo’s and not on them—maybe. But during The Kiddo’s  illness a few years ago, they both spent time in the hospital with him and helped us talk through the treatment we should use. We came together as a family and it’s obvious they love him unconditionally. So I think I can answer this way—they are doing well for the most part.

Some want to know if I have any life outside of autism and I tell them I have always worked around my own career and I do what I can to stay involved in my profession for my own sanity. I’ve worked at least part time since The Kiddo was born. At various times, I have worked full time or had three part time jobs or been in graduate school and have worked in Hubby’s office as well. Now, I tutor NT kids, teach an arts specialty class of adults, speak about art and autism and am a moderator for my professional society’s website. I have been supportive of  those in the arts with developmental disabilities and have been helpful, through my professional organization, to facilitate dialogue between both of my worlds. I take the occasional class as well to keep my own “chops” current. It is a matter of stepping away from autism so I can be fresh and not resentful, myself, rather than any selfishness on my part. How can I be there for The Kiddo if I am soul-sick and needy? My art and years in the arts are part of me and I cannot give them up, even for My Kiddo.

I am not as involved in autism advocacy as I have been in the past simply because I don’t have time. I choose to do what makes me happy now and where my talents lie, whether helping a choir of disabled adults from New Jersey when they visit our state or telling others about our life with The Kiddo. We have always tried to put a face on autism to help others understand and this has become my passion.

The parents who call me by mistake also want to know—does it get easier and the answer is “yes.” You have to be willing to do everything you can for your child and then be at peace you DID EVERYTHING you could, no matter what others say to you. No guilt for whatever happens because, despite what some may tell you, you really can’t control the outcome. Most all children with autism get easier to live with and work with and some may even have some degree of independence, but some do not. You have to be okay with that and know it may be a possibility.

We are still here, still fighting for our son and others like him. We have more time in our lives for things other than autism and get more sleep and are able to be a bit freer so we are a “success” in that regard. And I hope that gives people hope. But we will always live in the autism world.

So, what do you want to know?