Well here we are, mother and son enjoying some quiet cottage days before the hectic pace of September. There’s something to be said for spending quiet times of doing little else than reading, walking, painting, boating, swimming, eating and just being together. This surely would have been something I would have been afraid of doing in the “early autism” years, worried that Adam might not get his “therapy” fill. But the wind, the fresh air are therapy enough for an otherwise hurried life. I’ve always loved to travel and to experience new things, and while I’ve pulled back a bit since Adam’s birth, I also keep trying to take him places. Even if he can get a little anxious, I know he also loves the experience once he is able to adjust and settle down.
Adam wasn’t used to this new and rented place. Like many autistic people, adjusting to new places can be very difficult. It took Adam about three days to get comfortable here. And thankfully, I had the resolve to hang in there with him, to hold him, to tell him it was going to be okay, and to let him do what he had to do. Being a parent of an autistic person is also knowing that it will take a few days for the child to adjust. It’s knowing when to hold back, and how to help them along without pushing too hard. It’s about being very very patient. So, while it started with a lot of tears, you can see here we are now having the summer of our lives.
Cheers to the final lazy days of summer.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
Great little story about real life days you share with your son. I blog on autism hangout with very similar tones. Also, I write articles on real life issues and living with autism for examiner.com. Its great to read and be able to relate to others that are normally feeling the same as other parents, but don’t have many outlets to talk about it :)
- Steve
Steve,
I will check out your blog and thank you for the link. I always think about writing — particularly how to write about children. I know there is a way to express the challenges without denigrating the child. There is a way to be real about it without taking away the dignity and total privacy of the person. It is this aspect of writing that I address in an earlier post on “Writing About Children” — why we do it, how we might rethink the way we do it, and to analyze our own views about autism in the midst of great sensationalization of it that takes away the value and dignity of the person.
Autism, like any way of being human, deserves to be discussed with no less respect. The challenges of the parent in this day and age of autism are indeed strenuous. Being a parent in and of itself has innate challenges. Yet I would like to discuss the real challenges also against the way society thinks we should think and behave — about autism, about parenting and about being human in general. There is no perfection, but we all have to think a little before we write.
Writing about children honestly without writing something they will come to regret is a difficult balance that I don’t think I’ve adequately achieved. The challenges are part of the reality for us and for our children, but the joys are also part of that reality. To write about the joys is not to deny the challenges, yet some will claim it is. Being honest about the challenges without hiding the joys is equally important. In the end, it is the children who matter, but to make way for the children there are those we need to reach whose minds need to be opened to the way we see them, instead of how society would have us see them.
I really enjoy this conversation about the ethics of life writing, especially about children and the vulnerable. I hope it continues on other blogs so we can all think about the writing that is truly helpful, real, and still lends dignity (without understating challenges or overstating joys for the sake of an angle), to our families.
Hi,
First time reader. My 11 year old daughter has autism.
I usually plann lots of activites into summer, old comfortable ones and new ones. Unfortunately this summer we haven’t had the funds due to my husband being made redundant. Social Services stepped in and offered us fortnightly respite away from the home. So Ana is still geting out and about, much not as much as she’s used to.
I am glad that you’re having a great summer!
Hi SeaThreePeeO,
I hear you. Adam and I had to spend most of the summer, save a week, in the city. Yet, we’ve been able to “rediscover” it and we’ve had a good time. We had one week at a rented cottage. And thankfully, the camp he goes to accepts him — he is integrated with a shadow there. So we’ve had luck, but with some pushing for sure. I got Adam into that camp about three years ago now so they are very used to him and love to have him there. This is fortunate.
However, I certainly know of many like families undergoing difficulty in getting their children to camps and other activities. This should not be. All children deserve and have the right to attend camps (with shadows if need be) and go to programs. It is so utterly important. I do not agree with programs that limit the number of “autistic” kids they take (as much as Reach for the Rainbow’s intentions are great, this is the case where camps use the agency as an excuse, IMO, to not take all autistic and other children.
We all have to work and advocate for all autistic children to be included and accommodated. This is our parental obligation. I know it’s tough, believe me. Let’s hang in there together.
Estee,
I’ve found a magazine that’s interested in the article we discussed back in June, but the e-mail address I have is being sent back as undeliverable. If you would contact me so we can schedule an interview, that would be great.