Thursday, November 19, 2009

In the trenches

Mothers of teens and adults with autism are as stressed out as combat soldiers, according to a study published in The Journal of Autism and Developmental Disorders and reported yesterday on the New York Times Motherlode blog.

Researchers followed a group of mothers and their children for eight days, interviewing moms at the end of each day and on four days measuring hormone levels associated with stress. They found the level of chronic stress experienced by these mothers was similar to that of combat soldiers. And the greater the child’s behaviour problems, the worse the mother’s stress.

My son doesn’t have autism, but I have to admit to feeling “in the trenches” this morning when I got a phone call from his school. Ben is in a class for kids who are deaf and hard of hearing in a high school for students with mild intellectual disability.

It was the principal, asking if Ben had mentioned anything last night about an incident that happened at school yesterday. He hadn’t.

Apparently the class and a few staff went to the park at the end of the day. Ben reached down and picked up a cigarette butt. I’m not sure if he did put it to his lips, or was going to, but one of the support staff was angry enough to drag him across the playground and push him into his wheelchair.

Two other staff reported that person to the principal and she was sent home when she arrived at work this morning. Then the police were called and a report was filed.

I was asked by the police to look for bruises or scratches on Ben tonight (I hadn’t noticed any last night, but I wasn’t really looking).

I couldn’t imagine which of the staff had been involved because they all seemed excellent when I met them at a recent parent night.

When the police told me, I could only picture a warm, energetic, motivated woman I thought was absolutely delightful.

I felt horrible for Ben and how he must have felt. I felt badly that he hadn’t tried to tell us what had happened, or perhaps he felt he couldn’t. I wondered if perhaps the situation was overblown. And I couldn’t help feeling sad and sorry for the staff person involved, who I imagined was sitting at home feeling as terrible as I was.

And then I couldn’t help feeling like I wished this wasn’t happening to us, wasn’t something we had to deal with. I couldn't help feeling shame. I knew my son was a challenge, but was he that impossible?

My hands shook and my chest ached. There I was, in the trenches.


If you could only hear my huge sigh, my beating heart, quickened. We ARE in the trenches or at least have been for so long that the trenches are a way of life. I often describe my life living with a child with uncontrolled seizures as one of low-grade anxiety punctuated by bouts of extreme crisis. That would be what living in the trenches is, right?
I can only offer you sympathy/empathy. My hand in your hand. Perhaps a glass of wine or a good beer. Some laughter and meditation. Much love to you...

Thank you for your beautiful message Elizabeth! Your support means so much. On a positive note, Ben and I had a good talk last night. He was able to tell me about what happened and I told him that sometimes good people make bad mistakes and what happened was wrong. On a funny note, he went to great lengths to mimic a person inhaling and exhaling a cigarette while telling me about picking up the cigarette (he uses sign language, so everything is in gestures). He showed me where the person hurt his arms, but said they didn't hurt anymore. Thanks again!

I'm sorry that happened to Ben. Your story brought back so many bad memories from when my kids were in school: the time the principal paddled my preschool-aged son who had been horribly abused as a toddler, the many times they let him run away from school in a blind rage and he'd show up on my porch and the school never even called to see if he came home, the way they would tell me the other kids were nice to him but I heard from another parent at the school that her child complained how mean the other kids were to him. It's good to be done with the schools at this takes so much vigilance and energy to deal with them.

I bet if the researchers tested the stress hormones in a variety of parents, the results would be similar. Elizabeth described it well: low grade anxiety punctuated by extreme crisis. It's too bad that these results don't lead to better support services that might help reduce the stress.

Hi Galen -- Thanks very much for your message. It's disturbing to hear about the experience of your kids. Are they all grown up now?

I know the researchers of the autism study were advocating for better support services to reduce stress.

It would be interesting to see a clinical trial comparing parents who underwent specific stress-reduction treatment (e.g. mindfulness meditation, exercise, etc.) compared to a control group, to see which forms of stress reduction were most helpful.

The same stress as combat soldiers, I believe it. I was busy yelling at Katie this morning because she pinched my boob, again! Katie was having a melt down because it's monday and she has to go to school but I was having a melt down too because I had to deal with a pinching, screaming, crying, gagging 17 year old girl by myself. Sigh.

I'm sorry about what happened to your son. It's scary because we have to trust other people, not just our own children.

Deb -- I hope today is a better day!

I forgot to add in my thoughts above that if they did a study of stress-reduction techniques for parents, respite would be an important one!

Cheers, Louise

Hi Deb,
I'm in a middle of a separation process with my husband. He's asking for so much in exchange to leaving the house to me and my 2 special needs children. All the 9 years I've spent helping my kids doesn't seemed to matter. I've become a therapist myself teaching other kids because my kids has progressed so much that other people are constantly asking what am I doing or how did I do it? Went to school, did training and all without my husband's help. I've built a network of support around me and my kids and other kids and their families. You think the court will acknowledge such hardwork and put a monetary value on that? Not that I'm looking for spousal support. Infact, I've refused it. But I'd like to be acknowledged together with the thousands of mothers (or fathers) who have devoted their time into helping their special needs children or other parents of typical children who have sacrificed carreers and advancement to take care of their children.