Thursday, May 17, 2007

Why Families with an Autistic Child Need Many Mother's Days: A Brief Follow-Up

Sher, the mother of an adolescent boy with autism, wrote a heartfelt message in response to the survey question asking how often parents went out with their spouse or a friend for pleasure. (See article with the survey question here and an article that includes survey results here.)

"Parent supports have not fully been explored, except for the occasional ‘venting group’, or the oft-spoken advice to 'take time out for yourself,'" Sher wrote. "But being a parent of a child with autism is to live in the ‘fight or flight’ mode every day." She continues:

We give 100% of our selves, 24/7, as though every moment is a crisis. Desperation drives us to find out what this thing called autism is, what causes it, and what can be done about it. When my son was born in 1994 until 2002, when I burned out on autism therapies, there was no going out for me, no time alone with spouse (much less by myself)... I resented my husband because he could go to work, my other children for the demands they made on me, and my son with autism most of all, because I didn’t know how to help him.

I had to teach myself how to go out alone or with another, and drill myself that enjoying myself away from my children was OK. Why did I think it was so selfish? Finally, I figured out that going out occasionally actually made me a better mother, not less of a mother. And it is better to give yourself permission to do good things for yourself than living in that nightmarish isolation, driven to be a crazy person by something called autism. Sher


Maddy said...

The trouble with 'going out' is that you need to leave a responsible adult behind in your place.
That some one needs to be highly skilled and experienced with autism as well as be able to cope with additional typically developing children.
Find me someone that can 'baby sit' two autistic boys and one typical girl and I'll skip out the door without a care.
Even if that person could be found, the gallon of petrol and the $2:99 coffee would be too extravagant after paying the hourly rate that this individual could justifiably charge.
Best wishes

Susan Senator said...

Oh, you are so right,Mcewen. Spot on.

Michael Goldberg said...

These are great points, and I wonder if we can come up with a list of suggestions to get around some of them. Time of day, for example, when kids are in school; working with autism schools and programs and organizations to beef up the supply of available babysitters/helpers. More after-school and weekend programs. And financial aid. Thank you for writing. Michael

Irene said...

Wow! I can relate to Sher and mcewen fully. It has taken us awhile to get over the "guilt" and now that we are more willing to go it's the difficulty in finding a sitter. So far the sitter/children experiences have been positive but we do try hard to leave late in the evening, 7:30 or 8:00 if not later. This way no one is really awake for too long. They've had dinner & baths and really we just set up t.v./movie time until they drop. It does make for late date night and often we only have enough energy to catch a movie or dinner but never both, but a little is better than nothing. Sometimes we just hang around Barnes & Noble and enjoy reading grown-up books (NOT dealing with diets, Autism, ADHD or parenting in general) in the quiet. Our best sitters have come from the after-school program our typical son attends. They are young, energetic college students and since they work with children many have studied (albeit mostly in books) "low-incidence" disabilities so they are not completely unaware of the issues we face. Thanks for keeping up this site!