Inclusion - it's not just for kids....

My last post, Can there be perils to over inclusion??, talked about inclusion and exclusion of our kids with special needs. But, it's not just our kids but also us who experience inclusion or exclusion among peers.

As other moms take for granted the accomplishment's of their children, we marvel at the small, often unnoticed strides of our own. When our kids "lose it" we never know if we will receive understanding glances and an offer to help, or disapproving stares. Often, we can feel on the side lines and on the margins.

The author of the blog wrongshoes.com - a mother with Asperger's syndrome writes about feeling on the outside of a group of moms in Open letter to the chatty moms at the gymastics class. I found it a wonderfully written snap shot, and I imagine we have all been there at one time or another - perhaps over and over!

I know that for me,sometimes I find comfort and "normalcy" when I spend time with parents of "ye 'ole typical kids," while at other times I feel like an impostor. For example, last night I went to a parent meeting for Jacob's high school magnet program, directly from dealing with a tantrum of Sayer's. Partly it was a relief to debate the merits of science internships versus engineering summer college programs, but I also felt somewhat detached. Part of me just wanted a martini, to be honest. Luckily, I had one after with a fellow magnet mom (brilliant idea "DW"!).

I guess I'm still dealing with that feeling of bifurcation I talked about in my Why does everything have to be so bifurcated?? post last May. Wow, that was like, six months ago, and I still haven't resolved my ambivalence! Why is it that definitive answers came so much easier when we were in our twenties and thirties?

Feeling included? Excluded? Please share all.

Society Standards of Normal: Listen to the Music Within

Can a person be arrested for being “ugly?” According to the movie Music Within, this could and did happen in 1971 when there were “ugly laws” in about 20 other cities which stated that a person could be asked to leave a public place if they were deemed “too ugly.”

I have not seen Music Within yet but a reader, P, recommended it as a great story of how the Americans with Disabilities Act was created and passed. According to P, “In the movie, and in real life, a man with cerebral palsy wanting to order a pancake breakfast in honor of his birthday was asked with his friend, a man with hearing impairment, to leave and both were put in jail overnight. The movie has great music of the 70s and lots of humor. If you check it out be sure to listen to the real Richard Pimental speak in the special features section.” The movie is available on Netflix, and the Richard Pimental character is played by Ron Livingston (the office drone star in the cult classic Office Space).

The whole idea of being arrested for being “ugly” is fascinating yet disturbing. Who defines “ugly”? Who sets and maintains society standards for “fitting in”? And do these standards vary by class, rural vs. urban or economic factors (uh oh, sociology alert!)?

In our own experience, in general we have encountered more tolerance, acceptance and welcoming among so called "working class" and "rural" folks than among so called "urban professionals." I know I feel less tense about Sayer fitting in and not being ostracized at a small-town county fair than I would at a concert at a children’s museum.

Indeed, the worst offenders I have encountered are the Portland hip parents – you know the organic baby food and hemp onsie set. One such mom at Ben & Jerry's on Hawthorne Ave. ("hippy-ville" as Jacob calls it) got downright nasty when Sayer got a bit too close to her crying toddler. And I was "right on it" - telling him it was not his job to help the boy, that is the mom or dad’s job, and so on.

In situations like that I'm not sure what to do or say. I know that families can order business cards that explain that their child has autism and briefly describes its symptoms. They can hand out these cards in public in situations like the one at Ben & Jerry’s.

But I have resisted that idea, maybe because it defines “normal” as not having autism and thus having autism as “abnormal.” I think that such a clean-cut dichotomy over-simplifies things and enables people to simply say “Oh, that explains it” without contemplating their reactions to “behaviors” or considering the value of tolerance.

On the other hand, I did meet a suburban mom recently who was purposively seeking a day care/pre-school setting that included children with disabilities so that her “typical” kids could learn to play with such children. Maybe what is celebrating diversity to one parent is exposing your child to taboo weirdness to another.

What do others think about society standards of beauty, ugliness and fitting in? Let’s start a discussion.

Midlife Moms on the Margins? Hot day, Hot Links

Here we are in a one day heat wave and my ability to write insightful original material seems to be melting along with everything else. So, I'm going to brazenly copy an idea I read on another blog (but sadly don't remember and can't credit) and do a "Link Love Friday." MidlifeBloggers.com was recently started by blogger byjane, when she noticed that most women-oriented blog communities are focused on younger women, not those in midlife. Those of us who commented in agreement are now the nucleus of this group blog. The posts are interesting and fun, such as Menopause Has Stolen My Brain!, by Jan's Sushi Bar.

For a more serious look at the challenges of striving for work/life balance when your family includes members with disabilities, read babs post "Approaching equilibrium" in her Awalkabout's weblog. The comments alone with reassuring you that you are not alone. At the end of the article is a link to an article in the Seattle Post-Intelligencier about the struggles of one family affected by autism.

Finally, through that article I came across a blog for "alternative' special needs families, called My Baby Rides the Short Bus. The blog is an "information page for upcoming anthology written by parents of children with 'special needs' who identify outside of the mainstream" The authors are also compiling a resource guide and are looking for "favorite resources that help to empower us and treat us respectfully as parents/caregivers."

The My Baby Rides the Short Bus blog got me thinking about how the concepts of "mainstream" and "marginalization" are so subjective. Just the words bring back ghosts of sociology past. My family is mainstream, I guess, since we live in the burbs, are a "typical" nuclear family, and we are not poor. Mmn - but are we marginalized by definition because we have a child with special needs? And am I out of the mainstream because I am a midlife mom?

Whew - too much social analysis on a hot day. But I am curious what you readers think - are we "marginalized" or not? And is having a child with special needs enough of a link to forge friendships with parents with values and world views different from your own? Let me know what you think. I'm off to guzzle some iced tea. Have a great week-end, all.

Parks & Recreation Inclusion: Isolation Buster

Parks and Recreation inclusion programs are vital survival tools for persons with disabilities and their families. They provide opportunities for fun and a sense of belonging. The Vancouver Clark Parks & Recreation inclusion program provides inclusion mentors (aides) and other accommodations that enable all children and adults to participate in their activities.

Sayer has gone to a Parks and Rec summer day camp for the past two summers, and has also gone to their winter break camps. In these camps, Sayer has gone on tons of field trips in the community, and is treasured by the camp counselors. It's wonderful to see the counselors eyes light up as give him a grand welcome each morning, rather than a look that says “uh,oh, will he cause trouble?” He has also taken gymnastics classes and rock climbing classes – these classes give our Saturdays some much needed structure.

Unlike schools, Parks and Recreation programs serve our children throughout the life span. Teens, adults and seniors with disabilities are all welcome, and such programs provide important respite for parents of older children who need a break but want their children to do something more rewarding than stay home with a caregiver.

But enough words, for a real look at the inclusion program watch this brief inclusion video of the Parks and Recreation web site (look for the "View the Inclusion Video" link). I am a member of the Access to Recreation Steering Committee that guides this program, so feel free to contact me with any questions.