Sunday, June 29, 2008

Random thoughts on summertime, inclusion, and special ed "seclusion"

Summer time and the living is ...? How has your transition to summer been this year? Sayer just completed his first week of day camp, and has told me on more than one occasion that he wants to go back to school!! I think he misses the routine, and being the kids in his inclusion class, his "peeps."

Some parents think that when children with disabilities are around others like them they become "more" disabled; i.e. kids with autism who are in a class with other kids with autism become "more autistic" and take on new stimming behavior.

When Sayer was younger I felt that way, too. But my feelings about inclusion vs. segregation have shifted over time. Now, I think that Sayer feels a sense of belonging and calm when he is with his special ed class mates. Being with his "regular" class mates is great, too, but I don't think it has the impact on his self-esteem as being with his group of special needs kids. Also, as time has gone by I've come to believe that Sayer's "autistic like" behaviors stem from what's going on inside him, not what he sees around him.

I'm curious what other moms think. Have they found that their kids imitate others with disabilities? Do they mimic typical kids more? Have your views on inclusion and special ed seclusion changed over time? Please share.

While Sayer is missing school, I am too. Oddly, I have felt a kind of homesickness for his teachers - I miss the back and forth feed-back and encouraging words. Like a reader "K" says, teachers can be a bit like family. It's a bit frustrating to start at ground zero and explain how Sayer "works" to the staff at his day camp.

Maybe I need some kind of "operating manual." Does anyone have any ideas for tools for communicating caregivers, camp staff and school staff about how to most effectively interact with our kids?

Wednesday, June 25, 2008

Shut Up About Your Perfect Kid - you think it but this web site says it

Admit it - there are times when we've all wanted to shout "Shut up already about your perfect kid" when a "typical" mom is going on and on about little Bobbie's 4.0 GPA, soccer championship or violin recital. Well, there actually IS a web site named Shut Up About Your Perfect Kid and it is a hoot. It is a site "for parents of special and other 'imperfect' kids designed by 'imperfect' parents."

The two sisters who started this web site and launching what they call the Movement of "Imperfection." In their own words:

This long-overdue movement is allowing parents of "non-perfect" kids to come out of their messy closets and talk about the accomplishments of their children. With bumper magnets like "My Bipolar Kid Loves Me AND Hates Me," we're wearing our badges of imperfection and telling the world with humor and grace, "We're not always O.K., but that's O.K." " I encourage you to check it out - clearly we are not alone!

What do you think? Are you ready to join the movement?? Should we start our own chapter??


Friday, June 20, 2008

A Disabled Swimmer to make us proud

There was a fascinating article in the New York Times June 18th , A Disabled Swimmer's Dream, A Mother's Fight, about Kendall Bailey, a boy with autism and cerebal palsy who was almost disqualified from the American Paralympics team. The author of the article, Alan Schwarz, was on Talk of the Nation last Wednesday and talked about his experience researching and writing the article. He clearly took the time to understand this family and really "get" how important competing in Bejiing is to the boy, Bailey. He also writes beautifully about Connie Shaw, Kendall's mom, and her fierce advocacy for her boy.

The American Paralympics committee questioned whether Kendal was sufficiently physically disabled "enough" to compete in the Paralympics. Intellectual disabilities alone are not a classification for the Paralympics. Ultimately, the family appealed on a national and international level and Kendall be going to Beijing and likely setting new world records.

If you have a few minutes and don't mind if you start of get weepy (I recommend not driving!), listen to Alan Schwartz describe how important swimming is to Kendall. Here is the National Public Radio link.

Did the U.S. Paralympics committee act out of ignorance? Did they act out of malice? Discomfort about developmental disabilities? Is there an "Us" vs. "Them" vibe between the developmentally and physically disabled? I'd like to know what you, dear readers, think.

There has been a lot of talk recentlyabout how we have become a multi-racial society with blurred lines between black, brown and white. Similarly, can our society no longer have sharp lines between phsycial and intellectual disabilities? Again, what do you think?

Tuesday, June 17, 2008

One Mother's Voice of Experience

A fellow blogger, Allison, at WomanBloom send me this essay "Post partum Blues Plus 20: A Voice of Autism," written by Claire Luna." Claire writes about raising her son with Asperger's Syndrome, with the perspective gained from twenty years down the road. I think you will find her story interesting and perhaps a bit familiar.

Claire's essay is one of many in The Voices of Autism, an anthology published by LaChance publishing. This publisher is connected to the non-profit organization The Healing Project, which is devoted to supporting persons with chronic illness and their caregivers. The Healing Project web site is a good starting point for caregivers of all kinds, including those in the special sandwich generation.

Friday, June 13, 2008

Finally - A good excuse to shop!

The end-of-school year madness is further complicated by the question: Should we "gift" our kids teachers, teaching assistant, et al? Who? What? I have heard other parents say "Well, they get paid." Yes, that's true and no doubt not enough. But, I do think that special education professionals go way beyond the call of duty. And when we are lucky enough to encounter principals and bus drivers who are supportive and inclusive I think it is important to recognize them, also.

In that spirit I went shopping this afternoon. I am proud to say that I shopped locally in downtown Camas, at two wonderful stores, An Uncommon Gift and Paper Lantern. An Uncommon Gift did a great job gift wrapping - one less thing for me to do and something they wouldn't do at Target. And I found some quasi useful and fun gifts - gifts that don't require any watering or planting [hint: those are my favorite kind!]

That's all for now, as I read about Angelina Jolie in Entertainment Weekly when I got home from shopping, instead of blogging. Do other readers give gifts? Make them? Any good ideas?

Tuesday, June 10, 2008

End-of-school-year chaos: Whine train boarding now

A recent article, "End-of-year obligations drive parents batty" featured Liz Lange, maternity clothes designer, and how she and other working mothers struggle to balance year end festivities with her children with work commitments.

The article quoted Boston psychologist Catherine Steiner-Adair, who believes the situation has gotten worse over the years. She said, "It's this crazy culture we have now of anxious parenting. This nervous generation of parents is signing kids up for way too much stuff. And so we have too many rehearsals. Too many games, too many practices, too many cookies. Too much celebrating!"

It's nice to know that I am not the only frazzled one, but I still wager that moms of kids with special needs can match and raise one on moms of "regular o'le" kids. I am trying NOT to sound like a whine train, but we have IEP meetings to contend with, and concerns about our children's school placement next year (it's not as simple as "You will be in third grade with Mrs. Miller).

And the anxiety, yikes! So many of our kids internalize all the static around them - the excitement about the end of the year, the buzz surrounding field days, field trips and so on. Schedule changes, even for fun, can be hard on children, especially those on the autism spectrum. Our kids don't need to be over-scheduled to feel overwhelmed.

Sayer always gets amped up around mid-May, until school is over and he has started his summer routine. Last year, he compulsively repeated one phrase (I won't say what it is, I don't want to jinx us) so many times I got chest pains and had to retreat to a friend's house in Portland for the last few days of school. Knock wood, it hasn't been quite as bad this year but still no picnic. Add into the mix that I am now doing some consulting work and there you have it, a stress cocktail.

OK, so the whine train has come into the depot PLEASE reassure me that I am not alone! Send your comments and survival tips.

And to step briefly into the Gratitude Station, thanks to Mr "D" for guiding me through ordering and setting up my new computer system - I now have two screens and that REALLY makes blogging easier. Thanks also to dear "G" in LA for his assistance with software.

Thursday, June 5, 2008

A Different Sandwich Generation: Caring for Children with Disabilities AND Aging Parents

The "sandwich generation" with a special needs twist. Are you a member of the club [if I was REALLY clever I'd have a picture of a club sandwich here]?

My friend "J" is has two teen/young adult children on the autism spectrum at home, along with her elderly mother who has dementia. "J" told me that she has run into women she knows from autism support groups at support groups for children of parents with Alzheimer's and dementia. Clearly, "J" is not alone. How she and others do it, I don't know. To try and find out, I searched on the internet for information on and tips for caring for special needs children while also caring for aging parents.

I found plenty of information about the impact of caring for both children and aging parents while working, including research by Portland State University researchers Margaret B. Neal and Leslie B. Hammer.

There are many articles and blog posts on finding care for aging parents, in general, such as A Place for Mom in Midlife's A Trip.

And there are a number of scary and depressing articles on the plight of aging parents of children with disabilities, who are worried about how their children will fare once they are gone.

AND some articles on the impact of multiple roles on the well-being of midlife women . Overall, it seems that the more roles a woman has, the greater her overall stress caused by such role strain. On the plus side, strong social support can mitigate some of that stress.

But information specifically on the stresses a being a"sandwich" parent who is caring for children with disabilities - I didn't find, well, anything. That isn't to say it isn't out there. Help, anyone?

I would like to hear from those of you who are experiencing this phenomenon. How does it impact you and your family? Have you found any resources to help? Have you discovered any "plusses" to this situation? I'd also appreciate any web links on information on this topic. Hopefully we can start a resource list on this blog, maybe called A Different Sandwich Generation?