Saturday, May 31, 2008

Why does everything have to be so bifurcated??

Am I the only one that feels bifurcated - split into two? I am one person when I am on the neighborhood cul-de-sac filled with kids, parents, baseballs, scooters, bikes, motorized toy cars and lacrosse sticks, ensuring that Sayer doesn’t hurt any one by accident or have a fit. I am another person when I am at Jacob’s high school research symposium, visiting poster presentations about recycling and biodiesel; socializing with other parents and talking with teachers about potential funders for “green” school projects.

I am one person when I am at an IEP meeting advocating for Sayer’s education program, or arranging for inclusion services for his day camp. I am quite another sipping martinis with a buddy in a Portland bistro, or on the dance floor with my cousins at a family party on Long Island.

Sometimes I wonder what it would be like to sip martinis in an outdoor cafe with the neighborhood moms and dads on the cul de sac, where I would not have that veneer of hypervigilance I have when with Sayer in unstructured settings. Or what it would be like to go to OMSI with Sayer and one of Jacob’s teachers. Or go see the “Sex and the City” movie with Sayer’s teacher. Or take one of my New York cousins with me on a lecture on behavior strategies for kids on the autism spectrum.

Clearly, all these people would see completely different sides of me. in different settings and situations. But, would that be good or bad? Do these separate identifies protect us, define us, limit us or liberate us?? I'm not sure of the answer - are you?

Wednesday, May 28, 2008

Nobody said it was easy; No one said it would be so hard

If you copy from yourself, is it plagerism? Discuss.

I'm having a busy week and instead of nattering on about how busy I am (always annoying) AND in spirit of the start of summer tv rerun season, here's a rerun of an earlier post, from Febuary:

Motherhood: Fact vs. Fantasy

Nobody said it was easy

No one that it would be so hard

Coldplay, "The Scientiest"

On February 28th I caught a National Public Radio show, “World Have Your Say,” a call-in show produced by the BBC. The topic was “Does your society gives you an idyllic version of what motherhood will be and if that is the case, is there a taboo about women speaking out honestly about the downside of being a parent?" The show was a follow-up to a Women’s Hour radio show on BBC that morning that elicited literally thousands of calls and e-mails that “opened a Pandora’s box of maternal ambivalence.” These moms admitted that although they love their children their often find mothering boring, exhausting and lonely but find that speaking out about their reservations was “not done.”

The show featured a panel of women from various parts of the world who talked about their motherhood challenges, and the importance of family and friendship support networks to find relief from non-stop parenting. Moms and dads called in from around the world to say that parenting is more isolating and difficult than they imagined, but they were reluctant to admit that to others.

Two bloggers from the United States were also called and they gave some great examples of the pressures women in the United States feel to comply with “perfect mother” expectations. One mom gave the example of the attachment parenting movement and how it creates onerous expectations for mothers – to carry their children constantly and to shun the use of lifesavers [in my mind anyway] such as strollers and cribs.

Let’s say that Mothers of special needs children constitute their own country. If the BBC gent called me as a spokeswoman I certainly would have boatloads to say!! I think that parents of children with disabilities are expected to be saints of sorts. We may be a bit more off the hook for raising academic or sports superstars, but we have share the expectation that we should always put our children first.I think we also feel unique pressure, especially when our children are young, to involve our children in a whirlwind of therapies and interventions. We don’t’ often even get the luxury of complaining that our children are watching too much TV or are on the computer too much. Instead they are being shuttled to therapies or engaged in play therapy at home.

Expectations in our “special needs country” are also different because society posits that we – as mothers or fathers - must be special since we are parenting such special children. I have heard more than once that Sayer was meant to be my child because I am so well-equipped to be his mother. Well, I always appreciate positive feed-back on my parenting but Jeez, that does create a bit of pressure, don'tcha think? ”We all have our rough days and our rough moments and it is helpful to admit this and talk about these times to others. We should not feel we must hide any evidence that we fall short of society’s ideals of special needs mothers.

Tuesday, May 20, 2008

Marble Mania: Extreme Brain Gym

As Carrie in Sex and the City used to say at the beginning of an episode "Have you ever wondered why..." . Well, have you ever wondered why people will pay good money for subscription online programs to sharpen their brains as they age, like My Brain Trainer, while there are parents who would gladly let them hone their brain power by putting together complicated gear toys with over 300 pieces??

At Goodwill last Sunday, Sayer spied a box of Techno Gears Marble Mania Extreme. He was pretty excited; he found manual gears there once and each time we go he holds out hope he will find gears again. And this time he did, for only $2.99. Sayer loves gears AND marbles so what a find. We got home and low and behold it was brand new!! Each of the 330, individually numbered pieces were still sealed in bags. Lucky me.

I decided that putting this together would be like a Brain Gym session for adults. It would force me to use logic, follow instructions and focus on a spatial project, rather than words. This type of work is recommended in Carved in Sand, a book on midlife loss of memory and attention. And it has; just the act of repeatedly differentiating between five green connectors only millimeters apart in size has made me feel smarter already.

I'm still not sure, though, if I am working smarter, not harder. I have been making slow progress, with only about 200 more pieces to go. The problem, though, is that I can't do it with Sayer around because he doesn't want to wait until it is completed to use it, and I have other things to do during the time he is in school or asleep.

That's what made me think of the brain matching program. Midlife or elder folks out there who need to keep sharp - how about some real life practice rather than cross word puzzles, sudoku or My Brain Trainer? I bet there are many parents like me who are short of the time and patience to work through 45 page manuals for temperamental techno toys, or even construct a run-of-the-mill Hot Wheels track.

If only it were practical to start an online registry to link those who need to challenge their brains with those who's like to go out to lunch and return with a completely built toy ready for their kids to enjoy or break. But, alas, I imagine there would be logistical problems, as in "Honey, who is this gentleman with the magnifying glass and pipe?" "Oh, just the man who came over to build Johnnie's marble roller coaster."

At any rate, I am determined to finish this Marble Mania Extreme set on my own before school is out. I'm trying to think of it like learning to knit; the more you practice the easier it gets. Wish me luck, and remind me how much Sayer will love it when it is done. Just don't tell me that bargains are not always such bargains. I think I know why it ended up at Goodwill in such pristine condition!

Friday, May 16, 2008

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." 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.

Tuesday, May 13, 2008

Good Enough Mom; Good Enough Birthday Party

Sayer’s birthday is coming up and one of the first things I did after I returned home from my trip was to confirm plans for his party. So, I sat down with H, the aquatics and party coordinator at our health club. As we went over the list of logistics, it struck me how much more easygoing I am about this party than I was when my older son, Jacob, was younger.

This time, when H asked me if I wanted a pirate or sports themed table cloth, or just a color, I didn’t give much thought and said “Sayer likes red; make the table cloth and balloons red.” My next thought was “I’ll go to the dollar store and get some kind of plates with a theme – or not.” I laughed and told H that I have been planning birthday parties for 14 years and by this point, I tend to just go with the flow.

Becoming a Good Enough Party Planner is an accomplishment for me. Among Dan and Jacob, I am notorious for going overboard in party planning. Although Jacob doesn’t remember his party when he turned two, Dan has never let me live it down. We were living in Kansas City at the time, and it was late July. Late July in Kansas City is VERY hot and humid.

For reasons that escape me now, I decided to have a “treasure hunt party.”I bought plastic treasure chests and wrote each kid’s name on it. Then I got dozens, well maybe hundreds, of plastic coins and favors and hid them in the sand box. Each kid got to hunt in the sand box for the hidden treasure [OK, junk from China], and put the treasures into their personalized treasure box, which had a little key and all.

What was I thinking? For two year olds? They were probably more interested in eating sand than gathering coins. Looking back, my primary recollection is of steamy air pressing down on our porch, with me oozing with sweat and wondering “Why aren’t we inside with our air conditioning?” Don’t even ask how the ice cream cake held up.

We moved from Kansas City to the Northwest a few years later, and whenever anyone asks why I tell them that we couldn’t stand the weather – the dreadful summers and bitter cold winters. And then I add, “For example, we had this birthday party and it was like a sauna ---.” On the plus side, the boy who moved into our house probably found surprises in the sandbox for years to come.

Fast forward to today. Jacob no longer has parties, and I think the years of Sayer’s parties are dwindling – I hope so; we’re running out of ideas. Nowadays, I don’t care much about the party’s theme. I am more concerned with insuring that the needs of Sayer’s friends will be met - such as arranging locker room logistics for boys who need their mom’s help to get changed. I no longer sweat the small stuff – neither literally nor figuratively. But, I admit, I will undoubtedly go to the Dollar store for party favors. Just ONE per guest – oh, but I have to figure in siblings. Old habits do die hard!

Does anyone have any birthday party stories - horror or not -to share? I'd love to hear them. To read more about the "Good Enough Mother" idea, check out the web site Rene Syler, of Good Morning America: Good Enough Mother: A refuge for the perfectly imperfect mother. Rene has also written a book, Good Enough Mother: The perfectly imperfect book of parenting. I've seen it at the library but haven't read it. I guess that makes me a perfectly imperfect blogger.

Thursday, May 8, 2008

From SoHo to So Tired

I did a lot of planning before my recent trip to the East coast, but I didn’t give much thought to coming back home. As Wallace says in Wallace and Gromit’s “The Wrong Trousers,” it’s been a touch painful on the re-entry.

Clearly, there are dos and don'ts for readjusting to life after a solo vacation. I found these out the hard way. Remember Goofus and Gallant in Highlights Magazine? [I can still remember the smell of those doctor’s waiting rooms while I read Goofus and Gallant’s Do’s and Don’ts, along with “What’s wrong with this picture?” But, I digress]. Goofus, the rude rascal, did the "do nots" while Gallant, that polite, thoughtful boy, was the "do" guy.
Below are some “dos” and “don’ts” for moms coming back home to their families after a trip away, particularly moms who are of a “certain age” and have children with special needs. As you can guess, I have been a bit of a Goofus.

DO: Arrive home early in the day so you can’t get your bearings and rest. Don’t even think about checking your e-mail or reading through all those school memos and notes. That way you can be bright and cheerful when the kids come home from school.

DON’T: Arrive home on a flight that lands at 5:00 pm, which is really 8:00 p.m. for your body, and try to listen eagerly to all the news from home while fighting sheer exhaustion. Check e-mails, school notes and so on, right away, not the next day like you told yourself you would do. Achieve maximum overload.

DO: Recognize that you are not 24 any more and that getting used to a new routine will take time and energy. Realize that you will need to readjust to the baseline noise of a household with kids.

DON’T: Beat yourself up about wandering around in a daze the day after you get back and not writing a blog post as planned.

DO: Be sure that you do not schedule any stressful meetings within 48 hours of returning home. Give yourself ample time to prepare for any such meeting.

DON’T: Agree to attend an IEP meeting two days after getting back, especially when you receive the IEP draft the day before.

DO: Remember, if you have a child with a disability, that they will be excited to see you and may trot out their “special behaviors” in honor of your return.

DON’T: Expect said child to be independent and well-behaved for you as he was, apparently, during your absence. Do not take it personally when your older son tells you “So-and-so was an angel with Dad.”

DON’T: Dwell too much on those vacation days of waking up late, enjoying old friends and family, eating out constantly, and rediscovering your shopping gene.

DO: Be grateful for the friends, family, fresh air and great coffee of home.

Friday, May 2, 2008

Recommended web site: Disability in the Family

Disability in the Family is the web site for Lisa Lieberman, a counselor and speaker whose specialty is Living with Disability in the Family. She has expertise in Asperger's and Autism Spectrum Differences,Parenting Children & Young Adults with Disabilities, and
Adults with Chronic Physical Disabilities and their Spouses.

I mentioned Lisa'a book A “Stranger” Among Us: Hiring In-Home Support for a Child with Autism Spectrum Disorders or Other Neurological Differences in my previous post about the importance of caregivers. Her site has full copies of great articles Lisa has published, as well as annotated links to other resources.

I encourage you to explore the Disability in the Family web site, as I continue exploring New York. I'm having a great time visiting family and old friends, and enjoying the sights, sounds and food. Real New York pizza; home made Italian ices - yum. And I am REALLY enjoying a week off from all those family management tasks. I don't mean being with my kids and husband, but taking care of all those details - the sending notes back and forth to Sayer's teacher, filling out summer camp registration forms, making lunches, and so on.

Dan is doing a great job of holding down the fort, which is likely why I have NOT felt guilty about being away. So, a big shout out for the Husband!!