Friday, October 31, 2008

The Longest Month: Or, Trick-or-Treat at last

Finally, the day has come. No more "28 days until trick-or-treat" or "Nine more nights until trick-or-treat." Sayer's concept of days, weeks and months is still emerging. He understands when a new month occurs, and on the first day of each month he eagerly prints out that month's calendar on

The tricky part is, he thinks that once it is October, it is Halloween; once it is December it is Hanukkah, and so on. We have had to explain that Halloween is the very last day of the month. So, we have all heard the count down shuffle for quite a while.

And this is the first year that we have gotten a store-bought costume for Sayer. Not because in previous years I have labored over the sewing-machine making one [as if!!]. But, because of his sensory issues we have doubted that he would wear one. Instead, we have thrown on him a witches hat or Dracula cape; somehow improvising from the Bin O'Halloween - our plastic bin of aging ghoul make-up, tacky decorations, spider rings and masks.

This year I insisted he needed a costume to get candy, and at Target Sayer agreed to the Doctor costume. Spiderman I'm not sure he gets, but he DOES know about doctors. Earlier this week we had a trial run, and to Sayer's relief his costume has no dreaded snaps, is soft and can be put on over his "regular" clothes. Will he wear it for more than ten minutes? We we reach a milestone? I'll report back.

One Halloween milestone Sayer did achieve is that for the first time he told us that his teacher and class mates would be wearing pajamas today. Pajama Day is his school's tradition to avoid the physical and emotional perils of wearing a costume at school. Sayer told us that he didn't want to wear pajamas, no thank you. Nonetheless, we were excited that he was aware of the option and is clearly "absorbing" what he is hearing in school.

I will have to keep such accomplishments in mind as we deal with the sugar rush that will come during and after trick-or-treating. Up until last year, there WAS no after trick-or-treating, since Sayer would knock on a door, get candy, say thank you and then stop and eat it all before continuing on to the next house. I suppose it is another milestone that Sayer is now able to stock pile and gorge. Ah, progress.

Tuesday, October 28, 2008

Workplace Disclosure and Children with Special Neeeds: A look at some research

Disclosure - my last post talked about how and when to inform people in the community about your child's disability. But what about people in the work place? Do you tell co-workers and Human Resources about your child's disability, and if so, when? Before you are hired? After? And how much do you share?

For those of us with less "traditional" employment, is our decision to work outside of the nine-to-five work world our way of dealing with the disclosure dilemma, by essentially avoiding it? How many of us work at home to optimize flexibility? And in doing so, are we letting potential employers off the hook?

Researchers at the Portland State University Research and Training Center on Family Support and Children's Mental Health have studied what they coin "Dilemmas of Disclosure" for both parents and human resource professionals. Their findings are summarized in the power point presentation: Caring for a Child with a Disability: Dilemmas of Disclosure for Parents and Human Resource Professionals.

This presentation includes some telling quotes from parents on the disclosure issue:

“Honesty with my employer. That has been the main
strategy and working very, very hard when life is
going well to make up for the times when I have to
be out from work.”

“I do try to be up front with selective people about
this. Some people I tell about my son’s emotional
disorder; to others I just say that my son has a chronic
illness that sometimes requires hospitalization.”

“All I’ve been able to do is explain to my employer
the reality of my life with an autistic child. Some have
understood and others have absolutely not!”

These Portland State researchers have also written a comprehensive article on the topic of workplace supports (and the shortage of them) for families who have children with special needs. This research in outlined in Disabilities and Work-Family Challenges: Parents Having Children with Special Health Care Needs on the Sloan Work and Family Research Network web site.

Fellow moms, please weigh in on this. If you are employed at a work place, how do you deal with the disclosure issue, along with the need for flexibility? Those of you with alternative work arrangements, how big a motivation is autonomy and flexibility? And for those moms who currently do not work "for pay" (because we ALL WORK) - would you be more willing or able to work if there were comprehensive protections and supports for employees who are parenting children with special needs?

Wednesday, October 22, 2008

On playing the "disability card": Discuss

Barb over at Awalkabout weblog had an interesting post recently, Have you played the "A" card?, about her experience calling in the "autism card" to get a bit of special consideration and accommodation for her children. Barb asks, is this OK? Her conclusion is that it is, since without some special accommodation her children would miss out on great experiences, such as rides at Disney World. Another point Barb makes is that we parents have plenty to deal with and could use some help from others now and again.

Barb also wrote about telling others her child has autism in response to glares and nasty comments: "And sometimes you just drop it to make the complaining person feel like a heel. (We’ll add up the karma points later.)" Are there any of us who haven't been there, done that?

I had a recent experience where I didn't deliberately "hide" Sayer's autism but somehow it didn't get written down on a health form. Sayer's right arm was hurting last Monday, and since he broke it last spring I took him in to an orthopedic clinic to have it looked at. It was a new place since we had to switch from Kaiser to new insurance ( just when I FINALLY figured out the Kaiser system, but that would be a different post).

When I registered Sayer for services I mentioned to the clerk that Sayer has autism (by spelling it = little pitchers) but I didn't specifically say to write it on his form. Well, about 30 seconds down the hall to the examination room the nurse could clearly tell something was "off". I guess Sayer can "pass" as neurotypical at the playground but not in a busy clinic. Maybe something about trying to locate all the urinals on the premises?

As soon as we sat down the nurse asked something to the effect of, what's the deal? I mouthed the word "autism" to her and she seemed visibly relieved that I was up front; she said "Oh, that's so helpful to know."I got the feeling other parents try to somehow hide or not mention their kid's special needs. I really don't understand why; I agree with Barb that our lives are challenging enough so why not take a "pass" when you can?

The nurse jotted "autism" on Sayer's form, and while it still took an endless amount of time to wait for the x-ray results, we did get some special treatment. It turns out Sayer did NOT rebreak his arm but it may be a growth plate issue so to be on the safe side they opted to put on a cast. Ironically, they offered to put the cast on in the private examination room but Sayer was QUITE determined to go to the "big room" to get his red cast.

All in all, the 2 1/2 hour experience seemed like an eternity, but we survived. So, how about you - do you play the disability card with your children or try to carry on as if all is "normal?" Or does your approach and reaction differ by the situation? Please share your stories.

Friday, October 17, 2008

The Victory of Defeat: Losing a game as a developmental milestone

Last Saturday Sayer and I met up with two other boys on the autism spectrum and their parents at Big Al's to bowl. The bumpers went up and they played. Sayer was most interested in seeing the ball come up the shoot after each play, yet he was the front-runner throughout the game.

On the other hand, his buddy "J" is what his mom calls "A sore winner and a sore loser, both." I had never seen his sore loser side, but as he was in last place he got very upset. Sayer ended up winning the game but wasn't interested in the score, especially as the next step in the outing was to visit the arcade and get overstimulated by the lights, sounds and crowds (goody!). Luckily, the arcade cheered "J" up,too, although he also did a good job of calming himself down.

Given Sayer's limited concept of competition, then, I was surprised and pleased last night when, for the first time, I had to "fake it" when playing a game with him. We were playing "Mr.Mouth" and flipping small plastic flies into Mr. Mouth as he spun around. I got the hang of it before Sayer did and he actually got frustrated that he couldn't get any in. In the past, he has not really cared on way or another.

So, I faked it and deliberately missed most of my shots. Parents of typically developing kids are cautioned about doing this but for us it was a GOOD thing that Sayer noticed my flipping finesse and compared it with his own. I gave him some tips on how not to "over-flip" and he eventually got in. The look of pride and satisfaction as he got those discs in was priceless!

Wednesday, October 15, 2008

Social Support: Do you get it via drinks or e-mail?

How do you get social support to keep going? How much is from face-to-face lunches,coffee dates or drinks with friends? How much is through blogs such as this, e-mail exchanges and list-servs?

For moms of children with special needs it is often easier to interact through e-mail messages or blog comments than to meet up with people in person. However, I don't think that electronic relationships can match those up close and personal.

When I answered a questionnaire for my recent high school reunion, I was asked to name my favorite activity. Jeez - it was hard to pick one. I responded something to the effect of "There are so many, like hiking with my family, and going to see movies, but having martinis with friends is right there at the top."

What strikes me now is that as I was answering this question it never occurred to me to include "reading and responding to blogs" or "watching You Tube videos e-mailed to me by friends." Now that I am back home, in my telecommuting bubble, there are days when I don't speak to another human for hours on end, or even until Jacob comes home from school. Yet I usually have dozens of e-mail exchanges.

And while Sayer has come a tremendous way in his communication skills, our exchanges are quite limited and often repetitive. We can discuss what he wants in his lunch box and if he liked music in school but our conversations are well, pretty basic.

For those of us who have children with special needs, working at home can't be matched for flexability. It is good for me to be there in the morning to get Sayer off to school , as in "there" and not in a preoccupied hurry. Sayer is more relaxed when I am relaxed. But, I need to find more opportunities for human contact on a daily basis. This probably includes the dreaded activity of networking (why does that term suck the life blood out of social interaction?). Any ideas?

Wednesday, October 8, 2008

How I Spent My Retro Vacation

Imagine, if you will, a week-end where you leave your family behind, along with your to-do list, compute, laundry room, and perhaps most significantly, your existing identity as a "special needs mom."

At my 30th year high school reunion last week-end I was not Carol Freedman, the mom and wife who goes to IEP meetings, chases Sayer in the neighborhood, and helps Jacob balances class work, sports, instant messaging and the need to visit on what seems an hourly basis. Nor was I Carol Freedman, the grant writer who creates budgets and crafts project descriptions.

Instead I was Carol Solow- I can't believe it's you! The high school senior plus 30 years who was carefree, funny, a bit gullible and a notoriously perilous driver. What a wonderful time I had. The "gang" I hung out with was all there, and we laughed as we struggled with jewelry clasps (when the eye sight goes...) and watched our cholesterol (egg white omelets at the diner - we HAVE become our parents).

And at the reunion, it was wonderful to see folks I haven't seen in - well, for most, decades. Memory is an amazing thing. Time after time, I was asked "Don't you remember when.....?" and I was like, huh? And again and again I would walk up to someone and say, "I remember when you...." and they would be like, huh? Put us together and all our memories were enhanced and expanded.

It was great to see that the clique walls really did come down. While there were a few people who I greeted who clearly had little clue who I was, there were just as many I couldn't recall who said "Carol Solow! How are you doing." Although we may be a "self-selected" group - people who are miserable may be less likely to attend a reunion- I was amazed at our resiliency. We have survived widowhood, 9/11 (one class mate is a NYFD fire captain; another a NYPD police man), brain tumors (that would be me), and more. But there we were, dancing the night away.

Although the reunion, after party and visit to the diner AFTER the after party were great fun, I had just as great a time the next day at the Mini-Mart street fair in Sea Cliff. The mini-mart is an annual tradition that started when we were teens, I think. As one friend said gazing at the teenagers congregating in clumps, "Remember when we were the punks at the Mini-Mart?"

So there we were, standing on the corner of a closed off street for hours (ouch!) sipping beer and hanging out. We alumni shared even more memories. When things happen so long ago they almost become surreal so it was good to get collaboration that I DID once see Billy Joel hanging out at a bar, and I DID go hear the Police play at a club in New York City [once again, I've forgotten which one...]

Because the reunion was held so close to Election Day some of us spent a good deal of time arguing politics, but in a good natured way. I think the passage of time makes it easier for me to have true affection for people whose political views are the polar opposite of my own - you know, wrong.

What I have learned, now that I am home, is that I need to nurture and keep a little bit of Carol Solow inside of Carol Freedman, at all times. I would love to make it back to the Mini-Mart more often but if I can't, the Mini-Mart and reunion memories will live on long in my heart.

Wednesday, October 1, 2008

30th High School Reunion: Spontaneity or Insanity?

Two weeks ago, if you asked if I was going to my 30th high school reunion I would have said "No way, it's not even on my radar screen." But, that was before I got a call from my longest-standing friend in the world (from kindergarten!), "J", asking if I was going.

No way, I replied. I was just in New York last April. It is 2500 miles away. I've got stuff going on here. But the lure of a free ticket from my VERY generous class mate "S" (thank you frequent flyer) plus a place to stay with "J"'s family, convinced me to go.

Unlike my trip last spring to the East coast, this one is a tad rushed. Last time I made sure Everything Was Perfect before I left. This time, I'll be lucky to remember to pack my pantyhose, wash Jacob's soccer jersey before his next game, and create a simple schedule so Sayer knows when I'll be back home.

But I think the short time frame is a blessing. I have little time to think of the excuses not to go, such as these gems on my high school reunion web site:

Excuse #1: I'm a different person than I was in high school.
Rebuttal: You're not alone, we ALL are! Let's face it, look at our yearbook, we could only have improved!

Excuse #2: I'm overweight.
Rebuttal: You're not alone! Don’t believe me? Please note that no t-shirt sizes are being requested!

Excuse #3: I don't look as good as I'd like. I (choose one more) am bald, have wrinkles, have saddlebags, have grey hair, and no one will recognize me.
Rebuttal: Guess what? You won't recognize anyone either! Don't believe me? Take a look at our yearbook pictures we all look like the "before" picture on an Oprah makeover show! Besides, that is what nametags are for!

Excuse #4: I'm not as successful as I would like to be. I'm not.... Rebuttal: You'd be surprised how much everyone has matured! We may be plump and wrinkled (see excuses #2 and #3) but we're not stupid - we know that money and success don't always equal happiness!

Excuse #5: I didn't know many people very well and I don't talk to anyone from high school anymore.
Rebuttal: This would be the perfect opportunity to change that!

You know what they say about being in your 40s...just when you get your mind in order, your body starts to fall apart!!! The only cliques you'll notice at the reunion will be the sound of your joints as you walk around.
So, if you're not in the best shape of your life, haven't become the millionaire you'd hoped to become, or don't feel comfortable with the way you look for some are not alone!!

Is it true that we never really leave high school behind? I've decided to take the attitude that I am going to this reunion to see my closest buddies from those years. We haven't been together since my mother's funeral 11 years ago so it will be great to be together under better circumstances. As for all my other class mates, reconnecting with them (or not) will just be gravy.

I have been thinking a bit about how to describe my life in 30 seconds, the so-called "elevator speech." Just exactly HOW does one do that? I think I will just wing it. BUT I do have these key essentials ready to go:

a) A killer "little black dress"
b) Lots of business cards for this web site
c) My Ipod survival set, including recharger

So, think of me on Saturday when I'll be dancing to Billy Joel, Pablo Cruise, Boz Skaggs and the last remnants of disco.