"Born to Deal" or Bruce, you are still The Boss

Dear Bruce,

I would love to go see you at the Rose Garden tonight. I'm a big fan from New York, from Back in the Day. Warm nights hanging out by the Shore - you were talking about me, right?

But I'll be home tonight listening to my " Bruce Springsteen & The E Street Band Live in New York City" CD instead. Maybe I'll turn off the lights and wave my cell phone, just to be there in spirit. It isn't that I can't afford or procure a ticket, or because I can't find child care. For you, Bruce, I'd overcome those kind of obstacles.

But you see, Bruce, a few years ago I lost all my hearing in my left ear and now I have to be - ugh - practical and preserve the hearing in my right year. And I love you too much to kid myself that I could go to the concert and wear an ear plug - and keep it in. I don't have that much impulse control. One note of "10th Avenue Freeze Out" and out it would go.

Have a great show - you are still The Boss. I hope you and Patti enjoy Portland. Here's a little "parenting special needs kids" homage to your classic "Born to Run." Rock on.

Carol


"Born to Deal" (sung to the tune of Born to Run )


Every year we sweat it out on hard seats at our kid's IEP meetings
In the middle of the night we're obsessing what will happen later on
Will they have a place to work?
And what about housing?
Can we find that,too?
Baby, this disability thing rips your heart from your chest
It's exhausting, it's inspirational
If you want to know how it feels
But parents like us,
Baby, we were born to deal

Oh, oh oh, oh, oh, we gotta keep it real
'Cause parents like us
Baby, we were born to deal

Our Own Private Bell Curve

Adaptive skills. Reading skills. Vocabulary. Math skills. Grasp of language concepts. Social skills. Conversational skills. Sensory profile. Auditory processing. Vision. Articulation.

Yesterday was Sayer’s 3-year evaluation to determine continued eligibility for special education services. He passed! The meeting went fine and his team gave some promising information about his progress, but it is always deflating to see your child’s scores on the low end of the bell curve.

How nice it would be to have an assessment that would place your child firmly on the right side of the bell curve – moderately high to high. I decided that such an assessment will exist if I create it. So here is the 16 item Sayer Andrew Capability Assessment:
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SAYER ANDREW CAPABILITY ASSESSMENT

Skill Items That Can Be Accomplished Always/Usually (3 points each)

Can walk three miles on a dirt path without stopping

Can hike seven miles with periodic rests and snacks

Will eat food prepared on a camp stove

Can climb ladder and go down water slide ten consecutive times

Can shop at Costco without having a meltdown in store

Can remember which street light in the neighborhood is missing a light bulb

Can hula hoop for at least two minutes

Can find print icon on any computer and use repeatedly

Knows exactly where to find Baby Einstein videos at public library

Knows when his shirt is slightly wet right before the bus comes in the morning

Can identify that a crying baby is sad

Can play Wii bowling

Can set the table using “I can set the table” place mats


Skills that can be accomplished Sometimes (2 points each)



Shop at Costco and not have a meltdown after leaving store

Use walking feet at swimming pool

Keep hands away from a crying baby

Sayer’s Raw Score: 45
Sayer score is in the 90-95% percentile
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I invite all of you to create an assessment suited to your own child’s unique skills and abilities. It would be great to share them – maybe we can start a Capability Assessment Database!

They say I don't pay attention but I said "No, no, no!"

I have a dear friend I'll call "K" who is a 50-something physician and mother to two teenage boys. Ever busy, K nonetheless prides herself on being hip and keeping up with the latest music and fashion. K recently discovered Amy Winehouse, a young "white soul" singer from England with a smash album, Back to Black, with one of K's favorite songs - Rehab , with the chorus "They said I had to go to rehab but I said no, no no."

The other day K dashed into Borders to buy Winehouse's latest CD, on her way to an hour's drive on the freeway. She went to the Amy Winehouse section, grabbed a CD that listed Rehab as its first song, got on the freeway and popped her CD into her car player. She heard the familiar Rehab introduction and waited eagerly to sing at the top of her lungs. And waited. And waited for words that never came. That's when K looked more closely at her CD and realized she had bought the "Smooth Jazz Tribute to Amy Winehouse." Words - not gonna happen.

K told me this story and played her CD for me. True disclosure: I am not a smooth jazz affection ado. After I stopped doubling over in laughter, our conversation went like this: "I can't believe they put the Smooth Jazz tribute CD in the Amy Winehouse section not the jazz section." "Yes, that is like putting the 'Kidz Bop sings the Beatles CD' in the Beatles section not the children's section." "I should go back to borders and tell them that, but I'm too embarrassed." "Don't be embarrassed, just do it." "But, really, I can't believe they put it in the Amy Winehouse section."

K is like most of us, too busy doing too many things to pay full attention to one thing at a time. We get embarrassed and hesitate to share our goofs with those outside our close circle, which is why I suspect this kind of thing happens to folks in midlife more than we know. My suspicions are confirmed by Chathryn Jakobson Ramin, author of Carved in Sand: When Attention Fails and Memory Fades in Midlife. This fascinating book, written in a fun-to-read style, explores the role of neurology, biology and stress in midlife forgetfulness and diminished attention. The book details the author's various interventions to combat her own "spaciness" and offers suggestions for improving your memory and focus. Ramin also takes a riveting and at times hearbreaking look at the factors that can contribute to Alzheimer's, along with current research aimed at warding off its effects.

Cathryn Jakobson Ramin's web site has some good information on midlife memory and attentionissues, including quizzes on how your particular brain works. This ABC News link has a chapter excerpt. I've listed an Amazon link for the book in my sidebar. If you don't have time to read, it is available as an audio book. For locals, you can try to find it at the Camas Public Library, where I got my copy. Now, if I can just remember to return it.....

Broken arm, autism style

When I wrote my last post on the travails of day light savings time I created a new “tag” or category for my posts – “things that just stink”. Little did I know that I would have my next post would fit into this category so perfectly.

Last Thursday, Sayer broke his arm. As breaks go it was the “good” kind – just above the wrist, no bones out of place and so on.  Through it all, Sayer has been quite the trooper. He cooperated when we took him to Kaiser; was able to follow directions and sit still. We were treated well throughout; thank you Cascade Park Minor Injury Clinic.

In the “Isn’t it ironic?" department, Sayer was invited to a pool party set for the next day. I told him he couldn’t swim because he couldn’t get his arm wet. He wasn’t thrilled but accepted it by saying “No swimming, eat cake instead.” So, he sat nicely and watched his friends swim, had cake, got his party bag and we left. Such a change from birthday parties of lore when he WASN’T injured but was too sensory overloaded to deal with the party routine.

At the party, the wonderful hosts of the birthday boy told Sayer that when he got his cast off he and their son would make a date to swim together at the same pool. Naturally, as soon as we got home Sayer was anxious to know what day he could swim again. Since I thought the doctor said he would be in a cast for six weeks, I counted six weeks on the calendar and gave him the number of days until he could swim.

Unfortunately, I later found out from Dan that the doctor said Sayer would be in a cast for six to eight weeks – I guess I blanked out after the words “six weeks.” So, now Sayer is counting down the "days until swimming" but that day may come and go and he may still be in a cast. Uh, oh, I forgot the autism counting rule – always add more hours, days, weeks as a cushion, since these kids can be pretty rigid. I’m guessing that if Sayer isn’t ready to swim on the day circled on our calendar we will be doing some serious compensation involving ice cream and OMSI.

So, yes, when a child with autism breaks his arm it pretty much just stinks but I can think of at least three positives:

1) Sayer is mastering left and right, i.e. “I broke my left arm”
2) Sayer has learned to count backwards, i.e. “39 more days and I go swimming.”
3) Sayer has learned that taking a shower with a produce bag rubber banded around your arm isn’t THAT bad.

Still looking for those daylight savings

Springing forward this week has been a spring towards exhaustion. Sayer has not adjusted to the new time and has been going to bed later than usual but, alas, getting up at the same early hour.

Sayer measures the passing of time by when the street lights around our house go on and off. This is one of his obsessions that we have been waiting over a year for him to get over. Sayer insists on not getting into his pajamas or having a shower until "it's all dark outside." Getting ready for bed once it got dark worked great in the winter, since he would be ready for bed at approximately the same time as he ran out of energy. By 7:30 or 8:00 Sayer would be tucked in and listening to a CD with the lights out.

But thanks to daylight "savings" time, this week Sayer won't settle down until it is dark. He is running closer and closer to empty and we are seeing some of those "behaviors" that have been hibernating this winter.

Curious to know more about the link between daylight savings time and kids with autism I did a google search and found a great post from a blog called Autism is a journey. The mom who writes this blog has a great list - The Top Ten Reasons Daylight Savings Time is a farse. I encourage you to check it out. And try and get enough rest!

I have jumped the fashion shark

It is official. I am no longer cool. My “previously enjoyed” clothes have been rejected by a store clerk who has more ear piercings than I have hands and feet. Talk about humiliation!

It all started a few years ago when I combined trips to shows at Portland Center Stage [a super form of respite I highly recommend] with visits to Buffalo Exchange. I would bring bags of clothing that no longer fit me - either they shrank, I grew, or both. Buffalo Exchange is a used clothing store chain that “recycles” up-to-the-minute fashion by buying and reselling items. Unlike consignment stores, Buffalo Exchange examines clothes on-the-spot, and offers either cash or store credit.

On my previous trips, at least half of my items were accepted, and I received store credit in return. It was a win-win for sure, and I found some great, fun casual duds. But last Sunday NONE of my clothes were accepted. Ah, the indignity of having a hipster store manager tell me “We’re passing on these but thanks for coming in.” Is it time for Coldwater Canyon and Charter Club? Elastic waistbands and Naturalizers ? Yikes!

Despite this setback, I nonetheless sifted through the Buffalo Exchange racks, in the hopes of using up my remaining credit. After trying on various shirts, pants and jackets, I became increasingly frustrated. I couldn’t find anything that fit well and didn’t make me look like I was trying – unsuccessfully – to look like I was 26 again. I had this odd feeling of déjà vu and recalled that I felt this way the LAST time I tried to use my credit. I had always thought of shopping as fun, but it was starting to become an unwanted body image experiment.

That’s when I decided the time had come to match what I wear to where I’m at. While inside I am still a 19-year old buying carpenter pants in the East Village, the rest of me has to leave Buffalo Exchange and Urban Outfitters behind. I am ready for Chicos and shoes that don’t cause me to writhe in pain after walking two blocks [Sofft suede mules, I’m talking to you].

MORE magazine has a useful column with tips for midlife dressing called “What to wear the rest of your life.” I am going to start paying more attention to that one! The columns can also be found on-line. I also suggest this rule of thumb: Only shop in stores where the clerks are no more than ten years younger than you.

But wait, Mom is still working on those Independent Living Skills

Ah, those Independent Living Skills our kids need to be self-sufficient. There is no surer way to bring on anxiety than to look at the list of skills that our children with special needs should master before they move out of the house and into a supported living situation.

At the Families Transition Series meeting I attended last week, we received a hand-out of Independent Living Skills that children need to work on to make the transition from living at home to living on their own (with supports). When we received this list, my friend sitting next to me commented that her daughter in college still has not mastered the entire list. It’s a useful list not only for children with disabilities, but also for all adolescents and young adults.

Taking a closer look at the list today, I see that there are a few items that I haven’t mastered yet, either – at least not all the time. I have read that for women, going through midlife is somewhat similar to experiencing adolescence, so maybe we moms need a refresher course on Independent Living Skills, too.

So, here is an annotated sampling of the items on the Independent Living Skills handout we received, with comments on how both Sayer and I are doing on building these skills.

INDEPENDENT LIVING SKILLS

Personal Care:
Gets adequate sleep

- Sayer aces this one; thank you gods of somnia.

Eats nutritious meals

- Carol needs to work on this (what food group is a Luna bar?).

Personal Safety
Says “NO” to others when appropriate

- This is an “emerging” skill for Sayer.

Knows five people to contact for help

-Carol can do this; you gotta have friends .

Social Skills
Leaves other people’s things alone

- Sayer knows to leave his brother’s Nintendo DS alone (or else, but that's another story).

Recognize other people’s needs and makes room for them

- Carol does this, sometimes too much!

Meal Preparation
Shops for food

- Sayer helps Dad with this; exposure to Trader Joe’ is a good first step.

Cooks simple meals

Carol can do this, emphasis on simple.

Allowances & Money Management
Budgets money

-Sayer is just now working on coin recognition, a building block.

Comparison shops

-Carol does this on-line - who knew this was a valuable skill!

Emotional Maturity
Recognizes other people’s feelings

- This is one of Sayer’s goals at school; he’s got “sad” and "mad" down pat.

Knows how to nurture self

- Carol knows how; implementation is sporadic.

Expression of Anger
Recognize signs of anger in self before “blowing up”

- Sayer is using a “Five-point” scale to identify his escalating emotions.

Knows how to express anger constructively

- Again, Carol knows how, implementation is sporadic.

For a full copy of the list without snarky comments, contact Darla Helt, Coordinator, at the Clark County Parent Coalition. And try to fit in a bubble bath - you'll get points for personal care AND nurturing yourself!

Mothering and the special needs services maze

Last week I attended the “System Navigation 101” Family Panel on Transition, one of the "Informing Families Transition Series" presented by the Cark County Community Services Developmental Disabilities Program in partnership with ESD 112, the Washington Initiative for Supported Employment and the Clark County Parent Coalition.

This session was chock full of information about government programs that serve the developmentally disabled throughout the life span. Maybe too much information – after the session I was somewhat slack jawed and overwhelmed.

Until now, I thought that the hardest years of parenting Sayer were the early ones – the initial diagnosis of autism, the behavior issues, getting him on track at school. Since pre-school we have been focused on early intervention, IEPs, education and inclusion goals. In the past year or so Sayer has fit into the groove of school better than before; there have been fewer meetings, and the ones we go to have been pleasant and productive. But, alas, I am realizing I don’t have the luxury of getting complacent because the future is calling.

In public school it is a given than children with special needs will be accommodated, one and all. There are “Child Find” evaluation sessions to actively identify young children who qualify for services. Yet as our children turn 18 or 21, the path is less clear. What I am rapidly learning through my venture into the transition maze is that resources are limited – for supported housing spots, for supported employment spots, for financial assistance programs for housing and health care. Family members must take a proactive role in ferreting out services, and applying for these services at certain times -such as before or after your child turns 18 or 21, or as soon as possible/yesterday.

Luckily, I have the know-how, personal contacts and time to pursue available options for Sayer – although the planning process is still daunting. I worry more about other parents, like the mother of one of Sayer’s class mates who told me “People keep telling me to apply for DD but I have no idea what that is or where to start.” In her case, I was able to get her a packet of information, but for other parents out there ……

After the “Systems Navigation 101” session I chatted with a teacher who is a member of the core group that obtained funding for the transition series. We agreed that spreading the word about transition planning is quite a challenge. As I have observed with early intervention and school services, the parents who are able to garner the most for their children are often those with “service capitol” – the education, time and ability to pressure educators and therapists for services their child is entitled to. Similarly, I am concerned that the families with the most service savvy will have the greatest success in carving a fulfilling adult lives for their children.

In the spirit of building “service capitol” for all parents of special needs children, my next posts will feature more of what I learned at this last transition session, and will include some links for information. As always, please help spread the word!