IEPs According to Dr. Seuss (author unknown)

Dan was sent this poem via Washington Dads, a support group for dads raising children with special needs. It seems appropriate with IEP season upon us.

IEPs According to Dr. Seuss (author unknown)

I do not like these IEPs

I do not like them, Jeeze Louise

We test, we check

We plan, we meet

But nothing ever seems complete.

Would you, could you

Like the form?

I do not like the form I see

Not page 1, not 2, not 3

Another change

A brand new box

I think we all

Have lost our rocks.

Could you all meet here or there?

We could not all meet here or there.

We cannot all fit anywhere.

Not in a room

Not in the hall

There seems to be no space at all.

Would you, could you meet again?

I cannot meet again next week

No lunch no prep

Please hear me speak.

No, not at dusk. No, not at dawn

At 4 pm I should be gone.

Could you hear while all speak out?

Would you write the words they spout?

I could not hear, I would not write

This does not need to be a fight.

Sign here, date there,

Mark this, check that

Beware the student's ad-vo-cat(e).

You do not like them

So you say

Try again! Try again!

And you may.

If you will let me be,

I will try again

You will see.

Say!

I almost like these IEPs

I think I'll write 6,003.

And I will practice day and night

Until they say

"You got it right!"

The Perils of City Driving: Have the streets shrunk or has my van grown?

Wow - where did last week go? My Different Nest has been a Neglected Nest of late, but here is a story about driving in "the City" that I posted recently in the 50-something Moms Blog:

City Driving: Not so fun anymore

Today I drove into downtown Portland (OR) from Camas, WA, the "suburban utopia" I call home for a mid-day appointment. I often go visit the Portland neighborhoods but it has been a while since I've been to downtown, let alone driven in on a week-day.

Either my mini-van has gotten bigger or the streets have gotten narrower, but this trip was a bit harrowing. The simple, and embarrassing, truth is that I'm not used to sharing the road with so many pedestrians and cars. The streets in the suburbs are so, well, wide. The stop lights are fewer, and further in between. And the rush hour traffic home. Oy, I could never deal with it every day.

While I was driving downtown, destination: Smart Park garage, Goal: Don't hit any one, I remembered how I used to drive over to to the East Village from Long Island in my parent's car. At night. At age 17. And it didn't faze me.

As I was driving home, I recalled how I learned to drive on the Long Island Expressway. Yes, our high school driving instructor used tough love to teach us how to merge. In retrospect,he deserved a medal for bravery. But, this afternoon there I was on the freeway, shoulders scrunched up to my ears and hands rigidly set at 10:00 and 2:00 o'clock battling "traffic" that DC Beltway drivers wouldn't bat an eye at.

Now I'm home safe and sound, wondering if it's middle age, suburbia, driving a Dodge Caravan instead of a Dodge Dart - or a combination of all of the above. All I know is that when I retire I want to live IN a city, so I can walk or ride on over to the Early Bird Special.

This is an original 50 Something Moms post. When Carol is not driving her minivan with the largish carbon foot print she writes in her blog A Different Nest.

Hey - It's Just Like Youtube!

Sayer, my nine-year old guy with autism, discovered Youtube during a seemingly endless stretch of snow days last December. He is particularly fond of videos of people going down water slides and videos of marble runs and mazes. He loves watching the marbles go down complicated structures.

Sayer also is fascinated by videos of people enjoying McDonald's play structures. Apparently, McD playlands are not just for kids. More adults than you would think find value in crawling through brightly colored plastic tubes and posting videos of it to share with the world.

As happy I am to see Sayer make connections and use his words, I have been embarrassed a few times when he has exclaimed "It's just like Youtube!" He did this when we went to McDonald's recently, and a few weeks ago when we went to the wonderful North Clackamas Aquatic Park and eyed the water slides. Aren't kids supposed to watch videos and movies and think,"That's just like my life, my school, my family"? Well, maybe life does imitate art more than we think.

The upside is that Youtube is actually expanding Sayer's creative play. He saw a video of a marble run constructed on a staircase, and we subsequently made a few of these together. I know, that sounds self-serving as I write it, but we moms of kids with autism take our survival tools where we find them.

And our family is planning to take Sayer to the humongous Great Wolf Lodge water park for his birthday in May. While we won't tell him until shortly before we take off (an hour if I had my way, he has such anticipatory anxiety), I KNOW he will be extra excited because he has seen Great Wolf videos on Youtube. I just hope he doesn't expect me to shoot down those slides, like those perky Youtube moms. Life doesn't imitate art that much.

Tips for a Freewheelin' Time without the offspring

It is day two of our child-free stay-catation, while Sayer is at camp and Jacob is visiting relatives. Here are some tips for your stay-cation, should you be so lucky to have one.

1.Take a break from logistics and planning. Until you stop it's hard to realize how much we moms are constantly planning, arranging, organizing, anticipating. I am training my mind to think "I won't make that phone call until Thursday" and "I'll think about setting thus-and-such up later." I'm getting the hang of it and will probably master this feat just when I need to restart the logistics-wagon.

2. Take a break from laundry; don't think "This is a perfect time to do a bunch of loads." Just wear what is clean.

3. If you have a husband/partner do things at a "grown-up" time. Our kids seem to self-destruct if they don't have dinner by 6:00 p.m. so what a treat it was to go work out at 5:00 and -gasp - eat dinner at 8:30. This is also a good time for lamb chops and shrimp.

4. Read a book that has nothing to do with self-help, your professional life, or saving the world. Right now I am reading "A Freewheelin' TimeA Memoir of Greenwich Village in the Sixties," a fascinating memoir by Suze Rotolo, who was Bob Dylan's girl friend in the early sixties. It really capture an era and a sense of place. Oh, but that Bob - such a genius but such a player. Between this book and the Joan Baez song "Diamonds and Rust" you get a pretty good picture.

5. Think about how this would be a perfect time to clean the fridge, clean out drawers and get on top of weeding the yard and so on. Don't do it (see # 2). Instead, take a nap or pop in a DVD.

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!

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.

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.....

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!

"Fakin' it", special needs style

Ah, Valentine’s Day time again. Only this year, we had two days notice to write 22 valentines - not a bit deal for "regular 'ole" kids maybe, but for kids with disabilities that make writing difficult, it can be a BIG deal. In years past, Sayer would dread this task and he would wear out after four or five cards at a time. We needed A LOT of advance time.

This year, Sayer was able to write the names of all his class mates and his own name in short order (with the help of a promise to Burgerville). Luckily, I found Valentine cards that had ample space to write both the name of the sender and the receiver. In past years, the spaces were so small writing was next to impossible (one year I simply typed and pasted all the class mate names).

But full disclosure – Valentine card writing was a major "hand-over-hand" activity. I held the pen with Sayer - well, I did the bulk of writing to tell the truth. However, I did make sure that it had that "Sayer" look - deliberately a bit sloppy, like designer jeans with ripped knees. And Sayer did help with spelling.

I spoke with another mom, who wishes to remain anonymous, who confessed that due to time constraints she wrote her child's Valentines, and was also careful to make sure they looked like her child had done it. This reminds me of the beginning of the book I Don't Know How She Does It: The Life of Kate Reddy, Working Mother. This novel is about an executive woman in England who is trying valiantly to balance a demanding job with being a mother. In the opening scene, she “roughed up” and smeared the frosting on a store bought cake for a school function. She was determined that her cake would have the "I baked this at home myself" look, and if that required baked goods trickery, so be it.

Similarly, I think that we mothers of children with special needs sometimes have to do our own fakery just to get by. At times, the expectations of what we can accomplish are too high, given the extra vigilance required to guide our children through activities others take for granted.
If anyone had any "fakin' it" secrets to share, I'd love to hear them. They may not be as bizarre or cynical as the confessions on dailyconfessions.com (l love the one about the "vegetarian" who eats burgers") but we can try!

Why can't I be Miss Mary Sunshine?

It’s the end of a long and busy week, made longer by long mornings with Sayer. I am not a night owl by nature, but I do prefer to wake up via a curve of consciousness that gradually moves from semi-comatose to ready for action. In contrast, Sayer seems to have two switches, ON and OFF, and after (gratefully) a full night’s sleep he is ON in spades. As a result, even though I am usually in bed by 10:00 pm or so, I struggle each school morning to keep up with his temperament.

Sayer’s cue to get dressed each morning is when Jacob leaves for his high school bus at 6:55 [Yes, we DO feel his pain, poor guy!!]. Then Sayer is raring to go downstairs, have his bagel with cream cheese and then---well, pretty much to keep vigil on the street lights that surround our house. I get a play-by-play of which ones are off, which ones are still on. At the same time, I boil water for our French press coffee maker and anticipate the moment when the coffee – nectar of the gods – will reach my bloodstream. And don’t cross my path if we have run out of ½ and ½!!

In the bad timing department, Sayer is very difficult to engage in the morning, before school, while I am full of morning-foggies and lack the ability to channel him into much focused activity. This is exacerbated by the fact that we won’t let him play Wii bowling before school; we’re not keen on video games before school. Once my coffee kicks in, we sometimes do some jumping and singing on the mini-trampoline; a good sensory input activity.

Today I googled “How to become a morning person” but skipped any links that mentioned cutting back on caffeine (there were quite a few of those, unfortunately). I did find this article from the Seattle Times, How to rise and shine when you’re nocturnal by nature useful, but I was disappointed to read this cold truth about Dr. Michael Smolensky, co-author of The Body Clock Guide to Better Health: “While he says he can reset you body’s clock so you’ll get enough sleep and reliably wake up on time, he can’t turn you into Mary Sunshine.” If he can’t turn me into Mary Sunshine I may be doomed!

Here is a blog entry is written by a mom in Canada who writes a blog called The Balancing Act. She writes about being surrounded by morning children (and grown ups). She has to get up at 5:30, which makes 6:55 seem downright luxurious.

Ah, youth,or I digress

I'd like to continue my discussion about brain growth in midlife women and adolescents, but my own brain is a tad fried from participating in the Clark County Student Environmental Leadership Forum today. This was a great environmental education event for teen,s and educators, organized by various organizations including Clark County Solid Waste and NW Service Academy. I went as a parent volunteer with Jacob's high school.

It was interesting to hear the information in these sessions through the ears of teens - a guy who didn't know that mercury is in tuna fish ("wow, they should take that out"), a girl who asks why the harmful chemicals in American shampoo and lotion aren't just banned like they are in other countries. These adolescents don't carry all the assumptions many of us "grown ups" have about society, such as systemic inequality or the perils of unchecked profit. I find it refreshing to watch students start to connect dots. And very cool to be able to help them create action plans to help make the planet a better place.

What I learned today:

- Doing something completely unrelated to being a  mother of a child with special needs can be a breath of fresh air

- A double Americano after lunch is essential when you are sitting in on back-to-back workshop sessions

Resources for the Different Nester

One goal for this blog is to create a blogroll of relevant blogs that I think Different Nesters would enjoy. I'm quite overwhelmed by the number of blogs just within the special needs parenting realm. To tell the truth, I'm getting a blogosphere headache! So if my blog roll is a product, the process is exploring blogs and ferreting out a few at a time to feature as I go along. Here are a few special needs parenting resources:

"When a Child Outgrows the Safety Net" by Lisa Romeo is a great article about the feelings a mom has as her special needs child enters adolescence. The article is adopted from an essay Lisa Romeo wrote that opens up a recently published anthology, Special Gifts: Women Writers on the Heartache, Happiness and Hope of Raising a Special Needs Child. I haven't read the book yet, but will soon and report back. It has gotten some positive reviews on Amazon. Lisa also has a blog about her experiences writing, working and mothering.

Mothers with Attitude is a web site written and edited by Terri Mauro, who has two adopted special-needs kids from Russia who are now teenagers. Terri is theParenting Special Needs guide for About.com, and the author of The Everything Parent’s Guide to Sensory Integration Disorder. This web site is is affirmative of our strengths and skills and even features - gasp - humor. Terri also has a blog, Parenting isn't pretty----but it sure is good for a laugh that details her experience raising her teens.

Miriam Mason is one of my autism mom group buddies who writes articles for Associated Content. Her article "Intuition versus pediatrician: trusting yourself" is an excellent article to share with parents whose guts tell them their child is developing differently, but are urged by experts not to worry. I for one have been there; when Sayer was not standing on his own at a year we were urged by our pediatrician to "wait and see" but by 14 months we insisted on physical therapy and by 18 months he was walking. PT was our "gateway therapy" as it turned out, and we're glad we didn't wait and see any longer.

I hope these links lead to inspiration. Next up, some links related to our lives as women in midlife.