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.

An Appreciation of my Tokens

After almost two weeks of being cooped up in what I can still not decide is Winter Wonderland or Homebound Hell (I'm leaning towards the later), I have finally designed a sanity system. Using a token board dug up from Behavior Consultants Gone By, I have devised a simple, effective way for Sayer to "earn" his way onto the computer.

Here's how it works: Sayer loves to look at water slide, roller coaster and marble maze videos on YouTube, like this one. (That counts as developing keyboard skills, right? Maybe not.) So, we are leveraging YouTube privileges to motivate Sayer. Before doing YouTube, he has to earn five tokens by completing five tasks. He gets a token -Tiddley Winks with Velcro - on the board for each task he completes.

Yesterday I used a written list of tasks that he checked off, similar to the schedule he uses at school. These were:

1. Empty dishwasher
2. Read a chapter of book from school. His current book is about metamorphosis and Sayer has a point, Chrysalis DOES sound like Christmas!
3. Watch a new DVD from the Scholastic Video collection, a Hanukkah gift
4. Put clean clothes from laundry basket into drawers
5. Make bed

This positive reinforcement strategy works great, much better than the "three strikes you're out; no YouTube tomorrow!" threat. For one thing, we kept loosing track of the strikes, and for another, with tokens we make sure that Sayer does homework and chores regularly. It also reinforces behavior strategies used in his class room.

And most important of all, I really don't WANT to take away the YouTube privilege because snowy days (and, to be honest, many clear days) are long and when Sayer is on YouTube I can, well, do stuff. Like write this blog post on my lap downstairs, which I am doing right now.

On balance, it takes a bit of forethought to come up with the list of token chores, and I try not to do this BEFORE my first cup of coffee. And Sayer still needs some supervision for most tasks. But, the token system still pays back in dividends. Unless we have another power outage...

Cook from scratch? Scatch that -Just trying to cook!

Last Friday I went to a soup exchange and menu planning discussion. I felt like a TOTAL poser, especially since Dan made the pumpkin soup. I didn't have much to add to the discussion since our family's meal planning consists of a rotation of Trade Joe's frozen entrees, a stir fry, hamburgers with french fries and ....repeat.

I can't cook, let's just get that out of the way right now. Dan still recalls the one and only meal I cooked for him when we were dating. It was a soggy vegetarian lasagna from Mollie Kazan's Moosewood Cookbook. I managed to simultaneously over-cook and under-cook this dish.

Dan, on the other hand, used to be a cook at the housing cooperative he lived in while going to college in Berkeley (wow, could that sound more hippy-dippy?). Anyway, once I convinced Dan that it was just the two of us, not two dozen of us, we got into a groove where Dan did most, OK just about all, of the cooking. This has worked until it stopped working.

One of the most challenging aspects of getting older is realizing that the old systems and habits we have gotten used to are no longer working, and need to be changed. Dan now works one hour away a few days a week, and telecommutes the other days. On the days he drives to work it doesn't really make sense for him to rush home and cook a meal.

Nowadays, I can put together spaghetti and meat balls; by that I mean frozen Trader Joe's meat balls, canned sauce and spaghetti (we use whole wheat, do I get points for that?). I can also cut up a mean salad, but I'm not much use beyond that. I've always found it a challenge to go through the sequences of cooking; I can't even explain it, but having Sayer running around certainly doesn't make me more eager to try.

At our soup exchange discussion, the other women had some great ideas about using the Internet to find and keep track of recipes, organize meals, make shopping lists and so on. These ideas intrigue me - here I have been perceiving the computer as a tool to avoid meal planning not abet it! I'm ready to step up the meal planning and increase the variety of our dinner diet.

I want to use the inspiration from these other healthy, organized cooks to implement real and lasting change in our household. All too often, I get over eager and burn out. That's not just me, right? In my "must change everything right now" mode I would bring Dan four new, complex recipes to try all in one week. This would overload our kitchen, our taste buds and our patience and we would then revert to burgers and fries in frustration. Whew! I'm exhausted just thinking about it.

Instead, I am using this blog to hold me accountable to these two concrete and measurable goals (aha, my grant writer self comes out). I commit to:

1. Find one soup or stew recipe a week for Dan to make. Eating the yummy soups I brought home from the soup exchange reminded me how nice a homemade, hearty soup is. In summer, I will find one dinner salad recipe per week.

2.. Pick another NEW recipe for us to try at least twice a month. I will seek input from Jacob and Sayer, and remember that we have to at least double the recipe to adapt to teenage boy portions.

What I need from you, readers is to encourage me and hold me accountable. Our family will start this in December so please ask how we are doing. We won't give up our cornmeal frozen pizzas or salad in a bag, but we'll try to reduce their place in the rotation.

And if you want some great healthy eating tips, recipes and inspiration, go to Minda's Eat Well, Be Well web site. Minda is a Camas-based nutritional therapist who hosted the soup exchange I attended. Her site has a great resource list, and a link for you to sign up for her monthly newsletter.

I hope you all have a great Thanksgiving surrounded by family, friends and fresh food. Oh, and maybe some organic chocolate turkeys.

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.

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!!

Dealing with Difficult Behaviors - Yours, Mine and Ours

One of the things I dread, no I mean enjoy, most about blogging are the seemingly endless opportunities to learn new technologies and ways of thinking. At the same time I can use the writing and research skills I am more confident about. There is comfort in the feeling of competence, but the line between competence and complacency can be fuzzy. Blogging keeps me on my toes.

Parenting through mid life can also bolster feelings of competence, but there’s danger in thinking you have little left to learn. Although I try to attend training sessions and workshops focused on the nuts and bolts of systems and programs , until last night it had been quite a while since I went to a talk that was more touchy-feely than fact-filled.

I heard Dr. David Pitonyak speak to the Special Education Parent, Student, Teachers Association about Dealing with Difficult Behaviors. Dr. Pitonyak regularly visits Clark County to provide training and consulting to families and organizations regarding disability support issues.

I found Dr. Pitonyak's perspective refreshing, and his words are helping me to view Sayer’s “challenging behaviors” in a new light. I’m not going to rehash his whole lecture but I do want to share two “take aways” [do I like this term or despise it? I’m still not sure!]:

Dr. Pitonyak's main point is that difficult behaviors result from unmet needs. First, when trying to understand and respond to a child’s behavior, think about this three legged-stool of issues:

REST

STRESS

SELF-CONFIDENCE

Dr. Pitonyak's belief is that most challenging behaviors result from a dysregulation of one of more of these stool legs. Often problems in one area feed off of or cause problems in another area. If you are tired, your self-confidence is weakened; if you are stressed out, you don’t sleep as well, and so on.

This idea has reassured me that Dan and I are going some things right, although there is room for improvement. I have been making an extra effort to boost Sayer’s self-confidence; i.e. “You did a great job at the library.” I’m also thinking about the link between the lack of rest and his anxiety (maybe he’s still getting used to daylight savings time ). We adults also have to contend with the three-legged stool. When I am tired from Sayer getting up early due to anxiety, I have less energy to boost his self-confidence, which would lessen his anxiety.

Dr. Pitonyak also emphasizes that persons with disabilities need to feel useful and included. Being of service,not just being the one served, is essential for self-confidence. Dan grasped that instinctively last week when he let Sayer choose a bag of ravioli at the grocery store, even though we already have three bags of the same item in the freezer. And we are on the right track since Sayer loves to help with laundry – although he can be overzealous and would wash his clothes daily if he could. We’re still working on the concept that dirty clothes must accumulate!

The second point to share is that we as parents need to appreciate the value of joy in our child’s lives. Too often, we view every event as a “’teaching moment” but don’t make enough of an effort to have fun with our children. Dr. Pitonyak's belief is that persons with disabilities are too often isolated and miss having friends. Our family is fortunate because Sayer does have some friends and maybe just as important, he perceives that he has friends.

However, Sayer is unable to pick up the phone or arrange a play date on the school bus, so it is up to Dan and me to make social moments happen. Too often, making social plans shifts to the bottom of the pile. Hearing David speak has recharged my commitment to broadening Sayer’s fun profile. Luckily, we can tap into organized social activities organized by parents, such as Friends on the Spectrum outings.

Dr. Pitonyak's web site has great information and resources; I encourage you to explore. His “7 Questions to guide the development of a support plan” link offers a good summary of his talk last night. And don’t forget to make room for some fun this week.

Caregivers: Got to get them into our lives

Caregivers. When our children are younger or first diagnosed with a disability that term may not resonate. But as our children get “asked to leave” child care centers or family child care homes, or we find that we can not leave them with the teenage gal down the street while we go to the dentist, then we take another look at the term. Eventually, we realize that finding people to take care of our children when we are not there can be a Herculean challenge.

For my mom friends and I, identifying, arranging and managing caregivers is a part-time job in itself. Although we may be able to use group child care options, more often than not our children need one-on-one care providers. Mothers who work need care, clearly, for when they are at work. But mothers who work from the home also need respite – to renew themselves, go to medical appointments, carve important “couple time” or spend time with their other children.

But, of course, we need more than warm bodies. We need to find persons who can not only keep our children safe but also, hopefully, engage them, encourage playful interaction and foster independent living skills. I have heard stories of mothers training caregivers for a few months, only for the care giver to move out of the country. I also know moms whose children have had the same caregiver for years, and wouldn't miss that caregiver's wedding for anything.

As our children get older, we see that we may need caregivers for a good while, perhaps into and through our child’s adulthood. Our children can not be left alone at a certain age, like “typical” children. This fact may be hard to swallow when our children are young and we are living day-to-day. However, it is important to realize that caregivers enrich all our lives. They can be an important part of your child’s Person-Centered-Planning team, or bring an important perspective to IEP meetings.

Our Caregiver Story

For our family, we have two steady caregivers for Sayer (three if you count our on-site fall back, brother Jacob) and each bring different gifts to our lives. We found both “B” and “M” through word of mouth recommendations from other families. “B” has worked with us for over two years. She is always up for taking Sayer on outings such as to the movies, the mall, miniature golf, or her friend's farm. Her whole family has embraced Sayer and he plays with her nephews, attends family birthday partie, and goes to “B”'s parent’s house on occasion for dinner. Since we have no extended family nearby, we really value these kinds of interactions. “B” also stays at our house for the week-end a few times a year, so Dan and I can get away. As the Master Card ad goes, “Cost of a week-end alone at the beach: Priceless.”

My friend “L” introduced us to “M” over a year ago. For the past year, “M” has met Sayer’s bus on Tuesdays and Thursdays and been his companion for two hours in the afternoon. Sayer and “M” go on scooter rides or walks,unless there is a torrential downpour or snow - and sometimes even then! “M” also helps Sayer do homework and straighten up his room. He is a true buddy for Sayer, and he understands how to manage Sayer’s behavior, since he works during the day at school with another child on the spectrum. He can draw a visual schedule on the fly – a very useful skill!

Sayer is always counting the days until “M” or “B” come – we hear “Two more nights and ‘M’comes” or “Five more nights and play golf with ‘B’ a lot. How lucky we are to have them both!

How do we find these important folks?

Often, we look to those who already interact with our children or others, such as special education instructional assistants or recreation aides/mentors. Or, we scour Craigslist for ads posted by caregivers; word on the street is that results are mixed with this tact.

A strategic, well-organized way to go about adding caregivers to your family’s life is to read A “Stranger Among Us: Hiring In-home Support for a Child with Autism Spectrum Disorders or Other Neurological Differences. In this book, author Lisa Ackerson Lieberman, a counselor and mother of a child on the autism spectrum, discusses in detail how to identify your family’s caregiving needs, recruit, evaluate and hire candidates, and effectively manage them once they are hired.

I highly recommend this book, although to confess, I have not used many of Lisa’s strategies to find a broader base of caregivers than those few we have. I know we could use more options; sometimes I have to miss meetings or other events if my three “go to"people are not available. But, to be honest, I’ve had a hard time mustering up the energy to do find potential care givers, explain Sayer’s idiosyncrasies and strategies to manage his behavior, and invite additional people to witness the goings on in our homes. I know it is a chicken or the egg issue. If we had more caregivers I’d be less prone to burn out. But I’m too burnt out to find other caregivers. Is this just me?

Share your caregiver stories

Let's share our caregiver success or horror stories, along with tips and suggestions for using caregivers through our children’s life span. If you send them to me in the comment section below, I will compile them and add to the blog – we can create our own caregiving support network.

Of Stepford Wives, spring break, and blogrolls

The Stepford Wives movie, the 1975 version, is a camp classic. I was 15 when it first came out, and it left quite the impression. Although I am having a harder and harder time remembering names (the whole midlife brain in flux issue), I can vividly recall one malfunctioning wife uttering over and over “I’ll just die if I don’t get that recipe.” I can still see her arms robotically flailing about.

I feel like Stepford Mom on this, our spring break with an arm break. I find myself uttering the same thing over and over again; my brain is on the repeat cycle. Each night near bed time, Sayer says, oh say, five or ten times: “Go to bed when it is dark, not cloudy?” and without thinking I say in an increasingly robotic tone “Yes, bed time is at 8:00 o’clock; it will be dark then.” Again. And again. And again.

Spring break, winter break, summer – those times when our child’s sharply scheduled life becomes undone. Luckily, Sayer got a new totally waterproof cast today, so he can go swimming. And we are counting the days until school starts again.

Until then, this blog thing has been a personal godsend. I am now making connections and getting some synergy going. More and more folks I don’t even know in “real time” are looking at my blog – hurrah! I have discovered that other bloggers are putting me on their Blogrolls, which are lists of blogs they recommend to their own readers.

I am so grateful to these bloggers and am starting a Blogroll of my own. My blogroll list blogs of midlife women; some of these women have children with disabilities, some don’t. And they have their own viewpoints and opinions, which I may or may not share (I’ll never tell!).

I invite you to check out the blogs of women like Jane Gassner, whose ByJane blog offers great information and insight for all women in midlife. She is working to create an online Midlife Bloggers network. I am also on the blogroll of the Awalkabout’s weblog, written by a family attorney who is the mother of three special needs children. Her blogroll includes a number of blogs written by parents of children with autism. I also invite you to check out Rhea’s The Boomer Chronicles blog– in which “a 40-something boomer examines midlife crisis, ennui in America, and other compelling ideas.” I will be adding other blogs from time to time.

And if you still need a lift, rent The Stepford Wives. Nothing against Nicole Kidman, but see the original. It’s a hoot

We are the Accidental Experts

I did not embark on parenthood with the idea of amassing considerable knowledge about creating picture schedules, identifying sensory triggers to prevent melt downs, writing social skills IEP goals, or ways to encourage language. But now I know all these things plus much more. Fifteen years ago I wasn’t sure what occupational therapy was (something to help stroke victims?) yet today I am an accidental expert.

Recently, I spent a few minutes with the two-year grand son of a friend, and his mother. Both mom and grandma were baffled by his behaviors, but I could tell right away that he has sensory dysfunction issues and is trying gallantly to get the input he needs. When did I learn that a toddler who insists on dipping his fingers into goopy lotions needs that input; needs to finger paint with shaving cream or pudding? Years of reading books, observing Sayer’s sensory therapy, and being around other children with disabilities has given me expertise I hardly realized I have.

I have also become an expert on accessing systems. I have ideas on how to ask for more interventions than those initially offered to this boy. I can suggest that more than one adult attend each evaluation and therapy session to help absorb all the information. I know where the best school based early-intervention programs are, and are not. I am full of advice!!

My friend “P” recently encountered a mother of a child with autism who was having a tantrum in front of a grocery store. Although she didn’t know them, without hesitation she stopped and helped both the mom and child work through the melt down. “P” was able, on the fly, to aide this family by applying what she has learned about “difficult moments” with her own son. “P” felt good about being able to provide information and comfort; she, too, is an accidental expert.

When we moms were "newbies" to the world of special needs, it was our turn to be perplexed by our child’s behavior, stressed by all we needed to do to manage our child's disability or health challenges, and overloaded by information - both that we sought and that was thrown our way. I know that our family is forever grateful for early hand holding of Sayer’s therapists, teachers and other parents; hopefully your family has a similar gratitude list.

Now, as we have absorbed some hard-earned wisdom, we should all acknowledge our own expertise. And perhaps it is our turn to “pay it forward” and help other parents. Have you found yourself helping other parents or wondering if you should? Is our accidental expertise a blessing? A burden? Both? I’d love to know what others think.

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!

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.

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!

"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.

Person-Centered-Planning Resources

The Family Panel on Transition panel last Tuesday night featured a family who went through a Person-Centered-Planning process for (and with) their daughter. It also included this student's transition teacher. The person-centered-planning process featured the student and her family, the student's teacher and also persons involved in various aspects of the student's life, such as her church and swim team. One thing that really struck me about this process was that the person-centered plan became the backbone of the student's IEP. The teacher noted that rather than spending two hours at her computer writing an IEP, she joined family and community members in brainstorming a transition plan together.

Because the planning process was led by an outside facilitator (another special education staff member), the teacher was able to take off her "instructor" hat and join the others in thinking both in and outside the box. The teacher noted that while the Person-Centered-Planning process took some time, the plan that was developed ended up "driving" the student's IEP, which took relatively little time to develop.

A great web site to learn about family-centered-planning is the Person Centered Planning Education Site sponsored by the Cornell University Employment and Disability Institute. The site features free online courses on the person-centered planning process, along with readings, links and downloadable resources.

In the "good timing department,the Multnomah Parent Action Committee, a member organization of the Family Action Coalition Team (FACT), is sponsoring "Creating a Plan for Your Child: A Person Centered Planning Workshop" in Gresham on March 8th. The Events link of FACT's web site lists details for the workshop. Please note that the workshop is free but registration is required and space is limited. The Multnomah Parent Action Committee is also sponsoring the same workshop in Portland later this month, but that event is already full. If you'd like to go to the one in Gresham you may want to register sooner rather than later.

Parks & Recreation Inclusion: Isolation Buster

Parks and Recreation inclusion programs are vital survival tools for persons with disabilities and their families. They provide opportunities for fun and a sense of belonging. The Vancouver Clark Parks & Recreation inclusion program provides inclusion mentors (aides) and other accommodations that enable all children and adults to participate in their activities.

Sayer has gone to a Parks and Rec summer day camp for the past two summers, and has also gone to their winter break camps. In these camps, Sayer has gone on tons of field trips in the community, and is treasured by the camp counselors. It's wonderful to see the counselors eyes light up as give him a grand welcome each morning, rather than a look that says “uh,oh, will he cause trouble?” He has also taken gymnastics classes and rock climbing classes – these classes give our Saturdays some much needed structure.

Unlike schools, Parks and Recreation programs serve our children throughout the life span. Teens, adults and seniors with disabilities are all welcome, and such programs provide important respite for parents of older children who need a break but want their children to do something more rewarding than stay home with a caregiver.

But enough words, for a real look at the inclusion program watch this brief inclusion video of the Parks and Recreation web site (look for the "View the Inclusion Video" link). I am a member of the Access to Recreation Steering Committee that guides this program, so feel free to contact me with any questions.

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.

Zen and the art of chore chart maintenance

I've heard that the age of eight is a mini "tween"year, when kids are between being little ones and big ones. Sayer is becoming more and more of a "big kid" before our eyes, but our home's "infrastructure" hasn't kept up. Our main new year's resolution involving Sayer is that we usher in his transition from "little boy" to "big kid."

Step One: Say farewell (no more saying "bye-bye," that's little boy talk) to Sayer's train table, wooden train tracks, ineffective toy storage unit and adorable, painted -in-Mexico dragon toddler table and matching chairs. Off they go to the local YWCA, to make room in Sayer's room for a desk, effective storage units from IKEA, and most anticipated by Sayer, our all-in-one foose ball, pool ball ,air hockey table.

Step Two: Increase chores and responsibilities. Since our long-term goal is for Sayer to live independently, we believe that he should learn to be a contributing member of our household. But that isn't as simple as putting up a list of chores and expecting Sayer to do them. We need a "tool" to help. Unfortunately, for parents of kids with disabilities, the tag line for our tools is "Operator needed - requires parental time and brain cells to set up, implement and evaluate."

However, I recently bought I Did My Chores, a tracking chart and system that requires planning and thought to set up initially, but after that it's easy to set up each day. There are downloads on the web site that allow you to customize the chores to your child. It's helpful for all of us for see what Sayer needs to and should be doing. Sayer is able to get the reward thing, although more for smaller items than a big reward down the road. The challenging part for me (or as Sayer would say, "that's a tricky one' ) is that if he doesn't do a chore I can't nag, I just have to let it go. No chore, not token, just breathe.

Happy New Year - here's to growing up!

"Stimming" vs. Sanity

Parenting children with disabilities is a lot of work [as Homer would day, d’oh!]. When Sayer was younger, I always felt a bit “robbed” of down time. Neurotypically developing kids ( aka regular ‘ole kids) were usually granted down time to watch television, play video games or whatever, but because Sayer has autism, Dan and I were cautioned against letting Sayer be in his own world> We were advised by educators and therapist not to let Sayer engage in behaviors that are repetitive but soothing - meaning to “just stim.” So instead, we we vigilant and made sure he was nearly always “engaged.” Talk about searching for balance – I would have just settled for time to read one section of the paper with a cup of coffee.

As Sayer got older, we found that the week-end mornings were the toughest part of the week – Sayer was so well-scheduled at school he couldn't’just eat breakfast and hang. He did better when he had a visual schedule laid out for him in the morning that outlined his activities for the day. One more job for Mom. I know I’m not the only “autism mom” that wishes their kid would watch an hour or two of Saturday morning cartoons.

Today, wiser woman that I am, I realize that we can’t be super parents who are “on” all the time. When "regular ole' kids" play Wii for hours on end, ins't that a type of stimming? It is repetitive and pleasurable, but is that so bad? Nowadays, we try to strike a balance between letting Sayer indulge his favorite activities even when they are a tad “stimmy” versus pushing him to try new activities.

For example, Sayer LOVES Wallace and Gromit, particularly the movie “Curse of the Were-Rabbit” [ 85-minutes plus previews, yeah!]. We let him watch it about every other day, sometimes with one of us in the room and sometimes on his own. So far, he hasn't shown any ill effects, except that he likes to repeat one – and only one - phrase from the movie. Unfortunately, that phrase is “shoot the dog.” We are working on getting Sayer to day “Cheese, Gromit, Cheese” or “I do like a bit of Gorgonzola” instead.