Autism's False Prophets: A look at the role of bad science and good intentions

Autism's False Prophets: Bad science, risky medicine, and the search for a cure, explores the role of social forces in shaping what we perceive as "science" and "truth." Through great research, author Paul A. Offit debunks the idea that vaccines or mercury cause autism, or that biomedical "alternative" treatments will cure it. He aims to give voice to parents who do NOT buy into this idea, and resent the diversion of research and resources spent to prove or disprove causation and miracle cures rather than interventions and family support.

That would be me. Hear Offit's own words here.

Offit's book features a few parents who have publicized their beliefs, at times at the peril of their own family's safety from zealots. Camille Clark, the woman behind the Autism Diva blog, has been harassed by phone and e-mail; it looks like the blog is no longer active but the archives are fascinating.

Kathleen Seidel is an activist who started neurodiversity.com. She has had her share of vocal detractors as well, many other parents of children with autism. Her web site/blog has a great Health Fraud section.  Kathleen and I are on the "wrong"side when it comes to conspiracy theories about "Big Pharma" (the pharmacy industry) being in cahoots with the government to cover-up harm done by vaccines. We're not buying it.

Neither are we buying the promise of alternative "cures." Says Kathleen, in the book, "When I read about a doctor who suggests to a parent that they take out a second mortgage on their house so they can buy a home Hyperbaric Oxygen Therapy Chamber, I want to cry." (230).

I encourage readers to check out these web sites, and read Autism's False Prophets. Have you tried a non-traditional treatment for your child with special needs? What was your experience like? I shared a bit about our family's experience in my post Race for a cure or journey towards acceptance? Please share yours.

Today is graduation day for high school seniors 'round these parts. But for teens or young adults with special needs, it may just be another day, if they are not "walking" with their "typically developing" peers.

How nice, then, to read about a graduation ceremony recently in Oregon for graduates of the Salem-Keizer School District's Community Transition Program. This article describes the impact that graduates have had have on the instructional assistants, bus drivers and specialists who have worked along side of them for so many years. Many of these attend the ceremony as "crucial partners in special education."

Thanks for Mackenzie Ryan for writing this article, for the Statesman Journal for publishing it, and to reader "K" for bringing it to my attention via Facebook.

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.

On explaining autism to a "neurotypical" 1st grader

A few days ago, our 1st grade neighbor boy, "B", went with Sayer and I on a walk around the neighborhood. Rather, I walked, Sayer rode his scooter and "B" was on his bike but mostly walked along side me, chatting. As we cruised by the elementary school one block from our house, that "B" attends, and he asked me, as he has in the past, why Sayer does not go to his school - aka our "home school."

I explained that Sayer has autism and that he is in a special program at another elementary school (which, mind you, is a only a mile or so away). I asked him if he knew what autism was, and he said he had heard of it.

I gave him the Readers Digest version, saying Sayer learns differently and has some problems talking, and with being a good friend, and can get overwhelmed when a lot is going on. Also, sometimes it makes his behavior not so great. And "B" replied, "Oh, yeah, like when Sayer doesn't always answer me when I ask him questions." Yes, like that, I said.

By then, we were back at our house, and "B" seemed satisfied with my explanation. Sayer, naturally, ran right into the house without saying good-bye to "B", giving me another example to describe to him how kids with autism have limited social skills. With that, "B" was on his way, quite nonchalant.

Has anyone had a similar experience? It's hard to know what is too little and what is too much information to share. Sort of like the birds and the bees.....

Pondering the Neurodiversity Movement

"I am not a puzzle, I am a person" is a salon article by Elizabeth Svoboda with this preface: People with autism don't need to be "cured," argues the burgeoning "autism culture" movement. Not all parents or medical experts agree.

This fascinating article was forwarded to me by my friend and personal autism-issue clipping service (Thanks, Mr. D!). It's about the "neurodiversity" movement - and I'm not sure what my opinion is on the idea that society needs to learn to adapt to people on the autism spectrum, not the other way around.

I am quite concerned about the "ABA-bashing" aspect of this movement. Individual ABA therapy, a type of behavior therapy commonly used for people with autism, jump started Sayer's ability to talk, and instilled in him vital self-sufficiency skills. Both his language and self-help abilities are essential to who he is today - although he STILL would have you believe he needs help putting on his socks. And I think that the "aversive" techniques originally used in this therapy, decades ago, are rare today.

On the other hand, any movement that disparages Jenny McCarthy has some merit, in my book. From the article:

Jenny McCarthy can go jump off a cliff. While the Hollywood comedian's claims that childhood shots cause autism may be well-intentioned, Ne'eman says, her message has a pernicious and probably untrue implication: If we stopped giving kids "toxic" vaccines, autism wouldn't exist. Not only does this message distract from pragmatic efforts to get autistic kids the social support they need, it implies that autistic children are inherently less valuable than their normal counterparts. "The cure paradigm sends a message that there is somehow a normal person under the autistic person, and that's a significant denial of who we are.

But yet - people like Sayer do need to fit into the world as it is and not endanger themselves or others. And to disparage therapies is like throwing the baby out with the bathwater. Please share your views on the idea of neurodiversity, and this article.

Social Security PASS Program: A pathway to self-employment

How 1 Autistic Young Man Runs a Business is a great article sent to me by reader "K." It describes how Joe Steffy, a young man with autism and Down's syndrome operates his own Kettle Corn business, Poppin' Joes Kettle Corn. This guy is from Kansas and is also nonverbal.

Joe developed his business with the help of his parents, a consultant, and a program that's news to me - the Social Security Administration's Plan to Achieve Self-Support program (PASS). He now has five part-time employees and unmeasurable self-esteem and sense of worth that comes with running your own company.

The PASS program offers resources to enable people with disabilities in the Social Security system to begin work or return to work. A key support in the program is the ability of persons who receive Social Security benefits to set aside money and/or things they own to pay for items or services needed to achieve their specific work goal.

Joe was required to develop a business plan to participate in the PASS program. The webcast on his web site, "Developing a Business Plan for Self Employment" may be useful for families exploring this employment option. The PASS program has other requirements, all outlined in this link.

More information about the program, and other success stories, can be found in this video from the University of Florida Institute for Child Health Policy.

What I don't know is how this program is fairing in light of budget cuts and the economy. It would be a shame to curtail the program, especially since participants who succeed save the government money. For example, Joe no longer receives Social Security disability payments AND he pays state and federal taxes.

If any readers have experience with this program, or know about it's future fate - please share.

Discover MidLife Bloggers

When I first started this blog, I connected with other midlife bloggers via BlogHer, a women's blog site. Several of us responded to the post query "Where are all the midlife bloggers?" submitted by Jane of the By Jane blog.

Soon, and with much work, Jane created MidLife Bloggers: Making the most of midlife together.

MidLife Bloggers is a wonders site that features various contributors, on these topics:

Our Bodies: What We See In The Mirror and How We Feel About It

Our Careers : The work that we do and that we wish we did

Our Minds: Our emotional, spiritual, and intellectual selves

Our Relationships: Mates, children, parents, siblings, friends.

A group of us women bloggers contribute to the blog (included your truly). I encourage you to visit the site. Here is a sample of recent posts:

by Lilly of Lillyslife

The Beginning of the End: When a Parent Starts to Fade by Tori of Babybloomr

Social Networking, Twitter, and our brave new world, by Darryle Pollack, who also blogs at I Never Signed Up For This

I Have Nothing to Wear: Pants Department, or How about that elastic waist? by By Laura G. of Rebellious Thoughts of a Woman

From Lounging to Laundromats: Re-entry is no day on the beach

Dan and I have been back from Kauai for two days and the karma gods have decided that we had too much fun and it's pay back time. So, instead of snorkeling or sipping Mai Tais we are figuring out the logistics of getting laundry done before our TWO MONTH OLD washing machine is repaired next week. It broke down on vacation load #2, the day after we got home.

It seems the folks at Home Depot don't really care that we can't wait five days to wash our sand-encrusted duds. Who knew?

On the plus side, doing laundry requires fewer brain cells than some of the other tasks on my to-do list. I seem to have left many of my brain cells on the shore line of the Na Pali coast. I can go to the laundromat and listen to my "Hawaii Five-O" Ipod playlist and try to go back to my "happy place."

Also on the plus side - the kids are well and we came home to a clean house, fresh linens and dinner already prepared. Thank you again, Cousin Paula - no price tag can be put on that!!!

Green Flip Flops: Obscure St. Paddy's Day rite or???

Or, I'm off to Kauai for a week with my husband while his wonderful Cousin Paula watches the kids.

For more details see my post here: "Kauai with Kids: Just give me umbrella drinks, a chaise lounge and a good book"


Aloha 'til next time.

Skyward Family Access: Is Big Brother watching?

Our school district uses Skyward Family and Student Access, a student information software program that tracks grades, attendance, assignments, schedules and, if so desired, purchases from the school Food Service. Teachers record information, and students and registered family members can log on any time.

Leaving aside the food services issue ("What did you have for lunch? A sub sandwich and a salad. Busted, you had fries and a ring-ding"), there are clearly plusses to this system. Parents can monitor homework and grades before there is a serious problem, a lifesaver especially for students with ADHD.

But, it's that little feature called Login History that puts me on edge. Jacob is a high school sophomore, and I learned through chatting with one of his teachers that some parents check their kid's grades several times a day, to monitor their GPA. To me, that's over the top. But it's what I heard next that made my blood go cold: "And then we have the parents who say they check their kids progress on Skyward Family Access twice a week, but when we look at their Login History we can tell that they have only checked three times all year."

Wow, I thought, when I realized this. I better put "check Jacob's grades" on my regular to do list. I don't want to seem like an uninvolved parent. But, it's not so simple as a quick log in and log out. Login History records not only when a person logged in, but also their IP Address and Information Viewed. So, if a parent logs in and just checked Food Service to see what their kid ate for lunch but did not view their grades, that is duly noted.

Despite discovering that my Skyward activity can be analyzed, my commitment to frequent and thorough logins has not stuck. This is mainly because Jacob keeps me up to date with little prompting. He regularly checks his grades; in fact it borders on obsession, stats nut that he is. I do check now and then to see what he is up to, but I haven't joined the Grade Police. Besides, the district still (for now?) mails out progress reports.

Thanks to Skyward, parents can truly monitor their children's education; students can forget trying to intercept progress reports in the mail. So much for white-out and the time honored trick of transforming a "D" to a "B". And yet....the sociologist in me is uneasy. For one thing, parents who are not computer-savvy, lack access to the Internet, and/or have limited English are at a disadvantage. I'm guessing that it some of these parents who need feedback the most.

Also, these educational data systems are part of a larger data capturing revolution that gives me pause. I am currently reading a fascinating book, The Numberati by Stephen Baker. Baker explores how all of our on-line actions are monitored, aggregated and analyzed by the likes of marketers, employers, political operatives, and the health insurance industry.

Through metrics and statistical modeling, institutions can gather and analyze every stroke we take on our computer, as well as some of our off-line behavior. If marketers can predict our purchases based on our Netflix queue, what can school districts - and potentially colleges, universities or the ROTC - find out about our students through our activities on programs such as Skyward Access?

And all this quantification, of course, does not take into account soft intangibles, nuances, the human element. Do I not check Skyward very often because I am indifferent or because I have good communication with my son and his teachers? As for Dad Y down the block who checks daily - how can numbers say if he does so because he wants his daughter to get into Stanford or because she spends her waking hours locked in her room and won't tell her folks about her school life?

In the end, I think we should be grateful for computer-based tools that provide information to abet our parenting. But at the same time, we should be cautious and maybe nervous. Am I being paranoid? What do you think?

Reaching Out: Resources for Parents and Siblings of Children with Disabilities

This week I got a call asking if I had some local resources for a family with a sixth-grader who has Aspergers. His parents and siblings are having some challenges dealing with him. Here are both local and more universal resources. Please add your own; it’s far from complete.

SIBLING ISSUES

The Sibling Support Project is a "national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns." Their web site has lots of resources, including books and a description of the Sibshops, which are workshops specifically for brothers and sisters of people with special needs.Their list of books and movies related to this issue is comprehensive; the two books that I bought for Jacob when he was younger were:

View from Our Shoes: Growing Up With a Brother or Sister with Special Needs, which has essays written by siblings themselves, and

And Don't Bring Jeremy, a novel that I really recommend, especially for kids into sports. I think I liked it more than Jacob!

Locally, the Arc of Clark County Parent-to-Parent Support program has sponsored Sibshops in the past but I'm not certain they still do. This program's web site has a calendar of workshops, trainings and support groups.

SOCIAL PROGRAMS FOR CHILDREN/TEENS AND YOUNG ADULTS WITH ASPERGER SYNDROME

Some communities have monthly Austism Aspergers Game Clubs, where people on the autism spectrum and their families gather for games, snacks and fun in a supportive, non-judgemental setting. These clubs are a great place to tap into information and resources from other parents. In Vancouver, there is a Game Club on the 4th Friday of each month from 6:30-8:30 the Beautiful Savior Lutheran Church, and also a North Clark County Game Club. For contact information, check out the calendar of the Parent-to-Parent web site.

Social skills groups are groups designed for children, often on the autism spectrum, to practice social skills with other children with similar communication and behavior challenges. I don't feel comfortable listing any providers of these (well, unless they want to send me an Amazon gift card KIDDING!!!) but search around on the internet and if you are really stuck, contact me privately. A good way to find out about such groups is at autism support groups or game clubs.

PARENT/FAMILY SUPPORT GROUPS

Support groups are not for everyone, but they are a life saver for some. There are those for grand parents, parents of newly diagnosed children, moms nights out,and so on. There are several listed in the Arc of Clark County's Parent to Parent calendar.There are also support groups for fathers. One is Washington State Dads, whose mission is "to support male caregivers of children mental health, behavior, or emotional concerns in Washington state."

RECREATION

Sports and recreation programs can provide an energy outlet for kids, a chance for them to socialize, and a bit of respite for mom and dad (including time to spend with other siblings!!) The Clark-Vancouver Parks and Recreation department has a wonderful program for persons with disabilities, including both staffing and accommodations for inclusion and programs specifically designed for people with special needs.

Many parks departments have similar programs, usually larger ones. If your local town has limited service for people with disabilities, see about the next larger community. For example, residents of Clark County who do not live in Vancouver but live in other towns such as Washougal or Ridgefield are eligible for Clark-Vancouver recreation programs. The department's Programs for People with Disabilities page has all the information you would need (plus a great video!).

There are also programs specifically for people with disabilities, such as Challenger Division of Little League baseball and TOPSoccer, a program of US Youth Soccer. Honestly, we have had limited success with these so far but are trying Challenger again next week. Hopefully, Sayer will be more interested in hitting the ball with his bat than banging on light posts and annoying his fellow players. If nothing else, he's crazy about "Coach Dave."

Wow, I think I'll stop there! In a previous post, We are the Accidental Experts, I wrote about how parents of children with disabilities become experts in the world of special needs, by osmosis and experience. I still remember the help and support I got when Sayer was first diagnosed and do believe that what goes around comes around, so I hope this finds its way to the people who need it most.

Rx Autism and Lessons Learned: And how this relates to a Small Faces song

"I wish that I knew what I know now
When I was younger
I wish that I knew what I know now
When I was stronger."

Ooh La La by the Small Faces


This week, my friend's grand son received a formal, medical diagnosis of autism. This news brought a flood of memories of me as a confused, terrified and angry mother of another three-year old boy with autism.

What can I say? How can I help? One way is to send an e-mail with some suggestions of school services to push for, and contact information for local support groups and resources. Done, and done easily. More hard is to try to share with this boy's family the real lessons I have learned in the past seven years. But here are a few things I know now that I wish I knew then:

EARLY INTERVENTION IS KEY BUT NOT THE ONLY THING: Focus on early intervention but don't freak about about it and buy into the idea that there is a finite "window" for effective intervention. Yes, the earlier the better but our kids' brains and nervous systems keep going and growing. They don't stagnate at, say, age five. That said, if you have the resources, pour them into one-on-one therapy NOW.

FOCUS YOUR RESOURCES AND ENERGY CAREFULLY: Understand and accept that there are not enough resources - time, money, family support - to pursue every intervention and approach. If you are a millionaire or living at the poverty line, this still applies. Given limited energy resources, focus on therapies, interventions, strategies that:

- Have research and medical data to back up claims of effectiveness
- Have been around for a little while and have proven effectiveness,
- Are doable without driving you, your child and those around you totally crazy
- DO NO HARM to your child's physical health

Here are more suggestions gleamed from my years in the autism trenches:

DO do your best to tap any and all early intervention programs in your school district and local service agencies. DO ABA, floor time or other one-on-one therapy if you can afford it but not if it causes bankruptcy or divorce. Yes, I've heard stories about this happening. Apply for government support and services - this in some ways is the "easy" stuff.

DO spend energy and effort figuring out communication systems, schedule tools and other ways for your child and you to communicate. Make communication, behavior management and education interventions a top priority and......

DON'T listen to every parent who tells you that a Gluten Free/Casein Free diet "rescued" their kid from autism. Raising a kid with autism is hard enough without trying to restrict your family to an expensive, difficult diet. We tried, and it was a fruitless nightmare. I am clearly biased on this one, but I encourage you to view these type of claims with healthy skepticism.

DON'T Chelate your child's blood - this has little proven effectiveness and CAN do harm (children have died. If you don't know what chelation therapy means, all the better.)

DO, then, read up and understand that autism treatment can be a racket that can cost families financial resources, energy, and hope. Recognize that parent stories and testimonials are not the same as scientific evidence. Check out the web site of the Association for Science in Autism Treatment before getting caught up in "biomedical" or "alternative" interventions.

DON'T spend too much time worrying about and thinking about what "caused" your child's autism. We all think, wonder and theorize about this at first but after a while obsessing about it is counter-productive. It is what it is. And genetics plays a pretty important role, it really does.

People who claim that a certain "thing" caused YOUR child's autism - like vaccines, heavy metals, antibiotics, or something that mom "did" while pregnant are usually the same people pushing unproven medical "treatments." These people don't buy into the genetics thing. I think they are wrong. And who needs more guilt??

DO understand that you are going through a type of grief that, like all grief, will not be resolved overnight. But also understand that if you can't get beyond, or put aside, the "Why" and "Why me/my child?," you can't best move on to what you CAN do and what resources you CAN tap into.

DON'T forget to take care of your self and don't get stuck on the "All Autism All the Time" channel. Yes, it's good to read up on autism, but it's also good to read a People magazine and see a chick flick.

DO pace yourself; you and your family are in it for the long haul so if you get to a place where things are going somewhat smoothly, go with it. Don't create your own problems!

DON'T get caught up with other parents who think that "the school district is evil." Sometimes, parents transfer their anger, fear and frustration about their child's diagnosis onto their teachers and therapists. Been there, done that. Really, for the most part, they are doing their best with limited resources and I've found I get further being cooperative than being a bitch. And trust me. I've been both.

DO bring snacks to IEP meetings, and gifts for teachers and teachers assistants, even if it's just cookies or hot cocoa mix (see the DON'T above).

These are probably all the "do's" and "don'ts" you can absorb right now - but just one more. Look to the moms and dads who are further down the autism road than you are. Try to meet kids with autism who are older than your child, but realize there is such a broad range of functioning.

Always remember that your child and your family with grow, learn and find joy.

Family burdens: In our own words

Thanks to the readers who commented on the financial and family burdens they face while raising their children with special needs. In your own words, here are some of the visible and invisible costs we bear along with the rewards of raising our children:
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"With our Aspie in particular, we never know which day the school will call to tell us he's just done something inappropriate or violent. We also have three days a week with therapists coming into the home. So my husband and I both have chosen to work part time, where, in a family of our size, we fall just inside the SSI radar with two diagnosed children. (If we only had one we wouldn't qualify.) This way, we have a chance of being much more available to deal with issues and time tables.

But because of our two we are also not 'soccer parents,' and won't be. We can't commit to giving our non-autistic son what many of his peers have--baseball, basketball, other team sports with practices and places to be and practices to meet. I think that's a cost that's hard to quantify."

******

" As I was working this morning,I wondered if society as a whole understands the impact of autism on their financial burden (it was the economist in me this morning...ie. if 85% of our marriages end in divorces, then that means that a large amount of our families are on welfare and thus needing public assistance, WIC, etc...) So therefore, the pennies that society pays for services is really 'chump' change in compared to everything else. "

*******
" For us, having a young adult with a developmental disability means more: more laundry (he often wets the bed and is messy), more hot water (a hot bath is a favorite calming activity), more gas (a ride in the van is a favorite outing), and more child care for longer; barring a miracle, our son will never be able to be left without an adult caregiver. A huge extra expense too is dental care. Our son needs general anesthesia even to fill a cavity. Ugggh. Notice that I listed no special equipment or therapy in my list; just survival takes extra money."

*******
"Another expense for families is the severe lack of care options for our loved ones, especially after age 12. Many, many parents (usually the mom) want to work, are able to work, but cannot find reliable care.....at any cost.....for their child with a disability so they end up at home. I worked full time when our children were small and I have terrible memories of days gone bad when sitters would not show, etc. etc. In this area, care often runs 9 to 15 dollars an hour, again, when you can find it, so in many cases when the parent does find work, the net earnings are minuscule.

Or, worse for children, many special ed parents take jobs in schools such as staff assistant because the hours are the same [as student school hours]. These parents end up being truly burned out as work and home life start to look the same."

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Once again, my appreciation for these comments. They add a personal touch to the findings of a recent study, which I summarized in my post Financial Burdens of Raising Children with Disabilities: Policy Wonk Edition.

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.

Financial Burdens of Raising Children with Disabilities: Policy Wonk Edition

Last week, I reported on an important study about the financial hardships experienced by families raising children with special needs. This post focuses on policy implications of the study.

The first section is a rerun of my previous post, and the policy implication section below is new. Thanks for all the great comments on your experiences with the financial burdens of raising your children. Your input and opinions will be featured in Part III of this "series" - so keep them coming.

"Material Hardship in U.S. Families Raising Children with Disabilities" is a study recently published in the journal Exceptional Children and written by Susan L. Parish and a few of her colleagues at the University of North Carolina -Chapel Hill School of Social Work. These researchers analyzed data from a 2002 national survey, using specific economic hardship measures to compare families with and without children with disabilities. The full study can be found via a link on Dr. Parish's web site here A summary of the research can also be found at the UNC School of Social Work Fall 2008 Contact magazine article link here. Below is the "Cliff Notes" version.

The study compared families below and above the federal poverty line (a controversial concept itself outside the parameters of this post), on these specific measures: Stability of telephone services, medical hardships, food hardships and housing hardships. The study verified what we likely already know: families at or near the poverty line who are raising disabled children face severe hardships in all these areas.

However, the research also showed that "a substantial proportion of middle-class families raising children with disabilities experienced material hardship." (p.88). The researchers were surprised to find that many higher income families are also struggling. Such families, due to their income levels, are ineligible for assistance and support available for lower income families. Yet, they still incur extra expenses that do not burden other families with "typical" kids.

I think we know what some of these costs are - therapies ,therapies, therapies, durable equipment, special medicine, educational tools, adapting homes for special needs, medical costs. And there are also lost wages of parents who need to care for children, higher costs of recreational opportunities and child care, and more.

What does this mean? It means that many middle-class families raising children with disabilities are running out of food at the end of the month, have to choose between therapeutic interventions and paying their phone bill, must move frequently because of financial problems [and our kids need stability - ouch!], and forgo preventative health care because they can't afford it. What is so frightening is that this study was conducted BEFORE the current economic downturn.

POLICY IMPLICATIONS

What can our government and our society, here in the U.S., do to ease the financial burden on families who are raising children with disabilities? Are new policies needed to protect middle-class families from poverty resulting from overbearing costs of raising children with disabilities? If so, which ones?

Dr. Parrish and her research team believe that policy-makers need to rethink the current eligibility standards for federal programs that intend to help families of children with special needs. They write:

The widespread hardship and deprivation experienced by children with disabilities and their families should be addressed by a thoughtful and comprehensive public-policy response. Although more research is necessary to fully understand what would most help these families, researchers think that the present study results suggest that it would be useful and effective to increase the Supplemental Security Income (SSI) payment level; increase the parental income limit below which children with disabilities qualify for SSI; increase the asset limit for Medicaid and SSI, so that families could save money that might buffer hardship without losing their child’s SSI and Medicaid; provide families in need with free or low-cost cell phones, to assist them in managing and meeting their children’s needs; and expand housing subsidies specifically for children with disabilities and their families. (Exceptional Children Vol 75, No.,p 89)

In addition to the recommendations outlined above, the researchers recommend that policy makers expand the food stamp income eligibility criteria for families raising children with disabilities. They also suggest that policymakers expand the eligibility criteria for the earned income tax credit for working families, so that more working families of children with special needs can take advantage of this anti-poverty program.

Readers: Do you agree or disagree with these policy recommendations? Are there others policy approaches or recommendations that you think have been overlooked? Please share.

Not so pretty: New National Study on Financial Burden of Raising Children with Disabilities

What impact does having a special needs child have on a family's financial well-being? This is a frequently debated question with limited data to lead the way. However, a recent national study of the financial burdens on families raising disabled children sheds some important, and sobering, light on the subject.

"Material Hardship in U.S. Families Raising Children with Disabilities" is a study recently published in the journal Exceptional Children and written by Susan L. Parish and a few of her colleagues at the University of North Carolina -Chapel Hill School of Social Work. These researchers analyzed data from a 2002 national survey, using specific economic hardship measures to compare families with and without children with disabilities. The full study can be found via a link on Dr. Parish's web site here A summary of the research can also be found at the UNC School of Social Work Fall 2008 Contact magazine article link here. Below is the "Cliff Notes" version.

The study compared families below and above the federal poverty line (a controversial concept itself outside the parameters of this post), on these specific measures: Stability of telephone services, medical hardships, food hardships and housing hardships. The study verified what we likely already know: families at or near the poverty line who are raising disabled children face severe hardships in all these areas.

However, the research also showed that "a substantial proportion of middle-class families raising children with disabilities experienced material hardship." (p.88). The researchers were surprised to find that many higher income families are also struggling. Such families, due to their income levels, are ineligible for assistance and support available for lower income families. Yet, they still incur extra expenses that do not burden other families with "typical" kids.

I think we know what some of these costs are - therapies ,therapies, therapies, durable equipment, special medicine, educational tools, adapting homes for special needs, medical costs. And there are also lost wages of parents who need to care for children, higher costs of recreational opportunities and child care, and more.

What does this mean? It means that many middle-class families raising children with disabilities are running out of food at the end of the month, have to choose between therapeutic interventions and paying their phone bill, must move frequently because of financial problems [and our kids need stability - ouch!], and forgo preventative health care because they can't afford it. What is so frightening is that this study was conducted BEFORE the current economic downturn.

POLICY IMPLICATIONS

What are the policy implications? Instead of reporting what the researchers suggest I'm asking you readers to recommend what can and should be done. My next post will discuss the journal article's policy recommendations but I'm curious about your take. Also, please share how having a child with a disability impacts your families financial well-being. I also know I left out some of the extra costs we families incur.

Help - I'm imprisoned by my Gmail

It's finally happened; the only way I can write a blog post today is to NOT open my Gmail account. Clearly I am not following the advice of Julie Morgenstern in her book Never Check E-Mail in the Morning. Morgenstern writes "E-mail is not evil. It is just a little dangerous." Mmmn...debatable?

Alas, I've become one of those persons who has too many e-mails to keep track of, on too many topics. I pride myself on having lots of "conversation folders" for different issues but they seem to have mutated in recent months. On some days I'm even what Morgerstern calls a "Power e-mailer" - someone who receives more than fifty e-mails a day and sends out a minimum of twenty. Who-hoo - too bad this doesn't come with a power salary.

As I sit here in the library writing this I am realizing how rarely I have been reading books lately, compared to other times in my life. And I'm spending more time on the computer than ever before. As Police Chief Marge Gunderson said in the great Coen brothers' movie Fargo, I think they may be, you know, connected.

No, I'm not going to write about strategies for managing your e-mail and not letting it take over your life. Efficiency strategies are like diet tips. You know you need to eat more vegetables and less Doritos. Doing so is another story.

So instead, I'll share my resolution for the new year: Less screen time, more book time. Wish me luck. Maybe there's a novel about a group of Facebook friends who meet nefarious ends after they ignore a certain person's friend request.....

Watching the Inauguration in the OTHER Washington

The Hilton hotel in Vancouver, WA was thousands of miles away from the Washington Mall but it felt almost like "being there" to me. Dan and I watched the inauguration with friends at the bar of the hotel, in front of a flat screen TV more frequently used to show Blazer games.

Over breakfast and coffee, we watched Obama take the oath, heard Aretha sing, listened to Elizabeth Alexander's poem and stood like the millions there as we sang the national anthem along with the U.S. Navy Band Sea Chanters.

Tears flowed from us all, I think, along with huge cheers and loud clapping at key moments. Wow. I just kept saying wow. That first time I heard Obama introduced as "the 44th president of the United States" - I don't think I'll ever forget that proud, ecstatic feeling.

And, back at home, just when I thought my tears were dry, I came upon this story about Kakamega, the very town Dan and I lived in during our Peace Corps experience 20 years ago. Yvonne Chaka Chaka, a South African singer who was popular in Kenya "back in our day" gave a free concert in Kakamega to celebrate "Obama Day" and promote a much-needed anti-malaria campaign. Wow, again. Talk about the circle of life.

For more photos for the Daily Nation, Kenya's newspaper, see this story: "Kenya awaits Obama's inauguration"

Fight or Fight? or "Oh, no, it's family day at the museum"

Sunday afternoon at the science museum. It seemed like the best laid plan. My friend "T" and her son "J" would meet up with Sayer and I and cross the river over to OMSI, the great science museum in Portland. Our family has been an OMSI member for years, and on our last trip as a foursome, "T" joined as well.

So, membership cards in wallet, we set off. Our first sign that something was different was the traffic guard pointing us to the overflow parking lot for the overflow parking lot. Mmmn? Was it a new exhibit? Our question was soon answered by the "Family Day" banner.

Family Day is the first Sunday of the month, we found out, with deeply reduced admission fees. Let me say right off that I think family days are very important and a great way to reach out to people who may not otherwise be able to enjoy a cultural attraction. That said, as a mothers of a child on the autism spectrum, my heart beat quickened and my hands started to sweat. Crowds, noise and autism - a precarious combination.

The museum was packed. The kids actually handled it fairly well, but I was on high-level alert the entire visit to make sure Sayer could cope with the excess stimulation. His attention span was even briefer than usual, and he and I made the circuit of his favorite spots pretty quickly. Not quite like going to the Met by myself and gazing for minutes at a Monet.

Since we were all members with unlimited admission, we didn't feel bad that we didn't stay as long as we usually do, or get to see a show at the planetarium (they were sold out). Luckily, we were able to lure the boys out with the promise of a trip to Ben & Jerry's for ice cream. Good thing - I needed some Cherry Garcia to recuperate. My own tolerance for noise and crowds is decreasing as I get older.

When Sayer and I got home, I finally relaxed, well, OK, fell into a deep nap. "T" and I both agree to avoid OMSI visits the first Sunday of the month in the future. Sometimes the greater good and instinct for individual survival collide!

A List of 100 Things: Which ones have you done? Which do you most want to do in 2009

As this new year starts, I wonder how many new and exciting experiences will come my way in 2009. Given that the first day of the year featured a trip to McDonald's indoor playground and a work out at the gym, the thought crossed my mind: Is that all there is?

Luckily, I remembered seeing this list of 100 Things in China's Brilliant Spectrum Child blog. The idea is to mark those things that you have done. For bloggers, it's a way for readers to learn a bit more about you; and for everyone it's well---fun. Below, I have marked those that I have done in blue, and I welcome you to try. Just copy into Word and reformat to black, and then mark those things that you have done.

I have…
1. Started my own blog
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than I can afford to charity
7. Been to Disneyland/world
8. Climbed a mountain
9. Held a praying mantis
10. Sung a solo
11. Bungee jumped
12. Visited Paris
13. Watched lightning at sea
14. Taught myself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty (and me a native New Yorker)
18. Grown my own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitchhiked
23. Taken a sick day when you’re not ill (ah, the things you do when you are 22 and the New York City party scene beckons)
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping
27. Skied a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of my ancestors
5. Seen an Amish community
36. Taught myself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke (Guitar Hero counts!)
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had my portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie (documentary)
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Got flowers for no reason
64. Donated blood, platelets or plasma
65. Gone sky diving
66. Visited a Nazi concentration camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had my picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury
91. Met someone famous (maybe....he said he was Charlie Daniels but I'll never be 100% sure)
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Owned a cell phone
99. Been stung by a bee
100Ridden an elephant

This exercise reassured me that I have got quite a few experiences under my belt, and it also got me to think about what I'd like to try to do in 2009. So, I picked a few things I'd like to add to my list of things in 2010:

The one thing I'd most like to do in 2009 but likely won’t, although you never know:

Visit the birthplace of my ancestors

Three things I’d like to do before 2010 that are more doable:

Join a book club

Get flowers for no reason

Play in the mud

What items top your "want to do" list for 2009? I'm curious to know!