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.