Autism Speaks . . . but does it speak for me?

Autism has been in the news a lot lately. Some of it’s good and some of it’s bad. Sometimes I studiously avoid news about autism because it forces me to think about things and face some realities that maybe I’d rather not deal with right now. And celebrating my 39th birthday today, I like to think I’m at a point in my life that I can figure a lot of things out without someone else telling me how I should feel or think about issues of the day, especially when those issues relate to family, kids and autism.

As much as we families may try, our lives will inevitably revolve around the child or children with special needs. Not intentionally and often despite our best efforts. But it is a reality. We limit our exposure to the “real world” and now that we’ve determined the schools here would be a big step backwards, we’re lucky if we get out once or twice a week, to the public library or a local restaurant. Even these limited excursions are stressful, difficult. The tension is palpable in both myself and my oldest son who does not have autism. The other night, we went out to eat for my birthday. Our booth was diagonal from a group of women who were having a wedding shower (one wore the little bride headband thingy). We always have Robert, my son who is most impacted by his autism, sit inside the booth, lest he decide to bolt from the table and investigate any visible phones (his current obsession) or try to grab something off a waiter’s tray. Now none of this would probably happen. But previous experience makes you cautious. Really, really cautious. So we do little simple things like have Robert sit on the inside of the booth. Well, we spotted a baby carrier directly behind Robert. Apparently, one of the ladies at the shower brought her newborn and placed the carrier in a chair at the table. We all looked at it knowingly and even considered having Rob move to the other side. Because he is intrigued by babies. Especially when they cry. And if they’re not crying? He might poke ‘em. Not to be mean. Just to hear the sound of their cry. Now when we lived in Vancouver, he participated in a program with his class called ‘Roots of Empathy’ – an excellent program that brings newborn babies (with their moms) into elementary classrooms. The parent talks about the baby and its growth. The kids can ask questions and the teacher takes photos of the baby’s development over subsequent monthly visits. Usually, the baby is walking and sitting up by the end of the year and the class has (hopefully) learned about caring for a baby and the baby’s needs. Robert participated fully with his classmates and he didn’t poke the baby once. In fact, I have a photo of him holding the baby and smiling (with help from the baby’s mom). But I was always a little worried and I know his aide was, too. I’ve seen him get that look in his eye. And I know it means trouble!

Having hopefully given you a glimpse of our typical thought process for something as simple as going to eat at a restaurant, I’m sure you can appreciate the hundreds of daily instances where these kind of thought processes are taking place. We bolt all the doors because there have been occasions when Robert has escaped to a neighbor’s house. This despite our best efforts at securing our premises, mind you. If you have children, and have ever “lost” them, even for a few minutes, at the mall for example, you know that the excruciating minutes before you “find” them are something you NEVER want to repeat. And I’m guessing many of your children, even young ones, could ask for help, articulate their name and your name. One of the first things we’ve taught Robert was his full name and birthdate, our full names and our address. Whether he can recall it in an emergency is still a question. This may sound crass, but don’t they have one of those implant chips for kids? If they can do it for dogs, why not kids? I’m being partially facetious but it is a real damn concern for parents of kids with autism because our kids are curious and a whole lot smarter than most people may think. If they see something and want to investigate it, they WILL find a way!

So the title of this post is about an organization called ‘Autism Speaks’. It was founded by former NBC executive Bob Wright and his wife, Suzanne in 2005 when their grandson was diagnosed with autism. I went through the story above to give voice to those families with autism who *know* the daily struggles we all face and to let those of you who don’t have children with autism know a little bit of what it’s like. I want to emphasize something at this point. I wouldn’t change my life. I wouldn’t change my boys. They are who they are, they bring me so much happiness and they are the best thing about me. But if being a parent is tough, being a parent of autism is nearly-but-not-quite-impossible. So back to Autism Speaks.

There have been a lot of organizations, particularly in the past 5 years or so, that raise money and awareness about autism. But I’ve been thinking lately. I appreciate what these organizations are trying to do, although I don’t always agree with their stances. But when an organization gets this big, I have to ask myself, what are they doing for the children, adults and their families who are living with autism every day? They are money-raising behemoths. Is that why I’m a little sad that the money doesn’t seem to make it to families that can’t afford therapy or can’t afford public school alternatives for their kids or are not able to school their kid(s) at home? This particular organization emphasizes science and research. They support a lot of scientific work that is good and necessary. But what good is it to this generation of people to find out the genes that may be implicated in the future? Before you call me selfish, consider: Autism Speaks and other organizations like them are raising money by promoting the struggles of families who are currently living with autism. They have produced some very touching (pretty realistic and incredibly sad) videos about people and families living with autism. They advocate attempts to “cure” autism. I know some adults with autism who insist they are the root of all evil but I’m not ready to go there yet. Here’s a snippet of a comment about Autism Speaks:

Autism Speaks is a hate group that would never give a single dime to help an autistic person – they want autistic people to cease to exist, and they’ve put out some pretty disgusting propaganda to push that goal. Sure, some of their money supports research into the causes of autism – but even that’s with the goal of “preventing” autistic people, never with helping an autistic person or a parent of an autistic child.

That’s pretty harsh. But I know a few adults with autism who feel the same way. They believe their autism is a part of them and the people they are. I love having this conversation with adults with autism. I tell them I hope my son will some day be able to articulate the way he feels about issues such as these to me. He can’t do it yet, but his language is growing in leaps and bounds and many people with autism acquire an enormous amount of new language as they get older. After all, it’s a developmental *delay*, not a developmental deficiency. When Autism Speaks first started, I sent them a note about autism advocacy. I worked for the same company as Bob Wright when my son was diagnosed with autism in 2001. And I fought the insurance company (as nauseatingly detailed in previous posts) for coverage for basic expenses. And the insurance company got away with it because the corporation was self-funding the insurance plan. So they didn’t have to follow state law to cover any of Robert’s therapeutic expenses. So I encouraged this organization to advocate for insurance coverage for autism. On their website, they applaud states for enacting (8 years later) laws to cover autism. But no one is addressing the loophole of self-funded mega-corporations. The state of Georgia had such a law on the books in 2001. The company for which I worked and Mr. Wright was a highly-paid executive, didn’t have to follow the state law.

Here’s my bottom line and it might not be popular. But organizations that raise money on the very real challenges experienced by families with autism need to start serving those communities they’re using to raise money. You want to give a million bucks to a scientist to perform genetic research that may or may not lead to another study that may or may not lead to a gene that may or may not be differentiated in the autistic brain? Fine. But how about throwing some of that money to authentic boots-on-the-ground projects? Like respite care for God’s sake? Like a decent fricking education for the people who are currently on the planet and living with autism? For educational programs that will train schools and teachers and peers to . . . wait for it . . . ACCEPT people with autism for what and who they are? For job programs that help adults with autism, even the most profoundly affected, participate in larger society? And for the many thousands who will graduate school and wonder what’s next? How about job creation for people with special needs? And quality, reliable coverage for speech therapy and occupational therapy? Sure, I’ll wear your rubber bracelet and put the ribbon magnet on my car. But what will YOU do?

Peace.

You say tomato, I say tomato. . .

This will be short and sweet. I pretty much detest the use of the word “retarded”. I imagine that those who use the word either a) don’t know anyone who has experienced the pain or stigma of mental illness/impairment or b) Just don’t care. I probably used the word when I was in grade school, but certainly not in the past 20 years or more.

A lot of kids with autism are mistaken for kids with “MR” (mental retardation or cognitive disabilities). Who are any of us to judge them or what their life must be like? I remember a kid named Jerry when I was in 4th grade and he was “mentally retarded.” I remember getting just as irritated with him as I did with my typical classmates. The positive side is that he was in our classroom – we had to learn to interact with him and respect him for what he was and he had to do the same. He was only with us for a year and I don’t know what happened to him after that. The negative side? This kind of inclusion simply doesn’t happen anymore. Not in the U.S. in any case.

A recent study states the rate of autism at 1 in less than 100 kids – and something like 1 in 58 for boys in the United States. Major organizations are conducting endless fundraising campaigns for genetic research into the “cause” or “causes” of autism. There are still many who believe autism can be cured.

When my son was diagnosed in 2001, we did everything we possibly could – financially, emotionally and physically. But he still has autism. Are we parents of children with autism to divide ourselves into categories depending upon how impacted our children are by their diagnoses? Are parents of children who are unable to speak supposed to go along with the agenda of parents whose children experience “social difficulties?” There is no doubt that all along this spectrum are children who don’t fit any of the molds that have been crafted for them by our society or our educational system.

What can we possibly do to “fix it” for our kids and for future generations?

I don’t know the answer. I don’t sleep at night. I wish I did.

Peace.

Healthcare Reform for Autism

Having not written in this space since April, I sat down at my keyboard today prepared to write about my doubts that meaningful healthcare reform legislation for people with autism could be passed in the current political climate. Indeed, judging from the media coverage, I was beginning to doubt any meaningful reform for healthcare could be passed at all. But apparently, I (along with the media covering these events) missed the very first question posed to President Obama in his Montana healthcare town-hall meeting. It was from the mother of an 11-year-old child with autism who worried that new legislation might impact his eligibility for Medicaid, and therefore, his access to quality medical care. President Obama told her:

If you currently qualify for Medicaid — your son currently qualifies for Medicaid, he would continue to qualify for Medicaid. So it would not have an impact on his benefit levels and his ability to get the care that he needs.

It was a relief for the mother and I’m sure for most families with autism, but it doesn’t begin to cover the complexities of medical care needed or the current gaps in coverage that exist. I’ve written before about my personal struggles, even with “excellent” health insurance, to properly fund my son’s interventions. I’ll briefly reiterate as I believe our experience is highly typical of most families with autism who have insurance but are denied coverage for basic therapies for a variety of reasons.

• September, 2001 – Robert is diagnosed with autism. Insurance will not cover developmental psychologist or developmental pediatrician (respective office visit costs are $220 and $495 out of pocket). Insurance covers the neurologist who, ironically, looks at my son for 5 minutes and repeats his name over and over to no response. Autism diagnosis is confirmed.

• September – November, 2001 – At the suggestion of a speech pathologist, we enroll Robert in speech-language therapy and occupational therapy 3x per week with the full expectation that our insurance will cover at least a portion of this expense. (Speech is $120/hour and OT is $120/hour = approximately $2880/month out of pocket.) We pay up-front as the need for early intervention is critical. Insurance denies our claims.

• I appeal repeatedly, over the phone and in writing, to the insurance company. At the time I was employed by one of the largest corporations in the world whose benefits were said to be “stellar”. Georgia is one of only 6 states at the time with laws regarding autism insurance coverage:

If a policy includes benefits for neurological disorders, it is prohibited from denying benefits for autism. Such benefits are subject to the same terms and conditions as those for neurological disorders (Ga. Code Ann. § 33-24-59. 10)

• The insurance company continues to deny coverage, citing a clause that speech-language therapy and OT are “educational in nature” and therefore not covered by the policy. When informed of the Georgia law, they continue to deny. I contact Georgia’s Insurance Commissioner.

• October, 2001 – During a joint speech-OT session, at age 4, Robert says his first sentence: “I want more round and round please.”

• November, 2001 – Having spent nearly $9,000 out of pocket in 3 months, we’ve exhausted our financial resources (we were lucky, but we were in our late 20s and hadn’t amassed a great amount of savings) and have to pull Robert from therapy. The insurance company will not reimburse any of the expenses.

• December, 2001 – The Insurance Commissioner informs me there is nothing their office can do because the large corporation I work for is self-insured and therefore is not required to follow state law regarding coverage for autism.

• January, 2002 – We learn of Georgia’s ‘Katie Beckett Deeming Waiver’ for children with autism. It allows children to receive Medicaid based on their diagnosis as opposed to their families’ income level. Robert qualifies and we get him back into speech and OT twice per week thanks to the waiver.

This is where I’d like to stop for a moment and refer back to the question placed to President Obama regarding Medicaid. For many families with autism it has been an absolute life-saver, including ours. My son might never have learned his current communicative abilities without it. We already know life will be challenging enough for him, but at least he will always be able to express his wants and needs in a way that others can understand. But here’s the problem with relying on Medicaid. Medicaid is both federally and state-funded. With the recent economic collapse, we’ve seen states slashing their budgets by as much as 30%, cutting teachers, firefighters, police and other essential services. When this happens, there just is not enough money for Medicaid to cover kids with autism. So they start raising the eligibility bar. Here in the state of Florida, if a child is able to use the toilet independently, he/she will not qualify for Medicaid. What this does, in effect, is take kids who may eventually be able to function independently (those who are less impacted by their autism) and remove them from beneficial therapeutic activities. It hurts kids who benefit the most from therapy. I’ve spoken to several friends in Georgia whose children no longer receive the deeming waiver due to the state’s budget crisis.

This brings me to a larger point, and it’s why I believe so heartily that our current healthcare system is broken. Why are insurance companies, who are paid premiums, allowed to shift the burden of coverage away from themselves and onto taxpayers? It’s bad enough we parents of autism have to fight battles in the schools or be perceived as wanting or getting “something for nothing”. But to expect states to cover these costs is unrealistic and unsustainable. Not only that, but it is incredibly short-sighted. How many autistic children will be institutionalized by the state as adults because they lack basic skills that they could have acquired given proper care and coverage? How many millions would it cost to care for an adult with autism? And is it the humane way we as a society treat the most vulnerable among us?

I recently had a political discussion with a friend who is a libertarian. He asked me, in all sincerity, if my son (and my family) wouldn’t be better off if the government simply “stayed out of it” and gave us the money we pay in taxes so that we could do what we wanted with it for our son. My reply to him was this – Autism is bigger than me and it is bigger than my family. We need a community. My son needs to be exposed to typical peers in order to learn language and appropriate behavior. I can’t provide that by myself. He needs an education (which I am currently providing) to help him learn to function productively and independently. Even on my best day I’m not as good as the aides, teachers and classmates who were all a part of his learning and development in public school in Vancouver, BC. He didn’t ask to be born with autism. His autism wasn’t the result of bad “life choices” or lazy parents or anything else. It happened. We are taking responsibility as much as we can. But we cannot do it alone.

This might not be so frustrating if I hadn’t seen it done well. Most who read this know we lived in Vancouver, BC for three years. Vancouver schools practice full inclusion, some better than others. Robert had a series of aides, one was a little difficult but two were outstanding. Every teacher he had took an interest in him and his development. The students in his class were kind and involved. They all benefitted along with Robert from inclusion. The BC government gave our family (as well as all families with autism who qualified) a budget of $7,000 per year (it is $20,000 per year for children under 6) to spend on necessary interventions and/or equipment. We rarely spent the full budget because Robert received excellent therapy in the public school. But we were able to use the funds for an excellent twice-weekly social/community skills program. He made such incredible progress. So much so that I will not enroll him in any Florida public or private school because it would be a giant leap backwards. He also saw a pediatric psychiatrist once per month with the visits fully covered by Canada’s universal health insurance.

People may wonder why we didn’t just stay in Canada. All our family is in the Southeast US and we missed them terribly. My husband got an excellent job with the same company here in Florida. We were able to buy our own home again. And we’re Americans, dammit. I hope that one day I will be able to speak longingly about the excellent healthcare and education my son received in Florida. But there’s a long way to go.

Peace.

What the Future Holds. . .

Albert Einstein once said, “I never worry about the future. It comes soon enough.” Some believe Einstein, with his quirky genius, was somewhere on the autism spectrum. It seems to have worked out okay for him. Many events have converged recently, making me think in a more serious and cautious way about our family’s future. I was brought up to live “one day at a time” and, being prone to anxiety, that’s what I’ve always tried to do. That doesn’t mean we don’t set goals or make financial preparations for the kids, but I’ve never obsessively planned much of anything.

One question that comes up a lot with my friends and family members concerns Robert’s future. The consensus in our family is that John and certainly Joe will likely (hopefully) be able to live happy, productive and independent lives. Whether that will happen for Robert is not so clear. I’ve always tended to believe he would rely on us, at least to some degree, for the rest of his life. And when the question is posed, “What about Robert?” I usually respond glibly, “I don’t know, but he can live with us (his Dad and I) forever if he wants to.” I don’t want to shortchange him and the progress he has made by saying there’s no hope he’ll live independently, nor do I want to live in denial that this may be a lifetime thing. That’s what I’ve always thought of as a “worst case scenario” and it didn’t sound so bad.

About a week ago, I got an email from the son of one of our very good ‘online’ friends. We’d never met Randy in person, but had spoken frequently and become close over the past six years. Randy passed away suddenly at the age of 57 in February, leaving behind two sons and a wife. Both sons are on the autism spectrum and Jonathan, age 25, is an incredibly talented bassist. He is speaking out more about autism and Asperger’s Syndrome and was recently featured in a documentary called “On the Spectrum,” which I have posted about previously. His father Randy and mother Lyn are also interviewed.

Randy was incredibly proud of his sons and was always so gracious and encouraging about our own situation. Jonathan told me his dad was proud of my blog and that I was writing about the issues that affect so many parents of kids with special needs. My heart is breaking for his family right now and all I can offer is to tell them what a wonderful person he was and how proud he was of all of them. My sincere hope is that Jonathan will continue his incredible music career and also that he will continue to speak out for people with autism and Asperger’s, lending his own unique and insightful perspective to the conversation. Another friend of Randy’s wrote a beautiful blog note about Randy here.

Having children will make most parents think about their own mortality. Here you have a human being (or beings!) entirely dependent on you for their every want and need. It is an awesome and terrifying experience. But at 38, obligatory life insurance policy aside, I haven’t seriously considered my own mortality and how it could affect my family. What would happen to my kids, especially Robert, if I wasn’t around? Or my husband? These issues are faced by thousands of families with special needs kids. And there are so many adults with special needs who have aging parents. These parents are trying desperately to arrange care in the event it is needed and relying on the good intentions and work ethic of near strangers to care for their loved ones. And while I believe in my heart that most people are good people doing the best they can, we’ve all heard the horrifying stories of abuse from those who aren’t. It would break my heart a hundred times over for someone to neglect, injure or hurt my sons. It’s happened before on a very mild scale and I quite nearly went ballistic, narrowly avoiding a lawsuit against the school and extracting myriad promises from the district where it happened.

I feel such a sense of urgency to bring autism awareness to people now. Not just for the pre-schoolers or the high-schoolers, but also for the adults who rely not just on their families but on society to protect them from harm. Every single person with autism has something to contribute and deserves safety, dignity and understanding. I’ve seen signs that people are learning and progressing – since our family has been in Florida, every person, without exception, has smiled kindly at my son (and me) during one of his “autistic moments” in public. I know it’s not like that everywhere and maybe we’ve just been lucky. But it’s definitely a start.

Love to the Chase Family and Peace.

Listen to Me!

Every public elementary, middle and high school in our area has the same message emblazoned on its outdoor billboard – “Education cuts never heal.”

It sounds catchy but it’s true. In a state where public education is already suffering, tax cuts and decreasing property values are forcing Florida to take even more money from its public educational system. Here’s an interesting look at how states in the US compare:

http://www.uschamber.com/icw/reportcard/default

There are several categories on the left and you can see a color-coded ranking by state by clicking on each category. I was surprised to see Florida is in the low-middle of the pack as opposed to the bottom, but the things they do well (good return on investment and data quality) don’t seem to translate into student achievement. Interestingly, the ‘return on investment’ calculation is controlled for poverty, percentage of students with special needs and cost of living. If there is such a report detailing the quality of education for children with special needs (as opposed to ‘neutralizing’ their effect on investment dollars), I’ve yet to find it.

And here is a sobering statement from the study’s ‘Major Findings’:

While a number of states are engaged in promising efforts to build more innovative and accountable K-12 systems, there would have been far more Cs, Ds, and Fs had we not graded on a curve.

What do the parents of kids with autism in places like Louisiana, New Mexico and DC do when public education is the only option for their kids? I can’t imagine these states are bastions of special needs innovation when they can’t manage to effectively educate typically-developing kids.

Having said this, as a mom, these problems are too systemic, too big, too scary and too unwieldy for me to take them on myself. Had our family not lived in a place and benefitted from an educational system of enormous quality (Vancouver, BC), I wouldn’t believe those ideas were even possible. And since my husband’s job is here in Florida (along with our family and our home), there are limited options (including our current choice to home-school).

I’ve said before I’m not a fan of charter schools. While they can be innovative and are not constrained by an enormous ’status-quo-craving’ bureaucracy, they are often used as substitutes for actually solving the tough issues in public schools. (The ultimate end-around if you will.) The good ones are full, the bad ones get away with lousy outcomes and the whole of them make the educational landscape extraordinarily confusing for parents looking for the best option. But I’m convinced the issues in public schools (more specifically, the lack of inclusion and innovation for special needs students, the lack of instructional personalization and the utter flogging of mind-numbing standardized test content to the exclusion of all else) will take years to solve. My kids can’t wait that long. They’re already more than halfway through.

So here’s my proposal for my inclusive Florida Charter School:

1. K-12 – Just because middle school sucks doesn’t mean you get to just take elementary or high-school kids. This is the most vulnerable time of life for many typically-developing kids and it can make or break the future prospects for a kid with autism.

2. Inclusion – Students with autism participate as fully as possible within the school community. The teaching of the Friend 2 Friend Society’s autism demystification and friendship programs would be the gospel and all kids would be taught how to accept differences and reach out to kids who may not be able to reach out to them.

3. The Theory of Multiple Intelligences rules the day! Here’s a basic Wiki description and an interesting article in ‘Education World’ magazine.

4. Teachers are supported, revered and rewarded. Theirs is the most important job of all. I used to volunteer in my kids’ schools in Georgia to run copies, assemble materials, and any other ‘grunt work’ the teachers would otherwise have to find the time to do. (That often comes after an exhausting day of dealing with kids, paperwork and meetings.) The teachers in my school would be supported by volunteers, paid adults with special needs, senior citizens who still want to participate in their community, and any other resource I could find. They would also be provided with behavioral and instructional support in the classroom.

5. Every classroom environment is stimulating and organized. No florescent lights (which can wreak havoc on sensitive sensory systems), lots of books, computers, and manipulatives for kids who learn best by doing (a modified Montessori model would be ideal).

6. Physical activity every day, healthy meals (oddly enough many companies now offer catered organic lunches for less than the preservative-laden crap currently passing for “lunch” in many schools) and rigorous health education.

7. Sensory spaces for any child needing to “get their engine running right” and specialized rooms for small-group or individualized instruction for those students (especially with autism) who need them. Even in the best schools, when my son Robert needed to work separately for one reason or another, there was no adequate space so he ended up in the hallway (full of distractions) or going for a walk outside instead of having a dedicated space when he needed it.

All this will cost money and if I want to win the lottery, I’ve got to start playing it.

Peace.

Struggling. . .

Although I’m learning a lot from teaching my kids at home, I continue to try and find suitable programs for them, whether as an educational supplement or for socializing with and meeting other kids. I keep thinking there is a little gem out there that I’ve yet to uncover where all the progressive parents of kids with autism send their kids to receive an enlightened and compassionate education. This whole process has brought up so many issues that I haven’t had to think about in years. I’m conflicted and frankly, depressed at the autism ‘landscape’ here in Florida and probably most of the country.

I’ve recently been in contact with a program my kids attended when they were first diagnosed in 2001 called Learning on the Log. I credit that program with helping to shape my views of my kids’ abilities and my own pragmatic approach which does not seek to “cure” autism but rather to help my boys be happy, productive, and capable of giving and receiving friendship and love. I found a fantastic partner in Vancouver with Friend 2 Friend Social Learning Society, which is dedicated to helping children on the autism spectrum learn to play and make friends. I know this won’t be popular with most parents of children with autism that I know, but I think we sometimes do more harm than good when we put all our effort into trying to make our children “normal”.

When my son Robert was first diagnosed in 2001, all my research led to a book by Catherine Maurice called “Let Me Hear Your Voice”. Maurice, a PhD, describes the intensive behavioral intervention that brought about her children’s “recovery” from autism. Here, a quote from the review at Amazon.com:

A vivid and uplifting story of how a family pulled not one but two children out of the torments of autism–and into a normal life.

Maurice preaches the gospel of ABA (Applied Behavior Analysis) as espoused by Dr. Ivar Lovaas. ABA is pretty much the only game in town here in Florida, and in much of the US. Parents have sued school districts and insurance companies to secure funding for the significant costs of therapy. For a nuts-and-bolts description of ABA, you can see this Wiki entry. And if you’d like to see what Maurice thinks of interventions other than ABA, you can see her letter posted here in response to a Time Magazine article about ‘Floortime’, a therapeutic intervention espoused by Dr. Stanley Greenspan.

Our family chose the ‘DIR/Floortime’ route. Floortime doesn’t have it’s own Wiki entry but you can learn more about it at Dr. Greenspan’s website here. 

The issue I have right now is that ABA seems to be the only option. Parents and scientists have successfully painted other interventions as “not scientifically based” and therefore not credible or eligible for funding. The reason ABA is so “scientific” is that therapists record meticulous data on how many times their students successfully complete a task (anything from learning to label objects to establishing eye contact to requesting desired items). One of the problems I have with ABA is that its’ most loyal adherents are blinded to the efficacy of other methods of reaching kids with autism. Not only that, but ABA seeks to make kids fit a mold that we as a society find acceptable. How? By forcing the children to make eye contact, even though it is quite difficult and even painful for many. By extinguishing self-stimulatory behaviors (stims) like hand-flapping or pacing. You may be thinking, that’s wonderful! If the kid is flapping wildly, other people will look at him funny and he won’t be socially accepted. But, as the Friend 2 Friend program puts it so beautifully, stims serve a purpose for people with autism and we all have stims. (Mine is hair twirling and leg-bouncing, Robert’s is flapping, John’s is pacing, Dad has several and Joe’s is messing with his fingernails.) What if you were sitting in traffic, late for work, and needed to calm yourself down? Some people might twirl their hair or bite their fingernails or yell at other drivers or rock back and forth. What if someone wouldn’t let you?

This stuff is important because it dictates the way we educate people with autism. Would you want your kid to go to school, be sat at a table and not allowed to move until he completed certain tasks? Before you say that’s what all kids are supposed to do, I’ll tell you that many kids with autism have sensory-processing issues that can make sitting still excruciating. Practitioners of ABA don’t even acknowledge the sensory-processing differences and refer to sensory integration therapy as “quack science” or refuse to address it altogether. Or would you want your kid to be rewarded with a Cheetoh every time he did something right and nothing when he did something wrong? (Many therapists use edible ‘reinforcers’ for kids with autism. I won’t allow it with my son.)

All this matters because the only ‘autism programs’ here use ABA. Exclusively. And I don’t believe in it, I’m sorry. I believe some of the principles of ABA can be used successfully to help many children with autism, but it is not a “cure” and it is not the only intervention available to us to reach and teach our kids. And the next time someone shoves the “only scientifically-proven, peer-reviewed autism intervention” card down my throat, I’ll be sure to remind them that Lovaas’ data included years when he utilized ’subversives’ on his subjects. To his credit (as well as researchers who work with him), he has eliminated the use of such subversives today. But the data frequently quoted by the ABA-only camp includes a time when those subversives were used. If you have the stomach, you can read this 1974 interview in Psychology Today with Lovaas.

I’m not feeling very peaceful but I hope I will find it. And I hope you will too.

What my kids are teaching me. . .

Since my husband and I made the (very difficult) decision that I would homeschool, there haven’t been many free minutes in the day. I’ve always wanted to be a teacher and always respected the profession, so much so that I didn’t think I would be capable of educating my sons with their different ages, needs and abilities. It is not easy and I’m still finding my footing. I wish more than anything that I could find a suitable school program for the boys that teaches more than just what is required to pass a standardized test, where they would feel socially welcomed and included, and that wouldn’t cost the equivalent of my husband’s 4 years at Georgia Tech in tuition. Sadly, I don’t think any such program exists here currently.

I’ve gone through my own stages with this. The first was anger and resentment (as expressed in my last post) – how could these Florida politicians show their faces knowing their school system is discriminatory and serves no one well? Why should parents be forced to create alternatives? The second was a bit of excitement – I can do this! The boys will get an awesome education! We’ll fill our time with fun and creative activities they’ll love and have play dates for socialization! Then, reality – I’m too exhausted to have play dates, plus the nearest people we know live an hour and a half away. Creativity requires energy and I haven’t got any. Trying to make things interesting and keeping the kids engaged is hard work. Should I let them work together or will that cheat the oldest or challenge the youngest too much? I still don’t have the answers to these questions, but I’ve learned a lot in these first weeks as ‘Professor Mom’.

First, there are so many resources for home education on the internet that it’s overwhelming. You could teach an entire year of school with the resources on pbs.org alone. We’re lucky information is so readily available, but I need to employ some kind of internal filter to avoid the ‘drinking water from a fire hose’ feeling. Second, I do love the freedom from a rigid schedule. I see the school bus pass our house just after 7 every morning. When we lived in Vancouver, it was a struggle to get them out the door by 8:30. I have no idea what state of alertness they would be in if they were at school at 7:30 (eating lunch at 10:25 am, no less). When I called to make dental appointments, I was able to take the earliest one because we didn’t have to worry about conflicts with school. Also, I plan to take our ’spring break’ when my parents visit at the end of February, something they may have waited to do if the boys were in traditional school.

But the most important thing I’ve learned so far isn’t about schedules or materials. It’s that my kids are really, really smart. I’ve always tried to be hands-on, helping with homework and studying for tests, but this is a whole new level of involvement on my part. I’m seeing with my own eyes what I’ve always believed. My son Robert has all the hallmarks of autism – very delayed language, social difficulties, anxiety and lots of ’stimming’. Most people would have no idea what he’s capable of doing. I found myself looking at his math curriculum (called JUMP Math) and thinking, “How am I going to teach him this? There’s no way he’s going to understand this.” Then I sit down with him and show him how to do it once. And he does it. By himself. Fast. Almost effortlessly. Sometimes he’ll do 5 problems with 5 minutes of stimming in between.  I don’t think any teacher, no matter how good or patient, could wait or anticipate or learn his patterns the way I have. I hope he will benefit from it.

For Joe, I have enjoyed taking things that were previously difficult for him and breaking them down into a way that’s easier for him to understand. He learns quickly but struggled with the distractions of 28 other classmates and was always too embarrassed to ask for help. I want him to feel good about himself, his own intelligence and his ability to learn. 

Things seem to come pretty easily to John so far. I sometimes worry that I’m not challenging him enough. It’s also hard to keep him focused, motivated and interested. I can’t imagine teaching a classroom full of kids like John! But I can clearly see the benefit of some of his obsessive tendencies – he’s already memorized the Presidents, their dates of service and their political party, not to mention the state capitals. (Having been in Canada for 3 years, I thought we should catch up on some US history and geography.)

My biggest fear is that I don’t want to cheat my kids out of a great education. It’s the foundation upon which they will build their future. I can’t let them down.

Peace.

Professor Mom.

In the back of my mind I probably knew it would come to this, but that doesn’t make it any easier. Faced with some pretty grim options, my husband and I decided that I will, at least temporarily, homeschool our three sons.

I’m not one of those parents that feels supremely confident in my teaching ability – I’ve always wanted to teach but never earned a degree in education. There are systems in place that make it easier now, especially on the web. And while I’m trying to stay positive and see the benefits, I can’t help feeling resentful. This is the year 2009 and the state of Florida, along with many others, is still in the dark ages when it comes to autism education.

My husband likes to tease me about my constant threats to “write a letter.” If we get poor service at a restaurant, I’ll write a letter! If a contractor rips us off, I’ll write a letter! If a school system is so bad that I can’t find one within a 15-mile radius that all my children can attend, I’ll write a letter! Maybe this time I will write that letter. I’ll address it to our newly-elected President, Governor Charlie Crist, the state department of education, Senators Mel Martinez (R) and Bill Nelson (D) and officials from Orange County Public Schools. I have a few questions I’d like to ask them.

1. Do you realize that public schools in Florida discriminate against children with autism?

Our local middle school told me frankly that they could not support Robert and that he would be sent to a nearby public school with an “autism program”. So I have a new test when evaluating “autism programs”. Would Sasha and Malia Obama be sent to a classroom in this kind of condition? With these kind of teachers and this kind of staff? Would Senator Bill Nelson have placed his (now adult) children there? Or Senator Mel Martinez? (The answer for Senator Martinez is obviously “no”, his children attended or are preparing to attend a local Catholic high school where tuition for ‘active parishioners’ is a relative bargain at $8,700 per year.) Would my friends and family with typically-developing children send their kids there? I can tell you the answer in all these cases is a resounding HELL NO.

And if it’s not good enough for any of those kids, then it’s not good enough for my child with autism, either.

2. Do you realize that private schools in Florida also discriminate against children with autism?

We did extensive research into private school options for our kids. Not only are the majority of these programs prohibitively expensive for families like ours with three kids, but no private school that was not strictly an “autism” school could support my son, Robert. That includes so-called religious schools of every denomination. Apparently none currently has a ministry for the most vulnerable among us.

3. Isn’t ‘School Choice’ inherently discriminatory?

Theoretically, school choice allows families to move their children out of “under-performing” schools and into “better ones”. “Better ones” usually means schools that have higher test scores on the FCAT. What often goes unsaid is that schools with high FCAT scores are very likely teaching nothing else. Not only that, but teachers in these schools are under such constant pressure to produce students with strong FCAT scores that they oppose inclusion of any stripe for children with special needs. They have no time or frankly, incentive, to teach any child with a difference. It also means these “good schools” are quickly filled to the brim by kids coming from “bad schools.” And if the kids in the “bad schools” have no one to advocate for them, they’re stuck and they receive an inferior education. Is that okay?

As a side note, we have family members who are in a “lottery system” (I am not making this up) that will determine whether their child will be able to leave his poorly-performing school. I guess education in Florida is all about the luck of the draw.

4. Do you honestly believe Charter Schools effectively address these issues?

I suppose my answer to this one is obvious, so I won’t belabor the point too much. While some charter schools look great on paper, they are still inherently discriminatory. Charter schools get to make their own rules, making it impossible to evaluate each one by a standard. I found a charter school that boasted inclusion of students with special needs. Even though the school is roughly 15 miles from my house, I was hopeful that all our kids could attend. But even this school couldn’t support my son Robert. 

You may be thinking that my son needs too much support to be in a mainstreamed environment. Four years ago I might have agreed with you. But for the last three years I watched him flourish in a fully-supported and fully-inclusive mainstream environment. He was treated the way any Senator or Governor or President or parent would want to see their child treated at school – with respect, firmness when it was warranted and kindness. So from now on, I expect nothing less.

Peace.

Priorities.

On Tuesday, I visited our public middle school’s autism program. My son Robert was placed in “autism programs” (self-contained autism classrooms) from the time he was diagnosed in 2001 at age 4 until we moved to Vancouver, BC at age 9. While in Vancouver, he was mainstreamed in typical classrooms with a 1-1 special education assistant (SEA). I was so happy with his progress during those years and it was a relief to go into IEP meetings and be told, without asking, what would be provided for his support. It always met or exceeded my expectations and I am not complacent when it comes to my kids. When there were issues, other SEAs stepped in to pick up the slack and help. So I knew when we moved to Florida that it would be different. Let me tell you how different it is.

As I mentioned previously, I was really impressed by the director of the program when I met her at the IEP meeting. There were a few alarm bells but I wanted to see things for myself and make sure I wasn’t over-reacting (which I sometimes do). What I saw can only be described as grim. The autism wing is a long hallway that is segregated from the rest of the school. The sensory room was the best part, with lots of equipment for sensory regulation that my son really needs. But I was dismayed when the director referred to the children filing into the room as “our lowest-functioning.” As if they were carburetors instead of kids!

As we walked down the hallway, we entered each classroom and met the teachers. Again, the director referred to children as “lower-functioning.” The classroom she recommended for my son is taught by the mother of a son with autism. She seemed genuinely kind and I wondered if she could make up for some of the short-comings of the rest of the program. That notion was dispelled when she darted back to the table to grab the potato chips from the boy with whom she was working. The potato chips were being used as a reinforcer for him. In other words, if he performed a certain task, he was rewarded with a potato chip. I don’t want to judge here, but I won’t allow food to be used as a reward or punishment for ANYTHING. Perhaps that was the only way that child could learn. But it still made me sad. The rest of the children, there were 4 or 5, were scattered about the room, one laying on the floor, a couple at computers. But the two para-pros in the room sat in chairs at the back, not interacting with the students and looking as if they’d rather be getting a root canal.

Not to demean the children in that classroom at all, but Robert spells at a grade 6 level, he reads and does math. He has nice handwriting, does beautiful artwork and is a computer whiz. Why did the director believe he belonged in a classroom where no other child could even talk to him? Then we went to a computer classroom where the class Robert would eventually be placed in (if the teacher thought appropriate) was working. According to the director it was a “higher functioning” class. Again with that label. The kids looked genuinely kind. One Korean girl with thick glasses smiled and asked, “Who is that?” I thought she was so sweet but the director dismissed her inquiry. I could see the computer programs being used and they were pre-school to kindergarten level. And these are middle school students!

I told the director we just moved from a place that practices full inclusion and asked her if there were any programs in our county that did the same. She informed me that the elementary schools are usually inclusive but at the middle school level, “the work gets too intense and they can’t keep up academically.” At that point, I wanted to bite her. In an inclusive environment, children with autism work on the same topics, modified for their individual level. This program is apparently quite happy with keeping these children at their lowest common denominator instead of seeing each for his/her unique potential.

This particular school and program have been held up to me as some of the best in the county. Are they kidding? Those poor kids are literally withering on the vine. I’m willing to bet that many of them, with the right intervention, could go on to live productive and perhaps even independent lives as adults. They will never have that chance. And of course I can’t advocate for people who don’t want to be advocated for. Some parents may think the program is wonderful, a place their children can go for 6-7 hours a day and be supervised and somewhat occupied. But there is a whole lot of potential being squandered because some district bureaucrat decided it would be more efficient to lump all these kids with autism or behavioral disabilities into a sequestered wing of the public school and justify it because they offer speech and OT. Robert would literally be better served at home with no program at all than go to this program. Of course he will have a home program as I’m beginning to believe that is the only truly beneficial option for him. 

How do senators, governors or representatives of both parties from the state of Florida show their faces when their educational system is so utterly contemptible?

Peace.

What am I going to do about it?

Yesterday I had two IEP meetings for my sons in their new Florida school. I met the director of the autism program, a very impressive woman from Massachusetts who has a doctorate in exceptional education. She said all the right things about the school’s program – they have a speech therapist who visits each class for 30 minutes per day, an occupational therapist on staff in the school, a computer lab and sensory room, and a “peer mediation” program that facilitates interaction between typically-developing kids and kids with autism. She assured me there is a strong focus on academics in addition to social and communication skills.

I asked about discipline because I became alarmed when a Google search yielded story after story of autistic children in Orange County (our county) being placed in excessive restraints. I was told they use a certain method (the acronym escapes me) but that they will never use prone restraints – that’s saved for the school’s safety officer if necessitated by a violent situation. That’s when I felt a huge pang of homesickness for our school in North Vancouver. Never, ever, in three years of IEP meetings, was the word ‘restraint’ used.

What you should understand about Robert is that he is not an aggressive kid. He can be a “runner” – he doesn’t have the kind of impulse control you’d expect from an 11 year old. It’s more like a very young child who sees something he wants and takes off in that direction. He doesn’t do it out of malice but because of interest. In this school environment, there is a very real possibility that Robert will be restrained to keep him in a certain place, even against his will. I’m no fool, I know that sometimes kids with autism must be prevented from hurting themselves and others. I know the school needs a formal process and safeguards in place to protect themselves from injury or litigation. But at some point during the conversation, for the first time in a long time, I worried that my son would be treated like a label instead of a child.

I asked about the other students in the school, their attitudes and interactions with the kids on the “autism wing”. The answer was telling. The peer mediation program provides the opportunity for students to “come back and spend time with” kids with autism. The peers receive special training which I think is great, but I don’t yet know the nature of the training. Apparently this privilege is reserved only for “gifted students” who can “afford to be pulled from a regular class.” It does not sound at all like an attempt to build reciprocal friendships but rather to provide some exposure to typically-developing peers. I have two kids with autism. I don’t know about you, but I would be intimidated as hell if I were a kid and went to a classroom full of kids with autism. That’s the beauty of inclusion. Robert was in a class of about 25 kids. Every child was encouraged to interact with him in a natural way. Some embraced it more than others which is completely understandable. But he made true friends. Friends he misses. Friends I miss!

But my favorite part was the comment that the teachers in the school “don’t mind” having the kids with autism in their classrooms for brief periods of time with a para-professional. How generous! And for teachers reading this, I respect your profession profoundly and I know how hard your job already is. I believe teachers make all the difference, even in the worst districts or worst schools. But the idea that we’re doing someone a big favor by allowing autistic children (or children with any disability) to participate in their school community has to stop!

So now the words of my friend and fellow parent of an autistic son, Heather McCracken, are echoing in my ears. When she lamented the lack of social programs and emphasis on true friendships for kids with autism in schools, she was asked, “Okay, Heather, what are you going to do about it?” Her response was to start an amazing organization called the Friend 2 Friend Social Learning Society. I had the opportunity to work with the group when we lived in Vancouver and saw first-hand the positive impact of de-mystifying autism, encouraging the acceptance of differences and fostering true, meaningful friendships. It looks like we’re in desperate need of that here in Florida.

So the question becomes, what am I going to do about it?

Peace.