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.

‘Warm Fuzzies’ and ‘Cold Pricklies’

My oldest son had one of the best kindergarten teachers in the world and she had a saying that encouraged the kids to use nice words when speaking to each other – to give ‘warm fuzzies’ instead of ‘cold pricklies’. It’s stuck with me all these years so I’ve decided to write about the things that give me warm fuzzies and grrr. . . cold pricklies.

A heart-felt warm fuzzy goes to Universal Studios. We recently purchased season passes for our family as we’ve moved to a location that’s very close to the park and all our boys love the rides, shows and characters. I asked about the availability of express passes for purchase. Express passes allow you to enter a separate line, cutting the wait time for most rides and attractions to less than 10 minutes, even if there’s an hour wait or more in the ‘regular’ line. For many kids with autism, waiting is EXCRUCIATING. It’s painful. It’s impossible. And it goes without saying that we try to avoid places where we will be required to wait in one place for an extended period of time. To my delight (and amazement), Universal offers express passes free of charge for families of children with autism. Had we been required to purchase the passes, it would have cost $125 for our family per visit. And if we were unable to get the express passes, we would probably never visit. I’ve heard of similar programs at other theme parks and attractions so it never hurts to ask. We will now be enjoying many days at Universal with all of our children thanks to their foresight and generosity.

I don’t have any cold pricklies yet, but next week will be my sons’ IEP and placement meeting with the new district so I’ll reserve the right to revisit this soon.

Happy New Year and Peace.

The Dichotomy of ‘School Choice’. . .

There’s nothing like a lightning-fast cross-country move to take you out of the blogging habit for weeks at a time! We’re beginning to settle in here in sunny Florida and I’m ready once again to tackle issues affecting our family and thousands of others as we live with autism.

A good education is one of the most important factors in helping kids lead healthy, balanced and productive lives. As our family has relocated from one of the most responsive school districts I’ve ever experienced (a few issues notwithstanding) to a state notorious for its educational woes, I’ve had to force myself to give this system time and a chance to work. It’s not easy.

I’m going out on a limb here, but I think the concept of ’school choice’ is one of the most destructive ideas I’ve ever encountered. Here’s why.

On its face, the idea of allowing parents to choose the school they want their child to attend is appealing, especially for families with special needs. Some may prefer specific resources available at one school versus another for their kids. Or they may want to move their kids out of an “under-performing school” or a school with social problems (gangs, bullying) or a school with poor leadership . . . the list goes on. I prefer not to think in terms of race and/or socio-economic factors but I know that’s a big pull for some families.

I believe the concept of ’school choice’ allows governments and districts to escape accountability for the difficult problems that they simply don’t have the resources, knowledge or political will to fix. Allowing families to leave ‘under-performing schools’ (usually those in rural, inner-city or poor areas) straps schools and systems that are already struggling. I find it unbelievable that in 2008 in America, school funding is based in large part on property tax revenues, thus ensuring a continuing cycle of poverty and poor educational options for generations. In Florida, schools receive “grades” and funding based on standardized testing results, providing a powerful “disincentive” for schools to take on kids with learning, behavioral or developmental disabilities. The result is an educational culture that ‘teaches to the test’ (the FCAT is Florida’s Comprehensive Assessment Test), eschewing creativity and cultural instruction for rote memorization.

From the South Florida Sun-Sentinel, December 7, 2008:

Officials with the Florida Department of Education say these are examples of rote memorization trying to masquerade as creativity. And they are signs that some teachers are having students memorize a collection of phrases and sentences to use on the FCAT, rather than teaching them how to write their own original essays.
 

They’ve spotted the nervous marshmallow, the flowery descriptions of swirling colors, the wings, the blinking eye and the “poof” transporting kids into distant lands numerous times on fourth-grade exams, for example.
 

The practice is creating “Stepford Writers,” who view writing as a “fill-in-the-blank exercise” rather than a way to showcase their own ideas and skills, department officials fear.”
 

FCAT scores are the holy grail of education in Florida. Schools tout their “A” grades and “5-Star Status” on their websites and billboards. But these rankings are pretty useless for the parent of a kid with autism. Because of their near-singular focus on test scores, many of the ‘high-quality’ schools reject any type of inclusive education, choosing instead to segregate kids who are ‘different’ or ‘disruptive’ from the student population. Not only does this deny the student with special needs an equal education, it also denies the general population the opportunity to learn, understand and ultimately accept those who are different from them.

One of the ways Florida has tried to address the complex and systemic problems in the public education system here is to encourage charter schools, a topic I will be re-visiting a lot in the future. Another concession, specifically for families with special needs is the McKay Scholarship. The scholarship allows any family of a student with special needs to apply that student’s state funding to a school the family deems is more appropriate for the needs of that child. It’s theoretically awesome, but what if there aren’t any great alternatives? What if you have to go 30 miles out to find a school that can actually teach your autistic kid? What if you have other children whose needs are different but must also be considered?

These are all things that we’ve had to consider as we debate placement for our three sons. It is MUCH more complicated and frustrating than even a generation ago and it’s wrong and inefficient on many levels. We’ve heard there is a local public middle school with an “autism program”, one of six such schools in our county. Fortunately, it is very close to us. We will be investigating the program in the coming weeks and I will share more about the alternatives I’ve found. I believe all public schools should be “good schools” and it’s a crime against current and future generations of American kids that they aren’t.

Merry Christmas.

Peace.

Hanging on for Dear Life!

I’m convinced that somewhere up there, someone keeps a cosmic balance sheet and when I start feeling too secure or too comfortable in life, they say, “Wait a minute, this one’s feeling pretty self-satisfied. . .time to shake things up!“ 

When I picked up my boys from school yesterday, John was in the nurse’s room, tears streaming down his face, begging to go home and “never come back!” Robert came bounding out of his classroom and barreled into me with his customary hug and shouts of “Hi, Mom!” He was followed out by the aide who works with him part-time and the look on her face said it all. Apparently he’d been quite defiant, hyper and generally uncooperative throughout the day. He’d crawled under the bed in the nurse’s room for 20 minutes and refused to get out. (Yes, the same nurse’s bed where John was crying later.) He’d loudly refused to do his work. He’d run through the halls flapping his hands and fairly skipping while humming loudly to himself. In other words, his autism was showing.

At one point, while trying to get Robert to actually sit in a chair for more than 5 seconds so I could talk, I found myself surrounded by 5 people: both boys’ teachers and aides as well as the principal, filling me in on all the gory details. They were all so kind and concerned. But I didn’t know how to respond so I just looked at them and said, “We’re falling apart.” I know it sounds melodramatic but that’s how I felt and it was all I could say.

I’ve noticed some changes in John (who is less impacted by his autism) and Robert over the past couple of weeks and it’s obviously happening at school, too. John has been “perseverating hard” as I call it – full of anxiety and clinging to routines and things he did as a younger child to try and comfort himself. One such perseveration is to take pieces of paper, write the names of his fellow students (he memorizes these the first day) and then arrange the paper, or ‘desks’ to mimic the way they are in the classroom. I think it feels good to his brain to create this visual and orderly view of the classroom which can be a distracting and chaotic environment for him. Robert has been over-active, pacing, skipping, flapping his hands together so hard the fingers pop and verbally stimming to the point where he doesn’t stop talking for 2-3 hours straight.

Clearly, something is up here.

Trying to figure out what may be driving these regressions is an exercise in frustration. I can think of 100 things it might be – puberty (God help me), the seasonal change, the high expectations, my own anxiety, the location of Jupiter on the planetary map, you name it. I suspect it’s a combination of factors. John is working with new aides this year and is becoming more independent. He’s growing up and for someone who so profoundly dislikes change, he is doing a beautiful job of it. But sometimes it all gets to be a bit too much and he needs time to ‘reset’. For Robert, I suspect his growing body may be demanding even more sensory input than it did previously and that the high expectations from us (his family) as well as his teacher and aide, are causing some kind of inner chaos for him right now.

Oddly enough, Robert’s language has blossomed in unbelievable ways throughout this particular period. He says these sentences to us and we just look at him in amazement because he sounds like a ‘typical kid’. A speech therapist once told me it isn’t uncommon to witness behavioral regression along with language progression. It’s almost as if all the available resources are being sent to the brain and the self-restraint, body and impulse controls take a leave.

As we walked home yesterday, I hugged John and tried to comfort him. I told him things will be okay and that we would enjoy a nice, long weekend. I assured him that his teacher really DOES like him and believe in him. And as we talked I did a pretty fair job of convincing *myself* that things will be okay. He went off to school this morning without complaint and I’m holding my breath until it’s time for me to pick up the boys, hoping that today was a better day.

Peace.