Where Where Where?
That’s the question I keep seeming to run into among parents: Where to live to get the best possible services for an autistic child? Over at About.com, Lisa Jo Rudy asks where should families move for better autism resources and notes that “in the United States, autism resources vary radically from state to state, county to county, and even town to town.” (She notes that she has heard “good things” about New Jersey (where we live now; my husband is a native); Minnesota (where Charlie was diagnosed); and North Carolina (where Charlie has yet to visit….). Today’s Atlanta Journal-Constitution also asks “where are the best schools for autism around Atlanta.”
And needless to say the search for a school to educate autistic children is hardly limited to the US. While I’ve heard of parents from around the world moving to the US for schools, more autism schools are being opened around the world. Here are some in Asia: In China, Ma Chen, who has an autistic daughter, has started three autism schools in China. In Thailand on Koh Samui, Emma Dyas is hoping to start a school for children with autism and other educational needs; as she wrote here earlier:
There are currently no educational facilities for children with autism on Samui and to send their children to schools elsewhere is simply too expensive for most Thai families. With this in mind we are trying to assess the possibility of changing this. We would like to set up a non-profit school for children with autism and other special educational needs on Samui at no, or minimal cost to the parents of these children. This idea is in it’s most formative stages. So far we have a suitable site ( our current location that we will be moving from next year), however we will need the following; corporate sponsorship to cover the costs of running and appropriately outfitting the school and Teachers and other experienced staff. Any information on organizations that could help us, or any individuals who have any ideas, information, would be interested in working with us or have experience to share would be most gratefully received.
There are autism schools elsewhere in Asia, Open Door in New Delhi, founded by Merry Barua, and the Milal School in Seoul, South Korea.
We took the chance and moved from the Midwest back to New Jersey after hearing about the state’s private autism schools. Charlie was not able to get into one of these, and we’ve moved a number of times to find the public school district with the right program and services for him, and hope that our current school district will be the one to see Charlie through all the way into adulthood. We’ve been fortunate that circumstances that we’ve had the resources to do this; I think that Charlie being an only child has made these moves easier (not that they’ve been easy!). And—keeping mind the current shortage of housing for disabled adults here in New Jersey—I’m not at all sure where Charlie might end up living as an adult.
Where where where……
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POSTED IN: Asia, China, Education, Family, Living Arrangements, New Jersey, Parenting
17 opinions for Where Where Where?
C. S. Wyatt
May 2, 2008 at 6:07 pm
I am presenting at the Autism Society of Minnesota tomorrow on the topic of selecting (and surviving) a university setting. The advice, in the end, is much like that for any student and family: find what feels right to you.
I’ve read people suggesting one state over another, but even the best states have pockets that lack good services or such limited space for students with special needs that you hope to win the equivalent of a lottery to access the best educational setting.
I’ve had great experiences in California and mediocre experiences in Minnesota. Yet there are a lot more options for *private* (read: expensive) services in Minnesota. You can find a specialist for almost everything. But, the charter school for ASD students and even general special education are sadly struggling in Minn.
If you have money and a profession with some mobility, you can try to live near an Edina, MN, or an Irvine, CA. Otherwise, you hope for the best while demanding better from your state, county, and city school officials.
Linda
May 2, 2008 at 7:20 pm
Is it shortage of housing or shortage of providers?
Kristen
May 2, 2008 at 8:14 pm
My son has Asperger’s syndrome and we live in Hanover County Virginia (near Richmond). We are very fortunate to have the public schools that we have here.
My son just started in the head start program and the school district has been so helpful. The IEP was very easy and they took our concerns and suggestions seriously. They even classified him as autistic without us even asking. They have set up occupational therapy twice a week (for sensory integration dysfunction), and also have brought in a writing specialist (he is afraid to put marks on paper).
I would encourage parents to look, there are some good resources out there; maybe not in places you would think (rural Virginia).
Kristina Chew, PhD
May 2, 2008 at 8:25 pm
@Linda,
A lack of housing literally.
@Kristen, thanks—that is very heartening. Very best.
Marla
May 2, 2008 at 9:55 pm
We have moved many times as well. Indiana is not the best place in my opinion for any type of special needs services. New Jersey was much better.
Of course compared to some foreign countries we are thankful for what our community has in comparison. And yet, I would not settle for it which is why we homeschool.
It is sad that parents are many times forced to relocate and live in less than desirable locations for schooling. We even moved several times within our own town for the varying school districts with no luck.
We know some people who moved from Israel for better services in New Jersey for their Autistic son.
It seems no matter where you live you will hear people who are pleased and people who are not. I have often wondered if some of this is parents making things more difficult? An attitude that nothing is never good enough? I know we have been accused of expecting too much from the school systems M has been in. Granted, I think trusting that the school could get her on the right bus and home safely would go without saying and we had two schools mess that up here. Sometimes even simple safety issues have forced us to move to different districts. It is all so frustrating. We grew so tired of the constant advocating required for just day to day things.
Bonnie Sayers
May 2, 2008 at 10:09 pm
I have contemplated moving, but within the same city - Los Angeles and with two kids on the spectrum there is a lot to consider.
Changing SSI offices, changing social workers and offices with IHSS, might be a different regional center where services are harder to get (camp funding is only two RCs), school district for middle school for Matt and then the high school Nick wants to go to is the Los Angeles Zoo magnet.
We cannot go to the valley because that is not all part of LAUSD. Plus utilities are paid here, but there are all singles in the area and as my kids get older I want new digs - been 10 years here in August and too small.
Karen
May 2, 2008 at 10:36 pm
We live in Castro Valley, CA and the CV Unified School District has been a dream. I feel VERY lucky to be here.
Kristina Chew, PhD
May 2, 2008 at 10:42 pm
@C.S. Wyatt,
Am very curious about your presentation—hope it goes well. We lived in St. Paul and had friends in the suburbs near Edina and suspected that there would have been more for Charlie there—as it was, we received some speech and OT from the city for a year and paid for ABA at home by ourselves (with a lot of help from relatives). After a year we moved out of Minnesota, but I think we would not have been able to St. Paul in the long run.
C. S. Wyatt
May 3, 2008 at 12:34 am
I can say that a move of “only” 80 to 100 miles when I was seven years old changed my life. The school I attended in Bakersfield had decided I was slow and had little respect for my parents.
We moved to a rural area in the mid-1970s and by luck ended up with some incredible support from the specialist at the 1-3 (no K) school I first attended. To this day, I thank that specialist and consider him a hero.
Schools within districts can vary, so I never feel comfortable when parents here ask what I have heard. Sometimes, it is even the chemistry of the parents, teachers, and student that leads to various results.
It doesn’t get easier, I realize, and will always admire the parents who have to be advocates.
My presentation notes are online.
Pete
May 3, 2008 at 12:39 pm
I know of a family that lived in Iowa and narrowed down their relo to Portland, OR and Bedford, NH. They chose NH. Knowing the research they did, I was actually surprised about New Hampshire, given the yankee frugality that still persists here…we have no state income tax and schools are primarily funded through local property taxes…nevertheless, some towns, like Bedford, have very good SPED programs. For us it was dumb luck…we moved here without children and now with 4, one of whom is autistic, we are fortunate to have decent public school resources….I couldn’t imagine having to discern this today.
Kristina Chew, PhD
May 3, 2008 at 12:46 pm
Really glad to know it has worked out! The irony for us has been that, turns out the town in NJ that has offered a good program for Charlie, is where my husband Jim’s parents have lived for 30-plus years. As Jim likes to say, who woulda thunk……
Bonnie Sayers
May 3, 2008 at 1:28 pm
To CS Wyatt - I used your presentation link for my site under College Planning and Workforce Preparation:
http://www.bellaonline.com/subjects/9841.asp
If you know of any other resources for that area please let me know.
Annie
May 3, 2008 at 2:44 pm
One dynamic of the “where where where” that I’ve experienced is that when people go where the services are, then the services can get overloaded. That dynamic has been in play in Wisconsin, one of the states offering intensive autism services for children under age 8, by means of a Medicaid waiver program. It was great to live here or move here with a newly-diagnosed child during the first few years of the program, I’ve been told! Unfortunately, the waiting list for those wonderful services (which of course have the greatest impact when started as early as possible) is now over 2 years long, probably mostly due to increased diagnosis but also fueled by people coming where the services were. Our Wisconsin-born daughter was diagnosed in December of 2006 at the age of 2 1/2 and we’re hoping to FINALLY begin intensive services this August at the age of 4 1/4, a lot quicker than anyone who’s going on the list now will get them. Somehow there’s got to be a better way… we tried very hard to get an insurance coverage requirement passed this year to help share the load, but that’s going to take another attempt and perhaps a different set of legislators.
(By the way, I absolutely don’t blame or resent anyone who moved to Wisconsin in the quest for services for their kids. More power to them, and I’m sure that on the whole, the state benefits greatly from the dedicated, motivated families we’ve unintentionally attracted in this way! But the funding has to keep up with the demand for the services, or the whole thing breaks down.)
Anna Kennedy
May 3, 2008 at 5:04 pm
I really thought services for children and adults were much more advanced in USA however I have discovered after speaking to many mothers on myspace website in some cases it is probably worse than UK.
I have 2 boys with autism and my husband has a diagnosis of Aspergers syndrome and after being rejected by 26 school within an hours drive of we we live we decied to set up our own. Where 90 children now attend and it has been deemed a Centre of Excellence. It was a long hard struggle and I have written my first book Not Stupid. Title was because my eldest son constantly use to repeat he was stupid. Not anymore.
Not too sure if World Autism Day had the impact I expected how about in the USA?
Anna
Autismville
May 4, 2008 at 7:37 am
We moved to MA from Texas for our family last year due to my husband’s job. It was like moving to another planet. Services for my son in Texas were non-existent and I would assert that this is the norm rather than the exception.
Our IEP team here really seems to understand Jack and his educational needs. It still feels surreal…
Autismville
May 4, 2008 at 7:38 am
edit out the “for our family” in sentence one of my previous post. Need my second cup of coffee..
Anna Kennedy
May 5, 2008 at 5:13 pm
I KNEW MY BOYS WEREN’T STUPID
Anna set up a special school for her own autistic children
By Sadie Dodds
IN desperation, Anna Kennedy remortgaged the family home to set up a school for her two autistic sons when teachers said they couldn’t be taught…
Anna Kennedy has to pinch herself when she surveys the 100 staff and 86 pupils at Hillingdon Manor school in North London. For she is not just the school manager and mother of two of its pupils, she was the brains behind creating the place.
The parents of two autistic sons, Anna, 47, and husband Sean, 45, a barrister, were at their wits’ end some years ago after their children were rejected from 26 mainstream schools. Unwilling to send them to “institutionalised special schools”, they remortgaged their house and talked Hillingdon Council into granting them the lease on a derelict former school.
“My son Patrick, who’s now 18, was four when he was diagnosed with Asperger’s syndrome – a condition similar to autism which means that although he is intelligent he has difficulty communicating,” says Anna.
Autism affects around 550,000 people in Britain
“He suffers from a lack of empathy, impaired imagination and finds it hard making friends. But he doesn’t have the speech and language delay that comes with full-blown autism. I wanted him to have a proper education that came as close to mainstream schooling as possible.”
Her younger son Angelo, now 15, has far more complex problems. As a toddler he was diagnosed with autism, a brain disorder that impairs his ability to relate, communicate and interact.
“When the boys were diagnosed, I sat in the consultant’s room thinking, ‘Oh no, both my boys have autism, what have I done wrong?’ But you can’t blame yourself,” says Anna.
Five years ago Sean was also diagnosed with Asperger’s.
“We began to suspect it because some of his quirks were similar to Patrick’s,” explains Anna. “Living with a husband who has Asperger’s hasn’t ever been a big deal – I’d assumed his constant thirst for knowledge and structure was part of his personality. That’s the man I fell in love with and his symptoms don’t affect our day-to-day lives.”
The couple are very philosophical about the likelihood the boys inherited disorders from their father. “There isn’t anything we could have done about it. Research into the chromosome that may cause it to be inherited is, as yet, inconclusive,” says Anna.
“I’d dreamed of idyllic days on the beach and picnics in the park but autism snuffed out all those aspirations.
“Angelo is locked into his autism. You can’t have a conversation with him and he has no sense of danger. He doesn’t sleep either, which was terrible when he was young.
I’d spend my nights with him as he ran up and down his room letting out high-pitched screams. I was exhausted.”
She is far from alone. Autism affects around 550,000 people in Britain and four times as many boys as girls. While some sufferers are highly intelligent, others have severe learning difficulties.
Although there is no cure, sufferers can be trained to develop basic skills in communication and how to interact with others. But Anna struggled to find a school that would accept her children.
“Patrick went to a mainstream infants’ school for 18 months. Every day he screamed and shouted when we got to the school gates,” Anna recalls.
“I had to endure pitying looks from other parents as I sat with him in the school corridor until he’d calmed down. It was very distressing and eventually the headmistress told me, ‘We can’t cope with Patrick anymore.
“Meanwhile Angelo had been going to nursery and was getting one-to-one support but when it was time to go to school nobody could meet his tutoring needs.”
For three years Anna had both boys at home while she and Sean went through the soul-destroying process of approaching 26 schools in a 10-mile radius and being rejected by every one.
“Patrick and Angelo were having five hours of tuition at home,” says Anna. “I remember Angelo’s first tutor sitting on the carpet and crying after a few days. She’d never dealt with a severely autistic child before.”
In 1997, Sean and Anna turned their garage into a classroom to create a more school-like environment. Then they set up a support group, Hillingdon Autistic Care and Support.
“It’s such a lonely condition that we needed to share our experiences with parents of other autistic kids. We started with six members but now have 275 families.
“During that time I met Alex who had a grown-up son with Asperger’s. He felt his son had never had the schooling he’d needed and it planted an idea in my mind: if there wasn’t a school out there that was right for my boys, then I’d just have to create one.”
Having found the derelict school building nearby Anna, Sean, Alex and other friends presented a case to the local authority for saving it from demolition as a school for autistic children. They won a unanimous decision from the councillors: they could have a 30-year lease on the building if they carried out refurbishments estimated at £637,000.
“We remortgaged our house and Sean took redundancy from his job as an IT manager at Thames Water,” says Anna.
“In fact we did the work for a fraction of that cost. Among the parents of other autistic children were plumbers, carpenters and decorators. In September 1999, after 18 months of hard graft, Hillingdon Manor School opened.
“There were 19 children including Patrick and Angelo and we’d recruited teachers by advertising in the Times Educational Supplement. Each child had what’s called a statement of special educational needs, which meant they had funding from the local authority.”
Nine years on, Hillingdon Manor has 86 pupils aged three to 19 and the school is a centre of excellence. Anna has also helped set up the Old Vicarage Residence where autistic adults can live, plus West London Community College for 18 adults with autism and Summacare outreach support agency to help families with respite carers.
“Recently, three of our pupils achieved 21 GCSEs between them, which is terrific,” she adds proudly. “There is a ratio of one teacher to every eight pupils and the principal specialises in autism, educational psychology, speech and language therapy.
“We follow the national curriculum but tailor it to each child’s needs and also include lessons in movement and relaxation since autistic kids struggle with both. We even put some through the Duke of Edinburgh award scheme.
“Patrick has grown into a strapping young man who would like to study drama at mainstream college when he’s 19. He socialises with his friends like any normal 18-year-old and I can see him getting married one day and having a career and a family.”
Though Angelo has improved he’ll always need one-to-one care, says Anna. “Eventually I’d like him to go into supervised living so that he can experience a degree of independence, but I’ll want him close to us.”
While throwing herself into creating a better life for her sons and others like them – and writing a book, Not Stupid, on the subject – has Anna ever had any time just for her?
“Because Sean also has Asperger’s, I sometimes feel very lonely as he, Patrick and Angelo can be so locked into their own worlds,” she sighs.
“I let off steam by tap dancing on Thursdays but I haven’t had a glass of wine in years as I always need to be alert because Angelo is so erratic. We haven’t had a holiday since a disastrous trip to Disneyland Paris years ago. Angelo went walkabout and it took four hours to find him.
“Somehow, though, we’ve managed to have a reasonable life in our own way. Sean and I never used to go out but in the last year my mother-in-law and the children’s aunt have babysat so we could go to the theatre, which was a revelation I hope we’ll repeat soon.”
** Not Stupid by Anna Kennedy (John Blake publishing available amazon)
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