school districts struggle to meet autism needs
September 30, 2009
Some data to support the importance of my last post - pulled from the below linked article:
“In the past, estimates were that 75 percent of children with autism were also intellectually delayed or impaired,” Silva said. “We know now and research backs up that 75 percent are normal or have close to normal intelligence. We truly believe as we work with every child that they are normal.”
This article supports the need for a Schools for Spectrum - now I just need to get moving!
http://www.pe.com/localnews/inland/stories/PE_News_Local_S_autism28.43a1cc7.html
In Praise of Autism - getting a lot of flack
September 29, 2009
This came out from new york times and there was a lot of discussion in the autism community. There is concern from the autism community that we are sending the wrong message to the world - that individuals with autism can all function at the levels described. We know this to not be true. Many individuals with autism will require 24 hour care and support for the rest of their lives. And, this should be a huge societal concern. However, equally as important, there are many individuals with autism that can thrive in the world and we need to raise awareness to this fact. Our goal should be to take every individual with autism and work hard to get the most out of each person that we can, and to never stop trying. If we didn’t have these examples of individuals with autism who succeed in life, what would be our motivation to keep trying, to keep searching for answers, to keep investing money and resources into each of these individuals? I think this awareness and the concepts raised in this article are terribly important. Of course, my child is a higher functioning individual and does have his whole life ahead of him that I believe is full of possibility. I am one of the lucky ones.
http://ideas.blogs.nytimes.com/2009/09/23/in-praise-of-autism/?hp
From the WA State Dept of Health - Mercury Limits Law Temporarily Suspended
September 25, 2009
Dear Immunization Partners:
Mercury limits law temporarily suspended
Secretary of Health Mary Selecky has temporarily suspended Washington’s
limit on the amount of mercury (thimerosal) in H1N1 (swine flu) vaccine
allowed for pregnant women and children younger than three years old. The
six-month suspension is effective September 23, 2009 through March 23, 2010
and applies only to H1N1 vaccines. It does not apply to seasonal flu
vaccine.
As a precaution, Washington state law limits the amount of mercury that can
be in vaccines for pregnant women and children under three. The secretary of
health can suspend the law when there is a shortage of vaccine or during a
disease outbreak - both criteria apply to the H1N1 vaccine. Some H1N1
vaccine will be mercury-free, but it may not be available at all times and
there may be limited amounts. This could stop children younger than three
and pregnant women who want the vaccine from getting it. H1N1 vaccination
will be voluntary. Pregnant women and children under three are two of the
priority groups to get H1N1 vaccine first because they are at high risk for
serious complications if they’re infected with H1N1 (swine flu) virus.
Notification requirements
It is important to note that when the mercury limits are suspended, the law
requires that certain groups be told they are getting a vaccine containing
more mercury than is usually permitted. This notification requirement
applies to pregnant or lactating women and parents or guardians of children
under the age of 18 getting the vaccine. There is no single notification
method required; the Department of Health has developed a
<http://www.doh.wa.gov/cfh/immunize/documents/samplenotice.pdf> sample
notification form to help you with this. There is also a chart that you can
use providing
<http://www.doh.wa.gov/cfh/immunize/documents/providerchart.pdf> guidance on
screening patients to determine who needs to be notified. The notification
form and other information on the temporary suspension of the mercury limits
for H1N1 vaccine are available online (
<http://www.doh.wa.gov/cfh/immunize/providers/h1n1-thimerosal.htm>
http://www.doh.wa.gov/cfh/immunize/providers/h1n1-thimerosal.htm).
H1N1 Vaccine information
We expect H1N1 (swine flu) vaccine to be available in early October. Health
care providers who pre-registered to get H1N1 vaccine were faxed provider
agreements this week. The H1N1 Provider Agreements must be returned to your
local health agency listed on the agreement. All providers participating in
the Washington State Childhood Vaccine Program were automatically
pre-registered and were faxed agreements. If a provider does not want to get
vaccine, there is a place on the agreement to indicate they do not want to
participate. A signed provider agreement is not a guarantee that a provider
will receive this vaccine. Final decisions on which providers will receive
vaccine will be made by each local health agency. Pre-registration
information is available online (
<http://www.doh.wa.gov/swineflu/h1n1reg.htm>
http://www.doh.wa.gov/swineflu/h1n1reg.htm).
Vaccine listserv
The State Department of Health Immunization Program CHILD Profile is
starting a listserv to share important vaccine information directly with
health care providers and community partners. You can sign up online (
<http://listserv.wa.gov/cgi-bin/wa?A0=WA-IMMUNIZATION-INFO>
http://listserv.wa.gov/cgi-bin/wa?A0=WA-IMMUNIZATION-INFO).
<http://www.doh.wa.gov/cfh/Immunize/default.htm>
http://www.doh.wa.gov/cfh/Immunize/default.htm
Public Health: Always Working for a Safer and Healthier Washington
it’s time to wake up
September 19, 2009
I think it’s amazing actually how little autism is talked about, how few schools are truly preparing themselves for this, and how few parents are willing to bring themselves out of denial - 1 in 150 children are being diagnosed with autism people - WAKE UP!
I guess I can understand wanting to put your head in the sand and keep it there. But, you know, when it comes to our children - not just my children, but all of our children - it is an absolute crime to have your head in the sand. Particularly if you are a school!! You have an obligation to act in the best interest of our children. Parents’ denial is real and complicated. But a school can’t be in denial. And a child with autism is hard to miss if you don’t have your head in the sand.
Why not just let a child with autism go undiagnosed or slide through school without the appropriate supports? Because early intervention can make the difference between a child with autism having the ability to live a full and independent life to having to be supported all of their life. This is a BIG difference and is the reason why we all have the responsibility to do the right thing for these kids EARLY.
Read this! And if you are a school, make sure you are educating your staff about autism and about their responsibilities to all of their students - not just their neurotypical students. If you are a parent, educate yourself about the signs of autism and get your children evaluated by experts if you suspect anything. If you don’t know how to do either of these things, contact me!
Saturday, September 19, 2009
Experts: Prepare now for autism’s rising flood
http://www.eschoolnews.com/news/top-news/index.cfm?print&i=60737
article from Dan Coulter
September 16, 2009
DREW’S MOVING OUT
By Dan Coulter
Drew, our 25 year old son with Asperger Syndrome, is moving out. It’s such
a major event in our lives; it triggers a cascade of thoughts and memories.
Kids grow up, become adults and move out. But not always, and not always in
that order. Sometimes adult children need to move out to complete the
growing up process.
That’s a particular issue with children who have Asperger Syndrome. Even if
you’re trying hard to prepare them to be independent, it’s hard to stop
doing things for grown children living at home that they need to do for
themselves. Particularly when it seems some things won’t get done unless
mom or dad steps in.
So, even if children are not ready to move out, at what point are they ready
enough? At what point will living on their own engage mental gears that get
them to take on responsibilities that their minds identify as “mom and dad
stuff” as long as they live at home?
It can seem like a Catch-22 situation. We think they can’t move out until
they’re managing their own lives, but they won’t have an incentive to manage
their own lives until they move out.
Will Drew’s launch be successful?
My wife, Julie, and I, think it will.
Drew’s doing a lot for himself now, and moving out can be the incentive to
have him pick up the rest. Plus, he’ll be moving just a 10 minute car ride
away. A lot closer than when he went to college a 10 hour drive from where
we lived. In college, Drew learned to get his assignments, finish his
homework and get to class on time without his parents. He made friends and
managed a bank account and took road trips. And he got his bachelor’s
degree in four years.
We’ve learned that Drew does a great job at the things he’s interested in
and excited about. And he’s excited about moving out. He’s taken to singing
a line from a Billy Joel song, “If that’s movin’ up, then I’m MOVIN’ OUT!”
The process has been going well.
Drew’s realtor has a son with autism, and she’s been great. We met her a
while back when her son was in one of the videos we produce. She and Drew
looked at condos and narrowed the selection. Then, Julie and I looked at
the most likely candidates and offered our counsel. While we influenced
Drew, the final choice was his. We’ve been doing all we can to give Drew
the information and advice he needs to make decisions, and then let him make
them. We’re making sure he knows the consequences of different courses of
action and we’re reviewing all the documents before he signs them. We’re
sitting in on key meetings, and took the lead in the price negotiations.
Yes, we’re helping Drew financially, but he will be the sole owner of his
condo, letting him take advantage of the government’s current “first home
buyer” tax credit. Running the numbers, he’ll actually have lower monthly
payments than he would as a renter.
He’s making his own calls to set up his utilities, Internet access and other
services.
The condo he chose is modestly priced, but in a nice residential area.
While Drew has a car, the condo is on a city bus line. If he decides to get
a roommate to help with expenses, the roommate won’t have to have a car.
That’s just an option at this point. Drew acknowledges he’d have to search
to find a compatible roommate.
We’re also gifting him the installation of cork floors. Taking out the
carpet will help with Drew’s allergies, and putting in cork flooring will
help minimize the sound that travels from his second floor unit to the condo
below. Being considerate of neighbors is always a good thing.
Right now, we’re having daily meetings with Drew to discuss each of our
calendars and to-do lists. We’re hoping making to-do lists and keeping a
calendar will become habits for Drew, although they seem to be hard habits
for him to get into. We’re talking about continuing our meetings after Drew
moves out, perhaps weekly, as a safety net to help ensure he remembers to do
things like manage his finances and do home maintenance.
He’ll be using automatic transfers to and from his checking account for
some deposits and payments, but even then, he’ll need to check his
statements to make sure they’re accurate.
There is a bit of the silent, “I told you so,” building in my head. Not
that I want to say those words to Drew, but I look forward to having him
learn on his own the value of initiating the things we’re now reminding him
to do. Sort of like grandparents looking forward to having their children
tell them they now appreciate what it takes to raise a child.
And yes, no matter how much you’ve prepared your child to move out, you can
look back and wish you’d done more. But in those moments, it’s easy to
forget all the other things you were dealing with that also demanded your
attention. Few of us can devote all our time to preparing our children to
be independent. So, we do our best, and launch them knowing they have to
learn some of the ropes on their own.
We’ll see Drew more often than once a week. In addition to his part-time
job working at the public library, he’ll continue to work part-time for
Coulter Video, our video production business. Since completing his second
college degree, (a two-year degree in accounting) he’s been looking for a
full-time accounting job. It’s a difficult task in this economy, but he did
find an unpaid accounting internship to gain experience, and he’s doing some
accounting work for Coulter Video.
He’ll continue to work with his job coach in the TEACCH organization and our
state vocational rehabilitation department to seek the Holy Grail of a
full-time job with benefits.
For the employment DVD we’re now completing, we interviewed a number of
people with Asperger Syndrome who are working full-time. They’re highly
productive, valued employees. Several are living on their own.
Moving out is a big step for Drew. When it’s complete, we’ll all focus on
the next step of full-time employment. We know others are doing it.
We know he’s capable. We know how proud we are of all he’s accomplished.
With persistence and support, it’s just a matter of time.
Life’s calling.
ABOUT THE AUTHOR — Dan Coulter is the producer of the DVD “Asperger
Syndrome at Work,” which is scheduled for release in October, 2009. You can
find more articles on his website: www.coultervideo.com.
seeing the light at the end of the tunnel?
September 13, 2009
Another great week. Every day this week, another one of his teachers stopped me in the hall at drop off or pick up to tell me how amazing he is doing. Everyone is astonished. I don’t know how long the super star student is going to be here. But I do know that I have had a glimpse of what the light at the end of the tunnel looks like. And, it feels good to know that it’s there. When you start down this path of autism/asperger’s, you don’t know what the future will hold. Every child is different and the experts can’t tell you exactly what will happen. For now, we’re continuing to take it one step at a time. His teaching assistant started this week. She will be charged with collecting a lot of data so that when we pull any support for him, we’re sure he’s really ready. And, there are a lot of little things that we need to work on that we’ll be beginning this week - like helping him to make choices, helping him to recognize faces, etc.
who is this boy?
September 4, 2009
What a great week at school. My son was almost unrecognizable. Even without a teaching assistant, he entered the classroom on his own, got started on his work, listened to the teacher, followed instructions, completed his work. Amazing. Who is this boy?
All I can say is 1) thank God that I have a child who is able to make progress, 2) ABA therapy works, 3) what an amazing team he has had, and 4) all of the hard work over the summer is paying off.
That’s not to say that this year isn’t going to pose major challenges and hardship - oh, don’t I know that those days are coming! But, I am just grateful that he had such a great week. And, I am grateful that I had this week to get that glimpse of what he can be like. What a gift!
first day!
September 1, 2009
They did great today! Neither one even required that I go into the classroom to get them settled or to say goodbye. My son even ran upstairs on his own saying goodbye to me on my daughters floor and he did the whole process himself. Boy, has he grown!
When I peeked in on my daughter, she had her water bottle and supplies all nicely organized on her desk and she was all ready to go! She saw me peek in and she blew me a kiss because she found the little note I left for her in her desk when I was at Parent Night.
My son had his cute little quirky smile on his face as the teachers were telling me/him what a great job he did starting his work independently, following the rules, listening to instructions, etc. He did great!
And, it looks like I may have found his TA. I will wait to get too excited about this however until the day comes when she is actually in the classroom!
Hooray!
