Every year as Halloween approaches, I have to fight the desire to ignore the bell, bolt my door shut, and drown my sorrows in the bags of Milky Ways and M&Ms I pretended to buy for the neurotypical little goblins who pass my way. Personally I find Halloween to be the most painful time for parents of children with special needs, outside of IEP season that is, if only because those otherwise “ordinary” joys of childhood are paraded around right in front of your doorstep. Since crying in my chocolate will only ruin the chocolate, I have no choice but to laugh. So I thought I’d combine the two most painful things for parents of children with special needs – Halloween and IEPs–and share my thoughts on what some mom’s who may actually like Halloween might say at an IEP meeting.
Children with Special Needs Should Not Be Used As Political Emblems
With 19 days before the election, having just watched the final Presidential debate, it is time for me to publicly weigh in on the issues that are most vital to me. Not surprisingly, among the primary issues for me are education and special education. Senator McCain’s position in favor of vouchers will in no way strengthen public schools, any more than draining blood from a person fortifies their health. Although public schools have much to improve upon, and I will and have fought on a case by case basis for out of district placements; to systemically weaken public education would not make for a better education system and in the process would not help nor improve the lot of students with special needs. It is an ideological position that will permanently and irrevocably leave students with special needs behind.
I have been simmering on a daily basis every time Governor Palin holds up her son Trig as a political symbol. I have to say, that I think all small children should be left out of the political forum, and it is wrong to use an infant with special needs as an emblem of your own personal rectitude. As to her comments that she will be an advocate for children with special needs, this statement rings hollow with me personally. She may be sincere in these statements, but I do not think she realizes how little she knows about what it means to raise a child with special needs, or the daily struggles against deeply ingrained stereotypes about children with Downs and special needs generally.
She has not even begun to know the daily pain of fighting small battles when well-meaning people touch your young child’s head and body invading any sense of personal space and privacy. Or the people who say "is he tired" for the umpteenth time when he is slumped on your shoulder; the reality is that his head control has disappeared that day, and you would prefer to just have a private outing with your family without well meaning intrusions. Obviously, the big arena that she has not experienced at all is the fights over so many things in school. In this life it is important to know what you know, and it is even more important to know what you do not know. She does not have any sense as to how much she does not know. She is not a knowledgeable member of this involuntary club called "Special Needs Parenthood" and I am disturbed that she thinks she is.
Finally tonight when Senator McCain brought up research for autism as a political brownie point, I had to speak out. He has obviously read the statistics from the CDC that 1 in 150 children have autism, which represents a lot of moms, dads, grandparents, aunts and uncles and friends and others that care about children with autism. It is wrong at this late date to shill yourself as a champion for the vulnerable populations of children with autism, when he has no record to speak of before now. Senator Obama and for that matter Senator Clinton have taken affirmative positions on funding and supporting efforts for children with autism.
Children with special needs whether those with Downs or Autism or CP or any other disability are not emblems to be held up for political gain. It is offensive and wrong! If Senator McCain’s voting record with President Bush was not enough to disqualify him for the Presidency, then his use of children with special needs as a political tool certainly rules him out once and for all. I think Senator Obama is thoughtful and steady and qualified, but he has also shown that he is respectful of the people and issues that matter most to me. He has my vote and for what it is worth my hearty endorsement.
[Here is another blog taking a similar perspective on the debate.]
Closing Circles and Opening The World for Children with Autism
DIR which was formerly known as Greenspan/Floortime has worked very well for a number of children with autism that I represent. The following article is from Michele Ricamato, a certified DIR therapist, SLP and a well respected colleague of mine, who has dedicated her professional life to working with children with autism and other disabilities with tremendous results. This article Download ClosingCircles.pdf
is a great overview for parents and others who are interested in learning more about this unified set of therapies that has shown great promise for children with autism.
ADA Amendments Passed and Has Become Law!
The following is a posting from Jess Butler who is an attorney and officer with COPAA.org one of the leading special education advocacy organizations in the U.S. She has summarized and explained the effect of the new amendments for school age children and in later life. These revisions represent a win for people with disabilities.
Painful Failure of the Special Education System
The following is a speech given to a local autism support group. The speech is from the parents of a young adult who was diagnosed as being on the autistic spectrum in his late 20s, after his time in school had passed, and as discussed below well too late to prevent tragic consequences. I publish this with the permission of the parents of this young adult with the hope that their pain may spare others the same tragedy. There are many lessons to be learned from this story: keep a close eye on your student’s use of the internet, social development is often more important than academic, transition planning for self-sufficient and safe outcome can not be emphasized enough, and sex education that is meaningful for students with special needs is even more important than for other students.
You Know You’ve Been a Parent of a Child with Special Needs Too Long When (Part II)…by Lori Miller Fox
This is the second part of the earlier post to get your new school year off to a humorous start.
You choose your child’s medical specialists by whether or not their waiting room has an accessible outlet for your portable DVD player.
You get pulled over by a police officer and automatically pull out your insurance card.
You volunteer to give blood, not because it’s the right thing to do, but because it’s the only time you can have some peace and quiet and then enjoy an Oreo cookie alone.
You can’t even remember your own name, but can recite your child’s current medications and brief medical history in your sleep.
You call having the time to shave your legs, a makeover.
You stare into the ice cream freezer at the grocery store just a little too long, and don’t give a damn what the neighbors think.
Your accountant just assumes you’ll need an extension on your taxes.
You end up putting Pediasure in your coffee, because that’s all you’ve got.
At night you dream of going on a vacation with Oprah and Gayle.
Locking yourself in the bathroom is considered respite.
You wish you only aged in dog years.
You consider shutting off the room monitor “ a night away.”
You request frequent school meetings just so the staff won’t notice how much weight you’ve gained over time.
Your child’s case manager highlights the AM listings on the TV Guide and calls it a transition plan.
You consider your coffee maker durable medical equipment.
You use the timer on your coffee maker as a snooze alarm.
To you, drinking decaf is considered an alternative lifestyle.
You classify having your child get coughed on by another child in the doctor’s waiting room, as a playdate.
You embroider the number “666” on your child’s t-shirt just so unwelcome strangers don’t come up and “bless” your child.
Robotic “Skin” Is a Significant Advance Towards Artifical Eyes and Assitive Robots
One of the things that up to now has held back robots is the ability to have a pressure sensitive "skin" which feels and moves more naturally. A team of Tokyo University researchers has revealed a break through in material science; a rubber material that conducts electricity which would potentially allow for the development of robotic "skin." This new material is described:
"Another possible use being discussed is in robot development. The
material would allow for robots to be much more responsive and
life-like because their entire surface could have sensors since the
electrical power source is everywhere. The day when robots match humans
is even closer, as this material could be the "skin" of the robot human
since it can be maneuvered to do virtually everything our skin does
when it reacts with our surroundings. It seems quite surreal and
perhaps scary, but we are closer to an "I, Robot" type world than some
of us think."
Perhaps a nearer term application of this new material science is the development of a functional artificial eye according to researchers. I believe in the foreseeable future that many motor tasks which create significant obstacles for individuals with disabilities can and will be remediated with the use of robots or robotic components, if not Rosie from the Jetsons.
Tropic Thunder Protests Grow
Buzz Words and Lingo in Special Education
Every field has its lingo and jargon. Special education has more than its share and sometimes the language contains coded or veiled meanings that are hard for parents to discern or decipher. The following link is a useful and sometime humorous decoder ring for the phrases, jargon and lingo used everyday in schools and at IEP meetings. It might be good to bone up on this table of buzz words just in time for the new school year in the Fall.
Thanks to a friend and dedicated advocate Jean Kulcyck for bringing this link to my attention.
Webinar on RTI
Here is a webinar on the every popular topic of RTI from Council for Exceptional Children.
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