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Guest Blog: Clothes Make the Man

January 6th, 2015

Liane Kupferberg CarterOur guest blogger this week is Liane Kupferberg Carter, Writer, Journalist, and Autism Advocate.

(Originally published on Autism After 16)

It’s 51 degrees out. Which means my 21-year-old son Mickey is wearing shorts and sandals.

“It’s too cold!” I protest.

“But it’s May.” Well, yes.

I get it. He hates socks. Loathes sneakers. Long sleeves drive him crazy. If we let him, he’d leave the house wearing shorts and sandals in January, and probably without a coat. Winter weather doesn’t deter him. Which has turned me into the kind of mother who says, “I’m cold so you have to wear a sweater.”

I remember battling my own mother, who forced me to wear skirts with scratchy crinolines (yes, I’m that old.) Is that what it’s like for Mickey when we ask him to wear clothes that itch or cling or rub, or bother him in ways we don’t even know, because he can’t parse the particulars of his discomfort? “Because I hate it,” he says.

I know how miserable I feel wearing Spanx. Is that how he feels about dress pants with a belt? Loafers? A blazer? Worst of all—a dreaded tie? “I want regular clothes,” he says.

I respect his sensory issues. I want to honor his right to choose what he wears. Unfortunately, there are just some circumstances where you can’t wear what you want, and it’s not only due to weather. Sometimes respecting his right to choose smacks up against the need to dress appropriately, whether it’s a volunteer job, visiting a house of worship, going on an interview, or hiking with his day hab group. It’s dangerous to climb a mountain in sandals, and disrespectful to go to synagogue in a t-shirt and shorts.

“Just for today,” he pleads. “I’ll be careful.”

Why am I making a big deal about shorts and sandals? Am I worried someone will say, “How can you let him go out that way?” and judge me as a bad parent? Yes, it’s chilly, but he’s not going to die of exposure if he goes out underdressed for this weather. Maybe if he does realize it’s cold or wet and he’s not as comfortable as he thought he’d be, he will learn from it, and next time wear something more suitable.

Or not.

I try not to intervene with his choices unless health or safety is at stake. I may say, “What do you think your friends will be wearing today?” or “I don’t think those colors match,” but I won’t stop him if he’s really set on the combination. It’s a fine line between encouraging self-expression, and letting him leave the house wearing clothes that may make him an object of teasing or ridicule.

Haven’t I made similarly inappropriate choices? Worn high heels out of vanity, when I should have opted for more comfortable or practical footwear? Shivered in a thin summer dress I wanted to show off, instead of wearing something more sensible?

Mickey is a young adult now. He is chafing against our restraints. His struggle to pull away from us is developmentally appropriate. The business of adolescence and young adulthood is to separate from your parents, to find your own way in the world. Part of growing up for anyone is learning to make—and live with—one’s own choices.

He starts out the door in shorts and sandals, then goes back to his room. When he emerges, I see he has added a baseball cap and sunglasses. “I’m going to sunbathe today,” he says.

“Pack a sweatshirt,” I say. He doesn’t.

“I look handsome,” he says.

“Very cool,” I agree. And resolve to say nothing more.

Because it’s his choice to make. This isn’t about autism.

It’s about autonomy.

 

Learn more about Liane by visiting her website or friend her on Facebook, and follow her on Twitter.


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Guest Post: 2013 Top 10 New Year’s Resolutions, From MyAutismTeam Parents

January 17th, 2013

This post was featured on the blog for myautismteam.com.

With each new year, this is a time to take stock of your accomplishments, or ponder those projects that will make it to the “to-do” list in 2013.

And no New Year is complete without resolutions. Resolutions can take many forms; from the above mentioned project list to personal improvements in ourselves. At MyAutismTeam, we wanted to hear from the parents about their own resolutions. We surveyed over 35,000 parents on MyAutismTeam about their resolutions and what they are envisioning for 2013.

One of the resounding resolutions for parents this year will be to take a moment for themselves. From making an effort for laughter to making time for spouses and exercise, parents recognize that they give their best to their children when they are at their best. While simple in theory, such small acts go a long way, as a study from the Journal of Autism and Developmental Disorders has shown that parents (mothers in particular) are prone to feeling a sense of chronic stress that is similar to that of soldiers in combat.* This stress can often translate into health issues leading to additional stress, etc.

However, parents are taking note. In an effort to avoid and reduce stress, parents are choosing to focus on the positive. Concentrating on their children’s strengths and new therapies, parents are choosing to make 2013 a time to learn. In a year when autism was front and center, parents are also taking action and vowing to be stronger advocates for their children and more engaged in their progress. The top ten resolutions from the survey are listed below.

Top 10 Resolutions for 2013 by Parents with Children on the Autism Spectrum

  1. I will develop my child’s areas of strength.
  2. I will take things one day at a time.
  3. I will be a stronger advocate for my child at his/her school or with healthcare providers.
  4. I will explore new therapies for my child.
  5. I will be part of a strong social network for emotional, social, and informational support.
  6. I will make more time for my spouse and myself.
  7. I will exercise more.
  8. I will start looking at things from my child’s perspective.
  9. I will manage my own anxieties about social situations with my child.
  10. I will be vigilant in monitoring and managing my child’s progress.

In the busy days ahead, don’t forget your resolutions to help you get through to the next. Did your resolutions make the list? If not, share them with MyAutismTeam at http://www.myautismteam.com today.

To follow MyAutismTeam on one of their social media platforms, click below:

  • Blog: http://blog.myautismteam.com

For more information on special needs planning or special needs advocacy, please visit www.specialneedsnewyork.com.

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Celebrate the IDEIA: A Global Perspective

September 28th, 2012

By Marion M. Walsh, Esq.

As we begin a new school year, we must all remember that the Individuals with Disabilities Education Improvement Act (“IDEIA”) is a revolutionary civil-rights statute, unparalleled in any other country or at any point in history. In re-enacting the IDEIA in 2004, Congress found that:

Disability is a natural part of the human  experience and in no way diminishes the right of individuals to  participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.

A glimpse of other countries offers a different picture.  This past year, my daughter traveled in Kolkata, India to volunteer for Daya Dan, an orphanage for  children with disabilities run by the Missionaries of Charity.  My daughter tutored a boy who was approximately 11, who was just leaning his letters and to read, but had no formal diagnosis, no formal teaching, except the volunteers and the nuns.  She tried multi-sensory techniques, sang songs about the letters of the alphabet and helped him with writing and art projects.  He grasped a lot but became easily frustrated.  Yet he was one of the lucky ones, since he had attention, care, shelter and food. But an IEP?  Special education and related services provided all school year?  Not a chance.    By some estimates, only 2% of children with disabilities in the world attend school, with the remaining 98% excluded.

As Americans, while we are rightfully critical of much of our educational system, we should be proud of our progress.  The IDEIA findings note that, before the date of enactment of the Education for All Handicapped Children Act of 1975, school districts were not meeting the educational needs of millions of children with disabilities because, among other reasons, the children were excluded entirely from the public  school system and from being educated with their peers or  undiagnosed disabilities.  The law has been successful in helping to ensure that children with disabilities and the families of such children have access to a free appropriate public education and in improving educational results for children with disabilities.

Of course, we have a long way to go.  Because the IDEIA represents a model for the world, we have to make sure it is working.  Appreciation of the law does not mean that we should not continue to advocate for its continued improvement or settle for less than strict compliance and meaningful progress.  Clearly, the implementation of the IDEIA has many challenges, but let us not forget how fortunate we are to live in a country that protects the educational rights of every student and sets an affirmative duty on every school district in the country to identify students with disabilities and provide a free appropriate public education to each student identified.  In fall 2010, I heard former New York State Education Commissioner David Steiner speak, who described the IDEIA as a model and envy of the world and noted that no other country went to such lengths to protect the substantive and procedural rights of its most vulnerable students.  He stated that in his view, every child should have an IEP.  This is a vision worthy of contemplation.  However, given the political environment, as exemplified by the New York State tax cap and the burdens on schools in doing so, it seems unlikely that such legislative measure would pass.  Still, the IDEIA creates a model of differentiating instruction and serving all student needs. It also important to remember that the IDEIA protects every child and every parent, because, disabilities can develop or become identified at any point during a child’s educational career and every child needs a safety net.

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Governor Amends New York Education Law to No Longer Require Additional Parent Member for CSE

August 22nd, 2012

by Marion Walsh, Esq.

On August 1, 2012, Governor Cuomo signed a Bill which amends New York Education Law 4402 to no longer require an additional parent member for Committee on Special Education (“CSE”) meetings. Before this amendment, New York law required for every CSE meeting (although not for subcommittee meetings), the participation of an additional parent member of a child with a disability residing in the school district or a neighboring school district.

The amended law provides, as with the current law on requesting a physician, that an additional parent member only must be in attendance at any CSE meeting if requested in writing by the parent (or personal in parental relation) to the student, at least 72 hours prior to each meeting.  The school district must provide the parents with written notice of their right to have an additional parent member attend any meeting of the CSE. The notice must include a statement, created by the New York State Education Department explaining the role of having the additional parent attend the meeting.

The amendment goes into effect immediately, but there will be some transition time, until the former law phases out and until the New York State Education Department amends the Part 200 Regulations and issues guidance for school districts.

Effect of New Law on Parent Rights

The Individuals with Disabilities Education Improvement Act does not require parent members as part of an IEP team.  The amended law does not impair the rights of parents, as parents still have the right to request a parent member. More frequently than not, parents waive or decline parent member participation.    However, parents need to be aware of their right to request an additional parent member and pay careful attention to the 72 hour time period.   Parents also need to understand that parent members can serve an important function.

Parents should carefully consider whether they will need a parent member.  Parent members can be helpful to lend perspective and objectivity and, if they are from the District, can offer knowledge and help about District programs.  If you’re attending an initial eligibility meeting for your child, you will be unfamiliar with the process and the associated emotions and would likely benefit from an additional parent member.   If the CSE is considering a more restrictive placement, the parent member may also help you weigh the benefits.  Also, for particularly contentious or emotional meetings, parent members can lend perspective.   Remember, the parent member does not serve as a substitute for a good advocate and is simply participating in the meeting as an additional CSE member.

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