A Letter for the Relatives this Holiday Season-Special Needs Parenting

Dear Readers,
baystateparent's contributing writer, Sue Lovejoy of Holden, wrote a strong special needs story for our November 2008 issue entitled: Hosting the Holidays: When Little Guests Have Big Needs. Her very helpful story on how to welcome families with special needs children into your homes this holiday was inspired by the following letter.
We hope it helps you this holiday season.

The following letter was written in 1999 by Viki Gayhardt, mother of two teens on the Autism Spectrum and Autism Family Support Specialist for The Family Place, a program of Easter Seals, NH. It takes the perspective of a child on the autism apectrum, providing a clear overview of the challenges that individuals with autism may face during the holiday season.
-Sue Lovejoy, contributing writer to baystateparent



Dear Family and Friends:
(by Viki Gayhardt)
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that
might help our visit be more successful.

As you probably know, I am challenged by a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD). Autism/PDD is a neurodevelopmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: Some may not speak, some write beautiful poetry. Others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you — I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people — I just have to get up and move about. Please don’t hold up your meal for me — go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky — I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired.

Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable.

When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things — just please be patient with me, and understanding of how I have to cope.

Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “self regulation,” or “stimming.” I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown ups call this “perseverating” which is kinda like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.

Please be understanding of Mom and Dad if they let me “stim” for awhile as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being overprotective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules.

I am a unique person — an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!

New England Center for Children to Name its Aquatic Center After Former Governor Michael S. Dukakis

This morning, the New England Center for Children (NECC®) will honor former Governor Michael S. Dukakis by naming the newly-constructed aquatic center for children with autism on the school’s Southborough campus after him.
NECC will formally open the “Michael S. Dukakis Aquatic Center,” the first building in Massachusetts to be named after the former Governor, with a planned dedication ceremony marking the occasion this morning.
Governor Dukakis and his wife, Kitty, was expected to be in attendance with nearly 200 friends and supporters, including Senator John F. Kerry, Lieutenant Governor Timothy P. Murray, and NECC CEO and Founder Vincent Strully, Jr.
When NECC was founded nearly 33 years ago, Michael Dukakis was serving as the newly-elected Governor. He believed that children with disabilities should not be confined in institutions, but should live in communities. His administration was instrumental during the mid 1980s in assisting NECC during the implementation of its community-based model of education for children with autism. Governor Dukakis’s leadership as Co-chair of the Capital Campaign for the aquatic center is testimony to his unwavering support and belief in the mission of NECC, said a press release issued from the center.

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STUDY: Low Birth Weight Associated with Autism, Especially in Girls

From the June issue of Pediatrics, the peer-reviewed, scientific journal of the American Academy of Pediatrics ... comes a new study about autism.

"Low birth weight was associated with a 2.3-fold increased risk for autism, with the strongest association seen among low birth weight girls.

In the study, “Birth Weight and Gestational Age Characteristics of Children With Autism, Including a Comparison With Other Developmental Disabilities,” researchers examined the records of 565 children with autism born in Atlanta, Ga., from 1986 to 1993, and matched them to a control group. They found the risk for autism was consistently higher for low birth weight girls than for low birth weight boys.

For all low birth weight children, the risk of cerebral palsy, mental retardation, hearing loss or vision impairment was higher than the risk of autism.

Researchers hypothesize that some girls are more likely than boys to require a prenatal insult, such as reduced growth or preterm birth, in the causal pathway leading to autism."

Source: Pediatrics

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8th Annual Give Children A Chance Gala toBenefit Pioneering Autism Program

With Autism Spectrum Disorder rising in prevalence and receiving significant national attention, parents thankfully have more options than ever before to enhance the social and emotional development of affected children. MGH YouthCare has long been a leader in this field, pioneering skill-based programs for toddlers through teens and offering children with Autism Spectrum Disorder the chance to develop social and friendship skills in a safe and supportive environment. Through their summer camp, career skill development program, social skills groups, parent groups and school consultations, YouthCare has empowered hundreds of kids and their parents to make healthy decisions and lead fuller lives.
Each year, YouthCare hosts a gala fundraiser, “Give Children a Chance.” Its eighth annual installment, which will take place May 29 at 6 p.m. at the Moakley Courthouse in Boston, will be hosted by KISS 108’s Billy Costa and will feature Jimmy Buffet cover band The Baja Brothers. Event co-chairs David Long, Stephanie Long, Tim Sweeney, Tom Hamilton and Terry Hamilton are expecting more than 300 guests for this year’s event. Says Terry Hamilton and her husband Tom, best known as bassist for Aerosmith, “Ever since attending our first YouthCare event more than five years ago, we knew this was a cause that needed our support. MGH YouthCare gives kids a place where they can enjoy activities with their peers and be themselves without being bullied or teased, and that is so important for a young kid.”
Says D. Scott McLeod, Ph.D., executive director of MGH YouthCare, “Allowing children on the Autism Spectrum to build skills in a supportive and engaging environment is the surest way to prepare them for a productive, fulfilling life. It is thanks to our generous donors that we continue to be able to deliver high-quality care to hundreds of children in need.”
For more information about attending the gala or about sponsorship opportunities, contact Deb Shapiro at 617-724-2818. To find out more about MGH YouthCare, access www.mghyouthcare.org.

About the Massachusetts General Hospital: Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of nearly $500 million and major research centers in AIDS, cardiovascular research, cancer, computational and integrative biology, cutaneous biology, human genetics, medical imaging, neurodegenerative disorders, regenerative medicine, transplantation biology and photomedicine. MGH and Brigham and Women's Hospital are founding members of Partners HealthCare HealthCare System, a Boston-based integrated health care delivery system.

WEEKEND PICK: Sunday's Walk Benefits Autism Resource Center of Central Massachusetts

This Sunday, April 27 consider taking part in The Autism Resource Center of Central Massachusetts' 2008 Community Walk for Autism Awareness from 1 to 3 p.m.
To register, visit www. arccm.org/reg08.pdf
The event will be held rain or shine at Quinsigamond Park in Worcester.
April is National Autism Awareness Month, and the organization is also hosting a family celebration that day from 3 to 5 p.m.
For more information visit http://www.arccm.org/