December 9, 2010 9:31 pm Published by QSAC
Imagine being alone,
Alone and unable to speak,
Alone and in an unfamiliar place,
Suddenly an orphan?
This scenario describes what happened to Bradlee. Last May, Bradlee was left alone in a hospital, possibly facing life in an institution. He is 24 years old, severely autistic – non-verbal.
But QSAC was determined to help Bradlee rebuild his life… A life worth living to its fullest.
Here’s his story: Bradlee’s mother died when he was a young child. He was left with one relative and one friend: his father, a loving and protective man who provided home schooling and kept Bradlee away from structured programs. They were inseparable.
On May 22, Bradlee’s father fell ill and called 911. When rescue workers arrived, he had already passed away. They brought Bradlee to the hospital to figure out what to do with this young man. A nurse found a QSAC business card in his father’s wallet and called us. Bradlee had been receiving a host of services from QSAC since 2000.
QSAC employees immediately went to the hospital and brought a letter board that Bradlee uses to communicate as well as his favorite food (he and his father had an extremely strict routine which involved only foods from specific restaurants). For nearly two weeks, QSAC employees returned twice daily to the hospital for lunch and dinner, with food and books to read him. QSAC remembered the mention of an uncle somewhere on Long Island, with whom all contact had been lost for almost 20 years, and started the search for the lost relative. QSAC also worked closely with the Queens DDSO to
find suitable housing placement for Bradlee. Within two weeks, temporary placement was found in family care; QSAC had located the lost relative and offered immediate enrollment into its Day Habilitation program.
Today, Bradlee’s home placement has been made permanent; aunt, uncle and cousins are rebuilding the family unit they once shared. He has adjusted beautifully in his QSAC Day Habilitation program, thanks to the staff that so diligently helped him with the transition. We often see him smile!
I am proud of my staff. I am also humbled because it is your financial support that enables us to nurture an environment conducive to the successful delivery of services to give Bradlee an immediate spot in our day hab program, or purchase a communication board or bring him the books he likes.
We urgently need your support today to continue to offer Bradlee and others like him a life full of possibilities, with exercise and recreation equipment, field trips and special activities as well as adaptive technology such as touch screen monitors, adaptor keyboards and software. These things will make the future bright for Bradlee. Can you imagine all the things your generous contribution could bring to numerous others in need?
On Bradlee’s behalf – and that of the many people whose lives are changed by the programs you make possible – I thank you for your steadfast support and the motivation it gives us to continue.
Happy Holidays to you and your family.
PS1: More than 85% of all monies go directly to the services we provide. According to the Chronicle of Philanthropy, this classifies us as an “A” rated charity.
PS2: Ten years ago, our colleague, Anita Smith, lost her life… She was 22 when she was brutally murdered along with four others at Wendy’s in Queens. Anita was training for a career working with children with autism and about to start college. The Anita Smith Memorial Scholarship Fund allows Anita’s good will and determination to live on in perpetuity. Please consider an additional anniversary gift to the Anita Smith Scholarship Fund. It will make a significant difference in the lives of deserving students pursuing a degree in a human services field, for example in special education, psychology or sociology. They are those who will care for Bradlee in the future.
PS3: You can make your donation directly at www.qsac.com/appeal. Thank you.
EIN # 11-2482974. Potential contributors may obtain a copy of QSAC’s financial report from the Attorney General by writing to the Office of the Attorney General, Department of Law, Charities Bureau, 120 Broadway, New York, NY 10271, or directly to QSAC Inc., 253 West 35th Street – 16th Fl., New York, NY 10001.
December 9, 2010 8:37 pm Published by Anne Denning, MA, BCBA, Director of Training
The holiday season is here: Everyone is busy shopping for gifts, company is coming over, school is out…The holiday season is magical for some, but can be hectic for a family with an autistic child. Christmas, Hanukkah, Kwanzaa–whatever your personal celebrations are, there is a lot to take in when you have a child on the spectrum. For children with autism this time of year can be particularly overwhelming: lights, crowds, traffic, visitors, waiting in line – this upsets children who are used to a particular routine. This time of year brings the autistic child and the entire family out of their usual routine and exposes them to people and places that they may not be familiar with. This can create a host of problems, including increased stress levels for all involved.
Social requirements such as relatives wanting a hug or a kiss can be overwhelming for your child. Holiday dinners can be especially difficult – your child may be expected to try new foods or sit for long periods of time with a lot of people and a lot of noise. Your child may not understand personal space or safety and may run around the house or try to play with something breakable. If your child cannot communicate what he/she wants tantrums might ensue. Relatives may think that the child is misbehaving, and may try to discipline the child, not realizing that the child really can’t help it, and that discipline is not helpful when it comes to sensory overload and high anxiety.
Now is a good time to take a deep breath and make some very specific plans that will help you get through this period. What can you do? With some preparation, planning and information sharing, the holidays can be less stressful and more enjoyable. Here are some tips on how to prepare your friends and relatives whom you will be visiting the next few months more easily.
Like any behavior we are trying to increase, behaviors we want to see during the holidays need to be practiced and reinforced. Creating similar situations to holiday events where your child can be reinforced is a good start. For example, you can place a wrapped gift in front of your child and prompt him/her to wait or keep hands down and reinforce this behavior. You can reinforce your child for keeping ornaments on the tree. At the beginning of the holiday’s establish these types of clear “holiday rules”. These rules tell your child about your expectations and should be positive. Use “do” statements rather than “don’t statements”. For example “hands down” rather than “no, stop touching”.
Remember your child’s needs. Try not to have unrealistic expectations for your child when visitors or relatives are over. A little advanced preparation can lessen your child’s anxiety. You can help your child by trying to keep his/her usual routines. Try to keep mealtimes and bedtime the same. Ask if there is a quiet room if you are at a relative’s house where your child can retreat for some quiet time to escape the commotion and noise.
Holidays can be confusing from your child’s point of view. You can also prepare for the holidays by thinking of them in terms of activities that occur before, during and after the holidays. Examples include cleaning the house, getting decorations out, taking photos, shopping, buying a tree, starting school vacation, taking decorations down and writing thank you notes. Providing information in a way that your child understands is essential. Give your child lots of information, for example, mark special days on the calendar. Use picture symbols to support routines and aid in communication. Use social stories – these personalized stories can be used to incorporate what will be happening in the days ahead. Include photos of who he/she will be seeing or the house decorated during last year’s holiday season. Play some of the music he/she may be hearing at this holiday season. Some other behaviors you can work on to prepare your child are practicing unwrapping presents – wrap a bunch of boxes up with favorite treats inside and have him open them to get to them. Practice a handshake . Practice tolerating sitting at table.
Also, where will you be spending the holidays? Call or email your extended family or friends and let them know what your plans are and what you need from them. Make decisions based on what is truly best for your child. Call in advance and discuss specific details of the gathering. Who will be there? Do all of the people in attendance know your child? Does everyone know what Autism Spectrum Disorder is? Are they comfortable and familiar with your child’s special needs? Cover all your bases several weeks in advance by writing a group email or letter to those who will be in attendance. Let them know the things that your child is uncomfortable with, but also the things they are particularly fond of.
Remember, it’s up to you. With a little advanced planning the holiday season can be enjoyable for you and your child.
Below is a sample letter you can use
HOLIDAY LETTER TO RELATIVES AND FRIENDS TO PROVIDE INFORMATION
ABOUT YOUR CHILD AND AUTISM
“Dear Family and Friends:”
This was written for the purpose of it being sent to relatives, friends, and hosts of holiday gatherings that might need a crash course in what to expect from their guest with autism. This letter is written as if the autistic individual person is writing it personally.
Dear Family and Friends:
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 to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment 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.
Thanksgiving & Christmas are the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only that 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 misbehaving 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 is 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 grownups 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 kind-a-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 respectful to my 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 over protective, 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!
*Author, Viki Gayhardt
December 7, 2010 8:12 pm Published by Kristen DuMoulin, Ph.D.
A new brain-imaging study by Yale School of Medicine researchers have identified a distinct pattern of brain activity that may characterize the genetic vulnerability to developing autism spectrum disorder (ASD) and could eventually lead to earlier and more accurate autism diagnosis.
Using functional magnetic resonance imaging (fMRI), researchers scanned the brains of children with autism and their unaffected siblings, as well as those of typically developing children as the three groups watched animations of biological movement.
The study included 62 children aged 4 to 17.
The team identified three distinct ‘neural signatures': trait markers — brain regions with reduced activity in children with ASD and their unaffected siblings; state markers — brain areas with reduced activity found only in children with autism; and compensatory activity — enhanced activity seen only in unaffected siblings. The enhanced brain activity may reflect a developmental process by which these children overcome a genetic predisposition to develop ASD.
Martha Kaiser, a postdoctoral associate in the Yale Child Study Centre notes, “This study may contribute to a better understanding of the brain basis of ASD, and the genetic and molecular origin of the disorder.”
The study is published in the Proceedings of the National Academy of Sciences.