Helping Parents of Kids with Autism Handle the Unique Challenges of the Holiday Season

The holiday season is a joyful time, but as we all know, it can also be incredibly stressful. Nobody appreciates this more than the parents and families of children with autism, who already face unique challenges.

Routines and structure are more difficult to maintain during the chaos of the holidays, and kids with autism must deal with new faces, places and a disruption of their schedules. And, since many children with autism are also sensitive to noise, touch and light, the din of the holidays can become disorienting and overwhelming. This can mean a new level of stress and anxiety.

The following are tips provided by medical experts, educators and families of kids with autism. Several of the professionals and parents are available to discuss these and other ideas for making the holidays more fun for everyone involved:

Plan ahead whenever possible. Compile a list of activities that can help your child fill his or her time wherever you go.

Use rehearsal and role play to give children practice ahead of time in dealing with new social situations, or work together to write a “social story” that incorporates all the elements of an upcoming event or visit to better prepare them for that situation.

If you are going to visit family or friends, make sure there is a quiet, calm place for retreat.

Keep an eye out for signs of anxiety or distress, including an increase in behaviors such as humming or rocking – they may indicate it’s time for a break.

Engage kids with autism in repetitive activities such as stringing popcorn for trimming the tree.

Practice unwrapping gifts ahead of time, which will help a child with autism learn the understanding and the meaning of gifts.

Take toys and other gifts out of the box before wrapping them. It is more fun and less frustrating if a child with autism can open the gift and play with it immediately.

Try to relax and have a good time. If you are tense your child may sense that something isn’t right.

Get a list of gift ideas for relatives from your child’s teacher and therapists.

Don’t shield your child from the extended family. Family members need to understand the challenges you face.

Take pictures when you and your child trim the tree, visit relatives, open gifts, etc. Make a book about your holiday by gluing the pictures onto construction paper, writing a short sentence under each picture, and stapling the pages together. When someone asks your child a question regarding the holidays, your child can use the book as a visual cue to help tell about the things he or she did.

Tips provided by: Dr. Gary Goldstein, clinical scientific advisor for Autism Speaks and president and chief executive officer of the Kennedy Krieger Institute; Dr. Fred Volkmar, director of the Yale Developmental Disabilities Clinic; Dr. Melissa Nishawala, clinical director of the Autism Spectrum Disorders Service; Dr. John Brown, Director, Reed Academy; Dr. Ivy Feldman, educational director, The McCarton School; and Diane Marshall, mother of a son with autism

Autism and the Holidays: Sensory Overload

 

How to prepare children with autism for the holiday season

From last minute shopping trips to holiday parties and  family gatherings, the holiday season is often a stressful time for parents.  But for children with autism spectrum disorder who rely on structure and   routine, the hustle and bustle of the holidays can be extremely unsettling, according  to experts from Bradley Hospital.

 

This is particularly true for children who also have sensory processing issues and may be overwhelmed by the overabundance of lights, sights, sounds and smells during the holidays. This distress can often impact the entire family.

 

“Maintaining the current structure and routine for your child may not always be possible during the holidays, but there are ways to help reduce your child’s anxiety while increasing your family’s enjoyment of the holiday season,” says Rowland P. Barrett, PhD, director of the Center for Autism and Developmental Disabilities at Bradley Hospital.

 

Barrett says the key to preparing for the inevitable changes that come with the holidays is to provide the child with early cues of what will be taking place. For some, this might require depicting with words or pictures exactly what will and will not occur at each event.

 

Barrett also offers the following tips for making the holidays more fun for everyone involved:

 

 

Visiting

“If you will be visiting relatives or friends, let the child know in advance where you are going, who will be there when you arrive, what you will do when you are there, and  the time you plan to arrive and leave,” Barrett says. “Follow the same protocol if relatives or friends will be visiting your home. Parents may also want to ensure that a quiet area has been identified where the child with autism can go and relax if the activities become too overwhelming.”

Holiday shopping

Holiday shopping with a child who has autism spectrum disorder may present its own set of challenges, especially when the stores are crowded and noisy. “Make a list that identifies the items you’re shopping for and do not roam the stores trying to decide what to buy,” says Barrett, who adds that keeping the trip short and being organized will help minimize the potential for the child to become overwhelmed and have a “meltdown” in the middle of a store.

Decorations

Holiday decorations inside the house – including bright and blinking lights, wreaths, trees, candles and stacks of presents – could be areas of concern.  Barrett says parents know best what their child with autism enjoys and at what point things may become overwhelming. However, he adds that parents should not expect higher tolerance simply because it is the holiday season.

Preparing siblings

Since the holidays are a time for the whole family to enjoy together, Barrett says it’s important to make siblings aware of how stressful this season can be for their brother or sister with autism. Before the holiday season begins, he suggests parents take the time to remind children of their sibling’s sensory issues, communication difficulties, low frustration tolerance and likes and dislikes. Parents can then share the family’s strategy for avoiding potential issues and discuss what they will do if their best efforts are unsuccessful.

“We often put pressure on ourselves to make the holidays perfect, which is unrealistic. In the end, the most important thing to remember is that the holidays are a time to cherish one another and the joy of being together,” Barrett advises. “Whether it’s scaling back or starting new traditions, celebrate in a way that makes the most sense for your family and is something that you, your child and the entire family will all enjoy.”

The Holidays and I/DD – how to have a healthy happy holiday season

As Clevelanders, we know to take advantage of good weather while it’s here which has led to an abundance of Christmas decor around the city well before Thanksgiving! This has us here at Koinonia thinking about the upcoming holiday season – a season of giving, caring, sharing and let’s face it – it’s fun to receive too!

For some with loved ones with I/DD, the holidays are especially difficult. How do you handle the season with an individual with intellectual and/or developmental disabilities?  The holidays are stressful – noise, stimulation, visitors, the weather…it all adds up fast for typical individuals and can be even more difficult to take for people with I/DD.

Sheryl Frishman has not only thought about this but has a clear plan for her family and holidays.  See if her many tips are ones that could help you have a peaceful happy holiday season this year!

http://www.specialneedsnewyork.com/2012/11/holiday-season-and-your-loved-one-with-special-needs/

Five Benefits to Hiring a Disabled Person – by Emily Comedis

1. By hiring people with disabilities, you are actually hiring focused, dedicated and loyal people. This doesn’t mean that people without disabilities are the contradictory. But a successful organization is often filled with employees who have the right focus and dedication.

2. People with disabilities have some limitation that requires some accommodation, in themselves and potential employers. Thus they often compensate by developing desirable characteristics and attitudes.

3. Employers who hire people with disabilities are actually hiring (and building) specialists.

4. Your first disabled hiree won’t be your last disabled employee. By hiring disabled persons, employers are actually building a network that could be an avenue for transferring special skills. People with disabilities who have mastered special skills and can transfer them to others with disabilities which will benefit your organization.

5. Employers who hire people with disabilities create a positive corporate image. Hiring people with disabilities is not charity. But bringing them into the organization is an exemplary act that models corporate responsibility.

The Impact of Words

The Impact of Words

Can you imagine, for one moment, if you received a letter telling you that the “non-retarded” parts of your child’s body should be gathered up to be used for others, and the rest thrown away?  One family in Ontario did.  By now you may already know the story of the Begley Family and Max, a 13 year old with autism as this heinous letter has circulated all over the internet and newsfeeds for the majority of this week.

This letter from “one pissed off mother” reeks of the discrimination, bullying and lack of education from the community that people with I/DD face daily. How do we fix this? Is it fixable? Even if there are laws and repercussions for expressing such anger and wish for someone else’s life to end as this did, will that stop the inner dialogue and bring about understanding, or just silence the hate? If it is the latter, is that still better than nothing?

Some have debated its authenticity, and even wondered if it was not written by another mother in the neighborhood but instead a young adult or teen. Regardless, it brings to light many questions about how far we have come, and how far we still have to go. Those of us in the field of I/DD have spent decades bringing this population out from the closed doors of the institutions and enforcing the idea of independent thought, and “yes you can” attitudes.  We focus on their abilities vs. the disability and we engage them in LIFE to ensure they are living it to the fullest.

But what have we done to educate the community and prepare it for the next generation which is NOT living in institutions, most likely will NOT move into segregated group homes and will have the desire to be out in their neighborhood, participating in everyday life as the rest of the world does? The answer varies and will still not explain the thoughts radiating from this letter, which seem not only outdated but beyond cruel and lacking compassion. This letter comes from someone who is potentially intolerant of ANYONE who is different, not strictly I/DD people. However, someone with a disability was in his or her life and therefore their designated target – this time.

Is there a positive spin to this story? Of course!  The outpouring from the neighbors (who “one pissed off mom” implied was in agreement with her) shows that Max is in fact welcomed in the neighborhood and with open arms!  Read any online report of this story and scroll to the comments section and you will see thousands of responses from around the globe expressing their lack of understanding on how anyone could write such a thing and treat a person that way.  And that is most encouraging.  The sentiments and understanding that Max is a person, a life.  And that’s exactly what he and his family are doing – living their lives.

Join us at our annual event – Run Walk D.R.E.A.M. to celebrate inclusive communities and success with  citizens of Cleveland, individuals Koinonia supports and anybody who wants to be a part of something BIG!  September 14^th at Cleveland Metroparks Zoo – register today at http://www.koinoniahomes.org

Are you running with the right crowd?

On Saturday, September 14^th, Koinonia will be hosting it’s annual 5K run/1mile walk event at the Cleveland Metroparks Zoo.

What makes this event so special?  You and all the other participants.  Run, Walk D.R.E.A.M. (RWD) is about including people with all levels of ability.  People who have intellectual and /or developmental disabilities, physical disabilities, or no disabilities will be gathering that morning to participate in one event and do so much more than simply “run a race”.  Instead you will be participating in an event which  others are typically excluded from.  Whether you run the 5K distance and race others, or walk the 1 mile and enjoy the sights of the animals at the Zoo, we encourage your participation. 

Show us that  you believe ALL people can Run Walk and D.R.E.A.M. on September 14^th! 

 

Register today!

 

What do you say…

With all of the talk of late, thanks in large part to Paula Deen’s self-destructive faux pas, about political correctness and respecting all minority groups by using more palatable references, it seem timely to clear up some misconceptions about developmental and intellectual disabilities.

1. “Handicapped” and “disabled” are adjectives.  We refer to people with nouns.  So, the appropriate thing to say is “people with a disability”, or “he has a disability” not “she is disabled” or “the disabled lady”.
2. People with I/DD and those who love them are not interested in hearing how sorry others feel for us and/or how courageous we are.  Children with I/DD are no different than you and your children.  They are just as unique, yet equally the same.
3. While the “poster child” approach is effective for raising money, it sets up those with I/DD as objects of pity and promotes inaccurate and demeaning stereotypes.  When looking for services and programs for someone you care about who has I/DD, or when asked to donate to an organization that uses this tactic, consider what you are promoting and how the particular agency views those it serves.  Would you put your elderly parents in a long-term care facility or give money to one that presents itself as the “place to put your soon to be dead loved ones”?
4. Since human beings began to stand upright and walk on just two feet there have been people with I/DD, in every color, race, creed, socio-economic demographic, size and shape.  Those with a disability are composed of literally every type of human.  It is not selective.
5. Those with an intellectual disability are not stupid. They simply develop intellectually at a slower rate.  A low IQ level does not mean an individual is void of special talents, skills and a personality. 
6. Someone’s physical appearance is not an indicator of their disability.  Those who drool generally do so because of a lack of fine motor [muscle] control, not because of a low IQ.  In fact, IQ has nothing to do with both gross and fine motor skills.
7. In case Ms. Deen reads this, never refer to someone as crippled, retarded, nuts, crazy, stupid or dumb.  Never. 
8. People with disabilities consider themselves a minority group, who has the same rights as the rest of us.  Advancements made on their behalf have not been because of society’s compassion and commitment to fairness and acceptance.  Changes have come about because those with I/DD and the families who love them have begun to stand up and advocate for equality and social inclusion.
9. Most people shy away from interacting with individuals with an intellectual and/or developmental disability [I/DD] because they do not feel comfortable conversing and fear they will say something inappropriate.  So, you are not alone.
10. Finally, people with I/DD are, for the most part, kind and caring individuals who want the same things we do.  Do not freeze up. Talk. Engage.  Understand and respect.  Converse.  See the individual—not the disability.

 

 

This piece is based on an article initially written by Dennis Cannon, presented to the Southern California Rapid Transit District in the late 1990s, and updated by Margaret Jakobson on behalf of Disability Rights California.        

Autism: A Skillset the “New” Cleveland needs

In just under a decade, Swedish company Specialisterne has contracted out 35 consultants to 19 different companies.  What’s so special about that?  All 35 of them are people who have autism. Read more about The Autism Advantage.

 High-tech businesses like The Dandelion Project in Silicon Valley are also taking advantage of the unique skillsets folks with autism offer. A recent study released in the November 2012 issue of Scientific American concluded that “tech savvy communities report exceptionally high rates of autism.  And, they see that as a very good thing!

Got to wonder, where does autism fit in greater Cleveland’s efforts to reshape itself as a city of the future?