10 ways to make holidays easier for children with developmental disabilities

holiday gifts wrappedThe holidays can be an especially difficult time for people with developmental disabilities. And who can blame them? Changes in routine, different demands, new foods, sounds, textures — what a challenge!

A post I read years ago on the ABA4Autism or other Neuropsychological Disorders blog serves as a good reminder when holiday time comes for our grown son Gus, who has severe and profound disabilities. The post offers tips to make the winter holidays better:

1. Try to keep your child in his or her usual routine as much as possible.

2. Sensory over stimulation — the lights, sounds, smells, and even the relatives who want to hug your child — are the main culprits during the holidays. Eliminating or minimizing these culprits are your best bet. Plus, you may want to talk to your family about how to greet your child when they arrive, too.

3. Instead of limiting the holiday decorations, some families who have children with autism or other neuropsychological disorders wait until Christmas Eve to put up their tree and decorate.

4. Some families let their children with autism or other neuropsychological disorders do all of the decorating. Children with autism or other neuropsychological disorders may line up or stack decorations rather than decorate in the traditional way, but so what. Let them enjoy the activity in their own way.

5. Rather than try to do the Christmas shopping with children with autism or other neuropsychological disorders in a crowded, noisy mall, many families shop by catalogue or online and let the child point to or circle the toys he/she wants. Websites, such as www.stars4kidz.com, offer a variety of toys for children with autism or other neuropsychological disorders. Just type “autism toys” in your search engine.

6. Tactile toys are often a better choice for children with autism or other neuropsychological disorders. Toys that make sounds or involve too much stimulation or are too complex may not cause an aversive reaction in the child. As I mentioned above, there are websites that sell toys designed for children with autism or other neuropsychological disorders. Try ordering some of these toys and then let your child select the ones to play with as they are unwrapped.

7. Talk to relatives before they come over about the best way to behave with children with autism or other neuropsychological disorders. Have them read my article, “What Horses Tell Us About Autism,” which is available for free on this website.

8. Generally, kids with autism or other neuropsychological disorders do better in the morning than in the late afternoon or evening when they are tired. It may be better to schedule Christmas events at these times.

9. The parents of children with autism or other neuropsychological disorders need to relax themselves. Often the child with autism picks up on the parents’ stress and that is enough to ruin Christmas.

10. And last but not least, realize that you are probably not going to have perfect food, perfect decorations and perfect gifts. Christmas with children with autism or other neuropsychological disorders may not be traditional, but it can still have real meaning. (Sometimes I wonder if children with autism or other neuropsychological disorders know that Christmas has become too commercial.)

We’re off to Wisconsin soon to celebrate an early Christmas with our grown son Gus in his group home. I’ll keep some of these tips (especially the one reminding parents to relax!) in mind.

Related Resources from Easter Seals:

Get unique gift ideas for caregivers, which includes parents of children with and without disabilities.

 

8 ways to prevent toy obsession by children with autism

Child with Lego toysAs promised in a previous post, here are some suggestions about gift lists and what to do if your child begins to obsess about a particular gift or toy they want.

  • Make a list with your child of what he or she wants for the holiday.
  • Include the store or website where the gift can be purchased
  • Don’t forget to add the price and other critical information about the gift.
  • Organize the list with a small box at the end or beginning of each item.
  • Share the list with family members or friends who want to “register” to purchase gifts by putting their initials in the box.
  • While you wait for the holidays to arrive, be specific and direct about the number of times each day a child can mention a toy or gift they are obsessing on.
  • Try giving your child 5 poker chips and allow them to exchange one poker chip for 5 minutes of talking about the desired gift.
  • Above all, be clear about your intentions. If you have no intention of purchasing a specific toy, do not tell the child that they might get that gift — it will only lead to problems in the future.

Most important, remember to relax and not get unduly stressed. Your son/daughter may in all likelihood react to that stress. And most of all, have a wonderful holiday season!

 

Airport travel resources for people with disabilities

airplane-file0001305960191Here’s a quick reminder that if you’re flying this Christmas, the Transportation Security Administration (TSA) has ways you can get help navigating airport checkpoints. The TSA’s Passenger Support Specialists Program trains select Transportation Security Officers, Lead TSOs and Supervisors to take on the extra responsibility of helping passengers who may be in need of extra help at security checkpoints. From the Transportation Security Administration website:

More than 2,600 Passenger Support Specialists at airports across the country assist passengers who require additional assistance with security checkpoint screening.

Passenger Support Specialists receive specialized disability training provided by TSA’s Office of Civil Rights and Liberties, Ombudsman and Traveler Engagement. Training for Passenger Support Specialists include how to assist with individuals with special needs, how to communicate with passengers by listening and explaining, and disability etiquette and disability civil rights.

The site encourages travelers who need special accommodations or are concerned about checkpoint screening to ask a checkpoint officer or supervisor for a Passenger Support Specialist to provide on-the-spot assistance.

Travelers can request a Passenger Support specialist ahead of time, too, by calling the TSA Cares hotline at 855.787.2227. Many of you won’t be traveling until next week or so, but since TSA recommends you call approximately 72 hours ahead of travel to give them a chance to coordinate checkpoint support with a TSA Customer Service Manager at the airport, I thought it best to publish this now…happy trails!

 

11 ways to help your child at holiday gatherings

The New Social Story book coverHoliday family gatherings are right around the corner. Here are some tips to help make them more pleasant:

  • Prepare a photo album in advance of seeing the relatives and other guests.
  • Go through the photo album with your child while talking briefly about each family member.
  • Allow the child access to these photos at all times.
  • Know your child and how much noise and activity they can tolerate. If you detect that a situation may be becoming overwhelming, help your child find a quiet area in which to regroup.
  • Prepare family members for strategies to use to minimize anxiety or behavioral incidents and suggest ways to enhance your child’s participation in the day’s activities.
  • Help family and friends understand your son or daughter’s preferences, whether they prefer to be hugged or not, need calm discussions and so on.
  • To minimize behavioral outbursts, coach others to remain calm and neutral if your child becomes upset.
  • Avoid introducing your child to any new demands these next couple weeks — holidays already place extra stress on children.
  • Try to maintain a sleep routine, meal routine, and other important routines.
  • Practice opening gifts ahead of time, taking turns and waiting for others.
  • Role play scenarios with your child in preparation for them getting a gift they do not want.

As for those last tips about opening gifts, I highly recommend using a visual turn taking card to help with that process. the New Social Story Book by Carol Gray (2010) contains a number of social stories on gifts.

Above all, know your child. Know how much noise and other sensory input they can take. Know their level of anxiety and the amount of preparation it may take. Know their fears, and know those things that will make the season more enjoyable for them – and for you. Happy holidays!

 

Looking for special toys for special kids

holiday gifts wrappedIt’s just the first week of December, and the holiday commercials are already in full force. I remember watching all those ads while my son Gus was growing up, wondering if any of the toys advertised on TV would appeal to him. My husband Mike and I spent hours and hours searching catalogs, visiting toy stores, playing at music shops, filing through hardware stores, perusing gift shops, looking anywhere and everywhere to find a toy Gus might like, something he might want to explore.

Therapists told us it was good for Gus to be stimulated by different things. We gave him mobiles, wind chimes, tambourines — anything we could find that was colorful and made noise. By the time he turned 9 or 10, though, we just plain ran out of ideas. And as Gus grew, it was more difficult to muscle him in and out of stores on holiday shopping sprees. I still remember wishing for one place I could go for a list of toys especially good for kids with special needs. With a list like that, who knew? Maybe Mike and I might find something out of the ordinary for Gus, something we would have never thought of on our own.

Toys “R” Us to the rescue! The Toy Guide for Differently-Abled Kids is a free toy-selection guide for parents and friends of children with disabilities. Items featured in the Guide promote the development of specific skills, such as auditory, language, visual, fine motor, thinking and social skills.

Our son Gus is 28 years old now, living happily with three other guys in a group home in Wisconsin. I’m kind of out of the toy-buying loop now, so if any of you readers have other go-to places to find special toys for special kids, please leave a comment. I’m all ears.

 

16 ways to make holidays easier for a child with autism

I am pleased to introduce our new blogger Cathy Pratt. Dr. Pratt is the Director of the Indiana Resource Center for Autism, and today’s post is the first of three we’ll be publishing by her about holiday tips

christmas tree drawingSocial stories and visual supports for the holidays

by Cathy Pratt, Ph.D., BCBA-D

While many happily anticipate the coming holiday season, families with sons/daughters on the autism spectrum also understand the special challenges that may occur when schedules are disrupted and routines broken.

The following tips were developed with input from the Autism Society of America, the Indiana Resource Center for Autism, Easter Seals Crossroads, Sonya Ansari Center for Autism at Logan, and the Indiana Autism Leadership Network. We update our list of suggestions annually, and our hope is that by following these few helpful tips as the holiday approaches, families may lessen the stress and anxiety created by the holiday season and make it a more enjoyable experience for everyone.

  • Preparation is crucial for most individuals. At the same time, it is important to determine how much preparation a specific person may need. For example, if your son or daughter has a tendency to become anxious when anticipating an event that is to occur in the future, you may want to adjust how many days in advance you prepare him or her.
  • Preparation can occur in various ways by using a calendar and marking the date of holiday events, or by creating a Social Story that highlights what will happen at a given event.
  • Prepare a photo album in advance of the relatives and other guests who will be visiting during the holidays. Allow the child access to these photos at all times and also go through the photo album with your child while talking briefly about each family member.
  • If your child has difficulty with change, you may want to gradually decorate the house. For example, on the first day put up the Christmas tree, then on the next day decorate the tree and so on.
  • Engage them as much as possible in the decorating process. For some it may also be helpful to take them shopping with you for holiday decorations so that they are part of the process.
  • It may be helpful to develop a visual schedule or calendar that shows what will be done on each day.
  • It may also be helpful to inform them of the process for removing decorations, since this process may be disruptive for some individuals as well.
  • If having decorations around the house does become disruptive for some, it may be helpful to revisit pictures from previous holidays that show decorations in the house.
  • If such a book does not exist, use this holiday season to create a picture book
  • Consider involving your son or daughter in the process of decorating the house.
  • Once holiday decorations have been put up, you may need to create rules about those that can be touched and those that cannot be touched. Be direct, specific and consistent.
  • Understand that with some individuals, decorations may not be feasible.
  • If you are traveling for the holidays, arrange to have the child’s favorite foods, books or toys available. Having familiar items readily available can help to calm stressful situations.
  • Use social stories or other communication systems to prepare them for any unexpected delays in travel.
  • If your son/daughter is flying for the first time, it may be helpful to bring your child to the airport in advance to help them become accustomed to airports and planes
  • Use social stories and pictures to rehearse what will happen when boarding and flying.

You can see examples of numerous visual supports on our website, and stay tuned for my next holiday post about ways to respond to a child with autism who begins obsessing about a particular gift or toy they want.

On a related note, Easter Seals also offers unique gift ideas for caregivers, including parents who care for children with and without disabilities. Many of the ideas are free and all are from the heart.

 

How do people who are blind watch TV?

comcast_292The only time we have our television on is when my husband is home. I can get a lot out of listening to shows on my own, but without being able to see, it’s too hard for me to search for programs. Mike can see, so he’s left to channel-surf for both of us.

 

And so, I was very happy to read Comcast’s announcement of a new feature to change the way blind or visually impaired people like me can experience television: a new “talking guide” will read the on-screen menu and navigation functions of their X1 platform out loud.
The Comcast website says the “talking guide” will be available to all X1 users and will feature a female voice that reads selections like program titles, network names and time slots. It’ll announce DVR and On Demand settings, too.

 

Over the past two years the Comcast Foundation has helped Easter Seals make a big difference in
the lives of people living with disabilities. Comcast’s new feature will give users like me a new level of independence and flexibility when we “watch” television – I can’t wait to get my hands on this new feature.

Learn more about Comcast’s support of Easter Seals.

 

Like my wheelchair? Me, too!

I am pleased to introduce Nathan Watt — an entertainer in the Great American Country Show at Dollywood — as a guest blogger today.

Unstoppable

by Nathan Watt

Nathan WattMy name is Nathan Watt. I am a 23-year-old singer/songwriter and I was born with spina bifida. I have had 47 operations and spent a huge portion of my childhood just trying to stay alive, but with the help of God and my family I am thankful to be where I am today.

I ambulate using a wheelchair, and I can use leg braces to walk short distances when needed. This is the way I live my life, full of joy and to its full capacity. It’s always funny to me that people automatically assume that life in a wheelchair is painful and that I am bound or confined to the chair. I ask them to think about it this way: my wheelchair does not confine me, it frees me. Without my wheelchair I’d be stuck at home and living a fairly sedentary life. With my wheelchair, I am free to go anywhere anybody else can go.

Nathan backstage of Avenue Q

Nathan backstage of Avenue Q

My mom brought me up to be unstoppable. She taught me that where there is a will, there is a way, and that if I want something, I’ll have to work for it. I may not achieve my goals the same way everyone else does, but I achieve my goals. This attitude has helped me follow my dream of becoming a performer:

  • I received a full ride scholarship to Capital University where I earned a Bachelor of Music in Music Technology and Voice
  • While at Capital University, I played the lead role of Princeton in the musical Avenue Q
  • Later that year I auditioned at Dollywood
  • I graduated from Capital on May 3, 2014, and four days later I moved to Tennessee to start my new life as a singer in The Great American Country Show at Dollywood

Currently I am performing at Dollywood as the sole musician in the Christmas show “O Holy Night.” I know that when I get up on stage and sing, pop a wheelie, and entertain an audience that I am shattering the image most people have of a “disabled” person.

Nathan Watt and family

Nathan Watt and his family

Probably the best part of my job is when I am able to entertain veterans in our audiences. I have always had a deep respect for our men in women in uniform — many of my family members have served in the armed forces. My mother served six years and then left the Air Force to take care of me. My 90-year-old grandfather fought in the Battle of the Bulge and still has shrapnel in his leg. Another grandfather served on the 38th Parallel. Several cousins and uncles have served in the military, and my Uncle Mike still serves in the army as a recruiter.

It really didn’t dawn on me until high school that I would never be allowed to serve in the military. Instead, I take any opportunity I can to volunteer and sing for our troops.

For my grandfather’s 90th birthday, my mom and I wrote a song to commemorate what he has done for our country and family. You can listen to “I’ll Honor You” on YouTube now, and while you listen, just imagine how great it was to see my grandfather’s smiling face after we gave him this gift: he loved it!

I will never be able to repay what our armed forces do and have done for us, but I always enjoy singing our national anthem or performing for our veterans and military personnel. Performing for them is an honor because of the way they serve our country.

 

No regrets about caregiving

AmberandGrandmotherI used to think I understood what this caregiving thing was all about. But then I started working at Easter Seals.

Since starting here last summer, I’ve learned that caregivers are not just medical professionals at your local hospitals and nursing homes. They come in many forms, and in fact, there is no cookie-cutter mold for today’s caregiver. After taking a closer look at my own story, I realized that I’d been a caregiver myself several years ago.

My maternal grandmother, Irene, was an amazing woman. She raised 10 children, owned her own beauty salon, and eventually opened a home day care. Towards the end of her life she suffered a stroke, and then a heart attack, and was also diagnosed with breast cancer. She survived all of that, but things began to change — and change quickly — in 2006, when she was diagnosed with Alzheimer’s disease. My grandmother went from being this invincible woman to someone who needed her family’s support more than ever.

I was right in the middle of my sophomore year in college when I learned of my grandmother’s condition, and I made the decision to be there to assist my mother with my grandmother’s needs in any way possible. Family has always been my number one priority, and I made trips to Chicago on weekends and during holiday breaks to help my mother in any way I could — going to doctor appointments, helping with transportation, doing laundry, and so on.

And yes, like many people who have loved ones with Alzheimer’s, I didn’t mind answering the same questions over and over again. I didn’t take it personally when my grandmother no longer remembered my name. She was happy to see me because she knew I was someone who cared for her, and that’s all that mattered to me.

My grandmother died in 2010. It was a day I knew would come eventually — after all, it’s all a part of the process, right? That’s why I did all I could to be there to care for her whenever possible, because she had always done so much for me and my family.

Now, I have my memories, but most importantly, I have no regrets.

 

Letter to my high school self: What the doctor should’ve said

thrive-logoAs promised in my previous post last Wednesday, I submitted a letter this week to the Letters to Thrive blog. The site is easy to access, and it even has a What Should I Write About? link for those with writer’s block. Writing my letter was a bittersweet experience – I felt sad for my younger self while simultaneously feeling hopeful for the future. Here’s an excerpt:

13 November 2014

Dear Younger Self,
The blip on your popularity chart peaked off the screen last week when you returned to high school — the other kids think it’s cool to know someone who was in the hospital and was almost in a coma.
Right now The two shots you take each day are long-acting insulins, far too slow and weak to handle the carbohydrates in the popcorn you like to snack on, the ten-cent rice dish you buy to save money in the high school cafeteria at lunch and the ice cream you cheat with from time to time.
female-icon-blueThis was your third hospital visit during your high school years, and before you were released this time, your doctor declared you won’t live to see your 30th birthday. What you and your doctor don’t know right now is that later on in your life, people with Type 1 diabetes will be able to test their blood glucose levels at home throughout the day. They’ll use an insulin pump or take a shot of fast-acting insulin to counteract the sugar and carbohydrates in all sorts of foods. You’ll be able to be more spontaneous, you won’t have to plan every meal, and you won’t have to feel guilty when you snack.
What your doctor could have told you as you left the hospital this time was to keep taking care of yourself the best you can — that way you’ll live to enjoy these breakthroughs.

I hope this excerpt intrigues you enough to read the entire letter at Letters to Thrive. Once you’re there, please consider writing and submitting a letter of your own – our letters help Thrive create a community from shared life experiences.