Wondering how to get through the holidays? You’re not alone. Many families with a loved one on the spectrum feel overwhelmed this time of year and contact Milestones for some extra support. Below, Program Director Beth Thompson answers some of the most common questions we hear during the holiday season.
What can I do to make traveling easier for my loved one?
Milestones has compiled tips for you to ensure that your travel for a vacation or family gathering starts and ends on a positive note. Read the Milestones Travel Tips Toolkit for ways to make your flights successful! When possible, have your loved one visit the airport and go through a “mock run”. Also, check to see if there are school groups or organizations like Wings for Autism in your area who can help your family with this.
How do I make my home welcoming for loved ones with autism?
Reference our “How to Make a Place Welcoming” quick tips! Don’t be afraid to the teen or adult or their parent how to make gatherings better for them. They will be grateful you asked instead of assumed.
How do I encourage my child to come out of their room to spend time with family?
Make a contract with them and negotiate when and how long you would like them to participate with the family. Assure them you are not trying to take away all their downtime or screen time. The pleasantries and increased social expectations of the holidays may be lost to our loved one or may not matter to them at all. That’s okay – use what does matter to them (another ten minutes on their video game) to motivate them to join you at the dinner table.
There is so much to do this month – how will my family juggle it all?
Take time to prioritize what’s really important to you and your family during the holiday season. If getting a picture with Santa is important enough to struggle through a possible meltdown, make that the goal and support your child with visual supports, reinforcements, and social stories to help them reach that goal. If having your child sit down as part of the family meal or service is the top priority, make a plan to help your child understand the schedule and provide their favorite reinforcers through the activity.
How do I ensure my child’s caregiver enjoys their holiday season?
Make sure you are planning a break for everyone, including YOU! Your child’s teacher and therapist get a winter break – do you or your child’s other supports, like your partner or their siblings, get a break too? Even if it’s 20 minutes of secluded ice cream time after dinner, make sure you are taking breaks for yourself. If you need more in-home support to get your break, reach out to Milestones to get referrals for respite providers or aides. Remember, you do not have to go it alone.
I am worried my child will get restless during downtime. How do I help my child enjoy their winter break? Make a plan to keep your loved one engaged while on break. Schedule a few specific activities that they will enjoy – a trip to see sensory-friendly Santa, a ride on the Cuyahoga Valley train, a trip to the zoo – these activities will help your child remain excited and motivated to work towards their desired activities (find autism friendly events here).
How should I deal with friends or relatives who don’t know my loved one is on the spectrum?
People may have questions about how to best interact with them. Relieve their concerns and give them this Milestones cheat-sheet on how to be a friend or relative to someone on the spectrum.
As always, you can email, message our team through Facebook, or call Milestones’ free Helpdesk at (216) 464-7600 if you need further guidance.
On the forefront of transition and adult services, Beth Thompson is Milestones’ Program Director. Beth has a Master’s degree coupled with extensive hands-on experience working with high school students with autism. Whether students are college or career bound, Beth is instrumental in helping teens successfully transition to adulthood.
If your family is anything like ours, the holidays can be a stressful time of year. After the novelty of winter break wears off, my boys quickly become bored and irritable. Unfortunately, this happy time of year can be stressful for many children and adults diagnosed with autism. Whether it is caused by a change in routine or deficits in leisure skills, extended breaks from school can be anything but joyful.
Last year, our family decided to break the cycle of the winter break blues. I had a simple plan in mind: we do just ONE family activity per day. I picked a variety of fun things to do and created a picture checklist to guide each activity. Using this method, our son participated in so many activities that he would have previously tried to escape. What really blew me away was after painting a picture (an activity that typically evoked his most cunning escape tactics), he smiled and said “painting.” Then an hour later, he looked at the picture and said, “paint a picture.” He was so proud of his work! I then realized that this was a strategy we needed to use as often as possible.
For other parents who are looking for new tools to assist them this holiday season, I highly recommend activity schedules. Activity schedules are sets of pictures that show each of the steps needed to complete a task. They help ease the stress that novel activities sometime bring by showing a concrete beginning and end for each task. They are a great way to promote independence while also decreasing the stress parents can feel during family activities. Click here to see an example of a simple activity schedule for a fun, snowman craft.
While there is a plethora of pre-made activity schedules online, I found that looking for what I needed simply took too much time. If there is one thing that most parents of children with autism share, it is limited free time. Since there are many low-cost apps available in the iTunes store, I found that the cost was well worth the time saved. Some activity schedule applications even include daily, weekly, or monthly
visual schedule options.
My favorite apps for making activity schedules include: First Then Visual Schedule HD, Choiceworks, and iPrompts. Visual Schedule is another app that I cannot live without. It allows the user to place either pictures or short video clips right in the activity schedule, which makes it a fantastic option for visual learners. For non-tablet users, Boardmaker Online is a fantastic option. Users can use picture symbols or online photos to create schedules. Users may also obtain a free trial for 30 days without any strings attached, great for a family trying to navigate the holidays on a budget.
Using simple tools and a little prep work can help you navigate the holiday season with a little less stress. The time spent planning upfront will allow you and your loved one with autism to experience the joy and love that truly represents the holiday season. You may just have a little fun along the way too!
Sarah Glass, BA, BCaBA, is the owner and operator of Oh, Hi Social Skills and Innovative Behavioral Consulting. She returned to college and became a behavior analyst after her oldest son was diagnosed with autism at the age of three and a half. She is a mentor and Skill Corps Leader for the Global Autism Project.
Some of my greatest memories are holiday-related. For example, the Christmas of 1982 when Santa placed under our tree a stuffed prairie dog—Prairie Pup. My new special interest quickly became prairie dogs for the next eight years. Prairie Pup and I were inseparable, until I began middle school and Prairie Pup became the first prairie dog to be expelled from the Oakland County Schools. The special education teachers informed my parents, “Your son is too old to be carrying a love-worn prairie dog, desperately needing Rogaine.”
During the holidays, I have experienced meltdowns and stress. When I was seven years old, my Christmas gift was an army outfit, equipped with a toy machine gun, walkie-talkies, and binoculars. After a few days, the trigger on the machine gun broke. My parents did not send it back to the North Pole for repairs but instead returned it to Sears for a new set. The new army set was complete except for one small detail —the binoculars were a different style, a 1940’s design compared to modern. When I saw the new binoculars in the box—the former ones missing—my emotions erupted. I began hitting my head relentlessly, smashing everything in my path. My meltdown lasted ten straight hours; it only ceased after my parents went back to Sears and found my original binoculars.
Luckily for my family and friends I have learned five survival techniques for the holidays I think all individuals on the spectrum should consider trying.
1.) Reduce stress by dressing comfortably for holiday events. During the holidays, I enjoy wearing my Frosty the Snowman pajamas and Star Wars T-shirts. These clothes help my sensory issues stay balanced and cause me to feel calm.
2.) Be prepared for the environment of holiday events. My dad has severe asthma. If the family hosting an event has a dog or cat, my dad will politely ask them to keep the pet in another room to prevent him from having an asthma attack. I have sensory issues to smoke, so like my father, I have to plan ahead to avoid what could affect me. So I won’t attend any holiday events where people will be smoking.
3.) Know who to avoid at holiday events. Certain family members can be annoying and rude especially for us on the spectrum. The aunt who has a funky body odor and loves to give you a big hug. Your uncle who asks more questions than an inquisition. These family members can add stress to your holiday so minimize your time with them if you need to.
4.) Bring a fun bag that helps relieve anxiety. My fun backpack contains books and toys. When I become bored or overwhelmed by the noise of the nieces and nephews playing, I sneak off and read a book.
5.) Always have an escape route. At my parents’ house, I have a man cave with over 4,000 books and a Calico Critter collection. When I feel stressed out, I hide in my cave. The escape route for you could be going for a walk outside or a room away from the guests.
Ron Sandison is the founder of Spectrum Inclusion and is employed in the mental health field. He is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom, published by Charisma House. Sandison speaks at over 70 events a year including 20 conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with a daughter, Makayla.
In 2010, overwhelming devastation strained governments and humanitarian agencies following the earthquake in Haiti. Our teens and young adults saw the troubling images of toppled buildings, ravaged neighborhoods and despondent Haitians. They asked me, “What are we going to do to help?”
My first thought was Haiti is more than a thousand miles away across an ocean… and we know nothing about earthquake recovery or disaster relief. My second thought was YES! Our program is achieving its mission of encouraging our young people to accept responsibility to help the community both near and far. So, we went to work! We signed up to volunteer at MedWish International, a non-profit agency that sends medical supplies to third world countries such as Haiti. We also planned and hosted our first philanthropic event. We performed our play as a fundraiser for earthquake relief and collected $400, which the group chose to donate to Save the Children Haiti.
The Horvitz YouthAbility program of JFSA Cleveland empowers youth with disabilities and at-risk individuals by engaging them in volunteerism. As a YouthAbility coordinator, my team and I encourage our young people to help themselves by helping others. Our days, evenings and weekends are filled with a wide range of philanthropic activities. We garden, maintain a trail in the Metroparks, assist Holocaust survivors, create artwork, perform original plays with positive messages, help the homeless and more. We want our ambassadors to know that they have the responsibility and privilege of representing YouthAbility, the Jewish Family Service Association and all of the other wonderful people like themselves.
Most people referred to YouthAbility were only on the receiving end of services before entering our program. YouthAbility flips the paradigm. Our ambassadors are expected to be community helpers — and nothing less is accepted. Everyone has a gift to give. Everyone has the ability to help. Everybody has the responsibility to use their strengths to do what they can to support the community. It is important that we at YouthAbility volunteer because we are part of “everybody”. Once we had a lovely teenager who dearly wanted to help at her local swimming pool. She was visually impaired, non-speaking and used a wheelchair. We gave her a few bottles of sunscreen and her aide programmed her assistive talking device to ask, “Do you need sunscreen?” In hardly any time, she was off helping the pool guests protect their skin.
Communities that hope to be inclusive reach out to exceptional people and give them help. Communities that achieve inclusivity reach out to exceptional people and give them opportunities to be helpers!
Since our first fundraiser in 2010, our group has raised close to $25,000. Our ambassadors participate in social entrepreneurship projects such as delivering lunches, selling homemade cookies and making handmade greeting cards. Most transactions net between a quarter and a dollar but it all adds up. Our ambassadors keep track of the revenue, cost and net revenue. About three times a year, we host a mini-grant meeting to decide which agencies should receive our monetary donations. In the past, we have given to local, national and international programs. For example, in 2015, we raised $4,500 to support peace-building programs for orphaned refugee teenagers in South Sudan. This past summer we donated money to start a college scholarship fund for students pursuing careers in social work, psychology, special education or a related field. Our YouthAbility ambassadors helped to create the application and they will interview the scholarship finalists.
In the past few months, YouthAbility has been busy with the slew of hurricanes that affected the Gulf this fall. We did a fundraiser for victims of Harvey, collected supplies to send to victims of Irma and Maria, and hosted puppies rescued from Hurricane Nate. Each of these acts are just a small gesture but they are small gestures in the right direction. Our ambassadors are proud to be moving in the right direction with the larger community.
Just last week, I received an email about a school building for students on the autism spectrum which burned in the Santa Rosa fires. It is touching that the sender felt our group could make a small, meaningful gesture to support those students who are struggling without their school building. We are in conversation about what we might do and we are looking forward to helping.
At YouthAbility, we strive to instill a passion for volunteering in everyone we meet. Our ambassadors must know that we all have a duty to serve when we are a part of a greater, connected community. When want our young people to seek out the options in which they can give back in their own way.
A former YouthAbility ambassador described this need for volunteering in her life perfectly. She had a position at Fieldstone Farm Therapeutic Riding Center at the time and on a particularly frigid winter morning, her mom questioned if she wanted to brave the temperatures and still go. She answered emphatically, “Of course I do! Most of the time I feel like a disabled person, but when I volunteer with YouthAbility I feel like a person.”
YouthAbility is young people volunteering. It is simple. It is necessary. It is beautiful.
He loves to make people laugh. He enjoys being an attentive friend. Take the time one of his friends was in the hospital. Knowing she loved awards shows, Cory live texted the entire Oscars ceremony for her.
“I do not tolerate when people are sad,” says the 24-year-old Ohio native and recent Walsh University graduate. “You will not be unhappy around me.”
Thanks to an amazing support system and loving family, Cory is applying what he has learned with Milestones (social development, work skills, job hunting) to school, during his internship at The Jewish Federation of Cleveland and in his relationships with friends and co-workers.
“This whole interchanging web of support has helped me through the years,” he says. “I had a lot of intervention in public school as well as coaching from Milestones. And of course, my support from family.”
Tell us about yourself. How would you describe your personality?
I try to show empathy and sympathy for others. In the context of who I am, an autistic individual, some people think I’m devoid of emotion. My defense is I put that shell on because I feel everything. People ask, “Why do you make light of situations?” I laugh and am mirthful. Otherwise I would be melting down because of how difficult things are.
What are you passionate about?
I am a reader first and foremost. I went through many of the numerous phases a young boy goes through – stuffed toys, dinosaurs, little figures. I wouldn’t really play, I would just line them up and look. I would get hopping mad if my sisters moved things. But then came the books and out came everything else. When your mother is an English teacher with 27 years in the public education trenches and your father is an amateur civil war enthusiast with books all around the house, you become a reader. The consequence of being a reader is having an extensive vocabulary.
What do you enjoy when you’re not at work?
I like going to the museums around here. I look at the museums differently because I went to a four-year university program to learn to work in museums. When I am at a museum, I see how things are laid out; I notice all the extra things that go into keeping a museum running.
What’s something you have done that you’re proud of?
I was in the Boy Scouts of America. I got the Eagle Rank. That’s the highest rank you can get in the Boy Scouts. Very few people get it.
What are some everyday challenges you face?
Waiting my turn. Raising my hand too much in class. Teachers have to see how other students are doing. I do this today in classes, I have had to watch it again. “You don’t have to raise your hand,” but no, I have to raise my hand or I will shout people down. I do not whisper.
Simple conversation cues are difficult. I have to be retaught, review, re-clarify. I have to keep those muscles exercised.
How did you get to Milestones?
By chance, my family and I were in Cleveland and learned about Milestones. My dad called their free helpdesk and spoke to Miss Haley.
My mom will say the only person who understands me more than she or my father does is probably Miss Haley at Milestones. She has been working with me so I can learn how to talk to my co-workers, advocate for myself and build a career in the field I love. I am learning to trust in my own abilities, my own assertiveness, and not always be second-guessing myself. Haley helped me achieve this.
I am currently working as the Cleveland Israel Arts Connection Intern at the Jewish Federation of Cleveland. Milestones forged this new partnership with the Federation which has provided me with the opportunity to contribute my knowledge and skills on a great team.
This is the first experience I found that aligns with my passion within museum studies. This internship is a stepping stone for me to a career in museum education. I am learning so much.
How has Milestones helped you?
Miss Haley also connected me to an Autism Personal Coach, MiKayla. I meet with MiKayla every Friday. She expects me to be looking at things to do such as using my budget and being comfortable doing things by myself, even if a friend can’t join me. I am now getting to the point of doing things on my own. I don’t give myself enough trust and confidence that I can be assertive. But MiKayla and Milestones helped me to develop this.
What do you foresee for the future? What would be your dream job?
Working in museum education. If I’m destined to be a Clevelander for the long term, I would love to work at the Rock Hall, the Cleveland Metro Parks Zoo, the Museum of Natural History or the Museum of Art.
What advice do you have for individuals on the spectrum?
I always have to remind myself daily, “You will get your happily ever after.” But you have to have the patience, trust, strength of will to play the long game to get what you want.
Some people call me a spectrum ambassador. Sometimes I don’t want to be the ambassador. I want a pill available so I can do math, so I can be more social. But I am, for the rest of my life, an autistic individual and I will always need help in certain categories.
My advice: Don’t drown yourself in despair. The label doesn’t define you. You make the label work for you.
This website was made possible by the generosity of Lois Joan Davis and grants from the William J. & Dorothy K. O'Neill Foundation and the David and Robert Stein Family Foundation, a supporting foundation of the Jewish Federation of Cleveland.