Doing Christmas

Erin Peden

As November tumbles into December, the scenes around us begin to change from the drab and dreary to the bright and flashy. Blow-up snowmen, big bows and twinkling lights start to pop up in everyone’s neighbourhoods. Some strangers become exasperatingly cheerful while others start to push and shove, and the crisp winter air starts to smell like a confusing mix of cinnamon, pine cones and car exhaust.

Ahhhhhh, Christmas.

I grew up in a home where the season of Christmas was a month long affair and each and every year the motto of “more is more” was silently implemented. It was an opportunity to be over the top with love, happiness and food. More was more! More cookies = more happiness. More Christmas music = more cheer. More cheer = even more cheer (and a well-earned headache). ’Tis the season to go all-in and not have to worry about the fallout until the lights go out on January 1. As a family, we were really good at “doing Christmas”, so it went without saying I was fully committed to raising my own children to experience the season of giving, loving and eating the way I learned to in my early years.
My son was just one year old when Christmas began to morph from the most wonderful time of the year to the most devastatingly disastrous time of the year. In my parents’ busy home, the music was loud, the food was plenty and the eggnog was fresh. My brothers and their families had arrived and the hustle and bustle of happiness should have been in full force.
Except no one could stand my kid.

None of us were permitted to enjoy a lazy lounge on the couch while humming the Carole of the Bells because he was everywhere. His hands were on the hot stove, his toys were in the toilet, our cell phones were being tossed into wine glasses and we were dizzy from watching him literally spin circles in the centre of the room. By the time we turned the lights out on Boxing Day, all of us were very ready for Christmas to be done.
One year later, we made the trek to my mother-in-law’s home for Christmas. Every year she transforms her home from a house to a winter wonderland. I had always sincerely appreciated the time and detail she put into making her home a ‘set’ for the season.
Until I walked in with my two year old son.
This time, my (now well-developed) Spidey Senses detected each and every potential threat within her home. Uncovered plugins, glass balls on the Christmas tree, plates of candies within his reach, cat food dishes on the floor, and – the icing on the cake – a ceramic electric train on the coffee table. Rather than appreciating her efforts, I was angry. Yes, that’s right: I was angry at her for doing Christmas the way she had always done it. Our son tore around the house like the Tasmanian devil on speed, cutting a swath into my mother-in-law’s perfectly garnished home. He banged his head, screamed, cried and broke treasures. I ended up locking the two of us in a small little bedroom in the corner of the house, trying to hold him as he wailed for hours at a time.
But the time the lights went out on Christmas Eve, I had burned bridges, pointed fingers, caused tears and threatened to cancel Christmas indefinitely.
It was a short four weeks after that holiday disaster when a paediatrician told us our son likely had autism.
Luckily, time has healed the wounds of Christmas past, and after several year of sharing experience and strategies, our two families have come to understand the season we had always celebrated in an outsize way would have to be taken down several notches.
Don’t get me wrong – it wasn’t effortless. Change is an easy thing to resist, especially when it messes with traditions as deeply ingrained as these – but over the years we have been able to rediscover happiness during this season.
Here’s what we’ve found works:
1. We don’t travel anymore. This remains a difficult decision because we miss the happy times in warm, loving homes of family and friends in other towns. But the fact remains the traditions of the past are not a possibility anymore and the calm, cheerful visits we once knew are likely to be replaced with anxious behaviour and epic meltdowns. Instead, we travel following the holiday, when the anticipation and sensory overload that come with Christmas morning have passed. We have better, healthier visits and are essentially creating new traditions. A trip to see Grandma after Christmas makes the holiday celebration stretch a little longer, and it’s more about cuddles on the couch than presents under the tree.
2. We host. At least one evening during the three/four day stretch is spent in our home. This way, my husband and I can partake in the festivities without having to worry about our son’s whereabouts, what he’s touching, or even what he’s eating. We can control the level of noise and, at the same time, expose him to having a full, bustling home. Through this process we’ve learned our son needs his space – as in an actual space that is his own – so that when he becomes overwhelmed with visitors, noise or colours, he can slip into his room for what we refer to as “chill time”. After a few minutes (or sometimes a few hours) of being alone, he seems to be able to return to the festivities recharged and sensory-ready. Friends and family understand his “space” is off limits (unless he invites you into it). When he feels calm, we feel calm – so hosting is a win/win in our home.
3. We’ve requested fewer gifts. Unwrapping presents is actually a sensory nightmare for our son. The sounds, the textures, the messy piles of paper, the dust in the air… it’s just too much. We make suggestions to family for gifts we know he’ll deeply enjoy, and we let him take as long as he likes to open and appreciate each one of them.
4. We let ourselves grieve the loss of tradition. That sounds kind of lame, but sometimes “what you know” is hard to let go of – especially when you reallllllyyyyyy like it. By recognizing we felt pain because of something as simple as changing how we celebrate Christmas, we’ve all been able to move forward. Our extended family appreciates that “different-than-before” is okay and, actually, making changes and introducing our kids to new adventures has been fun.
Last year when the lights went out on January 1, my husband and I gave each other a high five and a pat on the back for finding a way to make it work. I gotta tell ya, regardless of the changes we had to make, I still think we’re pretty good at “doing Christmas”. We just needed to revise our motto.
Turns out, less is more.
So. Much. More.

Enjoy the season!

 


Connecting the Loop

Myles Bingham

How One Classroom Uses Zones of Regulation and Student/Teacher Debriefs to Help Teenage Students with ASD, FASD, and Brain Injuries Express Feelings and Needs

 

Behaviour modification is a priority in my class with teenage students who have diagnoses that include brain injuries, Fetal Alcohol Spectrum Disorders (FASD) and Autism Spectrum Disorders (ASD). Our goal is to practice appropriate social interactions and behaviours in the classroom, which may translate into successful interpersonal exchanges at school and in the community.

Our initiative last year was to implement Positive Behavior Support Plans (PBS). These plans empower students to use self-regulation strategies which are modeled and practiced in the school. This year involves using two strategies to enhance students’ abilities for self-expression and reflection. Incorporating the Zones of Regulation (www.zonesofregulation.com) check-ins throughout the day and teacher/student debriefs post-event have helped to significantly reduce the number of negative observable behaviour events in our classroom.

The Zones of Regulation is a daily curricular resource that uses pictures, colours and words for students to reference to express how they are feeling. Students point to pictures, or say the colour or keywords that express their current presentation. The Zones of Regulation chart is displayed at the entrance of the classroom. Students complete several check-ins with staff upon arrival and throughout the school day using the Zones of Regulation picture sheet. The multimodal format makes this resource easy to use with our diverse student population.


Two weeks after implementing this daily check-in, students began to independently use the keywords and colours to describe feelings. Staff modeling shows students that this strategy applies to adults in a work setting. With Zones of Regulations established as a routine, the next step is to use this strategy and to promote self-reflection.
In order to modify unwanted behaviour the first step is to understand the function of that behaviour. To do this successfully I need to analyze what the student is trying to gain or avoid. This ultimately helps me tailor the classroom structure to meet the students’ needs. Students can also benefit from reflecting on their own behaviour when they are shown how to employ this strategy.
Student/teacher debriefs may occur naturally in the course of a school day. In our classroom we focus on making these debriefs happen on purpose. When students have a behaviour event, there needs to be a period of calm to de-escalate. Once the student has demonstrated that he is calm, we meet and review the events that occurred in order to uncover the function of the unwanted behaviour. The Zones of Regulation is the tool that we use to ensure the student is ready to engage in the debrief process. Here is an example of a recent student/teacher debrief that helped both staff and the student understand the true function of the student’s defiant and rude behaviour:
A student diagnosed with a brain injury participates in weekly delivery of a newspaper as a part of the work experience program. On this particular day she was attempting to dictate the newspaper delivery plan. She was very insistent that the route be broken up into two chunks. As a class we discussed her idea and determined that we should all go together and complete the one hour circuit in one chunk due to the threat of bad weather in the forecast. The student yelled, “It’s not fair! Nobody listens!” and ran to her desk, grabbing textbooks off of a neighboring desk and throwing them against the wall. She then sat at her desk. crying with her head in her hands. Staff provided her with space. Looking at our classroom student notes, she had presented in the “blue” zone and expressed she was “tired” upon arrival.
After 30 minutes, I approached the student as she appeared calm. The rest of the class was outside delivering papers so there was a time to talk. I asked her to look at the Zones of Regulation chart with me and tell me how she was feeling. She stated she was feeling “green” and “calm”. I said, “Help me understand why you were so upset earlier.” After some discussion, she came to realize that her feet hurt, as her shoes were too small. Participating in a walk for longer than 20 minutes would result in foot pain. She wanted to participate in the class event, but did not want be in discomfort for the remainder of the school day.
Once this student had time to relax and felt comfortable having a conversation, she was able to work through why she became so upset when her delivery plan was not followed. The Zones of Regulation helped me understand when she was calm enough to engage in the debrief process. Once she was composed, we were able to loop back to the behavioural event to understand the function of the outburst: avoiding foot pain. The student could not initially express when she was in the “Blue Zone” and feeling “tired” earlier in the morning. The next step was to ask the student what she would do next time this happened. If she did not have new shoes by the next scheduled delivery, she said she would ask to participate by packing the delivery bags and not worrying about the walking portion, which would reduce her anxiety over foot pain. We were able to work together to predict a possible future scenario and make a plan to avoid a behavioural event.

The Zones of Regulation enhance self-expression. This is a strategy that students can use throughout their lives in order to tell people how they are feeling. Using the Zones of Regulation in the classroom has allowed staff to build in an important self-reflection strategy. Students may learn more about their own behaviour when they engage in a teacher/student debrief. Connecting the loop between Zones of Regulation and student/teacher debriefs helps staff both understand and ultimately assist students in expressing their feelings and needs.

Myles has a Master’s degree in Education Psychology with a focus on special education from the University of Alberta. He is currently teaching an Interactions class for Institutional Services Schools, which is a part of Edmonton Public Schools. In his spare time he coaches hockey and is building a backyard rink for his three boys, all under the age of 5.

BabySibs Study Looking for Infant Siblings of Children with Autism

The BabySibs Project is a study being run by Dr. Suzanne Curtin’s Speech Development Lab at the University of Calgary. The study looks at infants who are at high and low risk for developing Autism Spectrum Disorder (ASD) to learn whether or not they differ in their development of speech, language, and communication. The Project is investigating language and communicative development in two different populations: one in which an older sibling has a confirmed diagnosis of ASD, and one in which the older sibling has not been diagnosed.

The Project is looking to increase the number of participants in its study. If you are a parent with at least one child who has been diagnosed on the Autism spectrum and have a second child less than 6 months of age, or are expecting, we need your help! If you are interested in participating in child speech development research, please reach out to Kim at sdl.babysibs@gmail.com or (403) 210-8678. More information about the project can also be found on the Speech Development Lab’s website. Or click here to see the brochure. The brochure also includes information on an additional Sight, Sound and the Brain study.

Joe Williams: Award-Winning Animator

Shirley Williams

Our son Joe, who has high functioning autism, is now 24, and has been living on his own with minimal supports for the past two years. He has done very well and continues to progress independently. From a young age Joe has used drawing as a coping mechanism in many situations: in a crowd, boredom, unsure of social situations etc.

It has progressed over the years because of his experience as well as taking high school art. His favorite type of art is sketching in ink, though he had experienced many art forms while taking high school art from the ADLC (Ab. Distance Learning Centre). His dream is to eventually become a movie animator, so we have been seeking ways to help him achieve his dream.

While at an Edmonton autism meeting we connected with another parent who directed us to the local Pixel Blue College. We discovered that along with their regular college programing of graphic design and audio production, they offered six week camps on a variety of courses including 2D & 3D Illustration and animation. We were so excited to discover this, and we signed Joe up right away.
He went for the 3D animation camp and learned some basics of the Mayan and Zbrush softwares. The instructor was very patient, skilled and worked well with Joe. My husband and Itag-teamed being Joe’s aid, which was also good, so we could learn the software as well as help the teacher and Joe connect. At the beginning he made some basic objects in both programs: balls, a cup, etc. After a couple of weeks learning basics of the two programs, it became obvious that Joe’s abilities were suited best for Zbrush.

For the last four Saturdays Joe worked on an object to make for his class project. He choose one of his favorite drawings: Baby T-Rex! He was coached by his teacher and assisted when needed with fine tuning of some of the details, like the toes and claws. It started out as a dino sketch and turned into a full fledged dino with scales, texture, shadows, perspective, etc. All that was needed to make it into a 3D piece of art work. It was so interesting to watch it being created, because you could flip it around to any angle to view it, while working on it. It turned out really awesome and Joe was very proud of his hard work and accomplishment (and so were we)! He created this Baby T-Rex in May of 2013.

We framed it and sent pictures of it around to family and friends, and didn’t give it another thought until last year. Our local artists’ group, The Barrhead Art Club, was hosting a week of local young adult artists. and Joe was contacted by an an artist friend, Glenice Wilson, who encouraged him to bring in a variety of art pieces. It was an encouraging time for young artists in our community, and everyone was thrilled to see what our talented youth had to offer.
Glenice noticed Joe’s baby T-Rex and suggested that he become a member of the ACACA (Alberta Art Clubs Association) and enter it in the upcoming spring Northern Region Art Show. Joe happily did this, and to all of our surprise he won the First Prize award for the Best Digital Artwork in the 2015 Northern Region Zone Show! Of course it was the only 3D entry, but it was still an honor to be recognized. He won a certificate and a cheque. After that, his little dino was entered in the Southern Region Zone show. This time Joe’s piece had competition, but it still managed to win the Digital Award for the Alberta-Wide Show! Way to go, Joe! We went down to Red Deer to receive his award certificate and cheque. What a great honor and encouragement for Joe and us!

It was then taken to the Alberta Spirit Show in Edmonton, where it hangs with the other award winners until Nov. 28th. The address is:

VAA (Visual Arts Ab.) CAREAL
3rd Fl., 10215-112st
Open Wed.-Fri. 10 am-4 pm and Sat. 12 pm-4 pm

You are welcome to go and view it, now that you know the story of Joe’s baby T-Rex!

Joe wants to continue his 3D animation, so we are seeking an aide to train for this. He still keeps busy with maintaining his household, learning online history and writing children’s chapter books. He is doing well, and we have high hopes that his career dreams of becoming a 3D movie animator will become a reality! If his little 3D Baby T-Rex is any indication of his future success, we can be hopeful indeed!
We share Joe’s story to encourage others who are seeking to help fulfill their adult autistic children’s career dreams. Folks with high functioning autism can achieve so much more than society expects. Parents: keep connecting, keep dreaming, keep praying and keep moving ahead with your child and someday your child’s dreams may be realized. They may or not achieve the ultimate goals sought, but they may achieve little goals that lead to big ones and or they may venture into new areas. Ultimately, it is the process or the journey that is important, and trusting that all will work out for your child in the end.

Their careers may not turn out the way that we think, but they will turn out unique and fulfilling to each individual over time, if they keep working at it and have a healthy environment in which to succeed. Parents, don’t give up on your child, but always take care of yourselves along the way, as well. Take breaks, keep positive, and keep coaching your child along their own unique career or life journey; it will be so worthwhile for your child and for you. We are very blessed to have Joe do so well in his art and his other endeavours, and we trust that his baby T-Rex dino is only the beginning of a successful 3D movie career for him. (This little dino really gets around!) We wish you similar success and hope with whatever your child’s special career or life journey is.

Ready Willing and Able: Year One Update

In today’s hyper-competitive business environment, the difference between success and failure lies in
 the talent and diverse skill set of your workforce. There are approximately 500,000 working-age adults with intellectual disabilities or ASD. This untapped workforce can help address current labour shortages while making businesses stronger, more diverse and more productive.

Ready, Willing and Able (RWA) is a national partnership of the Canadian Association for Community Living (CACL), the Canadian Autism Spectrum Disorders Alliance (CASDA)
 and their member organizations. Funded by the Government of Canada and active in 20 communities across the country, RWA is designed to increase the labour force participation of people with intellectual disabilities and Autism Spectrum Disorder (ASD).

As of October 1, 2015, the Ready, Willing and Able (RWA) program moved into year 2 of its three-year mandate. At the moment, the consensus is that the program is rolling out well in our 20 primary RWA communities across the country. Our employer engagement efforts have been highly successful and are being met with much interest and support from many employers. We are witnessing a significant “return on investment” on these engagement efforts, as many employers are subsequently making a commitment to hire individuals with an intellectual disability or ASD.

As of the end of Ready Willing and Able’s most recent reporting quarter (ending September 30, 2015), the program, in concert with our employment agency partners, has resulted in over 400 new employment opportunities nationally. This means that over 400 Canadians with an intellectual disability or ASD have entered the competitive labour force, and are earning a real wage, many for the first time! Also of significant note are the national partnerships the program has built with Costco, Home Depot, Value Village, Sodexo, and Holloway Holdings. Additionally, RWA “Building Block” projects are being undertaken in seven provinces and territories, intended to further enhance our community partnerships, by together addressing gaps in existing employment policy and/or practice.

Since October 2015, RWA has built over 120 ongoing partnerships nationally with supported employment agencies and like-minded community groups engaged in employment development. These partnerships represent the community expertise and experience so crucial to the success of RWA throughout the country. In a broad sense, this partnership has not only led to the considerable individual employment successes we have together achieved, but also serves to enhance and advance the overall community capacity to respond to the challenges of building a truly inclusive labour force within Canada.

In October, Ready Willing and Able launched a national awareness campaign through LinkedIn, and we are bringing a more concentrated Twitter campaign online shortly – you can find us @RWAWorks. We also invite you to visit the new RWA website, which launched a couple of months ago after extensive re-branding: www.readywillingable.ca.

If you have any questions or simply wish to learn more about RWA, please feel free to contact us at info@readywillingable.ca

We Want to Hear From You!

We are looking to publish stories, event notices or news items from all parts of the province. If you’d like to have your items included in the December 2015 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of Wednesday, December 9.

Doing Hard Things

Candice Bowie

At least once a day, for as long as I can remember, I always say the same thing to my son David: “We can do hard things!” Whatever the “hard thing” of the day is – like the frustration of putting on his boots – he gets through it, and I’m there cheering him on.

About a year ago I caught myself saying “I can’t, it’s too hard!” This was my reply when a friend asked if I was going to do a half-marathon. I went on to say the trainings are too much, David’s therapy takes a lot of time, and so on. How could I get the long runs in? I made excuses, and I felt totally OK with it! But later that night, David was stuck – he could not leave his ABC book alone! So I said, like I always do, “We can put the book away because we can do hard things.” I then put the book away, held him as he cried, and then about 5 minutes later the realization hit me: everyday I tell him to do hard things, but earlier today when I had been asked to do something hard and out of my comfort zone, I had backed away and said I couldn’t. I felt total mom guilt! I knew that life for David is harder than life for me, and I still push him every day to do those hard things.

So I decided that I would do hard things: I would push myself WAY out of my comfort zone, and I wouldn’t say I can’t.

I’ve spent the last year trying new things: I’ve done all kinds of workout classes, talked in front of groups of people, and tried to share bits of our life with strangers even when it was hard! I have said lots of things while trying these new things, but I never said I can’t, and I have never stopped, because I know that I can do hard things.

It’s changed the way I talk to David about doing hard things, and it’s changed the way I think of myself.

So right now I’m sitting in an airport about to fly to Las Vegas, where I will run that half marathon. To me it’s a very HARD THING, but I will do it. And in the moments that I want to say I can’t, I will remind myself that if David can do hard things, then I can do them too.

Families Forward

Families Forward is a mentorship support group designed for families supporting both adults and children with disabilities. This group meets on the third Thursday of every month, 7 to 9 p.m., at Gateway’s office, 104, 18304 105th Ave.

For details, call 780.454.0701. Visit the calendar on gatewayassociation.ca for the latest schedule, including monthly topics. *Registration is not required. Please feel free to drop in!

NEW! For those who are interested in hearing the presentation but are unable to attend in person, we offer live streaming through Google Hangouts on Air! Please contact Lori at 780.454.0701 ext. 125 by 3:00 p.m. on the Tuesday before, if you are interested in signing up. Thank you.

Families Forward on Facebook

We are always looking for new opportunities for families to connect and support one another. Now there is Families Forward… On Facebook, a new group nurtured by two wonderful admins who are also moms of children who live with a disability. The group is for parents/primary caregivers of loved ones who live with a disability. It was created as an outlet for those with common lived experience, run by those who share that experience.

The group’s admins, Leanne Utendale and Brenda Davidson, are both from the Edmonton area and are excited to nurture this group to its full potential! As this is a “secret” group to protect privacy and preserve trust, you must be added by an admin or an existing member. To be added, email Leanne at leanne.siems@hotmail.com or Brenda at dbrenda@telus.net.

Please note: This is not a group for staff or for those working in the disability field, but rather a safe sharing space for those with common lived experience.

Website Forum

We just launched a new Forum at gatewayassociation.ca/forum on all kinds of subjects. Stop by and take a look. Add to the conversation! Topics include: advocating, assistive technology, financial advice, foreign workers, guardianship/trusteeship, staff, using a broker, and more. Forum visitors are more than welcome to create their own discussions and post any time they like.