Alberta’s Autism Community Pulls Together in Support of Fire-Affected Families

Jade Nesvold

Thank you all for your outpouring of concern and support for Alberta’s wildfire evacuees.

Autism Edmonton has received calls from both those who want to help and those who need help – and we’re so appreciative of everyone’s generosity and patience. Local agencies have admirably stepped up to provide assistance to the 180+ families with autism who’ve been displaced, and people from across the province and country have been contacting us to offer a helping hand.
We want those affected to know we’re here to help them find resources in the Edmonton area, as they and their families are separated from their regular support systems. We can help connect families and individuals with the information, services and support that they need.


If You Are in Need
Contact our Autism Supports & Services Team – they can help evacuees locate assistance and resources. Email support@autismedmonton.org or call 780-453-3971 ext. 1 (open Mon-Fri 10am-4pm).
Mental health support is available 24-hours a day through Alberta’s Mental Health Help Line, by calling 1-877-303-2642.
You can see a list of some of the Edmonton-area agencies offering specific assistance for people with ASD and other special needs by visiting our website: http://www.autismedmonton.org/wildfire-evacuations-asd-info-and-assistance.
You can also find helpful information in Autism Edmonton’s “Next Steps: Online Guide to Autism Resources”. Visit our website and click on the age-group that’s relevant to you: http://www.autismedmonton.org/autism-edmonton-next-steps.

If You Want to Help

Cash donations are better than item donations whenever possible. It lets evacuees meet their needs in a dignified way, and it avoids overwhelming agencies who have limited resources to organize and distribute the items.
Cash donations are best made to the Red Cross Alberta Fires Appeal: online at www.redcross.ca or by calling 1-800-418-1111. Watch out for scams (collecting door to door, etc.) and inspect all donation page URLs to make sure they are legitimate and secure.
If you are able to host a family or individual with autism (or other special needs), please contact Inclusion Alberta by phone at 1-800-252-7556 ext. 400 or by email at mail@inclusionalberta.org.

Thank you, Alberta! Stay strong and we’ll get through this together.

Our Grade One Experience

Erika Rowden
Last summer I was so worried about Conor’s transition to Grade 1: the full days, more academic demands, eating lunch at school, recess. Of all these, recess was the one that scared me the most: would be on his own, was he able to make a friend to play with, would he run? So many scary thoughts.
We started to prepare for Grade 1 towards the end of Kindergarten. A “Welcome to Grade 1” story with lots of photos was a big help! During the summer, with lots of assistance from Candice and Jessica, I put together an “All About Me” folder describing Conor’s “superpowers”, along with the areas that he struggled in. I wrote a letter to his teacher and support staff, as well as the parents of the children in his class, so they could understand Conor better. We were also very fortunate to meet with his Grade 1 teacher before school started again. It was so good for Conor to see his new classroom and have some one-on-one time with his teacher, and it allowed me to discuss my concerns about the upcoming year.
We are now almost at the end of Grade 1, and I am so thrilled to say it has been a very successful year for us. Conor has made great progress not only with his schoolwork, but more importantly to me, with his regulation and social skills. He has friends at school! It makes my heart smile to see him run to the door in the morning to hang out with the other kids – in Kindergarten I had to carry him to the door and then try to get him through it. He is not alone on the playground, and has not attempted to run. In fact, he watches the other kids and informs the supervisors if anyone is trying to leave the grounds!

Of course, it has not all been smooth sailing. His teacher and I brainstorm regularly to help him regulate and stay focused on tasks. Every week I have a copy of their schedule, and I load it onto his iPad so we can chat about the school day. I have advance notice about any changes to their day, and whether there will be a substitute teacher or aide. A “quiet corner” has been set up in his classroom, and there is the option of working outside the classroom to help with regulation. And of course, he can access the sensory room whenever he needs it.

I have also had to address quite a few social skills issues. I did a presentation to his class on ASD to help them to understand some of the “whys” with Conor’s behaviour. I contacted our school liaison worker to source out additional support when he is at school. I volunteer as much as I can to give back, and have met with the Principal and Vice Principals just to let them know who I am and to advocate for my son. I know I need to be a presence in the school for as long as he is there.

I am very happy to say that I am not dreading Grade 2, because I now know what we need to do to be prepared for the new school year. I’ll update my “All About Me” folder and letters to staff and parents. Over the summer break we will continue to work on academics (a little every day), keep a bit of a schedule, attend a summer camp, and continue to work on social skills and regulation. But we will always keep in mind that he still needs to enjoy his summer and have fun, just like any other child.

Central Alberta Movie Showing: Jack of the Red Hearts

Using the HALT Strategy to Increase Staff Empathy and Support Students

Sue Thomas, Gerry Gabrielle and Myles Bingham
Our classroom team consists of a teacher and two Educational Assistants who work with a dynamic group of teenagers with diagnoses that include autism, FASD and acquired brain injuries. Consistent communication between staff and students in this classroom is challenging, and communicating and understanding the students’ feelings and needs is an essential component of success. Implementing the Zones of Regulation helped the students to share how they are feeling upon arrival at school and throughout the school day. However, we found that an additional strategy was needed to more fully understand what students needed in order to be successful. Luckily, the “HALT” strategy has helped increase staff empathy for students’ basic needs and build a relationship of trust.
The HALT acronym represents a list of questions staff can ask themselves or the student to uncover how the student is presenting and what she or he may need to be successful. The word itself also helps staff to “halt” and take a moment to pause to ask these questions, and not rush into the classroom activities that are on the daily agenda. The success comes when all of the school staff use the same strategy and language to assess and engage the student, helping to uncover what they need in that moment.

Based on the answers from the student, staff can then take immediate measures to connect the student with the resource they require to be successful in the classroom. The adoption of the “HALT” strategy enhances the use of the Zones of Regulation at the school, which empowers students to express their feelings. HALT empowers the classroom team to identify and respond to the basic needs of each student.
Student Need
Examples of Staff Responses
Hungry
Allow student to eat some or all of their food as needed. We are able to source additional food for snacks.
Angry
Give the student a chance to go to the gym, ride on a stationary bike, play sports or play a relaxing game.
Lonely
Provide opportunity for social interactions/games (e.g. Rainbow Loom, floor puzzles, or Lego with a classmate).
Tired
Offer rest in a bean bag chair or on a mat to reset the body to move forward.
Here is a recent classroom scenario in which staff employed HALT to understand and meet the student’s immediate needs:
A student with autism arrived on the school bus. He was non-responsive to staff inquiries and greetings. Upon arrival in the classroom he began yelling and swearing at people. Staff asked him, “Why are you upset?” He continued to yell and berate a nearby classmate. All other students were removed from the room to reduce the audience and stimuli of having more noise and bodies around. Next, the student was given space and time. He was left alone for two minutes without engagement of any kind. After this two minute reset, staff followed the “HALT” line of questioning:
Staff: Did you eat breakfast? Do you want to have your snack now? (Hungry)
Student: No! They didn’t let me and I didn’t finish my game!
This is always the first question, and the student is allowed to eat all of his lunch if necessary. Our classroom team would rather the student eat all his food and be full, even if it means sourcing extra food for his lunch later in the day, instead of regulating how much he eats while he is displaying anxious and aggressive behaviour. After he has eaten, staff reassess his ability to move on with classroom activities. HALT plays a vital role as staff ask questions to uncover more information regarding his presentation and needs.
Staff: Why are you angry? What happened last night or this morning? (Angry)
Student: I couldn’t finish my game. They took all my toys away.
Staff: Did you sleep last night? (Tired)
Student: No… I didn’t sleep all that much.
Knowing that this student is hungry, sleep-deprived, and has had a conflict at his group home, staff can then help him to self-regulate by allowing him to rest and offering food. There is no point in engaging in a tug-of-war, trying to get the student to work on curriculum tasks before his basic needs are met. In this scenario, staff provided a bean bag chair for the student to rest on while they read a tale from a book of Greek mythology, the student’s preferred book. These two calming activities allowed for the student to get the rest he required and engage in a story. After one hour the student was able to refocus and continue on with his regular programming.
HALT is a simple strategy that can be implemented in the daily routine of a classroom. This strategy has increased staff awareness of students’ needs. Once these needs are recognized, staff empower students to verbalize what they need and utilize available resources to meet those needs.

Sue Thomas is an Educational Assistant with over twenty-five years of experience. She has a passion for working with children and adults with autism. Gerry Gabrielle is an Educational Assistant with a dynamic background, working with special needs children and adults in the classroom setting and in care facilities. Myles Bingham is a classroom teacher with a Master’s of Education Psychology with a focus on Special Education. As a part of Institutional Services Schools within the Edmonton Public School Board, this team works to support positive behaviour and build life skills for success in school and in the community.

The Light of My Life

Christine Lutz
January 30, 2012 was the day my son Joshua was born. It was one of the happiest days of my life, along with the birth of my first son. What I didn’t know then was that my new son would soon be teaching me the meaning of life.
From that day Josh was born, he was different. He didn’t have the natural ability to feed; the doctors were puzzled. After a few scary weeks of battling with weight loss, he finally learned how to feed. I knew then that we had a fighter.
As time went on, he was not meeting his developmental milestones, both physically and mentally. We went through a lot of testing, and he was eventually diagnosed with autism and other special needs before his second birthday. I cried, but I was relieved to finally have some answers. I knew it was going to be a long journey, but I wanted to be positive and focus on getting him the help needed. A diagnosis of autism can lead to heartbreak, poverty, grief, chaos, and even divorce; I was not going to let that happen. If I allowed this negative perception to take hold, how could I expect my son or anyone else to see the beauty in his autism? Autism can lead to courage, patience, commitment, understanding, problem solving, and strength that you never knew existed.
We have always treated him equally, and have never limited him. We have gone camping, visited busy malls, attended events, visited attractions, and taken long car rides and flights across Alberta and Canada. Some days it was rough, and yes, some days I wanted to give up, but I couldn’t. If I did, what kind of example would I have set for my sons? We don’t give up in this household – we improvise. If my son needs his music, air purifier and story theater in order to sleep, so be it. If we need to sing the ABCs a hundred times to get through the day, who cares? And if he needs to spin, jump, flap, rock and roll, well then, sometimes I will join him.
My son is now four years old, and he has taught me that there is so much more to life. He has taught me that no matter how hard life can get, you can’t give up. He has taught me not to take the little things for granted, and he has taught me how to fight.

Our house is barely ever quiet these days. His little feet are always moving, and his little voice is always mumbling. Life is chaotic, there is no doubt about that. We suffer through tears, tantrums, sleep, worries, scheduling, fears, acceptance, and more, but I wouldn’t want it any other way. He is the light of my life.

Christine Lutz is the President of the Chinook Autism Society. You can contact the Society at chinookautismsociety@gmail.com, or visit their Facebook group.

Autism x 2: What Happens When Your Second Child Is Diagnosed

Maureen Bennie

Originally published in the Autism Awareness Centre Inc. Blog

My son Marc was 2 years and 10 months old when he was first diagnosed with autism. I’d had clues: Marc wasn’t reaching certain developmental milestones like responding to his own name or waving goodbye. When I found out that Marc was on the spectrum I was devastated, but I was also relieved that my second child was a girl, because I thought there was little to no chance of her having autism, too. By the time Julia was 16 months old, I was rethinking that. Like Marc, Julia wasn’t exhibiting age-appropriate behaviour: there was no baby talk and she wasn’t responding to her name. One year after Marc was diagnosed, I was told that my second child was also on the spectrum. I will never forget the moment I received the diagnosis. I went through so many emotions and felt life was being completely unfair to me. I was full of resentment over having a second child with autism. The second diagnosis seemed impossible – how could this happen in one family?

 

What was hard in the early years was the level of difficulty each child had and how differently those difficulties presented themselves.
Our son, Marc, had no language until he was almost five. He relied on stimming to help with anxiety and self-soothe, engaging in video rewinding and obsessing over ceiling fans. His play centred around arranging toys. It took him hours to fall asleep, and he woke up frequently throughout the night. Marc followed a strict gluten-free/casein free diet from age 15 months on. He had frequent meltdowns and was hypersensitive. A paper cut could result in a 3-hour crying fit.
Julia, two years Marc’s junior, had the same language difficulty and also didn’t speak until nearly age 5. She would fall asleep at night, but wake at 2 AM as if it were morning and run around the house like a whirlwind. She had more imaginative play, concentrating on figurines and dolls. Julia was not a stimmer. She was more stubborn than Marc, and socially anxious and withdrawn. Julia would hold on to my leg all day. It took one year of therapy to successfully get her out of the house to do outings. She followed the same diet as Marc but would not eat the same foods within the diet. She was hyposensitive, requiring a high degree of input, and had a high pain tolerance.
Even with siblings, one size doesn’t fit all.
While there were similarities between both children, like toilet training difficulties, sleep disturbances, restricted diet, difficulty transitioning, anxiousness, and sensory integration disorder, their learning styles and how these challenges presented themselves required different approaches. For example, Marc communicated using PECS; Julia used sign language. Both children had completely different therapists because their learning styles varied. Marc loved using a Time Timer; Julia felt anxious about it. Each child was motivated by something different. Marc was eager to please; Julia didn’t care what anyone thought.
When it came time to start school, Marc clearly needed a specialized setting with a high level of aide support; for Julia, an inclusive setting. The decision for these two educational settings was the right one, and both flourished. Marc received more therapy for a longer period of time than Julia did. Marc had speech apraxia; Julia did not. They are both in high school and are now in the same specialized setting, although Julia can handle more independence. Each follows a curriculum designed with their needs in mind.
While the original diagnosis sent me into despair, I have seen a beautiful friendship develop between Marc and Julia over time – something that many people with autism struggle to find.
They are best friends and rarely have a disagreement. They are interested in each other’s passions. They are willing to try what makes the other one happy. The most important thing for them is to be together, whatever the activity. Even though they have such different needs, I am impressed how they fold into each other’s daily routines. Julia takes on more of a caregiver role with Marc, and he is happy to be cared for by her. Marc can interpret every whine and facial expression Julia makes, and she does the same for him.
Having two children on the spectrum has taught me how unique each child is even with the same diagnosis. Boys and girls present differently. You have to be flexible in your therapeutic approach, because what works for one child doesn’t for the other one. You have to develop different strategies for each child. You can learn from your mistakes on the first go-round and adjust for the second child. I read many books emphasizing different approaches to find information on what I could try for each child.
Expectations change with raising multiples – not only for the children, but for yourself. I am an expert at self-preservation because I know how hard it is to keep two children with autism happy and healthy. I need to be as fit and well-rested as I can be to tackle each day. Nothing has come easily, but I want to encourage new parents facing a second diagnosis that it’s not the end of the world. Just remember that each child has unique needs, and what worked for one child may not work for the second or the third. It is easier for us to adapt to the children than the other way around, so develop flexible thinking. Learn what is motivating for each child, how they communicate, what their learning style is. As the saying goes, if you’ve met one child with autism, you’ve met one child with autism, and this applies to children within the same family, too.
At the start of my multiple autism diagnosis journey, I thought this was the worst thing that could happen, but now I wouldn’t want it any other way.
Marc and Julia will always be together and will always have each other. They take delight in each other’s company. They accommodate and respect each other’s difficulties and preferences. Julia is stronger physically and better with life skills, but Marc has better academic skills and is less socially anxious when in public. Alone they might have never developed the communication and support skills that they have learned with each other. Together they are stronger, and they make an excellent life-long support team.

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 June 2016 issue of Autism Around Alberta, please send your submissions to AAA@autismalberta.ca by the deadline of Monday, June 13.

Making Room for Interactions

Jennifer Taylor, Susan Thomas and Gerry Gabrielle

Our journey towards integration of students with Autism Spectrum Disorder (ASD), acquired brain injury, and Fetal Alcohol Spectrum Disorder into our school posed some unique challenges. The school that we work in serves students with severe behaviour disorders, some of whom are on the spectrum and some of whom are not. All of our students are volatile and violent; in fact, this is the entry requirement to attend our school. In addition, a portion of our school population is involved in gangs and engaged in criminal activities. Adding to these challenges, our students often have mental health diagnoses such as anxiety, Tourette’s syndrome, and manic depression. We have a very complex population of students to manage.

Historically, our solution in managing these complex groups of student was to segregate them. Each grade level of students kept to themselves: Elementary, Junior High and High School. In addition, the students that had developmental difficulties, acquired brain damage or who were on the Autism Spectrum were housed in a portable on site. These Interactions students had limited access to the building; this school access was primarily to use the bathroom.
The result of these separations was to create silos in the school. Students who identified as part of one grade group were not welcoming or accepting of students who they considered to be part of another group. Nowhere was this more apparent than with the students in the interactions program. Students enrolled in our more academic programs would refer to these students as “portable” kids. The mainstream students would become very agitated and upset when the students with ASD came into the building, telling the students and staff that “those kids” needed to be out in the portable. The Interactions students were very clearly ostracized and not considered to be part of the school community.
Two years ago the action that we took to shift this belief and to build acceptance of students with ASD was simple but has made a profound difference: we moved our interactions program into the building. Simply by having our students with ASD in the building, we increased the frequency of casual interactions between our interactions students and our mainstream students. Through these interactions, students became more comfortable with people who they considered to be different or “other”. Teachers and Education Assistants in our mainstream programs supported growth of their students by teaching students how to interact with students having developmental delays. The results that we have seen are as follows:
  • The frequency of positive interactions between interaction students and mainstream students has increased
  • Teachers have welcomed interaction students into their classes with mainstream students
  • Interactions students have been able to experience our daily physical activity program, Science Olympics, the Terry Fox Run and other school wide activities
  • Interactions students have participated in off-site field trips including volunteering, newspaper delivery, and skiing
  • Work experience throughout the school has demonstrated to other students that Interactions students have valuable real world skills, and has resulted in increased respect for their abilities rather than their perceived disabilities

The results from a simple change in location, coupled with staff support and a welcoming school atmosphere, have demonstrated that sometimes simple changes can have a profound impact on school culture. By bringing our interactions students into the building, we have created an atmosphere of belonging instead of exclusion. We have fostered the building of relationships between Interactions students and our mainstream population. We have allowed both groups of students to increase their tolerance for people who are different than themselves. This has been a valuable learning experience.

Sometimes school change is possible without big budgets or extra resources. Sometimes we have to reframe our thinking about what is possible, and take a small first step. When we take these small steps, it may allow everyone to start to think differently about each other and start down the pathway toward increased acceptance. Based on our experience, we would urge schools to implement small, meaningful changes to practice that have the potential to make profound differences in the lives of students diagnosed with Autism Spectrum Disorder.

Jennifer Taylor, Susan Thomas and Gerry Gabrielle have worked for many years with students having severe behaviour disorders and mental health disorders, as well as acquired brain injury and Autism Spectrum Disorder. Susan and Gerry are long-time Educational Assistants who have extensive experience working with students in both educational and group home settings. Jennifer is a teacher with a Master’s Degree in Leadership and School Improvement with a focus on supporting at-risk youth.

Gearing Up to Go for the Cycle for Autism

Jade Nesvold

The Cycle for Autism is just around the corner, on Sunday, June 5, in Gold Bar Park!

If you haven’t registered yet, there’s still time – sign up online today! Once you’ve registered, you can add team members, customize your page, and even share through your favorite social media network.

Team members collect pledges and then run, roll, walk or cycle to raise money for Autism Edmonton: a local organization that provides essential information, services and support to people with autism and their families.

We’ve added a third route this year (approx. 3.5kms) that loops into Capilano Park, for those who want to go a little further without doing laps. There will be healthy and fun snacks, Choo-Choo the Clown, a face painter, sensory activities, and MORE!

We’re also pleased to introduce our new 2016 Cycle Ambassador: Peter Waligora, from Team Peter. To make the Cycle for Autism event even more meaningful and celebrate those in the autism community who have been involved, he’ll be cutting the ribbon to officially start the ride. Click on the image to see Peter’s story!

With the event coming up on June 5, this is our final drive for pledges. We know resources have been stretched for everyone lately. We also know how much can be accomplished when we all do a small part!

100% of the money raised at Cycle for Autism stays LOCAL and goes towards running and enhancing Autism Edmonton’s programs and services.

Pledge to your favorite team or make a general donation at www.cycleforautismedmonton.com/pledge. You can also donate by cash or cheque to any participating team member (payable to Autism Edmonton – please note the team’s name on the cheque).

We especially want to say THANK YOU to everyone who’s been involved in supporting us: our sponsors, teams, donors, volunteers, and staff.

If you have any questions about what to expect at the event, or what you need to bring, please have a look at the Cycle for Autism FAQs page.

Spread the word – we hope to see you there!

Building Your Transition Team

When it comes to planning for the transition to adulthood, determining who should be on your transition team is one of the first steps in fulfilling your future vision. Who makes up your transition team will depend on your youth’s goals and aspirations, and may include people such as:
  • family members
  • representatives from Human Services programs:
    • Your Family Support for Children with Disabilities (FSCD) Worker
    • Persons with Developmental Disabilities (PDD)
    • Assured Income for the Severely Handicapped (AISH)
    • Office of the Public Guardian and Trustee (OPGT)
    • Alberta Works
  • representatives from other government or community programs
  • Teachers and/or health professionals
  • service providers, friends, and others in your community you identify as being important in you or your youth’s life
Your transition team should consider what support may be needed to support achieving your goals. When thinking about this, your son or daughter should consider the following five questions:
  1. What are my goals?
  2. What skills do I need to learn to reach my goals?
  3. What local programs, services and supports are available to support me in reaching my goals?
  4. What responsibilities must school, government, cultural and community agencies, my family and I assume in order for me to reach my goals?
  5. Are there gaps or barriers to address in order to reach my goals?
Visit the Human Services Transition Planning webpage to learn more about the integrated approach to transition planning and proactive supports that are available. If you have any further questions about how FSCD can support transition planning, please contact your local FSCD office.

From Autism Canada

Laurie Mawlam


Autism Canada has watched, from across the country, as events have unfolded as a result of the Fort McMurray wildfire. Our hearts go out to everyone who has been affected, and we applaud those who have come forward to fight this fire and support people in need.
Over the last two months, we have sent letters and met with the offices of the Ministers of Health, Sports and Persons with Disabilities, and National Revenue. It is imperative that we find solutions at the national level that will have a direct impact on families and people living with autism. These may include making the Disability Tax Credit (DTC) Certificate Application form autism-friendly, or having the next Health Accord include, as a priority, reducing wait times and improving access to autism-specific supports and treatments across the lifespan regardless of the person’s IQ. We were very happy to see Prime Minister Trudeau make mental health a priority in his mandate letter to Minister Philpott. We know that there is a real shortage of professionals that will service people on the spectrum. We have been asked to forward examples of service models that work and we will certainly be doing that.
Just in time for World Autism Awareness Day, on April 2, we launched our 40th Anniversary Campaign celebrating advocacy, support and hope. Our anniversary micro-site, www.40.AutismCanada.org, is populated with wonderful messages of endorsements on how we have made an impact. Please take time and read what others have had to say.
Last but not least, media outlets from across the country have reprinted a great Opinion Editorial by Autism Canada’s Executive Director on Universal Screening for Autism. It was originally published in the Toronto Star, but can now be read in the Huffington Post, Vancouver Province, Winnipeg Free Press, Waterloo Regional Record, Halifax Chronicle Herald, Moncton Times & Transcript, Fredericton Daily Gleaner and Google News. If you have suggestions on other articles you would like written, reach out and let us know.

Find Your Tribe

Candice Bowie, as told to Erin Peden

About a month ago, I went for coffee with a friend who wanted some help putting together an article about motherhood and autism. I cherish those stolen moments away from the house and into the real world. Somehow, what used to be a simple cup of joe in a chatty, cozy coffee house has become as spectacular as a day at the spa, and sharing that moment with this friend made it even better. She’s the kind of gem everybody wishes they had on their friend list. When you’re with her, you know she’s listening. She’s beyond understanding – and if her experience is different than yours, she’s sincerely empathetic. She’s real. She’s raw. And she’s one of the gift’s I was blessed with when I embarked on the journey of parenting a child with autism.

Thank you, Candice, for sharing this story.

Mother’s Day has come and gone, and every year around this time I can’t help but reflect on my own motherhood adventure. I’m sure many mothers would be able to say that a portion of their life has been quite lonely, as we naturally hand ourselves over to the experiences of our children rather than our own wellbeing. But parenting a child with autism is a different ride altogether. If there was one thing I would tell the mother of a newly diagnosed child it would be this: at the moment you feel as though you’ve lost yourself completely, hold on. Your life is about to become rich and beautiful and full of souls who sweeten your life immeasurably. You, my friend, are about to find your tribe.
Remember how life used to look?

When we were younger than we are today, it was easy to slip into the pre-designed pictures of our futures. Our visions of tomorrow and the days beyond it were pretty, neat and tidy, and full of smiles and laughter. In our imaginative futures we’re surrounded by our friends and creating perfect birthday cakes for our children’s massive birthday parties. We’re sitting in our front yards with a cool drink in our hand, chatting with our neighbours as our children ride their bikes around the neighbourhood. Our friends would gather in our homes as we celebrated the significant successes our children reach – like Kindergarten and driver’s licenses and graduation.

Indeed, that might have been how life used to look. But then one day we find ourselves sitting in a doctor’s office with our perfect little babies on our laps, and we watch the professional’s lips form the word autism.

There’s really no way to describe the shift in life that happens at that exact moment. Instantly, you gear down. You’re going faster. You’re working harder. Hours upon hours are spent on the computer researching therapies, on the phone arranging appointments and filling out paperwork – all the while grieving the future you never got to see.
You become consumed – not only with creating the best environment for your child – but clearing the clutter of your brain and trying to re-learn how to function as a family now that a diagnosis plays such a huge role in your home. You stop returning phone calls to friends – your child can’t possibly attend that playdate, anyway! Evenings out and home parties become less important. Beyond that, they don’t get it. They don’t know what an average day looks like in your home, even though they tell you they totally know what it’s like to have a “busy” kid. They still get to talk about soccer and hockey and ballet and piano and how their children are developing. The fire fizzles, the friendships peter.
And sometimes, so do we. In the back of your brain you’re recognizing that you’re losing a part of yourself and that your identity has become far more about your child’s autism than about you – but just when you’re about to be hit by the self-loathing/pity train your child picks up a crayon (PICKS UP A CRAYON!!!) – and all of a sudden it doesn’t matter that you haven’t left the house in six months because this is monumental!
The feeling of success is a good one, so you hunker down to discover which goal will be the next attainable milestone. At about the same time, you realize you need to focus on spreading the mom-love to your other children before they become as invisible as yourself. And the marriage – oh yeah, the marriage! Your husband finds a place on the calendar, pencilled in, of course, because reality dictates that the moon has more say in your schedule than he does.
You continue to play the hand you’re dealt – but you realize you’re playing it alone. Former friendships are lost, loneliness ensues and life becomes about nothing more than putting one foot in front of the other.
For me, life changed the day I was literally putting one foot in front of the other. My son had taken the bus to his special needs preschool that day, and I was being “brave” by not following the bus right to the door of the school. Instead, I made my way to the gym and jumped on a treadmill. As it happened, the woman on the machine next to me also had a child attending the preschool, and I struck up conversation by asking if she happened to notice if my kid got off the bus.
And that was all it took.
I found my person.
Finding someone who understood (like, really understood) what my days look like opened the floodgate of conversations and laughter and sincere friendship I had been desperately missing since autism came to my house. There is unbounded comfort in finding someone you can celebrate your chaotic life with – someone who has shed the same tears over the same fears, applauded the same successes and can laugh at some of the craziness our lives present us with.
It became apparent that there was a world of mothers who knew what it was like to be me. Women who can laugh at the prospects of having adult children living in their basements. Women who build their strength – not because they want a rockin’ body, but because they need to be able to tackle their child should imminent danger appear. Women who will brave the grocery store – not only with their ASD kid, but yours too, because you need that time. Women who sit on your couch with you and cry through your collective laughter and laugh through your messy tears. Women who stand with your husband when you’re not able to. Women who never, ever leave your side.
When I found these women, I found myself. And had my world not been rocked in a way I had never anticipated, I wouldn’t have found my clan. This group of raw, real women who understand what each other have sacrificed just to get from one day to the other are the blocks that make up my foundation.
They are my tribe.
So keep putting one foot in front of the other – you’re heading in the right direction.
You’re just one step away from finding your people.