A mother’s job is to help prepare her child for the journey towards adulthood. She is their support crew, helping them pack their backpacks, learning to navigate all life’s pathways, and finally – and hopefully – sending them on their way. When a child has an autism, a mom’s job can become extraordinarily stressful, challenging, and involve bumps in the road towards achieving their goals. This Mother’s Day, I asked some very special mothers of autistic children to share stories of their child’s journey towards adulthood. You may identify with these reflections and I hope you will be inspired by them as you celebrate Mother’s Day in your own special way. Irrespective of what stage or story you are at in your child’s journey, you will always be a mother and no other job can replace it.
The Trip of a Lifetime
“Our daughter, Ella*, with autism is in her mid-twenties and has developmental, social, communication, and learning challenges. A year ago she was laid off her part-time job. While we were all very upset, we decided to utilize this opportunity to help her achieve her life goals beyond the employment/vocation domain.
Since her early teen years, she has had a special interest in Japanese culture and her dream was to travel there. Over the past year, our family mission has been to put this special interest to good use: to help her develop independent living skills towards this travel goal. Her older sister, Tina* had already planned a trip to Hong Kong and offered to meet her in Tokyo.
The challenge, then, was to help Ella develop the skills to enable her to independently and safely travel from Calgary to Tokyo. Some of the steps we helped her take in preparation included: practicing the navigation of international airports; hiring a Japanese tutor to help her learn the language and troubleshoot possible challenges and complications; and booking her a direct flight with special assistance and a meal to accommodate her dietary restrictions. Ella had a safe trip to Tokyo and had the time of her life travelling around Japan with her sister Tina! To some, this may seem like a small step, but for Ella it is a giant leap forward. This Mother’s Day she will be home and we will celebrate more accomplishments in her journey towards adulthood. “
*Name has been changed to protect the privacy of the individual
More than a Simple Task
“As the mother of a severe non-verbal individual with autism who is now an adult, I have had many situations where tremendous effort has been given to help my son learn a new skill or manage a challenging behaviour. Although he is severe on the autism spectrum, he does not stop learning! He is first an amazing individual, who secondly struggles with challenges. One beautiful example of effort and outcome was in our effort to teach him (when he was about 17 years old) to do up his zipper on a coat. This simple and what seems to be unimportant task for many of us took him 1 year to master. Each time, for at least a year, when a zipper was required, we worked on manual dexterity, understanding of the sequence of movements involved, and the verbal prompts required to accomplish this task. He finally mastered the task, and now (with pride) always works diligently to get his zippers done up!! Not only does he feel good about his ability and success, it is a step towards independence and lessens the reliance and time needed from me. A great gift that, although for some may seem petty, for me always brings a smile to my face.”
Thanksgiving for Mother’s Day
“Mother’s day in 1996, we gave thanks for the birth of our new baby boy. Years later, we are still giving thanks for our beautiful son and his accomplishments. He has had his share of challenges along the way, but is ready to make his way forward into adulthood. It has taken a little longer than perhaps his typical peers, but now he keeps his own schedule, contributes to chores at home, he’s enrolled at SAIT and is interviewing for a part-time job next week which he applied for by himself without any encouragement!
What have we done to help him with the transition? There is a fine line one must walk as a parent… Provide needed support while fighting the urge to overprotect. Celebrate each accomplishment but don’t make a big deal when the inevitable disappointments come along. Play on strengths, while supporting growth in those areas of weakness. Try to connect him with services and mentors who can offer support but also embrace the fact that you are the best advocate for your son and take on the challenge. Recognize the uniqueness of your own situation but be open to ideas and suggestions from others.
We haven’t always succeeded in striking the right balance. Despite that, our son is growing into a fine young man, and this Mother’s Day I am proud to be his mother.”
Transitioning in Social Settings
“Individuals with autism have varying challenges when exploring the countless types of transitions they face in life. Several factors can contribute to a transition being a success or failure. For example, socialization for people with autism is often heavily impacted and many are not comfortable being in a group setting. This can result in poor interaction with people in the group.
Until recently, this has been the difficult reality for my autistic son. Wanting to do my best to set him up for positive experiences with his peers and other groups, I registered him in a couple of fun and motivational classes that attracted his interest. The goal, and my hope, was that his experiences in the classes would lead to a sense of comfort in his transition from being isolated to more inclusive settings.
As my son’s biggest advocate I wanted to set him up for success. Because I feel I know him better than anyone, I often help him identify a goal to work on, and I do my best to seek out resources that will give him a way to achieve the goal.
In this case, the strategies have resulted in my son making successful transitions to group situations. I am so proud of him!”
One Mother to Another
“I am the lucky mother to two beautiful girls. My youngest, now a beautiful teen, is severely affected with autism and the challenges that come with it. Though difficult sometimes, we have followed some wonderful advice given when she was first diagnosed: don’t hide, get out as a family and live life…your daughter will benefit so much from the exposure to new things. Over the years we have been guided by wonderful professionals and supports to help us prepare our daughter for these new experiences and give us the strategies to make them more successful.
There are far more successes now but still not always easy, especially when this involves air travel. I often travel alone with my daughter as she tends to have some longer breaks from school. On a recent particularly long day of travel, I was feeling both mentally and physically exhausted as we went through security yet again. Finally, shoes back on, electronics back in the carry-on and favourite water bottle filled again, we rushed off to yet another connection. Halfway there I realized she was missing a shoe. Maybe due to her limited communication she didn’t even try to tell me, or possibly she didn’t even notice; I certainly did not. We retraced our route and sure enough, half-way back, we found her little flower running shoe. How it fell off I will never know.
At that point we had to hurry, which does not go over well with her and can’t be forced. Frustrated and panicked we made it just in time for the call to board. As usual, my daughter tried to sit in every seat so I pushed her forward while dragging my carry-on, purse and her backpack. I nudged her over to the window seat to sit and started frantically pulling out books, computer, iPads, licorice…anything to try to quiet her and keep her still. At that point I was anxious and tired making her more agitated, which started her rocking, rubbing her hands together and making her even more unique sounds. I turned to apologize to the women behind me as I tried to keep my daughter from rocking in her seat. The woman gave me the loveliest smile and said “Don’t you worry, I am a teacher and have 3 of my own…she isn’t bothering me at all”. Wow, what her understanding and kindness did for me! I felt myself relax and all of a sudden so did my daughter. It was a wonderful flight and a lovely holiday. Kind words from another Mother. She will never know how that changed the rest of the trip for both me and my daughter. To all mothers…let’s continue to support one another and enjoy our amazing children. Happy Mother’s Day!”
Riding the Waves
“I know Mother’s Day is coming, although I barely notice the hype anymore. Flyers come to the house, reminders flood my e-mail inbox, and my social media accounts are slowly revealing more marketing and feel-good stories aimed at mothers. The implied expectation is that we are to show love and appreciation to our moms through gifts, Hallmark cards, food, and family gatherings. While I might have been a bit cynical about it a few years ago, I humbly acknowledge the importance of the day to many mothers, and confess that my expectations of my own kids has become the same as every other day—to do the best that they can do that day, be kind, have fun, and love one another—and I’m really okay with that. It means that every day is mother’s day!
Being a mom of a young autistic adult has helped me accept that the day-to-day expectations of the world we live in are sometimes more than enough to tackle. As my son grew up alongside his typical and not-so-typical peers, the job of providing him with direction, a rudder, sometimes engine power, and course corrections (combined with love, discipline, coaching, patience, acceptance and lots of prayer) sometimes felt like a lot of work on my part. I have felt physically, mentally and emotionally exhausted, and been misunderstood by my own mom-peers at times. I can only imagine how it felt to my son who has weathered many storms (school, social relationships, travel, and part-time employment) and triumphed–when loneliness, frustration, discouragement and anxiety threatened to sink him.
While his journey to adulthood and independence continues, my expectations will remain the same and I will continue to celebrate his victories. I have transitioned from captain and life preserver to tugboat, on standby as needed, as he becomes more ready to chart his own course and steer his own ship with confidence and hope. Truthfully, I tend to get motion-sick on a real boat, but riding the waves of my son’s life journey alongside him is exciting…and I look forward to having the usual (6 feet apart) breakfast and coffee with both of my kids on Mother’s day.”
If you are a mom (or dad) of an individual with autism, or an autistic parent who would like to talk with someone about autism information or navigating to resources, please contact our Resource Centre by email firstname.lastname@example.org.