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Self-Care Tips for Caregivers of Autistic Children: 25 Years of Lived Experience

May 1st, 2020

Can you see the light at the end of the tunnel?”

A question I have been asked over a hundred times throughout the years.

It all started some 23 years ago when I noticed my son, then 2.5 years of age, was gradually talking less, focusing only on his interests, and withdrawing. My parental instinct told me there was something wrong. By the time he started preschool, he was very behind in verbal communication compared to his peers. He could not even use the vocabulary that he was using when he was one. He eventually got assessed at Sunnyhill with a diagnosis of PDD-NOS (DSM IV) at the age of 3.5. After a lot of research and study, we understood that it is part of Autism Spectrum Disorder (ASD). Finally, at the age of five, just before he started Kindergarten, a reassessment at Sunnyhill gave Adrian a formal diagnosis of ASD, so that he could have the extra support he needed at school.

 

 

Back in the 90s, we didn’t have much support in the province. We did everything on our own with help from a group of parents, bringing consultants over from the States and setting up home programs from scratch with no support nor guidance. Sourcing funds, interviewing and contracting professionals, hiring and training support workers and coordinating meetings, all fell on the shoulder of families. We were lucky to have financial support from family and guidance from parents who had walked this path before us, which made things a little less stressful. That was the time the poem “Welcome to Holland” by Emily Perl Kingsley was sent to new parents with special needs children, which, in a sense, comforted us. 

Adrian was fully integrated into his elementary school with one-on-one support and an excellent team of teachers and staff worked closely with our home team. We felt fortunate that he didn’t display any aggression nor frequent meltdowns. The biggest challenge we had was his asynchronous development. He could disassemble any remote control but could not answer simple yes/no questions; he was able to label all seven dwarves in “Snow White” but was not able to call his cousin or auntie by name. Maintaining his mastered skills while teaching him new skills was very difficult. He was a fast learner, in a sense, but also would lose them fast if not maintained. He had a non-verbal IQ close to his peers but a non-testable verbal IQ. He understood a lot of things receptively but had difficulties expressing in language. He had high IQ but low EQ / SQ. All these discrepancies had created a lot of frustration for both Adrian and us. Soon, I realized that it is not only in “Holland” I had to learn to survive, but also in different countries at different times. 

As he grew older, the mellow, happy, and cheerful boy, all of a sudden, became aggressive at times. Things that were never a concern, such as self-hitting, self-biting, bolting and screaming in public, and sudden mood swings, all came at the same time. Busy dealing with his puberty, we were overwhelmed and lost with all these unforeseen changes. I would stay up late to watch his videos from home sessions, read all information sent from schools, and hold meetings with support workers to address all these challenges.

 

It was at this critical time that both of my parents, who were the two significant caretakers and support of Adrian and our family, passed away within two years when I was taking care of three of them in the same household. In that same year, when my father was on palliative care at home, Adrian graduated from high school. I was managing two teams of staff, five from dad’s palliative care and six from Adrian’s home program, writing and checking charts on vitals and data on behaviour daily, running meetings, and coordinating shifts weekly. I was like running residential care at home with two intensive needs. It was not until one day a health nurse looked at me and said,

“You have to take care of yourself. Otherwise, a palliative bed will be waiting for you next to your dad’s bed soon.”

At that point, I realized that I had been neglecting myself for too long. I used to have a very balanced life, and overall, a chill and easy-going personality. After all these years of putting everything on my shoulder, I had lost track of my well-being.

 

 

Knowing that Adrian won’t be independent in the foreseeable future, I decided that it will be my life goal to keep the whole family in shape, including health and emotions. I came up with a daily routine: everybody will have their own private “downtime” and “solitary time” to wind down and reflect. For one hour or so every day, I stick to the following rules: 

  • Do something WITHOUT PURPOSE — I spend some time playing on the piano, listening to my favourite music, or watching random drama on TV, or simply just doing nothing. 
  • Do something I WANT TO, not something I NEED TO — hanging out with friends, taking a walk around the lake, or reading a novel. 
  • Focus on MYSELF — pampering yourself, shopping for some useless stuff that makes me smile, enjoying a cup of mocha macchiato and diffusing sandalwood in the room, doing yoga or stretching along with my favourite music. 

 

 

Besides spending time alone, we came up with the routine of spending time as a family: 

  • Spend time as a FAMILY and with EXTENDED FAMILY — when Adrian was young, we used to travel as a family back to Asia to visit our extended family. I could leave him with his grandparents or aunts and uncles, and they spent great times together. As he grew older, plane travel was not an option anymore because of his anxiety, and we moved the annual vacation to local travel (by car). Spending time as a family and with extended family where the focus is not on “improving his skills” but instead getting away just to hang out, was a “real break” for all of us where we can enjoy one another and doing silly things together. 
  • Spend time ONE-ON-ONE — we deliberately pick a time when we can spend time one-on-one among us: mother and son, father and son, or husband and wife. It allows us to appreciate each other’s strengths AND weaknesses. 
  • Find COMMON INTERESTS — we develop a habit that we will “do things together.” Watching a TV show, attending a concert, or even just going to the park. Something simple and easy to achieve with the least preparation. 

 

 

Remember, happy parents make happy children. Adrian does not only copy behaviours but also emotions. He reacts to our emotions fast. We have to remind ourselves to keep calm even when he does something that drives us crazy, like punching holes on the walls, destroying computers, putting stainless steel containers in the microwave, and turning on the washer without detergent at 3 am, etc. To do that, I practice these: 

 

  • ONE THING AT A TIME — Focus on one thing at a time. Praise ourselves if we can achieve one thing a day. E.g., no meltdown in one day, go shopping together where lining up is not an issue, or eat out in a restaurant and stay together at the table for an hour. Yay ????! 
  • CREATE A SUPPORT NETWORK — It is easier said than done when it comes to controlling your temper. When I find it too much to deal with, I call up my support network and find relief. Interestingly, we often work so hard to set up “circles of friends” for our children and forget about setting up our own circle. Not only do we need support from parents and families like us who are going through (or have gone through) the same journey, we also need a more diverse circle of friends. It helps us see things from a “fresh eye” and, at the same time, affirms the different decisions we have to make as parents. Knowing that you are not alone is crucial. 
  • PRIORITIZE — While we understand that everything seems to be “urgent” in our lives, getting our child’s teeth fixed, finding the right workers, or securing the services…we need to prioritize and tackle it one by one. Set short term goals so that we can take breaks in between. 
  • SET REALISTIC GOALS — It is good to establish long term goals, but don’t forget to set short term goals as well. It is also essential to set realistic goals. The hope of him being semi-independent when he reaches 40 is a good goal, but him being able to prepare his meals and clean up afterward in the coming year is great as well. Or, even setting a goal that he can choose a balanced meal at the end of the month is an important and realistic goal. Doing this will give you a chance to celebrate successes more often and be encouraged to keep going. 
  • DON’T COMPARE — As parents, we know we should not compare our children, but we know that deep down in our hearts, it sometimes is challenging not to do so. Comparing your child with others only does more harm than good. Just keep in mind that your child is unique, and we are here to help them to reach their potential. 
  • DON’T GIVE UP OR BE DISCOURAGED — Having been a caretaker for 25 years, I have learned not to give up. Your child will take you by surprise EVERY day. Don’t be discouraged when people are giving you negative comments. You are the expert of your child, and you know what’s best for them. We can never tell how far they can go until we keep trying.
  • DON’T LOSE YOUR SENSE OF HUMOUR — When things don’t turn out the way you want, take it easy. I remember when my son’s support workers told me in a meeting that Adrian still put everything, such as playdough, in his mouth after working on it for months or even years. As he was also working on using utensils for food, I made a witty comment by saying, “At least give him a spoon.”???? Oh well, we have to remember when he is not ready, you just need to keep working on it. 
  • DON’T CARRY THAT CAREGIVER GUILT — There are always things that you could have done better: taking them for assessment earlier, getting a better consultant, or advocating more. But remember you have already done your best at that very time. Move on. 
  • TAKE ONE DAY AT A TIME — When your plate is full, you need to make room before you can put more on. Make sure you save some room for your “wants,” not just “shoulds.” 
  • REMEMBER THERE ARE ALWAYS HOPE AND OPTIONS — Sometimes, we think we are running out of options. I had tried everything when it came to therapy back when we started the journey. I have advocated with every tool that I could think of to address my son’s needs. When I felt like I have exhausted all options, I asked around and sought help. To my surprise, there were always more options to explore. Things change, and situations change. When needed, seek professional advice. A good counsellor, a great doctor, an excellent social worker, or even a solid support group, makes a huge difference. 
  • MEDITATE AND REFLECT — This is what I do every evening before I go to bed. It allows me to unwind and unload my burdens before falling asleep. Before my bedtime prayer, I count my blessings and focus on what I have achieved that day and leave all the troubles for tomorrow. 

With a 25-year-old that has complex needs, it is not easy to get everything worked out according to our plans sometimes. However, nobody stops learning at 25, nor do their parents. Our family just takes every failure as a learning opportunity, and we look forward to seeing a better outcome next time around. 

So, to answer the question from the beginning: 

Yes, I can see the light at the end of the tunnel, every night, when I go to bed. 

I know there will be anew tunnel to cross tomorrow, but for now, I will sleep well for the night.

 

Written by Lindy Chau, Information Officer


If you wish to chat with Lindy, feel free to reach out to her here.

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