Having a child with a developmental disability is a unique experience, joy, and challenge for each family supporting them. Some have children who are non-verbal, some with extreme physical aggression, some with very complex behaviour and/or medical needs. Some appear less noticeable and that’s where we are.

If you know Gracie, you likely know her to be a very outgoing, charming, and excitable young woman. A woman who is happy and enjoys the little things in life that we sometimes take for granted. She was described by others (and myself) in the past as a “high functioning” autistic. In today’s world with the levels of autism, I would image that most people would consider her a level 1. However, I would be curious to know what her clinical diagnosis would be on this.

Because Gracie comes across as very verbal, she appears to understand more than what she does. Others don’t see the challenges she faces on the daily and if I’m being honest, it’s hard for me to see or understand at times. This “invisible” disability makes it hard for even myself to remember she has autism, and I think that is part of our problem these days.

Cleaning out her closet, she had a stash of 12 shampoos, 9 deodorants, and several bars of soap. Empty food packets strewn about. We found $1000 worth of gift cards scattered in different baskets. Her weekly grocery shopping consists of the same items causing our cupboards, fridge and freezer to fill up with multiples. The food is often family size portions that has caused a quick and unsafe weight gain. The misunderstandings of Gracie assuming false narratives based on two or more conversations that’s she’s pieced together are causing havoc. And the fights…oh man, they have been ongoing for over a year now and gradually getting worse. Her meltdowns as a child of screaming, scratching, ripping, throwing, and hitting are no longer. The adult version is yelling, sometimes swearing, but mostly being rude with an attitude, and speaking with so much sass! And 99% of the time it’s directed at me, her mom. It is always related to food, often related to misunderstandings, and likely always related to the symptoms of autism and her executive functioning.

I’ve always told Gracie that having a diagnosis of autism is not an excuse to be rude and mean to people. She may learn things differently and struggle in ways that others don’t understand. Meltdowns weren’t considered rude, it was her learning how to process things with our guidance. So, is this new behaviour of rudeness, yelling and talking back, an adult version of a meltdown?

I’m struggling to be compassionate. I don’t know what is in her control versus out of her control. I don’t like being the target of her anger or anxiety, yet I also know I’m her safe person and external brain that helps her navigate difficult times. It’s been hard.

I wasn’t sure what I was going to write about today, but writing helps me organize my thoughts and reflect. Reading back, I know this doesn’t sound half as challenging of what many of you are going through. I think that is another area that isn’t talked about. Those of us that have children with an invisible disability often times feel guilty for complaining or stressing about our own challenges when we know some family members are bruised from physical aggression, they don’t sleep because they need to supervise their child who is up all night, or maybe you are struggling with a loved one with complex medical needs and you worry sick about their health. My issues are so minor compared to that. How can I complain? But what I’ve also come to learn is that it is important to recognize that things can be hard sometimes. I don’t need to compare myself with others. I don’t need to convince myself that it’s okay to talk about our struggles and I don’t need to make a list of all the other things I have going on in my life that make minor things feel bigger to justify feeling tired, exhausted, frustrated and overwhelmed. Whatever we feel is okay to feel. And natural. So to those of you who have much bigger stressors than the few I’ve mentioned here, I see you. And my heart is with you. And also for those of you who are dealing with stressors that others might question or think small, I see you too. We are all in this with our own experiences.

Thank you for listening. It felt good to write it out. I encourage you to call a friend, write in a journal, or see a therapist if things are hard. You don’t have to do this alone. And no matter how small your problems may seem to others, you matter. And whatever you feel matters.

Sending love, patience, and peace to each and every one of you who is a parent and caregiver. You are not alone. xo