Inside The Spectrum #20

Who Cares for the Caregiver?

By Tanya Joseph | Educator | Autism Advocate | Founder of Nicko's Mom

Autism parents will bend over backwards for their children. There are no ifs, ands, or buts about it!

We will advocate, sacrifice, research, comfort, encourage, transport, feed, protect, and love with every ounce of strength we have. But what happens when the caregiver is running on empty?

At the Blue Wave Autism Fair in April, we created a Parent Respite Area. For a few hours, the focus shifted from our children to the people caring for them. Parents received mini massages, opportunities to talk, moments to breathe, and reminders that they mattered too. It was beautiful. But that was April, and we are now in June.

Let me give you a glimpse into a week in the life of Nickolas and myself.

This week, Nickolas experienced three meltdowns. One was triggered by a change in our living arrangements. Another was caused by sensory overload from a particular genre and volume of music selection. Then there are certain words that he considers “bad words.” Hearing them can cause significant distress.

In each situation, I became the safe place. I listened. I talked. I hugged. I reassured. I encouraged. As parents, we learn that what worked when our children were younger may not work now, they are older. Nickolas is a grown man. Yet support is still needed, but the methods have changed. Some changes he can manage, while others must be introduced slowly and carefully with much scaffolding by me.

At the same time, life continues!

We are currently without transportation, so we walk. That has been challenging as I sprained two toes some time ago, and they have not fully healed, yet every day I make the journey to work and back. On my way home, I usually send Nickolas a message as a way of getting him talking to someone during the daytime.

“What’s up, Nicks? I’m on my way home. Is there anything you want me to bring for you?”

His answer is almost always the same.

“Doritos and a Coke with sugar!”

FYI; I accidentally brought him a Coke Zero once. Let me just say he has never let me forget it. Now he makes sure to specify exactly which Coke he wants.

This is just the tip of the iceberg. Most days, I prepare two separate meals because Nickolas is currently in his “beige foods” phase. Alongside that, I handle all the other responsibilities that come with being a mother.

Additionally, I am also intentionally working on helping him become more independent. We have cooking sessions, cleaning sessions, and even our own little date nights where we sit and talk about the “important” things in life. These moments are not only opportunities to teach life skills but also to build trust, connection, and confidence.

I do all of this, and so much more, while working full-time as a high school Biology teacher. Like many autism parents, I wear multiple hats throughout the day: educator, advocate, counsellor, chauffeur, chef, life coach, and mother. It is a labour of love, but it is also physically, emotionally, and mentally demanding.

Saturdays are designated as “Nicko’s Days.” We attend football training, and afterward I usually take him for a snack. Sundays are my days. I prepare for the work week, catch up on chores, and try to find a little time to rest and recharge.

As exhausting as my days can be, I know I am not alone.

Recently, I spoke with another single mother on this journey. Her child only eats one specific type of meal and prefers snacks of only one colour. If the food is not exactly right, the child simply will not eat. Imagine carrying the constant responsibility of ensuring proper nutrition while managing the financial strain that comes with purchasing specific foods over and over again. Yet she does it. Every day.

As she shared her story, I was reminded that every autism family carries a different burden. The details may differ, but the weight is real.

And so, I ask again: Who cares for the caregiver?

Who checks on the parent who spends their days checking on everyone else?

As autism parents, we often become experts at caring for others. Perhaps it is time that someone cared for us too.

This is why respite matters! It is not a luxury. It is not selfish. It is Necessary! Caregivers need opportunities to rest, connect, laugh, cry, recharge, and simply be human.

When we support autism families, we must remember that behind every child is a caregiver doing their absolute best, often while running on very little sleep, energy, or support.

This understanding is what inspired the creation of “The Village That Cares”, a parent support and respite initiative that will be launched at the end of June. The vision is simple: to create a space where parents can gather, share their journeys, encourage one another, and take a moment to breathe while their children are cared for in a safe and supportive environment.

The caregiver may be one person, but the impact of supporting that caregiver reaches far beyond the walls of their home.

When we strengthen families, we strengthen communities. And when communities are strengthened, we move one step closer to creating the inclusive society we wish to see.

My charge to you, the general public, is this; let us see how much we can accomplish for Autistic Individuals when we work together.

Change will only come when we all chip in…so “Chip In” and lets change the world!

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Call or whatsapp: 1-268-789-9009

Until next time… this is Nicko’s Mom reminding you that care givers matter too!

Tanya Joseph

Autism Acceptance Advocate | Educator | Caribbean Sign Language Interpreter

Founder, Nicko's Mom

"Advancing Neurodiversity for a More Inclusive Society"