Our Autism Journey

By An Adopt4Life Community Parent

When my daughter moved home at age 3, we know she had needs, that she would need support and therapy—what we didn’t know at the time, is that she would be diagnosed with level 3 or Severe autism and develop significant self injurious behaviours.

I remember this first few weeks after she moved home, simple things like having her transition from the dinner table to the floor after a meal was an incredible trigger that could mean hours upon hours of tantrums and self-harm. Here she was, a beautiful little girl with needs so great that her initial crown ward papers included statements like “it is the courts belief that a child of her nature will never be adopted” screaming, crying, banging her head, slapping her face and hurting us, her new parents.

It was close to a month into her placement that I turned to my husband and finally said that I don’t think I can do this, that we made a mistake and her needs were far too great.

A child, who had such a level of self-harm that she knocked her front teeth out at school, who refused to eat unless my husband turned on the water at the sink and play with water long enough for her to laugh and for me to shovel a spoonful of food into her mouth.

The truth is, we had no idea how hard this was going to be, and just how much help we needed.

Many nights we stayed up researching, learning, going to classes and asking for help. Calling all service providers available and seeking respite. It became my full time job and almost an obsession to try and figure out how to help our little girl.

During one of these meetings, someone mentioned the word Autism to us. Our daughter had over 21 diagnoses at this point and I never really understood why number 22 would be any different than the rest. But alas, another assessment, another pile of paperwork and our little one was given a new diagnoses of Autism level 3—formally known as severe autism. Once again, we were put on never-ending waitlists.

I wish there was an ending to the story that can be tied up in a neat bow. I had hoped that there was a fairy tale ending—but the simple truth is that 10 years later, we are still here and advocating for her.

What has changed? Well, a lot. I learned to not fear the word crisis. We realized that her best interest and the safety of all of us meant that we cannot do this alone. We’ve opened our home to daily workers, weekly therapy and trial surgery medication. We realized that in order to be her parents, we simply cannot be her caregivers 24/7 and slowly began to see the (now not so little) girl we fell in love with hiding behind her complex needs.

For any families who may be struggling with a child who has similar needs, know there is support out there, know that you aren’t alone. And know that we are #stongertogether

The opinions expressed in blogs posted reflect their author and do not represent any official stance of Adopt4Life. We respect the diversity of opinions within the adoption, kinship and customary care community and hope that these posts will stimulate meaningful conversations.