I remember the meeting.
Walking into a near-empty school. Parents who had been called to meet the teacher and principal.
Confused. Anxious.
Naive.
After we sat through the necessary small talk the teachers got to the point. They advised us that they wanted us to go through testing for Myles. That he was displaying some ‘signs’.
Myles dad posed the question
“Signs of what”
The response stunned us into silence.
Autism.
I remember the blank stare my ex gave me …. what IS that? We didn’t know a single person, had no connection or knowledge to this small word that had just changed our lives forever.
The night was spent like I imagine most parents spend it after hearing the word pass from the lips of educators or specialists to their ears and into their aching hearts. Looking up online tests, completing surveys and checklists, watching videos and reading countless medical articles and personal blogs (Hello!). After looking through a slew of stories about how Hard parenting an autistic child is and everything from meltdowns to finances, when we were limp from exhaustion, eyes and brain burning from reading all the material, unable to make a coherent thought because we had just researched a thousand different ways to treat (or not treat), about diets, exercise, specialists and a MILLION different acronyms, we eventually fell asleep.
The next day brought new frustrations. Calls only to find out about long wait times. Calls to therapists and programs to find out he was either too young or about to age out shortly. No parent group to reach out to, support networks and resources wanted an official diagnosis, family and friends had no idea what to say …. all I wanted was to talk to someone about how conflicted I was feeling. Talk to Anyone that had been in my shoes and knew about the journey our family was about to embark on.
I felt so incredibly alone.
Every site I went on talked about curing Autism and nothing about accepting and loving my child just for who he is. Everything was about how to change my child. I felt overwhelmed. We became increasingly more stressed and negative because everything we looked into was so pessimistic. There was no encouragement to find joy in parenting or your child, to love them and to encourage him to love himself As Is. My son was, admittedly, hard to parent. His routines were carved into stone, meltdowns were incredible, self harming or lashing out at me was becoming a daily event because of all the extra stress happening in our family. My ex-husband worked away from home, only coming back once a month for a weekend. I kept getting advice that placed the blame solidly on my shoulders. My parenting style was the reason he ‘acted out’. The self doubt, the guilt, the enormity that ALL of this could potentially be because of ME weighed on my heart.
I am going to fast forward in time now. I decided to ignore Every. Single. Piece of ‘traditional parenting’ advice I was given.
Parenting a child that was neuro-diverse meant I had to be atypical in my parenting. It took a LOT of hard work, tears, laughter, patience and creativity.
If your child has recently had a diagnosis of Autism or is going through the process: Here are the words I need you to hear.
Seasons and Moments.
Our lives are divided into Seasons and Moments.
In the middle of a terrible heart-wrenching moment (diagnosis day – for example), you can breathe through knowing it won’t last long.
When you are struggling with a child’s behavior or something in your life …. it’s a season of Struggle.
Life is not static, things always change. Your child will change and the struggles will change, but if we work together, creating stronger families and communities, we can support each other through these moments and seasons.
Welcome to my blog. My family’s life can be messy (literally and figuratively). I’ll try to be Open about our family experiences and I hope that through reading about our struggles, our joys and just our everyday life, you will feel more confident in your journey!
One Red Zebra 