Our Autism Journey With Bethesda

Hello! My name is Tricia Sauve,

I’ll start with getting to a diagnosis.

This involved my gut instinct that something was not exactly typical about my daughter Ellie’s development.

We had been seeing several paraprofessional interventionists (speech, physio, OT) and various specialists. I knew it was Autism Spectrum Disorder (ASD) when Ellie was just 13 months old, but it was unofficial.

The day of the official diagnosis was almost a year later, at 23 months, and I was fully prepared to hear about Autism. My husband Marc, on the other hand, was not ready to listen to our little girl living with moderate to severe Autism.

I took that diagnosis like a champ, and my husband did not. He was struggling and spent three days on the couch grieving for our child and the loss of what we thought her future would look like. He was filled with all the nevers and all the won’ts, and in his mind, it was grim.

I had to remind him that ASD is not a death sentence and that no one plans for Autism, so it’s okay to feel unprepared. This was our reality; together, we would find a way forward. So we vowed to ensure we would help her be the best version of herself and follow her lead on everything.

I am a lot like Lisa Simpson, so like a crazed person, I scoured the internet for information, bought books and printed off all kinds of educational games and sensory activities. I was ready.

In retrospect, I can see that I burned myself out before I even started. I tried too much too soon, and my child continued to ignore our existence, just like she had since she was 13 months old.

We needed help. We were overwhelmed and felt very alone on this journey.

Our families weren’t much help, and spent the first two years of Ellie’s life saying I was making a big deal of nothing. I was a hysterical woman looking for problems and a lousy mom looking for attention. My husband’s family kept their distance because they didn’t understand her. From what I hear, countless other families with a child on the Autism spectrum have experienced everything we’ve gone through, including grief and alienation from friends and family.

We weren’t alone!

So we took the first step towards helping our daughter, and it involved assessments from Bethesda and then waiting for them to have space to start Intensive Behavioural Intervention (IBI) therapy. We continued seeing all the paraprofessionals until we got the call from Bethesda telling us they were ready for Ellie.

I didn’t think anyone would be prepared for her.

That child was wild! She couldn’t sit still, couldn’t focus and couldn’t speak. Her behaviours leaned towards the extreme, and she was a runner!

How would they handle her? Would she be safe? Would they be kind? Comfort her as I do?

That first day I gave the instructor therapist a rundown of Ellie’s needs and behaviours and warned her to wear sneakers instead of cute flats. She said not to worry and that she’s been in the job for a long time and her flats would be fine. Her bright white sneakers made me giggle the next day and every day after! Ha!

The waiting room was filled with running, rolling, and shouting kids amidst the glow of tablets and phones. All of us, parents and caregivers, were walking similar paths, chatting amongst ourselves. I found my people!

Over time we saw Ellie fully embrace going for therapy at Bethesda, her interventionists loved her, and she loved them. There were a few behavioural bumps with steps forward and steps back, but the progressions were always greater!

Bethesda offered us seminars to understand better how to navigate ASD services, government benefits, understanding Ellie’s therapy, how to implement Applied Behaviour Analysis (ABA) practices in the home, meetings with the school so we would all be united and the best by far was the Triple P Parenting class for exceptional children! Bethesda made it so easy for us to learn and grow as parents.

When my Ellie was reassessed due to extreme behaviours, the Bethesda staff helped get us to see a clinical child psychologist for help. ASD often comes with what they call comorbidities like ADHD, ODD, anxiety, depression etc.

Not all people on the spectrum experience this, but my Ellie needed help with extreme ADHD and ODD. Medications with modified therapies and strategies were the best course of action. My husband and I were nervous about whether we were doing the wrong thing. We met with our pediatrician, Bethesda staffers, the psychologist, my husband and myself, and we all concurred that it was the best choice for her.

It was a game-changer for us. Ellie started speaking about a month after she began her medications, engaging with us meaningfully, and had more remarkable strides at school and therapy.

In kindergarten, Ellie once got lost in a sensory experience involving a giant mud puddle in the schoolyard. She stripped naked and rolled in the mud like a piggy. I was called to the school because no one could convince her to leave. It was hard not to laugh, but I had the skills and got it done.

This was where the Triple P Parenting Class had come in so handy.

I had more strategies to parent her, explain the consequences and help her stay safe. It mattered to us. We weren’t alone and had a whole team behind us!

My daughter has grown leaps and bounds and is miles away from the little hurricane she once was. Today, Ellie has genuine friends; she can communicate, listen, and follow instructions, and she is ridiculously funny and delightfully quirky.

I thank Bethesda for helping us get our daughter to be the best version of herself, staying connected to us, and so much more.

As for us, we know that our journey is far from over. There will be ups and downs and some surprises as she grows to adulthood, but we are comforted knowing Bethesda will guide us.

Thank you so much for taking the time to read about our Autism journey with Bethesda.

Yours,

Tricia

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