Our First Steps on a Journey that Continues Today

People often ask me if I knew my son had autism when he was an infant. The answer is no.

There were, however, all these little clues that he was different from his brother.

Little to no eye contact, not responding to his name, and not smiling when myself or someone else would smile at him. But, they were all just out of my awareness and the complete picture of what we would face in the coming months was not yet clear.

I started to question things near Finn’s first birthday.  He was not walking and not talking.

I remember having a conversation with my husband’s sister asking her how old her son was when he started to talk.

My nephew is the youngest of two children in his family.  She shared that it took him longer than her daughter to start speaking. That conversation reassured me.

Then, Finn had his first seizure in March of 2013.  He had just turned 15 months and we spent a month in and out of the hospital working to get his epilepsy under control.  He was still not walking and barely feeding himself.

He had just started to say ‘mama’ a few days before the seizures started.

During the third hospital stay, Finn’s neurologist started to gently grow our awareness. Finn was delayed and different from other kids his age.  Upon his orders, we started Speech Therapy, Occupational Therapy and Physical Therapy.

We began developmental testing through Help Me Grow.

These were all the first steps in our autism journey.  A small piece of me during that time started whispering that an autism diagnosis was a possibility.  But, I would quickly brush it aside blissful in my busyness. I had appointments to keep and Finn needed to get signed up for special needs preschool.

I remember how in the beginning, every professional person we met, was all so hopeful and helpful.  I felt like without saying it, they all believed, as I did, that Finn would be OK with time and therapy.

Finn has amazing blue eyes so it is easy to feel hopeful and smile at him even though he would not return the smile at the time.

We started Physical Therapy in May and by August 2013 his Therapist had him walking and she felt that he had made enough progress to ‘graduate!’

In that moment, I thought to myself, we are going to be OK.  Finn is a little delayed and that’s OK.  He has plenty of time to catch up.

I had no reason to think that he wouldn’t progress in his other therapies the way he did physically.  I prayed that by the end of the year he would speak.

In December of 2013, we had his first IEP meeting at preschool and it was then that I began to get a mental hold of the journey we were on.

His teachers reviewed his progress and regularly pointed out how he struggled socially, how he continued to have difficulty with eye contact, imitation, and not wanting too or couldn’t make sounds in speech therapy.

An intense sadness gripped my heart and stomach when I said to his teachers out loud, ‘This is going to be a long process isn’t it?’

No one spoke.

They just nodded their heads softly in acknowledgement and moved on to the next item on the agenda. I held back tears and carried on.

The rest of the realization would come on the day we had Finn tested for autism in March of 2014.  The four hour long appointment was scheduled almost a year to the day after his first seizure.  I remember driving to the appointment hopeful and at peace with whatever came out of the meeting.

I thought to myself that he would likely be diagnosed with autism but it wouldn’t be that bad.  The doctors, psychologist and other therapists would comment about how much he had progressed and how hard we had worked over the last year to help Finn develop skills like eye contact.

In one of the visiting rooms, we sat and waited while Finn was tested.

There, the final pieces of my awareness clicked into place when the developmental doctor asked if Finn was a ‘quiet child.’  I said yes. Way more than my first born had been.

And she replied, ‘Maybe he is a little too laid back and a little too quiet.’

It was in that moment things came into focus and the room became very bright and sharp. I knew before they delivered the diagnosis.  I knew before they said ‘severe autism‘ and ‘at great risk for mental retardation.’

I knew Finn had autism. I knew he was different. I knew we had taken our first steps on a journey that continues today.

Five years in, I understand that grief is one side of the “ah-ha” moments.

I grieve milestones that Finn has missed. I grieve for the sound of his voice.

The flip side is joy.  I can experience the joy of watching Finn figure out everyday challenges.

I am by his side, holding his still chubby hand the entire way.  I get to be his greatest cheerleader and share in the excitement of his accomplishments.

And every little victory he has is celebrated.  I can’t wait to see what his future holds.

He’s gonna kill them all with that smile.

Written by, Terra Smith

Terra Smith is a full time autism mom and part time mental health therapist.  She is just beginning her journey with expressing herself through writing.  Her son Finn is an amazing younger brother and diagnosed with epilepsy and non-verbal autism. You can follower her on Instagram at https://www.instagram.com/terrastarr77/.

Photo Credit: Sara Sell Photography

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  • SHEILA LEPOTAKIS

    February 28, 2018 at 7:42 pm
    Reply

    Even though Stephens Autism is not as difficult as her sons, she spoke for me and others who had to say, Ok..it's not ok..(the wispers, […] Read MoreEven though Stephens Autism is not as difficult as her sons, she spoke for me and others who had to say, Ok..it's not ok..(the wispers, strange looks, we have all and still go through...Ok...he won't be able to care for himself or ever be alone, he will always need help with seizure meds, housing, food, etc. We all worry about love, happiness, safety, when we are gone if he out lives us..etc...we all ponders these thoughts. He is a big part of my life and protecting, loving, caring, wanting the best for our child never ends. All our kids. I cried watching this video because I can understand first hand the heartache and realization of what she is going through and will continue to go through. Those early days when moms had play dates with kids and asked us out but I could not go because of his inability to cope with the outside world at that time...I felt alone a lot dealing with him. The world did not always have a loving embrace in those early years when you had a child with Autism. However, I am proud to say my son had grown into a fine young man who tolerates baby cries a lot better, makes his own decisions on what he wants to eat, why he likes to do...he plays piano,( played and sang in front of 325 people at the Crowne Plaza 5 years ago ad go a standing ovation. does modified Martial Arts, Special Olympics,works 5 days a week from 9:00 to 3:00, went to the prom twice..things I never thought possible.. etc..he has grown and I could not be more proud of the young man he is turnig out to be..He hopefully will continue to thrive and never be alone. I hope this woman knows those possibilities are possible for her sone as well. Hard work and dedication..does work..To her I say...Keep going..he and you will make it.From one mom to another..Much Love and Hugs.( always push the things he is interestsed in and excels in..it works? (My son will be 30 in july) Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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