Year One Living with an Autism Diagnosis

It’s been a year since our son’s PDD-NOS diagnosis. PDD-NOS is the easier-to-remember abbreviation for Pervasive Developmental Disorder Not Otherwise Specified. It’s also called Atypical Autism (even easier to remember). Since his diagnosis at age 9 (read our story about his diagnosis), things have changed. A lot.

The Exhausting Part

It was at the end of 2nd grade when we got his diagnosis. The school year was almost over and it was a busy time for our family of five. Normal operations carried on while we tried to learn as much as we could. The kids were ready for summer. We were ready for a  break from the pressures of school, the emotional reactions to early mornings conflict over breakfast and clothes, and after-school homework battles.

In the craziness of our lives, we were physically, emotionally, and mentally exhausted. We felt every decision we made from that point forward would have life-long consequences. There were so many decisions to make. We needed to cut ourselves some slack and relax. Summer was the perfect excuse to just be a family. So we did.

Going Drug-free

Raising kids isn’t for the faint of heart. Being a parent of a kid with autism has moments of joy and heartbreak. Before his autism diagnosis, we wanted to understand why school and social interactions were so difficult. We went through a lot on the journey to understanding.

Early on, a social worker noted that a facial tic may be a symptom of a brain tumor or absence seizures (short little brain blips that last just a few seconds). That wasn’t a fun day, but was a piece of cake compared to the EEG experience and tense moments waiting for the results.

No tumors. No seizures. Whew.

After those tests, an initial diagnosis was Attention Deficient Disorder (ADD). Easy fix: a prescription for Vyvance, a daily use stimulant medication to treat ADHD and ADD. This should help with classroom focus and concentration. For over a year, we tried different doses to find the right balance.

None did the trick.

To make matters worse, the medication changed him. The calm, talkative, and sweet kid was withdrawn and often angry. He despised taking it and fought us daily. And the side effects were real. He didn’t sleep well, was angry, couldn’t control his emotions, and didn’t eat well. He lost weight. He didn’t talk much. He had cavities at each dentist visit. It was bad.

Did it help with focus and concentration? Sorta. It did help him sit still in the classroom. But he wasn’t involved in normal classroom conversation and didn’t make friends. Social situations were painfully awkward for him. He was beyond shy. The worst part of his day was lunchtime. His anxiety was off the charts during lunch. The chaos and noise of the lunchroom was deafening to him. He sat alone, nibbling his food counting the seconds until it was over.

We worked with the school to give him some relief from his struggles. Some days he ate in his classroom with a smaller group of helpful friends. He had one-on-one time with a special education staff. His second grade teacher was phenomenal. He is so loved by so many.

And my heart was breaking. Crying myself to sleep was a regular thing. His social, academic, and emotional struggles were too much to handle. Our son, who we loved with everything we had, was experiencing life in a way we had never intended. He was unhappy. I was miserable. By the end of the school year, we’d had enough.

We called the pediatrician and took him off his medication for the summer. Turns out, it’s the best decision we’ve made so far.

Our summer was fantastic. The real Matthew emerged again. He gained weight, slept better, started talking more, and hanging out with some friends. But without his medication, obsessions took over. He was obsessed with minivans. Not exactly a typical 9-year-old interest for sure. He committed to knowing as much as he could about minivans. He watched YouTube videos, studied the differences between models, manufacturers, and years. He had the facts down cold.

Even now, he can identify the year, make, and model of most minivans on the road. Even going 65 miles-per-hour. He started reading, learning, talking, laughing, and being him.

Third Grade Happened

School got underway with a lot of change. Third grade means a new classroom building. A newer building with wider hallways, more space in general, and a locker next to a large window and door. We were nervous. How would this go without his medication? We knew we were taking a risk with his academic success by putting him back in a classroom without the focus and concentration help of his medication. Concentrating on work was hard and his focus certainly took a hit.

We prioritized his happiness and healthy over his academics. We can sleep at night with this decision. Our school supports our decision and we’re happy with it. Third grade was successful in our view.

One day, he came home from school wearing a wedding band. Nothing weird about that. We laughed and asked a few questions about my new daughter-in-law.

Me: “What’s her name?”

Matthew: “Well, she goes by Mrs. Boyce now.”

Me: “ … “

The pretend recess wedding was a pivotal moment. He has friends, a social life, and relationships. The simple playground role play was such a normal things for kids to do. I was overwhelmed with what it meant. The wedding didn’t last long, but it was still a red-letter day.

Then Came the Rainbow Loom

If you are breathing and know a kid between the age of 6 and 12, you know what I’m talking about when I bring up rainbow looms. The concept is to use tiny rubber bands to make bracelets, keychains, other other crafty things.

Matthew’s into it. Big time. He’s made hundreds of bracelets, keychains, charms, necklaces, and other knick knacks. He loves making them for our family and friends. He takes custom orders and never forgets your preferences. Rainbow Looms are fantastic. It helps him work on focus, concentration, repetition, dexterity, and gross motor skills. There are tiny rubber bands scattered throughout our house. I love them all, including the mess.

What’s Next

Here we are, at the beginning of another school year. We faced some big challenges, experienced a bit of heartbreak, learned a lot, and are still chugging away. The upcoming year are sure to bring more unanticipated events and complications. There will be ups and downs. We’re ready for it. God’s been lighting our path and we know that will continue. We’ll go where He leads us, and lean on his grace to love this life we’re given.

Until next year …


About Lori Boyce

I’m Lori Boyce. I'm a writer, problem solver, coffee drinker, grammar geek, friend. I read a lot and love words.

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