I’ll Never Give Up On Him

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I remember attending a speech therapy play session at the start of our autism journey.

My son Freddie was 3 years old. He’d officially been diagnosed just over 6 months previous to this.

I was excited and nervous. The autism world was all still fairly new.

I didn’t really understand what or how severe autism was going to affect Freddie. I’d never heard of low functioning autism, and googling severe autism left me feeling hopeless.

I reminded myself that Freddie was still so young.

I was in denial. I thought he was going to catch up and reach milestones. We just needed early intervention to help us.

I thought we’d attend these sessions and he’d start talking.

Everyone talks don’t they?

I’ve never heard of someone being nonverbal forever. I couldn’t imagine that, it was too heartbreaking to think about.

If he started talking everything would be okay.

He needed to speak. I needed him to speak. Then life wouldn’t be so difficult.

Once he could talk and understand us we could toilet train him. We could manage his behaviours easier.

We’d have him ready to start a mainstream school.

We still had time, just over a year and a half. We were doing all of the right things, trying different therapies.

We were going to be okay.

Session 1

Two speech therapists, three other children with their parents, me and Freddie. The children were all the same age.

All of the other children could follow simple instructions. They sat nicely with their parents, and were joining in with the circle time activity.

I was trying to chase Freddie around the room, stopping him from biting door handles, licking the floor, throwing objects, running up and down the room, and spinning around in circles.

“Why don’t you just tell him No”, said one of the speech therapists. Clearly she had no idea who Freddie was!

He didn’t understand the word no. He didn’t understand simple instructions. If only it was that easy!

Nobody, not even professionals seemed to understand Freddie’s diagnosis or needs.

All of the parents and children were watching us. Some with sympathy and others with disapproval.

The other speech therapist finally told me to leave him to it and join their circle. I could have cried, I wanted to take Freddie out of the situation.

For half an hour I sat watching the other children interact, making sounds, giving eye contact, and even saying some words, whilst Freddie was humming and grunting really loudly, flapping his hands, looking out of the corner of his eyes, and running along a book shelf continuously.

I hated it. Freddie clearly hated it. We didn’t even fit in here. How was this helping us?

Sessions 2, 3 and 4

We attended another three sessions and they all went the same way. Freddie wasn’t interested, and I had to sit and& watch three other children learn how to make new sounds and say some new words. I was happy for them and the parents, but I felt sad for Freddie and myself.

It seemed like nothing was ever going to work for us.

He wasn’t like the other children. It was obvious. Was he always going to be the one who stood out and wouldn’t participate? Would anyone ever understand him?

After feeling helpless and heartbroken I decided I wouldn’t put us in that situation again. He clearly wasn’t ready and he wasn’t comfortable around strangers or in new environments.

I asked speech therapy to visit us at home instead, which ended up the same way.

Freddie hated it. He cried and hid under the table. The speech therapist tried picture exchange but Freddie just couldn’t understand it and didn’t want to take part. She left after 20 minutes and said there wasn’t anything else she could do.

The worst feeling for me is feeling like a failure. I felt like I was letting Freddie down.

I didn’t know how to help him. If speech therapists couldn’t help my son and gave up on him, what hope did we have.

From that moment I stopped trying picture exchange. I let go of the idea of Freddie speaking and I concentrated on interaction and eye contact.

Anything else was pointless at this time.

I found ways to interact with Freddie and get his attention through play. Een if it was just for a minute, it was better than nothing.

We used bubbles, balloons, and juggling balls. Anything he was interested in I used as a tool to get him to look at me. It wasn’t easy, it’s still difficult now.

Sometimes you have to stop certain therapies and trust your instincts! You know your child better than anyone.

If you feel something isn’t working, or if it’s making you and your child uncomfortable, it’s okay to say no and stop.

Try and find something else that works for you.

I didn’t give up on Freddie, but I stopped forcing him to try certain things when he just wasn’t ready.

He wasn’t ready to use picture exchange and he wasn’t ready to speak!

He needed me to understand his nonverbal communication. He needed to trust me completely to let me in, and then he’d be able to show me what he was capable of.

My child isn’t like the rest and I think most days I’m okay with that.

It’s not always easy, but he’s mostly happy and learning at his own pace.

I’ve had to let go of the idea of him speaking and having a conversation for now.

Instead I try to focus on what he’s achieving today, because 3 years ago I lost all hope of understanding Freddie and him understanding the world.

But he’s proved me wrong in many ways.

I always say that we have hope for the future but remain realistic.

The future is scary and I hate the unknown, but I will always do what I think is right for Freddie.

I’ll never give up on him, and I’ll always fight for his needs to be met.

Written by, Danielle Smith

Hi, I’m Danielle. I’m from the UK, and have a blog following my 5 year old sons journey with severe, non verbal autism. Freddie was diagnosed at 2 and a half years old. You can follow our story at Another View Of Autism & Our Journey So Far.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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