kids

"For three years, my husband gaslit me about our son's disability."

I’m someone who’s very maternal and loves children. When I was in high school I asked a friend how many kids she wanted. When she said she didn’t know if she wanted kids, I was dumbfounded. It was so different to my dreams. I told her I wanted 4 kids.

I ended up having 4 kids, but I also had 4 stepchildren: 2 stepchildren and 1 biological child from my first relationship, then 2 more stepchildren and 3 biological children from my 11-year marriage.

In fact, I was a stepmother at 22 before I had my first baby 5 years later.

I loved being a mum. Not that it was without challenges.

I had issues bonding with my stepson when his parents were going through custody issues, I had problems with breastfeeding my daughter because of my milk flow, I felt suffocated when my baby followed me everywhere when she learnt to crawl, I’ve had to deal with bullying at school and all sorts of teenage dramas.

But generally speaking, I’ve had it pretty easy.

I was able to breastfeed all my children, after a few hiccups. I co-slept with all my babies so I wasn’t terribly sleep deprived.

They all did/do reasonably well at school. People have told me I was a patient parent and complimented me on my parenting. My kids were all well-behaved and well-liked.

If I had a parenting problem, I just applied myself and got through it.

It wasn’t until my son, Harrison, was 18 months old that things began to unravel for me as a parent.

What is it like parenting a child with autism? Post continues below.

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Harrison is my 3rd biological child or my 7th child in total, if you count my stepchildren.

But for all my parenting experience, I wasn’t familiar with little boys.

I’d met my first 2 stepsons when they were 4 and 7 respectively and my husband’s son had been 6 when we met. So I’d never dealt with a boy baby or boy toddler before.

After having 2 girls first, I remember it taking me ages to get used to the boy bits in my sons nappy. Staring me in the face every time I changed him, they seemed so foreign to me.

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As a baby Harrison was a dream though. He fed well and slept well. He was happy and sociable. One of my best friends had a baby boy 6 weeks after I had Harrison and her baby was a nightmare. He had colic and wouldn’t let her put him down. If she did, he’d scream.

We’d meet at a playground with our toddler girls, who were the same age, and our baby boys. I’d lie Harrison on a mat and he’d lie there happily as my other children had, but my friend was unable to put her son down. I could see the exhaustion and despair on her face.

It made me feel very lucky to have such an easy baby.

That all changed when Harrison was 18 months old and I noticed some things that concerned me.

Up until then, he’d passed all his health checks and developmental milestones. He’d walked at 10 months, he was talking well.

I was a mum who liked to get out and about. Where I live there are lots of green spaces and lots of free activities for the kids. With my other children, storytime at the library was a weekly staple. But from 18 months, my son hated it.

He would not sit still and he’d run out the library as soon as the stories started. He wanted to play with the train tracks which were put away during storytime.

So he’d bolt out the automatic doors of the library, run to the Woolworths next door (within the same complex) and bite the head off a packet of Mentos before I could catch up with him.

I’d have to race after him and essentially wrestle him away to stop him.

I remember one day he did this while I was pregnant with my youngest child and wearing a button-up dress. I was retrieving him, while he struggled to get free, back to the library and his wiggling undid the top few of my buttons so that my maternity bra was on show for all to see.

I couldn’t stop and button it up because Harrison would escape again.

Another afternoon we went to a free Justine Clark Concert at our waterfront which has a stage and a big green lawn. It’s got a lagoon there and is surrounded by restaurants. Harrison was up the front dancing, then all of a sudden I couldn’t see him.

My heart was in my mouth! Where was he? We sent out a search party of family friends and found him playing on the lagoon beach with a bucket and shovel he had found.

Going out with him was hard. He’d have meltdowns, was defiant and would constantly run away. I hated people staring at me with my “out of control” son.

I stopped going out because he was so unpredictable and so I became isolated at home. Even going to friend’s places was unpleasant. All their kids were reasonably well-behaved, but Harrison wouldn’t listen.

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He’d touch things he wasn’t supposed to, he’d annoy the other kids, and I’d be constantly monitoring him so he didn’t hurt anyone else. I began to feel he wasn’t welcome on playdates because I couldn’t control him. They certainly weren’t relaxing for me.

We went to an indoor playground once and he threw a large plastic car at another’s child’s head. I was mortified and made him apologise.

The other mum was very chilled and understanding, thankfully. When I asked him why he’d done it, he said the other boy wouldn’t play with him.

Picking my daughter up from school became challenging because he would run away and meltdown and wouldn’t get back in the car. I hated all the negative attention I felt we were getting.

I felt embarrassed and desperate. I felt defeated.

Every day I’d tell my husband, “I’m really struggling. I think there’s something wrong”. And every day he’d say, “He’s fine. He’s just a boy. Boys are different, Just do xyz like I do, and it will work”.

Vanessa Cranfield learned her daughter had Down syndrome on the day she was born. Mia Freedman sits down to talk with her about parenting a child with a disability. Post continues below. 

The subtext of which was: “He behaves for me. You are the problem”.

I’d never parented a really young boy before so I thought maybe it was a boy thing, even though my gut instincts were telling me that something else was at play. My husband’s older son was a dream child so by default, he was a good boy-parent and I wasn’t. Harrison’s behaviour was worst at home and with me.

So I just tried harder to be a good parent to him. I had a parenting consultant come to my house. I did parenting courses such as “Circle of Security” and “Tuning into Kids”.

I went to parenting seminars at school, I read parenting books and listened to parenting podcasts, but nothing I did helped me with Harrison’s behaviour.

I started hating being at home with him.

I worked 3 days a week and the days I was at work I felt relaxed and happy. It was respite for me.

Monday mornings when all the other staff were bleary-eyed and grumbling about where the weekend had gone, I was dancing on air to be able to sit at my computer in peace and enjoy my coffee uninterrupted.

My youngest child was born when Harrison was 2 years and 2 months.

I developed postnatal depression, but when I suggested this to my husband he said: “You’re not depressed”.

Eventually, I begged my doctor for antidepressants even though she wanted me to try counselling first. “I don’t have time for counselling,” I told her.

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I was working part time, had 2 stepchildren and 4 biological children.

I was carrying the mental load for our family of 8 people and being gaslit daily (not that I realised it at the time).

I was miserable and desperate to feel better. I asked our family GP if she thought there was anything wrong with Harrison. She assured me, “He looks like a normal, healthy young boy to me”.

And of course my worried mama heart lapped it up. It’s what I wanted to hear, in a way.

You don’t really want to face up to your child having a lifelong disability. It eased my mind temporarily.

My family were all living interstate and I was isolating myself from friends because I was ashamed that I couldn’t manage Harrison’s behaviour. So there was no one to tell me, “I think you should take him to see someone”.

Then, one day my friend and I took our kids on a bus ride to the local shopping centre.

It was supposed to be an adventure. Harrison was acting up and I wanted to go home but we’d all come together and I was the one who knew the stop to get off on the way back. We got through the shopping centre visit (just) and caught the bus home.

When it was our stop, I pushed the bell and went to get up. Harrison gripped the poles on either side of the isle and starting screaming at the top of his lungs. I felt panicked, I didn’t know what to do. We had to get off but he wasn’t letting go.

I had to prize his fingers off the metal poles one by one and carry him off under one arm and my baby daughter in my other arm. I carried him all the way home screaming at the top of his lungs with people staring.

My friend was wide-eyed. “Maybe there is something going on with him,” she said. It was the first time anyone else had acknowledged there might be a problem.

"It was the first time anyone else had acknowledged there might be a problem." Image: Getty
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But of course when I relayed the story to my husband that night, he gaslit me again. I did nothing about it except drop deeper into my depression and despair and isolate myself further.

My mum-esteem was at an all-time low.

I asked for validation of my concerns at Harrison’s childcare, but they said he’s fine. No issues.

When he started preschool they had minor concerns about his ability to focus and thought he might do with an extra year of preschool. By the end of that year though, they said he was doing well socially and emotionally and because he loved routine so much, he’d be better off going on to full-time school.

Again I was overjoyed that he was coping and progressing and to be honest, the idea of not having him home with me during the week was a huge relief. I was starting to dread spending time with him because I couldn’t manage his behaviour and I didn’t know what to do.

Around August 2018 when my son was almost 5, I was again pleading with my husband to acknowledge that there was a problem. Suddenly, he blurted out: “I think Harrison has autism and I think I do too”.

It was shocking. It was scary. It knocked me on my butt. But suddenly I had something to hang my hat on.

Shortly after that I went to the GP and insisted. She said, “You are the mum. You know him best” and she gave me a referral to a paediatrician.

The public health channel for an autism diagnosis is vexingly slow.

As we waited to see a paediatrician, Christmas came and went, Harrison turned 5, he started full time school, my marriage deteriorated.

After his brief epiphany, my husband went back to gaslighting me. Again I doubted there was anything wrong, and there were so many beautiful moments with Harrison that I would think “I must be imagining it”.

Then he’d pull his sister's hair or be defiant or have a meltdown and I’d be glad we were working towards some answers.

In March 2019 we finally saw a paediatrician, who listened to my observations and concerns as a parent. She referred Harrison for an ADOS (an autism assessment) and again we waited.

The home environment was horrible at that time.

Shortly after we saw the paediatrician, I told my husband we were done. It wasn’t just the gaslighting. He had also developed a bad habit of yelling at everyone in the home. My teenage daughter and my teen stepdaughter were suffering particularly. My stepdaughter walked out and went to live with her mum.

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My daughter started going out of control and I was getting weekly phone calls from her school.

One day I had an epiphany of my own. I had to leave this man who never listened to me and yelled daily. It was affecting my daughter.

Unfortunately, I hadn’t been strong enough to do it for myself but I had to do it for my kids.

I moved out several months later when my accommodation became available and for the first time in years, I felt happy at home.

I was still struggling with my son’s behaviour, and it was extremely hard parenting him on my own but I felt positive.

In November 2019, he was assessed and in December, Harrison was diagnosed with autism spectrum disorder (ASD) level 2. There are 3 levels of ASD based on the support required. Level 3 requires significant support and, for an adult at that level, independent living is very unlikely. Level 1 requires the least support and level 2 is in the middle.

The diagnosis was a bittersweet vindication that my instincts were right all along.

After the diagnosis I felt livid with my husband, soon to be ex. I had struggled for years with a son with a fairly severe disability and he was gaslighting me about it most of that time.

I’m now seeing a therapist to deal with my residual depression and the very deep anger, bitterness and betrayal I feel towards my ex.

I’m dealing with the guilt and despair I feel over not trusting my gut and getting my son diagnosed earlier.

But mostly I’m trying to navigate our new reality and get my son early intervention so he can have the best quality of life possible.

We were recently approved National Disability Insurance Scheme (NDIS) funding for 80 hours of therapy for my son over the next 12 months. He’s likely to need therapy and /or assistance his entire life. It’s a busy time ahead with weekly visits to health professionals.

I still see my ex a lot as we co-parent our 3 children together. I can’t forgive him yet for what he did to me and my son. That will take time.

Away from the continuous gaslighting of my reality, I’m learning to trust my instincts. I’m actually realising that they are pretty accurate.

Often my first impression is right and I sense things that others miss. In fact, my gut instincts might be my superpower and I hope that I never allow anyone to make doubt them again.

The author of this story is known to Mamamia but has chosen to remain anonymous for privacy reasons. The feature image used is a stock photo from Getty. 

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