What’s it really like… being a mum to a child with autism

A few weeks ago I wrote about what life was really like being a parent of three children. The article got a great response, both from fellow parents of three sharing details of their own lives, as well as those who were intrigued to have an insight. It’s inspired me to launch a new series on Cardiff Mummy Says looking at what life is really like for different kinds of families.

Last week, the series kicked off with Alana, who blogs at Baby Holiday, talking about what it’s like to share parental leave with her husband, cutting short her maternity leave while he looks after the children for three months. You can read her post here and keep up to date with the What’s It Really Like…? series here.

This week, Jo of First Time Valley Mam, talks about life with her four-year-old son Z, who has autism.

Tell us about your family

My husband and I have one child, Z, he’s 4. We live in the South Wales Valleys and I work part time.

When did you realise Z was showing autistic traits and how long did it take before you got a diagnosis?

I knew from a young age. He just wasn’t like other children his age. He never liked to be cwtched to sleep. The Olly Murs song Dance With Me Tonight would be played on repeat and loud; he would fall straight to sleep and wake if it stopped. He could do a 10-piece shape puzzle at 6-7 months and a five-piece shape sorter at eight months. The health visitor took me seriously at 22 months, we had a diagnosis at two years 10 months. He is now four, pre-verbal, still in nappies and sees no danger. I still have a baby, but he looks like your typical little boy.

What other autistic traits does he have?

Food is a big sensory issue. He’ll only eat wet dry crunchy foods. We’ve worked for over a year and we’ve added yoghurt and jelly. All his other foods are the same beige colour.

We have lots of lines, we have routines, he flaps and spins. When we’re out, we get the judgemental stares when I know he needs that sensory input and he’ll need to be dragged around the sand or span around. Often it looks bad – “oh, look at the way she’s treating that kid” – but he loves it. It’s safer for me to drag him across the sand where he has the feel of sand in his fingers, wind blowing his hair and things passing him by at speed than, say, he try and jump off a wall to get the same sort of sensory impact.

He has a photographic memory. He won’t forget, he’ll recognise the roads and know where we are going. He’s very clever, he’s also very loving. He may not look us in the eye, another trait, and he doesn’t speak, but I’m hoping one day we’ll have it. I love the flaps, the spins and the routines. They make him who he is.

What’s an average day like for you?

On an average day we get up at 7am. This is normally after going to bed around 10pm, waking anytime from 10.20pm to 11pm. If we pass this time we see 2am, 3am, we’re then awake until 4am-4.45am. As my one job is a bus driver I take Z to school as part of my job and I’m back home around 9.30am. I start my second job at 1pm and then go straight to my driving job and home by 4pm. We do things on different days – soft play on a Tuesday and kids fit on a Wednesday.

What causes the night wakings?

People say it’s to do with the body’s lack of melatonin, I don’t think people actually really know for sure. I just think he doesn’t need as much sleep as you and I. I do see that after these phases of no sleep he learns something, whether that’s a new sound or willing to try a new food. Unless he’s ill, then we see some sort of small regression. Dealing with them just happens. It’s hard being awake from 2am until 5.45am and then getting up at 7am for work. I keep myself going by online shopping at 3am and telling myself it’s a phase. It usually lasts around three weeks and we’ll get a few days of sleep before the next three-week phase starts.

What kinds of difficulties do you face when out and about?

As Z is still in nappies being out and about can prove difficult. Most places have those fold down baby changing units. They are aimed at babies. Z is four; he’s too tall and heavy to go on one of these. That means we have to change him on the floor. He also hates the sound of hand dryers so we have to use the disabled bay. This is bigger so I try and lay out mats on the floor. I still hate putting him on a cold stinking floor. I’ve had to sit on the floor, as I refuse to put him on the floor, and change him on my lap.

New places can be tricky. If it’s loud or too busy, he’ll struggle. If he’s been before he’ll be a little hesitant but we can get him in. Sometimes he’ll be okay, and will go in and this takes me by surprise. Other days he’ll throw himself on the floor. For example, last weekend we stopped by Asda. He’s always gone to Asda, not a problem. This time, as we walked in, there were lots of flowers, smells and colours that are not normally there. It was a little busier being Valentine’s Day weekend, then as we walked in the tannoy went off. Z dropped to the floor screaming. I had to leave him for a minute. There’s no point attempting to pick him up; he’ll injure himself by trying to get away. When it was time to pick him up, I put him in the trolley and took him away from all this new sensory overload, and he calms down.

Are strangers understanding of Z having autism?

Some people just look and look sympathetic ‘oh look, a child having a paddy’. Some look and judge, when I don’t pick him up, or if I try and calm him by applying pressure which I’ve been known to do! If we’re in a supermarket and he’s struggling I’ll give him a drink or crisps or even Jaffa Cakes. I get looks then too as they presume I’m spoiling him. The worst was recently at Barry Island. We were in the amusement arcade, he heard the Peppa Pig car go off and ran into the amusement arcade screaming. I had to get him out of there before another ride set him off. When he’s heading for a meltdown more sensory factors can make it worse so I carried him out kicking and screaming upside down. A family stopped and stared. As we got to the front I put him down and pinned him to the floor, they were looking at me, talking. When he was a little calmer I put him in my back carrier and he calmed down. I looked at them whilst saying to my mate “sensory overload, he can’t cope, the deep pressure of being stuck to me will calm him down enough to get us to the sand. Sometimes autism sucks.” And they turned away.

What are the best/most rewarding parts of parenting a child who has autism?

The most rewarding parts are when he just stops what he’s doing and looks straight in my eyes and smiles. Or randomly comes with a huge grin and gives a big hug. When he tries a new food or says a new word. They may not stay but it’s progress even if just for the day or week.

What are the biggest misconceptions people have about children with autism?

That they have a special skill. They are clever at something, and that when they learn to talk it will make everything all better and autism will be gone.

What would you most like people to know about having a child with autism?

It really is much harder than we honestly say. It’s just something you get used to; that you have to do. He’s my child. I have to look after him. I have to be his person just as I had to when he was a few months old. Just because he can walk it doesn’t mean he can always walk. Sensory issues are real. Imagine walking and a motorbike passes. We all jump, but for Z this is louder. He can most probably feel the floor vibrate as it passes, he’s either going to run or throw himself to the floor. Just as you or I would do if we heard gun fire.

Is there anyone or anything that helps make your life easier?

My parents. They have Z for me on a Friday night. This allows me to either meet a mate, catch up on much needed sleep, or even have a date night with the hubby.

Also the National Autistic Society Merthyr have been great – although now he’s in school, things are mainly done through school, so I’ve met more parents in the same boat as myself.

What advice would you give other parents in the same situation?

“Yet!” Always add yet to what your child can’t do. “My child can’t talk… yet.” Also look to what your child can do and not what they can’t. You’ll often find they can do far more than you give them credit for.

Read more about Jo and Z’s life on her blog First Time Valley Mam, or follow her on Facebook, Twitter and Instagram.

Keep up to date with the What’s It Really Like…? series here.