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Could You Handle Life with 3 Autistic Sons?

An honest & moving interview with an amazing mother who does

 

Sarah and I were taking our 18-month-old toddlers around the local animal farm on a warm spring day. My little blond son chatted away excitedly, fed the animals and urged me to “come look”; Sarah’s boy, Alex, sat placidly in his pushchair and spent the time looking at his hands. He ignored the animals and the crowds of people and didn’t make a sound.

 

At one point in this difficult afternoon, Sarah’s eyes filled with tears. “Why won’t he even look at the animals? What’s wrong with him?” she asked me.

 

I was silent. How could I tell her I suspected he was autistic? When it came to the crunch, I couldn’t give her such devastating news.

 

Reliving this incident with her recently, I had to confess to being relieved when she got the diagnosis. We were talking in the living room of her 60s built semi, enjoying the sun that was streaming into the new airy extension and relaxing with cups of tea. She and her husband Ian, an electronic engineer, are warm, funny and devoted to one another.

 

In the following twelve years, they have gone on to have two more sons, both also autistic, but it's Alex who dominates their lives. He rarely speaks and his everyday behaviour is very challenging, making family life virtually impossible at times. 

 

Sarah had her suspicions about Alex’s autism before her second son was born but didn’t address them until the Health Visitor came to see Kyle, the new arrival. She was in denial about his difficulties, even though she’d noticed that he was very late meeting his milestones and he wasn’t like other children.

 

“I kind of knew something was wrong,” she said, looking slightly embarrassed, “but I just didn’t want to believe it”.

 

When Kyle was tiny, an official leaflet came through the door, describing all the things a two-year-old should be able to do. Alex couldn’t do any of them. Sarah mentioned this to the Health Visitor and Alex was quickly referred for an assessment. To no-one’s surprise, he was diagnosed with profound autism when he was two and a half.

 

It took Sarah and Ian a long time to realise Kyle was autistic because he was so much more advanced than his big brother. He walked at the right age and started talking when he should have done. Yes, he had funny mannerisms but Sarah thought he was “just a bit quirky”. However, his pre-school asked for him to be assessed because he didn’t interact with the other children.

 

In the meantime, Sarah became pregnant again. As Alex utterly ignored Kyle, his parents wanted a sibling for him to play with and hoped for a normal child. Fate however, decided to give them a third autistic son: Ethan, who is now nine.

 

Despite their diagnoses, Sarah and Ian didn’t get much help and struggled on by themselves. But it all became too much five years ago when Alex was eight and his behaviour spiralled out of control.

 

“He used to do a lot of self-harming, like smacking his head on the floor repeatedly because he was frustrated,” Sarah told me. “We’d try to go out as a family and it would be completely ruined because Alex would have a big meltdown.” She went to her social worker and pleaded for some help.

 

It began with Alex visiting a special child minder for afternoon tea after school once a week, and progressed to regular overnight respite in a local centre. When he was in Year 6, the special school he was at told his parents they couldn’t meet his needs anymore and he would have to go somewhere else. He is now a weekly boarder at Prior's Court (a highly specialised school for autistic children), and only sees his family at weekends and during the school holidays.

 

Sarah says Social Services have been a “godsend” to her and believes you shouldn’t be afraid to ask for help. Not all parents in her situation are of the same opinion though.

“They don’t want them sticking their noses in or interfering”, she told me when I looked at her in surprise. “Some of my friends have had bad experiences and that then puts other friends off.”

Sarah and Ian found they had to tolerate intrusive questions about their lives such as: “Do you ever smack your child?” We joke that very few parents we know would answer that question honestly.

Although life has become easier, weekends are still a challenge and Sarah is fighting to regain some respite for her and Ian, which was cancelled when Alex started boarding school. When all three boys are at home it’s manic. Alex misbehaves the minute you stop paying him attention, like pinching Ian’s legs or putting on the gas; Ethan obsesses over little things like certain lights being on and expresses his displeasure with a high pitched shriek, and Kyle likes rocking backwards and forwards.

The boys are so difficult together, they can’t do things as a family that most of us take for granted, such as go out for a coffee or visit friends. Neither parent can manage all three alone, so nights out are restricted to weeknights when Alex is away and someone can babysit his brothers. Also, the difficulties of juggling school holidays, and the prohibitive cost of specialised childcare, make it impossible for Sarah to go out to work.

It’s been hard for her to accept she will be a carer for the rest of her life. When Alex was diagnosed she still thought he might suddenly blossom and life would turn out ok. It wasn’t until she reached her lowest point that she realised just how difficult her future was going to be and that she would be “in this role forever.”

Sarah is strong and capable and enjoys life when she has the opportunity to do so. She and Ian love their boys despite the many challenges and they want them to have exciting experiences and live life to the full. Her Facebook feed is full of photos of the boys enjoying theme parks and trying out different activities such as ice skating, trampolining and swimming.

Autism is never that far away, however. Returning home, I text to thank her for her time and she replies by telling me that Alex has just destroyed the living room curtains. For her it is “just a day in the life of autism”. 

 

Image credit: (c) Sarah c/o Becky Killoran

Becky Killoran

About the Writer

Becky was a TEFL teacher for many years, including two spent in Japan. A keen reader, she is also passionate about music and is an enthusiastic member of her local choir, Rock Chorus. She lives with her family in Milton Keynes.

 

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