Health and wellness touch each of us differently. This is one person’s story.
Let’s face it: Raising any child can feel like a minefield.
Usually, parents can turn to family and friends for advice and reassurance, knowing that they’ve probably encountered a similar issue and will have some words of wisdom — or gin and cheese at the very least! This type of support works well when your child is neurotypical.
But when your child is more unique than most, where do you turn then? Who helps when universal parenting advice just doesn’t work for your kid?
For this, and many other reasons, being the parent of a child with autism can feel pretty lonely at times.
The fears that you have as an autism parent are so different from the typical worries of other parents.
I know because I am both parents.
My twins were born at 32 weeks. Along with their premature arrival came a host of questions and concerns.
I was told that one of my boys, Harry, had a rare craniofacial condition called Goldenhar syndrome, which means that half of his face had never developed. Having a son with a special condition plunged me into a world of guilt and grief.
Then, when Harry was two years old, he was also diagnosed with autism. My other son and Harry’s twin, Oliver, does not have autism.
So I know the triumphs, challenges, and fears of raising both a neurotypical child and an extraordinary child.
For Oliver, I worry about comforting him through his inevitable heartbreaks. I hope that I am able to support him through the pressures of exams, job hunts, and friendships.
My friends understand these worries because they share most of them. We can chat about our experiences over coffee and laugh off our concerns for now.
My fears for Harry are very different.
I don’t share them as readily, partly because my friends don’t understand — despite their best attempts to — and partly because voicing my deepest fears gives them life, and some days I’m just not up to fighting them off.
While I know my fears for Oliver will find their own resolution, I don’t have the same peace of mind for Harry.
To quell my worries, I focus on the love I have for Harry and the joy he’s brought to my world, and not just the challenges.
Still, I want other autism parents to know they aren’t alone. Here are some of my worries for Harry that many autism parents will understand.
1. Am I doing enough for him?
I am constantly striving to find the balance between helping Harry and promoting his independence.
I have given up my teaching career to be more available for his appointments and operations.
I fight to get him access to the services he deserves.
I take him out for the day even when I know he may have a meltdown on unfamiliar territory, because I want him to experience life, explore the world around him, and make memories.
But there is a niggling voice that says there is more I should be doing. That there are other things that he deserves that I’m not providing.
I would do absolutely anything to ensure Harry lives a full and happy life as much as possible. And yet some days I still feel like I am letting him down, like I am not enough.
On those days I try to remind myself that all parents, whether they’re raising extraordinary children or not, need to make peace with being perfectly imperfect.
All I can do is my best, and I have to trust that Harry will be happy with my proactive efforts to help him live the richest life possible, too.
2. How will his communication skills develop?
Although he’s technically nonverbal, Harry does know quite a few words and uses them well, but he’s a long way from holding a conversation.
He responds to options given to him, and a lot of his speech is simply an echo of what he has heard from others, including the odd swear word from a driving incident that I blame on his Dad — definitely not me.
At best, Harry can make choices about the food he eats, the clothes he wears, and the places we visit.
At worst, he requires a translator who understands his individual style of conversing.
Will he always be dependent on someone else to understand and interact with the world around him? Will he always be a stranger to the freedom that language provides?
I truly hope not, but if autism has taught me anything, it’s that all you can do is wait and hope.
Harry has surprised me with his growth throughout his life.
I accept him as he is, but it never stops me from believing that he can exceed any expectations and surprise me again at some point in terms of his language development.
3. How will he cope with the transition to adulthood?
I am having conversations now with Harry about puberty as he transitions through adolescence, but what happens when you can’t explain your feelings?
How do you deal with the unexpected mood swings, new and strange sensations, and changes to the way you look?
It seems unfair that Harry’s body is developing, but his understanding isn’t ready to.
How do I reassure him and explain that what he’s feeling is perfectly natural when he can’t tell me if he’s struggling? How will that struggle manifest itself without the outlet of conversation?
Again, I can only hope I’m doing enough by being proactive about teaching him the changes to expect.
Humor is also a major coping strategy for me. I’m always trying to find the funny side of a situation where I can.
And trust me, even in the toughest of situations, there’s an opportunity for lighthearted humor that’ll help you keep moving forward.
4. What sort of future will he have?
I worry about what will happen as my boy becomes an adult in the world.
How independently will he be able to experience the world around him, and just how much of it will he be able to enjoy if he does need someone with him at all times? Will he ever work? Will he ever know true friendship or experience the love of a partner?
Will my different-looking boy who loves to bounce and flap be accepted by a society who judges people so much on appearance?
Harry’s future is so uncertain — running through all the possible options isn’t helpful. All I can do is put in my best effort to give him the life he deserves, and enjoy all of the time I get to spend with both of my boys right now.
5. Will I have to choose to let him go?
I want Harry to live with me always. I want him in our home where he feels completely relaxed and where his outbursts are as welcome as his laughter.
I want to protect him from a world which can take advantage of vulnerable people.
But even though I want to know that he’s always safe, I worry about wrestling him back to bed at 3 in the morning when I am 66 years old and he is 40.
How will I cope as he gets bigger and stronger? Will his meltdowns ever become too much for me in the far-off future?
The alternative is to see him living his adult life in specialist accommodation. Right now, I can’t bear the thought of that.
As with most of my fears for Harry, it’s not something I need to think about today, but I know that it’s a reality I may have to consider one day.
6. Will he ever really understand how much he is loved?
I tell Harry that I love him at least five times a day. Sometimes his reply is deafening silence. Sometimes he giggles and sometimes he simply echoes my declaration.
Does Harry hear my words in the same way that he hears my instructions to put his shoes on or eat his toast?
Are they just sounds that I make or does he actually understand the sentiment behind the sentence?
I dearly want him to know how much I adore him, but I have no way of knowing if he does or ever will.
I dream about the day that Harry turns to me and says “I love you” without prompting. But I also take joy in our special connection, where words often aren’t needed to express our feelings.
7. What will happen when I die?
This is my biggest fear. What will happen to my boy when I am not here? No one knows him like I do.
Of course, he has family and staff at school who know his habits and little personality quirks. But I know his heart.
I know so much about what my boy is thinking and feeling without even needing any words.
As much as I love the special bond that we share, I would give anything to be able to bottle up that magic and pass it on for when I have to leave him.
Who will ever love him as fiercely as I do? My heart will break to leave him.
Sometimes you just have to face your demons knowing that it’s for the best in the end.
I have recently started looking into what will happen to Harry when I die. There is a great charity in the UK called Sense which has some great resources and advice. I’m hoping that preparing for our future now will give me more peace of mind.
Working through additional fears for extraordinary children
None of those fears for Harry apply to Oliver. None of them were felt by my own mother.
The fears of an autism parent are as unique and complex as our children themselves.
I know nothing of how life will unfold for us all and whether my fears will be justified. But I do know that for every worry that keeps me up at night, there’s a resilience and strength within us all to keep going.
For autism parents, our determination to give our kids the best life possible is our armor.
As we focus on one day at a time, we are fueled by a love fiercer than anything else — and gin and cheese in my case!
Charlie is mum to twins, Oliver and Harry. Harry was born with a rare craniofacial condition called Goldenhar syndrome and is also autistic, so life is as challenging as it is rewarding at times. Charlie is a part time teacher, author of “Our Altered Life,” blogger, and founder of the charity More Than a Face, which is trying to raise awareness of facial disfigurement. When she’s not working, she enjoys spending time with her family friends, eating cheese and drinking gin!