This article appeared on April 9, 2018 on Zoom Autism Magazine
My son is the most adorable child on the planet. This irrefutable, undeniable fact has been independently verified – by both his grandmas. I am immensely proud to be his mother.
Don’t just take my word for it: he’s bewitched pretty much anyone who’s had any kind of role in his life. The day we brought Darragh in for his first day at Knockevin Special School was especially memorable. If David Beckham had walked in behind us I doubt the women thronging the school reception would even have noticed – they were too busy swooning over the three-year-old cherub with the blond curls, electric blue eyes and captivating smile. I knew immediately we were in the right place.
People often ask me what his ‘special ability’ is. I tell them he can eat his own body weight in pizza (true). My husband tells them he can fly (not true, but a great way to make their heads explode).
People also say things like “It must be so hard for you”, or “I don’t know how you do it”. This is usually accompanied by a social worker head tilt and funereal facial expression. I tell them it’s all good, that this is our ‘normal’ (whatever that means).
I know it’s well-intentioned but I don’t want their pity. I love my kid exactly the way he is. He’s wonderful. He puts the ‘awwwww!’ into autism. He makes my heart burst with pride. Also, it doesn’t help. It tells me they see my child as some sort of burden, which he most definitely is not. I don’t want to change Darragh – I want to change the pervasive idea that being different is A Bad Thing.
That means seeing the child standing before you – really seeing them. It means truly accepting them for who they are. It means letting go of any preconceptions of how they ‘should’ be, what they ‘should’ enjoy or what they ‘should’ be able to do.”
But, of course, parenting is hard at times. It’s messy (both literally and figuratively). You can go through a hundred different emotions in one day. Having a child with high support needs, coupled with the fact we’re both on the autism spectrum, adds extra complexity. Becoming a mother to a child with additional needs is a daunting enough prospect for any woman, since it’s such a huge responsibility. For spectrum women, who are invariably plagued with self-doubt, low self esteem and a fragile sense of self, it can be truly overwhelming. When I brought Darragh home from the hospital, I thought I’m not ready for this.
I was forty.
Every time I made a mistake – and there were plenty – I beat myself up over it. I still torture myself with memories of the things I got wrong. I was constantly exhausted, and I felt hopelessly out of my depth. I was scared to tell anyone how much I was struggling because I was afraid they’d think I was a bad mother.
For parents, the biggest issue is often sleep deprivation. I know many mums who’ve survived on less than an hour’s sleep each night for years. There may also be toileting issues, faeces smearing, self-injurious behaviors, bolting or wandering. There are endless appointments, stacks of paperwork and constant battles for services and support. We’ve been relatively lucky on that score, but I know of many families who have been forced to home school their kids, are unable to access effective mental health provision, or are languishing on waiting lists for assessment.
When you’re at your lowest point, feeling most uncertain and inadequate, seems to be the time when people are most likely to bombard you with ill-informed and often contradictory advice, leaving you confused and making you feel judged and found wanting. We almost sold our house when Darragh was first diagnosed because a chorus of voices confidently told us the only way was ABA and that we would be failing him if we didn’t go down that route. We sought out a range of views and concluded it wasn’t the best option for our son, but we could easily have taken a wrong turn.
And then there is the worry, the ever-present feeling that you’re not doing enough. The fear that you’re missing something, especially if your child is non-verbal or has limited speech. Not knowing what’s wrong when he’s sick. Not knowing what caused the latest meltdown or how to help him calm down. The guilt (in the early stages) that you ‘caused’ all of this. Blaming yourself for everything.
And the fear. Every parent of a child who is more vulnerable than their typically-developing peers has the same thought as they lie staring at the ceiling at 3am: what will happen when I’m not here to take care of my child anymore?
So yeah, it’s not all rainbow coloured unicorns pooping glitter, by any means.
What do you do if you’re in that situation? How do you be the best parent you can be?
When I talk to other parents who are unsure what to do, my main piece of advice is to follow a simple, easy-to-use, two-point plan:
Step One: Love your child unconditionally.
Step Two: Repeat Step One as often as is necessary.
That means seeing the child standing before you – really seeing them. It means truly accepting them for who they are. It means letting go of any preconceptions of how they ‘should’ be, what they ‘should’ enjoy or what they ‘should’ be able to do. It’s about focussing as much, if not more, on their strengths, celebrating their achievements and encouraging their interests.
Be consistent. Be predictable. Be boring. If your parenting style doesn’t invite occasional eyerolls, you’re not doing it right.
Pick your battles. What does it matter if their handwriting is sloppy? Everybody types nowadays. Differentiate between the ‘must get them to dos’, such as anything involving their safety, and the ‘want them to dos’, like participating in fun activities. If they’re not fun for your kid, they’re not ‘fun’, period.
Don’t set your child up for failure. If they are resisting something you’ve planned as a treat, maybe stop to think about whether it really is a ‘treat’ for them. Are you organising that princess themed birthday party for 20 shrieking classmates because that’s what your daughter actually wants to do or because you think she should want it? If she’d rather stay home with the cat, let her.
Make sure you’re not putting your wants before their needs. (This could equally apply to a non-autistic kid.)
Trust your gut. One of the principal benefits of having my autism formally diagnosed was that it gave me the courage to take heed of my own instincts and use my own judgement.
I get that it’s hard, I truly do, but don’t become a Pity Party Parent. If the situation is hard for you, you can be damn sure it’s harder for them. It’s okay to lick your wounds once in a while (not literally, I hope), but don’t allow negative thinking to dominate. Remember to enjoy the fun moments. We have plenty of those.
Now, I don’t consider myself to be either a parenting guru or an autism guru, but I do know this: my son is perfect at being the person he was born to be. I have decided I should let him do just that.
Did I mention that I’m proud of him?
Maura Campbell is a features writer for Spectrum Women Magazineand has written on autism and learning disability for a range of publications. She lives in the Northern Ireland countryside with her husband Stephen, her son Darragh, Ash the assistance dog and Baz the cat (who is no help whatsoever). She was diagnosed with Asperger Syndrome in 2011, the year after her son’s diagnosis. Read more of her writing at Neurodizzy.blog