What parents of neurodiverse children want you to know
For most, there are moments where parenting is hard. But being the parent of a neurodiverse child, can take this to another level.
A child with autism, ADHD, dyslexia, dyspraxia, Tourette Syndrome or any other condition which falls under the neurodiverse/Special Educational Needs (SEN) umbrella, struggles more than their neurotypical peers. Meltdowns and frustrations at home after a day at school of trying extra hard, conforming and, in many cases, especially when it comes to girls, ‘masking,’ can be off the scale.
As the mother of two neurotypicals and one neurodivergent child, I’ve seen this first hand. Our nine year old, who has autism, sensory processing disorder, dyspraxia (keeping up?!) and I think, as yet undiagnosed, dyslexia, finds life significantly harder than his siblings.
He struggles with everything from putting socks on, using an iPad, interpreting language, dealing with anything unexpected to making friends. Since he’s got additional support at school, things have been considerably easier but parenting a child with SEN issues brings its own set of challenges.
Part of this includes, sometimes, the lack of understanding, knowledge and, in some cases, empathy from friends and family. So I asked a number of other parents of neurodiverse kids what they wanted other people to know.
Getting a diagnosis is big deal and we might feel a bit lost for a while
“I felt getting the diagnosis was a bit like having your first child,’ says Jo Rowbotham, coach, interior designer and mum to Iris. ‘You get the diagnosis and then leave with hardly any guidance. I wish there was more awareness of it and all its complexities. I’m yet to find an infographic that says it succinctly or a way to explain things clearly.”
Unfortunately, for Jo, this led to a few friendships falling by the wayside. “It prevented me from telling some close friends and, regrettably, losing or cutting myself off from people.”
Be the friend
Fellow journalist Mel Hunter says: “Be the friend (I can count on one hand) who enjoys the neurodiverse child and is interested in them and includes them. Be the friend who explains to their own children that they just want to have fun and be included just like all other kids. Be the friend who knows what the child loves, and starts talking horse racing with them when they walk through the door. It matters. It makes them count.”
Charlie Beswick, blogger and mum to 16 year old twin boys, including Harry, who has Goldenhar syndrome (he was, she says, effectively born with half a face), autism and a severe learning disability, says: “I might appear like I have it all together but often the truth is very different. A quick text to check in on me (or a visit with cake, just saying) goes a long way.”
Don’t make presumptions based on labels
“There is a huge difference in girls/boys with ADHD and I wish people would accept that it is a neurological condition, a disability, and not just my daughter being rude, disruptive, awkward. It is her brain that behaves in a different way, not her,” says Lucy Baker, a coach and mum to Nancy, 11.
Please offer to babysit or help out
“Babysitters and childcare are hard to find. If you have the time and know our kids well enough that they’re comfortable with you, an offer of either will be the best gift ever,” says Joanne Jeffries, a freelancer writer who has a nine year old on the waiting list for an ADHD and ASC assessment.
Appreciate that kids with SEN can be difficult. I mean, really difficult.
“People try on the whole, I think, to understand,” says Cathal Morrow, a PR and dad, “but as much as we love our kids, the reality is that children with SEN can be a pain in the arse to deal with. Our son has so many incredible strengths, and so much to offer but this can get overlooked at times.”
Please invite our children to playdates and parties
I can’t stress this one enough. I was recently having a post drop-off chat with one of the mums from my younger two’s school and she casually mentioned they’d rescheduled her son’s birthday because they had been self-isolating. It felt like a sucker punch. I knew nothing about it.
Her kids are in the same class as mine and we’ve met up quite a few times. She’s one of the few mums I’ve been open with about our issues and I would have said her boy was one of our son’s (few) friends. I didn’t say anything because I didn’t want to make a fuss but I felt so hurt.
Don’t get me started on the mum who told me how stressful it was for her to look after my son for a few hours after school one of the few times she had him back!
Neurodivergent children may find it harder to join in at playdates and parties but that really shouldn’t be a reason not to ask them. Excluding them says more about you than it does about them.
But, having said that, don’t be offended if we can’t come
“We may cancel social events at the last minute. It doesn't mean we/they didn't want to come. They couldn't, even if they were really looking forward to it, actually, probably because they were really looking forward to it,” says Cathy Williams, a doula and mother to a child with autism/PDA. Sometimes the anxiety and excitement can get too much.
School is not the same for us as it is for you
The struggle to get your SEN child the right support at school can be incredibly difficult for us parents. “Schools do not always get it! They think teaching by example and telling naughty kids off, will help them to learn. It doesn’t. It can’t, especially if they have something like ADHD, like my daughter,” says Lucy.
Likewise if you have a child with dyslexia or another learning issue, their experience of school is likely to be clouded by this which makes it much harder for them and for us, as their parents.
So now you know a bit more about what it’s like for us with neurodivergent children in our family. We hope it helps explain things a bit more clearly. And please don’t forget to bring cake (or wine) next time you pay us a visit!
Georgina Fuller is a freelance journalist and editor who regularly appears in the national press, and writes and advises about a number of different issues, including parenting.