Parenting a Child with a Hidden Disability
Parenting is such a rewarding and important job- but a really hard one. There’s sleepless nights, endless washing, cooking, cleaning and bums to wipe every day on repeat. But parenting a child with a hidden disability even trickier. Hidden disabilities are the challenges that you can’t see- a child might not ‘look’ disabled but might have invisible struggles. This includes: Autism, ADHD, PDA many others. It’s particularly hard that it’s ‘hidden’ because people assume that the child should be able to do everything a typically developing allistic child can do- but they can’t and it’s not the child or parents’ fault.
There are appointments. So many appointments: speech therapy, occupational therapy, psychology, paediatricians. There’s scripts to fill and meetings to organise to keep your team all on the same page. You watch parenting webinars, read all the books, go to support groups and conferences all so you can better understand and help your child. Everyday routine activities like gymnastics and swimming lessons have to be modified to be one on one with a patient understanding teacher and reduced sensory input at a quiet time of day. Going to the hairdresser could lead to an all-out meltdown or a half-completed mullet. Parties and playdates are a minefield- will they have a great time and make friends or become overwhelmed and you have to carry a screaming child to the car never to be invited back? It’s a roll of the dice. Playgrounds are equally hard- will the other kids there be inclusive or will they say, “You’re weird! Stop following me.” If your child is twirling and stimming and accidentally trips over someone will the parents say “your kid just hit mine.” or will they understand that it’s not intentional.
As for going out to cafes or restaurants as a family- think again. Unless watching expensive food go cold while you chase your child around or try not to disturb other tables with loud YouTube clips while others stare disapprovingly is your idea of fun. If your child has a hidden disability, then it feels like everyone assumes they’re just naughty or rude and you can’t control them. You must be doing something wrong for your child to act like that.
Keep at it!
But you are doing everything right. You are trying as hard as you can to be the parent your child needs, and it looks different to what other people do. You have to pick your battles, you let things go. You hug your child who is melting down, you squeeze them tight, offer a chewy or wait patiently even when they are screaming hitting, spitting and pulling your hair because you know their nervous system is in distress. They are not choosing to be like this. Children behave well if they can and if they can’t- they need you to be the calm one to help them co-regulate. Except sometimes you’re not the perfect patient gentle parent- you’re exhausted, you lose your temper too. The worry and stress you experience wondering will they ever reach those milestones? How will they go at school? In relationships? Will they be happy? Sometimes it overflows onto that little person and they pick up on your stress- and act out. You’re human and it’s ok to have those feelings. It’s ok to say this is hard and I need help too.
To the parents of children with hidden disabilities- don’t worry what other people think. Have faith in your own parenting skills and know you are doing the best for your child. Don’t beat yourself up- melt downs are not a failure- it’s a sign of a nervous system in distress.
Look after yourself, pat yourself on the back. Make time for self-care need to put your oxygen mask on first. You’re doing an amazing job.
You’ve got this!
Written by: Calla Dolton
