10 Things I wish I'd known sooner (as a parent of autistic children)
#AutismAcceptanceWeek
- Home-Start Parent
Some of our parents/carers with neurodiverse children have helped us shape up this list for fellow parents and carers out there.
1. You don’t have to wait for a diagnosis for support.
Nurseries and schools follow GIRFEC (getting it right for every child) and should support all children without the need for diagnosis. Health visitors can also support younger children get referrals for places that can offer support.
2. Find something that is just yours.
Something that helps you relax and be calm. At times, this is impossible, but self care is important.
3. If you struggle to advocate for yourself and your children, find someone to help.
It can be hard and overwhelming to talk to professionals, or even other adults about your children. If a friend or relative can’t do it, groups such as Home-Start can help. You have not failed. You’re walking a different path than most, at times harder. Sometimes the bad days feel never ending. But it does get better. With the right help, you and your children will thrive.
4. If you struggle to advocate for yourself and your children, find someone to help.
You don’t need to take on board everyone’s opinions – your child is not “broken”, or “just badly behaved”. You are not a “bad” parent. Our children should learn to thrive and live in society as unique individuals.
5. High functioning does not mean low needs.
This is a harmful generalisation.
6. Just like all children, your child is an individual.
When learning things to help them, remember not everything is right for your child, and it’s OK to say no if something isn’t working. It is also trial and error. So sometimes we need to try things a few times in different ways to see what works.
7. Let your child learn to say no.
We need to give our children boundaries, but when safe and possible we need to let them set their own. Living in a society not built for them is scary. The power to say no, it’s too much, and know they are safe in doing so allows them to be more confident in trying new things as there is much less fear of being forced into something that will be overwhelming. One way we do this food. Our child has a limited diet. If trying a new food I always put something else on I know they won’t eat. (Obviously never touching). By being able to say no to that, they usually will at least lick the new food…. most gets an eww, but we’ve built up from 3 things they’d eat, to over 20.
8. What works for your family is your “normal”.
Don’t judge yourself by other people’s standards. If it works for your family and they are happy then that is how it should be.
9. Learn to ask for help.
Whilst it is still a work in progress more help is available now than ever before. And no matter how we feel on the inside, we often look like we’re coping. And always ask the question. Even if it seems silly, or like something you feel you should know. We are all learning. And learning is the best way we can help support our wee ones.
10. Most importantly: You are not alone.
It may feel like it, and in the midst of a meltdown in the middle of Tesco, you might literally be on your own. But we, the other parents, are out there. We’re all reaching towards each other through groups like Home-Start and Action for Children. And whilst we might not call around each other’s house for coffees. We are here. Wanting to lift you up and help you move forward. By reaching out to any group that includes other parents we can find new support networks and access to services we didn’t know about. And we listen without judgement.