ASD: You’re Not Alone

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Note: This blog didn’t quite go in the direction that I had
planned… It started off as being more specific to ASD but turned out to be about acceptance of all special needs families and children. Where I have referred to ‘mother’ and ‘her’, I have not meant to exclude fathers. Add ‘father’ in too if your world includes stay at home dads or if you are a stay at home dad. Most of the blog can be applied to anyone struggling as a parent or with life in general. We all have our moments, we all need friends and we all need kindness and understanding
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There are many families out there now wondering if their child is developing normally.
There are many families out there now who have just received an Autism Spectrum Disorder (ASD) diagnosis. There are others who are waiting for a diagnosis or who are about to start the process of getting one. This process is daunting, expensive and overwhelming to say the least.
There are many parents out there with high functioning children on the spectrum who struggle daily with being told how ‘normal’ their child looks and that they can’t possible have ASD. These families don’t quite fit in with ‘mainstream’ families, yet they don’t quite fit in with ‘special needs’ families either as they may not deal with the severity of a child who is non-verbal, has obvious physical disabilities and/or acute medical needs.
I am going to tell you that you are not alone. Your feelings are valid. Your struggles are valid. Your child’s diagnosis is valid. It is real. I get that when you get home each day all hell breaks loose as your child has spent every ounce of their energy holding themselves together. That as soon as they get outside of their classroom/to the car/to your front door, all the day’s frustrations, setbacks, efforts and troubles come out in one big meltdown. You have to deal with hours of screaming, no communication, and guess work as to what went wrong and how to fix it without setting off the next meltdown. Then there is dinner time… a whole other level of dramas.

Why doesn’t the teacher get to see this side of my child? Why don’t family and friends get to see this? Why is my parenting blamed or judged for something I have no control over? My child can flip from ‘normal’ to ‘crazy’ in about two seconds, seemingly without warning
or reason.

Having a child (or children) with a sickness or disability is emotionally, financially and physically taxing. It affects relationships; not just between your and you children but with husbands, wives, siblings, friends, family, classmates, teachers and the list goes on.

What is the point of all this? What can we do to help? We can’t fix it or change it. Some things are the way they are. We don’t deserve it, we didn’t ask for it, life isn’t paying us back; some things just are. But sometimes knowing that others are in the same boat as you helps. Sometimes speaking out about it helps. Living with a child with a disability can be a lonely journey and sometimes it helps to know that others have been there before you and understand some of what you are facing each day.

What little things can you do to that will make a difference in the life of a family with special needs? What can you do to accept and understand these families and children?
Listen: I think the biggest thing you could ever do for a mother of a child with a disability is to listen. Listen without judgement. Listen without telling her that her child is fine. Listen without adding in supporting evidence that her child is fine. (This makes her feel crazy; that she is imagining all the things that are not quite ‘right’ with her child). Let her vent; even if she sounds ridiculous and is clearly operating on next to no sleep. Even if you don’t understand her; respond, ask questions and be interested. It will make a difference to her. Yes she is different and lives differently, but she is still just like you.
Coffee: Do you know how many mothers have lost their friends soon after their child was diagnosed with a disability? Lots. Autism is not contagious. Downs Syndrome is not contagious. I’m pretty sure there isn’t actually a disability that is contagious. So… invite a special needs mum out for coffee. Not for you, but for her. Offer to pay too; having a child with a disability tends to chew up any spare cash and things like coffee and lunch are considered ‘luxuries’. Once you’re there, listen!
Support without judgment: It is easy to think ‘you should try this’ or ‘parent this way’ or ‘you should discipline your child more’ when you see that dishevelled mum with the ‘feral’ child screaming at the top of their lungs, the WHOLE way round the shops. How do you know she hasn’t tried the things that you think would help? How do you know she hasn’t tried a million different ways to get her child to be calm in the shopping centre? The mum doesn’t control the temperature of the shop, the lighting, the sound, and the smells; all of which are triggers that can set off a meltdown in a child with ASD or sensory issues. The mum probably doesn’t even know that these things are triggers for meltdowns, especially when the child is young.
It has taken me years (and lots of watching at therapy sessions) to realise which triggers are likely to upset my children. Most of the time I would have both of them on the floor screaming at the shops (until I discovered online shopping!) One time in particular I remember my daughter at around two years old trying to rip the skin from my body and face because she was so angry. An angry two year old is strong. And loud. And inconsolable. I have no idea what set her off and I can tell you that I was tempted to walk away for a while. I didn’t. We survived somehow and no doubt went home to hide for a bit.
The stares and glares certainly didn’t help…
So what would help?
An understanding smile from another mother. Any mother.
Ask if there is anything you can help her with, even though there probably isn’t. But asking is still showing that you care.
Give her your place in line at the checkouts to help her to get out of there quicker.
Ignore her if you must but don’t comment negatively. That doesn’t help anyone.
If money isn’t an issue for you; pay for her shopping.
Don’t offer advice. She probably has been given enough advice to last her a lifetime. Don’t tell her that she should consider a wheat free diet or Current Affair’s latest remedy for her children. I would be rich if I had a dollar for every time I was told of the magical bean that would fix the screaming child… but I digress and that is a whole other story.
Do show her that you care, even if you don’t understand. Something that is little to you may mean the world to her. Especially on a crap day. And shopping days tend to be pretty crap days.
Meals: Instead of advice, judgement and stares, how about offering to drop off a meal? And I do mean drop off; not to stay for a chat and not to go inside and look at the state of the house with children climbing the walls, washing in a pile taller than your head and all manner of grot on the floors (been here done that). She may say no and that’s ok too.
It’s the fact that you have offered.
Invitations to play dates and parties: This would be one of the most heart breaking issues for mums and families of special needs children. I am blessed to not have experienced my children being ignored, left out or excluded by peers, but countless other mothers have. Is your child in a class at school with children with disabilities? Do they get invited to birthday parties? Do they get invited to play dates? Were they invited to your child’s last birthday party… or were they excluded because they are different? Just something to think about, especially these days with social media. It may be something you have never considered, thinking that a child with a disability wouldn’t want to come anyway. But they do need to be included too. Nothing is worse for a mother than finding out on Facebook that the whole class was invited to an event that morning, everyone that is, except her child.
And finally, if I try the above, will all my good intentions and actions be accepted with appreciation and gratefulness? To be honest, maybe… and maybe not. Don’t be upset if she doesn’t react the way you anticipated. Don’t be upset if she reacts negatively. Try again another day. A mother that you try to reach out to and accept, may well be saving every scrap of energy to deal with what is bound to happen after the next school run/shopping trip/outing. She may not be coping, and may not want you to see how vulnerable she is. She may be on the verge of tears where a quick escape is all that she can think of or do to keep herself together; and if those flood gates open, who knows what will come out? This is a part of the journey for a special needs mum. But she will remember your kindness. She will appreciate it deep down. She will know that you care and that you tried.

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