By ROBYN CAMPBELL
I recently read an article that questioned why there were so many “happy” autism blogs.
“Where are all the angry ones?”
She was right. Living life with challenging kids has so many frustrating scenarios, why aren’t more people writing about them? So I thought I would make a list and share with you all how it really is, the not so happy side of autism.
The things that I hate about autism:
1. Getting a phone call that my son has punched or hit someone out of frustration while knowing that inside he has biggest, softest, most caring heart anyone could ask for.
2. Watching my son breakdown with anxiety and fear when facing simple challenges, like trying on a new shirt or eating a new food.
3. When I lose my patience, having a Mummy meltdown and yelling, “I just wish my family was normal!”
4. The volcanic explosion style arguments that break out between my boys because they can’t communicate what they want and don’t understand why no one else sees the problem from their perspective. No matter how irrational their idea is.
5. So many milestones take so much longer to achieve. It’s hard to watch other kids become responsible and mature and wander if your child will ever achieve it.
6. Constantly having to be on full adrenaline alert at any public place as your child may wander off, break something, say something or do something that puts themselves or others in danger.
7. The mess, oh my, the mess. I know that being a Lego genius means some amazing creations but it also means that the 1000 pieces he doesn’t need at the time end up on the floor. In the hallway. Up the staircase. In the toilet!
8. The constant need for stimulation, and I mean constant. From the moment they wake till they finally go to sleep their little minds are so active that I spend most of my time finding more and more things to keep them busy. Anyone wishing to donate Lego or Little Bits electronics to help the cause would be greatly appreciated!
9. My son now being aware of how different he is. “Why do I act younger than everyone else my age?” Being the easy target for bullies due to their naive nature.
10. I get tired. I need a break. I become frustrated that I’m not doing all I can to help my boys.
So there it is. A list of the things that make my life and my boys’ lives difficult because of autism. But to be honest, I’m not sure what the point is? I figure I have two choices in life. To focus on that list, and be miserable, unhappy, frustrated and angry. Or focus on this list.
The things I love about autism:
1. Being different. Being “normal” is boring, let’s fact it, nothing new, different or interesting has ever happened from thinking the same as everyone else.
2. My boys have very strong emotions, they may become angry but when they feel love, it’s intense, wonderful and overflowing. My bucket regularly gets filled.
3. The glimpses I get to see of a unique perspective of everyday life. I love that I know over 100 names of Thomas the Tank engine trains and can tell you which real life tender or tank or traction engine inspired their characters.
4. When milestones are reached, each and every one of them feels like a mega victory. I don’t know too many other families who throw random acts of kindness parties.
5. The families I get to meet. There’s an instant bond you feel with other families who are dealing with challenging kids. That calming smile you can pass on to another when you recognise the “here we go again” expression in the meltdown aisle of the supermarket.
6. The innocence. While other ten year olds are in the playground talking about boobs and butts my boys are in the library talking about their Minecraft houses and hotels.
7. I am constantly challenged. The challenges give me the drive to help my boys become the most awesome adults they can be. Adversity drives the human spirit towards ingenuity. I only sold 800 Tumbletops but I’m sure the Mum’s of accident-prone Japanese toddlers appreciated them.
8. The understanding and compassion my boys will eventually develop from having survived the bullying, confusion and a childhood of being “different”.
9. I appreciate the little things. In fact, I appreciate the teeny, tiny things. A warm cup of tea. Ten minutes of peace and quiet. Sitting together as a family to eat dinner, for at least 5 minutes. Small things bring me great joy.
10. I appreciate the big things. Every time I feel like it’s all too hard, I stop myself and remember that I HAVE three children, something that not everyone gets to enjoy. I HAVE a home, food in the cupboard, a car to drive and a husband who loves me. Most importantly I HAVE hope and faith. Without these I would be truly lost.
I choose to focus on the second list. I choose to look forward and not lament on the past. I choose not to be angry. I choose to be the most awesome Mum I can be and not to focus on the things I hate about autism.
This post was originally published on ‘My three Aspies’ and has been republished here with full permission.
Robyn Campbell is the busy mother of three fantastic boys all on the Autism Spectrum. As well as being a Mum and a writer, she runs two photography business’ with her husband. In her spare time she pastors to kids, runs an entertaining playgroup and is a mad woman on skates whilst playing roller derby. (AKA Bustin’ Bubbles).
Currently, she is writing her second book that takes a humorous look at living with three children with Aspergers Syndrome and keeping lots of parents entertained with her very popular blog www.mythreeaspies.com. You can find her facebook page here.
Top Comments
( This gets a little off-topic but I feel like this is an okay comment to include it all. )
As an Autistic teenager (not high-functioning, before you ask) I understand why some parents find it difficult to look after some of us. However, we aren't all the same!
It's called the Spectrum for a reason. Some kids require more looking after than others, but remember that it's difficult for the kid as well. I for one was a very quiet, well behaved child and I never was told off - I didn't need to be.
We're the ones that are bullied; we're the ones with all the stereotypes and stigma attached to us; we're the ones that suffer when parents, family, teachers, peers and complete strangers talk about how horrible Autism is. We can't help the way we act.
I feel like making a list titled "10 things Autistic children of Allistic parents hate". You are just as difficult to us as we apparently are to you. If anything, you people are worse - you're all confusing, you aren't honest or blunt and tend to say things you don't mean, and I could go on. BUT, I won't... because I know you can't change how you are. Maybe you should think about that before becoming a whining parent. You're allowed to feel overwhelmed and stressed BUT take Autistic peoples' feelings into consideration. Because reading things like this hurts and causes self-hate. Autism itself doesn't cause self-hate, but Allistic people cause it.
Also, whilst knowing that your child has been bullied is undoubtedly a horrible thing, please remember that your child is the one that has to live with that experience. Not you. Whilst this might not be your intention, you're taking the attention off your child and making yourself look like a victim.... and frankly, it's not nice, mature or wise at all. It's selfish.
Before anyone leaves me an angry reply, please remember that by doing that you are blocking out ACTUAL autistic people from speaking out and therefore you are making the problem even worse.
It's time to stop being selfish and actually try to understand us.
(And if you want to understand us better, look at websites by AUTISTIC people. Not their parents, partners, professionals etc. But by them. Trust me, someone who has a disorder is a better source than their mum or dad. Even professionals get it massively wrong sometimes.)
I'd like to say that the mother has lucked out but I don't think she has. At fourteen I was mentally about your average adult but I always had masks. At home I was about 10 mentally to my family, to my friends I acted like a more intelligent fourteen year old and to my teachers I acted like an adult. Some teachers noticed and commented on how fast I could switch behaviours or emotional tones. I had a bunch of suggestions to go as an actor when we did plays in primary school. In reality right now I'm dead inside emotionally and I don't think that's going to change. As soon as the first mask goes up it has to be taken down fast. Otherwise we build more to deal with the bullying. In one year I'd managed to manipulate so many different opinions I had a list. Only a few people know or knew the truth and they weren't even my family. Because they'd send me to a therapist to try and fix it. Then it'd all go back to constant bullying. So instead I hid it and only told my best friends. I hope those with autistic children try to take down those masks as nicely as possible and don't try to make acceptions for their behaviour when the other party is fine with it. You only need to say it once. At seven I was told one day to stop faking a mental condition by a teacher simply because they didn't believe in autism. They got sacked and a new teacher came in and was extremely nice but by then I'd already started the first mask. I do ramble but I do hope that everyone realises to treat autistic children as more mature then you'd think but also realise that in some areas they are going to be younger and a lot that are extroverts will not have many friends because they are inhibited.