Five things not to say or do to the parent of an autistic toddler!

pizap-com14801949876231

1. He doesn’t look disabled / autistic?

REALLY!? Well you don’t look stupid but here we are in 2016 with me having to explain that not all disabilities are visible from merely looking at someone. Even someone with one arm and one leg no longer has to look disabled thanks to prosthetics. I am grateful that my gorgeous boy doesn’t look different from atypical child but it is frustrating that because he doesn’t have something visually different about him that somehow makes him less disabled, less autistic. Perhaps he needs to wear a big flashing badge to draw attention to it everywhere we go so that judgmental stares and comments can be averted and his often odd behavior can be excused…*rushes off to craft box to fashion up a badge*

2. I’m sooo tired. My little one had me up in the night.

Didums…my heart bleeds. You mean to say your child who usually sleeps for 36 hours a night had you up for half an hour? Just for the record, my child has a Personal Best of sleeping through the night for 12 consecutive nights. I’d hazard a guess that he has slept through the night approx 30 times in his ENTIRE LIFE. My body clock is screwed, even when he doesn’t wake it isn’t uncommon for me to be awake for 2+ hours in the early hours. I can’t remember the last time I had 6+ hours straight sleep. I’ve suffered sleep deprivation that I don’t think I will ever recover from. It has had me sobbing into my pillow, begging professionals for help and being so delusional I don’t even know what day it is.

Ps. I’m not that mean that I don’t sympathize with your 30 minutes lost sleep but unless we are going to sob about it into a big slab of cake I’d rather not know.

3. He’s autistic because he doesn’t talk…

It bugs me that people assume he is autistic just because he is non-verbal. Yes, this is a factor and was one of the early giveaway signs (well actually it should be he is non-verbal because he is autistic) but it is not the only factor in his diagnosis. He might have very limited speech, he might have none, he might go on to be the next newsreader. Time will tell but let me clear something up, if he does talk his autism won’t be cured. It’s much more than that, I will talk more about his funny quirks in another post but for want of a better expression he “isn’t wired up properly”. He thinks and behaves in a different way to atypical person.

4. Don’t stare, ask!

I did so well for the first couple of years, I was a hard nut to crack but inevitably he succeeded. He managed to break me in public. Reduce me to tears because he was seemingly the naughty kid. Because I felt judged. Because my parenting skills are so substandard that I can’t control my own child. I have sobbed now more times than I can count because of this. I can feel your burning stares when he is running riot, when he is banging doors, when he is pushing children trying to make friends. This is one of the reasons we don’t venture to new places that often, it’s stressful.

We have our favourite haunts, places where people have the measure of my whirlwind and where we both feel happy. Of course, there are times even at these places when we get the odd stare. Our favourite stay and play is a safe haven, a place we go to the same time, same place, same people every week. Over time new faces appear, there was this one in particular that stared a lot over the weeks to the point where in my head I had mentally built up how our confrontation was going to pan out and was getting more infuriated every time I glanced at her and she was staring. Say something bitch, I would be thinking, until eventually she did confront me. She had witnessed us interact by signing and immediately asked me if he was deaf. No, not deaf. I explained that he couldn’t talk and signing allowed him to communicate with me. She looked at me puzzled, intrigued by why he couldn’t talk so I told her he was autistic. Her response? “I thought he was, I have two grown up boys who are autistic. I’ve been watching him for a few weeks and thought how similar he was to them when they were his age”. Me? Relief. Guilt for having panned out how my confrontation with the bitch would go! And now, someone I can talk to for advice and support. Someone who “gets it”.

5. Don’t assume I want to hear that your child is the same!

For a long time before diagnosis we as parents knew that our boy was a bit different. You are told from way before your child is born not to compare them to anybody else, a difficult thing to do but something I’ve managed to achieve for the most part. Obviously it’s natural to make some comparisons around milestones like walking, talking, potty training etc. I’m sure there will be many more as time progresses but I am a strong person and can see where my child is different to yours. At least for the first 18 months of me telling people, often friends about the start of our investigative journey; which we knew ultimately boiled down to the fact he was autistic, I was met with comments such as “he’s fine”, or “Little Joe does that too”….really!? If he ate a pound of dog poo would Little Joe have done that too!? (By the way this has never happened….yet!)

For me the differences were glaringly obvious. Now I get that people want to reassure you and I’m a glass half full kinda gal but it really mucked up my head when people told me their child was doing the same as mine when in reality they weren’t. Was it all in my head? Am I just imagining it? Are all children this much hard work and if they are why the hell is the population so big!?  Like they understood what being up for 6 hours in the night was like when “Little Joe” may have woke a couple times but went straight back to sleep. I could see your child start talking but you would play it down like they weren’t really saying much. I could see they played with toys differently and their social skills were poles apart.  I could see your 8 month old hitting milestones that we have only just reached but you are still telling me “he’s fine”. Actually, it’s only recently that I’ve felt people have been on my side, probably because of all the intervention from professionals, or was it because you could actually see what I could, or were you just trying to save my feelings and be supportive? I know it was the latter by the way. My friends are nice people (obvs), and just for the record, I’m nice too; I sometimes think people understate their childs development to not hurt my feelings.  Please don’t, I love hearing stories of the things your cherubs have said and done :-).

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s