I get nervous leaving my autistic child at nursery and then this made my day…

​I always wonder how The Monster gets on at nursery as we are so reliant on staff to tell us what he’s been up to. 

There are occasional, definite perks to him being non-verbal. For example it doesn’t matter if you drop something heavy on your toe and shout “Oh Shit”, or you can let out a big fart without the worry of him running back to Daddy to tell him and you don’t have the embarasing questions at the checkout at the supermarket.  Of course these are all hypothetical examples 😉.  As you can imagine there are many, many disadvantages to being non-verbal. 
Do his peers accept him even though he’s a bit different? What has he been doing? Has had a good or bad day?  What has he had to eat? Has anyone been mean to him? Are the staff telling me the truth? 

I ask myself the same sort of things you ask when you leave a baby at nursery…only you’re leaving them in a room with rampant toddlers who know their own minds. They all talk in long sentences, they know how to play with toys, they understand social norms and they have friends.  Even at this young age they spot the differences with their peers, as I once found out when a friends little one asked me why The Monster couldn’t speak. It completely threw me. It was then I realized that they knew he was different. Until then, I thought it was just adults who noticed. 

Today, when we left nursery one of his class mates gave him a huge cuddle and a big kiss. I’d say he likes him. It made my day ☺. 

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I wish I was a mind reader…

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Part of our daily ritual, an absolute must is that the monster has to go on the tablet the minute he gets downstairs in the morning. I allow this until breakfast is done. It allows me to do important things like catch up on emails, the news and of course check out what’s happened in social media land!

It’s a choice of BBC IPlayer for Kids or trusty old YouTube to come up with the goods and 9 times out of 10 they do (hooray!). But take today for example, Postman Pat worked for a while and then he brought me the tablet to indicate he wanted to watch something else. I go through the regulars….

Me: Fireman Sam?

Him: *shakes head*

Me:  Peppa Pig?

Him:*shakes head*

Me: Topsy and Tim

Him: *shakes head*

… (sometime later)…

Me: The Furchester Hotel ?

Him: *dramatically nods*

 Yippeeee! All I need to do is find it, put it on and he will be happy. Or not.

I don’t know exactly what he wanted this morning but it definitely wasn’t The Furchester Hotel (A shame because I’m so over hearing that screeching Norman Price on Fireman Sam and Special Delivery Service from Postman Pat!) Waving profusely at the screen,  jabbering away in his own mumblings and physically putting my finger on the tablet to turn it off. He was not happy. We went through the whole options again and again….and again! Each time him pointing and nodding to indicate what he wanted but when I put it on I was met with the same head shaking. A mind reader I am not (I have to remind his Dad this on a fairly regular basis)

Other Half: “Did you get me XYZ today, I’ve run out”

Me: “No, I didn’t know, you didn’t tell me”

Other Half: *mutters unrecognisable / words not to be repeated*

Me: “I’m not a mind reader!”

Sorry, I digress! 

The frustration is real. For both of us. Eventually he bursts into tears. Big. Fat. Unreserved tears. I hug him tightly and wipe away the tears and splodges of snot from his face and unfortunately my bare arms (gross!). He’s so frustrated that he can’t tell me what he wants. Frustrated because I don’t understand him. I’m sad because I don’t know what he wants. I think perhaps he is thinking of a particular episode he wanted to watch but without him being able to talk I don’t know.

This is becoming fairly typical. Him wanting something and me not understanding what. Of course, many toddlers are the same. They say one thing and mean another (My other half would probably argue I’m the same!). It must be so damn frustrating not being able to communicate exactly what you want.

To help with communication we are still working on the signing and the visual picture boards are work in progress. In the meantime, I’ll take the tears, lumps of gooey snot and the physical pinching, smacking and lashing out.

Today, I wish I was a mind reader.

A trip to the park on a sunny Autumn day. Idyllic it is not!

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Taking Daddy to the park to show him how I try to make friends (by shoving people and invading their personal space obvs 😳)and what a daredevil I am at running in front of the swings…I did that twice just to increase his and mummy’s heart rate a couple of times. Plus mummy can’t run after me as fast now she is 7 months pregnant so I can get even closer to an accident…it’s great fun hearing her yell my name…it’s like a primal scream and I find it hilarious 😂.  Mummy leaves the park with silent tears rolling down her cheeks because once again people were looking at me like the naughty kid, I’m not naughty I’m autistic and I don’t understand danger nor social norms. Oh yeah, we called to the shop on the way home and I managed to lose daddy’s grip of my hand and managed to almost run into a car. That’s how we roll on a Sunday #neveradullmoment

 

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

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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 :-).