Maybe you think of someone who doesn’t make eye contact and lacks all forms of social behaviour. Maybe you think it’s got to be exactly like Rain Man, or –depending what generation you’re part of- Sheldon Cooper. Whatever your thoughts on autism are: it isn’t easy. Take note however that autism can present itself in a wide array of behaviour and character traits. The spectrum is so huge that one autistic person simply cannot be compared to another one. It just happens to be though that I am –by far- the most notorious autistic child you could possibly imagine. My name is Finn, two years old and autistic.
Since the day I was born, my parents haven’t slept well. I was definitely a colic baby, extremely restless and waking up as frequent as every 30 minutes. Though my sleeping behaviour is improving, I haven’t gotten the hang of it just yet. Excessive crying has been replaced by fuzziness or sudden bursts of babbling. I don’t have a teddy bear or something like that – autistic children rarely do-, but I do like to hold on to mommy’s hand and use it as my favourite ‘pillow’ in the whole world, so she has to sleep next to me. Always. If she’s not there, I’m back to being super colic again. Yes, I have separation issues, like most autistic children. My parents did try more than once to let me sleep in my own bed using Super Nanny tactics in their effort and bound to let me cry for at least 10 minutes, but long before reaching that time span, I was already puking in bed and my mommy and daddy had to come in earlier than they hoped. Yes, these were not easy times. Some people around my mom and dad told them that I did the puking on purpose and they had to ‘man up’ and be more strict to me. Thankfully they never did. I don’t know why I cried and puked so much, but somebody once said that crying is often used by autistic child as a literal cry for help. I think my mom and dad instinctively felt this and were always there for me. But it was a struggle and it still is, especially putting me to bed. That has never been easy and I don’t see it becoming easy any day soon.
Autistic children are known to be bad eaters as well, and I was no exception. At first it was just milk and I mean just milk. I found it very hard to try something new and I think my mom and dad threw a party when I finally consumed something else besides milk. I sort of got used to conventional, processed baby food in jars. For babies up to 4 months, this food is close to being drinkable. But around 8 months, the structure is considerably different. The food becomes more chunky and rough, and this was a definite deal breaker for me. I just can’t get it down and it forces me to throw up, so I’m still eating food made for 6 months old babies since its texture is still quite smooth. Don’t I eat any real solid food then? Sure I do. But it has to be familiar. If I’ve never eaten it, chances are big that it’s going to take loads of time and effort before I’m even going to try it. I eat French fries, chicken nuggets, noodles, chips, pizza (recently) and I love to drink Coca Cola. Doesn’t sound too healthy right? Don’t worry; I also eat carrots once in a while, bananas and plain rice. My mom cooks various vegetables for me every night, blends it when necessary, but most of the time I don’t even give it a try. So it’s back to chicken nuggets again. Probably offensive to many parenting and diet ideologies out there, but my parents have learned a couple of things: when you’re dealing with an autistic child, you have to break with conventions and expectations, think outside the box and most importantly: don’t mind being judged. They are just very happy that I’m eating at this point and that I never go to bed on an empty stomach. And so am I.
Besides sleeping and eating problems, I was extremely uneasy when going to the hairdresser for example. These things simply could not be done. Doing grocery was a nightmare for my parents at first. Thankfully that goes a lot better nowadays. I bonked my head on the floor when I didn’t get what I wanted. And much more difficult behaviour like that. It wasn’t easy. I’m still a bit of a loose canon: extremely active, I love to run, climb, jump and I’m not always aware of the dangers involved. My parents initially thought I must have had ADHD or something.
To all parents out there dealing with similar situations: it’s ok to say it’s hard. It’s ok to be tired and distressed at times. It's ok to scream out loud. We are not easy. But we do need you, even if it seems at times we are asking too much from you. We can't help it. But let me tell you something: despite all the hardship my parents went through, there has never been a day that I didn’t kiss my mommy and daddy or gave them a hug. I like to snuggle and be as close to them as possible. These moments have swept their tiredness and tears away in a heartbeat. During my first two years, they made roughly 15000 photos of me. That’s right: 15000 memories captured! They obviously had a lot to be proud of and wanted to preserve many moments to cherish for the future.
You also have so much to be proud of! Because even if we keep you up all night and make you feel powerless and wore down during the day, we are going to laugh in the morning or babble in a way that it makes you laugh. We are going to throw our toys, take our first steps and do things that will surprise you. And those moments make everything worthwhile. Don’t forget to take at least one photo today, ok?