Now the first thing I want to point out is that everything I’m about to say applies to my child, situation and lives. Every child with autism is different. No two children with autism are the same, some children with autism may be verbal, some may be non-verbal, some might like noise, some are noise sensitive, you understand? So this post is about how Dylan and I am sure some parents may relate to some of these points if not all of them.
We still use nappies Dylan as he is not toilet trained and has no understanding of the concept of using a bathroom to do his business. You cannot imagine how many issues this throws up as your child gets bigger and you can no longer buy his size in shops, kudos to Pampers though who I’ve noticed doing a size 7, but then the price tag isn’t as friendly as what prices are for smaller sizes. In England once they reach the age of 4 you can apply to the NHS who will send you out boxes of nappies for your children, thankfully we had a garage to store them in as they will send you quite a lot. Then you’ve got to remember to phone them when you start running low to order some more. Thankfully I’ve heard they have a similar system here in Ireland so I hopefully won’t have to fork out for size 7’s myself for too long.
You also have the issue of changing them while out and about, baby changing rooms are not made for 6-year-olds who are still in nappies. Those pull-down tables are not made for children beyond the size and weight of a toddler; I often have no choice but to take that risk to change to Dylan as the alternative is both of us on the floor which is usually dirty. My recent issue has been the looks of annoyance I receive when I walk out of a disabled bathroom where often these baby changing tables are also put, you just know exactly what they’re thinking as well, how cheeky of them to use that room when he’s not a baby and neither of us ‘look’ disabled. Let’s hope they were not looks of annoyance and that people are not quick to judge and know that disabilities are not always visible.
Dylan is non-verbal, we’ve had 6 years of no back and forth conversation with him, some days I would give my right hand to have a conversation with him, and maybe one day I’ll get that conversation. At the moment we don’t get any words from him aside from the surprise occasions where he will suddenly count numbers or shout his name out.
The crying and whining
This leads on from the non-verbal part. I feel cruel calling it whining, but when they’re tired, and you know sleep will sort it out, you know exactly what I mean by that. When a baby cries, you have to figure out what they want, be it food or soothing because they’ve experiencing teething pain. This is what it’s like Dylan, he can’t tell me what he wants, and in frustration, he will cry when he’s troubled by something like us not understanding that he wants that pack of hula hoops on the top shelf. When he’s ill, you have to figure out yourself what is wrong; he cannot tell me what is hurting him as his brother or sister would.
Special care setting
Just like a baby needs to go to a nursery or childminder who understands the needs of a baby, Dylan has to understand a special educational needs setting who will understand his needs as a child with autism. He went to a special needs nursery, and then on to a SEN school who knew what they were dealing with and how to deal with it. They know how to change his nappy and know that he cannot talk, so they also have to guess his needs.
He still uses a pushchair, that’s 6 years of having to push around a pram! My poor back is in ruins, and it wasn’t helped with the years that we had to push two of them around in a double. He uses it we think because he feels safe in it, he loves being strapped into things and 5 minutes of walking, and he wants to be carried and will get extremely upset if I don’t pop him on my back or carry him, so the pushchair it is. It’s also a useful tool in keeping him safe, he has doesn’t know how dangerous roads can be and we all know it just takes them stepping out on the road at the wrong moment for it to be disastrous.
Putting things into their mouth that they shouldn’t
Anything and everything goes into a baby’s mouth right? With Dylan, this is called PICA, and this means eating non-food items, and his current thing is eating sand. Which is annoying considering the beach is one of his favourite places to be. I have to watch him carefully around stuff like polystyrene which he has put in his mouth before, halftime the time is it sensory for him, but he is just so unpredictable, you never know what he might try to eat.
Baby proofing the house
It is stairgates galore in our house; I will admit that this is not just because of Dylan but also our dog. Dylan has no understanding of danger; we have to keep our eye on him 24/7. It is like letting a crawling baby loose in a room; you have to think about all the potential dangers and do a hazard assessment. Before we even moved into our new house, we had to get the windows all changed, so they didn’t open so wide and came with a lock and key. When I got a new washing machine, the first thing I looked up in the instruction manual was how to activate child lock, something you wouldn’t usually go looking for in a house full of school-age children who know better than to mess up your washing cycle. He’s a very bouncy child, so anything that could potentially harm him if he fell over has to be cushioned, the fireplace has soft corners now attached and talking about the fireplace, we won’t even contemplate lighting it knowing what a hazard an open fire could potentially be.
Doesn’t eat solid food
Babies at first can only eat soft food, baby led weaning put aside, but you know what I mean when I compare his diet to that of babies. It’s limited to what he eats, he does not eat hot food and if he had his way he would live off that Ella’s Kitchen apples & strawberries purree pouch. He will only eat certain things and usually the same thing for breakfast, lunch and dinner; this makes our food shop ridiculously expensive.
Walking into our house, you would think I had a 9-month-old or a young toddler judging by some of the toys we have. By the time your youngest hits 4, you would think most of it if not all the baby toys had been got rid of by now. Dylan’s favourite toy is his leapfrog laptop; he loves the noises it makes and will often put it near his ear as if he’s carrying a boombox on his shoulder. SO lots of our original baby toys have stuck around, especially the noisy ones with buttons and we’ve added to them on special occasions as it’s what he gets the most the fun out. So while most 6-year-olds are getting their first scooter or maybe a games console, Dylan is quite content with a toy from the baby aisle.
There’s so much more I could talk about, like how we have to shop somewhere there’s a trolley with a big enough seat to sit him in. Otherwise, we have to take him in with a pram; you can imagine how much room one person pushchair a trolley, someone pushing the pushchair and two children wandering around after them can take up in an aisle. Or how he currently likes being held closely on your lap to your chest, I do love this though, and it makes me reminisce about our breastfeeding days. He will always be my baby boy even if the day comes where he no longer shares the similarities of one.