This is a long, long post. Grab a coffee...a bicky or two - maybe even some chocolate - and get comfortable for 10 or 15 minutes. If you get through, thank you for reading. If not, I totally understand :)
Sometimes it still baffles me how I never cottoned on that there was something not right with my son. Seriously, how could it not have occurred to me? I noticed so many strange little quirks.... so many oddities that didn't line up with what I expected to see at certain ages. I always put it down to something else. The usual reasons I suspect that most autism parents go through. Three of the main ones:
1. He is a boy, so he must be different. I've only had girls so far, and I don't know about boys.
2. He has a gentle nature, he is just a placid child.
3. He might be a bit lagging in development, but all kids develop at their own pace, I should not be alarmed.
Bear in mind that I already had two babies before, and - boy or girl - I knew what to expect at various ages. I shouldn't have made excuses for the quirks I saw, but I doubted myself. I didn't trust my intuition. It is a problem I have had since I was small.
Looking back now, I know that these were all characteristics of his Autism.
As a newborn....
Oh, he slept so much. He always was so placid and just slept so much. For a long time, he didn't seem interested in the world around him. He was difficult to wake for feedings. All he wanted to do was sleep and lie there quietly. Although it worried me some, I still thought I was lucky. However, early on I remember noticing with delight how he would study my face. I thought I had such a clever baby, to be looking at me so intently from such a young age. Now I just think he was stimming off the blink of my lashes, the movement of my mouth as I spoke to him, the line of my eyebrows, etc. He didn't make eye contact, he would just regard my face for a long time.
From the start, he had difficulty with breastfeeding. Once he was latched on, he had a good strong suck, so initially, I thought he was fine. But in the hours following that first feeding, I noticed he was having a lot of trouble latching on. I didn't think much of it at the time, because all babies are different. But this went on for some time. Longer than it should have. He just didn't seem to know how to open his mouth. He would pucker his lips and make a tiny "o" shape, but couldn't open wide. At six weeks, when he should have well and truly had a grasp on the skills needed for feeding, he was still having trouble working it out. I remember sitting on the couch in the middle of the night once, holding a starving, crying baby and just crying my eyes out, because I had been trying to latch him on for at least half an hour, and he still wasn't getting it. Such a simple thing - to open his mouth wide enough - but he just couldn't get it. It was months before he had the right skills. Even with all the difficulty I had breastfeeding the girls, it never took them this long to work things out. I was baffled and stressed. Why could hejust not get it?
Similar to feeding, it seemed to take him a long time to retain the dummy in his mouth when I gave it to him. He would suck for a little bit, then lose it. It took him way longer than it should have to figure out how to keep it. I always wondered why it took him so long. The girls seemed to get it almost immediately.
Diet...
Making the transition from pureed food to chunks is always a little tricky for a baby. They often gag at first as they are working out when and how to chew. But it usually doesn't take very long before they get it. My Little Man had a lot of difficulty with this. So much so, that I had to actually go back to the purees for a while. Every time I tried to introduce chunks, he would gag and gag and gag. He just couldn't 'get' it. Some days I wondered just how much he was actually eating, because he struggled so much. What was even stranger, was that with finger foods - where he had to bite and chew - he was fine! But a casserole or similar would send him gagging something awful.
At about 18 months of age, Little Man suddenly stopped eating his veggies. Until that time, I was able to feed him pieces of broccoli, cauliflower, peas and even carrot. Just before I noticed this change, we had been away on holiday. During that time, I hardly cooked - we ate out and we ate a lot of fish and chips. The only thing my son would eat off the restaurant menus was chips. So when we returned home, I thought he was just being fussy in the normal toddler way, because he was 'spoiled' during our holiday.
The last veggie to go was peas. He ate those for a little while after he dropped everything else. I remember he had some sort of test for which ones he would eat, and which ones were rejected. It was very cute. He would pick up each pea, squish it between his fingers, then either eat it, or reject it. Eventually, they all got rejected along with any other vegetable and meat pieces. One thing I found most frustrating, and strange, was that he refused to eat his dinner most nights, but had no problem eating soap. Yes, soap!! He would grab the soap bar when I wasn't watching and eat it... bite chunks out of it! Coughing and spluttering from the taste, he would still go back for more. I could never understand it! I know now that it was the smooth, silky feel of it in his mouth that he was craving. But boy it stressed me out at the time.
About a year ago, I attended a seminar on diet in children with autism. It was there that I learned how the brain processes chewing and swallowing. I found out that my son could only handle one texture at a time, it was the way his brain worked. That explained why he struggled so badly with chunky food in a gravy or sauce, but was perfectly able to eat a biscuit or chicken nugget. It also explains why I still have to chop his casseroles into tiny pieces and mix them with rice for him to be able to eat them - consistency of texture. He still cannot handle pieces of vegetable or meat separately on a plate. But I'm not sure if it's the texture, or the flavour of those foods, because he will eat several kinds of fruit with no problem. He will also eat chopped sausage and of course, chips. But that's it for 'pieces'. Until this day, his favourite things to eat are smooth foods - banana, yogurt, soft cheeses, ice-cream.
Did he hear me....?
One of the more classic signs of autism - he would not respond to his name, and certainly did not come to me when I called him. He was at least 15 months before I really noticed this. But then I was wondering why... why? I'm sure his sisters, at this age, understood when I'd tell them to 'walk with mummy'. But my son? - he just didn't seem to hear me, much less understand!
Independence.....
Little Man was not interested in feeding himself with a spoon. He wasn't interested even until after we had our diagnosis. I kept wondering when he would try to feed himself, patiently waiting. When... when... when...? It's so interesting now to see how my Baby Miss wanted the spoon out of my hand almost as soon as I started feeding her. I had forgotten what it was like with the first two. I was patient, and never panicky. I waited far too long with my questions.
He doesn't play....
I wondered and worried because he never seemed to be interested in toys. He didn't play with them in strange ways, he simply wasn't interested in them at all! I would set him down to play, and it was very hit-or-miss as to what kind of toy would interest him. He might fiddle with something for a few minutes, but inevitably, he would end up staring out of the window at the trees swishing in the breeze. Or just sitting contentedly and staring at the blinds. At first I thought it was because I didn't have enough 'boy' toys. Or maybe I just didn't spend enough time with him. But even after buying him a whole bunch of stuff, he wasn't interested. Unless it had lights. If a toy had lights, movement or music, it might be ok. Might be.
In the same vein, Little Man never really explored his environment. You know how pre-toddlers start to just get into everything? Every cupboard, drawer, box, bench top. Through any doorway, into the cats bowl or the bathroom.... Little Man was never interested. He used to drive me crazy just following me around. Always under my feet, or clinging to my legs. I couldn't get anything done. I was certain I hadn't molly-coddled him, but I couldn't distract him with toys. He was either following me, or just sitting and staring. Both bothered me.
I remember that he never looked in the cupboards and drawers, he would only bang their doors by opening and closing them several times. Every morning, he would come out to the kitchen and go along the cupboard doors, banging them several times each. And he took so much joy from this! It was annoying, but I actually thought I was so lucky to have a kid who wasn't getting into them and breaking the plates, etc. I thought he was such good little boy, so I never chased up the fact that him not looking into them was unusual.
Has to be the same....
I used to have these red pyjama pants that I often wore around the house. One day, as I was in the shower, my son came into the bathroom looking for me. He looked at me with a confused and frightened expression. I will never forget it. He seemed genuinely upset that I was in the shower. I wondered why it upset him so much. Instead of being fascinated, as his sisters were at that age, he began to cry. A moment later, he went into my bedroom and retrieved those red pyjama pants, and brought them back to the bathroom. He shoved them at the glass trying to give them to me. He was so upset. I finished up and came out to dry myself and get dressed, trying to talk some comfort to him. He kept shoving those pants at me. When I got dressed in something different, and picked him up, he seemed a little better for having mummy out of the shower, but all day, he kept bringing me those red pants. He did that for weeks. He wanted me to always wear those red pyjama pants.
I find it interesting that now, his most favourite colour is red. Followed by yellow and orange.
Not mouthing on things....
He never put things in his mouth either. I never had to fuss too much with small toys that were left lying around, or crumbs, or rubbish, because he never put things in his mouth. Again, although this bothered me, I thought I was lucky, because I didn't have to worry about him choking.
It seems to me that he has now caught up to this developmental stage. Nowadays, he constantly puts things in his mouth, and I'm not sure if he's just exploring his environment or if it is a sensory thing.... I tend to think the latter, but honestly, I don't know. What I do know, is that a four year old boy chewing on toys and other items looks... well.... odd... and that I must constantly be watching for choking hazards, now, when we should be past it.
Excessive dribbling....
Again, so different to the girls. And again, could have been for any reason. My son dribbled alot. So much so, that I had to constantly have a bib on him right up until he was almost two, often going through two or three a day. And even then, often his shirt would be wet from dribble. I knew that some kids just dribbled more than others, and again, I thought it might just be a 'boy' thing, but it bothered me because his bibs often had pink stains on them after being washed. I have no idea why the dribbled parts stained pink after washing, except to think that maybe there was some sort of reaction of his saliva with whatever detergent I was using. He was not a refluxy baby....he never had digestive problems. Never. So it really baffled me.
He has only just recently started to keep his mouth closed for most of the day, and in the last 18 months or so, really started to be able to properly swallow his saliva so that he isn't so dribbly. I know now that all of this has to do with the neurological and motor functioning of the muscles in that oral area... his cheeks, his tongue, his throat...all of it affecting his ability to eat certain foods and to produce speech. As a baby, it struck me as unusual - especially for my children in particular - but now I know why he dribbled so much.
Stressful shopping....
Taking my son to the shopping centre was a regular occurrence for me when he was smaller. As we'd walk in - always the same entrance because I am a creature of habit - he would become very excited. It was sweet to see. Made me smile. He was happy to be there. The lights, the sounds, the smells, it was all pleasant to him. But as he got older, he began to quickly tire of it. He'd be happy at first, but after a while, he'd start whinging and crying. This baffled me. It was too early for his nap, too early for his lunch, and it wasn't like he was bored - after all, he hardly played with stuff at home, and there was heaps more to see here! I am still not too sure what the problem was, but I do remember I had to often lay him back in the pram, and place a blanket over the hood - the same way I'd set my babies up to sleep whenever I was out with them. But I was right, he wasn't tired. He would not sleep. But he would settle. He'd be quite happy just looking out the small window in the hood, or peeking through the sides. This worried me. I felt like a bad mother for 'hiding' him away.
I know my sons stims were always visual and licky. He quite enjoyed looking around at bright and stimulating things. But I wonder if it really did get too much for him? Even when I found out his diagnosis, it never made sense to me that he was overwhelmed by being out shopping, because he seemed to like it so much. So I still am not really sure why it bothered him. But one thing I do know... that reaction was not normal. My daughters did fuss sometimes when out shopping, but only if they were sick or tired. My son seemed to fuss for no particular reason. It made me wonder. Looking back, I can only reason that perhaps he was annoyed if we didn't follow the same 'pattern' when walking around. One thing that bothers him when we are out nowadays, is stopping inside a smaller type shop to look at something or make a purchase. He hates the smaller shops - feels too claustrophobic maybe? - and stopping anywhere is an issue for him. Must keep moving. I wonder if that was the case back then too. I don't remember specifics, only that I had to hide him away.
He didn't babble.....
Speech and communication was always a big one for my son. You know, when you have a baby... you hang out for the first smile... that first word...that first meaningful communication. You listen to the babble with such delight in your heart. Your little one looks up into your face and babbles a string of gibberish with such tone and inflection and excitement. You just hang out for that first real word. My son never did this. He would make noises, but never really babbled. In the early days, I was confused... I didn't really notice the difference. When I did, I thought it was another 'boy' thing. Boys make noises, girls try for words. He would make strange honking sounds, or scream. Or else he would hiss quietly. There was never an in-between, never a normal vocalisation. I remember waiting and waiting and just hanging out for that first word from him. I remember that I started getting really antsy about it by the time he was 18 months... there was nothing. Nothing at all. Not even close. I remember feeling secretly quite worried by the time we had to go for that fateful nurse check up. But again, I pushed those worries aside. I didn't trust my intuition. (But the nurse quickly rectified that). There was never any babble from Little Man. Even now, there isn't very much. A little bit, but nothing very substantial. He is four. Now that Baby Miss is babbling all day and has been for ages, I remember what real babble sounds like. Now I look back and nod.... he definitely never babbled.
He was affectionate, but in a different way.....
Little Man only ever gave affection on his terms. He would tolerate a hug or caress, but didn't really seem to savour it. Hubby agreed with the Paedie totally when she suggested Little Man went stiff or even tried to move away when someone hugged him. I disagreed with that one. But I will concede that he never seemed to 'love' it. He certainly didn't mind me hugging him. But when I'd reach out to him from across the room, he never reached back. I was lucky if he even looked my way. He never reached up from the cot or the ground when he wanted to be picked up. He never really asked for a hug in the normal way. If he liked a person, he would put his feet on them. If he wanted comfort from mum, he would lean on me. That was his way. I thought it was my fault... I wasn't taking him out enough. I was not social enough. We didn't have any friends that we really spent much time with, etc etc. I always blamed myself.
Grandpa with Erik & Josie. Josie always settled in her Grandpas' arms. Erik just looks uncomfortable.
Aversion to textures....
When I was pregnant, hubby bought a cute little squeaky teddy bear for the baby. When Little Man was born, we put it in his cot with him. It was going to be his attachment thing (yes, you can influence what that will be sometimes!). He never touched it. He liked to look at the teddy's nose - a black spot on his face. Or the patterns on his feet. When he finally did touch the teddy, it was only to flip it around and look at the patterns on his feet. He didn't like touching that teddy, or any other teddies. He cringed at a touch from the cat. When he fell over, he would fist up his hands so he didn't have to touch the grass, or carpet. He didn't like touching anything fluffy, grainy or rough. He liked to touch water, smear yogurt, touch and lick soap. Anything smooth was fine. I was sad that he didn't like the teddy. And sad that teddies and plush toys in general didn't interest him. In fact, they seemed to frighten him. I always though that was strange, and it made me sad.
Prophetic....?
I have blogged before about the
other children in my extended family who have disabilities. One thing I didn't say, was that before we found out about Little Man - when I would talk about my sisters and our children - I always felt so guilty, because I was the only one in the family with all 'normal' children so far.
So far. It was like I knew, somewhere inside that something was going to happen. I remember chiding myself one day, thinking;
I shouldn't talk like that. It sounds like I'm waiting for something to happen to us too. Then, of course, something sort of did.
Maybe somewhere inside, with all those quirks and all those questions, I really knew? Maybe I knew on the day he was born. I remember telling my mum, with a lump in my throat, that this boy had a gentle soul... a very gentle soul. But why did that make me so emotional? Maybe I knew even before he was born. For some reason, the notion that my baby might be born with some kind of problem kept nagging at me. Nipping at my heels the way an annoying dog will harrass you. I put it down to seeing my niece and nephew born with a disability. That maybe I had become paranoid or something. Funny how I never had that feeling with any of the other pregnancies. Even with the one after my son, I was only concerned that, given the statistics, our next baby might be autistic too. But even that felt different, just - I don't know, different - to what I felt when pregnant with Erik.
There were so many other things... too many little oddities to mention them all. Remembering that he never liked bubble baths, he never cried for me in the middle of the night, he never tried to climb on chairs or tables (Lord knows he does now though!), so many little things...
All I can say is, at the time, despite the odd things I noticed, I never saw a diagnosis of Autism coming. I honestly can't believe I didn't. It was so obvious. So very obvious.
xx
