Four Year Anniversary And An Old Post

Today, this blog has been going for four years.  I remember starting this blog after perusing other blogs, (most of which have not been active for a while now), and thinking it was a good way to make sense of what was happening in my life at the time.  If you look at the first post I ever wrote, I talked about how we have just found out that Erik is very likely to be somewhere on the ASD spectrum, but no formal diagnosis as yet.  At the time, I didn't want to limit my writing to just being about Autism, so I left the subject matter open to whatever I felt that I needed to jot down.  In the early days, that included a lot of your typical motherhood stuff:  Feeling overwhelmed and exhausted, trying to cope with all the things I had to juggle when the children were smaller, as well as my blossoming passion for baking and cake decorating.  Somewhere in the middle of all the craziness, I recognised that we, as a family, were beginning an important journey.  Something pivotal was happening in our lives, and things were about to change forever.  Of course, I am referring to Erik's diagnosis.  I am so glad I was able to recognise this, and so glad I took the time, where I could, to write stuff down.  Nowadays, the focus is more on this journey rather than the other things I began with.  I guess that's how these things evolve.

Look how far we've come already!  Mr Man is 6 years old, and this photo was taken at a restaurant (!!).
Of course, he was shoved in the furthest corner with the wall on one side and mum on the
other, and he still managed to escape a couple of times past the row of people down the length
of the table :)  But still... a restaurant!  Whoopee!

So, I began blogging before Erik had a diagnosis.  All I had in the beginning, was the confirmation that something was not right with my son.  The most likely explanation was Autism, but nothing was guaranteed, formally acknowledged or investigated.  So really, this blog has followed that journey from the outset.  I have learned so much about myself in this time, and various elements of the journey have become clearer.  I know I have said this before, but I truly never expected to be here, now.  This adventure continues to surprise me - in good ways and bad - and I find myself often having to find reserves of strength and mental resolve to get through.  When I look back, I am amazed, absolutely amazed at where I am.  Never in a million years did I think I could cope with the things we have been through.  But I did.  We did.  And we are still here, going strong.  My God has not left me once during that time, even when I thought I was completely alone.  Looking back, I can clearly see the hand of the Father upon my life.  And I know that were it not for His grace, there is no way I could have come through this the person I am today.  I have been unfaithful to Him, but He has been always faithful to me.  This blows my mind and humbles me.

I want to re-share a post that I wrote in March of 2011.  I wrote this about one year after the formal diagnosis, and less than two years after the actual events.  This post details the feelings and reactions that surround the day I was told, for the very first time, that something was wrong with my son.  There are earlier posts that talk about what I was feeling and going through as it happened, but being a reflective person, it usually takes a while before I can really process and recognise exactly what is going on.  Things often don't sink in enough for me to make sense of it right when it happens.  But this post, this one here, really details where it all started.  If you want to read it later or at the original source, here is the link.  But if you care to read it now or can't be bothered clicking the link, I've copied and pasted it in this post for you.

It is longish.  You might want to grab a coffee.  And maybe some chocolate :)


xx



Retrospect Part 1:  Unexpected News.

Burned into my memory forever... a day I will never forget as long as I live...

The day dawned bright and warm with a sweet cool breeze on the day I took my son to his routine 18 month MCH check. I felt a bit guilty because it was actually several weeks too late.... he was already 20.5 months old. Oh well, better late than never - right? Once inside the office, we started going through the regular stuff.... only this time, it wasn't so regular. My answers to her questions were not "Oh yes, he is doing that"; they were more like "Um... I don't really know". At first, she didn't show too much concern. Just quiet nods and a gentle "ok" was the nurse's response. I started to feel a bit embarrassed about my answers. I couldn't definitively say yes to anything, really. I felt stupid, or worse - neglectful - like I didn't know my own son....

"Does he look at you when you call him?"

"Well, no, not really. But I think that's because he doesn't know his name yet".

"Oh! Doesn't he recognise his name?"

"Um, I'm not sure. But we call him 'Mr Man' all the time anyway... maybe that's why."

"Oh, ok! Does he respond to that then?"

*Pause; Think*. "Well....no, not really"

"Ok. ... And how many words do you think he says?"

"Oh, he says maybe.... um....3 or 4 I think?"

"No more than that? Ok, that's ok. What are they?"

"Um... come to think of it, I can't recall what they are specifically now". *Chuckle; Pause; Think*."Now that you mention it, I can't really think of any. - Oh, he said 'Leila' the other day! We were all at the dinner table, and I was calling out the girls' names to try and get him to learn them. And he said 'Laay-lahh' just the same as we said it"

"Oh, ok good! And has he said it much after that?"

"Well, no, he hasn't said it at all since then."

"Oh, ok. And you can't think of any other words he says? Anything at all? Even sounds for things? Maybe 'ba' for ball or something?"

"No. Ohh... he says 'this' and 'that'. He says them alot!"

"...'This' and 'that'....", she writes in her notes.

"Yeah, it's cute. He goes 'dsss dsss' 'dsss datt'". I am feeling a bit better now. She looks up at me....

"Good! And does he say them when he points at things? ... Or when you point at things?"

"Ah...no. He just sort of says it as he walks around. He never looks when I point actually."Embarrassed again.

"Oh. Ok."

Basically, she became more and more surprised at his lack of development. At that age, he should have been saying around 5 words. If no words, then he should have been understanding simple commands at least, like 'get your shoes' etc. But he didn't. He wasn't pointing or using gestures. He didn't look when I pointed at something to show him. He wasn't climbing up and down chairs or the couch. He wasn't taking his own shoes and socks off. Wasn't using a spoon, and was only using a sippy cup. Didn't point to his eyes, nose, etc. Could not scribble - wouldn't even hold a crayon. Turned pages in a book, but would not point at pictures or listen to a story.

In fact, all he would usually do, was walk around. Just walk around. He hardly played with his toys, and when he did, it was the same ones and he wasn't rowdy. He preferred to do a simple puzzle or sort shapes. He never played with his trucks and cars. He had a little train that he adored though. It popped balls out around it's top and drove around with music. He would pop balls into it and watch them come back out for ages. He never pretended to make me a cup of tea, eat food, or talk on the phone. I argued that he hadn't really watched me do those things, so maybe that's why he didn't learn? His eye contact was there, but it was fleeting. He didn't really respond to his name. The list went on.

I began to feel as though I had neglected my son very badly. Why hadn't I taken the time to teach him this stuff?

At the time, it never occurred to me that I didn't exactly sit down and 'teach' this stuff to my daughters.... they just did it. They simply learned by watching and imitating me. This was confirmed to me just the other day when we found the Baby Miss (16 months now) shuffling around on her bottom and babbling into a toy phone. Out of all my children, I have spent the least amount of time with her, and I certainly never sat down to specifically show her what I do when I use the telephone. She just watched and noticed and learned. My son, on the other hand, didn't even pay attention.

We moved on to the physical checks.... height - in the 90th percentile; weight - also in the 90th percentile; head circumference - completely off the charts! He was a big boy for his age. He was going to be tall and solid, like his papa... I was so proud. He was upset for the whole thing, and when we came to weigh him, we couldn't keep him on the scales, he was that upset. I sang a song from one of his favourite dvd's to distract him. The nurse thought that was clever. The dental check was fine, but he dribbled alot... and I mean alot. So much so, that I still had to keep a bib on him all the time. Must be a boy thing, I thought.

We came back to the desk to chat. Very gently, the nurse told me that my son was not meeting enough milestones, and it was a matter of concern. She said that there were early signs of autism, and that he would have to be closely monitored. She showed me the autism/developmental delay checklist given to all nurses and pointed out all the places where he was meeting the criteria. She strongly suggested I see a paediatrician. She told me it was entirely up to me, but that it would be good, even if just to rule out autism or anything else. All the while, I smiled and nodded. I was completely unconcerned. I thought:This lady is a bit paranoid I think. Every child is different and develops at different rates. Surely he is just being a boy - he's different to the girls. I was completely unruffled, but I like to be informed and I like to know stuff. So I agreed to a referral for a paedie check.

I went home thinking I had interesting news for my husband. I hoped he would not freak out. I was still unconcerned, but thoughtful now. Very thoughtful. I kept thinking about that checklist. All afternoon, I would glance at my son, and wonder... shake my head... go back to what I was doing... glance at him again.

I didn't realise at the time, but something changed that afternoon. I began to look at my son differently, I could not help it. This was a pivotal point in my journey.

With everything he did, I wondered; Is this normal toddler behaviour, or an autistic thing? When my husband came home that night, my SIL also came over for a quick visit. I broke the news to them very offhandedly ... I think on the surface, I still wasn't too concerned, although my mood had settled into a deep and quiet melancholy. After all the children were in bed that night, the three of us were in the lounge room just talking. My hubby and his sister began talking about what the nurse had said. My SIL worked in an autism specific school, and had been there for quite some time before our little man was even born. Coincidence? Providence? I don't know. They discussed my son's symptoms and compared him with other autistic children. It was just a discussion, something to be fully expected when information like this is presented to you about your child. Discussion happens, and must happen if we are to remain in a healthy emotional state.

I sat quietly, listening, but not participating. Inside, my emotions began to roil. I became angry, very angry at what they were saying. They were discussing this as if the boy had already been diagnosed. I was livid. I sat quietly, trying to control my ire. All I wanted to do was slap them both and tell them to shut up. Just shut up! Don't you realise this is my son you are talking about? You're talking like he has autism for sure, but we don't know anything yet!! I was so mad, I felt sick. Fortunately, sensibility dominated my anger, and I didn't say anything. They weren't actually doing anything wrong, it was just the thoughts of the day all beginning to settle in for me. I'd had all day to ponder this, while they had only just been informed. I excused myself and went to my room.

I cried myself to sleep that night. I wept and wept and wept. I felt sick inside. I could not sleep properly all night. Every time I woke up, I would think about it and feel sick. Several times, I went into my sons room, just to stare at him while he slept, weeping, and praying. Please God, please.... this can't be happening. She has to be wrong.... she has to be!

Looking back on that day, I can see how the idea that something was wrong with my son took a bit of time to sink in, but when it did, my perspective of him changed forever. I was grieving. It was horrible not knowing, and just wondering all the time - is this a normal thing or is it an autistic thing? It was traumatic, the way I would swing from; No, he can't have it - look what he's doing? Autistic kids don't do that, do they? to; He's got it for sure... oh dear God, he's got it for sure. It was grief, and the thing that broke my heart the most, was that no matter the outcome, I will never be able to look at my son the same way again. Oh, he was still my son - and he always would be no matter what. But he was no longer the son I thought he was. I lost something that day.... the innocent expectation of a normal life for him, and for us. It was most definitely grief.

I felt gutted, shattered, lost, confused, vulnerable, afraid, angry, depressed. I was a mess.

The next day, my son decided to climb up and sit on the couch. He did this right in front of me. I was over the moon. No! He's fine! He just doesn't do things until he's sure he can do it, then he just up and does it! The nurse rang me that day to see how I was doing and to let me know she had sent a referral off for a paedie appointment. It would be four months before I could get in to see her. I told her about the couch incident, and she was pleased. "Good!", she said, "lets hope he picks up a crayon and starts drawing next!" He didn't.

The next four months were among the most traumatic of my life. Waiting was torture. But I put away my impatience, and resolved to spend more time with my son to build those skills into him that I had obviously failed to do before.

I still cried. Alot. In private. My husband didn't seem perturbed, so I didn't want to burden him with my emotional breakdown. I tried to keep it to myself. In a way, I felt like my life just stood still at that time. But life never does. It went on. And so did I....



xx

It's The Big Ones That Count!

Brushing Erik's teeth has always been a challenge.  We manage to do it, but even from the outset, it has evolved much differently to the girls.  These days, I need to practically get him into a headlock with one arm, fighting off (or desperately trying to hold down) his arms with that same hand and brush his teeth with the other!  It is very difficult - fast becoming impossible - for me.  I have considered employing the use of a straight jacket at times.....

As a toddler, getting anything into his mouth was extremely difficult, and to be honest, dental care was not high on my priority list in those early days.  Toilet training and speech development was.  I had a lot to deal with at that time:  A new diagnosis and a newborn baby - both those things are enough all on their own.  So teaching Erik to brush teeth was not hugely important.  I never expected him to have sensory issues around it.  There was a lot I had yet to learn about Autism and it's many manifestations.

But it didn't take long for me to recognise that Erik had sensory issues to do with his mouth.  The first and most apparent thing, was his aversion to anything rough, crunchy, chunky - basically anything other than smooth and uniform textures.  This first became obvious with his eating habits, and later, with the things he would choose to mouth on.  He never chewed things at first, he would just lick smooth surfaces.  Basin rims, windows, table tops, smooth plastic toys...soap.  No wonder he couldn't stand having a toothbrush in his mouth!

I began the process of desensitising him a few months after diagnosis.  With advice from our speechie at the time, I began by rubbing a wet finger along his gums, being super careful to stay away from any biting! (This was no problem at first though, he never did go for a bite).  What he did do, was vigorously push my hand out of his mouth and away.  But it didn't take long before he would tolerate this - maybe a couple of weeks?  I started very, very small... only a couple of seconds at a time.  As much as he could handle.  As soon as he resisted it was over.  I didn't want to make it an unpleasant experience.  

I was supposed to then advance to using a face washer to rub over this gums, but I found this to be very impractical.  He didn't open his mouth wide, and the washer would really limit movement around his gums and was just too chunky to fit in there.  So I scratched that idea.  As chance would have it, this was the time he started picking up items to mouth on as he was playing.  I grabbed this opportunity with both hands!  Using a baby toothbrush - the silicon kind with a few little bumps on it - I introduced him to a new toy to mouth on.  At first, he didn't take to it - he is always initially averse to new ideas - but it wasn't long till he did.  

As he mouthed on this object, I would come along and move it gently around his teeth once in a while.  After this, we graduated to the silicon 'brush' - just like a regular toothbrush, but the bristles are silicon, so much softer than the normal bristles.  And of course after this, came the normal, toddler toothbrush.  At this point, he was allowing me to brush his teeth for him - an amazing achievement!  He would have been about 3 1/2 at this point, so it took the better part of a year to get there.

Introducing toothpaste was no big deal!  I was very lucky that Erik didn't have a problem with the taste of it - but then, I'm not sure I should have expected differently when he would happily eat soap, just for the texture!  But we started with the thinnest swipe over the bristles anyway- he did notice the difference, but it didn't deter him at all.  So I was able to increase the amount to the right size within a couple of weeks.  There was, and still is, no such thing as 'rinse and spit'.  Erik cannot spit.  Or blow bubbles - a similar activity from a motor planning perspective.  So, reminiscent of the very first finger swipe, I wet my fingers and swipe them around his teeth to wipe off as much of the toothpaste as possible.  These days, I have to be very careful of a bite - and it has happened more then once!

All went well for a while...Erik would allow me to brush his teeth, and then he would have a turn.  He would only ever brush the left bottom side though, and getting him to try other areas was a problem.  I think mostly because of motor planning.  But as time went on, instead of getting better, it just got worse.  

I don't know if his sensitivities increased, or what exactly it was that caused it, but little by little, he began to fight me as I tried to brush his teeth.  He would push my hands away and press his mouth shut so I couldn't get the toothbrush in.  But it was strange, he would do this at random.  That is, at first, he was fine with the idea and would allow me to get started, but in the middle of brushing, he would just suddenly rebel.  I could never pinpoint what it was that prompted this - whether it was brushing a certain spot, or length of time, or what.  It was a mystery.  He also stopped trying to brush his own teeth - playing with the brush instead and never actually getting it into his mouth.  Eventually, I skipped that part altogether and just insisted on brushing them myself.  Time constraints came into this too, having to get all children ready for school/daycare in the morning, I just didn't have time to diddle around waiting for him to be ready when he might not be for hours.

And so at this point, things are still pretty much still there.  Occasionally, he will try to brush his own teeth (for a little bit).  He comes willingly to the bathroom to get his teeth brushed - partly because of routine, and partly because, I guess,  he really doesn't mind too much.  It's almost an automatic or involuntary reaction for him to push the brush out of his mouth.  Although it's frustrating, I still think he does well to allow us to brush his teeth at all.  Some days are better than others - on some days, he can barely tolerate a swipe across each side.  Other days are much better.

I have learned now that he does best with the lower jaw.  The upper jaw he struggles with, and the top front incisors on the outside are the worst.  He fights me every time, he can't stand it.  I feel so sorry for him.  But we must be doing something right, because a dental checkup by the school dentist revealed that his teeth are in very good condition with no work needed.  Win!

Check out those pearly whites :)   I just wish he'd stand still for a minute so I can take a non-blurry photo!

This year, I expect to see him lose his baby teeth.  That will be interesting!  I have no idea whether he will spit them out or swallow them!  And I am concerned about the effect the loose teeth will have on brushing.  I guess we'll cross that bridge when we come to it.  He is getting bigger and stronger, and it is becoming very difficult for me to hold him steady enough to brush his teeth.  I really hope that the habits we have worked hard to instill will take over so that we can continue care of his adult teeth when they come through.  No holes so far, but they are just baby teeth.  It's the big ones that count!

xx

Retrospect: Part 3 - Questions And Quirks

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

Retrospect: Part 2 - The Paedie Visit

Grab a cuppa and get comfortable. This is a long read..... :)

From the day I visited the nurse in May, to the day we finally saw the Paedie in July, life truly was a roller coaster. One moment I was fine, handling things and feeling positive about whatever the future held. The next minute, I'd be in my room weeping and grieving over my son. I just found it so hard to put into words what I was feeling. I felt guilty over being upset. And I was still just shocked that this was happening to us - to my son... in my family. I mean, hadn't we had enough already? One little niece with multiple disabilities, already passed away and her baby brother born with the same terminal prognosis, and another little nephew with Down Syndrome? Now my son too? What is going on here? Has God cursed us? Have we done something terrible to deserve all this?

Look at those two darling faces :)

I know now that this is no curse, but a precious blessing - that we have been sent these amazing children because we have this capacity to support, love and cherish all of them throughout their exceptional lives.

Very tentatively, I began to share a little of my heart with my husband. I had not heard much from him, though I was certain that he was not completely without emotion. He just handles things differently. But I was keen that we take this on together, supporting each other. I really needed his support and was worried that he needed mine but hadn't said anything. As it turned out, he was upset over it, but refused to emotionally commit to anything about it until there was a firm diagnosis. In other words, he would not allow himself to think about it too much at this stage, because to him, there was no point - we knew nothing for sure.

This was SO different to how I was handling it. I had to think about it. All the time. I could not help myself. I needed to be saturated with the whole deal so I could process things. Although it seemed to me that my husband just didn't really care one way or another, in my heart, I knew better. He cared, he just had a different way of working it through. That was ok with me. But I felt that my ability to share with him was limited because of it. He obviously did not want to be talking about it all the time, whereas I needed to. So we talked a little. Mostly at night as we went to bed, or in the car to various appointments for our son.

I would mostly tell him how I felt about things, and ask if he had considered whatever it was I was talking about. I told him where I needed his support. He tried his best, and I appreciated that. But to be honest, it just wasn't enough. Nevertheless, I didn't want to just dump all my emotional mess on him where he was trying to keep his emotions all dormant for the time being. It wasn't fair.

I tried to seek comfort in family and some friends. I had no shame in discussing it. This was my son, and I loved him. And this is just the way things were. People were very sympathetic, but so many times I got responses that just made me shake my head in confusion and disbelief. Some of the common ones:

I really think it's just his hearing.... he has hearing problems. Get his hearing sorted and you'll be fine.
Ahh, we already had his hearing checked - it is the first thing they do.

No, he's fine Viv, just a bit slow that's all. He'll catch up, don't worry.
I hope that is the case, but I really doubt it. There is something more at play here. And wouldn't you worry if it was your son?

Stop worrying, he is fine.
Don't tell me to stop worrying. How can you even expect me to NOT worry? The next person to tell me to stop worrying is going to get a slap!

Oh, I knew a kid who didn't talk till they were 3/4/whatever, and they are fine now.
That's nice for them, but there is more going on here than just a lack of speech.

You know you have to stop immunising him now, don't you?
Er.... why don't you just take this knife right here, and stab me instead? It would be less painful.

You've just spoiled him. You've become a typical Arabic mum who adores her son and will let him get away with murder.
People! Please! Wait patiently for your turn with the knife! There is plenty of me for everyone to shred to pieces.

Ahh, yes. It was not an easy time. By any means. And sometimes the most hurtful comments come from the most unexpected people.

I was so quick to snap this picture up, because he never used to look at books! This was so rare, and in fact, I never really saw him do this again. All he was doing though, was staring at the one page he had open.

The day finally came for the long awaited paedie visit. In the waiting room, our little man was not interested in the box of toys provided for waiting children to play with. Instead, he kept running to the automatic doors to try and escape. We were finally called in by the Paedie.

On the way into her office, she bent down to address our boy - and very loudly I might add.

"Hello Erik. Hello Erik."

He totally ignores her, more interested in looking around and trying to run away.

"Erik, hello. Can you shut the door please Erik? Erik, shut the door."

Still no response.

I am not embarrassed this time. This time, I am grumpy with the paedie. Isn't it obvious that he isn't going to respond? Stop pestering him, the whole waiting room is staring at us! He isn't going to respond. Leave him be!

We went inside the office and the paedie brought out a box of toys for our boy to play with. He didn't even look twice at it. It was like he didn't notice it. We seated ourselves and began introductions. She started by asking us what concerns we had that led us to see her. The whole time, our son just walked around the room in the same pattern. Occasionally he would walk around our chairs. He would also make this strange sort of honking 'aaahhhh' sound. Over and over. The paedie asked me what that meant. I told her it was a sound he makes when he is happy. He certainly seemed happy enough to be in there, though I had my doubts about the genuineness of it. Looking back now, I think it was more a sound of anxiety than happiness. He was nervous, and that was how he expressed it.

She went on to ask a myriad of questions, fill out a questionnaire, and even conducted some simple tests to observe what our boy would do in certain situations - like showing him certain toys, or blocking a part of the pattern he was walking. After what seemed like forever, she finally shared her thoughts with us.

There was definitely something wrong. She couldn't say specifically what, but she suspected either Autism or Developmental Delays, but she was more inclined towards Autism as a diagnosis - he's definitely on the spectrum somewhere. We had to go for more specific testing to confirm though.

My heart sank and my chest felt tight. I felt sick to my stomach. Hot tears stung my eyes and started rolling down my cheeks. I had known this was a very real possibility. But to hear from a nurse is one thing. To hear from a Paediatrician, is another. I had a feeling inside, that I could only describe as something clicking shut. There is no way out now. No chance it might be something less serious. The last little bit of hope I had was now gone.

She asked me if I was alright. Tears streaming down my face, I laughed and said no. I'm not. I'm not alright. But I will be. I couldn't really say how my husband reacted or what he felt. He keeps his emotions well under control, and I was just swept away with mine.

I have to say, the rest of the afternoon was a blur. I don't remember leaving, or getting in the car, or arriving home. I don't actually remember anything in the short period that followed, so I'm guessing that based on what I know about myself, I fell into a deep depression. I probably carried on as normal - what else could I do? But because I don't remember, I think I must have just been walking around like a brainless zombie. Not all there. Lights on but no one home. In a surreal kind of numbness, where the pain is just there, but I won't touch it for fear it will cripple me completely. I couldn't afford that. I had a family to care for, and another child in my womb to consider. I had to keep it together in so many ways. That was hard. Really, really hard. I wished that someone would just give me permission to fall apart and carry my load while I went to pieces for a while. But nobody did.

One of his favourite things to do was post the tokens into the slots in Connect Four. It still is, and I have to hide the game to save meltdowns. It only comes out at very special times for him now.

The next step was to get some blood tests done and wait to hear when our diagnosis appointment would be. That took months to happen. In the meantime, we set to organising early intervention and speech therapy for our boy, as we were told we didn't need a diagnosis to get started. We were lucky enough to get plugged in to services in a relatively short time. It was good because it allowed us to focus on helping our boy rather than the frustration we felt at having to wait for a formal assessment. Because regardless of what the final diagnosis was, his needs had become obvious, and would remain the same.

At this point, I feel that my journey had begun the slow transition from shock and grief to sadness and acceptance. I still grieved, but having a more solid picture of the situation allowed me to move on from the dizzying confusion of limbo land. My son was somewhere 'on the spectrum'. I had new bearings now, so it was time to strike out on a different path. One that has, so far, turned out to be more colourful than I imagined.



xx

Retrospect: Part 1 - Unexpected News.

Burned into my memory forever... a day I will never forget as long as I live...

The day dawned bright and warm with a sweet cool breeze on the day I took my son to his routine 18 month MCH check. I felt a bit guilty because it was actually several weeks too late.... he was already 20.5 months old. Oh well, better late than never - right? Once inside the office, we started going through the regular stuff.... only this time, it wasn't so regular. My answers to her questions were not "Oh yes, he is doing that"; they were more like "Um... I don't really know". At first, she didn't show too much concern. Just quiet nods and a gentle "ok" was the nurse's response. I started to feel a bit embarrassed about my answers. I couldn't definitively say yes to anything, really. I felt stupid, or worse - neglectful - like I didn't know my own son....

"Does he look at you when you call him?"

"Well, no, not really. But I think that's because he doesn't know his name yet".

"Oh! Doesn't he recognise his name?"

"Um, I'm not sure. But we call him 'Mr Man' all the time anyway... maybe that's why."

"Oh, ok! Does he respond to that then?"

*Pause; Think*. "Well....no, not really"

"Ok. ... And how many words do you think he says?"

"Oh, he says maybe.... um....3 or 4 I think?"

"No more than that? Ok, that's ok. What are they?"

"Um... come to think of it, I can't recall what they are specifically now". *Chuckle; Pause; Think*. "Now that you mention it, I can't really think of any. - Oh, he said 'Leila' the other day! We were all at the dinner table, and I was calling out the girls' names to try and get him to learn them. And he said 'Laay-lahh' just the same as we said it"

"Oh, ok good! And has he said it much after that?"

"Well, no, he hasn't said it at all since then."

"Oh, ok. And you can't think of any other words he says? Anything at all? Even sounds for things? Maybe 'ba' for ball or something?"

"No. Ohh... he says 'this' and 'that'. He says them alot!"

"...'This' and 'that'....", she writes in her notes.

"Yeah, it's cute. He goes 'dsss dsss' 'dsss datt'". I am feeling a bit better now. She looks up at me....

"Good! And does he say them when he points at things? ... Or when you point at things?"

"Ah...no. He just sort of says it as he walks around. He never looks when I point actually." Embarrassed again.

"Oh. Ok."

Basically, she became more and more surprised at his lack of development. At that age, he should have been saying around 5 words. If no words, then he should have been understanding simple commands at least, like 'get your shoes' etc. But he didn't. He wasn't pointing or using gestures. He didn't look when I pointed at something to show him. He wasn't climbing up and down chairs or the couch. He wasn't taking his own shoes and socks off. Wasn't using a spoon, and was only using a sippy cup. Didn't point to his eyes, nose, etc. Could not scribble - wouldn't even hold a crayon. Turned pages in a book, but would not point at pictures or listen to a story.

In fact, all he would usually do, was walk around. Just walk around. He hardly played with his toys, and when he did, it was the same ones and he wasn't rowdy. He preferred to do a simple puzzle or sort shapes. He never played with his trucks and cars. He had a little train that he adored though. It popped balls out around it's top and drove around with music. He would pop balls into it and watch them come back out for ages. He never pretended to make me a cup of tea, eat food, or talk on the phone. I argued that he hadn't really watched me do those things, so maybe that's why he didn't learn? His eye contact was there, but it was fleeting. He didn't really respond to his name. The list went on.

I began to feel as though I had neglected my son very badly. Why hadn't I taken the time to teach him this stuff?

At the time, it never occurred to me that I didn't exactly sit down and 'teach' this stuff to my daughters.... they just did it. They simply learned by watching and imitating me. This was confirmed to me just the other day when we found the Baby Miss (16 months now) shuffling around on her bottom and babbling into a toy phone. Out of all my children, I have spent the least amount of time with her, and I certainly never sat down to specifically show her what I do when I use the telephone. She just watched and noticed and learned. My son, on the other hand, didn't even pay attention.

We moved on to the physical checks.... height - in the 90th percentile; weight - also in the 90th percentile; head circumference - completely off the charts! He was a big boy for his age. He was going to be tall and solid, like his papa... I was so proud. He was upset for the whole thing, and when we came to weigh him, we couldn't keep him on the scales, he was that upset. I sang a song from one of his favourite dvd's to distract him. The nurse thought that was clever. The dental check was fine, but he dribbled alot... and I mean alot. So much so, that I still had to keep a bib on him all the time. Must be a boy thing, I thought.

We came back to the desk to chat. Very gently, the nurse told me that my son was not meeting enough milestones, and it was a matter of concern. She said that there were early signs of autism, and that he would have to be closely monitored. She showed me the autism/developmental delay checklist given to all nurses and pointed out all the places where he was meeting the criteria. She strongly suggested I see a paediatrician. She told me it was entirely up to me, but that it would be good, even if just to rule out autism or anything else. All the while, I smiled and nodded. I was completely unconcerned. I thought: This lady is a bit paranoid I think. Every child is different and develops at different rates. Surely he is just being a boy - he's different to the girls. I was completely unruffled, but I like to be informed and I like to know stuff. So I agreed to a referral for a paedie check.

I went home thinking I had interesting news for my husband. I hoped he would not freak out. I was still unconcerned, but thoughtful now. Very thoughtful. I kept thinking about that checklist. All afternoon, I would glance at my son, and wonder... shake my head... go back to what I was doing... glance at him again.

I didn't realise at the time, but something changed that afternoon. I began to look at my son differently, I could not help it. This was a pivotal point in my journey.

With everything he did, I wondered; Is this normal toddler behaviour, or an autistic thing? When my husband came home that night, my SIL also came over for a quick visit. I broke the news to them very offhandedly ... I think on the surface, I still wasn't too concerned, although my mood had settled into a deep and quiet melancholy. After all the children were in bed that night, the three of us were in the lounge room just talking. My hubby and his sister began talking about what the nurse had said. My SIL worked in an autism specific school, and had been there for quite some time before our little man was even born. Coincidence? Providence? I don't know. They discussed my son's symptoms and compared him with other autistic children. It was just a discussion, something to be fully expected when information like this is presented to you about your child. Discussion happens, and must happen if we are to remain in a healthy emotional state.

I sat quietly, listening, but not participating. Inside, my emotions began to roil. I became angry, very angry at what they were saying. They were discussing this as if the boy had already been diagnosed. I was livid. I sat quietly, trying to control my ire. All I wanted to do was slap them both and tell them to shut up. Just shut up! Don't you realise this is my son you are talking about? You're talking like he has autism for sure, but we don't know anything yet!! I was so mad, I felt sick. Fortunately, sensibility dominated my anger, and I didn't say anything. They weren't actually doing anything wrong, it was just the thoughts of the day all beginning to settle in for me. I'd had all day to ponder this, while they had only just been informed. I excused myself and went to my room.

I cried myself to sleep that night. I wept and wept and wept. I felt sick inside. I could not sleep properly all night. Every time I woke up, I would think about it and feel sick. Several times, I went into my sons room, just to stare at him while he slept, weeping, and praying. Please God, please.... this can't be happening. She has to be wrong.... she has to be!

Looking back on that day, I can see how the idea that something was wrong with my son took a bit of time to sink in, but when it did, my perspective of him changed forever. I was grieving. It was horrible not knowing, and just wondering all the time - is this a normal thing or is it an autistic thing? It was traumatic, the way I would swing from; No, he can't have it - look what he's doing? Autistic kids don't do that, do they? to; He's got it for sure... oh dear God, he's got it for sure. It was grief, and the thing that broke my heart the most, was that no matter the outcome, I will never be able to look at my son the same way again. Oh, he was still my son - and he always would be no matter what. But he was no longer the son I thought he was. I lost something that day.... the innocent expectation of a normal life for him, and for us. It was most definitely grief.

I felt gutted, shattered, lost, confused, vulnerable, afraid, angry, depressed. I was a mess.

The next day, my son decided to climb up and sit on the couch. He did this right in front of me. I was over the moon. No! He's fine! He just doesn't do things until he's sure he can do it, then he just up and does it! The nurse rang me that day to see how I was doing and to let me know she had sent a referral off for a paedie appointment. It would be four months before I could get in to see her. I told her about the couch incident, and she was pleased. "Good!", she said, "lets hope he picks up a crayon and starts drawing next!" He didn't.

The next four months were among the most traumatic of my life. Waiting was torture. But I put away my impatience, and resolved to spend more time with my son to build those skills into him that I had obviously failed to do before.

I still cried. Alot. In private. My husband didn't seem perturbed, so I didn't want to burden him with my emotional breakdown. I tried to keep it to myself. In a way, I felt like my life just stood still at that time. But life never does. It went on. And so did I....



xx

Retrospect: The Early Days

Lately, I have been thinking about the time when our son's problems were first brought to our attention. It wasn't that long ago in the scheme of things, but it seems like ages. I realised that although I have been blogging since before his diagnosis, I have never really talked about those very first weeks and months in detail. I suppose I was taken with things that were more attention-demanding at the time. Things like appointments and meetings and paperwork and such. It has been nearly 2 years since the nurse first told me he was not making his milestones, but less than 1 year since his formal diagnosis. It is my intention to post more about those early days in retrospect. We usually see things alot clearer in retrospect. It is my hope that these posts might encourage, comfort and reassure anyone who finds themselves in the same 'early days' place. I also hope that it might enlighten people who are otherwise unaware of what many parents go through when they find out their precious child is not..... normal.

A brief disclaimer here; I realise that the use of the word 'normal' can rile some people up quite considerably. It is not my intention to upset anyone. Like everyone, I have an opinion on this, and will probably blog a more specific post about it later on. Until then, I hope my use of the word will be accepted, or at the very least, tolerated by those who might otherwise be averse to its use.

Stay tuned for the retrospect posts.


xx