Monday, March 17, 2014

You Knew

To the woman who stopped to help me mid-meltdown in the supermarket...

Dear lady,

I must apologise for not knowing your name, but I never had a chance to ask.  You may remember me; I was the mum in Safeway about four weeks ago crouched on the floor trying to settle a screaming child and surrounded by other children with stressed out faces.  I just wanted to say thank you, so much, for what you did.  You might think you didn't do anything, that you only said something, but what you said, did something for me.

You see, I could tell some things by those few words you said to me.  You came over with a trolley of your own, and a small child sitting in it.  (I didn't even get a chance to look closely enough to gauge how old your own child was, that's how deeply I was concentrating on managing my son).  You gently but firmly touched my shoulder and said:

"Excuse me ma'am, can I do anything to help?"

The way you approached, and those simple words revealed to me that you knew.  You knew what you were looking at.  You knew what it meant.  And you knew how to approach me.  And with that only, I got a little bit of extra strength - a little bit of encouragement to be reminded that I am not alone when I experience these incidents, and that I am doing ok as a mum.

Sometimes it's hard to believe that, when you are trying to manage a screaming six year old in front of dozens of people coming and going through a main thoroughfare of a busy supermarket.  I have grown a thick skin and acquired skills enough to cope with these situations - to be honest, I cope quite well when I'm in the middle of it.  But it's when I come home afterwards, that I fall apart at the seams.  In the middle of it, I am confident, calm, collected and clear thinking.  When it hits me later, I am shattered, exhausted, discouraged and sad.  Sometimes, I cry.  I can easily ignore the funny looks people might give - to be honest, I don't even look to notice anymore.  I just carry on caring for my son as best I can.  But I'm pretty sure they are there.  There are always people around who will blame me for the situation, and it's still hard not to blame myself anyway.  So encouragement from a stranger really means a lot to me.

Your offer of help was both timely and appropriate.  You were not judging me - you just saw a mum having a hard time and wanted to help.  I'm certain you knew immediately that my son was autistic and having a meltdown for whatever reason.  Even now, as I write and remember, I feel choked up inside with gratefulness,  that you got it.  You read the situation correctly.

I couldn't tell you what was happening at the time, and I happened to already have had the situation covered, but I'd like to offer an explanation now, even though you probably will never see this.

We had just come back from church, my four children and I, and I thought I'd pick up a few things for lunch and for school the next day.  My husband was away on army training for the weekend.  All we needed was bananas, apples, bread and one more thing, which I can't remember what it was now.  We didn't need a trolley for those things, just a basket.  Erik has been in a supermarket plenty of times.  He has done the full shopping with me before - it's intense, but we can do it.  He is familiar with it.  But in his mind, there must always be a trolley.  I tried to convince him the basket would do, but he would not have it.  I persisted, not wanting to lose the battle, but it escalated quickly, and it all got too much.

At some point, I have to draw a line.  It's not fair on him, and it's not fair on other patrons to the shop.  I try to be strong in teaching him things, but sometimes, I have to concede the battle, you know, for the greater good.  So I sent my oldest daughter around the corner with a token for a trolley.  Literally, just over the barrier where I could see her.  We were waiting for her to return with a trolley when you approached us.  I knew that once that trolley was here, Erik would be ok.  All he wanted was a trolley.  Shopping is not right without a trolley.  (Incidentally, I am so grateful that he doesn't insist on sitting in the baby seat anymore!)

Once we got the trolley, I had to convince Erik that it was here for him and he could sit in it if he wanted (the main part).  He wasn't to be mollified immediately though, by this point he was far too upset.  It took a few minutes, but I managed to convince him by hauling him up physically, and then he allowed me to lift him into the trolley.  He immediately stopped crying at that point.  I felt defeated, but relieved.  I went around and picked up the few items I needed, and we went to the check out and back to the car.  When I got home, I felt so emotionally drained, I had to lie in bed for a while.  Fortunately, my husband had gotten home before us, so I was able to do that.

Your offer of help blessed me so much.  Because of you, I know that the message is getting out there, or at least, I know that I am not the only one (just in case you have a child with an ASD of your own and that's how you knew what was happening).  I have been lucky to have had only one truly nasty comment regarding my son, plenty of ignorant ones and a few well-meaning but annoying people trying to help in entirely the wrong way.  But until you came along, had never had anyone genuinely helpful in a situation like this.

I will probably never see you again - truth be told, I can't even remember what you look like, Erik just commanded every part of my focus at the time.  All I remember is that you had dark hair, were not very tall, and had a small one in the trolley seat.  I just want to say thank you.  And I hope, should you ever find yourself in a situation where you need the kindness of a stranger, God sends you someone just at the right moment, with the right thing to say and do to help you.

With deepest appreciation,



Tuesday, March 11, 2014

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 :)


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*. ", 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?"

" 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....


Tuesday, March 4, 2014


Erik is the third of four children.  He has two older sisters, and one younger.  When he was born, my older girls were five and 3.5 yrs.  The little one was born when Erik was two.  Erik was diagnosed properly sometime around 2.5 years old, but we knew something was up when he was 21 months.  So I was already pregnant with Baby Miss at the time.  I hope this is not too confusing... the timeline might help paint a clearer picture...

---->  Erik born:  Big Miss - almost 5 yrs;  Miss Jane - 3.5 yrs

     ---->  21 months:    MCH points out that something is wrong.  Already 18 wks pregnant with Baby Miss.

        ---->  2 yrs 1.5 months:  Baby Miss is born; Big Miss - almost 7 yrs; Miss Jane - 5.5 yrs.

            ---->  2 yrs 7 months:   Formal diagnosis received.  Big Miss - 7 yrs, Miss Jane - 6 yrs, Baby Miss - 5.5 ms.

                ---->  Presently:  Big Miss -11.5 yrs; Miss Jane - 10 yrs; Mr Man - 6.5 yrs;  Baby Miss  - 4.5 yrs.

...or it might just add to the confusion!

Anyway, sometime along the way, the older girls came to understand that their little brother had Autism.  At some point, they grew into a realisation of what that actually meant.  I don't know when this happened, and I don't really know how this happened either.  I guess it was just a journey in getting to know him, as you would with any new baby.

Erik's first birthday.  Well before we had any idea that something was amiss, but the
signs were already there.

At times, I still feel sad for them, because they were so excited about a new sibling.  They were old enough to understand how cute babies are, how they cry and sleep, how they learn to eat and babble and walk.  But they didn't get much of this with Erik.  He hardly responded to them, and so, although they loved him, they didn't interact with him as much as I expected.  But they were ok, they had each other.  I just felt sad because I felt that they missed out on all those wonderful things that happen when a baby enters the family.  

But then, Baby Miss came along.  The girls were older again - seven and nearly six respectively - and everything we had hoped for but not found in Erik, we found in Isobelle.  The girls adored her.  There was cuddles and giggles and sharing of toys.  There was feeding and snuggles and delight at her cute antics.  It was just so different to Erik.  So terribly bittersweet.

This is what you get when you get a 7 year old
to feed a 7 month old. 
Always loved hugs with her big sister.

"Bye 'Sha, bye 'La" ...but my sweet boy is more interested in trying to lick his jacket.

Baby Miss was like a balm to my soul after the pain and grief of an AD diagnosis.  We watched her like a Hawk:  Is she responding?  Is there shared attention?  Smiles? Reaching?  Babbling?  Interest in family?  Pretend play?  Imitation?  She was a delight, but my heart was already changed after Erik's diagnosis.  It was so hard to just relax and enjoy my baby, even though I tried not to fret.

Baby Miss is 4.5 now.  She is the only one here who came into the family with an awareness of special needs already present among us.  It is all completely normal for her, from day one, and she doesn't know any different.  But she does have trouble understanding some things...

To a four year old, bigger kids are smarter.  They are more capable.  They do cool stuff - you want to be like them!  Baby Miss adores her sisters, she really idolises them.  She adores her brother too, but struggles to understand why, when she copies him, she gets into trouble but he doesn't.   Why is it that she gets in trouble when she stands on the table, but for Erik, we just quietly get him down?  Why is it that she gets in trouble if she gets out of bed to play, but we just quietly put Erik back?  Why is it that she is often left to manage eating her dinner by herself when she is tired, when Erik is tended to very closely?  It's not fair!  She is little and needs help!  She gets that he cannot speak or use the toilet, but she doesn't understand why.  She just can't seem to understand, that he doesn't understand a lot of stuff. 

The older girls from time to time have struggled with this too; that Erik seems to get away with so much, where they would have got into trouble.  It hurts them that mum can't do much to defend them when he is being annoying, and that they have to be patient of his more frustrating characteristics.  To be made to endure such injustices is a big thing to ask of children, even if they do have the capacity to understand why.  It is hard for them, and my heart breaks over the whole situation.

Trying to see the dinosaur display at our local shopping centre, but Erik was screaming and
crying the whole time, because he wanted to visit the playground instead.  It was a frustrating day,
but my girls are still smiling and trying to comfort their brother.

I know that out of this, they are learning patience, tolerance, grace and insight to the peculiar workings around special needs.  But oh, it is a hard lesson for them to be learning.  One day, it will all become clearer to them, and I trust that they won't hold these occasions against me.  I sometimes console myself by looking to the future, and knowing that I will have strong and caring daughters, who are not perturbed or intimidated by people who look or behave differently; resilient young women who already have the advantage of a skill-set unique to those who experience life with special needs.

And eventually, I'm sure that Baby Miss will get it too.  But in her very sweet four-year-old mind, all she knows right now is that "Erik doesn't learn things very easily" - her words to one of her dad's Army colleagues.  And I find that for all that she doesn't understand, she seems to have a rather decent grasp on the situation overall.


PS:  I know I don't have a great deal of readers to this blog, and that's ok.  But if you or someone you know can share how your kids came to learn about their siblings' Autism, I would love to hear about it!