A Stranger In The Waiting Room

A couple of weeks ago, I was out in the waiting room of a clinic, waiting for our appointment with the doctor.  Nothing serious, I just needed him to check a bump on the Baby Miss's head.  She had a nasty fall last November, and although the lump healed well enough, I noticed that I could feel a small bump under her skin and was worried.  Turns out it is nothing but scar tissue and won't get any bigger or cause any problems.

Anyway, Baby Miss made herself busy playing with the activities provided there, as I sat down to wait.  Almost immediately, I noticed a young man who was sitting opposite me and to the left.  My heart caught in my throat as I looked at him.  He reminded me so much of my son.  So much.  It was like seeing a vision of the future.

This young man stood out from everyone else, to me at least.  He was quite tall, I could tell that even with him sitting.  He looked somewhere between 18 and 22 years old.  The clothes he was wearing, were not the sort of thing you would expect to see on young adults these days.  Clean, but worn and very basic in design.  Black trackpants with double white stripes down the sides - a little too short for him, and a plain light blue t-shirt.  Short socks and runners.  His hair was not styled in any particular way, it was just a normal sort of cut.  Kind of curly.   Not short in the strictest sense, but certainly not long either.  Even if he were from a financially struggling background, you would not expect to see a young person so plainly dressed.

But more than his attire, it was his demeanour - his manner - that captured me.

The way he sat, the way he moved his hands and placed his fingers, the way he looked around.  The slackness around his cheeks.  And the occasional smile and talking to himself quietly.  To me, he was very sweet to look at.

Now, I can't say for sure, and I certainly don't wish to offend anyone by assuming anything; but I would have loved to know if this young man was autistic.  Desperate to know, actually.  There was just something about him that struck me so.  I wanted very much to go over and ask.  And if he answered 'yes', I wanted to ask a million things more:

When did you learn to use the toilet?  If it took you a long time to learn, what went through your mind in regards to it?

Did you ever abscond from parents/home/teacher/carer?  If so, what were you thinking!?

Can you drive?

Do you work?

Can you write?

Can you cross the road by yourself?

Do you shave yourself or does someone help you?

Can you brush your teeth?  Oooh!  - do you go to the dentist?


Oh, so many personal and terribly inappropriate questions, I wanted to ask!  But instead, I sat quietly (well, as quietly as I could with a sparkly four-year-old!), and entertained my daughter as we waited for our turn with the doctor.

Finally we were called in, and I took the Baby Miss and left the waiting room.

I often think about what things will be like as my son gets older;  How he will look, if he will be able to speak, who will shave him or shower him as the case may be, what he will do with his life, what we will do with ours.  I don't worry about it, and I try not to dwell on it.  But it would be remiss of me as a parent if I did not think of the future ever and try to make plans for our lives.  I have no idea what will become of us.  None whatsoever.  I can only hope that my son is happy and fulfilled in his life, whatever he chooses to do (or we choose for him if he cannot).  I can only hope that as he grows up and my husband and I grow older, that he is able to take on more of his own care and live an independent life.  I can only hope that when we are gone, he will be ok.  Of course he will always have his sisters to help and care for him, but I would rather them not have to become his 'carer' as such.   I already know they would not mind - they love him so much.  But they deserve to be able to chase their own dreams and make their own lives without having to shoulder that responsibility.  And whatever happens, I know that God's got him.  He will never leave him.   And should any disaster befall, I know that my son won't be autistic in heaven anyway.  None of that will matter up there.

In truth, I know absolutely nothing about this young man who struck me so profoundly.  Nothing at all.  But seeing him certainly evoked the vision of a potential future for my son.  I don't think I will forget this stranger for a very long time.



xx

I Want To Tell You...

Dear Erik,

You blew my mind yesterday son, did you know that?  I bet you didn't, because I didn't really express my excitement as much as I wanted to.  I worry about freaking you out a little bit with an overreaction, so I tend to keep a reign on my excitement when you do something awesome.  I tell you quietly and privately that that thing you did was very good, when really what I want to do is jump up and down like a maniac, and whoop and holler to the whole world.

Yesterday, two things happened that made me smile and reminded me of the inextinguishable little flame of hope inside me; that one day, I will hear you speak proper and true.

The first thing, I wasn't even there for.  I heard it from your aunty, who works at your school, but I believe every word anyway.  There was a change in the buses at school and you were to take a different bus home.  Different bus, but same route.  You were the kid who flipped out over having a different bus.  You were the one screaming and fighting and trying to run off.  While it breaks my heart to know that you were so distressed over the changes, your aunty tells me that you said something to all those people who were trying to convince you to get on that bus:

"No! No!  Wrong bus!"  You cried.

When I heard about this, it took my breath away, son.  You, finding those perfectly appropriate words and speaking them out in a perfectly appropriate situation, has left me speechless.   And I still can't find the words to express how I feel, knowing you. said. that!

You escaped the grip of the teachers and aides around you and ran to your aunty, whom you recognised among the group of people around, and threw yourself into her.  This too blows my mind honey;  You went to the most familiar face for help and comfort!  And yes, she was able to get you calmly on to that bus.  By the way, I have to say, you still didn't look too impressed about the whole situation when I picked you up.  Cutie.  But oh, my darling, if you only knew how much those words mean to me.  You said that;  you really said that!  Amazing!

The other thing that happened was at dinner that same night.  We have had a different flavour of cordial lately, and you decided it is the wrong colour and you would not drink it.  So earlier that day I bought you the flavour/colour that is familiar to you, and made up a small jug of cordial just for you, so you didn't have to have water when the rest of us had cordial at the dinner table.  You babbled a few things, and then asked for 'poodiyoh' as we have been practicing lately.  But when I reached for the little jug instead of the usual one your cordial is served in, you quietly but clearly said;  "I don't want that", and made me put it down again.

Your aunty happened to drop by and had stayed for dinner with us, and you should have seen her face.  It reflected just exactly what I felt inside;  gobsmacked, delighted surprise.  But instead, I responded to you as I might respond to one of the girls when they say something like that;  "Oh, you don't want that one honey?  But it doesn't matter what the jug looks like, it's what's inside that matters.  This is the cordial you like.  Let me pour it for you".  You let me.

My son, you made my day, you made my night.  You will never know how much your beautiful words mean to me.

Those two sentences that day are so much more than mere words.  They tell me that you understand what is going on around you, more than I often give you credit for.  They tell me that you have more words in your head than you can get your mouth to make.  They tell me you know how to put together a sentence, even if you can't make it come out of your mouth, or on the iPad.  And they tell me that the ability to speak is there, even if it is still very tiny and you are struggling with it a lot right now.

You totally blew my mind with these things, and I am so in love with you my darling boy.

One more thing honey;  Did you know that your name means 'Ever ruler' or 'Always conquerer' ?  Well it does.  And I don't think it is by accident that we named you this.  I remember praying over you when you were but a day old in the hospital.  In my arms I held you, and began to pray a blessing.  But then I found that I was praying things like 'overcomer' and 'conquerer' and that God would be with you on the hard road before you.  I remember stopping in shock at the things I was saying, and my heart cried out No!  No!  This is not what I want for him!  Why am I praying this?  But it seems my spirit somehow knew what my mind never could at that time.  I wept and cried and wondered what on earth it all meant.  It took nearly two years before we knew.  But here you are my son, overcoming, conquering, little by little.  And I know God is with you.

Don't you ever forget that.  He knows exactly how your brain works, and exactly what is going on inside.  He knows everything about you - everything you can't tell me, He knows.  And He will always be there for you, even when I can't be.

I love you to pieces my little Mr Man.  And you will grow handsome, and strong, and kind, and clever.  You made me proud yesterday, and I just wanted you to know that.


With love beyond forever,

Mum  xx

Kintsugi

Before I had children, I always promised myself I would not discriminate between my sons and daughters when it came to helping around the house.  My sons would do the dishes, washing, vacuuming, ironing, cleaning the bathroom and toilet, and so on, just as much as the girls.  You see, my bloodlines come from a culture where traditionally, the females do the housework, and the men, well, they don't.  I always hated this.  So I promised I would not pass this particular cultural thing on to my children.  We all live here, and everyone helps.  End of story.

Then my only son came along, with autism in the picture.  And all my resolute promises went out the window.

Not because I wanted them to, you understand, but because as I got to know his abilities (or lack, thereof), I just thought he would not be able to care for himself, much less do any household chores.  But I didn't think this at first - on the contrary.  During early diagnosis days, I was absolutely dead set that we would just work hard with him and get him all the help he needs.  And by the time he was school age, oh, he'd be able to speak and use the toilet and so on.  He might just have a few cute quirks, that's all.  Our dedication and hard work would simply overcome the challenges he faced with autism and everything would be ok.  Simple as that.  

...How naive' I was.

Obviously, this didn't happen.  Oh, we did everything right.  We worked with him.  We got help very early - we were consistent, positive, prayerful, persevering.  But at six years old, he still can't communicate effectively, still can't use the toilet, is still a danger to himself (more than ever), still needs to be physically cared for much like a baby.  And so, after some time, I resigned myself to the notion that Erik would never be able to help around the house.

This rankled me so much.  It really did.  Because after everything, the girls still do all the work and the boy doesn't have to.  Even with the very valid excuse of a disability, it still annoyed me so much.

Then one day, something amazing happened....

I found him doing this.

And what is even more amazing (and rather hilarious), is that when I walked into the kitchen to see what the noise was about, he became very vocal and began pushing me away.  Even though I hadn't touched him!  He was just worried that I was going to try to stop him.

Wowweeee!  I mean; far out!  I was totally gobsmacked!

Instantly, I seized the opportunity and tried to encourage him, and help with some of the dishes he didn't know what to do with.  He still didn't want my help, but smiled and settle down at words of encouragement.  But I was so worried he was going to drop a glass or a plate and shatter it everywhere, so instead, I called the girls to come and help him.  This help, he delightfully accepted.

I never realised that all this time, he had been observing and noticing when the girls would unload the dishwasher.  I never once thought that he might like to join in, that this might be a really good chore for him.  After all, every dish has it's place, all stacked in their respective groups, always put away in the same cupboards, and this should appeal to him enormously.  Why did I not think of this before?  And look at how delighted he is with this task!  He is even saying a new word in relation to it; "cups".  He puts away the cups, and says "cups" with a little lisp on the end.  Tooooo sweet!

Suddenly my mind was reeling with the possibilities.  I really felt like the sun had just come up in my brain - I guess it was a classic 'light bulb' moment.  Never had one like that before, no jokes.

The dishwasher!  Of course!  Now I am teaching him to put away his pyjamas and make his bed in the morning too.  Later on, I may show him how to clear the dinner table with the girls, and wipe it down.  Oh, the amazing possibilities!  And I can tell you without hesitation, that this is the most wonderful thing that has happened in a long time.  Probably as good as the first time he began echoing words.  I am so blown away and so happy.  

You see, this was a shattered dream once.  A small one - chores around the house - but still, a shattered dream nonetheless.  And there are so many of those little shattered dreams that pepper our lives once we received that diagnosis.  But now, this little shattered dream looks like it can be functional once again, and it's the most beautiful thing to me.  It's rather like Kintsugi, where the repaired vase is all the more beautiful for having been broken in the first place.

I am learning to let go of my negative expectations.  It's hard, but this is part of the journey.  I am learning to leave the door of hope and possibility open.  It's not that I ever gave up on him, it's more that I just kind of stopped hoping for the best.  But who knows what the future holds;  Who knows?!  Maybe my little man is struggling with so many things at the moment, but maybe he will be able to do everything!  After all, with God, nothing is impossible!

In the meantime, I just have to watch out for dirty dishes in among the clean ones in the cupboards.


xx

The Kettle Is On...Must Supervise

Obsessions and compulsions are a typical part of ASDs, but they play out differently and with different intensities in each person.  They are about as unique as the individual.  One of the most common questions I have been asked when talking to someone about my sons' diagnosis has been:  "So, does he line up his stuff all the time?".  I must admit, it makes me chuckle, because the question is very stereotypical.

The answer is always; no, he doesn't.  He has lined things up from time to time, but so rarely that I usually grab the camera to take a pic because it's so cute.  My son is not a neat freak (thank God!  'Cause my house ain't neat most of the time!), and doesn't have to have his things set up in any particular order, but he certainly does have his patterns, obsessions and compulsions.

Eating and drinking...
He has a regular spot to sit at when it comes to eating.  Be it at the dinner table, the bench, or grandma's house.  He will only eat breakfast out of one particular bowl, but lunch and dinner can be out of anything.  He will rarely drink out of anything except his drink bottle or the Ikea plastic coloured cups.  No glasses, no straws, no fancy plastic cups.

Travelling...
The same route must be taken when we drive to various places, although he is now starting to relax with this.

Shopping...
Parking at certain spots at the local shopping centre means that we must then enter through certain doors.  If we ever park at one spot and enter through a different door, the boy is not happy.



Some of the most frustrating, and arguably, funniest compulsions that he has basically boil down to him having to 'supervise' certain events in our home...

Kettle...
If someone puts the kettle on, Erik will cease whatever he is doing - be it eating, iPad, dressing or showering, even playing outside if he hears it - to stand in front of the kettle and remain there until it clicks off.  When he first started doing this, he would scream and cry - not because the sound upset him, but because the kettle had interrupted whatever he was doing.  He couldn't help being compelled to attend to it, even if it meant missing his favourite song on TV.

Mummy put the kettle on!

Toilet...
For a long time, if a toilet was flushed - upstairs or downstairs - he would run to the couch and sit on the back rest until he could not hear it anymore.  This drove me crazy when trying to get him ready in the mornings (Can you imagine?  A household of eight getting ready for the day - those toilets are going to be flushing a lot!).  Mercifully, this compulsion is slowly relaxing.

Shower...
When someone is in the shower, he tries to get into the bathroom, just to hang around in there until the water turns off.  The amount of times my poor daughters have had the door burst open on them...!  If the door is locked, he will wait outside the door until the shower is turned off.  But while ever the water is running, you cannot move him from that spot!

Outside the bathroom door while Daddy showers. 

Microwave...
The microwave is another compulsion he has.  Anytime someone uses it, he drops what he is doing - just like he does for the kettle - and runs over to supervise whatever is being zapped in that microwave.  He has also discovered that it has numbers which count down to one, and that is a real perk for him.  Sometimes I hear him saying the numbers as they come up on the little screen.  Recently, he worked out how to make the microwave go all by himself.  I would often hear the microwave turn on, and dash over to find it running with nothing inside, and Mr Man watching the numbers in delight.  He managed to fry one microwave already doing this.  We have learnt that switching it off at the wall is a good idea.

What happens when all of the above are going on at once...?
Occasionally, we have a few of these things going at once.  At first he would stress out because he couldn't attend to everything.  Poor little tacker; that was frustrating to watch.  But recently, it seems to me that he has worked out a system of priority.  Microwave takes precedence over the kettle.  Microwave or kettle take precedence over the shower.  And the toilet flush has become something he may or may not respond to anymore.


If Erik has been put to bed, or is asleep, and happens to hear any one of these things, it is very likely that he will run out of his room to attend to the incident... bleary eyed and annoyed.  And so I have to admit, I have often taken to boiling water for my coffee on the stovetop,  or making people wait until he is sound asleep to use the microwave or kettle, or closing all possible doors between the bathroom and his room when there is a shower going!  Because sometimes, you just have to choose your battles!




xx