A Hidden Path

It seems that I have had a yellow Ladybug in my life, for the last 14 or so years.  For those who don't know, a yellow ladybug is in reference to girls with Autism.  Big Miss was recently given a provisional diagnosis of Autism, at age 14.5.  Unfortunately, the actual multi-disciplinary testing cannot happen for another 18 months at least - that's how long the waiting list is.  But the Paediatrician is quite sure she has it, and to be quite frank, she does fit most of the criteria very well.

So, why did it take so long to identify Autism in my daughter?  (After all, Mr Man was picked up extremely early... not even 2 years old... and diagnosed properly at 2yrs 8 months).  Well, the thing is, Autism presents quite differently in girls.  I had often wondered, at times, if my Big Miss danced around the edges of the spectrum.  She was particular about the placement of her toys, she would colour group pencils,  she would look at people as if she had no idea what they were talking about.  She began to grow very shy.  She began to get more and more needy of support outside of home, rather than develop an age-appropriate independence.  She would fad so very intensely on things... Dora the Explorer, My Little Pony, Garfield, Pokemon, My Little Pony again and more recently, birds.  She preferred the peace and quiet of nature to the rowdy fun of a family get-together.

Can't believe I found this photo!  All the teddies lined up on the couch, around 2 years old.

Colour grouped the pencils, 'cause she felt like it; around 4.5 years old.

Going through primary school, she struggled to make friends.  She usually had one or two, but they  seemed to disappear after a few months, bored with her limited games and her confused social presentation.  She had one particular friend, longer than all the others, who had ADHD (she often gravitated to other special needs kids, and we always thought it was because of her deep compassion and understanding of special needs, thanks to having an autistic brother).  This friend's treatment of Big Miss could be considered abusive.  It was a difficult situation, because the other girl's behaviour was obviously due to her ADHD, yet my daughter was suffering and hurting because of it.  She was sworn at and told to go away.  She was clung to, invited over, invited out, and given gifts.  She was abandoned and given the silent treatment for no reason.  She was confused and upset and sad.  We moved house for a different reason, and of course, moved schools as well, and this gently brought a solution to that dilemma.

She struggled to make friends in the new school.  The class was rowdy, the teachers unable to control the room.  She hated it and struggled with the chaos and noise.  In the schoolyard, she stuck with her little sister, who was - and still is - such a source of support for her.  Her shyness got worse and worse.... still, we thought she was just painfully shy, introverted; It's just her personality, we said.  She was not interested in the same things other tweens were interested in.  Make-up?  It feels yucky on her face.  Earrings? It hurts to change them.  Pretty clothes? Uncomfortable and painful.  Party? Excitement followed by deep silence and social/emotional retreat.  Pop stars? Not interested.  She just wanted to play with her ponies in the imaginary lands she created or play Minecraft.  We didn't realise it because she masked it so well, but Big Miss's anxiety was growing and churning beneath the surface.

Miss Jane, left, 7, and Big Miss, right, 8, enjoying toffee apples under their favourite tree.

Brushing her hair was painful for her, and she hated it being cut.  I had to remind her frequently to have a shower, use her skin care products that I'd bought for her, put her dirty clothes in the wash and wear something different.  New clothes were often never worn, and when asked why, she said they were uncomfortable or hurt.  I began to get frustrated with her lack of developmental independence.  Surely I shouldn't have to brush or wash the hair of a 13 year old anymore!  I shouldn't have to coax her to take care in her appearance!  I shouldn't have to be worrying about whether she's okay, or holding back tears when we go visit family/friends (rare enough as it is!).  This is not the way normal tween/teen girls behave.  Something is wrong.

Back in Dec 2104.  Add another, oh, 8 inches or so to this, and you'd have it at about the
length we've now got.  Yip!  Not even kidding!  

One day, a post came up on my Facebook feed, about symptoms of Autism in girls.  Pretty much every one of them described my Big Miss.  The penny finally dropped.  She's not dancing around the edges of the spectrum.  She's on it.

I did some more research, and then decided to speak to her about my thoughts, and ask her to do a short screening questionnaire that I'd found on a reputable site.  More to give some tangible reason to check things out further, than anything else.  When I took her aside, and spoke to her, the response blew me away.

"Darling," I said, "I've noticed that you are feeling so anxious when we go out; and that you don't seem to be interested in the same things that other girls your age are doing.  That's ok!  You are who you are, and you are beautiful.  But I can see that you're struggling sometimes, and I am wondering if you might be on the autism spectrum - maybe Aspergers?  Obviously not as severe as your brother, but it's something I'd like to check out.  If you've got it, then we know what we need to do to get you the help you need.  And if you don't, at least we know, and then we can keep looking to figure out why you are so anxious and get the support that fits properly.  I have a short questionnaire here that can help us work out if we should look into this further... What do you think...?"

"Oh mum," she answered, "I'm so glad you said that.  I've been wondering the same thing! I feel so different to the other girls and I just can't work out why."

The questionnaire results said that a score of 30 or more indicated the likelihood of an ASD, and recommended following with a visit to a Professional.  Big Miss scored exactly 30.

Fast forward about 2 years, and we finally have a provisional diagnosis.  In that time, her anxiety got so bad, she began to self-harm without noticing.  She has developed depression as a result of her severe anxiety.  She has asked me if she could stay home from school.   She has contemplated running away from certain classes, and only the guilt of "doing a bad thing" stopped her from absconding.  She would shut herself away in her bedroom after school, crying and sleeping from the exhaustion of holding herself together all day.  I did everything within my capacity to help her...we had long (2 - 3 hour) conversations about what was happening.  We brainstormed grounding strategies for the times when anxiety attacks struck.  I emailed her teachers and the welfare coordinator to implement support at school (they've been fantastic).  I bought her fidget devices to try to channel her anxiety.  We prayed.  I prayed....

Big Miss starts intensive counselling this week with a Psychologist.  We have got the ball rolling for a formal diagnosis, but we don't need to wait for that paperwork to get her the help she needs now.  The Paediatrician has put recommendations in place, and I anticipate some intensive homework and behaviour plans to help with things.  We will need to check back in 6 months, to review progress and take a blood test, to rule out any chromosomal factors.  She is so relieved to have this label.  Finally, she can put a reason and a name to her experiences, and this has been very empowering for her.  She still struggles with school and with social anxiety, but finding some sense... some reason... for it all, has provided an important validation for her.  She has given me her consent to write here, and to tell people about all this.  She has embraced it, and is keen for people to understand why she is the way she is.

Big Miss still has dreams and ambitions.  And I intend to see them through with her.  The label has not boxed her up or limited her, it has released her.  She now has a platform to work from, a framework of reference from which she can plan her life, and launch out into the world to take hold of life, establish her goals and conquer them.  I will admit, quietly, but truthfully, I am a little bit afraid.  What if her anxiety really does get the better of her?  What if she never learns to drive, to manage university or employment?  How can she work if she can't even ask the teacher for a piece of paper? What if I have to support two adult children when I am old?  But I don't dwell on those fears.  My God can take care of it all, and as always, He's got us.  My job now is to consider the challenges, and do what is in my hands to do, with, and for, my daughter.

It seems, this whole time, I was walking a hidden path.  While Mr Man took up my time, energy and attention, there was also this little yellow Ladybug who was here the whole time. She managed to tag along, unique, but otherwise unremarkable, until now.  As with my son, nothing has changed - she is who she is, who she always has been, and I'll do what I have always done in taking care of her.  And yet, everything has changed.  It's like a whole second pathway has unlocked beside me.  Somehow, I walk the two at the same time, or perhaps they will merge in some mysterious way, as life goes on.


xx




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If you would like to know more about Autism in girls and women, please do visit the Yellow Ladybugs website, or check them out on Facebook.  This is not a sponsored post, I've linked this of my own volition because I've found this volunteer organisation to be wonderfully supportive, informative and helpful.

Yes or No

It's been quite a while since my last post, and I really feel like I've let everybody down!  But don't worry, I haven't forgotten you.  As with anyone, life throws a lot of bits and pieces my way, and honestly, blogging is not the highest priority on my list.  Having said that, I do miss it and feel that I have missed out on recording lots of incidents that are worthy of note.  Nevertheless, I am here today!

Mr Man is now in his third year of schooling.  That puts him at the equivalent of Grade 2.  It is amazing to watch him grow bigger and stronger all the time, and frankly, more handsome :).  Yep...still biased.  He absolutely LOVES school, and I love that he loves it.  This boy thrives on the stimulation and routine that school provides;  from the bus trip, right through to the activities designed to teach him how to ask for something or take turns.  School holidays are worse than boring for him.  It drives him bonkers, and usually leads to a much higher rate of stimming (which in turn, drives me bonkers).  But we manage.

Last week, I had a Student Support Group (SSG) meeting with his teachers, for the start of the school year.  On the list of things I wanted to discuss were;

1. Literacy - reading and writing
2. Toileting - nope, still not trained yet.
3. Speech development - an ongoing concern
4. Introducing Yes/No questions
5. Absconding behaviour

We only had one hour to talk about all this, so it was a real challenge (mainly because I talk too much!).  But kudos to those wonderful teachers; we got through all of it.

The main reason I'm writing today is to talk about number 4 - the Yes/No questions.

During the last couple of weeks, my husband and I found ourselves in one of those talks where we were sighing and talking about the pain of how AD has affected us and our children.  You know, just letting it all out and connecting with each other about it all.  I found myself saying:  "I wish I could just ask him a question, and have him answer yes or no.  Just yes or no.  Even that would be a massive step above what we have now" (which is literally nothing).  It stuck with me, and I thought, well, why not?  It should be possible, given what I hear of him doing in class at school!  I decided to ask his teachers about that possibility this year.  They both said there is no reason why not.  He is showing enough comprehension at school be able to do this, so they were happy to help me try at home.  Yay!

The next day, he brought home a little strip with four PECs on it:  Wait, Help, Yes and No.  I was so excited, but at the same time trying not to get my hopes up too high.... we've done all this before.  Still though, he does seem better positioned now to respond to these attempts to teach him.

So this morning, I brought out the Yes/No strip, and took it over to where he was playing with his iPad...

"Erik, do you want to have breakfast?" ... I showed him the strip.  He did not pay attention.  But of course he won't, until he finishes the current activity on his game!  So I waited a few moments, and when he got all the stars and took the robot home, I asked again.
"Erik, do you want to have breakfast?"  I put the strip in front of his face (yeah, I do that) and pointed to the Yes and No PECs.  "Yes or No?  Do you want to have breakfast?  Yes or no?"

He pointed to yes.  Yes!!

Just to make sure, I assisted him to pick off the Yes PEC, and place it in my hand.

"Yes!  You want breakfast.  Okay."  I went into the kitchen to get my son his breakfast!

.... but then I had another thought....

I took the strip back to him with another question.

"Erik, do you want Corn Flakes?"  (He usually has Weetbix, but will eat Corn Flakes too)

Clear as day, he pointed to Yes.  Woohoo!!  Happy dance!  Happy dance!

It's only the first day of trying this, and I know I shouldn't get all happy like we've made it, but man, it's a good feeling to see something actually work!  Yes/No questions do have limitations, but for us, they would be a massive step in giving my son a voice.

It's a little win today, that could end up being a big win.


xx

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,

Vivianne.



xx

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

Understanding

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.

xx

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!

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

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

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

Chew Chew!

Yeah.  Frustration.






xx

Starting School

Erik loves school.  He loves it!  I knew he would.  He loves riding the bus each morning and afternoon, and he is loving the stimulation that school provides.  He loves the routine and opportunity to play outdoors and on the play equipment.  He loves the music sessions and OT sessions.  It really has been the best thing for him.

On the first day of school, hubby and I decided to drive him in ourselves, and bring all the girls too.  This way, although they would go late to school, they would get to share the experience of their brothers' first day.  Unfortunately, the Autism-specific school is quite separate to the mainstream one the girls go to.  So they have missed out on all those exciting and proud times when a younger sibling starts school with them.  Bringing them along on his first day was a way to compensate for that in some small way, and they loved it.

Four kids in the back of the van.

Wondering where we are going.

In the schoolroom.  Girls will smile for the camera, Erik has more important things on his mind :)

Hubby has been the one to get up early and get Erik ready for school.  I cannot begin to tell you how much that means to me.  I am not a morning person - never have been.  Four children and ten years of managing babies has not made me a morning person!  If that hasn't done it... it ain't gunna happen!  But further to this, and perhaps more importantly;  Erik is a growing boy.  He is now up to my shoulder in height, and weighs almost half of my own weight.  He is becoming more difficult for me to handle, simply due to his size.  Most of the time, I am ok;  ie. When he complies with all activities and attends to the task.  But when decides to be difficult, or when he is simply not attending, I am really starting to struggle.  Brushing his teeth has become all but impossible for me.  This is where daddys strength comes in.  We simply need him to take on part of Erik's personal care just because the boy is getting too big for me.  (This entire issue deserves a post of its own.  But I will try to stick to the topic at hand).

Having three children at two different schools presents a logistical challenge for us, particularly because they are all of primary school age.  It's not as though we can send off our teens to get to school on their own while we tend to the younger ones.  Because they are all still young, they need to be supervised on their way in.  However, Eriks' school has a private bus service at no cost to the parents.  How lucky are we!  You don't have to take up on it, but of course, we did.  It means that all we have to do is get him to the pick up/drop off point, which is a lot closer to home than the school is.  The only problem is, we have been allocated one of the earliest pick up times and latest drop off times.  Erik needs to be at that bus stop by 7:18am.  And I don't get to pick him up until 4:42pm.  That is a very long day for him - (though he doesn't seem to mind).  So with the girls finishing at 3:30pm, this creates a major time gap for me in the afternoons.  I lose about one hour everyday just in time wasted because I can't really do anything substantial in between collecting the big girls from school and waiting for him.  It has turned out to be a bit of a pain really.  But in the end, we are grateful for the service as a whole, and I decided to try and make the best of the 'lost' time by leaving earlier than necessary to collect the girls and having a coffee with my mum while waiting.  It's good, because I get to see her a little bit everyday.

The bus.

Putting Erik on the bus each morning always leaves a little flitter in my heart.  Oh, I know.... letting your little one toddle off to school like a big kid is always a bit sad for mum, but this boy here... he is my baby.  He is so much more vulnerable than most other kids.  And to put him on a bus and wave goodbye...?  Eh.  It is hard.  I didn't do that with the girls!  And they aren't autistic!  But, we put our reservations aside, and let him take the bus anyway.  After all, they have been doing this for 30 years, so they would understand what it is like to deal with an autistic kid, right?  And Erik really does love it.  I knew he would.  He has always loved car trips, and anything with proprioceptive input.  The bus is a fabulous way to get a daily dose of that.  Twice!  

The school has a really good curriculum.  It is totally different to the sort of thing you would learn at a mainstream school, yet they still manage to do things related to numeracy and literacy and all the basic general topics that primary schools need to do.  Just not in the conventional way.  They fit them in around learning basic skills that normal kids can just pick up along the way.  Erik is learning how to communicate with PECs again.  He is learning how to actually sit for a group session - (believe me, this is a big deal for us!)  He has learnt how to get his own lunch box out of his bag and open it.  He is learning how to engage better, and, from the first week I could see such a difference! 

I love it when a toy manages to capture his interest!

From that first week, he came home so bright, so much more 'with it'.  He would stop me and look into my face, making eye contact and smiling at me.  He is echoing more, babbling more, repeating more things that he might have heard somewhere at some stage.  The second day of school, he was already wearing his bag!  I tried quite a few times to get him to wear his own bag during the kinder year, but he wouldn't have a bar of it.  These teachers are amazing!

Bag on his back = Win!!

They have taken him (and all the class) on excursions several times already.  To know that someone else has taken my son out and about without me is so far-out for me.  You have to understand;  I NEVER let this boy go with anyone but his father or myself.  For good reasons.  So knowing the teachers do this really makes me nervous!  But we gave our full consent at the beginning of the year, and my oh my, we have seen the benefits!  My beautiful boy is so much more compliant when we go out and about now.  He will hold his fathers or my hand willingly, and walk along with us with very little trouble.  I'm not saying that outings are now completely free of meltdowns and absconding, but those incidents are greatly reduced.  To the point where I have been able to take all four children out to get groceries, by myself, on two occasions these school holidays.  Amazing!

From early on in the school year, Erik and one other child in his class were identified as high priority for OT.  To know that they were able to see this need in my son, without me having to point anything out, was so reassuring.  They really know what they are doing; my heart is at ease.  On the other hand - and this is the bittersweet thing about having a child like Erik - it makes me a little sad to know that my child is one of those who needs intensive and specific attention.  But the point is, they are providing him with what he needs.

More and more I am satisfied that sending my son to this Autism specific school has been the perfect choice for him, and I couldn't be more grateful.  I love those teachers and aides - I really do.  I am grateful for my country, for the way they seek to include, assist and always look to do better.  Oh, yes, we could always do more.  But what we have is already a blessing.

xx