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.

Changes

In October of 2015, my life was hurled to the ground so hard that I completely crumbled.  My husband and I broke up, after just shy of 17 years married.  To say it was traumatic is a major understatement, but I won't be going into the details.  The only thing I will add is that it is 100% over and my personal recovery is still in progress.

I hope to continue blogging, but obviously there will be a new perspective now... I am a single parent, and the primary carer for all of my children, Erik included.  The details of the parenting agreement are still being fine-tuned, but on average, the children are supposed to spend every fortnight weekend and half the school holidays with their dad.  

Myself and the children continue to adjust to life as a single parent family.  The kids have been amazingly resilient and I am disgustingly proud of all of them.  Things get hectic, there is a lot on my plate and I often feel overwhelmed, but generally speaking, life has actually gone on as usual and the overwhelm is more for the emotional adjustment for me.

I'll be trying very hard to leave the emotional realities out of my posts, but due to the transparent nature of my personality, that might not always happen.  It is likely that my posts will be erratic and irregular for various reasons - too busy, too emotional, too much to say, too little to say... etc. etc.  But I'll try, because blogging here began as a way to document my journey as a special needs mum, and that's the reason I'll continue.  The beautiful thing about this blog is that it started before Erik got his official diagnosis... so the beginning really is the very beginning.  At this point in time, Erik is 9 1/2 years old.  I actually find that pretty amazing.

Lets see if I can pick this up again and carry on.....

xx

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

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

Dubbedah

I always knew he would be the sort of boy who would just do things when he was ready.  There would be no rushing him.  Over two years of speech therapy, early intervention and other assorted sessions, and nothing.  We quit speech therapy, it wasn't working for him; early intervention ended due to him being school age; all we were doing was some occasional OT through the holidays, biding the time till school began.  Then suddenly, one day, shortly before Christmas......

"Dubbedah.....dubbedah...dubbedah...."  His croaky voice floated around the house as he experimented with some new phonetics.  "Dubbedah...dubbedah...dubbedah....".  I followed the sound of his voice to find him.  Whenever he makes a new sound or produces a new phonetic, I like to jump on the opportunity and repeat it back to him.  Finding my boy, I knelt down to his level and repeated this new 'word' to him.  Slowly, a smile spread across his gorgeous face.

"Dubbedah, dubbedah, dubbedah..."
"Dubbedah, dubbedah, dubbedah!"

Back and forth we spoke, his smile growing wider until he began to chuckle, that cute little bit of saliva dribbling down his chin the way it does when he's building up to a big belly laugh.

Over the next few days, I heard this word a lot.  Whenever I could, I would repeat it back to him, bringing his attention to this new sound his mouth was making.  After a little while, I thought I might attach some new words to the end of the string.

"Dubbedah, dubbedah, dubbedah-daddy!  Dubbedah, dubbedah, dubbedah-mummy!"

He would echo me, trying his hardest to produce the different word on the end.  It. Was. Amazing!  The whole family noticed.  All his sisters got excited every time they heard him speaking these words.  Baby Miss - not so much a baby anymore - even developed her own version of Talking Tom (you know, the iPad app where the cat echoes what you say?).  She'd make different sounds and noises, even just laugh, and her brother would do his best to echo her.  It was one of the most beautiful interactions I've ever seen among my kids.  They'd go back and forth this way for ages, until they both collapse in a puddle of dribbly giggles.

Over the next few weeks, this nonsense word - dubbedah - became a prompt for all kinds of new words and sentences.  Not that he could echo accurately every time, but he was trying - really trying! - and that was amazing in itself.  Sometimes, he didn't even need to have dubbedah preceding a sentence before he would echo.  At this point, he has almost dropped it altogether, but the echoing - blessedly - continues.  One afternoon, I was even able to get him to echo 'bye-bye Tayta' when leaving my mothers' house.  She nearly burst into tears with joy at hearing these precious, amazing words, from my son.  It doesn't matter that it was just an echo to him, and that he does not yet attach meaning to most of those words.  He said them!  And oh, how sweet they are coming from his mouth :)




xx

A Word In Time

I got some lovely gifts this year. A gorgeous ring, Kylie Minogue's 'Darling' perfume, $100, some Masterchef kitchen gear, a punchbowl, electric knife.... truly spoiled. But the best gift wasn't any of these nice - and they were really nice - things. Sorry mum. Sorry honey. Sorry all. The best present I got was from my son.

I'm sure you could all see that coming! I wanted to share it with you anyway.

Boxing day, in the evening.... we were sitting on the couches altogether with my SIL and her hubby. Just hanging around. TV on, not doing much. Little Man had been climbing over the back of the couch onto me, but was now sitting in my lap, slouched, as is his way. I started playing a game with him. He opens his mouth and says "Aaaaaahhh" while I bounce my hand on his mouth to make the sound turn into a "wa-wa-wa" sort of thing. He loves it. This is in itself a big step, as just a few months ago, he couldn't purposely produce the "aaaahh" vocalisation required to play this game.

So there we are, wa-wa-wa-ing. He laughs and giggles. He loves this game. He takes my hand and places it over his mouth to indicate more. After a few rounds, I took my hand right away and asked him...."More? More wa-wa?" He becomes very still, a look of concentration comes over his face.

"Mmmmmm-ooohhh".

Ohhh. Wow. A word! A single word in appropriate response! Just. Wow. Best present this Christmas!

Hope yours was as lovely as mine.

xx

We Have A Voice!

Finally! Sort of. And I've been needing to post this for a while. I know I've been silent for ages, and I apologise for that. I still can't seem to get my head around the things I need to say for some reason. Also, my computer is now usually claimed in the evenings by my hard-working hubby, which means I can't blog after the kids are in bed anymore.

Anyway, anyway.... we have a voice!

My little man has finally got the hang of PECS! He has been at it for a few weeks now, so it's well and truly clicked for him :). He is now bringing me pictures of things he wants several times a day. They are usually food, but sometimes he will bring me a picture of a toy or his blanky. I have slowly been expanding the range of pictures as he grows more comfortable and skillful with the system. I have even started taking a folder out and about with us to see if he can generalise the PECS while we are out... and yes! He can! He does! Yippee!!

But wait! There's more! Not only does the boy give pictures to me, but he has also been giving them to his big sisters! Why is this so great? ... because it means he is beginning to generalise his idea of 'asking'. It means that on some level, he is aware that other people can help too, not just mum.

I think things really started to click for him when I made more of an effort to show him what it was all about at home. He had been going well with the PECS at the SP's office for quite some time before he was able to use it at home. Two of the things I did that I can pinpoint that made a real difference were: 1) Giving him a 'drink' picture at the dinner table. He had to hand me the picture when he wanted a drink. He would also see me bringing the picture to the table from the PECS board, so that helped him understand where the pictures were kept and what to do with them. And 2) I added a whole bunch of new pictures to the PECS board one day, just as a "might as well do this too" task while I was doing something else. When he came home from kinder that day, he seemed to really notice the board and study the pictures. he even selected one (of his favourite toy) and brought it to me immediately! Prior to that, he pretty much ignored the whole thing.

The benefits of this new-found ability are more than some people might realise. First of all, there is now an avenue of communication between my son and other people - (even if it is mostly just myself at this stage) - also, his sisters now have a tangible way of communicating with their brother. I can't say how wonderful this is for them too. My girls love their brother so much, but often become so frustrated by his behaviours and inability for two-way communication. PECS is one step closer to facilitating that between them. More than mere information exchange, it also facilitates the beginnings of a closer interpersonal connection with the family and others. It shows my boy that there are ways to get what you want in an acceptable manner. It also means I can ask him what he wants and offer him some options instead of always 'dictating' him. It has given him a measure of freedom in his world: when you have no way of communicating with others you really are, in a sense, quite trapped. Instead of wandering around the place, maybe feeling like he is overlooked and ignored, he now has a way of expressing himself and making his wishes known without having to cry or scream or pull me towards something. This applies when we are out and about too.

I am so happy - for him and for myself haha! It only took 1.5 years of ST to get here, but here we are! The next step is to set up a visual daily schedule and begin teaching him about structure in the day, timing of events, etc. I am probably about 3/4 of the way through setting this up for him already, so I will post up when it is done :)

It's just truly wonderful. Of course I can't wait for the day when he gains speech, but for now, my little man has found his voice without having to make a sound :)

xx

Into The Battle Arena

Ok. It's time. I am about to enter the battle arena, and tackle a great monster called 'Toilet Training'. That's how I feel anyway. It's funny.... I have been confident with just about every aspect of mothering for all my children, except when it comes to toilet training. Normal girls included. I just dread it. I don't know why I am so not confident with this, but that's just how I feel. Anyway, it must be done. I had fairly quick success with the big girls of course, but my little man is going to be a very different story.

At least that is what I have come to believe after hearing stories, advice and anecdotes about toilet training autistic children. I have been told not to even bother toilet training until he is at least 5 years old. Not to worry about it now, as he is not showing signs of readiness. Not to do it yet because he cannot speak and therefore cannot tell me when he needs to go. But, I have also heard that new research suggests that special needs or no, a child should at least begin toilet training by the age of two. Well, we are way past that now. I wish they told me that one when he was younger!

I'm throwing out all the previous advice, and I am going to tackle this now. I agree with the new research....I believe it is past time - he is a big boy. Speech or no speech, we will find a way for him to tell me - we have with other things! If it becomes too stressful and we don't have success now, that's fine. I will drop the matter completely and try again another time.... probably at the end of the year when I toilet train the baby miss. But sooner or later, we shall succeed! (*cue victorious music*)

So! I have come to the arena equipped with my weapons of choice:

First, we have some new jocks! A couple of different types of pull ups for the night time... I'm thinking the blue ones will be best, as they seem more like undies and less like a nappy. Some old toilet training underwear that the girls used years ago, and some lovely new little boys' jocks with some fun designs. Can't say how much I loved buying those ones :). Cute!

Next up, a lovely textured bath mat. My little man loves feeling textures with his feet. Not with his hands. One of his favourite activities is to walk around the backyard barefooted - thistles, dirt, mud, gravel, dry grass, hot bricks, WASP STING!! - none of that bothers him. He loves it. So, texture for his feet. (PS: I have a spare one too, for the inevitable accidents!).

A nice sturdy step support for his cute little feet.

Left wall. Do you know how hard it is to find big posters of kids characters?? Impossible! So I bought three kids magazine, and cut and paste pics of his favourites and stuck them to the walls and door. It'll do :)

Right wall. More posters and characters.

Last, but not least, a bucket of books and toys and stickers in the corner. All his favourite characters. He doesn't usually show interest in books and stickers, but I will try anything! After all, he is sitting in the one spot for this isn't he?

All to create a fun, warm and enticing toilet!! ... at least I hope so, hahahaa!

Lets not forget, my trusty chocolate buttons for rewards - very important!


Well, so far this has turned out to be a rather expensive undertaking. Lets hope it is successful, so I can justify my costs compared to buying nappies.

We start this afternoon, when I pick him up from kinder. Wish me luck!!



xx

For the purposes of recording our progress:
Erik is currently 3 yrs 7 ms of age. He is still non-verbal and still getting the hang of PECs. ....Crazy much? lol...

The Microwave

He has discovered it. Unlike the light switches, this discovery is a real pain. He started by just opening and shutting the microwave door... very pleased with himself for the new discovery. Then he progressed to investigating the inside of it. Soon, he was fiddling with the dials on the outside and turning it off and on.

This is a hard one. Unfortunately, I can't just let him play with it until his curiosity is sated. Rather than stand there and fight it out every time, I have resorted to just taking the plate out and unplugging it from the wall. He loses interest in it pretty quickly that way. The problem is, when I need to use it, he is there in a heartbeat, crying and getting all upset because he wants to play with it. Then, I do have to stand guard, blocking his way and continuously saying 'No. Don't touch please'. Driving me bonkers!... Reheating stuff is ok, but when I have to defrost things from the freezer, it's a real pain.

At the same time, of course, I am happy that he is exploring and has discovered something new. I am beginning to realise this is a hallmark of being a mother to an autistic child. Frustration and joy all at the same time. Is it any wonder I'm crackers?? Hahaha!



xx

The Big Bed

The big bed, all set up and ready to go!

Last night we moved the little man to his big boy bed. I've been itching to do this for quite a while, but we were waiting on some safety gates to go through approval for funding/ delivery/ etc. Took ages. Very annoying. But the first one arrived yesterday with our EI worker, God bless her. After all that effort though, it turns out that the one I ordered needs to be screwed into the walls - something I didn't realise when I chose it. So we couldn't use it after all. Now I need to seek approval from our landlord to attach it to the walls. I believe that if it is required for disability purposes, they cannot say no, but they may charge us for plastering the holes and repainting the entire wall when we vacate. I really hope they don't, but I guess that's a risk we need to take.

Anyway, back to the subject at hand!!

I set up his big bed with cute new dinosaur linens, and placed two pillows by the edge near him in case he fell out during the night. We couldn't use the new safety gate, so hubby dismantled part of the playpen and wedged it into the doorway so the boy couldn't get out. One of my primary concerns is him waking in the night and roaming the house unsupervised, which is why we need the safety gates. We didn't have this problem when the boy was in his cot, because he was never interested in climbing out if I wasn't there (part of his pattern).

This is what we have upgraded from.

So anyway, I took his blanky and his dummy from the cot and put them in his new bed to help him with the transition. I put the little man into his big bed for sleep. He didn't protest and didn't seem upset. But he did take a loooooooong time to settle. I could hear the doorknob being fiddled with (he hasn't worked out how to open them yet, haha!), and the lights flicking on and off. After some time, things went quiet so I stuck my head in to have a peek. I expected him to have fallen asleep already. He didn't have his afternoon nap, you see, so he should have been exhausted. Instead I find him lying awake in his bed with the light on. Nooo! Mentally kicking myself for disturbing him, I resettled him and left. Eventually - like 3 hours later - he did fall asleep.

Fell asleep in the corner with his blanky and the lights on.

At about 6am, hubby woke me to inform me that the little man was up. My hubby wakes early most mornings and is out the door before we are even up. When he had come out to the kitchen, he found the little man standing at the barrier with the lights on, hissing to himself (he likes to make 'fffffffff' and 'sssssshhhhh' and 'sssssssss' sounds. I call it hissing LOL). We didn't know how long he had been awake for. At this point, I put him back into his cot with his blanky and dummy and closed the door again. I didn't want to resort to that, but with hubby up and about, I seriously doubted he would go back to sleep with the door open and free access around the room.

So I fully expected the little man to be extremely tired and prone to the grumps today, because of his late night and early morning. But so far, he has been more than pleasant! I've just put him down into his big bed for a (hopefully) short nap to help him get through the day, but I have no idea if he will actually sleep or not. This new bed will take some getting used to, but if we want to make this transition, the distinction needs to be as clear and as consistent as possible. So I might have to put up with a tired grumpy boy for a few days while the change settles in. But honestly, he has, so far, handled himself very well. I am so blessed.



xx

Blackboard

I have seen many benefits as a result of my little man attending childcare. But one that I can pinpoint with certainty is the way he has become so much more inquisitive and interested in toys and games around him. In a recent post, I mentioned that he loved his new magnetic drawing board that he got for Christmas from my mother. Well, it seems he is beginning to generalise this concept to other things, which is so fantastic to see.

After giving him some time to enjoy the magnetic board, I brought out some chalk and a duster, and introduced him to the blackboard. He took to it straight away! I looooove this so much. It tells me that he was able to broaden his understanding of what it means to 'draw' - that it is not limited to the magnetic board, but can be used with other things too. So far, he hasn't been very keen on crayons and paper, but I don't think it will be long before we work up to it.

His fine motor skills (or lack thereof) do tend to create problems for him. He is still unable to hold a spoon correctly - he grips it with his whole hand kind of like the way a baby still in the learning stages would. The same holds for his grip on a crayon or pencil. As I stood watching him explore the blackboard, I began to notice him adjusting the way he handled the chalk and duster. I cannot begin to say how much joy this brought to me.... that right before my eyes, he was learning and working things out for himself. In the pictures you can see how he changes the way he uses the duster, and how he moves from two hands needed to manipulate the chalk, to one hand and a reasonably correct grip.

Two hands to manipulate the chalk ... and lots of dots! He loooooooves drawing dots for some reason.

Working out a good grip on the chalk - I like this because it is exercising his fine motor skills.

From dots to lines - 'round and 'round! I adore those cute scribbles *hearts*

He starts off using the duster with the flat of his hand - obviously this is not going to be very efficient, but at least he knows what to do with it!

Wait a sec..... he is using his other hand to hold it steady while he guides the duster with his fingers. I realise this makes no practical sense, but as I watched him work, that was indeed how he was using it. Definitely a step up from trying to 'wipe' it around the board though!

Yay! He finally figures out the best hold on the duster and uses it like a pro - rubbing out anything his sisters try to draw on "his" blackboard haha!!

Beautiful beautiful scribbles :)

These beautiful scribbles are worth more than Monet to me *hearts*.

xx

He Has Discovered.....

... light switches!

I was wondering when he would make this discovery. It's not unusual for ASD kids to have a thing for flicking light switches on and off. However, by normal developmental milestones, he should have discovered the light switch several months ago. As with many new things my little man does, I'm not sure if I should be pleased about this or if I should expect some frustration from it. I've already found lights switched on all over the house! Now I know why, hehe!

Can't help laughing, and can't help being happy. It's a new discovery after all :)



xx

A Croaky Moan

I don't know for sure, but I think little man has been trying to speak! Recently, he has been making a new sound - hardly noticeable at first but definitely different and definitely new. The sound was a little bit like a croaky moan...."Mmmmm" or maybe even "Nnnnnnn" ..... hard to tell. I told the Speechie about this new sound - he even did it while we were with her. But she said it was probably just a sigh or something. But only days later, he has added other sounds to it; a bit like "Nnnnnaaaaahhhhhbbbbbwwwfffffmmmm...".

Have you ever had one of those dreams where you try to scream or speak and it feels like your face is paralysed so you can't get the words out...? Well, that's what he sounds like. Kind of slurred.

He has progressed from that first little croak to short strings of babble. I first heard it a couple of days ago. He was around a corner of the house, out of sight but not out of earshot. At first I thought maybe my brain was embellishing a little sound into something more because of a hidden hope inside. But then he did it again last night! And when I told hubby, he mentioned that he heard the boy do the same in the bath the night before (I was out). So now I know I was not imagining things!

He has also been making "ffffffff" sounds - but it's sort of like when you blow bubbles kind of a fff. Sometimes it's more of an "Ooooffff!". And 'sssss', he has been doing that one too.

Last night, as he was playing around the lounge room, I could swear I heard him say 'Go!' ... or at least try and say it. It's so exciting, but I'm trying not to hope too hard in case I'm disappointed. Trying but not succeeding much LOL.... I can't help how my heart soars when there's the smallest inkling of a new skill developing.

Can't wait to tell the Speechie this week :)




xx

Tappy's Hammer

A little while ago, when we first realised there was something going on with Erik, we went out to buy him some toys. We did this because he wasn't playing with anything we had at home, and now that we knew the reason why, we thought we should find some toys that would cater more to his particular preferences. After all, can't have him walking around in circles all day now can we? And walking around the house was literally all he did most days.... except when he was tugging at my legs to get me to go one place or another with or for him.

Anyway, one of the things we bought was Tappy the Turtle. Hubby chose it - he is very good with choosing toys for kids. I always seem to miss whereas he usually makes perfectly appropriate choices. I wonder why this is.... hehe :)

Tappy with his head tucked in.

Even in the trolley, my little man was already enjoying this new toy. When we took Tappy home and took him out of the packaging, little man was right into it! Pushing all those shapes down and then grabbing me to tuck Tappy's head back in so all the shapes would come out again. Eventually, we taught him how to tuck Tappy's head back in all by himself. But although he liked playing with Tappy, he never ever used the hammer that came with him.

Until recently.

Over the last couple of days, I have found mr man doing this:

He's using Tappy's hammer!! Yay!

He's using it the wrong way, but I don't really care! See, my little man seems to have trouble making the association between using various implements to achieve things. For instance; using a spoon or fork to eat - took a long time for him to get this, and it is still a difficult concept. Or using a crayon or pencil to draw. He just doesn't seem to get it. It has always been hands and fingers. I wonder if this is a part of the Gestalt thing? I didn't think it was that literal.... I don't know.

But now he's using Tappy's hammer and I'm so happy! It's another small step :).

He also seems to be proud of himself. I really think he knows this is a new thing and is rather chuffed at his new discovery.

So proud of my little man.


xx

It's Good To Be Jealous

What? A christian should never say that! Ahh... but in this case, it is true!

The sweetest thing happened in the church creche (Jitterbugz) this morning. Actually, a few sweet things happened!

1. My son actually joined in with the singing, and laughed and clapped when a familiar song was sung! Most of the kids there had never heard the boy make a peep, so they were all staring at him in wonder when he was laughing. It was so sweet.

2. Lately, I have been placing alot of emphasis on 3 particular words: Banana, apple, and yoghurt. But this morning, as I handed him some sliced banana to snack on, and said the usual "Bah-nah-nah!" for him, he smiled and turned his face towards mine. Then he paused to concentrate on what I was saying. Then he leaned in soooooo close that his mouth was almost on mine! And what's more, he placed his hand on the side of my face to draw it in closer to his!

The only way I can think to describe the whole thing is like this: that he knows and understands what I am saying, and wants to say it too, only he doesn't know how, so he wants me to move his mouth for him to make him say it. Too cute!


3. This is the biggest thing that got me today. One other little boy in the creche was very upset, and crying for his mama. This little fellow climbed up onto my lap for some comfort and sat there as I cuddled him. My own son was off playing somewhere else.

But when Erik saw me cuddling this other boy, he came straight over. He tugged on my legs, and when I looked at him, he looked me right in the eyes with this expression of hurt on his face! It was amazing! Then he tried to push the other boy off my lap, and looked at me again!

He didn't even need words to be able to tell me he was jealous. I could see it all in his eyes.... they were so expressive!

"Hey! You're my mummy! What's he doing here? Get him off! You're my mummy!"

He was jealous and he showed it... a very normal toddler behaviour. And it was so beautiful!






xx

Something New

My son did something new this morning. It brightened my day alot.



He stuck his hand inside his cup of water and was swishing it around. He'd take his hand out and look at how the water droplets dripped off. He'd smile at it, and put his hand in again. It was so cute. He has never done this before.

Something like this might seem insignificant, or maybe even 'naughty' when done by a normal child. (I certainly would have corrected this behaviour if it were in either of my older kids :P). But for my son, it's beautiful. He's exploring again. And it's even more special for me, because his sensory issues are most potent when it comes to his hands - the palms of his hands, specifically.

It brought to my memory a time about 6 years ago, when my friend's son did this for the first time. He was around 15 months when he did it. My son is now 2 years and 9 months. So it's late for him, but it's oh-so- beautiful.


By the way, I realise there seems to be alot of pics with him in the high chair ...feral as it is haha. But I guess that's because he seems to do alot of new things there, and it's one place I can have him sitting fairly still for a photo LOL.



xx

Line up!

It's a fairly typical autistic thing to do. Line things up. (Although not all ASD kids do this). When I tell people that my son has autism, it's often one of the first things they ask....'oh, does he like, line stuff up all the time?'. Well... he doesn't do it all the time. And he doesn't do it with everything. And in fact, he's only just started doing this recently. But here's a cute shot of what he did with his mandarin segments tonight at dinner. Please excuse the messy high chair tray.... he is still feeding himself (yippee!!!) and therefore he makes a mess of himself and his tray :)





I peel the mandarin for him, and segment the pieces, and check each one for pips before plonking them on the tray in front of him. He took each piece, and instead of eating them straight away as he usually does, he lined them all up in a row first. Then he ate them. Too cute <3.

Sometimes, I need to work at breaking some rigid patterns. Other times, they are as innocent as this. And I just think; 'Honey, if it makes you feel better, you just go ahead and line up your stuff'. I figure, better that than screeching all day or banging his head or something. It could be much worse.



xx

Exploring

I love it when my son takes an interest in his environment. This is supposed to be what regular kids do. They check out their world. I remember back in uni, doing a unit on attachment in children - what was healthy and what was indicative of anxiety or other issues. A baby/toddler with healthy attachment is one that takes a small amount of time to warm to their environment, and then begins to explore their surroundings by venturing away from their caregiver (usually mother) and returning to her at various intervals. Like the caregiver is 'home base'. I can't cite sources off the top of my head though, and frankly, I can't be bothered looking for them. But that much I do recall from back in my uni days.

So when my boy explores his environment, and makes a discovery, I share his excitement in every way. It's wonderful! For so many reasons :).

Recently, we were out having dinner at my sister's house. It's not as though we never go there however, my sister's place should be a familiar place for my son. But he has never ventured beyond the bottom level. This time though, he decided to check out what was upstairs.



It seems he discovered how to get up the stairs by himself, and when he got there, he found the walkway to the upstairs lounge room. He was delighted by this discovery! He spent most of the evening running the same circuit from my sister's room, past his cousins' rooms, and along the balcony/walkway to the lounge room, and back again. You could hear his happy noises as he did his thing up there. It was very cute.


The problem was trying to get him to come back down to eat his dinner hehehe. We managed :)





xx

Happy happy days

My little man has just blown me away this week. You might recall the last post about him starting to feed himself? ....well, I'm very pleased to report he's still doing it!! And better yet...he's even starting to scoop up the food on the spoon himself!

I'm going to insert a million exclamation marks now, just to emphasise how totally, completely, speechlessly, do-a-dance-on-the-spot, over the moon I am.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well ok, not a million, but you get the point. And seriously, that doesn't even begin to describe it!

I'm so happy, I honestly can't find the words. This looks like it really is a permanent step. I can't begin to tell you how much it means to me, that he is feeding himself. Just last week, I would have been thinking about how I was going to manage each evening, trying to spoonfeed him, and the baby (she has started solids), and sort out the big girls, and eat dinner myself, and ugh! It's all a big pain. But no more! Just in time - just in time because the baby's routine is starting to move in sync with the rest of the family - just in time, he starts moving into this new phase of independance. That he should have been doing this 12 months ago doesn't matter anymore. He's doing it now and I couldn't be happier! This has cleared away a little bit more of that huge dark cloud that hides my visions for his future. I can dream for him again, a little bit more anyway. There is still much that is difficult to see, but this much...this little bit here has opened up. He's feeding himself! Woohoo!

Another little thing he blessed us with today....for months now, I have been using some makaton signs with him. (Makaton, for those who don't know, is a form of sign language that can help non-verbal children communicate). This morning, he came into the master bedroom where his Papa was still in bed. He climbed up onto the bed and started bouncing and jumping and playing on there. It was cute, so I played with him a little bit. Tickles and falling on the bed and such. Then I got up and said very casually, "come on mr man, lets go have breakfast". Well. He sat up on the side of the bed, and made the sign for 'finished'.

"OMG!!" I said to hubby; "did you see that?!"
"Mm-hm". He nods.

I said to my son; "yes honey, we are finished playing here, lets go eat breakfast". He hops off the bed and toddles into the kitchen with me! He did NOT resume playing at all after signing for 'finished'.

I'm sorry, I'm rapt. And amazed. And happy! I could scream! Aaaaaaaaahhhh!!!!!

The thing is: I don't know if he will do that signing again, or if he did it just that once for some reason. But it doesn't matter too much. I know now, that months of signing to him is paying off. He is understanding the signs. Understanding me! All of this makes the bridge of communication between us easier. And anything that does that is good.

So yeah, while some parts of this week have been trying, for the most part, it has been a very good week for developments with my little man. Happy happy days! :)



xx

Highs and Lows

O my goodness, what a day it has been. Talk about a roller coaster! I woke up today and did the normal things I have to do in the morning to organise all children for breakfast, school, nappies, etc. When I got home from dropping the big girls off to school, I just felt really good for some reason. Great in fact. This is rare for me. I had a terrible nights' sleep. (I woke up at 4:30am to a spider crawling on my bare arm, and the racket I made trying to brush it off woke the baby, and it was all downhill from there). So I was pretty sleepy, but still, for some obscure reason, I was really looking forward to today. No idea why.


Well, today my beautiful boy decided he would begin feeding himself with a spoon! Amazing! Here's the catch though: I have to put the food on the spoon first. Once I do that, I can sit it back down in the bowl, and he takes it from there. It was very cute. He would pick up the spoon with both hands, and face it towards himself. Then he would investigate the contents for a few seconds, and then go ahead and feed himself! I am rapt! I was almost beside myself with excitement over this, but I still managed to get a pic or two :).



Obviously, that was the high of the roller coaster. The low was that for much of the day, he screamed. It was a new sort of scream for him. He would start low, like a croak, and gradually - or not so gradually sometimes - work his way up in pitch to a scream. Just to be clear, this was/is not a sensory thing with him. He did this when he was frustrated, wanted attention, or when things were not going his way today. Admittedly, I was busy trying to get other things done (like tidy my desk which is piled up almost 1 foot high, literally, with paperwork :S ). I also had a cranky baby who refused to sleep properly today. And her grizzliness only exacerbates the boy's irritation. So I didn't really have time to sit down and play with him much today. But as you can imagine, it was all very annoying and frustrating for me as well.

And no, I still haven't been able to finish tidying my desk. But at least I managed to sort it into 3 categorical piles, haha!

But anyway....my boy just might be on the way to feeding himself finally! Dare I dream of the day when I no longer have to spoon feed him....? Sometimes I'm too scared to hope too much, because often, he does something new once, or maybe twice, and then just stops doing it. I really REALLY hope this is not one of those things.





xx