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.

Strong Boy

 Erik is now 9 1/2.  Young, but not so little anymore.   I'm not such a tall lady myself... 5'2" on tippy toes... and my boy reaches well and truly up to my shoulder.  He's a skinny kid, and this has always worried me a little.  But our Paediatrician and family doctor both say he's well within normal range for his weight.  It is likely he is just following the genetic growth patterns of his father, (who turned out to be a solidly built 6'1" man by the time he was in his mid 20s), but when I see my sons ribs front and back it still freaks me out a little.

However, skinny doesn't necessarily mean weak!  This kid has a grip like a vice, and when he grabs my wrists to pull me over to some place in the house it can be really hard to break free.

Thus I found myself employing Krav Maga moves to release myself from his hug this morning, which was more like a headlock down in the arms of a 9 year old boy.  I just couldn't break free the usual way.  I'm constantly grateful that my son is not aggressive by nature, because even in his gentle interactions, he doesn't know his strength, and it seems he just doesn't have the comprehension to grasp that he needs to use a gentle pressure when dealing with his mum and sisters.

As mum to a special needs boy, there is a constant tickle at the back of my mind of how I am going to care for him when he is a grown man.  Even the tender age of 12, I have concerns for.  I try not to worry too much about this, and just take each day as it comes.  I try to remember that there is every possibility that he will change/improve/develop to a point where these things are no longer a concern.  But I can't deny the measure of progress to date has been precious little, where each teeny tiny developmental step is celebrated in a big way around here.  What if this doesn't change at all?

He fights me when I must brush his teeth.  How will brush them when he is bigger?

How will I shave him when he needs to start that?

How will I keep him off the roads when we are out and about?

How will I shower him when he is taller and more muscly than me?

Will he be using the toilet properly by then?

How will I defend myself and my daughters from his pushing at the rare times he does get frustrated?

What is going to happen when puberty hits and the hormones affect him?

The questions are always there.  Sometimes I worry, sometimes I don't.  Sometimes I feel resentful at being in this situation at all.  But most of the time, I just trust that God will take care of things, and my job is to simply do the best I can to plan for the future.

For some reason, he seems to prefer his collar turned up.  I keep finding it this way after fixing it several times during the day.  Fonzie from Happy Days anyone?

Blocking his ears in anticipation of crossing the train tracks on the way to school.  He does this every morning and afternoon, whether or not there is a train coming!

xx

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

A Bug Snack

We blew in through the front door, my four children and I, after a long day out.  It was already dark outside, but I still had to get dinner sorted to feed everyone before baths and bed.  I dumped my handbag, and the red bag that I use to carry my sons various items of need, on the floor in the kitchen.  Erik was at me already looking for head pressure.   And then I spotted it;  a little brown cricket on the floor in front of the fridge.

I don't know how it got in, but I thought it might amuse my son to see it jump.  He liked things like that - jumping and sudden movements made by critters and people.  So I brought him a little closer, nudged the cricket with my toes and said, "Look Erik!  It's a cricket.  Watch him jump."

The cricket did not jump.  It just walked away a little bit.  I nudged it again.  This time it jumped.  Ping!  Hehe.  My son, who hadn't seemed to be paying attention, suddenly knelt down on the floor and tried to pick it up.  The little cricket kept crawling away from him.  But he chased it down.  "No bubba!  Don't touch it!"  I exclaimed in mild disgust.  I didn't expect him to react like this!  This is a kid with sensory aversions when it comes to his hands!  "Don't touch it honey, just look at it.  It's a cricket.  It jumps."  I went to nudge the cricket with my toe again.  But Erik had other ideas.  He went for that cricket again, and this time, he got it.

Sometimes, when my son is amused, he gets this curious smile on his face.  Teeth showing and eyes squinted, and he shakes his head slightly too.  He had this look now, while he waved this poor cricket up and down as thought it were flying, pinched between Erik's thumb and forefinger.

"No!"  I cried, trying to slap it out of his hand.  Then I paused, and thought; why worry?  It's just a cricket.... it can't hurt him.  My innate repulsion of bugs was just getting to me.  I needed to calm down and let him explore nature.  Yes.  Calm down mum.  It'll be 'right.

But it wasn't 'right.  Just as I was trying to talk myself into this being ok, cricket still pinched in this fingers, he went for his mouth.

"NOOOOO!!"   I shrieked so loud that I'm sure the neighbours must have thought something funky was going on at our house.  This time, I did slap it out of his hands.  Taking a deep breath, I said,  "Just look at it bubba, watch it jump, ok?"  But while I was speaking, he was down on the floor again trying to grab this poor traumatised cricket who was desperately making his getaway to under the fridge.

Erik reached in after it.
"No bubba!"
Erik pulls out his hand.
"No!"
Hand goes straight to his mouth and then comes down flat, no bug in it.

I can do nothing but stare in horror.  A little crunching sound reaches my ears.  I want to cry.  I need to do something.  I should reach into his mouth and pull the little critter out.  But I can't.  I just can't do it.

I let out a slow, horrified, panicked wail.  I don't know what to do!!  My flapping, panicking hands land on my face in shock.  I just don't know what to do now!  What if it was a spider he ate?  I'd have to pull it out then!  Have to!  But I can't bring myself to put my fingers into his mouth and touch a wriggling, leggy, half crunched cricket.

What kind of a mother am I?  I am a failure!  How could I just stand there and not pull the cricket out of his mouth!  My stomach is turning.

My son spins around a few times on the spot, then walks away as though nothing has happened, leaving me in a state of mortified shock.  He's fine.  Perfectly fine.  I, on the other hand, am totally freaked out right now.  I walk around in the kitchen trying to focus on dinner, but I can't.  I'm too freaked.  I call my husband.  He laughs.  I call my sister and mum, they laugh.  Everyone tells me he will be ok.  My brother in law who is from Uganda tells me that the kids back home love eating crickets, and do so all the time.  They are nice and crunchy.  I wail a bit more.

It doesn't help.  I walk around in a semi-freaked out state for the 24 hours or so, and all I can think is, why?  Why?  Just....why?  How?  How is it that this kid will not eat pieces of meat or vegetables in a stir fry, or steak, or roasts, and many other delicious foods, but he will eat a CRICKET, in a heartbeat!?   Why?   Just....rsflkdjsoisfjdsoifjoeji.....erghh!  Why??!

Next time a little cricket drops in to visit, it will promptly be shown the door, before my son can treat himself to a bug snack.



Weeks later.  Still freaked.




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