Sunday, October 6, 2013

It's The Big Ones That Count!

Brushing Erik's teeth has always been a challenge.  We manage to do it, but even from the outset, it has evolved much differently to the girls.  These days, I need to practically get him into a headlock with one arm, fighting off (or desperately trying to hold down) his arms with that same hand and brush his teeth with the other!  It is very difficult - fast becoming impossible - for me.  I have considered employing the use of a straight jacket at times.....

As a toddler, getting anything into his mouth was extremely difficult, and to be honest, dental care was not high on my priority list in those early days.  Toilet training and speech development was.  I had a lot to deal with at that time:  A new diagnosis and a newborn baby - both those things are enough all on their own.  So teaching Erik to brush teeth was not hugely important.  I never expected him to have sensory issues around it.  There was a lot I had yet to learn about Autism and it's many manifestations.

But it didn't take long for me to recognise that Erik had sensory issues to do with his mouth.  The first and most apparent thing, was his aversion to anything rough, crunchy, chunky - basically anything other than smooth and uniform textures.  This first became obvious with his eating habits, and later, with the things he would choose to mouth on.  He never chewed things at first, he would just lick smooth surfaces.  Basin rims, windows, table tops, smooth plastic toys...soap.  No wonder he couldn't stand having a toothbrush in his mouth!

I began the process of desensitising him a few months after diagnosis.  With advice from our speechie at the time, I began by rubbing a wet finger along his gums, being super careful to stay away from any biting! (This was no problem at first though, he never did go for a bite).  What he did do, was vigorously push my hand out of his mouth and away.  But it didn't take long before he would tolerate this - maybe a couple of weeks?  I started very, very small... only a couple of seconds at a time.  As much as he could handle.  As soon as he resisted it was over.  I didn't want to make it an unpleasant experience.  

I was supposed to then advance to using a face washer to rub over this gums, but I found this to be very impractical.  He didn't open his mouth wide, and the washer would really limit movement around his gums and was just too chunky to fit in there.  So I scratched that idea.  As chance would have it, this was the time he started picking up items to mouth on as he was playing.  I grabbed this opportunity with both hands!  Using a baby toothbrush - the silicon kind with a few little bumps on it - I introduced him to a new toy to mouth on.  At first, he didn't take to it - he is always initially averse to new ideas - but it wasn't long till he did.  

As he mouthed on this object, I would come along and move it gently around his teeth once in a while.  After this, we graduated to the silicon 'brush' - just like a regular toothbrush, but the bristles are silicon, so much softer than the normal bristles.  And of course after this, came the normal, toddler toothbrush.  At this point, he was allowing me to brush his teeth for him - an amazing achievement!  He would have been about 3 1/2 at this point, so it took the better part of a year to get there.

Introducing toothpaste was no big deal!  I was very lucky that Erik didn't have a problem with the taste of it - but then, I'm not sure I should have expected differently when he would happily eat soap, just for the texture!  But we started with the thinnest swipe over the bristles anyway- he did notice the difference, but it didn't deter him at all.  So I was able to increase the amount to the right size within a couple of weeks.  There was, and still is, no such thing as 'rinse and spit'.  Erik cannot spit.  Or blow bubbles - a similar activity from a motor planning perspective.  So, reminiscent of the very first finger swipe, I wet my fingers and swipe them around his teeth to wipe off as much of the toothpaste as possible.  These days, I have to be very careful of a bite - and it has happened more then once!

All went well for a while...Erik would allow me to brush his teeth, and then he would have a turn.  He would only ever brush the left bottom side though, and getting him to try other areas was a problem.  I think mostly because of motor planning.  But as time went on, instead of getting better, it just got worse.  

I don't know if his sensitivities increased, or what exactly it was that caused it, but little by little, he began to fight me as I tried to brush his teeth.  He would push my hands away and press his mouth shut so I couldn't get the toothbrush in.  But it was strange, he would do this at random.  That is, at first, he was fine with the idea and would allow me to get started, but in the middle of brushing, he would just suddenly rebel.  I could never pinpoint what it was that prompted this - whether it was brushing a certain spot, or length of time, or what.  It was a mystery.  He also stopped trying to brush his own teeth - playing with the brush instead and never actually getting it into his mouth.  Eventually, I skipped that part altogether and just insisted on brushing them myself.  Time constraints came into this too, having to get all children ready for school/daycare in the morning, I just didn't have time to diddle around waiting for him to be ready when he might not be for hours.

And so at this point, things are still pretty much still there.  Occasionally, he will try to brush his own teeth (for a little bit).  He comes willingly to the bathroom to get his teeth brushed - partly because of routine, and partly because, I guess,  he really doesn't mind too much.  It's almost an automatic or involuntary reaction for him to push the brush out of his mouth.  Although it's frustrating, I still think he does well to allow us to brush his teeth at all.  Some days are better than others - on some days, he can barely tolerate a swipe across each side.  Other days are much better.

I have learned now that he does best with the lower jaw.  The upper jaw he struggles with, and the top front incisors on the outside are the worst.  He fights me every time, he can't stand it.  I feel so sorry for him.  But we must be doing something right, because a dental checkup by the school dentist revealed that his teeth are in very good condition with no work needed.  Win!

Check out those pearly whites :)   I just wish he'd stand still for a minute so I can take a non-blurry photo!

This year, I expect to see him lose his baby teeth.  That will be interesting!  I have no idea whether he will spit them out or swallow them!  And I am concerned about the effect the loose teeth will have on brushing.  I guess we'll cross that bridge when we come to it.  He is getting bigger and stronger, and it is becoming very difficult for me to hold him steady enough to brush his teeth.  I really hope that the habits we have worked hard to instill will take over so that we can continue care of his adult teeth when they come through.  No holes so far, but they are just baby teeth.  It's the big ones that count!


Monday, July 15, 2013

Starting School

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

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

Four kids in the back of the van.

Wondering where we are going.

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

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

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

The bus.

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

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

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

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

Bag on his back = Win!!

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

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

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


Monday, July 8, 2013

Enrolling In School

This post is a little overdue.  Ok way overdue.  We are already halfway through the year!  Still, I think I need to record this, if not to help someone else out who might be going through the same thing, then at least for memories' sake.

It's another long read.  And mostly boring details.

I started the enrolment process early last year.  Around April actually.  The system is so involved that many parents get lost trying to work out what to do.  I was very lucky to have someone who knew how things worked on the inside, and an excellent support worker through EI to help guide me and reassure me along the way.  No special favours, just good and timely information.  Knowledge is power as they say.  Nevertheless, I still encountered dramas and stress along the way.

Step 1.  Enrol at mainstream school.
The first step was to enrol at our local school, just the regular way.  So I did.  I went to the same school my daughters go to and placed an enrolment form.  I mentioned as I handed it in that I was, in fact, looking to send my son to a special school due to his autism.  So they knew from the beginning that this process needed to move further.

After this, there was an interview with the campus principal about the enrolment, just to confirm that Erik needed further assessments associated with the enrolment process.  It was quite some time before I heard back from the school regarding when those assessments would be.  This upset me a bit, as I had made sure to get in early so that my application would be in by first round.  However, we were not to begin assessments until Term 3.  I was very concerned at being put off until then.

You see, places at the special school are limited.  And often, parents do not know if their child has been accepted, until after the school year has already begun!  Not the parents fault, but the system is such that it just works out this way.  Very stressful for us.  Which is why I wanted to get in early, so that I would know for sure whether Erik was in or out by the start of December.  At least that would leave me enough time to arrange an alternative if he was not accepted.

Step 2.  Assessments.
There were three assessments that needed to take place; a speech assessment, a cognitive assessment, and a questionnaire completed by his kindergarten teacher (Vineland).  All had to be less than two years old, which meant that the reports I had from the speech therapist and psychologist at diagnosis time, were already past date.  Appointments were arranged, both to observe Erik, and to speak with the primary carer - me.

I was warned that this would be difficult for me.  Emotionally confronting.  The reason being that we had to look at my beautiful child from the perspective of the worst case scenario.  There would be a focus on the negatives here, not the positives.  Not the potential.  Only the lack and disability.  I was ready.  I was fine.  Sad, but fine.  I really didn't think anything we discussed would be different to what we see every day.  In a sense, we see the worst possible scenario every day anyway, and so, I am already accustomed to seeing 'the worst'.

The speech assessment was fairly straightforward.  Erik does not speak.  There are no words.  There are no sounds that symbolise words.  There is no communication whatsoever, including picture exchange or augmentative devices.  My son cannot communicate except by crying and screaming.  There was no confusion about those answers, the situation here was clear to everybody.

Erik's kinder teacher struggled to complete the questionnaire.  She had been told to answer according to his behaviour in the worst case scenario - Erik on a bad day.  This should not have been difficult though, as his behaviour was fairly constant, and was always at the severe end of the spectrum.  The problem for her was that she had been trained to see the best in children - to see their potential and report on the positives.  So telling it like it is for Erik was hard for her, and very discouraging.

It wasn't until I saw the report for the cognitive assessment, that my heart sank.  Bottom line; it could not be administered.  He was that severe.  And so, our psychologist had to estimate his cognitive abilities:

" attempt to ascertain Erik's cognitive capacity could not be made at this time.  Based on Erik's behaviour and autistic features, as well as extrapolating from his Vineland scores, it is estimated that his intellectual functioning currently falls within the 'Mild-to-Moderately Intellectually Disabled' range."

Wow.  Just wow.  He is so bad they can't even assess him properly.

On the other hand, 'Mild to Moderately Intellectually Disabled' - that is better than I expected!  I always thought there was more inside than people could see.  There is something in his eyes... a bright but elusive spark.  Intelligence and understanding.  Funny how some tests just can't pick up on that.  I could though.  And that one small line - 'Mild to Moderate' - made me smile.  It confirmed to me that I knew my own son well.  I just didn't expect anyone else to see that.

 Part of the Psychologists report.

Step 3.  Educational Needs Questionnaire.
Once all these assessments were completed, and Educational Needs Questionnaire needed to be filled out.  This was to be done in a meeting with the Psychologist, a representative from the Department of Education, the Principal of the school we originally enrolled at, and ourselves as parents.  This was where we agreed on a score for several areas to present to the Department of Education (DoE) as an estimate of his overal needs.  This score would go far to determine the level of funding the DoE would provide for him throughout his school years, and whether he was in fact severe enough to really need to attend a special school.  Once that was decided, a notification would be sent to the relevant school and an offer of placement sent to us.

Part of the ENQ.  Erik needs constant supervision.

The Waiting Game
Right throughout this process I had stressed to all involved that I wanted this done A.S.A.P, because we wanted to be sure of Erik's placement.  In my mind, the autistic school was the place for him, and there was simply nowhere else I wanted him to go.  But if he wasn't accepted there, we would certainly be fine to look into other special schools.  The one thing I knew for sure, was that mainstream school was not for him.  It would be completely pointless.

And so, the ENQ was sent off to the DoE.  Now the waiting game begins.

And I waited.  And waited.  And waited.  And then I began to worry.  The time was creeping by and I had heard nothing.  And so on the advice of my wonderful EI worker, I called the school to see how the application was progressing and if they had heard anything.

Good thing I did.

The Drama
When I called the school to enquire on the progress of our application, I was shocked to hear that they had already been contacted by the DoE, but had decided not to inform me.  The reason being, our application was returned due a missing signature.  A missing signature.  One signature.  Missing.  But, apparently, I was not to worry because it was all being sorted for me.  Oh, yes, by the way, it meant we missed the first round cut off.

"Livid" is a very mild word to describe how I felt about this.  Not only about the situation as a whole, but more so that the school deemed it unnecessary to inform me of this development.  Long story short, we discussed this error of judgment on their behalf and the principal apologised profusely.

But back to that missing signature.....  Way back when Erik was first diagnosed, he had a team of specialists assessing him.  One member of that panel had to be a psychologist, and it was his signature that was missing.  Apparently, he did not sign his diagnostic report.  The school tried to contact the clinic where diagnosis was made, but the psychologist had long since moved on from there. Unfortunately, the clinic staff were less than helpful, and would not forward the details of where this fellow had relocated to.  What made things more difficult, was that he was, in fact, from New Zealand, and quite possibly may have returned there by now.  Seems like we were not going to get this signature.  You can imagine the frustration I (and hubby) were feeling about this time.  I felt like my sons whole future hung in the balance, all over this one stupid signature.

Suddenly, it was vitally important to me that he attend the Autism-specific school.  No other school would do.  The threat that he might miss out on a place due to these delays made me realise that this was far more important to me than I had originally thought.  I began to stress hard.  I cried, and prayed, and poured my heart out to those people I knew who were connected to the school and who understood the process.  I received nothing but the most gracious support from them.

In the meantime, the school principal had tried to contact the head paediatrician who was on the diagnostic team.  She had a previous history with this doctor when he had treated her own children for something many years ago, and they were on good terms.  Nevertheless, it was his receptionist that took the calls and relayed the information, as he was too busy to fuss with an annoying issue like this.  His response was, that 'no such signature was required at the time'.  End of story.  But the DoE would not budge.  They insisted on that signature.  It didn't matter that Erik's case was clear to all - including the DoE by their own admission! -  They wanted that signature.  Red tape much?

I cried and stressed and cried some more - there was no way we could get a hold of that psychologist to get a signature from him - what were we going to do?

My EI worker sent an email to the Autistic school, my SIL called her colleagues at the Autistic school, and our playgroup facilitator, who also worked for the Autistic school, spoke to the principal there. In case you're wondering - yes, I felt this was overkill.  But they insisted, and did not mind.  And so, word was sent back to me that a position was held for him in the school and I was not to worry.  They fully understood the red tape that frustrated everybody, and knew without a doubt that Erik qualifies and would receive funding (eventually).  I was encouraged to go ahead and enrol him anyway, and not to worry about the funding.  In fact, they even sent out the paperwork so I could do so.

This went a long, long way to allaying my fears.  I couldn't thank them enough for going out of their way just to reassure me that he would have a place.  I prayed with a grateful heart thanking God for these wonderful and caring people.  I just found it amazing that all these people were so positioned in my life at just such a time, so that I could find this reassurance - not taking for granted that many other parents simply do not have this privilege!

In the meantime, the assessing psychologist came to the rescue with the application, writing up a new and current diagnostic report for Erik, and signing it, so that the application could move ahead.

April last year.  An Easter treat for my babies - the chocolate is bigger than their heads!  LOL

And In The End....
I assume the funding all came through.  But to be truthful, I have still not heard back from the DoE or original school as to what his funding level is.  We received an offer of placement from the Autism-specific school, and the rest is history, as they say.

He has been there two full terms already, and is loving it.  And I would very much like to know what our funding level has turned out to be.  Maybe I should chase that up......


Monday, April 22, 2013

Toilet Training Day 13 - The Last Day

My husband let me sleep in today.  A lot.  I stayed in bed till after 11am.  He is a treasure.  Last night I complained that I had lost my appetite completely.  Hungry, but there is nothing at all that appeals to me to eat.  It had been slowly creeping on since I started toilet training - I cannot eat when unhappy or stressed - and is a strong sign of depression for me.  That, and not wanting to get out of bed.  So he kindly let me sleep late.

While I was asleep, Erik had poo'd in his night time nappy, and poo'd on the living room floor.  Hubby had put him on the toilet straight after, but I don't know the details of whether or not he showed Erik how poo goes in the toilet, etc.  I found the change mat out on the bed too, so I know that daddy cleaned him up the old-fashioned way.  Oh well.  I guess he didn't know to clean him up at the toilet.  Sitting him on the toilet was a good move though, and I was told he didn't poo very much.

Hubby has taken all the girls to church today, and I am at home with Erik.  It is the second week we miss church because of toilet training.  I hate it, but I can't put a pull-up on him just for church, and I can't send him in with the high risk that he will wee or poo out in kids church or even with me.  So we have had to stay home.  School starts again tomorrow, and I am pretty sure I'll have to send him in with a pull-up on.  But I count that as our efforts for these holidays finished.

On the other hand, I'll send in a note for the teachers asking whether it was worth continuing the no-pants method for the three or so hours after school that he is awake.  I dearly hope they say no.  How cowardly is that.  It's only three hours!  But here is my conundrum:  Is it better to cease this method entirely and keep the toilet training efforts intensive and all out?  Or is it better to carry on, even in a small half-here-half-there capacity, until we achieve success?  I am hoping they can advise me on this, and whatever they suggest, I will go ahead with.  Even though I want to run a mile (or 100) from anything resembling toilet training once tomorrow comes.

About 3pm, I notice the characteristic dance that he does when he needs to wee.  I take him to the toilet and wait it out.  We sing, we count, we play.  I let him stand and walk around rather than sit on the toilet.  It's a wee, and he will need to learn to wee standing up eventually.  He is so strong and stubbourn, I honestly don't know how he manages to hold on for so long!  But eventually, in a moment of distraction, he starts.  He always stares down at himself in shock and disappointment when he starts a  wee without his nappy.  But I gently say "Good boy!" and quickly place the bucket under the stream.  He chuckles again.  So cute.  When he is done, I immediately pour it into the toilet while he looks on.  "Wee goes in the toilet bubba.  Good job!  Now we flush.  Ready, set, go!" *flush*.  I lead him out to the kitchen where he gets a chocolate freckle.  He is very happy to receive it.  Then I go back to clean up the bits that got on the floor.  A small success!

There is nothing more for the next few hours.  But then at about 6pm, I see that same dance.  We are almost finished dinner, but I am still eating mine.  Hubby offers to take him to the toilet, and I gratefully (but with some trepidation) accept.  It usually ends in screams when daddy does this duty.  Sure enough, several minutes later, I hear the telltale screams of a meltdown coming from the toilet.  I leave them be, but after a while it becomes too much.  Erik is upset, and we will achieve nothing this way.

I go to the toilet to check on hubby - I know what it's like trying to handle a screaming boy, so I want him to know that I am here if he needs anything.  I notice that he has Erik sitting on the toilet.  I tell hubby that I don't usually get him to sit for a wee, only if there is poo happening.  Hubby asks how can I tell.  Hard to explain with a screaming boy in the background.  Long story short, we swap places.  Erik is not happy to still be made to stay in the toilet, but I am quickly able to distract and settle him with our usual songs and games.

In a short time, he begins to wee.  He really was busting.  This time, he is standing close to the toilet, so instead of using the bucket, I gently turn him so that the stream flows into the toilet.  Mostly.  Some lands on the seat, and some dribbles in front.  But you get the idea LOL.  Another little chuckle.  I love those chuckles.  As soon as he is done, he tries to back away.  I spontaneously decide to attempt one step further, and try to show him how to 'flick' it clean.  He doesn't want to know LOL.  Maybe that's too much at this early stage.  Never mind.  I gently but joyfully praise him for weeing in the toilet.  Then lead him by the hand to get him another freckle.  Oops!  Forgot to flush!  Never mind.  That's not as important as actually weeing IN the toilet!

Oh. My. Gosh.  Did that just happen?  I mean... it's not as if he actually told me he needs to go, and then purposely wee'd in the toilet, but still!  He wee'd IN THE TOILET!


Back to dinner.  A short while later, I notice he needs to poo.  Back to the toilet, and this time, I get him to sit.  Then it occurs to me that it might actually be bed time, and he has school tomorrow.  I call out the door to ask hubby the time.  Yep.  7:39pm.  Past his bed time.  I don't bother with waiting out the poo - based on our past success rate with this particular venture, I don't think it's worth keeping him up another hour for what will likely be another fail.  So I take him into the bathroom, and shower him, pj's on and put both him and the Baby Miss to bed.

I gently try to tell him that there will be school in the morning.  He regards me with those precious chocolaty eyes.  I don't know how much he understands most times, but this time, I think he understands me.  I guess tomorrow will tell.  But either way, I am pretty sure he will be over the moon to be going to school.   And considering he has been basically housebound for the last two weeks, bored witless and subjected to a massive overhaul in his life's patterns, I can't say I blame him.

As for me....

I am almost sick with relief that these two weeks are over.  And yet, at the same time, I feel as though they have gone so fast.  With the small wee win we had tonight, could there be an imminent success if we continued?

I don't know.  But I do know, I can't send him on the bus with no safety-guard (ie. pull-up).  He has not had a pull-up on for two whole weeks.  Only his night time nappy.  I do hope the act of putting one on doesn't undo everything that has happened over the holidays.  On the other hand, it's not like we've made massive leaps in progress that there would be anything major to undo.  Ugh.  The whole issue does my head in.

I hope the depression that has sunk in over this time doesn't hang around.  I hope it never comes back.  But somehow, I don't think I have seen the last of it.  It's just something that seems to come with this territory. I will have to learn to be stronger.

Tomorrow:  disinfect the couches, floors, whole house LOL.  The rug may have to wait until later in the week when we get a warm dry day.  I want to take that one outside and give it a good wash down and leave it to dry in the sun.  But although the house itself might be able to return to normal fairly quickly, I think I might need a bit of time before the stress of the last two weeks washes away from my soul. I will have to plan something pleasant for myself.  Which is a lot harder than it sounds.

Deep breath, and move on.

....Well done beautiful boy.  You wee'd in the toilet!  Oh, I am holding on to that tiny victory.


Sunday, April 21, 2013

Toilet Training Day 12

I have been up since very early this morning, before 5am.  I just couldn't sleep.  Too much on my mind I think.  So I was already up when Erik got out of bed, which was at 6:30am.  After breakfasting him and the Baby Miss, I took off his night time nappy, as usual.  Knowing it was risky, I lay down on the couch to doze.  I had the bucket close at hand in case it was needed.  But I prayed I wouldn't miss anything due to being sleepy.  He looked like he needed to both wee and poo.  But by this time, I was sooooo tired.  I fell asleep about 8am, all kids up and about.

Amazingly, I didn't miss anything.  He did nothing, though I kept waking up to check.  It wasn't till I was up and about again that he wee'd.  Fortunately I was very close by and immediately grabbed the bucket and caught all but the beginnings of it.  Yes!

He whined a little bit.  He didn't like it this time.  With a gentle and positive tone, I encouraged and reassured him.  Then, he chuckled a bit.  Sweet boy.  It was quite a long stream... he had been holding for some time again.  He seemed to get distracted with what was going on though, and he tried to keep walking away to attend to something else while he was still weeing.  I thought that was a little bizarre, but I managed to keep him there till he was done.

When he had finished, as usual, I went to take it and him to the toilet to dispose of it.  But this time, he would not come with me.  He resisted and screamed and dropped and then stood up and ran off.  I deposited the bucket in the toilet room and went to get him.  But first, a small reward.  I fetched one of his favourite chocolates of all time - a freckle.  One measly little freckle.  It's a big deal for him though. So gave it to him with lots of positive praise about weeing in the bucket.  As he was eating it, I gently walked him over to the toilet to dispose of the wee.  He didn't fight me this time.

School goes back the day after tomorrow.  I don't think we will have gotten anywhere by then.  But I'm sticking it out for two more days.  Just two more days.

About 4pm in the afternoon, I notice a smell.  I have been keeping a close eye on him all day, so I knew a poo was close.  Checking his bottom confirms everything and I take him to the toilet and settle in for a while.  We play.  We sing.  We play some more.  He keeps trying to get off, or stand on the toilet seat.  At one point, Baby Miss comes running by stark naked.  She stops behind me and says "Mum, where's my clothes?"  I look at her, and though I am delighted by her super-cuteness, I ask her sternly "I don't know, where are they?" She says "I don't know" and runs off again.  I call out after her to get herself dressed, even just pyjamas.  She dutifully brings me her favourite pj's and I help her on with them.  At least she is wearing something.  Cheeky little monkey :)

Next thing I know, she is standing at the back door calling out to her sisters, who completely ignore her cries.  Her shouts of this nature always elicit a response from Erik.  And not the best response either.  The situation quickly escalates and I sense a meltdown coming on.  I cannot leave my post, or he will escape, and may possibly poo somewhere else.  No one answers the Baby Miss, and no one heeds my call either.  They probably can't hear it.  I feel like I'm going to snap.

Mercifully, she gives up calling to her sisters, and Erik settles down again.  But I've been pressed a bit more than I could bear.  I can only wait with him another 10 minutes, then I let him go.  The total time has been 1 hour 10 minutes.  I let him outside to play, concerned that he will let it all go out there.  But I am so beaten, I leave him be anyway.

After organising a no-drama dinner for the little ones, of vegemite toast and sliced apples, I set up the Baby Miss in her bubble bath.  While I'm not looking Erik does a wee.  I only notice after seeing droplets down his legs and on his feet.  I haven't found the puddle yet.  It has probably seeped into the rug by now :(.  Missed it again.

A short time later, I hear my hubby exclaim "Ohh... are you doing a poo Erik?".  I hurry over and sure enough, poo.  A little on the floor, and a little on the couch.  I send him to the toilet with my husband while I clean it up.  I find a little more on the kitchen floor.  I check in on hubby with the boy, but he said he is fine to stay with him, so I finish bathing the Baby Miss instead.  While I am washing her hair, she screams.  This elicits a meltdown from the boy who is in the toilet right next door.  I can't help it, her hair must be washed.  I make it as quick and painless as possible.  And check in again on hubby.  But as I check in, I find he has already given up and is bringing Erik out to wash him down.

But distressed or not, I am not satisfied with the short time the boy has spent on the toilet when he literally has poop hanging off his bottom.  So I take over from hubby and take him back in for a little longer.  I only take him off when I realise it is 15 minutes till his bedtime.  I shower him, pj him and put him to bed with his little sister.  Needless to say, he did nothing on the toilet.

I am so brain drained, it's not funny.  One more day.  And I insist on persevering  despite the obvious fact that we have gotten nowhere since we started all this.


Saturday, April 20, 2013

Toilet Training Day 11

Woke to find a small firm poo in his nappy today.  Good he got some out.  We seem to have avoided the constipation issues so far, thank God.  I have let him outside to play, since the weather is lovely.  I couldn't keep him cooped up in here, it's not fair.  Bad enough he has hardly been out for the whole school holidays, except for three trips to the playground.  Cold weather is just around the corner so I want to take advantage of the sunshine.  The downside is that I know he will poo and wee while outdoors and nobody is noticing him.

True enough, he comes in a short while later with poo stains on his bottom.  Never mind.  And this time I don't even bother looking for the evidence!  LOL!  I am sure he has wee'd outside too, as there hasn't been anything today that resembles him needing to go.  So I guess, all in all, there has been nothing for me to catch/train with.  Honestly though, I think I needed the break.  Even though there seems to have been no real training happening, at least he has no nappy on, and so I have avoided that backwards step so far.

What an unremarkable day.  I have managed to catch half a wee that he did while standing on the edge of the couch, but that's it.  There have been no more wee's and no more poo's (or threatened poo's either).

However, we did have an hour long meltdown at dinner due to him being way overtired and nearly falling asleep while waiting for his food.  That was very taxing, putting it mildly.

He is now in bed.  All I want to do is zone out with a book or some mmorpg.  But my daughters need my attention.  I try to put my brain into gear.  Maybe a movie together might be a good compromise.


Friday, April 19, 2013

Toilet Training Day 10

I got out of bed late today.  I spent half the night waking up suddenly and thinking I was having a heart attack (yes literally!) -  I am sure it's all stress related - and so I was very tired in the morning.  But also, I just didn't want to face the day.

His nappy was not very wet when I took it off.  I have been very vigilant with him all day, because there is no more 'pattern'.  I took him to the toilet to wait for a wee at one point when he was walking around agitated.  Stayed in there for ages.  Nothing.  So I brought him back out again.

I sat down right beside him with the bucket and towel within reach.  I stayed there doing nothing, just being at the ready, for ages.  Still nothing.

I went to get a coffee for myself and sit down to read some news - a five minute break if you like.  I would get up to check on him literally every minute.  Nothing.

Then, when I wasn't checking on him, I hear a splishing sound.  He's weeing!  Sitting down on the entertainment unit again!  Lightening fast, I grabbed the bucket and ran to catch it.  But by the time I got there, he either stopped the stream, or was finished.  Fail.  I want to cry.

Nothing else for most of the day, and I watch him like a hawk.  I get nothing done all day because of it.

At dinner time, I warm up leftovers for the kids to eat, and then put a pair of jocks on Erik so he can sit down to have his dinner. (Yes!  I managed to get him to wear them again!  Win!).  He sits and starts to eat, but keeps getting off his seat.  I get a phone call from my mum that requires me to check something in another room.  When I get back, I find he has wee'd.  Sigh.  I clean him up and put fresh jocks on him and put him back to his dinner.

He is halfway through eating when he decides he can't sit anymore.  I know what is happening.  He needs to poo.  It's the same time as hit him last night.  I let him off and watch him closely while I try to quickly put some potatoes into the oven for our dinner.  Suddenly, I catch a light whiff....

I run over to him and check his jocks... yep.  Little bit in there already.  Calmly walk him to the toilet, take his jocks off and sit him down.  I call out to my husband on the way if he could put those potatoes in the oven for me.  I brace myself for the long haul.

I don't know how much time went by as I waited in there.  Erik on (and off) the toilet, me sitting on a step stool directly in front of him to keep him on the toilet when he tries to come off.  I don't know how long we were in there, with the odor of poo assaulting my nose, but there was nothing.  Nothing, nothing, nothing.  He holds on.

All at once, my strength and resolve crumbles.  I begin to cry.  I weep and I sob like I haven't done in a very long time.  The tears keep coming and I can't stop.  I hope and pray no-one else in the house can hear me weeping.  I am glad that my son can't seem to understand the emotional break-down occurring in front of him.  I can't stop.  I just can't stop.  Every time I take a breath, I release it with massive sobs and heaves.  It's just too much.

I try to clean him up while I'm weeping, so I can let him out.  We have been in there for ages.  He won't let me clean his bottom.  I break down into fresh sobs again, and put him back on the toilet.  Crying my eyes out, I just don't know what else to do.

A short time later, he comes off the toilet and I leave him be.  It's pointless anyway.  He's not going to poo there.  Maybe he will poo standing up?  He leans over me onto my lap instead, his poo-stained bottom not far from my nose.  Tears are still rolling down my face as I take the opportunity to calmly clean his bottom with a wet wipe.  Finally, I can let him out.

I meet my husband as we open the door.  He takes one look at me and asks if I'm ok.  I don't even remember what I answered with.  I ask what time it is though, and mercifully, it is now bedtime for Erik.  I go into the bathroom to wash the poo off my hands, scrubbing hard to get rid of the smell that always seems to linger.  Noticing my reflection in the mirror.... I look a right awful mess.

I wipe my face and eyes and re-tie up my hair - Erik had pulled at it so it was all frizzy.  A little better.  I put his pyjamas on, daddy prays and we kiss the little ones goodnight.  I still have to face my mother, who comes to collect some things for my daughters who are sleeping over there, and I still have to cook dinner for the rest of us.  All I want to do is bury myself in bed and hide from the world.


Thursday, April 18, 2013

Toilet Training Day 9

I am so incredibly discouraged today that I feel like giving up.  But being a stubbourn girl (I wonder where the boy gets it from *wink*), I set out to try for two solid weeks, so that's what I'm going to do.

Just to prove to me that he is not going to stick to the pattern I thought was forming at the start, he wee's on the couch at 11:15am.  And yep, I missed it.  Upset doesn't even begin to describe.  What is wrong with me?  Why am I not more vigilant?

Later in the day, we have one of those rare times where Erik is actually engaged in an activity, playing with a car set without anyone assisting or structuring the play.  I notice him stop playing, and start doing the hunch and grunt walk.  Uh oh, he needs to poo.  I rush over and catch a teeny whiff which confirms my assessment.  Quickly I walk him over to the toilet, gently explaining that poo goes on the toilet.  He comes with me and sits down, although resistively.  He really needs to go, and I'm praying that he hasn't held it enough to stop the process by the time we got there.  I start quietly counting.  He keeps trying to get down.  I notice his breath smells like eggs, and I'm worried.  Is he getting sick from holding it in too much?  Or is it just that I have been struggling to brush his teeth lately? - he's so big and strong now, it's really hard for me to manage him.  I do hope we don't have a case of gastro starting up that is going to sweep through the house.  I wish he could tell me if he was feeling sick.

I count to 200.  Nothing.  He has held it in again.  I let him go.  Maybe I can catch it later.  And pigs might fly too.

The weather is pleasant again today, and I can't not let him go outside to play.  I just know though, that he is going to let it go outside somewhere.  I let him out anyway.  My prediction is true.  I bring him in and clean him up and keep him inside instead.

I can see that he needs to wee, so I grab the bucket and hang around him.  "Wee, Erik?"  He hunches and presses at his bladder and grabs himself.  He is uncomfortable.  I take him to the toilet and we wait in there for wee.  It doesn't happen, so after 10 minutes, I let him out again.

I stop to make myself a coffee.  As I walk over to the TV to change the program for the kids, I step in something wet.  Great.  Missed it again.  I think maybe I need to go back and adopt my first days' policy of 'drop everything and just follow him all day'.  There is nothing remotely like a pattern happening now!

Not long after, I notice a smell and a closer look reveals a little bit of poo hanging off his bottom.  What!?  There were no signs this time!  He was just playing with his alphabet book literally right in front of me!  I grab him and sit him on the toilet, but not before that little piece falls off and he steps right in it.  And then on the book.   At the toilet, he holds it in again.  I clean his feet and bum and let him go.  I am so discouraged right now I just want to give up.  It would be so much easier to just stick a pull-up on him :(.

Easier for now.  I don't want to be cleaning up a 40 year old man, and if we don't do this now, I will be.  I will plod on.

While I am cooking dinner, he quietly wees on the couch again.  I only notice when I hear a dripping sound that is wee dripping down on the tiles.  Too late for me to catch it or do anything.  Sigh.

He does the poo-smears-on-the-bum trick no less than 6 times today.  I have watched him closely the rest of the day, and every time he starts hunching and holding his tummy, walking around with that look of concerned concentration on his face and grunting quietly, I quickly and quietly take him over to the toilet and sit him down.  He has become more compliant with coming to the toilet now, but will still get up and walk away if I leave him.

Every time I catch him starting to poo and take him to the toilet, he stops.
He.  Just.  Stops.
I don't know how he manages to hold it in, but he does.  And I will stay at the toilet with him for a goodly amount of time - 20 minutes minimum - but not long after I let him go, he is hunching and grunting again.   The last 4 or so hours have been utterly overwhelming for me with this pattern.

The last time I put him on the toilet and then let him off again (20 minute stint), I left him to come over and update this journal just quickly.  I left him for less than five minutes, eating his dinner standing up at his place rather than sitting on his stool.  It was no more than five minutes, no jokes, and when I went back into the kitchen, he had pooped.  We had just come out of the toilet less than five minutes ago!  Trying ever so hard to conceal my despair, I gently showed him the poo at his feet.  He looked at it, and stood awkwardly, keeping his legs firmly together.  He really didn't want me wiping his bottom again.

I brought the bucket over, and using tissues, scooped up what I could, showing him each time.  "Poo!" I said gently.  He watched.  Then I walked him to the toilet and showed him again as I tipped it in.  "Poo!  Poo goes in the toilet".  I flushed.  He didn't even flinch.  That's progress I guess.

I took him straight into the bathroom and washed him down.  He still didn't want me to clean his bottom.  After the craziness we'd both had of almost poo's and so much wiping that afternoon, I couldn't blame him.  As gently as I could, I cleaned him up, dried and cuddled him.  I put his night time nappy and pj's on, and, since he had mostly finished his dinner anyway, I put him to bed.  He went straight to sleep.

I am utterly deflated tonight.  This is so exhausting and demoralising.  I just can't get this right.  I am sure I am expecting too much too soon, but still.  I can't help feeling like an utter failure.

I want to look at the bright side:  He is getting used to pooping and weeing without the security of a nappy on.  This is good!  I am also saving a lot of money on pull-ups.  This too is good!

But the smell of the house and the unsuccessful day are a constant reminder that really, I still haven't gotten anywhere with this.

I was looking forward, all day today, to doing some cake when I had some time.  It cheers me up, and it is something I love to do.  Chocolate fudge cake with espresso ganache and hazelnut praline buttercream.  I was going to cover it with fondant and have a play with some decorating techniques before enjoying the cake with the rest of my household.  Now, even though the kids are in bed and I'm free to play, I'm too depressed to find the motivation.  I just want to go to bed and cry.  I really hope tomorrow is better.


Wednesday, April 17, 2013

Toilet Training Day 8

No poo this morning.  None all day in fact.  I guess yesterdays purge cleaned out his system.  But I didn't manage to catch anything today in terms of wee either.  He wee'd once in his pj pants, early in the day when I wasn't expecting a wee from him.  That was the only wee I have seen of him today.  He is tipping all the patterns upside down, so I can't predict anything.  Stressed out doesn't even begin to describe my state at this point.

At the end of the day, in the middle of dinner, I could see that he really needed to use the toilet.  He got up off his chair and refused to come back.  I left him because of my suspicions.  Watching him as closely as I could while managing the Baby Miss, I realised I could smell poo.  I found although he hadn't actually done any, there were smudges on his bum.  It was as though his body was desperately trying to make one, but he was hunched over walking around and doing his utmost to hold it in.  And doing a stellar job of that.  His belly was rock hard.  He wasn't distressed, but he was whining and obviously uncomfortable.  I took him to the toilet to wait it out, hoping that Baby Miss wouldn't get into any mischief while I was otherwise occupied.

He danced around and I waited.  I held the bucket out for wee and waited.  He didn't like that, so I put the bucket down, and waited.  Then I sat him on the toilet, and waited.  Then he didn't want to sit anymore, so I let him off, and waited.   We sang songs, and I waited.  I spoke to him quietly about making poo on the toilet, about him being a big boy now, about how he would be ok.  He croaked in response (and I nearly hooped and hollered for joy!)  "No - mm".  Twice he responded that way as I quietly spoke to him.  But - and here is the thing that always gets me - it could have been something else...

You see, the last few days he has been singing to himself "Noma, noma, A B teeeth!  Neh tah wer eh si weh meee".  Beautiful.  Absolutely beautiful to my ears and delightful to my heart.  A little something to cheer me in the middle of this toileting nightmare.  So yes, it could have been that too.  Still though, I took it as a response to my quiet talking to him.  No mum, I don't want to use the toilet.

So I waited and waited, all the while with one ear listening to the Baby Miss chatting at us from behind the door (oh, she never stops, bless her).  Then I sat him down on the toilet again and began counting as I waited.  Quietly counting in his ear, he seemed to be able to settle.  I counted all the way to 200, he loved the pattern of it.  But still nothing.  I let him go.  We had been in there 40 minutes.

I showered him, put his nappy and pj's on, and put him to bed.  Failed again.


Tuesday, April 16, 2013

Toilet Training Day 7

No poo this morning again.  Haven't seen anything like a wee for most of the day either, so I decided to take advantage of the pleasant weather and let him outside to play.  As soon as I did, he let go.  Poo that is, and likely a wee too, let us just assume.  He came inside soon after and I could smell it.  I quickly went outside to see if I could find the package  but it was nowhere to be found!  Another phantom poo.  The remnants on his bottom were the only evidence.  I took him to the bath to clean him up and went outside to try to find this poo again.  Didn't find the poo, but found a butt naked little Baby Miss frolicking around the shallow kiddie pool we use for our dog's water, in full view of the construction workers over the back fence!

Oh the joys.  I took her inside to dress her and sort her out, secretly taking much joy in the fact that she can actually undress herself if she wants to.  When I returned, I could smell another poo.  What?  Again?!  Errgh!!  Back we go to the bath to clean up.  And then I went outside to see if I could find these phantom poos.

While I was out searching, I located the fresh one almost immediately.  Our beautiful dog, who was happily following me around also located it.  And then she showed me exactly why the phantom poo's were phantom.



Yes, it's exactly what you think!  She took one sniff, then picked it up in her snout, quickly catching it when it slipped, and guzzled it down without a second thought.  I almost threw up on the spot as I watched her trotting away, her tail wagging merrily.

Later that afternoon, he started to wee behind a couch in the lounge room.  It was Miss Jane who alerted me to it, the clever girl.  But bucket was nowhere to be found, so I missed it.  I was really annoyed.  How could I just misplace such an important thing?

In the evening just before dinner, I managed to get a pair of jocks on the boy.  Win!  This is definitely a good step.  However, just as I was serving up dinner, there was that telltale whiff in the air.

Oh no.....

Poo in the jocks.

For the third time that day, I cleaned him up.  At least he is clearing his system.  I would rather that than have constipation issues on top of everything else.

Trying to look on the bright side:  The one benefit from all this toilet training is that it is saving a lot of pull-ups!

I put on his night time nappy, and put him to bed.  What a day :(


Monday, April 15, 2013

Toilet Training Day 6

No poo this morning.  I'm a bit disappointed.  He has been very irritable today, and I'm pretty sure it's all about not being able to 'go', or rather, choosing not to 'go'.  I have put him on the toilet a little more today.  Trying to pick up my game in that area.  So hard.  He still fights it, but not as much.  I still dread it though.

We put pants on and go to the park.  He stays dry for the whole time we are there, which is about 1.5 hours.  Good boy!  A couple more times sitting on the toilet through the day.  To no avail.  I suppose I have to revisit at the aim of that:  And that is to encourage him to be comfortable and settled on the toilet.  Not so much to have him poo or wee there already.  I guess.  Wee maybe.  Ugh.  Who knows.  I'm so confused and discouraged right now, I can't even think straight.

Don't need anymore details of the day other than the fact that he went upstairs to wee again.  Anywhere where nobody will notice him is what he aims for.  So it was upstairs, on a desk on the landing.  He likes to climb stuff, so he was on the desk when he wee'd.  I had only just got home from an errand, so didn't have the chance to actually follow him when he first went up there.  I had looked around and asked "Where's Erik?".  Nobody realised he wasn't actually in the room, or the next room.  And so I missed another wee, and I feel like we're not getting anywhere.

Depression over the toilet training and even my life's role as a carer to this amazing little guy are sinking in.  My life - our lives - are so limited because of him.  I wouldn't swap him for anyone, and I wouldn't undo him if I could, but oh sometimes it is hard.  To watch life passing you by with things you want to do and achieve and you know you can't, because you have to be on call for this precious life.  And I feel guilty for feeling depressed.  And it all goes 'round and 'round.

Later that evening, I notice he needed to wee again.  So I take him to the toilet.  I let him stand around rather than sit on the seat.  I sit down on a little step stool in there and talk and play with him.  He finally got so desperate, he just couldn't hold on anymore.  As soon as the wee stream started, I grab the bucket to catch the wee.  "Good boy Erik!  Wee!  Good boy!"  I gently try to encourage him.  He did try to push the bucket away this time.  Not very strongly, but still.  I am so disappointed when he does.  It feels like two steps forward, ten steps back.  Still, I caught most of it in the bucket and then emptied it straight into the toilet while he watched.  "Wee goes in the toilet Erik.  See?  Look.  Wee in toilet".   I gave him a chocolate freckle, and then, being that it was bedtime, put his pj's on and put him straight to bed.  I'm emotionally exhausted.   Very glad I caught at least one wee today, but so disappointed in all the missed ones.


Sunday, April 14, 2013

Toilet Training Day 5

Again I woke to find poo.  At least he is moving things a little bit so he doesn't get too constipated.  I won't be too fussed about chasing him around today, as I expect a wee around 4:30pm - 5:30pm.  That seems to be his pattern.  I do need to try and put him on the toilet more though.  Really need to pick up my game in that area :(.

The weather is blessedly pleasant, so I let him play outside.  About 2pm, Baby Miss comes running in to tell me "Erik made wee!"  Oh no, I missed it!  Asking her where he made wee doesn't help, she just keeps telling me he made it on the toilet, which I know is impossible.  A brief inspection outside shows me a small foamy puddle on the concrete.  I hose it away.  Nothing more I can do really.  He has resumed his walking around and it's a bit too late to show him and talk to him about it now.  I'm angry with myself.  And so frustrated.  He just won't wee when anyone is watching!

He is very whiny and irritable today.  I think it's because he is really starting to feel uncomfortable.  He hasn't been able to wee or poo at ease for five days now.  I imagine he is feeling rather blocked up.  I feel so sorry for him.  The whole thing is breaking my heart.  If only you could just sit on the toilet kiddo, and let it all go there.  If only you could understand that that scenario would be the ultimate in control for you!  Depression starts to overwhelm me.  This is life with my special needs kid.  Not just the practical limitations, but the heartbreak and emotional turmoil of knowing your child is suffering, even when they don't necessarily know.  How hard it is to know that things could be so much better if he could just relax.

Nothing else for the rest of the afternoon.  Then, as we are all sitting down to watch a movie and eat dinner for family night, he wees.  He is sitting sort of sideways on the entertainment unit, playing with the iPad.  There is a shelf and a drawer underneath where he is sitting.  He just lets go while he is sitting there, and it gets into the drawer underneath.  Which had wrapping paper in it.  Guess that has to go in the bin now.  I jumped up to catch what I could, but he refuses to move from his spot, so it was really hard to position the bucket underneath him to catch the wee.  Nothing more to do but clean it and him up.

He is very irritable.  Keeps getting in front of the TV so the girls couldn't see properly, whining, laughing, screaming and climbing on us, and just generally disrupting everything.  I take him to shower and get him ready for bed so the others can watch the rest of the movie in peace.

Another failed day.


Saturday, April 13, 2013

Toilet Training Day 4

I woke up to find another firmish poo today.  I think a pattern might be emerging.  Poo early in the morning before I can change his nappy, but won't wee till the late afternoon, around 5pm.

I haven't been as vigilant in putting him on the toilet.  Whenever I think about it, I find this sense of dread wells up so heavy, that I put it off.  And so most of the day has passed without me putting him on the toilet.  I hate myself and my weakness.  This is so hard.

Sure enough, at about 4:30pm, another wee.  I caught it this time - yay!  This time (and this is only the second time I have managed to catch one since we started), he didn't cry or try to move the bucket away.  He stood there watching the stream flow in, and even chuckled at it at one point.  Yes!  This was the place we were at last time I tried toilet training, only it took me ages to work up to that point.

Nothing else for the rest of the day.  I showered him, night time nappy on, and put him to bed.


Friday, April 12, 2013

Toilet Training Day 3

I woke up to find a small but firm poo in his nappy.  I'm happy that he got to release something, at least it will avoid him being completely 'blocked up'.  I cleaned him up at the toilet - quite difficult to do when he is squirming and trying to run off.  I always try to show him what I'm doing; how the poo goes in the toilet and we flush it all away.  He never wants to look.  Wants nothing to do with it!

A little time later, I notice he is not in the vicinity and start making my way upstairs to check where he is.  On the way I am met by a fast walking husband holding the boy a little out from him and quickly heading towards the toilet.  The smell that wafts past me leaves no questions.  Poo.  There is a little bit hanging off his bottom.  Dad sits him on the toilet and keeps him there, despite his protests, while I go back upstairs to search the area for any 'remnants'.  Thankfully, and amazingly, there is nothing.  Dad seems to have picked up on it right at the beginning.

A little piece that was stuck to the boy's bottom drops into the toilet, and we make a big happy deal about it.  But he is still upset and protesting, and refuses to do anymore.  I clean him up, and let him go.

After the poo incident, I am super vigilant today.  The boy obviously needs to go.  I eat my lunch while following him around, wee bucket always close to hand.  Still no wee, and no poo.

Seeing as there is really nothing happening, I decide to take a break for a little bit and stop following him around.  Then I hear a call from upstairs.... "Viv.....".  My husband sounds annoyed.  I rush upstairs.  Erik has wee'd in a very awkward place.  Over toys and shelves and carpet.  Sigh.  Lovely.  Husband takes him downstairs while I clean up the mess.  I guess I can't let my guard down for a moment.

I am very much over this today.  At this point, I have identified two major problems:  Erik is an absolute control freak.  One; he must be in control all the time, even physically.  And two; relating to this, he will not let go in front of anyone, even me.  In light of these facts, how on earth am I supposed to help him use the toilet?  If I am needed to literally hold him there, there is no way he is going to voluntarily let go while I'm in there with him.  The only time he wee's is when he thinks no one is watching, or when he simply cannot hold on anymore - and his holding power is incredibly strong!

There is no more wee and no more poo for the rest of the day, though I'm still pretty certain he needs to poo.  In the evening, I put his nappy and  pj's on and put him to bed.


Thursday, April 11, 2013

Toilet Training Day 2

Same routine as yesterday, only he is not drinking much today.  I haven't been as diligent in putting him on the toilet.  Maybe 3 times all day.  Not good, but the dread I feel every time I think about putting him on there makes me procrastinate.  Ugh.  Suck it up princess!

We decide to go to the park, with daddy's help.  So I try to put pants on him.  He outright refuses to wear jocks!  He learned on our last toilet training stint that they don't hold anything in if he lets go, and has refused to wear them ever since.  It's absolutely hilarious, the way he vehemently and with great annoyance voices his protest whenever I merely show him a pair!  I resort to hiding them in his pants and putting them both on at the same time.   It works.  But just as we are about to leave the house, he wees.

Poor kid.  The look of confusion and disappointment on his face broke my heart.  Pants on, he thought he was safe!  Wee down his legs, in his pants and socks and shoes.  I change him again quickly, and we go to the park.

When we got home, as I was serving up dinner (shepherds pie that had been in the oven while we were out), he went to a corner of the kitchen while everyone else was otherwise busy, and wee'd again.  But he must have stopped mid stream when he realised there was still no nappy.  Poor baby :(.  I remove his clothes and dry him up, and left him bottomless again.

He is whining and crying.  He is uncomfortable.  I'm pretty sure he really needs to poo.  He won't do it though.  I am really concerned now.  He has held it in for two days at this point.  I really don't want him to get constipated.  However, it is bedtime anyway.  So I shower him, nappy him and put him to bed.  If he is going to do it, this is his opportunity, as un-ideal as the case may be.  I'd rather not have him constipated, so I quietly hope he might poop it out while his nappy is 'appropriately' on for bedtime.

Caught no wee at all today.  He did them both when his pants were on.  Oh well.  Tomorrow it all continues.


Wednesday, April 10, 2013

Toilet Training Again

It is school holidays here - yes, the boy has started school!  Just another post I need to catch up on....  School holidays after first term, and I have decided to try toilet training again.  I feel driven to it more as a duty to my son, to the school, to society, and as a mother.  He is getting older and bigger, and this is becoming more urgent.  And more difficult.  But Baby Miss is now toilet trained herself, and settled into it enough that I don't need to chase her around anymore over accidents.  So really, there should be nothing more holding me back from trying, other than the usual family commitments.  Which are still going to make things difficult I imagine.  I've decided to keep a bit of a journal this time, for how it goes.  This is the fourth time I attempt to toilet train, and I am already approaching it with discouragement and dread.  The first time and second time, I tried with all the recommended techniques, to no avail.  Even our wonderful EI worker couldn't make sense of this boy.  The last time I tried something different, but the OT didn't recommend it, so I stopped and gave up, again.  It's a shame, because we had made some progress and I thought we might actually get somewhere here.  But I trusted her expertise and advice, so I let it go.  Wish I hadn't now.  I am trying this method again this time, so we shall see.

The school is helping - it is one of our major SSG (Student Support Group) goals.  But I still feel compelled to try full swing again at home during holidays.  So, with a deep breath and internally steeling myself against the fear and dread, here goes.....

Day 1.
This morning, after changing his pj's and cleaning him up, I have left him bottomless so I can catch him when he wee's.  I have filled his drink bottle and keep shoving it in his face.  Drink boy!   He is drinking ok, but there has been nothing else happening.  All morning I hovered around him like a fly with an empty ice-cream bucket.  The potty has long been put away, and it is too small for him now anyway.  A deep ice-cream bucket is better for catching his wee.

I have put him on the toilet every hour, to sit for as long as he can handle.  I still have to physically hold him there - not very strongly, thank God - but still.  As soon as I back away, he comes off.  So I stand in front of him with my arms around him, rubbing his back, and his head nestled against my neck as he quietly whines his protest.  He holds himself off the seat a little bit.  He really doesn't like it.  The first time, I keep him there for only 10 seconds.  Each time thereafter I keep him there for 10 seconds longer, until finally, I can keep him there for a minute.

The boy has superhuman control!  Not a wee, poo, or fart all day!  I follow him around with the ice-cream bucket, for no reason at all.

We have watched Tom's Toilet Triumph 3 times already.  He likes to watch it, but wants nothing more to do with the content LOL.

Finally, at about 5pm, he starts to whine and scream periodically.  I know he is busting to go now.  He is so stubbourn though, he just won't let go without his nappy.  It's getting very close and he won't be able to hold on too much longer, so I follow him closely with the bucket, talking to him all the time.

"Wee, Erik?  Wee?"

Whine, whine, scream.  Pushes the bucket away.

Standing on a chair in his sisters' bedroom, he is fiddling with the DS, and whining.  I look away for a second at something else in the room.  Then suddenly - finally at 5:30pm! - he lets go.  Darnit, I missed the start!  I quickly shove the bucket under the stream, much to his disgust.

"Weeeeeeee!  Good boy!  Weeeeeeee!"

He is crying his protest and trying to push the bucket away.  But he can't go anywhere because he is standing on the chair - win!  I manage to catch most of it in the bucket.  The stream goes on and on and on and on.  I think he has pee'd close to a litre!  It's a 2L bucket, and more than 1/3 full, even after I missed the first little bit.  This kid is amazing!  How he managed to hold on this much I will never know!

As the stream continues and I joyfully say "Wee!", he begins to settle his protests.  He allows me to keep holding the bucket there till he is done.  The poor kid must feel so much better now.  As soon as the stream stops, fast as lightening, he's off that chair and running to the living room.  He wants nothing to do with it!

I follow him out, with the swishing bucket in hand, and gently bring him over.  As gently as I can while he struggles against me, that is.  I force him to look on as I slowly tip the wee into the toilet.

"Wee!  Good boy Erik, look, wee!"

He's not impressed.  I warn him about the toilet flush, but let him leave as I flush it away.  He has had enough distress, and I don't want to add to it.

Nothing else for the rest of the day.  In the evening, I showered him, put his night time nappy on, and put him to bed.  He was quite relieved to be wearing it.  And I am relieved that it's over for today.  Hopefully, by catching that first wee, the hardest part is over! Phew!


Thursday, March 14, 2013

The Evil N-Word

I have three normal children, and one autistic child.

 *waits for flying bullets*

I'm not supposed to use that evil N-word am I.   It's offensive to some people I think.  Maybe even politically incorrect...?

Something I have noticed in my journey as a mum to an autistic boy, is that the word 'normal' seems to be quite taboo.  This has truly perplexed me.  'Neurotypical' has become the commonly accepted substitution.  But when you really look at the definitions of both those words, they essentially mean the same thing.  It really has left me scratching my head in wonder, how 'normal' has become such an offensive word in our circles.    It seems to be spat out in disgust whenever it is spoken by some parents of special needs kids, and even some professionals.  Or accompanied by a mocking sneer, or maybe a pious shake of the head .... there is no such thing as 'normal'.  I remember being asked, back at university when I was studying Psychology, during one tutorial exercise, to define it.  The whole class struggled.  Some of us even came to the conclusion that there really was no such thing as 'normal'.

I'd like to assert that yes, there is.  Otherwise the word wouldn't exist.  But 'normal' can mean a number of things - on that point, I fully agree.  It is relative. Neither is it set in concrete, but 'normal' can be quite fluid, changing as seasons and social habits change;  adjusting as new knowledge is found and new attitudes arise.  The Oxford Dictionary definition states that 'normal' is an adjective, meaning 'conforming to a standard; usual, typical, or expected'.   When talking about normal children, that would imply they meet their milestones around the expected time and in the typical or usual way.  It might mean they respond to social and environmental cues as one would expect.  That when we look at them, we see an overall picture of a regular kid.  Oh, there will be differences here and there, but what we see fits into the overall range of the typical.  When I think about my son, I find that in some ways he is normal, but in most ways he is definitely not.  The one thing that normal doesn't mean, however, is uniform.

'Neurotypical', is actually a blending of two words;  Neuro - relating to the nerves or nervous system, of which the brain is a part;  and Typical - having the distinctive qualities of a person or thing.  So interpreting that, neurotypical really just means that the nervous system and brain express the qualities we would usually expect to see in a person.  What is, in other words, normal.

So the question begs to be asked; why is the word 'normal' so taboo?  Are we really so ultra-sensitive as parents that we can't cope with knowing our precious and special bubba is not (..gulp..) normal?  I don't know... I just think that trying to do away with that evil N-word is really just another way to lump every kid into the same category.  And if that is not unfair, I don't know what is.  Our children are what they are.  Some are normal, some are not.  But each one of them is, nonetheless, different.

Just to reiterate what I mentioned above, just in case you missed it:  Normal does not mean uniform.

It doesn't mean, clone copy.  It doesn't mean, exactly the same.  It doesn't mean zero variation.  There is plenty of room for uniqueness and quirkiness in what we expect to see as normal.  Even identical twins have their differences.

So it really bothers me when people poo-poo kids that are normal.  It bothers me in much the same way as when people poo-poo kids with disabilities.  There is this whole mocking attitude that I have come across at various times in various places ... Oh, I prefer different.  I prefer special.  Who wants normal anyway.  Normal is so boring *haughty sneer*.  No it's not.  Normal children are just as unique and precious as the ones who don't align with what is normal.

I have both types.  And each one is precious in their own unique way.

Sometimes I think these attitudes come from parents who are hurting so deeply, that they have trouble really accepting that they have a child who doesn't conform to normal.  An emotionally defensive mechanism perhaps?  Or parents who may have experienced some real and nasty discrimination because of their child.  This type of hurt, I can understand.  I get it.  I really do get it.  When I came to realise that my beautiful and perfect-in-my-eyes son was autistic, I grieved.  My heart was absolutely shattered.  This is my right as a mother, and I defy anyone to challenge me on that right.  It doesn't mean I am selfish, or narrow-sighted, or anything like that.  Don't even try to throw that one at me.  I don't know any parent - not one - who hopes or wishes for their child to be autistic.  Or to have any other special needs for that matter!  Not one!  If you know someone like that, please have them message me, because I'd love to know the psychology behind such a desire.  Going one step further, every parent I have met who does have a child on the spectrum - adored, cherished and treasured - has expressed hesitation and even fear at having more children, just in case they too are on the spectrum!  

No.  What I have seen is that expecting parents at best assume they will have, or at worst just hope, for a child who is healthy and - yes - normal.  Nobody really expects to have a child with a special needs, and, lets be honest, nobody wants to!  It always happens to someone else, doesn't it?  And so if you do get one like that, you grieve.  Deeply and sometimes for the rest of your life.  So I know what that hurt is like.  But I also know that poo-pooing normal kids is not the way to soothe a shattered heart.  I think that trying to deny the existence of a normal standard in children - in humanity - is really a form of discrimination.

In the past I have used that N-word very carefully in my blog. But from now on, I will use it unashamedly.  No intention to offend anyone, but I am not sorry either.

I have three normal children and one autistic child.  Each one is different, and I love them all completely and uniquely.