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.



xx

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.



xx

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.



xx

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.



xx

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!


xx

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.

xx

Dubbedah

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

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

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

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

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

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

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

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




xx