Apples and Bananas

“My daddy gave me an apple and my mummy gave me an apple, that’s why I’m a girl. I’m your mummy and I gave you an apple, your daddy gave you a banana, that’s why you are a boy. You are very special boys because I accidentally gave you an apple with a worm”.

This is how I attempted to explain Hypohidrotic Ectodermal Dysplasia to my boys on a genetic level. They asked, that was for certain. What was also evident, they wouldn’t wait to ask until they’ve studied biology. It has to be simple for 8, 6 and 4 year olds. What better pictures to use than apples and bananas.

My three boys were born with the genetic condition called hypohidrotic ectodermal dysplasia.

Hypohidrotic = too little sweating

Ectodermal = skin, hair, teeth, nails, digestive system

Dysplasia = abnormal in form

The condition is X-linked, which means, girls carry it but boys have it. Girls have two X’s, hence the apples. Boys on the other hand have an X and a Y so 1 apple and 1 banana. When we make a baby the woman hands over one of her apples, the man decides if we have a boy or a girl by either handing over an apple to make a girl or a banana to make a boy. So you fellas can’t blame the woman for the gender of your child. If you want a footy team, you are the one in charge of selection!

When a woman has a worm in one of her apples (a genetic fault) and doesn’t know about it, she can pass it to her child unawares. You can be a carrier and not know about it, the apple without the worm can mask the one with it.

That is where boys are unfortunate with HED syndrome. Having only one apple means that he has no other to support the wormy one. Try as it may, a banana is no apple.

How does hypohidrotic ectodermal dysplasia affect my boys? How do I put 8 years of knowing no other life into a short story?

It is easier to tell you why my ‘normal’ daughter seems so strange to me.

For starters, she was born with a full head of brown hair! She looked like her father, the three boys looked like the milkman.

One day I picked her up out of the capsule in the car and I couldn’t explain why she was so wet. How did she wee past her nappy? Hang on, the nappy’s dry. How did she manage that?!? She was wet all over, even her hair, how did that happen? I’m sure she didn’t have a bottle in there, it could have leaked. How come she’s so wet? Oh! Eugh! It’s a hot day, she’s sweaty! I’d never held a sweaty baby before.

More than 8 teeth in a child’s mouth is scary! She once ate a whole pear, skin and all, before she could even walk properly! Even now I have to peel, cut and core pears for the boys.

With all those crocodile tears she makes my boys look like they are faking it.

Hairy arms, hairy legs, fuzzy back. Oh she’s going to be so jealous of the boys. No shaving or waxing their legs.

The bucks’ night prank will go terribly wrong, the boys will have no eyebrows for their mates to shave off!

The bride to be will get the shock of her life when the groom enters with a set of eyebrows super-glued to his brow.

I could go on and on, as is any parent’s curse when willing eyes are reading, but I’ll save some more for next time.

My three boys won’t have body odour, their shoes won’t smell, if Matthew bites another child they’ll be treating that child for snakebite. Nathanael is celebrating 8 teeth after waiting 2 years, 1month and 7 days to join the toothy ranks with his first one, and Sebastian is one of the friendliest most talkative little men on earth.

Sure they get too hot when it’s not being monitored and Matthew and Nathanael’s skin gives them no end of trouble with the eczema. But with the right information about their special little bodies, I know that my three boys will live to a grand old age even with that worm in their apple.

with love & support

Tarja Kelly

Why we missed the 2010 ANZAC march

From when Sebastian started in Kindergarten, we would take him along to the ANZAC March and let him march along with his school friends to respect and honour the soldiers who had fought in the war. He’d be so proud, wearing the spick and span school uniform, waving the Australian flag and making it, almost, to the cenotaph at the end of the main street.

The first year he went with Dad and Matthew, I stayed at home with the twins as it was already shaping up for a warm day. He marched with another school parent as Matthew wasn’t at school yet.

The next year, both the boys marched and I took the twins along to see them. We waited and heard the planes fly by, the marching bands play and all the clapping and cheering. We were so proud once again to be able to show our support and stand, honouring the Bravest of the Brave. Again, they pulled out just before the service, so hot, so tired.

2009 was the last year the boys marched. We had packed water sprays, water bottles, extra hats, we had to find a spot close enough to the cenotaph so that we could bundle the boys straight into the air conditioning. Let me tell you, even with the special parking sticker, at a function which caters for all the elderly, these spots are impossible to get unless you stake them out the night before. Even if we got a super spot at the end of the march, how were we going to get them to the start of the march without wearing them out?

We ended up dropping Daddy and the boys off at the start of the march (minding the road closures already in place) and went to find a spot at the end of the march where we would be allowed to park. I then took the twins to the street where we were unfortunate to be in a sunny spot. We couldn’t walk further as I was already carrying both of them, so they stood in my shadow.  The start was delayed ,and as we waited to clap and cheer for the Service Men and Women, we made quite a few acquaintances who were happy to provide us with some shade.

I could feel Nathanael fading as he stood with me and I could only imagine how the boys were faring with Dad, cool breezes just don’t do it for them either. The first of the troops came and we cheered and waved and clapped, we heard the bands and we saw the boys with their flags waving in their school group.

They made it! Tired and hot, flaming red cheeks and shirts which dried faster than the water could be sprayed on, pride of accomplishment mixed with sheer exhaustion. We ended up carrying one after the other for a stretch back to the car, the air-con was on and both Matthew and Nathanael fell asleep on the way home. Many a nosebleed later, we had a quiet dinner and sent our special little heroes to bed.

So this year, we weighed up the options and it was with very heavy heart that we agreed not to take them to the ANZAC march. The weather was already hot and the “sick” days had been kind for a while. I feel like I let the diggers down. I know our children will remember the ANZAC’s as they are taught all we know here at home and at school. Please forgive us for not attending this year. LEST WE FORGET!

With love & support,

Tarja Kelly

Strangers in our own country

Today we travelled approximately 2 hours away from our home. Nothing major, we were going to have the kids measured up for cooling vests and, as one size does not fit all, we decided to go and have it done by the people making them. The trip was great, listening to kids excited in the back as we drove through short tunnels and under huge bridges and alongside an Airport.  We saw massive diggers shifting the dirt at road works and the odd cow and horse in paddocks along the way.

At our destination, we met the wonderful people who were going to make the vests for the boys and the kids had fun, running around the three door exits which were superbly placed in a circle.  We were only there for about 1/2 an hour and they then pointed out the nearest maccas so we could grab a quick snack before returning home.

It was at MacDonald’s where I noticed for the first time in a long time, how people stare. At first I thought it was just due to the fact we had 4 kids who look like two sets of twins. Then, as I looked at faces staring at our kids, I realised it was their appearance. There were plenty other large families there.

These faces were staring at the three skinny white boys with white hair and “scary” pointy teeth. They were staring at Hypohidrotic Ectodermal Dysplasia’s trade mark differences.

Three young girls struck me the most, they were unaccompanied by the looks of it, and they were eating as the kids ran in to the playground.

As my children ran past, I saw how they stopped mid-bite and looked, first at the boys and then at each other, half-eaten burger and chips still hanging from their mouths. They seemed mesmerised. Every time one of the boys ran past they would turn in unison and stare after him, slowly chewing their food as they went. Not a word was spoken between them, as they ate the rest of their food. They then picked up their rubbish, walked out, almost backwards, still looking and were gone.

I don’t know, I didn’t feel angry or anything. I felt a strange detachment as I started to analyse how the girls must have felt, having their “haunt” invaded by four strange children (strange as in not from their area) who actually looked even more strange. I realised that had we been as dark as the night itself, or white as ghosts, they would have stared just as much.

I realised, we have a long road ahead of us, educating and learning to accept differences in all. The ripples on this pond are getting out there, all of you are helping them spread with your knowledge. 

With Love & Support,

Tarja Kelly

A little treat

I stumbled across an old diary from before I had four children. As I was reading it, a page took my interest and I felt it would be nice to share it with you.

Saturday 8th of June 2002

This little baby I am expecting must be a girl, I am very close to being sick a lot of the time and pure will power has kept it at bay. My Boy is growing in leaps and bounds. Now he is pulling himself up on 54cm coffee tables and the fridge where he fishes for any magnet his little fingers can reach.

He builds empty boxes up on top of each other and he has finally learned to put one hand down on the ground before he let’s go with the other one. Usually he would just let go with both hands at once.

We have established a pattern again, 7am or 8am he wakes up and has some milk and fruit mush. About 10 am he goes down for a two-hour nap with a bottle and then again at 3 -4 pm, another nap with bottle. Then, between 6.30 and 8pm he is down for the night.

I am dying to tell mum and dad about the new baby but hubby is absolutely insisting I wait until we are there. How am I meant to hold a normal conversation with them until then without feeling that I am lying? Hubby has worked three nights in a row now and he has two nights to work on Sunday and Monday.

I took my boy to the shops to get milk and bread and a soft drink for hubby and later in the afternoon I took him to the swings for a while and the slippery dip.

We sat on the swing for a long time just cuddling and swinging which makes me wish we had one in the garage just for us.

I love having this memory now. There was a time between the angst and the worry that was just “normal”  once. I hope you all have memories like this in your hearts. They are precious.

With love & support,

Tarja Kelly

First Respite ever

My husband and I had 4 children under four years of age. No great feat by any means, there are more people out there with more kids and closer together than that .

We had been told that respite is good and we should have it because it keeps the spark alive. Hmmm, spark, what is it and did we ever have it?

Between hospital visits and caring for twins as well as the older two boys, we had to give a lot of our “normal” times up. But these were our past, why should we complain? I knew things would change when we had kids, I also realised pretty quickly that things changed dramatically when they were diagnosed with Hypohidrotic Ectodermal Dysplasia (HED). Still, no need to complain, there are children a lot worse off than ours in the world. 

So, back to respite, we decided to try for an 8 hour block. Very long and scary for a first time but we were going to re-visit the old haunt a couple of hours away up the coast. I had horrible guilt and gut feelings when we were leaving. I had prepared the whole house as much as I could, had tags on all the food two of the kids were allergic to. I even had a carer list drawn up with each child’s preferences and sleep times. And the vital piece of information for any “baby-sitter”, a picture of the TV and DVD remotes with arrows to explaining the function of a certain button. Don’t laugh, many a carer since has been grateful for the knowledge of how to change channels after the kids had gone to bed.

Back to the story. We left, me with trepidation, my hubby excited. An hour and a half later we arrived at our destination. Gee things look different when you haven’t been somewhere since you’ve had kids. To me, most shops looked superficial and overdone and the people over accessorized. Or, I was so tired and under accessorized that it was true, I need respite.

Both hubby and I started to feel an urge to go home around about lunch time so, after we sat down to a relatively slow lunch, we decided unanimously, to head back to home turf. Not that we wanted to go home as such but we just wanted to be closer to home than one and a half hours away.

We drove back and passed our house to the closest town and decided to go for a wander through Big-W to kill some time. We had another two hours left of our respite block, we might get laughed at if we came back that early. Just as we decided to maybe spend a couple of dollars on something for the kids, my mobile phone rang.

” Hi, it’s *** your Respite worker…..ummm… Your son has jabbed himself with the epi-pen, what do we do now?” I almost dropped the phone. He had an epi-pen but it was well out of his reach on the bench and I was sure he had used his training pen which he had every where we went.

“Are you sure? It was the green junior pen and not the black and gray training one?”

“Yes, it was the green one and there is blood, he jabbed himself before we knew which one he had”

Well, you may never have seen anyone get through a checkout quicker than us that day. I hung up after instructing them to call the ambulance and explaining it to them, as that was the only instruction I had ever gotten about epi-pen use.

We beat the ambulance home, how , I still don’t  know but I got a call from the driver asking me all about it. I had to tell him that we are on route ourselves and that I don’t know if they have to do a siren run or not but that the Carer had told me he was only mildly distressed.

The afternoon unfolded thus. Number two son had wanted to show the carers his new skill of how to use his epi-pen. Not having noticed there was a difference as yet (he had only acquired the pen a week earlier) he then proceeded to climb up the kitchen bench and grab the epi-pen closest to him. Hopped off and yelled “Look what I can do!”

Jab…! He got himself good. Not only did he grab the back off it to activate it, he jabbed himself so good, he bent the needle on his thigh bone.

The pain of it must have been a shock not to mention the hit of adrenaline straight after. He cried, poor boy. They did their best to console him and waited for us to return. We pulled in and the Ambulance was hot on our heels. They were gorgeous, the paramedics, we were calm and they were too. They took him to get checked out at the hospital with daddy following in the car behind.

The carers were so apologetic, they simply did not know how to explain this to their bosses, or us. We knew our son and we knew how headstrong he was too. They went on their way and soon after Hubby and son returned. The Doctor at the hospital was very impressed, he managed to inject the lot and in the right place. Our boy was high as a kite for almost two days, a humming-bird had trouble keeping up with him. He then crashed and slept for 12 hours straight.

“Now that you know how to use it, will you do it if you have to?”

“No Mummy, it hurts too much. I never want to be hurt again!”

We had our next 4 hour respite block, about two years later. I still don’t feel “right” whenever I go.

This is how we keep the epi-pens safe from little hands now

Time for some Giggles

This blog will be a little different as it will contain several fun things which I have observed with my boys and daughter. Where I don’t know they are only done by HED affected kids or not, I maintain that they are none the less funny.

“What the…?”

We had just brought our twins home after a longer shopping trip and as I picked up my screaming little bundle of girl, I felt she was wet. Very wet actually, I got concerned. Looking at her nappy first I saw it was empty. “How did you wee past your nappy?” I smiled at her, and then I saw her hair was wet too. How did it get up there? Well, when I finally figured out that it was sweat, I nearly dropped her. Sweat on a baby, how odd. I had never had a sweaty baby before and I thought I knew a lot about babies.

“The Ant Hole.”

My husband has a small collection of gadgets and doodads in a corner of the house we call the Oubliette. Naturally, the kids know they are not allowed to touch without asking, so when Number 4 son ever so sweetly asked for a go of daddy’s little drill, he got a yes. When the older boys have the little drill, they pretend to be fast draw McCaw or some fiend like this, not little 4 though. He didn’t do any of that, in fact we never heard the drill whine to life the whole time he had it.

He returned it with a smile and daddy put it away. End of story….I think not. About two weeks later, I found a neat little hole, about 6 inches off the ground. It was perfect and round and I thought there had been a running with pencil incident. When the troops were lined up and asked who done it, I got the same as always “I don’t know” and “wasn’t me” My two other children who only live with us when there is strife 😉

Wasn’t till all the fuss died down that my littlest man came to me and said “I’s done it mummy, i’s making a house for the ants to live in”…

“The strange kid”

Number one son came home from school and said to us “Mum, this was so weird, a boy touched me today, then he took my hat off my head and wet it and put it back on my head and walked away. How did he know I was hot?”  Love it when the message is picked up by children at school 🙂 

“Mysterious Vandal”

We have a very colourful house, I like colour and the walls reflect that. We have warm yellow walls, purple skirting and architraves and where we have the half wall, the top of it is fire engine red. When I came in one day to a silent room, I looked around to see what trouble they had gotten into this time. I know from past experience that silent children are trouble… There were textas lying on the floor, no lids and no paper. There was a spotless child sitting with the textas smiling.  I thought it was odd that he was smiling that he took all the lids off the textas so I helped him put them back on and distracted him with another game.

It wasn’t till I had a closer look at where he was sitting that I discovered the yellow texta all over the yellow wall, the purple texta streaking along the skirting and a bit of red texta to top it all off on the red top. My sister coined the phrase Autistic Vandalism from this story.

can't see a mark, can you 🙂

So this is it, short but sweet, I do have many more but I am saving them up for later.

With love & support,

Tarja Kelly

Once Bitten…

You would all be familiar with the saying “Once bitten, twice shy”. Well let me tell you all about one time we were “bitten”.

We had two lovely little boys and we had found out that they both had a syndrome called Hypohidrotic Ectodermal Dysplasia (HED). We were still learning and discovering things unique to both of them and amongst these times, we also spent many days in hospitals.

If it wasn’t a fever it was croup, or asthma or eczema. We were there for days on end and more often than not, they would pick up Rota virus as well so another week of drips. The nurses all became very good friends and every time we would leave it would be with a “Lets hope we never see each other again”. All in good humour though, we liked the bunch there.

At one stage our visits seemed to coincide with a sighting of a nurse from that ward, outside the hospital. We’d be shopping and see one of the nurses, just a glance and a wave across an aisle and that night or the next day, we’d be in again for one or another reason.

We must have been the only family after a while, where a nurse, off duty, would check with the shopping center first to see if we were there or not for fear of jinxing us into hospital again.

Soon I was pregnant again, a pleasant little whoops which turned into a double whoops by the first ultrasound. Oh my, Twins….

We had more stints in hospital but the one I’m going to tell you about was the one which happened out of the blue.

My little man had a fever. He was quite the little trooper, fighting it off with a dose of Panadol and playing in between. I was 25 weeks pregnant and we had a few issues happening with little man number two, so the quiet, older one was being a blessing by not complaining and “needing” me. We had just spent a weekend away at a camp with other ED kids from all over Australia and had the excitement of flying there and home again. Little man was all tuckered out, being so close to his most favorite form of transport in the whole wide world, and besides, he was always a bit strange after a longer stint away from home.

As the fever dragged on and by the third day would only be supressed with panadol and nurofen, we were getting a bit suspicious about what could be happening to him. He had no pains, he wasn’t complaining of anything, he just got very hot, lie down and wait for the panadol to work. Then he would be up and playing like “normal”.

I had an ultrasound appointment because they wanted to check if bit and bot were ok after the flight so I arranged a respite worker to come and watch the boys. I gave her all the details and told her about the concerns I had with the fever and that we were going to the doctors after my appointment. I don’t know if fate intervened then or if I was more worried than I wanted to be but the last thing I told her was “If you are at all worried, I give you permission to lock up the house and take him to hospital.”

I must admit, I was a little apprehensive leaving them that day but I also knew that they will be looked after. I did need to see my babies were happy inside their cocoon too.

My appointment was almost 20 minutes long and when I went out to pay, the receptionist let me know that the hospital called while I was in. They assured me everything was ok but that the carer is there with my boys and I should go there first. I was there in record time but still with the assumption that it was the fever which spooked her.

Because she wasn’t the mother, the hospital emergency department didn’t do more than check his temp and vitals before I got there. She was so wonderful, she took my other boy home to wait for my husband to get back from work before clocking off. He had been called too and got permission to go home early for compassionate leave.

I was there and things went into motion. The doctor called for a chest x-ray and he was wheeled in for his umpteenth one. As we waited for the film, the nurses and odd doctor would pump me for information about HED and we provided everything we knew at that stage. We were well on the way to educating as many as we could to spare other parent’s of the agony of not knowing until the teeth erupt.

The x-ray came back and suddenly we were in a flurry of action. The doctor had him on an oxygen mask and put a drip in, the nurse was on the phone to the major hospital a town away to arrange a transfer and the doctor was briefing the ambulance crew.

In amongst all this, sat my little man with fever starry eyes, smiling that he would get a siren ride in the ambulance. Before that, he had only ever had a silent run. Little hero.

When we finally got to the accident & emergency department at the “big” hospital, it was standing room only. My boy was parked in a hallway and I was standing next to him, trying to keep my belly from blocking the rest of it. Our Ambulance driver was not impressed at all yet there was not much he could do. As nurses recognised us they smiled but had to get on with their other assignments so nobody really stopped untill, with a glint in his eye, the Driver pulled out the x-ray and nonchalantly stuck it on the illuminated wall.

You know what happens when you turn on a light in the middle of the night? Moths come from everywhere, immediately. Well, this is what the x-ray did with doctors. Suddenly from every corner came a doctor or an intern to stare at the picture before them.

“WHO owns this?” One of them finally asked and both of us pointed at my boy. Well, he was placed in a room, examined and listened to and next thing we knew, he was rolled to the ward.

It was like coming home in many ways, we knew everyone on duty that night and some of the nurses dropped in after their shift to catch up on the latest.

We were there for a week. Anitibiotics and oxygen to fix his Pneumonia. It was only later that I found out he had fluid on his lungs and had there been even 5 millimeters more shadow on the ultrasound, he would have been taken by helicopter to Brisbane hospital to have his lungs drained.

We had an angel watching over us that time.

With love & support,

Tarja Kelly

Eczema/Autism continued

Now, although eczema itself is painful and irritating, and the High functioning Autism makes my child slightly different from the “normal” child, I still find both of these things easier to cope with than some simple everyday occurences.

We are a “different” family, that is for sure. We don’t really delight in parties and going places, partially because it is hard work, partially because we have to explain so many things to everyone else. Three boys with varying degrees of comfort levels in hot weather, two of the boys with eczema which flares up when they are too hot or eat something which irritates it and the one son whom you just can’t prepare.

There comes a time though when even the toughest facades can break. Those times are usually when the school is rife with birthday invitations. Both my sons don’t get any invitations.

Because my second son’s first two terms at school were so traumatic for him and his peers, nobody got to know “him”. He was just the weird kid who wears glasses and screams like a baby when his mum leaves him at school. He smells funny and when he doesn’t like something, he starts to scratch himself until he bleeds. Oh, and don’t forget, he also isn’t allowed to eat the cupcakes you bring in for your birthday.

The sad thing for me was when we attempted to “make” friends for him. On someones (rather heavy-handed) suggestion, we grudgingly decided to hold a birthday party for him. “It will be good for him and it will be great for you as you’ll meet mothers from his class” My heart was in my mouth…I knew that he wasn’t the most popular kid in class, I also knew that the “mothers click” was well established 2 years into a child’s schooling.

I felt bad things to come. My beautiful boy however was ecstatic. He even brought out his slumbering talent for writing (he still has trouble reading as a result of the late diagnosis) to write invitations for his friends. I felt so bad when I made him whittle his list of 35 down by half. He just couldn’t understand that parties cost money and where we were going, each child cost $11. Cheap but still, by 35…sorry.

We did all the right things, we made sure he brought the invites to school and he was so excited you couldn’t wipe the smile off his face if you tried. I booked the venue and explained that there may be 15 kids but are they flexible?  We had an R.S.V.P and my phone number was clearly there. All to do now, wait.

And we waited. Until the last day, when two rang up and said, yes we will come. My boy was beside himself with worry. Imagine a sheep dog who lost a sheep in the heard and was trying to round-up the rest of them in desperation. Well, that was he. “Can we call them mum?” I wished I could, but I had no surnames or phone numbers to even try.

Well, today was the day. I had been assured that after we show how friendly and “open” we are, others will reciprocate.

We were open and friendly to the 4 children which showed up for the party. I was friendly and open to the two mothers who dropped them off. They were also very friendly as they said to each other “let’s go for that coffee while the kids have fun. Thank you so much for inviting them. We’ll be back in about 2 hours?”

He had a ball, he knew many didn’t come but he didn’t know why and won’t ever know why. I won’t tell him, he wouldn’t understand it anyway. I felt hollow. I had been promised the world would open up for me and the children, yet there I stood, having to pay for 10 children, wishing the world would swallow me instead.

I am not angry at the people who don’t understand us, I also don’t resent the ones who never replied, that they are not coming. The people I do resent, are the ones who don’t take the time to really “know” a family before browbeating them into situations which are so far removed from their own comfort zone as to make them physically ill at the though of it. The people who will not listen to a mother’s knowledge of the “system” already in place. The people who know better than you because they got paid to know more.

Many times I am slightly grateful for the visual disability of the eczema because if it wasn’t for that cue, many would not treat my Autistic son differently and that would make him very ill. Mind you, I write that sentence in trepidation that it will be looked upon unfavourably by someone “in the system”. “Oh, we got her now” they may celebrate, “We have it on the world-wide web, this woman likes her kids sick”  Well, as God is my witness, I would have all their pain on my shoulders in a heartbeat if it meant they could go out and play with the other kids without fear of teasing and ridicule. Sad as it is though, “mental” issues are not visual and people suffer needlessly because “seeing is believing”

With love & support

Tarja Kelly

Eczema/Autism, the untold story

Eczema, yes, we hear about it a lot. It has happened to someone who knows someone whenever I speak about it. Most of the time this is how I hear about it : “My cousin had it, but nowhere near as bad as yours”

Now, that is not one of the most pleasant things to hear, when you spend your days struggling to come to terms with this demon called eczema. Most days the only thought that gets you through is “Someone out there is worse off than him” . Imagine that thought smashed with a sledgehammer…

The eczema which plagues two of my sons has not officially been linked to Ectodermal Dysplasia but stories from friends, also affected by both, tend to point to a “yes”.

Our fight with eczema has been hard. Not only did I have a child itchy beyond description, trying to tear his skin off. I had a child who, because of  Autism, had no way of understanding what his body was doing to him. The four years he was undiagnosed were absolute hell for us.

It started so innocently one morning. I placed all his breakfast on the kitchen bench as usual and he was playing in the livingroom. He was 2 years old. As I talked to him and told him I was making his weet-bix he looked up and started screaming. He could not be settled at all untill my Husband said to him, “show me!” So, the precious little man, picked himself up from the floor, walked backwards from the lounge to he kitchen, put everything I took out for his breakfast back into the proper place and walked backwards, back to the livingroom. “Oh” we thought, but that wasn’t the end.

Little man then got up again, walked forwards to the kitchen, laid everything out in the colours he wanted and the place he wanted and went back to sit and play. Only then did he look up and smile, giving me the go ahead to continue.

We put a system in place at home where we gave him a visual choice of two things before we continued with our routine. That worked well, except for the eczema. Whenever he was inflamed, he could not cope with any other input than what the stimulus was with the itch. It was so overpowering that he had absolutely no room for any other interaction with anyone. If someone then wanted to talk to him or even touch him, the self-destruction would begin.

You must understand, at this stage he was not diagnosed as Autistic. We were looked at as “weak” parents, anxious and overbearing, as “wanting” to have something else wrong with our child, encouraging his destructive behaviour by giving in to it…All sorts of barbaric things. We went through two years of hell at preschool where I would leave a screaming child in the morning to pick up a screaming bloodied child in the afternoon. “Oh, he had a good day but he didn’t want to do this/that and we said no so he went weird” Is how it would be explained. We were given so much bad advice that he would be hospitalised by the outcome more often than not.

Hospital was heaven for him, routine and nurses at his beck and call. This only made others look at him as a spoilt kid who knew how to “play” the system. “They are smarter than you know” “He is playing you like a fiddle” ever more hurtful words to pile on a mother’s back who thought she was not worth the air she breathed. I couldn’t help my child, I was a failure. I was even condemned for letting him keep his dummy (pacifier), the ONLY thing which stopped his “attacks”.

He was eventually diagnosed “Oppositional Defiant” by a well-meaning psychiatrist, she may as well have signed his death warrant. Just in time for him to start school it was the most awful time it could have happened.

His first three terms of Kindergarten, his days started thus;

“I don’t want to go to school!” I would ignore this to the best of my ability and keep with the routine. I had been told, he is oppositional so I have to ignore all of his pleas or I’d be seen as weak.

“I don’t want to go to school…..” crying now, sobbing and starting to itch. 

By the time he’d be dropped off at school, he would be so fired up he’d be scratching bloody furrows into his already tortured skin. This would continue up to an hour at school after I’d drop him off. The Principal (who deserves a medal) would watch him in his office as he destroyed his own skin and kept him from harming himself more.

He would “escape” from school to try to go home…we were a whisker away from having him home schooled.

Then, salvation came in the form of an Autism outreach worker. My pleas for another diagnosis had finally been heard and she came to assess him for a whole day.  Eight hours, she sat and observed him at school, she correlated information his teachers gave her, the principal was interviewed for his observations and my Husband and I were also questioned for 2 hours.

I remember my husbands words like he just said them today “I am scared to go back. I don’t want to be told again that it is all our fault” my heart broke as I heard those words. I was feeling the same apprehension but we had not been able to communicate that to each other. Little man took up so much time.

Together we walked back to the principal’s office, hand in hand. We sat and chatted to the principal as we waited for the others to come back. The two ladies from Aspect, the Autism center for NSW, came back in, smiled as they sat down and the assessor said, “Mr and Mrs Kelly, your son is Autistic.”

to be continued…

With love & support,

Tarja Kelly