Autism & other disabilities. My story & DS story.

WARNING STRONG LANGUAGE and VERY VERY LONG!

Autism is not new to me, neither are other disabilities.

I knew about autistic children when i was in primary school, we used to go visit the autistic school to perform for them (i played third violin in our tiny ensemble/orchestra) and our guide unit went to another local special school on a weekend so that we could immerse ourselves in disabilities (by being strapped into a wheelchair and having to learn to get ourselves around the school, or having to look into a convex mirror to be able to see what we were writing or drawing, try doing dot to dot in a convex mirror, you will never complain again about your own short sightedness or long sightedness) all in preparation for the once a year camp where severely disabled guides and scouts camped with able bodied guides and scouts for several days.

Now don't get me wrong, i am no angel, infact i truly hated the girl that we got lumped with at camp - literally lumped with as the guide leaders didn't like me or the two girls i was with, so they made their very best effort to get us the hardest to care for girl, the one who had full mental function but not very good physical functions, although i swear she wet the bed on purpose twice when we refused in the middle of the night to cuddle and rock her to sleep, (she was 115kg and we were 50 and 60 kg, there is no way we could "rock" her) we were 14 at the time and so was she!. I later found out (via one of the older girls who had had problems with her the year before) that this was just her, she was sexually active by the time she was 9 and liked other girls (and i had no idea what sex even was at that age) so it wasn't just me having problems with her.

This particular girl however is not the norm for any disability, although I have since met other children with heightened sexual interests, including one dear little boy who frightened the life out of his foster mother when he started producing semen at age 5 and took to rubbing himself on bins, doors and people, this same little boy however used to try and bleed himself by shoving his fingers, pencils, anything that would fit, into his nostrils to try and let the blood out as he insisted that the blood was killing him, poisoning him. This poor sweet child (who was also so violent he had to be rehomed after being with his foster mother for 6 years, because he kept trying to harm her elderly mother and her infant son, it broke her heart to do it but what else could she do) was not able to be classified as any one disability, he was on ritalin for his adhd behaviours, he was on high strength sleeping tablets to stop him self harming during the night (he smashed a window and tried slicing himself with pieces of it, he ended up with a mattress on the ground as he would climb up on any furniture and dive headfirst at the ground, but by law they were not allowed to restrain him, even for his own safety).

My own cousin was disabled physically after contracting polio as a baby. She wore those awful leather boots and metal stirrups for many years and made damn sure that everyone felt sorry for her (very spoilt only child from well to do parents) or they paid dearly if they didn't bend to her every demand (us cousins from the poor parents got her handme downs and she made sure she announced this at every party we were made to attend).

So none of this was new to me, but when DS was born and I knew he wasn't right somehow, I didn't know how to get any help. I was 20, unmarried and had a partner who hadn't touched me or spoken nicely to me since the night i told him i was pregnant and refused his offer to pay for an abortion. I had very few friends at that point, so suffered in silence through a pregnancy that was physically difficult and mentally and emotionally exhausting, not only from lack of support but also constant abuse from my partners family (his fathers exact words to him and me, when told i was pregnant - lol obvious by then anyway as i was at least 7 months : My prick got me into trouble with you, and now yours has done the same to you. You and the gold digging bitch wont get a cent from me.)

DS had many things that weren't normal, some i asked about, some i didn't. I will list them in order as i remember rather than timeline order.

His Birth, he was 43 weeks to the day when they decided to induce me, this after i had waters leak sporadically for weeks (my doona still has the stains) and break fully two days (19 days overdue) before hand. But when i asked the nurse could it be my waters breaking she told me i was silly little girl who had probably wet myself and to go back to bed - i was in the hospital with high blood pressure and heat exhaustion. I spent the entire night and the next day in a bed soaked with sticky amniotic fluid and when i complained that the fetal monitoring belt was making more gush out they ignored my request for a clean sheet or assistance to get to the shower (too dizzy to stand without assistance by then).

By the morning of 21 days overdue the ob/gynae decided to induce and put me on a drip at 8am(syntocinon, wouldn't wish it on my worst enemy) and told me to go for a walk with the drip on wheels to get it started (he didn't tell me how bad it was going to be when it did), so i waddled from the fourth floor to the seventh floor (with my partner who grumbled about lack of pay from not working) to go visit his father who was admitted there after having an infarct an hour before i had been admitted with high blood pressure (both happened during my partners birthday dinner, so i was feeling sorry for him). I barely made it back down to the birthing sweet before my legs could no longer hold me up the contractions and pain was that strong. By midday i was had it, i couldn't sit, couldn't stand, needed to pee but sitting on the toilet was too painful, the pethidine had no effect on me at all and there was no anaesthetist available to put in an epidural until 5pm, by then my best friend and my partner had to stand either side of me and let me hang from their shoulders as i could not stand, sit or lie down.

After the epi was done, the ob came back for the tenth time that day to check on me and stated that he was going to break the waters to get it moving as it had been too long. He went to break them to find there was NONE left. See the nurses that night hadn't recorded that i thought my waters had broken, so the ob didn't know it had happened. So DS had spent two entire days with his head pressed into my cervix with no fluid to shock absorb.

My cervix finally dilated at 9.20pm (went from 2cm to 10 cms in ten minutes) and DS was born at 9.54, coming out facing backwards (he was backwards the entire pregnancy which is why my stomach is so bad now), with the cord not only looped around his neck, but tied in a "true knot". The survival rate i was told later, is 95% of true knot babies are still born, 4% have brain damage and 1% are ok. DS was considered to be in that 1% and the Ob told me he had never seen a live true knot baby in all 40 years of practice. He cut the cord before DS shoulders were delivered as the knot would have tightened and cut off the blood supply before they could get him out.

He was purple, still and not breathing when they handed him to me and i remember wondering why they wanted me to cuddle a dead baby. They then seemed to notice that he wasn't breathing, yanked him away, did resuss procedures, took him to the neonatal ward for an hour (left me alone on the damn bed with two drips in and unable to move from the chest down and busting to pee but couldn't bring myself to pee on the bed). When he came back he was as pale as a ghost, and looked like he had been beaten up.
He had a haematoma on his head that was bigger than my hand, from where he had been forced by gravity onto my cervix without the amniotic buffer. This caused him to be quite badly jaundiced and took 8 weeks to go down. The pic below is DS at 10 days old, his first night at home and you can see the huge lump that makes his head look twice as big at the back above his ear and just how dark his skin is with the biliruben levels.


My tailbone (already fractured from one of the falls i had during the pregnancy) cracked fully during the birth (fucking painful) and even with the epi so overdosed i couldn't feel myself breathe, i still felt the most incredible pain while delivering DS (and was told i couldn't possibly). Years later (after DD was born) i had to have a hysterectomy (age 23) and was told that they had had to repair my stomach muscles which had been split down the centre vertically and one side had actually twisted (DS and his kicking) and my pelvic floor which had torn away from one end (i told them it hurt when he was delivered and i even heard them snap).

So all in all, DS and I were both rather traumatised by the birth. Even worse, because i had elected to be transferred to the private hospital after the birth (no birthing suite at the private hospital) they put DS and Me in a car at 1am to transfer us.

DS was still dopey as all hell. I was told later by a lovely midwife at the private hospital (who showed me how to breastfeed DS at 2am (no noone at teh other hospital thought to check if i was able to feed him) that the pethidine was the cause of the dopiness and possibly the fact he needed resuscitation.

And people wondered why we spent ten days in hospital and why i wouldn't let anyone hold him or touch him and why i developed PND (which went undiagnosed for the first 12 mths of DS life).

I remember when he was 2 days old, and asking for him to be assessed by a paediatrician because one of his eyes kept rolling backwards into his head. Seeing as his father had fairly strong family history (every male in that family for several generations had to have eye surgery) of having one weak/lazy eye and longsightedness, I was sure DS was the same but was told he was fine. Tell me you can't see that he is crosseyed in this pic, he was 2 days old.He didn't crawl until 14 1/2 mths, and started walking at 15mths. He then walked around bumping his head into things so much that i bought him crash helmets and those padded head protectors to wear. Everyone thought i was insane (and i had lost my confidence in myself by then, so had no idea whether i was right or wrong). When he was two I was getting my eyes reviewed (i am short sighted but don't need glasses unless reading off a board or driving at night and needing to read street signs) I casually asked the optometrist what age they could test kids. The optometrist had a look at him, used a machine that can do auto reads (they use it all the time now before doing manual testing as it can pick up inconsistencies where people try to fake it so to avoid glasses etc) and announced that DS was infact WORSE than his father and NEEDED GLASSES ASAP! He infact was seeing several (five or six) points of vision out of each eye due to flat spots on his cornea, so his brain literally was swimming with images, NO FUCKING WONDER HE RAN INTO EVERYTHING!

Yet this same little boy had mystical language skills, he said his first word (parroted me) at four months old (i had it on video too, but dickhead ex took all my video footage). He said "BONES" after i asked him did his milk have bones in it (he choked). at 18mths when his father finally married me, we went on our honeymoon (laughable term really) and took DS with us. We went to every mountainbike (his fathers passion at the time) shop on the gold coast and in brisbane and while driving through tweed heads DS cried out and pointed "BIKE SHOP". Now we couldn't see a bike shop anywhere, no bikes no pictures, so we did a loop and came back around. We finally found it, ontop of a two story building was a sign SAYING "BIKE SHOP" in plain blue writing, no pictures or graphics, just those two words and no actual shop insight (every second shop was vacant at that stage). Apparently DS had learnt to recognise and read those words during that week when we visited all those shops. Noone would believe us though as we couldn't get him to repeat the performance.

Oh and language, well you know some kids when they see a truck they say fuck. DS did this, top of lungs everywhere we went. WHY, well see Daddy drove a truck, a large tilt tray to be exact, so DS knew all about trucks. Walking down a street with him was sheer torture some days, because at the top of his lungs he would point to all the trucks and list them off without pausing, just like this "DADDY FUCK MUMMY FUCK BIG FUCK PRETTY FUCK BLUE FUCK" and mummy is hurrying down the street with head bent, avoiding all the astonished looks from other people and trying to remember where she left her car so she could escape home and hide again. This was at about 10 mths old.

At 12mths, when the PND was diagnosed and the doctor recommended DS go to daycare at least one day a week so i could have time out, the daycarer's were amazed that ds could talk in 5 or 6 word coherent, context appropriate sentences and actually hold a conversation. Now this may have been my fault, because being home alone with DS for 12 months and very limited adult interaction, I spent most of my day talking to DS as if he was an adult. I also found that the only time i could put him down during the day, without him screaming til he spewed again (reflux baby) was to put him in his portacot right infront of the tv with the lion king or Oliver's tail on video and the sound up loud. Then he would lie there fascinated and watch it, leaving mummy free to go to the toilet with two hands rather than one holding the baby and the other to do what needed to be done (became very adept at one handed stuff during that first four months). I spent hours singing with him, reading him books and poetry, talking with him, playing games with him. I remember the early childhood nurse remarking that my bond with him at 6 mths was a lot stronger than any other mother child bond she had seen and that she had witnessed how well he reacted to my talking to him, yet sounds around us and colours and objects he didn't appear to notice at all, even when he ran into them.

Most of our early days were spent like this. DS would go to bed at 10pm, he would sleep soundly until 8am every morning, would not wake to feed, even when i tried to wake him (i had dreadful mastitis because of this) and then from 8am until 10pm, we would have 15min cycles. 5 minutes of screaming, 5 mins of feeding, projectile spew up to 6 metres away in whatever direction he was facing (i wore old towels most of the day) and 5 mins of him sleeping (unless i put him down).

So i learnt really quickly several things.
1. DS urine burnt his skin, so every single wee meant a nappy change, even for a tiny drop. 4 dozen cloth nappies lasted me until 3pm on the first day he was at home. his father arrived at 4pm to find me frantically trying to calm DS down while he screamed and screamed and liquid ran down his legs. He went to the shops and bought another 4 dozen nappies. He also reacts to zinc, it made the nappy rash turn into red raw blistered skin.

2. Giardia is actually catchable in australia, even though the paediatrician we saw in the childrens ward when DS was 10 weeks old, had 41 degree fever, constant diarrhea, dehydration and had gone from 9 pound 4 ounces at birth to 8 pounds at 10 weeks, told me that Giardia couldn't be caught in australia as we are a civilised country. I knew what it was though because my father had it too (*and he gave it to DS unknowingly after arriving back from indonesia). I must admit to laughing my head off manically several weeks later when the 6pm news announced that Giardia had been found present in the Sydney water supply. SEE DR SMILEY, GIARDIA IS NOT JUST A 3rd WORLD PROBLEM!

3. Reflux is not easy to deal with. The medications make the spew more slimey, which inturn makes it very hard to hold onto the wriggling, back arching, kicking, screaming baby that is now covered in slimey spew. It also is difficult to stop the baby from drowning when he spews while lieing on his back and it goes up in a fountain and straight back down onto his face. It does not suddenly dissapear, it is just that the projectile vomiting stops and it becomes sneaky reflux and burns babies oesophagus and lungs and causes chronic asthma and recurrent pneumonia's.

4.
Babies who continually smash their heads against the carseat, floor, midair, mums face and anything else they can touch, are NOT NORMAL!
Toddlers who do this whenever distressed, told no, put into their cot or their highchair are NOT NORMAL!
Toddlers who roll both eyes back into their head while telling you that "M is DEAD! I am bob the builder and M cant hear you!" ARE NOT NORMAL!
Babies who refuse to eat and actually starve themselves are NOT NORMAL!

However i have learnt that telling anyone about these episodes and trying to get help is more likely to get me examined for Munchausens By Proxy, than to get my child any help. This happened when he was 12 mths old and i insisted he was having strange choking fits at 2am each night and finally out of sympathy (i had been at the a&e every night for six weeks trying to get help) the nurse admitted us to the kids ward (unbeknownst to me labelled as mother suspected Munchausens By Proxy). However, in doing tests on DS to prove to me that nothing was wrong, they instead found he was infected with WHOOPING COUGH, which explained the middle of the night coughing/choking episodes. Its just that during the day his asthma meds were controlling the cough enough that he didn't ever WHOOP!

I have also learnt that hospital counsellors can not always be trusted. One of them rang centrelink without my verbal or written permission and accessed all my details (by telling them she was from the hospital) and changed my payments whilst i was staying in the children's ward with DS. This resulted in my getting home to several letters from centrelink to inform me of my changes and me putting a complaint into the hospital and the counsellor losing her job. This also resulted in me getting first an overpayment, then a debt, then an underpayment and then a repayment for the underpayment, causing me much more stress than i was already under.

Behaviour has always been an issue for DS. To this day behaviour is a big issue and because we still don't have an "official" diagnosis, people who SHOULD know better, still treat us as if DS is purposely obnoxious and badly behaved and regard me as an innatentive mother who doesn't discipline her rogue child. HELLO I AM STRICT AS HELL!! I CANT DISCIPLINE HIM ANY HARDER WITHOUT RESORTING TO ABUSE! I do however have little tolerance these days for people who SHOULD know DS by now, so if they build themselves a mountain by treating him as if he is purposely being obnoxious and then demand from me a way that they can get off their mountain without DS WINNING, then they can go to hell, because their is NO WAY DS WON'T WIN! If you ban him from joining in, HE WILL LOVE IT BECAUSE HE DOESNT HAVE TO EXPEND ENERGY! If you yell at him, HE WILL SIT THERE AND STARE AT YOU BLANKLY! If you try to guilt trip him, like saying "well the others miss out because of you!" HE WILL IGNORE THIS BECAUSE HE DOESNT UNDERSTAND OR FEEL GUILT IN THE WAY YOU DO!

People assume because he is High Functioning and High Intelligence that he is naughty on purpose. Now sometimes they are right, he is naughty on purpose sometimes. BUT he also has massive fears and these cause him to act out. They are not all rational, like the fear that i will leave him behind. I have never done this, but if i got out of his sight, he would scream like a banshee and try adn find me, even if it meant he ran infront of a moving car to where he thought i went. Even if i was only a metre away from him but out of his sight this happened until he was 8 years old. Part of this was because of his father, his father treats him like a toy, plays for a bit then hands him back, even when he lived with us (til DS turned 6 years old). But he was oncall 24 hours a day, 7 days a week most times (tow truck) as well as working a normal 40 hour week at work (panelshop & towtruck). SO he would arrive home at any hour, then could be here all night or be gone again in ten minutes, DS would hear the truck coming home and be all bubbly and chirpy and run at Daddy as soon as he came in the door (DADDYS biggest complaint was that he just wanted to come home to peace and quiet and why did the kids have to attack him first thing - my response :gee well maybe its cause they havent see you in three days!) and then scream and cry and cling to daddy whenever the phone rang, which meant Daddy walking out the door again. Daddy would simply remove theclinging growth from his leg, climb over the gate (DS was not a climber so we just walked over gates that kept him safe) and go back to work with DS on the verandah screaming DADDY DONT LEAVE ME!! This fear has subsided since we were seperated and then divorced, it took 2 years but i can now go next door without DS panicking and screaming or running out into traffic to look for me. He is now secure because he knows when and where i am going and while i am now mean and wont tell him where, just "we are going in the car, hurry up and get in" I think it is working, he is learning that he doesnt HAVE TO KNOW EXACTLY WHERE WE ARE GOING TOO to be safe and content, he KNOWS I WONT LEAVE HIM BEHIND or if I am going without him, THAT I WILL RETURN and that he is safe with whoever I leave him with.

Other physical issues, well the reflux damaged his lungs, but at age 4 he had his first endoscopy, colonoscopy and biopsy in preparation for a possible Nissen Fundoplication. THANKFULLY we were advised to try more food elimination first, and by 4 yrs 6 months, we KNEW that all the reflux, annorexia, pneumonias, diarhhea, bowel impactions, constant immune problems, anaemia etc were caused by FOOD INTOLERANCE! So by taking out everythign excepting rice, chicken and water, we went from a 4 yr old weighing 10kg who refused to eat unless forced (including needign a nasogastric tube and stomach pump) to 6 weeks later having a relatively healthy looking child that put on 8 kilograms, YES EIGHT KILOGRAMS IN SIX WEEKS! and he was no longer choking, arching his back, having stomach acid go up his throat and down into his airways.

We spent 9 months in total, doing the full elimination diet to find that he is severely wheat, gluten, rye, oats, barley, malt and any starch or glucose made from these intolerant. He is also mildly intolerant to MSG (naturally occurs when you concentrate tomato into paste or sauce) and SOY products. THIS FINDING SAVED HIS LIFE!

You see he was starving to death no matter how much or what we shoved down his throat. I say We but in reality it was just me and him most of the time and DD once she was born. When we removed it all and he went clean, his body was able to regenerate the Villi and Micro Villi and start actually taking in nutrients, which is how he managed to put weight on so quickly whilst eating only chicken, rice and water.

He has had to go through this process a second time due to stupidity on his fathers behalf, because when we seperated, he told DS that the food strictness was just mummy being mean and there was no such thing as food intolerance, so i then had an emotionally disturbed (parents seperated, kids and I had to move out as DH would not relinquish the house for six months, DH father telling kids really awful things, like when he told my 3 yr old DD that MUMMY IS A GOLD DIGGING SLUT!) SO poor DS had to go back on full eat anything diet and 9 mths later he was again, pale, anorexic, impacted with severe diarhea, refluxing, begging to go clean and not allowed until he could have another endoscopy and biopsy (because even the gp and paediatrician told DS food intolerance was real and he didnt listen to them, so we went the whole 9 yards to prove it to him).

So after going clean again, the first ten days is like a heroin addict going cold turkey. It is simply horrendous watching your child shake, sweat, vomit, cry, rage and pass out while going through detox and there is NOTHING you can do to make it better other than sit it out, cuddle them and do things like cool washers for the sweat, bicarb and water to help the impaction pass (which speeds up the detox a little). DS now KNEW what he could and couldnt eat, he KNEW WITHOUT A DOUBT that Mummy was not just being mean and HE CHOSE to be GLUTEN AND WHEAT FREE! He had to learn to read labels himself as his father first refused to do so an kept insisting on feeding him bad foods, DS also learnt to read and check what his baby sister was eating after she had a mild anaphylactic reaction to egg yolk and constantly had diarhea, vomiting, bad flatulence etc to dairy and her father fed her M&M's for breakfast each time he had them.

He also is missign half of his sternum, this is a physical abnormality that also was not picked up at birth or during the first two years even though we went to the gp and paediatrician almost weekly for years and he was hospitalised at least sixteen times in those two years. It was during one hospitalization that the paediatrician asked me "how long has your son had that skeletal abnormality?" and I looked at him and asked "what abnormality, you have been seeing him since he was born, what do you mean?". It was not long after this that we changed Paediatricians and found the good one who recognised the reflux, organised endoscopies and tests and recommended food testing.

Anyway missing this bone means his heart is not protected and his rib cage is weakened as the lower half of his rib cage connects to NOTHING at the front, directly over his heart. He also has a heart murmur, that we have to be wary of as he gets older. He can NOT play any form of contact sport, even school yard soccer is too dangerous. He does Physical Culture, Little Athletics (scary this year as he will be learning the "flop" in high jump) and SWIMS, although swimming is an issue.

Swimming is an issue as DS has TACTILE ISSUES. He does not like water touching him (although is getting better, he no longer has a total meltdown if he has to go out in the rain), which in one way is useful because while smacking has no effect and the naughty corner is a joke (punishment for teh mother who gets to hold the screaming biting punching kicking scratching child to keep him in the corner), a ten second burst of cold shower water near his head is enough that it only has to be threatened as a consequence and he behaves. However, it also means that swimming has to be relearnt every year at the start of summer, he loses all memory that he got right up to level 6 and squad swimming and goes back to clinging to the edge and screaming and meltdown if you try and help him leave the edge. EVERY YEAR! but within a few times, especially if friends are swimming around him, he will let go and start swimming slowly and last season he even dived into a pool. THIS IS A HUGE ACHIEVEMENT FOR HIM!.

Other tactile issues involve his head, especially his "sensitive sore spot" which unbeknownst to him is where the Haematoma was at birth. This spot can not be brushed or touched or rubbed (NIT COMBING IS HORRIFIC). He does not like his teeth being brushed so hasnt had them brushed more then ten times since he turned 5 yrs old (i got sick of losing tips of my fingers and having dints in my nails where he bit me while biting the heads off the toothbrushes). He can not sleep if there is a sheet, a pillowcase or a doonacover involved, so all his bedding is naked. He can not sleep if there is a mosquito (neither can i so i dont blame him for this at all) as the buzzing is too loud. He has spent years being terrified of the dark (blackouts are also horrific events as he fears the power and lights will never come back on again), so insists on sleeping with a light on, until earlier this year when we finally managed to get him to sleep without a light directly in his room, having light seep from the next room along instead. Daytimes he has issues with glare and brightness and gets headaches, so we have gotten him transition lenses that get darker when they are in bright light and go clear in dim light.

Oh and i could go on and on and on, he is such a complicated child, and i love him dearly and i feel guilty because he often gets 8/10ths of my attention while DD gets 1/10th adn DBF (nearly been 4 yrs now) gets 1/10th.

He is turning 10 years old in January 2008. I will be celebrating this milestone with glee, because it has been the HARDEST ten years of my life (and i did not have an easy childhood either) but DS and I will have survived the ten year mark!

This is not all of our story, there is much much more and its not even begun really. We now are fighting to get recognition so that DS can go back to school, get help such as an aide or things like chew items or fiddle items to help him with his concentration, extra tutilage for his learning disability (reads tolkein but cant spell most four letter words or write them very well).

but with all of this, this whole long rant, it came about from reading another page on an autistic child and all the things they have tried and programs they have been in and books they recommend and I realise i have tried, tested and done a lot of these things too, without knowing why or being told too, i just did them and i think this is why we are having so much trouble getting him diagnosed, because noone really saw all the bad stuff or documented it, and they have no comparison from then to now. I wouldnt change what i did, I am happy having a high functioning child, i just wish the system didnt require your child to be extremely low functioning and/or low iq to be eligible for any help or support.

Ok well that is enough for one post lol, will write more later. This is very cathartic to get this all out. If you have read all of this then you are amazingly patient (and probably have a headache by now, sorry).

HUGS!