Wednesday, March 31, 2010

Dishes Suck: The Experiment

This isn't exactly autism sucksish, but I need a venue to share that isn't connected to "The Others." (I'll explain the term later.)

I'm conducting an experiment.

Currently, there are three adults living in my house: me, my husband, and my sister-in-law. We are all working multiple jobs right now and are stretched to the max. We're crabby, tired, and our patience is running thin.

I had a meltdown last week. I teach on Thursday night and when I came home, there were dishes galore. To add insult to injury, my SIL left for a weekend work trip and her skanky lunch dishes were waiting in the sink for somebody (aka ME) to clean up.

On Friday afternoon, I calmly told my husband that I felt I was being taken advantage because we're all stretched, yet I'm the one doing the majority of the work with the kids and cleaning the house, doing the laundry, etc. Then I told him he and his sister needed to work out a schedule where they took responsibility for emptying and loading the dishwasher so that there would be one consistent task that would be off my to-do list. He agreed.

Secretly (here's where the experiment comes in), I have decided that I will not unload the dishwasher until after Mother's Day. I will only load my dishes, the kids dishes, and any dishes I use to prepare food. If the dishwasher is clean and unemptied, I'll hand wash our dishes (mine and the kids). I'm finding that handwashing right away is actually taking less time than the loading/unloading dishwasher route.

I realize that doing this secretly is a bit unfair, but in my defense, I asked for them to help out and they agreed. This is just my way of measuring results. It also gives me something to do in place of constantly asking them(and/or bitching at them)to hold up their end. I do enough reminding with the kids.

So far, there is a full dishwasher that's been washed twice because yesterday my SIL put a bunch of dirty dishes in, then decided after I told her they were clean that she'd just rewash because hey, that's the least lazy option.

Now there sits about 1/3 sinkful of dirty dishes, a dishwasher that has been clean for a day and a half, and dirty dishes from my husband and SIL, who from here on out will be referred to as The Others.

I'll keep you all posted on the experiment. Wish me luck.

Monday, March 29, 2010

A bit of a vent...

OK, Asperger's does suck in my practical mind, but when I'm in my happy place----I love him and he is amazing and funny.  Unfortunately the world requires that I perform in a practical and functioning way.  At this point in our conversation, you may not be sure if I am the aspie in addition to having a child with it...  How do I answer that question? I don't know.  I haven't been tested.  But deep down in there, I really honestly could have Asperger's Syndrome.  That idea freaks me out, so I don't go there very often. It makes me somewhat sick to think about it.

Which brings me to my son.  He is 13.  That 3-word sentence gives you lots of information: obsessed, moody, depressed, temper, overwhelmed, lonely, sad, manic.  Other offerings I can give are: singing all Beatles all the time, creating new and 'exciting' Star Wars stories and reciting them to everyone he sees, on medications for abrupt and intense mood changes (are you shocked?) and pretty severe death wishes.

Both of my kids were brought up in public school until last spring 2009.  My daughter (8) has some unidentified educational quirks that we are trying to figure out.  My son was getting beaten and the school policy was not helping.  The environment in middle school 'sucks' for almost everyone, but for aspies, it's torture.

Obviously since I am homeschooling, I'm not overly concerned about conforming to societal norms.  I don't NEED him to perform everything that I would expect of another son.  I never did.  I was concerned with his happiness, and my own sanity in providing that.  My aunt's philosophy with her aspie son is different.  She has pretty much pushed him through the door of various sports teams, and held the door shut while he struggled to get out.  He eventually performs, but I've rarely seen him smile.  My oldest brother-in-law (aspie) was raised somewhere in between, but he is now 48 years old, so it was a different environment altogether.

I do have hopes for him for the future.  These expectations are small and specific and vary day to day.  For instance, I hope he will grasp the principles of writing various forms of papers this coming school year, so he can go to college.  I hope he is able to keep the few friends he has.  I'd like him to successfully attend New Tech High when the time comes.  None of my plans for him go beyond a few years time.  How can they?

We're a pretty religious family, and I know Heavenly Father loves him.  I have seen evidence of that in gifts, in  little miracles.

But I am tired.  I am worried.  I struggle to be a good parent to both of my kids, but I especially feel that I could easily fail.  Asperger's sucks because we don't live in my happy place.  Because I am not perfect and perfectly consistent and perfectly sane all of the time.  I know what you're saying---"you're doin' fine, don't expect perfection, it'll be okay."  Whatever.  Hopefully, someone is thinking, I understand her feelings.  I need that probably most of all.    

Life in an Autistic World - II

Screeching ten-year-old power walking up dusty dirt driveway.

“I am leaving. I am never coming back. I don’t trust you anymore. You are a cruel Mummy.” Tears track down dusty damp cherubic cheeks. Silver trails in the grime. I am a failure as a Mummy. Boot me off the P & C committee, I am not worthy. Do you really want to know my transgression? I’m not cooking the baked potatoes quickly enough. What sort of a woman would do that to her starving child? He hasn’t eaten since morning tea an hour ago at least! His world is broken, yet again.

Hysteria reigns in our household. Overreaction is the norm. Having a child with hypersensitive sensory perception who is prone to extremely strong excessive emotional outbursts is challenging. To say the least.

Back to screaming child. I am tempted to let him go just to see how far he’d get. We have a five hundred metre driveway so he has a fair distance to ponder his decision. When he was younger he would get right to the bit before he was out of vision. He’d walk in place, too scared to be out of sight of Mummy. At this older stage he seems quite capable of following through. So I go to him.

“Do you think you might be overreacting a little?”

“Yeeeeeeeees,” quavering voice nearly breaks between sobs, “but you say sorry Mummy. I’ll say sorry too.”

I’m stubborn. My will wars with common sense. Pick your battles woman, if you have learnt anything on this rollercoaster it’s to pick your battles. But I DIDN’T do anything wrong. The child in me can rear its ugly head at the most inopportune moments.

“Sorry baby, let’s go back to the house.” Trust restored he allows himself to be led back to sanctuary. Life in an autistic world.

Life In An Autistic World is a series of short articles on how Boy 1's world collides with mine. A slightly humorous look at quirky everday life in the world of a family affected by ASD.
Madmother can also be found randomly ranting at Meaninless Meandering from a Madmother.

Life in an Autistic World - I

Curled up in the foetal position is my five-year-old son. He is softly crying.

“I want to be dead.” He means it. It is devastating when your baby falls into the black hole of depression. The paediatrician had warned us when he was only three-years-old to watch for the signs. Three? Shouldn’t a child be consumed by dreams of The Wiggles or even the dreaded Teletubbies? Not death and darkness.

I wander nearer to the prone figure on the floor. Sniff. Sniff again.

“Ooh, he’s starting to smell. Urrggh better put him in the compost before he stinks the house out. Oh no, the worms are coming, the worms are coming to eat his guts out”.

It is at this point his stricken face starts to change. Mouth quivers and corners begin to flicker upwards. Tears diminish. I look to his four-year-old brother. We are a tag team united in dissipating the black cloud engulfing the shape on the ground.

“Can you take the legs? He’s too big for me to carry him all by myself.”

“Mummy, do I have to touch him if he’s stinky?” Mischievous long lashed eyes peer at body at his feet. He knows this routine and joins in gleefully. Born performer or moulded by life?

“I’m not stinky! You’re stinky!” Crisis over. Giggles erupt as brothers war over who won the smelly championship.

I often ponder what happens when these special kids have mothers without humour. My warped sense of absurdity has been my most effective weapon in this battle against anxiety and despair. I thank God and my parents for encouraging my twisted quick wit. Another battle won. His angelic smile beams back at me, shadows forgotten. For the moment. Life in an Autistic world.

Life In An Autistic World is a series of short articles on how Boy 1's world collides with mine. A slightly humorous look at quirky everday life in the world of a family affected by ASD.
Madmother can also be found randomly ranting at Meaninless Meandering from a Madmother.

Thursday, March 25, 2010

Please....scream louder

Well little Zachary has had a rough few weeks but the other day was a real woozie. I seriously thought his screaming and meltdowns couldn’t get any worse. It did. On our way home from school Friday I pulled out of the kiss n’ ride and he started crying about his seat belt not feeling right. Joshua who knows all to well when things “don’t feel right” tried fixing his belt. The screaming and crying got louder as he complained it was twisted. It wasn’t. But to a child on the spectrum it doesn’t matter if we don’t see it twisted. He feels it and can’t cope. Just before we got to our house Joshua adjusted it again. I park the car in the driveway and all hell breaks loose as he starts screaming for me to turn around and go back we have to start all over. He kicks the seat infront of his and gets hysterical when I tell him we can’t go back.

I will let you in on a secret. When Joshua was about the same age if I did not take the exact route home every day the same thing would occur and he would beg through his screaming and tears to please go back and start again because it wasn’t right. This was before I knew anything was wrong and felt as though I somehow did something to distress my own child that yes, I would actually turn around and start all over just so I wouldn’t have to deal with a two hour meltdown. Thankfully gas was cheaper then!

After about fifteen minutes of Zachary still in the car hitting me, screaming and refusing to let me take his seat belt off I finally got him into the house where he screamed, ripped up a picture he had done in school, and then ran out of the house screaming for me to take him back and start again. I brought him back in only to have a meltdown of swearing, throwing things, hitting me, scratching, jumping up and down and begging me to please take him back. Finally he was exusted after about an hour of this and started banging his head on the chair as he rocked back and forth with his blankie. My 6 year old daughter Arielle and 7 year old son Sebastian were happy he finally had stopped and came downstairs out of hiding.

It can be difficult some days - okay most days - but as my little Ryley continued to sleep through it all, and my other 4 sat around Zachary (not too close of course) to listen as I read Zaks library book “Franklin and the dark” I realized that I couldn’t have asked for 6 better children.

Reblog this post [with Zemanta]

Wednesday, March 24, 2010

The Road Less Travelled 1 - The Tale of a Boy & his Journey into Autismness

Part 1:
When our first child was born, we were the same as most new parents: filled with love, hope, joy and dreams for our son. Little did we know that God had planned a very different journey for us. Far from the smooth highway we veered onto the rugged back roads and broken dusty trails. The first of the section is fact. The second part, in blue italics, contains the less rational emotional journey.

The Early Years Birth to Three Years of Age:
  • High Blood Pressure last trimester - medically controlled by Labetalol. My mother-in-law suffers a cerebral haemorrhage when I am thirty weeks pregnant. We travel interstate to see her and land smack bang into family politics, making life nasty and hellish. On our return, my previously perfect blood pressure has skyrocketed through the roof. Rushed off to BP specialist and medicated. Weekly visits. Informed it is MY BP, not pre-eclampsia.
  • Admitted seven days overdue, blood pressure dangerously high again. Controlled, induced ten days over. Twenty-four hour labour, attempted forceps, foetal distress, meconium passed not inhaled, emergency caesarean section. Blue baby. Apgar four at birth, nine at five minutes. I cope, after all that is what women do. I have run the gauntlet and survived, and so I cope. And thank God for a brilliant obstetrician without whom we both would not have survived.
  • Slightly jaundiced baby. All well within 24 hours. He is cute, but I am waiting for this overwhelming rush of maternal love. It finally kicks in around Day 3, about the same time as my milk. And the tears. Then I get mastitis. Twice. Gotta love this gig.
  • Early childhood nurse picks up torticollus and craniosynostosis (or cranial stenosis as it was back then). Turns out he was wedged like a cork in my pelvis the last trimester which resulted in weakened muscles on one side of his neck, tightened on the other. Craniosynostosis/Craniostenosis is when premature synostosis of cranial bone sutures occurs, normal head growth is inhibited. Various characteristic anomalies of the head develop as a result, and in extreme cases, the development of the brain and sensory organs is hindered. Google is not my friend. My baby may have to have the sutures in his skull cut open. His forehead is pushed forward on the left and his skull is flattened at the rear. His brain is being crowded. He screams in terror when they lock his head into position to take an x-ray. I cry.
  • By twelve months old, (when I am two months pregnant) we are given the all clear. Physiotherapy, posturing, tummy time and sleeping position regulating has strengthened his neck muscles, allowed the pressure to be relieved on the flattened plate of his skull, and the bones to realign. It is pure luck that the plates have not fused. We rejoice that our gorgeous boy does not need surgery on his delicate skull. I did not know how I was going to handle it if they had said "surgery". All the tears when we made him lie on the side he was not comfortable in, all the battles when he tried to roll to the other flat side were worth it. He is going to be okay.
  • He starts saying words quite young. The ECN does not believe he is saying "Mama" at four months, she says he is babbling "Mumumumumumu". Until he does it in front of her. Until he deliberately and clearly calls Mama when I leave the room. Looks for me. Waits. Then yells quite annoyed: "MAMA!" She also denies the night terrors in a child under 12 months old. So we video them. Again she admits her mistake. By twelve months, he has over thirteen words including a favourite: cheesestick. Sentences are being formed. He is a joy, and apparently quite forward in his speech according to the ECN. But he is lagging in the physical development side, but we are told not to worry.We can only stop the terrors by latching him onto the breast. I feed to thirteen months when I am nearly through my first trimester and sick as a dog.
  • He is a very Mum focused child. Clingy, but a happy, laughing boy with it. Sleeps through except for night terrors sometimes. Captivates many with his engaging smile. Loves blowing raspberries to strange women over Dad's shoulder. He has the best laugh and an infectious giggle. Hubbie could have had lots of phone numbers with this one as his wingman. So engaging, he loves people. Had the whole plane playing peek-a -boo on one of our flights north. I think he is used to being with me, which is why he cries on the rare times he is not.
  • Commando crawls from 5 months, crawls on knees 11 months, finally walks 17 months. Finally! Thought I would be carrying two babies around. ECN says the lateness is nothing to worry about.
  • Loves being a big brother. Constantly monitoring adventurous Boy 2. He loves his baby. Sits and chats whilst I feed Boy 2. Never a hint of jealousy, none of the anger or tantrums we were told to expect. Is very protective of his little brother.
  • Sensitive little man, is upset if people yell or argue. Does not like loud noises but is not exposed to them often.
  • At almost three he begins to change. Coincidentally it occurs with his MMR injection. He becomes extremely attached to me screaming whilst I shower. His speech changes to an  indistinct, slurred, monotone. Obsessions come out and eye contact is avoided. Meltdowns run for up to two hours. My child vanishes and a new one is revealed. The doctor later says it is at this age that these signs emerge. I am lost in a fog of grief. After a long battle my Dad has lost his fight with cancer. I am not mothering my children, I am merely managing. The baby sitter mentions autism. I tell her to mind her own business, silly little know it all. My son is nothing like Rainman.  

This is the beginning of our journey, in my heart I knew something was wrong but could not face it. As my grief grew more manageable, I started look at the issues. My first concern was his speech problems, and the unexplained changes. It was to be my starting point.

  also blogs at Meaninless Meandering From a Madmother. This entry is the first in a series telling of our journey.

Life With Autism - A Mother's Perspective

I never dreamt I would grow up to be the sort of woman who cries at the drop of a hat. I always despised women who ride a huge rambling rollercoaster of emotion. Keep it to yourself - exercise a little self-control for God’s sake. Now I have joined this emotional little clique. I read an article this morning, sitting on the toilet of course – where else would I have the time alone to read, and I cried yet again. What was this inspirational topic? Another Hollywood celebrity discussing life with an autistic child. Autism is not selective. People from all walks of life are affected by it. An elite club you do not really know much about until YOU are invited to join. Even now, when a new member is revealed, I cry tears of empathy, grief and relief. I will have another congenial companion on the journey, they will understand. At the same time, my heart breaks for the path I know they will have to tread, the challenges and compromises they will have to consider on a daily basis.

It is quite ironic emotions erupt from me when the catalyst is a disorder associated with the lack of emotions. I now know that this impression of autism is incorrect. People on the autism spectrum still have the same gamut of feelings but react and reveal them in a different way to the average person. Every child on the spectrum is an individual so the disparities are endless.

How would I describe my son? He is eccentric, unique, pure, complicated and has Asperger Syndrome. He is emotionally challenging, heart warming, and eminently loveable. My prayers are that he is happy and content in his life. I dream he will marry, have kids, follow his dreams, fulfil his potential. He is angelic of face, volcanic of nature but only those who witness him in full meltdown see those masked eruptive depths. Generally, people use the despised phrase: “he doesn’t look autistic, does he?” How, exactly, are they meant to look?

For a parent, those four words: “your child has autism” is paramount to someone telling you: “sorry, you have a terminal disease.” The phrase has a terrifying fatal ring that you did not see coming. Pow, take that. It is ironic that Time magazine nominates autism as the only condition equivalent to cancer in its genetic complexity. Initial reaction: it is a joke, right? Not your child, he talks and is loving! Don’t autistic kids sit in a corner barely emoting let alone being verbal? Must be a mistake, they have to be wrong!

Your whole view on life changes, not in a split second, but gradually, little by little, as the implications of this diagnosis kick in. When a child is born, it enters into a world of parent ambitions and dreams. When that child is diagnosed with a disability, it is the parents who grieve for their lost hopes and aspirations. It hits you in stages. Disbelief, grief, acceptance, survival.  Like a reformed alcoholic following the Alcoholics Anonymous guidelines, we follow our own AA path: autism awareness.

Enter the minefield of lovely, helpful professionals. Sadly, a high number will bombard you with worse case scenarios accompanied by literature to terrify, or else offer no assistance whatsoever. Expect you to mine through the fields and find the hidden cachet of therapies and support. A secret society who will not tell unless the parent unlocks the concealed code. It is only once progressing through the system you learn to become ruthless and track down the rare professional who understands, still retains some compassion in with the professional detachment. Don’t get me wrong, we have encountered some wonderful specialists along the way, but why have we needed to fight to find them? We are exhausted by dealing with our children and their issues, and then are expected to have time and energy to intensely research or discover the many alternatives?

As parents, a pervasive, encompassing loneliness engulfs you. Like two shipwreck survivors, you cling to each other, reassure each other, and sometimes loathe each other. Too down beaten even to try to communicate with external connections, friends fall like flies. The child becomes the centre of your focus – the marriage just has to coast along under its own steam. Time is in such short supply to even shower seems an unnecessary waste. The internet and its wealth of knowledge becomes a constant lure. Conversation revolves around droplets of information to be shared. No wonder so many frailer marriages implode under the pressure of a special child. Thank God, ours has not. Thank God, we both follow the same path. Thank God, we still love each other enough.

In the dead of a long, dark night I once wrote:

“What can I say to people to let it out? They say how average, normal he seems but they don’t live it. The fights, struggles, mood swings – his and mine. And the questioning of how much damage I am doing to his brother. How wrong am I getting it? The doubts, anger and frustration of living day to day. The struggle to do normal things like taking a family break. He told me today “I will kill you” and he probably will, somehow, sometime; the heart attack or stroke from the stress, the gun when he is older and angrier… the alcohol I use to feel better... or not to feel at all. So now I sit, unable to sleep; and type and cry.”

This is still my reality though not all the time. My son makes me proud in so many of his actions, methods and beliefs. These special moment keep me going, hold me on the path we have chosen. So many different therapies thrown at you, to pick a direction and stick to it is fraught with uncertainty and doubt. What if it is the wrong choice? What if I am damaging his fragile psyche and another choice would have smoothed his life for him? The consequences could be tragic if we get it wrong. Think Columbine or Arizona Tech. The frustration and isolation that erupt into violence, a newsflash revealing a frozen glimpse of a parent’s greatest fear. My greatest fear. How did their mothers feel? The pain and questioning. What did they do wrong? The unbearable guilt and shame mingling with the overwhelming loss and grief.

I second guess and doubt my choices already. It is easy to feel that a decent mother would be able to fix things for him. No matter how many times I am told otherwise, I often wonder if I did something to cause this. It is so much harder because I swim against conventional thought. MY child. Don’t they get it? MY child. Nobody on this earth understands him the way I do. Not even his father who acknowledges the truly unique, special link I have with my firstborn. His little brother probably understands him well, but still not that iron, heat forged, binding chain we share. Yet I am probably the toughest with him. I have never subscribed to the school of “poor me, poor him”. I have never allowed the boundaries to differ in relation to both my children. My oldest has to live in the real world, thus he has to learn to cope with the real world. Some mothers think I am harsh. Some mothers think I am obsessive. Some just think I am delusional.

Many education professionals cringe when they see me coming, or if my name is mentioned. One very senior special needs educator said: “you are an overzealous mother who is causing her child undue anxiety and stress by your attitude. He cannot learn and you will scar him with your belief otherwise”. Most present believed he was right. I wonder if that man considered how he was scarring me with that comment. Years later his words still taunt me in the sleepless 2am worry sessions. But time has shown how incorrect they were. If only I had the energy to track them all down to flaunt his school report cards.

The tragedy is we are meant to rely upon these “special” educators, these experts. Those on the front line, the teachers and aides themselves, have allied with us. Former principals pushed boundaries for us. For this, I am so endlessly grateful. They put their hearts into helping my child, but are often bound by the ridiculous ideas and limits placed by the so-called specialists. I despise some of these authority figures. What was it Mark Twain said? “In the first place God made idiots. This was for practice. Then He made school boards.”

I try not to compare my children. I leave that to the school system. In the household where I grew up, we were treated as individuals. Comparisons were frowned upon, the phrase “why aren’t you more like your sister”  never uttered. I have always told both my children from birth they are unique, special, different. It is heartbreaking to see the way society likes to knock us all into the same monotonous shape. Especially the school system – submit or leave. Comparison is the name of the game. No wonder home schooling is the greatest growing teaching mechanism in the developed nations. I hope both my children survive the educational world with some eccentricities intact. Conform to cope, not to become the round peg. Have the confidence and self-belief to embrace their differences, but still be accepted within mainstream society.

Writing is an ordeal for my son due to his fine motor problems. In this day and age, you would think the system would get it. He will never be comfortable with penmanship, it tires him beyond belief. Most autistic children have low muscle tone, which affects both fine and gross motor skills and it is made more difficult because of the pressure he places upon himself to be flawless. Did I mention that these kids are perfectionists? He prefers to refuse to attempt a task so overwhelming is his fear of failure. This is why I have framed the first Mother’s Day letter he wrote me at six years of age. My close friends cry when they read it on my wall. They know exactly how hard it had been for him to write this, equivalent to another child writing it in blood. The last line in it is “You are very special because you always save me from falling.” When questioned about this line, his reply was “you always save me Mummy, from falling sad, from falling mad, from falling over.” My son. Who believes Mummy will fix anything. I have to live with the knowledge that I will not always be able to save him from falling. I will not always be there when he falls. And so I have to give him the tools to be able to pick himself up, dust himself off, and keep moving. Physically and emotionally. Is it any wonder the pressure pulls me down at times? In my life there is a constant undertow of emotion, ready to drag me under at my first sign of tiring. But if I go down, he goes down, so I swim on.

My child has the typical autistic sensory issues: smell, touch, taste, sound, sight. Like a superhero, these are fine-tuned to hypersensitivity. Makes for fun on any day, is excruciating on bad days. You know he cannot help it, but it is the whinging that wears you. Oh God, the whinging. If you think all kids whinge, then multiply it by 100 and you have life with an autistic child. These children are the eternal pessimists of life. I think Murphy was autistic (you know – the one who wrote “what can go wrong will go wrong”).

It is probably why I joyously revel in my child’s cheekiness. To hear my son use sarcasm or throw a witty comeback makes me glow with pride. ASD children do not have usually this ability. Everything in their world is factual and literal. When his teacher says “good day, no hiccups,” he looks at her in bewilderment. “I didn’t have hiccups today or yesterday or at all last week.” Why would his teacher mention hiccups? He really does not get it. So when I hear him say, “you punch like a girl” or twist a word for a wholly different meaning I know we are slowly winning the battle. The anthem I can hear in the background right now is music to my ears. “My brother’s a pinhead, my brother’s a pinhead.” The chant of a champion. We struggle to teach him the things other kids just seem to know as they get older. I do not want him to lose who he is, just make the journey easier throughout life. And to do this he needs skills that others take for granted. If only I could transfer some of his younger brother’s excess to the older.

What do autistic children born to demure mothers do? What happens to the children diagnosed with autism whose mothers do not know how to fight? The reserved ones. Do the mothers learn to fight? Do the children become self-sufficient? Or are these the children who fall between the cracks? The system fails them, then Mum does. Future massacre perpetrators. Terrifying. Heartbreaking. Tragic.

I am by nature a doer, but battle has now become a way of life. I fight my son every day. "Eat breakfast. Please eat breakfast. Son, you will run out of time, eat breakfast. JUST SIT THERE AND EAT BREAKFAST! Get dressed. Please, get dressed. Just get dressed. SON GET DRESSED RIGHT NOW OR I AM TAKING YOU TO SCHOOL NAKED! No Mummy is not trying to cause you stress by yelling. Son brush your …" Well, you get the idea. Sadly, the biggest campaigns have been waged against those who are meant to be our greatest support. The medical and educational specialists. The burnt out ones, I call them. They look at you as if you are an illiterate idiot, or an obsessive parent in denial. Don’t you understand? Your child has autism, it is not curable!

I know the diagnosis. Disbelief and grief were dealt with and conquered. We had to or the family will remain in an endless limbo. Acceptance and survival are far more complicated, and the impossible is discerning what his reality and potential may be. Exactly who gave these so-called masters a crystal ball? I want one! They are so positive of the outcome for MY child, so definite in their projections. There are so few who understand our plan, who bolster and cheer us on. Give us the positive reinforcement we so crave. Why can’t more of these professionals realise how much we need to hear those few words: “You have made the right choice.” It is not that hard to say!

I do NOT accept the restrictions and the doubt imposed on my child’s abilities. I know what he is capable of. I am aware that many things will not develop with maturity and age if we do not intervene now. Therefore we do. We give him the grounding he needs to become a happy, fulfilled adult. Teach him to use his own judgement to overcome the obstacles. To make the best choices, not the worst. He has already far surpassed what these people predicted for him in the early years.

The internet becomes addictive when you have a child diagnosed with autism. I grasp onto little bits and pieces, ideals and ideas, beliefs and gut instinct. Weave them into our lives. Our path. Our way. Our desire to help him be whoever and whatever he chooses. OUR WAY. The World Wide Web can be your greatest resource or the most insidious tool in the universe. Who was it who said, “A little knowledge is a dangerous thing”? So true. The search for information and ideas can backfire when you stumble onto the horror stories from armchair experts who prophesize doom and gloom for the child.

I have a signature underneath my username. “Please don’t annoy me, I’m running out of places to hide the bodies…” The original was actually a bit stronger than this, but I adapted it to be a little more politically correct. Just to warn some people I meet on the internet highway that I am a lioness protecting her cub, the warrior queen using my wit to take down any enemies.
It is terribly amusing that I am writing all this. Baring my soul, ripping off the scab from my heart. I try not to ramble on too much about him. People’s eyes glaze when I am spilling too much. Therefore, I do not. It just seethes in the pit of my stomach until I get through it, or until I purge it all on the internet to my close coven of friends facing the same battles. Yes, we do actually call ourselves a coven or sometimes a clique. A clique where nobody ever has to fight for membership. A group of emotionally turmoiled mothers grasping hands, baring souls, trying to bandaid the wound. I sit, and again I cry. This time with gratitude that these special women get it. I can stop fighting and breathe. Just for a moment.

otherwise known as Tanya is an Aussie blogaholic. She has four blogs of her own, but can be mainly found randomly rambling at Meaninless Meandering from a Madmother. A mother of two boys, her oldest son, now 12, has Asperger Syndrome. She really has a yearning to write, and one day she hopes it may be more than just Madmother mouthing off.

Monday, March 22, 2010

Mommy meltdown

Today I cried. I had finally had it. Having children on the spectrum really sucks, and I have gone on for so long with just “dealing with it” every day that it finally happened. Mummy meltdown. Not to have a poor pity me session but seriously it was bound to happen. How long did I think I could actually go on here with 6 children, no help, and two on the spectrum?

Granted there are other children who have far worse disabilities, but here in this household it is bad enough. The worse thing about having a child on the spectrum is that the do not look like they have a disability. They look so typical. But back to the mummy meltdown. It was probably brewing over March break as each child came down with a nasty stomach bug, one after the other. So when it was back to school today I was glad to be back into the regular routine.

However, my Joshua had a rough time getting back into the school thing and didn’t want to go. I finally managed to get him into the truck and over to the school, but once there he put up a terrible fight and wouldn’t get out. I had to call out the VP who fortunately for me is a great guy and totally gets Joshua. So after about 15 minutes of Joshua screaming, kicking, hitting and trying to run off, the VP managed to get him under control and into the school and so I left.

Then I cried. Hard. The flow of tears felt like it would never end. For half an hour I allowed myself to scream “why me?” I allowed myself to yell at all those ignorant people who claim Autism can be cured by diet, or other things that only give us parents false hope. I allowed myself to feel the guilt and shame that comes along when my son chases the garbage man in his truck down the street screaming for him to give back his stuff, or when he has violent outbursts, or when he has a meltdown in the grocery store. I allowed myself to feel guilty about not being able to spend more quality time with my 4 typical children because Zak and Josh require me 24 / 7. I allowed myself to be me, not the supermom people think that I am.

Then I stopped. Wiped away the tears. I am a wife, a bitch and the biggest advocate for all of my children. I am a momof6 who only has time to feel sorry for herself for about half an hour, once a month or so. Times up.

Reblog this post [with Zemanta]

Sunday, March 21, 2010


When I had my first child, thirty years ago, I was still a child myself. In fact, I think I still was when I had my third child eight years later. I made mistakes along the way but I always loved being a mother. It was the most fulfilling and rewarding thing I had ever done with my life. When my children grew up and moved away, I felt empty. I felt as if I no longer had purpose in my life. So, seventeen months ago at the age of 46 and with an ailing husband and a few health issues of my own, my husband and I became foster parents to an eight-month-old boy. Because the father is a relative of mine, I knew the history and knew that our foster child would become our child. What we didn't know was that he would be diagnosed with Autism.

Despite his diagnosis, we love Matty and we adopted him on November 20, 2009. At that point, he had lived with us for 13 months. We really didn't think that raising him was going to change much in our lives. Because of my husband's illness, we had already stopped doing many of things we previously enjoyed. We actually thought that having a baby would be a fun new life for us. (We both had children from prior marriages but none together.) We even thought that having a laughing happy baby would help my husband to feel better. Give him a new and bright focus so he wouldn't dwell on his iron lung. And you know, for a while it really worked. But, Autism changes everything.

When you think you know all there is to know about Autism, you have a lot to learn. Anyone who says that he/she knows all about Autism is a liar. Autism is a mystery. It is an unpredictable series of who-knows-what. Every day is so the same yet so very very different. What the Autistic child loves one day can throw him into a total meltdown the next day. Things we take for granted; eating, washing, sleeping, become an issue.

Mealtime. Once upon a time, this was the most pleasant part of the day. Now, it's a thing we fear. If the food doesn't look right or feel right, (yes, I said feel right because he must touch and squeeze and lick every item on his plate.) he won't eat it. The few things he will eat wreak havoc in his over sensitive belly. He won't eat cereal but rocks are great. He won't eat rice but lint is wonderful! This leads to the next issue SLEEP. I remember it, I miss it, and I long for it! I think at this point I may even kill for it if I had the strength and wasn't in so much pain. But, when Matty doesn't sleep, no one sleeps.

Our days begin at 6:30 AM. We strive to keep life as structured as possible for Matty because any change is apt to drive him into himself and cause the day to run on into the wee wee hours while he tries to sort it out. For example, Last week, we had a visitor just before dinner. It was a family member that Matty has only seen a few times and she only stayed about an hour. Matty withdrew during the visit then became very cranky at bedtime. It took two full hours of walking and rocking his 35 pounds to sleep that night. That was a minor thing. Christmas week was one looooong day for us. But that’s another story. A structured day for us consists of keeping meals, snacks, naps, and playtimes at the same time every day. Except for the one hour of therapy Matty gets each week, we are alone. From early morning to after dinner it is two old people chasing this child around trying to keep him safe from himself. He is obsessed with anything dangerous; stairways, outlets, climbing onto windowsills, tables, bookcases, and lately the shelves of the entertainment center too. A simple “NO!” does not divert him. He ignores all verbal commands and seems to know that we can’t get up fast enough to stop him on his path of self-destruction.

Afternoons on good weather days, I take him outdoors where I stand over him pulling pebbles out of his mouth or stopping him from pouring sand into his ears. He does fine in his stroller, sometimes for a full ten minutes! Back indoors while I cook a meal, my husband tries to keep him entertained but all he wants is to stare at the television and throw his toys. Oh, the toys. The money we spent on toys and all he does is look at them and throw them. He is not content until every inch of the carpet is covered with toys. The scattering of toys makes it harder for us to stumble over as we rush to pull him from an outlet or from bobbing for bubbles in the potty. After dinner and a bath we begin the bedtime battles.

Matty has decided that he hates bedtime. We used to put him to bed and he would play happily there for sometimes up to an hour before falling asleep. But not anymore. For the last several weeks we lay him down and he cries. Then, he begins to scream. We begin taking turns rocking him. First in the rocking chair, that lasts about two minutes, then up and walking. We can tag-team this task for up to three hours per night. Or, he falls asleep after only an hour then wakes up later and starts the screaming routine and the tag-team task then takes up to FOUR hours.

No rest for the weary. The stress of the ordeal has caused me to tear some muscles in my arms. The pain of that rivals the pain of my fibromyalgia and the severe arthritis in my neck. I often do this rocking in tears. But I push on because my husband can only go so far (and he ALWAYS goes too far) before getting short of breath. But, it isn’t all bad. Matty is on a waiting list for day care and if we are still alive in three months, we will finally have a break! We are dangerously close to burning out now. We have no help what-so-ever and we just pray we will make it another three months and that no one will come along and push Matty back on the waiting list. We are so tired. Our marriage is struggling. Our health is deteriorating. Our hopes are fading.

You may ask, how does one love a child like this? Going along with the puzzle that Autism is, …you just do. Because of my limited me time, it took four sittings to write this all down.

Reblog this post [with Zemanta]

Saturday, March 6, 2010

Ok, so it's not all flowers and rainbows with autism

"Mama, I don't LIKE it!" My JBean wasn't happy. Although this is not that uncommon, it was still a concern. The Nutcracker was coming up, and she was due to perform.

Last year, she was a flower. "I liked being a flower mama. Flowers are graceful, and princess-y. It was a pretty dance." This year, she was a lamb. She is less-than-thrilled.
"I hate the Lamb Dance! It's stupid. The costume is silly, I look like a little kid." I figured reminding her that is indeed what she is? Not so helpful.

Early on, I told her she didn't have to dance if she didn't want to. The Stage Mother? I am the furthest thing from that person. You won't see me pushing my children against their will. I have a theory about extra-curricular activities: if it isn't fun, what's the point? This may be because I was, if not born with two left feet, in possession of them now. Dancing well is hard for me, and I don't have autism. Still, if I were to try to dance, with actual choreography, you would think I was having a seizure of some sort.

I have given her every opportunity to bow out gracefully. She won't be a prima ballerina; she is still in the first-level class. All of her friends have pretty much moved up a level. She just isn't ready. As a parent, my heart hurts just a little bit for her. I worry as she gets older, girls will make fun of her. But she won't quit. She assures me that she wants to dance. And she does. She just doesn't love this dance. Still, she is trying, and that's all we can ask. To me, that in itself is a victory.

This Spring, she again will dance. This time, she will be a rainbow. She will wear a pastel-colored tutu. She wasn't excited about the costume, but she'll get used to it. And I have decided to get her some private lessons to get her "over the hump." I am optimistic that she may improve. She told me she was passionate about her dancing. I guess it is good to be you really have to be good at something to love it?

Now I am looking for a triumph over the fear I have for her. The great, white-hot worry that wakes me at night. I think of the time that is coming, soon, or not-so-soon, when the girls look at her and laugh. When they look at her, whispering behind their hands. When it hits her just how behind she is, and that without 10,000 hours, she just isn't going to get those dance solos that she may be wanting. She will be tried, and found less than adequate. And though we cannot keep our children from pain, it is still a very difficult thing to watch. A lump in my throat and tears pricking my eyes, I wait.

Tina has two left feet and the right attitude, usually. Chocolate helps. She also blogs on Send Chocolate Now. Autism Sucks is her brainchild.
Reblog this post [with Zemanta]