Issues and questions to discuss when you go to your next IEP meeting

Image: Flikr creative Commons- Puuikibeach

We are on school holidays here in Australia so I thought I would sit and write a reflection on Individual planning meetings.  I know this blog has many readers who are parents of secondary age children who have gone through the IEP process.  Therefore I've put together a list of items to consider and discuss.  Hopefully this will empower you when you attend your next planning meeting.

I’m a special education coordinator at a college here in Sydney and also an advocate for inclusive education.  I thought I would write this post about getting it right in the Individual Education Plan (IEP) meeting.  I see the IEP as a plan for the year ahead.  I like to use the Engineer/Architect analogy when describing my approach to the IEP process.  The Architect has the technical knowledge of the systems and the workers. He/ she will know what will work within the system.  Like all professions you can sometimes get ridged Architects (special Ed coordinators) who can only work through one model and you can find remarkable Architects who can create a harmony between the clients (parents, students and school) and the fruition of the plan.  Therefore I find I get the best results from parents who come to the table prepared with a clear set of goals and willingness to problem solve and discuss strategies. 

It is crucial that this plan is in place, especially in a secondary school where students may have up to nine teachers.  I find having to deal with so many teachers’ expectations, systems and styles causes considerable stress and issue for students with Autism.
 

I find most parents of students with autism are excellent advocates for their children and are an excellent resource for strategies.  For example they know exactly what the best blockers are for managing their child’s stress; they know exactly what things will trigger anxieties and what things will inspire their children.  In an ideal situation the conversations are open and look to coordinate the best possible strategies to support the student.  In some cases however parents come up against that ridged architect (Special Ed administrator) and the IEP process becomes a dictation of what the school has to offer.  Therefore here is a list of considerations you should raise within an IEP meeting to enable you to be a better advocate. 

-          What targets do we want to achieve this year? It is important that a set of targets or goals is developed.  This will enable you to measure progress even if it is very small.  A goal may be as simple as saying ‘good morning’ to the homeroom teacher to as complex as self-managing anxiety through a behaviour strategy. 

-          What support is going to be provided?  It is always important that the student has someone who they can use as a go to should they feel anxious.  Will there be in class support?  What classes are going to be supported and what classes are not?  When exploring support it is important the student be consulted.  Thrusting close support upon a student is not always the best approach.

-          What happens when things go wrong? What safety mechanisms are in place when issues arise?  Does the school have a quite ‘safe’ place for the student to go to during break times or when they cannot cope.  What happens when the student has a meltdown or refuses to come to school?  The plan is never set in stone and should always be open to change if things are not working.  

-          Who do I contact when things go wrong?  I find that in many cases students with autism will bottle up much anxiety and will wait until the get home to ‘explode’.  A call from a parent will sometimes be the only indication that something has gone wrong.  It is important the you have a school contact who is available and willing to listen.  A classic example I can think of is a call I had this year that averted a meltdown when a parent called to tell me her son had forgotten his apron for cooking.  I was able to catch the boy in the morning and give him one to borrow. 

-          How and what information is disseminated to teachers?  This is important as there is nothing worse than going to a parent teacher consultation to have teachers surprised that the student they had in their class had Asperger.  Thankfully this is rare but unfortunately I’ve known it to happen.  It is also important all teachers are using the same strategies and understand the student. 

-          What curriculum strategies are going to be put into place to support the student?  I have a problem at the moment with a number of the students with autism who also have an intellectual disability.  The students love coming to school and the parents are so happy with the placement as it is caring and supporting pastorally but academically it does not meet the needs of the student.  Whilst as a parent you will not be familiar with the curriculum it is important to ensure the curriculum sets high expectations and students are not left sitting at the back of the class. 

-          How are outside agencies incorporated into the program?  It is common for outside agencies such as psychologists, Occupational therapists, counsellors, Speech Therapists to be present at the meeting.  It is worthwhile exploring how these are connected to the school.  If the support is external it is worth ensuring the school has a relationship with the outside support to reinforce or support strategies. 

-          What other programs are going to be put in place:  social skills groups, anxiety management groups, travel training, school to work transition programs.  It is important that these are explored

I’m sure there are other points that are discussed but this is a good start.  As you can see the meeting can take some time especially if a number of teachers and specialists are involved.  I’ve only been on the teacher side of the table so I cannot speak for parents so any additional advice on what works would be a great resource.

I also write a blog called Australian Inclusive Education it seeks to explore research and strategies for promoting Inclusive Education.

How Do I Explain It to Her?

She's almost ten, and she doesn't understand. Why is she different? Why does she still love and need her stuffed animals? Why isn't she interested in boys, or Miley Cyrus or Ke$ha (shudder) or makeup or Abercrombie & Fitch? (not that I would buy her clothes there...ever!) Why is it so hard for her to read? Do math? Talk quietly?

Why do her cousins tease her for things she cannot control?

She's almost ten, and she doesn't understand. Why is it so hard for her to control her frustration, disappointment, anger? Why does she clam up when she gets really upset? Why do her words fail her? Why does she see a speech therapist, reading tutor and feel so "little" (her words,not mine).

She wants to be a big kid. She wants to do the things they do. Sleepovers, going to the movies with friends. After all, she's almost ten. She watches Nickelodeon and the Disney Channel, and though I explain until I am blue, blue, blue in the face that those kids are fictional, their life is not reality, she still aches. For what she doesn't have. Maybe won't ever have.

She's small. She still wears dresses almost always, and has since she was a toddler. It's just what she likes. But she wants to be older, and look her age. She needs help to brush her hair, hates to take a bath. Her self-care skills still need...coaxing.

She's almost ten, and she doesn't understand. Why autism? Why her?

I can't explain it to her. I wish I could. I am in my forties.

And I still don't understand.

Tina blogs here, and at Send Chocolate Now. Autism Sucks is her brainchild. Want to write? email her! autismsucksblog, just add gmail.com

Bragfest...

For those who do not follow my main blog, which I linked to my writing blog, on which I posted 12 year old Boy 1's narrative piece... go HERE , BUT ONLY IF YOU WANT TO. And you know you do. Truly.

Yes, I am very proud of him, and a little shell-shocked.



, very proud mother of Boy 1 aged twelve.

How Embarrassment...

For those of you either too young to remember or not of Australian shores, the title refers to the catch phrase of a 1980's icon: Kylie Mole. It was then passed onto another Aussie idol: Effie from Acropolis Now. Google if you don't know...

Boy 1 is not happy. He is reaching THAT age where the hormones are taking over and thoughts are confused. His psych recommended we provide him some factual sex education material, before things went right off the rails.

We had (under his guidance) purchased two books for this very purpose: Secret Boys' Business (Fay Angelo, Heather Pritchard and Rose Stewart) and Making Sense of Sex (Sarah Attwood). When presented with both of these a year or so ago, Boy 1 looked at the covers (being a visual boy), blushed and walked away saying: "Oh no, those are too rude for me!"

Now it was time to try again. He read the first, under protest, and then only because I pulled the old Dr U said you have to card. We then asked him if he had any questions? Blushing, determined not to meet our gazes, he looked down at his shoes, and shook his head vigorously to the negative.

Last Thursday came and so did his appointment with his psych.

When asked by Dr U about his thoughts on the book and its contents... Well, I don't think this will last, but I have to admit to chuckling under my breath when I heard him say in consternation:

"Well, the whole thing is pretty disturbing really."

I'll definitely be storing that phrase in the mind vault for pulling out to use in later years, lol.

is a manic blogger at four blogs. The main two are her general ramblings and her derby blog. Oh, and she is mother to Aspie Boy 1(12&1/2) and Smart-arse Boy 2 (11 in a month).

Do you like Autism Sucks?

Look, we have a Facebook page, could you go and Like it so we get more exposure? As you know, I do this for the community, and not really much else, but I want more parents to know they have a place.

Help me to do that.

Go here: Autism Sucks Facebook page

Tina is the creator and head chick in charge around here at Autism Sucks. If you want to write, just ask! Her personal blog is Send Chocolate Now, because when you have kids with autism, life is survivable, but it takes chocolate.

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Guilt

Guilt:
1. a. The fact of being responsible for the commission of an offense.
b. Law The fact of having been found to have violated a criminal law; legal culpability.

c. Responsibility for a mistake or error.

2. a. Remorseful awareness of having done something wrong.

b. Self-reproach for supposed inadequacy or wrongdoing.


And then there is Mother's GUILT. An altogether far more powerful and irrational emotion. Mother's Guilt means we take on every let down and disappointment in our children's lives as our own. Mother's Guilt (MG) amplifies our feelings of inadequacy and makes us question our judgement. Mother's Guilt is responsible for our self recrimination and our feelings of blame and well, guilt, for our children's issues.


I doubt there is a mother alive who has not questioned herself or uttered those words to herself: "Did I do something to cause this?"


And as strong as we feel at times, there will always be times when the old MG kicks back in and we worry about our choices, our family unit, and especially our different kids.


I am drowning in the sea of Mother's Guilt at the moment. With Boy 1 hitting the terrifying section of the ASD rollercoaster track known as puberty we are facing a whole new set of challenges previously unseen. With me hitting peri-menopause Mother's Guilt takes on a whole new dimension and removes the calm anchor my firstborn relies on during the storms.


Put into the equation a younger Boy 2, only nineteen months behind Boy 1, bearing the brunt of all this emotional turmoil from both directions, plus being chastised at school for things well beyond his control such as arriving late after a horror Boy 1 morning...


And I am drowning in Mother's Guilt. 


Really should not have read "House Rules" by Jodi Picoult whilst in this vulnerable frame of mind. Put into words all my fears for both my children.

also writes at four other blogs including Meaninless Meandering From a Madmother

World Autism Awareness Day.

Here in the land of Oz, the sun has risen on World Autism Awareness Day. Also known as Good Friday. A happy Easter to all, and may your awetism filled lives be happy and full of love and joy.

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.

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.

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.

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 passionate...do 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.

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What color is autism?

“Isn’t the sky the most beautiful shade of cerulean blue today?”

I thought he was color blind, because when I asked what color an object was, he would tell me the wrong one. In school, turned out not only did he know cerulean blue, as he told his teacher, he knew the entire box of Crayola 64 crayons! He wore an Indiana Jones fedora for three straight years. He wouldn’t wear anything but tan pants to “look like Indy” for at least two years. When he was younger, I had to flush the toilet for him, he couldn’t stand the sound. He loved water play and would spend hours playing at the sink. He hates to cut his hair. He can tell you more than you ever wanted to know about UFOs, Mythbusters and the latest video game to capture his interest, but he couldn’t tell the librarian his phone number. He cries easily, especially when frustrated, which also happens frequently. He knows what direction he is traveling at any given moment. He notices details that would escape most of us. Like the time they painted a gas station bench…the new color, the old color…doesn’t matter. He remembers. But he can’t recall his math facts. He doesn’t like doing activities that are not of his own choosing, and hates to perform on cue. He cannot eat gluten or dairy without a lengthy side trip to the bathroom. Consequently, he is on a special diet. He still moves snails out of harms way, just as he once did when he was two. He is now eleven.

She yowls like a cat when she is angry. Hours are spent in solitary play. She is very imaginative, creating elaborate worlds in her play, but other people don’t easily fit into her scenarios. She can be very rigid. She likes routine. She has a hard time with transitions, even when it is something she really wants to do. Her self-control, while improving, can be difficult. She eats almost anything, and more than you would think…she is a elfin little thing. She cannot read well yet, and doesn’t so much want to. She must be taught concepts repeatedly in order for them to take. Sometimes they do. She is a sensory-seeker, needing a lot of hugs, cuddles and attention. If she doesn’t get it, she will act out negatively. We call it “getting her pound of flesh” one way or another. Her whole life is a song. Even her voice is a song: a high-pitched melodious voice is used in conversation. Unless she is yelling. She speaks in half sentences. “Want cookie!” She is social, and loves having friends. She likes being in charge. She has trouble understanding changed decisions…she is certain they are lies. If I say something, I must follow through. She has a memory like an elephant, when it comes to things she cares about. She throws the worst tantrums I have ever seen. She is eight.

She loved to swing as a baby. At three, she threw horrible fits. I would have to hold her to keep her from hurting herself and me. In preschool, while other girls wanted to be a mom, she told her teacher she wanted to be a paleontologist. When her teacher expressed confusion she told her, " You know, a scientist that studies dinosaurs. Everyone knows that!" She taught herself to read at three and a half. She was reading chapter books by age five. She was a walking dictionary. She loves Biology, genetics, Latin, Logic. She is very literal, black and white and has a strong sense of justice. She doesn’t always pick up nuances. Interruption of conversations comes naturally to her, but not because she is rude, she just doesn’t get the rhythm of the talk. She understands sarcasm, but doesn’t appreciate it. She struggles with perfectionism, and a lot of anxiety. She taught herself to knit and play the piano. She tries hard to fit in with her peers, but there is always something just different about her. We say she is the “oldest thirty year old” we know. She is fifteen.

Some may say, “Well, sure, that is any kid!” But truly, my kids are like the amp in the movie Spinal Tap . Most amps went to ten. But the one in Spinal Tap went to eleven, “that’s one more, isn’t it? ” And that’s what my kids are…just a bit more.. a bit harder. This is what autism looks like in my house. I have no idea what causes it. I only know I watch my children struggle with it. We are fortunate, I suppose, since the picture I paint you is of high-functioning autism. They all have speech. They don’t spin. Or flap. But it still affects our lives. We walk on eggshells. It isn’t so much a cure I want…as an answer of what caused it, but if you ask my kids, they will tell you they want a cure. They say it is hard to live in their skin. I can see that’s true.

Every day, I see that’s true.

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom Orange County Special Needs Kids Examiner at Examiner.com, a featured blogger at OC Family and her own site, Send Chocolate reflects her passion for her children and autism. t Autism Sucks is her brainchild.