The What If's... FYBF Our Story

Firstly, a disclaimer. I am not a psychologist, psychiatrist, paediatrician, doctor, speech therapist, occupational therapist or any other type of specialist. What I AM is a mother of a son on the autism spectrum, which in my opinion, makes me a little of all of the above.

My oldest son is fourteen years of age. He stands five foot eleven inches, tall, slender, and to be totally unbiased, drop dead gorgeous. He is in his first year of high school (Grade 8 here in The Queen's own land). His smile could break a million hearts, his laughter warm a million more.

My son. My beautiful son. My wonderful amazing straight A, acing school, report card written in such glowing terms you need sunglasses to read it, son.

My son who has Asperger Syndrome.

He was three when we began this journey. Three. He was five turning six when we began to formalise it. Back ten years ago there was no financial aide, little support and not much information. Early intervention was a mix of public and private chaos. We were lucky, we muddled our way onto the very path that is recommended for all littlies on the spectrum today. Speech therapy, physiotherapy, occupational therapy, psychologist, social skills group... somehow in  the confusion we got it right.

Which leads me to the point of today's post.

Intellectual impairment and autism.

My son was assessed using all the modern diagnostic tools, I could use all the lovely letters here but they may not mean much to a lot of you. Things such as CARS, WISPII, DSM IV.

But the actual results do not stick in my mind, what is frozen there was the psychologist's words.

Moderate Intellectual Impairment.

My son. My baby. My beautiful boy. I cried that day. And probably the day after too. It is all a little foggy now.

What I didn't know then is that the IQ testing part is notoriously inaccurate in results when testing CHILDREN ON THE AUTISM SPECTRUM.

What I didn't know was that these amazing kids do not test well at all, and their ability is often recorded far lower than it actually is.

What I did realise within 48 hours was whilst testing was well and good, he was still MY son, the exact same child as before diagnosis, before testing, before this specialist's words.

My son.

Whom nobody knew as well as I, his mother did. And in my heart there was no doubt that he DID NOT HAVE AN II.

Over the next few years many people, teachers, specialists, parents treated me with sympathy as they decided I was delusional or in denial. I even had one senior special needs educator (they brought in the BIG guns to deal with me) tell me I was "unduly scaring my child with my inability to recognise his shortcomings"... yeah, that one I can quote word for word nearly a decade later. 

Poor, poor woman. Silly, delusional Madmother.

The crazy woman.

The mother who knew, loved and accepted her child whilst still believing in him. The mother who fought tooth and nail for his rights, for who she KNEW in her heart, he was, for the man she knew he could be.

For the young man he is today.

I guess my point is this. For those of you on the start of this journey, believe in yourself. Trust your instincts as a parent, have the guts to stick to what YOU know your child to be no matter what the so-called experts say.

Boy 1 Grade 7 Graduation 2011

It is worth it. It is beyond worth it, it is incredible, amazing, heart-filling, bursting with pride, jaw-droppingly WOW!

But He's Doing So Well!

He seems so normal... He is normal. Normal for a kid on the autism spectrum. What is normal, anyway? Or should I ask how you personally define normal?

He is doing so well. Yes, yes he is. But do you understand the little things we do every day to keep him on track? The things nobody but myself, and maybe his Dad and brother would ever, EVER remember to do?

You should be proud of him. Oh, I am, believe me. Especially as I know the effort it takes both him and us to keep the act up. For it is an act, you know. There are things that are a part of his nature, a part of the syndrome, that just would not be acceptable in this society.

I couldn't do what you do. Um, if it was your kid you could. You would. You don't get the choice.

But he's doing SO well! Do you know I make him laugh? That constantly I make little jokes, or smart comments, I twist and mock and cajole until the mirth explodes and drowns the anxiety in endorphins? Did you know sometimes he is so overwhelmed with the pressure of life that he hits his head and pulls his hair screaming "I can't do this anymore!" Do you know a lot of the time I want to join in? Do you know that the stress can overwhelm every part of his incredible mind, and stunt that beautiful brain? That sometimes I need to go in, soothe, talk, oil those mental cogs with silliness until the frozen fear melts and allows the intelligence to shine once more?

Do you know I worry endlessly about what would happen if I was not here? Who would he turn to, who could take away the pain, who could bring out the positives whilst minimising the negatives? Who knows him through to the truth of his soul and pushes the perfect buttons to make it right?

Who saves him from falling if I am gone?

Who?

Who would see the beauty and the endless potential of a boy who soars into worlds unseen by others all within the mind of mayhem?

But he's doing so well...

The Road Less Travelled 3 - The Tale of a Boy & his Journey into Autismness

This series of blog posts is also available on Autism Sucks

Part 3

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. We are now at the third stage of our expedition, the crucial stage. Hormones can be the blockage that derails the train, and we must work towards helping him plow on as best we can.

The first part of the section is fact. The second part, in blue italics, contains the less rational emotional journey.

The School Maintenance Years Eight to Twelve Years of Age:

• Grade 2. New year, new teacher. I am astonished to find out they do not communicate with the teacher from the previous year. They do not want to prejudice or allow others' opinions to colour their judgement of a child. This year again, we have to explain that although he appears to tune out, ask him a question and he will amaze you with what he has absorbed and understood. We are grateful to have retained the same aides as the previous year, allowing for some continuity within the class. We write poetry as part of his speech therapy. We arrange an appointment with the Minds and Hearts clinic, an affiliate of Tony Attwood's clinic in Brisbane. Talking to the AVT there seems to be little doubt he falls under Asperger Syndrome, but we want to be sure. He is thriving academically with no sign of the intellectual impairment suggested. We meet with the psychologist that runs the clinic, Michelle Garnett. After many tests she confirms what we knew in our hearts, he has AS. Boy 1 has impressed her with his knowledge and understanding of emotions. The only one he cannot understand is deception. I am not surprised as he believes in the good in most. She asks if they can use him as a case study for their conferences, to show what one can achieve if you do it right. Again, positive feedback. We ARE doing this right. He tells her she is very beautiful as we leave.  How can they not talk? Surely, when this child is classified under Autism Spectrum Disorder it is crazy not to? These children thrive on routine and structure, each one has different triggers, individual sensory issues, each is unique. Why would you put the child AND the class as well as yourself through weeks of hell when it can be avoided? Dear God, this system is flawed. It soon becomes obvious she initially assumed ASD meant an II as well. He soon rectifies that opinion, but still she does nothing to challenge or stimulate him. This is going to be a coasting year, not the first, certainly won't be the last. Instead he reads his encyclopaedias at home, and researches things of interest, he plays his educational computer games. His meltdowns are less. The change of diagnosis is not recognised by the school, but we knew it would not be. They do not think Tony Attwood is an acceptable expert, and yet the rest of the world outside of Qld Ed does. To me this says more about the school system in this state than it does about Attwood.
• Grade 3. Another new teacher, same aides, and the job share teacher is his one from Grade 1. Again we start from scratch but it is soon clear that this teacher has expectations. This teacher has ideas. This teacher is open to any suggestions or advice I can give. Hooray - this will be our year of success and progress. She calls him the Little Professor. She is one of those rarities - a born teacher. Tough, loud, authoritarian, compassionate. He blossoms and thrives. And goes on his first solo playdate whilst his mother sits at home counting the minutes and dreading the phone ringing. It goes well. He makes another new friend when his other mate repeats Grade 2. He tends to have intense friendships which are not always smooth sailing. His obsessiveness can be hard for other kids to cope with. It is even harder when the friend also tends towards the obsessive as this new one does. We lose our second aide, the first leaving due to pregnancy. We have a new lady, but do not replace the two-day contract. Our wonderful AVT is replaced by another. One who is a textbook reader, with no idea about the individuality of the child. One who wants to come in and change what has worked wonderfully for three years. We, the parents, and the two teachers batten down the hatches and refuse to let her stuff it all up. At this point he is coping well with three days a week with an aide. The principal continues to support us. I now call him friend as he has done so much and pushed so many boundaries for our child. I am so much more relaxed this year as I know these educational professionals have my son, as an individual with Asperger Syndrome, and what is in his best interest at heart more than ever before. On one of his bad days he climbs up on the fence at the top of a two-metre drop and threatens to kill himself. Terrifying. I (after defusing him, talking it out and making sure it was a cry for help not an absolute attempt at suicide) wait till he is asleep then drink a bottle of wine. Days later I learn his teacher had done the same thing, sitting crying for my son and his desperation. Luckily it was a Friday. To think she cared so much that we were not that different in our depth of reaction...  This is our year of big jumps forwards and I am proud. Sadly we already know next year will be the downturn. We increase our aide days back up to five to buffer the child, not help the teacher this time.
• Grade 4, the year of hell. We knew it would be bad. We had no idea how bad. Not only did we have an inadequate teacher but it was also the year bullying did untold damage and the SN teacher took control and undid years of work. It was the year of regression and disintegration. The year of anger, pain and fear. The year I wonder if we have lost the battle. We found a new psychologist, a male who specialises in ASD, and initially is part of the Minds and Hearts group. Initially the aim was to build a professional relationship to be ready when Boy 1 launched into puberty, but now it is a lifeline for us. It is also the first year he goes away to school camp, accompanied by Big Boy. Not a great success, but an achievement none the less. I knew it would be bad. I just knew it. SHE was the one who told us our second child was ASD, then ADHD, anything to cover her inadequacies. Our paed made the comment that the teacher was the one with issues, not the child. No matter what we say it all comes down to a power play. She goes against our advice purely to show she can. Boy 1 plays her like a violin, acting the poor little autistic child to the hilt. She responds with hugs, and lets him do whatever he feels he wants to, which is very little. Meltdowns become a regular daily occurrence as he gets to leave the classroom as soon as he launches one. I later find out she has told him I would homeschool him if he cannot cope in the class. Offering him his greatest wish - to be home with me. As his behaviour and control spiral downwards, she makes the ultimate mistake. When I am ill, Big Boy is away with a friend fighting for their life, she sits me down and suggests he does not come for full days, and not every day. My God, she has underestimated me once again. I go straight to the principal after making it clear who is the inadequate one in the equation, and that she has created this situation and by hell, she shall deal with it. Boy 1 and I spend the evening cooking and sobbing. Now he knows he would be going to a new school, without his peers and friends, without his brother, without his aides. Not the dream but a nightmare for him. The hard thing is he now has to reign back in the behaviour, he has to take back control, he has to step up once more, but it is all the harder this time as he has let it all fall apart and must re-learn and re-use all those years of emotional training and the tools he was taught. Slowly, with no help from the teacher, he turns it around. The strength of my son has me in awe yet again. His wonderful psych is there every small, tentative step of the way.
• Grade 5, the year of recovery. An all boy class with a male teacher. It works well. The teacher knows he has a lot of ground to make up. With all the children from my son's class of the year before. Boy 1 is lucky, he is a very bright child, others have not fared so well and struggle to catch up. This year he and I go to camp, with Boy 2 as well. An outstanding success as he pushes well beyond his boundaries and comfort zone. He starts guitar, and loves it. He thrives in the black and white world of a strict male teacher. He copes so well, and understands the boundaries in this testosterone driven classroom, even when he meltsdown he just takes 5 outside the door, gathers himself up and returns to his work. He has grown up so much, taking a lot more personal responsibility as I look after my sick mother early in the year. We have a new SN teacher, the old one returned but on a job share basis. I refused to have her work with my child after the debacle last year. We also have a new principal and must tread carefully until we know her. Things are looking up after the prior year of anguish.
• Grade 6, the here and now. The year of growing up. He is twelve, and puberty is breathing hot and heavy on our heels. I am scared, my once loving, reasonable child is being replaced by a belligerant pre-teen. One who is sullen and uncommunicative. The child who would never shut up is now becoming morose and secretive. Most days I am able to talk, joke and love him out of it. We realise the pressure is on at school. The pace of the composite 6/7 class is frenetic - all the kids are feeling it. It is almost like high school, in fact they say the kids who come out of these two classes are the most prepared for secondary school. But that does not help his anxiety and stress levels now. It does not help my concerns and doubts. Have we mis-calculated? Will this be his undoing, not his making? Will he burn out before he even looks at getting out of Primary school? We are in the unknown, the emotional quicksand and all we can do is put one exhausted foot in front of the other and hope we don't sink. I am tired. We are all so very tired. But we have no choice but to continue. The amount of homework and assignments is incredible. The late nights are not helping but it has to be done. His anxiety is crippling his ability, I have to be with him counselling, defusing, encouraging him to complete tasks. Each piece takes three times longer than it would if he would stop the moaning, the delaying, the prcrastinating. Tempers are frayed as my nights are spent on him. I am not sleeping.

This is where we stand today. But underlying all of these years in autism world is the pressure of being his main focus, the only one who can talk him down or reason with him when he is in full meltdown. He slept in bed with me until he was nine. I had little personal space or time, especially when he was younger and am always aware that I need to be contactable at all times. Every phone call grabs at my heart until I realise it is not the school or the playdate parent. It exhausts me and I often wonder what would happen if I was not here. But I am and can only believe I will be for years to come. Because this is a new battle now. Hormones and teenage angst will be entering into the ASD arena any day, and we must be prepared. As prepared as any parent can be against an unseen, unknown foe.

The Road Less Travelled 2 - The Tale of a Boy & his Journey into Autismness

This series of blog posts is also available on Autism Sucks

Part 2

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. At this second stage of our odyssey I had begun to see the differences between my two children. It was time to start asking questions, and looking for help.
The first part of the section is fact. The second part, in blue italics, contains the less rational emotional journey.

 The Beginning of the Therapy Years Three to Seven Years of Age:

• My doctor thinks I am nuts. Have asked for hearing test and referral to Speech Therapist. Hearing test is fine, they applaud how responsive he is to the questions. Speech Therapist is a nightmare. Broken, dirty toys, she speaks to me not him other than to chastise him. Tests him. Report comes back very bad. She states he will never socialise, interact, and suggests we send him somewhere for severely disabled children. I persevere for two more visits, then send Big Boy in with Boy 1 as I think I am over-reacting obsessive mother. He comes out ropeable with her. It is not just me. We cease. My heart breaks when she coldly states he has no future, I quickly gauge she feels we are wasting her time, that he cannot be helped. I know I am over-protective and worry I am not aiding my child if I stop him seeing her. It gives me validation when the calm, rational, reasonable Big Boy comes out wanting to kill. It is the first and last time I will ignore my gut instinct when it comes to my children.
• The meltdowns are amazing. They can last up to two, sometimes three hours. If I go out without him Big Boy has to deal with them alone. If we are shopping and I walk into a store whilst they sit outside he will scream in hysteria. Big Boy has been accused of not being the father. It is heartbreaking for all of us. I feel trapped, suffocated and yet I cannot stand to hear his distress when I walk away. How is a mother meant to allow her child to suffer like that? It is not normal, it cannot be normal. At night he sleeps with his nose nuzzled to my neck, content to be with Mummy. Safe from the faceless fears that dog his days. He is angelic in sleep.
• Boy 1 starts long day-care for 2 days a week. He is three and a half. He interacts little and parallel plays instead of joining in. The separation anxiety is off the scale. They quickly pick up something different and refer him to the Development Assessment Team (DAT). They also have a speech therapist (private) which attends the little centre. She is a Godsend. Boy 1 loves her. We are to continue with her for the next three years until her retirement. Many words of encouragement and wisdom are spoken, as he captivates her with his ability to laugh at himself. The day-care is not one I am happy with, but he has made a friend and does not want to leave. It was a nightmare getting him through the worst of the separation anxiety, and I think if we moved it could well break both him and I. The director is quite nasty about his DATS assessment and the time it takes. She wants the funding, but has no interest in my child. Thank God for Ros, she is a blessing. She loves how Boy 1 throws his hands in the air when he stuffs up and head back, bellows a huge laugh going "Whoops, silly Boy 1!" She tells me she has seen thousands of children in her many years of therapy, but never one with such an ability to laugh at himself. It will get him through life if he can keep this sense of the absurd, she says. She also pulls me up on my pre-conceptions of his life. When I burst into tears and sob: "He will never backpack through Europe or Mexico by himself like I did!" her retort is, "Oh come on... I would never back pack by myself. Stop casting your aspirations onto your child and allow him his own!" I LOVE Ros. She gives me hope.
• DAT. For two and a half years he has physio and occupational therapy, and the social worker supports us. We choose to remain private with speech as we have found such a gem. Weekly. All weekly. By now we are seeing a paediatrician and later a psychologist. The paed is sure he is on the spectrum. He does not want to formalise it until absolutely necessary to access help. We lose the DAT services and go onto the long waiting list for Autism service providers once he has this label. The service this government group provides is a lifeline for us. DAT is full of wonderfully compassionate professionals. The social worker is astounded when I burst into tears crying it is all my fault. Big Boy is floored, he had no idea I blamed myself, wondered if the haze of grief had damaged my child. If I had caused his autism. The paed shattered my heart when he told us his thoughts on the path we were going to have to walk. PDD-NOS, again google becomes an enemy. Dire predictions, limited abilities, a life less worth. I stop reading, in my heart I know it is not his road. At therapy, Boy 1 captures hearts yet again. He certainly creates a lasting impression. Years later, when Boy 2 is found to have the low muscle tone and fine motor skill issues, we are back at DATs. It is like witnessing the return of the long lost King. "Boy 1 is here... Look who it is, Boy 1! Boy 1 - so good to see you, how are you and what are you doing here?" He loves most of the therapists, but I am amused, as is the physiotherapist, when he treats one of the work-experience students with disdain. This young man considers working with children below him. And it slowly becomes obvious to us adults what the child sees from the beginning. I quickly learn to accept his judgement on others. Boy 1 works out people's true nature no matter how deeply they have hidden it. He gives his all to those he respects, and they respond with respect in return.
• We become the social organisers of the school. The paed has suggested we push one-on-one friendships in the sanctity of his safe haven - home. Initially it is a case of trial and error; some kids just don't gel with him and his unique brand of quirkiness. Slowly we find out those that work for all concerned. Our house becomes known as the house of fun, kids now clamour for an invitation. It will be the bargaining tool we use in the future. When bullying arises Boy 1 quite plainly announces that only friends get invited to his house. It is amazing how our reputation spreads and the desire to be one of the lucky few who frequent here on a regular basis grows. I just wish someone could see how much we need a break and offer to have him, just for a few hours.
• In January just before he turns five, he has his school immunisations, including another MMR injection. He regresses immediately, but more scarily, he has a rage attack at day-care and loses twenty minutes of his memory. We do not know what to do, the GP only makes the comment "Well, we know not to give him that again." In desperation we turn to natural medicine, a huge step for a mainstream family. We attend a local homeopath. I am astounded as she recites my child and his problems to me, including things like the drenching night sweats and the sensory issues. Within thirty-six hours she has managed to return him to a closer version of who he was a week prior. So incredibly obvious is the change that when Big Boy returns from work he comments "Boy 1 is back!" I am filled with guilt. Why did I not question more, why did I blindly accept the advice and platitudes of the doctors? I now research and am devastated to read the facts and stories out there. What have I done to my child? How much have I wronged him in my ignorance? It is a guilt I must live with forever. We deal with meltdowns constantly again.
• At five, he starts preschool (Qld Education system prior to the introduction of Prep). I have taken all reports in, spoken to them, but still they are overwhelmed by the reality of my son. This is the year the battles really begin. School is hard. Sensory overload hits on a daily basis, and multiple incidents. He brings one true support and friend from the day-care. This one child is his saviour, the go-between for the teachers and the other children. Without this friend he would not have survived his first year of school. In the later stages of the year his teacher suggests I look at the Special Education Development Unit at a school thirty minutes away. It is not what I feel is right for him, so we stay battling forwards. We have a meeting with teachers, aides, school guidance counsellor, speech therapists (school based and private), psychologist and us, the parents. We mark out a plan for the following year. He is still completely ambidextrous, and the physio and OT decide we need to concentrate on choosing a dominant hand for him. Right handed it is. Have to work on stopping the mirroring. They are pushing for him to attend the SEDU. I cannot rationalise my emotion, but my gut instinct is waving a red flag frantically. It is not for him. How on earth can he learn how to behave as others in the "normal" zone, if all the kids he socialises with have issues of their own? And why, did they not realise his issues when I was open and informed, delivered reports and information, ASKED them if they felt they could cope BEFORE he started? We start seeing both speech therapists, as Ros is winding down in preparation for retirement. They work as a team, and we are impressed by the public system we had heard such bad things about. The teacher is pushing to repeat him. I am unsure. She pushes harder until in a grand battle of the wills, I succumb. She is right, and the fact that this softly spoken woman cared enough about my son to raise her voice and fight on in the face of my belligerence... She has earned my respect and undying gratitude. Sadly, on the other hand, the special needs guidance counsellor is ineffective and, in reality, of no use to us. I ask her about privately funding an aide as Qld Ed will not provide support prior to compulsory attendance (preschool is voluntary), she tells me it cannot be done. I respectfully request she ask her superior as I had heard it could be. She refused, said it was a waste of time. I went over her head, in fact jumped straight to the head of the department of the Special Education section for all of Qld Ed. It could be done if the principal agreed. He agreed. The final straw in her fall in my esteem is when, after fighting us tooth and nail to allow him to go into Grade 1 and the SEU, when we tell her of the decision to repeat him she drops and plunges her head down into her hands on her lap and says: "Thank God, I could not bear to think of him in that room with all those violent, badly behaved bigger children..." HANG ON - you were the one insisting it was the thing to do that was right for him! And you said it would be best for him?
• We repeat him in Preschool, but taking the option we fund an aide to be with him. A wonderful woman, Barb, with loads of experience comes to work with him on the two and a half days he is there. She teaches him tools to help him cope. In the beginning of the year he is officially diagnosed as PDD-NOS under the autism spectrum umbrella. The psych brings up an intellectual impairment possibility as well. Later in the year, along with the continuation of the other therapies, we attend a six week social skills group. All the boys are six, all diagnosed PDD-NOS, and attend once a week under the supervision of the psychology department of a local university. It is not a success. For the first time he is aggressive, picking up the bad behaviours of the other children and learning no good ones. We start looking at the school issue for grade 1. Finally it feels like we are working on setting the bar higher for him, and giving him the tools to succeed not fail. The social skills group was recommended by the psych. It becomes the first time he tells me he hates me. Over a packet of Twisties. He is devastated when I ask him how he would feel if I said that to him. He tells me that another boy told him he says that to his Mum and she gives him what he wants. How can this be helping him socially? There is also a group for the parents whilst the children attend. I am amazed when one of the mothers quite nastily comments that I have it so much harder than the others because my child is so much worse. Am I living in a dream world? Do I not see him as he is? For that woman whose child regularly is violent, steals food and is tragically obese, is spoilt rotten by being given anything he craves because "he doesn't understand NO..." to tell me this really upsets me. Then I get mad. Stupid, stupid female. This group is not about competition, it is about support! No wonder I cannot stand the Autism groups of the "poor me, but you're worse off" mentality. Keep mouth shut amazingly. Resolve never to go to any of these group screw-ups again. Feel very alone in my belief in my child and his ability to grow.
• Our private ST has retired, and the school one has strangely vanished. From fortnightly sessions it falls to two in seven months. We go private again, and also for OT as we can no longer access DAT services. He is ascertained a level 5 under the Qld Ed system, 6 being the highest need. We continue all our programmes at home as well. We discover we have no control over the time he spends in the Special Ed Unit if he remains in the closest school. We decide to go to the smaller school, talk to the Principal, organise again to fund an aide. We look for a new aide as our lovely Barb will not be coming with us. We find two wonderful women to job share the role five days a week. The system is not happy with us. The wheels have fallen off the public arena with speech and OT. A change of ST has them vanishing off the face of the earth. Luckily I had stumbled across another private therapist in the shoe section of Myer. Don't ask. We also follow the DAT's OT into private practice. In a bizarre twist the OT and the ST share a desk at disability services where they both work part time. Brainstorming about Boy 1 and the best way to join together to help him becomes their lunchtime habit.  The school issue raises its ugly head. We had decided to continue him in this school, not move him to our original choice, the other smaller school on the other side of the mountain. We figure we can continue to fund the aide and mainstream him avoiding the SEU, but having it for back up. My reluctance to have him in there has many reasons. The person running it has been there for decades, is burnt out, uninterested in the kids, there for the salary. The carers there... well, if you had heard one of them calling it the spitters and kickers babysitting colouring in club would you want your child in there? And lastly, as I said, we want the bar set higher, not lower. And we feel he will never learn to conform if the children around him do not. As he is a born mimic he will mirror the bad behaviour just as much if not more than the good. We are wrong. Once he was ascertained we had no input or control on the time he would spend there. This all hit in the last month of school. We attend the placement meeting where our son's future will be discussed. They are insisting he has an II, and that we are scarring him by not admitting he cannot learn. A lot of harsh words are flung at us, but Big Boy is my tower of strength and we both remain calm. We take great pleasure in uttering the words "parent preferred placement" for the other little school knowing they can spit and curse but are legally impotent.
• We trial Dexamphetamine at the paed and school's insistence. A two month trial. They recommended we start in Grade 1, I refused stating I needed him observed by professional educators that knew him well. The teachers insist there is a big difference, all I see is a lot more aggression and anger in my once gentle, mournful child. He was never one to lash out, but he begins to seethe in rage. This was the child his teacher had complained broke her heart because he came to her with pleading eyes that expressed his pain, "My world is broken, can't you fix it?" I believe the staff mean well, but all doubts are confirmed when they mistakenly send home the year's daily reports which show NO FEWER issues during the drug trial than prior. We decide not to continue with the medication. He is leaving preschool unable to read or write, still mirroring to some extent, no drawing skills whatsoever. I am wondering if he may be dyslexic. I know he is smart, and yet he seems not to learn as the other children do.  I begin to realise they had believed he could not learn and so did not push or try very hard. He was packed into the too hard basket and I am glad to be changing schools for a fresh start and a new perspective. Instead of the Dex or Ritalin we start him on fish oil. Has a far more noticeable effect than the prescription drugs after the first few weeks.
• He turns seven just prior to starting Grade 1. A new school, new friends, new battles. His senses hit overload as he attempts to cope. The aides are invaluable, especially when he runs. Wonderful teacher; patient, loving but firm aides, he very slowly starts to find a love of learning. By halfway through his first year he top of the grade for reading, and more importantly, he is writing though under protest. He insists he cannot do it, he is no good at it, he is a failure at writing. He tells us the teacher at his old school told him so. The principal is his obsession. This wonderful man gives him a principal's award (once a term, only a few allocated) for improvement in writing. It is all the encouragement he needs to put new energy into trying to improve his writing skills. And every time he stumbles and cries he cannot do it, we all point to the award and say: "Look. Would you have been given this by Mr H if he thought you couldn't?" And he bravely struggles on. I cannot believe the stupidity of the preschool teacher in allowing him to see her frustration and doubt in his abilities. He now thinks he cannot learn. His excellent memory is becoming a disadvantage in certain instances, this is one of them. These kids just don't forget. He quivers when he sees the principal. He cannot leave the grounds without ritually telling him "You are a wonderful principal Mr H!" He feels safe, and on the bad days when I am called to pick him up, it is Mr H who will be sitting in sickbay, talking to him, keeping him calm. It is not an easy year. In the first group parent teacher meeting our Grade 1 teacher has to address comments made to her about why he is in mainstream. She makes it clear that it is a blessing for the class, most do not realise we fund 21 hours of the aide time, that Qld Ed merely supplied 4 hours. We know he is not an easy child, but we have not just idly handed him to them, we have given additional support, done whatever we can, whatever is requested. I am amazed by the end of the year, how far he has come with a little belief in him.
• We have a wonderful Advisory Visiting Teacher. She understands where we are going, and the hopes and aims of our methods. It is a pleasure to be fully supported. She asks me if I mind her using us as an example to other parents of the right way to do things. I nearly cry. Validation instead of condemnation. So rare. So wonderful.

This is our busy time. Between appointments we need to make sure Boy 2 is not missing out, we have to make time to do fun things as a family. Not easy when you have a child who hates crowds, loud noises, smells, tastes and new experiences. We are determined to break the rigidity of his life, though some days I have to wonder if it is all too hard and if we should just stay home and shut out the world. I know it would make life easier, but in the long term it would harm him. And us. And so we battle forwards.

 

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

This series of blog posts is also available on Autism Sucks

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.