Thursday, March 25, 2010

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.


Alex said...

Oh, my poor friend, you are a very strong and courageous and selfless woman. I read this after my son's parent teacher interview this afternoon where his biggest struggle is trying to make sense of reading and taking direction.

Stay strong and know you are doing a great job.

Jen said...

Grr to the grade 4 teacher! That is my biggest nightmare! :( . Oh MMif icould I would send you a crate of wine, big bunch of flowers and stack of movies...wrapped in a padded room to escape to and enjoy them all. What a long journey so far, makes me teary as we have only just begun it here. Thankyou so much for sharing this here.

Madmother said...

I just hopes this helps even one person.

I am not selfless, Alex, I am just a Mum. I love him to bits, he is an incredible kid and unique in so many ways. He has a purity even Jesus would envy, and strength that puts me in awe. I don't want to change him, I just want to help him have an easier life and to be the best he can be using these incredible gifts AS has given alongside the weaknesses.

Lori said...

What a very articulate woman you are MM. Thankyou very much for sharing that.

E. said...

I read all three posts last night and was overwhelmed. So I am back to say... Wow.

Thank you for writing this. It's amazing how different our ASD journeys are / can be. Just like our children, really.

Kakka said...

Thank you for sharing this story, I know it will help others with children walking the same path. Even with the hard times that may be ahead, savour your beautiful boy for one day he will be a man just like my son and suddenly you realise that all the work was worth it and the tough stuff in your head disappears. Not that you ever stop worrying, after being their protector and their champion for all the years, it is still the first thing I do. My daughters remind me often that he will be 30 in a little more than 2 years, and I really need to let him sort it out but my life journey over so many years was wound so tight to his that it is hard to let go.

Madmother said...

Kakka, I would love to hear more of your son's journey if you ever decide to tell it. Seriously, your comments have helped me so much, I think his story would give hope to many.

Epskee said...

I'm so glad you wrote this. Although they are nothing alike, Sproglet has ADHD (and yes he actually has it, its not a cop-out) and some of the things you have struggled with are daily battlezones in our house too. Sometimes it's just nice to know others out there are doin it tough too, especially where I am from, with all the perfect families in perfect houses living perfect lives.....

I'm finding it hard to let all you have said sink in, especially with the medical crap I'm needing to delve through myself right now, and I wish I could say something encouraging, but don't know how. (Not like me to be lost for words hey!)

So I'll just say this. Thank you.

Madmother said...

I have several friends with kids with ADHD, and there are a lot of similarities (and differences). All three of the kids I know well are genuine cases (will not go into details here). I would compare the two experiences as being in two different trains on the same rollercoaster. You can wave as you go past, but the ride is a personal experience all your own.

Thanks appreciated, let's just say it was not the easiest story to write.

DarNonymous said...

Just read your 3 absorbing posts. Do you know that your posts & creative writing are so full of YOU & not just YOU BASED AROUND YOUR CHILDREN, that I had no idea this is what is going on in your life. Shows your amazing strength of personality.
This was such an amazing insight into your life, I'm glad you shared it in such a candid way.
I think this insight would be helpful to many parents in different situations. Is it ok if I put a link to it?
You are strong & amazing to have battled for what you felt was right & the amazing things Boy 1 has achieved.

Madmother said...

Happy to be linked. Just want it to help people (1) understand and (2)to not feel alone if they are living through this too.