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.