2009-05-16

Welcome to the Land of Gonzo a little chat about Autism

WIERDOS? WHERE?


If Sam the Eagle ever visited our farm he would leave muttering "YOU'RE ALL WIERDOS!" Perhaps I should rephrase that from muttering to screaming as he heads for the nearest point of sanity. In a way Sam the Eagle would be quite right - two of us on this farm have an official looking piece of paper from medical experts with the very complicated sounding Autistic Spectrum Disorder. Oh what a tragedy! Poor people having such a terrible thing life will be so difficult right? I haven't found having Asperger's Disorder a tragedy - it's just a diagnosis telling me I'm a little wierd now and then. I have my quirks I'll admit but saying having ASD is a sad state of affairs - on that I beg to differ. For me it's just a diagnosis - I've had for years. I always knew I had it - all I needed was a Doctor to tell me that yes indeed I was in fact someone with ASD. Other than that I get on with my life and deal with any issues if they arise in a positive manner - woe is me gets put in the trash bin.

MAYBE IT'S DA HOOMANS NOT US KITTEHS DAT R DA WIERDOS

Reading up on Aspergers and Autism began when my youngest child Michelle was born. She wasn't doing the things most babies did. She just sat and stared most of the time. She didn't move and she was about impossible to feed any solid food to. Tell me about it. I knew she was Autistic but of course those expert who tend to ignore a mother's intuition were insistent that Michelle did not have Autism. Oh yes she did. Not just that the Autism Gene is prevalent in my immediate family. My dad was a little off the wall - he was never diagnosed but we all knew deep down Dad was also affected by ASD. He was a sucessful businessman, a great father and had a huge circle of friends. So much for the anti-social part there.

I've read all kinds of stuff on ASD. Different diets, blaming MMR vaccinations for ASD, name it I've read it and came to just one conclusion. Do what you know works best. Someone somewhere termed the purveyors of special diets, supplements and intensive programmes for ASD diagnosed children as Autism Nazis. I tend to agree with them. Subjecting your Autistic child to a regime of gluten free diets, intensive over the top therapies and endless diagnosis sessions just doesn't cut it and in the end does it really work?.

Here's how I view Autism. Think of a room with a huge pile of jumbled boxes - and each box represents the things we take as coming naturally - none of the boxes are in order. For someone with ASD learning to speak,climb a tree, acting in an appropriate way, emotional response, motor co-ordination, creative thought. The boxes aren't put together in the room right. Sending your child to a specialised Autistic school won't prepare them to cope in the real world. The real world is a different place and yes people can be cruel - but sheltering our ASD kids from the real world won't do them any favours. I view helping these kids as putting all those jumbled boxes back ont the right shelves and into the right order. A bit like getting the missing pages of an instruction manual and putting them back into the right page order. Fill in the gaps and connect the missing parts together one step at a time.

When I took Michelle at 2 years old to visit Dr Mike she had only just started to walk. Speech didn't exist, and her fixation on her hat and her plastic books were the only thing that existed in her closed little world. Dr Mike is an expert of Autism and instead of telling me I had to start some regime of special diets, intensive medical therapes and heck knows what else - he told me to treat Michelle as NORMAL just as I had worked my way through the challenges I had with my Asperger's Disorder so it was that day by day I worked with Michelle to start her on her own journey to overcoming her challenges and I was on my own without David (the girls dad) to help.
IF I HIDE IN HERE THEN THE WIERDOS WILL NOT SEE ME

Dr Mike helped to organise an Early Intervention Teacher, a Speech Language Therapist and a Physiotherapist to work with me and Michelle to get things working together. They gave me the tools and the support I needed to get started. We walked every day for two long years - Michelle had a badly turned in left leg which with the right exercise walking,climbing, and playing returned to its normal position. The other day I watched her at 10 years old climbing a tree. A far cry from the terrified little pre-schooler hanging onto a playground ladder screaming while her Physiotherapist and I encouraged her to take the next step up. She can ride a bike, create her own artwork without copying. She writes imaginative stories and can read at her own age level. Why? Because I treated her as any other normal child making the allowance where I had to whil still being aware that some things couldn't be rushed. The first word I taught Michelle to say was HELP. And it worked. If she was scared or unsure she would say Help. I taught her colours by walking along the road and saying this is a yellow car, this is a yellow flower etc etc. One step at a time this wonderful little girl of mine has blossomed. She still has her challenges but she's now learning to overcome those herself.

My one huge criticism of the support by our government in New Zealand for ASD diagnosed people is that there isn't any. What little there is of it is flawed, under-funded and in need of a huge improvement. The only decent organisation for getting any information and help from is the New Zealand Autistic Association but even they can only do so much to help. Where I live in Northland the nearest branch for the NZ Autistic Association is in Auckland. Not their fault - buildings and staff cost money to maintain. One thing that needs to be done and that is for the government to stop cutting the budgets of RTLB teachers, Speech Language Therapists, Child Physiotherapist and Early Intervention Teachers. If a child with ASD is caught early then they have the chance to have a great life without having to be trapped in that room of jumbled boxes for life.

As for yours truly? Well it's like this I've overcome my minor glitch - almost. Now I'm trying to avoid doing my landscaping in straight lines. I think the old hose laId out in a curved shape should sort that out. They say in some writings on Aspergers creativity is lacking....so why do I draw mad cartoons then? Must be copied from the mind of Gonzo the Great...


Sorry Sam we're all Wierdos here and loving every moment of it.

17 comments:

  1. How I wish I was there to put my arms around you and your daughter to cry with you or laugh with you and say that I understand. While it is good that we have troubles because we grow in a way that we would not normally, who needs the heartache anyway. I do think that that hurdle is not the really tough one it is the person (people) who will not listen when God is telling them to pray and take their stand against that unseen enemy the devil and will not open up their heart to understanding and compassion. But it sounds to me, and looks from the photo on the page, that she is an overcomer and will make it to a successful life. And they both are beautiful little girls.

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  2. Well you know me Liz, you know about my oldest and I definitely empathise with you. It's a hard road but I don't think I would like you any other way than who you are. You're real, you're funny and you're you unique!

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  3. Hello you two

    Tina- I've had my challenges but what kept me going was my faith. Michelle and Inaya are wonderful girls and I was very very blessed to have them after being told I'd never have anymore children. 12 1/2 years after the birth my eldest daughter (24 yrs old now) I had two gorgeous little girls. A big hug to you and lots of love

    Amy - Exactly just as I love you for you. I wouldn't have things any other way.LOL

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  4. Hi Liz,
    I really appreciated this posting! I live with two un-diagnosed aspies...my husband and my son. It wasn't until I went back to graduate school a second time a few years ago in education that I finally learned how to put a name on those two guys. Here in the US everyone either rushes to have a label or avoids having a diagnosis.

    When our son was in pre-kindergarten the head of school said that since our child preferred to watch the other children playing on the playground equipment rather than join in the fun that he would never be able to play football (American style)!

    Both he and his father have this extreme brilliance and creativity...just not always very warm and fuzzy. Sometimes I feel like I am in a foreign country when I am with them but I have found various strategies that help facilitate our daily lives.

    My husband feels that in fact the Asperger's label applys to himself, however my son doesn't know about his own profile, I do not think. He is high functioning but he has so many aspie traits. I have labored long over how to approach him on this matter!

    Patricia

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  5. Thanks for following me back on Twitter and visiting my blog. I agree with treating your child normally and making allowances when necessary. I disagree with diets, supplements, schools and therapys. My son goes to a special school and it is helping him. He would not be able to handle a regular school because of how severe some of his delays are. He has to have OT and Speech Therapy. Although he is not vocal, he can communicate with an augment device. The supplements have helped him, too. We are working on implementing the GFCF diet to go along with the supplements, but doing so slowly. I don't want to just pull out everything and replace them. He would definitely rebel against that. When a child has extreme and multiple areas that need to be addressed, long term help is a necessity. One day, my son might be able to be independent. I don't know. Right now, and in the near future, I know he won't be. I also no that there would be no hope for him if he did not have the benefits of a special school, therapy and a nutritional & dietary plan.

    I enjoyed reading about you and your daughter. I think what the two of you have accomplished is great.

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  6. Hi Patricia and Tammy

    Patricia..yes I know where you're coming from there. I knew already I had Aspergers and took it upon myself to go and visit a specialist. I admit reading the initial diagnosis letter really upset me but I researched Aspergers then made a conscious choice to recognise each issue as it arose then I dealt with it once issue at a time. I've done the same with Michelle as well only with Autism a little more care is needed. You'll find people with Aspergers quite often are very high functioning. My IQ is way above average - even though at 12 my parents were told I was a complete idiot and wouldn't do anything much beyond staring into space. Well look at me now. Here I am.LOL! So don't worry I understand fully. I'll be writing a little more about the subject as I go.Gonzo would be proud.LOL.Love and hugs to you.

    Tammy - you're doing exactly what you know is best for your very special boy. No certainly not you can't just throw away what you've been doing and some children take a lot longer than others. Michelle wasn't toilet trained until she was nearly six and that took a lot of work. Your son will end up having an independent life because he has you for a Mum. My nephew Joel is severely autistic and unfortunately the school he went to did him no favours at all. He's now 17 and there is a great concern that he will never achieve independence. I'm just glad you have a great school for your son, the right people to help you and the will to see him make those little steps day by day and he will. Be proud of yourself and it was wonderful reading your blog. I'm following it now. Hugs to you.

    Take care both of you
    Love and hugs
    Liz

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  7. I sounds like you've done the right thing with your daughter. How wonderful that she's been able to overcome obstacles thanks to your approach. Funding seems to be the same problem worldwide.

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  8. Hi Sonia
    I was on your blog while you were on mine. For Michelle yes this approach I took worked. I think for each individual child it means a different approach. I feel for Michelle it has been the best thing and for myself as well. Yes funding is a problem. Sad but true. Most support is done through the Autistic Association here in New Zealand and they aren't well off either. Great organisation.

    Great to hear from you and I loved your last post. Fantastic!

    Take care
    Liz

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  9. My son and hubby are both on the spectrum, hubby currently getting a diagnosis from a specialist while my son was diagnosed age 2.
    We did what "the experts" told us to until I finally followed my gut instinct,removed him from mainstream school a couple of years ago and began homeschooling him.
    He is so calm, relaxed and happy now that at age 12 he's almost finished his first correspondence unit of University studies (Oz history), he began Russian language school earlier this year and has joined a lapidary club, whilst still playing cricket, tennis, lawn bowls and attending the nature club meetings and excursions.
    There is no way he could have done even one of these activities while in mainstream school with all the stresses and anxiety.

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  10. Jayne exactly you've done what as a mother you knew was best for your boy. As I said to Tammy a one size fits all can't be applied. Each child is different and has different needs. You haven't isolated your son you've shown him the world. Tammy has done the same. I've done it with Michelle. She is in a mainstream school but next year things may be different. High school is a vastly different environment from Primary level. Awesome of you to share thanks heaps.

    Take care
    Liz

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  11. Another kiwi here Liz living with 2 sons and a husband on the Spectrum.

    We homeschool and have had very little 'help' because there hasn't been any. Not enough funding.

    I am tired of the cure seekers and those who want to identify things that cause autism so we can eradiacate it. I don't want it eradicated, it is a gift. My boys know their brains are wired differently and that it how God made them and we celebrate it. They also know that it is not an excuse for bad behaviour, but means sometimes they need to try harder or do manage things a little differently to other kids.

    My MIL handled my husband by instinct, as did I with the boys until diagnosis. Then I got a little sidetracked with it all.

    We were told our older son would not be able to function independantly as an adult. He is 10 and doing very nicely thank you very much, and exceeding 'their' expectations.

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  12. A very touching and true post Liz. I can understand how hard it must be to cope with ASD but I'm so glad that you've coped with it so well. And I think you are quite right in your approach towards it. It's best to treat the child like any other normal person while at the same time giving her all your love and attention.

    Sonny is so cute and hope he is settling nicely with Diamond, Emerald and Sasquatch. Purrs and lots of hugs to all of you at the farm :)

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  13. Oh this is just making my day

    widdleshamrock - Thank you for sharing! You know what it's like to be told sorry your child will never achieve or sorry no funding your child is doing too well. Homeschooling too is a brilliant alternative. Jayne said it all I think on her sons progress. Yes ASD is a gift not a curse. There is no cure and should there be one? For some of my family they were seriously thinking of looking at genetic selected embryos to avoid passing on the Autism Gene. Me - I love my kids all three girls have been affected in some way but my youngest Michelle is diagnosed along with her Mum here.LOL Pat yourself on the back you're a fantastic Mum for loving your family so much you'd stick to that committment.

    Omer - Oh thank you! I have a very happy family. Sometimes we have challenges but these days they seem to be less and less. A story I'll have to share sometime. Not easy reading a diagnosis and wondering just where to go next.

    Goggie is getting there. He loves Sasquatch but has been bad today with Emerald. He tried to bite her so he was put outside. He'll learn. Kitteh house not goggie house.LOL. Nice little pup but he has a lot to learn

    Purrs,goggie hugs and love to you
    Liz

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  14. Liz - that is the best piece I have ever read about Asperger's and Autism. It should be published and be compulsory reading for any parent faced with the situation. For years I taught autistic children with varying levels of autism and I have seen so many parents absolutely distraught when there has been a diagnosis.
    Well done to you for coming out in the open and speaking of what it is like. I am feeling totally uplifted after reading your post. Thank you for it.

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  15. Hello Weaver

    Thank you for your encouragement.What has heartened me about this post is the amazing sharing we've all had. I'm certainly not ashamed of having ASD and hearing from proud parents,grandma's,and wonderful Doctors like Omer has been incredible.I've been meaning to do this for a while but never got around to it. Well I don't mind sharing. I had my struggles believe me with ASD and at times it could be very disheartening.I'll be sharing that in the next post I write from the Land of Gonzo.

    Love and hugs to you
    Liz

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  16. My 6-year-old son Reuben is high functioning autistic. Your perspectives on autism seem to me right on the nail. Reuben benefits enormously from the company of his non-autistic peers and the box-organising process is well served by his being in a 'normal' school environment.

    My latest post touches on Reuben's autism.

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  17. Hello Dick

    I went and visited your blog and felt so heartened by your willingness to show your dear little boy the world. You'll find he will do brilliantly in everything. He will surprise you with things you didn't know he could do and each thing he achieves will be a triumph. He will have a fantastic future because his family loves him.

    All the best
    Liz

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