Thursday, 26 March 2015

World Autism Awareness Day is coming around again. Why are you still not listening?

When I sat down to write this year's blog for World Autism Awareness Day, the first thing I did was read last year's, which was about asking the teaching community for better understanding and support.

I could write the same bloody article again today, word for word, so little has changed in the past year.

I won't do that, because I want people to keep reading this year's post.

But from now on I'm not going to be diplomatic any more.

I've spent years trying to understand the point of view of people who refuse to consider mine. I've listened many times to the lecture on how these things take time. And I've discussed at great length and on multiple occasions my own personal responsibilities, and the efforts that my daughter needs to make in order to fit in.

But really, now, I've had enough.

I have had ENOUGH.

Enough of talking to people who aren't listening (even though some of them fake it extremely well.)

Enough of asking for the same things, over and over again.

Enough of being told it's my fault, or her fault, or anyone's fault but theirs.

Talking to these people about Grace and other people with autism, and the support we would really like to have, please, is like speaking into a vacuum and watching my words disappear with a silent 'pop' in an airless, unfriendly atmosphere. It's like yelling for hours into a long dark well without ever hearing the responding echo bounce back to me from the bottom of it.

It's driving me crazy. I don't want to do it any more.

So please, you lot, will you just, please LISTEN.

If I was asking for special consideration I might be able to keep my temper a little better. If I, and all those other parents engaged in these eye-wateringly tedious negotiations, were in fact asking for something to which we knew we had no right, we could maybe just about cope with the daily duel.

But we're not, you see. Our children have the same right to an education as everyone else's.

Our children have the right to be included in your lessons and to be supported and taught, just as every other child does. Our children have the right to expect flexibility and kindness and empathy (even while being constantly criticised by rigid, blinkered "professionals" for being incapable of expressing these attributes themselves.)

Why do our children have this right? Because, um, it's the law.

But if that's not reason enough for you, try this:

Our children are ASSETS ( - are you listening yet?) Our society advances when we embrace the non-conformists and the free thinkers and the eccentrics. Our children have a lot to give. They can learn. Help them to find a way to do this that does not insist they first squeeze themselves to fit a template of 'normal' that you've drawn up to your own specifications and which can only result in their failure.

Stop punishing our children if they become too anxious to cope with your demands. Giving an autistic child detention is not going to magically make them understand how important it is to do what you say. It's only going to make them even more anxious, and likely to get it wrong, again.

Stop telling us our children are 'a handful' or 'difficult' or 'playing up'.

Stop telling us we need parenting classes, when you've not had any autism training or failed to understand the training you undertook. (It's not hard to find autism training, by the way. Here's some, right here, from the National Autistic Society which by the way has pages and pages of the stuff.)

And - especially for the attendance officers this one - stop sending us letters about our children's school attendance. Do you seriously think this is news to us? Don't you think we're killing ourselves every day already to get them there? If you want to know what's going on, talk to your colleagues  - yes those ones on the other side of the staff room, say perhaps the SENCo, or the head of year, or the form teacher, or the teaching assistant - before you send us a postal missive demanding that we explain ourselves to you. We've already done that, to every other bloody member of staff.

I know none of this is terribly polite. I know that I'll get told off for being unhelpful. So fine, tell me off. I'm used to it, and so is my daughter. It makes us feel crappy, but we're used to that too.

But this time, when you've finished telling us off, try thinking about what we're asking for. And consider this too: wouldn't you rather just be getting on with your job instead of arguing with us? We know you're all overworked and underpaid. We know you don't want to spend all this extra time and effort on paperwork and phone calls and this-that-and-the-other. We know you resent playing social worker when you're actually trained to be a teacher.

So fine, teach. It's what you're good at, right?

We'll stick to what we're really, really good at, which is parenting our autistic children.

Then you can stick to what you're good at, which is teaching ALL of the children in front of you.

A tip: our job involves tearing up the rule book and adapting our job to best fit the needs of the children we have. It's an approach you might like to consider in yours.



World Autism Awareness Week starts on Friday, November 27 and runs till Thursday, April 2, which is World Autism Awareness Day, 2015. For more information on ways you can participate, click here.

I will be running the New York Marathon in November 2015 in support of my daughter and Britain's National Autistic Society, which provides information, support and pioneering services for people with autism, and campaigns for a better world for them. If you would like to cheer me on, please click here.

14 comments:

  1. I get what you mean totally as the mum of an Aspies 12 year old girl also. She moved to senior school and seemed to hit the ground running. She loved the school and everything about it and it suited her totally. Then, enter the hormonal maelstrom of puberty and now all bets are off. Anxiety has hit her like a ton of bricks, coupled with panic attacks sparked by certain types of activities (such as drama) which she hates. Although I know the school are trying to be supportive and the SENCO is very good, it is the attitude of ALL staff that needs to change. There are some authoritarian "shouty" (her word not mine) teachers who think that Alex Ferguson's hairdryer approach is a magical panacea for ASD kids and it will magically eradicate anxiety. They don't get that she has become extremely good at masking (being ignored and ostracised for her entire primary school life teaches a girl to be invisible). We are now constantly recalibrating our entire family life to manager her mood and the hormonal upheavals of puberty, which has a knock on effect on our other children. It is exhausting as you no doubt know. Life would be made a bit simpler for her in school if teachers and staff could remember to THINK before speaking, as some kids take things literally and DONT get non verbal communication.
    My daughter is incredible. She is gifted (high IQ), funny, caring and amazingly (sometimes overly) empathic. She has difficulty in handling NT communication and working out the unwritten rules of the NT world.
    We are lucky that she achieved scholarships to a very good independent school so the draconian approach to attendance doesn't apply a rigourously, however it is so hard to feel like a horrible parent when you have to compel her to go in when she has had a horrible nights sleep through anxiety and she is exhausted, or when she is in agony due to her PMT and her hypersensitivity to pain/neurological stimuli. Whatever happened to a child centred approach? There just doesn't seem to be one, just a lot of talk about the theory....

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  2. Hello paddler, and thank you for your comments. They chime with so very many that I have heard from other parents of Aspie girls aged 12 and upwards. It baffles me that so many schools have good SENCos and solid inclusivity and autism training policies yet don't understand that the expertise needs to be part of a joined-up approach and shared around if it is not to be cancelled out by the actions of other teachers or school officers who are clueless! Your daughter sounds wonderful. Sending love and encouragement to you both.

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  3. I had to remove my daughter from her primary school when she was sexually assaulted and the school categorised it as 'play' and her as special needs for speaking out about it. My friend, who trained as a teacher, left when they started calling children 'service users' or 'customers'. We are in very very very strange times where caring and nurturing professions are taking on business speak to become like a business which makes people into products. Your child and my child are defective products in their mind.

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  4. SPECIAL THANKS TO DR WILLIAMS FOR THE AUTISM CURED HE
    RENDER TO MY SON.
    I'm giving a testimony about Dr. WILLIAMS for the great deed he have done for my family, he has
    the natural cure to autism, he cured my son from autism ,
    though I went through different website I saw a testimonies about this
    Dr Williams, I was like: 'Dr Williams have the autism cure why are
    people still suffering from it?' I thought of it, then I contact Dr Williams, I didn't believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about my son, then I sent them to him, he prepared the (CURE) and sent it to me through Courier Service he gave my details to the Courier Office, they told me that 1-3 days I will receive the package and my son took the medicine as prescribed by Dr Williams and i took my son for check-up 1 week after finishing the medicine, then the autism was not there anymore, if you are suffering from autism you can also contact him on his via email address: drwilliams098675@gmail.com for his help.

    ReplyDelete
  5. Just wanted to say a huge thank you to Dr Williams for everything he have done in my life. I have been in tears for so many years now, having found that my only son is suffering from autism, lesion after some years of being under extreme stress., . I spent 24 hours freaking out and finally calmed down after reading some testimony on here about Dr Williams herbal medicine to autism. The moment came and I mumbled out to my husband about Dr Williams product (with a few tears) and he was AMAZE – . He was just worried about our son been free from this disorder that was how will order for Dr Williams product on line , after my son finish taking Dr Williams medicine for just within a period of one month. Will went to the doc together who confirmed that he was autism free.
    Thank you again for being upfront, truthful and taking this pain away from my family for more information about his product you can email him on drwilliams098675@gmail.com i hope you can also help other terrified people in a similar situation.

    ReplyDelete
  6. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from autism for more than 2 years which we started experiencing in her when she turned 1 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of sensitivity to sound . She usually tells me she haves poor eyes contact. This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have autism, do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there

    ReplyDelete
  7. WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
    my son have been a patient of autism . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my son symptoms. One day when going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from autism,quickly i contacted him and he prepared a herbal medication for my son which i received and he used it as instructed by dr williams. After few weeks the improvement were very visible. the speech delay and the poor eye contact stopped, I would recommend this to all my friends,families,around the globe suffering from autism.you can contact him through his email on drwilliams098675@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN ADMIN FOR SUCH AN INFORMATIVE BLOG.

    ReplyDelete
  8. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from autism for more than 2 years which we started experiencing in her when she turned 1 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of sensitivity to sound . She usually tells me she haves poor eyes contact. This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have autism, do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there

    ReplyDelete
  9. HOW I WAS CURED TOTALLY FROM AUTISM
    I had my first attack of (AUTISM) when I was a kid, I wasn't diagnosed until 27 years later when I was totally experiencing speech delay. It was so terrifying that I began dropping things and losing sensitivity to sounds, having severe fatigue and muscle weakness. A horrible poor eyes contact began. I sometimes can't walk straight and fall onto walls and I get leaning disability, the English medications i used proved abortive. i was so frustrated that i had to contact My neurologist,he told me about a new RRMS (relapsing-remitting MS) drug which was only in its trial stage, CAMPATH. I started the chemo-type treatment and some prescribed drugs like: RISPERDAL, EFFEXOR XR, GEODON and MEMANTINE. which resulted in 1st seizure of my life, thereby adding more salt to my injury. As a result to proffer solution to my problems, i started going online in search for a cure, i came across a testimony of a woman who got her son cure through HERBAL MEDICATION, at first, i doubted because of the misconception that autism can not be cured. But i later contacted the Doctor through the email provided, and I used his Herbal product, after 1 month of use, I noticed tremendous improvement in my health, 5 months after, I can proudly say, I've been totally cured by Dr.williams Herbal Medication from AUTISM..., If you have the same health issue, you may contact him for a total change of story, Via: drwilliams098675@gmail.com . I believe your predicament will be a thing of the past just like mine.

    ReplyDelete
  10. As a sign of gratitude for how my son was saved from autism, i decided to reach out to those still suffering from this.
    My son suffered autism in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have difficulty with communication,and he always complain of poor eye contact . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who had the cure to autism . I never imagined autism has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life.autism has a cure and is a herbal cure,you contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

    ReplyDelete
  11. I am Sophie from Canada, I once suffered from a terrible and Chronic autism ,since i was bone , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 31 years, this was really a terrible ailment ,on thin one day that i was going through the internet,and i came across a post of Mrs Kate on how his son was been cured from autism through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it 1 months and two weeks as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for help.

    ReplyDelete

  12. I am bold enough among many others to state that there is now a potent cure to this sickness but many are unaware of it. I discovered that I was infected with the virus 3 months ago, after a medical check-up. My doctor told me and I was shocked, confused and felt like my world has crumbled. I was dying slowly due to the announcement of my medical practitioner but he assured me that I could leave a normal life if I took my medications (as there was no medically known cure to Herpes). I went from churches to churches but soon found that my case needed urgent attention as I was growing lean due to fear of dying anytime soon. In a bid to look for a lasting solution to my predicament, I sought for solutions from the herbal world. I went online and searched for every powerful trado-medical practitioner that I could severe, cos I heard that the African Herbs had a cure to the Herpes syndrome. It was after a little time searching the web that I came across one Dr Itua(A powerful African Herbal Doctor), who offered to help me at a monetary fee. I had to comply as this was my final bus-stop to receiving a perfect healing. My last resolve was to take my life by myself, should this plan fail. At last it worked out well. He gave me some steps to follow and I meticulously carried out all his instructions. Last month, to be precise, I went back to the hospital to conduct another test and to my amazement, the results showed that negative,Dr Itua Can As Well Cure The Following Desease…Cancer,Hiv,Herpes,Shingles, Hepatitis B,Liver Inflammatory,Diabetis,Fribroid,Parkinson's,Alzheimer’s disease,Bechet’s disease,Crohn’s disease
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    ReplyDelete
  13. DR WILLIAMS HERBAL CURE TO AUTISM.
    I was always praying to have a testimony when ever i saw people sharing their own testimonies which really took me years but today i am the happiest father on earth.My son suffered autism for 5 years, after taken different kind of western medication without been cured.All these years my son have been abnormal but today he is been cured.and you do not know how i feel having my son back to normal because it was not really easy for me having just two son and one been abnormal.I took time to search the internet which i found a lot of people thanking Dr. Williams concerning the same problem and i discussed it with my wife and she agreed will should give a try so we order his product which my son took for 28 days and he is very much okay now.I will advise you to stop wasting time on all these western medicine because they only work for some times and the problem bounce back again.Contact Dr.at drwilliams098675@gmail.com for advice and for his product and be the next to give your testimony.

    ReplyDelete
  14. As a sign of gratitude on how my son was saved from autism, i decided to reach out to those still suffering from this.
    My son suffered autism in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have difficulty with communication,and he always complain of poor eye contact  . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who have the cure to autism . I never imagined autism  has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life.autism  has a cure and is a herbal cure,you can contact the doctor for more info on drwilliams098675@gmail.com on how to get this medication, Thanks.

    ReplyDelete