annakennedy23

Our two boys have a form of Autism and I was immediately thinking what did I do wrong?

annakennedy23

This Was The One Thing I Knew I Could Do. So I Did It.

An Interview with Anna Kennedy OBE


Anna Kennedy OBE has two children (Patrick and Angelo) who were diagnosed with Asperger’s syndrome and autism. Since their diagnosis she has set up schools and colleges to provide an improved education and other facilities for special children affected by Asperger syndrome and autism. The first school she set up has over 250 pupils and is the biggest school in the country for children with autism. After setting up this school, Anna created a vocational college for adults where sufferers of autism could come and learn. She was awarded an OBE Award by Queen Elizabeth II at Buckingham Palace in 2012 for her services and her website AnnaKennedyOnline.com provides much needed support to countless families.

BEFORE YOUR CHILDREN WERE DIAGNOSED WITH AUTISM AND ASPERGER’S SYNDROME DID YOU HAVE MUCH OF AN AWARENESS OF THESE CONDITIONS?

To be honest not really, apart from the film Rain Man which I had watched when I was younger. That was more or less my knowledge on the condition.

THAT’S PROBABLY TRUE OF A LOT OF PEOPLE. AND I GUESS IT MUST BE FRUSTRATING BECAUSE IT DEALS WITH IT IN A VERY HOLLYWOOD WAY – WITH DUSTIN HOFFMAN AS THIS ABSOLUTE GENIUS.

Yes it is, and it’s quite sad really because not everyone is like the Dustin Hoffman character and they’re not a genius, and they don’t always get the happy ending.

SO HOW OLD WERE YOUR BOYS WHEN THEY WERE DIAGNOSED WITH AUTISM AND ASPERGER’S SYNDROME?

Well, Patrick was born 10 weeks premature – he was only two pounds when he was born.

WOW. I HAD NO IDEA.

Yes, I had Pre-Eclampsia Toxaemia. It meant he had a lot of difficulties for the first ten weeks of his life. He picked up this, that, and the other and at one point things were so desperate that he was even given the last rights. He then had a blood transfusion and that seemed to be the turning point in Patrick’s life. We then brought him home, however for about three years he was in and out of hospital as he kept picking up bad chest infections and various other illnesses like septicaemia, rickets, whooping cough and glue ear.

THAT SOUNDS DESPERATE.

Yes it was very difficult, but he was a real battler. And he then went to nursery but we found that very, very difficult as I was with him all the time and he didn’t want me to leave him.  Obviously because of the difficulties he had he seemed to warm to adults more than children of his own age. He didn’t play with children so instead he would walk around the playground edge by himself.  If he did play with a child it would be alongside them, almost in parallel, than actually engaging with them.

We were still going to see the consultant paediatrician because of all his problems in his earlier life. Then he started school but was a very anxious young lad; still finding it very difficult to make friends, and then started to get bullied. Every single morning, he would just kick out and scream when I took him to school.  We even had a few car accidents from him grabbing the steering wheel.

THAT SOUNDS DESPERATE. SO WERE YOUR CHILDREN BADLY BULLIED?

Yes, Patrick certainly did. He suffered name calling at school. He would come home and ask what “bird brain” and “cuckoo brain” meant. He always used to ask me if he was stupid. It was so sad. Patrick tried to make friends as a child and one day stroked another child’s face at school as this was his way of saying I want to be friends but he was just pushed away so he gave up. He would then retreat and spend lunchtimes walking around the edge of the playground. All of this bullying knocked his self confidence hence why he painted pictures of himself in his school uniform with an angry face and steam coming out of his ears.
My other child Angelo does not have any verbal skills so is unable to share with us if he has been bullied. We did go to Legoland three years ago when Angelo was 17. He has very poor spatial awareness and so can bump into people. He accidentally bumped into a guy walking around and the man looked at Angelo waiting for an apology which obviously didn’t happen as Angelo doesn’t possess speech. I went to apologise and the man squared up to Angelo in an aggressive manner. I quickly slotted myself between them so as to protect Angelo and shouted “my son is autistic!” He quickly backed off and apologised but this is all too common in my experience. People often jump to the wrong conclusions and are often unnecessarily aggressive.

“All of this bullying knocked his self confidence hence why he painted pictures of himself in his school uniform with an angry face and steam coming out of his ears.”

 

OH MY WORD – THAT’S SO SAD. IF WE REWIND, THINGS SOUNDED VERY TESTING WITH PATRICK?

Yes, it was very testing. I’d just had my second child Angelo (there was a 3 year gap between them). And so I was struggling with Angelo while also looking after Patrick who basically spent a lot of his time in the corridors at school rather than actually going into the classroom for the reasons I said earlier. He would start saying things like there was a big mouth that swallowed him up when he went into school (which were the school hall doors). He became very angry and started drawing angry pictures even making cornflake boxes and pencils as bombs to blow up the school. So yes, he was a very anxious young man. But on the other hand we picked up how interested he was in how words were made up.  He used to read dictionaries and pictionaries and test me on them and made sure I gave him exactly the same answer as the day before, and the day before that, and the day before that.  He had a really fantastic memory and used to love to quiz us. It is like if you ask someone a question, you will always get a slightly different response from each person– the words will never be in the same formation or order. That is what caused Patrick the anxiety because we wouldn’t be saying things in exactly the same way. So he would say, “two weeks ago you told me this, and now you’re telling me this.” [Laughs] So it felt like you were always walking on eggshells, bless him.

I BET!

He had a very curious little mind but things come to a head in the end where I remember him wrapping his legs around his buggy as I went into school as he was shouting and screaming with everyone looking at me. I used to really hate those looks of pity that I used to get from the public.  And I literally could not get him through the school gates because he buried his head against a brick wall and sobbed—memories I will never forget like when I asked one of the mums if she could go and get the head teacher to come out who was also a mum of nine.

NINE!?

[Laughs] Yep! Irish lady, very nice – Mrs. Docherty was her name. She came out and basically asked what are we doing to this young man? So we decided we would have a meeting and bring in all the professionals. As a family, we were already seeing a psychotherapist because of Patrick’s anger and his sleepwalking but in this meeting the psychotherapist couldn’t actually make it so she sent over a report that we would all discuss. In fact, just before that meeting Angelo had been diagnosed with autism at 3 years old so I was also trying to get my head round that.  So I am in this room, with all of these people and the physiotherapist’s report was handed out to us all.  I will always remember the first sentence for as long as I live. It read “Patrick Kennedy was diagnosed with Asperger’s syndrome in 1994.” We were now in 1997. The person who was chairing the meeting said “Mrs Kennedy, why didn’t you tell us Patrick had Asperger’s?” And I replied, “I have only just found out now…”

SO HOW WAS THERE A THREE-YEAR DELAY? THAT’S SCANDALOUS.

The child paediatrician from the hospital hadn’t shared that information with us.

THAT’S SO, SO AWFUL.

So I started looking through all the reports we had been given in case I had missed it from my end but there was no mention of it anywhere.

THAT’S RIDICULOUS.

I know. To be honest with you I couldn’t concentrate on the rest of that meeting as I felt like a big explosion had gone off in my head.

I BET. I BET YOUR WORLD HAD JUST COLLAPSED.

Yeah, I was sitting there thinking that our two boys have a form of autism and was immediately thinking what did I do wrong? I was looking for someone to blame. And then I went through a real grieving process because even though they are the same boys that you always had they’re now somehow different and have a label.

SO I AM NOT SURE THE BEST WAY TO ASK THIS BUT WAS IT ALMOST A ‘RELIEF’ THAT YOU NOW KNEW WHAT YOU WERE DEALING WITH IN REGARDS TO PATRICK AND YOU AT LEAST HAD AN EXPLANATION TO WHY HE WAS ANGRY AND DIDN’T PLAY WITH CHILDREN?

It wasn’t a relief straight away. I don’t think it’s ever a relief to be honest. Because I always remembered “Autism” – I didn’t like the sound of the word, I hated the word.  Then I started reading all about it and every book I read said how important it was for early intervention. I was getting really frustrated with all this because when Angelo was about to start school at age 5 they said they couldn’t meet his needs and there wasn’t a place for him. So then I had two boys that were out of school and they would get just a few hours of tuition that was provided by the local authorities. One lady that started working with Angelo started crying after the second day because she just didn’t know what to do.

SO AS A MUM, YOU’VE DONE EVERYTHING YOU’VE MEANT TO DO, BUT YOU’VE HAD AN INCREDIBLY TRAUMATIC 7-8 YEARS. HOW DO YOU DEAL WITH THAT? OR DID YOU NOT?

Well at first I felt very lonely as I was living in London with my husband Sean where all my family lived in the north-east. I didn’t really have anyone to talk to and no one I knew had been in a similar situation. I was feeling frustrated and was ever so tired because Patrick and Angelo were incredibly poor sleepers, and were quite demanding.  For example, they would never want to change their clothes and Angelo would want to wear seven pairs of socks! [Laughs] Then Angelo lost all his language – he had it until he was about two years old but then lost the whole lot. He would just sit there staring and fixated at the patterns on the wall. So yeah, it was lonely and tough – I would go to work from 6am-11am and then my husband would go to work, and I tried to teach dance as well. I was just shattered, permanently shattered.

IT JUST SOUNDS SO, SO TOUGH.

Yes but I met with another parent who shared similar things as the boys. Her situation was a bit different but similar enough that we could be a support to each other. We started talking and found out there were other parents who were in a similar situation to us so we decided to setup a support group. It started in my lounge and it grew and grew until we ended up in a church hall and had 275 families coming along to this support group where all of them had autism in their lives – be it as adults or children. The adults’ stories could be a bit scary as you were at the start of your autism journey and you had seen how bad things had been for some of them, and that really did scare you at times.  I always remembered the knackered faces of the parents, and felt really sorry for them.

SO WAS IT A BIG SUPPORT TO HAVE ALL OF THESE PEOPLE?

Yes absolutely. It was great to be able to share stories, and not be criticised by people because sometimes autism comes across as children being naughty so some parents just think the child needs a good smack.

DO YOU GET VERY ANNOYED WITH THAT TYPE OF ATTITUDE?

Yes definitely. That’s still going on as well. Even though awareness of autism is so, so much better, it still goes on. It depends where you live and it’s very much a postcode lottery in terms of schools, support services etc. So we had the support group, and after three years of teaching my sons in my garage I got fed up and thought this is no way to live. So we decided we wanted to setup our own school. So we started chatting to this chap whose son had been misdiagnosed with schizophrenia and he told us of a school that was going to be knocked down and converted to flats. It was actually around the corner from where I lived. So I climbed over the fence.

[LAUGHS]

I had a look through the school and it was badly smashed up, as it had been left empty for about two years so it was in bad shape. However I spoke to a lady who was head of Client Services at the time and was dealing with my case, and she said she would investigate it for me. We put a proposal together and took it to the council.  The decision was unanimous and they would lease us the building.  They gave us a much lower rent in the first couple of years because it needed a new roof, and a new everything to be honest.

AND WERE THE 250-SUPPORT GROUP FAMILIES INSTRUMENTAL BEHIND YOU GETTING THE SCHOOL AND THEN RUNNING THE SCHOOL?

They actually thought we were daft. They thought we were running before we could walk. So there was only a small group of us but I was the driving force behind it all as I knew how important it was. I went to the probation service and got them to be involved every weekend with painting etc. I went to the Princes Trust who also helped with the sensory garden and more. It was supposed to be a three-year development plan but we managed to get the whole thing done in 18 months.  But after 9 months we opened the school to 19 pupils and my two boys were the last two to walk in.

AND HOW DID THAT MAKE YOU FEEL? YOU MUST HAVE BEEN ENORMOUSLY PROUD?

[Pause] It was a bit scary, I knew the inspector from Ofsted was coming in a few months time and could close us down if we were not right, and not meeting targets. So it was a big learning curve, for everyone. I had to advertise for teachers and a headteacher and it all started to fall together. We had nine applicants – some were better than others! [Laughs]. One lady turned up, who was 90 odd years old and was wearing a very old bobbly hat, a kilt and a pair of trainers so she wasn’t quite right! But on the very last day of applications we got a great candidate who had worked for twenty years with kids with autism and she was great. So she came on board, so from 19 children to 15 years down the line (we celebrated our 15th anniversary the other week)…

CONGRATULATIONS!

We now have 175 kids attend the school that travel in from 17 different local authorities making us the largest school for autism in the UK.

“We now have 175 kids attend the school that travel in from 17 different local authorities making us the largest school for Autism in the UK.”

THAT IS SUCH AN AMAZING ACHIEVEMENT. YOU OUGHT TO BE VERY PROUD. WHAT HAPPENS ONCE YOUR CHILDREN LEFT THIS SCHOOL?

Angelo would always need one to one support, as his autism was very profound. He’s got sensory processing difficulties and has epilepsy so I was very concerned where he would go when he was 13 years old. As an adult I think people think you are just magically cured of autism and your condition. We looked and looked but couldn’t find anywhere appropriate for him to go. So we decided to set up a vocational college and now Angelo has just started the college last year and there are 45 adults that attend this college, from 13 different local authorities aged from 16 – 53. They learn about the business world, distance learning and some do University Degrees – our support is person centred. The college is split into two sites; one for the profound cases of autism which cares for 10 adults, including Angelo, and the other site which is a vocational college for 35 adults.

YOU’VE CREATED A SCHOOL AND A COLLEGE – I’M RARELY LOST FOR WORDS BUT WHAT YOU HAVE DONE REALLY IS VERY SPECIAL.

Thank you. When you are put into this sort of situation I think you find you react in all sorts of different ways. I wanted the best for my children, as any mother would, and so this was the one thing I knew I could do. So I did it. I also have such a fantastic team behind me both at the school and college and at the charity I call them my A Team!

THEY SOUND GREAT! SO HOW OLD ARE PATRICK AND ANGELO NOW?

Patrick is 24 and he’s just started his first ever full time job!

OH CONGRATULATIONS, THAT’S GREAT NEWS.

Thank you! He had a part time job for three years to teach him about the world of work and then he decided he wanted to go into the world of security so did his badges and has just started. His first day was yesterday – he was a bit anxious, but he just needs a bit of reassurance.

WERE YOU CONFIDENT THIS DAY WOULD ALWAYS COME?

I always felt Patrick would get there. I knew it would take him a little longer because of his anxiety, and his low self-esteem but he doesn’t realise how clever he is. He really is bright. To be honest with you [Pause] he is so passionate about palaeontology that he should do a degree in that and then do the thing he loves. But for him that’s just an interest, he doesn’t get it could one day be a job. But you never know and he may realise one day. So he’s just started – five of them all started together. He already has low self-confidence because he’s convinced they won’t like him and that he won’t be good enough so you just have to give him that constant reassurance. So that’s what I do. He looked very smart today and I was very proud of him. To think he used to be two pounds and is now this muscular, 6 foot 2, security man. Yes I was a very proud mom.

IT’S INCREDIBLE AND HE WENT THROUGH THE SCHOOL YOU SET UP WHICH HAS ENABLED HIM TO GET INTO THIS POSITION.

Yes – it’s great. I have to keep pushing him to do things, but he’s doing really great and I am enormously proud of him.

AND WHAT ABOUT ANGELO, WHAT’S HE DOING?

Angelo is at the college and is really enjoying it. He’s had a very tough 4-5 days. [Pause]. Angelo has really profound autism and I wish I could just find the key to unlock it all because he’s definitely got it in there. He has very little speech and so communication is almost impossible but on occasion he will make a gesture, or a sound. And those moments are really precious to me. You can’t have a conversation with him but he’s amazing on the iPad – it’s such a great tool for people with autism. The school is full of them as it really does make a huge difference. But he still has lots of difficulties.

WHAT ARE SOME OF HIS DIFFICULTIES?

He has major sensory issues which I would probably say pulls him back a lot – sound, light etc. So whenever I go to different places I try and see it through his eyes. Even when the weather changes it brings on all his eczema in his lips, his chin gets sore.  He is also a very poor sleeper.  They’ve both got their challenges but they have also challenged me and I have done things that I never thought I would be able to do. I mean I used to have low self-confidence, as I had a strict Italian mum and dad, but the boys have helped me enormously with my self-esteem and pushed me to the limit.

I WANTED TO TRY AND ASK A QUESTION BUT I CAN’T WORK OUT THE BEST WAY TO ASK IT.

No go on.

SO WHAT I WANT TO KNOW IS OBVIOUSLY YOU’VE TRANSFORMED COUNTLESS CHILDREN’S LIVES BY CREATING THE SCHOOL AND THEN THE COLLEGE. SO IS THERE ANY PART OF YOU THAT THINKS THE DIAGNOSIS OF AUTISM AND ASPERGER’S FOR YOUR SONS CAN EVER BE IN ANYWAY LOOKED AT POSITIVELY BECAUSE OF ALL THE GREATER GOOD IT HAS CAUSED? IF THEY HADN’T HAD THEIR CONDITIONS THEN COUNTLESS CHILDREN AND ADULTS LIVES, WHO HAVE AUTISM, WOULD BE SO MUCH POORER.

Yeah I understand that. It’s a tough one because obviously my priority is my children and I still worry greatly about them and what happens when I’m not here to look after them. I think Patrick will be ok but I do really worry about Angelo and that’s because he just can’t communicate his feelings and you hear these horror stories of abuse and stuff and he wouldn’t be able to tell anyone if that had happened to him. So the future scares me and obviously if they didn’t have autism then I would be much more at peace knowing my children would be ok. I recognise I’ve done some positive things, and helped some people, but ultimately your priority is always your children and wanting the best for them.

SO IS THIS YOUR BIGGEST FEAR? WHAT HAPPENS TO THEM WHEN YOU’VE GONE?

Oh definitely. I dread it. I am trying to put things into place that will help them and I hope Patrick will look after Angelo a bit when I am not here, and I am sure he will. But about ten years ago I had a miscarriage and just before that happened I was in my head thinking, ‘oh I hope it’s a girl, I hope it’s a girl,’ as girls are a lot less likely to suffer with autism when you have two boys who have already got it. And I was thinking, ‘oh she could keep an eye on her brothers.’ So it was very selfish of me.

NOT AT ALL, I CAN COMPLETELY UNDERSTAND THAT. IS AUTISM SOMETHING THAT BECOMES EASIER THE MORE YOU UNDERSTAND IT?

Yes and no. If you put the right infrastructure around a boy or a girl from a young age then it can change their lives significantly. And I’ve seen that with the children that come into the school. I’ve also set up a charity called Anna Kennedy Online and so many positive things have come out of that. We’re all aware of the doom and gloom that surrounds autism but there are positive things as well. For example the shows we put on – like the fashion shows – and where we pamper mums and dads. And then our kids got a head to toe makeover from this great American makeup artist and then they walked down the runway feeling great about themselves; it was just so good. We also do ‘Autism’s Got Talent’ and we are in our 4th year and this, along with the school, is the best thing I’ve ever done. You have to see it to believe it.  It is brilliant where 20 kids and adults who are singers, actors, dancers, written books, all appear and star! We’ve almost become the Simon Cowell of the autism world! [Laughs] It’s a very autism friendly audience and they see other kids and adults with autism appearing on stage and think, ‘oh wow I can do that!’ Also we get parents tell us that sometimes they get told not to send their child with autism into school that day as “he will disrupt the pantomime” or whatever it is but with us we’re so autism friendly. So we have a 650 seated theatre and people can come and go as they please. At the start it’s all very noisy but when they realise they’re not being told off for the noise they actually quieten right down. It goes eerily quiet.

THAT’S BRILLIANT. YOU OUGHT TO BE VERY PROUD OF THAT. IT’S PROBABLY SOMETHING THAT COULD BE APPLIED TO OTHER ILLNESSES AND DISEASES – I IMAGINE THE KIDS MUST LOVE IT?

Definitely!

JUST A FINAL COUPLE OF QUESTIONS – I SAW YOU RECENTLY BECAME AN OBE, CONGRATULATIONS.

Thank you.

SPEAKING WITH YOU DURING THIS HOUR I WONDER HOW AWARDS SIT WITH YOU. I IMAGINE YOU’RE THE TYPE OF PERSON WHO ISN’T DOING ALL OF THIS FOR AWARDS?

You know what it is; they’re good to get and thank you very much but I use them as a tool [Laughs]. So rather than bang on the door, the keys are given to me and I can then open them myself. I am hoping that with the OBE it will enable me to fulfil a bit of dream of mine which is to have lots of sister schools, like Hillingdon Manor School and the second school we created – Baston House School. Baston is based in Kent and was born 4 years ago and is growing every year. But the OBE day was was a really weird day – getting to meet the Queen! I took my mum, and my mother in law with us – they support everything I do. So we go along and I meet Kate Winslet!

YOU MET KATE WINSLET?

Yeah she came to find me actually as she had set up a charity for autism because one of her daughter’s friends is autistic and she said she had heard about the work I had done. And then I met the Queen [Laughs]. And she said to me “how are the boys? And I understand you set up a school for people with autism?”… and she’s chatting away and then six hours later I am at home taking the washing out and unblocking the toilet and just thinking to myself what a weird day! [Laughs] From the Queen and Kate Winslet to unblocking the toilet.

[LAUGHS] I BET KATE WINSLET AND THE QUEEN DIDN’T FINISH THEIR DAY BY UNBLOCKING THEIR TOILETS!

[Laughs] Can you imagine!

YOUR WEBSITE PROVIDES AMAZING SUPPORT, AND YOU’VE GOT 50,000 TWITTER FOLLOWERS. ARE THERE TIMES WHERE YOU THINK, ‘YOU KNOW WHAT I JUST NEED TIME WITH ME AND MY FAMILY TODAY, I AM DONE WITH HELPING ANYONE ELSE FOR TODAY’ – DO YOU EVER GET SICK AND TIRED OF IT ALL?

I don’t. 

YOU DON’T?

Nope not at all. When I lose the enthusiasm, the drive, the passion then I know it’s time to stop. But to be honest with you I’ve still got lots of ideas about new things I want to do.

SO DOES IT HELP KEEP YOU GOING?

Absolutely. I get to speak with other families who are in a similar situation to me and so I can support them, and they can support me.

BRILLIANT. FINALLY, WE WANT TO KNOW HOW OUR READERS CAN GET INVOLVED AND HELP?

Everyone thinks our charity has lots of money but we really don’t. I often put my hand in my pocket and keep us going so if your readers can donate via our website, or put on any events that will raise money, that would be brilliant. We would also really like to promote Anti Bullying week which begins on 17th November and we are fully supporting the ‘Give us a Break’ campaign which we hope your readers will join us in raising awareness about. Information can be found here.

“We would also really like to promote Anti Bullying week which begins on 17th November and we are fully supporting the ‘Give us a Break’ campaign and hope your readers will join us in raising awareness of this.”

Absolutely. I am sure our readers will really get behind this. Thank you so much for what was a really humbling hour. 

Not at all. Hopefully it may help some families going through their own struggles. Thank you.


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