A YEAR GONE BY

Saturday 30th July marked our 1st year Anniversary of being in the UK. It has als0 been well over a year since I blogged so here I am back at the drawing board

Our experience in the UK has been mostly good. The locals have been welcoming, the people are friendly and where we are situated, we are truly very lucky.I am absolutely loving the fact that I can hear cows from the back garden, hear churchbells ringing and listen to horses galloping by. Ducks crossing the road, hares in the field and also a few spottings of deer. Our view from the back garden is fields and the sea. Nothing much has changed since I lived here years ago, which is what I like about this part England. Where we live goes back to the 7th century, so a lot of history behind this little village!

I have definately been humbled by the whole experience here. We have enjoyed planting our own vegetables and herbs and furnishing our home with antique and vintage finds at the local charity shops to really give it that farmhouse country feel.

We are enjoying the walks in the country, the woods and by the sea and letting children be children in nature as it should be! No need to worry about big high fences and walls. The kids toys & bikes can stay outside in the front garden.

Most importantly, Kendall has been through a very rough time and she has been supported to the extent where I found the whole experience overwhelming as we have been supported as a family. I now get some support through support workers which allows time to spend with Jamie as well as time to myself during the School holidays. Professionals have been incredibly helpful and could not wish for a more dedicated team to work with our family. The minset is completely different and revolves around the child with a disability and the family and not the professional. All meetings/sessions/assessments have been done in the comfort of our own home so not to raise anxiety levels for Kendall. We are very lucky to live in a country where they look after children with disabilities and provide support in all aspects. With this support, Kendall is reduced to one medication as opposed to three and is now full time placed in school and is a happy young woman.

Other things I enjoy about the UK is that the elderly are taken care of, they have a good reliable transport system, there is no drinking and driving, they are big on recycling and are very tight on the safety of children. These are all big plus factors for me. And not to mention that all my family are close by.

Skelton Castle

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

All in all it has been a positive experience and look forward to the next few years

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

wRonG pLaNeT

Today is one of those days where living with Autism can be extremely overwhelming as a Parent.  I have been struggling with sleep with Kendall since February, waking up during the night, in and out of the lounge, switching lights on and off, getting back to bed and then repeating the same ritual for a couple of hours with the odd shreek inbetween that frightens the living daylights out of you.

In the last week I tried Melatonin which seemed to help for a few nights, but the last couple of days we have been back to the same habits. Shouting just makes things worse and makes her cry and bang her head against the wall. Speaking calmly doesn’t always help either when she is in a state of anxiety. The Melatonin seems to have awakened some senses, which comes with Obsessive Compulsive Disorder. Each evening before she goes to bed she takes water and wets her tummy, and the top of each leg (sames places every night). This morning Kendall was trying to get dressed with ritualistic behaviour of putting her trousers on in her bedroom, lights on and off, going to the bathroom, taking trousers off, back to the bedroom and changing into another pair of trousers and the same behaviour all over again about 50 times.

I know that she can’t help it and that there is something sensory going on with her, either inside or outside her body, but with her being non verbal it is very difficult to speculate and know what she is really going through. I seriously wish I had the answers as I feel like I am in need of therapy at the moment! Some days I cope and others I don’t. Today is one of those days where I am not coping.

What I do know, is that the way that I have taught Kendall has been totally off the mark all these years. We are trying to make children with Autism conform to our world and they make no sense of our world. An example is that I made Kendalls room very pretty and girly with loads of hanging fairies, a tree with fairy lights and fairies hanging from the tree, lamps and pretty wall hangings.  All of these things were trashed and now her room consists of a bed and curtains and thats it. It’s not because she is naughty it is because these “things” are not important and they serve no purpose in her world.

Another example is “stimming” (self stimulation). We are conditioned to teach our children not to self stimulate. Why not? It is one of lifes pleasures for them and we are teaching them not to do it. They experience all their senses differently to what we do and is often their way of communicating with the world. People with Autism have their own language

Sensory overload causes meltdowns as people with Autism hear, see and experience the world differently to what we do. If people with Autism are so different and their brains are different, why are we trying to convert them into “Neurotypical” beings? I think we have all lost the plot somewhere. A perfect example of this would be medication. Medications are developed for neurotypical brains and so when a child with Autism is given medication, they are pretty much being used as a guinea pig to see what works and what doesn’t (trust me I know – thousands of Rands later and what a complete waste of time).

Wouldn’t it be nice if we could just let our children be, let them explore the world  and environment for themselves instead of insisting they become part of our world and conform to our rules. Who wrote the book on social rules anyway?

FUNNY MOMENTS OF AUTISM

Life has been a little turbulant this year, but having Kendall come to work with me everyday has also reminded me of the funnies in the past and what a sense of humour she has.

I remember a few years ago we went away for a weekend and left the kids with my folks. My Mom was working on the Saturday and my Dad had to go to Builders Warehouse to buy a new tap and so he took Kendall along with him. Whilst looking for a tap, Kendall decided she needed to make a wee. As he was in the plumbing section, there were plenty of toilets on display and she quickly headed for one of the toliets to her liking, pulled down her pants and did her business! Needless to say, my Dad quickly grabbed what he needed and headed for the nearest teller feeling highly embarrassed.

Another moment was when Dad took her with to the shop to buy cigarettes and she wanted a sweet. Dad told her that there was only money for cigarettes to which she responded with a big loud fart! Dad handled it well in a shop full of people by saying “are you finished now?”, although probably was wishing that the ground would swallow him up.

Try going out for dinner, arrive at a family restaurant and watch peoples faces when Kendall sneaks a chip or piece of tomato off of their plate when she walks past.

At the office we have had people here and when they have left she looks at me, smiles and says “ass hole”, this coming from a non verbal child and in context can only make you laugh, especially if you share the same sentiments

Kendall has no worries about sitting here and farting and then saying “pardon me” , going to the toilet without closing the door and literally letting off some steam. She is who she is, an innocent free spirited child who actually gives us lots of joys amongst the sorrows. It is not all doom and gloom, it can just sometimes be very overwhelming as a Parent.

CHARITY SHOPS OPERATING ILLEGALLY

Please be aware of Charity Shope operating illegally and ask for a certified copy of the NPO certificate.

Unfortunately there are too many scammers out there. You cannot open a CHARITY shop if it is for your own benefit! I am apalled that people can actually do such a thing and in the interim give hard working Charity Organisations a bad name and put us at risk. We have been around for 67 years and every cent raised at our Charity shop goes towards the education of children with Autism.

WHAT MAKES A GOOD BOSS ANYWAY?

“The only time some people work like a horse is when the boss rides them.” True or False? I have been managing staff for the past 10 years and do not believe in this method of management. I have always been kind, generous and most of all understanding. At this moment in time, I am actually wondering if this is the correct method of management as lately I am the one being taken for a ride. The more you give, the more a person expects. It is not in my nature to be a dictator or a slave driver but was advised today that it does not pay to be a kind Boss, the law does not see kind, as all the kind things you do get thrown out of the window. I find this very sad.

Personally, I had 8 years in the Corporate world prior and I was an employee that worked extremely hard, would be asked to do something once and I would get on with it without having to be asked a second time. I would consider myself as a very dedicated and honest worker and would employ me any day

I have always had a really good relationship with my Bosses and could honestly call them my friends that I met socially over weekends. However I had the utmost RESPECT for them at all times, something I find lacking today by some employees.

So what makes a good Boss anyway? Someone who is constantly looking over your shoulder and checking your every move or someone who trusts you to get on with your work to the best of your ability? Food for thought..comments would be much appreciated.

WORLD AUTISM AWARENESS DAY

This is what the big hype is about – On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, which declares April 2nd as World Autism Awareness Day (WAAD) in perpetuity. The UN resolution is one of only three official disease-specific United Nation days and will bring the worlds attention to Autism, a pervasive developmental disorder than affects tens of millions.

The World Autism Awareness Day resolution encourages all member states to take measures to raise awareness about Autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevelance and high rate of Autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on Autism as a global health crisis. WAAD activities help to increase and develop world knowledge of the Autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally WAAD celebrates the unique talents and skills of persons with Autism and is a day when individuals with Autism are warmly welcomed and embraced in community events around the globe.

By bringing together Autism Organsations around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help.

Please join us in our effort to inspire compassion, inclusion and hope.

IS THIS AN APRIL FOOLS JOKE? WELL I AM NOT LAUGHING

Okay, so today (1st April) I had to appear in court with regards to maintenance. Mr X did not pitch, which is pretty much what I anticipated considering his lack of interest in his daughter. But the plot thickens…notice was sent to Magistrates Court in Jhb and they failed to notify him as they “probably did not have time”. Not only that, but I have now been told to go to the Magistrates Court in Cape Town and start the process from scratch!

I started proceedings with an attorney in July last year. 5 months later and R5000 down the drain I was told to go directly to the Maintenance Court myself as he fails to provide any information. My question is why not tell me this beforehand, I could have saved the R5000 and would be a lot closer down the line by now!?

Why does the system in South Africa constantly fail our children? If this is an April Fool’s joke, I am not laughing!

ALL CHILDREN WITH AUTISM HAVE THE RIGHT TO AN EDUCATION

Today has probably been the saddest and most emotional days of my entire existence. I have cried buckets and the tears are still flowing. 5 years ago I set up a School for Autism to deal with the deemed  “lower end” of the spectrum children and children within the vacinity to ensure they have the right to an education which is enshrined in our Constitution. I fully believe that ALL children with Autism are educatable and have the right to be educated full stop!

5 years later I find myself in a very difficult position that my daughter is not allowed back next week due to her behaviour, after a staff member refusing to deal with her and have her in his class. No forewarning, meeting, notice period etc. Kendall was the oldest in the school (13 years) and has presented very difficult behaviour since puberty set in. Saying this, it is a challenge that most Parents are presented with at this age and is part and parcel of the Disorder. Being the Parent and the employer also presents its own problems, even if the two issues are separated.

We are leaving soon, and will hopefully get the care that Kendall so rightfully deserves as South African Government have failed dismally in every aspect. It is so sad that no school wants to take on the typical “kanner autism” child and deal with the challenges it presents. It is far easier to take on the higher functioning child and claim recovery and cure! It is all a lot of bollocks really. No matter where I am in in the world I will advocate for the rights of people who do not have the voice to speak!

Rest assured I will get to the bottom of all of this, not because this is my child (she will never set foot in that school again) but to prevent other Parents going  through the same ordeal. Autism is a complex, behavioural and biological disorder and if you cannot deal with that, then you should not be involved in the field of Autism at all. What the hell happended to compassion? Do people work in the field of disability/Autism just to receive a salary or is their real compassion for people to help people who cannot help themselves? I seriously question this.

Kendall is non verbal and us talking about the situation this evening made Kendall cry. They say people with Autism show no emotion, This is the biggest load of rubbish ever! This has had a serious affect on her and her ripping clothes, wetting etc is probably due to the fact that she knows she is not wanted at the school. A “neurotypical” person would not be able to live under these circumstances so how would a non verbal autist feel?

I will always fight for the right of people who do not have a voice, they have a right to every opportunity in the life that others share. They are human beings  and no less deserving of the same rights eveyone else has and should not be discriminated against!

GOING BACK TO MY ROOTS

Talk about the winds of change…there are gale force winds blowing. Our family have decided to relocate to the UK at the end of October this year. So after a decade of putting Autism on the map in the Western Cape and South Africa, it is time to move on. My folks will be moving on the 30th March which leaves no support structure for our family. It is time to go back to my roots in North Yorkshire, England, the land of sheep, giant yorkshire puds and fish ‘n chips!

Not an easy decision, but it is time to put our family first. Quite a daunting task ahead with restructuring Autism Western Cape to take it to the next level, selling house and its contents, cars and starting life all over again. My biggest concern at the moment is getting Kendall on a plane. A child who suffers from sensory overload. She will have to be sedated, so will probably be the longest 12 hours of my entire life, which I am not looking forward to. The elment of change is challenging for us and for Kendall even more so with her Autism.

So 10/2010 will be the end of another chapter in our lives. It is a happy sad moment, sad to leave the sun, having a steak on the braai, awesome friends and our jobs that we are so passionate about. Happy to relive childhood memories of playing in the snow in winter, taking walks in the woods in summer and picking wild brambles, strawberries and blueberries to make homemade pie. And so another journey begins….

BEWARE OF FALSE CLAIMS

Yesterday my colleague received a phone call from a Parent who was told to put their child with Autism on the Baseline Diet, claiming that “If you want your child to speak, you have to do it”.

Despite the lack of evidence of the Baseline Diet helping children with Autism, I cannot grasp why someone with NO qualification on Dietary Intervention would tell a vulnerable Parent to put their child on a Baseline Diet and claim it as a “cure”. Children can get seriously malnourished and can suffer from seizures and high fevers. Hardly something that can “cure” Autism!

There are many interventions available for Autism, including the Gluten and Casein Diet. These however should be done in consultation with a Dietician and not with a person with no Dietary or Nutritional background. Each child with Autism is very unique and before jumping head first with “cure” claims, thorough tests and research should be done first.

Listening to advice people offer is important, however equally important is that Parents are empowered through knowledge to make their own informed decisions. Talk to other Parents who have children with Autism. Parents are the best advocates for their children. Parents may be tempted to desperately search for help, cures etc but beware of “old wives tales” that promise miracle cures. Autism is not curable, but treatable and early intervention will ensure the child reaches their full potential.