Boy, aged 12, secures bus for our school

When Mark Hopkins (12) visited the Johannesburg Hospital School for Autism in Braamfontein as part of a volunteer group, he was struck by the desire to help even further.

Mark Hopkins, was able to secure a bus for the Johannesburg School for Autism

The school offers cutting-edge education to severely autistic children but must make every cent count, as it is a government school with a large proportion of learners from grant-dependent families. Mark, who is known as a compassionate child, had previously encountered autistic people and understands the condition well.

“Life is very difficult for autistic children because they struggle to communicate, make friends and be understood,” he says. “They need to be treated with gentleness, and with kindness.”

Mark was visiting as part of a volunteer group from his own school Bellavista in Birdhaven, Johannesburg. As part of this own school’s charity drive, the volunteer group had packed food hampers and was delivering them to Johannesburg Hospital School. “The people we gave the hampers to were very nice and friendly, and appreciated everything we gave them,” he said. “I thought the school building needed a little work, so I asked my dad if his company could sponsor the school.”

Mark’s father, Guy, is managing director at Trollope Mining Services. The company hosts an annual mountain bike challenge, the Lesotho High Altitude Challenge, and donates the sponsorships that the cyclists raise – along with generous donations from the company’s suppliers, sub-contractors and clients – to charity. This year, due to Mark’s prompting, the company’s charity scouts visited the school and decided that it should be one of two recipients for the annual charity drive.

As it happens, the school asked not for assistance improving their building, but for something they have desperately needed for some time – a bus that will allow teachers to take the learners on outings where they can learn the skills that other, more able-bodied people take for granted. These skills include how to greet shop assistants and ask for help; how to choose items and pay for them in a supermarket, and how to negotiate the enormous potential confusions, for a severely autistic child, of using an public bathroom.

These simple activities can cause such anxiety in autistic children that they have a complete meltdown. Learning to negotiate public spaces is crucial for the future of autistic children in society, and also to enable their families to function as ‘normally’ as possible in their own communities.

By tradition, Trollope Mining Service’s Lesotho High Altitude Cycle Challenge mainly raises money for disadvantaged disabled children. This year the cycle challenge was taken to the next level with a new, very tough ‘ xtreme’ route covering 300km, over longer distances and even rockier terrain than in previous years, and reaching an even higher altitude.

The result was that enough money was raised enough money to buy the school a brand-new 22-seater VW Crafter Bus, costing over R600 000. The bus was presented to the Autism School at a company function in May.

“We have been fundraising for the bus for some time, and are overjoyed to be receiving it,” said the school’s principal, Ronel van Biljon. “It is going to make an enormous difference, in hundreds of our learners’ lives.

“Thank you to Mark for having an open heart, and for doing what he could to help others. We are very touched that it was a child’s efforts that resulted in such an important gift for the young learners at our school.”

Mark was named Pupil of the Month at his school for “recognising that there were children in need who would benefit from a charity drive”, and opting for the Johannesburg Hospital School for Autism.

“I feel great that I helped a school with something that will benefit the children every day – and will also help give the children a better future,” says Mark.

This blog post was written by Jo-Anne Smetherham

Autism Life

When I sit down to write this story, I stare at the empty screen because it is hard to know where and how to start it.

 

Before I had children, I imagined that when you have a disabled child, the child is born, and the doctors take your child away. They bring him or her back to you and tell you that your child has “such and such” condition. Pamphlets and contact numbers are given.  I  imagined that you get on with it. Celebrate your child’s unique life and achievements and help them reach their potential.

 

Unfortunately, my imagination is not reality.  Nothing can prepare you for the reality of what it is like! As a parent, I had to learn to negotiate the paths leading to a diagnosis of Autism Spectrum Disorder.

 

Two years and some months after my son was born we are still struggling to negotiate these paths. How to access the disability grant, formal diagnosis, special schools? How to sustain a career and be there for my son?

 

I have watched my career, my social life, and my marriage melt away before my eyes. None of them could withstand the sheer intensity of my son’s unique behaviours. The extent of time and money required to somehow try pin the situation down, just to gain an understanding and alleviate his discomfort in this world.

 

To be more specific, many of the practitioners we saw seemed very reluctant to diagnose my child. It seemed as though labeling him would be a bad thing. I would like to take this opportunity to denounce this practice, when you delay the diagnosis, you delay the child’s access to much needed services like therapy, special education, and grants.

 

My son has been ‘diagnosed’ for a year. I am still waiting for a doctor to put this in writing.  He is not on the low support part of the spectrum.  Has serious developmental delays, and behaviours, leading to no less than 8 different care arrangements in 2 years. As a result, I have since lost my job.

 

There is a ray of sunshine in all of this!  Eventually after four different therapists, my son now sees a speech and an occupational therapist. Both with experience in Autism Spectrum Disorder. This has been significant, not only for my son, who has worked through his intense fear of therapists and now enjoys therapy. But also for me, because this is where I gain support, advice and sharing of ideas about my son and autism. I craved this, from the first feeling that something was “not regular” with my child.

 

My son and I now lead what I internally think of as an “Autism Life”.  The house is arranged so that it is safe and user friendly for us. This too, led to the breakdown of our family.  When there is a larger family with more children to accommodate, there is resistance, judgement and arguments about arranging life to help the individual with autism.

 

My son is mysterious, driven, bright and headstrong.  I have become someone I could never have imagined. I am now driven to be outspoken and assertive, in the quest to make the best life possible for both him and I, his mom!

Perseverance: Getting A Service Dog for my Son

  “Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighbourhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.”

The above speech by Eleanor Roosevelt, delivered in 1959 on the tenth anniversary of the universal declaration of human rights, is one of my favourite quotes and how I feel when it comes to protecting the rights of our children with special needs.

My story began in February 2014 whilst reading a magazine publication about a young lady who had acquired the services of a dog that was able to pick up when her sugar levels dropped or rose to dangerous levels. On the sideline was a small insert article naming the Assist Dogs in South Africa trained by the South African Guide Dogs Association (SAGDA), these included “therapy” dogs for autistic children.  Until then I had only looked at the availability of these dogs overseas with envy and was unaware of the fact that SAGDA provided this service. An Autism Assistance dogs is trained to assist a person in order to help them gain independence. They assist in bringing down anxiety, prevent wandering in children and also provide companionship in an often lonely world for the autistic person.

I contacted SAGDA and received the forms to complete. One of the requirements is that you need to have the consent of your landlord.

We live in a lovely complex in a sea village on the North Coast of Durban.  We have a lovely community that knows and understands Conrad. The security complex offers me peace of mind with my husband working away eight months of the year. It is however a sectional title complex with numerous rules. On reading up on the rules in the booklet we received when moving in, I read that “(complex name) has a no pet’s policy. Should exceptional, mitigating circumstances exist, application may be made to the trustees for consideration (sic)” and based on this I applied to the trustees for permission to keep an autism assistance dog.

Unfortunately, a ‘round robin’ vote was held in lieu of a meeting and it was decided that Conrad would not be allowed to keep a dog in our complex. After the initial shock and anger of this reply and being told that if I didn’t like it then I should move, I decided that I as a mother of an autistic child, who faces numerous challenges on a daily basis would not be taking this laying down.

The South African Constitution is the supreme law of the land. No other law or action can supersede the provisions of the Constitution.

I knew this and I also knew that my child’s constitutional rights were being violated, as well as the Convention on the Rights of Persons with Disabilities intended to protect the rights and dignity of persons with disabilities. I knew these things but how was I, a Mom, with absolutely no legal background, able to face the trustees with these laws?

Initially I contacted ADR Network South Africa and two wonderful lawyers decided that they would help me as it was as they put it “a gross violation of human rights”. After an unsuccessful mediation session with the trustees’ lawyers and mine, we decided to file an application in the Equality Court of Durban. Unfortunately it found that this case was out of its jurisdiction and would need to be filed in a court with ‘higher” powers.

One of my sisters began an online petition stating that Conrad’s rights had been violated and the press had been alerted to my case and were asking me for my story. It was hectic to say the least. Our story featured in a couple of newspaper articles and the feedback I received was so positive and reassuring. I knew that I was doing the right thing.

Autism South Africa (A;SA) heard about my plight and in July 2014 Sandy from A;SA contacted me to inform me that an advocate, who also has a son with autism, was prepared to offer his services to me pro-bono.

It was shortly after this that the AGM was held by the body corporate of the complex and by a stroke of luck, besides one member, a new board of trustees was voted in. Usually, boards of trustees do not overturn a decision made by a previous board of trustees, but I decided to reapply for permission as I felt it was unfair to take the new board of trustees to court over a decision that it had not made. I resubmitted my application in November 2014.

Being a newly selected board, the process took a little longer than I would have liked, however the outcome was what I was hoping for. The trustees’ lawyers ultimately agreed with an opinion prepared by my advocates that neither the Sectional Title Act nor the rules of the complex supersede our Constitution and that, if they could only be interpreted as depriving the trustees of discretion to consider and approve or reject my application on its own terms (as the previous board had long maintained), they were inconsistent with the Constitution and of no force or effect. This was so because they discriminated against Conrad on the basis of his disability, failed to make reasonable accommodations for him, failed to give effect to the paramount importance of his best interests and infringed his right to dignity.

The day I received the email from the trustees granting me permission to keep the assistance dog here in the complex, I sat and stared at the words on the screen and my mind fleeted through the moments and situations I had gone through during the year and a half. I had lost old friends during the process because they did not like the way I defended myself when they stated that I could simply relocate or who grew ‘tired’ of my constant fight. However for every friend I lost, I gained at least five new ones. I received support worldwide and grew as a person and a mother. I cannot even say that I felt that ‘sweet justice’ feeling one hears about. All I knew is that one day I told tell my son that when I say I will fight to the ends of the earth for him, I can prove that I had done it before and I will do it again.

Why did I do this, especially when there was an option to move house? I refuse to allow people and society to dictate as to where or when my child may be because they have an issue with his autism and don’t understand that which they do not know. My son is autistic and the autism is an intrinsic part of his biology as a human being, I refuse to step aside because he was born different. We are still on the waiting list (which is about 18 to 24 months) with SAGDA for that extra special canine, chosen especially for Conrad as they were willing to keep us on the list and interview us during all the legal processes.

I have so many people to thank for all their help and assistance along this path, my husband Mornè, parents, sisters, friends, neighbours, strangers, the autism community (both parents and autistic adults), my lawyers, Autism South Africa and SAGDA.

If any parent is interested in getting an Autism Assistance dog for their child, they can contact SAGDA on 086 506 3364 or via their website www.guidedog.org.za.

 

Shelley Foot