Creating something out of nothing

I would like to tell you about our East London Adult Autism Newspaper Project, as a mom, this is a very important project to me.

In July 2016, we, the Autism SA staff met for a week of training and team building in Johannesburg and in that week we had the opportunity to meet Lungi – Balungile Sokhulu – and learn about the Newspaper Recycling project at the Johannesburg School for Autism.  Because I am a mom of a 19 year old young man with ASD and manager and co-founder of Autism Sinethemba Early Intervention Center in East London, and RDO for Eastern Cape for Autism South Africa, I felt this is something I could introduce here in East London to start with to the young adults and final year students at the Special Schools with ASD units in our area.  The aim would be to teach the young people a skill that they could use in life to be productive and earn an income, however small it may be, but it would help them to feel they are contributing in some way to their own well-being.

I started by approaching Autism SA to get Lungi to East London to come and teach us the skills.  And in September 2016, Lungi came to East London for the first of 4 phases of training.  Autism SA supplied the wooden boards, glue, guillotine and other small materials that she needed for the Train the Trainer course.  I had a lot of interest in the first phase of training and we had a whole classroom full of people, young adults and their parents or caregivers.  I even had some of the schools who sent teachers for the training.  Some of these young people, parents and teachers never came back after the first day of training – transport is a big issue.

We learned to sort the paper, cut the paper, then how to roll the paper into a reed-like stick.  These sticks are the basis of all of our articles that we make and this is the first and major skill that we need to teach and perfect.

We receive very generous weekly donations of the newspaper we use for our project from Dispatch Media and Cambridge Methodist Church via a very wonderful man, Rodger Norman!  For different colours, we often go to GAME, OK Foods, SPAR, etc to collect their promotional flyers and adverts that are left over for a specific colour that we need for a project.  Beautiful articles need a bit of out the box thinking to get the colour we need.  We never paint anything, the only colour we need comes from the newspaper we use.  I will never look at a newspaper the same way again, it does not matter what is written on the page, just tell me what colour it is??

We needed to perfect this one skill to move onto the next stage of our training.  Lungi returned every following month for the next phase of training.  We learned to weave the sticks into a flat mat, we learned to cut a pattern out onto the woven mat, we learned how to glue the edging onto the pattern sides, we learned how to weave a 6 stick pleat to make the handles for our hand bags, we learned how to stitch the bag’s sides and glue in a lining, attach the handle and the fastener / clasp and the decorative button (also make from the rolled sticks) and complete and varnish our handbags.  We then each earned a certificate as a trainer to say we completed all the levels and phases of the training and can now teach others the skills we have learned from Lungi.

After we completed and received our certificates, Lungi handed over the project to us to run as our own!!  With her Blessing.

Along the way I have learned a few things:

Not all people who join our program have the capabilities to roll sticks, weave, sew, pleat, etc. and we may need to consider what they can and cannot do.  We need to work with their strengths and not force them to do what they clearly cannot do.

We also need to know that our program is not for everyone and some young people will start and not like what we are doing – or they do not have the skills required and the parents decide to not bring them back again, they will stop coming to our work group and not complete the training, but we may lose some and we may gain some new people.  We have a number of regulars who attend every week.

The program requires the parent or caregiver to attend with the young person.  This helps to strengthen the group and the bond between the family members.  It is very good to see how parent and child work together.  We teach the skills to both and we ask that the parent or caregiver then work with the young person at home as well.  If the parent or caregivers are not 100% on board with our program, the child will not learn and grow in the skills we are trying to teach.

This group also serves as a social get together for the young people and a support group for the parents who may face similar issues at home and school.  We often celebrate birthdays with cake, have coffee / tea, chat, laugh and just have fun.  The youngsters may not always talk to each other, but they are very aware of each other and keep a close eye on their “friends”.  They get to know each other’s personalities and ‘moods’ and really look out for each other.  We create a better life for our young people, they build a lot of confidence because they have new skills that they can earn money from.  They learn to socialize and fit into a family, and group better without pressure at all.

In the group, we work on better communication skills even with those who cannot verbally communicate.  I have tried to teach proper communication skills to request their needs and express themselves.  WE are using a lot of hand gestures and hand-over-hand assistance – mostly when we are teaching new skills – with those who cannot verbally communicate and a few MAKATON signs are used as well. My son Daniel, Adrian, Rohan and a few of the other young men, can have conversations with each other and the main topics are normally tv programs, series they are watching, movies and some like music as well.  They have exchanged cell numbers and also communicate via sms and whatsapp where they can.  I can also see how the communication and referencing by looking at them when they need help or trying to communicate something spontaneously, this also serves to improve eye contact which is really difficult for them.

The young men in our group range in age from 16 to 21.  They all get on as well as can be expected for a group of young men with Autism.  The youngest of the group even wants to arrange formal pc/internet based gaming and have asked a few of our young guys to join his team.

The pride is very obvious when the young person complete their article they are busy with, or as in the case of Adrian, how many sticks he can roll in 2 hours (332 is his new personal best!).  This is a very important thing for our young people to learn and feel.  They feel pride in their work and completing a project / article that is both beautiful and unique.  You will never find another one like it.  It provides a sense of accomplishment and completion of task.  A task has a clear beginning – the cut paper to be rolled into sticks – to the applying of varnish to the end product to seal it – to the sale of the item and putting money in their bank account or pocket.

We have had a few successful market days where the young people sold their handbags and other items they made.

We encourage them to make as many items as possible, when they sell the items, 90% of the money they make goes to them, 10% comes to the project to buy more glue, clasps and varnish.  We often take orders, we have our own facebook page – East London Autism Newspaper Craft Project – and each young adult has their own “tag” to put on the item they are selling.  This will have the parents email and cell phone number on for future orders.


We have now been working for two wonderful years, we have some very dedicated parents and caregivers and most wonderful super star young men – all the young ladies are missing

We meet every Saturday afternoon from 2pm to 4pm at Autism Sinethemba, Cambridge, East London, and we have a break for a few Saturdays during school holidays – us parents have other kids too, you know………………………

As a mom of a child with ASD, my focus changes as he gets older.  When he was 4, I started Autism Sinethemba, when he was in Primary School, I became the SGB Chairperson for his school for 7 years, now that he is a young adult, I needed to find something he could do as an adult to be productive and earn money, this project is it!  Many parents feel the same way,that is why we are successful two years after we started.  We have the commitment of parents who have the same need as I do and the same vision for their young fellows.





On the 8th day He made Autism Parents

Genesis 1 1:31

In 6 God-Days, He made:

Day 1     –              Light and Dark

Day 2     –              Water Above (Clouds and rain/ Atmosphere) and Water Below (water on earth)

Day 3     –              Sea and Land and all plants and trees on the land, fruit bearing and seed bearing plants.

Day 4     –              Seasons, days, years, light in the sky for day – sun – and night – moon and stars.

Day 5     –              Sea and all the sea creatures, Sky and all the winged birds and told them to multiply and fill the sea and the sky.

Day 6     –              Land animals and told them to multiply and finally Man and Woman and told them to multiply and “supervise” all His creations and take care of it.

Day 7     –              He Rested.

He had to rest.  He had to take time off to think carefully before he could create His best creation ever:  Autism Parents.  He had to really get it right because we are a special breed of people.

Autism Parents did NOT get on their knees one day and pray:  “Please Lord, I am so happy with what I have at this moment that it makes me feel like I need a challenge.”  Or, “Dear Lord, I am really bored with my life, I need a challenge.”  Believe me, every day with a child or adult with Autism is a challenge.

I have worked in this field for 15 years now, ever since my son was diagnosed at 4 years of age.  As parents it was possibly the worst thing to deal with, the diagnostic process, the looking for answers, the trying to find other parents out there and finding out that although our children all have Autism, my child is not at all like yours and your challenges and struggles are not what I am going through at all.  We researched, we asked questions, we read every book we could – not enough in the library at all, but we bought and borrowed.  But I soon discovered that I could read and learn as much as I can, but little of it applied to my son.  He is a unique piece of Human Art.  He is so sweet now but when he was 4 to 5 years old, boy oh boy, he was not a nice child at all to be around.  He tested my patience; he got on my very, very last nerve.  I just decided I will never give up on him.  I would learn and grow with him as I needed to.  But I must tell you that every parent I have ever encountered going through the same process as us, find it very hard to cope with.  The long diagnostic process, the money spent on therapy and time off work to take your child for all these assessments and therapy sessions.  Driving a car with a child who simply refuse to sit in the car seat, strapped in.  The screaming, tantrums, melt downs and flailing little bodies.  The stubborn children who, when their minds are made up, it stays made up.  The trying to puzzle what the ‘communication’ from your child means.  WHAT DO YOU WANT????????  UUUUUUuuuurrrrrrrrrggggggggggggg!!  I lived in a state of fear and nerves for years.  And it became 10 fold more intense when he got sick.  Oh Lordy, I went into panic mode, I still do.

The other big problem is being sleep deprived.  My son did not want to sleep, he never seemed to get tired.  The doctor would not give him something to help him (and us) sleep at night.  Some days I drove to work and could not remember how I got there………………..

But my point is, we are not “special parent” like I so often hear from people.  The phrase “God only give special children to very special parents” pisses me off totally.  I am not a special parent, I am a dead normal mommy who had to come to terms with a very complex disorder and had to sink or swim.  I take pride in the fact that I did not sink, I had two years of getting to terms with it and waking up in the morning and thinking, jeeeeeze that was a terrible nightmare just to realise it is real!

From parents I have known in my 15 year journey with Autism Spectrum Disorder I have learned that we need to stand together, we need to rely on each other and ask for help when we need it.  It is very difficult to do because for some reason we want to be Super Parents and do it all ourselves, but we get burned out in the process.  We cannot let the “ag shame syndrome” get anywhere near us or our children.  We need to raise them as normal children and discipline them when they are naughty and love and respect them when they don’t understand the world around them.

We need to grow a thick skin and a tough heart to deal with our children and the (sarcastically) “interested” people.  We deal with comments and stares because we have children who look ‘normal’ but behave differently.  We suffer from depression and anxiety because our children need to be cared for even when we are not around and we trust no one to do it as well as we can.  We live with special education, medication (changes), therapy, homework.  We live with a government department for every stage of our child’s development and education and every one of them have their own regulations.  SASSA grant or no SASSA grant, SARS claims, doctor’s reports, deciphering what it all means and how it applies to MY child.  What is allowed, what decisions I can make for my child. What must I make my child do by himself or what I can do for him without being seen as a controlling, interfering parent.  Autism as a disorder is a very interesting but difficult thing to get to grips with, we need to deal with inflexible children, routines, rituals, stimming, sensory over or under stimulations, non-verbal children with their own way of communicating with us that we feel only we can ‘translate’ and understand, their own unique special interest, food preferences that lasts for months or years and can change overnight and with no communication skills to tell you what they need now or why they changed, all of a sudden your child who ate rice krispies for 7 years now only will eat pink yogurt from sun up to sun down.  And pink flavoured water from one bottle does not smell the same as another brand.  His food ‘yes’ list is getting shorter and the food ‘Hell NO’ list is getting longer.

I am not a single parent with one child only.  I have a husband and a daughter, I have other family members living with us and coming and going all day long.  100% of my time and energy cannot go only into my boy, I have to be a wife, mother, aunt, daughter in law and friend to all the other people in my life too.  I have to often remind other parents of the fact that although we have a very important job to do to be the major care giver to our children with Autism, we also have to pay special attention to our other family members, and not neglect our spouses.  We need to also make a very special effort to be a mom to our other kids, love them equally.  They also deserve our time, effort and love, our dedication and all things they are entitled to.

As parents we are never allowed to have a bad day, we need to remain happy and positive, full of energy and keep smiling.  We may never get sick.  We can never take a day off.  We are different to teachers and therapists and even the doctor who are in control of the diagnoses and medication. They see our kids for an appointment or part of the day.  Our lives revolve around 24/7 care and love for our children and young adults with Autism.  We love them regardless. Autism is not an excuse, it may be the reason………………. We will become the parents who others frown upon and silently fear.  We are those creations that God had to sit and think about for a whole God-Day, the 7th day.

I have met all kinds of Autism Parents and never met a BAD parent, never a parent who would not do absolutely anything for their children.  The Autism parent will fight to the death to protect their child.  We will take you and your opinion DOWN!  We are the Grisly Momma and Poppa Bears of the world.  We put our big feet in our child’s business at home, school, therapy and everywhere.

We will never stop learning and helping our kids.  We are tenacious; we made ourselves strong in mind and soul.  We have learned what we are capable of to help our kids.  Every now and again, we take a bit of time off to recuperate and get our shit together, but we bounce back fast enough.  We are God’s special creations.

We are the 8th Day Creations, the Autism Parents!