Leonie's Story

Some  years ago I was introduced to Autism and Asperger Syndrome when I applied for a “nanny” position.  My employer was in her late twenties and had a one year old daughter.  Her husband had just died and left her with the business. When her daughter was younger it was easy to keep her at her place of work, but as she got older it became difficult.  She had one of the offices converted into a play room so that her daughter could be near her while she worked.  

I have a sister with Down Syndrome and because she thought that my background with a special needs child counted in my favor; I got the job which I desperately needed.  

We both knew nothing about Autism.  In those days little was known about Autism and Asperger Syndrome. She had taken her daughter to a neurologist and pediatrician because at the age of 6 months she had not started crawling.  My employer was told that some children were late developers.  She did start crawling soon after.   

One of the first things I noticed was that she did not even look as though she noticed anything or anyone around her.  She was very quiet and only cried when she was wet or hungry. She also had a lot of problems keeping her balance and constantly fell over backwards.  I also noticed that when the furniture in the room was cleaned, her eyes got puffy and she sneezed uncontrollably.  She would also start crying uncontrollably, biting and hitting herself. 

So we took her to the pediatrician, who took blood, did scans and tested her hearing.  Nothing!  We were referred back to the neurologist that suggested that no furniture polish be used in the room.  He could not find anything wrong. But things got worse and at the age of 2 she had not yet said a single word.  She also had frequent tantrums that left her mother and me exhausted and drained.  She had now started to attack us, pinching, biting and kicking us.  One of my sisters confronted my boyfriend behind my back and accused him of abusing me because I always had marks on me” 

Autism or Asperger Syndrome was never mentioned when we started visiting other professionals.  No-one could find a problem, but did inform my employer that discipline sometimes helped!  At that time I thought of finding another job frequently. 

One morning she had such a bad tantrum that she passed out.  She was kept overnight for observation at the hospital and sent home.  I think the only thing that kept me from finding another job was because this beautiful child fascinated me and I felt so sorry for her because she could not speak.  Also her poor mother was struggling to run the company on her own, she was still grieving over her husband and this little girl hated everyone around her, or so we thought.  Who would be willing to look after her if I left? 

Who would sit up with her at night?  Her sleeping pattern had always been iradical and at night she tossed and turned for hours.  It was as though she did not need to sleep and her eyes had permanent dark rings around them.

One day when I went to the supermarket, she had another major tantrum.  As usual, while I was trying desperately to calm her down and trying to stop her from hurting herself and me, a lady tapped me on the shoulder and said “allow me”  Before I could reply, she snatched the child and walked out of the supermarket, with me in hot pursuit.  What a sight that must have been!    

To make a long story short, she happened to have a son that was living with Autism.  She had moved from America to South Africa.  In America everyone knew about Autism.  This lady took me home with her (I was in a state because I thought she was kidnapping my employer’s daughter.) and told me what she knew about Autism and Asperger Syndrome and how she overcame difficulties with her son.  The lady gave me the card of her doctor in South Africa who had constant contact with the doctor that she used in America.

 

When I got home I was excited and I told my employer what had happened. She did not like what she heard, but said that if her daughter had Autism she would at least be relieved to find out what was wrong with her.  At the age of 3 her daughter was diagnosed with Autism, but later this diagnosis was changed to Asperger Syndrome. 

One day I noticed that she was very interested in her computer and when I mentioned it to her mother she immediately presented her daughter with a computer and educational DVD’s for toddlers.  She ignored the computer and the DVD’s.  While we were watching television one day, a program called Telly Tubbies were showing.  There was no end to her babblings! 

She was so exited and fascinated by these creatures on the screen that she tried to talk like they did.  When I mentioned this to my employer, she made some calls and within 2 weeks a few DVD’s arrived all the way from the UK.  When she saw the cover of the DVD’s she would not let go.  I eventually took it from her when she fell asleep. 

From what we now knew about Asperger syndrome, I knew that if I used her fascination with the Telly Tubbies, we might be able to get through to her.  When she awoke, I was sitting in front of her computer playing one of her games.  When she saw the screen, she stood watching for a few minutes, coming closer and closer until I eventually picked her up to sit on my lap. 

To make a long story short, within the month she was playing Telly Tubbies as though she had been doing it since birth.  All she wanted to do the whole day was to play  her games.  By the end of the second month she started saying everything that the Telly Tubbies said.  One had to listen very carefully when she spoke because her speech was difficult to understand.   

Her fascination with the Telly Tubbies soon became a problem.  It was my job to stimulate her and  no matter what I tried, she only wanted to play the Telly Tubby games on her computer.  She did not want to move from the screen. 

 

One Saturday I walked past a shop and saw Telly Tubby dolls.  This gave me an idea.  I spoke to my employer and we went shopping.  We wanted to purchase a big Tinkie Winky, which was her favorite character.   

We found lots of small ones, but no big ones.  So my employer had a big one made by a tailor.  We also bought everything that could be associated with the games that she was so fond of playing.  The items included a number of small characters like Tinkie Winky, Dipsy, Lala, Po and , a ball, handbag, scooter, toy sheep, dog, etc., etc.    

Within two days a Large Tinkie Winky was delivered by the tailor.  That night she was presented with the doll.  It was tugged into bed with her and within a week she slept right through the night, no tossing and turning. 

I decided to take her education a step forward.  I started with math’s first using 3 Tinkie Winky dolls.  She loved to count them.  Her mother went out and bought miniatures, 20 in all.  Before long she could count to twenty and do sums with the total up to twenty.  She learned quickly and had an amazing memory.  All the time that we were counting, I worked on her pronunciation and she was so eager to do it right. 

I found that I could do anything with her if I included the Telly Tubbies.  She never allowed me to touch her big doll.  I asked her mother to have another made for me, which she did.

Now I also had a friend.  I hugged my doll and she copied me.  I kissed my doll and she copied me.  I talked with my doll and she copied me.  Then I took my doll’s hand and touched her doll and she copied me.  Eventually I started touching her and she touched me, hugging her ……………..  When she was comfortable with me we started incorporating my employer.  Up to this time, she had always kept her mother at a distance. When she finally hugged and kissed her mother out of her own free will, the look on her mother’s face could not have been bought with all the money in the world.   I was so inspired by this child’s progress that I had sleepless nights thinking about ways to help her.

On her 5th birthday her mother was involved in an accident.  She hung on for 3 months.  Before she died she asked me if I would adopt her daughter and I agreed.  Her mother’s death was a great loss to her, and for months I thought that she would never be herself again. 

She regressed overnight.  She stopped talking, cried most of the time, allowed no one near her, did not play with her doll, did not want anything to do with anybody.

 I could not let my daughter get lost again.  I had grown to love her and she was now my daughter even though I did not give birth to her.  I hired a ventriloquist.   One morning her doll started crying softly and so did mine.   My daughter did nothing.  I took my doll and asked her why she was crying, to which she answered that she was alone.  So I told my doll that I was still there and that I loved her and would always love her.  She did nothing.

The next day the ventriloquist came again.  It took 17 agonizing days, but it worked.  We slowly bought her back, and once again the Telly Tubbies came through for her.  It all sounds easy, but believe me it wasn’t. 

It took a lot of planning, agonizing, cajoling, pleading, crying, laughing, yes we did eventually start laughing again, to help her to find herself again.

When my daughter was 8 years old a friend of mine closed her boutique because it wasn’t doing well any more.   I bought the mannequins in the boutique because I thought it could help me to help her to dress herself and keep her hair tidy.   She has long hair and she loves it when I brush and tease it.  She never wanted to do it herself though. 

I started the same routine as when we used the Telly Tubbies to get her to do something and it worked.  She loved to dress the mannequins and to do their hair, but still do not want to do her own her.

My daughter’s mother left her a trust fund so that she would never have to work.  But no-one can have a full life if they do not do something with their life.  So I appointed a private tutor, who taught her the skills of hairdressing.   Easy said, but believe me, not easily done.  But, it was worth it, over and over!

 

Today she is the owner of a hairdresser.  She loves dying and blow drying older people’s hair and she is very good at it.    She had always found it easier to communicate with much older people than her.  I think it is because older people are not as judgmental as younger people.  Off course the business is really being run by trustees, but the fact is, she is doing what she loves. 

In her free time she loves watching Walt Disney movies with me, going to the zoo, building puzzles and doing crosswords.  She has a strict routine that she follows to help her cope with daily living.  She is a bit slow, but she is a hard worker and has a strong customer base with the elder clientele. 

She still has Aspergers and will always have some difficulty in communicating.  She has days when things just do not work out as it should.  She is still a bit clumsy but her beautiful smile makes up for it.  She knows and I know that I will always be her biggest fan.

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