Friday 13 January 2012

Christmas with my son Jarred (Autism)

Jarred, although he is 24, is still very excited about Christmas. Our family tradition is go first to Christmas Mass then home to open presents. A tradition that works well. It helps us to be on time for the Mass and it prolongs the excitement about opening presents. But mid way through Mass, when all is quiet, Jarred asks the question, loudly, "When are we going home to open our presents".

Jarred takes more interest in the wrapping paper and cards than the actual present. Well, it seems that way at first. Jarred will not use or play with his presents straight away.They get taken  to his cupboard. No one dare touch or look at them. They will stay there for about a week and then slowly he will look at them and start using them. He does the same with his birthday gifts.

Jarred enjoys the traditions of Christmas, the food, the visitors, the carols especially, Bony M being his favourite Christmas CD. He loves having people around even if he does not talk to them. Just having people there seems to lift his spirits. He enjoys a special celebration with special food, just as much as anyone else.

It goes to show, a person with autism is just like you and me. They just have a different way of living out their lives. 

Tuesday 12 July 2011

A day on the beach with my son 23 with autism.



Jarred
Spent the day with my son, Jarred, on the beach, He loved picking up seaweed and throwing it into the sea, watching it drift out with the tide while  bouncing on his toes, swinging his arms back and forth,  then it became an obsession and anything he could lay his hands on when into the sea including someones shirt.towel and hat.


A young girl was netting small fish out of the shallow water and putting them into a bucket. She spent time doing so. Jarred saw the bucket out of the corner of his eye and without a second glance sprinted 100m picked up the bucked and emptied the contents of the bucket before anyone could blink an eye. The poor girl could only look on in horror as her hard work was poured back into the sea. Her face almost in tears. My voice of NO JARRED echoed long after the deed was done, after hearing my voice Jarred dropped the bucket and ran on to pick up the next article on the sand. I know that his intentions was to throw the bucket into the sea and watch it float out with the tide. I caught up with him and took him to apologise to the girl after explaining to him what had happened. With sincerity he said sorry and added "I will never do that again". If he  understood the situation I will never know but from experiences I know that given the situation again he will repeat his action.  

When it was time to go he said, "NO I am having fun" and asked if he could play for another ten hours. In his conception of time this means a long time.


 Young adults with autism need your time, patience and understanding. Unfortunately we, as parents, do not always have the time they need.......


Has anyone had a similar experience?









Monday 20 June 2011

Autism - where to next...

Adults with Autism by The Academy for Adults with Autism


 Autism is a broad band of varying degrees and areas of ability, challenging behaviour and severe learning difficulties. Those who attend a special needs school (preferably autism-specific) from a young age, are fortunate to be accustomed to a structured routine suited to their specific individual needs and to be taught life skills in order to be as independent and capable as possible when older.  


 But where do they go from here…….
Once the child reaches the age of 18, they have to leave school and the implications from this day onwards are enormous. Parents then face the most difficult challenge of all: Where do I send my young adult who is probably still going through puberty and struggling to understand and cope with hormonal and physical changes, mood swings, emotions, not quite fitting into and being accepted within “normal” society, and this is over and above their frustrations with the condition of autism, and needing structure and intellectual stimulation?



The person with autism most often requires constant supervision and guidance all day, every day – all this is quite exhausting for a family, parents or single parent to cope with! When the person with autism is at home, a clear, strictly controlled, routine with suitable occupation needs to be put in place – this can prove to be quite a task, especially when no or very little help is available to the family.


Most often there seems to be very little, if any, support, from extended family and sometimes this is due to ignorance or fear of the difficulties and condition of autism.   Although there is an increase in public awareness of autism and related difficulties and the need for suitable facilities, this is an area that will always require ongoing attention and care. The future of persons with autism, in their adult years, their financial needs, their daily occupation and routine, social interaction, and stress on their families, is of great concern.


In today’s economy it is more often than not, essential for both parents to work to satisfy the needs of a family. In some cases, there is only a single parent who has no option, but to provide for the family. The person with autism is then left with a nanny or char or other family member, who probably has no experience or proper understanding of persons with autism, never mind the energy and time available solely for the demands of the person with autism.  Training in this area is becoming more available, but can also be costly. This kind of desperate situation can be damaging and stressful to the person with autism and can result in displays of frustration in moods, tantrums and aggression. We can add here that this is, of course, not the only reason for aggression in the person with autism – but can increase any existing behaviour problems.


The Academy for Adults with Autism is a body of concerned parents who have formed a non-profit organization in order to raise funds for and to cater for the needs of these young adults. Our focus is “A Better Life for Adults with Autism” and our ultimate aim is to provide a residential care facility specifically for adults with autism in Cape Town. Although a small but dynamic group, we have met our short term goal of establishing a work center for adults with autism where adults spend time, weekdays only at the moment, eight until four thirty, Monday to Friday, performing activities and jobs that suit their ability. They are given opportunities to pursue new occupations with close guidance and support from staff and are encouraged to also partake in art and music therapy. They are taken on a daily outing e.g.  a brisk walk to a nearby park and are encouraged to be friendly and polite to others at all times.


We believe in the importance of exercise and diet which go a long way to providing a better life for adults with autism.   The Academy for Adults with Autism has much to achieve in its ultimate goal of a residential care of a high standard in order to support the person with autism and relieve their families of the burden of coping with the daily needs that autism demands.  Assistance with fund raising and any other areas of need are most welcome. 

Please contact us via our website. Visit our website 
www.adultswithautism.org.za

                                           “A BETTER LIFE FOR ADULTS WITH AUTISM”

Sunday 5 June 2011

Welcome

This blog is established for all who are involved in Autism. We encourage all to comment, add your voice, share your experiences and encourage others to speak out about their frustrations, up and downs, lows and highs! and also to identify their needs with regard to a family member on the spectrum.

In South Africa, the government do very little to support those with autism especially in their adult years from 18 years of age and up. If  parents are lucky to have their children with autism attending a special needs school up to the age of 18, parents and family, are then faced with the burden of finding a suitable place to continue their young adult's  life experience, and possibly training in a vocation. In today's world and in most families, both parents have to work, leaving no option but to employ a carer to look after the young adult. Experienced carers are expensive and scarce, and parents usually end up employing carers with little or no experience, and possibly simply a "baby sitter", who should ideally receive specialised training in the care and handling and understanding of the person on the spectrum disability of autism. Understanding the behaviour of the person with autism is of utmost importance for the person taking care of him or her. The danger, if the carer does not understand the autistic adult, is that the adult becomes frustrated because the carer does not understand their needs and in  frustration could strike out, which  in some cases becomes unfairly labelled as aggression.

If parents can get together and share the cost of an experienced and trained person and establish a situation whereby the adults with autism can become involved with activities that will entertain, occupy and benefit  them throughout the day, giving self-worth and meaning to their lives,  many frustrations and behavioural problems can be avoided and thus parents will enjoy the support that they desperately require.

To take this further, we need to understand the following.

1. How many adults in South Africa are affected with Autism from the ages 16 years and above?
2. How many of theses adults live at home under parent care?
3. Is there a service needed. If so, what type; Day Centre, Residential/Respite Care or Support Group?



If we can get feed back on these questions-  we can identify the need and act, provide and advocate accordingly.


Please give us your feed back...