Support groups...

During the past six months I have attended three support group meetings with a staff member from Epilepsy Queensland.   

One morning I have coffee with a group of women in a big shopping center.  We talk about daily event – visits to doctors, trips to shopping centers, children and outings.  These conversations are different to the ones I normally hear. 

“Last week “Joe” had a tantrum in the supermarket.  The flashing lights were upsetting him.  A woman started abusing me, telling me to control my child.  I couldn’t be bothered explaining his condition.  I just asked if she would like to take him home for a week and see how she felt then.” 

“Last week I took “Jack” who is now 15 to the specialist .  The doctor told my son that he would start weaning him off  his medication  so he could get his driver’s licence.  ‘Over my dead body’ I said ‘ He can’t read or write.  How is his going to drive a car’.  Ever since the visit “Jack” talks daily about getting a car and driving around. He is driving me nuts”   

The women talk of their social life or lack of it, lack of money, the advantages and disadvantages of having  children in special schools as compared with “normal” schools, of lack of understanding and prejudice in the community about their child’s behaviour, how many seizures their child is now having and lack of sleep. They are all single mothers, a not uncommon scenario for women who have a child with special needs. 

I attend another meeting – a farewell morning tea for a staff member.  I am advertised as the “art therapist”.  I walk into the space and meet a group of women and children of all ages.  Three boys are sitting in separate “time out” spaces.  They don’t want to be in the room.  They want to be outside in the park.  I explain the postcard project to the parents.  “We are gathering stories of hope and inspiration” I say.  An older woman says that there are no stories of hope in her situation.  She doesn’t want to think about, talk about or write about her life.  She says that if she started thinking about it she wouldn’t be able to go on. She says she takes anti depressants regularly.  

One mother writes a short story while balancing a baby on her knee and distracting his older brother from the food on the table.  Many of the children have food allergies so arguments erupt between parent and child.  “Why can’t I have the sweets?” “Why can’t I have the sausage rolls?”  “Why, why, why” the children chorus. 

Meanwhile I set up the art table and the children come and go.  After a while some stay and unexpected art pieces emerge.  A boy who loves maths reveals a special talent, a boy draws a picture of his house burning down, and tells me a story about rescuing his mother and brother from the flames, a girl sitting quietly drawing a picture of her dog, and another boy producing his first art piece. 

The mothers enjoy the morning tea and share their daily frustrations with others who understand. 

The third  group are women who have accompanied their partners to a men’s support group.  The mothers, wives and girlfriends sit and share their experiences, and give advice and encouragement to a mother who is attending for the first time. She expresses her delight.  “This is really good.  I understand more now.  I don’t feel as if I am the only one with problems” she says.  She has come to the meeting to borrow some videos showing someone having a seizure.  She wants her son to watch them to show him why she is so scared.  Her motive is one of genuine concern. She doesn’t want him taking risks.  Her son has very few seizures.  His girlfriend of three years has never seen him have one.  He has a job, lives independently and leads an active life.  The other members convince her that it would serve no useful purpose to show her son the video. They think it would be cruel.  They tell her that she is very lucky that her son is so healthy.  She leaves the group happy to have made contact with people who understand her concerns. 

Support groups – a life line to those who attend them. 

Denise Dillon Bolland