Berni Gamble
Contributing author
Mother of Joanna

How different her life would be now if it wasn’t for the tremendous work done at the Anne Wall Centre in Barnet; how lucky we were to find it! 

Joanna was born prematurely after an extremely difficult pregnancy. She was immediately taken to the Special Care Baby Unit where I was told on several occasions to expect the worst! 

However, Jo was a fighter and after six exhausting weeks I was able to bring her home. Little did I know that the exhaustion was just about to begin! 

Jo had multiple difficulties which appeared over the next few months and years. Regular visits to the hospital had me labelled as a neurotic mother; however, before Jo was eight months old she was diagnosed with cerebral palsy, hearing loss and visual impairment. Constantly crying and unable to reach any milestones, she eventually was diagnosed autistic at the age of five years. By this time Jo had a younger sister, Claire. Claire’s life has been greatly affected by having a sister with such difficulties. 

At the age of seven Jo was sent to a weekly residential school. I was told that she needed expert help and I trusted the professionals. At the age of 11 she was sent to a termly, supposedly specialist autistic unit, where she was put on antipsychotic medication, because of her self-harming and challenging behaviour! Again, I trusted the professionals and freely admitted that I could not cope with her at home. She never wanted to return to these schools after school holidays and became very distressed. But I was told it was due to her autism, and that she didn’t like change! I admit I wasn’t listening to Jo, I was listening to the “professionals”!

Apart from school holidays, she did not live at home again until December 2003. The events which led up to this and beyond still make me cringe inside and I am unable to share them with you! However, following two admissions to a mainstream psychiatric ward Jo returned home.

For several months, she remained at home with 24-hour support from social services. I travelled the countryside searching for the right placement to send her to again. Advice from all the professionals and now family and friends too were all saying that it was best for Jo to live in a “Unit” somewhere. I could not accept this and felt that after everything Jo had been through she deserved somewhere really special and if that meant being at home a while longer then that’s what would happen.

I remember being told about Sense and the Anne Wall Centre. I telephoned and spoke to someone called Graham. I remember being given a glimmer of hope that at last someone was listening to me about the actual person Joanna, and not the disabled person with challenging behaviour!

After a couple of phone calls I visited the Anne Wall Centre. I was immediately struck by the peaceful environment and way staff interacted with the people at Sense.

Graham came to visit Jo at home and thank God she was having a good day, helping me cook chilli. Food is a great interest of Jo’s! Graham talked to Jo and she responded. For the first time for an extremely long time no one was judging, feeling awkward, or expecting the worst. Jo appeared to enjoy the visit.I remember being told by staff at the Anne Wall Centre, that they try to help the people they support understand the world around them by whatever way they can. Being autistic is similar to being deafblind, because the world that we know is a very scary dangerous place for these people. 

I was extremely cautious, but at some point in 2004 I agreed for Joanna to attend the Anne Wall Centre for a trial period. She is still there today and I am so grateful. The Anne Wall Centre has made such a tremendous difference to all our lives and not least to Joanna’s!

Instead of looking at what Jo can’t do they have encouraged the positives, no matter how small and not noticed by so many people, helping her self-esteem and self-confidence to grow. She has made so many new friends and is accepted for the wonderful person she is. No more medication, Joanna is an independent woman, who is calm and happy. The self-harming behaviour has mostly disappeared (everyone is allowed an off day now and again!). 

The positive changes in Jo are truly unbelievable. The staff at the Anne Wall Centre had not expected her to conform and fit in, but have adjusted their lifestyles to fit in with Jo’s, giving her the security she so needed to understand this weird world we all live in. 

Thank you Sense for getting back a valued life who could have been lost in the care system somewhere and for finding Joanna’s full potential. She has developed into someone I would never have dreamed she could have become. I am lucky to be a mum and I am so proud of both my daughters! May your fantastic work continue for years to come.