A couple of weeks ago I had the opportunity to talk about my experience of being a mom of 3 children (young adults) with Autistic Spectrum Disorder.
I was asked to tell my story at the Transforming Children’s Lives event in Dudley on Friday 20th April.
I must admit I was terrified because I had never spoken in front of that many people before (approximately 150) but I wanted to get some of my experiences and views heard.
I was interviewed on stage by Claire from Dudley Voices for Choice and had 15 minutes to tell our families story, where I think services have got things right or wrong, and how important it is for different organisations to work together with families.
I talked about some of my family’s history and how I have had to fight for support while my children were little and since they have approached adulthood.
My family reached crisis point a year ago and although I was in a bad place I was lucky enough to have contacts at DY1 building as one of my children is a trainee at Lunch on the Run, which has been a real support network for me.
I knew Sarah from DVC, who are also based at DY1. One day last year, Sarah witnessed one of my lads have one of his worst meltdowns ever. This led to Sarah signposting me to Nicky Burrows from Children’s Services at Dudley CVS who was able in turn to signpost me to many services including people from Phase Trust, education and housing services who have now been able to find us alternative housing following being subjected to antisocial behaviour at our last property.
This experience made me feel amazing, in fact…liberated. I surprised myself that I had the courage to speak to a room of people from services that can potentially make a difference to other children’s and families lives in the future. I really hope that the people there heard what I was saying and continue to listen to other parents because we, as parents, know more about our children than any other person or “professionals”.
When a family is crying out for help they need to be listened to immediately. One thing I’d like people to take away from what I said and improve is that services need to react quicker if they are to make an impact on families lives and to prevent a crisis from occurring in the first place.
Also, families need to be treated as a family…as a unit, not individuals. Yes, people within that family may need separate services and treatment but people must remember we are families. This is our lives. Things don’t go away for us, ever.
Life is much better for us now, but we are not suddenly ok. We are still seeking support due to “criteria” based brackets, particularly age related or time restricted provision which should be offered in a more individual way.
My support network at the moment is Lunch on the Run and Dudley Voices for Choice, both adult services for my 17-year-old boys and this has been the case for a few years. The Crestwood School has also been a massive support to both me and my boys.
One last point I would like to make is when a family is in need of help and come to one service, don’t just leave it at that one service if you can see we would benefit from other services, refer us or sign post us in the right direction – don’t just open 1 door, open them all!
There is still a lot I would like to say to people, some things were not appropriate for this event, but I would like to have this sort of chance again to speak to people about other things.
But it was a start.
I already feel better in myself for speaking up in front of so many people from different organisations and talking to people after it who said they found it really helpful and made them think what they can do to keep improving things.
By Diane Williams