OJ’s is a registered charity in Lancashire, UK and we provide activities for children and adults with autism, learning difficulties and associated disorders. Our family days are based at Hillside Special School in Longridge (PR3 3XB) and adult sessions at Grimsargh Village Hall (PR2 5JS). At the moment we are also trialling a Play Group for families who have a child under 5 years old who has or is going through a diagnosis.
We have sole hire of settings to enable us to meet the needs of those attending and to differentiate activities appropriately. We welcome the whole family and encourage siblings to attend and join in the fun to give the whole family a positive experience.
My name is Lisa Donoghue and I set up the charity after experiencing problems with accessing mainstream/public areas with my child who has autism, called Oliver, and my other 3 children. When my two youngest children were babies I came across many difficulties in getting out and about and would resort to staying at home. I would only tackle trips out that were most urgent when I was on my own with the children.
This resulted in me becoming isolated, probably not ‘fitting in’ in the mainstream playground and feeling very different from others. Let’s face the facts, how could I speak to others about dealing with a non-verbal child, choosing a special school, upsets, meltdowns, siblings, running away, the whole picture….how could I even do that?
A few things stand out to me about our ‘journey’ so far. Like the time Ollie was meticulously lining up carrot sticks at a family event, hardly noticing other people there, and a family member said that ‘he didn’t look autistic’ and ‘lots of children do that’. When Ollie was struggling in a doctor’s surgery and the Doctor asked if I could ‘shut him up’ because he couldn’t hear what my daughter was saying. When we attended a special needs dental appointment and Ollie had to have a Teletubbie toy with him for me to get him there which made noises, and the assistant told me to turn it off because she couldn’t concentrate. When a mainstream mum was shocked that I said I was accepting that Ollie wouldn’t drive a car, go to Uni, get a job and always need care, saying she thought it was awful that I was ‘dumbing him down’.
There is more but it’s too much to dump in one place and I know if you are a family like mine, then you know exactly what I am alluding to. There are many instances that have made me so upset in that past and given me the drive to try and make OJ’s a success.
I would find that some people would not have patience with Oliver which would understandably cause upset within our family. I would be constantly aware of people’s reactions to Ollie and if my other children, 2 who were babies at the time, became upset for any reason, then Oliver could become extremely distressed at the noise they were making and scream loudly, becoming very anxious. To the bystander who didn’t understand his disability this would have looked unusual behaviour for Oliver’s age. That would be it, everyone upset, trip cancelled and in the car for another drive round. It got so stressful that during the holidays and being on my own with the children, I would pack a few treats and take the children for a drive, and that would be it….just a drive round and then back again.
Oliver is now 22 and a young man which brings a whole new scariness to this autism life we have in our family. I have met many people over the years through having children….in the primary school playground, children’s activities, etc and it has been difficult at times to ‘fit in’. With that I mean sometimes people don’t ‘get it’, this autism thing, and friendships can become strained or awkward. I say this without any malice to anyone and I think if you are an autism mum you may understand.
When autism throws challenges your way you retreat into your autism family life so that you can cope. I think sometimes that must look quite unfriendly but it is needed, and some people would not understand your reaction. There are many mum’s evenings, couples get togethers and general social occasions that you miss out on. That may be through less and less invites due to you always having to decline or the fact that you just cannot go as there a very few, if any, people who you can call on to look after your child.
This situation results in isolated families due to the misconception of autism. Autism is a ‘hidden disability’ and one of my favourite sayings is ‘If you have met one person with autism, you have met one person with autism’. Some of the worst things you can say to us autism mums are ‘Is he like rainman?’, ‘He doesn’t look autistic’, ‘Bet he’s really good at maths and art’. Autism can be very misunderstood and I aim to make a difference and raise awareness as much as I can through OJ’s.
If you are reading this and you have a child or family member with autism, I’m sure you know what I am trying to get at? It’s not that everyone who you meet is not tolerant of our children, but it’s sometimes the stress of what you feel is going to happen or what has just happened, and how on earth you are going to calm it all down.
We really welcome contact from new families, siblings can attend and carers are welcome when looking after children or adults.
I am always happy to speak with other parents who experience similar stresses….it’s always good to talk.