Our first born child, Liam was developing typically and when I say that, I’m under no disillusion about how he was back then. I remember him vividly as a baby, his eyes following me around the room, I remember the special bond we had, I remember the sound of his voice when he sang nursery rhymes and remember him making us all laugh with his sweet little phrases like “ooh I got a fright!”. I remember thinking any day now he’s going to start talking…but he is 5 years old now and we’re still waiting.
Liam has a positive diagnosis of Autistic Spectrum Disorder
Liam was 2 years old when my Mum, who is a School Nurse, started saying something may be wrong, but it took me another 6 months to spot the signs. I do think his regression took place over a period of time slowly losing skill, after skill, after skill, as we went on holiday over this period and he was doing the ‘okey koky’ on the stage with the other kids. We took him on holiday a year later and he wouldn’t even get out of his pram let alone go near the dance floor!
He started lining his toys up and developed obsessions with routine and objects. Most notably for me, he started making these squeaky noises and then eventually all speech previously acquired was lost, including “Mama” and “Dada”.
The cruellest thing about it is we can’t link it to anything. He had his MMR at 15 months, but had no immediate reaction to this. He didn’t bang his head or fall ill. There is no family history of autism on either side. We were told it’s not a genetic condition and my husband and I are in good health and were just 26 and 28 years old when we had him. I have tortured myself for years over what went wrong. The not knowing why makes it difficult to understand, so I blamed myself!
I developed Post Traumatic Stress Disorder over just being told there may be something wrong with Liam, and the year that followed obtaining a diagnosis for Liam was a particularly dark period both I and my family would probably wish to forget. I set about trying to ‘fix’ him and I wanted my little boy back. I felt like he had been robbed from us and I couldn’t accept it. It was ‘me and Liam’ verses the world at that point. I was extremely angry and I was never of that nature. I had prided myself on being a good person, a good catholic, so I felt I had completely lost my identity and eventually had to seek professional help.
Family and friends get active to raise money for Liam’s therapy
Liam was diagnosed with Autistic Spectrum
Disorder at age 3 years. Autism is a lifelong
developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. For me, it meant all my hopes and dreams for Liam were uncertain,
perhaps even impossible.
With professional help and support from family and friends, I managed to get back to a more stable state of mind and my Husband and I felt we could try for another baby as we had always planned to have two children. However I have since been back to counselling as whilst on maternity leave I tried to tackle my son’s problems with sleep and toileting and fell
back into depression and despair as I couldn’t overcome them. I felt I had no control over his
development.
It was only when I started doing something positive to help my situation that I changed the
direction of my life and my son’s life.
“Kirkby mum Cheryl Joyce’s bid to get Autistic son to talk” - Liverpool Echo, 20th March 2011.
I started looking into Autism treatment and intervention but the costs of therapy were astronomical and not within our means! My family suggested setting up a charitable fund to help pay for therapy costs and 8 of them came forward and offered to do a 10k run.We set up ‘Time to Talk Liam’ and our plight was picked up in the local news. Suddenly we received an outpouring of support, offers to help raise money, understanding and encouragement.
This was a much different reaction to what I was getting when I was wallowing in despair! Most uplifting was when I received a lot of messages from other parents who were struggling who said they admired my hard work and dedication and I had inspired them to help their own child. I became overwhelmed with the support and generosity of others which I struggled to accept at first. I wasn’t comfortable with accepting charity and couldn’t understand why people wanted to help Liam. But it wasn’t long before we started to see major improvement in Liam as a result him receiving Applied Behavioural Analysis (ABA) therapy and I realised how crucial it was to have that support.
Liam and his cousin Eva who is the same age. Liam is starting to socialise with his peers.
ABA is a form of behavioural therapy which
uses motivation and reinforcement (reward) to get Liam to conform and be able to concentrate on simple tasks to assist with his development and education. To us, Liam’s family, ABA has given us hope and a way to engage with Liam.
After 2 years of silence, Liam has started to use words again. It quickly built up from 10
words to 100 to 200+ per day. He now makes about 50 verbal requests a day; most of these are 2 word requests. He’s also able to interact and work with different adults and more recently is starting to enjoy engaging with his peers. He’s like a different child and he’s been receiving a lot of recognition at school.
ABA is the most expensive form of Autism treatment. Typical ABA programmes can cost families in the region of £20,000 per year (source National Autistic Society). We are a simple, hard-working family of four; we don’t have those means at our disposal. We are under a constant battle and pressure to continue to fund his therapy (more so now we know it is helping him). We set up a volunteer after school programme with local University students as a cheaper way to access therapy and we paid the ABA therapists to come out every 3 weeks to train the volunteers and Liam’s school teachers.
In April 2012, after 10 months of gathering the evidence ABA does in fact significantly aid Liam’s learning and development; we successfully secured funding from the Local Education Authority for 12 months during term time only. We are extremely grateful to Knowsley Council for recognising and rewarding all our efforts and this could not have been possible without the amazing support we received for Time to Talk Liam.
We are continuing our fundraising efforts to fund an ABA programme for the summer holidays (as it’s important to ensure continuity) as well as funding other therapies such as Sensory Integration to help with Liam’s sensory processing difficulties and biomedical treatment to treat underlying medical issues which are hindering his development.
Time to Talk Liam also aims to raise awareness of Autism and we are also providing assistance to other parents who are struggling to access early intervention and hope by 2013 to take Time to Talk Liam to the next level to expand into a registered charity to help fund early intervention for non-verbal, autistic children.
Since we started Time to Talk Liam, Liam has come on leaps and bounds in just the short space of time of introducing ABA in July 2011 and this wouldn’t have been possible without the help, generosity and support of people who have donated or fundraised for Time to Talk Liam. We hope and pray we will continue to deserve the support of others for all our efforts!
You can follow Liam’s progress and find lots of supporting information on our website www.timetotalkliam.co.uk or if you would like to know more about Autism and ABA
Therapy or would like to donate or help with fundraising, you can get in touch by email to Cheryl Joyce, at timetotalkliam@btinternet.com
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