Zoe & Dan’s Story
‘When we first discovered there could be something wrong with Callum, it was an extremely worrying and stressful time for both of us. Callum had a lot of symptoms that were pointing towards him having autism. We both knew in our hearts that something wasn’t right but found it difficult to admit. When you admit something it then becomes real and you have to begin dealing with the issue. Callum would not respond to his name and would have multiple tantrums daily. He could not understand simple instructions and all aspects of daily life were challenging.
We pushed for a diagnosis as we read that early intervention is key. We funded a private ADOS report to assist The Autism Panel in making their decision. Without this we genuinely believe Callum would not have been diagnosed as early as he was (16 months). It was a relief when we received the diagnosis as we now knew what the problem was and we could start researching this and trying to find help for our little boy. My husband was still struggling to come to terms with it all and at times was borderline suicidal.
He started researching autism on the internet which almost became an obsession. It was his way of coping but we spoke at length of the different therapies and theories that are reported on the internet. The therapy we kept coming back to was ABA and this is what we felt would be best to help Callum.
ABA really gave us focus and we were absolutely determined to fund a programme for our son. Unfortunately, an ABA programme is extremely expensive and we were thinking of some drastic measures to be able to support this. Selling our home and all of my husband’s company shares were ideas we seriously discussed as options.
Finding The Playhouse Foundation and being given the grant to support Callum’s ABA programme made us both overjoyed. This relieved a lot of stress and financial worry and we felt for the first time in a long time that there was a small chink of light at the end of a very long dark tunnel. Callum’s tutors have all bonded really well with him and bring a wealth of ABA experience. The consultant uses her experience to guide the team and ensure that the programme is tailored to help Callum develop to the best of his ability.
Due to the intensive structured programse ABA offers, we have already seen a huge difference in the last few months. Callum can now say lots of different words and his interaction with people and his surroundings have improved dramatically. ABA therapy breaks down different aspects of his behaviour into small segments, which give Callum the chance to learn at a level he is comfortable with. When he first started he did not particularly like any form of physical contact and now he even gives us kisses and cuddles which is the best feeling in the world.’
‘When Nur was little, he didn’t talk or show eye contact and was in his own world. However, I didn’t think of autism as I didn’t have enough knowledge about it, not until he became two and a half years old. Our Health Visitor noticed the signs and mentioned that children his age are able to say at least fifty different words.
After receiving his diagnosis, he was referred to NHS Speech and Language Therapy, where the sessions didn’t seem to help. Later on I discovered ABA using YouTube and found out its effectiveness in helping autistic children. However, I realised that it cost too much, especially for a single and full-time mother like myself. So I tried looking for funds that could help me with this, and after months of research I successfully found The Playhouse Foundation, a local charity that funds ABA. I was delighted to hear this and it felt like all the months of sleepless nights of research had paid off! They explained the steps from filling the application to building our team and soon afterwards Nur started his Programme.
In these couple of months of intensive teaching, Nur has done so well with the help of his supportive team. He came from a non-verbal child who easily got frustrated due to not being able to communicate his needs, to a happy child that can request his needs and loves interacting with us. He has said ‘mummy’ for the first time in his life after starting the programme, which is a huge thing to me! He loves each session as it’s all play-based so he learns new words while at the same time having fun.
I can’t thank The Playhouse Foundation enough for this golden opportunity in enabling my son to go from unable to able. ABA is the best thing that a family with an autistic child can get.’
Emma & Mark's Story
‘In the summer of 2016, at the age of 2, Charlie was diagnosed with autism. Even though we knew beforehand that Charlie had autism, it was very difficult and upsetting to hear it confirmed by the Paediatrician. Charlie was non-verbal and we worried that he may never talk. He had no way of communicating with us, leading to frequent tantrums and meltdowns. Charlie would engage in a variety of challenging behaviours including self injury and head banging.
Every day life was difficult as Charlie did not respond to his name, he could not tolerate being in the same space as his sister, he had no understanding of spoken language and demonstrated obsessive and ritualistic behaviour which caused significant stress when not adhered to. It was easier to stay at home as going out was extremely challenging. For example, a family trip to the park would become impossible – instead of playing onthe equipment, his main focus was to open and shut the gates to the park repetitively. If the gates were opened by somebody else, he would have to shut them immediately and couldn’t cope if someone else entered or left the park. It meant that one of us would usually have to take our older daughter out on our own so that she could enjoy the park rather than spending time together as a family; things that families usually take for granted. Charlie could not tolerate other children touching his toys or joining him in his play. His older sister just wanted to play with her brother and it was very upsetting for her to not be able to do so.
We were determined to find a way of helping Charlie. We researched autism online and by luck came across ABA. We then learnt of The Playhouse Foundation; we got in touch with Vicky Stanley for advice. It was inspiring to hear how ABA had helped her own son and other children and potentially what it could do for us. We therefore started Charlie on a specialist ABA programme, tailored to his needs. Once Charlie’s ABA programme had been running for a short time and we could see the clear progress that he was making, we were very fortunate to receive a bursary from The Playhouse Foundation to enable Charlie’s programme to continue. The ABA team work in conjunction with Charlie’s Pre-school, allowing for his learning to be generalised.
ABA has been life changing for both Charlie and us as a family. ABA has taught Charlie to imitate, a skill which is needed to form the basis of learning. Charlie can now understand spoken language, can communicate his needs and has learnt to talk – it is amazing to think that he was non-verbal only a short time ago. It is so lovely to hear his voice; he has even learnt to sing. Now that Charlie can communicate, his self injurious behaviour has stopped. He is now toilet trained, he enjoys interacting with his sister and peers and we are able to go out together as a family – Charlie is such a happy little boy.
As part of the bursary from The Playhouse Foundation, we received specialist help with the EHCP process from Claire Franklin, a very experienced lay advocate. Claire visited us in person so that she could get to know Charlie and ourselves and was helpful and efficient in answering any queries that we had. Claire worked very closely with us and the ABA team to ensure that a strong case was put forward with sufficient evidence to ensure that the ABA provision could continue into primary school. Having Claire’s expert knowledge and advice was invaluable; we would have been completely overwhelmed by the EHCP process without her assistance.
Thanks to The Playhouse Foundation and Claire’s support, Charlie’s EHCP includes ABA provision into primary school – Charlie is due to start mainstream school in September 2018 with his ABA programme jointly funded by The Playhouse Foundation and Hampshire County Council.
We are very grateful to The Playhouse Foundation, Claire Franklin and all the ABA team that work with Charlie.
The Playhouse Foundation are a wonderful charity who really do change lives – Charlie has made amazing progress; so much more than we could have ever imagined.’
‘It was a month before Lena’s second birthday when I stepped out of the Children Development Centre of Poole Hospital with tears suffocating my throat and blurring my vision.
Time seemed to stop, maybe for an hour. Even though I knew that something was not right with my child’s development, it felt like swallowing a razor…A.u.t.i.s.m. It kept echoing in my mind unkindly, painfully and loud.
The first days were more like an angry denial. After researching intensively online, purchasing books about autism and watching videos about autism, I started to slowly go through the stages of grief. Grief for a less complicated life. Grief for a vision of my sweet girl’s independent future happiness.
We were put on waiting lists for Speech and Language Therapy, Occupational Therapy and Portage service. Meanwhile, time was ticking. The more I read of the importance of early intervention, the more I felt the urge to do something. I felt every day without any therapy was a wasted opportunity, a missed chance for progress.
I would spend hours trying interactive play, but somehow I still felt I could not step into my daughter’s space. I could not get her attention, and I was impatient and worried.
Lena was constantly sleep deprived, was enchanted by running water, turning building blocks around 70 times, lining everything up, running around for hours and tearing everything up. In addition, she got extremely anxious and sensitive around other children. She was completely non-verbal. Social life literally stopped despite my best efforts. She started to engage in self harming behaviours and screaming for lengthy periods of time. We had to go to playgrounds at noon or at 7am because Lena loved swinging, but couldn’t cope if children made any noise around her.
Because of her global developmental delay, obsessive behaviours and profound communication difficulties Lena had frequent tantrums. I often brought her home with bruises on her forehead and knew that I needed to make a change in our lives.
Many evenings were spent searching on the internet for therapies and I joined up to various autism parenting clubs on social media. That is when I came across Applied Behaviour Analysis. The more I read about it, the more positive impact it had on me.
I started to narrow down my research and discovered The Playhouse Foundation. It was emotional and familiar to read Vicky Stanley’s heart-warming story about her own son and it touched me.
I will never forget the night I wrote to Vicky. It was just after midnight when I received a positive, encouraging reply from her.
I haven’t ever regretted for one second to be involved in Lena’s early intervention programme. I do not think there is a realistic measure to describe all the amazing improvements Lena has come across since we have been supported by her team at The Playhouse Foundation. I am not saying that all of Lena’s challenging behaviours have gone but I am confident to say that they have significantly decreased. Her every-day life has improved profoundly, including eating, sleeping and being around others.
Lena’s food tastes have broadened substantially. She is now eating meals such as mushroom risotto, when one year ago, she would only eat crisps and biscuits. Sleeping has improved massively and going to preschool is not an issue anymore. She can now say single words to communicate and loves to learn and be motivated!
We still have a few areas to work on but with the consistency of her programme, there is so much ahead of us to achieve.
I can see how hard all the staff and providers at The Playhouse Foundation work to help our beloved children, as they are truly committed and super fun to be around!
Everyone deserves a chance and we are so grateful to have been given this life changing opportunity.’