“My son Thomas is 4 years old. He was diagnosed autistic around his 3rd birthday. Thomas also has sensory processing difficulties and speech delay, but is catching up quickly now.
Thomas is such a pleasant, well-mannered and happy little boy. Buses are his absolute passion! Whether it’s playing with one of his diecast collection (he has over 50), sitting in the bus stop together watching his favourite number 14 drive past, or carefully turning the pages of one of his many bus magazines, there is usually always something bus related happening in our household!
But with this passion also comes the necessity. Not seeing any buses that day will cause a meltdown, frustration, anger and deep upset. Strangers walking past Thomas during one of these meltdowns regularly comment that he is “acting up” or “being naughty” and this is upsetting, as obviously I do not want to have to explain to a stranger at the bus stop about Thomas’s condition, I just need to do what is best for my son to regulate him.
During an EHCP Assessment, it was found that Thomas also has Sensory Processing Difficulties. For example, Thomas finds getting wet extremely uncomfortable, even the rain causes a reaction of “Mummy it hurts”. The weather is a factor that we have to take into consideration when going on family days out as the rain on Thomas’s skin or even him seeing a drop on his coat will cause great discomfort for him. We have found more recently that Thomas is extremely sensitive to the heat too, with the sunny weather of late causing frustration and unpredictable behaviour.
On a personal level I sometimes feel bad for Thomas (but also I feel guilty for letting others down) for cancelling the trip to the playground with a friend of his because of the rain or not being able to attend the zoo as Thomas can not physically process the amount of people, the loud sounds, or politely declining the invite to the amusement Park as Thomas can not queue. But I know deep down I have done the right thing as deliberately putting Thomas into a situation that will no doubt cause him stress is not fair to him Everyone just wants the best for their children and for them to be happy.
I first became aware of Cerebra on a popular parenting forum when I was searching for help completing forms for Disability Living Allowance. The forms looked very intimidating but once I downloaded the information pack provided on the Cerebra website and used this to help complete the forms, Thomas was successfully awarded the allowance.
Following on, I have borrowed many books from the Cerebra library. Jan the Librarian is so helpful, she has even bought books that I have asked for that haven’t currently been stocked and then let me know when she has them available to lend out. Whilst waiting for Occupational Therapy I have found the books useful as a stepping-stone for me to be active in actually doing “something” for Thomas whilst he awaits his appointment.
I’m very proactive and will read and put into practice as much advice and guidance as possible. The Cerebra library has been a real help as I have been able to put strategies into place with Thomas and our family that I have learned from the guide books borrowed. This has helped in being able to recognise Thomas’s meltdown triggers and therefore being able to avoid that situation.
I have also borrowed a few books written by autistic authors, which has educated me more about the condition but also made me aware that I too have a lot of autistic traits. It’s also made us as a family aware that not all autistic people are the same, therefore one strategy that works well for one may not work well for Thomas. The Cerebra library and website has also been a gateway into reading about other families experiences and positive stories.
The Cerebra toy library has also been a great joy for Thomas. The sensory suitcase really helped as we found that Thomas engaged a lot with the light up toys, especially the fibre optics. He wasn’t too fussed on the fragrance diffuser but then he does have a very heightened sense of smell. The relaxation music was especially helpful at bedtime as it helped him to wind down and it’s something that we have continued to use. The acrylic and bell mobile was also one of the items that Thomas gravitated toward. This suitcase helped us to choose some items and activities to purchase for Thomas that he was actually interested in.
The bouncy lily pad is also another resource that we borrowed from Cerebra and although we haven’t the space for our own lily pad, we have purchased a peanut ball for Thomas as he found the bouncing of the lily pad soothing. We have built bouncing on his peanut ball into his daily routine as we find that this regulates him.
Thomas will be starting Reception at a school for children with Autism and a range of associated communication, interaction, social, imagination, sensory and learning differences. We have had to fight to gain a place for Thomas within this specialist school, and I honestly feel that Cerebra has helped me become confident in appealing for his well-deserved place.
As a family we feel a lot more confident with this transition from nursery to primary school partly because of the guidance from the Cerebra website and its library. This will be a new journey for Thomas and we look forward to continuing it with the help of Cerebra.
Since the Covid pandemic, I have noticed an increased awareness of hidden disabilities and mental health and people actually talking about them to educate others. Cerebra is an absolute hub of knowledge, guidance and support.
Thomas is our gorgeous boy, every day we tell him how proud we are of him. Thank you Cerebra, you’re a part of our extended family!”.