In this article Joanne gives an honest account of her family life and challenges as a mum, who also has autism and ADHD. She explains how Cerebra has understood her struggles and made her feel respected and liked simply for being herself.
My daughters: Ruby-Rose and Jasmine-Lee
“Ruby-Rose (aged 8) loves to dance, cuddle her teddies, do arts and crafts, and attend private tutorials with her geography and maths teachers. She enjoys moving her body, gymnastics, quiet reading spaces and the sensory area I’ve created in her bedroom. She also really enjoys learning about new things, currently including volcanoes, earthquakes and weather systems, and looking after animals. Her sensory environment can easily be too bright, too noisy or too crowded for her, so she avoids busy places and events. She also strongly dislikes non-authentic people, so people who are pretending to be her friend, or pretending to sell something false, she despises.
Jasmine-Lee (aged 6) loves singing, dancing, playing with her teddies and her babies, arts and crafts, and being outside in nature. She is very vocal and likes to move around a lot, so soft play settings and playgrounds are favourites of hers too, as well as lying quietly in the dark in her sensory area in her bedroom when she needs to decompress or to re-regulate herself. Like her sister she avoids highly sensoric or overstimulatory environments, however in a bid to ‘fit in’ with her peers and other children in school she would try to join in and then be distressed for the rest of the day.
Our family life together
Ruby-Rose has autism and ADHD. Her moods vary from one extreme to the other as she learns how to harness her two conflicting conditions – she will be very isolated and retreat into her own little world, and then suddenly be running, swinging and making really loud sounds because she needs to move around.
Her impulsivity and switching tasks without warning triggers her autistic paradigm and then she becomes overwhelmed and distressed directly due to her own uncontrollable behaviours. This results is a real lot of meltdowns, shutdowns and angry outbursts, which always lead to both Ruby-Rose and myself crying and feeling incredibly isolated and misunderstood.
Jasmine-Lee has ADHD and a suspected genetic condition which affects her mobility, body temperature and social integration. She is a very loud child who wants to play and be included in social environments, but she is very often rejected and sometimes punished due to her unprecedented and disagreeable behaviours. This creates intense anxiety and very low self-confidence within her, and she becomes withdrawn, then seeks an argument with her sister or with me as her retaliation.
I am also diagnosed autistic and ADHD, so I know what my girls’ struggles feel like. It’s incredibly distressing because I can only do so much for them, and I can’t simply make these things go away. We experience isolation, rejection from ex-friends and family, and almost a sorrowfulness derived from missing a part of our identity we always believed we would have access to.
Why I got in touch with Cerebra
I was desperately seeking the support of somebody, or of a specific service, who could understand my family’s struggles and our desire to feel accepted in this world. I am highly academic myself and love to educate myself using the latest research and lived documented experiences and therefore having the expertise of Cerebra’s librarian who takes the time to help me choose the perfect combination of resources is exactly what I need.
How Cerebra helped me
I have had such a beautiful experience with very knowledgeable and respectful people. I asked for recommendations with relevant books, both physical and virtual online, and this continues today. Each month I return two books and receive another two. I also accessed the factsheets for DLA applications and financial support as well, and I enjoy reading the research projects too.
My children are also home educated, a decision I made in their best interests with the support of relevant books from your library which have helped me to both fully identify their needs and to identify external support systems that will be able to help me with this. Reading other parents’ case studies and having the ability to access so much genuine information has given me the power to create a curriculum and a new way of learning for my daughters.
Cerebra’s help has made such a difference
Having people who are on my side and actually believe my reasons for asking for support is the best thing for me. I feel seen and I feel heard by people who genuinely want to do their best for me and for my girls. I have been able to access lots of support, on demand, and finally feel part of a community where I am respected and liked simply for being myself.
Please continue to do what you are doing and reaching out to people who need your help. Your support is paramount and has changed my family’s life in so many unwritten and behind-the-scenes ways that I cannot begin to even explain. Well done, and very much appreciated”.
If you’d like some support from our Lending Library, you can find out more here.
Our full range of parent guides and factsheets are here.
