Wonderful Women: Mum of three, brain surgery & ASD
- Although we are ‘Mummykind’, put being a ‘Mummy’ aside for a second and tell us about you!
Hello, I’m Rachel. I’m currently not working because I’m recovering from brain surgery. I’ve been working on some minor home improvements as I let my standards slip a little bit when I was poorly! I enjoy gardening, spending time outside, looking after my small menagerie of animals and enjoying the company of my beautiful granddaughter!
- How about your children? How old are they, what are they up to?
My youngest is 13 and in Key Stage three at school. Then we have my 20-year-old son who is off to University in September, where he will study Urban Planning. My eldest is nearly 24 and a Mummy to my Granddaughter, she enjoys writing and promoting Mental Health awareness.
- What are your favourite and least favourite parts of being a parent?
My favourite part of being a parent is seeing my children genuinely happy and succeeding. I love the relationship my children and I have. When all else fails, I know I can depend on my little family and they know they can depend on me. They all have a fantastic sense of humour and there is honestly never a dull moment when any of us are spending time together! My least favourite part is when my children are ill, especially when I nearly lost my daughter when she was giving birth and also when my youngest had severe viral encephalitis. It has also been awful seeing my children being bullied to the extent it has impacted their mental health.
- When did you first consider that your youngest child was different?
When he had just turned two, he suffered multiple convulsions that lead to a prolonged period of him not being able to breathe. After this period of ill health, his character and behaviour completely changed. He was still our little boy, but he wasn’t quite the same anymore. The specialist said that the period in which is brain was shutting down could have well have led to cognitive changes, causing ASD.
He started to stare at the washing machine as it spun around. If he was ever in a small space, he only ever wanted to escape – he’d run into walls and try to climb out of windows. He was sensitive to sound, touch, to having too many people around. We’d have to cut the tags out of his clothes, including his pants and socks. He was withdrawn and easily overwhelmed.
- How difficult has it been to get him the help and support he needs?
It has been virtually impossible to get him the help he deserves. Despite showing typical signs of ASD and related disorders, he wasn’t diagnosed with Autistic Spectrum Disorder until he was nearly seven years old.
Getting that diagnosis took continual visits to the GP, countless visits to our local specialist, support from his primary school and other trusted people’s supportive documents. He has been declined 5 times for a Educational Health Care Plan (EHCP) as he isn’t “Autistic enough” despite being “too autistic” for mainstream school, according to his specialist provision at school. He has many struggles with not only ASD, but ADHD, APD and even some aspects of Tourette’s (to name a few!) – but he is high functioning, which hasn’t helped at all with his EHCP.
- Describe a typical day to us? What are your biggest daily struggles? What are the highlights?
Mornings are so stressful – we have a minute by minute system of what we need to do to get him out of the house on time. It has taken 18 months of almost literal blood, sweat and tears for us to find a routine that works for him. We face multiple difficulties like him struggling with shoelaces and his tie because he doesn’t like how it feels. His anxiety levels are so high that he can’t get the bus to school, so he must be driven. He is almost done with his second year and still not doing a full school day.
He has started doing more mainstream lessons as he prepares for his GCSEs. The highlights are when he comes home happy, when he has learnt something new that he’s excited about. He does so well academically despite his difficulties that in most subjects he’s on the same level as his neurotypical peers. He is really interested in Physics and has a keen interest in space… hearing him talking about something he is passionate about makes me so proud.
- How has the past year been for your family?
It has not been the easiest of years! This time last year my brain condition was affecting how I thought, how I walked, how I talked – I was using a stick and wheelchair. I wasn’t myself at all. I had surgery for this at Kings in December and I’ve been recovering well since! I am so thankful that I had that surgery done when I did, it’s been life changing.
My husband had a DVT which lead to a life-threatening DVT pulmonary embolism, causing permanent lung damage – he’s been placed on medications for this and since then he’s been much better.
My son’s specialist unit at school has closed, so we’ve been in lots of meetings regarding a new smaller provision that is being piloted. We’re hoping this works well for him and helps him feel secure enough to continue to achieve.
There have been so many mishaps and incidents – I’m just thankful to have my family and my dogs by my side!
- How have you managed to cope? What do you do to unwind and relax?
My family inspire me to keep going, as I said before, when all else fails, I still have them, and they have me. We try to get away on holidays whenever we can. I love a good soak in the bath, or a cup of tea and a chat. You can’t go wrong with either of those!
- What hopes do you hold not only for your youngest child, but for your whole family?
Understandably my youngest causes me the most concern, above all I just want him to be happy on whatever path he chooses to take. School, work, college? If he’s happy and fulfilling his potential, I couldn’t be happier! I hope my eldest son does well at university and enjoys his chosen career. I hope that my daughter finds an answer to her many medical problems, so that she can live a happy and healthy life with her little girl. After all, I believe the most important job in the world is brining up happy and healthy children.
- Do you have anybody you’d like to nominate for our Wonderful Women Wednesdays?
I’d like to make a couple of nominations, if that’s okay? Firstly, Maria of Mummykind – I admire her fight to save the world for future generations. She is an excellent influence and recently won an award for her green thinking! I’d also like to nominate my Mother, Angela for a different perspective on parenting and to incorporate and include ladies from a further range of backgrounds.
Do you have anyone you’d like to nominate for our Wonderful Women feature? Let us know!