I literally went from being a carefree punky individual to having my world morph into a parallel universe. At the beginning, it felt as though no one understood what we were going through as a family or really cared about it.
The simplest of daily activities were a struggle, I spent a lot of time at home as I couldn’t work out what the triggers were, and my knowledge of neuroscience was zero.
My eldest was struggling with school and experiencing social fallouts, I now know this was down to his ADHD.
My two youngest were blowing my mind daily due to their autistic traits and before it even had time to sink in, my life unravelled into wait lists, specialists, doctors, community paediatricians, health visitors, read this book, go on that course, tick that box, jump through this hoop and oh find the money to go private for certain assessments. I was overwhelmed, never had I imagined this scenario nor in all honesty did I think I was cut out to be a mother to a neurodivergent child, let alone three!
But, once it did begin to sink in, with a lot of soul searching, self-reflection and re-evaluation of every aspect of my life it slowly began to be manageable. I went on every course suggested, read every book and asked for help, a lot! I said no confidently to things that weren’t right for the boys, I adapted our home and lifestyle to create a safe bubble for them to flourish. We soon worked out there were minimal meltdowns in secluded environments so now spend most of our time in a forest or a beach at the crack of dawn, come rain or shine.
Our biggest struggle currently is school, all three in mainstream and it’s not a vibe.
I have now deregistered the teen as he simply hated it and I needed to trust him and support the next chapter of his life. So far so good!
My 6-year-old has an EHCP and is in school less than 2 hours a day on a reduced timetable, in a brilliant mainstream school that can no longer meet his needs. We are fighting to get him a place in a specialist setting, his EHCP is up for review in the Summer and meetings with SENco start next month to build his case. Bring it on!!
My 4-year-old also has an EHCP, also on reduced school hours and doing okay on the surface, but doesn’t eat in school, will only go to his 1-1 and refuses most activities.
Being a mum to three neurodiverse boys, it is hard work and there are still challenges.
However, it is fun, so fun! We have the best adventures and explore places around the country I had never even heard of before.
Their unique ways make me giggle daily and I feel so lucky and proud to be their mum. From feeling at the beginning that I wasn’t going to be able to give them the support they need, to now, fully believing that there is no one else on this planet that can do it better and actually, absolutely loving it!
We have the best; most fantastic neurodiverse life and I wouldn’t have it any other way!
When I was asked to write this blog; I wondered what to say and the message to portray.
I remember, at the beginning of this journey, when it felt like my life had crumbled and I had no idea what I was doing I really needed support, tips and autism hacks, I needed all the knowledge I have now. Every day still has its challenges, there is never a dull moment, and I am exhausted, pretty sure one day my eyeballs will fall out of my face, drop on the floor and roll under the sofa.
But for now, they are still attached, so let’s go…
Here are some of my autism tips:
Trust your instincts, you know your child better than everyone
Keep a diary of patterns of behaviour
Play detective and work out what the emotional and physical triggers are, then you can avoid or put things in place
Record video snippets to help you understand or show professionals
Get organised and start storing letters from doctors from the beginning because there is a lot of them
Don’t be offended when they suggest a parenting course, these are a portal to meet other parents in the same position and become more knowledgeable about your child’s brain
Free online courses on Eventbrite
Charities such as Add-Vance & Space
HANS More Than Words course
Apply for DLA, CA and Blue badge asap!
Take each day as it comes
SEN parent friends and people who just get it are worth their weight in gold.
Zones of regulation
Zones in the home
This is a huge one for us, being able to spot moods/triggers, support them in self-regulation and assist them in finding a separate space to do so that doesn’t trigger their sibling.
Creating a space to nurture each child’s needs individually, having multiple children needing 1-1 support, getting that extra pair of hands in, ask for help.
Pyjamas days are the best days!
Activity mealtimes, take the pressure off for fussy eaters and make it fun
Strip back social norms and really focus on what works for your family, do that and don’t care what anyone else thinks
Sensory bits: We can’t live without play doh, neon lights, bean bags swings and weighted blankets!
Oh gosh, seamless bamboo socks for sensitive toes
Buy shoes one size up also helps with sensitive toes
Use your own experiences growing up to help mould a safe bubble at home, what did you like or dislike, recreate some of these and see if they work
Record a two-week sleep diary and request melatonin for those night owls
Micro Scooters for little legs that struggle walking, perfect mobility aid
Make time for you, space away from your children allows you to recharge and come back rested and stronger
Look after your mental health, easier said than done, but try to increase those natural endorphins, cardio, meditation, good food and my favourite tattoo therapy!
Ask your GP to refer you to be assessed too, it is very like that you are neurodiverse as well
Accepting that you have a disabled child and celebrate that, go for it and let it mould you into being the most incredible parent. You are amazing!