I’m 43 (but still think I’m 21 at times), an only child, the chairperson of Autism Support Crawley, an autism ambassador at London Gatwick Airport, a governor at Manor Green Primary SEN School, a wife to ‘Cookie’ (whose real name is Lee, but only his Mum calls him that, or me when he’s in trouble) – but my most important role is mum to Ryan.
Ryan is 11 and has profound autism alongside associated learning and sensory processing difficulties. Ryan is my best mate and sidekick as we bust boundaries together to raise awareness and understanding and we make much-needed changes out there in the community.
I knew very early on, before he was 6 months old, that Ryan was clearly very different to other babies we would meet with at ‘Rhyme Times’ and other Mums/Babies groups. He did not want to participate in any form of interaction at all and would become extremely distressed when we tried to encourage him. I soon saw a lot of repetitive behaviours creeping in and obsessions with anything yellow, even at such a young age. He was not hitting the developmental milestones either, like sitting up. In fact, he never even crawled; I just had a commando little person instead.
I kept being told: ‘Oh he’s just a boy, he’ll catch up.’ But I knew different. I already had a gut feeling Ryan was autistic. Then came the dreaded ‘two-year check’. I found out beforehand what would be asked of him and I knew he couldn’t do any of the tasks required of him – naming body parts, building a tower of bricks, etc. He spent the entire session just circling the perimeter of the room, opening and closing doors and drawers. His developmental levels were that of a 6-month-old.
As a ‘straight A’ student, I could not understand why my son was so way behind and that was the moment I experienced the ‘grieving process’ that hits all parent or carers at some point in our journeys.
We aspire for our children to perhaps be nuclear physicists or brain surgeons and when the realisation hit me that Ryan wouldn’t be and that he would need some form of care for the rest of his life, I completely fell apart. I spent two days with the curtains closed, and then I picked myself up and became the determined warrior I still am today to get the best support for my child possible. The mandatory hearing tests showed he had extremely acute hearing. Two months after the disastrous developmental check I had an appointment at our local child development centre with a paediatrician. I’d already been researching autism and could quite clearly see that Ryan ticked all of the boxes and so was prepared for what the doctor confirmed.
After just 45 minutes I received the diagnosis and I was so happy. It cemented what I already knew and proved that I wasn’t a rubbish mum who didn’t know how to bond with her baby. I left the appointment with only a leaflet about autism and a referral to a portage service; I was cast off into the abyss with no other signposting. Yet, looking back, I consider ourselves so lucky to have got the diagnosis so quickly as the pathway has certainly radically changed in those nine years.
I now know that everything in our lives is a fight, but I had no idea at the time just how difficult ‘the system’ was, and still is, to navigate. Ryan’s DLA (Disability Living Allowance) got turned down; I appealed. It was awarded, but not at the right level. I appealed; it was turned down. I went to tribunal and I took Ryan with me as they needed to see just what I having to deal with. He totally trashed the meeting room, broke a laptop, attacked me, and fell apart in my arms.
The decision was overturned and Ryan was awarded his DLA correctly at last. But I had to put my son through that trauma. I was never going to give in or give up though. I had a similar problem when I wanted a ‘Statement of Special Educational Needs’ for Ryan (now known as an Education Health and Care Plan). It was so obvious that Ryan would never be able to access mainstream education, but I was told to let the ‘system take its course’. No, that wasn’t good enough for my son, so I took the local authority on and fought and fought. I got the statement and got Ryan into the SEN nursery/primary school where he needed to go and we have never looked back. The barriers and fights are always going to be there, but I’ll continue to meet them head-on as only the best is good enough for Ryan.
Autism Support Crawley was formed in 2007 and I took over running it in 2011; we formalised it as a support group in 2012 and I became the chairperson. Dr Anna Kennedy OBE became our Patron in 2013. After another struggle, we finally became a charity in 2018. We are a completely voluntary parent- and carer-led support group for parents and carers caring for someone with autism or social communication difficulties, with or without a diagnosis, across Sussex, Surrey, Brighton and Hove, Kent, and Greater London borders. We have over 1,500 members, who access our support via several means. We have a mailing list and public social media platforms and also a closed Facebook page just for parent and carers to give them a safe platform for peer support and signposting.
Prior to COVID-19 we also ran coffee mornings and evening meetings; hosted high-profile guest speakers; and hosted respite events for our parents and carers, family gatherings for the whole family and an annual conference. We hope to be able to resume all of these in the near future when it is safe to do so appropriately as we really miss seeing each other. I’m currently doing a weekly check-in live video on our closed Facebook page just to try and reach out to people.
I am also so very proud to have been a founder and a huge champion of the Hidden Disability Assistance Programme, more commonly known as The Sunflower Lanyard Scheme. I started forming this life-changing programme just over seven years ago with some brilliant people at Gatwick Airport and it was officially launched in May 2016. The scheme helps anyone with a hidden disability such as autism, ADHD, Tourette’s, dementia, wearing a stoma bag, etc. to have a positive experience through airports, supermarkets, banks, sporting venues, and lots more; by simply wearing a green lanyard with sunflowers on, a wristband, or a pin badge or ribbon, which is a subtle marker for staff to realise that person or someone in the party needs some extra support and it has spread internationally.
COVID-19 has seen us having to adapt to a new ‘normal’ extremely quickly and without much warning. Thankfully, Ryan hasn’t the cognitive ability to understand what is going on or how horrific things are out there and for that we are grateful. He has adapted brilliantly to his new routine apart from the ‘home learning’ side of things and so we just try to do one form of ‘learning activity’ a day to engage him. Ryan is the ‘King of Compartmentalisation’. Home is home, and school is school.
The apps and activities he loves at school send him into such a heightened state of anxiety and stress if we try to introduce them here at home, so we have really had to think outside the box to use his ‘enthusiasms’ such as Stormtroopers, to get him to do some work. Thankfully, his amazing teachers all recognise this and totally ‘get’ Ryan and his complexities.
For Cookie and I, it has been really quite hard at times. Cookie is my absolute rock; he is Ryan’s best mate. We are such an incredibly close family, but being stuck together for all of this time has been quite a test. We are safe and well, but we do drive each other mad. I really struggle with Mondays; every Monday is an inset day. My head finds it so hard to switch from ‘weekend’ mode to ‘weekday, school day’ mode, but we have to keep weekends as weekends, so Ryan knows the difference.
One day just rolls into another right now, doesn’t it? Cookie is self-employed in the construction industry in London and chose not to work from 24 March 2020 as it was just too dangerous even though the building industry has never shut down. His anxieties have changed from the usual life stresses from our previous ‘normal’ of having to commute very early in the morning, securing clients, etc. to then come home and rush around here as well and help with our charity face-to-face evening meetings. Now the stresses are how he feels about the future and having to return to that environment at some point soon.
He has actually been very happy at home cracking off the jobs on that never-ending to-do list that we all have. As much as Ryan is stable right now, we fear for his emotional well-being when it comes to Cookie returning to work and for him returning to school because of the separation anxiety which he has always struggled with.
Ryan has been stuck to us like glue since 20 March 2020, and he will miss Cookie so much and not want to let me go either. Even though he is in Year 6 with an EHCP, I am not sending him back to school just yet. Ryan is the only child I’ll ever have and he is too precious to us and to our community, and I’m not prepared to let him be a crash test dummy to test the new regime.
It’s so important to look after our emotional well-being, more so now than ever, and last week’s Mental Health Awareness Week has been a timely reminder of this. Please remember that it’s OK to admit you’re not OK. It’s OK to ask for some help and support. It’s OK to say: ‘I’m not doing this today’, as tomorrow is another day and will be better. It’s so common and understandable to let one negative thing ruin your whole day when perhaps some lovely things have happened too. Try to hold on to those positives.
When I’m having a bad day, I will clear my diary, make apologies, and just come home and shut the world out for the day and that’s OK. The next day I am back up fighting again. Right now we fill our lives full of music, dancing, and trampolining to keep us all happy. Just do whatever you can to make yourself smile. Video calling is so important right now. Please do not suffer in silence.
Anna asked us how we feel about the future. Puberty is looming and it fills me with dread and anxiety, but we cannot change it. It’s going to happen regardless so we’ve just got to embrace it. Shaving – that’s a ‘blue’ job for Cookie! Ryan is still in nappies and will be for quite a while I suspect. The thought of changing a nappy once things start changing scares me, but I haven’t got a choice and I will be OK.
Child trust funds were a total waste of time and complete oversight for those of us with children who cannot manage their own affairs. Can you imagine having to shell out anything from £365 upwards to secure a deputy order from the Court of Protection just to gain access to possibly only £250? Thank goodness our friends at Renaissance Legal have highlighted this pitfall, which affects over 78,000 families. Please click here for more info and to sign the petition to change government legislation.
Adult services – well, I can’t wait to fall into that abyss. Not. That will be one of my next projects to right the wrongs there.
What happens when we are gone? I fear for Ryan when Cookie and I are no longer here. How will he ever understand he won’t ever see us again? Who’s going to care for him? Where will he live and how is that funded? It is so important for people to secure the future of the people they care for, even though it is so hard to think about. We have set up a specialist will and trust for Ryan to protect his inheritance. If we didn’t, then the Local Authority would force any property or financial gain inherited to be used to offset his care. How is that fair when Cookie’s other two children from a previous marriage, Liam and Sophie, can use their inheritance however they wish? It’s a disgrace and another loophole many don’t know about. Again, we turned to our friends at Renaissance Legal to set the will and trust up to protect our assets.
The team there are incredible, so knowledgeable about our needs and want the best for us, and they are endorsed by Mencap as well as the National Autistic Society. Too many solicitors out there say they can make appropriate arrangements, but I know they can’t. If you want more information, please get in touch with Renaissance Legal.
Thank you for taking the time to read this. Please remember you are doing an amazing job. The bad days are bad, but the good moments will far outweigh them.
It sounds a bit of a cliche, but Ryan is my life. He has made me a better person and shown me what I need to do in life. I wouldn’t change him for the world, but I’m certainly changing the world for him.
Editor’s note: You can listen to Maria Cook’s interview on ‘All Things Autism‘ at Women’s Radio Station.