My clever girl received her level 2 certificate in Outdoor Education.
The key word here is Education!
Yes, Jasmine QUIT school but school is a place – a place that follows a specific system and it is not the only way to gain an education!
Most people associate the word QUIT with failure – and that is why so many people believe they are a failure.
Here’s the truth –
You cannot QUIT without having tried!
And trust me those that QUIT are the ones who have tried the hardest!
Of course Jazz could have stayed in school and continued to have the love for learning squeezed out of her.
Of course Jazz could have stayed in school and struggled academically in every single lesson.
Of course Jazz could have stayed in school and spent 6 hours a day reinforcing how much she struggles, knowing that everyday she is falling further and further behind in their fixed curriculum.
Of course Jazz could have stayed while her confidence and self esteem was crushed piece by piece.
Of course Jazz could have stayed in school and taken 10 plus GCSEs to receive fail grades come next summer, knowing she will never revisit the majority of subjects ever again in her life but have to resist Maths and English in college and be forced to take a lower level college course because she never made the grades.
But for what?
“Because that’s just what KIDS have to do! KIDS have to go to school!”
No – kids must have access to an education! Not only that, they must have access to an education that is accessible to their age and ABILITY!
The only failure here is that of the school!
JASMINE doesn’t equal KIDS!
How do any of those conformist ideologies help Jazz as a person? They don’t!
QUITTING school for Jazz was the best decision we ever made!
To QUIT is to know that you tried and it wasn’t for you.
Don’t continue with anything if it doesn’t serve you.
You get one life! Don’t waste it trying to fit in, do what is right for you.
And remember –
QUITTING is NOT failing! Quitting brings you an opportunity to SUCCEED!
After Aiden’s 3 minutes of fame on the BBC One documentary ‘Cornwall’s Wildest Wave’ which was aired on Friday 20th May 2022, 7:30pm, (and can be rewatched on I Player), I thought I would give you guys a bit more detail about how incredibly powerful the ocean has been for Aiden.
Just to recap for those who are new to my blog, Aiden is 22, awesomely autistic with a Pathological Demand Avoidance profile (PDA), has learning disabilities and also has cystic fibrosis.
Since Aiden was born he has always loved being submerged in water and we always joked he would have made an incredible whale. By the time Aiden was 3 he could swim without armbands and even now he is much faster in the water than he is on land.
We were told being near the sea would help his cystic fibrosis by replenishing his salt levels. So Aiden started surfing as soon as we moved to Cornwall, aged 11. He joined the Wave Project, a charity founded by Joe Taylor, that takes children surfing to improve mental health and well-being, but for Aiden it did much more.
Aiden took part, and was a finalist, in the first ever ‘Summer Surf Challenge’ which at the time was a surf competition for young people with learning disabilities. In fact, sadly, this has been the only surf competition to include those with Learning Disabilities in Cornwall in the last 10 years.
But this is where Aiden met Tom. Tom Butler (Tommy Butts) is an ambassador for The Wave Project, he is also a professional big wave surfer – if you’ve watched the documentary you’ll have seen just how crazy he, and those big waves really are. But more importantly Tom is the founder, along with Adam Griffith and Pablo Sisca, of the brilliant CIC – Coastal Crusaders
Coastal Crusaders was founded in 2019 with the aim to educate, create social environments, integration and advancements to levels of health, fitness and social interactivity. And I am so very grateful for their existence.
Thanks to the team at Coastal Crusaders Aiden spent his first year with them building a relationship and learning to trust them while continually learning how the ocean works, improving his surfing technique, building his fitness and spending much time in the waves, to relax and regulate his emotions.
The freedom the ocean brings for Aiden enables him to feel in control which lessens his anxiety and this meant he could be himself and remain in a calm mental state to learn.
Trust and relationship is everything when it comes to supporting someone with PDA and Aiden is no exception. Without this you’re wasting your time.
The bond with Tom and Tariq (Another one of Coastal Crusaders awesome surf coach’s) was formed and a 2nd year saw Aiden achieve a worlds first! Aiden and his pal, Louis, achieved their ISA Level 1 Surf Coaching Instructor accreditation.
Just to put this into context, so you can appreciate just how hard they worked, for you non- surf dudes out there. The surf coach instructor level 1 award is normally achieved after a 2 day theory course, evidence of your personal surfing ability is proven and 20 supervised surf coaching hours are completed.
And to reiterate, Aiden and Louis both have learning disabilities – Aiden cannot read or write and has a poor working memory and cognitive capacity. Over learning is the only way Aiden can retain information, so that’s what they did. Time, patience and practice – It took them a whole year, but they did it!
They assisted in coaching groups of children to get their 20 hours in, it’s still early days but they are doing a fabulous job. The best part is, that they can continue to help coach groups of children who surf with Coastal Crusaders and give back to the CIC.
This year Aiden is excelling with them yet again. He has taken on the challenge of achieving his Beach Lifeguard award! Part of this training is to volunteer with the RLNI – maybe yet another world first? I’ll keep you posted on his progress.
All these achievements are absolutely awesome but there is one thing that is even more awesome that Aiden has achieved through surfing, and that is, a sense of BELONGING and feeling part of a COMMUNITY!
The surfing community do not judge his abilities or disabilities, he feels equal in the ocean. Everyone looks out for each other regardless of their ability because they know only to well the power of the ocean.
Conversation and social interaction is a challenge for Aiden but he is passionate about surfing, so he loves to chat to other surfers about the waves and because he feels good in the water, so he can, with ease.
The ocean is a place where his sensory system can relax and he can socialise without judgement, while taking part in a sport he is so passionate about!
An autistic, PDAer’s heaven!
Acceptance of authenticity is the key to success and happiness and we are truly grateful to Coastal Crusaders, The Wave Project and the whole surfing community who have given Aiden just that.
Dear Newquay Surf Community,
It would seem, pretty much everyone in Newquay knows Aiden – once met never forgotten! I’m sure you may have heard his colourful phrases, you may have had to jump ship from your board to avoid a collision or you may have had your wave high jacked by this beast, if not yet, I’m sure you will – but if you have, thank you for your kindness and inclusion. If you haven’t yet had the pleasure or you are a holiday maker surfing in Newquay – please be kind and look out for him, because beyond what you may see on the surface, is a brave young man who is truly grateful to be included.
All I ever wanted was to be a Mum and to have lots of children. So when the doctors broke the news to me that Morgan had cystic fibrosis and it was quite possible that Aiden and my unborn baby, Finley could have the same genetic disease I felt numb inside.
That wasn’t part of the life I had planned, nor was it the childhood I had planned for my children!
It instantly felt like a dark shadow was cast over our family. But somehow I had to find the strength to carry on, which of course I did.
But that when the what ifs… hit me, and just when I thought I was getting my head around it, they would bombard me, over and over again.
What if there are germs on that toy, What if someone passes on their cold to them, What if they get really sick, What if they never reach their next birthday, what if they die? Day in, day out, trying to rationalise things or get a balance between normal and neurotic became mentally draining and began to wear me down.
Spending time in and out of hospital, much time alone with only my thoughts, along with the reality of how my whole could change in a flash, makes you reevaluate your outlook on life.
So very quickly I knew I had to find a way to get a handle on my thinking.
I realised I had two choices.
I could live in fear of what might happen or I could enjoy the time I had with my babies, doing what I had always dreamed of, which was, to be a mum.
For me, It was a no brainer! Morgan was laying in a tiny cot with an oxygen tent over his head and I vowed, from that day, I would do the latter. The boys would live the most normal, full and fun life possible in whatever time they had.
When you live like there is no tomorrow the world is a care free place! You are grateful for everything, you prioritise everything, and you enjoy everything.
The Starlight Children’s Charity has an instrumental part to play in creating magical experiences for children who’s tomorrow isn’t promised.
We were so grateful to Starlight, who granted Aiden’s wish to watch the 2010 World Cup in South Africa.
The memories we made there will last forever. Aiden still talks about our trip now, some 11 years later. The sound of the vuvuzelas , the street dancers and the ridiculously cold swimming pool at the hotel are all up there as fabulous memories, along with the buffalo that charged at the truck while on a safari, the rhino that followed us and the elephants that had no tusks. Plus so much more.
Aiden is now 21 and Morgan is 18. They reached every single childhood milestone birthday. And they continue to live their best lives.
If I could take away their Cystic Fibrosis of course I would, but I am truly grateful for the Mum it made me, because without CF I wouldn’t be who I am today and my kids wouldn’t have have the childhood they had.
I am taking part in the 100 Skip’s a day challenge in August, to raise money for other families out there that are giving their kids their best, fun, full and most normal lives possible in whatever time they have.
Please sponsor me if you can. I know it’s not pretty watching me jump up and down with every part wobbling around, but it wouldn’t be a challenge if I was super slim and fit now would it!
Life is what you make it! You have a choice – choose your best life!
For those who don’t know two of my boys, Aiden and Morgan have Cystic Fibrosis (CF). CF is the most common inherited genetic disease which affects mainly the lungs but also all other organs in the body.
There is currently no cure, but really recently new drugs have been unveiled and are working miracles on 1000’s of people with the condition.
Today of all days, ‘CF Awareness Day’, Morgan, became one of the lucky ones to be given this new drug!
Kaftrio was initially rolled out to those with the most common variant of CF, but has since been approved for those with one common and one rare gene – which Morgan has.
It’s not all straight forward due to other complications in Morgan’s CF profile, which will have an impact on the dosage and combination of drugs that can be prescribed, but none the less, this is such an exciting day and one which we have waited, quite literally, a lifetime for.
It’s such a significant breakthrough which fills us with joy and hope for the future, not just for Morgan but for all those living with this condition.
Aiden has yet to be offered it, but hopefully his time will come soon.
We had always lived in hope that this day would come. We were always told – work as hard as you can to keep the boy’s lungs in the best possible condition so that they will be in the best shape if a treatment becomes available. 18 years later – here we are!
On such an exciting day, with the England football team striving to do their country proud, Morgan is continuing to work on achieving his goal! To be the first person with CF to become a professional goalkeeper. You never know one day he could be striving to do his country proud!
Today he signed for a newly formed team with Truro City, training with the 1st team and having the opportunity to play pre season games with them, where he will to do his absolute best to learn, develop and prove his worth for the future.
Just as all those involved in creating this new drug did for the Cf community, Morgan understands the importance of never giving up. His determination to reach for the top drives him forward everyday.
Morgan, we are so proud of you! Your determination to stay fit, exercise intensely and follow your dream has got you to where you are now. Keep going and never give up.
When you get together with your forever love, you discuss getting married, you discuss life plans you might even discuss what it would be like to have a baby or multiple babies! But you never discuss what it would be like to have a teenager! Let alone a house full of teenagers! And weirdly, no one else ever tells you what it’s like to have teenagers either!
Babies are hard work, they are completely dependent on you for everything and they can’t tell you what’s wrong. Toddlers are even harder, because they learn their own mind but have limited language to express themselves and become quickly frustrated when they don’t get there own way, but as they turn into little people, you begin to feel proud of your child’s ability to think of others and show their kindness. You relish in the glory that as parents you did ok.
Then, the teenager years strike!
Your kind children turn into full grown adults but somehow they revert back to that toddler mentality!
They become self righteous, putting themselves before anyone else and they slip back into that “mine” stage of possessiveness.
The world must revolve around them or you instantly become the worst parent in the world!
Now that is a tricky situation for anyone and made even more challenging, if like me, you have 4 teens in the house! (I really didn’t think that through when they were cute little babies; who stayed where I left them and didn’t answer back!)
And now I realise why no one tells you about those teenage years – if they did, the world would never reproduce!
So, none of my teens can yet drive, but they all have commitments like, sports fixtures, jobs, and lives that involve girlfriends, friends and hobbies, that for them are the most important thing in the world.
We teach our kids independence, we teach them to get out and be involved, we teach them to earn a living, all of which is awesome but Just when you think they don’t need you as much, they actually need you more that ever.
I literally spend my days loitering in random locations! I’m surprised I haven’t been accused of stalking or acting suspiciously! (Especially at the moment, with Covid restrictions, when you’re not even allowed to watch at sports clubs etc…
Here’s an example of my day – bank holiday weekend – I drove one to football, 1 hour journey, 1 hour playing time, 1 hour drive home. I then drove another to meet his girlfriend 40min journey, 2hours which changed to 3hrs there, 40min drive home. Then drove one to do a garden job, which involved transportation of a lawnmower and then drove home. Then drove another to swim club, 30 min drive, an hour and half swim and then drove home.
Of course I am more than happy to support them and drive them around, knowing that I can help them to achieve their goals, otherwise I wouldn’t be doing it.
But I think we should make it clear to all those young couples out there that are thinking of starting a family, that they should be discussing their views on teenagers.
Do they have the same views on discipline?
Are they willing to continue drive around the country even when your kids are independent and young adults themselves?
Do they have the same views on Staying out late?
On social media?
So many parents split up because the dynamics of a household changes as kids become teens. If they were more prepared this could be prevented.
My kids are always grateful (not that they always show it) But I do wonder if it ever crosses their mind that I might not want to spend the day hanging out on my own in the car!
I believe parents of teenagers are the forgotten heroes!
Today is Autism Awareness Day. Being Autistic is not something to fear, feel ashamed of, or be devastated by! Being Autistic is simply another way of being!
Being Autistic is awesome but we need to share this knowledge the world. Society must stop seeing Autism as a deficit model but instead a different model – we are all human and everybody deserves to be respected for who they are.
There is so much false information around Autism and this leads to generalised judgements being made.
Here’s just a few –
If you are autistic you can’t give eye contact – watch Aiden in this video, he absolutely can!
If you are autistic you don’t understand humour – watch Aiden in this video, he is more that able to laugh at himself and the situation with others.
If you are autistic you can’t work within a team – watch Aiden in this video, he works brilliantly as a team player.
If you are autistic you can’t have friends – watch the video…
If you are autistic you can’t interact with others – yeah yeah you get – watch the video!!!
So where has it all got confused?
It’s not that autistic people can’t do these things, it’s that quite often, the environment they are in stops them from doing these things.
Our society is geared up for one way of being – the neurotypical way!
But as you can see, when you give an autistic person the right environment , their own neurotype to work with, a non-judgmental team who respect, trust and allow him autonomy, Aiden is able to interact, engage, build relationships, have fun, complete a tricky task through problem solving, work as part of a team and so much more.
So let’s share this knowledge and show the world that being autistic is not a deficit model of being human it’s simply a different model and one that need acceptance.
Let’s support those who diverge from the majority and provide them with an environment they can thrive in.
I had a wonderful day. However, sometimes the pressure we put on ourselves to simply enjoy the day can be exhausting!
A day of appreciation for us Mum’s can sometimes and often unintentionally cause more stress than any other day.
We see all the other social media posts about how perfect their day is and we can sometimes feel envious of what others have.
However, perfect is merely a perspective.
I received a beautiful and thoughtful handmade card from my fabulous children, all organised by my kind and compassionate daughter, Jasmine. A beautiful soul inside and out. She, as was I, super proud that Aiden had willingly participated in the creation. A fine victory!
I received flowers from Morgan for the first time.
I was able to meet up with my amazing mum (and dad) and enjoy a cream tea at the beach, watch my children surf, walk the dogs, spend time with my husband and have a delicious roast dinner cooked for me.
All of which sounds perfect, and all of which was perfect, it was “my perfect”, but that doesn’t mean my day was flawless. I could have chosen to describe my day in another way.
My morning started with us running late. I arranged a time to meet my mum, which then changed 4 times because getting 7 people organised clearly takes longer than anticipated! Especially when you forget to wake one of them up!
“Where’s Jazz?” I say, as I head out to the car, only to realise she’s still fast asleep in bed!
Nip to the shop to buy the “homemade” scones for the cream tea – (homemade scones!!! Who does that???) Well, that didn’t work because they had sold out, so Eccles cakes were the make do substitute.
Aiden was unable to even acknowledge the fact that it was Mother’s day, and couldn’t bring himself to come to the beach.
When we returned the kids squabbled over the shower. Tears and tantrums erupted, just like a normal day – because it is a just normal day.
Timings didn’t quite work for the roast. Dinner was ready the kids weren’t! We came back from the beach later than planned, so we ended up eating at the table in shifts; between the boys physio and workouts, the continued hot water shower battle and Aiden completely overwhelmed simply because it’s Mother’s Day! (A day geared up to be a special and he can’t cope with the expectation.)
It was still my kinda perfect! Finding the perfect in my day meant I had a wonderful day. Picking out all the things that I didn’t have or that didn’t go to plan or that didn’t live up to the idealistic Mother’s Day expectations would have meant I’d had a terrible day.
You choose your day!
My day has been wonderful and equally exhausting.
I’ve now clawed some energy back by having a long bath, burning some candles while listening to my audio book – and I finished off by telling myself that I am bloody marvellous!
Letting go of the expectation can be hard but finding gratitude for what I have changes my perspective and allows me to see the perfection in my day.
Happy Mother’s Day to you all – I hope you can see the perfect in your day.
Here’s a little update of what our wonderful Aiden has been up to during this last lockdown.
Special interests are a fundamental element to the happiness of an autistic person. Some interests come and some go, other interests stay for the duration. Amazingly, even someone who may lack focus on day to day tasks can have an immense ability to hyper focus on their special interests.
When Aiden is discussing his, he is confident, engaging and super knowledgeable. He is able to show true authenticity, he can be his true self and feel comfortable and safe.
Aidens specialisms have changed over the years but two have always been there – football and junk food, more importantly, sweets!
Special interests are not something that should be used as a reward to make someone conform. It is simply their right to be who they are. But they can be used in genuine ways.
Inventors are never told to stop learning, stop researching, stop being creative within their subject! They become inventors because of their ability to hyper focus, to be curious and to never give up. And this is to be celebrated.
So don’t stop your child’s passion, embrace them, learn from them, understand and accept their love, and when they are older they can live every day doing a job within their field that they absolutely love!
Now who doesn’t want a career that fulfills all their dreams!
Don’t use special interests as a throw away reward! Reward your child with the time, patience and respect that their knowledge and passion deserves.
Aiden would love to to like his new Facebook & Instagram page and share his story, and if you love sweets as much as he does maybe you could even try some out.
Aiden loves Christmas, but his love comes at a high price, both literally for us and generally speaking for our whole family, including him.
Over the years we have learned how to keep Aiden’s anxiety low, mostly by having routines and keeping life predictable. But for the rest of the family that is often at their expense. Let me give you an example. Putting up the tree – what a lovely, magical and Christmasy family event, well that’s how I remember it from my childhood. It was so exciting, Christmas music on, all the family together, munching our way through the Quality Street tin (which was much bigger then!) I remember taking it in turns with my sister each year to being lifted up, by my dad, to put the fairy on the top of the tree.
Yeah, that’s not what what my children will remember. Aiden’s love for Christmas causes him so much anxiety that he he has to plan it to the enth degree.
His control led the rest of the kids to just back off and leave him to it. Aiden needs everything to look the same each year, so the tree goes in the same place with the same decorations and is put up on the same day. The same with his light display and with every decoration in the house. The joy and Christmas cheer is somewhat transformed into a militant mission with strict procedures.
Now the others are older, they now fully understand and accept that Aidens control is a need as opposed to a want but that doesn’t stop me from feeling like they didn’t have the same magical experience that I did. So this year, we came up with a plan.
As it turns out, the boys, being boys or being teenagers, I’m not sure which, are not bothered about putting up a tree or feeling Christmasy. But, I knew Jazz still wanted to be a part of it. So this year, we bought Jasmine a new little tree to go in her bedroom, some lights to decorate her room. We put the Christmas music on, ate the chocolates, from the now tiny tin, and danced around the tree like no-one was watching.
We will always celebrate the fact that Aiden loves Christmas, especially after so many years of us getting it so wrong for him. Back then, it was hard for us to take a step back and understand that we were the ones that caused the meltdowns by trying to bring surprises and make things magical. But we got there in the end. It’s amazing that he still loves it.
However, as much as he loves it, Christmas still causes him anxiety. He still needs to know what presents he will get and we still have to give them to him in the same way every year. He still has to take control over anything Christmas, and he still has no concept of money. But he now finds pleasure in giving presents to others, and we take that as a massive win.
To the majority of us, the life we are facing right now is pretty weird. We are missing our friends, and are bored with the same mundane, Groundhog Day feeling that each day brings. There’s no excitement, no spontaneity, no bumping into old pals at the shops or stopping in at the local after a leisurely walk and for those now furloughed, there’s not even any adrenaline fuelled deadlines, that we used to think we hated but now weirdly miss.
Although it has to be said, there are some parts of lockdown I’m actually quite enjoying.
The biggest part being that Aiden is absolutely loving life. We have had no big meltdowns for 10 weeks! Which means he’s enjoying it even more!
So what’s different? Well, the biggest factor is that he doesn’t have to socialise.
Now don’t get this confused because Aiden is actually a sociable guy, which may seem odd for someone with autism. That myth that all people with autism are loners, isn’t actually true but it’s not as clear cut as it may seem.
Socialising, involves so many different aspects and skills – knowing when to talk, pretending to be interested in what someone else is saying, dealing with new people, changing plans to please others, going to new places – the list goes on and on, yet to the neurotypical, the majority of those skills just come naturally – we don’t even know they exist. But to those with autism, it’s the lack of these social and communication skills is what makes everyday so hard. So, it’s not that Aiden doesn’t like people or that he doesn’t want friends, he does, he loves being with familiar people but the whole experience is so unpredictable that it causes immense anxiety. To live with that fear day in day out is absolutely exhausting.
Right now all that has gone, and Aiden is absolutely living his best life! Spending all his time in the comfort of his own home, in his safe environment, doing what makes him happy, is a really good place to be. Nothing unexpected can happen, no one is going to suddenly drop by and all conversation is easy, it’s on his terms and he has no social expectations to meet.
Demands being placed upon him are significantly reduced (pj’s are no longer just for nighttime!) and he gets to spend everyday doing his favourite thing – chilling out in his room, binge watching every single episode of his favourite trashy shows over and over again! He is living the dream!
It took a few weeks for him to desensitise and relax into his new routine but we can now see a genuinely happy smile shine through.
I know it’s going to be hard venturing back out into the real world again when all this is over.
But, if I can take one positive from this difficult time it has to be this.
It’s been such a valuable time for Aiden to reset and relax, and has given him a break from a life filled with constant anxiety that would otherwise never have been possible.
I’m sure for some it has been a very different story, but in all this uncertainty and sadness I’m super a proud Mummy.