Along side Archie’s many other challenges, he was diagnosed with motor tics last year.

In years gone by, we had put his repetitive movements down to “stimming” (a self-stimulatory behaviour that is marked by a repetitive action or movement of the body such as repeatedly tapping on objects or the ears, snapping the fingers, blinking the eyes, rocking from side to side, or grunting. This is typically associated with certain conditions such as autism spectrum disorder), yet, this was not the case.

Archie still stims (his favourite being able to lay flat on the floor and repeatedly watch the wheels of a toy car move back and forth, or our fishy bubble tube) but his tics have become far more aggressive and regular.

With this in mind we thought we’d share some of the finer details of the signs, symptoms and how we can support people living with tics… no matter the cause 😊

Thanks to the Royal Children’s hospital Melbourne for this brilliant explanation!

 

Signs and symptoms of Motor tics

Motor tics are movements that can affect any part of the body, but particularly the face, eyes, head and shoulders. Any movement can be a tic and the movement is made without a clear reason or purpose.

Phonic tics, which make a sound, can include anything from throat clearing, sniffing, squeaking to words or even phrases. They can sound exaggerated and out of context.

Tics will come and go and can change over time and one tic can stop as another starts. Tics tend to increase during strong feelings, like stress, nervousness, excitement, or tiredness. They are ‘suggestible’, which means that talking about tics and drawing attention to them will increase their occurrence. This can increase stress and frequency of tics for the young person. Some people can suppress their tics for short periods even though they are involuntary. This can be hard to do for a long time and more tics may appear afterwards. In general, tics are reduced at times of active and focused concentration.

What causes tics?

We do not fully understand the underlying cause of tics.  There are complex genetic and neurobiological factors, and it is more common if another family member also has tics. It is important to remember tics are not harmful.

How are tics diagnosed?

Tics are diagnosed by a paediatrician or neurologist. No tests are required to diagnose tics. Your paediatrician or neurologist may ask you to describe or imitate the movements that your child makes. They will ask your child about their experience of the tics. Home videos can also be helpful for diagnosis. Some children with tics experience extra problems like difficulty concentrating, fidgeting, impulsivity, and anxiety. Your paediatrician or neurologist will also ask about your child’s development, learning and focus.

Management for tics

One of the challenges with having tics is the response from family, friends or other people around your child. It is a good idea for these individuals to not make a fuss about tics when they notice them (active ignoring). Asking the young person to stop the behaviour, or punishing them for the tics can make tics worse as the young person is not intentionally doing them. It can be helpful to discuss this with school teachers privately, so everyone at home and at school responds to the tics in the same way.

Some helpful general measures include:

Most people with tics do not require any specific treatment. This is particularly the case when tics are not interfering with the young person’s daily life. Where tics are disruptive, psychological treatments and medicines can be considered.

Psychological treatments can be helpful in some well-motivated young persons, even though tics are not behavioural or voluntary. A psychologist can guide the young person to delay or change the tics if the young person can learn to recognise the urge leading to a tic. Effective treatments include habit reversal and comprehensive behavioural therapy for tics (CBIT). Relaxation training can also be helpful. These treatments require motivation and practice and can take some time, which is why they may not be suitable for all young people. Your child’s treating team will discuss if they believe this treatment will be suitable for your child.

Medications can reduce severity and frequency of tics but cannot stop or cure the tics. They are not effective for everyone and there can be side effects.

If your child has problems with difficulty concentrating, fidgeting, impulsivity or anxiety, discuss this with your paediatrician. These behaviours should be assessed and treated.  This is an important aspect in managing your child’s overall health and well-being and can be helpful in reducing tics.

When to see a doctor

You should visit your GP or paediatrican if you are worried about your child’s movements or their learning, concentration or development. Your child’s doctor can evaluate your child and provide helpful resources, provide further advice for managing tics, or refer your child to a specialist if required.

Key points to remember

You may have noticed that I have been a little quieter online this week. This is because both Archie and I have been tussling with some of the challenges that come with our own neurological differences . For me, my ADHD has caused me to be hugely restless for a little while now ( possibly as I approach Mothers day, having lost Mum not so long ago) and my life long need for excitement. Some call this “dopermining!”

For me , this presents in the need for over eating, frantic home reorganisation or total exhaustion.

Medical research shows that heavier people ( like me) are five to ten times more likely to have attention deficit hyperactivity disorder (ADHD) than members of the general population. The link between ADHD and obesity is very real — though not yet fully understood. Certainly impulsivity, poor planning, and high-intensity emotions don’t help in the fight to lose weight, as I know from experience! Since starting my weigh loss journey I have had to find healthier ways to fulfil my ADHD cravings. Usually my work hits the spot however, I have found myself in a slump and decided to try and get myself out of it!

With the help of my oldest Son, I went and had my Septum pierced.💪 Yes, I realise that for some this sounds like a hellish idea but for me, the nerves, the excitement and thrill of a new hole in my face hits that dopamine spot 🤣

I’m sharing this because I think that its important to recognise that we are all different and need cope with things in the only way WE know how. Some people procrastinate during overwhelm, some spend, some eat, some pierce….none of which requires judgement.

For me, living with ADHD is about taking things one day at a time and excepting that I cant rest/ recoup in the same way as a neurotypical person can and that’s OK!

ASD overwhelm

Archie has had a bit of time of it too! Sadly, this week he had to come home from school after just 2 hours as he was just so overwhelmed and upset. There were no issues at school, no drama, no illness just complete, debilitating overwhelm. I also must stress that the team at his specialist school are INCREDIBLE and we are so thankful for their support!

His overwhelm, known as Autistic burnout’ is the intense physical, mental or emotional exhaustion, often accompanied by a loss of skills, that many people with autism experience. Archie is usually great at communicating but in these moments he is often very withdrawn and non- verbal. Its seems clear to me that this results mainly from the cumulative effect of having to navigate a world that is designed for neurotypical people. THIS IS SO TOUGH!
Like many aspects of autism, burnout varies from person to person. Some people experience it as an overwhelming sense of exhaustion. They may have more difficulty managing their emotions than usual and be prone to outbursts of sadness or anger. Burnout may manifest as intense anxiety or contribute to depression or worryingly, suicidal thoughts. It may involve an increase in stimming, increased sensitivity to sensory input or difficulty with change.

So we hope that by sharing the information in this post we will encourage you to recognise the REAL seriousness and impact of overwhelm from both the ADHD and ASD perspective. If a day off is needed then THATS OK!!! Do whatever you need to do for yourself as a parent / carer or your loved ones!

As Temple Grandin often says, ” we are different, not less!”

One of the most common characteristics of children with Autism is a real difficulty with socialising and forming meaningful connections with other people, as a result, so many children with ASD, like our Awesome Archie, often face social isolation and occasional loneliness. Research suggests that a connection with a companion animal can both reduce loneliness and provide needed companionship in children like him. It also suggests that lots of neurodivergent kids have strong human-animal bonds due to the fundamentally non-judgmental nature of animals / pets and their unconditional love 🙂

Its surely no surprise then that Archie is of course a lover of ALL animals, his first love being Mickey , The Fedora wearing superpuss of course! This love has prompted us to explore family days out with animal’s at the core and today it was the turn of Monkey World in Dorset.

What a truly amazing place to visit, particularly if you are a neurodivergent family. Firstly the price. We managed to get a family ticket ( 2 adults and 2 kids) plus Archie who was permitted to bring me for FREE as his carer! This is such a brilliant idea and a really impressive and inclusive gesture. We are so impressed.

Not only that , the toilets were all clean, the shop was not over priced and the coffee was fantastic! Furthermore, their were ample picnic tables dotted around and there was no question AT ALL of the permission to bring your own packed lunches, which for us with all of our brood is a must. Check out some of our Monkey world highlights below and know that we highly recommend this as a great and inclusive day out for all the family!

Click here for reel 🙂 https://www.instagram.com/p/C3apF7iIuSI/

A well earned rest!

This half term holidays has been a beautiful one for us. Aside from our monkey adventure, we have done NOTHING! We as a family have spent almost all week watching Marvel movies, playing games (some board, some computer) and eating well. It has been a time to reflect, recalibrate and reconnect.

Rest is a VITAL part of protecting our mental health and what we all NEED to feel our best. While doing my research for this post I discovered that there are 7 types of rest…who knew?!

Paying attention to rest deficits is a critical part of our mental stability , If you’re exhausted, you can’t do your best —and if you’re not getting the right type of rest, you’re not going to be able to get past that seemingly endless exhaustion.

Something that sadly I have learned the hard way!

So we at Awesome Archie encourage you to rest, find peace in a movie or book and don’t be afraid to say no to that café invite. Your REST IS VITAL!

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Wowsers, what a busy week.

As we have done in previous years, Archie and I have been proudly supporting Place2Be this children’s mental health week. The theme this year is ” express yourself”. Archie expressed his loves and all the things that help his mental health by dressing me in those things!

Place2Be do so much for kids who need support and we are so proud to shout about them! I’ve grabbed this from there website…

Every day, children and young people across the UK struggle with their mental health.

We are committed to helping children and young people with their mental health, and the need for our services grows daily. 1 in 5 children and young people experience mental health difficulties. Half of all mental health problems are established by age 14.

Our approach to children’s and young people’s mental health is to intervene early to prevent life-long mental health issues. We do this by:providing support early, spotting mental health problems before they develop and helping children and young people cope with challenges throughout their lives

using an effective therapeutic approach backed by research that combines several ways of working

offering a range of mental health support services, including advice and support for families and school staff, to build resilience and raise awareness of mental health across the whole school community.

You can see why we are keen to help in any way we can!

So, to support their amazing work this week I have been… Pikachu ( Pokémon) , A Lego man, an XBOX controller ( that was awkward!) and Marshmallow ( Fortnite character) . As promised, I wore these things to my everyday appointments Even supporting in school ( thanks team WG!) , weigh day at slimming club and a lunch date with the hubby at a Garden centre 🤣

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I agreed to do this because it makes me understand a little of what Archie feels like on a day to day basis. Arch, like lots of children with Autism, often feels self conscious, embarrassed, like everyone’s looking etc. It also meant we were encouraged to speak to lots of people about the importance of caring for yours and your children’s mental health!

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I don’t mind admitting that it has been a really fun but tiring week (trying to stay up beat, trying to look like I wasn’t embarrassed etc) but I only have to do this for 1 week of the year. Our Awesome Archie does this EVERY DAY!!! What a brave and awesome kid he is 🙂

Please take a look at the Place2Be website for all your children’s mental health support and donate by scanning this link if you can 🙏

And finally THANKYOU to the team at BBC Radio Solent for having us on again. It was a total pleasure to chat on two different regions about the incredible ” make a Difference” awards that Archie and I were were honoured to be finalists last year.

.We also spoke a little about why we do what we do and how we plan to expand moving forward. Link to the interview below 🙂

Well…..what a week it’s been here at Awesome Archie HQ!

Archie has had a tremendous week, he even experienced his first ever “interview” with the help of his support team at the Link. The purpose of this was to try and support Archie when it comes to making a decision about college and or career options. Unsurprisingly he explained that he adores animals, with a particular interest in cats and feline behaviour. The team are now looking at options to support him moving forward into adulthood. THANKYOU Link team!

Knowing this then , you may not be surprised to hear that Archie has real admiration for anyone who is knowledgeable and empathetic towards all animals. ENTER CHRIS PACKHAM!

Christopher Gary Packham CBE is an English naturalist, nature photographer, television presenter and author, best known for his television work including the  children’s nature series ” The Really Wild Show”. He has also presented the BBC nature series Springwatch, Autumnwatch and Winterwatch since 2009.

Can you imagine then our sheer JOY when we received a personalised message from the man himself?! Link here ⬇⬇⬇⬇⬇

https://youtu.be/cXT2UkQYiZo

Chris, from the bottom of our hearts… THANKYOU!!! We are humbled, proud and even more driven to continue spreading knowledge, awareness and expectance for ALL living with the challenges of Autism.

YOU HAVE MADE OUR YEAR!!!!!!!

Awesome Archie non profit has grown from strength to strength over the last four years. We are always not only grateful for the work we are able to do in supporting Mainstream schools and families, but humbled by your support! This is where we share some exciting news.

Awesome Archie has been pretty much permanently booked up ( mainstream in school support, assemblies and or leading staff training) since we launched. This is because our non profit is run by Archie and myself.

I work full time ( no wages) and the amount of help I can give children is limited because I can only be in one place at any one time.

We are aiming to change this by the end of 2024 by becoming a fully registered charity.

The benefits of gaining this status are many, including our ability reach the wider community . We would be able to apply for big money grants and even lottery funding allowing us to eventually train and employ support workers etc. We can look at getting a space for parents/ Carers to meet and effectively grow to support so many more neurodivergent families.

If you, your company, your school . your organisation or your team could help us with this we would be forever grateful.

Here is the link to our crowd funding page.⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇ To get started we need to raise a whopping £8000. This will set us up for the first year and will mean that we can purchase lots of much needed SEN equipment, provide in school training and much more.

Thanks for your AWESOME support 🙂

https://www.justgiving.com/crowdfunding/rebeccaclapcottawesomearchie

Lots to get through so lets do it 🙂

We were invited to the stunningly beautiful Bournemouth collegiate school, to not only host an Awesome Archie assembly but also to lead the staff in a ” lived experience” training session. What an AWESOME day we had!

Not only were all the children so polite and listened so intently, but the staff were really welcoming . Everyone was receptive of how ( in our own experience) SEN challenges within mainstream school can negatively impact an entire family, mental health and all round wellness.

We spent an hour discussing the challenges but also some low to no cost adaptations and in class solutions to better support pupils with SEN. We were also please donate all 4 of our books for the children to reference as and when they in the BCS school library.

We’d love to publicly thank ALL the team at BCS for this opportunity and willingness to hear from us and we look forward to working with you again in the future 🙂

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Our thanks to the Christchurch carnival 2024 organisers.

Some of you may remember that last year, Archie and I were privileged to be a float on the Christchurch Carnival parade. We felt so lucky to be able to literally shout out about Autism to what felt like the whole of Christchurch 🤣

Fast forward to this year and Awesome Archie have been asked to support them in their efforts to make this years event even more inclusive.❤💙💚💛💜🧡 I can’t give too much away at this point, but we are so happy to help. It’s amazing that the organisers are keen to ensure that ALL families can feel welcome and be a part of all the festival fun.

THANKYOU CHRISTCHURCH CARNIVAL!

And finally

Never underestimate the importance of a great 1:1.

If you look at the job description for a 1:1 TA you may see these requirements

But let me assure you that it takes a whole lot more than that. It takes real empathy, experience , compassion and a drive to support a child that can be HUGLY challenging every single day. To get the right 1:1 support is almost impossible 🙁 We however, were one of the lucky few to find our perfect TA.

Mark was Archie’s 1:1 over 6 years ago ( during mainstream) and yet he still keeps in regular contact with all of our family. He supports me as a tired mum by being a phenomenal friend and makes a brilliant partner for a much needed night out 😉

Mark, thankyou for all you do for the kids that are lucky enough to have you as their teacher, TA or role model, in whatever capacity! We love you deeply 🙂

Today my daughter was privileged to be invited to Dorset school games “Dare to Believe” event at TGS.

You may recall me telling you that, not too long ago, I had a fantastic meeting with Mr Dan Moody (strategic lead for sports and development) and Mrs Claire Tabor (children and young persons manager and school games county lead). In this meeting they explained to me all about the Dare to Believe program.

It’s a sporting event for children who find sporting events tough. It may be that they are really shy and reserved, they may struggle to make friends or maybe they find teamwork tricky. It may also be that they have a physical disability or have a neurological difference. Whatever the reason, all are welcomed and what a JOY it was.

Dan asked me to come to the event with a criticising eye. He wanted me to spot any improvements that needed to be made or what they could do better moving forward. Well, I walked around the event, speaking to teachers, TA’s, parents/carers and the kids and had nothing but positive feedback.  The Event was beautifully organised, extremely welcoming, fantastically inclusive and, for me, very moving. What choked me up the most was the Dorset leadership team trained by Mr Moody himself. The team is made up of school pupils, some as young as year 7. They not only supported the kids but created a lot of the games themselves. Just EPIC!

We at Awesome Archie would HIGHLY recommend this AWESOME event!

Thankyou Mr Moody and Mrs Tabor for your AWESOME work.

Welcome to 2024!

This means that Awesome Archie is now heading into its fourth year 🙂 THANKYOU!!!

This Christmas break, superhero sibling Daisy decided that our website needed to do something to entertain the kids. In her words ” it’s all a bit grown up and boring!” So, in her defense, she got right to it and created a simple game to brighten up the site. We are so proud of her achievement.

“Awesome Archie pop” which can be found under the games heading on this site, is a take on the well known ” whack a mole” and has a simple but fun game play. This game can also be played on the mobile phone and is FREE so enjoy 🙂 More games will be added to our site as the kids get creating!

Finding head-space as a parent carer.

Having your own space when you have a child ( or in our case children) with additional needs can feel impossibly difficult to achieve . Every person’s idea of finding head-space is different. For me, an hour painting (its usually a disaster but the process is what I need) or 20 minuets reading can sort me out! The issue I find is that that time doesn’t come often enough and I regularly get overwhelmed. For me , this quickly escalates into a feeling of failure as a Mum, wife and a real resentment for the life I live having to put others before myself… ALWAYS! It’s only now I know that these feelings are normal. Its ridiculously hard being a parent carer and so why wouldn’t I feel overwhelmed a lot?!

I would also love to normalize sharing the moments of sheer misery. I get so tired of seeing peoples social media pages full of picture perfect moments that WE ALL KNOW are just a small glimmer of what life is really like.

Of course, it’s also important to create a support system for yourself as a caregiver. If you are able to, depend on friends or family members who can be a listening ear for you. Consider joining online support groups where you can share your experiences and learn from others who understand what you’re going through. It’s ok to say no to social invites if you can’t face it! Your true friends will understand that looking after your own mental health is ESSENTIAL for you to be a good parent/carer and remember YOU ARE NOT ALONE!

You are all welcome to join our facebook support group, link here👇:)

https://www.facebook.com/groups/3650909864922453/

And finally Our Awesome Archie pledge to you for 2024

We as an organisation have changed so much over the last 4 years. We started off with 3 assembly diary dates in local schools, chatting about the books Archie and I had written to get discussions going about ASD. Fast forward to now- our academic diary for 2024 is almost FULL!

We have been recognized at the BBC Radio Solent ” make a difference awards” . We have rubbed shoulders with super kind and generous celebrities like Harry Redknapp, Fred Dineage, Alun Newman, PDAdaduk . We have our books in the local library and are still proud affiliates of the Dorset Children’s Foundation. We hosted and live streamed a carol concert for those unable to be out in the cold. We continue to work with other HUGE charities like Autism Unlimited and Place to be, whilst still volunteering in school with FREE TA 1:1 support.

WE ARE SO PROUD AND GRATEFUL!

We pledge to continue this important work throughout 2024. To keep talking about Autism, the challenges, the joys, the gifts. To keep creating HONEST and lived experience content to support those who need it. To keep supporting both schools and parents and most importantly, keep trying to make the world a better place for our neurodivergent children.

HAPPY NEW YEAR TO YOU ALL 🙂

Okay, okay, I know I said that my last post would be the final one of the year but we just couldn’t help it 🎅🤣🤣

We are so lucky to have returned from an wonderful short break at Centre Parcs Longleat. While we were there we were able to really rest, reconnect as a family and get ready for Christmas 🙂 However, Archie and I have promised to use every opportunity we can to talk about Autism and so of course we chatted to people while we were away. 🤗

We are always pleasantly surprised about the amount of people that say ” you came and spoke at my sons school” or, we “follow you on tictok!” We get to meet so many AWESOME families who, like us, are trying their best to manage the day to day and still carve out the time and energy we all lack to have FUN!

Hence this post. To all of the families that came and said HI, this is for you ❤🙏 Please know that via this site you can access all of our socials for daily updates and support.

HAPPY CHRISTMAS!!!!!

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