Hello! It’s been a while but I’m back to blogging!

Life has been ticking along with a now 17 and 14 year old! Scary how quick time is going for both the boys but especially with Ryan. Now’s the time we seriously need to start thinking and planning for Ryan’s future, but the big question is Where do you start?

Ryan’s going to be 18 in 9 months and everything as we know it is going to change, going from childhood to adulthood is daunting and sometimes it feels like there is a massive mountain in front of us, an obstacle that has to be overcome to get where we need to be for Ryan. There are so many things that are going to change, the security of having school is going to disappear, his respite as we know it will be different and how is Ryan going to fill in his days? As well as health needs changing into adult services these are some of the things Kristian and I need to start thinking about for Ryan’s future. The decisions we make for Ryan are going to shape his future and the responsibility and weight that carries is huge. All you want is the best for your children and with Noah we can advise him but ultimately how his life maps out is up to him.

I wish I had a crystal ball to see how the next 10 years or so will plan out, will we make the right decisions for him, will he be happy? The only thing I know for certain is how much we love the boys and how we will do everything in our power to ensure they are both happy. Who said parenting was easy!

Well I’m going to go and have a squishy cuddle with Ryan now, one of our favourite things to do 💙

Superhero parents

I’m currently writing this sitting in front of a log burner fire in a beautiful house, set in Wasdale in The Lake District. The house is right on the lake surrounded by hills, the setting could not be anymore relaxing and calming.

I’m on a retreat, escaping reality for a weekend, taking some time out for me. The retreat is run by Kate Chartres from katechartres.com, who has been guiding us through breathwork, EFT (emotional freedom technique), reiki drumming, hypnosis and guided meditation. Kate has a wide range of expertise and knowledge, she puts you at ease and gives you the necessary tools to use when life gets a bit overwhelming. Holly from Balance and Breath Yoga, Holly is a fabulous yoga teacher, very calm and positive, we had lovely relaxing yoga sessions on a night and more energetic awakening sessions in the morning, everything was done at your own pace with no expectations. We also had Becky from Bamboo Retreat18 and during the weekend we are all having a treatment, I indulged in the back, neck and shoulder message and it was amazing, I came out feeling like I was floating on air! I can highly recommend these retreats and the women that run them, with their combined skills and a magical setting it truly is a weekend to leave your troubles behind and switch off.

Have you ever thought I’d love to go to that yoga session, a lovely relaxing massage, but can’t fit it into your busy life. Or maybe you would like to learn some skills to help you manage the stressful situations we find ourselves in all too often.

Everyone needs a break sometimes but for parents navigating life with special needs children, it’s important to find time to look after ourselves, the constant worry, stresses, struggles with day to day life, heavy lifting with our children definitely take a toll physically on our bodies but just as importantly it takes it a toll on our mental health. Do you ever just feel exhausted day after day, so tired by the time you go to bed but dreading getting up in the morning and doing it all over again.

For me I find when I’m home I struggle to look after myself properly, I’m fixated on looking after everyone else. When I think about what we do at home on a daily basis it’s exhausting, getting the boys up, breakfast for Ryan (Noah is getting better at doing his own breakfast!), washing up, getting Ryan ready, changing him, helping him get dressed, putting his shoes on, coat on, getting in the car, going out with him, pushing him in his wheelchair, lunch/tea, changing him, constant cleaning/tidying up, getting him showered, ready for bed, taking him to bed, our little routine/game every night we do when he goes to bed (otherwise he would have a meltdown if we didn’t follow his routine), the constant getting up and down when Ryan shouts for us (definitely the boss in our house!), along with all the normal household chores we do. It’s monotonous day after day. Is it any wonder sometimes your body just gives up and thinks no more I need some rest and time for myself.

I enjoy these weekends because it forces you (in a good way!) to focus on you and you alone. When was the last time you just got up in the morning and only had yourself to sort out? I’ve been reading my book, a complete novelty! snoozing, going for a walk, having some lovely food, spending some quality time with my fab friends and just sitting doing nothing in between our different sessions, and you can never get tired of looking at the amazing view.

Check out Kate’s website for the retreats she runs (there is another one in the Lake District in November) and check out her blogs for some helpful tips.

I’ve got to say I do enjoy the time to myself but I look forward to going home refreshed and recharged and to the hugs and kisses from my boys and ready again to tackle whatever life may throw at us 💙

Although we are now back into the school routine, Ryan is really struggling with his transitions. He really loves school & gets so excited talking about, but when he gets there he is very reluctant to go in and drops to the floor. It’s as if there is an invisible block stopping him from going in. We are trying everything we can think of, along with school, to help Ryan get passed this. At the minute he will only go in the temporary classroom they used for a short time at the end of last year. It’s the last classroom he had, a familiar place for him, and this we find with Ryan makes a massive difference. If something is new it’s really difficult for him to settle and trust in his surroundings. His way of communicating he is unhappy is by dropping to the floor, refusing to move and heightened anxiety. He’s done so well with his confidence and anxiety the past couple of years we don’t want this to push him back.

Transitions seem like they are going to be a trigger for Ryan in life. We know he doesn’t like change, loves structure and routine (like a lot of us do). It makes me wonder as he gets older and experiences different parts of life, is he always going to struggle with transitions? Moving into sixth form, potentially having a little job and the biggest one living as independently as possible. Hopefully as he grows up  and gains more confidence things will change, along with time, patience and unlimited support from us.

Noah has settled into school ok, he’s looking forward to visiting the high schools this week before we apply for them 😱 I can’t believe my baby, my little curly haired boy is getting ready for high school! I’m so proud of him and how he adapts to different situations and I’m sure he will thrive in high school. He has such a positive impact on Ryan’s life, as Ryan has on his, a special bond between them that will last forever 💙💙

Between the two of them they definitely keep me on my toes!

Recently I’ve accomplished something I’ve been wanting to do in a long time, finished writing my book and self published it so it’s out there for all to see!

It’s taken a few years to get to this point and a lot of hard work but I’m so pleased that I’ve done it.

‘A Different Path’ is a fictional book based on our experiences with Ryan and family life with a bit of extra drama thrown in!

I love writing and find it very therapeutic, you can get lost in a different world, let your imagination run wild and free, although this book did come with a few tears along the way going over memories. It also made me look at what the future might hold for Ryan and us.

I really wanted to write a book based on our lives not only for my own benefit but to hopefully help others. If one person reads it, can relate to it and knows they are not alone then I’ve made a difference.

If anyone fancies reading it I hope it makes you smile, laugh and cry, as I did when I wrote it.

This is for all my boys, without whom there wouldn’t be a book, thanks for making me who I am today ❤️❤️

https://www.lulu.com/shop/claire-wathen/a-different-path/paperback/product-47zpwy.html

We have recently been away over the bank holiday coronation weekend, to this gorgeous house, called Schoolhouse Fenwick in a small village called Fenwick in Northumberland.
The four of us went with my friend Madeline, one of the most amazing and strong women I know along with her 2 kids, Kian 16 and Evie 11.

Kian is an amazing young man who has Wolf-Hirschhorn syndrome, if you haven’t heard of it the disorder can affect several parts of the body with delayed growth and development, learning disabilities, low muscle tone and seizures. So this weekend was a little break for us all.

The house is specifically adapted for people with disabilities with a wet room and accessible bedroom on the ground floor and a beautiful garden, perfect for all of us.

Noah & Evie had a great time playing in the garden and the house and they were barely on their phones at all! (A real novelty). They get on really well and understand what it’s like having a sibling with special needs.

When we got there Ryan found his spot for the weekend on the sofa where he could see us in the kitchen and hear us. When we were in the house this is where Ryan sat, his safe space that he had picked and felt comfortable in. He spent a little bit of time in the garden in the sunshine on the Saturday afternoon and on the last morning he ventured into the kitchen for breakfast, but apart from that he was in the same spot, which was absolutely fine because he was happy and comfortable there, shouting when he wanted anything!

Kian is a wanderer and likes to be into everything, which is really difficult when you are away from home. He wanted to be into everything and explore, which is a natural thing for a child to do, but he can’t be left alone to do so with so many things to get in to, but he doesn’t understand that, which results in meltdowns and him struggling to regulate himself. By Saturday night he was so overtired and over stimulated he didn’t know where to put himself & Madeline was in the firing line all the time trying to calm him down, she came home covered in bruises, which is not unusual. Kian is also a very loving lad, he loves to snuggle and stroke your face and laugh at you when you do something funny!

On the Sunday we wandered around Seahouses, Kristian took Noah and Evie in the amusements and Madeline and I pushed the boys in their wheelchairs along the harbour, getting back up from the harbour was a struggle! We passed a tattoo shop and Madeline asked me what tattoo I would get that represents us, my answer was something that represents being strong, because that is what we are strong women, who have a very strong bond and friendship. If it wasn’t for Ryan and Kian we would never have met & I’m so grateful we did.

We had a really lovely weekend but it does make you realise that although you can escape from home you can’t escape from the disabilities, wherever we go the behaviours, struggles and normal day to day tasks we have to do with our boys follow. However we can’t wait till the next time we go!! 💙💙

Ryan’s gone off for his monthly stay at respite, or as he calls it his holiday! Not only is this a break for us and Noah, it’s a great break for Ryan, increasing his independence and spending time with other people who aren’t family.

We recently had a visit from a transition enablement worker, basically someone who helps with the transition from child services to adult services, it seems crazy that at nearly 15 we start this process, but it is meant to help the process be a lot smoother. When we were going through the transition pack she mentioned have you thought about Ryan living as independent as possible with carers. Apparently when he turns 18 we can put him on a list to be matched with other people with similar interests and needs, and they are placed together in a suitable house with carers. It’s a very slow progress for this to happen but it really got me thinking about his future and independence.

With Noah I know that when he turns 18 he may want to go to university and move away from home, or get a job and move out on his own at some point, which would be hard but he has to make his own decisions about what he wants to do with his life and we have to support him.

With Ryan it’s so different. We will have to make these decisions for him as best we can but at 18/19 I wouldn’t be ready for him to leave us. That may sound selfish to some people, but apart from 3 nights at respite a month Ryan is with us the rest of the time. Letting someone else take responsibility for all aspects of his needs absolutely terrifies me, how do you trust someone else to look after him properly, would Ryan feel comfortable living away from us?

I know this is the next natural step when you have children, they grow up and go off to life there life, I will worry about Noah going off and doing his own thing but it’s a different kind of worry.

How do you know when is the right time to let go? How do you know you are doing the right thing? What age is the most appropriate time for Ryan to leave home? I want Ryan to have an independent life but at the same time I want to keep him with us, where I know he is happy and safe. I know though this isn’t fair on him and he deserves to have opportunities in life just like Noah. I guess in the next few years Kristian and I have a lot to think about and decisions to make and I can only hope we make the right ones.

Mostly what I want in life for my boys is for them to be happy, healthy and loved and I will do anything to make sure they are 💙💙

Once again the school holidays are looming upon us. A time I well and truly dread. Not because I don’t want to spend time with my boys, but because the lack of routine we have without the school day makes life with Ryan that little bit harder. He is so routine orientated and I have realised over the past few weeks we are probably the same, none of us really likes a lot of change.

Everything seems to go out the window in the holidays, bed times are different, morning times are and there is none of this just nipping out to shops etc when the boys are home, getting out the house with Ryan is a mission! We have to plan our days around what we can manage with Ryan and what Ryan can manage as well as thinking about Noah and what he would like to do. Noah is older now and wanting a bit more freedom and independence, which is a scary thought, at 11 years old how much freedom do you give them, this is all new to us never having gone through this with Ryan.

Last summer holidays were a real struggle as we had no playscheme for Ryan and trying to fill the days in and keep him occupied was hard. One of the times I ventured out with him and took him on the metro train, one of his absolute favourite things to do, it turned into a total disaster with Ryan refusing to get off the metro and having to ask a stranger to help me lift him off, he also refused to leave the metro station, dropping to the ground (one of his tactics he uses when he doesn’t want to do something!), which also resulted in hubby having to leave work and come and get us, the whole experience left me feeling upset, angry, stressed and failing in my ability to take my son out.

While it’s much easier to stay in the house, in Ryan’s comfort zone, I go stir crazy sitting at home all day, even if we get out for an hour it’s better than nothing. If we don’t go out and do something than Ryan isn’t using any energy up and this usually results in his sleep pattern being distributed, many a nights in the holidays we have pulled all nighters with him as he just wouldn’t sleep, not a great way to live! Some days though I just haven’t got the energy to do much, let alone go somewhere and have to push Ryan in his wheelchair. We are hoping by the time the long summer holidays come we will have outreached sorted out for Ryan so he is able to go out with carers and do the things he enjoys.

I don’t know what the Easter holidays has in store for us but one thing I know for sure, we will not be going on the metro!

Being a parent can be exhausting and hard work at times for anyone, being thrown into the world of special needs on top of that can at times be suffocating.

As parents we put the needs and happiness of our children first and as a mum to a son with special needs and a ‘normal’ (I detest that word!) son I have found over the years that I forget about me, I forget about looking after myself, taking time out for myself and taking the time to just breath.

Recently I have taken a whole weekend to myself and attended a health and wellbeing retreat in the Lake District, a weekend of putting me first, looking after me and recharging my emotional and mental wellbeing.

The retreat was held in the beautiful setting of Wasdale Hall on Wastwater Lake. The youth hostel was fabulous, surrounded by snow topped hills, it couldn’t have been a more stunning place. The retreat was run by Kate Chartres from Kate Chartres Therapy, www.katechartres.com
Kate is a skilled therapist and has over 20 years of experience in the mental health field, and Holly Jay from Balance and Breath yoga.

Upon arriving I didn’t know quite what to expect, I had never stayed in a youth hostel before and was a bit apprehensive about the room sharing but it was great, our room was essentially just somewhere to store our belongings and fall into bed on a night time, along with the late night chats and laughs we had!

During the days we had morning yoga (great start to the day) and evening yoga (so relaxing in the evening), lake dipping (I did this one morning and yes it was absolutely freezing but amazing!). We did breathwork sessions – to help reduce stress and improve relaxation rapidly, reiki drumming and hypnosis – involving focussed attention, this practice allows modification of behaviour to create lasting improvements, learned about EFT (Emotional Freedom Technique) – tapping on meridian points in the body to reduce distress/ pain rapidly whilst using cognitive statements. The combination of all these sessions gave me the opportunity to learn more about taking care of myself and be able to learn techniques to use in everyday life, especially on one of those days where you just feel like giving up!

And of course in between there was plenty of opportunity for free time to relax, read, take a walk, enjoy the scenery or go to the local cafe/pub for some lovely food 🤩

I know to some talking about our emotions and mental wellbeing it’s scary, embarrassing and as a mum I sometimes feel like you are expected to just get on with things, after all it was my decision to have children, but it wasn’t my decision to have a child with special needs and the lifetime of uncertainty it brings, I love my boys with all my heart but when I had my eldest son and we found out at birth he had down syndrome a little bit of me died in that moment along with the life I had dreamt about for him and us. In one moment our whole world changed, we had to alter our world to give our son the best life we could and part of that is making sure we are the best version of ourselves and looking after ourselves.

I have got better over the years at trying to look after myself but it is definitely a work in progress!

If any of my beautiful friends and special needs mums or dads fancies the chance to escape reality for a few days and join me on one of the retreats I can guarantee you will come away feeling rejuvenated and energised and you will definitely get the chance to just breath…..

I wanted to focus on how tough life has been for Ryan and us as a family over these past couple of months. His anxiety has heightened to the point where he is desperately trying to shrink his world into such a small box where he feels safe and comfortable but unfortunately life doesn’t work like that. Myself, Kristian and Noah are Ryan’s security blanket in life and we, along with grandparents, are the people that he feels safest with.

We try and do our best to give Ryan all the opportunties he deserves in life and set him up to be as independent as possible so he can have a life away from us that is his own just like everyone else does. At the moment this is really difficult as he struggles to go out and be around other people. He has been struggling in every aspect of life, school, home, in the community. Sometimes I think it is easy for people to forget that just because Ryan has a learning disability and special needs he still experiences emotions like the rest of us do. He gets happy and excited about certain things and he gets upset, frustrated and angry like we all do at times but he finds it difficult to express his emotions and I wonder whether he understands his emotions and what they mean? He has been more expressive of his emotions over these last couple of months. As a baby Ryan rarely cried, it’s heartbreaking now to see him get upset to the point where he is distressed and crying, something we aren’t used to but it is the way he is able to express himself at the minute. I can’t imagine how hard it must be to not be able to express how you are feeling to other people, we end up second guessing how he is feeling sometimes and that is really difficult because as parents you want to do everything you can to protect your children and make sure they are happy, healthy and safe.

The majority of our time over these past few months have been focused on Ryan and the issues we are trying to overcome but this has definitely taking a toll on us as a family. It sometimes feels like our whole world is centred around the problems we have faced with Ryan and the fights we have had to endure to get what he deserves. We spend all our time thinking and talking about it and we forget what else our life is about. Noah has definitely felt the impact of this more recently, he is more aware of what is going on but struggles to understand what it all means. Through no-ones fault he has been put second a lot of the time and as a mum it breaks my heart to know I haven’t given him enough attention, I don’t want him growing up thinking Ryan comes first when they are both equally as important to us and the one thing I dread the most is Noah thinking as he grows up he hasn’t had the same love and attention as Ryan and I don’t want him to think he is going to have to be responsible for Ryan in the future.

I try and protect Ryan and Noah as much as I can from seeing me emotional and upset on those really tough days but sometimes it is difficult to hide. I am meant to be the one comforting them, making sure they are ok not the other way round. It’s hard to keep it all in when the frustration gets too much and you need to vent, Kristian and I are lucky that we have each other but these past few months have even tested our relationship at times. We are very lucky that we have supportive families and I’m extremely grateful to have some amazing friends in my life who will sit and listen to me, give me a hug and provide the cocktails when needed! If these past few months have taught us anything it’s how important it is to look after ourselves as well as our boys. The boys will always be my main priority but I have come to realise how necessary a bit of me time is to recharge my batteries ready for the next battle.

I do believe that everything happens for a reason and on those extremely tough days when you just want to run away I now stop and think we can do this. Ryan came into our life for a reason & Noah did, all it takes is a hug from Ryan, a I love you mum text from Noah and I think this is exactly where I’m meant to be and do you know what we are going to be ok……

Having a child with a disability has definitely given me a different perspective on life. Before having Ryan I didn’t really appreciate where this would take me. I never really thought about people with learning difficulties and disabilities and then all of a sudden that is all I could think about and it felt like it took over my whole life. Having a child who was different to what people perceive as ‘normal’ made us realise what our priorities in life would be and appreciate our loving and supportive family and friends more. We definitely encountered a few people who we considered as friends reacting negatively to Ryan and ourselves. For some people it seemed like we didn’t fit in with their life anymore, we weren’t the normal new parents showing off their new baby. We were the parents showing off our beautiful baby boy with a very big difference and we were starting a different journey to our friends.

In the first few weeks of having Ryan it wasn’t so obvious that he was different, when we went out he slept in his pram like every other new born, it was only as the months progressed it became more obvious that his development was delayed. That is probably when people started noticing more that Ryan was different. At baby groups he wasn’t sitting up like the other babies and playing with toys like they were, at times it felt like you had to explain to people who didn’t know us why Ryan was different, it felt as if we had to justify why he was the way he was. The same goes for strangers that you would pass in the streets, I am sure everyone is the same when you pass babies or young children in the street the natural instinct is to smile at them, people would smile at Ryan but then it is like they clocked he was different and you get the pity look and the constant stares.

As Ryan got older and his behaviours and challenges changed the more people would stare at him and the more it felt like people were judging us. Many a times Ryan has sat on the floor when we have been out, whether it is in a supermarket, a shopping centre or a restaurant, and refuse to get up. When he is like that there is no easy way to get him up and quite often we have to just wait it out. The disapproving looks you get from people when he displays this kind of behaviour is hard, it is like you are being judged on how bad a mother you are as you can’t control your child. Why do people, strangers, feel like they have the right to judge you, pity you in the few minutes they see you trying to do your best. They don’t understand Ryan and they don’t know anything about our life but yet strangers feel they have the right to make you feel so inadequate. They don’t realise how much you already judge yourself and constantly wonder if you are doing the right thing, the best you can.

Society as a whole still seems to have very negative views of people with disabilities and people who don’t fit into a ‘normal’ category just because they look different, sound different and act differently and I don’t want my boys growing up worrying about fitting in, everybody is unique in their own way and we shouldn’t be made to feel any less adequate than others.

A lot of the time I feel like you have to explain to people how Ryan is before any of his behaviours are seen. It is as if we have to pre-empt what will happen, we went to Florida last year and before we flew I was nervous that other passengers on our flight would say something about Ryan. Over the past few years he has rocked more and more (definitely a sensory soothing behaviour for him) and I was so worried he would sit in his seat and start rocking a lot and this would annoy the people behind us. As soon as we got on the plane we mentioned this to the stewardess so she was aware and luckily no-one was bothered by Ryan. When we are out in public and Ryan starts rocking I try and get him to stop as it does create a lot of attention and looks from people but this is one of the ways Ryan uses to make himself feel safe and calm and why shouldn’t he be allowed to express himself freely. You do worry about the way Ryan is going to behave in public and a lot of the time we tend to go to places where we know Ryan feels comfortable and safe and accepted.

People can see Ryan has down syndrome but they can’t see he has autism and anxiety and I think that is where some of the problems lie when disabilities are not always something you can see. I don’t think society will ever truly change the way it sees people with disabilities and accept them for who they are. All we can do is make sure those we love and care about feel safe and secure and happy in themselves. Society may not always be accepting of Ryan and his particular ways but I challenge anyone to spend even an hour with Ryan and I promise you, you will fall in love with him for who he is and not just see a disability. After all he is the best medicine, his smile and hugs alone speak a thousand words……………