Category: Parenting

When You Teach Your Child A New Swear Word!

By mid week of half term this week, I was totally and utterly mentally exhausted and had massive auditory overload. I think my name had already been said/whined about 6k times. None of them listen to anything I say. By the 8th time of “Please sit down and eat your tea” or “Please take your shoes off” or “Please get out of the bath” or “Get off your sister” or “Give it back to your brother” (you get the picture) I was pretty much loosing it.

To top it off, I’ve managed to ‘teach’ Bella to say bloody. In context. 😬 The words uttered were “Argh, this bloody Lego.”  as a half built something went crashing across the floor. Parenting WIN. Yay, go me. Oh dear! Hangs head in shame.

I wish I was one of those Earth mothers who got the whole week right, beautiful activities suitable for each child and nothing but fun and laughter. The kind who takes photos of their food maybe, for Facebook, or who always signs off with #soblessed. Come on! This is the real world. This is my real world of three children, one with special needs. Laughing, fighting, whining (A LOT), cuddles, tears (occasionally mine) and fun.

There are some fantastic, funny and lovely times but honestly, some moments are just soooooo hard. So hard in fact I decided to read a book I’ve had on my shelf for a little while The Yes Brain Child by Dr Daniel J. Siegel and Dr Tina Payne Bryson. I realised, as I was going through the book, that some of the techniques discussed are tactics I use mostly with Bella and actually for myself in prep for stressful situations, often pretty successfully. However, by Wednesday, I wasn’t in the right positive/resourceful state to access that knowledge in the moment so I had a total parenting fail. The whole day at every turn.
After Wednesday’s diabolical morning, I decided to get straight and start again. I tried the Yes Brain technique with Jago and bingo. It worked. I doubt it will work every time but by the end of this week I am feeling far more in control of myself and able to parent better. Sometimes life just gets a bit overwhelming there for a moment doesn’t it?

The great bits of this week. Bella learning to ride her bike and Freddie being able to participate in this regular family activity. Going to the theatre with friends to see The Ginger Bread Man and the smiles on the children’s faces. A very lovely friend taking time to check in with me, recognising  I was overloaded.
Seeing how pleased my grandparents were to spend a little time with the children. Taking Freddie to a friends party and seeing how much he truly enjoyed himself and how pleased his friends were to see him. It really made my heart swell. He cracked me up at the end. No inhibitions about asking if there was a party bag. Little monkey. I had a really great time with him.  Plus, Jago has taken to calling me ‘Queen Mummy’, got to love a Mummy’s boy. Big bonus at the end of the week, Ollie and I get to have Friday night curry and wine with good friends and the children on a sleepover at Gogoos to give us a nights respite.

Don’t you just love it when you take about ten photos and still can’t get all three to look at the camera and smile. 

Phew. A nice dog walk in between helps to clear the mind. Five minutes meditation in the shower with the door locked each morning and Prosecco. These things all help.

I love my spirited and challenging children. Must try harder to be calmer though. Lack of sleep doesn’t help. Think I might go to one of those strange gyms each week in the run up to the summer holidays where you can just sleep for an hour to prep myself.

Just having written down the good things that have happened this week has made it feel a lot better. If you are having a tough day, write down the good things that have happened and those things you are grateful for. It gives me great clarity.

I hope everyone has got through their half term in one piece. xx



If you purchase anything via the links with Amazon in my blog posts, I receive a small commission at NO added cost to you. This just helps me a little to maintain the website and continue to provide useful and empowering resources for parents and carers of children with special needs and disabilities. Thank you. x

The Day We Received Freddie’s Rare Genetic Diagnosis

You know that moment when you receive a call from your child’s professional and life is at a momentary stand still? I know you know it. The slight panic, the billions of story lines running at high-speed through your head about why they would be calling you. The fuzzy feeling, slightly sick and hopeful all at the same time feeling. Those are the feelings I had when we went to our first Genetics consultation, when we received a diagnosis and when I got a call from the Genetics team yesterday. Totally out of the blue. Totally caught off guard.

Looking back, when we had Freddie, we were so naive about his disability. Even though we were told at my 20 week scan that our baby’s brain wasn’t developing correctly and we had asked tons of questions and freaked ourselves out by Googling all possibilities, it never ever occurred to us it could be something genetic.

I’m fairly sure no-one had ever suggested genetics, especially because all the tests and scans were coming back negative. That term just wasn’t a part of my vocabulary.

At our first Genetics counselling session, our second child Bella was still a tiny baby. We were asked if we thought she had any differences or difficulties? Was she developing as expected? I can still feel the cold sweat shock as I let those questions sink in. Could it be hereditary? Could we have unwittingly charged ahead with a second child without all the information to tell us if she would also have special needs? From that point on, every milestone she approached was met with caution and relief in equal measure. She was so speedy to walk and talk. She was and still is super independent.

Our two biggest concerns from that meeting were, would Freddie’s condition be life limiting for him and could Bella be a carrier? We would need to know this to give her all the information she needs as an adult to make decisions about having a family of her own.

Our biggest fear is, will a diagnosis come with a life limiting label? I just can’t bare to go there in my head but I am a pragmatic person and I crave knowledge so I need to know. I just don’t want to know.

We had been on the DDD study for a couple of years. To be honest, I never thought we would receive a diagnosis because every other test had come up negative.

The day we received the call from our Geneticist to invite us in to discuss their findings was a shock. I had been in regular contact with them, asking for any result updates. Not because it would change very much for Freddie in the present but because we wanted to try for a third child. This time we wanted to do it with a full bank of knowledge. There were no answers and we were getting further away from the time we would like to try. We took a leap of faith and went ahead. By the time that call came through, Jago was almost 12 months old.

That sick, swishy feeling came over me again. They had a diagnosis.

We then had to wait about three weeks to meet with the Doctor in person at the hospital. I tried so hard not to think about it. I couldn’t change the outcome or our choices so I thought, it is what it is and we will deal with it.

Our Geneticist was fantastic. She was calm and clear and gave us as much information as she could. We had quite a lot of questions but had we had more time, we would have asked more. It was exhausting.

Freddie is Rare.

Freddie has been diagnosed with a rare genetic condition. TUBA 1A. At the time of receiving the diagnosis, there were only a handful of other children known to have TUBA 1A in the UK. A Rare Disease is defined by the European Union as one that affects less than 5 in 10,000.

One of those children was deceased.

I don’t know if that child had other medical issues or not. I don’t know the reason for death. I just know, I now have to try to keep my head when this knowledge creeps back into my conscious mind. Practically talking, Freddie is medically healthy and although there are issues, they don’t have any life threatening concerns right now. That is how I want it to stay.

It is always a good idea to have two of you attend the results meeting. Often what your hear is a version of what was actually said. Thankfully we were given some paperwork and a letter confirming the outline of the conversation. It turns out that Ollie heard something slightly different to me. We were told it was genetic. We were told they had looked at mine and Ollie’s genes too. There were no correlations with me. There were some gene changes in Ollie that Freddie shares BUT they are NOT anything to do with his diagnosis. Ollie just heard the first bit. For around two months he never said a word to me. He spent that time thinking it was because of him. It was only when we read the diagnosis paper together that he realised it was a De Novo change. Occurring in Freddie for the first time. He carried that stress and sadness unnecessarily.

Yesterday, caught totally off guard whilst chatting to a friend, the phone went. It was our geneticist. The slight panic, the billions of story lines running at high-speed through my head about why she would be calling me. The fuzzy feeling, slightly sick and hopeful all at the same time feeling. Those are the feelings I had again. Was she going to say they had found a connection to his diagnosis being life limiting?

Thankfully, the call was to say there have been some more children diagnosed and the DDD Study want to write a paper in conjunction with the various Geneticists around the country. There is so little known and so little literature about TUBA 1A that this would be the first real collection of data and information to help future families. Would we be interested and happy to have Freddie included in the paper? Yes. A thousand times yes.

If this knowledge had been available when I was pregnant with Freddie or when we had him it could have provided so many unanswered questions. If we can help another family in the future not to feel as alone and isolated as we did, it will be worth it.

I still don’t have any answers about Freddie’s prognosis as he marches ever closer to his teenage years and adult hood. I have to just keep everything crossed that as more knowledge is formed, nothing presents itself with a life limiting label.

Freddie Is Rocking The Human Connection

A few days ago, I posted a video on my Facebook page from Special Books By Special Kids. What they talked about immediately hit me. It was about how everyone, no matter if they are neuro-diverse  or otherwise have a desire for connection and community. I shared it because he is a fantastic example of a fantastic human being. He is patient, kind and open.

It really wasn’t until a couple of days later that I was thinking about what his friend/student was doing. He talked about how he was asking questions to which he already knew the answer. Why was he doing this? Chris talked about realising he was doing it to feel a connection. It was perhaps difficult for him ask questions and start a conversation about something in Chris’ world but he knew he could start a conversation with something he know about.

Mum. Mum. Mum. Mum. Mum.

It made me think a little more about Freddie. Anyone one who has ever spent any time with Freddie will know that he likes to talk. They will also know he likes to say their name A LOT. Once he has learnt it, thats it. I often find myself explaining, even when people have known him some time, that he loves to talk but he doesn’t have a lot of language. So, in order to communicate, he uses what he knows, over and over. It’s also how I explain it to myself when he has asked me for the 30th time that day “Where Daddy gone?” when he knows he is at work. The other one is in the car, asking me every time we change direction, “why go this way?” Argh – because its how we get to Grandmas/the pool/a friends house/the supermarket etc. The latest one is shouting at the top of his voice, “Hello Mummy, Hello Daddy, Hello Bella, Hello Jago” all at once even if we are not all with him. My boy has literally no volume control. Ha Ha.

Patience In Bundles

I have had to learn patience in bundles. Imagine being asked the same handful of questions over and over and over again, all day long. It is really hard work and a little bit like torture but I try to smile and answer him each time as if he hasn’t just asked me. I want to encourage him to use his language and increase it, which he is doing slowly but surely. Often though, when he asks “where Daddy gone?” I ask if he knows and he pretty much always does. Then we can start to elaborate on what he knows. I’ll ask him, who does he work with or has he gone in his car or in someone else’s? What colour is the car? etc. Then we can communicate on a deeper level.

Although I know all of this about Freddie and I encourage him to talk, I had never really thought about it being for connection. True connection and what that means to us as humans. I look at how our dog communicates with us with no human language and all the ways we know what he wants or needs. It’s a basic human desire to be connected. I can see that Freddie’s desire for connection and community is huge.

Funny how sometimes you see something but don’t truly see it at first. Freddie is rocking the human connection.

Why We Went On To Have Two More Children After Having A Child With Special Needs

A friend asked me this weekend why we decided to have three children? There was no sarcasm or malice in the question. Just simply wondering and genuinely interested. He knows that Freddie has Additional Needs and wondered how we cope?

Sometimes ignorance is bliss.

When we found out at my 20 week scan that Freddie’s brain wasn’t developing correctly and after all the scans and tests that followed until his pre-term birth, our focus was just getting him here safely. We had no diagnosis, didn’t have a clue what the future would hold and had never really thought about anything genetic. However, we had always wanted two children and I think that because we could ‘hide’ Freddie’s needs when he was a baby and pretend to ourselves that he was going to be ok, we decided to go for it pretty quickly. Living in denial was probably quite blissful at the time. I became pregnant with Bella when he was only nine months old. Perhaps if we had left it longer, we might have made different decisions? I don’t know. It was around this time that the hundreds of appointments and therapy sessions really kicked in. I was one exhausted pregnant lady. We got through it though and were so excited to have our beautiful little girl.

When Bella was around three months old, we were invited to attend genetics counselling. When I look back, we were so naive and innocent and actually right in the centre of total chaos. The Dr asked how our new baby was, did we think she was developing typically and did she have any dysmorphic features? Time just stood still. I can recall every prickle of fear as if I were in the room now. We honestly never considered for a moment that Freddie’s needs could be hereditary and we also didn’t know there was such as thing as De Novo Genetic changes that occur. No-one had ever spoken of this other than the more well known syndromes they tested for regularly. What a shock that was.

We went onto the DDD study and waited.

During this time, I never threw away any of their baby things. Hoarded everything. We were only having two so what was I thinking? I called the geneticist a number of times hoping the results would be round the corner. Nothing. Our main concern was finding an answer to enable us to give Bella all the information she would need for when her time comes to be a mum. If that is the path she chooses. We also wanted (and didn’t want) to know if Freddie’s condition was life limiting.

As Bella was approaching 18 moths, I realised she needed back up. I don’t have any brothers or sisters and as I’ve experienced more of life’s riches and heartbreaks, it would have been good to have that back up. So grateful I have Ollie.

We needed safety in numbers.

I didn’t  want Bella to feel pressure when she is older, perhaps when Ollie and I are no longer here. It’s tough managing these challenges alone.  Although risky, without a diagnosis, we weighed up all the options and all the solutions open to us. After a lot of discussion, we decided to go ahead and try for a third baby. Freddie’s rare diagnosis of TUBA 1A came after Jago was born.

I’m not really sure how Jago will take it if he realises he was back up? I’m hoping he will know he was born from a deep place of love for our whole family unit. He has made us complete and we adore every inch of him as we do Bella and Freddie. We are extremely lucky to have three children. I hope they remain close as they grow, lean into each other and realise they now have safety in numbers.

Enough Already.

Firstly. I totally love a good firework show but enough already. Teddington has been literally panting in my face for 3 hours now and tripping me up at every given opportunity.
Secondly. I’m absolutely sure the children all save up the hysteria when they know I’m flying solo at bed time.
I have been dealing with a panting dog, a cling on Jago, an extremely excited Bella having opened some fabulous gifts this weekend from her early birthday party and a Freddie. Freddie fell awkwardly whilst we were at My mum-in-laws and spent quite a while screaming. Very loudly. He was so shaken and couldn’t bare weight properly. Typical when I’ve got to get all three home in the dark. We made it home but Fred still couldn’t walk alone and was still screaming. Any neighbours that could hear us arriving home, that’s what was going on.
Anyway, eventually got them all into bed in one piece. Full check over of Freddie, no protruding bones, no bruising and no hot or red areas. Hopefully just muscular. It’s so so difficult when he can’t articulate well enough with enough language to really tell me what and how he is feeling. 🙁 Don’t fancy a trip to a&e. Argh. Plus, he has had one wobbly tooth for two weeks. I’ve been watching it all day, I take my eye off him for five minutes to be with Bella, check him and it’s come out. Nowhere to be found. He told me he swallowed it! Typical. I think it’s going to be my bed time shortly.
Fingers crossed my boy is ok and can walk properly in the morning. Oh little Freddie. X


Violent & Challenging Behaviour

Yvonne Newbold is an absolute inspiration and a true champion for disabled children and their families. She is the Author of The SPECIAL PARENTS Handbook and a parent of three children all with Special Needs. She shares her highs, lows and techniques in this book. 
Violent and Challenging Behaviour
A rarely discussed topic is that of children and young adults who have challenging and violent behaviour. Most often towards their mother and/or other care givers. It has been a bit of a taboo subject until recently. Parents feel shame that their child beats them or destroys their home. It isn’t because their children are ‘bad’ or their parenting is poor. It is often because they find it so difficult to express themselves for a magnitude of reasons and it is most common in children with learning difficulties.
Yvonne appeared on the Victoria Derbyshire show on the BBC this week along with some fellow parents who’s children have Violent & Challenging Behaviour VCB. She is working tirelessly to break the silence of this heartbreaking situation for so many families. Yvonne has set up a private Facebook support group and she is running a series of workshops on this topic.
Autism & Learning Disability Behaviour Help
Two Realistic and Down-to-Earth Sessions in One Event for Parents, Carers & those who work with Children, Young Adults & Families
How to Reduce Violent & Challenging Behaviour
Puberty & Sexuality, & its impact on Autism & Learning Disabilities
If this is something that challenges you at home then please do take a look at the events. Here is a link to Eventbrite for the 25th November 2017 and 6th January 2018
What a fantastic lady.

It’s Almost Impossible To Escape

October is a really shitty month for me. A difficult, sad and stressful month. The 23rd October brings around again the anniversary of my Dad dying, followed by his birthday on the 24th. A double whammy.

When I’m talking about Emotional Resilience, on here, Facebook or at my workshops, I am usually referencing it with regard to having a child with Special Needs. However, something I share is that it is also something I have been practicing in other areas of my life. Often that resilience is needed to cope with the big life events like watching your father die and at other times it’s dealing with smaller situations or perhaps how you allow others to make you feel.

Nine years on and in many ways, it doesn’t feel any easier. I’m not sure it ever will. However, I know the signs better now and have strategies to see me through. I arrived home from school drop off and walking the dog on wednesday morning. Ollie just knew, straight away, that I was crumbling. I hadn’t really been thinking about Dad or feeling sad but suddenly the swirl of emotion started to bubble up from deep inside. I totally believe having a god cry is essential. Let it all out and start again. Although, I hate crying because honestly, I don’t look or feel good for it. I’m one of those red, blotchy, puffy frog eye types of criers. Not attractive and requires multiple re-applications of make-up to look reasonable.


Can’t resist a cheesy 1980’s moustache & psychedelic shorts photo. Me and my Dad at the Duxford Air Show.

Within the Getting Your Voice Heard Workshops, I talk about getting into the right state to cope with upcoming events/meetings etc. Within that practice is understanding that we experience life with all of our senses – taste, sight, touch, smell and sound. This is also how we remember our experiences. That’s often why you will smell a fragrance and be reminded of a loved one or perhaps, like me, the smell of Skips reminds you of the time you ate too many as a child and vomited. Never ate them again I can assure you.

This is what was happening to me. Unfortunately my senses weren’t allowing me to get into a positive state this time. The whole month of October was spent going to and from the hospice on a daily basis. Everything about the month of October reminds me and takes me back to that point. Walking the dog, how the air smells, the mostly sunny days, dew on the grass, cool in the evening, conkers on the floor and the light of the day, the rapidly approaching decay of life and of season into Winter. It’s almost impossible to escape it.

So, although I am often taken by surprise, I am more aware and prepared for it. I advance book to see my Osteo, one of the only ways I can release the tension build up. I spend time with Ollie and the children because apart from the fact that I love them, it’s almost impossible to have two minutes to myself to get caught up in how I’m feeling. I have failed slightly this week but I’m conscious of getting an early night. Everything is so much harder to cope with when sleep deprived. I take big doses of vitamins,  try to eat well (on top of the chocolate for comfort) and drink more water. Seeing friends for Prosecco also seems to help. Who knew? Getting the balance of distraction and rest is key for me.

This is how I cope when I’m dealing with more stressful times with Freddie too, which is why we talk about all of these things to understand what emotional resilience is and why we need it.

The past few weeks have also required me to try to impart some of this to my four year old, Bella, as she started school this September. New environment, new friendship circles, new rules – new everything. It’s mostly extremely positive and exciting so far but unfortunately, there has been an older child who has been ‘picking on’ Bella and her classmates. Nothing particularly serious but a little daunting non the less when you are only four years old. We have talked about how she can handle it and what course of action to take. I too have, of course, raised it with her teacher. I hope I’m giving her the right tools to deal with it, especially if at any point it becomes more serious. Something I am incredibly mindful of though is that children and adults for that matter, rarely act out unless they are struggling. Perhaps the child is unhappy, worried or fearful about something and feels more in control when behaving in this way? Who knows? What I do know is that the child needs compassion and support. The earlier it is spotted and worked through, the better for everyone. I also know how I would feel if it was my child behaving in this way. I would be gutted. It’s possible for any child to start acting out for a whole variety of reasons. I’m conscious that being the sibling of a child with special needs brings with it many emotions and challenges. I can only do my best to give her the resilience tools she needs and hope for the best. If she was ‘picking on’ others I would hope for compassion towards her and to me as her mum until it could be resolved.

Emotional resilience is always a good thing to practice. We are human and humans suffer at times. We need compassion and ways to cope so that we can enjoy life during the fantastic times.

Keep an eye out for the next set of dates in November for both Getting Your Voice Heard – How to be a Velvet Bulldozer and Emotional Resilience – The Ebb & Flow of a Special Needs Parent, in conjunction with Entrust Care Partnership.







A Breakthrough for Freddie

I feel like I’m living two parallel lives at the moment with Freddie and Bella. Bella just started reception and is flying. she loves all the new things she is learning and is chat chat chat about it all. I’ve even had to go to school for a lesson in Phonics and I am regularly told by Bella that I have got it wrong. “No no no. It’s not D for Daddy, it’s D for Dinosaur.” Whereas Freddie, mostly tells us about the fun things like playing bat and ball and swimming. He is learning academically at his own pace with his own targets.

I’m honestly slightly (extremely) nervous about how, as they all progress their school careers, I am going to fit in helping Freddie with his essential daily Speech Therapy, Bella with a plethora of mainstream homework (most of which I anticipate having to Google first) and get them all fed and into bed each night before they meltdown with exhaustion. Never mind how it will work when Jago gets to school! Eek.

We don’t talk a lot about academic results with Freddie, more focus on personal care and independence skills at the moment but I know School are working hard behind the scenes. Then, yesterday a lovely news piece came home in his book bag. He has been able to write an F for quite some time, he recognises his own name and he has letter recognition for all in the alphabet but that’s roughly where we plateau. Then we see he is working on the other letters in his name too. Trying so hard and doing so well. It’s just a bit of a proud moment for us really and I wanted to share his breakthrough. x

A Siblings Struggles

Sometimes siblings find home life a bit of challenge living with Special Needs. Bella certainly struggles at times and doesn’t always seem to know her role within the family. Freddie is older and yet ability wise he is so much younger so it can be confusing for her with a younger brother as well. She does act out at times at home (you can usually find me pulling my hair out drinking gin) and needs more mummy/daddy time but she is a brilliant, smart, funny and a loving daughter and sister. We had her report today from Pre-School and we were blown away. She has made so many friends, grown in confidence and ability and she is caring and fun. Reading all these wonderful things gives us some confidence that even though it can be tough at times for her, she is going to be ok and thrive. A true Wonder Woman. So proud of my beautiful Bella Boo. X

I am Bill Murray!

I admit it. I mostly hate bedtime. Not mine, I love my bedtime. Some days I just really hate the children’s bedtime. It truly is like doing an aerobic workout. It’s exhausting.

It’s not awful every night but tonight it was pretty bad. I know Freddie is really tired having started back at school but his behaviour as soon as it comes to getting upstairs is terrible. Flying solo makes it tougher.

I think his sensory processing is all out of kilter at the moment. I’m sure it’s worse when he is tired. He chose the shower this evening but started freaking out the minute the water was running. He started shouting and screaming as soon as he was under the shower head. To anyone walking by, it would have sounded like I was beating him. I wasn’t.

Getting him dressed, drying his hair, giving him his meds etc all sounded like a torture session.

The whole act of getting a quick shower, popping on PJ’s and cleaning teeth should have taken what, about 10 minutes, maybe fifteen? Forty minutes later, I’ve managed to get him in to bed. This is my equivalent of training for a marathon.


Thank goodness for Bella. She was a total star. She read to Jago and brushed her own hair and teeth whilst she waited for me. She can be a handful and strong willed at times Which will be a positive attribute in coming years) but tonight she really pulled out all the stops. I realised how grown up she is for a four year old. She got in the shower, requested Jago get in too, washed herself and her own hair and helped him too. What an amazing little person. Sometimes siblings have to grow up so much more quickly out of necessity. My little girl is becoming so independent in so many ways.

Although this time of night is often a time I dread, especially if I am without Ollie, the end result is always one of calm and love. Honestly, it takes forever to get all three of them down. Part of the reason though, is that on top of all of the above plus reading books, Ollie and I both lay on each of their beds individually for a cuddle. It is a few minutes to tell each one of them that I love them and to talk about anything special to them (positive or negative) from their day. We talk about how they are feeling, who they played with and what was the best bit of their day.


By this time, Freddie is usually calm and back to his happy, chilled, kind and loving self. I lay by his side and cuddle him. He tells me for the umpteenth time, who they picked up on the bus on the way to school, about the big blue car and having dinner in the dinner hall. We have a lot of repetition in our conversations. Sometimes it can feel like Groundhog Day but what I remind myself, is that Freddie wants to communicate verbally so much so we encourage it and try to expand upon it. Once upon a time, we didn’t know if he would ever have spoken language. Taking that little extra time with each of my children has really helped bond us together in what is a very chaotic household.

Calm is resumed. I can leave their room knowing that no matter what, they know I love them.

Phew, where is the Gin?