Category: General

When You Have To Admit You Are A Family With Special Needs.

This might seem a weird thing to say. Especially when it is clear that Freddie has Special Needs. I’ve always known this, even in the early days of denial. Of course I have. This is different though. This was the moment I realised that Ollie and I and Bella and Jago also have additional needs which require support.

Our needs are not due to a disability but they are as a result of Freddie’s.

Up until now, everything I have been working towards has been focussed on advocating for Freddie. Getting him everything he needs in order to fulfil his potential and happiness. Advocating for him is something I will always do. I have also been working  hard on  my resilience the past few years, in order to keep going and thinking about how to support Jago and Bella as they grow. That that isn’t enough anymore.

I’m not shy in asking family and trusted friends for help or a favour but this is the next level up. We have always coped well in most areas but life is changing. Things are supposed to get easier as your children grow but we are in some respects, finding the opposite. I am having to change my viewpoint on how we are coping. Physically it is getting more challenging for me and for Ollie too to some degree. Plus, I admit I get freaked out at the thought of taking all three somewhere, like the park, on my own. To the point where, I rarely do. It’s hard work with the extra support that Freddie needs. I see other Mum’s out there with their three children  and feel like a bit of a failure that I don’t do that with ease. However, the Mum’s I’m looking at, in general have three neuro-typical children in tow, so I try not to beat myself up for it.  I’m getting better at it as Bella and Jago are becoming older and more self-sufficient so that’s a positive.

We are also tied to time with Freddie’s school drop off each day. This impacts what out of school activities Bella can do and those which Jago will want to do. The Mummy guilt always steps in here. I am doing enough for each child? With thanks to a good friend, Bella gets to go to gymnastics once a week so the pressure is off for a little while. What happens as she gets older and wants to do more? Weekends are a challenge with Ollie’s work schedule and Freddie being at his most tired and challenging on a Saturday.

All these little things that seemed a normal part of family life (in my vision of what I thought it would look like) I used to take for granted. The things about raising children that never occurred to me are starting to show up.

These are just a couple of small examples of the challenges of wanting to and trying to run a typical home when the family has additional needs. They are minor when read in isolation but add those to all the challenges on a daily basis, both physically and emotionally, including all the meetings/therapy/behaviour challenges/paperwork/organising etc it all gets so overwhelming.

I have always been determined not to allow Freddie’s disability to define me or us as a family and this is a belief I still hold. What I’ve realised though, is that in order to keep to that way of living as closely as possible, we need help. We are not a typical family. Freddie needs a PA, he needs respite and we need respite. Bella and Jago need respite. We need it booked in and organised. I need more physical help when Ollie is working the incredibly busy summer season at work. I don’t do failure very well and I’ve always had the determination that I can achieve anything. These wobbly times have been rocking that belief a little. I haven’t liked it. I also don’t do being out of control very well. So, with the things I can no longer cope with, I’m taking control in another way. Admitting we need support and going and getting it before it gets too bad. It hasn’t been easy to admit I can’t cope. It’s taken being close to breaking point and ‘encouragement’ from my family and friends little by little to get sorted.

Note to self: don’t be so stubborn and take more of my own advice.

xx

 

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Taking Little Bits Of Imperfect Action.

This past week has taken a more positive path for all of us in the Mann Household. Sometimes you need to get to breaking point with overwhelm and let it all out to enable you to start again.

I have finally got myself started with running, using the trainers I bought recently. Having been hit by a car, as a pedestrian, when I was 17, I’m always really nervous of causing more injury to my already dodgy back. Hence why I’ve always rejected the idea of running.  However, with the encouragement and slight ‘peer pressure’ from friends (you know who you are), I have started slowly with a Couch to 5k. I’ve completed my second go and I’m feeling pretty good about it. My bum muscles really knew about it this week mind you. Ouch. Biggest muscle, most pain. No cardio exercise for about 15 years would explain why I was in so much pain after running for only eight minutes in total. It can only get better from here, right? Teddington couldn’t work out what I was doing? It’s like the children’s faces when I get the ironing board out. “What’s that Mummy?”

I need more energy to continue with the pressures I have and more strength to continue to physically support Freddie. Plus, I want to know I’m doing something practical to do my best to live as long as I can for Freddie and my other two. He is going to need me for a very long time.

I’ve taken action, albeit little bits of random action, to make some changes in lots of areas this week. Including getting some support for us with Freddie in managing some of his challenges. Talking it through with friends and having a couple of coaching sessions myself to work through some if the areas of overwhelm. I’ve got a better plan in place for the interim now.

Here is to getting through the next two weeks Easter Holiday unscathed.

 

 

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Being Rare Is Never Black & White

Yesterday we took a day trip to Birmingham Children’s Hospital for our first appointment in Cardiology. Freddie’s Neurologist isn’t convinced that his suspected ‘absence seizures’ are neurological. As usual, nothing is straight forward for my little man. He has never presented anything in black and white and things always seem to need lengthy investigation. Although the physical symptoms look like absence seizures, the Neurologist isn’t convinced due to the frequency not being high enough in his book. This means we are now going down the Cardiology path. We need to rule out his heart being responsible.

I’m no doctor, but my gut instinct is that is it not his heart and that it is neurological. We would rather know for sure though than make an ‘educated’ guess and be wrong. His heart is physically in good condition which is excellent as he did have a hole in the heart before he was born, so that’s a positive. He did really well with the tests considering he has a few sensory aversions. Historically, if you had shown him a plate of jelly or a ball of play dough it was game over. Crying and shaking would ensue but having worked on this over the years he is in a better place. He tolerated the stickers and wires for the resting ECG which came out fine and he did really well with the jelly on the Echocardiogram (ultrasound) test. The next step is another non-invasive test where Freddie wears an ECG arrhythmia detection device which can be discreetly used to screen for infrequent and/or asymptomatic arrhythmias including those that occur during sleep for up to 32 days. “GOOD LUCK WITH THAT” was my response. Freddie is going to be pressing the buttons night and day. We do have to try though so that we can capture what the heart is doing when he has an absence so we will give it a go. If it doesn’t work, we will go to the next level.

Freddie was very excited to see his heart on the screen and insisted on taking a photo of it.

Ollie couldn’t come yesterday due to work commitments and as I hate driving in Birmingham, my Mum came with me for support and her husband drove us in which took the pressure off a bit. The only thing to do after a visit to BCH is to get a treat from the Boston Tea Party.  We always take Freddie here if we have time. He chose a huge slab of chocolate brownie and I only managed to steal a tiny square. Made him happy though. I would like to pretend I was virtuous and just had a mineral water but it would be a lie. A huge Latte and a big piece of carrot cake went down nicely thank you very much.

This is the start of a whole new language and set of terminology that I need to learn and many more appointments to come. Will just try to ensure cake is the pay off after each visit.

 

 

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When Your 5 Year Old Child’s Teacher Tell You Off!

What a week!
I attended a group meet at Freddie’s SN school to talk about the upcoming Aimee Mann Mentoring workshops and met some fabulous parents. Bella and I got ‘told off’ by her teacher for her wearing lipstick at school. I was practically crying with laughter, made no easier by two of my friends cracking up in front of me, whilst trying to hide it. Bella is only five and already such a sassy monkey. Totally tried to defend herself and say it was lip balm 🤦🏼‍♀️. Love her. She is just a mini me. I’m fairly sure I wasn’t like that at five years old though. Parents eve for her also this week. lunch out with a friend, and a trip out with Jago and friends today. In the middle of this, it was a pretty emotional week. Majority of the time I can bounce back pretty easily through well practiced resilience techniques but this week it was just damn hard. It’s the ebb and flow. Nothing majorly new. Often when we have a big therapy session for Freddie, it’s so great to see how far he has come but it also highlights just how far we still have to go. It’s a lot for us to deal with sometimes when it brings up so many other thoughts, feelings and emotions. I’m sure so many of you can relate to this.
Anyway, to cheer myself up, I spent an hour with a friend (she has the patience of a saint) in a sport shop. Yes you read that right and I am now the, sort of proud but nervous, owner of a pair of running trainers. Literally anyone who knows me personally will be in total disbelief. I’m still to get them out of the box but intentions are good.
All the gear and no idea.

My Sons TUBA 1A Explained For Non-Scientists

Having a child with a Rare Disease can be complicated. We spent so long with Freddie being Undiagnosed, having to try to explain his special needs, I realise that having a rare diagnosis leaves us pretty much in the same place.

Wednesday 28th February is Rare Disease Day. A day when we can focus on education of rare diseases and what that means for families like mine. In this vein I’d like to share with you all what it means for Freddie.

TUBA 1A is a protein gene and in short, these tubulin genes are needed during brain development for cell division and healthy brain growth.

People found to have TUBA 1A will have vast developmental differences. Our particular Super Hero, Freddie, is affected in the following ways.

It affected his brain development, first seen at my 20 week scan. The usual walnut patterns of grooves and folds seen in a typical brain are much smoother on Freddie’s. In some cases, the brain can be almost completely smooth. This can cause a wide range of difficulties and disabilities from near normal growth and progression to being life limited. There can be difficulty swallowing, seizures, failure to thrive and unusual facial appearance or dysmorphic features. We have been told that our beautiful boy has dysmorphic features. We just think he is super handsome.

Plus, a part of the brain called the Cerebellum is small and underdeveloped in Freddie. When this part of the brain is underdeveloped it can lead to intellectual disability, delayed overall development (GDD) and movement problems. It is responsible for voluntary movements including posture, coordination, balance and speech.

There are other areas of his brain which haven’t developed properly and these differences can also be seen in others with TUBA 1A so they all contribute to his difficulties. Plus, to add to this, he also suffered a stroke before birth. We think this is the biggest contributing factor to his much weaker left side.

Freddie has a smaller than average head (Microcephaly), he is only around the 2nd centile for head circumference. He has low muscle tone, a learning disability, communication difficulties including Developmental Verbal Dyspraxia/Apraxia, plus a neurological eye sight condition, a bileteral squint and bowel issues. He also needs more time to process what he sees and hears and to act on those things. Occasionally he is ignoring me on purpose but most often he is processing what is going on around him. He has poor balance, falls and trips regularly and poor coordination in most areas. These include walking, personal care, feeding himself and eating/swallowing.

He has also, in the last 18 months, started to show signs of suspected Absence Seizures. The Neurologist isn’t totally convinced this is what is happening, although we have been told to look out for epileptic activity due to the areas of his brain that are damaged. So, whilst we wait to decide he will be tested in the cardiology department for any irregular heart function.

Freddie has had to build many many new pathways in his brain to enable him to walk, talk, hear and eat. Every single little daily task you and I might take for granted has had to be learnt and programmed through hours and hours of therapy.

We taught him everything manually, hand over body and hand over hand. Everything from sitting and learning to use his hands and arms to prop so that he didn’t just fall backwards when sitting. Rolling over, how to move his legs to force a roll. Crawling, how to move each leg individually and how to get his body to push him forward. Plus, coordinating that with alternating his arms so that he didn’t just fall on his face. It happened a lot in the beginning. Getting into a standing position from sitting on the floor. We even had to teach him, hand over hand how to clap his hands together. Then came teaching him hand over hand how to hold a spoon and how to move it towards his mouth and get it actually into his mouth.

If you imagine an adult who has suffered a stroke and how they often need to re-learn all the skills they have lost, this is what we did for Freddie. This is what he has overcome and achieved.

In the beginning, the medical teams were not overly confident he would be able to do very much at all. Ollie and I, although frightened half to death it might be the case, never took that stance. We have always believed anything is possible. Even having read all the documentation available on TUBA 1A, I don’t focus on that. Freddie is unique and will go on to achieve much more. That is how we get through the days.

Don’t let anyone put limitations on your child. Advocate for them and give them every opportunity within your power. You are your child’s expert and the biggest driving force to their individual success stories.

www.raredisease.org.uk

www.undiagnosed.org.uk

 

 

 

 

 

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

 

P.S.

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.

“When You Get In Your Head, You’re Dead.”

This week I was chatting to another SN Mum I met last year. We chatted about how we can defuse anger in ourselves and in others.

It’s so easy to listen to that internal narrative. You are angry, upset, irrational maybe and totally focussed on the thing that is causing you stress. It might be the unsuccessful meeting you attended this week, the annoying letter discharging your child from a service  which they clearly shouldn’t have been (that was me last week) or the ‘well meaning’ comment from another parent/relative. You know the kind, right?

“When you get in your head, you’re dead.” Tony Robbins

You are so focussed, going over and over the experience in your mind and not seeing a way out of it – you are in your head totally.  One of the best ways out of this is asking yourself or others open questions. No-one wants to hear ‘Don’t be silly’, ‘It’s fine’, or ‘Well, that’s not how I see it.’ None of that is helpful is it?

This constant going over and over in your head ultimately causes us suffering.

Feelings of anger, failure or rejection are totally normal. However, if you can’t ask yourself open questions to get perspective and make a plan, those feelings can lead to self-doubt, self judgement and negativity.

Changing your narrative can lead to perspective, knowledge of what is realistic and a plan for how to move the situation forward and get out of your head.

Initially, I was fuming that the hospital had sent out a standard letter discharging Freddie from Orthotics due to a ‘missed’ appointment. I had actually tried to get hold of them to explain that we couldn’t attend between Christmas and New Year but couldn’t connect with them. So, rather than getting myself into an angry state about the ridiculous waste of time and money writing to both me and my GP and then subsequent wasted time and effort it would cause to make an appointment to see the GP to get re-listed, I got asked myself a couple of questions. Can this be easily resolved? Yes. Is it a massive deal? No. Am I prepared to just get on with contacting them? Yes.

I wrote a firm but polite email explaining and suggesting the Trust look at their protocol. I received a really pleasant email within 24 hours acknowledging the situation, advising that he had been reinstated to the register and giving me a new appointment date and time. My contact also assured me she would pass on my thoughts to management. It possibly won’t make any difference but it’s always better to highlight it than not. So, yes it was irritating but i just let it go. I got out of my head. This was something quite small really but add that to the hundreds of other irritations we all have and it can all build up in a negative way.

This is a section of what I wrote:

“I have received a letter stating that my son has been discharged from Orthotics for missing one appointment, in line with Trust Policy.I did try to call a few times to inform you that we were unable to make the appointment due to two out of the five of us in our family having a bug. There was no-one available and I wasn’t able to leave a proper message.As a frequent user of the NHS for our disabled son, I fully appreciate the cost of missed appointments and the frustration it must cause when people repeatedly miss them. My apologies that on this occasion we did not attend.  However, I would suggest that perhaps rather than wasting time and paper/postage writing to me and my GP and the further time and money for us having to re-register, it would be useful to look at our record of attendance and the patients needs. One phone call would have been sufficient for finding a solution.You will notice from his records that we have not previously missed any appointments. You will also clearly see that my son is disabled with a life long condition and will therefore most likely need these services for life.I would like you to reinstate Freddie to the surgical appliances register and I would be grateful for you to re-issue another appointment.I look forward to hearing from you with confirmation that the discharge has been lifted.”

 

Two of my three little heroes. xx

 

5 Options For Planning, Gratitude and Resilience

New Year, New Set of Plans.

Now that the holiday season has come to a close, everyone is heading back to work and school, the appointments are starting to flood in again and the possibility of overwhelm is high.

I’m planning on having a bespoke planner, diary and journal for all of us in our Mentoring Community to use in the near future but until that’s ready,  I wanted to share with you some good options for planning this year.

If you are looking for a good all rounder for a diary, a little daily gratitude to look back on and space for free flow notes and lists the 365 Daily Planner could be a good option for you.

For pure planning, appointments, targets, to do lists of who to contact and when a good diary can do the job. The Personal Daily Planner Organiser has no date constraints so you can start at any point. Simple and easy to use.

Maybe focussing on your goals is the key for this year. If so, the Inspire Now Journal would be great. Again, it has no date constraints so you can start it on whatever date you like. Think goals for your child but also goals for you to help build your emotional resilience. If you have it written down, I always think it is a bit like an agreement with yourself that you will put that time aside just for you. Book in the weekly run or walk with friends or the regular coffee meet up with a friend. Get it booked and get it  done – for you.

If 365 days of gratitude feels a bit overwhelming, ‘Natalie Fox’s 100 Days Of Gratitude Will Change Your Life‘ could be more doable. Forget the planning and focus just on those things. When days are hard and there are challenges around every corner, I find it really useful to write down at the end of each day the three things I’m grateful for. When I look back on my entries, be it something small or something big like the fact that we managed a family trip to the cinema without a meltdown which was huge progress, it all adds up. Sometimes we need to be reminded of the good and the great.

Lastly, anyone who has met me will know I do like a little bit of mindfulness and meditation. If you are totally new to this then you could start with the top line basics in this handy book, ‘The Little Book Of Mindfulness’.

Good luck. x

P.S.

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