Category: General

The Heart or the Head

Freddie got hooked up again today for another ECG before we got the results of him wearing a heart monitor for three weeks. That was eventful. For a boy who loves to press buttons, we weren’t sure how many of the readings would be real and how many would be Freddie just pressing the button. (He is only smiling because Ollie gave him his phone. He hates the sticky pads so anything to distract him.)

 

 

For two years now he has been experiencing, what look like, absence seizures. His Neurologist isn’t convinced because although they look like it and sound like it, they don’t happen often enough. The thing is though, nothing with Freddie has ever been straightforward black and white. I’m grateful it’s so sporadic and not affecting him all day every day but we really do need to find out what is going on. The parts of Freddie’s brain which haven’t developed typically, mean that we have always been advised to look out for epileptic activity. It’s so hard to know what we are seeing.

Anyway, the Neuro wants to rule out anything untoward going on with his heart before we have any more discussions.

Obviously, we don’t want him to be having absence seizures but if that’s not what it is. Then what’s going on?

So, after a fairly frustrating appointment (that’s a story for another day) cardiology are as certain as they can be that it’s nothing heart related. That’s a relief but now we continue without an answer. Back to the Neurologist we go. xx

 

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My Star of the NHS. I Salute You.

Dear Nicky

As we approach the 70th anniversary of the NHS, I want to thank you so much from the bottom of my heart.

Being told at my 20 week scan that my baby would be disabled but no one knew how severely, was totally shocking. Being sent home after the birth with no support and a ‘wait and see’ attitude from everyone around was frightening.

It wasn’t until we moved, when Freddie was around nine months old, that we met you Nicky. We had seen around four different Health Visitors between birth and nine months and none had really shown any support or understanding or in fact even read his notes. I hated those baby weigh in clinics. Then we moved and found someone who went the extra mile at every meeting and every phone call.

You made such a huge impact on our lives.

You read his file, you researched, you listened, you had experience of children who weren’t developing as expected. When you have no diagnosis for your child’s disability, it’s hard path. I remember Ollie and I going to the clinic to discus his nine month review. We started the questions and couldn’t answer yes to a single one. We felt so defeated and all the positivity (denial) we had forged on with was crushed. About half way though, it was clear we wouldn’t be able to answer yes to any of the questions. Nicky, you said we would leave it and not bother with it any more. Freddie was on his own trajectory so let’s focus on what he needs. Up until this point, no one had mentioned Physio, OT, play therapy, Portage or SALT. Bare in mind we had a paediatrician, four health visitors and the GP plus we had spent time in SCBU. We were pretty clueless.

 

You were the first person to really get it. You set up the referrals to the various therapies to support Freddie. If we hadn’t moved house and met you, I truly believe Freddie would have been a lot further behind in his development than he is now.

Thank you for caring, going the extra mile and making such a positive difference to his life.

Aimee and Family. xx

 

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7 Things I’ve Learnt From My 7 Year Old.

7 things I’ve learnt from my 7 year old.

Freddie has recently turned 7 and I’ve been reflecting on what a 7 years it has been. I’ve learnt so much more than I could ever have anticipated during this all-consuming, heartbreaking, joyful, overwhelming and love like no other time.

1. A wealth of knowledge. Considering I haven’t trained to be a Doctor, I have been asked more than once if I have a medical background by the medical professional I am seeing. I know more medical terms and information than I ever thought possible without actually being a doctor. All very interesting but I have to be honest, I wish for the most part, I didn’t know all of this.

2. How to communicate with family, friends and strangers with compassion, rather than anger. Both about our situation and in response to their, often misguided or insensitive, comments. This is a big one, not just for me but for so many families I know living in the SEN world. I’ve come to the conclusion that most people are good and kind. Most people don’t mean to upset you when they stare at your child. They are often just interested but can’t take their eyes away quick enough whilst their brain processes what they see. Many of the older generation don’t intentionally mean to use totally inappropriate language and ‘labels’. They use what they know from the era they grew up in. Most of the challenge here comes from a lack of education around these subjects. I see it as my ‘job’ to educate everyone on Freddie’s needs and this brings acceptance and inclusion rather than staring and fear.

3. Patience in the bucket load. For someone who is and always has been notoriously impatient this has been a very steep learning curve for me. I’ve had to learn patience in abundance. I’ve still not totally mastered the art but I’m better than I ever thought Iwould be. I’ve needed patience with myself, Freddie, life, the system and so much more. It’s an ongoing practice which I try to master daily.

4. People are kinder than you think. Most people want to help in any little way possible. Often they don’t know what to say or what questions to ask. They feel silly and unsure of your reaction. That old saying ‘It takes a village to raise a child’ is totally correct in my world. If you are feeling alone, vulnerable and isolated then just those few simple words ‘please can you help me’ often bring great reward. It takes courage to ask for help, I know. It might just be for something small but it might help you out hugely. Not everyone can help with everything but some people can help with some things. Those people might be friends, family or professionals. Give it a try.

5. You can meet some truly incredible people. This is certainly true for me. If I lived in ‘Plan A’ in a ‘mainstream’ world only, there are so many amazing people I would never have met. So many inspirational and kind people who I wouldn’t have the pleasure of knowing. So, for this I am grateful.

6. I am more powerful than I ever thought possible. This is you too. Eight years ago when looking into my future and the plans I had, I would never have believed how upside down my world would turn or how powerful and empowered I would become. I have had to get to total rock bottom before coming up and I still have those times when I feel broken but mostly I am up. I would never have imagined advocating for another human being in the way I do for Freddie and for the rest of my family. I would never have imagined I would set up a mentoring business to support other parents just like me. Building this tribe of empowered SEN parents is amazing and I love how far people can go with the right skills and mind-set. I never would have believed that after having Freddie and all the heartbreak and stress that I would think it was a good idea to have another two children. These three decisions have been three of my best.

7. Love. A love like no other. All parents out there will confirm, I’m sure, that they would lay themselves down under a truck if it would save their child. They would do anything for them. This is absolutely the case for me. Even when they are driving up the wall and back down again. As a SEN parent though, there is something even more primeval about it. I think it is because many of our SEN children can’t advocate for themselves, they are vulnerable and need support forever. The fear is real and the desire to give my all to Freddie and helping him achieve his absolute best is unmovable in me.

I love my husband and my three beautiful children more than anything. I’ve learnt such a huge amount in such a short space of time. I only hope I’ve got the capacity to learn more as Freddie grows and finally work out how to do fractions, tricky maths equations and English homework as Bella and Jago grow up. xx

 

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Happy 7th Birthday To Our Biggest Little Boy, Freddie.

Happy 7th Birthday to our biggest little boy, Freddie.

From being told at my 20 week scan that our baby’s brain wasn’t developing right. To the endless tests and scans. Being told no-one had any answers but being offered a possible termination, by panel, up to 39 weeks. Freddie was born, totally spontaneously, at 35 weeks.

We were so frightened that he wouldn’t arrive safely that we had no baby stuff at all. Nothing. We didn’t dare buy anything. So, during our stay in SCBU with the amazing staff there, Ollie went shopping. Greeted at the door of Mothercare, I think the shop assistant could see the look of shock on his face and took pity. Freddie was teeny so we needed teeny everything. She took him round the shop and he got everything we needed for the time being including a car seat to get him home. Thankfully a good friend of ours donated their old cot, feeding chair and travel cot. Phew. Ollie got the whole room ready and all the furniture built in time for his arrival home.


Even after all the scans we have, over 15 weeks, we never found out if our baby was a girl or a boy. We wanted to have just one surprise and surprised we were. Ollie was due on a plane that weekend for a wedding and my mum was away on holiday. She said as a joke, don’t go having the baby will you. She thought Ollie was playing a practical joke on her when he called Greece to tell her I was in labour. She managed to get on the only flight of the week out of there and made it back 24 hours after he was born.


With all the conversations we had with the professionals around what Freddie was unlikely to achieve, he surprises us each and every day. It hasn’t been easy and it will continue in that way but boy do we love and adore him. I don’t really believe in using language like ‘fight’ when talking about the challenges we face but in this instance, I will say that I have fought so hard every step of the way for my little teeny weeny baby. Right from 20 weeks pregnant to the grand age of 7. He might have nearly driven me crazy this week by saying “Mum” about 3 billion times (on top of the 2 billion Bella and Jago have said it) but what a star he is. We love you Super Fred. Xx

He was soooo excited when he saw his birthday gift. Ollie is pretty chuffed too, especially as he spent a few hours putting it together in darkness last night to be ready for this morning.

 

 

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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.

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