A Fair Chance.

So, a report lands on our floor today, the postman was oblivious to the fact he was delivering the most important report Chloe has ever had. 11 pages discussing for the first time all of her needs in education BUT this report also focuses on her holistically. Who she is, what her aspirations are, her strengths, her weaknesses and most importantly what should be in place for her to have a fair chance at an education. The only issue here is she is 13 years old and it all feels too little, too late if I’m honest. While this is THE report we have needed for her since she started school it’s more than a little bittersweet because who knows what could have been had she had this support when she was younger. It’s got aspirations and steps for her and the people around her to take to support those aspirations. These aspirations are focused on all areas of her life education, mental health, social and also focuses on her independence. It is a good report but do you know what the problem is? It is a piece of paper that will only mean something if the people that matter enforce the recommendations in it. The problem here is I have little faith that this is what will happen. This report is from a qualified Educational Psychologist and was commissioned by the local authority but I don’t yet believe that they will accept and follow it even though I know by law they should. This is because I have seen them ignore such reports for other children, this is disheartening and, in all honesty, makes me want to give up.  

I have been told repeatedly how Chloe was failed, let down, ignored or ‘missed’ but no one has ever taken responsibility, not once. I want to rage at someone, lay the blame on them. But on reflection there is no one person or even group of people to blame. It’s a systematic failure from a system that is not fit for purpose, and daily this system let’s many other children fall through the cracks and pushes families into feeling alone. While families are fighting for the best for their child, often feeling isolated and like they are failing, do you know what often no one tells these families? You are not supposed to do this alone, there is supposed to be professionals backing your child and family. They are supposed to be helped to decide what the best support is for the best outcomes for their child. You are not supposed to do this alone! There are people being paid to ensure that you don’t do this alone, I often wonder where they all were for the years we have been doing this alone.  

So, when someone finally steps in or steps up however you want to look at it, it can feel like a huge weight has been lifted from your shoulders. But and here is the catch, you are still going to have to fight, argue and chase people for the very thing your child had a right to all along. A fair chance at accessing an education and I mean really accessing it not just showing up to school every day and doing their work. I mean being given a fair chance to understand and benefit from their education. I will stress it is not this way for every child who needs support, some children will get every type of support they need and will have a fair chance, overwhelmingly this is not the case unfortunately. Equal opportunities for children with special education needs and disabilities doesn’t mean they will get an equal outcome, what is needed is fairness. My child may need more than your child to achieve their best outcomes. If we give all children exactly the same opportunities and support one child may thrive while another child struggles to keep up an inevitably falls behind. What would be fair in this situation would be to provide all children with what they need to thrive and achieve, that may mean some children getting more than others, not because they deserve more but because this is fair, this gives all children the opportunity to achieve the best they can.

I know your reading this and probably thinking she is banging on again about the same issue but here is the thing, this is the rest of these childrens’ lives we are talking about. It has been proven repeatedly that the earlier and more appropriate the support a child is given the better the outcomes. So yes I’m going to be banging on about this for a long time because this isn’t going to change overnight. Yes, I’m angry for my child but even when she is an adult and this battle with this system is over I’ll still be arguing for the right support for every child and family that is still to come up against the broken system. It is not about being proved right or getting praise for trying to make the world of special educational needs and disabilities a better place it’s about what’s FAIR. 

So yes, I am lacking faith, energy, sleep and f’s to give at the moment so for today I’ll put on some music, cry in the bath, drink some gin and I’ll be her mum but I will be ready to burn the world for her tomorrow if I have to.  

The System is Broken!

It’s been a long time since i have written a post, this whole Covid situation has meant there has been very little to say. In the background I have been busy trying to ensure the kids have been getting some form of decent education while homeschooling which was one of the hardest things i have ever done. I am very lucky to have Chloe and Lewis still in full time education during this lockdown and Elliot doing 1 day a week, we made the choice to send them back to school because of their Special Education Needs. Without proper full time education they would risk falling further and further behind, it has taken a lot of work to get the kids to the level they are at now and missing any more school would be detrimental for them.

Chloe is still attending her Pupil Referral Unit for children with mental health needs and disabilities and she is thriving, it is a small school with amazing supportive staff. Her ability to deal with her anxiety has improved so much since she has been at the PRU, the nurturing and supportive atmosphere at the school has changed how she feels about school so much. We are currently applying for an Education, Health Care Plan for her to try to get her educational, social and emotional needs met in school. She wants to learn and puts her all into trying but many difficulties hold her back. Having spent 10 year now dealing with the system that is in place to support children with Special Education Needs in both a personal and professional capacity I can honestly say I believe it is broken. I hear about parents everyday who are fighting for their children’s basic educational needs to be met, this system is not working and too many children and families are being let down. We are incredibly lucky to have Chloe in a school that is nurturing and is working hard to support her but this is a short stay school and may not be a permanent placement for her.

Unfortunately we have been let down at every step of the process that we are asked to follow, I have had professionals who work for the local authority tell me they cannot believe how she fell through the cracks. I have been incredibly lucky to meet some professionals who care and they are guiding me through a process that is at times confusing and feels so much more difficult than it should be. Even now we can see that the system is trying to place accountability on someone else or another service to try to get out of their responsibility to provide the support Chloe needs in school to have a chance to fulfill her potential. This is the system put in place to protect vulnerable children but it is oftentimes inaccessible, confusing and leaves parents and families with no choice but to be adversarial with professionals who’s job it is to support these children. I have heard from parents and carers who feel intimidated by the professionals who are supposed to support children and families, parents/carers who do not understand the language being used and the acronyms thrown at them. They are inexplicably expected to be knowledgeable enough to understand a system that these professionals have spent years training and working in. Parents/carers are often asked for their views and these views are then ignored, they are told ‘you know your child best’ and ‘every child is different’ before swiftly ignoring your input and applying what feels like the same standards and expected outcomes to every child. It feels like your opinion and often your own child’s opinion on a matter that can affect their whole future is just taken as a tick box exercise, parents/carers can spend hours filling in questionnaires and researching wanting the best outcome for their child and never see any consideration given to the thoughts and feeling that they were asked for.

There are some amazing, supportive professionals and non professionals out there and they are battling the same broken system that the families are fighting. We are not an underdeveloped nation, we can support these children and their families it is within our understanding and capabilities as a country to do the right thing but it’s not happening. Every time I hear a story of another family in this situation using the words ‘fighting’, ‘battling’ and ‘not listening’ it makes me despair, getting support for your child should never have to include these words. Inevitably parents/carers discover that the reason for the difficulties in getting the support in place comes down to one thing only MONEY, under funding and budget cutting are the root cause. Resources are stripped year upon year and when there was insufficient resources in the first place stripping them over and over again feels so counter intuitive. I have spent a lot of my time during this pandemic studying Specials Education Needs and Disability to broaden my knowledge and to help with my own struggle to get the right support in place for my children. It appears that there is a chain of problems that cause children and families to be let down, Government under funds Local Authorities and services who in turn have to under fund local services and in the end the people that suffer are the children and services who desperately need the services. This cycle feels as though it has been going on since the beginning of time but has been better and worse under different political parties and I wont use this opportunity to bang on about my dislike of a Tory Government or we could be here for a long time.

I came to the conclusion that I was living in ignorance of just how difficult it can be for children and families, I knew there was serious problems with funding and services but until you see the families affected by the issues you have no ideas of the damage this is doing. There are families in crisis, these families inevitably end up needing intensive support from far more services in the end than they would have if they had just been able to access the support needed in the first place. If instead of being placed on waiting lists up to and over a year long or being told no support is available these families were supported from the beginning these families may never reach a crisis point, this costs far more to local authorities and the Government in the long run. Besides the financial sense this makes surely from a humanitarian point of view offering support before crisis makes more sense, the trauma I have seen in some families caused by lack of services and support is most often entirely avoidable. It seems inhumane to me to wait until a family hits this crisis point before stepping in to offer support and services, allowing so much damage and stress to happen before accepting a family ‘qualifies’ for intervention is unnecessary and cruel. One of the biggest issues is unless it happens to your family or you see it with your own eyes you cannot possibly comprehend what damage can be done.

Every child deserves a fair chance at a successful and happy future but currently a lot of lip service is being paid to achieving this but nowhere near enough is being done to ensure this is a realistic outcome for many, many families. There are people out there, professionals and none professionals fighting everyday to improve the system and the services available and I couldn’t be more grateful for that but we need so much more, more people fighting, more people supporting those who are trying to change the system for the better. There is a long way to go, this is a marathon not a sprint but I have so much respect for the families and the professionals who are pushing for change, asking for better and are not willing to give up on the children and families that are only asking for the same opportunities as any child who doesn’t face these difficulties. When it come down to it all that families want is the best outcome possible from the education system for their child because they love their child, it’s not an unreasonable request to ask for your child to be supported when they have additional needs or disability so as a country we need to do better.

I Am the Mother I Am!

Chloe starts Merit her new school in 11 days. It’s a school with 38 students for children with physical or mental health issues. I filled in all the paperwork today and she has had a second look around the school and met some of the pupils. Two of them said they can’t wait for her to start. They think she is cute because she is so tiny and one said they loved her style as she dresses all in a style of her own which is brilliant. Meeting the staff and pupils has made me so much more confident in sending her there. Her being out of education for the last 3 months has been hard work and it will do us both good for her to go back to school. She has a full occupational therapy assessment next week to find out what her struggles are and she is being referred back to physiotherapy for some help with her core muscle tone and pain. I have a feeling she is going to continue keeping me busy for a while yet either her gastroenterologist appointments on top of all this.
Lewis has been away on his first residential trip since Tuesday from the pictures it looks like he is having a fantastic time. I can’t wait to have him back on Friday evening I have missed my squishes with him that’s for sure. Elliot has been put today to buy some Valentines gifts for his girlfriend which is really sweet. His card is lovely, he is growing up way to fast and is now taller than me. He will be 14 in April and I still feel 20 so it doesn’t make sense to me.


There have been times in the last few months where I have really doubted my parenting because of what has happened with Chloe, I feel like I sent her into the lion’s den when I sent her to a mainstream high school. Between her being Transgender and all of her health issues I did think it probably wouldn’t work put for her there, but I never thought it would fall apart so badly and so fast. I have tried everything to help her for years and have been turned away so many times by people saying they can’t help her or she doesn’t fit their criteria (must be my least favourite excuse). Now I have an army of professionals helping and I couldn’t be more grateful and to hear them say over and over why wasn’t she helped before, that she should never have been allowed to go to a mainstream high school and that they can see how hard I tried eases my worries a little.
So, I have looked at it this way

I am the mother I am,
I can’t be anything more
I have loved them, fought for them
I have knocked on every door.
I can’t be a superhero
I can always do my best
There are times I need help
And times I need a rest
There is no shame in not coping
No shame in needing to cry
I have never given up
Just harder I try.
Even if they never know
All the time and energy and feeling lost
To get them the best I can get
It was always worth the cost.

Life and all that jazz.

Robyn prefers to be called Chloe and after 18 months of her being consistent
in this I have decided to try my hardest to call her her preferred name. She
hasn’t attended school for a long time now due to illness and we have been
offered a place in a Pupil Referral Unit for children with mental health needs
and medical needs. It would be great to get her back in full time education for
her social needs as well as her educational needs. It’s is over 4 miles away so
she would need local authority provided transport and that makes me nervous. I
don’t relish the idea of having 3 children in 3 different schools that’s for
sure.

Chloe had her dental surgery in December, she was brave considering she
ended up with a mouth full of stiches after they cut into her gums to remove
impacted teeth. She struggled with eating for a few days, but she muddled
through and was healed enough to enjoy her Christmas dinner. She has an
Endoscopy tomorrow to look for reasons for the huge increase in her reflux
symptoms she has had since birth, she vomits daily sometimes numerous times a
day and has burning pain in her chest all the time. They will look for any
internal issues and take biopsies from her stomach to see if they can find
anything. She has been attending Cognitive Behavioural Therapy for over a month
now and the therapist suspects she has Agoraphobia which causes her anxiety. This
is why she has struggled so much in a high school with over 900 students. We
hope with the CBT she can earn to manage her anxiety and get back into
mainstream school in the future.

Lewis turned 9 yesterday and the older he gets the more I see the person he
is becoming; he is funny, kind and cheerful which is amazing considering the
medical and educational problems he has encountered in his life. He is going on
his first school residential trip next month and I am nervous about it, but he
could not be more excited. Its only for 4 days but I will miss him and his
cheeky face. He has overcome so much, from the premature baby who wasn’t expected
to survive the first night, who was diagnosed with brain damage at a few days
old and couldn’t eat or drink without tubes fully until was 2 years old to a 9
year old who works hard at school and makes me laugh every day. He had a great day on his birthday dressed up as Woody from Toy Story and playing with his friends.

Elliot is a fairly typical teenager; he is at times grumpy and shuts himself
in is room on his PlayStation and at other times he watched films with us
eating sweets and can be an excellent big brother. He works hard at school and
his reports always show he is well behaved. I am constantly grateful he is healthy,
and I don’t have to worry about hospital appointments and operations for him.
He gets and needs a lot less time and attention from me which makes things easier,
but I do feel guilty as I think he probably needs more from me than I give him.
He has tolerated a lot with the things that go on with his siblings and my
health, he never complains when I am busy with everything and always tried to
be kind and helpful when Chloe has an operation or appointments and is taking
up a lot of my time. He also has had to cope with big changes to his life with
Chloe and mine and his dads divorce, he makes me proud.

It’s been a busy few months and it’s not looking any less busy in the future;
we have an appointment in London at the Gender Identity Service for Chloe at
the end of this month then she will be getting her first removable brace not
long after that. There are a few hospital appointments for me and the process
of getting Chloe into her new school and then hopefully we will get a few months
of peace.

 

 

It’s the most stressful time of the year.

For Robyn the last few months have been tough, her health has been a big issue as has her anxiety. Moving up to high school has caused a lot of issues, she now isn’t attending school as the impact of the huge change it presented caused her gastrosophageal reflux disease to become much worse. She has been vomiting and feeling ill for a few months. She was absent from school ill and being sent home so often the school agreed it would be better for her to do some online schooling until after Christmas, we will review this situation with support from school after Christmas. She was referred for a wheelchair by her peadiatrition to help with her joint pain and tiredness and we are now waiting for the wheelchair to be delivered.

We have changed her medication with the help of a peadiatric gastroenterolgist and are waiting for an appointment for an endoscopy with biopsies to be done under general anaesthetic to try to find out what is causing the reflux to become so much worse. They feel it could be allergies but it also could be her anxiety causing the increase in severity. This procedure will likely happen in December or January and will most likely be a very stressful time for Robyn as she gets very anxious about medical procedures. She has been referred to Occupational Therapy to be assessed for aids to help her at school and at home. She is tired much more often and in pain, uncomfortable and struggling to get to sleep at night. She has also just started Cognitive Behavioural Therapy with CAMHS to help with her anxiety and we hope this will also help with her reflux and tiredness. The therapist after assessing Robyn feels she may have Agoraphobia which is causing most of her anxiety. She anticipates having a diagnosis for her mental health issues in a few weeks.

She also now has a date for removal of 4 impacted teeth which she will be under general anaeathetic for. This involves cutting into her gums in 4 different places and removing them and stitching her gums back up. She will not be able to eat solid food for around a week. Her surgery is in less than 2 weeks and she may need to stay overnight, trying to arrange childcare for the other two kids between Steve being at work and me being at the hospital for Robyn is a bit of a nightmare. The day before her surgery we are due in London for an appointment with the Gender Identity Service to discuss the next steps for Robyn. It’s going to be a busy month as Robyn also has an appointent with respiratory consultants and then there is all the usual mayhem of December with school performances and Christmas plans.

Another huge complication for Robyn is that puberty has arrived, this means we need to start the journey for puberty blockers which is what Robyn has said she wants. It’s a long process and requires blood tests and bone scans before we can get to the stage that she can be prescribed puberty blockers. Once they are prescribed we have to hope that our gp practice will agree to administer the blockers as many doctors are not comfortable with this. She is so worried about puberty, these changes are very stressful for any growing young person but for a trangender child this is a whole different story. She is scared that her voice is going to change and that she is going to become a man. She said to me that if that happens she wont be her, she wants to be Chloe, a girl who will become a woman, not someone who is growing into a man. Although i cannot possibly understand how this feels to her logically i can see that the idea of your body becoming more and more masculine when that feels so wrong must be so upsetting and stressful. I can’t do anything other than reassure her that we will do everything we can to help her.

I have never wanted to change things for one of my children so much, i can’t begin to understand how all of this stress is affecting her. Life just keeps throwing things at her and i want to just take it all away for her.

Positivity Isn’t Always the Answer.

I wouldn’t say I put on a brave face, but I like to think I keep a positive attitude, but again lately the mask is slipping. Another surgery in 8 days, more medication added to my daily routine. I am tired, I’m tired of operations, medications, appointments and keeping up a positive attitude. This next operation will be the 4th in less than a year and I’m tired of them and I’m tired of feeling the way I do. My life feels like week after week of sorting out mine and the kid’s medications, going to mine and the kid’s appointments, worrying about what is going on with mine and the kid’s bodies, the pain I and Robyn are in. This sucks.

There is nothing I can do to change any of this, and I know that but that doesn’t mean I can’t be tired of it all. It’s not like I don’t have a great life, I do. I have 3 amazing children and a partner who tells me every day that he loves me, I have amazing friends who are always there to listen. I don’t need more than that, but I do need less of the medical things. I would do anything for the kids, there is nothing that I wouldn’t do to help them and to try the medical problems they have from disrupting their childhood. I think having the same condition as them mean I know where they are heading, I know what might be coming for them. All the pain I have every single day could be their future and I hate knowing that more than anything in the world.

I spend a lot of time trying to be positive and actively trying to make the best of this situation for me and the kids but I’m really tired. The pain disturbs my sleep every night and getting out of bed in the morning is harder than you can imagine. I just need a break, mostly from my brain and the constant worries and planning of life around all the appointments. I talk to my friends a lot about the kids and my health and then spend a lot of time feeling bad for moaning at them and not having more interesting things to talk about. They are fantastic friends and listen and advise and I couldn’t be more grateful, but I wish I had other things to talk about, but all that stuff is my life. I am very aware that here I am complaining again but I have to get this feeling out or I will go crazy.

So, what can I do? I have no idea at the moment, September is a month of lots of changes the kids start a new year at school. Robyn started high school which caused her and me a lot of anxiety. She has already been bullied for her speech on her second day, her eyesight is declining all the time and she is having more and more problems with blurry vision. The pain in her legs is getting worse and her gastric reflux is causing her more pain her chest every day and there is nothing I can do. I try to keep positive for her and tell her I understand but all I can do is give her pain relief and worry about how much worse this could get for her. Can you imagine starting high school as a transgender child with eyes that are wobbling and turning in all the time, with a speech impediment and learning disabilities. High school is hard enough without all of that, I just want to take it all away for her. I’m her mother it’s my job to fix things for her but I can’t.

When you have children, you expect to worry about them, you expect it to be hard at times. I never expected the guilt I feel from not being able to make things better for them, I never expected to have to worry so much about their future. They may never pass exams or find it easy to get a job. Robyn will always find it hard to understand the world and the expectations of her from society. Her anxiety will make life so much harder for her and I can’t fix it. I am raising good, kind children but I worry that won’t be enough to make it easy to survive in the adult world. Positivity isn’t always enough; hope isn’t always going to be enough. So, in all honesty I don’t know where I’m going from here. I’ll keep trying to do whatever I can to make life as easy as I can for them all because that’s the best I can do. I’m not sure it’s going to be enough but I’m going to keep trying to have positivity even when I’m tired and I’m not sure if what I’m doing is going to help.

High School Heebejeebes!!!!

I haven’t been getting much sleep lately, I think I am anxious about the coming return to school for the kids. Robyn is extremely nervous about high school, it’s a big change for her and she feels like she will struggle. The high school have made lots of accommodations for her like a lift pass so she doesn’t have to walk up and down the many, many stairs in the school and a pass for her to leave lessons 5 minutes before the classes change over so she can have more time to get to her next class without the corridors being full of other children.

I think it will be fine once she has got used to the swing of things but going up to high school is scary enough without being a disabled transgender child who is worried about people bullying her for funny eyes as she calls them, her speech, her learning disability or the fact that she is transgender. She is braver than I will ever be, I can’t pretend I’m not scared for her though. I reassure her daily that it will be ok and her confidence has been boosted a little by the fact her friend who is also transgender is starting high school with her.

Elliot is going into year 9 and is working very hard, he puts in a lot of effort at school and is really I interested in his science lessons. He doesn’t let his dyslexia hold him back from his dream to be a paleontologist. His knowledge of dinosaurs amazes me and he has shown a lot of maturity in his emotional intelligence. He has told Robyn he will look after her in high school and if anyone is mean to her he will protect her. I couldn’t be prouder of him.

Lewis is still in primary school going into year 4, he is nervous about his new class as he is every year but I think he will soon settle in. He has made lots of friends and his school reports tell me he is a happy, friendly, superbly well behaved little boy. He is such a loving child and he is always looking for hugs and cuddles which I am happy to oblige as they are growing up so fast who knows how long I have until he doesnt want to lie in bed cuddling watching movies anymore.

Times like this when life is busy like this week with 4 hospital appointments in 4 days taking a little time out to cuddle and chat with Lewis is exactly what I need to remind me my life isn’t all appointments, medications, school meetings and stress. Life is so much more than that but it’s hard to remember that at times. I have loved having so much time with the kids since its the summer holidays. We have lots more fun plans to come and that’s what I’m focusing on for the next few weeks.

Feeling Resentful!

There is a saying I have seen many times it goes like this, ‘The thing about pain it demands to be felt’, it’s so, so painfully true. In the last few days I have gritted my teeth, lost my patience and cried when no one was around. There are times when the pain can be hard and then there are times like this, times when this pain makes me sad and tired. It’s so all consuming, so overwhelming that it’s hard to focus on anything else for any length of time.

I want to scream, to blame someone and have someone take it all away. It makes me grumpy and I don’t like who it turns me into. I write poems about how much I hate it and I try to distract myself with anything and everything I can think of. I’m just so angry right now I’m sitting here in too much pain to sleep just feeling the anger build up inside me. This isn’t who I want to be, I believe I’m a nice person for the most part but I don’t feel like being nice right now. I feel like shouting at everyone, smashing things and just generally having a huge tantrum.

Sadly, I’m not a child and that sort of behaviour isn’t acceptable for a 31-year-old mother of three who is supposed to be responsible and mature. I just don’t want to be the person I’m being right now, I just want to be less grumpy and angry. I keep trying to remind myself that this has happened before on many occasions and it won’t last forever it just feels like it will. So, I guess I’m rambling here as a distraction and because putting it down on paper (well screen) is in some way a relief.

So yes, the thing about pain is it demands to be felt I just wish I wasn’t feeling it so much right now!

This pain is unbearable, dragging me down

Drowning me slowly, sucking the life out of me

Exhausted bitter and sad I feel less

Less of a person, less useful, just less

Pain overwhelms

It steals, Its spreads its long dark fingers into every inch of your life

It snakes its way into you constricting everything taking away your breath

Its insidious and I’m resentful

Resentful of its dominance, Its vice like grip on my body

Just resentful.

3 Years Later………………

Robyn has been living as a girl for 3 years now and for a long time I have rarely thought about her being anatomically male, it crops up now and then and surprises me. She is about to finish primary school and start high school, this is what worries me most. I worry about her adjusting to high school but more than that I worry about how she will be treated because she is transgender. So now I am spending more and more time thinking and worrying. I wish I could switch off the part of my brain that overthinks everything, to be able to just let life happen and deal with it as I go. Unfortunately I have the type of brain that worries and tries to plan for every scenario that I can think of.

I want to protect her from every possible problem that may happen, being transgender is not the easiest life to live, I wish it was but society has still not come to easily accept that people can be born transgender. She is consistently open, honest and brave about who she is and that makes me proud every day. The challenges she is facing without even considering her being transgender, her speech problems, her eye problems, her learning disability and her medical issues already make her life more difficult than the average child. Being transgender adds a whole new kind of difficulty to life and all of it every last bit is caused by society and its refusal to accept that being transgender is not a choice.

I realise now that just because we understand and support her doesn’t mean everyone else will and that I will never be able to change that for her. I have to understand that it’s okay, it’s okay if people find it hard to accept who she is because she is happy regardless. I promise myself on a regular basis that I will worry less and focus on just letting life happen, I realise that will never happen and that too is okay. I know I have spent too much time focusing on the feeling of being judged for allowing Robyn to be who she knows she is. I intend to focus more on not letting that feeling affect how I support Robyn. I have hesitated over and over again in certain ways I could support her in some situations, I don’t speak up as loudly as I should for her. I fear confrontation so often that I have not defended her when I should have.

If she can show the strength to live her true self then I can be braver in the situations I would usually shy away from. I should learn from her because she is so much braver than I have been. So, when she goes off to high school I will remind myself that all of her life so far she has shown me she is stronger than I have given her credit for. That worrying about situations that haven’t happened and may never happen won’t change anything, she will handle high school and whatever comes with that with the same strength she has always shown. I will have faith that I will deal with whatever comes with the same attitude she has. I will not be scared to call her my daughter to anyone and everyone, and I will not shy away from showing how proud I am of her because I’m scared of confrontation. My children are everything to me. its my job to stand up for them and Robyn deserves every person who loves her to trust she knows herself, to respect her decision to live as the person she knows she is.

She is my beautiful daughter and If she can be brave then so can I.

More and More Medical Misadventures

My permanent sacral nerve stimulation device was fitted almost a month ago and I’m going through the settings to find the best programme for my bladder to work properly. these implants are very expensive and I am very grateful for the opportunity given to me by the NHS to have a life changing device. I am already feeling the benefits of much less pain from my bladder which is fantastic. I carry my battery around with me all day everyday in case I need to turn the device off at any time. It’s become second nature to have it in my bag wherever I go.

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Life with children with EDS can be at times stressful in the last few weeks we have had 3 opticians’ appointments with Robyn due to a turn returning in her left eye. She had new stronger glasses to try to correct the turn but this has been unsuccessful so she has been referred back to the hospital to see if we have any options left to try to fix the turn. The appointment came through for next week already which is fast. Surgery is an option but Robyn is not keen on having a third eye surgery. I also found out she doesn’t have proper 3D vision as she should have and there is nothing that can be done about it which is a shame but as she will never have been able to see any differently, she will never know any difference. She has 2 hospital appointments in the next month for her dental problems. She is waiting for surgery to remove 4 teeth that are stuck up in her gums which you can see in the picture below, then she will have 2 years of braces to try to get herteeth into the normal positions. She is also being referred for counselling to deal with her anxiety which she has suffered with since she was very small. So, shehas definitely been keeping us busy lately. robyn teeth As for Lewis he has been referred to Endocrinology to see if he fits the criteria for growth hormone treatment as he is still groeing at a very slow rate. He was also diagnosed with severe constipation due to EDS this is a common problem for EDS patients as the condition can cause the gut to slow down its usual processes. He has been prescribed two medication for long term use. He had a week off school while we gave him a ‘clear out’. This is likely to be a lifelong problem for him; I know that problems related to them having EDS will probably crop up throughout their lives which is a shame for them both as the condition can affect many internal organs and many of the joints in the body. Robyn’s pain has been increasing lately in her legs so we are going to try some new physio exercises and I have been trying some massage to see if that helps. Every night she takes a hot water bottle to bed to ease the pain on some of her joints. I wish I could take away all of the problems the kids have, give them a more ‘normal’ childhood. They just get on with it and other than the pain Robyn suffers they hardly complain about all the problems they have.  Im proud of how they put up with all the medication they have to take and the symptoms they put up with. All three of the kids are good, kind and helpful and I’m proud of them all.