Routines...

..it was definitely a routine thing rather than his voice!
Suitcase appeared today and M was insistent on saying "bye bye" to it.
Some may remember me attributing his regular and very violent meltdowns last term to being a change in routine (no suitcase, therefore no overnight stay at school) and perhaps it being his voice that he wants to be with peers. So, now he's in the new routine of no suitcase, it reappears and he says "bye bye" to it and I had to hide it in my room to avoid a meltdown... that definitely is a change of routine thing and not his voice saying he wants to be with peers. I don't doubt he will have a lovely night tonight with his peers (suitcase was sneaked on bus after him) but when the routine is to change again, I hope there is a good plan in place. I am so scared of going back to square one.
Some say we need to differentiate plans due to institutionalising children and routines. Those people should live through the effects of that, and then write their unfounded thesis'.

Don't be complacent

A lesson learned. I dared to think M had calmed but a change in routine resulted in a mega meltdown. Followed by an odd request for a shower mid afternoon. Those who know M know that's almost unheard of. Hesitantly, I obliged. Showers alone can cause eruptions. He was so calm throughout. Small giggles at our usual games that I use to try and make showers a positive experience. It felt as if he knew he needed the experience to calm. I don't know if it was sensory or something else but it worked. 

After, he went about his day, tired and a little grumpy but I knew he was "OK". 

I was left drained. I'm so pleased M has a Carer tonight. Time for an aching arm that took the brunt to rest. Time to recoup. 

I love my boy with all my heart but sometimes it just breaks that heart.  It's actually more painful to think how M feels about something he cannot control. I simply can't imagine how he feels. Anything I feel pails into significance.  If I could trade, I would. 😢

Autism Awareness month............

All too aware in this house, especially this year!

It helps that I am trying to understand him but it very nearly ripped us apart..physically and emotionally.

So I'm not going to write a massive awareness blog... I am just going to share a picture I painted of "M's world" It maybe says more than I can.

Another big decision...

So I've been on a bit of a journey this year... In my head. If anything good has come from the crisis recently, it's realising I can do what I want and should not feel guilty, thus choosing the wrong path, out of that guilt. 

Going into healthcare after M has left home was out of guilt. I still want to use my experience to help others but the only real way that can be done is not on the shop floor. I have seen the restrictions in the current service provider climate despite the best and genuine intentions from professionals. I will always continue to help and support my friends and local initiatives. 

As part of self preservation most of you will know I have rekindled my passion in Art. I have a lot to learn but I am loving it. I have enjoyed escaping into a creative world. I have enjoyed making people smile along the way. I'm not ashamed to say it has boosted my confidence and self esteem. This is where selfish me has emerged. I don't know where it will lead me, but I have a month to get my portfolio up to scratch.. For an interview.. possibility of studying Art and Design at the local college. Just a little bit excited! 

Purple day. Epilepsy awareness day.

Today is purple day for epilepsy. 

Regular followers of my blog will know how the ketogenic diet has been our miracle. But I will never lose sight that it might stop working and the horror that is epilepsy. 

My "on this day" on social media is a reminder as I read of posts from years gone by. This one from two years ago today says a lot: 

All morning I have been spamming your feed with posts about epilepsy and purple day. If it helps just one more person understand it a bit more, then its good.

This post is a personal account of how it effects M. The seizure monster as it is un-affectionately known decided in 2007 (maybe before but undiagnosed) to plant its evil self in dudes brain. It began with what are known as absence seizures.... look like daydreams. And then one night he had his first tonic clonic. this is the one most people would associate with epilepsy...the one where the person shakes amongst other horrible things. This prompted further testing and eventual diagnosis of a seizure condition. Originally thought to be caused by a neurodegenaritive condition but now believed to be due to a mix of all his diagnosis. Thus began the rollercoaster of medicines to try and get his seizures in control. OMG, how frustrating is that process. Every new med suggestion gives you hope... till the seizure monster just laughs at it and continues to attack my beautiful boy. His seizure condition has progressed and is still uncontrolled. He has nocturnal tonic clonics. daily absences. He also has complex partials...these can be where just one arm has involuntary movements, or a lip quiver, or eyes going off in their own direction..can manifest in any given way. he has drop seizures. Just drops to the floor. he has atonic... he can go floppy and unconscious without warning and prolonged.  Recently he has added gelastic seizures to the mix. these are extremes of laughter or crying or both. We are about out of options for drugs for seizure control and are considering VNS or ketogenic diet.

Heartbreaking. 

Last year I had to resuscitate him.due to a seizure.... no mother should ever have to do that to their own child. Doesnt bear thinking about what might have happened if I hadn't had some first aid training. Epilepsy can kill. I very nearly saw this first hand.

Epilepsy means carrying around of controlled drugs, being prepared for anything at any time... dreading going into your childs room of a morning if they're quiet. 

I never get used to his seizures... each one rips a piece of my heart away... each one takes a little bit more of my boy away.

I urge everyone to make yourself aware of seizures and epilepsy and first aid... you may just save someone's life... someone's son.

#purpleday #epilepsyawareness 

Feel free to share...all awareness is good.

M's shoes

M's shoes. 

I see your tears fall silently, mum. I know how I am sometimes, makes you sad. It makes me sad too but I don't always know how to control it. Frustration fills my bones. I wish I could speak in the complexities of your language. I do try in other ways, but the expression sometimes manifests through hurting you physically. When I'm with others I sometimes feel like a pressure cooker. The world is full of noise. Sometimes noise makes me laugh but sometimes that noise fills me with discord. I become afraid. Pressure builds up. When in your company, I feel safe. Safe to pop. I do pop. A cuddle should comfort me but I feel restrained. I do try to calm myself. My washing machine spins. My head in tandem with it, calming me. I appreciate how you feed my need for same and routine, indulging my obsessions. Obsessions that stimulate and speak safety. I love how we laugh at the silliest of things. I know you try to understand my every move, thought and feeling. I know if you could walk in my shoes and make it right, you would.

Sotos Syndrome research need's YOU!

https://medium.com/@claire.williams/can-you-help-with-a-sotos-syndrome-study-d9608f5d4940#.viy4rhju7

Can you help with a Sotos Syndrome Study?

Chloe Lane is studying for a Ph.D. at the University of Sheffield. She is looking for both children and adults with Sotos to take part in a research project to find out about the cognitive abilities of individuals with Sotos Syndrome.

The study will involve using a number of different tasks to measure abilities such as remembering information, understanding a conversation and making patterns.

All individuals who take part will be given detailed feedback about how well they performed in each of the tasks and this report can be given to teachers, employers or anyone else who would benefit from having a clear understanding of the cognitive strengths and weaknesses of the affected person.

She is hoping to recruit as many people as possible so that we can gain a really good understanding of the cognitive profile of Sotos syndrome. Once the research has finished, she intends to produce a detailed overview of the findings which can then be given to schools. This will help teachers to understand what to expect from a typical Sotos child when they first start school or move to a different school. For more information or to take part please click here. You can also email Chloe who will be happy to answer any questions: clane2@sheffield.ac.uk.

Establishing the Cognitive and Behavioural Profiles of Sotos Syndrome

Thank you for your interest in our research. We are currently recruiting adults and children with Sotos syndrome. Taking part in the study will involve completing a number of different tasks designed to measure abilities such as remembering information, understanding a conversation and making patterns. The study will take approximately 60 minutes to complete and regular breaks can be taken if necessary. This part of the research is only open to families in the UK.The second part of the research involves completing an online questionnaire. The questionnaire is designed to measure personality and behaviour in individuals with Sotos syndrome. This part of the research can be completed by families from any country. The minimum age for the study is 2.5 years.
Once this form has been completed, you will be sent a full information pack and/or a link to the questionnaire. Completing the form does not commit you to taking part in the research and you are under no obligation to participate. The study has received ethical approval from the Department of Psychology, University of Sheffield and is being supervised by Dr. Megan Freeth and Dr. Elizabeth Milne. The details you enter will be stored safely in an electronic database which is only accessible by members of the Sheffield Autism Research Group. We value your privacy and no details will be passed to any third parties.
If you have any questions, please email: clane2@sheffield.ac.uk

When people stare...

Humans are curious. it is one of the great qualities to that make humans human. But it is so great? What about when they stare at your disabled child? Over the years I have read and heard differing opinions and stories. Some heart wrenching, some slightly funny, some displaying a general lack of education and some just plain cruel.

Here's my thoughts... The most poigniant incident was when M was a baby. Soto syndrome can cause a devastating level of enamel dysplasia. (Enamel dysplasia is a condition that affects the normal levels of one's tooth enamel. A form of exceptionally hard tissue, enamel acts as a protective outer shell to cover the part of the tooth that contains the sensitive pulp, dentin and cementum tissues.) When M's baby teeth came through they were a greenish colour. No amount of brushing was going to make them white or magic up some enamel. While out with him I heard a little boy say to his mum "Mum that baby has got green teeth, Yuk!" Through ignorance or similar her response was "that's what happens when you eat too many sweets" I was cross. how dare she say that about my baby. My baby who struggled to take his feed orally, never mind be old enough to be weaned long enough for food to cause tooth decay. My baby who struggled daily to survive. Constant reflux adding to his oral problems. How dare she use my baby to make a point about sweets to her child? I don't know what reaction of hers would have been best or better. Certainly not one that made me feel like an inadequate mother. Through the years people have stared at M for his differing disabilities. One little boy who made me chuckle said "I want a wheelbarrow to ride in too" I distinctively remember his mum telling him "it is not a wheelbarrow, it is a wheelchair because the little boy has poorly legs." I liked that. No"shushing" him away, no reprimand causing negative associations, no awkwardness... just a plain sentence. The little boy paused for a moment, I suspect digesting the information, and then carried on looking at the world in wonder.

I could fill this blog with similar stories. As much as there is a need for education amongst society and how it sees "different" to their own ideas of conventional,  I, went on a journey of discovery learning how to deal with staring. Because, lets face it, the journey has more urgent situations that need precious worrying energy. So below was something, some call it a mothers love letter,  I wrote quite some time ago, to make sense of it. I hope it helps someone somehow..

Eyes Full Of Love

You know something? I was asked today about a couple of things that got me thinking. The grey matter in my head started sparking little currents of electricity and thoughts started running wild. I have something that I really want to share with you. Most of you are already aware that I do not, and never have, considered myself unlucky when I look at my child. He is very special and means the world to me!

I can almost hear you asking where this is leading. Well, have patience please – I’ll take you on a road of wonder. A road where not all things are as they seem. A road that some people will recognise, but most of the people in the world would disagree. A road that you may, I believe, already have some knowledge and memories of. The road is one that has been very well travelled by many, many people in the past and is still waiting for navigators of the future. A road that is seen differently by everyone. This story tells you of my travels down that road today aided by remembered journeys made over the last few months.

Some people look at M and see him through cloudy eyes that are filled with sad and disjointed views of normal and perfection. M, to me, is perfection! He is a child as any other, and was born for a reason. M has no preconceived ideas about the way people look at him. He has no idea about the difference between a good person and a bad person. He sees nothing but good in everyone and everything. He is a child so full of love and courage, determined to seek the good that is within him and find it everywhere he looks. Okay, M is a child with a disability. A disability that no-one could fail to notice – not a blind man, not a deaf man. But M is only disabled when compared to the average walking talking humanoid on earth. So he cannot and will not ever run? So what? That doesn’t take away his right to live a happy and peaceful life! So he cannot and will not ever eat? So what? That so called disability may just save his life. So he cannot and will not ever talk? Well, you are so wrong with that! M does speak – he just does not use his mouth! Look at M’s face – see how it lights up in the brightest “hello” you can see? M speaks with his face and his beautifully expressive eyes! M tells you he loves you – just look into his eyes – so full of love and joy – anybody and everybody can see it! The love M feels comes directly from his heart. You can see the love shining from his eyes whenever you look at him! M is happy to be here – and he wants everyone to know! All the people that know M love him. M has that ability – the ability to melt your heart with love and compassion. The ability to make you see past his obvious disability and see the courageous and determined child that only wants to be happy.

It is not M who has the disability; it is those who fail to see past their own eyes that have a very definite disability. For they have failed to see the joy and love that is there for the rest of the world to see. They cannot see that this little child is not ashamed or angry at what life has given him. They fail to see the innocent beauty of a child who is so wonderfully happy to be in this world of ours. They only see the wheelchair and what that wheelchair means in their much neglected minds. They cannot see that the wheelchair that would act as chains to them, is this little boy’s escape. The freedom that they take for granted is only given to M by the use of a wheelchair. But M sits proud and strong and does not see the looks of pity. He sees not that people see no further than his chair – and if he did see what they saw? He would smile wider – he would love harder. Why? Because M is a child with an advantage on us. M’s advantage is that he sees nothing but love and joy everywhere! Love and joy when others around him are seeing normal – plain, bog-standard normal. And all that comes with it.

I am lucky – very lucky! For I have a son who is loved by everyone who knows him and some who do not. M is lucky – very lucky! Probably far luckier than any of us. For he sees only the beauty in the world that surrounds him. A seagull making loud noises – that is a reason to smile for Michael. A tatty empty crisp packet? Rubbish to you and me? – Oh such joy does M find with that! Windy weather blowing every which way – for M that wind is like a strong breath of fresh air stroking his cheek. The rain that falls and means changes of plans to the day’s activities – you should see the sheer exhilaration on M’s face as the raindrops splash and tickle his face!

Someone asked me why he has to suffer so? How can I watch him perhaps daily or sometimes hourly struggle with pain? Sure, M feels pain. Such a tremendous amount of pain in one so young has been unbearable to watch. But M is still here fighting for what M believes in. He has had several opportunities to “opt” out of this life – but he has fought to stay here on earth with us. He will not give up – he has too much living to do. He is a strong determined little boy who will not give less than 100% to everything. Even when he is so very, very poorly he tries to show his happiness in life, by trying to smile and laugh – if he ends up crying it’s not because of the effort to be happy. M is a little boy whom I believe has been kissed by an angel – and he has the mark to show for it. He is nothing other than a blessing sent here for me to love, he is my little angel here on earth and nobody should pity him. Feel sad for him because he is struggling – yes. But not pity – because M doesn’t want or need your pity – all M wants is the chance to continue his unique, happy and loving life in this wonderful unique world of ours.

So now the journey comes to a pause. Junctions appear in all roads. They are the points at which the journey may change direction. I’d like to think that M’s journey will become pain free. But, perhaps, most importantly, I would like to see my little angel shine bright for now and evermore in the knowledge that the world can see him for what he really is:

M. T. H.  – A superbly happy little boy. Bless you M Love you forever and beyond, Mum. xx

Am I the only one?

...who finds parenthood sometimes very groundhog day and boring? I know my state of mind is corrupt right now due to pure exhaustion but I'm quite frankly, bored!

I cant get him to leave the house take him out right now. I am grateful for a weeks school holiday so routine can be kept... but its very groundhog day! People say, when something happens, never a dull moment. It is, however, dull. Those moments and situations may be hard and testing, but they're not exciting in the way I crave.

Sure. I get the cuddles and smiles and all the things that fill every mothers heart with full to overloading emotion but I also get the tedious rigmarole that keeps his world safe. Day after day routine is kept. Medical and life giving procedures repeated. A constant battle between keeping his world safe with routine but balancing that with my need to try new things with him, in the hope that I may stumble across that one thing that makes him smile that bit more.

I'm missing my little doggy so much it physically hurts. He went to live with another family just over a week ago. He became very scared by the noise of meltdowns. Those who know me, know my background in animal welfare means I will not compromise the welfare of an animal for anyone or anything. But i miss my little piece of sanity in these four walls. My cuddle at 9 or 10 pm when the child sleeps and I go to being "on call" rather than actively "caring" My little pair of fluffy ears who listened to my morning grumbles when child wakes at daft o'clock. My loyal loving shadow. He is though, happy in his new home with his new human and doggy friends and I am pleased I was brave enough to not let him endure the situation.

Life will get better, I'm sure. I will get the respite I need, the time to be "me" for a few hours. The time to recharge ready for the tedious life. The time to appreciate the positives. it will happen. Grant me patience to get there, and forgive my current self pity ramblings!

One day at a time

Seems ages since I posted. I guess it is. Life has consisted of meetings and scrutiny of our lives and how best to move forward..safely. I am exhausted. Due to the care package breakdown (circumstances beyond the control of myself and the agency), I am not getting the full quota of respite I should and it seems it will be a month yet before I do. The irony is extra care has been (temporarily) approved for during the week but due to care package issues, that's an uphill battle. They are training and shadowing. This adds to M's anxiety. (and mine)

I am having major wobbles about finding a placement for when he is 16. I viewed the local viable option and though the same company's adult provision feels very right for him, the 16-19 doesn't. Without being negative, it feels too advanced for him. I like to look for positives.. but I am also realistic. I go with my gut feeling. I think he would be swallowed up in a world of confusion there...and for two years... is there a point? It felt like two steps forward but then three back when I reflected on there as a option. I was enthusiastic the day I visited, but didn't have a good think about how M would be until after.

What I want is a care package so he and I are safe to get him to adulthood. Not just safe, happy too. If this will be at home with me, or away... who knows.

I'm too tired emotionally and physically to pursue any of it until after half term. One day at a time...

#FeedingTubeAwareness

M proudly showing off his feeding button in honour of feeding tube awareness week. And those who know him well will know just how much M loves his button and its a part of him. He's forever checking it's closed. 

M had a NG (down the snout) tube as a baby until he learnt to take it out. They do wonders for hand to nose coordination! So until 2009 I persevered with oral feeding... basically slop. His reflux worsened. His swallow reflex became dangerous. In 2009 I gave in and he had a peg fitted. BEST DECISION EVER! 

Was it by some coincidence that within weeks of good nutrition he had the confidence to take his first steps at nine years old? 

Eighteen months later his peg was changed to a mini button as in the picture. He continued to have some oral safe foods but the majority of the food in his tummy feed as we call it. Other problems caused weight loss. But perseverance. And nasty tasting meds... Straight in the tubie! 

And then the tubie hit an all time new level of importance. M commenced the ketogenic diet. The main of this goes in his tubie. Without this he would still be riddled with seizures. His all round health has reached new levels. There is no way he could manage the ketogenic diet without his tubie. 

I love M's tubie, and so does he!!! 

Just doing my awareness bit. 

#feedingtubeawareness

A poignant decision made.... head rules heart.

Last night, M once again proceeded to fill in the un-bruised gaps on my arms. We had to ride it out. It took two hours for him to start to calm and another to be settled enough to have his feed and then continue his routine. During that time I was able to hide in the bathroom for a few minutes, I cried. I cried so hard I thought I would never stop. Pain searing through my arm. I had had no choice but to try and control him physically. He started to slap his own legs when I retreated away. Its one thing enduring it yourself, but to watch him self harm... beyond explanation. I could not and would not let another harm him so why would I let him harm himself. Fortunately, it is the first self harm I have seen for a long time.

I then realised enough is enough. This has to end somewhere. Walking out would be a cry for help. Help would be short term (Likely local unsuitable respite unit) Help may only exasperate the cause. I am still teetering on the edge but at the same time I am learning to deal with it all logically. I have to be logical. On spur of the moment I began looking at websites and OFSTEDs for local boarding schools who may be able to cater for M's needs. I also looked at condition specific national ones. That helped at the time. It hurt my heart like hell, but I know I have to be sensible. My head HAS to rule my heart or one of us is going to get seriously  hurt. I cannot cater for his needs on my own any more. I am lucky to have amazing friends who are gentle but honest. They are my sounding board. They are on the outside looking in, but many with similar situations and experiences. They tell me how it is. I know they are right. My head is out of the sand.

A bit of a nights sleep. A cleaning blitz today and my head is clicking over sensible thoughts. To move M to one of the provisions I was looking into last night is not right. The organisation whom I had ear marked for adult provision for him at 18 also have further education colleges. I am going to look at one of them next week. Essentially, it will be the same plans, just a little earlier. one transition. (there's a whole lot of funding headaches but one step at a time) I have decided that if I like the college I am going to see, I am going to fight for a place for him from the start of the next school year at the age of 16. A 52 week placement so he gets what he needs day after day after day, week after week. I get to be mum again. Obstacles and bridges to cross getting there and even after by way of operations but every tether reaches an end. I need it to be a smooth transition that is right for M, not a frayed mess because something bad has happened.

In the meantime I will speak to powers that be (meeting next week) to arrange a plan to get M and I to that point safely.

This post is very matter of fact. I am not going into my feelings on the decision too much right now. It's a coping mechanism. My heart will take time to catch up with it. A long long time.  I have to do what is right for M so he gets the care he needs and we both stay safe.

Soto Syndrome et al: our story.

The Child Growth Foundation are currently on social media leading a campaign to raise awareness of certain growth related conditions and Soto Syndrome comes under their remit of support. therefore this post is with that in mind to contribute our story for awareness, but also i know some of my readers don't know us personally so maybe interested in M's challenges in life and where they allegedly come from. 

Our Story

At 33 weeks I went into labour but they stopped it. Had high blood pressure and was keeping a kick chart...three weeks later I noted there was little movement. I was admitted and baby was monitored. He had low ctgs and v poor foetal movement...24 hours later I finally was examined (another story!) and was rushed upstairs to be induced. Waters popped (my eyes nearly did too when I saw the knitting needle implement they were going to pop my waters with!) However, labour didn't happen. Another examination concluded baby was in distress and I had an emergency c section. The moment that changed my life forever... M was born at 7:15pm on 20th July 2000. It’s strange the things you remember...I remember thinking it’s the break in Emmerdale. He was rushed to the resus, but only needed facial oxygen to get him going for five minutes and I heard him...not a cry, just a noise but it was all a relief. As the surgeons patched me up, I remember an intense urge and need to see him and hold him. He was placed near me so I could see him and his father got to hold him. 

We were then taken to the recovery area. I so wanted to hold him but he was taken to SCBU.. I was told it was because he was a bit cold, nothing serious. His dad went to see him and bought me back a Polaroid picture of M. (the days before instant photos on mobiles!) I went to sleep clutching that picture. During the night, I was woken by two doctors to tell me they thought M may have an infection but nothing serious so to get some sleep. Next morning I waited and waited to be taken to see my baby...I finally was taken up there at half ten. He looked huge in the incubator even though he was 5lb10 born...he was so long!! He looked grey but otherwise OK. Being young and naive I didn’t suspect his condition deteriorating. The day consisted of visitors. I remember feeling resentful at all these people seeing my baby when I couldn't cuddle him. 

That evening he really got worse...multi organ failure, had to be put on the ventilator and paralysed and morphine, platelet transfusions...too much to go into ...good job this is blogging..have tears remembering. At two in the morning it was arranged for him to be christened..I’m not religious or anything but it seemed a comfort at the time. I was asked if I wanted to hold him....to let him go in my arms...my desire to hold him went from 100% to zero and told them to fight for my little bundle. so that they did.

The next few days were critical and after five days he was taken off the ventilator and was breathing for himself...that felt like he had just been born all over again!!! A month later I took him home. He had his trials at SCBU but the important thing was I could take him home!!! 

At first I found myself in denial of what had happened. It was like he had only been born a few days before. I became very protective of him. I was told to expect some long term problems but not to the extent which I think they knew. I got it into my head that it would be just his liver as it was still degenerating. I thought he may need extra help from physio etc but it didn’t really dawn on me the shocks that were to follow. 

When he was six months old I was told he was showing early signs of cerebral palsy. By then we had portage, physio, OT, sensory impairment services etc etc coming in. My house didn’t feel like my own and to some extent my baby didn’t feel like my own. Constantly being told what to be doing with him. I just wanted them to let him be a baby.. Many a time I felt like screaming..."..my child is a baby, he is M..leave us alone."  though I knew they were doing the best they could for him. Days filled up with these "professionals" and hospital visits to Lincoln, Boston, Sheffield, Birmingham and Nottingham. Looking back, I don’t know how I kept up with it! 

The first official diagnosis we got was when he was fourteen months old. He had been for MRI at Sheffield and I knew we were going for the results from the neurologists... He said that M has dystonic tetraplegic athetiod cp with some spasticity. Say it quick and it is still as scary. I just felt numb and very alone and cheated for myself and my little boy. It took weeks to learn to accept it, grieve, accept, loads of tears, feelings of guilt for feeling as I did and an intense sadness. Even now I get that sadness for M. At first I would see other babies..feel jealous and couldn’t help comparing what they could do. M has a cousin the same age and seeing them together I still feel sad at times. there is no shame for feeling sad. It is what it is.

Since then, it has been a absolute roller-coaster. In house therapy continued, though I sometimes felt overcrowded with them, I knew they were doing the best for my little boy. I will be eternally grateful to his portage worker who really helped me to help him to turn corners and became, and still is, a great friend to M and me. It is the small milestones that matter…not only because of their value in their own right but the effort gone through by all and especially M to reach them. I remember sitting on the floor with his OT when he was a baby. She had a piece of foam and an electric carving knife trying to make a suitable hole in the foam to allow M to learn to keep his head midline as it always went to one side… thus followed by months of making the poor child lay with his head on this pillow hence he learnt to keep his head midline which is a big milestone. M was determined from day one. 

Problems arose and were dealt with as they did. At one point I was feeding him 15 times a day to have it thrown up all over the wall. Trial and error with meds meant his reflux was put into control and he then narrowly escaped a PEG and eventually had his NG tube removed as I was able to feed him his liquid supplements through a bottle. Sadly, his swallow became unsafe in time and he did have a PEG and 18 months later a mini feeding button fitted at nine years old. In hindsight, it was the best decision ever. No more sitting on him to give him nasty medicines. Good nutrition possible if he was having a bad day and couldn't eat....All children should be born with one! 

He has been given many “labels” One being Sotos syndrome which they found after genetic counselling. He has scoliosis for which he had a nine hour corrective surgery in October 2006 and is awaiting further surgery as we speak. That has been a major improvement for his mobility but unfortunately his lungs haven't recovered and he is on oxygen therapy. He is also awaiting surgery on his feet and Achilles. My head is in the sand about that right now. He has a sensory processing disorder, autism, ADHD, multi sensory impaired, severe learning disabilities. His kidneys are a cause for concern too...one just isn't working but the other one is compensating yet showing signs of deterioration He developed drug resistant intractable polymorphic epilepsy which is explained more in other posts on this blog. His lung function has not been great meaning he has oxygen therapy most of the time. He stops breathing in his sleep. Home ventilation is discussed intermittently but it is thought he won't tolerate it too well so oxygen is sustaining him thus far.. M has had many chances to "opt" out but he fights to stay here and keeps smiling, if he ends up crying it is not because of his effort to be happy.

M eventually took his first steps at nine years old. now there is no stopping him! Yes, he walks like he has consumed a bottle of alcohol or two, but he is mobile. He uses a wheelchair when out and about due to getting tired and needing to be safe. He has no sense of danger or concept of busy roads! 

He cannot talk..if there is one thing I would wish for him…it would be verbal communication…just so he can tell me if he feels ill and where, or why he is frustrated. He has however learnt his own version of makaton and is able to relay what he wants and doesn't want without words! He is also doing very well with an ipad communication app. He has a very good understanding of what others are saying within reason. It must be so frustrating not to be always able to put his own thoughts into words or similar. On a good day though, his eyes light up with the brightest hello..who needs words?

He is on the ketogenic diet to control his seizures as depicted in my previous posts. the majority of this is through his gastronomy with some oral foods. A miracle for M.

He has obsessions. Washing machines. Disco lights (his disco lights specifically) Chris Kamara, headphones. He self stims...switches are the main one. On. Off. On. Off. 
Routine is paramount, now so more than ever.

Behaviour and violent outbursts are a problem right now. I'm not even going to go into it on this post. Regular followers are seeing the situation we are in at the moment. Recent posts are there for interested parties to see. 

He attends a local school for children with physical and medical needs. He loves it! There is not a lot in life he doesn’t love…showers can be a battle though!  That may be a contradiction of recent posts describing his meltdowns. They are not because he hates someone or something...they are because his world is mismatching and his brain cannot deal with it or similar. See here for a bit of an explanation. 

What has caused all this? Soto syndrome is genetic. I believe his father also has the syndrome but he refused genetic testing. For reasons I will not go into, he is not a part of M's life and has not been since 2005. We are lucky to have a very special "forever daddy" for M in our lives now. An absolute rock. we don't live together (yet) but are engaged to be married and very excited for our future as a family. M absolutely adores his forever dad. (as do I!) Sorry, back to the causation... the cerebral palsy is thought to be due to his birth story which I cannot go into due to legalities at the moment. The other names collected along the way...who knows?!

So how, with all his diagnoses can I differentiate which bits are related to soto syndrome or to the others. Simply I cannot. Certain bits, yes. his physical features.. the big feet, larger head, worlds longest arms. Many I can't though. It doesn't stop me trying. As i learn about friends children and adults with soto syndrome, I can see differences... some subtle, some major. However, the reality is so many overlaps within these diagnoses mean hes a complex mix. Though to me, and to all who know and love him...he is just M. 

Is there anything I can offer as advise to those at the start of their journey? Probably a 1001 things and then some, but the main one is don't be too proud to ask for help, to take that help, to ask questions.  The most important advise i give people on similar journeys (who ask for it) is to make a day (or more if possible) a week that, if possible, is not appointments or meetings, no emailing to chase such or anything... just precious parent/child time. Time to be that parent and the child to be the child. Do the essential cares and therapies, but do the things that make you feel like a parent and not a carer, nurse, therapist, advocate etc etc etc.....

A ketogenic milestone!

Today is a big day. After nine years of various combinations of AEDs (anti-epileptic drugs) we have finished the wean of the last one. This is thanks to the ketogenic diet. When M commenced the ketogenic diet in September 2014, he was on a combination of four AEDs. And now none!

I will attach some links to the end of this post for those who want to find out more about the diet itself. It has without a doubt being the miracle that has saved M's life. Absolutely plagued with seizures up until the day he began the diet and reached ketosis,...with only a few break throughs since. Each with a presumed reason such as a virus or chest infection etc... or in the early days, startle reflexes. He does still have absences when tired. These are not significant and do not affect his quality of life. In the past pre diet, I have had to resuscitate twice. Once caused by post seizure vomit and once from cardiac arrest due to seizure rescue medicine. Something no parent should ever have to do. Something that will never leave me. Something that tells me how close he came to the seizure monster taking him away from us. There are some negative side effects. Some of his AEDs also have a mood calming effect. That is gone and with other contributing factors has brought massive new challenges. But this post is not to dwell on the bad bits, its to raise awareness of the ketogenic diet and its magic miracle. The miracle of life

A good opportunity to thank all who have supported us on our ketogenic journey and continue to do so. THANKYOU, especially the team at SCH, online social media groups, M's school, carers and all my friends and family.

http://www.thedaisygarland.org.uk/

http://www.matthewsfriends.org/

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet

http://www.epilepsysociety.org.uk/ketogenic-diet?gclid=CjwKEAiAiZK1BRD509nPsYiUk2YSJAAMoAwCWawpCFXhXsoLvGcJoPwiSUzDds6AOk2CoTtulrTqlRoC9OLw_wcB#.VqSj5CqLSUk

Making sense of sensory overload

Those who have been following my blog this week know it is a difficult time. As today is a calm day so far, (its the weekend and routine is easy to keep at the weekend) I thought I would try and explain what goes on in M's mind when his world is turned upside down whether by environmental influences such as a shopping trip or internal influences such as a break in routine.

Sensory overload. I didn't really grasp the concept of this until I went to an autism conference recently and the simulation below was shown. Tears rolled down my face. I was broken. How and why does my boy have to experience a similar experience. There is a saying "if you have met one autistic child, you have met one autistic child." Like everyone is different no matter what, this simulation may differ from what M experiences. Sadly, he cannot tell me in any way shape or form. Sadly, when it happens, it results in the meltdowns that have to ride until his emotion is out. Then he is fine.

I needed to see this video. I needed to try and understand. I never will completely. I am not in M's shoes. I am on the receiving end. It doesn't make the violent outburst any easier to deal with and I am on the edge of my coping capacity still, but it goes some way in understanding why...and riding it out with him.

Please watch the video. Have your computer or similar turned up and embrace it how it is meant.

A graphic reality :(

It's been a difficult few days. Meltdown central in this house. Crisis point... For me. 

As always my heart is bruised more than those you see in the pictures (though I'm sore!) 

Before and after school.. Major issues. Last night as he attacked me, and it was attack, I couldn't help but cry. Tears streamed. Pain soaring through me. Crying makes him worse. But I'm human. And I hurt. There is no magic button. No reasoning. It just has to ride. 

I'm at crisis point. Powers that be appear to be supportive though and I'm confident the right help and plan will be found to help deal with it and get through. If not, I will just stop. And that's the wrong thing. But safety of myself and himself hangs in the balance. 

More bad news from a hospital appointment today, but I just can't compute that right now. My energy is gone. 

But I do want to say a massive thank you to those who are getting me through this. You know who you are. xxx

So tonight I wanted to walk...

..but couldn't or wouldn't. I can't decide which. Recently it has crossed my mind many times. To the point of thinking the scenario in my head... I walk and ring the police from outside the house. When I hear them approach I keep walking... let him be their problem. How awful is it that I am left feeling like this and openly referring to my child, the one who has been my world since his birth as "him be their problem" ...and not feel overly guilty for feeling that. Where has my baby gone? I'm broken. How has it come to this? Is it my fault? My own mother was rubbish. I had to leave home at 15. I always thought she had taught me how not to parent but maybe I am doing something terribly wrong too. Is it the fault of my support system. yes I need more support in the house and more sleep and more respite but that's always been the case... why am I failing to cope more and more? His needs a are changing. They've always changed in some way but I have adapted. I am struggling to adapt. The bruise on my leg throbs... but my heart is ripped apart.

Last week I was judged by an ex-colleague for my choice for his future, and my own future. If she, or anyone can do any better.. please do come and try. I'm MORE than willing to swap!

Supermum? NO!

There are days when you are just emotionally exhausted! No rhyme, no reason. Just dog tired. Today was one of those days. Yesterday was a good day. I had a interview at the local college to study thus evidencing recent study needed for when I apply to nursing in a year or two. Unconditional offer of a place there and then.

Today also a good day becoming involved in something that can change the future of care and quality of life not only for M, but for many children and adults of the future across NHS England. Again, a subject for another post.

However, I was unable to participate as actively as I would usually as I, today, feel totally drained. It maybe that care enabling my respite has been sporadic lately due to carers being on annual leave. Not the carers' fault as obviously they have a life but the agency have been unwilling unable to provide cover. My craved sleep is seemingly not important. My need to do "normal" (for want of a better word) things for a few hours and to recharge my batteries physically and emotionally unfulfilled. However, I meet with the agency tomorrow to sort it all out. M needs consistency. I need consistency.  Four nights sleep a month is not alot to ask. So I need to find my strength to be assertive when I meet them tomorrow.

I have read a few things lately regarding "special needs mums" being referred to as "super-mums." I back up the general consensus that we are not. I wish we were. If we were we would be able to thrive on sleep deprivation, constant fighting for our children, constant (and sometimes tedious) physical tasks and demands, the emotional battle..the list is endless. Super-mums we are not. Tired we are... I am!

A no day. Seizures.

Today is a no day. a no day is a day that is just weird. its not a routine day such as a school day. Its a no day.

M's seizures began in 2007 at the age of 7. Suspected insignificant absences prior to that but the first tonic clonic showed its face on the 23rd August 2007. Here on in, our world became consumed by new seizure types becoming more frequent. New drugs to try. new combinations to try as his seizure disorder escalated. I don't have the time today to explain the many many types but I would recommend educating yourself here if you would like: Types of epileptic seizures

M slowly became a different child. meandering in a mix of convulsions, post ictal, trance like state due to the drugs with eventually only glimpses of the real M. Each seizure leaves a mum feeling helpless. At the time you deal with it. you have to. THeir life depends on it. After, a piece of your heart has been ripped away. And with that piece of heart you see your child fading just a little bit more. M continued to deteriorate. Drugs proved useless, even becoming immune to rescue medicine. Twice resuscitated either due to vomit during a seizure or cardiac arrest due to midazolam. He was diagnosed with drug resistant intractable epilepsy.

Then came our miracle. On the 20th September 2014 we started the ketogenic diet. Please do take the time to look around the link. No easy feat but with patience and perseverance, M tolerated it, accepted the daily bloods and seizures literally just stopped. OK granted, still the presence of the odd absence when tired. Thus we were able to wean his AED's. As i type, we are two weeks off finishing the last wean.

We had a breakthrough of a significant seizure just before Christmas. Caused by a chest infection.

Back on track.

Until this weekend. Clusters of partials. Two drops and I'm anticipating more tonic clonics.

Thrown back into the feeling of hopelessness. Watching my boy struggle. Heart broken.

I'm clinging on to the hope that it is caused by a underlying virus. All ketogenic parameters are within his normal range. Sp02 acceptable. Tachycardia as expected during intermittent seizures. I am prepared to use rescue medicine later to break the cycle if need be. (would rather not though as involves a 999 call after due to cardiac risk)  I'm awaiting return call from the ketogenic epilepsy nurse with advice first though.

So that is why, today is a no day.


Edited to add: please excused all typos and lac of sense in places. One very tired mum!

He doesn't do that when he's with me!

Eight words. Eight words that can say so much if you let them "He doesn't do that when he's with me!" If I had a pound for the amount of times I heard that I'd be a bit richer.

These words can come from any source... other care givers... school, carers, hospice...anyone really. Most of the time they are a statement, a passing on of information. But sometimes I read too much into them. Is it just me? Am I not believed? Am I being the neurotic mum? Do I provoke it?

Of course it depends what the thing he doesn't do with others is. It can be the overnight clean up "reasons", the meltdowns, the food issues, the pulling of hair, the slapping for attention, the throwing things around the room... the list is potentially endless.

I have spoke before about the pressure cooker effect..the fizzz pop that he feels safe to let go after a build up...when safe with me. When he knows I will won't run. Maybe that is one reason. Maybe sometimes I do provoke it a little by assuming I know what he wants. It is all too easy to just go with the expected routine as he usually thrives on that. Sometimes, however, I need to remind myself to step back and allow him to communicate what he wants, even if it is the same tedious activity I would have predicted. Allowing him to communicate is choice and independence and all those textbooky words that really do make a difference.

I should be pleased he "doesn't do that for them", and I am. Last thing I want is his carers to leave the job, or for school to become a challenge as examples.

I like to think there are things "he doesn't do for them" that he does for me... like placing his fist on his chest after mine signifying "I love you" That's our mum/son thing and makes the darkest day the brightest.

All I ask is any readers who find themselves saying those words to whomever... be cautious. not eggshells as honesty is important, but tone can make a whole difference to the context of those words.



*Just to add, this is not aimed at anyone in particular so don't everyone go getting all paranoid. Its a general observation and me putting down my thoughts

Honest and open...

I have had some lovely comments regarding this blog so far. Thankyou. I'm human. That boosts my ego though each post is wrote to help me, and maybe help others.  Comments include how open it is. It has to be. It's life. It is maybe also that I'm very much writing it from how things make me feel. It would be easy to fill it with opportunistic positives about M with photos captured at the right time. That has more of a place on social media. I do hope to share more positive posts, but as I said, the good, the bad and the raw ugly is what this is about.

It would be hard to share how things make M feel. Simply because I do not know. (I wish I did!) M's world is different to mine. And I'm forever conscious that "our" world is trying to mould him into it and make him fit in. That's not how it should be. That's not how it is meant to be. M needs to experience THE world how his mind meant him to and I wish THE world (me included) would take the time and patience to remember this more. There does need to be some middle ground and that is where the frustrations can begin on both parts, but simply one day, one hour or even one minute at a time, as always has been.

It's never easier than it is right now?

Now that's a positive title... it's meant to be but its meaning is though the current set of problems seem dire, if they're then solved, there's a new set of problems around the corner. That's how I feel right now.

Its not until you try and solve a problem, unpick it with detail, that you realise how complex it is (or can be)

Last night, as normal, I went into my sleeping sons room to adjust his oxygen, check him, tuck him in..usual routine. Part of that almost usual routine was to find he needed cleaning up. To protect his dignity, I won't go into detail but his innocent wandering hands had caused a situation where I needed to wake him to clean him, change his bed, clean his comfort toy, clean his portable DVD player etc etc. All completed with calm on both parts (not always the case) and he happily snuggled back down allowing The Simpsons to play on his player and soothe him back to sleep. (Wouldn't be my choice, but hey it works for M!)

As always I reflect. Usually able to readjust my mind and try to salvage an hour or two  "me time" before retiring for some sleep. Last night I became overwhelmed with utter fed up-ness (that's not a word, I know) I needed a solution for this. Its gross. Not nice for M. Not nice for me. I turned to my social media. I am so very very lucky to have a massive network of online friends who understand Who get it. Who don't judge. Who (many of) live similar lives and face similar problems. Most I have met in real life, some I have not. All equal in my mind and valued beyond a few words i can express on here.

In response to my post "Fed up of shit. Literally. How can I stop wandering hands. He can't cope with onsies or popper vests. It's gross and I'm sick of it"  they came up with many ideas either through experience or thoughts. This is where the unpicking of the problem began. I won't go through each one but an generic example is the use of different clothes such as a tight all in one. Here revealed the complexities of M. Whichever diagnoses causes his sensitivity, whether its SPD, Autism or soto or a mix of the lot.. it has a lot to answer for. He very much associates different clothes with different situations. (e.g. a red t shirt for school with buttons that do up to the top.. will rarely tolerate a jumper on top despite it also being red and regardless of the weather) Even the wrong socks will instigate a full on tantrum induced meltdown. On reflection I think the only part solution will be to try and change the bowel habits by medical intervention. Not nice, but maybe necessary. Not easy due to his diet and prophylactic antibiotics having a part to play but maybe easier than trying to change M's world that makes him secure. I have tried many things, and will try many more. I reiterate my gratitude to my friends... not only with suggestions, empathy and sympathy but for saving my sanity last night. 

And thus I return to the title.. this mornings tantrum, and it was a tantrum, saved by the bus escort turning up, was because he couldn't take his suitcase to school. Last term he started staying at school for two nights a week. He loved it. It became routine. However, its on a rota system so this term he isn't. Routine broke. M's brain broke. However that is a post for another day. I will now go and clean up the aftermath of that chaos and then hide in a corner with a cup of tea for ten minutes.