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.
Thursday, 28 January 2016
Wednesday, 27 January 2016
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.....
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.....
Sunday, 24 January 2016
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.
Saturday, 23 January 2016
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
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.
Thursday, 21 January 2016
A graphic reality :(
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
Monday, 18 January 2016
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!
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!
Thursday, 14 January 2016
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 beenunwilling 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!
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
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!
Monday, 11 January 2016
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!
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!
Friday, 8 January 2016
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 Iwill 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
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
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 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.
Thursday, 7 January 2016
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.
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.
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