After a week of continuous illness - Matthew followed by Abigail, lack of sleep and other stresses, I had that multi-disciplinary meeting that I was so dreading.
I woke yesterday morning with such a feeling of dread, determined somehow to do the best for Abigail. Having received a letter from our paediatrician during the last couple of weeks, I felt the focus of our meeting would not be on the very real challenges that Abi faces, but about our family history and how that was most likely the cause for her behavioural difficulties. I have also always had the impression that there are no issues in school.
All professionals involved with Abi, excepting one who sent a letter with recommendations, attended the meeting. I had my parent partnership worker and our Nanny/Behaviour Therapist with me for support. There had been no seating plan, but interestingly all the professionals sat on one side of the table, until our OT arrived. It felt very much like looking into the eyes of the firing squad. From my perspective I felt I was there to prove myself and to prove to them that there are genuine difficulties, lets face it, not too many families find themselves in my situation with not one child with "needs" but all three. Thinking about this objectively, it really could be perceived that I have nothing better to do than dream up problems.
But back to the task in hand, school went first and as I suspected, it was stated that Abi was an exemplary student, she achieves well and she wants to achieve, lovely girl, no problems and then it came, that lightning bolt I simply was not expecting, for me it completely changed the direction of the meeting. Suddenly I am hearing that my daughter can not work in groups, she works best in a pair but she has to be in control, she has only a couple of strong friendship bonds but with issues,she does not have the confidence to approach all adults and she is so expressionless they can't even tell when she's happy! I felt the whole tone of the meeting change, no-one was expecting that, having been repeatedly told that there are no problems in school.
Abis Paediatrician gave me the chance to offer my opinion next, but I asked the OT to share her assessment. In my head, it made sense for the professionals to go first and then I'd say my piece after. I noticed that even though she had written a report, it was very different people having to listen to her account of Abis challenges first hand rather than reading it on a piece of paper. This meeting really wasn't going the way I had imagined, as it was explained exactly why Abi behaved the way she did. Not only that, it was made clear that whilst Abi has significant sensory processing disorders this did not account for all of her difficulties. The OT said, there is another child in the house with Sensory Disorders who has responded very well to intervention but we are not moving forward with Abigail as we should be.
Then it was the moment I dreaded, my turn. I felt so choked up and really didn't know how to start, but somehow I did without crying or showing any anger, and oh boy I was angry, at least five years worth of angry! I sat and described the difficulties my lovely daughter has that I can not explain. Immediately I was challenged from the one direction I knew it would come, not only was I expecting it, I was ready for it. In that moment I felt nothing but cold anger and determination. I would not sit and have the blame put squarely on my shoulders for some perceived parenting crime. I laugh in retrospect, as at one point boarding school was suggested, as it would be interesting to see how she behaved if she could not come home and "let go"! I found it hard being asked to justify my statements time after time, but I was prepared. I described Abi as a fantastic artist, she loves drawing but she only draws about her current obsession, I had organised myself enough to bring with me a whole host of drawings, changing as her latest interest changed. I was asked for them, but only one person used a negative tone.
As we started to plan how to move forward, a very bold statement was made by a member of the group. "You are talking about an autistic child, that is what you are describing". It got a little bit heated at that point. It would be fair to say that Aspergers has been mentioned on more than one occasion, BUT thats not where we are, there is no diagnosis. Whether thats the road we end up on remains to be seen. What I needed/need is a plan, where do we go from here, what happens and how on earth do I help her? Sadly, social services need to be informed again, for my protection, to ensure nothing is twisted around on me.
We now have plans, there are assessments and meetings planned with no firm thought for a diagnosis which might not be forthcoming, but there is definite movement. Sadly, my position hasn't changed, there isn't any extra support available right now and no magic answer but there is progress and for that I am grateful.
The one thing that I really took to heart as I left that meeting was this comment "It needs to be recognised how much work Vicky has put in". The same person then said, "I don't know how I would cope in your position" (or similar words, its late, I'm tired). Its the first time I've received that kind of public acknowledgement of just how damn hard things are for me personally and it meant alot.
I don't often feel sorry for myself, I'm not that type of person, but recently I have felt defeated. So many difficult things have happened in the last few weeks, but with that one comment my feeling of defeat lifted. It has been made so clear just how bad things are and that there is the potential for a catastrophic event unless there is some input, and quickly. It's been acknowledged and recorded, it just remains to be seen what is actually done.
Friday, 4 May 2012
Friday, 27 April 2012
Side effects and SIDE EFFECTS
When you have a child with Leukaemia, once you've got past the initial shock and terror, you come to expect the ups and downs that it brings. You're prepared for them to become ill and you're made aware of the potentially damaging side effects of the treatment.
What you don't expect is to give your child a widely used medication for acid reflux which leaves him barely conscious. Which is what happened in our house yesterday when I gave Matthew a new medicine.
I am very grateful to my neighbour who whisked Abi and Thomas to school as Matthew deteriorated so quickly they would have been badly frightened. My best friend appeared as if by magic, whilst I was calling for an ambulance. I'm normally extremely calm in a crisis but I could hardly get my words out to the operator, it was terrifying and she stayed with Matthew trying to keep him awake until the main ambulance crew arrived.
I later realised that the first responder, whose purpose is to get to the scene first, turned up last. At least twenty minutes after the ambulance car and a good ten after the ambulance. the only slightly amusing thing in the whole day.
The drug I gave him, having suggested it to our Clic nurse, is one I use myself and his sister was on for years. Fast acting and easy to take. Within an hour he said he felt unwell, within two hours he was only responding to pain stimulus. When he could be roused he was agitated and confused. Initially, the Drs discounted a drug reaction and after a few hours moved their focus to more scary things. Stroke, Meningitis and encephalitis, my fear was the Leukaemia back, or worse was there something growing that shouldn't be. There was talk of transferring him up to our childrens hospital in Bristol, but after liasing with them they firmed a plan. At this point they decided to put him through the MRI scanner. A massive machine, that is so incredibly loud I had to wear ear defenders to stay with him. The vibration made me feel physically ill. However, Matthew didn't even stir and others assumed he'd been sedated.
Waiting for the results was awful, but thankfully didn't take too long. They were clear of nasties which left a decision to be made about giving him a lumber puncture then or wait until the next day. His Dr is very measured in her actions and chose to wait, for that I am grateful, as she knew he'd fight them in agitation.
Friday arrived and with it a small boy who had no recollection of anything after getting into the ambulance until he finally woke for a couple of hours at 7pm. Waking hungry to find he was Nil by mouth wasn't the best news for him but I was more worried about him having a general anaesthetic and what they might find in his spinal fluid. But he woke after the anaesthetic like they said he would, and the best news was that it was clear of infection and Leukaemia.
Saturday morning came and he's back to his old self, his Dr is now absolutely convinced he's had a very very rare reaction to the drug. That's two serious drug reactions in five months and two too many. I'm very glad he can't remember anything, particularly how he scared the pants off us all!!
What you don't expect is to give your child a widely used medication for acid reflux which leaves him barely conscious. Which is what happened in our house yesterday when I gave Matthew a new medicine.
I am very grateful to my neighbour who whisked Abi and Thomas to school as Matthew deteriorated so quickly they would have been badly frightened. My best friend appeared as if by magic, whilst I was calling for an ambulance. I'm normally extremely calm in a crisis but I could hardly get my words out to the operator, it was terrifying and she stayed with Matthew trying to keep him awake until the main ambulance crew arrived.
I later realised that the first responder, whose purpose is to get to the scene first, turned up last. At least twenty minutes after the ambulance car and a good ten after the ambulance. the only slightly amusing thing in the whole day.
The drug I gave him, having suggested it to our Clic nurse, is one I use myself and his sister was on for years. Fast acting and easy to take. Within an hour he said he felt unwell, within two hours he was only responding to pain stimulus. When he could be roused he was agitated and confused. Initially, the Drs discounted a drug reaction and after a few hours moved their focus to more scary things. Stroke, Meningitis and encephalitis, my fear was the Leukaemia back, or worse was there something growing that shouldn't be. There was talk of transferring him up to our childrens hospital in Bristol, but after liasing with them they firmed a plan. At this point they decided to put him through the MRI scanner. A massive machine, that is so incredibly loud I had to wear ear defenders to stay with him. The vibration made me feel physically ill. However, Matthew didn't even stir and others assumed he'd been sedated.
Waiting for the results was awful, but thankfully didn't take too long. They were clear of nasties which left a decision to be made about giving him a lumber puncture then or wait until the next day. His Dr is very measured in her actions and chose to wait, for that I am grateful, as she knew he'd fight them in agitation.
Friday arrived and with it a small boy who had no recollection of anything after getting into the ambulance until he finally woke for a couple of hours at 7pm. Waking hungry to find he was Nil by mouth wasn't the best news for him but I was more worried about him having a general anaesthetic and what they might find in his spinal fluid. But he woke after the anaesthetic like they said he would, and the best news was that it was clear of infection and Leukaemia.
Saturday morning came and he's back to his old self, his Dr is now absolutely convinced he's had a very very rare reaction to the drug. That's two serious drug reactions in five months and two too many. I'm very glad he can't remember anything, particularly how he scared the pants off us all!!
Monday, 23 April 2012
365 days
Exactly two years and two months ago today I took Matthew to Musgrove Park Hospital in Taunton, he'd had a very high fever for a couple of days, but apart from looking a bit pale I wasn't concerned. We were expecting to have a blood test and then come home. As it happened, I had asked my Mum and Dad to come and look after Abi and Thomas as I didn't want to cart them to the hospital for what could be a few hours of waiting around. Having been completely unprepared, I missed the concerned looks being exchanged between Drs, its very clear in retrospect now. We'd only been on the ward a few minutes and after Matthews first examination by a junior Doctor, he came back with a senior Doctor. They did not say a word to me to frighten me, other than they could not rule out a form of meningitis, but were very reassuring. I popped home to get some clothes and the rest, as they say, is history.
Two years and two months later, I consider some of the ward staff my friends and I am on first name terms with the consultants. I spend a lot of time carting Abi and Thomas to the hospital for hours of waiting around and know the hospital as well as my own home.
He has been through so much in the last two years, more than many adults endure in a lifetime. Recently, many people have made the comment only another year, the ends in sight, it will be easy now. For Matthew, and for me, its actually quite the opposite. The Leukaemia road is a long one, and we are two thirds through it, but this little boy has lost two years of normality, being able to join in all of the games his friends can, not being able to play on the apparatus at school, missing out on some favourite foods and more recently it appears he is becoming insulin resistent when on steroids, which means excluding treats for the 6 days each month he feels like hell. Each month of treatment is seeming to take more out of him, more pain, more nausea. For him, knowing there is another 12 months ahead is like a life sentance.
For me, its a worry, not that I'd ever tell him that. I worry that he is not tolerating treatment so well. Each month he seems to struggle more, physically and emotionally. He has not been properly well since December 2011 before he had shingles, renal failure was a side effect of that treatment, yet another kicking his body took. His bone marrow is getting tired, and I've been told it is more likely that they become ill in the third year. The Dr's have all seen this before, to them its routine. To us its not and somehow he needs to have the strength to get through the next year and come out as unscathed as possible at the other end.
365 days could be a very long time but with our little milestones on the way we will get there.
Two years and two months later, I consider some of the ward staff my friends and I am on first name terms with the consultants. I spend a lot of time carting Abi and Thomas to the hospital for hours of waiting around and know the hospital as well as my own home.
 |
| One week after diagnosis |
 |
| Five weeks later |
 |
| 6 months later 2010 |
 | ||||
| October 2011 |
He has been through so much in the last two years, more than many adults endure in a lifetime. Recently, many people have made the comment only another year, the ends in sight, it will be easy now. For Matthew, and for me, its actually quite the opposite. The Leukaemia road is a long one, and we are two thirds through it, but this little boy has lost two years of normality, being able to join in all of the games his friends can, not being able to play on the apparatus at school, missing out on some favourite foods and more recently it appears he is becoming insulin resistent when on steroids, which means excluding treats for the 6 days each month he feels like hell. Each month of treatment is seeming to take more out of him, more pain, more nausea. For him, knowing there is another 12 months ahead is like a life sentance.
For me, its a worry, not that I'd ever tell him that. I worry that he is not tolerating treatment so well. Each month he seems to struggle more, physically and emotionally. He has not been properly well since December 2011 before he had shingles, renal failure was a side effect of that treatment, yet another kicking his body took. His bone marrow is getting tired, and I've been told it is more likely that they become ill in the third year. The Dr's have all seen this before, to them its routine. To us its not and somehow he needs to have the strength to get through the next year and come out as unscathed as possible at the other end.
365 days could be a very long time but with our little milestones on the way we will get there.
Monday, 9 April 2012
Roller coaster riding really isn't for me!
Have you ever been on a ride that you hated and screamed "Stop, I want to get off?" Lifes been a little like that over the past few weeks.
I always find it funny, in an obscure way, that when you go to see a health professional, and I have seen far too many over the last few months (to the point that random Dr's wave hello at our local hospital), they want to hear something positive. But is it for them, so they don't go home each day feeling truly depressed? Or to simply encourage us to try and see the positive in what sometimes seems an overwhelming number of negatives? But just how do we keep clinging to those positives, especially at times when they are far outweighed by so so many negatives?
The truth for me is, that if I don't it would be so easy to simply give up. Give up trying to fight what seems like a continually losing battle to get some support for Abigail, and ultimately for us all. I cling to the fact that underneath the anger, animosity and aggression I know that there is a lovely, loving little girl who is incredibly gifted trying to work out this confusing world. I need to keep fighting for her to give her the opportunity to be the best that she can be, but I have to do this whilst still learning to accept that she is different, she will always react to situations in a different way, she will always behave in a different way. At the moment I don't understand why and I feel that I am letting her down because I can't support her properly.
Of course the effects of Abi's behaviour don't just affect me, they are far reaching. Abi and Thomas both have sensory disorders, just one problem, they are not the same, they are polar opposites. That makes life challenging enough, but then throw an immune suppressed and physically fragile child into the mix and it becomes a whole different ball game. Someone said to me a couple of weeks ago that Abi was actually more concerning than Matthews current fragile emotional and physical state, I found this a little insensitive given the circumstances, but I also know its the truth.
So what am I going to do?
Truth is at the moment so many things are running through my head, some constructive, some not, such is my frustration. All the right professionals are involved, so thats positive, but unfortunately we're not all singing from the same hymn sheet. I don't want my daughter to have a "label" but I fear without one she will not get the help and support that she desperately needs in order to function properly. I fear for her future and what it may hold.
Therein lies my answer. I have a "multi-agency" meeting coming up in a couple of weeks to discuss "the best way forward". I am annoyed at how it has come about, and I am annoyed about how it has been arranged without any deference or respect to me as her Mum, but the fact remains this will be the best way forward. I need to take these couple of weeks to turn my anger and frustration into determination to succeed for her. Glimpses of the beautiful child within are simply not enough.
I always find it funny, in an obscure way, that when you go to see a health professional, and I have seen far too many over the last few months (to the point that random Dr's wave hello at our local hospital), they want to hear something positive. But is it for them, so they don't go home each day feeling truly depressed? Or to simply encourage us to try and see the positive in what sometimes seems an overwhelming number of negatives? But just how do we keep clinging to those positives, especially at times when they are far outweighed by so so many negatives?
The truth for me is, that if I don't it would be so easy to simply give up. Give up trying to fight what seems like a continually losing battle to get some support for Abigail, and ultimately for us all. I cling to the fact that underneath the anger, animosity and aggression I know that there is a lovely, loving little girl who is incredibly gifted trying to work out this confusing world. I need to keep fighting for her to give her the opportunity to be the best that she can be, but I have to do this whilst still learning to accept that she is different, she will always react to situations in a different way, she will always behave in a different way. At the moment I don't understand why and I feel that I am letting her down because I can't support her properly.
Of course the effects of Abi's behaviour don't just affect me, they are far reaching. Abi and Thomas both have sensory disorders, just one problem, they are not the same, they are polar opposites. That makes life challenging enough, but then throw an immune suppressed and physically fragile child into the mix and it becomes a whole different ball game. Someone said to me a couple of weeks ago that Abi was actually more concerning than Matthews current fragile emotional and physical state, I found this a little insensitive given the circumstances, but I also know its the truth.
So what am I going to do?
Truth is at the moment so many things are running through my head, some constructive, some not, such is my frustration. All the right professionals are involved, so thats positive, but unfortunately we're not all singing from the same hymn sheet. I don't want my daughter to have a "label" but I fear without one she will not get the help and support that she desperately needs in order to function properly. I fear for her future and what it may hold.
Therein lies my answer. I have a "multi-agency" meeting coming up in a couple of weeks to discuss "the best way forward". I am annoyed at how it has come about, and I am annoyed about how it has been arranged without any deference or respect to me as her Mum, but the fact remains this will be the best way forward. I need to take these couple of weeks to turn my anger and frustration into determination to succeed for her. Glimpses of the beautiful child within are simply not enough.
Sunday, 18 March 2012
A little bit of history
In the spring of 2009 we made a momentous decision that would change the direction of our lives. Having had many heartbreaking conversations with my two older children we took the decision to go and set up home on our own, just the four of us, leaving their father on his own. I say we, because we talked about it together and they understood my decision, we all talked about what we liked and what we didn't like. The didn't likes outweighed the likes so much that there really was no option.
The whole moving experience was emotional and traumatic for everyone but after a couple of weeks we were used to our new home. The only difficulty was the children had hoped to see their father regularly as he was only a few roads away. He didn't feel the same and now after many difficult "access" visits he has not seen or spoken to them for 21 months.
My three children, Abigail, Matthew and Thomas have always been a bit of a challenge, I say that smiling, tongue in cheek, as that word understates the difficulties and challenges that we are faced with on a daily basis.
Abigail is 10, being 6 weeks premature and suffering with severe gastric reflux, didn't get off to the best start. She is amazingly bright, very chatty with those she is comfortable with, but has major behavioural difficulties which we are still trying to understand along with some pronounced sensory processing difficulties and anxiety issues. As a result Abi finds life in general difficult, however, pop her up on the back of a horse or give her a flute to play and she is in her element. Abi is my go to girl if I want to do a project, she finds me all sorts of facts and memorises them. In fact, she has the most phenomenal memory!
Matthew is 8. Two years ago I was given heartbreaking news that he had Acute Lymphoblastic Leukaemia, but we are two years into the three years and two months of treatment. The journey has at times been so difficult. He has and continues to cope with more things than many adults ever have to deal with. His life for the last two years has been a complete roller coaster. He has had many dark days where he has questioned life and the universe and still continues to do so. But with help and support, particularly from his best friend, most of the time you would never know what he is going through, and thats how he likes it. Giggling manically, being incredibly mischievous and making everyone laugh because his giggling is so infectious, the ultimate trick player.
Thomas is 6. He had a stroke before he was born and as a result suffers a degree of physical and sensory impairment and he gets incredibly tired. He gets frustrated at times but he never lets it hold him back. He is brutally honest with everyone, offers advice (even when its not wanted) and has a wicked sense of humour. He is my practical solutions, go to boy, invariably coming up with a simple solution, when I'm looking for the more complex.
Its hard work bringing three very special children up on your own, juggling work, illnesses, challenges, isn't that life though? But we do it and its so much easier if you just take a moment each day to stop and smile.
The whole moving experience was emotional and traumatic for everyone but after a couple of weeks we were used to our new home. The only difficulty was the children had hoped to see their father regularly as he was only a few roads away. He didn't feel the same and now after many difficult "access" visits he has not seen or spoken to them for 21 months.
My three children, Abigail, Matthew and Thomas have always been a bit of a challenge, I say that smiling, tongue in cheek, as that word understates the difficulties and challenges that we are faced with on a daily basis.
Abigail is 10, being 6 weeks premature and suffering with severe gastric reflux, didn't get off to the best start. She is amazingly bright, very chatty with those she is comfortable with, but has major behavioural difficulties which we are still trying to understand along with some pronounced sensory processing difficulties and anxiety issues. As a result Abi finds life in general difficult, however, pop her up on the back of a horse or give her a flute to play and she is in her element. Abi is my go to girl if I want to do a project, she finds me all sorts of facts and memorises them. In fact, she has the most phenomenal memory!
Matthew is 8. Two years ago I was given heartbreaking news that he had Acute Lymphoblastic Leukaemia, but we are two years into the three years and two months of treatment. The journey has at times been so difficult. He has and continues to cope with more things than many adults ever have to deal with. His life for the last two years has been a complete roller coaster. He has had many dark days where he has questioned life and the universe and still continues to do so. But with help and support, particularly from his best friend, most of the time you would never know what he is going through, and thats how he likes it. Giggling manically, being incredibly mischievous and making everyone laugh because his giggling is so infectious, the ultimate trick player.
Thomas is 6. He had a stroke before he was born and as a result suffers a degree of physical and sensory impairment and he gets incredibly tired. He gets frustrated at times but he never lets it hold him back. He is brutally honest with everyone, offers advice (even when its not wanted) and has a wicked sense of humour. He is my practical solutions, go to boy, invariably coming up with a simple solution, when I'm looking for the more complex.
Its hard work bringing three very special children up on your own, juggling work, illnesses, challenges, isn't that life though? But we do it and its so much easier if you just take a moment each day to stop and smile.
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