Received the dreaded phone call last week, from the Saint who stated that I need to go and meet with her this week to discuss increasing the boy's attendance. Oh how my lovely little bubble of feeling all was well was popped. Of course he needs to increase it, he can not get very far in life on two mornings a week, but I wonder what their goals are?
I am sure that I will be told that there are other children that qualify for his space within the unit and that could attend full time. I am also sure that I will be told that he is a very clever lad who needs the lessons so that he can achieve their recommended number of GCSES. Maybe I could play some type of Bingo in the meeting whereby I tick off the above sentences when they are spoken to me.
Time marches on far too quickly for the boy. In two years time we will be looking at colleges for him to attend once he has finished his GCSEs. He is adamant that he does not want to spend any longer in education than necessary, unfortunately for him and us it looks as if the battles of trying to get him motivated and engaged aren't over yet. Year 7 was so awful in terms of him becoming unwell that I feel we lost a year. It then took another year to help him recover sufficiently to get him into the unit but his health has then fluctuated due to the stress of starting somewhere new, coping with the noises and other students in his class. His sleep is all over the place, because we changed the medication to bedtime so that his nerves were better under control when he woke up. He has only just started again to suggest activities that he wants to do when he is not at school, so he is no longer totally wiped out by attending those two mornings. It is a bit of a roller coaster where his energy is concerned. I feel as if I am playing catch up all of the time.
The boy has hated school all his life and as a consequence the misery of getting him in has not made our life a bed of roses either. The thought of having to go through the battles again to get him in just fill me with dread. Life was so easy when I home educated him and yes I can hear you ask why don't I do it again? Can I tell you that I have already noted the picture of the "alternative " provision leader at the school which he attends? She looks really nice. I do not feel so scared if we have to go down that route. I have heard that resources such as "blended learning" exist whereby work and materials are sent from the school. This is my Plan B, locked in a dark chest somewhere in the back of my mind just waiting for me should I need it. I have negotiated my way through harsh educational bureaucracy up until now and I am no longer afraid of being creative in order to ensure that he is educated but most importantly kept well emotionally.
Plan A, well currently the boy will also meet with the Saint and say what he feels he can do and then build from there. He had already muttered to me about increasing his hours before the phone call as he likes it there and feels comfortable. There is a small chance that this could work. I have found that if I keep quiet and not talk too much about school and my own expectations of him, he will initiate meeting his goals himself. There needs to be no talk of rewards, no lectures about the rest of his life, just an acknowledging nod and a smile so that his tiny tiny spark is not extinguished by over enthusiasm. I just hope like mad that this is enough. My patience is certainly being tested!
Now for a corny moment, hope you guys don't mind, it is something that I have been longing to do for ages on this blog so here goes:
My sister and I during a rather dark 2013 started to send each other songs of the week to help us make sense of the craziness that was at times suffocating us. The songs could motivate us, put our feelings into words or cope with strong emotions.
Hence my song this week is "Dancing in the Dark" by Bruce Springsteen. My gym instructor has been having the class dance to this for the last three weeks and it is a song very close to my heart. Not so much in a starting a relationship perspective but it just takes a small action to start a change. I do not know where my actions will lead, but I am willing to try rather than wait for it to happen to me. So far this has proved rather exciting and not at all the disaster that I had anticipated!
Enjoy, Clairexxxx
Monday 23 March 2015
Monday 16 March 2015
Once you have met one dyspraxic, you have met one dyspraxic
Well hello again! It's been a long time since I last blogged, however I have been involved in a few activities increasing awareness of dyspraxia which have taken up a lot of energy so as ever the subject is never far from my mind.
Where to begin, well last week I presented a quick presentation to my colleagues about Dyspraxia and how we as Health Visitors can identify it earlier and start supporting families affected by it. There was so much to say and I didn't want to deliver it from a professional viewpoint because I felt that would make it something that existed in a world where we looked in from time to time. There are also a lot of changes locally within our NHS trust that aim to improve services for the clients and thus I felt that last week was an ideal time to tell managers how it is for families affected by Dyspraxia and how these changes could improve day to day life for them.
The day before the presentation, our local radio station was presenting a piece about "clumsiness" and the Dyspraxia foundation contacted me to speak about it on the show. Unfortunately ( well actually thankfully) I was not at home when they phoned, so the Vice Chair stepped in. The link for the show is here
http://www.bbc.co.uk/programmes/p02jm6p1 The piece starts after Cold Play's song at about 31 minutes.
In the show the Vice Chair, Gill Dixon speaks about the variety of symptoms that Dyspraxia covers and the huge difference as to how people present. She stated that once you have met one dyspraxic, you have met one dyspraxic and this sentence really resonated me with over the last few weeks.
When I tried to organise my presentation, I was amazed at the amount of discussion that exists regarding just the diagnosis. The medical profession tend to refer to it as DCD (Developmental Co ordination Delay) but there are suggestions that this tends to focus too much on the delay in movement skills rather than the emotional and planning aspects too. I also read somewhere that the diagnosis of Dyspraxia is not given by some professionals because a condition that covers just so many symptoms is not possible. I have observed on a Facebook page that I am part of that some paediatricians are now just diagnosing joint hypermobility syndrome instead because they can only give one diagnosis, most bizarre and something I will query because I would hate to confuse people anymore than necessary.
Later on in the week, my son was queried by the Saint and the rest of his teachers because they thought he was dyslexic rather than dyspraxic. His spelling was showing some worrying patterns despite his amazing ability to read. The Saint asked if he could tie his shoe laces and school tie, to which I replied that he could, he could also ride a bike and swim too. As I left, I panicked that maybe he was not dyspraxic after all, which then made me query the whole validity of getting him diagnosed, I had been treating him wrong all these years, never mind the blogging and all the other involvement that I have had with Dyspraxia!
At the weekend, we went shopping, the boy as ever clambered onto the escalator after waiting for the right moment and clung on to the rail for dear life with both hands as we descended. Yup, I thought to myself you are dyspraxic, no doubt about that.
Our local support group also met recently for the first time. Not many were able to make it but those that did, I feel benefitted as did I to be able to share stories and experiences. The children and adults had had a range of symptoms which again aligned with what Gill had stated. There were also sadly tales of the difficulties experienced in getting the vital help and support from health services and education. It still is a very poorly understood condition, unlike dyslexia and this appears to be nationwide. I worry about parents that do not have the confidence to challenge professionals or access services independently and I am in a privellidged position as a Health Visitor that I can speak up for those that I meet. I have also come to realise that it is not just about getting the diagnosis, its more important that there are strategies to enable the child and family to be able to function and feel that others are understanding around them so they do not feel isolated and worthless. I remember only too well, when we were told about the boy, that I still did not know how to get him into school and manage his meltdowns. I just wanted that information, nothing else.
As I have stated in previous posts it is the support groups, Facebook groups that often reassure and give you the strength and insight as to how to carry on when you are coping with a meltdown due to a spontaneous change in routine or you just need advice as to where to buy special cutlery from. I really hope that alongside other bloggers and the Dyspraxia Foundation it won't be long before families and people with the condition feel that they are supported and life isn't such a big struggle at times. I am sure that we will get there someday.
Where to begin, well last week I presented a quick presentation to my colleagues about Dyspraxia and how we as Health Visitors can identify it earlier and start supporting families affected by it. There was so much to say and I didn't want to deliver it from a professional viewpoint because I felt that would make it something that existed in a world where we looked in from time to time. There are also a lot of changes locally within our NHS trust that aim to improve services for the clients and thus I felt that last week was an ideal time to tell managers how it is for families affected by Dyspraxia and how these changes could improve day to day life for them.
The day before the presentation, our local radio station was presenting a piece about "clumsiness" and the Dyspraxia foundation contacted me to speak about it on the show. Unfortunately ( well actually thankfully) I was not at home when they phoned, so the Vice Chair stepped in. The link for the show is here
http://www.bbc.co.uk/programmes/p02jm6p1 The piece starts after Cold Play's song at about 31 minutes.
In the show the Vice Chair, Gill Dixon speaks about the variety of symptoms that Dyspraxia covers and the huge difference as to how people present. She stated that once you have met one dyspraxic, you have met one dyspraxic and this sentence really resonated me with over the last few weeks.
When I tried to organise my presentation, I was amazed at the amount of discussion that exists regarding just the diagnosis. The medical profession tend to refer to it as DCD (Developmental Co ordination Delay) but there are suggestions that this tends to focus too much on the delay in movement skills rather than the emotional and planning aspects too. I also read somewhere that the diagnosis of Dyspraxia is not given by some professionals because a condition that covers just so many symptoms is not possible. I have observed on a Facebook page that I am part of that some paediatricians are now just diagnosing joint hypermobility syndrome instead because they can only give one diagnosis, most bizarre and something I will query because I would hate to confuse people anymore than necessary.
Later on in the week, my son was queried by the Saint and the rest of his teachers because they thought he was dyslexic rather than dyspraxic. His spelling was showing some worrying patterns despite his amazing ability to read. The Saint asked if he could tie his shoe laces and school tie, to which I replied that he could, he could also ride a bike and swim too. As I left, I panicked that maybe he was not dyspraxic after all, which then made me query the whole validity of getting him diagnosed, I had been treating him wrong all these years, never mind the blogging and all the other involvement that I have had with Dyspraxia!
At the weekend, we went shopping, the boy as ever clambered onto the escalator after waiting for the right moment and clung on to the rail for dear life with both hands as we descended. Yup, I thought to myself you are dyspraxic, no doubt about that.
Our local support group also met recently for the first time. Not many were able to make it but those that did, I feel benefitted as did I to be able to share stories and experiences. The children and adults had had a range of symptoms which again aligned with what Gill had stated. There were also sadly tales of the difficulties experienced in getting the vital help and support from health services and education. It still is a very poorly understood condition, unlike dyslexia and this appears to be nationwide. I worry about parents that do not have the confidence to challenge professionals or access services independently and I am in a privellidged position as a Health Visitor that I can speak up for those that I meet. I have also come to realise that it is not just about getting the diagnosis, its more important that there are strategies to enable the child and family to be able to function and feel that others are understanding around them so they do not feel isolated and worthless. I remember only too well, when we were told about the boy, that I still did not know how to get him into school and manage his meltdowns. I just wanted that information, nothing else.
As I have stated in previous posts it is the support groups, Facebook groups that often reassure and give you the strength and insight as to how to carry on when you are coping with a meltdown due to a spontaneous change in routine or you just need advice as to where to buy special cutlery from. I really hope that alongside other bloggers and the Dyspraxia Foundation it won't be long before families and people with the condition feel that they are supported and life isn't such a big struggle at times. I am sure that we will get there someday.
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