Mum to the boy who frequently quotes that he is never understood in a neurotypical world. A tale of navigating life with Dyspraxia and Aspergers, via a detour in home education.
Sunday, 24 May 2015
Every school should have the Saint
To be able to hand him back over to the local authority and trust their expertise was something of a big ask where we were concerned. His key worker whom organised the EHC plan also recognised this and was full of reassurance. I will never forget that afternoon, leaning my head against the window as she convinced me over the phone that this unit was a good place. I was so scared, as previous posts will testify.
And she was right. To date the boy has started to reconsider further education, he has watched a year 10 boy do "work experience" at the IT department, to inform me that actually the IT department come to the unit for "work experience", however he is looking forward to his turn at this. He has gone out on an outing with the other pupils, asked to borrow his grandfather's Tom Clancy book, he has even played rounders.
Every morning I have dreaded getting up wondering if will he be making that terrible noise as he refuses to go. I don't think I slept that well to begin with. We have had days when he will be quiet or rather apathetic, these are normally after a change in routine or a plan that he agreed to initially but then feels he can not meet. Luckily the Saint and I have another option to offer that is more comfortable but keeps that attendance going. The educational psychologist when he assessed the boy wrote that it was better for him to attend a few hours every day rather than have long breaks because that then breaks the cycle of anxiety about attending. The Saint has told me repeatedly that his mental health is more important and neither she or us want him to stop attending regularly because he is being forced to do more than he can achieve. Such kind people.
He is studying English, Science, Maths and IT thus there is not much need for such long school days. The pupils also have social time if they wish. Some of the pupils such as the boy have a desk in a quieter room that is off from the main room and he will often spend his spare time watching documentaries which impresses the Saint no end. There is also an amazing fully equipped sensory chill out room which I think should be for the parents. Often if pupils are worried the Saint will take them in there to talk to them. Their school days start later and end before the rest of the school so that they do not have to cope with the hustle and bustle of school life. They are encouraged to attend mainstream lessons too with support but so far the boy feels unable to do this, again there is no pressure.
I often see the other pupils (all of them are boys) and it amazes me that they have all come from similar paths as ours. They smile, open the door for me and just seem so relaxed and comfortable. The boy gets on well with a couple of them, though quite clearly none have been invited over for tea as yet!
He comes home from school, cheeky, boisterous and keen to get some words in edgeways if only the girl will let him. I do not think this has ever happened in his school career before. The Saint and I often end our meetings stating that every school in the country should have this facility, now if someone could just pass me my magic wand...........................
Clairexxxx
Thursday, 30 April 2015
Me
Thursday, 9 April 2015
A Brief Guide to Parenting a Child with Dyspraxia
Monday, 23 March 2015
Tiny Sparks
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, 16 March 2015
Once you have met one dyspraxic, you have met one dyspraxic
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.
Monday, 16 February 2015
A balancing act.
Had one of those conversations with the boy last night that made me again acknowledge his level of dyspraxia. He was lying in bed and I asked if he wanted the door closed to which he replied that he needed some of the light from the landing so that he knew which way round he was lying!
I pointed out to him that he has been lying in the same direction for pretty much a year now, as we changed beds last spring. Surely by now he knew where his head was, this was not the case. We had a little chuckle that he was soooooooooooooo dyspraxic, quite a common phrase in our house and I bade him goodnight.
Isn't it amazing that something so instinctive for me and all of us neurotypical people out there is missing in people with dyspraxia? The boy for years has always required a light at night time so that he knows where he is, something that until recently I could not understand. When he sleeps in other people's houses the difficulties are further increased, he has fallen out of bed a few times because he can not feel where he is in relation to the bed.
The skill that we have in order to know where our body is, is called kinesthetic awareness. This relates to the information from the senses which inform us about our body, where the parts are, the space between our body and objects around . It can also tell us about the direction we are moving in and where our bodies end and the world begins. Whenever the boy had a growth spurt he would become particularly clumsy as he would need to learn that his legs were a bit longer which would then require him to concentrate more on moving them so that he would not fall over.
Before he was diagnosed with Dyspraxia, the boy was seen by an occupational therapist who diagnosed him with Sensory Integrative Processing Disorder. There is a wealth of information about this and I could describe it in more detail but I feel if I describe it as how it affects the boy, it will be clearer.The boys body recieves incorrect information from his muscles, hearing, vestibular and tactile senses which means that his development is skewed because he responds to stimuli differently. The visual sense is another route that can be affected too within this disorder. Children can also be high seeking so they want activities that require lots of stimulation ie rough housing, loud noises, fast swinging so that they can get the appropriate amount of feedback to their bodies. Or, like the boy they can be low seeking which means they avoid most playground apparatus, parties, brightly lit places, any type of physical contact because their senses are overloaded. Because of the misinformation, the boy's body learnt to adapt his responses as he felt would be correct for him. This means that although he responds differently he gets to the same place as everyone else, just in a different way.
So something like holding a pencil for example needs him to ascertain how hard to grip it. He is over sensitive to touch,so he would hold it too lightly but then that would mean it wouldn't be enough pressure to make a mark on the paper, so he would need to reprocess it all again so he could then function to use it. However his motor skills are affected too, so he would need to work harder to manoeuvre the pencil properly to write. Oh hang on, he can't balance either to sit on a chair and write at the same time, so more energy is needed to keep him upright, the pencil and paper still and now he is expected to look up at a board and copy whilst managing everything else. Who would have thought it could take so much work? Add to this a lower sense of self esteem as they observe their peers manage everyday tasks effortlessly and it is clearly obvious why intervention is needed early.
For a while, he had occupational therapy to help stimulate his senses properly. He would sit on a large swing in the middle of the room and be pushed to help him gain more control over his balance or his limbs would be brushed to help him desensitise. When he was in year 6, he decided that he didn't want to be different from his peers so the therapy stopped. I now slip the therapy discretely into his daily activities, such as a weighted blanket on his bed so that he can get the correct feedback from his body when in bed and I also get him to carry heavy shopping bags to stimulate his muscles. We have muddy dog walks where he has to walk on uneven ground, walk along logs to avoid boggy areas the whole time stimulating his balance (vestibular) senses.
The whole time then, these children with Dyspraxia are concentrating harder because of having to filter out incorrect information about their environment and then they need to plan and organise how to respond appropriately. In my boy's case this even needs to happen when he's in bed! No wonder he's tired.