It is the end of the academic year. Strictly speaking Moglets number 3 and 4 finished a good while ago. They have been arguing themselves into a blue fit for the best part of two weeks now, so you could say that the summer holidays in this house are a bit tired before they have even begun! But, as of 1.30pm today, Moglets 1 and 2 join the fray when they break up for summer. Truly then the fun begins, in every sense of the word.
I am struggling to believe that we have reached the end of Moglet number 2's first year at Secondary School. This time last year we were looking forward with equal measures of hope, excitement, fear and trepidation. We were on the brink of the next big adventure, the adventure that was Secondary School. On paper we were all ready, uniform in place, transition days had gone well, our meetings with the SENCo had given us warm and comforting feelings. And yet no amount of paperwork, of phone call, IEP'S and support plans were going to still that nagging feeling that all SEN parents have about this great big move. There was still that persistent and devilish voice banging away in my ear in the wee small hours asking all those real, silly and unanswerable questions. "Will he be OK? " " Is this the right place?" " Do the teachers really get it?" "What happens if this, that or the other happens?"
Luckily for us Moglet number 2 was, and still is blessed with a true pioneering spirit and dyspraxia or not he was more than ready to embrace the challenge of Secondary school. He threw himself into it whole heartedly. By the end of the second week, every lunchtime and some after school slots were taken up with various activities and clubs. There was an ever widening and changing circle of friends. Instead of dipping his toe in this great new pool of discovery Moglet number 2 was dive bombing it! I watched with a mixture of awe and relief, at his energy and enthusiasm, tinged with an edge of appreciation for any problems that might be on the horizon.
By half term my mummy radar was starting to quietly beep. Moglet number 2 was pretty exhausted and some of the clubs had naturally fallen by the wayside, much to my relief. I was hoping now that things would calm down a little and we could start to look at some of the issues that I thought were beginning to creep in, our old buddies; organisation and sleep, to name a couple.
But then life threw us a couple of gigantic curve balls and everything took a slightly different direction. Firstly I was told that I needed major surgery. It wasn't unexpected but neither was it welcome. We shoehorned the surgery into a time frame when Moglet Daddy wasn't travelling and we set about making plans to keep our family of six on track. Operation Coping was put in place.
Here comes the second curve ball. Enter 'The Cough'. To cut a long story short Moglet number 1 started coughing on the night of Halloween and he didn't stop until about two weeks into the New Year. It was unlike any cough I had ever heard before. Try to imagine Darth Vadar with a serious 60 a day habit and you are about halfway there. Antibiotics, steroids, x-rays, and even hospitalisation got us no near to a solution. Finally Whooping Cough was diagnosed, but not before he had coughed his way through every day and night, finally falling asleep at approximately 3am every morning. It was horrendous for him and certainly not the way we had envisaged my recovery from surgery. In all he missed 7 weeks of school and Operation Coping quickly became reclassified as Operation Survival.
So, not for the first time in our family lives, the emphasis from Moglet number 2 and his needs had shifted. We were all busy just surviving and Moglet Number 2 was moving forward in what seemed to be a perfectly happy way. I was more than grateful.
That bubble of gratitude burst and was replaced yet again by guilt, not long before Christmas when I opened a letter giving us Moglet number 2's Year 7 assessment results and his subsequent academic sets for the following term. Even in my sore and sleep deprived state I could immediately see that we had a problem. Neither results or sets in anyway reflected Moglet number 2's ability or previous levels of achievement. My Mummy radar was now beeping off the scale. One desperate phone call to Moglet Daddy, followed rapidly by one to school to set up at meeting and we were back to the business of making sure that everyone was aware of and were addressing his needs.
The thing is, even as I write this, I am aware that it is difficult to be clear about those needs in a logical and linear way. I am continually learning, and then relearning, that Dyspraxia and it's effects are anything but logical and linear. If I had to list Moglet number 2's main difficulties they would be as follows.
A) Tiredness
B) Organisation
C) Homework - completing it, recording it, remembering it...
D) Motor planning and Co-ordination
E) Sensory processing difficulties.
This list is by no means extensive and exhaustive but it does get to the heart of the problems. The issue is that they are so interdependent that they often become a web so tangled that they are impossible to separate, let alone try and convey to someone else.
And so began our real journey into secondary school life. We were lucky. As soon as I raised my concerns Learning Support and the Head of Year were on it like hawks. But we all knew and still know that there are no quick fixes. It speaks volumes that even today on the last day of term I have been in to school to sign off on the latest Ed Psych. referral, which will hopefully take into account how Moglet number 2's situation has changed and therefore the support he receives needs to change accordingly. Every child has ever changing needs, but with a child with a specific learning difficulty this is so vital to address.
The most difficult part of this year was bang in the middle. The pace of school life began to crank up and the honeymoon settling in period was a thing of the past. Moglet Number 2 was suddenly aware that he was in lower sets than he had even been in before and he was struggling to organise himself to deal with demands of the school day. He would fall through the door, white with exhaustion, unwilling to engage with any talk of what was happening at school. Socially things were ok, but academically were were in danger of grinding to a halt. Being so over tired mean that he was having chronic trouble falling asleep, setting up a very nasty and vicious, in every sense of the word, cycle. His sensory processing issues kicked in like never before. A marker of our problems was the fact that around March we had to abandon the duvet cover, because it was ' burning his skin' and it has not made a reappearance yet!!
Suddenly this label of dyspraxia that we had fought so hard for was, before my very eyes, eroding the self esteem and confidence of my son. Homework became a battle ground. Quite apart from the issues with not writing it down, or not having half the required resources, he was defeated before he even started. He was determined that he couldn't do it. He began to talk in negative terms about his dyspraxia, something which had never happened before. He swung wildly between shunning it completely and refusing to access support that was offered, to using it as a catch all excuse for any issue or behaviour that arose. Between us and working together, school and home had to come up with some kind of plan to pull him out of this pit of negativity. To show him that hard as it sounded, his dyspraxia was for life, but that didn't mean it was the end of his hopes and dreams. That just because life was taking him down a different and maybe more meandering path, it didn't have to be any less exciting, fulfilling or interesting.
Cue huge input from school. One to one tutorials, nuture group sessions, additional IT support, new referrals, reassessment by OT. And cue THE BLOG!!!
The Blog was my attempt to show to Moglet number 2 that the world of neurodiversity was made up of some fantastic and fascinating individuals and that he wasn't the only one dealing with its challenges. It was a spur of the moment decision after a really trying day; there were lots of those around that time! It was also a huge gamble! I was putting my family out there and hoping it was for all the right reasons.
It was a gamble that paid off. We are now three months into the blog. Twenty two posts later I am sitting here still in slight disbelief about what a boost our little blog has given my Moglet number 2.
Being a technology savvy kind of boy, it was the numbers game of social media that first grabbed his attention. The more 'likes', 'follows' and 'shares' we received the more his interest grew. Over the first few days he made more and more frequent, if discrete, enquires about the number of visitors and page views. But if the numbers hooked him then it was words that reeled him in. The day we received a message from a family in New Zealand, telling us about the journey of their wonderful, talented and dyspraxic teenager who was learning to drive (!!) , we turned a corner. This communication to my petrol head Moglet was like manna from heaven. Suddenly the future was bigger, brighter and it was car shaped! He started to believe that this label didn't have to hold him back.
The proof of his new found optimism came in one of the last meetings with learning support this year. He announced to the meeting that he wanted to do 'something' at school to mark Dyspraxia Awareness Week in the autumn term. Suddenly the boy who just months before was trying to cram his dyspraxia into a box and sit on it now wanted to wear it like a badge.
So I say to anyone who has visited, liked, shared, followed, commented or tweeted our blog, thank you. The turn around in the way my son now views a very important part of himself is down in no small part to you. Slowly he is starting to realise that this label might not be the millstone he believed it was, but may even be a gift that allows him to see the world in different way. But what ever role dyspraxia has to play in Moglet number 2's life it won't stop him doing what he wants to do. He is in control, not dyspraxia.
Thank you one and all.
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As the pace of family life has cranked up, the frequency of posts has declined. I could offer apologies and promises but in reality I would not be able to fulfil them. Our reality is that we are a busy family of six and keeping all the balls in air takes a lot of time and effort. As the end of term approaches we are caught up in a round of prize givings, sports days, end of term parties and performances. There hasn't been much time to write about our lives, once again we have been too busy surviving it! The guilt of parents is unavoidable. I have long since accepted that as fact. The trick is not letting it paralyse us and make it impossible for us to do what we need to do, to give our families what they need now and in the future. Back in the days following 'The Report!' I was so caught up in what I hadn't done and hadn't noticed I forget to see all the things I had done, had noticed and had provided.
As one close friend pointed out to me when he read the report, "I don't know much about Dyspraxia, but I do know Moglet Number 2. He will be fine." He was right, yes there were difficulties, allowances that needed to be made, provision to shore up and provide, but my lovely second born son hadn't changed over night just because we were one giant leap nearer to hanging a label around his neck. He was still Moglet Number 2. He was still good at all things he had always been good at,just as he was still challenging in all the same ways ! All that had happened was we had been given a little bit more information to guide us on the journey. Suddenly I began to be aware that although there were obvious drawbacks to a later diagnosis, there were also advantages too. Without any kind of label Moglet Number 2 had progressed quite happily through his life to this point. We, as parents, had never, within the boundaries of economics and safety, stopped him trying anything he had wanted to do. He loved being outdoors, he loved playing sport, he approach any new physical challenge with real joy and enthusiasm. Yes, it often resulted in bumps and bruises and admittedly he probably wasn't going to win points for style and elegance, but never ever had we thought of stopping him from exploring his physical limits. We had no reason too. Had we known about his dyspraxia earlier would we have been so liberal? In all honesty it is hard to say. I do know that as much as I fought against it, once I was aware of his potential difficulties I was never again quite so relaxed with new adventures. Don't get me wrong I never vetoed anything but my Mummy radar was always beeping loudly. Sometimes I miss the pre diagnosis days of not being the one filling in the extra forms, or quietly briefing the sports instructor. But its like Pandoras box. Once the information is out and known, you , the one who craved it have a responsibility to use it wisely and to good effect. However, nothing I do now will curb my son's desire to be active and adventurous, and thank goodness for that. The first blessing of late diagnosis. Moglet number 2 has struggled with some things, often unseen , for most of his life. That fact has made me weep and wail, but it has also provide him with a great resilience and an ability to look outside the box. He has found ways to cope with situations quite simply because he had to. His thinking patterns are often different,as are some of his physical reactions. The key word here is different, not wrong. We need people like Moglet number 2 to take us beyond the ordinary and to show us that there are new ways of approaching problems, new solutions that we have not yet seen and that there are more colours in the rainbow than we had ever imagined. Alongside these struggles and creative solutions Moglet Number 2 has always shown a great empathy for others; for those who are different and quirky and who may be perceived by a wider and more narrow minded community as not fitting in. I mentioned very early on in our chronicle that Moglet Number 2 will always fight for the underdog. He knows what it is like to be on the outside looking in and maybe, who knows, a late diagnosis has helped to develop this special sense of empathy of which I am so proud. A few weeks ago a question was raised amongst a group of special needs parents about whether they would wave the magic wand. The magic wand we have all imagined on our dark days. The one that would solve all the cares by taking away whatever need our child had. The answers were varied. Some people, possibly those in the midst of a difficult day, week, year, immediately answered "Yes!" And yet, once we began to discuss it further the black and white lines began to blur. My initial reaction was that I would love to take away the daily struggles Moglet Number 2 has. To obliterate the difficulties he has in organising himself, with remembering, with sleeping, writing. Surely to make all of those things disappear could only be positive? But then I thought what if those daily challenges have made my son the boy he is to day. The one with a wicked sense of humour, who finds something funny in even the blackest of situations. The one with the sparks of creativity and a love of the unusual. What if by banishing the dyspraxia, I dismantled the very personality of my son? You see I will never ever know what makes my son the way he is. But I know one thing. This thing called dyspraxia is part of him and although the temptation is to see its pit falls and its draw backs, I know there is a positive side. I know that it can teach and mould and give. And that is why I am not prepared to take any risks with any magic wands. Apologies for the lengthy gap between blogs. This week I have been busy...being a Mum! It was one of those weeks when that particular role that took all of my attention and a bit more. However, moving on...
I return to the day in February 2013 when the OT's report was in my hand. I read it and reread it a hundred times in the space of an hour, trying and failing to take it all in. It wasn't the magic diagnosis, we would need the paediatrician for that, but it was very clear about his strengths and his difficulties. I could only see the difficulties. I did all the right things with the report on a practical level. Immediately I emailed copies to his teachers, liasied with Julia, the OT, about coming into school to discuss the day to day implications. I wrote lists of who needed to know, I sent copies to family and friends, website links for them to look at with any questions they might have. I cocooned myself in this little nest of activity and practicality and, when I was sure all that was done, I got on with the real business, the business of feeling and indulging a mother's guilt. Suspecting, or even knowing your child has difficulties is one thing, but seeing it written down in black and white is entirely another. After I absorbed the report I felt many emotions; relief was in the mix and a real desire to move forward, to put the most appropriate support in place. But the one that kept coming back, that moved over me time and time again was the overwhelming love for my Moglet number 2, coupled with an equally powerful sense of guilt. I was experiencing guilt on so many different levels. There was the whole "How-could-I-not-have-got-this-sooner, -I-am-a-teacher-for- heavens-sake?" guilt, which I had been feeling throughout the process, but was now magnified to ridiculous levels. I had visions of all the children I had supported in my life skipping happily around, diagnosed and empowered, all getting exactly the right support, while my son was there miserable, struggling and failing. Of course, that was so far from the truth, but as most parents know lying awake at 3 o'clock in the morning, 'thinking' is often not the best stamping ground for the truth. It was like watching an amateur Tim Burton film, everyone in black and white and bit damaged and miserable. Then there was the "Well-that-explain's-the-time-when?" guilt, that went nicely with "How-could-you-have-got-cross-with-him-when-that-happened-guilt?" and the "You-handled-that-very-badly-didnt-you-guilt?". It was a whole new way of torturing myself, looking back at things that had happened in the past and regretting them. It was possibly the most counter productive aspect of the whole process but I just couldn't stop. I fell into the trap that most mothers do, believing that some how motherhood endows us with superhuman powers to see the future, prevent our children from feeling any harm and shoulder all burdens that come our way. Of course, its absolute tripe, and in our rational, sane and considered moments we all know that, but I guarantee I will be clambouring in and out of that trap for the rest of my life! Moglet number 2's lovely teacher approached one morning after reading the report and exclaimed, "Oh, my goodness, I feel so guilty. All those things I expected of him, that were so hard for him!" Her concern and consideration were genuine and so was her desire to move forward. Yet all I could say was " How do think I feel? I'm his mother!!" Then I began to move forward in to the "So-where-did-this-come-from-or-what-caused-it?" guilt! Another new subgroup! Was it something I did/didn't do in pregnancy? Was the fact that on the day Moglet number 2 was born his brother was on the children's ward with gastroenteritis linked? Was it linked to the fact I had to stop breastfeeding him at five weeks? Had I dropped him on his head and blocked it out completely? - All completely bonkers questions, and again typing them now of course I can see that, but I refer you once again to the witching hour, when the rest of the house sleeps and you are alone with your imagination and guilt for very dodgy company. And hey! I haven't even started on the whole "is-it-genetic?" guilt! I wasn't alone in this one; playing 'Spot the other dyspraxic in family!" became a popular past time for a while. No one person was free from scrutiny, and no firm conclusions were drawn. I gave myself a particularly hard time, once again. I mean I was messy and always rubbish at sport, and was I clumsy? Again, a pointless exercise! Everyone in the family was happy with their lot, no one was seeking a label, no one needed one. Time to put that game to bed! The final guilt is linked to acceptance. The acceptance that your child has a specific learning difficulty. That is now an indisputable fact. You have asked the question and you have got the answer. It doesn't mean you love your child any the less, in fact with your guilt dial turned up full and your overprotectiveness raging, you probably love them more than you ever did before. Yet there is a part of you that is struggling with the concept that things aren't quite what you thought they were, or hoped they might be. If you are honest, you don't want your child to have to face those difficulties every day of their lives. And, what if it does stop them doing something they really want to do? But you feel guilty even thinking this, let alone saying it. I mean they are your child! How can you doubt them? How can you question their future? Here the guilt needs to stop. This is real and valid response to any diagnosis, it's extreme uncertainty and it is coupled with a kind of grief. I have seen so many parents over the years struggle not only to come to terms with their child's difficulties but also find it impossible to express their struggle, because of the guilt they feel. A few years ago now a colleague shared a piece of prose with me. It is well known and many of you will have seen it before. I have used it many times with parents and carers over the years, and often it has helped, sometimes in a big way, sometimes in a small. I will share it with you now WELCOME TO HOLLANDby Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. This piece of prose, or the spirit of this helped me. I dug it out early one morning and read it several times. Later that day I received an email. It was an email from my closest friend. The one who I had started my teaching career alongside. The one whose classroom was next to mine in the very challenging SEN school where we had landed as NQT's. The one who had opened the connecting door at the end of our first day of teaching to find me on the other side, uttering exactly the same expletive at the same time. The one who had her babies just weeks apart from mine. That 'go-to-get-it-all- no-need-to explain-friend'. She got it and she sent me the message I needed.It sits today in my saved email archive. Forgive me lovely lady as I share it here. Moglet Mummy, Well done for having the assessment and I feel touched that you let me read it. I know it is tempting to beat yourself with a stick, but DON'T. A wonderful, wonderful, WONDERFUL mother is what you are. A plan can be put in place now and you can support Moglet number 2 on his new journey. He is a bright young man, with a lust for life that is truly infectious. He will achieve all that he is capable of because he has you, Moglet daddy and lots of people (like us) who love him very much. I know it feels raw but knowledge is power. Love you Meeeee xxxxxx We were surrounded by support like this. Grandparents, Uncles, Aunts, Godparents, all the same message. I was grateful for every one. Guilt be gone! Time to make a plan! Back to our quest for a diagnosis! We arrived at a hired hall for the OT to complete her assessment. I was armed with snacks to keep Moglet #2 going and a big, thick, engrossing book, allegedly to keep me distracted. My theory was that if I wasn't constantly watching, I wouldn't be second guessing what the final report would say. You see, I might have been stumbling around in the dark for years, but now my eyes were wide open. This meant that, particularly as I worked 'in the field', I was in some kind of over drive, imagining all sorts of issues and possibilities, driving myself more than a little bit bonkers in the process. On that day I was determine I was going to completely hand over my son to his assessment. I wasn't going to watch, I wasn't going to comment, and above all I wasn't going to write that damn report in my head. Yeah right!!! I did tuck myself in a corner, trying to lose myself in my novel, but it was completely hopeless. Every time I heard Julia give Moglet #2 a new direction or introduce a new activity my eyes and ears snapped to attention, and I was drawn back to what was happening in the room. Leaving wasn't an option. I had suggested on the drive over to Moglet #2 that I might wait outside and "Let them get on with it." No go. For the first time in this whole process, he was anxious about the assessment. I could immediately see was being completely selfish; ashamed, I backtracked. Of course I couldn't leave. This wasn't about me or what I was feeling, it was about my son and what he needed. Once again I needed to get over myself and just get on with it. The assessment started with gross motor skills and balance. Very soon it was obvious that Moglet #2 was struggling. He wasn't distressed or panicking, in fact he was happy and calm, even having fun. Julia had put him completely at ease, but he wasn't finding it easy. Any worries he had about the assessment appeared to have vanished, while mine were still very much there. I sat in the corner and set about mentally beating myself up. How could I have not seen the extent of his problems? With balance for example? I mean, look at his core body strength... The assessment was long, but at the end Moglet #2 was as fresh as a daisy, the mark of a skilled OT. "All done!" She announced breezily. "That was brilliant! I now have a comprehensive picture of his fine and gross motor skills, plus his sensory profile." I waited, wanting a few scraps of information to take away. She looked steadily back. "Report will be ready in three days, I will email it straight to you." She was giving nothing away, completely professional, she needed time to crunch the data and draw her conclusions. I knew that, just at that moment I didn't like it. The next few days passed, the assessment as far as Moglet #2 was concerned was forgotten, any anxiety forgotten too. It takes a lot to worry my second son for long! Any lasting anxiety is usually related to the performance of Manchester City! Finally the phone rang and it was Julia. "I am e-mailing the report now. It's password protected. Read it, digest it and then ring me back when you are ready." I opened the email and there it was, shiny and new, winking at me from the inbox. I opened it. In a nutshell, in clear practical diagnostic terms, the report told us that Moglet#2 presented with : 1) Significant problems with motor co-ordination difficulties, consistent with a diagnosis of DCD (dyspraxia) 2) Significant problems processing sensory information in the sensory seeking quadrant. 3) Border line problems in the sensory sensitivity quadrant 4) Clear difficulties with postural control and balance activities. Difficulty maintaining an upright position against gravity. Related to poor processing of information from the vestibular ( balance and movement) sensory system. 5) Significant difficulties with proprioception. 6) Difficulties with bilateral coordination and sequencing. 7) Marked difficulties in handwriting, particularly when 'free writing', i.e. Not copying. So, Moglet Parents, how do you feel about that? Until next time... Ladies and Gentlemen, it falls upon me to announce that ... the EFFORT grades are in!!!
And, more than that... cue drum roll... we have not one but two 5's!!! Cue happy dance, cue much merriment! Now for all of you sitting there in bemused silence, about to leave this blog forever in a cloud of confusion, let me explain to you what 'effort grades' are and why I feel they need a blog post all of their very own. For those of you already 'in the know' then please bear with me. Or just skip this part all together! The choice is yours! Effort grades are issued by our secondary school, and I believe many others, each half term to track the effort students are putting into each individual subject. They are graded from 1, which equates to "Where were you? Have to listened to anything? Serious concerns!", up to 5, which equals, "Fantastic! You are doing a great job!" Let me at this point say, I am not complaining about effort grades. I think they are a valuable resource for parents to keep up with where students are. Especially once they reach the realms of secondary where suddenly everything seems that little bit further out of your reach, where children turn to teenagers and communication is just a bit harder, to put it mildly! Moglet Daddy, however, announced quite unprompted and unexpectedly, in one of many meetings at school this year that he doesn't pay much attention to effort grades. Cue sharp intakes of breath, me included!!! A bit left field there Mr C., thanks for the warning!!! How to rock a shaky boat in one easy lesson! He then went on to explain his bombshell, and I found myself agreeing. You see his point was that Moglet number 2 and all those like him, those with the hidden disabilities I keep banging on about, are putting in tremendous levels of effort that go unseen, sometimes just to get to the lesson. Imagine for one minute if you can, sitting in, lets say a Maths lesson. It's a new concept, so you really need to be focusing. But.. actually right at this moment, you can't feel the chair underneath your bottom. You know it's there, you aren't daft, without it you would be sitting on the floor, but actually you can't feel it. So you start wriggling just to make sure it's there. Suddenly you can feel it again. That's better, now you can concentrate. As long as you keep wriggling, you can concentrate. What the teacher is explaining is getting tricker, you need to really concentrate now. The wriggling intensifies, its ok you are keeping up. "Oi" Someone is shouting in your ear. You have bumped into the person next to you, or you have kicked the chair of the person in front of you. You see, you were swinging your legs and because your spatial awareness is a bit out then you didn't even see how close it was. Everyone is looking at you, its quite embarrassing. The teacher tells you to focus and stop fidgeting. Oh no! She has also noticed that your shirt is hanging out and asks you tuck it in. But the thing is, your sensory processing radar is cranked right up today and wearing that shirt between your trousers and your skin feels like having a hundred screwed up crisp packets around your waist. So now, you can't feel the chair and you want to scratch your belly to pieces. It doesn't help that you didn't get to sleep last night because when you are overtired from concentrating, which you are really trying to do, then its really hard to wind down. But back to the lesson. Its no good, concentrating on this is just beyond you at this moment. You put your hand up and ask for a movement break. You hate doing this. It singles you out as different!! What 12 year old boy wants to be different, but your parents and Learning Support have drilled this in to you, and deep down you know it helps. The teacher agrees, you go into the corridor and have a wander about and push on the wall, trying to wake up your muscle receptors and convince your body to behave. A sixth former wanders past, makes a comment, so you scuttle back to your lesson, not quite a long enough movement break but your street creed can't take much more! When you get into the lesson then they have nearly finished the intro. You listen for the a few more minutes, trying not to jiggle and upset anyone else, aware also that you have missed a whole chunk of explanation. The teacher tells everyone to get on. You reach for your bag to get everything out. The teacher makes a beeline for you to explain what you have missed. When she arrives she sees that you haven't got your equipment out yet. She reminds you gently that you should do this as soon as you come in. The thing is if you get it out straight away, then you know that you will fiddle with it. Teachers don't like that so you tend to wait until you need it. Also you have a habit of snapping pencils when you listen and your mum is getting cheesed off with constantly buying them. You don't mean to snap them but you don't realise how much pressure you are applying to them when you are engrossed in something else. Anyway you stop getting your equipment out and the teacher explains what you missed, you think you get it. She goes to help someone else and you return to your bag. Your heart sinks you have forgotten your ruler. You remember now you had it last night doing that Science homework but you must have left it on your desk at home. That's right you were tidying up but then the phone rang and you were distracted, it went clean out your head. You get through the lesson, but because of your late start you haven't got to the end of the task. You need to complete this for homework. Something else to remember. Because homework is a whole new minefield. Remembering to put it in your planner; copying it down from the board; when you can't write without watching your hand; remembering it is actually in your planner when you get home so tired all you want is to switch off;making sure you pick up all the sheets at the end of the lesson; making sure you don't lose the sheet in the meantime. But at least today there wasn't a sports lesson going on on the field outside, because that big window you're near can be really distracting when there are people run past it and calling out. Anyway its science next, that's ok, apart from that dripping tap, that's really distracting!!! Don't get me wrong I know my son is no angel, I know that aside from all the things I have listed here, there is the usual inattentiveness and the distractions of being a 12 year old boy in a classroom. Beating the same drum just one more time, nothing I have described here should be seen as an excuse for not learning but there are also clear reasons why dyspraxia children struggle to make progress. There is also nothing here that can't be address with a little bit of thought, discussion and empathy on the part of the teacher, parent and child. We are incredibly lucky, because right now we have that. We have developed a good working relationship with school and they are ready to listen when we need them too. but it works both ways, sometimes we have to swallow a bitter pill too, sometimes the changes have to come from us. It's a work in progress there are always bumps and blips. We have to make adjustments and compromises on a regular basis, because along with everything else it is, one thing Dyspraxia isn't is linear. Frustratingly, for everyone involved, especially him, what Moglet number 2 can do one day, one week, may not be what he can do the next. It's a bit like juggling with jelly, or maybe even herding moggies! Fun, but flaming hard work!! So forgive a harassed and undoubtably biased Moglet Mummy if I believe that Moglet number 2 puts in huge amounts of effort everyday, and forgive me some more if I think that those two 5's are pretty damn amazing!!! Before I continue describing our adventures with the OT (!) I would like to focus a little on the book, she recommended to us. 'Dyspraxia - The Hidden Handicap.' It took me a long time to get past that title, well actually the subtitle- The Hidden Handicap. The word handicap is emotive and powerful. It conjures up all sorts of images, personal to each individual. But I am willing to wager a hefty bet, that it doesn't bring up an image of my Moglet #2, this seemly healthy, able bodied young man. Does he have the right to that label? I have had the privilege, and it is a privilege, to work with students who have the most challenging needs. I have seen families deal 24 / 7 with medical, physical and psychological issues that knock what we have on our plates into a cocked hat. They go through things on a daily basis that some of us can't image. They have incredible, moving and often difficult stories to tell. And yet... That doesn't however mean that Moglet # 2's story is any less valid. It is our story and we have a right to tell it. Whenever we want. Wherever we want and however we want. We decided to tell this story not to gain sympathy or attention, but to connect with others in the same situation. To prove to my bright , clever Moglet #2,who had suddenly hit a brick wall and hated this dyspraxia thing so much, that he could live with it and manage it. That it could be a positive. The connections we have made, we are making and, hopefully, will continue to make are invaluable, so thank you. My child has a right to be the best he can be and, if telling his story, and making his hidden handicap visible, is part of that process so be it. We are not belittling anyone's struggles, we are simply telling our story and maybe raising awareness too. Moglet # 2 is much more than dyspraxia, just as his older brother is more than his dyslexia. But, it is an element of who he is and what makes him tick. How important an element depends on the day, the time, how much sleep he's had, stress levels- I could go on. If you were going to spend significant amount of time with Moglet #2 I would be telling you about his dyspraxia. It impacts on him and you need to know that. It's hidden, you see. Dyspraxia is not used in our house to excuse any kind of behaviour. It may be a reason but never, ever an excuse. Do we ever say, "That behaviour was ok because you have dyspraxia." ? Never. But we might say, "I think that happened because of this. It maybe linked to your dyspraxia. How can we work together to stop it happening again?" The hardest things about a hidden disability, is that you can't see it, obviously! That means you, the sufferer or the carer have to make a decision about whether or not to tell someone about it. There isn't a wheelchair or a white stick to broach the subject for you. It's down to you to mention and then explain, quite possibly to someone who has never heard of your condition, how it effects you. They might be skeptical, I mean you "look alright." They have to trust you and listen. They have to take you at your word. Finding the right time and judging when and how to tell your story is a skill all on it's own. It requires maturity and it requires bravery. It's one we are working on. Forgive us if we don't always get it right! I believe that since we bought that book the subtitle has been changed. 'The Hidden Handicap' has been changed to 'Developmental Co-ordination Disorder.' I prefer the old version. Because Dyspraxia is about so much more than Co-ordination. And we should be working hard to make it visible. So the next step was to see the Occupational therapist. Having a report to back us up from the Ed Psych meant that, in theory, we could have requested and achieved an appointment with a NHS OT. But once again we felt that time was short. We felt that we had lost so much precious time stumbling around in the dark, that the thought of being added to what I knew to be a long waiting list, filled us with dread. At this point, let me stress this was not about us having no faith in the NHS OTs. I knew through my work how skilled and dedicated they were. It was far more about me have having lost faith in my own skills. How could I have missed this? Guilt, meant I couldn't bear to wait. So once again we opted to pay. I know we were so lucky to have this choice and believe me I was,and remain more, than thankful. The OT recommended to us lived a goodly distance away, but she turned out to be worth the travel time...and more. Her name was Julia and she was practical, calm and empathic. Moglet Daddy and I drove through the beginnings of a snow storm for our first meeting. She had asked to meet us alone, without Moglet #2, to get to know us and our concerns. On this occasion there was no holding back! Now I was too fuelled by anxiety, peppered with occasional relief, to care about being or even appearing vaguely normal!! She listened, asked more questions, made notes and finally dropped the bombshell. "From what you are telling me and from what I have read in his Ed Psych report I think there is a high chance that Moglet #2 has dyspraxia. However I can't diagnose that." Cue stunned silence. "I beg your pardon?" "Only a paediatrician can diagnose. They have to rule out any other possible neurological causes." Cue terror. Other neurological causes? I had never considered that there might be something more serious and fundamentally wrong. Moglet Daddy's turn. "So are you telling us we should be seeing a paediatrician?" More that a little weariness in his voice. We have drive over an hour in the dark and snow on a 'school night'. A wasted journey is not an option. "No, I am telling you that you WILL need to see a paediatrician. After you have seen me." I can tell Moglet Daddy is not happy. "Why don't we just go to a paediatrician now?" What he means is "Cut out the middle man!" Julia remains calm. "Because without evidence, like the concerns of a qualified OT, the paediatrician won't see you. Or they will see you but the first thing they will do is refer you to the OT" So we stay. We talk, explain, share. She tells us that the next step is to see Moglet #2 for a full motor assessment. She will also assess his sensory profile. The assessment will take 2-3 hours. We set a date. As we leave she recommends a book to us. It is entitled simply "Dyspraxia- the Hidden Handicap ." By Dr Amanda Kirby. "Read this" , she says. "But be warned it is very comprehensive." I look at her, puzzled. "Isn't that a good thing?" "Yes. But dyspraxia is complex, far reaching and each diagnosis is individual. Read it with your son in mind." It was the best advices he could have given and the wake up call I needed. Yes, we were on a journey. Yes, we were discovering and re-evaluating. But Moglet #2 was still Moglet #2. I needed to remember that. Once again I begin with gratitude. Thank you to everyone who has visited, read, followed,shared, commented on, liked and messaged this blog. Believe me it means a lot. Because every time you perform one of the above actions you make someone smile. The confidence that is growing in Moglet number 2 cannot be measured, nor can it be denied. To know that many people are sharing, empathising and learning through our journey is a tremendous feeling. So thank you. Throughout the process Moglet Number 2 was his usual horizontal self. We were open and honest with him right from the start, stressing that everything was for his benefit, that no one was looking to 'catch him out', just help him. He accepted that. That seems such a throw away, gloss-over- it, sort of statement but it's true. We were lucky that he was laid back and accepting. Throughout all of this, up to this point, the worries had been ours. There might have been some frustration on Moglet number 2's part and maybe waning interest, but he was always on the whole happy. I am thankful for that. I know it isn't so with all children who struggle through school with unidentified or undiagnosed problems. We were lucky, and for that I am grateful. The Ed Psych gave us verbal feedback on the day. Quite unexpectedly. Her opening gambit was "You have a very bright son." Immediately I am torn. Inside I am doing secret cartwheels, whilst at the same time I am terrified she is going to tell me, I -we- have imagined the whole thing, that we have wasted her time and a chunk of money. That I need to get real and get on. She continues "You have a bright son. His IQ is in the top 93% of his peers. Which is why he has coped so well for so long. His profile shows clear dyspraxic tendencies, which he has managed with various coping strategies." Cue guilt! Cue relief! Cue uncertainty! How is it possible to feel all these emotions at once whilst smiling and nodding at the kitchen table. A bit like a nodding dog in a car. Nod! Smile! Nod! Smile! Moglet Daddy is asking intelligent questions. I am nodding and smiling. "What's the next step? " I hear him ask. "What do we need to do?" I snap back into the moment. Guilt can wait, I need to pay attention. "I will write a formal report. The next step for you is to get Moglet #2 to an Occupational Therapist for a full motor assessment." We are one step closer. |
CategoriesRachelI am a Mum of four fantastic children (or Moglets), one of whom just happens to have Dyspraxia. ArchivesP.s The RSS Feed button is the FOLLOW button!!! In case you are technically challenged like me!! Or follow us on Twitter: @rmc19
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