How home education changed our lives!

Posted Thu 9th Aug 2018 at 06:00
by Dani Tasker

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I am Mum to an amazing 7 year old boy (or as he would say 7 & 3 quarters!) who has already had more than his fair share of challenges.  We are a small family of 3 which includes our son, his dad and me.  We have very little support and have struggled to find the right balance to help our son’s condition be as manageable as it is now.  He was diagnosed with Tourette Syndrome two years ago in September, but this was after watching his health and wellbeing disintegrate for over a year whilst at school.  We watched our son disappear before our eyes, he became withdrawn, anxious, so physically, mentally and emotionally exhausted, he was only able to attend school part time. 

He often said he hated learning, was unable to keep up with his friends and was becoming more and more frustrated and angry; until the day where we heard the words no parent wants to hear from their child "I'm a stupid boy!  I wish I wasn't here anymore!” This was in stark contrast to the little boy we had before school; he was happy, confident, loved to learn and was very engaged and enthusiastic. 

We lost our son and our lives to the stress and anxiety of not knowing what state he was going to come home in, and how productive or not the next school meeting would end up being.  We're not anti-school by any means and understand that some schools do amazing work with children who have TS.  However, sadly for us school became a destructive force in our lives and we had no idea that we could do anything to change it!  So we'd like to share our experiences as we hope to help other families in a similar situation.

Since starting school our son’s tics had changed from being very mild to him having painful tic attacks.  He was 5 and we were becoming more concerned for what his future would hold.  The more structured school became and the more restrictions placed on his movement, the worse things got.  Added to this there were some boys that seemed to have noticed that the more they hurt him, the worse his tics got.  No amount of meetings with the school helped, they were adamant that these boys were "good kids" and insinuated we were making a mountain out of a mole hill and that they hadn't seen anything!  Without backing from the school we tried an Individual Educational Health Plan which included supporting letters from his GP and advice from CORAM, a children's legal charity; all in support of him being flexi schooled for a short time.  This only gave us more opportunity to see what a negative impact school was having on him and gave us an insight into the possibility of Home Education, which we never even knew was a thing! 

Unsure if it was this particular school, we tried another smaller school and he had a great last few months of reception.  Those few months were the best we'd ever seen him while he was at school until year one started, when the structure and workload changed and again his tics started to become unmanageable for him.  After his diagnosis in September his specialist reassured us that some schools are just rubbish at handling things for children with TS and that we'd done the right thing moving him.  So we went back to his new School hopeful that armed with his diagnosis and some leaflets we would have a very different experience this time, unfortunately we left with false hope.  Six months on from his diagnosis we were having a different experience, instead of denial we had placations, all of which came to nothing. 

Near the end of his time there, we even offered to pay for training and sent the money in, but then had it returned with a note saying "it's not necessary"!  At one point I even had the head tell me she didn't want me putting my anxieties on my son and this was while I was trying to discuss his concerns about his school experiences with her!  She clearly had a very limited understanding of Tourettes!  Thankfully during this time we had a lot of support from Tourettes Action whose advice really made a difference to us.  However, during this time we also watched our son become more withdrawn again, so much he barely even played.  I couldn't leave his side, all he wanted was to sit and have cuddles, but his tics would be so bad that he would be bouncing off the couch, unable to sit, denying him the one thing that gave him some comfort.  Unfortunately again, as our son’s tics worsened, negative behaviour from his peers increased, which all contributed to him telling us he wished he wasn't here anymore - our world fell apart!  If he was feeling like this at 6 what would the future hold for him?  A very wise man told us "look after now and later will look after itself", it seemed so simplistic I wondered if this would actually have any basis in reality.  Yet that is exactly what we have done since withdrawing him from conventional education and the results have been amazing!  We have looked after now for the last year and a half and where now is today is a world apart from where we were when we withdrew him from school.  It's certainly a perspective that has helped to ease the worries we had about his future. 

He now loves his home ed life!  It's not been without its challenges, a lot is organised through Facebook and it can be hard to find a group of friends that you and your child connect well with, but it's worth sticking at it.  Before starting out you have no idea how much opportunity there is for socialising but you get to a point where you're turning things down so your child can have a rest day.  As we are not restricted to the national curriculum we follow his interests, so he is very passionate about what he learns.  He now plays the Piano and since attending Tourettes Action’s TicFEST event last year he climbs (and this was a boy who was petrified of heights), also more recently he's started a dance class, which he would never have had the energy for when he was at school! 

At his first dance class some children laughed at one of his vocal tics and instead of shying away and not returning, he handled it so bravely and wanted to write something for the dance teacher to read out.  This was a few months ago and he's still going and loves it!  There is such a variety of educational trips, for example: he's been to a sleepover with sharks, a sleepover at Warwick Castle, Science Festivals, Home Ed Camps.  He's learnt about the human body, space, wildlife and archaeology to mention a few.  Whatever we do he moves freely, which helps him manage his tics so much better, and having reassurances on hand from us has helped reduce his anxiety a lot.  When he's worn out and his tics are playing up, if he wants a stay at home day that's exactly what we do.  When he's out and about he's much happier, has a lot more energy and his tics are so much calmer.  His worse days now are better than some of his best days were at school. 

When asked what he likes about being home educated he said;

"I have more fun and get to spend more time with family and friends.  My Tourettes are not as angry being home educated, school did not work for me and it made my Tourettes very angry!" 

So to any parent/carer/guardian who is where we were, who feels trapped watching their child spiral, there is another way.  You don't have to rely on the "educational experts", you are your child’s expert, you know them and you know how to help them balance the juggling act that is living with Tourettes.  For us cutting out the middle man and taking on his education ourselves has been the best decision we ever made!  We found reading up as much as we could made a massive difference to how we felt about it all and in particular books like 'Free to Learn" by Peter Grey and 'A Funny Kind of Education' by Ross Mountney helped reassure us a lot.  Once we withdrew him from school he was in need of some serious de-schooling and it was hard to take a step back and trust in his innate ability to learn, but it paid off as he is now very self motivated and driven towards his interests.  Something else we could never have imagined a year and a half ago!  There are so many different approaches to home education, there's something to fit everyone.  For us at the moment a child led eclectic approach seems to be working best, but we can imagine as he grows and changes so will our approach.  That's the beauty of home ed, you can tailor it to their needs, their interests and you learn together, when you can do that you see your child come back and grow in confidence and ability.  What you have to remember is you don't need to know everything, you just have to know how to help them find things out and give them plenty of opportunities to socialise.

Another concern for a lot of people (including us) is not having any time to themselves anymore. Well you wouldn't believe it but having a happy child has actually given us more freedom as a family even though we are together more.  As he is more relaxed and happy, the constant need for comfort and reassurances has faded and I find myself able to relax, sometimes with a brew and a good book, which until recently I'd forgotten what that feels like!  I have more time to myself than I ever had when he was at school.  I could never have even considered spending time writing a blog for example, having the head space alone would have been impossible!  Thankfully the stress of his school days are becoming a distant memory and the concerns we had about home education have so far been unfounded.  We consider ourselves to have been very lucky, we were in a position where we could try something different, so we did and are thankful we did every day.  Don't get me wrong, deciding to home educate him wasn't the easiest decision to make, it does take a lot of effort and we still have wobbles to this day!  You have moments where you wonder if it's the right thing, especially with how against the grain it goes and having to deal with some people's reactions can be a bit trying sometimes.  But when we think about how much our lives have changed and see the differences in our son, at how happy he is and how manageable his Tourettes is now, it makes all the challenges and wobbles worthwhile!

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