So, I am back for a update after last years “Pros and cons of Home Education”.
I can’t start without something about me this time.
Two days before AKO Autism EXPO last year and two weeks before my 50th birthday, I was diagnosed with ASD. I had been self identifying as autistic for several years but never felt comfortable to be able to say out loud “I am autistic”, so a formal diagnosis was huge for me. It has given me the right to be me and to be able to have reasonable expectations of myself, to forgive myself when I mess up and to feel good about myself when I don’t. When I told H and her Dad that I had been diagnosed they were totally unsurprised and clearly unphased by the news. I guess it has bought out into the open the reason why I understand H so well and why I parent in such an instinctive way……. I know!
There was a new diagnosis for H too, one which answers a question we have asked many times over the years. How does someone who has so much to say become totally and utterly unable to communicate in some environments? It’s called selective mutism and it has troubled H for many years. We had tried to explain it to professionals but until we found an independent Speech and Language therapist who recognised it and gave it a name, we had been ignored. We have started work on a program of tiny steps to enable H to overcome this, but years of school based trauma and of never being able to express what she wanted or how she felt has left some significant barriers that will take time and hard work to overcome.
Moving on through the year we have continued to build on the successes of last year, and as the year has developed we have reflected on what works, what doesn’t, what is important and what isn’t, what are our goals and how do we get there.
When I wrote Pros and cons we had just started the Statement to EHCP transfer process, a process that is meant to take twenty weeks. As I write this in the middle of January we are on week 55. This week I appeared on BBC Breakfast to share some of our story. Our year has been incredibly disrupted by this process and I have had to work extremely hard to stay positive and continue to motivate H. I have felt at times that the LA have stolen a large chunk of what should have been an amazing second year of home ed, but when I look back I know that we have achieved loads and had loads of fun in the process.
H wanted to spend lots of time Stand up paddle [SUP] boarding last summer, so I decided to join her and had my own board for my birthday. We had so many great sessions at both the canoe club and a local SUP club and opened up a new social opportunity for all of us. Outdoors has always been H’s best place for social contact and her confidence soared in an environment she loves.
We spent time away, we swam loads, in lakes or in the sea. H had another surfing lesson at Discovery surf in Devon, she chose to learn to surf her SUP board and stood up on the first go. Her teacher was amazing and H was relaxed and surfing within minutes.
Over the summer H had a huge developmental leap and we had a full blown teenager in the house again. Her body clock went haywire and she stopped taking her melatonin. She was moving towards being nocturnal for a while which I found really hard at first but we went with it and adjusted our day accordingly. [As the year went on H took control of her sleep pattern and now takes melatonin when she wants to].
September was a time of huge change as some of H’s home ed friends went to college to start their GCSE courses and we started a new timetable, gradually introducing a maths and piano tutor and shortly after a music theory and bass trombone teacher. H’s maths teacher is absolutely brilliant in fact I would go so far as to say gifted. His creativity and patience are paying great dividends and his absolute determination to raise H’s confidence has almost reduced me to tears at times.
We already knew H’s maths and piano tutor and her lessons are at his house so that home can remain a “safe place”. Finding a music theory and bass trombone teacher who teaches in a craft centre was a stroke of luck and means that we can still avoid a formal schooly environment. Its not perfect and the teacher is still learning to speak “H” but she wants to learn and that’s what counts.
This process of gradually reintroducing H to formal learning has to be such a kind, gentle one. It isn’t going to go right every time but I am like a dog with a bone and will not allow her to be harmed by the process ever again.
There are so many moments when I have been so proud of H this year, moments that would seem odd to some such as how well she coped when we broke down on the motorway on the hottest day of the year, how she helped me to set up our caravan when I had towed it to Wales and wasn’t well, how the founder of Autcraft told me she is an awesome person [as if I didn’t know] and a more standard proud parent moment, when she played a trumpet solo in a flippin cathedral!
I am proud every single day
Along with finding Autcraft, H has found her tribe. She has made friends from the UK, Europe, the US and Canada. To hear her laughing and shouting over her headset while playing hide and seek on Minecraft is just fantastic. She is learning Swedish, German and Icelandic and doing what teenagers do.
A busy week all round, here there and everywhere, then somewhere in between?
So many times I think, boy I wish I could just put my feet up and sit here in silence, read a good book, or watch a funny film. I just never get round to it, always something to do. But what would I do if I did have some quiet time ?! I’m always thinking and feeling guilty that there is something that I should be doing, or something that I could be doing, or something that NEEDS doing. Am I making sense ?
Talking of busy, last Saturday we hosted our annual autism charity expo, and it was a huge success. I’ve never seen so many useful autism exhibitors, stalls, free clinics and outstanding speakers all in one place together at the same time. Add into the mix some charity colleagues, friends, LOTS of visitors and some lovely autism life dogs, and all the ingredients added up to equal one amazing recipe for success. It was a superb showcase to help many, and indeed it DID help so many, including myself! I was put in charge of collating details for WIFI. Lol lol ME !! WIFI ?! Bless, I thought no worries, I can make lists for that. But I’ll let you into a secret; whenever I hear someone mention WIFI I instantly think of our charity WIFA (Wear It For Autism) events ?? They don’t have any correlation with each other at all, it’s just me I get the two mixed up lol lol. Can you imagine if I’d of come back to people with a ticket for a WIFA makeover instead of a WIFI code?AWKWARD. They may of thought I was insinuating they needed to spruce themselves up a bit ??. Oops lol.
Then there was our sons transfer to an EHCP Special Needs School meeting. I’ve been so anxious about this, but of course I don’t show it, I keep it all in, suppress worries, feelings, thoughts, as I always do. But that’s a whole blog or two for another time. Once we’ve gotten to know each other better of course. I prefer to spread happiness and make people smile, feel positive, loved and valued. I needn’t of worried, armed with plenty of notes made whilst listening to fabulous barrister Sean Kennedy, we went in there meaning business, and we came out on top of the World having our Chris shyly join us at the end for a huge cuddle. Infact, I don’t want to tempt fate until we get our initial draft through, but the only thing that I was disappointed with (so far) was that they gave me a black coffee instead of a black tea?
I was also very lucky to be invited to a Finance Company launch at a performance car showroom. LOTS of fancy supercars such as Ferraris, MGs, and so many other fancy models I was totally in my element. Fabulous place. All those gorgeous cars, and GREAT SCOTT which car was I more interested in then ?! The DeLorean from the Back to The Future films. OMG. I was so obsessed with this film as a teenager, Michael J Fox I had a HUGE crush on, and I drove my parents mad playing it’s theme tune ‘The Power of Love’ by Huey Lewis & The News…. plus, it was a 12inch record so it went on much longer – I used to replay it for hours. ‘Can’t you play something else for a change?!’ Mum would shout up the stairs lol lol. So actually sitting in the DeLorean was a dream come true?Shame Michael J Fox couldn’t join me, he must of had a prior engagement. Maybe next time Michael. ‘Maybe’ if I have spare time of course – I will put this into my mind file of ‘NEEDS doing’ ?
The weekends here and hubbie managed to get MAN FLU. Urgh. Men are NOT good patients. Nope. They don’t seem to be programmed the same way. The noises coming from my hubbie last night were reminiscent of a UFO coming in to land with an alien trying to make contact using ‘noise’. He (hubbie that is) looked at me as if I was the alien, when infact HE looked more like an alien with his swollen beady eyes and snotty nose! (Sorry Mark?). Chris topped the weekend off showing autism DOES have empathy, with an added side of literally SAY IT HOW IT IS….. ”Ahhhh very sorry you have a cold Daddy, BUT the good news is; it will be much quieter for a while then!” ?
On that note, taking advantage of the ‘quieter’ time, I am gonna read my book ‘The Girl with the Curly Hair’ written by Alis Rowe, I bought it from our Expo, and was lucky enough to meet her.
“AspergerWorld : My Fairy Jam Jar” A new Book by Award Winning Disabled Autism Activist available for Pre-Order.
‘One Woman, One Wish, One Inspiring Story… Be Enchanted by Personal and Professional Insights into AspergerWorld.’
My name is Joely Colmer. I am a Multi National and World Award Winning Autism Activist, Motivational Speaker, Author, and I have a gift.
My gift enables me to experience the rich, vibrant tapestry of life, in all its glorious detail. You see, my gift walks hand in hand with my greatest difficulties, challenging me every second of every day, and embraces together with the very things I love most about myself; empowering me with my biggest passions in life.
You see, my disability is my gift; my gift is Aspergers Syndrome.
Welcome to “AspergerWorld : My Fairy Jam Jar”; a book penned from my rare professional and personal perspective. Here, I am a Fairy, living within a diverse, and rather quaint, Jam Jar. I live here shaded from view, often overlooked; Witnessing the world from a different angle, deaf to certain language and happily powerless to escape. Within my Jam Jar, I am here embracing my disabled wings, to answer your wishes, and gift you with rare personal insights, to challenge negative perceptions.
Can you feel that? The glistening of Fairy Dust as it settles upon your skin, granting your wishes, inspiring positivity within your mind? Go on, pre order my book, and take a creative peek into the untold world of Autism, embrace the Fairy Dust; and discover all about Life A.S. We See It, for only £9.99.
My disability has many fascinating depths that are hidden and often shrouded in mystery, misconceptions and negativity. Yet, with my book “AspergerWorld : My Fairy Jam Jar”, I help un cover those mysteries, and enable a positive understanding, inspiring hope with a ‘can do’ attitude to the autistic community;. Discover all about the Autism Characteristics, and the others aspects of Autism that are usually shied away from in media, so that you too, can be enchanted with the gift of understanding:
Gifts and Quirks, Shutdowns, Meltdowns, Communicating Appropriately, Frozen Defence Mode, Social Imagination, Theory of Mind, Life Skills, Learning Environments, Gaslighting, Mate Crime, Autistic Behaviours, Mental Health and Autism
Independence and Autism Volunteering
Cry for me and laugh with me, as you follow my life’s journey through the countless trials and tribulations of my difficult childhood. Through to the chaos of being a teenager with mental health issues, and adult life volunteering, life skills and independence. I am a role model throughout, providing personal and relatable stories, technical information with a humorous dialogue, and plenty of guidance and advice into supporting Autism Quirks into a reality. My book educates; igniting a positive rainbow of understanding into the heart of the Autistic Community.
In these ways, “AspergerWorld : My Fairy Jam Jar” is a unique and desirable non-fiction book, educating and creating hope within the Autistic and Special Needs community. I inspire my audience from the rare award winning personal, professional and young relatable Aspie female point of view; opening eyes from all backgrounds of Autism knowledge to pique their intellectual and emotional curiosity.
My biggest wish has always been to make a positive impact into the Special Needs, and Autistic Community; and with this book, I achieve these dreams and much more. As a Role Model to many fans nationwide, I wish to create a swell of understanding, to empower those on the Spectrum to learn how to sparkle with their gifts and self-understanding. I can provide that hope, understanding and clarity of mind that there are quirks to the disability too; especially if those who read my book, do pass on their gift of understanding into the Autistic community, themselves.
I aim to inspire and replenish the reader’s sense of self; that yes, they are more than a diagnosis, and yes; their disability does not make them naughty, bad or odd. It most likely, makes them clever, passionate, loyal, fair and honest. For parents, teachers or carers, the perspective I provide for my book does create a rare un told insight into how to best support those on the spectrum, with advice to follow and a fresh understanding of the reasoning’s of Autisms brain.
With Fairy Dust enlightening your mind, pre order now, read and be inspired by my book, and tell me, what shall your wish for the Autistic Community be?
With a sprinkle of Fairy Dust, may you too, be enchanted by “AspergerWorld: My Fairy Jam Jar”… www.aspergerworld.co.uk Read full reviews on my website
“…I wish I had this book at the start of my Special Educational Needs career… Every person who cares for or works with children and young people would benefit from reading this book… A truly inspirational book that gives a passionate and insightful view of life with Asperger’s Syndrome”
Lorraine Petersen, OBE Trustee of ‘Ambitious about Autism’ Charity UK Educational Consultant
“Miss Colmer invites you into her world… helping anyone understand what a child and/or adult on the spectrum might be going through…. I highly recommend… The best book on the subject I have read”
Denise Marie Mcintosh Host and Presenter of ‘Fairy Tale Access’ USA TV show Personal interest in Autism
“The book is more a person, than a manual; human and loveable…Central to her writing – and her attractive drawings – is Joely’s humour and humanity… As we read the book, we pick up more and more, through Joely’s stories and honest personal examples… One day [other experts might] compile a guide of Joely’s [book] material for teaching. Joely is quite an exceptional young woman.”
Jeffrey Newman Educational management Founder of the ‘Earth Charter’ Charity UK
It is with genuine regret that Shammi Kapoor will not be attending the AKO Expo which is taking place on Saturday 11th March, 2017 at Brunel University.
Shammi is a young man who has been diagnosed as having an ASD and also ADHD who has also suffered from depression; he was scheduled to speak about a therapeutic approach which he claims has been extremely valuable to him.
When inviting Shammi to speak at the Expo, the motivation of the charity was to give a person diagnosed with autism a platform to share their ideas whilst at the same time encouraging people to evaluate any claims made calmly, respectfully, reasonably and objectively.
Despite making it clear that AKO neither supports nor refutes the approach preferred by Shammi, a number of individuals have been very assiduous in their opposition to him being a speaker. It is noted with regret that many of the said protestations have what can reasonably be described as an unfortunate and unpleasant tone. Whilst no formal written, evidence based objections have be made to the charity regarding Shammi, concerns were heightened considerably when the charity was informed verbally by one of the agitants, a Ms Fiona O’Leary, that demonstrators would protest at the conference if Shammi was allowed to speak. Subsequent investigations found that Ms O’Leary’s promise of direct action had been repeated elsewhere and this raises many possible risks not just for the charity but also for the attendees, a significant number who whom will be children who, like Shammi, also have an ASD.
The charity is very aware that, having organised the Expo, it must not expose either the participants or attendees to any unnecessary physical or mental harm. The charity did consider increasing the security presence at the Expo, but this would impose punishing financial burden and drain the limited resources of the charity which, of course, it is under a duty to protect. Importantly, it is and a manifest security presence would destroy the nurturing and co-operative environment AKO tries hard to create. Finally, given the said behaviour, AKO cannot be absolutely sure that the promised direct physical action would be limited only to the conference if Shammi participated at this Expo.
Having regard to all the potential risks to Shammi, the other speakers and also the attendees, it is deemed the expo will be safer for all if Shammi is not present and therefore it has been agreed he will not attend the AKO Expo.
This is not a decision the charity has taken lightly but AKO believes that its hand has been forced as it cannot put the wellbeing of Shammi and the other attendees at risk. On a personal level, AKO wishes Shammi and his family well and offer him its sincere best wishes for the future as it is understood that this enforced change has caused him substantial distress.
In conclusion, it is now hoped that the conference can go ahead as planned and the charity looks forward to being able to continue its work supporting the ASD community.
Is a question we rarely hear on Planet Care. Unexpected life-changes come to us: ready, or not. Too often parents are caught up in: ‘the fights’ that can arise between them and schools, local authorities, health providers and against perceptions and prejudices which we can only hope may be history one day. Exhausting, isn’t it? But couldn’t the battlefield be made more level with some kind of armour? Couldn’t you use some superpowers you may not know you have?
The map doesn’t necessarily need to be the territory. Of course there are the very real practicalities of living with, and caring for, someone with special needs or learning challenges. But there is also the mental health and wellbeing of parents, siblings and care-givers. What may be useful for you in your on-going quest: might be some techniques which could help support change. A reframe of where you’re at. A recalibration of what you hope to see and how you’d like things to feel. Reminders of the good things which can light up our lives, if we remember not to forget them: the gifts life gives you if you choose to let yourself see them.
What would be the difference you would like to see in you? How much more equipped would you honestly feel you would like to be, to continue the journey? These are the kinds of conversations Cognitive Hypnotherapists have with a range of individuals and couples. A different kind of conversation.
Cognitive Hypnotherapy is a modern evidence based brief therapy, incorporating Behavioural Psychology and Neuroscience with Traditional Hypnotherapy, Gestalt, Neuro-Linguistic Programming, Transactional Analysis and other practical techniques. Some you may even take home with you. But what can surprise many, is just how much differently they may start to feel, see, think or hear things. Perhaps it’s just time for that different conversation.
Kelly Cavuoto, Ben Willens and Lee Payton are Quest Institute trained Cognitive Hypnotherapists (www.I-am.today) who will be exhibiting at The AKO Autism Expo, on 11th March 2017 at Brunel University. There will be slot times to look at techniques and discuss issues. Details and tickets can be found at: https://www.akoautismexpo.co.uk
In September 2015 a pilot study was published in the Mental Health Review Journal. It recorded that, using 118 cases measuring the effectiveness of Cognitive Hypnotherapy for the treatment of depression and anxiety, 71% considered themselves recovered after an average of 4 sessions. This compared to an average of 42% for other approaches using the same measures (like CBT).
When Tally first asked me to do a list of pros and cons of home ed I thought well that’s easy, there wont be any cons!
When we removed H from school she was the lowest I have ever seen her, she was unable to attend most days and even on a good day she was barely coping with getting through the day.
She had stopped attending all but one of her after school activities and even the one she was attending she needed to have a sleep before she could go. She was in a desperate state and rapidly shutting down.
We knew we couldn’t continue but we didn’t know what the solution was for us.
Then on the 2nd June 2015 we said enough we can’t do this anymore and we stopped sending her to school. Initially we signed her off day by day by texting the school each morning to say she was too anxious to attend. This continued for the rest of the summer term. We had one meeting with the school at the end of June but they were still in denial that H had any problems. The SENCO even said in that meeting that she still didn’t believe that H needed any 1:1 support despite the local authority having produced a draft statement stating that she was to receive 17.5 hours of 1:1!
H in the meantime was already showing signs of recovery. She started going back to her evening kayaking club and her scout band. She slept late and had lots of rest times in the day.
In those early days we had one rule and that was that she needed to leave the house everyday. In the beginning that was more for me but I realised quickly that she was benefitting too. Some days we went for walks, scoots, bike rides in our local park which is huge and very beautiful. We went to cafes for lunch or took picnics out with us.
We started to keep a photo journal of our adventures which was meant to be a strategy for keeping H writing but that fell by the wayside very quickly when it became clear that the trauma of struggling for so long and then suddenly not having to cope anymore meant that she refused to take part in anything that looked or felt like school.
We spent the summer making plans and joining Home ed face book groups so that we could see what was out there that we could join in with and also having fun and exploring new places while most children were still in school.
I was still working at this point so there was some Holly juggling involved but her dad works shifts and my eldest daughter and a good friend helped out. Once I broke up we went away and knew that our decision was made we were not sending Holly back to her school for yr 8, we were going to take a break and see where the next step of our journey led us.
The original plan was that I would keep working but due to issues over my pay I decided to give up my job as an early years SENCO and complex needs 1:1 and I would take responsibility for H and home ed.
Anyway, enough waffle, maybe more another time if Tally asks me for more! On to the pros and cons list:
Reasons we love home ed:
Flexibility , we can opt in and out of thigs as we choose or need to. We can go to activities and leave if H is not enjoying them. We can do something different each day. We can get up late if we have had a late night. We can have restful days if she has an evening activity.
Family time, because H’s Dad works shifts we used to struggle to get family time, especially when H was constantly exhausted from being at school. Now we can go out in term time during the week on H’s dads days off.
Places are quiet , Since H was very little we have had difficulty visiting popular places such as castles, museums, theme parks, zoos etc. Now that we can go in term time we have found a whole new world out there that she can access. She has never wanted to go to busy places but now she will happily explore and enjoy these places.
Learning through real life, H like many people with autism doesn’t transfer skills very well from one environment to another so now we do history in real castles and museums and geography at real rivers, lakes, mountains, parks, seasides. When H wants to cook something she can find a recipe, go to tesco to buy the things she needs, bring them home and cook them and share them with us.
Recently H took part in a home edders craft fair, she decided what she wanted to make, she ordered the materials from amazon, she planned and made the craft items, she priced them and we took them to the fair and sold them. She interacted with people she knew and didn’t know, she handled money and gave change. She was so pleased to have made some money too. When I sat down and thought properly about all the processes involved in that one activity it struck me what a great learning opportunity it was for her and the other children.
Being happy, H was never really happy at school, it was always very difficult for her, the noise, the smells, the busyness, the pressure, the uniform. Pretty much everything was hard for her and impossible on bad days. Now she is happy most days, she does still get very anxious sometimes about changes to plans or new groups etc but generally she is happy and keen to join in her activities. She has evening groups 4 evenings a week and is loving her music groups. When she recently started a new group where she knew on one, she found the second session really hard but bless her she was able to go and now she is settled and she loves it. We have met some amazing people through home ed and we have a nice group of familiar people that we spend lots of time with. There are people of all ages in the group from 5 upto parents. The children and young people are never left to fend for themselves they are always really well supported by familiar adults.
One for the girls, Periods, when H was at school she wasn’t using the toilets at all! This had been flagged by OT, EP and us many many times but school just didn’t see it as a problem. Thank goodness she didn’t start her periods while she was there or I don’t know what stress she would have been under. Now she is at home we can adjust our week and if she needs to be at home then that’s what we do.
I could probably ramble on forever talking about the positives of home ed but of course there is a flip side which is important to mention.
The hard bits:
Financial, at the moment I am not working and we are not getting any support from our local authority, however that could change soon as we are converting H’s statement to an EHCP and we may be able to get some support for some of the things she needs which are very expensive. We are currently running our home ed program on H’s DLA.
Therapy, H has never and still isn’t accessing any kind of therapeutic work for her anxiety and selective mutism, if she was in a specialist setting she would be. We are just about to start paying for someone to work with her because she still struggles with anxiety and is demand avoidant when she is anxious which makes life tricky. We haven’t been able to make much progress with this because we are not trained and are too close to her. Also although we have accessed parent courses and parent support groups to help her we just fly by the seat of our pants mostly.
Space, We all spend a huge amount of time together, which is both an advantage and a disadvantage. There have been times when I have felt like I am suffocating but I am getting better at getting myself some time out. H’s dad and I have a Thursday night date night when he isn’t working, while H is at one of her bands. We sit in costa and chill for 90 minutes and then go back and fetch her. She is getting better at being left at home for short periods of time, while we maybe go for a walk or even shopping. She wont stay away from home over night anywhere without us but that’s ok, we take our caravan away to lots of different places and get to explore together.
Changing plans, this is a tricky one and not in any way a dig at the home ed community who have helped us so much but there is a tendency for people to be much more laid back and because most of them are child led, if they wake up in the morning and no one wants to do the activity that is planned they simply don’t do it! This is a big problem for H and I because I may have spent lots of time preparing her for something and encouraging her to give it a try and then it doesn’t happen. Or if its something she loves and it gets cancelled she does become really upset and will sometimes retreat to bed under her weighted blanket.
Motivation, Its all up to me really, sometimes H finds it hard to motivate herself so I have to do all the work, that can be exhausting. She is currently getting ready to take her grade 4 trumpet exam, she is apparently desperate to do it but will she practice? Then if I suggest in any way that she ought to she goes into demand avoidance mode and then it can get very stressful.
Despite the negatives home ed is a million times better than mainstream school. If we ever find a small specialist provision that will consider part time or flexi provision maybe that would take some of the pressure off me but in the meantime we will stick with what we have, if it aint broke don’t fix it!
Is a question we rarely hear on Planet Care. Unexpected life-changes come to us: ready, or not. Too often parents are caught up in: ‘the fights’ that can arise between them and schools, local authorities, health providers and against perceptions and prejudices which we can only hope may be history one day. Exhausting, isn’t it? But couldn’t the battlefield be made more level with some kind of armour? Couldn’t you use some superpowers you may not know you have?
Recent Comments