By Rachel Tenacious
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.
What more could we want?
“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,
Frozen Defence Mode,
Theory of Mind,
Mental Health and Autism
Independence and Autism
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
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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
“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.”
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.
6th March, 2017
Written by Text by Lee Payton
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://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).
Written by Rachel Tenacious
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!
Written by Kevin Bugler
but all three are individual in their ASD and Personalities, but all have similar personalities and traits as myself.
Marosh was born June 2nd 2010, I was diagnosed with Nasal Pharynx Cancer in Feb/March 2011 and at the same time, my Wife was Pregnant with Samuel who was born August 31st, 2011. In May I had a neck dissection surgery followed by six weeks of Chemo and Radiotherapy which ended in mid-August 2011 (just before Samuels Birth).
Happily I am now 5 years clear of Cancer since August 2016 but I am yet to be discharged by my Oncologist as I have breathing difficulties. I am having continuous tests, but so far I have been diagnosed with Asthma and Emphysema but with inhalers, nothing has improved, and in fact, it has got worse, so I am due to go to a respiratory hospital in March this year after I see my Oncologist in February.
Marosh was diagnosed in August 2013 and Samuel was diagnosed 1 year later in August 2014. To be honest with Marosh in his early years it was good for me and my recovery that he was in his own little world either bouncing in his Tigger bouncer for hours or running around in circles so I allowed it to happen so I could relax more and deal with my health issues.
I went back to work earlier than my Oncologist wanted me to which was October 2011 (I was advised to recover for up to 2 years) as I love to work and I wanted to get out of my house. The company I worked for was very good to me throughout my illness, but due to loss of business and two restructures I kept my Job on the first restructure but chose to leave on a voluntary redundancy on the 2nd restructure in March 2011 (after Marosh’s diagnosis and before Samuel’s diagnosis). I got a new job which I actually started before I left my previous job as they needed my experience urgently to take in a new contract.
I loved my new job and my new start in my career where no one knew too much history etc. However, after August 2011 Ivana and I now had our thoughts realised with the diagnosis of our second boy Samuel, to be honest, although we kind of expected it, it still knocked us for 6. From this point on I did not know what I wanted to do at all, so we carried on me working and all the while my wife struggling on her own with two boyz aged 3 and 4 acting at times as if they was teenagers like Kevin & Perry. I did not know or was blinkered to how my wife’s life had become a prison until one day I witnessed my wife sitting on the sofa with her head in her hands, crying, while the boyz ran circles around her literally as if they were devils. At this point, I said I would stop working as my wife and my boyz needed me to give a little more support.
I left my work March 2015 and to be honest I have never looked back, yes I miss work and the people, friends and colleagues but I was going to work while the boyz were asleep and coming home rarely before they were in bed so I was missing everything and they was missing me. Soon after I gave up work Marosh’s speech and behaviour improved to his mum even the school noticed it at this time.
As far as I was concerned, I am not one to sit and do nothing. Before I had left work I became a committee member of the Hillingdon PCF and I started to run their website from March 2015 and now I am the Chair of the Hillingdon PCF as well as continuing to run the website. I also need to support other dads who are caring for Children with disabilities and SEN. So, I started a support and Social group called Hillingdon DADS in September 2015.
Anyway, that’s enough about me I think apart from I feel I should say that I started Hillingdon DADS to try to reach out to dads that will be in the same or different dark places as I had and to let them know they and we are not alone. We dads don’t like to open up. Especially if we have children with disabilities or SEN. It’s hard but we have a very diverse group of men from various backgrounds with very little in common apart from our children and yet when we meet the conversation doesn’t stop and we all even manage to even laugh at times and even cry (as we do) when we do want to share our experience or rant without judgment.
My eldest boy Kane, is a very clever boy and I am so proud of him. I can’t take any credit to what a great young man he has become as his mum, and I parted many years ago. I tried, I was not part of his life for too many years, but I am blessed that I have finally been reunited into his life. Although his mum and I don’t get on, I have to say Kane has turned out very well. He is currently in education in a Dutch University in where he is studying many aspects of Maths. I could go into more details of his education and how great he is but I will probably miss many and he will pick me up on it as he is a perfectionist in every way. So, probably best I say that what first made me proud when we reunited when he was 17. He informed me that he had left his school in order to do his A levels himself at home without any tutoring. He only had to attend the exams at his old school which he excelled in all of them. He is the only man alive that I won’t argue with as he is the only man alive I know who is probably more right than I (lol).
Marosh is what I would call a stereotypical HF ASD child with his attitude, behaviour, play, diet everything. If you are even slightly aware of ASD you would look at him and say is he on the spectrum. He has an EHCP at school and a fantastic one: one and although occasionally I have been called in a few times to issues he has had at the school he is getting there. His school love him as they know although he has some extreme behaviour he hasn’t got a bad bone in his body and he loves everyone. There was one time I was called into the school as Marosh had an incident, but when I was told I have to say I was a little bit proud, basically Marosh had a Meltdown and decided to run out of his class which he has done a few times but on this occasion. When he left the classroom, he slammed the door and proceeded to put a chair up against the door and hold his class hostage. I couldn’t hide my smile when I was being told and to be honest, I think they understand that although it is not right, it did show he had initiative, and he was a thinker! To me means far more than him having one of his many meltdowns.
I have a way with Marosh as he seems to be very similar to me and I kind of know what he is going to do before he sometimes does. We have great conversations even from the age of 3 we had moments where I felt I was talking to myself.
Samuel is the opposite of Marosh as in he is very quiet and although he is verbal he is very hard to understand which is multiplied with the fact I am a little deaf. I must admit I do struggle with Samuel more and I worry for his future more as I feel he will allow himself to be unheard even though he has plenty to say and he will get lost in the crowd. I am trying to toughen him up a little in his confident but that has started to backfire with his aggression to his mum, so I am trying other ways to make him confident by telling him he can do whatever he wants and as long as he likes it, it will be great. So far he does seem to be improving, and he is talking more and more (still not clearly but at least he is confident). We will still have trouble ahead as he still won’t defecate at school as he is embarrassed to ask for his bum to be wiped and the children laugh. Samuel also has an EHCP and a one:one which is still new but he seems to be a little better. To be honest, Marosh probably needs more behaviour control from his one:one whereas Samuel needs to keep focus while at school, again showing the differences.
When they are both at home I allow them to be a little more extreme in the hope they will have a place to release their anguish and frustration so they will do less in the outside world. This seems to work at least to some degree as they are a lot better behaved at school than at home, although we wouldn’t want to take them to a restaurant as their diets are so void from that of restaurants so it is not even worth the effort. We still try different foods but both like different foods and when you think you have one sussed he then changes his mind, we will not give up trying, and one day we will get somewhere even if it’s not exactly where we want to be.
All 3 of my Boyz are amazing and unique, and I am such a proud dad. People have asked me what it is like being a dad of an autistic child. I just say that every day they break your heart, but every day they repair your heart twice over and as long as you remember they do not mean anything through a meltdown but when they are calm they mean every word then that is a start to the understanding. I know my boyz love me unconditionally and they know I love them, Samuel may not know what love is fully, but he knows I will look after him, so it is what it is. I have been known to shout at them when they are both kicking off, or they get violent, I know shouting doesn’t work, but it is a way of venting for me after I’ve vented I talk to them calmly and slowly until they say they understand. Of course 5 minutes after they are at it again.
Still, since I gave up work Marosh and Samuel have made me a Dad and that is all I have ever wanted to be and more than that sometimes I am just as bad as them and loving life and their world as it is a wondrous magical place where there is no wrong or right only doing. I am aware I haven’t mentioned my wife much, so I have to say that she is my world and an amazing Mother. If you add up all the points to my life since 2010 and then I allow you to realise that my wife Ivana is only 28 years of age and she has had to go through me having cancer, Marosh and Samuels issues she deserves much better and the other reason I gave up work and I do as much as I can for my boyz is to try and give her some resemblance of a life back as when I was ill she gave me reasons to live too!
There is so much more I can say, but I fear I may repeat and ramble and or bore you but I will end by saying that a diagnosis is not the end but only the beginning of a very interesting and beautiful life if you allow yourselves to see through your child’s eyes and how they see everything how it should be which is why they react when we change things in their world.