Sunshine Samuel

"So - the little guy in the picture is me - Samuel! Hello and welcome to my Mum's first ever blog. Apparently it is going to be all about our family's journey, but I think it will mostly be about me because let's face it I am pretty amazing. I do my best to keep Mum on her toes 24/7 so I have no idea how she will find the time to write this blog but she wants to do it - I just hope she doesn't think I am going to be any less demanding now she has become a blogger! I was diagnosed with Autism just under six years ago but all that really means is that I am different and that doesn't have to be a bad thing - if you think about it we are all a bit different and if you keep an open mind and heart life can be happy and fun whatever your differences are! Over to you, Mum (oh - her name is Lou, by the way)".

PRESENT

25 February 2018

PRESENT - adjective (existing or occuring now) / noun (the period of time now occuring). The photo is via apod.nasa.gov and is their Astronomy Picture of the Day today.

It has taken me five very difficult years to learn to live in the present. Ever since Samuel's autism diagnosis six years ago I have lived in the future - due to not having a time machine it has all been in my mind of course. I created a terrifying image in my mind of Samuel's future and have literally been living in fear. This has taken its toll on my emotional state and also my physical health. I have learned this past year to let go of these fears. I would be lying if I said they didn't creep back in at regular intervals but just acknowledging and accepting that these images are not actual future realities - that they have in fact been created purely by my fears and do not actually exist - has helped me to focus on, and live in, the present.

The downside to living in a 'made up, terrifying future in your head', is that the time you would have been investing into positive things that you want to do, gets consumed by the time devoted to your ever demanding fears. The one and only upside that I can think of, is that you have had time to research and obsess about literally dozens of ways in which you can reduce the impact of this terrifying future and put plans in place. This we have done (there it is - 'the royal we' - time to introduce my husband, Mark) and are actually in the process of moving to Scotland in the next six months, leaving our home on 'the Island'. This idea was planted by Mark two years ago but has been driven rather aggressively by me (more on this to follow in future posts) but the important thing to note here is that through actions taken in February 2018, it is happening. Through other actions taken in February 2018, I have been home schooling Samuel for three weeks (the next post, 'Academic Plateau', will explain all). Big decisions have been made and positive things are happening within the month of February 2018.

So I am feeling confident enough to address something that I have wanted to do for a long time. I have always loved creative writing and my dream is to write a book about the funny, beautiful and positive side to having a child with autism. It has been suggested to me several times by good friends and my husband (good friends - Mark wants to take the credit here so you can fight it out amongst yourselves as to who suggested it first!) that I should start a Blog. It would encourage me to write more regularly than I am and would also give me a feel for whether people were actually interested in reading about my experiences of raising a child with autism. Mark paid for me to do a Writing Course a while ago and after sending a few assignments all covering the subject of my child and autism, it was suggested that, 'this subject may become boring quite quickly', and I have to say that nearly ended my book dream there and then.

However, today's date is 25 February 2018, and the stars are aligned (don't they look pretty? Thanks NASA!) so for better or worse, right or wrong, interesting or boring, today I start my blog!

Introducing - 'Confusion, Delay, Love, Patience and Chardonnay' - a blog about living in the present with the two greatest gifts (aka presents) I have - time and my beautiful boy.  ❤  Lou

A LETTER TO SAMUEL - DAY 83 OF LOCKDOWN 2020

Dear Samuel

I am sitting in the kitchen with The LEGO Batman movie on the television and I am listening to your usual mash up of Disney Pixar and Thomas the Tank Engine and Friends scripts. I have the back door wide open, despite the rain, because rain or no rain, you continue to use the paddling pool and trampoline. Your animated shouts and shrieks combined with your laughter is the only good thing I can focus on right now. I don't know how much of this lockdown you understand, my love, but it is now day 83 and the World seems to have gone completely mad which is making me feel very sad. When I explained to you, 83 days ago, why your school, swimming pool, cinema and park were closing, I described Covid 19 to you as, 'a nasty bug that had arrived and we all had to stay in our own homes to avoid it, apart from essential shopping'. I didn't realise you understood until I was leaving for Tesco one day and you shouted after me, 'be careful - don't let the nasty bug catch you!'. These past 83 days has given me a lot of time to reflect on our journey thus far and for the first time in a long time, I really wanted to write something - I wanted to write a letter to you. A little while earlier you were chasing me with a toy bear as you pretended to be Mor'du and I had to be Merida from Disney Pixar's movie, Brave. It reminded me of how brave you have always been apart from that one day when you hid from me and literally retched with fear when I asked you to put your school uniform on. You had struggled to fit in for so long but on this one day when I saw how broken and scared you were, I knew that just like Merida, you needed to change your fate. You never returned to that school which meant we spent all our time together and we conspired together, you and I, and came up with a plan to do just that - to change our fates.

It took time and patience but within 15 months we were together in my car driving off the Isle of Man Steam Packet ferry, Ben-My-Chree, into Heysham. Your Dad was driving the Van and was particularly grumpy that day, not entirely happy to be leaving his home. I had never driven in the UK and had never experienced motorways, so we agreed to meet up at Gretna Green for a break and to make sure I was going the right way. I remember telling you in the car that we had to pretend we knew where we were going, and I did get us a bit lost once, but once I saw signs for Carlisle and then Scotland, I can remember shrieking with elation and relief with you laughing along with me in the back of the car. We pulled up into our big driveway and looked at our new beautiful home. You said, 'you did it, Mum, you did it!'. Such joy, Samuel, do you remember? Life has a funny way of showing you the right path and, despite you not attending the school we thought you would and us not actually being able to buy the new build house we had put a deposit on, we ended up in exactly the right place. Change is very hard for you but you were brave, just like Merida. 

I have watched you these past 18 months. I have watched you bravely starting a new school - the first day for 15 minutes only. We built your time up in school at your pace and eventually you were in school from 9.15 to 15.00 and loving it.  I have watched you bravely settling into your new home, going to busy parks, to cinemas, to huge swimming pools and theme parks, apprehensive at first, but eventually taking them all on with attitude very regularly. 

Then on 23 March 2020 - more change as we all went into lockdown. You have lost access to all of it and I know you are finding it hard, my love, but you will be able to enjoy them all again very soon. Even a new school, which will be hard too but, once again, you will be brave and you will conquer. So why did I want to write you a letter today - I think pretending to be Merida and having to run from Mor'du, got me thinking about your bravery and how you have made me so much braver than I ever was before you came into my life.  Do you remember how Merida was so good at using her bow and arrows? I read this quote on a poster of Merida a while ago. It read, * 'an arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means that it is going to launch you into something GREAT. So just focus and keep aiming.'  So we need to keep focussed and keep aiming - I love you more than anything else in the World and I am so proud of you - my brave boy who had the courage to change both our fates. * You're my favourite Deputy! * To infinity and beyond

Lots of love, Mum. X     

* - taken from Disney Pixar scripts of both Brave and Toy Story

❤  Lou

 

Are You Brave Enough?

ACADEMIC PLATEAU

A Plateau

If you say that a process has reached its plateau, you mean that it has reached a stage where there will be no further change or development. I came across this picture when I searched for an image of a plateau and it looks quite beautiful, doesn't it?

The first time I ever heard the words, 'academic plateau' was in our last school meeting and it really offended Mark. I have to admit that the comment went over my head at the time as I was more concerned with getting to the bottom of the reasons for Samuel's 'disruptive' behaviour, but after discussing it further with Mark, I could totally understand his reaction and shared his offence at a professional suggesting that a child could reach their academic plateau by the age of nine years old. 

So, why were we in a meeting with the Unit Manager, School Head and their boss four weeks ago? The past year at school had been a mixture of real highs and lows but the last four months had been all lows. Samuel began displaying the usual 'not wanting to go to school in the mornings behaviour', which I put down to a reasonable and even 'normal' child's reaction to having to go to school. However at pick up I was told he had not joined in any group activities and was 'happiest' in the sensory room on his own. Then came the disruptive behaviour - throwing items, knocking over furniture, kicking out at teachers. Each time I would ask for examples of what had occured just before the disruptive behaviour, i.e. what was the reason for it? I never got an answer - the closest I got was, "he just suddenly started ......" and the furthest I got was, "I wasn't actually in the room at the time......". Samuel's behaviour at home was calm and happy until I mentioned the 'school' word and got him dressed in his uniform. He began beggng me not to take him to school. I couldn't cope with it so I took him out of school for three days while we waited for an emergency meeting to be organised.

The meeting began in a very friendly and non-confrontational way. Mark and I thanked them for everything they had done for Samuel thus far. I expressed my deep concern regarding Samuel spending so much time in a room on his own and asked questions such as, 'how many times is he going into a room on his own and for how long?' Also, 'what lessons is he missing when he is in the sensory room on his own?' I talked about needing more information regarding his disruptive behaviour. Why does it start and how are they dealing with it? I asked the Unit Manager for her opinion on Samuel's behaviour and I also asked her what her expectations were of Samuel. She replied that she did not know why Samuel's behaviour had changed so much but that she did have a solution to offer which would help to give us a clearer picture. She produced a 'six scale mood / emotion' chart and suggested that we all work together using this scale. This was a mood scale of one to six - one being happy and calm and six being extremely angry and aggressive. The second column on the Chart was the action to be taken in response to the emotion shown. When I dropped Samuel off in the morning I would inform them of his mood and at pick up they would inform me of his mood(s) that day. It would improve communication between myself and the staff in the Unit as 'we would all be singing from the same hymn sheet' and all staff would log Samuel's mood into a book at the beginning and end of their shifts so we could look back over it and hopefully it would offer some clarity regarding reasons for his behaviour.

Another chart .........hmmmm....rings a bell .... The Unit already had a 'chart' on the wall informing us parents at pick up of their child's behaviour that day. You have probably seen something similar - there is a big shiny star on top, underneath a 'behaved well', underneath that a 'children who need to be reminded to be good' and at the bottom, well no words were needed - if your child's laminated name was stuck here you knew they had not been good - it was the 'row of shame' right at the bottom of the Chart! All the children had their names laminated and stuck to the Chart at the end of the day.  The Unit Manager had thrown away Samuel's laminated name tag for this behaviour chart a while ago - I remember it very well. There were days when I would come in to collect Samuel and would look at the Chart confused by the fact that his name tag wasn't on it. "Look down further", they would say to me and I would allow my eyes to drop and see Samuel's name tag stuck on the skirting board just 5 inches above floor level. You get the picture! Then the emotional blackmail began. "Samuel, your Mummy will be so unhappy if you are not on the gold star today". I was never sure if I approved of this but they were delighted with the results and I got to see Samuel's name tag on the Star quite frequently until he sussed the game out. This one day at pick up time, I was told that, "Samuel had been very naughty all day and his name was on the bottom of the Chart but as soon as I turned my back he took my chair and pushed it against the wall. He then climbed up on the chair and took his name tag from the bottom and put it on the Star". Her face was definitely not happy but I was so proud. "Wow", I said, "that is initiative - he understands the problem and knows how to fix it!" I was so proud of him but the Unit Manager felt differently and removed his name tag from the Chart forevermore.

So - you can understand my reaction to another 'chart' solution. I was not going to hold my breath in anticipation of this offered 'fix' and thank goodness I didn't as I would not be sitting here writing this blog if I had.

It was while I was studying this new six scale mood / emotion chart that Mark was speaking about how amazed he had been in his Son-Rise sessions with Samuel of late and how Samuel had been doing academic things that he wasn't even aware he could do. He had asked what expectations, if any, they had for Samuel academically. Apparently this was when the 'academic plateau' comment was made. I handed the Chart to Mark and we all agreed to give it a go.

The meeting continued and we talked about how Samuel was at home, about how we had been taking Samuel to a private clinic in Northern Ireland, Therapy Foundations for Education, whenever we could over the past three years and also how we were getting on with our home program that worked specifically on social communication via the Son-Rise program. It was suggested that the Son-Rise home program combined with the School may not be working or even fighting against each other, to which we replied that the Son-Rise program was definitely working and that it was school that was concerning us the most. We talked about the reasons why we were looking to move to Scotland and how they would assist with the transition. It was also pointed out to me that I am not legally allowed to remove my child from school 'out of protest' and that there were procedures to follow. We talked about the possibility of home schooling and I stated that this was something that I was apprehensive to take on by myself. It was then clarified that there was no-one available to assist with home schooling but if it was something we decided to do, then there was a form on the Government website that we should complete and return to the School.  The meeting came to an end and it was agreed that Samuel would return to school the next day.

So – six school days followed. My morning comment was always the same – “he was a one on the scale until I mentioned going to school, at which point he shot up to a four”. The first pick up, I was told that, “he was a two, a three, a four and a five.” I asked what had happened in between – why had he risen throughout the day? The response? “I haven’t been in all day so I couldn’t say”. The second pick up I was told, “he was a three all day” (not bad!) but the following four pick ups were all, “he has been a six ALL Day!”  The last day, I was told that (despite being a six on their chart), "he was allowed out into the playground where he knocked a smaller child over and grazed their face – it was very unfortunate.” So – if he had been a six on their scale and the corresponding action that they should have followed was ‘remove from other children and place in a secluded calm area’, why was it that he had been allowed into the playground? I was raging inside but I calmly collected his stuff. On the way out, one of the assistants asked if I wanted to take ‘his book’ home with me. I had assumed that she was referring to the book in which they all had to note his mood at the beginning and end of their shifts but instead she showed me a book with a one to ten list of numbers he had written and a dot to dot exercise that he had done. I wasn’t able to hide my disgust and told her that he was way past this level and that we were working on 100+ at home! I asked to see the book relating to his mood chart and she just looked blankly at me saying, “I don’t know anything about a mood chart list”. So I asked if she had been making a note of Samuel’s mood at the beginning and end of her shift, to which she replied, “no – I don’t know anything about that”.

My summary of the Six Scale Mood / Emotion Chart was that it had served one fantastic purpose. To clearly show Mark and myself that school was undoubtedly the problem that had to be removed. That night I printed off the home schooling form and e-mailed the school asking for an urgent meeting to discuss whether 50% home schooling would be an option as I was concerned that Samuel would lose his daily school routine and that he may struggle to get it back again after it had been removed. The next school day, Samuel was half dressed in his uniform and hid from us upstairs. Mark and I both tried to soothe him and finish dressing him but he became so hysterical with his sobbing that he started to retch on the floor in front of me. I looked at Mark and said two words. “IT’S OVER”. Mark went into the school with the completed form and was informed that 50% home schooling was not an option and that it was all or nothing. I had prepared a timetable of my proposed home schooling for them to see but they told Mark it wasn’t necessary for them to see this information but if we ever wanted Samuel to return to school then we should contact them. For better or worse I had just become a Home Schooling Mum.

That was a long explanation of how I heard the words, ‘Academic Plateau’, wasn’t it? I think it was necessary though. I have been home schooling for three weeks now and I am no longer offended by the words. I have the utmost respect for teachers – it is a hard job and I believe that more often than not they are doing the best that they can do. Autistic children learn differently so you know what? They have to be taught differently too! It is not the fault of the Unit staff if they have not been shown this and I am sure there are lots of things that teachers could say to parents that may be taken as offensive but causing offence was not what the Teacher was trying to achieve.

When do any of us stop learning? Seriously - when? Think about it (I have). I believe we all reach our 'education plateau' on the day of our deaths. We may choose to stop learning academically and therefore reach our 'acadamic plateau' and that is OK. However, I don’t believe anyone has the right to decide if another person has reached their limit regarding academic education, and certainly not if the one being judged is a child. There is only one person in this World whom I will listen to regarding Samuel’s academic plateau and that is Samuel himself.

Looks like a plateau would be a lovely walk with a dog or two though, doesn’t it? ❤  Lou

 

 

D(iagnosis)-DAY - part one

Which box will they put him in?

It was a lovely sunny morning in late May 2012, and I was sitting in a room waiting for the first professional involved in Samuel’s first assessment at the Pre-School Assessment Centre (PSAC) to arrive. I heard a steam train in the distance and smiled to myself imaging all the trains currently jostling for position on my lounge floor at home. ‘Peep, peep! Hello, I’m Thomas!’ What would we have done without Thomas and Friends? I must have seen every one of all available Thomas DVD’s, listened to the name, number and colour of a good one hundred trains, both steam and diesel, and read every book. A stack of books covering the subject of Speech and Language Therapy caught my eye on the opposite bookshelf. Samuel had certainly taken his own, sweet time with his speech but he was definitely getting there. Just the day before I had heard Samuel’s first ever conversation with a lady in our local supermarket, all taken directly from a Thomas script. The lady had dropped a box of bottled Appletizer so there was glass and liquid all over the floor. Samuel was sitting in my shopping trolley and declared, “Luckily, no-one was hurt”.  “No, my lovely”, the lady replied, “no-one is hurt”. “What a mess!” Samuel went on, “the fat controller will be VERY CROSS”. The lady laughed loudly and then whispered, “don’t let him hear you call him that!” She was very sweet but I did wonder if she knew who the ‘fat controller’ really was.

It was a relief that his speech had started to flow as it was the reason Samuel had been sent to the PSAC in the first place. Samuel was at Nursery three mornings a week and the lady who ran it had asked me if our Health Visitor had completed his ‘three year check’ as yet. I replied that no, this had not yet been done, and she very gently suggested that I should request it ASAP as she was concerned about the lack of speech that Samuel had in comparison to his peers at the Nursery. Following a home visit from our Health Visitor, I had been given one afternoon session per week at the PSAC, which after three months was increased to two afternoon sessions. That day’s assessment was six months after Samuel started attending PSAC. I would be seeing five professionals that morning, some of whom would have ‘studied’ Samuel’s behaviour while he was at PSAC and some would not but all would be asking me questions, taking notes and asking me to fill out forms. I was expecting to be in that room for at least a couple of hours.

There was a knock on the door and in walked the Occupational Therapist (OT). I had met her before on an afternoon ‘sensory course’ for parents, in which she explained all our senses and offered possible problems our children would be struggling with. She had told me that afternoon that she had not actually spent any time with Samuel on a one to one basis as he ‘had been very resistant to interacting with me’. I spent a good half an hour with the OT and she filled in a few forms and took notes. When she was finished she promised she would be ‘observing’ Samuel while he was at PSAC in the very near future. (A future post will explain just how many years 'in the very near future' would be). 

The next person I was expecting was the Speech and Language Therapist (SALT) but apparently she was signed off sick so a PSAC teacher brought me in a questionnaire to complete covering SALT. I had met this Therapist before too. Since Samuel had been at PSAC, Mark and I had been keen to do as many courses available to parents as we could. I had embarked on the ‘More Than Words’ course that was organised by SALT but unfortunately I could not complete it as she was signed off on long term sickness before the course had finished. I wondered in amazement if she had been signed off sick for all the time that had passed in between or if this was a new period of long term sick leave.

Professional number three – enter the Dentist. A lovely young woman who made notes of the few foods / liquids that Samuel would eat and drink and spoke to me about teeth brushing. Mark and I took care of Samuel’s teeth but it was a daily fight in which we brushed his teeth while trying to avoid being kicked and punched. She advised me about the recommended ppm in toothpaste and advised not to worry that Samuel struggled with rinsing out as it was OK to leave the toothpaste on his teeth following brushing. We also spoke about special ‘sensory brushes’ and all sorts of ways to make teeth brushing more appealing for Samuel including a Thomas the Tank Engine tooth brush timer toy.

The Educational Psychologist was next. A very nice lady whom I had met once before – the first half of our meeting had been just me on my own and the second half, Samuel had been brought in and she observed us together for about fifteen minutes. Today, once again, there was a questionnaire for me to complete followed by a question and answer session during which she took lots of notes.  

I had drunk four cups of tea and eaten several biscuits but my energy levels were dropping so I had nipped out to make a coffee as well as a call of nature just before the final professional – the Paediatrician (not the one that Samuel was assigned to within the local hospital but obviously one that worked within the PSAC) - arrived. She was a grey haired lady who looked very tired. It looked like she also had lots of other reports on Samuel that she was reading in between asking me questions. After about fifteen minutes, she put down her paperwork and looked directly at me. “Do you know what autism is, Mrs Armstrong?” “Autism? No, I don’t think I do”, I replied. Then there was silence between us and my mind started panicking – I must know something about it – THINK! “The movie, Rain Man, was about someone with autism!” I don’t know if I was expecting some credit for remembering this but she smiled at me and said, “Samuel’s Key Worker, Jenny, and one of the teachers, are going to come in to talk to you about your son’s autism now, Mrs Armstrong.” She stood up, looked down at me and offered her hand for me to shake, and then she left the room.

I don’t know how long I sat in that chair waiting for Jenny but I felt my pulse quicken and my breathing was weird – I could breathe in but not out. In my mind, denial – ‘Samuel does NOT have AUTISM!’ Followed by anger – ‘most of these IDIOTS haven’t even spent FIFTEEN MINUTES with my Samuel!’ Followed by panic – ‘I need to speak to my Mum ……… and Mark. SHIT!’ The door behind me opened and I looked around to see Jenny, Samuel’s angel of a Key Worker, and the only person whose opinion I truly valued due to the fact that she spent most of her time with Samuel whenever he attended PSAC. We locked eyes and my stomach rolled over, I thought I could taste bile. Don’t be sick, don’t be sick, DO NOT BE SICK, I told my stomach. Jenny moved my coffee cup and put down a glass of water and a box of tissues in its place. I had worked in a Human Resources department long enough to know what this meant. Jenny and the other teacher sat down in front of me. “Samuel is not autistic, is he, Jenny?” “We are 95% sure he is”, replied Jenny's colleague.  I took a deep breath in and wailed, “but I don’t even know what that means!” When I exhaled, the tears came and Jenny moved her chair so she could wrap her arms around me. Then it was just a matter of sitting, listening and crying. Weeks ago, when we had booked in that morning’s assessment, it had been agreed that in the afternoon, we would all meet together in a room to go over all the results and agree on the way forward. Mark had been at work all morning but had booked the afternoon off so he could attend. I realised that Jenny had done me a kindness by discussing the decided diagnosis with me before the afternoon meeting, so that I had time to prepare and compose myself.  I couldn’t let Mark walk into that meeting without speaking to him – if anyone was going to break his heart that day it was going to be me – not a room full of strangers.     Lou

 

D(iagnosis)-DAY - part two

Post incomplete - more to follow

AUTISM AND NARCISSISM? Doctor Lou recommends one of your five a day …….

Chardonnay (just one of my five a day)

I think I loved my husband before we even met – he is the most caring, generous and passionate man I have ever known and is also my best friend. However, we got together when he was 44 years old, and between the time he turned 50 and now, we are on, I believe, his third mid-life crisis…. and he loves to talk about it! It is difficult to explain how the daily ‘talk’ can be both repetitive and changeable at the same time but it is both mind numbingly predictable as well as confusing and, while I love the man to bits, a day with Samuel takes up every bit of patience I have so by the time Mark gets home I am sucking through a straw at the bottom of my patience tank. I searched through a dictionary looking for a word to describe my husband when in his mid-life crises and found this.

Narcissist (noun) – someone who is excessively preoccupied with themselves

Communication with a narcissist is quite problematic – given that their minds are dedicated to what they are both currently saying, and what they are about to say, it makes hearing others almost impossible. This dedication to the art of continually hearing themselves speak, makes repetition inevitable and even more tiresome than the scripting of an autistic child, and I live with both.

‘How do you do it?’ / ‘I don’t know how you stay so patient and calm’, they say to me, especially since I had been home schooling. The truth is I have managed to avoid mind numbing and sleep aiding drugs because of just one thing – one of my ‘five a day’ in fact – the grape! Specifically the Chardonnay grape (in liquid form of course - wine)!

After a full day of being with Samuel who will have ‘scripted’ (explanation on ‘scripting’ to follow in a future post) all day with myself being involved in each ‘script’ I am as tired as I have ever been at any time in my life, thus far. At 5pm, when I have given Samuel his dinner and allowed him to watch a movie so I can think about preparing dinner for Mark and myself, I pour myself a glass of my favourite chardonnay. The first one perks me up and gives me fresh energy.

Later on, by the time Mark had been at home for a couple of hours and been on his exercise bike, eaten his dinner and had a bath, I would have heard all about his day at work, what he had eaten that day, where he had been for lunch, whom he met for coffee, how he was generally feeling (which covered exhaustion, boredom, irritation, bowel movement, nose running, coughing, sore throat and general aches and pains), he would settle on our couch and start again from the beginning. In fact this could be the third time I had listened to it as Mark usually calls me at least twice a day on the telephone. The second and third glass of chardonnay ensured I was relaxed enough not to care about hearing it again and doing my best to listen to Emmerdale and EastEnders throughout. Also, thanks to chardonnay, when it was bed time I was able to sleep like a baby even though Samuel had attached himself to me like a limpet and, in spite of my menopausal hot sweats, remained there until morning.

I have strict rules regarding my chardonnay – NEVER DRINK AND DRIVE and NEVER DRINK BEFORE DINNER TIME (lunchtime drinking only acceptable if not driving while on a holiday treat with girlfriends and Samuel is safe at home). Anyway – just this Wednesday I was reminded how challenging my evenings would be without chardonnay – when I had an unexpected lunchtime with both Mark and Samuel.

Samuel and I had a timetable for our week, which went as follows: -

* Monday – tidy up all of Samuel’s toys and clean the playroom followed by Son-Rise with swimming between 4pm and 6pm.

* Tuesday – Son-Rise followed by walk to park, park play, walk along a stream and running up and down the blue bike ramps (weather permitting).

* Wednesday – trip to shops and have lunch out (McDonalds) followed by Son-Rise.

* Thursday – Nana’s house

* Friday – Jump Zone followed by Son-Rise.

Samuel and I were supposed to be collecting Mark from work and having lunch at McDonalds followed by a visit to the shops after returning Mark to work. However, that morning Samuel decided that he did not want to do this – he wanted to go to Nana’s house (I explained that Nana wasn’t in her house as she would be out all that day). Then he decided that he wanted to go swimming (I explained that we had been swimming two days before on Monday and how it didn’t open until 4pm anyway). A meltdown occurred with Samuel refusing to leave the house, hysterically shouting, “we have lost Daddy – Daddy and chips are lost!” “WE HAVE TO GO TO NANA’S HOUSE NOOOOWWWWWWWWW”. I phoned Mark to advise him of the situation and he agreed to get a takeaway instead and come home for lunch ASAP. Over lunch I explained the problem to Mark – detailing how we could not go to Nana’s house today and that swimming doesn’t open until 4pm and anyway, we had gone on Monday. Halfway through my detailed analysis of this morning’s meltdown, which Mark had come home to help me sort out, he went glassy eyed and began telling me all about how exhausted he was. While he was talking, Samuel came in and joined us. He seemed calmer so I asked him what we were going to be doing tomorrow, hoping he would calmly answer, ‘we are going to Nana’s house’. However, Mark replied, “maybe you could go swimming or to the Wild Life Park? Would you like that, Samuel?” You get the picture – even though I had given him the information he needed to help calm the situation and remind Samuel of his regular itinerary, he had obviously not heard any of it and felt it would be most helpful to throw in two new options. These options would have been fine if the Wild Life Park was open during the week this time of year (which it wasn’t) and if it wasn’t for the fact that SWIMMING DIDN’T START UNTIL 4PM!

We ate our not so happy meals and Mark returned to work, leaving me feeling my usual state of exhaustion, four hours earlier than usual, dreading the following day’s meltdown if Samuel should demand that we visit the closed Wild Life Park instead of Nana’s house.  It was only 1pm – tea and biscuits would be fine – some rules should never, ever be broken.

This was just a one hour, unexpected lunchtime visit but as it is the most recent example, I am using it. I could regale you with tales of long, repetitive and obsessional ‘chats’ (only one person talking you understand) about how he is feeling on a daily basis regarding, for example, how his life has changed since Samuel started home schooling (well – his hasn’t changed at all but mine is unrecognisable - I am too tired to talk about it however) / how he feels about our impending move to Scotland / how he feels about his upcoming retirement, and, of course, how his body is both looking and feeling, but I won’t. The main reason being because I need to conserve my energy but also, dear reader, as it may not be Dinner time in your house at the time of your reading this, I wouldn’t want to drive you to drink!     Lou

 

TO FOCUS ON THE DARK IS TO LOSE THE LIGHT

Be your own Candle in the Dark

Post incomplete - more to follow

HEARTBREAK

HEARTBREAK (overwhelming distress / grief / suffering / unhappiness / misery / sorrow / sadness / anguish / trauma / heartache / pain / hurt / agony / angst / despondency / despair / dejection / devastation / desolation / torment / torture)

I recently returned from the Autism Treatment Centre of America, for probably the last time, after having completed the last of three courses.  On this trip I had spent money and time concentrating on myself because while I had not admitted it to anyone, I had hit a wall about two months ago. The wall was a traumatic wake up call. After four full months of home schooling Samuel alone, I realised I had run out of steam and even my dear friend, Thomas the Tank Engine, could not help me.

Our forthcoming move to Scotland was not troubling me because I knew there was a school there with experienced and trained staff, and that once there and in the system, Samuel and I would receive help and I could think about doing something for myself, even if it was just to find the local swimming pool and swim for an hour or get my hair done for an hour or buy a paper and have a coffee with myself for an hour – just one hour every day.  No – it wasn’t the forthcoming move that bothered me – even if I had to move with Samuel alone - I would do it in a heartbeat. What bothered me was the thought of another five months of trying to take care of Samuel alone – to do Son-Rise and home school alone. Son-Rise is not supposed to be done alone – you need a team to make it work. The same applies with schooling but I had ended up here alone trying to do it all and that was not mine, nor Samuel’s fault. Taking him out of school whilst on the Island was absolutely the right thing to do.  Ever since my waters broke seven weeks early, this Island had let Samuel down at every single turn and moving away was the only light I could see, having dug black holes for five years, it was time to go. However, I still had another five months to serve before my release date.

What to do? I felt so physically weak with every passing day. It would take me a whole day to change a duvet cover – I could barely lift my arms. Samuel would find me on the couch, give me a cuddle, put a pillow behind my head and tell me to fill a hot water bottle, make a cup of tea and have a rest. He was a total angel but that made me feel even more guilt about the fact that I had come to a complete standstill – I felt like Tin Man and I was totally out of oil! I had a constant screaming in my head that was becoming unbearable and I would wake in the morning and a terrible thought would enter my head – ‘if I had died during the night I wouldn’t have to feel like this ever again’. I was so scared – why was that thought anywhere near my head? I couldn’t take care of Samuel feeling this way. I had to do the unthinkable and ask for help. It took all my courage, but I arranged a free evening and sat down with my best friend and told him how I was feeling.    

My best friend and I had made vows to each other twelve years earlier - among other things, to love and cherish each other in sickness and in health. My best friend had suffered with his mental health years before we met, so I was confident he would understand and support me. Due to our impending move to Scotland, he had negotiated redundancy from his permanent job and was now in a temporary contract with only two weeks notice being required to leave so I was hopeful that he was now in a position to help me at home with Samuel. 

My best friend surprised me by not really addressing my feelings when I first confessed them, but instead talked about what he was doing and how important it was. I took a deep breath and repeated the words, ‘I sometimes think about dying – I am scared that I may be having suicidal thoughts. Could you finish this contract now so you can stay at home and help me until the move when Samuel returns to school? We will probably never get the opportunity to spend five months with Samuel and work with him intensely together again’. My best friend sighed and told me I needed professional help and then went on to talk about his temporary contract and all the responsibilities he had to his employer. He needed to do a good job and confirmed that he would not, under any circumstances, leave his temporary contract at this time.

I felt the break deep inside me and felt hot angry tears on their way so I ended the conversation and went to bed. I did not want to show my tears and I refused to beg for my best friend’s time as I had expected it to be given gladly – he had always been so generous when it came to gifts that I assumed he would be as generous when it came to the most precious gift of all – his time.  I did not sleep of course and lay awake most of the night. I became very, very angry with my best friend. In the morning, I wrote him a note telling him that he was no longer my best friend. That I would cut out his lying tongue if he ever told me he loved me again and I called him a bastard from hell.  I also defaced a gift he had given me. I wrote a note because I did not want Samuel to hear anything that would upset him. I did not receive a note back but there was a lot of shouting, along with the suggestion that perhaps the police should be called so I walked away from the house without saying a word to prevent Samuel from hearing any more. After an hour it became clear that I shouldn’t be walking around outside or driving so I came home and climbed into bed. I couldn't understand my best friend's indifference towards me. I may not be a very clever woman, but I do know what love is. Whenever my best friend had been troubled in the past I would wrap my arms around him and assure him that whatever needed to happen to make him happy was what we would do. I received no such assurance and no physical contact whatsoever - and the suggestion to call the Police - was it a crime to ask for help from your nearest and dearest now? It felt like my heart had broken into a million pieces so I called another friend on the phone and she came straight to the house and wrapped her arms around me. She took me out for a drive and we talked. She gave me the number of a Crisis Centre - I called and spoke to a Counsellor who advised me to make a doctor’s appointment ASAP. She also advised me to fix the problem – I needed help and even if I had to pay someone to live in for a while to help me then that is what I should do. Once home again I climbed back into bed and stayed there all weekend (with Samuel playing on the bed beside me for most of the time, bless him) until the Tuesday morning when I saw a doctor. Apparently I had something called Labrynthitis and I was given tablets and told to drink lots of water. The doctor seemed to think the cause was my current extreme stress and the fact that I had not been taking care of myself in general for so long.

Two weeks on, I do feel much better physically. I have been drinking at least a litre and a half of water a day, making smoothies and soup, removed all tea and coffee and only drink wine at weekends. The strength in my arms is back and I no longer feel like I am going to fall over every time I turn my head. My headaches are still there but nowhere near as bad as they had been.   

I have advertised for help but have not received any interest as yet. Facing the next five months alone is like staring down the barrel of a shotgun. I asked for help from the person I considered to be my best friend but no help was offered so I took a chance and reached out to someone else who was there for me in every way. A lesson learnt – maybe he had never been my best friend? Maybe he would never give me the most precious of all gifts - his time? I had aleady gifted my time to him a long time ago but I refuse to regret that. It doesn’t matter – I just have to get through this next five months before I move to Scotland. Once Samuel gets help, I will automatically get help at the same time. I have to concentrate on getting myself well again and on my boy – nothing and no one else matters.

It hurts though – as much as the headaches hurt – but there is no tablet for heartbreak. Time, I am told is the only cure. This seems quite ironic to me – I had asked for time and been refused which led to heartbreak, the only cure for which is time ……. I hear laughter from somewhere in my head but I guess that is better than hearing crying, right?        Lou

 

SELF ACKNOWLEDGEMENT AND ACCEPTANCCE

"You yourself, as much as anyone in the entire universe, deserve your love and affections”

I found this quote on an ‘inspiring Buddha quotes’ website but there seems to be some argument about whether or not this is an actual Buddha quote. I don’t want to start a war so can we just agree that for the sake of this Blog I am going with it. OK?

As I wrote in my last Blog, I have recently returned from the Autism Treatment Center of America. Yes - my last blog is all about the heartbreak I felt when my best friend let me down. However - maybe in letting me down he was just taking care of himself? (I would like to think I learned something from the beautiful people!). 

We have a partnership, my best friend and I. It was agreed that I would stay at home with Samuel until he attended school. However, before school started we received the autism diagnoses and again we sat down and it was agreed between us that I would stay at home with Samuel for the long term future. Mark would provide the income and I would provide the care. Samuel started school, even though I was needed to be on call for most of the time so was definitely unemployable, and in spite of all that is lacking for Samuel on the Island, I had time to research and we found our path off Island while still living here. Yes, I struggled with it but it was definitely working - there was a balance there (a wobbly one but it was there). Fast forward five years and we have to take Samuel out of school - balance gone - totally tipped off the scale. I have spoken to a few good friends these past two weeks and all have said that they were waiting for this day to come - they all believed it was too much for any one person to do on their own and of course they were right. I was losing the fight and waving my white flag. 

Self-acknowledgement - I am not super woman and I can't do it all alone. I need more than a couple of trips away with girlfriends every year. I need daily time to care for myself. Self-acceptance - I believe I am entitled to this and it is OK for me to need and want it.

Question - whose job is it to get what I want and need for myself? Who is responsible for my happiness? My best friend or myself?

Maybe my best friend does not want to stop working to help me at home, even if it is only for a short period of time. He is entitled to want to continue working. He is responsible for his own happiness as I am responsible for mine.

The stimulus was that I asked for help and it was refused - my belief was that it was refused because my best friend did not care for or love me. My response was anger. However, if my belief had been that my request for help was refused because my best friend was taking care of himself in the best way he knew how, maybe I could have avoided the angry response.

It is clear that balance must be restored - it definitely will be when we move to Scotland. How to restore the balance in the meantime?

I may be wrong but I believe the stimulus of Samuel having to be removed from school put too much pressure on me and I believe that it IS too big a pressure on me. My action was to ask for help - maybe my action should have been to advertise for hired help much earlier. Rather than asking my best friend to restore the balance himself, by leaving his tempoarary employment, I should simply have sought an agreement between ourselves that we required help and the only way to get it would be to hire someone.  

It looks likely that I will be unable to find hired help to cover these five months and with Mark working, I find myself in the same position so what changes can I make to help myself?

I am going to wake up every morning and take care of myself as well as Samuel. I remove all responsibility of Samuel's education from my shoulders. I am his Mother. Samuel's education will get back on track in five months’ time. This next five months will be about enjoying this precious time I have with my beautiful boy and I refuse to put any more pressure on myself or Samuel. It will not be easy but by loving myself and accepting my limitations I believe I can do it. As for Son-Rise, again as I am on my own, I will do it when I can and I totally love myself for trying every day and accept there will be days when I cannot do it. 

If people think I am wrong in loving myself as much as I love others then that is their belief - not mine. When people ask, 'how is the home schooling going, Lou?’, rather than my sarcastic response of, 'fabulous, thanks, he is ready for his GCSE in Geography!', I will answer truthfully. 'I am not home schooling Samuel - actually - we are just enjoying our time together before we move to another school in September'.  

Just this morning, Samuel reminded me who I am and what my responsibilities are.  We were playing one of his favourite games - In the Night Garden Musical Chairs (coasters are the chairs and his figurines from In the Night Garden are the players). I am always in charge of starting and stopping the music and encouraging the players to dance with more energy, excitement and enthusiasm (the 3 'e's' for those in the know!). Samuel set it all up and then turned to me and said, "DJ Mum - HIT IT!"

Don't misunderstand me. I am still feeling heartbroken, however I have reminded myself that it is my heart and my responsibility alone to care for it.  DJ Mum over and out for now ........

*For more information on Stimulus / Belief / Response and the 3 'e's' please visit website for Autism Treatment Center of America®

  Lou 

BEING RUSSELL

Post incomplete - more to follow.

Disney Pixar Movie 'Up' character named Russell

Russell Toy (whose Face I have to imitate in order to be 'Russell')