Weekend Family Time

Hope comes to visit!

Usually, of a weekend, my granddaughter, Demi-Mae, comes to stay. My daughter, Hope, usually stays at home and has a bit of a break. She’s a lone parent and a young parent too. She’ll turn 20 years old this year.

I appreciate how important it is to have ‘me time’, especially as a lone parent. Been there, done it! There was never anyone to help look after my children with me and, throw the disabilities into the mix,  I was exhausted a lot of the time. So I really want to be there for Hope. Besides, I LOVE LOVE LOVE having Demi to stay. She’s an absolute delight and Rune, India and I shower her with affection and attention.

Watch Demi-Mae learning her colours through the ‘art’ of painting here…

Anyway…….last weekend, Hope suggested she come to stay too! It’s been a while since I had Hope, India, Rune and Demi all at home together.

 

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Cuddles at bedtime 🙂

 

 

 

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Hope, Rune and Demi-Mae

 

 

 

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My beautiful granddaughter asleep after a great day!

 

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Demi-Mae in her new dancing outfit.

Family time is so important, especially when family members have moved out of the home.  It’s a chance for siblings to get together which is really lovely, ( if they’re the type who get along with each other- and thankfully my children do). 🙂

 

 

I love to watch them all sitting on the sofa together, chatting. Or cooking together, or whatever. On Sunday, I was painting in my art room and Hope and India were laughing so hard at something on TV. It was great! Hope and India’s banter with each other is hilarious. Such different personalities and they adore each other. That makes me happy.

I’ve made the suggestion to everyone that we go for a pub lunch so this weekend so that Rune can have a game of pool. He does really, really well! I didn’t even know he could hit the balls until later last year when we happened to stop for lunch and he saw the pool table and became interested. His dexterity was all over the place, bless his heart, but, seriously, the boy tried and it was beautiful to see. Watch him go for it here.

Love

Heidi xx

 

I’ll let you all know if that happens.

 

ABHYANGA MASSAGE COURSE

27th NOVEMBER 2017

I have just attended the Ayurvedic abhyanga marma point massage course in Ashvem, Goa. The course was run by the company Raso Vai and our teacher on this course was  Dr Anita D. Rawandale (B.A.M.S).

We started on 21st November and finished today, 27th. Just a week, three hours daily.

Because it was a very short course we only covered the basics of the Doshas.

‘The Three Doshas: Vata, Pitta, and Kapha. The doshas are biological energies found throughout the human body and mind. They govern all physical and mental processes and provide every living being with an individual blueprint for health and fulfillment.’

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I still have a long, long way to go to even part way understanding the doshas and being confident to diagnose a client who has come to me for ayurvedic massage therapy. The type of oil and heat of the oil used for this massage technique depends on what dominating dosha the client has. However, I really did enjoy learning the massage technique and I’m ready as ever to get practising on willing people, for a small charge. Right now, I’m still counting my strokes and having to think ahead to what position follows the last but, of course, in time I will just naturally flow.

I just LOVE giving the massage. It’s very meditative for me as well as relaxing for the person receiving. When I’m in the flow and one movement to the next is seamless, the body ceases to be skin, and it becomes a blank canvas, with me the artist flowing with my paintbrush. But the best part for me is knowing that I am helping to make someone feel amazing.

WHAT BROUGHT ME TO THIS STAGE IN MY LIFE?

Having been a carer for 27 years, I am registered with the carers association in my county. I am often sent emails with information on courses they run for carers and pamper days, that sort of thing. Around 10 or 11 years ago now, I attended a small break with the children to meet other disabled families. We shared, we cared and we also had the opportunity to receive some massage therapy. It wasn’t a huge session and I can’t even remember now how I even had the chance to attend at all. Maybe one, or all, of the other parents watched Rune and India for me.

What I do remember, however, is not only how lovely I felt but how grateful also for the time given to me. I really wanted to give like this to other carers and make people feel as lovely and relaxed as I did.

That one massage never left my memory and in 2011, I applied for a carers grant to receive massage therapy on a regular basis. I was granted 15 sessions! I couldn’t attend weekly as life with the twins wasn’t as predictable as that and I actually ended up only taking about half of those sessions. Reason being for that was, even though the massage therapist was a lovely woman, she didn’t stop talking throughout the session and answering her busy door! So that kind of put me off attending any more sessions with her but it certainly didn’t put me off wanting to realise my dream one day of becoming a massage therapist.

So, here I am. Combining my love of all things Indian and massage therapy.

Looking forward to the next course in four days time!

If you want to know about about the RasoVai courses and maybe attend one for yourself, then you can check them out there.


					

Moving Forward

What a fab four days I’ve just had!

Hope, my 19-year old daughter came to stay from Thursday to today ( Sunday) and I’ve just dropped her off to where she currently lives with her partner and baby girl.

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Hope and Demi

Relations between Hope and I have been pretty strained over the past three and half years and I’ve cried more tears of that girly than over almost anyone ever. So, I’m hoping things are starting to get slowly back on track. We’ll see. Baby steps and all that.

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Hope was raised with her two disabled siblings, India and Rune and to say that her life wasn’t easy would be a gross understatement. At times it was damn near diabolical and my heart has broken for her a million times.

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Hope, India, Rune and a storyteller at Guilfest 2004

As a lone parent for 17 years now, trying to juggle the needs of all my children has been very hard but this was made even more so by the fact that India and Rune ( and Rune still) presented with extremely challenging behaviour for many years due to their condition of Smith-Magenis Syndrome (SMS) and If I was to write about all that Hope has been through at the hands of SMS, this blog post would go on for hours. Hope has quite literally seen it all.

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Hope and Rune

She has witnessed an almost infinite amount of meltdowns, both inside the house and at every other place we ever visited and when I say meltdown, I mean full on, up to three hours non-stop. And let me tell ya’ folks, there ain’t no meltdown like an SMS meltdown. If it wasn’t Rune, it was India and vice versa and sometimes both at the same time!

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My gorgeous twins, India and Rune. Looks like butter wouldnt melt, right? !!!

So let me explain an SMS full blown meltdown.

Screaming, throwing every object that’s not stuck down, including heavy objects such as furniture and TV’s ( and if the TV isn’t being thrown, you can bet that another object is being thrown AT the TV), full on frenzy of ripping paper, clothes, punching, biting, kicking, scratching at their own faces, pulling hair, head banging, a complete inability to listen to reason and….and….so much more besides.

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During these times, Hope at aged four and upwards and ongoing, remained calm and at times was the spectator and at other times was the target. Oh yes, Hope has definitely been a target. I think what breaks my heart the most is the fact that I wasn’t able to go to her, to comfort her. All my mothering instincts wanted to take her in my arms when she was struck at and give her kisses, cuddles and attention. Just to tell her everything was going to be okay. But what I did instead was scream at her in an attempt to be heard above the noise and destruction that I would ‘be with her in a minute’, which of course I never was. So, Hope would simply retreat quietly to a place of safety and wait for the meltdowns to pass. And then she would witness me with my head in my hands in total despair, crying my eyes out. In short, Hope’s needs have largely been placed on the back burner for the whole of her life.

Life was so chaotic in our household and the unpredictability of the twins behaviour, coupled with the fact that Rune rarely slept a wink at night, meant that Hope could never invite friends for sleepovers. Heck, she could barely even invite friends to come into the house in the daytime! Rune couldn’t cope with visitors to the house and he couldn’t cope with going out a lot of the time, either.

I was determined to make it work out for Hope on her 12th birthday and so, for the first time since her 6th birthday, she had friends over for a get-together. It was going well and we pretty much all stuck to the garden as it was a sunny May afternoon. Rune was in his room upstairs. Then disaster struck. One of the mums came to collect her daughter and a couple of friends and she arrived at the front door just as `rune decided to make an appearance for the first time that afternoon. Said mum bent down to say hello to Rune and got punched square in the face for her efforts. She reeled back and started to cry. Hope and I were mortified! Rune went back upstairs and the mum grabbed the children in a hurry and left. That evening I phoned her to apologise again and she told me that her husband said that his daughter was no longer allowed around our house. I sank into a sort of hopeless depression after that incident. Just another one to add to the list. My poor Hopey Bear.

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Hope’s 12th Birthday Party.

Despite all of this, Hope really does love her siblings very much. She just needed some time away to do her own thing, go her own way and now, at age 19, she is the very proud mummy of a 21-month-old, adorable little girl who has all the strength of her beautiful mummy, a shock of blonde, curly hair and her mum’s blue eyes. She is adored!

 

I love my Hopey with all my heart and soul. I’m so, so proud of her for so many reasons, not least for her strength of character, for the way she copes so well with a demanding toddler, for her soft heart. Sometimes I think to myself, ‘if I could only turn the clocks back’, but no, that’s wrong. We are all on our own individual life journeys. Our experiences are there for a reason! Hope and I have learned so much from the past 17 years and I can’t imagine not having experienced that. My twins have taught me so much along the way and I’m eternally grateful to all of my beautiful babies for coming into my life and helping me to become the person I am today. Couldn’t have done it without you, kids.

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Beautiful Hope.

Love Heidi x

COLLEGE

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So, as you may already know by now, Rune moved into St. Josephs, a residential and day, independent, specialist school and college on Saturday 7th January 2017.

Rune has dealt with a real mixed bag of emotions during the past three weeks as brand new sets of boundaries have been put in place and familiar routines and behaviours have had to fall away. It’s safe to say that Rune has been pulled completely out of his comfort zone. And how remarkably well he’s coped with it!

In this post, I shall be writing about:

COLLEGE

 Rune has never particularly been a keen participant in the education system, preferring instead to stay at home with me. This is a theme which has continued from his first school days when he was about 5 years old.

His attendance at the various special schools he’s attended over the years have always been fraught with transition difficulties and behaviour once he was at school has been challenging, to say the least. I remember (and far from fondly) those treacherous journeys to school, all through primary education, when he would be having a major meltdown in the car. I tried sitting Rune in the back with one of his sisters but he would hit out at them and reach forward and pull mine and the passenger’s hair, take his seatbelt off and generally try to wreck the car. This would result in me driving with one hand on the steering wheel and one hand behind me trying to control him whilst I drove. My eyes were sporadically on the road and we had many near misses. The other option was to have Rune in the front with me and I did this to spare the girls. He would still be trying to wreck the car, pull the rear-view mirror off, fiercely wobble the gear stick, turn the radio on and off and pull every knob on the dash he could find, off. Taking his seatbelt off and punching at me whilst I drove were the norm. We would arrive at school in tears, exhausted and me feeling, every single day, that I just couldn’t cope with this anymore and that I desperately needed help. The lack of help we received is a whole different story.

Rune qualified for school transport and this worked well, sometimes. As he grew older he became more aggressive during his meltdowns and very often staff and children bore the brunt of his fists until eventually, Rune was banned from school transport. So, we tried taxis with his own escort. He would usually be having a full meltdown by the time they arrived and refused to get in the car. He usually wasn’t dressed either, with school uniforms having been either put in the toilet or thrown out of his bedroom window.

During the period between October 2013 and January 2015, Rune had no formal education whatsoever. You can read about this in another blog post coming soon.

Rune started at St. Josephs properly in February 2015. Due to the outstanding work that had been done with him by two wonderful and dedicated St. Josephs staff members for a period of 6 weeks in our home before he even stepped foot in the college proper, Rune could transition beautifully in a taxi each morning and then back home again after the school day. He still had his challenges at college and rarely actually attended the classroom, completing small bits of work in his own room instead, where he was of course supervised full time. But overall, given that Rune hadn’t spent anytime without me, nor attended school for 17 months, everyone involved with Rune was super impressed.  His progress was remarkable!

These smooth transitions carried on for a further 15 months and then suddenly, out of nowhere, in March 2016 Rune’s smooth transitions slowly, gradually, became a thing of the past. No one knew why and everyone was flummoxed.

First, there were the occasional half-hearted flips of the hand on the arm of the escort. This progressed to regular, full punches and total refusal to get in the taxi, both from home to school and vice versa. On many occasions, I would receive a phone call from St. Josephs asking me to come and collect him. I would drive the 17 miles there only to sit outside of his special room waiting for Rune to come out of his meltdown or shutdown mode. Often, we wouldn’t leave the college until gone 6 pm, nearly 3 hours after school finished. We were both mentally exhausted (and I would imagine for Rune, physically exhausted too) and after fighting our way through rush hour traffic, the last thing I felt like doing was cooking. So, menu plans went out of the window and we’d get some fish and chips in instead. Thank Goodness for Rune’s disability allowance.

Finally, Rune started to hit the taxi driver in the back of the head whilst he was driving. The wonderful driver, a beautiful, gentle Muslim man from Sri Lanka, finally had to hand in his notice as Rune’s taxi driver. Him and the equally as lovely Muslim, female escort just couldn’t work with Rune anymore and no one could blame them.

In a strange way, unbeknown to Rune, he was helping with the case I was building with the social services to apply for funding for him to become a resident at St. Josephs!

Rune attended college a grand total of seven times from early May to July and then they broke up for the summer holidays. Then he went ONCE in September and that was it until he moved in on 7th January.

It wouldn’t be fair for me to sit here and type that the huge periods of absences from college were completely down to Rune’s total refusal to get in the car or leave his room in the morning. He more than likely would have attended on some days but I was so tired. I had completely reached the end of my battery life. Physically, spiritually, mentally and in every other way, I was exhausted. You can read about my own journey through all the time span written about in this post, in another post.

So, yeah. Rune now has no choice but to attend college every day. If a learner is refusing to go down to college and as an absolute last resort, teaching staff will come up to the group home. But this isn’t encouraged, of course. I believe this has only happened with Rune once during the past month and that’s amazing, I think. He seems to have transitioned into that routine quite well and I’m sure that the other young men in the group have been a positive influence on Rune.

Rune no longer has his own special room as staff have started as they mean to go on which is getting him into the classroom every day, which is so great. He has certainly had his wobbles and has become violent on a few occasions and this is to be expected. Like I said, his whole world has been turned topsy-turvy and he’s just finding his feet with it all.

Having said that, Rune has had many very positive days and received a Student of the Week certificate last week!

Rune moved classroom this week. Now he’s attending consistently, daily, the staff have finally been able to assess his progress and they have discovered that he was functioning at a level higher than the other pupils in the class. So, Rune is now in a classroom with the other boys he lives with. He didn’t take the transition well and had a very bad day but we all know he will become used to the new routine in time. He will most certainly be challenged more educationally in that class and this is something which I think Rune may initially struggle with but again, I’m hoping the other guys in the group will prove to be a positive influence on Rune.

All in all, well done my beautiful boy.

Love

Heidi  xx

 

Moving Day!

So the past 3 weeks, since Rune left home and moved into St. Josephs, have gone extraordinarily quickly and much has happened in both our journeys since then.

 

Following a really hairy and unsure day on the Friday,Rune moved into St Josephs on Saturday 7th January 2017. He really surprised me in the morning, actually. I wondered if there would be many tears and last minute refusal to pack his bags, let alone leave the house, but no such thing happened. We took quite a while to pack his consoles, games and dvds in his bags. Not just because there are so many (!!!) but also because it was really important that Rune didn’t in any way feel rushed into anything. I occasionally helped him as well as leaving him alone to get on privately. Meanwhile, I packed his clothes in another suitcase in my bedroom.

 

A little later in the morning, I went into Rune’s room to find him fast asleep on his bed. So I covered him up and left him there and then realised that I too felt really tired. It wasn’t through lack of sleep.  I reckon it was more of an emotional reaction to the big build up and now, of course, the day was finally here.

 

Rune woke up and came to find me. He climbed onto my bed with me and we fell back to sleep again together, cuddling. It was just what we needed. Just me and my boy, holding onto each other and snuggling.

When we woke up, we loaded the car, got our last bits and pieces together and went on our way.  India was brilliant with helping carry Rune’s belongings to the car and despite feeling poorly the previous day, was really pleased that she felt so much better as she really didn’t want to miss Rune moving into his new home. They’re close, not just because they’re twins, or because they share the same rare genetic condition, but simply because they are both beautiful people who love and respect each other and who both are genuinely kind to one another. I’m very lucky to be their mum.

 

As we approached the gates of St Josephs and wound our way up the long driveway, Rune, once again, surprised me. with his calmness and seeming acceptance of the situation. The last time he had been here was in September last year some four months previously.

‘He’s holding it all in’, I thought. I had totally convinced myself that any time now, Smith Magenis Syndrome was going to make an explosive entrance. But no sign of SMS then or throughout the rest of the day.

 

We were met by Dan, group manager, at the door and together with a couple of other staff members, we all carried Rune’s luggage upstairs to the group. After introducing Rune to his new room and placing the bags in there, India and I had a cup of coffee whilst Rune got busy checking out the X-Box and hanging out with his mates.

 

Later in the afternoon, I unpacked Rune’s belongings and placed them around his room to give a more homely feel. I felt okay doing this, actually. I didn’t think I would, but I felt fine. I think it’s because this is happening without any resistance. We’re in alignment as it’s all a part of the bigger plan.

 

We hung out with Rune for the rest of the day in the group, just playing games, drinking coffee, chatting to staff and the other young learners. Then…..it was time to leave and say our goodbyes.

 

Rune again surprised me by reacting really positively to my announcing India and I were leaving and chose to come downstairs to see us off. Of course, there were lots of hugs but instead of Rune clinging onto me desperately and not allowing me to leave, he let me go through the dining room door to outside. He stood at the window which our car was parked in front of and that’s when the tears started. It was utterly heart breaking to see him rubbing his eyes and I knew the best thing to do for myself and him was just to drive away.

 

As India and I wound our way in the car along the stretch of the driveway leading us away from St. Josephs and away from our beautiful son and brother, I felt in shock! I just couldn’t quite grasp the fact that…well…that was that. Rune had left home! That feeling of ‘not quite rightness’ continued on into the evening. India and I had planned to go to the cinema together and then onto a meal but I suddenly became incredibly tired. Physically and emotionally, I was just so drained. The cinema was definitely off the menu tonight but I felt bad for India. She’d been looking forward to the evening so we decided to still go for the meal. Bless my beautiful India. She’s so sweet, understanding and supportive.

 

Wagamama is one of our favourite places to eat so we toodled off there and had a delicious early evening meal of Pad Thai noodles and coconut curry noodles.

 

For the rest of the evening, we just chilled on the sofa. I felt very weird and quite sad. I couldn’t settle to anything or make my mind up about what I wanted to do. Read, TV, write; I just couldn’t decide on a thing. I realised that I was best doing nothing and honouring the way I felt rather than purposely try to fill the gap. I needed to just, you know, BE.

 

Today was the day my son left home. I send you off my darling boy with all the love in my heart and am safe in the knowledge that you will shine as a young man and beyond. Your disability doesn’t define who you are. You have the strength inside of you to overcome your fears and whatever obstacles and challenges you will almost certainly face. But one day at a time. We must all just take things one day at a time. It’s all we can do. img_3137

 

Love you my darling.

Rune Nearly Doesn’t Move Out!

img_3144th January 2017

Rune’s final day at home before he left for St. Josephs, proved to be more challenging than I could ever have imagined. What’s more, it wasn’t even due to him! No, not Rune, but the finance department of the social services.

The Eleventh Hour!

All was going well on Friday. Rune seemed very happy playing games in his room and waiting for my parents to visit. We’d talked through the routine of the day and he was aware that following nanny and grandad leaving, we’d be doing a spot of packing. Not his consoles and dvds. That could wait until tomorrow morning. No, just his clothes. So, all was ticking along nicely, Rune was coping well and then at 12.30pm, I received a phone call which was to rock my afternoon.

St. Josephs informed me that unless they received confirmation of funding for Rune’s residential place at the college, he wasn’t going to be able to move in the next day!!!!!!

Okay, so the funding for Rune’s package of care was agreed on back in July last year. During the summer holidays, Rune’s social worker had notified St. Josephs that everything could go ahead as the funding was in place and so they immediately started work on recruiting the two staff needed for Rune to be able to move in.

Basically, in a nutshell, St. Joseph’s regularly requested the letter of confirmation from the Local Authority, and they got repeatedly ignored. This went on for over five months! Well, right up until (and beyond) the day before moving in day! I pretty much freaked out, to be honest, and phoned Rune’s social worker to find out what on earth was going on! She told me that neither she nor her manager could understand the holdup and advised me to get in touch with her managers, managers, managers, manager! Apparently, this top manager was the one who was supposed to be liaising with the finance department to get everything done and dusted. I phoned. She wasn’t in her office and no one knew how to get hold of her. What’s more, the minutes were fast ticking by.

The Aboriginal Way

 About a month or so earlier, a lovely friend of mine and my spiritual happiness councillor, told me about how the aboriginals sang their dreams into creation. I found this to be a wonderful way to help me calm when I felt panicked or sad about Rune leaving. I would sing about him being happy, making friends, enjoying himself and settling into his room. It’s a very beautiful thing to do and I can highly recommend it. It makes feel in touch with source energy and I know from somewhere deep inside me that I’m being listened to.

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Aboriginal Dreamtime Art

So, following my initial freak out, I decided to make like an aboriginal and sing our creation into being. And wow, it made me feel so much calmer. I still felt slightly sick at the thought of Rune being let down and the fall out of him not leaving, but at least I’d stopped having heart palpitations.

My parents arrived around 2 pm and I told them the news which worried my dad. Despite that, however, he was supportive and kept reassuring me that all would be well. Rune came downstairs and had a chat and a cuddle and relentlessly asked for a new game for his PS Vita, and dad and Tammy being who they are, gave him £10.

For me, though, really, I couldn’t relax. Inside I felt so bloody cross with the whole situation. The various people I spoke to at the social services offices that afternoon suddenly turned into grovelling brown nosers when I stated that on Monday morning, the complaints department would open up the office to find a strong email from me.

Good News

Around 4 pm, the cut off time, I received a call from St. Joes informing me that despite the fact the funding confirmation email still hadn’t been received from the local authority, they couldn’t bear to let Rune down and undo the transition work I had been helping him through since I broke the news to him of his move, on Boxing day. My parents and I were very relieved although the issue wasn’t fully resolved; St Josephs had sent an email to the LA that afternoon stating that although they would take Rune the next day as previously arranged, regrettably, if they still hadn’t received confirmation of the funding by Friday 13th January, Rune’s placement at the college would be terminated.

Letting Go

 It wasn’t the time to fret about the following week. I would get back on the case on Monday. For now, at least, Rune and I could continue our plans for the big day.

We ended up going out for a meal that evening to Wagamama, one of our favourite restaurants. We actually just went out only to get some P.J’s and underwear for Rune but then the idea came to me that I just wanted to sit with him, talk with him and spend one to one time with him. I knew that if we went home Rune would just go up to his room again. India had a bit of a cold ( again. More on those issues in another post) so she had stayed at home. I got in touch with her and told her of our plans and would she feel left out. India being India, of course, was very happy for Rune and me to spend time together.

Huge changes are about to happen in Rune’s life and all I want to do right now is hold him close and give him all my love. This will be our last night together in the same house for quite some while.