Settling Into a New Way of Being

So, what has the past month of January been like for me?

Firstly, I’ve realised that my belief that my role as a carer would be pretty much obsolete once Rune had moved out, was quite ridiculous! Yes, I have a little more actual time alone and India is at school Monday to Friday but my role hasn’t stopped at all. I’ve still needed to attend countless meetings and of course, India is home from Friday afternoon to Monday morning and school holidays. And being a teen with SMS, albeit very high functioning, she still has her issues which often times require careful handling.

img_2963
India and I took a lovely sunset walk over Ashdown Forest.

 

The first few days after Rune left were a bit of a whirlwind. I just felt like I wanted to do everything that I couldn’t do with Rune at home. And I wanted to do it NOW! I saw grown ups and had time to myself and that lasted two days. By the third day I really started to miss Rune and by the second week, I was ready to collect him, bring him home again and apologise for making the poor boy leave home and to tell him it had all been a terrible mistake.

That second week was very hard. Listening to Rune sobbing uncontrollably on the phone for over half an hour each evening that he misses me and India and he just wants to come again…..wowzers. Not good. But we both got through it, we visited him on the Sundays and the weekday phone calls became easier.

I resisted the urge to go out in the evenings for a cuppa somewhere or attend a meetup group as I was so focused on my upcoming trip to India with Jayne and needed to save every penny! Oh actually, I did go out one Thursday evening to attend a shamanic journeying evening with someone lovely I know. It was his first time at holding the circle and I really wanted to support him.

Other than that, I’ve been trying my hand at pastel portrait painting, clearing up the garden, decorating the bathroom upstairs, upcycling furniture, planning my India trip, painting mannequins and generally keeping myself very busy! I plan to write a post with pictures very soon so look out for it.

img_2915
Mannequin Mandala Painting.

 

India and I had a lovely walk one Saturday afternoon to the Ashdown Forest. It was sunny and cold and we walked for a good hour, or so.

On that first Monday evening, I attended a small meeting in a pub to exchange ideas and tips for running a small home business. I loved it and kept having to bring myself into the present moment as I found myself drifting off into the land of disbelief that I was actually out of the house, after dark and talking to real life grown ups without anybody I gave birth to in the vicinity.

On Tuesday I decided to visit hairdressers. I wasn’t going for a major new style, just a trim and neaten up. My usual go to hair cutting sessions have been from home. By me. And I’m no hairdresser! A wonderful YouTube video tutorial showed me how to give myself layers. Basically, throw your head forward, make a ponytail on top of your head and cut the bottom of the ponytail. It worked okay I suppose. Not amazing but it did the job and when one is a full-time carer and chief bum wiper, you take what you can get. So, to be sitting in a chair of an actual real life hairdressers with someone who knew what they were doing fixing my hair, I felt like I’d won the hairdressing lottery.

On my way back to the car, I went passed a tiny Italian restaurant. During the seven years I’ve lived in this gorgeous little town I’ve walked past that restaurant many, many times and each time declared to myself that I was going to go in there for a meal one day. I think I should point out here that my never having eaten there was nothing to do with me being a carer. The children and I have enjoyed many meals out at various places, our favourite being Wagamama. Anyway, I walked in and chose a little table on my own and enjoyed a vegetarian meal with a glass of coke. Italian music was playing and there were beautiful paintings on the walls. This was a little slice of heaven and I dreamed of how I was going to travel to Italy one day. I’ve been thinking about a  painting holiday…….

In the evening I realised that I was free to step out of the house if I so chose to. So I did! I went to the cinema and saw Passengers, which was brilliant. For so many years films have come and gone and every time I miss them. My cinema experiences have been all about taking Rune to see his U certificates. We used to sit in the back row together and then a couple of years ago he suddenly announced that he would prefer to sit in the very front row. I made it through a couple of films like that but couldn’t do anymore. We were too close to the screen and whilst he may have been enjoying the sensory overload, I wasn’t. I felt like my ears would implode and I would damage my retinas. No one ever sits in the front row, right? Every time Rune did, which was every time he visited the cinema, which is a lot, he is the only one on the front row. He likes it like that! More room for his teddies and crisps!

So, in order for Rune to be supervised, he would sit at the front and I would sit right at the back of the theatre but this just made me look like I was an adult visiting the cinema alone to watch a kids movie. So that’s when the shift happened of I never having to suffer a U certificate movie again. I say suffer but that’s not really fair. Mostly, kids movies are really fab and some are downright hilarious, but you have to understand. I’ve been watching them for 16 years now and I was longing to see a grown up film!

Anyway, I would buy our tickets ( I went in free as a carer), then settle Rune in on the front row with his snacks, drinks and whatever plushies he’d chosen to accompany him that day, and I ( and India too sometimes) would go upstairs to the cafe and have a hot drink and a chat.

After a while of this, I got really brave and started taking India to Hollywood Bowl which was just in the building just next door to the cinema, all within the same complex. We would only play on the arcade machines for a while and I would check back in on Rune but it was enough. India and I were actually enjoying quality time together. On the days I took Rune to the cinema when India was at school, I would sit in the cafe alone, reading a book or surfing the net. It was blissful but still, a bit lonely.

I’d really feel for India though. There were films that she wanted to see but not alone and I couldn’t go with her as I had no one to look after Rune. So they would pass her by, just as my films did with me. One day I decided to take a leap and take India to see a film whilst Rune was watching his. We chose the timings to coincide with one another but it wasn’t exact and that really worried me. Our film started about 20 minutes later than Runes and went on for longer and it turned out that he would have to wait for us for 35 minutes after his film had finished. I gave him strict instructions to go to the cafe upstairs and sit and wait with his PS Vita and to NOT MOVE FROM HIS SEAT UNTIL WE GOT THERE.

India and I enjoyed our film despite the fact that I was regularly checking the time. Panic set in the moment I knew Rune’s film had finished. I was stuck, though! I desperately wanted to go and check on him but I couldn’t leave India. Well, I could leave her, but I mean I didn’t want to. It was the first film we’d seen together in years and to walk out in the last half hour and just leave her to it, would’ve been desperately unfair.

On the other hand, though, I was having a slight heart attack worrying about whether Rune had gone to the cafe as per instruction and it was then that I decided I was just never going to do this again. It was too much of a risk.

But situations like these are typical for a single parent/carer. Caught between your kids all the time, having to watch your more able children fend for themselves, their needs placed on the back burner. It’s all heartbreaking but unfortunately, unavoidable.

Our film finished and boy, as soon as those credits started rolling, I was flying down those steps like my arse was on fire, throwing a quick instruction to India over my shoulder to meet me in the cafe. I hared up the staircase to Starbucks and there he was! My Runey Bear, sitting at a table, perfectly fine and playing on his PS Vita. I hugged that boy.

Never again!

COLLEGE

img_3128

 

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.

blog-image-abo-1
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.