ASD

Cyril – a chance encounter

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I have seen Cyril many times over the last number of years. Driven past him, him walking purposefully to somewhere. Or pushing a bike. And always with a few plastic bags in his hands or hanging from the handlebars. The look of a homeless man. Dirty clothes, worn shoes and a big beard. But I’ve never met him. Until recently.

My Tuesday Cregagh Glen walk was much later  (because I’m trying to get this book written  – you know, the one we all have) and there were lots more people up and down the glen at 11.30am than there are at 8.30am. At the bottom, on the way down, I met Cyril. We had a conversation about how long the Glen has been ‘renovated’, the fact that I’m from Essex (and wasn’t Brentwood famous? Yes, but for all the wrong reasons!) and that I’d first met my Glenravel husband at Gatwick airport en route to Jamaica, before I went and lived there 26 years ago. And the fact that my son is on the Autism spectrum. It’s amazing how much of your life story you can share with a stranger in the space of 2 1/2 minutes.

And then, for the next 45 minutes, a patient Lacey at my feet, I listened to a man, self-diagnosed with Aspergers, retrieve from his phenomenal mind, fact upon fact, quote upon quote. He is Mr Ology. He has read it all. Quantum physics, natural healing, Northern Ireland’s heroes, scientists, authors, spirituality. As he spoke, non-stop, with brief cross-references to my Essex roots and my son with ASD, I was amazed at the holograpicuniversetalbotmemory that shone from behind his flickering eyelids as he read (I’m guessing here) from the memorized pages of books. He can quote page and line number of the information he is expounding. An amazing man, who will share his natural healing theories with you on the bench opposite the lifts at Forestside. He’ll even write down possible concoctions to heal your ailments, having himself partaken of his daily tonic before leaving his ‘home’. If you don’t catch him at Forestside, maybe your paths will cross on a walk in Botanic Park where he passes the time of day with tourists and lecturers and proudly shares the fact that his photo is all over the web.

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And sure enough, if you Google ‘Cyril of Botanic’ you will find out more from others who have met this fascinating character. My day was made undoubtedly richer by this chance encounter.

 

Three things

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Everyone is saying the same thing. And it’s true. ‘I can’t believe it’s nearly September!’ ‘Where has the summer gone?’ In fact, where has this year gone? It seems a blink away that the New Year turned and with it, for me, brought some hope and light. It’s probably a matter of days not weeks, and the shops will be filled with Christmas. Let’s not go there. Let’s BE in these moments of late summer sunshine.

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The school holidays always cause me to reflect on life – the pace at which we live as a family during term time and how tired that causes us to be. Tired in body, mind and soul. I have learnt (more or less) not to sign up for things (oops, just broke that one!) or make BIG decisions or start BIG projects during the summer. I just can’t follow through with the same level of energy and enthusiasm once term begins again. And then I feel deflated and defeated.

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I read a church hoarding recently that said: Live simply, speak kindly, love unconditionally. It stirred something in me and I’ve taken it to heart. These are short, wonderfully memorable phrases but extremely challenging. When I stop and think about how those words work out in my life, I’m only really in the starting blocks.

Live simply, speak kindly, love unconditionally

 

This past weekend K and E and I were camping with some friends, enjoying the sunshine and beauty of Tollymore Country Park. The boy spent two and a half days screen free without a bother. When you can make forts in the forest, play on a rope swing hanging from a tall tree, find more sticks for your collection, cover your face in soot so no-one can see you in the dark and swim in icy mountain rivers, then who needs screens? I love that simplicity. But life back home isn’t like that. Can’t be like that. All the time. A friend reminded me…we are sojourners in this space of beauty and simplicity. And what a joy and a privilege to be a sojourner. For those of you who know me well, you will know how much I appreciate the ‘seasons’ of life. The fact that most of our experiences, both joyful and painful, are temporary. Life ebbs and flows. That helps me to withstand the tough times and appreciate the easier times. To learn from the challenges and be a stronger person because of them. To enjoy the smooth seasons and share the peace of that with the people around me.

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I am journeying on a path now where there is more hope. As a family our hatches have been well and truly battoned down over the last year and a half, and caring for my ‘three’ has been paramount. Of course it always will be, but, I feel like my head is coming up and my fingers are unfurling again. I am wanting to find that place again where it’s not about me, it’s about others. Where my hands are open and stretched out. Where kind words and love are working their way outwards, beyond my front door. Welcome, new season.

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13 days

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Day 1: catch a cold

Day2: have dinner with friends – discover Cooneyites

Day 3: go to bed – cold horrible

Day 4: Dublin zoo with the boy – a first

Day 5: go blonde and short

Day 6: Mum and Dad arrive

Day 7: rain

Day 8: rain

Day 9: rain

Day 10: Andy Murray wins Wimbledon – hooray!!

Day 11: run very fast with the boy on the lawn at Mount Stewart

Day 12: drop off the boy at his friend’s and worry for 5 hours that everything is going ok

Day 13: play hide and seek with the boy in the ruins of Grey Abbey

 

So far, so wet and so wonderful.

 

Unmedicated days with the boy are up and down. He hides in his world of other places, found in the black hole of his tablet screen. My heart struggles between letting him be there and making him be present with us. The first option is so much easier. And so quiet. The second involves schedules, lists, bargaining, timers set, goals made, constant questions about the next screen time, arguments, chocolate, fridge raiding, movement, hyperactivity, requests for help, abandoned activities, tears and mediation.

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The summer break is always longed for by me. No rushing in the mornings, no packed lunches to make and no busy activity schedules. I love the quiet first thing in the day, the cup of tea, my garden bench (the one Katy and I sat on yesterday and it collapsed under us!), space to think and read and write. I relish and cherish these moments. They are precious. They set me up for the rest of the day, strengthen me, flood me with quiet energy and restore me. By the end of the day I feel emptied and at times struggling to find patience, but the sleepy ‘I love you’ from the boy softens my edges and reminds me that I am blessed to be his Mummy. No-one else got that job.

 

I struggle sometimes (often) to believe that I am doing that job well. I struggle sometimes (often) with the disappointment that our life isn’t screen free simplicity. I struggle sometimes (often) with how other people respond to Ethan. I struggle sometimes (often) with how I respond to Ethan.

 

But tomorrow morning, and the next, and the next, I will sit on my bench (the other one), with my tea and breathe in the stillness of the morning, the presence of Creator, ready for another day.

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Champion week

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This morning began with a coffee in one hand, a pen in the other and this beautiful gerbera as my table companion. Not quite a salubrious setting (Sainsbury’s car park), but with the sunshine warming me right through to the middle, this was the best start to my day. I was definitely IN the moment.

This week off work had been eagerly anticipated (extreme understatement!) and has lived up to every expectation. I have found a place of rest, peace, achieving and sharing and I feel all the better for it. Relaxed, revitalised, re-motivated. It’s amazing what a little space in life can do – it frees you to BE and to GROW and to THINK. The rhythm of life doesn’t allow for that too often. Well, not in my experience anyway. How do YOU make space to BE and GROW and THINK? Not just the bleary-eyed, morning, quiet space, but a more prolonged time of escape (a day or two)? I’d love to hear your experiences. And try a few of them.

I think I’m marvelling a bit at this feeling because it’s happened with family in tow and particularly the last two days shared just with Ethan. A boy without medication for 5 days. Non-stop chat, non-stop movie/video dialogues, non-stop moving, spinning, jumping and climbing. Happy and FULL of fun. Without argument he’s sat and done his holiday homework with his assistant (me) by his side, redirecting his deficit attention back to the task in hand. He’s a clever boy. I wish I could work things out like he does.

His week began with a judo masterclass alongside a group of other children with similar conditions/qualities. Hooray! He didn’t feel weird, awkward or different as he does for most of the rest of his life. The adult and youth coaches at this event were amazing (big shout out to Dromore Judo Academy). Their acceptance of and encouragement to every child was a joy to watch (through the tears). Where else could a 10 year old bring down a 13st giant? (Probably even bigger than that but I’m not good at guessing weight and I don’t want to offend!).

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Headlining the event were two champions. Commonwealth, Olympic and European: Ashley McKenzie and Danny Williams. And they were much more than JUDO champions. They were ‘drawing the best out of these kids and loving them’ kind of champions. Ashley is a 25 year old with ADHD who as a boy discovered  judo as a way to channel his energy (and get his Pokemon card back!) . He has overcome his own challenges and won Commonwealth gold for team GB in 2014. He is now another of Ethan’s heroes. Move over Will.i.am. Make room on the bench!!

So it’s been a champion week in more ways than one. I am still enjoying BEING in the moment and not thinking ahead to Monday morning, relishing every moment of this ‘at home’ solace.

The Ancient. The Simple.

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Over the past 25 years, Co. Donegal has claimed a big part of my heart. Whenever we head over the Foyle Bridge I always feel the stresses and strains of life shedding, my heart skips a beat and the words of appreciation begin. What is it about this part of the world that affects me so much? I’ve thought about it a lot these past few days and concluded that there are two main things.

The ancient and the simple.

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On Saturday morning when I stood again on Tullagh Beach I thought back to the last time I had sunk my feet into the same sand exactly a year ago. A LOT has happened for us since then, and most of it has been tough. But those giant waves have rolled onto that beach every day since and those craggy mountains haven’t moved. In fact way beyond this year, way beyond my lifetime and back into millennia that beauty has remained the same. Our life journey is bumpy and we have big things to face when we get home, but there is deep peace here in the ancient creation and the awesome presence of the ancient creator.

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Our daily walks have taken us past ancient peat ditches and land that has been farmed from way back. A mountain-ward glance and miles of dry stone walls can be seen built in times past by the weathered hands of sheep farmers. The white-washed walls of old stone cottages stand out against the green, their peat smoke trailing skywards.

There are only so many belongings that can be squeezed into our ‘ancient’ Citroen ZX, squeezed in between two children and the dog. The usual for us would be: food, clothes, books, board games, knitting, drawing/writing stuff and Whiskey. And that is very simply what makes up our days and nights. Walking, reading, writing, playing, eating and sleeping. Oh, and Whiskey-ing. Our days here are simple. All my lists are left behind. There is nothing I can do about them. There’s no internet! I am the most happy of Mummies! Facebook doesn’t whisper, ‘come check on me’ and all the things I feel the need to Google, can’t be! It’s so simple. And I realise how crowded I am by those things. They press in on me in their sneaky, cheeky ‘you need me’ kind of way, and I don’t like that. I like simple.

The kids have survived with no internet and no TV! Ethan has devoured a whole ‘adult’ dot-to-dot book (can I just clarify that’ adult’ means hundreds and hundreds of dots rather than inappropriate content!), Frisbee-ed his heart out and parkoured the sand dunes and rocks.

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They adopted three lost lambs and named them Jesse, Steve and Bee. Every day we would look out for them in our garden or a nearby field, until the farmer chaperoned them home.

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A road trip for Katy and I took us up through Mamore Gap with amazing views, pink sheep and some thoughtful moments at a shrine to St Eigney.

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Ethan’s biggest challenge this week has been the shower. ‘I can’t use that shower. It’s old. It’s dark. It’s different.’ His biggest joy? All of us sitting round the peat fire reading and dot-to-dotting.

Simple.

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No matter what…

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It’s not often that Ethan divulges any of his feelings, so when a rare moment happens, the rest of us take it all in. The other night it was Katy who overheard a conversation between Ethan and one of his friends, in the car on the way home from the school quiz night.

Ethan and three of his mates from school had come back to our home, raked around, had penssomething to eat (brain food), made team posters and practised some quick-fire rounds before we headed up the hill, back to school. It always does my heart good to see Ethan with this particular group of three friends. They are such lovely boys: funny, loud, quiet, good-mannered and above all else (in my books anyway) KIND. (And they eat whatever I cook them!) They handle Ethan with acceptance, understanding, honesty and patience.

As the evening went on, I could sense Ethan experiencing sensory overload as he began to excuse himself more frequently from the hall to get some space. The boys assured me, ‘he’ll be back in a minute’. This told me that they KNOW him. They KNOW that he can’t cope for 2 hours in a hall with 70 other people, bright lights, music, chat, time restraints for questions etc. They KNOW that he needs a break. No-one went after him and when he returned there were no questions, just back to business.

Jelly-Beans-1KIN-JEL-JEBThey argued about answers, gave way to each other, admitted graciously when they got it wrong and bigged up each other when they got it right. We came somewhere near the bottom of the leader board, but they got prizes for being the only team with posters, and they were happy. At the end of the night there were hugs and high fives, plenty of laughter and the energy of  fizzy drinks and jelly beans.

But the conversation on the way home was both a little sad and heart-warming. The boys were talking about the quiz and their friends at other tables, when Ethan began to tell M how glad he was that M was Ethan’s friend. He began to tell him that outside of these 3 boys, at school he doesn’t have any real friends. He feels the others don’t like him, don’t include him, think he’s weird.

E: They don’t like me.

M: They think you have issues. Problems. That you’re ‘psycho’.  (Hopefully that’s an expression for ‘a little different from what’s normally expected’.)

E: So why are you my friend then?

M: I don’t think they’re right. I like you the way you are.  I’ll always be your friend, no matter what happens.

Between the tears that Katy and I shared as she recounted this to me, we determined to do our best together to help Ethan with these three friendships. To create opportunities more often for him to get together with the ‘Thunder Knights’ and for him to feel and appreciate in his own way, the love and acceptance that they give to him.

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Nerf Wars

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This past week has been mid-term break and a mixture of calm and storm. The boy was at a Lego camp each day for four hours. He loved it! He came home every day with a new mini-figure and a clay creation (in various states of squashedness). Could he tell us the names of any of his new friends at camp? No. Could he give us details of any of the teacher-led constructions he made? No. The only piece of willingly offered information was that on the last day, they played Nerf Wars! And he had scars to prove it.

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On Thursday night we had our own version of Nerf Wars here in the house. He had had a blast of an evening at his ASD youth club, playing hockey with Adam Keefe, Captain of the Belfast Giants ice hockey team. When he got home, his sister was in the final minutes of a movie she was enjoying and Ethan decided that if she was watching that, he could use his Kindle. At this moment I made the WRONG decision. I put myself in the battle frontline and said NO! It was bedtime. It was 9.30pm and it was bedtime.

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The bedtime routine for Ethan is very structured, involves me being there and I could see it being very late before anyone got to bed if I added in the struggle to get him off his Kindle. So, NO. No Kindle.

The battle began. Doors slammed, words spewed. ‘It’s not fair!’, ‘You hate me!’, ‘I hate you!’, ‘You don’t love me!’, ‘I don’t love you!’, ‘You’re mean!’. Missiles flew (mainly empty toilet roll holders I’d been saving to make seed pots!) and then the Nerf Gun was brought into play. Looking down the orange barrel I was filled with a mixture of nerves and bravery. I stood my ground. He’s not such a great shot. I survived. This lasted about 45 minutes and could have been avoided, maybe, if I’d said YES.

 

 

When Ethan has been to the height of his mountain, he spends time alone coming down the dinosaurother side and then is totally remorseful. ‘I can’t believe I said that to you. I’m so sorry. Did I hurt you? I love you.’ As I comforted a sobbing sister (‘All I want is some peace in this family and for everyone to stop shouting!’), Ethan’s remorse appeared in the form of a note, attached to the Nerf gun. ‘I’m sorry about the way I behaved. Can you forgive me? Here’s the Nerf gun so you can get me back.’ After a few words on ‘forgiveness is love, not revenge’, there were hugs. For Katy, the sobs subsided as we talked about the best way to love Ethan through his mountain-climbing. For Ethan, he had immediately moved on and away from the battle. Never to be mentioned again. Apart from by me in the next day consequence of NO KINDLE FOR A WHOLE DAY! Yes I bravely went there, stuck to it and survived with no threats from the Nerf.