On Autism, Family, Grief and Kindness

During the funeral for my mother-in-law last week, I made sure Prince stayed with me. I carefully explained exactly what would happen beforehand and although the girls went with my parents, Prince stayed by my side the whole time.

Prince is 17 years old and has autism. He goes to special school. He struggles with anxiety so was, of course, very worried about what the funeral would be like. I think he thought we’d all be wailing and moaning and falling over one another or something, because beforehand he was constantly asking me if it was ok that he was sad, but not very, very sad, and he was glad Grandma was not suffering any more (he didn’t word it like that but I think that’s what he meant). He also said, quite bluntly, that although he liked Grandma, he didn’t know her very well, so he wasn’t as sad as he would be if it was his other grandmother, whom he knows very well. Which is fair enough. I told him not to say that to anyone else, though!

To be honest, when we would take Grandma out (she lived in a lovely care home for the three years prior to her death) I was mostly thinking about how to manage her with her frailty and dementia (make sure she is not distressed or too tired, keep her upbeat and happy by talking to her and constantly reassuring her, even if I’ve already done exactly the same thing a dozen times or more), Prince and his autism (minimise anxiety, keep him passive), boisterous or bickering girls (make sure they’re not forgotten in the need to put Grandma and Prince’s needs first) and a husband who gets easily distracted and might not notice if his mum is about to topple over or something (keep an eye on him). This family time was lovely – my MIL was lovely – but could also be quite stressful, so encouraging anything other than quiet, non-anxious, absorbed-in-his-radios behaviour from Prince was never really the priority. I don’t mean to sound mean towards my husband. He had all the same things to deal with, along with my PTSD and CFS, so we have always had to look out for one another. My point is that I didn’t seek to encourage interaction between Prince and his grandma.

On the day of the funeral I made sure Prince was with me, to make sure he was ok. I didn’t want to risk my parents saying the wrong thing to him, however well-intentioned they may be. I sat in the pew first, followed by my son and then my husband. During his sister’s beautiful eulogy, Frank began to tear up and I saw him wiping his eyes and nose. I felt bad that I hadn’t sat in between them both, but I couldn’t move as that would distract from the eulogy. Then came my turn. I stood and walked to the front of the church and read a poem I had originally written after the death of Frank’s dad. As I came to sit back down, I deliberately sat in between Frank and Prince. I took Frank’s hand. He squeezed mine. The tears began to flow. I reached for the tissues and thanked God that I had kept it together until after my poem. Then, to my surprise, Prince took my hand in his. He didn’t say anything, but this little gesture from a young man for whom touch is anathema made me realise what a wonderful boy I have. That simple act of taking my hand meant so much to me that I can’t really describe it. You won’t know what that’s like unless you’re a parent of a child with autism yourself. Prince saw that mummy was sad and he wanted to make me feel better.

I love my boy. I love his innocence. You can take your neurotypical sons. I’m glad they have parents who love them. I’m glad they will have the chance to ‘succeed’ in life, to go to work and have a family of their own. But I wouldn’t change a hair on my boy’s head.

This is a large work I’ve called you into, but don’t be overwhelmed by it. It’s best to start small. Give a cool cup of water to someone who is thirsty, for instance. The smallest act of giving or receiving makes you a true apprentice. 

Matthew 10:42, The Message

I think my boy is a true apprentice, even if he doesn’t know it.

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Image from wikipedia ‘simple balloon’

 

My lovely boy has begun being more helpful around the home. When I praised him for it he replied, “I’m 17 now, Mummy, so I don’t find it as hard to be grown up as I did when I was younger.” Prince said this while clearing off the table ready for tea, having unloaded the dishwasher without even being asked and having picked up some litter off the floor which our naughty delightful Chip had casually discarded (she’s a s*d for doing that). Meanwhile, I felt like crying, because this boy, this young man, has been the subject of many a prayer, especially for his future. His anxiety, as well as the time it takes for him to process a situation, had led us to wonder if he will ever live independently, let alone support himself. Now we have a smidgen of hope. We’ll see.

It’s strange how that happens sometimes with autism. A child shows no sign of doing something that you would expect of a non-autistic child and then, all of a sudden, they can do it, as if by magic! Even if they’re several years beyond the age that their non-autistic peers did the same thing. For example, until he was five Prince had almost no voluntary speech; he just repeated what was said to him, very precisely, and often completely out of context. This is known as ‘echolalia’. All of a sudden, virtually overnight, he began speaking in proper, original sentences. The same happened with toilet training, wetting the bed, tying a knot and all sorts of other things over the years. We would try to explain, in very simple language, what behaviour was expected. We would carefully demonstrate, over and over. Prince seemed to understand (or not – he can have a noticeably blank expression), but would carry on regardless. Then one day he just did the thing correctly and that skill remained part of his repertoire.

Miracles can happen. Just love a child with autism. You’ll likely be tearing your hair out in frustration many times over the years, and one day something happens, like fitting a jigsaw piece into place. One day he realises that this particular jigsaw piece has been upside down the whole time, so he just flips it round and pushes it into place, and you feel the same awe as if he performed a miracle right in front of you.

How much more worthwhile is the celebration, the joy, in finding the one little lost sheep when you know the other 99 are safe in the fold?

“…what woman having ten silver coins, if she loses one of them, does not light a lamp, sweep the house, and search carefully until she finds it? When she has found it, she calls together her friends and neighbours, saying, “Rejoice with me, for I have found the coin that I had lost.”

Luke 15:8-9 (NRSVA)

Treasure in jars of clay, indeed!

Seven: Thoughts on Married Life

It’s been a little over seven years since I first met my husband. I was 32 then. How young that seems now! My dear Frank was a youthful 41. When I look back, when I consider the woman I was then it is almost like I’m remembering the life of someone else, so far have I come from that ill-used, halfling creature. It amazes me to think that Frank saw beyond all that jagged brokenness and, more than that, he loved me just for me. He rescued me. I was about breaking into a million sharp shards and this wonderful man didn’t run in the opposite direction when he found out my past, he didn’t even scarper when my then 10-year-old autistic and ADHD son attacked him when he babysat the kids for an evening, for the first time. Frank phoned me when I was in the middle of dance class and asked if I would come home. I confess I didn’t think it was all that bad and wanted to stay (single parenthood not giving me much opportunity for anything). Ten minutes later he called again and I realised that I needed to go home. His voice sounded polite, but strained. Here we go, I thought. I braced myself.

As I walked in the front door and saw Frank’s face, and then took in the fact that he was covered from head to toe in Vaseline and eczema cream, I knew for sure it was over. Who would willingly stay to become the step-father of a child who didn’t sleep, destroyed things and attacked you? Who would willingly desire to be the husband of someone as broken as me? Who could possibly think that we, the kids and I, were worth it? Also, at that point I had had not only the awful, abusive first marriage and the ramifications of that individual’s crimes, but a few months before had fallen for someone – a lovely Christian man – whom I thought felt the same only to find out he didn’t. Ouch. So I had wrapped my heart tightly inside me, to protect it. I had not let myself feel anything other than a moderate attraction to this new man, Frank, who stood before me as I stepped into the hall.

But the rejection never came. Instead, the very first thing he said was “you know that I love you, don’t you?” And I – well, how do I say this? – I began to unwrap the tight bindings of my heart. I can’t say he swept me off my feet or romanced me. Everyday life with two very little girls and a son with ASD meant that we stepped into (grim?) reality straight away. No time for all that lovey-dovey stuff. He stayed. And he loved. I grew to love him, and I also grew to love the ‘me’ that he saw – because I can tell you for sure that I did not even like myself, let alone love myself, and I didn’t see how anyone else could.

So I would like to thank God for answering prayers I never even uttered, and I would like to thank Frank. For being Frank. For being a man of God and a man of compassion and a man of so many other things that will remain unnumbered. Not a day goes by that I don’t tell him how much I love him. I am truly blessed! This post is for my husband. Thank you.

This Changes Everything

If a person really grasps the truths of the gospel and believes it, this changes everything. How can they ever be the same again? We are recipients of amazing grace! 

From Positively Powerless by L.L. Martin

This past week began with a very poorly little Chip who threw up all over her school bag and its contents and was then wiped out on the settee for a couple of days.

Yesterday, despite my best efforts to avoid catching it, I managed to throw up all over the mirror, the wall, the carpet, myself, the bathroom floor and my husband’s dressing gown. I had been lying in bed hoping it would go away and had not factored in the time it would take to jump out of bed, grab the nearest dressing gown, run along the hall, down three stairs, turn the corner, up two stairs and along the corridor to the bathroom. Hence the awful mess. I adore our big Victorian semi, but it has a few disadvantages. Not that I would change a thing. I love our higgledy piggledy house.

My dear, kind husband cleaned it all up while I climbed straight into the shower. Prince, in his adorably honest fashion, opened his bedroom door and imperiously demanded, “What on earth is going on?! It’s four o’clock in the morning!” You just can’t get the staff these days.

I felt awful so went back to bed with a bucket. Frank was supposed to be going to his cousin’s funeral yesterday, but instead he became my nurse and took over my usual role with great gusto. He even got Prince to walk to school, which is something of a miracle. Seriously. You’ve not met Prince. Think Sheldon from The Big Bang Theory, only with learning disabilities. Even the mannerisms are similar. Prince does not like having his routine disrupted o_O

I spent yesterday in bed and in pain all over my body. I think it’s related to the M.E., which is itself a neurological disorder – it’s like the pain nerves get switched on, despite there not being anything actually wrong. I’m just glad I don’t generally have pain. Lots of M.E./CFS sufferers do.

So today I am resting and reading Positively Powerless by Laura Martin. The words above struck me. How great is our God! Amazing grace. Hallelujah! When I am better I will write a review. Positively Powerless brings to light some very pertinent issues for the 21st century Church, which have never been addressed elsewhere, despite their importance. I highly recommend it. More on that later.

This is a bit of a higgledy piggledy post. Never mind. Be blessed, friends.

Marmite Wars (and Other News)

Tesco bans marmite from its shelves! The attention-grabbing headlines reflect a wider truth which is, funnily enough, exactly what any sane voter could see would happen. I voted ‘remain’ because to leave the European Union is likely to benefit the few at the expense of the many. There are some very undemocratic processes within the EU that need reform, but our departure throws out an infant blue whale with the proverbial bathwater. The pound depreciates. Food prices rise. No sugarsnaps*, Sherlock. More on this from the Financial Times:

https://www.ft.com/content/2c651be2-9228-11e6-8df8-d3778b55a923

*’sugarsnaps’: my word of choice. Polite yetersnappy.

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In other news, I continue to use the KonMari method of decluttering, along with the Sidetracked Home Executives method of home management. The household is becoming more organised and orderly, albeit at a slower pace than I would like due to my health (and certain messy members of the family who shall remain nameless). My lovely Fluff, now aged 13, has really taken the ideas on board and has been very helpful. I’m so proud of her. Her attitude to everything has changed for the better lately. Hurrah!

I’ve begun studying Data Analysis again with the Open University. It’s going well but I need to be extremely careful to stick to a schedule of study, housework and rest because if I don’t it will all fall apart (again).

My dear mother-in-law was poorly and ended up in hospital for a week but is back at the care home now. I think the dementia has progressed, but she is very well looked after. I’m going to crochet a cuddly animal for her, because often she needs to be comforted in a very basic way and what better than something to snuggle with? I’ve been crocheting away like mad, lately, ready for Christmas as money is a bit tighter this year (and because when I finally decluttered my craft stuff I found a huge stash of yarn). I’ve even been to a sewing class where I’m learning to use a sewing machine 😀

Prince has had a resurgence of the pain that made him stay off school for six months (from December ’15 to June ’16), so we have an appointment at the pain clinic for the beginning of next month. He asked me yesterday if I was praying for him. ‘Of course!’ was my reply but I was so touched that he thought to ask. Please pray, if you’re so inclined, that we get to the bottom of it quickly? His life is hard enough with the inevitable, near-constant anxiety that autism brings. 

How’s life where you are? I’d love to know.

Reblog: #worldwithoutdowns: A Challenge for Christians

My first thought when I heard about the new, safer pre-natal test for Downs was ‘thank God there’s no test for autism!’ Abortion of children with Downs is eugenics by the back door, in my opinion. I know there will be those who disagree. But I also know that we are firmly instructed ‘do NOT judge’ as well as ‘love one another, as I have loved you’ and the way He has loved is without boundaries. None of us is worthy of Christ’s love. So what do we do? I believe this post from Included by Grace makes some very pertinent points.

Then people began to bring babies to [Jesus] so that he could put his hands on them. But when the disciples noticed it, they frowned on them. But Jesus called them to him, and said, “You must let little children come to me, and you must never prevent their coming. The kingdom of God belongs to little children like these. I tell you, the man who will not accept the kingdom of God like a little child will never get into it at all.”

Luke 18:16-17 (Phillips)

NB I have not seen Sally Philips’ BBC documentary as we don’t have a television license. I did catch her on BBC Radio 4 the other morning, speaking about the programme, the Downs community, the current very high rate of abortion for those diagnosed with Downs before birth, and about her son, whom she clearly values as much as I do my own dear boy.

includedbygrace

I was going to write a ranty post about the implications of genetic screening (and it may still work out that way) but in the middle of composing it in my head, I got a message from a friend who is isolated from her church, her family and community because she is a single mother with a severely autistic child. Many Christians would talk about the value of life and speak up against abortion, but then sit in churches that exclude these ‘valuable lives’ because they are so inflexible and inaccessible to them. Changing things for the few is met with horror at the mere thought. So families and adults with disabilities are left out, excluded, not welcome.

Watch Sally Phillips documentary “World Without Downs”

I wanted to join in the throng of ‘all life is sacred’ with the many that have responded to Sally Phillip’s BBC documentary that I…

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“Be Kind.”

 

My son, who has autism, is not able to follow stories, not very much. Watching his little sister in her yearly Christmas pantomime last year 15-year-old Prince was worried when, dressed as Maid Marian, she ran across the stage yelling, “Who shot that arrow at me? You nearly took my eye out!” Everyone else laughed but he leaned in to me and whispered, “Mummy, is Chip OK?” I told him she was just pretending and relief flooded his face. “I thought someone hurt her!” I told him it was just a joke. 

Parables, such as those consistently used by Jesus, are utterly baffling to our dear boy. Prince has to have even common expressions carefully explained. Of necessity, then, the gospel has been reduced – and reduced some more – to two words:

be kind.

This morning I read Ann Voskamp’s blog post, immediately followed by my daily bible chapters. As I read both I was struck again how simple the Good News actually is.

Truly I tell you… whatever you loose on earth will be loosed in heaven.

Matthew 18:18 (NRSVA)

Why don’t we let loose kindness – see what happens?

Reblog: Autism Parents and the Church: Sabbath

 

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My own health is the reason we’re not going to church today, although the girls will later take part in the St. George’s Day parade at the local C. of E. I understand the importance of Sabbath rest. Rest is, in fact, integral to my own recovery. When I was a single mother of three, my son’s autism meant I rarely rested, and church was definitely not restful or restorative! But I had such a yearning for God that I couldn’t not go. The friends I made through Celebrate Recovery, the Jesus-focussed programme and the beautiful fellowship all changed my life.

This is an excellent post from The Left Hand of Ehud blog (very good blog, do pop over there and have a read).

The Left Hand of Ehud: Matt's Bible Blog

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Sometimes, things get too much.

You’ve run out of tolerance for being yelled at or hit. Or you’re fed up of arguing with doctors, with schools, with random passers-by. Or you’re sick of the staring and the tutting and the whispered comments. Or you’re tired of the guilt and the stress and the routine, you’re tired of being tired.

There are so many autism parents who, for a thousand and one reasons, don’t get to go to church. And that can mean that each day becomes just like the last; seven days you labour with no end in sight. You don’t get to stop, to reflect, to press pause and breathe. You don’t get to rest your soul, to feed your spirit, to lie down in those symbolic green pastures, to drink from those metaphorical still waters.

You don’t get to Sabbath.

(Sometimes you don’t get to Sabbath…

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The Very Thought of You

Our dear boy has been poorly. He spent a week in hospital and is now home and feeling very sorry for himself. We are assured it’s nothing serious, but how do you explain that to a young man with autism who can’t understand why he is in pain? Yet these things do bring us closer to one another, and thus closer to God, because in each small (or large) act of patience or kindness there is an eternity of love: there’s God. Our friends who live in the city (where the hospital is) welcomed me into their home last week for as long as I needed it. I recalled the words of Jesus to His disciples:

“We are intimately linked in this harvest work. Anyone who accepts what you do, accepts me… Accepting someone’s help is as good as giving someone help… It’s best to start small. Give a cool cup of water to someone who is thirsty, for instance. The smallest act of giving or receiving makes you a true apprentice. You won’t miss out on a thing.”

extract from Matthew 10:40-42, The Message

So I just want to say thank you, especially to Frank, who took on the role of mummy and daddy while Prince was in hospital and I had to be away from home. Frank is currently in London on business and I miss him. For six years he has been my best friend, my lover, my confidant and I love him more and more (plus, I don’t know how he puts up with me). So this is for him (and Him):

https://m.youtube.com/?hl=en-GB&gl=GB#/watch?v=cr4ncMR5EVQ

 

‘Mummy, Sometimes I Feel Like Killing Myself’

Frank is away this week in London on business. It’s been a surreal time. I miss him terribly. It’s the longest we’ve ever been apart, but I’m making the most of the time with just me and the children. Also, it has proved the EMDR is working because I am no longer panicking and paranoid when I’m alone in the house. I am coping. Yay!

Anyway, yesterday evening, Fluff was at gymnastics. Chip had lost this privilege earlier in the week through bad behaviour so at 6 o’clock she and I were eating soup with Prince, all nice and calm, like.

“Mummy,” Prince said matter-of-factly while munching toast, “sometimes I feel like I want to kill myself.”

If your child said this to you at the dinner table, how would you react? 

I took it in my stride… we are used to brutal honesty in this house, and we are used to a young man who often says things that are completely unexpected, especially at the dinner table for some reason! He may have autism and learning disabilities, but he’s a very deep thinker (can’t think where he gets that from, can you?). So, despite the seemingly terrible tea time conversation-starter in front of his 9-year-old sister, I asked dear Prince what made him say that. I wasn’t shocked or horrified or… anything, really. I just wanted to understand what he was thinking and why.

“Because sometimes,” Prince replied, “the world just seems like such a horrible place full of horrible things and I don’t want to live in a world like that.”

Bless his beautiful black-and-white thinking. He doesn’t have the social skills to recognise why saying exactly what you think might be socially unacceptable. e.g. when we were in the supermarket and he said, horrified (and within earshot), “Mummy, why does that lady stink?!”

So we had a conversation about a world full of sin and sorrow, and a caring, loving God whose heart was breaking seeing all the misery. We talked about how He sent His Son, who willingly gave Himself to be killed in the most horrible way, to experience for Himself the very worst suffering, so that the bridge between us and God could be mended. Eventually I promised to get him a notebook so that he can write down all of his feelings and show them to his counsellor, whom he sees monthly. Then the conversation took a slightly different turn.

“I’m not sure I want to be a Christian, Mummy.” He said, “I don’t want to be like you and Daddy. It’s too hard. I just want to be able to pray sometimes.”

We talked about love and what happens when God is your friend and constant companion. We talked about how love is the only thing to make a difference in the world, how love is the only thing worth living for, and how God is love. These conversations are always challenging, because Prince’s vocabulary is limited and his comprehension is very literal. I have to keep my language very simple and straightforward, and this is quite difficult!

I thanked God for the opportunity to talk to my son about Jesus on his terms. Church and Sunday School are pitched way over Prince’s head, so he’s never going to learn from there, even if he does recognise that church people are generally kind and friendly to one another. We’ve had some conversations around the dinner table, but that one was a corker.

What about you? Have you ever had stunning questions from your offspring? How have you dealt with it?