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.

Up

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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.

Flawed by Design?

‘Doing it all’ isn’t biblical. The world says we must do it all… This means abandoning the never ending need to please. The belief that we can and should do it all ourselves is a lie that haunts us. 

…God made me with limitations on purpose. Having a limited capacity is not a flaw in my character; it is by glorious design and for an incredible purpose: to realise my need for Him.

~ from Breaking Busy by Alli Worthington

“Nobody… sews a patch of unshrunken cloth onto an old coat. If he does, the new patch tears away from the old and the hole is worse than ever. And nobody puts new wine into old wineskins. If he does, the new wine bursts the skins, the wine is spilt and the skins are ruined…” 

Mark 2:21,22 (Phillips)

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.

*******

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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