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.

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?

Waiting in the Empty

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Image from idpinthat.com

Marcus Buckingham notes that your strengths are not simply what you’re good at and your weaknesses are not simply what you’re bad at. You will have some activities in your life that you might even be pretty effective at doing, but they drain you… A weakness is any activity that leaves you feeling weaker after you do it. It doesn’t matter how good you are at it, or how much money you make doing it – if doing it drains you of energy, you’d be crazy to build your career around it. 

~ John Ortberg, ‘All the Places to Go’

Right. So I should give up this whole ‘being a mother’ thing? Actually, maybe I should give up the being ill thing. I know I’d love to give up the PTSD thing. That’d be great.

In plain English, what a load of bollocks. The rest of the book has been quite good, though, so maybe Ortberg is going somewhere with it. I’m just rather discouraged today, because I feel like whatever I do as a mother is never enough and this stupid illness prevents me from doing so much. I have one child who has anxiety about the fact that things change (bless his dear, serious, innocent face) and there’s no way I can negotiate that one, other than to repeatedly offer the same reassurance. Such is autism. Another child treats everywhere she goes as a litter bin, and seems to think it’s amusing. She’s a happy-go-lucky little soul, but there are limits to how much go-luckying a mother can take.

Then there’s the other daughter who, in teenage angst, actually walked out of the house yesterday and disappeared for several hours, to the point that I was driving around looking for her and trying not to imagine all the awful scenarios that play out in a mother’s mind. I can’t even tell myself that those sorts of horrible things ‘happen to other people’ because they have already happened to us. There is no magic cloak of protection. When I eventually saw her, she just seemed so small.

So today will be a day of praying, because sometimes sadness is a blessing in disguise. It makes us lean right into Him. And maybe that’s where we’re supposed to be, because God is always good – and that is the message of the gospel. Thank God.

18 Summers

There is a meme around the mommy blogosphere that says we have 18 summers with our children before they fly the nest. For the most part this is true. My son is 16. It occurs to me that I will get more than 18 summers with my dear boy, because with autism he will need our help for longer. In fact, we don’t know if he will ever be truly independent because of the nature of his disability. I know Frank and I will have to push for independence of some kind, perhaps supported housing, for Prince, who very much wants to be independent, because we’re not getting any younger and won’t be around forever. But still I reckon I have received not a youngster with tragic disabilities (which is what some people automatically think of any kind of disability) but a blessing in the form of an innately innocent, deep-thinking young man who by his very nature needs someone to take care of him. This is not a burden. This is a mama’s blessing.