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.

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.

Thankful

I drove to get her at midday. She was there, waiting with a smile.

“Someone’s just gone to get me coat.” My mother-in-law said, in her strong local accent. I was glad the staff had remembered that we were taking her out. Usually I have to find her outdoor clothes. Not that I mind; she’s always so surprised and so glad to see us that any service we offer seems but small.

They say Mothers’ Day is the busiest day of the year for restaurants. I think it’s the busiest day of the year for care homes, too. I’d never seen so many visitors! The sight made me smile, yet I was more than a little sad for those whose visitors only turned up because it was a special occasion. Sadder still for those with no visitors at all. Is this what these elderly men and women deserve? Mind you, my MIL is lovely and her nature makes her easy to love. I’m not sure it’s as easy to love some of the other residents, especially the ones who shout a lot or spend all their time moaning. Who knows whether that’s their natural temperament or the result of some form of dementia? After all, they’re in a care home for a reason.

We got in the car, MIL and I, and drove to the pub, where we met the rest of them. Seven of us in an English pub on this dreary grey day, though the smiles all round made it seem warmer. It’s not been a bright spring day today at all. It was cold, for a start, and rainy. February cold. Brrrrr. On days like these it’s not so much England’s ‘green and pleasant land’ as England’s grey and dreary land. Still, the warmth of the company more than made up for the weather and the cheerful, obliging service from the local chef turned a very good pub lunch into an excellent pub lunch. Have you ever noticed how much a friendly face and a cheerful disposition can change an entire encounter?

After lunch we headed off to the Garden Centre. You know you’re getting old hurtling towards middle age when spending Sunday afternoon at the Garden Centre sounds appealing. Not for the first time was I glad we have the two extra seats in the back, so that we could all fit in the car. This car is so versatile and so cheap to maintain it really is a godsend (that’s another marker of middle age, I think, being pragmatic).

Home for a warming mug of tea when the queue in the cafe looked too daunting. The two girls snuggled up with Nanna on the sofa bed watching a DVD (one of the benefits of not having a free-for-all with TV is that when they do watch it they think it’s a treat). I’m just about to pop the kettle on for a proper Sunday tea, complete with wedding-gift tea set and cake stand with dainty treats sausage rolls.

EMDR again tomorrow. Not looking forward to it. Daniel facing the lions’ den? Yes, pretty much. But more so, because I know those lions will be roaring in my face tomorrow morning and I’ll just be sitting there, clutching my Bagpuss (part of my comfort box) and clinging to hope.

And now, Lord, what do I wait for and expect? My hope and expectation are in You.

Psalm 39:7 (Amplified)

Yet I can’t help but just be so very, incredibly, overwhelmingly thankful.

Happy Mothers’ Day x

Small

I spent the morning with my elderly mother-in-law today. She has dementia and lives in a care home, but we visit at least once a week and I was determined to take her out this week while I have no studying. The past couple of times M has seemed more confused, more clumsy, more tired. From what I have read about dementia this is just the gradual, if not unexpected, decline with the passage of time. Today she asked me the whereabouts of her husband, so I had to gently tell her of his death. We have had to do this several times, though not as many as you would think. She began to cry as the news hit her afresh.

“I forgot, you know.” She said, at once both pained and vulnerable. She blew her nose, “I didn’t mean to.”

“I know.” I replied, taking her hand.

With a ragged breath she smiled and said, “Time goes on.”

“It does. And we hold on to the things that matter most.”

“You’ve a nice way of putting things,” she said, calmer now. “Thank you.”

I lifted the teapot and poured, thinking: if my life is destined to be small, and not grand, if my remaining years are to be spent giving smiles to folk who need to see a friendly face, or a gentle word to someone in distress, I will praise God and thank Him for the privilege.

Backgarden Chickens and Other News from the Lost Corner

I have just picked up a book called ‘Backgarden Chickens and Other Poultry’ – you know, ’cause we’re livin’ the high life in this Lost Corner of Middleshire.

After studying the environment as part of my Open University degree I have become very interested in being more self-sufficient and having a less wasteful lifestyle. We’re planning to move again and will have a larger garden, so chickens might be a option. If you have been following my blog for any length of time, you will rightly consider the fact that we’re moving house again as slightly bonkers. Well, yes, I admit to the slightly – largely, in fact – bonkers nature of my life. But I’m doing great, thanks for asking. As part of this less wasteful lifestyle, I’ve also gone slightly nuts over crochet, though none of my projects are finished yet. But I found myself drooling over a crocheted jacket the other day.

Pssst! If I usually give you a Christmas present, you now know what to expect. Groovy 😉

Maybe I’ll post photographs when my projects are complete. Maybe I won’t. Ah, the delights of being a housewife-cum-mature <ahem> student – [aside: the other day the Eyebrow Threading Lady told me I looked great for a woman in her 40s. I am not in my 40s. Eyebrow (what’s left of it – she seemed to think I no longer wanted any) raised in irony.]

Anyway, we have been renting for the past two years and have finally made the decision to buy, although this time we shan’t be moving to a whole new area. Because, you know, when you’ve done that three times in two years the novelty wears off. This will be our fifth home since we married in 2010. But I’m so excited because at last I will be able to put pictures on the wall and redecorate when I want to and sledgehammer holes in the wall should the whim take me! Maybe not that, but hurrah! We have a second viewing of a gorgeous, slightly run-down Edwardian semi and I am beyond thrilled.

In other news – my son, who has autism and is now taller than me, still lets me know on a daily basis where my flaws lie. He’s very matter-of-fact about it. Sheldon Cooper eat your heart out. I’d just like to know when the writers of Big Bang Theory met my boy, because they do such a good job in recreating his mannerisms and concrete thinking. Still, you have to smile…

And in yet more news, my father-in-law is home from hospital for the nth time this year (which is good) and is with my mother-in-law in a nearby care home. It is a lovely care home with warm and friendly staff. We do our best to visit daily and to ensure their needs and desires are met. Yesterday I was ill and stayed in bed all day (I’m fine now, thanks). As a result, Frank took on the role of mummy and daddy and didn’t get to visit his parents. I visited earlier today and took my MIL out for two hours, looking round the shops, which she loves. On my return, I went to write in the notebook which she uses to remember things (she has dementia so this is her way of trying to keep track). My heart sank when I saw the entry for yesterday. It followed lines and lines of ‘when can we go home?’ ‘NEED to go home!’ etc.

“8.25pm Frank did not come

It said, underlined. And then, on the next page, I saw this:

‘CRUEL’

It is hard when you know that you have done all that you could, for months on end, for someone, and they still conclude that you’ve been ‘cruel’ (it’s not the first time that word has been used). Still, I guess that’s part and parcel of being elderly. They have become so focused on their own little world that the fact that other people might have other concerns, or things to deal with, gets lost. Also, I take comfort in the fact that five minutes after this was written, it will have been forgotten. Such is dementia. I tore it out because I didn’t want to leave it there, with my sweet little note about having been out shopping coming after. It just didn’t seem right, somehow.

If you know someone who is caring for a relative with dementia, please pray for them. It is not an easy road to travel, both for the sufferer (who cannot understand why people are treating them differently and conclude it must be for nefarious reasons) and for the family, who have to balance taking control, but still treating their relatives with respect and dignity. Some days, this is a very difficult task! Frank spent two hours trying to explain, gently, the reasons they can’t go home, two days ago. He has done this now more times than I can count.

I was praying about the situation earlier and ended up saying, “But God, it’s like banging my head against a brick wall!”

And God said, “So this is all about you, right?”

I laughed, forgot about myself, and prayed in earnest for the needs of my in-laws.

Who says God doesn’t have a sense of humour?

Autism, Dementia and Repeating the Same Conversation

As anyone with experience of autism knows, having the same conversation over and over (and over and over) becomes par for the course. As does being interrupted (because the person with autism doesn’t realise they need to wait their turn). Sometimes, one just has to bite one’s tongue, pray for patience, and take a deep breath before answering. Again.

 

But what happens if you…

 

Add two other children to the mix, one with suspected Asperger’s (very clever but lacks empathy, etc.) and one with a history of anxiety (too much empathy?).

 

Add your own turbulent life journey with which you are trying your level best to just cope and not be depressed/anxious/suicidal… only by grace…

 

because all is grace

 

And what happens if you then…

 

Add an elderly mother-in-law who has dementia and comes to stay because she can’t cope at home alone while her husband is ill in hospital.

 

And you shake it all up by repeating the same conversations with (what feels like) numerous people all day long who also have an inexplicable desire to all talk at once. At you.

 

And you gulp it all down, all at once, until you are questioning your own mental state.

 

******

 

Yep. Sandy says ‘time out, please’.

Oh well, it’s not the end of the world. 

Ford Prefect where are you at a time like this?