A Life Not Quite Perplexed »

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Category Archives: Autism

It’s a style statement.

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She knew what she wanted when she returned from school. Her top, a pretty shade of jade was not to her taste. Instead she sought a top of pink, long sleeves on this rare for this year sunny day.

A look in the mirror confirmed, “me!”

The tops had to be tiered not one swapped for the other.

“Are you sure?”, brought a smile, a nod. She is sure.

A pink top over a jade top, her choice, her taste, her decision.

So in the heat of evening as the setting sun streams through the window she sits and revels in her choices, points to herself, “star!”

Yes, yes you are. A star, unique and brilliant.

And utterly determined to wear the pink over the jade because it is you.

I hope your day gives you the chance to do something just for you, however unique, because you are a star.

Lynn x

© 2013, Penbleth / L. McG.-E.. All rights reserved.

Sleep, I remember that.

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One of the most challenging aspects of parenting is lack of sleep. Those seemingly endless sleepless nights take a toll on our energy, our drive and clear-headedness. It can be pretty hard to think clearly and take a proportionate, balanced approach to our waking days, least of all those days full of challenge, when we are sleep-deprived. As parents we tend to hope that the sleeplessness nights will be confined to our children’s babyhood and that as they grow their sleep will improve. For many that turns out not to be the case.

In our house sleep became a distant dream with our youngest child, for more than twelve years my husband and I dealt with broken nights and sleeping in shifts to look after her. We tried all suggestions but to no avail. Endeavouring to keep awake a child who is determined to fall asleep is almost impossible, on the few nights we succeeded rather than stay awake until 9 p.m. as we hoped we found that she would still be going strong long after midnight. Most nights we had no success and sleep would claim her at about 8 p.m. only for midnight to see her wide awake and ready to begin a new day. Night by night we took it in turns, one to watch her and endeavour to encourage a return to sleep until about 4 a.m., the other to take over after that, then all swap over the next evening.

It ate into us, leaving us drained, snappy at times and unenthused. I could take advantage of working part-time to grab a midday nap, my husband couldn’t. We began to fear it was to be never-ending. Respite nights when our daughter slept away from home and we had the evening to ourselves were a godsend, I suppose we would have coped without them but it would have been exponentially more difficult without the knowledge that for two nights a month our daughter would be off, having fun and being cared for while we could get some rest. Of course for years we lay awake wondering if she was okay and if we were going to get a telephone call to tell us there was something amiss, several times we did.

Twelve years or more of broken nights and we thought it was going to be our life story, then one night a couple of years ago our daughter went to bed and slept through till morning. We didn’t, we woke several times to go and check that everything was okay, yes we feared the worst, that a seizure had claimed her in the night, gratefully letting out our own held breaths when we could hear her rhythmic sleeping ones. The next night it happened again and then again and again until a week had passed and each night had been slept through till morning, we were elated, and strangely exhausted. As the weeks turned into months we began to feel this was it, an important breakthrough had taken place. Our strength, energy and enthusiasm began to return. We could look forward to the evening knowing we would have some time to ourselves like any other family after their children had gone to bed.

Our youngest also began to improve, herself no longer exhausted she began to learn more, say more, do more. We noticed an improvement in her temper and temperament at home, school and respite reported the same. Where each day prior to this she had been often angry and unsettled for little apparent reason now she was more open, more understanding, more capable of listening when things were explained to her. Along with the increased sleep came fewer seizures and increased learning, we felt we were winning on all fronts.

Each year as the days lengthen I feel rejuvenated by the returning sun, its only downside felt each morning as its increasingly early rays call my youngest from her sleep. We have come to expect this, we know that often she can be encouraged to lie down again until closer to a more reasonable waking time. This week however we have seen a return to waking in the middle of the night and exhaustion during the day. During those few nights I have felt the dread of a return to lengthy periods of wakefulness. Last night she went to bed exhausted, this morning she woke at our usual waking time. My entire being sang a song of relief. Tonight we will hope for the same and the cycle to remain broken.

I hope today brings good things to you.

Lynn x

© 2013, Penbleth / L. McG.-E.. All rights reserved.

Plans change

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It’s pretty easy to make plans but sometimes you have to be open to them changing. This evening was supposed to be respite for our youngest, yesterday I received a call to tell me it would have to be cancelled due to unforeseen circumstances. These things happen.

As a couple we had thought of heading out somewhere together without any of our children, the first time we have been able to do so in the almost 23 years we have been parents. Instead we will spend the evening at home, perhaps treat ourselves to a takeaway.

In our earlier years of parenting our youngest, when her behaviour was extreme, the few times respite had to be cancelled at short notice were devastating. It is terribly difficult for someone who has not cared for someone with special needs to appreciate just how demanding this is. As parents we often hear people say, “I don’t know how you do it.” It strikes me this is put out there as if there is some other option. Instead we take each day, sometimes each moment and we work our way through it. Other times I hear it as incredibly dismissive, a little pat on the head to the poor imposed upon parent by someone who can say, ‘I showed sympathy, now I need do nothing more.’

It is rather along the lines of a question someone asked me several years ago. A wonderfully kind and considerate person asked me, “is there anything I can get for you?” Outside of a café there is a limit to the usefulness of this question. When I held eye contact for a while and then said, “no, thank you”, both of us knew what had not been offered. Sometimes it is easy to offer a thing, money or equipment, yet how many step in and say, “I don’t know how you parent in such a demanding 24/7 situation, let me look after your child while you go have a coffee, or get a haircut or …, or … ” That is rather more difficult, it demands the most important things of all, time and self.

This weekend as my boys are in university and my older daughter is away for a couple of days with her friend and my youngest isn’t quite as challenging as she was it really isn’t such a big issue that she doesn’t have respite, there will be other days. For us the times when I relied on the knowledge that she would have hat night was what got me through the time between one visit and the next.

There are other parents, far too many of them, of children and young people who work all hours and divide their time as a single person or as a couple so do their utmost to give all of their children as good a childhood as possible. Perhaps you could be of some active help. Not everyone will want it and that’s fine, that’s their prerogative but some will, perhaps you could make a difference.

However your Friday and your weekend works out, I hope you can find some time to enjoy it.

Lynn x

© 2013, Penbleth / L. McG.-E.. All rights reserved.

Round and round it goes.

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It is Tuesday morning, the house is empty save for Rosie and I. I have time to savour some breakfast before getting on with the day. My mind, however cannot be still.

Following a night of fitful sleep my youngest dozed on the sofa in the lull before school. It is quite a common thing for her, a return to sleep before school. Unfortunately it sometimes means a grumpy child upon waking. In this she is very much her mother’s daughter. However grumpy for my youngest can be a precursor to aggressive and so this morning I saw the beginning of a snarl, a physical retraction that is often the forerunner to her lashing out at whomever is near.

A calm voice, a proffered drink, stroked hair, all little things designed to ease the transition to waking and stave off unwanted behaviour, yet as I took her to the bus I wondered how the journey and the day would progress.

Time to take a deep breath and endeavour to let it go. School will tell me if they have a problem, the bus driver and the escort will tell me if there was a problem on either journey, until then worrying is pointless.

Meanwhile, Rosie snores away on my chair, having annexed that for her own. She has the right idea.

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Today I hope you can find a way through any worry or stress you have.

Lynn x

© 2013, Penbleth / L. McG.-E.. All rights reserved.

Welcome to Friday.

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Friday morning and a return to normality. My youngest woke like the lark, happily unhindered by inflamed eyes or any other problem. Fortunately she is quite happy at the prospect of returning to school, she enjoyed her unexpected day at home yesterday and will enjoy her day at school today. Thankfully her autism has never caused her to have difficulty adjusting between both places.

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One of the tools that helps us in this is her home/school diary. I truly wish all schools had the time to use these. They are a wonderful way around the old conundrum of asking your child what they did in school today and getting the ubiquitous answer, “nuthin’”.

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Tonight is respite night. My youngest will be collected from school and head off until tomorrow lunchtime. She will have a wonderful time. Long gone are the days when we couldn’t tell her in advance about activities because she would expect to do them immediately. Now we can say in the morning, “you are going to school and then you are going to respite”, and she can know how her day is going to develop. When she was younger and couldn’t cope with this I always felt life happened to her rather than really involved her. This ability to be able to understand concepts like, “now”, “then”, “later” and even the dreaded previously dirty word, “wait”, helps my daughter make much more sense of her world. How readily I had taken what has seemed to me a basic understanding for granted until she came along.

Whatever you are doing this weekend I hope you find some time to relax and enjoy the simple basics, they make a great difference.

Lynn x

© 2013, Penbleth / L. McG.-E.. All rights reserved.