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Category Archives: Epilepsy

5.21.13

Sleep, I remember that.

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

10.2.12

Things change.

Autumn is increasingly showing herself in the garden. A sister to Spring, I have always thought Autumn too heralded new beginnings, certainly she brings change. Very young children begin playgroup, leading to nursery school, primary school and on and on till one day they head off to university or to begin work, setting up their own homes and patterns.

New plants show themselves, hardier and able to withstand the coming chill, others change their coats or put on a final show before they give up for the season. They might do this a few times yet but each appearance is to be cherished, it could be the last for a long time.

Today 14′s Autism and behaviour nurse visited me, for the final time. We first met when my daughter was 4 years old and almost uncontrollable. Teachers despaired, my telephone rang every day, often several times, a litany of issues, what she had done now, whom she had hit, scratched or otherwise made miserable. Then came the spurious illness reports, come and get her, we think she has … name your sickness, someone in charge of my daughter would decide she had it. Years and years of the same thing. It’s hard to blame them, those same days I wondered how I would handle more than a minute ahead of myself. When I dared think of the age she now is I was wracked with a fear she would be in care, or I would.

Several professionals were assigned, there was the social worker with whom I am only now at ease. There was the psychologist who while a lovely woman did absolutely nothing. She talked a good game, each visit would be full of what we were going to do, what assessment was needed and how these wonderful new programmes would help us manage our daughter’s behaviour We filled in forms, we made note of incidents, we monitored and remained calm and followed what little was offered by one person only to be told my a different on that was all wrong and we should be doing something else.

In the middle of all this was the nurse. She and I hit it off from the beginning. She didn’t seem to come with an agenda, other than genuinely trying to help. She spoke up for me in meetings when others dismissed me as only the mother. She understood my frustrations, she slipped me some useful information on the sly to help negotiate better care for my daughter.

Now time has passed, mostly my daughter’s behaviour is manageable. Mostly. Not always but then she is a teenager and she has special needs which include severe learning impairment. Our lives, her life, is never going to be magazine perfect. I can’t take a filter to it like I can to the snaps I take of the garden and soften out the harsh edges, mellow the light and make it look like anything other than it is. Our lives are challenging, we adjust our expectations to meet our reality, our dreams are much more grounded. What we have done, so far, is negotiated a journey that a times took us to the brink of despair. Tears a little further away than they were, mostly.

So today was our last visit. Other children need her more, other parents need her input. Let’s hope for the best.

Sending good wishes your way that your day doesn’t have too many harsh edges in need of a filter.

9.14.12

It will all be okay.

Over the last year or so we as a family have breathed a collective sigh of relief at the improvement in 14′s behaviour. We have felt a sense of ease, of progress even of daring to think we could perhaps re-introduce outside activities to our routine. You can see, dear friends, where we went wrong. Never, ever think such things, it is asking for trouble you would think that by now I would know this.

The first sign that all might not be rosy in the garden of behaviour was when the bus driver asked us if we had been contacted by transport services suggesting 14 should once more travel with other kids. Well, no I hadn’t and now that I come to think of it, why isn’t she travelling with other kids? She should have company, some friends on her journey to and from school. Actually, how did she come to be travelling on her own in the first place?

Really? It’s a wonder I am awake some days. I really had not put together that because the bus pulls up in the morning with no one else on it bar the driver and the escort and returns again in a similar manner in the afternoon, plus 14 of course, that any of this was deliberate. I thought it was one of those, just so happens, things. Hi, nice to meet you, I’m an idiot.

Now the driver and the escort are keeping a log of every tantrum, every expression of less than perfect behaviour so 14 can remain in a bus by herself. I must have looked plaintive, they were very kind, she lashes out at the others, was said in the kindest, most gentle of tones but it still stung. On Tuesday my husband attended a risk assessment for 14 to learn that while everyone is very pleased for us that she is behaving better at home she is much the same as ever at school.

Okay. Okay. It is all okay. You don’t let it hurt, you don’t take it personally, you don’t let the tears flow. You talk to her and you explain she mustn’t hurt others and you take a look at fingernails already clipped short and try to clip them a little more but oh my goodness it is close and you don’t want to hurt her. And you hug her and hold her and know there is very little on which you can count except your child being who she is and how much she loves you and you wish with all your heart you could magically alter her behaviour and while you are at it you could cure her epilepsy and her Autism and her learning problems and make her speak and understand and …

Okay. It is all okay. I’m talking to myself. It will all be okay.

I am going to steal a line from the lovely Michelle and send some love to you all as well.

One part of the blogosphere has been in mourning this week for the loss of our dear friend Julie. I won’t link to her site because Julie valued her privacy. Julie brought a lot of light and joy and happiness to our online world and I can only think how much more she brought to those who had the pleasure of knowing her in person. I hold her family and friends in my heart.

8.20.12

Weekend round-up.

That was the weekend that was.

Saturday was our 23rd wedding anniversary, as well as a lovely 35 mm camera which arrived a few days ago, Hub gave me some lovely flowers. I know there are those who argue against cut flowers and would rather have potted plants or something else entirely. Fine, that’s great, I however life cut flowers, they live for however long is realistic to expect of them and no one (me) need feel guilty when it has been neglected and is now withered some time later.

Sunday saw 13 become 14.

She had a great day, loved her presents and quite possibly had far too much cake.

All of this brings me nicely to today.

After spending most of the last three weeks at home I was at work today, 14 being under the excellent care of her father. Then I cam home and had a cuppa. Since Tumblr loves to love a meme, today is Mugshot Monday.

Of course no cuppa works without a read.

Since today was a work day and it is now late I was going to leave this post as just being a pictorial edition of The August Break, then I saw Wendy’s comment on Saturday’s post.

Here’s a truth, today is better because my daughter’s health is better and her behaviour is better, quite possibly those two are linked. She is now 14 and although developmentally, educationally, she is still pre-2 years in many things there are certainly signs of maturity in some areas of understanding. Some, not all.

It has also been about two years since she has had a seizure.

I am afraid to have written that, just as I hate writing or saying that her behaviour has improved.

I am TERRIFIED of what a seizure might be like should she have another one after all this time. In the past seizures following a long break have been severe, long and lead to many, many more. I have to just keep hoping that somehow something has changed. Or that her dosage is such that it is keeping her seizure free now her rate of growth has slowed.

I know how you feel about the anger. I know how you feel about questioning why this had to happen to your lovely child, or to you.

I don’t subscribe to the idea that I wouldn’t change things. I know there is a HUGE body of special needs parenting that says the opposite. Fine, that’s their business and their opinion, it isn’t mine, if I could make my child definitely seizure free, if I could remove her autism and open her mouth so she had more than just a handful or words. If I could open her mind so she could learn and develop as other children. If I could change things so that now I had another 14 year old with whom I was laying down the law about hair colours and suitable clothes and make-up and going out and when she had to back and all the other things that are part of parenting teens I WOULD DO IT IN A HEARTBEAT.

In a heartbeat.

I can accept where we are because where we are right now is a bit better than where we were this time last year. It wouldn’t take much to know me back to where I was if her behaviour or her health or both deteriorated. Not much at all.

I want you to know that being angry about it is also normal. Or, if others tell you it isn’t, then know, there is at least one other person who has felt exactly the same and who is trying not to dwell on how other 14 year olds are because it shows it gap between where her 14 is and where others are.

At least one other person knows how you feel.

8.18.12

Admitting it isn’t wrong. Plus a recipe.

A two-part post today.

Today I spoke to a woman whose situation shared some similarities to my own. She has a profoundly disabled child as well as an older one with no learning difficulties. Through our conversation I was reminded once more how important it is and how helpful it can be to speak to someone who knows.

The disability might be different, your family circumstances might be different but at heart there is a common bond, this wonderful child whom you love, who is the centre of all you do and who is, through no fault of theirs, it’s just how it is, incredibly demanding.

It might not be a child, you could be looking after a partner, sibling, parent. I am thinking of someone who needs constant care, constant attention.

Your life changes when this happens. Your plans, your intentions, your hopes all shift and are replaced with a new reality. You have someone who truly needs you, is totally dependant on you, all day, every day and every night.

Parenting isn’t an easy job, it’s a full-time endeavour however you decide to do it, someone has to be responsible for a young child. The difference is, they grow, they become independent, you get back some of your freedom. This keeps you going during those wakeful nights, the crying days when your baby has colic, when your toddler brings home a stomach bug, when your school age child brings home a cold, chicken pox, lice. Ack.

For many the opposite is the reality for the parent of a disabled child, your horizons narrow, life closes in on you. Those qualifications you slaved to get? Pointless as you have to give up your job to be home with your child, because you cannot say for definite that they will always be well enough to go to school. Or it’s fine while they are but you have to stop when they finish because there is nowhere for them during the week any more. Nights out with your partner or friends? Only if you have someone on whom you can rely to watch them. They are few and far between, the family and friends, neighbours, who might babysit children with no learning problems aren’t interested or are afraid to be left in charge of someone with such high levels of needs. Who wants to have that responsibility? Who wants to change the nappy of a teenager or adult? Who wants to be left with someone who might have a seizure, or whose feeding tube might block? Or who needs lots of medication at a set time?

Your friends are talking about their lovely holidays? Great. You don’t begrudge them but boy how those distant shores call you. Other countries, other places, you can no longer go because your child can’t travel that far. So you listen to the stories of their trips and then the gall as they ask why you don’t go anywhere and you want to scream at them, can’t the SEE? Do they wander around with their eyes closed?

Someone mentions a job that would suit you, it’s just the thing with your qualifications and skills. Great. Someone else can do it, you have your full-time job.

Sometimes, in the quiet of your mind you whisper, “I wish.” “I wish I could take that job.” “I wish I could take off on a trip.” “I wish I could go to bed when I want and be sure of a night’s sleep.”

Sometimes, in the quiet of your mind you whisper, “this is hard, I don’t know if I am able, I don’t know if I can go on, today is so hard I won’t be able to do tomorrow.”

Sometimes in the not so quiet you sit and weep and it’s not over anything specific and perhaps you do feel a bit sorry for yourself, this isn’t how you thought it would be. Then, then you are riven with guilt.

Your child, your parent, your partner, your sibling, whoever it is for whom you give constant care, you love them. They love you, they need you, you would not be without them for anything. They have made you one hundred times better than you were before. You know what’s important and it’s not what is this year’s nail polish colour, although there’s nothing wrong with knowing that. You know as well that treating yourself to this year’s nail polish will give you a little fillip when you most need it, why shouldn’t you have your moments of frivolity?

What I took all this time to say is, it’s not wrong to admit it is hard. It’s not wrong to say you don’t always know if you can keep on coping. It’s not wrong to wonder what the future will hold and admit it scares you. It’s not wrong to admit you are only one person, a person, not a super-person and that sometimes you need help.

Here’s a truth, if you feel that, at least one other person feels the same, me.

There are good days when everything is wonderful and nothing is a problem and why were you even worried. There are not so good days when it is bleak and black and draining and you can barely put one foot in front of the other and even the smallest knock will set you on your behind.

And now for something completely different.

The recipe for the apple cake, because I was asked.

APPLE LAYER CAKE — Oven 160℃, 325℉, Gas 3 — 1½ hours

150g/5oz soft margarine

2 large eggs, beaten

225g/8oz golden granulated sugar

1 teaspoon almond essence (I used vanilla because 17 doesn’t like nuts)

225g/8oz self-raising flour, sifted (this is cake flour, not Plain/All Purpose flour)

1½ teaspoons baking powder

350g/12oz cooking apples, peeled, cored, sliced

25g/1oz flaked almonds (I sprinkled the top with Demerara sugar, see note on nuts above)

Method

Place margarine, eggs, sugar, almond essence, flour and baking powder in a bowl and beat thoroughly till well combined. (I creamed the butter and sugar, then added the eggs and vanilla essence then the flour, BP powder plus 1 teaspoon cinnamon, ½ teaspoon All Spice because I like a bit of taste, very yummy). I added 2 tablespoons (15ml) of milk at this point as it seemed a little tight, see how yours goes if you need to add 1 or 2, no more as the apples make the cake very moist.

Spread half the mixture in base of 20 cm/8″ loose-bottomed cake tin (make sure you grease and line it). Cover this with sliced apples then add the rest of the cake batter. Sprinkle the top with flaked almonds (or sugar or both, why not?) and bake in a moderate oven for about 1½ hours until evenly golden and shrinking away from the sides. Use a thin skewer, uncooked spaghetti/linguine/vermicelli to test for doneness, it takes a while and remember the apples will make this moist. Turn out and cool on wire rack.