The Day After

Yesterday I posted about my daughter’s sleeplessness and I asked for help.  So simple and it worked.

Today I feel so different.  I had the visit from the Doctor while my daughter slept.  For an hour I talked about my daughter and something miraculous happened.  I was listened to and heard.  I have a lot of respect for medical Doctors, but the truth is that in our system (UK), they generally don’t have more than a few minutes for each “normal” appointment.  This Doctor, and her associate Nurse, listened, were respectful, had ideas and insight.  They left me feeling for the first time that truly “the system” is on my side.  A miracle.

Today, I live in a more “joined-up” world. 

Yet the world is the same…..

I wonder what changed…….

On the Edge

I often think quite a lot before I write a post, but this one is coming right out.  My daughter is still not sleeping, though with acupuncture treatment she is slowly but securely getting better.  Men, think of all the women you have lived with and how you feel around their PMS.  Women, think how that feels like.  Well, with my daughter it’s like living with that a hundred fold.  When she is in “sleepless” mode, she spends the night trashing her room, ripping up books, clothes, toys- but all very quietly and methodically.  During the day she is exhausted, but still able to quickly “post” everything off the table or pull the books from the shelves.  Over time, the “manic” is retreating.  The acupuncturist has treated her to balance her hormones and we are nearly there.  She has explained it’s like throwing a pebble in the water- at first we had big reactions- more of the same- and now it is the last few ripples…but Oh! I am exhausted….

The last few nights I decided to have her in bad with me rather than try and settle her and wake her as I slip away.  It’s been OK. Lots of “emotional” work in those dark hours when our feelings (even for autism) are nearer the surface.  Lots of tapping (EFT).  Lots of tears “I miss my sister and Daddy”, lots of trying to be a “happy detective” and work out what the emotional causes of this hormonal shift are.  Lots of cuddles and making safe.  And yes, she has slept.  Last night, from 11 to 12pm. And then from 6am only to be woken by our lodger leaving her room next door. Now its 8.30am and I have given up trying to get back to sleep.

Later, at 9.30am we get a home visit from a Doctor.  We have been waiting since November for this appointment.  Four months.   The length of the acupncture treatment (one or two hours a week).

So this blog is really just an old fashioned cry for help.  I am committed to helping other parents who go through autism.  But for today, I wish for your help. 

Prayers.  Thoughts.  Hopes.  Thank you.

The hole in my heart

This weekend, my autistic daughter has gone away for the first time.  She is not being tucked up by me or her father or her step-father.  Not one of us is making sure she has her snacks, or her non-gluten meals.  Not one of us is reading her favourite story, or sticking stickers with her….

I have a hole in my heart.

It was so clear.  The minute I came home from seeing clients after dropping her off, I poured myself a drink.  I don’t drink.  Last night I watched TV for four hours.  I don’t do that.  I couldn’t go near her room, even though there was (and is) a mass of stuff to clear up from her last rampage.  Yes, I am walking past her door.  I need to, to get to my computer.  But I am cutting an energetic swathe around it, as if there is a force field of bottled up pain.  No wonder I haven’t posted here for so long.  There has been too much going on, particularly in emotional body……..

So, when I looked, I found a hole in my heart.  A sort of sucked-out feeling.  I’m not missing her, I’m just terrified.

So I tapped.  Tapped using my EFT as if I was my own client.  What are you feeling?  Is there a particular memory with this emotion? Yes, when both children were little…..What happened?  I tap on the memory.  It is so painful I almost stop breathing.  But I persevere,  I trust EFT.  I trust myself.  I want to be free of unwanted negative emotion that is holding me back.  I weep.  I do a Matrix Re-Imprinting sesion for myself.  It only takes a minute or two.  And then the memory is clear.  I can look back without judging myself.  I can see I did something I would have preferred not to do (actually, before you start fantasising, it was the first time I yelled at the children to put their toys away themselves, but it was a big yell and very scary for them.  This I know, because I saw them freeze).  I cleared and forgave. Cleared and forgave.  And then I could breathe again.

So now the hole has closed.  I can open her door and look in her room without fear.  I can open the door to my own heart and look in there without fear.

Thank you.

I think she is very happy

I wrote before that my daughter is going through a withdrawn phase.  She is not sleeping well, she hardly talks, she is enclosed in her autistic world in a way we have not experienced for years.

I run a home-based programme for her, Son-Rise. www.autismtreatmentcenter.org.  Wonderful people come to our home and play with her, gently encouraging her, celebrating her, joining with her.  Over the last four years, we have got used to having conversations, being able to play make-believe games, having fun.  There is also more formal homeschooling.  When in the mood my daughter likes nothing better than a spelling game or writing task. 

But for the last two months, she’s spending two hours tearing bits of paper, then sticking them with exquisite attention to detail onto paper so that she ends up with a wonderful, chaotic mosaic.  Or sticking stickers from her magazines.  Or taking an hour to eat a plate of food, gazing into the distance and occasionally chuckling to herself….Or taking off a sock and spending fifteen minutes finding bits of fluff to pull off (most likely creating the fluff in the first place..in this phase, clothes get de-constructed thread by thread…..)

And being me, I worry. 

“Will she always be like this?”

Being me, I mourn.

“I miss my darling. I so want to talk to her.”

Being me, I blame (myself).

“I should have given her more play, more supplements, I should have made that trip to see that special doctor.  I am a bad Mother!”

Luckily, other people see things differently.

“Maybe she needs to be doing this”

“Maybe she’s going through a phase.  After all, she is a teenager.”

“Maybe she’s just upset.”

And some wise souls just be with her, accepting her exactly as she is.

After two hours gently playing with my daughter, hardly a word exchanged, but deep connection in their joint activity of drawing little dots, over and over, until their sheets were filled with rainbow joy, one of my Son-Rise volunteers wrote,

“I think K. is very happy”. 

And I do believe he is right.

Sometimes I’m just sad

Being a parent of a child with….well, in Britain we say Special Needs.  How is that different from being a parent full stop?  Why would a different brain or body make a difference to how we view ourselves as parents?  After all, every child needs looking after, feeding ,clothing and loving…

But, and here I sigh…… it is different.  It’s different emotionally.  It’s different because we have different expectations and judgements.  It’s different because we most likely have more to do….it’s different because we have to interact with so many social agencies (at least in the West where we are affluent..)

What are some common feelings?  Guilt, anger, shame, resentment……

What are some common thoughts?  I ought to do better………………..

I should love unconditionally all the time……………….

I shouldn’t feel angry…………………..

My daughter hasn’t been sleeping well the last 7 weeks. She has hardly slept at all. In fact, she is so exhausted she can barely make it through the day.  Her nights are spent tossing and turning, bathed in anxiety.  Her autism has returned to cloak her in comfort to the point that we have virtually no contact with her. Hardly any words.  No real soul to soul eye contact.  And this from a girl who could have multi-looped conversations, who, 2 months ago, interacted with the new children across the road to such an extent, she was invited to stay for supper!!!! The first such invitation in 16 years…..Success! She was happy. We were happy.

Why is this happening?  I don’t know.  I think I ought to know.  The doctors don’t know (and really don’t care- that’s another battle).  Pills don’t touch her.  She is determined to stay awake..  I suspect that on an emotional level she’s bereft.  Her big sister has left home.  That’s it.  They lived together all of my daughter’s life and now she’s not there any more.  No comforting sounds from the room next door, only 3 places at the meal table…. It is huge.  I can’t bring her big sister back and I don’t want to. 

Yesterday we took my daughter down to see her big sister at University.  A 5 hour journey each way for a 3 hour visit.  It was so she could see with her own eyes the reality of something she cannot conceptualize.  Her sister’s flat with its stairs, her room, her bed……My daughter sat on her sister’s bed cradled in her arms, and slept……..

Sometimes I just feel sad.  Yesterday was one of those days.

Anticipation- what kind is yours?

I love playing Solitaire…well, we all need some downtime.  I was mentally beating myself up the other day for “wasting time”, when I thought, “No.  There is a reason, a good reason, I am doing this.”  After all, we never do anything without a “pay-off” or “upside”.  I was really familiar with the “cost” or “downside”of my love of Solitaire, chiefly that procrastination gets in the way of me really achieving my goals….However, I firmly believe that nothing happens without a reason.  What was the jewel hiding inside my guilt?

When I went inside, I realised it was the joy of anticipation.  Every time I click on the Deal button, there is a chance that this will be the game I will win.  Every time I turn the card, it could be the one!  What  joy to see the hands stack up  neatly.  Now I am aware this sounds a little like the Joy of Gambling, and yes, I suppose, that “What if” is the drug that all gamblers get addicted to.  But for me, the jewel is that moment of anticipation, not what comes next.  It really doesn’t matter whether the game works out or not.  Its only a game.  At least I am not assuming it will fail.  Every time I turn a card, I get that faint, but real, thrill of anticipation.  And its an anticipation of something good happening.

What has this to do with autism or being a parent of an autistic child?  I realise that often when I am with my child, I have a different kind of anticipation.  I anticipate a problem. It could be that when I talk to a teacher, I anticipate a negative reaction about a behaviour.  It could be that when I get up in the morning, I anticipate a problem with my child getting dressed.  It could be anything.  It doesn’t matter.  But what I do know is that if I am anticipating a problem, guess what I am going to get?  Its all in my mindset.  I know this, but I forget.  Perhaps you do to.

So I have decided to CELEBRATE the thrill of turning the card.  The trick will be to turn the cards of real life with the same thrill.  If I anticipate things sliding neatly into place, perhaps the meeting will go well, dressing will go smoothly.  At the very least I will have opened up the possibility of success, not failure.  Anticipation could be fun!

One More Mile

Do you ever find yourself making allowances for your “special” child?  Giving that extra helping hand? doing things for them they may be able to do perfectly well on their own?  The urge to protect is the strongest primal emotion for all parents- it’s part of our DNA.  And when we have a child with autism, it is so hard not to protect.  Our hearts bleed for all those things that are so hard.  And then we compensate, wrap in cotton wool, make easy.

Today, I witnessed a wonderful example of not making easy, of going the extra mile.  In this case, the extra mile was literal.  I was out for a day’s hike with my friends and their lovely “special” boy.  We were on a sponsored walk around the absolutely stunning Loch Affrich deep in the Highlands of Scotland (www.treesforlife.org.uk). The sun shone in a blue sky with little white scuddy clouds.  The Scots pines stood proud on the hillsides.  The peaks of the nearby mountains were dusted with their first snow.  It was picture perfect.  You could have bottled that Autumnal scene and sold it around the world as essential Scotland. 

There was only one problem.  It was quite a long walk.

My friends’ little boy had never walked so far.  One mile into the eleven mile walk, “Are we nearly there yet?”  Four miles in, “Its too far”.  Five miles in, “We’ve been walking from the morning right into the afternoon and we are not even half way there yet”. (I kind of felt the same way…)  But he kept going.  There was the opportunity  for a pick-up on the way home, but his parents decided to walk all the way.   

That little boy was not molly coddled.  It was tough.  But as he reached the car, he knew he had done something he will always be proud of. He had gone the extra mile.

In training

Every time I snap at my autistic daughter, there’s a clue. 

Every time I put myself down, “I should have handled that better”, there’s a clue. 

Every time I blame the world, “They shouldn’t be like that”, there’s a clue.

Our lives are full of clues, over and over again.  The good news is that there are lots of solutions.  My solution is to take these clues to the oh so simple but oh so profound EFT (Emotional FreedomTechnique) and find I feel better. After a while, day after day, week after week, clue after clue, whole issues simply dissolve and there’s a whole lot of space where stress used to use up every nook and cranny.

My heartfelt desire is to let parents of autistic children, or siblings, or anyone else in a position of care and responsibility, know about EFT www.emofree.com.  Maybe I can support you, maybe someone else can.  It really doesn’t matter.  Support matters though.  We run ourselves ragged with the weight of it all.

Today I was in training.  Learning to take those same clues, everyday thoughts and images that inhabit our daily life, and take them to a different detective, if you like.  Not tricky or underhand, just a different part of ourselves.  The results were astounding though.  I did it for my daughter too.  I am blown away by the possibilities.  

If I can learn to take my everyday experience and transform what gets me down into something that lifts me up, then I have really learned something.

I like being in training.

Dream world

My daughter is not sleeping at the moment.  Not at all.  Five nights so far.  This happened last year as well, with all sorts of other behaviour changes.  Eventually we were given a medecine that magically put her back on track- what a relief.  Autism is a doddle compared to madness, and last year I really did think she was going mad (sometimes the Internet tells us too much).  This time round I am more relaxed.  I trust this is a process that has a meaning, and a solution.  Meanwhile, she has entered Dream World.  She hears voices and sees faces in the wall.  She took an hour and a half to eat her dinner, an hour to undress.  She is very tired.  Very, very tired. 

I have entered this dream world with her. I have had to cancel all our appointments.  Today I was meant to be at a professional training, to learn more about EFT so that I can support parents even better.  Ha! 

This was my training today- to join my daughter in Dream World.

Today was slow, and yesterday and the day before…..

I am always rushing around.  My favourite moan is “There isn’t enough time”.

Today I had all the time in the world.  Thankyou.

The Dawning

How long does it take to make a judgement about someone? Almost no time at all. We see them and instantaneously we have them pigeon-holed. Fat, middleclass, expensive hair, worried, ugly, gorgeous, nice shoes, fanciable, not fanciable, haughty, trashy……….Usually we either instintively feel good about someone or bad. We are comfortable in their presence, or not. We want to be nearer or keep our distance….our radar is constantly on the alert.

What about our children? How long does it take for people to make a judgement about them? Almost no time at all. They are the ones who are screaming in the supermarket, pulling down their pants in public, saying out loud “that lady’s got a big belly”. They are the ones standing too close to the next person in line, grabbing a spade in the sandpit, staring at the shop assistant. And the judgements? Naughty child, bad mother, she makes me uncomfortable, can’t they control him? And we feel bad.

When someone has a visible disability, we see it instantly.
When someone has autism, we don’t, but we still make a judgement.

When I am out with my daughter, I hold her hand. Why? She is fifteen and she is not a runner. I don’t need to hold her hand. But I do. It took some soul searching to understand why I do this. I would like to think that I do it for safety. Well, partly, when we cross the road. Perhaps I just never got out of the habit from when she was little? Possibly, but that’s not all. I realise I do it mainly so that people have an instant filter when they see us. “Teenage girl … looks normal ….but having her hand held by woman old enough to be her Mother…. must have something wrong with her…….I feel ….disdain/compassion/understanding/distanced……”

It works. I reckon it takes about a second and a half for “the dawning”. As soon as the “this person is different” thought kicks in, we are in differnt territory. I am lucky. We live in a small town so usually that territory means kindness and allowances made for her “oddness”.

But what for the children who look “normal” but who are simply unable to act “normal”.
There is no “dawning”, just judgement.

And it is a brave parent who can cope with that.