untangling this thing we call life…

Monthly Archives: January 2013


A couple of weeks ago, I posted a status on Facebook laced with more than a little desperation:

20 January
Strategies for dealing with constant whining in a very very young 9 year old? I can’t deal with the root cause for reasons outside my control, but I need fire fighting methods please ūüôā
How I wish I could easily put a little blue box around all that… anal retentiveness is not easily abandoned!!!
Anyhoo… ¬†a plethora of responses followed, all understanding, a few typical of caring folk who do not live the special needs life others do, and some helpful ideas.
I took one of those ideas on board in particular: to allow my darling Little Man 10 minutes of whining time a day.  This he embraced with his usual enthusiasm and zest for life, and my! what quality of whining there was!
Funny thing though… ¬†A few days later, when I told him it was time for his whining time, he asked to save it for later, then forgot! ¬†A week on, the whining is almost non-existent (well, it’s there, but at normal levels!!).
so… enforced whining time, with a reassuring, encouraging mother to really listen to the whining ten minutes a day.
But the other strategy I’ve used seems to have been the real gem (so far… I’m not expecting it to be a miracle, I’m too experienced in that particular path).
I have made a little chart for each of the children to fill in.  I encourage them to chart their emotions throughout the day.  And Little Man has taken this on board, together with his assistant at school to astounding effect!
His first day was all over the place:
Emotions chart day 1

Emotions chart day 1

Success in maths - a proud moment!

Success in maths – a proud moment!

He’s a normal kid… gets angry too!

 

The beauty of this system lies in its simplicity: by charting his emotions throughout the day using just three smiley faces, 5 shades of colour and nine or ten emotion words, he is becoming emotionally self aware. ¬†He is also seeing his success, and notices how often he is calm, or happy. ¬†The rare moments of “proud” are celebrated for hours after the event. ¬†And he is able to see visually how quickly he can overcome the moments of anger (which are still considerable in their intensity).

I can see it too, which makes it a good deal easier to remain calm and help him through those moments.

Sweet Girl is using the system… with less obvious success, but I have hope that in the long term it will be of great value to her.

Long may this island of peace last!



I am currently basking in an uncommon wave of calm. ¬†Just enough has moved forward today to make me feel that things will indeed be alright in the end. ¬†Not a great deal happened. ¬†I had a two hour long conversation with a psychologist who left me feeling that she understood how seriously Sweet Girl must be taken. ¬†As we ended our talk she also let me know that she agreed with me about the need to sort out Little Man’s schooling.

Do I really have an ally at the Authority???  Maybe!

Sweet Girl’s teacher also made a decision which I think may make a vast difference to her school life. ¬†In order to allow Kesia to stay with one teacher, in one classroom all day, she has changed maths groups. ¬†It was a brave decision by a teacher to compromise a little girl’s learning by dropping a couple of groups in order to help her attend school ?full time?! ¬†And one I am extraordinarily grateful for. ¬†Sweet Girl came home at lunchtime more stable and happy than I have seen her in months.

The storm is raging outside.

Our ongoing battle with the Authority for Little Man is in full swing.

A new battle with the same Authority looms in the near future for Sweet Girl.

I was obliged to send a letter into school this morning which promises side winds of gale force strength.

The storm is battering at my door.

But just now, I am in its eye.  I am happy, and calm and enjoying this moment of brief respite!



me withinThe me you’re likely to meet, if ever life should twist in such a way to allow us such a pleasure, is the me I lend to the world. ¬†The me whom others think is strong, optimistic, patient. ¬†The me whom others praise, often with the words, “I couldn’t do what you do”.

(Of course you could.  I did not choose to live my life, and I suspect that if I had yours I would feel the same way you do.  But the reality is that the vast majority of us rise to the occasion.  We do what must be done, because the alternative is far too sad.)

That “me”, the one you’d meet, smiles a lot. ¬†She’s also learned the value of tears, and they spring quite easily when the going gets tough. ¬†She tries to show that emotions are different to actions; that it’s ok to feel sad when sad things happen; that even if you feel angry, you can choose to stay calm and find a solution without resorting to angry words or angry hands.

You might say she’s a pain in the butt at times, and horribly stuck-up!

That me, the “me without”, is the one who keeps the conveyor belt going. ¬†The one who writes those well worded letters (thank you so much, St. Mary’s Ascot, I couldn’t do it without that education) to various authorities, the one who makes lists and timetables and ensures that appointments are attended and all relevant people are notified of change. ¬†The one who just makes sure that the little machine that is my family keeps chugging along.

(Oh, and the one who just spent five minutes changing all the “that”s to “who”s in the last paragraph because she’s really quite anal about that kind of thing… Good grief, me!)

But then, there’s the me “within”.

Oh me, oh my…

The me within is maybe younger than the me without, but she’s definitely smaller… So small, in fact, as to fit inside my heart with room to spare. ¬†She’s the one whose¬†home just keeps on breaking, and as fast as she tries to patch it up it seems another wall begins to crack.

The me within is mostly confused. ¬†All those emotions with very little of the analysis reside in her. ¬†She wants to batter down the walls her life feels comprised of. ¬†She’s trapped in a repeating loop of hurt, and she wants out. ¬†Some days she’s screaming, pounding so hard that my chest feels like it may burst open.

Other days she loses hope and energy and sits in a corner of my heart, knees pulled up to her chin, sometimes crying, sometimes simply still… ¬†The stillness scares me most.

I must remember that the me within is the one who jumps for joy at the slightest hint of happiness.  A red sky at night, a hug from Eldest, the smallest things can raise her spirits.  And in turn she allows the me without to rejoice, to take pleasure in a job well done and a hint of pride at still being on my feet.

We work well on the whole, she and I, me and her… ¬†I try so hard to let her be, to let her feel. ¬†I wish I could in some small way take away the confusion, the uncertainty but her nature is to feel, not to think. ¬†And what she feels is True, even when it’s raw and irrational and confusing. ¬†So I try to let her feel, and remember that this pounding too will pass.



Tom's Christmas present has finally arrived!

Tom’s Christmas present has finally arrived!

A few weeks ago, it was all about the heart. ¬†This week, we’re talking growth and gut.

Little Man had his six monthly appointment with the endocrinologist, Professor… ¬†The Professor is a rather nice gentleman who clearly knows his stuff. ¬†We are reaching the inescapable conclusion that growth hormone treatment is all very well, but that if Little Man does not process food adequately, he’s not going to grow, no matter how much hormone you pump into him.

This is not new territory. ¬†I have raised the issue of malabsorption for years, with no results. ¬†It’s taken a combination of factors for the medical profession to realise they need to look into what’s going on more closely: a tube weaning program that failed, and growth hormone treatment that did not succeed as it should have done.

Time to get the smiles on and realise that any progress is worthwhile, even if that progress is rather backwards.  At least doctors are now paying attention.

The upshot of our day at Great Ormond Street is as follows:

From the feeding clinic:  they are going to keep the relationship with Tom going in the hope that we can try tube weaning again in the future.  BUT it would be unsafe to do so now given the unresolved physical and medical issues at play.

From endocrinology: we are to put the growth hormone treatment on pause for at least six months. ¬†In the meantime, we must be seen by gastro enterology…

Time to reintroduce more specialists!



So I’ve been knitting! ¬†I use Ravelry to find free patterns because I’m a cheapskate!!!

Image

Socky Slouchy Hat… Knitted on DPN’s, with some lovely sock yarn given to me by my sister

That hat was knitted from the brim up, whereas this beauty for my Sweet Girl was knitted from the top down…

Notice the gorgeous wooden DPNs given me by my sister!

Notice the gorgeous wooden DPNs given me by my sister!

And then the finished article on my little Miss:

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Two hats down, Little man was feeling left out!! ¬†Once again thanks to my sister’s wonderful present, I was able to send for some special yarn. ¬†Little Man’s favourite colours are red and orange, so I fell hook, line and sinker for this beautiful Alpaca yarn….

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Now, I’m working on a matching scarf for him. ¬†But what a delight it is each morning to see him pop that little hat on his head with a great beaming smile, and what joy to see him come out of school still wearing it!

 

Next is a project for me – using some Noro yarn for the first time. ¬†It’s been a little ambition of mine since I became a more avid knitter, ad more discerning yarn lover… And the time is nearly there!

 

This is my second post entitled “Sticks and String”… I simply didn’t want a different title.

Given the chaos of real life, those sticks and strings afford me a great deal of peace… there’s a lot to be said for a little time, a little creativity and simple items joined with repetitive movements.

 

Knit well, all you who do.

And those of you who do not… why not try it?



I’m bobbing about in rather murky waters in this aftermath to Christmas. ¬†As usual, the holiday went by in a mass of stress and joyful moments carefully captured in my memory, but with little time to spend on such self indulgent pursuits as blogging!

The new year has swept in with a mass of crises needing my full attention to resolve and so, once again, I am pushed for time to spend sharing those thoughts and experiences that I would love to.  I have two hopes here:  that my mind be a little clarified by the process of writing, and that maybe someone who stumbles upon my Simple Tangles will find something here of value.  Of course, none of this can happen if I do not write!

I have decided to sacrifice the “pretty” for the time being in favour of content. ¬†So I shall endeavour to write whenever I can, without worrying about finding appropriate and pretty photographs!

My lovely sister gave me two wonderful gifts this Christmas – a little diary full of inspiring prompts which I hope to use to fill these pages; and some beautiful knitting needles and yarn. ¬†So if I’m not too tired, I shall quickly post another little bit with some knitting I’ve kept my fingers busy with!

Tonight, though, I need a little more space than Facebook offers me, and I feel some need to keep those of you closest to me in the loop as to where life is pushing me! ¬†It’s a bit of a tornado at the moment, with an awful lot going on in many different directions. ¬†Today is pretty typical:

So!  Today started off far more auspiciously than most do.  Sweet Girl was in good spirits about going to school, having had a day off yesterday for an occupational therapy appointment.  (She was diagnosed as having sensory processing problems, which will now be addressed Рa good appointment, if draining.)  Little Man is already tired at the beginning of term and was harder to get up, but off we went, leaving home at 8am.  Tom zoomed ahead in his power chair as usual while Kesia and I followed on foot.

Upon arriving,Sweet Girl remembered that the seating plan of the class had changed and fell apart. ¬†Physically, she huddled on the floor under a table, shaking. ¬†No words. ¬†The teacher was called and came in very efficiently, and told her that she had not moved, and that she would be sitting next to a couple of girls that are well-chosen. ¬†Unfortunately, Sweet Girl’s brain translated “efficient” as “angry”, and the tears started flowing as the shaking got worse. ¬†I was able to calm her down remarkably quickly and left her. ¬†The teacher and I then had a chat. How difficult it is to explain the world of Asgerger’s, anxiety and sensory processing disorder to someone that has no real experience of it. ¬†Couple all that with high intelligence, and most people are flummoxed. ¬†Unsurprisingly, talk often turns to “are you sure she is not showing you what you want to see?”… and questions of this kind. ¬†It was a distressing conversation. ¬†I don’t yet know what the next few weeks will show.

I managed to get home by half past nine, rather too shaky for breakfast. ¬†Lucky, really, since I needed to get back to school by ten to pick up both Sweet Girl and Little Man for Riding. ¬†The timing is not ideal, but the benefit that each of them gleans from this is difficult to express in words. ¬†Tom’s muscle tone has improved beyond belief, as has his balance and confidence. ¬†He exudes happiness and self esteem after his lessons. ¬†Kesia is finally able to relax when on her pony. ¬†Her physical ability is very good, but the benefit is emotional for her. ¬†I’ve just read a few articles on the benefits of riding for children like her, and they are huge. ¬†I hope the school continue to allow the children to be out of school for this…

We got back to school for lunchtime, and Kesia came home with me.  A quick lunch with a little television (Sweet Girl really enjoys programs such as Edwardian Farm, so we are learning while we eat!), and we then settled down to work.  She was able to do her literacy work (yay! Рa rare occurrence, and far more likely to happen after riding than after a morning at school) while I did some biology.  Oh yes, I have started studying and am determined to manage 5 hours a week.  Yesterday I joyfully built a couple of molecules of glucose with matchsticks and plasticine!

A couple of fairly lengthy phone calls interrupted me while I was teaching Sweet Girl to do long division, but I was at least able to touch base with Tom’s community nurse and make a call to a potential secondary school for him (highly unlikely, but I have to explore every possibility).

Quick, quick, get those coats and shoes back on, it’s time to go and pick Little Man up. ¬†Remember to post a letter to Eldest on the way! ¬†Bakery on the way back – Little Man had his usual marshmallow cone while Sweet Girl experimented with a florentine – and some reading when we got home in spite of Tom’s tiredness and grump.

Put some eggs on to boil for dippy eggs and soldiers, then the phone rings…

My darling boy, Eldest, in tears. ¬†Sobs, angry diatribe, contradiction after indictment after railing and ranting… and more sobs… “Please take me home, Mummy, please, I can’t bear it any more”

Oh my. ¬†That heart of mine that’s so patched up, is breaking in completely new places.

It took me over an hour to fix it. ¬†Needless to say, dippy eggs became hard boiled eggs, and I’m grateful that Darling Man arrived early enough to put some kind of dinner together for the Littles.

I needed to calm Eldest, if only a little. ¬†Try and make sense of his garbled version of events. ¬†Eventually talk to staff, and once again try to piece together the reality of the situation. ¬†They were lovely, and quickly realised (as I had) that the message they needed to get across to Zack had been very poorly phrased and the ensuing confusion had resulted in a fairly major reaction. Back to Eldest on the phone to reassure him and put the world back together for him. ¬†Then a little humour to bring him back to the world…

I struggle to convey the “bigness” of that hour. ¬†My body was clear about it – shaking, shivering, crying but trying not to. ¬†My mind was racing to try and find the solution – because there usually is a solution and I have to trust that I will find one. ¬†It was very difficult to take Eldest back to school this week – he was very distressed by changes that were happening. ¬†For this to happen so soon is hard for me. ¬†I am quite sure that school will manage things well, but I also need to be present for him in a way that I have not been since he started there (because it’s been important for me to be in the background. ¬†The change of gear is badly timed, and takes getting used to!).

Today wouldn’t be quite right without being rounded off by a panic attack from Sweet Girl…

Darling Man has gone up for a shower and we’re both hoping for an early night.

Tomorrow?

  • School for Kesia
  • Hydrotherapy for Tom
  • School for Tom
  • Psychotherapy for me (thank goodness!)
  • Pick up Kesia
  • Therapy for Kesia
  • Phone call to try and find riding outside school time
  • Phone call to OT regarding Sweet Girl
  • Biology
  • School pick up for Tom
  • Tea for the kids
  • Swimming for Kesia

And the weekend? ¬†Ghastly paperwork to try and sort Tom’s schooling out. ¬†The deadline is next Friday, so I need a few hours without interruption. ¬†I’m so grateful that Tom is at Cherry Trees on Sunday! ¬†If I get a little time, I’ll put a few links in…¬†



A letter to my Son,
My darling Zack…
I’m sitting here, in the last few hours of the Christmas holiday. ¬†We’ve just begun a new year, 2013, and you are growing into such a promising young man that I feel a real need to let you know quite how proud I am of you.
So instead of writing my normal home notes to school, I am writing you this letter.  It is not meant as just a private letter, and I intend to share it with staff at school so that they, too can see how happy we are with your efforts.
I know that you have had a tough time at school this year so far.  In spite of difficulties, you have shown that you can maintain your focus in class and keep on showing improvement.  You have impressed staff with your ability to be kind, helpful and also to keep yourself out of disturbances that do not concern you.
When you came home, I know that you and staff were really struggling with matters concerning personal hygiene. ¬†I won’t lie to you, this was bothering me a lot. ¬†It is so difficult to explain why hygiene is so important; it is not only a vital part of good health, but a measure of your awareness of others. ¬†You see, as much as we take care to minimise things that upset you (loud noises, certain hand gestures, the words or phrases we use), so we expect you to take care to minimise things that make us uncomfortable. ¬†Body odour is a big one! ¬†But it’s also very difficult to talk to a young man about this without causing huge and painful embarrassment. ¬†And the last thing I want to cause you is pain or embarrassment. ¬†I am wonderfully, happily proud to say that you ‚Äúmanned up‚ÄĚ to this problem and tackled it perfectly at home. ¬†You only needed the slightest prompt to have your shower, which you did extremely well, every day. ¬†Well done, Zack.
I am more proud of the way you have handled yourself this holiday than I can say.  You have followed our rules with almost no argument.  You have made efforts to be a real part of the family and you have tolerated the withdrawal from your laptop with a maturity that does you great credit.
Each morning when you come down for breakfast, I see a young man who has taken care of his appearance, and is willing to put a little effort to fulfill our expectations (a shower every evening and deodorant evening and morning have meant that you have been a delight for the senses, both visual and olfactory – you look and smell great!).
We have seen a young man who has full control of his language and knows that offensive language should be limited to a very small time and company.  We have seen you master your frustrations and show us true respect.  We know quite how difficult that can be for you, and your mature behaviour is a sign of how much you care for us.
As your mum, I was moved to see you and your Dad work so beautifully together.  I saw how much you loved learning to program, and I also saw how much Dad loved to teach you.  To see you both doing something together, both working to solve problems, was a very special moment for me.  I have loved to see your perseverance to keep working until that problem is solved in spite of the frustrations you experienced.
It has been a little more difficult to get you out of the house, but once in your shoes and outside, you’ve shown that an outing occasionally leaves you smiling and engaged. ¬†I know that you loved your special day in London with Dad, and he’s looking forward to the next one!
So I am looking forward to driving you back to school in the expectation that you will take these new habits and keep moving forward.  I fully expect to hear from staff that you are a model of personal care and hygiene.  I also expect to hear that you are making an effort to moderate your language whenever you are within the earshot of adults.  I do understand that when chatting to friends you might let that slip, but I would be very sorry to hear that bad language had been used around staff.
You have shown your talents musically, which continue to improve, and I feel that you can begin to take some leadership roles in the school with Mr Moore’s help. ¬†You will have to let him know that you are willing to take on some responsibilities, and that you would like to help with concerts and other such events (assemblies?). ¬†Combining work in your private lessons with some hard work, I believe that you can achieve beautiful things in music.
I know that you have worked really hard in the holiday in the field of computer programming.  For you to excel in this area in the future, you will need to achieve qualifications in maths and ICT amongst others.  That will mean doing work that you may be much less interested in.  Try and remember your long term goal, and get those more mundane and boring units completed as well and as quickly as you can.  You will be amazed at how quickly the work will become more interesting.
I’m excited to see how you will progress in your lessons this term, and I’m especially keen to see some good effort marks.
You are brimming full of potential, Zack, and my honest opinion is that you are just beginning to be able to achieve it.  I hope you will grab life with both hands (figure of speech!), and work hard to reach those ambitious goals of yours.
With pride beyond imagining and love that fills the universe, I will always be…
Your Mummy



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