untangling this thing we call life…

Category Archives: Tom


To those of you who broke me this last school year – knowingly or not, willingly or not…

I don’t know why you felt so threatened by me.

I don’t know why you saw my attempts to help you help my child as criticism, overbearing, over protective, wrong.

I don’t really know what led you to choose to ignore me so utterly.

I don’t know why you felt that professionals who had met my child only once or twice must surely know him and his needs better than me.

But all those things you must surely have felt, for there is no other reason for your actions.  And the year is over now, and I and my Little Man will not be returning.

But know this: you broke me.  I will mend and I will heal, but you broke me.

All summer long, your voices have been dictating how I care for this little boy.  Those voices who spoke with such utter certainty about his energy levels, that he really did not need a wheelchair.  Those voices who maintained that he ate exactly like other children.  Those eye rolls each time I spoke to try and impress upon you the level of fatigue he experienced at the end of each and every day.  The looks of disbelief when I spoke of his tears of exhaustion and cries of pain in his sleep at night.  The boredom your faces showed when I asked you once again to prioritise physiotherapy over other activities (maybe rescheduling??) because I had been told how important it was by the doctors.  Your ever-so-reasonable justifications for not feeding him as much or when it had been agreed.

All of you… I know that you had good intentions.  I know that you never meant him any harm (honestly, I’m not sure you felt the same towards me, but I can live with that).  And I know that you came to believe that you must follow the professionals’ instructions, and that those were everything.  [You forgot that Little Man has many, many professionals, and that the only person they have in common is me.  You forgot that they see him once in a blue moon, and that I care for him daily.  You should not have forgotten that.]

And so, you broke me.  Your voices and actions were so powerful that they are beating down my heart, my mind, all those instincts that tell me what Little Man needs.  You see, you told me in those voices, in those actions, that I was wrong and you were right.  And you told me so often, so loudly, so unbelievably unkindly, that I began to believe you.

I began to believe that there must be more wrong with me than with this little boy, despite the fact that he is under the care of five or more specialist consultants at Great Ormond Street Hospital.

So in the last three weeks, as I have prepared for the day’s activities, my heart tells me what I should be doing, and your voices slam me down.  And the really insane thing is that I have been listening to you.  We have been using his wheelchair about 25% as much as my gut tells me to.  I have been pushing him to eat – the other night I became angry with his eating difficulties (guilt is not yet assuaged on that front).  I have refrained from asking playscheme staff to pace him according to my gut feelings, and let them manage alone (they are trained SEN staff…).  I have sent him on activity days with a gently push in spite of his tears of exhaustion, with my heart screaming at me to stop.

And now, half way through the summer, Little Man is yellow, bordering on grey.  He is in pain most of the time.  Leg pain mostly, some arm pain and tummy ache and regular headaches.  He is TIRED… so, so tired.  His eyes are huge, and dark.  His memory is hugely affected, and he is struggling to process all that is happening.  That leads to tantrums of monumental proportions (lasting several hours each), which exhausts him even further.

And you won’t see that.  Because you are tucked away enjoying your summer holiday.  Blissfully ignorant of his struggle, and of my heartache (which no doubt you would see as over dramatic anyway).  Sad to say, I don’t think you’d even see it if you were standing here right now.

You can’t change what happened this last year.  You will not have an opportunity to do things differently with Little Man, or with me.  I have to admit to a huge sense of relief at leaving which leaves me so, so sad… this is not the emotion that should be riding high at leaving one’s children’s primary school.

But I will heal and mend, and as I do so will my care of Little Man.  I’m hopeful that we will avoid doctors and hospital before I do, but my heart is strong enough that I think I will catch myself and him in time.  And we make a new start with new staff for whom a little boy such as him is wonderfully normal.

So you, in all of this?  If you were to read this; if you were to recognise yourself in this; if you were to ask me what I hope?

I would ask that you remember we parents of special children are always on your side.  We want to help you because if you can meet our children’s needs, they will be happy and they will thrive.  I would ask you to think the same of me… if my child is unhappy at home there is a high chance it is due to problems at school (even and especially if these do not show).

Listen to me.  Listen to the mother or father who comes to you for help, or to give you information about their child.  There is a reason for their need to communicate.  And armed with information you can be better… better teachers, better assistants, better adults.

I would ask you to trust that while doctors have a wealth of generalised experience, parents know their children’s needs far more intimately.  In the case of a complex child, the parent is often the only person who understands the intricacy of that child’s needs.  If you ignore the parent, the child WILL suffer.

I would ask you to put to one side for a moment your ideas of failure and success.  I would ask you to remember that you can only do as much as you can do within your environment.  And that environment, and your help simply may not be enough.

I would ask you to remember that sometimes, giving up is necessary for a child to succeed.  Sometimes, success is having the courage to say – this child needs something different.

I would ask you to lend your voices to mine rather than join the ranks of those who would quiet me.  Mine is but one rather little voice, shouting, crying, singing for my children.  There are many who would shout me down because what I sing is inconvenient.

You can choose – to listen to my song, and join with me to support it.  Or shout with those loud voices of denial, without listening because what I say makes you uncomfortable.

You have so much more power than you realise.  You need to know that you broke me.  You need to know that I will mend.  You need to listen, to care and to be so, so watchful of what you say and how you say it.  Mothers like me do not need to be broken.  We may appear strong, but really we are very, very fragile… a little like eggshells.

You have so much more power than you realise.  Use it wisely, and carefully.  Please.



image

It’s taken this long… Back in November, two medical teams had called up concerns over Little Man’s health, feeling strongly that there was a gastro problem that needed investigating.  The tube weaning team had called their efforts to a close due to “dangerous” weight loss, and the endocrinologist had stopped the growth hormone treatment for the same reason.  I’m not being dramatic, I’m quoting what doctors said to me.  Of course, the word “dangerous” may be spoken, but it is rarely written in a report.  And so when I relay what I have been told to others who look after Little Man, things break down rapidly if those others stop trusting me.  (That is for another time, another season… trust has been in very short supply for the last few months.)

So… in November, the endocrinologist referred Little Man back to the gastro-enterologist whom we had not seen for three years… why?  Goodness only knows: with so many specialist doctors involved in his life, we regularly fall through gaps, and I do not always chase everything up.  On the whole, if things are stable, I let them be.  Unfortunately, when he has not been seen for a while, the system requires a re-boot in the form of a referral letter.  As usual, the letter was lost, and it was up to me to make several phone calls in the following months to ensure that the referral went through and an appointment was finally made.

It’s unfortunate that in the meantime so much in Little Man’s day to day life began to depend on medical reports.  Anything that I as his mother report is now deemed irrelevant unless backed up by a medical report.  The frustration this engenders has me stymied when I try to express it… I’m hoping that inspiration will hit me and I suspect that I will pick up my little pencil and create some sort of drawing, but for now, the page remains blank.

Anyhow!!!  We are now at the beginning of June and have finally seen a very busy gastro-enterologist.  It was a slightly frustrating appointment, an hour later than scheduled (and Little Man has reached an age where his patience for medical appointments is at an all-time low), with a doctor who clearly was rushed off her feet.  To have her look at charts and suggest that my son is overweight is infuriating, and I hope to clarify at the very least the choice of words.  Most people who see him describe him as skinny, and his BMI is normal.  However, his head is rather large, and I do know that his weight is significantly closer to the “norm” for his age than his height.  But please, look at a child before using language like that.  Ho hum… following a discussion with a nurse, I suspect we will have a phone conversation to clarify that little chestnut!!

There was a very good point to this meeting.  I’d have loved more time to discuss my thoughts and concerns – I’ve done a lot of reading and thinking and would like to talk with an expert about the possible issues, but actually what we need is information.  And the first thing that needs to be done is to go look at what’s going on inside that little body.  I was very impressed that once the doctor decided that we needed to do a gastroscopy and a colonoscopy, we were sent immediately to the appropriate ward to meet a nurse and discuss admission.  Not only that, but we already have a date!!!  Mid July, we will be heading up to London for those tests, including biopsies which will hopefully give us some answers and some idea of the direction needed to help him.

The nurse was quite quite lovely!  As we went through the normal pre-procedure questions, she mentioned more than once that Little Man was quite complex and that she would have to talk to a few doctors to ensure his safety.  This may mean more tests before the oscopies, but for me it pointed out once more that my description of Little Man and his needs is not exaggerated!  She plans to speak to the cardiologist and expects an echo and ECG before the procedure.  She needs to speak to the haematologist to discuss his bleeding issues.  She was keen to hear my thoughts about what I hoped would happen, which gave me an opportunity to voice some of the questions I’d been unable to raise in my appointment with the doctor.  Sifting through Little Man’s notes is going to take her quite some time, but I came away feeling very reassured that his needs were being taken very seriously.

It was a long day, with a little boy who is becoming ever more fed up of hospital visits.  But there were lovely highlights:

We bumped into Dominic and his mum… visit them over on www.justbringthechocolate.com, they are an inspirational family and one we met through the amazing charity www.postpals.co.uk.  The boys had such a giggle, comparing wheelchairs and playing on a tablet.  It was a joy to listen to them just get down and chat and play, despite only ever having met once before.  It was also really lovely to meet up with a mum whose writing is a source of huge inspiration to me, and whom I follow largely through her blog and facebook.

Thanks to our chat with Dominic, we were a little late to the ward… Serendipity strikes again:  as we arrived, Dr Mattie was waiting for the lift with us!  Dr Mattie is a clown doctor, the first (surprisingly) we have met at Great Ormond Street, and he absolutely lifted Little Man’s mood!  The red nose was wonderful, as were the flashing shoes.  Little Man was left with stickers galore and a red nose of his own… but the best gift was the smile!!  The Theodora Children’s Trust has to be one of the most uplifting organisations I’ve heard of, and this link to their facebook page shows a photo of the Dr Mattie Little Man met today!!!  How exciting, exhilarating, wonderful at the end of a day of boredom, overheating and heading into a discussion of needles to come.

Little Man is rather pleased that he will earn a pound coin for having a cannula, even if he is asleep when it’s inserted – oh the silver linings we have to find to help our Littles…  Similarly, he thoroughly enjoyed his chips (thank you McDonalds) on the train ride home!  The tears that well up at the mere mention of needles mean that we will do the blood tests at our local hospital, with the help of giggle gas.  Luckily, the nurses locally have really reacted well at the realisation that Little Man is now in the throes of a real needle phobia, and that giggle gas is currently the key to helping him.  A great friend of mine is due to give a talk about this topic, and I thoroughly recommend her blog… go there now!!  It’s over at Coke Floats and Chemo and has a way of lifting you above the mud that you may be mired in.  Her work with doctors will, I’m sure, help little boys and girls like my Little Man, who grown into bigger boys and girls who are less afraid of doctors and needles than they would have been without her.

We’re home now, and he’s asleep – it didn’t take long after such a day!!  So it’s going to be time to get a bottle of Mummy’s best home made blend, plug it into the pump at one end, and into the boy at the other, and head to bed myself!!  Here’s to finding some answers at long last!



Tell me about your day  (click on this link to access the PDF!)

Yesterday, or so, I lose track of time these days, I wrote a little post about a new behaviour management technique I’m trialling with my Littles.  I’ve had such lovely comments about it, and it’s continuing to surprise me in such a positive way that I thought I’d share it with you.  In the photo below you’ll see that my first attempt didn’t have a good colour spectrum, and the Littles have told me they needed two “calm” emotions; one sad, one happy.  So I’ve moved things around just a little, and added more appropriate colours.

We find that sometimes, the colours are more helpful than the words.  Equally, the three “faces” I drew alongside can be all that’s needed.  My patience and time haven’t allowed me to put those into my computer – I’m still relying on that good old toolset: hand and pen.  Have a look at this photo to see what I mean:

He's a normal kid... gets angry too!

He’s a normal kid… gets angry too!

I print them out small to paste into their school contact books, but I’ve also provided a full A4 one for those of you whom it would suit better.  I need to keep a record of their moods, but you might want to laminate a big one and start afresh each day – especially if you’re only using it at the weekend?

Good luck, and I hope it helps!



Surfing dude!

Surfing dude!

Given that WordPress wouldn’t let me upload the most brilliant video, I’ve changed this previously empty post to a photo of Little Man!

He’s standing, balancing on a foam float!  Weekly hydrotherapy has improved his core stability, strength and stamina more that I would ever have thought possible… not to mention significant pain reduction!  Yay!



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 🙂
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!



Short update today…

Little Man Tom, as I’ve mentioned before, is struggling to grow, and keep weight on.  This despite being tube fed with lots of good nutritious, homemade food over and beyond what his height and weight suggest he should need.

A couple of weeks ago we saw the paediatrician who felt his Growth hormone treatment might be the cause of the weight loss.

Since I am the one who administers his nightly injections, I’m sure you can imagine that it has been emotionally very difficult topoke my lad knowing it might be making him ill.

But the one thing I’ve learned to do over the years is wait.  So wait I did.  Until last Friday when I felt that two weeks was quite enough to have checked a fairly simple question with the expert.  The first phone call was fruitless: no paediatrician to be found.  The second phone call led to an answer machine, so I left a message filled with both facts, questions and emotions.

More waiting…

Happily, Tom’s endocrinologist, Prof is a lovely man and quickly realised that this issue needed to be nipped in the bud.  I received a phone call a few hours later from the great man!

Conclusion… Tom’s weight loss is unlikely to be as a result of growth hormone.  Prof feels that we need to look into Little Man’s gut.  This is something I have been questioning for a very long time, so is worth investigation.

More phone calls, to find the quickest way to an appointment.  We have not seen the gastro-enterologist for quite some time, so it may well need a referral from the GP again.  I’m hoping that my phone call to the feeding clinic may provide a short cut!  We will see.

In the meantime, while the growth hormone question has more or less been put to bed, a more fundamental one about Little Man’s body has been raised…

More waiting!



Learn To Love Food

Food Fun For Feeding Therapy and Picky Eaters

Stories with Sam

Stories about our son Sam, his disability, our family and our lives. Sam is 7, loves stories and has cerebral palsy. I am learning to be his ally.

Yvonne Newbold

Doing whatever it takes to make life easier for special needs families and the staff who work with them

Charlie Turtles Shares

Live What You Love With Ease And Fun

Eli Glasman

Site of author Eli Glasman

The Adventures of Fanny P.

...because life is just one big adventure...

Fusteratedreader's Blog

Reading one word at a time

Cross Stitch Bobobitch Mononitch

Translation: One Bohemian Bourgeois Gal with an Urge to Cross Stitch

Ramblings of a KJ

Grant me the serenity to accept the things I can not change; the courage to change the things I can and the wisdom to know the difference.

Cheaper by the Dozen and Get One Free

untangling this thing we call life...

Gluten Free Gobsmacked

...sharing everyday recipes from my gluten free kitchen with a side of life.

Chewy Pickle

Artsy fartsy and completely gluten free!

Durga's Toolbox

embracing special needs parenthood with courage, compassion and joy

Handmade Christmas Project

Spreading holiday cheer one craft at a time

Gold Can Stay

"The golden moments in the stream of life rush past us, and we see nothing but sand; the angels come to visit us, and we only know them when they are gone"--George Eliot

Thoughts

thoughts at teatime...

%d bloggers like this: