untangling this thing we call life…

Monthly Archives: August 2013


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.

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