Friday, 25 March 2016

Dear Beautiful Boy... (Age 5)

Dear Beautiful Boy,

Today, you turned Big Boy Five and I love you more than ever.  It wasn't like your other birthday's before, mostly because today was also Good Friday and that means Reverend Mummy was a tad busy, but we still found time to celebrate you and your five whole years on this planet.  It's become a bit of a tradition to write you a birthday letter, and even though it's 10pm and so well after your bedtime (I can hear you rustling around through the baby monitor on the table beside me) it's still never too late to quietly whisper, "Happy Birthday Baby....I love you."

Today was the first birthday ever that you actually enjoyed opening your presents.  Something changed in you a few months ago and the packages that once were scary are now very "SPEEECIAL!  WOOOOOWWWW!!" as you tear into them.  Today, you were transfixed by your Jack in the Box, giggling away as you turned the handle, watched the clown pop up and then pressed him down before turning the handle again.  Each time he popped out of his box, you jumped and giggled.  The kaleidescope was a whole new world, even if it did take you a while to figure out how to work it.  Each new present was "SPECIAL!" and exciting and even though many parents take this reaction for granted, for us, it was a joy because positive reactions to presents are still very much a novelty.

Of course Mummy had to work today, but you came to Messy Church and made a beautiful Easter flower, "helped" to eat the chocolate mini-eggs before throwing away the shredded wheat nest in utter disgust (ug, healthy fragments in my chocolate!)  It was clear that you wanted to run around with the other children outside, but sadly, four broken bones in your foot prevented that.  I think you still had fun your own way. 

It was actually quite hard to say goodbye to you on your special day, even though Daddy was quite right to take you home once you started to scream.  I understand that birthdays are still rather uncertain things, and lots of other noisy children are very difficult to cope with.  You tried very hard to block out the noise by playing snooker on Daddy's phone, and kept grabbing Mummy's hand every time you saw me.  I think having us nearby helped you cope.

For the most part, it was a very positive birthday - a bit of manic behaviour, but no tantrums or meltdowns, no refusals to open presents and only a little bit of hitting.  For you, that was a very good day.  And yet, Daddy still quietly asked me why such a happy day was still tinged with a bit of sadness.  The sadness is less than it used to be - much less - the memories of those early days are blurred and softened with time, but I can still hear the beeps of the heart monitors, the quiet puff of the life support and watching the lines on the screen to make sure you were still staying with us.  The memories are softer now, but they're still there.

Today is a happier day, maybe even the happiest ever birthday simply because you enjoyed it and coped.  It was a good day.  We've come so far to be able to say that.

And now you are five.  In some ways, such a big boy, and yet in others, eternally two.  My beautiful boy, I love you so much and, as I say to you each night, I love you a little bit more than I did yesterday but not nearly as much as I will by tomorrow.  And so I kiss your head as you sleep, whisper a blessing over you, find Dumbles and tuck you in before creeping out of your room for the brief hours of rest before you decide that it's morning once more.  Perhaps it's appropriate that, this year, your birthday falls on the day when we remember that death precedes life and that death isn't the end, but just the beginning.

May you have many more beginnings in your life my darling, and may I always walk by your side to see them.  Happy Birthday my beautiful boy.  Five whole years.  Here's to the next five.  

I love you.


Wednesday, 23 March 2016

Autism and Broken Bones

The last thing I said to my husband before getting on a train to London, before my flight to Canada was, "keep my baby safe while I'm away!"  Two days later, the message that we needed to "FaceTime" revealed a very upset husband who had just returned from A&E with a plaster cast to his knee.  A morning at one of our local soft play areas and an awkward fall resulted in a broken foot and an expectation of six weeks in plaster.  It was of course just one of those accidents that happen in childhood, but there was an unforeseen complication because of Adam's autism and that, more than the injury itself, has been a real test for us all.

We soon realised that Adam makes absolutely no cognitive connection between injury / pain and the need to sit down or even limit his activities.  Now of course, it's hard to explain injury to any young child - that's a given - but Adam's brain works differently to that of many other children; he has very limited one word communication which is restricted to concrete things like "eat" "drink" and "nappy".  We have absolutely no way of explaining abstract concepts like "ow" "pain" or anything remotely like bones and casts.   

What's more, Adam genuinely doesn't understand why pain in his foot should stop him from walking / running and even jumping.  Over the two weeks since the injury, we have found him attempting to jump up and down on the settee (and jump off it onto the floor), stomping his feet along with one of his favourite characters on TV, and trying to run.  It's not that he doesn't feel the pain, because some of these things have occurred with tears streaming down his face, it's that he doesn't understand the pain, what it means or what he should do (or not do) as a result.  

This morning, we had a follow-up appointment with the Consultant at the hospital and new X-rays gave us a shock - originally we had been told that Adam had broken two bones in his foot, but today the Consultant said it looks more like FOUR bones.  So out of his five available metatarsals, he's broken four of them.  Thankfully, none of the bones are displaced and are healing well so we now have a goal of removing the cast earlier than expected.  But four broken bones should be incredibly painful, despite the medication he's on, it should make him willing to self-limit his activities - that after all is what pain is for, a signal from the body to the brain to stop or slow down.  

But whether this is about body-awareness, cognitive ability or communication skills, we genuinely don't know - maybe a combination of all three.  In the meantime, in an effort to protect his healing, Adam is spending a lot of time in his pram as it has a harness to keep him seated, we're carrying him whenever possible (and struggling with back pain as a result - he's too big for carrying!) and trying to give him lots of time with the iPad as he sits more frequently when watching TV on it....but certain programs have been banned like "Five Little Monkeys" (jumping on the bed...) for perhaps obvious reasons.

It's a whole new...and