Friday, 27 November 2015

Toilet Training

Adam came home from school with the most extraordinary news yesterday, while his teachers were changing his nappy, they thought he might just need a wee.  So they stood him in front of the school toilets, and obediently, he did so.  

For many children, beginning to understand their bodily functions is a normal and natural part of life that can happen as young as 18 months old.  But for a child with autism, like Adam, this level of understanding does not come naturally and, for some disabled children, it never comes at all.  There are plenty of children in Adam's school that remain in nappies up to and over the age of ten years.  Adam himself is nearly five.

For the longest time, Adam has shown absolutely no awareness of, or interest in, his bodily functions.  Toilet training simply wasn't a possibility and we had resigned ourselves to him remaining in nappies for an indeterminate period of time.  In this, we are immensely grateful that the NHS provides larger size nappies, free of charge, for disabled children as it is not possible to buy them in shops.  

But this message, sent home from school was the cause of so much joy and, never ones to push our luck, we decided to try him on a potty before his bedtime shower - and low and behold, success again!  

This means that we can now begin the next challenge which might just lead to some more development and maybe even eventually the tiniest bit of independence for our son.  In agreement with his teacher, from next week, Adam's school will begin to work on toilet training him and will guide us through the process of doing this with an autistic child.  It will mean new Makaton signs, new printed symbol cards to help him visually understand the process, and of course a great deal of patience as nothing in the world of autism comes quickly.  But this is a step we take with a great deal of excitement because it is one we honestly believed might never come.

Today is a good day.  :-)

Sunday, 15 November 2015

A Sad Day

Duchess
Yesterday was a very sad day for us, as it was the day we said goodbye to our dog, Duchess.  After many months of discussing it and going back and forth, we finally decided with very heavy hearts that we simply could not give her the home she deserved.  The decision reminded us, once again, of the cost of autism.

When we bought Duchess, she was an absolutely beautiful puppy and we very carefully chose a Newfoundland because of the incredibly gentle reputation of her breed.  We knew she would become one of the largest dogs around but were perfectly happy with this, as we've always had large dogs.  We were very hopeful that a gentle dog would be able to make a bond with Adam and be a source of comfort and companionship for him.  

Sadly, this was not to be.

As the months passed, it became clear that Adam was not bonding with Duchess.  She tried to be friendly with him, to encourage him to play, but he appeared overwhelmed by her puppyish enthusiasm and despite our best efforts to prevent it, he would regularly lash out at her.  He would kick her, slap her, punch her and even attempt to dig his fingernails directly into her eyes.  Duchess was so gentle that she never made any sort of aggressive move towards him, she simply tolerated his treatment of her.  We tried many, many times to teach him to be gentle with her but, as in so many areas, we simply could not make him understand.  In an effort to protect Duchess, she ended up spending a lot of time either in the garden or locked behind the gate in the kitchen until Adam went to bed.  We were so conscious that it simply wasn't the life we wanted to give her or the life that she deserved.

But we loved her and we didn't want to give up.  We kept hoping that Adam would become used to her, would stop mistreating her and that, at the very least, he might ignore her if he wouldn't bond with her.  There was just one day in the summer when something clicked in Adam's head and he spent a good hour playing with her in the garden.  She bounced around him and he laughed in delight...but then the switch flicked again and it was as though the moment had never happened.

It's not a pretty sight,
struggling to breathe
Added into the mix, both Adam and I have had many asthma attacks during this last year.  Even though I'm a lifelong, chronic asthmatic, I haven't had health problems this severe for a very long time.  But in the last year, I've been in two ambulances, A&E twice, signed off work for a total of two months and it's gotten to the point that the doctors had no more medication to give me - I was already on the lot.  Eventually, I wondered if I might be allergic to Duchess - despite never reacting to any of our previous dogs - and so I asked the doctor to run tests.  These confirmed that I do indeed have a "level three" allergy to dogs, which on a scale of 1-6 is only really moderate but with a severe underlying condition, it made me stop and think.  And, over the last six to eight months, as Adam was on more and more inhalers and nothing was actually stopping the wheezing and coughing, it prompted me to have a conversation with his class teacher. What she said was sobering.  She told me that every single day, Adam arrived at school wheezing but that throughout the day, his breathing cleared.  He always came home in good health.  She asked me whether there might be anything in the home environment that Adam might be allergic to...?   It didn't take long to put two and two together.

Eventually, after many conversations and even more tears, we made the heartbreaking decision that we needed to find a new home for Duchess.  Thankfully, with the help of my sister, we found her a loving family on an eight-acre horse farm who were looking for a new dog to replace their beloved pet who had died a few months ago.  From the moment we introduced Duchess, it was clear that she would be absolutely treasured and would have a fabulous life with them so we are very grateful to have found what we very much hope will be Duchess's "forever home".

But that didn't make yesterday any easier as we said goodbye to our big, furry friend.  And even as we watched her jumping for joy and gambolling like a tiny puppy around the pastures, we cried many tears.  It seems strange to say that the house seems quiet now, as we do after all have an autistic son who is never quiet unless he's asleep but there is an absence and we are very aware of it.  Both of us feel as though we've failed in many ways because we've never, ever rehomed a pet in all our years of having cats, dogs, guinea pigs and even fish, they have only ever left us for "the great kennel in the sky" as we gently call it.  But however hard and painful this decision has been, we also know we've given Duchess a chance at having the life she deserves with a family who will absolutely adore her.

But that knowledge doesn't take away our sadness at losing our friend.
Our last walk together

Saturday, 7 November 2015

NHS Maternity Review


"We will do everything in our power to make sure that what happened to you, 
does not happen to anyone else." 

Professor Sir Cyril Chantler, 
Deputy Head of the NHS Maternity Services Review

Yesterday, I drove to Manchester to participate in the NHS Maternity Services Review.  The session was facilitated by Bliss and Sands, the stillbirth and neonatal death charity.  Mothers who experienced either the death or serious illness of their babies before, during or soon after birth were invited to participate.  

It was a highly emotional day and many tears were shed as the women shared their harrowing stories, pain, trauma and memories of an experience that is widely believed to be beautiful but for far, far too many women ends up being quite the opposite.  

I went to share my story of the complications around Adam's birth including a pelvic split paralysing me from the waist down and Adam's life-threatening infection with Group b Strep Meningitis.  Even though I have shared his story many times, and always been quite open with the pain and grief of this experience, doing so again, still reduces me to tears.  

It would, perhaps, be easier to be private with his story, to file it away and focus on the beautiful boy who, thankfully and miraculously, survived.  But Group b Strep is preventable, it doesn't have to keep happening.  It can be stopped - if the NHS choose to start making women aware of the dangers of the infection and testing for the bacteria.  

So if, by sharing my story and Adam's story, I can make even a small contribution to the push for change in the NHS, then it is worth every single one of the 200 miles and every single tear it takes for me to tell it, no matter how many times I have to do so.

The good news is that, while the women's stories were many and varied, I was not the only one who shared an experience of GBS.  One woman came to the bereavement session because she had paid the ultimate price for not knowing she carried the bacteria.  Professor Sir Cyril Chantler made it clear that he very much wants the current situation on GBS testing to change and that he will be strongly encouraging the team to make recommendations in the final report in this area.

As he, and Baroness Julia Cumberlege left the meeting, Cyril thanked all of the women for their courage in participating and said those very moving words, "We will do everything in our power to make sure that what happened to you, does not happen to anyone else."   He sounded quite choked up.

I hope and pray that he succeeds.

In the meantime, please would you take a moment to participate in pressing for change?  

You can complete the online form to share your ideas on what needs to change here:  https://www.engage.england.nhs.uk/…/nhs-matern…/consult_view

You can also add your name to over 200,000 people who have signed Fiona Paddon's petition on change.org here:  https://www.change.org/p/nhs-provide-tests-for-group-b-strep-to-prevent-any-more-avoidable-deaths-of-newborn-babies

You could also write to your MP and ask them to support GBS testing on the NHS.  

Thank you