Friday, 29 April 2016

The Book of Experience

This week, Group b Strep Support has launched the "Book of Experience" - a place where families who have been affected by GBS infections can share their stories.  Until now, this has been an option on the various social media platforms, but this is a new initiative to be able to do so directly on their website.

The charity asked if a brief version of Adam's story could be featured on the front page of this and I was delighted to give permission.  If you or anyone you know has been affected by Group b Strep, please do point them in this direction as every experience matters.

You can find the link here:  The Book of Experience


Sunday, 3 April 2016

The Painful Side

A normal sized Thomas,
next to Adam's large one
Last week, I posted a birthday letter to the boy I love and many people told me they were touched by the tenderness in it.  This week, the picture is painfully different - currently I have three bruises on my arm, two on my leg and two on my back - and those are the aches that are visible.  Adam's Dad has a lump on his head and an equal assortment of bruises.  All of these have been inflicted by Adam in moments of anger, frustration, attempts to communicate or play and sensory seeking behaviour.  As I sit writing, I'm constantly stretching my aching back as Adam was kicking and punching me repeatedly yesterday.

This is the painful side of caring for, and loving, a child with autism.

As a matter of course, whenever Adam has a medical appointment, we remove his shoes and trim his fingernails before the appointment so that when he kicks the doctor or nurse, it hurts less and when he pinches the arm of someone examining him, he can't break their skin with his nails.  And before you ask, is this "naughty" behaviour and do we "allow" it?  No and no - absolutely not.  When Adam kicks, pinches or hits, it's usually an effort to communicate because he does not have the words to do so - kicking and hitting people examining him is his attempt to say, "No!  I don't like this!  I want you to leave me alone!"  Is it an acceptable way to communicate?  No.  Absolutely not.  

During medical appointments there is always at least one parent (two where possible) holding him down, restraining various limbs and working both to soothe and communicate with him by explaining what is happening with speech, signs and, where possible, comfort.  For example: we prepare him for appointments by saying and signing, "Adam" (point to right thumb for A) "We're going to see" (two forefinger by eye and pointing forwards to sign see) "the doctor" (trace a cross on the top of the left arm).  We do this repeatedly, with picture symbols where possible and continue reassuring him using these types of methods throughout the appointment - along with just as many apologies and explanations to the medical staff who are tending to him.

At other times, the violence is the temper and frustration that can be triggered by not being able to communicate what he wants.  We were driving yesterday, thankfully slowly as we were leaving a petrol station, and suddenly Adam threw a very large plastic Thomas train at Chris's head - and by large I mean about a foot square.  It bounced off Chris's head as he screamed and grabbed his head, before continuing it's journey forward onto the dashboard where it was stopped by the windshield - thankfully without damaging it.  Immediately braking and putting on the hazard lights, I checked Chris's head to make sure there was no blood and give him a chance to be sure he was ok.  Behind us, two cars were waiting, the front of whom was shouting and gesturing at us for blocking the road.  We have tinted windows in the motability car so he would not have seen what was going on and I was more interested in making sure Chris was ok than I was in reassuring a grouchy driver.  Thankfully, apart from a sore head resulting in a bump, Chris was fine.

We still don't really know what triggered the outburst but suspect Adam had seen Chris with his mobile phone (he was using it as a satnav) and wanted to have it to play games on it.  He had probably been pointing at it in the backseat but of course, we couldn't see this, so in frustration he threw the train at Chris to get his attention.  Adam doesn't understand consequences and, while I obviously have no wish for Chris to be hurt, I was immensely glad that on this occasion, I was driving and Chris was the passenger.  If it had been me hit in the head with the train, the consequences could have been very bad indeed.  

As a result of this, it makes perfect sense that Adam should only have soft toys to play with in the backseat, except that he isn't remotely interested in soft toys and if he's bored, that can trigger a meltdown.  Now of course, safety comes first and there's no way I'm now giving Adam large plastic toys in the car but it's still a dilemma of how to keep him happy and calmly occupied without putting anyone in danger.

Sometimes, the kicking and punching or "hard pushing" (as in putting all of his weight behind trying to push us) is mimicking behaviour.  If Adam sees a cartoon character on one of his videos singing, "there were five in a bed and the little one said, roll over!  roll over!"  Those cartoons push each other to trigger the rolling over, so Adam mimics that with us except that he puts all of his weight behind it - sometimes using his hands, sometimes running up to us from behind and pushing on our backs, sometimes if we're sitting down, getting behind us and bracing his feet against our back to push/kick us.  All of these things happen very quickly, often not quickly enough for us to brace, protect ourselves or move him away.  At other times, the same actions are sensory seeking behaviour - where one child may gently push or lean into a parent, an autistic child can need to perform the same action with a massive increase of force and strength to get the same sensory feedback - and Adam demonstrates this.

The problem is that Adam doesn't understand consequences and he also doesn't understand his own strength - his cognitive understanding is that of an 18 month old toddler, but as a very tall boy, his strength is equivalent to that of an 8 year old.  No matter what method we try - from speaking to signing, to telling him off, to restraining and physically stopping him from the action, Adam doesn't understand.  If anything he gets more frustrated and violent when we try to stop him because the need in him to play / communicate / mimic or seek sensory input hasn't been met so he does it again, and again, and again.

And so, we ache.  We're bruised.  We have bumps.  Scratches.  Chris even had a black eye once.  Sometimes autism can be beautiful when Adam does something amazing or touching, but often (much more frequently) autism is painful and our bodies bear the marks to prove it.   This is what unconditional love look like.