Tuesday, 26 August 2014

His Favourite Obsessions

Get a bunch of parents of children with autism in a room and it won't be long before the conversation turns to obsessions.  From bus routes to historical dates, bottle tops to stones, our children not only find them fascinating, but draw solace from them.  When Declan is engaged with his current obsession, he is calm and in a very good place.  So in this blog post I will outline Dec's Top 10 Obsessions over the last couple of years...

10.  Winnie the Pooh Lullaby Bear:  Most first time parents have bought them and most disgard them when they realise they are doing absolutely nothing to entice their children to sleep!  So when my mum bought Declan one I was scared she was just wasting her money.  However for about 3 years Dec would not even attempt to sleep without this bear.  It was part of his night time routine and he just wouldn't settle without it.  We learned to take it everywhere with us or suffer the consequences.  Little were we to know that this was his very first obsession and was a sign of things to come!

9.  The Washing Machine:  This was another early one for Dec and again seems to be a favourite with a lot of children.  If all went quiet when he was a toddler then I could usually find him with his face pressed up against the washing machine watching the clothes spin round and round and round and round....
8. The Swing:  From a very early age Dec has enjoyed going back and forth on a swing.  He would quite happily sit in a swing for hours on end if he found someone willing enough to push him.  During the wet winter months when the actual swing was unavailable, he would pester my husband to pick him up and swing him back and forth.  It was only when we became aware of his sensory needs that we realised just how much he actually needed this...quite smart that he was seeking it out for himself really!
7.  Happyland People:  Like a lot of parents we discovered Happyland from the ELC when our daughter
was young, and her collection just grew and grew and grew.  In preparation for Dec getting older we had bought cars and buses and fire engines, things that would capture the attention of any young lad.  However Dec's autism meant that he just didn't do "imaginative play" and the big collection of houses and vehicles started gathering dust as his sister got older.  What Dec did take a fancy to though were the people.  For a long time we would often see Dec wandering round clutching two people in each hand.  When he stopped he would line them up and get very excited.  We are now getting rid of our extensive Happyland collection, but keeping a good selection of the people!
6.  DVD's: DVD's used to be something that we bought a lot of.  I would look on EBay and Amazon for second hand bargains of the kids favourite programmes, knowing they would help keep them occupied when we really needed that break.  It was all
great for a while, until Dec found his next couple of obsessions.  He became more interested in the contents of the DVD case than the actual programme on the disc.  Very slowly we started to find the discs and the paper inserts separated from the boxes.  The discs were getting more and more scratched, and the paper inserts were ragged.  We would try and put them out of reach but my determined little boy would climb anywhere without fear to get hold of them.  In the end we abandoned any ideas we had about using them for their normal purpose.  Now Dec has "collections" of discs and paper inserts which he will lay out and marvel over for ages.  He even has his own dedicated shelf to house them!
5.  Opening & Closing Credits:  With DVD's being useless in our house, we put Netflix on to Dec's Ipad. Dec knows his way around his Ipad so this gave him a big choice of different programmes at his fingertips. However instead of watching full programmes, Dec has found a new obsession.  He loves the opening and closing credits of tv programmes and films.  Basically he loves the music.  He loves that the music never changes and the words remain the same every time he watches it.  And so he watches them and rewinds, watches them and rewinds, over and over again.
4.  Washing Products: Early on his life Dec was obsessed with the washing machine.  His latest
obsession is washing machine products - fabric conditioners and washing gel.  I only shop for these every couple of months, so usually have quite a few bottles housed over the washing machine.  Dec loves to take them down, and then take them all into the garden.  Here he either lines them up, or singles one lucky bottle out to put in the middle of the trampoline while he bounces round it!  I just love the simplicity of it!

And so now we get to the Top 3.  These are the enduring obsessions, the ones that have lasted years as opposed to days or months.  These are the ones that have just become totally synonymous with Dec, the ones that are right at the forefront of my mind when anybody asks what he is interested in...

3.  Hair:  Since he was a baby, Dec has been fascinated with, and found comfort in, hair.  His hair, my hair, his sister's hair - he ain't fussy - as long as it's long enough to twiddle round and round his fingers.  I fear that this obsession may have come from me.  I love stroking my kids hair and do it a lot to calm them down (and calm myself down too!).  Unfortunately this obsession took a turn for the worse, when Dec was pulling at his hair so much that he was pulling it out and getting a bald patch.  The OT was worried that he would damage the hair follicles and he would end up with a permanent bald patch.  So with great dismay we decided we would have to get his head shaved.  It was one of the hardest decisions to make but it had the desired effect in that his hair is now too short for him to play with.  Has he broken the habit though?  Nope - he just plays with mine instead!
2.  Numbers:  The first words that Dec ever muttered were his numbers from 1 to 10.  In fact for a long time, numbers were the only words that Declan spoke with any regularity at all.  From a very early age he has been able to count, recognise numbers and put them in order.  The first time I gave him a wooden playtray with numbers in it, he tipped them all out and put them in order across the floor.  He was two and I watched in awe as he lined them up perfectly straight muttering the numbers as he did so.  I thought it was going to lead on to bigger things, but unfortunately it hasn't developed much from there.  But reciting numbers calms him down.  He likes the regularity of them.  He likes that 4 always comes after 3 and before 5.  In his world that uniformity is important.  For a long time though, his obsession was only seen at home and not at school.  It was only towards the end of last term that he started to show his teachers how much numbers mean to him.  As he moves on to a new school, I am hoping this is one obsession that can be harnessed and used to unlock something more.
1.  The Wiggles:  Number 1 just had to be The Wiggles.  They have influenced Dec's world so much that I wrote a separate blog post about this particular obsession.....  He has had obsessions with other programmes such as Barney the Dinosaur, Mr Tumble, Yo Gabba Gabba, but none of them has completely taken his interest like The Wiggles.  He has accepted the many different line ups, and now we hear him singing along to the songs and doing the actions too.   Sadly, if you sang me the first line of any Wiggles song I could probably sing the rest of the song for you too!  He even gets me to introduce myself as them..."Hi We're the Wiggles, Hi I'm Greg, Hi I'm Anthony, Hi I'm Jeff, Hi I'm Murray".  He tells me what to say and I have to wave my hands and copy him.  He loves it!  His school even introduced some Wiggles songs into nursery just to see his excitement, and also to calm him down when he was upset.   One day, I would love to take him to see them live, I'm just not sure he would cope with it at the moment.  Until that time I remain happy with the positive influence this particular obsession is having on Dec.

Wednesday, 6 August 2014

Did he really just do that?

I love it when Dec does something that totally surprises us, and it's happened a few times in the last couple of months.  Just to recap, Dec has severe autism.  He is pretty much non-verbal and his development age is between 8 and 20 months.  We have learned to cap our expectations so as not to be disappointed, which probably makes those times when he does do something amazing, all the more special.

The first thing is to do with emotions and understanding of the word "bye bye".  A couple of months ago, Dec came and stood in front of me and said "Hello" (well "Heyo" was how it came out!).  Feeling very excited as he'd never done this before I said "Hello" back.  "byebye" he said in return.  So I said "byebye" and waved and he went over to his dad and performed exactly the same routine.  This went on and on for days.  He loved it and we loved it even more!  We were actually having a little two way conversation with him.  Yes it was totally to script, but he was understanding a little of how a two way conversation works.   In the last two weeks however, he has blown us away with seemingly understanding what goodbye can mean.

Every morning when my husband leaves for work, Dec gets extremely excited that he will be able to use his new word "byebye".  As soon as my husband starts making the rounds to give kisses goodbye, Dec runs right up to him, looks him in the eye and shouts "byebye".  He says this several times and giggles and shrieks excitedly at how this is making him feel.  Even when the door is closed behind my husband, Dec shouts "byebye" one more time and bursts into hysterical laughter.  He absolutely loves this little exchange.  We thought he was just reciting the script and not really understanding what "byebye" meant.  That was until his last day at nursery a couple of weeks ago.  Dec has loved his nursery, and he had formed the most beautiful bond with his key worker.  From the first day when he worked out that her hugs were just as good as mummy's hugs, he never looked back.  She became his school mummy and I absolutely loved it.  When he came bounding out of nursery with her on his last day, I said to Dec "Say goodbye to Miss H" expecting the manic waves and giggles that we usually saw with his dad.  Instead Dec broke down in tears, he was absolutely distraught and there was no calming him down.  Somehow, in some way, he knew that he wasn't going to see this wonderful woman anymore and he was really upset.

Was this a total fluke?  Well I have to say I did think so, until we went to visit my family last weekend.  We live a good couple of hours drive away from my family so we only see them once every couple of months. After a few hours my mum got up to leave.  "Say goodbye to nanny" we said to Declan.  Once again, the tears flowed.  Dec was distraught and it took me a good half an hour to calm him down.  Now behaving in this was once could be a fluke, but the second time makes me think there is definitely more to it.  Dec does seem to understand the difference between saying goodbye to somebody like his dad who he will see again shortly, and saying goodbye to somebody who he won't see for a long time.  And to top it off, he is experiencing all those emotions that I saw his sister display when she was his age and we used to leave people who she didn't want to leave.

And so we move on to the next amazing thing.    This happened at MacDonalds where we got a glimpse of his mischievious nature and how he is much more aware of the impact of his actions then he lets on.  Dec was sitting next to me and we both had fries.  He had finished his fries but wanted more and so he helped himself to mine.  But he didn't just take them from my carton and put them in his mouth.  He transferred them to his carton before then eating them.  But its what he did next that showed how switched on he is.  His sister went up to the counter with his dad to get ice cream.  Dec had finished his drink and again wanted more.  I watched in amazement as he picked up his sisters bottle and shook it.  He obviously felt it was half full and wanted it.  Now I would expect him to just take the bottle, and he did do that.  But he also picked up his empty bottle and put it in front of where his sister had been sitting.  He effectively switched them so at first glance she would think she still had her drink.  Now that shows hidden depths if you ask me!

And finally, he has also shown us how he can work a crowd and get people doing exactly what he wants them to do.  It started at nursery a couple of months ago.  His key worker told me that he had taken her hands and started clapping them together.  He then ran over to another teaching assistant, took her hands
and got her clapping to the same rhythm.  They clapped together for a while and then one of them decided to clap out of sync.  Straight away Dec went up to her, took her hands and got her clapping in rhythm again. He continued to do this over the next couple of weeks, slowly dragging more and more teachers into his little clapping orchestra until at one point he had five of them all clapping together.  As before, if one of them stopped clapping or changed the rhythm, he was straight there making sure all was well again.  A conductor in the making maybe??

In a neurotypical child, these things are small, but for Declan they are massive milestones.  These are beacons of hope.   They show us that he probably understands more than we give him credit for.  They give us an insight into the boy that lies within and I'm not ashamed to say that it excites me and fills me with immense pride.  We are told to never judge a book by its cover, and that is something that most of us do, especially with disabled children.  These small acts are little signs that you should never write anybody off because even the most silent of children has hidden depths...

Thursday, 10 July 2014

(Shortlived) Adventures in Toilet Training!

Dec is almost four and a half years old, and still in nappies full time.  A few weeks ago, I decided that maybe
now was the time to start trying to potty train him.  Was Declan showing any signs of being ready for this mammoth task?  Not in the slightest.  So, you may ask, what on earth prompted me to make such a foolhardy decision?

If I am absolutely honest, it was total peer pressure which I felt was coming at me from a number of different angles.  But when I say peer pressure, it was totally perceived on my part, not directly made by anybody at all!  Dec is in a specialist nursery with 7 other boys who have autism or communication difficulties.  When they all started there together last September, only one of them was toilet trained.  However as the months progressed, it seemed that a few more of the mums were taking the leap with their sons, and some were having some success too.  One mentioned to me that she had watched a video on TED, and the speaker had said that 3 is the ideal age to start teaching them as the older they get, the more ingrained the behaviour is and the harder it will be for them to change it.  She had been relatively successful with her son too and so it gave me hope.

I was also beginning to feel very, very self conscious about the fact that my 4 year old son was still wearing nappies, particularly when I was around mums who didn't have a child with autism.  For me, Dec being in nappies is completely normal and actually fits in with his developmental age of about 24 months.  But he is four and a half, and in the neurotypical world that would be a very late age to still be in nappies.  When with my friends, I feel the need to explain why Dec is still in nappies.  How do you explain to a child who doesn't understand verbal communication that he needs to pee in a potty?  How does a child who can't talk to us tell us when he needs to use the potty?  In fact how can we explain to him what the sensation will feel like so that he knows he needs to go?  How can you make a boy hate the fact that his pants are wet because he hasn't used the potty, when actually he doesn't really care at all!

And I guess the final push came when Dec's new IEP was sent home from school.  I had mentioned to his teacher that I was thinking about starting toilet training, and so they had included it as a target on his IEP. Well that's that then, I thought, I'm just going to have to give this a go!

I had been spurred on by two tiny glimmers of hope.  Looking back I can see I was totally clutching at straws, but I needed something to cling on to!  Firstly we had had a couple of dry nappies through the night, which was highly unusual for my drink swigging son.  And secondly, we had had success a few weeks earlier when we had had to provide a urine sample for a hospital appointment.  I had placed him on the potty and he had duly done what he was supposed to do.  Was this a sign that maybe he was ready?

Well if I'm going to be brutally honest then sadly it wasn't.  Not in the slightest.  Day 1, we got home from the school run and I changed his nappy for pants.  I'd been advised to go straight to pants and to avoid pull ups as that just confuses them, and they also need to feel (and hate) the sensation of wet pants.  I set about putting him on the potty every 10 minutes, just for a few minutes, so he got used to the whole experience.

The first stumbling block materialised.  The potty was too small!  Well to be fair, we had bought this potty when he was about 18 months old.  Filled with high expectations after he had hit some of his other milestones early, we had bought the potty early just in case.  Six months later, after we realised Dec had autism we realised how half baked those expectations had been, and the potty had been gathering dust in the bathroom ever since. And so my husband went off to Mothercare and bought a padded toilet seat that we could fit on top of the normal seat.  It was a perfect fit.

And so for two weeks, I tried, very unsuccessfully, to teach Dec to use the toilet.  I would keep putting Dec on the toilet.  He would wait until he got off the toilet and then "pee".  It was an endless cycle of fruitless trips to the toilet, followed by mopping up and changing clothes.  I was getting absolutely NO indication at all that he was actually ready for this.  In those two weeks, this is what I have learned.

1. Dec did seem to understand what I meant when I said "Declan, Toilet".  He recognised the phrase and would take himself off to the bathroom.

2. He was quite happy to sit on the toilet.  He was often quite fidgety but would stay there for a couple of minutes before protesting and getting off.

These are the only two positives...the rest doesn't make such good reading!

Although he recognised the phrase and took himself off to the toilet, he didn't understand what he was meant to do when he got there.  I actually think he thought it was just an opportunity to sit down for a couple of minutes.

In two weeks, he never once went for a pee in the toilet.  He would always do it, literally minutes after getting off.

He is not in the slightest bit bothered by the feeling of wet pants, or wet socks and t-shirt either.  In fact, if I hadn't noticed and changed him, he would have been quite happy to wander round like that for ages.

Two weeks in I decided to reach out to other mums of autistic children.  I asked my friend at school what she thought I was doing wrong.  She asked me whether the school had thought Declan was ready.  She had felt pressured to try herself because the teachers kept telling her that her son was ready.  Every time his nappy was wet he would take it off.  Well no, the teachers hadn't told me that they thought Dec was ready, and the only time he would take off a nappy is if it was so full it fell off him!  In an attempt to gather more ammunition I turned to my Facebook Group and asked what the mums there thought.  Aside from one mum who was encouraging me to keep trying, the overwhelming majority were telling me to wait till he is in school.  The schools have tried and tested ways of achieving the impossible.  At this point, I should say that Dec has got a place in a specialist base for autistic children, not a mainstream placement!

And so, weighing up all the evidence, it was totally apparent to me that Declan really wasn't ready for this, and maybe I wasn't either.  I won't give up completely.  I will continue to get him used to the toilet, but in a more relaxed way rather than a full on crusade.  In that way, maybe next time when we try, our toilet adventures won't be so short lived!

Wednesday, 2 July 2014

Trying to see the future?

A young lad sat in the reception area of where I work recently.  He had autism.  I knew this because me and his mum have discussed our boys and their autism numerous times.  If I didn't know that he had autism, I don't think I would have guessed, but because I knew he did I found myself watching him.  I don't know if this is a normal reaction from a parent of an autistic child, but when I see other children with autism I can't help but watch them.  I'm drawn to them like others are drawn to their favourite soap opera. Especially if they are older.  I think I try and look for glimpses of what the future holds for us with Dec.

But getting back the boy in our reception area, as I say I began watching him whilst I chatted with his mum and it was only then that I saw the giveaways.  She was talking to him in very plain, straightforward language. Very direct and to the point, with no room for misinterpretation.  They had a conversation about people's accents, and his mum commented that although they had friends with very distinctive accents it was unlikely that he would have noticed.  He agreed.  At one point his mum left us briefly, and he started talking to me, well talking at me really.  He told me how he had hurt his leg, and how his dad had hurt himself too, both in very great detail.  He then went on to talk to me about his Disney Infinity collection. His eye contact wasn't quite there, but he talked very well.  He was the most gorgeous boy who really did give me hope for the future.

But I have to say my encounters with other autistic kids and adults don't always leave me feeling so positive. A month or so back, we were visiting family for the weekend.  Me and my husband were given a rare opportunity to go and grab a quick coffee - just an hour away from both kids together, but a chance that we grabbed with both hands.  We had just settled ourselves at a table we had struggled to find, when a bit of a commotion caught my eye.  A young lad, about 14, was trying to head for the door and was being held back by two adults. They were trying to calm him down a bit, and eventually led him towards a table.  I should have stopped watching at that point, but my autism radar had switched itself on, and I couldn't help but glance over.  And as I looked over I saw that this young lad had so many of Declan's mannerisms, but Dec is 4 and this boy was 14.  Every now and again he would clench his body and moan.  His speech was obviously limited, if he could speak at all.  He was sandwiched between his parents at this point, to stop him from doing a runner, and he obviously loved hugging because he kept hugging and kissing them.  I have to say the three of them looked extremely happy.  He looked liked he was loved and that his parents were totally supporting him. But it wasn't long before I could feel tears stinging my eyes, followed quickly by a steady stream of tears running down my cheeks.  I didn't have to say anything to my husband, he just knew. If this was Declan in 10 years time, then he would really be no different to how he is now, just taller.  That precious 60 minutes that we had been given had been whipped away in an instant by my worrying.

On another occasion I was in the queue at a local Tesco Express.  There was a much older man in the queue in front of me, he had autism and he was with his carer.  When I say much older, I mean he was about 50-55.  They both approached the self service checkout area, and as the man scanned his goods he let out a very loud moan.  I actually smiled as the noise reminded me so much of Declan but then I noticed that the whole queue had turned to look at him.  I realised that for a split second I had thought that a grown man moaning at a checkout was completely normal, purely because I hear that noise constantly every day.  The reaction of everybody else brought me back to reality, and once again I wondered if Dec would still be making his moaning noise fifty years from now.

Early intervention is key.  This is what every parent of a child with autism is constantly being told.  The earlier you recognise that your child has autism, and get them the support they need, the greater chance they have of changing those behaviours that make us worry.  And I saw evidence of this when I recently looked round a specialist autistic base in a local primary school, the very base that I am hoping Dec will get a place at.  Declan is non-verbal and his fine and gross motor skills are severely delayed.  He can't hold a pen properly and shows no interest in making marks.  His academic age is somewhere between 8 and 24 months.  The Headmistress told us that this was typical of the children that they took at the base.  I don't know what I was expecting as I looked round, I have never really given much thought as to how Dec will fare academically because it just hasn't seemed right putting any expectations in place.  But my visit changed my outlook completely.

In the reception class, the boys were learning how to make a jam sandwich.  Maybe not something to get
overly excited about I know, but watching non-verbal boys following instructions was amazing to me.  As we went from class to class I was struck at how relaxed the children were, and just how quiet the children were. I think I was expecting to be greeted by six loudly moaning boys in each class, but I don't think I heard one moan the whole time.  As we got up to the older years we walked into what was obviously a science lesson. The teacher had a tank of water and several objects lined up to drop into the tank.  A blackboard had a list of the items on it, and the boys had to say if they thought the item would sink or float.  As I heard the boys all guessing,  I began to fight the tears.  As we walked to the next classroom, the teacher pointed out the kids work that was on the walls.  The kids had written descriptions on each page.  We got to the next class as exercise books were being given out.  "Can they all write?" I asked.  "Oh yes" was the reply.  At which point, once again the tears streamed down my face.  But this time tears of hope.

I can look and look at other children with autism, but I will never get any answers as to how it will be as Declan gets older.  As a parent of an autistic child, all you can do, is fight to give them the best education and support possible so we give them the strongest chance in life.  What I do know, is that we will love Declan no matter what, so I think I will stop looking at the future and what it may hold, and concentrate on what is important now.  And after finding out that Declan has got a place at the school I looked round, things certainly look brighter...

Wednesday, 4 June 2014

Our Version of the Wonka Golden Ticket

I've been asked by my son's teacher to do a talk to the new parents information evening for those whose children will be attending the school from September.  I actually feel very honoured to have been asked, and it's really got me thinking about what our expectations were before Dec started there, and what the reality looks like.
I know, so well how they will be feeling.   Shortly after we first suspected Declan had autism people started mentioning a nursery which I shall call Butterflies from here on in.  At that point nurseries hadn't even entered into our orbit, we were still trying to get our head round what was happening to our family.   It also sounded way out of our reach – like the holy grail of nurseries for children with social communication difficulties.  But as the months passed by, and more and more people mentioned it to us. we knew that it would be the best place for Dec.  In reality, it was the only place that we wanted him to go.  Our fantastic Portage worker put our application forward to the totally over subscribed nursery and we waited.  And waited.  And waited.  The day the board met to decide on who would get places was possibly one of the longest of my life – but – we got one.  We were handed one of the golden tickets and Dec was offered a place at Butterflies starting from September.

So a year ago, I sat at the new parents evening clutching my golden ticket and wondering what really goes on in this school that everybody in the local special needs community raves about?  Was it as good a school as we'd been led to believe or was it hype?  Was the legendary teacher really the Willy Wonka of the autism world?   And almost a year on I know that it most definately was not hype, it was everything that I had heard – and more.

I felt the support straight away.  The settling in process was completely driven by Dec.  There are only 8 children in each session, all boys by the way, and their start dates were staggered to give the teachers quality time to get to know your child, and to give your child the time to get used to their new surroundings.  And it worked.  One of the boys in the afternoon class got distressed everytime the door opened and another boy arrived.  And so it was decided that his mum would bring him a couple of minutes later so he was the last one in – that stopped some of the upset.  This sounds little, but it was a massive thing to help the boy settle and give his mum peace of mind.

I even find drop off a lot easier.  Dec’s behaviour can look quite odd to most people.  He makes strange noises, tenses his body and flaps a lot.  But none of the other parenst looked at him with that pained quizzical look on their faces, in fact they all kind of nodded and smiled with relief!  We bonded as our kids ran around ignoring each other and making strange moaning noises.

In the second term we were invited to attend coffee morning talks hosted by a number of different professionals, most of whom worked with our children in the school.  This is seriously like our equivalent of “An Audience with….”  but obviously without the singing!  Every week for 8 weeks we had different themed sessions, such as encouraging speech and language, understanding sensory issues and how to play with your child.  They were delivered by therapists who knew and worked with our children.  So when we asked a question, they knew who we were talking about and had experience of their behaviour.  The parents there gave tips on what had worked or not worked for them.  Above all, you felt like you belonged.  You knew you wouldn't be outcast if you asked the strangest of questions, in fact there was probably somebody else in the room wanting to know the same thing. 

Therapy.  Therapy is a massive part of our world, and we have spent so much time going to different clinics to see different professionals.  And like everybody else we waited a  painfully long time for those appointments to come through too. Well at Butterflies it is all done in house.  Dec has speech therapy and occupational therapy as part of his normal school day.  He had a term of music therapy and also has Tacpac.  The therapy is then backed up by the teachers who incorporate their development plans into their daily routine.  Dec has “busy hands” – he always needs to be playing with something and for a while it was his hair.  He was pulling it so badly that he was getting a little bald spot at the top of his head.  The OT recommended regular hand massage and having twiddlers on hand for him to play with.  It wasn’t just recommended to the teachers, but also to us so that we could do the same at home.  You are working together, home, school and therapist as "Team Dec"!  

And then came the statementing process – a system that sparks fear into the hearts of any special needs parent.  I spent months worrying about Dec getting a place at Butterflies – he got the place – I took one day off worrying and then started thinking about primary school!

If your child will need to go to a specialist base, or need one to one support in a mainstream school, then you will need a statement of educational needs to enable them to get that.  For me, the statementing process was something I had never come across before and I had no idea what it involved.  One of the first things that was organised for the parents was a meeting to let us all know what was involved in this incredibly complicated and lengthy process.  As a parent, I have been kept informed every step of the way.  If I have had any questions with the process or the reports then they have been answered quickly.  Again, it has all been done within school time, and Declan has been observed by professionals who have seen him regularly in an environment which is familiar to him.  I always felt assured that Dec's future is being discussed by professionals who not only know your child well but want the best for your child too. 

And finally, but most importantly, what has Butterflies done for Dec. When Dec started there last September he was a very introverted little boy.  He is non-verbal and had very limited communication skills.  He made very little eye contact.  He didn’t seek out interaction with anyone apart from me.  He showed no interest in other children at all.  His self help skills were pretty non-existent.

We have seen changes in Declan which may seem small in most people’s world, but in his world the changes have been huge.  He is now using basic PECS to communicate with us, and he is copying words more regularly.  He is understanding more and more verbal instruction and showing me he understands by doing what I am asking.  He seeks out adult interactions, not just with me, but with our friends and family too.  His eye contact is so much better.  He is showing more interest in other children and has bonded so much with his older sister – she is over the moon to have her little brother take interest in her.  He can drink from an open cup and put his own coat on.  Small things maybe – but things we were never sure if he would be able to do.  Other boys in his class are now toilet trained, some are talking.  Each and every boy has made progress and it is a pleasure to see.

Most importantly, I have to say that Declan loves it there – he can’t tell me that because he is non-verbal – but he runs down that path every day.  He loves his key worker, and I have long accepted that in his eyes she is his “school mum”.  I rarely get a backward glance! 

Very early on I was told that early intervention was key.  If we could give Dec the best help in the early years then he would have the best chance as he got older.  Butterflies really is the best start we could have hoped for for Dec.  I realise that we were very, very lucky to get a place at the nursery that we did. We really were holding the golden ticket….

Friday, 2 May 2014

Everybody Clap - How The Wiggles Influenced Dec's World

When you talk to a mum of a child with autism, a lot of them will talk about their child's obsessions.  Dec's obsession, for some time now, has been with Australian Pre-School Group "The Wiggles".

 For anybody who hasn't come across them before, they were originally a group of 4 guys from Australia who have captured the hearts and imaginations of pre-school kids nationwide.  The original line up of Greg, Anthony, Jeff & Murray are experts at writing the catchiest songs for kids whilst incorporating child development theory.  They have been going for over 20 years now, do sell out arena tours across the globe, and have sold millions of albums and dvd's.  And yet, it was only by chance that they actually came into our lives.

A friend had given us one of those compilation dvd's, with a lot of different children's programmes on it.  The first show on it was an episode of "The Wiggles".  We put it on for my daughter, thinking she would probably love Angelina Ballerina or Bob the Builder, but it was "The Wiggles" that totally captured her attention.  It wasn't long before the whole family (me and my husband included) was singing along to the very catchy songs.  And so, we started to get a few other dvd's in, buying them cheaply second hand off Amazon.  After a while, Dec's sister started wanting to watch Dora & Diego, but during that same period Dec himself had become hooked!  And it wasn't long before we started to see a link between The Wiggles and Dec's behaviour.

Dec loves lining things up.  His sister calls the things he lines up "his collections".  He likes to have four items, and for a long time he was very, very adament about the colours of these items.  There are four wiggles, and each of them has a different colour jumper; red, yellow, purple and blue.  After a while, I noticed that every time he lined up four items it was these same colours, or as close as he could get to it.  Sometimes it was very easy to spot, like with My Little Ponies.  Other times it wasn't as apparent, but definitely there, such as he would line up Happyland figures and if you looked at their clothes the colours would be reflected in their clothes.  He would do it with plastic cups and plates, or building blocks.  The colours were always there - red, yellow, purple and blue.  I remember telling the pedeatrician this at one of his early appointments.  She looked at me slightly bemused until he picked out four toys in those colours and lined them up on her desk!

He would happily watch them over and over and over again.  We have so many DVD's and he must have watched each one endlessly - he never seems to tire of them.  He has even recently started to intently watch a documentary about how they got started and how their careers have progressed!  The intensity with which he sits and watches it makes me wonder if he actually understands what is being said?  This does however have it's downsides, as he loves them so much, turning them off has proved difficult in the past.  After going into the living room, turning them off, and seeing him go into a meltdown several times, we realised that we did actually need to give him notice that we were switching them off.  We now have to say "Bye Bye Wiggles" whilst waving goodbye to them, and then count down from 5 to 0 before turning them off.  It sounds ridiculous - but it works!  He even loves the dvd's themselves.  He regularly walks around clutching some very worn and scratched wiggles dvd's.  Again he likes to line these up, and he just seems to get so excited looking at them.  One got lost for ages.  I eventually found it under the sofa, and when I gave it back to him his face was a picture of happiness, and he walked round clutching it for hours.

He knows the songs, and if we do ever hear our non-verbal little boy speak then it is quite often when singing one of their songs.  A lot of the time the tune is more recognisable than the words that he sings, but every now and then I will hear some beautifully clear words being sung along to a Wiggles Song.  He will also point at their picture and say "Wiggles".  Although this may not sound like a lot, you need to understand that Declan just doesn't talk, so for him to respond must mean the motivation they give him is great.

The word "wiggle" has become synonomous with the band.  One of the teachers at his nursery caught me one day, and said that whenever they sing the song "Wiggly Woo" Dec gets really upset, and did I understand why.  It wasn't until I was driving home that I realised he probably thought they were going to be singing a Wiggles song when he heard the word Wiggle - and when it doesn't materialise he gets really upset!

I said in a previous blog  "Number Heaven" that I really believe that you can use a child's obsessions to unlock their world.  I recently read a totally inspiring article by Ron Suskind "Reaching my autistic son through Disney", which outlines how the author of the article got his non-verbal son to start talking, by communicating with him using the voices and puppets of his favourite disney characters.  It is a lovely article and I am really looking forward to reading the book when it is released.  In the meantime, it inspired me to try something with Dec.

Cleaning Dec's teeth has always been an absolute mission.  He will very happily walk to the bathroom with me when I tell him it's time for a wash.  He will climb on my lap without any hesitancy at all.  But as soon as the toothbrush goes anywhere near his mouth the battle would begin.  He would hold my arms back, hug his head right into my shoulder, or turn away - anything to stop that toothbrush from going into his mouth.  I spoke to the special needs dentist about it and she suggested using a slow countdown so he knows how long it is going to last, or playing him an Aquafresh brushing teeth song on my phone.  Neither had much success.  And so, spurred on by Ron Suskind's story, I decided I would try and improve teeth cleaning time using the Wiggles.  I made up a little song about cleaning teeth to the tune of "Everybody Clap".  Like most things I try with Dec I expected minimal success, but I was massively surprised when he grinned and opened his mouth willingly.  Again, I expected it to be a one off success - but he has continued to willingly open his mouth every day as soon as he hears the opening bars of the song!  I am now trying to find a Wiggles Puppet to see if I can replicate Ron Suskind's success with actual talking....or maybe that's just wishful thinking on my part!

Friday, 25 April 2014

10 Things to do after you find out your child has autism

Finding out that your child has autism is probably one of the hardest and most traumatic things that you will ever have to deal with.  Here are my personal suggestions of the ten things you try and do to make things a bit easier on yourself.

1. Grieve
One of the hardest things about autism is that your child is usually at least 18 months old before you start to suspect they have it, and are unlikely to get a full diagnosis until they are 3.  In that first 18 months most parents have already dreamed of the life that their son or daughter will have.  When you realise that your child has autism, it feels like that dream has been ripped into pieces in front of you.  It is understandable, and some would argue totally necessary, to grieve for losing the child that you thought you had.  The way you grieve is totally personal to you, but in my own experience the worst thing to do is to bottle it up and pretend everything is fine.  So find your own strategies and work through your feelings at your own pace.
2. Get a personal understanding of what autism means
The easiest thing to do when you find out is to get on line and start googling, and you should definitely do that so you have a better understanding of what it is.  My advice though is to stick to the factual sites.  One of the best is The National Autistic Society.  This site gives you the real facts and signposts places where you can get support.  It is tempting to start going into chatrooms, and I admit I did this.  But I stopped when I found that I was scaring myself reading about problems other parents were having that may never happen to us. Remember that no two children with autism are the same, and just because one child is showing certain behaviours it doesn't mean yours will too.  Go back to the chatrooms when you feel you have a firm grip on what autism looks like in your family.
3. Take all the support offered to you
When we first found out that Declan had autism, I was inundated with leaflets outlining activities, support and playgroups.  My initial reaction was to run and hide away and not go to any of these things at all.  But without a doubt, the best thing that I did was to bite the bullet and go to a special needs playgroup run by Portage.  I went from feeling totally isolated, to feeling very supported in the space of a couple of hours, as I was surrounded by parents who knew exactly what I was going through.  After that, I tried to go to anything that was offered to us, because the more people that see your child, the more doors will open for you.  And the more support you take up, the easier it will be for you to deal with.
4. Build a support network
I have to say, that the parents of special needs kids that I have met in the last couple of years are some of the nicest and most supportive people you can meet.  It is highly likely, that when you find out your child has autism, your circle of friends may not include anybody who is in the same position as you.  Making new friends is very daunting, but remember that most of the parents you will meet will be in exactly the same boat as you.  There is nothing more comforting than someone saying "Oh my son does that too" because it is probably a long time since you heard it!  Aside from the emotional support, word of mouth is the best way to find out about support you can get.  Most of the support I have got has arisen from somebody telling me about something and giving me the contact details.  So swap numbers or facebook details and start building that network of friends.
5. Start keeping all the paperwork
One of the first bits of advice I was given was to keep every bit of paperwork you are given, as you will never know when you will need to refer to it again.  You will definitely need it for any benefit claims that you make and to help you complete the myriad of forms that will now become part of your life.  You might want to start keeping a diary system too, so that you can keep track of when you need to start chasing up appointments or reports.  Also, take notes at every meeting you go to about your child, and keep hold of them too.  Keep it as organised as you can and somewhere you can easily get hold of it.
6. Be prepared to fight
Unfortunately when you are fighting for you childs welfare you can't always be a people pleaser.  In a time when cutbacks are the norm across all the Health Service, you may find that you are not automatically given something that you think your child is entitled to.  Never be rude.  Be polite and firm in what you are asking for, and if you still get nowhere maybe speak to an organisation like the Parent Partnership to see if they can help you.  When it comes to getting appointments with specialists, the waiting lists are long.  I was always told to ring up regularly to find out where you are on the waiting list, and make sure they know you are available for cancellations.  If you don't, then somebody else will, and your appointment will just keep getting pushed back!
7. Make sure you have all the benefits you're entitled to
Being the parent of a child with autism will have an impact on your financial future.  Finding childcare providers who are trained and willing to look after your child may prove difficult, and the sheer amount of appointments you will now have may mean working becomes more difficult.  You should therefore check to see if you are entitled to any financial help from the government.  I have found Contact a Family particularly good at giving you advice and helping you complete the application forms which are lengthy and very confusing!
8. Keep your own notes for future appointments
I learned the hard way that you need to be totally prepared for all appointments that you go to on behalf of your child.  Our first appointment was with a Speech & Language Therapist.  We walked in and sat down.  She said "So tell me about Declan" and my mind totally went blank.  The therapist then led the appointment and I came out kicking myself for not getting the information that I had wanted.  So before every appointment I go to, I write my own notes about the behaviours that I think are relevant, and I make a note of all the questions that I want to ask as well.  Don't be afraid to ask any questions, no matter how stupid you think they are.  Appointments with specialists are like gold dust, so make sure you get the most out of them.
9.  Make sure you take time out for you
Your life is never going to be the same, and if you let it, you will eat, sleep and breath autism.  My husband always said that if I wasn't feeling strong and in a good place, then I would be no good for our children.  It took me a while to admit that he was right.  So find those things that give you a release, whether it's exercise, meditation, painting or a drink with your friends.  Give yourself space to be yourself away from the autism, and you will find you have a lot more energy to give to your child.
10. Take one day at a time
My own personal piece of advice to you is try not to worry or think about the long term future.  You really never know what is going to happen and should not waste energy worrying about the unknown.  You will be more at peace with yourself if you just take one day at a time and deal with issues as and when they arise.