Friday, 15 June 2012

My Life With Autism

Debbie has written a few guest blogs for us before, which were insightful and moving and this one is no different - have your tissues at the ready!

"Sign it, Say it, Sing it

Aged one, Matthew could sing. 

He couldn’t really sing the words, but could hold a tune beautifully.  His favourite song was The Wheels on the Bus and he'd hum away tunefully to himself while spinning the wheels of his toy cars.  After bath time we would always sing Twinkle Twinkle and Baa Baa Black Sheep while settling him down to sleep.  He could join in with the tunes and it was a joy to hear.

Aged two, Matthew stopped singing.

Sometime after Matthew's second birthday, in amongst the turmoil of the endless waiting for appointments, the repeated answering of the same questions, the sleepless nights and the desperate hope that it was all a mistake, I noticed that he was singing less and less.  In time Matthew had stopped singing altogether. 

I am a music lover.  I guess most people are.  Music is, for me, the background of life, constantly there in its many, many forms.  And Matthew loves it too.  He has always responded well to music, from classical to dance to nursery rhymes and most things in between.  But before Matthew was three he had learned, and then seemingly forgotten how to sing.  This was one more blow, a soft but meaningful blow at a time when they were raining down.

Song provides one of the best and most enjoyable ways to learn.  If we know the tune, the words stick too.  We remember and understand.  So song is, of course, extensively used by parents, speech therapists, play workers, nursery staff, school staff and everyone involved in helping our children to learn.

 And although no longer singing, Matthew never stopped responding to song.  Songs became an integral part of the strategies that we learned to enable and encourage Matthew to communicate.  Reward an achievement with a favourite song.  Sing a song after Matthew has co-operated with getting dressed.  Encourage him to use PECS (Picture Exchange Communication System) to request the songs he loves.

Anyone who knows Matthew will know that he enjoys food at least as much as he enjoys music, so of course food was, and remains, a huge motivator for him, and we have utilised his love of food in exactly the same way.  But that’s another story...

One of the excellent strategies given to us by speech therapy was to sing a favourite song and stop before the last word to encourage Matthew to fill in the blank.  He began to communicate his desire for the word to be sung by eye contact, gesture or even vocalisation.  Communication in any form is wonderful.  At some point along the way, this ceased to be a strategy.  It became the natural way to interact, always pausing, always withholding something to give as a reward for communication.  And in turn, Matthew would reward us with fantastic eye contact, his own particular gesture, vocalisation and even, on joyful occasions, the word.  But never the tune.

Matthew’s lack of singing caused me a niggling pain over the years.  Never overwhelming, but always there.  He used to sing so well, perhaps one day he would sing again.  I have learned over the years to always hope, never expect.  And so it was with singing.

From the age of three, Matthew was using PECS as his main form of communication.  He was also exposed to Signalong, which is a very simple sign language.  Signalong is used by professionals working with children with additional needs here West Lothian.  It reinforces the spoken word and children who struggle to communicate verbally can often pick it up readily.

Aged five, Matthew was making certain gestures and these turned out to be the actions to songs.

Aged seven, Matthew’s repertoire of signs suddenly expanded and he could soon do the actions to many songs.

Signalong became Matthew’s preferred method of communication. I attended Signalong classes in order to keep up.  I was often describing gestures Matthew had made in his home-school diary to find out what he had been requesting. But he didn’t stop at requesting – he also began signing to point things out, to tell me things. Now, when I paused during songs, Matthew would sign the next word. 

Aged eight Matthew’s speech began to develop. 

I believe that signing was a significant factor in Matthew beginning to speak, as it really showed him the power of communication.  He still uses signing along with his speech and if I can’t understand the word he is saying, I can usually understand his gesture.  As Matthew’s spoken vocabulary expanded, he began to say the next word when I paused during his favourite songs.  He could request a song he wanted to hear verbally.  But he still didn’t sing the tune.

Aged nine, Matthew is singing again. 

I do not know how he learned to sing again.  But gradually, signing and speaking the words has become singing the song.  He is always in tune and so I always know what song he is singing.  I can sing along him to help him to learn the words.  He sings away to himself all the time and his repertoire is expanding rapidly.

And I cannot describe the joy I feel every time I hear Matthew sing.  It is the most beautiful sound I have ever heard, and well worth waiting seven years for.  The best things are always worth the wait."

Monday, 11 June 2012

My Life With Autism

We are always happy to publish guest blogs from our supporters around the UK. These are people living with autism who want to share with you a little about their life. Here Julie-Anne talks about her son Paul: 

"Paul was born in 2001 in Antrim hospital N.Ireland after a horrendous 30 hour labour and an emergency caesarean, he then spent the first week of his life in the special care baby unit with congenital pneumonia and a heart murmur. He then was taken back  into hospital at 4 weeks old with severe chest and breathing difficulties. At one point his heart stopped and he had to be resuscitated.

Paul then spent the first 7 years of his life in hospital on a 3 monthly basis with severe breathing difficulties. He didn't walk or talk until he was 2 years old and was allowed to start nursery at 2 to overcome and help with this. We were living in N.Ayrshire at the time.

Paul had a speech therapist until he started p1 and was always different from other children as he was very reserved and easily upset.

We moved to West Lothian when Paul was half way through p1.

Paul was constantly getting into trouble when he was at school for either not joining in with activities or becoming upset and having tantrums and we never knew why. In p4 Paul was referred to the Educational Psychologist on my request for observations, I was told that he was fine and there was nothing wrong with him and he was referred to a Speech Therapist to help with his language skills.

One day when Paul and I were at the Speech Therapist she asked me if I would mind if she referred Paul for testing as she thought he had autistic traits. I was very surprised and shocked at this as my idea of Autism at the time was the film Rainman. However I agreed to testing and a few months later after several visits to different doctors and specialists and a lot of form filling Paul was diagnosed with Asperger's.

I was very shocked and a little relieved at this as I now knew why my son was different from everyone else but I also felt like it was a case of 'here is your diagnosis now go and get used to it'. I would have preferred some support as I have no family near me.

The school when they were told of Paul's diagnosis took it with a pinch of salt and never offered us any additional support for Paul and told us we weren't entitled to any.

I then discovered a support group for other parent's like myself and discovered that yes we were entitled to help and support and I have been battling ever since for this.

In the past year Paul has overcome a few educational obstacles with the help of Autism Outreach and a few meetings with the Outreach team, the school and myself and  is now allowed  to use a laptop for extended writing and is also allowed to stay indoors at playtime if he wishes.

Paul is now preparing for his final year at primary school as he will be into p7 after the summer and has been identified for an Enhanced Transition and so the school, the outreach team and myself are working together to ensure we do all we can to help his Transition go well. I find this much easier than a few years ago as we are all working together on the same path to help Paul be all he can be.

I am hoping he get's the help he needs when he starts at the high school and he continues to do well."

Sunday, 10 June 2012

Some Exciting News From Act Now For Autism HQ!

We are absolutely delighted that one of our co-founders (and core group member) Anna Kennedy is on the Queen's honours list and will be awarded an OBE for raising autism awareness and setting up education and care facilities.

Anna has worked so hard over the years for the autism community. Whilst caring for her two autistic sons she founded and continues to run Hillingdon Manor and Baston House School. Anna and her team have created the largest range of specialist facilities in Europe and she continues to strive, she recently produced a DVD with legendary Pineapple Dance Studios (Step In The Right Direction) and last month she produced the amazing Autism's Got Talent show.

Here's what she said about getting her OBE: 

"Obviously I am honoured and my love for my sons and husband has kept me going. I hope to use this award to springboard improvements and changes in the world of autism and I will accept the OBE on behalf of all families who are affected by autism."

Congratulations Anna - we are very proud of you!