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."


Anonymous said...

amazing wonderful a wee joyful tear brought to my eye x

Anonymous said...

What a fantastic account of all you and Matthew went through. To hear any child speak/sing is wonderful, but to hear your child speak/sing after learning how to do it, seemingly forgetting how to do it, then doing it all again is MAGNIFICANT....My son is Autistic too. I will always enjoy hearing his voice...forever x

Anonymous said...

Hi, I am Laura, mother of a five year old autistic boy. Your story is really inspiring, thank you so much for sharing it. A big hug!

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