CEAT

Oliver's Journey: By Michelle, Oliver's Mummy

Oliver's Journey: By Michelle, Oliver's MummyOliver's Journey: By Michelle, Oliver's MummyOliver's Journey: By Michelle, Oliver's Mummy
 
Diary - 10th April 2004 (Oliver aged 2 years 20 months)
"I've noticed Oliver seems to be 'grunting' a lot.  Start off by impersonating a scary monster, but this tone now used more often when communicating in general.  A lot of screaming today, seems to be when asked to do something he doesn't want (mainly food issues as usual) or when we refuse a request (video, biscuits).  Can occur up to 20 times per day - need to count this!  Also hand flaps when he doesn't want to do something and covers face."

So much has changed since those awful days of me coming home from work and enduring the screaming and crying.  Almost three years on and we feel confident and back in control.  I recall our first meeting with Kimmy and Mary in March 2004 and Mary commenting that we seemed to be afraid of Oliver.  How true.  We tiptoed around him, not wanting to set him off on yet another, long and aggressive temper tanturm. Oliver, 6 years this June, presented with autistic traits at 17 months.  As a parent you just know.  Long, severe and constant temper tantrums, delayed speech and no eye contact.  He toe walked, hand flapped and pulled at my hand to point yet he was 3 years old by the time he was diagnosed with a developmental delay of 14 months.  The diagnosis was a relief in many ways but we were devastated and cried like babies when we returned home.  We were screaming for help and were rewarded with long waiting lists and little information.
 
Diary - 13th April 2004
"Closed bathroom and bedroom doors this morning 3 times each before coming downstairs....Very difficult getting dressed - kicking, screaming, biting, nipping - struggled through it...Traumatic dinner time.  Used chocolate buttons as reinforcer.  Refused dinner and went wild when I removed the dinner and buttons.  Major tantrum then, followed by his usual 'quiet period', cuddling into me for at least 10 minutes."

Oliver had availed of the education authority's pre-school intervention service which consisted of one to one play for approximately 1.5 hours per week, from January to June 2004.  I have a lot to thank his teacher for.  Her good work made me realise that Oliver was eager to learn and capable of learning and had a serious amount of potential to achieve. We struggled on with a mish-mash of approaches such as PECS and TEACCH yet we were stuck in a vicious circle of mis-communications, frustrations and endless temper tantrums.  During this time I had searched internet websites and web forums and ABA kept coming up again and again.  So many success stories and the key was early, intensive, comprehensive, one to one intervention.
 
Diary - 26th April 2004
"Picked him up from the Robins.  Halfway home he started screaming and got out of his booster seat.  Tried to force him back in - very angry - then kept hitting Ellen in the back seat - she was terrified - screaming, then threw a metal car at her.  I feel he's regressing into a dark world where I can't reach or comfort him."

I was so aware that we had a small window of opportunity to work with Oliver and we needed to grasp it.  Then I heard about CEAT - the timing was perfect.  How lucky we were!  At last Oliver was no longer just a number on a waiting list.  They could provide a one to one intervention which was all about him, as opposed to the generic approach to his autism. We started our early, intensive intervention programme with much trepidation.  It was a major undertaking which would affect our whole family.  How would we cope?  Where would we find tutors to work with Oliver?  How would Oliver cope?  I heard 30 hours a week and felt guilty at the thought of subjecting him to so much time which I perceived as 'locked' in his room at a desk, but of course the reality was very different.  The emphasis was very much on play, learning and constant stimulation on a one to one basis.  But why do 30 hours when he could learn so much in 20 hours?  Because we wanted Oliver to reach his fullest potential.  There was never any question, the intervention had to be intensive.  It was all or nothing.  We decided to give it six months and haven't looked back since.
 
Diary - 5th July 2004
"EARLY INTERVENTION WORKSHOP TODAY!!
Today CEAT came to provide training to me and my home-tutors and to start Oliver's intervention programme.  How am I going to make this work??  Oli responded better than I expected in general but it was hard to watch this little person responding to new expectations.  Slowly though, he began to realise that it was fun.  A long, long day for everyone, full of theory and practice left all of us emotionally drained.  As my brother says, one step at a time and today was the 1st step of ABA...."

We met our CEAT Consultant, Liana Maione, fresh from Vancouver, in June 2004.  We were completely unaware of the massive impact she would have on our lives.  From his first meeting with her, Oli responded in ways I never imagined he was capable of - imitating clap hands, turn taking in a game, matching, but most of all, giving his full attention and having fun.  We all hugged her when she left that day, confident in what we were about to embark upon. There's no doubt that it was hard work.  Laminating, photocopying, printing, making schedules, circle time (hello oli, how are you today?!!), star charts etc, but once we started to see the small steps of progress, every part of it was worthwhile.
 
Diary - 6th August 2004
"Haven't written for a while but 1 month into the early intervention programme and Oli is already showing signs of improvement in speech and communication.  Most communication before the programme would have been for things he wanted - "wah" (water) etc - now he's asking "what's that?" - I can't believe it!  His play is becoming constructive as opposed to destructive.  He's learning so many new words - knowledge is power!"

Our early intervention programme lasted just over 2 years, shorter I believe than most, yet it was Oliver's rapid progression that allowed this.  We maintained an average of 30 hours per week up until the last few months of the programme.  We could at last see light at the end of the tunnel and it was at this stage that it would have been so easy to be complacent in terms of the number of hours per week.  Kimmy and Liana advised at least 18 hours per week minimum and that's what we did.  Peer play featured prominently in the last months and it was constant repetition of encouraging team work, negotiation, turn-taking and positive reinforcement that today allows him the opportunity to play independently with his friends. Oliver has progressed far beyond our original expectations.  So much so that I often ask myself if he stills fits the diagnostic criteria for autism.  I doubt that he does but he still has his little idiosyncrasies in terms of his often 'unconventional behaviour' which mainly manifests itself in loud verbal protests (that's where our ever faithful star charts come back into play time and time again). His self-esteen and morale are at an all time high.  A Trust clinical psychologist once told me that for Oliver, play is work and work is play, i.e. he didn't know the difference.  She also said that he could not respond to praise as he didn't understand it.  If you see my boy today you will know that she was wrong, wrong, wrong.  He has just started his first reading books at mainstream school and is so proud to come home and show us his new words.  He told his friend last week that he wished he had all the toys in the world so that mum didn't do any more star charts!

And finally....
There's good provision of ABA and poor, misleading provision of ABA, i.e. those who use the principles of ABA with children with ASD but who have not received the correct training in early, intensive intervention or autism.  It depends on who delivers it.  The 'poor' ABA is what the professionals in Northern Ireland have to get over and recognise that early, intensive intervention delivered through trained and experienced hands changes the lives of children and their families.  Liana once told me of one little boy in this country who after a few months of treatment was able to tell his mum that "when Liana comes, the words come out."  Equally, our lives have been transformed.  Oliver has gone from approximately 5 single-syllable words to including 'actually' in his sentences.  He and his elder sister Ellen play dressing up and pretend husband and wife together and call each other darling.  (They also fight a lot and he calls her a big fat idiot!).  He's been described by a Trust professional as a "social butterfly."  We can take him to restaurants and Tesco! All children with autism should be able to avail of what we did, but sadly this is not the case.  We are one of the lucky families and thanks to early intervention we are now at a point where we feel confident to try to find positives from Oliver's autism, e.g. you get to the front of the queue at Disneyland and you learn that you are stronger than you ever realised you could be.

We would like to thank Kimmy, Liana and Mary for all their hard work and dedication.  Hopefully the work of these three not home grown clinicians can be continued through our local consultants, many of whom were part of Oliver's journey.