Friday, December 14, 2012

Samuel's Story

Guest blogger Liz tells the inspiring story of her son Samuel

This is our journey so far....

We begin in the present as Samuel sums up his educational life to date.
December 2012, Samuel has said and I quote:
  "I failed kindy, I failed pre-school, I failed primary school, I partially failed high school (got his WACE) but when I got to uni I didn’t fail anything and got the most important one of the whole lot worth degree!  I learnt how to fail and keep going really well, better than some people who passed easily but then couldn’t deal with it getting harder or even minor failures and they then dropped out...gave up".

My son turned all these perceived failures into a goal and success.  In his gi-normous struggles –  he  found his strengths, his talent and his resilience.

A quiet and observant child, friends would say to me that he was an old soul, mature about complex issues but childlike and shy in others. The first sign….while most 2-4 year olds could remember the button to push to start the TV he needed to be shown every time.
Primary School 1995-2002
We have a running joke in our family - when I was pregnant with Samuel I was asked to participate in a long term study about what influences a baby’s/child/teenagers/adults  health and development throughout life.  So my child has been monitored to this day about every aspect of his life to date. This study meant regular assessments with the research team.  It also meant that when other studies were being done we were asked to participate in those. The joke  - when tensions at home got high I’d jokingly say “If you are not careful I will sell you for medical experiments!” Samuels stock answer and diffuser of the situation was “You already have”! Humour got us through many times when the serious and dare I say competitive people deflated us.

It was this study participation that started the ball rolling so to speak.  Samuel was not doing well in Year 1  - fine motor problems, language problems, reading problems, could not write his name or remember his age, birthday and address, let alone his home phone number. Numbers were beyond him. As the stock answer from his teacher and those for the next 3 years was don’t worry he’s just immature a feeling of foreboding came over me.  Developmental differences are common but….not until at the research assessment age 5 did the alarms bells ring.  Normally researchers did not tell parents results of the testing they did except in exceptional situations. Samuel was an exception.  At 5 he had the vocabulary of a 10 year old. So why the learning and attentional problems? Teacher when told was non-receptive to the idea that this was the case.  I experienced my first patronising situation….many followed in the coming years, so many that I developed a pro-active and advocating stance that was formidable  at times. At the end of year 1 this very same teacher said he had not passed required benchmarks, would I consider him repeating the year.  I suggested that an assessment of his needs and problems might be more worthwhile,

 Luck was on my side. The visiting school educational psychologist was  from the Graduate School of Education at UWA, and an experienced assessor for learning and attentional disorders, Up shot - repeating the year was going to be of little value as Samuel would still have the same problems and needed to been seen by a barrage of speech, occupational, audiological and visual therapists. Assessment, then treatment and management programs needed to be established and maintained. Schooling needs were reinforced by teaching them myself. Relationships that previously were normal became strained as Samuel buckled under the onslaught of all this remedial-ness.

Four years on …attention getting worse, learning and work completion not happening. Finally a teacher is assigned to him who has done postgraduate studies in special needs education, She suggests to about three parents including us that a referral to a paediatric developmental specialist may be useful. The other parents chose to ignore her advice. I go directly to my GP and get a referral to a specialist that altered the course of Samuel’s future.

As a parent with a "different child" you agonise about your perceived failures in the most important role of your life. You seek help and find none available...your aloneness is palpable; other parents become judgemental and sceptical when labels start getting affixed to your child. They do not see the hours and hours of extra time and the financial stress, spent researching, getting assessments, seeking therapists, finding specialists, obtaining resources for educating what the teachers saw as unteachable and the resulting strains on the family.

A diagnosis from the specialist and treatment trials began for Samuel and recommendations to join a support group made an instantaneous difference to our lives.

The day Samuel topped the class in a science test was so auspicious that the whole class applauded his efforts!  I cried…. I am crying while I write this as it brings back some painful memories.

 I’d like to say that it got easier for the next two years that he stayed at that school, but while I still did - the be there every day so the teachers could discuss the day with me-thing, it was still a struggle for Samuel.  He had lost too many precious years of fundamental learning skills, especially the mathematics window that closed too early for him. He still had terrible handwriting skills, spelling was a hit and miss and mental arithmetic out of bounds. He survived on structure, re-enforcement and a laptop computer we bought second hand to aid his spelling and writing problems. There were no aids, tools or teaching support staff on offer from the Education Department at this time.
Dyspraxia, dyscalculia, mild dyslexia, dysgraphia, short term memory and processing deficients, visual tracking and processing problems – I became a walking medical dictionary as I annually conveyed his disorders to teachers with little or no special needs training.

My husband and I decided that Samuel needed to begin his high school life at a new school starting in year 7 to allow extra time for orientation to this transitional phase of his education. It was a decision we never regretted.  We found another teacher who recognised Samuel’s differences as being unique and nurtured him throughout his whole time in high school.  Where the school might have put up obstacles this teacher went into bat for Samuel.  He and his wife remain important friends in our lives.
 To cut an even more convoluted story short. Samuel had always had a goal to go to university. Developmentally he was 12-18 months behind his peers. I knew it would take an extra year. However, Samuel was determined to sit TEE exams with his mates – peer pressure doesn’t help in this age group.  I said do your best, don’t stress, we know the sun comes up the next day. He sat the exams without any special considerations…. he is enormously proud that he was not the bottom of the TEE ranking in his school…another boy was…his sense of humour got him through.  The TEE while not giving him his first career choice did allow him to be accepted for a University Preparation Course.  This in turn meant he could fall back on his plan B of a visual arts degree. His only ever one academic recorded A was in his WACE certificate for Art and Design, a talent that he didn’t see until his portfolio was required for course acceptance after he completed the UPC.

Samuel has now completed three years without one fail or repeat of a Bachelors Degree in Contemporary Art Majoring in Visual Art. He exhibited a piece called
Death Stands Before You'   at the recent  Graduate Art Exhibition 2012 at ECU. His artist statement for the piece reads;
When you look into the void, the void will look back into you, neither will like what it sees. It is strange how life is only reflected when gazing upon the demised.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                             
 He still has not learnt to drive a car but that is his next goal… that…and get a job…so his parents can take a financial break! The road ahead will be interesting.
Oh and he promises me that he will buy me an island when he is rich and famous!

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