What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Tuesday, 9 April 2013

Diagnosis 2006

From day one, there were some subtle doubts about our son Beaver's diagnosis of cerebral palsy (CP). When he was first diagnosed with Global Developmental Delay (back in October 2002 aged 22 months) we googled the term, and often found it mentioned in the same breath as CP. Yet our paediatrician wasn't sure. Beaver seemed to be able to do some things kids with CP shouldn't, and then managed not to do some things which kids with CP should. Still, about a year later (in July 2003 at age 2 and a half) we did get the CP diagnosis on a piece of paper after more or less begging for a formal confirmation from a specialist doctor at the Physical Disabilities Clinic in Westmead. By then we were desperate for a label, an easy box to tick. As awful as that sounds, that's the way the disability sector in Australia works. No label, no services.
Yet the doctor seemed unsure, and made a point of explaining a CP as a movement disorder caused by some type of brain damage before stating, with a slight yet clearly detectable hesitation, that Beaver would "fit into that category". As he pointed out, only an MRI scan of Beaver's brain could really tell. Now that's quite a procedure with a young child, requiring a general anaesthetic. Since knowing the exact cause and type of his disability would not actually change his therapies, we decided to put it off till later.
With our new CP label, we were now able to access the services of The Spastic Centre (and don't get me started on that name!), the prime disability services provider in NSW for people with CP. We were allocated a speech, occupational and physio therapist, and started hydrotherapy and a radically different therapy program called Conductive Education (CE).
Interestingly, when Beaver was assessed for CE, the conductor (as the educators in the programme are known) seemed unsure about Beaver having CP. Still, we had the letter from Westmead, The Spastic Centre (TSC) had accepted us, and she had no doubt her program would suit Beaver, so off he went. She was quite right. The program suited him so well that in addition to two days in a mainstream preschool, we chose to send Beaver to 2 CE sessions a week and ceased conventional physiotherapy. Beaver blossomed.
At the beginning of this journey, we were told Beaver would probably never walk independently or talk and his intellectual abilities were unknown. Yet after about 4 or 5 months of using a Kaye walker, Beaver took his first independent steps on the very same day his 2 year younger brother Possum first walked (in February 2004, at age 3 years and 3 months) and by the end of that year, started to say his first few words in addition to the sign language we used with him. He now walks and even runs, albeit in a wobbly way, and it’s a cherished moment when he stops chattering for a while.
In mid 2005, we decided to try and gauge Beaver intellectual abilities. A psychologist from TSC tested him (with a Wechsler Preschool and Primary School Scale of Intelligence, third edition, known as WPPSI 3), and unfortunately the results were disappointing. Beaver was found to be behind in all levels, and classified as "borderline to impaired" meaning he had a high chance of having an intellectual disability on top of his physical one. Although the psychologist explained that the test needed to be interpreted with some caution due to his expressive language delays and articulation difficulties, this was another unexpected setback! Nevertheless, we decided to go ahead with sending Beaver to a mainstream school, and found a small school that fitted with our values as a family, and seemed welcoming. The schools' special educator requested that towards the end of the year, Beaver and I come and see her on a weekly basis so that she could get to know him, and make him comfortable with both her and the school.
Towards the end of 2005, Beaver amazed everyone by the rapid progress he was making. While it still took him a long time to master new sounds, once he "had" them, he not only managed to use them widely (beginning, middle and end of words, new and different words) but was even able to self-correct quite easily. This amazed his speech therapist. She had never seen anything like it in a child with CP. As Beaver's speech progressed to near "normal", his cognitive abilities were coming along rapidly and his social skills took a huge leap. His preschool teachers noted increased confidence and abilities, and felt Beaver was learning exponentially. After getting to know him for a few weeks, the special educator at Beaver's chosen school expressed her doubts about him having an intellectual disability. Based on her many years of experience, she felt Beaver had a significant developmental delay, and most likely some learning difficulties, but she felt he did not present with an intellectual disability.
We were getting increasingly confused and started to wonder if we were on the right track. We returned to the specialist at the Physical Disability Clinic in Westmead (who had given us the initial reluctant diagnosis of CP) for our annual check-up, and impressed by Beaver's achievements, he confirmed our doubts around the diagnosis. So in September 2005, we consulted a paediatric neurologist at Westmead. She too seemed to think our boy was unusual, and scheduled a brain scan, a spinal lumbar puncture, a blood, liver and urine test, checking for a raft of things I don’t understand. All of them came back clear. In our follow up meeting with the neurologist, she stated that, as Beaver's MRI showed no brain damage and he did not have a clear pattern of CP symptoms, she herself would not classify him as such; she'd diagnose "a movement disorder of yet unknown cause, most likely due to a chemical imbalance." Yeah right. that's about as clear as mud! Back to square one.

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