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.

Monday, 8 April 2013

Diagnosis 2004

Diagnosis 2005

Beaver was born full term, after an un-eventful pregnancy. I always wanted a home birth (not unusual in Europe), and since all was well during the pregnancy I was allowed to start the birth at home. Beaver was born in our UK living room, with an apgar score of 9 and 10. He was a bit jaundiced and a slow feeder at first, which picked up soon after an older midwife showed me a good trick (involving a rather gymnastic flick of the nipple) to get "lazy" babies on the breast. At his 6 weeks check up, the doctor commented on what a beautiful baby Beaver was, and how serious he looked. We were blissfully happy (and busy!) with our gorgeous little boy.

As time progressed, we had to admit that Beaver seemed slower than other kids. But then again, we could only really compare Beaver to our friends' baby (half a year older) who we thought was "full on" (he was later diagnosed as having severe ADHD). We figured our little man was just a typical boy, a bit slow, and probably the chilled type, like his parents.

When Beaver was 7 months old, we moved to Australia, and my husband's mum tried to carefully tell us that something was not quite right. We simply did not believe her. Our baby boy was just perfect! Could she not see that? At one point, I "faked" a photograph of Beaver sitting independently to send to my mum in Belgium – who had been talking on the phone with my husband's mum, and was worried too. In the end, we took Beaver to see a paediatrician, just to get the grouchy grannies off our back.

To our dismay and disbelief, the paediatrician seemed to take their side! He told us that Beaver had a developmental delay that warranted further scrutiny. The assessment which tries to capture the developmental age of a child (for those "in the know", it used the Griffiths scale) was horrible. The people were nice enough, but did the test in a rather distant manner in a terribly dark and gloomy place. Beaver spent most of his time crying for mum or dad and was not terribly co-operative, even with those tasks I knew he could achieve. At the end, they delivered us the diagnosis of "global developmental delay" (GDD). Suddenly we no longer had a slightly slow child, but one with a "diagnosis". What did it all mean? What could this be? We went straight home and searched the internet. GDD was often followed by the term Cerebral Palsy, so on our follow up visit to the pediatrician, we asked if Beaver might have CP. The doctors said he didn't think so, as Beaver could so some things that were not normally done by kids with CP. but then, he didn't fit the category of Autism - the other often mentioned with GDD - either.

Our boy was sent to do some physio and OT, and to be assessed again a year later. So, we though all we had to do is some extra work and Beaver would catch up fine! Not so. In the assessment a year later, the same delay was found - the delay had not increased, but neither had Beaver caught up. It slowly dawned on us that this was serious, and that our lives had altered dramatically. We figured we needed to face reality, and joined LifeStart, a wonderful early intervention co-op of parents of kids with disabilities. One day I met another LifeStart mum whose boy had officially been diagnosed with CP. She took one look at Beaver's gait and told me she thought he too had CP. While I didn't like what I heard, when I looked at her boy, there was no denying the similarity. Talk about a shock!

Then the physio decided to take Beaver to the Physical Disability Clinic at Westmead for a Botox assessment. Looking up GDD and Botox on the internet, the term CP kept coming back like a bad dream – Botox is injected into the spastic muscles to temporarily relax them so strengthening work can be done on the surrounding muscle to counter the spastic ones. Sitting in front of the specialist, I could bear the uncertainty no longer, and asked him if he thought Beaver had CP. He hesitated, explained cerebral palsy to us, and then I heard him say that, yes, our gorgeous, perfect son "fitted in that category!"

Even though I was more or less asking for a confirmation I was stunned when it came.

In the report sent to us later, Beaver was classified as having spastic quadriplegic cerebral palsy. Oh no! Surely not? Not the "S" word!?! The very first phsyio that worked with Beaver after his initial assessment had suggested we go and see The Spastic Centre. Our reaction was, "we're not going there, we don't need to go there" – yet now here we were! Of course that physio knew from the moment she saw Beaver, almost a year and a half before we went to Westmead! I still wonder why she never told us. Parents need time to digest the information, and I feel the sooner the better. I know denial is a very powerful strategy, and we certainly excelled at it, but I so wish someone had taken us aside and quietly explained their suspicions early on – we could have done so much more early intervention in that time had someone had the guts to be honest with us.

1 comment:

Anonymous said...

May I ask how the specialists came to the diagnosis of HSP, my family is going through a similar process.