The rollercoaster adventures of parenting three kids, dealing with disability and mental health.

Thursday, 24 July 2014

Diagnosis - 2014, the Big Setback

2014 was always going to be a difficult year of big changes. 

We just hadn't quite appreciated how big they would be.

All three children were starting at new schools. Beaver was off to High School, and was glad for it, as the last two years of Primary School were unpleasant to say the least. The small independent school we had sent the children to had gradually been changing, and I felt our two special needs children were not really welcome there anymore. When you get a sense everything is a "management problem" and you spend lots of cash on fees and special lessons and aides and their education does not advance, even goes backwards, you know something is not working. I was taking the kids to an outside reading program called "MultiLit" and our oldest advanced a year in reading age in just one term! So we decided to send BooBoo to the local primary school where she can be part of the local community and we spend our money on MultiLit and private tutoring instead. As it turned out, our sensitive little Possum was not really happy at school either (apart from his classmates, who were a super bunch) and decided to follow his sister to the local school for his very last year of Primary. Always the strategic chess-player, he also worked out that this was good preparation for going to the local High School next year. And there is of course always Skype and MineCraft to keep him connected with his old buddies....

By April, all the kids were settled into their new schools. Possum and BooBoo took to their local school like ducks to water,and even Beaver was starting to feel comfortable in the Special Support Unit (for kids with mild to moderate intellectual disabilities) at his High School. The only issue was his discomfort in using the toilets - grubby and far away, only reachable after navigating a throng of rowdy kids, so he tended to hold on too long and had the odd accident.

Things were getting easier.

We should have known better.

We noticed Beaver's gait changing in early April. This is not an unusual thing. Every time he has a growth spurt, it takes his body a while to "catch up" and his walking deteriorates. We didn't think too much off it. He certainly was growing rapidly.

Then he got a blister on his toe. A nasty blood blister, which kept growing and got infected. It turned into a pressure sore which needed specialist care. Towards the end of April Beaver needed to stay off his foot completely. Luckily we managed to get hold of an old wheelchair from a friend of ours so we  were not entirely house bound. School was off, though, as most of Beaver's school is housed in old buildings on a sloping site - including his Support Unit!

After rest and specialist care, the toe improved. But Beaver was not getting back on his feet easily. He seemed to have lost lots of muscle, and his balance seemed have gone missing. We bought him a walking frame and started a program of exercises to get him walking again.

At the same time, we were still tweaking his Bipolar medication. Beaver was stabilizing, but there were some serious side-effects to be dealt with, most notably significant weight gain.  We trialled a new medication, and the day after we introduced it, Beaver lost control over his bladder. We took the medication off, but the incontinence remained. 

All this made alarm bells ring and our psychiatrist decided the neuro-genetics team needed consulting. 

They came, and they did not like what they saw.

Some eyebrows were raised, some brows were furrowed, and some tests ordered.

Two days later Beaver went to bed shivering and shaking, as if he was in shock. The next morning he woke up and fell out of bed. He had lost control over his left leg.

We made a video and send it to the neurology team. Within days Beaver had an MRI of his brain and spine under a general anesthetic, a bladder ultrasound, a nerve conduction test. And then some.

We learned the meaning of some new words. Degenerative. Peripheral neuropathy. Demyelination. Neurogenic bladder. Intermittent self-catheterization.   

Thursday, 20 February 2014

Diagnosis 2013-2014

Then, very gently but unmistakably, puberty hit. And with it came a whole new set of acronyms.

Before you become a parent you have certain ideas about life. Then, you have kids, and the process of reassessing starts. And then your kid develops “issues” and you can reassess some more.

We have always favored what people consider a hippie lifestyle. You know the one. Vegetarian, organic, fairtrade, all natural. So how did we end up with a child medicated to the hilt? Ah, parenting…

Puberty hit, the hormone household is thrown upside down and sideways. Our kids turn into cranky monsters while their brain rearranges itself. Normal. Ok. Something every parent deals with – and in our quiet, introspective moments we think back to our teenage years and have to admit to a certain divine retribution. 

But wehen your child’s brain is already mixed up differently, puberty can bring along some extra challenges.

Cue the arrival of Anxiety, Obsessive Compulsive Disorder and Autism Spectrum Disorder (of the “previously known as Aspergers” variety). It was full on, but it was what it was. Then, things got really tricky.

Beaver has spent his primary school years at a small independent mainstream school. We were made very welcome there, and he was happy. Until puberty hit, and the school started changing.

As the kids got older, his learning difficulties became more obvious. His different behavior and interests made him stand out more and more. He started to disengage from his classmates, and his classmates from him. Where he had some contact before (especially with girls, but they now became a sub-group one could not possibly be seen talking to) he was now increasingly isolated, both socially and academically. He had no friends at school. At best, the kids ignored him (sending him on errands to get rid of him for a bit) at worst they pestered and bullied him (throwing food on him, telling him to “go home and die”). He was being difficult. He was being annoying. But he was just lonely and trying – in all the wrong ways – to reach out.

At the end of year five, he tried to drink some poison “because everyone would be better off if I was not here mum” and was diagnosed with depression. He was put on anti-depressants and things got a bit better, especially when he made a friend, a girl also on the spectrum who joined his class in year six. But by the end of year six, things fell apart again.

He was not happy at school, where he continued to be ignored and bullied. He was attending an out-of-school reading programme where in one term he progressed his reading age by a whole year. It made us question what our school fees were actually achieving – he was not learning, he had no friends, and he was desperately unhappy.

Last November, after a manic weekend I will not quickly forget, I took him to the emergency department at the children’s hospital. He was diagnosed with Bipolar Disorder – and we are still trying to get his medication right.

He left the school to go to the support unit at a nearby High School. He lost his friend (her parents clearly felt he was no good company for their daughter) and we are still struggling to control his illness. We have come down from the mania and have seen glimpses of him well again. But we are still not there, and now, mid February, he has still not been to high school for more than a few days.

I question my firm belief in inclusive education and wonder if the stress of being different helped to tip him over the edge. We have kept his sister in the mainstream (although we pulled her out of the independent school and she now attends a lovely little public school in walking distance from our house) but she’s altogether of a different character. However, the moment she gets isolated or bullied I will reconsider. Beaver feels very safe and secure at the support unit he attends now, and his self esteem is slowly improving because he is not constantly feeling like the slow one, the dumb one, the odd one out…


This blog has been very quiet - we have had too many changes to deal with. I hope to be with you all soon with an update.

Tuesday, 9 April 2013

Diagnosis 2008

"I think it's something genetic. I'd say you're lucky your second son is ok" she says. I look at the neurologist in horror.

"Genetic? That's not really the sort of thing I want to hear at the moment" I reply, and point at my belly. I explain that despite having had my tubes tied earlier that year, I am about 10 weeks pregnant with our very unplanned third child.

We’re still reeling from the shock of another pregnancy after we have gone to such lengths to ensure we have no more kids – and honestly, I'm still not sure I want to go ahead with this. And now here is a genetic disability to contemplate?

The neuro suggests we have an MRI, a spinal puncture, and various metabolic tests on Beaver to see if we can work out what causes his disability. Then she suggests that I can have a CVS for this baby, and if we find something for Beaver, we can test baby three for the same.

I explain that we've done all those tests on the boy and they showed nothing, We are no closer to understanding what causes Beaver's disability, and the CVS comes back all clear. It also tells us that after two boys, we have now created a girl.

I am slowly recovering from the initial shock of this pregnancy. I was so set in my mind that our family was complete with two kids, that I found it hard to comprehend that we would do the whole baby thing again. Still, we are getting to grips with the idea, and I decided that just because her arrival would be inconvenient is not enough reason to terminate a life. So another baby it will be.

Arrangements are made for a bigger car (Beaver's wheelchair and a pram won't fit in a family sedan), plans are drawn up for an extension to the house, and the midwife is booked for another homebirth – and after an exhausting pregnancy, a beautiful baby girl is born in a relaxed water birth in the kitchen. Despite our initial hesitations in having this baby, we instantly adore her, and settle into a busy yet happy routine as a family of five. We decide to give our little girl (blog name BooBoo) an old English name meaning "strong willed". We like that for a girl, and given the manner of her conception, we reason she must indeed have strong will to be here.

Everyone comments on how beautiful and petite BooBoo is, and how she looks like Beaver – although Possum is quick to point out that her hair is the same colour as his. She is a gentle natured baby, and seems to make our family complete. People comment on her alertness and the strong way in which she lifts her head up. We laugh and say "yes, she doesn’t' have what Beaver has, since he was a very floppy baby.

But then, very gradually, we notice that BooBoo seems more tense than strong. Richard and I quietly start to wonder why she's so placid, and why she's not really rolling over yet. We keep saying we should check the developmental milestones – we gave away all our baby books after I had my tubes tied, and should really buy a new one. Still, we put the niggling doubt to the back of our mind.

Until one day when BooBoo is nearly 6 months, the accumulated doubt solidifies like a hard rock in my stomach. I find it difficult to concentrate. I have looked up developmental milestones on the internet – and she's not achieving them. I have looked up newborn reflexes and baby weight and head circumference, and again, she's underperforming. My mind races over the possible implications as I take Beaver to his therapy at The Spastic Centre. I barely register what the boys are fighting about in the back of the car.

I don’t' know why, but today is the day I need to face this, I just need answers.

I walk up to the therapist and ambush her. "Please, can you be honest with me, does BooBoo have the same as Beaver?"

She turns towards me with tears in her eyes - and there I have my answer, even before she confesses that she had been watching BooBoo and states that "yes, there is certainly cause for concern" I know she add the last line because officially she's not allowed to diagnose, and really, her sentence stops after the word "yes".

I pick up Possum in a daze, and play with him and BooBoo while Beaver gets his therapy. On the way home, I can't hold it any longer, I have to pull the car over. My head buzzes, my face feels like it's on fire, and I cry and cry and cry. This can't be happening, How are we going to cope with this?

Why does BooBoo have to have it too?

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.

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.