Archive | March, 2008


31 Mar

We have been seeing a rolfer over the past month.

I had never heard of rolfing until it was recommended by a friend whose son also has cerebral palsy.

I can never properly explain (or to be honest, fully understand!) what a lot of alternative therapies like this do, so I will quote from the website

“RolfingĀ® Structural Integration is named after its founder Dr. Ida P. Rolf. Dr. Rolf began her inquiry more than fifty years ago, devoting her energy to creating a holistic system of soft tissue manipulation and movement education that organized the whole body in gravity.Dr. Rolf discovered that she could achieve remarkable changes in posture and structure by manipulating the body’s myofascial system and eventually named her work Structural Integration.”

Without fully understanding what it actually was, it certainly sounded like it was worth looking into, especially considering the incredible success we’ve had with our long term osteopathic treatments which seemed (sort of) on the same lines. So off we went.

Our rolfer is a really nice guy. He is very relaxed and easy going and clearly had worked a lot with children. He has a great manner. BC liked him immediately. He also knew quite a bit about CP, which always impresses me.

Our main focus was on BC’s oral motor function and speech. I have been long frustrated by how SLLOOOWWW progress is with his speech development. I’d never realised that CP would affect his speech at all. This was partly because I knew absolutely nothing about CP until BC was diagnosed, but even once I’d started reading up, it took me by surprise because we never really had major feeding issues – he left the hospital at 3 weeks of age fully breastfed and whilst he was a fussy eater who took a long time to manage textured food, he still did OK. So for his speech to be so dramatically affected has been the perplexing part of our journey so far.

He spent a lot of the first appointment working under BC’s chin and around his jaw on the outside. BC was lying on a massage type table and didn’t seem to mind what he was doing, but then that’s very typical of BC. He is the ideal patient in many ways because he just loves being the central focus of attention! And he seems to have an innate understanding that people who work with him are there to help. What’s more, he’s had similar and regular sorts of treatment (ie. osteopathy) since he was a wee baby, so it’s not that new for him.

Even after the first visit, we saw some results. BC’s sound production seemed to have improved quite a bit. He was attempting a few more 2 syllable words – most notably “boring” (prounced baw – ing) (used to a response to me asking him why he didn’t want to go to the toilet!) and nappy (nah -ee). Clear production of the “ee” sound was in fact quite new too.

The second appointment was 2 weeks later – just 1 week ago. This time he worked quite a bit INSIDE BC’s mouth. I was really quite nervous about how that would work because we’d never had anyone working INSIDE his mouth before. He’s not even been to see a dentist yet.

The rolfer put a little chocolate spread on his finger as a “sweetener” and BC coped really well with the treatments. It was just a minute or two at a time. And after each turn, he had a good at “treating” mum’s mouth. That made him very happy.

Within days, we saw results. He’s now attempting to sound out lots of multi syllabic words which he had never done before. He’s still got pretty poor control of his consonants, but the vowel sounds are much clearer. He has started trying to sing along to songs and seems a lot more confident about what his mouth can (or might be able to) do.

We have another appointment next week. I am excited to see how it will continue.

I don’t believe in a “magic cure”, but I certainly do think that combined, lots of different things help. And I am now officially a rolfing convert ;-).

Children with disabilities ‘as happy as classmates’

28 Mar

My son is the happiest 3 year old I have ever met. The most upsetting thing anyone has ever said about him in my earshot, was a woman who watched him walking in his Kaye Walker walking frame (he’s been using it since he was almost 2). He loves walking, especially in shopping malls where surfaces are flat and there’s lots of room. He was smiling and happy.

The woman pointed at him and commented loudly to her companion “look at that poor kid”. My son, is NOT a poor kid. I repeat, he’s the happiest 3 year old I know.

So, I didn’t need this article from the UK ‘Independent’ newspaper to tell me that children with disabilities can be happy, but I want everyone to read this article. And I never want anyone to feel sorry for my son. Their misplaced pity serves no purpose at all!

Children with disabilities ‘as happy as classmates’

By Jeremy Laurance, Health Editor (‘The Independent’)
Saturday, 30 June 2007

Sorrow and pity are natural responses to disability in children – but they are misplaced, researchers say.

There is no need to feel sad about youngsters with cerebral palsy because they experience life much as other children do – with all its joys and sadnesses, successes and failures.

Able-bodied adults tend to view such children in terms of the struggle they face and their lost potential for a full and active life. But that is not how the children see themselves, according to researchers from Newcastle University.

A study of 500 children with cerebral palsy in seven European countries has found that across a range of measures, including psychological wellbeing, self-perception and social support, their levels of satisfaction are as high as in other children.

Though disadvantaged, in some cases seriously, their impairment is incorporated into their sense of themselves from birth and they embrace life and all it has to offer with the same excitement as other children.

Professor Allan Colver of Newcastle University, who led the study, published in The Lancet, said it contained an important message for parents. “Parents can be upset when their child is diagnosed with cerebral palsy but they can now be reassured that most children with the condition who are capable of providing information at the age of eight to 12 have a similar quality of life to other children.”

In earlier research, he had shown that disabled children participated less in activities than other children, because of the restrictions imposed by their disability. But they were no less happy. The new study showed their quality of life, as reported by themselves, was no different. “A father came up to me after we reported the results and said, ‘You have already made me think differently about my child’,” Professor Colver said.

The findings reinforced the need for disabled children to be integrated into society, he added. “The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate that they experience life as do non-disabled children. Maximum effort is needed to ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children.”

Julie Johnson of Gateshead whose 10-year-old son, Nathan, was diagnosed with cerebral palsy at four months, said: “I treat Nathan and his brother the same and I have found that both of them rise to their own challenges. Nathan has problems with his left hand but quite simple steps have enabled him to attend a mainstream school. He is an active, happy child.”

Nathan said: “I like all my teachers and I have a big group of friends at school. I have a special board which helps me to write neater. At playtime we play tag and football.”

Why I must stop crying when he does amazing things (and why I know some very big words but prefer the very small ones)

27 Mar

My son made me cry last night when I put him to bed. I must stop crying when he does amazing things.

The first time this happened he was only 10 weeks old and all he did was smile. It was his first smile and it meant everything. Poor little guy must have wondered what he’d done wrong ;-).

I will go back a little further, before I go forward. My son had a very traumatic birth. He got stuck on the way out, needed resuscitation and spent the first 25 days of life in the NICU (neonatal intensive care unit). We had to very quickly (and unexpectedly!) learn very long new words like “shoulder dsytocia”, “Hypoxic Ischemic Encephalopathy”(HIE), “birth asphyxia”, “basal ganglia”, “intubation” etc etc. (And at this point I won’t even go into all the other words we’ve had to learn further down the track, including most significantly “athetoid cerebral palsy”.).

Wind forward to his 10 week old first smile. After 10 weeks of watching medical experts look sideways at our son every time he moved for signs of abnormality (whatever that means!), his smile was the sign I had been looking for. And as soon as he smiled, I cried. The first of many times I would cry at something amazing.

So last night, I was putting him to bed and I told him I loved him. And for the very first time, he responded with a full sentence. The words were not perfectly formed (he has very limited control of many consonants, but growing control over his vowel sounds), but they were unmistakable. It was his first ever sentence and the words were “I love you mum”. I didn’t let him see me cry this time, but when I went to the loungeroom, I told my husband that he’d made me cry. He asked if he’d given me another black eye (he’s a wobbly fella and sometimes gets a bit over excited and I have copped more than one black eye or bruise from an out of control body part, usually his noggin). But nope, all he did was speak.

It wasn’t a big deal to him, and I really must stop crying when he does amazing things or he’s going to grow up thinking his mother is a basket case.


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