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Breaking up…

I have come to realise that simply liking a therapist is not a good enough reason for my son to continue his therapy with them.  Seems obvious, right…?  Maybe it is, however choosing a therapist is very difficult.  After researching therapists who live somewhere in the vicinity, and whom also specialise in the skills your child requires (which is a task in itself), your child may not respond well to certain personalities, and if they don’t like the therapist, not matter how “good” they are, therapy is not going to progress well. 

Recently I decided to reassess all of Harry’s therapies and therapists in light of the fact that he will be starting kindergarten next year (and the fact that we currently spend in excess of $600 a fortnight on therapies).  Currently, Harry attends physio, occupational therapy, swimming, horse-riding, and speech therapy (some of which are attended multiple times in a week).  Kindergarten will mean fewer days are available for therapy, and hopefully some components of therapy will be provided throughout the day whilst at kindergarten (he will be attending a mix of normal and special kindergarten).  

Unfortunately, terminating a child-therapist relationship, feels like a breakup.  I feel like I am dumping them…  Maybe I feel bad because in the back of my mind I feel that we have not seen strong results and good progress, and we are not merely “taking a break” as I have implied to them, but maybe I am in actual fact firing (dumping) them due to incompetence…?? 

It is difficult to be patient with therapists – you visit them so regularly and watch them “play” with your child, and then charge an exorbitant fee.  Progress is very slow with a special needs child, and often you feel like you are getting nowhere.  Is it better to seek out a new therapist and “change things up” or are we just a few more “therapist-child play dates” away from the next big breakthrough…? 

Unfortunately I am not an overly patient person.  I think it is time to shake things up with some new therapies, out with the old, in with the new!  Harry starts hydrotherapy next week… wish us luck!

 
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Posted by on November 10, 2013 in Uncategorized

 

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Sometimes I feel guilty that my son is not “worse”

This may sound odd.  It sounds odd to me at least, and I am the one writing it.  Sometimes, when in the presence of other special needs parents, I feel guilty that my son is making good progress.  I feel guilty that my son’s condition is different to theirs.

I suppose this is maybe how people with normally developing children feel when they are around me – although, based on the constant boasting about their child’s most recent achievements, I have never gained this impression.  I may be wrong.  Maybe that is why people say a little too often just how cute Harry is, or how well he’s doing…

For more than a year, my son has been attending a local playgroup run by a special needs school.  It is a fantastic and diverse group – which makes it wonderful, as every child has things they can do well, and things they have trouble with.  Although I don’t compare Harry to other kids, it is difficult not to notice some very obvious differences, especially when around groups of normally developing children.  A pink frangipani in a sea of white roses, whilst beautiful, is very noticeable, as is a child who doesn’t walk or speak, amongst his peers who do.

When asked at playgroup how Harry is progressing, in general, I am thrilled to say he is doing very well.  However, parents have a tendency to ask about issues your children have in common, which can dull the elation and stir feelings of guilt.  For example, the mother of a little boy with a severe epilepsy disorder (Dravet syndrome) will ask how Harry’s going with his seizures, the mother of a little boy with eating and sensory issues will ask how Harry’s progressing with his eating (as he has issues with this), the mother of a little boy with autism learning sign language asks how Harry’s communication and signing is going.  When answering these wonderful ladies, a pang of guilt overtakes my pride and I feel terrible when I reply saying that Harry has remained seizure free for nearly three months, he’s improving with his eating, and he has learned two new signs since playgroup last week.

I know how it feels when your child isn’t progressing, and I don’t want to boast that my child is doing well when another child is regressing.  I do not feel sorry or pity for these ladies.  I do feel for them though.  I feel compassion. I feel empathy.  More than anything I feel proud.  Proud of their hard work with their children, proud to know them, and proud that they are doing their best to hold it together, day after day – that in itself is a huge and daunting task.  When you are struggling emotionally with your child’s diagnosis, delayed development, fears for their future, sleepless nights, gruelling therapy schedules, and all the rest – and on top of this have to stand up and be an advocate for your child day after day – it is tough.

Maybe it is not guilt that I feel after all.

 
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Posted by on September 12, 2012 in Uncategorized

 

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Anti-Vax…?

I know I am entering dangerous waters just by mentioning this topic.  However my intention is not to rant on about my personal opinion, it is simply to pose a question:

If a person chooses not to vaccinate their child, and that child is then infected with a disease which would have been prevented or mitigated by the vaccine – does that parent allow the child to be treated by a doctor using modern biomedical treatments/drugs?”

The reason I ask, is because to me, this would seem a little hypocritical.  There are specific requirements to get a drug approved – I don’t personally know every aspect of the process and I am not claiming to be an expert, but it is not a quick or easy process, and there are a wealth of evidence-based research, studies and trials conducted before it is offered to the public.  More information can be found here: http://www.cdc.gov/vaccines/resdev/test-approve.htm.

Obviously there are reasons behind people’s choice not to vaccinate – a study of more than 11,000 parents conducted in 2009 showed that approximately 40% of parents (involved in the study) delayed or refused vaccines for their children.  The main reasons for this were that they either did not believe that vaccines were beneficial to the health of their children, or they believed the vaccine was harmful to their child.  The study can be viewed here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3113438/.

I don’t personally want to get into the argument of whether vaccines contain harmful ingredients, or whether they do or do not have links to autism, or any to other condition or disease.  The issue I have is this: drugs (as opposed to vaccines) can also contain harmful ingredients; so, when a child is experiencing ill health and is in a life threatening position due to a disease with a known vaccine, does a person who has refused their child the “protection” from this exact illness then allow life saving drugs to be administered to their child?  Surely this is hypocritical?  I would love to know (honestly), whether people who decide against vaccines because they believe they are harmful to their children, conduct extensive research before allowing other drugs to be administered to their children during times of illness.

Vaccines don’t necessarily prevent a person from catching  a disease, they teach our body to be able to defend itself against it should we be exposed to the disease during our lifetime – so there are many arguments to be had about the effectiveness of the vaccine and/or the potential severity of the illness had the child had in fact been vaccinated.  My post is not really about that side of things – it is simply a moral question.

If you refuse to vaccinate your child, doesn’t that mean you believe your child should be denied  all medical treatment…?  Or is it a case of wanting to have your cake and eat it too…?

As a footnote – I would like to add that I do realise that people may argue that “other drugs” have not been linked to autism and so it is not a fair argument.  However, just because they haven’t yet, doesn’t mean the won’t be in the future.  Further, and more importantly, the only strong evidence supporting the autism link (by Dr Andrew Wakefield) has been discredited (he was also charged with a number of crimes committed against children during his research) – not by people “saying” it wasn’t true – but by scientists trying to repeat his study (for those not in the know – this is one of the main measures used in science – an experiment must be repeatable).

 
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Posted by on August 31, 2012 in Uncategorized

 

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