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Monthly Archives: August 2012

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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Where did my social life go?

I occasionally wonder, where did my social life go, when did I decide I prefer to be home and in bed at a reasonable hour, and why do I feel guilty about it?

For the first year or so of Harry’s life I watched as my friends went out together – without me.  Facebook updates and photos that were never of me, rubbed it in all the more.  Often I was invited, but was too tired, or it was not convenient due to a number of child-related reasons.  Many of my friends seemed to only have free time to spend with me at midnight on Saturday night, which didn’t really fit in with late night feeds and early morning crying.  Somehow the rest of their weekends were always full with other things.  Please note, that is not a dig or implied negatively (even though it may read that way) – all I am saying is my friends have their own lives to try and get on with.   I missed the freedom of being able to have a glass of wine (while breast feeding) or to do really anything without having to plan in advance.  I missed my friends.  And, when I did catch up with a friend, God bless their poor souls, I would talk 90 miles an hour like a crazed woman, even though I really had nothing to talk about.

When Harry was about 1 ½  I realised that the problem wasn’t that I couldn’t have a social life – the only person restricting me was myself.  I could see my friends – the problem was I would feel guilty if I was away from Harry.  My job as his mother is to be there for him, not to leave him with his dad so I can run off and party with my friends.  I went for over a year without spending more than an hour or two away from Harry.

I did eventually start accepting invitations to nights out with the girls.  However, this sparked a new (fear-based) problem.  If I agree to go out with my friends, I have no idea what to wear.  Now this will sound silly – very silly – to many of you.  But it is not as simple as looking through my wardrobe and having trouble deciding what to wear – if you haven’t been out much socially in 6-12 months, you literally don’t know what people wear to certain events.  I would dress up for dinner, and then all my friends (who usually are very dressed up) would be dressed casually.  If we go out for drinks, I literally don’t own anything that is considered current “pub fashion”.  The thought of a night out having a few drinks with my friends starts off (in my head) as a great idea – a night away from a grumpy toddler, time to be myself, etc.  However it soon turns into stress about having nothing to wear, looking in the mirror and seeing titanic thighs and a double chin staring back at me, and no idea what to wear to be able to blend in with all the “cool kids” who do this every week.  My well intentioned night out with the girls morphs into a nightmare of stress and anxiety before I’ve even left the house – and I desperately want to cancel the whole thing.

Things haven’t changed a lot, I still have battles with myself about whether to go out and socialise or stay at home with my family.  This post is not about how I miraculously found the answers – I still don’t really know how to make it all work.  I feel that I have more balance in my life now, although maybe in reality I have just learned to not be so upset hearing about all the things my friends do without me – because I now understand that it is my choice, and not their intention.

Having said that, I have to say, I do have very good friends – real friends.  These people have been there for me whenever I needed them (and I am there for them whenever they need me too), and even though my life has changed and I don’t manage to attend social gatherings very often, every now and then they do their utmost to remind me that they will always be there for me – and that is why I love them.

 
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Posted by on August 29, 2012 in Uncategorized

 

“Mummy, what’s wrong with him?”

Something I have been worried about for a while is whether Harry will be teased at school, and will he make friends and generally enjoy his childhood.  I have brought this up with parents of older kids with special needs and have received differing responses.  Some say that young kids are very caring and loving, little girls especially, and often will take a child with special needs under their wing and become quite protective of them.  Other parents have said that their special needs child was teased on a daily basis, and that kids can be horrid to each other.

A couple of weeks ago, my fears were somewhat realised, and then put to rest.  A five year old boy was playing with Harry while I was chatting to his mum.  Within a few minutes, the little boy started saying “Mummy, what’s wrong with him?  What’s wrong with him, why can’t he talk? What’s wrong with him??”.  I felt like someone had slapped me.  I was dumbfounded, upset, had absolutely no idea what to say, and was struggling to keep my composure.  The boy’s mother was wonderful, and simply said “it’s okay, he’s still learning to talk”, and with that the little boy seemed to understand two things – first, that his assumption that Harry was unable to speak was correct, and second, that it was no big deal.  The two boys played together, and for the next half hour there was non-stop giggling from both of them, Harry in particular.

Such a simple response hadn’t occurred to me.  I felt like all of my worst fears for Harry’s school years had been proven to be real – other kids would notice he was different, and they would be very verbal about it.  However, at the same time I saw that there was a good chance that Harry will make friends and have fun, and not be teased or ridiculed.

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One piece of advice I have been given by the mother of a teenage boy with cerebral palsy: if you can, try to join local groups with similar aged kids who are likely to attend the same school.  This way by the time the child with difficulties gets to school, they already have friendships formed.  I haven’t yet managed to infiltrate any groups such as this, but I know they exist and when I find the time, I will be contacting them.  In the meantime I will continue to heed the advice of those more experienced than myself, and urge people to post any thoughts or advice they have that might be of value to myself or others.

 
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Posted by on August 24, 2012 in Uncategorized

 

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Career or Carer…?

There are a number of reasons why a parent will feel either pressure or desire to return to work after having a child.  For some, being a stay at home parent is simply not financially viable, and others may prefer to continue with their career, or find that spending time (away from children) with adults in a working environment is vital for their own sanity and emotional wellbeing!

When I was pregnant I told my boss to expect me back at work within six months of Harry being born.  She repeatedly told me that I might feel different about things after he was born, and that I shouldn’t be hasty with setting a return date.  With the complications and health concerns surrounding Harry’s first few months of life, returning to work was the last thing on my mind.  But once things settled down, and as the months passed, I began to miss my “old life”.

I knew prior to having a baby that a child means big changes, but what I didn’t realise was I would feel like I had little or no control over so many aspects of my life, and how lonely and unappreciated I would feel.  I missed my job – well, perhaps I didn’t miss going to work as such, but I missed the interaction with real people, and the satisfaction of problem solving, meeting deadlines, and being told I’d done a great job.  My job had made me feel like I was a truly valued and appreciated team member.

Harry kept me busy, and I loved seeing him improve and feeling like our hard work was paying off, but I would often have a strong yearning to return to work.  I wanted to feel important.  I wanted to have someone appreciate me.  So, I applied for a job.  The position was working two days a week, and was very flexible.  It was the PERFECT job.  I went for the interview, and all went well.  The following weekend we had a family trip away at a resort hotel.  While in the pool with Harry, he had a seizure.  He had been sitting in about two inches of water, and he “dropped”.  His face landed in the water, and there and then I decided I was being selfish to even consider working, and there was no way I could go back to work and put Harry in childcare.  Harry has epilepsy, and at that stage had been having myoclonic and drop seizures.  Seeing Harry face plant into the water made me realise I didn’t want to be away from my son, and I certainly didn’t want him in a class of 20 other kids where a seizure might not be noticed by a staff member.  The next week I was offered the job – which I declined.

A few months later, after Harry’s epilepsy was under control, I once again felt the urge to return to work.  I applied for another job.  A month later I figured I must have not been shortlisted as I had not heard back.  I began to think it was a good thing, and when I was notified I had been shortlisted for an interview I was almost disappointed.  Harry had been really improving – he’d learnt a number of signs (sign language) and was really thriving.  I realised if he was put in childcare so I could work he wouldn’t be taught new signs and wouldn’t practise them all day.  The teachers and other kids wouldn’t facilitate his needs.  It finally started to click and I realised just how important I was to Harry (other than just for regular “mummy duties”, and I learnt to appreciate myself for my hard work – without needing someone else to “stroke my ego” (although it is still nice to occasionally hear positive comments).  I realised that I liked the “idea” of working, not the reality.  I also realised that soon Harry will be ready for kindy, and then school.  I am not ready to let him go just yet – I certainly don’t want to have days not spent with Harry when there is no need for it.  Not yet.

I called and cancelled the interview.  I won’t be applying for anymore jobs.  I am extremely happy and fulfilled with the job I have.

 
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Posted by on August 22, 2012 in Uncategorized

 

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Beyond All Expectations

When we were first told of Harry’s diagnosis and the likely prognosis that goes with it I was devastated. However we were given some optimistic hope along the way – which usually slapped me in the face and left me a mess on the floor.  These were things such as being told by the neurologist when Harry was only a few months old that there was a decent chance that he would grow out of his seizures in the first three to six months of his life.  When Harry was three months old I attended his EEG completely expecting to be told by the neurologist that the seizures had improved or were gone completely – this was not the case.  Again at six months I had convinced myself that Harry would be declared seizure free (especially since we had not witnessed any physical seizure symptoms).  It turned out that Harry had a huge amount of abnormal brain activity going on in the background, and the medication he was on was preventing him from having actual seizures.  Instead of being told that Harry was “better” I was told that he would be diagnosed as having epilepsy and we would be need to change his medicine to a “long-term” medicine.

It may not seem like much, but again I was devastated.  I sat in the car park and cried for about 20 minutes before driving away from the hospital.  Upon leaving the car park, my parking ticket would not work – I spoke to the car park attendant and he informed me that there is a specified time allowed between paying for parking and exiting the car park – 20 minutes.  

A few months later, once we had a better understanding of the fact that Harry would have physical difficulties due to having left hemiplegia, we had the great idea of enrolling Harry in a toddler “learn a second language school”.  We thought if he will be restricted physically then we will do our best to make sure he has lots of other options available.  At that time we did not realise that Harry wouldn’t be able to speak…  

Harry had some eating and drooling issues so was seeing a speech therapist through a Cerebral Palsy provider service.  One day I asked about Harry’s speech, as I had noticed he was behind in speech development, having only one sound “dadadadadada”, while other kids his age had 25+ words.  The speech therapist informed me that kids with CP often don’t speak until they are 5 or even 11 years old, or sometimes speech doesn’t develop at all.  Once again, devastated.  Why had no one ever told me this before?  

So… in getting to the point of my story, I have learnt over time not to get my hopes up when it comes to Harry.  That is not to say I don’t have hopes and dreams, I do.  I put in 100% to help him achieve and develop the best way he can, however the goals I set are small, and when he achieves them I am over the moon and beyond words with joy.  Somewhere along the way I stopped over-thinking about the future, and started living day to day.  All I care about is what Harry can do today, and what we have planned for tomorrow.  

Harry has been attending regular physiotherapy sessions since he was six months old.  For the past YEAR , the focus of physio has been on standing and walking.  Two months ago, Harry started to walk.  Initially it was one step, then three, then six, and now he can walk across a room.  He is wobbly and he falls a lot, but he is up and he is doing it!  

I didn’t realise until I actually saw him walk, that I never honestly believed that he would ever walk by himself.  

 
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Posted by on August 19, 2012 in Uncategorized

 

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