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How do I know if I am doing the right thing for my son?

My son Harry will be three years old in January 2013 and doesn’t yet speak.  He can say “Mum” and “Dad”, however they are generally not used in context.  With the exception of those two words, Harry does not have any speech at all.  To the extent that he doesn’t even have any part words or sounds that he uses in place of words.  So, as a means of encouraging and enabling communication, our speech therapist recommended a combination of PECS (picture exchange cards – which we have only recently introduced) and Makaton (key word signing).

ImageSince introducing Makaton signing, Harry has been a different boy.  It was a huge effort to teach him the first few, but once he understood the concept it became a lot easier to teach new signs.  Harry currently knows 17 signs and his frustration at not being able to communicate with us has decreased dramatically, resulting in a much happier little boy.

Makaton is not sign language.  It is “key word signing”, and people who use it sign only the key parts of the question/statement, for example Harry might sign “drink”, whereas a person using sign language would sign the equivalent of what a person would say using words, eg “I want a drink” or “can I have a drink?”.  A person who learns sign language such as Auslan will likely not understand what a person using Makaton is saying/signing.  The intended use for Makaton (which in Australia is now known as Key Word Sign Australia) is to bridge communication while speech is developing.  It is used with children who are expected to, or have a chance of eventually developing speech.  “Real” sign language such as Auslan and their international equivalents are generally taught to children from an early age only if they are deaf or for some other reason unlikely to ever speak.

I recently read (and commented on) a blog discussing an argument about why BSL (the British equivalent Imageof Auslan) should have been used on a children’s television programme rather than Makaton (which is what they have used).  I think it is wonderful that any children’s programme is attempting to accommodate children with special needs by incorporating signing.  Perhaps the argument really shouldn’t be “which form of sign language should be used on a television programme for children”, but rather, is Makaton really more beneficial for children with speech delays than Auslan, and would it be better if only a single form of sign language (eg “real sign language” not Makaton) was taught to children?  Interestingly (and something I have only recently discovered), children who are taught Auslan are likely to have just as many “words”, if not more, than their verbal peers.

For children – while they are still children, Makaton is fine and serves its purpose well.  Unless attending a school for the deaf or other special school where everyone is signing from a young age, your child’s peers are unlikely to sign back or understand any form of signing your child does regardless of whether it is Makaton or Auslan.  Also – Makaton is often used with children who may have more than just speech delays.  It is much less complex than Auslan, and has many benefits for a child that cannot speak and may struggle to learn to sign full sentences due to other difficulties or developmental delays.  In my opinion, in many cases and in particular for children who do end up developing speech at a reasonably young age (eg before age 5), Makaton is probably fine.  However – the problem with this is that no one knows if your child will actually ever develop speech. If a child is taught Makaton at a young age, and after a few years is still no closer to developing speech, they will likely have to learn Auslan anyway – and since the two are not the same it is kind of like being taught French and then being told people won’t understand French so you will now have to learn German. Why can’t children simply be taught key signs from the Auslan vocabulary?

ImageThere are large communities of people (adults) who communicate using sign language, however there are not many who communicate using Makaton.  The fact that people who are deaf or for some other reason not expected to ever speak verbally, are taught Auslan from the outset rather than Makaton shows that in the long term, Auslan is better. Also, the Makaton vocabulary only has about 450 signs, whereas Auslan has thousands of signs and is a complete language rather than just a basic entry-level communication tool.

So now I have been left wondering if I am really doing the right thing for Harry by teaching him Makaton.  Should I instead be teaching him Auslan?  I still have hope that one day he will develop speech, but I don’t want him to be disadvantaged if he doesn’t.  Most parents have times when they worry about what is best for their child, however it is a constant worry for parents of special needs children, and is exacerbated by the constant comments and advice received from specialists with differing views combined with the numerous comments and opinions received from non-specialist, albeit well-meaning, people with no actual experience.

Perhaps I am naive and a little silly for trusting and following what Harry’s specialists tell me – but I thought it was their job to know best.  Having now discovered this argument, I am left feeling upset and a little like I have been kept in the dark.  Oh well, like with everything new that has crossed my path since Harry’s birth nearly three years ago, I will once again reacquaint myself with my good friend Google, and delve into some speech and language research – and will have a chat to Harry’s speech therapist next week!

 
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Posted by on October 5, 2012 in Uncategorized

 

How embarrassing!!

I recently found myself consoling and counselling a dear friend, after his (second) wife told him she sometimes feels embarrassed when she is out with his 10 year old daughter who has autism spectrum disorder combined with a cognitive delay.  She went on to say that sometimes she wished that his daughter was a “normal” 10 year old. Image

At first I was outraged at the comment, as was my friend.  It made me wonder how many people would feel embarrassed to be out in public with my son – to me, this comment was highly offensive.  However, not wanting to fuel an argument between my friend and his wife, and knowing that she is a lovely lady who would never say anything like that that in malice, I tried to be objective. 

While the statement was without doubt very thoughtless, and regardless of personal experiences most people would know better than to say that to the parent of a special needs child – or to the parent of any child for that matter.  However, that aside, I started to think how “embarrassing” children are, and the difficulties of becoming a stepmother, especially to a child with special needs.

ImageThere are number of experiences involved in being a parent and in particular a mother.  Firstly, there is the birth.  The birth of your baby leaves you with no shame and very little dignity.  These days, if my bosom escaped from my shirt while walking down the street, I would barely bat an eyelid.  As your child grows, the general population will witness you struggling to mitigate tantrums in shopping centres, or watch as you crawl on hands and knees trying to find a dummy (pacifier) or favourite toy that has been thrown under the shelves in the supermarket isle, they will vomit in public places, have accidents where they don’t make it to the toilet in time… the list goes on. 

However, while enduring these acts of “toddlerism”, we are also getting to know our child.  As our little monkeys grow and develop, so does our bond with them.  We become resilient and immune to the embarrassment that our children can sometimes cause, and to an extent, to the stares and “looks of horror” that come our way.  This is the same for most parents, and is not limited to parents of special needs children. 

ImageHowever, if you remember how you felt the first time your child had a real tantrum in a public place, it is perhaps easy to see how a “non-parent” may in fact feel embarrassed when out with a child who is misbehaving, or behaving in a way that attracts attention – bearing in mind that they have not had the “training” that is thrust upon new parents and caregivers, nor have they had the opportunity to develop such a momentous bond with the child – although, that is not to say they can’t, or wont, if given the opportunity.

 
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Posted by on October 1, 2012 in Uncategorized

 

The horror… I mean “reality”… of epilepsy

In our bid to treat everyone as equals, have we failed to realise that we are not equal, and that there are some very good reasons for this…??

Most people, including school teachers, see the children with epilepsy on their good days. Parents keep their kids at home when they are having 30+ seizures a day. And no, this is not an exaggeration. My son was having 20+ a day, and I know personally of children having more than 70 seizures a day. These parents choose between risking a severe seizure and denying their child a birthday party. If they have the party the child will get excited, and more than likely will result in severe seizures – do you deny your child this?

It is very common for people who have not had personal experiences with disabilities to not truly comprehend the impact it can have on a person’s life. This is not their fault. They have no way of knowing without having had a personal experience. However, this does not grant them the right to assume that they know best.
A common issue that keeps popping up in my social circles lately is the lack of understanding of epilepsy in schools, and parents being told there is “nothing wrong” with their child, that there is “no good reason” why they are under-achieving in the classroom, and that the parents should be doing more at home. The main misconception is that a person with epilepsy is perfectly fine and completely unaffected by epilepsy most days, and when they have a seizure they experience an “event” and then return to normal. I do not claim to be an expert on epilepsy, but there are a few things that everyone should know.

Epilepsy effects people in different ways. Some do manage to control it with medication and it has little impact on their day to day life for the majority of the time. Others however, are not able to completely control their epilepsy, and these are the people I am referring to in this post. Please note, there is so much that can be said on the topic of epilepsy – I am just scratching the surface, and trying my best to be concise.

Most people have heard of grand mal seizures – this is the old terminology for a tonic-clonic seizure. This type of seizure is a generalized seizure which affects the entire brain, resulting in a “full body shaking type seizure”. However there are many other types of seizures, some of which actually cause more disruption to the brain and to daily life. Focal, or partial seizures affect only specific parts of the brain. They can however affect more than one part of the brain, and can lead to generalized seizures. Part of the difficulty in controlling seizures is that most medication is for a specific type of seizure – this results in some children (or adults) taking eight or more medications daily in an attempt to manage seizures.

Sometimes medication can’t control all of the symptoms of epilepsy. If a child is experiencing “abnormal background activity” in their brain, it means that there is “firing” going on that shouldn’t be. This can slow thought processes and delay learning and development. By this I mean the child may be slow to learn to speak, or to develop further speech, to read, write, and progress in general. Further, if the child experiences “absence seizures”, during which consciousness is impaired, again resulting in delays in development. If a child is essentially only conscious for half of their lesson, they can’t possibly learn like the other kids.
But epilepsy means more than this. Too much excitement, getting tired, catching a cold, stress, sudden change in environmental temperature, and many other things, can lead to the onset of a seizure. If there is a nasty flu at school a child with epilepsy may be required to stay at home to avoid getting sick. If they get too tired they may not be able to attend school. It sounds very simple – why not put them to bed earlier…? Often, the many small seizures and abnormal brain activity can be more draining than a larger seizure.

Parents of these kids worry constantly. They have no idea when the next seizure might be, or how severe. They don’t know if it will mean a night in hospital, or maybe a week. The next time you dismiss epilepsy and don’t give it another thought – ask yourself: if you had to, could you administer a needle with rescue medication to a seizing 5 year old? Could you remember to watch the clock from the minute the seizure started to know the exact length of the seizure? Could you remain calm enough to relay all of the information to the ambulance officers? Have you taken a walk in their shoes? No?  Well in that case, maybe you should take their word as gospel, and keep your opinions about the reasons for their child’s academic struggles to yourself.

NB.  Epilepsy Parents Australia have read this article and given me permission to post the link to their facebook page – it is a wonderful place to go for support from people who actually do know what you are going through.  Feel free to visit: https://www.facebook.com/groups/epilepsyparentsaustralia/

 
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Posted by on September 15, 2012 in Uncategorized

 

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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What’s in a label…?

There are many arguments against “labelling” kids.  People don’t want their child to be labelled and known as the “fat kid” the “dumb kid”, the “naughty kid”, the “ugly kid”, the “slow kid”, etc – and that is completely understandable, especially as these particular labels have negative connotations.  However, when it comes to special needs, a label – or professional diagnosis – is often actually really important.  As much as we may not want our child labelled as being afflicted with a certain attribute or special need for fear that they will be treated differently, obtaining a firm diagnosis is the first step towards really helping your child.

The process of obtaining a diagnosis is often not an easy one.  In our case it was easier than most, as it was confirmed that Harry had suffered from a stroke and subsequent brain damage when he was three days old.  However for most, the process goes something like this:  Parents, or often grandparents, will notice something not quite right with their child.  This may be to do with mannerisms, learning ability, speech, coordination, or generally not meeting milestones.  The parents will then approach their doctor or paediatrician, and will often be treated like they are crazy overprotective hypochondriac parents who don’t know what they are talking about.  The parents will push harder, and try to get second and sometimes third opinions from various specialists, and will often be told that they will assess the child at some point in the future.

You will spend more and more time watching your child closely, looking out for signs of this and that.  Sometimes you may think you have a fair idea of what is “wrong” with your child, but regardless of how prepared you think you are, being told the formal diagnosis by a professional will whip the floor out from under you.  You will feel like you’ve been punched in the stomach.  Regardless of what you may have prepared yourself for, the next few months will more than likely be absolute hell.  It is important to know that it is normal and perfectly okay to “grieve the loss of the child you wanted or hoped for”.  This doesn’t mean you don’t love and accept the child you have.  Before your child is even born you will have had hopes and dreams for him/her, which may no longer be possible.  The child you must grieve for is an imaginary child that you thought you would have.  I was offended at the thought of this when it was first presented to me.  I couldn’t see how I could possibly do this without it reflecting that I wasn’t 100% happy with the child I have.  But this is not the case.  It is a process of dealing with loss of hopes and dreams, and fighting with your own guilt makes it even harder.  I love my son, and I can honestly say I have NEVER wished him to be any different, or wished he didn’t have cerebral palsy.  However, I cried every single day for the first two-three months of his life, and then every other day, and then most weeks, for at least the entire first year of his life (no, I did not have post natal depression).  I obviously needed to grieve for something.

So what do I do now?

Firstly, the most important thing of all is to remember that your child is exactly the same person they were yesterday – they haven’t suddenly acquired a physical impairment or mental condition – they already had it, they just didn’t have the label.  (Obviously some diagnoses are worse than others, and I am not talking about finding out your child has a life-threatening illness or condition.)

The diagnosis or label is actually quite valuable.  Often without the label the services available to your child are limited.  Most government funded services have quite specific eligibility criteria and without a formal diagnosis these options will not be available to you, no matter how glaringly obvious the situation is.  Once you have a diagnosis, you will often find that many doors open for you.  However, you will also find that you have no idea how to find these doors – and no one will tell you.  There is a huge information gap (in Queensland at least) – somewhere along the way someone is meant to point you in the right direction, right…? Wrong.  The best way to find out information is to find a group of parents of special needs children, preferably with the same issues as your child.  These parents will be your savours.

As a parent, you are your child’s advocate.  If you have a concern – fight.  Fight to make sure that your doctor or paediatrician takes it seriously.  Fight for all your monetary entitlements.  Fight for any services you are entitled to.  Fight to have your child assessed and reassessed if necessary.  Fight for people to return your calls – be a pitbull, you are not trying to make friends, you are trying to get your child the help you believe he or she needs.  A mother (or father) often really does know best – and don’t let anyone tell you different.

 
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Posted by on September 10, 2012 in Uncategorized

 

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To those who “mean well” and don’t know what to say…

Short answer – feel free to ask me anything at all but please do not compare my child to the single person you know with a disability, whose impairment is nothing at like my son’s – and please don’t act like you have expert knowledge on what will “fix” my child, based on your experiences with this one person.

In all honesty, I don’t notice this as much as I used to, or at least I don’t get as upset as I did – mostly because I now understand that people honestly do mean well, but often don’t know what else to say.  My son has left hemiplegic cerebral palsy, a left hemianopia (visual field defect), and epilepsy.  There is no child that has the exact same problems to the exact same extent, and if there was, it wouldn’t guarantee that they would have the exact same recovery.  So – telling me a story about a child you’ve heard about but never actually met, or has a random condition other than CP, is not comforting.  Don’t get me wrong, I love hearing about any and all kids succeeding, especially kids with special needs – of all kinds.  But simply being told a story is not the same as having your child compared to the child who is the subject of that story.  And in my experience, most people are telling you the story because they think they are giving you “hope”.

ImageSo many people try to say the right thing, and I understand that they mean well.  However, especially in the early stages, having a special needs child is emotionally very difficult – I am yet to find out if it gets easier!  Hearing stories of other kids can sometimes have the opposite effect of that which is intended.  Also, it is important to my emotional well being that I focus on what is real and what I can do today.  A pie in the sky comment about something someone thinks may “fix” my child can upset the careful balance that is my emotional state.

When people say “he’ll be running before you know it” what they don’t understand is that having cerebral palsy means that part of Harry’s brain is damaged, and so the muscles in his arm and leg don’t receive messages from the brain the way they are meant to.  This may improve over time , and hopefully one day he will run – but not with the ease implied by such comments.  It will take a huge amount of effort and therapy, and if he ever stops doing therapy to help his muscles, he will regress.

Harry also doesn’t talk.  It is apparently common for kids with CP to be delayed with speech, or for speech to not develop at all, so it is a bit of a (not so fun) game of wait and see, and in the meantime he is learning sign language.  NEWS FLASH: when you give me your expert advice that if I talk to him more and narrate my entire day, that it will make him start talking – it makes me want to slap you.  Do you seriously not think I realise that talking is important, and that I already do that?  I have spent nearly three years speaking all day every day, narrating my every move to someone who doesn’t talk back.  Do you realise that to me, this implies that you think my son does not speak because I am not doing enough?  How can you possibly say that to me when I’ve just finished explaining that Harry attends physio, OT, speech therapy, and regular neurologist appointments.  Surely if it was that easy to get him to speak then Harry’s entire speech therapy regime would consist of “talk to him more”…??

I know people often don’t know what the right thing is to say – I am around special needs kids every week, none of which have CP, and I often don’t know what to say.  I stick to “how’s it going”, and try to ask questions rather than to offer solutions for things I don’t know much about.  Most of the time we (parents of special needs kids) like being asked questions – it offers us a chance to talk about our concerns, but more often it is an opportunity to speak proudly of our child’s progress.  We want you to understand what our kids have to overcome, and to see how far they have already come and be as proud as we are, not to try to fix things for us.

 
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Posted by on September 3, 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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