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The problem with early intervention…

Due to the numerous unknowns that await a child with special needs, the criteria for some (certainly not all) early intervention services are more lenient than those for older children.  This is (I assume) primarily because it is impossible to tell how these children will develop in the following years.  Some will “catch up” to their same-age peer group, while others will fall further behind.

header_eiAn example of this, is the Early Childhood Development Programme (ECDP) run in Queensland, Australia, for children with special needs.  The ECDP is attached to a special school, and provides playgroup, kindergarten, and prep services for children with special needs.  The ECDP is a free service, and is offered for children with any special needs – from things such as developmental delays, physical disabilities, autism spectrum disorder, to profound impairments.

Whilst this is a brilliant service, and I can’t speak highly enough of the ECDP my son attends, there does seem to be one problem – which has recently been brought to light… The playgroup is fantastic for the children, and often having children with a range of disabilities is a good thing – there is no comparison of abilities, and the other parents can relate to you, as they usually have a “general” understanding of some of what you have been through.

Recently a problem arose due to the fact that there is a range of abilities and special needs in the class, ranging from some that appear reasonably mild to some that are more obvious and a little more difficult to control.  A fellow mum, and someone I consider a good friend, began to feel that because of the behaviours displayed by her son (who has autism), that he was “worse” than others in the group.  This has been very upsetting for her, as she always found it a very welcome environment in the past.  These feelings then grew to worry and stress that when her son was older he would be too much for the school staff to handle, and that he would be the worst in the school, etc.

Now, the reason that the ECDP, and other early intervention groups with loose entry criteria contributes to this problem is that when the children move up into the school, they are re-assessed, and must meet a very strict criteria – in actual fact, the majority of the children in the ECDP playgroup won’t be classed as having seveintervre enough disabilities to attend the special school. So the playgroup is not in any way a representative sample of the school environment.  Many of the children in the playgroup will receive so much benefit from the ECDP that they will be able to attend mainstream school.  The children who attend the special school will generally be, for lack of a better word, “worse”, than the majority of the children in the playgroup.

In special needs circles, use of the words “better” and “worse” are not well received, and is highly offensive to tell someone “it’s okay, the kids at the school are much worse than this, your son won’t be as bad as the worst we have”.

Everyone wants to do what is best for their child, regardless of whether or not they have extra needs.  More early intervention services are needed, but maybe one of the biggest ones that has been overlooked is the need for parent (counselling) services.  Parents can do much more for their children if they are looked after too…

 
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Posted by on November 15, 2013 in Uncategorized

 

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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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The Joys of Cruising…

I was recently on a three-week cruise with my husband and son (Harry).  For the first week of the shipscruise, I was relaxing and oblivious to the other passengers.  Harry (who is non-verbal) was squealing quite a lot and thought it a great joke, particularly at inappropriate times, such as dinner – when in a restaurant with 1000 other passengers.

About a week into the trip, a man in his 60s or 70s (I can never tell age) sitting at the next table, turned around, red faced, and yelled, “there is no excuse for a child behaving like that” (or something to that effect).  A lovely man from our table retorted, telling the angry man that he didn’t know the cartoon-megaphonecircumstances and he should back off.  A few minutes later I approached the angry man, apologised for Harry’s squealing, and explained his special needs background.  While he did apologise, he followed it by saying that we “should have made it known beforehand”.  Really – we should make some sort of public announcement??  From then on every time Harry uttered even the smallest noise I would look up and notice people staring.  All meals after that were eaten as quickly as possible, to minimize the time spent in public.

During the remainder of the cruise many people were told of Harry’s special needs as we apologised repeatedly following every noise he made.  Many replied saying they had wondered if he had autism, and could tell there was something “wrong” with him.  It was a stark realisation for me, that he is big enough now that people make assumptions and have expectations – he is tall for his age, so gets mistaken for a 5-year old, who acts like a 2-year old…  This experience led me to think – which is worse, for people to look at us and think we are bad parents, or for them to look at Harry and think something is wrong with him??

 
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Posted by on October 16, 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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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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“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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