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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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Welcome to the world of childcare…

childcare

After having one speech therapist hint several times (and then blatantly outright say) that my son needed to go to childcare, I bit the bullet and decided to look into it.  Her concern was valid – most of the kids he socialises with are not “normally developing children”, and so he was missing out on learning how “normal” children socialise.

baby nappy1   The following day I made an appointment to visit the local childcare centre.  The visit started well with Harry seeming to make friends in his first five minutes of playing – until he got bored and walked away.  Unfortunately when he walked away, the group of boys were able to see the top of his nappy (diaper) poking out from under his shorts.  One of the boys was bigger than the rest, and seemed like the leader – he promptly started shouting “look at the poo bum baby wearing a nappy.  Get him!!”.  And with that, the four boys ran to where my son was quietly minding his own business and started hitting him.

Whilst struggling not to burst into tears, I got the attention of the teacher – who was oblivious to what was going on – and she talked to the boys.  Harry, bless him, had no idea what was going on, or that the boys were being mean.  He walked up to the big mean boy, put his arms around him, and hugged him – and wouldn’t let go.  Stunned, eventually, the other boy returned the hug.

To make it even better, one of the four boys came over to Harry and I and said “I wear a nappy at bedtime”.  Nice to see he wanted Harry to feel better.  daycare_188193901

If only the world could follow the example of children!

That was a month ago.  Harry had his first day in childcare today, and loved it (once he got over me leaving) – needless to say, I chose a different centre…

 
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Posted by on April 29, 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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Five things NOT to say to a special needs parent…

It can be difficult knowing what to say to a parent of a special need child.  Often people are scared to come right out and ask questions, for fear of upsetting or offending – but often what they say instead is far worse, even when said with the very best of intentions…

There are a number of things that are repeatedly said by well intentioned friends, family members, and strangers, which are not particularly well received when it is YOUR child they are talking about:

  1. “I know this child who…”  this almost always is a story about a child with no adverse medical problems, who was a little late to develop – being compared with your child, who has a medical diagnosis, and a real reason why they may never reach some of their milestones.
  2. “You’re lucky that…”  this is often a comparison to a something perceived as worse, but in reality is not anywhere near what you have experienced “.  For example, I recently met a mum whose son was born healthy, and at 6 months developed severe epilepsy – the seizures caused brain damage and severe muscle spasticity.   A family friend once said to her, “gee, you’re lucky he didn’t have febrile convulsions, my daughter had them once and those things are really scary”.
  3. “You’re lucky that…”  Yes, there are two of these!  The second is the comparison to someone worse off than your child.  If you ever say to someone “gee you’re lucky that he didn’t end up with [insert condition]” or “your lucky she’s not as bad as [insert example of worse off child]”, please remember that somewhere, there is a child with that condition, and while it is normal to be grateful things are not “worse”, please have respect for those that have a greater struggle.
  4. “That kid needs some proper discipline.”  In some cases, that might be fair enough to say – however, most of the time, we are not in a position to judge others.  A child having a tantrum at the supermarket may well just be a normal kid who didn’t get to put what they wanted in the trolley.  They may also be a special needs child having a sensory overload, and not able to cope.  This is not discipline related, and really, do you honestly think the parent doesn’t realise their child is screaming in the middle of the supermarket?  Are the dirty looks and covered ears really necessary?
  5. “There’s nothing wrong with him/her”.  I touched on this in a previous post.  Parents spend a lot of time worrying about their child’s development, and their future.  Telling a person who has spent countless days, weeks, months and maybe even years trying to get a diagnosis for their child, and then spending their waking hours trying to overcome that diagnosis, that there is nothing wrong, is NOT helpful.  It is belittling, and honestly, it is like getting a slap in the face.

So, what should you say?  If you don’t know anything about the diagnosis of the child – ask.  Instead of saying, “he looks okay, surely there’s nothing wrong with him”, try saying, “I don’t know much about cerebral palsy (or ASD, or whatever the diagnosis is), could you tell me about it, and how it affects your child”.  Or perhaps say, “are you okay, is there anything I can do to help?”.   Or you could be really crazy, and say “what’s his name, what is his favourite toy, game, colour etc”.

 
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Posted by on March 22, 2012 in Uncategorized

 

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