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Grrrrr!

To the lady whom, whilst in Kmart today, so eloquently noticed and pointed out that Harry is “too old to have a dummy in his mouth”…   While you may in fact be correct that he is too “old” or too “big” to use a dummy, given what he has gone through and achieved in his short life, I think letting him have a dummy occasionally is not the awful hideous bad parenting that you think it is.

I also want to mention that whilst in the midst of your high and mightiness, you only noticed Harry’s dummy – you did not however notice that he was wearing splints (ankle foot orthoses) on his legs, nor that he was a 4 year old being pushed around a shopping centre in a pram, or that he was making unintelligible sounds that are not recognisable as normal speech for a 4 year old.baby_clipart_pacifier

What I wanted to, but did not say to you, is that Harry is 4 years old.  In his short life he has suffered a stroke, battled through life with only half of his body functioning the way it is meant to, watched from afar as his peers play together in ways that he cannot (and thus gets left out), endured numerous therapy sessions weekly, been poked and prodded by doctors, been pushed to his limits to make small progress with his limbs that refused to work when he wanted them to, suffered from seizures and ongoing abnormal brain activity slowing his learning.  Harry has to think about what he does with his legs when he walks – if he is carrying something large or requiring balance (eg a sandwich on a plate), he will fall over within taking three or four steps, because his brain is concentrating on what he is carrying and stops concentrating on putting his left foot where it is meant to go.  For Harry, walking and running is a mental task as well as a physical one.

Harry didn’t roll over until he was 8 months old, he couldn’t sit unassisted until after his first birthday, he didn’t start walking until he was 2 ½ -3 years old (and we were told he wouldn’t walk unassisted).  At the end of 2012 we were told it was unlikely he would ever have normal speech – and whilst he has not yet achieved that, in December last year Harry started making real progress with speech, and can now say his name, along with many other attempts at words.

Most 4 year olds (in QLD) attend kindergarten two or three days per week.  Harry attends normal mainstream kindergarten five days per fortnight (two days one week, and three days the next), as well as attending special school kindergarten two days each week.  That is four to five days at kindergarten every week, on Tuesdays he has physio after kindy one week and occupational therapy the other week.  Wednesdays he has swimming lessons before kindy and hydrotherapy after kindy.  Friday Harry is taken out of kindy at 10.30 for riding for the disabled horse riding, then dropped back at 12.00, and then taken out at 2pm for speech therapy.  He is not allowed his dummy during any of those time (kindy or therapy) – it stays in the car as a reward for his hard work.  Harry works harder during the week than a lot of others, just to try and slowly catch up to those who don’t even have to try…

So to the lady who today told Harry that he is too old for a dummy – screw you!  Harry had a hospital appointment this morning, where a doctor, and an OT and a physio all poked, prodded, pushed and pulled him, and he was tired.  If he finds a dummy to be comforting, then I say let him have it!

Hate to think what she would have said if she knew he still wears a nappy…

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Posted by on April 17, 2014 in Uncategorized

 

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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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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Football anyone?? (but not everyone!) Or how about school??

My son is 3 years old, and has been walking for about 6 months.  I thought it was the perfect time to get him started in toddler football/soccer.  Toddler football involves running after balls, kicking balls, throwing balls, and knocking over the occasional orange cone.  So I was a little surprised when the first two places I called told me that Harry would not be accepted into their programmes.  This was apparently not due to his physical limitations (weak and uncoordinated left side of his body), but because his development is delayed generally, and by 3 years of age the kids are expected to do what they are told and follow instructions.

Harry-soccer

Hmmm…  Harry may not be the best at understanding, but I personally know of many kids his age who do understand but are actively defiant and choose not to do as they are told – and don’t really see how this is all that different.  I was told parental assistance during the session was not encouraged and they felt it was not the right fit for him.

At 3 years old my son is already being refused opportunities.  Is this a sign of things to come in the following years??  I will admit, I do over-think things, and was most upset at the thought of the numerous opportunities that may not be afforded to Harry during his life due to his differences.

Harry was eventually accepted by a toddler football club, and LOVES it!!! 

However, the whole soccer debacle coincided with a debate that I kept seeing pop up about whether special needs children should be in “special” or “mainstream” schools.  The debate mostly is based around whether normally developing children are disadvantaged by having special-needs children in their class, as they may be disruptive, and are special-needs children getting the learning experience they require when in a mainstream school.  To me, it is bordering on “let’s lock all the special needs kids away so we don’t have to deal with them”, but I am perhaps a little biased.

I do understand both sides of the argument, but Harry didn’t choose to not be able to speak, or for his left side to not work properly.  Surely having him in a mainstream classroom is not that different from having a normally developing child who is not particularly good at sports, and struggles with maths (requiring extra attention)??  And if children are taken from mainstream schools and herded off to special schools, what determines the cut-off??  Why not just create a school for the A students, another school for the B students, etc.  Surely some of the most important lessons learned at school are diversity and acceptance?

More on the debate here http://www.smh.com.au/opinion/society-and-culture/should-children-with-special-needs-be-taught-in-a-mainstream-class-20110701-1gv3a.html

 
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Posted by on February 28, 2013 in Uncategorized

 

I will not apologise!!!

ImageTo all the shop owners who think it is a great idea to put candy bars at the optimum height for my 2 year old son to see and touch – I refuse to apologise when my son messes up your display, or puts a chocolate bar, foil and all, in his mouth, only to be told (by me) to put it back on the shelf!!  

Okay – in all honesty, I do apologise for the mess and I make sure everything is put back neatly, and I will always buy something that my son has drooled on, however I am not convinced that I should!!!

 
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Posted by on November 1, 2012 in Uncategorized