This is No 7 plus Nos 1 to 6 .... plus the diary from the Bali trip (where Team Kaylee concept began)
=================================
Hi everyone
The last edition was a bit of a misery dump, eh? It is hard for us to keep perspective on the situation ... writing this helps me to do that.
Every day is made up of good moments and bad moments .... if the good moments outnumber the bad then we are 're-charging the batteries'. The converse is also true unfortunately.
What makes life tough is when our batteries are nearly flat to start the day .... and then we have some 'baddies' and they seem even worse than usual. Our sense of perspective is skewed by the state of our 'battery'.
Since Saturday (#6), Kaylia has been on a roller-coaster as we struggle get the medication level right. At times she is on a high and is excited to be around us ... then she goes down into frustration & screaming. By Wednesday night we'd got the medication to a level that was controlling anxiety and not giving her headaches .... but then she woke up at 11pm .... and she was wide awake! By 4:30am I'd persuaded her to go to sleep. At times like these I wish I could take her medication because I was getting pretty angry. It was "Take a deep breath" time!!
Over the next few days we added new medications to the mix - the first one aiming to increase the 'calming effect' without headaches and the second to counteract the insomnia produced by the 'calming' medication. With all the changes, we are having to keep good records so we can see what makes a difference and how.
After two days on this mix, Kaylee is sleeping better. She is still a little more 'stimmy' than we'd like but the level doesn't seem to be interfering with therapy or school .... so we will keep the mix at this level and watch ...........
Thursday night she crashed! Big time! She just lasted through the day at school and then it was off to bed. She slept for 14 hours! Strangely, the bad nights don't always mean a bad day at school the next day.
You may recall my comments about the problem of telling when she had an earache? Well Ebay has come to the rescue! I found an otoscope for $6.99 including postage ... it has arrived and although very basic, it does its job well and we now have trained Kaylia to let me look in her ears with the otoscope. (When visiting the GP, this has always been a struggle - not any more!) So .... now we can keep checking her ears and looking for visual signs that she might be having ear problems.
Till next post!
Ian
------------------------------------------------------------------------------------------------
Hi everyone
I haven't been sure how people have been feeling about having our email sent to them ... so I have changed format!
The "Team Kaylee Newsletter" is now a blog!
The link is:
....... (you're already there!)
Just copy & paste this into your browser and it will take you to all the latest news about Kaylia.
See you there!
Ian
------------------------------------------------------------------------------------------------
Newsletter #6 8th May 2010
Whhoooaaa there ...... I spoke too soon yesterday!
Today was another day in hell with Kaylia crying almost non-stop till about midday.
The day started normally and we went off for a drive in the car (visiting friends) but as soon as we arrived there, it was clear that she was in high anxiety and she wanted to leave. So it was back in the car and we returned home. At home Kaylia immediately began crying and building up to a 'melt-down'. So drastic measures we needed and it was back in the car for a long drive.
(When Kaylia is in high anxiety, the car always calms her and she often has a sleep while we drive.)
I realised that the new medication (Seroquel) seemed to be having no effect at all. I recalled that yesterday was the first day without Risperdal and so maybe there was some residual effect then .... but today it seemed that the Risperdal had fully worn off.
At midday I was desperate and tried a very low dose (0.2ml) of Risperdal ..... within a short time Kaylia began to calm down and by 3pm, she was back to being human again. Maybe a mixture of Seroquel with a very low dose of Risperdal might work. This may give her the calming effect without the bad side-effects.
I will check this out with her doctor on Monday.
Now (7:30pm) she is getting anxious again and we're both very tired. Tonight will probably be a doozy!
Till tomorrow ......
Ian
------------------------------------------------------------------------------------------------
Newsletter #5 7th May 2010
Hi all
Firstly - a big thankyou to the "Team Members" who write notes of encouragement. Each thought that you send our way adds to our emotional stamina.
Secondly, a big welcome to the newest member of 'Team Kaylee' ..... Linda .... who will join us in a few weeks to replace Sophie. Sophie will be resuming her travels - round the 'top end' and down the east coast before heading back to Quebec.
Linda is from the Netherlands and is in the middle of a l.o.o.n.g trip .... she has spent time in India and Indonesia.
(In addition, we are looking forward to Anni - July to December 2007 - who is coming to visit again in June/July. That's going to be a busy 3 weeks and Kaylia will be so excited!)
Now .... the latest in the exploits of K!
After seeing the GP and noting that the ear infection was gone, we realised that Kaylia was still asking for painkillers on a regular basis .... so back to the reading .... and we found that headaches can be a side effect of the Riserdal.
We then started her on a new medication (Seroquel) and the headaches appear to have stopped. She has now had 48 hours without painkillers! The Seroquel could be interesting as it may not produce the raging hunger that was a problem with Risperdal. (Kaylia went from 28kg to 34kg in the 3 months - roughly 25% weight gain!) Since starting the Seroquel, the behaviour improvements (reduced anxiety and reduced stimming) have continued while the appetite seems to have returned to her usual. This means that she doesn't eat much at all!
Seroquel may have an effect of sleepiness - this could be quite good! (We have had some torrid nights lately .... has anyone else noticed the 'new moon' effect?) Kaylia can be really upset by a new moon - the new moon night last week meant that she was awake from 1am to 6am! ... So I was too!
In the old days, this would have meant hours of crying .... but now I have most of her favourite DVDs on an iPod Touch .... and this is very calming for her. She can settle down watching 'ABC Playschool' or 'Baby Einstein' .... and she will often drift off to sleep again.
So ... between Newsletter #4 and #5, we have descended into the depths of frustration & despair ... and then risen to the surface again!
Until the next thrilling instalment ........
Ian & Naomi
------------------------------------------------------------------------------------------------
Newsletter #4 19th April
I was going to answer this question directly but I thought that many of you probably wonder too ... so here is a broadcast answer!
Wot's stimming?
It's a term which includes any behaviour which is done to stimulate. Things which normal people might do become an exaggeration in ASD people ... you might be aware of Kaylia's hand flapping? Lot's of people flap hands when excited and it isn't a stim .... but for Kaylia, the handflapping is something which she can do to excess and she does it because in her crazy little world, it is pleasurable in itself. Handflapping is a very common stim.
Kids stim on other things too .... Kaylia with a dingle dangle is a little world of stim! (A 'dingle dangle' is any object whch can be held up and dangled.) Some kids stim on light or shadow. Stimming can be a really bad thing when they stim on sensations - scratching can lead to them taking their skin off or harming their eyes.
We use Kaylia's stimming on 'dingle-dangles' as a tool to encourage eating - carrots cut in a long strip can be 'dangled' ..... spaghetti is a natural dangle! Meat cut into strips can be a dangle.
Stimming can be a sign of stress or anxiety instead of pleasure .... then it can lead to severe self harming behaviour. Kaylia has particular behavioural clues which tell us when she is anxious & stressed.
For Kaylia, the stimming makes it hard for her to give attention to things that are being taught to her.
So when the medication reduces the stimming behaviour, then she learns better.
(For those of you that know, please forgive the explanation!)
Ian
------------------------------------------------------------------------------------------------
Newsletter #3 18th April 2010
Phew!
The school holidays are nearly over .... just as well! It has been very hard. In addition to the normal "children at home on holidays" stuff (which of course is more worse because of the autism) we had a case of adjustment of medication.
Kaylia's body gets used to the MM (marvelous medication) after a while. The liver 'catches up' and begins to process more of the MM ... so the MM available to affect the brain gets less. (The dose began at 0.25ml per day and has crept up to 0.5 ml/day) We are now experimenting with a new dosage between 0.6 and 0.75 ml/day.
The reducing effect began last week end and showed by increased stimming, anxiety and her appetite going down ... meaning less fibre and hence she became constipated .... this means anxiety & pain .... so she sleeps badly. We realised what was happenning within a couple of days and began to correct ... but it takes time to get the balance right again.
In the mean time, Kaylia's bad nights mean higher stress for us. Last night was particularly bad and it was after 10pm before she slept .... and then we both had to recover from hours of trying to calm her and get her to sleep. It's at times like this that the whole situation seems overwhelming and hopeless. I really feel for the single parent families that are dealing with ASD .... even for a well organised couple, it is very, very hard ... to handle it on your own without any support must be horrific.
Today Kaylia and Ian went to Kings Park in the morning and we realised that the Red Bull Air Race was going to be on! We were early so we got good parking and a nice shady spot .... Kaylia was able to stim her heart out in the wind and in the bushes .... while I was able to watch the planes! When doing these trips we pack a shopping bag of munchies (bananas, apples, carrots, tomatoes, strawberries, rice crackers etc) and she forages all morning!
The time away gives Naomi a chance to catch up on her business report writing ..... it's always a battle to fit in the demands of Kaylia, business and family.
Ian
------------------------------------------------------------------------------------------------
Newsletter #2 24th March 2010
Hi all
It's now nearly 2 months since I sent out the first 'Team Kaylee' newsletter and I'm receiving questions from people ....
Soooo ......
The new medication has made a marvelous difference for Kaylia. She has been on Risperdal for 2 months and the improvement in her ability to concentrate has been clear. She is now getting much more benefit from therapy and school, she is less anxious and she is much easier to handle around home. Fortunately, the drug does not detract from her delightful personality!
However, Risperdal does have the effect of making her constantly hungry and she is piling on weight. She used to be difficult to interest in food but now she eats all the time if she can. So much so that she can be unable to actually fit anything in her tummy ... but she still tries to eat more.
We are tackling this problem by cutting out all 'rubbish' foods & sugar. In addition, we are trying to make her diet gluten-free to see if this has any effect.
Other developments for her .....
School was having trouble with Kaylia due to her only being given 0.5 aide time - this meant that the structure that she needs couldn't be put in place.
Fortunately, a conference between the school, the Education Department and ourselves resulted in Kaylia being allocated a further 0.5 aide time (temporarily) to allow the issues to be sorted out. This has worked and Kaylia is now much happier and more settled at school.
Naomi & I? We still haven't recovered fully from the experience of the December trip .... but things are looking up. We now have a regular 'time out' on Tuesday evenings where Tina looks after Kaylia while Naomi & I go out for a couple of hours break - usually a visit to Dome where we can sit & read!
Thanks for your thoughts & support!
Ian & Naomi
------------------------------------------------------------------------------------------------
Newsletter #1 29th January 2010
Hello all
You're receiving this email because you care about Kaylia .... you're an official member of "Team Kaylee"!
In the two weeks after Christmas (when we were in Bali), Naomi & I realised that the task of raising Kaylia is becoming an even greater challenge ..... we need a support network!
Unfortunately, the nature of autism dictates that practical assistance requires a level of commitment which is not realistic for most people .... but emotional / mental / spiritual support is entirely possible and welcomed!
While searching the net for answers and shared experiences, one common experience for parents of an autistic child is the feeling that very few people understand just how totally consuming and isolating the experience can be. An extreme example of this is Trudy Stuernagel ( http://www.ageofautism.com/2009/12/autism-regression-aggression.html?cid=6a00d8357f3f2969e2012876567225970c ) who did not have a support network and has died as a result! While we don't agree with some of the treatment methods proposed on this website, the experiences described by parents (such as Teresa Conrick) are sobering.
We have to get it right!
Good news! On a recent trip to the paediatrician, a new medication (Risperdal) was prescribed ...... and it works!! We were 'holding our breath' as we had tried all the other drugs and they didn't work .... so we were elated that Risperdal seems to reduce Kaylia's problems without producing any significant side effects. It is amazing as the dose is minute (0.125ml) - about half a drop! It is difficult to measure but hey! it works!
Any 'Team Kaylee" members who wants a way 'lend a hand' in a practical way ..... consider this - Kaylia loves going for a drive in the car and so you would be welcome to come and take her for a drive. It doesn't matter where .... she just loves to see the world passing by.
I will try to keep you all updated with changes and progress. Another time, I'll write about Kaylia's daily routine and interests .... or about the wonderful people who come to live with us as aupairs and help us to stay sane.
Bye for now
Ian & Naomi
=================================
Hi everyone
The last edition was a bit of a misery dump, eh? It is hard for us to keep perspective on the situation ... writing this helps me to do that.
Every day is made up of good moments and bad moments .... if the good moments outnumber the bad then we are 're-charging the batteries'. The converse is also true unfortunately.
What makes life tough is when our batteries are nearly flat to start the day .... and then we have some 'baddies' and they seem even worse than usual. Our sense of perspective is skewed by the state of our 'battery'.
Since Saturday (#6), Kaylia has been on a roller-coaster as we struggle get the medication level right. At times she is on a high and is excited to be around us ... then she goes down into frustration & screaming. By Wednesday night we'd got the medication to a level that was controlling anxiety and not giving her headaches .... but then she woke up at 11pm .... and she was wide awake! By 4:30am I'd persuaded her to go to sleep. At times like these I wish I could take her medication because I was getting pretty angry. It was "Take a deep breath" time!!
Over the next few days we added new medications to the mix - the first one aiming to increase the 'calming effect' without headaches and the second to counteract the insomnia produced by the 'calming' medication. With all the changes, we are having to keep good records so we can see what makes a difference and how.
After two days on this mix, Kaylee is sleeping better. She is still a little more 'stimmy' than we'd like but the level doesn't seem to be interfering with therapy or school .... so we will keep the mix at this level and watch ...........
Thursday night she crashed! Big time! She just lasted through the day at school and then it was off to bed. She slept for 14 hours! Strangely, the bad nights don't always mean a bad day at school the next day.
You may recall my comments about the problem of telling when she had an earache? Well Ebay has come to the rescue! I found an otoscope for $6.99 including postage ... it has arrived and although very basic, it does its job well and we now have trained Kaylia to let me look in her ears with the otoscope. (When visiting the GP, this has always been a struggle - not any more!) So .... now we can keep checking her ears and looking for visual signs that she might be having ear problems.
Till next post!
Ian
------------------------------------------------------------------------------------------------
Hi everyone
I haven't been sure how people have been feeling about having our email sent to them ... so I have changed format!
The "Team Kaylee Newsletter" is now a blog!
The link is:
....... (you're already there!)
Just copy & paste this into your browser and it will take you to all the latest news about Kaylia.
See you there!
Ian
------------------------------------------------------------------------------------------------
Newsletter #6 8th May 2010
Whhoooaaa there ...... I spoke too soon yesterday!
Today was another day in hell with Kaylia crying almost non-stop till about midday.
The day started normally and we went off for a drive in the car (visiting friends) but as soon as we arrived there, it was clear that she was in high anxiety and she wanted to leave. So it was back in the car and we returned home. At home Kaylia immediately began crying and building up to a 'melt-down'. So drastic measures we needed and it was back in the car for a long drive.
(When Kaylia is in high anxiety, the car always calms her and she often has a sleep while we drive.)
I realised that the new medication (Seroquel) seemed to be having no effect at all. I recalled that yesterday was the first day without Risperdal and so maybe there was some residual effect then .... but today it seemed that the Risperdal had fully worn off.
At midday I was desperate and tried a very low dose (0.2ml) of Risperdal ..... within a short time Kaylia began to calm down and by 3pm, she was back to being human again. Maybe a mixture of Seroquel with a very low dose of Risperdal might work. This may give her the calming effect without the bad side-effects.
I will check this out with her doctor on Monday.
Now (7:30pm) she is getting anxious again and we're both very tired. Tonight will probably be a doozy!
Till tomorrow ......
Ian
------------------------------------------------------------------------------------------------
Newsletter #5 7th May 2010
Hi all
Firstly - a big thankyou to the "Team Members" who write notes of encouragement. Each thought that you send our way adds to our emotional stamina.
Secondly, a big welcome to the newest member of 'Team Kaylee' ..... Linda .... who will join us in a few weeks to replace Sophie. Sophie will be resuming her travels - round the 'top end' and down the east coast before heading back to Quebec.
Linda is from the Netherlands and is in the middle of a l.o.o.n.g trip .... she has spent time in India and Indonesia.
(In addition, we are looking forward to Anni - July to December 2007 - who is coming to visit again in June/July. That's going to be a busy 3 weeks and Kaylia will be so excited!)
Now .... the latest in the exploits of K!
After seeing the GP and noting that the ear infection was gone, we realised that Kaylia was still asking for painkillers on a regular basis .... so back to the reading .... and we found that headaches can be a side effect of the Riserdal.
We then started her on a new medication (Seroquel) and the headaches appear to have stopped. She has now had 48 hours without painkillers! The Seroquel could be interesting as it may not produce the raging hunger that was a problem with Risperdal. (Kaylia went from 28kg to 34kg in the 3 months - roughly 25% weight gain!) Since starting the Seroquel, the behaviour improvements (reduced anxiety and reduced stimming) have continued while the appetite seems to have returned to her usual. This means that she doesn't eat much at all!
Seroquel may have an effect of sleepiness - this could be quite good! (We have had some torrid nights lately .... has anyone else noticed the 'new moon' effect?) Kaylia can be really upset by a new moon - the new moon night last week meant that she was awake from 1am to 6am! ... So I was too!
In the old days, this would have meant hours of crying .... but now I have most of her favourite DVDs on an iPod Touch .... and this is very calming for her. She can settle down watching 'ABC Playschool' or 'Baby Einstein' .... and she will often drift off to sleep again.
So ... between Newsletter #4 and #5, we have descended into the depths of frustration & despair ... and then risen to the surface again!
Until the next thrilling instalment ........
Ian & Naomi
------------------------------------------------------------------------------------------------
Newsletter #4 19th April
I was going to answer this question directly but I thought that many of you probably wonder too ... so here is a broadcast answer!
Wot's stimming?
It's a term which includes any behaviour which is done to stimulate. Things which normal people might do become an exaggeration in ASD people ... you might be aware of Kaylia's hand flapping? Lot's of people flap hands when excited and it isn't a stim .... but for Kaylia, the handflapping is something which she can do to excess and she does it because in her crazy little world, it is pleasurable in itself. Handflapping is a very common stim.
Kids stim on other things too .... Kaylia with a dingle dangle is a little world of stim! (A 'dingle dangle' is any object whch can be held up and dangled.) Some kids stim on light or shadow. Stimming can be a really bad thing when they stim on sensations - scratching can lead to them taking their skin off or harming their eyes.
We use Kaylia's stimming on 'dingle-dangles' as a tool to encourage eating - carrots cut in a long strip can be 'dangled' ..... spaghetti is a natural dangle! Meat cut into strips can be a dangle.
Stimming can be a sign of stress or anxiety instead of pleasure .... then it can lead to severe self harming behaviour. Kaylia has particular behavioural clues which tell us when she is anxious & stressed.
For Kaylia, the stimming makes it hard for her to give attention to things that are being taught to her.
So when the medication reduces the stimming behaviour, then she learns better.
(For those of you that know, please forgive the explanation!)
Ian
------------------------------------------------------------------------------------------------
Newsletter #3 18th April 2010
Phew!
The school holidays are nearly over .... just as well! It has been very hard. In addition to the normal "children at home on holidays" stuff (which of course is more worse because of the autism) we had a case of adjustment of medication.
Kaylia's body gets used to the MM (marvelous medication) after a while. The liver 'catches up' and begins to process more of the MM ... so the MM available to affect the brain gets less. (The dose began at 0.25ml per day and has crept up to 0.5 ml/day) We are now experimenting with a new dosage between 0.6 and 0.75 ml/day.
The reducing effect began last week end and showed by increased stimming, anxiety and her appetite going down ... meaning less fibre and hence she became constipated .... this means anxiety & pain .... so she sleeps badly. We realised what was happenning within a couple of days and began to correct ... but it takes time to get the balance right again.
In the mean time, Kaylia's bad nights mean higher stress for us. Last night was particularly bad and it was after 10pm before she slept .... and then we both had to recover from hours of trying to calm her and get her to sleep. It's at times like this that the whole situation seems overwhelming and hopeless. I really feel for the single parent families that are dealing with ASD .... even for a well organised couple, it is very, very hard ... to handle it on your own without any support must be horrific.
Today Kaylia and Ian went to Kings Park in the morning and we realised that the Red Bull Air Race was going to be on! We were early so we got good parking and a nice shady spot .... Kaylia was able to stim her heart out in the wind and in the bushes .... while I was able to watch the planes! When doing these trips we pack a shopping bag of munchies (bananas, apples, carrots, tomatoes, strawberries, rice crackers etc) and she forages all morning!
The time away gives Naomi a chance to catch up on her business report writing ..... it's always a battle to fit in the demands of Kaylia, business and family.
Ian
------------------------------------------------------------------------------------------------
Newsletter #2 24th March 2010
Hi all
It's now nearly 2 months since I sent out the first 'Team Kaylee' newsletter and I'm receiving questions from people ....
Soooo ......
The new medication has made a marvelous difference for Kaylia. She has been on Risperdal for 2 months and the improvement in her ability to concentrate has been clear. She is now getting much more benefit from therapy and school, she is less anxious and she is much easier to handle around home. Fortunately, the drug does not detract from her delightful personality!
However, Risperdal does have the effect of making her constantly hungry and she is piling on weight. She used to be difficult to interest in food but now she eats all the time if she can. So much so that she can be unable to actually fit anything in her tummy ... but she still tries to eat more.
We are tackling this problem by cutting out all 'rubbish' foods & sugar. In addition, we are trying to make her diet gluten-free to see if this has any effect.
Other developments for her .....
School was having trouble with Kaylia due to her only being given 0.5 aide time - this meant that the structure that she needs couldn't be put in place.
Fortunately, a conference between the school, the Education Department and ourselves resulted in Kaylia being allocated a further 0.5 aide time (temporarily) to allow the issues to be sorted out. This has worked and Kaylia is now much happier and more settled at school.
Naomi & I? We still haven't recovered fully from the experience of the December trip .... but things are looking up. We now have a regular 'time out' on Tuesday evenings where Tina looks after Kaylia while Naomi & I go out for a couple of hours break - usually a visit to Dome where we can sit & read!
Thanks for your thoughts & support!
Ian & Naomi
------------------------------------------------------------------------------------------------
Newsletter #1 29th January 2010
Hello all
You're receiving this email because you care about Kaylia .... you're an official member of "Team Kaylee"!
In the two weeks after Christmas (when we were in Bali), Naomi & I realised that the task of raising Kaylia is becoming an even greater challenge ..... we need a support network!
Unfortunately, the nature of autism dictates that practical assistance requires a level of commitment which is not realistic for most people .... but emotional / mental / spiritual support is entirely possible and welcomed!
While searching the net for answers and shared experiences, one common experience for parents of an autistic child is the feeling that very few people understand just how totally consuming and isolating the experience can be. An extreme example of this is Trudy Stuernagel ( http://www.ageofautism.com/2009/12/autism-regression-aggression.html?cid=6a00d8357f3f2969e2012876567225970c ) who did not have a support network and has died as a result! While we don't agree with some of the treatment methods proposed on this website, the experiences described by parents (such as Teresa Conrick) are sobering.
We have to get it right!
Good news! On a recent trip to the paediatrician, a new medication (Risperdal) was prescribed ...... and it works!! We were 'holding our breath' as we had tried all the other drugs and they didn't work .... so we were elated that Risperdal seems to reduce Kaylia's problems without producing any significant side effects. It is amazing as the dose is minute (0.125ml) - about half a drop! It is difficult to measure but hey! it works!
Any 'Team Kaylee" members who wants a way 'lend a hand' in a practical way ..... consider this - Kaylia loves going for a drive in the car and so you would be welcome to come and take her for a drive. It doesn't matter where .... she just loves to see the world passing by.
I will try to keep you all updated with changes and progress. Another time, I'll write about Kaylia's daily routine and interests .... or about the wonderful people who come to live with us as aupairs and help us to stay sane.
Bye for now
Ian & Naomi
