A Can of Worms

The title of this blogpost is due to the fact that by posting it I know I will be opening one. I was going to call it Pandora's Box, but that term always reminds me of the line in Notting Hill, " I knew a girl at school called Pandora. Never got to see her box, though."  Inappropriate but cracks me up every time. This being a serious subject I decided to go with the Worms.


My last post was about my session with Professor Tony Attwood and I said I would dedicate a post to my experience with medication. So this is it...


I think you all know by now I have two boys with Aspergers Syndrome. Before I had children I had some very idealistic visions of how parenthood would be and was also very sure of what type of parent I would be. Of course once I actually gave birth to my first child, those ideals were well and truly blown out of the water! I have also had to re-evaluate my opinion on many things. One of those things has been  the much debated topic of medication. Or as one Mother so nicely put it " Drugging my child".


As I said I have two boys with Aspergers. The younger of the two was actually the first to be diagnosed. Because he had a lot of the classic ASD traits ( repetitive and restrictive behaviours, impairment of social skills and social communication and social imagination and many  obvious sensory issues) it became obvious very early ( age 2) . I of course was not the one to notice these issues but as soon as Pierce began attending Daycare it was very apparent to his teachers that he was extremely different to his peers.


My older Aspie,Ryan was not so obvious. I knew from very early on that something was not quiet right but every time I mentioned it to my GP I was told he was " just a boy" . He also managed to go under the radar at Daycare. I worried constantly about his lack of friends and every time I saw him in the playground he was either alone or engaging in parallel play. Ryan actually managed to fake his way through the early childhood years at daycare much like a girl with Aspergers would. At home was another story. Ryan was mayhem with a capital M ! 


The day Pierce was diagnosed with an ASD ( it started with PDD-NOS and changed to Aspergers after his first review) was also the day of Ryans first parent/ teacher meeting at school. As you can imagine I was reeling from Pierces diagnosis and was a little fragile. I had two boys at school at this stage and had my eldest sons interview first. I walked away from it feeling pretty positive. My eldest boy. Shaun. is Neurotypical and every teachers, and parents,dream.. So I walked into Ryans interview feeling ok considering the days news. 10 minutes later I was in tears and total disbelief..After our initial hellos Ryan's teacher,, who is one of my favourite people,she has taught all my boys and is amazing,, said to me "We have some serious concerns about Ryans behaviour. At present he is not progressing at all and it is almost impossible for him to function in the classroom. Ha has been observed by the school psychologist and she feels he needs to be assessed." I handled this information  really well and promptly burst into tears. 


So now I fast track. And I should add, when I was at Pierces diagnostic appointment and our Paediatrician was giving me a run-down of ASD traits and behaviours I had these little alarm bells sounding in my head, They weren't ringing, they were saying : Ryan, Ryan, Ryan!" 


So,off I went again on my many,, many appointments to Occupational Therapists, Speech Therapists and Psychologists and finally, with reports in hand, our Paediatrician,


By now you are probably wondering why this post is about medication? Well, Ryan has always had some very obvious ASD traits BUT we now know when Ryan is anxious and unregulated he likes to soothe himself with sensory input. He throws himself around.cannot sit still and is unable to  concentrate. Of course all of these things   say one thing..ADHD! So,throughout our diagnostic journey it was noted that Ryan displayed extreme hyperactivity which made it hard to further diagnose although all Therapists involved added he needed further observation for ASD.


Hence came the second hardest decision I have ever made in my life. Our Paediatrician diagnosed Ryan with ADHD/ODD with a note that he had many behaviours consistent with ASD but because his Hyperactivity was so prominent it was impossible to diagnose. We then had a long discussion (1.5 hours) about how to best help Ryan.
I am extremely lucky I have a Paediatrician who is very cautious with medication . We did how ever come to the conclusion that Ryan was unhappy, school was unhappy and I was unhappy. Something needed to change. He recommended Ritalin.I was heartbroken and devastated but also had to admit defeat. I consider myself a good Mum.  I love my children and always put them first. I had run out of options with Ryan, no matter the effort I put in I was achieving nothing. I agreed to a trial of a very low dose. 


We started the trial on a weekend. I was so paranoid about what this drug would do to my child I wanted him close. I explained to Ryan the tablet was to help him have a better day at school and not be so " jiggly" as he has always called his hyperactivity. He was more then willing to take the medication which told me he too was looking for help.Although he was willing he immediately gagged on his tablet.We then tried crushing it into icecream. again he gagged. By this time I was feeling like the worst mother ever and told Ryan to not worry he didn'tneed to take the tablet. He said it's ok Mum I can just swallow it with juice, and he did. 


The next 4 hours were, for me.a revelation.The son I always knew I had and loved so dearly had finally made an appearence to the rest of the world. Unfortunately with this newfound calmness came the unveiling of Ryans ASD.Once his hyperactivity subsided the little issues I was always concerned with were painfully apparent. We then revisited all the above Therapists and back to our Paediatrician who immeciately diagnosed PDD_NOS which again has progressed to Aspergers Syndrome. 


I wish this is where our journey with medication ended but it has not.. Ryan has progressed to a slow release Ritalin and he is on the highest dosage for his weight. We have never had any bad side effects,only positive outcomes. Unfortunately due to his late diagnosis and lack of support at age 7 Ryans behaviour reached crisis point. I had just accessed the Helping Children with Autism funding and had finally enlisted the help of specialists. Because my boys had excellent speech I decided to use our funding on a behavioural program run by a local Autism service. This program allowed an Autism specialised teacher to visit our home once a week and she addressed any issues we   needed help with. She observed Ryan on many occasions and was extremely concerned with how unregulated he was. Ryan suffers from extreme anxiety. This anxiety causes him to overreact to situations and the way  he dealt with this became very frightening. I was relieved to have someone available to explain my boys disorder and how it affects them.It was also fantastic to have someone help me set our home up with visual schedules and other behavioural aides, all of which made an enormous difference to our lives. 
During the first school holiday break after Ryans diagnosis he had his first major breakdown. Luckily our behavioural worker was here on the day. As she said her presence was probably the catalyst for Ryans breakdown. School holidays are tough for our ASD kids, with the change in routine and then having a visitor on top of this was more then he could handle.


I had been having escalating issues with Ryans self harming and dangerous behaviour but on this day it reached crisis point and I could no longer ignore it. Ryan had been self harming for most of his life. starting at age one with head banging, usually on concrete or tiled floors. He then progressed to hitting himself in the head and biting his fingers and toes so severely he would end up with an infection. On this particular  holiday break he progressed to lashing out at his siblings and me in particular. I had no idea how to calm him.So, the day of his Paed review we also had our behavioural therapist visit, Ryan was extremely anxious and  behaving very aggressively. I informed our worker of his mood and she tried to calm him. He immediately decided to abscond and it took me almost an hour to get him back to our house. Less then 15 minutes later Ryan became upset because his brother touched one of his favourite toys. He became uncontrolable and repeatedly threw himself at our sliding glass door. I tried so hard to restrain him but he kept managing to break my hold and hurt me each time. I was so terrified of him breaking the glass and cutting himself It was honestly one of the worst days of my life.Once my beautiful boy calmed down he cried and kept saying I'm sorry mummy ,I'm sorry Mummy. So off we went to our Paediatricians appointment with Ryan rocking and chewing his fingers and not able to talk and me totally at a loss and a written description of what had just occurred. Again, I had an in depth and emotional discussion with our Paediatrician.He  was very concerned with Ryans self harming behaviours and aggression and also  his obsessive behaviours. We both agreed that these behaviours were anxiety driven. I was horrified when our Dr recommended Ryan start taking Risperdal. I had been to a Tony Attwood workshop where he voiced his concerns about Risperdal. He did not elaborate just said it's usage concerned him. After discussing my concerns and our Dr informing me of the pros and cons I agreed to a trial of Risperdal combined with Ritalin LA. I had gone from a person totally against medicating children to my son being on two very contoversial drugs. I felt like a total failure but I was also desperate to help my son.


Now for another  flash forward. Ryan is still on Risperdal and Ritalin LA. We have been lucky enough to suffer no side effects. When discussing the use of Risperdal my Paediatrician told me he had found it helped with socialisation. I told him I thought he was crazy.. He wasn't.My sons self harming behaviours are almost non existent. He has many friends at school and his teachers have remarked how amazing the improvement in his socialisation is. Life with Ryan and for Ryan is still tough but I never question my decision to medicate. Anyone who knows him remarks on the positive changes. We are able to go out as a family. We recently went on a family holiday. None of this would have been possible before. Ryan is not a zombie. He is functioning and able to participate in many things he was never able to. We still have tough moments. He becomes agressive and reverts to his obsessive behaviours but never at the dangerous level he was at before. The thing I feared most (medication) has given back my son and given him a life and opportunities
he never would have had.


I understand the concerns with medication, I had them all, but please don't judge those of us who have made this tough decision. I have had people comment that I have medicated my son to make my life easier. NEVER. Even on meds Ryan is probably harder to care for then most children. I did it for him. He was unhappy and lost and misunderstood  and noone,including Ryan could see the amazing boy I knew was in there.


I asked professor Attwood about his concerns with risperdal and he answered this,
Risperdal masks the problem it doesn't fix it. The child needs Cognitive Behaviour Therapy to learn to address their anxiety and aggression. His concern was parents giving their child this drug and not working on  the underlying cause of their problems. He also said a child under 8 is not able to understand CBT. He said as long as we were working with a therapist and addressing his anxiety and aggression through CBT  with the end result being Ryan not having to take Risperdal it was something he would agree with. I asked how long he would expect Ryan to be on Risperdal ( he is in CBT therapy) and he said it would probably take him two years to learn all he needs to. I honestly was hoping for 6months or less but was also glad to hear his concerns were not due to side effects.


So. My name is Teriann and my son is on medication. Please do not judge me for this or anyone else who has had to make the hard call. I do not do it to get a better nights sleep ( my son who does not sleep is unmedicated). I do it to make Ryans life better and the minute it stops achieving that he will not take it anymore.Please do not phone me and tell me when there is a current affairs show with an episode on the side effects of these drugs. I know them, my Dr knows them.


I did not make this desicion lightly,it is the best thing for my boy.I respect everyones right to their own opinion,please respect mine.


Above all,  close that Can of Worms AND Pandora's Box.


ou will

A Conversation with Tony Attwood

This week I was lucky enough to spend three hours hearing Professor Tony Attwood speak. This is the third year running I have been able to do this and it is something I am extremely grateful for.

My local Early Intervention Service, who have been an invaluable help to me, have Professor Attwood visit every year. As my boys are both at school I do not use the Service officially any more but was lucky enough to again receive an invitation to this event.

I think most people who have a child or family member with Autism and in particular Aspergers syndrome know who Tony Attwood is. For those who don't or want to know more here is a link to his profile on his web page.

http://www.tonyattwood.com.au/index.php?option=com_content&view=article&id=61&Itemid=175

This year it was Tittled "A Conversation with Tony Attwood " and that is what is was. A small room with  about 30 people attending. We were able to ask Professor Attwood questions that were specific to our children. Of course most answers were of interest to everyone. 

For this blog post I thought I would  share some of the questions, and of cause answers, with you all and also some of Professor Attwoods lovely insights into our amazing children. Remember this is my interpretation of Professor Attwoods opinions. I have no qualifications except that of a parent...

SLEEP

Sleep problems are something most children with ASD have in common. Apparently there are a few reasons for this. 

 A normal; person has four sleep stages. The first three are Non REM sleep the fourth is REM sleep - The deep sleep  stage where dreams occur. Some people with ASD are unable to achieve REM sleep, some have seizures while they are sleeping and for alot they do not know how to go BACK to sleep! I have one of those... If his eyes open he is UP and ready to party!

Even more common in ASD people is trouble just getting to sleep. Apparently for Neurotypical people it takes about  20 minutes to get to sleep. For a person with ASD this can be anywhere from 45 minutes up. My six year old takes 2 hours! 

Then there are sensory issues...Is the room too bright (over stimulating), too dark, too hot, too cold. Are the sheets itching? Are their pyjamas too tight?

How to fix it is a more complicated matter. What I learnt on the day is...

Melatonin will help reset a body clock in SOME children. It is a natural substance but Professor Attwood believes it should only be used for a short amount of time. It should take 3-4 days to reset the body clock. Once the clock is reset he recommended ceasing use after day 7. If it hasn't worked by then it won't. He also said that although it is a naturally occurring substance there are no  studies on long term use.

Professor Attwood also recommended a sleep clinic for those children that have chronic sleep problems. I was always under the impression that children with ASD did not need as much sleep as a Neurotypical child. NOT TRUE! They do and when they don't this can contribute to behaviour problems. He said to "fix"these chronic sleep problems you need a report from a sleep clinic so you know HOW your child is sleeping and where the problems are. This is only for chronic sleep problems. Just wanting another hour or two does not qualify and Professor Attwood did not even recommend Melatonin for these minor issues.

RITUALS

 In order to cope with the anxieties and stresses about the chaotic world around them, kids often obsess and ritualize their behaviors to comfort themselves. While some kids may spend their time intensely studying one area, others may be compulsive about cleaning, lining up items or even doing things which put them or others in danger. Not adhering to these rituals can be traumatic and often impossible for them. Professor Attwood explained how most of these rituals start...

There is a book called The Curious Incident of the Dog in The Nighttime. The main character is a 15 year old boy with Aspergers. This is an excerpt from the book..

3 red cars in a row mean that it is going to be a Quite Good Day. 4 red cars mean that it is going to be a Good Day. 5 red cars mean that it is going to be a Super Good Day. And 4 yellow cars in a row mean that it is going to be a Black Day, which is a day when I don't speak to anyone and don't eat my lunch and Take No Risks, because yellow is the colour of custard and double yellow lines and Yellow Fever which is a deadly disease.

Now you can see why he hates yellow so much but why are red cars good? People with ASD crave control, they like to know whats coming and HATE unpredictability. Maybe one day the boy had a really good day at school. What made this day so good? He was unable to attribute it to anything abstract and may have remembered seeing five red cars that morning. BOOM! Five red cars means a really good day. 

Of course this makes absolutely no sense to the rest of us but perfect sense to the boy with Aspergers. 

Character Obsessions

One of the Mums asked about her sons obsession with Super Heroes and in particular taking on their persona. This was becoming a problem as he was demanding to dress in character most of the time. Melting Down if denied access to his costumes and even refusing to attend his Early Intervention class until he was dressed in one of their costumes

I have a similar issue with my 6 year old. His obsession was Police clothes for almost three years and is now Army clothes.

Professor Attwood explained it like this. Super Heroes are cool. They have good values they are respected and no one ever makes fun of them. ( I guess this goes for police men and Soldiers too)Why wouldn't you want to be one. For some of our kids being THEMSELVES is simply too hard So they use these persona's to quell their anxiety about being accepted. It can be a good thing and a way to help them socialise but when it becomes an obsession and totally controls them and you, it's time to intervene. 

Aspergers and Girls

This was one of my questions and is of particular interest to me at the moment.  I have two boys with Aspergers Syndrome and one without. I also have aa almost  four year old daughter who is an absolute delight. I had a few concerns early on when she first started moving around, she liked to line up DVDs and her dolls. This of course freaked me out. It stopped and I relaxed. 

In January this year she started preschool. From January to September she did not speak a word to ANYONE at school. The only time she spoke was when I was present and only to me. She also displayed this behaviour in her early years when being cared for briefly in the Early Intervention Daycare room, while I attended workshops etc. At that time we put it down to age and shyness. There are also certain family members and friends she does not speak to. 

I have been very concerned about this and after explaining all this to Professor Attwood asked How likely is it that Darcy also has Aspergers?

He explained that girls are extremely difficult to diagnose and present very differently to Aspie boys. Girls are fabulous fakers. They watch and learn. They practice what they have learnt,ie with their dolls, and they mimic. They have fabulous imaginations and often live in a land of make believe. When they play with toys they are often acting out what they have learnt. They know they are different but will do everything they can to not let any one see it. They are usually compliant in early childhood settings, not wanting to draw attention to themselves. They are often intelligent and excel at school but friendships are hard. they usually have one very good friend. 

Selective or Elective Mutism is a very common trait in young Aspie girls as it is a way to deal with their extreme anxiety. They will not say I don't want to go to school, They will say they are ok because they think that is what they are supposed to say.

As to my question of how worried I should be? Apart from holding my breath during the above description, the chances are dependant on other things.. She has two older brothers who have Aspergers, this means she has a higher likelihood of also having it. That decreases a little bit because she is a girl.If she was a boy it would be virtually a given she would be Aspie. Because I am an older Mum (36 when she was born) it is more likely she will be. Because my Husband was also older it is even more likely...Not looking good. 

Professor Attwood then told me that a diagnosis may not be possible as it may not even be apparent she has Aspergers until late Primary School, Early High school. This is danger time for Aspie girls. Socialising becomes more difficult and they can have breakdowns unable to keep their facade going any longer. You then have all the lovely problems of puberty and predatory males to deal with.

His advice, get her assessed. Start addressing the Anxiety and watch very closely.

I will now be scouring Amazon for a copy of Professor Attwoods book on Aspergers and Girls.

I also asked a question about medication and in particular the medication my son takes but that is another story and as I know a few people struggling with this topic at the moment will devote a blog post solely to mine and my sons experience and Professor Attwoods advice.

I hope some of what I have shared is helpful. I think most of what I have covered and more is in Professor Attwoods book The Complete Guide to Aspergers Syndrome. I have his first book which is brilliant and apparently this one is even better.

http://www.tonyattwood.com.au/index.php?option=com_content&view=article&id=64:the-complete-guide-to-aspergers-syndrome&catid=37:books-by-tony-attwood&Itemid=430

For all of you with a child on the Spectrum I wish you luck on your individual journeys and leave you with my favourite Tony Attwood quote:

“The trouble is, people will say

 ‘people who suffer

from Aspergers’. No, you don’t suffer from

 Aspergers, you suffer from other people!”

 Tony Attwood

Confessions of an Information Junkie

My name is Teriann and I am an addict...My drug of choice? Knowledge.
I remember clearly the day my son Pierce was diagnosed. I had a lot of reports from various professionals and a really detailed letter from his pre school listing his often unusual and challenging behaviour to take with me to the Paediatrician. The Paediatrician told me he could have diagnosed him from the letter and asked if I knew what the list of behaviours were connected to. I had noticed that a paragraph in the letter was to do with eye contact (lack of) and not greeting people. I told him I had noticed this and that I thought those things were to do with Austism. I then stated "but he doesn't have Austism."
His answer... "doesn't he?"
I then explained that he couldn't have as he could talk. You see that was the extent of my knowledge of Autism. They didn't look people in the eye and they could not talk. The Dr then went on a very detailed explanation talking about Spectrum's and Umbrellas and Traits and something called the DSMV IV???  He then proceeded to tell me that he thought it very likely my son fitted nicely under this "Umbrella" and diagnosed him with Autism.
I of course wanted to know what HE could do to "fix" him.  He told me nothing but I could help make Pierces life easier and the best thing to do was to go home start googling ,start reading and start learning.
So I did and almost four years later I haven't stopped. I am preoccupied with all things to do with Autism and in particular Aspergers syndrome, which I now have two children diagnosed with. My Husband tells me I am obsessed and he is right but as any parent of a child on the spectrum knows...you have to be.
On my quest for knowledge I discovered workshops and seminars. These are fabulous events where I can submerge myself in the world of Autism for hours and sometimes even days. My favourite part of these events?
The resource table.The resource table is where you find the marvellous invention, the fact sheet. I LOVE fact sheets and I have an entire 5 shelf cupboard full of them to prove it! My addiction has become so bad I am in fact banned from bringing any more paper into the house. Thankfully a lot of these events are now emailing fact sheets and will even put you on a mailing list so the gathering of information never ends...
 SHHH don't tell my Husband!

Changing Lives

I promised in my last Blog Post,exactly one month ago, (remember, I am the Worlds Worst Blogger) that I would explain what I had been so busy doing that I had neglected my Blog so badly...
The story actually begins early this year when I was at yet another ASD workshop. I mentioned my boys, like alot of people on the Austism Spectrum, had a love of technology and in particular their iPod touches they had been given for Xmas. I also said I was interested in the educational apps and also how the boys would respond to an iPad. One of the Mums said she had found a website dedicated to iPads, Apps and Special needs kids. I wrote down the sites name on a piece of paper, put it in my bag and never saw it again.
Luckily, we had a wonderful group facilitator who hunted this lovely woman down and found the information I needed. So began my love affair with A4cwsn ( Apps for Children with Special Needs) http://www.a4cwsn.com/
A4cwsn is not just a website...it is a community with a Facebook page https://www.facebook.com/a4cwsn with almost 7000 members. Members who, like me, have Special Needs Children. On this page I met the most amazing bunch of people . People who's personal stories would break your heart in two or make it burst with pride at the achievements of their children. People who probably don't have a second to spare between all the appointments with Therapists and Drs their children need to see, but who make the time for each other.
Like all great communities A4cwsn has it's leader. Gary James is,as he is fond of telling everyone, "just a Dad".A Dad of six children, two of whom have Special Needs and who inspired him to create A4cwsn.
Have a look at this video and see some of the unbelievably awesome things he has done and is going to do...

Untitled from www.A4CWSN.com on Vimeo.
So, this is all very moving but I guess it doesn't explain what I have been doing...Well, A4cwsn is now in Australia. Yes we have our very own Facebook page https://www.facebook.com/A4cwsn.Australia ,(we are also in Canada https://www.facebook.com/A4cwsn.Canada AND Europe https://www.facebook.com/A4cwsn.Europe ) and along with some other wonderful Mums who I am now very proud to call  friends, actually we are almost family, I am helping to Admin this wonderful page. We started only 8 weeks ago and already have almost 1000 members. We have had our very first app party giving away 100s of apps, iPad cases and accessories. AND we have given away two iPads! We have a great group of supporters and can't wait to start our iPad campaign.
Now is when I ask for your help. To help raise funds for the iPad campaign we have entered a contest to win $5000.00. That would be 10 iPads for 10 Special Needs Kids-10 lives changed. AND all you need to do is vote. AND when you vote you can enter a draw to win an iPad that we will give away IF we win.
Click on this link http://sunsuperdreams.com.au/dream/view/ipads-for-special-kids vote for Kylies dream and then when you get your verification email and confirm your vote send it to us at A4cwsnausnz@gmail.com and we will add you to the draw IF we win.



So, my house is a mess, my Blog is neglected and I dream of iPads and Apps and Developers at night but it is all worth it...I am helping to change lives! Can you help too?

WE ATE IN A RESTAURANT...

I am the Worlds Worst Blogger. It has been 14 days since my last blog...
But I have good reasons.
#1 I have four children and a Husband. That's self explanatory.
#2 I have recently started an ASD support group AND am helping admin a Facebook page A4cwsn-Australia https://www.facebook.com/A4cwsn.Australia but more on that later.
#3 In the last week I have survived my sons 8th Birthday Party with 30+ kids and our first family holiday.
#3 is the topic of this belated Blog Post...

So Ryan is now 8! We had the best Birthday party ever.I have decided all Birthday parties will be outside from now on...

Ryan and his friend Andy

 Pierce

 Shaun

Princess Darcy

The lolly throw

The cake

There are no photos of Ryan blowing out the candles...because he didn't. He actually sat in the car while his friends sang Happy Birthday. That was ok, they know him and love him and not one of them even commented on the fact that he did not want to be there. Cool friends :-)

Less then 24 hours later we were off to Seaworld Resort for our very first family holiday. It may have been only 3 nights but it was so good! The boys were amazing. We didn't worry about school or appointments or anything. I let the kids do their thing. We walked and walked, we swam, we ate in a Restaurant ( 3 breakfasts, 2 dinners) NO DRIVE THRU. 

I have been told alot during this journey with Aspergers to be patient and have listened to advice like "baby steps". Sometimes I wanted to punch the people who said these things...but now almost 4 years later I have seen how those baby steps can become one giant leap...WE ATE IN A RESTAURANT!

Yes these 4 days were a big deal and just what we all needed. There were rules though...

I did what the boys wanted to do... Holidays are not times to teach or push them to do what we want them to do. I went where they wanted, let them eat what they wanted and even slept when they wanted and it worked. 

Ryan lining things up...on a rope :-)

Sadly all great things must come to an end but we have some great memories and I have promised we will do it again next year.

Oh, and just in case you missed it... WE ATE IN A RESTAURANT!

The Return of Vomitron...

Some people think that because you have children with special needs you automatically become a Super-Mum. Although I would love this to be true, I have to admit, like all Mums I make mistakes- alot of them. And like all Mums I suffer from that terrible disease "Mothers Guilt". Am I doing enough, am I doing it properly, surely someone or anyone else would do it better?

There are some ocassions when I embrace my  Superhero status and last night was one of them...
I think you all know my 6 year old Pierce has Aspergers? Now Pierce is a "text book" Aspie. Repetitive movements, obsessive behaviours, "little professor" speech (complete with an American accent), an impressive IQ and severe sensory dysfunction. Check,check,check,check,check.

Sensory dysfunction is a major issue with our ASD kids but one that is hard for us to understand. Pierces sensory system is classed as "hyper". In simple terms he is in overload ALL of the time. He hears too much, sees too much and feels too much. One of the many, many issues that arise because of this  is Pierces reaction to pain and illness.

I will explain it as I understand it...because Pierces senses are in overload when he is feeling "normal", when something like an injury or illness occurs it is MAJOR and yes the capitals are warranted.  I have seen Pierce go into shock over a stubbed toe. He also has a severe aversion to blood and other bodily fluids.His reaction to pain and illness is so severe it is a topic in his IEP at school. To the extent that all of the staff at his school have been made aware of Pierce and what can occur if  injury or illness occur ie: he will withdraw and/or abscond. He will hit out if approached, not because he is violent but because adding any extra sensory input is something he is not able to cope with, So, don't touch him, don't talk to him...just be there and wait it out!

Thankfully Pierce doesn't get sick or hurt himself much but when he does it's not pretty! Last night was one of those nights...I had a visit from his alter ego Vomitron!

Now, I'm not sure if Vomitron is an Autobot or a Decepticon but I do know he causes absolute devestation!
Pierce has a stomach bug and woke up at 2am vomiting. Now vomiting and children is always messy but when Pierce is sick he goes into this trance like state of withdrawl. He sees nothing he hears nothing...and he vomits! He is a vomiting robot, hence Vomitron, complete with robot like movements reminiscent of the robot in Lost In Space with projectile vomiting added!

How does Super-Mum deal with this? I follow him around with towels and bowls encouraging him to " Get it out sweetheart you'll feel better" and begging him to stay in one spot. Like all Mums I know how far vomit can travel! Vomitron doesn't care, he continues on his path of destruction.

Eventually and against all my Motherly instincts I leave him to it. It's heartbreaking to see your child sick or in pain and not be able to comfort him and I still have alot of trouble leaving Pierce alone when this happens. It just feels wrong .

So, I have cleaned. I have scrubbed. I have disinfected. I have defeated Vomitron. And all those cuddles I couldn't give Pierce last night...he got this morning.

All About Ryan

About 12 months ago my eldest "Aspie", Ryan, started to become very aware that he was different to most of his peers. This was having a negative effect as he assumed the problems he was having at school both in the classroom and in the playground were because he was "stupid". Not matter how much I assured him this was not the case he was confused and angry and his already low self esteem was taking a beating. Thankfully at the time I had both boys enrolled in ASPECTS (Autism Spectrum Australia) Building Blocks program and had one of their teachers, Sylvia, available to ask advice.

Sylvia had been working with us for almost 6 months at this time and had quickly become my BFF! She was amazing. Within a month of our first meeting our house was totally set up with Visual Schedules, Calendars, Emotion and Noise- Thermometers and they were working. For the first time ever I felt like I had a way of helping my children cope with their anxiety.

Sylvia decided that it was time for us to tell Ryan he had Autism. I was terrified this would make him feel even worse about himself but she assured me that if it was done properly it would give him the answers he was looking for.

We spent our next two appointments discussing Ryan and his interests as well as his strengths and weaknesses.

She then made both an electronic and hardcopy of Ryans very own "All About Me" book

.

Then we all sat down for a chat. Ryan, Sylvia, Pete(my Husband) and I. We gave him his book and went through it in great detail. We then let him ask any questions he had about Autism. He had a few...How did I get it? Can I die from Autism? Does anyone else have it? Will I always have it?
We tried to answer his questions as positively as possible. Then the best part. Ryan got to finish his electronic book by choosing colours and pictures and also adding people who could help him.

I have to say this was one of the hardest things I have ever had to do and it took a huge effort to not let Ryan see how emotional I was. I don't know if was fear of his reaction or that it made it just a bit more real, more permanent?

Telling Ryan about his diagnosis turned out to be the best thing. He already knew he was different and once he found out what was making him that way,and that there were other people just like him, he started to accept himself a little bit more.

He even got up in front of his class with his All About Me book we had laminated for him and had his teacher read it to his classmates. This was his idea. Ryan asked me if he could tell people and I told him it was his decision who he wanted to tell. He said he wanted everyone to know because no one understood him. Ryans teacher still talks about that day and I  had many parents come up to me to say their child came home and told them about it and how wonderful they thought Ryan was and also that it helped their child become more excepting of Ryans unusual and often distracting behaviours.In fact instead of laughing at Ryan and talking about what he's doing his classmates have taken it upon themselves to help Ryan stay regulated. They do lovely things like rub his back or get his weighted lab bag for him when they see him getting "jiggly".  Their response to Ryans diagnosis has given me hope for the future and encouraged me to be open and honest about my boys with everyone.

So Ryan carried his All About Me book with him EVERYWHERE for about 2 months, and very proudly told anyone who would listen "Do you know I have Autism?" Turns out this is an excellent conversation starter, great for a child who has immense trouble initiating conversation.
Ryan still sometimes says he's stupid and struggles with his self esteem, he probably always will but I hope we've helped him understand himself a little bit more and we will continue to work on teaching him the skills he needs to make his way in this world. I only wish I could follow him always and tell everyone he meets what an amazing and special person he is and how lucky they are to know him.

The Very Bad Day

 I went out last night. I gave myself a night off and spent it helping my Mum celebrate her Birthday. Seemed like a great idea at the time, but now? Not so much.

Aspies don't like changes to their routine and me not being home with them is a big change. Heck I am their routine! So today I am facing the consequences of my actions..

We've had meltdowns. Alot of meltdowns. Now, my meltdown warning system has been on high alert for a couple of years now...I can usually spot one coming and diffuse it's power with one of my many meltdown busting tools. But not today. 

I made this

So Ryan could do this

 But then this happened

So the thing I did to avoid a meltdown actually ended up causing one.

Then I cut Pierces toast into triangles when I know he only eats it cut in squares and forgot to turn the power point on when I plugged Ryans iPod into charge and a heap of other things that shouldn't really matter but on a day like today were massive, huge, big deal type things.

I have surrendered. I have given Ryan string, sticky tape and chocolate. Pierce has unlimited screen time.

I have survived, weary but wiser. Some times "time off"... isn't!

 

Party Pooper!

My 6 year old Pierce is a Party Pooper. He HATES parties...and theme parks and swimming pools and school excursions. In fact anything that  most kids love, Pierce hates!
I was reminded of Pierces loathing while discussing Ryan's upcoming  8th Birthday party on the way to school this morning.(these details I will save for another time because I have a feeling Ryans Birthday is going to be totally deserving it's very own Blog)
The instant the words Birthday-Party left my lips I was greeted with the familiar sound of Pierce in Grouch mode..."Great, another party! I'M NOT COMING!!
Now I am quite ok that two of my children have Aspergers, but I have been known to completely ignore this fact. One such occasion was Pierces 6th birthday.
In my defence I will  add that it was Pierces first year at school and it had been a HUGE effort getting him ready for this transition, two and a half years to be precise,but we did it, and I was still feeling a little smug.
So, I decided Pierce would be having his VERY first Birthday Party, that we would invite A LOT of children and that he WOULD HAVE FUN.
Pierce did agree to the party and even decided on the venue- Hungry Jacks,because" that's where you have your party when you're in Kindergarten" (His two big brothers had theirs there so it must be so).
Next came the guest list, our first hiccup.
Me-"who do you want at your party Pierce?"
Pierce- "No one."
Me-"You must want someone?"
Pierce-"ok you can invite Shaun."
I decided to compromise and only invited 27 of his new class mates.
How did it go?
BAD!
Pierce was in one of his full blown Aspergic (not a word but it should be) moods...
There were meltdowns , rude comments about presents that weren't to his liking and why would anyone buy me THAT? Fixating on presents that he did like(Lego men), very little socialising (he spent an hour of the party  inside sitting at a table with my dad ignoring everyone), more meltdowns because he was hungry and the party plan involved games BEFORE food (Pierce hates party games too) and lastly an unfortunate incident involving ice-cream cake, Pierce hiding under the table with hands over ears while everyone sang happy Birthday and my 7 year old Aspie Ryan, having a sudden sugar rush from the soft drink I didn't know he had been drinking, leaping on to the table and grabbing at his crotch while wildly pelvic thrusting like a rock star in the middle of a sell out performance!
Yes we Morgans sure know how to party...
Will we do it all again next year?Probably not, though when I asked Pierce if he thought he would like another Birthday party he said...
"Yes, but no ones coming!"

The Rules According To...

So I'm bloggging ....finally, at last and about time! The most interesting thing about this so far is that my computers spell check does not recognise blogging  but instead gives me options such as - bogging, logging, boggling and slogging...
 Aspergers rules???  took along time to decide on a name and this one appeared almost like a vision...or maybe  it is just the day I've had?
Two of my four children have Aspergers. I am sure you will get to know them all as we go but anyone who knows anyone with Aspergers knows there are ALOT of rules!? Theirs and mine...
Todays rules are -
NEVER EVER go grocery shopping with more then one child and especially never with more then one Aspie. This is a recipe for disaster. Also do not think that by listing non acceptable Aspie behaviours before you go shopping means they will not  indulge in said behaviours...ie-" noone is allowed to slide down the aisles because it feels nice OR tell me I am a liar because I said grocery shopping wouldn't take long and it did"
Don't take Aspies to a friends house they have never been to with lots of people they don't know and expect them to act "normal"...They can't and they won't!
And my favourite rule and the one I live by- Do love your Aspies unconditionally and appreciate them for their honesty, intelligence and ability to keep you true to your word and most importantly(in my home anyway) on time.
 Aspies Rule OK?