Day 26. Autism Awareness month continues …

Day 26.  Autism Awareness month continues ...

Day 26. Autism Month continues …

Today I wanted to share the amazing story of Carly Fleishmann. Carly is a twin and at the age of two she was diagnosed with severe autism.

From Carly ….
My name is Carly Fleischmann and as long as I can remember I’ve been diagnosed with autism.
I am not able to talk out of my mouth, however I have found another way to communicate by spelling on my computer. (and yes that is me typing on the computer by myself)

I used to think I was the only kid with autism who communicates by spelling but last year I met a group of kids that communicate the same way. In fact some are even faster at typing then I am.

A few years ago a story about my life was shown on ABC news, CNN and CTV here in Canada.
After my story was played I kept on getting lots of emails from moms, dads, kids and people from different countries asking me all sorts of questions about autism.

I think people get a lot of their information from so-called experts but I think what happens is that experts can’t give an explanation to certain questions. How can you explain something you have not lived or if you don’t know what it’s like to have it? If a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth. http://carlysvoice.com/home/aboutcarly/

Isn’t she amazing and inspiring? For some years now I have kept up to date with what Carly is doing by reading her twitter posts and watching her Facebook page. I’ve put her website address and facebook page address below if you’re interested in learning more.

Watch this clip to learn more about Carly’s story. http://www.youtube.com/watch?v=34xoYwLNpvw
If you watch the link on “Carly’s Cafe” below you can experience life from Carly’s perspective as she visits a coffee shop with her Dad and sister. See and hear what she experiences in this environment. It will teach you an awful lot about how life is for individuals on the Autistic spectrum.
http://www.carlyscafe.com/

Carly can teach us all more in a few short moments than experts have been trying to learn about this condition for many, many years. She is so generous with her time and her knowledge. Carly gives hope to so many people who have children with Autism who are non-verbal or who themselves cannot speak. She is simply remarkable. I hope you’ve enjoyed learning about this very remarkable young lady. Please share this story with your friends.

http://carlysvoice.com/home/

https://www.facebook.com/#!/carlysvoice?fref=ts

Day 25. The journey continues …

Day 25.  Autism Awareness month continues …

 

James, like many other children on the Autistic Spectrum, has huge issues with organisation skills.  This week we bought his fourth school hat!  I have no idea where there vaporise to but much like a boomerang … all these hats seem to eventually find their way back to us.  So this time last week Thomas had lost his hat and James had lost his hat.  Tom’s showed up and we bought James another hat (we had to because he cannot cope with being in the wrong uniform!!) and now James’ hat has turned up! So now we have a plethora of school hats which is fortunate … as I suspect at least one of the hats we have will disappear at some point or other.

 

James finds it difficult to process lots of verbal instructions at once.  If you have a child with ASD or if you’re teaching a child with ASD, when talking use short, direct sentences giving instructions.  Use checklists with visual supports as these are really helpful.  If the class is completing a task, break the task down into small steps, just like a checklist.  This will help the ASD child to process the task more effectively and also gives them a scaffold so there are better able to complete the task.  Modeling this process is useful and might help the child to learn to checklist for themselves as they increase in independence.

 

When we were visiting possible schools for James for Prep, James was able to hear a fridge humming several classrooms down from the Prep room we were visiting.  He is really sensitive to noises, smells and movement that others may not even notice or detect.  Fluorescent lights and interactive whiteboards have been causing issues for many of the kids I’ve been visiting in the schools.  One little boy had been inadvertently placed under a fluoro light.  I observed him in the classroom shielding his eyes from the light for the whole lesson.  This of course impacted on his ability to learn, his posture and his general well being.  Another child had a classroom near the tuckshop and was really upset by the smells from the tuckshop.  Whiteboards can be an issue too if children are placed too close to them. some children are super sensitive to light and they will even detect the flicker rate in screens and whiteboards. It can give the children headaches, distort their vision, scramble their thoughts and make them feel quite unwell. The children I’ve observed were not able to verbalise the discomfort they were experiencing.  In one case the discomfort resulted in poor behaviour and in the other is resulted in the child constantly complaining of feeling sick.  You really have to look for the trigger with these children.  The presenting problem is very rarely the actual problem.

 

Our classrooms these days are not really ASD friendly places.  These days there are posters and word lists over every surface; there are things hanging from the roof; there is art work displayed everywhere – it is very visually overstimulating.  Add to this the fact that most schools now seat the children in desk clusters.  Often the desks don’t directly face the board and often the children share materials such as pencils and other materials.  This really increases the amount of social demands on ASD kids.  Think back to our parents schooling experience.  All the desks were separated in rows facing the board and there was one classroom accessory – a clock! Classrooms were quiet, focused places of learning where you learnt independently.  It occurs to me that these classrooms were far more ASD friendly than our modern classrooms.

 

A number of our schools have just replaced their bells with an automatic ringing system.  They ring very loudly and have a very abrasive tone.  One of the little boys I live with has been really suffering with the new bells at his school.  The school have kindly disengaged the ringer outside his classroom but this little boy’s reaction to the bell is still enormous.  His brain kicks straight into fight/flight when the bell rings and he either runs away or hides.  He cannot control this response. 

 

Teachers these days have a really tough job.  There are many children with a myriad of issues within their classroom, and there are such a diverse range of needs to be met.  What I always say is though – don’t change one thing for one child – change your whole practice for the benefit of every child in the class.  Any change you make for an ASD child (checklists, visual supports, simplifying instructions) will benefit all the children.  Self regulation visuals, physical activity breaks, quiet corners, behaviour systems – all these things will benefit every child in your classroom.  An ASD friendly classroom is a good classroom for learning for all children.

Day 24. The journey continues …

Day 24.  The journey continues …

We have now reduced James’ medication to a point where our next step is to be off all medication.  That step will occur from tomorrow.  It’s been a really interesting process to watch.  When James is good he’s fantastic!  When he isn’t he is appalling and often very anxious and teary …. but I must say it’s been nice to see my funloving, giggling, flappy little man re-emerge from the haze he was in.

When he was on this particular medication his flapping almost completely disappeared.  Now as you’d know I adore his flapping.  He flaps the  back of his hair when he’s really happy and/or excited.  I call it ‘unbridled joy’! It’s just beautiful.  I don’t want him to stop flapping – he’s my happy, flappy boy.  He played a trick on me this afternoon and then nearly laughed and flapped his way out into the ether!  I nearly cried, I was so happy to see it!

James really lost his sense of fun on this medication.  He has always been a giggling Gertie.  He’s got a great sense of humour and loves a good joke.  He’s really lost that since he started this last medication.  As he’s been coming off it we’ve seen that little funny person re-emerge.  I have had the joy of listening to him bust himself laughing.  He was in such hysterics laughing at Tom’s antics yesterday morning  that he could barely stand.  Despite the fact that we were late for school, I just enjoyed listening to them both chortling together at their own funniness.

From a young age, James found it quite difficult to wind himself down to sleep.  Many children with ASD struggle with sleep.  Some research indicates that children with Autism tend to have issues with their circadian rhythms.  Issues with melatonin regulation (hormone that regulates the sleep/wake cycle) and anxiety also impact on the child’s ability to sleep well.  Children with Autism are also more likely to suffer from other conditions that may impact upon sleep such as gastro-oesaphagal reflux, sleep apnoea,  night terrors,  and seizure disorders such as epilepsy.  James has taken melatonin to help to sleep since he was about 3.  Since starting this new medication, he has taken melatonin less often.  For him though, I think the melatonin is more effective in helping him off to sleep than his current medication.  The current medication may improve his overall quality of sleep though which is what we may have to experiment with in a week or so.

Over the past few months James’ eye contact has really deteriorated.  His ability to demonstrate affection has also decreased.  He has gained nearly 5 kilograms of weight.  His levels of agitation and anxiety have increased.  The new medication has helped with hyperactivity a lot and it has definitely improved his sleep quality at night but other than that, I can’t see a lot of positives for using this medication.  I thought long and hard about what we should do because we have been on a 5 year merrygoround with medication.  I think it really is time to just wean James off all medication and see what happens.  It’s been a while since we’ve really seen his baseline behaviour and I think it’s important that we see this before starting yet another medication.

I have been picking him up early from school whilst I’m on leave – 12:30pm each day.  This morning started badly with crying and anxiety due to not wanting to go to school.  He was saying, “It’s not peaceful there.  I just want some peace.  It’s noisy and I just get so tired!”  When I dropped him to school I deliberately arrived after the bell (I often do!) so things would be quiet.  By the time he got to the classroom he just flipped a switch and happily went in and chatted with his friends.  So I guess it was no suprise after our moring that today I got a phone call from the school at 11am to say that James was distressed because he didn’t want to go into the hall for the Anzac Day Liturgy at school.  That bloody hall … seriously! That hall is the most reliable measure of James’ anxiety.  If he’ll go inside it – he’s good – if he can’t go in – he’s not OK!  He was reasonably happy when I picked him up at 11am.  This afternoon he’s really exhausted but again, quite settled and happy.  I’m pleased we have the Anzac Day holiday tomorrow and we may even just consider keeping him home on Friday as his last medication drop is tomorrow.  Eek! Medication free for the first time in years!!!

So what are we going to with this little man?  For now,  I’m feeling like perhaps we might even entertain leaving him off medication in the short term.  He is certainly having some issues with attention and anxiety … but I also think he’s old enough now for us to try applying  some interventions to help.  Certainly if it gets unmanageable, we will need to medicate but I’d at least like to give him an opportunity to try and regulate himself.  We shall see. 

Dad has been helping me research into neurobiofeedback.  This technique involves the use of real time EEG in order to illustrate brain activity.  My understanding is that essentially a simple light, or game, or tone is used to indicate when certain brain activity is detected and over time this can help the client to gain control their central nervous system activity and responses.  It aims to change timing and activation patterns in the brain. It creates changes in feedback loops and pathways that make up the brain. This improves brain regulation, which impacts a variety of symptoms. This treatment has been used extensively for ADHD but more recently it’s being used in treating individuals with Autism.  I will certainly investigate this further.  Anyone had good results using this process?

Well … for now, I’m delighting in having back my affectionate, funny, happy flappy little character.  I just adore him and I adore the way he is – his personality, his eccentricities.  I don’t think I’ll ever be comfortable with a medication that changes the essence of who he is because who he is …. in essence … is awesome!!!

Day 23. Autism awareness month continues …,

Day 23.  The journey continues ….

 

Today’s post is a shout out to all the amazing ASD families that I work and play with.  These are a truly inspiring and wonderful group of people.

 

Amongst the people I know there are a number of parents who homeschool because their children’s well being and ability to thrive necessitates it.  These families make great personal sacrifices in order to provide their children with an education which meets their needs.  Many of our children struggle to attend school full time so a huge number of these families manage early pick ups in order to meet their child’s needs.  Schooling can be very difficult for children with ASD and there are so many considerations to be made.  Hats off to these amazing families who make these often very difficult choices and make huge personal sacrifices to care for their children.

 

Myself and a group of gorgeous girls run a local support group for families with children with differences.  This group is called MyTime.  We have regular plays in the park, parent information sessions, social opportunities and educational seminars.  MyTime is a governmentally funded program to support families with children with differences.  We now have over 70 families on the books which is an astounding achievement.  There are 32 MyTime groups in Queensland and the majority of these have a membership of 8-12!  It goes to show what a huge need there is locally for groups to support these families.  We have a Facebook group if anyone is interested in finding out more – MyTime Toowoomba.  As I’ve mentioned before, I also run a Facebook group named “Toowoomba Autism Noticeboard”.  We have nearly 300 members.  It’s a great support for families with children in our area with ASD. 

 

I am always blown away by how educated our parents are about their children’s condition.  These families read the latest research, books and ensure they are aware of all the latest treatment directions for Autism.  I have attended many seminars with parents from our group and am always so impressed by their level of knowledge and understanding of Autism.  I also appreciate that our parents are so willing to share their knowledge and experiences with one another.  It makes a big difference to have people who are a little further down the track than you providing you with some direction and support.

 

I want to thank each and every one of these families for the incredible support, love and comradeship that they have extended to me and my family, and to one another.  We are so blessed to be sharing this road with some truly beautiful, quality people and their magnificent children.

Day 22. The journey continues …

Day 22. The journey continues ….

Have you ever heard the saying, “If you know one person with Autism, you know one person with Autism”? It is very appropriate! I have interacted with and worked with hundreds of kids on the Autistic spectrum and no two of them look alike. Each child has a completely unique profile of needs and of course, their own unique personalities.

I believe in the neuroplasticity of the brain. I believe that we can retrain the brain and encourage other pathways. When James was a small child he had to be explicitly taught many things – hugging was one of them. It didn’t come naturally to him but he learnt through repetitious and gentle modelling. And now I believe he enjoys a hug almost as much as the person who’s receiving the hug from him. It’s not that he lacks affection, he just needed to be taught the process.

Not all people with Autism present like “Rain Man” or Dr House or even Sheldon from the Big Bang Theory (and don’t we all love him!) Each person on the spectrum is unique. Some children prefer their own company. These are the kids who sit by themselves at lunchtime and absorb themselves in a fantastic novel. Some children really enjoy social interactions but may just be a bit unsure how to negotiate the process. Some children might struggle to show emotion but that doesn’t mean they don’t feel emotion – they just haven’t learnt how to express it appropriately.

Have you ever heard that children with Autism lack empathy? I actually think that some children with ASD are super empathetic – they feel things very strongly – sadness in others, anger in others etc. Some children need to be taught empathy. James hates it when other people cry, especially little children. If his younger cousins hurt themselves, he will pick them up, cuddle them and deposit them to the nearest adult for help.

I’ve attached a video again today. This video is of James and Thomas waking up their cousin, Cormac from a sleep. In Tom’s Kindy year, my youngest sister Joanna (whom the boys call JoJo) looked after Tom one day a week. Tom adored this time with JoJo and Cormac. This video shows James’ ability to care for a younger child – to show affection and empathy, and it shows Tom’s ability to be the comedy relief when some distraction was required. I love this video! Thanks JoJo for allowing me to share it xxx

Day 21. The journey continues …

Day 21.  The journey continues …

Since I began the autism journey some five years ago, I have learnt one very valuable lesson.  I am the expert on my child – not the teachers, not the Paediatricians, not the Psychiatrists, not the OT’s or Speechies or Dietiticians …. me!  I am the expert on my child.

 I am the one who lives with this child 24 hours a day, 7 days a week, 365 days of every year!  I understand the subtleties of his condition.  I know what makes him happy.  I know when he’s behaving unusually.  I know when a medication suits him or not.  I know his capabilities and his limitations.  I know when to push and when not to push.  I’m not saying I have all the answers … I don’t!  But I do know that I am the most qualified person on earth when it comes to knowing and understanding my child.

 I have visited so many medical specialists since having James.  Not one single one of them had a child with Autism.  They have never lived with someone with Autism.  They therefore do not have a full understanding and appreciation of the stresses of ourlife and the needs of my child.  I know I’m not being entirely fair.  Compassion does go an awfully long way when you’re caring for a family with a child with a disability.  It really does.  It’s just that I get frustrated by being given direction or advice which simply isn’t realistic or achievable for the most part, because the person just doesn’t understand or appreciate what our life is like. 

At the end of the day as parents we are really on our own.  Although as a family we do have fantastic specialists involved with the boys –  they don’t live with us.  We see some of them once or twice a year, others perhaps once a month.  For the rest of the time we manage on our own.  A psychologist might make behavioural management suggestions for you but they don’t live with you whilst you implement them.  Often I am told to reduce stress and to keep things calm and to prioritise.  All true and that’s wonderful … but how?  The fact that they don’t actually tell me how confirms to me that they have absolutely no idea themselves.  I need people to stop talking to me like they are reciting something out of a text book or a self-help book, and I need them to give me actual practical hands on advice that is achievable in my environment!  Medical people do have a tendency to say you need to do more of this or that, but they seem to have no practical idea how to make that happen in our homes.  It’s not like they will be the ones finding PECS cards, and printing and laminating visuals now is it? Paediatricians and Psychiatrists might make suggestions about medication but then you’re on your own again until you return for your appointment.  And medication is a hugely overwhelming and stressful issue. 

Every time I visit a specialist for the first time I feel like I should explain that whilst this is my first visit to you, I’ve seen several other doctors before you, we’ve trialed several other medications before this one and I’m five years down the track.  I am no rookie and I am sceptical and reserved about your recommendations.  I have read a great deal and I will be asking a lot of questions of other specialists before I follow through with any recommendations.  I have learnt this through long, hard experience.  This is not meant to be about denigrating the specialist community at all.  I am not blaming anybody nor do I wish to underplay how much I value the medical support we have.  I am very grateful for the medical support we have – we have a great team.  I just wish sometimes I could plug them directly into my brain and experiences so they could ‘get it’!  I wish they could see things from my perspective! 

I administer a Facebook page called “Toowoomba Autism Noticeboard”.  It is a shared space where we can post information relating to ASD and ASD support services in Toowoomba.  Any information about workshops, support groups and products can be viewed and shared here.  It’s a great way to share and connect with others on a similar journey!  We are fortunate to have a number of Medical and Allied Health Professionals who regularly participate on the page.  This is very valuable and is very much appreciated by the families who participate on the page.  I am so grateful for their participation.  I have gained so much through my conversations with other parents on the page.  We are all on the same road together.  The parents are a font of knowledge and information.  When we talk, you know they truly ‘get it’!  It has been a wonderful resource for me and I hope for many others too.    is is so normalising and validating to be surrounded by other families on the same road as ours. 

I am grateful for the quality expertise of the medical and allied health professionals that form a part of our team of support for the boys.  They are each ‘experts’ in their field and I respect and admire each of them for their talents and experience.  I however am the ‘expert’ on my children.  We need to collaborate in order to ensure good outcomes for the kid – I bring my knowledge of my child and they bring their knowledge within their chosen fields.  I guess in the end it’s all about team work.  This issue is a tough one because it is actually very difficult to be truly helpful in this specific situation if you haven’t ‘walked a mile in my shoes’!  I wonder what other parents with ASD children think?

Day 20. Autism Awareness month continues …

April 20th.  Autism Awareness month continues …

 

The highs and lows of being a carer.  There are many mothers (and more than a few dads I might add!) who are currently at home full time and in the role of full time carer for their ASD  children, and sometimes also their partners.  It’s a really tough role.  Having one parent at home full time places such a strain on the family financially.  It is also a very demanding role physically and emotionally.

 

Most parents would relate to feeling like a servant, sacrificing your own needs for the needs of everyone else, getting minimal to no sleep, constantly refereeing arguments and other issues as they arise, rarely getting time to yourself for time out, or even the opportunity to connect with friends.  This is the life of a carer but the emotional demands the intensity are enormous and unrelenting, and life is far more restrictive.  It can be extremely isolating and rather dehumanising to constantly be caring for others, and having no room to meet your own needs.

 

Many people without children with disabilities don’t fully realise the extra demands placed upon the family.  I’ll use our family as an example – and please  be aware that we have a significantly easier circumstance than many other families!  I work a 25 hour week which essentially sees me at work from 9-2:30pm Monday to Wednesday, with two shorter days on Thursdays and Fridays.  I have grandparents who thankfully do school pick ups on Tuesday and Wednesday afternoons.  During the week, I have at least one appointment with each of the boys teachers; sometimes an appointment or more often an email to the school’s learning support teacher; and appointments with one of either medical professionals, speech or occupational therapists.  Each week I review the medication and ensure we have scripts ready and that we are stocked adequately with medications.  If there is a special event at school such as the cross country, I need to ensure that I start preparing the boys 5-7 days in advance so that their stress levels (and therefore mine!) remain low.  If there are free dress days or Pizza days at school we need to prepare for those too.  If there is a variation in the timetable at school, we need to prepare for that.  It requires a lot of mental and emotional energy to do all this and it often requires you physically fronting up to the school and having a conversation with someone about how you might manage a situation.  It is exhausting.

 

Coupled with this physical demand, there is the emotional demand.  Many carers of individuals often talk about living on adrenalin.  Individuals on the autistic spectrum can often be unpredictable.  You can’t always predict what might set a meltdown off; or when they might randomly just run away from you.  You constantly need to try one step ahead of them trying to avert disaster and anxiety; and then when meltdowns occur, long after they have moved on, you’re still feeling jaded and traumatised.  I refer to this heightened state as having  ‘my spider senses tingling’!!! My spider senses are always tingling with these kids. You never know what might set them off and even after the event, you then run diagnostics through your head about why that happened and how you might strategise for that in the future.  Your ‘senses’ are constantly on high alert.  The level of stress and adrenalin is high.  But I always say, that something has to eventually happen with all that adrenalin.  You have to find a way to make time for yourself and ensure that you get rid of that extra adrenalin – that your ‘spider senses’ have time to not tingle!!!

 

This week is my first week on leave and I am amazed by the change in my life.  Usually my day is an adrenalin fueled process of rushing to school, settling the boys (often a challenge!), rushing to work, putting in 100% whilst I’m there, and then immediately rushing back to collect kids (never knowing how I will find them!) and then getting home to washing, lunches, dinner etc.  This week, I’ve had more time to settle the boys of a morning which has really helped.  I’ve had time to do meal preparation and chores whilst the boys are at school.  I’m calm when I do the pick ups because I’ve had an actual mental break from stress, and everything kind of just happens.  I’ve had time to blog in an unhurried fashion, to chat to friends on the phone and even have a coffee with friends.  Even though I’ve been collecting James at 12-12:30pm and Tom at 2:30pm – life is still very much more relaxed and an awful lot more manageable.  I am taking deep breaths and allowing myself a few pleasures I’ve not had time to enjoy for a long time – like playing the piano!  I am realising that I have been totally exhausted and burnt out, and that I’m going to have to make some huge and informed changes before I return to work in a few weeks.

 

Many kind people have often asked how they can extend help to families with full time carers.  Like all things in life, it’s the little things that help.  Drop a meal over every now and again or offer to take a load of washing home for them.  Offer a listening ear or give them a break for the afternoon.  It’s the little things that make a huge difference.  It may seem like nothing … but be assured it’s something!!