Another Seizure..... surely there must be a link!

Another Seizure..... surely there must be a link!

I would really love to hear from anyone who has a child with Autism, and experiences Absent Seizures.  On Friday my youngest son has had what can only be described as another seizure. It didn't sound similar to that of last year, but the description I had from school, the pale skin, the stiffening of the body, the fixated trance, the 10 minute absence..... all points to that direction.  By the time I raced up to our school, he was slightly warm (temperature-wise) but nothing of a real concern. Again no real symptoms leading into this episode other than his overall behaviours.... (very obvious ASD traits showing) and he was on the computer. My Aide thought this could have set him off.... we really don't know.  

After bringing him home, I administered some Panadol and began the long night of watching and waiting. I alerted the support network around me in case of a late night call for help and just had to adopt the attitude of.... if it happens.... it happens.  Really what can you do in this situation ?

My motherly intuition is telling me and has always told me there is something going on here that needs further attention. I have always thought this...even after our EEG last year came back as normal.  The problem faced during these tests is that, your child needs to be sleep deprived.... which my son was. However he would not go to sleep.  I remember reading an article about Absent Seizures in Minds and Hearts last year.  It was published in the Autism Quarterly Magazine.  It was so interesting.  The article was about a child who was having seizures, but EEG's couldn't pick them up.  The only way to accurately do this if for the child to be asleep.  Then the sleeping patterns and brain activity can be detected.  I guess this information has always stayed in the back of my mind...especially when I see my son disappear into a trance.  Sometimes he can detect touch while other times he can't.  Some of these trances only last for around 10 secs.... while others are longer. His symptoms seem to be very inconsistent.  Knowing our tonsillectomy is only 7 weeks away.....I guess we are all just waiting to see if this will make any difference.  No tonsils will hopefully mean less infections....less temperatures etc. Our paediatrician has also order a complete blood analysis, so we can determine if his thyroid and iron levels are normal etc etc.  My looming concern now is, if this type seizure is happening regularly.... he could  have one while under the anaesthetic.  Then what?    Maybe I should be studying Neuroscience not Occupational Therapy!  Times like this I wish I knew what to do. I think the best course of action will be to go and see our paediatrician asap, and discuss what happened. He is such a caring doctor, with a supportive interest in my son.  I am sure he will put any reservations I have to rest. 

Still at times like this.... a little push towards what you know is the right way to go (listen to that motherly instinct), doesn't hurt when dealing with different specialists. Polite and respectful yet persuasive and firm, because sometimes a Mum just knows! 

Autistic kids put strain on schools

Autistic kids put strain on schools.

NEALE PRIOR and BETHANY HIATT, The West Australian April 28, 2011, 5:40 am

The WA State school system and education budget are being put under strain by a surge in students with autism and severe mental disorders.

Education Department figures show the number of students receiving extra help for autism under the Schools Plus program more than doubled to 2037 between the 2006 and 2010 academic years.

The number of students getting extra help because of severe mental disorders jumped from 64 to 410.

The department has attributed the rise in severe mental disorders, including the number of students rising by 87 alone last year, to broader social and mental health trends as well as increased awareness of mental issues.

It points to international trends in the growth of autism as well as parents and teachers being more aware of the condition as a possible explanation for what previously may have been seen as attention, behavioural or learning problems.

The confirmation of the higher rates comes as the Education Department's budget is being reviewed amid fears that it could suffer a repeat of last financial year's $67 million blowout.

That blowout was partially fuelled by the department's failure to achieve a 3 per cent efficiency dividend demanded by the Government and by a surge in staff numbers because of a rising number of education assistants, especially for special needs, and support staff.

Under-Treasurer Tim Marney last month told a Parliamentary estimates committee that staff numbers had been growing at 10 times the rate of student numbers.

The extent of the blowout and what action the Government will take will not be known until Treasurer Christian Porter releases the State Budget on May 19.

Education Minister Liz Constable said the pressure on the school system was not surprising, given the rise in students with special needs.

WA Primary Principals Association Stephen Breen said the big increase in the number of children with special needs was putting extra pressure on the Education Department's budget and on individual public school resources.

POINTS TO CONSIDER FROM MY POINT OF VIEW..........

• Western Australia has the largest number of Gold Mines In Australia:  Research has suggested the link between Autism and Heavy Metal Poisoning.
• I am not savvy to the Western Australian Special School Policy, but in Queensland the only way an Autistic child can attend is for the parents or carers to sign documentation stating their child has an intellectual disability.  Autism isn't an intellectual disability….It is a communication disability.
• Teaching in the Queensland Education System for almost 15 years, has exposed the underlying pressures placed on teachers to cater for children with extra needs. In Queensland, teachers do not received appropriate training and aide time to firstly benefit the children in question and secondly to provide quality of Education that every child in Australia has the right to.

LOOKS LIKE ANOTHER ADVOCACY ISSUE!

Parenting Autism is a Rollercoaster Ride!

Parenting Autism is a  Rollercoaster Ride!

I'm really not a fan of "Rollercoasters!"  The feeling of your stomach dropping, the speed, the bumps and squeaks and rattles. The loops and uncertainty. You want to get off but can't. You want it to stop but you cannot. The out-of-control feelings not knowing what is happening, where it is going or went it will finish. I guess it is the constant up and down sensation that feels the worst.  But for some unknown reason..... we line up again and again, just to have another ride. And why not?  Life is all about new experiences and even though we may not like the uncertainty, there is a "buzz" of excitement that we get on the ride. I have always said that parenting is very similar to riding a rollercoaster.....

Over the holidays I had a break through moment with my youngest. I was proud, relieved and over-whelmed. I did post the experience, "Don't Mess With the Quiet Kid!".  I bragged to all my friends and family about my "one step forward". I was on such a high.

However, we have all heard the saying... "one step forward and two steps back...."  That particular moment in time we had, was the excitement and fun of the "rollercoaster"... while this week, returning to school to start another new term, has been the scary, up and down, bumpy part of the rollercoaster ride. 

After spending a few short days at my Mum's house down the Gold Coast, we returned home, tired, full of Easter eggs and my youngest covered in Eczema again as he had an allergic reaction to my Mum's washing powder. He is irritable and itchy. His sleep patterns are all over the place and basically is out of his routine. Not particularly a good way to start off at school. Yesterday was trying as he resisted putting his uniform on and being in the classroom. Once again I found myself, walking up to the calm sanctuary of the Learning Support building, dropping him off to "Jeff", our angel in disguise (Learning Support Teacher) and running......  getting out of there as quickly as I possibly could.  I am so tired and drained. I have too many chores at home to do and to be honest, with no breaks over the school holidays, I was looking forward to some peace and quiet.

The day passed way too quickly. I was able to get in a morning run, and make a dint in a never ending mountain of paperwork.  I was expecting the school to call me, as I had a feeling, my little guy would be a challenge. But thankfully they didn't.  It's not to say that he didn't have a bad day... he did... well sort of. 

It was not "bad" in the sense of squeals, head-butts and distress but "bad" in a way where he pretty much went into his "Autistic World" and stayed there. He was distracted by his itchy skin. He wasn't able to sit for very long at his desk. He wasn't communicating or making eye contact. He was avoiding the other children who wanted to just smother him with affection. All his Autistic traits were heightened. His spins, toe-walking, little noises, flaps, another sensory overload. I cannot lie about the disappointment I feel when I hear about my son's actions.  Of course, I am saddened. But I need to remind myself... this is the "bad" part of the ride..the up-side down, twisting part where your stomach drops. It will be a time factor. He will settle again into his routine. He will come out of his world and rejoin his friends.  Luckily his aides, whom are very experienced with him, know just what to do in this situation. They just get me through each day. Slowly, carefully raising the bar when they can.

So now we are on the second day.  After a much needed longer sleep, he seemed to be more positive about going to school.  I think it will be a very bumpy week. We will need to take each day as it comes and just hold our breath until the loops end. His itchy skin will eventually settle and the rain Brisbane is currently seeing will dry up.  In the mean time, all the sensory equipment at home is in easy access for him. The mini indoor tramp, the swing and the trapeze. The the resources he needs to burn off his never ending energy. Warm baths, massages with oil especially around his calves, skin brushing and calm, soft music playing in the background when he is at home. No loud noises...just a very calm, peaceful atmosphere is what is needed.  Getting back into his routine, eating and sleeping pattern is another "must-have" task. But one that must be done in small simple steps.

I am often at odds with myself over.... whether to take a short holiday to the Gold Coast, breaking eating and sleeping patterns, the stress and drama associated with a visit to Nan's or whether just to play it safe and stay at home.  I guess by choosing the safer option, neither son has the opportunity to spend quality time with family, trips to the golden beaches - jumping in and out of waves, special attention that only Nan's can provide, the difference that a holiday can offer...the unexpected excitement of doing something out of the ordinary.  Even though it's hard..... flexibility and uncertainty faced every day is far more beneficial than compensating to my son's Autistic traits. I guess it is like, giving him a sense of "real life".  And when you consider that.....  all the challenges faced afterwards...are certainly worth it.

Amazing Discovery at GOLD COAST Park

Amazing Discovery at GOLD COAST Park.

Gold Coast City Council and Disability Services Queensland have constructed a special All Abilities Playground at Kurrawa Pratten Park, Broadbeach.

This play ground is fantastic..... It provides access for all children to experience fun, interactive and challenging play, while their families and carers watch over them in an enjoyable and relaxing environment. The playground is purpose-designed to reflect community needs and include sensory, motor, imagination and educational aspects of play.

Both my Mum who lives at the Gold Coast and I were awestruck to see so many fantastic opportunities for children with special needs. Upon entering the park, the first thing you are greeted with is...

A wonderful choice board using the Auslan Sign and Boardmaker Pecs.  My little boys was excited to see things familiar to him. He immediately pointed to where he wanted to go..... initiating communication.  Our family has been using Auslan Sign and the Boardmaker Pecs for almost 5 years.  Before I place any more photos up, all around the pathways are smaller signs called..."Have a chat".  I must say who ever designed this park is right on the money!

The Park is entirely fenced playground features several zones of play to address the varied play abilities and ages. The community was heavily involved in developing the playground concept. Fun days, workshops, and creative arts school based curriculum have all contributed to the playground design. 

The playground’s design features three zones - Sandcastle, Undersea and Hill – all connected via a network of pathways and six interactive community art projects, created by 70 special education students from six local schools. 

Other features of the playground include sand play, spring toys, stepping blocks, hill slides, a giant basket swing, sway swings, a flying fox and a carousel with harnesses.

Stage Two of the playground has a large sandcastle structure with sound tubes – pipes through which children can listen to each other speak over a distance of six metres; raised tables to enable wheelchair access and sand play; and a submarine and mermaid in the Undersea zone. 

The park also has an All Abilities change room. A key aspect of the All Abilities Playground is the amenities block which features an MLAK key access change room with a changing bench and hoist. It was developed especially for people with high physical support needs and their families. The facility is only the second in an outdoor playground in Australia.

I took numerous photos,but cannot upload any of children other than my own,but I did manage to get some from the Queensland Disability Website.

 

LEST WE FORGET

LEST WE FORGET

'As the Ode of Remembrance says,

 'At the going down of the sun, and in the morning, we will remember them'.'

Today marks 96 years since Australian and New Zealand troops landed at Gallipoli, kickstarting their first major military battle of World War I.  

The anniversary will be marked across Australia with memorial services, marches and, of course, games of two-up.

Anzac Day is also dedicated to commemorating the sacrifices of servicemen and women in all wars, including personnel currently serving overseas. 

   

AUSTRALIAN BUDGET BOOSTING DISABILITY

BUDGET BOOSTING OR JUST BOASTING  ?

Be careful who you follow.......

"The careful foot can walk anywhere. ~ Chinese Proverb"

Wonderful news ..... Yes..... But walk with caution here.... 

In life you do not get something for nothing. 

Rely on yourself and those whom you trust. 

Remember....  " We reap what we sow."  

"It always looks so easy to solve problems by taking the path of least resistance.
 What looks like the easy road turns out to be the hardest and most cruel."
    --Winston Churchill  

The Sunday Mail (Qld) 

Budget boost for disabled children

·         Samantha Maiden 

·       

·         April 24, 2011 12:00AM

EARLY INTERVENTION: Children with a range of disabilities, including autism, will benefit from up to $30,000 a year in support under a pending budget measure. Picture: Bruce Long Source: The Sunday Mail (Qld)

FAMILIES caring for disabled children have won access to up to $30,000 a year in next month's Budget to help with early intervention and support.

The $130 million boost to early intervention also includes new support for autism and delivers on an election pledge to offer a $6000-a-year Better Start for Children payment from July.

The Sunday Mail can reveal that 9000 extra families will now be able to secure up to $30,000 a year under the changes.

The Better Start for Children with a Disability payment will help eligible children with cerebral palsy, Down syndrome, hearing and vision loss, fragile X-syndrome, deafness and blindness.

Total support will now include up to $19,290 a year in carer payments, $2900 in carer allowance, $1200 in carer supplement and a $1000 carer disability assistance payment, plus the new Better Start for Children disability payment of up to $12,000, capped at $6000 a year.

"Bringing up kids is hard enough, without the added challenges that can come with a disability," Treasurer Wayne Swan told The Sunday Mail.

Autism programs will also be expanded, after more children registered for the Helping Children with Autism package offered in previous budgets.

The scheme, first launched in 2008, provides eligible children with up to $12,000 to secure early intervention including speech pathology, occupational therapy, physiotherapy and psychology services.

While 9000 children were expected to benefit, more than 12,000 families have now secured support, with the Government boosting funding by $30 million to help meet the cost.

The extra funding will help 3500 children into early learning programs including playgroups for children with autism spectrum disorders.

A backlash by mothers prompted the Government to dump plans to means test the 50 per cent childcare rebate.

 maidens@newsltd.com.au.

Many Blessings On This Easter Sunday Morning.

Many Blessings On This Easter Sunday Morning.