The Stormy Autism Waters.... and keeping your family boat upright!

The Stormy Autism Waters.... and keeping your family afloat!

As you know from my previous post.... the storm of Autism has well and truly set in.

I have been struggling to cope and "stay afloat....keeping my head above water."

Well as unpredictable as the ocean is.....so to is life.

Today the first sign that maybe the waters are beginning to settle.

Yes it's still raining, the boat is still rocking and winds are blowing....but today those waves didn't seem as big.

There are several things that maybe behind this little sign of hope....

1. The fact that I vented to you all last night, blogging.... thinking through some thoughts.... pros vs cons, reflecting.

2.  The fact that I have spent all afternoon with my eldest son's Psychologist, talking, crying, reasoning about everything that has been going on.  Just to hear him say.... "Yeah you are having to deal with a lot....."  was like music to my ears.

3. The fact that today.... for the first time in 4 weeks, my youngest son has had a great day. No head-banging, settled, happy, content. Even achieving 9/10 in a spelling test.

Just gorgeous!  When his aide told me this.....I hugged her!

So tonight... even though my head hurts from all the emotion and thinking.... and even though I am still run down.... I have a reason to smile.

Once that happens I have hope and know that I can make it through this storm.

I believe that there are some things in life we cannot beat or win or have in our favour.... acceptance is a great power!

Sometimes it takes more strength to choose to walk away from an issue or wait, saving ourselves for another battle another day.  It doesn't mean we are weak, nor that we have lost.... it means we are choosing what is right for us. 

Sometimes we need to stop fighting ourselves and see things for what they are.....

Have a great weekend.... I am hopeful we will too.

PLEASE, PLEASE..... TAKE ME AWAY.

PLEASE, PLEASE..... TAKE ME AWAY.

Usually I am an optimistic person.

Usually I am embracing each day, energised and ready to face the battles.....

But the past few weeks have driven me into a "funk".

My phone rings and I jump....knowing it will be my son's school telling me another incident.

This is occurring on a daily basis.

My youngest has not been quite right since his suspected seizure-type behaviour in week one of this term.

His behaviour can only be described as uncontrollable.

We have been to the specialists only to receive a wait-and-see....attitude.

But in the mean time, his school behaviour is very unstable. One minute he is demonstrating academic intelligence way beyond his years.... then the next.... melting down, into huge fits of anger and self-harming outbursts.

We are only 3 weeks out from his tonsil operation.

Then we will follow with a sleep EEG.

Finally the stage I am really torn over.... possible medication to sedate his irregular outbursts.

His continual "tantrums" and resistance to respond to limits is resulting in holes in the learning support teacher's walls...made by his hard head. Escaping and running from support staff to the point where he endangers himself.... regressing in his emotional regulation - regressing socially with his peers.  Everyone who loves and supports him is so concerned right now.

But...... the brunt of all of this is on my shoulders weighing me down.

His brother..... who has been doing so well, is also testing limits. Bringing a lot of aggression and anxiety into our home.  And me.... well lets just say I have not been "on top of my game" - handling things all wrong.... making huge mistakes.

So..... someone please tell me ?

Is it a full moon?

What is going on?

I have been getting to the point where, I am scared to have too much time on my hands. Maybe afraid of running. Feeling trapped and alone, I often wonder if my children would be better off living with their father?  Could he raise them better than I am? Can he give them more opportunities.... Could he give them a more stable future?

Where are my supports, I hear you say?  Well they are there. But as I said to my Mum only last night..... "There are some things you just can't help with."  

"I have to deal with this on my own.... they are my children."

My judgement is off.... everything you feel confident in knowing is suddenly unstable. Everything you believe in is suddenly questionable.

Like I said a "funk".

I get to the point where I feel that everything I do is under constant criticism.... feeling like I have just gone a few rounds fighting Muhammad Ali.

So what do I do?.....

Not sure here.  I have been trying to pull myself out of this for days. But when you are so mentally and physically exhausted.... it is just a challenge to face every moment of every day.

Maybe it's sleep.

Maybe it's a holiday.

Maybe it's  just a good cry.......

(Your not allowed to cry and show your emotions when you need to be so strong all the time.)

Maybe it's just a case of batting down the hatches and waiting for the stormy waters to pass.

I really do not know...... but it will come...... it has to.

Another wonderful article about Apps, Ipads and Autism.

Another wonderful article about Apps, Ipads and Autism.

App Wrap: "Scene & Heard,"  "SATLadder"

By: Adam Balkin

"NY1 highlights the coolest and newest apps for your cell phone or mobile device in the twice-weekly segment “App Wrap.” NY1’s Adam Balkin filed the following report."
For children and parents, Apple’s line of IOS devices can be a great resource for learning. Take, for example, “Scene & Heard,” which turns the IPad into what's called an “augmentative and alternative communication device,” or AAC for short.

Essentially, it allows kids with autism to both learn and communicate with others by pushing or arranging pictures, helping them clearly communicate what they're trying to say. What makes this app different from some of the others out there is that it allows users, parents or anyone helping that child to easily upload their own pictures, videos and sounds to create their own so-called “scenes.” Developers say that in doing so, the app can be customized to feel more comfortable for each user.      For example, if a child is trying to say something like “I want to pet the dog,” rather than using a generic picture, the app can be customized to use a photograph of the family pooch. There's a lot to the app, and developers stress that all features can be tailored specifically to the user’s needs to make him or her feel more at ease with it. Scene & Heard is available in the ITunes app store for: Ipad: $49.

There are also plenty of mobile apps that help high school students. Take “SATLadder,” which offers prep activities for the SAT tests with a twist: students are placed in direct competition with one another in a “head-to-head” mode.  Developed by The Learning Edge, there’s also a solo mode for just answering questions, but in head-to-head mode, students compete against one another through a series of questions. A winner is then determined. That winner can then move up the ladder, also known as the “leader” or “rankings” board. The more wins the student gets, the higher up the ladder he or she climbs until ultimately they get a shot at the top rung 
and bragging rights.
SATLadder, for IOS devices, has a free “lite” version that's just solo mode and a full version with head-to-head for $3.99.

http://www.ny1.com
05/24/2011: 02:58 PM

Researchers to examine different teaching models for children with ASD

Researchers to examine different teaching models for children with ASD

Scientists from the University of Miami, the University of North Carolina and the University of Colorado develop methods to measure how well schools implement teaching programs for autistic preschool children

Researchers from the University of Miami (UM) Department of Psychology participated in a multi-site study to examine different teaching models for children with Autism Spectrum Disorder (ASD). The study is one of the first to look at the fidelity of treatment models for preschoolers with autism. The findings are published online in the current issue of the journal Research in 

Autism Spectrum Disorders.

The report concludes the first phase of a four-year project to analyze the comparative efficacy of preschool programs for children with ASD. It involves developing and validating assessment measures to demonstrate that the classrooms in the study are actually implementing the teaching models at high levels of adherence.

The researchers found that the assessment instruments they developed accurately measured how well the models were executed in the classrooms and that these measurements were able to discriminate between diverse teaching approaches. The goal is for these tools to provide an evaluation method for intervention programs for children with autism, all over the country, explains Michael Alessandri, clinical professor of Psychology, in the College of Arts and Sciences, executive director of UM/Nova Southeastern University Center for Autism and Related Disabilities, (UM-NSU CARD), director of the Division of Community Outreach and Development at UM and principal investigator for the UM component of the project.

"This is an important first step. We hope that the utilization of these kinds of fidelity tools will enable schools to more closely monitor the degree to which intervention methods are being delivered, relative to what the model intends," he said. "If these useful methods are adopted, parents will have a way to assess the quality of their child's treatment."

The scientists looked at two comprehensive programs for autistic children in preschool: the Treatment and Education of Autistic and Communication Handicapped Children (TEACCH) and the Learning Experiences and Alternative Programs for Preschoolers and Their Parents (LEAP). The two models were chosen because they are well established and widely used in public school systems in the U.S.

The study took place in 34 classrooms, during four months of the school year. A maximum of four observations were made in each class. The findings may help explain differences in children's responses to different intervention treatments, explains Anibal Gutierrez, assistant scientist of UM-NSU CARD and co-author of the study.

"If we can ensure that the different programs are all good programs, implemented at a high level of fidelity, then we may be able to attribute differences in outcomes to individual child differences," said Gutierrez. "We could explain why children with a particular profile may benefit from 

one program over another."

Understanding how closely an intervention model adheres to its intended plan may also help to scale up programs within the broader community, explains Drew Coman, Ph.D. student in the Department of Psychology at UM and co-author of the study.

"I believe these measure not only provide a brief guide to implement one of these treatment programs, but they also provide a way to see the strengths of a particular classroom as well as identify the features that may need a bit more support and improvement," said Coman. "Ultimately, these measures provide a means to conduct such evaluations, and will hopefully lead to more support for teachers, better classrooms, and ideally improved student outcomes for students with ASD."

Source: 

University of Miami

http://www.news-medical.net

Published on May 21, 2011 at 1:49 AM 

A MOMENT TO SAY THANK-YOU FOR YOUR COMMENTS!

A MOMENT TO SAY THANK-YOU FOR YOUR COMMENTS!

I just wanted to take a quick moment to thank everyone in Australia and readers across the globe, for leaving very supportive comments on my posts.

I am so relieved and grateful that people are finding what I have to say entertaining and helpful.

As my son would say in his Spanish phase.....

"Gracias.... Gracias!"

FINALLY A RESPONSE FROM THE MINISTER FOR DISABILITY SERVICES.

I received an email on Friday in response from an email to the new Disability Services Minister that I contacted back in March.....  See what you think.  An answer without really giving an answer if you ask me!

Please find attached a PDF copy of correspondence from the office of the Minister.

Office of Hon Curtis Pitt MP,

Minister for Disability Services, Mental Health and Aboriginal and Torres Strait Islander Partnerships.