"Listen to your intuition...it will tell you everything you need to know..."
Anthony J D' Angelo
A Mother's Intuition is a powerful thing.....
When a Doctor tells you that your child is Autistic, and I am drawing from my own personal experience, you don't really hear too much more after that word is spoken.
I can remember the day so vividly. The chills that ran all over my body, the loss of breath, the tears welling in my eyes..... I could see our Paediatrician but her voice suddenly became distant and muffled. I looked over to my son who was sitting on the floor, staring off into the distance. His father quickly grabbing him, into a protective grasp. At that stage I can't even tell you what was said or what information we were told. All I can remember is that I couldn't look to my son's dad for support, he was defensive and angry.
I just sat frozen, tears running down my face, terrified over the fact that I may never hear my son talk.
I walked to the car park, holding my son so tightly, not wanting anything to hurt him. I can remember feeling sick, my face getting hot and my heart pounding. I listened to his father, angrily voicing opinions, firing blame. The thought crossed my mind.... I wish I had not perused this. I buckled my child into his car seat, closed the car door, and collapsed into a sobbing mess. My husband at the time..... didn't know what to do, or how to console me.
He was just emotionless.
I know how it sounds, but parents who have have gone through similar feelings and emotions need to express these . What it really felt like..... the sadness, the denial, the shock, the anger, the fear, the desperation and the feeling of hopelessness.
This is life. We have to go through these things because only then, can we rise up to
be the person we need to be.
When I look back over the years, I can see that this was my starting point. I felt the pressure. I knew that I had to support my son, love him unconditionally, whatever it took.... whatever the sacrifice. There was never any doubt in my mind, that I would ever give up on my child, but really.... I just didn't know how to help him. That terrified me. I think this is when I realised I needed to trust my intuition.
I have always looked for therapies that make sense to me. Kind of an "gut-feeling" I have when reading about different supports on offer. There are so many avenues out there claiming to cure and fix children with Autism. But really, I think the only thing a lot of these programs do achieve, is give families false hope and empty pockets. Since the Government funded HCWA package came into place, Australia has much more variety regarding therapy, but this is coming at a huge cost to families. The price-tag attached to go to a seminar, learn how to implement a program, resources, therapist fees, everything has increased ten-fold since approved organisations, realised that parents and family could claim fees on their allocated funding, with generally no-out of pocket expense. Yes it a relief to know that your funding is covering therapy and you have access to professionals, but who really benefits here? I can not see how it can be the families and children on the spectrum. Besides, from my experience the programs and therapies that do work, take time...... a long time. They cannot be shelved after funding runs out. That concept, even though is reality.... is incredibly harsh!
As a family we have looked into many different areas of support.
Speech Therapy for 4 years, (starting from when my son was 2 yrs old and first diagnosed),
Cost: $70.00 per session Length: 4 years Our family used: Max's House at Red Hill
I couldn't recommend anyone more supportive, focused, professional and effective as this organisation. (They took our family under their wings when my son was very young...guiding and learning together. They played a vital role in his development.)
A.I.T - Auditory Integration Therapy (which I can accredit my son's eye contact to)
Cost: $1800 length: 10 days
Applied Behaviour Analysis (ABA) through his various placements; not in the capacity of a therapist visiting our home for 40 hours a week: the cost involved there last I heard was around $30-40,000 per year,
Early Intervention through Autism Queensland
Cost: $6000.00 price tag, (but was worth every cent) length: 12 months
Sign Language
Cost $150.00 per session. Two sessions are really required. Length: 8 weeks/2.5 hours p/wk
(parents can do this at home)
TEEACH Therapy.
No available in Australia... but registered Professionals can enrol in a 2-day seminar. Cost is anywhere from $500.00-$800.00 (Resources cost extra)
Therapeutic Listening Program: provided through FECS (Disability Qld Occupational Therapist- luckily) Everyday day for 20 mins - trial was over 3-4 months.
Cost of System: $260.00-$300.00
Disc: $60.00 each (only for people who have done the accompanying workshop)
Whole Body Workshop: $795.00 (2 days)
R.D.I (Relationships Intervention Intervention (which is underway and on-going),
Cost: around $350.00 per month (RDI Consultant), plus $695 annual subscription to worldwide database, assessments are extra too.
Picture Exchange. Basics Training 2 day workshop.
Cost $363.00 (Parents can do at home)
Floortime : 3 Day workshop
Cost: $798.00 (3 days)
To adopt the program as therapy for your child you will also need a Floor Time Professional.
Occupational Therapist:
Cost: $80 per 45 mins
Cognitive Behaviour Therapy:
Cost: $200.00 per hour Length: Depends on what your Psychologist suggests after an assessment. (Our C.B.T is through Minds and Hearts at West End. They are the best and specialise in Autism and Aspergers. This is Professor Attwood's Practice.) Assessment are generally more expensive and come with a written report. Many Paediatricians wait until an assessment is conducted through Minds and Hearts, before they "sign-off" on the paperwork.
The Hanen Program:
A program for teaching communication strategies for children on the Spectrum up to the age of 6 year s old. Total cost of the program is $2600. Length: 20hours + a week.
The Hanen Centre has also brought out a new program called... "It takes Two to Talk". The cost involved here is around $3000.
The above information is just the start. As parents to children on the Spectrum, you also need to consider therapy resources, home modifications, private medical specialists to obtain referrals to more specialists and subscriptions to various associations like;
Autism Queensland, ABIQ, Aspergers Australia. Some of these things are not "must haves" but they are sources of information. It really depends on how far are you willing to go and how much are you willing to sacrifice for the sake of your child, children or family. It's a personal choice.
I guess for me..... it comes down to...... wanting to do everything I can possibly do and of course, being extremely resourceful. I have already said numerous times, educate yourself, read and ask questions, challenge and do not be intimidated by a lack of knowledge...it's the only way to learn. Resources can be made or bought second hand. Talk to other families to see what they do, research and apply for every possible grant or funding opportunity you possibly can. Try and save for the subscriptions to various associations as these are your avenues to source the grants and workshops. The University of Queensland offer some excellent opportunities for families who are willing to volunteer for study trials. Sometimes you can get access to Speech or Occupational Therapy with students under supervision. It isn't free but the cost involved is significantly less.
My next challenge is "Sensory Integration Therapy" along with the on-going "R.D.I". I am on a quest to learn more about Sensory Dysfunction. The more I read, the greater the fascination. I promise to divulge more as I work through the mountain of books sitting on my desk. But I do need to bring this point up..... as I was reading through "The Sensory-Sensitive Child" by K.A. Smith and K.R. Gouze, (for the second time), I came across a passage about the body's senses and how they work.....
"Sensations are desperate pieces of information that must be organised and interpreted by the nervous system so that our body and mind can adapt to the world around us on a moment-to-moment basis. We experience the world through the conscious awareness of sight, hearing, smell, taste and touch and the unconscious monitoring of balance/movement and body position....."
" These sensations are the building blocks from which we construct our experience of the day..... Our sense of well-being, our mood and even our interactions with others are strongly affected by these sensory experiences."
"when we think of our senses, we typically only consider the five that we are consciously aware of: touch, sight, sound, taste and smell. Actually, though, there are seven senses, and without the continuous integration of information from the other two - the vestibular and proprioceptive systems - along with one of the five- touch- we would be completely unable to function. The simplest activity, like sitting on a chair, would require constant concentration. We would not understand how far we could lean back in the chair without falling over or how hard we could hug our baby without hurting her."
Food for thought!
http://www.signplanet.net
www.maxshouse.com.au
http://www.pecsaustralia.com
www.mindsandhearts.net
