Take Me To Church. 

In case you were wondering , yes I was taken to Church! 

I loved going to Church as a child, and I always assumed I would do as my parents had done for me. That I would take my children to Church. After my son was diagnosed with autism the simple exercise of going to Church became challenging. A lot more challenging. Especially in my son’s younger years. 

I spent some time recently with a wonderful lady who is passionate about disability and church inclusion. I learnt so much from listening to her share about the work she has been involved in at her church to achieve this.  I thought about my own experiences and came up with a few ideas on how churches and faith communities can excel at loving, accepting and embracing children and adults with disabilities and their families. Here goes…

1. Listen. Churches need to listen to the parents, the siblings and the person with the disability. Really listen. We all desire to be heard and understood. Validating the journey is so important. Disability does not last a week or a month.  For many people it will last a lifetime so listen and continue to listen. Keep an ongoing dialogue. Church leadership and/or appointed key Church volunteers need to make a time to meet with the person or family, and at a location and time most convenient to them. Start with asking the question: ‘how can we serve you better?’ Don’t assume. Don’t pass the buck. Communicate and Listen. 

2. After listening comes a decision to make a heart change. This starts with the Church leadership. Make the attitude adjustment. I mean really go there. People often support the idea of inclusion until they actually have to make a change, or they find themselves outside of their comfort zone. Accommodations may be needed for that family or that person. The temptation may be to only think about the costs. Or the inconvenience. Making the decision to have an attitude change will make the practicalities of true inclusion and real acceptance so much easier. 

3. The National Organization on Disability found that  85% of people surveyed (both with and without disabilities) state their religious beliefs as being important in their lives, but only 47% of people with a disability attend Church at least once a month. What can be done to remove the barriers that prevent church members with disabilities from attending? I would encourage Church leaders to meet with its members, do some research, brain storm, set goals and make a plan to remove any and all of these  barriers. Check out the website disabilitiesandfaith.org – it has links to a range of faiths and denominations and loads of great info too! 

4. As Hubby says to me: ‘it’s not ‘them’ and ‘that Church’, it’s ‘us’ and ‘our Church’. I know what it is to be in Church leadership and I know what it is to be a Church member. Church leadership absolutely has an important role to play in setting the tone for an inclusive and welcoming culture. However it has been everyday church members, those without a title, who have often made the most positive difference to our Sunday experience and to our overall sense of wellbeing and belonging in our faith community. If every church member can ask ‘how can I serve this family or this person with a disability better?’ …then love has legs. And that is truly a beautiful thing.

5. Parents and Carers can feel isolated. Caring for a person or a child with a disability can be tiring. Practical help is always a blessing. In the case of my son his disability is not physical and can therefore be ‘hidden’ or ‘invisible’. If the Church can show kindness in practical ways it can make a huge difference. Making and delivering a meal, free babysitting, a cup of coffee waiting at church free of change, carrying a mom’s bag into church, helping someone to their car, watching a child after church so mom and dad can fellowship. Showing kindness in small and practical ways can be incredibly meaningful. It certainly has meant a lot to me. 

6. Don’t say stupid things if you can possibly help it. Think before you speak. As the old adage goes: If you can’t think of anything nice to say…well… You know the rest. 

7.  Say things like ‘Thankyou for making the effort to come today’, ‘You are doing a great job raising your child’, and ‘We are so blessed to have you here today’. Address the person with the disability. As a parent I don’t want people’s pity and I also don’t want be the reason somebody else feels like their life is not that bad. I always want my faith community to love and value our Kiddo.

8. My child is going to grow into an adult- true story! I want him to know and be assured of his place and value in our faith community both now and in the future. Having some of the young and older men in our church reach out to greet and connect with my son means the world to me and Hubby. Ted and Craig are two men in my Church who talk to Kiddo every Sunday. It blesses my Mama heart every time and I believe Kiddo feels accepted because these men treat him with kindness, dignity and respect. Yeah it even makes me teary. These men are the real deal in my book. 

9. Having a Children’s Program that can cater for children with special needs. My friend shared with me how she trained volunteers to be ‘shadows’ for children with disabilities, only stepping in if needed. She organized for each child in the program to have their own basket made up with instructions for the volunteer and other supports like visuals, schedules, fidget toys, favorite toys and even light coverings for a child who had struggles in that area. I believe children with disabilities should be included in the regular program to the fullest extent possible. I do not believe the parents should have to miss Service on an ongoing basis to make this possible. Yeah- see Tip #2. 

10. Then Jesus said, ‘Come to me, all of you who are weary and carry heavy burdens, and I will give you rest’ [Matthew 11 v 28 NLT.] I don’t have a disability but I am sure it can cause one to feel weary. This promise from Christ Himself is one I would love to see fufilled for all people with a disability who come to Church. That they would experience it as a place of rest, acceptance, inclusion and love. Wouldn’t that be a wonderful thing! 

I would love to read about any ideas you have to add to the list. Or any experiences you want to share are always welcome ! 

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Early Intervention: a reflection

‘That’s INTENSE!’

I said this the other day and my son asked me ‘What is intense Mummy?’ I replied: ‘It’s when something is really Full On…then you say ‘that’s  intense’!’ Not my finest definition, especially given that I am not sure Kiddo understands what ‘full-on’ means.  It was all I could come up with in the moment.

The word INTENSE and my definition to my son landed in my head again when thinking about the topic of Autism and Early Intervention for this post.  To be honest, I have had this post about Early Intervention sitting on my desk top (half written) for about six months now…the working title has been:  Early Intervention: The key to what….exactly?

Every article in the known universe, and every professional working in the field of autism says Early Intervention IS.THE.KEY. My question is ‘The key to what exactly?’

Best outcomes, or even better outcomes for your child, right? That’s a little bit of ‘therapeutic  jargon’  I have been thinking I would like to unpack-by asking some more questions of course!

What does ‘best outcomes’ even mean? What does that look like?  What does that look like for my child. For my family? In my real life?  My Kiddo celebrated his sixth birthday last week.  By most accounts a child ages out of early intervention around this age. What ‘outcomes’ has my son achieved by the grand old age of six? Do I need to wait until he is an adult to know the real answer to the ‘better outcomes’ question?   What happens when the early intervention stops? What’s next?

Does ‘Early Intervention’ live up to the hype?

For me early intervention was long.  My son was just a baby by autism therapy standards when he started out with intervention at 19 months of age.  That’s about 4.5 years worth of an intensive therapy program -a long stretch by anyone’s standards.  The years did not fly by either.  It was a long time, and it felt like a long time.

It was also effort. HUGE amounts of effort.  It was money. A lot, seriously A LOT, of money.  It was hard work. Damn hard work.  For all the time, effort and money…did it do what ‘they’ say it would do?

Well…yes and no.  This is where things get a bit tricky. My own opinion of what ‘good outcomes’ are has evolved and changed over the past 4.5 years.  My understanding about autism has changed.

When my child was first diagnosed I was not given much hope of ‘good outcomes’ for him.  I was secretly hoping the professionals had got it wrong.  The diagnosis that is. If he just starts talking I thought…then he won’t have autism anymore.  I was hoping the whole mysterious autism thing would somehow, magically, just go away. The same way is had appeared. ..from out of the clear blue sky…from nowhere anyone could really explain.

Then I started to read up and talk to more professionals, and then I realised that autism was not going to just go away (dare I say ‘Jenny McCarthy on Oprah show’ style). So  I clung on to Early Intervention as “THE ANSWER”, even “THE CURE”.  The holy grail for me was “NORMAL”.

By the time my son was the grand old age of TWO I was so exhausted from the fear, the pressure, the isolation and the work load I started to literally feel sick.  I was crawling on my hands and knees to bed at night because my legs would no longer hold me up.  Out of sheer necessity I started to make a shift. I began reading and watching clips by Temple Grandin (an adult with autism) and I started to redefine autism as a different way of processing the world. A different way of thinking.  Different not less.  ‘I love my child, but I hate the autism’ was how I felt now.  I still wanted to kick autism in the groin. Hard.

By the time my son was age THREE I felt differently again.  I was seeing my son’s personality getting stronger and stronger.  He had now been in therapy for almost half his life now. I started to think less about autism and more about him as his own person. He was a joy!   Hard work still. But I had  more of an ‘it is what is it’ attitude. That crippling fear I had that somehow autism was going to rob me of my child was gone.

By the age of FOUR the three things they (the diagnosing professionals) said may never happen-had happened.  My son was toilet trained (day and night), verbal (delayed but definitely verbal) and he was a socially interested and socially motivated child.  Also his cognition was proving to be on-par with typically developing peers.  At diagnosis it was stated that he was intellectually ‘at risk’. I now started to view developmental assessment reports more as opinions and guidelines, rather than fact or truth.

By FIVE my son was headed into a mainstream class with supports.   I now had to make a shift again. I knew my son was not going to have the kind of autism that could ‘fly under the radar’- as I had seen with other kiddo’s on the autism spectrum.  It was time to let this one go.  I started to work more towards others being accepting and understanding of my son’s differences. I started to model this with intention..and I started to write this blog. I felt it was time for the world to see that this was not a one way street. The world needed to do their part to meet my son half way so to speak.   He sure as heck had done his part.

Now my son is SIX.  Today it is about my son being his best autistic self.  Autistic is a term embraced by those with autism-so now it is fine by me.  Talking and listening to autistic adults (Ibby, Karla, Sparrow Rose, Jonathon and more) has been something I wish I had done more of early on, but I am here now and I am listening to their words.  It has been liberating actually.

For our family today best outcomes means our son is safe, competent and loved (thank you Bill Nason on FB’s ‘Autism Discussion Page’ ).  Sure there are days when I want to wish away the painful struggles that come with autism. I am happy to say in terms of us going forward that EARLY Intervention for my son was not really ‘the key’ but more of a foundation. One that he can continue to build on in the years ahead.  I guess my son will be the judge, and I know the day will come when he will share with me about how he found those ‘early intervention years’ and be giving me and hubby some performance feedback.  Fingers crossed- I hope we did good!  Early intervention was not only about my son however, it also put me on a steep learning curve about life, differences, disability and autism, gave me a different perspective on what is important, and put me in contact with many amazing and wonderful people, and families.   Early intervention really has been the key for me to change.

A Round Up of April and May.

The last two months have been a busy and interesting mish-mash of events.

Lego Time: Daddy and Kiddo

Lego Time: Daddy and Kiddo

There has been a lot going on autism-wise.  I completed a very detailed research questionnaire conducted by the Curtin University of Western Australia about the expense involved in raising a child with autism.    I was appreciative that this topic was (and is) being considered in a formal way.  In terms of how much it has cost our family to raise our son in the past few years the short answer is: a lot.   The long answer would have to be a topic for another blog post.  A few weeks later I met with the researchers (three of them) conducting the survey to talk and give feedback about the ‘Expenses’  questionnaire and talk about other research projects they have on the go.  Two in particular were discussed, the first was community mobility and public transport use in adults with autism or Asperger’s Syndrome (contact tania.barnett@student.curtin.edu.au if you or your adult child want to be involved in this study).   The researchers were particularly interested in the role social media might play in helping them ‘make contact’ with adults on the spectrum who might want to contribute to the study.  So they asked questions about my blog, who reads it etc as well as my other ventures into social media such as online support groups.

Expenses Questionnaire

Expenses Questionnaire

The second topic we discussed was the early detection and formal diagnosis of autism.  I was so touched by the keen interest of these  researchers in hearing my ‘journey’ from the early detection signs to the formal diagnosis of autism for my son.  Those first six months of 2009 are etched in my brain forever, and I have analysed events from every possible angle over the past four years.  A few psychologists have shown some interest over the years, but I have never had anyone ask about the tiny details, each and every step, my thought processes and the intense struggle of that year.  To be honest it was incredibly therapeutic to talk about my experiences with people who may be able to turn the ‘story’ of my family and my Kiddo into something that could assist other families.

I have also recently been involved in another research project called the PRISM study by run Dr Andrew Whitehouse and his team at the  Telethon Institute for Child Health Research.  This study consists of pregnant mothers who have a child/ren with autism.  No surprises as to what these researchers might be looking for!  For more info see the website http://www.childhealthresearch.org.au. So far I have had three scans, my hubby and I have completed a number of IQ-type tests,  given blood and saliva samples, and our son has completed two autism assessments (the ADOS and the Mullen).  I believe cord blood will be collected at the birth of my second child (a mere five weeks away now!), and her (yes, its a girl!) development tracked for two years after birth.  I have mixed emotions about being involved in a study like this one. Dare I say an exploration of that topic would have to be in (yet another) blog!

I should add here my second pregnancy has been (in a good way) entirely uneventful.  The back pain is no fun right now.  The frequent bathroom breaks are annoying.  I feel tired a lot.  But other than that-its been ‘drama-free’ and gone by quickly.  To be honest, it feels like a carbon copy of the pregnancy I had with my son.  My hubby and I (supported by his school) have started preparing our son for his new sibling.  This included school making a gorgeous reading book for him.  The baby sister drawing by Kiddo on the front is too cute!

A special book for Kiddo

A special book for Kiddo

I feel an overwhelming sense of delight at the thought of my son meeting and having a baby sister.  Coolest.Thing.Ever! This child will also round out our family to one of four.  Hubby had a vasectomy last week, and the jokes are abounding in this house at the moment.  Also Kiddo thinks two adults groaning (one with back pain and the other groin pain)  every time they get up is cause for hysterical laughter.  His line: ”groan-again mummy, say that “aarggghhh” noise again-daddy-hahahahahahahaha!!!  And just like that, the child bearing years are over.

On a less eventful note I also attended a school funding forum yesterday (yes, with my dodgy back suffering on a most uncomfortable chair) discussing continued funding for children in schools with disabilities.  It was really targeted at school educators and administrators.  The Federal government funding is called More Support for Students with Disabilities or MSSD.  Always gotta have an acronym!  Basically the schools who had received these funds in the last round of funding had to present (justify) the expenditure, and also make a presentation that would hopefully secure more funding for the future.  My son’s school was one presenting.  I was asked to give a parent perspective, but then later I was not needed.  (I will however post my little speech for you to read about my son’s school).  I came away from that forum thinking its not just the parents who have to fight for and justify the funding and support they need for their own children, but the professionals who work in this field also have the same struggles.  Money. Seems to be a theme in disability.

The theme continued at a Federal level with the Budget being introduced this month and it included funding the NDIS, now renamed Disability Care.  The PM then introduced the legislation to Parliament, and did so in tears.  Now the WA State Premier appears to be the last one holding out on signing up to this scheme of universal care and support for eligible people with disabilities.  I will, along with the rest of  those concerned about such things in this State and nation, stay tuned for the WA Premier’s next move.

And that’s about it.  I have a little talk lined up for the end of this month at the disability support organisation Kalparrin- see http://www.kalparrin.org.au.  My son is travelling along nicely, and gets funnier by the week.  Seriously, I need to start writing down some of the hilarious things he says and does to share with the blogosphere sometime soon.  So basically out of this one post I think I have another given myself another four or five to write…  But then again I just might have new topics to write about once June rolls around, bringing with it the great pleasure of meeting my little girl.  Happy days!

In 100 words or less

I was recently asked to write an article for the wonderful organisation ‘Kalparrin’ http://www.kalparrin.org.au/ in Western Australia that supports people with disabilities and their families.  An honour!  The tricky bit was the brief. To write an article in 100 words or less about my journey raising a child with autism.  Seriously ten pages would have been easier than 100 words!

I did write the article…but it was 222 words.  I am sure it will be edited down to fit into the newsletter.  Fortunately I have the luxury of posting it here in its entirety! Next time you have time on your hands try writing about your own child rearing experiences in 100 words or less.  Brownie Points to you if you can do it!

April is Autism Awareness Month

by Kaz Brooks

My son was diagnosed with autism at 18 months of age.  Suddenly all the things parents take for granted in their children no longer came with a guarantee for my child.  I’m talking about language, behaviour, toileting, sleeping, going out, being safe, and having friends.  After the diagnosis and the blur of grief I swung into action and set out to ‘Fix the Problem’.  I thought if I could only get my son to do A, B, C, and D then things would be ‘OK’.  As the months flew by I realised there was no ‘Quick Fix’. Four years have passed now and I approach autism, and what is means to be ‘OK’, very differently.  My son having autism means that he is a passionate, outgoing, funny, and adventurous person, who also has a disability.  Having a disability means he needs support, accommodations made, understanding and acceptance.  It is also important that he is part of an inclusive community, where people have an awareness of autism, and where people with autism are listened to and treated with dignity and respect.   My hope is that this fantastic boy of mine will be afforded every opportunity to fulfil his potential and will grow up to be the very best adult with autism that he can be.  That would be MORE than OK with me!

Kaz Iphone pics Feb 2013 149Thanks to “Mommy Buddy” (on FB) for the pic!

The Sequel: just because it is, doesn’t mean it should be.

This is part of two of my previous blog post (see here for Part 1- http://wp.me/p2DdBD-6f ).  Just a quick review …in the disability system in Western Australia I have experienced many instances of ‘just because it is, doesn’t mean it should be.’ This is part two of my list of things I would like to see changed, improved or addressed:

11. Waiting lists. They are no good and yet they seem to be accepted by the ‘powers that be’ as a part of normal life. It’s not like people are waiting for a new part for their car or for a haircut. These are children and families who often have desperate needs. These are children who really need a developmental screening, an assessment, a diagnosis, and to receive treatment and therapy services. For a ‘system’ to make people wait any more than a month for any of these things is again, just no good. Infact maybe government could legislate that once a request for any of these services has been made, the ‘disability/medical/mental health care system’ has a reasonable time frame (I’d say 30 days) in which to provide them. Recruit and train the people, hire the staff, create a placement and behave in a way that upholds Australia as a humane country that has a heart. One mum put it this way: ‘when a child needs to be seen, they need to be seen that week, not in seven months’ time.’ Ain’t that the truth!

12. Dissemination of information. This is one mighty troublesome aspect of the system that actually motivated me to start blogging. I would often be scratching for a pen and paper in car parks and waiting rooms to pass on information to other mothers who had never heard of or been informed about electricity rebates, Health Care Cards, Carers payments, Medicare entitlements, Companion Cards and the list goes on. Every mother I spoke to was grateful for the information I shared with them. The fact that information is not clearly passed on to families highlights the disjointed and fragmented nature of the system, and the reality that often the left hand does not seem to know what the right hand is doing. Not only is information not being shared with families, but at times it seems that what is passed on is incorrect information. One obvious example of information that could be more adequately passed on to families would be the Carers Adjustment Payment available through Centrelink. Never heard of it? Read this blog post from “It’s The Little Things” to learn about it: http://itsthelittlethingss.blogspot.com.au/2013/02/carers-adjustment-payment-my-tips.html?m=1

With time and age limits on certain services, funding and rebates, an adequate system of passing on information becomes even more critical. Once information is disseminated in a more streamlined, systematic and co-ordinated fashion to families then maybe we can move on to the paperwork issue…

13. The paperwork issue! The number of agencies I access to keep all the balls (and acronyms!) in the air at any one time amounts to a job in itself. There is DSC State funding, Federal Funding (FaHCSIA/Better Start), FLI (and other grant based) funding, Respite funding and services (HACC), Child Care (plus Child Australia and Communicare for an aide in the child care), Centrelink (HCC, Carers Allowance, Carers Payment etc), Medicare and Medicare Safety Nets, school , Private Health, private pay therapists and more. I am good at paperwork, but the sheer volume and amount of repetition required by (often exhausted) families of a child with a disability is enough to bury anyone. The system is fragmented, confusing, exhausting and often disempowering. Information, funding and paperwork could surely work (even ‘flow’) along a clearer, more streamlined, and co-ordinated system where agencies can actually ‘talk’ to each other and (with permission) share information. Case in point-my paperwork ‘bucket’!

photo (10)

14. Individual Profiles: I raised this point in the last post about a lump sum FaHCSIA payment for autism early intervention…let me expand a little. Complex needs require thoughtful and individualised solutions. It’s about allocating funding appropriate to the level needed for best outcomes, not just a set allocation that is given to everyone who gets a certain diagnosis. Many disabilities run along a spectrum (not just autism), and often children have a different starting point. Also some can respond quickly to treatment and others move slower, and many times a child can have multiple conditions and that needs to be factored in. Some children can also respond better to different therapeutic approaches. It’s time for our system and the professionals in it to really take the time to look at the individual profile and needs of the child and plan and review accordingly. I would like to leave behind the rigid and inflexible ‘one size fits all’ approach currently used, in order for funding to thoughtfully reflect the level of intervention, treatment and services needed for best outcomes for that individual child.

15. The consult model of therapy. I am definitely no expert in service delivery models but I think it’s time to have a good hard look at the consult model of therapy used by many allied health professionals in our current system. I think the tough questions need to be asked: Who does the consult model really serve and who does it benefit? From what I have experienced there is often A LOT of driving to and from appointments. These appointments usually last no more than one hour, and there remains at the conclusion of each appointment a heavy work load and expectation on the parent to have to implement the strategies suggested and ‘make it all work’. Not only is it labour intensive, it can continue for years for the child and the parent, plus it’s a financial burden to the family when multiple specialists are needed, and the hourly rate is expensive. I would love to see a more a multidisciplinary model (with in home and/or centre based services) where the therapists can really implement more of the therapy work themselves. Having more adequately funded ‘one stop shops’ in a State that’s as big as this one would be beneficial not only to the children who thrive on routine, consistency and familiarity, and also in alleviating the workload on families. These ‘one stop shops’ could exists in a variety of formats, such as within the childcare system, as therapy centres or within the education system. So this leads to my next suggestion…

16. Education for 3 to 4 year olds. In WA part time Kindy starts for children at four years of age. With many children diagnosed with a disability under the age of four (including children with autism), there is a definitely a gap in the education market to cater for the learning needs of 3 to 4 year olds. I would love to see the school sectors (State, Catholic and Independent), the Disability Sector and the Universities come together on this and take a collaborative approach to providing early intervention school based services for this age group. Professional and quality early intervention is key to achieving best outcomes in the two settings children spend most of their time-home and school. A year in the life of a young child with special needs is a long time and starting an early intervention school based program that bit earlier could make a world of difference to their future.

Someone else thinking along similar lines (but using a child care model) is Stephen Breen who is the WA Primary School Principals’ Association President. He said in The West Australian newspaper on 11 Feb 2013 that he wanted to call on local, State and Federal governments to cut red tape and allow the Education Department to join private providers to develop child care centres on school sites. He was quoted as saying (and I have highlighted my favourite part!) “Primary school sites are the logical place to build a full wraparound centre that not only caters for child care but enables early intervention strategies to be developed at implemented at a local level. The present system is ‘hit and miss’ and lacks a whole of community coordination.”

17. Inclusion. It seems to be the favoured word on the street when it comes to education and the education system. It’s just I often find myself asking ‘what exactly do you mean by inclusion?’ When the child with the disability or learning difficulty is in a mainstream classroom they have to ‘manage’ being around thirty of so other children. I am all for inclusion but I also think it should mean more than ‘plonking’ a child with a disability in a mainstream class, hoping for compliance, and believing we are being wonderfully progressive by doing this.

The child may or may not have aide support, they also may or may not have a teacher or a aide who is educated about their particular needs. Sending out inclusion specialists from Head Office to train the staff can help, but for some children and the staff it may not go far enough. Real inclusion requires a whole school approach, a commitment from staff and other parents, ongoing and regular training and support. It could mean placing speech therapists and other specialised services in schools, it could mean having smaller class numbers in some mainstream classrooms. Inclusion is where reasonable accommodations are made, staff have the skills and ability to facilitate and scaffold meaningful interactions between the child and his/her peers, behavioural strategies are actually implemented, social skills are taught to ALL the children, and where the class as a whole can adapt to have the extra supports in place (visual, environmental, sensory etc).

18. Other schooling options. The flip side of the inclusion debate for schools relates to those families who decide that mainstream is not a suitable environment for their child. They may decide to home school or send their child to an Education Support School (all special needs children). These parents do not deserve to feel penalised or judged for this decision. Professionals must be able to honestly and openly advise parents of ALL the schooling options available to them and not ‘force’ mainstream, particularly if it will cause undue stress on the child and the family. It is a fine line for sure. No one wants to go back to the bad old days where inclusion was not an option, but in some cases mainstream (as it exists today) may just not be set up or resourced in a way that allows the child (or the family) to be happy and successful.

19. A generalist approach. Here’s a list of areas I have found to be relevant to autism and autism intervention: inclusive early intervention centres, day cares and programs, structured play dates, community outings, sensory integration, PECS, behavioural strategies, developmental approaches, feeding, sleeping, toileting, generalisation of skills, data collection, recording of information, goals setting, therapist accreditation, training and supervision. From my experience with autism it’s not about being a specialist in one thing or in one approach. Autism is pervasive (hence PDD) and the system needs to have people trained to be generalists who can work with and help children and families across a wide range of areas. Specialists can know a lot about their therapy approach, but when they put down other approaches that are not the ones they use and are not open to discussing other approaches with parents …that is just not cool.

20. Some Facebook research: this revealed a few more pressing issues for families. They included a desperate lack of therapy services in rural and remote areas, and even outer-lying metro areas. A lack of services during school holidays, the expense involved in getting an autism diagnosis (some families out of pocket thousands of dollars), the almost non-existent support available for children who have special needs but who did not meet the standards needed for an actual diagnosis, and also the high expense incurred by families in buying mobility equipment (wheelchairs, frames, vehicles, etc).

The final word came via FB from Samantha C (with some help from disability advocate Stella Young) who said: “ I want for people (with a disability) to be given what they need in order to be who they are. (I want) for the uber wastage of band aiding issues and overworked Carers to be abolished in favour of actually properly supporting people with a disability and their families. That can’t happen until there is a change in thinking and a shift in the power balance. We don’t need people to do things to us and for us, we need them to do it with us.”

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Artwork by Kiddo!

Just because it is, doesn’t mean it should be.

I watched the movie ‘Australia’ last month and one line from the movie has been playing over in my mind since I watched it. It was said the first time by Nicole Kidman’s character and then it was said again later in the movie by Hugh Jackman’s character.

The memorable line: ‘Just because it is, doesn’t mean it should be.’

In the disability system in Western Australia I have experienced many instances of ‘just because it is, doesn’t mean it should be.’ I have a top 20 list of things I would like to see changed, improved or addressed – it will be coming to you in two instalments. This is the original top ten post and a sequel will be released shortly…!

  1. ACROD WA. Please refer to this picture below re issuing parking permits!photo (9)If there are not enough car bays currently available then the State planners need to make more available. The inability to find ways to cater for the sheer number of families with autism who should have this car bay available to them is no excuse…find a way…please… pretend it’s your child who has had too many close shaves on busy roads and car parks…especially before asking if I have tried ‘education’ to address the running off behaviours my son has (someone at ACROD WA actually said that to me!). Then check out http://www.awaare.org
  2. Medicare. Seriously somebody from this office needs to get in contact with me! The list of problematic areas in this ‘system’ in relation to autism and disability are truly staggering. I often find myself asking if the people who made up these ‘rules’ actually have children, let alone children with a disability. I won’t go into ALL the boring details… here are just a few of them…Do we really need to have the ‘client’ at every consult to claim Medicare?; Do we really need to go see the Paediatrition and/or GP every time we want a referral to a Medicare-rebated allied health service?; Does there really need to be a such a limited cap on the number of allied services available per year or per a lifetime?; Do the gaps need to be so big between the amount Medicare rebates and what allied health providers actually charge?… etc and so on… and while on the topic of ridiculously large gaps…
  3. Private health insurance could re-think a few things also…the gaps are insane for allied health services…and again complicated enough so that everyone stops listening two sentences in to someone (ie-me) trying to point out the flaws! Also if private health could kindly provide some insurance cover for ABA therapy and other evidence based therapies for autism that would be fantastic too!
  4. State funded service providers. I sent the Disability Services Commission (DSC) of WA a letter on this issue 2.5 years ago. My desire is to see a greater range of state funded service providers available both for early intervention and for school aged services. This would give parents greater choice, and help to reduce waiting lists…which, by all accounts, seem to be too long. I would also love to see DSC make life easier for service providers wanting state funded placements by making the application process and times to apply less convoluted and more frequent. With most of the service providers having approval for federal funding (FaHCSIA) maybe common sense could prevail and all approved FaHCSIA providers could be made eligible for state funding also… and thus cut down on the paperwork!
  5. Which brings me to the issues with FaHCSIA funding/and Better Start funding. This funding system needs its ‘crinks’ ironed out rather urgently! The main problem being the age cut off for funding. It just makes me want to cry every time I hear about another family who ‘just missed out’ with the cut-off age, and then hear how long they had to wait to get that diagnosis and how many times they were told ‘let’s just wait and see’. Also the amount of money that is given to every child often does not match the actual needs of that child. Sometimes it does and that’s great! But somebody needs to be reminded again that autism is a spectrum and when it comes to dishing out funds that are supposed to make a difference- it is not a level playing field. For some $6,000 a year for two years changes the child’s life dramatically for the better, for others it is a tiny drop in the ocean. Some families in rural areas often do not have anywhere to spend this funding. Its also a problem having to wait until a new financial year to access the second instalment of funds, which leads to gaps in services and diminished outcomes for the child. Still on the FaHCSIA issue…what in the world is with the two year limit on funding?! Big mistake right there, HUGE. I have never met a family who has a child with autism who no longer needed any intervention after two years-not one.
  6. Expanding the Autism Advisor program to include an Autism Response Team. Professionals who can actually go into the family home and provide intensive (and even after hours) in- home parent training and consultation, plus support for community outings, challenging behaviours and accessing services.
  7. Local Area Co-ordinator’s (LAC’s). They seem to have massive case loads and a huge variation in service delivery for families. I personally LOVE my LAC. However, feedback on the ground seems to be that A LOT of parents have no idea who LAC’s are, what they do, what they can offer and what on earth to ‘ask’ for or about when they do receive a visit. Maybe the role of the LAC could be better promoted and clarified…so everyone can experience a level of satisfaction with their LAC. I think having some idea about autism should be a pre-requisite for this job. Also LAC’s having the ‘power’ to decide who is ‘needy’ enough for their services and who is not seems…well…wrong.
  8. ‘The wait and see’ approach really needs to be revised when it comes to assessing young children with autism. If the child is deemed to be ‘at risk’ then services and/or parent training should begin. What exactly are we waiting for? Autism is not rare, it is common. It is also serious if not addressed and it’s also not harmful for a typical child to receive intervention services. Every research study ever conducted points to better outcomes for early intervention. So don’t say ‘wait and see’, instead say ‘ let’s get to work’ and ‘here’s what you can do to get started’ . What about a system that also says ‘no – you don’t need a definitive diagnosis to access this training and these services, and by the way come back again every 3 to 4 months (as opposed to come back in a year or two) until we can clearly rule out or confirm an ASD.’ Yes- that’s sounds better! A year ‘lost’ could mean the difference between a person with autism talking and never talking…if I was a professional working in the diagnostic field I would want to err on the side of action if it was warranted.
  9. Universities in WA are great! I have degrees from two of the four Universities in this State. My read is that universities could really do more in the area of autism. They could be providing comprehensive training and hands on experience in Autism and a broader range of therapies such as ABA, floor-time, speech therapy, sensory integration, functional behaviour plans, programs and IEPs, counselling and family guidance for not only teachers, but speech therapists, OT’s, psychologists, counsellors, and GP’s. These professions could all benefit from more comprehensive and specific tertiary level training and experience. Also providing free/ low cost services for families with children with disability could be a nice community service these Uni’s could provide and thus give the students some more real life experience under supervision. There seems to be more than a few graduates entering work in the disability field who (in my humble opinion) are under-equipped for the job and need more training and better supervision.
  10. Occasionally some therapy service providers hand out set questionnaires to families. It’s just that for the most part they are not asking the right questions and are often worded in such a way as to prop up a service in a system that has serious flaws… the questionnaires (if issued at all) typically avoid asking questions the service provider really just does not want to hear the answers to. It’s not so much about the questionnaires…what I really would love to see is greater avenues available for real advocacy and for grass roots feedback and change in relation to services and funding in the areas of disability and autism.

When I talk about these issues I might seems like a just another mama ‘ranting’…so combat that vibe with imagining it is Nicole Kidman or Hugh Jackman who was saying all these things to you in a sexy voice … and think how great that would be… and then stay tuned for the release of the sequel!

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Grab A Cuppa: my (ever expanding) autism blog-roll

Since I began blogging a whole new world of people, and their words, ideas, thoughts, and inspirations have come into my life. I never knew so many people blogged and read blogs! Now I do both. I just wanted to share with you links to some of the blogs about autism that I read. Some I read regularly and some just occasionally…There are more that I want to (and could) add to this list…but right now the pregnant mama is tired and needs to go to sleep! I also want to let you know that I’m waiting for my hubby to show me how to add a blog-roll to my own blog page- (actually…maybe I’m just waiting for him to do it for me!).

Grab a cuppa, pull up a couch, put your feet up and enjoy this list!

cup of tea photo

Autistic Bloggers:

“The Aspie Side of Life” : http://aspieside.wordpress.com/

“Tiny Grace Notes: AKA Ask an Autistic”: http://www.tinygracenotes.com/

“Unstrange Mind: Remapping My World”: http://unstrangemind.wordpress.com/

“O The Places I’ll Go: My Life With Autism”: http://makingprogresswithautism.blogspot.com/

“Stimeyland”: http://www.stimeyland.com/

“Yes, That Too”: http://www.yesthattoo.blogspot.com/

Autism Parent Bloggers*:

“Mommy Buddy From the Planet Autism”: http://mylittlemartian.blogspot.com/

“Autism Daddy”: http://www.autism-daddy.blogspot.com/

“Flappiness Is”: http://www.flappinessis.com/

“Raising Rebel Souls”: http://raisingrebelsouls.blogspot.com/

“Reinventing Mommy”: http://reinventingmommy.blogspot.com/

“Go Team Kate”: http://goteamkate.com/

“Mama Be Good”: http://mamabegood.blogspot.com/

“Just a Lil Blog”: http://blogginglily.blogspot.com/

“Autism and Oughtisms”: http://autismandoughtisms.wordpress.com/

“The Tumultuous Truth”: http://sharon-theawfultruth.blogspot.com.au/

“Different Kinds of Normal”: http://differentkindsofnormal.blogspot.com.au/

“Snagglebox”: www.snagglebox.com (Practical Parenting Help)

* Many of these Parent blogs also have the Facebook pages and Twitter accounts.

FaceBook Pages

http://www.facebook.com/paulakluth (Paula Kluth has her own website and writes books)

http://www.facebook.com/AutismWithASideOfFries?fref=ts (also blogs)

http://www.facebook.com/pages/Big-Daddy-Autism/106568736068490 (blogs and has written a book)

http://www.facebook.com/ollibean.disabiliity.done.differently (Uniting disability-centric news)

http://www.facebook.com/thautcast?fref=ts (ThAutcast)

There is enough inspiration and information on all of these sites to keep you going for years to come! Thanks for reading x