In Search of a Book Title.

I am pleased to say there is movement at the station and my #KazBrooksBook project is coming along very nicely.  I am super excited!.

Kiddo at the Beach (a possible book cover photo) !!

Kiddo at the Beach (a possible book cover photo) !!

So the back story to this post is that I left Hubby to handle things on the home front last Wednesday night and I went out with friends and had adult conversations and laughed a lot.  The conversation turned to the topic of my writing and then to book titles.  So here are the ideas that were talked about at the table with my friends and now I am turning them over to you. Yes, you! I would love to know your thoughts and receive feedback, either by writing the number of the book title you like the best in the comments or feel free to play around with the title and the tag line and give me new ideas.  I am open to any and all suggestions!

Proposed Book Titles are:

#1 – At the Skatepark & On The Spectrum: Dropping In On Autism & Early Intervention.

#2- Engaging Kiddo: A Mother’s Story About Parenting her Young Son with Autism.

#3- As I Held My Breath: Parenting & Life on the Autism Spectrum.

#4- The Way We Roll: Parenting, Autism & Family Life.

#5- Snack-food, Sunshine and Skateparks: A True Story About Autism, Early Diagnosis & Early Intervention.

#6-Parenting a Young Child on the Autism Spectrum: Stories, Tips, Ideas & Inspiration from a Mother & Her Son.

thoughts, feedback…go! Muchas Gracias amigos!

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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 ! 

Be Nice To The Autism

One of the current goals I am working on with my son is expanding his expressive language. It basically involves using a variety of different prompts to let him know he needs to give me more language.  It started with a verbal prompt, then just a gesture, we then faded the prompt to a facial expression that says ‘you need to expand on that sentence buddy!’ Yes, believe it or not, there is a face for that! Now it’s just ‘wait’ time. If I pause then he knows he needs to stretch out that sentence before I will respond.

It’s been going really well and it’s actually pretty adorable and thrilling to hear him expand on his thoughts out loud.

So the other day Kiddo and I went for a drive to run some errands and we were passing through some beautiful countryside, feeling happy and just enjoying the sunshine.  Kiddo was looking relaxed and staring out of the car window when he made this comment out of nowhere:

‘I’m nice.’

I immediately jumped in with an enthusiastic ‘Kiddo !! Your ARE nice!!!’

Kiddo then repeated himself very slowly: ‘Ummm.. I’m nice ….I’m nice … Ummm… ‘.  I knew immediately I had interrupted his train of thought. The wheels were still turning. He does this at times. Repeats something and I can tell he is still searching. Searching for the words, a way to construct the words into a sentence, and a way to match the thoughts in his head to the words that come out of his mouth. It’s labor intensive for him.

So I zipped my lip and waited.

Kiddo: ‘I’m nice to SOME people.’

A long pause from him then slowly… ‘But I am not nice to some other people.’ I waited again. I could just tell he wasn’t finished. Long pause from him again. He was looking out the window then he turned his head toward me and said ‘I need to be nice to the autism.’  My chest tightened up and I felt the tears sting my eyes.

Kiddo continued oblivious to me trying to keep it together next to him.

‘I need to be nice to my autism.’

Then he turned away and looked out the car window again… lost in his thoughts.   He was finished. The conversation was over.

I said quietly: ‘Yes buddy … I know… It’s so true …’

My boy has not talked too much about autism of late since we explained his diagnosis to him a few months ago. This talk in the car was an exception. It was just the tiniest of glimpses for me into my own child’s personal journey towards self acceptance. No mean feat given the many roadblocks he faces on a daily basis.

What a privilege it was that I got to be there, sitting beside him, the one to witness such a moment.

Be nice to the autism. My autism.

I hear you Kiddo. I hear you.

This is Autism

I have been on blogging break recently.  I gave birth to my adorable Baby Girl four months ago.  Then three months ago I moved with the family from Australia (back) to the USA.  Yep! Trust me…. it has been an adjustment.  We are still adjusting. One day at a time.   

Monday-November 11th 2013:

2:58am—Kiddo wakes up and calls out for me to lie next to him.  This has been a pattern for the past week or so.  Sleep is an ongoing struggle for my five year old (almost 6) Kiddo. I get up and go and lie next to him.  My back has been hurting since I gave birth to Baby Girl.  Plus Kiddo’s bed does not have a pillow-top mattress.  Pricing pillow top add-ons is on my ‘list of things to do’.  This  will allow me to lie next to my son in his bed without being in pain.  I am also aware that Hubby is bone-crunchingly tired and I want to try to let him sleep.

3:30am—Kiddo is still awake.  I give him some melatonin (or as Kiddo calls it ‘sleeping medicine’) to try and help him drop back to sleep. Baby Girl wakes up ready to feed.  This ends up taking a while and Kiddo starts calling out for Daddy this time to come and lie next to him.  Which Daddy does. Kiddo has been so anxious lately with all the changes that managing this anxiety has become a priority for us.

4:00am—I finish feeding Baby Girl and then struggle to get back to sleep.  I am worried about Kiddo and school.  The staff at his new school have been great, but Kiddo is pretty stressed out and his behaviour at school communicates this.  We are doing all we can to support him.  He is trying so hard.

5:05am—Kiddo finally falls back to sleep.  Daddy returns to his bed and falls asleep. I go back to sleep.

5:58am—Baby Girl wakes up for the day. She is all smiles! I get up with her and start our morning routine. Coffee is my friend.  Drive-through coffee is awesome too.

starbucks

6:30am—I am on the couch with Baby Girl and the iPhone. I begin researching possible activities for Kiddo to do today.  I am thinking of a family outing into the city.  Always gotta have a plan in this house! A day with no plan is just not good for Kiddo. Or us. Period.  Then Kiddo wakes up and bursts into the lounge room with joy: ‘Hi Mum-It’s me! I am back!’ .  Gorgeous!

7:00am-Kiddo watches TV. When the show is finished he looks out the window, sees the sunshine and exclaims with total excitement: ‘What a day! I am happy today. I feel good.  Sunshine! What a day! No school today.’  I respond to his total enthusiasm with ‘That’s wonderful Kiddo. I am so glad you feel happy today. I feel worried when you are sad and upset.’ Kiddo: ‘I am sorry mummy. I will try again.’ Me: ‘That’s OK Kiddo.  I am proud of you. I know you are trying.’

the sun is shining

Some days lately he is not so happy. There have been many meltdowns.  This boy of mine really does try so hard to ‘manage’ and regulate himself, his emotions, his body and its need for movement and input. This ‘management’ of his body and emotions is not only internal but also external, including contending with noisy, busy, highly verbal environments, bright fluorescent lighting and the general chaos of life and all its demands.  It’s a full time challenge for him….and our family.

8:21—Kiddo sits down for breakfast and starts looking under his chair. Me: ‘What are you doing Kiddo?’ Kiddo: ‘I don’t have a seatbelt’. Me: That’s funny! You don’t need a seatbelt in the house, only in the car.’ I smile at our cute conversation.  These days there are so many cute conversations. I don’t take it for granted. Never ever.

I sit down with Baby Girl on my lap while Kiddo eats his cereal.  I show Kiddo my sore finger.  I seriously have no idea how I hurt it! I ask him what should I do to make my finger feel better. Kiddo: ‘Go and see a doctor.’ Me: ‘I think I might ice it and see if that helps take away the pain.’ Kiddo: ‘Give me a try..Give you a try...(I wait – I know he is searching for the correct word)…Give IT a try.’ (yep-he found the word he wanted.) Word retrieval. Another struggle for Kiddo. Now my finger is numbed with ice I am pain free.

9:08—Hubby is up now.  It’s Veterans Day in the USA and he is home from work. Kiddo says to us at the breakfast table: ‘I feel HAPPY!!’. Me: ‘Why are you happy?’ Kiddo: ‘Because I am happy.’ Me: ‘But why?’. Kiddo: ‘Happy for mum and dad!’ Me and Hubby: ‘Awwww! Thanks Kiddo!’ I see Kiddo looking at Baby Sister…I can see he is searching for his words again…he says slowly: ‘Glad. Glad for Baby Sister.’

baby sister

9:31–Kiddo bounds over to his new ‘Angry Birds’ card game and asks Dad to play with him.  He has just started to play card games and board games this year. He loves it. He loves numbers.  Anything math related-he is in! Bingo and CandyLand are another two favourites. I love playing these games with my son. I feed Kiddo his vitamins while he plays and hand Hubby his coffee.  I put Baby Girl to bed for her morning nap, pack a cold lunch for Kiddo, load Dad and Kiddo into the car for a trip to the Skate Park to ride their scooters, and I crawl into bed for a morning nap. By this time I am hurting. I need sleep.

12pm—Dad and Kiddo come home from the Skate Park.  Hubby is exhausted and crawls into bed for a nap.  I am up with Baby Girl and do some cleaning while Kiddo has downtime playing games on the Ipad.  They are not educational games. Purely downtime…for him and us.  

IMG_1116

1pm—the Ipad dies. It wasn’t plugged into the wall properly.  I help co-regulate Kiddo who is very upset.  I wake up Hubby and we start getting ready to head out again.  All four of us this time.

2pm-4pm—We drive downtown to explore the city.  Kiddo loves it.  We drive around and find a park to visit.  I wait in the car with Baby Girl who is sleeping now and Hubby plays a high energy game of ‘chasey’ and ‘sharks’ with Kiddo and the other kids at the park.  Hubby is so animated I can hear him from down the street!

IMG_1136

5pm—home. We are all tired now.  Kiddo is much less verbal/non-verbal later in the day.  Also he is not responding to anything verbal.  We switch to visual supports about now.  Also his movements are more unpredictable.  Everyone is feeling.. ratty… it’s a challenge to stay calm and its a race to the finishing line (bed time).  

We drop past the shops to grab dinner.  Kiddo plays games on Dad’s I-phone while we wait in the car.  A phone call comes through. Kiddo answers the call and says : ‘I don’t want you to call me. I am trying to do something.  I’ll call you later. Speak soon. Bye-Bye now.’   Too funny! I laugh out loud and congratulate Kiddo for doing an awesome job answering the phone.  He normally just hangs up on whoever calls him when he is playing his games on the Iphone.  He giggles at my laughter.  I cant wait to tell hubby the good news! This is progress is our house!

The ‘night-time routine’ begins: Bath—dinner—Lego—Angry Birds card game (it’s usually TV  but Kiddo is loving his new game so we switch it out)—melatonin—brush teeth—toilet—read book—bed.

7:30pm—Kiddo is upset and crying.  Hubby’s phone died while putting Kiddo to bed. Kiddo calms eventually and is asleep by 8pm. Baby Girl goes to bed at 8pm.

8:00pm–Hubby has a work meeting. I write this blog post.

11:00pm–Bed. Hubby and I talk about the possible 3am wakeup and make a plan for this.  Tomorrow is a school day so we know Kiddo will be feeling anxious.

11:30—Baby Girl wakes up. Time for a feed. Before I know it its midnight.  There are some common themes in our autism day-to-day. Sleep. Communication. Planning.

Please feel free to share the keywords/phrases that form a ‘theme’ in your household…

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!

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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