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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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…

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!

Taking a Leap of Faith

This week I did something I don’t normally do.  I attended a community presentation/discussion forum about the Australian legislation relating to a National Disability Insurance Scheme (NDIS).  Basically this is about a nationalised system of funding to provide care, supports and services to people with disability across the country.  To date the disability ‘system’ in this nation is described by our own Prime Minister as ‘piecemeal, fragmented and underfunded.’  I believe a significant change is a good thing, and I share the PM’s view about the state of disability in this nation.   I did however need someone to unpack the fine print in the NDIS for me.

Well, attending the forum did this.  The presenters were from DDC and PWDWA (see links below for info on these organisations) and did a really good job at ‘unpacking’ and opening up key areas for discussion, as well as keeping the whole afternoon ‘moving’ along at a nice pace.  Key areas discussed included criteria for eligibility, early intervention, and the nature of the so-called ‘Agency’ appointed to oversee  what has been termed ‘care plans’ (basically what support, services and funding will be allocated for each person eligible) .  There was discussion about the principles relating to these ‘care plans’, whether the role of advocacy needed to be included in the legislation, and what constitutes ‘reasonable and necessary supports’ for people with disability.  See these links for an outline on the key parts of the legislation: http://ddc.org.au/news-ndis/ and http://www.pwdwa.org/.

From the comments and discussions it was evident where people’s passions and concerns lay…There were those with disabilities themselves, some had a special interest in advocating for adults with an intellectual disability, others wanted to advocate for the needs of their own children after they had passed away.  I (one of the younger ones in attendance!) wanted to know about early intervention, possible funding for those children ‘at risk’ of autism, and how the NDIS and the Education sector would interface.  On this point I got ‘fired up’ when outlining my concerns…don’t even get me started…it’s seriously like winding up a jack in the box!

The presenter did a good  job with all of us ‘fired up and vocal ones’ and I was told that in relation to Education and the NDIS the ‘interface’ was not clear…but she said she would follow it up and let me know on this point.

One small remark made by the presenter stuck with me more than any other…it was that ‘we are putting a lot of faith in this legislation.’

Then I had a flashback to my days as an undergraduate studying politics at University.  The Founding Fathers of the Australian Constitution intended for that document to reflect their desire to keep the power with the States and keep a check on having a powerful centralised government.  Would those men ever be shocked now at how the Australian Constitution has been interpreted by the High Court over the past two centuries.  This, along with a number of other factors, has seen the power shift over time from the states to what is now a powerful centralised federal government.

I wonder what history will reveal about this disability legislation? Will successive governments remain true to the intentions of giving people with disability the support and care they need to live their lives …or will there be cost cutting, scrimping during tough economic times, hand balling, exclusions and excuses.   Ultimately, will people with disability and their loved ones be left better off or worse off?   In my cynical moments I wonder how Australia’s care and provision for people with disability could honestly get any worse. I get the feeling with this NDIS legislation that the ‘train has left the station’.

Maybe our job now is to take a leap of faith .  Maybe only the passing of the decades will reveal if Australia remains true to the original intentions of the legislation.  How will the High Court rule when the legislation is challenged? How will the NDIS ‘Agency’ and ‘CEO’ outlined within the legislation decide what each person needs?  Will people with disability and their loved ones truly experience a better quality of life? Who will speak for and advocate for the many, many people with disabilities who literally cannot speak for themselves?   Who will decide what is in their best interests?  I’m trusting that agencies like DDC and PWDWA and the countless others will do their best work and ensure that good outcomes come from this legislation, from this government and from the governments to come.

A complete roll out of the scheme is not scheduled until 2018.  The ‘little baby in mummy’s tummy’ (as my son says!) will be getting ready for school in 2018.  My first born will be on the cusp of high school.  Its a little while off but in this NDIS legislation lies the hope for a better future for ALL  Australians.  In it lies the hope of a global disability community…one that looks to prosperous, developed counties like Australia to give people their basic human rights and be responsible on the world stage.

I’m hopeful that things will BE better because I KNOW this nation can DO better…

And on that note…I hope you all had (or are still having) a Happy Australia Day folks!

Kangaroo with flag pic

9 Ideas for the School Holidays!

1. I aim to get down to Leighton Beach in Fremantle on the 19th January for the ‘Let’s Go Surfing Day’.  ‘Disabled Surfers WA’ takes people of all age ranges and different disabilities out onto the surf as well as providing fun activities on the beach also.  If you miss the January date there are also events in Feb and March.

If you or your child does not have a disability you may like to volunteer! The organisation is looking for volunteers to help set up, cook sausages and help out generally on the day.  It could be a fun morning of swimming for your kids plus they may love the added experience of helping out others in this way.

http://disabledsurfers.org/wa/perth-branch/

For those living on the East Coast of Australia or on holidays to Sydney check out the  ‘Try Sail Days’ .  There are events throughout January and the events are run by volunteers at the not for profit organisation ‘Sailors with disAbilities’.

http://www.sailorswithdisabilities.com/calendar

For my USA readers I would recommend ‘Heart of Sailing’.  I have been on this free sailing boat ride with my family and it was one of the highlights of our time living in San Diego.  It is a not –for-profit that runs free sailing events catering for children and families with developmental disabilities.

http://www.heartofsailing.org/default.asp

2. My next pick for the summer is Scitech WA.  If you get there as doors are opening the crowds may be a bit smaller!  If I think it will be too crowded I try and take another adult with me just to be on the safe side. The good thing about Scitech is that it’s indoors and has air-con!  My son adores the ‘hands on experience’, loves the puppet shows and the Planetarium show.  There are also ‘special days’ on during the summer-I think the Marine Science Open Day on Jan 19 (for 7 to 12 years) looks like fun.  I have also found the staff at Scitech to be helpful, patient, and understanding in relation to my son.  After a few bad experiences at the hands of staff at other venues in WA, it is refreshing to know that when I need support from the staff at Scitech they come through for me (and my son) every time. I did hear on the grapevine that the staff at Scitech had done some Autism Training … and it shows!

http://www.scitech.org.au

3. Craft. My son loves dot-to-dot sheets and mazes.  He also enjoys work books with alphabet and maths activities (a special interest for him).  I buy the $5 workbooks from K-Mart and we have fun for hours!  Also drawing faces, naming them, and adding some ‘googly’ eyes amuses us both no end.  A packet of googly eyes cost about $2.  My mummy mate of mine gave me this other awesome craft idea…its clear contact that been taped to the window sticky side facing the kids and then ‘decorated’.  She assures me it kept her kids happy for ages.  I can’t wait to try it!

jan 2013 iphone 064

4. Fishing.  A friend invited us to meet her and her family at the river for some fishing.  Fortunately she had all the equipment.  I have never taken my son fishing before and I really didn’t think he would be that interested in it.  I was wrong.  He loved taking turns with my friends kids and was intrigued by the whole process of baiting and casting.  Plus the kids all caught a few ‘blowies’ each which was enough to keep them engaged and then the blowies got thrown back in the water by the adults.  We also took a frisbee down to throw around and with a bit of a picnic added in, it was a really lovely activity. Fishing is on the list of things to try again.  Sometimes it pays off to branch out and try new things-you and your child/ren may find a new passion!

5. For a more low-key day when it’s too hot to be outside we go to see a kids movie, and combine it with a freshly squeezed juice from a juice bar, lunch in the food court and a little wander through the shops.  My son lasts about one hour in a movie, sometimes a bit longer.  But he knows the little routine now of juice, movie, shops, wander and it is quite nice and he can walk next to me pretty well.  It has taken some practise to get to this point as he is really not a fan of big shopping centres.  I am just careful not to push it by trying to go shopping for too many things myself when he is with me.  I remain sensitive to ‘where he is at’ and if he is unable to walk next to me, or is not coping with the crowds and noise we bail.  Most times however this activity can fill a hot morning quite nicely.

6. For keeping your kids cool (when the pool and the beach feels like work)….you just need a hose, a bucket and a trampoline!  Maybe add it some water balloons too. Summer Gold!

Summer

Summer

7. Find a school holiday program.  Every mum needs a break…summer holidays are long!  Whether it’s a local vacation care or day care-if you child has a diagnosis they may be eligible for a support worker funded through Kids Australia (NOR) or Communicare (SOR).  If you are having trouble finding an appropriate centre call the Children’s Services Officer at your local council, they will be able to advise you about what is available.  If you are having trouble paying for your child to go to day care or vacation care call your LAC (if you have one) or call Carelink on 1800 052 222 and discuss (advocate for) your needs with them.  If you are looking for a special needs school holiday program then contact Activ-Beckenham (SOR), Friends of Autism (NOR), Kalparrin at PMH or Community Vision (NOR) for different programs that they run during school holidays. Even if you can’t get into something for January-if you book right now…you may be glad you did come Easter!

http://www.communities.wa.gov.au/childrenandfamilies/childcare/Pages/ChildrensServicesOfficers.aspx

8. If you are looking for a fun holiday events for siblings of special needs kids then Kalparrin also runs one day events that cater for siblings and are funded by Disability Services Commission.

http://www.kalparrin.org.au/

9. Check out the Kids Guide Perth for free stuff to do. Plus the Nature Play WA website is pretty great too-some lots of free stuff to do-some may just need to wait for the cooler months though.

http://www.kidsguideperth.com.au/article/free-school-holiday-activities-perth-2/

http://www.natureplaywa.org.au/

With only 4 weeks left until school goes back- I hope these ideas are helpful.  Enjoy your summer.

Gradual Exposure

I am not sure what the stat’s are on this one, but it could be fair to say that most parents of young children have experienced at some point the ‘shopping centre meltdown’. You know…the one where your child tantrums and where everybody looks at you, and for a moment you are THAT parent. The flustered, apologetic, red-faced, and exasperated one.

Relate to that? Or even observed that?

Except in my picture the screaming was louder, the child was inconsolable, and the intensity of the meltdown seemed just that little bit more intense. Also this didn’t just happen on an ‘off day’ for my young child, it was every time. By the time my son was diagnosed at one and a half years of age with autism I had already given up on going to the shopping centre. It was just impossible. I did not know why this was happening and I did not know what to do…apart from just doing the shopping online.

Really the meltdowns were just the tip of the iceberg. There were very real safety concerns with my son running off or bolting, my son struggled to sit still and wait for even 10 seconds, and his lack of responsiveness to my verbal instructions rounded out some of the struggles we faced just leaving the house, let along going to a shopping centre.

When the wonderful therapist Sarah stepped into my universe just before my son’s 2nd birthday, I received the education I so desperately needed. She helped me to understand the behaviours displayed by my son in these new, unfamiliar and often chaotic environments that served to put my son into complete sensory overload. Sarah helped me to see things though his eyes – and I got it. So a strategy was adopted to address ‘Community Outings’, the term now used to describe going to the shops or anywhere in public. It has helped get us to where we are today.

It can be summed up to two words: ‘Gradual Exposure.’

We (Sarah and I) started with a walk (Kiddo in stroller) to the bank-a small, calm and quiet place. It was baby steps. First I asked the bank manager if we could ‘practise’ being in the bank. I just said I wanted to get my son used to it. She said that would be fine and so we began. We would literally walk in the front door, through the bank and then out the back door. We did not stop at all.

I did this once a week with Sarah and then a couple more times during the week with just me and Kiddo. It became our little ‘ritual’, a routine of walking to the bank. Then I ‘extended’ the trip to walking in, sitting down on a chair for 30 seconds and then walking out the back door with him. As soon as I saw my son start to ‘twitch’ a little I would get up and go. Slowly this became a few minutes…and then a good 5 minutes …until probably after about four months my son could sit in his stroller in the bank for up to 10 minutes and I was happy with that. I made sure I praised him every time he made even the smallest progress.

At 10 minutes I felt we had reached a happy ‘age appropriate’ time and I was actually able to go to the bank and do some banking. Kiddo and I then moved on to the coffee shop, the corner store, the shopping centre…then church…then birthday parties…and road trips. These outings are now in the more ‘do-able’ zone as opposed to the ‘too hard zone’ . I still always have to keep ‘age appropriate’ expectations in mind, consider which accommodations may need to be made and what supports to put in place, and sometimes Kiddo does just have a ‘bad day’ and we bail and that’s OK too.

Little by little over the years our son’s tolerance and ability to cope with being in the community has increased, and in certain new settings and scenarios he can thrive. Last weekend we went on a road trip down south and went canoeing as a family. It was magical and Kiddo just loved it!

The gradual exposure strategy has been applied to other things like feeding, toilet training, going to the doctor etc. We are currently working on visiting other people’s houses and actually sitting down there to eat a meal. It’s not happening consistently right now…but as we keep presenting our son with the opportunities and the supports needed I know he will be able to do this too one day.

This community outings project is one journey we are in for the long haul…we’ve got time…