Scary NDIS made easy - I hope!!!

Some of you may be aware that the NDIS rollout is something I have been preparing for both personally and professional for several years. Because I have had a few people contact me privately, recently, I thought I would post a public post about what I have learnt about the process..... Please note - I am not an expert, I am sharing what I have learnt/been told/experienced. I welcome comments or other experiences to be shared as this is new for ALL of us.....

If you have a child under the age of 7 - STOP READING!!!! Please see my previous post re the ECEI program and link.

For the rest of you - keep reading!!!!

While NDIS will need some form of notification about the "lifelong disability" ie diagnosis and it aint going away, it’s NOT the focus of the support. The support will depend fully on how you or your child (making it general as I am aware some adults with needs are also on this group) can function with daily activities. 

From the NDIA Price list* "there are 3 categories of support purpose aimed at increasing Independence, inclusion and social & economic participation. The 3 areas are: core, capital and capacity building"

Core is a support that assists someone to complete activities of daily living and work towards goals.

Capital is an "investment" such as assistive technology, modifications to vehicles or homes or specialist disability accommodation.

Capacity Building is support that helps build a persons independence.

ALL of the above is to help someone achieve goals. The NDIS have 8 domains they look into:

• Daily living
• Home
• Health and Wellbeing
• Lifelong Learning
• Work (employment)
• Social and community participation
• Relationships
• Choice and Control.

All the above can be found on various websites – including the NDIS price guide.

WHAT DOES THIS ALL MEAN???

If you have been receiving any funding  – they will consider this BUT they need to look at the goals – why were you receiving support? What were the expected outcomes? Where would that fit in all the above???

We have been planning for this for years. My first tip - PLAN PLAN PLAN. 

Link your goals with the above and get documented evidence from professionals to back your needs…. Here are some examples:

Mr C has PICA – see my other posts ;). Basically he doesn’t eat nutritional food and would prefer to eat paper. We have this in a formal diagnosis from a paediatrician. Linking with a dietician and nutritionist has not helped.  We want him to increase his range of food – a goal. One way could be through food therapy or even a group for “picky eaters”. Both of these would fit in capacity building. To follow this up we need meal prep at home help – and this is CORE SUPPORT- it may fall under daily living.

Miss M gets very anxious around a large group of people – but we don’t want her to be socially isolated (Goal – to be actively involved with a social group – "Social and community participation"). So under core supports we will need a "companion" to be with her for outings. Under capacity building - therapy to give her more strategies to deal with the anxiety.

Focus on what the goals are – for me it’s for all three of my kiddies to live independent lives (long term), to be able to form friendships, participant in the community and to have good health and wellbeing. We have many short term measurable goals that fit into these areas – a couple are outlined above.

So - What are your goals???

REPORTS!!!! LOTS OF THEM

The other tip I HIGHLY recommend is for an Occupational Therapist to prepare a “Functionality Report”. Also any other specialists you may have in your team (Speech, counsellors, teachers, daycare etc etc). Send ALL your reports when you “Request Access”. You do not need a specialist nor even a GP to fill in the form if you have all these reports….. Send in current (to show now needs) and any older ones (to show the ongoing needs). 

We focus on 5 areas with these reports that will fit nicely with the NDIS Domains, in fact during a planning meeting these exact question are asked!!!  

Mobility – think not just physical but how emotions/anxiety can impact movement in the community and home

Communication – including written and the ability to read body language. Many only consider the verbal method of communication

Social Interaction – can they form friends, keep friends?

Learning – short term memory issues? Does someone need to be shown the same activity over and over? Need support until they “get it”

Self-management – ability to handle money or, for children, the concept of money. I am not sure but even the ability to "self-manage" emotions may fit in here!!  Start thinking outside the box!!!!

Self Care – bathing, eating, home duties, medications, safety to self (Miss Shy has absolutely no fear of anything! Constant supervision is needed!!!) etc.

And my FINAL TIP – don’t do this alone. Find a friend to support you or better yet an advocate at the planning meeting. Don’t forget to show or refer to the reports again.

I do realise this is a lot to take in. It’s all so new and can be very confusing and frightening.

PS – feel free to share this if you find it helpful and of course questions and comments are welcome!!!

Thank you

Today I had a meeting at the park with Miss Shy and our OT. While completing the paperwork and discussing several issue Mis Shy went off playing. Along comes another family including a young girl around her age. They start playing and the girl calls her by names. Apparently they know each other from kindy. 

The lovely mother and little girl, and baby sibling, graciously include Shy in their play, while I keep a watchful eye out. A few time I called out to play gentle with the baby and the mother replied "it's ok". 

When they went to leave the little girl yelled out goodbye and the mother told her that was not how to say goodbye to Shy. The girl walked over to Shy, got her attention and waved and said goodbye. 

Now THAT is inclusion and awareness right there!!! How totally awesome!! I thank ed the mum for being so awesome!! She was not only aware of Shys differences but also teaching her child different is ok. To accept and work with these differences!! 

Shy can't tell me the little girls name. She can't even respond when questioned do you know her from kindy? And yet this little girl and her mum ABSOLUTELY made my Christmas. 

Thank you stranger mum!!!! 

Birthdays

Sharing this because you guys will get this. 

Last week my boy "Mr C" turned 8 and we held his first ever "friend" birthday party. In past it's only been family and close friends. This year he invited his whole class and other friends. 

We did a minecraft theme (as you can see In the photos) and he had a ball. About 20 children including classmates, after school care friends and cousins joined us. 

He loved the food! He read all the labels, giggled at the grape "slimeballs" and it was a great afternoon. After playing for a while he came to me and said "mum - what can I eat??" And yes I had his "food" tucked away. 

My husband said - all this and not one thing he would eat. I knew it! I was prepared! No one even noticed he didn't like the food. But the kids all thought it was great! 

Inclusion = preparedness.

Proud of my little man and all his friends.

Oh - also we had the hind sight not to open presents at the party. Asd kids are not known for tack. And sure enough one present was not to his liking and he made a rude comment. I could only imagine the pain of the gift giver and parent if they heard 😲. 

Roast Beef and Gravy and potty training.

My Mum loves to tell this story of my stubbornness as a child. I was recovering from an operation and still had the "drip" in. After a couple of days the nurses were very concerned that I still had not eaten and they could not, according to policy at the time, remove the drip until I had eaten. Mum, knowing nursing and her daughter, spoke to the head nurse about the situation. "Remove the drip" my mother ordered. So they did and I sat up and ate a full meal of roast beef, vegetables and gravy. You see, mum understood... I couldn't eat while I was sick and I must have been ill as I had a drip!!!!

 

It's all about perception, how a child's mind works and thinking outside the "norms". As adults we tend to loose this ability to think outside the box. One of the blessings of living with children on the spectrum is the constant reminder that not all is as it seems, that we are all unique in our methods and thinking processes.

So let's move forward a few years .... And to potty training....  "Huge jump of topic"  I hear you say.... Well get ready for poos and wees coz here it comes!!!!

Mr C was very difficult to toilet train. We started trying at about 18 months since he loved to take his nappy off as much as possible, but wouldn't use a potty or toilet - no matter what aids we had. And we had a few! Various types of potties, seats, steps and even a ladder! However I refused to cave to the musical throne!!! It made no difference! He would go anywhere outside for both P's and W's. And would proudly show us where!!! We tried reward systems for using the toilet and wearing "jockies", which BTW didn't work, until they were forced on. It was around this time he started with the OT who introduced the idea that the actual "feel" of underwear could be part of the problem and also the fear of falling into the toilet. We persevered and eventually got there. Using the toilet was second choice to going outside or a corner of his room (YUCK!!!! It took us forever to get him to stop this one!!!!). I can't recall how old he was before we had no day wets/messes but thanks to this blog I can pin a date on dry nights! He was over 5 years old and I thought we would forever have nappies!!!

So moving on current times. Miss Shy is a totally different story. I decided not to push the issue. I am learning from experience that these children will do what they need to do when THEY are ready! We have often offered her potty or toilet, and of course huge rewards if actually used, but although she would sit for a while, we would not often find end results for the efforts. And we have not pushed AT ALL!!! When she started ECDP (age 3 years) she became friends with another young girl, and, as expected, she started to copy. The school asked that we encourage this at home. DUH. We even packed "big girl panties" rather than nappies or pull ups, but we still had lots of puddles to clean. She would demand a nappy and immediately poo!!! Once or twice she took her nappy off to go herself, but very it was rare. 

 

Still I was determine not to push. Encourage and offer opportunities definitely. But no pressure. Moving to Kindy next year, toileting has been a topic of discussion as it is strongly preferred children be trained before they start, but STILL I am determined not to push this child! Yes I am as stubborn as she is!!!

So bring us to Saturday lunch time  (19 December 2015).... Little Miss "I Can Do Anything I Want" walks out of her room with big girl panties on. I told her "fine - but toilet for wee wees". Off she goes, all by herself, to the toilet. I am ok with this.... Let's see what happens.... Constant reminders.... Constant use! I am impressed!!! After a few hours she is fussing and Mr C informs she has a puddle.... Grrrrrr. I thought we had a winning streak. I move her to the bathroom for clean up and she points and shrieks to inform me something was wrong with toilet. Thanks for attempting to flush a bandaid Mr C!!!!! After clean up we do battle to get a nappy back on and nap time. 

After nap time I check her and sure enough.... No nappy and back into big girl panties. I need a padlock on her drawers. We get through the afternoon and evening with no issues. Bed time and again the determination of my "roast beef and veggies" attitude stands out.... No nappy. Fine I thought. I would slip in and put one on her while she sleeps. Ha!! Guess who fell asleep and forgot!!!! But a dry bed in the morning!!! What??

So in 48 hours since - no or little incidences. Always reminding, late night toilet trips (if I remember) and we are done! No nappies since the 19th of December 2015!!!

                                          

And Yes - I am counting the hours!!!

So my point here.... Kids need to do things when they are ready. I read all the articles and advice. I tried everything with Mr C. I had the charts, rewards etc etc. Nothing really work and all of us ended up frustrated. With little Miss S-bear we relaxed. No time frames - no stress. Sometimes it's about thinking outside the box and not sticking to the expectations of others and society.... Once she was ready she did it herself. A bit like me eating Roast beef and Gravy 😉. 

UPDATE: almost a month has gone by!!! The occasional mishaps but no wet beds and no nappies!!! We are heading away for a few days so long trips and new place to stay could be interesting!! Wish us luck!!!! 

Tents, tantrums and tempers

Here we are again. Miss M convinced me she needed a tent set up in her room to sleep in. She currently sleeps on the bottom bunk of a bed, with blankets as side curtains, creating a cave. I am guessing it's a sensory thing. And I am ok with it. But a tent??? Of course they just happen to be on special for $15 so thought why not....

WHY NOT???? ARE YOU INSANE??? (Yells the voice in my head)

To set the tent up we first have to measure, and of course move, most of the bedroom. But before we can do that we need to be able to walk into the room. This involves removing of a basket of dirty clothes that were on the floor, 2 bags of rubbish and finding new homes for the multitude of toys (that she doesn't even play with - so where did THEY come from??). 

Once half the room has been cleared away we have to start measuring. The result.... Yep -  Furniture needs to be moved. Start moving furniture to find more clothes, rubbish and toys. 

Miss M during all this time decided after doing her "bit" that she needed to sit and plan. And sit and plan. And start asking what's for dinner. And why can't the tent fit there? And when are the cats coming in? And so on... You get the picture....

So let me digress.... I was away from home last week and thought heaps about the way I handle things and what changes I wanted to implement when I got home. Including my patience level with this child that I love so dearly and let down so often by loosing my temper. Tonight..... It all went out the window. 

I totally lost it. 

To cool off, as I usually do - I turned to Facebook...

"So as some of you are aware I was diagnosed with masked depression a year or so ago. My question is this.... My depression was manifested in the lack of ability to control certain emotions. Including anger. If this is all directed at a particular circumstance or environment should I be medicated? Or should I instead work on my reactions? Or should I remove the situation? I stopped medications believing I didn't need but this evening I have once again lost control......"

It was followed by heaps of suggestions and offers to take the "situation" away (thank you). Heaps of supportive messages and comments, I am feeling so blessed that so many care enough to reach out. 

Still not sure of the answer to these questions. But I will book an appointment with my Dr. 

So the night ended with the room half cleared, most of the rubbish out, two loads of washing to do, AND NO TENT. 

UPDATE: fast forward 24 hrs and a brilliant, productive day at work, I felt up to the challenge of THE ROOM. It is done!!! Tent is in!!!! Of course it's much smaller than she hoped... But tonight she gets to sleep in it ..... 

Night all!!! 

A day to remember

Today I had the opportunity to look at the huge steps forward my little man has made..... TWICE.... As as a proud mummy I had to share...

Most of you who know us, or follow my Facebook or blog, know how much Mr C loves his routine. It's a very typical thing with ASD. He also has passions he can not live without. One if these passions is the Golden Arches of McDonalds...

Today I decided to spend the afternoon with my Mum and kids, go to the park, do a bit of shopping and generally get some quality time in. With kids fed lunch, we headed of to the park with a detour through McD's for a takeout coffee and food for Miss M since there was nothing "suitable" at home.... 

Now a trip to the Big M normally means a "nugget happy box" with a toy and "happy milk" for Mr C. This meal is one of the few foods he eats, so unfortunately it is a regular occurrence. Today, however, once we picked up the coffee and other order Miss M asked where Mr C's box was. 

He piped up "I don't need one! Mummy cooked my hashes before we left home!"  

Miss M then asked "what about a happy milk??" 

Mr C replied "I have my red juice!!!" 

WOW!!! I was stunned. I actually expected a meltdown from him without his bits - but instead he had an explanation for Miss M!!! I was shocked!!! And so proud!!!!

So off to the park we go. A few other families were around which normally means I have to keep an eye on Mr C for rough play, particularly if the other kids didn't want this kid trying to push into their fun. After hanging out with the other boys for about 5 minutes he spotted a young child playing ball with his father. Mr C wondered over and started playing so nicely, and not bossy, sharing and just being the gentle soul he truly is. I headed over to thank the gentleman for allowing Mr C to join into the obvious father - son time and this complete stranger said "it's ok. He is such a lovely boy".... Ummmm what???? These are not normally words I hear with regards to my son!!! Yes I know he is, he has his moments, but I normally have to sit on the edge of the seat, ready to protect unprepared children or step-in with an explain action for parents. 

We left the park and headed to the memorial park to pay our respects. I sat with the kids and had a chat about the solders, their great grandpa and why ANZAC Day is a day we remember before heading to the shops. Miss M attended the dawn ceremony with Daddy but I missed the ceremonies this year, and most years, as it's too much for the younger ones. Mr C was very knowledgable on the subject, obviously ANZAC has been well discussed at school, and he had seen the photo of Grandpa Wallis in his soldier portrait. 

Then off to the shops. We ran into some friends who mentioned Mr C received an award at school the previous day. A funny story... The other award winners were given the opportunity to hand their awards to their mummies before returning to their seats. Mr C stated he did not have a mummy.....  A few giggles from parents. I wish I could have been there for him. :( I checked his award tonight in his bag - for most improved kindness. Yes - a huge improvement!!! 

Needless to say he received plenty of extra cuddles tonight. 

Sometimes we get so caught up in the challenges that we forget to celebrate the achievements. Today has reminded me....

 

Not that the day has been all sunshine and rainbows, but it has been a day to remember. 

Xoxo 

So tired :(

I am done. Miss M is beyond out of control. If you don't witness it, you would not believe it. Settle in... It's a long one.....

Firstly - This child is not wanting for anything. 

An example.... Pillows. I know it's a stupid thing, but does she have 2, or even 3???? I honesty have no idea how many she has stashed. About 9. And at the first opportunity she will take any off other people's beds. We are all down to one pillow (if it's a good day) as she has them ALL!!! And it's a fight to get them back. 

Let's talk electronics. She has an iPad mini. She can't go anywhere without it. She also has been begging for an iPod. Since I have upgraded my iPhone I told her if she does her chores she can have it to use as an iPod (no sim). 2 months and I still fight daily with her to do the simplest of chores ie feed her cats. She also "claimed" my mini computer/tablet. Not that she uses it much as she has broken the charger and I refuse to give her another. I do charge it once a week and she will use it til the battery runs out. NOW she want an iPad so she has a larger screen. Like HELL!!!! Even came up with a plan of a reward chart to "earn" it. HA!!! I think not!!!!!!

Ok I can hear you thinking.... These are all "things", what about giving her time, love and attention....  Let's talk about this!!!!

The only way to describe it is an attention sucker..... I used to take her out, just her and I, for a girls afternoon tea. You know - sit, chat, milkshake etc. I attempted to do this once a week with her for about an hour or so. She had my full attention. I was sick one planned time and explained to her that we would have to miss it that week. WELL I was the worse mum ever. Accused of not loving her, breaking my promises, being a bitch, never giving her time etc etc etc. so that was that. I stopped doing it. 

Any quality time we spend together is not enough. If I spend an hour with her she wants 2. 

These school holidays I planned to set up a box of activities for the kids that we could do together. I purchased canvases, paints, new brushes, craft bits, glue, specialty paper etc etc etc. She helped choose everything. Once we got home we set up paints in pallets, tables outdoors (table and chairs for each child so no sharing had to be involved!!!). She started a "project" while we were all sitting quietly but "messed it up", so started another. We cleaned up everything after about 15 mins. That's how long the interest held. The next day, while I was at work, she started a new project on every item. No cleaning up. Keep in mind the 2 younger children love art, but without supervision tend to get into mischief. I now have painted tables, walls, etc etc, and after asking her to clean up/pick up I am still finding paint brushes in the yard!!! And why does she have to do the clean up?? Oh I am so unfair... Not asking the other children. It's simple. She got it all out and walked away....

And now - it's all packed away again. 

So common are the following phrases in our home....

- Did you get....out??? Then put it away!!!

- Is this where your dirty clothes go?? Then put them in the basket!

- Who has the pencils out? Well now miss S has drawn on the walls... Pick them up!!!

- Where did you put the TV remote??? Oh - it wasn't you??? How come the TV is on your channel???

- Who left the half cup of drink on the table? Well now it's tipped all over the clean, folded clothes you haven't put away!

The list goes on and on. 

And then it's the whole "please do...." And the NO replies we get. What child says no to their parents??? 

Consequences of actions (or lack of actions..)

Time outs??? Nope. Doesn't work. A time out will cause damaged walls, doors from slamming, and actually put the other children in harms way....

Removing her privileges ie iPad..... As above.... Plus the barrage of no one loves me etc. Or the cancellation of an outing.... "You never keep your promises" etc. she is awesome at laying on the guilt trip. 

So reward charts - Yep tried them. When she was about 2 1/2 she had a sticker chart. Once she had 10 stars she could choose a prize. Worked great until she started bargaining for stars.... "I will clean my room for 3 stars mummy or I won't do it". "One star to clean your room or a star will be taken off!" .... After a month of not achieving a single chart of stars, I gave up. It worked for about 2 months. 

Routine charts? Ha. Tried it. Nope. 

Keep in mind this is a 10 year old child and this has been going on for approx 8 years. Before the other children came along - so is this just sibling rivalry??? Oh it goes so much deeper. 

Mr C was showing me some of his movies he made (he loves filming himself) and one showed exactly Miss M's behaviour towards him. Happily filming himself she walked up and put a can of cat food in his face. Knowing his sensitivity to smells.... Really??? So yes he reacted. Yelled at her. Called out to mum who intervened. Once mum left she proceeded to kick him - again he reacted. The she blamed him for the beat down she received from him. Of course mum played favourites and told her off!!!! All on video. Can't wait to show that to the psychologist!!

The lack of respect for her belongings and others drives me insane!!! I will often find a treasured item ruined because she got it out then walked away leaving it for the other children. She was given an amazing makeup kit for Christmas this year and we made a "spot" to hide it from her baby sister who also loves the makeup. The lipsticks lasted 2 days until it was left out.  Poor Miss S suffered the consequences... the whole "I hate having a sister/brother" phrase comes out quite often. Plus the "wish they would die"....

Another year (she was about 4) Santa brought her a leapster. This was before the iPad. I was constantly checking where she left it. Asking her to pick it up, put it away, don't take it outside etc etc. When we found it one day (after it rained) in the back yard, she was told she would not be getting another. Her response... "Well you didn't pay for it! Santa gave it to me!!"  That was the last year Santa gave her an expensive gift. ;) 

Perhaps I made this bed. Perhaps this is payback for me being a brat of a kid. Perhaps I spoilt her. 

BUT what really breaks my heart is the fact I KNOW this is not HER!!!! 

It is not ALL bad. When she chooses she can be amazing!!! I witness it here at home, when SHE wants. I hear it from places she visits - how polite and gentle she is. From the school - she is an angel. 

Yes we are seeking professional assistance to work out why this is happening. Paediatrician says ODD. Medication did not help. Just starting with a new psychologist... I hope we find answers. I pray there is a better way. 

No wonder why mummy is stressed, frustrated, often angry, depressed and ready to give up....