Awesome Day.....

Again - another facebook post from 16 September 2014

Well I must say I have a pretty good couple of days.... 

After attending a work conference last week, I decided to "get professional" at work - not that the work ethic was lacking but my "appearance" needed some work . 

So Monday I turned up with new hair do, makeup and some bling... and yes it got noticed!!! I was asked if I had a special meeting or something on... as I looked good 

Today - from another person I was asked if I had changed my glasses or something as I looked different - and great...

Thank you ladies    - made my day 

Then to top it off I dropped by late to a networking meeting that I had not attended for over 2 years and it felt like coming home 

Yep - today I am AWESOME!!!

Not normal

My Post from Facebook September 2.....


Well apparently so much in my life is not "normal". 

It is not normal to get uncontrollably angry when my household relies on me for EVERYTHING!!! It is not normal to yell at the 9 yr old who looses her bath towel EVERY bloody night!!!! It is not normal to want things put away in their homes ie dirty clothes in a dirty clothes basket and to scream my expectation to the people involved. It is not normal to be upset with work changes, new systems and policies. It is not normal to hide from the world when I just don't feel up to facing anyone. It is not normal feel out of control and go into panic mode when plans don't go as planned.

It is not normal to feel so overwhelmed that it is a chore just to get out of bed. Its not normal to be soooo tired after working all day that take out or frozen reheated seems like the only option for dinner. It's not normal to have memories - just fleeting reminders of what is lost - that causes one to brake down into uncontrollable sobs in the darkness of the night. Its not normal to have so much going through the mind that sifting out appropriate thoughts at the right time can be virtually impossible. Its not normal that if I am not in total control of a situation I am socially awkward and totally withdrawn - unable to interact socially.

Many of you may read this and say "what the???". Off comes the mask. Reality behind the keyboard....

Yes the Mask has served me well at times. So much easier to hide than face the reality..... I have been diagnosed with "Masked Depression". This form of depression is caused by a chemical imbalance in my mind and has been masked behind my anger and obsessions.

I am sharing this because once again life has sent me a curveball, and a new journey begins. No more mask.... And I do want to believe that I am surrounded by supportive people who can assist me in this journey...... And if I have learnt anything over the past few months it is that openness is a new beginning....

Thanks for listening....

Sleeping.... Not there yet.....

Another bright idea that didn't quite work out.... 

Since we have early appointments at Toowoomba in the morn I thought I would treat mum, myself and kids to a motel and not have to get up at 5 am!  Yeah, well, after musical beds for the past 2 hours, the kids are still not asleep!!!!!!

One needs total darkness, another light on and be super close ie in bed with an adult because it's a strange place, another a room to herself or just wants to play with whomever is close..... And only 2 rooms! Work the bed planning out. Just not happening. 

The thoughts and plans for a coastal family holiday at the end of the year are fast becoming pipe dreams. No way we could do this unless we have a three to four bedroom unit for this mob! Such a shame too because for the first time in about 3 years we actually thought we had enough strategies in place to manage it.....

Sometimes it's the simplest things (like sleeping arrangements) that upset the apple cart. The joys of living with ASD & ODD...... In the meantime while the coastal holiday is moving further away in thoughts, the current dream is for these kids to go to sleep!!! 

Good ole ASD.....

With intervention, awareness, understanding and strategies; We have been travelling ok.  And then BAM! The old ASD rears it's ugly head. 

A few weeks ago Mr C gave himself a very nasty finger cut while attempting to separate two Lego pieces. As with most wounds of Mr Cs, the band aids did the trick with fixing. 

One major issue since has been bathing. When he has a wound, with a band aid, it must not get wet. So dutiful mummy has done her best to wash the hand and fingers around the 3-5 band aids. Once I did manage to remove one soak in "magic healing water" (salty), but only once. 

Tonight, I fought to remove the band aids to check the healing. I have been doing this every few days, and it has healed quite nicely. I don't think it will even scar.....

But here comes ASD. 

The injury did cause him a lot of pain. And he has since become very reliant on the band aids. I had to physically force and hold him in the bath tonight (and give the hand a good wash...) while he had a melt down. The only comfort was the return of the band aids. 

Huge sigh....

How the hell do we get around this one????? 

What can you do??? Autism Awareness 2014

Recently I was reminded of an incident that occurred at our local grocery store, about 3 years ago. Mr C was doing his usual tricks. Demanding and in total meltdown mode. I was giving up. In tears a woman came to me, with an understanding, sympathetic, non judgemental attitude and sat with me so I could out pour my woes. 

"I don't know what to do"

"I can't keep going"

"He is so out of control"

Did she have the answers? No. Of course not! This was before Mr C was diagnosed and before we were educated about the sensory over load. But the fact that she listened, instead of the stares and groans and eye rolling helped me get through that day. 

Some of you may have read my last years Autism awareness post, where I outlined so many issues we faced and are still facing, and will forever face with Mr C. I am not going to repeat the story. You can read about it on my blog. I could write pages of the things we have learnt over the past 22 months... But again - you can read my blog. What I want to share this year is how you can make a difference to a family that live with ASD. 

The below list is things I have noticed, lived or discussed with other mums, and this is not a cry for assistance for me.....

Before you start reading the rest of this post/blog I am going to ask you something. Please don't judge!!! These are my personal opinions and what we were or are living with. It's hard to ask for help, and many won't!!! Some are traveling fine with issues on this list, and have support already (please forgive me and don't be offended) but others are struggling. And if you can think if anything I have missed.... Please let me know to include or comment!!!

Meals. Sounds silly I know, but when you live with the constant, ongoing, on your toes to make sure everything runs smooth, you get exhausted!! Cooking for some can be another chore you find difficult to face. Even more so if the kids have special or difficult feeding issues. I personally often forgo cooking for myself and just do what the kids require. Exhaustion. It's cruel. 

Shopping. Due to all the sensory issues, ASD kids are very difficult to take shopping. So if you have time - offer to take the shopping list with you on your next shop. Or pick up a few basics before you visit. Even offer to go with!! So when the child begins to meltdown, mum can deal and the shopping can continue!!! 

Housework. Even if it's just doing the dishes, taking out the trash or folding the washing while you visit. Perhaps weed a garden or organise a mowing service. 

Kids living with ASD may have siblings. It's tough on them. Really tough. They miss out on so much. While parents need a break, so do these other kids!!! Offer to take them to the park, a sleep over, a movie or out for an ice cream!!! It may give mum a break to focus on other things for an hour or two. 

Social inclusion. It is hard sometimes taking kids out to new or public places. Going to a friends place sometimes is simply a nightmare!!! Will he have a meltdown and destroy something? is my usual immediate reaction!!! The other popular one in this house is "can he escape???"  

If we do go somewhere different we have to pack food (special needs), sensory items (in case he gets overwhelmed) and his safety blanket (in case he does not have a quiet place to go to calm down). So yeah - it's easier to just make up some lame excuse not to go! Call in a sitter??? Lol. Very few sitters can be prepared for what they are about to face, and since the almighty "routine" is upset you can expect trouble!!! It takes courage to leave your kid with a new someone and heaps of preparation. So how can you socially include the family?? Little steps. Understanding. Find out any special needs. One time We went to a new place and when we arrived I was shown a special quiet spot just for Mr C!!! Awesome!!! Made our visit so much easier! The alternative ..... Expect a "one sided" visit relationship. :) My friends are always welcome but I seldom visit them. :(

Be aware and be educated - but don't push your new found knowledge or the "latest cure" on to the family. Our kids are all individuals just like any other kid. What works with one may not work with another. I think it's great when my friends share information with me - it shows they took the time to find out more, but often the content is irrelevant. One example is our Mr C does not travel well, including excessive rocking. A family member casually mentioned an idea from her OT friend that giving him a button to play with in the car might assist.... <big sigh> He would eat it and then we would have choking to include on the list of traveling problems. But hey.... At least they had been "chatting" with a professional about the issues :). 

The BEST form of support is finding a local support group and get them there!!!! These people experience it, live with it and welcome sharing and learning from others living the life.

As one amazing person commented "don't ask if everything is ok.... Ask what you can do to help". 

Be Autism Aware!!!!

Ps. Yes I stole the photos from various Facebook groups/pages. Most have the links on them... Check them out!!! 

Go Blue 2014

Tomorrow is April 2^nd and is recognised worldwide as “Autism Awareness Day”.  I had prepared a very long blog for this years “Go Blue Day” but changed my mind about posting just yet ;). Instead – let me introduce myself……

Hi – my name is Debbie (obviously). I am a wife, mother, community service worker, sister, daughter, aunt, nerd, blogger, small business owner, facebook crazy and animal lover.

And I have a son who lives with Autism. 

I am very vocal about his diagnosis both face to face and online with facebook plus my blog.  And if you get me started – I can talk all day about the topic!  I am no expert – but do love to share the information and experiences we have lived.  Someone recently asked me if I thought my “labelling” would be to Mr C’s detriment now and later in life.  It got me thinking…. And the simple answer is NO! But it did get me thinking about why I am so vocal….

Firstly – there is a lot of misconception about Autism.  “Rain Man” & “Mercury Rising” are 2 films that come to mind, and of course the wonderful Sheldon from “Big Bang”. In all seriousness no two cases of Autism are the same. The more information we share and solutions we find to issues, the better the world will be for kids like Mr C. 

Secondly - I believe there are a lot of kids out there, and adults too, who need support but are not yet diagnosed.  If our story reaches just one of these people to gain assistance then it’s worth it J

And finally – for the families who live with Autism. It’s not as rare as you may think. And when you first get the “diagnosis” it can be scary, overwhelming and although you have found some answers it just leads to more! You are not alone. There is a whole community out there that just “gets it” and you don’t need to hide. We understand and support each other.

So – I could go on and on about the “issues” Mr C faces and how it effects our family – but won’t.  Instead – please feel free to comment, ask me a question or message me. 

“Go Blue” tomorrow and post some “blue selfies”.  Let make the world aware……

<3 o:p="">

Mean mummy!!!

Interesting discussion tonight. If we could change just one of Mr Cs behaviours through whatever means ie therapy, discipline etc what would it be??? 

Miss M decides rocking. Only because she shares a room and he wakes her. 

Moth - undecided. Will have to have a think about it (duh). 

Me - without a doubt being called mean. "You mean mummy" - because I say no! I say no to: shopping to buy a car, running in the rain, hitting your sisters, to running in the busy street, do your buckle up ;) !!! 

I also get the "mean mummy" routine when I say yes and he says a no!!! Take your tablets, have a bath, eat your tea, pick up your toys, no tv til you pick up your shoes. Etc etc etc. 

Yes I am the meanest mummy ever. 

I hate hearing it I truly do!!! 

Think tomorrow we might start working on the time out when I hear those horrid words!!!! Stay tuned for an update....

Do up your buckle!!!!!

Because this issue came up on our local Community Facebook forum… I thought I would share some more!!!!  Plus I am in a ‘venting’ moment ;)

This was my response re a child not restraint in a seat:

“I have held my tongue on this one but have decided to respond. My son is diagnosed with ASD (Autism) and one of his many issues is the sense of touch. Wearing a seat belt actually HURTS him. This has been an ongoing issue since he was a baby. We have never been able to keep him "buckled up" and yes we have tried all sorts of things to remedy this, including 2 years of therapy and devices. While on short trips I am very guilty of not doing up his seat belt and do my best to have him sit in his seat, but often this struggle becomes an out pour of emotion from him and he crawls on the floor of the back seat, screaming in pain and fear...... I would also like to point out that no- it was not me you saw during the time frame you posted. HOWEVER - you do not know if there was extra-ordinary circumstances surrounding this. But so quick to judge. Unfortunately its happening a lot in the town which saddens me when it goes hand in hand with the amazing generosity we have seen of late. So my question is back at you - would you knowingly cause a child actual real pain OR risk their safety?? Its a hard question. Please STOP judging!!!”

I am not going to get all psycho on the judging issue here - but let’s look at seat belts in more detail!!!

Since a baby he has never been able to handle wearing straps, even backpacks were something to fear.  We of course had the baby capsule when Mr C was younger and then he moved up into a baby seat.  For some reason he ALWAYS managed to get the shoulder straps off.  We would pull up, fix and tighten and before we got back in the car again, it would be off again!!!  It makes a 2 hour trip to Toowoomba very long!!!!

Then he out grew the baby seat and into a child seat.  We started with a harness, which of course never stayed buckled!!!  We put the paper cup trick over the latch – but no fooling him…. beside he always use to eat the cup....hehehehe

  

We even tried this.... but he would just crawl out of the seatbelt!!!

Product available at http://www.mobilityengineering.com.au/buckle-cover.htm

To now – still in a child seat but we can, and often he will himself, buckle up!! This has taken a huge amount of effort and time and therapy.

There are of course exceptions.

After school and after a shopping trip – he has been so over powered with sensory input – having the belt on will still cause major meltdowns.  Occasionally we have been able to do the threat/bribe thing and it might work ie. “Put the buckle in so we can go to ‘donalds’”, “we can’t go shopping until your seat-belt is on”, “put it on now or I will stop and you can get OUT!!!” lol. Other times we are thankful he sits in his seat.

When it’s a long trip out of town – we have an action plan.  Most of it is distraction.  Check out my “Yep it’s traveling” post.  But still there are time when I hear the cry from Miss M – “Connors got his belt off AGAIN!!!” – normally followed by a huge SIGH!!!

It is a hard choice – cause pain or keep safe.  I am hoping one day our local police will pull us up and give him a ride to the little room (although I don’t want the fine!!!).  It might just scare him enough… or he might enjoy the ride too much!!!!

  

(For more ideas and tips to try if your little one has ‘unbuckling issues’: http://thecarseatlady.blogspot.com.au/2010/12/tips-tricks-how-to-prevent-someone-from.html)

It's a good thing.....

As a parent I am ALWAYS concerned about the welfare of all three of my beautiful children, but when it comes to Mr C… I am stressed to the max!!!!

After such an eventful, trumatic and stressful time for our family last year, and Mr C’s struggles with Kindy – yeah – I was totally maxed out about prep. I mean seriously…. 5 days a week???  So many changes??? So many kids during breaks?????  Yep – Mummy was in STRESS CITY!!!!

Of course we did the social stories, the pictures, the preparation, the meetings with staff, the uniform try ons, the new shoes (OMG they are BLACK!!!), the discussions with professionals about lunch boxes…. All the things we need to do when big changes are happening in his and our lives…. BUT did that relieve Mummies anxieties???? Ha – not a chance…

What did I forget???  Who else do I need to contact?? Did I name everything??? What if he gets lost?? Will he make friends?? Will he punch someone??? On and on.  I am a worrywart!!!

So cute on his first day

First day…. We survived, apart from losing a hat.

 

Second day…. We survived - hat found!!!

Third day…. He is starting to feel comfortable… watch out for sand flying in the sandpit!!!

Forth day….. Let’s chat about his fourth day….

The fourth day was a Friday, and at his school they hold a combined group “assembly”.  So about 70 or so (my guess) kids in one room.  They sing songs, listen to a message and sing some more.  And parents are welcome to attend.  So I did.  Why? 

• Different activity in his already new routine
• Noise.  Lots of noise.
• Music – why? He loves soft music and the occasional (his favourites) loud music, but a live musical instrument through a PA system can and often does stress him
• New room.  Although he had been in the room last year, this was a new activity being held in this room.
• Lots and lots of people – this means noise (yep covered that one), smells, touching etc etc
• Tired – already been a long week.

So I attended fully prepared to grab him and take him outside if he started stressing.  I arrived early, so was seated before he came in with his class.  I was so proud of him walking in holding hands with his teacher at the head of the line – he looked so grown up.  My little man.  He saw me and I received a huge smile.  One of those heart melting ones. He stayed with his class and quietly sat where his teacher ask him to – right at the start of the line.  Assembly began…

A welcome and songs.  He loves to sing.  He handled the songs.  He stood and sat when he was told and then the message began……

……And the shaking began……

…..first the head……

….then the rocking started…..

…….back and forth……

…….side to side……..

And I was ready!  On the edge of my seat.  Ready to go to him….

AND THEN IT HAPPENED!!!!!

A VISUAL OIL TIMER APPEARED in his hand!!!! I started to breathe again. 

This is one of his sensory tools.  He tends to focus on the oil drops and the world disappears.  NORMALLY – not this time. He had to show the little guy next to him and the nudging and rocking started again.  I was back on the edge of the chair.

A MINI BEAN BAG APPEARED.  The kind kids throw at the hoop…

AND this STOPPED the ROCKING!!!

He started to throw it in the air and his teacher sat on the floor next to him, gently guiding his hands back to his lap.  She stayed with him for the rest of the message (which seemed like an eternity to me) and he was happy!!!!

I CRIED!!!

After the assembly he ran to me for a quick “tight squeeze” before returning to his class with his friends and awesome teacher.

After all the stresses and concerns and plans… it does not matter how many times you explain or suggest, an educator will only do what they are capable or concerned about.  I found that out last year. 

BUT this year is off to a good start.  A few signs that put me at rest:

1. At the start of the line – walking in and sitting down.  He had some space.
2. When the shaking and rocking started – the staff were prepared.  
3. They had listen to my concerns and had 2 things I had mentioned to assist his sensory needs. 
4. Her gentle guiding hand.  Instead of control – guidance. 
5. And finally – she let him come to me for a squeeze. ;)

Yes my anxiety has lessened – still there – will always be there – but at least I know he is in caring compassionate hands while at school.  I know there will be incidents (still none ;) – yet), but we are off to a good start.  And yes – the teacher received a huge thank you in his communication book for her awesome assistance and support.

And so the year begins..........

NO MORE NAPPIES!!!

It has been seven days since MR C has worn a nappy to bed!!!!!  Dry bed every morning!!!

HOW??? Well he is a "big boy now" ......... 

And that is all!!!!

Well that did not go quite as expected...

The past six months I have researched sports and ASD, and the availability of programs in our small community with the hopes to enrol Mr C in some form of physical activity. 

Two sports have stood out. Gymnastics and martial arts (particularly teakwondo). 

So after a good twelve months convincing MOTH that some form of martial arts would be good for Mr C, and he would learn restraint NOT just killing skills, plus the fact the local group were offering a month of trial lessons free, he finally agreed to let him try it, with the condition Miss M join him. 

Now Miss M has been involved with a couple of activities over the years - dance for 3 years, gymnastics for a year and has never really stuck with it, loosing interest after a term or two, with mum pushing for it to continue. The final straw was a broken arm mid last year and mums lack of strength to push her on...  But again we thought that teakwondo might be a new thing for her to try.... So she joined us!!! So did Bub. 

So all 5 head down to class with high expectations. Mind you only the two were planning on joining in ;).

The first 2 mins of warm ups went well. Proud of my munchkins.... But then the yelling started!!!  Whomever wrote that martial arts was great for kids living with ASD forgot the sensory issues with hearing, and so did I!!!! He came running with hands over ears to Mum and Dad and asked that Mim cover his ears. After about 5 mins he told Daddy he needed to go.... And that was the end of that!!! While I watched Miss M, Daddy took bub and Mr C walking. 

Move forward an hour. The kicking starts. Mr C returns and thinks kicking someone might be fun... So races up to a complete adult stranger and kicks her!!!! Omg!!!!! So embarrassing!!!!! Then yelling starts and he runs outside again and waits for class to finish....

As for Miss M, she, although a bit stiff and sore, enjoyed the session. She actually started to look coordinated by the end - so we will try again next week ....

And Bub??? Once out of the pram at home started to kick the air!!! Lol. She has a pretty mean high kick. Hehe

My point of the story tonight is that no matter what you read, how well you research, no one can tell you what is best for your child. You have to be flexible and tolerant. We have not given up. Next week I will give him ear plugs and try again ..... Besides, there is a slim chance mummy might join in ;)