Snowflakes

Time to go make a coffee. This one is going to be a long one. 


Ready????

I am a mother of three beautiful children. Each with their unique personalities, skills, talents and yes challenges. I am writing today's blog for a reason. I come here to journal. To tell a story. To share with the hopes that people will gain an understanding, raise awareness and most importantly to relate to other mums who may have a child that see the world from a different prospective, so we can learn from each other, support, and especially assist other kids and their families. 

And now, "finally", I hear some of you breathe a sigh of relief, I need to take some of my own advice. 

After conversations with family, friends, and tonight, MOTH, I realise I can not ignore this any longer and I need to start down the road, again.....

I starting taking blogging a bit more seriously when we started the journey with Mr C. Our learning curves and records of the exciting developments are a great read for me to go back through. To see the achievements, celebrate the "wins"....

When Miss M was first diagnosed with ODD, my initial reaction was here we go again... New strategies, new learning curve. I will honestly say that ASD is an easier journey. We have not yet found the support we need for Miss M, the strategies or plan. Medication has not worked. Therapy not helpful. We are ongoing with seeking answers to even more questions. I have not blogged much on this topic, but I think I should. I think I spend all my energy on the fight. It's really not a good place, and it's emotionally exhausting. 

During this time our beautiful bub has tagged along. Providing joy, smiles, laughter. Her speech has been delayed and we started therapy several months ago. We are seeing slow, very slow, improvement. 

For years we have had people ask us if we need to watch for "traits" since we had no understanding of ASD when Mr C was little and how verbal I am about early intervention.... I of course said yes - we have a better understanding but I don't see any of the issues we faced with Mr C. 

Occasionally someone will mention the way she reacts to loud noises (doesn't every child??), or the patterns she creates (everyone loves patterns...), the delayed speech (come on - she is the third child after all), the tantrums (ever heard of the terrible 2s?? Non verbal causes frustration too) and still I didn't see it.....

Until tonight. 

I have been not wanting to go down this road, but after a week of this child not sleeping (yes again tonight) something clicked. Mind you when MOTH came home from work and commented on the rug carrying and hiding under blankie, the rocking that has just started (OMG!!!!), the fights and melt downs when the TV is turned off (focus much?), the impossible potty training, it all came together. 

Once we sat down for a serious discussion more facts came to light. Routine. A very strict routine. Non stop tantrums (not quite the head splitting events Mr C achieved but she is getting close), the eating - getting harder and harder to get her to sit and eat a meal... It's starting to add up. 

Have I ever mentioned if you have met a child living with ASD, you have met ONE child living with ASD!!! 

I have stated before I am not an expert, and this is OUR story - every child is unique, living with special needs or not!!! Mmmmm - I forgot that statement included the three children we live with. 

This is not a place I want to go. But I do know that we, and she, are better knowing if/what we might be dealing with. One way or another. 

I am away next week for a work conference. I love this time away, in fact it's the recharge I need, believe it or not!!! Next month is already busy.... 

Mr C has a paediatrician review and psychologist visit in Toowoomba. 

Miss M also visits the paediatrician. A GP appointment to set up a new Mental Health plan (which is always a battle) for us to see a NEW psychologist PLUS her foot has been hurting her again....

Bub has her ongoing speech therapy and we have referrals in place for OT and physio ( thanks to the speech therapist for suggesting... Did she pick up something I missed???). Now it looks like a trip to the child health nurse for some serious discussions.....

Oh and did I mention I work full time??? Lol

I don't know if I can do this..... I am tired just thinking about it. 

The only thing that keeps me on track at the moment and the courage to face this, what ever "this" may be, Is seeing the positive benefits from Mr C's early intervention. We recently went out for coffee and he was the best behaved child of the 3. 

Kinda says it all doesn't it? Wish us luck..... 


Finished your cuppa??  


Think it's time for something stronger....

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……

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