Thursday, December 11, 2014

The Little Girl Bag






   The Little Girl Bag
                                  
                       designed by Lorelei Jayne













This week I was given the opportunity to be a test sewer for a pattern which was re-launched today.  The Little Girl Bag by Lorelei Jayne is just sooo cute!

It's a quick sew (I made it in an hour with all the interruptions 6 children are likely to give) and very easy to follow.  







This bag is fully lined and can be made from a whole range of fabrics.




Mix and match the pieces in complimentary fabrics or add some embellishments for a bag fit for a princess.  Oh and boys don't miss out either - make it out of plain or boyish fabrics and it is a versatile bag for carrying matchbox cars or blocks or even filling with dirt (as our Toby loves to do) 


Seriously a very easy pattern, quick sew, multiple uses and design applications and FREE!!!!  

Check it out on the Lorelei Jayne Blog HERE  or on their FB Page HERE







Crafty Time :)

I'm making a more concerted effort to do some "me" things... one of these things is crafty stuff.. sewing, knitting, scrapbooking etc etc...  Some ties in with a little business venture which will formally launch early 2015.  It's something that I really feel soothes my soul and allows me to be more me (that probably does't make much sense)

So I unpacked my new sewing machine a couple of weeks ago.  It's nothing flash, a spotlight rebranded machine - Elna 40 (rebranded Janome Magnolia or Janome 8077 - there are differing views) and started cutting into my precious minky to make Toby a tag blanket.  He has a fascination for tags, rubbing them, threading them onto his fingers or just stroking them when falling asleep...  he will scout them out to help sooth him - to the point that I found him snuggling up to a pair of Aerynns knickers one day, stroking their size tag!!!!

Well one blanket evolved from under the sewing machines foot... and Toby LOVED it!  a smallish, patchwork blue minky one one side, quilting cotton the other with numerous different size, thickness and width tags on its outer edges.  I fastened a ribbon tag with a snap on it so the blanket can also be secured to prams and trolls for added reassurance it won't be lost.  

Tag blanket getting the snooze of approval, Adelaide Nov 2014

I thought all was well until Miss Aerynn spotted Toby's new blanket... and insisted she needed one too!  And in princess pink - seriously, she is such a little princess and pink is her favourite colour! So out came the minky stash, scissors and within an hour Miss A had her own matching Taggie blanket :)  





Two very happy little kidlets... and I swept out some of the cobwebs which my creative bug was starting to drown in :)  Now to do Domeniks minecraft weighted blankets, weighted toy, santa sacks for everyone, maybe a few other little projects in between... oh and starting on building up a supply of bits and pieces for the launch of "The Simple Life" online store - opening 2015!









Quick Update...

It's been almost a month since I last posted and so much has happened.  At the moment I am completely exhaustipated (yup it's a word - even if I made it up it's a real word hehe) We have had 2 trips to Adelaide, numerous specialist appointments, therapy sessions, blood tests, EEGs, risks, diagnosis and head scratches in these last 3-4 weeks.

Miss A and Mr T have both had a genetic work up and have had bloods taken and sent off all around the world to see if there are any genetic reasons for their situations.  Toby is physically a perfect specimen of a 20 month old boy, but there are no obvious reasons for why he is not talking.  He is communicating, and very social and an absolute delight, but not one single real word.  He has attempts and has a few babbles, but no words.  He is carrying on his sisters tradition of stumping the medical fraternity so it seems ;)  His speech therapist is keen to have a sedated ABR test done (its for hearing) to completely rule out hearing issues.  That's not to say that if he passes it that it isn't hearing in a non-sterile world (basically saying background noises cause confusion with the sounds meaning he can hear but not really interpret or make out what he is hearing).  The general consensus is that it is to autism related, but my gut is starting to twitch at that possibility.. he has started head banging from frustration and biting, and when we lit up the Christmas lights he started running in circles and flapping his hands with excitement... not much in the scheme of things, but possible traits nonetheless.

Miss A, well.. Aerynn, what can I say?  lots of worry and concerns there due to her headaches escalating to migraines and now seizures.  She has seen a neurologist and had an EEG which came back clear - however, he still suspects she has epilepsy, something called a partial absence seizure, which apparently don't show on EEGs.  We are to try and record the seizures she is having and sent the video to him for confirmation.  Once has has this she will start on medication.  The other possibility isn't so nice... she is being booked in for a sedated MRI early 2015 to rule out a possible brain tumour.  The dr reassures us that her pattern of migraines etc is not indicative of a tumour (phew) but it needs to be ruled out for our peace of mind.  In the meantime we are to keep her on her current meds and connive keeping records of her headaches and episodes.  We may even be able to wean her off the meds in a few months time if she has no more migraines (and MRI etc are clear)  so some positives there :)  

The rest of the family is as per normal... a group of 3 hormonal, surly but sometimes amusing teenagers who have completed their relevant schooling years.  Mr W has graduated primary school this year and onto high school next, Mr A has completed Middle school (year 10) and took out the grade IT and Woodworking achievement awards (Yay!!!) he is into senior school next year and pulling out all stops to get into the uni courses he wants to pursue.  

so that's a quick update... sure there's been other messes, laughs, tears, tantrums and giggles in and around... but like I said, I'm exhaustipated and my brain is completely fried so trying to remember everything is a stretch too much for this old duck at the moment ;)  


Monday, November 17, 2014

Madness week 1 is here... and Menu Planning

This week we prepare for our weekend in Adelaide.  the weekend itself should be nothing more than relaxing and listening to the waves, gulls and palms in the breeze as we put our feet up at Adelaide Shores Adventure Caravan Park...  but the Friday and Monday surrounding the weekend are going to be busy busy...  Not only are we doing the 500km trip to and from Adelaide but both days have medical appointments and we can't miss any of them!

So this week is lots of housework, list making, packing, stressing (because that's what I seem to do best) and planning to make sure we haven't missed anything, any one or the likes ;)

So menu planning this week is literally using up what we have and going to be for the fortnight starting from today (Monday).  We don't want to do any big shops over the next week and a half while we are going to be in and out and away so boring, pantry staples it is going to be ;)

  • MENU PLAN: November 19th - 26th


    •  Monday:  Slow cooked Porcupine Meatballs and Pasta
    •  Tuesday:  Pasta Alfredo  with Schnitzels
    •  Wednesday: BBQ or Rissoles with Salad
    •  Thursday:  Marinated Chicken with Steamed Veg
    •  ** Friday: On the Road - Takeaway? Maybe chicken and salad from Woolies
    •  ** Saturday: 
      • Lunch -  Cold Meat and Salad Sandwiches
      • Dinner - BBQ with Pasta Salad and Coleslaw
    •  ** Sunday:
      • Lunch -  2 Minute Noodles
      • Dinner -  BBQ with Salad
    •  ** Monday:  On the Road - Takeaway
    •  Tuesday:  (Steve and Jess here)
          •  BBQ with Salad lunch 
          • Slow cooked Beef Casserole
    •  Wednesday:  Chicken Mignons with Steamed Veg

      ** Back up meal:  BBQ with Potato Salad


    ** indicates day in Adelaide or on the road

Sunday, November 9, 2014

So much to do....

Madness, I tells ya, pure madness!!!

The next month is going to take it's toll.  2 trips to Adelaide, a Christmas Parade, Christmas organising, teenage school issues, My school stuff (or working out if it's even possible for me to study!) and then regular family life and dealing with our day to day things on top...

List making is going to be the thing to get us through...

A weekly list of general things.

A Christmas preparation list.

Adelaide trip lists x 2 - one for each trip

Menu planning

and kids therapy lists for both daily and weekly therapy and where we are going to squeeze it in!

At the moment I'm feeling very out of control...  I'm hoping woking out what needs doing, in what order and when will help us feel a smudge calmer and confident that we can complete this month with a little sanity left in reserve...  Here's hoping!!

Starting with    this weeks list...  

Appts:

  • Monday 
        • 9am - high school
  • Tuesday
        • 2.30 Podiatry Mr T
        • 4.30 - Millicent, Aleks lizard
  • Wednesday 
        • 12.45 primary school re autism SA visit
        •  2.00 group therapy
        •  3.30 groceries (Must take shopping list!!!)
  • Thursday
        • 8.45 Paediatrician Miss A
        • 11.30 Speech therapy Mr T and Mr D
        • 4pm Rubys drop off Miss K
  • Friday
        • 8am Rubys pick up Miss K
        • 9am Drop Trixie-Belle at vet for de-sexing
        • 10am Sensory Processing meeting
  • Saturday
        • 11am Christmas Parade - Mt Gambier
        • School lunchbox baking
  • Sunday
        • Mamabake - Christmas puddings, dry mixes, vanilla paste and stocks

To do:
  • Menu Plan
  • 2.5 hr study block x 7
  • list for Adelaide medical appts
  • list for Special Childrens Christmas Party weekend
  • Update and organise Aerynns medical diary
  • Drops in Tobys ears

Daily

  • Therapy Mr D - brushing 2-3 hourly, therapy box 20 mins, weighted therapy 10-15 mins, whole body activity 10-15 mins.
  • Sensory Play all children interested 20-30 mins/day
  • 5-10 minutes AUSLAN with Mr T



Photo-a-Day aka PAD

I'm doing a "break" month this November...  Mostly as it's becoming incredibly hectic with appointments and end of year organisational stuff (honestly it's because I've been lazy again!!!)  I have promised myself to pick it up Dec 1 and run it into the new year.  

I do have the rest of October to upload... I may do some images for Nov, but at the moment I have school, appointments, 2 trips to Adelaide (1000km round trips each!!) and a difficult situation with a teenage daughter to deal with...  Looking forward to some more peaceful, calmer times where I can enjoy more without the stress!!!  

Saturday, November 8, 2014

A Speechless Life is Not Necessarily a Quiet Life

We are coming to terms with the face that Toby has a complication which has so far rendered him to be non-verbal.  For all intents and purposes he is otherwise a completely normal 20 month old baby boy.  


He laughs, cries, blows bubbles, runs, climbs (and OMG is he ever a climber!!!)  He hugs, kisses and absolutely loves his siblings.  We aren't sure, but our GP, paed and child health specialists all believe he may be deaf BUT he reads body language perfectly, he will get Aerynns dummy or sippy cup if she is upset or in pain and he has his own way of communicating with us what he wants.

Toby's life thus far has been speechless, but he communicates well.  He can't understand what we say, but he knows when we are cross, happy, sad or even being silly.  

Toby will remove his nappy when it is wet.  If it is secured under clothes (to stop said removal LOL) he comes, grabs my hand and lays down on the ground in front of me patting his nappy indicating it is time for a change.  Sometimes he will even bring me the clean replacement as well!  Oh and if it is dirty he will pat the nappy, screw up his nose and make a grunting kind of hissing noise like he is indicating "yuck" 

Tobes lets us know when he wants a drink or something to eat.  He is often seen raiding the cupboards for bowls for cereal, plates for dinner or toast or a cup for a drink.  If he wants milk he will get the big 3 litre bottle from the fridge and struggle dragging it to wherever we might be - seriously the bottle is half his size!  if he wants something he shouldn't have he will sidle up to us with the item behind his back, and he will work his puppy dog big brown eyes, begging without words for a little treat... and more often than not we give in to him. Yes we are suckers... Ok,  I am the sucker ;)  

If he wants to look out the kitchen window to look at the chickens and ducks he will pull a chair up and come find me for help up (it's a high window so he usually grabs a stool which he can't climb all too well) whiles he is gesturing to the window he will grunt and move his mouth like he is talking to us.  All animals make the same sound to Toby...  he makes a sound similar to the ending of the word "duck"  so it's kind of like he is saying "ugh ugh ugh" and that is for ALL animals... a dog goes "ugh ugh"  the cat says "ugh ugh" and the chickens and ducks are "ugh ugh ugh ugh ugh ugh ugh!!!" 

Ask Toby for a hug verbally and there is no response.  Get his attention and open your arms wide and he is there with a huge squeeze in no time.  He knows how to blow kisses (and give sloppy loves as well)  and will play "hide and seek", wrestle and loves jumping on the trampoline with his siblings.  

If there is a big noise outside, Toby won't turn to the noise.  If it is close he will run to us for comfort.  Is he feeling the vibrations under his feet or in his body?  We just don't know...  


Toby is far from quiet.  Yes he plays silently, he has silent conversations where he moves his mouth but there is no sound, but other times he is LOUD!  He yells, laughs, cries, screams, throws things, bangs, makes all kinds of noises... he just doesn't say any words... at all... a little babbling... mumumumum and the occasional bababababababa and odd dadadadada... but our speech therapists tell us they are simply developmental noises.  

They aren't words.  They are primitive verbalisations.  We need to be realistic.  


Honestly, we don't know what the future is going to be with Toby's communication.  We don't know what he can hear, we don't know even if it is a hearing loss or something else.  He has a full audiology assessment on November 24th.  It's scary, we don't know what to expect... The experts are saying that other than severe hearing loss the other main reason for non-verbal children is autism, however our Mr T is not exhibiting any signs despite our strong family history of ASD.  Maybe he will one day come up and start talking, and we won't even know it... we will just start talking with him, then it will dawn on us that Toby spoke!  Wishful thinking??   Maybe he will require hearing aids or a cochlear implant to help him hear sound and start building a verbal form of communication. Then again maybe he will be speechless for life... But we do know that no matter what happens, he is a happy little man who communicates so well, and there are very few times that he doesn't get his point across.  And no matter what happens we just love out littlest man, he is perfect in our eyes no matter what!


Tuesday, November 4, 2014

Monday (ok, no it's not monday) Menu Planning

No, it's not Monday, I know... yesterday was spent in town for appointments trying to get the oldest daughter right for school (augh!!) so once again Tuesday is becoming Monday and well. At least I'm planning!


Monday, October 27, 2014

Menu Plan Monday

We are starting to have warmer days meaning possibility of BBQ's woohoo!!!  Also the family are enjoying changing things up with new recipes and flavours :)

MENU PLAN: October 30th - November 5th

Monday Monday...

Monday blues digging in...

Oh and menu planning is about to start...  

We've had a horrible weekend... lots of friction and niggles happening. I can't blame the full moon either.  It's left me feeling very flat and down this morning.  

I'm at the point where I'm feeling very unsupported with my decision to do this diploma - to the point there was a comment that I didn't get permission to start it in the first place - I mean what the!?!?!  

Anyways...  trying to schedule 15-20 hours into a week which is already packed with raising the children, dinner times, housework, Dommys therapy, Aerynns migraine treatment and documenting and being a solo parent most of these hours is almost insurmountable.  I honestly don't know how I can think I can do it! I was going to the library on Saturdays when Mr A worked and that was successful... 5-6 hours of solitude and study...  that's been taken away with Nathan now umpiring cricket...  All I have now is Sunday and the library hours are skewed, and do I really need to take an hour out just to travel there to start with?  Just so stressed and not wanting to make the wrong decision about whether to continue or not.

I think that's what has me down the most... I was looking forward to getting this diploma done, learning something new and forging a career I can manage from home no matter what the kids or life throw at me...         

anyways, trying to be positive and perk up... It's miss K's 15th birthday today so hanging on as much as possible...  routine might help... off to work out the menu for the week! 

Tuesday, October 21, 2014

PAD Oct 8-14




October 8: H is for... Heavenly Hair

It has taken a lot of patience for Aerynns hair to grow.  It is so fine and brittle that it breaks as soon as you look at it so it would seem.  It's taken 3 years for it to grown long enough to even brush her shoulders!  We love her ringlets and that we can now do girly pony tails.  Hopefully, with a little more patience (and maybe another 3 years worth of growth) we can start looking at braids!!!

~~~~~


 

October 9:  I is for... International IRun4 Inspiration

IRun4 is a wonderful international organisation which pairs runners up with individuals (mostly children) who have limitations (probably the least complicated explanation).  The whole group is one great big pool of inspiration, positivity and celebration of everyones milestones; be it as simple as learning to walk, having a few days without illness or a runner running their first 5k or a marathon. It started with a single pairing, and has grown into a wonderful group with thousands of matches, the website shares the full story so I won't go into it here.  

Aerynn has been blessed with a gorgeous runner.  She loves "My Emily" (as opposed to her big brothers girlfriends who is also an Emalee, for Aerynn she is "Aleks' Emalee")  Around her birthday Aerynn received a beautiful package fro the USA with some medals Emily had received from some of her runs which she dedicated to Aerynn, as well as some photos (and a gift for her birthday - part of which is the skirt she is wearing in this photo)  Aerynn loves the medals, and will hold them whenever she can, particularly when feeling a bit off, she will look at the photos telling us that this is her Emily who loves her all the way over the water <3

There is also a sister group so family members who are the unsung heroes in families with individuals of additional needs can also be held up and celebrated.  William has his own buddy through that group, Tammy is also from the USA.

Such a simple idea, a simple concept for a group but a while lot of inspiration fro some special children and some awesome runners who go out of their way to bring awareness and smiles all around the world.  

BTW, IRun4 is looking for families who would like to join the family.  They have a list of runners who are eager to be matched to a buddy and start dedicating their runs and inspire each other - alternatively runners are always welcome to join.  Please check the group out here: Who I Run 4 or on Facebook here: IRun4 Michael

~~~~~


 

  October 10:  J is for... Jumpin' Jehosaphat!!!

Look what just hatched!!!!!


~~~~~


 

October 11: K is for... Kahli!!!


~~~~~



October 12: L is for... Luscious Long Lashes on our Little Lassie


~~~~~




October 13:  M is for... Managing Mealtime

We have a family of magpies who brought their babies out of their nest for the time today and were teaching them to scratch and forage in the paddock behind us.  Mr and Mrs Magpie are very placid for us,  probably helps we allow them to come and finish off the chicken scraps and feed them the odd tidbit as well ;)  It pays of though.  They don't swoop us and will almost eat out of our hand and allow us super close (although we didn't even try to get close while their babies were out today!)  Apparently they make a rather brilliant pet - not sure on the legalities of keeping a pet maggie though ;)


~~~~~



October 14: N is for... New Dress

Aerynn was not quite sure about modelling in the crisp weather we were experiencing today though...

~~~~~

Menu Planning... again, not quite Monday...

We had some great success with last weeks menu plan.  The family absolutely loved the vegetable frittata and home made fettuccine Alfredo :)  It was nice to know that my planning and searching for new recipes is paying off!

This week looks like a nightmare on paper with appointments etc so I'm going to give the online shopping another go.  It's not our preferred supermarket, but sometimes we need to sacrifice the comfortable for the realistic ;)  Here's hoping Woolies get our order right this week!!!



MENU PLAN: October 23-29th

Friday, October 17, 2014

Woolies... I'm Impressed!!!

Menu planning is going to pay off soon... Woolies click and collect shopping is my new best friend!  Ok, maybe not, but close to!!  

We trailed this week working from my menu plan and I swear the groceries were cheaper in the long run as there were no impulse buys added to the trolly.  I did my "shop" at midnight last night ad Nathan collected it on his way home from work this afternoon - soooo easy!!!  Oh and there was a free sample tossed into one of my bags as well ;)  

It's going to well and truly be used during the heat of summer!!!  We can live like hermits and not have to leave our air conditioner (very likely my REAL best friend in summer) and have all our food and groceries organised, hand picked and collected with only spending a maximum of 10 minutes in the actual shop!!!  

I know, I'm still going to go shopping at least once a fortnight to get out and and because it's nice to feel interactive and "human" every now and then ;)  LOL  

Oooooohhhh I just realised, I can miss the big Christmas crowds!!!  I likey!!!!!  :D



PS - Oct 20, 2014

on unpacking we were missing half my parmesan cheese that I ordered and paid for.  I was offered a refund on my card for the amount missing which would take 3-4 days to process or we could collect the missing item from the shop.  We chose the latter, but so far haven't had success collecting said item due to our own time constraints.  Hopefully when hubby goes to the store today there won't be too much of an issue... To miss almost half a kilo of parmesan, which in itself isn't a cheap item was a bit disappointing as we were relying on it for dinner over the weekend...  Maybe we need to build in back up plans to our menu-planning and shopping regimes!

Tuesday, October 14, 2014

Menu Planning.... well, not quite monday ;)

I'm going to admit it right here, right now... I think I have bitten off more than I can chew with starting my web design diploma BUT that is coming from an over tired, poorly rested  and stressed out mumma, not the supremely rested, on top of things organised super mum I'm hoping one day to become...  I know it's just a small target eh, not that big a deal ;)  Miracles can happen ;)

Honesty, I need to get some more support in place around home, get the rosters back up and working and allow myself some breathing space.  School only went back from holidays this week so we are only on day 2 of school being back and commencing our regular routine... I need to allow time for the last 8 weeks in particular to settle...  We've had 3 children with urgent medical assessments, crisis after crisis to attend to and Ive not allowed myself time to stop and smell the roses as such... I need to recover because it's taken some time, but I'm realising that I can't stay strong 100% of the time...  Mamma time out is needed ;)

Of course as mammas we never rest, so becoming organised and rational is part of my "time out" processing...  rather sad eh, that organisation and the housework is my break away hahaha

so back to the point of this post...  MENU PLANNING!!!!

We have 2 chest freezers full of beef at the moment after we had one of our steers butchered.  Lots of beef and mince will be on the menu as a result.  Let's get these iron levels rising!!!!  :D



MENU PLAN: October 16 - 22nd

Thursday, October 9, 2014

Organised Chaos!

Augh Doncha love it when you doze off mid post and lose half your post :/

Well I can't even remember what I wrote.  Sure it most likely prize winning (pfft who am I kidding?) but that's not the point LOL

I think I was rambling on about needing to get organised and start building more structure in the household.  Having Miss K home the last 5 weeks before school holidays and all the appointments being thrown our way with very little warning has left the whole family organisational thing in shambles.  Time to rectify that!!!

The kitchen is going to be the one room I concentrate on the first week the kids are back at school.  I have to be able to provide and prepare meals for them comfortable and efficiently.  

I also need to get back into regular meal planning and organising the pantry areas!  It's going to take a lot of effort and preparation to get there but I'm hoping once done at least one section of our lives will be organised and run smoothly (wishful thinking possibly LOL)  I've recently stumbled upon a fantastic blog and website called The Pioneer Woman which I'm going to use to help put some things in place.  

Todays plan... organising meals for the next week using as much from the cupboards as possible...



MENU PLAN: October 9 - 15

  •  Thursday: Lamb Casserole
  •  Friday: Homemade Pizza
  •  Saturday: 
    • Lunch - Toasted Cheese Sandwiches (chicken, tomato and ham fillings)
    • Dinner - Porcupine Meatballs and Mashed Potato
  •  Sunday:
    • Lunch - Pancakes
    • Dinner -  Roast - TBA  with roast veg
  •  Monday:  Chicken and Chorizo Risotto
  •  Tuesday: Steak with Veg
  •  Wednesday: Ruby's Evening


    Snacks/Recess: Condensed Milk Cookies and Choc Chip Muffins


Tuesday, October 7, 2014

PAD Oct 1-7

A new month has arrived and I'm going to keep up...  seriously... well going to do my best ;)






October has an alphabetical and numerical theme...




~ ~ ~ ~ ~











A is for... Aleksandir and Aerynn and an Awesome Sunset <3  



















B is for... BUGGER!!!  The Big Boys Blue Beast 
Broke Down :(

















C is for... the Colossal Collapsing Cake 
Catastrophe of 2014

the photo says it all... Making Domeniks Lego cake did NOT go to plan.  Thankfully he still had a wonderful 6th birthday and the cake tasted yummy despite it's appearance ;)















D is for... our Devilishly Dishevelled and
Delightful Domenik

I know it's not the most technically correct of images but it kept calling for attention















E is for... Early Evening Excavation of Earth

Today we planted our tomatoes!!!  Everything is crossed they grow 
well this year and we get a lovely crop worthy of their 
namesake - Braggers :)













 





F is for... a Fascinating Family of Flies
Flitting through the Fragrant Flowers

Not what I had planned for today as the weather
 spoiled out plans, but then you get that :)













G is for... our Gorgeous Girl in a Gloriously Glowing Golden sunset <3


Monday, October 6, 2014

Dear Diary....

I'm done.  

Feeling so low.  

Spent, exhausted, emotional...  fraying at the edges.

I know tomorrow I will find the strength to go on...

Apparently Mercury is in retrograde or something like that, and there is a full moon due in 2 days time.  That coupled with the $hitty weather we are having at the moment probably isn't helping regulate my mood.

I should be happy we finally got a diagnosis for Mr D, but I am now left trying to make the right decisions for him, the pressure for getting this NDIS stuff right is so high!  We have to make suer he is coping at school, he is supported everywhere and balance that with ensuring we don't support too much so he can still extend himself and grow as much as possible.  I am feeling very very isolated as there is so much support and assistance in the cities, here in the boondocks there is pretty much nothing.  Even the local ASD support group is questionable at times :/  

We continue to try and build a relationship with Miss K.... and fail miserably.  I don't know how much more I can put in there and continue to be slapped around.  Not literally, well, not at the moment...  I struggle to comprehend how we can be told that she is the way she is because of moving and disruptions during childhood when her brothers display no actions like she does - not even her autistic older brother!  Surely if they have had the same experience and upbringing and our choices created a mental issue then the autistic child should struggle the most with subsequent social skills?  Instead he is doing well at school, holding down a job and has a girlfriend!!!  My head is struggling to justify it all....  I know we have been told there may be an underlying mental condition but that keeps being pushed to the wayside and blame thrown back at us all the time...  

I'm broken I think.  Just broken, drained and done in....

Miss A has been started on medication now for migraines.  It has side effects, hopefully she won't get many.  It should also help her allergies and increase her appetite which are positives.  Just watching her and noting anything unusual... it's hard to try and work out what is unusual in a girl who is already a "medical enigma"  But we have noticed her moods already going downhill.. or is that the full moon and mercury stuff affecting her too??

Then we also deal with Mr T being non-verbal and possible severe to profound hearing loss.  I don't know at times if he isn't hearing us... But then the only thing that could explain his non-verbalness if it isn't hearing loss is autism... I don't think I can deal with a third autistic child!  I know if that is the case we will, but my heart is breaking to think that our perfect men are possible being afflicted with this condition.  

I feel so guilty that either genetically or situationally we have apparently harmed all our children.  Despite our best efforts we have failed and now we have to try and pick up the pieces and go on.  I don't know if I can anymore... I really don't...

And if I say anything publicly it is whining, complaining, attention seeking...  

I need somewhere to debrief and work through all this...  It seems I can't comment anywhere without negativity so I find myself back here.  

I know I will probably be a bit stronger in the morning...  Hopefully...


Tuesday, September 23, 2014

Diagnosis

Something we have been aching for for at least one of our children.  Knowing they have illnesses and complications which are unable to be explained or understood is so frustrating.  

Today we finally received a diagnosis. 

Domenik is autistic.  

We expected it, I thought I was prepared, but I feel upset...  Upset that all the things we have been seeing can't be explained away.  Upset that we were right.  How odd is that?

He has been classed with a grade 2 disability (I think that is worded correctly) so will need a lot of support and therapy to help him progress through school and in life.  It also means automatic acceptance to the NDIS funding, just need to work out the paperwork etc...

I'm not sure what else really to say.  

He met every single criteria.. even in the section where he only needed to meet 2,  he met them all...  

Apparently we are to be congratulated for coping, managing so well and taking the steps to seek diagnosis...  

If we are to be congratulated, why don't I feel empowered or even the slightest bit validated?  

I'm hoping a good cry in private will help ease this feeling and we can start to feel positive and know we can at least move forward with getting assistance for one of our brood...  

We FINALLY have answers, we know for once we are not along, and that there is help and support out there....  

Saturday, September 6, 2014

Aching

My heart is aching...

No matter how hard we try to make life easier and to get back on an even keel something happens.

We've been fighting so hard tog et help for Miss K.  Ever since she was in grade 1 we have had an inkling something was a little amiss, but we didn't think things would get to this point.

Yesterday we finally had a paediatrician appointment followed by her therapy session at CAMHS (child and adolescent mental health services)  new information has come to light.  I can't be certain it is all accurate, but we can't take the risk anymore.

Apparently Miss K is has been hearing voices.  She has been cutting, in fact her whole arms are covered in cuts.  We don't think she is cutting to really do much other than get attention - but that in itself is concerning.  She has accessed medications, knives and scissors at school and threatened other children's lives and welfare on top of her own.  

At the very least she has been diagnosed with ODD (Oppositional Defiant Disorder)  and depression and suspected psychosis and related mental health illness.  

We are reeling...

We knew things were bad.  We have been pushing so long to get help.  We have hit roadblocks all the way through being told that it's nothing, or it's just her... now this....  Its a relief to know that we are FINALLY being listened to and getting help.  Just, this?!?!  Our hearts are breaking that she has been unwell and unable to tap into help for so long...  

So we are now waiting to see a psychiatrist for her.  Until that happens we have made the choice she is to remain home as we can not be certain she is safe any longer at school (or other students for that matter)  Hopefully it will be sooner rather than later.  

I'm exhausted....  

Trying to hold everything and everyone together...

It's not easy, but what else can we do?  

**breathe**

Tuesday, September 2, 2014

A Nervous Eve....

I've been working hard to ignore it, but it keeps coming up and tapping me on the shoulder.  It leaves me shaking in my boots but hopeful at the same time.

Tomorrow is Toby's hearing assessment.  I'm trying not to worry, but when your doctor runs several rudimentary tests to see if your baby is hearing and he doesn't respond it quite frankly doesn't look good.  His ears appear healthy and have no sign of fluid behind the ear drum, but our little man still isn't talking or babbling in the fashion an atypical child does.  Heck, he's not even babbling like any of his siblings were at this age!  


Toby, aged 17 months
August 29, 2014
Our beautiful little man has had us fooled.  He communicated without words.  He has the most expressive fact and chocolate brown eyes you could just drown in.  He hasn't needed words to date, and we probably wouldn't have thought anything was amiss for a while yet if someone hadn't mentioned how well their little one at the same age talks and it dawned on me that we still haven't had a "mumma" or a "dada" or even a "bubba" from Mr T.  


I know having a child who has a hearing impairment is very manageable in todays world. In fact I have a niece and 2 nephews with hearing impairments and they are very well adjusted teenagers and young adults now.  BUT and this is what worries me the most...  but, they developed speech.  Toby hasn't.  Their hearing loss wasn't picked up until they were quite a bit older.  I'm worried that the prediction from the Dr of a profound deafness might be true.

We have driven ourselves (well myself) batty watching Tobes for any signs he is responding to sound.  I think my hands are all clapped out and my fingers fatigued from snapping.  I search his eyes for any awareness that may flicker in their depths, or for a twitch on his face which may indicate he heard something... anything....  

today he turned around when I called his name.  I'm hoping beyond hope he heard me.  A silly part of my subconscious says i should cancel tomorrows test because he heard me, but the sensible part of me quickly slaps that lunatic down...  

So this time tomorrow we will know if our little man can hear us, how much and we will have a better idea on what the future holds for us.

I'm a mix of emotions.  

I don't want to admit there is something wrong...

But deep down, my gut is telling me we are on the eve of some huge changes for our family.

Monday, September 1, 2014

Needing to Hold On...

With so much upheaval in the household at the moment I'm needing something to hold onto again.  So much is changing, lots of challenges ahead and TBH I don't think we have been this unsettled for such a long long time... So here I am, starting on the 365 challenge again.  It will at least give me something positive to look for in what could be some very hard days ahead...

So today, September 1st, I started again.  I might upload in weekly lots so as not to bog my blog down with daily images...  

So I should probably admit I actually picked up my camera on Saturday just gone for the first time in many months - and it felt GOOD!!!  We went to the beach at Port MacDonnell with the kid lets (it was Toby and Trixies first visit to the beach) and tried to remember what it was like to relax and forget our worries... it worked :)  



This photo is of our puppy Trixie-Belle... she loved the water and being free on the sand, but most of all she loved to DIG!!!!  


Menu Plan Monday

Week: Sept 3 - 10, 2014
  •  Thursday: Shepherds Pie
  •  Friday: Homemade Pizza
  •  Saturday: 
  •  Sunday:
    • Lunch - Pancakes
    • Dinner - Corned Beef
  •  Monday:  Sausage, Veg and Gravy
  •  Tuesday: Slow Cooked Beef Casserole and Toasties
  •  Wednesday: Porcupine Meatballs and Mashed Potato


    Snacks/Recess: Condensed Milk Cookies and Choc Chip Muffins

Tuesday, August 26, 2014

Menu Plan Monday

yes, I know, it's really Tuesday today, not Monday... late again **sigh**



Week: August 28-Sept 3, 2014
  •  Thursday:  Praties (AKA Jacket Potatoes with homemade Garlic Butter, Coleslaw and cheese)
  •  Friday: Homemade Pizza
  •  Saturday: 
  •  Sunday:
  •  Monday:  Slow Cooked Pork Chops with Mashed Potato
  •  Tuesday: Quirky "Fried" Rice
  •  Wednesday: "Take it as it comes"  (Warnambool appts)


    Snacks/Recess:  Butter Cookies and Whole Orange Muffins

Blah!

so much for keeping up here.  I keep thinking I need to post, I need to document this or just update why don't I but procrastination seems to be the thing at the moment.  I could make all number of excuses but that's what they would be - excuse.  5 minutes while the kids are napping should be enough, and would mean I don't need to do a bulk update...  I need to start being more accountable **slaps self**

So we have had a tumultuous time of things lately.  Nathan has had his nasal surgery just last week.  The surgeon was shocked that his nose was 100% occluded from the nostrils all the way through to the sinuses.  What should have been a 45-60 minute operation took just over 1.5 hours!!!  He has had a bit of trouble adjusting to the post surgery routine.  He needed to learn to use a gravity fed netti pot 4 times a day and he is in the middle of a painful healing period.  Hopefully he will be back to 100% soon - I can for certain say that I am glad his snoring, sniffing and apnoea moments have all but stopped!!!

Miss K is causing us a lot of stress at the moment.  Running away, lies, self harm, more suicide threats etc.  She was re-assessed by CAMHS and has been categorised priority 1 and assigned a social worker/therapist.  Through the school she has also been assigned a social worker and a behavioural specialist.  She has had a period of almost 8 weeks of non-attendance of classes without adequate explanation to anyone.  Her stories keep changing so trying to ascertain the truth is incredibly difficult - to the point we simply have given up and just take everything on face value and making judgment calls as things happen and are reported.  She has been referred to the CAMHS psychiatrist for assessment on wether we are dealing with an emerging mental illness as well as ASD.  Hopefully by the end of September we will have something more concrete to work with in relation to our eldest daughter.  It tears my heart apart to admit just how bad things have become, but not admitting or talking about this feels like we are hiding from the truth.  We need to be open and transparent for our own sakes to be able to deal with this whole journey we are on... 

Mr D has started private Occupational Therapy, Speech Therapy and Physio.  OT and Speech both agree he is definitely well into the autism spectrum.  Physio confirm our fears that the public physic here have been causing more issues than assisting his feet issues.  It looks like he will need another series of casting to try and help correct his feet - joy :/  We are about to start filling out paperwork to hopefully get hims some NDIS funding to help pay for his therapies - at the moment we are "robbing Peter to pay Paul" as the saying goes in order to accommodate his sessions.  Dom has also been listed to have his autos assessment in week 10 of this term - that's only 4 weeks away!!!  We should be given a date and time very very soon in relation to this... scary and excited to finally be getting him the help he needs!

Mr A is still happily chugging along.  He has a lovely girlfriend who is very stabilising for him and is loving school and work.  He has been getting very regular hours for work and has even been given opportunities to step into a supervisory role - a BIG thing for him :)  He also has his L's and is begging to drive all the time :)  I'm being strict in not allowing him to drive with the little kids in the car just yet.  one day soon though, he just needs a few more hours under his belt ;)

Mr W is cruising along as well.. nothing major to report from memory...  I do have to follow up his ENT referral to make sure his snoring and apnoea episodes are for the same polyps Nathan just had removed... **mental note made**

Miss A is Miss A... nothing new really...  intermittent gastro issues, piecing up bugs every time we go into town and still no real growth to report.  She is her usual petite little self.  The paediatrician has looked through all her notes and requested some new tests be run for her.  She is determined we will get a diagnosis for our little princess.  No one deserves to go through life not knowing why they are ill.  She agrees too that it is not normal for a child to have blood in their stools, to vomit and poop mucous and to have seriously fluctuating blood sugars (just the other week she dropped to 1.3 bsl with 3.6 ketones and didn't come up properly until way past midnight!!!)  So more blood tests, ruing tests and monitoring - but hopefully with some more answers!!!

I guess this brings me to Mr T... Mr T who was meant to be our last baby, absolutely healthy and perfect in each and every way to show us what raising a "normal" child is like....  Well, Mr T has thrown us a HUGE curve ball....  We only just realised last week T is not speaking.  He is not babbling like a regular baby.  He has not said one word.  Mr T has had preliminary rudimental testing and it appears he may have a significant hearing loss... in fact we have been told to expect him to be declared profoundly deaf.  I can't express just how this makes us feel.  Being deaf isn't the worst thing that can happen, it's manageable.  I have a niece and 2 nephews with hearing loss (due to connexion 26) and they are gorgeous, well adjusted functioning individuals.  They are successful and you'd not know they had hearing loss if you didn't know.  I KNOW it's not a life threatening condition.  but this wait between picking up something isn't quite right to his full hearing assessment next Wednesday is starting to play with my head.  If he is profoundly deaf as expected it means we will have some significant changes to make at home.  We are already starting to introduce some AUSLAN signs into the family to try and see if we can get him communicating a little more that way.  So far he has done pretty well with grunts, crying, screaming, pulling and poking ;)  He is such an expressive little chap and he has his own way of communicating so we hadn't picked it up until now, when he is 17 months old! So I'm a whole turmoil of emotions trying to process this on top of everything else we are dealing with at the moment.  I only want the best for Toby.  We were hoping the Dr would simply say his ears are full of wax, but they are clear and the ear drum appears healthy, so it looks like it is a more structural issue rather than something easily fixed - damn! trying to not get the horse tooooo far in front of the cart but that's difficult too when we have older children asking questions and wanting to know details we just don't know yet - try telling as Aspie that we don't know everything *augh*!! 

so I guess that's it... fun and games, nothing new in some areas, other things coming up and really kicking the feet out from under us.... we have no real choice but to keep moving forward... Time will pass and we will eventually get answers... One step at a time...  and remember to *breathe*

PS:  I've not checked spelling and probably won't read back so they won't bother me...  :P  

PPS:  yes, I probably will actually read back and edit the errors in time, but for now...  deal with them!!  :P :P