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....  

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**

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.

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: 
• Lunch - Ham Hock Soup
• Dinner - Beef Schnitzel, Veg and Gravy
•  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