Thursday, April 6, 2017

Ode to Mealtime Hostage

I'm feeling a little emotional today... I'm not usually but it has been an emotional week!!!  So I thought I'd share some positives we've been working on... Especially to do with eating!!!! At home we do feeding therapy and follow the DOR -Division Of Responsibility and this is how it's Success has changed things in our world ...

DOR SUCCESS TO ME : 
Is my child being able to say to me, I can't eat that mum it : looks/smells/tastes weird or the colour doesn't appeal to me and not have a melt down because it's in the house.
Being able to sit at the table and eat a salad on my plate while my son happily munches away on his safe food.

Watching him be able to pick an olive or tomato out of the share salad bowl on the table because they are his safe foods and he knows it has touched the lettuce and he is calm about it.
DOR Success to me is being able to go out for a meal, and if my child isn't keen on ordering anything off the menu, I can still take my time eating and conversing with friends/family while he happily sits at the table eating a safe snack from my bag or colouring in - knowing that on the way home I'll pull through the drive through and buy him a cheeseburger because it's okay and food is food.
It's my child knowing when they dribble crap at school about "healthy eating" that he is comfortable at the age of 9 to say food is food, it doesn't make you healthy and give a cheeky little eye roll. Or when there is another 10 millionth advert about dieting and healthy food on tv and he laughs and changes channel temporarily.
It's my child reaching across the table and asking if he can try/sniff/lick/touch something off my plate. It's not an annoying habit or a waste... it actually sets off invisible fireworks inside my brain (and celebratory tears of happiness after he is in bed)
DOR Success to me is us sitting opposite each other on the table smiling and conversing while 10 foreign objects/food sit on the table between us that I know he would never have looked at or been in the same room together 5 years ago before we started our DOR journey.
It's knowing that I'm not crazy like everyone told me I was. My child isn't playing me. His fear of food isn't fake or a game to control anything. It's him being HIM! And I accept that Wholly!!! I embrace it... It is HIS NORMAL!! And that's okay.
It took me a LONG time to get to that point. Both our mental health was suffering from the "drama" of it all! So now we eat our way. And without the beautiful lady from Mealtime Hostage's support ... I don't know if we ever would have come out on the other end. Without her support and the support of peers in the group. We would still be stuck in a crazy land type black hole .
Know that if you want DOR to work ... You need to throw yourself in. Forget what everyone else is saying and walk to your own beat. Every DOR journey is different as is every child that needs to be on that path. But it's changed our life... I don't know what I would have done without it 5 years has gotten us to these photo's and without it I'm pretty sure I'd be in a padded cell with the key thrown away somewhere ... and for that I am eternally grateful!!!

DMMC xox




Our Food Chart circa 2012
Our Food Chart 2017 (Today)


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Monday, November 23, 2015

Hey ... it's me ... I know what you're thinking!!

Hey ... it's me ... I know what you're thinking!! Where have I been right?!  Well we're here .. living .. as best we can ... it's been quiet .. not because I don't want to share my thoughts with you ... But because I have been soo busy busy busy that I haven't had time to scratch my head let alone put the proverbial pen to paper.

Mind you though there has been lots to write about ... but some things are best kept inside - a little bit from column - you can't really say that on social media because it would be considered defamatory :P and a little bit from column dammit I can't give out details like that cos they are too personal and no one wants to hear about what is causing you anxiety!!

But we are here... kicking along .... Botox coming up though which is always a bit of fun mid school term trying to keep him healthy while there is a chicken pox/whooping cough/mumps/flu epidemic going on ... But you know whatever ...

We've had Monster Trucks which he loved ... Mr Maker ... Walking with Dinosaurs ... and a plethora of other events which we have attended and LOVED ... And I must say the headphones that we bought for his starlight wish earlier in the year have come in handy ... Monster Trucks was CRAZY loud!!!

Oh and to boot I actually completed my New Years Resolution too ... My goal was to spend some me time ... by reading some books ... it came about because I had not picked up a NON therapy related book in years.  But I did it ... My resolution was 6 books one every 2 months and I've read 10 .. are you proud?! I am :P

On that note .. back to doing some living ... I'd say I promise to visit here more often .. but I will really try ... I just don't like making promises I can't keep .. there are way too many of those broken ones floating out and about the world ...

Until next time

DMMC xx 

Where

Sunday, March 1, 2015

Soundwave Starlight Wish


So a while back .... we tried tweeting and getting the attention of Godsmack and their managers Oh and Soundwave organisers every year to try via their fb page to get Godsmack to Australia ... Because the chances of getting Boogie to the US to watch a show were pretty slim to none... And in turn found out I am USELESS at the world of twitter lol ..

Boogie has been an avid Listener of their music since before he could crawl.  Him and his dad would watch their Changes dvd ... youtube clips and he would always mosh out ..... Nawww my little headbanger .... *Insert mummy smooshy face HERE*

As the years have gone on ... His love of Godsmack AND their music has only become more solid .... Rock solid some would say ... Get it .. Yep I am funny even on a Monday morning!! 


I have sooo many fond memories of Boogie in ICU with his Godsmack DVD on in the background .. or playing it on the Ipod ... And then suddenly last year ... BAM our prayers were answered!!!! Godsmack was coming to AUSTRALIA ... albeit the other side of the country to us as we are in Western Aus. but it was closer than they had ever been to us before and they were playing an All ages gig!!! Whoop whoop!!

As soon as tickets went on presale ... they were bought!!! So we started twittering unsuccessfully (mostly due to my unsavvy twitter type fail - Yes I am not a tech net savvy mummy .. alas) to organise a meet and greet!! :)

Anyway long story short Boogies therapists asked if they could nominate him for a Starlight Wish!!! .. Of course I said YES!! .. And the AMAZING magical fairies at Starlight went to work!!!

A few months after buying the tickets though a friend informed me that 

Soundwave had been changed from All ages to 12+ which was the original concept .. needless to say for a short couple of days after finding out we were DEVASTATED ... But after an email to the Soundwave organisers ... yes a little bit of angst on my part... I received an email back ... It was like the Gods of Rock had sent us an angel wrapped in digital format all the way to my humble little email address ...

I was GODSMACKED ... GOBSMACKED!!!!!

It was all set!!! Our anxious wait lasted for about 5 months until the day of the trip finally turned up!!!! ... Here we were .. Boarding a plane to the other side of the country ... to attend the un-attendable ... It was like all our magical fairies had aligned to created this AMAZING feat!!

I have to be honest though .. I was expecting a 1 min meet and greet ... shake hands .. get a signature watch the show kind of deal ... Which was better than anything we could have ever pulled off ..... But what Boogie received was far more!!!!!!!!!! For a start the Soundwave rock fairies - yes they exist (thanks Troy & Luke - our personal soundwave guide on the day) Organised a meet and greet with Sully & Shannon after the show for a few mins (as they had to fly off to Adelaide for the next show - Busy busy busy festival and soo grateful!!)

He got to walk on stage with the Band .... 

Getting Ready to walk onstage with GODSMACK!


Standing side stage watching the SHOW!!! 


Then he got to MEET Shannon and Sullyyyyyyyyyy!!!!!! Oh and tell Shannon Larkin that he is a better drummer than Dave Grohl lol ... he seemed to have a good chuckle over that hehe

Shannonnnnnnnn!!!! 

Meeting Sully for the first time!




















You seriously couldn't wipe the smile off his dial ( -yes cliche) by the end of the day...

But to boot he also had the Starlight wish to unfold...

So on Tuesday night we were picked up from the hotel by Corporate Cars Australia .... in a private car and taken to the FORUM in Melbourne ... We met with Godsmacks manager who organised special seats for us as it was an 18+ concert venue .... Boogie was getting high fives off random fellow concert goers ... the atmosphere was AMAZING!!!

And then he got the call and we were all escorted backstage with our Starlight wish fairy to meet the band!!! Boogie chatted with them about EVERYTHING .. his music that he likes to make .. Drums of course ... he got to sing with Sully ... Got a SIGNED drum head by all the guys and literally spent half an hour in their company just chatting about Stuff ... starwars .. transformers ... the koalas and baby kangaroos that the guys were excited to go meet ... And when they going to get ready for the show he got to go back to his seat watch some PappaRoach ... and wait for the EVENT OF A LIFETIME!!!!






















After the Show Boogie got invited up on stage to play with the Boys drumkits ... (I will link the Youtube video below) He was sooooooooooooo gentle ... nothing like he would be at home lol ... I have the dented drum heads to prove my point!!!!

It was the wish of a lifetime for my little man ... And still a week later you can't take that grin off his little face!!!! Thanks sooooooooo much to Troy and Luke from Soundwave ... Everyone at Starlight Australia .... And the biggest of thank you to Godsmack and all of their crew ... Each and every single one of you made it the most amazing experience for him!!!! Thank you a million times over!!!! Hopefully you boys can make it to perth eventually and visit Bon Scotts resting place that we were talking about!!




Thanks for sharing our adventure with us
xXx DMMC & Boogie 





Thursday, January 22, 2015

Board Game Bonanza!!!

So you all know I am a little bit old school when it comes to parenting .... Boogie has an i-pad ... but I HATE when he uses it ... he gets all grumpy ... So I don't love too much screen time ... Also because whenever he used to go to his dads.... that is all he used to get ... an illuminating glorified babysitter ... And well that just URKS THE CRAP OUT OF ME!

But I Loveeeeeeeeeeeeeeeeeeeeeee playing board games with him ... I can boost his confidence a little ... and then not let him win a couple when I know he is turning into a sore winner ... and trust me .... He is a sore winner in all of his splendiforous glory!!
"Ha haaaaaaaa mum ... you lose .. you're a loser ... I won ... it's all mine."
Yeah I don't think so kiddo!!!

Every year a couple more games sneak into the collection ... and I am dreading what is going to happen next .... I know my challenge for this holidays is to clean out the hallway cupboard to attempt to house them all ... I mean the only thing in my hall way cupboard is STUFF ... the kind of stuff that doesn't have a place ... Christmas decorations ... Presents I have accumulated for just incase ... My mum used to do it ... don't judge me .. I'm not a real hoarder :P .... And I can see myself putting it all off until the Christmas tree comes down cos obviously the decorations have first priority ... spent soooo much on them over the years that they just have to!! ...

Our Christmas tree is special... There is just something sooo amazing about the festive season ... I don't know if it is the fact that while everyone calls it the busy season .. I call it off season ... Everything .. Therapy .. Specialists .. Paediatricians offices etc ... they all close down over the Christmas holidays ... which leaves me with NOTHING ... Yayyyyyyyyyyyy Nothing!! .. Who ever thought I would be in my low *cough* 30's celebrating nothingness ...  Me ... that's who!!

Back to the Christmas tree ... yep got side tracked as per usual ... Anyway our Christmas Tree every year anyone who is staying in the house ... puppies/kitties included gets a special bauble dedicated to them ... We make the pilgrimage to Myers ... (no this isn't a shameless plug) we do the whole Santa photo tradition ... and we pick out a special glass bauble in either silver... blues or teal ... I am now getting to the point where no 2 baubles are the same ... and I LOVE IT!!! The first few years Boog got to pick out the bauble for some reason ... red was too eye catching for him ... so hidden towards the sides of the tree ... tucked in are a bright red train and a couple of other bright red ornaments ... Gotta love him :P

Oh my gosh how far off board games did I get!!!! *Smacks herself on the hand*  Sooooooo I couldn't even remember what board games I had snuck into the collection come Christmas time because I already wrapped them ... But I knew that they weren't going to fit where they are all precariously balancing on top of each other already... like a giant stack of Jenga tiles :P But I do love a bit of monopoly myself ... And I have a killer collection of simpsons games - the only one I am missing that has been released is Simpsons game of life *shines knuckles* ... Boog loves his hungry hippos annnnnnnnd the special rock em sock em robots I got for him 2 Christmases ago now... not really sure how I can top that .... Oh right .. yes I do .. A new drum kit hehe ..

He asked Santa for an electric guitar for Christmas and for mummy to feel better for Christmas ... I can openly admit I shed a tear when I was head hunted by an elf through Myers to be told that was his first wish!! I think I've done well!! Anyways .. What did your little elves ask for and receive this year? (well technically last year now - arrrrrrgh) There is such a wide variety of things on the market nowadays that is is sooooooo easy not to double up!!! I would love to hear your little munchkins top 5 ... Pretty please?!

 XoX DMMC

Wednesday, October 15, 2014

Sensory Overload

Every time I pack a bag for Boogie... Whether it be a sleep over ... A weekend away with family .. The dreaded holiday.. I don't imagine an easy going relaxing time ... The moment someone says let's do it ... the blood drains from my face ... and my brain goes into over drive!  People tell me to relax ... it will be fun .. enjoy it .... Clearly they have never experienced the dilemma that is being the over prepared parent of a sensory child.

From the moment someone says lock it in .. A thousand things are running through my mind ... To avoid a meltdown of sorts ... I need to pack EVERYTHING known to man that clicks into our sensory puzzle ... Short of the kitchen sink .... Cos Boogie is aversive to water ... not the drinking kind ... Just the washing and splashing kind..

Some days I seriously think running a marathon would be easier than what is running through my brain.. For every stimulant .. there is a subsequent reaction unfortunately and I need to be prepared ... Sometimes it means that Boogies baggage .. and I mean the literal kind (although the emotional sort is never far behind) .. Literally outweighs everything I need in list of things to organise... Oh and pack

At the moment.. Chewy necklaces are right up the top of the list .. it goes to school .. it goes to therapy .. it goes EVERYWHERE!!!! And there is no time to be in short supply ... they look frazzled come week 2 of hanging around that dainty little neck .. Actually frazzled is not the right word .. I think maybe chewed and gnawed to perfection ... Mr Robot is usually missing a leg or 2 .. and hanging vicariously off his safety clasp .. which then gets replaced with a new rubber safety clasp ... Oh the pain of re-threading rubber through a thin rubber tube of medical grade rubber... *Le-Sigh*

JabJab is definitely the next on the list ... sometimes ... if it is a small appointment .. or just a trip to the shops ... you can persuade Boogie to bring one of the baby JabJabs ... Yes .. We have a whole family lol ... BUT there are conditions ... JabJab's tag is often chewed or rubbed to perfection (we roll it between our fingers ... or around in little circles on our nose when we are stressed out)... so it has to be a whole JabJab .. no holes with stuffing poking out ... Bell intact (it is a rattle toy) AND a perfect REAL tag ... can't be a pretend tag that mummy has painstakingly sewed on from some other teddy or a little piece of ribbon or satin .. No no ... It has to be perfect ... slightly rubbed .. and Authentic!!

JabJab is well travelled .. he has seen the sights ... been to Disneyland in Hong Kong .. Something admirable for a teddy of sorts to have achieved in a life time!  He plays golf .. Watches movies ... and is a Huge fan of popcorn .. I do digress though .. I guess I could do a whole post on the adventures of JabJab - In the words of Gru from 'despicable me'  "LIGHT BULBBBB."


Get back on track .. Get back on track hehe  .. See what I mean .. my brain goes of in spirals ... flicking in every direction ...

We need to take wet wipes ... Wet wipes are essential ... because I can't just splash water over his face or use a flannel that is a big no no ... even a wet wipe (not the huggies ones cos they are too thick) has to be wrung out so it is not drippy and yucky.  


We NEED the Ipad & earphones (educational games oh and his favourite rock band concert - obviously "Godsmack" - don't ask!!) ... things can be too loud .. and sometimes need blocking out .. he finds a nice strong rock beat comforting .. Go figure

Next comes a blankey ... Has to be fluffy and soft ... and MUST come complete with a tag of its own too....

We have a light up pillow pet that comes for sleep overs and trips ... Because we don't like the dark ... It puts a star lit sky silhouette on the ceiling ...

Snacks ... Safe foods have to be planned out ... He needs to have access to things that are safe in his mind... so that he has options .. Whether it be in the car on the drive ... or when we get there ... or a routine before bed ... the drink bottle because with his CP his hands are way too unsteady for a cup ..

Oh and the clothes that have to be packed ... Oh lordy ... Plus leg splints ... Shoes that fit over leg splints ... Special socks long enough for legs splits ..... shoe inserts ... the list goes on and on!!! And to be honest I have probably omitted quite a few things for the sake of my brain isn't working this morning ... (Yay for first day back at school foggy brain hehe)

I can honestly say I envy (not in a nasty way just in a longing for normal kind of way)... every single mum that just gets to grab her handbag a couple of juice boxes for the kids and go out ... not have to consider the time you visit a bowling alley to have some sort of normality because it might be too loud ... I think it actually makes me a little OCD ticking off all those checklists in my head ... But then ... I wouldn't really change his world ... We manage ... ticking one box at a time!!

Hope you all have a great week  DMMC x




Hospital Visits and Holidays take ALOT of planning!! 




Monday, October 6, 2014

Soup ...

Yep ... it's been a while ... I'll say sorry ... but I really haven't had too much time to think of anything but us recently ... You know when people talk about being crazy CRAZY busy?! ... Well that's us ... I recently have only been functioning on 50% .. thanks to my amazing support system we have gotten through relatively unscathed!! ..

I found out that I either have a benign tumour or a cyst in the back of my head which is causing a whole heap of havoc ... So on top of our normal crazy schedule .. I have had scans .. and specialist appointments for myself to boot .. and that is without even mentioning the days I have had extreme vertigo and migraines ... *Yay*

So I thought I would slip back in with something a little bit easy.. that I have been meaning to do for a while now :D Hope you'll forgive me xx

Sooooooooooo one of Boogies new found things ... Is dipping Toast or VERY CRUSTY bread into soup ... He gets a little bit of the flavour .. without toooooo much of the texture ...

The go to favourite for the last few weeks has been chicken and sweet corn ... I make it relatively from scratch .. and let me tell you it is probably one of the most fiddly soups I have EVER had to deal with .. Apart from our family "Brodo" recipe .. which drives me CRAZY picking out the bones *URGH*

Anyway thought I would share it a little cos it is soooo damn yummy .. I have been storing it in the freezer without the rice ... and has been making life sooo much easier on a busy day all I have to do is steam some rice in the rice cooker which I do while doing the whole bath routine :D .. Can't really sneak too many veggies etc into this one .. but it tastes sooo damn good!!!

Here goes :

2 litres* chicken stock (You can cheat & use stock cubes, or you can pre-make the real stuff mmm)
4 chicken breast fillets
Light soy sauce
4 teaspoons finely grated fresh ginger
3 Cloves minced/finely chopped Garlic
Cornflour
60ml (1/4 cup) water
2 x 420g can creamed corn
2 x 300g can corn kernels, rinsed, drained
4 egg whites
1 teaspoon sesame oil (for each bowl at the end)
6 green spring onions, thinly sliced diagonally
Salt & freshly ground black pepper
Sambal/Chilli Paste for taste on the top

Start with your Stock and chicken in a large saucepan and bring to the boil over high heat. Reduce heat to low and simmer for 30 minutes or until chicken is cooked through. 

Transfer chicken to a heatproof bowl. Set aside for 5 minutes to cool slightly. Finely shred with a fork against the chicken grain is easier ... 

Add the garlic and ginger to the pot mixture. Place the cornflour in a small bowl and gradually stir in the soy sauce until it makes a smooth paste and is combined. Gradually stir the cornflour mixture into the pot. You may need to do it a couple of times to get it thick enough or to your liking... Stir for 2 minutes or until the mixture thickens slightly.

Add the chicken back in with the creamed corn, corn and cook, stirring occasionally, for 2 minutes or until hot.... 


Use a fork to whisk the egg whites in a small bowl.  Slowly pour it bit by bit into the soup .. you need to use a chop stick and wisp them through so you don't end up with BIG clumps of egg ... Cook for 2 minutes or until white ribbons swirl though the soup. Remove from heat.

Apart from the rice (which I do in a rice cooker so takes me 2 seconds to do while everything else is going on ... if you leave that and the chicken in the stock for a while ... you don't really need to do anything except for the last few ingredients Takes about 10 mins of prep .. and 10 mins to cook once your chicken is ready ... 

I serve it over steamed rice ... cos that is how I have it at the local chinese shop for lunch and I LOVEEEEE it that way lol But I also add some baby spinach to my bowl too between the rice and soup layer!! Then on top a drizzle of sesame oil ... Salt and Pepper to taste ... Spring onions and some of the chilli or sambal..

It takes a little while, but it is totally worth the effort!!!! YUM!





Just for the record this is MY bowl lol ... there is no way little Mr sensory would have something green in his bowl hehe x 



Monday, July 7, 2014

Weird Experiments!!

Introduced our SOS therapist to our Zoku today  lol She had never seen one before ... :D 

Our food therapy list today was : 

Plain Crisps 

Purple Beetroot Crisps

Purple Jelly - Natural (Grape - No red food colour due to allergy)

Purple Lolly snakes (Natural grape)

Yellow Lolly Snakes (Natural pineapple)

Cheese blocks for grating (Yellow grass for our yellow snakes to hide in)

Tinned pineapple pieces Frozen overnight

Milk

(Milk and frozen pineapple put into a blender)


Soooooo ... as per usual we worked through our foods .. blah blah blah .. nothing really exciting today .. the usual gagging etc etc ... Seriously .. who's child GAGS on lollies ... MINE!! And probably a few of yours too if you're reading this ... And then .. We brought out the ZOKU!!

He was down to the last few ingredients and she let him blend up the last two ingredients to have an "Experiment with" ... He had a sip .. yep usual gagging ... And then put them into the Zoku ... although just before it went in he did mix in some left over purple jelly into his .... But it worked!!!! (He is big into experiments so got to watch it go hard etc while we were kissing and blowing all of the left over foods into the bin)


It took me a whole heap of effort to try and remove it ... and then I read the instructions .... YES temporarily ... I thought like a man!!!! Who wouldn't think that an icy pole would come straight out of an icy pole machine?!?!?! Me that's who!! Turns out the stick has got to go in first before you stick the chunky pineapple pieces in LOLLL

Then ... BAM ... it came out!!! Wooohoooo ... And then he ate it!!!!!!!!!!!!!!! It was rock solid the whole time ... didn't last long enough to melt and attempt some of the sensory problems!!! But I don't care!!! He asked if he can try some watermelon juice in it tomorrow because he likes the smell of it... Can't wait!! Definitely gotta try it again ...

I think at this point the only thing that will make our eating journey easier is a Thermo mix ... I am saving every penny as I go ... Hopefully I will have one before the end of the year .... I've seen them in action now .. and I can't for one second say I don't have that pang of jealousy that comes with something awesome in the hands of someone else ... Like that kid at the play ground who is the only one who's mum won't buy him an ice cream from the ice cream truck! lol COME ON you know what I am talking about!!

Things are going well ... without pressure we are slowly building on things ... They don't always get eaten again .. But any try at this point is a WINNER winner chicken dinner!!!

LOVE therapy .. it is changing our world one day at a time!!!!

DMMC
 xxx