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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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

Miss June

I say Miss June for a few reasons, June was a month of celebrations and commiserations.  It has been a pretty bumpy ride, and I would love to have skipped over it.  Not only have we been plodding along with all of our therapy, we snuck some botox in, got an ALL CLEAR on an MRI for little Mr Boogie, who they thought may have had a tumour pressing on his cochlear nerve.  We have done 2 weeks of serial casting, post botox too ... And then my birthday on the 24th, went to the Casino, won enough to pay off a speeding fine .. whoop whoop haha .. Yes I know speeding fine wrap me over the knuckles - haven't had one in years, honest!!

But the day after my birthday, hours before we were going to drop off some cake to my pop, Boogies GREAT Grand Poppy ... He passed away, peacefully at home.  I am not sure whether to write off June or deal with it, but the first of this month marked the day of his funeral so it kind of carried over a bit.  Boogie and his Poppy were SOUL MATES ... They had this little streak to both of them, to be honest I think it made Poppy younger, I have fond memories of him terrorising a 3 year old that could barely walk with a vacuum cleaner, with little Mr Boogie giggling his absolute ass off!!

We have spent every day since his passing talking about him, not from bringing it all up personally, but because his little soul misses him soo much already.  It has been absolutely heart breaking!! So instead he spent the week in between drawing pictures to send with him.  We went to the shops to buy some rainbow lollies to put in too.  And a magic wand so he can keep playing his tricks up over the rainbow.  The rainbow theme has significance though...

Boogie has previously lost another poppy too, when he was 3.  It was soo hard to explain to him what was going on, and as far as he knew he got to say goodbye to Poppy John who was in a "box" as he called it, which was sent up to heaven, on a RAINBOW.  But this time he understood a little bit more.  I am one for closure, death is a normal process in our lives - unfortunately.  But I didn't want to shield him from it entirely, I wanted him to be able to say goodbye!  It was one thing I didn't get to do to my Grandfather when I was younger, and it is a regret that I still have now in Adulthood.

So this time, I explained that when you die, your soul and your heart goes to heaven first, and that we then have a funeral so that we can send their body to heaven too when his family is ready to say good bye to it.  It kind of clicked with him.  He went to the viewing, and put his beautiful little gifts inside and said goodbye, he sat ever so quietly through the funeral, which for anyone who knows Boogie personally this is a HUGE achievement... We then walked behind as he was taken to the car and guard of honour as it drove towards the street.  It was at this moment that his poor little self broke down.  And it was more than heart breaking to watch.

I squeezed him sooooooooo tight!  It wasn't one of those small crocodile tears type cries, it was a gulping for air, whole body type cries.  And as I held him, chin resting on my shoulder I heard the majority of the other guests attempt to hold back their cries too!! He lost his soul mate.  His partner in crime.  He was heart broken.  And I couldn't fix it. Suddenly though he proclaimed: "So is this car going to take off now and go to heaven?"  I couldn't help but giggle, no mate the rainbow needs a runway, for him to take off first.  His innocence was back!!

I love that he looks for rainbows... To him rainbows signify his Poppy John looking out for him, and now Poppy too .. I love that it is winter and there is plenty of opportunities for him to see them at the moment.  I think it will let him have his thinking moments, and know that Both Poppies are looking out for him, Forever!  I love that he has that closure in his life and that he can have that little moment, whether it be out loud or to himself.  As much as I am a religious person, I have brought him up with light touches of it - Heaven etc, but still giving him the innocence for him to learn and decide what beliefs he will have one day when he is good and ready to understand it.  He amazes me every day with his resilience.  I can only hope he grows up to be half the man his Poppy was, he has been such a HUGE part of our lives over the years.  And his cheekiness will definitely live on in Boog! Hold your loved ones tight, you just never know when we will stumble over that rainbow! xxx 

Celebrating Milestones!!!!

This weekend marked 10 weeks since we started food therapy .... 5 sessions in all ... And can I say what an amazing experience it has been for both of us?!  Not only has he officially increased his "SAFE FOODS" from :

6 SAFE foods ..... 2 SAFE condiments & 1 SAFE drink ... 

Toooooooo  a grand total of *drum roll please* : 11 SAFE foods .. 2 SAFE condiments & 4 SAFE drinks
















Soooo absolutely OVER THE MOON with excitement ... makes it soo real putting it on the food chart ... can't wait to keep going ... gives me soo much inspiration looking at it hanging on the wall every day Compared to April this year when he was underweight weighing in at 11.2 kgs and losing every time he was sick oh and the HUGE tonsils debarkle of 2013... but potentially facing a gastric tube if we couldn't get his weight up!!!

You have no idea how incredibly proud I am of him at this point ... I think over the last week or so I have said it about 20 times a day .. especially after every meal ... We have totally turned around what is considered something soo tiny in other peoples worlds to something monumental in ours.  My Orally aversive child even tried 2 bites of watermelon and a prawn ... A PRAWN when we were out for dinner the other night ... NEVER in my wildest dreams did I ever think I would EVER see him eating a prawn or a bite of watermelon ... It may not be on his list of foods that he thinks are safe yet ... but he took a bite ... he put them in his mouth ... and he bit down on them ... And best of all ... HE DIDN'T GAG!!!  He took what he didn't want to eat out of his mouth and put it nicely back on the edge of his plate!!

It is like the whole world is amazing right now!!! He is tolerating being in the same room as stuff where he wouldn't before ... Smells aren't making him gag as much ... he is vocalising if there are things he doesn't like and removing them .. or himself from the situation .. without power chucking or having a total meltdown about it ...

Don't get me wrong though .. the meltdowns haven't ceased to exist .. they still happen over lots of sensory stuff .. multiple times a day ... BUT ... with food he is now comfortable enough to say no ... to not put it on his plate ... and still be happy enough for me to eat my "healthy" salad at the same table as him with out copping a spoonful of power vomit!!!  He is changing his world and it is starting to co-exist with mine and I couldn't ask for more!!!

BUT I have another milestone to celebrate too!!!! He can officially climb into the car by himself ... and put his arms in the seat belts by himself!!!!! Not only that ... he is starting to tolerate little pushes on a swing too - he actually asked me on saturday to push him gently on our swing set that has been sitting dormant in the backyard for nearly 2 years!!!! GOBSMACKED right?! ... Thank you sensory integration ... and thank you SOS feeding!!! In 6 months you have turned what was an extremely overwhelming world into something that day by day is becoming more manageable for him ... more liveable and much easier to interact with!!!

Can't tell you how proud I am ... I swear I have a pregnant mother type glow right now radiating out of my smile!!! It is sooo nice to report something soo positive right now while I have a big mess of a personal life hiding under the cracks!!! I hope you all have a *Happy dance* to report to me!!! I want to hear all about your successes too!!! 

Food Chaining

Woweeeeeeeeeeeee

Hasn't Christmas just come sooooo around fast?!  Going to attempt some Food chaining into our Christmas dinner this year ... Fingers crossed it goes ok ... I think the trick is I am going to have to keep everything as separate as I can .... A big Food buffet / Smorgasbord Yes that means extra bowls and dishes but ... Who cares ... If it gets him participating in all the Christmas furore!!

We are on our 5th session of food therapy this week .... And I haven't really had a chance to talk about it much with all our personal stuff going on ... So here goes ..

When we first starting S.O.S we started simple ... Everything is free of packaging and is put into a clear ziplock bag so as not to associate with any branding ... Anything liquid obviously in a clear glass bowl or jug ... We each have a wet flannel to wipe our hands or face if we don't like it on them .. and there is a bowl of warm soapy water on the table... On the first week the girls started with his top 4 favourite food items ... just to get a sense of trust with him ... So that food could be on the table in this manner and it could be safe.. It was amazing ... everything as long as it was in its ziplock bag was seen ... some of it touched ... and some of the bags even got opened and played with!! Love it!!

Our safe foods for the record have started as :

Chips - Hot or crisp variety
Chicken Nuggets
Sausages - specific kinds.
Choc milk - specific Brand
Condiments - tomato sauce & mustard but sometimes gravy.

Examples of our food play lists which obviously hardly anything has gone past our lips are : 

WEEK ONE :

1. Crinkle Cut Chips               (Safe food)

2. Chicken Nuggets                (Safe food)

3. Gravy                                (Safe food)

4. Sausage                            (Safe food)

5. Pretzel Sticks

6. Beef Jerky

7. Plain Chocolate

8. Chocolate Milk                     (Safe food)


WEEK TWO : 

1. Crinkle cut chips                   (Safe food)

2. Banana Chips 

3. Yellow jelly (jelly cups)

4. Yellow Dried fruit spear (long stick shape)
- Any fruit is fine, with the colour as close to yellow as possible.

5. Sausages                             (Safe food)

6. Bread Sticks 

7. Beef Jerky

8. Plain Chocolate                    - Licked and kissed this session

9. Choc milk (heated up)           - Sipped, licked, kissed

At this point we haven't added anything into our regular routine ... But it is on the table ... and we are playing with it SOMETIMES ... which is HUGE compared to anything he has ever done before ... I don't care if we end up with jelly on the walls as long as eventually we can get it in his stomach .. it will be all worth it.. 

Hair Washing Trauma

For Boogie his sensory integration problems, mean soooo many different things ... Loud music is now a no go ... even though he used to love it when he was little ... Food is a Big problem ... but we are hopefully starting to combat that in 5 sleeps with our first SOS feeding session - I seriously can't wait!!!! I can only imagine what the sensation is to him, like some sort of thrill ride at a carnival.... The fear in his eyes ... No matter what you say or do ... it doesn't calm him... Anyway these are some of the little things I try every time to make the whole process easier .... Make sure you are organised and have everything handy ... the quicker the trauma is over the quicker you can get back to being calm again!! 

1. Pouring the water on..... Instead of getting him to submerge his head under the water... I try to bring the water to his head... You can fill a cup or get your child to fill a bucket with water and pour it over his own head, or invest in a hand held shower head or one of those buckets with the flexi rubber sides to mould to his head ... When he's in control of the situation it seems much more calmer!! 

2. Some kids like to go face-first. Leaning forward may not be as threatening to your child as leaning backward, since he can see where he's going. Make sure you're in the bathroom or shower, and try not to stress him out by making sure he knows not to breath in the water.

3. Games make life easier!!!  Water pistols, spray bottles, squirt toys or a safe flannel/wash cloth can do the trick of wetting and rinsing, and can be fun and much less stressful... And another tip I have found (but not used - yet) is if you live where the weather's warm and your child loves running in sprinklers, lather up and let the water play do the rest.

4. Skimp on shampoo - I use the baby wash ... it is thinner and tear free ... those thicker shampoos take forever to rinse out - The quicker you can get it out the less traumatising the experience will be...  Plus some kids with Sensory Processing Disorder don't like the strong scents of some things and will add more stress to the situation... 

5. If you can keep their hair short do it... But then if they are anything like my Boogie then a trip to the hairdressers is a whole other circus of stress!!!! As lovely as long hair is on gorgeous girls ... I bet their sensory processing would have one less challenge with a Bob or something similar...

6. A wash cloth over the forehead or a hair visor can sometimes help ... If you can find a good one in a chemist/drug store grasp it with 2 hands and don't let go ... I am trying to find a good rubber one but have only been able to buy the cheap foamy types online ... Can't wait to find a good old school one like I had growing up!! 

Well that is it ... my little thought for the day ... I seriously can't wait to do a post on our upcoming SOS appointment ... You can probably hear me squealing like a giddy little school girl waiting outside the airport for One Direction from there!!! *rolls eyes* lol

Have a great week everyone  xx 

Jelly Bath!!!

On my quest for all things sensory.... I was fumbling around in Big W yesterday ... trying to find a replacement night light pillow pet for Boogie *sigh* ... with no luck might I add!!!  Anyway, we stumbled on Gelli Baff!! 

AMAZING!!!

He was a bit unsure putting his toes in at first... But from the moment he saw the box at the shops the excitement started building ... he was ripping his clothes off before we had even put the jelly crystal stuff in the water lol 

5 mins is a LONG time for a 5 year old to wait .... So instead he jumped into the shower to wash his hair while we waited ... BIG MISTAKE!!! Because his hair ended up full of Baff Gelli anyway lol

Measurements have got to be spot on 40 litres... I used a Jug as I have a really really big bath ... Then sprinkle the step 1 gelli powder evenly ... and leave for 5 mins to start changing ... The Gelli held the warmth of the water for at least 45 mins ... 

Instructions

Thickening up slowly

Sprinkling the Powder

Is it time yet?????????

Amazing!!!! 

I wish though that I had started it earlier in the day so he could have had some more fun ... but still recovering from his serious chest infection it was just not worth getting sick over again ... The price was about $8 for the 1 bath with no left overs... which when you think about it is a pretty expensive bath for a kid ... But totally worth it ... that was the ONLY downside to the afternoon!!!

I was actually surprised he took to it as well as he did ... obviously he was submerged in the GOO ... and was trying to wipe it off his hands onto the rest of him which was covered in goo every minute or so ... BUT ... he stayed in there!!! One sensory experience we will definitely HAVE TO repeat!!! 

On to the boring cleaning up phase ... You can supposedly put the goodbye powder in while they are in the bath ... but once it started losing its goo-ness ... He started losing interest (I know .. but there really isn't any other way to describe it lol)

So it was into the shower to clean the hair ... AGAIN!!! Anyway ... Hope you guys have as much fun sharing our icky sticky messy bath as we did!! xx