Wednesday, July 31, 2013

Mad Science!!!

So.... I thought I had better do a little bit of catch up from our crazy school holidays ... we did heaps of activities ... I think Boogies favourite was the science experiments we fitted in and around appointments!!!

This one was pretty cheap to do .. good for learning colours and the colour wheel ... I got the idea from Pintrest ... the Mecca for creative mummies ...

You will need : 


*9 Plastic clear cups ...
*Red, Blue & Yellow food colouring ... 

(yes we are allergic but he didn't touch or eat it!!)
*A Roll of paper towel... 
(the cheap not so absorbent stuff works quicker)
*Tap Water ...

That is it ... seriously .. how cheap is that activity!!! 


You can do one at a time .. or you can chain link the colours in a circle...  However we did one at a time to waste some time :P
Step 1 : Lay out 3 cups in a row .... 2 cups with food colouring and the one in the middle empty ... So you can capture the food dye in the middle.. We started with the Yellow and Blue combination!!

Step 2 : Then roll 3 pieces of Paper towel without tearing long ways to make a nice long sausage ... and Make for lack of a better description McDonalds Golden arches :P 

Step 3 : Dip either side of the "McDonalds Sausage" in Boogies words ... in the food colouring cups and the middle point in the empty cup like we have shown you below ... BUT ... scrunch the arches up so they sit nice and low in the cup ... otherwise it will take a LONGGGGGGGG time for the liquid to come up the paper towel .. (you will note we shortened them in subsequent pictures lol)




Step 4 : WAIT ... WAIT ... and then WAIT some more ... 




We have GREEN ... YAY!!!! 


Step 5 .... REPEAT with the other primary colours .... If your game and have ALOT of time .. you can experiment with the secondary colours too :) I have thrown in a colour wheel for you too  ... ENJOY!!!









Sunday, July 28, 2013

Bad Week!!

I know I have been a bad girl this week and haven't shared all the things I said I would .... But you will have to excuse me :P ... Things got a bit crazy!!! 14 appointments in 15 days ... school holiday activities and stick 5 days of school and a few melt downs in there too!!! Sometimes I feel a bit guilty for not getting things done that I probably should... But lets face it ... there are only sooo many hours in a day ... and there isn't time to do everything unfortunately!! 

My number one biggest guilt ... Is not getting all the extra therapy done that we are "prescribed" so to speak from every single therapist ... If I was to do EVERYTHING that we are supposed to do every day .. Boogie would not be attending school or sleeping ... *sigh* there is just simply too much .. and there has to be a line where I say no .. you can go and play ... on top of all his Ipad work he does ... and school too!!! My poor house gets neglected on a daily basis .. I have a list of things I need to do around the house .. that I have been to Bunnings to buy ... but clearly have put it off .. and off .. and off .. cos there is just no time some days!! 

I feel guilty that my mum was on every single little board ... volunteered on a regular basis .. be it at school .. the canteen that she subsequently ended up working in for a good 10+ years ... and was a Brownie leader ... I don't know how between having 3 of us kids ... and doing all the handyman and mummy stuff around the house that she got it all done cos Dad was off working ... to be honest ... it is a hard expectation to live up to (not that I don't love you mum :P) lol

I am sooo grateful for all those time saving routines in my life ... My slow cooker in winter ... My steamer and rice cooker in summer :P and my mum for when I just need that 1 night to not think ... cuddle up in my bed ... and just SLEEP ... it doesn't happen often but she knows how much I appreciate it!!! And Boogie loves spending time with my mum and her partner ... it is like a mini holiday/break from his routine ...

I love that I can call my mum when ever I need .. and she is reassurance ... especially after having a week like last week!! A confronting week I guess ... I HATE going to new therapists .. and having to start from scratch ... telling them every little thing ... them probing me .. making me feel like I am the reason .. my pregnancy was the reason Boogie has CP ... and all his other problems ... It makes me want to wrap myself up in a doona and eat ice cream from sunrise to sundown ... I feel bone chilling GUILT! And even though I know none of it is my fault ... there is always that twinge in your heart ... trying to figure out if you would have done something differently would it all be the same ...

My mums catchphrase to me .. whenever I am having a BAD WEEK .. is "God wouldn't have given you anything you can't handle" ... (Yes I grew up catholic ... I believe in a greater being - I just don't taint my posts with it all :P ) And I know it is true ... I know I can handle it ... there may be break downs .. there may be a bucket full of tantrums ... pain .. and sorrow .... But I can handle it all ... Just give me a tub of ice-cream and I am good to go :P (my poor waistline) We all have stress handling mechanisms ... What are yours?






Monday, July 22, 2013

In His Eyes

Have you ever just sat there and stared into your little ones eyes and just wondered ... If everything you are doing is enough ... If they are happy enough ... If they are going to grow up to be a good well balanced soul??

I guess like every other parent ... I do ... But I have been finding myself doing it more and more lately ... As I push him from one therapist to the next... throwing him into situations and extra curricular therapy that most kids wouldn't even blink an eye at  .... Am I crossing over the line of normality?? Is what I am pushing him into .. making him happy ... will it help him later in life ... IS IT ALL WORTH IT?? 

I have gone from literally forcing food between those sweet little lips ... to letting someone else try and do it for me ... not the force part obviously ... the gentle persuasion ... and so far we haven't had too much luck ... The only positive gesture was taking a bite of corn off a corn cob which hasn't since been repeated... We are still on our limited safe foods ... We are still LIMITED .. I know we have only been doing it for a short time ... but where is that line where I say STOP ... where I say enough is enough ... I am pushing it too far ... I am positively forcing him to do something that isn't working and isn't going to make a difference in his life???

As I stare into those 2 little blue eyes ... That smile ... That cry ... That show fear ... That need ... That want ... That look for reassurance ... His little mouth that says NO ... That screams no ... That tells me it HURTS ... His arms that grip sooo tight into me when they are stretching his sore weak little muscles ... His fingers and nails that rip into me when he he is afraid and doesn't want to be let go ...

You have never experienced heart break ... until you have looked at the fear in your own flesh and bloods eyes ... the panic on their face as they are held down to have yet another anaesthetic mask forced over their face for yet another procedure ... The pure torture of subjecting him to operations and physio ... The botox ... the serial casting ... the stretches every morning and every afternoon ... the medicines that keep him alive ...

There is no easy way to approach any of this... from the moment of his birth ... our life changed ... destined to be irrevocably intense ... a hard road for both of us ... our shared experiences of his pain ... my heart break ... and the un-waning need to make sure it is all ok ... There are moments ... like this one ... where I retreat into tears ... into the need and want to roll him up in a 24 metres of bubble wrap ... carefully carving out holes for his arms .. legs and head ... I feel like I am trying to create a polar opposite life experience of what I think he feels ... Trying to make everything fun ... and achievable ... It is hard to know where is that line to push him to ... to know that he just can't do it!!

I know to a certain point everyone in my family and close friends .. sugar coats something for him.... Some more than others ... It's ok .. It's cos they care!!! He is not treated by them, like a normal little boy lol ... He is treated (especially by my gorgeous nan and mum) .. like the sun shines out of his bum ... cos in their eyes he can do NO wrong :P .. Generally they don't see the melt downs ... the pain ... the heart ache .... and the attitude ... They aren't at the appointments ... they don't have to see the difference between him angry and him in pain .. they just get happy Boogie... Happy meltdown free not tearing into my skin Boogie!!

But not every meltdown is Sensory related ... We have normal 5 year old melt downs too!!! Where he pushes and pushes and PUSHES until I myself have a mini meltdown of my very own... 
But my meltdowns ... tired, stressed, emotional ones anyway ... seem to be occurring more and more .. The more I push him ... the more I feel guilt!!  And guilt brings tears ... And tonight ... I am bawling my eyes out .. I LONG to feel normal again ... to have no worries ... no guilt ... To be HAPPY ... not that I am not happy ... But I remember what carefree is ... and I wish he could know that kind of normal too!!!

What is normal in those eyes anyway?! In his eyes ... I long to know!! 






Thursday, July 18, 2013

Food Therapy!!

Food therapy .. from a mummy stand point as not as glorious as it sounds ... I NOW KNOW ... and I most certainly speak from experience!!!! ... As I sit here scrubbing the jelly ... cream and choc drops off my wall!!! All I can say is THANK YOU Dulux Wash and Wear ;) ... 

You have never really been soooo desperate to know the torture for your child to eat normal kiddy food until you have been on your hands and knees peeling slimy half chewed snakes covered in cream off your wood floors.. With a smile on your face...

But it was totally worth it ... It was sooo hard not to frown as an OCD mummy when there was cream whizzing past my head at speed only known by those who watch star trek!! But like I said .. WORTH EVERY SECOND!!! Today ... we kissed a snake covered in whipped cream .. after spraying it from the can at mummy and 2 therapists faces ... like spiderman with the spider webs but totally not as cool ... This was HUGEEEEEEEEEEEE...

THANK YOU therapists!!!

THANK YOU Boogie!!!  (for going along with it and trying) 


THANK YOU Dulux Wash and Wear!!!

and THANK YOU Aeroplane Jelly for being soo awesomely cool and not staining my wood floors and tiles!!!

Back to the Cleaning ... Unless anyone knows where I can get a fairy?? You know the magical cleaning variety?! .. ANYONE?? .... Bummer :(  ... Have a good night xx 






Tuesday, July 16, 2013

Theraputty!!

So I have been slowly stumbling on different recipes to make Theraputty!!! And even though they may not be perfect ... (it goes a bit stiff - a bit too quick for my liking) It is doing the job .. until the real Theraputty arrives in the post that is...

So we spent a day doing science experiments & crazy stuff!!! Here is some of our FUN!!!  Anyway .. here is the recipe .... so far soo good ... 




Theraputty Ingredients
2 cups of white glue (craft glue/pva etc)
1 cup of liquid starch (Can be powdered stuff and mix it up / some IGA stores sell it)
Food Colouring (whatever colour your heart desires)

Instructions:


In a large mixing bowl, pour 1 cup of glue followed by by 1/2 cup of starch. Mix ingredients thoroughly. 

Add the remaining glue, liquid starch and food colouring if you want a specific color. Let the mixture dry for approximately 15 to 20 minutes so that it becomes workable. 

After the time has passed, the mixture should still feel wet. Add more glue or cornstarch as needed until you get the right texture. 

Once the therapy putty is workable, start to pull the mixture away from your body in long strands. Repeat this process several times. 

When the putty begins to pop and snap like silly putty (make farting noises - as described by boogie), you have reached the proper texture. Store in an airtight container so as not to dry it out!!!  



Basically it is just one of thousands of recipes that I stumbled across on google ... they all seem to be pretty similar .. But this is the consistency that worked for us!! ENJOY xx 




Saturday, July 13, 2013

Judged ....

Wow .. So I had an online article brought to my attention today ... of which I posted to our facebook page ... and my god ... it made my BLOOD BOIL ... no seriously ... I think people could hear me 2 suburbs over hurling abuse at the computer screen..  It is amazing how naive some people really can be .. Fair enough the author of the article was just trying to get a rise out of both sides of the fence ... however .. they basically accused a mother of child abuse .. because her daughter refused to eat anything but chicken nuggets from the age of 2 ...

Now I am sorry ... But I have been in a VERY SIMILAR (not as limited thank christ) situation since Boogie was born ... He has Sensory processing disorder ... and more importantly is a victim of his own brain and fear in which he can't put certain things in his mouth without gagging and throwing them up!!! This is not bad parenting on my part ... It is miss diagnosis on the part of some of our earlier practitioners and practises implemented during his treatments.... Who have since brushed me off and told me it was all in my head ... But to think .. reading the comments this article provoked ... that if someone had a snapshot of my little man's life ... that they would JUDGE ME!!! And consider me to be rendering CHILD ABUSE to my own child .. made me feel sick to the stomach ... for both the parent and the child who had been singled out... And for the thought that I would be judged the exact same way by someone who knows nothing of our life!!!

I do understand that the write up seemed to have a lot missing in regards to information on their particular case.. And you have got to love media outlets and their omissions ... but my goodness ... Accusing the poor woman of CHILD ABUSE??? really?? *sigh* ... Do we judge people that have anorexia?? .. Should we just let them starve themselves? Because some kids with Oral Aversion .. Sensory Processing Disorder  and other feeding difficulties, don't choose to eat this way ... they are imprisoned by it!!!

So I thought .. for those out there .. who actually seek the education, that the trolls judging the poor mother clearly lack ... here it is ... 


Some of the information and our personal perspective on Sensory Oral Aversion :

Oral Aversion is what is experienced when a child is reluctant or refuses to eat or put stuff in their mouth.  If a child has been tube fed for a long time due to prematurity or other illnesses it may also be a root cause of oral aversion. 


So far we have had ALOT of help through a speech-therapist and occupational therapists, through them Boogie has received treatment for his negative associations with food - which has seen him come from being limited to 3 foods to 10-15 (however less when he is sick or in hospital - the root of all evil).  In other cases though, children may strongly dislike the texture of certain foods (our case as well) which involves therapy that decreases his defensiveness so that he or she may feed to receive more calories.

Things you need to know : 

Premature Infants (Just like Boogie) have an increased risk of having oral aversion both when they are breastfeeding and when they mature to solid foods. (Of which ours appeared from birth and didn't leave)


The Symptoms of Oral Aversion are Crying when near or exposed to certain foods,  Gagging,  Vomiting and dry retching, Turning the head away from food or refusing to open up their mouth and Generally being distracted or self distracting when near food.

There are soo many different reasons why babies and children have this oral aversion.  Some cases may be due to illness, trauma and there is often an underlying condition that once treated leaves the child still being orally defensive towards food.  Occupational Therapists and Speech Therapists are usually able to do a thorough evaluation of the situation and rule out any factors that may be involved in each individuals situation.


Some Traumas include a medical condition where they have difficulty in swallowing, and the food is not able to pass easily from mouth to stomach.  This can cause the food to get stuck in lungs and oesophagus (throat - yes I know big words :P ) This brings with it a whole other list of symptoms like: Failure to gain weight, Vomiting, difficulty breathing, trouble swallowing or sucking and refusing to eat (oral aversion).

In our case Boogie was born prematurely - diagnosed failure to thrive, was nasal tube fed from birth for the first month, and since has had many health problems, involving tumultuous hospital admissions and trauma. He recently had his tonsils and adenoids out (because they believed it was blocking his throat), in which he suffered a severe trauma (nearly dying from bleeding out into his chest) which has decreased our food groups yet again and he refused to eat at all for 3 weeks.  The perfect mix for oral aversion, or so I am told by ALL of our therapist team.

The treatment, especially in our case is going to be a LONG road to recovery, which may not ever end in normality.  He is underweight, Has Iron deficient anaemia and acute asthma, which stops us from eating at the best of times.  But hopefully now that he has been accepted into the S.O.S feeding team, we might be able to poke our head above water for once.  *keep your fingers crossed for us*  And next time you hear someone judging another parent just because their child doesn't have a healthy diet .. Stop and think that maybe it is for a reason .. Not because they are a child abusing bad parent... We aren't all that bad!! I promise!!! 






Wednesday, July 10, 2013

School Holidays In Perth

Perth ... seriously .. is soooo behind the times .... But suddenly on the school holidays ... EVERYONE wants your business!!!! Here is a small list of things you can do (obviously I don't know the whole city working :P ) ... sensory and non sensory.... Costly and FREE!!! I will be attempting to squish as many of the FREE ones in as possible, this school holidays ...


FREE FREE FREE...


Garden City Shopping Centre:

These July school holidays Dinosaur Adventures is coming exclusively to Garden City! Take a step back in time and get to know the most awesome creatures to ever walk the planet.

From 6 - 21 July, they have free fossil digging, giant displays and animatronic dinosaurs in their prehistoric playground. In the Homewares Mall (near JB Hi-Fi) and take a closer look from 11am - 3pm daily  

Fossil Digging:
Every child that enters Dinosaur Adventures will be invited to become a palaeontologist and discover their very own dinosaur fossil. Suited up in a white coat and goggles, children will be given a fossil egg and special equipment to help them chip away at their fossil. Every egg has a fossilised surpise for our little diggers to keep and take home!

*Bookings for sessions can be made between 11am - 12pm daily by calling 9316 7903. All other sessions are walk in only. Entry is free, however a gold coin donation to Edmund Rice Camps WA is welcome. 












Joondalup City Shopping Centre


There are heaps of FREE activities ... We went down yesterday!!! Boogie was AMAZED to meet Yo Gabba Gabba!!! Well the boys anyway lol They have a 2 week schedule .. that I have attached the links to below... Lots of little activities .. and a few shows .. well worth the trip!!!

Week 1 Activity List 

Week 2 Activity List 


Westfield Inaloo :

















Not as amazing with their activities .. but if your kids like Monsters Inc ... then there are some FREE activities there ... and some awesome $5 lunch deals for kids!!!

Lunch deals 



PERTH CITY PASS:
The City of Perth brings you more than a little magic this winter with the world premiere FREE school holiday show Perth City Magic and the July City Playground Pass and Guide – your tickets to free and discounted fun, 8-20 July.
As part of the City of Perth Winter Arts Season, the starry Hocus Pocus Tent will materialize in Forrest Place to host four shows daily featuring The Amazing Mr Jim, WA’s own nationally awarded Best Children’s Magician, dubbed the “Robin Williams of children’s entertainment”.
Audiences enter via the Magical Rabbit Petting Zoo where you can pet, hold and take photos with a collection of cute and cuddly bunnies; then make your way through the magic tunnels into Mr Jim’s shimmery world.
Also featuring magical song and dance routines by Australia’s best young performing arts students, Perth City Magic is complete with disappearing and reappearing doves and fluffy rabbits, dazzling sound and lights, and lots of laughs.
Numbers for each session are limited and pre-bookings are not available. Collect tickets on the day of the show from 9am at the marquee in Murray Street Mall.
Daily at 10:30am, 11:30am, 1pm & 2pm
Hocus Pocus Tent, Forrest Place
While you are there, don't forget to pick up a City Playground Pass. Download the City Playground Pass Guide here.
**Please note there will be train service disruptions during the July school holiday period, so plan your journey ahead of time via transperth.wa.gov.au or download the award-winning City of Perth Parking (CPP) app to find your nearest place to park.**










Karrinyup Shopping Centre:

The kids can Meet a Despicable Me 2 Minion at Karrinyup!!!!!! (Boogie doesn't know yet .. but we are Sooooooooooooo excited!!!!!They are appearing on level 1 opposite the Terry white chemist ... on second week of school holidays .. 14th July 2013 - 21st July 2013...

TIMES: 11.30am - 12pm, 12.30pm - 1pm and 1.30pm - 2pm.

Despicable Me 2 is showing at Event Cinemas InnalooFamily pass details are here






















I will add more ... Just gotta get out there and have some fun while we have some non therapy days ... so I will get back to you all tonight with some more... Enjoy!!! xx 





Monday, July 8, 2013

Our Crazy Busy Life : Therapy

Boogie has been given the choice of 3 things that he wants to do for the school holidays ... We just finished day 4 for us .. and have already had 2 appointments out of the 12 that are crammed into our 2 weeks off .. (secretly I am glad most of them come to us, at the house!!!)

On a daily basis, I feel the guilt of him not being able to live a normal life.  But without all of his treatments and therapy, we wouldn't have anything close to the semi-normal life we have...

Botox therapy : Which for us is multiple injections sites into both legs... his left arm ... Multiple appointments to double check his weight, his height, the pre-meetings, the post meetings .. And the multiple days before admission to make sure he doesn't catch anything, as he has this treatment under GA.. and the days after when he doesn't feel well.. is still groggy .. and we have to keep an eye on his asthma to make sure that he doesn't have a reaction to it..


Serial Casting : Happens 4 weeks after Botox therapy ... It is BOTH LEGS in plaster up to his knee ... He wears the plaster on and off for 5 weeks ... It is a 8 hour process from putting it on .. to make sure it dries and doesn't crack on the inside while he is walking around on it ... he has it put on for 6 days .. then on the last night it is cut off at home (by soaking it for 2 hours in warm soapy buckets - while he watches a movie) ... so that he can have a proper bath .. and we have yet another day off school for a round of physio .. then the plaster is put back on again .. with an extra few degrees stretch in his ankles .. and more weighting on the base to weight his leg and pull his knees into alignment.

PITS Therapy : Once the plaster is off .. we have intensive physio .. on top of our normal weekly physio sessions .. He has one session for his arms with his OT & a session for his legs with his physio ... this is on top of the private OT & Physio sessions we do... And it is to make sure we get the best stretch of his muscles from the botox and to make sure it lasts as long as possible .. preferably to the next botox therapy session.. 

Physiotherapy : Is every week ... at home ... he has an hour session with his therapist ... and then we do an hour worth of phsyio at home per day too with mummy and mason ... just playing games that get him to stretch his legs out .. and his arms too!!! It involves lots of stretches ... lots of screaming .. and more importantly lots of meltdowns!!! To him .. stretching is the biggest pain he goes through ... and he hates it!!! (his own words)

Occupational Therapy : Is a bit of everything at the moment ... we are trying to tackle lots of problems .. mainly independence .. something simple like being able to go to the toilet by himself .. (which he still needs assistance) ... not the actual act of going to the toilet ... but dressing .. washing hands.. opening doors .. flushing toilets .. he doesn't have the physical strength to do it ... Dressing is something he just can't do properly .. he can't put a t.shirt on properly .. the act of lifting his left arm up enough to get it on by himself is hard .. OT for us also involves our Sensory Processing Disorder though ... The stimulation .. the meltdowns .. the lack of eating .. EVERYTHING!!!  OT is done twice a week .. and after botox .. 3 times a week .. Crazy right?! 

Speech Therapy : At the moment we have just had our tonsils and adnoids out .. so are still dealing with the repercussions ... it involves everything from being able to talk and say our words properly .. Our tongue and getting it to work like it should ... his gag reflex .. and his sensory eating ... Let me tell you .. if I was to talk about it on this post ... You would need a cup of coffee and a slice of cake!!! We do this three times per week .. once through TCCP .. once privately and now through our SOS feeding team!!! CRAZYYYY

Sensory Integration : It is play therapy basically ... trying to get him to overcome his phobias .. his sensory problems .. desensitizing his reactions ... and trying to re-program the way his brain takes things in .. There are sooooo many different things we are trying it is sooooooooo hard to list them all ... If you want to know more .. feel free to private msge me on our DRIVING MISS MUMMY CRAZY facebook page ... :) 

SOS Feeding: Is our newest one ... We have been accepted onto a team that helps with his sensory eating problems ... the way it was described to me is changing his brains reaction to food .. how he thinks about it on his plate .. how he perceives the texture .. taste .. smell  .. etc .. all through play and positive learning ... I pray to god that it works ... because him surviving on 10 food items ... is the biggest thing that drives me crazy ... that and the meltdowns that surround it!!! 

Between all of these things we do every week .. plus school .. cuddles .. cooking (only some days - thank god for freezing left overs!!!) I have probably missed one of his therapies to be honest lol but it escapes me right now .... But between all of these .. I really don't know how we find any sense of normality!!! Our life is just CRAZY BUSY ... And I guess that is really where my pseudo blog name is derived from!! Throw on top the impending little league & practise ... I want to officially Welcome you to our life!! Is yours as crazy as ours??!! We can't be the only ones .. surely???!!!






Friday, July 5, 2013

Defensive

So I was told today by Boogies OT that he is ORALLY DEFENSIVE ... Now I am not talking the captain of the offensive debate team ... His brain seems to be confusing signals that his mouth senses are sending it ... We got given some exercises to do today ...

Now anyone who knows anything about Boogie .. knows that he is a biter ... EVERYTHING that goes into his mouth .. doesn't come back out in the same condition lol .. To start his OT sat behind him doing some deep pressure therapy ... Cuddling and massaging his shoulders ...

She asked LOTS of questions about Boogie from when he was a baby ... She wanted me to go right back to the beginning .. When he was really little .. asking about how he liked to be handled ... All I really remembered (As I have blurred alot of the memories out) ... Is the screaming ... the gagging ... the reflux ... the colic ... the not wanting to be put down ... EVER!!! She slumped back into the chair .. with a light bulb almost flashing over her head ... like it all made sense to her .. She put a pair of rubber gloves on .. and from behind she reached around ... still massaging him firmly with her other hand .. two fingers on the ridge just behind his top teeth and massaged side to side 5 times - described to me as lightly applying eye shadow to your eyelids ... and then her fingers on his bottom jaw in the same placement as the top and tugged down towards his chin twice .. And not once did he bite her ... as she went to take her fingers out he pressed his teeth down on them... 


This is exercise she wants me to do twice per day .. on top of letting him brush his teeth (play with a vibrating tooth brush in his mouth) .. This will apparently solve some of our worldly problems ... I can only try at this stage ... That is unfortunately all I have left ...

I was quite teary today .. reliving every little second of his baby life... To be honest .. the first 2 years were the most stressful ... I had a non existent partner by that stage ... he was "working extra hours" .. I had been moved nearly an hour drive away from my family and friends for a "fresh start" ... I had a premmie baby ... And was a new mum who didn't have a clue .. AT ALL .. stuck in a house .. with a visiting nurse that was blowing off my concerns saying I was just an over exaggerating first time mum!!

Yep .. That was my life!! I guess you can only imagine by this stage .. that when half my friends up and stopped talking to me .. As they do when you change your lifestyle .. as most new mummies experience... That I felt isolated .. and can what only be described as sadness just started to creep up on me .. With the exception of my mum .. who was and is amazing .. but lived just over an hour way .. No one understood .. and more importantly no one believed what I was saying... I was for lack of a better word ... ALONE .. Nothing made sense ... My baby wasn't doing what babies are supposed to do .. And all I kept getting told was ... it was normal ... he would catch up soon!!! I knew deep down in my gut .. I was right ... and they were wrong ... And boy .. haven't I proved them wrong?!




Wednesday, July 3, 2013

Being Different...

Wow ... I have struggled now .. for the last 5 minutes on how to start this ... But alas ... I am just going to throw myself into it head deep and hope I don't drown!!!

You know when you were growing up ... And you saw someone who was different ... Your mum always told you to be polite and not stare ... But you had 10 thousand questions because your sooo curious about the world that you want to know .. why .. what .. how?!  I was one of those kids ... I didn't look at people differently because they had their disabilities or differences but I wanted to know their inner most workings and mostly if they were ok ... I wanted to help them!! 

Now my greatest fear as an adult ... is Boogies peers and others staring at him as if he IS different ... Walking in and out of school most days .. you get the looks ... the stares ... and the casual side glances from the other mummies and older kids ... as to why he is walking funny .. why can't he run ... why is he always falling over???  Don't get me wrong...  if Boogie was sitting in a chair with the rest of his classmates you CAN NOT tell he has a disability ... he is not really considered mentally challenged .. only being 3 months globally delayed .. he is quite a witty, fast thinking, joke making little person.  I know this will get him through his teenage years and I pray, that he doesn't lose his sense of humour ... But it worries me .. And most days .. walking in and out of school .. feels like we are doing the walk of shame ... avoiding the inquisitive eye contact ...  waiting for someone to jump on you with 10 thousand questions ... just like I once had .. not knowing if they are judging you .. or him ... or whether they are pitying you ... Sometimes I think the latter is worse... But sometimes I just pluck up the courage to have the same smile on my face that Boogie ALWAYS has... don't get me wrong .. my protective side makes it sooo hard to just SMILE back at them sometimes .. But it is well worth it!!! 

At home and with his close friends he is treated just like the rest of us ... he gets told off ... he does his little chores and is encouraged to try everything ... even if he fails ... he will keep trying to succeed because he is a little fighter .. But school is a WHOLE DIFFERENT STORY... at school ... he has a teachers aide ... who helps him with things - not that I don't at home ... but at home we have the time and patience to let him spend half an hour doing up his own pants after going to the toilet ... Small victories that he doesn't usually get the chance to succeed with at school ... Which means at school he has the label of BEING DIFFERENT.

I guess you don't really think about little stuff like that when your living it ... The whys ... the what ifs ... and certainly the how comes?!  Don't get me wrong .. I don't mind answering the questions, in fact ... I would rather them be educated in our life than be judged by them!!! But my biggest fear ... is that because he is DIFFERENT ... he is going to be treated as such throughout his life!!  Some days it gets to me sooo much that it requires chocolate ... and others I can just shrug it off ... I am like that proverbial duck that above the water, looks as graceful as a swan ... but under the water is paddling like hell to stay afloat!! 

I guess I worry no more than every single other mother about whether their child will fit in ... and whether they are going to be a prime target for bullies ... But we have the added pressure of whether he will be able to cope along with everything else the pressure of having a disability .. And it scares the living crap out of me!!! Don't get me wrong .. I don't want to keep him in cotton wool his whole life, I do to a certain degree with germs ... trying not to expose him to stuff that can kill him ... Just like a mother whose child has anaphylaxis ... but to the flu and red food colouring lol ....  I only hope that I can build him up to be resilient and have an amazing sense of humour ... I don't want anyone taking the shine off his smile ... EVER!!! 

But it makes you think ... When you see somebody in the street ... Who IS DIFFERENT ... How do you react?? I guess I have never really thought about it before ... What my prying eyes actually mean to the person on the receiving end of them .. And it guilts me to think that my childhood curiosity and my general inquisitiveness, even now as an adult would make someone feel uncomfortable ... It makes you think .. How are we supposed to react?! And I guess the answer is, with a friendly smile or a Hi!! People don't mind you asking ... But a stare and a bombardment of questions would just be a bit overwhelming .. Make sure they know your genuine and heartfelt ... Because NOBODY wants to be treated like a freak show ... EVER .. Just for being different .. Wouldn't you agree???







Tuesday, July 2, 2013

Sensory Processing Hell!!

Wow today was a HUGE handful of reality... Doctors always get the biggest reaction out of Boogie ... It is although their slightest touch sends stabbing pain throughout his body ... the simplest leg measurement turns into a parade of screams and agony on the ears ... both ours and his ...

Today was no exception .. The Meltdowns came thick and fast ... hands over ears when he was screaming ... kicking ... biting ... and generally thrashing about ... all because his Physio who checks his measurements at our Pre-Botox meeting ... so they know how much they can inject into his tiny little body ... It is something that we can't not-do ... It is a necessity ... Something we have to grin and bear ..

Today however was the first time his Cerebral palsy team at PMH found out that he also has sensory processing disorder ... and the reaction I got was a chorus of "Ahhhhh that makes soo much sense now" ... They have known his weak little body for 3 years now ... This will be his 7th Botox session!!! It has gone soooo fast!!! And now .. we all understand why he stresses out ... Why he sets off his asthma through stressing out and screaming the hospital down .. Today ... In their eyes ... IT ALL MADE SENSE!!  It wasn't just a child .. scared from all the hospital visits ... from all the needles .. the poking .. or the prodding .. It was a little boy with a REAL DILEMMA ... They asked me how I wanted to approach it ... And my honest answer was ... I DON'T KNOW!!! I don't know how I am supposed to approach his anxieties ... I usually promise the earth or distract him with angry birds on my phone .. which works for about 50% of the treatment ... but today NOTHING WORKED... and they UNDERSTOOD!!!

I felt like my parenting wasn't being judged any more ... that he wasn't being judged as an angry little person... 


It all made sense!!  And it would never be ok ... And they were ok with that ... Even if he wasn't .. 

On the News tonight there was a little boy that hasn't eaten for 18 months ... I thank my lucky stars that we are over that ... He may only have a handful of safe foods ... But I know what that poor woman is going through ... I know how heart breaking it is ... And I know how little help there is out there for everything that we are going through ... It is like trying to lick your way through an Ice sculpture to get past ... you know you can go around it (by eating) but your brain just wants to keep looking through ... and then your tongue gets stuck .. Just like in all the kiddy movies .. your stuck .. half way through licking your way to the other side of the ice sculpture!!

We can only go up from here you know!!! With the food aversion ... with the pain aversions .. with the sound aversion .. His asthma ... His Cerebral Palsy ... His Anaemia ...  With everything ... There are people that understand!!! I can't wait to start sensory integration therapy!!! It can only get better!!!! 




Monday, July 1, 2013

Giggle & Hoot ... Hoot Hooooooooot!!!

So we went to see Jimmy Giggle and Hoot (and Hootabelle too I guess) yesterday!!! And it was worth EVERY SINGLE CENT!!! The laughs .. the smiles ... was priceless!! Of course we dressed up as Super Hoot ... our favourite costume (peter pan aside).  I got begged for an impulse purchase .. but surprise surprise... for once it wasn't the biggest toy in the stand .. I managed to cop out with a $5 felt Bananas in Pyjamas picket .. WOOOHOOO!

We did a last minute dash through the door and perked ourselves down a couple from the front and centre (Gotta love presale right!!) And the music came on straight away .. I avoided every single second of whining about when it was going to start!! Boogie wore his Hoot beanie, which was covering his ears and had no complaints about how loud the music or show was .. It was perfect - Yay for no sensory problems .... well except for the fact I had forgotten to put his robot necklace so we spent most of the show with our sleeve in our mouth ... But hey .. better than the seat !! He didn't participate much in the dancing.. but I didn't care or push him too!! It was lovely and he was sooooooooo happy!!! If they were to come back .. I could not recommend the show highly enough!! We will definitely go back ... those smiles were priceless!!! Thanks ABC 4 Kids from bringing them over!!!


Super Giggle & Super Hoot!!