LIVE NOW - NO OPPORTUNITIES WASTED!!! LIVE in the NOW!

Every day more and more children in South Africa are born with Autism.



Cullen was born 15 September 2006...



Children with Autism dont show emotion, dont make eye contact, dont play, dont interact, often have problems with Speech and fine motor control...



Cullen continues to challenge himself and conquer all of this...



The Challenge - SPEECH and FINE MOTOR CO-ORDINATION, MORE PLAY, MORE INTERACTION...







Follow our journey, our challenge, our triumph, our lives...



Monday, 27 June 2011

its GROWING BACK!!!! No its not like eye brows!!!

ITS GROWING BACK!!!!!
Horsie's hair on his head - his patchie...
It has little razor hairs growing thru...
THANK GOODNESS its not like some women's eye brows.

I mean my mom plucked her eye brows (or should I say OVER plucked)...
And well they didn't grow back...
so here I am... a mommy very HAPPY to have a tuft of hair the size of two R5 coins to start to grow back again...

WEIRD...what makes you happy these days...
Today its a tuft of hair that was literally ripped from my horsie's head a few weeks ago while he went round and round on a indoor swing in the OT room at school...could  have happened to any BOY...he is a boy...my horsie not just the face of autism.

Tomorrow it may be...happiness due to our horsie saying "doo doo" to sleep or finishing no less than 5 tasks his task master speechie (speech therapist) set him today, normally only doing 2.

Yesterday it could have been the fact that he basked in his new "cars" bed being put at his nana's house - as if he knew just how special he is and just how grown up he is - that he now has his own "BIG BOY" bed...he climbed into it smiling from ear to ear...excited and rapt by this bed...mommy even had to get on the bed and hold horsie...enveloping him with my love, my touch, my deep pressure.

You see its these TINY TINY things that make our day...make us smile...make us realise...

That yes its small...BUT THERE IS PROGRESS...

From the smallest tuft of hair growing...to the gleam of our Horsie's eye - filled with pride in his OWN sense of accomplishment - his VERY OWN BED!!!

Tuesday, 14 June 2011

"APACHIE"

OH MY WORD!!!!!!!!!!!!!!!!

MY BOY HAS RIPPED A PATCH OF HAIR OUT OF HIS HEAD!!!!!!!!!!!

AND HE IS OK!!!!!!

HOW you may ask? Very innocently my gorgeous horsie was swinging in the therapy room at school on a occupational tummy swing...which he does almost daily because we have a similar swing at home too.

He somehow got his hair twisted in the chain/rope....

 and in an attempt to FREE himself he R I P P E D a chunk of hair out of his head!!!!

AND guess what...I am in Durban on a business trip...600km away... ofcourse I am....

Nana says it is NOT red swollen or tender and he does not seem fazed...

He did this yesterday and as we speak he is fine and it has not deterred him at all...

His poor beautiful hearted teachers are HEARTBROKEN and scarred as am I...

BUT AS FOR HORSIE...well he is calm, and smiley...aaaah heck NORMAL!!!!!

My nerves are SHOT and frayed and in disbelief...if it was me....I WOULD BE BROKEN IN PAIN!!!!

Then again I AM NO HORSIE!

LOVE YOU HORSIE

Tuesday, 7 June 2011

In SUPPORT OF CHECKERS!!!

Today I came across something so surprising...so wonderful!

               CHECKERS

The shop...yes...and it is not for their awesome range of CHEESES (*wow*)
It is not for their very BIG array of stunning WINES...
It is not because I can buy concert tickets etc at Computicket...
It is not for their low low PRICES...

BELIEVE IT OR NOT...

It is because of this....

THEY HAVE those collection TINS at each till - and they COLLECT for AUTISM!!!!
The Association for Autism to be exact.

PLEASE SUPPORT CHECKERS and drop your change in these tins...
Every single "monies" as ladybug likes to call it contributes to wider knowledge base on Autism and professionals becoming more educated about Autism.

YAAAAAY Checkers!

You have our JUMP UP award!!!
Jump up and make a DIFFERENCE!!!!

Sunday, 5 June 2011

its official IM A BIG SISSY GIRL - Mother Warrior TSK tsk!!

So...the blood tests we needed to get done for Horsie...

Well they are done...

Its been 7 loooooooong days of anxiety, since meeting with Dr Lindenberg. I knew we would need to get them done, all 5 brown viles (The BIG ONES) to test his thyroid, FBC (Full blood count), Ige (specialised food allergies to peanuts, wheat, gluten, eggs and fish etc AGAIN - just to be sure), B12 levels, iron, liver function, kidney function , and I asked while we at it - blood type.

That was a mouthful.

DREAD DREAD DREAD!!! First we were going to take him Tuesday - that didn't pan out. Then we were going to take him Wednesday - guess what- that didn't pan out and then this morning - except this morning was the coldest morning known to mankind this year, and we would need to get it done before an IEP (individual education plan) with his school angel teacher, and so NAH NAH NAH... we postponed til this afternoon.

3pm came, no daddy bear, 4pm came no daddy bear, then 5pm - well I said its NOW or NEVER (so cliched I know) but really true, my body - the DREAD couldn't take it anymore. So after soliciting advice from all my bbm mommy friends...Wilgeheuwal Hospital here we come.

NOTHING I mean NOTHING prepares even this mother warrior for the scene that ensues - my boy 5 adults...and a needle.....flip...that was hard! No Barney I LOVE YOU theme song or CARING CANDY SUCKER nor bottie could soothe my kicking, writhing, baby boy (all 28kg of him)... My little Goliath...

It must have taken 3 minutes MAX, for all 5 viles to fill with his dark red blood - and as she filled each one...it felt as if the blood drained painfully from my body. My boy was ANGRY!!!! So very very ANGRY!!!

He was being held still (HE HATES THIS), wrapped in a blankie, and by no less than 5 adults with his mamma trying to be brave and sing barney in her crackling voice filled with tears (although Mother Warrior would never show this to her boy in this moment.)

The last vile filled, and she pulled out the needle and we were done. HE WAS ULTRA BRAVE!!!! We made it...but bearly. CAN YOU SAY TRIPLE VODKA NOW PLEASE!!! I'm a big sissy girl...wanting so bad to be MOTHER WARRIOR! But sheeesh man - can those crazy smart scientists not find another way to test our blood by easier means - by more stress free means? Please!!! Like via suction technology thru a patch on your arm - or by mouth swab or nail clipping or something...

ITS OVER...the trauma of this...now for the results and our plan/way forward!!!

Oh and the B 12 methylated injections (which I have tried to source for over a year now) arrived today by courier from the fair mountain... Cape Town...but one prick is enough for one day...(this is a whole another blog)

Lets just say...WATCH THIS SPACE!!!! Horsie gonna rock our world!!!


THIS POST WAS LOST - I have found it and posted! But this was meant to be posted on THURSDAY 2 June 2011 before the post on jabs...

LADYBUG spreading her wings - and QUICK!

Ladybug now has her own PRINCESS bed...its one of these wonderful "in-between" plastic beds...not quite a big bed and base and not a cot...and she is officially in it for a WEEK NOW!!!

Wow!!!! The only downfall - is a wet kiss on my face at 5:30am on a SUNDAY morning!!!

Also she had her first hair cut yesterday at...

TRUDY is amazing...sorry but she is! She has done Cullen"s hair now 3 times...and with each time it becomes just that much easier...

Awwww mom - why do you have to cut my hair and with something so LOUD and sore on my head!

Princess with fringe -- CUTIE PIE
Look at that Face

SO Ladybug is spreading her wings...awwwwww....









TRIPLE VODKA PLEASE!!!

Ok so with MANY MANY DEEEEEEP breathes.. we have survived two nights of jabs to our horsie!

We finally got the methyl B 12 (special methylated vitamin B 12 that crosses the blood brain barrier - and has shown significant success in terms of language acquisition amongst other things) In Jenny McCarthy's book "Louder than Words" her son started these B 12 injections and within 4 days he regained all his speech....AMAZING!!! So here is holding thumbs...

It appears that when we improve glutathione production which is made by methylated B 12 , many children can make significant improvements with focus, concentration, and language. We have had the nasal spray a red aweful thing...that makes Horsie look like his nose is bleeding every morning - but the thought is, that the injections are just that MUCH MORE POTENT!!! Well ofcourse they are...but jeez can they not just develop  a PATCH??????

Anyway all of this - does not ofcourse come without a HUGE amount of anxiety on our part! I so take my hat off to parents of children with diabetes and the children themselves who have to bravely inject themselves daily! I now know what you must feel...

We tried our first jab on Thursday evening - I decided we needed a calculated area to focus on, so I took a marker and put a dot on our Horsie's thigh - almost like a dartboard BULLS EYE - FREAKS we are - but there is method in our madeness (ok my madness)...

I then rubbed EMLA (Schedule 1 cream) that makes the area you rub it on dead. We decided to get it over and done with ASAP...in fact I have NOT seen my hubby so full of angst in since well..

NEVER!!

Nothing prepares you for the thought of VOLUNTARILY injecting your 4 and half year old boy!

Hubby decided that he WAS TARGET PRACTICE!!! So he injected himself - but in the 'quickness" of trying to deliver this 1mm needle 2mm into the skin just under the skin subcutaneously - he jabbed a bit hard into his muscle...LEARNING CURVE...NOT TOO HARD....NOT TOO HARD!

He said it burned and then formed a little lump - which Dr Louise said was likely if you went toooo deep! So for Horsie...no target practice just a quick in- pump syringe all 7ml of it (also RED) and pull out quick...sounds easy enough...ha ha ha who are we kidding...

So at the next nappy change we did it!!!! Horsie did make a face but daddy was sooo quick he didnt even realise - perfect execution - NOT TOO DEEP NOT TOO HARD....and in and out. I was in AWE...hubby did it...I was panting...breathing...soothing (myself)

Tonight was the second jab - we have to do this every second day for 3 months!

Obviously - our boy is highly highly UNDERESTIMATED in terms of his understanding!

He knew what was coming at the next nappy change, slapped hubby's hand almost driving the syringe further into his left thigh...OUCH!!! Hubby quickly pulled back and jabbed again.

Its over for tonight...now only to get through another 2 months and 3 weeks and 2 days....

Phew no easy feat. BUT like a friend said - dont think of the pain think of ALL the GAIN!!!

CHeers to that - ok maybe not a TRIPLE Vodka but a bit of champers will do - these needles might JUST be the BREAK THROUGH we need and crave so much...
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