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, 19 December 2011

Out with OLD in with the NEW NEW NEW PICTURES

THANK YOU LampLIGHT Photography...

The Pictures are absolutely beautiful!!!

So natural...
So unique...

They capture our essence...our souls.

Just GORGEOUS!

Blessed

Sunday, 18 December 2011

Cranial SHUT DOWN...

Ok so we have seen Dr Lindenberg with a few interesting and promising changes, we have seen Hannah Kaye with the elimination diet, we have bought some OT swings and goodies for Christmas, we have shopped at a new shop in Bryanston- Fruits and Roots, we have ordered and frozen our SMART bread from the organic market, we have bought the special wheat free, metal free suncream (which costs nearly as much as a trip to the next space station), we have bought our new clay water filter system, and ordered the salt chlorinater for the pool, and WE HAVE FINALLY managed to put up our small christmas tree.

This time of year always reminds me of how Horsie hates opening presents. I think it has something do with "expectations" he has NO IDEA what the big fuss is about and I think sensory speaking he hates the sound of the paper ripping - an Autism site I frequent quite often, had a mom explain, "I just don't wrap my son's gifts anymore"...I thought wow- as simple as that - so we NOT wrapping Horsies' gifts this year and if he gets from family and friends we will ask Ladybug to rip them open - DOUBLE FUN!

With all this in mind, both ladybug and Horsie have already been off school for a week, and only return round 14-18th January...Iand with both hubby and I starting at a new companies recently, we both have another week of work...and thats where Nana comes in...she has been and will still be our ultimate HERO taking care of our precious til we on leave! Phew!!!

Already I have CRANIAL SHUT DOWN...no brains with which to actually do anything...I AM SUPER TIRED, my body is tired, my mind is tired, and all I crave is ME TIME!

This long weekend, has been great to spend with the ladybug and Horsie, and we have had an awesome time with friends, and family...but enough now, enough planning, appointments, running around, crazy "what NEXT" thoughts, diet modifications, speech assessments, horse riding lessons, OT, school, toilet training programme set up, nutrients ordered, special water filter system stuffs, getting the pool switched from chemical to salt chlorination, baking, shopping, making, ENOUGH...

Just want to jellyfy, sit and mush in my white matter, soak up some sun (within limits ofcourse...I am a red head) and drink some yummy mind numbing cocktails, and watch while the bug and Horsie sort themselves, occupy themselves, feed themselves, no nappies, just play, sleep and eat...

Yeah right...

But enough...

6 days to Christmas...

Such a beautiful time to reflect, to resolve, to renew, to behold...

Precious family and beloved friend time.

Sunday, 4 December 2011

Two Worlds

So a great weekend we had...

We met with the Elvis Fan Club who helped raised a few funds for Horsie and the kiddles were spoilt with Christmas pressies. (Thank you Jennie and everyone at the Jungle room of Africa) and then we also had Avril come see us this weekend with her son Ricky, and Kim (his girlfriend and daughter of the famous Jill Stacey ASA Autism South Africa Chair lady!) and again the kiddles were spoilt!

More surprisingly we got to chat... we got to bask in our beautiful ladybug and horsie.
Some great little miracles happened this week...
Cullen undressed all by himself to get into the bath, and just yesterday shook his head "no" when I asked if he wanted some egg...he also clearly said "FUN" to me, and announced "no doo doos" to nana one evening this week...

Ladybug is becoming quite the Dirty Dancing FAN...and loves to sing along with the x-factor finalists...

So we have one child in their OWN world and another in a DREAM world!

We see Dr Lindenberg Friday...and we had an organic amino acid test done and screened by the GREAT Plains laboratory in USA...lets see where we can tweak and get this boy to speak speak speak...

Another appointment we have coming up is one with Juliet Newberry on Monday 12 December 2011..he is an ABA expert...we want her to help with the potty training..

Wish us luck...

Here is to our Horsie and Ladybug...beautiful creatures in their OWN DREAM WORLDS!



Sunday, 27 November 2011

ENOUGH NOW

I have had just about enough of 2011...
Its been the toughest year since 2006...
I mean how much can one family endure..and yes I specifically used that word ENDURE not the phrase "deal with"...because at this moment that is how I feel.

The loss of two grandparents, work issues, relationships issues, kiddies in hospital, hi-jacking, new jobs, and SPIDER BITES...
YES me too...I have had just about enough now!

I am sick with 2011...
but then I need to remember with all the YUK came lots of goodness too...

U2 concert, hearing my SISTER fell pregnant with a baby girl, my hubby and I getting new good jobs (out with old in with the new), being able to enrol our ladybug in the new Trinity House campus, getting a new car, nana kicking ass in her para-legal studies, me getting my honours CUM LAUDE, the beautiful people who helped in our first Golf Day, the Elvis fundraiser, the Barnyard Fundraiser, winning free tickets to two different shows, the various other concerts we attended (Kings of Leon being one of them), going to Cape Town on some superb Psychiatry training, getting our HORSIE even more intensive therapy from Reva, Louise, Hannah, (soon Juliet) and Wiggles...

And I am sure I am leaving out so much...
So...
When I look at the list...
It seems I am more blessed and should be THANKFUL!
Cathartic, helpful, needed...


Tuesday, 22 November 2011

The NEW babysitter

So you know every single "new Age" parenting book refers to the issue of TV being a "monster" and NOT to be used as a babysitter for our children...

Well I don't disagree at all...but in the midst of getting home and the "suicidal hours" that almost zap the very last bit of energy never mind sanity out of me between the hours of 5 to 9pm...I need some kind of crutch.

I am sure a half an hour of "EDUCATIONAL" purposeful BARNEY or an HOUR of Nemo/Cars/Happy Feet/Tangled won't harm, while you THE SUPER MOM -  cook ( a nutritious balanced super filled anti-oxidant, good protein meal), pack bags, run bath, read newsletters, potty train, play, pour tea, do washing, sweep the floor (from the biscuit snack or nut snack or biltong snack you have just given), push kids on the swing, jump on the trampoline, play some more, change nappies, make rice milk, boil water (to put in the fridge as drinkable good water for later), add Epsom salts/Himalayan salt to the bath water, sort clothing draw, make beds, clean dinner table, pour more tea.

I am sure in those moments the TV seems just like a piece of DISTRACTION HEAVEN...
So please book people (writers/authors/experts) try to keep the INSANITY of our mother's in mind when you preach that TV should NOT be a babysitter...

I have an alternative which for me was not something I DISCOVERED...my lady bug and Horsie did it all on their own.

The NEW babysitter in our house is the TUMBLE DRYER!

Yes you heard me...the dryer, with lady bug "pretend playing" its her shop/room/storage unit, and just recently her BED...she crumpled herself into the dryer and said "hi mommy, look at me! with the biggest smile on her face."

That lasted all of two seconds til our Horsie climbed on top of the dryer ( his usual FUN, he is a climber, and will do whatever it takes to fulfill this NEED, with whatever appliance, furniture piece, wall...actually whenever and on whatever he can).

He accidentally in his accent switched on the DRYER, well I have never seen lady bug jump so fast, she LEPT out...

So there goes my babysitter...so I guess its back to the fabulous TV as a babysitter.

No judgement please its all in the name of MENTAL HEALTH - MINE (and to a lesser extent the Horsie and Ladybug.)

Wednesday, 16 November 2011

LIfe's Quirks

Ok so I do not for the life of me remember it being this HOT when we were small!
I have been on training in Cape Town and the weather was glorious (although some will beg to differ with me). You see I still think I should have been a NORTHERN HEMISPHERE girl...I enjoy a bit of cold...
In fact I HATE BEING HOT!
I sweat, I smell, I feel like I am going to overheat (COMBUST) and I ALMOST LOSE my mind...and with my training in the beautiful Cape...(which included lots of interesting information on serotonin and dopamine) I began to wonder if returning to GAUTENG was best idea in terms of my state of mind...

I mean the heat on the weekend was UNBEARABLE...so much so that I began to feel as if I was losing the few firing neurons I had left. The kids were hot, listless and irritated, and as a colleague of mine said, "beneuked and bedonerd." (love the Afrikaans language its just so descriptive, rich and to the point! - hope I spelt that right)

And when I am HOT and bothered and IRRITATED...this does not bode well for the rest of the family.
I was stressed...
Having spent an entire week away from home (NO NOT A HOLIDAY - please let me remind you- it was training, intense brain saturating training) and not seeing the babies, hubby or the rest of my family (my sis, my mom dad etc) I am sure they expected this mommy, daughter, friend full of energy and happy, and all I was to be brutal, was HOT, UNHAPPY and sance energy!!

HORRIBLE HORRIBLE mix to an already stressed little ladybug and Horsie who just wanted all of me...missed me and needed some mamma love.

Sunday night came and I lost the plot...it was the end of a PHEW weekend, and
Scenes of Psycho (the movie) began running through my head...just 10 min of sleep, rest, NOTHINGNESS was all I was after...

And then this morning...the rude realisation of exactly why I felt so panicked and stressed, hot, tired, moody and just NOT me....HIT and it HIT HARD
HORMONES...(there it is again...that serotonin, dopamine etc etc)

Unforgiveable, unavoidable 28 day (sometimes more sometimes less) pattern to every women's life...

NEW NOVEMBER is here...gonna try run with it.. as soon as I get over these next few days...

LOVE YOU Horsie and BUG...mom will try to kick against her body's internal rhythm..and get to her good self again.

Friday, 4 November 2011

Sweet Smell of Angels

So the last few weeks have been a SERIOUS ROLLERCOASTER...
Here goes J in Hospital for her spider bites, then C in hospital for Bronchial Pneumonia, me starting a new job, hubby settling in his new job, having a wonderful fundraiser at barnyard (CRESTA), going to see Kings of Leon and finally this week culminating in J having about a 8cm cotton-wool something being pulled from her left nostril by her teacher...

Tomorrow we off to SIN CITY for a night, and then I fly to cape Town for training for a week with my new company.

It feels sometimes that the world has stopped and I keep turning...almost like the spinning Horsie does to regulate. I feel at times so out of control and yet...having to play warrior!

What amazes me is what an impact our Horsie has on people.
At the Barnyard - I gave a little speech (so unusual for me...NOT) I feel my little crusade that education, tolerance and above all UNDERSTANDING is so important it surpasses all else...and feel in every opportunity MY IN BRED INSTINCTUAL NEED to share, to share our life, our challenges, our fears our triumphs...and in for this reason why I blog (well and selfishly its cathartic too.)

An unknown who attended the barnyard last week, not part of OUR 140 STRONG CROWD was so moved by C and our story, that he donated there and then with TEARS in his eyes, now nothing nothing comes close to seeing a grown man who is not related, tears in his eyes saying how he is moved by us...BY US???WOW!

And then another stranger... did the same...

It just makes me realise and breathe in the sweet smell of angels...all around us in all shapes and forms.

And just like that night, this week again confronted with a sweet angel in the form of ladybug's teacher who all on her own managed to pull out some "cotton-wool" like thingy from my child's nose...I was beginning to think, NO I did think...that October was HELLOWEEN month for us, both kids in hospital in one month...ABSURD!!! Teacher even said, "NO MORE hospitals - Its November!"

One comparison I can make after this little experience, is that the lazy boy chairs at Flora are much more new comfy and better, than the ones at Olivedale although both hospitals were so great! Our doctors well -angels!!! Thank you!!!

So you will for give me for having some "radio silence" as good blog friend of mine describes...

We were just taking in the sweet smell of ANGELS!!!

Thursday, 20 October 2011

FULL NEST SYNDROME

So many many mommies worry about the EMPTY NEST SYNDROME...
In fact just this past Monday night in the new season of ARMY Wives on Mnet, there was the theme again and it got me thinking about this.

It got me thinking about... my horsie...
Would I ever actually feel the "EMPTY NEST"?
Or would it be more of a FULL NEST SYNDROME?

At some point a mother of a child with special needs will allow herself to go to that ugly dark black wolf within her...the one that thinks about how hard - how tough it is raising a child with needs - that its almost entirely exhausting - so taxing, and will wonder will it ever END - will it EASE? or is this the life she is TRAPPED in - confined to?

Don't string me up and "burn me at the stake" for my utterly negative thoughts...but will I ever feel lonely? or will my Horsie be with us forever? It is daunting and frightening and awesome and great and ugly all at once. I want HORSIE TO LEAVE US (yes I actually verbalised that)- but I am also realistic...

He has moved up the CARRS Scale in terms of his diagnosis with Autism - to an expressive "MODERATE" but when oh when will the LANGUAGE come - the music to my ears "MOMMY" or "LOVE YOU?" and the FREE FLOW thereof???? He has some words here and there...but comon let it roll (Rocky rolls as ladybug says.)

Horsie is 5...5...
I want to start thinking horrid thoughts about saying good bye to my kids...and as in Army Wives be begged by my kids to get a dog or a cat to help fill the void...
I KNOW I MAY SEEM WEIRD BUT I WANT THAT...

But it just seems like my destiny - is more FULL than empty...yet another "special" difference in our lives!

Ok so I have laid myself bare...
I have shown you ...its not just all smiley faces and happiness...
Its NOT ALWAYS EASY raising our Horsie and ladybug
But...
Its always PROVOKING - thought, soul and body.

So if I have a fledgling...who stays longer than ever expected...he or she (lets face it ladybug is joined at my hip too) will just have to NEST WITH ME!!

Friday, 14 October 2011

Latches, Locks and Devices ...OH SO "OUR" Normal

Ok so some feedback...ladybug is on the mend...
She has 2 small incisions and today danced, rode her bike and even had a little swim.
Nana our "sleep angel" is having a much deserved TIME OUT in Cape Town...
and
Tomorrow I am being either REALLY BRAVE or REALLY STUPID and taking both Horsie and Ladybug to the Bryanston organic market to buy some smart bread for our boy. (we have run out - and boy is that an issue.)

But for tonight's topic...
Latches,locks and security devices.
Just yesterday whilst shopping at the best place known to womankind - WEST RAND PLASTICS
I came across an ingenious little device
A fridge lock...
Excited?!!!
Well for those of you who frequent our little "crazy" home
You will know that we lock our fridge, our pantry, our cleaning substances cupboard (the naughty cupboard as ladybug calls it),our bathroom, our bedroom, and we triple secure our swimming pool. (Net, fence and coded bicycle chain).

Horsie has this habit of getting into precisely everything he shouldn't!
So the fridge...well that is HEAVEN in an ice bucket for Horsie...all the good and BAD stuff is kept there - and HE KNOWS IT!!!!
 So we have to lock it to ensure that there is control over what he takes out to digest..he is on the GFCFGF diet (and now an Elimination diet from Hannah Kaye - jeez that sounds offish! ). He is literally eliminating bad stuff for his body...

Anyway my point is...I got so excited when I saw this lock for the fridge because it does NOT involve finding a key (which is not actually the original key to the fridge because Ladybug loves keys and hid it away) twisting the lock (because its a wee bit damaged from all the locking and unlocking) - No
This lock is so easy, you just hook and it clips closed, and unhook and open.
SIMPLE
EFFECTIVE

The next lock we need is for our pantry cupboard...the broken off key...is just NOT going to hold for very much longer.

And all this locking and unlocking is oh so "our" normal, we forget when we have friends over to tell them about the locking, and you should see their faces sometimes, almost FREAKED that the blady fridge won't open or that we lock our pantry (I mean "does one of us" have an eating disorder that we need to lock the food cupboard!) - NOT normal!

Our normal = not so normal
Wouldn't have it any other way...
For now that is...
he he he

Monday, 10 October 2011

Trying to mommy up from woesy to warrior...really stretching

SO ITS BEEN what seems like a solar system (OK trying) today at this point to be witty...
I'm failing miserably

Its been a long time since my last post.
So much to share...

First I have been through the most strenuous day in a long time, my ladybug had SERIOUS surgery
for spider bites today.
I had a pity party and asked the usual WHY ME questions WHY HER...WHY NOW? all of which echos back empty with no actual answers...
so why do we ask these questions?

It happened...we waited paced up and down the corridor, clock watched...

I made the hospital bracelets of which she had 3 in white pink and yellow seem like the latest french cutoure, the cot bed with its steel side bars seem like "CARS" latest game and the theatre garb I dressed in to carry my beautiful bug to the table...as the funniest thing I could ever wear...

And all through my insanity and craziness...my little ladybug smiled and with her deer eyes TRUSTED ME...

I quiver, I shake but in those moments I WAS HER WARRIOR...
No fear here.

But as I write this in the lazyboy...which many many previous worried sick mommies have sat in...I can only be glad that in some sense, even if it was only the tiny tiniest part of me (the cave woman part) was SUPER HERO albeit for those fleeting moments.

Please let me keep finding those warrior soldier moments within me to deal with the next few days!!
maybe I need to start channeling Joan of ark or....I don't know most of all my other incredible mommies I know - one of which is my OWN mommy.


Monday, 19 September 2011

Splattering COUGHS

I hate it when my Horsie is SICK.
And not just cause I am a mommy who has to deal with the sick little body,
but because my Horsie cant TELL me whats= is wrong or sore or eina or painful.

So I act like doctor and try to sort his pain, try to help with his cough, try to get him to eat right and sleep well, and take all his nutrients. Its a guessing game at times...sometimes with me winning the loot and sometimes with me having to PAWN all my "possessions" to try to get to what the problem is.

I almost feel like I play a game of Russian Roulette - its a gamble...most times...
He had the tummy issue 2 weeks ago, last week it turned to the splattering coughs and sore throat issue, but I was prepared and armed with a Zithromax Script (GREAT ANTIBIOTIC 3 day course) usually this hits it...but we have finished the 3 day course and only now, does my Horsie's cough seem a bit loose, but its still there...still bothering him...to the point where he has been physically hitting his OWN HEAD AGAIN!

This drives me insane...and I have expressed this before...
I feel this is so destructive, almost going in reverse not progression and yet I know this is HIS ONLY form of communicating
MOMMY I AM SORE!!! IT HURTS!!!

But I still remain HEART SORE, that is what he has to do to "SPEAK!!!"
So...more Prospan? (Cough mootie as my mom calls it) Another doctor's visit? Higher Vit C and B and DMG dosing? What next?
THIS poor Horsie...
AND TOMORO is a BIG BIG day...
A consultation with Reva Fedigan - Speech and ABA therapist from the US of A...
2 hours...
and 3-5pm - suicide hours....
Please Lord let him be somewhat ok by then...
The assessment in itself will be exhausting nevermind adding the spluttering splattering coughs, and chest heaves!

Tuesday, 13 September 2011

PARTY PREP...

So today I need to FOCUS!!!
I need to start thinking about my Horsie's BIRTHDAY on THURSDAY and what creative nummy something I can come up with, without interferring too much with his special restricted diet but that also TASTES BETTER THAN CARDBOARD!

I mean its no jokes people, the GFCGFGF diet is CRAZY bland and my boy deserves something special THURSDAY for his 5 th BIRTHDAY...let me say it again - his 5TH BIRTHDAY!

I cant believe 5 years ago, I was what I believed the biggest hefferlumpiest (yes thats my own word) most complainy preggy lady, who couldnt wait to meet my little baba boy.
Its also been 5 years to the day, that we celebrated my Granny Ann's birthday at a prawn restaurant in the South, and where she looked me in my restless, achy boned, blary (sleep deprived already then) eyes, and said, "my girl you wont make the end of this week, you going to have that baby soon." even thou i was only 36.5 weeks...

I couldnt sit, I couldnt stand, little did I know I was already in labour, because when my little Horsie decided the morning of the 15th to make his awesome entrance I was already dilated, and ready to rumble, leaving it in GOD's hands, but he was breech and vertex, and he was coming quick. Suffice to say Daddy being the ULTRA cool calm man he is, even felt it necessary to brush his teeth while I GRITTED mine in contraction HOLY mother OMW this is *%*&^(*^& PAINFUL PAIN!!! So I got sliced, and at 3:30am Cullen Chris Cairns Croll was born...shame poor guy, look at those initials C.C.C.Croll

So as befitting for today on my Granny's Birthday, but who left this earth in February this year, to be in the company of a greater being, I say PLAN PLAN PLAN for Thursday, and give thanks for today, for without you Gran, I wouldnt be here, mom wouldnt be here, we wouldnt be who we are, and Cullen wouldnt be the absolute TEACHER of my life.

So here is to BROWNIES, CAKES or RICE Ice Cream for Thursday - lets see what magic hat I can pull them out of, and here is to a fantastic Granny and mom, who without their support, love, nurturing souls and absolute STRENGTH...

I would probably be LOST and peering out of some institutional window.
:)

Monday, 12 September 2011

NEVER been so HAPPPPPPY to have him have a bowel movement

WOW!!
You know the things we get happy about these days...are sooo different from what I would have been happy about a few years ago...

Bowel Movements are ONE of THOSE things.
Yes when you are preggers - ok maybe only me (maybe some of you too) PRAYED for your tummy to go and for the nasty CONSTIPATION to NOT be an issue...because it is PAINFUL!! ITS HORRID!!

Well...
Last week was a "PLEASE let his bowel movement come" week!
Horsie had fecal impaction - and if that medical term is not an indication of just how sore that might be...
His facial expressions and AGGRESSION (because he does not know how to say "MOMMY my tummy aches and I have so much pain PLEASE HELP") might be an indication.

Horsie is in NO WAY Aggressive UNLESS he is in SEVERE PAIN!

It all began last Monday morning on our way to Wiggles in the car. He began to BASH his head (like those You tube videos you see with kids who are severly mentally challenged do)
LET ME TELL YOU
It scared the LIVING    $*&*(&%$   OUT OF ME!!!!
I have never had that with my boy - so severe and then hitting himself on his head too!!
Moaning crying...
ME ALMOST LOOSING IT!!!
It freaked me out - I though oh my word...
and this after a few days prior almost scratching his pops' face off..

I thought NO...

WE ARE GOING 15 YEARS backwards...
Then I began to think of other times when he bit me or was slightly aggressive - it was due to pain or SENSORY OVERLOAD.
Look I am under no illusions that sometimes - my life - my feelings and anxieties rub off on my son, my family, and so I started scrutinising why my boy was SOOOOOO AGGRESSIVE and the head bashing thing...

Was it :
1. Due to concert practise - a lot of sensory overload, change of routine (BIG NO NO for kids with Autism)
2. Due to me having a major life change- in my resignation from work - CHANGE IN routine (BIG NO NO AGAIN!)
3. Me worrying about all of this - feeling stressed, anxiety etc etc etc (BIG NO NO FOR A BOY WHO FEELS ALL OF THIS WITH ME -IF NOT MORE IN EXAGGERATED VOLUMES)
4. GI (Gastro-intestinal) PAIN!!!! Severe GI PAIN!!!!
5. ALL OF THE ABOVE!

Well I went with all of the above! Got our wonderful Dr Louise from Cape Town to email a x-ray form, we did a abdominal x-ray and low and behold - huge fecal impaction (Where pooh is literally stuck in his colon causing severe pain - if your child has any dietary restrictions it could be a problem- duh we have many many restrictions.)

So we started with pegicol, after 8 sachets nothing (NOW THAT I THOUGHT WAS A LOT)- I also asked his sweet principal to lessen the sensory overload with the concert, which she did with absolute pleasure and love, and that helped!
I am trying...I repeat trying...to be better at the anxiety thing too...(Easier said than adjusted).

Its 1 week later, almost R1300-00 spent, after excluding sinus pain, x-rays, meds, doctors bills et etc etc
and my HORSIE  is smiling again. He had 5 LARGE BOWEL MOVEMENTS...and we were so HAPPY!

YES...why?

He is himself again...
PLEASE LORD let this be a good good week! A good bowel week, a good sleep week, a good play week, a good time week,
Its his 5th BIRTHDAY THURSDAY...
We do not want any fecal anythings...
ONLY SMILES< LAUGHS< LOVE<HAPPINESS<GRATEFUNESS
AND LOTS OF KISSES

Friday, 9 September 2011

"Perseverance"

Ok so perseverance...
According to an online dictionary (because time right now is VERY PRECIOUS), perseverance is defined as a "steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement."
Well well well...
REALLY?
I think I am one mommy of many (whom I have got to know through our beautiful angel school sent from Heaven with angelic teachers and principals.)
who struggle so much to persist, to have tenacity, pertinacity  be resolute and unyielding holding on, follow a course of action.

"Perseverance  commonly suggests activity maintained in spite of difficulties or steadfast and long-continued application." Jeeez we are perseverance soldiers.

It has been a challenging time for us with horsie and ladybug. Believe me...and so when that word/action comes up I am all to happy to hear what people say regarding it.

I read an article by Judith Ancer in the Sunday Times (She is an Educational Psychologist) last weekend, that described how a parents' MOST important value should be perseverance.

Does she realise what she is asking?
Raising our horsie who has Autism, and our ladybug who also now has Asthma (and I suspect food allergies), that is ALL WE FOCUS ON - is PERSEVERANCE, PATIENCE AND LOVE!!

If we do not follow through with our bio-medical approach with him, his gut (TUMMY/COLON) lining will not heal and his immunity and brain will be subjected to a barrage of toxins, bacteria, pollutants and alike, for all time, losing him completely forever in a FOG of opiates (Wheat, Sugar, Soya, Diary) that just send him into drunk enduced spinning and laughing, which seems altogether something out of MY WORST NIGHTMARE!!!

So yes MS. Ancer I KNOW PERSEVERANCE!!! And guess what its only our beginning - we are looking at ABA THERAPY- SPEECH THERAPY - which involves repetitive, very interactive one-on-one intensive sessions, to enable our horsie who has (APRAXIA) a type of motor planning disorder related to speech. Its exhausting and requires hours upon hours of perseverance. So YES  YESand YES AGIAN...we know all too well about PERSEVERANCE!

Yesterday while shopping for my maybe 8000 packet (I don't really know the number but fear it may be round this number) of nappies for my Horsie, when I came across a mommy in the BABY CITY, almost yelling at her sweet TALKING inquisitive child, to STOP IT STOP IT!!! It gnawed away at me - I almost and those who know me - know this would not have been a problem to do - but I almost grabbed the silly idiot mother by the pony tail, and said, JUST ANSWER YOUR CHILD - JUST SPEAK WITH HER - She is trying to gain your attention, your approval - YOU ARE SOOOOOOOOO Blessed you IDIOT for a child who CAN talk - WHO WANTS TO COMMUNICATE and LEARN with her enquiring CLEAR FOG FREE BRAIN!!!!

But I thought...nope this is my stuff, this is my work, to stand in this que, WATCH and realise that we are different, we deal with different issues at different times and stages, and that's ok!!

Perseverance...well that's high on my "I'M DOING IT LIST"!!
PATIENCE THAT is still on "I'M WORKING AT IT" LIST and LOVE WELL LOVE HAS ALWAYS BEEN THERE!!!

HERE IS to tenacity, persistence and unyielding love, patience and perseverance!
Horsie and ladybug  the great Teachers of my life.
 

Sunday, 28 August 2011

Broken Boobie

One of the MOST excruciating pains of having our HORSIE is the occasional boob BITE!!!!
Let me tell you...ok some of you may be laughing so hard you cant read any more...
but let me tell you...it HURTS DAMIT!!!

I am on boobie bite number 4!!!!
Somehow Horsie manages to bite down hard either just on the softest of my boob flesh or
even once on my nipple.
Now for an almost 5 year old...(Horsie is 5 in 2 weeks) this ain't pleasant!!!

What is even less pleasant is not the blood pouring or oozing depending on the severity and depth of his gnasher bite...
Its my total OVER REACTION...
I am shameful...it is shameful...
I know our boy does this in times of PAIN, stress, excitement or exhaustion...
and you would think by the 4th bite I would be able to resist my over reaction...
and NOT Swear...not feel completely HURT and feel sorry for myself...

But no...I think even if it was the 29th time...I would hurt.
And not just physically (it takes a few days to heal - and it looks nothing like a love bite or "hickey" as we all used to call it - but it hurts emotionally too.

It hurts because again...I have to confront the fact that our horsie does pain, does have stress, does get over tired, over excited and instead of being able to TELL ME, SCREAM AT ME - he BITES...how ironic that its the boobie bite that is most painful, almost like he intuitively knows, that is my real SOFT SPOT!

I don't know what was bothering Horsie today, but he was a tad bit aggressive...which is not him usually...
A common issue with children with Autism is GI PAIN (Colon, gastro- intestinal pain) and I suspect that is what it was...how excruciating...
I eventually gave him a voltaren suppository to help him - for relief - he cant take any panado only ibuprofen or voltaren.

He is resting now and seems happier than he has been all day...
And me...
Well I am nursing a broken boobie...
and my heart hurts a little too!


Sunday, 21 August 2011

IT HAPPENED!!

IT HAPPENED!
Horsie finally TODAY pulled me by the finger - which he does to show you what he wants.
BUT TODAY it wasnt just for something to eat or drink or to push him on the swing.
HE TOOK ME TO THE TOILET...

Now I know I seem a little STRANGE to be excited about this progessive move.
But Horsie doesnt do Toilets and at his weight almost 26 KG, and almost 5 years old- nappy changing is becoming a bit "HEAVY"
(Pardon the pun)
So I opened the door (We keep it closed as Toilets can be seen as a water playing haven) AND
He was tugging at his pants and I realised
BING BING...

HE WANTS TO USE THE BIG WHITE PORCELAIN TOILET


So I quickly pulled down his nappy and pants and helped him sit
HE DID IT
He made his number 2 and a little number 1....

MY BOY USED it!!!!
He actually got my attention - took me to the spot and used it in the way it should be...
(MAYBE years from now - he will hug it after a few too many - I dont know Amstels)
BUT MY HORSIE actually "PLANNED" his need and followed each step to the end.

THIS IS A MAJOR break through...

Although it didnt happen again for the REST OF THE DAY
IT SHOWS PROGRESS
For all the hours Wiggles and Squiggles have put in
For the last few weekends WE have tried...

IT SMACKS OF POWER
HORSIE POWER

SO PROUD...
LETS MAKE IT A HABIT!

Wednesday, 10 August 2011

When pigs fly...NO when time flies

I want to so much be able to blog more often - but it seems as if my day job is just NOT co-operating!
Anyway now that I have that off my conscious...I can tell you the real motivating reason I needed to blog today!!!

Yesterday Ladybug and I lay in bed and munched breakies (Cereal and tea) and we watched. "under the Tuscan Sun."I know ironic for Women's day...LOVE BEING IRONIC!  Ok so it is a real girlie 'coming of age or maturity" however you want to view it "chick flick."
And would you believe it ...
I CRIED...

Yes...
But...
Not for the reasons most women may cry in this particular movie...
But as is custom in every way...in every instance...I am reminded of just HOW DIFFERENT our lives are..my horsie's life is.

There is a particular part where (toward the end of the girlie pop movie) the main character realises the WISH she wished all along about having a wedding and raising a family in her Tuscan Villa, was now complete - but the tweak to this was that, it was NOT in the way she thought initially.

The same realisation dawned on me - wow - wow -wow!!

I mean here I was my entire life preparing for my Horsie, and for my ladybug - without ever fully realising it.
My psychology studies, my friendship with my cousin who has Autism (since we were babies ourselves), my career choice in pharmaceuticals, my interest in diet, food, supplements, my best friend (STN my sanity saver), my renovation of my house (all on one level, tiles and VERY CHILD FRIENDLY!) my family, my mother being 1m away if need be, the therapists Ive met along the way, the angels at Wiggles and Squiggles, the friends who I hold dear, EVERYTHING...

It all in that moment, as the movie character realised her life was what she wished for...but maybe not in the way she expected...it all, came flooding in...that was my life...

A life anything but what I imagined...a life where pigs MAY JUST FLY, where time is such a precious precious sacred INVESTED "jewel"..even more so with every passing day!

Horsie is turning 5 soon..
5

When time flies...
Let this next YEAR...allow HORSIE to fly...
Potty TRAINED and communicating basics...
Now let that be MORE than I imagined...let that be my Tuscan Villa my happy place.

Wednesday, 27 July 2011

TOOTHE Tales

Our Horsie proudly displays a gummy smile...ok albeit only one tooth missing...its still a milky out..
oh where oh where is it...exactly...
We dont know...
Monday morning he left a little boy with all his teeth in tact and Monday night he came home without his first ever baby tooth, that popped up at like 4 months or something ridiculous like that,,,that all seems an entire different life ago...when the ordinary milestones of teeth, sitting, standing, crawling, walking, TALKING were how we measured life, how we measured our horsie...how far we have come...

So in a normal setting...
This would be the start of TOOTH FAIRY TALES...
The start of replacing yuky milk teeth with money...
of make believing in the amazing little mouse or fairy or whatever with a penchant for collecting teeth and all things toothy...

But for us and Horsie...it is total different game we play...
Horsie doesnt even realise he doesnt have a tooth..or rather that a tooth is missing...
There are no tooth fairy stories and money issues...
What IS a PROBLEM is not knowing what happened to it...did he pull it out himself? How long was it loose? Where exactly did he throw it...
Enter nightmares of a different kind...ATTACK OF THE KILLER RETURNING MILK TOOTH...
Did he swallow it? Start the JAWS music...dooooo.. dup ...doooooo... dup..dooooo dup

And with all the focus on therapies and the like...
We completely forgot about milk teethies falling out...

So instead of money weve decided a FRUIT Stick under his pillow will do...
That is more important and precious than gold for Horsie...
So the fruit stick fairy has dropped on by...yaaaaaaaaaay...
Love you Horsie

Friday, 22 July 2011

MY WAY

He did it his way...
My grandfather passed away today...

On one hand it is really so so SAD to lose such a legend of a grandfather, father, great grandfather...but almost relieved that he is at peace and happy that he is with my gran...who has been together for the past 57 years!!

Life NEVER prepares you for DEATH...

Life only gives you an opportunity to experience it - to savour it - to take it in- before you begin to experience death...

ROY RACE you did it your WAY...
What a legacy you leave...beautiful children, gorgeous grand children (me being one of them lol)...
and even more special GREAT grand children...
You and gran always looked at the best in each and every individual...

You played the horses, you ate ice cream, and drank hundreds litres of coke in your life time...
You worked hard and loved your sports...
In the last few years you really cherished every weekend with the great grandkids...

Jada was your cheeky chops...you welled up with tears every time you saw her, and even more so in these last few days when we spoke about her...
Cully poops was always foremost in your mind...
Aidan and Connor also each in their own right a favourite of yours...
You and gran lived for the kids...yours, your kids'kids, your great grandkids...

I hold onto to those smiling eyes, that whistle, and excited stutter...

Nothing prepares you for this painful loss..no exepectation of what is to come..NOTHING...

But you leave our hearts and minds filled with only good, rich, textured, beautiful memories and stories...

And you did it your way...
LOVE you forever and always...

OH BUT Dont get too comfortable, Gran is waiting to chew you out for all the steak and chips, coke and ice-cream you been having...and Chris well he cant wait for your next chip fry up...its been far too long.

Wednesday, 13 July 2011

IN AN INSTANT - A REMINDER - WE ARE NOT IN CONTROL

Well well...
No-one really knows this...
The starting point of this blog...
How it began...

It began just after I lost my granny in FEBRUARY this year...
THE MOST GRACIOUS YET STRONGEST (both in soul and mind - nevermind physical) WOMAN I know besides my mommy...
Loosing Gran so suddenly to a stroke...really made me realise YET AGAIN that WE are so NOT in control - yes we can control our daily decisions but ultimately we do not know when...we will go...and whether will be ready to go...

So a blog has offered me an opportunity to share my gorgeous children and our challenging fun filled time together.

Yesterday...a 7am phone call resulted in my "pa" grandfather being eventually admitted to ICU - a heart attack...and for me yet another instaneous reminder of JUST HOW MUCH WE NO HAVE NO CONTROL OVER many many many things...like...a heart attack.

Yes we can eat well, we can go for check ups, exercise, live well with intention and be good souls (ALL THE MAGAZINES and HEALTH PROGRAMMES PREACH IT TO US), but when your heart is broken after losing your partner of 57 years...well then your HEART is literally broken...and that WE DEFINITELY CANT CONTROL!!!

So in the midst of a HUGE WORK WEEK of BUDGETS ETC ETC ETC...a reminder...again...

LIFE IS PRECIOUS...

TREAT IT WITH RESPEC ,WITH LOVE, WITH THE UTMOST APPRECIATION!!!

So I begin by saying how much I appreciate my horsie and my ladybug...
What a different life I am living...
How lucky to be apart of their beautiful lives and share in their souls...

My little horsie satrting HORSIE LESSONS on Monday...and this is WONDERFUL...its call HIPPO therapy although nothing to do with big stomping HIPPOS...and everything to do with stability, the motion of a Horse and the therapeutic effects of riding...

The riding instructor (who I have yet to meet face-to-face) says she had a child who did not utter one word begin to speak with just a few lessons and talk to his CARROTS! (His Horse)

Now dont laugh... but my little Horsie's horse is called DILLY...ironic dont you think...

What is NOT Dilly is how much Cully loved this hour...he smiled from ear to ear...
This is a reminder of the small things...the things we are NOT IN CONTROL OF...but which we should value and be thankful for...

To end this post:
A BIG THANK YOU AS ALWAYS TO MY MOMMY WHO TEACHES ME EVERYDAY IN EVERYWAY HER SELFLESS STRENGTH...something I know she learnt from granny Ann...love you both like crazy and Pa NO giving the NURSES tooo much trouble in ICU...GET BETTER QUICKLY your ladybug and horsie missing you.

*HUGS and KISSES and love to all my friends and family always every day in every way*
Cliched...but hey...lifes' too short right now to come up with anything better at this moment...

Sunday, 10 July 2011

Progressive MOMENTs

OUR HORSIE...can sip from a glass, hold it without just throwing it down....
Are we crazy for even blogging about something as simple as this...?

NO...

This was a big HURDLE and will always be something of a challenge...Horsie...has been able to sip from a cup for some time now...but holding on it and gently placing it down when he needs to...that has been the HUGE EVEREST!!!

But for tonight...and it may ONLY be for tonight ...
He held my glass of TAB (Not something is able to drink often - strict diet and all)
He sipped...sipped...sipped...
Became almost obsessed with the bubbles and texture...
BUT the biggest thing...
He did not... JUST throw it down...he held on to it...

AND WE SMILED...
WE MADE EYE CONTACT - LOTS....
WE EXCHANGED KISSES (some with tongue)... *wink*
AND WE BASKED IN THIS MOMENT...

OUR BOY IS PROGRESSING...

He may be the tortoise and NOT the Hare...
BUT WE WILL GET THERE...
SLOW and Steady...
PROGRESSSIVE MOMENTS

Tuesday, 5 July 2011

CREATIVITY - the key to dressing a 2 and a half year old

Ok so this blog has been neglecting the other increasingly interesting aspect of our lives....the challenging 2 and halfs...
Ladybug...whoaaa...she is giving us a serious run for our patience...
CREATIVITY CREATIVITY CREATIVITY without losing our sense of humour...thats is the challenging part...

JUST to get our ladybug dressed in this freaky stone age weather...at night after a warm bath (which you would think would be easy right?) is a aaaaah ok 1....2.....3.....woooosaaaaa....dont lose it moment...

Hubby decided to hell with the "HOLD HER DOWN AND DRESS HER APPROACH WHILST SHE KICKS AND SCREAMS HER HEAD OFF GOING RED HOT IN THE FACE WITH REAL TEARS RUNNING DOWN HER ANGRY FACE" ....yes people these are the AWESOME TWOS....we never got to deal with this stage with our Horsie (WOW one thankful thing I missed out on actually)

He decided "bootcamp" with exciting thrilling lets jump up and down, stretch your legs, stretch to the ceiling, sit down almost a SIMON Says game was the way to go...and well yes...it was...simple YET HIGH EFFECTIVE!

WOW Sheer BRILLIANCE...

She was HOOKED...copying daddy as he sat down, jumped up, stretched his arms,legs almost injuring himself....(and not in the way he likes) with all the thrilling exciting smiling "this is THE BEST GAME EVER" enthusiasm you have ever seen...long enough for me mamma bear - what you ma-call-it-do everything-quick -without-too-much interference person, dressed her pice by piece, first her vest, then PJ top, then a nappy (ladybug still wears one at night), then long-johns, then soft PJ pants, socks and even a quick brush of the hair (NORMALLY AN IMPOSSIBILITY)

This game ROCKED...and you know what else rocked...my stomach muscles...from all the laughing...
We managed to get our ladybug dressed, ha ha we fooled you while we all laughed and played...CREATIVITY...the best start to trying to deal with your two-something-year-old and their independence and boundary jumping nevermind pushing...

Interesting times...

Where was Horsie in all of this...watching...smiling...not fazed...
Storing this data for when he will use it...one day...

ONE DAY SOON...progress for us all

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...

Tuesday, 31 May 2011

SLEEPING SIDE BY SIDE FOR THE FIRST TIME EVER

HORSIE has never really enjoyed sharing "his space" with anyone other than his nana, mamma, and dadda when it comes to sleep time!

THIS IN ITSELF IS proof of A MIRACLE!!!!!!

Ladybug and Horsie sleeping within an inch of each other  - calm, BEAUTIFUL!!!!!!

So Blessed!!!

POOP scooping

Ok so I am laughing my ass off...

My hubby is scooping Horsies poop from his nappy into a REALLY SMALL container to be analysed. with every scoop he is gagging...I would normally do it, in fact I did do it the first time two years ago...but my tummy was a little "dribbly" as my sis calls it and so delegated the poop scooping to hubby dear.

I am standing behind him...sniggering...laughing...I mean here he is in our kitchen (not very hygienic I know - but where else is there such good light and airing) scooping 5 scoops of our boys PUNGENT SULPHOROUS poop...eeeeuw in this maybe 2cm tube thing...

He gets it done...with both of us howling with laughter at the RIDICULOUSNESS of this scenario...poop scoopers...another job we never ever thought we would be completing...unless we decided to become dog trainers/walkers or the like.

We then spend the next 5 minutes arguing as to whether the poop sample should go in the fridge or the freezer?  My thinking - eeeeuw I dont his microbe (forgive me Horsie you are my beautiful boy but your poop still has microbes, etc in it) poop sitting next to the Wollies organic bananas, newly mixed gluten free wheat free sugar free flapjack mix nor anything else for that matter. Hubby's thinking - the INSTRUCTIONS SAY IN THE FRIDGE IF COLLECTED for courier next day OR in FREEZER IF COLLECTED ON A WEEKEND and to be couriered more than 24 hours later. YES the caveman - men are from mars - technical brain - NOW decides he is going to follow instructions!!!!!! TIMING...its all in the TIMING.

Anyway I LOST and he nestled Horsies poop sample (Ok airtight in a sample container within another jar thing within a zippy bag) between the condiments....yes CONDIMENTS...at least they are closed and not influential or partial to microbial anything....

Why are we collecting poop?

Our boy got to see Dr Lousie Lindenberg from Cape Town last week Thursday - and wow what any amazing lady. Calm, super smart, and best of all made me feel like the BEST Mommy EVER with all that we have done so far with Horsie.

So...
 Poop collection it is... for analysis - to look for candida in particular - which affects many many many children with Autism, and can be easily sorted for clearer more focused brain functioning.

Then BLOOD TESTS....oh man...how I am dreading those. We did bloods two years ago too...and that was TRAUMATIC!!! With Horsie now being 27kg and 4 and half years old, he is much bigger and stronger than his 2 and half year old self.

Hyperbaric Oxygen Chamber Therapy is another of Dr Lindenberg's strong suggestions...got that started under our belts too. I have been for 2 sessions - to get used to the pressure involved (15m below sea level with 90% oxygen pumped in at that level) and the small confined SUBMARINE feel (so to speak) before we even try to get Horsie in there. (thats an entire different blog entry)

SO here is to poop scooping, blood taking and pumping oxygen...sounds all too scientific/technical/alien - BUT willing to do whatever it takes if it means our boy IMPROVES albeit tiny baby steps...

Tuesday, 24 May 2011

IMPOSSIBLE IS NOTHING

CULLEN's ACTION FOR AUTISM GOLF DAY 17 MAY @ Roodepoort Country CLUB was a COMPLETE AND UTTER BLESSED SUCCESS!

A huge thank you goes out to all the sponsors including Le Morgan, Powercare, Optus Brands, Imperial Toyota Park Town and Strijdom park, Plasser Rail, Phakamisa Industries, Mimmos, Mikes Kitchen (Gordon Rd), West Peak Spur, Impala Fruit and Flower, Red Bananas Distributers, KSB Industries, Golfer's Warehouse, BRYANSTON Country Club, Roodepoort Country Club, Golfer's Shop Fourways, Landrover Fourways, Gardenia, Kodak Express Northcliff, Zena Jacobson Optometrists, Wayne Pringle, Dominic and Deidre Khourie, Adele Wybourn and Family,Bernadette from Burnies and Family, Boris & Shirley Gerhard and family,Tarryn Gandy, Simon Baldree, Jonothan Eager, Jeanette and Donovan Walker, Shane Macgregor, Sharmane Majendie Kennedy and Family, Christine Mansour and many other private wonderful donors.

Without the sponsors, prizes donated and the players who played the day would not have been half the success! 3 ra ra ra ra ra ra CHEERS to you all!!!

This will be an annual event and we are hoping that it becomes even bigger and greater and more memorable every passing year.

WEDNESDAY 11 MAY pre GOLF DAY was miserable but then...we decided...impossible is NOTHING and what a success and beautiful day it turned out to be!

Thanks to all involved again!

PICS to follow shortly...

CAN YOU SAY EXHAUSTED!!!!!!

Well well...its been far too long! This month of May has literally left me feeling completely wrecked!!!
I feel like nothing ABSOLUTELY NOTHING I do  - can help to ease this EXHAUSTION!!!!

Work, crazy long hours work, no domestic helper for 4 weeks and kiddies will do that to you but wow - really moeg!!!

Any suggestions - anyone?

On the up side - just last nite whilst trying to get kiddies to bed - we lay on the couch cuddling.
Ladybug has since my going away to conference decided nope - NO MORE GOING STRAIGHT TO BED IN HER ROOM - SHE IS GOING TO SLEEP ON THE COUCH!!!

So begins our nightly ritual, pillow and blanket to couch Lady bug on couch - oops then she remembers that school is teaching her to pee pee in the toilet before sleeping - so off the couch - take nappy off pee pee in the toilet - put nappy back on - re dress - back to couch - oops - lets read a book - off the couch - back on the couch - read book and so on and so on and so on...that little stint in itself (JUST WRITING IT MAKES ME TIRED) is exahausting. so just when I thought I had one kiddiwinkel sorted sleep wise (well at least going to sleep)....that big bubblegum bubble has popped and splattered all over my face.

Anyway back to the story - so we lay on the couch and Horsie decides to cuddle up to his little ladybug and makes himself comfy by pulling the blankie over - and then to my amazement - he turns toward ladybug and holds her hand!!!!

I mean holds her hand - and she ofcourse was thrilled and smiled ear to ear - and said Cully hold hand hold hand. It was the most precious few seconds we have had this week.

      ...and in that moment the TIRED DISAPPEARS...

Saturday, 30 April 2011

SMOOCHEROOOOSSSS

SMOOCHES from our Horsie has not always been easy to come by...
Autism has a way of taking those precious moments away from you SLOWLY and Heart breakily (If that is even a word). We lost our Horsie for a while...when it came to hugs and kisses...he would push us away...be almost REVOLTED by the possibility of it...
BUT the last few weeks there has been a change...

Horsie now when asked for a KISS gives it freely albeit quickly...
YAAAAAY!!!

But today he smooched without asking...he walked up to me and slid onto my lap and gave me a big kiss...we were spending some quality alone time watching DUMBO (one of his all time favourites...)
on my bed in my room...CHILLING...and it was sooo unexpected but...he did it!!!!

BIG LIP SMACKING SMOOCH!!!

This was the second time in 2 days...the night before I even got some TONGUE he he he he...

My ladybug...she is a smoocher of NOTE...anyone that knows me would easily say..."takes after her mother." She is such an angel pie...says I LOVE YOU so quick and with such conviction...so precious...

SMOOCHEROOOOS...
So thankful Horsie and Ladybug CAN give them....

Thursday, 28 April 2011

SILLY NILLY Things we can all do...

Well I have just received my statement for MY SCHOOL SUPPORTERS CARD.
I have in the last month or so contributed R70 to Wiggles and Squiggles through MY School Supporters Club...this silly nilly little card although a little bit irritating to others behind me in the Woolies que, has given R70 to My Horsies school.

My heart leaps and I am sure we can all do our bit!
Please if you havent already got a myschool card...go to their website...www.myschool.co.za or send an email to cs@myschool.co.za with your details and choose a school to whom you can donate your shopping trips to...who will receive extra monies for their school and if you do not have any school in mind...

PLEASE PLEASE choose Horsies' WIGGLES AND SQUIGGLES in Boskruin.

You would be contributing to a school where miracles and possibility surround our kiddies! AND with your help small MIRACLES can become HUMUNGOUS!!!!

Sunday, 24 April 2011

CONGRATS TO STACEY VEE


WELL DONE STACEY on your blog being featured in LIVING AND LOVING! http://lionheartinourbathtub.blogspot.com/

You got my ball bouncing...never mind rolling...in starting my blog!
Mega doses of your humour, strength and resiliance has gone a long way to making my day...on numerous occassions.

Have a look at May 2011 addition of Living and Loving for other blogs featured such as Tertia Albertyn's http://www.tertia.org/ or Tanya Kovarsky's blog http://www.tanyakovarsky.wordpress.com/

Have a great May month everyone!!!

HOGWASH HAPPENS!!

Ok so the HOGWASH all our moms feed us about how wonderful, special and great it is to be a mother...well I think that on those days where all those fuzzy wuzzy tingling feelings are remembered and experienced are the ONLY times that our mothers' remember and then SPOON feed us as we grow, as we think about procreating...

If they fed us the real dirt on just how TOUGH, how much of yourself you sacrifice, how lost you feel at times and how much despair, inadequacy, and how utterly scared you are as a mother at times...we would NEVER really even think of opening our wombs for love, life and all that our beautiful horses and ladybugs offer.

Both my beauties are sick...YES AT THE SAME TIME!!! It is horrible because you cant fully give of yourself to both, and in this weather the CABIN FEVER is reaching EPIC A-BOMB levels!!!! Thank goodness for family and friends who rescue us in their special own ways. (you know who you are!!!!)

It is AWEFUL HARD to know why my horsie is feeling the way he is...all crazy and upside down...why? Because he CANT EXPRESS IT TO ME- HE CANT tell me! So I play a guessing game, which sometimes ends up with a BING BING light ringing mommy wins and so does Horsie cause we can work with what we know...but sometimes like today, we fall short, mommy loses, and the consequences is that - I got bitten twice today.

BITTEN - not in the nice sense like BELLA desires from EDWARD in Twighlight with romance seduction and HOT....mmmmm...(Keep it clean) but with FRUSTRATION and pure "YOUR NOT LISTENING TO ME" angst. Horsie bit down sore and hard on a region of my body which used to allow for his nourishment and care, but now shows all the signs of a mommy of two (try use your imagination here), as well as on my arm.

The pain at first although really EINA... fades... its the pain of realising he is FRUSTRATED and used his only method to get me to listen...as I wasnt before he bit me. I feel sorry for myself and escape to the bathroom...crying tears of anger, of hardship, of toughness...why me, why did I have to be "blessed" as everyone keeps reminding me of...of this freaking AUTISM!!!!! (Note my horsie - his AUTISM!)

My beautiful horsie...my boy...why? It is tough, it is hard, it is challenging, its definitely NOT for sissies!!! So this HOGWASH from our moms about how wonderous motherhood is...well...maybe due to either their brains wired differently to mine, or they choose to forget the tough times to rise above it, to remember the OUT-OF-THIS-WORLD times...

So yes I had a YUK day...it wont be the last...but I also have soooooo many super GREAT days...

So here is to the HOGWASH our mommies fed us and keep feeding us!!!
Without mommies we wouldnt be here, we wouldnt sacrifice, and we wouldnt LIVE life fully!
Here is to MOTHERHOOD
HERE IS to being SOLDIER GIRLS!!!

Saturday, 9 April 2011

TALKING and GONNA GET YOU GAME

TIRED...
Not because of Ladybug and Horsie who have been super good today...but tired because for a change
these last few days have been so FREEING...so Free in fact, that I feel a little more like the old "care-free" me, the me that doesnt worry constantly about Horsies progress, about what to do next (in the 10 million line therapy list), about Ladybug and her emotional, physical, cognitive development, about finances, about "WORK/LIFE/HOME everything FRIKKEN BALANCE, about when we might get to go on a really awesome holiday, about when there may be a gluten free, sugar free, wheat free, gliadin free, egg- white free, diary free cafe open with OT type equipment for Horsie to play on while I sip away at my new addiction in the form of de-caf cuppuchino...so just a little FREE of some of that....

Why do I feel free?
Well for starters...I do not know...
It may have to do with STN? (Sister Thrusday Nights, of which is an entire blog on its own-which ofcourse has become my survival weekly tool) or that a certain night with good friends made me realise just how far removed I have been from my authentic self (sound "oprahish" but so true), or that my mom (nana) our hero had some awesome feedback for us Friday.

Nana who has been on Horsie holiday DUTY for the past 2 weeks (boy does she need Urbanol and a looooong solitary holiday lol)...had the most wonderful "TALKING" day with our dude
on Friday. She sent me this sms at 11am Friday morning:

"Culley Just too clever he said "Kyou"(THANK YOU) this morning when I gave him his flapjacks and now in the shower, he clearly said HAPPY - he's been in there for 15 minutes already!"

Ok so I ask you...is there any better message any mamma could receive than THIS?

Wow wow wow! TAlking progress...and our speechie agress. She says horsie has had a break through...leaves me feeling WARM and FUZZY and appreciative.

So Free, free because I want to start acknowledging that MAYBE just MAYBE just in the far side of my heart I am allowing myself to begin to believe just a little that...we are slowly getting our beautiful HORSIE back...that just MAYBE we CAN ease his frustration, and believe that the power greater than ourselves is teaching us to TRUST and LET GO....BE FREE!!!!!!!
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