Thursday, April 30, 2009

A little understanding goes a long way...

It sure does, these words head the campaign by Autism South Africa for the awarness they continue to create.

I have been amazed and excited and hopeful the past few weeks - as nearly every single day i have seen something to do with Autism on tv, in magazines - all around us - so much awareness is being created, its fantastic ! This will hopefully help so many people understand what Autism is really about and hopefully open their minds, hearts and spirits to understanding and learning more about it and how they can help our kids make sense of this planet and our home called earth.

I first wanted to tell you ( the folks in South Africa only sorry) to watch Movie Magic 4, i think its channel 104, Saturday morning at 0730am - i know its early but if you up to it , watch Autism - a musical - a saw the end of the movie the first time it was on, so CANT WAIT to see the entire programme - its about a group of kids on the spectrum that put on a concert, something that many would say is not possible - this really touched my heart as one of my prayers for Deqlan each and every single time i pray , is the gift and honor and privilige to see Deqlan in a school play or concert ...so hope you enjoy the movie as i know i am going to - again maybe a little more understanding will go a long way....

Deqlans favorite treat at the moment is to run around and look at cars and ran up and down drive ways studying them from every angle - his favorite at the moment, hands down is Toyota 4 x 4's - he loves touching the letters T- O-Y-O-T-A - he runs to each wheel touching his mag and symbol of the brand - and around the car we go and back to the letters, up the drive way, to get a different look at it and back again - now i know there are some wonderful people who dont mind a very energetic gorgeous 2 year old touching their car, but some, we dont know us, are not to pleased and I have had some ' u hums' and moans when they see Deqlan touching their car - i wish they could understand a little more...so maybe i should be the one to knock on their doors and introduce Deqlan and tell them how fascinated he is by cars - and that his plan is surely not to scratch them , he just wants to admire them!

We are off to a wonderful dietician now, who has helped lots of kids on the spectrum - Deqlan is doing amazing on the diet - but we feel he is now very bored of the 3 or 4 meals he does eat! We are hoping Maryke can guide us on how to get Deqlan eating more vegies and more variety ! Will let you know how it goes. But i am SO GLAD we ignored the advise of those who told us not even to try the diet - wow - if they could see Deqlan now - he has hardly any red flags - no more spinning, no more lining things or us up, his eye contact is amazing -he is making new sounds every day and trying so hard to talk - he watches our every word and i know he is taking it all in, just waiting for his mouth to open and talk to us...i feel it, more then ever, its coming!!! We are so proud of Deqlan its so hard to put into words!

We are battling a bit with speech and occupational therapy at the moment - quite simply - Deqlan doesnt want to be there- we are going to have a meeting and try and figure out what has changed and why Deqlan doesnt want to try and partake in all that he used to - why the things that used to calm him dont anymore....so ill keep you posted on that...i wish they could see Deqlan at home though, when he is in his comfort zone, how well he is doing....

speaking of zones, Deqlans favorite - is my car at the moment - whenever he is tired or overwhelmed , bored or excited, he wants to get in his seat at the back of my car - sometimes its ok to just sit and read his books, other times, we got to drive and drive far- Coldplay has become the cd of choice, for us both, i am glad to say! At least this calms him down and gives us some more time together, so if i have to do it a hundred times a day , i will!

Over the past few weeks i have seen an hour long programme on CNN debating vaccines with Jenny Mccarthy and Jim Carrey( dont even get me started that will take me a lot nother week to discuss this very important issue in relation to autism) I have seen Ellen talk about her pen pal friend who has Autism and is brilliant - i have seen her interview Jenny and I have heard the inspiration and positive thoughts coming out of this Mother Warriors mouth - i have seen the South African add of the little boy who is left out of playing with his peers, because they think he is strange, linging their soccer boots up - but again a little understanding goes along way an they eventually involve him in their soccer game - i have seen the afrikaans Kids magazines running articles on autism - the list continues - there is so much hope for our kids - please give us the chance to teach you something about their world and you will see that their differences are in fact treasures!

Id like to share the latest entry from 5 minutes to tie up Autism Awarness Month

Some Thoughts as Autism Awareness Month Comes to an End…
Posted: 29 Apr 2009 09:00 AM PDT
The month of April is coming to a close, and with it ends Autism Awareness Month.
However, so many of us don't have an end to Autism. It is an ongoing, daily struggle filled with accomplishments, setbacks, discoveries, joy and pain. It is a journey, and the topography changes moment by moment. However, it is filled with the most wonderful people you could ever come across.
But we are fractured. Broken.
Split along lines that should not be there; dividing a group that needs to band together to help our children and our friends and family members gather hope and strength to face our special brand of challenges.
To help us weather this storm.
Here are some things I would like the Autism Community to really think about and consider making changes to in the next year:
§ Start thinking about what the future holds for our children on the Spectrum.
Our focus has been laser-like on the birth-to-three side of the disorder, and you will hear no argument from me that early intervention is key; but in our haste to put all of our eggs in one basket and cure! recover! heal! we have overlooked a large group of children on the spectrum that still need assistance - the Adults. All of these children grow up to be adults, and as they age, the assistance gets less and less. The transition from young adult to adult is equally as important to a child on the spectrum as it is for that same child during early childhood. We need to remember to look at their lives as a spectrum as well, and provide assistance throughout their entire lives.
§ Acknowledge that not all children can be "cured" of Autism, and that most are not.
This is what is fracturing the Autism community and giving false hope to parents. I am not Jenny McCarthy, my child is not "cured", and many of us need to be okay with that. My son is a teenager, and while he has grown by leaps and bounds, he still has challenges that will plague him the rest of his life. We need to be okay with the thought that this is a process. I tell my friends that have read Ms. McCarthy's books (I have as well for purposes of full disclosure) that I would like to see what she has to say in a few years when her son gets older. I think she will find that the "cure" she spoke of in her books is not the permanent one she was hoping for.
§ That money has been funneled into the wrong areas for far too long.
Many parents, myself included, are tired of hearing that more money from Autism charities are being funneled into discovering how this happened and which additives in vaccines caused this. Should we "Green our Vaccines"? Absolutely. Should we change the schedule? Probably. Should we be the only group saying this to the world at large?
no.
We need to find another soapbox that fits the needs of ALL of our children on the Spectrum, not just the ones who get the most air and face time. Not just the younger ones.
If you are going to Rescue an entire Generation, it helps to make sure you include everyone, no?
§ Start building a community; one that serves ALL in it.
I had the pleasure recently to spend time with a group of kids and their families that cancer had touched in some way, shape or form. What struck me deep in my heart was the bond these people share, the closeness, the support. People from all walks of life, celebrities, sports heroes, all donate time, resources and money to support and care for these families in this scary, rough and expensive time. And they keep on giving and many pay it forward after they no longer need as much help. The Autism community has nothing like this, and quite frankly it breaks my heart. If we had had even one-tenth of this amazing resource to help families share, bond, get assistance, and gather strength and hope; it would be amazing. If this help is available to us currently, it more than likely has strings attached. Strings of "cure".
§ Remember that we are not perfect, and that there is so much to learn.
Take a class. Listen in on a Webinar. Read. Discuss. Tell your story; don't be afraid or embarassed. We need to learn from each other. We need to spread the word. Autism and Spectrum Disorders are relatively new to the world vernacular, and we need to raise awareness. That being said…
§ Don't scare people by sending frightening messages related to Autism.
Don't equate Autism to a plague, or a horrific act. Someone who I follow on Twitter sends out messages about Autism that only confuse and frighten people. Scaring people into learning about Autism only mixes our message even further. There are many people who are coming forward and revealing that they have ASD and grew up during a time when many had no idea how to work with people who had Autism. Their stories are inspirational, and we need to pay attention.
§ Appreciate how far we have come…
Autism has had more air time in recent months than in previous years. That's a good thing. The fact that there are services for our children, therapies and interventions to help our children grow and function in society is something to be proud of. The accommodations in the schools and the support staff to help our children has increased three-fold. It's wonderful to see.
§ …but remember we have so much further to go.
We need to do more. We need to ask for more. We need to demand more. We need to ask for more services. We need to build an infrastructure to support our families who have no idea what to do or where to go when they are just starting down the road. We need to help those still struggling down that road. We need to work with the medical community to build a stronger protocol to get testing and services for our children earlier than second grade.
§ So let's get together and feel all right.
Let's get together on our global message and remember to include everyone, not just the people that fit a particular (cured) category. Let's work together to spread the collective word that while some children see great improvement with different interventions; let's remember that one size does not fit all, and we need to look at the bigger picture for our children. The lifetime picture.
So, same time next April then?

God Bless lots of love and thank you to you all for understanding and being there for us

MARK SAMM DEQLAN AND LOGAN
BY JESUS STRIPES DEQLAN HAS BEEN HEALED!

Wednesday, April 29, 2009

You are still my best friend Thomas

Keaton loved climbing into the bucket

Keaton in his train shirt

Deqlan very proudly modelling his train shirt from Grandpa and Nanna

How beautiful is this train? I really have a new appreciation for them since they have become one of Deqlans great loves
Such a cool photo i thought ( yes this one is yours my love) The train just leaving the station , steam, hooters and all!
Dad, Nanna, Deqlan and I waiting for the train to leave at 1330
Our family with our new family members, the trains!
Enjoying the wheels with Nanna
Deqlan was in his element - hope you can see the smile on his face!He was beaming!
The wheels were fascinating - actually the entire train was..
Deqlan carefully studying each wheel, each joint, each axel
Guess where we went on Sunday? Nanna did a bit of investigating a while ago on where we could find a real steam train.She found a company called Friends of the Rail in Pretoria , and we were lucky enough to be able to go and check it all out this past Sunday
Now we know that Deqlan doesnt like confined spaces, strangers, noise and not being able to escape a situation he is not happy in - so we decided to take him for a little taste of the train experience before taking him on a 2 and a half hour journey that we wont be able to get off , if our soldier decides he wants off!
Deqlan had a little nap in the car and when he woke up - i wish you could have seen his face - we were parked right next to a real life size steam train. He had the biggest smile ever. He ran up and down the train about 100 hundred times - studying each detail - he continued to look at Dad, Nanna and i smiling as if to say , 'are you seeing what im seeing?' " yes, my boy! I know its a real train!" we were so happy for Deqlan. We let him run up and down and enjoy each moment and then decided to try and take him to the actual steam train departing that afternoon.
We wanted to see his face when he saw the steam and smelt the coal and heared the whistles and sirens. Deqlan was not impressed. We tried to explain to him that we were taking him to see something even better then the train that was standing still on the tracks! a real moving, working train! Deqlan was not having it. He thought we were taking him away from his new best friend and wasnt interested in the real deal - he continued to remain upset because we took him away from the first train. No matter what we tried to highlite on the working train for him - he cried and wanted to get back to the old train. So off we went...
On the way back a beautiful, shiny, flickering windmill caught Deqlans eye , and thats were we stayed for a while - enjoying his windmill blowing in the breeze! Dad got Deqlan real rail road buttons and Nanns got the boys a beautiful train t shirt each - to beautiful. We thought we would just sit and wait until the actual train left and that would surely catch Deqlans eye.
While we waited ,we noticed a kids birthday party on the train ! What a cool idea! A little friend bought a present in a Thomas gift bag! Bad idea! Well, for Deqlan to see it, it wouldnt get to the intended recipient if Deqlan had caught a glimpse of it! Nanna and Dad really did a great job in blocking the view of the Thomas bag and the party continued Thomas bags and all.
We heard the train was getting ready to move - so we picked Deqlan up to take him to the front of the train, to give it one more try...the conductor pulled the horn and blew steam especially for Deqlan to enjoy - but sadly he didnt - he wanted to go back to the original train..we watched the train leave and imagined ourselves on it some time very soon in the future!
We will definitely be taking Deqlan back again to his good old friend that stands still on the rail line and perhaps a longer sleep will allow Deqlan to entertain the idea of watching the real deal!
Deqlan loved looking at the brochure though afterwards and continues to cherish and love and adore all things to do with the rail road, especially his best buddy Thomas...although, Deqlans tastes have started changing the last few days again, to .....CARS! Especially Toyota's - but thats a whole nother story for another post!
Sleep tight, God Bless, please continue the prayer for our soldier to remain NED always - please pray for all our friends around the world, the angels in heaven and their families who miss them, please pray for the cure
Lots of love
Mark Samm Deqlan Logan
BE STILL AND KNOW THAT I AM GOD

meeting Abi!


A very proud Mommy and Abi!

We had the honor of meeting Miss Abigail Combrinck last week - she is to beautiful for words and so precious , what a gift from God! Nats you are beaming and glowing and you are such a fantastic Mom! God Bless, lots of love and cant wait for you to play with Deqlan!

Tuesday, April 28, 2009

Paddling for a cure

Hello Everybody

I wanted to remind you of the amazing mission and amazing mom is about to embark on to raise funds to fighting neuroblastoma! Karen , Kates Mom and her Aunt or about to take on the Grand Canyon! I couldnt be prouder to know you Karen and wish you Aunt Maryellen a very succesful, safe and prosperous trip! We look forward to following with you and enjoying your adventures! I am delighted to see you have gone way above your goal and hope the figure continues to climb and soar and lead us to the cure! We are so proud of you and will be with you in spirit and mind and prayer! I know your kids are so proud of you, especially gorgeous Kate!
God Bless, hugs and love
Mark Samm Deqlan Logan

From paddling for a cure:

"I'm afraid we've found something serious." I will never forget hearing those words on the afternoon of April 4th, 2007. That was the day I first heard the word Neuroblastoma. That was the day I found out that my baby girl had a rare and often deadly form of cancer.
Thankfully Kate is now among the lucky and blessed few who are survivors of this horrible disease. (To read more about her journey, visit us on CaringBridge.) But in the two years that have passed since her diagnosis I continue to be amazed by the very low levels of funding that go towards pediatric cancer research. Similarly, not enough money goes towards the development of new, better and less toxic treatments.
This May, my Aunt Maryellen and I will paddle raft the entire length of the Grand Canyon over two weeks time. We'll sleep on the shore of the Colorado river at night and raft it by day. Make no mistake - this will be a wonderful adventure although I admit I'm not sure how I will handle two weeks without my kids - or a shower! We'll cross more than 100 rapids, including the wildest navigable river water in all of North America. We're calling this adventure "PADDLING FOR A CURE!" and we're doing it to fund the development of a new treatment for Neuroblastoma.
PADDLING FOR A CURE will benefit the Band of Parents. I stand proudly as a member of this non-profit organization. We are a group of parents who are directly funding the development of new treatment options for Neuroblastoma. Many members of the Band have children in active treatment and are desperately waiting for these options in the hope of saving their own kids. I am not exaggerating when I say that your dollar(s) may make the real difference between life and death. Please click on the link above to read more about the Band and our work.
Maryellen and I will be honored to see your name on the sponsorship / donor roll below. Your positive energy, prayers and support mean so much to us and the members of the Band of Parents. Thank you!

Friday, April 24, 2009

SCRUB A DUB UPDATE

Hello Scrub a dub dubbers



I am at a loss for words at the amount of support that still continues to flood in for our Scrub a dub dub project.



The goodies and donations continue to pour in! I was so excited to get a picture of Wendy yesterday showing everything her and her team have collected, i nearly fainted! They have done an amazing job and i will be sure to thank you all formally when i get to see Wendy in the next few days. I have also recieved some photos and will be pasting them all up shortly



Our cut off date to drop off/collect 10 May 2009. We are planning to have our packing day on the 16th of May and anyone is welcome to join us - watch this space for details



We have well over 100 face cloths and toothpastes, we around 80 bars of soap, so if you are still looking for ideas we are still a little low on the other items such as ear buddies, tooth brushes, towels, body lotions, deodorant and combs. We were aiming for 100 bags but at this rate we might go over and be able to help even more children



We got very exciting news yesterday for Angel Ruan's family - not only have the made a wonderful donation, but they will be providing 100 children with a box full of sweets! How wonderful is that!



Thank you also to Deidre for your fantastic contribution, i can promise you its going to be put to the best use it can!

Thank you to Hellene for your very generous donation to, you have made childrens dreams come true!

Deqlans prayer army - you rock!
Dec United family - you rock!





I cant thank you all enough and i get even more excited each day as i hear from each of you and look at your wonderful pictures!



Have a fanastic day and wonderful long weekend again!
Love Samm

BE STILL AND KNOW THAT I AM GOD

Lots of Happy Birthdays

We have so many special people to wish for the next few days, so here we go:
Dear Uncle Bill,
Hope you had a very special Birthday yesterday and many many more! We trust that your health continues to improve and that you are feeling on top of the world! Look forward to coming to see you all soon! Thank you for being such a huge part of Deqlans prayer army
Dear Warren,
Wishing you a very happy birthday for today and many more! Enjoy the spring weather in the UK and tell everyone we say hi!
Dear Carolyn,
Wishing a very special lady a very special birthday! Hope your day is surrounded by your loved ones and your very special family! Thank you for all you do to create awareness to fighting neuroblastoma! Thank you for all your prayers and support for Deqlan and our family!
Dear Jeran,
Wishing you a fantastic 19th Birthday for tommorow ! Hope you enjoy your braai with everyone! May the year ahead turn all your dreams into a reality, look forward to seeing you soon soon!
Dear Connor,
Wishing you a very Happy 3rd Birthday and many many more! We hope you enjoy your Thomas party tommorow, cant wait to see all the pictures! Stay the hero you are and thank you for being such a huge support to us and for all your prayers and messages, hopefully we can meet one day - i think you and Deqlan would play so nicely together! ned forever and ever!
Dear Jelenka
Happy Happy Birthday dear friend for tommorow! We hope you have something extra special planned! I know that you have your gifts already, your two beautiful girls! Wishing you lots of love and happiness and thank you to you all for your continued love and support and prayers and friendship, we are blessed that our paths crossed with yours
Dear Graham
Wishing you a very Happy Birthday for Saturday and many many more! Hope the year ahead is great for you in every way!
God Bless and lots of love to you all
Mark Samm Deqlan Logan

Wednesday, April 22, 2009

EASTER CELEBRATIONS 2

Throwing NED stones into the lake with Nanna and Dada
Mama, Nanna and Deqlan enjoying the water - if Deqlan couldve jumped in he woudlve, check my hand holding his jersey, just in case..

Love this photo -yes, you took it my love ( we always argue who take the better pictures between Mark and I)
Morning Smiley Boy!
Kisses for Dad
Logan making wishes on dandelions
Love this photo of Logan

this one to!
Logan and Deqlan racing each other up the drive way! Logan runs so fast, we struggle to keep up - i cant keep up and Deqlan is not for behind! They are so quick!
Keaton and his keys - you leave them , he will find them !
Deqlan enjoying one of his Thomas books. There is a stunning little book shop in the midlands with the most stunning selection of Thomas books - Deqlan got about 6 from Dada and Grandpa and Nanna - he LOVES them -specific pages are definitely favorites and he will look through the entire book to find his favorite page - then leave it on that page - and come back again to make sure its still open on the page!
Yes, you took this one to my love....

How gorgeous is this photo?
Me and my beautiful boy enjoying the golf hole - the kids love running on the perfect grass, playing with the flag and putting the ball in the hole, i dont think there is any other golf course that would allow this hey!
Megs and Mom enjoying the gorgeous weather -we had the best weather ever this year - only had 1 very cold day

This is Deqlans favorite new Thomas book
Chilling with Dad
Logan and Meggie camping in the cool tent from Grandpa
Deqlan and Logan - very rare to get them both together, standing still in a photo!
The beautiful view from the front of the house - God is the most perfect painter - its truly so beautiful in this part of South Africa
We went to chocolate heaven for lunch on Easter Sunday - enough said! It was stunning -we got to dip the most amazing things into pure belgian white and brown chocolate - our favorite was the strawberries, cheese ( yes , you will be amazed how devine cheese and chocolate taste) strawberries, chillies, biltong - it was stunning - we went back several times...the white chocolate hearts with litchis in the middle were the definite winner!
Nanna enjoying her first glass of coldrink in 6 weeks - she gave this up for lent and anyone who knows my mom knows this was a big sacrifice - moms loves her cola! Well done Mom!
Yay! I found a mole hill to throw sand from!
Enjoying the horses with my boy on Easter Sunday - actually Deqlan was interested in the horses at all. but liked the wide open spaces to run, and of course, the sand!
Keaton on the Easter egg hunt
Logan waiting to go for a horse ride on Mischka - she visted Mischka ever day to feed her and rub her - Logan had an absolute ball!

Logans Easter project - she painted rocks and put a cross on them and then wrote little notes to everyone saying " Jesus is your rock" How sweet?

EASTER CELEBRATIONS 1 - MORE TO FOLLOW...

My first appletizer in 6 weeks, gave it up for lent, along with crisps!
The stunning cross my mom created especially for Easter morning!

we stayed in a different unit this year as the unit we normally stayed in is getting upgraded! we were very happy with our units which had interleading doors and jacuzzi baths- the biggest i have ever seen! It was also great to have 2 kitchens and two tv rooms so that Deqlans food could be prepared without worrying about other food contaminating it and he could watch his dvds to his hearts delight! Oh, i did i mention the magnificent view, horses just 10 steps from our back door, and the most beautiful view of the valley from our front porch, stunning, we love Saddle and Trout and the Midlands!

The magestic horses
Deqlan fell in love with Conrads Toyota 4 x 4. Every chance he would get he would run to the car and touch all the letters so carefully and lovingly and then run to each tyre, carefully touching the toyota badge on each tyre. Deqlan still does this with most cars, but Toyota is the definite favorite at the moment!

The stunning top Megs has made for Logs - Gods little disciple!
Deqlan got one to ! How stunning!
let the hunt begin!
let me go Dad!
Deqlans Easter goodies! I found sugar free candy, and filled the easter eggs with sugar free sweets, but Deqlan didnt really take to them...but he loves his book and underwater sea creatures! He LOVES dolphins and whales!
Happy Easter Morning Keaton and Meggie
The spectacular view on Easter Morning
Mama and Deqlan enjoying the Telly Tubbies ! Telly Tubbies are a firm favorite at the moment, Deqlan really enjoying them!
Wild Child Keaton!
I think the most stunning photo of Logan and Keaton. They are absolute best friends and love each other to bits
Keaton in his Thomas gown - Deqlan loved this gown and actually took it away to play with so Keaton only got it back in the morning!
What Deqlan does Keaton does, or tries to do!

Deqlan holding onto all the Thomas goodies Debbie sent from the UK. Thanks so so much guys for being so sweet and kind and thoughtful cant wait to see everything out ! The banner and balloons are going to look stunning!
Keaton playing in Nanna's water fountain! Dont get wet Keaton Meggie says!
Logan enjoying the easter festivities at Centurion Mall , before we went to the Midlands
Have you ever seen someone sleeping standing up straight - well, here is Mr Deqlan . He slept standing up for 20 minutes! Shame, so cute!

Deqlan enjoying his favorite pastime throwing sand and rocks and filtering through his fingers! It really enhightens his senses!
Keaton and Deqlan enjoying watching the dam at Centurion Mall
Here i am !