Happy Birthday Granny Rene

Dear Granny,

A very very happy birthday to you for today and many many more!

We hope you have a fantastic day and that it is filled with all the things you love and enjoy!

Stay the very special , warm,caring mom and granny you are!

We are sorry we are not able to spend the day celebrating with you, but we are there in spirit and thought

May the year ahead be full of love, joy, happiness, good health and laughter! May all your dreams become a reality!

Thank you for all you have done and continue to do for us - thank you for all the love and support and prayers you continue to give to Deqlan, for also being a very important part of his prayer army,thank you

A HUGE thank you for taking such good care of Logan- for taking her the to the dam every possible weekend you can, for still making her feel important and loved and for helping her where ever you can, whether it be school work or play! We really appreciate all the time, the effort, the care and the love you and Grandpa shower upon Logan.

We hope your speakers are on and that you are enjoying the very specially selected song for your special day, we know how much you love it and think of you every time we hear it!

have a wonderful day, May God continue to bless , guide and protect you, sending you all our love, hugs, kisses and wishes for a wonderful Birthday

Lots of love

Mark, Samm, Deqlan , Logan

Thank You Lord

Dear Lord,

We continue to thank You each day for the miracles You have performed in Deqlans life and in ours. It was exactly 1 year ago today, that i watched the last drop of vincristine, leave the container it was in, and travel down into Deqlans port - the last drop to wipe out any possible remaining nb cells. Today we celebrate, we are grateful beyond explanation and we thank You for Deqlan remaining NED and for all the love he brings to our lives.

Meggy also used to tell me that the 'magic water' was Your Holy spirit flowing into Deqlan and i imagined it coming into contact with this beast we called neuroblastoma, the same way the witch in the wizard of oz, was destroyed and anialated when she get wet -she screamed and disapeared into nothing.

I pray Dear Lord that Deqlans body remains free from cancer, illness and any harm forever and ever and ever. Please bless, protect, heal, keep clear every single blood cell, vein, artery, muscle, organ, bone, bone marrow and every hair on Deqlans head. Please let Deqlan remain NED forever and ever

We ask you Dear Lord Jesus to lead us to the cure , help our friends fighting nb and other cancers, please put your healing miraclous powers on them all.

We love , thank , worship and glorify you for 1 year where there has been no need for chemo, and we pray this continues always.

In your holy name
Amen

The ten things Every Child with Autism Wishes You Knew, by Ellen Notbohm

Here are 10 things every child with autism wishes you knew.

1. I am a child with autism. I am not "autistic." My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input, and I'm in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia. ... I can't sort it all out, I'm too nauseous.Because I am visually oriented, this may be my first sense to become overstimulated. The fluorescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in constant motion, too many items for me to be able to focus - and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try and regroup.

3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it's much easier for me to comply.

4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is, "This will be easy for you to do." When you say, "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me, "It's raining very hard." Idioms, puns, nuances, double entendres and sarcasm are lost on me.

5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something is wrong.There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits, because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me learn.A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations. Here's a great web site for learning more about visual schedules http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp7. Focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.

8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.

9. Try to identify what triggers my meltdowns. This is termed "the antecedent." Meltdowns, blowups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

10. If you are a family member, please love me unconditionally. Banish thoughts such as, "If he would just ..." and "Why can't she ... ?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you I'm worth it.

It all comes down to three words: Patience. Patience. Patience.Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?You are my foundation. Think through some of those societal rules, and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.They had autism too.

Thank you , thank you , thank you

Thank you Deqlans army from the bottom of our hearts for your amazing support, your prayers, your love - we are overwhelmed at the abundance of love we have had showered upon us by all of you !! Thank you for all your calls, emails, messages on the blog - we are so loved , Deqlan is so loved!

Today has been a jackpot day - we are being lead in the right directions, we are learning so much and speaking to amazing people - thank You Lord for leading us !We continue to be so positive and so motivated and excited to see the results of all the hard work we are going to put in. We know its going to be a long and some times hard road, but we are keeping our eyes on the end goal and keeping them focused on Gods guidance.

Tommorow, is a celebration and we are doing something very special to mark it! Tune in next week to check it out... the cause for celebration ....25 OCTOBER 2008, MARKS 1 YEAR SINCE DEQLANS LAST ROUND OF CHEMO! DEFINITE CAUSE FOR CELEBRATION!

Have a great weekend , please continue the prayers for our Deqlan and all other friends around the world, the angels and their families
God Bless, lots of love
Mark, Samm, Deqlan

BE STILL AND KNOW THAT I AM GOD

OUR GOAL -PULLING DEQLAN THROUGH THE WINDOW

Hello Deqlans Army,

Today , i am going to introduce you into a new part of Deqlans world - and hope and pray you will still continue to follow his journey and send your prayers to our healing Lord.

A lot of new terminology will be explained in the weeks and months and years to come - the first today - red flags, and no this are not the red flags of Lightning McQueen or some other magical car adventure.

ASD - AUTISM SPECTRUM DISORDER

It was confirmed yesterday at our assessment, that Deqlan is thought to be on the Autism Spectrum. A big shock to us? Not really. Originally, yes. The question of Autism arrived in my mind in the beginning of this year and thus the reason of taking him foR therapy - it was thought that the immense trauma Deqlan had gone through with his neuroblastoma battle, and the lack of interaction with peers his age could be causing the little red flags we were witnessing. Things like spinning of wheels on cars, instead of actually playing with the car, lining things up, delay in speech , fascination with water, nature , cars and dvds, lack of eye contact, not responding when we called Deqlans name , the few words he was saying disappeared, spinning and turning around and around when getting excited etc.

I started doing research, reading, watching anything i could get my hands on to learn more about this new world of Autism.

We had Deqlan assessed by a neurologist back in June we said she was concerned about the red flags, and they definitely indicated to the autism spectrum, but she wanted to give Deqlan a few more months to see what improvements could be made before she confirmed a diagnoses.

So as you all know we have had Deqlan at speech, occupational and music therapy and even tried our hand at as many safe play dates we could arrange. We started doing things a little differently and even took a chance on learning baby sign language to assist Deqlan in communicating with us. Lots of these things did help! And the positive news is the the neurologist does see a lot of improvement already! Improvement is hope, hope is getting Deqlan through the window and back into our world...it is going to happen, that i promise you my baby boy. I will continue reading , researching, running around the world if i have to to help you!

There is a huge amount of information i wish i could summarise and write all down, but i would use up all the space i have on our blogspot - so i will take you on a journey with us as we learn and discover and grow. The spectrum is so huge and vast , its like a rainbow, there is not 1 child that is the same. Not one 'cure' that works for every single child on the spectrum.

There are a lot of hope and recovery stories - they are amazing to say the least. most of these, Jenmny Mccarthys son Evan has made a full recovery, by specific therapies and a diet and the absolute determination and never give up attitude of his mom.

One thing that we would like to say off the bat , is that we will never ever label Deqlan as autistic. Its Person first, Deqlan is on the Autism Spectrum. Thats that.

You have all shared in Deqlans journey of fighting and winning against neuroblastoma and you still continue to follow and prayer for him. Thats why we want to tell all of you about this - so you can continue to pray to our miraculous God that heals and guides! We want you to be more tolerant and understanding when Deqlan doesnt answer your questions and doesnt look at you when you talk to him, or when he wants to pull you into a line , or why doesnt he point at things or wave back at you, or why does he love to watch fans spin round and around -you dont have to stop inviting us out, Deqlan has not changed! please dont look at our soldier any differently, he is the same Deqlan we all love - he is normal and perfect in every way! We just have to find the keys to open certain areas for Deqlan , in his way and understanding !

We cant imagine Deqlan any differently - the things that make him so unique or the things we adore about him. Autism is not an intelligence disorder- a lot of these children are far beyond there years - they just have problems getting things out and understanding the world socially. AGAIN , WE WILL NEVER LABEL HIM AND ASK YOU NOT TO EITHER. REMEMBER PERSON FIRST, AUTISM WILL NEVER HAVE DEQLAN!


THE TECHNICAL EXPLANATION:

AUTISM is a lifelong, extremely complex and often devastating disability, which appears to stem from a multi-factorial origin with a genetic base that interacts with environmental triggers, resulting in disordered brain development and biochemical function.


LAYMAN'S EXPLANATION:

International research has shown that worldwide, the prevalence of autism is on the increase and is now considered to affect approximately 1 per 158 children under the age of 6 years. It is found to occur in 4 times as many boys than girls and is the most frequently occurring of all childhood neurological disorders.

There are a vast number of ways that autism can present and as a result this disability is now more often referred to as “Autism Spectrum Disorder” (ASD). In broad terms, there are 3 main “types” of autism on the spectrum; “Kanner/Classic Autism” where in addition to the autism, there is also intellectual impairment. People affected by “Asperger Syndrome” generally display a good or above average intellectual ability, but still have most definite prevalent and debilitating autistic traits. 6% of the total population affected by autism have a form referred to as “Savant Autism”, where there is one almost “superhuman” ability, but the rest of their functioning is adversely affected by autism (The Rain Man).

Regardless of the manifestation of autism, ALL people on this spectrum, are affected in different degrees, by the “Triad of Impairments” that causes a disturbance in quality of development in the following areas:-

Language and Communication. 40% of people with “Kanner/Classic autism” never speak nor understand verbal communication. Even those across the full spectrum who do have speech, often still have severe problems understanding the normal process of reciprocal communication;

Social Interaction. People with autism, due to the altered chemistry and functioning within the brain, literally cannot fully understand other people’s emotions, reactions and the complexity of social relationships (Mindblind). This can result in people with autism reacting inappropriately by our “normal” standards, thus being shunned by society, which sadly can then result in these people becoming confused and isolated from those around them;

Imagination and Creative Play. A person with autism usually becomes trapped by rigid thought patterns and behaviours, a limited range of imaginative activities, as well as a poor understanding of day-to-day concepts, jargon and the abstract.

As yet, Autism is not curable, but with appropriate intervention it is possible to guide each individual towards their full potential in life.

DEQLANS PARENTS EXPLANATION:

WHAT A BLESSING IT IS TO BE DEQLANS PARENTS! DEQLAN IS THE SAME PERSON HE WAS YESTERDAY AND THE DAY BEFORE AND WILL ALWAYS BE THE MOST BEAUTIFUL, LOVING , CARING, GIVING, MIRACULOUS BEING WE WILL EVER KNOW. The look on your face Deqlan, when you see Mickey Mouse clubhouse singing Hot dog is priceless, the absolute thrill and enjoyment as we clap as you dance and pull us into your circle to dance with you is one of the best moments of my life. To watch you make beautiful leave pictures as we sit outside, enjoying the wind blowing the leaves in, is so peaceful and calming to the soul. To listen to the most beautiful sound in the world, your laughter as we eat your toes and then tickle your feet. To watch in fascination and awe at how clever you are , how you figure electronic equipment out amazes me, i am learning things from you my boy! To see you run to Dada or Me and give us the hugest , biggest hug we have ever had - they way you creep onto Dads lap to watch your favorite dvds - the excitement and exhilaration when you hear Dads car arriving knowing that you are going to see him any second now. I could go on and on and on - these are the things that make you unique - i love the movie happy feet and so do you - i can compare so many things - even the way you dance reminds me of mumble! It also shows you that everyone is unique and an be accepted - who wants to be the same anyway? The most wonderful thing chicken, is that Dad and I, and all the people that love you , can see exactly what you want to say in your eyes - we understand you! And this journey is just about showing you different ways to tell us what you want, so that when you go to school you can learn and i know you are actually going to be teaching others a thing or two! So dont let anyone ever tell you that this is a bad thing - its not - its a blessing - do you know how very special you are Deqlan? That God chose you to do two huge things - you have already beaten a beast called neuroblastoma, it stood no chance against you and our God and all the people in your prayer army. So this is a new chapter, and we know we are going to continue learning and we just continue asking God for the shoes we need to continue - we had green nikes on, so perhaps we need blue ones this time around, but dont worry, God will take car of the exact gear we need to get through this journey, i promise. We love you more then you can ever imagine, we are here with you every step of the way and God has the perfect plans for you! And you know what else, i know of so many people who have already said thay are going to walk every step of this journey with you - remember Nanna and Grandpa told us this on the 25th of May 2007, and you have seen for yourself, that they have been right next to you all the way - they are going to continue being there and i know so many other friends and family to - your prayer army!

So i have given quite a large chunk of this new world for you all to digest today and will be sharing all we learn and discover each day. I would like to share a video clip that i found on the TOGETHER ABOUT CURING AUTISM NOW- It is quite a heavy, emotional video - BUT - IT HAS A POSITIVE ENDING ,INSPIRING US TO NEVER GIVE UP, TO NEVER STOP SEARCHING, TO SUPPORT EACH OTHER - http://www.talkaboutcuringautism.org/video/hope-video.htm

Thank you for your prayers, your love, your support, we are grateful for them all
God Bless and all our love
Mark, Samm and the bravest boy i will ever know, Deqlan

FOR I KNOW THE PLANS I HAVE FOR YOU DECLARES THE LORD, PLANS TO PROSPER YOU AND NOT TO HARM YOU, PLANS TO GIVE YOU HOPE AND A FUTURE

JEREMIAH 29;11

Happy Birthday Dina and Evelyn!

Dear Evelyn,

Happy 1st Birthday Evelyn! We hope you have a magical day full of love and joy and laughter and Blessings! Stay the great sister you are to Will! We cant wait to see your 1st Birthday photos! You are to gorgeous and we continue to follow you growing up as eagerly as we follow Will's fight against NB!

Dear Dina,

A very happy Birthday to you to! Wow- to share a birthday with your daughter Evelyn, is something so very special ! We hope you get spoilt rotten today in blessings, that you can put your feet up and enjoy your beautiful kids Evelyn and Will! You are an inpsiration as a Mom and you deserve a bow today and every day! Have a lovely day!

God Bless and love to you both

Mark, Samm, Deqlan , Logan

Derek, Bev

Conrad, Megs and Keaton

Mark Poppins

Happy Birthday Gianna!

Me with Elriza and the gorgeous Caden on his Christening day

Loren and i! we missed you Kai!

The centre of attention!

Nix & Deqlan

This is MY Dadda!

Nats the pregnant fairy and Megs

Bron,the other pregnant fairy and Keaton

Us and our boys!

Mark Poppins!

It wouldnt be the same without water somewhere in our day!

All the space in the world to run!












Deqlans first official drawing!

We had a fabulous weekend!

the first excitment was Deqlan doing his first drawing! We have tried numerous times with paper and crayons but Deqlan was not to interested - Nanna happen to leave the crayons out and we watched with delight as Deqlan pick up a green crayon, yes green! He decided that paper was to boring and he started to make his mark on Nanna's tv cabinet - for those of you in South Africa, that have seen the Dulux ad - the one where picasso goes into a restaurant and draws on the wall? It reminded me so much of that, so perhaps we have a famous artist on our hands! Nanna has being going to so much effort introducing new games and activities each day for our inquisitive boy and we are hoping he will grab onto them as he enjoys them!

Friday night was wonderful to have Mark home early for a change and we enjoyed some pizza and a few rounds of ring a ring a rosey , Deqlan new favorite game. He even brings my hand towards Mark then holds both of our hands to ask for the game!

On Saturday morning we went to Irene farm to meet up with my friend Bronwin and her gorgeous son Matt. Bron moved to Cape Town around 12 years ago, we last saw her when she got married up here in Jan, so it was lovely to see her and Matt and introduce them to the soldier the have been supporting for so long! Matt even wears camo on Deqlans surgery and check up days!

Matt is the sweetest, gorgeous, 3 year old and he loves the springboks! He is very excited about his baby sister due next year, and he told me he was going to take very good care of her and even bath her!

Deqlan dragged me to water fountain so i only managed to catch up with Bron, Nats , Nix and Megs once Mark came to the rescue! He played the great role of Mark Poppins for the morning as he entertained Deqlan and Matt. Because Deqlan is not used to this, he would let go of Marks hand and not want to move until Mark let go of Matts hand to fetch Deqlan - do we sense a bit of jealously? We are actually glad at this emotion, its a very great sign, that Deqlan understands this! We all had a lovely morning together catching up with all our dear friends and i told Bron i wished we all stayed closer together - oh well, its an excuse for us to get down to Cape Town !

We came home and Deqlan had a lovely afternoon nap while Mamma read and caught up on some books she has been wanting to get into!

I then went to mass with great grandpa and Nanna on Saturday evening , where Nanna came down with a terrible migraine! Luckily she took a magic pill for the migraine and was able to look after Mr Keaton for the evening, as Meggie and Conrad went to Meggies 10 year school reunion. Now that makes we realise how quickly time is going - that my baby sister is attending her 10 year reunion already! Nanna reported that Mr Keaton was as good as gold and settled very nicely with her and grandpa!

Sunday morning , I attended Cadens Christening - unfortunately Mark and Deqlan didnt come with us Mr Deqlan decided to nap a bit later then normal. It was a really moving and beautiful ceremony where the minister used the story of Moses in his reed basket on the river nile as a comparison. For those of you who dont remember, Caden was born at just 6 months - so 3 months prem ,weighing over just 1 kilogram! With may prayers and God's mercy,he beat the odds and just turned 8 months today! As the minister said,we all have to put our children in God's hands, in their 'moses baskets' and just hand them over to God to look after. What a lovely way to picture what Deqlan has gone through and what a merciful God to continue performing miracles in Deqlan and our lives. I could take a few quick shots , then had to dash back home to get Dadda and Deqlan to get to Gianna's 2nd Birthday celebration!

Deqlan was still asleep, so i read and researched a little more and he eventually woke up at 1415..so off we went to the party, which was wonderful! We were greeted by the birthday girl herself, and her mommy Jelenka, and she was very proud to tell us she was now two! Deqlan dashed to the trampoline and their he spent most of the afternoon, enjoying running around on it, me bouncing himand tickling him on it - making pictures with leaves and just watching the world go by! Dad also got a work out getting Deqlan onto all the jungle gyms and it was wonderful to see Deqlan climbing so well on the apparatus, more then he has before! After the happy birthday's we all went to feed the bunnies and chickens, and Deqlan gave lots of laughter and smiles at the first time we had ever done this together!

Deqlan was then ecstatic to find a windmill that he could spin around and around and we spent a good few minutes enjoying this with him!

Our soldier then discovered where the cupcakes where and we made a good few 3 or 4 trips to go and get some more!

We had a lovely time, thanks so much Neil, Jelenka and Gianna for having us , we really treasure any chance we can get to get Deqlan out and about with kids and what an honor it was to celebrate Gianna's second Birthday with you all! Good luck for the scan tommorow Jelenka, as long as baby as healthy a little brother or sister would be wonderful!

For those of who, who havent gone to visit Malakai's site , please do go! Lorens entry today is to beautiful, and celebrates today being National Down Syndrome awareness day - what beautiful stories, we could all learn so much from them! See you Saturday Loren and give Kai big hugs from us!

Please say a little prayer for our soldier tommorow as we go for our follow up evaluation with the paediatric neurologist - we hope to show her how Deqlans has improved in many areas and hope to put a perfect plan into place for him for the next few months to help him reach his full potential! Shall let you know how it goes!

Please continue the prayers always for Deqlan and all our friends around the world - please pray for a cure for childhood cancer and support any way you can, donations, prayers, support for our friends and families -thank you all and God Bless !

God Bless and lots of love

Mark, Samm, Deqlan

BE STILL AND KNOW THAT I AM GOD! SACRED HEART OF JESUS WE PLACE OUR TRUST IN THEE, ALL FOR THEE OH LORD, OH MY JESUS ALL FOR THEE