Wednesday, October 22, 2008

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

14 comments:

Loren Stow said...

Dearest Samm,
I can honestly say - Welcome to Holland... not as flashy as Italy, but still a wonderfully beautiful place! You know this already though!
I also don't have to tell you that your love for your child (and everyone else's love for him too) will never change! You have been surrounded by angels for a long time, and they will not leave you or Deqlan now!!
Your words are inspirational and I am excited to learn so much more about the world of the Autism Spectrum as you and Deqlan continue on your journey through this world!
Universes of Love & Hugs,
Loren

Mary Beth said...

What a beautiful post! You write with such love, passion, and determination ...it's amazing! Deqlan has truly been sent to this earth with a purpose. He is so strong, and so are his mom, dad, and everyone else who loves him. You all will continue to move mountains as you embark on the next leg of your journey.

Anonymous said...

Dearest amazing Samm,

You are the bravest mom I know Samm. You wonderful positive attitude and relentless belief in your precious Deqlan is truly inspirational!! Your unshakeable faith is also an example that we can learn from as you remind us regularly that with God all things are possible. You are so right that we will continue to be on this journey with your family and admire you for the way that you share your journey with Deqlan and teach other's so much along the way. He is a true gift and a blessing and your and Mark and your family's great love for him gives him such an advantage and opens up so much possibility for him living a fulfilling, happy and rewarding life.

Stay the amazing family you are and continue to be such a blessing to all Deqlan. God has a very special plan for your lives.

With much love and encouragement...
Karen and family.

Ferreira Family said...

Dearest Samm,

We will continue on this path new path with you guys and we will continue our prayser fro Deqlan.

Deqlan crept into my whole family's heart from the very beginning and he will forever be loved by us.

U and Mark are such brave parents and I admire the way you take a challenge in your stride, with sucjh positivity. If there is one thing i can learn from you, my friend, is to see the positive side of any obstacle in life. You are a great mommy and Mark is a great daddy to precious Deqlan.

Know that we are here every step of the way, walking right beside you guys.

Love and big big big hugs to Deqlan and all of you.

God Bless you all in abundance.

Love
Us

Caden Paul said...

I like your explanation best! Your strength and faith in God amazes me every day and I know that is what will guide you through every step of this journey. As I told Loren, we are privileged to be able to see Holland through your photos and will be here for you every step of the way. God chose you for a very special task, that means that only you are strong and brave enough to be the parents of such and incredible little fighter and soldier!

Lots and Lots of Love
Elriza, Wes & your buddy Caden

Anonymous said...

Dear Sam,Mark ,Deqlanand bev and family,
Trust in the lord with all your heart and lean not on your own understanding ,in all your ways acknowledge Him and he will make your paths staight.
praying for you aLL AT THIS DIFFICULT ,REMEMBER NOTHING IS IMPOSSIBLE WITH GOD.
You are in my thoughts and prayers .
Love Ruth xxx

bron said...

Dear Mark, Samm, Deqlan & fam
Matt and I had the pleasure of meeting your beautiful soldier over the weekend and he has krept even deeper into our hearts..... You all remain an inspiration to families all around the world and we have a lot to learn from you. Please know that we will continue to walk this road with you and we are behind you every step of the way!
God Bless
Take care
The Groblers

heidi james & hannah said...

Dear Mark, Samm and Deqlan,
You are an amazing family and this is just another very small stone in your path and if any family is ready for this it is you guys. You are the most amazing and inspirational people and I feel so honoured to be part of your journey.
Samm thank you for sharing your feelings and thoughts with us, no matter how down I feel your words always seem to bring me back to a happy place, your honesty and positive attitude is amazing, Mark and Deqlan are very blessed to have you as I am sure you are to have them!
All our love xxx

Amy Bucher, ^^Arden^^ and Grayson's mom said...

Samm, Mark, & Deqlan's army:

We're right here with you on this journey, on which the next part of the path has just been illuminated. Our prayers are always with with you, and we know you will continue your strength and determination to, above all else, surround Deqlan with love and faith.

God bless,
Amy, Rick, ^^Arden^^ & Grayson

Anonymous said...

To Samm, Mark and Deqlan

As a step-mom to an austic child, I know what you are going through. One thing I know is that autism does not change who your child is. He is and always will be your little boy. I also know lots of love, hugs and kisses and a positive attitude will go a long way in helping Deqlan. He will learn more from you than anyone else. Both of you are an inspiration and Deqlan is blessed to have you as parents. You are always in our thought and prayers. Give Deqlan big hugs and kisses from us.

Lots of love

Debbie, Jeff, Jared and Darryn

Carolyn Wing said...

I wantd to tell you that there is a site for Rhabdo- you can find it at acor. Always praying for you. Hugs and prayers. Carolyn Wing grandma to Laura Stage IV neuroblastoma carepages.com page name LauraVDB

JennBoBo said...

Dear Samm,

I'm speechless after reading your post. I was shocked to read about the assessment result for Deqlan and at the same time, I'm so proud of the courage you and your family have over the whole issue.

Samm, you truly are an inspiration to us all. Hang in there, we are all here to support you and walk with you through this journey. You guys are never alone! Deqlan is so lucky to have you guys as parents!

Love across the miles,
Jenn & Adrian
http://adrianau.blogspot.com/

Anonymous said...

hi Samm,

you keep amazing us, I have never met anyone who can remain so positive no matter what she is dealt, you truely are amazing and an inspiration to us all. For this very reason I know that God will hear our prayers and help Deqlan on his journey. Deqlan is blessed to have you and Mark as his parents, stay positive and remember we will always keep you all, especially Deqlan in our prayers. look forward to our next play date ; )

lots of love
jelenka

Debbie said...

Dear Samm

Youa rae an amazing mum and Deqlan is just as lucky to have you as parents as you are to have him. We are given our angels to nurture and love no matter what just like GOD loves us no matter what. The Bennimans love you and Deqlan and you are always in our prayers. in good times and bad!!!!

When i found out i was sad only because you have been through so much and deserve the easiest route through what we call life but sometimes in life the roads hardest traveled are the ones with the best rewards. and if you look at it what better reward than Deqlan.... Off the top of my head i can think of at least ten things that could have been worse and only 1 that could be better...that would be for him to say the words...I LOVE YOU MAMA...but i think a hug is better than words anyway!!!!! We all know he loves you very much.

We are here all the way....to learn with you....to rejioce at ever step of progress he makes and sometimes just to lift you up when you down......

Love the BENNIMANS