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!

3 comments:

Lisa said...

Samm,

Wow your story is amazing! And little Deglan is adorable!!! I can't imagine having to go through a scare like cancer, you certainly are a strong mom :) Its amazing how when you change a few things like diet and give some supplements how much change you see in them! Please keep in touch with me as I love to be able to connect to other parents.I will follow your blog to keep up with you and Deglan, and I'll be prayikng you see tons of progress for your cute little boy!

Blessings
Lisa

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