Thursday, June 18, 2009

Happy Happy Happy Happy Talk

How is Deqlan doing? Wonderful, marvelous, fantastic, incredible would be the best answers i could give you all!

The most beautiful music is heard each time Deqlan opens his beautiful little mouth to proudly practise the words he can say , or try new ones each day!

New words for the week , so far: sleep, steam ( Deqlan loves watching the steam rise from hot water) , "dee" for Birdy, " G" for frog, bye and bye bye ( now saying it at appropriate times) , Bee and wait for it, drum roll please...........................................


Our little boy, who has only started talking again in the last few weeks, at the tender age of 2 years and 9 months is saying the alphabet!

Nanna and I were watching Baby Genius, under water sea adventures on Monday afternoon, when all of a sudden, we heard Deqlan say " G" - we had a look at the screen and realised it was at the bit were the alphabet letters come up , out of the treasure box 1 by 1. "again, again' Deqlan said in his own little words. So , we watched it again and there Deqlan said G in exactly the right place. We both laughed with absolute delight and clapped our hands, which spurred Deqlan on even more. The next time we played it, even more letters came out of Deqlans mouth E , A, B, C...Mark was astounded to hear the new discovery when we got home from Mark.

This has becomes Deqlans new favorite thing to do - he requests to watch the alphabet over and over by getting us to play this dvd, then he nudges us to get it just to the right place and then he says 'E' This is his way of telling us he wants to say the alphabet! Well , Deqlans prayer army, let me tell you which letters he can say now

A, B, C, D, E, G,I,L,M,N,O,P,Q,R,T,U,W,Y,Z!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We are beyond proud and delighted and so is Deqlan, when he has finshed saying the alphabet, he proudly claps his hands together if we are not quick enough to start the clapping first. The letters he cant say yet, he makes a noise for them, so we know he acknowledges there is something in between.

It is the most beautiful thing and i will try very hard to record it and get it posted onto our blog!

How amazing is Our God???? Who can now turn around and tell me the gluten casein sugar year soya free diet doesnt work, i shouldnt even give it a go??????????????

Another beautiful development is asking Deqlan how does a lion go? "aaaaaaaaa" and he puts a bit of strain on the sound to, he really does sound like a lion! The other favorite is how does a cow go? 'mmmmmmmmmmm'' How precious!

When i say Sleep, Deqlan tries to lay my head down, no matter where we are. When he says the Ponty Pines in their beds, he says Sleep!

Thank you God every day for the progress that Deqlan is making, the light that has come on in his eyes, the understanding that is starting to happen , all this making things less frustrating for our Deqlan to be understood! We look so forward to every day in anticipation for what Deqlan will do or say or discover today.

Deqlan wasnt to well on Tuesday night, he had a very restless night and kept waking up , pulling on his ear and crying, and in the morning, pulling on his throat crying, so off we went to the doctor, as i was experiencing the same niggles - luckily nothing to serious, so we have Deqlan on some cortisone to relieve some pressure off his ear and the anti biotic script on standby for us both - but hoping we can do without it!

I also wanted to share a book with you , one of the best books i have ever read, Autism related or not - A FRIEND LIKE HENRY - what a stunning book and i highly recommend you all get to read it if you have the chance. Without giving to much away, Henry, the beautiful labrador, is the only being that is able to get into Dale's world . Dale was severely affected by Autism - by Henry changed a lot of that, and brought back Dale to his family and the world - what a stunning story, i have learnt so much from it and wish we could all have a Henry to help our kids, what amazing healing properties lye within this animals - id love to take Deqlan to swim with the dolphins to one day, i know he would love that, as he still lovingly smiles and watches Free Willy and carries our dolphin teddies around with him.

We are thrilled to see how much is being done and how much awareness is being created in South Africa with regards to Autism - we can only hope the same will happen for childhood cancer. if you can, please go and get a copy of the latest You Pulse magazine, it has stunning articles and information on Autism and what to look out for , with real life stories and experiences - i think i should actually share some of the information in the magazine in the days to come to continue creating awareness and understanding.

We have a new and very exciting development to announce in our plans to get Deqlan to reach his full potential and reach for the stars and beyond. We met a lovely lovey called Liezl, who is going to help us develop a home programme specially for Deqlan. She is going to train Nanna and I, she is going to help us create a schedule for Deqlans days, worked out around the setting and activities at Little Leaps, so he is ready to go to school in Jan , and the list goes on - here is a little bit about Liezl and what she does;


Why another ‘autism organisation’?
We live in a beautiful South Africa. Unfortunately, like the rest of the world, the statistics for children diagnosed with autism spectrum disorders (ASD) are on the increase. South Africa faces an enormous challenge to allocate its limited resources. There is a big discrepancy between wealthy and poor and the gap is still growing. Services provided are often limited, fragmented and very expensive.

Despite their long-standing tradition of independent operation, all service systems for young children and their families are currently challenged to provide for greater integration and to define best practices in order to guide the allocation of our finite public resources. The challenge is how to capitalise on current knowledge and mobilize our collective resources to ensure better health and developmental outcomes.

When both the child and parent reap benefits, program effectiveness is extended to the community as a whole, in economic terms as well as in quality of life. Therefore, as an organisation, we want to provide a service that is build on accountability, appropriacy and sustainability.

Our dream!
Our dream is for every child who faces possible developmental delays and their family to receive individualised intervention that will allow them to reach their full potential. We want to see a society where each person will have the opportunity to grow up and become a participating member. We want both the child and the family to thrive.

How are we going to achieve this?
We want to catalise change by empowering parents to help their child. We are acknowledging parents as the cornerstone of intervention for their child. By using a transdisciplinary approach towards intervention, we aim to combat the challenge regarding limited resources and unsustainable intervention strategies. We want to establish a working relationship between parents and professionals that will result in better service delivery for the children who needs intervention.

This is not an easy task, but we belief that we can make a difference, starting with helping one family at a time.

Who are we?
Phil de Wet, co-founder of Trees of Hope Foundation, is a qualified high school educator with a keen interest in physiology and biology. She is the mother of Philippa. A lovely girl diagnosed with ASD. Phil has extensive experience in dealing with autism in South Africa and wants to help parents who face the same delights and challenges, by
being the person she needed along the road. Phil specialises in helping
parents using a biological intervention approach to treat autism.

Liezl Schlebusch, co-founder of Trees of Hope Foundation, is an Early Childhood Interventionist. She completed a B.Sc Degree at the University of Stellenbosch. Her majors were Physiology and Human Movement Studies focussing on people with special needs. She completed a B.Compt (Accounting) Degree through UNISA. She then did an Honours Degree in Augmentative and Alternative Communication for people with little or no functional speech. Currently she is doing her Masters Degree in Early Childhood Intervention at the University of Pretoria. Since 2000, she had worked continuously with children with developmental delays. Work experience includes working in the UK, Cape Town and Pretoria with different children on the ASD spectrum. Liezl focuses on an early intervention home program to help children and their families.

Early Childhood Intervention (ECI) Home program
Globally, ECI is moving towards service provision that is based on a transdisciplinary approach. Current interventions often happen in an isolated, fragmented way. Parents go through great lengths to organise intervention therapies for their child, often to end up waiting outside the therapy room, without learning how to help their child at home.

By using a transdisciplinary approach towards intervention, our aim is to establish effective collaboration between parents and the diverse service systems, in the end helping the child with intervention that is appropriate, affordable and sustainable.

What is Early Childhood Intervention (ECI)?
The goals of early childhood intervention:
° To promote child health and well-being
° Enhance emerging competencies
° Minimise developmental delays
° Remediate existing or emerging disabilities
° Prevent functional deterioration
° Promote adaptive parenting and overall family functioning

Goals are accomplished by providing individualised developmental, educational, and therapeutic services for children in conjunction with mutually planned support for their families. The ideal is to provide a comprehensive, broad-based program with a strong parental involvement component. The outcome of service provision is measured by developmental progress.

By providing an intervention service, we aim to help the learner to meet social expectations, to increase his/her social competence, to foster a healthy self-concept, to be able to use language, to have the capacity to communicate and interact positively with peers and adults and to prepare for formal schooling. Thus, providing an integrated holistic intervention.

The Trees of Hope – ECI Home Program
The home program is designed to empower parents to help their child. It consists of different stages that are dynamic and interchangeable, depending on the wants and the needs of the family.

First stage: Home visit and team brainstorm
A home visit where we discuss different aspects of the family life and specific needs regarding the child. Parents, myself and other interested parties brainstorm
together to determine immediate, medium- and long-term intervention goals.
The outcomes:
° Established the family’s priorities, structure, values and resources.
° Intervention aims divided into timeframes.
° Lifestyle planning.

Second stage: Theoretical issues and required readings (handout and teaching)
The information is given in a handout format. Theoretical information regarding a
home program is divided into relevant topics. This knowledge will allow the parent
to see the “big picture” and to assist in critical thinking.

The outcomes:
° Sound knowledge.
° See the big picture.
° Critical thinking.

Third stage: Play-based assessment of learner with parent involvement
This involves a functional play-based assessment with the child. The parent is involved in the process.
The outcomes:
° Establish developmental level of child, strengths, interests and difficulties.
° Practical experience regarding theoretical issues.
° Role release on how to work with your child.
° Program designing and resource allocation.

Forth stage: Designing an individual home program
An individualised intervention program is designed taken all the family dynamics into account.
The outcomes:
° Individual needs addressed.
° Family specific.
° Definite goals determined.

Fith stage: Implementation of home program and training of key worker
Implementing the program by providing training and helping with the practical set-up.
The outcomes:
° Confident and comfortable with doing activities.
° Apparatus and materials needed are organised.
° Sustainable intervention.
° Functional.

Sixth stage: Feedback, follow-up and reassessment
This stage allows the parent, key worker and program manager to have continuous communication and to monitor intervention aims. Adjustments can then be made.
The outcomes:
° Adjustments to avoid frustration.
° Support network, helpline for all parties involved.
° Ensure realistic expectations.

So now, all of you are in the loop and we ask for lots of prayers and positive thoughts for Deqlan and for us! Our training and assesments will be done the week of 29 June- 4 July and we cant wait to start, shall keep you all posted! Please pray this is exactly what we need to get Deqlan to soar and achieve all his dreams!

We hope you all have a great weekend, we have a busy one! Fathers Day Sunday and Marks Birthday on Monday!

My Gran will also be relased from hospital soon and I am so happy to say is not going back to the frail care home, my wonderful sister and mom have started making arrangements to get a night and day nurse to help my Grandad take care of her at home! How wonderful, thank You Lord for another miracle of healing in my Gran!

God Bless, lots of love and please please always continue the prayers for Deqlan to remain NED FOREVER AND EVER AND EVER and please pray for all his friends around the world, the angels and their families and for the cure for cancer

Mark Samm Deqlan Logan


Anonymous said...

My friend, I am soooo pleased to hear that Deqlan is doing so well. What a BIG boy to say his alphabet, and SO CLEVER!!!! I can only IMAGINE how proud you guys must be of him. He has walked an incredible journey, and you guys continue to blow me away with you dedication, charisma, positive attitudes and FAITH!!!!!! Love you and miss you more than anything in the world.
Sam xxxxx

Loren Stow said...

Well Sam, I think my eyes are watering...
From one mom to another mom, I can only begin to imagine the beauty, the magic, the 'take a deep breath' moment, every single time you hear Deqlan talk.
What a beautiful thing. Simply Beautiful. Stunning. Wow.
I am so very proud of Deqlan!

Lacey said...

Hi there, I'm sure Megan has told you I'm making a blankie for Deqlan. I may have to settle for any train material, because Thomas is eluding me. Its very popular here and hard to find. I'm also sending some of my boys Thomas toys. We no longer play with Thomas, but it was huge for three boys so we have lots of stuff.