For me the answer is simple. I will do whatever it takes!!
For a while now I have been feeling unsatisfied with the progress Stella has been making. Don't get me wrong, I have been loving and appreciating every milestone Stella has been working so hard to achieve.
But I have been feeling like we are missing something.
Since Stella turned two years old, I saw very little progression with speech. I kept thinking "there must be something more we can do to help her to talk".
Speech is huge in life.
Stella knows how to sign, she is able to be heard by using her voice (as in yelling or grunting when she wants something or is in need of help).
But that will only get her so far. She is going to be starting preschool, she is going to be around typical kids more and more and knowing that she would not be able to communicate with them at their level was just causing me such sadness.
"She'll talk when she is ready" I kept being told
I wasn't convinced.
"There HAS to be MORE we can do for her!!!" I kept thinking.
Then one day I was checking out my Facebook news feed and came across this article that a friend of mine posted.
Life, Liberty and the Pursuit of Happiness for Kids with Down Syndrome
This article, made me stop.......
This article make me think.....
This article blew my mind......
This article was a GAME CHANGER!!
I always knew that Stella's brain function was different, but it never occurred to me that her brain was disorganised, that her brain was injured.
So, if Stella's brain is injured, does this mean it can be fixed?
Based on the beliefs of the Institutes for the Achievement of Human Potential (IAHP), the answer is YES!
Now this may seem "out there" and extremely "unconventional", but after reading the IAHP's website iahp.org, after reading their ideas and beliefs on children who have Down Syndrome, it just all made so much sense to me.
"Children with Trisomy 21, labeled as having Down syndrome, have a pattern of malformations that are pathogenetically related. It was believed that these genetic problems were the complete explanation as to why these children could not function as well as other children. As a result, it has been assumed that they could not be treated or helped.
This is not the case.
The Institutes does not treat the genetic disorder. However, these children are brain-injured as a result of their genetic problems. Those injuries may be mild, moderate, severe, or profound, just as they are in other brain-injured children.
Down syndrome is a label rather than a diagnosis. A proper diagnosis describes where the problem exists, the degree of the problem, and the extent of the problem. It is necessary to treat the brain, where the problem actually exists to be successful.
The Institutes teaches parents how they can help their child by focusing on the normal development of the brain, rather than on therapies that may be directed only at the symptoms." (an excerpt from iahp.org/downsyndrome)
I read this and re-read this, and every time, it made sense!
"For too long brain growth was thought to be a static and irrevocable fact. Instead brain growth and development are a dynamic and ever-changing process.
This is a process that can be stopped, as it is in profound brain injury. This is a process that can be slowed, as it is in moderate brain injury but most significantly this is a process that can be speeded.
All that we do to speed the process is to provide visual, auditory and tactile stimulation with increased frequency, intensity and duration in recognition of the orderly way in which the human brain grows. We then arrange for the child to have the maximum opportunity in an ideal environment to use and develop the motor pathways.
For more than a half a century, the heart of The Institutes program has been based upon the fact that the brain grows by use.Scientists now recognize the plasticity of the human brain and new research in neuroplasticity confirms that the brain is incredibly capable of recovery and rehabilitation. The old notion that once the brain is injured there is no means of recovery has been discarded."https://iahp.org/about
I showed Mickey the IAHP's website, I had him read the articles and to him it all made sense as well.
I called my friend who posted the article on her Facebook profile. Her daughter has Down Syndrome and she has been on a ND (neurodevelopment) program with her since she was 8 months old. I watched a few videos of their daughter and was amazed with what I saw. It was obvious that they were doing something more then the conventional methods to help their daughter.
I emailed another facebook friend who did the IAHP program with her son from birth to 6 years. She had nothing but positive things to say about her experience. The program she had him on was intense, but worth it in the end.
I found two blogs from mother's whos children have Down Syndrome and who are using a neurodevelopment program. The Down Syndrome Action Plan, and Down Syndrome Day to Day
These blogs are amazing sources of information and inspiration. Both boys are changing what it means to have Down Syndrome! What they are achieving and what they are able to do fantastic to see.
I then ordered and read this book
Naturally Better Kids - Down Syndrome, It Doesn't Have to Be That Way
Mickey and I want Stella to reach her fullest potential. I 100% believe.....WE 100% believe that with this new information, with this new knowledge that we have just learnt, that we will be able to help Stella.
We will be able to help her more then we ever have before.
In December Mickey and I will be travelling to Philadelphia to take a course at The IAHP.
From this course we will learn all about the brain, brain injury, how function determines structure, the importance of physical activity, the importance of teaching children to read, how to create a nutrition program, and how to evaluate OUR child and develop a program for her.
From this information, Mickey and I will develop a program specifically and only for Stella. You see The IAHP believes that the parents are the key, and that we know our child better then anyone else. Therefore, who better to put together a program and do the program daily, then the parents??
This road we are about to embark on is not for the faint of heart. The program will be intense.
But Stella is worth it.
This is for her, for her future, for the whole family's future.
|I will not underestimate you anymore my sweet Stella.|