I'm with and Priscilla K

[Guest guest]

" I cant change society and neither can I say for certain I will out live Sam.

This means the unconditional love of my perfect son could die with me and he

will be dependent on others who may have a very different view of him and Downs

and probably have their own agendas. I just want to help him have as much say in

what happens to him as possible. "

We speak only for what is right for our family, our child. We have Freddie on

minor protocol that we researched ourselves, discussed with our son's

pediatrician, endocrinologist, neurologist, behavioral specialist, psychologist

and nutritionist. Not once have we heard these medically trained professionals

(in a major respected University Hospital) refer to Freddie as a guinea pig. You

say potato I say " po-ta-tow " . We could battle the guinea pig label out for ages

.............

We are blessed to have all these wonderful " advisors " in our lives. Anything we

gain from our research/experiences will always be shared here and anywhere

people seek out anecdotal experiences. We have seen magical changes in Freddie.

The kinds of changes that have allowed him to successfully complete a fully

inclusive kindergarten year and to move onto an inclusive 1st grade. I

wouldn’t have been able to say this about preschool before we started our

protocol.

What drives us to use these protocols/supplements? Quality of life is our

answer. By all accounts Freddie lives a wonderful and happy (spoiled) life.

We continue to seek cognitive (and all that it encompasses) and motor

improvements for our son because we do not live under the false impression that

someone will swoop down and take/love our mentally disabled child in after I, my

husband, our family support, or financial system is gone.

Everyday we have reminders that Freddie and his condition / disease /

chromosomal enhancement, whatever you want to label it, is still not completely

accepted in this world. Everyday we have some reminder that he is different from

others. Reminders that he won’t be accepted and belong everywhere with

everyone. As long as we are alive our son will continue to live his very

comfortable and quality filled life. Enhancing his cognitive level isn’t going

to turn him into completely new and unrecognizable child but it will perhaps

enable him to fit into this world just a little more comfortably.

We have first hand knowledge of what happens to the disabled after their loving

family support system has disappeared. Whether through neglect or death, the sad

truth of the matter is, on a daily basis the disabled are dumped into a broken

health care system. A system that I seriously doubt will improve in my or my

childs life time. This " health care system " that is in place to help our/your

child is greatly under funded, poorly mismanaged and on more than one occasion

has been found to be abusive (physically, mentally and sexually). It pains my

heart to think that after a life time of supporting our child in a comfortable

environment, we will someday suddenly disappear from his life with little or no

explanation and little or no understanding on his part. Of course we will

prepare him as best we can for these eventual losses. If we can somehow lessen

his pain and what I am sure will lead to feelings of abandonment, I am all about

it.

We feel we have a responsibility to both our child and society to insure our

child is equipped with the best possible tools to enable him to be as

independent as possible. Who doesn’t do that for their typical child? I pray

and hope for the best but I am cognizant enough to know that prayer and MY love

and total acceptance of my child " as God intended him " is not enough. My husband

and I must be vigilant in our duties as parents to ensure our son is someday

ready to go out into the world without us.

3 years ago I attended a conference as Stanford. All the players we talk about

here were in attendance. They gave eloquent and hopeful speeches. Clearly they

are all dedicated to this work on behalf of all OUR children. I respect, greatly

appreciate and pray for them all. I remember a question from a parent about

protocols for cognitive improvements. I also remember distinctly Dr Mobley's

response. He said he believed there is already a product on the market that will

address the cognitive questions. When pressed for an answer as to what that

product was, he made it clear that it would be unethical to put that information

out without first completing proper studies/research/trials. It was a

responsible and appropriate response. That was three years ago. We are still

waiting for that answer. We have no intention of losing anytime in our son's

precious life wondering could we be doing more and sooner. We intend to continue

on researching, listening and

gathering the information we think is pertinent to our son's cognitive and

motor improvements. We will continue to work with our son's medical " advisors " .

We will continue to work hard everyday to support spiritually and financially

the works of all those at Stanford, Changing Minds, DSTRF, s Hopkins and

anyone else in this great race for answers.

I have one more comment about studies/research/trials. We must all remember that

any research, studies, or protocols that help OUR children are also going to

help others with other disabilities. Remember we are talking about neurogenisis,

not just " fixing " DS. Should DS be sadly “eliminated†through whatever

means, the studies on hippocampal neurogenisis will not go away with DS. Those

with DS do not " own " the MR label. Just like studies revolving around

Alzheimer’s is a tremendous help for our kids, any studies about DS will help

others.