Tuesday, 11 September 2012
Recently I was sent an online article from BioResearch Online entitled “Autism and Cord Blood Stem Cells: FDA Gives Green Light For Ground Breaking Clinical Trial.”
I know I may seem pretty darn smart (I tell myself that often) and I know I look super smart BUT I am at a complete loss when it comes to cord blood, stem cells, bioresearch and all that! Of course I’ve heard of the terms, but after reading this article it certainly gave me a sense of hope.
Could my child really ever be “cured” of autism? Is it right for me to have that hope? What does this all mean?
A couple of things came to mind…I immediately wanted to know how I could sign up for the clinical trial. What parent wouldn’t be interested in that? I also started thinking…”what if we were part of the trial and were the placebo element of the trial?” Would that suck or what?
If you’re a parent of a child on the autism spectrum you probably know where I’m coming from. We’ll do just about anything to help our son, William, who is now 6-years-old. Just imagine him talking to me. Just imagine him not stemming or making that awful squealing noise CONSTANTLY during the day. Just imagine him leading a “typical” lifestyle.
One of the key chapters in our book, Look At My Eyes that my wife and I wrote in 2011 (now available in Spanish as well Miarme los Ojos) discusses how important it is for the family to be unified in their decision for treatment, therapy and expenses when it comes to their child with autism.
I’ve seen (and experienced first hand) too many couples and families who have had major arguments and divisions when it comes to these issues. No father wants to deny his child services…but not many fathers can actually afford to do every therapy, treatment or service…at least not this father.
When William was younger my wife, Melanie, would drive all over the DFW Metroplex (if you don’t know…it’s very big) to go to this doctor and that therapy and this activity…hoping to find a solution or therapy.
It was a HUGE strain on her, our son, the family checkbook and our relationship. THE BIGGEST KEY to making the marriage survive when dealing with special needs children is to BE ON THE SAME PAGE!
I’m sure there are risks involved with this cord blood stem cell research…has to be, there are risks with just about everything. I don’t know if my wife would be as excited as I was when I read the article. She might be more hesitant when it comes to the health of William and potential risks.
There are many “cures” out there…many that are medical or have medical claims but PLEASE BE CAUTIOUS…this is your child we’re talking about here. A “cure” does not exist…so be careful not to put all your hope and trust in a claim that could potentially be harmful to your child.
Finally I thought, “do I want my son ‘cured’ from autism!?” Is that twisted or what? Yeah I want him cured. Yeah I want him to be typical. Yeah I want him to be happy.
But what if he IS happy? I know he gets frustrated with lack of ability to communicate at times. I know we are frustrated when we are dealing with his behaviors and such. But does that mean he’s not happy?
Is it my happiness that I’m seeking or his?
Would William BE William if he took a magic pill or cord blood and didn’t have autism?
Have you considered that? I don’t think I had until I read this article. Almost like in The Matrix when Neo has a choice…take one pill and stay the same…take the other and your life is totally different and you can’t go back.
It’s not that easy of a decision is it? On one hand you don’t want to deal with autism and all that stuff…but on the other hand, if your child is “cured” all of a sudden, are they the same child? Different? Better? Worse?
In conclusion…bring on the trial. The way our FDA and government work it’ll be 2040 before they approve or make a recommendation. At least it’s a start–so who knows, maybe they’ll find a cure that will help children and change our society forever.
Meanwhile…take delight in your child. Your child is YOURS…a gift, a blessing–no matter how much the stem or squeal or wipe poop on the floors. Focus on the joys your child brings you when they are able to communicate….when they dolook at your eyes
Be a team with your partner…be on the same page with finances, treatment and therapy. Cord blood stem cell or not…love your child for who he/she is…yours!
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