I want to talk for a minute about the difference between advocating for inclusion and treatment for our kids. What I have found in the Down Syndrome community is that sometimes there is, outside of major things would either require surgery or prescriptive intervention on an emergency basis, there is this idea that there is nothing wrong with our kids. So I want to talk about this and dig into it and understand given what we talked about yesterday given the extra genetic material and what it does, and making sure our minds are right before we start digging into more of that science part of what’s actually going on with our kids.
We have the responsibility to advocate for our children. That means giving them the best chance at the best education possible; that means helping to educate others that just because our children may look a little bit different or sound a little bit different, maybe they’re a little bit shorter a little bit heavier or whatever, doesn’t mean that they’re not just people. That’s part of the advocacy group.
A lot of what I see in the Down Syndrome community is a big push to get better inclusion for our children, and I love that! And I’m still seeing, at least where I live in Michigan, that it’s a real challenge to get our kids included in general education. It’s a challenge to get our kids included where what is actually normal behavior is now looked at and said oh well this is because they have Down Syndrome so we have to do something special or we can’t tolerate it because they have a special need, when everybody else it’s acceptable for.
So I want to talk about the difference between advocating for inclusion and treatment.
What Are The Medical Issues Our Kids Face?
These are all things we need to be concerned about because they are common in kids with this extra chromosome, so we watch for them. When we see them, we go and get them treated. If our child is born with a heart defect, what happens? They have surgery, at least once, to correct the issue. All of our kids, at least everyone I’ve talked to, had an echocardiogram within hours or a day or two of being born because we want to be sure that structurally things are solid and good. If they’re not, we treat it.
When we start getting outside of that and we start looking at things are common but not life threatening for people with Down Syndrome, those are things that don’t tend to get treated, or at least not in the same way. Thyroid tends to get treated, that can be a life threatening things.
But things like short stature, early onset of Alzheimer’s, regression in speech and cognitive function, cognitive delays. All of these things are things that we look at and say that’s just common for Down Syndrome. It’s accepted that way and nobody asks the question why. We talked about this a bit yesterday. Why is this common, why is this happening in our children?
So some of the research being done right now by exceptionally smart people is seeking answers to some of those questions as to why are some of these things happening?Just because we’re researching those things, and just because some methods of treatment are surfacing, there are a couple of things I want to make absolutely clear.
There is no treatment for Down Syndrome. There is no way to correct the extra genetic material. That is going to be with them for life. That’s like saying there’s a treatment for my brown eyes, that’s part of my genetic makeup. And currently there is no technology or treatments known to correct this.
And I would argue that, and I think this is where a lot of arguments within our community are, God created us a certain way, and so with that genetic material in place for that person, if we start messing with that, and trying to correct that genetic material, we may open up a whole can of worms that we really don’t want to open up. So part of the learning process is asking what can we do to help this person function in the best way possible but still accept them for who they are.
Just because they have thyroid issues doesn’t mean they aren’t an incredible person. Just because someone is a little short doesn’t mean they’re not an incredible person. Just because they may not sound like others when they speak because of a tongue tie or the hypotonia affecting the tongue doesn’t mean that they’re not an incredible and smart person.
So we have to, I think as parents, separate out the advocacy for inclusion, and the seeking to understand and treat everything we can to help our kids function the best that they possibly could. That’s why I am doing these videos and why I am learning more about science and biology and biochemistry than I ever thought I would want to.
As we go through this if you have no interest in understanding what may be going on and what may be able to be done for it, that’s totally fine, this isn’t for you, and that’s absolutely fine. Not everybody is in a spot where they want to go through this and want these answers, and that is for each of us to decide.
If you’re in a spot where you’re going, I’m advocating for my kid, and I want the answers as to why, and I want to know what else can I do, keep listening in to these. Some of those answers will be here, and I’m going to point you to some places that you can get even deeper answers than what I have. My hope is to give you just enough to say yes, this is worth your time investigating, and then point you to where else you can learn and learn deeper, and understand some of what you can do.
Know this, this is probably the most incredible time in history for our children, in terms of resources available for them, in terms of society’s acceptance for them. We have seen people with Down Syndrome going to college and graduating, holding down any number of a vast range of jobs, not just menial task jobs. We have seen people with Down Syndrome performing at Olympic levels. We have seen so many amazing things, and part of that is because of where society has come in terms of acceptance and inclusion, even thought we still struggle in a lot areas.
The other part of why we’re starting to see some of these things is because of the research and knowledge that is being gained on how do we treat some of these things that aren’t necessarily life threatening, but that do affect our kids, and how do we help correct that. So it is truly an exciting time and I’m excited to continue sharing this with you.
Advocate strongly for your child by learning as much as you can because the people you work with will never know as much as you do.