This page is for posts I want to separate out from kiddo updates. So, this is where I get to express my personal opinion on things - DS/T21 related or not. I need a place to rant, too. ;-)
I've seen so many articles of "Top 10 things you need to know about Special Needs Moms" and the like. And one of "why I don't want to bring my (typical) child to your house" - that one was pretty funny, and hit the nail on the head. So here's my thoughts for the day - now, keep in mind this isn't aimed at anyone in my life in particular - just some fairly widespread generalizations from the special needs community.
6 Reasons why I don't want to bring my child with special needs to your house.
#1 My child has severe food sensitivities.
Kids don't always understand (because of age, cognitive awareness, etc.) what they can and cannot eat. Think about young toddlers who eat any object they find on the floor that could send them to the ER - only in the special needs community, that food crumb on your floor could send our kids to the ER. Or maybe there's a buffet laid out which is a cross contamination nightmare. We sometimes end up bringing our own food just to be on the safe side, which comes with a side of guilt because you might think we think your food isn't good enough. "Just this once" or "he'll be fine, look he likes it!" doesn't cut it. Do not underestimate the power a single crumb of a "no" food can have on our kids. Our family is the one paying the price, not you.
#2 My child communicates differently which can include hitting, kicking, and screeching.
We don't know what's in your house that may set our child off. Maybe it's the lighting. Maybe it's the texture of your carpet. Maybe there's too many people. Maybe it's something more "normal" like because he wanted an apple and you only had pears. Who knows. What we do know, though, is it can be very embarrassing to have our child, especially an older child, act out in a manner that others do not understand. If we do make it to a social gathering, we often end up leaving early feeling our presence is making others uncomfortable, whether anyone says anything or not.
#3 My child is a flight risk.
This is a big one. Some of our kids seem to have a relentless, driving need to just go. They head for the door at any opportunity and just keep going. They don't stop in your yard. They may not even have a particular destination in mind. They just go, and they keep going. We probably have tight security at our house, which makes it much more difficult for our child to escape, which eases our minds a bit so then we can relax and enjoy that conversation with you. If we're at your house, we'll be distracted from any socializing because we need to keep a super close eye on our child. That may mean always keeping him or her in our line of sight. We may not even make eye contact with you when we're speaking because those kids can be gone in a flash.
#4 My child does best on a strict routine.
Sometimes our kids don't do well with spontaneity. We can tell them what's going to happen, and what it will be like, but if it strays from that, well, see #2.
#5 My child needs a quiet space.
Sometimes our kids can be social butterflies, and sometimes the noise and other people being in their personal space makes them extremely uncomfortable and they need a safe place to hide. At your house, our child doesn't know where he or she can go to escape what's bothering them, which can further escalate the situation.
#6 Your house isn't child-proofed.
Our children can become aggressive in certain situations, and you have breakable items easily within their reach. We don't want them to break that special memento your Uncle Louie brought you from his exotic trip 25 years ago. Your kids and pets know not to touch it, but our child sees it as a within-reach projectile.
Please know that we want to socialize with our friends, but it may be impossible given the circumstances of the location. Please keep inviting us, and don't feel bad (and don't make us feel bad!) if we decline the invitation. Or maybe, ask us what you can do to help us hold a social event in our own home.
Lately I've been seeing a lot more about the non-invasive prenatal testing to "screen out" Down Syndrome (and other "flaws", "sicknesses", "diseases" whatever you need to call it).
Did you know the original intent of this non-invasive early test was not to kill these babies by terminating the pregnancy, but so that doctors would be prepared for predicted health emergencies in the delivery room. Don't believe me? Look it up. There was even an article about it in Discover Magazine awhile back.
I'm all for a woman's right to choose, I am. After having had an abortion forced on me because of the ruptured uterus, and then a couple months later finding out at a different hospital they would have handled it QUITE differently . . . that I would had the choice to keep that baby and have a super duper high risk pregnancy . . . oh yes, I am pro-choice. I wasn't given the choice. And I should have been.
On one hand, I get it. "Oh, that baby will be too much work and will cost us too much money. I don't want THAT baby." And you can lie to your friends and tell them you "lost" the baby. Or you can tell them the truth; maybe they'll even be happy for you. And secretly (or maybe not so secretly) you'll be SO glad you dodged that bullet, right?
But here's the thing. You might give birth to a "typical" baby - one that is perfect to you in every way. And the next thing you know, they could have serious head trauma from a tragic accident (or child abuse) that leaves them developmentally disabled; brain damaged or even a physical disability. Or they could develop terminal cancer. Or any number of things that could happen. This is what I want you to ask yourself: Would you then say, "Oh, that baby will be too much work and will cost us too much money. I don't want THAT baby."?
Think about that before you decide to terminate your pregnancy of a child with Down Syndrome. Mainstream doctors aren't very well informed about what having Down Syndrome today means. Sure, it means there could be some serious health issues and most likely there will be developmental delays. But that doesn't mean they can't grow up to be happy, healthy, loving, productive, intelligent members of society that go on to college, have relationships, get married, have families, have jobs, own businesses. If you help them, they can have all of that. Just like you would encourage your "typical" child.
And who knows, you just might grow as a person.
As we wrap up this year, it's hit me that I started this blog to be about Kaiden and his seizures and how he overcame them. And when his 5-year seizure-free anniversary hit this spring, I missed it. I completely forgot about it. I realized our "new-normal" had just become "normal".
Still today, because of what we've gone thru, people want to connect with me and pick my brain. And that's great . . . except my brain fried out on this awhile ago. I don't even know how long ago that was, but pretty much if you ask me anything about his seizures, I'm going to go have to read it here on this blog I wrote because I just don't remember anymore. Life took over. It was over FIVE years ago. I'm not saying I don't want to help . . . but the one thing I've learned from this journey (and if you read the blog from start to finish you'll see I didn't know this in the beginning - have fun with that - 5+ years of posts!) is that Kaiden's needs are unique - and so are your child's. I can give you a point to start, and I will, but I don't have all the answers. I DO think that nightshade foods continue to be a major undiagnosed problem - maybe 10 years from now I won't think that, who knows! - but what people have been asking me lately is what supplements do I give him that WORK. Sure, I can tell you that . . .but it may not apply to your child, because your child is UNIQUE. I've learned that Kaiden reacts opposite than he's "supposed" to, or that he needs a fraction of a fraction of a dose to get the same effect that others would get. He gets some supplements that are not recommended for DS, because they ARE recommended for autism. Which he also has. It's all the other genetic material he got from us + the extra chromosome + the seizure damage + who knows what else that make him the individual he is today.
It's gotten to the point Down Syndrome really isn't even a blip on my radar anymore. I mean, sure, I see it every day in the shape of his face and the single crease in his palms, and I certainly see the motor apraxia it gave him, that he struggles so much with. But his physical disabilities don't really phase me. Sure, at almost age 7 I'm still helping him manage his clothing. But you know what? He's further with clothing management than he was 6 months ago and that's awesome. My main focus is his speech apraxia, which is in my belief, 100% directly a result of his seizures. The autism I've learned to work with, so that we BOTH struggle less. The speech apraxia . . . well, it sucks and there's no way around that.
Do you have any idea how much I hate that he can't tell me the thoughts in his head? That he can't ask me questions about anything, or even tell me about his day? We work with the speech device we worked so hard to fundraise for. He has two speech therapists who work with him and his speech device as well as who-knows-what-else, plus me working with him. He tries, he really does. Do I wish he was further along with the device than he currently is? Most definitely. But if I don't accept him for who he is in this moment, and continue to believe in him . . . then it's like who he is in this moment isn't good enough. And that, I refuse to do to him. Sometimes he will out of the blue, say something with his speech device that is so completely appropriate to the moment or even the day, it blows me away. And while I'm elated that he was successful in sharing his thoughts with us, it makes me sad for what he's unable to tell me 99% of the time. But I can't let that sadness override and let waver my belief in him that someday, he'll be able to function on his own. I will not create a self-fulfilling prophecy. So many parents are told that their kid can't, will never . . . that they unknowingly teach dependence rather than independence because they believed the so-called experts (or dismissive friends & family) than believe in their child.
And I will not do that. Not to this awesome little kid who someday, is gonna grow up to be an awesome adult.
First off, I'm going to tell you I dislike that Holland poem that so many parents love. I'm supposed to love it too, right? Haha, NO. The reason I hate it is not because it isn't a nice poem. No, it's nicely written and all that, and many parents agree with its sentiment. But I don't. To me, that poem implies that we should all want Italy (a perfect child). And that Holland (an imperfect, or should I say, chomosomally enhanced child), while still very nice, is second best when compared to Italy.
Wait a minute . . . who said I'm supposed to think my kid is second-best? Not me. My kid's awesome. Different than typical, but awesome. A sometimes naughty, bratty, tantrum-throwing, defiant, loud, screeching, but still awesome kid. A kid who is loving, helpful, and kind when he wants to be. He just does things differently, so why should I think that's less than Italy? It isn't. HE isn't.
Sure, some things typical kids can easily do are a struggle here. But you know what? EVERY child has a struggle somewhere. So your kid failed at math but excels in sports - so society says THAT's okay. So your kid failed at (insert thing here) but is great at (insert something else here) and society says that's okay! You know what? It's the SAME with DS or anything else. My kid might be slower at or unable to do (something) but excels at (something else). I wish society would understand that simple thought. Case in point: Kaiden has an excellent memory, much better than mine. That kid is amazing!
So screw it. We're going to Canada. As in, WE choose our destination.
Which brings me to another point of aggravation: I am not of the Christian faith and do not hold traditional Christian beliefs where God is concerned (I think I was 7 yrs old when I realized this) - not that I don't believe in a higher power, just not the way Christianity puts it. I have other beliefs I feel quite strongly about based on my own experiences, research, and reading. I am a happy Pagan, someone who connects very strongly with nature. Pagans are NOT Satanism and dark magic - quite the contrary in fact. And Paganism has many different sects, much like Christianity does. I'm not going to get into all of my specific beliefs because there just isn't enough room in the world or time in a day to talk about it. But I will say, that I strongly believe that we choose our lives before we incarnate. We choose what lessons we want to learn. We choose who is in our lives, including our loved ones. I believe that Kaiden and I (among many others) mutually agreed to be part of one another's lives in this go-round to help each other learn specific lessons. My main lesson is patience with focus on nutrition and holistic healing. Kaiden taught me that.
So to that end, let me get to my last rant of the night: lately I've been seeing a few lists floating around written by well-meaning parents about things you need to do/learn or how to think/feel if you become a parent of a child with DS. First off, please cut out the religious beliefs stuff - because we all do not hold the same beliefs. Second, not every child with DS is the same. It isn't just an extra chromosome - there's tons of other genetic material mixed up with that. This means that each child is DIFFERENT. There is no *one* answer to what therapy or what nutritional supplements are best, because children respond differently thanks to all that other genetic material mixed in. This was yet another lesson I needed to learn (which Kaiden taught me!), and many more parents still need to learn it. A whole fresh foods diet, yes. But that goes for all of population, too, we'd all be healthier for it.