Wednesday, October 19, 2011

The Cults of Mothers

So there was something interesting I didn't know when I was pregnant, before I had Seth . . . all about moms and their groups. Just to make myself giggle I'll call them cults. The cults of moms. It's a bit ominous isn't it?

Okay so what do I mean by the cults of moms. Well you have the yoga moms, the breastfeeding moms, the formula moms, the organic food moms, the disposable diapers moms vs. cloth diaper moms, there are whole worlds of moms that have differing views about everything. So many choices in being a mom today. Are you going to use cry it out or are you going to comfort your child?? And there are moms out there that are such sticklers for these rules, for these ways of life that I compare them to being cult like.

I mean who really cares if you are going to wear your baby or stick them in a stroller? Or if you don't want to breastfeed? Or if you don't introduce your child to cow's milk but you want to use goat's milk instead because it is more gentle? I mean who really gives a flying fuck?

Apparently a lot of moms give a fuck. So what does this post have to do with Down Syndrome. I mean not that everything I write has to do with DS, but it is in a lot of what I write. Well I found something really interesting. The moms of children with DS also have their own little cults. Their own followings. So I wanted to review a few of the debates that go on in the Down Syndrome community among parents and why each side feels like they do and yes I'll even give my own opinion. Not that you should give a flying fuck about my opinion . . you should do what is right for you and your family.

Now I'm going to start off with the less controversial ones and move on to the bigger ones.

Breastfeeding vs. Bottle feeding

Breastfeeding is great, it's a beautiful thing. Here's the thing though, a lot of kids with DS have a poor suck reflex. Seth physically could not breastfeed. He couldn't do it. So after six months of pumping being a first time mom of a kid with DS, my supply ran out. Stress, aggravation, lack of sleep . . . so many reasons why it could have happened but it did. I felt horrible. I felt like I failed at something that I really wanted to do with my child. I wanted to give Seth all the nutrients his body needed from my breast milk and it didn't work out that way. And a lot of people then made me feel bad about this. Like it was my fault. How dare you make me feel bad about that, how dare you insinuate that I did something wrong for my breast milk to dry up. Sorry I had to get that out.

So while I do feel that breast is best, I understand that we are all different and some of our lives doesn't enable breastfeeding. Some moms have to go back to work and can't pump, some moms physically can't breastfeed and some moms just don't want to - and that's their choice. Remember whatever works for you and your family is best.

Baby-wearing

Okay so baby-wearing is what some moms call "crunchy", meaning it's like granola and it somehow means you are one of those hippy dippy trippy moms that wears their child and breast feeds and does the whole organic food thing. Well not these days. Tons of people, moms and dads, wear their children. So where is the debate, where is the problem? Well some physical therapists will tell you that wearing a child with DS causes their hips to splay which is not a good thing because of their super flexibility. There are other ways to wear your child where their legs aren't splayed far apart, such as wraps that kind of cocoon them. If you are worried about their hips then go with a different type of baby carrier. Personally Seth's PT told us that as long as we weren't using it more than 1-2 hours a day then it was fine.

Nutritional Supplements
This is a big one in the Down Syndrome community. Now when we think nutritional supplements we think vitamins and hey aren't vitamins good? Well it depends on your thought process about DS. Some parents think that the chemistry of people with DS works differently than with typical people and that certain supplements (cough Nutrivene D) will help their child physically and cognitively.

Ok so for the first 3 1/2 years of Seth's life I didn't buy into it. But the other day I did and I ordered the vitamins and we will be starting them soon. Why did I do it? Because I did my research and saw from blogs and message boards and other moms that doing this nutritional supplement program really helped their kids. And as a mom if I don't try everything that I think may work then I feel really guilty. Like what if this does improve the quality of Seth's life?? What if it makes a big difference? I don't know if it will but I'm not willing to pass it up if it can. So I will start the program with Seth and let you all know how that works out for us. I do know one thing . . . it can't hurt.

Sign Language

Really sign language is on this list? I'm all gung-ho for sign language, you all know that. But some moms think it will actually hinder verbal language in the long run. I don't think so. Speech is a big area in which lots of kids with DS struggle. And a lot of people make the mistake in thinking that the struggles with speech come from cognitive inability. It doesn't. Seth understands everything that is said to him, which is what is called "receptive language". However his "expressive language", the language that he responds with, is lacking (well the verbal part anyways). Why? Well IMO it all comes down to the low muscle tone and a physical inability to produce the sounds. Also for other children with DS it can be due to hearing issues which I talked about it my oral motor post. Mainly I believe that any inability for verbal output is due to a physical issue, not a cognitive one. Let me mention that there are also many kids with DS that do really well with verbal language so it's not an issue for every child with DS.

So why not sign language? Why not give your child a large vocabulary and the ability to tell you their wants/needs in a way that they can? Seth is becoming really verbal these days, repeating everything and spontaneously saying words in context to the situation. But the thing is, he already knows these words, he doesn't have to learn them from the start. So here Seth is, with the knowledge of 100-150 words through sign language, and now all he has to do is verbalize them. I think that is much easier to do than learning a word instantly and having to reproduce the sound.


Oral Motor Therapy

We went over this in my oral motor therapy post. Some moms dig it, some moms don't believe it works because there isn't enough evidence. Personally I think my experience with Seth and seeing it work for other kids with DS is all the proof that I need.

Diapers vs. Elimination Communication

Ok so this might not be an exact debate but it is something that moms choose. Do you put your child with DS in diapers or do you keep them bare and cue into their elimination cues. I don't know if you have ever heard of elimination communication or EC for short, but it is the act of keeping in tune with your child's bowel movements and urination so that you can read these cues and then put your child on the toilet when they have to go. The process is that eventually the child with understand to use the toilet and will be potty trained earlier. I don't really know that much about it because I don't do that with Seth. Seth is still in diapers and we are potty training him the traditional way, with a potty and all that jazz. If you are interested you should do some research into EC.

the word "retarded"

Some of us DS moms hate the word, some of us don't mind, some of us it mildly annoys, some of us it outright infuriates. I'm with the infuriate group. I hate the word "retarded". I hate hearing it in the street, by medical and educational professionals, by other parents and friends and family. . . I HATE IT. It's derogatory, it's hate speech and it's a horrible thing to say to someone.

These two are just too big to talk about here but they are on the list. It's good to do the research and find out what works for your family/child.

inclusion vs. special education


vaccinations




There is something I want to state here, something that has bothered me about the DS community. You see for moms that don't like certain ideas/therapies/theories. . . they keep the information away from other moms. For the first 3 years of Seth's life I followed online communities and did what they said was "right" to do with my child. I followed their lead because they knew better right? Well through some great connections I found different ways of doing things, different theories and choices to make for Seth that will help him along. I'm angry, angry that a group of parents that I trusted decided that information wasn't good enough for me to have. No instead I had to scour the Internet searching for this stuff, stuff that could possibly enrich my child's life. I get to make the choices about my child's life and what I choose to use. Information should be available and given freely, even if you don't agree with it.

Let's be honest here. There isn't much research done on Down Syndrome. The funding is all put into Autism these days and I get it, I do, but a lot of these theories don't have scientific evidence, they don't have studies done that prove them 100%. Well you know what? That doesn't matter to me. As a mom if I don't try everything, do everything to make Seth's life better, to give him all of the tools he needs to survive, then I'm not doing a very good job am I? So I am going to try new things with him, I will pursue and find all of the hidden research on the Internet and I will be that mom who doesn't follow that pack. Not anymore.

6 comments:

  1. I'm a little curious about the hidden information. Do you think it was a deliberate hiding or just lack of interest? I'd also like to know what I might be missing for my bear cub. As for asking for information to be available and given freely, I certainly don't even think to spout both choices if I'm on one side. I mean I used cloth diapers and I certainly don't go around talking about the benefits people think they get from using disposables. Since you're vague on the specifics I could be way off, of course, and you are right we have to do what we think is best for our kids.

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  2. Ha, you are so right!!! There are different cults when it comes to Mothers...Me I belong to the "I don't give a shit how you do things, I do things MY way", cult! Sounds like you belong to the same one :)

    I have to admit though when Russell was born and we found out he had Ds that shook me to the core. All of the sudden I felt like I didn't know what I was doing so I did what everyone else was doing or said to do. But over the past two years my confidence in knowing what is best for MY kids and what works for us has come back....

    Anyway I love it when you post, you always have great topics on here!

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  3. Kimberly - I want to say that it's not intentional but I do know that on certain forums of moms of children with DS certain information isn't given out as freely as it is in other places. Or you have to do a lot of research to find the information, or talk to the right moms who know the information. But I didn't think of it your way - that since you as a mom do things one way it makes sense that that is the advice you would then give. . . . it's interesting. In fact it just might be the reason that some of the information I had been seeking wasn't available - because parents weren't using it.

    Personally I think the information that is most lacking or hidden about DS in targeted nutritional therapy, information on supplements such as Nutrivene and the like. Meaning that there are certain vitamins that can help with physical/cognitive functioning. A lot of moms of children with DS that I have encountered are against it and won't even venture into giving out information about it. Just like some moms of children with DS give their child Prozac because it is supposed to help with cognitive function - this is stuff we don't normally hear about. And while I understand the controversy, I think we should all have the chance to gather the information and make our own decisions as parents.

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  4. Jenny - thanks - it's been a while since I've posted but this has been on my mind for a while. I've been sick, trying to figure out exactly what is going on with my body - I think I'm gluten sensitive so a gluten-free diet has been working for me.

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  5. And don't forget about the neurodevelopmental programs (www.nacd.org). That is fairly well hidden too.

    Great post. I loved it. And totally agree with the whole mom cult thing!

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  6. Really enjoyed this post! Information should be given as freely and as frequently as possible! How can we be expected to make the best decisions if we don't have all the info? I spent months in misery before I finally found people online who told me alternative ways to help my child. What a relief that was!
    You go Girl!

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