Monday, June 08, 2009

It's Not Easy Being Green

This post is on that has been on my mind for a long time, but I have hesitated to post it. Now that I know several people actually read our blog, people I know in real life, it makes me tempted to be....less than fully honest sometimes and full out CENSORED at others. I don't want to hurt anyone's feelings. But at the same time, when you click on our blog, I trust that you want the truth, good, bad, and ugly. So, I may offend. It is genuinely not my intention. I am just lonely and at a loss at where to even go from here.

So, here it is. It is lonely where we are. Brandon and I talked about this last night and he feels the same way. In fact, I have had 2 other friends tell me they feel the same way in their respective situations. So, I suppose it is not uncommon to feel alone, even when you have friends. We certainly have friends. Kind, loving friends, and family too. But we do not have any friends who are in the same boat as we are. We have a few friends with triplets, and that is helpful. In many ways, I feel very connected with those girls because our day to day is very similar. But none of them has a child with Autism. I know a couple of people who have a child with autism, and that is ok. Only one of them is doing Biomedical intervention and she is an online friend whom I have never met in person.

There is no one on earth that I can call (other than our doctor) and say the following to "Kyan is really yeasty, and I am thinking about trying Biotin with the GSE or possibly OoO. What do you think?" and actually get a response.

I have a fiercly loyal friend who is incredibly supportive of our kids and our decisions and she rocks. We are just in different seasons of life at the moment, so that makes it hard for both of us. Our day to day life is so different from each other's. I have A (as in 1) close friend who uses cloth diapers. I have made friends with many of my customers, which I LOVE but that is not the same as a buddy to run around with. I have 2 close friends (from high school & college days) and several casual friends (through Holistic Moms Network) who are into organic food, and have serious concerns about vaccines, environmental toxins, etc. But those 2 close friends are geographically far away, and the Holistic Moms friends are people I only see occassionally, usually in my store. They speak my language, which rocks, but none have kiddos with Autism. Perhaps there is a reason for that--all that 'clean' living, breastfeeding, and non-vaccinating. :)

The local friends we do have are kind about our children but so much of our life is completely foreign to them. So it just naturally makes a disconnect that is hard to forge. Without sounding like I am giving a dissertation on mitochondrial dysfunction, much of the kids' lives is just truly baffling, so it is best just not to explain, I suppose.

Having friends while also having triplets is very hard. We are a playdate all by ourselves. When you add special needs issues that entail anxiety, food allergies, and social challenges, it just makes things harder. We took our kids to a cookout at a friend's house recently and the other children basically ignored them. At one point they literally pushed Kynsie & Braylen out of the room and slammed the door. (Kyan never got in the door to begin with. He was stimming on the stairs) My kids were bawling. I was sitting there and said "guys that is not very nice". They promptly told me that my kids were "messing up their game". Now, I know that kids don't mean to be harsh. It just goes with the territory, but my heart broke. Kids have favorite friends and that is the way it goes, but why do I want to go through all of the work it entails to get my kids to a gathering when they will only be left out anyway? Having kids with special needs and trying to force them into 'normal' social activities is like cramming your foot into a size 5 when you know in your soul you are a size 7 on your best day.

And then for good measure you throw in the vaccine issue. It's such a passionate subject and everyone has an opinion. It is incredibly hard as friends rattle off information that I know is incorrect or misrepresented, but that was told to them by someone in a white coat, so there is positively no point in having the discussion. It is so HARD to keep my mouth shut because by doing so, I feel cuplable for any damage or harm that befalls their child--reflux, asthma, eczema, food allergies, diabetes, autism, ADHD.

I feel it is my responsibility to speak up for kids who can't speak for themselves because doctors and drug companies simply aren't being forthcoming about the real risks involved. Side note*The data of 1 in 150 children has Autism is actually 7 years old-as in from 2002. The data from 2005 won't be in for a few months. I expect to see that ratio cut in half. :(

So, all of this does not bode well for friendships. What am I to do? I am HUGELY conflicted about this subject. Every time a friend tells me that there child got all of their shots and they are fine--with the implication that worrying about vaccines is waste of time, or "so clearly you are wrong about all of this" tone of voice, it is literally a punch to the gut for me. It's like having cancer caused by years of smoking, and warning your friends (and anyone who will listen) that smoking causes cancer and showing them data and research and proof, and even personal experience, and then watching them light up in front of you every day. It is hard, with that much being so very different to maintain a friendship. I am in the middle of the fight of my kids' lives, and it's not even on the radar for some friends. I am sure they feel they are supportive but we live on different continents. I feel like someone dropped me in China and I can't find a soul who speaks English.

So it is lonely here. I am in a stage of life that I SO want to be involved in close friendships. I need that support. I can get it from some triplet moms, or church friends or even old friends. I am tempted by all 3. Triplet moms get the chaos of our day to day that is so different from other families. They understand the dynamics of our children's relationships and the unique issues we face. Church friends have the same religious beliefs and that is a great comfort. Old friends you don't have to explain anything to about why you are who you are, and there is great peace in that. BUT with any of these groups, if we differ with vaccines and other parenting things, it puts so much of our daily life 'off the table' if I want a pleasant discussion. And while I do want pleasant discussion, more than that I want nothing to be off the table. I don't want to have to tip toe about our life or sit and bite my tongue, or just avoid certain subjects like the plague, when so much of my life is involved. If I keep cutting away, there isn't much of me left. And what kind of friend am I if I am not myself? A pretty shallow one in my opinion.

All of this is to say that I don't know what my options are. I guess the ideal is to get different support from different people. For some reason that just isn't working out for me.

6 comments:

Liz said...

Hi Sunny! Thanks for writing this post. I find so many of your posts hit home for me. I have 23 month old BGB triplets, 2 of whom have autism. They were diagnosed in April. I took them to see Dr. Demio a few weeks ago and we are in the beginning stages of the DAN protocol. I fully understand a lot of what you are going through and I can honestly say that because I am living it too. If you would like to chat my email is my3sweetpeas@aol.com

Elizabeth :)

P.S. Can I copy and paste your post on my blog? :)

Elaine said...

Sunny, you are so brave. I have not had to deal with autism personally, but I so get what you say about vaccines, food additives, environmental effects, etc. because of my breast cancer. I even try the supplements you mention that you give your kids. Until people take a stand (you and Brandon) there will be no cures, no new vaccine schedule, and no new research because of the people who are making billions off our misery. Cancer, like vaccines, is a money maker and unfortunately money will win over cure and prevention every day of the week. So I applaud you for taking a stand and doing the research. This is your blog so put it all out on the table. People may disagree with your views, but my guess is that those people are not facing the fight and your blog is a service to those to are. So shout it to the roof tops sister. I'm listening and I love you.
Elaine

Mindy said...

Just so you know, nothing with us is ever "off the table." Unless God sees fit to bestow a miracle on our family I will never be able to understand the parenting multiples dynamic, but I'll still listen.
I so wish I could pick up our family, sell our house & plop ourselves down in Knoxville so I could be there for you. I think you already know that.

Jon and Melissa said...

i meant to write you this long thing. I will save it for an email. I feel similar things about the way we are living. No vax, holistic/green living, etc. When we go to playdates all the kids are eating it cheetos and koolaid I cringe. I so feel alone and no ones understands why I am doing the things I do w/ the kids. I hate to be diff. sometimes. But then I am ok w/ it some days. I want to fill like I fit in and cool. But lately I feel God has given me tougher skin and I actually had 1 hardcore miracle happen at the hosp w/ a Mom whos son was immune def. and she did not vax. I told her a little of my story w/ E and non-vax. Who cars if I lose my job b/c I talk non-vax w/ certain patients. At least I lose it over something big rt...Anyway!!! She sat there wide eyed and said, "I have never met someone who talks like me before. No one understands me. You speak my language." I almost cried b/c that AM I was so down and lonely and really needed a good vent on some things but no one I can vent to really but my hubby. I gave her my # and really hope she calls me. Who knows!!! Anyway all that to say I hear ya. I know E is not autistic and I don't have 3. But he almost was and we still deal w/ some sensory stuff and people make lame ass (sorry) comments like "why does he do that? What is his problem" "oh, now why does he cover his ears." "My child never does that. what is wrong w/ him" I want to scream, Leave me and my kid the F alone my kid has sensory issues you moroan. But that is not very nice either, HA!!!!

Kate said...

Sunny- YOU are the reason I delayed and split up my kids vaccines. Who knows if I needed to, but I feel better knowing I did. While I can't relate to all you are going through with your family, I do hope you know you don't "bore" me with all the "green knowledge" you have. I find it very informative! Please count me as someone who wants to be there and one who is always willing to listen!

Tracey said...

(((HUGS))) Sunny, So much of your post I felt I could have written. That is why I read your blog. I feel comforted, among my own kind if you will.
Are you involved in an autism support group? I have only been to 2 meetings but they make me feel better.
I like you, keep my mouth shut a lot. The difficult part is that autism sort of takes over and you can't help but talk about it. You need to talk about it. Not to mention that you want to tell them about toxins, gmo foods, vaccines,etc because you care about them and want them to know the dangers. Sometimes I feel like I am leading a double life in front of friends and family. It is really weird. I know I am online but I support you and what you are doing and saying. You are not alone!