Saturday, August 29, 2015

The Experiment

Reblogging a blog post I wrote for another blog ... if that makes any sense...




THE EXPERIMENT

We arrive at church for Sunday School early. While I assemble two large salads, my children set up for our feast. The scent of pizza wafts through the door ahead of the steaming boxes. People of all ages gather in a circle to share laughter, prayer, and grace. Tuesday Night Sunday School begins.
It started out as an experiment. Sunday School teachers were difficult to find. Parents were choosing between dropping children off for Sunday School and attending worship, as doing both seemed too time consuming. We wanted worship to be the family focus on Sundays.
Sunday School was banished from Sunday mornings, participation by parents or guardians insisted upon. Amidst skepticism from Church Council members, Tuesday Night Sunday School was born.
Steyer TNSS Picture 3
After sharing a meal, the lesson begins, perhaps involving a skit, a song or a short video. Always, we — families, singles, couples, and friends — learn together. Each lesson, planned during a monthly meeting of the TNSS Planning Team and taught by our Pastor, Planning Team members or guests, is based on the theme chosen during the summer. This allows us to tailor lessons to fit our group’s needs....
For the full blog post, please visit: http://hope4ce.net/2015/08/26/the-experiment/

Wednesday, August 26, 2015

Give Us This Day



Would you be satisfied getting just what you need, only what you need, no more, no less, each day? Would you feel fulfilled?

"Give us this day our daily bread..." (The Lord's Prayer)

In today's culture, finding contentment with the luxury of receiving one's daily bread seems nearly impossible. We are inundated with images, ads, interactions, displays, and conversations that encourage us to want more, do more, and be more. It's difficult to get through a tv show, website, or even an app on your phone without being told your life can somehow be improved with a product, service, or experience. 

My heart yearns to be satisfied with receiving my daily bread. I find myself daily trying to banish thoughts of "if I just had, if I just could, if I was just able to..."

This year I've been on a journey of  Enough, and it hasn't been an easy one. It's easy to perceive Enough when life is easy. It seems exponentially more difficult as my health declines. And so I decide to do what I do for just about anything, I make a list - a list of what it is, for me, to receive my daily bread:

God: I pray often. My prayers range from a simple, "Help me," or "Guide me," to "Grant me patience that I may refrain from throttling this child and give me the energy and the words to deal with the situation appropriately." More often than not, my prayers begin with, "Thank you..." The background music in my brain is often one hymn or another, or a song from Camp Calumet or vacation Bible school. 

Food and Water: We are blessed to have enough, and even when our stores are running low, have the creativity to make what we have work.

Shelter: We have a roof over our head, an improved front wall of our house, a new deck, and are working toward necessary fixes and improvements as we're able. We have three bedrooms, one bathroom, and the ability to be creative and make our house work for the seven of us. Another bathroom would be nice, but not necessarily necessary.

Work: I give thanks daily for my husband's paying job and my ability to do volunteer work, even as I'm unable to maintain work for pay. The money my husband makes keeps our family fed, clothed, sheltered, and educated. Being able to give back to our church and homeschool communities is important to me, as is doing whatever else I can for other organizations and people we love and support. 

Love: It may not be all I need, as the song suggests, but it's definitely a necessity.

Family: See Love.

Friends: See Love.

Mobility devices: Not on your average Daily Bread list, but a definite on mine.
Medications and supplements: I couldn't function without them.

Connection: I need a connection to friends, family and the "outside world" when I'm unable to leave my house, or sometimes my bed, to participate in it. Blogging helps me sort through my thoughts and feelings, messenger and Facebook help me stay connected with friends and family, Netflix keeps me entertained, and all sorts of programs and apps help me contribute to church, homeschool, and other groups through volunteering my time and talents. Visits from friends are the best - especially the ones who are ok with me being in my pjs, my kids being in the same clothes as the day before, and my house overflowing with evidence that five children live here. Also ... connections away from home, especially worship, Tuesday Night Sunday School, Camp Calumet, and homeschool co-op.

Books: I suppose I could live without them, but my quality of life would be dramatically worse.

Sharpies: See Books.

As I reflect on my list, it seems like a lot to me. I also realize that although mobility devices are on my list, full mobility didn't make it. It's not something I need, or expect to ever regain. It would be nice to have, but not an essential part of my life, even when I sometimes struggle with my limitations. And if I'm honest, more money and another bathroom would be nice, but again, we make do and that's what being a joyful recipient of my daily bread is about. I realize that things that I love to do, like hiking; getting tattoos; exploring museums, science centers, and other places of interest; going to movies, plays, and concerts; and taking family trips are all wonderful things to do, but I can live a very joy-filled and contented life without doing those things as frequently as I may wish. 

I strive to fill my heart to bursting with the luxury of receiving my daily bread. 




Monday, August 24, 2015

Back to School


If I'm to be honest, I have to say that I'm SO EXCITED that it's time for children to go back to school. We had fun buying back to school clothes for eight children - through donations and for the New Beginnings program at our church that works with Social Services to provide brand new school clothes to help children get a good start to their school year. We joke that should we buy back to school clothes, they'd most likely be pajamas.



You see, when children go back to school, homeschoolers tend to rejoice at the fact that museums and science centers, movie theaters, beaches and other points of interest are relatively empty on weekdays compared to peak Summer months. For homeschool parents like myself who tend toward introversion and dislike large crowds, this is a huge blessing. For homeschool kids with sensory issues, this is amazing.

In peak months, museum and science center staff are usually very busy attending to myriad visitors. It's in the quieter months that my children have the opportunity to ask multiple questions, sometimes getting into deep discussions with experts in things they find interesting. 



Back to school time is also get ready for homeschool co-op time for my family. My kids are disappointed to have another month to wait until co-op starts. Epoch Arts Homeschool Co-op is a place where they can be themselves, where their differences are celebrated, and where creativity abounds. Two of my children will be teaching as well as learning there.



We love back to school!

Friday, August 14, 2015

So Far I've Refrained


"This is a butterfly. On the outside, it looks more like an owl. But it's a butterfly." ~Alia
I've seen facebook posts several times over the past week and finally found I could no longer refrain from responding. They contain rants about how a transgender woman should not identify as a woman. In one post, the author points out that since transgender women cannot have a period, give birth, experience miscarriage, or fear the possibility of a man being violent toward her, she lacks what it takes to be a woman. Another points out that fake boobs and plastic surgery aren't what make a woman.

I met a woman once who was born without a reproductive system. She cannot get pregnant nor give birth. She mourns her inability to have a child of her own. So according to over 200,000 likes on facebook, she shouldn't identify as a woman.

I know another woman who had a double mastectomy and decided to have reconstructive surgery. She has fake boobs. I don't believe that makes her any less of a woman.

And as far as a transgender woman not having to fear a man's violence - I beg to differ.

It seems to me that people have a very closed view of what it really means to identify as a woman. 

It seems that, as offended as people get about human beings expressing a gender identity that doesn't match their physical make up, they most likely have offended a large number of women who have either battled and survived reproductive cancers or who have other reasons for not having female organs, and/or women who are strong and self-confident. If I'm reading their words correctly, presence of a female reproductive system, the absence of plastic surgery, and women feeling helpless to help themselves seem to be the identifying factors of womanhood.

One of the comments had to do with the concept of a person not being able to identify as a widow, because she isn't one, so someone who is not a woman (according to her definition of a woman) shouldn't identify as one. Well, she should thank God she hasn't had to go through the pain of the death of her partner, but it's not the same. Identifying as a woman or a man has nothing to do with anything that's happened to you, but has everything to do with the feeling of who you are at your core.

To me, identifying as a woman has more to do with how you feel on the inside than what body parts you may have or lack, what you look like on the outside, what fear you experience, or whether or not you are capable of pregnancy or hot flashes.  In my opinion, having the right to call yourself woman has nothing to do with how you express your womanhood on the outside, whether it be flashy and flamboyant or Susie Homemakeresque. 

If you are a woman, no matter what your physical appearance, you are a woman. If you're a butterfly, no matter what your physical appearance, you are a butterfly. It's a simple as that.

And if you want to bring religion into this picture, please choose to do what Jesus did - love people. All people. And leave judgement to God.

Thursday, August 13, 2015

What Aspergers Looks Like

I was talking to someone on the beach one day after apologizing for my oblivious to personal space Aspie child. She asked how one can identify a child with Aspergers, as she wouldn't have known by looking at him. So I thought about it...


This (above) is what Aspergers looks like. And this...


OK, so this is what my eldest son's hand looks like, because apparently having one's picture taken is akin to putting Samwise Gamgee's elven rope around Gollum's neck. ("It burns us!") We swear we're going to make an entire album of pictures of Alex's palm. 

He actually looks like this:



Now, this is quite a rare picture of Alex, because 1. he's looking in the general direction of the camera, 2. there's not a hand to be seen, 3. he's smiling (not that he doesn't smile, it's just he doesn't smile in photos), 4. he's outside (then again, this is his one week outdoors at magical Camp Calumet, the only place we discovered thus far where this child will voluntarily be outside) and 5. it's in focus. I swear Aspie kids have some sort of aura that makes cameras go out of focus when taking their picture, or just plain makes the camera unable to focus on them in the first place.
  

This is a more typical photo of my not so typical teen:



The scowl is not too severe for the affliction that is having one's picture taken. The miracle of this photo is the lack of hoodie. This child wears a long-sleeved hoodie in 90 degree weather. We were at the beach, so that could explain it. Well, it would if he didn't wear hoodies to the beach as well. Come to think of it, both my Aspie children have hoodie collections. And one - not this one- has worn a hoodie in the lake. It was late April in New Hampshire, after all. 

There is also a child with Aspergers in this photo:



Drama Camp at Camp Calumet is one of the highlights of Coren's year. We go to week one of Camp because it's Drama Camp week. He is not one of the starfish (although the starfish with the red shirt showing is his sister)... he's the Prince, who, quite tragically, has drowned and is getting turned into a magic fish by the starfish. He did excellent in this role, as well as the other role he had in the play. He even, much to our shock and amazement, said ok to having make-up applied to his face - he had absolutely refused last year. Things on Coren's face, besides his long hair, usually cause him to freak out. This includes sunscreen, water, and air. Yes, air. 

This is a more typical photo of my not so typical nine year old:



He loves to play cards, games, do puzzles, and that sort of thing. He most likely would have ducked had he realized I was taking the picture. I've been told that this child couldn't possibly have Aspergers because he's so social and "normal" acting. Perhaps his flapping is passed off as a normal behavior for an excited child ... and maybe we cope with his sensory seeking needs so well they're not as evident to the untrained eye.

And then there's this picture. 



Simple street noise overwhelmed him in that moment, after emerging from a hike in the woods, harsh sounding noises assaulting his ears after hearing only birds, wind, and water. When he was done acclimating himself to the auditory differences, he got impatient waiting for Daddy to finish the hike and a little anxious to leave and started flapping his arms. Aspergers looks like a child trying to take flight as well.

Aspergers doesn't necessarily look different from typical. It can look louder or quieter, isolated or overly social, steady or flighty, pacing in circles or flapping arms. Mostly it just looks like a kid in a hoodie. At least in my family. 




Thursday, August 6, 2015

Vacation Photos



This photo of myself, taken while on vacation at Camp Calumet, is difficult for me to look at. I have battled my weight my entire life. At one point last Summer, I was losing weight and feeling more comfortable in my skin. Then I was taken off psoriatic arthritis medication for seven months for neurological testing and put on prednisone. My energy levels plummeted, as did my ability to walk ... to move. I gained weight. 

No matter what I eat or don't eat or how small I make my portion sizes, I have steadily gained weight ever since becoming less active. I've tried weaning myself off of the prednisone, only to have inflammation take over my body and severely limit my mobility and ability to function. Even back on PsA medication, I'm still not even close to where I was ability-wise before I went off of it.

I do not like weighing this much. I want to be a healthy weight, a task not easily reached when battling chronic exhaustion and overwhelming pain. This photo is painful for me to look at - there is a disconnect somewhere between how I look and how I feel I look. I don't feel like I weigh as much as I do. 

And then I look past the weight. I see someone enjoying herself. Someone reveling in natural surroundings. Someone hiking on crutches because that's the only way she can get through a hike - and not just hiking, making it to the top of some beautiful trails to enjoy amazing views. Someone who is living life to its fullest despite the obstacles in her way. 


Jackman Ridge, Freedom, NH
Castle in the Clouds carriage trail,  Moultonborough, NH
Beaver (photo by Alia), White Memorial, Litchfield, CT

Someone who, when her legs are failing her, continues her adventures via kayak whenever possible, and wheelchair when necessary. 



For my own mental health, and in order to set the example I want to for my children, I need to work on feeling comfortable in my body no matter what I weigh. I need to focus on moving as much as my body will allow and being as healthy as I can, not on a photographic image or a number on a scale.  I'm not sure quite how to go about this change in attitude and perspective, but I'm working on it.