defected

I've defected. From the Lutherans. I've gone and joined the Unitarian Universalists.

For some reason this is not a big deal to me, despite having been baptized and confirmed Lutheran, and always having been proud of my Lutheran heritage. Even the fact that I decided very quickly to join this church is no big deal to me. It just felt right. I go to services and it just feels RIGHT. It's the way I've thought about faith for half of my life, and lo and behold! It isn't anything new or different, it's been there all along, I just had no idea that there actually is a whole religious movement out there that embraces what I also believe.

Maybe it was the statement about being a place for a free and responsible search for truth. Maybe it was the commitment to justice, love, and helping one another. I can't imagine anyone out there (ok, anyone who isn't a sociopath) who can't agree to justice, love and helping one another. Maybe it was the fact that the church I'm attending has made a commitment to be a religious home to all people, including those of "every mental or physical ability", and I saw a place where my younger son will be welcomed as he is. I was struck, after hearing the statement several times, by the wording: every mental or physical ability. Not DISability. They see the ability. I love that. Plus I have actually seen people with developmental disabilities in the congregation before, which makes me believe that they are walking their talk.

Mostly, it's that the sermons make me think. They are not just long-winded treatises about a passage from the Bible; they are like having a deep talk with someone about some subject, some way of living, some action that will make you a better person and the world a better place. The readings are taken from stories, from poems, verse and rhyme, and while they would seem terribly out of place in a Christian church, they fit right in in a UU church and serve to remind us that the truth about how we should live and treat one another is around us, in every person, every day, if we just notice it.

Plus... there's no dogma. You don't have to believe any specific thing to be a Unitarian Universalist; there is no creed you must confess belief in (I think the first line of the Apostles' Creed - "I believe in God, the Father Almighty, Maker of Heaven and Earth" would probably send at least 1/3 of the congregation flying out the front doors - BUT: if you believe that, that's completely okay too!). What I love to think about is that when I sit in that (absolutely gorgeous) sanctuary*, I am surrounded by people who may be taking in the readings, the music and the sermon in an entirely different way than I am, and that it's not only all right, it's GOOD. We've all come together for the common goal of being better people on our own faith paths.

T goes to Religious Education (RE) and I think my mom was a bit taken aback the first few times she asked him what they talked about in RE and he answered "the wind", "sunlight" and "water". (4- and 5-year-old curriculum is about the world around us!) I am sure she will be pleased when he gets up into the grade school RE program and they get around to studying the life and times of Jesus. In the meantime, he loves it. Yesterday he had both RE in the morning and a birthday party in the afternoon which involved hot dogs, cake and swimming in a pool with a fountain, and when I asked him at bedtime what the best part of his day was, he said "Sunday School". He would not rather stay in bed or at home on a Sunday morning; he gets dressed for church voluntarily. He likes to sing hymns and he tells me he likes listening to the readings, but I think that's because last week's reading was from "Charlotte's Web". (Now he thinks that all of the readings in church should be about pigs and spiders.)

I'm happy to have finally landed in a spiritual community that I have absolutely no reservations about. In addition, Jo backs it. She wanted the boys to be raised Quaker, but I felt odd leading the search for a Meeting, not being the person who knows what she wants in a Meeting. I finally realized that I don't want a Meeting. I like talking, I like worship in song.

Thank you Catherine for inviting me to church.

*The church purchased their building from a Jewish congregation in the mid-90s. It is large and beautiful, and many traces of its Jewish roots are very evident (each pew has a star of David on its ends, for instance). I love walking up the stairs and imagining little boys in yarmulkes chasing each other up them half a century ago. I love that the church has not been stripped of its Jewish heritage. To me, it's another way of honoring all of the different paths that are out there searching for truth and meaning through faith.

sorry

Sorry... I missed April.

Sorry... to E for not being able to catch a full nap because he's always being strapped into the car seat to go drive big brother here and fetch him there. The repercussions of this are miserable... non-stop tortured crying by an overtired baby and mama with seriously frazzled nerves.

I am just comparing T's babyhood to E's and feeling really bummed for E... compared to his big brother, he gets so little individual attention.

A typical day for a 5-month-old T would have been: wake up, eat, be held and talked to, take a 2-3 hour nap in undisturbed quietude about 3 hours after waking up, get up, eat more, be played with and held and talked to, take another nap, maybe go visit a neighbor... rarely go anywhere in the car. Have full attention of both parents in evening, be put to bed after being rocked, nursed and sung to sleep.

A typical day for 5-month-old E: get up, be fed, sit in a chair and watch mama prepare breakfast for big brother and then watch them eat it, be buckled into car seat, drive to school, take mini car-nap, come home and wake up from mini car-nap, lie on floor and have mama try to get him to play with toys, eat, take another little nap around 1030 or 11, get buckled into car seat again (usually being woken up from nap in the process of buckling), go to school to pick up big brother, watch mama make lunch for big brother and then watch them eat it... accompany mama and big brother on walks around neighborhood or go to appointments... attempt to fall asleep but be disturbed by big brother, or fall asleep and wake up 20 minutes later. Rinse and repeat until evening comes, baby is overtired and crabby and will only fall asleep after much exhausted crying.

Today at least, after the third disruption of nap (instance one: waking up too early for some unknown reason after having been awake for 1.5 hours in the middle of the night; instance two: mama attempting to remove him from car seat after dropping brother off at school, because he sweats like crazy in the car seat because the fabric doesn't breathe and three: being moved while napping into the car seat to go pick big brother up at school) and third onset of full-bore screaming and crying which could only be partly remedied by being carried (upright only, thankyouverymuch), jostled, bounced and rocked, he fell asleep and I lay him down for a nap in his bed with the door tightly closed. I managed to pin the cat to the floor right as she was trying to disappear under the bed in that room and shag her into the next room but only narrowly escaped disaster when T came up the stairs singing some sort of rhyming nonsense at the top of his lungs. I guess my Maternal Look of Death worked because he piped down for 15 seconds, long enough for me to get out of the room and shut the door before he woke E up AGAIN.

More to report about hearing loss but that will be another day.

special education

Is E. special?

Of course he is. But aren't all children special?

Does that extra 21st chromosome make him more special?

Does a disability make a person special, or more special, or just a person with an added challenge in her/his life?

E. isn't going to know that there is a different way for him to be. There is no other "normal" that he is changing from or moving toward. He is growing to be the person he was meant to be. It's our job to see that he gets all of the support necessary to reach his full potential, and to provide discipline and shape him morally into the kind of person we want to be around, and the kind of person we want our child to be in the world.

But extra-special? Touched by God? An angel on earth?

Can you hear me raising my eyebrow?

And how is any of the stuff we do for him different from what we need to do for our older, typically-abled kid?

All of this thought processing came from seeing the movie Praying with Lior. I was really excited to go see it - it is a movie about a Jewish boy, Lior, who has Down syndrome, and the preparations for and event of his bar mitzvah. The trailer made it sound like this kid is a really amazing young man with some direct line to God.

I loved the movie, it was wonderful and very interesting, but I took a far different message home with me than I expected: any child who is surrounded by love, attention, patience and support and is given the opportunity to embrace the things that make her/him happiest will thrive.

Lior was a pretty typical teenager in the movie. His siblings were kind and, for the most part, supportive (although his little sister was obviously fed up with all of the attention he got). It also was obvious that he loves music, rhythm, and singing. Both of his parents were rabbis, and he was immersed in the world of Judaism. It clearly played a very strong part in his family life and he also went to an Orthodox Jewish day school. His classmates were AMAZING in their understanding, patience with and compassion for him. His synagogue embraced him.

Are you seeing what I see? Is this kid set up for success, or what?

He loved music, rhythm, singing, and in what context was he doing the most of this? School and temple. And he got a lot of support and positive feedback for it. Davening (prayer) obviously made him very happy, so should we be surprised that he would daven sitting on the play structure in the backyard? Is it a shock that he would want to make his bar mitzvah, and is there really any reason at all to believe, with the amazing support he gets from his dad and step-mom in preparation for his bar mitzvah, that he shouldn't achieve it?

It is a big deal, because our society must not expect folks with disabilities to do these things, and therein lies the problem. I'll admit that when E. was born, I felt like I had to adjust my expectations for him on a major scale, and I am realizing that this is not the case. Or perhaps he is showing me that it's not the case. Okay, so he probably won't go to college. Know what? There are a lot of people who don't go to college, and just because he may have a lower IQ doesn't mean that he won't have a strong work ethic, nor does it mean we shouldn't have high expectations for him. It means we shouldn't expect everything to come easy and for school to necessarily be a snap.

My mom made a comment the other day about whether or not 'so much' education is 'worth it' for kids with disabilities and if it wouldn't perhaps be better for them to get more education in life skills and not worry about the academics as much. I was a bit offended. Isn't it my job, as a parent, to teach my sons their 'life skills'? I remember Life Skills Class in high school, which was about cooking basic food, managing your finances and paying bills. My high school counselor suggested I take it because my schedule needed filling out and, in her opinion, was too heavy in academics (I wanted to take Nature Writing instead of Life Skills and Nature Writing remains, to this day, one of my fondest memories of high school English - thanks Mr. Sushak - ). I told her that I had been helping my mom write out bills since I was 10, already had a checking account, knew how to cook and certainly didn't need a class to teach it to me. (But gosh, think of what an easy A it would have been.)

If someone had told Connor Gifford that he had to take Life Skills class instead of history, would that really have been meeting his needs as well?

(But at the same time, why is Connor's book so inspirational? Connor, buddy, you are awesome, and I love your book, but I love your book because you have created a very concise account of American history. I'd like to see it in most schools. And I do find you inspiring, because you wrote a book! And it's been published! And I'm guessing you didn't let anybody tell you no, or that you can't write a book or be into history because of your Down syndrome. THAT is the inspiring bit.)

But I'm hoping, waiting and working for a day when it's not amazing and incredible that a person who has disabilities does something that they want, pursues something that interests them, or just wants to do what their siblings do. If we get to that point, it hopefully will mean that it will be the norm for the rest of us without disabilities to be ready, willing and able to go the extra mile to support them in reaching their goals.

I'm guessing I will read this in a few years and find it naïve and idealistic, but it's where I'm at now.


4 months, first haircut

the three children thing

Resolution update:

Pumping went nowhere. I returned the pump and gave away the herbs, tea and balm. Life goes on with bottles.

Blogroll: I might get there one of these days. ;)

Three children: OK, here's where the urge was coming from. One, T is a stellar older brother. He cannot wait until he and E can share a room and a bed. He comes into our room every morning and I'm now pretty much chopped liver... he wants to check on his brother. If E's still sleeping, THEN maybe he'll deign to cuddle with me. He likes to play with him, build "nests" for them (arrange the comforter into a circle around them) and is very concerned if I am around and E is not. A good example of that is the morning that I picked T up from school and took E into the school in his bucket seat due to the cold. Because it's so crowded at pick-up time, I left E sleeping in his seat in the hall. When I came in to greet T, he started looking all over my body for E - under my coat, on my back... and was very concerned that he didn't seem to be there.

Secondly, much of the urge comes out of concern for E in the future when we are no longer around. I know that it's fully possible that he will live on his own with a job that pays his bills, and will be eligible for health care through the federal government. He'll probably have someone through an organization who will help him with paperwork and other things that he comes across; it's not all going to rest on us as his family. He may live and work in a wonderful community like a Camphill Village or Community Homestead. But still, regardless of his level of independence, I think about the support I would like him to have, and I would like to see his family giving him that support more than an organization like PACER or ARC.

I have dismissed the idea in my head that T will consider his little brother a 'burden' when they are older. I would guess that it is more likely that T will see him as a responsibility, and will be someone for E to come to with questions and when he needs support. When it comes to support within a family, I have learned this year that two supports are better than one.

Jo has been dealing with her mother this year, and she's an only child. This means that all of the discussion about what her mom needs, all of the decompression, all of the unhappiness falls to me as her wife. I'm not upset about this, or think it's bad. She also shares a lot with her mom's friend who lives close by Jo's mom (whom Jo refers to as her aunt) and, frankly, if she and her aunt didn't have each other, they'd both be in therapy.

Still, whenever there's something up with my mom, I have my sister. Thankfully, there hasn't been much up with my mom, knock on wood, but I know that I could rely on my sister if something did happen, and we would be there for each other.

I know that although society has become more welcoming of people with DS than it used to be, there will still be plenty of less-than-rosy moments for T as a sibling to a person with DS. I'm guessing that there will be many times when T locks himself into his room, by himself, and thinks "why do I have to have a retard for a brother?" while staring at the ceiling. Hopefully these will be balanced out by pride in his little brother's accomplishments and a simple, heart-filling brotherly love. On a far different plane, he may be in a position later in life when he has to make decisions about or for his brother, such as medical care or finances, which he may not resent, but which may weigh heavily on him nonetheless. It just seems to me that it would be a relief to him to be able to pick up the phone and call his little brother or sister and just share with another person who is equally emotionally invested in the situation.

Two things I have concluded this urge is definitely NOT about:

1. The urge to have two "normal" children, as if E is a reject. Not.
2. The urge to be pregnant and give birth again. Pregnancy is not as thrilling when you have other children to chase, and I'm over trying to have my VBAC.

Another thing I know: there's no guarantee that my third kid wouldn't be disabled themselves, that they wouldn't end up in jail, or that they wouldn't hate their siblings and go off forever, never to be heard from again. However, on the second and third points, I can hope that a solid upbringing and lots of love would help them avoid such an adulthood. And as to the third, well, there's no guarantee about anything, is there? - we might all be in a car crash tomorrow, T might try skydiving and his parachute might not open, or E might die before all of us. So in my brain I've pushed the maybes and mights aside and just considered the situation assuming that we're all going to continue living our lives.

Considering adoption? I have. I have also seen how much it costs. While Jo was stuck with me, the pregnant grouch, for 9 months, I have to admit: the only part about having E that we had to pay for was the sperm. That has to be taken into consideration as well as the zero-population-growth thing.

So there you have it. Two out of three resolutions tended to. I am sure more thinking about this three kid thing will take place.

recent thoughts

Some random thoughts on the Down syndrome front:

First, a lovely thought from an exchange with an online friend of mine:

"I was talking to one of my very progressive thinking friends who told me that the rate of DS per population has increased significantly in the past several decades, and his idea was that with all of the ugliness in the world, God is trying to balance it out by adding more people with inherent beauty and grace, who cannot possibly add to the devastation and horror that those of us without disabilities do on a regular basis (war and pollution and corruption etc).

"It was a theory that I do not have any trouble tucking inside my folder of joyous thoughts."

Indeed.

Secondly, this random notion came to me after our doctor said that E will probably always be a sleepier guy - not necessarily droopy during waking hours, but more ready and willing to take a nap and a better sleeper at night (which is already proving true): more time spent communing with the angels and recharging his soul batteries for the harsh reality that is life on this earth?

Thirdly, I'm reading the book Expecting Adam by Martha Beck. It was both recommended to me by Sara and sent to us as a gift by Jo's aunt. The writing and sense of humor of the author makes me laugh out loud, and I can relate to much in the book, also coming from a family where a great deal of emphasis is put on academic and intellectual achievement. At least that's how it has felt to me over the course of my life thus far. That being said, I also come from a family that has always used people first language and has always had a kind, accepting spot for those who are differently abled. Both parents worked with kids with special needs, my dad taught them. I often wonder how my dad would be reacting right now to having a grandson with Down syndrome. (Heidi, what do you think?)

Fourthly, now that a month has passed I find that I don't even see the physical DS characteristics my son has anymore. I was examining him tonight while he was falling asleep (examining, hm, sounds like a doctor... perhaps I should say "gazing admiringly" at him) and noticing that his mouth looks exactly like mine. And, as his Tante Heidi pointed out to him over the holidays, he's got that family nose.

Lastly, am I just surrounded by cool people who say the right things? I got an e-mail from my friend's dad today - he has to be in his late 60s or early 70s - telling me about a 50something-year-old neighbor of theirs who has DS and what a nice guy he is. Everywhere I look, someone knows someone with DS and has good things to say. I know that it simply cannot be true that every person with DS in the world is goodness and light, but everyone I know seems to have more favorable impressions than not.

Tomorrow I have a barrage of appointments to make (pediatric ophthalmologist for routine screening, ENT for hearing check-up because he only passed on one ear before leaving the hospital, which is normal for many babies and could be for a variety of reasons including wax or vernix in the ear right after birth, and pediatric cardiologist for a follow-up echocardiogram just to make sure that tiny newborn murmur - also standard for lots of children with and without DS - has gone away). Good fun. Let's hope we'll do better getting appointments with these folks than we did with trying to get a preliminary appointment with our local DS clinics, one of which has closed for good and one that refuses to return phone calls. Harumph.

happy new year

resolutions for 2009:

• update blogroll.
  
  
• give lactation another chance - go back to herb regimen and pumping minimum of 3 times a day for 2 weeks. If I still resent it, give it up with no guilty feelings. Try to remember that it's so good for my little guy that I could almost consider it medicine.
  
  
• process alarming, overwhelmingly strong desire for a third child and go in the appropriate direction with it.
  
  
• take a deep breath when I want to yell at my four-year-old. In the same vein, raise my voice less so that when I do, it means something.

A very happy new year to you all. Thank you for reading my words.

The Pogues and Kirsty MacColl - Fairytale of New York

Since this has been stuck in my head for the past few days to the point of keeping me from falling asleep, I thought I'd share the love.

Happy Christmas!