The Key to Survival

In past posts I've talked about my fantasy of communal living for families who have kids with disabilities. The happenings at L'Arche are always on my radar. I also found Noah's Ark in Florida during one of my web surfs.

Both have a lot to offer. The problem is that they are for adults with disabilities who live away from home. My real interest is in a place that is created for parents and kids to live together in a community of like-minded people. Hence the commune image that won't leave my mind.

When Daniel's big sister was a baby, I got involved with the Waldorf education program in my city. I hung out with a group of moms who were part of the original initiative to get a school started here. I loved it.

Waldorf living means (in part) no television, specific types of toys that emphasize natural materials, and a focus on play for the young child rather than academics. It's tough to live in the real world and maintain such a strict lifestyle, but worth it if you can manage.

I incorporated some of the ideas I learned in my Waldorf days while Melody was a toddler, but it gradually went by the wayside and my kid watched Disney movies and played with Barbies like everyone else in the neighborhood. I didn't have the commitment it took to carry it out, and her father was not really enthusiastic about wooden toys and the absence of cartoons. (Still, until just a few months ago, Daniel slept on the lambs wool that I bought from one of their catalogs, and our kinder harp is in the living room next to the piano.)

Anyhow, 16 years later I discovered that Waldorf has a program for kids with disabilities. The one that intrigues me the most is this one. The downside to the program is that it's a residential school, not an intentional community that would include families. I like what they're doing, though.

I guess my vision is of a L'Arche/Noah's Ark/Camphill School that is made for families. One of the hardest parts of raising a child with multiple disabilities and unique medical needs is finding good help so that it's not all on a parent's shoulders. The best times for my family are the ones when my mom and dad are with us. We share the work. We enjoy Daniel without getting burned out or boring him. It's because we are doing it as a team, and everyone is fully invested. (And we love him more than life itself).

My dream is to lessen the fear of "what happens when I die" by finding or creating a place that eliminates the isolation that exists in our separate houses with our friends and family spread out over the map. For me, sending Daniel to live elsewhere is unthinkable. I understand that it's necessary for some parents, and I appreciate the agony involved in making the decision.

How beautiful it would be to live our days enjoying our kids with the support that assisted living gives. Forget about agencies and paid care providers. I want people around me who are in Daniel's life not for the money, but for the relationship.

Idealistic? Probably. But I really do think it's key. Right now I don't know where to start to make this dream real other than by giving it lots of time to incubate. Oh, and put it out there so that any of you reading who share these thoughts and want the same things can add your .02.

What I pray for

Would I change him? I would and do provide him with the things that help him in this life, such as the medications that manage his seizures. I don't want him to suffer, but I have very limited control over that for anyone. I can only do what I can do.

I try new techniques to help him express himself and communicate. I advocate for services and connect with people who have something to teach and share that might help me be the parent he needs me to be.

I may be wrong, I have been often, but my philosophy is that he came into the earth with a mission. I was raised by parents who embraced the Edgar Cayce readings, and so my mind is of the persuasion that every soul is eternal and here with a purpose.

So, no, I'd have to say that changing Daniel is not something I fantasize about or wish for. My prayer for him is that he be surrounded by and experience happiness and love, contentment and joy. This morning we both seemed to be hitting the mark.

When They Were Small

These photos were taken sometime in 2000 at Rockome Gardens in Illinois. My kids are two of the best things to happen to me in my half-century here.

Completely Normal

The microarray test, that is.

So, from here, no more testing until we can look at the entire genome. The capability is there, but scientists/doctors are not able to interpret it yet. That's several years down the road. And, as the counselor pointed out this morning, Daniel's issues may not be genetic.

"We may never know what caused Daniel's specific difficulties," the counselor said. I was expecting this result and some form of that statement.

Completely normal. I'm gonna go drink coffee and ponder that.

Still Wondering

I called the genetics office today to see if Daniel's results from the microarray are in. I was put on hold four times (and man, is the elevator music loud on their system) and finally the secretary talked to me.

"I can see that the results are in, but the counselor isn't available to talk to you right now. She'll have to get back with you."

"Will that be tonight or tomorrow? Because if it showed something, I REALLY want to know as soon as possible." Hell, it's only been thirteen years.

"Ok, she's in clinic for the rest of the day, but I'll send her a message and let her know that you're anxious for the results."


Since it's after six, she must be waiting to contact me. At least I'm off tomorrow and can start calling them myself bright and early. I don't want to wait until Monday, and I know how to be a nudge.

What I wouldn't give...

This video is pretty amazing.

Daniel's on the couch with his iPad keyboard right now!

Change

I'm enjoying Elizabeth's post this morning, and the song she shared is playing as I write.

My last post was about changing some things in myself. I used to be much more open. Somewhere along the way I started editing myself. I don't want to offend people, and I want to fit in and be liked. So alot of times I leave out parts of my story that I think might sound too weird, New Agey or out of the mainstream. I don't usually get into politics. I'm vocal at home, and with people who I know won't challenge me. That's pretty chicken shit.

I admire the outspoken. I was listening to the radio on the way to work the other morning and the DJ's were talking about some celebrities who identified publicly with a political party, and how they're doing themselves a disservice. "That's why you'll never know who we're voting for," the DJ ended with. It made me think. It's good to play it safe if you want to maintain popularity on the radio or in life. But it's the people who speak up that get our attention and really force us to figure out where we stand. And it's how true allies and friendships are formed.

I'll start with one thing. I believe that we are eternal, and that we have some choice regarding the life we enter and the people whose lives we'll be involved with.

Before Daniel was conceived I was working on a book proposal. ARE Press published my book 'Walking the Spiritual Walk' in 1994, and I wanted to follow it up with one about conscious conception and preparation for parenthood. One of the chapters I researched was the idea of conception mandalas. I read about them, and then made my own.

I read these books while I prepared the sample chapters and tried to live what I was writing.

The proposal was being considered by a publisher, and I had people on board to add their support on the back cover. Then Daniel was born and there was no time to write. I figured I'd come back to it later.

My first book was largely about my marriage to Daniel's dad, and when that didn't work out, I really lost faith. I questioned many of the things I thought I'd figured out. I felt very much like a failure. It shook my foundation, for sure.

I found out that life isn't as simple as I once imagined it to be. It's not neat. It's messy. It hurts. But if we aren't honest about our mistakes, our flaws and our Truths, we are stuck.

Here's to the Martin Luther King Jr.'s of the world, and all those who aren't afraid to speak their truth.

Blue Monday

I wasn't at work very long this morning when I got one of the calls I don't like. It was Rich on the phone telling me Daniel was in the middle of a big seizure. His care provider was also still there, and this is the first time she's seen him seize.

I told Rich where the Diastat was (they already knew, but in times like these it's good to have the emergency response mom on the phone giving directions). I was talking to him while Rita gave it, and listened while he described the shaking and unresponsiveness.

My principal was at my door needing someone to help with a parent whose kid has ringworm. I got off the phone and talked to her and let the parent know what to do. Then I called my most wonderful boss, a nurse who cared for her autistic sister for many years. She found a float nurse to replace me right away.

In between calling a parent whose kid just vomited, and giving a few routine meds, I touched base with Rich to make sure Daniel was alright. He was sleeping in Rita's arms.

Within an hour of Daniel's seizure, I was back home. He's crying a little off and on and resting. He doesn't have a fever or any other signs of illness, so I'm pretty sure he may have lost some Topamax at some point (he likes to spit it out, and I'm not always super-diligent about checking his mouth after he takes it).

He's lying beside me now and seems pretty calm. I'll give some extra Topamax today and hope that this is the last of the Big Shakes for a long time.

I'm lucky I have an understanding boss, a great care provider and a husband who knows what to do. Still, I'm gonna eat a crispy English muffin with lots of jelly and wallow a little. It is Monday, after all.

Just a Quickie

I found an app yesterday for Daniel's new iPad, and this morning he's already used it appropriately! It's called Tap to Talk and it has albums with large, colorful pictures that you touch lightly (aka tap) and a voice says what the picture represents. This is big.

Daniel just touched "I need to go to the bathroom", so that's where he is now, and I'm off in a few to bring him back for more coffee talk.

This is great! Thanks again, Ken and Heather!

Dreams

The blog that inspired me to jump on the blogging bandwagon (later than most) is written by Lesley. Here is her latest post.

I have similar feelings, fears and longings rolling about in my mind. I want a simple, happy, peaceful life. For Daniel. For myself and the people closest to us who love us and keep us going. Like Lesley, I don't dream about vacations or having a hot body with a wardrobe fit to kill. It's not that I'm "above" those things, whatever that means. It's just that I have this teenage boy in my life who shifts my perspective and helps me clarify what I really, really want as our experience.

Lesley says this, "I sense that this was all written on her pretty little soul the very first day she came into this world. And my challenge will be to handle it. To deal with it, to make sense of it and to support her in every possible way. Am I am fearful? Yes. It makes me anxious, yes. But mostly it makes me sad. And more determined than ever to make every day a good day for Sarah, as best as it can be. I live in the moment, because her future isn't looking too hot."

She writes that Sarah is losing some of her skills, and without a diagnosis, Lesley isn't sure what the future holds in terms of prognosis.

Because of Daniel I have so many people in my life who deal with uncertainty, with more unknowns than most parents. True, none of us knows what twists and turns our lives will take. Not many people plan on cancer or life altering accidents. But this ride is different. If you aren't on it, I can't really fully explain the experience. It's something you have to live.

I do know that having a community of friends who "get it" makes all the difference. I thank you all. I'm ready to do it again in this New Year, this circa 2012. Here's to it!

The River of Stones

Thanks to Elizabeth, I'm joining in on this

Here's mine:

Sitting alone in a quiet room, I feel the darkness and let it cover me. Soft footsteps down the hall. Peace.