Please Take Care of Yourselves

Please Take Care of Yourselves

Here are the rough notes from the Taking Care of Ourselves presentation hosted by SEPTAR (The Special Ed PTA of Redwood City, www.septar.org) on Thursday, April 10. Although geared specifically towards parents of special needs children, much of the material is appropriate for any overwhelmed parent.

TAKING CARE OF OURSELVES
Ilana Douglas, Licensed MFT (Marriage and Family Therapist)

Taking care of our needs and getting our needs met: in order for that to happen, we have to be able to see ourselves. Which is a very hard thing to do. Not just to see ourselves, but to ask others to see ourselves, too. That is also really hard to do. It's hard to have others pay attention and ask others to stop long enough to really see us as we are.

First thing she'd like us to do is say our names and tell us what we would do if we could wave a magic wand.
(Many, many different wishes expressed)

The wish for our children to be well is something we carry with ourselves all the time. It takes a lot of energy to be the one responsible for our fragile, vulnerable children. We feel like we have to be perfect because there's so little room for error. What will happen to our children if something happens to us? We are very, very vulnerable. We have ownership of "the entire list" and never get to stop to realize it. We go go go and never have time to look at ourselves, because everything on our undoable list is so important. And then when we miss one thing there's judgment inside of us, and from others.

How do we give ourselves a break from this mountain of items we'll never accomplish when the world is pushing down on us? What do we do with our resentment and anger, our exhaustion? How do we address it? We are so overwhelmed by the needs of everyone around us that we never give ourselves a break.

We try to be our children's user interface, and keep everything going for them.

Along with the needs that drive you are the values that motivate you. Values guide your life. It's easier to take a stand for something greater than yourself (Go on a march, make a donation, take care of your child) than to take care of your own need.

So how do we internally advocate to ourselves? What value relates to that advocacy? We know a lot about advocacy by advocating for our children. So how do we apply value to advocating for ourselves?

If you think of any organism in nature, a bug a tree, you'll realize that everything needs to be taken care of. A bug needs food. A tree needs water. They do not exist independently.

What value do we use to transcend our to-do list and take care of ourselves? We feel guilty if we take care of ourselves.

How do we advocate for respect from other people? How do we make time for ourselves in the course of a day to take a deep breath? the biggest obstacle to taking time for ourselves is: ourselves. Because we don't have a value that says "you are really special because you are doing that." Which is different than self-worth.

Our society doesn't value our efforts to take time for ourselves. Even if those ten minutes, five minutes to breathe can make all the difference. If we need that, we don't have the fortitude, we're not strong enough. Our kids deserve all our time, not us. We are not as good parents if we take time for ourselves, and want to be paid for what we do. Our culture thinks that mothers are here on this earth to be used. (One parent calls us "the human napkins.") There is incredible pressure applied on mothers, let alone the mothers of special needs children, let alone single mothers.

The biggest obstacle that she sees is taking time for ourselves every day, which is really what we need -- just fifteen minutes. Stop. breathe. Do whatever you need. Find that peace inside.

Say that you have two young children with special needs and you need a break. You say: I need to figure out what to do for myself. So you go online for advice. The advice you read says: “Go to yoga. Go get your nails done. Listen to music. Light a candle.” But this doesn't work for you. So what do you do?

She wants to take us through a process. Relaxation techniques can take less than five minutes. [Here are some similar exercises to those she demonstrated:
http://www.helpguide.org/mental/stress_relief_meditation_yoga_relaxation.htm]

What do we do if our children don't stop pestering us, ever? What can we do to get our kids to give us five minutes alone? Don't be afraid to bribe your kids for those five minutes! Don't be afraid to hide in the bathroom! It's very hard to fit this time in when we need it most.

It is important to develop friends who will support you in being able to identify and value this place of peace.

She would like to wrap up with something else:

"Yes and no are very important. But the most important phrase is ‘wait a minute.’ It's the spaces between the activities where life happens."

It is only from inner peace that we find the power to have a fulfilling life. This is separate and parallel to the grieving process.

What if our child doesn't have milestones? We have to divorce ourselves from the external judgment.

Remember that "What if" can be a way to escape from “What is.”

Ilana concluded with the following passage:

What You Should Know About My Child
(by Marie Bristol [possibly. My five-minute internet search to determine authorship was not fruitful])

Remember that he is, first of all, my child. Let me see him smiling in his sleep and let me think about how handsome he is and not about how delayed that smile was in coming.

Help me not lose sight of my son in the shadow of his limitations. I know that you care for my child and that you work hard with him. I need your expertise to help him become all that he is capable of being.

You need my help in understanding who he really is and in following through at home with things that are important.

Remember, though, that you send him home at night and have weekends off and paid vacations. Let me have the luxury of having a vacation, sometimes physically, sometimes just emotionally, for a day, a week, a month, without your judging me.

I will be there for him when you are long gone. I love my child with an intensity that you can only imagine.

If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me.

Celebrate with me, rejoice in who he is and who he will become but forgive me if from time to time I shed a tear for who he might have been.

Beyond the Sea

Beyond the Sea

Leelo's entire segregated K-1 moderate-to-severe behavioral autism class is going to the beach today. His teacher assured me that he will have the same vigilant 1:1 supervision on this field trip that he does in class. I assured her that he will make a break for the water any chance he gets, and to make sure that he has an aide who can haul ass if need be.

Can't wait to hear how it goes.

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Update: Total success! Leelo's teacher wrote in his communication log that my son had a good time at the beach. He liked walking on the sand. He enjoyed splashing in the water. He was very cooperative and didn't hit anyone. He even was able to wait quietly for his turn to use a public bathroom afterwards, and had no toilet accidents for the first school day in over two weeks. I hope this bodes well for the weekend. Go Leelo!

Technorati Tags: autism, autism blog, autistic

Battlestar Bwahaha

Battlestar Bwahaha

Can I Sit With You? Seattle in Less Than Two Weeks

Can I Sit With You? Seattle in Less Than Two Weeks

Seriously, everyone: the show is in less than two weeks! If you're thinking of going, please buy your tickets now as space is limited. And please also spam your friends about the event.

http://www.brownpapertickets.com/event/30612

Also very exciting news: Sarah Dopp is going to be the final reader at the show. Now you really shouldn't be able to resist.

Finally, a new story is up on Can I Sit With You. It is about bullying, is titled Dodging Bullet, and gave me the shivers.

Absence Makes the Heart Skip Several Beats

Leelo had a petit mal seizure-type episode right in front of me and his speech therapist Sage. I yelled his name and snapped my fingers in front of his eyes for several beats, and he just stared straight ahead at nothing until suddenly he was back as though the episode never happened.

Chatted with Dr. Sheyenne, his neurologist. Leelo gets another EEG! YEAH!

Leelo has also been having pee accidents all week. I took him to the doctor, who said he had no bladder infection though he might have constipation. Then again, both Supervisor M and I think Leelo might be having headaches/migraines. Leelo hasn't had wet pants for months. Seymour and I suspect that the accidents may have behavioral bases as well. We are upping the reinforcements and party potty atmosphere for successes.

Dr. Sheyenne thinks the absence episode and headaches might be related. We may see a pattern on the EEG that can tell us where the symptoms are coming from. Or we might get another "Oh, yeah, that's a fairly typical pattern for seizures *or* autism. Do you want some meds?" Sigh.

----

In other, less exciting news, I am sad about the way I and several other people are being treated by the moderator of a special needs parenting e-group. Said moderator is a rigid thinker who has created and vigorously enforces a set of rules for posting content on the two group lists. People who break the rules, innocently or with the very best intentions (e.g., making sure that announcements about community support events reach as many people as possible) get very rudely reprimanded and punished (warned, moderated, or kicked out). No matter that the people posting messages are actively providing real help and support, which is the entire reason the group exists.

I do not like being spoken to like a naughty child.

I do not like being told that rules created and enforced by one self-appointed gatekeeper are more important than the welfare of several hundred vulnerable, stressed, isolated parents.

I do not like being accused of grubbing for publicity and fomenting a conspiracy by telling people that the Special Ed PTA to which I dedicate my very precious free time provides services and babysitting for them, for free, even if they don't live in our school district.

I do think that there should be special itchy underwear for people who cut off access to information because Ur Doing it Wrong.

I can't think of any way to resolve the situation, which makes me crazy.

I don't want to disrupt the community; many of the members are tiny tiny kittens holding onto the tiniest tiniest branches. Very fragile, very much needing the support the community provides. The very saddest part is that the moderator is one of those kittens, too.

Our Apples, Our Trees

Our Apples, Our Trees

Sometimes you meet a child with autism, and you think how different they are from your child with autism. And then you meet or talk with that other child's parent, and you think oh honey, your child's autism, it may be a mystery to you, but it is not so much a mystery to me and here is a mirror for you and by the way, it's okay to stim like that if it makes you feel better.

My friends and I, we see so much of ourselves reflected in our children. They are quirky. We are quirky. How wonderful that we all have each other, that we have our community with which to celebrate and commiserate about all those quirks. How desperately we need each other, online and IRL.

Technorati Tags: autism, autism blog, autistic, special needs kids, special needs parenting

Squid News

Squid News

This video report on the Humboldt squid now percolates through my nightmares. Beaks! Huge parrot-like beaks!

I told my mom about the Humboldt squid invasion. She proceeded to tell me that she'd heard some of them even jump onto boats and attack people.

Me: "Mom, do you remember when I was little and I used to be too scared to go to bed because I thought giant squids would get me?"

Mom: "I thought you were afraid of giant earwigs?"

Me: "Yes, and giant squid, too. And the way I feel hasn't really changed."

Mom: "Oh. Well, tell Seymour that they did a really great job on that report."

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In other squid news, check out this sexy, retro-2004 link: www.squidalicious.com

Technorati Tags: squid

Good Manners

Good Manners

Leelo and Mali and I were shopping for groceries at The Hole. I was at the counter refilling the caffeine tank while Mali squalled about something (probably "I am NOT contrarious!" or "I WISH I had a cookie right now") and didn't notice Leelo slip off to the free tiny cups of water cooler.

After a beat I realized my son was not beside me, and turned around to see him getting a cup of water from a Hole worker. "He asked me for water so nicely!" she said. "Your son is so polite!"

Oh yes, he can be. He can be. Sweet and clever and handsome, too. This has been a particularly good week for Leelo's language, self-control, and affection. I am proud, but more importantly, I can tell that he is proud, too.

I was telling Leelo's fabulous new QA supervisor, EAP, about the water incident. She laughed, and told me that she can't believe the shit supposedly typical kids get away with in public. She said that none of the kids she works with would *ever* attempt the hijinks of their typical peers. So there's something to be said for hundreds and hundreds of hours of one-on-one social skills tutoring.

Technorati Tags: ABA therapy, autism, autism blog, autistic, manners

Call for Submissions: My Baby Rides the Short Bus

Call for Submissions: My Baby Rides the Short Bus

I am guessing that some of you have a few stories you could share:

http://www.shortbusbook.blogspot.com/

About this project:

As parents of differently-abled/special needs children we are often put on pedestals. People wonder in awe about how we cope, or tell us platitudes about how we have landed in a different but wonderful country, and we need to dream new dreams for our special angel children. But when we’re our in public, our ‘special angel children’ are most often stared at and treated like second class citizens. Our children are inconvenient, awkward, and difficult and it’s true that coping challenges us. But those who wonder how we do it are really just highlighting for themselves (and us) that they will never have to know. The truth is that our kids aren’t angels, they’re people with big challenges. And their challenges make our lives as parents incredibly complicated, messy, and sometimes heartbreaking, no matter how much we love them. As parents who are already marginalized by politics, sexual orientation, gender, race/ethnicity, parenting philosophy, our own disabilities, economic status, blue hair and piercings, or something else that makes us unlike the CNN-camera friendly special-needs family America knows and adores, it can be harder to find support among other parents or be taken seriously by the teachers, therapists, and other professionals we often have to rely on to get the services our kids need.

My Baby Rides the Short Bus will be an antidote to the saccharine laced anthologies that exist for special needs parents. It will give punk, alternative, and marginalized parents a place to write about their realities. Readers who have special needs kids themselves will feel like they’ve found honest voices and community, while others will have a better understanding, and hopefully respect, for us and our struggle.

I am not associated with this project in any way, but think it kicks ass.

(Thanks go to Badger for the link)

Technorati Tags: special needs kids, special needs parenting

This Is Not What Facebook Is For

This Is Not What Facebook Is For

My aunt just asked to be my friend on Facebook. I am thinking NO. A big NO to my mom's sister, much as I adore her. Because she and my mom are (as my uncle puts it) really just one brain with two mouths. I know it's probably very thirteen of me, but (cue petulance) I don't *want* to.

Technorati Tags: puppy

Sarah Dopp on Can I Sit With You?

Sarah Dopp on Can I Sit With You?

Our contest for Can I Sit With You? Seattle has opened, with a formidable entry: Sarah Dopp. Here's her story:

http://canisitwithyou.wordpress.com/2008/03/31/will-you-go-out-with-me/

While I know that going up against Sarah is not an undertaking for the weak-willed, we could use some more entries. I know that there must be rivers of Seattle-based writers with angsty school yard stories to tell, but I don't know how to find them.

So, I'm asking for help. If you, dear readers, could promote the contest and event on your blog, or if you could spam writey Seattle friends and associates about the contest/gig/show, I would be so very grateful, and will thank you personally right here on this page.

Here is the URL:

http://canisitwithyou.wordpress.com/2008/03/26/can-you-read-with-us-in-seattle/

Also, while thanks to Jennyalice we do have some online listings going on, this promotional endeavor thing is a bit new to us. I was going to post notices on upcoming.org and socializr.com as well, but would welcome recommendations for other ways to let people know about our amazing show and contest.

With thanks,

Squid