Monthly Archives: April 2008

Autism Awareness Month: Over n’ Out

Well, Autism Awareness Month has come to a close.  In the end, I opted out of writing posts that were specifically about autism this month, because instead I found that I was thinking more about what is, for me, at the heart of the matter: acceptance.  Acceptance of each and every beautiful child, no matter what.  You can read what I had to say on this topic here and here, if you missed the posts.

I was asked this month to write a piece for Trusera.com, a social networking website that focuses on health and wellness.  The topic was, “What is one thing you want people to know about autism?”  I will share it with you tonight, as we say goodbye to Autism Awareness Month:

“If there is one thing you should know about people with autism spectrum disorders, it is that autism is not one thing.

Just like any other two people you would meet, no two people on the spectrum are the same.  It is referred to as a “spectrum” disorder for a reason: the possible combinations of strengths and challenges are endless.  Knowing one child (or adult) with a spectrum disorder does not prepare us to work with (or parent) another.  Each person must be respected as an individual with his or her own unique sensory profile as well as motor and communication strengths and needs.

If we begin with the assumption that autism is not one thing, it stands to reason that there is no one-size-fits-all treatment method.   Although this is often cited as a complaint – “Which is the best methodology to use with my child?” – I believe it’s beneficial that there are many options for families.  Some children flourish with Floortime, while others do well to start out with a more structured approach like a contemporary ABA program in conjunction with some less structured playtime.  Some families are able to embrace Relationship Development Intervention (RDI), while others are better suited to a more therapist-directed program.  Some have benefitted greatly from use of the SCERTS curriculum in their school programs.  Furthermore, despite what Jenny McCarthy is preaching, not all children on the spectrum show a dramatic change in behavior with biomedical interventions; but some do.

I have no doubt that in the years to come, we will learn to characterize autism spectrum disorders differently, to better capture the different types of autism we see.  But even then, I have no doubt that this statement will ring true: there is no one autism.”

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Meme’d

I was tagged over at Rooster Calls for this meme.  It appears to be simple enough, even for me:

5 things found in your bag:

1. Parking ticket (damn that broken meter)

2. Miniature Time Timer

3. Empty container of Tic Tacs

4. Lego heart from Lyle

5. Envelope full of deposits to be dropped at the bank

5 favorite things in your room:

1. 4 Framed photos of each of us with each of the boys

2. Bold orange and white duvet cover

3. Tissue paper and pipe cleaner flowers Baxter made in preschool one Mother’s Day

4. Pile of books to be read next to my bed

5. My great-grandmother’s engagement ring

5 things you have always wanted to do:

1. Be able to take naps (when not pregnant).

2. Sleep past 6:15 when I don’t have to get up for anything.

3. Work out every day.

4. Own a Vespa.  In pink.

5. Make out with Barry Manilow.  JUST KIDDING.

5 things you are currently into:

1. Eating right

2. Jack Johnson

3.  Slowing down

4. Benefit cosmetics

5. Redecorating our dining room

5 people you’d like to tag:

1.  The Lady Squabina at The Snarky Squab

2. Emily at A Life Less Ordinary?

3. Libby at A Study of Schoolbooks and Shoes

4. Kirsten at MomEgo

5. Cassie at Cute and Evil

Materialistic Monday: Erase Paste

It’s been one hell of a day.  Challenging sessions here at work, pouring rain outside, and trying to figure out if and when I should fly back to Massachusetts to stay with my grandmother, because my grandfather had a stroke last week, is in the hospital, and is likely to head to a rehab facility soon.  I’m not too keen on the idea of my nearly-blind grandmother (who never asks for help) getting around by herself in the senior housing apartment that they’ve only lived in for a matter of weeks.  I should go, right?

But, Wonderfriends, here’s what is getting me through this day – my skin looks damn good.  And I’ll tell you why: Benefit’s Erase Paste.  Dab a little under the eyes, on the eyelids, and anywhere you are sporting a little blemish or discoloration:  poof!   They don’t lie when they say that it conceals and brightens – it actually does.  Even Matt is totally impressed with this product, and that’s saying something.

Now if only I had some Erase Paste for all the bigger stuff in my life…

Internet Highlights

Here are a few odds & ends I want to share with you all.

1.  My sister-in-law just informed us that it is possible to opt out of those godforsaken credit card offers!  Between Matt, me, and my business, we get a ridiculous number of these each week – usually multiple offers a day.  Talk about a waste of paper.  As a belated gift to the planet, consider following this link to opt out of the atrocious things.  My sister-in-law saw credit card offers completely stop coming within a few weeks, while her husband (who had not yet filled out the online form) continued to receive them by the metric ton.  And by the way, she did not give them her social security number and it still worked.  I just did this and it took all of 2 minutes.  Go!  Do it!  Be free!

2.  I may be late to this game, but I’m a super fan.  Have you visited the new Free Range Kids blog?  It was recently created by Lenore Skenazy, the New York columnist who allowed her mature, city-smart 9-year old to ride the subway home from Bloomingdale’s through a tony part of Manhattan on his own.  Oh, my, the stir this has caused!

In my opinion, the noisy parenting split that has ensued is indicative of what a superb job the media has done in making us feel that the world is Far Less Safe today than it was when we were kids.  I would argue that we know more now, in this age of published names of juvenile sex offenders (which I refuse to read) and national news coverage of each and every bit of Bad News Relating to Children (which I refuse to watch or read).  It’s not about putting one’s head in the sand: it’s about trying to sort out the news from the sensation.

Beyond the huge debate that’s raging over Ms. Skenazy’s decision to let her son find his way home on his own (and not to be totally glib here – oops! too late! – but if my son had hair like this, I think I’d let him do whatever he damn well pleased!), there’s some other great stuff on her blog. I highly recommend this one about the bacteria in snow potentially hurting our “plant children”. I’m in love, I tell you.  This woman is a breath of fresh air, if you ask me.  (Which you didn’t, but since you came here of your own volition, we’ll pretend that you did.)

The Big Question

I knelt in front of him to zip up his windbreaker and, as always, Lyle immediately dove straight into my arms, face buried in my neck with his great bear hug.   But this time the hug was accompanied by a question.  A big one.

“Mommy?” he said, speaking directly into my hair.  “When will our days be all done?”

Assuming he had accidentally added the plural “s” to day due to some serious nap-refusing fatigue, I grinned and said, “The day will be done tonight, Sweetie, after dinner, when you’re in your pajamas and get into bed.  That will be the end of the day. I know you’re tired and would like it to be the end of the day soon.”

But he pulled away from me just enough that his big brown eyes were mere inches from my own and I could see that I had gotten it wrong.  “No, Mommy.  All of our days.  When will all of our days be all done?” and then buried his face back into my neck and began to cry.

In the moment, all I could think to say was, “We’ll have as many days together as we need, Lyle. As many as we need,” as I continued to hold him close.

I still don’t know what he meant for sure, but as the afternoon and evening wore on I picked through my memories of recent conversations around the house; most of them were with Baxter, but Lyle had been present.  Jokes with Baxter about how he’ll someday dream of moving out on his own because I’ll drive him nuts (which he cannot believe right now, the sweet boy) and be ready to go his own way.  Conversations about the year after next, when Lyle will go to kindergarten and be in school with Baxter.  It would not surprise me to learn that my 3-year old has heard those things and felt some pangs of separation anxiety, and so I checked in on those topics today and made sure he understood that he’d be with us just as long as he needed to be.

But I think today’s tearful exchange was about death.  My first thought was, “No, he’s too young for that,” but then I recalled that Baxter was deep into the topic of death at the time of Lyle’s birth,  and had been peppering us with questions on the subject for a couple months prior to that.  (I recall vividly sitting on the sofa breast-feeding newborn Lyle, Baxter perched on the chair across from me, leaning forward and asking with intensity, “When are you and Daddy going to die, Mommy?”)  That places his initial awareness at Lyle’s current age, 3 years 8 months.

It’s an important developmental stage, I know that, but I absolutely dread going through it again. Seeing my own mortality through my child’s eyes, and not having any real guarantee for him that I’ll be around as long as he and I would both wish is depressing to me.  I have felt really sad ever since this conversation.

“When will all of our days be done, Mommy?”

I wish I knew how to even begin to answer that.

I’m a Credit to My Race

Since you already know that

a) I am Caucasian

and

b) I am SUCH a dork,

then you know the only two things necessary to identify me in the photo below:

 

Nursery School

Hartford, Connecticut

1975

I. Am. So. Proud.

On Faith

I have held onto this post for over a month now, waiting to be sure that the Wonderfriends who know the family I write about here have heard the news I share below.  I’ve chosen this week to publish it because it turns out to be a companion piece of sorts to last week’s “Road Map to Holland” book review.

 *******

Matt and I recently participated in a 6-week class called Parents as Spiritual Guides at our UU church. I had to miss a few of the sessions due to my jet-setting-mama ways in February, and I was truly sorry about that because it was an excellent class.

One week we were asked to think about “faith” – what it means to us, how we keep it alive, and whether it has ever failed us. When you ask a group of UU folks to talk about faith, an interesting conversation is bound to ensue. Faith, to some of us, is a loaded word: one that many of us have negative associations with. Some UU parents have no religious background at all, and some who were a part of other faiths left because something about it did not sit well with us.  And so all of us have come together, looking for an inclusive, supportive, liberal spiritual community within which we could comfortably raise children. When it came down to it, many of us couldn’t say what faith means to us, and have avoided the topic for a lifetime.

I was grateful to have that session on faith, because it was an opportunity to listen to others and in turn begin to articulate my own thoughts more coherently. A question posed by one of our classmates helped me to zero in on what faith means to me. She essentially asked how we rationalize the really awful things that happen in the world, and in our lives, as people who claim to have faith. Thinking about it from that angle helped me to put into words my feelings on this subject for the first time. It’s a work in progress, but I’d like to share it.

I have faith in the innate goodness in the world. I have faith – a belief or hope that I act upon – that my actions, such as raising my children thoughtfully and intentionally; being kind and generous to friends, neighbors, and strangers; the blood, sweat and tears I put into my work – will make a positive difference in the world. I have seen that, thanks to this attitude, good things come back to me as well in the form of loving and supportive communities, and I have faith that this will continue throughout my life.

I don’t have blind faith.  I don’t believe that everything will work out because God or The Universe or anything else will make it so. I think sometimes life will really stink. Big time. It will be unfair – there will be war and cancer and poverty and AIDS and loved ones dying. Bad things will happen to good people. And I don’t have Someone or Something to blame this on.

Matt and I have wonderful friends who, after waiting a long time to conceive, became pregnant last year. We were all thrilled that these amazing individuals who work with and love children would become parents, and we held our collective breath as the pregnancy proved to be viable, lasting, and healthy. The pregnancy had its challenges, but some weeks ago, a gorgeous baby boy was born. I found that I had still been holding my breath for these friends, but as I cried happily over the pictures of this little guy, I was able to relax and celebrate.

Just a couple of days after he was born, Matt received a phone call from the baby’s father, who is a childhood friend of Matt’s. He asked Matt to be the baby’s Godfather (and noted that they were thinking of the four of us as sort of an extended “Godfamily” to their son). Matt was, of course, exceedingly pleased, and accepted this special role in the baby’s life immediately.

But then the baby’s father shared something else. They had just found out that the beautiful baby has Cystic Fibrosis.

Here is where one’s faith in the goodness of the world gets tested. We are grieving for a child who is alive and well, knowing that his life – and his parents’ lives – won’t be exactly what they and we had imagined. He may get pneumonia a couple of times as a baby and there will be on-going medical interventions required to keep him healthy.  A child’s experience with this disease can vary quite a bit. I am able to picture this child growing up, going to school, having friends, playing sports, and going off to whatever college he wants because he’ll be that smart, believe me.  But it’s overwhelming, the grieving that happens when a child is born whose path isn’t what we all expected, whose parents got off the plane only to discover that they were in Holland rather than Italy.  Their tickets were switched.

There are those who say, “Everything happens for a reason”. My universe doesn’t work that way. I don’t believe this baby has Cystic Fibrosis for some kind of cosmic reason, other than the fact that both of his parents turned out to be carriers and the odds worked against him.

I prefer to turn that platitude on its head and say, “You can find reason in everything.

The bad stuff? It exists and it stinks. This sweet baby having a serious illness? It’s awful. I don’t want it. If I could take it away from him I would – in a heartbeat. But where my personal faith kicks in here is in my attitude that the beautiful, sweet baby who happens to have Cystic Fibrosis will change the world. People will learn more about themselves from having him in their lives and watching him grow and change. He will bring joy and amazement every time he overcomes an obstacle. His parents will know fear, yes, but also bravery that at one time may have seemed unattainable. His very existence has already opened all of our hearts and minds to hope and limitless possibility, which will reach far beyond our interactions with him and his parents to impact a great many other people.

And that’s what I mean. I don’t think there is a reason for it, but I can find reason in it – reason to hope, to believe, and yes, to have faith.

A whole lot of faith.

(Note: If you would like to make a donation to the Cystic Fibrosis Foundation, you can do so here.)

And the Winner is…

There was a boy:

 

 

Names in a hat:

 

And a winner!

 

 

Christine, email me your address at jordan.s.sadler@gmail.com and then watch the mail for your copy of Jennifer Graf Groneberg’s Road Map to Holland!

Congratulations!

(Now the rest of you?  Go buy it!)

Materialistic Monday: In Which I Assimilate

“Well, that’s it, then,” he said.  “You’re fully assimilated now.”

I looked at Matt.  Then I looked back at the 9-piece Pyrex Portables set I had just brought home from Target.  I laughed and said,  “You’re right.”

When I was purchasing this fantastic creation, I was thinking, “So this is what happens when you join a church. It’s one of the hidden costs no one tells you about.  You end up buying a crazy contraption like this!”

I’ve always made meals for friends when their babies were born, but in the past few years the births have slowed down among my friends and my give-away cooking for has decreased.  Joining our church, however, has driven the rate right back up.  I agreed at some point to be on a list of people willing to bring meals to members who are ill or newly home with babies or recovering from hospitalization.  It’s not a constant request – there must be enough of us on that list of willing parties – but we have cooked and delivered meals quite a few times this year.  We are also transporting lots more meals to family events than ever before, living near Matt’s family.

More than once I’ve pulled a hot casserole out of the oven at 5 pm only to hand the glass dish to Matt to take out into below zero temperatures to deliver across town.   But recently I discovered a good solution – the Pyrex Portables line.  I just bought one and I have to say, it’s a design wonder.  The nice padded insulated carry bag with comfy handles contains a double-decker storage area.  One level can hold two side-by-side 6 cup rectangular dishes with snap tops (perfect for side dishes), and the other a large covered 9×13 dish.  There are two large hot/cold packs as well.  I’m in heaven!

I was feeling pretty Midwestern when we started going to church in the first place. (San Francisco is one of the cities with the least number of people attending church in the nation – I believe that (only?) Seattle has it beat.) Delivering food to people we’d never met – even more so.  But buying a special insulated bag to deliver the food in any weather?   Well, Matt’s right, I think.

The assimilation is complete.

There’s Still Time

Reminder!   Leave a comment after my “Book Review: Road Map to Holland” post and I will enter you in the drawing for a free copy of the book!  The drawing will take place after work so I’ll accept comments until 5 pm tomorrow.  Good luck!