Mama Bear

What Matters

Mama bear — Thu, 19 Nov 2009 14:41:02 GMT

Long ago I realized that balancing my needs and wants -- especially as it applies to writing -- and my family's needs and wants is never quite as easy as hanging out a sign: "Mommy's Writing, Take a Number and Wait Your Turn," but despite the interruptions I did manage to sneak in a few thousand words here and there... until this November.

With one thing and another, my writing has taken a backseat.

My NaNo project has stalled out and been put on the side burner. Note I didnt' say the back burner -- where you take the pot off the heat and let it sit to cool and thicken before serving. My NaNo still has a flame under it; it still simmers gently, bubbling away quietly, and I stir it every so often with a jotted note here and there-- but getting a chunk of time to write coherently has been elusive.

I haven't even been able to post here very much, which should tell you how little I've been at the computer in the last three weeks.

These days I check email -- reply to the two or three I have to -- and peek at the headlines on Yahoo! before shutting the laptop down.

There were Girl Scout nuts to deal with, and fundraisers for Thomas's school, and substitutes at school, and Thomas getting kicked off the special ed bus (twice) and a whole host of other nibbly little bits of snaggage, but then a biggie hit, and everything faded to non-starters.

My mother in law (who is one of the most amazingly wonderful women on the planet) has just been told she has breast cancer.

I got the call Tuesday morning at work, right after she got the call from the Breast Cancer Clinic at Kaiser. They got the results from her biopsy -- a routine mammogram had resulted in another mammogram and an ultrasound and finally a small sample of the concerning area -- and she has cancer. They set up a meeting that afternoon to go over the big picture plan and she wanted me to go with her, to be her support, and to help gather all the information they were going to toss at us -- appointments with the sugeon, appointments to get an MRI (her cancer is in the lobe, so it doesn't show up on mammograms as well as they'd like) and then information about the surgery, which will be in 2-3 weeks. We are waiting on results from a tissue sample sent to another lab, to determine if this cancer is going to respond to estrogen and progesterone (for possible medications after this instance of cancer, to prevent possible recurrances/new instances) and trying to digest this sudden dumping into Breast Cancer Is Real And Staring Us In The Face.

The good news: My mother in law is healthy, active, and super positive. She is tenacious, supported, and determined. She caught this and it's getting dealt with...

NaNo can wait.

Posting here regularly can take a smallish break.

Heck, a ton of things are going to take a smallish break...

What's important has that tricky way of pushing all the other, lesser-important things to the side.

P.S. You may be hearing a lot of controversy about mammograms in the news... but please, please, please -- listen to your instincts, listen to your body.

Thanks

Mama bear — Fri, 16 Oct 2009 14:34:05 GMT

When I posted the news about my mother's terminal lung cancer I got such an outpouring of love and support from fellow PNN'ers...It truly took my breath away.

Thank you all for all the kind words and uplifting thoughts.

My relationship with my mother is not a Hallmark sort of thing, but most relationships aren't so rosy and shiny and glittery, are they? I still love her; the feelings are just complicated by past experiences and an attempt to protect my fragile sense of personal boundaries. I want her to be at peace, to not be afraid or lonely or overwhelmed by this experience... but I'm still struggling to determine what my role in that should be.

In talking with friends, family, and the combination here (smile) I realized there was a common thread to the advice people were giving me. The people who knew me, and who knew enough about this relationship to understand the complexities, were all saying I'd figure out the answer to my questions, and whatever that answer was, it'd be right.

Sounds simple, but it has hit me with a sense of the profound -- a wow moment if you will.

There is no easy answer.

There is no perfectly right answer.

There may not even BE an answer.

There IS, however, a sense of thankfulness that I have been able to connect again, however briefly, and that that connection meant something to my mother, too. And that thankfulness extends to the support network that surrounds me, which seems to expand like ripples in the pond each time I look up.

Thank you...

Gloomy News

Mama bear — Sun, 11 Oct 2009 20:27:28 GMT

I posted a few months ago about my mother being mentally ill and making choices that made it difficult to have a relationship with her... After years of riding an emotional roller coaster I chose to end contact with her rather than go into a tailspin, myself, and to protect my own growing family from the "crazies" that contact with her entailed. It was not done to punish her (although I realize it hurt her to lose me) and it was not done because I hate her or anything like that -- I actually do love her, I just can't be around her.

A year and a half ago my mom was diagnosed with lung cancer. She smokes heavily, and has done so since before I was born -- so over 40 years of daily carcinogens finally took hold. After the diagnosis she was told to quit smoking for two weeks before the surgeon would do surgery... five months later the doctors admitted her to the hospital to forcibly take her off cigarettes, because she couldn't do it on her own. She had half a lung removed, and as soon as she recovered from the surgery she took up smoking again.

(By the way-- I realize it's a powerful, horrible, terrible addiction, but let me just say that I hate smoking so much I can hardly even type these words. I hate the smell, I hate the second hand smoke, I hate the expense that often the poorest of people will shell out over other neccessities of life in order to get their fix, I hate the repercussions of the cancer stick. I HATE IT.)

My brother just came by yesterday to tell me that my mother is in the hospital, awaiting tests to see if she is a cantidate for chemotherapy for the cancer that is now throughout her OTHER lung -- the one complete lung that she has, which by the way, also has emphysema -- but because of the emphysema and half-removed other lung she probably WON'T be able to address this new cancer with drugs.

In other words, this is the beginning of the end.

Jason carefully put out the idea that it might be a good time for me to go see her, which has been gnawing at me all weekend. I agreed I'd go this afternoon -- Jason is going with me -- but it's not a pleasant outing by any stretch of the imagination.

There's no comfortable outcome of a visit to her; she will be uplifted by seeing me, but it will also stir up all those hurt feelings we both have over the six years of extremely limited contact. What can I say that won't be inflammatory? What can I say that won't break my contract with myself, to protect myself from being sucked into her black hole of need? Going to see her seems like a small thing, but it's already sapping my energy and I haven't even left the house... what is seeing her going to do to me?

I waffled over writing about this, and finally decided to go ahead and share... maybe putting it out there will give me some strength, or maybe just letting some of the thoughts go will release some of the stress. Either way, writing is how I deal with life... or death.

Nothing Short of Amazing

Mama bear — Mon, 28 Sep 2009 19:54:30 GMT

When you have a child who qualifies for special education, you get to attend meetings with a number of people, sometimes several times a year. These meetings are called IEPs, for Individualized Education Plans, and they spell out the accomodations your child will recieve through the school system. They can be tedious, intimidating, overwhelming -- or affirmations of joy and a shared sense of purpose.

At an IEP, goals are set in different areas -- academic, social, etc. -- and at the next meeting you go over each goal and determine if it was met. (An example: Thomas will create three sentence paragraphs with minimal help and modeling as observed and reported by teachers and staff by 3/10. When March of 2010 rolls around, papers Thomas has written in class are handed around and we read, "Mommy likes to eat popcorn. Daddy likes to eat popcorn. Megan likes to eat popcorn. I like popcorn." Goal met!)

When Thomas entered the school system, he was three, and it was only a few months after he was diagnosed with autism. He began attending a SDC (special day class) preschool that was geared toward meeting his educational, social and theraputic needs. There was a speech therapist who came twice a week to work with the kids; an occupational therapist -- which at first sounds like something to do with a work-related injury, but in fact means helping your child stablize their sensory input so that they can function in the world better -- who came once a week; and an adaptive P.E. teacher, who works with the kids and gets their motor skills up to par. As with a "regular" preschool, Thomas also painted and played with playdough and splashed in water tables, but the focus was on interacting with his peers and with adults, and on communicating. (By the way, this is the same sort of preschool I am now working in, helping children like Thomas... gotta love the circle of life!)

When he entered kindergarten, we had a special transition meeting IEP to discuss the options available. We could choose to send him to a regular ed classroom, with a full-time aide assigned to him; we could choose to have him in the SDC, with an option to go into a regular ed class in the afternoons; or we could choose to send him to a special ed classroom that dealt exclusively with kids with autism.

There are pros and cons to each decision... In a regular classroom he would be overwhelmed with the noise, colors, and sheer numbers of other people in the room. He'd most likely end up needing to leave the classroom on a regular basis, walking around the campus with his aide. In the SDC he'd be in a smaller setting, but it would be "special ed." (Some people have a hard time with that "label," but it IS specialized education, so I have no qualms calling it that. I've never seen labels as something that define; I choose to see them as something that acts as shorthand to give insight.) The specialized classroom for autism ended up being taken off the table because Thomas was "too high functioning" for that particular class, which was for children who were mostly nonverbal, behaviorally challenged, or otherwise more significantly impacted than our son.

We went with the SDC at a regular ed school, and we were happy with the choice. It seemed like a good blend of academics and social opportunities, and we worked closely with the staff to help make Thomas's experience as successful as possible. The teacher was great, his aide was great, and the community within the school was great -- but Thomas challenged everyone. We had to set up a Behavioral Plan (yes, in caps) at a specially-called IEP, and the teacher and aide had to collect data every day to show if Thomas's behaviors were improving under the plan. (They were not.) At one point we had someone in the district say something about "if this is the correct placement for him," and my ears perked up. It turns out there WAS another option, one that had not been apparent to me: a private school, expressly set up for children on the autism spectrum.

This was midway through Thomas's kindergarten year, and while we weren't able to get him into the school for first grade (the primary classroom was at capacity, and the process to get a child enrolled -- through the school district -- takes time), we did get him in for second grade.

Let me tell you now, this has been the absolute best move EVER.

Thomas is thriving at the new school. He's gone through the testing phase, and he's moved into the stage where he trusts and respects the adults around him enough to settle down and do the work set before him. All the goals that were set (based on his classroom performance and assessments) were revised to reflect the "new, improved" Thomas, and to shore up areas that he needs more work.

On the IEP paperwork the school is designated a NPS (Non-Public School), and it is paid for through our local school district, because it has been determined to be the best fit for our child's educational needs.

The school uses all sorts of therapies -- behavioral, occupational, speech, etc. -- in conjunction with specially-trained teachers and staff who all work together to meet the kids' needs. The academics are tailored to each child's level, but they are rigorous -- if sitting and writing a three sentence paragraph is too difficult to do in one sitting, they are commited to finding a way to make the task possible. Maybe they take the child for a brisk walk, or a stimulating swing, or toss a ball back and forth in between sentences. Maybe they let the child sit on a rubbery ball instead of a chair. Maybe they give the child earphones to drown out the background noise and let them focus on the task at hand... The paragraph gets written, but the child's needs are met as well.

At our last IEP we heard glowing reports from all the therpists and teachers, and we shared some fun stories about Thomas -- like how he wanted to skate in the center of the roller rink at classmate C's birthday party, under the disco balls, so he could dance! -- and everyone agreed that this placement was absolutely the best fit possible.

Our son can't run fast enough to get on the bus in the morning, and he comes off the bus happy and calm each afternoon. In between magic happens... and we couldn't be happier.

Patriot Day, 2009

Mama bear — Fri, 11 Sep 2009 15:30:02 GMT

My flag is out, fluttering in the faint breeze this cool September morning, just as it was eight years ago today.

It is out in remembrance of the innocent lives lost in the space of a few terrifying hours on September 11, 2001; it is out in honor of the bravery of so many rescue personnel, both the day of the tragedies and the days, weeks, and months immediately following; it is out to mark the decision so many Americans made in the first few days after the attack to live life fully - to not let terror define us, but to embrace the freedoms and gifts that we as Americans own.

It is out because eight years ago I was home with my two year old daughter, my son growing in my womb, and the only thing I could think to do to stand in the face of the unknown was to put out our flag and pray.

It is out to say I stand for America.

It is out to say terror will not win.

It is out to say remember - remember the lives taken, remember the lives dedicated to keep us safe, remember the lives currently on the line to protect us.

My flag is out to say hope will always be stronger than fear.

My flag is out, and it will wave proudly, bravely, beautifully in the breeze, because we are still standing strong.

New Article

Mama bear — Fri, 11 Sep 2009 15:29:58 GMT

Enter Text Here

Background...

Mama bear — Mon, 15 Jun 2009 19:44:42 GMT

You know when people get frustrated with a relative and say, "God! They drive me crazy sometimes!" Mine actually do: I have some mental illness in the family. (I know: who doesn't, right?)

My mother was diagnosed as being paranoid schizophrenic when I was an infant, but later on her diagnosis became more along the bipolar lines. When I was little I simplified it for myself by saying that my mother has good days and bad days. Good days meant she was awake, drinking coffee and laughing that gravelly smoker's laugh and smoking unending cigarettes, trying to be philosophical but falling a little short. Bad days meant she was asleep (or awake for the third or fourth day in a row) or completely unreasonably argumentative or bizarrely religious.

Since my parents divorced early (I was maybe 3), and my dad was one of the first dads in CA to get full custody (this was the early 70s), I saw my mother on visitations. She was painfully happy to see my brother and I, but it became harder and harder to bear up under her neediness -- she wanted so much to be a mother to us, but she couldn't take care of herself, much less us. Her neediness ate at me, grated on my nerves, made me anxious. As a simple example, she'd do things like save the ads in the Sunday paper for silverware patterns so she could ask which one I liked best. I'd pick, and she'd immediately say that was her favorite, too. It was like having an annoying little sibling trying to copy me... wanting to crawl inside my head and BE me... wanting to take me over. The four hour visits left a fog of depression over my brother and I (and my mother, too, I'm sure) that lasted for a day or so after we returned home.

When I became a grownup I tried to have a relationship with her, but the parenting thing was an issue. At 18, 19, 20 I felt I didn't need parenting; I had finished my vocational college training and was working and paying my bills, making good choices and moving foward in life. She wanted to be my mother in the tell-me-what-to-do sort of way that had already been done by that time. Plus, I felt like I was sort of pushed into the parenting role with her: I was the adult, she was the rebelling teen, smoking because no one was going to tell HER to quit, or staying in a hellacious relationship because at least it was someone there... Again, it became exhausting, depressing, really, to just be around her.

I tried to explain it to someone one time and the best I could come up with was this: She is the black hole of need. No matter what you do, it's never going to be enough. I love my mother; I just can't be around her and remain sane enough to carry on, myself.

When I became a parent, myself, I began to pull back from my mother even more, to protect my kids and myself from the emotional rollercoaster. I couldn't stand the smoking, I couldn't stand the calls that berated me for one thing one minute, and ended with crying and a religous diatribe the next. I couldn't stand the neediness that had no end... I went through enormous amounts of guilt, and still do feel terrible about not seeing her, talking to her, or being involved in her life... but I know, deep down, that it is the ONLY course that I can take right now.

I have compassion for people going through mental illness, but also for the family members who have to watch as bad choice after bad choice gets made, with predictable results. The family members are the ones that have to pick up the pieces... Mental illness is not contagious, but it affects more than just the person with the diagnosis...

I don't have a relationship with my mother, not because I don't care, but because I care so much it hurts too much.

March 25, 2009

Mama bear — Thu, 26 Mar 2009 11:06:52 GMT

Dear Megan and Family,

Thank you for sharing Emily with our class. She truly was a delight. Every morning when I came in the classroom she greeted me with squeaks and squeals. We had our little ritual. She was soft and smart, friendly and cute. She was a great fourth grader and I will miss her.

Love,

Ms. Jordan

Grief

Mama bear — Thu, 26 Mar 2009 11:03:50 GMT

Today started out normally enough, with the dash to get out the door with both kids, both backpacks, both lunchboxes, and both jackets before both schools started.

The phone rang at 9:30 and Megan's teacher told me Emily the guinea pig was not doing well. (Emily is Megan's pet, but when a hamster deal fell through early in the year I managed to convince Ms. Jordan that a slightly used guinea pig would make a pefect classroom pet. Talk about win/win!) I understood that I should come right away, and I did -- and immediately I knew Emily would not make it much longer. She was on her side in the fluff in the bottom of her cage, not moving except for small reflexive digging motions and an occasional loud breath.

I took Emily home and sat with her for an hour on the floor, petting her and talking to her. I told her what a great guinea pig she was, and how happy she'd made so many kids. I told her she was beautiful. I told her we loved her, but that Megan especially loved her. I told her we'd never forget her, and I thanked her for being so sweet.

When she died, I sat quietly for a few minutes, in a sort of disbelief. A bunch of practical questions swarmed in my head: Should I call and let Ms. Jordan know, so she could tell the class, or would that be disruptive of the day? Should I get Megan and bring her home? What could we bury Emily in, and where in the yard should we bury her?

I decided to go ahead and call Ms. Jordan, figuring that the kids were all worried about Emily, anyway. I trusted Ms. Jordan to handle the grief process with them, and I figured Megan would be better off with her friends -- who also loved, remembered, and grieved Emily -- than home alone, missing her lost pet. I found a small shoe box (okay, a largish one, as Emily was not petite) and put a soft cloth in the bottom, then carefully put Emily on it. I left the "where" question to Matt, as he has intimate knowledge of the sprinkler systems, rock/clay/dirt ratios, and other woodland creatures that might be interred. (We have one bird buried, to my knowledge: it hit a window and was laid to rest in a soft dirt patch alongside the house.)

Grandpa picked Megan up today, but they came straight home. When I opened the door, Megan was pale and teary, and she melted into my open arms with a fresh storm of tears.

In class, Ms. Jordan told the kids what had happened, then read them The Tenth Good Thing About Barney by Judith Viorst -- the classic pet grief book for children. She also had them all write a letter to Megan, Emily, or our family to express their condolences or grief, or to share something they remembered about Emily. Ms. Jordan's letter was on top, with a copy of the book and a packet of pansy seeds for planting. (I'll add the text of her very sweet letter to the right.)

This was Meg's first up-close brush with death, where she is fully aware of what is happening. She was 3 and 5 when my two grandmothers died, but she was fairly insulated from the raw grief; this time there was no insulation. ("I didn't know, then," she sobbed. "I know now. I understand!")

When Matt came home he dug a small hole in a quiet section of the backyard, and Megan said a final goodbye to Emily, petting her softly one last time. We lowered the box into the hole and Megan insisted on covering it herself, first laying a bunch of flowers she'd gathered on top of the shoebox. When the dirt was all on top, she carefully placed a heart-shaped rock and several more flowers on top and stood silently for a few moments at the side of the memorial.

We've talked about grief, and sorrow, and the pain of losing someone you love. We've remembered funny stories about Emily and shared laughter, and we've shared a few tears. We'll probably be dealing with this for a few more intense days, then tapering off to a once in a while sort of thing... But losing Emily brought another loss close to my heart, and that grief won't go away as quickly. In watching Megan struggle to cope, I realized she was moving further outside my protective circle. I couldn't insulate her from this pain, and I won't be able to protect her from future pains and sorrows. She's growing up, and these milestones are a part of living. It's like I told her about losing Emily, though: This ache in your heart is very much a part of the joy that love brings; without love, we wouldn't have this sorrow. And without sorrow, we wouldn't treasure love nearly as much.

By that measure, Emily was very, very well-loved, and very treasured.

Follow Up, Part 2

Mama bear — Tue, 24 Mar 2009 01:19:04 GMT

The respite agency still has no answer as to why the gal slipped through the screening process -- they are waiting on the Department of Justice for an answer -- but our former respite worker apparently contacted the agency for a character reference... despite being let go with cause, which is a nice PC way to say fired... and of course, despite the fact that she is being held in a murder case...

It's mind-boggling, really, and yet, it's just another example of the woman's mental state.

I just keep shaking my head and sighing...

Follow-Up on "Slipping Through the System"

Mama bear — Sun, 08 Feb 2009 00:46:53 GMT

In the article I wrote about a respite worker later charged with murder, I mention that I called the agency charged with screening the employees, and was told that they had, indeed, screened the gal we'd hired to watch our autistic son. The problem was, despite the screening -- fingerprints run through the Department of Justice's system -- the two convictions for violent behaviors against other people and the resulting 52-week anger management program she'd been court-ordered to complete DID NOT SHOW UP. Again, these were CONVICTIONS on her permanent record...

The gal was no longer an employee of the agency, but I called them anyway and let them know about the front-page news article regarding her crime so 1) they knew about it, and 2) they could explain to me how she had gotten through their system. I was calm, having gone through all the hot emotions over the weekend between discovering the news and being able to contact the agency -- the anger and frustration and fear and aching vulnerablity had cooled to a steady sorrow more than anything else.

The director of the agency was understandably defensive about their practices, because the screening SHOULD have turned up any record or other flag that would prevent the hiring of an individual that would be problematic. "Fingerprints are completely individual," he said. "People can't fake them, the way something like a social security number can be misused."

It turns out that when they ran her social, after the matter was brought to their attention, and after the gal had not been an employee for well over six months, the convictions DID turn up... which prompts a new look at the "screening" process they are using to clear employees.

The director called me to let me know they were still following up on this situation, and he had a direct question into the Department of Justice regarding this screening process. The agency is paying for the screening, and relying on it; it should do what they think it is supposed to do, or they should have a new system in place. I thanked him, and reminded him that their employees served a very vulnerable population -- medically or mentally fragile children and their parents.

Obviously not every agency employee is hiding a criminal past; this one gal got through the system, somehow, and tainted an otherwise excellent program. I am accustomed to finding the good in situations, so my take on this is "how can we learn from this, and not make this same mistake again?" Luckily the director is on the same page, and soon the families that rely on this valuable service can once again fully trust the people they invite into their homes to care for their children.

New Respite Worker??

Mama bear — Sat, 10 Jan 2009 05:45:55 GMT

I interviewed a new respite provider today, and I have high hopes that she's going to work out. She's young, but she has the common sense of a much older person... and she lives one town away, not three counties... and she's had experience with boys, autism, and boys with autism.

After the interview I set up a time for her to come watch Thomas for a few hours, planning it during an afternoon/evening next week when Megan has Taekwondo. Matt and I can both take her, and watch for a bit; and then he and I can scoot across the parking lot to a little Mexican restaurant and have an actual DATE!

She Did WHAT??!

Mama bear — Fri, 02 Jan 2009 04:22:35 GMT

One of the challenges of having a child with autism is finding qualified, competent childcare. Someone not freaked out by intermittent bellowing or other stimming behavior. Someone who gets that a locked, chained front door is not "secure." Someone who doesn't expect a six year old to behave like a six year old... I'm not talking about daycare here, just an occasional babysitter so you can attend an IEP (a meeting with officials to determine what services your child needs) or just have a date.

Our Regional Center provides hours of respite care, but the agency that works with them is located a county over from ours... and so are most of the providers. We don't have a set schedule, either -- just the occasional event. That is less desirable than a steady gig, because the providers are trying to make a living. (Not complaining, here, just understanding the cons to our situation.)

The last provider they sent us was driving from Sacramento, which is just over 2 hours away. We couldn't justify someone having to drive almost 5 hours to watch our son for 2 hours... and besides, she was a smoker. We went to an event and came home to the house reeking. NOT OKAY.

The one before that lived here in our town, but she was a bit shaky. She had a child of her own, and while the respite worker is not supposed to bring their own children along, she would ask to do so. When I had to work last spring break she watched the kids for six hours, and we found several signs that the boy was unsupervised for several minutes or more... He's quick, yes, but for him to shove a set of pajamas down an unflushed toilet means he had some time to plan and execute, and she didn't discover the problem to take care of it.

We found ways to not need childcare for awhile, and then we heard she'd been let go from the agency. (That's when they gave us the smoker from three counties away.)

But that's not the worst of it.

On the day after Christmas Matt was reading our local paper and he began exclaiming, "Oh my God! Oh, my GOD!"

The respite worker was on the front page, alongside a picture of her boyfriend. The boyfriend she'd stabbed to death, two weeks before.

The article went on to say she'd had two other convictions for domestic violence -- not "the police were called and talked to the parties," but CONVICTIONS in other relationships. The boyfriend had placed a restraining order against the gal this last summer, but then didn't renew the order. They were "working it out."

I called the respite agency and asked about their screening process, given the gal's history. They assured me they screen providers and do fingerprints... but how could someone with her legal issues get by? I didn't think to ask about her legal past when I interviewed her; I assumed if she was employed by the agency, they had done that. My questions were more along the "are you comfortable with his energy level?" variety, and the availability. (I also asked what arrangements she had for her child if she was going to be watching mine; her mother got paid for watching her daughter, as part of some work program, she said.)

This incident has shaken us, obviously. My heart aches for the man who was caught up in a relationship with her, and for both their families.(I have a feeling they have worried and struggled with her for years... She struggled with bipolar, depression and migranes -- the police found prescriptions in her car -- and I know that often people don't take their medications because they don't want to "feel crazy." That's crazy-making for those around them, and there's a sense of powerlessness as you watch the train wreck unfold...) I worry about her little girl, who is under 3 years old...

I'm also frustrated with the difficulty of finding childcare we can trust, use, and feel good about, and the neccessity of explaining to my 9 year old daughter what happened. (The short version: I said she had problems with the chemicals in her brain and she made some bad choices. The whole thing is a tragedy, and we feel sorry for everyone involved.)

I remain hopeful that we'll find somone wonderful to give us an occasional break... but before I trust, I'm going to do a hell of a lot of verifying, first!

A Christmas Poem for Those on the Spectrum

Mama bear — Thu, 25 Dec 2008 01:52:26 GMT

I did not write this, but it brought tears to my eyes...

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent..."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions. ..

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned...... .

update on Noe

Mama bear — Wed, 24 Dec 2008 05:09:33 GMT

Good news! Noe is improving steadily! The swelling in her brain has been going down, and the infections are on the way out!

She had a tracheotomy so they could remove the ventilator tube (which was very uncomfortable) and she's sitting up for the first time in three weeks. She's still in ICU, but they are making plans to move her to a facility that is more long-term care, with three or four hours of Physical Therapy a day.

They aren't allowing visitors yet, but friends and family have been keeping up with the play-by-plays online on a blog set up by Alex, Noe's husband, and her sisters. People have left encouraging messages for Noe -- and the whole family -- and kept them uplifted with prayer for this entire ordeal. Thinking of cheering up the two young sons, a group of friends and family got together and decorated the house with Christmas lights, and when Noe heard about it she cried tears of joy...much as we are crying when we hear the joyful news about her recovery!