Hiatus

A little break will do a Mama good, but damn is it hard to jump back into reality!
I was fortunate enough to finally have an entire week without hands on parenting duties.  I visited my parents back on the mother ship (after having not seen them for nearly a year-crazy) and then the other half flew in and we joined some of his friends and their wives for the Austin City Limits music festival.  I am fairly certain I have officially gotten too old to spend three days drinking ridiculous amounts of alcohol in the hot outdoors of a Texas park filled with 90,000 people each day.  Ouch.  My liver hurts!  I was so, so ready to get back and see my sweet boys.  I missed them so much, and I realized that feeling such an emptiness in my heart without them was exactly what I needed to feel to refresh me and get me ready to live the day to day craziness until the next break!  (which will likely not be for a very, very long time)

Along with the reality of day to day parenting comes the reality of crappy things happening around us all every single day.  Okay, so the rescue of the Chilean miners is a huge bright spot of goodness, but let's face it, it's tough out there.

I got some news from a close friend yesterday that has sent me into a bit of a tailspin.  One of B's best little buddies has just been diagnosed with leukemia.  I can barely type that out without getting a huge lump in my throat.  This little guy isn't even four years old and he has fucking cancer.  Seriously...WHY?

Clearly I am not experiencing the same depth of emotion as my friend is feeling for her son, but I have not thought of much else over the last 26 hours.  I feel a heaviness in my bones and have been walking around in a daze.  This is just too close.  Too, too close.  And I want to be there for my friend in every capacity she needs me to be without stepping on her toes or making her feel like I am doing too much.

Isn't that fine line in so many of life's situations a bitch?

No matter your beliefs, please keep a really freaking amazing little boy in your thoughts or prayers.  Light a candle.  Meditate.  Do a dance.  Just send some healing power to this kiddo.  D is truly one of the strongest and toughest three year olds I have ever met.  This kid's been riding a two wheeler since he was two years old and jumping off of bike ramps probably as long.  He has a gusto like no other and I know it will serve him well in this fight.

From The Mouths Of Babes

About a month ago, B and I were in the waiting room of the pediatric therapy center M goes to for private occupational therapy each week.

There was a boy there, a couple of years older than B, waiting with his mother for his appointment.
It was clear that the boy was on the high functioning end of the spectrum.  His social skills were a bit immature and robotic; things that my delightfully non-judgmental B didn't care about at all.

At one point, the boy said to his mother (while looking at me), 'Is that his Mom?'

Before the mother could answer, B did it for her by saying, 'Yes.  That's my Mom.  She cries a lot!'

WTF?!!

Fortunately, the Mom looked at me and said with what I believed to be complete honesty, 'That's okay.  I do too!'

We laughed about the waiting room at a therapy center being a safe zone for such frankness.  Perhaps B, even at the age of three, also sensed that because I have never ever heard him say something like that before that moment! (and I better not ever again!)

Naturally I fixated on this statement for a little while.  Does he really think I cry a lot?  Do I cry a lot?!


Don't we all cry for our children at times, special needs or not?

That afternoon in that waiting room has definitely stuck with me.  I try to keep my emotions a tiny bit more in check in front of B.  But I don't entirely regret the fact that I so often wear my heart on my sleeve.  It's a part of who I am, and hopefully B will always know that it's not because I'm crazy (well, not too crazy, at least) and instead that I just really, really care.

Ahh, insecurities.  Aren't they a bitch?

Life Without Plastic

I'm not a huge fan of 'Parents' magazine, but I've been getting them each month from a free subscription that never seems to end.  (anyone else get magazine guilt when they pile up unread?)

A couple of months ago there was a good article about environmental toxins and toxins in our homes.

I've really tried to use less plastic in my life, while also being careful to not let myself get too neurotic about it or hard on myself when I'm out of glass storage containers and have to reach for those few tupperware pieces I still have left.

It's a lifestyle change to stop using so much plastic, and one that isn't going to happen overnight.  At least not for me.

When it comes to my kids, though, I'm really trying to pick up the pace by replacing old, plastic sippy cups with Kleen Kanteens, not buying as many plastic toys (why, Disney, can't you make better quality toys since my kids are total suckers for them?!), and  I don't reheat things with plastic wrap or in plastic containers anymore.

Because of M's fine motor issues, we have found that we need special, lipped plates to help make his mealtime a bit easier for him, and a bit less messy for us.  Previously, I'd only been able to find these sorts of plates in questionable plastic form from the special needs catalogs.  The scratch marks on the bottoms of those plates made me a bit concerned...what is leaching into my children's food as they eat?

'Parents' listed a wonderful site that I finally got around to visiting yesterday, and I'm a new fan!  Life Without Plastic had these fabulous, deep plates...

And these adorable cereal bowls for kids...

I also got a couple of steel mugs for the kids, and a great, airtight container for M's lunchbox. I'm looking forward to getting them and tossing my old stuff in the recycling bin!

They've also got a great blog that I'm looking forward to delving into a bit deeper.  I think that whether you believe toxins are responsible for autism and other diseases or not, we can all agree that our landfills and the animals we share our planet with would be a heck of a lot happier without as many plastics.

Seven

I wrote the following for Hopeful Parents today.  Be sure to check out their site including their newest contributor, Valerie, from Jump on the Rollercoaster!

I have the pleasure of writing on the 6th of each month for Hopeful Parents, so I will also have the pleasure of writing a post to celebrate each of my son's birthdays.  Today M is seven, and like the last, I find this addition of a year to be bittersweet.  I am proud of my little man and what he IS able to do every day.  He has such a genuinely beautiful soul that shines regardless of his lack of words.  But it is hard to pass the years-the ones you had expectations of before he became him-and not feel a tiny bit crushed at what isn't.

This year, I have found it particularly difficult to hear about all of the other children M's age who are joining team sports.  Sports were and still are a big part of the other half's and my life.  I began playing soccer at age six as did my husband.  I listen to my friends talking about juggling practice schedules, first goals scored, paying for equipment, and cheering in the stands with other parents.  It makes me feel the slight twinge of the green-eyed monster, I must admit.  It makes me feel like we weren't invited to the party, and that everyone forgot and still wants to tell us how great it was afterward.

And the thing is, I don't want my friends to stop telling me about it.  I truly do wish to celebrate each of their children's achievements.  Oddly, I suspect that when friends tell me what their children are participating in, they don't even think about M as being the same age and missing out on those opportunities.  In fact, sometimes it is hard for me to remember that M is the same age as their kids.  Or perhaps this is just me projecting my sadness that age hasn't quite caught up to M; as though he is this Benjamin Button sort of being, aging in reverse.  

As time has progressed, my boy has lost words he once had.  He has lost the ability to be potty trained during the daytime.  He has lost interest in his peers.  And yet the calendar shows me that he is seven. Seven years old.

We participated in Special Olympics baseball this past Spring, but the realization that this was more so we'd have that photo of him in a baseball hat and jersey rather than for his true enjoyment came only a few practices in.  My boy would rather watch than play, and so this is how we participated instead.  And truly, I was totally okay with that.

 I'm becoming okay with a lot of things I didn't ever think I would just be 'okay' with.  It is a long journey to full acceptance, though, and one with which I will always wrestle.  I think the line between acceptance and giving up a hope for him to be able to function at a higher level is a fine one.  

Regardless, I will continue to build up each birthday with as much gusto and hype as I can muster.  I will bake him his cake and put the candle he is not able to blow out himself on top.  I will shower him with presents I am not entirely sure he will enjoy.  And we will sing, and we will smile with true joy.  Because we love him...No matter what.

La Da Di, La Di Da

Time is passing me by, faster and faster as the days progress. I just realized that I--the one who was fairly anal retentive about this task--am over two years behind in uploading family photos from my laptop onto Snapfish. I used to have a system whereby every few months I'd upload to Snapfish, create a backup on cd, delete from my hard drive, and then print out my favorites for a chronological photo album. Sounds a little nutty probably, but I love going through those photos with the kids, reliving all of the hand-picked, happy moments.

I thought we were going to put this crazy-ass house of stairs on the market 1.5 years ago and move back to the mother ship. I really, truly did. And in an effort to get it 'show-ready' I packed up all of my pictures in frames along with books that made the shelves look too cluttered and photo albums that took up too much space. They now reside in a lonely storage center where I haven't laid an eye on them in over a year. Oh, and the house still hasn't gone on the market...sigh.

We just got back from a 9-day vacation to the most beautiful place, Flathead Lake in Montana. We went with my best friend and her family for the second time. The first trip, three years ago, was so gloriously relaxing that I was chomping at the bit for this one to arrive. My black cloud decided to follow me, however, and I ended up sicker than I've been in a long time for the entire flipping trip. Woe is me. I know, I know. I have much to be grateful for, but sometimes I feel like I have really shitty luck.

Everyone had a fantastic time (well, everyone else), but I had lots of time to ponder where I am in life and how I am living it. The outcome? I'm not at all happy with the way I pass each day and know that I am not living up to my full potential. I am too-this and not-enough-that. I don't laugh like I used to. I fret over shit I don't need to fret over. I am on edge. I have a lump in my throat. I don't know where the heck the flip switched from 'then' to 'now,' but it's switched and sort of feels like the damn thing is stuck. I realized recently that I, the one who fostered dogs for six years and held that fact dearly as a big part of who I am, can't even stand to have my own two dogs underfoot anymore. I have not sung in public in nearly two years. I feel uneasy for the first time in my life when on horseback. Seriously, folks, these are three of the most important 'me-things' I've got, and I am losing sight of them all quickly.

One thing is for sure, I am no good parenting around other people beside my immediate family. Hell, I'm probably not even that good around them either! But my sensitivities and insecurities that have always been just beneath the surface are now open, festering wounds for all the world to see. Bandaids, please! Stat!

M did great overall on the trip. The boy truly loves it when we rent a vacation home, and it is a joy to witness. However, his food obsessions were in full-force during this trip, and that is a tough one when you are traveling with another family who also has two young children. M was constantly swiping food from the 9 month old's high chair or their three-year-old's plate. And most of it was gluten-containing, so that was an added hyperactive bonus for us all. I found myself so infuriated by this that I was constantly yelling, "M! NO!" when I caught him doing it, and naturally putting the rest of the group on edge. I guess that sometimes I feel like I'm the only one paying attention, though, and I'm sort of tired of it. I very much want to relinquish all concerns in that regard for a few days, but I can't.

The weather sucks currently where I live, and I know that plays a huge part in my melancholy. I love that word, by the way. "Melancholy." I saw a doctor of osteopathy a few weeks ago to check out cranial sacral therapy and to look into alternative/complementary means of aiding my overall health. After going through my lengthy history and coming to the part where I said that over the past couple of years I've definitely noticed an increase in anxiety and depression--but not really depression, she said, 'So you're saying you've noticed more melancholy?' And I paused for but a moment and said, 'Yes, I'd say that's exactly what it is!

I am taking my vitamins; mutli, omegas plus vitamin D3, calcium, and probiotics. I just ordered the Turbo Jam dvds hopefully to not waste them as I have with previously purchased workout videos. I have a sitter coming tonight after a week-long solo flight while the other half has been across the country on business. I am trying, and yet it does not seem to be enough. I need an attitude adjustment. I need a house that doesn't have so much negative energy floating around it. I need a school district I feel is more qualified to help M. Oh-wait--a bright spot! I adore our new ABA therapist, as does M, and am so grateful for that huge weight that has been lifted from my shoulders.

So it's not all bad, right? RIGHT?

And it's going to get better, right? RIGHT??

And maybe I'll blog more than once every two or three weeks, right?!

Let the sun shine!

Oh, Right...THERE'S The Anxiety!

I knew it had to be hiding in there somewhere!

I guess the reason I didn't feel it yesterday was because my brain knew that there was no way in hell the school district would actually do what they said they would...call me back with information about MY CHILD.

Yep, I waited here all flipping afternoon for a phone call. I even left two voicemails during that time. Nothing. Nada. Zilch.

I sent an email first thing this morning letting them know my disappointment and today's availability. Still...nothing. You'd think they would have gotten to work this morning, listened to my voicemails and thought, 'Shoot! That's really crappy of us to have not called her yesterday when we said we would. We should make that our top priority today.'

Alas, no, these people do not operate this way. They have zero integrity or compassion.

And so, here I wait, with a lump in my throat and the knowledge that I'm probably going to start crying at any moment. I've cleaned my house. I have drunk way too many cups of coffee. I'm listening to some really great music. And yet, all I care about right now is hearing what my son's future is; what my family's future is.

Please call, dammit. Please.


Good things come to those who wait. Good things come to those who wait. Good things come to those who wait. Good things come to those who wait....

Say What You Mean To Say

One of the greatest things autism has taught me is how dear those around us who assist us in something seemingly small, offer a warm smile, or go the extra mile to make our lives a bit easier are.

I'm not saying I didn't take note of the good people around me before, I'm saying that maybe I didn't speak up as I should have to let them know that I appreciate them.

Many of us are not entirely comfortable with words or gestures of gratitude; myself included.   Is it that we as a society have gotten so far away from helping one another live life together, as a community, as a unit, that when we do work on each others behalf we almost feel surprised?  I'm not sure, but I know that I need you--each and every one of you--to help me walk through this crazy life.  I will try not to lean too hard on you, and I will try to lift you up when you need me.  But most of all, I, because of autism, will be more inclined to let you know just how much your lifting up means to me.

After much difficulty with my insurance company, I finally was connected to a person who gave a damn.  (and had an ounce of work ethic, I must also add)  She helped me accomplish something I'd tried for nearly two years to do.  Two years worth of hours of phone calls, transfers to rude and incompetent representatives, mysteriously lost or 'not entered' information about previous hours worth of calls.  And tears.  Lots and lots of tears. 

And, so, because this representative finally did the thing that no other seemed to be able to do, I made damned sure that I asked to speak to her supervisor to tell him so.  She humbly obliged a phone transfer and thanked me.
It took 30 seconds for me to do that, and I hope that in turn she eventually gets a pay raise or a promotion.  You never know...it could be something so seemingly small that assists her in life a bit too.

So thank you--all of you--for what you do for my family by reading this blog and telling others about the trials and tribulations of life with autism.  Thank you for emailing me and calling me to let me know you love me and are thinking of me.  Thank you for praying for us, thank you for lighting a candle for us.  Thank you for being kind to other families living with autism because you care about mine.  Thank you.

The Boy He Once Was

I am preparing for my meeting. I leave in one hour and hope I do not allow myself to get overly emotional. I am bringing a copy of goals that were made for M two months before we moved away from the mother ship; just over two years ago.  My, how things have changed in that time.  On this same goal sheet are progress notes like the following: 'The student has made good progress in increasing interaction with peers. He interacts in play with peers for 1-2 minutes. He is showing an increased interest in his peers. Often greets them by name. Smiles at them, touches them, laughs when they laugh, approaches them, and verbalizes to them. He inconsistently identifies at least 7 body parts. Attention to task is brief with frequent verbal, visual, and physical redirection. He attends well to singing and story time. He will walk in line holding an adult's hand.'

Or this...

'The student has made good progress in identifying colors, but performance is inconsistent. He does not identify his name, but verbally spells his name leaving out the 'l.' He rote counts to 5 consistently and to 13 at times. He identifies the number 5 and circle shapes.'

So, these things may not sound like a lot, but oh, what we would give to hear him say another child's name, to laugh when they laugh, to almost spell his name verbally, to name ANY body parts or count ANY numbers! This report was just two years ago...two years in which his and our world has crumbled and gone backwards, instead of progressing.

I also found a few photos that one of his old teachers had sent of him interacting with his peers. He was so happy back then. These are smiles we don't generally see anymore, and that in itself is a very difficult thing to stomach.

I'll leave you with photos of him and his classmates from the mother ship, as well as a photo with his best buddy and two teachers when he visited them five months after we left. Damn...

Look at him participating in this activity with his classmates!  

Here he is with two typically developing peers that were in his preschool class.  The blonde, C, was one of his favorites.  He would call her name as we got to school, beam with happiness, and then enter school while tightly gripping her hand...not once looking back at me for reassurance.

A visit back home where his amazing teachers took time out of their personal lives just to come see him...imagine that?!  Oh, what I would give to have these two amazing women back in his life again.  These are true teachers who go above and beyond to help their students achieve their goals.  I love you, B & G!  Thank you for a wonderful two years!

Ohmmmmmmm......

Alright, deep breath, Deb. Paranoia will destroy ya, eh?!

If in fact someone from my school district is reading this blog, I hope that she understands just how much I love my kid, how much he has regressed since we moved here, and how the right thing to do is to put him in an appropriate environment where he has some shot at achieving goals and being able to live a reasonably independent life. I completely get that funds are tight to non-existent. I am sorry for that and the domino effect of problems that comes with it. But a child is in an inappropriate, HARMFUL situation here, and something needed to be done about it...yesterday.

I may have noted this in a previous post, but a very well-respected school director told me last year in dead seriousness, 'Deb, I don't mean to scare you, but there is a very real urgency to getting your child out of the situation he is currently in.'

This is a person who knows. Someone with decades and decades worth of experience in teaching and advocating for children on the spectrum. She has seen so many of our kids damaged by inappropriate teaching who have ended up--finally, when it was nearly too late--at her schools. Why must we wait until a child gets so far down the wrong path behaviorally before our schools decide it is time to do something about it?

I was telling a friend today about the boy M used to be...the boy everyone called 'an old soul,' 'a seer,' 'intuitive and wise,' 'sweet and gentle.'
We haven't quite taken the full leap off that cliff to the negative behaviors I have sadly heard other parents talk about; he scratches those he works closest with, and fortunately that is about it at this point. He does not self-harm, he does not head butt. He does not throw things. Yes, for this we are very lucky. But since we haven't gotten there yet, isn't now the very best time to take all measures to make sure those things DON'T happen?

But beyond that, let's talk about teacher accountability. If you've got a teacher who is blatantly prejudiced toward a student in her classroom who is significantly lower-functioning from the peers in his classroom...to the point that he must sit alone at a table with his aide and not participate in most class activities...to the point where she 'forgets' to put things in his backpack or tell him about fun things the other students get to do...to the point she 'suggests' he not attend a day at special olympics...well, do I need to continue on as to why he does not belong in this classroom? And shame on you, teacher, for being so horridly insensitive.

If I had the money to send my son to the schools he needs to attend, I would in a heartbeat. But I don't. I don't know anyone with a similar case who does. So I have to rely on the school district to do the right thing and place my child there for me..because that is what FAPE (free and APPROPRIATE education) is in place to do.

So, with that...I will see you tomorrow, district employee. I hope we have a productive discussion about M's future.

A Lot On My Mind

I think about blogging every single day, and yet it is hard to take even a few quiet moments to gather my thoughts here. 
I am really trying to use the word 'balance' as my mantra for this new year.  My stress levels are at times feeling quite unmanageable, which I know is not healthy.  It's all about control, and feeling like I have so little of it is not something I am suited to accept.

As many of you know, I have rescued quite a few pets through the years and spent my six years in Austin fostering dogs through the amazing Blue Dog Rescue, and working with local shelters. 'Animal rescuer' became a part of my personal title that I was proud of; a title that made me feel like I was doing something good and important in this world. It was beyond a hobby...it was a commitment to making the world a better place.

During college and in the years shortly thereafter, I adopted a total of five pets: three dogs and two cats. You may recall this past summer when I lost my sweet, sweet Daisy dog to an aggressive form of cancer, and the number of pets became four. Four pets in a house ill-equipped for any pets at all combined with the stress of raising a child with special needs equals even more stress. I wasn't the type of pet owner I wanted to be and have felt incredible guilt at my frustration with the animals. But we chugged along as we always have, because it is my firm belief that you adopt an animal for life.

That is, until one of my cats began peeing all over my house last summer.

I adopted Jade as a naive college student. I would go to the local animal shelter constantly to the point where they no longer required me to have an employee escort me to the kennels. One day, I came across a bright orange tabby cat with six, tiny orange kitties and two, totally-out-of-place, gray and white siamese mix kittens. It turned out that the Mama had her kittens in the same dumpster as a Siamese and for whatever reason, these two misfits were left to fend for themselves. And, so, as is often the way in the amazing world of animals, the orange tabby selflessly gave her milk to the two Siamese mixes who needed that in order to survive.

I learned that the kittens would be available for adoption in two days, and I returned fairly soon after the shelter opened to see that all of them had been adopted except for one of the Siamese mixes. She was tiny and sniffly and anyone in their right mind knew she probably wasn't going to make it. But since the staff knew me to be a giant sucker, they told me that they'd just give her a shot of antibiotics and she'd be just fine. The part they neglected to tell me was that she was only two weeks old and would have to not only be hand-fed, but would also have to be assisted in all things, including simulating a mother cat licking her to make her go to the bathroom! A few days into her new life with me, I noticed her tummy swelling to obscene proportions. Fortunately I had enough wits about me to call a vet who explained she could have basically imploded from the pressure if I hadn't called them sooner. Great! Fortunately it required nothing more than remembering to occasionally, ahem, 'massage' her with a warm washcloth.

Jade was always very elusive. She was social only with me, and even then, only at certain times of the day. She adored the dogs, though, and was the pet project of her bossier older feline sister, Kahlua. It was clear, however, that even when you adopt an animal as young as she was, you can't quite take the feral out of a feral-born cat.

I'll spare you any more of my ramblings and bring you to the present. I made the decision to euthanize Jade yesterday. It was absolutely one of the hardest things I have ever had to do. I don't 'kill' animals...I rescue them! But the strain of cleaning endlessly peed upon carpet has taken its toll on the entire family. One of the boys' bedrooms has not even been in use for months because I got so fed up that I actually tore a large chunk of carpet out of it and threw it away. Who lives like this? When we got home from a six-day vacation Wednesday, the wetness in our master bedroom was so unbelievable that I knew we couldn't do this any longer.

I had taken Jade in three months ago to rule out any medical conditions that could make an almost 15-year-old cat who'd never soiled outside of her litter box start this sort of behavior. I was so hopeful they'd find a urinary tract infection or something else that was either treatable, or would give me a clearer conscience about euthanizing her. But neither occurred. For some reason, Jade wasn't happy anymore. She spent nearly the entire day curled up underneath a fleece mat inside her crate in the laundry room and came out only at night to wreak havoc on our bedrooms.

And so, because I could not see any other areas of stress in my life that could be eliminated, and because SOMETHING had to give around here before I have a full-on breakdown, I chose to end my cat's life.

I can only hope I can be forgiven for such a thing.

I know those of you who aren't animal lovers will think that is insane to worry about...and those of you who are will hopefully say a little prayer that her passing was quick and painless, and that she forgives me.

And then...there were three.

$@%*&!

Man, I got a bit worked up at the end of yesterday's post, didn't I? And you know what? I'm probably even more worked up about it all now!

I'll bet just about every parent of a child with special needs--but more specifically a child with autism--has heard the story of someone they know being told to just accept that their child was never going to progress...never going to amount to much...never say 'I love you.' I know I've heard these stories hundreds of times and have always counted my blessings with the knowledge that there was still *hope* for my child. I've never thought he would be a rocket scientist...I'm not sure I've ever really believed he'd even graduate from school. But I did do think that he has a chance to be a productive member of our society...a person who is liked and looked after...a person who can live happily for the majority of his days without feeling like he needed to have a tantrum in protest of the hard-to-navigate world surrounding him.

His teacher--with her comment that 'maybe this is just who M is'--in a much subtler way told me to accept that he is not going to amount to much and is going to live the rest of his life as a very difficult human being to be around.

You may think I am reading something into this phrase that isn't there, but I assure you I am not. Her intent was not to be hurtful or malicious--this is the only difference between what she said and what I have heard others to have been told. But the message is still the same and I will not accept it. This is NOT our future for M. It is our present, yes; and it really does suck at times, but we will get past it with the help of the right people. I have to keep telling myself that we will find those people and a way to work with them. I have to. I have to. I have to.

Fuel

I type this after one of those adrenaline filled hours where M's recently discovered fever spiked to 104 degrees and has now settled at a more comfortable 101.5. A coolish bath and the giving in to motrin seemed to help him immensely. I only wish I hadn't dragged the poor child and his brother to a two+ hour ophthalmology appointment after school today...if only I'd realized that one of the reasons he's been in such a foul mood for over a week now is because of the way he's feeling. But I can't beat myself up over the 'ifs.' When you have a mostly nonverbal child, you just don't always know these things.

So I alluded to how rough things have been for M as of late. The last couple of weeks have been, once again, filled with agitation, hyperactivity, and worst of all, aggression. I have a few bruises and scratches on my arms to prove it. Last Tuesday after a particularly bad day where his teachers remarked on how off he seemed, he came home only to have an explosive bowel movement in his pants (totally unusual), that lead to an hour-long cool bath and the putting on of jammies all before 3 pm. I left him to rest in my bed and went to take a shower for myself and found him zonked out when I was done. He slept until 1:30 am, woke for 30 minutes, and slept again until 7:30 am. There were no other real symptoms. Things did not improve greatly over the next week and both yesterday and today I was met with the grim-looking faces of his aides when I went to pick him up. He's had two more 'really rough days' and 'seems uncomfortable in his own body.' 'He is agitated and aggressive when we ask him to do work.' And all the while I really have no rebuttal other than to say, 'I don't know what the hell is going on.' Because I don't...not for sure anyway. And I'm paranoid of saying something that they could hold against me if we ever have to go to due process...though that keeps looking less and less likely for reasons I'm not going to spell out.

But one thing really has me bothered from today's pickup, and my lack of reaction is really eating at me now too. M's main teacher joined my conversation with the aides, echoing their sentiments and concerns for M. I said to all them that I felt odd when I didn't have reasons for these things and am feeling lost about what to do about them. The teacher--mind you in a very caring manner--said, 'I think this is just who M is now.'

It hit me like a ton of bricks when I discovered M had a raging fever a few hours later. How could I have been so stupid? Of course there is something going on to cause him to act this way lately! Her statement made me realize more than ever just how incapable this staff is of working with my son. Ask M's private therapists. Ask M's teachers from Texas. (B, if you're reading this, back me up!!) M is and has always been an old soul of a boy who has endeared those close to him.

I have said to these people more times than are natural, 'Back when he was in Texas, he could do "x." ' Because he could. And he did because he was understood better and in a classroom that wasn't fucking cluttered from floor to ceiling with academic noise and supplies that meant ZERO to my child. He was in rooms that had organization to them...a place for everything. He had clear picture schedules and labels to help him navigate through his day. This is not the case in his current school and the more I type, the more pissed off I am getting about this.

Something has to change. I can't keep watching this any longer...

Blah, Blah, Blahs

It seems a lot of bloggers I follow are blistless these days. I think about writing almost every day and then a case of the blahs overcomes me and the thought is gone.

This is always a weird time of year for me. The calendar is way too full. The days are getting shorter. In most parts of the country, the weather is finally cooling. Oddly enough here, on the northern California coast, this is the warmest time of year. The 60-70 degree days full of sun and little fog are glorious when you are outside. Not so glorious when you live in a very vertical house on the top of a hill with no air conditioning. So my autumnal need to sort of hibernate and hunker down is all out of whack. I'm yearning to wear sweaters and boots--and in fact can for the first two hours of the day--and then find myself stripping down to summery-ish clothes and wanting to take a nap by early afternoon. There's just not a lot of productivity going on for me right now!

We've also been in a weird place with M for so long that I feel totally whiny reporting our day to day ups and downs here. You never know which end of the teeter totter you're going to sit on when you wake up. And most of the time you end up being the sucker whose sitting across from the kid with that look in his eye, not knowing when-but knowing you will eventually be slammed to the ground with a thud when he decides in a split moment to abandon ship. I told my best friend, L, the other day that I wasn't sure if I was brave or stupid to continue to try and take M with me to new places or to run errands.

This after a very failed attempt at a Mommy/Son breakfast after dropping B off at nursery school. M was in a great mood...doing some great spontaneous labeling of things around us. The restaurant was quiet--only two tables seated besides ours. 'Do you want eggs, M,' I asked. 'Eggs,' he replied enthusiastically. 'Do you want bacon or sausage?' 'Sausage!' 'Do you want fruit?' 'Fruit!' And then when the waitress actually came to take our order all hell broke loose. He shoved the table away from his body hard enough to spill the container of half and half. He slithered to the floor and began to scream--loudly--and then dug his nails into me, pinched my arms, and clenched his jaw in anger as I tried to pick all 54 pounds of his limp weight from the ground without totally losing my shit on him.

I was very lucky this time--as bad as this outburst was (and it was REALLY bad), I was in a bit of a safe zone. The waitress had met us before on better days, and the hostess had seen us around town. They offered compassion and kind words and were ever so patient with me as I brought M to the car and then came back in to wait for our food to go. This is the beauty of living in a smaller town such as the one I live in, and I guess the one thing that makes me feel a bit braver than stupid when I go out into the community. I suppose in a way I'm educating the people I live near by showing them that even though my kid doesn't always have his emotions and behaviors in check, he is not just a badly behaved child. He has AUTISM, as do at least 1 in 100 other children in our world. This is becoming a way of life, folks, and we have to learn to accept and deal with it the best we can. Understanding is the first step. Of course, I say that, and half of the time I feel as though I don't quite understand all of this myself. The behaviors people with autism exhibit are sometimes so far beyond the realm of reason, or completely devoid of common sense, that it IS annoying and difficult to be around. I get this better than anyone because I live with it 24 hours a day! So I guess the message I am trying to send here is to really reach into your hearts and pull out an ounce of compassion not only for the children you see who have autism, but also for their parents. Their patience and mental well being is likely stretched beyond belief, and they--like their children--are trying as hard as they can to keep their shit together in a world that is becoming increasingly difficult to navigate with all of the noises, sights and sounds of those living typically around them.

Grab A Tissue

It has been a blessing to have met and connected with so many other parents of children with special needs via the Internet. One such friend, Valerie in Australia, wrote the lyrics and put together the montage for the video below.

I admit to doing some of my not-so-pretty sobbing while watching this. Even as a parent of a child with autism, sometimes I am not as empathetic as I should be to M. It is a very difficult thing to try and understand how something as seemingly benign as the wind, or too much noise could send someone into a complete tailspin; but this is what it is like for many people with autism.

I love you, M, and I promise to do better by you; to understand you, to help ease your fears, and to make you feel safe and secure.

Things I Am Currently Stressing Over

Bet you can't wait to hear, huh? Bet you can guess what they are, huh?
(Alright...anyone reading the above with an old-timey, Jimmy Stewartish voice, while mimicking tipping their cigar ashes to the floor? No?? Huh...)

Money: It is freaking expensive to live here. The other half makes a great salary by all accounts and yet we still worry. Ridiculous.

The Real Estate Market: This one ties in nicely with the first. Let it be said that Mama Deb has finally accepted her fate and realizes there will not be a chance to sell--and subsequently move out of--this house until, AT MINIMUM, Spring of 2010. The final realization came last week after learning that a comparable house to ours came absolutely no where near appraising. Damn. Damn. Damn.

Anyone care to take dibs on which one is next....

SCHOOL! Yep, you guessed it. Still stressing about M's school. He did fine during summer school (different teacher, one of the same aides, mostly different kids, different elementary school...hmmm?), but has already shown great displeasure with going to class each day. We don't struggle every single day, but we're only about eight days in and I'd say five of those have been really tough. But what is tougher is hearing that he is very agitated, showing a ton of self-stimulatory behaviors, or easily angered during the school day. And at night we have been dealing with a little guy whose emotions are so out of control that he is starting to show a bit of rage towards mostly me and his little brother. It is both scary, upsetting, and enough to make a person really pissed off. There is only so much being pinched or kicked a Mom can take :(

And finally...

The grand combination of money AND school! Because I have just received a delightful little note from the district saying that though they are pleased to see M back in school this year, they need me to understand that they will not be able to continue serving him without me signing the latest education plan. (These are those IEP things I have previously mentioned. It is not recommended that a parent sign these if they are not in agreement with them. Because these plans have outlined an education that is to be granted in a public elementary school as opposed to the private autism school M needs to be in, I have not signed. I did this fully knowing that we'd come to this point eventually where one of us would be forced to take that legal turn...here we go!) So I am scrambling for advice from some specialists whose opinions I value and I imagine our next move will be to hire an attorney or an advocate. Can I curse here? Because I really want to yell out, 'FUCK.' There. That's better. Thanks.

That is all!

What To Do?

We recently took another stool sample from M to determine what was going on inside his gut. Given his hands-down-the-pants, behavioral issues, frequent illness, etc. his doctor thought it wise.

We give M probiotics to help balance his gut and keep him healthy, however, his gut is NOT balanced nor is it healthy. We had done the last stool test a year ago and subsequently treated him for some bacteria. This year he has more strains of 'bad' bacteria present at very high levels. The lab that analyzes this stool tests the bacteria that is present against various antibiotics to see which they are resistant to and which they are sensitive to. Unfortunately, the strains of bacteria that are currently present in my little guy's system are resistant to almost all of the basic antibiotics and sensitive to a very, very strong antibiotic, Cipro. I went to the pharmacy yesterday to pick this antibiotic up and the pharmacist came to speak to me. She told me she was uncomfortable letting me administer this drug on a child as it is usually prescribed to adults.

I have a call into our doctor (at Thoughtful House in Austin, TX), but also turned to my trusty parent listservs for some advice.

What I have learned thus far is that Cipro is treated for very, very bad bacteria including anthrax. I have also heard stories from another parent like one who had to give two rounds of it to her son. (He did fine and it made a huge improvement in him)

My son has been in a decline over the past year and if these harmful bacteria are the root of the cause, clearly I want them gone...but at what risk do you do that?

I am at a bit of a loss as to the answer to that question. If anyone reading this has experience with Cipro, I'd be very interested to hear about it. And if anyone is interested in learning more about the gut flora results, I'd be happy to post them or email them to you.

Disappointment & An Ounce Of Hope

Sorry for not updating you all on yesterday's meeting before now. Thanks to everyone who wished me well both online and off.
Unfortunately, about 10 minutes into the 2 1/2 hour meeting, I was well aware that they were setting me up for the grand finale: They think the current placement, along with a bit more speech, occupational, and behavioral therapies added in, is a free and appropriate education for my little guy.

I respect and like each of the people that was in the room for this meeting. I understand that it is not their job to just 'give out' alternative placements to students, especially with all of the budget cuts that have severely impaired our education system. I also realize that sometimes people don't necessarily speak up for the best needs of a child even if they *might* feel differently from what they say on the record. It is unfortunate, but it is what it is.

There was quite a bit of talk about M's progress with all of his goals. Just two weeks ago I had a parent-teacher meeting with his special day teacher who showed me all of her personal goals that she'd set for him one month into this school year. She told me quite candidly, (but in a way that I appreciated), that M was likely not going to achieve any of his goals by the end of the school year. And then yesterday she and the others present went on and on about how great he was doing and how far he'd come from the beginning of the year. I know that he did make progress in occupational therapy...he is absolutely stronger in his core than he was before, and he can now pedal a tricycle for a few feet independently. And I also know that he made "progress" in areas of speech if you consider reacquiring a couple of skills, like saying 'hi' and 'bye' that he had lost since moving a year ago, as real, measurable progress that should be the main reason for thinking that you are providing an appropriate education for my son.

Listen, I totally get that progress is progress. I just wish all of the other stuff could be taken into account along with it. Why does my child get agitated and resist going into school EVERY DAY? I don't care that he snaps out of it as soon as he gets into the classroom. How is it appropriate for a child with autism to have THREE different one on one aides throughout the day, along with seeing three different teachers (two special day teachers and one regular kinder teacher), and then four different therapists. (occupational, speech, behavioral, adaptive physical education) Let's add to that the fact that his portable building is at the farthest point on the campus and he is constantly being shuttled via the outdoors to rooms for various therapies, other classrooms, bathrooms, lunch room, playground, etc. And then let's add on all of the visual and audible stimuli around him. These classrooms are small, jam packed with supplies, and have walls plastered with maps, artwork, etc. that wouldn't phase you or I. Their rebuttal to my concerns about the campus environment? They put up fabric barriers around his desk when they are doing one on one work to help block out noise and visuals. In regards to having to walk all over the place during the day, they said that he is such a compliant, happy little guy, and doesn't have any issues going from place to place. I believe that he is compliant and happy; but that is simply because that is the child he is. However, I know that if you talk to any autism specialist, they would tell you that this many transitions and changes throughout the day is just not good for him.
I held it together really well for the first two hours, but toward the end when the pit in my stomach had grown into a cantaloupe, I did tear up a bit. I told them that I know that they all care very much about M, but to please not confuse his compliance and mild mannerisms as everything being okay and as progress. I mentioned my sincere concern that he is flying under the radar because he is not disruptive to the classroom, or a behavioral threat. I pleaded with them to take note of the potential that I see in him if only he had a true, autism-specific education.
I could go on and on about all of this, but I won't. I did not sign the paperwork and will be writing a letter saying that it is not okay with me and that I will need to look for other options. We'll see what happens then. I'm not up for a legal battle, nor do we have the funds to go that route. Although I expected it to turn out this way, there was a part of me that hoped they'd see what I see and fess up to it. Parents of other children in this class have told me that it is so obvious he needs something different...it's just a shame that money and bureaucracy fog the eyes of those who could make that happen for him.

On a positive note, I took M and B to the school I love that is 50 miles south of my home. This was my third visit there, but M's first to meet the director so she could see if he'd even be an appropriate fit for the classroom. As expected, she thinks that he would be. She was so smitten with my cute little guy, and he with her. It's amazing to see a child interact with someone who really gets them. M gets like this with his therapists, but I haven't really seen him get like this with his aides or teachers. Anyhow, though the grant money the school had hoped to have access to won't be available for two years, the director is going to speak with the school founders later this month about M to see if they can work out something for him to be able to go there. I offered to barter my services to help them in their office or with fund raising--that's how desperate I am! The director laughed and told me that she didn't want me to become an indentured servant to my son. Maybe that isn't ideal, but at this point, I'd do it if it meant a better place for him to learn and be happy.

This was quite rambled...I'm having trouble focusing this week with all that's going on. Next stop: Monday's genetics appointment. Stay tuned...

Memories

I was thinking about how tolerance is mostly a learned thing, with a dash of innateness thrown in...one that starts with your own parents and the example they provide as you grow.

In my home, no one (that I recall) ever stressed that people with disabilities weren't freaks or something to shy away from. Sure, they may have said it to me and I've just forgotten, but I think if it had been an important lesson that my parents wanted to teach me, that I would remember it.

When I was about seven or eight years old, I had an 'encounter' with Gay, a disabled student that attended my elementary school. Gay was at least a few years older than I. Everyone knew who she was, yet no one knew anything about her other than the fact that she was 'the girl who walked with braces, wore thick glasses, and a helmet on her head.' My guess now is that Gay suffered from cerebral palsy and other cognitive impairments. I don't ever recall seeing Gay anywhere except slowly making her way through the hallways when I was on my way to the bathroom or the library. Did she have a homeroom? What did she do all day? I had no idea.

Then one day I found myself in the nurse's office only a few feet away from Gay who was laying on the cot, clearly not feeling well. I admit I didn't know where to look or what to say. And then it happened...Gay turned gray and projectile vomited all over the floor. A small amount landed on my right hand. MY RIGHT HAND! The one I eat with! The one I brush my teeth with! How in the world could this have happened to ME?! I don't recall my exact reaction, but I clearly recall its aftermath. I scrubbed that hand with hot, soapy water, and yet it wasn't good enough. I ate and brushed my teeth with my left hand for what felt like weeks, but I'm sure was only a matter of days. I fretted over the fact that the girl with the helmet had thrown up on me and what that might mean. I was not sure why I thought her vomit was worse than everyone else's, I just knew that it was.

I was never cruel to Gay, unless you count not taking the time to even share a smile with her as cruel. I think about her to this day and wonder if she is even still alive. I have always had compassion for the 'underdog.' My Dad used to tell me I took all of the stray dogs in, literally and figuratively; though the human strays were kids who came from broken families, or who switched schools a lot; NOT kids with disabilities. I just wish that my parents had explained to me that people with disabilities aren't scary. Because I think if they had, I could have done a lot of great things as a kid with that understanding under my belt.

And so I'll end with the famous quote by Ghandi that I'm sure many of you have heard:

'Be the change you want to see in the world.'

Tolerance and understanding has to begin somewhere. Why not start with you?

Fired Up

Today I was heading eastbound on a busy highway and noticed that the westbound traffic was quite backed up. The culprit? A police car who had pulled over an old pickup truck with massive photos of an aborted fetus and a giant sign that read 'ABORTION IS MURDER!'

Clearly this truck (who I had seen once before outside a local planned parenthood) wanted people to stop and look at this disturbing imagery.

So here's my question: If a rubber necker who was looking at this truck got in a wreck and died as a result of it, what would that be?

Having A Voice

While reading a few of the other blogs I frequent, I realized that most of these writers have their own voice...a tone to their blogging that feels consistent, personable, and true to the people I'm getting to know them to be. Is it just me, or is my 'voice' becoming a little too whiny? A little too self-serving? A little too pessimistic?

Or maybe that is my real voice?

Crap...somebody throw me some happy juice, quick!!


You might not guess it, but I've struggled with my cup being half empty vs. half full all of my life. I do have a zest for life and happiness. I do see joy in seemingly joyless things. And yet, I'm still always waiting for the other shoe to drop. For the gong to sound. For the sand to run out. (For my brain to come up with some more cliches)

When I started this blog all the way back in June (!), I wasn't at all sure what direction I wanted it to go in. I had no purpose for it, really. I just thought it would be sort of cathartic to type out my feelings. Truth is, well, I'm not always totally truthful here. I definitely hold back. Part of that is so I don't sound like a completely insane, insensitive, schmuck. And part of it is to maintain at least a tiny bit of privacy for my family. I really think there's only one person in this world who has heard the worst of the thoughts that enter my head. (Thank you, L. What would I do without you?!)

I want to start blogging with a little more purpose. I'm still going to post things like "This day sucked ass." Or, "If I had a dollar for every time I said, 'M, get your mouth off the couch,' I'd be rich." But for the most part, I'm hoping to be able to be a bit more meaningful in what I write.

My buddy, Gwendomama, introduced me to a woman who is forming a blogging community for parents of kids with special needs. I'm thrilled that I'm going to contribute to it at least once a month. It is going to be rewarding to have a 'job' to do, aside from my demanding job of mothering. Once the site is up and running, I hope you'll show your support to the other contributors as well. In the meantime, you can check out the personal blogs of some of the writers who are already on board.

http://www.hopefulparents.org/


And with that, I'm going to go fill my glass--half full--with some red wine and enjoy this beautiful sunset!