Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Sunday, April 29, 2007

The Tootsie Roll Fundraiser

Fridays are shopping days. Normally I shop in a frenzy between the hours of 4pm - 5:30pm so I can complete most shopping alone (minus children). Last Friday I chose to go ahead and pick up the peanut and take her along.

My first stop is generally Walmart. On our way in there were a couple of men, probably mid-30's to mid-40's both wearing yellow overshirts participating in a Knights of Columbus Tootsie Roll Fundraiser.

They were fundraising to support adults with developmental disabilities.

As a mother of a child with a developmental disability, I have to explain my perspective some. At the time of his diagnosis I was confronted with emphasis in doctor's scrawl of how this PDD thing is a "lifelong disabilitiy." Faced with an overwhelming amount of decisions and tasks at diagnosis, perhaps I flinched at this, but it didn't sink in.

Then later, reviewing our first PCA contract, again that lifelong thing is touched on. Their final note? "Client may require some amount of assistance for life."

And walking by this Tootsie Roll Fundraiser it dawns on me. What do children with developmental disabilities grow up to be? Adults with developmental disabilities.

Something so simple. My lightbulb moment.

Now I realize children with developmental disabilities can grow up to be many many things and that confining their growth into a small box is ridiculous and cruel. Please understand that my hopes for my son expand far beyond just being an adult with a developmental disability, but there is a truth embedded in this that is very difficult.

Autism is not a childhood disorder. Autism is a forever disorder.

I walked past this tootsie roll Fundraiser and did my shopping. And then as we left Walmart I determinedly walked to this fundraiser and gave my part.

And then, wiping away tears, I walked my daughter and our purchases to the car.

And I felt as though I were sinking.

But then again, perhaps I felt more free.

Friday, April 27, 2007

Making My Pace

I did it! Kind of. For the most part.

Since I purchased my treadmill I have had a goal of running 3 miles in 30 minutes, so a ten-minute mile pace. And damn, it has been hard. I mean, I didn’t run for like six months or so. If I did I had no consistency. So working towards this goal, this achievable but pukey feeling goal of maintaining a mediocre pace for a short distance has been a tough deal.

I had forgotten how much work it is to build up endurance and speed. I had forgotten what it takes o build your body up so that it works more like God intended than a rusty machine.

And today, I ran 3 miles in 30 minutes, 20 seconds. Now that is exactly 20 seconds off my goal pace, but I believe it counts. I’m damn proud of myself for running an entire 3 miles at my goal pace. I’m damn proud of myself for not quitting. I’m just damn proud of myself.

My next goal?

4 miles in 40 minutes.

Or 3 miles in 27 minutes.

Think I can do it?

Thursday, April 26, 2007

And the Ball Drops Once Again

Leave it up to District 742 to do something as inadequately as humanly possible. Leave it up to the school district to fail miserably not only where time constraints are concerned but also where documentation and appropriate services and evaluations are concerned. Leave it up to district 742.

I’m tired of them dropping the ball. I’m tired of giving them their chance to do things appropriately and within the guidelines of federal law. I’m tired of them making what should be a “CHILD process” into a “DISTRICT process”. I am so stinking tired of their crap. I’ve been dancing their dance since October. And just when things started to ease, they let me down once again.


Ever heard of it?

FBA is Functional Behavioral Assessment. These are conducted when a child’s behaviors are interfering with their ability to learn. They root out the triggers of these behaviors and the functions they serve. FBAs then seek to intervene and solve the problem at its root rather than react when the problematic behaviors occur.

Now Sandis is a child with behaviors. Good Behaviors. Silly Behaviors. Endearing Behaviors. Puzzling Behaviors. Completely Inappropriate Behaviors.

So we choose to conduct an FBA evaluation to help examine these behaviors, identify triggers of these behaviors, identify the function of these behaviors, and formulate a plan to help address these behaviors in a positive way BEFORE they happen. District 742 conducted an FBA evaluation and they dropped the ball.

The IEP team met to discuss the FBA evaluation, but failed to provide a written evaluation for the team members to review. We were only provided with a verbal statement indicating that the FBA had found that Sandis’s behaviors were primarily sensory issues. Their solution? Implement gum.


I agreed at the outset, and began to request a copy of the completed FBA evaluation. Two weeks later I receive said evaluation. And I am appalled at how inadequate it is to have GUM as the sole pre-emptive approach deemed necessary by the FBA. I am appalled that we met as a team to review an evaluation that NO-ONE had. I am appalled by the actual evaluation itself as it OVERLOOKED behaviors such as crawling under tables and inability to transition. I am stumped by how it reads that Sandis acts out when he is unable to express his needs and emotions verbally, and the sole recommendation is gum.

I am disgusted.


And you know what I am going to do now?

I am going to request that the school district PAY FOR an independent educational FBA evaluation on the grounds that their evaluation is inadequate.

And I am going to get it.

Wednesday, April 25, 2007

Four Years

What does one accomplish in four years?

You can start high school and graduate high school in four years. You can earn a bachelor’s degree. You can remodel your house (but hopefully it wouldn’t take that long!)

You can also:
1. learn to walk
2. learn to talk
3. learn to run
4. learn to sing
5. learn to smile
6. learn to laugh
7. learn to yell
8. learn to sneak
9. learn to lie
10. graduate from a crib, to a toddler bed, to a twin size bunk bed
11. learn to take your clothes off
12. learn to put your clothes on
13. learn to make a humongous mess
14. learn to clean up said humongous mess
15. learn to hate to clean up humongous messes

It is absolutely amazing the amount of accomplishments that can be achieved in four years. Four years.

Four years.

My peanut is four years old today. Four years ago I gave birth to a deliciously chunky and sweet baby girl. Four years later she is a jazzy cute and outspoken four year old. And I’m curious, as I reflect on four years of our lives celebrated on this day….What major accomplishments do you know of or have you personally accomplished in the span of four years?

Monday, April 23, 2007


I’ve been having a hard time getting them.

Here’s the deal. We are going on a flight on May 3rd to Denver. And on this flight will be traveling two type 1 diabetics. This type 1 diabetic doesn’t feel real comfortable checking all her syringes, insulin pump supplies, insulin, glucometer strips, etc. There is something so very unsettling about checking all of my life-sustaining medicine and HOPING against all other hopes that the checked bag makes it to the destination. It is so much more comforting to carry all said life-sustaining medicine and equipment on to the plane with me so that no matter what happens with checked baggage, life is SUSTAINED.

The very basic instinct of life preservation is rearing its head here.

And I’m having difficulties getting individual labels for my supplies.

I order my insulin and syringes through a mail order pharmacy. Typically they label one big zip-lock bag for the insulin and only the box for the syringes. I’ve put in a few phone calls requesting labels, and each time I am assured that they will be sent.

And although I can not say whether or not they have been sent. I can say for certain that I have received none. This is not conducive to restful, stress-free packing.


Friday, April 20, 2007


I am fascinated with roads.

For as long as I can remember my relationship with the roads that network my city has been an intimate one.

Roads are not merely pavement, but rather the soul of civilization. Any town, any city, any metropolis, all are webbed with roads. Their very nature is largely a determinant of the feel of a city.

In Santa Fe the city map is on a triangle grid. This is odd in comparison to most cities, which are mapped on a square grid. Why is this so fascinating? In Santa Fe all roads in the city proper lead to the plaza, which is the center of Santa Fe. A square surrounded by commerce, people and filled with trees bricks and park benches. And all roads lead to this center. Their brick, their paved, their gravel….

There is a feel that can only be felt on certain roads. There is one such road in Saint Paul. Summit Ave. A road not just unto itself, but lined by roads. Centered by trees. Shadowed by great houses, accompanied by brick schools and beaten pathways. To run down this road is to feel the breath of the trees. To drive down this road is to bump from stoplight to stoplight, hidden artfully on corners. Runners flock to this road. The ambitious ones run up it. The more mellow ones run down it. The adventurous ones run on the mud path in the center of the island that separates it. Walkers flock to this road. Perhaps only to gaze upon the houses that guard it. A beautiful road.

My trip to work every morning is littered with roads, paths predefined and flecked with personal opinion. One road I meander up nearly every day is a narrow one, lined with ramblers rather than shadowing giants of houses, and flecked with occasional stoplights. I love the modesty of this road. I love the presumed quiet of this road. I love how it strips down through the heart of the city, you know, the heart of the city that only the people that actually LIVE in the city know of. This road effectively breaches all highways and major intersections yet cuts a most effective path from point a to point b. It is a quiet path that courses within a block of our day care, within a block of the college, swiftly past the elementary, and within a block of the post office. It courses quietly over the river with an unimpressive bridge and continues to lead from city to suburb on a most unassuming path. A quiet road. I love this road.

I have found particular joy in roads that cruise along on curves and along-side freeways. Only the folks that have truly found the city they live in know of these roads that best the daily traffic squabble. These roads are often littered and without sidewalks. There are no houses or signs that mark most intersecting roads, they simply unannounced travel from destination to destination, the navigator the only determinant of when these roads shall end. They travel under overpasses and unobtrusively over unmarked railroad tracks. They get you where you are going. They serve their purpose as a path that underbellies the typical traffic scheme. They are beautiful.

I do not feel as though I am part of where I live until I have made a connection with its trails. I cannot feel comfort in my city until I know the alternate route. The connecting path. The along-side alley.

Thursday, April 19, 2007

But I Think You Are Perfect

A few evenings ago I sat with Sandis working on his guided reading. This was a particularly challenging evening for me. I was tired. I was tired. Oh, and I was tired. Sandis was tired as well. He was fidgety, squirrely, and hoppy. He was disconnected and wriggly. The entire combination was entirely irritating and I responded with an entirely crabby demeanor.

I yelled. I hollered. I took a wonderful learning opportunity to calmly deal with my beautiful boy at his beautiful best, and I took it amuck and screamed at it.

A few minutes later, calmed perhaps by my screaming and disgusted with my own behavior, I took my boy on out of bed to have a chat.

BadMomma: How did you feel when I was yelling at you?
Sandis: I felt like I wanted to escape the house.

Pause here. How poignant can my six year old be?

BadMomma: I’m sorry I yelled at you. I don’t know what gets into me sometimes. I love you and I’m so sorry.
Sandis: I know but you know what mom?
BadMomma: What?
Sandis: But I think you are perfect. *kiss*

I am an eety beety teeny tiny little human soul in my world of regret smothered in love from my beautiful boy.

And you know what Sandis? (and Gracie for that matter)
I think you are perfect, too.

Here is to lessons that only our children can teach us.

Wednesday, April 18, 2007


I had an interesting morning. Interesting. Indeed.

I chose to do a site change at my desk today. In my cubicle.

Before I go on I’d like to explain that I have been a pump user for nearly twelve years. I have changed pump sites in varying places with no problems throughout those twelve years. What happened to me today has NEVER happened before. It was completely out of my realm of experience. Chalk it up to experiences well….experienced for lack of a better way to explain it.

Picture me as the jolly green giant, just less giant-ess than a real giant. I’m wearing light green pants and a dark green tank top layered under a lacey green v-neck blouse. I am green, and a fairly light and frilly green. I’m sitting at my desk taking care of the site change business. My desk is an open-ended cubicle. It is fairly private, we don’t have too many wanderers this time of day, so I’m not a spectacle for all to view, unless they choose to. I finish said site change and I look at my old site. I debate on whether or not to remove the old site. I decide to go ahead and take it off as I am confident in my new site.

I pull off the tape and out squirts blood, literally flying and splattering my cubicle wall.

“OH SHIT!” but not quite that quiet. If I didn’t want to draw attention to myself, well I’ve done it now.

Blood is squirting areterial style out of my tummy site, into my cupped hand. There is NO paper towels at my desk. And all I have is my PINK jacket to try and stop the blood. So I try and press it in with my fingers. Blood is pooling on the plastic inlay on the floor. A big fat pool of bright splattered blood. Anything I touch on the desk is streaked with blood. My hand is FILLED will a pool of blood. And my green pants, green blouse, and green layered tank are spattered with blood. And this blood is not stopping.

So I pull out my pink jacket and press down like I’ve never squished my tummy before. Praying no one will walk by my blood spattered and pooled open cubicle. Blood everywhere. Panicked.

I managed to stop the blood flow. I was left with a mess and a hand COVERED in blood, pants and shirt with blood pooled in various places. It is UNFREAKINGBELIEVABLE how much blood I lost from this stupid old site. I hid my blood stained hands under my blood stained pink jacket as I snuck to go wash off. I wrung my pink jacket out in the sink, red water rinsing free of my jacket, and tried to wash off what blood I could from my now more Christmas-like ensemble than jolly green giant ensemble.

Well this giant has just unsuccessfully battled a gusher.

Lesson learned? Leave the site in.

Sunday, April 15, 2007

New Shoes

My new accompaniment on this path that only my life follows.

Many, many miles will these shoes witness. My many hours. My many days.

Running in my shoes.

A softer path to jaunt along.

It seems a wonder that I never had these shoes before today.

Friday, April 13, 2007


Our lives have taken some pretty remarkable turns in the past few hours. It all started with our move. Our move to the beautiful townhome that is paces away from a playground, has a front door, and a room for each in the family. Our townhome which will serve as our new home beginning May 19th. Our new home.

Our move will literally move us into a different attendance district for schools.

Yikes huh?

That is pretty scary considering the amount of work and time I’ve invested with the staff at Sandis’s school. It is pretty scary considering the lengths I had to go to get them on board concerning appropriate services for Sandis. It is pretty scary imagining forging those bonds with a new set of staff. A new principal. A new special education case manager. New new new. New is pretty scary stuff.

You wise ones out there are smiling and nodding, and sighing under your breath that fortunately….Yes fortunately, IEPs transfer as is from school to school and from district to district. And yes, there is that sigh, that fortunately thing. But I don’t know this school’s staff. I don’t trust them. And I worry that they just don’t have the tools to DO what Sandis’s school right now is set to do. The new school is actually an older school. It is an older school that serves a larger student population with less rooms and less technology. They’ve got an uphill battle as it is.

Will they be able to provide a para for Sandis? Will they have someone who can do the number of pull-outs per day that are needed to adequately address Sandis’s sensory needs? How long will it take for them to truly understand the ins and outs of my boy? My precious boy?

And then after the questions, how am I going to tell Sandis that he is changing schools? What will this be in his little mind along with the airplane ride, move, and tonsillectomy anxieties that are already in residence up there? I don’t want to give him one more thing, but I don’t see a better choice.

You see, open enrollment at Sandis’s current school is, well, closed. I could certainly get an exception for Sandis from the principal, but that wouldn’t take into account the fact that Gracie will be starting kindergarten the following fall. And do I want to bank on the mercy of the principal for not just one student but two? And what do I do if they end up in two different elementary schools? That just isn’t workable. So we are moving on to the new (but older) school.

And ya know? Somehow things just manage to work out. This new (but older) school starts at 8:30am rather than 7:30am. Taking into account that I start work now at 8am, I have to find morning day care for Sandis that is in his new attendance district so he can bus from there to school. Just so happens that his OLD day care (before the day care that he went to before he went to school) is in the bussing district. And they can take Gracie too. And they are totally cool with diabetes, autism, and leg/hip/ankle braces. I loved them when we went there, but we left because they were too expensive. But you know what? God works in awesome ways because Congress passed a bill last year that allows daycare assistance to pay 15% more to accredited facilities than to other daycare facilities, which, well, makes them just as affordable as any other place on the block. Awesome. And you know what else? That means that I can change my shift at work from 8 – 4: 30 to 7 – 3:30, AND I can start running in the afternoons again. As early as mid-June.


So ya, I have some more paperwork and I have some more meetings and I have one more thing to layer on the boy and the girl. And I get to do it all in MAY.

Holy shit huh? I manage to fit all of my life’s major positive stressors into one freaking month? How do I manage to do this to myself?

…. airplane ride, final IEP concerning para, tonsillectomy/adenoidectomy, MOVE, change schools, change day cares…….

May has GOT to be the month to buy a new car…….(while I’m at it…)

Thursday, April 12, 2007


Past guys have been on my mind a lot lately. Can’t say why. Have you ever been driving (driving is the ultimate past-time and one I spend way too much time doing immersed more in thought than in driving) and thinking at the same time? Wading through your past experiences when something, not a new realization, just a new way to look at an old experience, hits you? And you are stuck musing through your left turns, red lights, accelerations and lane changes?

So lately I’ve been thinking about guys I used to know. Guys from my teenage years. Perhaps I’ve hinted some, but my teenage years were rather tumultuous. Most of that was my own doing, or rather, undoing. I knew a whole slew of less than wholesome public (or less than public) figures. I think I get stuck in that time period of my life because sometimes it is hard for me to believe. That and it is just so damn different from anything I would ever dream of incorporating into my life nowadays.

Guys I used to know. Guys I used to date as a teen. So I was 16 and totally head over heels for this TWENTY-NINE year old. I was 14 and I kissed a THIRTY-TWO year old. Now this is by no means meant to be a kiss and tell, but honestly, as I am turning 29 this year, that just icks me the hell out. What the hell was I doing dating a 29 year old at 16? What the hell was wrong with that guy? (No blame for me on this one, I had not the tools to pick a decent man, and I was seriously misled by what I realize now were some obviously sick souls.)

When I was eighteen I was just breaking up with my boyfriend of 3 years (off and on) who was at that time 24. That means when we started dating he was 21, and I was 15. Fifteen. Twenty-one. Need I say more? I remember wondering why I never had a decent romantic relationship. I ignored the obvious fact that I had chosen to date only men that had clear issues (as dating children is a readily apparent violation of social mores, eh?).

I’m sure I’ve always known this fact, but only recently has it started to kind of gross me out. Grown men. Children. Girls pretending to be women.

The fact that I was a child at 14, 15, 16, 17……These are indisputable facts. Hell the fact that I still acted as a child well into my twenties is also an indisputable fact. And I just can’t believe these guys, that somehow they felt it was okay(acceptable), and imagined that I would somehow stick with them, date them, love them, in any way that is appropriate and understandable.

I don’t think that making choices as bad as I made as a teen concerning men are inevitable choices. It is just a shame that there is even a choice, that there are men out there that just don’t understand the unacceptability of dating girls that act like women.

You can look like a woman. You can act like a woman. But sometimes, no matter how much you pretend, the only way to womanhood is taking the time it takes to get there.

Wednesday, April 11, 2007

Tomorrow's Hope

There is always so much hope embedded in tomorrow. And why is that? Why are hopes not realized today? Perhaps they are and I am missing them? Why is hope so firmly entrenched in the future? Is this a basic flaw of personal outlook? Finding hope in the future rather than the now? What happens if I die and all my hopes are set in the next days work? That would be unfortunate….

Unfortunate indeed.

It is difficult to fathom the blessings that have fallen literally into our laps. I just can’t stinkin believe how our life has been paved, literally, by the hands of God. When has your life been paved? When has your way been smoothed? When have your tears been wiped away by the mercy of others? When has relief been found in things that may seem so small to one person but overwhelmingly huge to you?

We have had so much fear in this past year. There has been so much uncertainty…and yes, sometimes I wonder why me? Why me? Why was I chosen to deal with these things? Why not someone different?

I am faced with these challenges and yet I have been given all the tools I need to find hope, joy, and love amidst them. Why not me? Why would I think someone else is better suited? I am perfectly blessed for the opportunities I have been given.

Autism is my opportunity to learn compassion and patience and find joy in everyday life. Diabetes is my opportunity to learn humility,

Compassion. Patience. Joy. Humility.

Are these things important?
Are these things that I will use to build hopes and dreams into today?

Life is not tomorrow, it is TODAY, right stinkin now. I need the hope, faith and peace I find in the joys of today. The joys, ah the joys, I’ve been given.


Monday, April 09, 2007

May Madness

I have been one busy llama. Yes indeed I have. Today I put down my security deposit and first month’s rent for our new home (perhaps pictures to follow one of these days?) We aren’t scheduled to move until May 19th, but me as the ever organized budgeteer (no, not budgerier (isn’t that a bird)) I’ve managed to set that money aside in order to be done with it and move on to more important things. We have one hell of a month coming up, and it gets my stomach in knots all over about it.

May 3rd – May 7th we fly to Denver to celebrate my mum’s graduation from university with a nursing degree. She will graduate a few days before her 55th birthday, and she has worked long and hard for this degree. I also haven’t seen my mum in around five years, so this is a visit that is long overdue! While in Denver, Bob the kids and I will have some up close and personal time with my sister and her husband and my little niece (the precious emma!). By up close and personal I mean we will all be crammed into their living space in a sleep over kind of fashion. Do you think I am imposing? It will be fabulous and overwhelming and wonderful all at once. ALL.AT.ONCE.

May 19th I plan to move into our new townhome. Yay! That means I have exactly four weekends total to get ready for this move thing. Damn. It may as well be tomorrow.

Oh, and then May 22nd? Have I mentioned that date yet? Mmmmhmmmm. Three days after our move mister Sandis monster will have his tonsils and adenoids removed. I am nothing if not time-effective, wouldn’t you say?

Yeh….Something like that. So we have a crazy month ahead of us, and me? I’ve been up in arms packing whatever the hell we don’t urgently need to make my stress level concerning impending move like, go away. Is that possible?

Now I have known all this was going to happen, and honestly, I WELCOME it. Good-bye shitty two bedroom unsecure apartment! Yee-ha! Seeya! I’m so totally like NOT even cleaning you when I leave! Good-bye mr Sandis monster tonsils that have my boy sick every other week! SO TOTALLY BE GONE!

But still, despite all this joy and adventure, it is fucking stressful.

Did I just cuss? Meh, …….I don’t even know what to say about all that.

Sunday, April 08, 2007

Taking A Look Back...

Last Year

This Year

So we've had some candy, some Jack Sparrow, some stickers, and a side order of chocolate puke. It's been a good Easter here, and yet another year in the Rittmann household.

Have a Happy Easter Ya'll!

Friday, April 06, 2007

You Asked, I Answered

A big thanks to Julia for sending me these questions !

1. What does blogging do for you?

This place, this blog, is where I go to work everything out. This is where I go to feel sad, to feel desperate, to feel powerful, to feel confused....Most of what I deal with on this blog concerns my children, an arena where I am forced to be always calm (haha, well kind of like always) and maintain that for my children. I don't get to shed those tears out in the real world, so I come here to understand how I feel and work it all out. When I started this, I really really wanted to share my experiences with diabetes. I never ever expected this blog to journal my daughter's diagnosis with diabetes, nor to chronicle my son's autism. I never ever imagined. This is where I feel however I need to feel.

2. Do you have any tattoos? If so, what of and what do they represent? If not, would you?

hahahahaha....I have a very small red DK (Dead Kennedy's, old old punk rock band, can you say Jello Biafra?) tattoo on my upper left arm. It looks like a pen mark. It was a homemade tattoo done by a long gone very creepy ex-boyfriend. Other than that, I'm not intrigued enough by any one thing to want to put it on my body for like, ever.

3. If you could live anywhere else in the world, where would that be?

Oh Canada! Don't ask me why, the reasons probably don't make much sense. That being said, I'd still want to live in Canada, say....eastern Ontario?

4. Is there anything you regret not doing when you were younger?

I don't have too many regrets concerning things I DIDN'T do, but I have a whole lot concerning things I DID do. Man was I one crazy kid. But, should I choose one thing, I would say not finishing university. I wish I had.

5. Money being no object, where would you go on vacation and with whom?

If I could take my family for like a month or two to northern Alberta or barring that the Kodiak then I would jump at the opportunity. I would love to be surrounded by nothing but beautiful land....

Now I've seen these questions travelling around the OC, but should you happen to be one of those that has not yet been served a set of questions but would like to be still, then leave me a comment and I can send you a few of your own questions.

Have a happy easter ya'll!

Thursday, April 05, 2007

April is Autism Awareness Month


My son.


All of him.

Autism has touched my life through Sandis.

Sandis is joy. He is smiles. He is boogers and ice cream and tongues. His name means festive or joyous. He brings joy to all around him.

Bob once in conversation with my auntie told her: “Sandis can be frustrating at times, but in the next instant he does the coolest thing, and you forget about that frustration.”

The coolest things. My son.

Sometimes it feels like the world and autism are in conflict. Big, loud, bright stores. Bigger, louder, brighter people. Pre-defined concepts of normal.

Sandis is festive and joyous and beautiful and he has autism

What do I want people to know about autism?

My son smiles. My son loves. My son talks. My son runs and jumps. My son laughs. Sometimes my son laughs at you. My son is a child and he is beautiful and he has an autism spectrum disorder. Autism is not always what you expect and it is never what you expect.

You have now met one child with autism. You have now met one mother who has a child with autism.

We love and we are loved and we live and we experience life in the same ways that you do, sometimes it just looks different.

I invite you any day to walk with us on our path and see what it entails. It is a journey we never expected and never asked for, but in many ways we are blessed to have. I can not say all families that are touched by autism would feel this way. I can only speak for my family. And we have found love, joy, happiness, festiveness, acceptance, patience, and then even more love in our journey with autism.

Our journey with Sandis.

One of the most wonderful and blessed journeys of all.

Wednesday, April 04, 2007


“This is it! I can’t take anymore!”

- and somehow somewhere down the line, we do.

“Our budget can’t take anymore hits. It is too tight.”

- and later in the week, it does, and we make it, sometimes with some to spare.

“I’m too tired to go on, I can’t imagine how I’m going to get through today, I’m too tired!”
- and yet here it is the next day, and somehow we’ve made it.

Invisible limits. The limits we put upon ourselves. The limits we put up when we are feeling overwhelmed. Our personal limits.

Do you know what the mathematical definition for a limit is?
a. a number such that the value of a given function remains arbitrarily close to this number when the independent variable is sufficiently close to a specified point or is sufficiently large. The limit of 1/x is zero as x approaches infinity; the limit of (x − 1)2 is zero as x approaches 1.
In people speak (non-mathemetician talk) it is approaching “something” without ever actually getting there, where the “something” is the limit.

Things add up, life adds up, and we always think we’ve reached our limit. We always express how we have, but we rarely do. In fact, if anything, God made us humans fairly versatile and to that versatility are the added joys of his many blessings within our lives. It’s amazing how a simple mathematical concept like the limit can so accurately be reflected in our own lives.

I don’t want to set anymore invisible limits on my life. I don’t want to have fear as I approach that “something” or that “limit”. I don’t want to predefine how far I can go, or how far my children can go. I know that there is no limit, or rather that the limit is unattainable. And somehow, somewhere, I am finding a whole lot of comfort in that idea.

Tuesday, April 03, 2007


Sometimes I just am. I called Bob in tears last night because I felt so ill, and I begged him to come up. He did, the wonderful man he is, and helped me get the kids to bed. What did we wake up to? April snow showers. I am finishing my final month as a caretaker after taking last month off. I had agreed to help for one extra month so they had more time to find another caretaker. I’m not looking forward to shoveling with a fever.

My sadness though really started at work. I have several FMLAs at work, to help ensure that I keep a job. I have one for my diabetes. I have one for my daughter’s diabetes, and then another for her joint and muscle issues. I have one for Sandis’s autism and one other for recurrent strep throats (which is culminating in tonsillectomy/adenoidectomy on May 22). That is five FMLA’s and a whole bunch of time missed on my part. I do my best to schedule therapies at the end of the day or first thing in the morning, but sometimes I need to miss more than others. I do my best, and I am honest about the time I miss.

Today our HR director talked to me as she had been reviewing my FMLA file. She had some questions about Sandis’s sore throat FMLA, commenting that a sore throat does not usually indicate FMLA coverage, as that is just common childhood illness. I explained to her Sandis’s recurrent problems and how it resulted in an ENT referral and now a scheduling of surgery. I emphasized how it is NOT just a common childhood illness, as most children don’t have strep throat or some other type of severe tonsillitis once a MONTH. Some of the notes written by doctors didn’t reference the FMLA completely correct, so I had to explain to them why these visits fit into the FMLA standards. Then she had a question about a note from a doctor (Gracie’s endo actually) that Gracie had the flu and that I needed to stay home with her. The HR director told me that the flu is not an FMLA related condition. I explained to her that the note is written by Gracie’s diabetes doctor and that it does apply to her diabetes FMLA because it causes her to have high ketones and high blood sugars that I need to monitor. She then asked me if any illness Gracie has would fall under FMLA (trying to understand? I don’t know.). I told her that if the illness causes high ketones, then yes, it should fall under FMLA, as I am staying home with her not only to care for her illness but also extra care is required for her diabetes.

I have missed so much work in these past few months; I guess I should have expected this talk. And although I should have expected it, it still felt crushing. Everyone was very nice and seemed very understanding. I just struggle constantly with the fear that this job will see fit to lay me off, as I have to miss so much work. I don’t know what I would do without a job. I try very hard to be here, but sometimes, I just can’t. I just feel icky about the whole thing.

So I left in tears, upset about the whole thing, to my desk to write this. I wish that things weren’t like this. I wish I could work 40 hours a week. I wish things were different. But they aren’t and they never will be. Time to let this fear of losing my job thing pass. There is nothing I can do more than I am doing already. What will be will be. And we will continue to be, regardless..

Monday, April 02, 2007

Not Feeling All that Hot

So a little over a week ago Sandis was experiencing the icky sickies. Well, since icky sickies require lots of additional mommy hugs and kisses, mommies often retain said icky sickies for themselves a little later on. Ah…Such is life.

So I have this icky throat thing going on, not strep that I’ve heard, but it feels as though my throat is lined with pricklies and sticklers rather than the smooth unfeelingness it normally is. On top of that, I managed to acquire pink eye, which I think has at this point spread from the left eye to the right.


Double Sigh.

I hate being sick. I was blessed this weekend with Bob being at the apartment. He let me sleep and sleep and sleep. And I was not much more than crabby when I was up and around. Feeling terrible, it is my duty to make everyone else feel terrible. Bob also bought some crazy nerf guns (can you say semi-automatic fire?) for himself and the kids, so in my bleary-eyed sick state, every time I ventured out of the bedroom I was assaulted by enemy Velcro darts.

If I hadn’t been so icky sicky it more than likely would have been amusing. As it was, I did all I could to rain on their parade. Sometimes I really hate myself, as sicky is no excuse to be nasty to those I love.

I did manage to make it to work today, but under duress (I have no vacation or sick time, and this does not count as FMLA, thus the duress.) I will later be seeing the doctor so in some senses that is my slim consolation for feeling so icky at work.

As a side note, and a joyous one at that, we had Sandis’s PCA assessment today. A PCA is a personal care assistant that can help with daily functional skills and also can help get your child to and from therapy appointments. Most commercial insurances do not cover PCA services, BUT Medicaid for children and adults with disabilities DOES cover PCA services. And ya know what? Sandis qualifies for PCA services, and the public health nurse would like to get him qualified for 2 hours a day. So that would be a total of 60 hours a month that I could schedule PCA care for my son however it fits our schedule best. I’ve been waiting on this for quite some time, and I still do have a short while before I am actually able to use the PCA services, but we are nearing the finish line.

There is one thing that I have learned throughout all of the trials and changes my family has been through in the past 8 months.

If you do not ask, you will never receive. If you never acknowledge that you need help, you will never acquire the resources to get that help. Appeal to those who can help you, and if they cannot help you, ask them if they know who can!

Highlighting my son’s weaknesses has been hard through all of this, as I have asked for help again and again. I asked for Medicaid. I asked for SSI. I asked for respite care. I asked for PCA services. I asked for help with Sandis’s IEP.

The one constant is I asked for help. I asked again and again and again. There is no shame in not being able to do everything independently. There is no shame in needing help. And there is so much joy and accomplishment you can expect once you receive the help you need, and you see expectations and dreams met and then exceeded.