Tuesday, September 30, 2008

Halloween at Walgreens

Dear Ms. Walgreen Worker, 

Although it might be your job to stock shelves full of dark, creepy death-like halloween junk to celebrate the coming holiday, it is NOT your job to hold my two year old's hand and try to teach her to not be scared. So, the next time you think you are doing a public service by encouraging a little girl on to the dark side and cheering her on to press the blood red buttons of the death reaper so it's eyes pop out as he growls in harmony with the other creatures from the dead in the shopping isle, remember that this little girl is not yours to expose whatever you might think is the right thing to do. 

I am my little girl's mommy. I am the one who has to get up and sprint to her room at 2 a.m. when she has night terrors every night since our Walgreens outing. I am the one who is trying to mold her and teach her about good and pure things. She will learn about what you are trying to teach her as her friends and the TV will expose her to the dark side soon enough. Until then, I want to keep her from aisle 666. Mind your own bizwax lady! We will take some candy corn though.

Thank you.

Monday, September 29, 2008

My Mom's Voice

"Hello my darling Andrea!"
was the last time I heard my mother's voice. She left me a message on my cell phone and I was checking old messages to clear my mail box out when I first heard it. It had been a few days since she had passed away and I remember sitting in the van, a rainy day in March, playing it on my speaker phone over and over. "Hello my darling Andrea!" I wept from the depths of my soul.

I hope the sound of her voice and her cherished words remain in my memory for years to come. It is one of the few fond memories I have chosen to keep. "Hello my darling Andrea." The sound is sweeter than church bells playing on your wedding day.

Another sweet sound of my mother's voice I can hear from my memory box is from the message she had on her own answering machine. It went exactly like this, "Hello. Neither Tom or Almeda are available to take your call. We do have a clever machine that will do so for us. Please leave your message, time and day you are calling and we will be sure to return your call just as soon as we can. DeColores and Shalom."  

I used to tease her about this message. She was so sensitive and she'd get upset. God, I miss my mom today. It has been a long time since I have thought about her. It has been 18 months since she has passed away. The first year I thought of her daily and cried often. Now, there are several days that have gone by and I forget about her. For some reason, just now, I heard her rich voice say, "Hello my darling Andrea." 

Hello Mom. I miss you. I love you.

Mondays and Oatmeal

Fred and I had a date yesterday that spilled into later in the evening. We took a bus trip to Chicago to see the symphony and it was inspiring! I thought of a lot of themes, stories, blurbs and visions to write in the future posts of my blog.

But, I'll start with today. It is Monday. It's a foggy grey here in Laketown and although we thoroughly enjoyed our 12 hour Sunday date, we came home last night to a messy house. Albeit, the girls were both sound asleep so that was a relief! There were just a lot of crafts all over and the dishes were glaring at me as if they were about to fall like Jenga blocks in the sink. It isn't how I would like to start a Monday morning.

Sarah woke up very early, although, I am not sure the exact time because, for some reason, all our clocks in our home are 5 - 30 minutes different from one another. I feel like I am living in a Twilight episode and for some reason, I think I have some odd handicap that won't allow me to fix the clock problem. So, I live day to day, complaining about it to Fred and never knowing the actual time. So weird!

Sarah awakens dark and early, the sun not even awake. She comes to me in bed and says, "I hungwee Mommy." I blindly find the remote control to turn on the Disney Channel in hopes to get a couple of more snoozes. Hearing a whiny nosed clown talking about being nice and exercise puts me in between sleep and hell, but nevertheless, I gently fall back asleep. Sarah then has me help her pull her sumo-sized diaper off and she jiggles as she runs to the bathroom to, what I hope put the dirty diaper in the trash. Instead, she puts it in the toilet. Oh joy. I hear the flush and realize with one eye open what just happened. I think, I could get possibly one more snooze in before the water actually drips over, and then I hear, "I hungwee Mommy!" with a hint of more enthusiasm and urgency.

I decide to put my feet on the floor and waddle to the bathroom. I realize thankfully that the diaper made it's way into the garbage can. I must have had a nightmare that it went swirling in the toilette. Perhaps it was just a foreshadowing of what was to come on my Monday morning.

We venture downstairs. Sarah is standing on her princess stool at the counter with a spoon, a bowl and a package of oatmeal all waiting patiently for me. We make the oatmeal and before I blinked, Sarah was angry about something and flung the bowl like a frisbee into the front room. The oatmeal gooped all over the carpet and seeped into the fibers before I could manage to put Sarah in a time out and get a towel to wipe up. Two minutes, ten tears, and one more package of oatmeal later, Sarah is sitting happily, eating her curds and whey.

What more joys of life with our Monday bring? Stay tuned!

Thursday, September 25, 2008

Another Weighty Issue

Since I could remember, after every birthday ritual of blowing out the candles or tossing a penny into a fountain or blowing a fallen eyelash or ladybug or wishing upon the first star I would close my eyes and combine my wish with a prayer. I would say, "God, I wish to be thin."

With all of the struggles I have on my plate, the fiercest of all conflicts is the one that I have been fighting with on a daily basis my entire life. That is my weight. You may recall reading my post titled, Confessions of a Second Grade Closet Eater,
where I discuss my life since the age of eight, and how food was always a battle for me and accepting my body as is has always been a struggle for me. I have always denied my real hungers to the point that I find it difficult to recognize it anymore. I have tried so many different diet strategies that my body has finally decided not to play with me. Like playing tic tac toe, there comes a time when no one wins and it just isn't worth the time or devotion to play. 

Five years ago, my daughter Sienna turned two. Right after celebrating her birthday, the fanfare and family left to go home, Sienna went to bed and I sat on the couch with my husband, Fred. I was tired but most of all, I was sad. When I was two, my parents divorced. I thought about how tender and sensitive of an age my daughter was in and I couldn't imagine leaving her. How then could my parents have split me in half, my life and my heart at the tender age of two? I felt so much sadness about this, that I slipped into an emotional coma. This depression was too great for us to handle alone and Fred and I decided that I should get some intensive therapy, once and for all we thought. 

It was also at this time that I had been trying to diet and get healthy. It had been two years since I was pregnant and no matter how much I denied foods and increased exercise, I could not get below 200 lb, let alone 230 lb! I was even following a new diet based on fasting and praying that I was learning from an extremist view about fasting from Stormie Omartian in a book titled, The Power of a Praying Woman. 

I became very dedicated to this methodology. Earlier that year, I fasted for three days. I didn't eat any thing in hopes that God would hear my cry and help me to lose weight. In fact, I didn't pray and dedicate my fasting to be self serving alone, there were other prayers and petitions I offered to God during this time too. But, at the core of my desires was the need to lose weight. For I believed that if I were thinner, all my problems would be solved. I now look back and cannot believe how immature my mind set was then. And, by the way, that three day fasting fiasco left me with a week long migraine and a dark night of severe body convulsions and throwing up. I do not recommend this exercise, nor do I believe many professionals would recommend anyone to try it either.

We then decided that I should take a brief leave of absence and take some time for myself at a nearby out patient clinic. This was a Christian clinic that helped others with depression. During that time, I learned that I was struggling with a lot of loss. My daughter at the age of two would not engage with me and was so difficult that I had decided earlier to put her into day care and go back to work full time. Also, my mother had been so challenging and disrespectful towards Fred and me that under the recommendation of my small group from church, I had to place some boundaries. These boundaries led to another period of estrangement with my mother. I was at a point in my life that I was not able to bond with my daughter or have a relationship with my own mother and I was so depressed that I wanted to just drool sometimes. I also had a secret death wish and would try to drown myself with Big Macs and fries chased by Snicker bars and Cokes. I had ballooned to a 250 lb wearing the same sweatshirt every day that was a size 3X. My daily drives to the clinic lasted for four weeks. Afterwards, I still met with therapists and took medication but I had gained so much insight about how to manage my life and cope with stress.

One major stress in my life that I learned through my time there at the clinic was that I had a life long eating disorder. I didn't think I was "good enough" to be a successful anorexic or bulimic. I joined support groups for this and met with a nutritional therapist weekly for a little bit over a year or so. During my therapy sessions with Iris, she would instruct me to eat, or refuel my body every three to four hours with whatever food I wanted. I needed to stop giving certain foods power by labeling some foods good and some bad. Moreover, she instructed me to learn to love my body. She once asked me, "Who do you think you are? God created your body to be just as it is and you are always trying to reshape it and recreate it. Maybe God created you to be a larger woman. What is so wrong with that?"

Every week, I would talk to her about how difficult it was to find clothes that fit me. She would tell me about her very tall husband who also had difficulty. I would tell her about the stress of my business and travel and how challenging it was for me to eat in public. She would help me through every case scenario. She would weigh me in every session but would not allow me to see the results. I was able to get down to 230 lb not dieting through restricting my eating or adding exercise, just by trying to trust my body and love it. 

I eventually stopped seeing Iris when I discovered that I was pregnant with Sarah. I also decided that I had a deeper desire to be successful in my career and she recommended that I see a business coach to help me build my company and career instead of meeting to talk about my weight. It has been about three years since meeting with Iris. So much has happened with my career since then, and with Sarah and Sienna and with all of our lives. One of the reasons we made the decision to move to a rural midwestern town was to simplify our lives so I could be a better mommy to our girls. Also so I could give myself the self care necessary so that I would not end up dying like my mother did at the young age of 62. 

Now, I struggle with my weight. Not so much because of the superficial reasons that kept my weight such a struggle from age eight to early 30s. I now struggle because I have been running, walking, bike riding and being very active. I try to eat healthy foods. And, with the increased activity levels since moving here 18 months ago, I find myself with an enlarging tummy, looking as if I am pregnant. I am trying to figure out how to get healthy with out struggling with diets and the slippery slope of obsession that spirals me into yo yo dieting. 

I think I will schedule to visit a doctor about this. I fear that he will just put me on a strict diet though and it will awaken that diet monster that has been hibernating for the past five years!

Wednesday, September 24, 2008

"School" of Thought

I had a quick meeting scheduled yesterday at 3:05 with Sienna's teacher to talk about the tasks I needed to help with on Thursday afternoons when I volunteer in Sienna's class. So what that meant is that I would wait until Sienna rode her bike home and then we would just cross the street together and head over to Mrs. Banna's class.

But, Sienna didn't know we had this meeting scheduled. And she obviously didn't want to go so she tried pulling her retaliating, stubborn, "I'm not going and you can't make me" routine. After trying to negotiate, I did the 1-2-3 and then picked her up and carried her across the street. I put her down, she froze in place. Sarah, obediently walked along with me, we would both take a couple of steps, look behind us and then do the whole negotiate-1-2-3-pick-up to cross the school drop off drive way. I think I had to do the routine one more time before we were on the sidewalk safe haven. 

There were about 20 random kids and adults lingering around the front doors. All eyes were on us. I felt so judged and ridiculous. I was so angry at Sienna. Frankly, if it wasn't Sienna throwing a fit though, it probably would have been Sarah. It is just a little less publicly humiliating carrying a two year old than an almost seven year old. As we approached the front doors, the aid who normally holds the doors open for the kids both before and after school stood there whispering to another aid who has made inappropriate comments, although possibly misunderstood I have now come to realize. I saw them in one another's ears and more rage filled in me although all I could do was squat to keep Sarah's attention focused on just walking in the doors. She is so distracted by so much. It is a full time job getting eye leveled and helping her to move forward, both in day to day activities and development issues. 

I am hoping that Sienna is following us not caring if she stews or not. "Please do not make a scene today please do not make a scene today," the thoughts were telling one another in my mind not realizing that we already had put on the public show and entertainment just a few minutes earlier. Must have been in denial.

Then, one of the aids leans towards me to say something that soothed my soul better than chocolate on a rainy day. It was as if I were entering into the pearly gates and John, Peter, Paul or Gabriel or whoever that guy is who is apparently standing at the gates of heaven leans over to me and says, "We feel so sorry for you. We don't know how you do it!"

WHAT? I thought those aids were the biggest judges of all of the school personnel towards me! They are the reason I detest going to that school. They represent the entire school to me, the same 'school' who doesn't see anything wrong with my child and who claim it is all poor parenting. These words were like music engraved on my heart. I think I might have even flinched and said something like, "Seriously? I thought... well, I didn't think you liked me." Lame, I know. 

And, a tear welled up in my eye. I wanted to hug them and take refuge in that moment. I pulled it together as soon as I saw the vice principal. I didn't want him to see me teary eyed. I had to look like I was in control, somewhat professional.

It was a blessing. Encouragement. It was exactly what I needed, just some support and understanding. I wish I had more encounters like that to report!

Tuesday, September 23, 2008

Thank You Sarah

Thank you Sarah.
Thank you for spreading your smile. Your smile is beautiful enough it could bring world peace. The way you show your teeth and your cheeks lift up your ears, even your eyes smile. It is contagious and no matter how I might be feeling at the moment, when you smile, I can't help but hear angels in the room!
Thank you for moving your Princess chair over to the CD player and putting in DeeLight, taking my hand and dancing to "Groove is in the House" with me every day.
Thank you for the way you lift your soft chubby shoulders up and down while you dance.
Thank you for covering your beautiful face with your teeny hands and playing peek-a-boo with me while you are in your car seat.
Thank you for your wonder and amazement as you play with flashlights and magnifying glasses.
Thank you how you look up to your sister even when she isn't very nice to you.
Thank you for saying sister like you do, "Seetuh"
Thank you for screaming for joy when the rocket appears on Little Einstein's.
Thank you for your hugs and sad, "I'm surree" after you serve your timeout.
Thank you for naming the blanket I made and calling it your blankie even though I never finished it fully.
Thank you for your voice and how it sounds when you talk and sing.
Thank you for loving to paint and draw and play with play dough.

I love you Sarah.

Monday, September 22, 2008

Invitation Part II

Yesterday after church Sienna and I were cleaning up after lunch. I asked her if she got to talk to her friend Alice at church. Alice is a tiny little sweetie, quiet and tender hearted and every time I see Alice I can tell that Sienna and Alice have a special friendship. I don't know too much about Alice because Sienna doesn't say much about her.

I usually will try to ask Sienna about her day by asking things like, "Who did you sit by at lunch?" or "Who did you play with at recess today." And, I know they are friends because she usually replies with either, "Alice" or "no one." I have tried to invite Alice over for a play date but her mother seemed over protective. I thought perhaps it was because I asked too early last year while the girls were in Kindergarten. Alice was a no-show for Sienna's pony party last year too.

Yesterday, I saw Alice walk in the church with her mommy and as she looked over at Sienna, her eyes danced and she smiled and tried to wave but she was still holding her mom's hand. I could tell that brief engagement soothed Sienna's nerves if only for a minute while we were newbies in a new church on a new morning of new routines for Sienna. So, after lunch yesterday Sienna was telling me that Alice talks about her mom a lot. I tried to pry a bit, "Is her mom nice?"

Sienna tried brushing this conversation off. But, for the first time I got her to start talking and I was NOT going to back down! "Does Alice not like her mommy?"

Sienna shrugged, "No, her mom doesn't like me."

My eyes widened. I tried to maintain my coolness as Sienna can pick up on any of my excitement or anger and she easily shuts down so I froze while she continued. "She thinks I am mean to Alice. That is why Alice can never come over to a play date or my party." Then, she pretended it didn't bother her and ran off to make homemade parachutes for her Pet Shoppes toys.

I on the other hand felt the weight fall on my head like I was in a Road Runner cartoon. My eyes turned into number signs and smoke came out of my ears.

How dare that mom not allow our girls to be friends. Can't she just give them a chance? Alice is the only girl that I have noticed that really loves and accepts my daughter. I am sure that Sienna has shown her true colors and has probably gotten easily angered towards Alice but Sienna also has a plethora of gifts and she can be warm and kind. If Alice's mom understood what our struggles were I wonder if she would work with us. Should I call her mom and try to set up something organized? Should I say by-gones and let time take it's course.

Deep breath. One day at a time.

Sunday, September 21, 2008

Sunday Scribbling: Invitation

When I hear about someone having a birthday party I can't help but wonder why my daughter didn't get an invitation. It is always an awkward conversation too. It is like my friend will mention something that happened at the party assuming that we knew about the party and then once she sees the look of surprise on my face she'll try to change the subject. I try to act all nonchalant but inside it nags at me. It's not like it has only happened once or twice. She is in the first grade and I know of at least four instances where Sienna was not included to a play date or party of some sort.

What is wrong with you people? Do you think that my daughter is too hyper and she will be disruptive? Are you worried that she is contagious? Don't our kids connect? Does your child not like my daughter? Do the parents not like me?

But the most bitter thought I have is: Does my daughter know and does she care?

Because, if she doesn't care, then that means that she is oblivious to the social scene. Part of that notion is OK, but part of that is a problem because it is like she doesn't connect, or attach to friendships. I know she is lonely.

So, if she does care and she knows about the party her other classmates were invited to but she was not, then how do I explain that to her when I don't even understand?

Sure, I can pretend it doesn't matter and try to redirect her. But she is very intelligent and she will see right through me.

Her birthday is coming soon. Last year, she invited her entire class plus other kids too. We had a pony rides in our back yard. Maybe I went overboard. Maybe that is why the kids don't invite her because they think we are show-offs. I don't know.

I do know this. I want my daughter to know that she is loved and welcomed. I want her to feel like she is part of a group other than her own family. I want her to have sleep overs and send notes to her girlfriends between classes. I want her to get invitations to parties and play dates. I want her to enjoy her childhood.

Friday, September 19, 2008

Tantrum: Typical or Not?

Most of the time I have no idea why my daughters start a tantrum. It is usually only in hind sight, I can hypothesize what led up to the tantrum although, I never know accurately why or what instigated the revolting reactions known as The Tantrum.

Before I go on, let me clear up what I am talking about when I say tantrum. Because, a lot of kids have tantrums. They usually throw them when they didn't get their way or maybe when they didn't have enough sleep or are hungry. And, to a stranger, that is what our daughters' tantrums might seem like at the moment. But please, let me elaborate.

Let's take Sienna's tantrum from this evening as an example. Sienna came home from first grade, just as peppy as could be. We got out our Halloween decorations and started placing the pumpkins and scarecrows throughout the house. She was bright-eyed and spunky and at about 4:00 or so, she asked if she could watch some TV. I said no problem and off she went to watch some Hannah Montana.

It was time for dinner around 5:00. We typically eat at the dining hall where Fred teaches school. Fred quietly and gently announced to Sienna that we would be leaving for dinner in a few minutes and then, What? What just happened?

Sienna starts screaming. She normally loves to go to the dining hall for dinner but for some reason, tonight, she started screaming, "NO! NO! NO! I don't WANNA go to the dining hall. I don't WANNA go to the dining hall. NO! NO! NO!" Fred walks away and finds me. We both are shelter for one another when this sort of thing happens. I asked him with sarcasm, "What did you do to her?" He replies, "I just told her we were going to dinner." I could hear her wailing upstairs, screaming the same phrase over and over. I think that she could be in a heavy metal band with those lyrics. Do they even still have heavy metal bands? I digress...

So, I walk upstairs. I think I can help. WRONG! Nothing I say works. In fact, she tries to kick at me and misses my face by a chin hair. Not that I have chin hairs, I don't.

I walk away, reminding her we will be leaving in five minutes. I also remind her that going to the dining hall isn't a choice but how she behaves is a choice. "Do you think you are making the right choice?" Uh-Oh. Now she's pissed. She crawls after me like I am prey and tugs on my shirt as if she wants to fight. I calmly remove her hand and tell her that I will see her in the van. I tag my husband to take on the next phase with her while I get my other daughter shoed and place her in her car seat. We then wait inside the quiet and safe van. The door to the garage flings open, I think Sienna kicked it open. Fred is carrying her to the van. She is screaming, arms and legs flailing all around. We pull out of the drive way. Same as it ever was... one of my favorite sayings from a Talking Heads song bounces and mumbles around in my brain. These thoughts humor me while I hold steadfast to my own sanity.

I press the button on the sun roof to close it. Her screaming can penetrate through the body of the van and our neighbors don't need the sun roof opened to make the acoustics more clear. Thankfully, it is a quick two minute drive. Normally we would ride bikes but obviously that would be difficult today. We all get out of the van, all but the tantrum-tiger. The students from the private school walk by looking polished and proper and look at us. The faculty also look at us. I am always aware of the public eye watching carefully. I feel judged as if I am a child abuser. I swear to you that I am not. Although, there are times when we lose our tempers and we yell at her. I feel bad about those times because, if you realize and accept that she does have PDD-NOS and how difficult it is for her to maintain and manage her moods, then yelling at her when she struggles like this is equivalent to screaming at a disabled person in a wheelchair to get up and walk. Fred calmly tries to reason, negotiate, bribe. No can do.

She now has gained her composure but she sits stiffened, chin downward, staring at us with her eyes rolled up so all we can see is the whites of her eyes. A good look for the album cover of a heavy metal band. Wait... they don't make album covers. I am totally dating myself. I mean, a good look for an iTunes thumbnail... I'm telling you, I have to entertain myself during these crisis situations.

Somehow, we manage to all go into the dining hall. However, Sienna remains at the door, as if to make a statement to remind us she didn't want to come to the dining hall. She sits on the floor and then starts to growl and scream. "I WANNA GO HOME. I WANNA GO HOME. I WANNA GO HOME."

A nice lady from our community who volunteers at the private school walks by and says, "Well, sometimes you just have to ignore it." This nice lady also happens to be a Kindergarten teacher from Sienna's school. The same school that claims that nothing is wrong with my daughter. She shows no sign of autism or any other pervasive developmental problems at the school and that, "only the mother must need parenting classes and counseling." This is a phrase that the school's psychologist shared with my husband before our case conference last year. This phrase haunts me daily - and sometimes at night it wakes me up from a deep sleep.

We eat, put our dishes on the rack. Luckily, there were only a total of six of us in the dining hall tonight so we weren't too embarrassed. We are able to bribe Sienna to get in the van with a cookie. She of course was supposed to get in control by the time we got home. But she didn't gain control, so she lost her chance with the cookie. Good thing, because I need all the comfort food I can get right now. Sienna stomps in the house then starts hitting her head saying, "I'm a bad girl. I'm a bad girl..." Over and over again.

Is this typical? People say, "Well, all kids have tantrums right? Your kids are just normal. Maybe they are hungry, or tired or maybe you just expect too much from them or you don't discipline them enough."

Do you really think that the tantrum that I just described in this story is typical? It is for us. It is a typical tantrum. It happens when we don't expect it and then they don't happen when we might expect it. I am living on the edge of the unknown every minute of the day with both my daughters. I could share a typical tantrum that my two year who is also on the spectrum does too. I will save that for another post...

What makes our family dynamics more challenging is that our family and friends don't accept our issues as atypical. We aren't allowed to talk about it, get any sympathy for it, any respite. We are constantly judged by the public when we try to run errands. We don't do anything for fun anymore because something might go wrong. So, we stay home. We don't even go to church any more. Talk about the worst place to feel judged as a parent! Then we are judged because we are told that we don't expose the girls to enough that we don't go out enough. It is a never ending problem that every person we know is trying to suggest or give advice. Until you walk in my shoes, don't judge a mom with children on the spectrum. If you know someone who has a child on the spectrum, don't try to fix it. Don't try to minimize it.

And, a public message brought to you by a mom on the verge to losing her mind:

If a child has been diagnosed with an autism spectrum disorder, they cannot out grow it. It is not something that the parents did to them to cause it, and it is not contagious. Remember this.

Fred and My Homestead of Bitterness

Just when I thought the fog was lifting and I was feeling more organized and in control of my life, I hit a funk.

I am not sure where it came from but all of the sudden, I was so angry. My anger, deep within, outwardly was pointed towards Fred. It all started yesterday afternoon when he decided to work late - AGAIN.

You see, Fred is a wonderful man. I believe he is my soul mate and that we have a special, true love that God has blessed before we even met one another. We adore one another and are completely honest with each other. We have walked hand in hand through all of the challenges during our 15 years together. We "saved" ourselves for our wedding night, we endured a major Roller Blade injury where Fred almost lost his leg in college. We kept strong through my mother's tumultuous visits, my new business start ups, his inner city school teaching and three houses needing new roofs AND new water heaters, a flood, several snow storms, the typical in-law stresses, two pregnancies followed by two births followed by two daughters on the spectrum. And through it all, we prayed with one another. We loved one another. We accepted one another.

Now, today. I struggle with bitterness. I remember hearing a Christian speaker once in college saying that men will struggle the temptations with sexual immorality just as women will struggle with bitterness. It is one of those flaws from the fall that we were just 'programmed' with.

So, they say the first step is admitting it. Here is my confession. Brutal honesty. I am bitter today because, for the first time in a year and a half, I realize that I gave up my career and my dreams. I gave up my chance at being someone important as the world sees it. I gave up my business lunches and the freedom to meet interesting professionals. My power to influence and my Coach bags are in storage now.

I guess I wouldn't mind it so much if I saw others in our family like my husband and his parents who live only 15 minutes away also giving some things up. But no one else has sacrificed anything, only me. More about my feelings and disappointments about my in-laws in later posts... I feel like I have sacrificed it all for my daughters' special needs. Those special needs that apparently I am the only one who recognizes and is forced to deal with them day in and day out. The school professionals all think I am a gook. They don't respect me or recognize my daughter's diagnoses. Even the other mom's remain an arm's distance from me as not to catch my white trash mothering techniques. (Again, I use that phrase "WT" but I don't like to because I don't think God makes trash. I just use it because it is a term that describes judgement and misunderstanding in social classes.)

So, although I try to be the homemaker diva goddess and manager, I am oppressed to be the garbage collector and the punching bag. I am the one who gets the brunt of my first grader's verbal abuse. I know, I am the parent and I shouldn't allow her to scream at me when she comes home from a stressful day at school, but I really don't know how else to handle her moods and behavior other than leaving her alone. The more I try to discipline her as an exchange, the more it turns into a fighting match and her mood excels and spirals really out of control.

Then there is my two year old who gets special services from the state due to her sensory needs. Two days a week an occupation therapist comes to our home to visit. This OT's voice is so high pitched that is sends chills down my spine like nails to a chalk board. Every time she visits Sarah, Sarah screams and throws tantrums. For a two year old with auditory sensitivities, the OT's every word is a train wreck. I see it as clearly as the nose on my face. But then, the OT writes in her report that all of my daughter's outbursts are from behavior alone. And, I have to endure these visits two days a week. These outbursts, I am told by the 'professional', stems from my parenting.

I just take it all in. These thoughts consume me while I try falling asleep at night and while I try to do housework. Housework that my brilliant mind was not created to do! There has got to be something more interesting than trying to create neat lines in the carpet while I vaccum. And, by the way, I hate carpet. It is so country and suburb like! I am a freakin' hardwood floor city girl. I am supposed to have a cleaning lady that I complain about during my lunch dates in Greektown! Boo hoo. Those were the days. I miss them!

I continue to grieve my life of broken dreams, all while my husband works. Did you know that he leaves the house before we all wake up? He gets a fresh day on his work load. He is climbing his career bent ladder to the top being recognized for his achievements as he works 60 hour work weeks and gets paid peanuts as a private school teacher. He claims that he is working to earn more of a salary. I claim he is working to keep from being part of our circus acts in the home. He has to work dorm duty tonight, Friday night. Another evening that I stay home, alone, with the girls. I used to be social. I thrive when I am networking and making things happen. But, in the home I sit. Waiting. No improvement. Little to no action other than outbursts and anger.

And bitterness.

Feel free to comment how you want - just don't nag at me. Don't tell me there are worst situations out there. I know that I should count my f'ing blessings but right now, I am bitter. Your 'encouragement' won't help. I will come out of my funk in a few minutes. Planning to take my youngest apple picking. If we can do it without a tantrum - PTL. If there is a tantrum however, oh well it will give me something interesting to blog about!

Toodles Blawgers.

Thursday, September 18, 2008

A Do Run Run Run and Do Run Run

I went for a run yesterday. The first run in about one month. I was feeling extra motivated for a solid workout after watching the premier night of Biggest Loser the night before.

Here were some of the thoughts that I had during my run:

- Five minutes after my walking warm up, I knew it was time to start running I felt scared and afraid I wouldn't be able to actually run. I told myself, right at this corner, I will run. And I did.

- Two minutes into my run, I thought, "This isn't so bad. I actually like this!"

- Five minutes into my run, I thought, "Wow, I have been running for five minutes, I didn't think I would last this long without having to slow my pace down to to a walk!"

- Six minutes into my run, I thought, "Where in the heck did this play list on my Shuffle come from? I don't recall downloading so many naughty, booty smacking songs! And, is Snoop Dogg the Anti Christ?"

- Eight minutes into my run I started to lengthen my stride and hold my head higher. I also enjoyed Gwen Steffani, "B-A-N-A-N-A-S!"

- Twelve minutes into my run, I thought, "Bummer, I haven't seen any cars or people out to see my run. Why am I so motivated by what others think of me?"

- Fourteen minutes into my run, "If I could just keep this pace up until we pass Bonnie's house, maybe she will see me run and think I am disciplined and fit."

- Sixteen minutes into my run, "Wow, that sunset is gorgeous. The lake looks so peaceful. I can't wait to stretch and breathe in some peace like that into my body."

- Eighteen minutes into my work out, "My run will be done soon, but I want to keep running. I am loving this!"

- Nineteen minutes into my work out, "I hope some people in these store fronts and restaurants see me run and envy me. I hope my bust and belly look flattering and not fattening!"

- Twenty two minutes into my run, "Cool, there is a town meeting at the fire station and the garage door is open. I must really lengthen my stride and look like this is a piece of cake. Ahhh. Why did I eat those two candy bars today?"

- Twenty four minutes into my run, "At the next street corner, I slow down to a walk. I can make it..."

- Twenty five minutes, I ran, feeling re-energized, strong, healthy and re-vitalized. I walked home, stretched, showered, drank 3 large ice waters and laid on top of my bed while Fred and I watched our Netflix, "Mad Men, Season 1." Every once in a while, Fred would rub the arches of my feet or my back. He is so wonderful!

Life is good!

Wednesday, September 17, 2008

Chicken Soup for a Mom's Soul (Autism Spectrum Style!)

Today was a Chicken Soup for a Mother's Soul moment that I must share!

You may recall from earlier posts that my daughter is somewhat klutzy. She is so aware with every bug crawling on every leaf around her that she doesn't look right in front of her as she walks, or in the case from this morning rides her bike. She had just snapped on her helmet and wrapped a scarf around the bike seat since it was cold to the touch to her and started on her way to school. As lil sis, Sarah and I stood at the door way, we blew kisses and said our bye byes. During one of my blinks, the bike went horizontal and Sienna let our her whale cry. I ran towards her, barefoot and bra-less for all the parents dropping their kids off at school across the street to see. From the panic of Sienna's cry, I was looking for a head that might have been decapitated. At the very least, I expected some bone to be poking out or blood guzzling into the lawn. Luckily, the cry had just been totally exaggerated a little "over the top."

Sienna sat there on the driveway, tears gushing. I helped her stand then she gimped towards our front door. I could hear a little girl's voice shout from across the street, "Sienna, are you ok?" as I closed the door and helped her sit on the chair right inside our foyer. Grabbing three Band-aids, I hoped I could "fix" the situation and get her to school without another tardy this year.

She insisted on putting all three of the Band-aids on herself. There were no scrapes or scratches or dents. She placed them carefully one on each knee and one on her shin. I told her that she still had plenty of time to walk to school. She told me that she was seriously injured and couldn't even walk. GEEZ MOM, DUH!

I responded, well, you have plenty of time to hobble and limp down the street to the cross guard. "Take your time sweetheart," I replied, ushering her to the door. I gently helped her down the porch. reminded her how brave I thought she was and said my second farewell. As she grabbed every thing she could hold onto, she slowly made it down the drive way, then, on the sidewalk, then, hop hop down the sidewalk very very slowly. As I chuckled inside at her thespian performance, I noticed two young girls across the street shouting at Sienna. They started walking away from the school, parallel with Sienna, cheering her on. I then watched Sienna cross the street and meet up with the girls. They both helped her carry her back pack and hold her hands as she waddled along.

Little tears blurred the heavenly vision for just a moment. This was something I had never seen with my own eyes before. Sienna had friends!!! Real, breathing, walking, talking and supportive friends - not just "nap buddies" (stuffed animals) or our pug, Clio to keep her company and hunt for bugs.

How sweet this morning was to me! Any of you other moms out there with children on the spectrum know how special this moment is I am sure! Thank you God for putting friends like that to help Sienna carry her load today.

Tuesday, September 16, 2008

The Legacy of a Step Child: Part III

That evening, after our frail attempts to look at my mother's drawer of jewelry, I was realized how ready I was to move forward in the grieving process. I wanted the time alone with my mom's memories. I did not want my grouchy step father hovering me like a security guard hounding a shop lifter. Wasn't it my right as her only child to take my time and reminisce while I ran my fingers through her night stand drawer? It wasn't like I just wanted to take her valuables and run. I wanted to relish the flashbacks to the days when she wore the red garnet charm just above her cleavage during the days of her youth and single-hood. I needed this time, alone and private, innocent and intimate. Not only was it important to my grieving but, my mother's will stated that she wanted me to have all of her jewelry.

I decided that this was not the scene I wanted to take my next steps on my mother mourning journey. Taking a deep breath, I distracted Sienna with her bed time routine. As she hopped in the bath, I pulled out the bed from the couch in Tom's living room and turned on Mary Poppins in hopes that would entertain her to sleep. Tom didn't come out of his bedroom for the rest of the evening. Through the darkened hallway, I noticed the light on Mom's bed side had been turned on and I could see that Tom was still frozen in time, still hovering over my mother's jewelry. It was a difficult moment for him. I understand that. But he had been living in their home for ten months since her passing and now tonight, at that night stand, it was my turn to weep. He actually stole it from me during this particular night hour.

Sienna fell sound asleep with Just a Spoonful of Sugar, as did Fred. Fred handles stress with sound sleep. I usually follow suit but tonight, my heart was torn. I missed my mom and wanted to share some time alone with her and our memories so I frolicked and fumbled through the darkened condo onto the garage. Mom and Tom had moved into this condo a few years earlier. They were downsizing from a large home with several gorgeous victorian-styled guest rooms. They had originally lived in a house in the woods that Tom had designed in his young chap days. They had once discussed opening their house into a bed and breakfast. But, as my mom's health started to deteriorate several years ago, they made the decision to downsize. And, although they did downsize in living space, my mom had refused to get rid of anything. So, the new condo's 2-car garage had become storage for a messy mass of boxes and dollar store sacks. Most of it was junk of old and new. New junk from clearance sales that my mother compulsively attended. And the old junk was from her past, resembling piles and piles of pains from her divorces, her childhood and her self-acclaimed grief of motherhood. (I can remember calling my mother to wish her Happy Mother's Day on the telephone. When I asked her what she was planning to do that day she replied, 'I never leave the house on Mother's Day. It is the worst day of the year for me." I was her daughter. I also was a new mom at that time. I hope I never feel so much resentment towards my daughters that I actually say those words to them. But, that junk is for a different post, let's get back to the part about her junk in her garage.)

As I scavenged through the old Christmas decorations, I recalled making candy and fudge with Mom when I was Sienna's age. We had made hard candy and flavored some with green peppermint and some with red cinnamon. I actually had a drip of hot candy drip on my finger. I still have the scar today. It is in the shape of America, on my index finger. Ahhh, getting lost on memory lane. I wanted those decorations but I was feeling like taking them would be wrong. I then realized that they were in a box marked to sell at a garage sale. Tormented, I walked to the other side of the garage. My feet were numb from the cold cement floor. I should have stopped to go in and get slippers but I was stuck in time. Breathing in through my mouth, I could smell the moldy, musty odor that fumigated their storage area. So much stuff sitting there for so long. So many pretty vintage pieces that I don't remember in my childhood but I thought looked beautiful. No wonder she had a difficult time departing with some of the trinkets.

I started to wonder where the crazy jugs were stored. At that instant, something drew my eyes upward. I am not sure why though because there were at least one million of knick knacks to look at easily on eye level alone. Perhaps it was my mom's spirit that lifted my line of attention towards the top of the top of the top of a stack of boxes stacked on more boxes on a shelf. There I found a note book. One of her journals. Then, about five feet to the right, I saw a shiny green cardboard box. For some reason, I stretched to the tip of my toes to pull that box down. In it, I found my mom's nice jewelry. Her diamond and gold and other gem jewels. How did they get in here? Why were they here? What would I learn from reading her notes in her journal?

Read more in future posts...

Monday, September 15, 2008

The Legacy of a Step Child: Part II

As we opened my mother's night stand drawer, there was a group of sparkly playful rings with the KOHL's clearance stickers still attached. No doubt that my mother probably found them on clearance and bought them for little gifts to give her little grandchildren on our next visit. Sienna was drawn to them and as she cooed she lifted it up. The room filled with light,
from the light on the night stand, the joy of her eyes and the sparkle of the ninety-nine cent treasure in her small hand.

My step father was hovering over us propped on the bed. He snatched the ring from her hand like a vulture grubbing a baby from a pick up truck. He examined it closely, looking for what I don't know. But it made both my six year old daughter and I feel like it wasn't our place to be looking through my mother's things. I examined the setting with an out of body stare, how pathetic my daughter and I looked on the floor, on our knees looking up towards the opened drawer with my 80-something step father perched above us as if to say, "You deserve nothing. Beg all you will, but you are nothing but a thief to me."

I was reminded of the first night when I visited my mother in the hospital before she died. I had gotten the phone call from her nurse while at church on Sunday morning. She told me that my mother has been trying to fight an infection but with her diabetes and COPD condition, she may need additional medical assistance if she does not improve. In other words, she would be put on a ventilator. As with the previous numerous hospital visits did not know how the reality really was. My mother had a history of painting a grim picture for me as to get my sympathy, my attention. I think in her dreams, she really wanted me to leave my husband and children and move in with her and Tom so that I could take care of her every need. She wanted me to cook, clean and bathe her. Little did she know that she was supposed to do these things for me as a child. She skipped that phase of motherhood all together, and along with random baby sitters, I essentially raised myself. I can remember moving a stool over to the oven to cook myself eggs for breakfast one morning.

As I tried to talk with the nurse and reason out my doubts, my husband and I decided that once and for all I would go down to Cincinnati to see how bad this hospital visit really was. So, I packed a few things, kissed the kids good bye and got in the van. I cried a lot that drive. Under normal conditions, the drive from Chicago to Cincinnati should have taken me four or so hours. But, this time I was clearly in God's hands. There were issues I needed to sort out in my mind and heart and the ice storm allowed me an additional three hours to sob, to moan and cry out for God.

It was 8 p.m. when I finally pulled up to the hospital. The florescent lights in the entry way to the hospital made everyone look like zombies. My eyes puffed from the crying hard searched for ICU. I took the dingy elevator up to the fourth floor and Tom was waiting, somberly in the waiting room. I thought we would just walk in to her room right away but he sat me down to tell me, "About 30 minutes ago, Mother was in a lot of pain and so the doctors put her on a ventilator." At that time, I thought he just meant an oxygen mask. He then continued to tell me, with a lot of extra words that I had to decipher, "They had to put her in a coma for the procedure so she will be sleeping when you see her."

Shucks I thought. I rushed through an ice storm and now she will just be sleeping. He picked up the phone on the wall to call for a nurse to open the ICU doors. He was in his blue scrubs, color coordinated with every single thing in that ICU. The floors, the walls, the equipment, the mood - all blue like the ice storm I just had traveled through.

A young nurse, an Indian lady approached me. She had a clip board in one hand and a pen in the other. She handed me them both as she asked my permission to remove my mother's rings. "We would like to remove them now in case there is any swelling in the fingers. This way we won't have to cut her fingers off." I couldn't catch my breath. In the back ground, I could hear a lot of beeps from life preserving machines from other patients. We finally walked into my mother's room. There she was. Unrecognizable. Her body, large and strong yet limp, jumped with every thrust of air the ventilator pumped into her. Her eyes closed, from the coma. Up and down, her body went. The teenaged-looking doctor was telling my step father that it didn't look good. From the X-Rays of her lungs, there should be some transparency but on her X-Ray, her lungs were solid black. The nurse was giving me a sterile plastic bag, like a Ziploc bag but it had a hazardous icon on it. My mom's rings were in it. I must have signed the papers although, I don't recall. I noticed my step dad signing papers, I think it was giving permission for a feeding tube.

The night turned into morning. Then, the morning turned into night. My body and its thoughts were all numb and limp. We spent the next couple of days at the hospital. I put my Blackberry on mute. I kept carrying my laptop around because I knew I had some drop dead deadlines that I needed to tend to but that seemed like a world away at the moment. I started thinking that we needed to find my mom's living will. I knew full heartedly that she did not want to be kept alive with artificial machinery. I tried talking to Tom about this one night. I asked him if he knew where her living will was. He snapped at me. I explained that the living will was not about her assets, it was about how she would chose to live if she was not able to make decisions on her own. "Like right now, I do not think she would want to be laying in that hospital bed and she certainly won't want to come home, brain dead with a feeding tube." I actually didn't say that exactly, I tried to be as diplomatic and sensitive as possible. It was a long, drawn out discussion that included the church's visiting pastor, the nurses, doctors and social workers. My step dad didn't care as long as he could bring her home and they could sit and watch TV together.

"Tom, who will take care of you both? Even before Mom got sick, you weren't able to care for her needs. What makes you think you can care for her when she comes home with a dialysis and feeding tube?" I started to get more poignant.

His sad, feeble gentleness turned demonic as he asked me about Mom's rings. I wanted him to trust me so I said I would get them for him. But, I also knew he was not in any position to trust and care for such valuables. I couldn't trust him to make the right decision about my mom's life, and I couldn't trust him to hide and care for my mom's diamond rings at such a time like this either. Still, I opened my laptop bag, still sitting by my feet like a loyal dog and handed the hazardous waste Ziploc bag to him. He opened it up to count the rings to make sure they were all there. He then told me that these would go into a lock box. I agreed that would be a good place for them. I told him that in the morning, we should go to the bank, put the rings in the lock box and look for the living will.

More on the story of the Legacy of the Step Child, my mother's living - and dying will and how it impacts me today in future posts

Sunday, September 14, 2008


The past year and a half have been filled will a lot of changes in my life. There have been some highlights but we as a family have weathered a lot of stormy weather. One thing that has helped me endure the struggles is my husband's grand sense of humor. He makes me giggle and chuckle with a variety of special accents that he acts out. One of my favorite characters he greets me with every morning is his high pitched, "Coffee Delivery Service!" Its charms me every time as he brings me a hot cup of coffee, dark creamy and delicious. He sets it on my night stand and kisses me on the cheek.

I love my husband even more than coffee!

Saturday, September 13, 2008

The Legacy of a Step Child

As a follow up to my earlier post titled, Feeling Like Dirt on a Piece of $@#*, I shared about my experience from last weekend. We were visiting my dad, recently burdened with a severe disability that has put him in a wheelchair, taken his speech and is slowly taking his ability to swallow food. We joined him as he was awarded into the town's Hall of Fame for his years of service to the community. It was to be a proud moment for him and for our family however, it also marked a memorable moment in our family history when we were all gathered to notice how significant my dad's disability had become.

The discussions around the breakfast table the morning after the award ceremony were all positive and you would have thought they were all optimists however, from my perspective they were just in denial. Afraid to face the realities of what is to become. Afraid to not know or control the outcome of my father's health.

And, although I also fear those things, the most painful points I shudder from is the loss of my father, the only blood relative I have left will soon be leaving me. All I will have left are step families and in-laws.

At face value I have always gotten along with my step parents. I have considered them a blessing to my life. Both my step mom and step dad have added strength and stability to my life that I would have never had with either of my parents alone. But, as my father becomes frailer by the day, I am reminded that I am only a step child with no rights to a proper legacy.

It was just one year and a half that my mother passed away. My step father was the executor of my mother's will and although my mother and I had a tumultuous history throughout the years, it was the two years before her passing that we had become closer and more forgiving towards one another. Prior to that time however, she had done some demeaning and deranged things to her will and her assets leaving little to nothing to my girls or to me. She had left much of her assets to distant nieces and nephews to my step father's relatives. To write about this today, hurts my soul, but it is what it is and I have to learn how to not let it get the best of me and my memory of my mother.

The one item that my mother willed to me was her jewelry. However, the mourning turns even darker during a visit to, now my step father's home (I was so used to calling that place, "Mom and Tom's" to hear it just called "Tom's" place was awkward for me.) We were visiting my step dad around Christmas time. I knew this time would be especially difficult for him and since he had no family of his own, I felt it was my duty to spend some quality time with him near the holidays. I had also called him daily after my mother's passing until I knew he was stronger and had friends near by to help him. I even considered having him move closer to us so that we could look after him. He had been my step father for 13 years and I felt the God-given responsibility to look after him.

It was during this Christmas visit, ten months after my mother had passed that I first received a copy of the will. I had not gone through my mom's things because it was too painful for me yet. In addition to losing my mother, we had been told that Sienna had ADHD and Sensory Integration and I had Sarah as a permanent hip ornament, only one year of age. I also had to let my company of 10 years dissolve since I was unable to keep so many clients' demands abreast while caring for my step father while at my coma-induced mother's bed side. So, after we prepared a holiday dinner, I asked Tom if it would be OK if I looked at my mom's jewelry. Sienna and I opened the night stand drawer and saw the jewelry like a glimpse of my mom's joy sparkling a bubbly smile at us. Queen Bubbly was my mother's Red Hat Society name and it fit her to perfection. Although, the bubbly side of her was only half of her. The other side was burdened with depression and a heavy grip to the past.

More on the story of the passing of my mother, how my step father treated her will and the reality of my legacy in future posts.

Friday, September 12, 2008

Dress Up for Mommies Too?

There was a spring dance last year at Sienna's school. Being only in Kindergarten, of course, I planned on going with her. It was an 80s theme and if you dressed in an 80s costume, you got in for free.

So, after dinner one night, Sienna and I got out my old plastic Kadoodle box that was covered with my old Woodstock stickers. This is where I have kept all of my funky, club going, high school prom bling-buttah-bling. Since the 80s was my decade and Madonna was my idol back then, I naturally Dressed Us Up in My Love...

Big hair, bangles and lacy gloves, yes, I still had the goods. In fact, I was saving all of it for such a day like this. We had so much fun looking through my old junkie jewelry we laughed and laughed. And, after putting on the final lipstick, I sported a pair of heals, we treaded onward to the dance. Since the school was only a block away, we walked, hand in hand. I was in heaven.

The doors opened, we were able to nod in our Madonna gear and not pay the $1 admission. There was a band and the school gym was rockin! Suddenly, the good times turned upside down though. I scoped out the crowd and quickly realized all the parents do not dress up in this town. They do come to the dances and fill the stadium like seats surrounding the gym so they can catch glimpses of the new mom in town who didn't get the memo. I looked like a hooker!!! I took it in stride though because there were bigger problems to deal with like my little girl's stage fright.

The disco lights and music and crowds made my daughter cleave to her hooker-looking mamma. I tried to comfort her with some soda pop or a snack. That worked for a little bit. Then, she saw her classmates from afar. I pointed them out to her and said, "Look Sienna, there is Chrissy and Jenny!" She recoiled more and panicky proclaimed she needed to go home.

So, off we went. Like a Virgin and a Lucky Star, daughter and mother walked home, hand in hand.

Wednesday, September 10, 2008

Letting Go of the IEP

The case conference for Sienna is in five days.

I keep going back and forth on what my position will be during this conference. It was a year ago when we had our first case conference at Laketown Elementary. It was then that they had told me that the school's psychologist did not see anything in my daughter that would support our independent diagnoses and the previous school's IEP that we had brought along from Chicago. The IEP process in Chicago was so different than Laketown. In Chicago, the school system held my hand and partnered with our family. I safely trusted their opinions. Now, I am in a rural town. They are clueless about autism spectrum disorders. After digesting book after book and Googling the hell out of Autism, Asperger's, PDD-NOS, ADHD, Mood Disorders, Sensory Integration, Sensory Overload, Hyperlexia, Co-Morbidity, and the like, I am still a clueless parent when it comes to my own kids. I try to understand my rights as a parent, I try to remember conflict resolution, I try to realize my daughter's needs in the classroom. I am flying by the seat of my pants trying to parent my own children in the home, failing most of the time. It is impossible for me to educate and lead the school to help my daughter in the classroom, especially when they claim they don't see anything out of the ordinary.

The school's diagnosis stated that they didn't see anything that resembled autism. The psychologist suggested that I find counseling and parenting classes to help our conflict in the home. Sienna's Kindergarten teacher mentioned to me by email that she was so sad for Sienna. She suggested that Sienna was typical and the only thing wrong with her was that I had taken her to too many doctors for too many tests and that would result in a couple of sad days for her. She was referring the the week we had last spring when I couldn't get my five year old out of bed. She had no fever and no other illness that I could detect other than, dare I say it, depression. That saddens my heart to see my own daughter so limp that she isn't able to sit up to eat.

At our first case conference last fall, when they told me that nothing was wrong with my daughter, I was excited and more than ready to sign on the dotted line! "What? Nothing is wrong with Sienna?! Great!!! Coom-by-ya!" With pen in hand, I recalled a tip that I read on line about never agreeing or signing anything during an IEP meeting. Always take it home and sleep on it. That I did. And, but that night I had trouble sleeping. My youngest daughter was having a difficult night sleeping and whenever I would try to console her, I remembered what that counselor said about my parenting. I felt broken and nothing I did or didn't do could console my youngest. In fact, nothing I did or didn't do seemed right when I was trying to comfort Sienna all those sleepless nights during her infancy and toddler-hood.

The school seems to handle Sienna well. Sienna has been thriving since we have moved here. She gets in a high abilities program because she tested at the 99th percentile in reading and math. She has gotten 100s on her spelling tests. And, when asked, none of the recess aides or special ed or classroom teachers see anything out of the ordinary. They see a spunky, creative quirky styled little girl. And, isn't that what I want them to see?

Last year I spent so much energy fighting the case conference team. I turned my wheels in trying to convince them that something was wrong with her. I have decided that I don't want to do that any more. And, my therapist agrees so does my husband. On Monday, when we go in for our next case conference, they will most likely tell me again that Sienna doesn't need any services. That she is 'not eligible' for services. I think I will smile and simply say, "Her professional medical diagnoses, both privately submitted and the assessment acquired through the independent evaluation state that she has diagnoses that would allow services based on the IDEA. However, I agree that with all the intervention that we have been working on in the home in the past four years, Sienna is now thriving. We do have some goals for her that we would like your help with in the social arena for her and if I may consult with the teacher and counselor from time to time, I would appreciate that." And let it go. Let the school do what they need to.

Afterall, I have a two year old who stays home with me who is on the autism spectrum. I need to reserve my energy for her. I can't lead the school in helping them recognize the early signs of Asperger's. I used to tell myself that God called me to this town to help the other parents who couldn't help themselves win the fight with the school system in helping their children on the spectrum. But I can now hardly manage my own family let alone advocate for the entire town. In God I trust.

Tuesday, September 9, 2008

Help Find the Mitt

The current school system that we are in does not recognize my daughter's ASD, Mood Disorder or ADHD. In fact, despite the three professional medical diagnoses that we have submitted to them from Chicago, Indianapolis and locally, the schools psychologist suggests that I the parent get some parenting classes or counseling.

This was the schools suggestion from last fall when my daughter started Kindergarten here. Although we brought a solid IEP from Chicago, they still look the other way and I feel like an over neurotic mother who, as I have been told via an email from my daughter's Kindergarten teacher, "troubled my daughter into having so much stress from taking her to doctor after doctor for unnecessary testing."

Now, the first grade teacher sent a Build-a-bear home with my daughter on Friday. It was dressed in a baseball outfit. Cute. We were supposed to take the bear with us all weekend, take a photo of the bear doing stuff with us and my daughter was to journal the activities. All of that in one weekend. Monday morning, I get a call from the teacher saying that the bear was missing the ball and little mitt. I search the house high and low. Luckily, I did find the ball. The mitt however is missing. I ask my daughter about it and it is like she is deaf. I asked her about it several times and each time she looks just as confused. The mitt is no where in our house. I don't recall even seeing the mitt and neither does my daughter. But, the teacher insists on the mitt being returned.

So, Supermom says, "I will order a new one." The teacher responds as if to tell me, "Of course you will..."

I can't figure out if I am angrier at my daughter for losing the stupid mitt, the teacher for not having enough grace to let the issue rest or my financial circumstances being so tight that a mitt will mean that I don't buy cereal for the week. Then, I visit the Build-a-bear website and find that the mitt is OUT OF STOCK.

What do I do now?

Meanwhile, I have samples of Lexapro in my purse that my doctor gave me this morning. I can't decide if I should start on medication again. I don't think that my depression is that bad. Although I am blogging about a stupid mitt. I can't solve my own problems right now. I can't even get myself organized enough to make myself lunch. Guess perhaps I do need the Rx after all. But what can I do about the STUPID STUPID MITT???

Monday, September 8, 2008

Feeling like Dirt on a piece of ^%@%!

So, last week at my therapist's I told him that I was thinking of ending my therapy sessions for the time being. There are times when you need therapy - REALLY NEED therapy and then there are other times that I consider therapy a mere luxury. And, frankly, I'd rather get a pedicure.

But my therapist suggested that I pencil something in and see how my month goes. My husband who is naturally tight with money also agreed that I continue to go. Good suggestion! How did I know that I would have caught a pretty bad case of the blues over the weekend?

We took an overnight trip to visit my family. And, on the way home, like almost every trip before, I left with an extra huge suitcase filled with disappointment.

Usually on the drive home, I can cry it off or sleep it off or eat junk food to purge the pain but this visit was different. I'm still swimming in the muck today.

It was all too much for me to bear. One thing I have realized raising two daughters on the spectrum is that I need to surround myself only around supportive people. I do not feel very supportive or accepted by my family. I am not even sure I should be calling them family right now. I am just a step-child really and all that they have given me in my life has been part of a consolation offering. Since my folks divorced when I was two, I have really not been worthy for anything more from a real family.

I actually have matured and forgiven a lot throughout the years. In fact, I believe I have always tried to take the high road. Despite my struggles as a teen and my flirtations with the party scene, I have always tried to gain the attention and approval of my family members. I can remember telling my dad how grateful I was that he was my day and what a good man I thought he was for staying in touch with me after he left my mother.

Um... HELLO? What a low self image of myself that I didn't have the innate knowledge that as my father, he is supposed to not only 'stay in touch with me' in fact, he should have stayed with my mom and dealt with her mental health issues. At age two, I should have not been left alone with her to take care of her for the next 30 years or so while he went along to get himself a new wife and home and family and live happily ever after. (More on this in later posts. I actually love my step-mom and consider her a blessing to my life. I am just sorting out some junk right now so things have to get messy until I get reorganized!)

As we get the van loaded and I try to round up my two free spirited too wound-up daughters whose issues still aren't completely understood by the extended family yet, I notice my dad putting oil in his car, my step mom cleaning the inside of the windows of his car and her father or, "Pappaw" as everyone calls him put white touchup paint on the exterior. I thought what strange timing to be cleaning Dad's car. I wish I had time to do that to our car. Better yet, wish they could move their assembly line over to our van! We have Cheerios and hand prints on the windows that have been there for years!

Then, I realized, they are GIVING my 30 year old brother their car. I also caught a glimpse of them giving my brother $100 for gas money while he picked through all of my dad's watches and neckties. My dad asked him, "When do you get paid next?" He is a corporate attorney in Chicago... HELLO? Does anyone realize how charmed a life he has? Does anyone realize that I, my family really are the ones in NEED gas money? Oh. How I am not feeling the love!

Now that my dad is handicapped, he can't drive and he won't be needing all his fancy clothes and jewelry. I wonder if he throws in his Rolex, I mean, why not? My brother could use it! He definitely needs a Rolex in fact. Why not? He's earned it. He's worked his way up the easy trail of Moochville and is entitled to the Rolex by now. They already have helped him through college, then straight into business school for his MBA and then immediately into law school. He hasn't had to work a day in his life. He has worked, but he really hasn't HAD to work because my parents, or I guess, HIS parents pay for his everything. And, he hasn't gone without much. He frequents the White Sox ballgames at about $80 a ticket, he wears Versace shades and suits, North Face jackets and drives a Maxima and he has always lived in the chic parts of Chicago. He lives a lifestyle like he is a day trader or a drug dealer. And, I think about how he treats my parents - I mean HIS parents. I can't even type it in now because I am so emotional about it. It isn't like he is cruel or abusive towards them, it just seems that he takes and takes and never seems appreciative or willing to give back. He doesn't even buy anyone gifts. Oh, well, he did give my daughters some stuffed animals for Christmas last year. My step mom DROVE him to the mall, helped pick out the gifts, paid for them and then wrapped them for him. Then, she bragged about how he is such a great uncle getting the girls such cute gifts. BARF. He gives birthday cards, sometimes six weeks late. And, when he does give one of his stupid not-very-funny cards, my parents, I mean HIS parents always laugh their heads off and say, "Isn't that so thoughtful?" Double BARF BARF.

I was an A or B student throughout high school. I wanted to go to college but they said I needed to figure out what I wanted to be. Even though Pappaw was the school's guidance counselor, didn't they know that most kids who go to college figure all the out later? The real reason they didn't want me to go to college was because when I was two, the divorce attorney told my dad he had to pay for college for me. My mom told him that she'd hope I'd want to go to Harvard. So, well if they don't encourage me to go to college, they win. Well, I did end up going to college, four years after high school and they paid for it until I was able to get financial aid and scholarships at age 23. I thought all this resentment was washed away in the 'Bye-Gone" file of my mind. I thought I had forgiven them for this. Why am I wasting my precious energy thinking about it and typing about it? To use my daughter's boo-boo analogy, it is still a wound. I thought it was healed but the bone and marrow is still weak that without the proper care, it can still break.

So, here I sit wounded. And, I am reminded that in my family, I am as important as dirt on a piece of shit. I apologize for the swearing. I really try not to do that but I just know no other analogy to describe how demeaned I feel right now. I don't understand how I could have had such a difficult upbringing and now have children who are so challenging. I don't have the proper skills or support from family to manage all of it! My in-laws who only live 15 minutes away are worse. But, another post for another day.

And no matter how hard I try to 'grin and bear' it, I feel so rejected, so misunderstood, so sad and angry. I don't think it is physically possible for me to take this on. I am going to have to call my doctor and get on medication today. I hate that because it is just more money to spend and I haven't been able to find medication that doesn't make me sweat like a pig. I might try to just hold my head up, put a smile on and go about the day running errands as usual. I am putting this personal conflict on a blog shelf for now...

Why don't they love me just the way I am? I love my girls just the way they are.

Saturday, September 6, 2008

My Dad is in a Wheelchair

Yet, another one of my current life's tribulations is the story of my father. He is the only person in my extended family still alive and I am only 36 years old. Last year, after my mother passed away and my daughter got the diagnosis of PDD-NOS, I can remember awaiting the phone calls from my step mother regarding my dad's test results. They went to numerous specialists and even some non-traditional medical professionals over a nine month stretch. Yet, to this day, we have no accurate diagnosis. All we know is that he started losing his balance. He started losing his muscle tone. And because of that, at the young age of 62, he lost his private medical practice too. He could no longer stand long enough to treat his patients. His legs would quiver so much that he couldn't even take one step forward without having to concentrate and hope not to fall down. And, when he falls, he can't get up. I still can't believe my eyes! And, when I call to talk to him on the phone, he slurs like he is drunk although he is not.

When we traveled to Chicago last weekend to celebrate my brother's 30th birthday and watch him run, ride and swim in a Triathlon, I was startled to see my dad in a wheel chair for the first time. It was balmy and crowded and we were all tired from maneuvering through the masses on the crowded sidewalks. I think I drank like ten bottles of water to keep hydrated that day. I would offer my dad some water, or snack and he would decline because he knew that he wasn't able to wheel himself into the bathroom, I think that is why. Either that or he is depressed.

My heart is so sad for him and for my step mom. Today, the Saltville school system is honoring my father in the Hall of Fame for his years of service to the school corporation. Since he had to sell of his practice last year and slide into an unwelcoming retirement, this is a big celebration for him. We are loading the van right now and preparing for our drive there. I am looking forward to seeing others acknowledge him and his dedication through the many years. Yet, I am scared that I and the rest of my family may be forced to recognize his handicap - how it has snuck up on us, how we don't have a name for it and how we don't know how his future will stand.

More on my father, his condition and our past relationship struggles in future posts...

Thursday, September 4, 2008

The Autism Filter: Part I

When I first heard the "A" word, I didn't quite understand it. I wasn't ready for it. I was still blind. From the time Sienna was a baby, I just thought I was a klutz of a mom. I just didn't have a motherly instinct and felt so much rejection from my first born.
The pictures below capture a typical struggle of me wanting to show affection to my daughter. These photos were taken on mother's day.

The day care teachers and directors first started to suggest to me that I get an assessment from a professional. They said that Sienna, "had trouble with transitions and was a little aggressive with care takers and her peers." She threw tantrums a lot, but I just thought we were still in the "terrible twos." She also didn't speak until the age of three and I blamed this on the two non-English speaking nannies that we had when she was an infant. More about the blame of the nannies for a later post...

So, from ages two until five, I started to focus in on what it meant for a toddler to have difficulties with transitions. I started to become more in tuned to the noises and the bright lights and the crowds that were igniting these tantrums. I found a book on the shelf at a Christian book store, "Out of Sync Child." As I read the jacket cover, tears swelled my eyes. I started reading the book with a highlighter and would read excerpts of how it related to us to my husband daily. We both agreed that Sienna was out of sync. But what now?

The school system at this time was so supportive. They spoon-fed me and held my hand. I will never forget the day I had to sign my first IEP that would give permission to let a bus pick up Sienna from the private preschool and take her to the half day of special services for her. It was a short bus. I used to make jokes about riding in a short bus. Now, the curly blonde little girl, the first child born in this generation on all sides of our family, the one who is so stunningly adorable even strangers stopped us in public to tell us she should be a model was now going to be riding the short bus.

One more year until she starts Kindergarten. She really hasn't started her school career yet I thought. I told myself, "No harm done... if these professionals can help her with her tantrums and transition difficulty, then she will be mainstreamed for Kindergarten when all the other kids in the neighborhood start and we can put all this behind us." Whew. And, that was that. Or was it?

More about how Autism changed our view and blurred our vision for our future in future posts...