Entering a New Chapter of Motherhood

Yesterday, as the school psychologist left my home after reviewing Sarah's assessment with me, I realized that I was entering into a new chapter of motherhood.

My youngest daughter, Sarah will be turning three in March and will be phasing out of the 0 - 3 program that is government funded and has been providing therapy in our home two times a week. When a child turns three, there is a transition process that takes place so that another government funded agency can give proper services and therapy for the child to prepare him or her for school. And, after several hours of testing spread out into several sessions throughout the past couple of weeks, the 'professionals' have reported that my daughter will not be eligible for any services.

With one side of my heart I am relieved! I am thankful to know that we no longer need to have our weekly schedule spent doing therapy. I am also grateful that my daughter tested 'Superior' in language and cognitive skills. I mean, I should be proud, right? However, my concerns are honed in that along with those high results, she tested borderline and very low in social and emotional development. She also struggles with sensory issues as reported by the Occupational Therapist. This report only reiterates my original concerns for my child as I have lived this chapter of parenting several years ago with my oldest daughter, now age seven. My seven year old has Aspergers Syndrome, although, we didn't know that at the time. In fact, we just are learning about it as I key this post in.

Asperger Syndrome is such a tricky disorder that has taxed me as a mother. It has changed my life in ways that I could have never imagined. It has given me a mix of challenges and blessings. And, as I am still learning parent strategies to get through each day and learning to restructure my dreams for my oldest child's future, I now am seeing that both my daughters may be walking in the similar paths.

Life is all about choices. We chose what we will believe, how we will live and who we will be. Although I am tempted to chose to be a victim, befuddled, judged and in daily grief, I chose another window to look out from. I admit that there are days when I do glance from the darkened viewpoint and I am overrun with tears and isolation. I do let myself have healthy pity parties from time to time, I mean after all, it's only fair! I am hoping that the pity parties will occur less and less as I grow into my new role as a mother to children on the autism spectrum.

And, as I watch the psychologist leave my home on a Tuesday morning in February, I am thankful that I am able to process and condense my thoughts long enough to realize what are my challenges. And, I come up with a new mantra as I enter into a new chapter of motherhood:

I will accept the quirks of my children and the ignorance of others and find healthy coping strategies while maintaining an eternal vision.

More about this mantra in future posts...

I support Autism Twitter Day! Will you?

Parenting two children on the spectrum, I have felt like a klutz since my first push during labor! Since spawning my first kiddo over seven years ago, I have been on a journey of motherhood unlike any other.

Although there are no manuals that can teach any mom how to parent their special child, caring for a child with special needs - specifically, a child on the autism spectrum can be especially surreal. Every day, the needs change. From the time my children were babies I have tried to figure it all out.

Now, after endless hours of research covering a variety of syndromes and disorders, I have feared the possibility along with the reality while parsing the relative information from stacks and stacks of professional recommendations and diagnoses covering Parenting, Strong-Willed Children, Autism, Fragile X, Asperger's, PDD-NOS, ADHD, Bi-Polar Spectrum, Gifted, Sensory Integration, Sensory Disorder, etc. My husband and I have had to change our career paths and life styles and have had to learn to budget our time and money so that we won't go into debt and/or divorce over the countless recommended interventions and therapies from brushing, diets, balls, vests, blankets, swings, social games and groups, squeezy thingies, bouncy doo higgies and artsy fartsy fun. Some of these items have applied for our needs at some of the times, but all of this has been overwhelming, border line new-age-voo-doo to us to say the least!

Then, there are the teachers, family and friends and foes who tell us that there is nothing wrong with our children and that we need to just be better parents. At times, I am tricked and confused by their comments. For whatever their personal reasonings, I have had to learn to desperately grip on to that teeny tiny motherly instinct that has not yet faded away and I think I am the only one who truly knows my daughters and their core needs!

I have earned infinite invisible degrees and badges of honor as a mom to a seven- and two year old on the spectrum and God still has much more to teach me. I love my kids. And I want to help them as best as I can by understanding their needs and educating others in our family and community. I look forward to joining in on the discussions that will be shared on the inaugural Autism Twitter Day!

Can you join us?

Autism Twitter Day, Tuesday, December 16, three times throughout the day, 9:00 a.m., noon, and 8:00 p.m. PST. Prizes for young adults with autism or asperger syndrome will be given away during these twitter sessions!

Whether your immediate family has been impacted by autism or if you know someone who has, you are welcome to participate. There is never a day off for the mothers, fathers, siblings and friends who support a person with autism. Here is a chance to gain support, understanding and resources that can help you navigate your life!

Come and join in on the discussions. A variety of topics will be shared on how to best handle those curve balls that the spectrum disorder tosses in to your daily life ranging from:

family dynamics,
from the bus to the classroom,
behavior,
variety of therapies,
special diets,
social skills,
independent living,
self care and hygiene.
bullying,
IEPs,
respite,
books, toys, etc. that have helped your family.

This includes sharing links to your sites and blog posts.

Hope to see your avatar there! Sweet Tweeting! Visit Autism Family Adventures to learn more about the event and to RSVP today!

Autism Family Adventures: RSVP for Autism Twitter Day

Scarlet A for Autism

As I sat at the peditrician's waiting area, I saw a mother enter, her arms overflowing with a large child. She was probably about seven, my own daughter's age. By her posture and gestures you could immediately see she was severely handicapped. In an instant, I felt much remorse for the mother. Then, as she sat in the seat directly across from me, I saw an amazing interaction. With her warm gentle and strong hands, she embraced her daughter's face and they were nose to nose, giggling and playfully whispering to one another. I saw watched the daughter's face light up with pure bliss.

I wanted to stare in amazement at them. For in that moment I realized how immature and selfish I was. My daughter is seven and I am still in the early phases of acceptance. Accepting my daughter for who she is and where she is on the autism spectrum has been one of the most challenging endeavors I have experienced. Judge me all you want, I am just being honest. You see, autism affects her emotions and behaviors in a way that are socially unacceptable. It's like that saying goes, "Love the sinner, hate the sin." I love my daughter! I hate her behaviors. I have to learn to accept some of the behaviors some of the time. But that is always difficult. I haven't figured that part of the puzzle out yet. I think I am doing a pretty good job at it, maintaining my cool and taking it one day at a time. And as I gaze across the waiting room, I see that mother who has a child with so much need. Yet she is accepting and patient and full of grace and love for her child. I on the other hand am helpless and clueless most of the time, such a klutz about motherhood!

My daughter is able to keep it together most of the time. On most days she is a walking talking Hannah Montana. But, there are days and moments when she struggles and - uh oh - what just happened?

It is on days like today when my husband and I see the clear deficits in her. With her penguin-like waddle, hands and fingers flexed tightly, her eyes squinting, baby talking or talking like an otter or dinosaur, she tries so hard to "fit in" to her surroundings. I am not sure why today she was acting like this. Did something happen at school? I wonder, never knowing. And when she behaves like this, it is so opposite to her typical posture and behavior that sometimes I think she does this for attention. Then, this evening at 6:00 p.m., she had a hair appointment. Here is how that event happened:

5:50 Time to get shoes on and get in van to go to hair salon. Instead, Sienna gets in van barefoot, shoes in arm.
5:58 1-2-3 Magic WORKS miraculously and she puts shoes on and whines and fusses as we walk into the salon.
6:00 Sienna crawls under seats in waiting area. I hang coat up and try to over compensate for my daughter's behavior by smiling until my face hurt.
6:05 Hair dresser is looking and waiting. I write a note that reads: Daughter on autism spectrum. needs a few minutes to adjust. thanks.
6:10 Realizing that hair dresser will be needing to go home after this appointment, I firmly tell Sienna to stand up. I lift her up to her feet and push her feet forward, one foot at a time like they did on Weekend at Bernie's.
6:15 Lift Sienna onto salon chair and she screeches in terror when she sees that there is a booster seat. She refuses to sit in and tries to climb over the back of the salon chair. I quickly remove the booster seat and firmly place her down onto the salon seat.
6:20 Stylist offers her to choose which cape she wanted, Zebra or Purple Silk? Daughter, with chin forced downward, eyes rolled to her eyelids grunts at her. I am appalled. I want to apologize, pick her up like a baby and leave. But, we needed her to have her hair cut and we have made this appointment weeks ago. She pulls the cape from her neck, shakes it out and wraps it around her body tightly.
By 6:40 we were done. WHEW!!! I paid the hair dresser $12 for the haircut and added a $5 tip, although I felt like she earned more like a $50 tip!

After my daughter got home and went to bed, I was telling my husband all about the experience at the hair dressers along with what I witnessed from the pediatrician's office.

Why is it so hard being a mom to a high functioning daughter on the spectrum? I should be so thankful that she does so well most of the time. Why am I still struggling to accept my daughter's behavior?

I feel like I wear the Scarlet A on my chest. A for autism. I am so judged by others in this small town we just moved to. Other mothers don't want to be friends with me let alone have their children be friends with my daughter. The schools don't want to accept my daughter's deficits as a special need, instead they blame my parenting. Even our own family members judge our parenting and think we spoil our children and "if only we would let them play out side and exercise more..." some say to our faces!

Whenever I see parents with children in wheelchairs, I feel instant sadness for them. I would never judge them in fact I think of them as saints. I think about their inconveniences in their lives and how much they have lost because their children are so different. And then today, when I saw the beautiful laughter come from the mother and daughter at the pediatrician's office, I realize that they have learned to deal with their loss and have chosen to accept all of the beauty. I am trying to do this with our circumstance. Still new at it. But I want that special bond with my daughters. I am going to have to work hard at it.

I bear this scarlet A on my chest. My name starts with the letter A and I like the color red. So there! I will just have to look at life differently. If you don't like me because of this A, then you don't get the privilege of knowing how mysterious and wonderful life on the spectrum is for our family!

There's a Weird Monster in the Pool

I can remember the first time I noticed my daughter being bullied and teased. She was five years old and she had autism, although I didn't know at the time.

We were taking a mini family vacation, staying in a hotel with a pool. Her younger sister was just beginning to walk and I was enjoying being a mom holding my one year old in the water with me playing motor boat with her. The sun was warm and its glare was somewhat blinding. Although not blinding enough for me to see my daughter, Sienna playing monster with the other kids in the shallow end. I was watching like an eagle and wanted to dip down, pick her up and protect her from the mean things the other children were saying to her and about her. I am not sure if she even noticed.

Sienna had blonde curls that perked up from the splashing waters. Her expressive blue eyes, round as saucers could tell a stories without her muttering a word. Strangers would often tell us how beautiful she was when we were out shopping or at the park. That is, when she wasn't throwing a tantrum of course! There she was, enjoying the summer day in the clean hotel pool. She was splashing around all snug in the inter-tube she called "Dragon."

And she was pretending to be a dragon too. She would hiss, growl, show her bare teeth towards all the other kids while they would run away from her, screaming. One little girl ran towards the small group of moms while we were all holding our babies together talking about how well our baby naps and eats. I heard her tell her mom, "That girl is so weird. She is like a monster!"

I couldn't detect if the girl was afraid or disgusted towards my little girl, but one thing was sure, I was in shock. I didn't know what to do, so I froze. I froze and I watched more closely. Sienna would swim towards a kid, put on a a mean monster stare and growl at him. The little boy didn't know if he should laugh or be scared but wanting to play along he let Sienna chase him. And, Sienna would chase him along with all the other kids in the pool. Holding her hands up, claws out as if to attack, she would run around the shallow end acting like a monster.

In attempt to help Sienna play with the other kids, I gave Sienna pool toys, flippers, balls, little sinking things. All ignored. Trying to distract her, I asked Sienna if she met any new friends. She would just growl at me in hopes I would keep playing monster with her. It was hard to get her out of the monster mode. I tried another approach, I tried sharing the toys with the other kids. I asked if anyone wanted to swim under the water and get the sinking pegs. They would. They would try to be competitive with one another. The same little girl who ran to her mommy earlier asked me what was wrong with my daughter.

Not knowing what to say, I said, "She just likes to pretend a lot. Don't you pretend?"

The little girl said, "Yes, but I think she is weird and she scares me."

Angered and saddened, I decided to get out of the pool. I continued to watch Sienna try to play with the other kids. I watched how the other kids would all get together and bond while making fun of Sienna. They would laugh at her and antagonize her just to watch her chase them.

"Time to go Sienna. Let's get out of the pool, honey."

It was a month after the mini vacation when I took her in to her pediatrician. She would be starting Kindergarden soon and she needed updated medical records. The entire time during the visit, she barked and pretended to be like a dog, albeit, a nice, gentle, loving dog. The doctor came in and I am not sure how the conversation got to the point for the doctor to use the "A" word with me but I will never forget her saying, "There is no doubt in my mind that your daughter has autism." That was July 2, 2007.

This post was motivated by a topic from a blog of a friend of mine. Please visit hellokittiemama at autismsucksrocks.com where she has written a post titled, "Hey Bully, You Suck!"

Relax Mom, Let Your Kid Be a Kid!

While driving home from a counseling session and lunch with some girl friends, I was enjoying the fall scenery and listening to the radio all alone, at the volume I wanted! When you have two daughters with sensory disorders, especially auditory processing, most of the time, the van needs to be a quiet place, free from audio stimulation, much to my own chagrin.

Feeling free and alive, my thoughts took me back to a scene from Finding Nemo.

Remember Marlin, the scared yet determined Daddy to Nemo when he is talking to the Daddy Sea Turtle, Crush? In a panic, wide-eyed and frazzled, as he is in almost every scene, he is worried for Crush's son, Squirt who just fell out of the current into an ocean abyss. Here is how the conversation goes:

MARLIN: [gasps] Oh my goodness!

CRUSH: Whoa. Kill the motor, dude. Let us see what Squirt does flying solo.

SQUIRT: Whoa! Whoa! That was so cool! Hey dad, did you see that? Did you see me? Did you see what I did?

CRUSH: You so totally rock, Squirt! So give me some fin..noggin..

CRUSH/SQUIRT: ..dude!

This picture paints the perfect model of my current parenting world. I am Marlin, neurotic, not able to fit in and meeting only friends that aren't quite my type like Dory or the sharks. My daughter, is little Nemo, cute and spunky, with a "Lucky Fin," (a/k/a Autism and ADHD and Mood Disorders) who despite her circumstances is making friends and growing up.

It was like God was speaking to me today on my drive home. He was saying, "Kill the motor."

Remember Nemo's first day of school for Marlin? I still want my little Nemo to go and play in the toddler bouncy area - not travel with the sting ray teacher to the drop off!!! What if she can't swim like the other kids? What if she needs a sensory break?

God is telling me, "Let's see what she does on her own..."

And, so, I will. At least I will try. Good idea God. Thanks for meeting me today and speaking in my language! You rock!

Are these Jugs Real? The Legacy of the Step Child Part IV

I am not sure if I will ever really know if I have the real Crazy Jugs or not.

There are a couple of pieces, trinkets that I recognize from the three bottles, but I think the three jugs that I have in my possession are not the original Crazy Jugs that my mom and her mother created. Ironic.

I do remember specifically asking for the Crazy Jugs during one of our phone calls. It was the time when my step dad asked me if I was interested in my mother's clothes. I said that I was not, but felt guilty about it. Like I was supposed to want my mom's size 3X older lady clothes that she probably bought on the clearance rack at KMart! Does that make me a bad, selfish daughter? She was always trying to get me to share her clothes with me. She would even buy two of the same outfits so she could keep an outfit for herself and give me the same outfit for my birthday. "No, I don't think I want any of her clothes, Tom," I answered. "I would like to have my Miami diploma and her Crazy Jugs though. They are probably in some of the boxes from the garage. I am going to try to come for a visit some time this summer for a few days and help you go through those boxes. I have to find someone to watch the girls though."

Not only did I have to find someone to watch my two children, ages one and four. But I also had recently learned during this time that my four year old daughter was diagnosed with Sensory Integration, ADHD and Autism. Finding someone to care for them would be challenging. I also had my own failed business I was trying to dissolve and we were in the midst of a move, buying and selling our house! Tom never seemed too concerned for all of my issues though. He did however keep some pseudo jugs for me. I found them in special boxes in the garage later that year that he so carefully set aside for me.

It was in one of those boxes I found the three Crazy Jugs that I have now. However, just as my step father hid my mother's real gold and diamond jewelry from me and tried to trick me with all of her costume jewelry, he didn't want me to have the original Crazy Jugs. My step father probably kept them or sold them for a quarter at his garage sale.

I am still so angry towards him. I know that he is elderly and that he loved my mom very much for 15 years. He was very special to my mother. He swept my mother's heels off the floor of single-hood and was a world traveling partner to my mother. I also recognize that he added value to my life in other ways along my journey. He made the opportunity for me to travel to Europe one summer in college. I made memories that summer that will last my entire life!

He was a good guy. He once was very accomplished engineer for the city of Cincinnati. But, with the stress of losing my mom and his years of life pushing upward to 80, the dementia has started to shrivel his character and his heart I once adored. I once admired him for his advice and would seek his guidance in the areas of my career and matters of the heart. He was the warm fatherly figure that my own dad could not be for me. He was supportive and stable for both my mom and me. He's pictured in my photos with me from my first college dorm room, graduation from Miami University, my first job overlooking Michigan Avenue in Chicago, my broken hearts from all the chaps before I met Fred, my courtship and wedding with Fred and the births of my two children. He has shared an important role in some of the most significant chapters of my life.

Yet, the role that he has played since my mom passed away has been far from fatherly towards me. More like a villain and a shrewd thief.

I haven't talked to my step father since we left last Christmas time. That was the time when I first learned about my mother's will. The will only allowed me to have her jewelry and day to day belongings. The day to day belongings that he had boxed up for a garage sale to sell shortly after she passed away.

There were a few boxes that were set aside in the garage and were labeled "For Andrea." When I saw the tattered boxes, I was hopeful and dare I say, even excited. Alone in the cold smelly garage, I smiled like a child who just caught her mommy's attention after months of absence and neglect. I had hoped that my mom had branded certain items that she wanted me to have someday. I was hoping to find special items from my childhood. And when I started to unravel the items in the boxes, I admit that there were a few items that indeed took me down memory lane.

The large green Mother Goose book that my mom and I read every night before bed was in one of the boxes. That was the same book that I had resting on my knee one wintery night as I hopped into the bed and the top corner of the spine poked my upper lip. I still have the small scar underneath my nose. I can still recall my mom holding me like a rag doll as she ran frantically up and down the hallway not knowing if she should take me to the hospital.

Setting in the same box, I recognized some old oafy stuffed monkeys from my grandmother. She would bring me big stuffed monkeys she'd buy from the corner drug store just before arriving for her visits with me while my mother took weekend trips with her boy friends.

There also were photo albums. I was looking forward to spending time on those only to find out of the 20 albums, several of them were full of photos of my mother with male friends whom I didn't even know. The other albums are priceless to me - at least I think that is the way I am supposed to feel about photo albums from my childhood, right?

And, then there were a lot of other things in the boxes that I couldn't decipher. What were they? Were they garbage? And, why were these items marked just for me? Broken picture frames, papers from my mother's college days, reams of paper and notebooks from my step father's surveying business. And, at the bottom of each of these shredded, mildew-infested boxes, were droppings, maybe from rats, most likely from the demons who lurked around me while I tried to grieve and cry out to God to heal my broken tattered and wounded heart.

Needy. Control.

Needs.

Special needs? Everyone is special.

Too needy? Aren't we all?

Need a friend? But my friends are spread too thin as it is. I just moved here. Potential friends see my heavy baggage and they don't want to be friends with me. They all have their heavy burdens that they need to unload on me. So, I run away from them, withdraw into a cave. I only come out when I can leave my heavy load behind in the darkened lot that God has given me for today.

Today? Only today? Hoping for a brighter tomorrow? But when? Then what?

Oh how I wish I had more control. Control of my own life. Control of my thoughts just long enough so that I could put away the dishes without being interrupted or distracted with another task in my brain. Control over my home so that I was organized and my home was clean and tidy. Control over my temper so that I didn't explode like my kids with autism and ADHD! I wish I had control over my body so that when I cut back on calories and added additional exercise I would actually lose weight and feel some sort of reward.

Rewards. I thrive on them, just like my kids. But I can't organize our lives long enough to make a reward chart. If and when I do, I can't follow through on it. It falls off the fridge and gets thrown away. Or, my kids scribble or rip it. Or, when I try to show my kids the reward, I can't capture their attention long enough.

I could use a reward. Not in the form of stickers though. More like vacations, weekend getaways, date night, manicure or pedicure, shopping for a winter coat that I have needed for three years, someone to just call me and let me ramble without me feeling like I owe them.

Tit for tat. And that's that.

Sugar and spice and everything nice. That's what little girls are made of. Yeah, right. Whateves.

What about the effect that autism, ADHD and mood disorders have on the parents?

I think if I had a job again, it would give me structure, some form of control, self esteem. It would give me a break. It would give me adult interaction. It would just be a Band-aid. A Band-aid for this big boo boo that God is allowing me to suffer through right now.

It's back to the basics for me for today.

"Out for a Walk, Be Back at Noon"

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.

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...

It's All My Fault!

There is a small voice inside my heart and soul that speaks to me at times and it shouts at me, "It's all your fault!" Sometimes this voice is from the actual words family, friends and teachers have suggested to me. And, for some reason, I have held onto them. I need to let them go. Sometimes it is just pure paranoia.

Regardless, it is a voice I am always trying to drown out. And, at times, I listen to it and it makes me want to cave in and go away on an emotional coma.

As a mother to two children on the spectrum, it is unavoidable to blame yourself at sometime or another, especially in today's world. If you are a parent with a child on the autism spectrum, then perhaps you too hear a voice that distracts you.

"It is all your fault that your daughter has so many problems. And here is why:
- You didn't take your prenatal vitamins
- You worked and traveled too much when you were pregnant
- You worked and traveled too much as soon as you had your babies
- You had a party when Sienna was only two months old and let too many people hold her
- There were too many flashing lights and electric vibrating contraptions in her baby toys
- You let her sit in her bouncy seat too much
- You nursed her laying down too much, you should have cradle nursed
- You only nursed her for nine months and then you let your milk dry because you didn't want to pump while at work any more
- You partied too much in your 20s
- You were a difficult child so this is pay back time. HA HA HA (But it isn't funny at all.)
- You eat too much and you're too fat and lazy
- You colored your hair that one time when you were pregnant
- You gave Sienna Baby Tylenol too much when she seemed cranky or in pain
- You let your baby watch too much Baby Einstein's
- You didn't spend enough time with your baby even though when you tried, she seemed like she always ran away from you
- The sound of your voice made the baby scream and run away - the sound of your voice makes everyone run away
- You didn't know how to be a good mom so now your child is depressed
- You don't nurture your child like you should and now she is lonely
- You don't spend enough time with your girls even though you left your career to be a stay at home mom and play games, read books and do crafts with them whenever they want!
- You don't spend enough time tucking your daughter in at night and that is why she angrily cries, "I don't want to be alive!" at the age of 6 after you say your final, "Good Night"
- Maybe you didn't read enough to her when you tuck her in - even though you have read to her 1 - 5 books nightly since she was in your belly
- No one else thinks anything is wrong with your kids - they only see a mom who lets her kids get away with too much
- You keep going to doctor after doctor, someone is bound to tell you your child has autism
- Don't you hold your kids?
- Your toddler seems hungry, even though she ate two bowls of oatmeal for breakfast and a granola bar before we came to the store
- Your toddler is just tired, even though, she got a solid night of sleep and her nap time isn't for another 3 hours
- You should tell your children to behave
- You should be a better mom
- You should try to be more rational when dealing with your daughter. After all, you are the parent.
- Why do you worry so much?
- Why are you so hard on yourself?
- Why don't you try to do this?
- You should read this book or that book or this therapy or that therapy, have you tried the special diet?
- Maybe if you tried doing this, she will get better
- Your kids will outgrow this
- This is just a phase
- You have no control of your children
- Other moms talk about you behind your back and think you probably abuse your children
- Your daughter doesn't get invited to parties or play dates because she is probably contagious
- We don't see anything wrong with your daughters; they seem like typical children to us. Maybe you expect too much from them
- You need to love your kids more, they are just kids
- All kids chew on the tables and chairs and books and lick the windows and door knobs
- Maybe you feed them too much sugar and food dyes
- Kids are just kids
- You are blowing it out of proportion

And, I take a deep breath. I remember that God has trusted me to care for these special girls. We are on a different path than most and I believe that God has a special plan for these children and for me. I am taking it one day at a time. God knows my story, he is the author of life. He knows me and my girls and He will guide me as I embark on this journey of motherhood.

Ambition is a Virtue?

When did people stop thinking of ambition as a sin and start thinking of it as a virtue?

This was a quote from a movie we watched last night, "The Other Boleyn Girl." I have struggled with ambition my entire life. In fact, I was raised to believe that if I wasn't ambitious, then I was lazy. And lazy was a sin! I would cram all sorts of activities and sports and social outings into my schedule. I never had time to breathe or think.

That belief system was only fueled more once I entered into my career. It was because of this ambition, I wasn't able to enjoy being a woman or being pregnant. Anything that slowed me down was not an asset but a liability. Being pregnant brought along morning sickness and big frumpy clothes. This only put my once fast track career path on a slow detour. I had my eyes on the prize and pregnancy did not become me. The prized package I had my focus fixed upon was filled with nice designer clothes, hot of the racks, designer purses and vacations to places that some people couldn't pronounce, new clients with the top 100 Fortune 500 companies and invitations to the hottest weddings and fund raisers. I believed that to achieve one of these items from this wish list, you had to have all of the items.

I never quite achieved those extravagances. God had another plan for me. He loaned me two beautiful children. He allowed me to name them Sienna and Sarah but he created each hair on their heads and hand crafted the very nature and laughter of both. Both girls are high spirited with bouncy blonde hair and bright blue eyes that can see the bottom of my soul. They are both on the autism spectrum and they raise the bar when it comes to being challenged as a parent. They slow me down. They force me to have true friends who are ever accepting. They remind me that love from the heart is greater than the clothes on our backs. They teach me new things every day about what is important in life.

They have changed my value system that I had clung onto since I was born until they were born. They have made me realize that ambition is not a virtue. I now strive for the fruit of the spirit which I believe are the truest of all virtues. These are love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. I want them to bear the fruit in their lives so I am forced to bear these fruits in our home. These virtues do not come easy for me. I was not raised to understand the fruit of the spirit although that is what I truly hungered for as a child. And today as a mother, my ambition is now to slow down and consider the fruit as the prize and legacy to pass down to my children.

A Mommy and Boo Boos

The picture in my mind of a mommy caring for her child when she has a boo boo is seeing the child, sitting on the toilet, seat and lid down of course. The child sobs inhaling a quick one-two breath as a tear falls from her eye onto her leg that is propped up onto the bathroom sink. The mommy has her organized first aid kit ready and applies the antibacterial ointment and then a Band-aid and softly gives the boo-boo a little gentle kiss. The kiss instantly heals both the boo boo and the anxiety of the child as the daughter gets up, says, "Thanks Momma!" and then runs off to play with the harp music fading off in the distance.

OK. So, maybe the harp and the "Thank you" is a little over the top, a girl can dream can't she?!

This girl is learning that what I imagined as a typical mom healing a typical boo-boo to a typical child is merely a fairy tale. As a young toddler, Sienna was very accident prone. She would walk forward, with her head turned backwards and run straight into a glass door knob. She'd panic and scream and run away and hide far away from me. I would try to run to her to console her but then I realized that I just caused more anxiety to her little two year old body and brain that was just learning how to make sense of what just happened. I still get upset when I realize that I can't help my little girl and her boo boos. I have bought all kinds of boo boo packs bulk packaged Band-aids. But, even these don't provide any relief to Sienna when she falls or bumps into things. It is so heart wrenching to be a mom and not be able to comfort my child when she is hurting.

Take yesterday for example. Sienna learned to ride her bike without training wheels last week and we are proud as peacocks for her. She just wheels around and navigates her bike like a six-year-old-on-a-purple-princess-bike-professional. Yesterday as I was getting dinner ready, the front door flew open and I saw Fred holding Sienna like the men held Marilyn Monroe in "Diamonds are a Girls Best Friend." Only, Sienna wasn't draped in diamonds and a red dress, she had her bike helmet on and her butterfly polka dotted sun dress was covered in dust and gravel. She screamed like she was dying so I quickly ran to her. Fred dropped her off on the couch for me to do triage and he left to go get the bikes he had to leave five blocks down the street. Sienna wailed. Her sister Sarah rushed to see what was wrong and started crying at the sheer intensity of it all. I put on my sincere and worry face and asked her what happened. She screamed in a "scratchedy" volume that only a mother could love. It reminded me of the small penguin on Happy Feet, but that is another post for another day.

I told her to try to relax while I sprinted to get my handy dandy first aid kit. OK. So, I am not that organized at all. In fact, the only way I was able to locate a Band-aid was because every time, I mean EVERY time I go to the grocery store or drug store or any store, I buy Band-aids. My daughters go through Band-aids like they go through water. They love Band-aids and tape in fact. Don't ask me, it's a sensory thing... Any way, back to the trauma. So, I grabbed the box of Band-aids and with a leap and a wink I looked Sienna in the eye. I told her I would put a little ointment on the Band-aid and then put it on her knee. You see, with kids on the spectrum, you have to constantly tell them what is happening next. That way, in a world that seems so out of control for them, they are able to have some heads up to what is about to happen next. So, I was just remaining in step with my usual form of communication with Sienna when she let a demonic yelp and appeared as though she was going into convulsions. I tried resting her fears with both hands up to show her I had dropped the weapons, er... I mean the Band-aid and ointment. She then kicked at me, not caring if my face was in the way and shouted, "Get away from me! Get away!" She repeatedly screeched out "No! No! NOOOO!!!!" in a sort of rhythmic chant as if she were being attacked in a horror film.

All I wanted to do was put a Band-aid on. I have never tried using any strong burning antibacterial medicine that might have given her a fear to all future medications. I tried to comfort her with just a wet paper towel which she threw across the room. "How about the soft Nemo boo boo pack?" I gently suggested. Again, "No! No! NOOOOO!" Coupled with a "GO AWAY!!!!!!!"

So, I ushered her little sister and we walked out of the room. I tried to go back to fixing dinner all while Sarah kept asking what was wrong with 'SeeStu." I repeated her question to her with clear pronunciation. Another method I practice in trying to help my two year old's speech. I said, "What is wrong with Sister?" Ummmm....

That my friends is a loaded question! Oh, where do I begin?

And today, I leave you with this quote, "I just want to be a mommy who kisses her little girl's boo boo when she falls off of her princess bike. That's all I want. Is that too much to ask?

Somewhere

Somewhere, there is a mom who has a child with Autism.

This mom could be your cousin or niece, a neighbor, lady at church or in front of you at the grocery store. You might run in to her at a soccer game or at a new mom's play group in the neighborhood...

For full view, click here >>>

My Plan VS. God's Plan

We had Sienna (now age 6.5), moved to far west side of the Chicago and bought our first house. Lived there for a couple of years. I started freelancing and that grew into a consultancy, which meant the same thing, I was just able to charge more and feel more important about myself. I had offices all over the place, from the 83rd floor in the Sears Tower to a cubicle in Oak Brook. I enjoyed traveling for business and went to DC, San Diego, Las Vegas, and New Jersey frequently. I was very ambitious and felt more in control of my career than in motherhood. Sienna was in day care and Fred started working at Elmhurst HS. We then moved to Oak Park and Sienna has having a lot of troubles in school(s). So, we had to have her assessed and she received special services to help her with her behavior and sensory issues.

While Fred and I celebrated our 5th anniversary in Aruba, we got pregnant with Sarah. I was scheduled to develop a large trade show exhibit during my pregnancy and when she was 6 weeks, I brought her along with me to Toronto. I was absorbed with being successful and thought that God had a plan for me to grow my business and help other women, especially my own daughters as they grew older, flourish in corporate America. I had a corporate board of directors and we met monthly to help meet my business objectives.

Little did I know that God had another plan for my life. Last January, my mother called me from ER AGAIN. You may remember that she had a lot of issues. One of the most annoying was that she was a hypochondriac. She had checked herself into ER on a monthly basis and this time seemed to me like just the same as the other times. However, an ER nurse called me one Sunday morning while we were at church. We started attending Willow Chicago, one of Willow Creek's satellite churches that met in the loop in an old theater. The nurse told me that due to my mom's diabetes and other ailments that she is having difficulty healing from a bad case of pneumonia and it is possible that they may have to put her on a ventilator. After talking with Fred, we decided that I would take a trip, once and for all, to see just how severe this particular drama trauma really was. Five hours later, while driving down to Cincinnati, she had been placed on a ventilator and was in an induced coma. She finally passed away about 6 weeks later after I convinced my stepdad that she wasn't going to get any better.

During these 6 weeks, I spent a lot of time in the hospital with them. I didn't realize it, but my value system was really being challenged and turned upside down. I reevaluated the quality of life, motherhood and self care. I no longer thought about the new patterns on this season's Coach bags. One evening, after we met in Cincinnati to turn off the ventilator, I had about 20 voice mail messages. Some of the messages were from clients who knew where I was and what I was doing on that day yet they still thought their needs somehow took priority over mine on this dark day. I told Fred that I needed a break and didn't want to return to work for a while. Being the boss of your own agency does not allow for any sick days and there are certainly no days available for bereavement.

There were also no days available for childcare issues. And it seemed that I got weekly phone calls from Savana's preschool about her behavior. As one discussion was said, "She is a danger to herself and other students around her. We need you to pick her up." Another presentation to a team of directors at a Fortune 500 that I had spent months pursuing - cancelled. Vaporized just like that! I just couldn't keep up with the pace of my career. I slowly watched it fade away in the distance behind me. As I pursued my exit strategy, Fred and I decided that I would stay at home with the girls. We were paying over $1000 a month in childcare and we would still need to downsize and move to be able to live on his teacher salary alone. So, we sold our gorgeous home in Oak Park and moved to rural Ohio into a house in Laketown.

During this transition, before we made the big move, I thought I would tap into the rich medical metropolitan resources to see why Sienna was having so much difficulty. Through this time, we received a diagnosis of ADHD and Sensory Integration. After we moved to Ohio, we then got a diagnosis on the Autism Spectrum which is probable Asperger's. Our youngest daughter, Sarah is only two now and is also experiencing very similar sensory challenges.

Our lives have changed so much in the past year. One of the million things I have learned through this chapter of our lives is that you cannot predict or control your life, you can only manage how you respond to it.