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...

Love Came Down: A Christmas Pageant

Been to a concert lately? Two of my favorite bands are Jars of Clay and Sixpence None the Richer. When I found out they were on tour, a Christmas Pageant, I begged my husband to get us tickets for my birthday present. So, off we went! And, let me tell ya, it was fun!!!

Here is a list of my top 10 favorite things from that night:

1. Remembering how I fell in love with my husband shortly after becoming a born again Christian in college. He would make me tapes from his CD collection and I loved listening to Sixpence! I was impressed that he had chick music along with all of his Christian punk like Five Iron Frenzy and MXPX!

2. Don't tell my husband, but I have a new crush on Dan Haseltine, the lead singer for Jars. He looked so cute in his trademarked black and white striped scarf!

3. When Jars of Clay played Little Drummer Boy and banged on the large white drum, lit with a simple string of lights in the center stage. Drummer Boy is my all time favorite Christmas song.

4. The book, The One The Only Magnificent Me that Dan Haseltine wrote. We bought it for Sienna for Christmas. It is perfect for a kid riddled with sensory issues, in my opinion!

5. The lead singer for Sixpence None the Richer, Leigh Nash. She looked great and sang even better! She has the most delightful, unusual voice. Every word she said or sang was like chocolate to my ears!

6. Leigh Nash's stage presence. She is about my age and she still looks fantastic. She had on a rocker jacket, tights, boots. Her hair was spunky and funky, just like her bounce while she belts out some of those hard to reach melodies.

7. Leeland's opening performance got us on our feet. They're the up and coming Christian band. Well, they are up and coming for me at least. The lead singer's brother plays the keyboard. He is a riot. You can't take your eyes off of him. They were new and somewhat fascinating.

8. Sara Groves song, Toy Packaging. Very humorous!

9. Learning more about the ongoing mission that the concert was trying to raise awareness and support. It is clled BLOOD:WATER MISSION. They had testimonials threaded throughout the show about this cause.

10. During pre-show, my husband and I sat in our Odyssey, sipping our Starbucks. I told him, I bet there are going to be a lot of young, hip punk kids at the show. He laughed and told me, "Honey, we aren't as young as we used to be." He was right! The crowd was peppered with gray haired fans from the 90s! There were some younger fans, but I think they were the kids or grand kids of the real fans there!

If you are interested in downloading the Christmas music from their Love Came Down tour, check this link out! You can name your price or send it to five friends and download it for free....

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

Mystery of the Glowing Hands

It was around 7:00 a.m. this morning, I had just finished trimming my husband's hair when I saw Sarah, closing her bedroom door, looking like a naughty puppy dog. Her chin down, lip out and big blue eyes looking up at me were a warning sign of the trouble of lawlessness that had taken place just seconds before. As she rubbed her hands together, I said:

You look like you have been naughty Sarah. What's going on?


Taking the first step to solving this morning's mystery, I turned the hall light on. Her hands were white, bright white and gooey. (See crime scene photograph 1 from post below)

The next step was towards her bedroom. As I opened the door, I noticed the door knob sticky and gooey. I said:

Oooo. What is this?


At first glance of the crime scene, I noticed her chair had been moved over the her closet where her clothes and diaper supplies are stored. And the room had a pleasantly fresh aroma. As I tried to place the scent, my eyes fell upon the suspect. Elmo. (see crime scene photograph 2 from post below) Sarah said:

Elmo's bottom hyurts.

AH HA! (see crime evidence photograph 3 from post below) It was Sarah and Elmo, partners in crime, in the baby room, with the jar of Butt Paste.

Mystery solved. Now if you will excuse me I have got a lot of laundry to do...

Crazy Jugs of Broken Childhoods, Broken Motherhoods

I can't organize my thoughts to get a post prepared. I have attempted a few times and just come up with scattered, random sentences that end up in the draft file.

It seems like I have not gotten my life back together since my mother passed away over 18 months ago. I wonder if I will ever be happy again. Will I ever be able to manage my life the way I want? It isn't like my life was easy or happy when my mother was alive. My mother and I didn't even have a good relationship.

Sometimes when I get flustered and frustrated at Sienna, I am reminded of my own mother and how similar their behaviors are. And no matter how I want to ignore this truth, I am just like Sienna and my own mother too. When I feel so disconnected towards Sienna, I can also understand how my own mother felt. She used to try to hug me and I would cringe. I despised her kisses too. She used to say that loving me was like loving a porcupine with needles. Now, when I try to cuddle Sienna, she pulls away. When I try to kiss her on the cheek, she wipes it off harshly as if she's angry with me. There is a significant difference between my mother and me though. I seek to understand my daughter's troubles. I keep trying to be knowledgeable, strong seeking support when needed. At least, that is where I am now. Who knows how much longer I can keep my character strong.

I confess that I am saddened by my daughter's inequities to love me, just as I am saddened by my own mother's inability to love me the way a child needed loved years ago. We all go through our own lives just to cope and survive and both my mother was and my daughter is just trying to get through it as best possible. I somehow feel like I am above the standard of just reacting innately to my circumstances. I strive for more than just survival. I strive for strength. Sometimes however, I fail. I weep. I wail. I am as sad as a small child.

I also forgive. I can understand how Sienna is troubled with her sensory disorder and moods just as I was as a young little girl. How I still am. And, as a mother, I can see how empty my love tank is and I am tempted to walk away, withdraw, regress just as my own mother did throughout her prime years of her own motherhood.

My husband interrupts my daze towards the long empty hall way where my daughter just walked through, down troddened and angered, disappointed once again. He asks me. "What are you thinking about?"

I respond, "I am wondering if I was unlovable. Was I so difficult that my mom and dad just couldn't love me when I was a child? Did they divorce when I was two because the stress I put on both of them? Am I still unlovable?"

Weeping on, striving for survival. Trying to stay above the standard of failure. Taking life one day at a time, one tantrum at a time. God, please help me to keep the standard high and love me just where I am.

And the Crazy Jugs reflect the disappointment. They want to be more than they are. They want to be treasures, yet, there they stand, dusty and yellowed with plastic beads broken. How did they survive through all the years of turmoil? How did they not get lost, broken fully? They survived. They continue to reflect the memories and tell the story.

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.

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.

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.