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 >>>

8 Things I have learned on Jon and Kate + 8

One of my favorite shows is Jon and Kate + 8. I enjoy the personalities of Jon and Kate and their little children. I cry and laugh, but most of all, I learn a lot from it. And, being a mom to two children on the autism spectrum, I need all the encouragement and parent tips I can get!

Here are the top eight things the Gosselins have taught me:

1. Free tummy tucks do come true.

2. If Kate can take 8 kids to a boutique to paint pottery, then maybe I can take my 2 kids too.

3. There is a family out there with more shoes that we have.

4. Monkey Bread is reserved for Christmas mornings only.

5. Each child needs his or her own special day alone with the parents every year.

6. Having the kids sweep after dinner "may only pick up a couple of crumbs, but that is still better than no crumbs."

7. No matter how much I want more kids, seeing the clip of Kate's pregnant stomach is the best type of birth control ever!

8. You can still be a cool mom like Kate and not feed your kids SunnyDelight and fruit snacks.

Confessions of a Second Grade Closet Eater

I used to be a closet eater. I would not eat lunch at school or during slumber parties. From age eight until age 32, I would only eat when no one was watching me. To this day, I worry about what I eat in public.

All through elementary school, I would rush home from school at 3:00 sharp and eat all the food I could. Only so much so that no one would notice my bingeing. My mom and step dad used to have a large glass milk jug that they would dump their spare change into daily. I would quietly pour out the change and get just enough money to take to the Village Pantry or 7-Eleven down the street. That is when candy bars only cost 30 cents. I started getting my candy bar fix with the stolen spare change. Then, I worked my way up to stealing enough change to purchase an entire box of Little Debbie Oatmeal Creme pies. I would be ever so cautious about this addiction by hiding my wrappers carefully in the garage. This was age nine.

It was at age nine when my mother married her second husband, Graham. He had several children by previous wives. He was domineering and dominated my mother's every moment. My mother and I were best friends up until Graham came along. After all, after my father divorced my mom when I was two years old, it was just my mom and me, living together like roomies in college. During her single years, she dated a lot. And, just like a college room mate would, she'd bring her dates home with her. I think during these years of my childhood, I have more memories being with baby sitters. My mom would travel a lot with her boyfriends. After she passed away, I recovered many photo albums of romantic getaways along with boxes of love letters from these men, some were even married and others were her boss! While she lived foot loose and fancy free, I spent a lot of childhood with babysitters, my drunk grandmother or being sent away to summer camps at the ripe age of seven!

Now my own daughter is six and a half, I couldn't imagine sending her away to a camp or to stay with her drunk grand parents. (Fortunately, my children do not have any alcoholic grandparents so I don't have that as an option!) Another memory I have as a seven year old is riding the Greyhound bus back and forth from my mom's to my dad's! This was a four hour drive with a 'layover' in Cincinnati! I can still recall the mixed smells of cigarette smoke, toilet cleanser and the bus fumes. When I was seven, I thought I was so cool. I was SO independent and since I hadn't eaten all day with either of my parents, I was SO hungry. At the layover, I would buy one of every candy bar and I would stash them in my suitcase for late night snacking as soon as I arrived for my visitation at my dad's.

One night, I got caught eating candy at my dad's. It was far past my bed time, when my step mom opened the bath room door and I quickly hid the candy in my cheeks. She noticed the wrapper behind the toilet and scolded me. I can recall begging her not to tell my dad but she did. It was one of the most shameful experiences of my life. I just wanted to be loved and accepted by my dad and mom. And, unfortunately, I feel like my father has measured out his love for me my entire life based on my weight. He is in a wheel chair now, he comments now on my daughters' weight and what they eat. It saddens me so much! My father and his parents were also plagued with eating disorders.

I was in second grade when my mom started back on Weight Watchers. And, since we were BFF (that is current text lingo for "best friends forever"), she put me on the diet too. I'd go to all the weigh ins with her. We would go to the MCL Cafeteria where we were allowed to eat fish and green beans for most of our meals. This is really what did me in for a life long struggle with an eating disorder. The diet and rejection, not necessarily MCL's fish!

More about my eating disorders in future posts...

Facelift and Poser Poster

So, I told you I would be provocative and honest in this blog. And, since, the true me is superficial in the flesh, I thought it was only a matter of time until the true superficial "me" would reflect itself onto my blog.

Although I write from the true pains and turmoil of my heart, I still on the outside appear to be smiling. I want so much for others to be attracted to me and want to like me. So, I say hello, I smile, I shower, of course. I just don't know where to draw the line from being myself to trying to be what others want me to be.

And, here I sit, a newbie in the blogosphere. Still wanting others to be attracted to my blog. I found myself even 'dropping' by to smile and say hello in hopes they might come over to my blog and like me too. I even spent a lot of time and energy redesigning my Entrecard and banner to my blog. And, just like me in the flesh, my body and my blog are a work in progress. Neither will ever look as perfect as I'd dream them to, no matter how much I work at them!

My therapist says that I need to work on not worrying what others think of me. He explains to me that there is a spectrum of people. There are those who on one side live and make every decision solely based on what others may think. He nods to me, "And that's you. You are on this side of the spectrum." Then, he continues, "There are others who don't care what people think. They are rude and insensitive. They even give up their rights as parents because they don't care about what anyone thinks."

Why do I care what others think of me so much?

I do know that all that caring and worrying is wasted energy. I come home tired after being around people. If our kids are loud in public, I feel badly for the parents who look stressed from the noises - even if it was during a birthday party and the hostess gave my kids noise-makers. Come on! If your kids can't make noises with noise makers at a birthday party, when can they? If there is a new person in town and I don't reach out the her and put on my friendly welcome mat-like smile, then I feel bad for them. I feel like I should bring them homemade cookies and ask them questions about themselves. I am so made to do that. How can I change that? Why can't I just not care? I need to be more towards the rude and insensitive side of the spectrum, I suppose.

God, please help me to not care! Huh?

As I sign off for now, I leave you with this quote from the famous Popeye:
I am who I yam and that's all I yam. I even eat spinach ONLY when people are watching me so I can 'look' like I am a healthy eater. I really don't even like spinach. I am such a poser!

Friend or Foe? Tit for Tat

I have always found myself to be so outgoing and friendly. Lately however, I am starting to be more guarded when meeting new people. I used to enjoy meeting new people and making them feel welcomed. Perhaps I would reach out in hopes that I could impress them with my friendliness and thus, they'd like me. And, after many years of reaching out, maybe I am just burnt out.

Or, maybe being a mom to two girls on the autism spectrum has just worn me out. All of my energy from my internal social chambers has burnt out and I have to reserve my words for my own family members.

Maybe I am depressed.

I recall a telephone conversation I had before I moved. This took place right after my mother was put on a ventilator, a few weeks before she passed away. I was running my own business, trying to return phone calls from clients and colleagues. I had been away from work for a few days visiting my mother in the hospital while trying to keep clients happy and 'business as usual by speedy messages sent by my Blackberry.

When I would return home from visiting my mother and step father at the hospital, I would try to force myself to normalcy. I struggled because it was like my mom wasn't dead, or was she? Would she live? Why does my step father keep signing for more artificial life saving mechanisms like a ventilator and a feeding tube? What is my role as an only daughter? These thoughts took the place of my typical tasks of eating or sleeping. And one day, I remember that I could not even open the door to my van and walk in to work. I spent the entire day playing Bejeweled on my Blackberry. It was the only thing I could manage. The next day however, I was able to open the door from my van and move one foot in front of the other. A block later, I was finally at my office. Breathe. Breathe, I kept telling myself.

It was time to return the multiple phone calls from my friend-slash-client's messages that had harassed me for the past four days. Her name was Molly. I had worked with her since she first entered corporate America and had always felt a kindred spirit to her. She was young and ambitious just as I was and I wanted to help her achieve success in the same way I had hoped someone could have or would have helped me. She wasn't aware of my secret mission, it was between God and me.

"Molly? Hello. Sorry it has been a while since I have returned your call. My mom has been in the hospital."

She replied, "Yeah, I got your message about that," Right about now is when I would hope we could have talked about what I had been going through. Here was my chance to talk about it, to process it all just a bit. She then said, curtly, "Now, do you want to talk about your mother or can I talk to you about this project?"

This caught me by such surprise! When I first met her, her father had just been diagnosed with cancer and I had been one of her biggest supporters through all of it. Here I sit, holding the phone realizing that Molly was really not a friend at all to me. She was merely a colleague. In fact, ever since I started getting serious about my career, I had lost all possible opportunities for true friendships. Everything had turned into a networking opportunity. Church activities and barbecues were attended based on what potential prospects or clients might also be there.

A few weeks passed and so did my mother. No one sent me a card or note of sympathy. That was when I realized that I had nothing left in the windy city. It was time to move in hopes to meet some true friends with real hearts.

Three Questions of the Day

I have been exploring the blogosphere in attempt to learn how to better impress my readers so that I can increase traffic and maintain a readership. Through my dabbling, I came across a brilliant post that I found profoundly close to my "concerns du jour!" Here is a link but in case it isn't working, I have pasted the post along with my reply below also.

http://twurl.nl/0ukozz

Depression, Bipolar, ADHD, Autism...
Posted by Kate McLaughlin on June 20, 2008 at 12:05pm in Motherhood, Parenting & Family
I'm a writer, recently assigned 6 articles on mental health--very broad assignment!
I want to focus on helping families deal with mental health issues. Please share your thoughts...
On what mental health issues do need or want more information and resources?

Here is my reply, my burning questions:
WOW! Finally something on line that is resourceful to the specific needs of our family! My daughter has been diagnosed with Sensory Integration, ADHD, BiPolar/Mood Disorder, PDD-NOS/Probable Asperger's.

There are 3 items I am interested in:

1 - My mother has passed away but I also think she had very very similar deficits. As a woman who was not raised by a strong, healthy mother, how can I be a strong mother to my own child who struggles so much? How do I know that I myself am not challenged with these areas of concern both environmentally or genetically?

2 - How am I able to parent my child who has a diagnosis that is always changing? She is 6 and as her symptoms manifest themselves differently, her diagnoses have evolved too. I can't keep up with it all!

3 - Because she is so highly functioning and thrives in a structured environment like school, the school professionals do not validate or acknowledge our diagnoses. I feel like sometimes I have gone over the top in trying to 'prove something is wrong with my daughter' in order to maintain or attain services. For this, I feel guilty and sometimes wonder if I have read too much and met with too many doctors. Ignorance was bliss, I think...

Good grief

You ever have an issue that keeps coming up over and over in your mind? It's like you can't have any peace or progress until you realize what it is that is at the heart of the problem, yet you aren't even sure what the problem is exactly.

Here is one of those nagging self talk scripts that I am trying to get my hands on... I think I have it figured out, but it is like that Sudoku puzzle that you know you could solve you just can't find the time, or the right pencil or even the Sudoku puzzle itself.

I've mentioned in previous posts perhaps that I have two daughters on the spectrum. My oldest, Sienna, first grader has been diagnosed with PDD-NOS with probable Asperger's. She also has mood disorder (bi-polar spectrum) and ADHD. I have been on a roller coaster with her since she was about 2 years old, feeling like a failure, like nothing I could do for her was working. She was so 'out-of-sync' and so when I found the book, "Out of Sync Child," by Carol Kranowitz a few years ago, something finally clicked with me. I started the long journey of trying to get services and diagnosis's, let alone just basic acceptance of my concerns from my own husband and family members. Finally, after three years I started getting more understanding from family members. It took a lot of tantrums at family events for people to realize that there was any merit in what I was saying about Sienna. No one wanted to believe that such a bright and blue-eyed blonde little girl had anything wrong with her. All along, my parenting skills and credibility as a mother were weakened through every step during this three year journey.

Then, after Sienna's daycare providers really encouraged me to take the matter more seriously, I finally went privately to get medical diagnoses. In the past 18 months, we have had five professional diagnoses all pretty consistent with one another: Sensory Integration, PDD-NOS, Probable Asperger's, Mood Disorders, Bi-Polar and ADHD. In addition, yet in opposition to these medical opinions, the school's psychologist has observed, assessing Sienna at the school and discovered that Sienna doesn't show any problems at all. In fact, the school professionals claim that she is a bright and cheerful girl that perhaps "her mother is in need of counseling and parenting classes."

And, here we are a year later, and I realize, I do need therapy and parenting classes, ever since the school's assessment in fact!

Every day, I fight with my thoughts and feeling about my daughter being on the spectrum. Is she? Most of the time she is fine. We've learned to adjust. We don't do any thing that will be unpredictable or pressure her socially. So, I can't tell. I am going nuts trying to figure out if something is wrong with my daughter. If so, what exactly. And, once it is determined what, then, how will I help her?

I realize that I am thick in denial. I am also so angry. I have become hardened.

And then, a light bulb went on! It was an ah-ha moment yesterday while we took a day trip by train to Chicago. Sienna was not in her normal element. And, when she isn't in her element, her quirks are more pronounced. She acts strange, says weird things, has odd gestures. She doesn't even walk normal. When she was younger, she would act like a dog as a coping mechanism. Now, she acts like a baby to cope in difficult situations for her. She talks like a baby, wants to ride in the stroller and cuddle, just like a baby. I even made a new age appropriate 'blankie' for her so she could have her blankie in times like these. Frankly, I allow it because when she was a baby, she didn't really sit still in a stroller and didn't cuddle or talk much.

I found myself growing so angry during the train ride. I was so irritable with her. I was so mad at her for acting like this. I was mad that we couldn't do any family fun activities any more. I feel so judged by strangers everywhere we go. Most of all, I was disgusted at myself.

Why do I have to be so superficial? I have been a born again Christian for about 13 years now. I was such a strong follower before having children. I was so close to God, my heart was tender for Him. Now, I am so hardened. I don't even feel comfortable going to church, partly because our children on the spectrum have so many challenges in a church setting, but also because of the condition of my heart. I am starting to cope in unhealthy ways myself. I am drawn to cocktails to relax me and other social subtleties that are not Christian-like.

And I really do want to be that caring, loving Christian woman that I once was. I don't want to be cursing at God for giving me children who are so difficult. Feeling so inadequate for this feat, I let out a yelp of a prayer and I heard God telling me that I was in His Hands. I was just going through the valley of grief. I still am in denial. I am still in the anger phases. It is difficult to have a clear journey of grief with raising children with special needs like what Sienna has because every day is different and I will not know what challenges we will face until we are face to face with each challenge.

I have to trust God even more in the daily crises of raising my kids. More than the typical family would. And, that is a blessing. At least that is how I am seeing it in this light bulb moment!