Go Fly A Kite

What do you do when it is a warm sunny 75 degrees and windy March day in Wisconsin?

Go Fly a Kite


With Becca's new Scooter she is enjoying the new found freedom to do all the things she would miss out on because of fatigue. I won't mention it to her that all this reaching is good therapy for her weak upper body strength.

The Weekend

The Beckster had a wonderful few days.. Those times when she has good days are so few and far between especially in the winter. One those good days she pushes herself and does not quit. She wanted to head out of the house, the sunny 40 degree weather gave her a hiatus from the hurting the cold and dampness can put in her joints and her muscles. You see everyday her little body hurts from the repercussions of her Noonan Syndrome. The doctors do not understand what others with the syndrome are describing, the leg pain, the burning, the constant headaches and the fatigue that many days allow her to just sit and vegetate. Add in her immune problems, everytime she goes out, she picks up each and every winter bug. For the past six years when she has been home for school, her winters have kept her healthier. But she still gets some of them but not as severe.

Friday we began the quest to Walmart to get her long awaited Space Buddies DVD. She had her Best Buy ad to price match at Walmart, found the coupon on line for saving $3.00. She had discovered that she had neglected to enter all our Disney Movie Rewards Points on the Disney site and spent a couple of hours entering them all. All 30 plus movies are now points on line. While entering points Beccas obsession for stuffed animals was fueled by the discovery that when you buy Space Buddies and enter your points, for the price of shipping and handling she gets two dogs free. We were off on a mission to Walmart for her DVDs.

At the register my tiny young lady caught the cashiers and customers off guard when she pulled out her ads and was tauting all the price match and coupon jargon of a thrifty expert. Her little professor legalistic autism shows its colors. The cashier remarked that he had never seen a kid price match before. Here we go again, they judge her smallness, they see her size, her frame and judge her to be ten again. It hurts her everytime someone unknowingly mention her age. She politely with a snap let him know that she is not a kid, and I explained that Becca is 19 and has a Noonan syndrome and has autism. So much for medical privacy, I have learned that in order to educate others and protect Becca I have to explain. It hurts her so much, people see her as a child, not the bright young adult she has become and no matter that it has been her whole life that no one will believe how old she actually is, she has never gotten used to it. I have taught her how to handle it, but in her heart, it is always a reminder that she is different.

The cashier caught me off guard as he explained he has aspergers and we all talked about his job and how he never thought he could make eye contact with people and chat with strangers but after high school he learned. Becca had listened intently and this young man made quite an impression on my daughter. She told me that she wished she could work at a job like Walmart, but her elbows wouldn't allow her to do the work. Her hands freeze, her elbows have contractures. She wants to work, but her tiny frail body will not let her.

Saturday she was out and about. Becca was out with me double coupon shopping impressing me with her quick math and money skills. She was finding deals for me, she had memorized all coupons and while I fumbled through my coupon binders she knew which page, how much everyone was and in a snap figured out how much everything cost. I still cannot believe, that I had struggled for over four years to help her memorize the her math facts. But on just one day it all clicked and she was able to memorize addition, subtraction, multiplication and division in just one week. She is fast on her money, she had spent an entire year collecting change with her ATM bank counting her money. Everytime she added a penny, nickel, or a quarter she started all over again. The practice has made her a mathmatical whiz, it was all in her own time, in her own way, and she learned. It amazes me, I am thankful, this was a child who was without oxygen for over ten minutes when she was two and a half months old. She had to learn to move her body again and the doctors told us she would have permanent brain damage.

She was so much help. She had the energy to help me unload the cart, and matched up the coupons with each item. When I needed something she ran to go get it. Becca running is almost unheard of, she rarely has the energy to do it. But Saturday was a good day. We came home and Detamara and I unloaded the Sequoia of my frugal finds while Becca recharged her batteries only to have her ready to head out somewhere. Somewhere? we asked. Jim and I knew she was wanting to just be out while she could and we headed over to Walmart to let her cruise the store.

We had nothing we had to get and Jim and I remarked watching her walk away how independent she has become. I remember a time where she would not venture from my side, her anxiety was always in control. She needed Mom. She did not need either of us. We watched her walk and with seeing her walking in open places and from behind that we realized that something is remarkedly wrong with her gait. She is limping severely. Last winter she had spent months in her wheelchair, hours of therapy for a tightness in her hip. She had had a joint bleed and she could not bear weight on it. A friend mentioned Becca's limp to me on Sunday and with all of us noticing the problem and her inability to do stairs of late, I will reconnect with the Rehab Doctor. Here we go again, another problem, another try to figure out how to help her. There is always something new with Becca, to understand, to support, to intervene to not loose ground. But as always, we live today and are blessed that she is still here.

Sunday she was tired, she had pushed herself over the edge and all that walking. She has a new scooter but the door latch on the Sequoia is broken again and we can't carry it with. I know that part of her next challenge is to learn that balance, to not push herself so far that she pays the price the next day, but when those days are so few and far between of late, I can't really blame her.

She spent the day reading and writing on her facebook. Facebook is her connection into her siblings and connecting with her few friends. Becca's life is lonely and isolated, it helps that she has a large family. They love her and are patient with her loneliness and obsessiveness.

She reconnected with a long lost friend. Inviting her friend to the movies Sunday night. She finally had felt well enough to go see Marley and Me. I have been wanting to take her since Christmas vacation but she never wanted to go. It was too cold and she didn't feel well enough to try. Becca loves the book, she listened to it while memorizing the words when she picked it for our next home school read. She loves Marley and dogs. Marley had arrived at in our quaint little movie theater just in time for Becca to get out on a warm weekend. Quite often on Sunday nights we like to catch a $5.00 movie to support the little theater and Detamara was herself and had to be forced to go to a movie. My daughter the homebody had to go out. With Dee's Fetal Alcohol Syndrome she likes home. A teenager who likes to be home and has to be grounded to go out? Her psychiatrist told her she has to go out and try new things. While Becca longs for wanting to go out with friends, Dee always has a reason why she can't meet up. Becca was excited and was counting the minutes and we had to push a grumbling l6 year old into the car. The two of them met up with Becca's friend at the curbside and the girls ditched their Mom and Dad while we paid for the tickets.
She was off, chatting away and Dee followed.

Jim and I teared up, Becca was at long last doing something with a friend. A moment which never happens.

She had what others take so forgranted, friendship and being included. By the way, Detamara as always after the fact had a great time. My remark, I told you so.

Who Cares About Me

written in 1992 on behalf of my daughter Rebecca

WHO CARES ABOUT ME

I am but a little girl
Who's life has taken a different twirl
I am disabled, that's what I'm labeled
I am trying so hard to be able.
I am fed different than my friends each day,
for me it is the only way.
Mom worries for that day,
that nobody will want or care to pay.
WHO WILL FEED ME?

They say dollars have all but dried.
They say everything needs to be cut.
The programs that help me have to be shut.
WHO WILL PAY FOR ME?

The doctors and home healthcare help me out.
My therapies and medicines I cannot be without.
My braces and wheelchair help me about.
My glasses I cannot see without.
WHO WILL CARE FOR ME?

School budgets are already stressed.
My needs are trying to be met.
It costs a lot to educate me.
With so many students,
How will anything be left for me.
HOW WILL I LEARN?

I am a little girl who fights to be alive,
But without healthcare, I won't survive.
With all the wonderful care
I have thrived.
My family and I have always strived.
WHO CARES ABOUT ME?

Without help we won't be able to cope.
We cannot give up hope.
There is a choice.
Just listen to one little voice.
WHO WILL HELP ME?

I am just a little girl who wants to be,
as happy, healthy, the best little girl I can be.

copyright 2006 Ann Yurcek
An excerpt from Tiny Titan, Journey of Hope

The Cost

This weekend I was visiting my favorite frugal websites and discovered a post about a family that is auctioning off their belongings to pay for therapy and services for their two special needs children. The website asked for people to help by donating a couple of dollars to defray the cost of their childrens services. See the families story here

As I read the comments, I was heartened by messages of those individuals who donated, but I was struck by the misconceptions of several of posts. Several thought they did not need the help because early intervention and the schools would provide therapy. They thought they were begging for help or using the media. But I understood their dilemma. I know just how hard it can be to obtain help as I have often had to battle insurance companies, schools, bureaucratic red tape for Becca and also my adopted children with Fetal Alcohol Spectrum Disorders.

Years ago when Becca was a baby, we had insurance, and found ourselves the victim of two insurance companies and no one would claim her, my husband would lose his job because of our baby's bills. We had to fall onto Medicaid and into poverty to get Becca's hundreds of thousands of medical bills paid. I was paying for daily parking at the hospital and after months of not eating to pay for gas and parking, someone finally told me that they had forgot to give us our free parking voucher. Jim and I were skipping meals in order to give what little food we had to feed our five other children. I just told them I would eat later and dole out the rest onto their plates. Our heat was turned off, we boiled water on the stove to bathe our children and wash dishes. Minnesota falls are seldom warm and our heat was finally turned on right before Thanksgiving when we were finally reimbursed for our mileage to the hospital. We had to live on a mere pittance to qualify for Medicaid at that time and only allowed $800 a month for a family of 8. Our house payment was $822.00, we still had other bills. What were we to do? We did whatever it took to help Becca.

No one told us about other programs, I had to learn as I went. The complexity of programs, what it takes to qualify, paperwork, appointments, luck of the draw when it came to waiver services, all just to help our Becca. I had to do all this while in crisis with a critically ill baby, and five other children who needed a Mom. There was not enough time in the day, and in time I learned that my job as a Mom was first, but I had to have another full time job, advocating and fighting for my daughters care.

No one knew. Those closest to us were unaware until years later. Inside the walls of our suburban home we were struggling, we were ashamed that we could not afford to pay for the care of our sick baby. We were judged by the workers at the social services office that we did not belong there, we had a job. We were judged by our neighbors for not driving the newest vehicles and our children did not have all the latest toys, sports and classes, my children skipped lunch because they did not want to be teased because they were on free lunch. Reaching out for help is not easy. It takes courage.

We had helped Becca survive, and I fought long and hard for her care. The medical world has in recent years become harder to navigate. I never used to have to work so hard to get what she needed, but today it is becoming increasingly complicated. When I entered the mental health when we adopted our 5 children I never dreamed it would be this hard. It is literally impossible to get the therapy our children. When Becca was diagnosed as autistic it took 6 years of advocating and appeals to get the school district to acknowledge the diagnosis.

Reading the post, watching the news article, I knew that I could help. I would help this family by acknowledging that our children's catastrophic medical and mental health needs are not being met. It takes a full time job, and often a law degree to find funding. Sometimes it requires creative ideas to meet our children's needs. I talked to a parent who has a little boy with severe cerebral palsy and she talked about the many times she has had a garage sale to raise money for something that he needed. She at times has had to do fundraisers to obtain a piece of equipment that neither the insurance company or the medicaid program would not pay for.

Doing whatever it takes for our children is just part of the job description. Sometimes it is fighting insurance companies, falling into poverty, selling off our belongings, going without. But what is the most hard part of the journey, the judgment of others who do not understand just how hard it all is. These tough economic times and our crisis in health care and mental health services and therapies for our children with special needs. The schools are stretched and it is becoming increasingly difficult to get adequate help for our special needs children. But those children grow up and we need to help them with the therapies, services, and teaching to thrive as adults.

What can we do to help? Sometimes it takes strangers to donate a few dollars, others to share a listening ear, sometimes just a hug, other times a bag of groceries or even buying a house for a family who lost everything due to children they raise. We need to speak up to reach out and care, to support, not judge or just ignore. A genuine smile when you see a special needs child or mom will go a long way to say you care.

Thank you to Angie at Baby Cheapskate for reaching out to extend a helping hand to this family and it is my privilege to help. I have offered to give anyone who donates $25.00 or more a free copy of our families story "Tiny Titan, Journey of Hope". I can help raise awareness of just how hard it all is and share the stories of our Angels who helped us along the way.

Anny