I just wanted to say how much I appreciate your comments and compliments. It means so much to me, by reading my stories about Audra, a little of her lives on.

Thanks so much!

Welcome to the Parallel Universe.

The Universe of parents with quirky kids.

Here everything is a little bit different. Nobody judges you, everyone just accepts you for who you are.

Here, nobody cares if you are wearing yesterday's sweat pants or what kind of car you drive, because here everyone is equal. Here everyone is different and that makes us all the same.

We inhabit this universe not by choice but by forced occupation. No one would choose to live here. But none the less we have learned to thrive and survive here.

Our Parallel Universe is made up of therapy appointments, doctor's visits, and stressing about how we may never fit back into that other Universe that we once belonged to.

That Universe where everything was "normal"

We may long for that other Universe from time to time, but those of us who have lived in the Parallel Universe long enough have come to see the gifts it has to offer.

It is not an easy place to exist, I would be lying if I said it was so. It is what it is and the best thing to remember about this Parallel Universe is that you are not alone. There are many who have traveled here light years before us. They are the pioneers, the survivors and one day we will be too..........

Let's face it there are some things that don't go over well with your "normal" friends no matter how you say it. I have learned this by trial and error over the years and now know it is best not to say anything at all, even when you know you are right. The "normals" will rip you to shred's for insinuating anything is wrong with thier kids and if there is something wrong they will find out sooner or later anyhow so why risk your friendship. These are the things I don't say!

1. You know I think Bobby is behind.

2 If you call this number you can have him evaluated.

3. Do you know about Early Intervention?

4. Maybe you should take him to a specialist, I can give you the name of a good one!

5. Have you checked the milestones chart lately?

Please let me know if you have more to add to my list. It would be fun to see how long we can get it.

One fine spring day, when Audra was about 3 years old little Dougy came to play.

He and Audra were good friends as his sitter lived across the street. Dougy was about 4 or 5 years old at the time.

On this day they decided to play out in her playhouse which her Grandpa Swan had built for her. It was a fine house with windows that had shutters that opened and shut and double wide doors that opened wide enough for her wheelchair.

The house was decorated with a complete play kitchen, pots and pans, toy food, dish's, a cradle with baby dolls and a little table and chair set.

I got them settled in and put on Audra's wheelchair brakes and went back into the house, (leaving the back door open) as they happily played.

About 15 minutes went by when I heard Audra screaming in pain! I ran out to the playhouse to find her in tears, yelling loudly. Dougy stood silent against the wall. "What happend I asked him?" scanning Audra to see if I could figure out what was wrong.

Dougy wouldn't say, I looked down at Audra's bare feet and noticed teeth marks on her right foot. "Dougy I said, did you bite her?"

"I wanted to see if she could feel it" he said

By that time Audra had stopped crying, as I explained to Dougy that "Yes, she certainly could" I brought them both back into the house and we found another acitivity to do. I chuckled later, makes sense, he just wanted to see if she could feel her leg's.

As parents we like to think that our child's siblings are bettered by the fact that they have a brother or sister with special needs.

They are more sensitive to people with differences, more accepting, more patient. We hope that they will grow into people who will vote for and support the rights of people with disabilities.

Sometimes we hope that they will care for our child with disabilities long after we are gone. Sometimes we hope that they will get out and never look back. And sometimes we neglect to see the impact that having a sibling with a disability can have.

Looking back on my now adult children's lives with thier sibling Audra, I am faced with the truth that her disability did affect them in ways that I didn't see.

Yes, they are kinder, gentler, more compassionate people. But they are also wounded. Her brother still shoulders the burden of being Audra's brother. Who at the age of 4 was having to fend off groups of children who would surround his sister and stare and point.

He, her hero would come to her rescue and yell at the kids, "It's not polite to stare" It was he who thought he shared every ailment that she did, he who thought her death was his fault and he who has suffered the most, or so I thought.

Without going into detail of his personal and grown-up life, I still see him strugle with the scars. He hides them well and is sucessful in his choosen field and independent of us, his parents.

My youngest child, was the one I thought was least affected by the impact of her sister's disability and ultimate demise. She had only been one year old when Audra died.

She had never really known her, a loss I now see as something she will carry with her the rest of her life. "I had a sister once" she will always say. The only memories she has of the time they shared are my own.

Her lifetime has been overshadowed by her mother's profound sadness and yearning for her lost sister. As she strives to make me proud of her, to be perfect, to be everything, and still she could not fix me.

And I did not see how hard it was for her to compete with a memory...

To acknowledge her grief was hopefully a healing in some way of the pain I have caused.

I work hard now to not make everything about her sister, "Audra would have loved this" I would say without even thinking how I was turning Jesse's moment into mine and my own loss.

I have learned to value each of my children and to let them each shine without the shadow of their sister.

Sometimes it is hard for me, but they each deserve the admiration of thier mother, they are each as important to me as thier sister was. I love them and I owe them that.

This was difficult to put down in words, to realize the impact I have had on my children. The impact that having a sibling with a disability and the death of that sibling has had on them.

Perhaps it is worth it, to see that they are great young adults, happy and sucessful and we have all worked hard to get there.

Perhaps it is worth it, if it makes one parent stop and think and do everything they can to help the "other" one feel good about themselves and find thier own way separate from thier sibling with special needs.

To be free......

Like many parents I hoped to find some treatment that would help Audra get better! Along with traditional OT, PT and Infant Development class I began to research alternative treatments.

My husbands family was big on Chiropractic Care, he had an aunt who was a Chiropractor and so one of the treatments we pursued was naturally this alternative. (Actually, now that I think of it, it didn't make much sense. You can't fix someones brain by cracking thier spine or neck) But desparate times sometimes leave you reaching for the stars.

I also found the program called Patterning, the premises being that you could retrain parts of the brain to take over for the damaged parts by repetitive movement and an intense program. The program we choose was not the most demanding program, but still we practiced it 5 days a week. We had 4 to 5 volunteers from church who helped us with the program. We did it for many years, although we saw little progress, the range of motion exercise's were good even if they only served to keep Audra stretched out.

Of course there were opponents, the most adamant was Audra's then OT from her program. "What, she said do you hope to gain from this?" I thought about it for a while, "Well when Audra is older, I will know that I did all I could to help her" "If I didn't try I would always wonder, if only I had"

Of course now I know that at this point there isn't much that can "fix" a child's brain injury. My advice for parents thinking of alternative treatments, is do your research! Know everything about the causes of your child's disability, don't do something invasive or that doesn't make much sense (and cost you a pretty penny).

Don't spend your child's life trying to "fix" her!

I am reminded of a man I once knew, he had cerebral palsy and had spent his youth being dragged from one healer to another. He had a terrible relationship with his parents and was bitter that they were always trying to "fix him" instead of just loving him.

I made it a point to just love Audra, fixing her wasn't an option, she was perfect the way she was!

Even though my youngest child was only one year old when her sister passed away. She has grown up knowing, caring and treating people with disabilities just like you would anyone else.

One of her best friends as a child was Timmy, although now both are grown she still drops by to visit him from time to time and we still speak fondly of the days they shared.

He is not convinced that the grown up photo's of Jesse are her and points to the photo's of her as a little girl and says, "That's my Jesse"

It was at one of Jesse's birthday parties at about age 6 or 7 or 8 that Timmy was one of the few invited male guest.

He was overjoyed to be at Jesse's house and repeated it several times. " I'm at Jesse's house!"

Jesse's friend Ali said "Why does he keep saying that?" In a catty tone of voice.

Jesse walked over to Timmy and put her arm around him, "because he's my friend and he's glad to be here, she told Ali and anyone else within ear shot, and if you don't like it you can go home!!"

"Yes, his mom thought, "Yes, I thought when I heard the story, don't mess with Jess!"

There were times (most of Audra's 12 years) when I was extremley exhausted. If the house was under control, I might lie down to take a quick half nap. A half nap is when you close your eyes to rest, but you don't fall asleep because you still have to be alert to what's going on.

These were times when Audra's younger brother Jake, took over (for some reason he had appointed himself not only the caregiver for Audra, but when his younger sister came along her's also)

He would decide that they should have a snack of Oreo cookies and milk, push Audra up to the table, gather the snack from the kitchen and go about feeding his sister.

Now feeding Audra was very tricky, first off her teeth only met so that she could chew well on the right back side of her mouth.

Secondly she had a bite reflex that could happen at any time and if you got your finger in the way, it hell'a hurt.

They say there is a special God for children and he must have been watching over the two of them because when Jake fed her, Audra never choked, and by some miracle he still has all ten of his fingers because she never bit him.

These were two things that Audra really loved, Oreo cookies and her brother, who was always there for her, Jake.

Audra was not what you would call an enthusiastic student. I imagine most of her frustration and dislike for school came from not being understood and overlooked.

Often people didn't understand that she was "in there" and just assumed her sounds were meaningless, when in fact she was often trying to tell the teacher that she knew the answer!

Is it any wonder then that she preferred to be home with those who understood her then at school, where she was mostly bored.

It was a wonderful teacher named Bill, who changed her attitude about school ( but it didn't go down without a fight)

Audra started in Bill's class the fall of 1992 everyones expectations of her had been low, so when she got to his class and found that he actually expected her to do something worthwhile (like learn) she was not exactly happy. "Won't do it Can't make me" was her motto for the year!

Because this teacher had a disability of his own he didn't pity the kids in his class (like so many others) but rather expected them to do what they could ( a new concept for Audra when it came to school) So when he told her to do her work and she wouldn't she got sent outside to time out. Now this teacher was a bit of a yeller, but Audra was pretty used to that (our house was never quiet) and so she wasn't fazed by Bill yelling at her, as I was soon to know.

Audra had a kid on her bus who had MD, so everyday I would check in with him. "How did Audra's day go?" he replied "You should have heard Mr. S. yelling at her" Oh God I thought, and what was Audra doing? (I imagined her in tears) "She was yelling right back at him". "Oh God, I thought"

Her first IEP for Bill's class I was taken aside by him ahead of time. "I want you to know that the first 6 months are really bad" Okay I said, "No, he said I mean really bad!

So at the meeting the first 6 months report was filled with things like. "Audra is rude, she doesn't show respect, she doesn't co-operate, she doesn't do her work . " It was one of those times as a mom that I just wanted to melt down out of my seat and disappear under the table.

The good part was that with Bill, (after 6 months) Audra's attitude about school turned around completely, she no longer hated school, was making A's in many of her classes and was treated just like the rest of her classmates.

I don't know if Audra was ever one of Bill's favorite kids (I think she kind of got off to a rocky start with him) but he certainly was one of her favorite teachers and mine.

I am grateful for all that Bill did for Audra, her classroom aids and her augmenative communication aid. Without them she never would have had such a great last year of school!

Thank you Bill for not kicking her out of your class and if it means anything "I'm sorry"

Audra was almost 3 years old when she got her first wheelchair. It was a loaner from Poplar Center. It offered her wonderful positioning and much better comfort then the umbrella stroller we had been using, which wasn't very supportive.

Of course my husband and I hated it!

Getting the first wheelchair is always a traumatic event for parents. It is giving in to the possibility that your child may never walk. It changes your life, because from now on every place you go people will stare at you.

We named Audra's first wheelchair Mr. Ortho, short for it being a brand called OrthoKinetic, everytime it sat empty in my home I would walk by it and kick it.

I would glare across the room at this thing that to me made the extent of my child's disability all too real. I hated it, I hated it!@#!

But wheelchairs are like bicyles, kids grow out of them and by the time Audra got her second wheelchair I had come to see the freedom that it afforded her.

She could sit up in it, something she could not do on her own. It allowed her to join in the play with her friends, to go to school, to just get around.

The wheelchair had become our friend.

Audra would go through many more wheelchairs in her life-time, all different types and styles and colors. The pink one was my favorite, I am grateful to the therapist who sent us home with that first loaner chair and I now remember fondly Mr. Ortho and the good times Audra had in that chair. A wheelchair isn't the worst thing in the world it's just a different way of getting from here to there.

Somewhere in a junk heap lies what is left of Mr. Ortho an old but not forgotten friend.

Parents of children with special needs get many mixed messages from people and institutions that are there to help them.

For instance just the other day a co-worker and I had a meeting in the city at the Regional Center's main office, a place I had never been before. After a harrowing ride on rapid transit (okay it was only me that was harrowed) we managed to get off at the right stop and exit the underground dungeon (station) coming up to the light of day on Market Street. Surrounded by the sights and smells of the city's semingly seedy side we took the wrong route and walked deeper into the depths of poverty. After an aburpt about turn we found our way to the street where the office building was located.

I noted as we rounded the bend that the location was a dead end street. Mmmm I mumbled out loud, what kind of message is that sending to parents? (your life is a dead end?)

Every time I visit the ECE Center on Tower Road and use the handicapped bathroom, I think of how that bathroom had once served as our Parent Group Meeting Room some 20 years ago.

We had asked for a space to meet in and the program director at that time gave us the unused bathroom. They fit a couch in there and made a box to cover the toilet, which we then decorated with a table cloth and ribbon. I wonder what kind of message was that program director trying to send us? (I s--- on you parents) Wow, I never even thought of it at that time, but it is a bit ironic.

Perhaps it was just a way to accomodate our needs, but when you really think about it, it was the wrong way to do it.

Yesterday on the news they said a new study had been conducted, calling for adults to get at least 8 to 9 hours of sleep per night. Anything less and it is considered sleep depravation. The long term impact can affect your health and your ability to function.

Those of us who have medically fragile children, or just kids who won't sleep know this state well. It is terminal with little escape, Audra's entire 12 years were a study in sleep deprivation.

A good night with Audra was being up with her 3 times, a bad night were what I referred to as "all nighters" with little sleep at all. Most nights it tended to be somewhere between 3 to 6 times a night.

After Audra passed away I had to re-train myself to sleep. I was so use to the abnormal sleep pattern she had shared with me that it was quite difficult to change it.

I remember a few months after Audra had passed. My husband came in to wake me up, "Are you going to sleep all day?" he said. "Go Away, I exclaimed through closed eyelids, Audra gave me this!

Sleep, some people might think it is over-rated, but those of us who are sleep walking through life know better!

It was a cold and snowy winter! Ha, not really, I live in the Bay Area, I just always wanted to say that.

It was a warm December Day when I decided to take Audra to the mall for her picture with Santa. We waited in line until it was her turn to sit on Santa's lap, she was so excited to see Santa and he was so nice to her. Her photo was so cute, we told Santa what she wanted for Christmas and I went to pick her up to leave.

When I went to lift Audra up I realized her fingers had become tangled in Santa's beard and as I lifted her and pulled, Santa's beard started coming off. I looked out at the long line of joyful children, thinking that this was the real Santa (not just some cheap imitation). I couldn't let it be ruined for them. I began working at Audra's fingers to loosen thier grip which were tangled in and clenched around Santa's beard.

As Santa frantically tried to hold his beard on his chin I was finally able to detangle Audra's fingers and yes, save Christmas for all the boys and girls at the mall that day.

Happy Holidays!

A bicycle built for 3? Well not exactly, one bike and one rugged, hard plastic bike trailer that seated two children is what we bought and modified when I had the itch to ride again.

With the birth of Audra's brother it became evident that if I ever wanted to ride a bicycle again I would need a bike trailer to tow the two of them around. This was before the trailer's and biking were very popular so we had to be creative. We took the head rest and side support off of one of Audra's old wheelchairs and my husband attached them to one of the seats in the trailer. A quick change of the strapping system and the trailer was set to carry Audra, as well as her brother safely, both in comfort and style. A big yellow flag was an added safety feature.

The trailer was easy to maneuver and it was great to have "wheels" again and to feel the wind blowing through my hair and in my mind I sang "happy trails to you" again and again.

I wrote this for the MORE News back in 1997. The first year of Audra's life I tried so hard to do everything by the book. To be "normal" finally I gave up on trying to be "normal" and found that doing what worked was easier then trying to conform to "normal".

Normal is a four letter word. Not technically, but, certainly when it comes to me it is. My brother once told me that I should dress normal and have normal friends so that I would "fit in," so I ditched my baggy hip hugging bell bottom jeans for form fitting pants with designer names on the butt. I gave away my tie dyed halter top for polyester shirts and lost my hippie friends for more "normal" people. (yes folks, it was the '70's)

When my child was born I checked her over to make sure she had ten fingers and ten toes, one belly button, and one nose. When I took her to the doctor he said that "she would never be normal." But I kept her anyway

So, when my children wouldn't sleep in their beds I let them sleep wherever they lay. My husband said that it wasn't normal.

When dinner time at the table always ended in a war over who would eat or not eat and one child regurgitating all over his plate, I let them eat in the living room on TV trays. But my father said that it wasn't normal.

Some time between the re-birth of platform shoes and the Brady Bunch I realized that it was just to exhausting to keep on trying to be normal. I liked the way my household ran, my kids quirky habits and yes, my bell bottom jeans.

Once I looked up the definition of "normal" in the dictionary. It said that it meant ordinary. I often think how bland and boring it would be to go through life simply being NORMAL!

If you have ever heard the saying "be careful what you say, because you never know who you are talking too" and you don't believe it trust me it is true!

When Audra was very young and I had more energy, time and commitment I was on the board of United Cerebral Palsy Association. Along with doing telethons, Audra was the "poster child" for the UCPA Hug-a-Bunch campaign and got to be on a commercial with the "Giants" and other famous people, some cool perks for a little kid.

I on the other hand was the "token" parent, my job was to tell "my story" and to participate in events as the mother of a child with a disability. (mmmmm time hasn't changed much..lol)

On this day I had been invited to attend the annual tea at the home of one of the auxiliary members. Most of whom were women who volunteered thier time to raise funds for UCPA.

They were kind and gracious, but really had no idea about children with disabilities. I sat next to a women, who told me the following story.

"Our group made these darling stuffed animals and took them up to the ECE Center. I took one of the animals and went over to one of the little "mat" cases and bent down and gave it to her" "She looked at me and I think she knew what I had done".

I could hardly keep myself from cracking up, Audra no doubt had been that little "mat" case. She had brought home a stuffed giraffe the week before from school and I was told a group of women had been there to give them out. It was her teacher, Beth's custom to get the kids out of thier wheelchairs to lay them down on mats for tummy time.

This women had no idea she was talking to the mother of "that mat case" surely she would have died if she did. I stifled my inital shock and then amusement about the "little mat case" until the drive home.

The experience added to my drive to teach "others" about the capabilities and "normalcy" of people with disabilities, as well as the correct terminology to use. Unless those who love and work with persons with disabilities educate the outside world our loved ones will always be apart from "normal" society. We need to foster acceptance of all people, regardless of thier unique and individual challenges and not label people.

When Audra was about 8 years old she got her "augmenative" communication device. Something like a large computer screen attached by a pole to her wheelchair with a screen covered with picture symbols and little red lights. She was working the device using a head switch and manually scanning the picture symbols.

I was so excited that she could "talk" that I took her new "voice" to church with us on Sunday.

That day at church there was a substitute minister. After the service as the congregation gathered in the fireside room he came up to us and introduced himself. Audra hit her switch and the voice in the box came to life "Hello, (it said) my name is Audra" and she smiled and tilted her head up for yes. "Why how nice to meet you Audra" the minister said.

It was such a proud moment for me, my daughter could speak! Audra hit the switch again and the voice bellowed "Now Go Away" as Audra looked straight at the minister and giggled and tilted her head up for yes.

"Audra" I said, you are never allowed to talk at church again!"

Even though I was just a factory worker I knew instinctively that young children learn by exploring their world. If Audra couldn't explore it on her own then I decided that I would help.

How can you know what cold water is if you never have it run over your feet from a hose on a hot summer day? Or feel sand run through your fingers and squish between your toes at the playground sandbox?

One of my childhood joys had been climbing the old Walnut tree that stands in my parents backyard. A joy I was afraid that Audra would never know. One idle afternoon at grandmas I got the crazy idea to show Audra what it was like to climb a tree.

As my mother held her in her arms I swung up on the ancient old tree and climbed the trunk to a stable spot. Grandma held Audra high above her head, until I got a good grip on her and could pull her up into the tree with me.

We climbed a little higher and there we sat for sometime. Looking down at the earth, at grandma and the world. We sat half hidden shadowed by the green leaves of that old Walnut Tree and I said, "Audra, this is what it feels like to be in a tree" and it did...

The first year of life with Audra was scary, confusing and filled with screams, hers, not mine.

For some reason and I don't know why, Audra sceamed almost non-stop all day, every day and long into the night.....

Once, years later my husband asked me if I remembered how much Audra screamed? I looked at him blankly, "Well I remember she screamed an awful lot" I said, "but no I can't really remember it. "

I guess I was just to darn tired to remember it or perhaps my mind has blocked out those scream filled years.... At any rate Audra would scream if you laid her down, scream if you carried her around, rocked her, walked her,sang to her, talked to her. She would scream in the car seat, scream at the doctors, while visiting relatives or friends or for any other reason that she saw fit.

I am sure there were times when she didn't scream. When she slept peacefully in my arms, smiled and giggled at our antics to entertain her or was happily full of rice cereal.

I have met other mother's of children who have cerebral palsy who have expereinced the same thing the first year of life or so.

A child who would or could not stop screaming. We have bantered around our therories.

Could it be that thier little brains are neurologicaly mixed up and need time to heal and settle down?

Are they having trouble eating and are they hungry?

Are they physically in pain or uncomfortable?

Are we just bad parents who can't soothe our babies?

Is it really colic, like the doctors said?

If we could come up with the answer we would be able to help other parents who are going through the same screaming infant/child nightmare right now.

The best that I can say, is that eventually the children I know and Audra, as well, grew out of this screaming nightmare to be (almost) pleasant children.

For those parents going through this right now the good news is;

It will end eventually!

You will survive!

20 years from now you won't really remember it!

You are not a bad parent because your infant cries!

Some ways I found to deal with it were;

Putting Audra safely in her crib and taking a time out by vacuming the house (this way I couldn't hear her crys) I never did this for long, because she would get really worked up and sweaty and stuffed up.

Putting her safely in her crib and taking a quick shower (this way I couldn't hear her cry)

Taking her for a walk outside, which sometimes would soothe her.

Calling in the reinforcements, Grandma and Grandpa to carry her around for a while.

Trying to distract her with toys and activities, especially at the doctors office or some other appointment.

Talking and singing to her and being silly.

Ear plugs were helpful, and an ipod would be as well.

I wish you good luck!

Audra was lucky to have grown up on a block filled with children. Most of all she was lucky that they spent so much time at our house. Her built in playmates included, Becky, Tracy, Shannon and her brother Jake.

They made no allowances for her disability, taking her wherever they went and tolerating no more then you would from any other kid. From regular Brownies, where activities included hiking on trails that often left Audra and her wheelchair precariously perched on the side of a mountain.

To our own home, where 4 year old Jake and Shannon would be playing with Audra in a bedroom and upon becoming bored and wanting to move play spaces come up with a plan to take Audra with them. Since she wasn't in her wheelchair, but laying on the floor, and they were too little to pick her up they devised an ingenious way to move her.

Rolling her onto a small blanket, each would take an end pulling her along as they navigated the hallway and dining room to thier formal destination, the livingroom. Audra laughing all the way at this great adventure and getting rug burn all over her elbow where it hit the carpet. They never left Audra behind.

If Audra laughed when they fell or got hurt, Becky would yell at her "It's not funny Audra", just like another kid would.

To them Audra was just Audra, they never thought much about it.

The mom's on the block also treated Audra like one of the "Anna Street Gang" Becky and Tracy's mom going out of her way to adapt sprinklers and birthday parties to fit Audra's needs.

Shannon's mom finding a "Pageant" for Audra to take part in for girls who were physically challenged and then going all the way to Sacramento to support her.

Hanging out on the front lawn, playing dress up and Barbies, they were always together.

And now years later, they are still there, Audra's friends.

They remember her at their weddings and on her birthday. They helped me through those difficult months after she died and most of all they carry her in their hearts and they remember.

We are all so blessed to have had them and to still have them be a part of our lives and a witness to Audra's life.

Her very best friends the "Anna Street Gang".