Everyone knows the saying "the more things change the more they stay the same"
Conversing recently with my good friend of almost 30 years we discussed the challenges that we have faced as mothers of children with disabilties.   The good, the bad and the ugly of it all!  
The trials and tribulations that we had hoped would be spared another generation of mothers and our frustration at the knowledge that it hasn't been.

So many souls have crossed across over our threseholds and into our lives looking for answers, looking for hope.  All we can do as mothers who have been on this journey longer is to bandage thier wounds and offer them a tender ear to listen to thier woes and a box of kleenex to dry thier tears.
Nothing has changed. 

It is still hard to hear someone talk about a child you love and all the milestones they have missed.  It still cuts deep to see "other" children run and play without a care in the world and listen to thier mothers #### about the dance class teacher they don't like, when you know your own child will never dance.   

Life is so unfair.  How I wish it wasn't so.
We don't always get to choose the path or the road we are on, sometimes it is choosen for us. 
We must make the best of it.

I wish that I could make all the hurt I see in my friends eyes, in those mothers eyes, in my own eyes, go away.
But I am not God. and so all I can do is pray.................................................................

My daughter Audra was born screaming, not literally but by the time she was a few months old it had certainly become the norm.  When she was a baby Audra screamed both day and night.  My husband once asked me if I remembered how much Audra screamed.  I told him I didn't exactly, but remembered it seemed constant.  (knowing many of my friends who also have children with cp we have found this to be a common thing)  While one theory I have heard from therapist is that it is the effects of the neurological damage and the healing process that a baby is going through, my child still screamed when she was 11.   So that kind of blows that theory away!

I took her to the doctor, colic he said.  We switched formula, she still screamed, I took her back to the doctor, colic he said.  Nothing I did could calm her and her screaming was non-stop at times.  I felt like the worse mom in the world, becuase I couldn't figure out why my own baby was like this.

I took her back to the doctor, cp he said.  She still screamed, the only thing remotely soothing to her was holding her in my arms.  Car trips were particually nerve racking (as some of you with children like Audra know)   She screamed the entire time she was in her car seat for what seemed like years.  She screamed when we would pull into the parking lot at the doctors (okay I can't blame her for that). 
She screamed in the middle of the night, if I didn't understand what she wanted, if her playmates had to go home, if she didn't want to go to school, if she was mad or any other reason she would think of. 

You wouldn't know it from the adorable photo of her posted here on my blog, but she screamed!
When she wasn't screaming she was quiet happy.  Every morning I would wake to her screaming,
I asked her once, when she was older and could fully understand me "why can't you just wake up and make your sounds?  I will hear you!  You don't have to scream"  it didn't work, she still screamed.

We worked with a behaivor therapist, she still screamed!

This story really has no purpose, other then to let other parents who are living with a screamer know that they are not alone.  Buy some ear plugs, turn the vacume on crank up the music, just know that you are not the only one who has gone through this, you are not a bad parent.  Sometimes there are no answers or solutions to why our children do what they do.  At least it is a mystery to me! 

Well I certainly have been a stanger to my blog lately.  Call it a mid-life crises, a menopause moment, laziness, distraction, depression or a malady of complicated things.  I just haven't felt much like writting these past 12 months. 

But once again I heard the the rooster crowing and knew that it was time to write.  I couldn't let my small but loyal fan base down by not blogging something about my life. 

For those who know me well you know that this next month is one of distraction, avoidance, joy, change, hope and sorrow.

Audra and Jesse were born in August and Audra died then.  
My Jesse, will be 18 and leaving her hot pink and zebra striped room filled with a whirlwind of clothes, shoes, search and rescue gear and boyfriend gifts behind to go to college where she will double major and work on her goal of obtaining a law degree.  She will be in the honors program and I couldn't be more proud of her!

Audra would have been 29 years old this month.  And the anniversary of her death on the 10th will mark 17 years since she earned her wings.   I spend that day in rememberance, honoring her wish of visiting her friend Seans grave at Holy Cross and buying her tokens of rememberance or necklaces to drape on her urn.

Some people think that when you lose someone you get over it!   You grieve, you move on, your life goes back to normal. 

But those of us who have lost someone significant know that it is not something you ever get over.........
It is something you learn to live with though and it gets easier with time, and help and therapy.  
Audra took a piece of me with her when she left and in me she left a piece of herself behind. 

Life Goes On............children grow up (if were lucky) and move on with thier lives.  
Which leaves us behind, wondering just what we should do with our lives.

For those of you with young children, I assure you that someday you will get to the point where you can pee without having to leave the bathroom door open, you will forget the names of all the Sponge Bob Characters and your life will no longer revolve around pick up's, drop off's, school meetings and car pools. 

You will learn to cook for two, get to know your spouse again and have plenty of time to enjoy this quiet time in your life, that is when you aren't working your tail off to pay for college.  
You may find yourself at a lull, between grown children and anticipating future grandchildren and dreading being called Grandma, when Nana will do.

You may be like me in that sandwich generation with aging children and parents and playing supporting roles to both. Or like many of my friends you may find yourself still caring for a now adult child with disabilities, when your life plan hadn't included it and your biggest fear is what will happen to your child when you can no longer care for them and you haven't had a real nights sleep in the past 20 years.

One thing is for sure, I am a survivor, as are most of my friends who have stood toe to toe with me on this battleground of parenthood. 

My new favorite saying is this quote from Hemingway.

"The world breaks everyone, and afterward, some are strong at the broken places".....


I have been broken for sure but I am strong at the places in between!





 

I know it may feel like every awareness month is just a ploy to get people to wear ribbons or participate in a walk.  But there is a greater purpose and reason; a face and a story behind why these campaigns are created.  As we celebrate "Cerebral Palsy Awareness Month" during March, I encourage you to think about parents like me.

My beautiful daughter was born in August of 1982.  And yes, she was born with cerebral palsy.  Audra had a spirit and smile that melted the heart of anyone she met.  Unfortunately, not everyone knew what her disability was, and as a parent, it was sometimes difficult to always explain.  Even I was a little ignorant as a new mom, let alone a mom of a child with special needs.  It takes awareness months and campaigns to not only raise funds and disable stereo types, but also to help families know they have a community.  There are other parents facing the same fears and joys that they encounter every day.

Cerebral palsy affects over 800,000 people in the U.S. alone.  Federal funding for treatment and research is grossly under-funded, relative to other diagnosis.  Currently, a cure does not exist for cerebral palsy, which can range form mild to severe symptoms.

Cerebral palsy, or "CP," is a broad group of disorders which disrupt a person's ability to move, sit, stand, walk, talk or use their hands.  It is caused by damage to the brain, either before, during or after birth or within the first two years of life.  It is one of the most common congenital disorders of childhood.  In more than 80 percent of cerebral palsy cases, the cause is still unknown.  Despite 50 years of advances in genetics, obstetrics and neonatology, we still do not understand all we should about this disability.

As a parent and a Family Resource Center coordinator, I know first-hand that supporting a "Cerebral Palsy Awareness Month" does so much for our families.  With tools like Facebook and blogs, can you imagine what we can do as a community to support our kids?  If you tell two people about cerebral palsy this month and they tell two people and they tell two people - we could reach over 100,000 people before the end of the month.

So join me by doing one (or all) of the following:
- Wear the color green in honor of all the people whose lives are affected by CP (and not just on St. Patricks Day).
- Learn more about CP. AbilityPath.org offers great resources or visit the http://www.cdc.gov/Features/CerebralPalsy/
- Support efforts towards research or support for families.  This may include donating your time, expertise or money.  there are great national and regional nonprofits leading these efforts.
- Reach out to a family affected by CP.  They need their community and your friendship.
-Share this blog on you Facebook page, tweet or talk about it with your friends.

I only wish there was more awareness about cerebral palsy.  Maybe it would have made a greater difference in my daughter's life.  I may no longer be able to look across the dinner table and see her smile or feel her hug, but her spirit will always be with me.  It is there in every family I work with and every child with CP that I see.  I see her smile in them, and I know there is more we can do.

For more information on cerebral palsy, causes and treatments visit;
The following websites:
http://www.abilitypath.org/areas-ofdevelopment/delays--special-needs/cerebral-palsy/
http://www.cdc.gov/Features/CerebralPalsy/
https://health.goggle.com/health/ref/Cerebral+palsy
http://www.reachingforthestars.org?p+364

My Grandmother had the "Serenity Prayer" on her wall.  It was one of the few things I took when she died.  I was never able to fully understand the meaning of it until this past year.

"Grant me the serenity to accept the things I cannot change: courage to change the things I can and wisdom to know the difference."

This year has been one of change for me.  I have learned to accept the things I have control over and to let go stressing about the things I have no control over.  A wondrous feat to have accomplished at 50.

My wish for you is that you can find the wisdom in this long before I did.  We may not have control over our children's problems, but we have control over how we react to them.  We have control over how much time we spend teaching and playing with our children.  We have control over taking our children to services and programs that will be beneficial to them. 

We may not have control over other peoples reactions or comments, but we have control over or own reactions.
It is not a bad thing to give up on the things you have no control over, as a matter of fact it is quiet freeing.

In a moment of down time I challenge you to find paper and pen and write down the things that you have control over.  Keep this piece of paper with you and every now and then take it out and read it again.

You may just find some wisdom in your words and some comfort in knowing that you are doing all that is within your power to control what you can and accept the things over which you have no power to change.

It was a rainy day at the ECE Center on Tower Road. There was a break just about recess time that allowed the children from Beth's class to go outside on the playground and get some air.

The little 4 and 5 year olds that could walk, ambled about the playground, while the kids in wheelchairs sat and watched.

Eric looked down at the ground and there lay a fat, wiggly earth worm. As boys are won't to do Eric couldn't resist picking up the worm and dangling it from his fingers. The children gathered round.

Audra too sat and looked at the worm, mouth open, drooling.

Suddenly Eric got an idea on what to do with the worm, he would feed it to Audra. As his hand approched her mouth, Audra clenched her teeth shut and shook her head from side to side. No way was she eating a worm. The aid finally stepped in and called the children in from recess. The story was recounted to me later that day.

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.