Autism Awareness Month

It seems as if everywhere you look this month you see another magazine, another facebook page, another organization telling the world that April is Autism Awareness month. From the paint jobs on Nascar race cars, to the shoulders of ball players, to the fb pages of my friends Autism is the cause.

When I first became aware of autism the statistics being touted were that one in ten thousand children would be affected by autism.The research was minimal, and much of it still blamed the condition on bad mothering. When I first became aware of autism, most educators had never heard of it. Most teachers had never met a student with autism, because students with autism weren't in school. When I first became aware of autism, parents were still being told that their children would never speak, would never interact in any meaningful way with other people and would be better off institutionalized.When I first became aware of autism, my son was 18 months old.

I started questioning some of his behaviors with his pediatrician. Those questions would eventually lead us through children's hospitals, university hospitals, as well as clinical classrooms attempted to get a diagnosis. Now, a correct diagnosis when it comes to special needs children is so important. It is the only way to get your child the proper services from the school district. Like other families back then, we went through some wrong diagnosis before we got where we needed to be.

Our pediatrician sent us to a clinic at the local hospital. the very hospital where my came into this world. This hospital diagnosed my son as severely mentally retarded. Now, I may have just been the mom, but I knew this wasn't even close to the truth. So, off I went to the Children's hospital where my son was diagnosed as having a communication disorder, and for 3 pages of the 6 page diagnosis, a bad mom. Interestingly one of the criticisms of the 'experts' at this hospital was that we did not have a TV. It was written that I talked to my child too much. Honest, that's what they wrote. They also wrote that I was unrealistic in my expectations. I expected my son to be able to overcome whatever challenge was thrown at us, and to succeed. How dare I believe in my son!

This diagnosis of a 'communication disorder' was at least good enough to get us a placement in an early intervention program. My son, started school at 3 years old. He has always loved school and learning. We have always been blessed with good teachers who cared about  their students. The preschool program he was placed in had 10 students per classroom. I spent as much time in the classroom as he did. Parents were encouraged to be there and work with the teachers. As I looked around most days, I was the only parent there. I was stunned to learn, in overhearing a conversation between two teachers that in my sons classroom all of the other children were there because of problems created by the mothers drug use during pregnancy. What a sad statistic, having to do as much as where we were living at the time as anything else.

Eventually, I could feel Spirit telling me it was time to move. Raising a special needs child as a single mom was going to be easier in the Midwest.So, we moved. The first house we lived in was in a school district that chose to not deal with my sons challenges. By this time i was certain that my son was autistic, and I let school district administrators know this. A parent attempting to educate and autistic child was a new thing, and it took me a while to find the right school district. Eventually we did, and we moved again. My son registered in kindergarten, I took him to the local hospitals, and finally we had a diagnosis of autism.It took four years of doctors and educators to diagnose my son. Autism at that time was a relatively unknown disorder.

My son was blessed. We ended up living in an excellent school district that provided excellent programs and teachers for him. We are aware that other parents are still fighting long and hard for their children. Our journey through school was challenging, but in our school district he was able to thrive. My son was the first autistic student in the district. He would soon be followed by more autistic students as statistics changed. When i was taking my son from hospital to hospital-six in all-the statistics were one in ten thousand. Fast forward 20 years, it is April. Autism Awareness Month. Hard to believe that we have come this far in such a short time. Hard to believe that the statistics now say one in one hundred and ten children will be affected by an autism disorder.


When I first became aware of autism it was considered a rare disorder, now it is so common that it has a Month to raise people's awareness.Look around you, I bet you know a family that is being challenged by autism. In your schools, in your churches, in your neighborhoods. This month, be aware, when you see the blue lights lighting up a neighbors house, ask, they will be glad to talk to you about autism. When you are surfing the internet and you see the blue puzzle pieces in a logo, stop and take a minute to read the article.

Autism has always been around, all we ask is that you take a few minutes to become aware. Afterall, isn't that what awareness months are all about?

Walking in Faith

Mr. Bill and I were engaged for 4 years. It took us one month to meet, fall in love, and promise to spend the rest of our lives together and 4 years for us to work through the issues that needed to be worked through before we made it to the altar. Well, if a table in a coffee shop in a county courthouse can be called an altar.

Now, it would be lovely if I could say that all of the issues were his, and that I was issue free. It would be lovely, but it would be untrue, and the truth is important to me!! Mr. Bill had what we referred to as the practice wives. 3 of them. I was the 4th Mrs. Bill! Mr. Bill was the first and ONLY Mr. Esther! We were in our late 40's when we met, so we had a  lot of miles between us, relationship wise, and those miles came with lots of baggage.Baggage that had to be opened and looked at and sorted through, with the detritus left behind us.

One of the things that is most surprising to me now, is the issue of independence. I was a very independent woman when we met. I had to learn to allow someone else take care of things. I had to learn that I could depend on someone. One of my major issues is that I do not ask for help. I have never been able to ask for help. I learned in my childhood that asking for help was unwise, and that there was no one I could depend on to help me. So, I grew up knowing that people were not to be depended on, not to be trusted. By the time I met my husband I was pretty much set in my ways.

So, Mr. Bill crossed the street, and we spent the next 11 plus years learning from and with each other. I learned to trust and depend on another human being. I learned that it was OK to allow someone to know me better than I knew myself. I learned to love and to be loved.

But, I am still learning to ask for help. I always think, right up to the last minute that I will come up with a solution. So, I put off asking for help until it's too late. I just know that God has a plan, and that I will hear from my Creator, telling me how to fix it. It has always worked that way.

I have always been blessed in my life. Even when times were tough, God has always provided for us. When my son was small, it seemed that we had miracle after miracle. I love to tell the stories of God's provision.

One of my favorite stories is the one we call "The toilet tissue story" We were down to our very last roll of toilet tissue. Now that seems like a really small worry in the grand scheme of things, but to a single mom raising a special needs child, sometimes its the small things that matter. We put the last roll of toilet tissue on the holder, and I knew that I did not have the money to buy a package of toilet tissue. I would  not have the money until the first of the month, and it was the 20th. 11 days from payday. So, as I placed that last roll of toilet tissue on the holder I just gave the problem to God. Every day for 11 days, I looked at that roll of toilet tissue, and every day for 11 days, that roll of toilet tissue appeared to remain the same size. Now I know that was not possible. I knew it wasn't possible while it was happening, but it never grew smaller. Until payday, when it seemed to go from full roll to empty roll in a matter of moments. I have shared our toilet tissue miracle many,many times over the years, and people look at me funny every time I share it. All, I know is that to this single mom, that roll of toilet tissue represented God's provision in an amazing way.

Another of my favorite stories from that time in our lives is the story of the Christmas Cards. As Christmas got closer and closer, I did not have the money to purchase gifts for my son. So, once again, I gave it up to God. The other moms at the bus stop would ask and I would tell them I was waiting for God to provide.Sometimes it is hard for people to understand that. When you choose to walk in faith, it often looks unrealistic to those around you. As the days of December counted down, I knew that they thought I was crazy. But, I just kept telling them that I was not worried, God would provide for my son to get what he had asked for.

 On December 23,  I walked to the bus stop to meet my son. It was December 23rd, and I still did not know how, but I knew that God would provide.On my way to the bus stop, I picked up my mail. There were 6 envelopes in the mail box that day. I carried them with to the bus stop at the end of the street, and as the other moms and I waited for the bus to come, I opened my mail. I opened a card without a return address, and in the card was $70 dollars in cash. The card was signed, A Friend. That was all. The other moms and I were so excited, as I showed them the card, and reminded them that I knew God would provide. Then I opened the next card, in the card was $70 dollars in cash. That card was signed simply With Love. I shook as I opened the last card. In the card $70 dollars in cash, signed Santa. Of course, I was crying tears of joy, and tears of amazement, as I was able to share with the other moms God's amazing provision.

So, here we are again, waiting for God to provide. I have had to overcome my issue of not being able to ask for help, a lesson that Creator has been trying to teach me for years. Mr. Bill tried to help me learn it, but he was killed before I got it. So, I am still working it out.

They turned off our gas yesterday, so we do not have hot water or heat right now. But the choice was between the gas bill and medication for my son, and to me the choice was obvious. I am a single mom again, a widow with a special needs child. My child is no longer small, but he is still my child, and we are still waiting on God's provision. Faith is a choice, not always an easy choice, but a choice nonetheless.  So, all that's left is for me to watch and see how long the roll of toilet tissue lasts this time, because I know that in God's time our needs will be met.

I'll let you know how it turns out!

TGIF!

My son suggests that my 'Post Menopausal Memory Loss' is also my exercise program. He may be right,  just a couple of mornings ago I looked for my coffee cup in every room in the house, including the basement...it was sitting next to the coffee pot!

Just today, I went to the basement to start a load of laundry.I turned on the washer, added the soap, and shut the lid. The basket with laundry in it was still in my bedroom. I make many more trips up and down the basement steps, or from room to room than I used to. I get up from my desk, walk into the kitchen with determination, only to end up going back to my desk determined to remember what it was I wanted.

So this morning I am thankful for memory loss. In all things give thanks! All things work for good. Since my mobility is becoming more and more limited, I am thankful for the extra steps I am able to take while looking for...what was it I am looking for?

I talk to myself more these days. I think it also has to do with my memory loss. If as I am walking from my desk to the kitchen I say out loud "I am going to get a cup of coffee" then when I get tot he kitchen and can't remember what I came in here for, if William is in the room I can ask him, since he would have heard me talking to myself. Am I losing you, because it makes perfect sense to me!!

So this morning I am thankful that I am in the habit of talking to myself out loud.

Well, except I woke up yesterday morning with laryngitis. It is something that happens to me every year for a few days, like the first robin, my allergies are a harbinger of spring. But, I am going to say Thank you, Most High, for truly this means that Spring is here. Today, I give thanks for being unable to speak above a whisper.

Sometimes when we are surrounded by problems, we forget to be thankful. I know I do. I get all stressed out, wrapped up in worry. Problems don't get solved by worrying. I know that, you know that, and yet most of us worry when we are faced with problems. I have been blessed with adversity all of my life. Literally since before I was born, and still this is one of  the spiritual truths my Creator has to teach me over and over again. Fortunately my Higher Power has an amazing amount of patience.

And for that, I am truly thankful!!



 

Where were you at 22?

My husband was killed by a drunk driver.

Quick, what picture did your mind flash when you read the words 'drunk driver'?

In our case the words 'drunk driver' mean a 22 year old girl. A lovely young woman with her entire life before her. Recently graduated from college, with honors. From all reports, she was a goal oriented, studious college student.She is very close to her family, she goes to church on Sunday. After her May graduation she went to work, as an accountant and moved into her own apartment.

After she got off work Friday night, she reportedly went out with some friends. Young people, enjoying themselves on a Friday night. Laughing, talking, drinking. Then she got into her car to drive home. Her blood alcohol level was around .118, well over the legal limit. In her intoxicated state she drove up a freeway off ramp, past the signs that said WRONG WAY and drove northbound in the southbound lanes for a couple of miles at freeway speeds until she hit my husband's car head on, killing him instantly I am told.

This is on my mind because my friends and I have children in this age group. Children that are stretching their wings. I remember reading somewhere about how a butterfly struggles to exit the cocoon. If we were to help the butterfly, the butterfly would not be able to fly and would die. It seems that the struggle to break free creates the strength necessary to fly. Those of us with growing children know the truth in this. We watch as our children struggle with the silken constraints, and we want so much to help them, but the most we can do is hope that we have taught them right from wrong, and that life is always about choice, and every choice has consequences. We watch our children stretch their wings, and hope they know that there is nothing they can do that will make us stop loving them. We hope they know that when we see them struggle, we will do our best to make sure they learn how to fly.

My husband and I were always very open with our son about our youthful struggles with drugs and alcohol. We felt that since genetics may play a role in addiction, we had a responsibility to tell him our stories. He knows about our 12 step programs, and why we attend. He knows that we celebrate 2 birthdays a year. In fact, he has been quite proud of our milestones over the years. He will tell you that we choose not to use alcohol at our house. He will tell you that we choose not to use illegal drugs at our house. He will tell you these things with pride in his voice, because he knows that in life there is always a choice, and every choice has consequences.

Being a parent is a hard job. We watch our children stretch their wings with such pride and fear. What if we see them struggling, when do we help, how do we help. Have we talked to them about the embarrassing stuff? Kids will groan when the subject turns to sex, drugs, alcohol. They will roll their eyes, but we must tell them anyway.

Do your children know your stories? Do they know that you were their age once, and that you made choices and lived with the consequences of those choices. Sometimes the consequences are benign. You are 22 years old and you choose to celebrate the end of the work week by going out with friends and laughing and talking and having a good time. Since you are choosing to have a drink, you have chosen whose turn it is to be the designated driver.

Sometimes the consequences are tragic, and you have too much too drink and you choose to drive drunk, and you drive up the off ramp past the WRONG WAY signs and you kill a man, and nothing is ever the same again.

Blessed

I think the first time I realized what a challenge my son was going to be was the day(2 years old) we took him down off the roof...then there was the day he went shopping(4 years old), moving a 250 pound sofa sleeper, unlocking 3 locks to get out the front door. Running down the street, entering the grocery store , grabbing a cart, and methodically heading up and down the aisles choosing items. The shopkeepers recognized him, we were regular shoppers in our neighborhood grocery store.The manager said they  assumed I would soon follow, so they let him shop.That was the day I put bells on the door.

Or was it the day when he was 5 years old and he slipped out--he had an uncanny knack for taking advantage of my bladder--of my auntie's front door, ran down to the intersection of a one lane street and a 4 lane thoroughfare. STOPPED traffic with his hand upraised, crossed the thoroughfare, and calmly entered the convenience store,where kind people called the police,and bought him an ice cream while waiting for the police and mom to show up! The police and I got there about the same time.

Perhaps it was the day in third grade when they called to inform me that my son had hacked into the school computer system and locked everyone else out! They wanted me to help convince him to tell the IT guys what he had done. When I asked him to tell the IT guy what he did he responded "He is the computer guy he should be able to tell." I said "Well, he can't, you have to tell him." Then I heard a sigh and a few keystrokes and my son said,"There I changed it back." We discovered that he had stolen his teachers password, not by watching, but by hearing her type it in. He could tell the sound each key  made. So, William had to go into the hall with the classroom door closed whenever his teacher wanted to log in.

He has kept me on my toes through the years, and it is evident to all who meet him that he is a unique individual. The most amazing person I have ever met.This week we met a new challenge, illness. He has been a very healthy young man. All of his life. So, when he let me know last Sunday that he was in pain, I knew it was serious.The pain was in his lower right abdomen, so of course, the immediate thought is appendix. When we finally got to see a doctor in the Emergency Room, that was her first thought too. So, off we went for a CAT scan.Fortunately I am not squeamish, so I was able to be with him through all of his procedures.

I felt like a really bad Mom, because as we answered questions, it turns out the pain had started several days prior to my finding out. I had been questioning him, since it was evident he wasn't feeling well. But, I didn't ask just the right question until Sunday. So, we wait, all day Monday, in the ER. The CAT scan comes back, and the first diagnosis is possible ruptured appendix. That scared the hell out of me, but I couldn't let him know. He was already stressing out, and shutting down. Autism at it best. In order to deal with pain,  he could just retreat into his world, where it doesn't exist. But, in order to help the doctors and nurses find out what is causing the pain he has to be able to communicate with them. Now, we need the translating skills of Mom.

As we are admitted to the hospital, he is using all of his coping skills, and doing an amazing job. Then, during the day it happens. The nurse is not having much luck finding a vein for the blood draw. She is hurting him. He does not cry out, does not yell-all things I do when I am getting my blood drawn. He closes his eyes, grits his teeth, and reaches out and grabs my hand.

The surgeons come, they poke and prod and then leave to read the CAT scan. Miraculously they find a healthy appendix. But right next to it is a large abscess. It must be removed, but how? Fortunately a wise surgeon decides that surgery is out of the question. We do not know yet what type of infection is contained in the abscess, so we go off to the ultrasound department. The doctor is going to attempt to draw out some fluid from the abscess to culture. He looks at the image on the screen, even I can understand what the image shows. He changes needles, and he decides that he can totally drain the abscess. Everything is explained to us, I explain to my son,  the doctor uses a local anesthetic,and once again my son reaches out for my hand and I watch through tears as the abscess disappears, its contents in several large syringes.

 I can not remember the last time my son allowed  me to hold his hand, and here he is holding on to mine. At this moment in time, all of my grief, all of my fears, all of my stress do not exist. There is only my son holding my hand, and me thanking my Creator for choosing me to raise this child.

At my  infant sons christening I asked Most High to help me make sure that my son would experience the magic of childhood. The answer was the gift of autism. The most amazing blend of special needs, genius, and faith that is my son. My son believes that God will always provide, and that whenever we meet a challenge, Mom can find the answer. My son trusts me to help him learn to navigate a world he has trouble understanding. It seems miraculous to me that he is holding my hand. I will never forget the feeling of his hand in mine. I am humbled by his trust and faith in me, humbled by God trusting me to raise this special child. I am overwhelmed by emotion. I am truly Blessed.

STRESS! and other issues...

It is amazing how fickle our human  minds are. Throw a bad week at us and we forget how blessed we are and concentrate on how stressed we are. I admit that I have had a bad week. My precious son was hospitalized. The softball sized abscess in his abdomen was a form of peritonitis, and we have not found the cause yet, so even though we are home, we have return trips scheduled.

Of course, he is not insured. He aged off my insurance last year. So, we had to go to the ER that would take him with no insurance. The poor people hospital. The ER was scary, after a wait of several hours to see a doctor, we were first told he might have a ruptured appendix. We were in the ER for 12 long hours before they decided to admit him rather than operate on him. Then 3 days of tests, finally a procedure to drain the abscess.

As you might imagine, none of this was easy for my son. He does not communicate well with strangers. He does not tolerate touch well, and he does not do well with scratchy fabric like that of a hospital gown. All of his senses were over stimulated. 

We get discharged from the hospital, and I spend way too much money at the pharmacy, filling the 7 prescriptions we were given.I am worried that I will be a month behind on the mortgage come the first of the month, and now I don't have enough to pay my insurance premium.

Let's add guilt to the mixture. Guilt that I did not ask the right questions, and so my son was in pain for several days as the infection in his abdomen grew. Guilt that I can't work anymore. Guilt that I have been mired in grief for my husband. Guilt. Reinforced several times, in different ways.

Pain. Yes, stress raises my pain level. But, I can't take the medication for breakthrough pain. It makes me drowsy, and I have to be available for my son. So, I am trying to breathe through the pain when the next shoe drops...My dear friend dies. Someone I am close too. I just talked to her last week. New guilt, I didn't have a chance to call her this week.

OK, I am starting to feel foolish. I am the same person who writes about faith, and choices, and HOPE. I am the same person that has heard God since she was 4 years old. Trusted God to provide all of her life. How can I be this stressed out? How can I be this afraid?

The human brain. Experts only understand a small percentage of what it is capable of. Right now, I can tell you it is capable of focusing on the problems so single mindedly that I can't hear the song in my spirit. I can hear the song in my head...
Make the world go away,
Get it off of my shoulders!!

But the song in my spirit, that one is quieter, and I will have to choose to hear it.Choose to breathe through the fear about my sons health, the worry about our financial situation, the grief of losing a good friend, and the guilt I feel in all of these situations.

I don't have the answer this morning, but I do have the choice to not let myself be overwhelmed by it all.I can choose to breathe, I can choose to beleive that God is in control. I may question why all of this is happening, but i know that as often as I would cry " why me?" the answer would still be the same, "Why not me?" Would I wish any of these things on anyone? NO.

Today I choose to continue to believe. I choose to have faith. 

Deep breath. I can do this. In honor of my dear friend, whose favorite advice was "Never let anyone steal your peace." I CHOOSE to reclaim my peace.

What a week!

The Nurse Mommy: Win a Fantastic Blog Makeover from Visual Serendipity!

The Nurse Mommy: Win a Fantastic Blog Makeover from Visual Serendipity!