Burden Into Blessing

This Friday and Saturday marks three months since Lynda was removed from life support and entered into paradise with Jesus.

Three months of the rawest emotions I've ever experienced.

I've known since day one that God could and would turn the burden of losing Lynda into a blessing.  I don't know how but I have faith that He will.

Even with the burden of the loss of a loved one, this experience of loss is still mixed with blessings upon blessings.

God is good.  He is amazingly good.

My Little Doll on Halloween

 This was Lynda's first Halloween with us in 1975.  She was four years old and I don't have to tell you much more because the grin on her face tells the rest.

I think this was the only Halloween costumes that I ever bought.  This picture was her Daddy's favorite of all the pictures we have of her.  She was sitting in a little cradle that my Uncle Forrest had made.  She was still just a tiny thing.  This picture just makes me want to squeeze her.

The picture below of Lynda as Raggedy Ann was made in 1976 when she was five years old.  This is one of my favorite pictures of Lynda, actually.  The pose looks like she just sat down and said "Shoot when you're ready".  LOL  Obviously this shot was made after the other five rolls of film had worn her out.  Her hands are even folded in her lap.  I made this costume and she did look just like a little doll.  The big Raggedy Ann doll that she is sitting on in the first picture and the big one behind her in this picture is the doll we bought the night before she came to be our foster child.  It was always used to sit on but never to play with.  When Kevin and Kristopher came along, I made them a Raggedy Andy costume and posed them at about the same age.  I had to do theirs a year or two younger because by age five they were choosing their costumes and Raggedy Andy wouldn't have been the choice.

These pictures bring back such sweet memories of a time that was so much safer for our children.  I remember making candy apples and caramel apples for the children who trick-or-treated on our street.  As far as the food was concerned, the only thing parents worried about was kids getting a stomach ache from eating too much candy, not poisons or razor blades like today.

I don't even like Halloween anymore.  When my kids were little it was just a fun time to dress up in cute costumes. 

Autism: Oh, The Possibilities

Autism:  Oh, the possibilities has so many meanings.  For Lynda, I always tried not to look at the possibilities of what she could have learned had her life not been interrupted at the age of ten.  There were so many possibilities but we will never know.

Today there are even more possibilities with applied behavior analysis and early intervention.  There are more possibilities for children to become communicators by speaking, using augmentative communication devices, sign language, PECS....the possibilities are endless.

When Lynda was four in 1975 and PL-94-142 was just being signed into law, parents for the first time saw possibilities for their children with autism.  The prognosis at that time in history was not that promising and the possibilities were elusive.  Most parents never gave up.  They never took their eyes off of the possibilities.  In 2013, we see more and more possibilities for children with autism.  With early intervention, we see the possibility of a child actually losing his diagnosis of autism because he no longer demonstrates many of the diagnostic criteria.  Through persistent therapy and many hours of hard work on the part of therapists, teachers and parents this is a real possibility. We see more and more children participating in inclusion classes and them being successful.

Autism is no longer a diagnosis of hopelessness.  It is instead recognized as a spectrum disorder ranging from mild to profound.  Lynda's autism was in the severe range but proper training could have made a lot of difference.

I can't do anything about the past.  It is what it is.  I can make a difference in the future of children like Lynda.  Early intervention is the key to unlocking the possibilities.  Applied Behavior Analysis is the only therapy that has been proven by research to be effective especially for children on the more severe end of the spectrum.

If you suspect your child, grandchild or other child in your life has characteristics of autism, get help.  Don't give up after one door closes.  Keep looking and advocating until you receive help.  In 2013 there is still a great divide among physicians and psychologists who will diagnose a child early, preferring to wait for the child to "outgrow it".  They won't.  Don't accept no if your child displays the symptoms of autism.  It can make the difference in the number of possibilities available to your child for a lifetime.

Falling Leaves and a Child With Autism

Like most kids, Lynda loved to play in the leaves.  In fact, regardless of what event was planned....if there were leaves on the ground that was entertainment enough.

If there was a pile of leaves that someone had raked she was going to be right in the middle of it.  Like many children with autism Lynda liked to hold a leaf up in front of her eyes and move it around slowly.  She gave the leaf the attention that one might reserve for viewing a fine diamond.

The first scratch Lynda ever had was on her face and happened when she was playing in leaves and slipped.  She scratched her face on a stick or something on the ground.  I was so worried that it would leave a scar on her face since she was so fair skinned.  It didn't but I quickly learned that I was going to be lucky to keep her in one piece.  A few scratches here and there were going to probably happen.

That was actually in the spring during her first Easter Egg hunt.  She was not so impressed with the eggs but loved the leaves.

And that's kind of the story with most activities that Lynda participated in.  There were games and activities planned for typically developing children which they loved.  There was an equal amount of fun had by Lynda, a child with autism who amused herself with other things....like the leaves. 

Heaven's Heart

Every day I think of Lynda and I thank God for sharing her with me for 42 years.  Working on the design and etching for her headstone has been a small tribute to her life.  When she is shown with angels surrounding her here on earth, I believe it is just a small depiction of the love that God had for Lynda while she was with us.

In heaven she knows her angels by name.  She has also seen the face of God and felt the arms of Jesus wrapped around her.  I look toward the heavens and marvel at what is beyond the clouds.  Beyond this world.  I rejoice with Lynda for finally reaching home.  Like the heart cloud there is an emptiness with her gone from the center of my heart.  Knowing she is in the ultimate place of joy and happiness, I can now concentrate on the heart cloud on the outside symbolizing eternal love instead of the empty blue space left.

It looks as though the clouds are slowly filling in the blue emptiness of the heart.  I think it's like that with grief.  One day my heart will be whole again and when it is....I will have space to remember all of the wonderful memories as the sorrow takes less and less space in my heart.  She will always be in my heart.  Always.

Autism....the world from a different perspective

I love this picture.  It is such a great visual.  Children with autism often seem to be marching to the beat of a different drummer.  When everyone is going in one direction...a child with autism often seems to be going against the flow.  He is paying attention to how to line the toys up in perfect lines while the other kids are playing with the toys as they were designed.

It is important to keep in mind that seeing the world from a different perspective is not inherently a bad thing.  Great designers and inventors, scientists and engineers see the world from a different perspective.  We are thankful that they do because of the contributions these different perspectives have made to our world.

We certainly want children with autism to be able to improve communication and social skills to be able to interact with their environment because that is where they live.  The environment can be modified and the child with autism can receive accommodations to better bridge the gap between where he is and where he needs to go.

What is dangerous to me is the attitude that we must "fix" the child with autism. We need to be careful that we are making decisions for a child with autism that will help him better reach his potential while being fully aware that each child is an individual with different gifts and talents.

If a child is unable to communicate effectively we need to help him develop the skills necessary to communicate.  We do not, however need to teach him what to say.  The same is certainly true of social skills.  A child with autism has to be able to navigate the world with behaviors that are considered socially acceptable for his culture.  He does not have to be a clone of every other typically developing child.

The world from the perspective of a child with autism may be a different one but it is no less valuable than that of his typically developing peer.  As we strive to help children with autism be successful in our educational system and the world as a whole....we need to always remember to treasure the differences that make each child an individual masterpiece.

More Pictures of the Etching of Lynda's Stone

 These are some of the pictures of the different processes of the etching.  The picture on the left is the finished etching before color was added.  It would have been a beautiful piece even just etched in white.

Below is the artist, Gail Morton.  The pictures aren't in the order of how the stone was etched.

 Once the paint is applied to the etched areas, it is scraped off with a razor so only the paint in the lightly etched (scratched) places holds the paint.  The places that aren't prepared to accept paint are scraped off with a razor and the smooth stone remains shiny and beautiful.

Below all of the paint has been applied and now Gail is scratching the paint off of the areas that will allow the black stone to show through.

The whole process is thinking backwards in that you are starting with black instead of white.  You have to leave a tiny black line to separate the colors as the paint flows into the different areas.  It would all twist my brain into a knot but Gail has etched for eleven years and completed this from start to finish in three hours.

AMAZING!

Lynda's Color Etching

Today Russ and I had the most awesome experience.  We were able to watch the artist's interpretation of my drawing and idea for Lynda's headstone be etched by an amazingly talented etching artist, Gail Morton.

We went to the Pontotoc Monument Company in the first place because Gail did the etching and is a colleague of ours who teaches art at North Pontotoc High School.

When we first went to choose a stone it was just weeks after Lynda passed away.  I wasn't prepared for how choosing the lettering for the headstone would affect me.  When they handed me the mock up of the stone with her name, birthday and death...it was overwhelming.  I've never been to a monument place.  I've never imagined what Lynda's headstone would look like.  I wasn't ready to face this task so soon after the funeral but it takes so long to get the stones.  We needed to know how much it was going to cost with the color etching.  So there we were and that day taught me one important thing.  I did not need for the stone to be finished and installed for me to see it for the first time.  When the reaction I had to a computer generated drawing of the font with her name and dates was so emotional,  I knew I needed to see the stone at different stages of development.

Gail was gracious to allow us to watch her etch the stone for the entire process.  It was the most incredible experience both the process of etching the stone and being involved in the final tribute to my daughter.  Gail and I both had made numerous drawings and gone over the tiniest details.  Today was the day of watching the drawing become a part of the stone and it was just the most amazing experience.  God always placed this picture in my mind when I worried about Lynda.  No matter where Lynda was God was always there.  No matter what her earthly conditions were, God's angels were constantly wrapping her in love and ministering to her.  I knew this was what I wanted on her headstone.  God led me to the person that could not only create the piece but would also willingly include us in the process even allowing me to etch some of the drawing and hide Nana loves you in the drawing.

The lettering had already been sandblasted and painted white but the sandblaster has a few more details to finish.  Between the two dates will be a heart and a computer generated scroll design.  The design will be sandblasted and painted white also.   Gail will etch the heart in pink on Monday after they have sandblasted the two designs on each side of the heart.  They'll clean it up and install it at the cemetery soon.  Probably at the end of next week which will be the third month anniversary of Lynda's entry into paradise.

Today I never shed the first tear as I watched the headstone being etched.  I believe the angels that so carefully watched over Lynda ministered to my heart today.  I felt their presence.  I know that today as Gail carefully etched Lynda's likeness on to a black granite stone, God was in that room.  It was holy ground.  We worshiped there.  God drew near and I could almost hear Lynda's sweet laugh as the stone appeared to come to life with the image of her sitting cross legged and clapping.

I am so thankful that God has placed just the right people in my life to provide the final tributes to Lynda.  Her stone is remarkably special which is just as it should be for such a special person. 

The Bluebirds

About a week after we put the angel wings at Lynda's grave I was walking over when I noticed a bird sitting on the top of the display.  As it flew away I could see the beautiful blue wings and the rust colored breast and knew a blue bird had stopped there to perch.  Bluebirds are beautiful to me and  they're also a bird that I don't see every day.  When I saw the bluebird resting on the wrought iron plant hanger beside Lynda's grave I  thought about the bird being referred to as "the bluebird of happiness".  How ironic.  This was a bluebird but certainly not a bluebird of happiness in the middle of the cemetery.  But there it sat as if it were part of the display we had created and the symbolism was not lost on me.

There must be flocks and flocks of bluebirds in heaven, each more iridescent than the other. 

I thought that I had read that bluebirds didn't flock but traveled alone or with a partner.  So I thought this bluebird was the only one or at best one of two who lived nearby.

Last week as I was walking around the cemetery looking at stones nearby, I saw another bluebird.  And then another and another.  Obviously I was wrong about the bluebirds not flocking because there not far from Lynda's grave was a small flock of bluebirds.  They spread their wings when they saw me and I watched their blue wings catch the sun's light.  The beautiful undersides of their wings shine and glow when the sun  magnifies the brilliance of the blue.                                                            

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Apparently they have made this their home or somewhere close.  I see them often when I'm visiting Lynda's grave.  Maybe they're there to remind us all that this world is not our home.  The body we use here on earth is not our final body.  For a Christian, nothing is final about the grave.

Paul said it best.  “We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord.” 2 Corinthians 5:8.

So today,  two months and three weeks after Lynda left this body and winged her way to heaven with Jesus I look at these beautiful bluebirds and consider them a gentle reminder from God that the cemetery IS the place to celebrate happiness for Lynda.  To be absent from the body is to be present with the Lord.  The only sadness that I have is because I miss her.

When no one disturbs the quiet of the cemetery there are beautiful bluebirds throughout the grounds.  Sometimes a bird lingers so it can remind a grieving mother that true happiness is knowing your child is safe in the arms of Jesus.

Lynda's Monument

Two months and three weeks after Lynda's death the headstone has arrived, the sandblasting for her name and dates was completed today and the drawings are finished for the etching to begin tomorrow afternoon.  I never realized how long it took to get a monument but now I'm understanding why people go ahead and have their monuments completed except for the date of death.

Actually, we are having custom artwork etched by an artist but I think even if it had been a regular go to the monument place, point to this one, tell them the name and dates....it still takes months to get it to the point of being installed.  Another thing no one thinks about or knows about until they're involved in getting one for a family member.

Lynda's stone is black granite because we wanted color etching and that's the only color they can do it on.  They will sandblast the words and dates and fill with white paint.  Then there will be an 8 X 8 color etching of a picture that has always been in my mind about Lynda.  Her angels over her as she played, her angels watching over her as she slept.  At home.  At NMRC.  I know she had angels with her at all times and this is just how I've always pictured them....close, talking to her, playing with her, keeping her happy in ways that only God's messengers can do for a child who isn't able to communicate with the other humans here where she lived.

The special part about the headstone is that I was able to design the drawing to be used and Gail Morton, a colleague of Russ and mine who teaches art at the high school at North Pontotoc will be doing the etching.  She is going to allow us to watch her tomorrow afternoon at 2:30 and I'm even going to get to help do some of the etching.  I am thrilled beyond words to be able to actually put some of the sketch on to the stone.  I will certainly be letting Gail with the experience at etching do the hard part.  LOL  It's an interesting process of starting with black instead of white and having to leave a black line between areas that are to be filled with color.

The etching will be somewhere between Gail's drawing at the top and mine at the bottom.  The colors will be like the one at the bottom but on a black stone it will have a different appearance.

The picture we're using is one of my favorite's when she was seven or eight years old.  That's always the age she will always be in my mind.  That was two or three years before the stroke.

This was a school picture and was captured while the staff sang "Happy Birthday" to her.  The photographer was told to snap it at the end when she would clap.  It worked and is just the most natural looking picture.  If you've never met Lynda...this is the white haired dart.  Just a beautiful little girl who was so happy in spite of all the health issues she had.  My mother made the purple jumpsuit.  Again, my favorite.  Can't you just see the mischief in those blue eyes?

How I love this little girl.  Can't wait to get to get to work on the artwork for her headstone tomorrow to get her stone in place. 

Cutting the Grass

Here's a view of the grass after we replanted the part where the riding mower did a donut at the end of the grave.  The grass is just like what we used to plant before Easter for the pre-k kids in Florida to take home with their dyed Easter eggs.

Yes, I'm cutting it with scissors.  We don't have a battery powered weed eater but that's next on my list. There's not very much and it's nice to just have some to cut (even if it is with scissors).  Last night we did something that probably has never been done in the cemetery.  Because it was supposed to frost, we put a white sheet over the grass and secured it with four tent pegs.  It was a little strange to see a grave covered in a white sheet (especially from a distance).  We went back before school this morning and took it off.  It was covered in frost so we were glad we did it.  I think we'll have to do it again tonight and then it's suppose to warm up.  Right now we're just trying to keep it cut low enough that it doesn't offend anyone and we're trying to keep it alive for a few more weeks until it covers all of the ground again.  Hopefully then it will form a little bit of thatch to keep it from being muddy all winter.

When we go to water the grass (and trim it) I've been cleaning babies' marble stones that have the black mold on them.  Most of the babies died in the 40's and their parents have passed away.  It gives me something to do.  Years ago when they buried their sweet baby they came and took care of the site bringing flowers and watering the grass with their tears.  Now, you can't read the names of the children on the stones but with a little gentle scrubbing with a toothbrush, baking soda and peroxide years of weathering are removed.  They don't look new.  They just allow us to read their names and know that they were important to someone.

Do Children With Autism Feel Pain?

I would like to have this made into billboards across the world.  I have had such a problem convincing some of the parents of children I teach that this is true.

One of the first things we are taught to do as board certified behavior analysts (BCBA) is to rule out any medical issues before beginning any type of behavior modification program.

It is easy to fall into the trap of assuming that if a child throws himself down on the floor screaming and kicking that it is behavioral.  Especially if that does happen on occasion as the method of choice to vent.

I've had many parents or teachers tell me that a child is just manipulating the adults.  If a child isn't able to communicate effectively and he is in pain he may definitely use some inappropriate tactics to indicate he is in pain.  Ethically we must rule out any possibility of pain even though a child may have autism and behavioral issues.  We must err on the side of caution and assume the child is experiencing pain if he is showing standard signs of pain.  To assume that the child is simply demonstrating behavioral problems and ignore the possibility of a problem that is actually causing pain is both dangerous and a form of profiling.  Children with autism experience pain just as typically developing children do.  They may show many of the same signs or they may demonstrate a completely opposite response to the pain as their neuro-typical peer.

If you look at the situation from the eyes of a child with autism and put yourself in their shoes you will find that you approach the problem more as a detective trying to discover the problem from the clues rather than as a policeman who is ready to punish bad behavior.

Children with autism feel pain.  Just because they cannot speak doesn't mean they don't have anything to say.  Just because they can't point to what hurts or even answer yes or no to your question of "Where does it hurt?"----in no way proves the child is not experiencing pain.

I would venture a guess that if any of us were in pain and unable to get anyone to notice, as the pain got worse and our patience grew thinner, we might resort to some pretty "behavioral" strategies, too.  Print this little sign out and put it where you'll see it every day if you work with children or adults on the autism spectrum.  Err on the side of caution and assume if a child is demonstrating the signs of pain....he probably is in pain.  That's what you'd want someone to do if it were you, right?

How to Make Diapers in One Easy Lesson

When Lynda came to live with us in 1975 she was three years old and weighed 26 pounds.  She was able to wear the largest size pampers (in the purple box with the cute baby).  Luckily Lynda was small so she was able to wear pampers a little longer than a typical toddler.  However, because Lynda was constantly taking her clothes off we had to dress her in jumpsuits that zipped up the back.   This was so that she wasn't sitting around in her birthday suit all of the time.  She didn't understand the whole clothes on or clothes off routine and frankly, toilet training was way down the list of priorities.  Controlling her seizures, determining why she vomited after almost every meal and passed blood in her stool topped our list... along many less life threatening but important issues.

So what do you do when your child is five years old, not toilet-trained and there are no commercially available disposable diapers on the market that fit her?  Well, we couldn't use cloth diapers.  We tried that and it was a disaster.  We couldn't wait until youth size or adult diapers were introduced onto the market. That didn't happen until 1987 when Japan introduced adult diapers and they began to grow more popular in the 1990's.

Between the years of 1977 and into the early 1990's we made larger diapers for Lynda from two pampers and duct tape.  When I see all of the cute patterns for duct tape, I think about how much I would have loved having those back in the day.  Of course, when there is cute duct tape patterns there are also youth and adult diapers.  There are  so many different types and brands of adult diapers now that it is difficult to even figure out which one someone might need. 

For about 13 years,  Larry and I made diapers every day.  Jan had to make diapers at school. In addition to changing her diaper babysitters and my mother also had to make the diapers. We did it by trial and error and necessity.  We cut the top four or five inches off the top of the front and back of a diaper.  We duct taped that piece to the top of the diaper, front and back.  We then took the plastic off the remaining part and folded it and used it as an extra double padding inside the diaper.  To extend the size of the diapers around her waist, we folded pieces of paper towels the size of the duct tape so that the tape never touched Lynda's skin.  The sticky tape extended out a few inches on both sides to attach it.

Basically we used two diapers each time we changed her and lots and lots of duct tape.  I estimated we probably changed over  2,190 diapers (averaging 6 diapers a day...if we were lucky) a year.  Over 16 years, a safe estimate of diapers and changes would be 35, 040 changes and twice that number of diapers used....70,080.  You can bet we were thrilled when adult diapers became commercially available. Of course, we didn't have any financial help because we lost Lynda's benefits when we adopted her.  If you don't have a family member who needs products like larger sized diapers when they haven't been made commercially available yet, it would never cross your mind of the need for them.  Other parents handled the challenge in different ways.  This was our solution.  It just became a part of our daily routine.  Sometimes we were able to make a bunch of diapers in advance.  Our goal was to keep Lynda dry and comfortable.  At the beginning it was until we could get her to stop taking off her clothes and work on toilet training her.  After the stroke, the goal was just to get her to where she could stand up and walk to the place we wanted to change her diaper instead of us having to carry her.  Then as time went on it was just a part of taking care of a child who at the age of 20 had the cognitive abilities of an infant.

When parents have a baby, the expectation is that at the longest they will be using diapers until the child is three.  Not that long if our child's a girl.  We're celebrating if we've managed the complete ritual by age three with a lot of our boys.  With a child with special needs, toilet training is a milestone often mastered at later times.  With consistency and determination on the part of the caregivers most individuals with autism can be toilet trained and independently handle those matters without a great deal of gnashing of teeth (on the part of the parent or child).  Lynda's situation was different in so many ways and the bottom line is we did what we had to do and moved on to the next part of daily living.

If you are a parent of a child with autism in 2013 the road ahead is still going to be bumpy and take a few detours now and then.  There's isn't enough of the correct types of ABA therapy for children in the critical periods of their development (birth to seven) and physicians often are not fluent enough in autism to provide the best practice in medication and services.  You will have to advocate and there is no doubt you will get tired and want to give up at times.  Then you'll look into the eyes of your child and realize why you're traveling this road in the first place...to provide the best of everything you can for your child on the spectrum.

If you happen to have an older child who isn't yet toilet trained just remember this.  You don't have to make their diapers.  It is now the law that an education be provided for your child as imperfect as it is.  This wasn't available to Lynda in 1975 because she wasn't six yet even when the law limped into place.  There is much to change but we autism dinosaurs who were there before the days of adult diapers are still fighting and praying for all of you younger parents beginning the journey we have traveled.  Hang in there!  Your child is worth every struggle you go through.

Kitty - Kitty....

 There are so many things I would like to better understand about autism and about language acquisition.  Research has demonstrated many earlier theories and modern technology such as the PET scan has allowed us to actually see what parts of the brain are activated when a child speaks or attempts to retrieve information to answer a question.

When Lynda came to live with us in 1975, she could say about 7 or 8 words and one of them was "kitty- kitty".  Kitty-kitty meant any four legged animal (cows, horses, dogs) but nothing that wasn't an animal.  It's so interesting to me what words "stick" and Lynda's use of kitty-kitty to signify any animal was certainly  an economic use of a vocabulary consisting of no more than eight individual words.  She combined those eight words to create new meanings, as you have probably read in previous posts.  Like so many children with autism, Lynda had much better receptive language (understanding what is being said to her) than expressive language (verbal language, sign language).

I don't have any videos of Lynda when she was little.  We were using reel to reel at that time.  LOL  I do have her sweet voice on a cassette tape ---the forerunner of CDs and DVDs for those of you who are too young to know what cassette tapes are. 

Kitty-kitty was one of Lynda's words when she came to live with us at three years old and was a word she still used when she went to Millcreek prior the stroke when she was ten.  During the years she would say a new word but where our short term memory can only hold seven new pieces of information before having to transfer it to long term memory, Lynda was unable to hold more than seven words in long-term memory at that time.  I'm sure her continuing seizures contributed to her cognitive impairments.  Her stroke interrupted any chance of language acquisition.

I don't know how old she was when she said her first word.  I don't even know what her first word was.  I just know that kitty-kitty was a favorite word. I would love to know what it was about that word that "stuck".  The more I understand about autism the more I realize that our knowledge about autism is still very limited.  That's why this population of children are so fascinating to work with.  Each child is uniquely and wonderfully made.

My little girl who could only say a few words for her first ten years of life and no words at all for the last thirty years has a limitless vocabulary and the ability to communicate with the saints.  I can't wait to get to heaven to be able to talk to my daughter and to thank Jesus for loving us enough to die for us.  I cannot ever stop praising God for promising that we will see Lynda again and spend eternity together.

Autism ...Then and Now

When we adopted Lynda in 1975 the criteria for a diagnosis of autism was very different than it is today in 2013.  I think this is part of the reason that the statistics of the prevalence of autism through the years may be a little skewed.  In 1975, Lynda was diagnosed primarily as being mentally retarded.  The criteria for autism at that time was similar as it is today but many professionals felt that if a child had seizures and other pre-existing cognitive impairments the child was not autistic but rather mentally retarded.  
Now, in 2013 we realize that autism presents with many different conditions and that it ranges from mild to profound.  It is now considered a spectrum disorder because of this reason.  In 1975, the incidence for autism was 1 out of every 5,000 children.  Now the incidence is 1 out of every 50 children. 

I in no way am suggesting that the incidence of autism is not rising at alarming rates because it is.  I personally believe that when we finally discover the cause of autism we will find that there is no one cause.  Just as some children are susceptible to allergies or other conditions I think some children are obviously wired from the onset to be on the spectrum.  To determine why this is ture is what is driving the research.

We didn't recognize Asperger's Syndrome until 
1994 although the disorder was discovered by Hans Asperger in the 1940's, the classical autistic symptoms--low capacity for communication and social interaction, restricted and repetitious stereotyped behavior.  Asperger's is usually different in that it is a less disabling form than the symptoms found in infantile autism.  Asperger's Syndrome was added to the American Psychiatric Association's official diagnostic manual in 1994. It's sometimes distinguished from a special category of "high-functioning" autism, chiefly on the grounds that it implies better verbal than non-verbal intelligence.  Even though Asperger's was considered to be a form of autism, these children's symptoms were night and day different than the children considered to have infantile autism (like Lynda). 

May, 2013 the diagnosis of Asperger's Syndrome was eliminated in the DSM-5 published by the American Psychaiatirc Association and is the primary manual for a formal diagnosis of autism and related disorders.  Now Asperger's Disorder, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) has been replaced by one umbrella term of "Autism Spectrum Disorder" and then further distinctions will be made about the severity levels (level one, level two or level three).

Is this all a little confusing to you while reading about the changes over the years in the diagnosis of autism? The classification of children with autism or Asperger's.   You can see how the prevalence depends on what criteria we are using to define autism. In addition, these variations throughout the years from 1975 to 2013 have caused families of these children to have to advocate for everything from being included in special education to being treated through the medical system with insurance coverage.

 I believe that over the last four to five decades, we have environmentally changed our DNA.  Research has shown us that many of the pesticides used in earlier years have been linked to the increase in the incidence of ADHD.  Can you just imagine how many substances we have introduced into our atmosphere, water supplies and foods (to name just a few) that could easily damage the delicate DNA of a developing human.  Research is definitely needed to determine what causes some children to be mildly affected by autism and others to be so severely involved that they require 24/7 care.

I remember in the early 70's  attending a state convention of the ARC (then known as the Association for Retarded Citizens) and meeting family after family with children with Down Syndrome.  The alarming fact was that most of these babies were being born to young mothers not the mothers over 40 that had been the norm.  I have never forgotten how that information stunned me and frightened me at the implications.  It wasn't because younger parents were parenting children with Down Syndrome but rather what had happened to our DNA in previous years to bring about this huge change.  I feel the same way about eliminating children with Down Syndrome through science as I do those with autism.  Statistics show that 90% of babies with Down Syndrome are aborted in the United States.  

Obviously, I love kids with autism just as they are otherwise I wouldn't have adopted a child with autism and spent my life working with children with autism.  I believe to completely eliminate autism from our world would be a tragic mistake because many of our scientists, inventors and master artists have obviously been on the autism spectrum.  We need people who think outside the box.  We need people who are on the autism spectrum.  There are many ways science can improve on the quality of life for these children and adults by better understanding the medical issues that often accompany autism (seizures, intestinal tract issues, inability to sleep).  I cringe when someone talks about searching for a cure for autism.  I know even that statement means many different things to many different people.

It is such a slippery slope when we as a society begin to define what is typical behavior and who is "normal".  When we are able to turn off or turn on all of the genes that lead to any condition that might be offensive or considered less desirable than the defined "normal"....what a boring world of humans we will have created.  I wouldn't have changed a thing about Lynda before her stroke at age ten except to have been able to have controlled or eliminated her seizures, her severe intestinal problems and other medical issues that compromised her life and caused great pain.

Lynda was a delightful little girl with all of her autistic quirks.  I believe that had she developed beyond ten years old without having been abused and suffered a massive stroke, her seizures would have been better controlled with the newer medications as would her extreme hyperactivity.  Because she was already speaking some words, research shows us now that with time she would have most likely added to her vocabulary, especially with more and more emphasis on autism in later years.

Lynda was an enigma.  She was definitely the child I wanted.  She certainly presented us with challenges.

In many ways we know a great deal more about autism today in 2013 than we did in 1975 when Lynda came into my life and PL-94-142 was first enacted to her and others like her a right to a public education.  The law has been revised and renewed over the years but one thing remains the same.  It was never written to be easily interpreted and enforced and it has never been fully funded.  Parents still have to advocate for services for their children and those in Mississippi are not able to receive Applied Behavior Analysis (ABA) the only research based method of teaching young children with autism unless parents pay for the services themselves which can be extremely costly.  Other surrounding states and most of the nation provide ABA therapy through insurance and medicaid waivers.  While early intervention can change the course of the life of a child with autism it is sometimes more frustrating to parents today to know what will help their child become independent but not be able to afford the therapy due to politics.

If you live in Mississippi or a state that doesn't provide ABA therapy to children with autism, Down Syndrome or other developmental delays please let your legislators know that it is necessary and a cost effective way to reduce the amount of money that will be spent over the lifetime of an individual by providing early intervention now rather than institutionalization down the road.  It is almost criminal in my mind to know ways to help children learn that will enable them to be included in regular education classes but not provide that service for children in the early, critical years of development (birth to age 7).

Children with autism will always have characteristics of autism and that's great in my opinion.  However the opportunities that being able to communicate and have social skills necessary to navigate our world can make a huge difference in the quality of life for children with such developmental delays.

Since 1975 have we changed that much in the field of providing services for children with special needs?  In 2013, I sometimes wonder when I see parents of these children still struggling with many of the same issues we wrestled with almost 40 years ago.  I will never give up though.  Children with special needs were designed and made by the same God that made all of the rest of us.  As Temple Grandin says "Different but not less".

We Thank You For The 3,000 Views....

One of fears of all of us who lose a loved one is that they will be forgotten.  As the parent of a special needs child I think that feeling is even intensified.  So many people have told us with words or actions that our children are not as important, as deserving, as necessary....(fill in your own words) as those children with a "normal" IQ and the promise of being a contributing citizen one day.

This isn't going to be a post about the many ways I feel special needs children and adults "contribute" to our world but rather a post to thank you for viewing Lynda's blog indicating to us that Lynda's story was important.  It was worth telling.  Her life mattered.

For the bottom of our hearts, her family and friends thank you and encourage you to share www.lyndataylorsmith.blogspot.com with others. 

When Lynda Fell Asleep....the World Stood Still

When Lynda was a little girl, she rarely took naps.  IF she somehow fell asleep, the world stood still.  No one woke her up at home.  No one woke her up at school.  It didn't matter to us when she slept IF she was sleeping it was a miracle and you don't mess with a miracle.

One afternoon when I went to pick Lynda up from LCDC, I parked in the parking lot of the Episcopal Church where the program was located at the time and left the car running while I went to the door to get her.  A staff member met me at the door and told me she was still sleeping so I told her to let her sleep.  I'd wait.  As I turned to walk back to my car, I saw a man open the door and get into my car.  Not wanting my car to be stolen, I start running toward the car screaming at the man to get out.  He did get out WITH MY PURSE.

There were no cell phones to call the police and what idiot would try to steal a car in broad open daylight with people walking around?  More importantly, what 24 year old female would run after the man who had her purse primarily because it had a picture of her child and it was the only copy?

He didn't drop my purse and we never found it anywhere around although we looked and looked.  The incident taught me not to leave my keys in the car with the engine running even if I'm standing next to it because I'm convinced there's someone who is dumb enough to try and steal anything at anytime.

When I got back to my car after chasing the thief, I checked on Lynda and she was still sleeping.  Then it occurred to me.  What exactly did I plan to do if I actually caught up to the man?  Let me say at this point, I wouldn't recommend chasing a would-be car thief.   It's dangerous and not a wise choice.  In my defense I do have to say that when you're the parent of a child with autism who could go for 48 hours without ever closing her eyes.  When you have stood beside a child having life-threatening seizure after seizure....and fought for two years to be allowed to legally adopt her, you  lose touch with your own immortality.

It didn't take long for me to jerk myself back into the reality of just how poor a choice I'd made  to chase a person who might have a weapon but at the time....it was just second nature to move into crisis mode with only a second's warning.

I'm glad I didn't catch up to the guy who  tried to steal my car.  After all, I had just become the parent of a child with autism and operating in mother tiger mode was making me pretty fearless.  Who knows what might have happened?  It's not good to confront a mother tiger with a sleeping cub close by!

Two Months and Two Weeks

Two months and two weeks can seem like an eternity or it can seem like it was just yesterday and why not?  The memories of Lynda when she was four feel fresh.  It's hard to wrap my mind around the fact that her stroke when she was ten was actually over thirty years ago now.

I guess time is fluid in many ways as are memories.  Our brains are wired to assimilate death and loss in fairly predictable ways and if we're lucky enough to not get hung up in one of the stages of grief most of us move through the process eventually.  We never forget.  The tears never completely stop because the memories continue to catch us off guard.  Healing does come enough to continue to be able to move through life looking reasonably sane.

I cannot imagine the loss of a loved one if I didn't believe there was God.  That there is heaven and that because of Jesus we will see fellow believers again one day.... and that one day will last forever.  Lynda was my forever child.  We always said that when we adopted her we gave her a forever home and that was true for her short stay on earth.

God gave Lynda her real forever home in heaven.  He adopted her as one of His own and He prepared a place for her.  Thank you Jesus for the peace that you give my heart knowing that Lynda has safely arrived at her forever home.  

Hug Your Kids Today

Today all I can think about is how it felt when I hugged Lynda and she hugged me back.  Or after she wasn't able to hug, she would pat me on the back when I hugged her.

Oh, how I wish I could have just one more hug.  How I wish I could lay next to her and feel her warm body next to mine.

When a child hugs me, I just pray that he or she won't see the tears that are likely to follow the sweet hug.  Every little body feels like Lynda to me right now.

We always knew Lynda was a gift being lent to us.  We cherished the time we had but for a mother there is never enough time.

If you have kids (no matter their ages) give them a hug today.

How I wish I could hug all of my children today and all of my grandchildren.

I have the hope of hugging them all again.  Even my children who are waiting in heaven.   Believe me it's not the same.  Don't take for granted that you'll always have tomorrow.

Hug your kids today!

Lynda and the Butterfly

When Lynda died on August 3rd we had many preparations to make for her celebration of life service.  It was really difficult to know where to even begin.  We were still dazed.

As we drove around the square in Oxford that Saturday morning, we noticed a beautiful orange butterfly.  It wasn't a monarch.  It wasn't exactly like the one in this picture.  It was different and it was beautiful.  I watched it flit and flutter around the flowers.  It temporarily took my mind off of my my sorrow. 

When we lived in Ft. Walton Beach we watched the monarchs migrate by the hundreds through the coast line.  It was incredibly awesome to see them by the hundreds.

After doing a few errands, we went back to Booneville until we could meet with the funeral home that afternoon at 4:00.  When we began walking up to the front door of Coleman's Funeral Home in Oxford, we saw a butterfly that looked very much like the one we had seen earlier in the day.  It was kind of odd to see a single butterfly on the square.   Even stranger to see another one that looked identical but late in the afternoon and in a completely different location.  We watched the butterfly hover around as Glenn met us at the door to begin making the final plans for Lynda's service. 


I thought it was rather an unusual butterfly when I saw it the day Lynda died.   Two locations in Oxford at two different times of the day.  It reminded me in my intense sadness that although I was grieving for losing  Lynda, she was free like the butterfly.  After two months, when my mother started talking about a butterfly on her porch, I asked her if it was a monarch.  When she said it wasn't, I asked her to describe it.  Her butterfly sounded just like the one we saw the day Lynda died.  Then she told me the most amazing thing.  The butterfly stayed around her front door.  Every time she went out front, the butterfly would fly around her.  It did that for a couple of days.  Then one day, the butterfly lit on her arm.  She said she just stood there and looked at the butterfly and wondered....  never in her 90 years had a butterfly just flown to her and perched on her arm.

She and I neither really had to wonder.  We accepted the precious gift that God shared through Lynda's life and the symbol of her new and improved life in heaven....

Love Never Fails

 <sup>Love always protects, always trusts, always hopes, always perseveres.
 Love never fails.

I Corinthians 13:7-8   NIV  


For I am convinced that neither death nor life, neither angels or demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus the Lord.

Romans 8:38-39   NIV  

I praise you because I am fearfully and wonderfully made; your words are wonderful.  I know that full well.

Psalm 139:14   NIV</sup>

Lynda...

Adoption...not a second choice, a fallback option or because you can't have "your own", but believing you are seeking to bring home the very child God created with you in mind, fully equipping you to be the very parent He created you to be.

Today I Am Thankful You Are Free

This is how Lynda lived the last 30 years of her life.  She was like a beautiful butterfly unable to fly.  The stroke limited her mobility.  It limited her opportunities to learn.  It placed her in a situation where she was totally dependent on others for her care.  She was well cared for and loved during those 30 years both at home and at NMRC.  Still, she was held as a prisoner by the body and mind that resulted from her experience at Millcreek and her massive stroke.

On August 3, 2013---God removed everything that was holding Lynda back.  He carefully slipped His hand down from heaven and gently lifted Lynda's beautiful soul from the body that was holding her captive.

Through death Lynda was free to spread her wings and fly into the arms of Jesus.  The jar (her body) was broken but the butterfly (her soul) was as beautiful as the day God created her.  For eternity she will soar with angels and rest in the arms of Jesus. 

The Nightmare of Lynda's Stroke

We left Batesville, Mississippi headed for Magee, Mississippi with several things going through our minds.  We thought this seizure was going to be like the others.  We were also planning to remove her from Millcreek since we had an expert confirm our suspicions that she was not being taken care of properly.  

 Nothing, however could have prepared us for what we found. 

 From the minute we walked into the Magee Hospital, I felt like I was taking a trip back in time.  The hospital was old.  The rooms were small and didn’t have bathrooms in the patient’s rooms.  When we asked to see Lynda Smith the nurses seemed to be hesitant to direct us to her room. Then we were actually taken to a public bathroom in the hall. This is where we found Lynda in a bed that had been pushed into the bathroom. It was a small public bathroom that normally was shared by several of the patients.  So small the door wouldn’t close.

 

 I was horrified.  I felt like I had walked into a scene out of a bad black and white movie about institutions and hospitals in the 1940’s.   I actually see everything that happened from that moment in black and white and a sort of distorted tunnel vision. Much of the early scenes are played in slow motion.    How could this hospital be so full that they had no room for my ten year old daughter?  We found quickly that there was no shortage of available rooms.  When we asked for a real hospital room, one became available immediately.  In fact, there were several available rooms.   

In reality she  should have been in the Intensive Care Unit but they obviously didn’t really value her life at all.

  I prayed that I would wake up and this would just be another bad dream. I usually dreamed in color but this dream was totally portrayed in black and white and nightmarishly realistic.  Surely I would wake up soon.  But I was awake and I was actually living this nightmare along with Lynda.

When we arrived in Magee, it had been several hours since the seizure was discovered, longer since it actually began and going on eight hours since we had been called and Lynda was hospitalized.  I noticed immediately that she was still having small seizures and that her eyes were turned and fixed to one side.  No doctor recognized that she was having seizures.  Her right side was obviously paralyzed although the doctors told me it was just the massive amounts of medication used to stop the seizures.  I knew differently.  Her right hand was already beginning to curl into a closed fist with her thumb tucked in between the first two fingers.  There was clearly something terribly wrong but no one but Larry and I recognized it and we couldn’t get anyone else to believe us.  We felt like we were in a glass bubble;  Larry, Lynda and I.  It was as if we were talking to the figures dressed as doctors and nurses who moved around us but they were ignoring us.  Maybe they couldn’t see us. Maybe it was a dream after all.

Finally someone spoke and the information we pieced together painted the picture.  Lynda had pneumonia (although I had called the day before the seizure and was told she didn’t even have a cold).  She had a seizure in the middle of the night;  no one found her until 6:30 A.M. Instead of transporting her to the emergency room immediately as they agreed, they called a nurse at home who came down to the facility, took her temperature finding it to be 106+ and then called the ambulance who transported her to the hospital,  All of it was too late.  The little body and brain couldn’t take any more insult and injury.

Seven years and one day from the day Lynda bounced into our lives, she suffered a massive seizure and stroke, paralyzing her on the right side of her body.  It forever changed the child we knew to someone who couldn’t hold her head up, couldn’t suck her thumb and who didn’t recognize her Nana anymore.  I asked them what medications she was on and found that she wasn’t receiving her clonopin which was the one drug out of the three she took that stopped the focal seizures she was still experiencing.  I asked why they weren’t giving her clonopin and was told it didn’t come in any form except pills which she obviously couldn’t swallow.  I called our pediatric neurologist Dr. Robert M. Boehm at LeBonheur and quickly explained the situation to him, my fears of paralysis and the continuing seizures.  He told me to tell the doctors to give her clonopin pills rectally and to keep him informed about her vitals and progress.

            We relayed the information on to the Magee doctors although they were not at all convinced that she was having seizures.  They kept saying that there was nothing wrong with her except she was overly sedated from all of the medications they had to use to stop her seizures.  They gave her the clonopin and within a few doses, the focal seizures stopped but I could tell that she was paralyzed.  I knew Lynda had serious problems that no one at the Magee Hospital seemed to know what to do about and more importantly, they obviously didn’t care.

            There were no cell phones in 1981 and Lynda’s room didn’t have a phone.  I had to walk down the hall to a waiting room and call our family or the doctors in Memphis from a pay phone.  The black and white movie never stopped.  As I was calling a friend, I remember that my thin gold add-a-bead necklace broke and six or seven gold beads bounced on to the floor and rolled away.  I still can see that whole experience as if I’m hovering above the room and watching it happen to someone else.  As the necklace was breaking and the beads spilling all over the dirty floors in the pay telephone room, I remember thinking that this is exactly what our life has just done.  It has broken apart and everything we have known and loved is rolling around out of control. 

            Lynda’s vitals were not good.  Her blood pressure was 60/40 when she came in and it wasn’t getting much better.  She had pneumonia so that had to be treated with antibiotics.  Most disturbing, she was lying in a rather fixed position with her head and eyes turned in a strange and peculiar way.  I started working with her right arm and leg to see if the tone had improved  but it had not.  We were really worried that she wasn’t going to make it if we didn’t get her out of the Magee Hospital.  It was impossible for the doctors to treat a problem when they kept denying a problem existed.  It was impossible to trust a team of physicians who had placed our daughter into a bathroom instead of a regular hospital room.

 I was in constant contact with our neurologist,  Dr. Robert M. Boehm who was also a parent of a special needs child.  He urged us to get her blood pressure stabilized and as soon as it was stable to transport her immediately to LeBonheur Children’s Hospital.

  From my descriptions, he felt she had suffered a stroke during the extended seizure.  When we tried to pass on information from LeBonheur to her attending physicians they basically ignored us.  They didn’t contact them.  They just kept telling me I didn’t know what I was talking about as they went about playing their roles in this black and white nightmarish movie we found ourselves stuck in.

I called LeBonheur one morning and gave them Lynda’s vitals and told them that we were leaving Magee and headed straight to Memphis.  I don’t remember how many days we had been there.  It truly seemed like time had stood still since we opened the doors and entered the hospital in Magee.  Our pediatric neurologists would be waiting on us in Memphis to do a CAT scan and other tests.  I told the attending physicians that we would like to have her discharged to take her to LeBonheur and they refused to release her.  I explained that our neurologist had felt it imperative that we get her to a larger hospital immediately and preferably to the neurology team who had worked with her during the past three years.  The Magee Hospital still refused to sign a release. 

  We gathered up all of her things and Larry took them to the car.  He drove the car up to the exit closest to her room, parked and came in to her room.  Picking her up, IV’s and all we started out the door to exit the hospital.  That’s when the nurses saw what was happening and yelled to the doctors.  Doctors and nurses came running down a long corridor toward us screaming that we could not take her out of the hospital.  We ignored them and continued walking toward the door.  We didn’t know what they would do if they made it to us before we opened the exit doors but I knew Larry was not going to loosen his grip on Lynda for a second.

  Suddenly one doctor was right beside us jerking the tubing out of Lynda’s arms so that she was no longer receiving the IV drip.   We continued walking to the door and I stood between Larry and the people in the hellish film we found ourselves in as they screamed to the top of their lungs “If she dies, it’s your fault.  You’re going to kill her.  You can’t do this…”   Over our heartbeats we could still hear them yelling as the double doors shut behind us.

 I quickly got into the back seat of the car and Larry handed Lynda to me. This began the race toward Memphis to try to save our daughter’s life.  I pulled the needles out of her arms that had connected her to the IV.  Holding her in my arms the whole four hour trip, I prayed all the way that she would not die on the way to Memphis.  I prayed we weren’t too late to save her although we knew that she was never going to be the same. 

We stopped long enough in Batesville to grab Larry’s medications and some clothes because we had not taken anything with us to Magee.  When we left Batesville, we thought we’d be going down, getting Lynda who had always bounced right back after a seizure and then we’d come right back home.   We had been there for days.  While we packed, we propped Lynda up with the pillows on our bed.  My mother and daddy were there to see Lynda before we went to LeBonheur.  They could not believe how she looked and  told me afterward that they didn’t think she would even make it to Memphis.  Truthfully, we weren’t sure either.  We just knew it was her only chance and we had to take it.