The Day I Became Lynda's Advocate

When Lynda became my foster daughter, she received Medicaid.  Because she received Medicaid, she had to see certain doctors and we had to go though the welfare department and social workers to make most decisions about Lynda's health.  It was a very frustrating situation to say the least.

When the social workers left Lynda the first day, they handed me two bottles of medicine.  One they called "the red medicine" and the other they called "the orange medicine."  Both were liquids and had dosages on the bottles.  However, it became evident very quickly that Lynda's family hadn't given her medications on any particular schedule.

It was decided that the best thing would be to admit Lynda into  Sacred Heart Children's Hospital in Pensacola, Florida to try and determine more about her seizures.  We were to be there for five days of tests.  We also had another foster child who was ten years old and in school so Larry had to stay with her and also work.  I went with Lynda to the hospital alone.  Nothing could have prepared me for the education I was going to receive that week.  We had been in the emergency room with Lynda in Brewton but never in the hospital more than just overnight.

Remember that this was 1975.  Public opinion of children with disabilities was not very informed (putting it nicely).  Congress passed Public Law 94-142 (Education of All Handicapped Children Act), now codified as IDEA (Individuals with Disabilities Education Act).  I can tell you from experience it took a long time to get to the point of the law being passed in 1975.  It took even longer for it to actually be implemented and it has never been fully funded.

When Lynda and I arrived at Sacred Heart, they came to get her to take her for her first tests.  I asked about going with Lynda to help hold her and was told that I couldn't do that.  I had always been in the emergency room with her in Brewton and was pretty good at keeping my cool.  When the nurses told me that I couldn't go with Lynda, I explained to them how hyperactive she was and about her problems with communicating.  They assured me that they could handle it and I wasn't needed.  In fact, when the neurologist came by later that afternoon he told me that I should go home and get some rest while she was in the hospital having tests run.  His idea was to just come back and pick her up at the end of the week.  I was stunned.  I explained to him (again) that she was my foster child.  I had chosen to take care of her and that was exactly what I was going to do so I would NOT be going home.

So Lynda went off for her first test and her first test was my first real test as Lynda's new mother.  I remember the way the room looked.  I remember where the door was and I remember the nurses bringing Lynda back in a wheelchair.  The expression on her face was absolutely heartbreaking.  She had wide pink bands all around her arms and legs and torso.  Some had blisters.  When I asked the nurses what had caused this condition, I was told rather matter of factly that she had been wrapped in duct tape to restrain her while she had been given a spinal tap.  No sedation.  No pain medication.  Wrapped in duct tape that when it was pulled off, took the skin with it.  Lynda was allergic to adhesive tape;  the kind on regular bandaids.  Imagine how duct tape would react with just about anyone's skin but a four year old blond, blue eyed and fair skinned child with allergies to adhesive?  It was like burns.  Besides this absolute atrocity, patients who have spinal taps back then were supposed to be kept reclining to avoid spinal headaches.  Obviously, Lynda hadn't been afforded this opportunity.  So for days I played with her in the big bathtub they had on the floor.  She loved water and as long as she was in the water floating the pain was reduced.  When she had to get out of the tub I put blankets into the green wagons they had in the hospital and pulled her around for hours and hours that turned into days.

When the nurses brought Lynda back after having wrapped her in duct tape instead of letting me go with her (and not bothering to tell me she was having a spinal tap), this 23 year old quiet, trusting person became a mother tiger and an life long advocate for Lynda.  I learned things I didn't want to know about.  I saw the world through different eyes as the parent of a child with disabilities.  I even saw the world that week through the eyes of a trusting little girl who called me Nana and I vowed to her that day that I would never, ever be conned into believing that a mother's instinct isn't important and worth following.

That first day at Sacred Heart in 1975 was heart wrenching.  Unfortunately there were more difficult days to come throughout the next 39 years.  There was never a doubt that God had placed Lynda into my life and I believe that in doing so I joined hands with the angels that surrounded Lynda throughout her life.  There was never a doubt that Lynda didn't need another angel.  God had plenty of those.  He needed for Lynda to have a Nana and an advocate for life. There were plenty of those too but for some reason He chose me.

"There is nothing to be afraid of if you believe and know that the cause for which you stand is right. You are ready to face anything and you face it with a humble smile... because you know that all of eternity stands with you and the angels stand beside you..."
Martin Luther King, Jr. 

"Uh-den Uh-den"....Lynda's Little Black spotted Dog

One of the first toys that we found that Lynda really enjoyed was the little dalmatian riding toy that she just pushed her feet to make him go.  She was just about three and a half years old...just a month or two after she came to live with us when this picture was taken.  As she rode him all around the house she made car sounds ---"uhden uhden."

We had brought our bright yellow bug with us from Oxford and Larry used it to go out to Jefferson Davis Community College where he taught.  Lynda loved to go riding in the VW bug!  She'd say "uhden uhden--bye-bye"....

When it was time for Larry to come home from the college in the afternoon Lynda would stand by the window in the living room next to the drive way.  She would begin clapping as soon as she heard the sound of the car (and that was way before any other human ear could hear it).  LOL   One of Lynda's favorite things to do as a little girl was to go riding.  When she looked like she was about to have a seizure, we often would put her in the car and take her riding a couple of blocks around the hospital there in Brewton.  Sometimes the riding would actually stop the seizure from progressing any further.  Of course, other times it had no effect.  As Lynda grew older and after she had the stroke, she continued to love to ride in the car or any other vehicle NMRC might have.  We often would go out to get Lynda and take her riding around Oxford.  She had her preferences for music while riding.  Slow elevator type music would get a thumbs down or actually a sliding down in the seat and a non-mistakable look on her face that said "CHANGE THE STATION".  She liked loud and fast and she had favorites among those as well.  When we had performed the task correctly and found a song that she approved of she would cheer and clap.  She'd sit up and look out the window.  Life was good when the wheels were rolling and the music was blasting even long after the yellow bug had been replaced with vans and other types of cars. 

Merry Christmas to ??????

Every family has different traditions for Christmas celebrations.  Some open gifts on the evening of Christmas Eve and others open gifts bright and early Christmas morning.  When our children were young we spent a great deal of time on the road between Larry's parents' home in Florence, Alabama and my parents' home in Booneville, Mississippi.  When we began our parenting career, we lived in Brewton, Alabama.  We brought all of our gifts and added them to the gifts already under Granny and Granddaddy Smith's tree and then did the same thing with Grandmother and Grandaddy Anderson's tree.  We opened gifts in Florence on Christmas afternoon.

Now have I mentioned in previous blogs that Lynda was really fast and with all that goes along with Christmas holidays, we didn't watch exactly what she was doing every minute.  She was where we could see her.  We could hear her and she was playing happily so we just went about our visiting until it was time to open presents.

Time to open presents....now that's where the fun began.  There were presents piled high under the tree wrapped beautifully.  I was usually the person who passed out the gifts to each person.  I picked up the first gift and looked for the tag.  Top.  Bottom.  No tag so I sat it down and picked up the second gift.  Same scenario....no tag.  Who wrapped the present?  Someone held up a hand.  Who is it for?  The person who wrapped the gift didn't remember.  Just look on the tag but that was the problem.  There was no tag.  There were no tags on ANY of the presents anymore.  The sweet little angelic girl dressed in her Christmas best sat holding Christmas tags in her hand.  Scattered around the room, we saw "the rest of the story".  Lynda had done what many children with autism enjoy doing.  She had taken all of the tags and put them all in one place.  Apparently in the mind of a child with autism all of the tags should go together.  I imagine if we hadn't come to open the presents, we would have found them all without bows, too.  There would have probably been a pile of tags and a stack of bows.

So, we changed the tradition that we'd all adhered to before Lynda.  Instead of handing out a gift to someone and reading who it was from, we now held up the gift and said "Who bought this gift?" or "Who wrapped this?"  IF the person remembered part A, we moved on to part B...who is the gift for?  That proved more difficult since a lot of gifts had been wrapped by the stores where the gifts were bought and really presents all begin to look a lot alike when they are stacked under the tree without tags.

The new system of "Guess who this present is for" proved more difficult than it sounds.  Many surprises like when Granddaddy Smith opened a slip that was clearly NOT his size or Granny or I opened a tie.  Even when a tie was opened by a female that we knew the gift wasn't intended for, we still had the interesting part of the new tradition of finding the giver of the gift and verifying if it was for Daddy or Granddaddy.  Only Lynda was safe because no one else wore size 4 Toddler clothes and most toys seemed to be for her since the rest of us were much older than four.  I don't remember much about what we all got that year but I do remember that we laughed more that Christmas than any before or after that year.  Lynda was oblivious to all of the confusion that her simple act of taking the tags off the presents had caused.  She just knew that the tags were as much fun as the gifts and the boxes and paper were best of all!

It took longer to open gifts that year.  The following year, we taped the tags on with lots and lots of tape and I began a tradition of putting a number on each box with a list of names corresponding with the numbered boxes "just in case".  LOL  None of us would have had that Christmas replaced with a traditional one where each box had a tag telling us who the package was for and who it was from.  It was too much fun to see if you could remember what your gifts looked like and who you bought them for.  If you were wrong then the fun began.  Lynda didn't sit still while we did all of this, of course.  So we took turns passing out gifts, guessing who the gifts were for then exchanging the gifts with the person that they were actually intended for AND trying to keep Lynda within view and snapping an occasional picture when possible.  Holidays were always the most difficult and exhausting for us as parents of a child with autism but we were young and had lots of energy.

That was almost 40 years ago.  I'm the only one from that Christmas remaining here on earth.  Everyone else....Larry's parents, Larry's Aunt Lib, Larry and Lynda are all together now in Paradise and I wouldn't be surprised if one afternoon they get around to talking about the Christmas that we played "Present, present....who bought the present and who is it for?"

DA!!

If you don't know Lynda, you may think that this is just one of those pictures that we just weren't able to snap while she was smiling.  Actually, no.  This IS the look we were going for.  It has been said that a picture is worth a thousand words....well, Lynda didn't have a thousand words.  She did have ONE word and a sound that accompanied it that was her multi-purpose "bad" word.  If she had to wait too long for anything....you heard the word and the sound.  If she was given something she didn't like to eat or drink...there's that word again with it's sound effect.  Put her hair in pig tails and you get THE word and it's sound...along with this LOOK ON HER FACE that is certainly the picture that is worth a thousand words!

Lynda's multi-purpose "bad" word was "DA" (short a) followed by the sound that you make when you put your tongue out and blow air or put your lips together and blow air through them.  Now practice the two together.  "DA"--blow air through your lips while they are together.  Do the two quickly in succession.  Repeat for effect.  Now, do these two sounds while you throw yourself to the floor if you're really opposed to what is being proposed.  If you are just mad because some one has suggested that you might put a toy down and do something else....say "DA", add blowing sound, and throw toy on to hardwood floors.  For picture days at school if the photographer takes longer than 10 seconds to get the shot, say "DA", follow with the sound and a little spit if possible and then slump down in your chair and pull on your clothes.  Translated this means, "You had 10 seconds to get the shot and you blew it so now do not think for one minute I'm going to give you another chance."

The word/sound effect works equally well when you decide you've had enough of (well,anything...) say the word/sound and repeat for emphasis.  Now while someone is holding your hand, just melt into a puddle on the floor.  For the best effect, this is best performed in the middle of a large department store.  Continue the word/sound effect while the by-standers stop and stare.  They will have no idea that you have a disability called autism because no one has heard of it in the 70's and even today in 2013, people seem to think that staring at a child with autism is somehow helpful.  This is THE time to provide another loud "DA" followed by the best sound effect WITH spit you can produce aimed straight for the know-it- all-person who is telling your mom what she should do although she has never even heard of autism. 

"DA"/splat is a multi-purpose word to just let anyone know that you are not happy with something.  It must be said with a disgusted look on your face and can be repeated as often as you find it necessary to get your point across.  Who says a child who is virtually non-verbal can't communicate?  It is easily translated into any language!

Never a Dull Moment

If you've been following Lynda's blog you've read that as her mother my goal was never to stay ahead of her but my goal instead was to just be a few steps behind.  Some days I felt somewhat successful. Those were the times I would let my guard down thinking that just because I was taller I was in charge.

Lynda did nothing maliciously.  She simply explored her world without inhibition or fear.  And that's where the education of Kathy began and never ended.  I had little knowledge of typical development of a three year old (being an only child myself) so I have to admit it didn't really occur to me that a lot of Lynda's behaviors weren't typical and she didn't give me a lot of time to investigate.  There was no internet or google in 1975 and I had to research the old fashioned way by going to the libraries and digging through the stacks for information.  Besides, the kind of things we were dealing with didn't give us much time to collaborate or even sleep.

The first thing that we learned was that Lynda was like Houdini.  She could get in or out of anything. Of course we didn't know this at the beginning.  Big advantage for Lynda's team. LOL  For instance, Lynda had a small trampoline in her room.  It was basically an inter tube with a canvas cover stretched over it.  On the bottom side, there was a hole about the size of a saucer that allowed you to access the stem to put more air in the tire.

One day while Lynda was playing in her room, I peeped in and heard her sounds but couldn't see her.  I was standing at the door.  I was hearing her voice but she wasn't there.  I hadn't been Lynda's mother for very long and this child was freaking me out.  I began walking around her room.  Now you have to get the mental picture of this.  I am walking around a room with toys all over the floor. No furniture.  Just a playroom and I can hear her voice but she's not there.  I look at the trampoline and then I move on.  Then I walk back to the trampoline and turn it over and it giggles.  Somehow this tiny little Houdini has managed to squeeze her body through a hole about the size of a saucer tearing it just a few inches.  She's inside it and unafraid and rather enjoying the way her sounds echo inside the inter tube.

I honestly don't remember how I got her out.  I'm guessing I just cut the cover off instead of taking time to deflate the inter tube.  I don't know.  I just know she could get in or out of anything.  It was just a matter of time.

Brewton Blueberries

After I moved to Brewton, I met some wonderful friends.  One was a friend I went to church with and who had also adopted a child.  Jenny was adopted from South Korea.  Lorena and I also shared a passion for girl scouts and we both had girl scout troops.  We had coffee together every morning and Lynda played happily in what I called "her really nice back yard".

When she said she was going blueberry picking, I wanted to go along.  I had never picked blueberries or even seen blueberries growing.  I was naive, so naive.  We took Lynda and Jenny.  It was hot but Lynda didn't care.  She was used to playing outside in the heat.  We left her and all of her toys in the car with all of the windows rolled down and we weren't further than 10 - 15 feet away from her.  Going blueberry picking was one of the worst decisions I'd ever made.  Letting Lynda play in the car instead of the blueberry bushes was the best one.

Lorena didn't mention the fact that we would have more chiggers than blueberries when we were finished.  I have never had more in my life.  My legs were covered in red spots and for all my trouble I had one bucket of blueberries.  I had a short career as a blueberry picker deciding that buying them already picked was definitely worth the money.

When Lynda and I got home, I put the bucket of blueberries on the top of a kitchen cabinet and went back to the back of the house to wash my legs off and find something for the itch.  When I came back to the kitchen, there sat Lynda and the blueberries.  She had the bucket sitting on the floor and had made a line of blueberries---one at a time all across the kitchen floor.  Some had met an untimely demise as she moved from one spot to the other but most of them were intact. A few had made it into her mouth because there were some blue tale tell signs.

 She was so pleased with her new toy.  I had planned to make a blueberry cobbler but Lynda had different plans.  I wish I'd taken a picture of her blueberry masterpiece but I didn't.  You can probably understand why I don't have a lot of pictures of Lynda from "back in the day".  She moved too fast.  Film was too slow.  I was too tired and if I didn't get that shot, there would always be another similar incident the next day.

On Angel Wings

We have designed the art work for Lynda's headstone and the high school art teacher at North Pontotoc who also works for the monument company in Pontotoc will turn our idea into a drawing and then a color etching on the stone.  I have to say seeing the mock up of her name, birthday and date of death just about did me in and that was just on a piece of paper.  It should be ready by the first week in November.

I found these angel wings that looked a lot like a necklace I'm having made by someone on Etsy.  It has silver angel wings and a hand stamped disc that says My Lynda Flies With Angels and has her birthstone (sapphire) hanging also.  There is another necklace that is the same but says Carried to Heaven on Angel Wings.  I haven't decided really on which one I want.  The piece we're creating at the grave is going to be similar as soon as we can figure out what material with withstand the elements and can be hand stamped with one of the sayings above. One hook will hold a basket of flowers and the other one a little wind chime (yet to be made) that makes a tiny tinkling sound.  The pinwheel that was in Lynda's room at NMRC for years and years will eventually come down.  I suspect it will only happen when the sun has bleached it to white.  It has one broken blade from earlier encounters with the one whose grave it marks.  That just makes it even more special to me.