Stateline 1205 Master Script

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FOR THOUSANDS OF OKLAHOMA FAMILIES, DAILING LIVING IS A DAILY STRUGGLE.

S205/16:26:40

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LAUREL PUCKETT:  “I GET REAL NERVOUS WHEN I TALK ABOUT IT.  I TRY NOT TO.  BUT I TAKE TRANQUILIZERS DAILY BECAUSE OF IT.”

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THEIR STRUGGLE IS WITH THEIR OWN FAMILY MEMBERS.  CHILDREN AND SIBLINGS DIAGNOSED WITH ONE OR MORE OF SEVERAL DISORDERS KNOWN COLLECTIVELY AS AUTISM.

A BAFFLING ARRAY OF SYMPTOMS RANGE FROM MILD SOCIAL IMPAIRMENT TO VIOLENT OUTBURSTS.  SOME AUTISTIC PEOPLE NEED ASSISTANCE WITH THE MOST BASIC OF DAILY LIVING TASKS.

ON THIS EDITION OF STATELINE, WE MEET THREE OKLAHOMA FAMILIES LIVING WITH THE DISEASE—JUST A FEW OF THE FACES OF AUTISM.

TRT

In Oklahoma City there is a quiet neighborhood lined with ordinary homes.  It’s a peaceful place where the sound of wind in the trees mixes with the laughter of children at play.  The homes here look pretty much the same, but behind one door is a family locked in a daily struggle with a disorder that has pushed their family to the breaking point. Every day, every hour Stephen Puckett and his family deal with the realities of autism.

Mary Ann Puckett 

9:45:51    C0001    S-205

As he started to develop as a young baby I noticed things right off having been a teacher I know a little bit about autism he wasn't making eye contact he wasn't meeting certain developmental stages like rolling over or starting to coo and make noises and try to talk. And he was very slow developing. So I discussed this with his pediatrician one day and I said, do you think he has autism and in the early 80's I give doctors an out because they did not have much training in autism.

Mary Ann Puckett 

9:46:23    C0001    S-205

They did CAT scans EEG, blood tests and different things. Then one month later we met with the doctors to get the result of the test.

Mary Ann Puckett

9:47:00    C0001    S-205

When the walked in the room of course I was very anxious to here what they had found and the doctors just sat quietly turning through the test records one of them finally looked up and he said “We don't know what to tell you. Take him home and love him.”

Mary Ann Puckett

9:47:22    C0001    S-205

And we walked out of that hospital thinking “Now what do we do next?”

Laurel Puckett

16:28:00   C0029   S-205

So the easiest thing to do was to shut the door and let us go home and not sleep, and cry and tear our hair out and have no solution, that was our lives.

Doctors diagnosed Stephen with having Kantar syndrome infantile autism, a very challenging level on the autism spectrum.

Tom Puckett

15:46:14    C0027   S-205

They want to learn, they want to get better. Stephen as a child has asked "What's wrong with me?" And we have told him "Nothing is wrong with you, basically you just have some things you have to work with."

Dr. Chuck Edgington 

13:59:58   C0001    S-101

You know we often in the field will say “If you have seen one child with Autism then you have seen one child with autism.”

There is no exact count of people in Oklahoma diagnosed with autism, but the Oklahoma Department of Education reports there are 2,651 students K through 12 enrolled in special needs programs for autism, and that number does not include adults or the undiagnosed.

Dr. Chuck Edgington 

14:09:12   C0001    S-101

If you look at the incidence studies I think the consensus right now is that the incidence has probably not increased. In other words we are probably not having a true increase in new cases of autism but the proportion in the population is increasing, the prevalence is increasing. Then the question becomes why.

Dr. Chuck

14:09:55   C0001    S-101

Answers to that question I think most people would agree would be.

Dr. Chuck Edgington

14:09:55   C0001    S-101

You have a dramatic increase in awareness in the general public in the medical community.

Dr. Chuck Edgington

14:10:59   C0001    S-101

I see adults who probably if you knew what you were looking for when they were a child you would have said holy cow you have autism.

Dr. Chuck Edgington

13:54:33   C0001    S-101

The Autism spectrum is under a very broad umbrella that is called the pervasive developmental disorders.

The spectrum varies from those people who are completely dependant on others to very high functioning individuals who may not know they have a disorder.

Dr. Chuck Edgington

13:47:30   C0001    S-101

The key diagnostic criteria or the sort of key difficulties that a person with autism would have are the areas of communication in particular social communication.

The other common difficulties associated with autism are an intense focus on a single interest or repetitive behavior.

Dr. Chuck Edgington

13:49:12   C0001    S-101

That can range from a small two or three year old child who all they want to do is line up their cars or spin the wheels on the car. That sort of thing. Up to maybe an adolescent or maybe an adult who all they really care about are baseball statistics or things of that nature.

Dr. Chuck Edgington

13:46:09   C0001    S-101

But then you have others that are what we call more high functioning children with autism who may not get a diagnosis until seventeen or eighteen or even later than that.

Many people with autism find their senses are “stuck on high.” Their brains are flooded with incoming sounds and light.  For some even the slightest touch can feel like sandpaper against the skin.

Mary Ann Puckett

10:23:43    C0002    S-205

When you see the typical example of a very severely autistic child in a corner maybe in a rocking position you know holding their ears. What they are trying to do is cut out the outside stimulation which is overwhelming to them.

Researchers believe some aspects of autism are genetic with multiple genes responsible for disorders along the spectrum.

Dr. Chuck Edgington

14:26:34   C0001    S-101

Right now we are really not at the place scientifically where we can say “O-K this is definitely the cause.”

Dr. Chuck Edgington

14:26:49   C0001    S-101

Most of the cases even if you send the child to genetics for instance the answer coming back from that genetic screen will be, “We wish we knew.”

Mary Ann Puckett

10:48:05    C0002    S-205

Steven the last few weeks he goes into unusual sleep patterns he was up at 3:30 yesterday morning. And you just have to adapt to it. If he wants to get up and he is running the vacuum at 3:30 then that is the way it is.

Tom Puckett

16:02:05    C0027   S-205

So as a result our day has begun. Usually I get up with him. He likes to have breakfast and he has a menu that he is ordering from and you had better stay with it.

Mary Ann Puckett II

7:10:58    C0006     S-104

Stephen loves cinnamon toast and eggs for breakfast. It’s one of his favorites.

I want some egg nog. It's almost that season isn't it?

Here you are Stephen; I'll get you a napkin.

Mary Ann Puckett II

7:13:16    C0006     S-104  

I need to change my clothes. O-K we will as soon as you finish eating. Scoot forward up to the table.

We'll get your meds and everything and get you changed.

Mary Ann Puckett 

10:29:27    C0002    S-205

One of the things we start off in the mornings with his chart that explains to Steven what his day will be. It is a picture exchange communication system.

Mary Ann Puckett II

7:37:03    C0006     S-104

OK what's today Stephen? Wednesday. No yesterday was Monday so today is...? Wednesday. No look at the calendar, after Monday comes...? Friday. No, starts with a "T" Tuesday. Exactly.

So what goes on the first place there, you're at home.

Mary Ann Puckett II

7:37:53    C0006     S-104

Where do you go? You go from here to work, and then what happens? Who picks you up? Who picks you up? Acheal, O-K.

Mary Ann Puckett II

7:15:02    C0010     S-104

He has quite an array of medications every morning and night, and he's very good about taking them.

Mary Ann Puckett II

7:16:05   C0011     S-104

He's on 12...17 in the morning, individual pills. He's on 12 prescribed medications and some are multiple, so 17 I guess.

Mary Ann Puckett II 

7:17:53   C0014     S-104

O-K, pill time, Stephen is very good at taking his meds, he knows they help him.

Mary Ann  

7:19:26   C0014   S-104

Don't gulp, small sips, small sips.

For Stephen, success is measured in moments, and  every normal day is a victory.

Mary Ann Puckett II

7:51:25   C0031   S-104

Stephen had a few words he picked up like "Arrow" and "Monkey." And we had a dog at that time and when I would let the dog out he would say the small sentence of "Dog go out." And then at around age two he totally stopped speaking.

Mary Ann Puckett II

7:51:43   C0031   S-104

And that's pretty common with a lot of these children. They'll start to develop language and then it stops. But the language he had at that point was very repetitive, and it’s indicative many types of brain disorders.

Mary Ann Puckett II

7:52:01   C0031   S-104

And then when he stopped talking completely he was six years old before he ever spoke again, and said "Momma."

After four years of speech therapy and many tests, Stephen's allergist did a test on his amino acid levels, showing he was almost void of crucial amino acids. They started giving him daily supplements of B-6 and Magnesium.

Mary Ann Puckett II

7:53:05   C0031   S-104

In about 6 weeks of supplementation that Stephen walked in one morning, I was in the bathroom brushing my teeth and he just walked up to the door and he said "Momma." And I said after crying tears of joy I got on the phone and I called the doctor and I said "You need the Nobel prize for medicine."

Mary Ann Puckett II

7:54:45   C0031   S-104

You don't want to give up hope on these kids because they can make progress.

Mary Ann Puckett II

8:19:11    C0042   S-104

Kula will be picking you up today darling, OK? OK, bye. You have a wonderful day, love you.

Mary Ann Puckett

10:28:04    C0002    S-205

Well Steven now that he is out of high school he attends a sheltered work shop Dale Rogers center here in Oklahoma City. It is a wonderful facility it was set up many years ago by Roy Rogers and Dale Evans, and the people there are just wonderful to him he goes in each morning at 8:30 and he has a job.

About 125 people a day work at Dale Rogers. The center bids for contracts from local companies and provides jobs at every skill level.

Jennifer Upshaw

8:51:24   C0069    S-104

We do the sorting hangers for a company, a dry cleaning company sorting small to large, getting rid of the trash and getting them ready to be reused.

Mary Ann Puckett

10:28:48    C0002    S-205

Every two weeks he gets a check it gives him a sense of pride he comes in and says I have a check, I have a job.

Jennifer Upshaw

8:52:57   C0069    S-104

You should be here on payday, everybody is so proud to show off their paycheck, very excited. But also a reason to get up in the morning just like you and I.

Mary Ann Puckett

10:28:48    C0002    S-205

And he also has the opportunity to socialize there. And make friends with other people. So that is a real advantage for him and that is Monday through Friday. Then at 2:30 the he has his ADHS a person from DHS picks him up. And they will take him into the community. He likes to go and of course look at Vacuum cleaners, and they will stop for food that is another big issue.

Mary Ann Puckett

10:29:27    C0002    S-205  

He has to have his snacks. Then they bring him to the house where he has his computer activities in his room.

Mary Ann Puckett II

7:10:20    C0006     S-104

Who do you have, what video do you have going in your room right now? George Straight. Oh my, surprise, surprise.

Tom Puckett

15:55:15    C0027   S-205

He loves George Straight. He loves vacuum cleaners. It is funny a lot of kids in the Autism spectrum have different focal points. We know one parent that has a child that loves cascade brand dish washing soap. So every time they go to the store they have got to get cascade.

Laurel Puckett

16:46:06    C0002     S-104

He’s funny...he's stubborn. He has a good heart, it's his, his brain is handicapped, not his heart.

Mary Ann Puckett

9:54:00    C0001    S-205

My daughter came home as a newborn and would be awakened nightly by Stephens crying and tantrums. As a toddler she would get out of bed and walk into the room where we had to hold Stephen down to keep him from injuring himself. She would cry and she would say mother is he going to be ok? I would say honey it is all right. So I would consol her, my husband would handle Steven But it was a nightly thing.

Laurel Puckett

16:24:13   C0029   S-205

For years this was normal. And then I guess when I got older he started getting more aggressive because he was able to fight more. He could go after you. So I was his target of aggression so I ended up eating most of my meals in my room with the door locked.

Laurel Puckett

16:25:34   C0029   S-205

I would be in their trying to study or eat and he would just be banging on the door like slam, slam, slam, trying to claw his way through to get me. My parents would try to get him. When he was twelve it took six full grown firemen to get him down on the ground to give him a shot.

Laurel Puckett

16:26:40   C0029   S-205

I get real nervous when I talk about it. I try not to but, I take tranquilizers daily because of it. But he has he is wonderful I do love him. It is just that there are parts of it that society doesn't see and there is no help with.

Evidence of the aggressive behavior can be seen in the broken windows and holes punched in the living room wall.

Mary Ann Puckett

10:39:03    C0002    S-205

I speak on facebook with many in the Autism community and there are reports of people killing their children because they cannot cope any longer.

Mary Ann Puckett

10:54:28    C0002    S-205

Now as adults the sibling rivalry has died down a bit. They are much closer actually now that laurel is married and not living in the home. He is always asking is she coming over? Can I see her? I am very glad that she will be there to over see when we are not there to take care of him.

Stephen’s story is very familiar to Jodesi Eaves. Her brother Jeremy has autism.

Jodesi Eaves 

17:30:32   C0019    S-403

Jeremy is. He is mostly in his own world. You know he does what he wants.

Jodesi Eaves 

17:30:58   C0019    S-403

He is sweet to me. He tries to demand things. He tries to be the boss and tell you what to do. He tries to eat my food

Jodesi Eaves

17:31:24   C0019    S-403

When he stopped talking it was hard for him to communicate. It was hard for me like what do you want? He couldn't tell me. So that was kind of hard.

Trina Eves

16:07:46    C0017    S-403

It began, Jeremy was developing typically and around about seventeen to eighteen months. He started decreasing as far as language, he had language he was walking he was potty trained. Or pretty well on his way to being potty trained. So he was developing typically. But within a week or two his speech was gone. He lost his potty training. It was like he was looking through you. It was like we just lost him.

The Eves were skeptical at first when doctors suggested Jeremy had autism and refused to put him on anti psychotic medication. They looked for other treatments to combat his intense meltdowns.

Jodesi Eaves

17:34:50   C0019    S-403

It is bad he will start slapping his ears. Pulling his hair pulling anybody else’s hair. Pinching you trying to bite you. Trying to put you in a choke hold sometimes

Trina Eves

16:33:54    C0017    S-403

He would be biting on the couch and eat the couch. Biting on table chairs. He would just eat and bite every thing he could think of.

Trina Eves

16:34:46    C0017    S-403

He would through tantrums he would rage from the time he woke up until the time he went to bed.

Trina Eves

16:27:19    C0017    S-403

You can try to explain it but it is hard for people to even grasp. What you are seeing or what you go through.

After a long search the Eves found a combination of medication and therapy that gave them their son back.

Trina Eves

16:49:28    C0017    S-403

And with Jeremy his break through was me having to do ABA therapy. So I got the book and I started reading and getting all of the papers and the tools.

Trina Eves

16:50:25    C0017    S-403

So I started seeing that he could get this. So that is when he started saying words. Through me teaching him a repetitive way of saying it, or asking for things, or just a repetitive way of communicating, and I would do it and it was trail and error, so over and over and over again.

Trina Eves

16:50:57    C0017    S-403

And he started learning words. He started doing work and I taught him how to spell his name and he knew how to spell all of our names. The school did not know this. This went on for six months and they had no clue that he could even speak. And I was just at the school and I was sitting on the floor. They were like “Oh my gosh, this little stinker can actually speak.”

Add to the trauma the cost of treatments that are in most cases needed for a lifetime. Without public assistance it can bankrupt a middle class family.

Trina Eves

16:20:19    C0017    S-403

Last year we spent $62,000 on Jeremy by his self and that doesn't include clothes and special toys. That is therapy and food and medicine. His medicine is like 1300-dollars a month.

Mary Ann Puckett

10:01:59    C0001    S-205

My son he is on 12 prescribed medications. And years ago we tried to make it on our own paying for everything out of pocket but when he got up to as many medicines as he is on today it can run up to 4,000 dollars a month.

Mary Ann Puckett

10:05:49    C0001    S-205

It's... I read a statistic the other day they said in the life time of a person with Autism, I think Harvard did this study; they said the cost is 3.2 million dollars for all of the medical and living expenses with a person with Autism.

The situation is more challenging than that faced by the typical family. Putting intense pressure on parents and their marriage.

Trina Eves

16:21:11    C0017    S-403

The divorce rate in parents who have children with Autism is very. I mean it is in the 90%.

Mary Ann Puckett

9:51:27    C0001    S-205

I go to national conferences and local conferences. These mothers many times are singles moms.

Mary Ann Puckett

9:51:37    C0001    S-205

Fortunately my husband has stayed with me and helped me through this and we worked together. But those mothers who are dealing with it by themselves it is just unbearable for them. And they are trying to work during the day. Come home at night deal with their child who might. Many times these children have sleeping issues.

Laurel Puckett

16:29:15   C0029   S-205

My parents slept in shifts for a good part of a decade. Because he would stay up every night, every night, screaming, fighting, screaming, fighting.

Some have begun to suspect standard childhood vaccinations as a factor in some autism cases. After watching their child deteriorate within days of being vaccinated many parents are adamant that something in the immunizations are responsible for what happened.

Trina Eves

17:09:58    C0018    S-403

With him losing it at 17 months automatically we thought that maybe the shots had something to do with it.

Parents point to the mercury added to most batches of vaccine given to children in the U-S.

Mary Ann Puckett

10:14:06    C0002    S-205

You know I have never been able to comprehend how they could justify putting mercury in a vaccine. That was done specifically as a preservative to help the pharmaceutical companies so that they could improve the shelf life of the vaccine. And mercury for example if you have a spill of it in your neighborhood they bring in hazmat and evacuate the neighborhood. And I have always thought how can they justify putting that in a babies arm?

Most doctors maintain autism is so varied and complex there must be multiple causes, genetic and environmental triggers that prevent the body from processing the immunization and basic nutrients in food.

Dr. Chuck Edgington

14:17:32   C0001    S-101

There hasn't been a single well conducted international study that has not concluded that the vaccines are not responsible. I mean all of the studies. Again at international levels.

Trina Eves

17:11:25    C0018    S-403

We do suspect that he was born susceptible to some types of chemicals. It could be environment it could be in the food. It is not him being born with autism, that is just not true.

Megan Decocq is on the high functioning end of the autism spectrum. She is one of millions of people, adults and children whos only outward sign of the disorder are social and communication problems.

Angela Decocq

15:07:52   C0006   S-206

She's 16, she's a normal teenager. She's a very sweet young lady, she's artistic, very artistic...bright, she's a bright girl.

Angela

15:08:17   C0006   S-206

And she was diagnosed with asberger's in the third grade.

Angela Decocq

15:23:23   C0007   S-206

Sometimes kids at school would try to shy away from her because she would be just in their face just right on them, touching, touching, touching. And some kids, you know, just don't like that.

Angela

15:23:40   C0007   S-206

She didn't understand that, she didn't understand space.

The high functioning end of the spectrum includes a disorder called Asberger’s syndrome. Like many with Asberger’s, Megan is very sensitive to light and sound and experiences the world differently.

Megan Decocq

16:19:59   C0005   S-303

I am very visual with my thoughts. My teacher she reads out loud in class and stuff like that and will do stories. It feels like a movie. That is why I read a lot.

Megan Decocq

16:21:17   C0005   S-303

I draw little cartoon characters about me and my friends.

Megan Decocq

16:20:33   C0005   S-303

No painting I don't like painting. I like to draw though. Not too much with painting it is too messy.

Angela Decocq

15:13:39   C0006   S-206

Then she had a teacher that was familiar with asberger's. And she had a councilor also that was familiar with it. They didn't say anything to me about it. They just said we think we know what the problem is, we want to get her tested and she didn't actually get tested till third grade.

Angela Decocq

15:28:41   C0007   S-206

She came home one day / and she was just so upset because she couldn't figure out why she was so different.

Megan Decocq

16:16:17   C0005   S-303  

She said because you have Asperger's and ADD. I was like “I do?” She said Yeah. I was like “I never knew that, why didn't you tell me?” She was like “I thought you knew.”

A question that weighs heavily on parents minds is what will happen to my child when I am not around to take care of them?  Siblings are often told the responsibility will be theirs someday.

Laurel Puckett

16:45:20    C0002     S-104

I want to make sure that I have control over what happens with him, you know, I'm not just going to hand him over to somebody.

Jodesi Eaves

17:33:22   C0019    S-403

You know but I will be there to take care of him later. I could see myself doing it because I do love him.

Progress is being made, research continues as does the struggle by parents to get their child the help they need.

Trina Eves

17:12:05    C0018    S-403

If our kiddos don't get the therapies they need now we are going to have adults that have severe issues. Then that is when everybody is going to come out of their pocket.

Mary Ann Puckett

10:41:22    C0002    S-205

I have gone out personally to the Legislators and given copies of my book. I have given them letters explaining this. And the funding there is just not money there. I don't know where it is going to come from or how we are going to get it, but the population is growing and we can't continue to have blinders on and act like it is going to go away, because it is not.

Chuck Edgington

14:54:52    S-101    Dr.

How do we cure it? Can we cure it? Frankly there are people who would say...people with autism who would say "Why would you want to cure me? I'm not broken." In fact some would say "There are parts of this autistic mind that I would never give up."

Laurel Puckett

16:37:07    C0029     S-205

We need people who specialize in autism; we don't need padded rooms to put them in. We need places for them to go be with others. Steven likes having friends, he likes going to Dale Rogers. Don't just lock them away, they need places where they can go and thrive.

TRT

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THE CAUSE OF AUTISM IS THE SUBJECT OF VIGOROUS DEBATE.  SOME RESEARCH SUGGESTS ENVIRONMENTAL FACTORS DURING PREGNANCY MIGHT INCREASE RISKS.  ONE RECENT STUDY SUGGESTED WOMEN WHO LIVED WITHIN A THOUSAND FEET OF A FREEWAY WHILE PREGNANT WERE 86 PERCENT MORE LIKELY TO HAVE AUTISTIC CHILDREN THAN THOSE WHO LIVED FATHER AWAY.

IT’S LIKELY THAT THERE MAY BE MANY FACTORS WHICH CAUSE THE MANY FACES OF AUTISM.

TRT