Sid: My guest is red hot for the Messiah; if you had had an experience like she had you’d be red hot for the Messiah. Her name is Karen Mayer Cunningham and Karen, when you had little James you were such an excited mother up to fifteen months describe what James was like.
Karen: Oh, he was wonderful, very first child, boy, blond hair blue eyes, he was very big, he was nine six and a half and he just came out perfect. Ten fingers, ten toes, happy, we were so happy to have him and we got him home and of course, he progressed just right on chart like every mother wants their children to do. He rolled over at nine days, he sat up at four and half months, and he was just a picture of health, happy, peaceful, one of those children that would go to anybody and be happy. He walked at nine months, we had every opportunity, we took every single picture we could of him and he was adorable and happy until about fifteen months.
Sid: What happened that caused the change?
Karen: Well, we took him for his regular check-ups like all parents do and then one day all of the sudden he ran to this spot in the hall and he would stand backwards and start to beat his head in the wall. Now I didn’t think that was normal behavior but I didn’t know this was my first child, so I had plenty of woman that came to my salon and said, “Oh, that’s just the terrible twos, that’s what boys do, they’re really rough and they gave me all explanations of why he was doing this. And being a first time mother I was sure that these other woman must have known what they were talking about and nobody seemed to think it was much much to do about anything.
Sid: But things began to get progressively worse.
Karen: Things began to get progressively worse very quickly. When he would hit his head on the sheet rock, it was first just a few times and we would re you know just redirect him. And you know, pat him on the head and send him on his way and tell him to stop doing that; that it was not a good choice. And then before you know it he had actually made a hole in the wall with the back of his head. And from that he started to pick off little pieces of the sheet rock and eat them. I think it is one of those things that when you go through as a parent you don’t really want to share with others the severity of your situation, I don’t know if it’s shame, blame or other peoples condemnation, but you sort of sort of try to joke it off.
Sid: But what did the doctors say about this?
Karen: Um, the doctors, you know I think the doctors see tons of mothers in their pediatric visits who bring them every little situation and the doctors try to settle the mothers and say “Don’t worry about it, it’s just a phase, it’s a season, this will pass, little kids are funny, they’re funny that way, they all do different little things.” And so the doctors who have gone to medical school seem fine about it, and I had eighty clients that came to me every two weeks, they didn’t seem to be upset about it. So surely all this seasoned veteran information around me was much better than my first mother experience. So I assumed that at some point soon this would stop, it was just a phase that he was going through.
Sid: But you actually had him in Special Ed and then one day you were accused of child neglect and the child protective services came to visit you.
Karen: Well, between the fifteen months and he turned three a lot transpired, we had, we had taken him to the doctor and the doctor started to maybe agree that there was a possibility that something might not be right. But I don’t think that any doctor or a pediatric doctor wants to say that once they say something it’s permanent and it’s on your files. So we went to a place called Star Bright Pediatrics’ a wonderful specialty facility in Austin and had him have an intake. And I’ve never been around anybody with Special Ed I just hadn’t been around anybody who had a Special Ed child. I knew some people with handicapped, physically handicapped children but not with emotional or mental needs. And so we took him to Star Bright Pediatrics and I was very happy because I thought these people will tell me what’s wrong and we’ll just fix it. And as we sat there at intake when he was two and a half years old I knew; I knew that this was not good. I think that mother instinctively know that something is really really wrong and we sat there and he sat on a little bay chair and this specialist, this clinician took down information. She gave him a toy and then she would snatch it back from him. Well, he didn’t like that and so then he began to tantrum, but his tantrums weren’t like other two year olds tantrums, they were without a beginning and usually without an end. And he began to sit on the floor and rock and rock and rock until finally he was laying on the floor hitting his head on the floor until she gave the toy back. And then as she did these little things, in my opinion to set him off, which was what she was trying to do, she was trying to see his action and then reaction, she made notes, she made notes, she made notes. She didn’t really talk to us, but I guess that’s her job and at the very end she said, “Well, I can tell you that James is classically autistic.” And the only time that you want to hear classically is when someone is a soloist in orchestra, but you don’t want to hear that about autism. I didn’t know what autism was, but this is what she said to me. “There’s no treatment, there’s no cure, he’ll always have it, he’ll never play with other boys and girls, he’ll always need one on one attention, he probably won’t graduate high school and we’ll send this report to you in the mail in a few days.” “Thanks for coming in.”
Sid: Now, since that time, you’ve found out a great deal about autism. You were telling me one in one hundred and fifty children in America have autism.
Karen: That’s correct and one in ninety-eight of those Sid are males. It’s a very male dominated disorder. Autism is on the spectrum called PED, Pervasive Development Disorder and on that spectrum on the very left side of it the least worse, if that’s a category is a little thing called ADD. And on the very right of that on the very worse of the spectrum is the thing called autism. And so between those two things are the largest issue that this generation possibly the last twenty years has faced with their children.
Sid: And you’re telling me that there’s no cure?
Karen: I’m telling you they said that there is no cure by doctors and that is currently the case, there is no cure, there is no treatment. Part of that is because it is a disorder, it’s not a disease. I have a blue eye, if you cut me open I have a gene for a blue eye. If you have diabetes we can do a like test, a like treatment, it’s inside of you. There’s nothing inside of you autistic, that’s why I said, “Disorder.” And it’s not a disease, its disorder and so that’s what they say, “There is something out of order with your child.” They can assume, they can gather data and look at the general things that happened to him in a set period of time. It could be possibilities why these behaviors exist in your child, but there is no pin point beginning. There is no “You did this and this happened.”
Sid: Okay, so you come to grips, he’s got this problem; it’s not going to get better. There is no cure for it, how did you deal with it?
Karen: Well, I dealt with it the way I’ve always dealt with things in my life, I didn’t believe them. I’ve always been able to control, manipulate, lead, coheres, get my way in life, sort of a strong willed person, strong willed mother. I thought, well that can’t be true, I’ll just figure this out, I’ll look on Oprah, I’ll look on Larry King live; they don’t know what they’re talking about. No hope is not a diagnosis that we have my family; I don’t believe that, I don’t receive that, I don’t participate in that. So I’ll just ask somebody else, now having a wonderful database of clients in my salon, I had wonderful women that came to me and ministered to me literally. And one of my clients told me about this thing called preschool for children that are speech delayed in Texas. And I was very very excited because each time I got some nugget of information or hope I thought, “That this is the one thing that I need, this is the way out of this dark valley.” And so my client told me that in Texas, “That if you’re speech delayed you start Special Ed.” Well, James was a summer baby so in the summer of ’97 we took him for an intake at the school district there in Austin. My husband took him because I was too upset I couldn’t take any more doctors telling me that I had a bad apple. I just couldn’t take it, I couldn’t take it, I couldn’t take it and so my husband took him and then he came back and he said “He was accepted.” And I was like, “That’s great.” So the next month August of ’97 he started his PPCD, his preschool preparation for children with disabilities. Of course I didn’t liken that title was applicable to by son, but if that’s the category that’s fine; we’ll just get him the help he needs and he’ll be just fine. So he went to the school for a thing called an ARD which is an Assessment, Review and Dismissal. And as we sat around this big round table with principals and consultants and occupational therapist and they had a lot of paper work, I felt really pushed up against the wall. I think for mothers when there’s something wrong with your child there’s a lot of shame and blame whether it’s spoken or inferred, or just it’ self set induced. And so they had all this paperwork and I said, “You know, he qualifies he can start in August and he’ll get all his Special Ed and he’ll get help. And I said, “Well, if he behaves badly are you going to kick him out of school?” Because I didn’t know, I knew when I went to school if you behaved badly, if you ate the wall, you’d be kicked out of school. And they just looked at me with their heads turned like, “What are you talking about?” They said, “Of course not! He’s handicapped.” Ah, when they said that it broke my heart, it just broke my heart, because he’s not handicapped he just needs a little help.
Sid: I don’t know about a little help, describe to me graphically exactly what his behavior was like.
Karen: At that point in ’97 he was three years old and a little help yes. He was eating the sheet rock, he ate all the rubber off the back of all of our bathroom mats, he’d eaten the rubber liner out of where your door closes on your car, eaten the entire thing. It looked like somebody had taken a sledge hammer to our walls in our house. And if you were standing up and you had a pair of flip-flops on your feet he might just drop down and start picking pieces of that off. At that point we were buying this roll of rubber product from Pediatrics, Star Bright Pediatrics that we would tie in a knot, it was inperbus rubber and he would chew on it for hours. And so this war zone that we lived in had become our normal.
Sid: He would also get out of your house and wander in your neighborhood.
Karen: Yep, he would just let himself out and run up and down the streets until the neighbors brought him back. He was like a raccoon; he was like a little wild animal in our house. It was…anything could set him off.
Sid: This sounds like more of a diagnosis than handicapped.
Karen: Yes.
Sid: It sounds worse to me.
Karen: It felt worse to me, it felt like living with death, death of dreams, death of hopes for your child, death of possibilities. But I kept hanging on to the next little nugget I got from anybody thinking, This is all we need to turn this train around from going off the cliff.”
Sid Roth: But unfortunately it gets progressive worse. We’ll pick up right here on tomorrow broadcast.
Tags: It's Supernatural, Sid Roth
Tags: It's Supernatural, Sid Roth