The Autism News | English

Motherhood is not always a fun and rewarding experience. Dr. Phil talks to women who say they can’t cope with their children, and they’re running out of resources.

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Part 2:

By Dr. Phil

“I am so tired of being a mom. I wouldn’t wish this life on my worst enemy,” laments Cyndi. Her son, Alex, suffers from Down syndrome and severe autism.

“Rain Man is higher functioning than my son,” says Cyndi’s husband, Ulis, referring to the movie in which Dustin Hoffman played an autistic man.

Alex is not potty trained at 12 and has to wear two diapers at the same time. “He will spread feces all over his body. He once broke his own nose because he had a sinus infection. Because he’s non-verbal, he couldn’t talk and tell me he was hurting,” Cyndi says. “At 96 pounds, I can’t lift him up anymore. I am physically becoming disabled myself. No one should have to live like this. I told my husband, ‘We’re going to have to try to find a facility that takes kids or adults with severe mental disabilities.’”

“My wife and I argue about Alex every day. I would never allow my wife to place Alex in a special home,” Ulis declares. I would like Alex to live with me forever. Life is not a card game. When you’re dealt a hand, you can’t just fold it and say, ‘I quit.’”

“He has the hope that someday it’s just going to get better, and I have the realization that unless I get help for him now, it’s not going to get any better,” Cyndi says. “I’ve been living in an nightmare for the past 12 years. I can’t do it one more day.”

When the videotape ends, Cyndi blinks back tears.

“Difficult to watch, but that’s your day,” Dr. Phil says sympathetically.

“I am physically and emotionally just drained. I don’t know some days how I’m going to get him out of this room and get him to school,” she says.

Dr. Phil turns to Ulis. “Are you aware that she is so at the end of her rope?” he asks.

“Yes.”

“What do you think needs to happen here?” Dr. Phil asks.

“I need someone who can help me with him, help me train him to listen to me when I tell him, ‘It’s time to get up and go to school, and it’s time to brush your teeth,’” Cyndi replies. “Having Alex is like having a baby for the rest of your life. It’s not getting better because he’s getting bigger and stronger. My husband hurt his back, actually, carrying Alex up the stairs.”

“Because he weighs, like, 100 pounds, right? Almost, but is functioning at an infant level, so you have to physically help him move,” Dr. Phil observes.

“Correct. And he can walk up the stairs. He can do it, but he chooses not to. There have been times I’ve had to almost drag him up the stairs. I’m up until 2:00 or 3:00 in the morning, and then having to get up and go to a job,” she replies.

“You heard me speaking earlier to [the previous guest] Robyn about the emotions of this situation, and your emotions are in a tailspin as well, right?” Dr. Phil asks Cyndi.

She agrees. “When I see other families out, and their children are running and playing and interacting, I think, ‘Why couldn’t that have happened to me?’ I asked my doctor with each of my children to let me know if anything was going to be wrong, because I knew as a young person that I couldn’t deal with a child like this. And this is my worst nightmare because not only does he have Down syndrome, but he has autism. That was very hard,” she says. “After he was born, I started thinking, ‘We can work through this. We can make it work.’ Then when the autism set in it just got to be too much.”

“Has it gotten to the point that now your emotionality isn’t really helping?”

“Probably,” she responds.

“He can walk, but he doesn’t. Even though he suffers from Down syndrome and autism, there are communication levels that can be reached, but you understand that the manner in which y’all are engaging him is contributing to the difficulties as well,” Dr. Phil says. He points out that Alex is able to communicate to some degree because he was heard on the videotape calling his mother “mean!”

“Is it possible that you guys are in over your heads so far that it is unkind to Alex to keep him in that situation? Have you considered whether or not he might be happier, he might be better, if he were institutionalized in a facility that could care for him, either temporarily or longitudinally?” Dr. Phil asks Cyndi and Ulis. “Have you considered that?”

“Every day, but he can’t tell me that he’d prefer to be in a place like that. He can’t tell me what he would not prefer,” Ulis replies. “He can’t tell me what somebody would do to him, or what they’re doing to him, or what he likes or doesn’t like. That would be my major concern.”

“You said, looking at it from Alex’s point of view, how would you like, all of a sudden, to not be able to go to bed in your own bed, in your own house, in your own home? With his limited understanding, all of a sudden, he’s just somewhere else. That’s just more than you can even conceive, to endure emotionally, to do to him,” Dr. Phil notes.

“Right. He can’t tell you, ‘I don’t like it here,’” Ulis replies, voice breaking.

“That’s my biggest fear because it’s always all over TV about children being abused. This kid can’t say, ‘Mom, somebody touched me in the wrong place. Somebody hurt me,’” Cyndi says, tearfully. “He can’t say, ‘My head hurts. I’m sick in my stomach.’”

“As hard as it might be on you, if there was a quality alternative, if there was something that could help him get to a better level of health, you would have to consider that,” Dr. Phil says.

Dr. Phil introduces Dr. Doreen Granpeesheh, who sits on the board of the Autism Society of American. “Now that you’ve seen some of the video and all, and you’ve been through the medical records as well, there are some health issues going on here,” Dr. Phil says.

“I can’t even count the number of times in his life that he’s been on antibiotics,” she replies.

“The problem with the antibiotics is you’ve got to give them when he has a problem, but you can take them so much, that they compromise your ability for your body to function properly,” Dr. Phil adds.

“Typically, when you take that level of antibiotics as a young child, you start to destroy all of the healthy bacteria as well,” Dr. Granpeesheh explains. “None of this is being treated because, unfortunately, what we see with kids with Downs, and particularly with autism, is that we focus more on the external symptoms and we don’t really focus on any of the medical symptoms, which are also causing some of these behaviors.”

“You heard me talking earlier about the behavioral management that needs to go on here. That’s not happening in this situation, but might happen in an institutional environment to raise his level of functioning through behavioral management, correct?”

“With Alex, it’s gotten to the point where it’s so severe, that he would probably have to start out with a short-term inpatient facility, and then gradually mainstream back into the home and school setting,” Dr. Granpeesheh says.

The Kennedy-Krieger Institute in Baltimore, Maryland is the leading hospital in the country that specializes in research and treatment for pediatric development disabilities, including Down syndrome and autism. “We asked them if they would provide a doctor to begin talking to you guys about what’s going on, about what the options are, about what the courses of treatment would be. They’ve agreed to make one of their top doctors available,” Dr. Phil says. “We can begin to try to marshal some resources to help in this situation.”

“That would be wonderful,” Cyndi says.

“At this point, you’re in over your head, and you need some reinforcements,” Dr. Phil tells her. “This can get better. It’s not about dumping him in some cold, stark institution. It’s about having an integrated plan to get him moving in the right direction as best we can.”

Source: YouTube

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