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August 19, 2008, 9:35 pm PDT
Alex's Mom
As mother to a child with multiple disabilities who's 'been there, done that', I can definitely relate to everything Cyndi is going through. And until a person has actually parented a child with disabilities, they shouldn't judge someone who does, no matter how terrible the 'someone' seems.
My son has Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, an umbrella term for behavioral disorders, including Autism), Refractory Seizure Disorder (a progressive, severe type of Epilepsy), Oppositional Defiant Disorder (ODD), Obsessive-Compulsive Disorder (OCD), and Personality Change due to Seizure Disorder. Over the past 13 years, his overall IQ has dropped 30 points, which his doctors blame on the unknown, underlying cause of his seizure disorder and the unrelenting, uncontrolled seizures and the brain damage they've caused. Needless to say, he's not to blame for any of it, but he does still have to learn to live in the same world as the rest of us, whether it's at home or in an institution. My choice for him is at home, if at all possible.
Between the ages of 3-9, his behavior was horribly unsafe. Typical everyday occurrences included hurting himself and those around him, screaming, crying, inappropriate uncontrollable laughing fits (for instance, when his sister cried because he hit her in the face with a toy truck, or when he was spanked), door-slamming, jumping on moving vehicles in parking lots, climbing on top of our house, sneaking out in the middle of the night while I slept, the list goes on and on. The worst things: stabbing his sister in the arm with a fork at the dinner table, putting our kittens in the microwave, throwing chairs at me, swinging a baseball bat at strangers during his sister's softball practice, hitting his own head on the table or wall when he was mad, etc. I made him sleep in my room at night to keep an eye on him after I'd caught him in the backyard alone, at 3 am (age 5). I had to put a lock on my daughter's door to make her feel safe, and couldn't blame her one bit. She was 3 yrs. older, but she was scared of her little brother, for good reason. One night I found him in her room, just watching her sleep. I never told her about that, just put the lock on her door the next day.
I did have some help: we had a good pediatric psychiatrist and a therapist who both specialized in kids with his type of disabilities. I had home health care to come in and stay with him after school til I got off work. I lost more than one nurse aide who quit because she was scared of him, and admitted it to me. The school finally asked me to pick him up at 9am, because they couldn't handle him longer than 1 hr. per day. There were several emergency admits to the local rehab hospital, which was 50 miles away. It didn't help, except to give me and my daughter a respite for a few days.
Even through all that, when everyone else - family included-wanted me to give up on him and "put him away", I couldn't do it. Insitutions were cold, stark, neglectful and abusive. And I felt like that would mean I was a failure as his mother; I was all he had. Finally, his psychiatrist told me about a rehab hospital for brain-injured children at Austin, TX, and I agreed to try it. It was the absolute hardest thing I'd ever done, to leave my disabled 9-yr. old son alone in a strange place with strangers so far away that I could only visit him every few weeks. I was a divorced mom of two, living on waitress wages and child support in northwestern Arkansas. But I did it, and it was the best possible thing I could've done for my family.
After 4 months of inpatient treatment at the facility, he was discharged home, and I was scared to death that he wasn't ready, and that I wasn't. He emerged a totally different little boy - more like MY little boy that I once knew a very long time ago. He'd learned the difference between safe and unsafe behaviors, and much more than that. Long story short, he is a true, real success story. The horrible behaviors have never returned, he is now 18 and just graduated high school. He still has seizures; he underwent brain surgery one year ago, which helped immensely. He still has to take heavy doses of anti-seizure meds and one behavior med, which mainly helps with his OCD and impulse control.
He is now participating in a sheltered work program for people with disabilities and lives at home, where he wants to live. He's sweet-natured and gentle enough to play with my grandbabies, even. Of course, I remind myself every day that the bad behaviors can return at any time, as is typical of his disorders. But now I know there's something we can do about it. And I know now that I never 'gave up on him', just because I placed him in a long-term inpatient program. It probably saved his life.
And all my 'critics' - ex-husband, mother, family members, friends, etc., agree with me.
I honestly hope that Cyndi takes the help she's been offered for Alex; both for his and her family's sake. they obviously all need it.
thanks,
Scrappymom1
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(Original Air Dare: 03/25/08) Motherhood isn't always about the good times, like baking brownies and having game night with the family. Dr. Phil talks to women who say they can’t cope with their children, and they’re running out of resources. Robyn adopted her 10-year-old daughter, Alyssa, six years ago from the Ukraine and says she actually has thoughts of sending the girl back. Robyn says that Alyssa hasn’t bonded with her and doesn’t know how to love anyone. She says her daughter screams, cries, yells and even threatened to kill herself! Robyn’s husband, Joe, can’t imagine living without his adoptive daughter and intends to stand by his commitment to the child. What's the real reason Robyn never bonded with Alyssa? Then, Cyndi says if she’d known her 12-year-old son, Alex, had autism and Down syndrome, she may not have brought him into the world. She says he hits himself, screams, grunts at the top of his lungs and wears two pairs of diapers at a time because he’s not potty trained. Her husband, Ulis, says he doesn’t find it difficult to care for Alex, but Cyndi says she’s exhausted and overwhelmed. Should the boy be institutionalized? Find out what Dr. Phil thinks. Plus, meet a mom with four kids who’s already left home twice. Now she’s scared she may leave again — this time for good. Talk about the show here.
