winning-experience.pngThank you to K.S. for his submission. This thoughtful and heart-breaking submission of a parent’s love and what they must sometimes do to help their child has been chosen as the first winner in the “From My Experience” Contest. Another contest starts February 21, 2008, so please submit your experience and maybe you’ll be our next winner.

This is the true story of what I had to do to get my son the help he so desperately needed.

Let’s begin about 20 years ago. 1982 to be exact. My wife Valerie was pregnant with our first (and only) child. She was extremely concerned during the pregnancy, partially because my brother’s baby, who was born just 6 months earlier, was delivered with the umbilical cord wrapped around her neck, and her face was extremely bluish. There was grave concern at that time by everyone about the possibility of brain damage, but I can gladly report that my niece currently is a junior in college and is even the Editor of the school’s newspaper.

My wife took excellent care of herself during the entire pregnancy. She never smoked or drank alcohol to begin with, so these were never issues in the first place. She also avoided all medications. In fact, the only pill which crossed her lips during the entire 9 months was 1 Tylenol. Nevertheless, we still prayed each and every day up to and including the day of delivery that everything would be fine. I guess all expectant parents do that.

We took pre-natal classes, and I had remembered one session in particular, in which the instructor spoke of what is called the “APGAR* Score.”
*Activity (Muscle Tone)
Pulse
Grimace (Reflex)
Appearance (Skin Color)
Respiration

The APGAR is a 2 part evaluation of the baby. The evaluation is done twice, once immediately after birth and again just a few minutes later, and is supposedly a strong indicator as to the overall health of the newborn. The APGAR Score is based on the 5 factors listed above. Each of these factors is given a score of 0, 1, or 2, so the total score could range from 0-10. We were told during the pre-natal class that a score of 6 or higher for the first evaluation and 8 or higher for the second evaluation was usually a good sign of a healthy baby. With this in mind, the minute Kurt Junior entered the outside world I immediately focused on “6 & 8,” “6 & 8.” After a few minutes I asked one of the nurses what the APGAR Scores were. She seemed surprised by my asking, but her reply was music to my ears. “9-10,” she said, “can’t get much better than that.” At that moment, everything was right with the universe, and my world seemed totally secure.

Kurt seemed to be perfect. With a birth weight of 9 pounds, 10-1/2 ounces, he had a head start on most babies. He turned over, crawled and walked much earlier than expected. Everything seemed to be going along just fine.

It was somewhere around his first birthday that we started to think that things just weren’t quite right. It seemed that Kurt wasn’t listening to us, and he was making less and less sounds. Even if we said something like “Kurt, if you come here you can have some ice cream,” (which was his favorite) he failed to respond. Frightful that Kurt had a possible hearing loss, we scheduled a hearing test for him at Lenox Hill Hospital.

The hearing test was a disaster. Kurt would not sit still at all and wouldn’t even let the Audiologist put headphones on him. The most disturbing part, however, was that I could tell immediately from the Audiologist’s facial expressions that he thought there was some other problem. He told us after the aborted test that he didn’t think Kurt had a hearing problem, because although Kurt wouldn’t allow the test to be done he seemed to respond to all the sounds he had heard. He also recommended that we see a Neurologist, but refused to elaborate on a reason why.

When we finally got to see the Neurologist 1 week later, our world started to crumble. He diagnosed Kurt with Mental Retardation. Valerie and I were obviously devastated, but almost immediately turned our attention to getting Kurt whatever help he needed so he could lead as normal and productive a life as possible. After all, Valerie’s brother is Mentally Retarded (The politically correct term today is Developmentally Disabled) and he is living a full life, complete with a full time job as a messenger and a wife. Valerie and I decided to turn our pain, hurt and anger into action. As soon as we could, we got Kurt enrolled in a special education pre-school program, as well as an excellent recreation program on Saturdays.

As Kurt started getting older, however, his behavior changed drastically for the worse. He would become extremely agitated and angry, sometimes for no reason at all, other times if just 1 minor thing was changed. One example was the day we moved some furniture in the living room. When Kurt saw that the furniture was in a different place he got very upset and started to continually bang the table with his fists. When we took Kurt to a Specialist, he diagnosed Kurt with Autism, in addition to the Mental Retardation. The Autism explained why Kurt would get so upset over the slightest of changes.

As time passed, the aggressive behavior kept escalating. Kurt started throwing objects like chairs, and was becoming violent towards himself and us. He also began a pattern of only sleeping 2 or 3 hours a night, every night. Valerie and I actually had to take shifts sleeping because anything could happen when Kurt was awake. One minute he’d be laughing hysterically at nothing at all and the next do a complete 180 and start kicking and biting. It was around this time that a 3rd diagnosis was added to the mix. In addition to everything else, we were now told that Kurt was also Manic-Depressive, or Bi-Polar. This would explain Kurt’s rapid mood swings. The Doctor started Kurt on the medications Elavil and Lithium, and although he was only 6 at the time, when the smaller doses did not seem to have any effect, they were raised to 300mg of Elavil and 400mg of Mellaril. Even at these high doses, we saw not one change in Kurt. The behaviors were exactly the same, and he was still sleeping only 2 to 3 hours every night. The doctor then, over the course of many months, proceeded to try another 6 or so different medications, such as Ritalin and Tegretol, each also having no positive effects at all.

When Kurt was about 7, Valerie and I made the painstaking decision that the best thing we could do for Kurt was to find him a good Group Home, one where he could be monitored much more closely than it was humanly possible for just Valerie and I to, because the ever increasing violence he was exhibiting was becoming far too dangerous for us to handle alone.

We obtained a list of approximately 20 Group Homes and contacted them all. Over the course of the next two years only 6 of them ever responded that they even might have an opening. We visited all 6 of them, some hundreds of miles away and in different states, but not a single one would accept him. The answer we got was usually along the lines of one of these two statements: “Kurt is just too violent and aggressive for our program,” or “We just don’t have the adequate staff to meet Kurt’s special needs.” I would ask these programs if they knew of any others that might accept Kurt, since he was a child who definitely needed a Group Home setting, more so than just about anyone else, but they could not help me.

One visit to a potential Group Home stood out in my mind. This particular Group Home was upstate, about 300 miles away from our house. Needless to say, by the time we got there Kurt was extremely agitated, and proceeded to slap the face of the person interviewing us. So it ended up taking about 5 hours to drive there, 5 minutes to realize that Kurt wouldn’t be accepted, and another 5 hours to drive back home.

By the time Kurt turned 9, his behavior was worse than ever, with no end in sight. It seemed like we were taking him every other week or so to The Children’s Psychiatric Emergency Room.

It was during one of these visits to this E/R that our world would start to change again. Kurt was having a horrible time of it that home at night, knocking over the TV set and a wall unit. When he started to bang his head on purpose against the wall we knew we had to take him in. While there, one of the ER docs motioned me over to him. “Have you thought about placing Kurt in a Group Home,” he asked. “Of course,” I told him, then proceeded to tell him our 2 year saga of trying to place Kurt without any success.

The doctor then brought me to a small room and closed the door behind us. “I want to tell you something, Mr. Sass, but you can never tell anyone that I told you this. Most Group Homes will never take on a child like Kurt, because it comes down to a matter of money, and Kurt requires so much additional attention that it is not cost effective for them to accept him. In other words, most Group Homes only want the kids that don’t really need to be in Group Homes, because they are easier to take care of and require less staff.”

“There is one thing we can do, Mr. Sass, but you have to promise not to tell anyone you heard this from me.” He had my full attention. “The only way a Group Home will accept a child like Kurt would be on an emergency basis. In other words, if Child Welfare felt that he could not under any circumstances remain at home because his life would be in danger. What I can do is refer him overnight to the Bronx Children’s Psychiatric Hospital for evaluation and to put on my report that it is for the child’s safety.”

“What you need to do, Mr. Sass, is to come to the hospital the next day, and then pretend you are the absolute worst parent on the face of the earth. You’ll have to convince Child Welfare that you hate him and that if he is returned home you will harm him. And you’ll have to be very convincing, because if they believe you’re faking, they’ll send him right back to your house. One other thing. Come alone. Don’t bring your wife. If both parents come the odds are much more likely that the child will not be considered in danger. Now remember, Mr. Sass, you did not hear this from me. But you must decide. To be honest with you, this is the only way to get him in a Group Home.”

I discussed this with Valerie and, through tears, we decided to go ahead with it since it was truly our only option.

The next day I went to the Bronx Children’s Psychiatric Hospital, alone, and was led to a room in which there were 4 people; Kurt, a member of the hospital staff and 2 people I believe to be from the Department of Child Welfare. As soon as I spotted them, I went into my performance mode. I yelled at Kurt and called him every name in the book. I had never cursed at Kurt before and felt like the lowest scum on earth in doing so. I called him a “fucking retard” and told him I wish he was never born. I still had no idea if they were buying it, so I proceeded to pick up a chair and throw it past Kurt, but close enough for the others in the room to think he was the intended target. I will never forget the look of fear on Kurt’s face for as long as I live. I still have nightmares about it.

Well, whatever I did, it worked. They refused to let me take Kurt home, and “miraculously” just 2 days later he was placed in a Group Home just 5 minutes from our house, a place we were told many times in the past had no openings.

Was it worth it? Of course, it was. Kurt has flourished in the highly structured Group Home environment.

Although I could never thank the doctor enough for his courage in putting himself at risk to help me out, I to this day find it appalling that I had to stoop to being so cruel to my own son in order to help him.

K.S.

No related experiences.

Tagged with: • • • •

Filed under: Medical Experiences • Parenting Experiences • Sad Experiences • Winning Experiences

Like this post? Subscribe to my RSS feed and get loads more!