When my son had his G-tube stoma re-positioned (the first one was so high that it rubbed against his ribs as the ribs grew, and took 2 years to "prove," by way of scar path), the GI doctor told me there was an outside chance that the second one might puncture the colon. It was an outside chance, but it was possible. He tried to reduce that possibility by having a surgeon perform the PEG (percutaneous endoscopic gastrostomy) procedure. All looked good.
A few weeks later, when the foley catheter (what they put in during the procedure and which stays in the stoma until it's healed well enough) was switched for a MicKey button, it was done simultaneously with a bilateral hip tenotomy, and my son was placed in a cast from the waist to the knees. That procedure was done on a Friday. Because he is medically fragile, he recovered in the PICU.
After a suitable amount of time, they started up the feeds, and my son had really odd diarrhea. It continued, and looked very much like the stuff we were pumping in. It was a big, nasty mess, getting well-integrated into the hip cast. The GI doctor wanted to rule out the "outside chance," and ordered a radiological exam. That was scheduled for Sunday. I went down with my son to radiology, and helped the radiologist (not a technician, but the real thing) perform the procedure. He was so swift, I hardly had the time to look at the image myself. He quickly said the second G-tube was fine.
We went back to PICU and continued to change his diapers every hour. After 3 more days, and a slew of antibiotics, with test results coming back "WNL" (within normal limits), the PICU doctor sent us home, assuming it was a nasty bug picked up from the hospital, from which he would recover best at home. We left continuing to change his diaper every hour.
Two weeks later, my son, having lost weight, was now listless and pale. The GI doctor, thoroughly confused, ordered a lower GI study. Fortunately, we were able to get the best pediatric GI radiologist (since retired, sadly) in the LA area. He found nothing wrong with the lower GI, so he checked the upper GI just in case. And lo and behold, there it was, clearly evident that the G-tube was misplaced. The error was corrected, my son "plumped back up," was less irritable overall, and was hospital-free for an amazing 2 years. The GI doctor apologized to me for the error, but I told him he was not to blame; it was the radiologist who ruled it out. - L.S., Altadena, CA
My "Horror Story" began when my daughter turned 3 and "graduated" from the ECI (Early Childhood Intervention) program in my little town and transitioned into the public school district. My daughter is and has been undiagnosed but is being labeled with cerebral palsy. Panic began after I was introduced to her teacher and the teacher told me that bottles were not allowed in her room. My daughter had low muscle tone in and around her mouth and was having a hard time transitioning to a training cup. I used the 2 months before school started to frantically work with her to get her off the bottle. I did not succeed. I told the diagnostician that I was sorry that I couldn't get her off the bottle, and she said it was no big deal. When I told her what the teacher told me, she said there was no such rule. Whew!
Next ordeal: My daughter spent one week in the hospital after a scary seizure that was prompted by a high fever. She stopped breathing, but my husband and I know CPR, thank God. She had many tests performed that week. I went to pick her up the first day she returned to school and found her parked in front of an open door (in January). She was soaked from her hips to her knees in her urine. I was highly upset. I made sure the teacher was aware and reported it to the Special Education department and the school's office. 2 weeks later, I was called at work and told that she fell out of her wheelchair (a child that cannot walk or move around on her own?). I rushed to school to find the sweet face of my little one bruised and swollen. Apparently, the teacher allowed another child to push her through the gravel playground. She was supposedly strapped in, but if she was, she wouldn't have fallen out. I had to take her to the hospital for an MRI and a check over. I had enough and reported the teacher to Child Protective Services. After an investigation was done, the teacher was not allowed to return to teaching (at least in our school district). That year was filled with non-stop frustration of "weird" incidences and off-the-wall statements from the teacher on how I should take care of my daughter. Being in a small town, I was unable to find a daycare that would take on a child with special needs, much less an individual that would be willing to care for her. The only comfort I had in leaving my daughter in the school was that my husband's cousin was one of the aides in the class and promised to watch over my little one when she could.
In the second year with the public school district, my daughter was bitten twice, and sent home repeatedly "sick," when she was not. I learned later that some kids were sent home "sick" due to the fact that if the aides or teacher called in sick, there was no one to cover. I met with the superintendent of the school regarding many issues that had been going on since my daughter had been enrolled, but that got me nowhere. I also talked to many other parents that had stories of their own. I then made the superintendent aware of problems I had heard about from the other parents. Reasons given were that the assistant superintendent was in the process of quitting and any follow-up and investigation had fallen through the cracks. Also, they said that the teacher did very well during her interview and was hired due to the fact that she had worked with children with special needs in a high school for 1 year.
In the third year with the same school district, I thought things were going to be better. The PPCD program had gone through 4 teachers within my daughters two years in that class. I was finally impressed with her new teacher, but one month later she quit and moved away.
Last year, her teacher was much nicer and experienced BUT my daughter didn't get to finish the year without having a bad accident. She was propped up against a bar in a big metal spaceship on the playground. She was not spotted (my daughter can bear weight on her legs but cannot stand on her own). She fell back and split her head open. This resulted in her getting 3 staples put in her head.
In closing, my daughter is now 6 years old. My daughter's experiences prompted for me to search for a new, safe learning environment. I loved the town I was living in but the Special Education department had too much to be desired. I just bought a home in a new town and am thrilled with her new class and teacher. She's already showing signs of improving and seems to love her new classmates. - L.E.B., Pflugerville, TX
My non-verbal son was bitten by a fellow first grade classmate as they were preparing to leave for the day. He was crying uncontrollably so they took him to the nurse. She called us to come get him, saying to my stepson something about this kind of child shouldn't be in school. Once I got there my son showed me clearly what had happened. We returned to the room where the incident occurred and he was able to indicate who bit him to the teacher and other classmates; even though that child had left for the day. The nurse had also indicated to me that he shouldnt be in that school, because she couldn't understand him (something to that effect). This was all during the chaos of kids being called to the buses, etc., so I couldn't be sure of what was said. Because of this, I didn't report it. - S.C., Pittsburgh, PA
Here are several Horror Stories that come to mind:
1. At birth, as my ob-gyn doctor was finishing up my C-section, the neonatologist had examined our firstborn baby girl. Facing away from me, she put her arm around my husband to tell him of her findings. The single word "chromosome" floated across the room and struck my ear, at which point I went into shock and started screaming for my husband... (Our daughter has Down syndrome.). Then, my trusted ob-gyn muttered to the doctor next to him, "Oh, I had suspected that." (Without mentioning this to us? Huh?)
2. The home care physical therapist had us grasping our baby by the arms with her head flailing back unsupported, taking her from lying to sitting. Even my mother knew that looked WRONG and had us stop doing it soon after.
3. A pediatric psychologist examining our 5-year-old and concluding, "Just look at her... you can see the child inside her she would have been..." - Anonymous by request, San Diego, CA
I am a mother of two boys. One is listed ADD/hyper and dysthemic disorder. He is 16 years old. The other is a 19-year-old that is listed EMH at school, but on record ADD/hyper, dysthemic disorder and intermitted explosive disorder. The state found the school system guilty of not giving a free appropriate education, no transition plan, and no behavior plan. The whole IEP was not valid. I have literally stayed at the school just about every day because teachers would not do their job. I finally asked for a bed and a room to live in. With all the complaining from us and the state to do the IEP right and to get it in order, it was to no avail. Now, because of them not seeing that all the federal laws were handled the way they were suppose to be, there was legal action against my child.
All the advocacy group tells you to do is to write letters. Letters are good and keeping good records is important, but it does not make them do their job. They tell you they are no different from other children and that is how they are treated. If they had put in place the behavior plan, behavior specialist, and private tutoring or home bound as requested and had read the doctor reports, we would have not gone to court over assault on a government official. Had his one-on-one aide been there, this might not have happened.
When you are at a meeting at school and you want something done or request an evaluation, please write it down. If they tell you they are going to do something, document it on the IEP or on the back of the paper for the school. I have all my papers, and if they had done their IEP right, this would never have happened.
We have now finished with the courts. The free lawyer that the court appointed requested a forensic evaluation. He found that Jacob was indeed mentally retarded and mentally incompetent. At court, the D.A. still wanted to have the trial. So we went another week later for the competency hearing and the same day after that was suppose to be the trial if they found him mentally competent. The D.A. put the one-on-one aide on the stand and tried to prove that my son knew what he had done. He asked the normal questions, like how he was doing in school, if he was doing things like the other students and if he seemed normal to him. The aide answered yes to all. Our lawyer then asked what kind of a degree did he have in special education and he said a high school diploma. The lawyer also asked why he was working with him and he said just to help him out some. He also said that he did not need that much help but he was hired for the explosive disorder. My son has never been in trouble at school like this before.
The school and I went to the manifestation meeting and all that ever came out was that the resource officer was elbowed. Nothing else had been proven otherwise. From what I have put together, my son might have elbowed him to kid around with him. There are really no witnesses to the incident. The teachers statement that was taken proved that, but there was one teachers statement that makes me wonder if the officer had done something to provoke my son. The statement read: "Officer Johnson told my son to hit him again and then he placed him under arrest." Why would he tell my son to hit him again? I have asked for the SBI and the FBI and also the local police to investigate the officer, but they all have refused. It is bad enough to tell a "normal" person to hit you again, much less a mentally retarded student that has explosive disorder.
When one of my sons special education teachers took the stand, he was also asked what kind of a degree he had in special education and he stated he had a masters degree in agriculture.
The judge found my son mentally incompetent to stand trial. All three charges of assault on a governmental employee, disorderly conduct, and resisting arrest were voluntarily dismissed. I tried to speak with the D.A. before all this took place, and also spoke with the supervisor at the jail and several other people, but no one would look at the paperwork (not even the school board). All of this could have been avoided if they would have listened and checked into things further. - T.A., Rutherfordton County, NC
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