We need help for our son, Eric who has autism
Dear Congressman Rodney Frelinghuysen, Mr. Stuart Burns (for
Congressman/Dr. Dave Weldon and Congressman Dan
Burton), Senator Robert Martin, Assemblyman Alex DeCroce, Assemblyman Joseph
Pennacchio, and Laura Bruno, Morris County Daily Record
Our son, Eric was born normal on January 17, 1985 and regressed into Autism after receiving the measles-mumps-rubella (MMR) vaccine on April 28, 1986. In 1995, we found out that that Eric tested positive for myelin basic protein antibodies, elevated measles antibody titers and T-cell abnormalities. Vijendra Singh, PhD of Utah State University and Jim Oleske, MD of UMDNJ, Newark, NJ found these results in immune panel blood tests done on Eric. In 1998, Joel Rosh, MD found that Eric had colitis and in 2002, Arthur Krigsman, MD found the same along with a quarter-size painful stomach tissue in Eric's esophagus. In looking back at our videotapes of Eric we saw Eric progressing and meeting the developmental milestones until he got the MMR shot and then we lost him to regressive autism.
In 1992, he was accepted at Allegro school for autism. In the last two years, Eric has had tantrums where he would bite, head-butt, scratch, kick and pull hair of family members. He is over 6 feet tall and over 200 pounds. In July 2002, Eric had an incident where he bit an aide on the school bus coming home. We asked for a bus that would just contain an aide and driver and that Eric would be the only passenger. We tried to get Superintendent Eugene Vasile of the Parsippany Board of Education to help us but he was arrogant and insensitive to our situation and had no understanding about our situation or Eric's situation. We did finally get help after several weeks of calling people, but Superintendent Vasile was of no help.
At Allegro school we got respite care where they would send someone over to help us and it was paid through state funds. Then in February 2003, we received no more respite services from Allegro school and during the year Eric was suspended from Allegro school because of his behaviors. Repeated calls, notes and emails to the school resulted in not even the courtesy of saying they would help us. Debby Lewinson, founder of Allegro and has a son with autism in his twenties, assured us that once Eric had Medicaid she would help us. Eric was eligible for Medicaid in May 2003 and Debby Lewinson knew that I and my daughter, Julie were going to Ireland to a gymnastics competition at the end of June 2003. Yet, when we asked about respite help during that time, Debby Lewinson said the school was closed and no one would help.
In September 2003, we told Debby Lewinson that we had someone to help us and could she please put the person on their respite payroll. Despite repeated notes, emails and phone calls, again the courtesy of a response was never received. Recently, we got money from the New Jersey Division of Developmental Disabities (DDD) and where able to pay for respite care, but from February 2003 to the present we no longer got help from Allegro regarding respite care. NJ DDD told us that Allegro group homes (part of Allegro school) had space in their homes but yet when we inquired with Debbie Lewinson she said their was nothing there for Eric. When NJ DDD told us to take it or leave it regarding putting Eric in a residential center at Devereux in Pennsylvania (it was a 2 ½ hour drive one way, there were safety issues where people could walk out and we felt in general it wasn't appropriate for Eric), Debby Lewinson said it wasn't an appropriate placement. We spoke to a group home that was considering Eric but after speaking to Debby Lewinson they decided not to. Now we are talking to a group home director along with three other families to see if we can get a group home started to not only help Eric's placement but three other young adults with autism.
The child study team at the Parsippany Board of Education said that it was recommended that Eric should be home schooled but how would we do that and be able to meet our financial needs. As it is with all the suspensions of Eric during 2003, I couldn't maintain a day time job because someone had to be home when Eric wasn't at school. That suggestion was totally ridiculous. On Friday, February 20, 2004 there was an incident at Allegro school regarding his behaviors and Debby Lewinson called us Friday night to tell us it would be best to send him to St. Clare's Hospital where he would go into the psychiatric unit because she was going to suspend Eric on Monday. On Monday, February 23, 2004, we asked Debbie Lewinson how long she would suspend Eric and she faxed us back a statement that he could come back to school on Tuesday, February 24, 2004 but that he would be terminated from Allegro school as of Monday, March 8, 2004. As it was, I took Eric to the Parsippany
Pathmark in the morning to go shopping and he had a tantrum there where I had to call the police and take him to St. Clare's Hospital after all.
If Eric had gone to school his routine would be the same and things would
have been different but since he didn't go we will never know.
Eric is on 6 different medications for his behaviors and over the last two years, these medications work for a time and then don't. Every time something happened at Allegro school with Eric we were accused in a notebook that came home that we weren't medicating Eric. We explained to them that these medications work for a time and then don't....that in fact medications like Risperdal and Seroquel have adverse reactions that can cause aggressions. Debby Lewinson told us that when Eric was on
Risperdal, she didn't see any aggressions with Eric but we were seeing constant aggressions from Eric at home. I asked the Parsippany Board of Education Child Study team to put the paper work in September 2003 to get Eric into the Eden Institute for Autism in Princeton, NJ because they have children/adults like Eric and take care of them in their group homes as well. Recently I found out they never followed through and again on February 23, 2003 I told them to put the paper work in.
Stephanie Sabatani of the Developmental Disabilities Council called and asked if she could help. She said she would come to the house. When she asked what problems Eric had, we told her he had aggressions at home. She said she wouldn't come because she was afraid Eric would hurt her.That was in the Fall of 2003.
Then in January 2004, she called again to ask Helen what services she could provide in-home behavioral. When Helen asked her again if she could come, Stephanie said it was too dangerous. Helen thought later on how ironic that was considering if you called the Fire Department and then having them say they couldn't come because the fire might be too dangerous.
On Friday, February 27, 2004, Dr. Bell and two members of the staff at St. Clare's Hospital called me over for a meeting at St. Clare's Hospital at 2PM and said that Eric had to be released on Monday or Tuesday, March 1 or 2, 2004 to either us or to Greystone Psychiatric Hospital in Morris County (where there has been patients who eloped from the hospital, been hurt or abused, etc.). In fact, Dr. Bell said that they had the option of sending Eric to Greystone over the weekend without our approval if they saw fit. Dr. Bell said we should see a psychiatrist for ourselves.
We asked Allegro school to help develop something with Rutgers NSTM where they would come up with a plan to deal with Eric's aggressions that involves his lack of speech and his communication through his word/picture book. Dr. Doreen DiMininico was nice enough to try to work with them but they never helped her so we talked to her and developed something on our own, but the school never followed through. They seemed to have no interest in helping Eric.
All these agencies (including the Allegro school, NJ DDD and Parsippany Board of Education as well as the Developmental Disabilities Council) that are supposed to help developmentally disabled kids they are unwilling to help the kids that really need the help. They like to push all the success cases and wash their hands of any children/adults that really need the help. If they tried as hard as we have for looking for medical interventions that would help Eric get better than we wouldn't have the present problems we do have with Eric. That would require effort on their part that they don't want to give.
We need help desperately. Parents in New Jersey and out-of-state that I'm in communication doesn't understand why we are not getting help. If Eric had cancer he would get the proper medical treatment but because he has autism, he can not get it.
Raymond Gallup, parent and Founder
The Autism Autoimmunity Project
45 Iroquois Avenue
Lake Hiawatha, NJ 07034
cc: website communication to Governor James McGreevey, Senator Frank Lautenberg and Senator Jon Corzine
DEFINITION * TREATMENT * PREVENTION
Autism is 1 in 150 children today, 1 in 68 families! TAAP (The Autism Autoimmunity Project) is a non profit charity dedicated to obtaining funding for independent research addressing immune and immunogenetic abnormalities in autism. Please visit our website for more information at http://www.AutismAutoimmunityProject.org and help us put an end to this silent epidemic!!! Know the Cause, FUND the Cure!