We had our IEP meeting today at Dayna’s school….we went in hopeful, came out hopeless. IEP is short for Individualized Education Program, and the IEP team is made up of many educators from the school, school administration, parents and sometimes legal representation on both sides. We needed the meeting, we have been dealing with so much this year with Dayna. It started to get us to really look at what the future would look like. We started looking at non-public schools, realizing that traditional learning is not going to help Dayna as much as hands on vocational learning would. Maybe if she went to a specialized school she would want to go in the morning and not put up a fight. Even if she still fought us, she would be going to a more dedicated and supportive program and we would have peace of mind knowing she was learning relevant skills. Besides, Dayna should be going to high school next year and the school district doesn’t even have a program in place for high school. Either way, there was a lot we needed from the school district and we asked for a meeting of the IEP team to discuss our needs. I wanted to write a blog tonight about the IEP process and what happens in the meetings. It can be a brutal process, and a procedural nightmare. I wanted to educate you on the process, players and procedures involved. But today’s meeting took everything out of me. I spent the night instead writing the letter below to members of the school board, the superintendent of schools and members of the special education administration. Here is what I wrote, I removed the names of school representatives. I think you will find it enlightening and a view into the world of IEPs:
Good Evening. We wanted to reach out to you regarding our daughter Dayna, who current attends the autism program at New Windsor Middle School. Dayna is diagnosed with severe autism. Her last diagnosis was just recently at Children’s National Medical Center in Washington. This fall she has been fighting us tremendously each morning when we try and get her ready for school and on the bus. She will scream and kick as we try to get her dressed. As a result, there have been many days when we could not get her to school. For the most part, in the beginning the non-compliant behavior was just verbal, with her saying “no school” or “no bus”. Sometimes she would fight harder, but it would also be intermittent, with some days being fine and her getting on the bus without a problem. Each week it has grown worse. By October, she was missing multiple days. I made a video on October 9th that was sent to the school, and her doctor, that showed the physical fighting and screaming that would extend for 30-40 minutes. From the date of that video on she has missed more and more days of school. On November 10th and 11th, Dayna’s teacher and Ms. B, a supervisor, came in the morning to assist in getting Dayna to school. Both days were tremendously hard on my wife and me, with Dayna screaming and miserable while they forced her to go to school. They would get her on the bus wearing her pajamas and without breakfast. The afternoon of November 11th they stated they had no more resources to come back for the rest of the week and said, “Hopefully you will find success with some of the strategies used by Ms. T with the morning routine.” On the 12th of November, my wife and I fought Dayna tooth and nail and got her on the bus using their techniques. Dayna was miserable and my wife and I were at each other’s throats with the stress involved. It was starting to become clear that this was not getting better, and it was having a horrible effect on us. The school’s staff came back on the 18th, 19th and 20th. Same story, Dayna was unhappy, screaming and fighting, it was effecting everyone. I decided on the 20th to go to work late and stay home to witness what was happening. That day, a third person was there, a behavioral specialist whom we were unfamiliar with. Dayna still put up a fight, but with the three school staff plus my wife around her seemed to give up after a while. She did get on the bus, but even one school representative said she seemed very down. So from my standpoint, it took four people to finally ‘break’ her to the point she gave up the fight. Not once did they determine WHY she does not want to go. Not once have I heard a plan that considered the impact on the parents, a 12 year old sister or a 4 year old brother. It has brought tremendous stress on my wife and myself. It has also had an adverse effect on her younger sister, Kiley who is in 6th grade at East Middle School and younger brother Sean who is only 4 years old. In addition, on September 20th I suffered a heart attack. When this happened, Kiley’s first question was “Did Dayna do this to Dad?” A short time later we saw a text from Kiley to a friend speaking of how hard it was at home because of Dayna. “You have no idea what it’s like for us” is what a 12 year old was saying to another 12 year old about living with her sister. We made the decision to stop the program of coming to the house, it was not helping and it was becoming too hard for all of us. We also started to feel like Dayna was trying to tell us something and the school’s answer was to ignore her and force her to go. We brought her to a neurodevelopmental psychologist at Children’s National Medical Center for a consult at the recommendation of her neurodevelopmental pediatrician, also at Children’s. The psychologist felt that they were not trying to determine why she did not want to school, and by forcing Dayna to go it was not helping and potentially hurting her more. Dayna only communicates on a very minimal level, so she is not able to tell us what may be wrong. The doctor felt that private placement at a school with a program developed for autistic children would be best route to take. I attached a letter she wrote to the IEP team with her recommendations.
As a result of the non-compliant behaviors and her doctor’s recommendation, my wife and I looked into a couple of programs at non-public schools. We can now see the benefit of the specialized schools and the advantages they have. Dayna functions at a 1st-3rd grade level even though she is 14 years old. The specialized programs at the private schools are focused on a vocational level, rather than straight learning. I have wondered recently if some of Dayna’s anxiety about going to school was based more around the fact that she has started to realize learning is hard for her. The private programs have different forms of education that include more socialization, programs like horseback riding, and learning job skills. The school in Glyndon for instance has a fully functioning restaurant for training. It is likely that Dayna will never be able to live on her on her own, and a program like that would at least teach her a skill she could use at a supported job. It may give her a sense of being and independence. Dayna should be going to high school next year, and yet at this time there isn’t even an autism program at the high school level in Carroll County Schools for us to observe or compare it to.
Today, December 10th, we had an IEP meeting that was held at our request. There were two items we wanted to discuss. The first was Dayna’s continued non-compliance that has kept her out of school throughout the school year. The second was to request that regardless of how we solve the non-compliant behavior, Dayna be sent to a non-public placement at a school specializing in autism related disorders, with vocational and life skills focused learning. Unfortunately the meeting did not go well in any form. To be candid, we felt ganged up on by some members of the IEP team. I started the meeting by trying to relay our concerns. Ms. E, the attorney for Carroll County, then took control of the meeting. She started asking leading questions to the staff and ultimately turned the tables on us claiming they could fix Dayna’s non-compliance but we were not letting them. They stated that their program of coming into the house to get her to go to school would work and we need to give it time, even though we emphatically stated it was too hard for us and it was having a detrimental effect on everyone at home. We were then reminded that although they were trying to help, the school does not need to be concerned with the effects at home. They did not address directly why Dayna was acting out, saying she is most likely doing it because it works. Although initially avoiding the non-public placement issue we wanted to discuss, Ms. E ultimately completely discounted the idea of non-public placement by stating the school could just build a program around whatever we need. She laughed at the fact that there was not a program for us to see when Dayna moves to high school next year, saying ‘that doesn’t matter’. Ms. W, the Special Education Instructional Consultant chuckled out loud at our psychologist’s letter of recommendation, and then when I addressed her about why she chuckled she stated she sometimes makes connections to ‘unrelated issues’ that make her laugh. Surely this was not a time that my wife and I saw any humor. The behavioral specialist, Dr. C completely discounted most of the letter from Dr. Atmore in front of everyone. We found that to be surprising since Dr. Atmore came highly recommended being a respected developmental neuropsychologist at Children’s National Medical Center, and we know very little about Dr. C since there is very little online about him. We felt truly ganged up on and found Ms. E, Ms. W and Dr. C to be condescending and rude. We finally stood up and decided to leave. I cannot explain the level of anger, despair and helplessness we felt walking out of that meeting.
We have been very respectful of the school system throughout our time in Carroll County. We have watched other parents complain, act aggressively and treat members of the teaching staff poorly without reason. We on the other hand have come to every IEP meeting prepared, calm and with the mentality that we are all there to help Dayna. We always felt we should treat the members of the IEP team with the same respect we felt we would be afforded. About a year and a half ago Dayna escaped the school without anyone noticing. She eventually was found knocking on another door to the school to get back in. Being that she could not tell people who she was, and the danger she was put in, Child Protective Services was notified by someone at the school. The teacher that was found responsible for losing Dayna was ultimately terminated. However, we were not told of the teacher’s termination until well after the fact, and were not told of the incident involving our daughter until CPS contacted us. There was an investigation and a hearing, and yet we were not allowed to see any of the results of the investigation nor the specifics of what happened. We have no idea of what really happened to our daughter that day, other than the fact that she was lost and we were not told about it. Even with all that, we worked with the school for another chance, trusting that they were doing the right thing. Today, we walked in to the IEP meeting again trusting the school system, and instead we left disappointed and feeling disrespected. I honestly walked to the car feeling so trapped and sad, because I realized that our only choice may be to move out of Carroll County, which ironically would be disappointing to us because her sister Kiley loves East Middle School and we really want her brother Sean to experience the wonderful environment at William Winchester Elementary.
We are reaching out to you for help. We are reaching out to you to help our daughter who cannot speak for herself. We are requesting a referral to a non-public program, preferably the Forbush School at Glyndon where we know of numerous other Carroll County parents that have found success for their children. We are requesting this first without bringing in additional legal counsel, reaching out to you as parents alone. We hope you will look into this and find a way to help Dayna, and our entire family.
We truly thank you in advance for your time and consideration.
Patrick D. and Deborah Wilson, Parents – Dayna Avery Wilson
What happens now? Who knows. We could be in for the fight of our lives, or we could be surprised by the school’s administration. We have one focus, get Dayna in the best program available to her. If they want to make us fight for our daughter, we will, using every tool and resource available.