Ever heard something said that made you so mad and disgusted that your whole body shakes in anger? This has happened to me many times through out my life...not sure if this is good or bad. Maybe I am simply more sensitive or I am more passionate in my belief of right and wrong... However what I heard this time wasn't said directly to me...
I know I called the attorney...I just can't remember if it was Friday or Monday. We weren't able to chat at length right away, so we scheduled that for a few days out. While waiting to tell him all the details of our situation I asked Ethan's nurse to ask her source if we could talk. After school that day I was able to chat with the source, she shared that her thoughts on why the district is doing this was because of $$$ and that it was too hard to listen to the plans when us mom's weren't in the know. While chatting with her she reminded me of a simple way to get answers from the district. See Ethan is on an IEP, Individualized Education Plan, and every year when we do the sit down review I get another "blue handbook", it's actually titled, Notice of Special Education Procedural Safeguards for Students and Their Families....now where did I put that...
When I found it I updated myself on the 'Parent Participation' section and their outline of IDEA(Individuals with Disabilities Education Act). The handbook rules state "You will be given opportunities to participate in any meetings about the special education needs of your child. This includes the right to participate in meetings to discuss information about the referral of your child, his or her need for evaluations, your child’s eligibility, development or revision of your child’s IEP, and placement decisions." "However, districts may discuss issues affecting your child’s program without including you. These discussions include preparation for an upcoming IEP meeting, lesson plans, and coordination of service delivery. But, you must be invited to participate in any meetings where decisions will be made involving your child." -So I can see why they didn't include me IF the district only remembered the second paragraph!! But what stuck with me was... 'right to participate', 'placement decisions', and 'invited to participate'...where the hell is my invitation?!?! I called the school and requested that IEP team meeting.
Later that afternoon I noticed I'd missed a call, the voice mail left was from the school district's nurse. She was calling to set up a time to go over what they had planned for the next school year. I called her back immediately and asked her if she was talking about the IEP meeting I'd requested? No, she was actually wanting to setup a meeting to go over their plan. I told her that they can't just change things without my knowledge and/or involvement. I told her that the way she's talking, it sounds as if they been planning this for awhile and behind my back I told her that I had requested an IEP team meeting, not a meeting where you tell me what's best for my son with your goal of saving the most money!! She stated that they might have figured out how to have one of their nurses for most of the time. All I heard was that my trached son MIGHT have a nurse for MOST of the time?!?!? ARE YOU F**KING KIDDING ME!!! I yelled in the phone that this isn't right... you can't just sacrifice my son's health and well being to save $$$!! I hung up on her....I had to, I was so mad I nearly threw up. I was being denied the IEP team meeting and being told what they were going to do. They were doing this whether or not it was right or wrong. They were deciding and planning regardless of his medical history and regardless previous orders from our doc. They were changing it all just to save money.
My cell was ringing. She was calling back. I didn't answer and let my voice mail take it. Later I listened to the message.... She wanted to know if Monday or Tuesday of next week worked best and for me to call her back to let her know. Then she went on to say "I understand what you are going through, it must be hard to deal with"..... I hung up and didn't listen to the rest. DON'T TELL ME THAT YOU UNDERSTAND!! IF YOU UNDERSTOOD THAN YOU WOULDN'T BE DOING THIS!!
My FRIENDS & FAMILY get the right to say they "UNDERSTAND" because they SEE what I deal with!! My friends and family have been by my side during EVERYTHING....my friends and my family UNDERSTAND me! Stuffed shirts looking at things in black and white and in dollars and cents DO NOT have the RIGHT to say they "UNDERSTAND"!!
The next day I received another phone call...it was from the psychiatrist at Kellogg Marsh. He was calling to set up the IEP meeting! So it seems he'd just been busy and wasn't able to get back til now. I wasn't being denied the meeting yippee! So I shared with him my side of things and what I knew and that I was desperate to know more. He wasn't aware, til now, about any of this and told me how these IEP team meetings go. He told me that it is my right to get a meeting when I request one. We scheduled one for the following week. I then told him that I would be bringing my attorney. He then said he'd ask the Director of Special Education for the school district to sit in as well. I said yes please, because it seems odd that I keep being told about everything from the district nurse. So it was planned I would get my answers and I would be involved after all!
Later that week I chatted with the other mom involved, the mom of Ethan's trached buddy, she asked if they called me and said that the district nurse had called her too. She asked if I had met with them yet and that they are meeting with her. It turns out they are meeting with her the day before my IEP meeting. We then vented about the situation, I shared how I hung up on the district nurse and she shared what the district nurse had said to her. This school district nurse told her "the boys do not need a nurse" "they'll be fine" and "your nurse does nothing"...I was stunned. I started to shake. Who the hell is she, to say something like this?! Comments like this make me scared for the other families of special needs kiddos within this school district:( The other mom and I are completely offended and disgusted with the way the district nurse has been handling things. At first we just understood her position as the messenger for the district's plans. Now we are not so sure.
So as things usually go in my life.....plans change. The original meeting scheduled had to be changed because the District's Director of Special Education is not going to be the Director of Special Education for the next school year. So it was arranged so the one who would be taking over could attend and the meeting was set for the following week...
I blog to advocate for my son and others like him. My family has been unable to escape an awful experience. One we never want to relive, but are learning so much from. We are fighting a School District; getting them to provide special medical needs for my son. My mission; Limit how many times a School District can move a child and the care guidelines that public schools follow for medically needy kiddos needs to be regulated. Thanks for your interest in our daily life and my mission.
