Saturday, February 28, 2015

How Long

I have much to be happy about. I have a wonderful husband that loves me unconditionally and supports me endlessly. My three children are healthy and beautiful. I have my health and my relationship with God that keeps me in awe of everything that I have.

But even with a life that seems, on the outside, to be perfect (as some say without knowing). It does get dark. Very dark. I have been struggling. I hate it. With everything that is so good in my life, why do I really have to struggle so much?

Lizzy is our oldest of three. Born at 40 weeks with a healthy pregnancy, she was never going to be our “oldest”. Our strong leader that the first born usually is. I have grieved this many years go and am ok with it. Grieving milestones has helped me cope over the years. My struggle is real. I am sure that many parents of disabled kids or adults are dealing with.  While the urge to judge is strong, please understand, I don’t want to feel this way.

How long do I have to do this? Lizzy has shown little progression over the years. Why would a loving God choose this for my life? What is the plan here? Am I doing something wrong here? I have never prayed for complete healing. Lizzy is a gift. I have always felt that if I did pray for that it would be like exchanging a precious gift for a shiny new one. I just feel terrible about doing that. I am thankful for his gift to us.  It has nothing to do with getting a break from her because she is in school everyday for 7.5 hours a day. Mentally, this is hard.  My mind is consumed with is Lizzy hungry, tired, having a seizure, needing to be changed, too cold, in pain, happy, upset, etc.  All day everyday.  I understand that as moms, we do this with normal children too. I get that. There is no mental break. I go to sleep and wake up with thoughts of Lizzy.

I can do this physically because I’m healthy. So as long as I stay healthy, this is possible. But there is a chance that I could break down mentally. It happens. It is real. I know this. I know a lady that I respect more than anyone. She cares for her 35-year-old daughter who is more disabled than Lizzy is. I reach out to her when I am struggling. I cried when I read her response to my struggle. Honestly, I don’t want to do this for 35 years.

So this is how I have been praying recently. Just like I am taking to a friend…God, can you either a) heal her? or b) take her? because this is becoming too much for me. Do you want to see me struggle? I was talking with Emily and Jack about this. Jack says, “yes, mom, you should pray for Lizzy to be like us.”  Lizzy will be 16 this year and I am ready. Ready for a change.

I have never had nor currently have thoughts of hurting her or myself.

I have been told that my struggle helps others. That my words gives others encouragement and strength to make it through their day. I know that other moms with kids like Lizzy are struggling.

I am thankful, I really am.
I am blessed and I know it.
How long Lord?

Power Tripping

I have never been a person that starts a fight. I do not enjoy drama in my life.  I certainly don’t shy away from it.  It depends on how important it is to me and if it will impact my life. I try to live my life with the upmost of morals and values. Until you cross me or my Lizzy.  I can go from 0 to 60 in 1.3 seconds when it comes to my Elizabeth. I can sniff you out and tell if you have pure motives or not.

I was late picking Lizzy up from school one afternoon. Ten minutes to be exact. I am pretty sure that I have been late in picking her up from school over the past 12 years. In fact, I am 100% positive I have!!! But, it never created such turmoil as this incident did.

I don’t pretend that I have a “pass” because I have a child with special needs. I try, like other parents, to be one time, have lunch for their child, sign forms when needed, etc. However, I do expect some flexibility when it comes to her.  Being late dropping her off falls under the category of flexibility.  I was late picking her up so….

It started with “darn, I’m sorry I’m late” to “say what now?

An administrator, who was new, decided to go on a power trip……just for fun. I had never met her. Had we met, I think she would have thought twice about that trip. I don’t play that game and most know this. I was no longer allowed to just drop her off or pick her up. I had to walk inside the school and sign her in and out. For 12 years, the teacher or aide met me at the van to talk about her day and help me put her in the van. Her aide was no longer allowed to discuss with me details about her day. I am no longer or really have never been allowed to discuss her day with the woman that changes her dirty diapers, holds her during her frequent seizures, spoon feeds her, washes her beautiful face, brushes her teeth, walk hand in hand with her, sings to her, and loves her for 7 hours of the day??? Am I hearing this correctly?

When I respectfully tried to set up a meeting with this administrator, she completely ignored my requests. I called and left a message and sent an email.  This is the email that I sent the following day after no response.

Good afternoon. Due to the lack of respect on Ms. Livingston's part, I now have to discuss this through email. I asked for a meeting twice. Once in an email two days ago and again this morning. A simple call or returned email would have been respectful. Apparently, this was a big deal Tuesday. Now, I can't get a response from anyone I sent the original email to.

I was late picking Lizzy up Tuesday. I usually get her by 2:10 and I got there at 2:20. Her aide walked her back down to her classroom and then walked her back up to the office when they called for her. So I was 10 minutes late. I take responsibility for that. Her aide told me that she is needed back at 2:15 to the classroom. I have picked her up later that
10 minutes late with no problems.

For the last 11 years, Lizzy has been walked out by her aide. With no problems. Lizzy has also had an adapted school day. She has never stayed a full day, that I can remember. I positive I've been late picking her up in the last 11 years. Also, her aide has been the one to come get her in the morning. With there never being a problem.

Yesterday I was told that I had to bring her inside in the morning and sign her out in the afternoon. Also, that her teacher would bring her out.  A teacher? I don't understand that at all. As a parent, I want a certified teacher in the classroom at all times. That is unsettling

I was approached this morning by a woman asking me to move my van. I waited for someone to come get Lizzy for 10 minutes. I asked the woman her name and she said Ms. Livingston. I'm pretty sure she knew who I was. I was walking Lizzy in. I said "oh good, did you get my email yesterday?" She said yes and just stared at me. I was offended. I felt disrespected. I'm not a person that takes "power tripping" well. I was immediately on guard. I asked her to call me to set up a meeting to discuss this and she says to me "oh, you can't do it now?"

I'm educated. I've taught in the public schools. I've been apart of IEP meetings and never treated a parent like Ms. Livingston treated me. And because I haven't received a phone call about setting up a meeting to discuss this ridiculous issue, I had to send this email.

Thank you for your time.

Lisa Viele

I did receive a response from the principal about a meeting. We met. The three of us. This administrator was the most difficult person I have ever dealt with in the school system. She obviously was more intense than the days before. But that is to be expected because I emailed her boss and her boss’s boss and all the way up to the top. Nothing was resolved and the principal was going to check on some things, ie. Protocol and procedures but what happed the next day made all this extremely ridiculous.

While I waited to hear from the district office, I followed their procedures. They weren’t going to win this, but I was going to play their game. But not long. I received texts and phone calls the following morning that Lizzy was have a terrible seizure and I was to come get her. Her teacher and this administrator were the ones contacting me. I thought to myself, is her aide not there with Lizzy? I immediately got in my car and drove the 20 minutes to get to her. I walk in the office and I hear on the walkie talking “she is here”.  I walk into the nurse’s station and see her aide and Lizzy in the back. There were about 6 people standing there wide-eyed and pale. I walk to the back and ask questions and her aide is silent. Someone else is telling me what happened. Here is what happened.

Lizzy and her aide were in a portable. Lizzy started having a seizure. Her aide contacted the teacher and administrator. They contacted me. Huh? No, I don’t think so. I immediately send another email demanding that I speak to anyone that even looks at Lizzy during the day. I gave them until the end of the next day to contact me. I was contacted by a person at the district office apologizing and confirming that I may speak with anyone dealing with Lizzy at any point during the day.

End of story. I have been apologized to by everyone but that administrator. I’m okay with that. I call this person a bully. I was bullied by this administrator but she didn’t get away with it.

I have had several meeting over the years with teachers and administrators. There are a few that have this “this is my school” complex and try to deal with it a certain way. My advice to those just starting out is

    Always take something to write on.  When an administrator is talking write a letter a and circle it along with some talking points. When a teacher is talking, write a letter t and circle it. Just so you know who said what.

    Be respectful. Thank them for the meeting and their time.

    Be firm in saying what you want.

Ie. Your child ‘s physical therapy time is decreasing.  Ask for notes that were taken on that evaluation. If they can’t produce them, tell them that there will be no decrease in time until there is a formal evaluation with notes you can have. Then request another meeting for that specifically. 

If they have notes , tell them you still want pt and make note of it in the meeting notes. Specifically cross out the decrease in pt sentences, with a magic marker. Then you can sign the IEPJ

This happened to us.

   Ask who everyone is.

    Make sure you get a copy of everything before you leave to prevent any altering of the documents. Not everyone is an honest Abe.

    I always have my attorney’s number and a friends email from a local news outlet. They both can be powerful and instrumental in getting what you need. 


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