Thursday, January 17, 2008

Just the "Facts" Mam - The importance of records

Keep a record of everything! Before Nicky was 3 my records had already been used to get Nicky the proper medical care, diagnosis and successfully challenge the school district to obtain the best school placement for him.

Before I had any idea what was happening My notes gave me the ability to describe Nicky's medical history and development from birth to 2 (the details which would have escaped any parent over time, much less a sleep deprived mom). My notes were the tools I used to help him in ways I could have never imagined. My "mommy journal" exposed a history of his medical problems, dietary issues, allergies and quirky behaviors that helped the doctors as we journeyed toward diagnosis. I was confused, frustrated, scared and fatigued and didn't know what things were important and which were not. It was my notes painted a picture and understanding. They revealed almost all of Nicky's developmental and medical challenges that individually didn't mean much to me. But when put together for the doctors, they immediately saw patterns that lead to early diagnosis. We all know early diagnosis can lead to early intervention and early intervention is the key to helping all kids diagnosed with ASD. So we have my notes (and not my brain that was putty at the time) to thank for helping Nicky get an early diagnosis!

After diagnosis I continued to use my daily journal to keep track of most of what went on in his early intervention program from home services to his first school placement. Again, it was my records that came to the rescue and helped me to secure the educational placement that was best for Nicky, after he spent 9 months in a program where I saw him regressing.

Sadly, it was not my passion that he was being harmed or not growing to the best of his ability that made it possible for me to change my son’s placement or get him needed services. These feelings and opinions are important but they din't help the assistant principles, caseworkers, judges or mediators give us what Nicky needed. It was the facts - recorded and kept daily, which showed patterns - that gave us credibility and got our needs met.

As parents we are the only ones who can document what is happening with our children in the big picture. When Nicky began regressing in school educators and administrations took a position about what Nicky needed and it was different than my position. I know that others often believe they know what is best for our children, and sometimes they are right and sometimes they are wrong. It's up to us to fight the good fight for our kids. One of my fights began with a 9 hour IEP where I got physically ill battling back and forth over placement. In the end it was the school journal that I kept with his teacher that made the difference. It was the journal that showed a pattern of requests unmet and issues un addressed. It was the journal that took the conversation away from being my word vs someone else's word.

1. "The Parent vs the Expert" - when it came right down to it, because of my natural desire to protect my child, I am viewed as: emotional, attached and incapable of being objective (some truth to that). I am automatically placed in the “just another pushy mom" category. When professionals only see me in that light my words have no value. It’s up to me that change that. When I don’t, they remain the “experts” and I am a bug to squish because I am not considered credible.

3. "Parents are Experts" we are the best experts for our kids. We know our children better than anyone. That's the position we have to take and that's the role we have to prepare ourselves to play.

2. "Facts not Feelings" - no matter how right we might be, just saying so is not enough. Proof - not just our conviction - in the form of records of events, outside evaluations, logs of daily activities are our ammunition to fight for our kids. These are the tools of the expert parent.

So again, thanks for the lessons. Because of these experiences I still keep records and they have yet to fail us.

Note to myself and others:

  • Notes, these are the things we can do. My ledgers gave me power in a world where I so often felt powerless. Keeping records is something I can do, it is something that does make a difference. It is so empowering.

  • No worries: Don't worry if the notes do not seem important at the time just keep track of the days.
  • Make it a habit: Keeping records is a good habit to get into because we need them not only for education and treatment, but to track allergies and drug interventions.
  • Get Everyone Involved: I had Nicky's teachers or aids fill in his daily ledger for me too. They would tell me how his behavior, his aids and give me little details. All I had to do was to tell them "I really like to know about Nicky's days, and since I can't be here can you give me a little note every day". Most were happy to do it. When I had questions or I wanted them to know something about his care I would send them in writing in our little ledger. Before long I had a history, which was usually not needed for battles, that I could use to improve Nicky's care.
  • Encouragement: I've gone back and read some of them and it was a great way to see how far he had come. Sometimes, because I see him everyday, I forget how much we have accomplished. Reading the ledgers reminds me how much I have to celebrate!
  • Way too much: As Nicky has gotten older there have been many times when I just can’t remember things that I need to know to help with his current progress. I often can’t remember what was in a program, or when his language began to get more spontaneous, when we tried something and it didn’t work. Gosh, I can’t even remember all the things I have forgotten and then used my notes to go back and build a history, so we could work on his future. These notes seem to help forever.

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