8 Comments So Far

  1. Looking at Ana’s hair it is lovely. My mother just started Votrient. Just wondering if we can use hair dye for the strands of grey or colorless shade of white.

    Thanks..

  2. Jackie, We’ve never met, but as a mother, Ana’s story has greatly moved me. She is your gift and you are hers. You are such a smart passionate advocate for your daughter. I pray often for your whole family to have strength and comfort. Warmest regards, Marsha in Virginia

  3. A 504 can have almost anything in it. It is usually monitored by a general education person, often the guidance counselor. This usually means that it doesn’t get monitored, so you, and Ana, will have to do the advocacy. Nothing new, huh?
    Some things to consider….does she need rest room breaks? food? rest? at “non-traditional” times? Will she need tutoring for extended absences…be sure to specify the length of “extended absences”…usually 5 or 10 days. If she is fatigued in the evening, will she need extra days for extended assignments that have YOUR agreement for this extended time? Think creatively…what would benefit her during her difficult times without making her stand out too much? Be sure EVERYTHING gets written out….if it isn’t in writing, it won’t get done and you will have no recourse.
    One of the difficult times will be when there is a substitute teacher since they don’t usually know about 504 plans, so Ana will have to advocate for herself should she need services during that time. High school is a demanding time, physically and emotionally, so think about how her schedule should be arranged…if possible, try to get her less demanding courses in the afternoon and a study hall the last period of the day. This last period study hall may come in handy if you find that Ana is getting too fatigued and want her to leave school early. If your state requires Physical Education classes, then figure out when would be the best time for her…or have a physician excuse her altogether….or put it off until her junior or senior years. PE teachers usually have a “tough it out mentally” and it may make it difficult for Ana.
    I was a Special Education supervisor for many years….and I’m a friend of Janne’s. Please email or call (Janne or Susan De has my number) if you have any other questions.

      • Just to be sure you know, Jackie, you can bring an advocate with you to a 504 meeting. Locally, Dorothy RIchards at the Resource Center for Accessible Living in Kingston 845-331-0541 has this job of helping people navigate the educational system. No charge. And this picture of Anna is stunning!

        • Thank you, Fran! I’ve already been in touch with RCAL and spoke with Dorothy. She offered this (it’s actually $25 to have someone sit in on the meeting with you, but you can ask them to waive the fee – which I wouldn’t do). She gave me the info to get this started by advising me to write a letter to the school principal and hand deliver it, then make sure I got a copy with a date stamp on it (I did this when we met with Ana’s guidance counselor).

          • Hi, We’ve obviously never met but I recently came across your blog and have been praying for your daughter and family. You have received some great comments about a 504 especially the one about advocating for what Ana needs and that the teachers follow it. Another option would be an IEP (Individualized Educational Plan), under OHI (Other Health Impairment). This type of support has more legal force behind it and because of the seriousness of not following it you and your daughter will have less effort to enforce it. Also, at least in my state, the school receives extra state funding to support an IEP that it doesn’t for a 504 plan. We had both at different times based on my daughter’s health. The 504 was helpful but it seemed I was in a constant advocate position which I didn’t need while also trying to provide and get the best medical help for my daughter. I hope that helps.

  4. Jackie, your family is being held in prayer. May Ana retain her strength and remain stable as she continues her journey. Thanks for sharing your thoughts and this gorgeous photo! Ana looks gorgeous!

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