Discussion in 'Fibromyalgia Main Forum' started by angelscutoo, Aug 21, 2008.

  1. angelscutoo

    angelscutoo New Member

    Read your profile and I too spent years advocating for children. I had to retire May 1st this year due to fibro and other health problems and I miss the families with which I worked very much. I supervised social workers who completed home studies for adoption, foster care, and the court.

    In 1997 I started a foster/adoptive support group that has grown and is still going strong. I am still active with the support group as I feel like it was my baby that I loved and nurtured.

    Unfortunately fibro and other problems have taken my ability to continue to pursue my passion for protecting children. Although I care deeply I am unable to do much to help. I do my best to remain positive but this retirment thing is not what I had hoped it would be years ago.

    The loss of a profession you love is such a big loss and when you do the same work for years it becomes so much a part of you.
  2. PainPainGoAway

    PainPainGoAway New Member

  3. Missizzy

    Missizzy New Member

    Thanks for contacting me (and thank you Cindy for bumping!!). It sounds as if you've had a very impressive life/career helping vulnerable children. You are so right in that it is challenging to re-invent and define ourselves.

    Your work with animals, no doubt, gives you pleasure. I know having our motley but precious group of 7 special needs dogs keep me going. You mention that you have a new grand-daughter. Congratulations!! We have 6 grand-babies and they are a never ending source of joy for us. I know, firsthand, that your role as a grandmother will probably not be what you envisioned but never forget that that role is still a vital one. You'll need to be creative in your grandmothering!!

    I'm not sure what your abilities are but I've found that I can still do some advocacy from my bed as well as "actively" raising the four still at home and a large number who are struggling with semi-independence. I know that I strive each day to do something that feels worthwhile. I think you'll find that there's a large number of helper/carers on this board--nurses, caseworkers, therapists, teachers, and so on. We all struggle with the definition of our lives and the sudden changes we've been handed.

    You might find that your caring sense and vast knowledge of the "system" will come in handy here on the board. It feels really good to be able to jump in and help someone when a problem arises.

    It's great to get to know you and read your profile. I'll be watching for your posts.



  4. SGR

    SGR New Member

    Hi, Ladies -

    I'm so sorry to hear of your career loss, angelscutoo. This is obviously a time for you to rest. If you are up to it, I have a question for you and Missizzy. I am at the end of my rope regarding special education services for my two kids. I literally am feeling like they are not going to get the help they need and it is a waste of my precious energy to keep up the fight. I have given up completely with my eldest son who gets by without help, it's not pretty but he pulls it off enough to pass, and am backed into a corner with my younger because he cannot function without help. I have approached the district to try to get more support for him, we are one week away from school starting and I still have not heard from them. Theoretically I am supposed to have an IEP meeting next week, but I haven't heard from anyone. The only thing I have not done is hire an attorney to sue them ($20,000 cost), which seems like a waste of precious resources, because I don't see how this would encourage them to do anything. The only other thing I can think of is keep him out of school until they declare him truant - and then confront them again, again and again. Any ideas? Thanks - SGR
  5. angelscutoo

    angelscutoo New Member

    Each state has their own laws and regulations regarding education. I am not familiar with your state's regs however there are several things to remember. There is always a formal appeal process. Use that process to get what you want!!

    The "squeeky wheel gets oiled" which means stay on them. They must provide an education for your child. They have federal regs they have to follow so if needed go up the "chain of command" which means go from teacher to principal to Board of Education (or whatever it is called in your state)to the Director of Education in your state. If you do not get a satisfactory response then go to the next level.

    Many states also have Child Advocates who are assigned to make sure children get what is needed be it a behavior disordered classroom, gifted services or a classroom for autistic children.

    IEPs are mandatory so call every day to the school or assigned counselor or educator who has the responsibility of setting up the IEP meeting. There are rules about notification etc regarding IEPs. Be nice but firm regarding your expectations for your child. Do not let them talk you out of what you feel the child needs. Ask for testing as needed or therapy such as speech, occupational, or physical therapy.

    Most states have their regs on line somewhere and I would ask them where you can access the policy. If not on-line ask that they provide you a copy.

    Lastly if you are low income you can access legal aid, if it is available in your state, to represent you and they usually go after the school systems pretty aggressively.

    Without knowing you child's specific information this is about all I can think of at this point. Hope this helps.
  6. angelscutoo

    angelscutoo New Member

  7. SGR

    SGR New Member

    Thank you so much. I have been at this for over ten years, combined with my illness, it really is at a point where to save my sanity and what's left of my health I may have to abandon ship. I have used an advocate, she doesn't always show up to the meetings and takes weeks to respond to my emails. They promised me a meeting at the end of the year because I asked for one and then as the time came near I was told they couldn't do it,no one was available, they would see me the week before school. I believe that my son's issue is an inability to understand abstract language and he is a slow information processor. It has taken years and thousands of dollars for me to figure this out. He wouldn't speak to adults for most of his life, and last year blew out of every English class because he could not do the writing assignments. He was put in the resource room two periods/day reading a book and was not given any support in writing other than help in completing non-English class assignments during another period in the sped room. The SLP he was supposed to meet with every week stopped seeing him last November. I'm somewhat familiar with the law, but with brain fog, I'm no expert, but familiar enough to be really angry at their blatant violations. My take away from what you said is that I will call them, I will call the district again and mention that I am concerned that no one has contacted me, again. Thanks and hugs -
  8. angelscutoo

    angelscutoo New Member

    Remember everyone has a supervisor. Sounds like you have a pretty good handle on what he needs... now go get it. You have to push sometimes and if you do so without being nasty but with the intent of getting what he needs and accepting no less, you will get it I think. You may have to make office or school visits to speak to the right people. I once sat at a school for three hours waiting for the principal. They tried their best to get me to leave and return later on another day. I said no I would wait and simply sat in the lunchroom and did paperwork until the man came through the door. I brought him copies of state school policy and I got what I needed for a child. You can do it also. Good luck!
  9. angelscutoo

    angelscutoo New Member

  10. SGR

    SGR New Member

    Wow, three hours?! That's great! You are breathing life into my exhausted, nearly lifeless, body on this issue. I was even told last year that they weren't responsible for providing needed services, and I knew they were, I'm so slow cognitively, combined with my need to have the right information and being unsure what that was, I didn't fight back on the spot. So I will make copies of relevant laws/rules and take it with me. I am feeling significantly better this summer thanks to the Yasko protocol, so hopefully I have a little better chance of standing up to them. It's hard when they don't feel compelled to follow the law and I don't have the strength to be my own attorney. I do the best I can. Thanks for the encouragement, it is sorely needed.

    Hugs -


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