Experienced parents, I need your help!

I am aware that there are many parents who are new to this whole game. It can be overwhelming, all the acronyms, diagnoses, services, etc, etc…..remember?

I am inviting people to post here and share their take on Special Ed 101. What are some things that you or your child found to be helpful? What are some things you wish you had done, or had avoided? Where did you START looking for help?

I hope this will be a useful discussion. Positives and negatives abound, we all know. Please just keep it civil–no personal attacks. And please forward this post to all, newbies and seasoned parents, who might find it useful.

Thanks so much!


6 Responses to “Experienced parents, I need your help!”

  1. Beth Says:

    I think it would be a really great idea for us to list all of the different issues that parents encounter from the beginning (such as a list of acronyms – I remember starting out on this path and with all of the CSE, IEP, etc. squalk I went crazy – bussing, related services, places to file complaints,etc). Then, put together a pamphlet that would reflect frequently asked questions, definitions, responsible departments and their contact information.

    This pamphlet would be kept in all General Ed schools as well as Spec. Ed. locations, and the CSE. The SECOND it looks like a child needs a 504, an IEP, or some form of intervention, the principal, school psychologist, parent coordinator AND the parent would have access to it.

    I think it should also include the basic step by step processes along with rough timelines (those are easy since IDEA spells them out for some of it) to take some of the anxiety and fear out of people just entering the system. It would also be a great idea to introduce a Parent Member at the beginning of the process, rather than during the IEP. They could provide a lot of reassurance during the process.

  2. Andrea Lella Says:

    One of the biggest challenges I faced as a parent of special needs children was getting them to understand the concept of eating healthy. My kids ALL needed to learn this concept but it was an especially hard lesson to learn for my youngest child who has PDD.

    To help him better understand the concept of good nutrition, I found this wonderful site through the government that REALLY teaches children and adults about healthy living.

    Below are three links. One is to a diet planner. All you need to do is enter your age, weight, height and activity level and it develops a menu guide for you.

    Another link is just for kids and it explains nutrition in a basic way.

    The third link is to a Nutrition Game just for kids. It is very fun, animated and has great sound effects, but best of all, it really teaches the concept of eating healthy.

    With the first site, my son was able to understand the basic food (pyramid) requirements every person needs to be healthy. The lists of food choices made it possible for my child to understand that even if he didn’t like “meat” he could find protein in many other places. Once my son mastered that concept and became proficient at “winning” the game in the third link, he began taking a more active role in planning his own diet.

    In OT, he learned how to cut his fruits and vegetables and mix foods together smoothly. With those combined skills, he now makes the most fantastic fruit salads (with a peanut butter and yogurt mixed dressing) and great veggie snacks.

    Please let me know how you all like these sites and if any of these hints work for your child! 🙂


    Leave a Reply

  3. Laura Cavalleri Says:

    Dyslexic program: My son participated in Lindamood-Bell’s Seeing Stars program in NYC, five weeks, we started June 2nd ended July 4th. Intense! 4 hours per day, 5 days a week, 1-1 teaching, different teachers, Same lesson Repeated!

    It’s Not the cure all for Dyslexic individuals, but it’s the start!
    I had asked his homeroom teacher while in our fourth week in the LMB
    program-the last week of school if she noticed a difference, yes, he was participating more in class.

    I’m looking for parent proof, who out there had their child receive LMB in the past 0 – 10 years can tell if the LMB Programs made a difference in their education.

    You see hundreds of “Dyslexic Individuals” can’t be wrong, It’s the Instructions in educating Dyslexics that needs to change.

    And to support my comment,

    The New York Branch of the International Dyslexia Assoc., publishcation
    Dyslexica Disclourse, Volume 66, Spring/Summer 2008,
    “In the News” – Dyslexia Summit Breaks New Ground in Scotland,

    In April 2008, A landmark agreement was struck among all seven Scottish teacher training universiaties to prepare their students to teach dyslexic youngsters. In New York State, IDA Executive Director Linda Selvin and Board President Jo Ann Simon and Board Member Peter Prager, have already been journeying to Albany to promote the same issue here.

    Recognizing that early diagnosis and intervention are the best ways to help children, the Scottish government has set a number of targets within two years to ensure consistency of educational approach. Sir Jackie Stewart, dyslexic three-time Formula 1 World Championship holder, was present at the summit announcing the initative. Nothing that he left school at 16 “with great relief” to work in his father’s garage, Sir Jackie stated, “Educationally and socially (the Children) are going to be better citizens, because they are not going to be so aggravated and angry about their own inabililites. That frustration can lead to crime and addicition.”

    It has long been known that a large proporation of American youth and adults behind bars have learning disabilities. Consistency in delivering research-based reading intervention has so far elude the American education system. We hope someday soon to hear of a landmark New York State agreement, due to the efforts of the New York Branch of the International Dyslexia Association. Valeria Raymond, PH.D.

  4. fedsped Says:

    Great news, Laura! I’m so glad your son benefited from the L-B program.
    Maybe you could ask to meet with Linda Wernikoff (Deputy for Special Ed services) and present your results. Why couldn’t this methodology be used in the schools for kids who need it?
    Do you think anyone from LB would be interested in doing a presentation for parents here on SI? maybe if there was enough interest they would open an office here!

  5. Nick Says:

    Join a support group that has parents with children that have a similar disability as your child. Try to plan ahead at least a year in advance for
    services or programs that may benefit your child.

  6. fedsped Says:

    good idea Nick, I know that there is usually a Transition Fair held at either Hungerford or another D.75 site. It is full of useful info, not just for D.75 kids but for anyone who has a kid who many be aging out of their DOE-provided supports. I will try to find out when the fair will be this year.

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