Story sharing is such a valuable way to share common experiences, learn, and develop, and can also be a very cathartic way to heal as well. And what I love the most about sharing our stories with others, is that it invites others to connect with us. The key thing though, is that the story needs to be shared. We can’t keep our stories to ourselves if we want to experience this magical exchange.

Two such wonderful ways of sharing through Project 8p, is to participate in the community questions on Facebook and to join the “Share What Works” calls.

So far this year, we have had some great topics of conversation going and I have personally been amazed at one thing in particular; No matter how unique our children are, we tend to see some unmistakable patterns and similarities weaving through our community.

Topics shared so far range from current educational concerns, services or supports within the school system, and IEPs to available beneficial programs for our 8p adults. If you haven’t had the time to participate in the conversation, make sure you scroll through the community page and get involved!

With the Share What Works call in February about Education for our 8p children, the discussion centered around the school/therapy balance that so many families are struggling with these days. Some families prefer to send their 8p children to therapy in the morning then school for the remainder of the day, while others prefer the opposite. What are your thoughts? How do you manage your school days?

The March SWW call featured a guest speaker, Catherine Whitcher, M.Ed., Master IEP coach.

Basically, Catherine helps parents and teachers become IEP masters themselves. This, as I know from personal experience, is no small task.

She reviewed the basic reason for having an IEP: to prepare a child for further education, employment, and independent living through free and appropriate public education based on the unique needs and unique skills of the student.

As I was listening to the call, the overwhelming thought that kept coming back to me was “I wish I had her around for me when my child was still in school!”.

However, because I know that this is such an important topic for parents around the globe (even though each education system and process differs from country to country), I wanted to share my biggest take-away points for you here. However, I highly suggest that you take the time to listen to the recording and take advantage of the resources Catherine so generously is sharing on her web site.

Tips to Master the IEP Process

  • Get clear on the top 3 goals to focus on before the end of the school year to best prepare for a good start of the next school year (especially if there are changes in staff, school, or board).
  • As a parent, ask “How can I help you help my child?”
  • Sometimes focusing on the basics is a good thing.
  • Ask the support staff what they need to accomplish our goals (advocate for teachers to get the tools and resources they need to succeed for your child).
  • IEPs are not meant to be perfect; they should be fluid as we learn more about what works for our child’s unique needs
  • Question for the IEP team: How are the service minutes being met?
    • Remember to consider quality over quantity
    • Important to differentiate between school-based and clinical-based therapies and services
  • Question: What curriculum is being used for my child?
    • Worded carefully, as an example: “I am going to be using some books at home for my child… What curriculum is being used so I can base my purchases on that system?”
    • Helps to advocate for your child’s teacher to get the support materials needed in the classroom
  • Parent input or parent educational concerns section on the IEP
    • This is where you have your voice as parents!
    • Everything and anything you have concerns about needs to be in writing in this section of the IEP!
  • What do you do when you get push-back on your requests?
    • Remember, you need to be an EQUAL member of the IEP team. Therefore, you will need access to ALL the information which pertains to decisions being made for your child.
    • Put ALL your requests in writing and ask for justifications for their refusals in writing.
    • Ask to see the policies that are in place that support their “no” (this ensures they are not simply saying “no” to parents out of habit).
    • Ask what data is being taken for each goal (and what method).
  • Keep in mind that having all good days at school is actually a red flag.
    • We all have both good days and not so good days
    • What isn’t being talked about? What are they keeping from you? You have a right to know exactly how things are going in your child’s day at school.

In the end, the top reminder that I really appreciated about the talk was the advice on how to slow down what seems to be predetermined decisions being made for your child that you may not support completely. Ask the IEP team to:

  1. Show their data to support their decisions
  2. Show their policies that are already in place that support their decisions
  3. Have it all written down! And that means you write down all your questions to them, and they need to respond in writing.

I look forward to seeing more of your interaction on the Facebook groups and the Share What Works program throughout the year!

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.