66: Power Through Community

Power Through Community with Jane Milrod | ADHD reWired


with Jane Milrod, CHADD instructor and coach

A certified instructor of CHADD’s Parent to Parent program, Jane Milrod visits to tell of raising and finding support for her two children with different types of ADHD. From struggling with bad advice and obtaining IEPs to starting her local CHADD chapter, training other parents to be knowledgeable advocates, and the benefits of helping one another to gain knowledge and power, Jane establishes just how useful CHADD, its training programs, and the ADHD community, can be.

About Jane Milrod:

  • A lifetime advocate for ADHD, Jane started a local CHADD chapter in Princeton, Mercer County, New Jersey, which was named Affiliate of the Year for 2009–2010.

  • The diagnosis of her two sons with ADHD spurred her on to advocate all the more intensely for awareness and knowledge of the disorder.

  •  Jane is certified by CHADD to teach their Parent to Parent family training program, seven week educational course.

  • She is an ADHD coach with certification from the American Coaching Institute and the ADD Coach Academy.

Jane’s Journey:

  • Struggling herself at a young age, Jane was often extremely impulsive, saying off-topic things during school and acting hysterically in serious situations.

  • Despite her initial struggles, Jane later found a fast-paced hectic job that complimented her hyperactivity.

  • “If you ask me to do one thing, I can’t do it, but if you give me a hundred things to do, I can.”

  • Jane’s oldest son remained undiagnosed until after her younger child was born. He was later found to have an inattentive presentation of ADHD along with a speech and language delay. On the other hand, her younger son was on the hyperactive end of the spectrum.

  • Her older son was initially admitted into a special education program at a young age, which Jane thought went very well. When it came time to receive an IEP (Individual Education Program), however, Jane was denied one and told that her son was ready for general education. Jane objected, but without knowing that she could challenge the decision, she ultimately didn’t question it.

  • Years later, in fifth grade, Jane’s son had yet to be approved for an IED, though she did manage to have him qualified for a Section 504 plan.

  • Retiring from her busy job to focus more on her children’s development, Jane also became co-president of the PTO. Despite qualifying for the 504 plan, she was not allowed to be a part of the special education PTO division. After trying to then create a PTO dedicated to those with 504 plans, she was ultimately unsuccessful.

  • During this time, Jane received a packet from CHADD and was overjoyed.

  • Entertaining the notion of starting her own CHADD chapter, she called up Trish White, the director of Partner Services for CHADD, and began meeting that May.

Jane’s CHADD Chapter:

  • At their first meeting, Jane’s CHADD chapter had about fifty members.

  • They began an “underground” list of trusted care providers in the area. It is important to be able to find quality care from people that know what they are doing.

  • However, Jane felt that keeping some of this information so secretive was odd

  • Wanting privacy and secrecy, other parents would ask that Jane not let others know they had a child with ADHD.

  • Jane: “Everyone should feel free to get what they need for their children. There’s no shame in this.”

  • They developed an internal wiki for the group to use and edit so as to be able to reference the information they found and knew.

  • In June of that first year Jane and her friend Katherine McGavern trained to become Parent to Parent educators under CHADD.

The Parent to Parent Program:

  • CHADD trains participants in a multi-day “marathon” for hours at a time.

  • While at the training, Jane learned for herself how valuable stories of personal experiences are in teaching the content.

  • “You can know everything, you can read every book, but until you hear the stories of other people – fellow travelers – that’s when it lights up and there’s this retention. . .”

  • By conducting the Parent to Parent class twice per year, their CHADD chapter has built up a cohort of extremely knowledgeable parents.

  • Parents will enter the program feeling defeated, angry, and guilty. They leave with a focus on making sure their child’s needs are heard and supported while being able to advocate much more effectively within their schools.

Influence and Change in Schools:

  • Through communication within a larger body of informed, knowledgeable parents across the county and outside of just their school system, Jane was able to glean knowledge of the different IEP and 504 processes exist within each school district.

  • One child who was extremely talented at mathematics, but who struggled to hand in his homework or show his work on tests, was receiving straight “F”s and unable to receive an IEP or 504. By looking at alternate means of testing him, he was able to receive the accommodations he needed and then began receiving “A”s and “B”s.

  • Another school required outside testing in order to receive an  IEP, which was an unusually high bar to set. Through the information their CHADD group had, alongside friendly legal help, the requirements for that school were lowered to more reasonable levels.

  • Teachers have even provided, through informative discussions, what each group needs in order to be most functional.

Parents, ADHD, and Schools:

  • Many parents with ADHD may be unaware of the effect their own ADHD is having on their children.

  • Kids with ADHD often have parents with ADHD due to how genetic the disorder can be.

  • Parents of children with ADHD will often have to become experts about a topic they may have never wanted to be an expert in.

  • Eric: When I help out other families as a school advocate for their IEPs, I am totally professional and focused. However, when it’s my own son, I make sure to bring in other help to accommodate for the extra emotional factor.

  • The added emotional factor of dealing with your own children can throw off one’s logical thinking and ability to understand a situation. Even if it’s not an expert, it’s a good idea to bring in another person to provide an alternate perspective.

  • Recording school meetings is also a good idea for parents with ADHD – make sure to provide notice a day in advance.

  • Parents with ADHD should tell their school district ahead of time about having ADHD and let them know how the recording of meetings helps with their processing.

  • Ideally, you have a collaborative relationship with your school. At the end of the day, though, it is more of a business relationship and it’s important to advocate for your child.

  • Bringing notes that list and describe your objectives for a meeting can be useful.

  • Jane would often bring a sheet of best practices for her son to school meetings and discuss which accommodations could be made at the school and which ones she might have to look externally for.

Collaboration and Community:

  • Jane: You need a guide for this. You have to be with your people.

  • Jane thought initially that she could handle everything on her own, and now regrets not seeking help from others sooner so that she could have, in turn, helped her son at a younger age.

  • By participating in the CHADD Parent to Parent program, you are able to meet so many people working with the same problems. Through that community and the knowledge gained therein, you are learning how to better have a happy, peaceful, home.

  • In a similar vein, while the Parent to Parent program does offer online courses, Jane recommends attending the sessions in-person.

  • Jane: It’s through community and connections with other people that the greatest end results arise, not with the information alone.

  • “There’s suffering when you’re alone. And when you come togther, there’s sunshine, there’s light, there’s lifting.”

Jane’s Call to Action:

  • Jane: I’ve run this CHADD group for ten years. You can do it too.

  • “Go to the CHADD website, write to Trish White, and open a CHADD group. It’ll be the greatest thing you ever do.”

  • Or, if you want to be an expert who helps parents with schools, train to be a Parent to Parent trainer.

  • There’s nothing like doing a job that not only changes individuals but also impacts many people’s lives and makes them feel better about themselves – there’s nothing better.

Various Strategies and Tips:

  • To help himself remember his original goal when moving from point “A” to point “B,” Eric will sometimes sing a song about his goal, then repeat the same short phrase over and over again.

  • Jane will sometimes make use of a similar strategy, but use an established song as the basis (e.g. “Happy Birthday”).

  • A strategy learned by Jane in her Parent to Parent training is to only ask a child to do one thing and then ask them to repeat it to you eye-to-eye in order to stick in their minds from an expressive angle.

Products, Services, and Other Links:

Random Question Round:

  • If you could create a new invention, or improve upon an existing invention, what would it be?

  • To Eric: If you could either have the power to fly or be invisible, which would you want to have?

  • If you were able to meet with the U.S. Secretary of Education for only one minute, what would you tell him?

  • What does your ideal day look like?

Find and Contact Jane Milrod:

Other information:

  • Go to coachingrewired.com to let Eric know if you’re interested in joining the next ADHD reWired Coaching and Accountability group, which is most likely starting in early May.

  • Eric is collecting videos describing people’s experiences with CHADD. If you are currently involved with CHADD, record a video however you wish (horizontally, please!) of you describing your relationship to ADHD and what CHADD does for you. Send it to Eric via Facebook, Twitter, or email here: [email protected].

  • Help CHADD, an ADHD organization dedicated to improving the lives of those with ADHD through useful research and support, by donating to their fundraising campaign here: gofundme.com/oneof15m.

  • Visit erictivers.com/audible for Carolyn D’Argenio’s list of her top Audible.com audio-book picks, complete with preview links.

  • Connect with people virtually using Eric’s favorite video conferencing and connectivity platform, Zoom, by visiting erictivers.com/zoom – the basic service is totally free.

  • If you want you hear your question or comment on a future episode, go to erictivers.com/adhdrewired and look for the comment form, or click on the yellow button for either “Be a Guest” or “Record your question”.

  • Are you looking for a coach? You can schedule a free 20-minute consultation with Eric. Go to erictivers.com and click the blue “Schedule an Appointment” button

  • http://www.chadd.org/

  • Northern Illinois chapter of CHADD

    • Third Monday of every month at 6:45 PM

    • Grayslake, Illinois

(CHADD does not endorse this podcast)

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http://www.audibletrial.com/ADHDreWired

ADHD reWired Coaching and Accountability Group

The 10th season of the ADHD reWired Coaching and Accountability group is now full. If you would like to join the waitlist go to CoachingReWired.com. The 11th season of the group starts on January 8th. When I have details on early registration, I will let you know!

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