Advocacy and IEP’S

GiGi’s Madison Guest Blog by Playhouse Mom and Board Member Sarah Berndt

Here we go… again! Back to school

If you’re a parent of a child with Down syndrome, who is approaching school age, you’ve likely heard about the IEP process, and if you heard about it on the Internet… well, the Internet can be a scary (and wonderful) place.

As a special needs parent you don’t just get to worry about sending your child to school for the first time, you get to anticipate mountains of paperwork and hours long meetings, in hopes that your child will receive the therapies and supports needed for them to be successful.

Addi, first day of school ready!


Since the moment Addi was born, we’ve been advocating; there are some days where everything feels like a battle – there are doctors’ appointments; endless therapy appointments; hours spent on hold with insurance and trying to untangle what your insurance will cover, versus Medicaid, CLTS, etc. So, when it was time to start thinking about pre-school, I went to my favorite place, the Internet, to prepare for battle. The IEP process is intimidating, and I can tell you, there are more horror stories online, than reassuring ones.


Addi is talking more and more each day, but is still considered non-verbal and although I’ll shout from the roof-top about how many signs she knows (thank you, Amina Grace Speech & Language Program!), there’s still something really scary about dropping your child off, and knowing that they can’t/won’t fully be able to tell you how their day went, when you pick them up.


Last year at this time, we were preparing for Addi to start an early childhood program where she was supposed to receive some supports. It didn’t go well. Through no fault of the program, really, just a series of events that felt like cosmic disaster.


We had started the IEP process where we live and planned to send Addi to a program in a city nearby (which was complicated and hard), where she would have more peers who also had special needs. I didn’t know what the right thing to do was, what to prioritize (starting an IEP in our home district or having her be in a place with more of her own peers). In the first week, her teacher caught Covid, there was an active shooter in the parking lot, we found out that she would not be able to receive the therapies/supports we had initially been excited about, and to top it off, Addi got RSV, which turned into bronchiolitis. Shawn (my husband) and I felt like our heads were exploding. We couldn’t do it. So, we pulled her out.


We ended up meeting with our school district to discuss her IEP, armored with reports from her doctor and therapists, a list of the signs and words she uses, and my own sheet detailing her strengths and what she was working on, and what our expectations were for the staff who worked for her.


First year, “Meet Addi” page created for her IEP Team

** Canva template shared by Lindsay Filcik, of the “My Incredible Ivy” Facebook page.


Addi received one-on-one services, through her IEP, at the elementary school her brother attends, since she wasn’t enrolled in a daycare setting or attending a pre-school. We couldn’t have asked for a better experience. We felt heard, validated and Addi received wonderful care, in the form of early childhood, OT, PT and speech. One on one. There was no battle.

Fast forward to one month ago, and I was (am?) freaking out. Summer was coming to an end and Addi would be attending a pre-school program, locally, starting in September. She would still be receiving the services she got last year, but in a classroom setting.

Second year, “Meet Addi” page created for IEP Team


The fantastic IEP experience we had the previous year, felt too good to be true. A totally different ballgame in a classroom. Would she have a one-on-one aide? What if she got away from the group; put something in her mouth, she shouldn’t? Who would make sure she was safe, in addition to learning those important fine motor skills and developing her speech skills?


I requested meetings, sent e-mails, stayed up way too late making elaborate, full-color, laminated visual schedules and first/then boards. Special needs’ Moms know. By the time school started, I felt pretty good, but still nervous.


We officially have the first few days under our belt and things seem to be going well. She starts her day with PT, before the rest of her class even arrives. Then, is supported throughout the day by her teachers, an early childhood specialist, an education assistant and her therapists. Her team sent pictures and videos the first couple of days to put my Momma heart at ease, and I even got to see Addi actively playing with a new friend! If I’m being honest, it’s that last part that had me crying happy tears.


Addi and her new school friend!


I’m not sure the anxiety will ever really fade away… but it felt important to write about this win. I’m not naïve enough to think that there won’t be many battles to come. But today, I’m grateful that this process has been an unexpectedly easy one. Fingers crossed for the upcoming “respiratory season!”



Recent Posts


Dash for Down Syndrome Team Spotlights!

Our 2nd annual Dash for Down Syndrome is on April 29th, 2023 at Winnequah Park in Monona. Everyone has their own reasons for participating so...

Volunteers That Bring Unique Experiences

Oliva Marcell- Volunteer and Edgewood College Cutting Edge Student Olivia Marcell- Volunteer and College Student who has big plans for her future Please meet Olivia...

All About Art Explosion 

Starting Thursday, February 16, join us at the Playhouse for Art Explosion! Art Explosion is one of our drop-in group programs, and one of the...


  1. Fran Dotta on September 15, 2022 at 4:42 pm

    Addi is so blessed to have the parents she has and in spite of the mountainous challenges, they all ARE coping really well! Humor helps, too, and Addi does provide a lot to be happy about, too.

  2. Carrie on September 15, 2022 at 8:08 pm

    Great insights from a parental stance! Sounds like Addi has an amazing team and of course an amazing family! ❤️

Leave a Comment