{"id":134230,"date":"2022-09-14T19:00:47","date_gmt":"2022-09-15T00:00:47","guid":{"rendered":"https:\/\/gigisplayhouse.org\/madison\/?p=134230"},"modified":"2022-09-14T19:04:12","modified_gmt":"2022-09-15T00:04:12","slug":"advocacy-and-ieps","status":"publish","type":"post","link":"https:\/\/gigisplayhouse.org\/madison\/advocacy-and-ieps\/","title":{"rendered":"Advocacy and IEP’S"},"content":{"rendered":"

GiGi\u2019s Madison Guest Blog by Playhouse Mom and Board Member Sarah Berndt<\/h3>\n

Here we go\u2026 again! Back to school<\/h2>\n

If you\u2019re a parent of a child with Down syndrome, who is approaching school age, you\u2019ve likely heard about the IEP process, and if you heard about it on the Internet\u2026 well, the Internet can be a scary (and wonderful) place.<\/p>\n

As a special needs parent you don\u2019t 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.<\/p>\n

Addi, first day of school ready!<\/p>\n

 <\/p>\n

\"\"<\/a><\/p>\n

Since the moment Addi was born, we\u2019ve been advocating; there are some days where everything feels like a battle \u2013 there are doctors\u2019 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.<\/p>\n

 <\/p>\n

Addi is talking more and more each day, but is still considered non-verbal and although I\u2019ll shout from the roof-top about how many signs she knows (thank you, Amina Grace Speech & Language Program<\/a>!), there\u2019s still something really scary about dropping your child off, and knowing that they can\u2019t\/won\u2019t fully be able to tell you how their day went, when you pick them up.<\/p>\n

 <\/p>\n

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\u2019t go well. Through no fault of the program, really, just a series of events that felt like cosmic disaster.<\/p>\n

 <\/p>\n

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\u2019t 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\u2019t do it. So, we pulled her out.<\/p>\n

 <\/p>\n

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.<\/p>\n

 <\/p>\n

First year, \u201cMeet Addi\u201d page created for her IEP Team<\/h3>\n

** Canva template<\/a> shared by Lindsay Filcik, of the \u201cMy Incredible Ivy\u201d Facebook page.<\/p>\n

\"\"<\/a><\/p>\n

 <\/p>\n

Addi received one-on-one services, through her IEP, at the elementary school her brother attends, since she wasn\u2019t enrolled in a daycare setting or attending a pre-school. We couldn\u2019t have asked for a better\u00a0experience. 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.<\/p>\n

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.<\/p>\n

<\/h3>\n

Second year, \u201cMeet Addi\u201d page created for IEP Team<\/h3>\n

\"\"<\/a><\/p>\n

 <\/p>\n

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\u2019t? Who would make sure she was safe, in addition to learning those important fine motor skills and developing her speech skills?<\/p>\n

 <\/p>\n

I requested meetings, sent e-mails, stayed up way too late making elaborate, full-color, laminated visual schedules and first\/then boards. Special needs\u2019 Moms know. By the time school started, I felt pretty good, but still nervous.<\/p>\n

 <\/p>\n

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\u2019m being honest, it\u2019s that last part that had me crying happy tears.<\/p>\n

 <\/p>\n

Addi and her new school friend!<\/h3>\n

\"\"<\/a><\/p>\n

 <\/p>\n

I\u2019m not sure the anxiety will ever really fade away\u2026 but it felt important to write about this win. I\u2019m not na\u00efve enough to think that there won\u2019t be many battles to come. But today, I\u2019m grateful that this process has been an unexpectedly easy one. Fingers crossed for the upcoming \u201crespiratory season!\u201d<\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

GiGi\u2019s Madison Guest Blog by Playhouse Mom and Board Member Sarah Berndt Here we go\u2026 again! Back to school If you\u2019re a parent of a child with Down syndrome, who is approaching school age, you\u2019ve likely heard about the IEP process, and if you heard about it on the Internet\u2026 well, the Internet can be…<\/p>\n","protected":false},"author":242,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1537,1487,1543,1544,1499,1515],"tags":[905,23,1195,1524,1519,336,1545,1522,22,1039,1525],"class_list":["post-134230","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-down-syndrome","category-iep","category-parents","category-self-advocacy","category-speech-therapy","tag-community","tag-down-syndrome","tag-downsyndrome","tag-family","tag-friends","tag-gigisplayhouse","tag-iep","tag-learning","tag-madison","tag-nonprofit","tag-parents"],"_links":{"self":[{"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/posts\/134230","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/users\/242"}],"replies":[{"embeddable":true,"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/comments?post=134230"}],"version-history":[{"count":0,"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/posts\/134230\/revisions"}],"wp:attachment":[{"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/media?parent=134230"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/categories?post=134230"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/gigisplayhouse.org\/madison\/wp-json\/wp\/v2\/tags?post=134230"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}