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Our Laryngomalacia Journey

Our Laryngomalacia journey has been quite the journey.

Motherhood is hard.

Being an adult  is hard.

But I truly have the happiest little boy ever . ⁣

It’s so nice to see how far he’s come. I started writing about our journey with his airway defect when he was a lot younger . I remember feeling lost and had so many worries and fears. We all feel this way when our child gets diagnosed with something we had no idea was coming. We’ve come so far and throughout the journey all I’ve wanted were answers.

These last few days I’ve found myself in the biggest funk ever and I have found myself on a little trip .  My emotions have been a tad on edge . My husband is trying to help me snap out of it. I’m trying too. He says he’s worried about me but I’m totally fine . Just need to continue taking this time for myself to work through it . ⁣

Ever feel like that? ⁣

His annual IEP is coming up and we’ve had ( well me ) meetings with the School District Nurse , Psychologist, Representative , OT, and PT. I’ve also had several different discussions with his teachers who obviously know way more about his progress since they’ve been with him these last two years. They’re truly the best and I honestly feel I’m well aware that our voice and opinion matters here . ⁣

I was given this HUGE packet to fill out. I’m talking at least 100 questions and several different ones for me to fill out . It irritated me . Who has the time to do that! It’s insane . I know . I know I can be a bit too much with my strong opinions and I’m doing my best to be humble and not so judgmental . ⁣

Then out of the blue this “ new “ School District nurse calls me , texts me, and emails me ( in the same 10 min) that she would like to speak to me regarding my sons health . She had a “few” questions and Of course we played phone tag. ⁣

Basically what’s going on here is all adults are also meeting with Elijah while at school ( these last few weeks) and evaluating him so that together we can all discuss his goals and placement for the new year to come . Truth is , I can’t stand the schools that offer the special day classes . They won’t even let me tour the special ed classes until AFTER the IEP so I’ve decided that I’m NOT signing his IEP until I see the school they recommend .

Well once finally got the time to call her she proceeds to ask me a bunch of questions and I can tell she knew nothing about my son nor his file. I got irritated with her . Shouldn’t she already have this info? If she read his file, she would know that YES all of the answers are right in front of her . I understand things change annually but it’s also a shame when I notice the turnover rate and these people get assigned different children all of a sudden. Everything has to do with MONEY. ⁣

Anyway, I’m just a tad upset . ⁣

I’m upset because my district transfer didn’t go through. They accepted my daughter to change schools but NOT my son … ( because there’s no “space “) That’s just not right . I chose to do it the right way and not lie about my address . On top of that, I HATE that private schools around here off NO special ed services. ⁣

So for now , I’m just gonna continue to work my ass off , embrace my beautiful marriage , continue paying off our debt , and hopefully buy a new house so that we CAN go somewhere else where I do like the school district . I’m obsessed with Dave Ramsey’s financial peace plan right now .

On a positive note , I did schedule an appointment with a parents right advocate and I look forward to talking to her and expressing my feelings out loud. ⁣

I appreciate you reading our journey on here. If you have any similar experiences, please share . I love connecting with other special parents on this journey too.

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