Friday, May 6, 2016

Jeremy Spoke in Class Today...

Josie didn't get into the school I gushed about in my last post, the Henry Viscardi School.

I'm not going to lie. It was disappointing. They had us go there for two days of evaluations and really sold us on the school. We spoke at length to the medical team about what to do in the case of a seizure. They wanted every detail of her medicines, and so much more. I really think they should consider changing their process. Why not just evaluate the child first? Don't give parents false hope. And then, if you accept the child, bring the parents in to discuss everything the school needs to know about that child. There was more that disappointed me in the way they handled it, but no point in writing about it.

Their reason for not accepting Josie was, "We don't feel this is the right program for her." Ok, so why did you spend so much time telling me how the school has expanded its program to meet the needs for "kids like Josie." We saw a boy we knew from Keep Moving Forward who is no more able than Josie, so we figured, if he is here Josie's a lock. Multiple people at the school said, "Don't worry, she will get in." That shouldn't be allowed.

Oh, am I still talking about it?

I was hopeful because it is the closest school to home. By close, I mean 20 minutes away. I think I was trying to paint Viscardi as the best possible school for her, even though in reality, it might be too focused on academics for her. When they said they "expanded the program," they didn't really. They're just accepting kids with more cognitive disabilities, but they haven't actually changed the program to meet those kid's needs. She needs more sensory and physical attention. I certainly don't want her to just sit there not actually learning because the program is too advanced. I was telling myself it was the only option because I didn't want to consider a school that, while might be much more appropriate, is farther away.

Well, I have to get over that.

I ran into a friend in a store recently and talked about special needs schools with her. I don't see this friend often, but when I do, she often says the one thing that makes me see things differently. I have mounds of respect for her as a mother and when she looked at me and said, "You need to get over the distance." I knew at that moment she was right. She is also the same woman who said one of the greatest things to me a few years ago. When I said to her,"Josie has a long way to go." She responded with, "She has a long way to get there." That changed me, Margaret Higgins.

Fast forward to yesterday. I brought Josie to the Hagedorn Little Village School in Massapequa for evaluations. It was a lovely experience. This school came very highly recommended from several therapists who know and love Josie. It's smaller than Viscardi and I never once felt like we were interviewing for Harvard. The supervisor we met with pointed out all the great things Josie was doing right away, "I love how you look at me when I say your name, Josie." "Oh look how you grab exactly what you want."

They told us all about the school and how the classroom will work. They said we will request that Josie has a one-to-one aide with her all day. I love that.

When I asked when will I know if Josie is accepted? She quickly said, "Oh, she's accepted!"

Don't cry, Nicole. Be cool.

What a relief. I felt this overwhelming sense of opportunity for my little girl. She can experience something new. Something that will help her progress in so many ways. She loves to be around other children and now she could be on a daily basis. I felt very comfortable there.

Oh, but then I remembered the 40 minutes it took me to drive there and the multiple expressways. How I hate merging.

This isn't going to be easy. I've never handed Josie over to anyone. She's always been home with us or with Janice.

She will take a bus. There will be a matron on the bus watching her. The issue is that if she were to have a seizure, that person can't administer medicine. The driver would have to pull over and call 911. I'm wondering if there is a medical transportation option instead. Then again, perhaps her seizures are a thing of the past anyway. Positivity, Nicole, positivity.

I still have questions to ask, and still have to meet with the school district to discuss many things. But, for now we know she has a great school to go to in September. I just hope my comfort level with the long bus ride only gets better.

On another note: two days ago, Josie was home with her speech therapist and Janice. Tanner and I said goodbye to everyone and walked out the front door. A few seconds after we left, Josie said "Mama." I missed it! It's like she was calling me. It was the first time she said mama, although my mom says she heard her say it once before. I've been pretending to leave the house ever since.

She'll say it again. She'll do so many things. She has a long way to get there.


The reason for my blog post title: Josie spoke with her speech teacher, all this talk of school, and the fact that I just saw two incredible Pearl Jam shows at Madison Square Garden. They played "Jeremy." Man, I love that band. I admit, I cried when Eddie Vedder told the crowd about a condition called EB that the band is raising money for. The next day I looked up EB and watched a video about this severe and rare skin disorder. Heartbreaking.
The greatest thing about a band like Pearl Jam raising awareness and money for EB Research is that a cure for EB can also mean a cure for Foxg1 and the 6,800 rare disorders out there. If one gene mutation can be fixed, perhaps they all can.

Thank you Pearl Jam.

1 comment:

  1. Dear Josie and family, thank you thank you thank you for sharing your story. I have just found out (today) my friends daughter has Foxg1 mutation. I want to be like your friend and be there to support my friend as she travels this rare road.
    All my love to Josie, Tanner - an amazing resilient young man and an amazing mum and dad. Xx