Monday, July 18, 2016

The End of a D.R.E.A.M.?

I remember exactly where I was when I got the call telling me that Lily made it into Pattison's.  The kids and I were driving down Maybank, and we were near this roadside stand where I've purchased flowers for teachers during Teacher Appreciation Week.  I was so excited, and I remember telling Gabriel how she got into the school once I hung up the phone.  And then I got a call back saying that she actually wasn't old enough, but she may be able to get in on a visual deficiency technicality.

Obviously, she had the visual deficiency.

She didn't begin on the first day of school.  Actually, it was about a month later.

And it's been a D.R.E.A.M.

But now that D.R.E.A.M. may be coming to an end.

This is the way I know the story:

Months ago, a letter was sent to the parents of the students saying that PACE was losing its charter.  Whether that is because the district took it away or PACE relinquished it is beyond me.  I've heard one answer from the school and another answer from our local newspaper.  We received a few emails that were very positive in nature explaining that the school would now be called The Pace Center and that a very positive relationship between the school and the district was being formed.

Then I started hearing things.  The first questionable item was a letter asking us to raise $70,000 in a month.  I didn't understand why the school would be asking for this money if the district was paying for the building and the buses, among other things.  Then people started talking.  I first heard about a few teachers and aides not returning.  I didn't question that.  Then I heard that Lily's teacher wasn't returning because she had not gotten her contract yet, and she couldn't risk not having a job.  Turns out, no one has received contracts yet.  Hence, it's not expected that anyone will be returning. . .including the principal.

I'm wondering here:  it might be easy to hire a new principal, or pull someone associated with the school from his or her position to be an acting principal.  Both have happened before.  But the last time I checked, special education teachers were a high needs population of the education profession.  How do they plan to replace these teachers with qualified personnel?  And if you can't find teachers, how do you have a school?

It all just feels very intentional to me-like a suckerpunch.  And I don't like it one bit.

I'm losing sleep, I'm so distraught over this.

When Lily was born, I decided to continue working.  We basically hired a nanny to watch both Gabriel and Lily.  I came home twice a day to nurse.  It was exhausting and very hard on me, but I did it.  And then our nanny got a job in her profession.  Dave and I decided that my staying home would be better.  It beat the emotionally exhausting job of trying to find someone else whom we could trust to watch our kids. . .especially one who cried practically all day long.

Finding people we can trust to leave Lily with is still an emotionally exhausting part of our life.  It's not just worrying about a caregiver staying with her here at home.  It's also about her teachers.  Lily cannot speak for herself, and so it is extremely important that we establish trust with any of her caregivers.  And it doesn't happen automatically.  It takes time.  And it takes a lot of energy.

And here, we are going to have to go through it again.

But the person who's going to be with Lily all day is also going to have to know Lily's cues.  There's a sound she makes when she's about to vomit.  Lily's teachers knew that sound.  Now someone else is going to have to learn it...quickly; otherwise, there is going to be a big mess.

That person is going to have to know her sounds and her expressions.  One early year, Lily was just not happy all day long.  She was crying a lot. . .and she never cries.  The school finally ended up calling me, thinking she was sick.  I came in, and saw that the face she was making was her "I'm in pain" face, and after checking her out pretty thoroughly, I saw that her shoes were too small.  It was an honest mistake, so I wasn't mad, but this just goes to show that you have to know Lily and her expressions to get an idea of what's going on with her.

And I just hope that that person is going to love Lily just as much as Casey and the other teachers and aides love her.  Will that person be willing to come by the hospital to check on Lily. . .four times in twelve days?  Not that it matters, but would that person openly offer to babysit Lily?  What is the depth of love this new person will have for our daughter?

And the school?  If not PACE (or The Pace Center), where?  And what equipment will it be able to provide for Lily?  A treadmill?  Multiple seating arrangements and standers?  A ceiling swing?  All of these types of equipment are part of what helped Lily gain strength and stamina.

As did walking from her classroom to the gym/lunchroom every day.  Is a new school with lots of typical children running around going to be able to allow Lily to get the footage she was able to get at PACE when walking from her classroom to the lunchroom?  Will it be able to keep up the pace (no pun intended) by providing adequate opportunities to improve her stamina, like the treadmill did?

And who is going to administer and attend to this during the day?  Casey was Lily's teacher.  She was coached by the therapists THROUGHOUT THE DAY on ways to help Lily physically, occupationally, and verbally because those therapists were there all day every day.  If I'm not mistaken, in a public school, the therapist comes when she (or he) is scheduled to come, which most of the time is not every day, and certainly not all day.  I could go into the building and speak to any of the therapists when I picked Lily up, even.  I'm not sure that would happen in a public school.

And the nurse. . .sorry to sound needy, but having a full-time nurse who was only having to worry about 30-something children with special needs was a God-send.  If Lily goes into a public school, the nurse there is going to be worried about fevers and insulin shots and inhalers and lice.  If not for the nurse at PACE, I'm afraid Lily would have been in much worse conditions at times.

I could go on and on.  I could talk about the bathroom situation, the air-quality, the condition of the building.  I could talk about the fact that I really don't want Lily to be included in things like library and art and music with a class that may have out-of-control children, when Lily can do nothing to defend herself.

I think I've said enough tonight.

It's just not easy to release control of certain things regarding Lily's care.  But it's even harder to feel like we've lost one of those things that Lily loved so much.  She knows the word "school" and would get so excited when I'd tell her we she was going to school.

Even if the school stays intact, the people Lily (and we) love will not be there.

I'm angered.  I'm saddened.  I'm unnerved.  It's July 18th, and there has been no communication regarding what's going to happen to the school.  I don't even know if I'm supposed to be looking for a place for Lily to go to school.

There's a part of me that just wants to sit back and wait.  I want to fight, but I also want to keep quiet and see if Lily will fall through the cracks, if "they'll" even contact me regarding her schooling.  Based on what's been going on, I wouldn't be surprised if they didn't.

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