It is now Monday night. I wrote this post on Sunday night. I was a little upset and I thought about deleting it - but these feelings were real at the time and it just illustrates some of the challenges with having a special needs child. So, I'm posting it - with today's update at the end.
With just two weeks to go until school starts - there's a lot going on. I'm pretty upset right now, so I'll try to be as understandable as possible.
Change in School Location
Last year (and the year before that) Harlie went to a different school than where she will go to kindergarten. That school used to hold the Hearing Impaired (HI) program. But, the county is trying to establish "feeder patterns" in the special education areas so that kids in the same program stay together as they age. And this is the first year, so you know how that could go.
Sounds like a good concept. But, I have to admit that I was sad. I liked where she was, and she seemed comfortable there. People knew her. And who actually likes change anyway? Especially when it comes to your special needs kid? But, everyone really talked up the principal at the new school and said she had a special education background, so it was a good fit.
We met the principal and toured the school along with a group of HI kids who would be transitioning to this new location as well. There's only a handful. And only a total of four starting kindergarten (two who speak, so they don't need interpreters/instructional aides) and the other two is Harlie and a classmate of hers from the previous school (who do not speak and require an interpreter/instructional aide). All these kids also see a HI teacher (in addition to their regular teacher) during the day as well.
Well, just a few weeks ago I heard that the principal has left the school. And she was only there for two years. And the one before her was there for a short time as well. So, now I know that the school has been through a lot of change in the past few years. And they have not hired her replacement. So, the school has NO principal. And school starts in two weeks.
At the ice cream social on Friday, the resource teacher spoke in place of the principal. It appears that there is no assistant principal, so she will be filling in as the principal until one is hired. So, you know that she will be stretched pretty thin.
Harlie did not need an interpreter/instructional aide last year since she was in preschool (she will require one now, though). But she did get HI instruction from an HI teacher. And she is awesome and is so good with Harlie. She challenges Harlie in a way I cannot. I'm her mother, after all. So, I have been very thankful for this HI teacher. She is also the one that wrote this book that I haven't been able to show you yet (as soon as I get the books, I will show you).
During our last IEP meeting at the end of the school year, the county's audiologist was in attendance. I asked her if Harlie would keep the same HI teacher at the new school. She wouldn't tell me then because she didn't have all the assignments done.
During the summer, I found out that we would have the same HI teacher! YAY! I was so relieved because I really feel that so much of Harlie's success/failure is dependent on the person in this position. I also found out the county's audiologist has since retired. And they are looking to fill her position.
I also learned that they have not filled the interpreter/instructional aide position. At least, the last I heard they had not. And I really want to meet this person and talk to them before school starts. Now that we are going headstrong with the communication device, this person needs to be aware and on board - and educated on the device so she can help Harlie use it during the day. This person will be beside Harlie most of the day and her success with the device is dependent on this person helping her with it at school.
But that person doesn't exist yet. And there's two weeks before school starts. What if they can't find someone qualified? Do they hire anyone just to get a body in there?
Can you tell I'm slightly stressed about it?
And then tonight, I get an e-mail from her HI teacher telling me that she doesn't think she's going to be at Harlie's school after all. And she doesn't know who will be assigned to Harlie yet. What?!?! I can't tell you how much I HATE to lose her support. She has been awesome with Harlie and I really like her. It truly saddens me to lose her!!!
I can't help but feel that everywhere people are going is more important than the places they're leaving. And I hate to sound negative, but I don't really see any evidence of an existing HI program anymore. And if there's no HI staff there - and there's no HI staff at Harlie's home school just a few houses down my street - then why don't I just send her to our home school with her brother?
I'm really trying hard not to freak out right now.
But, I'm already doubting "our" decision to send her to kindergarten. There just seems to be too much transition and instability right now. Are they scrambling to fill these positions and will the quality of the person be sacrificed for a warm body? Ultimately Harlie will suffer if the county doesn't figure things out.
And who the heck do I talk to about all this? Who's my point of contact? And if I don't send her to kindergarten where would I send her?
The only person left for me to talk to about this would be Harlie's kindergarten teacher. And I'm seeing her tomorrow - but only for a pre-screening with Harlie (something she does for all the students) and I think it's only a 15 minute slot. Certainly no time for discussing all this stuff.
You know, I'm just sad and scared. Everyone I was trusting to help Harlie be all she could be is gone. And can I just say how FREAKING hard and scary it is to have to COUNT on other people to help my child succeed? I am counting on the county to provide HI support so Harlie can learn in a way that works with her hearing impairment. The gap between kids who are hearing and those who are impaired only widens with each passing year - unless you intensify the support as soon as possible.
At this current time I do not feel that the support is intensified.
And as if that isn't enough change and instability, Brandy (Harlie's nurse who will be going to school with Harlie most) is pregnant. YAY for her! She is due on Thanksgiving and she's having a girl. At the beginning of her pregnancy, I joked that I thought Harlie needed a little brother or sister (you know, since Brandy is family now). Anyway, while this is wonderful news for her and her husband, it does impact us a bit. Right now the plan is that she will return after a maternity leave. And then I will keep her baby during the day, so she can go with Harlie to school.
But in her absence, we need a nurse to go with Harlie to school. And this scares the crap out of me. I haven't had to find a nurse in over four years!!! I admit - we are spoiled in this area. We have been truly blessed and lucky. But now I have to find someone. That is not an easy task. And it's complicated by the fact that I really don't know when we'll need that person to start (since we don't know when Brandy will have the baby). And if I interview someone now - they could be assigned to another patient and then not want to leave that assignment to work with Harlie, especially since it wouldn't be a permanent position (at least that's the plan). So, I'm going to have to wait until much closer to November till I can really start looking seriously.
And I also know that things don't always go according to plan. And Brandy could have this little girl and decide that maybe she doesn't want to come back to work. And while I sincerely hope that doesn't happen - I would totally understand and respect her decision.
So, needless to say, I'm stressed. More so than I've felt in a really, really long time. BUT - I am trying to keep things in check - because I am really hoping that things will work out. Trying to have faith in the county since they have done well by us so far. Keeping my fingers crossed that these changes will be good when I look back on them later.
Monday Night Update
We had the screening with Harlie's kindergarten teacher today. So, a lot has "changed" since my post from last night.
First - her HI teacher was there and Harlie's main teacher must have realized it would take longer, so we had a longer time slot. And we were able to talk about a lot of this stuff.
Harlie now has an interpreter/instructional aide - and she is someone who has worked with Harlie in the past at her last school. So, she's not a new hire. I guess they had to do a lot of shifting around since the head of the department retired.
And she has an HI teacher, and she said that she is wonderful and will be great with Harlie.
So, it appears that maybe I let my fears get the best of me last night and I don't need to do anything drastic. And there is an HI program, they were just figuring out all the changes. I am normally so much calmer than I was last night. But, I have to say that my emotions are all over the place right now. At this point I just need school to start already so I can get over this "hump."
The screening itself didn't go so well. She wouldn't write her name, or answer questions about what shape was what and barely did the abc's in sign. I should have realized it was doomed from the start...
Both Harlie and Cooper have been fighting some sickness for a couple of weeks. Harlie actually started to get sick right before Tom's reunion and our trip out of town (which I still haven't written about or posted pictures - soon). Harlie went on antibiotics and got better. A few days after the last dose, she started to get sick again. And Cooper's been coughing something terrible for the whole time, too.
They were both at their worst on Sunday (Sunday night was AWFUL and I only got 3 hours of sleep), so first thing Monday morning, I called the pediatrician. They were booked, but squeezed us in at 9:40. We had an appointment with the supply company (who sends a respiratory therapist to our house once a month to see Harlie and check her equipment) at 9:30. And we had to be at Harlie's school at 11am.
So, I called the supply company and told the person who answered that I needed to reschedule our morning appointment for the day. She transferred me to someone's voicemail. I left a detailed message to NOT send the RT at 9:30.
As we were getting in the car to go to the doctor's appointment, my doorbell rings and it is the RT and a trainee from the supply company. Of course, they didn't get my message. When I told the RT, she said that the person I left the message with is on vacation this week. Seriously? That moron sent me to a person's voicemail who is on vacation to deal with rescheduling an appointment for an hour away? Geez. And it didn't help that his voicemail message did NOT say he was out for the week. Grrrr!!!!
I told her we were leaving, she could check Harlie really quick while I got Cooper in the car and then she would have to check the equipment after we left.
Oh, and I forgot to mention that Murphy had a friend sleep over Sunday night and they were running around. And my niece (thank God for Maggie!) came to stay with the boys while Brandy and I took Harlie and Cooper to the doc.
Oh, and I couldn't find one of my flip flops. And that really ticked me off because I am CONSTANTLY picking up everyone else's freaking shoes and putting them away (including my own, of course) and now it's MY damn shoe that's gone missing. Where's the justice I ask???
So, I run and put Cooper in the car and of course they parked in the driveway. Behind me. So I have to go tell the RT to move it. Seriously - the house was CRAZY and this poor new trainee was just looking around. The RT said that she warned the new girl that it was organized chaos. I wish I could agree with that.
Luckily this RT has known us for a long time and is really nice (she's been coming since Harlie was a wee babe) and she was fine with staying after we left to do the equipment check. And while I was running around wrestling Cooper to put his shoes on and continuing to look for mine - I told her to please check Harlie's pulse ox cord which is fraying and probably needs to be replaced.
We finally get in the car at 9:38 - and there is NO way we are going to be at the doc's office in two minutes. So, we're late. Luckily this doc's office is awesome and goes out of their way for us so they were very understanding.
By the time we get back into a room it is 10am and it doesn't look like we're going to be on time for the screening at 11am. So, I ask our nurse if there is any way possible to get us out in time. Which I feel awful asking for since I was LATE.
So, doc looks in Harlie's ear - no big deal. But as soon as she sits up blood is pouring from her ear. This is the second time that's happened after just looking in her ear. I mean, I get that she bleeds easily (since she's on aspirin daily, which is a blood thinner) but what is causing the bleeding? He said he didn't see anything in there and he didn't feel like he scraped her or anything.
So, we wipe her off and with four prescriptions in hand, go running out the door.
We rush home, drop Cooper off with Maggie and the boys and rush to the screening. We were about 10 minutes late for that. I take a deep breath and wait for her teacher. I turn around and look at Harlie and her whole right side of her face is covered in blood. Nice. She continued to bleed for an hour and a half! Which means that her canal was full of blood - and she appeared to not be able to hear a damn thing.
Which is why the screening didn't go so well. Oh, and she's sick. And her tummy was upset and she had to go potty several times. Those things didn't help.
And she was acting super shy with her teacher. Which I totally understand. There was a sheet and it had a Name: __________ slot and then some shapes and then the alphabet. She saw the alphabet and when we asked her to write her name on the line, she started to write the alphabet on the line.
Then when she was asked "which one is the square" she pointed to the circle. Now - I know how parents can be - but I PROMISE you - she knows her shapes!!!
Her teacher had her move next to her thinking that might help. And when she pointed to a shape and said "what is this" Harlie signed square - but did it under the table. Luckily this teacher is sharp and saw it and told us that she thought she signed it (she doesn't know sign - but has ordered a bunch of signing materials for the class and seems really excited about learning it).
Then, when Harlie signed the alphabet (the letters were not in order) she kept her hand on the table and barely moved her fingers. It was as if she were whispering!!! But in sign!!! It was so interesting to watch! And incredibly frustrating!!!
Luckily her HI teacher was there and she told the teacher that she knew that Harlie knows this stuff. The teacher said that this behavior is completely normal - and I shouldn't worry.
Okay. So, that was that. It was noon and Brandy and I were pooped! It was a crazy morning. Then I took Murphy's friend home, fed Harlie, Brandy and I had lunch, and then I made some phone calls. I tried to get an appointment with a local ENT to check out this bleeding ear situation. But her next available appointment isn't until November 9th. Grrrr. So, I e-mailed her ENT in DC to ask him what he thinks about it. I am just trying to avoid going there (DC) because Harlie would have to miss a whole day of school. So, we'll see what he says and I'll go from there.
Tomorrow we are going to Northern Virginia for Harlie's appointment with her surgeon to see if she can stop wearing that back brace and resume normal activity. My fingers are crossed!!!
Whew! This has been a very long post!!! If you're still reading this - you are a good person.
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