Harlie's IEP was at 10am. I was supposed to meet my friend, Emilie, for coffee that morning, but on my way out the door, I realized that Murphy left his lunch box. So, I took that to his school and on my way to Starbucks, I called her to tell her I was running late (not that she didn't expect that anyway). But, she answered and said she was still at home. And she was very upset. She has a daughter with special needs, too. And Anna Cate was having a very rough morning. Anna Cate is nonverbal and Emilie suspects something might be hurting her - but she can't communicate what's wrong. The effort to try and find out what is wrong is truly exhausting. Keep in mind that our special kiddos have lots of other issues, too. So, there are lots of possibilities! My heart ached for Emilie. It's so overwhelming to know that you have to think of everything. Anna Cate is counting on her to figure this out. She's been keeping a log of everything that Anna Cate does to try and see if there is a pattern to her discomfort. And in her house at that moment, I know how alone and isolated Emilie felt.
I'm thinking I just don't share these kind of down moments enough. Even the good days are hard. And the hard days feel downright impossible.
After I hung up with her, I went to Harlie's IEP meeting. I'll summarize - because no one wants those kinds of details.
The minimum number of hours per week that are given at home is five, which is what she received last year. After a lengthy discussion, the number being considered was seven. I said that I just didn't think that was enough. So, I asked for ten. I said that I want to be able to send her to school whenever she gets the okay to go. And right now, if that were to happen, we would be in a difficult spot because where would she go? Technically, she needs to repeat first grade. And she's definitely not ready to be put in a second grade class. But, apparently, there's some rule that says you can't hold a child back twice? I don't know, don't quote me on that. Anyway, I said that we have a lot of ground to make up this year and I don't see how seven hours is going to cut it. So, let's give her ten, and if she catches up too fast, we can reconsider then. ;-)
So, they countered with ten hours, one of which will be speech therapy. I would be happier about it if it weren't for that. I went in there wanting more speech therapy than just one hour per week. Since she was supposed to receive an hour per week last year, and never got it, I was hoping to negotiate more this year to make up for it. And to make it worse, her speech therapist can only come on Thursday mornings, and the two Thursdays after our meeting Harlie had a doctor's appointment and then dental surgery - so no speech therapy for three weeks!!!
That night was the We Haunt Harlie & Friends event at the Children's Museum of Richmond in Short Pump. Lynda did a fantastic job organizing this event. There was pizza, desserts, beer and wine. I think all the kids had a fabulous time. My kids were exhausted when it was over. I don't think Harlie has ever walked/ran that much in one night ever! Her sats were a little low, but there was no stopping her! I did a lot of talking - I was trying to speak to as many people as I could - so I couldn't take many photos. So, this is all I got and I'm totally bummed. I wish I had at least gotten some photos of the volunteer stations (bar, pizza table, t-shirt sales, etc.). After all, if it weren't for all the wonderful volunteers, none of this could happen.
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| Cooper (aka Optimus Prime) and Harlie. |
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| Frostings donated the yummy mini-cupcakes. They were delicious! |
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| Lynda and I. |
Much love,
Christy xo
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