Wednesday, April 6, 2016

Day 4. Year 6.

Well I did the first 3 days without falling behind in posting. That's something. ;) 

It's been a rough week so far and I'm not really sure why. Maybe it's just trying to get back into a groove post-Easter and post-spring break. Maybe it's just that overwhelmed feeling you get when writing your to-do list is going to take so long that you have to put writing a to-do list on your to-do list. :)  Or maybe it's the fact that we started this week off with a 4 hour IEP meeting. (which will be continued later this month because we had to leave to get Vicki off the bus after school). I can't tell you how many of these we've been to over the years or how many more we will be attending in the upcoming years. If it's a particularly challenging year we meet almost monthly for something - whether it be for an IEP (individualized education program), ESY (extended school year), triennial (where we meet every three years for a re-determination that Vicki is still eligible for special education services) , a BIP (behavior intervention plan), or whatever else is deemed necessary. No matter how many times I've been in these meetings, they never get any easier. I still feel sick to my stomach days leading up to them. And, honestly, I think the reason I am still so exhausted is that it takes a few days for me to rest up after, rest up mentally, emotionally, physically. My husband and I always attend these meetings together. And it's hard to do because he has to take off so much work for Vicki's doctor appointments. But it's important. Vicki needs us to fight for her. 

I think it's rather ironic. How much communicating parents of a child with autism have to do to get services for their child who can't communicate. Sometimes I get so tired of talking. (Gasp!) You wouldn't think so reading these posts.... :) But I do. It's hard. It's hard to find the right balance of everything when you step into the ring. I mean meeting. 

I enter the ring armed with a cup of coffee, a pen and my notebook, oh, and my amazing husband by my side. We start up bouncing around a bit. Warming up. I smile. I crack a joke. I try to make people feel at ease. I tell a personal story about Vicki. I compliment a good written report when I see one. 

Ding- ding- ding. Round 1 over. More discussion. Rounds 2, 3, and 4. And then we all start to sweat a bit. Jabs are thrown. From both sides. Ding-ding- ding. Round 5. Round 6. We pause. We re-group. We go back for more. And then the hard punches start being thrown. I have my Kleenexes ready.  I try not to, but I can see it coming. My voice cracks. I get emotional. And I cry. 

Then more punches. I fire back. I will stand up for my daughter. I will demand that she is armed with what she needs to be successful. Ding-ding-ding. Round 7. Round 8. 

I'm not sure how much more I can take. I know I need to be strong for Vicki. But sometimes I don't even see the punches coming. And I'm not prepared. Sometimes I can't even see straight. I get confused. I'm not sure which way to turn. I don't know who to trust. Ding-ding-ding. Round 9. 

My heart bleeds for my baby girl. I know Vicki better than anyone. I am best equipped to fight this fight for her. But sometimes I feel like I am not strong enough, Like I have lost before I even step into the ring.Ding-ding-ding. Round 10.

Sometimes I don't even know what I am fighting for. I know I am fighting for Vicki. But I don't know what will serve her best. I'm the one who knows Vicki better than anyone and I don't even know what I should be doing. That scares me. And I get so tired. So emotionally drained. So beaten down. Punch after punch. Meeting after meeting. Year after year. 

We had to stop this fight. But we will finish it. And then we will ask for another fight. And then another. Because Vicki needs us. She deserves to win. She will win. 

I want so badly to talk more personally about these meetings. But I won't. I just wanted you to know about the fight we fight every day. I'm so glad you are here to cheer us on. To cheer Vicki on. V for Vicki. V for Victory. 

Don't you want to watch Rocky now? :) 




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