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Archive for February, 2011

Let her eat CAKE!!

So, as many of you know Alyssa is potato and soy intolerant. She also cannot have fruit and sugar within 8 hours of each other. This? Means that dessert? Is nearly impossible… delicious dessert? Even farther from impossible. Unless… you have an amazing diva auntie (read miss Julie AKA Birthfree) who loves you enough to send home ground flour to your mommy… and then? when she finds out the day before the cupcakes are to be made that the cocoa isn’t available locally? Well… that auntie uses her lunch break to run safe cocoa to the PO and overnight it… seriously. Overnight cocoa? That’s love right there.

Here’s the kicker… shortening has citric acid in it… so she can’t have that with sugar… but heck! A girl needs buttercream icing! So, I scoured and found an amazing recipe that contained only butter, sugar, flour, and milk! WIN!! Place it atop cupcakes made with all safe ingredients? And… tomorrow? My daughter who has about 90809 things she cannot eat? Gets to eat CUPCAKES with her class!!! The best part?! They are good enough that even those of us who eat “junk” like them!! So she’ll get to eat the SAME snack as the rest of her class!! For the first time ALL YEAR!! I’m so crazy excited for her for this little bit of “typical” on her Birthday… and I’m so crazy grateful for Julie for loving her enough to get me the tools to make it happen :-* YAYAYAYA!!!

AnnnnD? They are even PRETTY!!!!

YAYAYAYAY!!! Yes… I am *THAT* excited about CUPCAKES!!! YAY!!!

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Well, in the grand scheme of things I feel that her IEP was handled amazingly well. One thing I haven’t really touched on is how outlandish her original IEP goals were. They were set by Child Find… without our input… after spending a combined total of 3 hours with my daughter. I still remember making eye contact and then looking at Neil in a way that said “Is she kidding?!” after each goal was read. We told her at the time that they seemed far-fetched but alas they remained. A few highlights were: 1)Alyssa will get her jacket on and off without assistance. 2)Alyssa will drink from an open cup without assitance. 3)Alyssa will identify 50 nouns using 2 adjectives. I mean, I’m not a pessimist. I don’t think she will NEVER do any of these things. However? I think expecting her to conquer all of that in a year was simply setting her up for failure.

Fast-forward to this year. I walked into that room expecting it to be her teacher & therapists as well as the general education teacher. Instead? Her teacher said “I think this is the most people I’ve ever had at an IEP!” LOL! We had the teacher, the aide, the gen ed teacher, the nurse, the nurse that was going to be taking over for her, the OT, the ST, the PT, the director who oversees the PT/OT in the district, the guy from transportation, the vice principal, and myself. It was a full house for certain.

As we set up to begin the meeting I felt the need to preface. Since I’d gone in thinking that everyone outside of transportation would know my daughter I wanted to let them know why I elected for her to not be there. I just briefly told them that although we want to work hard to push Alyssa to the grandest of her abilities that we didn’t deem it necessary for her to hear about all she wasn’t doing. Everyone understood and I felt more at peace to be able to talk in a manner that I wouldn’t have if Alyssa was in the room.

Overall? Everything went swimmingly! The goals they set seemed realistic yet exciting! Everyone was very positive and excited for what the remainder of the year would bring. We are really going to work on incorporating feeding into her daily routine at school which I think she will really enjoy at this point. Speech is working closely with her with the iPad and I got some good information on some apps so that we can utilize the same tools at home as at school.

As we rounded the table and got to transportation he asked if I had any issues. Well, about 2 weeks ago Alyssa had arrived at school covered in puke and no one on the bus saw it happen. Awesome. I had since talked to both of the aides, her teacher called transportation, and I felt like things had been resolved. I said quite simply “Nope. I think we’re good now that the bus aides have the understanding that Alyssa is the reason the are there.” We all talked for a few minutes… and then? It happened. The transportation guy said something to the effect of “While Alyssa is the reason the aide was put on the bus… they are also responsible for the rest of the kids on the bus.” I felt my WHOLE body get warm. I wanted to fly over the table. Every other child on Alyssa’s bus rode the bus without an aide from August until December. You know why? Oh yes…because they don’t qualify for an aide. We had to fight tooth and nail. Typically? I’m pretty laid back. However, transportation makes my mama bear come out like nothing else. These people have my child when I cannot see her. I took a deep breath and replied: “I’m trying to think of a calm way to reply to that statement, but I’m coming to terms with the fact I’m just going to have to be overly blunt with you for a moment. I’m going to go ahead and call BS on that.” His eyes grew to the size of quarters. LOL. I could tell he didn’t know what to say… so I continued: ” There is not a single other student on that bus who requires an aide. Surely I don’t want them neglected if their is an issue. However, I was told REPEATEDLY by several people from transportation that unless there was extenuating circumstances there was no reason for an aide. That the bus drivers are trained to handle non-aide situations. That unless my child was proven medically fragile she didn’t get an aide. Now? The aide is for everyone?” You could feel the air suck out of the room. He said “Well, sometimes although individual kids don’t qualify for an aide they do as a group due to group needs.” Yeah… I *almost* lost it. That was the point my hands started shaking. I looked at the teacher and said “Please… correct me if I’m wrong. However, the other kids have the same driver they’ve had all year? correct? The driver that each of their parents put them on the bus with without an aide for months?!” She nodded. He began to speak. I cut him off. I said “OK. The fact of the matter is? You, as a group at transportation, need to pick one way or the other. The reason I’m calling BS? Is due to the fact that the last IEP we had when the guy found out that there was an aide in the afternoon? He removed the aide THAT DAY before school even had a chance to let out. Obviously these kids don’t qualify as a group.” I was livid. I don’t like having to get to that point. I could feel myself start to shake. At that point the supervisor for the therapists requested that we move forth. It was good. I’d said my peace. He wasn’t in a position to change anything… and really? I did it without crying! WHEE!!

So, the meeting drew to a close with a steady plan in mind. I think the year to follow will be a great one for her. She’s got goals laid out in front of her and she’s got the drive to make it!! I’m so proud of our little lady!

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So… one thing you’ll notice about this blog? It focuses on what we ARE doing not what we ARE NOT doing. I figure the list is shorter. After all it isn’t as if we are jet setting across the atlantic, taking on deep-sea diving, mastering chess, etc etc. There are about a billion things going on all over the world that we are not doing. It’s way more streamlined to make a list of the things we are doing… and honestly it’s far more inspiring and far less depressing. LOL!

I think that the people in Alyssa’s life do a darn good job in rejoicing in all of her triumphs, remembering how far she’s come, and not letting the things she can’t do slow down the celebration of the things she can. However, the reality is that celebrating the amazing leaps and bounds she makes annually, monthly, and even daily? Well… those just don’t get her the services she needs at school. Intro… “whatsheisntitis”… also known as the syndrome that requires us to pick apart what she isn’t, to compare her to the standard kid, and really? to paint the bleakest picture we can. Why? Well, to be blunt… the worse off you are… the better your services are. It seems a bit crazy but as is standard… reality is a bit crazy.

Luckily? These reviews are only biannual. Sadly? They don’t get any easier.  Why aren’t they easier? Well most notably due to the fact that we aren’t lying on this paperwork. We aren’t making stuff up. This? is reality. It’s just… well to us on a normal day? It isn’t so very important how close Alyssa is to acting like a typical 4-year old. What is so very important to us is how close Alyssa is to being her very best. The problem comes in when the IEP rolls around… that isn’t what is in writing. What is written is how she’s measuring compared to the textbook 4-year old. It’s pretty obvious if you’ve met Alyssa that she is not a typical textbook 4-year old.

Now, don’t get me wrong. I’m not in denial every day outside of IEP day. I know that a typical kid Alyssa’s age is running, jumping, talking, etc etc. I don’t live in a bubble or under a rock (although my knowledge of pop culture often disputes that fact 😉 ). I know what a typical kid her age is capable of. The thing is? I also know how very little that the world thought this little girl was capable of. Yes, there was the mourning of the little girl who I thought I was going to have… but the reality? This little girl? Well, she’s cause for celebration way more often than the little girl I thought I was going to raise. It’s a matter of… we knew very early on that we weren’t going to be raising a typical kid, that she wasn’t going to race through milestones at lightening speed, and that she’d have to WANT to work to get over the hurdles in her life. From the time Alyssa was diagnosed Neil and I looked at that as a blessing. I know, again with the crazy 😉 , but what a blessing to be given… to never take one tiny milestone for granted. What we didn’t know early on? Was what this little lady was capable of, how huge of an impact she’d have on the world around her, and how MUCH determination she would be filled with. That? was the surprise of it all. That? is the true blessing of it all! She may not fly through milestones… she may set her own pace… she may do things in her own time… but dangit… she does what she WANTS and she is filled with joy doing it!!

It’s not easy…dangit sometimes it is just plain HARD… but the reality is? God doesn’t set us out on this tough path alone. As much as I know all that I’ve typed … as much as I know what’s on that paperwork doesn’t for a millisecond change the little girl it’s written about… it doesn’t make it any easier to swallow having to look at the “whatsheisntitis.” As I read through the draft of her IEP today I felt the tears fall. No matter how much you are aware of all the legalities it doesn’t stop the mama bear from brewing and making you want to go: “GIVE HER TIME!!” I cried for a bit, reached for my phone and sent a text to a dear friend… with nothing more than “I hate IEPs!”  You know what’s forever amazing to me? How God knows what I need to hear and somehow? who I need to hear it from. After a few texts my soul started to calm. Then Neil got home and in his amazing way listened, spoke gently, reassured me that it was OK to feel what I was feeling, and hugged me until the tears were all gone. As I calmed I got a text from my friend that said “We all need to hear the truth now and again when we feel the walls taller than our faith.” That? Right there? Will stay with me forever. Such an amazing sentiment and so very very true.

The truth about this situation? As much as tomorrow is not going to be fun, exciting, or positive… it will lead to fun, exciting, and positive days. It will wrap our amazing little girl in all of the care that she can possibly have each day. We have decided that she’s not going to the IEP. That will be a first for us. Everyone that is going has met her and interacted with her for a while so we don’t feel like she will be a “number” to them. That was why it was vital to us she go to the first couple. However, we know she’s starting to understand more and we don’t for one minute want her to feel as if we are focused on what she’s not doing. So, tomorrow I’ll go… I’ll deal with a good dose of “whatsheisntitis” and then? I’ll come home to my family and we will return to our regularly scheduled programming. Why? Well… because focusing on what she isn’t doesn’t change who she is … it just takes time away from celebrating it!

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