Wednesday, September 29, 2010

An unexpected call and a very long post

I got a call yesterday on my cell phone... a little after 2 in the afternoon. It was Anna's special ed teacher, Mrs. M, who has been working with Anna for the last three years. When I heard her voice, I steeled myself anticipating bad news... I expected to hear that Anna was having a meltdown or something and they had to report it due to the severity. Imagine my surprise when she said that Anna was actually having a good day.

I had gotten a notice in Anna's backpack the day before for a scheduled ARD for October 12th. I looked it over to see why we were having a meeting and it said something about her schedule of services so I signed it and returned it saying that I could attend. I figured they needed to tweak the minutes which happens sometimes and even though it's just a formality for a signature, they have to call the team together for an ARD to make it official.

"Well, you know Anna has been struggling this year."

Yes, I say.

"Even though her behavior is a little better this week, she is still so disengaged in inclusion. She just won't participate. We're concerned about if it's the best place for her. Have these thoughts occurred to you?"

Oh yes, I respond. Curtis and I have talked about it. Ideally, Anna would do best in a small classroom setting with a handful of typical students. But no such class exists.

"We've been thinking about why things are so different this year. There is a big difference between second grade and third grade... in third grade, the academics really take off."

I concur and told her how the psychiatrist was wondering if some of Anna's behavior issues were because she was becoming aware of those differences. We really don't know her level of self-awareness and are hoping the behavioral therapist will help us figure that out.

"Because she is so disengaged and because the material is getting harder in inclusion, we are wondering if we should look at her placement. The academic gap between Anna and her peers has just gotten too large. That is why we called the ARD for the 12th. We want to discuss placement in the FAC classroom."

I immediately feel tears prick my eyes. FAC? (What used to be termed FLS for Functional Life Skills, has now been changed to Functional Academic Class, FAC.) I murmur something and Mrs. M continues.

"Anna would be with Mrs. M_ in the FAC room for grades 3-5. I would still pull her out for Reading since that is one of her strengths and she would continue to join her inclusion class for lunch, recess, and specials. But we feel that Anna's needs are not being met in the inclusion setting and that she would get more support in FAC."

Having had a minute to absorb what she was saying, I felt a great amount of sadness that inclusion was dwindling as a viable option for my sweet girl. I expressed my greatest concern about this placement. Anna's biggest fear at school are some of the other children with special needs. (She has an inappropriate reaction to children in wheelchairs and who are nonverbal... anything from asking multiple questions about their abilities and wanting to baby them to covering her ears, having a meltdown, and shutting down.) She was in FAC part-time in kindergarten, and her fear of Caroline, in a wheelchair and nonverbal, was a daily presence in Anna's life all the way through first grade. Seeing Caroline again in second grade led to the great wheelchair obsession in the fall of 2009... which led to three weeks of interrupted sleep, constant perseveration, pestering her teachers, parents, friends, neighbors, and doctors to give her a wheelchair, finally culminating in an attempt to leave campus while at school and actually finding Daddy's car keys, leaving the house, and starting his car (!) in an attempt to drive to the doctor's office to get a wheelchair.

We are not talking about ordinary anxiety here.

Mrs. M agreed that this is a big issue. She has a student currently in FAC that she picks up after getting Anna in the morning. For the first few weeks, Anna would not even approach the FAC classroom door but now she is coming just inside the room to wait. I suppose we could propose a graduated program of 45 minutes in the room daily for a few days, then an hour and a half, and so on. But then my heart wrenches more. Are we giving up on her? Just writing that makes the tears flow. She was doing pretty well last year in inclusion. She had the material modified for her, she was making slow progress on her IEP goals... well, except in math.

All I can picture now is my little girl, a full year older than her peers since she repeated kindergarten, towering over her friends because of her dangerously rapid growth last year and subsequent hormonal imbalances due to the Risperdal, sitting at her desk completely disengaged from the class as they work on projects. She can't do what they can academically. I've read the reports day after day of her acting out in class, pulling hair, turning the lights off and on, hitting her teacher, announcing that she'd peed her pants so she could go to the nurse, crying. She is not feeling good about school at all. She is desperately crying out for help. I'm heartsick that we only have these two options at our campus because neither is good for her. District-wide I think there is only one additional option and that is an autism cluster class; I think that would provoke even more anxiety for her if there were any kids stimming or making guttural noises.

It can't hurt to ask, so I'll see if there are any other options in the school setting. Maybe she can stay with Mrs. M for part of the day. Maybe she could only go to school part-time. Maybe we should look at other schools, at private schools, at charter schools. Maybe I should homeschool her. Academically homeschooling would be most beneficial. But how much can we expect that she would learn and retain and how much would that help her in the real world? Socially speaking she has potential to continue to grow... with repetition and scripts, she is beginning to expand her conversational skills with the neighborhood girls though she is still painfully delayed from where they are and what they discuss. Ughhhhh. More tears. (There was an interaction with the three girls up the street last week that was really poignant... but that story is for another time.)

When I told Curtis about this conversation with Mrs. M (who recommended we visit the FAC room and meet Mrs. M_ before the ARD), I suddenly flashed on Anna as an adult. Never before I have felt such a clear picture. She will need us. Even her academic and medical team have not been able to tell me what to expect in her future... maybe I've been living in denial or maybe you can call it hope, I don't know, but some part of me felt that she would be independent. Sure, she'd need help, but she would do it her own way.

Maybe she still will.

But somehow, starting with the Rispderal failing last fall, I've felt like we are losing her. The aggression over the summer gave me a pit of dread about this school year. As Curtis and I continue to discuss the ramifications of her academic placement, the bigger philosophical questions come up. What is best for Anna? Is this move somehow an admission that we are giving up on her, just a little bit? Are we overthinking? Perhaps she will thrive and flourish in this other environment, especially if we can manage her anxiety. I don't want to limit what she can do and accomplish. How do we best serve her needs now to ensure the brightest possible outcome for her as an adult? Is it more important that Anna know how to multiply numbers or that she knows how to respect personal space and have appropriate interactions? Academic and social skills are tough to balance and even harder to teach; we know she is capable of learning both given the right environment and circumstances. How do we find that?

Another thing that is crossing my mind is our future, all of us... my own health, and Curtis's too, and the role that Jenny and Dominic will play in Anna's life when we are gone. I feel so protective of her and so deeply connected to her too that it's been hard to make her understand why it's important for her to be separate from me. I want to always be by her side, I want to be the hand she reaches for when she's scared and overwhelmed. I don't want her out in the real world potentially getting taken advantage of. But I have to let go some. I've always felt that we should live an action-oriented life with the goal of an independent adult existence for her but also prepare for the possibility that she will need assistance. We really haven't been doing the latter so much. Reality checks are gut-wrenching.

And if you've made it this far, God bless you. Writing is my way of wrestling with the big issues and I so appreciate the support I've gotten by sharing myself here. I guess our next step is meeting with the FAC teacher and visiting her classroom, then we'll talk about options prior to the ARD. I am glad, in a manner of speaking, for the unexpected call yesterday... this would've been much harder to hear the first time in the ARD meeting. I don't even know what our rights are in questioning Anna's placement. There is much to be done and many questions that need answered. Having the behavioral specialist come on board now is good timing and I hope she can give us some insight on how to help my little girl. I'm a little lost.
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8 comments:

  1. WOW, Holly. First of all, I've never posted on your writing. Amazing. If seems to me that you have full grasp on what needs to be done, you just need to write it out, make a list, check it and double check it. Then check it again. I am not in your shoes. I can tell you this. I learned pretty quick in my dark cold underground, that the days fly by and the future comes everyday, however, simply put, do today, worry about tomorrow, tomorrow. I know you want what is best for your daughter's future, but don't you think, that you could maybe just enjoy now, today, tomorrow, and a stretch here, next week? Get one thing done at a time. There is no doubt that Anna is brilliant, she will figure it out, when she is placed in an area that suits her, not you or Miss_M, or Q, or P. Just Anna.
    I love you. I know you will make the best possible choice for Anna and you and Hubby and the kids. Don't forget to check that list...

    Best,
    Jo

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  2. Good advice, Jo. Very good advice! I have been so mired in appointments and meetings with specialists that I do tend to forget about today, right now, this moment. Today, right now, this moment, I can get Anna to belly laugh by saying "Happy Halloween" in a really funny tone of voice. I'm going to go get lost in play with her. Thank you for reaching out to me, Jo. I think of you often, and Dante too... anytime I find a dime it grounds me to reality and I can live in the present for that moment. I think I'm going to line my home with dimes right now. I am a better parent because of what you've gone through, so thank you for sharing yourself when it was dark in your world. I love you, too.

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  3. Holly, I agree with Jo in principle. There is just so much that one can take all at once. When you try to think too far into the future you will be (and are) overwhelmed. Take it a day at a time. And, if that is too much (as some days are), break it down even further. Go with the recommendation, knowing that, if it doesn't work out, you always have other options - including home schooling. Anna with pretty much determine what she needs. You just need to be sure that the proper boundaries are in place to keep her safe and you sane. Know that I love you and am always thinking of you.

    Love, Dad

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  4. My sweet Hollybear.. you know for a fact how much Anna means to me, so you know I don't say this easily..

    Perhaps though, if we shift our manual focus just a bit, maybe this would be a -good- move? I understand your concerns having read it all but at the same time, it IS a new year, she has made LEAPS and bounds, maybe getting her in a slower pace would actually give her the leg up that she needs?

    Let's shift our focus now to Anna's eyes. What if school seems like a mountain? What if FAC is actually just a little hill that is muuuuch easier for her to climb, then once she's got her leg up on that hill and she's planted her flag, maybe then she can be closer to the top of the 'mountain' and vault over to the top of that.

    Don't see it as "giving up" on her, instead add the important words you left out. "her a leg" Now say it to yourself fully. "I'm giving her a leg up."

    Like your father, I am always thinking of you and here for you, just a phone call away, ignore the distance and remember my heart is always near yours.

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  5. Holly, your mommy instincts will know what to do. I must say, I went back and read your previous post about Anna's school struggles and the thought came to my mind that Anna is fighting an uphill academic battle while trying to learn in an enviroment she is so miserable in. I think getting her more comfortable will open her up for more learning, whether that be at home, school, tutor, etc...

    Thinking of you and sweet Anna!!
    Christina balzly

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  6. Holly, I'm so sorry you're dealing with all of this. I think the most important thing at this point is Anna's comfort and happiness. She won't learn if she's miserable. Megan's in a cluster class and academically it's probably not as challenging as she could do. But she is happy to go to school and happy when she gets home and the teachers report she is an angel and happy when she's there. It gives me a lot of peace of mind. I don't know which of your options will give you that, but I definitely think you have the right to ask, and question. You are part of the team that decides Anna's school placement. You will work through this. If you try something and it doesn't work, then you try something else. ((hugs))

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  7. I really, really, really appreciate all of your perspectives and support. I have been reading and re-reading your comments and taking them to heart. Thank you so very much for helping me stay grounded in the present and reframing how this possible change could really help Anna. We all just want what's best for her and hopefully we can help control her anxiety, aggression, and compliance AND help her learn. I love each and every one of you!

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  8. Holly, I can't offer much in the way of advice. I am having my own inner struggles dealing with the challenges that lay ahead for my Maddie. I don't doubt that a lot of us with SN kiddos have this struggle. The gaps get larger... I had a difficult time coping this week trying to know how to help Maddie with her homework...and started wondering how long it will last before she can't do what her peers are doing. I feel your struggle and know that whatever happens your mom instincts will guide you down the path you need to take. You are a wonderful mom to your wonderful Anna...

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