Thoughtful Thursday: The Annual ARD

Next week brings Anna's annual ARD meeting. For the uninitiated, this is a meeting that takes place once a year whereupon a vast team of people get together and decide what goals your special needs/special education child should work on for the following year. It can be a daunting, humbling, scary, and overwhelming meeting, especially in the early years. Our ARD meetings usually have 10-14 people in attendance! We started this process when Anna turned three and was placed in the PPCD program (argh, lots of acronyms right? PPCD = preschool program for children with disabilities, ARD = annual review and dismissal). This will be our 7th meeting... the 4th at our current school with her current team. Luckily for me (and through a lot of hard work and research), I have a great team surrounding Anna and there is no friction in the group. I got the first pass of new goals yesterday to review and had a discussion with her Life Skills teacher this morning about them.

I want to take a moment to interject how happy I am that we moved Anna from Inclusion to Life Skills earlier this year. I was scared about this move (remember THIS post?) and was skeptical that it would be good for her. Well, long story short, it has been a good move. She is much happier, her behavior has vastly improved, and she is able to learn and work on her goals.

All in all, the new goals look fine. There are some that are too simple (like in Social Studies, recite the city and state in which she resides) so I pushed back on those and they will be updated, but most of them are fine. Her speech therapist feels like Anna has met most of her speech goals and is now going to focus on social skills. I think her articulation still needs work so I'll inquire about that during the meeting. Her ST is very progressive and is constantly on the look out for new techniques and therapies, so we feel pretty blessed to have her on our side.

It sounds cliché, but it really does take a village to raise a child, especially one with special needs. It's important to have a group of professionals working in the best interests of your child, so as parents it's equally important to advocate for what those interests are. Since Anna is now in third grade and about to turn ten, I've started including her in these discussions. At our last meeting when we changed her placement, I had her join us during the last few minutes. We told her about the plan and got her input and buy-in. We cannot forget that SHE is the center of these meetings, yknow?

I'm glad we're at a place where the annual ARD doesn't beget dread but instead is a relatively easy discourse on how best to help my daughter at school. That's the way it should be.

Happy New Year! and Reflections

Every year on New Year's Day, I get into a cleaning frenzy. It's like I *must* start the new year with a clean slate. I also do this mentally too... taking stock of the previous year and setting some goals for the upcoming year. I really don't do resolutions anymore; there are enough pressures I put on myself where I fail that I don't want to add even more. ;)

I did a big recap on the year yesterday when finishing up my 365 Project, so I won't rehash in detail what the year brought us. I also went through the entire year and picked out my favorite ten photos. I captured so many memories! If you want to take a peek at our Christmas season, I created a Flickr set: Christmas 2010.

I feel very blessed to continue to discover new passions. I'm 41 years old and for the last nine years have defined myself as a mom to a child with special needs. In 2010, I found an artist residing in myself... a girl I didn't know existed. Being a science and math geek my whole life, this has been a startling and rewarding discovery. Creating custom cards for clients, scrapping memories with digital scrapbooking, creating for the best designers in the business, and now exploring photography has brought a sense of peace and balance into my life. When so many of my years have been consumed with doctors, appointments, therapists, specialists, tests, ARD meetings, and worrying about my daughter's future, it's easy to lose sight of my individual self. I'm excited to see what 2011 will bring and I hope to share this journey with my friends and family. Thank you for being such a huge support as I went through the ups and downs of this stressful life and for being a spot of sunshine in my life.

Happy New Year!!!

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.

School is not going so hot

You never want to have an emotionally disturbed child and you certainly never want your child to be unhappy for a prolonged period of time. This has been a hard post to write and I haven't even been sure I wanted to share it but if it helps someone else going through the same circumstances to know they are not alone, then I'll be glad to have hit the Publish Post button.

Anna's special ed teacher called me Friday morning requesting a meeting as soon as possible with the team at school. We met that afternoon.

(On a side note, my digi-friend, Serena, was in town visiting her sister and I got to meet her! She was kind enough to come with me to this meeting and I really appreciated her support. She has a 10-year old daughter on the spectrum so she really understands.)

Sigh. Big deep breath. I have a lot to share. And I'm not sure where to start. And I've been writing this for two three days.

The reports coming home in Anna's Apple Chart have not been good so far (the Apple Chart is our daily communication folder). So I knew that this meeting was going to be heavy going in. Anna's inclusion teacher went first. She said that Anna is not participating in class. At all. All she does is ask to go to the nurse, all day long. If the class is meeting for carpet time, Anna chooses to sit at her desk. She follows her teacher around all day and if she can't have the teacher's attention, she'll start acting out... turning the lights on and off, knocking stuff of her desk, then getting aggressive. She pulled another student's hair last week. Can you imagine if your child came home and said someone pulled her hair? Ugh. The mommy guilt is terrible. Anna has even pretended to wet her pants in order to leave class. The teacher and the classroom is quiet and orderly. It's not a sensory-overload environment. Anna has an aide with her at all times and everyone, including the kids, is supportive of her.

Then the special ed teacher shared that things are even worse when Anna is with her. This is a wonderful teacher, someone who has been working with Anna for three years. We suspect that she is getting the brunt of the behavioral problems because she is Anna's safe person, if that makes sense. Anna is doing everything she can to get negative attention. And none of us know why exactly. We know she is extremely unhappy and hates school. I'm not sure what her motivation is or what her payoff is in acting out but she is doing it very well. In addition to hitting and kicking her teacher and peers, Anna is also being destructive... throwing things, ripping up things, banging things... you get the idea. Tuesday and yesterday were particularly bad and when I read what has transpired I feel nauseated. I took Anna to the psychiatrist Tuesday morning and because she was well-behaved while in his office, he feels that this behavior is not related to a chemical imbalance or medication. Anna is desperately trying to get out of being in class and her ultimate goal is to escape and be home with me.

So we are consulting with a behavioral therapist. Curtis and I meet with her on Monday, then she'll meet with Anna, then she'll come up with a game plan. She'll observe Anna at home and at school and she will also help us with Dominic since he is also having behavioral problems at school. She specializes in children ages 3-11 with severe emotional disturbances including oppositional defiant disorder, mood disorders, autism, and ADD/ADHD behavior problems. She's the one to call when you've reached the end of your rope as a parent, when you've talked with all the doctors and read all the books, and don't know what else to try. I'm handing her the hope that is in my heart tied up in a little box with a pretty bow. Please.

We've been in constant contact with Anna's team this week. It's been 4 full weeks of school and they have not covered one single academic area on her IEP... it's all been behavior management. Of course, I've thought about home-schooling her but everyone agrees that this will not help Anna learn to integrate into the real world as she grows up. She is very dependent on me and I'm not good with my boundaries, I do too much for her and enable some of these behaviors, though not intentionally.

All any parent wants is for their child to be happy. Really, you can deal with illness, academic gaps, social issues... but in the end if your child is happy, you can deal. This... this is unbearable. I ache for her.

I'll keep you posted after we meet with the behavioral specialist. Thanks for your support.

Dear Neighbor

An Open Letter to all Neighbors, Everywhere

Dear Neighbor,

Perhaps you've seen us in passing.. the "special" family on your street. You've seen me struggling with my special needs child, you've seen her run away from me, you've seen her yelling at me or hitting me, and you've thought to yourself, "I don't know how she does it." "I'm so glad I don't have to deal with that." And without a second thought, you walk back into your typical life.

You're a good person and you know you are lucky… you have a beautiful family and healthy children. You've taught your kids to be respectful, to play nice, to "include" us. Perhaps you've even taken it a step further and have gotten to know me as a person and have listened when I talk about my special child.

Here's what you don't know.

When I'm outside with my special needs daughter, your children avoid us. If they spot us coming, they duck behind bushes or run away if they think they have an escape route. Nearly every day, we see all of your children playing together for hours on end; we come to each of your front doors, knock politely (I wait on the sidewalk to encourage her independence) and listen as your children say day after day after day, "No, I can't play right now, I'm busy." I've even resorted to calling ahead of time, programming each of your numbers into my cell phone, only to have the calls go to voicemail and never have them returned.

You don't see my child's face fill with disappointment. You don't see the two previous hours of perseveration where she is asking me over and over again, "Can I go up the street now? Can I play with friends?" You don't see my heart shatter into a million pieces when I see your child stiffen and turn away when we come into eyesight.

I made it a point at the beginning of the summer to talk with each of you about summer plans. I continually invite your children into my home. I engage them in conversation, I play with them. I feed your children healthy snacks and give them something to drink. I arrange play areas in my home… video games, arts and crafts, imagination play… and encourage them to rotate and take turns so that my younger son doesn't feel left out. I listen to your children. They like to talk about all sorts of interesting things. I am interactive with them because my child doesn't know how to play appropriately so I have to teach her. Every minute of every day is a guided interaction. There is no break or down time unless I hire help or rely on family members. Generally speaking, your kids are very patient with my child and understand her quirks. You have taught them well, mostly.

Here's what you don't know.

When they are done playing, they leave abruptly. I don't know why. I am often left with two very unconsolable children and a messy house.

It hurts me (and if I can be brutally honest, it angers me too) that you NEVER reciprocate. You have not once invited either one of my children into your homes for playtime. Only if there is a party or special occasion where all of the neighborhood kids are invited, do we get a knock on our door. I even asked one of you to maybe take my special girl swimming once or twice, she loves the water and is a very, very good swimmer. Yet I see you take the rest of the kids to the pool and never think to include her. Do you have any idea what it feels like to see all the kids running to your house in their swimsuits, carrying their pool bags and pool toys? Do you have any idea what it feels like to hear all the kids playing in one of your backyards as we walk by seeking just one child with whom to play? Do you? Your children spends hours at my home, sometimes the better part of a day. What do you get to do while they are with me?

I understand that she is not easy to play with. There are times when she gets very upset and she is unpredictable. She may have even hit your child ~ out of fear ~ but she has never hurt anyone. I am always watching. I understand that her play skills are limited and that your child might not want to come play with us because they are tired of only playing one thing. I get that and my expectations are not unreasonable. I don't expect that we'll see your kids every single day. It would be nice to have one afternoon every once in while that we could count on. One afternoon. I don't even mind it always being at my house. If you're not comfortable having her at your house, you could ask me to stay or ask to call me if you run into a situation you can't handle.

My daughter has autism, behavioral, emotional, and cognitive challenges. She wants to play. She didn't always want to, she used to be scared of other children. But she does now.

I also have a younger child that is typical. He longs to play too.

My daughter represents all of the special families in your neighborhoods. It doesn't matter if your neighborhood child is nonverbal, in a wheelchair, or has autism or any other different abilities… they are still children. It's such an isolating life as it is; as mothers, we have to fight for inclusion at school, we have to advocate for them with medical professionals, we have to endure judgment when out in public; it would be nice to not have to fight to have a friend.

Reach out and include a special child in your life and your children's lives today. Even if it's for just a few minutes. It could have a lasting impact on someone's heart.

Poison

I feel like I have poison in my blood. At the end of such a long day with such a crappy ending, I have this intense dislike of my daughter's chemical imbalance in her brain and subsequent feeling that I intensely dislike her. Which of course, I don't. But it's hard to tease apart the complex layers of her disabilities, her moods, her perseverations, her aggression, her issues... and see the little girl that is trapped inside of all that. At the end of such a day, I am filled with disgust for myself, for losing patience, for hating this, for losing sight of that little girl that needs me so.

The day ended with me not talking to Anna, with me putting her to bed without her bath or bedtime routine, because I just couldn't take anymore. Her obsession with getting yet another babydoll (she has 21, yes that's right, 21 dolls) is so out of control that we saw her neurologist last Wednesday about it (changing from Risperdal to Abilify in April helped the aggression and impulse control but the perseverations are much worse). My out-of-town relatives got to witness it the weekend before last for Jenny's graduation and it hasn't eased at all since then. The neuro is changing her from Lexapro (which is just for anxiety) to Luvox (which is for anxiety and OCD) but it takes 2 weeks to transition the meds and another 2 weeks to see improvement. I called him today and left a message with the nurse that Anna is getting much, much worse since beginning the switch and if this is what we should expect. I hope to hear from him tomorrow. I also got an appointment, finally, with the child psychiatrist for June 21st. It can't get here soon enough.

I had the idea today that we could make a doll instead of buying one so I took her (and Jenny and Dominic) to Hobby Lobby late this afternoon with the intention of buying materials to make something simple. I was so overwhelmed with the sheer choices and the kids' behavior that I feel like I caved. I bought a premade doll that you just add stuffing too. I hope I didn't make a big mistake in rewarding her neverending behavior in asking for another doll. Although, frankly, if the doll obsession is satiated, she'll just find something else. I then took them to Applebee's... Jenny and I have been on Weight Watchers for over three weeks now and I'm tired of cooking. They have WW point meals there and though we really shouldn't have spent the money, with Curtis and my mom out of town the last few days, I was just too wrung out to cook another meal. It didn't go well.

As soon as we entered the restaurant, Anna wanted to leave. Her fear of babies (there were none present) led to an initial resistance to sitting down. We ended up getting seated next to a huge party... maybe 20 people and it was loud, though there were no babies. She began putting her hands on her ears and asking to leave. Looking at Jenny, who was so looking forward to eating out and looking to Dominic, who was really excited too, I sighed and went back up to the hostess and asked to be seated elsewhere in the restaurant where it was quieter. With relief, we got a booth that was a lot quieter, but Anna still wasn't happy. After ordering drinks, she began clutching her stomach and crying. I feared that she was going to throw up, wondering what in the world would bring on this sudden onset of pain. Right after our food arrived, I got her up out of the booth debating on whether to take her outside for a walk or to the bathroom. I had to really talk her into going to the bathroom because she has a huge fear of autoflushing toliets (we had quite a scene at the Oasis when my MIL was here because they did have those kind of toliets... you'd thought she'd seen a monster, her fear was heartwrenching). I got her calmed down in the bathroom and we went back to our booth. She didn't want to eat and Jenny had just about finished her meal so she took Anna to the car to wait on me and Dominic. I got our meals in to-go boxes and paid the check. Oh well.

After getting home and already feeling pretty defeated, I put the stuffing in the new doll and Anna became obsessed with showing the doll to the neighborhood kids. It was already time for bath so I said no, we'd do it tomorrow. While getting her medicine ready, she went outside without permission. She ended up in the neighbor's driveway, bouncing her soccer ball against his garage. I warned her, gave her to the count of three, and she laughed at me and refused to come in. So I had to stomp over there and threaten her (I took the new doll away for the day tomorrow) and she threw the ball right in my face. I staggered backward, it was a direct hit and it hurt... a lot. She ran toward the house laughing. And I filled with anger, so much anger. I felt like crumpling to the ground, I felt like running away, I felt like yelling at her and being mean. I just became silent.

I had to man-handle her up the stairs and into her room. She continued laughing and calling me "idiot girl" and "stupid-head" and saying that I would not be her best friend, ever again. I stayed silent. I handed her medicine to her and she batted it away. She began trashing her room. I left the room, quietly, closing the door, holding her medicine, and sitting by the door, and I waited. Ten minutes went by, then she opened the door like nothing was wrong. "Are you mad at me, mommy?" I was still so angry, I stayed silent. I led her to the bathroom, helped her wash her hands and brush her teeth and take her medicine, then I put her pullup and jammies on her and put her to bed. I read one book, then turned off the light. I felt awful. I don't think I've ever skipped her routine before.

As she went to sleep, I feel this poison run through my blood. I don't hate her, but I do hate her behavior. She challenges everything I know about parenting and even parenting special needs. Some days, I feel ill-equipped. Some days, I feel like giving up. But of course, in a couple of hours, she will be up again, and she will need me. And I will be there.

Chinchillas, bad days, and a need to whine

Let me preface this by saying that I love my children. I play with them, I teach them, I discipline them, I love them unconditionally. But there are days when I doubt everything I'm doing as a mother. I guess we all have those days.

Saturday was a day for errands and I took Anna and Charlie to PetSmart to buy some dog food, dog shampoo, and new toys for Charlie. We wandered around the store and made small talk with the employees. Charlie scared the cats sitting in the adoption windows so we went to visit the birds and lizards. Our trainer was working so it was nice to catch up with her. Another employee showed Anna the chinchillas they have. I didn't know anything about chinchillas... but boy, are they cute! Of course, Anna starts asking to have one. After ten minutes staring at these cute little creatures, I told Anna we could look them up on the computer at home to get her redirected (not with any intention of ever getting one of course). She behaved well through the rest of the trip, so I made good on my promise and we looked up chinchillas and watched some cute videos on YouTube. She started getting pretty agitated about having one so I came up with what I thought at the time was a good idea. I told her we could find a plush chinchilla online and she could do extra chores to earn enough money to purchase it. Brilliant, right? She thought it was a great idea and started working immediately while I shopped online. I found one through Amazon for just $4 and by Sunday afternoon, she had earned the money. So I clicked "buy" and then the wait began. Estimated delivery date is next Tuesday, May 25th.

We explained to her the process... someone at the store has to find the chinchilla toy, put in a box, call UPS for a pickup, UPS processes it, puts it on a plane, then they check it in here, then they deliver it. I empathized that it's hard to wait. I thought this would be a good lesson in working for what you want and being patient for the prize.

I think I made a mistake.

This poor child is obsessed. She can talk of nothing else. Literally, every conversation is about the chinchilla. It got so bad yesterday that we set time limits with a timer. Wait 20 minutes, then she could talk about it for two minutes, then wait another 20 minutes. The day was endless. She is so obsessed that it kept her awake last night. It was the first thing she talked about this morning. I sent a warning (and apology) email to her team at school letting them know what this is all about. I was nervous picking her up today.

But Dominic comes out first. When I got to school, Mrs. S (the new substitute teacher that is filling in while Dominic's teacher has her first baby) was holding his wrist with one hand and his backpack with another. Uh-oh. I got a sinking feeling in my stomach. She didn't say hi, she didn't introduce herself, she just handed him over with a "He had a very bad day today. I wrote you a note." I stammered an apology with a questioning look and she said that he hit other children all day, had bit another student on the way out of school, and was basically a bully all day. I was genuinely surprised and told her that he doesn't behave like that and I would talk to him. He starts crying, saying that he doesn't want me to take his DS away (which of course I did).

Then I turn around and there is Anna with Mrs. M. She thanked me for the email about the chinchilla and said that it wasn't a big problem but Anna did not have a good day. She was sent to Room 300 (the quiet room, kind of like in-school suspension for kids with issues) after destroying her math teacher's room. She missed a good chunk of time, math, recess, and specials, but was able to turn it around. Anna asks me if the chinchilla came while she was at school and when I say, "no, sweetheart" with sympathy in my voice, she starts crying.

Two kids crying as we walk to the car.

Sigh.

I hate these days. When we got home, I sat them on the couch and asked who wanted to go first. Dominic started making excuses and I got that firm, that no-nonsense, mommy-means-business voice and said, "Stop! Biting is never acceptable behavior. Hitting is never acceptable behavior. You have to control your anger, even when provoked. You won't get everything you want when you want it (the cafeteria was out of ketchup which triggered one of his meltdowns). Remember the anger scale we made? You can't be at a 5, ever. You have to be at a 2. Use the tools we talked about. And take responsibility for your actions." In a very small voice, he said, "Okay, mommy." He is going to write apology notes to the student he bit, the students he hit, and to Mrs. S. I told him if he has another day like today, that his DS would be taken away for a month. That got to him. Then Anna talked but I don't really know what triggered her outburst. She said she was happy about the chinchilla and started throwing things and that it was an accident. I picked up a pillow from the couch and very dramatically threw it across the room. I said throwing is never an accident and that was unacceptable behavior. They are both grounded and have their favorite things taken away for the day.

So the perseveration continues. Now Anna wants me to check email every two minutes to see if the chinchilla has shipped yet. I explained the concept of the tracking number and so now she wants to see if it's on its way. If I'd known what her brain would do with this, I would've paid for expedited shipping.

So tomorrow is a new day, right? Thanks for letting me whine.

The field trip blues...

I accompanied Anna's second grade team Tuesday on a field trip to the zoo. What a marked difference between this trip and the one a few weeks ago with Dominic's kindergarten class. First off, Anna is scared of school busses. The motor noise, the bright color, the exhaust smell, and the sensory input once on board is just too much for her to handle. She has only ridden the bus in the past for a short time in PPCD and when she had to go to kinder the first time across town because our home campus didn't have special education services. So I asked if I could either a) ride the bus with her or b) she could ride with me and we'd meet them there. (It's about a 45-minute drive to the zoo.) She was allowed to ride with me but it required that I sign her out of school, then sign her back in when we returned.

When I first arrived in her classroom this morning, she didn't see me. I was able to quietly steal a seat without disrupting the class and watch her. She looked so typical sitting at her table and looking at a book. After a few minutes she spotted me and the hugest grin washed over her face. That made my heart just about burst. Then it was time to line up and get on the busses; she was assigned to be buddies with two other girls and I was thinking that maybe once we were at the zoo, she would stay with her buddies and I could chat with the other adults.

We got there waaaay before the busses did. And there were at least 6 other schools with multiple classes there. I've never seen it so crowded. We waited in the car until everyone else arrived. Finally we join the class and start the adventure. One of the first things I notice is just how much Anna has grown this year. Granted, she is a year older then her peers since she repeated kindergarten, but this whole mess with the precocious puberty has taken its toll on her growth.



The next thing I notice is that Anna is not interacting with her peers at all. Not even chit-chat or anything. She is sticking by my side or with her special ed teacher. Throughout the entire time of looking at the animals, she only talks with the adults. We were there only about 30 minutes before she started asking over and over and over again when it would be lunch time. So I had a whole hour of "It's not time to eat yet, sweetie… just a little longer." She did eat a few grapes while wandering but she just seemed to want her lunch.

5 minutes into lunch, she started asking over and over and over again when it was time to leave. She sits next to some girls on the picnic bench and there too, she doesn't interact with them. She is worried only about a toddler who is across the table from her. The kids had nothing to do after eating and about 20 minutes to kill before loading the busses. Anna got pretty agitated during this time and wandered off twice then started poking another little girl. I her the girl say, "Anna, stop! I don't like that!" Sigh.

On the way back to school, she fell asleep in the van. The field trip was very stressful for her. I guess it was the sheer amount of children and the school busses too. Because we go to the zoo all the time and she usually loves it.

I spent 40 minutes in her classroom with her before the other students and teachers got back. She was a total sweetie once we were in the class, just the two of us. She read me some books and I was so impressed with how much her reading has improved. Her special ed teacher was telling me that last year, Anna finished her DRA (not sure what that stands for) reading level at a 6; she regressed back to a 2 at the beginning of this school year and now she is testing at a 12!

But overall, it was one of those heart-heavy days for me. Realizing that she is part of the group, but still very separate. The other kids want to interact with her, they want to be a friend to her, but she rejects them. I see her hanging on the periphery, having it cause stress, wanting only for it to be over. This picture really illustrates it to me… how's she's always on the edge of things.



The aggression is so much better now. Switching from Risperdal to Abilify has made a huge difference in that. But the anxiety and perseveration is worse, so I'm going to drop a note to the neuro. I don't know if we have room to go up on the Lexapro or if we need to do something different, but she seems pretty stressed at school. Maybe this is just her normal state though.

Thanks for reading.

Anna update... endo, behavior, and more

Well... yesterday was the worst day yet at school. The principal called me just as I was leaving to pick up the kids and they'd had Anna in room 300 (their equivalent to in-school suspension) since 1:30 or so. I can't even bear to write all the things she did. Let's just say that this child has no impulse control at this time. She knows right from wrong, she knows that she is not supposed to do these things, yet she cannot stop. She is immediately remorseful and sorry. We are now in week three of this behavior. We are having an emergency ARD on Thursday to institute a Behavior Intervention Plan. Yesterday, Anna got a pink slip... a discipline referral which will go into her record. What worries me most is the longterm social impact of her friends witnessing this... will she ever have friends now?

We saw the endo last week for our follow-up to the MRI, ultrasound, and blood work that was done in February. Her MRI was normal, the ultrasound showed that her uterus and ovaries have started maturing for puberty but menstruation is not imminent. Since she just turned nine, we're not going to stop the premature puberty. Compared to her peers, she is much bigger, especially since she repeated kindergarten and is a year older than them. They haven't seemed to notice though, or just don't care.

Her blood work showed some abnormalities. Her prolactin levels were very elevated and that can be attributed to being on Risperdal. Her thyroid levels were also elevated, so they want to repeat those next month and scan her thyroid gland to see if it is undersized or in an unusual location. Her weight held steady so the dietary changes I made at the beginning of the year are working! There were some other minor things but overall it appears that Risperdal has caused her body to grow too quickly, caused some hormonal problems, and is now not effective anymore.

After I got off the phone yesterday with the principal, I called the child psychiatrist's office back that I'd contacted last week... begging the office manager to have the doctor call me. I had written a long email on Friday going through Anna's history, her current issues, and what we are looking for. He only accepts new patients on a case-by-case basis and of course, doesn't take insurance. Sigh. I like him though... he treats Jenny for her depression and he is willing to look outside of Western medicine to see the whole person, not just throw drugs at them. He called me and said he would take Anna's case. Whew! He wants to talk with Anna's neuro since she is so complicated.

I then talked with Anna's neuro via email (I love that he allows this!). He agrees that the Risperdal has stopped working and is going to transition her immediately to Abilify. The side effects should not cause weight gain or an increase in prolactin though I did read that insomnia is common. It's been many years since Anna hasn't slept (the first five years of her life, sleep was elusive, very, very elusive)... hopefully it won't be bad. So we have a plan! YES! New med, BIP, psych... I hope within a week or so we have our little girl back. If this doesn't work, I'm afraid I'll have to pull her out of school. I can homeschool her if I have to but that won't help her learn how to navigate the real world, deal with sensory input, and make progress socially. Isn't it funny that the academics are secondary to what our school goals are for her?

I still need to schedule the ortho appointment to look at the kyphoscoliosis, the cardio appoinment for the echo of her heart, and the thyroid scan to look at her gland. I also need to call the geneticist and see if the Fragile X and fibrillin test results are back. Right now, we're in survival mode and it's one thing at a time. Oh and I almost forgot, Anna's not hearing well. Even the school has noticed that she can't hear, we're having to repeat everything we say and talk in a loud voice for her to hear us... so I have a hearing test and ENT appointment scheduled in a couple of weeks.

Breathe.

An update on Anna

For those of you who don't follow me on Facebook, Anna started coughing Wednesday coupled with a little vomiting. On the way to school yesterday, she coughed a big cough and threw up just a little bit, so I kept her home for about an hour then took her to school late since she seemed fine after that. The school nurse called me an hour later to pick her up because she got lethargic and feelign worse, and she didn't go to school today either. Apparently, the flu and H1N1 is going around our campus and Anna had the early symptoms of H1N1.

After a very restless night and tough day, we got into the ped this afternoon. She does NOT have the flu or H1N1. Yay! Just a garden variety virus. Even if she did have either version of the flu, our ped would not give her the Tamiflu. He said that it causes an increase in the virus across the blood-brain barrier and is causing some psychotic and suidical behaviors in some children, and that would be especially possible because Anna is on Risperdal. Anna does not need to be dealing with that right now! So she would have had to suffer through the illness... thank goodness it's not the flu. Hopefully, she'll make it through this virus with no seizures. She did start running a fever last night and I was able to get Motrin in her right away. So far, so good. Except that she feels miserable, poor little pumpkin.

While we there, Anna was in full perseveration mode about getting a wheelchair. The ped fully supported mommy's position that Anna could not get a wheelchair because she didn't need one. She kept repeating herself, tried to leave the exam room (we had to bar the door), then got angry and violent (she threw her shoes at the doctor). We got an emergency referral to a child psychiatrist and OCD was mentioned. OCD? Very interesting. No one has ever mentioned this label in conjuction with Anna... her behaviors have always been attributed to autism.

I had been trying to find a child psych this last week with no luck. They either don't take our insurance or aren't seeing new patients. One guy wanted us to fill out a patient application just to get on a waiting list to be a patient, then another for an appointment after acceptance! Crazy. So this was good that the ped got to see what we've been dealing with for the last 17 days. Like I said before, you adapt quickly to a new normal and you forget just how altered your reality has become. It's disturbing to see how affected Anna is right now.

Talked to Anna's class and her neuro

I am overwhelmed.

I talked with Anna's class this morning while she was out of the room. Her teacher offered me a chance to do it or the school counselor could've come in, but we thought I might offer a more personal touch. I was really nervous and not quite sure which approach I should take. My exceptional women friends that meet once a year for a retreat (moms I met on iVillage when Anna was a baby and they all have children with special needs) made some great suggestions about how to talk to the kids. (Thank you so much, ladies! You have no idea how much you helped and how I felt your support while I was there today.) I made it very Anna-centered instead of talking about just autism and how Anna is different.

I discussed autism, the five senses, how she was born with it, how it affects her. I talked about the things that Anna loves (SpongeBob, AFV, sports, frogs, baby dolls), things that scare her, things that are easy for her, and things that are hard for her. I focused on how she is the same as them. I talked about how Anna (with more emphasis on Anna's brain) reacts to stress and fear. The kids had TONS of questions. I was there for 45 minutes. I ended the session with asking them to share some things they really like about her and how they could be a good friend to her. I think it went pretty well. They are having a hard time understanding why Anna wants to leave class and come home, why she asks the same things over and over, why she pushes/shoves/hits, why she wants a wheelchair so bad, and why she refuses to work.

I told them we are having a hard time understanding too.

Things have really changed this last week. It's tough to realize when you are in crisis mode with your child, how much it consumes you. All of a sudden, your reality is completely different (again) and when you stop to take a breath, you realize that this is really hard and it really sucks. I can't imagine what it's like to be in Anna's head right now. I can't imagine that she can find any kind of equilibrium. Just when I think I have a handle on how to be her mom, something changes, and I really question my ability to parent her well.

There are days when it feels like I'm juggling so much, I don't know if I can keep all these balls in the air. Between Dominic's challenges (setting up OT appointments and arranging changes in his classroom), Jenny's senior year stuff (I think I'm supposed to meet with her counselor Friday to talk about college planning and applications?), my appointments (did I tell you I found a lump in my breast? I'm seeing my GP tomorrow), Charlie the puppy (he starts intermediate obedience class Saturday), being the SEPAC representative for our campus (I'm supposed to volunteer Saturday for a parent summit and be in a mock ARD), and Anna (the list is too long), and all the regular crap (I bought a laptop three weeks ago that I can't get calibrated properly and have spent hours and hours on the phone with customer service, now I have to prepare to send it in for repair)... I'm so overwhelmed. I know what I need to do... take one day at a time, one task at a time... but actually doing this without this internal churning in my head and heart... well, I'm a little lost in it all right now.

Writing does help me. Sharing helps me. Making siggies and such really helps me. So I thought I would put this all out there and maybe get it out of my head. Sorry for the vomit of overwhelms... I appreciate you reading all of that, lol!

I just don't know how to help her or what to do, and that is just so very sad for me as a mom. I talked with Anna's neuro yesterday and tonight we are starting her on Klonopin for anxiety. She historically hasn't reacted well to most medicines so we are nervous. I'm keeping my fingers crossed that it will help her and that she can start to manage and cope again. As I was leaving the school, one of the teachers said that she was worried about Anna... yesterday she was in Anna's class (the administration now has Anna supervised 100% of the time since she is such a flight risk right now) and said that in a split second of distraction, Anna was out the door. I just wish I knew what's going on in that cute, little confused brain of hers.

Thoughtful Thursday: "retard"

Sticks and stones may break my bones
But words will never hurt me.

Is that true? Some words can hurt. A word is a word; how we interpret it ascribes its meaning. The tone of voice, an inflection, body language, and history all play into how a word is taken. I wish I could rise above hurtful words and recognize they are said in ignorance, laziness, or anger but it’s hard to take the high road when it involves one of your own children.

I have a mentally retarded daughter. Anna is not stupid. She is aware that she is different and it frustrates her that she cannot do the same things as others in such an easy, intuitive way. She has to work hard to meet milestones and she does work very, very hard! She also lives with autism and epilepsy… she copes with many challenges every minute of every day and yet she find joy and brings us joy by just being alive.

As I watch my daughter struggle and triumph with tasks such as reading and addition, hearing the word “retard” used in any form makes me flinch. It diminishes her hard work and her accomplishments. She does not have less value as a human being because her brain processes information differently than mine; nor does anyone with this label. The MR label is a way to get services to help her academically. Because of this label, she can receive instruction in reading, writing, and math in a 1:1 setting within her school district. It’s amazing to see the differences in black and white when she is in a resource setting versus a mainstream setting; she is not able to learn in a typical classroom. I am proud of her and I celebrate when she masters something because I know she worked very hard for that achievement. She has gifts and challenges, like every typical child.

There has been a movement to ban the “r” word… retard. It’s rarely used in an accurate, contextual way… more often it’s used to make fun of something or someone that is stupid or slow, to demean someone, or sometimes in a self-effacing way. I have friends who say, “I’m such a ’tard.” Most of the time, the word used in this manner does not intend to offend, it’s careless and thoughtless, but not malicious.

Quite frankly, I’m a little on the fence about banning the word. The “n” word is not a socially acceptable term yet when African-American rappers use it in their music, you don’t see picket signs around record stores or music stations. So where do we draw the line? Is the word “retard” something that should be socially shunned? I say absolutely yes. Words can hurt. But I don’t know that banning the word would accomplish a goal of inclusion… in fact, I think it would bring about more divisiveness. I wish I could rise above the ugliness of its connotations and not let it bother me, but I can’t. I’m forced to get in its face and take a stand. As more and more children with special needs are identified and integrated, we must embrace them, include them, and teach our children acceptance. It starts with us as parents.

A couple of years ago, my oldest daughter was taking driver’s ed. At the introduction of the car crash videos, the instructors said something like, “Yeah, you better be careful or you’ll end up like the retards on this video.” Jenny stood up and talked about Anna; she said that she doesn’t like that term and prefers cognitively challenged. You know what happened? She got laughed at. Someone even said, “Are you serious?” with a derisive tone and threw a pencil at her. I lodged a formal complaint against the teacher and fortunately the director of the agency was very supportive because has a niece with special needs. But I was dismayed by Jenny’s peers’ reactions and it made me scared for Anna. I was also very, very proud of my Jenny. I can’t imagine the courage that took, but she was undeterred by fear… she was driven by anger.

If someone uses the “r” word in my presence, I think about my little girl and decide to take a stand... I think about Jenny’s bravery, I think about being hurt by ugly words myself over the years, I think about Anna laughing with pure joy over something silly, I think about all of the amazing kids I’ve met on this journey, and I take a deep breath saying something as simple as, “Using the word ‘retard’ makes me uncomfortable, would you mind rephrasing that?” Sometimes I’ll go into more detail, sometimes I won’t. I’ve never gotten a negative response.

I’m not asking that you do the same, but maybe just think about how words have hurt you in the past and see if taking this particular word out of your vocabulary would be something easy to do. Pass this post along to family members who use the word if it’s too difficult to talk to them. Talk to your children.

We can each make a commitment to change, as individuals. It’s start with us… today… right now. Thank you for reading this and thinking about my little girl.