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.

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.

The back to school blues

So the kids are in their third week of school and both Anna and Dominic have had their ups and downs. Anna is adjusting to her inclusion class better than I hoped but she's already had several incidents with throwing things, yelling "idiot girl" (her favorite angry phrase), pinching another student, and hitting the teacher. They take her to "room 300" to cool off, have a sensory break, and try to regroup. I think she spends all afternoon in the special ed environment. She hasn't brought any homework home yet and I don't have a good sense of where things stand academically at the moment. I'm sure the teachers are still getting a handle on where each student's strengths and weaknesses are so I'll give it more time. Anna regularly asks to go home and go to the nurse and has had a few days of crying jags.

Dominic claims to hate school already. He is a tough kid to teach, I really feel for his teacher. I was hoping that being in the TAG class this year would challenge him enough to help with his impulsive behaviors but so far he is really sticking out. I got a note from his teacher this morning:

"Dominic is struggling both in and outside the classroom. He knows my expectations and I can really see him trying hard. He has good intentions every day! He is a little more immature than the some of the other students in first grade and his choices toward other students are setting him aside and causing him to have acceptance issues. He screams at other students when he does not get his way. He grabs objects from others and has a hard time working in a group. When redirected by a teacher he will physically and verbally throw a fit, stopping class instruction. Yesterday he was very disrespectful to the PE staff. He often times calls me "Hey" instead of Mrs. M___ and absolutely must get the last word in. Now, with all that said, I adore Dominic! I do not think at this time he needs behavior intervention. Some children take longer to adjust as there is a huge difference between first and kinder. Dominic and I are talking things through and discussing alternate choices. He is a delightful boy, he has great ideas and is a great addition to our class family. For now, let's just keep in touch about his behavior. I'm usually pretty detailed in the daily folder. It may not seem like it but we are making progress. If you have any questions just let me know. I really think Dominic will adjust and be just fine."

I really like her tone and how she handled my concerns. I also like her optimism! But Dominic has been exhibiting these behaviors since he started preschool at age 2.5 and was actually asked to leave two preschools before we found one that would work with him. He was diagnosed with ADHD two years ago but the psychological testing we had done also showed that his attention and focus is fabulous when engaged with stimulating subject matter. He is much better than he was at this point last year but it is breaking my heart to hear him talking about not having friends. I worry about so much with him... how smart he is, how he has to have everyone follow the rules, how impulsive he is (and loud!), and how Anna's challenges affect him emotionally and socially. Her needs take up so much of my attention that I worry I'm not doing enough for him.

After we get Anna's anxiety under control, we're going to start visiting with a behavioral therapist again. Both of them need help and I'm overwhelmed. I'm using the Incredible 5-Point Scale to help Anna with her anxiety and Dominic with his volume and anger. I have a very clear reward system in place with stickers for chores and good choices. They earn time for the fun things they like and that gets taken away when poor choices are made. I try to be consistent and follow-through... yet these notes home come nearly every day and they are both so unhappy. Some days I don't feel like I'm doing a very good job, yknow?

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.

Rough week

Thursday afternoon, the phone rings. "Hello, this Holly," I answer. "Hi, Mrs. Thomspon, it's Mrs. C, the assistant principal. Anna has had another really rough day and we are required to report to you what has happened." My stomach sinks, and I feel deflated.

Again in math resource, a meltdown. It started with Anna tapping some blocks on a table. It was disrupting the small group. The teacher attempts to redirect reminding Anna that the manipulatives are used as a tool not a toy. She continued to tap the blocks then started banging them. The teacher warns Anna, then she just escalates. The teacher had to removed the children from the room (again), call for help (again), and by the time Mrs. C got there, she had... and I quote... "destroyed the room."

I exploded. "Destroyed the room? That is very strong language. What exactly do you mean by destroyed the room?" I could feel my pulse beating in my throat. Well, she backpedaled, no property was permanently damaged. But any item within her reach was thrown. She had even upended a table and chairs. I was horrified. First that my usually sweet little girl was this enraged and second that the teacher had been unable to prevent this level of destruction and rage. I felt like saying, "WTF???"

I got angry. I admit it, I was mad and embarrassed and wanting to blame someone. So I first got angry with the teacher. Maybe she wasn't recognizing Anna's triggers and intervening in time. Historically, this particular class and this particular teacher have been a problem for Anna. She has a behavior chart that follows her around throughout the day; she can earn up to 3 apples per subject and if she gets 20 or more apples at the end of the day, she gets to choose a prize from the prize box. Looking over this chart for the year, you can see that Anna has good days, earning 3 apples in all subjects except math. So it makes you wonder.

As I continued to talk with Mrs. C, I also mentioned that at Anna's ARD last month, math was the only subject where Anna did not make any signficant progress. This is definitely an academic area that is extremely challenging for her. That got me thinking... maybe it's the subject, not the teacher. Maybe it wouldn't matter who was teaching math to Anna, she would struggle with it. If something is difficult to grasp, it would be hard to stay motivated to perform in that subject.

Feeling a little chagrined, I mentioned this thought to Mrs. C. I offered to come observe Anna in math to see if I could spot anything that could be done differently. But Mrs. C pointed out that all week last week, Anna struggled in all areas, not just math... math was just the tipping point. We did see similar behavior at home. She would get fixated on wanting something unreasonable, we'd say no, she's get angry calling us stupid, throwing things, being completely oppositional. She refused to listen, go to timeout, do anything we asked, etc. She even hit me on Friday. She is in crisis. She is crying for help.

I called the endo's office Thursday after getting off the phone with the school. I finally got a few answers about Anna's blood work but no real answers. Her TSH is elevated, her prolactin is elevated. Her abdominal ultrasound showed her to be in pre-puberty. They want to repeat some labs next week then we see the endo on 4/13. I don't think her hormones and body chemistry could be causing these major behavioral incidents. We talked briefly about the Risperdal... should her dose go up? Is she overmedicated with the combination of that and the Lexapro? Is she actually bipolar like we've been wondering since she was 3? Have these been bipolar mood swings and rapid cycling? In the car on the way home from school, Anna was raging at me because she wanted to see a girl in her class. I had to pull over and put her in the back row of the van because she was throwing things at me while I was driving and kicking the back of my seat hard enough to make me jerk. I stayed totally calm and dispassionate while I moved her. I ignored her. Within 10 minutes, she was back and normal. ???

(I have to also mention that Thursday's folder brought TWO notes home for Dominic for bad behavior, both requiring student and parent signature to review expectations. Sigh.)

Then after those two phone calls, the math teacher calls. She is lovely. Concerned, appropriately worried, and wanting our input. The usual strategies are not working to help Anna. (Yeah, we can relate... we're experiencing that at home as well.) I feel guilty for blaming her. It's hard to trust that the teachers will like Anna when she is being so hard to like. I want to protect her. I also feel embarrassed by her behavior and feel it's a reflection of my parenting. I want to explain away her behavior, to have it make sense. But I also want to hold her accountable. In the end, it doesn't matter what is causing this acting out... it is unacceptable and cannot be tolerated.

This weekend, Curtis and I talked a lot about Anna. Is she being bratty and can control her escalating behaviors? Is she out of control? How do we hold her accountable? We kept with consistency... she lost privileges, she went to timeout, we praised good behavior, etc. It is so hard sometimes, especially when we don't know what is causing these dramatic mood swings. Everyone on Anna's team at school is worried. Sometimes these shifts precede a seizure or cluster of seizures. Is she neurologically off? Is it medication related? Is it bipolar? Is it hormones? Frustration? Should she see a psychiatrist? Is it that Anna and I moved back in a month ago and she is having a hard time with that? A combination of these? WHAT???

There are no answers. No one knows. No one knows what she has or how to best to treat her. We just deal with each symptom that is screaming for priority at the moment. I hope we are doing right by her.

Calls

This morning the children's hospital called asking that I bring Anna back in for another blood draw. Apparently they outsourced some of Anna's bloodwork from the February MRI visit and they are missing a cortisol level. After our visit with the geneticist last week, I called the endocrinologist twice to find out what the "highly abnormal" blood test results were and they kept saying they were waiting on one more test to come back. I guess it was never drawn or the results were lost, I'm not sure. So I have to make Anna fast tomorrow morning and take her in for another blood draw. Ugh, poor thing. She gets nearly hysterical and I hate putting her through that. Well at least we can get the genetic blood tests done now instead of in April... I have the orders for the Fragile X DNA test and the fibrillin DNA test so I'll take those in with me. I wonder how long we're going to have to wait on the cortisol and the genetic results. The endo doesn't want to talk to me until she has "the whole picture"...

I also received a call this afternoon from the assistant principal at the elementary school. Anna had a meltdown in math resource and Mrs. C had to intervene. When she got to the classroom, Anna was lying prone on the floor and there were books and papers strewn about the room. The other students had to be removed. Anna refused to go to the processing room, so Mrs. C took her to the office. She had to have a timeout but kept having to have it restarted for getting up. She kicked Mrs. C 5 times in the shin, hard enough to bruise. She was calling the staff and students "stupid" and being mean, belligerent, non-compliant, and hostile. Sigh. What is going on with her?

Behavior

We have a new behavioral specialist working with us through Integral Care (formerly MHMR). Her name is Kathy and I'm really impressed with her. She came to the house last Friday and did an intake interview with me... she was so thorough! Three hours later, I think she had a good handle on what Anna's challenges are and what we are looking to get out of our time with her. Initially I had wanted a behavioral specialist to help Anna and Dominic get along better... Anna is constantly rejecting him because she is afraid of him. He is loud, unpredictable, and causes her to be on guard all the time, anticipating the next boo-boo or screech. As he gets older, this gets better and Curtis works with him coaching him how to lower the intensity around Anna. At the same time, I hate that he already feels a sense of responsibility when he does cause a meltdown in her. Anna and I are continuing to live at my mom's house, 2 doors down from our house, while Curtis and I figure out how to put our marriage back together. What has been interesting is that both kids have had big developmental gains living in separate houses. Both kids are more independent, more competent, listen better, and overall seem happier. Sigh. What does this mean for our family?

Anyway, Kathy really helped narrow our focus to create some concrete goals. Kathy is going to observe Anna at school next week and she was also here on Monday for an observation. First off, she said that in a typical family, an 8-year old girl and 5-year old boy would not be getting along or playing together all the time. So to expect a socially-challenged, play-skill-delayed child to want to engage with her brother is just unrealistic. What we should be focusing on instead is helping her self-manage her anxiety and stress. These skills will help her more in a variety of settings and situations, help her be less dependent on me, and help her in the future as she gets older and the stresses get more complicated. So how do we do this?

We are already doing a lot of behavioral supports in the home. But I need to be more consistent with them, such as using the timer to increase independent play and using the sticker chart with rewards for positive behaviors and chores.

Kathy suggested social stories... where we create short, homemade books that we can laminate and have Anna carry around. Each social story can be about something very specific, like going to the grocery store. We use Anna's picture in it and review it with her before the outing. First we identify the stress... awareness and acknowledgement of the behavior, then we give her the language (stress looks like, sounds like, feels like) and triggers, then the strategies for coping (take a break, set a timer, reward, etc.). I think these will really help with specific, targeted behaviors during predictably stressful situations.

She also suggested videotaped interactions where we video Anna to show her the anxious behaviors to start to teach her to recognize them in herself. Then we give her tools for coping. Anna loves watching herself on TV, so I need to charge up the camcorder!

Kathy recommended some books, which I've already ordered from Amazon. These include:

~Don't Pop Your Cork on Mondays!: The Children's Anti-Stress Book by Adolph Moser
~Incredible 5-Point Scale -- Assisting Students with Autism Spectrum Disorders in Understanding Social Interactions and Controlling Their Emotional Responses by Kari Dunn Buron
~Building Social Relationships: A Systematic Approach to Teaching Social Interaction Skills to Children and Adolescents with Autism Spectrum Disorders and Other Social Difficulties by Scott Bellini

To build Anna's relationship with Dominic, we start by setting up some playdates with an older girl or two (and we have the perfect girl in the neighborhood, she is mature, sweet, and patient with Anna) that have a timed structure with a beginning, middle, and end. Once Anna is comfortable and engaged with this level of play, we introduce Dominic into the play for a short time. Hopefully, she will be willing to play once she realizes that it's only for a set amount of time.

I'm feeling optimistic about helping Anna. We are still giving the Lexapro a try though I'm not sure I'm seeing a signficant difference in her overall anxiety level or coping. I'd love to get her off of the Risperdal since it's caused so many other issues... I'm thinking that if she's not anxious and stressed all the time, she won't be as aggressive so she won't need the Risperdal. Though we forgot to give her the morning dose of Risperdal last Wednesday and she was not a happy little girl. She's getting big enough that her hitting hurts.

Anna's MRI and other testing has been scheduled for next Tuesday, February 23rd. We have to be at the hospital at 5:45 am. *Yawn.* I really appreciate any positive thoughts and prayers you can spare. We had an incident this weekend where I thought I saw some seizure activity and it is just so yucky. It's been since the 4th of July last year for any seizures, I hate that even after all this time, I'm still on guard every minute.