Thoughtful Thursday: Celebrating Stasis

It has been a long time since I've written a Thoughtful Thursday post and quite a while since I've blogged about Anna. The thing is... she's doing well right now. I say that with a whisper in my voice and hesitation in my heart because with her, things change rapidly and dramatically. It's easy to blog when things are rough but finding that appreciation for stasis and celebrating it should be just as important.

The school year started off really badly. Six weeks of misery for her and the staff at school. Countless specialist appointments, endless meetings, daily reports. Changing her placement from inclusion to life skills has made an immense difference. She is participating in class, she has befriended Caroline (Anna reads her stories and gets to push her wheelchair to the bus at the end of the day), she has not been back to Room 300 (the in-school suspension room), and she is happy to be at school. Her body has finally recovered from its premature thrust into puberty last year; changing from Risperdal to Abilify is what turned that around. She hasn't had a seizure in 17 months, a new record. She is on a good cocktail of meds now too. For the first time in ages, she is stable. Stable. Most parents have no idea what a blessing this is. It's easy to take for granted having a happy kid, one who is generally healthy and well-behaved. It's agony to watch your child endure psychiatric issues, health concerns, academic problems, and social missteps. Feeling helpless is the worst feeling... as a mom, your instinct is to do anything and everything to have your child be happy.

stasis |ˈstāsis|
noun formal or technical
a period or state of inactivity or equilibrium.

We're into at least a month of Anna achieving a sort of statis... emotionally, psychologically, medically. Dare I say, there have been moments of feeling normal, even typical, in our family of late. Stability is the core of helping Anna navigate the world. When things are predictable and when she feels safe, she starts to blossom. So even though it seems like Groundhog Day here most of the time, it works. And for that, I'm eternally grateful. So, I want to challenge each of you to think about your life right now. If you are in a zone of stasis, become aware of it. Put some of the memories of this time in a bubble... write about it, take photos, record it in some way. Because the thing about stasis is that is doesn't last. Things change in a heartbeat, regardless if you have a child with special needs or not.

My nephew's father passed away last weekend. He was 39 and suffered a stroke. Curtis went to Ohio this week to be with his sister and our nephew and it's been a profound experience. Our nephew is only 12. Can you imagine having to tell your child that their father has died? Curtis has been helping the family... they've been at his house (SIL is divorced from him) gathering mementos for our nephew and cleaning things out. I got this text from Curtis yesterday morning:

"We are cleaning out his house right now and it is so striking. A life unfinished. Everywhere I look is something half done. It makes me a little ashamed for my procrastination and what people would say of me if I were suddenly gone. Umph, so heavy."

So if you have stasis in your life at the moment, celebrate it. Celebrate the routine, the mundane, the boring. Make today a thoughtful day in your life.

The plan

When we first entered the FAC room yesterday morning, I noticed the overhead florescent lights were covered with blue parachute material creating a soft, blue glow. Four boys and Caroline were around a table, listening to music and playing with instruments. Mrs. M_ came over and shook our hands. Curtis and I met the aides, then sat and observed for a few minutes. The room has many areas, each with the ability to screen off the rest of the room.

Mrs. M_ excused herself from music time and spoke with us. There are nine students total; Caroline is the only girl and the only child in a wheelchair, and she has her own full-time nurse. Some of the boys were in the motor room which is on the other side of the school near the gym. We got to see it... it has a little trampoline, lots of sensory manipulatives, and plenty of toys. We also got to see Room 300, where Anna goes to calm down and turn it around... it's an empty room with a chair. We got to see the garden, where the FAC students care for some vegetables they grow. She went over their daily schedule and some of the tools they use. There are some things Anna will really like and some things she'll struggle with. Some of the boys have behavioral problems similar to Anna. One of them benefits from power walks around campus when he's losing it. They really try to individualize solutions to each situation and child, I like that. Mrs. M_ has a very quiet, calm, and competent manner. We really liked her.

Lunch with Anna went well. They had just returned from a school-wide field trip and Anna was all smiles and full of pride for riding the bus two times without crying. She laughed with me during lunch and didn't seem anxious in the cafeteria. We're trying a couple of new motivational strategies at school and they are working to help her comply and behave, so overall the week was better.

I then met with her special ed teacher, her speech therapist, and her inclusion teacher to talk about the FAC placement and our morning visit. I suggested a graduated exposure program where Anna starts out for small increments of time in FAC, gradually building up. They liked this idea. I told them my main concern was about Anna's anxiety and thought the new behavior therapist might be able to help with this. I hope she gets a chance to visit Anna in inclusion before the transition so she can see how Anna copes with the change and if the anxiety goes up or is manageable in FAC. Taking a deep breath, I also mentioned my sadness that Anna doesn't seem to fit in either inclusion or FAC... needing more support in one and being too high-functioning for the other. They all agreed. I asked if there were other kids like Anna on campus? Nope, she's unique... in fact, she's kind of unique in the district. There are no other options district-wide either. But the gap is just too big for inclusion to be an option anymore, so she will have to go to FAC. I said that we should evaluate again at Thanksgiving and if she's still not making any academic progress and is still having these severe behavioral issues, then we'll start thinking outside the box.

So I've really been thinking. I've been listening to all of you and really hearing you. Your advice, your kind words. My mom has noticed, as have I, that Anna has a different demeanor when playing with J, an older boy that is cognitively challenged, in our neighborhood. She seems more confident with him, more relaxed, more herself. One of the things we're hoping from the behavioral therapist is to get a bead on Anna's level of self-awareness. I'm suspecting that it's higher than we realize. Maybe a lot of her issues this year come from that realization that her peers can do things and learn things and talk about things more easily and it's making her feel badly. So maybe she will feel successful in FAC and things will turn around for her.

You know what is really humbling?

I asked her what she thought. I told her about this plan. After all of these meetings, phone calls, and deep conversations with Curtis and family, I asked Anna. Her reaction? "So I won't have to go to Ms. B's class anymore? Yay!" You know, I'd do anything to make this girl happy.

Thank you for all of your support this week. I'll keep you informed... the ARD is scheduled on October 12th but they are going to start letting her visit the FAC class next week.

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?

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.

Morgan's Wonderland, so much fun!

Though we didn't get to meet Shannon and Mimi yesterday at Morgan's Wonderland in San Antonio (they got delayed then ended up having to cancel), Jenny, Anna, Dominic, and I went ahead as planned and I'm so glad we did! This park is AMAZING!!! Built specially for children with special needs, everything is very accessible and built just for our SN kids. Everyone is super friendly and upon checking in (which I have to mention that you must reserve your time online and pay ahead of time so it makes checking in super fast and easy!), each person gets a GPS wristband. If at any time your child wanders off, there are multiple places in the park where you scan your wristband and it locates each member of your party and tells you where to find them. There is only one entrance/exit, so it is completely safe.

Walking in you notice soft, zenlike music playing. It's so relaxing. There is a huge carousel to one side that has wheelchair accessibility and the staff lets you take as long as you like to get on if your child has anxiety. We actually ran out of time and didn't get to do the merry-go-round. Definitely next time.

We packed a picnic lunch and ate at one of the many areas which had sailcloth coverings. After eating, Anna wanted to push Audrey in the swing so we did that for a little while, then went on the car ride.


This track is so cool! Anna got to drive first and she was so excited! She could steer a little bit and bump the wheels into the center track but mostly it's remote controlled.




Then Dominic got a turn. He had a blast! At the end, he decided to steer with his feet. Can I say I was stricken with a premonition of him doing this in just a scant 10 years with a real car?! Yikes!



We then wandered around one of the many playscapes. Oh my gosh, they have everything you can think of. Slides, swings (I think there were at least 5 types and one just for wheelchairs), teeter-totter things, a huge sand pit area, and even a music park! Dominic had fun there, banging on all of the xylophones. Anna loved the giant seat swing and really stayed on it a long time.



We got pretty hot so we went indoors to the sensory village. Again, anything you can think of, this place had it! It was very interactive and kid-oriented. There were even rooms where you scanned your wristband and it would bring up the child's name on the screen to make the experience very personal! We spent a long time in one of the many rooms there playing grocery store. The kids had fun pushing the buttons on the lobster tank to create bubbles, then they filled up their carry carts with all sorts of goodies. Then it was time to check out at the scanner and register! So much fun!!!






Unfortunately we were running out of time because Jenny had to get back to go to work, so we did a quick walkthrough a few more areas, including Pirate Bay where you can fish, play with water cannons, and operate remote-control boats. They also have a train that goes around the entire perimeter of the park (we didn't get to do this but will next time). On our way out, we checked out the Waterworks exhibit where you can manipulate pipes and walls to make water do all sorts of cool stuff.

All in all, an amazing place. Anna was free to get in and the rest of us were only $5 each. WOW! Thanks for sharing in our fun!

Introducing a new friend, Mimi

On Sunday, we had the privilege of attending a special fundraiser for a special little girl, Mimi. Mimi is 10 years old and lives very near us. She has a rare chromosome disorder called 9 p minus syndrome which causes sensory issues and daily seizures. Mimi's mom, Shannon, is trying to raise money to get Mimi a seizure-alert dog from 4 Paws for Ability. The cost of this service dog is $15,000 and could potentially save Mimi's life. The family has raised $3,000 so far and our family wants to get involved. After their goal is reached, Shannon is going to start a foundation to help other families get service dogs.

When Anna and Mimi met on Sunday, it was an instant connection. Both girls wanted to have a playdate immediately so I gave my contact info to Shannon and was thrilled to hear from her yesterday. Our families are going to meet in San Antonio on Friday to go to Morgan's Wonderland, an amusement park for special needs children. I feel so fortunate that Anna's seizures are so infrequent now and really want to do something to give back all the love that has been sent our way. I still hope that Charlie, our Labradoodle, will alert to her seizures, especially in the middle of the night, but also hope Anna continues this long streak of being seizure-free.

If this story touches you, please consider donating to Mimi's family. Even $5 or $10 can make a difference. The local news attended the fundraiser and covered the story with a short segment: Fundraiser hopes to buy service dog for Austin girl.

To learn more about Mimi, visit her website, Help Mimi. Thank you so much for getting involved!

Thoughtful Thursday: Where are my rosy glasses?

I was typing up a getting-to-know-you questionnaire for CrumbSnatchers since we have some new designers and one of the questions was "Are you a half-full or half-empty kind of person?" You know, I used to be a half-full person. I took pride in being happy and optimistic and tackling adversity head on. I did wear rosy glasses and I liked them! In fact, I rocked them! Do you know how I answered that question today?

"It used to be half full but then life drank it and now it's half empty."

How sad is that!?!

What happened to me? There are days when I just plumb don't like myself. Like today, sigh.

I couldn't sleep last night. I tried. My mind was awake and going into those twisty, dark places. Tick Tick Tick Tick. Toss, turn, my mind would just.not.stop.

When I woke up this morning, I felt like I'd been hit by a truck. A 8+ pain day on the Holly Fibro Scale. Which subsequently led me to be a grumpy, ugly person all day. Honestly, I hate to wallow in self-pity, I HATE it but some days, I just want to scream. Enough! These kids are so hard, my marriage is so hard, my pain and my own health issues are so hard. I'm tired, I just want to lay my head down and sob for a while.

But I can't. And I won't. And it wouldn't be in character either. I don't cry. I really don't. I'm strong.

I know once I get some sleep I'll be much better. It's amazing how much this makes such a difference. Anna needs me to be a half-full kind of mommy. Well, really, my whole family does. So I drag myself through this one bad day knowing tomorrow will be better.

It will, right?

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.

Reflections

It's that time of year when we all look back, take stock, make resolutions, and move forward. 2009 had its ups and downs, and overall I feel very lucky in many ways. I am curious about 2010... I have a sense that big changes will be coming.

2009 brought Jenny to her senior year of high school. It's hard to believe that this time next year she will be away at college. Wow. She has been accepted at all three of her top college choices and I think she'll be attending A&M at Corpus Christi to study marine biology. I am so proud of her and the choices she has made. She doesn't drink, do drugs, or stay out late. Jenny and Chris wear promise rings indicating their choice to wait until marriage to take that next, big step in their relationship. She has chosen such a nice, young man in Chris. He is wonderful and treats her with respect.

Anna has had a very good year. Her seizures are more and more infrequent and she's even made it through a few fevers without seizing. She continues to make steady progress in 2nd grade and really responds well to the smaller educational setting offered to her in Resource. She is currently battling anxiety and weight gain (from the Risperdal) and we are making healthier food choices and getting more activity into her daily routine.

This year Dominic started kindergarten. After a rocky start, he has settled nicely into the routine of school though he struggles with impulse control and hyperactivity. He was diagnosed with ADHD in the summer but after a failed attempt with medication and seeing a child psychologist, it is apparent that he is incredibly bright and probably bored. As he gets more challenging material at school, he should settle down some (we hope!).

Curtis and I hit a pretty major rough patch in our marriage but we are working on it, one day at a time. His capacity for love and change is amazing and I hope we can figure things out so that we can both be happy.

2009 brought us Charlie, our Labradoodle donated by Cheyenne Valley Labradoodles. He has turned into such a good dog. He is eight months old now and has completed intermediate dog training. We're going to take a refresher course in January since we took December off and our goal is to have him certified as a service dog for Anna though it may take us another 12-18 months. We don't know yet if he will alert us to Anna's seizures since she hasn't had one since we got him (that is a very good thing!). Here is a picture of Charlie when we first got him and another from around Thanksgiving.





2009 also introduced me to digital scrapbooking and being a creative team member for AnnaBV Designs and By Becca. They are wonderful ladies with whom to work and I've so enjoyed expanding my creativity and love for digital art. I became an Admin at CrumbSnatchers and really became a prolific siggy-maker there. I have so much fun working with other people's pictures and feel very honored to be allowed to little pieces of art with them. I also had the pleasure of doing my very first photo shoot with an adorable 3-month old baby girl. Now that was fun!

I didn't get to retreat this year with my Exceptional Women friends from the iVillage support boards due to financial reasons, but we are all committed to getting together in 2010. I can't wait! We've become so close over the years and it's nice to spend time with other moms who get it.

2010 will be a year of changes. I will be attempting to re-enter the workforce in some capacity... hopefully working with digital photography and Photoshop. I'm taking an Illustrator class in January and I'm studying restoration and retouching techniques. I love love love what I'm doing now and would be thrilled to find a way to earn money doing what I love.

I hope that each of you who reads this reflects back on 2009 with fondness and no regrets, treasure your blessings, learn from your mistakes, forgive, and love. That is what it is all about. Cheers!

Neuro and endo visits

I first want to start off by giving a big WOOT to Jenny for getting accepted into A&M Corpus Christi as an Undergraduate Environmental Science major in the College of Science and Technology. And she got a second letter just hours later with an acceptance to UT in San Antonio! I am so proud of you, angel!

Last week, Anna had a checkup with her neurologist. Since she takes Risperdal, we have to monitor her prolactin levels and weight since this medication affects both of those. I've also wanted to talk about options for her anxiety. We actually had a prescription filled for Zoloft before she started kindergarten 2 years ago to treat anxiety but within a few weeks of school starting and having an awesome kindergarten teacher, she did not need it. Anxiety has been a constant presence in her life, sometimes manifesting as aggression, sometimes as sadness, and often you will see her rubbing her upper lip, like in this picture when she was just four years old.



Anna has been showing signs of early puberty, so in addition to talking to the neuro about the anxiety, I wanted to talk about the puberty stuff also. We ended up with the nurse practioner even though I specifically asked for the neuro and even rescheduled a prior appointment just to see him. But I was pleasantly surprised... the NP was wonderful. She noticed Anna's anxiety right off and talked about different medication options. A couple of months ago, we went ahead and tried the Zoloft but Anna developed a tic with it... she would blink her eyes shut really tight and do it frequently. This child always has such a weird reaction to medications. So we took her off of it, waited a week, then tried it again. The tic returned. So that med is out. The NP suggested Lexapro so we got that filled last week. When I picked it up, the pharmacist said that since Anna is allergic to Keppra (an antiepileptic drug), she might have an allergic reaction to Lexapro too. But so far, it's going well. It takes 4-6 weeks to build up enough in the system to notice a difference and she is at less than half a dose, so the change may be subtle.

While we were there, I also mentioned the signs I was seeing of puberty in Anna. Having gone through this with Jenny, I was realizing that Anna was about 2 years ahead of where Jenny was. The Risperdal (by the way, this med is for behavior and mood if you don't know, helping with aggression, agitation, and mood swings) can cause prolactin levels to increase which can lead to early breast development. So we've been watching that for a while. Anna's been on Risperdal for over 3.5 years. The NP referred us to see a pediatric endocrinologist who we met yesterday to talk about the early puberty concerns.

The endo was wonderful, I really liked her. I knew that Anna had gained a lot of weight this year but since the neuro's scale is in kilograms, I haven't really been paying attention. I will admit that I have been overeating and making bad food choices in dealing with my marriage problems and that has trickled down to the kids. Sigh. Still, I was SHOCKED to discover that Anna weighed 66 pounds in May and now weighs 92 pounds. She's also shot up several inches. She's at the high end of the chart for both height and weight but the endo was very, very concerned about her weight. The Risperdal causes weight gain. Actually, for Anna, it causes her to be hungry all the time, and all she wants to eat are goldfish crackers, peanut butter, and orange juice. We have to make some drastic diet changes for her and for the whole family beginning immediately. The endo also ordered a bone density scan to see Anna's skeletal age. She suspects that Anna's bone growth will be a couple of years ahead of normal to compensate for the weight gain. That in turn can cause puberty to start early. So Anna got an x-ray of her hand this morning to see how "old" her bones are. The endo also ordered 18 blood tests. Yes, you read that right, 18 tests. It was 10 or 11 vials of blood and of course they couldn't get the vein in the first arm. After several minutes of poking around in there, they got the other arm to work. Anna coped so well until the blood finally started flowing and then she lost it. It was this wailing weeping sound that tore through me... poor baby. The endo is checking her thyroid levels, lipids, blood sugars (she said that Anna was primed for diabetes if we don't get this under control asap), prolactin, and lots of other stuff too. We should have results in about a week or so.

So I am going to register with Weight Watchers online. I made lifetime membership years and years ago (and 50 pounds ago, lol) so I know what I need to do to help her eat better. But I need recipe ideas. This will be such a hard adjustment for her and I feel awful for allowing her weight to creep up so rapidly. She battles so much already!

I almost forgot... I have a funny story from the neuro visit. I had to take Dominic with us which does lead to a more stressful appointment but I really had no choice. The NP was very kind in dealing with our chaos, our noise, Anna's anxiety, and overall disruption. As we were leaving, Dominic started hanging onto the back of my shirt so I pretended to not know where he was. I kept asking Anna, "Where's Dominic? Where did he go?" And Anna kept saying, "Right there, mommy. He's right behind you!" And I would spin around with Dominic still hanging on and hear lots of little giggles. We made it down one hallway and were at the checkout desk and I was still playing this little game with them. We even got the grumpy checkout clerk to laugh because Dominic's laugh was so infectious. The NP had given them lollipops so they were enjoying those while I was attempting to set up the next appointment (oh shoot, I still need to do that!) and while I was doing the "where is Dominic?" game. Just as another family came up behind us (one with a baby, I might add so Anna starts perseverating on will the baby cry while she is pinching me arm and while I've still got Dominic on the back of my shirt), Dominic chokes a little on his laughter and lollipop. I hear Anna say "Uh-oh" and I turn to see that Dominic has barfed all over the floor and the backs of my shoes. Lovely! The family behind us who was a moment ago just beginning to giggle along with us is staring at the pile of puke and is frozen in their tracks. Anna is loudly proclaiming, "Ewww, Dominic puked. Why did he puke, Mommy?" I ask the checkout girl if they have maintenance or housekeeping in the building to call to help (after all, it's a children's specialty center right beside our children's hospital and I'm sure they've had some messes before, right?), and she says no. Can you believe that? So I begin this sojourn of trips to the bathroom to clean up my son, clean up my shoes, and clean up the floor. Everyone just watches me, no one offers to help, and by the time we were finally cleaned up and checked out, I felt like hours had passed. Wouldn't you know that we ended up on the elevator with that same family? Groan. Anway, now I can laugh about it because it was pretty ridiculous.

I'll keep you all posted about Anna's test results and if the Lexapro works for her anxiety. Thanks for reading!

The Value of Happiness

(I had intended to have this be a Thoughtful Thursday post, but I could not get my thoughts aligned yesterday...)

So I posted a Facebook status update this week called happiness is overrated. I got some posts from friends who gave me hugs (thank you) and gave me amens! (thank you, too)... I even inspired a song. It's quite satirical and made me laugh. From Paul Sonnenberg:

Too Damn Happy

That's just too damn happy
That's just too damn glib
That's just too damn happy
That's no way to live
So stick your peace of mind
Where the sun don't shine
That's just too damn happy.

That's just too damn tragic
That's just too damn sad
All this talk of magic
All those dreams you have
But when the rent comes due
For Mother Hubbard's shoe
Magic beans ain't magic.

And yet you're so damn busy
And yet you're so damn rushed
That's just too damn busy
It's not the life for us
We're gonna stay in bed
Til the dogs need fed
You just make me dizzy

Give me honest feelings
Give me honest work
Give me time to linger
Don't be such a jerk
And stick your peace of mind
Where the sun don't shine
That would make me happy...

Thanks for sharing this with us, Paul!

It's not that I'm depressed (well, actually maybe I am but nothing serious), it just seems to me that there is so much pressure to conform to this notion of being happy... kinda like breastfeeding, if you know what I mean. It's a worthy goal and I am envious of those people who are truly happy, I know it's work to attain that and it's a choice everyday to find it. But is it realistic?

In my 30s, I decided to let go of the daily battle of being unhappy with my weight and began to accept that I'm heavier than I'd like. There used to be a constant nagging voice in my head that constantly criticized myself and was disgusted with myself. I used to avoid getting my picture taken and would not even go to reunions or events because I was heavier than I'd like. I'm not sure what changed... but I realized that the people I most admire and respect are all different sizes... and that in the end, weight is not what matters most in defining who I am, how much I am valued, and how much I like myself.

How does this relate to being happy? So much of what my life is about is out of my control... I take the pieces and make the best of them. If I'm quite frank, my day-to-day life is not one most people would want or envy, it's hard work. My marriage is hard work; it was difficult before our special needs daughter arrived, it's hard still. There are compromises you make in life due to circumstances beyond your control, there are compromises you make so that the icky tension goes away. One day, like when you've faced a breast biopsy, you find yourself reflecting on your life and realize it's just... meh. That's it. Meh.

So now what? I'm 40. I'm not blissfully happy and I do not see any scenario where that will change. Do I continue to feel awful about that? No, I need to reframe it.... hence the happiness is overrated post on Facebook. I am grateful for the blessings in my life and of those I have many. I spend time laughing and playing, I seek opportunities to do things that bring me joy, and at the end of the day, I know things could be much tougher. There is value in happiness, there is also value in accepting that happiness is overrated. I'm tired of comparing myself to the positive people and falling short, I'm tired of feeling like a failure in yet another aspect in my life. Today I'm embracing my MEH.

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.

Sea World and my search for acceptance

Curtis had to work all day yesterday, so on the spur of the moment I decided to take the kids and Jenny's boyfriend to Sea World. The season pass was the same amount as a day pass so we got that and will try to make it down there this summer a few times. I forgot that it's a nearly 2-hour drive! Ugh! But the kids were great on the way there and we pretty excited. We rarely go anywhere except our local zoo (which has some monkeys and a couple of lions) or the nature center.

We got a double stroller right off since Anna fatigues so quickly and Dominic runs off. Jenny and Chris looked so cute, I could almost picture them with their own family (hopefully not for a long time, lol!).

Dominic loves maps and he studied this one quite closely, lol!

He is so photogenic.

There were two really cool highlights to our day trip. The first was getting to feed the dophins. Anna wanted to stay with the dolphins all day, it was very hard to get her to leave that area.

The second was the Shamu show. We got there about 10 minutes early and both little kids started crying. Why? Dominic didn't want to get wet and Anna was scared. I'm used to making a scene out in public. We sat in the very back row, high up, and got settled in.

Right behind us was an area for those with disabilities and shortly a girl in a wheelchair with her mom and aunt (?) sat behind us. Anna has a bit of an obsession with wheelchairs and kiddos who ride in them. Soon the questions started... "Mommy, why does she look like that? What's her name? Why is she in a wheelchair?" I said to her, "Anna, why don't you ask her?" So Anna turns around fully and asks, "What's your name?" to the girl. She was not able to respond, she had a trach and appeared to be fairly medically complicated. So I said to the mom, "This is Anna. She would like to know your daughter's name," to which she responded, "This is Caitlyn." Anna starts talking to Caitlyn while I explain to her mom that Anna has autism and may ask some inappropriate or uncomfortable questions. This mom and I made eye contact, and in those fleeting seconds, a lifetime of special needs appointments, heartaches, testing, therapy, worries, and hope passed between us. There is a special bond among mothers who care for children with special needs and it only takes a moment to establish that connection. I also explained that we are continually working on Anna's filters... what is socially appropriate and all that.

The mom responded with a very profound statement:

"YOU are her filter."

I've thought about that a dozen times since then. It's so true. I am Anna's filter. I interpret the world for her, I recognize when sounds will be too loud, when a crying child will set off a meltdown, when she is about to lash out in anger and hurt someone. I recognize how to shift those moments into a silly song to distract her or to take a walk to clear her head. I am teaching her to recognize those clues so that she can take care of herself too.

The mom and I made small talk; they lived locally and came quite often to Sea World. The mom said that Caitlyn seems to like the Shamu show, that the music and lights sparkling on the water seem to get her attention. She said, "You know, I can't really know how much she understands but she seems happy here." I thought about how hard it would be to not know what your child was really feeling or understanding.

Anna LOVED the Shamu show, as did Dominic and Jenny (Chris enjoyed it too!).

Look at the pure excitement on her face!

I got two amazing shots of Shamu jumping out of the water!

After the show, we looked at the flamingoes and sea lions. This photo makes me a little sad because this is so indicative of Anna's attention. She is constantly on guard, looking around for small children who might be crying or loud. It's like she is constant alert and it makes her nervous system edgy.

We had a few moments of tough behavior (Anna wanted to push Caitlyn's wheelchair and got a little angry that she couldn't and walking through the gift shop to exit was also hard [btw, they ought to set up a separate exit for people with behaviorally challenged children]), but it was a pretty good day. Anna did end up crying for about 30 minutes on the way home saying that her eyes, head, and tummy hurt and she wanted to go to bed. That is a classic aura for Anna, and I was worried she was going to have a seizure in the car but she managed through it. I think it was more an overload meltdown from the day than anything else.

I've been thinking about Caitlyn's mom. She had such a peaceful manner about her; when she shared why they come to the Shamu show, there was no sadness or wistfulness, just truth. I feel that I sometimes over-explain Anna, that it feels like I'm making excuses for her or diminishing her being by labeling her. I wish I could just let her BE. I have gotten better about not noticing other people noticing her and I am a good filter for her. But I have a ways to go to get to true acceptance.