Happy New Year! and Reflections

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

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

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

Happy New Year!!!

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 ortho visit

Early in spring, Anna had a checkup with the pediatric geneticist. At that time, she noted some kyphoscoliosis in Anna that she wanted checked out by an orthopedic doctor. It was a six-month wait to get into the Specialty Care Center at Dell Children's Medical Center and today was our appointment. They said to expect the appointment to last 2-4 hours! Wow. So we packed up a ton of stuff to keep us entertained. Anna was just excited to leave school early. :)

The clinic is located inside of the children's hospital. We had to park way out and then find our way through the maze of the hospital corridors only to discover that the clinic's entrance is only from the outside of the hospital on the rear side. Oy! What an ordeal just to find the place! Then we had to sign in just to get registered and the place was packed. There were many very involved kiddos waiting to be seen and Anna is both fascinated and scared by kids who are nonverbal and in wheelchairs. She doesn't realize how to interact appropriately and definitely made a few moms uncomfortable with all of her questions. Ten minutes later, we were called to check-in then we had to wait again to be called back. By the time they came for us, Anna was starting to withdraw and had her hands on her ears.

They first wanted x-rays. That surprised me and I didn't have a chance to prepare her. But she handled it very well and the quiet of the x-ray room was a welcome respite from the chaos of the lobby area. Unfortunately, we had to go back to the waiting room to be called into an exam room. That whole process took another 30 minutes.

Then it was blood pressure, weight, height, exam room... where I then had to fill out yet another info sheet on Anna's history. A nurse practitioner came in and began asking the same questions that I was writing (so frustrating, don't you think? Why isn't there a central repository database with each individual's patient's history, medications, and allergies?). Then we waited for the doctor. And waited. And waited. Thank goodness I brought my laptop with a Max and Ruby DVD for Anna. We also brought snacks, Audrey (Anna's favorite baby doll) with her assorted accessories, and some other activities. We even ended up turning on the TV at one point. We waited almost 2 hours for the ortho to come in.

When he shows up, he doesn't introduce himself, he doesn't apologize about the wait, he just starts asking me questions. Anna pipes up, "What took you so long?" I could've kissed her! That's my girl! Ha! He dodged the question and reviewed her history. He said the x-rays showed a slight scoliosis, 6-7 degrees, and a mild kyphosis (hunchback). Between her hunching and her lordosis (swayback), her hyperextended knees are worse. But none of these issues are worrisome yet and the ortho recommended that her pediatrician follow her and if they get worse, to come back in. He also noted some mild (+2?) clonus in her ankle and foot. I'm not sure exactly what that is... I think tightening? So we arrived at 12:30 and left at 3:30 to spend 10 minutes with a dismissive ortho... typical.

Anna was so stressed by the time we hit the highway, she was asleep. Bless her heart.

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.

Thoughtful Thursday: Mean Mommy

Anna is in a bit of a bratty stage. I'm happy to see this typical behavior and I understand it, even though it's a few years later than average. But when she acts out, these behaviors are more intense because of her age and size. And she doesn't understand consequences the same way my other children do.

We ran a few errands today, one of which was a trip to Target to order Dominic's birthday cake (one week from today! we're getting a Pokeman sheet cake with buttercream frosting, mmmm) and to get a few dorm supplies for Jenny's upcoming move. Anna wanted to look at toys which I was very clear wasn't an option on this trip. She was doing pretty good and I even let her pick out a new backpack, but then on the way to area rugs, she got angry that we weren't stopping in the toy section. I won't get into every nitty gritty thing that happened but I did end up putting her in a timeout in the middle of the store. I made her sit down and take some deep breaths... I just wanted three minutes from her in the hopes that she could turn it around on her own. She threw her shoes at me. Threw her shoes.

Then it escalated.

We went to the car. Actually, I had to physically move her out of the store while she was hitting me and calling me names. She was also knocking items off the shelves as we walked past. I stayed so calm on the outside.

Once we got home, I talked with Curtis first... she had a similar incident with me a couple weeks ago... I felt like we needed to do something different than just timeouts, grounding, and taking away privileges. So after discussing it, we decided to take away her baby dolls. All of them. She has to earn them back one at a time. I feel like there is some trigger in there... not getting what she wants and feeling powerless. She was worse when the Risperdal was failing but those behaviors felt different to me, like her lack of impulse control was truly out of her control.

I had her help me box up her precious dolls. I think she understood what we were doing but I felt so mean. This is one of the hardest part of parenting... disciplining with love. I cannot allow her to behave like she did today and I have to find a way to teach her to stop. This is so hard. Because of her attention span and play skills, we're letting her earn one doll back at lunchtime and another at dinner based on good behavior. I hope it works.

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?

Poison

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

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

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

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

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

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

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

Chinchillas, bad days, and a need to whine

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

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

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

I think I made a mistake.

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

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

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

Two kids crying as we walk to the car.

Sigh.

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

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

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

The field trip blues...

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

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

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



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

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

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

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

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



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

Thanks for reading.

The baby doll birthday party

Anna has lots and lots of baby dolls but two of them are very special... George (named after George Washington) and Audrey (named after a neighbor child that lives up the street whom Anna adores). George and Audrey are twins, though George doesn't smile and Audrey has a big grin... and they came to our family about a year apart from each other. Anna takes George and/or Audrey everywhere with us. They are about the size of a real three-month old baby and we get so many people stopping us when we are out. All the time we hear, "Oh wow, I thought that was a real baby!" I've laughingly joked that we need to put a hidden camera on the babies... they would be a YouTube sensation! We buy them real baby clothes at Goodwill and Santa brought them real diapers, bottles, and other accessories the last two Christmases. They really have become members of the family.

I thought it would be fun to have a birthday party for George and Audrey to celebrate their "first" birthday (which I think we'll repeat every year Anna wants to). We initially had it scheduled for last Saturday but Anna got sick and we had to reschedule it. Since today was an early-release day from school, we had the party this afternoon. We had decorations, snacks, drinks, and cupcakes. We even sent out invitations to the neighborhood kids! (Any excuse for cupcake, eh?) What a fun day! All of Anna's baby dolls attended, and Annie and Audrey brought their dolls too!

Here are some pictures (you can see George and Audrey in the third picture from the bottom, they got matching outfits for the party)...





















You know the best part of this day? Audrey (the girl in the Orange Crush shirt for whom babydoll Audrey is named) brought down a deck of cards to show Anna how to play War. She thought that Anna might be able to understand the game and play it in a group. Though Anna didn't quite get the concept, the other girls helped her, and she actually sat there and played cards for nearly 15 minutes. I get misty-eyed thinking about it.

Thanks for looking!

Way Back Wednesday, the search for a diagnosis

We spent the morning in the cardiologist's office for an echocardiogram and EKG on Anna. The geneticist wanted to make sure the connective tissue disease we have in our family isn't affecting her heart like mine (I have a mitral valve prolapse). The echo and EKG were normal so that is one more thing checked off the list. It made me remember when Anna was 3.5 and had started having seizures. I was wondering at that time if we should continue searching for a diagnosis... when we get a new symptom, I always struggle with this decision. How much trauma do we put Anna through and how invasive do we get in order to find out what she has? Here's a post from 11/29/04 on iVillage's Child Hypotonia board:

~~~~~

DH and I are considering opening up the diagnosis search again. Anna had another seizure on Friday (this makes 6 tonic-clonics total, 5 since the end of September). With this new label of epilepsy, it adds a new piece to the Anna puzzle. Could a geneticist now look for something that hasn't been looked at before?

Finding an answer wouldn't change how we are managing Anna's care, except for the seizure control piece. (I'm going to start a separate thread about that.) It would help us know what to expect (what we all are wishing, right?) and maybe help us find more balance in our lives than we currently have.

It means that we would need to seek out someone with more experience or expertise than the folks we've been dealing with, because they've all said, "I don't know." It means maybe putting Anna through more invasive tests. It most likely means that we still won't have a diagnosis at the end of it all.

Her symptoms include: epilepsy, hypotonia, microcephaly, global developmental delays, sensory integration dysfunction, high myopia (-7.5 rx), failure to thrive (resolved at age 3), feeding and sleep issues.

She has tested negative for: metabolic disease, mitochondrial disease, Rett Syndrome through MECP3 gene, Angelman Syndromethrough methylation and UBE3A sequencing, chromosome analysis, glycosylation defect, and 7-dehydrocholesterol. She has had two normal MRIs and EEGs.

I wanted to get your opinions, advice, cautions, and two cents. It seems like with the seizures happening more frequently, SOMETHING is going on, we just don't what. Is the epilepsy a symptom of a syndrome or just plain ole epilepsy? Obviously, we need to control her seizures... more about this in my next post. I need a reality check. Thanks.

Holly and Anna, 3.5, no dx.



~~~~~

I have a whole slew of new tests that she's tested negative for but I would still like to know. Thanks for reading.

Way Back Wednesday

I got the most incredible email from somebody on Facebook recently... one of those "isn't it a small world" moments. This mom has a three-year old daughter with complex issues and she was researching PDD-NOS. She came across my YouTube videos (which is too cool! we show up in Google search results for PDD-NOS!) and watched Living with PDD-NOS: A Trip to the Park. She said it reminded her so much of her own daughter, just an older version. She followed the link to my blog here (hi, Nicole!) and realized I looked familiar. We have actually talked before a couple of years ago when I was running a fundraiser for Brigid who is diagnosed with MELAS, a degnerative mitochondrial disease. Come to find out, this mom who wrote to me also lives in the same city as me! I can't wait to get to know her better and be a support to her.

Anyway, this brought back some old memories for me. I remember when Anna was 2-3 and being desperate for information, hungry to talk to parents with older children with similar issues, and not finding many parents out there. At that time, I was an extremely active member of iVillage's Child Hypotonia message board. I thought it might be useful to look some of my old posts and share them on Wednesdays as a new feature... Way Back Wednesday! I'm also going to add a bit of commentary and maybe some old pictures too. It could help moms with younger kids know they aren't alone and also show where Anna was then compared to now.

I found this post from December of 2002. Anna was 21 months old. At that time, she had some global developmental delays (including speech, some physical stuff, and social skills) and hypotonia. We did not yet know about the PDD-NOS and she didn't start having seizures until she was 3.5.

~~~~~

Hi everybody... I've been gone for awhile, here's an update on Anna...

My last final exam is tonight... YEA! What a tough semester this has been. I've been lurking on the board, but have been too busy studying to post anything lately. It sounds like everyone is doing pretty good and getting ready for the holidays. I should get an A in both Pharmacology and Microbiology. Woo-hoo! Now I can relax and concentrate on Christmas. (BTW, my older daugher, Jenny, turned 11 last week. Wow, how the heck did that happen???)

We made a family decision a few weeks ago that I will be taking a long break from school to focus on Anna. We all agreed that putting her in daycare will not help her flourish and besides it would break all of our hearts. I'm not sure how long I'll break from school, maybe until she starts kindergarten in the fall of 2006. If she starts catching up and things look good for her to go to preschool, the plan may change. In the meantime, I'm going to focus on "home-schooling" her, being her full-time OT, ST, and teacher. I'm going to enroll her in a Gymboree class for gross motor development and socialization. I'm going to take her out more, expose her to more kids (and probably more colds-LOL), and try, try, try to help her catch up a little.

In the last couple of months, Anna has started babbling lots more, and it almost sounds like jargon talk. She has finally started making the "ma-ma" sound, though it comes out like "maaaaa" -- hey I'm counting it as mama! She's picked up a couple of more signs, like milk and dog, so her total signs are up to 15 or so. Her foot isn't turning in quite as bad as it was before, though when she's tired, in it goes and down she falls (this morning, she fell twice). She's still not eating much in the way of solid food, but she's taking a bottle with Pediasure, formula, or milk with no problem. The whole sleep issue is still atrocious. She's up anywhere from 1-3 times a night, but she doesn't always want a bottle each time. This last week, she has started crying out in pain (or what sounds like it) and is nearly inconsolable for several minutes. It's very sad and I'm not sure what's going on or how to help her. She only does it once and it's usually early, 1-2 hours after she's gone to sleep. Ugh. Her daytime schedule is still really erratic too. Sometimes she takes 2 naps a day, sometimes just 1. It depends on how early she gets up for the day (anywhere from 5:45-7:30). I'm so much looking forward to not having to study when she's sleeping... I see a lot more naps in my future. :)

We're still waiting on the results from her genetic tests. The FISH for Angelman's came back negative, which we figured since she doesn't have seizures or hypopigmentation. Once we get the results from the other tests, we may go ahead with the DNA methylation study for Angelman's... a lot of her symptoms fit the gene mutation version of the syndrome. I'll let you know. Well, this turned into a novel. Sorry! I'll be a better friend in this community again now that I'm done with school. I love you guys and thanks for all your support!!!

Holly and Anna, 21 months, hypotonia, global delays, no dx.

~~~~~

So interesting to go back and read that! We did proceed with the DNA methylation study for Angelman Syndrome and it was negative. I was taking my pre-requisites to apply to nursing school, I got accepted, then deferred and declined in order to focus on Anna. I had forgotten that she still took a bottle (in fact, Anna stayed on the bottle until well past her second birthday) and that Pediasure was her main source of caloric intake. She was only 21 pounds at 21 months. Oy, those sleepless nights! Anna slept like a newborn, up several times a night, until she was three or so? Here are a few pictures of her from that age:

She has always loved to dance! Here we were at a performance of Jenny's... Jen used to take a sign language class (so that she could help teach Anna sign language and communicate with her as well as others) and the class would perform several times each semester.


At Christmas, opening a musical present. You can see that she is initially scared of the bongo toy as she is reaching up behind her to grab at Daddy. She still grabs us when she's scared today.


Another musical toy, another grab at Nana.


She grew to love this Mozart music cube!


Thanks for accompanying me on my journey to the past! I'm looking forward to another post like this next Wednesday.

Where do you start?

Because I've chosen to make our story public, and especially because of the PDD-NOS videos I made of Anna on YouTube, I get a lot of emails from other parents who have questions or want to say thank you (you're welcome, btw). Recently, a woman contacted me about a little girl she is adopting from another country that has microcephaly (basically this means a small head circumference... Anna's head circumference fell off the chart at 6 months of age and hasn't been back on since), cerebral palsy and other issues. She is trying to find out as much as possible about the potential challenges of parenting a child with special needs and is reaching out to other parents for support. I was so honored to be contacted and wrote up some initial advice for her specific to cognitive challenges and thought it might be useful to share here. I wish her the best of luck in her adoption and know she will be blessed beyond measure for opening her heart and home to this special little girl.

Let's see, a few things come to mind that you should do when parenting a child with a cognitive disability. First, contact your state- or county-run program of services for mental health and mental retardation (MHMR). We live in Texas and ours is funded through the state and run by the county. They recently changed their name from MHMR to Integral Care to keep up with the (thankfully) progressive movement to ban the "R" word. We have decades-long wait lists for services so the sooner you can get your child signed up, the better. We first took Anna to MHMR when she was five; she was given some IQ tests to verify eligibility and we were assigned a caseworker. She meets with us monthly. We get community service and respite hours where networked providers can come to our home and work with Anna on specific goals... anything from eating in a restaurant, to academic goals, to self care, to a break for us. There have been a lot of changes in services lately and we've lost quite a bit of hours. Luckily my mom is a huge support and has contracted with the state to be a network provider so she is our respite person (and she lives next door!). That is a very good thing for continuity and convenience. Don't hesitate to ask family for additional support.

Up until age 3, each state offers early intervention programs to help with speech therapy, occupational and physical therapy, social skills, and academic skills. Contact your local ECI (early childhood intervention) office to schedule an intake as soon as you as you have concerns. They will get you set up with home visits to start on some goals. If you have good insurance, you should also get private ST, PT, and/or OT. If your child has sensory integration dysfunction, they can get specialized therapy with an OT to help with that. Until your child starts school, you can really make an impact with therapy.

As soon as your child is 3, contact your local school district to see if they offer a PPCD program (preschool program for children with disabilities). Between the ages of 3-5, the school district will take over where ECI leaves off... continuing therapy and placing your child in a preschool program geared to help maximize potential. You'll soon become familiar with the IEP (individualized education program); the IEP will dictate academic and social goals for the school district to work on from age 5 on.

I also encourage you to join a support board. iVillage is where I got my start and I met the most incredible group of mothers whose children have similar issues. I started with a child hypotonia board, added developmental delays, and finally added the seizure support board after Anna's issue got more complex. This group of women I've known since Anna was 15 months old and she is now 9. We actually meet once a year in person for a retreat without husbands or children. It's so nice to be with other moms who "get" it.

I have lots of resources, so if you need more information or know any parents who may be looking for information, please don't hesitate to contact me. My email is holly0817@hotmail.com. Good luck to all of my sisters in motherhood parenting children with special needs.

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?

Pediatric geneticist visit

I got a call yesterday reminding me of a visit with the geneticist for Anna this morning. Ugh! I did NOT have that appointment on my calendar so I'm glad they called. I don't know if you all remember but before Anna's MRI and ultrasound last month, I tried and tried and tried to get into to see the geneticist before the procedure. I thought these new symptoms might give Dr. I another clue as to what is going on with my baby girl. We did get an appointment set up only to have the doctor cancel it due to illness so we did not get to see her prior to the MRI. I totally forgot that we had rescheduled it for today.

Anyway, we get there at 9:00 a.m., right on time. At 9:35, I poked my nose out of the exam room scanning for a nurse wanting an ETA from the doc. Waiting that long with Anna is a chore! Nothing from the nurse. At 9:45, I went out again and asked again a little nastier... everyone scurried about and said she'd be in within the next few minutes and that she was having computer problems. Grrr. I threatened that if she wasn't in by 10, I would leave. I HATE that doctors make you wait that long. How hard would it have been to come in at 9:15 and say, "Dr. I is running late/having computer problems/blah blah blah, would you like to wait or reschedule?" Seriously!!!

So I was boiling when she appeared at 9:53. She apologized for the delay, then immediately scooted over to Anna and starting engaging in the nicest conversation with her. I felt my anger melting away as I saw a full page of handwritten notes on the doc's notepad and saw how fully she gave Anna her attention. Within just a few minutes, I was back in find-a-diagnosis mode... it was nearly three years ago when we last saw Dr. I. She has really prepared for our appointment by reviewing Anna's history and recent tests (granted, it was in the 50 minutes we were waiting, but I was still pleased).

It's a very emotional process to look for a diagnosis. Years ago, it was a much stronger drive to find an answer and when test after test came back normal, I began giving up hope that we'd ever find an answer. Well, that door has been opened again. Wouldn't it be something to get a real diagnosis at 9 years of age?

The doc mentioned that Anna's MRI and ultrasound results from last month were normal but her blood work was highly abnormal. Then she proceeded to say that the endo would need to go over all of that with us. Ugh. You bet I was on the phone to the endo's office as soon as I left there, but I didn't hear back from them yet. I'm glad her MRI and ultrasound were normal though, that's really good. I wish they would have called already.

Dr. I wants to look at Fragile X. I thought Anna was tested for this as a toddler, but she wants to do the full DNA sequencing for Fragile X. When I looked at the checklist of symptoms... well, my jaw hit the floor. Anna has nearly every one of these. Sigh.

We also talked a long time about connective tissue disease. Dr. I feels that Anna actually has two genetic syndromes, one connective tissue related and the other causing the seizures, PDD-NOS, anxiety, and cognitive challenges. My mom's mom (now deceased), my mom, and myself have a genetic connective tissue disease. The last geneticist I saw said that I have five of the six markers for Ehler-Danlos Syndrome. Anna is much more affected than I am. The doc noticed that Anna's joint laxity has gotten much worse over the last three years and that she has developed kyphosis (like a hunch in the upper shoulders). So she is referring us to an orthopedic doc. She also wants us to see a cardiologist to look for connective tissue issues in her heart (I have a mitral valve prolapse, so we need to see if Anna does too). During the physical exam, Dr. I is really exclaiming over Anna's flexible elbows, hands, wrists, and fingers and Anna says, "Is that good?" to which Dr. I replies, "No honey, it's really not." It was very sweetly said, but humbling too.

The 2-hour visit exhausted me and Anna... I'm anxious about the blood test results so as soon as I get them, I'll let everyone know. Dr. I was pretty sure the endo would be ordering more blood work soon, so we'll be getting the Fragile X DNA test and fibrillin (connective tissue) DNA test added onto that blood draw. Anna has such a hard journey... there are moments that really hit me and today was one of them.

On a happy note, I got to take Anna out to lunch at her favorite restaurant before returning to school. How cute is this girl, huh?