Thoughtful Thursday: The Annual ARD

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

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

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

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

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

Happy New Year! and Reflections

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

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

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

Happy New Year!!!

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.

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.

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.

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!

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?

i heart faces ~ play

To get my mind of this rough day, I decided to participate in this week's challenge at i heart faces... play! This is a photo of my daughter, Anna, if you don't know her. She is nine years old and has PDD-NOS, a form of autism, so play skills are not natural for her. I created a box of dress up clothes and accessories when she was five to encourage make-believe play, but she never really took to it. Recently, we got the box out again, and to my delight, she started dressing up and playing pretend. She's still not great at making eye contact, especially for photographs, but I love love love this photo of her! After days like today, I need to remind myself of this sweet smile.



Thanks for looking!

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.

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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.