potty time

So as I was sitting in the waiting room on Thursday, I heard the door to the classroom open and Erica's giggle coming from the hallway. It was 20 min. before the end of class, so I wondered what the deal was. She walked right past and down the hall to the bathroom :) Very cool.

Today she was very excited to be the student who won the prize of the week for the most leaves on her branch of the tree. She was awarded a blue balloon.

puppet show :)

When Kelly arrived this week I asked and received answers to all my questions about various things in the classroom. She also let me look at Erica's file, which contains her application to the program, the initial evaluation by the conductors (extremely detailed and perceptive, I must say), and the goals written for this class session along with a lesson plan detailing tasks she will be assigned to achieve progress toward those goals. It is a little different than what we've done in the past, but I am impressed with the attention to detail in the file and noted that all the goals I mentioned in the application were included.

I have to admit that as the days go by, Erica's walking looks better and better. At the start of week one, two conductors were supporting her at upper and lower arms AND using their feet to anchor hers to prevent the "two foot hop," as we like to call it.Yesterday she exited the classroom with only one conductor giving her support and only at the lower arms. She also walked out the door, past her waiting chair and into the lobby just to show off. :) I am impressed. PTs have gotten this level of achievement out of her before, but not consistently and only after working with her for longer. So, once again, we'll see where this leads.

I was under the impression that toilet training would be a big focus, and I was interested to see if that would lead to any progress. But they haven't tried it that I can tell. I'm not surprised - they do so many things already that it would seriously slow them down in other areas. This, of course, is why we don't spend our days at home focusing on it. She might be further along if I ever got it in my head to have a toileting boot camp at home, to the exclusion of all else. But other things always seem to get top priority. She does well at school, where it is worked into her daily routine.

Today Erica didn't want to come to CE, and had quite a meltdown at the door going in. But after a bit she was fine, and now I hear giggles of delight from her in the room as the conductors are using puppets today to work on various concepts and to praise the students when they work extra hard or complete a task. One student, I'm told, is not a fan of puppets but is taking his cues from the girls and therefore OK with it. They are really doing it up, with funny voices and making fun of the conductors which the kids are really loving, of course!

week one of CE

Well, tomorrow starts week #2 of CE so I need to get some thoughts down about week one! As I observed the activity of the first week, I had a lot of thoughts about how they were doing things such as, "Erica actually does quite well walking without holding onto anything, as long as I'm behind her with a gait belt. I wonder if I should mention that to them?" But I kept quiet because I wanted to see how she responded to their methodology, and also because I'm waiting for Kelly (the director) to get home from vacation because I'm not too confident about talking with the Hungarian conductors. At the end of the week, she walked out of the room and into the hall - at a rather brisk pace, I might add - with the conductors supporting her at each elbow but not holding on to anything. Hmmm - there must be something to that ladder thing.

I will say this about Brighter Beginnings: they have taken the space they were able to find and are doing the best with it! I know that Kelly mentioned they hope eventually to build their own clinic - which of course would be ideal - but in the meantime, my only real complaint about this facility is that the front door is not ADA compliant. It is super heavy (therefore my usual helper, Natalie, cannot manage it), has no stopper of any kind, and is just a real b**** to deal with! Other than that, there is loads of parking in the lot because the other businesses in the building aren't super busy; BB has taken it upon themselves to spruce up the ladies' room, which has a nice changing table in it; their clinic is bright, roomy, and cheerful and the kids seem to really enjoy being in there; and the waiting room - although somewhat small - is nicely decorated. Natalie and I walked around the building on the first day to explore, and found that an elementary school directly behind the property has a really nice playground and a picnic table under a large shade tree. We took advantage of this on Tuesday, before the weather spiked too hot and muggy once again. Oh, and the location is just a hop off the highway (33) for those of us who are driving a long way to get there!

Here are some random observations I made this week:
- They are obviously doing a lot more crafts and learning activities than I realized, because I see a bulletin board in the classroom where they are putting leaves on a tree for something and displaying artwork... I need to ask what that's all about and take a closer look. (On Friday Erica was excited to share that D. won a prize for having the most leaves.)
- During lunch, they each sit around a table on wooden chairs with high ladder backs. They have grab bars in front of them on the table, and I noticed they were encouraging Erica to hold this bar with her left (weak) hand while eating or manipulating craft materials with her right. She has a block under her feet for 90/90 positioning. To my surprise, they had no belt, towel, pillow or other support of any kind helping her to sit up and yet she was... without ever seeming even to start to fall over. How does this work?
- The written report on Friday stated that Erica worked very hard the first week, is becoming more active each day (? - not sure I see it, but OK...), sits and eats nicely at lunch (this I could see) with verbal prompts to keep head at midline, and is being encouraged to answer with complete sentences not just single-word answers. This last bit made the SLP cheer when I reported it on Friday... it's actually one of her IEP goals and these ladies didn't take long at all to realize that she is capable of sentences and to require it of her. Bravo!

This coming week, Natalie will be at day camp so I will have time alone in the waiting room - maybe I can surf the Internet to do some in-depth reading on CE methodology and find answers to my questions about why they do things a certain way. Or maybe I'll just pester Kelly since she'll be back from vacation, LOL! Probably a little of both. I know I plan to clean out my inbox (over 300 unread e-mails at last count - not from actual people, mind you... those get opened first... these are links to articles, newsletters from ARC or the BODD, and the like).

Hopefully, I'll be better about posting news more frequently, and we'll see where all this leads!

The latest adventure

Well, today was day three of Erica's latest adventure - Conductive Education, or CE. You can Google CE for any number of informative sites, so I won't go into detail about the principles of the program here. Suffice it to say that it is an overall philosophy of how to educate a person with a neurological impairment, such as CP, and the result is a program that resembles an OT/PT/speech and life skills training class all rolled into one. I've wanted to give it a try for Erica for some time, but not until a clinic opened in nearby Marysville did I get the motivation to follow through. Brighter Beginnings was started, as are most CE clinics, by a parent who wanted the program available to her child and turned that desire into a business opportunity, helping out other parents in the area who also wanted something closer to home.

So we are driving to Marysville every day for four weeks. Kinda rough in the gas usage department, but so far OK in all other aspects. The class meets from 9:30-12:30 each day, so we avoid the morning rush hour. Natalie takes along several kindergarten readiness workbooks, coloring books and magazines. We are spending about an hour each day on school-related stuff, which is WAY more than I would make time for during summer break if we were at home, so that is a big plus for the little sis. I have a few friends in Marysville whom I never get to visit (we always meet in the middle when we do brunch), so that is nice as well.

Parents are not typically encouraged to observe CE classes, but at this clinic they keep the curtain open on the two-way mirror/window for a few days so we can get a feel for what they are doing in there. I know that, similar to the intensive PT programs we've attended, there will be a home program given at the end for follow-up and continued progress after the class ends. I'm assuming that means we'll be allowed to observe again at some point, otherwise how do we really know what we are supposed to be doing?

Another interesting aspect of this experience is that the conductors (they are highly trained at the Peto Institute in Hungary, but they are not therapists), being Hungarian, have strong accents and their command of the English language is good but not easily fluent. Communicating with them is sometimes frustrating. We were encouraged to bring a notebook in which they would document what the class is doing and progress being made, but as of day 3 there is only one entry and it mainly praises Erica for being well-behaved and a model student. Cool! But that doesn't tell me what she's doing. I don't get much from her, either. Yes, it's a blessing that Erica can communicate verbally to an extent. But when questioned about details of her day she usually says "I dunno." Come to think of it, maybe that's typical behavior for a 9-year-old ;)

My observations thus far have been that they are doing some interesting activities: circle-time type greetings at first, then some floor time for stretching and range-of-motion work; a walking program and time to work on individual goals - rolling, crawling, pushing up to sit... wherever they are at. They eat lunch together at a table, and this provides the opportunity to work on self-feeding skills, use of utensils, social skills and washing up. I have heard them sing songs together and seen them talking about some topic (plants, according to the written report on the first day... but what aspect of plants I know not).

In general, my first impression is that Erica is not as challenged by this program as she is by intensive therapy programs, where she gets one-on-one attention and focuses intensely on a small number of targeted goals. Here, she is one of three or four students, and when she completes a task she often sits and waits for the others to complete the same task, creating "down time" that doesn't exist in intensive therapies. She also is slightly older and a bit further along in developmental stages, so I wonder if she were in a class with other kids of her same abilities if it would be more challenging for her. It's not really fair to compare CE to intensive PT, it's kind of like apples and oranges. But since that is our prior experience, it's natural for me to weigh the costs and benefits of each against each other when assessing the effectiveness of the program.

The jury is definitely still out! We are just getting started, and I haven't had a chance to talk with anyone about specific goals for Erica - it's all new territory so I'm laying back for a bit and just observing. Stay tuned for more impressions in days to come...

My Heart Touched by a Bear Named Rainbow

Erica went to Build-a-Bear with her Brownie troop. They chose it as a special activity using hard-earned cookie money, and made a few extra bears to donate to Children's Hospital. She came home with a tie-dyed peace bear which she named Rainbow (aunt @[1090760922:Kimberly] will be jealous!). When I realized it had a sound chip in it I rolled my eyes. But I take back all my negative thoughts of a song-clip ad nauseum because this morning when I went to get her up for school she was holding the bear in bed and played it... "I see your true colors shining through... I see your true colors, and that's why I love you, so don't be afraid to let them show... your true colors... are beautiful like a rainbow."

I thought, "wow, what an appropriate song clip for a rainbow bear - and how lovely for my special daughter to have chosen it when it has a message that is especially important for her to remember." And then Erica said, "I wuv you too wainbow."

Driver's test - check!

At long last, Erica has passed her driver's test. No, of course she is not 16. I mean the one where she goes to Children's Hospital and proves to doctors that she can maneuver a power wheelchair through doorways and down halls without mowing down people along the way. In gleefully posting this on Facebook, one of my fellow special needs moms commented that she hates that Erica had to "prove herself" to get what she needs, but loves that she is moving forward (literally - LOL!).

I understand why they have seating clinic and the driver's test, as we have come to refer to the process. But I continue to contend that they should have some sort of driver's training class for kids who need powered mobility, just like the schools offer driver's ed. for teenagers and automobiles. They say "well you can make an appointment and borrow a chair from the vendor to practice on for a month or two." But no one ever explains to parents how to teach their kid to drive one - and certainly no one offers to teach her for you! Erica has been practicing on and off for about six years!! The latest training period has been since November, when I started sending her to school in a chair that we simply lucked into that another kid had outgrown and was collecting dust in a garage. It's old, it has lots of quirks, it was rigged piecemeal in many ways by the previous owner, but it served its purpose.

And now, the paperwork has been filled out and the long process started to get Erica her very own, custom-built, made-to-order power wheelchair. The model that we agreed upon with the vendor can actually go up and down curbs and should have adjustable height. I can't wait to see her go to town in it - or, to the playground as the case may be. ;)

I can make it work

First, a passing mention as to - OMG has it been that long since I had something to say on here?! But I won't attempt to identify the cause - it doesn't matter.

Today I had a bit of an epiphany, and it has lifted my spirits in the midst of the latest seemingly unending onslaught of precipitation in central Ohio.

Erica is in second grade, and it has taken me three years - since the dreaded transition from preschool to kindergarten began - to arrive at this realization. As I was staring at the overwhelming task of getting her safely into a full inclusion setting for kindergarten, I kept thinking how I would need a combination of luck, charm and sheer will to accomplish it. After the transition was made, and we were enjoying a wonderful year in kindergarten, I thanked my lucky stars for the outstanding principal, the supportive special ed. director, and the wise and experienced classroom teacher. Mid-year of kindergarten she got a new one-to-one aide and suddenly life got even rosier. Kids were more accepting of her and were interacting a lot more, she made great strides verbally and socially, which have continued to the present. Then I decided it was this new aide who was the key to our success. She followed E. to first grade, and again I thanked God for putting all the right people into our school life. A wonderful first grade teacher - now I could actually see how her strengths were in some ways preferable to those of the kdg. teacher. Then, bad news: the principal - a key component to the awesome team - was moving on. Sorrow. Dread. What will happen now? Well, the new principal... just as nice as the old one (the former one - she isn't old!) Not as proactive, perhaps, but I have no complaints. We survived the transition - again. Second grade teacher - amazing. Completely devoted to fostering inclusion and independence for Erica and all the kids in her class. How do I keep getting so lucky? Hmmm. Aide has back problems. Erica now weighs over 50 lbs. (a major victory for a micro preemie who never registered on the weight chart until the age of 8). Aide might be forced to look for another job if her health cannot take the transfers etc. Gloom. Despair. But then again...

Things have somehow miraculously seemed to work out thus far. Is it really divine intervention or just dumb luck? Perhaps a little bit of both, really. But what are the constants in this equation? They are: my amazing, beautiful, smart, funny, strong and wonderful KID, and... me. I am her best advocate. I am maintaining communication with all parties involved. I am reinforcing what intervention and therapy are doing. I am reading articles on reading methodology for children with neurological impairment, I am driving her to vision therapy, I am attending conferences on assistive communication. I can do this, and I will - no matter who the teacher is, no matter who the principal is, no matter who the aide is. And we will make it work. I do continue to thank God for all the wonderful people who have made school awesome for Erica thus far, but no matter what happens next - we will make it work. I know I can.

Sigh. I think I shall sleep extra well tonight.

Oh, for the magic pill...

I am an intelligent, educated individual. I like to think that I can recognize an e-mail scam and that I won't get taken by a phony website. However, like most parents who have a child with a disability, I try to stay abreast of current research and I maintain hope for a big discovery that will make a drastic difference in my daughter's life. We did try some nutritional supplements that had big promises for drastic improvements. They didn't cost so much that we had to take out a loan to buy them, and we did see a nice improvement in digestive regularity, which made it worth the money - especially when you consider the fact that we avoided medication to achieve the same results.

So when I went to a conference and heard a speaker talk about... stem cell therapies... I tried to remain skeptical, not get too hopeful. I am not a parent who jumps into things with both feet - I tend to hang back and wait until someone else tries it first. So we won't be making a trip to Mexico anytime soon. But it all sounded so reasonable, so plausible - it seemed to makes sense. It gave me hope.

I just finished watching a video segment from 60 Minutes on "21st century snake oil" in the form of stem cell therapies which promise everything, result in nothing and cost you a bundle in the bargain. So my roller coaster car is back on the down slope re. stem cell research. I do believe it holds great promise for the future - just not the near future. Granted, the network expose profiled a man who calls himself a doctor and isn't an MD. And he was preying upon folks with ALS and MS and promising a cure. And he was charging them WAY more than the doctor I heard at the conference. Still... office in CA, clinic in Mexico, a lot that sounded quite similar.

I'm going to do more research on the doctor I heard speak. I'm going to keep reading everything I find on stem cell research. I've already sent my daughter's baby teeth to a storage facility where her own stem cells have been extracted and are waiting... for the future.

There is no miracle cure. There is no magic pill. But there is always hope.

Winter Olympics (shudder)!

Well, it's that time again. Time for the winter olympics. Time for TV commentators everywhere to make jokes about curling. And time for my flashbacks.

Erica was born in Feb. 2002 - we are about to celebrate her 8th birthday! The winter olympics were under way in Salt Lake City. Peanut arrived 3 months ahead of schedule; I was listed in serious condition - no visitors - darkened room - limited phone calls; I was told going into emergency surgery that she had an 80% chance of survival... I was ecstatic as I thought when they diagnosed my HELPP syndrome that she had 0% chance at 27 wks! After her birth at a lower-than-expected birth weight for her gestation, we of course had no idea if she would live or die. I couldn't stop crying, and through it all the only thing worth watching on the TV in my hospital room was the winter olympics. I haven't tuned in to CNN Headline News since, because I think just hearing the music they play for their transitions would give me a cold chill.

Each year when her birthday rolls around, I do not dwell on the scariness of her entry to this world. Instead, I focus on the miracle that she is and how very far she has come. But, every four years when the winter olympics coincide with her birthday, the flashbacks do occur. I can almost smell the dozens of flower arrangements in my room. (I had to send some of them home because I was getting headaches from the smell!) I will tune in to olympic coverage, I'm sure, but not on Headline News, LOL!!

The light at the end of the tunnel

Well, the construction project is almost finished. It will have been a four month project, start to finish. Four months of having a rusty dumpster and a port-a-john in my driveway. Four months of having strange men, many of whom barely speak English, traipsing around and through my house and being able to let themselves in if I don't answer the door when they knock (they have all been extremely considerate, but still...). Four months of starting every conversation with my husband with a run-down of phone calls made, progress made, who was here and what they got accomplished.

It is turning out beautiful and just the way we wanted it to. The contractor keeps asking us if we want to move into the new space. Erica is excited but also hates the idea of Natalie moving into her old room, which she has stated repeatedly that she wants to do. It will be finished next week, and then the work of moving furniture and cleaning can begin.

I will post pictures when all is said and done, and we do plan to have an open house when all of the room rearranging and decorating is finished. Hmmm. Come to think of it, that list is so long it might be the annual Crawfish Boil in June when we host the open house!

Stay tuned...

Mixed feelings

Most of the time, when a family embarks on a home remodeling project, the general mood is that of excitement for the changes mixed with dread of the disruption caused by workers in your home and, of course, the cost! Yesterday a backhoe started digging a hole in the ground behind our garage. Today the digging continues, along with some sawing and other noisy pursuits. We are building a first-floor bed and bathroom for Erica. She is getting too big for us to carry up and down the stairs and our home's bedrooms are all on the second floor. We talked about moving, but we love our house, our street, our neighbors and our elementary school. And then there was the housing market - we certainly would have taken a big loss on the sale of this home if we decided to move! So... we are adding on. And, I have to say, any shred of excitement that I should be feeling is overshadowed by the fact that 1. This is costing us a LOT of money. Erica is on a Medicaid waiver, which helps us out with a lot of costs relating to her medical and therapeutic needs. And if we were on a bigger waiver (with a bigger budget, as opposed to the Level One we have) it would have paid for a lot of the specialty products needed to finish the rooms we are adding. But no waiver will pay for new construction - only adaptation of existing structures. 2. I really liked our house the way it was; it was plenty big for us already; now I'm going to have even more rooms to clean! 3. I really, really, wish that all of this weren't necessary. I don't often fall into wells of self-pity or waste time asking "why my kid?" but major upheavals like this bring it out of me.

Oh, and did I mention the girls and I all have the flu? That helps my mood, for sure!

When this is all done, it's going to be great. I have to keep telling myself that...

Pumpkinpalooza

We took the girls to a family festival that was a fundraiser for the local children's hospital NICU. They had a corn maze, pumpkin patch, hay rides, face painting, carving demonstrations, and the big hit with our little ones - the barrel train. This was at Lynd's Fruit Farm - the same location as the apple orchards of my last post (the class field trip to the apple barn). Although it was very windy and overcast, therefore much colder than we anticipated, we still had a great time. I walked alongside the barrel train as they rode, just in case Erica leaned too far to the side and started to fall out. But she never even came close - she hung on to the little "steering wheel" like a champ and she and Natalie both kept yelling "CHOO CHOO!!" the whole time and giggling away. Fall is such a great time for family fun!

Apple Orchard

Yesterday was Erica's class trip to the apple orchard. Except for the part in the apple barn where the kids had to go through a narrow door and up 3 steps to an observation platform by the conveyor belt, the wheelchair handled the terrain very well. The kids got a free sample of cider, they got a small bag to fill with Jonathan apples and were allowed to pick one more to eat after their bags were filled. I'm amazed, actually, that Erica has never taken this field trip before. Preschool and kindergarten classes all over central Ohio make the pilgrimmage to Lynd's Fruit Farm (the largest apple orchard in Ohio with over 75,000 trees) but somehow her class never went until this year. We've been to the pumpkin patch before as a family, but I really do love the apples :) Now to try my hand at my mom's unbeatable pie crust while I still have my neighbor's peeler/corer/slicer on loan!

What if...?

Erica has a one-to-one aide at school, which enables her to be in a regular classroom. The aide fills out a daily report for me, and one of the sections I put on it is "interactions with classmates today." Today's entry warms my heart, so I thought I would share it. Here are excerpts:

T. checked us in...K. helped move chairs in the bathroom and washed her hands next to Erica, chatting with her...D. & J. & A. were literally climbing over each other to push her chair (at lunch)... we went outside and there were so many kids crowded around her that I heard a kid walk up and ask "what happened?"... T. & S. argued about who would bring her inside. I find the whole thing pretty funny - what if all people fought about was who could be a better helper for someone?

What if, indeed?

You're my best friend...

Who sings that song? Now it's in my head... wish I knew how to embed a tune into a blog post!

So Erica is actually excited about going back to school this year. What a difference a year makes!! Last year - transition to kindergarten - I'm sure mom's stress about it was noted and transferred to daughter, to some extent. She cried every night about having to go. She cried many mornings about having to go. By the end of the year, she was totally OK with it. Last night she had a hard time getting to sleep. She called me into her room around 9:30 and asked, "Mom - is school tomorrow?" I said "no, in 3 more days. Are you excited?" She said "yes." I thought, "praise the Lord!"

Tonight we were talking about what we need to do tomorrow to be ready for school on Wednesday. I reminded her about her kindergarten friends who will be in her first grade class (only four of them - I thought there would be more). She thought about her friends for a while, and then said, "Mom - you're my best friend in the whole wide world." I said "I'm very honored to be your best friend" and then I had two immediate thoughts: 1) how long will this last? how old will she be when she wants nothing to do with me? and 2) how I hope she one day finds someone *else* to be her best friend in the whole wide world!

The Miracle League

I just started a mini-album to document my daughter's participation in Miracle League baseball over the years. This was her fourth year to play. She has gone from being pretty darned apathetic about the whole thing to being excited when she wakes up on a "baseball day." I've completed a few pages so far from her first season, and seeing the smiles on the faces of her team mates and of the family and friends who come to watch her play makes me realize anew what a miracle the Miracle League truly is. It is one of the few opportunities that families have to bring their kids to a fun activity and then just sit back and watch them have fun - without having to get in and somehow facilitate their participation.

I went online to find a logo that I can use on the title page of her little album, and on the website for The Miracle League I found a video clip and a song by Eddie Kilgallon – sung by Montgomery Gentry - that I just love. I'm listening to it over and over as I write this post. Usually when I go online for the Miracle League I go straight to our local page with the schedule, etc. on it, so I have never come across this little song before. Enjoy! http://www.miracleleague.com/

A Perfect Day

At the beach in Ocean City, NJ. Natalie's first view of the ocean, her first beach experience. Erica has been telling everyone all summer long "we're going to the beach!" We're staying in Somers Point, across the causeway from Ocean City proper. So it's a short drive to the beach, not in walking distance. But the girls have enjoyed all the usual beach activities. They loved building sand castles, and jumping in the waves. We all gobbled Mack & Mancko pizza from the boardwalk for lunch one day, and sucked down fresh-squeezed lemonade.

My big indulgence was to schedule a photographer to do a family portrait photo shoot on the beach one evening. We wore those silly matching outfits, and I think they turned out really well - can't wait to see them online.

We borrowed a beach wheelchair from the city recreation dept. It has big balloon wheels and moves easily across the sand, not to mention avoiding getting sand into all the nooks and crannies of her regular wheelchair. There are issues with using it - it's very big and won't fit in the van along with her regular wheelchair, so while we are at the beach she is stuck on the sand b/c you can't use the beach chair on the boardwalk or the street. But it was worth the effort. Our backs can't handle holding her up for very long to experience the ocean, but I can stand out there forever and let the waves lap her feet while she sits in that chair!

Sitting under the beach umbrella after a long time in the waves, wrapped in beach towel, Erica sighed and said, "a perfect day." I guess that says it all.

Can you tell me how to get to Sesame Street?

Well, the vacation I've been planning for years has finally happened. We just spent two days at Sesame Place theme park in Langhorne, PA and it was a blast! It is smaller than Disney, of course, and even smaller than Cedar Point. All of the attractions are geared toward kids and the Sesame Street characters and songs are everywhere. My one fear was that Erica's semi-phobia of costumed characters would cause her to be looking anxiously over her shoulder the whole two days and prevent her from having fun. But not so - she did great... partly, I think, because the characters were all ones she knows and loves.

Accessible parking was right by the park entrance. All of the shows were in amphitheaters, so we always got to sit in the front row on the end with the wheelchair. A bit close for comfort to some of those characters, but again she did great. She was able to ride a few rides with me - we had a blast on the flying fish Elmos. We got a great curbside spot for the parade - I think I got some really good pictures of that! We had dinner with Big Bird and friends - lots of photo ops there and Erica didn't have a heart attack. Possibly the favorite activity of the visit was the lazy river on inner tubes. The girls screamed with laughter and excitement at every turn - priceless.

Sunny day, sweeping the clouds away... well on to the beach now!

On to first grade!

Well, I can't believe that the whole school year, plus one month of summer has flown by and I haven't posted again about kindergarten. It was a great year. Our IEP meeting went smoothly and I'm very happy with the results. After the turnover in the aide position, we got a fabulous person in the Spring who was so worth waiting for! She and Erica really connected - immediately. She seems intuitively to know how to motivate her and of what she is capable. Noelle gets her to wear her glasses. Noelle gets her to write her stories on the computer (not sure why she decided she didn't want to do this - seems like most kids would jump at the chance). Noelle gets her to USE THE TOILET!!!!! She has had dry days now and we are actually dreaming of one day saying goodbye to diapers. Most importantly, Noelle gets her out of her chair and moving... AND she gets her talking and interacting with the other kids in class, who now feel comfortable asking questions about her and therefore are more comfortable treating her like a peer. We are thrilled that Noelle will follow her to first grade, and I just know it will be another great year.

life balance

A fun thing that is moving around Facebook these days is "25 Random Things About Me." I saw it and immediately starting thinking about what I would say if I were tagged to make my own list. And, sure enough, I was. I really like reading little obscure factoids about people I already know. In writing my own list, I reinforced something I already knew about myself. It's really hard for me to be brief and to the point. Almost every random thing I wrote turned into a little story. I'm still finishing up the list, and I actually plan to go back and edit it to remove some of the explanatory storytelling from each item before I post it to my Facebook profile. I was actually putting about 5 or 6 random facts into each by expanding on the initial fact. It's 25 random facts, after all, not 125! There's nothing wrong with just putting a fact out there without giving the whole background to it. Let people wonder, right?

As I was nearing the end of my list of random facts, I noticed that very few mentions were made of my special needs parent role. I do make a concerted effort to maintain a balance between that and other aspects of my identity. From talking with other special needs parents, I know that it can take over your life. Some say that they no longer have friends outside of the disability community because their "old" friends just don't understand what their life is like now. I feel extremely fortunate to have friends and family who genuinely care about and understand Erica's challenges and appropriately rejoice with me in her accomplishments. And I actively pursue activities that renew my ties with those friends - a book discussion group, my scrapbooking hobby, a Bible study group and cruising around on Facebook, among others. I chose to make my blog ABOUT this particular aspect of my life, and I think that studied reflection is also healthy for me and contributes in a positive way to my life balance.

Whatever it is that consumes a large portion of your life and your identity, I pray that you find the right balance to maintain healthy relationships with the people you love and a positive outlook on life in general.