A big girl: The importance of age-appropriateness

Lucy isn't a baby anymore. She is a big four year old girl. I imagine that since her physical abilities have not progressed much past that of about an 18 month old, it is easy for others to categorize her as a baby. Literally, the last motor milestone that Lucy reached was learning to stay in sitting when she was about 7 months old, and even now that is not always as consistent as it once was. And, as a big four year old girl, Lucy has developed very reliable yes and no movements with her head. She uses these movements every day to answer questions. In addition, of course, to using her PODD and Tobii to makes statements, ask questions, etc. 

We don't read baby books to Lucy anymore. We read books for kids her age, and point to the words in the leveled readers to help her start to learn to read. I have been reading beginning chapter books to her for months.  Lucy doesn't play with baby toys anymore either. Admittedly, it is a mind-boggling task to figure out ways for her to play and toys she will enjoy, but we don't just fall back on baby toys because those are what she can (sometimes) physically manipulate. The other day we played Hi Ho Cherrio with an iPad app that has the spinner for that game and all she had to do was touch the screen to "spin" it. We play Mr. Potato Head using her Tobii, and baby dolls using her Tobii or PODD book. She loves to fingerpaint and color. She recently fell in love with My Little Ponies. We do a lot of things, but I strive always for those things to be age-appropriate. Even though Lucy's body doesn't let her do the things other four year olds do, we need to ALWAYS, ALWAYS remember that her mind is just like any other four year old's. She knows she isn't a baby, and she knows when people are treating her like one. 

Which leads me to a revelation I recently had that I'd like to share. A way in which I have been treating her like a baby and allowing everyone else to treat her like a baby is by just passing her around, to be "held", without hardly ever consulting her! How could I? That is what you do with a baby. Now, keep in mind, Lucy is a total cuddler, but she might not always want to cuddle. She might want to sit by herself. We do ask her sometimes, but not enough. And the thing about being four is that any other mobile, verbal four year old would just be able to squirm away and escape, and say they don't want to sit with anyone right now. Lucy should have that same choice. As I said, she has a concrete, and consistent way to say yes or no to sitting with someone, and she has the right to say so. 

And here are most of Lucy's chairs that she uses throughout the day which also includes the big chaise behind her.  I do often ask her where she wants to sit when it comes to these, but I could still ask more often. None of them are perfect for her, they each have good and bad qualities and it is important to have her in different positions throughout the day to try and keep her spine straight, so I think I take over the choice making in this area a little too much sometimes because of the spinal concerns, which is justified I think, but I could let her choose more. In addition to these there is of course her wheelchair.  We will have a ramp sometime within the next month going into the house so that then her wheelchair will be in here too as an option.  Most often when we are out and about Lu uses her wheelchair, but sometimes it might seem like it's going to be "easier" to just carry her, so we do. But...maybe she doesn't want to be carried.  Perhaps she feels more dignified when she can travel in her own chair, while looking like a big girl. 

I think overall Chad and I treat Lucy like she is four, just this area of where she sits, and with who, and when needs to be readjusted.  As usual, we are responsible for changing the way others think about Lu.  I think most people in our life have come to understand and believe that she is not cognitively impaired and that she is smart and understands as much as any other child her age.  I just want to implore everyone who knows Lucy or any other child with significant physical limitations, to not let what their bodies CAN'T do mold your ideas about what their brains, and hearts CAN do. 

This is Baby Lucy...

And this is Big Girl Lucy. Let's not confuse the two. 

"Puppies are good for the soul"

Before we got Maggie, our last puppy that was just too "rambunctious" and "energetic" (read: crazy and wild) for the Shaffer household, my friend Shelly said, "Puppies are good for the soul." And I thought, yeah, they are because I had loved Elmer (our first puppy who was hit by a motorcycle) so much. Well, while Maggie was/is a good girl, she was just too wild and needed more than we could give her, which equalled not being good for my soul AT ALL! She was more like detrimental to my sanity.  So, even though I was excited for Finn to come home when he was old enough, I was pretty much a basket case worrying that it would turn out like the Maggie debacle. As it turns out Finn is a dream come true! 

He has been the easiest to house train! In the five weeks that we have had him he has had one pee accident and only a handful of #2 accidents. He took to his crate almost immediately and is content to be in there when he needs to be. He has already learned: sit, down, and sometimes come. We are working on stay and with a treat he will go out to the bathroom and come running right back to me with no need for a leash. It took him awhile to walk on his leash and not be afraid of it, but he is doing much better and walks almost the whole time Mom and I are on our walk.  

My goal is that someday, not too far in the future, Finn will be able to just sit with Lucy and be her pal. Right now he sits with her, but I need to monitor his teeth the whole time as he is still mouthing everything and has sharp puppy teeth. But she really likes him, and he likes her.  So, even though our point in getting yet another pup was so Lu will have a little companion, it turns out that I fell in love with him, and since I am the "pack leader", he loves me too.  Someone has to be in charge of him and of course it is me because I am the one here all day (and I was the driving force behind him joining our family). I love having him around. And, at the end of the day, he's a good distraction for me when Lu is alseep.  I like to walk him, and train him, and have him sit with me at night. He is in fact "good for my soul".

15 years later...

This is me at graduation with my friend Elias.  I couldn't find any of my other graduation pictures for some reason! 

Last Friday I went to my nephew Wyatt's high school graduation. It made me think a lot about when I graduated 15 years ago. It made me think about 18 year old Julie sitting there waiting to start her brand new, grown up life, and how idealistic, and naive she was. I had a goal of becoming a Life Skills special education teacher. That was all I wanted to do, and so in my mind that was just what was going to happen. I believed that for four years until I did my block teaching and discovered that I actually hated being in a school all day, and I hated being responsible for managing a classroom of kids, but I didn't hate teaching, and I still loved kids, just not in such large groups! So, I changed my major, and finished with a Rehabilitative Sciences degree and moved on. I did a lot of interesting jobs: counselor for delinquent teens, TSS almost always for children with Oppositional Defiant Disorder, sexual assault crisis counselor, Early Intervention special instructor where I visited children in their homes, program manager for a community program for adults with disabilities, program manager for a sheltered workshop, and a family-based therapist. 

If I missed any, it doesn't matter. What matters is that life seldom turns out the way you expect, or assume it will. But, sometimes things do still go the way you wanted, but just in a very, very different direction. I taught those delinquent teenagers how to crochet in the evenings when we were just relaxing. For some of them it developed into a very useful coping skill. I learned a lot about behavior management while teaching children to manage their own behavior as a TSS. As a special instructor for children ages birth to three in rural Clarion County, I was able to teach them what they needed to be ready for preschool...and I learned about the cycle of poverty and had my eyes opened wide to the situations people in poverty live in sometimes.  As a family-based therapist I learned how to teach families to break unhealthy patterns that were destroying their lives. I learned to say hard things to people because they needed to hear them, and I learned how to teach them ways to be brave and move forward with life, even when they felt like there was no hope.  In the years between graduating from college and Lu's birth, I learned a lot, and taught a lot, but in no way near the ways I assumed I would when I was sitting back on the football field during my graduation. 

In those years I learned more patience than I knew I had.  I learned that people live in desperate situations, and I waded into their situations while mustering more courage than I ever knew I had because quite frankly, I had to do some scary things and go to some scary places sometimes.  I learned a lot of technical crap at each job that actually has been surprisingly helpful at times. (I hate the technical crap, I just like the "doing".)  I learned about how social service agencies really work and what a pain it can be just to help people or just to get help that you need. That insider info has been especially helpful in navigating through systems where I am just trying to get Lu what she needs. I think most importantly I have learned that I am a teacher and that I don't have to be trapped in a classroom to teach.

I have learned all of those lessons over the years and now I use them every single day to teach my sweet Lu. Sometimes I worry that we don't do enough "academic" stuff, but she is only four. Right now she is learning to communicate. That is what we do most of the day, but not like it's work, we just do it, and really, I see that as the most important thing for her to be "learning" right now.  I always like to share what Lu has been saying every once in awhile and lately she has been expressing some very important things. She often tells us what she wants, which is awesome! She has a new cute habit of asking where specific people are, and recently she has been a real super star at expressing her feelings, even during extreme emotional turmoil. Here are some examples of things she has said lately:

-Lu had been on a short bike ride with Chad before supper and afterward she started crying and it escalated to wails and sobs. When we got her to her Tobii she said: "I don't like it (x3), I don't want to do it, too hard, tired" We asked if she meant her bike and she said yes. And then she was able to calm down enough to eat supper.

-While eating breakfast: "(something's wrong), I don't like it, sick, mouth, I don't like it, bad" When I asked her if her mouth hurt she said no. When I asked her if she means how her mouth doesn't work well for her sometimes when she's trying to eat, she said yes.  Then she started a new message and said, "I don't want to do it, gross." I asked if her egg was gross and she said no, and then said, "I want to use my book. With her paper PODD book she said, "I think it's, bad, I can't do it" and she said yes when I asked if she was still taking about eating. 

-We were eating French toast one morning and Lu said, "(I don't like this, you, yucky, I want, something to eat or drink, stove, egg, my, you, hot" we the. Went through the "hot egg" choices she usually enjoys and I told her she could have what she chose (and egg sandwich) for lunch, and I made sure that was what she had. 

- "(something's wrong), itchy, my, stomach, angry" 

-to her Daddy at breakfast one Saturday morning: "I want, cuddle, yours, story, we, funny" he asked if she wanted to cuddle and read a story with him and she said yes!

- "I want, something to eat or drink, off, fork" I was feeding Lu supper and one things was with a spoon and one thing was with a fork and she was telling me she wanted the food I was giving her with the fork.

- "I want, something to eat or drink, cereal" she said this halfway through a piece of toast. 

- "I want, rest, cuddle" This is one of her favorite things to say. 

- "I want, mine, fingerpaint, blue"

- "where is, Jen, occupational therapist?" Jen is in fact her occupational therapist.

Besides learning that I am a teacher, and that everyday I get to teach the most amazing student I ever could've hoped for, I was lucky enough to find Chad, Lucy's other teacher who wants her to learn all of the same things that I do. We were so fortunate to find each other and realize how much our beliefs in life were the same, and that we should probably stick together. And as we stick together, we both teach Lucy everyday how important her emotions are to us and that we want to know what she is thinking, and feeling, and wanting all of the time. We are a pair of teachers that both 1000% believe in the abilities and potential of our student and therefore she thrives...and I can wear sweatpants all day while I love and cuddle her and take time out to do whatever we want while still learning to live all the time.

So, 15 years after graduation, I am not where I imagined I would be. I'm in a place better than I ever could've imagined back then. Teaching every day, just in the way I want to, to the greatest little girl I've ever known.

Garden school. 

Going Places

Going places... It just seems to keep getting harder and harder, both physically and emotionally. Here are the basics we might need IF we don't need to do a feed while we are out: wheelchair, Tobii, wheelchair mount for Tobii, PODD book, backpack full of diapers, extra clothes, snack, straw cup, chin dabbers for dribbling and drooling. If we are going out to eat we also need Lu's silverware that she's used to using, bibs, after-meal meds, and sometimes a tiny food chopper. And if we are going to need to do a feed while we are out then we also need her little backpack that holds her feeding pump, the bag with formula and other accessories.  It is exhausting. My goal is always to do my best to scope out situations and places before we go there to eliminate as much of the unexpected as possible and to hopefully avoid getting all prepared for something and then arriving and finding out a place is not accessible to us. It doesn't always work out for us though, and I understand that is bound to happen, but it still is hard to handle, depending on the day and my emotional stability on that particular day.

I joke sometimes about being a little "hermitty", but then sometimes I find myself out in the world and my tendencies to just want to stay home don't seem all that funny as I can get very overwhelmed by the world and I just want to go home. I know it's not a good thing. I am okay when we are going to a place that I know well, like the library. I know how we can get in and out there. I know the librarians, and they are so sweet and kind. We are just about pros at going out to eat, so that is seldom stressful.  There are a few other places that work well for us.  But mostly, home is what is most comfortable and where we can be most successful.

The thing is, we can't really keep up with busy gatherings, like birthday parties for others, and big picnics and things like that. We are just always lagging behind and so not really getting to participate like everyone else. Not getting to do things like everyone else isn't a new thing, but lagging behind everyone is something that has increased.  It just makes us feel like we're not really part of anything sometimes. In addition to that, the heartbreaking realization that the world is just not designed for people in wheelchairs has been becoming more and more obvious as Lu gets older, and heavier, and we want to take her more places. For example, we thought it would be fun to take her to Penns Cave and learn about caves beforehand...but it is not one bit wheelchair accessible.  There are TWO, let me repeat that TWO ADA (which stands for Americans with Disabilities Act) certified trails in state parks here in PA. Luckily for us, one is in Black Moshannon which is local, but the other one is in Warren. Lu loves being outside and enjoying nature, but her ability to do so is severely limited. 

It is my opinion that by not bothering to make a place wheelchair accessible, the owners are basically saying, "People in wheelchairs are not welcome." I don't mean personal homes of course, but public places that are meant for everyone to be able to enjoy. In the year 2014, would it be okay to leave any other group of people out of a place? Would it be okay to put up a sign at Penns Cave that says, "No homosexuals allowed" or "No children" or "No African Americans"?  Absolutely not! And even though there is obviously not a sign that says "No people in wheelchairs", by it not being accessible, it is certainly being implied. 

So, we nearly need a U-Haul (aka our minivan) to go anywhere. And then when we get there we may or may not be able to enjoy ourselves depending on the level of accessibility. And even if it is accessible, we will most likely be lagging behind everyone and just trying to help Lu participate in any way she can.  Most of the time I think we are real troopers about it and we just do the best we can. However, sometimes, like everything else, I just let it get me down. We went to a family picinic at Parker Dam over the weekend. That's what prompted this post actually. It wasn't an easy time and it wasn't anyone's fault, it's just how it goes sometimes. I cried the whole way home. It just was hard, and it is really hard to watch Lucy seeing what she can't do. However, she very seldom seems upset by it. And if she was, she would say so.  I guess probably because this has always been her life and she just accepts it as it is. I know I need to remind myself to take a page from her book sometimes. It is what it is. We can't go everywhere, we can't do everything. We can't keep up with groups of rambunctious children. We are slow and have to take mounds of crap with us everywhere we go. I know. 

Lately we have experienced some social situations that just make Lucy cry and cry.  It seems like maybe she is overwhelmed and she can't handle it and so she cries.  It is confusing though because situations that I think are going to be too busy and crazy for her are fine sometimes, and then other times when I don't feel worried at all she has a tough time.  So, lately we have been worrying every time we go somewhere where there will a group of people that Lu might get upset and we will have to leave. It just seems like sometimes her senses give her a hard time and she struggles with processing what is happening around her. 

 One final, and major obstacle that we face when it comes to "going places" is that Lucy is very, VERY rigid about bed time. It is just like her mind and body start saying, "Okay, that's enough for today around 5ish and she is falling asleep in my lap on the couch immediately after supper, around 6ish, and this is before she has had her Trazadone that helps her stay asleep through the night. If this routine is messed with, Lu can sometimes deal, but will often-times have a total meltdown.  There is nothing that makes her feel better until she is in bed.  So, the Shaffers pretty much don't go anywhere at night....ever.  And that's just how it is. 

I guess maybe I wrote this to help all of our friends and family understand what all goes into us simply showing up somewhere, not mention what we do once we get somewhere.  

The facts are: 

-We will usually be a tad late.  

-We will most likely need to leave early.

-Lu might get overwhelmed and cry without warning.

-I get tense sometimes because I am out of my comfort zone.

-If an event is after 5:00pm we won't be coming.  It is nothing personal, it just isn't possible for us.

-We need time to prepare for outings so we unfortunately can't just go somewhere at the drop of a hat.

-Lu has feeds at 7am, 11am, 3pm, and 7pm, so we need to always be working around that schedule. 

-Some places aren't wheelchair accessible so we can't go to there.

-And the #1, most important fact of all is that Lucy's comfort, well-being, and happiness are my very top priority, and we just have rules in our life that we need to follow to maintain as smooth of a ride as possible.  If those rules hurt anyone's feelings I will not apologize,  but I will ask that you try to understand how difficult it is for us to go places, and understand that, like I said, it's not personal. It's just what we need to do.  

Here is a homemade haircut I gave Lu after trying repeatedly to figure out a time I could manage to get her a mile down the road for a haircut:

Here she is enthusiastically riding her bike in our own driveway:

And here she is comfortably relaxing with her Daddy on our back porch:

It's just easier at home. I hate to leave, but I will for Lu's sake at least! 

"But what about socialization?!"

Any parent that has ever even expressed (out loud) a vague interest in the mere possibility of home schooling their child(ren) have inevitably heard the exclamation, "But what about socialization!" This is generally from some well-meaning friend or family member. But, they might be looking at you with an inexplicable fear in their eyes, like your child might become the next Unibomber or any other depraved lunatic you can think of, if they are not trained to "socialize" in the public school system, like most others are.  

You know, I'm just going to say something that crosses my mind a lot, but I only say out loud to Chad. Here's the thing about me and Chad: we have thoughts and views that are not always the most common, or popular, especially in our tiny part of the world. We don't go to church, we love Obama, we support gay marriage. We don't do Santa, the Easter Bunny, the Tooth Fairy or any other made up holiday character. We don't follow ANY professional sports, even though Chad is in fact a man! And, we don't plan on sending Lu to school full time, and maybe not at all. But most importantly, we believe in taking our time to think things through before we make a decision, so we know it is what is best for our little family, not just what people expect us to do. We believe it is really important for everyone to be able to make their own decisions in life without feeling pressured to fit into that round hole that I detest so much. 

With that being said, I also feel very strongly that the big old public school system is just not the best place for children to learn socialization. I read an article one time where a man talked about how he didn't feel that being in a room full of peers all day, who also do not yet know the best ways to "socialize", was going to be the best way to teach his children to become caring, responsible members of society. AGREED! Another phrase I have heard several times from homeschooling advocates is, "I socialize my dog, not my child!" Ummm...right on. I believe more in quality interactions than quantity. I believe that Lucy learning to interact with the world in positive and meaningful ways is way more important and effective than when she was in a busy classroom with other children her age who are just not developmentally ready to slow down and talk with her and wait for her to respond. 

In the past week, like I said in my previous post, Lucy interacted with a group of grown-ups that she had just met. How often are four year olds shy, hiding behind their parents, and not saying a word? And many of those children probably go to preschool or day care, or some type of organized place where so-called socialization is said to take place. Well, then why isn't each and every child who attends public school an expert at socializing? Why don't they all step forward politely and introduce themselves to new people while shaking their hands and smiling? I will tell you why: because public school is not the be-all and end-all of socialization. It is not the only way that children can learn to socialize. In my personal opinion, not only is it not the only place, but I don't feel it is the best place. 

Lucy has a small group of friends and a bigger group of loving cousins that she interacts with regularly, and by "regularly" I don't mean every day, and sometimes, especially in the winter, not even weekly, but I still think it is enough. She has initiated conversations on her Tobii with the librarians at the public library. She talks to her therapists, grandparents, and me and her dad all day, everyday. We go to story time at the library. When she decides to part with her own special purse money that is hers to spend, she pays for her own purchases. Oh, and SHE IS ONLY FOUR.

You know what, Lucy slept with us for awhile when she was a baby, just whenever she seemed to need to, and I never worried about it even though people would act like we were creating a problem. My view on it was always, "When Lucy is 20 she won't still be sleeping with us." I always feel confident that with time things will work themselves out and that we don't really need to get ourselves in a panic when something might be taking longer than is "expected".  I didn't go to preschool. Many people my parents age didn't even go to (gasp) kindergarten! The compulsory school age in Pennsylvania is 8!  Finland is consistently ranked one of the best countries in the world for their education system and they don't even begin formal education with their children until they are 7. They take one standardized test when the students are 16, and their scores are consistently among the highest in the world. So, not only does Finland not believe that they need to start formally educating their children from the womb, but they also obviously do not think that a lack of formal "socialization" is detrimental to them, specifically in the early years. My thoughts on our educational system could be another post on its own, and the point of this one is not to even address it other than to point out that other places in the world let children "be" longer, and do not act as if the world is ending if they are not enrolled in preschool when they are three.  

My main point is that Lucy doesn't go to preschool, and isn't going back to preschool, and Chad and I feel like we really aren't that interested in sending her to school ever again... and she will be fine. We are pretty competent people and we will make sure that she learns to interact and socialize with others.  There doesn't need to be a mad rush for it to happen immediately.

Look, here she is socializing in the comfort of our own home with her sweet cousin Ava! And we didn't have to go to school, get a cold, worry about pneumonia, and take two weeks to get better. I don't think it looks like she is suffering from her lack of preschool time, and I think she will be fine. 

Happy Birthday to Lu!

Tuesday, May 20th Lu turned 4! Last Saturday we had a nice party for her that was pretty busy and crazy, but she smiled the whole time! Here are some pictures from the party which had a theme for the first time and Lu had chosen a super hero theme:

We had a lot of fun and I think so did all of the other kids. Then on the day of Lu's birthday we went to see her Daddy at work and got to meet some of the kind people that bought her bike for her! She giggled the whole time and was so friendly with all of the strangers. At one point she was surrounded by about a half dozen men and she chimed in on a joke they were making about her looking at one man in particular and she said with her Tobii, "I think it's, funny!" And then a little later she said, "Let's go!" After the Minitab visit we took Lu to Ruby Tuesday for a birthday cheeseburger. A week or so before she had said with her Tobii, "Let's go, in the car, Ruby Tuesday"! So to Ruby Tuesday we went! 

Here is a picture of Lu outside of Minitab wearing her brand new, handmade, super hero dress from my good friend Ann:

So our big girl is 4. Every day I look at her and can't believe how old and big and not at all like a baby she looks!  Right now she is super-healthy, happy, getting stronger, and making progress every day, so what more could we ask for! 

Thank you friends at Minitab, Inc.

When it comes to buying gifts for Lucy for Christmas and her birthday, I try to not go overboard. I follow a guideline of buying her: something she wants, something she needs, something to wear, and something to read. And the majority of her gifts are seldom brand new. I get her great things from the local kids consignment shop, Kid to Kid, or Ebay if I'm looking for something very specific. For example, Lu's birthday is coming up and here is what she is getting from Chad and I:  Want: a big bin of miscellaneous Mr. Potato Head pieces that I found at Kid to Kid. I will put pictures of them all in her Tobii along with the others she already has in there and then she can play just like other kids, it is one of her new favorite things to do. Need: A new life vest that will help her float on her back in the pool and kick her legs, Wear: a new bathing suit, Read: a dinosaur encyclopedia, a Princess Tiana beginning chapter book (because we read one about Ariel from the same series and she loved it), and a Martha Speaks chapter book with great pictures (those are a great series also for kids who are starting to listen to chapter books, very colorful!) all used from a site called Thriftbooks.com. So, my point is, I try to not overwhelm her with "stuff" and the acquisition of stuff. Experiences are what I think are even more important and she has certainly become rich with new experiences in the past few days!

If you read my post from a few days ago you know that over the weekend Lucy got a new puppy named Finn, and her wish from Make-A-Wish was delivered which was an adaptive swingset for in our yard. Well, a few weeks ago Chad got a big surprise at work when his supervisor handed him an envelope with enough cash in it to buy Lu the adaptive tricycle that she did not win in the Great Bike Giveaway in March! His co-workers had decided that they really wanted her to have that bike and so they took up a collection just amongst themselves and raised $1500 for Lu to have her own bicycle! And it came this week! 

It is so exciting and so amazing to see her legs go round and round! And we are so excited for her to be able to ride bikes with the other kids, just like any other kid can! I think like in many other situations, unless you are raising a child with disabilities, parents seldom think about the luxury they have of just being able to zip over to the local Walmart or Target and grab a tricycle for their little one. Or the luxury of knowing they can buy them any old swingset and they will be climbing the ladders over and over again to get to the slide.  I can't even buy Lu's shoes at a store most of the time because they have to be wide or extra wide to fit over her braces. 

And because of what I just mentioned, it makes the generosity of Chad's co-workers so touching and just so amazing to us. Because they took the time and effort to realize that Lu would like to have a tricycle like other 4 year olds and we weren't going to be able to just run to the store and get her one. Chad works at a great place that obviously also makes it a priority to hire great people. We are completely blown away by this surprising and generous gesture and will be forever grateful that Minitab and such wonderful people are a part of our lives. 

I guess I look at it as Lu still isn't being spoiled by "stuff" but her life is being enhanced by experiences that without the help from all of these kind people she wouldn't have had. I keep telling her that she is the luckiest girl in the world. Rett Syndrome aside, she is surrounded by people that love and care for her.