Monday, January 31, 2011

Day 35: Graduation

As an adjunct professor, I've taught about 8 years worth of graduating students. Over the years, I've observed that the student reaction to impending graduation has varied, mostly depending on the state of the economy and the overall character of the class. Some years are simply more optimistic, or more driven than others. But, no matter the character or the climate, the graduation jitters are a universal truth.

Each semester, beyond the class description, and beyond what the university asks of me, the students ask for something more. My job (especially in the spring) really isn't just about design instruction and portfolio coaching, it's a little bit of life-coaching as well. One-on-one meetings with students start out about class issues, but quickly reveal that they are about something else. Familiar themes emerge: A feeling of being overwhelmed by the amount of work. Anxiety over interviews, job prospects, having choices, and making the right decisions. Fear of rejection. Confusion about what they should do next, whether or not they have a job waiting beside their diploma.

Honestly, I love this part of my work. By talking to the students and giving simple, practical advice, I can see instant results. I may not have solved all their problems, but they know they aren't in it alone, we've all been there, and they will be okay. I can see their shoulders relax a little, hear their breathing get easier, and sometimes even dry some tears.

While my advice always depends on the student, there are common threads that apply to everyone: When you feel overwhelmed, take a deep breath, a time out. Make a list. Prioritize and put things into perspective. To make the right decision, think about what you ultimately want from your career five years from now, and make the choices that support that path. When you need help, ask for it, and show gratitude. Remember everyone likes to feel appreciated. If you do that, they will be willing to help you out again in the future. If you are at a loss, or haven't found a position yet, don't give up. Keep working, keep going in the right direction by studying, practicing and even volunteering on your own, and eventually you will find a reward for all your effort. Look back and reflect on how far you've come, how much you have accomplished and you will see that I am right.

Today, Simon graduated from the CIMT program. At times, throughout the month, we felt overwhelmed by the intensity of the program -- the casting was scary, the frustration tough, and the schedule challenging. We worried that we wouldn't be up to the task when it came to homework. We had anxiety over testing and evaluations and outcomes. We didn't know if we had the right tools, or the right skills. We constantly questioned whether we made the right decisions, and we wonder where we should go and what we should do next.

So, I'm taking my own advice.

Throughout the program, when it was tough, we took deep breaths, and time outs, and made priorities to make it work. We took turns, we made lists, we put things in perspective.

Now, as we are presented with choices about where to go next, about what therapy and programs to pursue, about how to alter Simon's IEP, about what questions to ask which doctors, I will think about where I want Simon to be six months from now. Thanks to this program, we've seen some of what he is capable of when we do have the right program in place, and the right guidance and support.

When we needed help, it came to us in many forms and I am so grateful. My parents helped with moral support and financial help. My mother and my sister cheered us on every single day. Truly unexpected is that through the media of this blog, I've felt closer relationships, especially with my dad. Like most father-daughter relationships, we don't talk as much as I wish we could, and knowing that he is faithfully reading every day has been touching and comforting. Through the blog I've also had outreaches of support, prayers, happy thoughts, and helpful feedback from family, close friends, acquaintances, and people I don't even know. I'm grateful to each and every one of you.

I'm grateful to Simon's teachers and school therapists for their patience and support and willingness to adapt to new ideas from an external source. And, of course, I'm also grateful to the amazing staff we worked with at KKI. We have learned so much, and I feel that the door has opened to many more opportunities for Simon to grow, learn new skills, and become closer to fulfilling his expanding potential. I felt a kindred spirit in the OT there, and I am thrilled that she will be helping us a while longer and continuing to point us in the right direction.

We will continue, of course, to research and study, to practice our skills and look for opportunities to help Simon and other families like our own. I find myself wondering if all that I've written here over the past 36 days is really the beginning of a book, a way to find other Laura's and Brian's and Simon's and share our knowledge and laughter and tears. Maybe.

Most of all, as I look back, I see how much Simon has accomplished. I am so proud of our little boy. Of his patience, his determination, his willingness to move forward and work within such heavy constraints. His ability to play and be happy and just be a kid day after day within such difficult and sometimes uncomfortable constraints. The mind-blowing and incredibly inspiring progress he has made. I cannot wait to see where he will go next, and I know I am privileged to be a part of it.

Today, at our last meeting of the CIMT program, we reviewed notes, and thanked and hugged our therapist, who will be in touch soon. In just a few weeks, we should be back to continue our work on self-care, pre-writing and other targeted tasks. As we left the building, they didn't hand Simon a diploma, and I didn't buy him the customary balloons or roses. 

Instead, we went and got a turkey sandwich for our little miracle.

Day 34: Baby Shower

Yesterday, after the baby shower, I crashed. I think lack of sleep for a few days finally caught up to me. This was unrelated to the party -- it has more to do with a snoring husband (he has a cold) and a little person wanting his cymbals at 5 am every morning (He's pretty happy to have both his hands back. The cast was inhibiting his percussion sessions). So, I apologize for the post lapse, if anyone missed it.

Yesterday was my sister's baby shower, which I've been planning since Christmas. I love a theme in general (I am a graphic designer) and I was pretty pleased with the theme I put together for the shower-- "Baby Love" where I combined some blue birds of happiness (since the baby will be a boy) with Valentine's Day decor and candy. I even found conversation hearts that had baby-themed messages like "rock a bye," "little angel,""big hugs," and "cutie pie." (I bought way too many of those. They're cute, but nobody eats them. If you happen to eat them, let me know and I have about 5 lbs of pastel hearts I can send you. Note the jar, below -- it is still THAT full!)




Overall, it was a great party. Great turn out, and LOTS of presents for the new baby. My sister looked both happy and radiant (in that glowy way only pregnant women can) as she opened (with Olivia's, um, assistance) package after package of adorable baby clothes, toys and gear.

It's pretty impossible not to get nostalgic when you're ooh-ing and aw-ing over all that sweet baby stuff. A couple of people even brought their babies with them to the shower, and I got to get my fix with a  quick cuddle here and there. I'm really thrilled for my sister's new baby, if for no other reason than the fact that I can get my "fix" more often. Is there anything like baby breath on your cheek, while you breathe in their sweet baby smell? Not for this mommy, there isn't. I don't even mind crying and diapers. I'm immune.

So, why aren't I having another one? Well, first there's the simple matter of numbers. We're at our max on all economic, space, time and staff fronts. I can't imagine that it would be a good thing for us to be outnumbered, we perfected the divide-and-conquer technique way too well for that to change now. I also like sleep (when I can get it), and I like fitting into my skinny jeans (after I stretch them out a little).

But, there's another reason. The truth is, through planning this shower for my sister, I realized something very personally positive. I found amid all the planning that, for the first time since Simon was born, I was completely happy for someone about to have a baby. Up until now, though I'd never TELL other expecting moms that I was fearful for them, or even a little jealous when they had a perfect healthy baby, it was there. My dark secret. It made me feel like a bad person to have such feelings. I was ashamed to admit that I hadn't gotten over the trauma of Simon's birth, though I love him wildly and know how much worse things could have been. My fear and sadness colored every interaction I had with pregnancy and childbirth. The truth is, it took almost five years, and I can let go of it now, but I can't go through it again.

Aunt Jenny (now a mom-to-be) holding Simon on his birthday.

Saturday, January 29, 2011

Day 33: Self-care

It's the little things that sometimes make the biggest difference.

I've mentioned before that I am lucky in my friends. This morning, very early, two of my oldest girlfriends met me for breakfast at a diner because that was the only time I could find for myself this weekend. As I apologized for making them schlep out so early (one of them just got in from NY at 2 am), they very sincerely said that they were just happy to see me and if that meant losing a little sleep it was no big deal.

I got enough warm fuzzies off of that to last me through the month.

Later on, Simon demonstrated his best attempt at self care yet. He undressed himself at bath-time, using BOTH hands and needing minimal assistance. He even put his clothes in the hamper (now, if I can only teach his dad that trick...).

Simon was very pleased with himself, and we applauded after each garment was removed, down to his sweet little socks.

Friday, January 28, 2011

Day 32: Extension


Another snow day. All told, this week the kids have only had one day of school. And, in my opinion, today was the ickiest snow day yet. All day long it was sort of snow-raining with the kind of frigid dampness that permeates your bones and refuses to budge until you at least ingest two cups of hot cocoa.

So, the kids stayed inside with me all day. I'm afraid that I wasn't the most fun or stimulating mom today, either. Between trying to keep work afloat (two client calls from inside the bathroom, many emails answered, plus one rush invite out the door!) and getting ready for my sister's baby shower this Sunday (3 dozen red velvet cupcakes with raspberry filling baked! 4 dozen sugar cookies rolled out and sprinkled! Decorations up! Pasta sauce made!) I was a little bit distracted. I wanted to clean the house too, but I figured that cleaning anything on a day when the kids are stuck indoors would be a bit like trying to shovel the walk during a white-out.

Fortunately, the kids kept themselves entertained. For gross motor stimulation they took down the balloons I had carefully placed as baby shower decor and chased each other around the house with them. As a fine motor exercise they stole cookies very quietly from the counter top using both a strategic pincer grasp and well planned supination (I pretended not to notice).


The day wasn't a total educational loss, though. This morning Brian and Simon DID make it to KKI. It turns out that today was NOT to be Simon's last day of the CIMT program. They want him to have five full days of bilateral therapy, so we have an extension through Monday. I'm not complaining. I'm hopeful that Monday will be a normal school day (please God!) and, as soon as I get Olivia off on the school bus, I will rush to KKI to squeeze as much information out of the OT and the PT as possible before we're totally finished.

Although, even then we're not going to be really totally completely finished. As soon as we can sort out our insurance's therapy benefit (Fun with Insurance! I'll save my health care rant for another post...) for continued outpatient services, we should be on board for once a week OT. Initially it will be with the same OT we are currently seeing, then possibly transferring to an OT in the KKI Outpatient Center (right now we are a part of the Specialized Transitional Program). I'm really glad we can continue on in some fashion, we've made so much progress, and learned so much about Simon over the course of the last month that I truly believe that more will be very beneficial (hear that, Carefirst?).

Speaking of things that should continue, I think that I will continue the blog. Not on a daily basis (aside from the kids and husband, I already have two jobs and when classes start next week I will be lucky if I have time to think, much less write down cohesive thoughts), but at least once a week. I had originally intended this journal to be a contained project, with a finite beginning and end. But, let's face it, life isn't like that. Our story isn't like that. As a commenter on yesterday's post suggested, I have learned a lot through this process, and I do think that I have more yet to learn. Going back and reading about Simon's progress - our progress, makes me appreciate where we have been and where we are going in a very tangible way.

Not to mention the fact that it is kind of fun.

Thursday, January 27, 2011

Day 31: SWEET!


"Sweet!" was Simon's word of the day. Where he picked it up, I have no idea, but it has become  his exclamation of choice.

"Sweet!" was the extra cookie I gave him after lunch, "Sweet!" was when Mommy joined him to play outside in the snow, "Sweet!" was the Elmo Monster Maker App I downloaded purely for his entertainment this afternoon, and, sweet was the day we had.



Despite the somewhat unexpected foot of snow we got last night, Simon and Brian made it to KKI this morning, albeit it a little late, for therapy. His regular therapists were snowed in, but we wanted to make sure that he gets as many opportunities to work with the KKI therapists as possible during these final days of the CIMT program (I still can't believe we are finished, and I'm a little sad to be finishing both this amazing program, and this blog, tomorrow).

Following therapy, it was pure snow-day fun around here. From cookie baking, to snowman making, to napping on the sofa with Daddy, we had all the wonderful that winter can provide, well past the date I would have told you I was tired of the cold and the snow.


Sweet.

Wednesday, January 26, 2011

Day 30: iSimon

It was another snowy day here, so I'm grateful that KKI doesn't seem to close for anything short of a blizzard. While Olivia and I lounged about a little in our PJ's (what else is a snow day good for?), Brian and Simon braved the weather to get to "school" early this morning.

At KKI today, they were working on pre-writing skills, and (once again, for the first time ever) Simon did well with it. Now that we understand a little better how Simon "ticks," we are able to utilize that information to introduce concepts to Simon in a way that not only makes sense to him, but that enables him to maintain his attention span and participate more fully in the activity.

First, the Therapists used a gross motor exercise with sticks held in each hand to help Simon coordinate the necessary movements (today they worked on up and down strokes). Then, they incorporated one of the iPad apps that teaches kids to trace letters with their fingers.

[ On a side note, the iPad has definitely been a hit thus far, both with Simon and with his therapists (not to mention the fact that Olivia loves to sneak off with it for spells, and I've seen Brian spending more than a few minutes playing with it after-hours). ]



The app "iWriteWords" is one of several I've found targeted towards early education and/or special needs. It is really cute, and the Therapist said that she thought it was great from both a fine motor and a pre-literacy perspective. Simon is certainly a lot more motivated to trace letters on screen than with a crayon on paper. I think it is both easier for him to do, and with the accompanying music and graphics it is stimulating enough to keep his attention focused on the task at hand.

How freaking cool is that?

Really, it isn't so different from when Olivia was 2 and I was looking for schools for her. She was way ahead of her peers developmentally, and it wasn't until I observed a Montessori program in action that I felt I'd found an early education philosophy suited to her "special" needs. For Olivia, Montessori fit like a glove, and the school she attended felt like a second home to her. It was hard for me to accept, when it was time for Simon to go to school, that he wouldn't be able to go there. I so wanted him to have the same wonderful experience his sister had, and it broke my heart to deny him that. Fully accepting that he needed special education was a very difficult pill to swallow at first.

But swallow it we did, and I am glad. He's currently in a lovely program with warm and supportive teachers and therapists that clearly love what they do and the children that they do it for. Despite the diverse challenges of the students in his little classroom, the overarching feeling is one of love and acceptance (even for their harried parents).

What I am realizing now, is that in addition to the special education he is getting at his "home school," Simon needs more, specialized therapies and/or education on an ongoing basis to help him reach his potential. Where we go from here, I am not sure yet, but if the events of the past month have been any indication, I do know that it is a positive step in the right direction.

Tuesday, January 25, 2011

Day 29: All Mixed Up


This morning, Simon's OT (who isn't sick anymore, yay!) made a special arrangement for us to observe her and Simon doing therapy in the kitchen, which is inexplicably the only place in the program with a 2 way mirror.

It was great to watch the OT and Simon in action. She guided him through his snack, from getting it out, to eating it (without choking), to cleaning it up, all while using both his hands. He needed several reminders to incorporate lefty, and it was really helpful for us to observe the variety of ways she managed to do this without losing the interest and cooperation of her little patient.

After snack, she and Simon played a couple of Wii fit games. She had him hold a controller in each hand so he could race himself in a split-screen jogging game (genius!). Brian and I were cracking up (quietly), and we cheered when a very excited Simon was even more excited when his left hand made it across the finish line (long after righty, but hey!). Next, the OT attempted to get Simon to work on some weight bearing on his hands with the balance board. This was a good idea, but Simon was a little confused about how the balance board was supposed to work (he kept lying his head on it like a pillow). He also thought that the action on the game was really funny when he lost -- the penguin on the iceberg fell into the water with a big "splash" -- so he didn't really see the point in helping the little penguin stay ON the iceberg.

At the end of the session, the OT finally shared the results of the Sensory Processing Evaluation we filled out a couple weeks ago, along with her observations of Simon. The diagnosis is that Simon is indeed Hypo-sensitive, and Sensory Seeking -- on the extreme end of the spectrum. The bad news is, because Simon is involved in so "polar" a way, the disorder seems to affect him in most areas -- his ability to work, play and behave in a "typical" way are all inhibited. The good news is that because Simon's symptoms are so clear, the treatment is pretty clear. In other words, having a direct target will allow us to nail it with greater precision and (hopefully) yield greater results.

So, no surprises. This diagnosis was pretty much what I anticipated following our initial conversations with the OT, and my subsequent research. I am glad that we now have an umbrella to cover the myriad issues we were trying to address and cope with individually, and I'm glad that we now have a better direction to look in when seeking to target treatment. But, let's be honest, it is never a good day when you hear that something is definitely "wrong" with your child. Or, maybe I should say, something ELSE is definitely wrong with my child.

And so, today was a mixed sort of day. This diagnosis is by no means the end of the world to us (remember the frogs in boiling water analogy from a few days ago?), but it also isn't the "HE'S CURED!" we always secretly wish to hear. Simon did well with the casting, and he gained use of the left hand that he didn't have before, but I can already see what a struggle it is going to be to get him to maintain the "gains" he has made. Simon has a clear path for treatment, and our amazing OT at KKI has found a slot to see him on an ongoing basis, but that also means more therapy and more craziness in our already crazy schedule.

And, the truth is that I'm tired. Tired makes me a little less positive, a little more fragile overall. A slightly stressful workday has sapped my resources, I hurt like heck from pulling a few muscles in yoga (twisted bird of paradise can do that to a person), I spent my evening doing math homework with a somewhat truculent second grader, and Simon in his overwhelming joy to have two strong hands played the cymbals -- for two WHOLE hours. I didn't have the heart to stop him, even though it got old after the first hour.

So... Brian is finally home from work (at 8 pm) and the truculent second grader is reading aloud to him from Harry Potter as he eats the cold macaroni and cheese I saved him. Thank God for co-parenting, because I'm going to go have a glass of wine, lie in a hot tub, and simply try to soak it all in.

Monday, January 24, 2011

Day 28: Cast-away


Today, Simon had his cast removed. Not just for a skin check, but for good this time (or at least until we repeat the program at some future date). For the rest of this week, the team will be working with Simon to practice bi-lateral skills, so that moving forward Simon will (hopefully), not simply revert back to using his "good side" for all tasks, but will actively engage his left side as much as possible.

Weirdly, I'm a little sad to see it go. I feel that, though he has made steady progress throughout the program, it was just in the last week or so that he'd built the strength and coordination necessary to use the limb for any meaningful task. He went from simply being able to rake and swat at objects, to being able to pick things up, isolate fingers (sort of), and actually PLAY with toys again. It makes me wonder what he'd be able to accomplish within another four weeks.

It is also just in the past few days that we've noticed what seems to be a slight shift in Simon's speech.. or maybe, more accurately, in his ability to interact, to communicate. For the first time, ever, when I called for him, he REPLIED. When his sister fell down yesterday, he ASKED HER if she was alright. He said that! "Are you alright?" Sunday morning I had the closest thing to a conversation I have ever had with him -- he said he wanted to get tickets to go on a train. Being playful, I asked him where he wanted to go, not expecting any sort of reply. Without hesitation, he told me that he wanted to go to the beach with mommy and daddy. Surprised, but wanting to keep it going, I asked him what we would do at the beach. He said we would have a picnic.

For years, I have longed to talk to my little boy. To ask him what his favorite color is. To tell him when his birthday is coming and find out where he wants to have his party. Does he want Pirates or Elmo on the party bags? I want to plan a trip to Disney with him, the way we did with Olivia when she turned five, and have him understand enough that the anticipation will keep him up at nights and drive us all a little crazy.

To comprehend, and be comprehended. To begin to explore all the wonders of childhood that require communication to be fully understood and enjoyed. I want to be able to show Simon how wonderful the world can be, how beautiful and exciting and fun it is to be a kid before his childhood is over and we all have to grow up too soon.

As I write this I find that I am literally holding my breath. We're on the edge of a precipice and I want to take Simon, hold hands and jump. Can it be that the connections we were hoping for are happening? How freeing that would be.

Sunday, January 23, 2011

Day 27: Like Frogs in Boiling Water

I read once that the average amount of close friendships that most people retain from high school is one, and from college is two. I have no idea if this is true, but if it is I can consider myself very lucky. I've also read that women who maintain a circle of good friends have significantly less stress, are generally healthier, and may even live longer.

Well, duh.

It is no surprise that women deal differently with stress than men do. Anyone who has ever been in a fight with a husband or boyfriend can tell you that. While men generally look for a way to fix things, women seek a net of emotional support. According to recent research, this has to do with ancient survival instincts -- for example, when the clan was being attacked by saber-tooth tigers, the men were driven to go out and kill it, while the women were driven to band together to protect their more vulnerable children and aged, as well as one another.

We may not be facing saber-tooth tigers these days, but I know that through lots of problems with big sharp teeth my friends have been there. By talking (and laughing) about what we have each been through, are going through, and what we have dreams and nightmares about, we're able to band together and find both comfort and protection from the wild unknown around us.

Last night I took a much needed break. I had the pleasure of enjoying an amazing dinner in a lovely restaurant with a group of even more amazing and lovely girlfriends who I've known since college. While enjoying the meal that none of us had to make or clean up, we were (of course) talking about parenting. Each of us checking in on each other's babies (even the really big ones), and sharing in the troubles and triumphs we've encountered since we were last together. One of my girlfriends recently had her first baby, and in talking about the experience of childbirth she compared it to being like "a frog in boiling water."

I have no idea if you've ever heard this particular colloquialism before, but I hadn't, and I just about snorted my Malbec when I did (graceful, I'm not). My friend went on to explain that some twisted biology experiment involves putting a frog in a pot of cool water, then gradually bringing it to the boil. Apparently, when the frog has the chance to adapt to the heat little by little, he never even notices that he's being cooked (until it is too late). By comparison, when you take a frog and chuck the little hopper into a pot of already boiling H2O, he registers the shock and jumps out in time to preserve his green little skin.

My friend was comparing this experiment to the gradual build of contractions.. saying that by the time you're ready to have the baby, you're okay with the intensity of the experience. I think I can go one further with this analogy and compare it to the entire arc of parenthood.

Little by little, through incremental events of crisis and conquer, we raise our babies to become adults. Real, hopefully well-adapted, fully-functioning PEOPLE. We find that situations which would have seemed impossible to bear, just a month or so before, become things we can cope with.

I know that for me, this is especially true. While sometimes it may seem that life with a child like Simon is a bit like a snowball turning into an avalanche barreling down a mountainside, it's really a bit more like being a frog.

The weeks ahead promise to be both challenging and enlightening. It will be our last week of the CIMT program at KKI. We'll be getting a more specific, formal diagnosis on the Sensory Processing Disorder, and recommendations on where to go from there. We have more evaluations to go through, for OT, PT, Speech and Neuro-Psychology. We have appointments with multiple doctors, and I need to schedule an MRI that I put off until after this program, to check in on the shunt, and the brain damage, and any sequella from the status epiliepticus seizure. I'll need to request a new IEP meeting with Simon's school, to share all my new knowledge and ask for their help in implementing recommendations into Simon's educational plan.

It may be getting hotter, but I'm adjusting. I wouldn't jump out even if I could. And to all my girlfriends (whether or not we've met) come on in, the water's fine.

Day 26: The Substitute

So…  Today, we are going to try something a little different.

Laura is taking a much needed girls-night-out with her best friends. So she asked me to fill in for her. For those of you who don’t know me, I am Laura’s husband Brian.

Like Laura, I am a graphic designer/creative director and a devoted parent. But, unlike her, I do not possess the skill for telling stories from the heart the way she does. So I suppose it seems appropriate for me to fill in tonight by talking about the iPad we got for Simon today.

In the past three years the number of Apple devices has expanded quite a lot. Since we got married we have gone from one iMac that we shared to an iMac, an iBook, an  Airport Express wireless network, an iPod, two iPhones, and now an iPad. In our field, the Apple platform is industry standard, and to say we are loyal customers is an understatement. So, adding the iPad today was pretty easy since we already use iTunes and have our Wi-Fi network set up. For those who don't use Macs, iPods and the like, I can imagine the experience might be a bit more daunting.

Thanks to the generous gift from Simon’s caring grandparents, we made a trip to the local Apple Store today. Olivia and Simon enjoy visiting it from time to time to check out the new kids games. There are a few options for the iPad to choose from and the top of the line model is not cheap. They start at $499 for the 16GB model which uses Wi-Fi to connect to the internet, and goes up to the top-of-the-line $829, 64GB model using Wi-Fi + 3G.

Considering what and who this was for… we went with the basic model.











Since the iPad is an elegant and fairly fragile device, we also needed a protective case. The Apple Store has many nice cases and accessories for the iPad, none of which are appropriate for the wear and tear a 4-year-old would put it through. Fortunately, we found the perfect solution at Best Buy. The OtterBox, Defender Series case for the iPad, $89.99. It comes with a very sturdy rubber outer case, an integrated display stand and a protective film for the glass. Well worth the higher pricetag,  because God knows this thing will eventually get dropped. And when it does, it will survive!



So far, so good. The iPad set up was pretty easy. I was able to load up a bunch of the aps Laura had researched and even a few videos that Simon likes. He tried them out before bed tonight and seemed to be pretty interested. Some of the aps on this thing are pretty cool. 

I walked him through a flashcard ap we found—free by the way. Simon rattled off a lot of the objects and letters without trouble. It was a fun way to engage him in learning and really helps him to utilize those fingers. 

I can't wait to see what he can do when he has the use of his good hand.

Friday, January 21, 2011

Day 25: Please and Thank You

Today started out badly. I missed my yoga class because of the awful weather, the kids were wild (yay, snow!), and I was cranky and stressed. I had much to do, but school was 2 hours late, blowing my plan to be super-productive before heading to KKI to discuss this week's "homework" into fiery bits. In trying too hard to multi-task, I managed to get nothing done. To top it all off, I got into a spat with my mom about a shower I'm planning for next weekend (she was trying to help, but in my over-wrought-control-freak state, I perceived it as criticism. I tend to do that under stress...).

I think many of us walk around in a state of perpetual angst. Too much on our "lists" and never enough time to accomplish it. Too many commitments and not enough free time. We "super moms" make a vocation out of being over-scheduled, over-committed, and (let's be honest) what we view in a proud and slightly snub way as over-needed. I've seen more than one to-do list throw-down take place between super women and it is NOT pretty.

Yet, we bristle at the slightest suggestion that we need help.. We smile and nod and say thanks, but secretly wonder if the offer hides the suggestion that we are somehow not adequate. Not as needed as we need to be.

I teach my children to ask when they need something. Personally, I love nothing more than when I can help someone else.  So, why is it so hard for me to ask for and accept help when it is offered? And when I clearly need it?

I've been long overdue for a good cry. So, when my mom called to apologize (despite the fact that I was the bristly one), and to tell me that what she really wanted to talk about was an offer from her and dad to help Simon get an iPad sooner (she and Dad are blog-readers; Hi Mom! Hi Dad!), I bawled. I also said that I appreciated her offer, and was grateful, but we'd get it eventually... no worries...

And then I hung up and cried some more.

Fortunately, my family knows me well, and simply attacked with the help this evening. Tomorrow, we will be able to take Simon to get the exciting new tech. I really am glad and grateful that we will have it in hand this last week at KKI, so they can help us to start finding strategic ways to work it into Simon's learning and self-care routines.

My friends know me better, too. When I was falling apart this Fall, but stoically refused offers of help, they simply delivered meals and took turns checking in on me.

I try very hard to make a practice out of being positive and grateful. A long time ago, someone told me that you can only have a bad day if you let the day be bad. That just because something goes wrong, you don't have to get sucked into it. You can think about good things, and believe that at any point the day has as much promise as it did when you woke.

Today ended much better than it started, and for that I am grateful. I often ask myself how I got so lucky. But maybe I should also ask why I can't have the grace to let others in when all they want to do is love me, and my family. I know how to say thank you, but what I need to learn is to say please.

Thursday, January 20, 2011

Day 24: 21st Century Digital Boy

The first thing Simon said this morning (at 5:30 am) was "Go to school? Play Games? Play Wii?" Despite the ungodly hour, I was really pleased to see that he was looking forward to his day. I do worry that putting so much work on his little plate is slightly inhumane, especially when he falls asleep almost every day on the school bus coming home.

Yesterday, the therapist had incorporated use of a Wii into his routine, and Simon was thrilled. Unsurprising, since our little guy loves screen time. Whether it is TV, video games, the computer, or Mom's iPhone, Simon is all over it. His attention span goes from practically nil to pretty impressive as soon as there is a techno-glow to bask in.

In the past, I was often concerned that Simon's obsession, particularly with the television, was a sign of my bad parenting. I'm very careful about what the kids watch, but I felt that overall it was just too much. This was until one of Simon's therapists' observed that he was picking up on speech cues from TV that he was completely inattentive to in any other situation. (True.) And, he seemed to follow directions a lot better when they came from Dora... (yeah.) And, are those letters he is recognizing from Sesame Street? (Yup.)

I had always realized that there was something going on, but I was still pretty confused about what and why. Did Simon's ability to process information from the "tube" somehow reflect my inability to present it well enough in "real" life? Was I was a total failure as a parent, or was there something here that I was completely missing?

Olivia had (and still has) practically no interest in television. I'm embarrassed to admit that I had always taken credit for the fact that she preferred pretend play, books and coloring as somehow due to my particular parenting savvy. Nothing like having kid #2 to throw everything you think you know about being a parent out the window...

Now, I am starting to see that the answer to this mystery has little to do with my parenting acumen (or lack thereof). Rather, it is another "missing piece" starting to fall into place. I'm certain of this especially after my recent reading on the topic of sensory issues. My kids are just wired differently. Simon finds the lights, music and action on screen far more stimulating than any other activities. They literally turn him "on" in a way that a typical storybook or craft project can't.

At KKI technology, particularly iPads and the promise that they hold for greater accessibility to the disabled community, are all the buzz. Our Nueropsychologist lit up like a christmas tree when talking about the many ways that they are looking into developing new apps to help their patients. The field is wide open, and holds potential for everything from allowing people with communication disabilities to read and write, to helping multiply disabled children find the motivation and reminders needed to preform daily self-care tasks. He encouraged us to find ways to use our smart phones with Simon, either as a reward or as the tool to accomplish the task itself, and so far we are seeing some results.

(He also put in a persuasive plug for us to invest in an iPad, which I do see in our future. Really someone from Apple should put this guy on a commission, he's doing an excellent job promoting their product! Steve Jobs, if you ever read this, message me.)


As I am coming to understand this more fully, I am trying to think of more and more ways I can use it to Simon's advantage. Perhaps this love of technology and his (potentially) "normal" analytical skills can combine to help him find a way to make a living for himself in the future? Perhaps it will just help him use the potty... yes, you bet there is an app for that! Courtesy of "Huggies Pull-Ups." It is a free download, too.. (in case you need one). The only downside is that every hour or so your phone will tell you that it is "Time to use the potty!" -- potentially embarrassing if you forget to turn this off when you are, say, at a business meeting... 


Wednesday, January 19, 2011

Day 23: Inspiration



Today was another no-go for the meeting about the SPD testing. The OT is still out sick (if you are reading this, feel better!), so it looks like our discussion may be postponed until Friday.

Since I didn't have a meeting to attend, I was a bit unprepared to simply sit on my own. Usually I'd bring my laptop or at least a crochet project to busy myself while trying to hide from Simon. Instead, I neurotically checked my email every few minutes.. at which point, my mind wandered. I started to think about what I would write this evening, ("Day 23: Sorry folks, nothing new?," maybe give another cookie recipe?) and then I thought about the blog itself and what it has become. And then I started to write.

Since almost the first day I began this project, several people have been incredibly kind and sent messages of support and encouragement. They often site that they have found my writing about Simon, my family, and myself inspirational. I'm very touched, and I'm happy to think that in some small way I'm having a positive impact (if only for the space of a blog post). I'm also surprised, because while I find Simon's love and determination a constant motivator, I feel that what I do, and think, and write, are merely the natural reactions of a parent that loves her child unconditionally, as we all do.

So, let me share with you where I find my inspiration. Because, though I often wish I had no cause to be in the places and situations I find myself (like the PICU, and specialized therapy units, and special education classes), I also recognize that, from this particular vantage point, I have been blessed to witness an extraordinary amount of determination, compassion, courage, and love.

As I write this, I am watching a little girl work with her therapist to learn how to use a walker. She can't be more than five, and in some ways she reminds me of my Olivia. She is small and slight, with soft brown curls and a sweet face. On that face, she is wearing a look of such steadfast determination that it borders on ferocity. She's holding onto the sides of the wheeled walker, with her therapist moving backwards in front of her singing nursery rhymes and encouragement.

Each movement required for her to put one tiny foot in front of the other is slow and laborious and the product of great effort. Yet, when she makes it to the end of the hallway, and the therapist suggests that they take a short break to play, the little girl shakes her head vigorously. She wants to keep going -- she isn't ready to give up and get back in her wheelchair.

How much easier would it be for her to stay seated? To play with a toy, or watch a video? How much effort could she save herself? I can only imagine how frustrating and exhausting it must be to focus so intently to simply put one foot in front of the other with the only goal to make it down the hallway in a somewhat stark facility.

I wonder at her motivation. Does she even understand why she is here, why it is so important to move her muscles to build strength, and prevent atrophy? I wonder that she can grasp the importance of a concept that eludes many fully grown, able-bodied adults; that if you don't keep moving your body it will become your prison.

I wonder if she realizes that it is because of seeing children like her, that I keep exercising. Because of her, I am profoundly grateful for the simple miracle of being able to move my body at will.

I doubt the little girl thinks about any of this. She moves because her heart and will are as great as any athlete. She moves because her spirit propels her forward. Though she can't give voice to her reasons, it is enough for her to shake her head to tell us that she is not ready to give up.

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Another example:

A few years ago, after a particularly jarring appointment with the Orthopedic surgeon, Brian and I were in the elevator with Simon in his stroller, discussing what we'd been told. The surgeon had said that, in the future, Simon would need multiple surgeries to sever tight tendons, lengthen short bones, and, in addition, he'd need rounds of botox injections to tighten loose muscles. The goal would be to gain some mobility, but it mostly seemed that this Ortho was worried about appearances. He wanted to keep our son "looking" normal as he grew.

This was scary, and we were worried. I voiced the concern that it just seemed like too much to put a child through.

In the elevator with us was another mother with another child in a stroller. Like Simon, this child was wearing a t-shirt with a Sesame Street character (slightly damp from drool), and he was sucking on a pacifier. Unlike Simon, this child was ten years old.

His limbs were tiny, and his hands and feet curled in. His head lay to the side with a placid expression as he lay his cheek within his mother's caress.

"Excuse me," the other mother said, and our eyes met. "I couldn't help overhearing what you were talking about. I just wanted to tell you that we've done some of those things -- botox and surgery. Some things helped, but not all of it. I'm not saying you shouldn't try things, but -- don't listen to everything the doctors tell you. If it seems wrong to you, go with that. Remember that he is still a child, and you are his mother, and you need to do what you think is right. Always."

I thanked her, and asked after the health of her boy. She smiled and said that they were doing well. The little boy closed his eyes when she ran her fingers through his hair.

I don't think that I understood then what an impact her words had on me. How much she inspired me to remember that no matter WHAT the circumstances, or how "special" the need, my child is just that, a child. And that I, as his mother, am empowered to not only seek help, but to decide how much intervention is too much. To get second opinions (which we did), and to trust myself. She also inspired me in a more subtle way -- she showed me that no matter how much I feel that I am going through personally, I should make room to be compassionate to those around me that need my help. Even if I perceive their problems as less severe than my own, I should not judge, and I should be open to listening and to giving what I can whenever I can.

This lesson has kept me sane and balanced and grateful in so many circumstances.

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One last example, a recent one (I've got dozens!).

When Simon was in the PICU, on day three I was standing in the outside hall. Only two people were allowed in at a time, and I was giving someone else a turn to visit. As I leaned against the wall for support, another Dad came out to stand by me. His son was having a procedure done (you can tell because they close the curtains) and he'd been shoo'ed out, the way we had been when they'd given Simon a lumbar puncture the day before.

The dad looked at me and commented that I "looked rough." I tried to laugh and thanked him for the complement. I asked him how he was (a dumb question in the PICU, I know) and with a tight smile he said he was fine. He asked me where I was from, and I told him that I was lucky because I lived nearby. He nodded. He stared hard at the wall opposite us and said that his family was here from Colorado. His son has a rare bone disorder, and Hopkins was the only place that could help them. His boy was only 11, but so far he'd had 8 surgeries and more were needed.

Without looking at me, he told me that he owned a sports equipment store in Colorado, and though he loved it and it did well, he'd decided it was time to move. "It's too hard for my family, traveling for these surgeries. There will be more of them, and this is the best place, the only place to help my son. I can start over."

Here was a man in his fifties, who'd built a career and a life that he loved, in a place that he loved, and he was giving it all up. Starting over for the welfare of his little boy, and the love of his family.

Within this brief conversation I found the meaning of strength, and resolve. I was inspired by such courage and steadfastness and optimism. It helps me remember, when I feel sad about a sacrifice I've had to make - like canceling our trip to France this summer -  that I am by no means alone in letting go of my wants for the needs of my children. I know that to do what needs to be done out of love, will bring me more peace and happiness than anything else could.

Determination, compassion, courage, and love. I thought I knew what those meant before, but I never saw them so close, so magnified by circumstance. There really is such beauty all around us, and inspiration is within such easy reach if we are just open to it.

Tuesday, January 18, 2011

Day 22: Snow and Ice and Cookies

School was closed, but KKI was open so Simon did go to therapy this morning. His OT was out sick, however, so we have to postpone our meeting to discuss the sensory issues. Hopefully, we will meet tomorrow.

Instead, Simon got to focus on fun gross motor activities. He also got his cast checked out, which his PT has been keeping on top of vigilantly throughout the program. Nonetheless, after a few weeks, it has a big crack in the elbow and is starting to get slightly funky despite our best efforts to keep it clean, and dry and covered (my cast cozy is not only attractive, it is practical!). Simon's PT was kind enough to re-line and re-tape it for us, so we're optimistic that it will make it through the rest of the program (I would really hate to get the thing remade.. remember what fun that was?).

Otherwise, it was a snow day. Simultaneously quiet and crazy (because we all know what joy cooped up children can become). The kids yelled through a client call, Simon managed to have an "accident" in the 30 seconds it took me to change his pull-up, and I caught myself telling Olivia that if she "couldn't find something to do, I would find something for her that would probably be a lot less fun."

Oh, my. In lieu of an intervention, I did the only rational thing one can do under such circumstances. Baked a batch of cookies with the kids and then ate them all.

If you know me, you've probably got this recipe (I also have it on my office website). But, it is so good, and the kid's favorite, and what we made today (I always seem to have the ingredients on hand...), that it seemed like it might be worth the share.

Olivia calls them "Magic Mommy Cookies."

In a big bowl combine:
1 stick margarine, melted
1 banana, mashed
2 eggs
1 cup brown sugar
2 cups whole wheat flour
1 cup oatmeal
handful of shredded coconut
zest of an orange
bag of crasins
bag of white chocolate chips

Bake at 350 for about 12 minutes.

Monday, January 17, 2011

Day 21: Questions

I'm glad we meet with the OT tomorrow, because I feel like we have as many questions as answers right now. I finished the first book we were recommended, "The Out of Sync Child" (I do have mad speed-reading skills), and though I feel like I learned a lot; about the nervous system and sensory processing, and specifically the ways in which it can go haywire (so to speak), I found that Simon fit into parts of multiple profiles.

I think that this can be attributed to the fact that Simon's Sensory Integration Disorder is "mixed" with the effects of the Cerebral Palsy. For example, according to the book - he displays symptoms  of "Hyposensitivity" and "Sensory Seeking Behaviors" and "Dyspraxia." These are listed as three separate issues in the text, but my theory is that Simon's inability to feel sensation as acutely as most (whether touch, taste, auditory, visual, vestibular, etc.) comes from the brain damage of the stroke, or, maybe even scar tissue from the brain surgery he had to place the shunt when he was 2 weeks old. I think that this lack of sensation then causes him behaviorally to seek out opportunities to feel things in a more dramatic way than most children (hanging upside down, squeezing, eating spicy food, etc.). However, I think that the Dyspraxia (loose tone, poor posture, clumsiness) is actually "just" the CP.

I'm pretty sure it ALL comes from the initial brain damage (and by ALL at this point I mean Cerebral Palsy with Hemiplegia and Cognitive Delay, Epilepsy, Hydrocephalus, Strabissmus, and Sensory Processing Disorder). So.. what difference does it make what we call it?

Sigh. That is the tired and slightly overwhelmed Laura talking. The reasonable, capable side of me is optimistic that, if we can identify a problem correctly we can treat it effectively, rather than simply put band-aids on things.

I am trying to imagine what we will do differently... How can we keep Simon stimulated and focused in an appropriate way so he can learn better? How can we make him aware of his own bodily functions so he will be able to tell us when he needs to use the bathroom in time? How can we prevent the drooling, and the gagging, and the staring spells...? HOW? I just don't know.

I suppose that is why I'm not an OT. Yet. By the time this kid's in second grade (God willing) I have a feeling I will have practically earned a degree. Though, maybe I should focus on Neurology.. I do have a pretty good vocabulary there and significant research developing on prenatal stroke and epilepsy...

Well, here's hoping all our tomorrows bring us some answers.

Good night for now, from a very tired Laura.

Some thoughts in honor of MLK day

"We will have to repent in this generation not merely for the vitriolic words and actions of the bad people, but for the appalling silence of the good people."

~ Martin Luther King, Jr.

Lately, in the wake of the horrible shooting in Arizona, there has been a lot of talk about the tone of public discourse. There has been expressed a concern that the vitriolic words of the pundits and politicians within our public sphere can translate into the hateful actions of suggestible individuals.

While I think it would be comforting to find a specific person, or bit of political jargon, to blame for the sadness and horror we all experienced at such awful news, I don’t think that would be accurate. I think that the real problem is far more insidious, and pervasive, and lies within the “silence of the good people.”

From the reports, it seems apparent that the mental illness of the shooter was long noticed. He was removed from the college he was attending because he was so disturbed. Removed, but not helped, not treated with humanity but shunned. And so we all pay the price for our indifference.

Mental illness is just one area in which our society - the very society that Martin Luther King, Jr. expressed such a shining dream for - is still failing abominably in the arena of civil rights. The rights of Gay, Lesbian, Bisexual and Transgendered individuals is another. Yet another group consistently overlooked are the Intellectually Disabled, for whom almost no accommodations are made in any social context, even within the Americans With Disabilities Act.

Unfortunately, it takes time for even our great country to recognize one-by-one the rights of all its people, and acknowledge the dignity that each person owns as a birthright. However, I do think that today each and every good person can do something to help bring Dr. King’s dream a bit closer to reality.

We can be mindful of our own vitriolic words, because they can lead to action - or inaction. We can stop using words like “insane” “gay” and “retarded” out of context. We can remember to be respectful of one another because we never know what crosses we each may come to bear, or are suffering with in silence.

We never know when something said in hate (even unintentionally) may reverberate in the heart and mind of someone hearing it. We also don’t know when something said with love, kindness and respect may give someone the strength that they need to make a better decision, or just make it through the day.

“Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it.” 

~ Martin Luther King, Jr.

Sunday, January 16, 2011

Day 20: Surprises

Sometimes, on the weekend, when I am awakened by a certain little person before dawn, I will longingly remember what it was like to sleep in on a Sunday.

While flipping multi-grain pancakes, I will reminisce about the days when I could linger over my french-pressed coffee following a late brunch with friends in a chic urban cafe.

Life before kids had a predictable rhythm. There were things I could count on, like happy hour on Friday and sleeping in on Sunday. There are some things I think I will always miss about those comparatively saner, and far more self-focused days.

They are long gone now. My coffee no longer comes from a french press. I wake up early every day, and I am the one taking the breakfast orders. But every day I spend as a mommy, I am reminded that the world can be full of surprises.

Saturday, January 15, 2011

Day 19: Ups and Downs



This morning Simon and I went to the bookstore to pick up the texts that the OT recommended. Simon loves the bookstore -- he loves the train table in the kid's section, the new books to look at, and the fact that I will (almost) always buy him a "sprinkle cookie." Most of all, he loves that there is an escalator and an elevator within close proximity to one another in the center of the store. Every visit we go up the escalator and down the elevator. A few times. At least.

It wasn't crowded at all this morning, so we made a few extra up-and-down trips. Simon isn't exactly quiet about his elevator joy, so I wasn't surprised to see an older woman watching us. At first, I thought that she was watching because she thought Simon was cute (well, he is adorable), so I smiled at her. Instead of smiling back she quickly looked away. Twice.

Shy? Maybe.

At checkout, we ended up behind this same woman. She continued to take sidelong glances at Simon, who, at that point was singing to himself and spinning in circles. She also took a good look at the books I was carrying... and back at Simon... and back to the books... and...

Oh. Right.

I tried to see if I could catch her eyes, but she was quite determinedly not looking up. She'd noticed that something was "different" about Simon, and the titles of the books I was buying confirmed it. In addition to spinning, and singing, and repeated enthusiastic trips on the elevator, Simon's cast is apparent, you can tell his feet are different sizes from the brace he wears, and he was drooling quite a bit. Perhaps she was curious. Perhaps she was feeling sorry for him. Maybe she was saying a silent prayer for my sanity and his well being.

Maybe she was just being rude.

Some days, I feel like we put the "special" in special needs. I'm sure every parent with a differently-abled child has these moments -- and depending upon the visibility of the "difference" they happen more or less often. Myself, when they arise, I try to handle the instances with as much humor and grace as possible.

My favorite such instance happened a couple years ago in a busy restaurant at lunchtime. It was the last week of class for a local boy's school; and they'd clearly had a half-day because the little pizzeria I was in with Simon was full of teenage guys in ties and sport coats.

Simon had (and continues to have, though we've seen some recent improvement) a pretty strong gag reflex, typical of CP kids. Because of this, he often vomits while eating. It generally happens completely out of the blue, and usually at the worst possible moment. Over the years my reflexes have gotten better, and when he starts to retch I quickly lean in and try to catch as much as possible. Better on me than all over the restaurant table (trust me on that).

Yes, that's right, I catch the vomit. On purpose. I do use a napkin if I can grab it fast enough, and in later days experience has taught me to travel with a disposable "big gulp" cup to catch and contain such situations. However, in this particular case, when Simon's pizza started to come back up, I was bare-handed.

I was pretty pleased I managed to catch everything, but then I noticed that the entire restaurant had gone silent. I'd had no idea we were being watched, but the throng of noisy teenage boys had been horrified into complete and utter silence by our little spectacle.

Perhaps, if that had been the first time I'd been caught in a compromising situation because of my children, I'd have been embarrassed. As it was, I couldn't help but think it was funny. I turned to look those horrified, skinny, acne-laden boys full in the face, vomit held securely in my cupped hands, toddler crying because he was mad he'd lost his pizza, and I smiled. Broadly.

In as clear a voice as I could manage I announced to the room, "And THAT is why you don't have sex before marriage."

My pediatrician just loves that story. He's convinced I may have saved some kids from teenage pregnancy. I do hope he is right. I sure got a good laugh out of it.

Lately, it seems that the bigger Simon gets, the more often I run into this situation (not the vomiting -- the awkward reactions part). The older he is, the more people seem to notice that he is different from others. I've also become more sensitive to it. Even when I am out by myself and observe people with differences in day-to-day life, I'm sensitive to the way that they are treated, to the way many people react when in close proximity to someone mentally or physically challenged.

I find that people avoid looking them in the eyes, or looking at them directly at all. People with challenges are given a wider berth, or are generally avoided. Sometimes it occurs to me that by trying to be "polite" and not stare, not look, not address the differences directly, society is trying to render such individuals invisible.

I wonder how this will effect Simon as he grows, if he will one day become aware of the different way he is treated by strangers. If he will feel angry, or sad, or embarrassed.

I hope not. I hope that he will treat any such situation with humor, with grace, and with the same open heart he brings to the world now. I will try to lead by example, to be open about what makes us unique, to laugh at ourselves and the ridiculousness of it all. And, I have a feeling that he will be okay. Because, if there is one thing I do know, it is that my little guy indeed defines the "special" in special needs.

Friday, January 14, 2011

Day 18: The Hunt for Textured Underpants Begins



It's a good thing that this is a long weekend, because we sure have a lot of homework.

We met with the therapist today after Simon's session, and she reviewed the skills she wants Simon to continue practicing (more pincer grasps, supination and weight bearing exercises) over the weekend. In addition, she has added a new "section" for us to begin work with -- sensory play.

After our discussion Monday about a potential sensory disorder, Brian and I were both given a multiple-page Q & A to complete. (Additionally, we had a few more of these types of forms to fill out for a neuropsych evaluation we are in the midst of, also at KKI. I think this must be the SAT's of parenting. I really do hate multiple choice questions...) We handed in our "test" Wednesday, and our OT is currently scoring them and combining that information with what she has gathered from her independent observation of Simon. We will get the full review this Tuesday, but so far it seems that Simon is "text book" hypo-sensitive across the board, meaning that he is effected in most sensory areas.

The OT will be recommending a "sensory diet," more therapy options, and hopefully some strategies for how best to deal with some of the more challenging aspects of everyday life and learning for Simon. In the meantime, she's recommended a couple of new "text books" ("The Out of Sync Child" and "The Out of Sync Child Has Fun" for starters). We've also been given a handy chart with some ideas to start implementing now.

All of the ideas revolve around the concept of adding more sensation to Simon's day-to-day, minute-to-minute experience. Many we already implement, because we've discovered on our own that Simon is a much happier little guy with noise in the background and strong flavors on his plate. Other ideas are going to take more creativity to implement.

Anyone have suggestions on where I can find "highly textured underwear?"

Thursday, January 13, 2011

Day 17: Supination, Pincer Grasps and Pack Rats



Bringing your finger to meet your thumb is referred to as a "pincer grasp." The act of turning your wrist is called "supination." Both of these are necessary movements for so many little daily tasks -- from dressing and feeding yourself, to opening a door or turning the pages of a book.

Today was the first time Simon was able accomplish these subtle movements. With the barest assistance - just a tiny touch to the elbow, he came that much closer to self-reliance.

A pack rat is what I feel I've become, after sorting through a decade worth of paper.

Clearing up yesterday's avalanche of paperwork inspired a full-on studio clean out. In my desk, I found a copy of an email I saved from a dear college friend. She sent it to me the night before Simon was born, after I emailed to let her know that something was wrong with the baby and that he was being induced the next day.

This is what she wrote:

"Tomorrow the luckiest baby in the world will be born. He will be blessed with coming into a fabulous family who will love and support him throughout his life. He will have the most amazing parents who will be there with him through all of his milestones and achievements. He will have a wonderful sister who will teach him everything she knows. He will be surrounded by family and friends who love him every moment of his life."

At the time, with so much scary and unknown ahead of me, I thought the words were kind and her optimism brought me comfort.

Today, with so much behind me, they bear the ring of truth. Four years later, I know we are the luckiest family in the world, to be by Simon's side, witnessing the miracle of his milestones, surrounded by family and friends who love us all at every moment.

A slight turn of the hand, an old wish comes true, and little miracles happen every day.

Wednesday, January 12, 2011

Day 16: Daydreaming


This is one of my favorite photos of Simon. Perhaps, one of my favorite photos ever. A little boy in a field of clover, looking up at the clouds and dreaming. From the orange Crocs, to the T-shirt with Einstein sticking out his tongue, this image sums up our Simon, and Summer.

I think we are all longing for a bit of summer today. Because today, it is dark and cold with just enough snow to be annoying, and just enough work to be busy without attaining satisfaction.

We all endured our own little tempests today. Despite her inside-out PJ's, Olivia didn't get her snow day, and her disappointment was far stormier than the sky. Brian is thick in a fog, the culmination of a few sleepless nights' work on a presentation. Myself, I spent the day foraging through a paperwork blizzard, hunting for an 8-year-old business receipt (for reasons too irritating to reiterate here). I'm writing this post from a safe spot I've carved amidst the avalanche that landed on my desk.

We're mid-way through the casting, and mid-way through the winter. We're tired. We're cranky. Our mood is as dark as the January sky.

Except for Simon. At the moment, he is singing and laughing and looking for someone to play hide and seek with. He's making snow angels in my banks of paper debris.

Because today, Simon proved that he is smarter than we are. When he was tired, he slept. After a morning full of hard work, concentration, and things he didn't necessarily want to do; he fell asleep on the bus to school. And he stayed that way. Through work time, circle time, and all the other busy preschool program, he slept. He spent the afternoon dreaming because he needed to, and I'm pretty sure he doesn't feel that he missed a thing.

Perhaps, in the dead of winter, a little dreaming during the day is the best way to find that elusive bit of sun.

Tuesday, January 11, 2011

Day 15: Next to Godliness

Last night, after my post, I headed out to a yoga class. I'd missed the morning session and thought it would be good for me to go and get out of my own head for awhile.

I was wrong. I spent the entire class thinking about Simon's potential sensory disorder. Or, more specifically, I spent the entire class beating myself up for not having identified it sooner.

I fell out of every twist and balance I tried. My muscles shook and I sweat profusely (it is heated yoga). At more than one point I thought about giving up. But I didn't. Because I don't, because I can't. Giving up isn't an option, no matter how badly I'm faltering.

When we'd finally gotten past all the tough stuff, and I was lying on my mat in "corpse pose" at the end of class, I felt close to tears. I was far more tired than usual, and I knew that this, too, was my own fault for my inability to "let go" and focus.

And then I caught myself: Idiot, you're feeling guilty for feeling guilty.

Now that's progress, I thought wryly. At least I'm calling myself out on it, and acknowledging the senselessness of it.

Guilt. I'm very good at it. Whether it is my old-school Catholic upbringing, or the fact that I was an oldest child and always felt responsible, or just part of my DNA, I excel at feeling guilty. Where Simon is concerned I've honed the feeling into a practical skill set.

I've wondered if something I did, or did not do, in my pregnancy caused his stroke. I've questioned whether or not I've done enough for him soon enough to have the greatest impact. I berate myself for not pushing harder when I first suspected he had Cerebral Palsy and the pediatrician and therapists weren't willing to "label" him yet (as if a diagnosis is the worst thing a mother can want for her baby.) And now, I'm making myself crazy wondering if recognizing a sensory disorder sooner would have allowed for more effective treatment and possibly prevented some of his missed milestones.

Feeling guilty does not fix these problems. It just prevents me from focusing. I lose my sense of balance and it makes me want to give up. And, giving up isn't an option, no matter how badly I'm faltering.

But, maybe it is time to give up the guilt. To use further Catholic rhetoric; I'm not a saint, I'm not infallible. But I won't be a martyr to the "what ifs" and the "should have dones."

I'm Simon's mother. No one knows him better, and no one could love him more. And that is close enough to godliness for any mere mortal.

Monday, January 10, 2011

Day 14: Well, That Makes Sense


I hate it when I miss the obvious.

Today, we met with Simon's OT at KKI to review progress and set goals. Overall, the goals involve getting Simon to use his left hand and arm as much as possible while working on some basic skills he needs to simply get by; like feeding himself, assisting in toileting and dressing, interacting with peers, and making "pre-writing" strokes. Though seemingly modest, the goals themselves aren't a surprise to us, we've been working on them since he started missing all the milestones in the first place.

What surprised me today was an observation his OT shared with us, that might end up having a lot of impact on how we interact with Simon.

She and Simon have been "playing" with a sort of giant stretchy fabric tube in the shape of a fish. Simon throws a bean bag into the fish's "mouth" (to feed it) and then he tunnels in after it, getting sort of tangled up in the stretchy fabric along the way. He has to use all his limbs together, and lots of weight bearing and stretching and pulling to get back out the other side.

Simon LOVES this activity. In fact, he likes to just lie inside the stretchy fabric tube letting it squeeze him. He'll even tell the therapist "good night" and hang out until she "fishes" in for him.

According to the OT, during this activity, Simon behaves differently than he does the rest of the time she is working with him. Simon is an easy going, happy kid that mostly cooperates (with a fair amount of assistance). But, the majority of the time he's also in his own world, talking and singing to himself, or just staring off (I like to think he's deep in thought about very serious matters at these times).

However, during a highly sensory activity, where he is getting a lot of physical sensation, he's more alert. He makes more eye contact with the therapist, and he responds to her more readily. He pays better attention and is overall more engaged. To demonstrate this, she had Brian bounce him around a little bit. Sure enough, he immediately came out of himself and looked her directly in the eyes when she spoke to him -- his whole face alive and attentive.

Holy crap.

The OT thinks there might be more to this phenomenon than a simple enjoyment of physical play, she thinks he may have a hypo-sensory disorder. After talking to her further about the symptoms, and initiating a little internet research myself (oh boy, a new topic!), I'm pretty sure she's spot on. The OT is going to have us fill out some Q&A's to confirm this, but due to the wonders of the internet, I've preempted her (a little).

It would take me way too long to list all of the questions I've answered YES to, but suffice it to say that I'm certain we are on the right track. Here is a sampling:

> craves vibrating or strong sensory input
> always jumping on furniture, spinning in a swivel chair, or getting into upside down positions
> is a "thrill-seeker"; dangerous at times
> seeks out surfaces and textures that provide strong tactile feedback
> may not be aware that hands or face are dirty or feel his/her nose running
> prefers foods with intense flavor; i.e., excessively spicy, sweet, sour, or salty
> excessive drooling past the teething stag
> loves/seeks out "squishing" activities
> enjoys bear hugs (I personally enjoy this one, myself)

HOLY CRAP!!!

While I am really, really, really upset with myself for not connecting these dots sooner on my own (and I think it is worth noting here that as a special-needs parent I've pretty much been trained to be on alert for signs of HYPER sensitivity since it often indicates disorders like Autism.. not the other way around), I'm also a little excited that we may have another answer to some of our questions about Simon. I know from experience, that while it can be scary (sometimes very scary), having a diagnosis means the beginning of getting the right help for our little guy.

For now, it looks like another long night of research for me. I'd better go put on that second pot of coffee.


Sunday, January 9, 2011

Day 13: Little Boy

In honor of the Ravens' Win.. Simon learns to fumble.

Day 13: Big Girl


Today was another "Divide and Conquer" kind of day. Simon hung out with Brian: they went to the hardware store and watched football (Go Ravens!). Brian dressed Simon in a jersey, covered his cast with a purple sleeve, and worked on teaching him to yell "TOUCHDOWN" at the right moment. For a little game time "therapy homework" they practiced picking up and throwing a small purple football. Consequently, Simon has also learned the term "fumble."

Meanwhile, Olivia and I had an important date. Every month or so, Livy and I set aside a day to do something fun together, just the two of us. Olivia calls it "Mommy Day." (It melts my heart every time she says this). Today, she wanted to have brunch (her favorite meal) at her favorite restaurant, a funky diner in the city. Then, she chose to hit the BMA, which she loves for its contemporary collection. Today was the last day of a show of late Warhol works and she wanted to make sure she saw it.

The kid is in the second grade. Honestly.

With the holidays, and with all that has been going on with Simon, it has been a little while since I had a good heart-to-heart with Olivia, so we had a lot to discuss (aside from some remarkably astute observations on the Warhol exhibit).

First, she wanted to know if the bones recently found on a Pacific island belong to Amelia Earhart, and how you can tell if those are the right bones. I tried to explain DNA . Then, Olivia wanted to know specifically how I dealt with client situations where I was wrong, and was I ever embarrassed (she's had a little performance anxiety at school lately). We discussed the current book she's writing "When the Butterflies Leave the Earth," and how to get it published. We also reviewed the pros and cons of owning a parrot, and whether or not they can be trained to take orders in the cafe she wants to own in Hawaii when she grows up. She's pretty confident that they can at least be trained to bus the tables. She's probably right.

Then, Olivia wanted to know when Simon is going to get his cast off. I explained (again) the premise of what we are doing and why, and she does understand it. However, she still doesn't like it and she doesn't think that it is fair that we are making things so challenging for him.

"He's just a KID, Mommy." Wow.

Well, I should have seen that coming. Olivia has quite a history of defending Simon. When she was only four, Simon had surgery that left his eyes blood-red for weeks. When another child yelled that Simon was a monster (he was pretty scary looking), she marched right up to the much bigger boy and corrected him: "My baby brother is NOT a monster! He's a TREE FROG!"

About a year ago, Olivia asked us when Simon was going to grow up. She wanted to be able to play with him, she said. Her friend's little brother, who was Simon's age, was a playmate, and she didn't understand why Simon was different. She also told us she was sometimes embarrassed because Simon drools and still wears diapers. Apparently, her friends had started asking her questions she couldn't answer, because she'd never thought about it before. To her, he was just Simon.

We did our best to explain things in a general non-scary way. We emphasized that Simon is learning and growing, but that he needs more time and more help. We talked about how we, as a family, could help him and care for him, and how very important her role in that is.

Since then, Olivia has taken her role as protector and teacher very seriously. She explained to her questioning friends that Simon is different, but better, because he never fights with her, just loves her. (Her friend replied that she wished her brother was brain damaged, because he'd be cuter! kids...)

Simon does adore her, and she loves him back fiercely. If he needs something, she's often the first to help get it for him. When he cries, she soothes him (even if he is in time out). She plays his favorite games for him to watch, builds towers for him to knock over, and tolerates him drooling on her shoulder when they cuddle on the sofa to watch TV. Recently, when she had friends over and Simon stood in front of the Wii (again), and the kids yelled at him, she yelled right back that they need to be nice to her little brother.

Simon is lucky to have such an amazing big sister. She's got his back, even when it means calling out their parents. I couldn't be prouder.

Saturday, January 8, 2011

Day 12: Memento Mori

We are officially post holidays, and the normal extra-curricular schedule of activities has resumed. Which is good, because today it meant I got to have coffee and a chat with a dear friend while our girls were in dance class together. M and I have known each other since we were stylish young career gals -- before husbands, houses and children. Ten years later, we're still stylish, just a bit more seasoned.

As long as I have known her, one the many wonderful things about M, is that she is an amazing listener. We haven't seen each other in a few weeks and (though I am sure she has tons going on in her own busy, full life) she let me yammer on about Simon's progress. Of course, this blog came up as a part of our conversation, and I got to talking about why I started writing it in the first place.

Aside from the reasons I've already mentioned: to provide some information for other families like ours, and to use it to reflect on our experience as a family -- I've had another reason in the back of my mind. Since the rather dramatic events of early November (pre-blog), when we came so close to losing Simon, something in who we each are as individuals, and how we work together as a family, has changed. A shift, of sorts, and I feel like I have been looking to define it. To understand it.

I was trying to explain this to M, and she tried to get me to explain what the heck I meant (with good reason, what the heck do I mean?). I stated that I thought coming so close to losing my child left me altered (maybe shaken is a better term), and I don't think I've gotten over it. I said I imagined any such event (illness, financial loss, accident, death) would have a long-term, lingering impact on a family. I said a few other things that were probably equally vague, and then (finally), it sort of clicked for me. What changed is as simple as our perspective.

For years, we been pushing and pulling, predicting and prognosticating over what the future will be for Simon, what we should do, what may happen... and the fact that there was so much unknown and unknowable was infuriating at worst and frustrating at best.

If I don't know what is going to happen, how can I plan for it?

Truthfully, I know that no one can predict the path of a child, much less the path of one with brain damage. With any child, wanting to know what high school or even college to prepare for is a shot in the dark -- an optimistic and hopefully well-aimed one, but still unknown. With a child like Simon, there is no way to know what progress will be made in a month, much less a year. Will he be ready for inclusion kindergarten or still need special ed? In a few years, can he go to a regular school with his sister? Maybe not, maybe so.. wait and see.

I hate wait and see. I am not a wait and see person. I have sub categories on my to-do lists, and sometimes put things on them that I have already done, just so that I can check them off! I like to know what is next.

Until November. I can tell you the exact moment it changed. November 3rd at about 2 am was the first time I picked up a pen to write down my thoughts in many, many years. It was our second night in the Pediatric Intensive Care Unit with Simon. He had been unconscious for over 24 hours and we did not know if he would wake, or, if he did wake, if he would still be.. well, himself. Brian had gone home that evening to be with Olivia (who was also upset), and I decided to stay by Simon's side in spite of the fact that there was no sleeping allowed in the PICU and I hadn't shut my eyes in two days.

I had a notebook in my bag that I used to write down meeting notes on the fly. I'd been sitting staring into space for hours at that point, so I pulled it out and thought that maybe writing down what was in my head would make it more bearable (and keep me awake). Give me a purpose if only for a moment. This is what I wrote:

Here, alone, in the PICU, the best thing I can do is not think. Keep my mind empty, blank. Be ready to absorb any new information as it comes, but not ponder the larger sum of the experience. Just take away the lowest common denominator, and in the interim, remain neutral. 


I can't think or even describe what led us here without feeling my face flush, my bones chill and shake, and my eyes fill fast with overflowing tears. Nor can I speculate about what is next. What will the future hold, how will it be altered for my little family, without losing touch with solid ground. Even turf becomes lost in the dark. Like quicksand, the more I try to think it through, figure it out, the more it pulls me down.


I can't process my surroundings, or absorb the suffering of the parents and children around me. Frozen with fear, or resplendent in robes of denial, we all sit here together in a sort of stasis. We are all blank, really, because there is no way to grasp the whole of it. We are not looking forward, we are simply being now.

Being NOW. I really did learn that. Finally. I learned not to keep looking ahead, but take what I have when I have it and try to simply be there. For years, Brian and I looked at the future for our son with a mixture of fear, denial, and what we liked to think was optimism. Now, we don't talk about it so much. We do what needs doing (of course), we forge ahead, and put what plans in place we can. But now, when the concept of Simon as an adult comes up, we don't start to bicker over whether or not he'll be able to be independent, we don't tense up with fear and worry. We shrug. We actually smile. Brian teases me about buying a hideously huge RV and roaming the country with Simon as a navigator, and I feign horror at the thought of becoming a "snow bird."

And then, we say to each other that what will be, will be. For now, what do we want to do today?