Stick a Fork In It

One of the most perplexing things (okay, one of many "most" perplexing things), about raising a not-very-verbal kid with physical challenges is being able to tell the difference between when he CAN'T do something and when he WON'T do something.

Take, as a prime example, our relationship with cutlery. As a parent, I know it is my duty to instill at least a baseline of table manners into my children, so that one day they may be welcome to the table of people with potential import in their lives. Not to mention the fact that it would be nice to have a meal with the kids that doesn't require a bath afterward.

However, after many failed attempts at introducing forks and spoons, Brian and I had sort of given up on it. Besides, there are few things that can't be converted into acceptable finger foods, and Simon is so small that he generally doesn't raise any eyebrows when we dine out and he eats with his hand.

Sadly, we are aware that the clock on this grace period is ticking, and so, this past Saturday, Brian put on a brave face and decided that it was time to re-introduce the FORK. I have to admit, I wasn't completely on board. It was Saturday morning and I had yet to finish my coffee, "Is this really necessary?" I whined. I reminded Brian that, once you start this sort of crusade, you really can't abandon it. It becomes a matter of sheer will, a battle that as a parent, you MUST win (no matter how many years later), because to lose this would mean a lifetime of meals resembling that scene from "The Miracle Worker"...

We know that from a fine motor standpoint use of any tools like this is challenging for Simon. He has trouble manipulating crayons, using scissors, threading beads, connecting legos, etc. We've worked on these skills in OT, and continue to do so, but we haven't really pushed the utensils. It just seemed like making his ability to feed himself more difficult was kinda mean. The kid already has a lot to cope with, why add to it?

But, I had to agree with Brian, the time had come. We owed it to Simon to try to civilize him.

Steadfastly, Brian poured me some more coffee and presented Simon with his favorite breakfast in the whole wide world.. the BIG breakfast from McDonalds, which, believe it or not, my 34lb son can totally pack away, shoveling it in one-handed with gusto.

Exicted, Simon ran to the table, only to fall off his chair in a total and complete tantrum when we presented THE FORK and insisted he use it. We'd pre-loaded it with his favorite part (sausage), but even that wasn't enough and he actually tried to remove the sausage from the fork rather than raise the offending implement to his mouth.

About a dozen tantrums later, we reached a compromise of sorts. I'd placed three forks on his placemat -- each one loaded with a different food. Eggs, pancakes, sausage. "Simon," I chirped in my "Mommy is happy and calm no matter how much you freak out" voice, "look, you can CHOOSE which fork you want. What do you want to eat? Simon can CHOOSE HIMSELF."

Simon was tired, and hungry. This tiny semblance of control was just the olive branch he was looking for to be able to pick up the fork with dignity. He chose sausage. I reloaded. He chose eggs. I reloaded. Pancakes... you get the picture. We did this for a while, and as he settled into the rhythm of it he did something that shocked us.

He took his empty fork and speared his own sausage, thank you very much.

We're still working on it, and it is pretty frustrating for Simon. (FYI, cheese curls are exceptionally motivating and easy to spear). But it is one more step towards ability, and I find that exceptionally motivating for me.

Father's Day

I can tell you the exact moment I fell in love with my husband. We'd been dating for a little while, we'd been friends for over a year, and I knew that I was starting to feel something more than simple attraction -- but, we'd really only known each other in one context. I knew, even then, that it isn't possible to clearly see the complete picture of a person within the twenty-something/work/happy hour/hang out environment. Besides, back then, the bars were still pretty smoky and nobody could really see anything.

That winter, we took a trip to visit his family who lived a few hours away. Having left after work, we arrived very late at night. His parents had stayed up to greet us (and meet me), but his sisters had gone to bed already. Like me, Brian is the eldest child in his family. He has a younger brother (who was in Germany at that time) and two younger sisters. I have a younger sister and brother. Like me, there is about a decade's difference between him and his youngest siblings; and we'd both spent a lot of time babysitting in our adolescent years, taking care of our little brothers and sisters while our parents worked.

After making introductions and briefly chatting with his folks, we went upstairs to go to bed ourselves. But, before we could even put down our bags Brian crept silently into his sister's bedrooms. Without turning on the light, without waking them up, he leaned over and kissed them each softly on the forehead. He watched them sleep for a brief second, and then exited the room with a look I'd never seen on his face before. His features had softened, and his shy smile completed the portrait of the man I'd been seeing, but was just now seeing for the first time.

I knew that, had his sisters been awake, they would have rebuffed this tenderness, as would my brother at the time. No teenager wants to be kissed on the forehead by a big sister or brother. But, I also knew that it was just the sort of thing I would have done. Brian was already a caretaker, just like me. He understood the selfless kind of love, the kind of love that carries you through anything and over any obstacles.

And suddenly, I knew. I knew that I'd found a man that I could marry. I knew that we would understand each other because we understood the meaning and value of family, of selfless love, of truly taking care of one another. I knew I was in love.

And, a few months later when he asked me to marry him, I knew that I was right.

I still am.

Post Preschool

I suddenly understand why little old ladies are compelled to own tiny little dogs, and to dote over them into their own dotage. A fluffy little dog will not grow up, will not cavalierly slide past the point at which you would like to freeze their "littleness" in time. No, instead, they will stay forever fluffy, soft and tiny. Just the right size to sit in your lap and cuddle.

I can see myself becoming one of these little old ladies one day.

Fortunately, for now, Simon is still small and sweet enough to cuddle in my lap quite frequently, but his "graduation" from preschool today highlights the fact that he is growing up. Although Simon seems like a three year old, he is not. Though I want to hold him back indefinitely, in the hopes that he will "catch up," I can't. This chapter of his childhood, and in my life as his mother, is closing, and in so many ways I don't feel that we are ready. Not ready to leave the safe harbor of pre-k-ness. Not ready to leave the teachers that have been so wonderful, and that I know love my child. Not ready to accept that, though we have made advances and done well within this special needs setting, we need to continue on within it and move forward into kindergarten.

Tonight I am both sad and grateful. Okay, mostly sad, but trying to remind myself that I should be grateful for the good experiences we had. A little (lot) tearfully I raise a glass to the teachers that have taught so well, and loved with warm and open hearts so many challenging children with challenges -- and their kind of needy parents.

 

I-E-P 1-2-3

Today we had Simon's final IEP meeting of the year. I'd tried to coordinate it earlier than the day before his last day of school, but it seemed that this once the administrative gods were not in my favor. After several phone calls and a lot of schedule-wrangling; Simon's team finally came to the table today to discuss our plan for moving from preschool to kindergarten (gasp!).

Though this was by no means our first IEP meeting, it felt somehow more important and therefore more stressful. So many changes both in Simon and in the curriculum warranted an extra level of preparation and precision. We're moving from a teacher we love, and who knows Simon very well (over 2 years), to someone new and unknown. We're going from a half day to a full day, and from the relatively flexible structure of pre-K to the far more academic Kindergarten model. We're also shifting from Simon being in a special education classroom 100% of the time, to spending some time (with the assistance of an aide) in a general education classroom in order to interact more with typically developing peers. Simon will also be eating lunch at school; and with his food allergies and tendency to choke, even this is a source of concern.

In short, this meeting was a biggie. We've been through a battery of assessments over the past few months and we discovered new diagnoses to discuss, and had many new needs and concerns to address. The IEP meeting provides the forum to discuss them and craft a plan to be carried out formally, in writing; a contract between all the members of Simon's educational team.

In our new plan, much of what I felt was needed was implemented. We've added an aide, specified individual therapy time, and created a strategy to address his food allergies and gagging. Some of what I wanted to address wasn't included in this version of the IEP -- like formally changing his diagnosis to include Autism and sensory concerns, or adding music therapy and the use of technological assists (like the ipad) into his lessons. However, everything I brought up is now on the table for further evaluation in the new school year, and the appropriate steps are already being taken to pursue these additions. Very soon there will be more meetings, evaluations and tests, and finally another new IEP to write. The entire team has agreed to come back, re-evaluate, and more specifically address all Simon's needs in the Fall after more screening has been carried out.

So, despite a fairly heavy amount of worry and trepidation, I do feel (somewhat to my own surprise) that it went well. And, since I know that this is just one of many future "biggie" meetings we'll be attending for Simon's Individualized Educational Plan (darn kids just keep getting more complicated!); and because I know that many other parents are in similar positions, I'm going to catalog a little of what I've learned that I think has contributed to our success (thus far!). Honestly, it isn't anything earth-shattering in revelation, but it may be helpful to simply spell it all out, step by step. So, here goes:

1. Be the comprehensive specialist on YOUR child. 

When it comes to all things Simon, I make sure I am well versed in all his challenges -- physical, medical, cognitive, sensory, etc. Every chance I get I make sure to ask every professional working with Simon -- academically, medically, and therapeutically -- for their opinion on his treatment and education moving forward. Sometimes they include their recommendations in their notes, but I always make sure to record it in mine.
 
Employing a giant binder, I've created the Encyclopedia of Simon, with the contact information of all our specialists, copies of all his most recent assessments, diagnosis, doctor's recommendations and therapy logs, reference information from lectures and websites, copies of his previous IEPs, and my own notes on anything I think is important. (Insurance information, and other kinds of documentation is in a separate binder, FYI.. otherwise, I'd need a forklift to carry it).


I bring this encyclopedia with me to the IEP meeting (and almost anything else related).

2. Be prepared. Tap into whatever resources you can to learn about the IEP process itself (you can often find them offered through school districts and therapy centers). I've read books, scanned websites and been to lectures (mine were offered free though KKI) about IEP preparation and about what one can and can't expect from an IEP and the school system. Just understanding what this contract can and can't do makes a huge difference.

Then, shortly before every meeting I review the previous/current IEP. I also review charts of developmental and educational milestones and, culling from what I know Simon has not yet achieved, I compile a list of what I think we need to work on further, or add. I make a point to use appropriate jargon when crafting my list (borrowing terminology from my research and from the evaluations I've amassed). I make a copy of my list for each person I know will be attending the team meeting.

This list has been one of the biggest keys to a successful meeting. It immediately gets everyone on the same page (literally), articulates my concerns and desires in a concise and thorough way, and, even if I don't get everything I want, everything that I want is addressed. I also add questions to this list to make sure I don't forget anything, or leave without a plan to get them answered.

3. Be respectful and appreciative. Even in difficult circumstances (and talking about what your child can't do and trying to figure out how to get him or her the best and most appropriate help and care when you aren't there is a pretty damn difficult pill to swallow) it does not help to lose your cool, or the perspective that the people sitting in the meeting with you are there specifically because they want to help. They, too, want what is best for your child and, if you operate on the good faith that they will do whatever they can to ensure that this is attained, you will find partners instead of adversaries. And, let's face it, we all need more help - it takes an entire village to help a child with special needs and you aren't going to get anywhere if you storm the place with torches and pitchforks.

Having said that, remember that the IEP is just the framework for the process. Be vigilant in making sure that goals are carried out and treatment is effective. It is your job to continue to advocate for your child, but (whenever possible) doing so in a way that is positive and constructive will yield the best results for everyone, including your child and your stress level. Also, be sensitive to the fact that the school has a lot of kids to work with, and sadly, a lot of those children are going to be in more challenging circumstances than yours, some of them without as much support from their own parents.

Finally, I make the effort needed to show that I appreciate the time and the expertise of the professionals I am working with. Preventing burn out of the people you depend on for the care of your child starts with how you treat them. A box of joe and some munchkins goes a long way, as does a simple "thank you."

Then.. you just wash, rinse.. and repeat.

Sharing

http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html

About a week ago I read this article from the NY Times, linked to from a friends' Facebook Page. It starts with the story of a 13 year old boy with developmental disabilities who had been killed by a state employee whose care he was in. The employee had a history -- not only of abusing patients in his care, but a criminal background before that. The article went on to expose the systemically corrupt and abusive system in place in the NY State Department of Health's care providers for the developmentally disabled. Additionally, it described similar abuses in a variety of private homes and organizations.

Unthinkable, terrible, heart-breaking incidences were described in detail, repeatedly. The article shed a glaring light on the fact that some of the most vulnerable people in our society are being abused on an ongoing basis HERE and NOW. Horrified and outraged, I posted the article on my own Facebook page and specifically asked people to share it. I (somewhat naively) hoped it would "go viral" and make people so angry that something would be forced to change.

But, it seems I was wrong. A week has passed and I've heard no more about it. Do you know what kept the news occupied this week instead? Basketball. A congressman's indiscretion in "tweeting" some moderately salacious photos. A guy that dressed up in silly costumes to wave to his son from the school bus. To be fair, a few folks did share it, and "Spread the Word to End the Word" linked to it and got about 175 comments on it, but I can't help to think that if the article had been about the abuse of puppies it would have been on the evening news, the Today Show and CNN.

I guess that for many people, it was just too raw. Too real. A friend reminded me that dwelling on the concerns of the elderly, or the infirm reminds us of our own human frailty and it is simple human instinct to turn away from it. Though, my darker side wonders if it was human instinct that led to the abuse in the first place. Darwinism run to a rampant extreme.. and if it is some vestige of this instinct that causes not just the employees witnessing these atrocities to turn away, but the educated and powerful in our society to ignore it.

I wonder if I, myself, would have shared the article if it were not so close to the bone. If it didn't tap into my deepest fears as the mother of a developmentally disabled child -- a child so vulnerable, so unable to defend himself or even tell someone if he has been wronged or hurt. A child so sweet and dear to me that I feel I would die myself if someone were to harm him. I hope that I would have.

But for now, I am just hoping to stay hopeful. Hoping that one day, people that gleefully "retweet" semi-sex scandals will find their way to caring about what happens to a little boy that couldn't cry for help himself. That a basketball score will be less important than our score on human rights. That I can place my son in the temporary care of a state system -- like school -- and not fear that he could someday be hurt or abused or even killed because he is vulnerable, and he is different. How I wish that the world was a different place sometimes.

Imagine

I was tired and worn when I got home today -- a long photo shoot in 96 degree Baltimore weather had taken the wind out of my sails, so to speak (actually, there was no wind to begin with). At one point, I literally had sweat running down my back; which totally ruined the facade of calm, cool, and collected art director I generally try to go for.

However, when I came home and recapped the events of the children's day with our sitter; I was thrilled to discover another little miracle, which immediately restored my buoyancy. She told me that she'd scratched her leg, and when Simon saw the little cut he told her "Don't worry, I'll take care of you. Simon is a doctor." and he went to get his toy stethoscope to make her feel better (since that is what doctor's do).

Just like the first time Simon asked me a question, a little over a month ago (which, consequently, has become a regular occurrence -- he now asks where people are going all the time!), this seems like such a little thing from the outside, hardly worth a news bulletin (or a blog post). In fact, our sitter told me about it only because she thought it was particularly cute. And, it is cute -- but it is also indicative of a higher level of thinking.

Imagination and empathy are key to the human experience, and we are starting to see glimmers of them in Simon. I've always had glimmers of hope and optimism for Simon's ability to reach a higher level of communication -- but only glimmers, because I never wanted to get ahead of myself. I wanted to stay grounded and in the present so I could appreciate where we were. I don't want to harbor expectations that can lead to disappointments, or for that matter, to limits. But now, I find that with every instance like this, my hopes turn from vaporous glimmers -- there but not actualized -- into more solid forms. I'm both excited and nervous... but in my heart I believe that good things are headed our way, on the summer wind.

Dream a Little Dream

A cloudless blue sky filled with optimism and possibility presided over the Opening Day celebration for the League of Dreams; a baseball team for differently-abled kids ages 5-18. Uniforms were issued, the anthem was played, and the coach addressed his players with great enthusiasm. As each batter stepped up to the plate, their name was announced over the loudspeaker and the crowd went wild.

Though there had been a similarly cloudless sky last week, when we'd attended our first practice, I'd been too busy spinning in a tempest of conflicting emotions (a typical state for me where Simon is concerned) to fully appreciate it. I'd been grateful that the team existed, and that Simon would be able to participate in such a "typical" five-year-old pastime -- T-ball! However, piggybacking my gratitude, I felt the familiar sadness accompanying the recognition that Simon isn't a typical kid, and this isn't a typical team.

Under what may have been a frighteningly cheerful facade (I may have been grimacing more than smiling), I'd been harboring the secret fear that Simon wouldn't, or couldn't, participate. That he'd resist the structure of the game and the instruction of the coaches -- essentially, I was terrified that he'd be unable to handle a team created with the sole intent of including children like him. "Then," I asked myself, "what will you do?" 

As I feared, Simon melted down multiple times. He had trouble catching, and throwing, and holding the bat. He couldn't keep a glove on his left hand. He'd run away, lost interest (and the ability to stand upright), refused to share the ball, and he'd cried for mommy. A lot. But, instead of sitting him out, giving up on him, ignoring him, or simply indulging him by letting him do his own thing, the coaches kept trying. And they were largely successful. Simon caught and threw a few times, hit a ball from a T, and ran all the way around the bases (actually, he kept running... we had to catch him).

We discovered that, because the League didn't give up on Simon, Simon didn't give up on playing. This week, only his second time on the field, he did so much better. Instead of tears, he started to say "I did it!". Instead of constantly looking for mommy, he began to look for high-fives.

League of Dreams is not a typical team, because none of the people participating are typical. The children playing have a wider array of challenges than I could begin to describe. The parents have been/are going through circumstances most moms and dads can't begin to imagine, yet they still stand, and cheer, and walk, or carry, or wheel, their kids around the bases. Though I am sure that (in addition to a love of baseball) many of the coaches have personal experience with a special needs individual, and therefore added insight into their -- our -- needs, they are also some of the most patient and positive people I have ever met; donating their free time to improve the quality of life for people the rest of society mostly tries to ignore.

So, consider this an invitation. If you feel it is rare to encounter pure joy, join us for a game. Every single time a player crossed home (and everyone hit runs), there was elation -- in the face of the player and the cheers of the crowd. If you doubt that true acceptance can ever be found, come to a game. I personally got more high-fives, hugs, kisses, and big broad smiles from complete strangers, than I could keep track of. To quote my Dad (who even joined us on the field), it was the best ball game he'd been to in over 40 years.

Myself, I found that before the end of the first inning any sadness I held from being other-than-typical vanished, and my heart finally reflected the sky. There was no room for clouds, we had ball to play.

Long time, no blog

I can't believe how long it has been since I posted here. Life got the better of me, and even my "super mom" persona wasn't enough to bail me out. Like most working momma's, I got really, really in-over-my-head busy. But, I'm not complaining, because it was all good stuff that I seek out and take on myself. Work projects, end of the semester student needs, kids. In giving over all my attention (and waking hours of which there were way too many or not enough, I'm not sure) to these great causes other stuff suffered. Like sleep. And yoga. And housework. And cooking anything that didn't come frozen from Trader Joe's. And blogging.

So, my house became a wreck, my fanny spread proliferated just in time for swimsuit season, and I've been out of touch with friends and blogs. And then, last week, things settled a bit. The semester ended, some projects finished up, and I finally cleaned, did laundry, went to the grocery store, and punished myself with a few really long hot yoga sessions to get back into form. Unfortunately, I tried to get back into the groove a little too soon. I swear my brain shut off on its own. Some sort of latent survival instinct I suspect.. Anyway, I spent a few days in blissful burn-out mode (thank goodness it was already a long weekend, since I was mentally gone anyway), sitting on the deck in the sunshine watching the kids play in the inflatable pool, and having maybe an extra glass of vino or two.

Sigh.

The mental vacation concluded and I'm functional again. (Yay!). Fortunately, the children have survived all of this, and pretty well, overall. Kids are resilient! I'm looking forward to getting my blog groove back, I did miss it.

Tomorrow is "Opening Day" for League of Dreams, the special needs baseball team we've signed Simon up to try. I'm excited for him to start this new adventure, and it seems like a good place to re-open the blog posts.

See you then!