Losing Our Marbles

The other night, Olivia announced rather matter-of-factly that a couple of children she'd been hanging out with the previous day did not like Simon. For a moment, I think I stopped breathing. I was startled by the candid cruelty of the statement, and I had about 20 different thoughts at the same time.

"What?"

"Who wouldn't like Simon?"

"Did I hear that right?"

"What did Olivia say to them?"

"What?"

"Were they mean to him?"

"WTF!"

"Did he do something gross, or provoke another child?"

"OMG, how do I handle this one?"

After a long moment of silence, I told Olivia that the statement wasn't nice. She immediately sobered and looked away as she does when she's upset, or embarrassed. I asked her why she had said what she did, and if the kids had said something about Simon or to Simon -- if so, what? And how had she handled it?

After some prodding (she was worried she was in trouble and was reluctant to share), she told me that the kids had NOT actually said anything, she had assumed they didn't like Simon because they didn't play with him or talk to him, and because he sometimes took toys away from them and put them in his mouth. She also remarked that he drooled a lot, and she was worried the other kids thought that was gross.

Oh, dear. And wow. And crap, what is the best way to handle this?

I have no idea if I handled the situation properly (I must have lost the handbook), but this is what I did: First, I told Livy that, because she had said something very hurtful about Simon which was based on assumption rather than fact, she was going to lose some marbles.  [We're on a token system for rewards and discipline with Livy -- when she does something good (chores, being kind, doing well on a test) she gains marbles from the out jar to the in jar. When she does something not good (teasing her brother, forgetting to feed the cat, rolling her eyes at us) they go from in to out. When she gets all the marbles from the out jar into the in jar, she gets a reward of her choosing -- right now she is working towards a video game party with a few friends.] I also told Olivia that the best way she could earn them back was by being kinder to Simon.


Over night I had time to think more, and Brian and I talked. Simon doesn't notice when other children choose not to play with him, because he doesn't understand how reciprocal play works yet and he's happy to simply play near other kids. He doesn't get sharing (he knows it exists, but not why you might want to do it to make friends). He doesn't notice when people stare at him, or are dismayed by his drooling or diapers. Simon is just happy being himself, doing his own thing. I admire this about him, and try to keep it close to my heart, especially when I worry about his reception in the world. He is himself, in the present, and that is enough.

But Olivia sees and understands everything, more than most children her age. She especially seems to cue into the non-verbal signals people relay, and is very sensitive to them. She worries and is nervous both for Simon, and herself. She loves him, accepts him, and is a great big sister; but she's also a self-conscious second grader worried about being accepted herself, making friends, and wondering what other people are thinking about her and her family. She sees that Simon isn't fully accepted, and she doesn't know what to do about it, or what it may  mean for her. I know she would step in if someone were actively mistreating him (I've seen her do it), but this more ambiguous stuff she's not sure how to handle, and it upsets her.

What a tough thing for a little kid to try to figure out on her own.

So the next morning, we had breakfast as a family and talked. At first Olivia was quiet as Brian and I explained in more detail about the differences Simon has, and the challenges he faces. We told her that we worry, too. We love Simon and want everyone to see how great he is, but sometimes, we know people don't see it on their own. We told her that, just as Simon is special, we are special as a family. We have the ability to make other people see that individuals with differences are awesome -- and, just like anyone else, they deserve respect, kindness and love. We told her we know that, as Simon's sister, when it's just her and other kids without grown-ups, it can be harder to explain. We let her know that we appreciated how tough it can be, and love her for being so strong, so loving, and so amazing.

Then the floodgates opened. Olivia cried and cried and told us how worried she has been about Simon. That she doesn't like how many doctor's appointments he has, and how much therapy he needs, and that he had seizures and had to go to the hospital and be hurt. She worries about him not getting to play like other kids and have fun. She wishes he could just be a normal kid.

Oh, how my heart hurt. Still does. I held her and told her I, too wish Simon didn't have so many challenges. That I hoped in the future Simon would overcome them, but in the meantime, we all needed to understand that Simon IS a "normal kid." He's just his own kind of normal, and that is okay.

Then, with his uncannily perfect comedic timing, Simon crawled into the living room, cymbals in each hand, yelling "CRASH" as each pounded the hardwood floor and laughed like a maniac.

Olivia laughed, too. So did I. I turned to her and said; "Does he LOOK like a kid that isn't having fun?"

"NO!," she laughed. (Simon let out another crash and squeal).

"See," I said, "We're totally normal."

And at the moment, everything was.

Until later that afternoon, when I stopped in the book section at Target. I knew that Holly Robinson Pete had written a book about her Autistic son from the perspective of his sister ("My Brother Charlie"), and I thought maybe I'd find it there for Olivia. I did, and decided to read through it before buying it. Halfway through the picture book, as I read the wishes of the little girl for her brother -- which so closely mirrored Olivia's -- I realized I had tears running down my face. At which point, a mom of a child Olivia is friends with briskly walked past me. She'd seen me and kept going, crazy woman that I was in tears over a children's book in the middle of Target (we later caught up and had a lovely chat about me being a crazy woman in the middle of Target).

My God, I thought, I really have lost MY marbles this time... and just like that I was laughing to think of cymbals on hardwood floors, marbles in jars, and my sappy, silly, brave and crazy family. No, we're not normal. Not at all. Hell, we put the "special" in special needs some days, and I swear we are better people for it.

Adaptation

Being a parent is all about being flexible, trusting your gut, and being persistent. When one thing isn't working, you try something else, and you keep trying until you find what works. When you have a setback, you adapt.

My sister (who had her adorable baby this week!), has just gotten her first taste of this.

Luke on his birthday!

She's been trying to establish breast feeding (oh what fun that was...), and, like most new moms I've known, she's hit some bumps in the road. She and her husband have already had to endure the minefield of various and conflicting professional opinions; all while trying to get a few minutes of sleep, and tamping down the flood of post-baby emotions. When she called for my opinion, I suggested some alternatives, but - most important - I told her to go with her gut, be flexible, and try not to let setbacks deter her.

This is something I am continuing to learn the hard way.

Simon needs extra help and adaptations with basic skills and participation in most activities. Special doctors, special education, therapy, and small/private classes with specially trained instructors for extra-curricular activities are just some of the ways we've found to help him grow, learn and attain a better quality of life. In addition, we're finding that sometimes he requires adaptive toys and equipment. We're also finding that as soon as the tag "special needs" is applied to a product or service, the cost often goes up exponentially.

As the parent of a "special needs" child, it isn't surprising that I need extra flexibility and reserves of confidence. I have found that, although some days we have to dig pretty deep to find that well of patience and determination, it is there. What I haven't yet found is an endless well of cash.

We are lucky that we do have resources. We have good school services, good insurance, and we are both working. And I understand why private lessons, small classes and specialists of any ilk cost more than "average" services, and I don't complain when we have to pay deductibles and/or out of pocket for a lot of things. However, there are many things that insurance doesn't cover -- like tricycles, umbrella strollers, most technology assists, high chairs, and therapy toys. Which is fine, because all parents pay for toys and gear. I just don't think that it should cost the parents of a child needing a little extra help several times more the cash.

For example, I don't see why a slightly larger folding umbrella stroller starts at $699 :

MacLaren Major Special Needs Stoller ($849)

Or, why a larger tricycle with a seat belt and foot straps costs $1,125:

Rifton Tricycle - small ($1,125)

 
I don't know about you, but to me this seems like a total "gotcha."

But -- they don't have me just yet.

Currently, Simon is still pretty small for his age, and we've been able to use larger versions of regular strollers (jogging strollers can hold a pretty high capacity), potty seats, and toddler chairs, to help him sit correctly and endure longer outings. But he's growing, and though I'm optimistic that he will eventually outgrow the need for many special assists (because he is extraordinarily adaptive), I know that he will continue to need some of them.

So I've got to be creative, and flexible. This spring, I will attempt to "adapt" a radio flyer trike with the help of a box of extra large velcro. I'm currently ebaying for a deal on that larger umbrella stroller. This past week, when our therapist recommended we buy vibrating oral-motor stimulators to see if they helped with Simon's drooling and need to put everything in his mouth:

 

 

Jigglers ($26.95 for a set of 2)

I thought about what the goal was (oral vibration and chewing) and opted for this instead:

Infantino Vibrating Grape Teether ($8.95)

Which I found in the baby section at Target, no shipping necessary (bonus!).

These swaps may seem like no big deal, but the little things really do add up. I've read that the divorce rate for parents of special needs children is as high as 70%. When marriage counselors are asked what the leading causes of divorce are, they site stress over illness and/or finances. From this vantage point I can easily see how one thing leads to another, especially in the form of unavoidable medical and therapy bills, and overall uncertainty for the future. There is a clear impact on time, relationships, and everyday life. 

I can see it, but I also see another road. If together we can keep trying to follow the wash/rinse/repeat mantra of flexibility, confidence, and, instead of sweating the small stuff finding alternate solutions, maybe the "big stuff" will have less of an impact when it hits. Which it has, and will again. At that time, as a family, I am confident that we will adapt.

Enabler

Yesterday afternoon we were (finally!) back at KKI to begin outpatient OT on a weekly basis with our awesome OT from the CIMT program. This time, we're mainly there to focus on "self care" skills; like dressing, toileting, and feeding -- things that school-based therapy really isn't meant to focus on (though I know they help as much as they can). Additionally, we are working to develop a "sensory diet;" a series of tactics and techniques to help Simon mitigate the affect of his sensory processing disorder on his daily life.

During our first session, which I got to sit in on (yay!), the OT spent quite some time working with Simon on dressing and undressing -- about 15 minutes were dedicated to socks alone. As I watched Simon struggle to aim his toes towards his little blue socks, I remembered what a struggle it was to get his big sister dressed when she was a toddler.

Olivia was all about "I do it MYSELF" when she was 2. Every day, she had to choose her own outfits and put them on however she saw fit, which sometimes took extra time and often led to some interesting combinations (usually involving a tiara or tutu.. ). As I reminisced about those days, it occurred to me that Simon has never been through that phase. Not once has he ever asserted himself in that manner. For the most part, we perform all of his self-care tasks for him, we try to encourage his involvement, but sometimes -- especially when we're in a hurry -- we'll just power through the tasks in as streamlined a manner as possible, so we can move ahead to the next thing on our collective agenda.

I realize that, though we do things for him because he really does need the help (and we'll continue to be there to assist him with whatever he needs for as long as he needs it), by constantly doing things for him we not only enable his dependence on us for basic tasks, we're enabling his apathy when it comes to finding his DIY-drive. So I've decided to begin my own at-home therapy program. I'm calling it "Enabling the Id." Just because Simon seems to lack the typical toddler id-driven desire to express his independence, it does not mean I can't try to help him find ways to develop the ethos of "I CAN DO IT MYSELF!"

We started with lunch today. When Simon told me he was hungry, I opened the fridge and asked him what he wanted (a turkey bagel with cheese, carrots, and chips -- big surprise). But, instead of getting it for him, I helped him get it himself. He pulled the turkey and cheese out of their bags. He selected his bagel. He picked his carrots out of the crisper (one at a time), and put them back when he finished. He got his chips from the pantry and he assembled everything onto his plate and helped me carry it to the table.

I broke each task into single-step directions, which he executed with assistance, guidance, reminders, and lots of encouragement along the way. Instead of taking five minutes to make his lunch for him, it took about a half an hour to make it with him. But, he never got frustrated, or wanted to quit. He chose each item himself, and he followed through with each task, even when I made him use his left hand to grab the carrots. And, though, he didn't exactly celebrate with me when I exclaimed with exaggerated glee that he was a "big boy who can make his own lunch!!!," I think he really did enjoy that turkey bagel, down to the last bite.

A League of Our Own

Over the past several months, ever since Simon's stay in the PICU, we've been on a bit of a roller-coaster ride. We've had many ups -- the fact that he survived the seizure intact and hasn't had any more, the progress he made through the CIMT program, and his awesome new iPad skills (I just watched him play a matching game like a pro!), to name a few. There have also been a lot of downs (sorry, I'm going to leave them out. They are so not as much fun to list).

Overall, I'm feeling pretty ready to get off the ride... constant worry and stress and hyper-vigilance have made me queasy and I am ready to step back onto solid ground. I'm also tired of having to view Simon through the murky lens of disability -- what can't he do, why can't he do it, how can we address it... etc. I know that it is a necessary viewpoint, and that it is important for us to be aware of and address all of his needs, but sometimes, I just want to look at him as a KID.

Last week, in a conversation with Simon's teacher, she told me she didn't really agree with the PDD-NOS diagnosis (wherein I explained the brain-damaged/atypical aspect of it, as it was explained to us.. but I digress...). Anyway, she remarked that to her, Simon was very similar to many of the other children she has taught with CP. She also said that it was too bad he was the only one with CP in her current class, because in the past she has had as many as seven CP kids at a time. When I told her that the only other person I knew with CP was an adult and much more affected than Simon (therefore not a great means for comparison), she was surprised. I kinda was, too.

Though I've seen many children with various types of CP at doctor and therapist appointments at both Hopkins and KKI, and though I've made lots of small talk with their parents (who, most often, are not remotely local), I don't know any other children like Simon. There aren't support groups or community programs specifically focused for CP the way I know there are for Autism and Down Syndrome. I've scoured the web for resources, and I've found a couple of blogs (FYI, the blog www.lovethatmax.com has been the closest comparison and the best to read. Max is a few years older than Simon, and just as cute), and a few service-provider-type resources (as in more doctors, therapy and even lawyers), but nothing like a playgroup, which I know Simon would love, and I would too.

We've been a bit of an island, so to speak. And once again, the obvious hits me back up-side the head. No wonder this is so depressing, so isolating, so scary and unknown. I DON'T KNOW ANYBODY.

Therefore, how could I possibly know what a "typical" CP kid was like? I solely depend on our doctors and therapists for their evaluations and assessments, based on their knowledge and experience.  It's all I have, and I've always been told that each case is completely unique.

But.... how great would it be to see other children like Simon side-by-side, to talk to their parents, to compare notes and victories and battle scars? How great would it be for Simon to see other children like him, and maybe have the chance to build friendships through that association?

So, those thoughts have been running through my head the past few days. I've even been considering how far I could personally go trying to start a monthly playgroup, but I'm not sure how successful that would be. So far, I haven't gotten past the how-will-I-find-these-people-if-they-even-exist stage, to move onto the but-will-they-want-to-play-with-me stage.

Regardless, there is one thing that I DO know for sure. Like any other kid, Simon has the right to have fun -- to engage in extra-curricular activities that aren't therapy, and to be around other kids like him. Therefore, when I saw that a local magazine was sponsoring a summer camp expo this weekend, and that they claimed to have a camp for EVERYONE, I drug the family out in the rain to see if there was a chance they might have something for Simon.

When we got there, we found rows upon rows of tables advertising all manner of camps for "typical" kids, tailor-made to appeal to burgeoning talents and physical prowess. In this environment, I found myself grateful that I'm also the mother of a slightly advanced "typical kid," or I would probably have found all those options far more depressing than enlightening. Sort of a "look-at-all-the-cool-stuff-your-kid-can't-participate-in" gauntlet. As it was, I did find three camps that seem great for Livy: Art Camp, World Peacemakers Camp, and a Math Camp. Olivia also scored a ridiculous amount of swag for both herself and Simon.

I was starting to lose hope I'd find anything for Simon. Indeed, it wasn't until I got to the BACK CORNER of the very large and crowded hall that I found a cluster of camps for children with special needs. (Don't get me wrong, I'm glad they were there. But seriously -- the back corner?!? Once again, I digress...)

Unfortunately, Simon is too young for all of the camps we found. However, I did get literature from a couple of organizations, like The Arc, which is an advocacy group for all people with developmental disabilities; and Pathfinders, an Autism group that sponsors family programs. Neither are specifically for CP, but hey, it is a start.

Then, I found something amazing: A BASEBALL LEAGUE!! For children as young as five! And, when I explained to the guy at the table that Simon was a lot younger than five cognitively, he smiled broadly and told me to come out and give it a try.

"Everybody gets to be a part of our league" he said, "Everybody can dream. We don't turn anyone away." (why do I always get teary when people are nice to me?)

Then, he handed me a flier, full of photos of smiling kids wearing brightly colored "League of Dreams" T's and baseball caps, which would (of course), be adorable on Simon. But, unlike the rows and rows of "typical" sports-clad kids I had just walked through, which practically yelled "Not for Simon" from their glossy surfaces, some of these children had wheelchairs, some had walkers, and some had leg braces -- just like the ones Simon wears. They also all had broad smiles, just like Simon's.

Who's ready for some baseball?!

Spread the word.

I'm a little bit late to the party (what's new!?), but yesterday was National "R-word: Spread the Word to End the Word Day."

http://www.r-word.org/

As a kid that had been teased for being awkward and bookish (hard to believe, I know!), I'd been taunted with "retard," so I didn't use the word myself, even before I had Simon. I thought it was crude, and childish (well it is). But, beyond that, I'd never especially noticed or took issue with other people using it.

My feelings changed dramatically a little over a year ago. In an earlier post, I recount the first time a doctor suggested to us that Simon might fit an MR diagnosis, and how difficult it was for our family to cope with. In the week following that appointment, when the news was still raw and my sensitivity heightened; I was shocked by the amount of times I heard the "r-word" used in casual conversation, especially by my students. Under the intense spotlight of my new association, the careless way these educated and overall extremely nice young adults used the word as slang was an awful revelation. They said it when they made a mistake, when a friend made a silly remark, even when they were simply irritated or annoyed by a person or a situation. Every single time I heard it, I felt that I'd been stabbed in the heart, and with each stab I was surprised by how much I could now be hurt by something that had always been there. 

Initially, each time a student said it, I'd simply say "we don't use that word, it isn't nice" and move on. They didn't know about Simon or our family struggles -- it wasn't something I ever talked about. However, it only took a few weeks, and what seemed like dozens of derogatory comments about my baby, for me to crack.

In a group critique a student referred to their poorly drafted solution as "retarded." I tried to quickly correct both the terminology and the solution, but the student persisted further self-denigrating their work using the "r-word." The student had no idea how it was hurting me, but finally, with my eyes closed, I firmly stated that their work was not retarded, nor were they. "Moreover," I said,"you should not use that word in a professional context -- or any other. You never know when someone -- like your teacher -- has a child with a cognitive disability."

You can imagine the whooooole lotta awkward silence that followed.

As I turned back towards the work on the wall, I could feel my face burn and my eyes sting. I didn't want the students to see my embarrassment, or my hurt. I immediately felt badly for "making an example" of the student. I was profoundly grateful that class was almost over.

After class, the student apologized, and I told them I knew they meant no harm, but I asked them to be more aware of their speech. I'm pretty sure they will be. 

Today, I have no problem calling people out for using the "r-word" inappropriately, and I've come to take it less personally.  I try to be nice, and non-judgemental, but I stand my ground even when they argue with me. It is my small way of trying to make the world a better place for my kids.

I do, however still struggle with "labels."

I firmly believe in a "call it like it is" approach to life; clearly understanding something is key to making progress, and a part of that is finding definition. However, I also hate the idea of putting any sort of limiting definition on my young son. It can feel as though we are predetermining his life's trajectory through medical diagnosis and fear of the resulting social ostracism.

When Simon was a baby and I first suspected that he had Cerebral Palsy, I was strongly discouraged from pursuing my speculation further by a therapist and a doctor who felt I shouldn't try to "label" my son. They made me feel like a bad mother for my suspicions, and because of that, I delayed my search for answers -- and appropriate help -- for many months. When I finally found the strength to put my foot down, it took mere minutes for a specialist to diagnose Simon and set us on the right path to more effective therapy and a broader understanding of how to help our little boy. I deeply regret that lost time.

Currently, we are still struggling with "labels" for our little guy -- with getting an accurate diagnosis, and thereby finding effective treatment. Some of our teachers, therapists, and doctors even conflict with one another on the use of labels, specifically with Simon's recent diagnosis. Which (of course!) complicates things. Fortunately, everyone seems to agree that Simon doesn't fit MR, and we're grateful. Grateful because it gives us even more hope for the future, and, to be frank, grateful to forgo another damn label.

However, I can't help but think that if there were no social stigma involved, our challenges wouldn't be quite as challenging. Doctors, teachers, and therapists might be more free to look for answers and seek help if they were less preoccupied with the social stigma of labeling a child, and freaking prejudiced parents out. I would still stay up at night worrying about my son's future, but I might worry less about someone inadvertently hurting him, making him feel stupid or simply less worthy because of his cognitive and physical differences. All because of labels that define his challenges, but that don't define HIM.

I wish that instead of seeing the name as a negative, we saw it simply as a way of understanding a situation, not a person. To be honest, the situation sucks a lot of the time. But, the people dealing with the challenge are almost always amazing.

The only way we can approach this modest utopia is for people to stop -- as a collective whole -- using the language of differences in a hateful or simply pejorative way, even in jest. It doesn't stop at "retarded," either -- because I agree with folks who conjecture that if you stop using one word something else will take its place, and eventually we'll be looking for a new PC term to replace our formerly PC term. The solution is to stop using ANY hateful language that gets its meaning from stepping on someone else's humanity.

And so I'm asking -- parent to parent, sister to sister, friend to friend, teacher to student, student to teacher. Don't just stop using the R-word. Stop using hate language altogether. Don't just stop using hate language, call upon others to stop as well. When you hear someone say it, or when you say it yourself in error, call the foul and take one for Team Simon. I know if you are reading this, that you will do that; for me, for Simon, and for everyone dealing with the challenge of differences in an increasingly homogenized society. We are ALL better than that. 

Go Team.