cerebral palsy awareness – Change Perceptions http://www.changeperceptions.net CP: Breaking Expectations on the Daily Mon, 27 Apr 2020 13:43:05 +0000 en-US hourly 1 https://wordpress.org/?v=6.3.1 Relentless Commitment http://www.changeperceptions.net/relentless-commitment/ Mon, 27 Apr 2020 13:43:03 +0000 http://www.changeperceptions.net/?p=4152 In the first year of Amichai’s life, he had one PT session and one OT session a week. I was given homework to do in the interim – daily stretches and exercises that worked to strengthen his right side. Here’s the thing with me and homework – I have always done my homework. I have always done the task I was assigned because I believed it would help me get better at whatever I was trying to achieve. I studied hard, I didn’t cut class, and I did my homework. I did the same with sports. I practiced hard, I didn’t skip, and I stayed after for more work. I put in the time, I put in the reps no matter what. I might very well be a dork, but I found comfort in this routine. I found success in this routine. And I believe all of this – my commitment to doing what I’m supposed to do, day in and day out even when I didn’t feel like it – it was all training ground for the most important homework I would eventually be assigned.

It turned out though that the challenge wasn’t in the actual homework but rather in finding a balance. And that is an ongoing project that improves as time grants me perspective.

That first year – I was relentless. Diligence, persistence, consistency…its like money time for me. All day every day. I remember Amichai’s OT put him through a month of intensive constraint induced therapy. In addition to our regular routine, she asked me to spend another twenty minutes each day working on specific exercises. He had this little glove to put over his left hand so he could only use the right hand. There were toy cars and beads and other small objects that Amichai had to try and pick up. She asked that I fill out a chart each day detailing how long we worked and what Amichai accomplished. When we met after the month and she went over the chart – there was a look of shock on her face. Wow – you really did it every day. I returned the look of shock. You told me to. Was there an alternative?

I promise you I am not a nut ball. I promise you I am not one of those crazed parents with a stopwatch and whistle.  I promise you that Amichai has never ever been overworked and he certainly was not overworked in his first year of life. But in that first year – I was overworked. Overworked in establishing a regular routine and tedious habits because no – there really isn’t an alternative. His well-being depended on it. But my approach needed balance – our well-being depended on that. I felt guilty if we didn’t complete the entire regiment. I felt I failed if we skipped a day. I wouldn’t say I was missing moments as a mom, I just couldn’t fully enjoy the moment if I hadn’t yet checked that box.  The regiment loomed over me…There is price to pay for diligence, relentlessness – you can never relax. Because in the biggest homework assignment of my life – how could I not get it right?

Getting it right. A more experienced parent will tell me that is wildly naïve. I wouldn’t disagree, but at its core – for me – getting it right is simply an unwavering commitment to the kid. But what I needed to understand was that that commitment is composed of so many different features. I am not his PT, his trainer or his coach. I’ll wear the hat sometimes but that’s not my title. I’m his mom. Our relationship, our life together – it could not be one-dimensional.  It wasn’t just about CP. It wasn’t just about a regiment. How could it be? My commitment to him, to us – it had to include a space where we could relax, where we could simply be Mommy and Amichai. For him to know me and me to know him – because the last thing I wanted was for CP to define us. We are so much more. So, I tried – relentlessly – to strike this balance. If we didn’t manage to get in all our work that day or even at all – I tried letting myself off the hook. I allowed myself to just enjoy our time together. And slowly, I began to relax.

The balance I was trying to strike got a major boost when Amichai turned one and he started his preschool program. He received all his therapies there and the pressure to do everything was lifted from my shoulders. Besides for a series of daily stretching, I was relieved of my duties. And I was relieved. But a month ago, all my anxieties started coming back when school was shut down due to corona. He needs his therapies. I needed to get in gear. My first call was to his PT. What should we do? She sent me a program, she said we can do it every day – it shouldn’t take more than 15 minutes – and then added a caveat: If you don’t do it every day, that’s ok too.

Still the familiar pangs of pressure come back. I’ve built Amichai’s schedule around his exercises. Fifteen minutes each day for his upper body, break do some other activities and then fifteen minutes for his lower body. And every time we finish the exercises for the day, the recognizable sense of relief washes over me because we completed our assignment. But I hope I’ve also managed to put a premium on other things that are just as important, more important. We paint. We build. We blow bubbles – Gabe even made bubbles. We pitched a tent on the porch. We go outside and ride bikes. We even collected two snails and made a little home for them. He wanted to play baseball. I taught him how to stand, keep his elbow up, eye on the ball. I jumped up and down when he hit the ball, major fist pumps. He grinned, proud of himself, but also a look in his eyes that said – who said I can’t.

That is the moment I will remember from this corona insanity. That moment and every time he brushes his teeth and makes funny faces in the mirror then challenges me to make the same face – like that Mommy, every time he reaches for my hand to hold just because, every time we play catch with the football, every time we have a race, every time he wants to join me for my own workout, every time he shows me the lego rocket ship he built, every time he wants to tell me something funny, every time we play hide and seek and he establishes himself as the worst hider in history because he can’t contain his laughter…

The regiment of routine stretching, and exercises is just a fact of his life, of our lives. It will never change. And I won’t ever be able to fully let myself off the hook. I will remain diligent and relentless because, well I just can’t shake who I am. But that’s not all of me. All of me is wrapped up in that little kid with the wide eyes and skinny legs – and together we try to strike that balance. Because really, what is the alternative?

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Graceful Anger http://www.changeperceptions.net/graceful-anger/ Sat, 25 May 2019 18:47:27 +0000 http://www.changeperceptions.net/?p=261 Amichai had tendon lengthening surgery in the beginning of April. After much research, deliberation, second opinions, and more deliberation – we decided to go through with the procedure. The surgery entailed lengthening two muscle tendons in his right hand and arm – the adductor and FPL. The goal of the surgery was to bring his thumb out of his palm so that he would be able to use his right hand more efficiently.

Explaining to a five-year child that he will undergo a surgery is challenging.  The what, when, why and how are all subjects that must be covered but it is a delicate balance between offering too much detail and not revealing enough. Amichai is a child who likes to be in the know, but he is also a child who can scare easily. There are times when he jumps at the sound of another car pulling into a parking lot…and now I was supposed to explain that a surgeon was going to cut into his hand…But, with the help of the school staff – Amichai was very prepared. His teacher made him a book about what would happen. It was short – prepared in a language he would understand and to the point. I also explained to Amichai to him why he was getting the surgery – to help his right hand get stronger. To be honest, I was expecting an extreme freak out when all of this was laid out – which would have been completely legit. Surprisingly, he took it all in stride. A bit apprehensive, but there was almost a grace to which he was accepting everything…still, I was bracing myself for the eventual melt down.

The day of the surgery came and Amichai was as calm as a cucumber. I was certain that that melt down was just around the corner, but it never came. When I reminded him that he couldn’t eat – he just said he wasn’t hungry anyway. When we were going downstairs to the car – he skipped happily to the elevator. When we arrived at the hospital – he held my hand but walked confidently through the hallways. He actually helped to calm me and quiet the scenes I had played out in my head of dragging him kicking and screaming into surgery. And while there were more than a few tears when the time finally came (unfortunately, he didn’t go in until much later than scheduled), again – I saw that same grace emerge and the boy handled it with a maturity beyond his years.

The surgery was about 45 minutes, but it took him a while to recover from the anesthesia. When he noticed the cast on his arm – I thought, this is it – this is where he loses it. Except that he didn’t. He looked at it with mild interest and then turned his attention to the ice pops the nurse was handing out. And this is how it had been the entire process – each time I anticipated the melt down – Amichai was one step ahead of the game. He was prepared. He was graceful and resilient. A few days ago though – a week and half after the cast had been removed and I thought that we were in the clear, it came…except not in the form I had expected.

Once a week, Amichai goes to the child psychologist – a woman who has been an absolute rock star. There is a real talent in being able to glean spot on insight through play.  When he’s in her office, I hear elaborate schemes of flying into space or superheroes saving the day. I hear how animated Amichai is and I hear his laughter. But this time, after about 40 minutes -he suddenly opened the door and came running out. He wasn’t crying or upset, in fact he was smiling and almost giggling. I looked at my watch knowing it was a little early and asked if he was done. He just looked at me and shrugged his shoulders. I peeked my head into the office and the psychologist motioned for me to come in.

What happened? She explained to me that one of the little figurines they play with is a doctor. They were playing out some scene where another doll had to go to the hospital. She gave Amichai the doctor and told him that this doctor can operate on patients just like his doctor had operated on him. Game over. Amichai got very upset. He threw down the doctor and said something to the effect that he hates doctors and he doesn’t want to see them ever again. After that he picked himself up and walked out.

My first reaction was to apologize for the outburst. Don’t, she said. He’s angry. He’s angry he had to have surgery. He’s angry his body doesn’t always work the way he wants. He’s angry that sometimes he doesn’t feel strong. My heart sank.

I am keenly aware that while the experiences Amichai and I have are intertwined, they are not one of the same. Of all the emotions I experienced when I learned that Amichai had CP – anger was not one of them. There were moments after Amichai’s birth where I would think about him in the womb, just a few days or weeks prior -when he was perfectly ‘normal.’ I couldn’t wrap my head around what had happened. I was confused, unsettled, anxious, scared maybe even sad – but I was never angry. And in fact, anger scares me. I’m human, so I’ve had a bout or two of rage – but angry people are just downright frightening. It consumes them, controls them, and leads them down a path which is very very dark. I didn’t want to go down that path just as my journey into motherhood was beginning, and I certainly did not want to project that onto Amichai. Although I was facing immense stresses, I was certain that the child in front of me represented hope and optimism. Something greater than me. And so, I clung to that instead of the darkness.

But Amichai’s experience is not mine. While he likes to walk around in my Adidas slides, we will never really be in each other shoes. I don’t know what it is like to be him, and I certainly can’t tell him he shouldn’t feel angry. I just don’t want him to be angry. I looked up at the psychologist and she probably read my mind. She said to look outside into the waiting room. There was Amichai, jumping around and practicing his ninja moves. He is not an angry child, but he’s allowed to have moments of anger. She said he was brave. He went along with everything because he knew this was good for him. He understood that he needed to act like he was on board, and he even was on board – but the frustrations remain. Anger is part of his experience.

Her thoughts challenged me to take a closer look at my own approach. My optimism is not fake. It does not cover up anything I wish to push down. I am steeped in the reality of CP, but maybe – I use my optimism to protect Amichai. Because as his parent, I’d give anything for him not to go through the agony and the sadness. I don’t want him to feel as though he lost something. If I just impart to him how strong he is, how great he is – than maybe he can avoid the darker moments of self-doubt. But that’s not reality either. I understand the value in facing the struggle no matter how hard it is. Amichai will have to go through his own process of acceptance, and I will need to accept it will be painful and frustrating. He will get angry. He will get upset. He will want to have a meltdown – I need to let him. Because ultimately, it will make him stronger and bring him peace.

And maybe I need to understand that there can be something cathartic about anger if directed in the right way and used responsibly. Amichai has what to be angry over, but he is not consumed by it. He is simply trying to figure it out on his terms. He expressed his anger in a safe place, he acknowledged that he was hurting and took a moment to put it in its proper place.  When Amichai walked out of the psychologist’s office, he seemed lighter.

And that too is grace.

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The Search for Surgery http://www.changeperceptions.net/the-search-for-surgery/ Wed, 23 Jan 2019 13:41:04 +0000 http://www.changeperceptions.net/?p=257

After being in the NICU for two weeks, the nurse called me early one morning and casually said, He can come home today. I needed her to repeat that. He can come home today. I felt a wave of relief, happiness, excitement… but it was short lived. Soon those feelings were replaced with another wave of emotion – panic. While Amichai was deemed strong enough to come home, how were they so sure I was up to task? If any mother ever tells you that she left the hospital with absolute confidence in her ability to care for another life…well, she’s lying. And yet, the hospital sends hundreds of mothers off each day believing they can handle it. This blind trust always amazed me even under the best circumstances. A life is entrusted to you without any practical knowledge or understanding of what that life needs. I can’t think of any other job in the world where in the prior experience section you check off none and yet for some crazy reason – you’re hired. I was so far out of my league.  Amichai was in the NICU. He had been hooked up to monitors and screens for two weeks straight. He was on two anti-seizure medications – one of which needed to be administered at 4 a.m. Suddenly, they were handing this little life off to me and saying, ok your turn – go handle it. Panic.

The learning curve is steep and quick. There is very little that will prepare you for being a mother. In those first days and weeks, I was swimming underwater – things were always just a little blurry and every time I surfaced, I was gasping for air. But soon, with the help of my own mom – I found my rhythm. I put Amichai on a schedule. I figured out the best way to burp him and bathe him, I learned that he did not care for the pacifier but liked my pinky finger instead, I discovered the best way to avoid getting peed on while changing his diaper, and I became an expert at administering his medication – even at 4 in the morning. Still wasn’t easy, but I was managing. Maybe the nurses knew what they were doing. Maybe I could care for this life.

Five years later, I am certainly convinced that I can care for my kid. I am confident that I know what is best for Amichai; yet, I still experience moments when I think to myself – am I qualified to make that call? Lately, that question has been swirling around in my head as we begin to research surgeries. There is no cure for CP, but there are surgical opportunities that work to reduce spasticity. Once spasticity is reduced, the hope is that function and movement will improve. Tendons and muscles can be lengthened or replaced, joints can be realigned, nerves can be cut…over the past week I have learned thousands of new acronyms and abbreviations for any and all surgical procedures – TIP, SPML, SDR, PERCS…goes on and on. Each surgery has its own set benefits and drawbacks, each surgery has its own set of expert surgeons associated with it, and each surgery has its own set of parents who laud it as life changing.

I want nothing more than to provide a positive life changing surgical experience for Amichai. He deserves it; yet, as I sifted through the material, I felt a familiar sense of panic. Intricate medical details, scientific studies – I understand the words I am reading, but how am I equipped to make this decision? Last time I checked, there is no MD, PT, or OT after my name. Obviously, I have consulted with Amichai’s therapists – they work with him every day and have a clear understanding of his needs. They have made efforts to be at each doctor appointment. They have assured me that they are there to assist and present their informed recommendations. Superstars. I also know that one appointment with one doctor does not seal the deal and there are other discussions to be had. Certainly, it is always worth getting second and third opinions which I have begun to gather. In the end though, its my decision. In the same way that I wanted to ask the nurses if they felt confident I can handle this, I feel a need to check in once again and ask – should this really be up to me?

The responsibilities of being a parent can be daunting, overwhelming and downright scary. I remember looking at Amichai as a baby – staring deep into his wide eyes – and feeling that full mantle of responsibility. He’s so little, so vulnerable – his well-being, his health, his development – it’s all on me. That sense of total dependence is there even today – he’s only five. He’s still growing, still unable to fully care for himself…reminding him to wash his hands after the bathroom is daily occurrence. Oops, I forgot. The day will come when he will take those steps on his own, but right now – his wide eyes stare back at me for guidance. Daunting, overwhelming, downright scary. But at the same time, the responsibility of being a parent is also an empowering privilege. I was taught not to squander privilege. You work to protect it, to cultivate it, to nurture it because you did not earn it, you were gifted it and you must care for your gifts. My parents always busted out the “respect your belongings” line. I find myself saying this to Amichai and see my own eye roll in him. But, I am convinced that if there is anything in this world worth putting my time and energies into protecting, cultivating and nurturing – often to the point of extreme exhaustion – it is him.

And I suppose, when I think about that idea, I recognize that the privilege of responsibility has brought out the best in me. My dad told me long ago that I couldn’t run from it, that the only choice I had was to parent up. Even on days when I can’t catch a break, and I feel I am failing at everything – I find comfort in knowing that there is at least something, someone – I have given my all. I can still feel the victory of accomplishment in the dark moments. So, to answer my own question and quiet the doubt in my mind – yes. Yes, it should be up to me. The professional assistance is there, and my decision will be based upon the information I have gleaned from them. In fact, any decision about Amichai’s well-being has always been made with professional guidance, but no one has put more into this child than me. I must rely on that sentiment to lead me. I would never and can never pass up the opportunity to step forward and say this is what needs to be done. He’s depending on me.

Bring on the abbreviations, the medical jargon and research papers…I’ll figure it out, I’ll find my rhythm.

I can care for this life.

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Being an Athlete http://www.changeperceptions.net/being-an-athlete/ Fri, 19 Oct 2018 13:49:41 +0000 http://www.changeperceptions.net/?p=232 In the spring of 2013, I watched Louisville play Michigan State in the NCAA Men’s Basketball Championship. Having no strong allegiance to the Cardinals or the Spartans – just an avid fan of the game, I simply enjoyed watching great plays by both teams. I was about five or six months pregnant, and throughout the game Amichai kept kicking and flipping around. I knew it really didn’t mean anything, but it was fun to imagine that maybe he too was excited by the game I had loved since I was ten. Maybe he would share my love. Maybe we would spend hours together on the court, both intoxicated by the echo of the dribble off the hardwood floors and the unmistakable swish of the nets as the ball floats through.  Maybe I would teach him everything I know, maybe he would even become a better player than me. Maybe.

Fast forward four months later and I am sitting in a meeting with three doctors who are explaining to me – to me – that my son would never be an athlete, or at least a good one. Or an artist. Or a musician. Or anything that required a set of normal motor skills – that wasn’t for him. One doctor, in an attempt to be encouraging said there was child in his own son’s boy scout troop that has CP. He said not to worry, all the children clap when he is able to jump over a stick. Intentions were pure, execution poor and patronizing. My child is not a pity party. I don’t think the doctors were trying to be intentionally negative, they simply were presenting statistics and their own professional experiences based off hundreds of CP cases they had diagnosed or treated. They weren’t consciously saying to set the bar low, but perhaps they were simply trying to manage expectations. I did find it perplexing though that of all the questions they couldn’t answer – somehow, they could definitively tell me what Amichai wouldn’t be able to do.

This angered me.

And still, I continued to hear this sentiment over and over again. At his six-week check-up with the neurologist, at his three-month check-up…he’s doing good – making progress, he won’t be a good athlete but…It’s as though they didn’t see the mother decked out in Nike clothing in front of them. The thing is, I didn’t need Amichai to play sports. Even though friends and family had (jokingly?) pegged me for one of those over-zealous and crazed parents on the sidelines, I always knew there was a chance that my kid would not be drawn to sports in the same way I had, and I would be ok with that. His interests won’t be the same as mine. That being said, I certainly didn’t need anyone telling me that he can’t play sports, that he wouldn’t excel in something he hadn’t even tried yet. How can someone else – even if that someone else is a doctor – define what you can or can’t do? Even crazier, how can they define what a little baby can or cannot do so early on in his life?

This wasn’t the first time in history that doctors or medical professionals expressed some archaic idea about who can and can’t play sports. My own gender was subject to their inaccurate beliefs. Women were often targeted as being too weak and ill equipped for physical activity.  Doctors warned of young girls and women over-exerting themselves in sport. When women first started playing basketball, medical professionals were concerned they would collapse in “nervous fatigue”. Apparently, a woman has enough strength to push out a baby but it’s too dangerous to have her run the full length of a basketball court. Luckily, I grew up an era where those beliefs and myths had long been laid to rest, and I was given every opportunity to play sport. And that is what I want to give Amichai. I want him to know that if he wants to play sports, the opportunity exists equally for him. I also want him to know that if he finds a sport that speaks to him, its ok for his execution of it to look differently than a “typical” athlete. The way his body works is different, but still very capable.

Like any five-year-old, Amichai will always choose running over walking. He runs down supermarket aisles, he runs to grab a toy from his room, he runs to water the plants outside on the porch, he runs to get a snack from the drawer, he runs to the park, he runs at the park…the only thing he doesn’t do is run to bed, somehow then his pace slows to a procrastinating crawl. Someone once remarked to me that Amichai would have his own Forest Gump moment one day, running so fast he breaks free of the braces. I smiled because I knew this person was trying to convey something positive, but I’m not sure that’s how it works. People with CP don’t magically break free from their braces. They work harder for their steps than the average person, training their body to work in a certain way, demanding tasks of it that do not always come with ease. Amichai runs with a slight degree of asymmetry, the right hip always a bit behind the left, the right arm moving with less freedom than the left – but there is a lightness to his step, and a rhythm to his pace. He runs with confidence. And for me, that is the actual magic.

I saw this magic too in another runner last week when every platform I use for messaging suddenly became clogged with the Nike video of Justin Gallegos. No one does it like Nike – they can capture a story and convert the masses to believers in less than two minutes. They manufacture magic. But this time – the magic was all in the kid. I recognized the uneven stride immediately, but I also recognized the gracefulness in his determination. He may run differently but who cares because he runs with confidence. It’s not about running the same way everyone else does, it’s about taking ownership of your way and saying it will take me to where I want to go. This wasn’t some fictional movie character breaking free from the braces, this was a kid who put in the work and simply said I am capable, I can do it. Take that Forest Gump. I promise you, this is not some Nike marketing ploy – this is as real as it gets. It was real for me, and it was real for Amichai. He smiled excitedly when he saw it, no doubt seeing himself in Justin. A capable person in a capable body. Just do it, right?

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Driving Foward http://www.changeperceptions.net/driving-foward/ Sun, 19 Aug 2018 10:43:20 +0000 http://www.changeperceptions.net/?p=216 Amichai turned five two weeks ago. He’s been quick to point out that five is a whole hand. Like any kid, his birthday is pretty much a big deal and he’s showered with an obscene amount of presents. But each year when his birthday comes around, I inadvertently find myself marking the days after his birth as well. What happened when. A timeline of trauma. July 31: born Aug 1: Eye Infection Aug 2: Oxygen desaturation levels drop, blue baby Aug 3: Still turning blue, rushed to NICU Aug 4: Intubated, ultra-sound followed by MRI Aug 5: Diagnosis. I don’t try to put myself back in that situation, it just happens. The stress, the anxiety, the feelings of drowning in a sea of unknown – they all start to creep back in my mind. I’ve come to accept it as natural and unavoidbale. I let it all wash over me, but I don’t stay there for long.

Truth be told, the weeks after Amichai’s birth weren’t much better either. That’s when my anxiety really started to kick in. I wanted to learn everything I could about CP so I started doing some initial research. I googled cerebral palsy and pediatric stroke. Big mistake. I remember coming across websites that were loaded with information, but it wasn’t information I was ready to hear or even understand. Honestly, I don’t even think I was looking for hard facts and statistics. I think what I was really searching for was a picture of a kid with CP. Maybe at park, with the sun on her face. With a smile. I needed a visual, I needed to see that it was going to be alright. The closest I came was reading one article about the challenges of teaching teenagers with CP how to drive… or if they even can drive at all. This is it? This is all they can offer me? I almost went into a full panic mode.  Amichai couldn’t even hold his head up yet and suddenly I saw him as a sixteen-year-old kid missing out on a classic rite of passage.

Breathe and shut down the google.

So much has shifted and changed since then. For the better. I have a million pictures that can document that progress. The pictures I was so desperately searching for began to fill up my phone. Amichai holding up his head. Amichai feeding himself. Amichai sitting up. Amichai crawling. Amichai laughing. I decided last year to do something with those pictures and started Amichai’s 30 for 30 birthday build up. Everyday – for 30 days leading up to his birthday -I posted a picture or video of something he can do. I did it because the kid makes me proud every single day. I did it because I wanted others to really see and understand CP. But more than anything, I did it because maybe, just maybe there was another parent out there who was in the same position I was, scouring the internet looking for something beyond the cold facts, looking for something positive – and they would see Amichai. I hoped that they would see what I needed to see a few short years ago. Just a kid – a happy, silly, kid with the sun on his face. Its going to be alright.

I did the same thing this year for his birthday, with the same intentions and hopes.  I took pictures of him brushing his teeth with his right hand, climbing up ropes at the park, riding his bike on the sidewalk…and from the community of parents that I have connected to, I know it means something – just as their own pictures offer me strength, motivation, and encouragement. (Perhaps this is where social media is at its best…) But then there was one photo I caught that made me pause. And smile.  Amichai hopped into the front seat of my car one day after we had parked. (Car off obviously!) He grabbed the steering wheel with two hands and then he took his right hand and pushed the indicator down. The boy is driving. Snap.

I was immediately transported back to that day when I had a meltdown after reading about driving and CP. I wished with everything I could have shown myself this picture then. It would have made me laugh, it would have made me wipe my tears away, it would have made me gain perspective. To be clear, while my hopes are that Amichai will one day drive – I know very well that this is no indication of that. But what made me pause, and eventually smile is simply seeing and accepting the process. I know, I know – of all people I should fully embrace the “it’s not a sprint, its a marathon” mantra.  I can literally see Amichai getting stronger every day – thank Gd. He’s doing things he wasn’t doing a year ago or even a month ago. The progress is tangible. But forward motion comes in other forms as well. Five years ago, I had to ban myself from the internet because it was too much to handle. In fact, if I could give any piece of advice to parents who are just beginning this journey it would be to impose a similar internet ban. Just take pictures – take lots of pictures. Pictures are the evidence you need to start understanding your reality and feel comfortable in it. When I started to do that, I found I could open up my browser again without breaking into a sweat.

Trust the process – that’s how we roll in Philly. Five years into this process, we are still at the very beginning. I know that where you start is not where you end up. There are miles and miles to go in between. The picture looks dramatically different when all is said and done…and even then, there are always more photos to snap.

 

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Tricks of the Trade http://www.changeperceptions.net/tricks/ Thu, 29 Mar 2018 13:19:46 +0000 http://www.changeperceptions.net/?p=166

Amichai has high muscle tone that runs down his right side – but most of it is concentrated in his hand. His thumb tends to close inward into his palm and his hand is sometimes fisted even in a resting state. What makes this even more challenging is that the muscle tone increases as Amichai attempts any activity with his right hand. So, when Amichai wants to open his hand to hold an object, he must overcome the tone firing back at him from all fronts. This makes it difficult to get a grip.

But Amichai has a trick.

Make a fist. Hold it as tightly as you can. Then take your other hand and press down with your index finger and other thumb on the bottom joint of your fisted thumb. What happened? Your fisted thumb came loose. Magic. Not really, it’s physiology – that’s just how the muscles work. Pretty cool. Early on – when Amichai was still a baby, his PT and OT gave me exercises to help open up his hand. Always start with the thumb they told me. Once you can get the thumb free, its easier to get the rest of the hand open.

But the thing is, I never taught Amichai this trick. He figured it out on his own. It was sometime last year, I was watching him try to collect some items and he needed two hands. Instinctively he took his left hand and pressed down on his right thumb – his hand opened, he placed the object in his right palm and carried on without missing a beat. I stood there a bit surprised, a bit dumbfounded, but thoroughly impressed. I would never have figured that one out on my own. I remember asking him what he did. He gave me a look that I fear I will see again in later years – a look I give still give my own parents when it seems like they have just asked me the most ridiculous question imaginable. The only thing missing was the eye roll. He stared me down and simply said – I was helping my right hand Mommy.

Right. Duh.

For over a year now, Amichai has used this trick to get his hand open. At first, his OT wasn’t bothered by it, but after giving it more thought – she decided she wasn’t so thrilled. She feels he has the capacity to open his hand without the help – he doesn’t need the trick. And truth be told, Amichai has become quite proficient at opening his right hand independently to grasp smaller or thinner objects. The fact that he can do this almost effortlessly today is directly attributed to the countless hours Amichai’s OT has spent working with him and even more importantly – her belief in him that he CAN do it. It is a gift to work with professionals who believe as deeply as I do in Amichai’s capabilities.

Amichai’s OT is top rate. I trust and follow her advice. I encourage Amichai to open his right hand without the help of his left hand as she has instructed, but honestly – and at the risk of getting lectured by her – I don’t necessarily discourage the trick. The irony is not lost on me. I’m the person who will never choose the short cut. I put my head down and just go to work. I preach that hard work will pay off. And when it comes to Amichai’s therapies, I have always made sure that the people working with him know its ok to push him. Bring it.

So why am I letting him off the hook? Because its not that he’s getting away with something – its that he’s figured a way out of the box. When our kids our stuck, we tell them to think and be inventive. We want them to be resourceful. More so, repeatedly I have heard from numerous physical and occupational therapists, that hemis (kids who are hemiplegic) are the hardest to work with – the reason being: they manage just fine. These kids have a functioning body and don’t want to be told how to hold something the right way or walk a certain way – they can figure it out with instincts and creativity…so move out their way.

What I’ve learned as a parent to one of these stubborn hemi kids, is that the real key is finding a balance between providing them with the necessary framework of therapies and then letting them adapt that framework to the real world. Understanding how to modify, revise and then modify again is an imperative lesson of life. Amichai is learning that now and it will serve him well… because in the real world, sometimes you need to be quick on your feet. Sometimes you just need to get the job done in whatever way you can. Sometimes you need a trick or two up your sleeve.

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