I've Been to Italy, I've Been to Holland

**Trigger warning. Please read with discretion.**

There is a poem written by Emily Perl Kingsley, titled "Welcome to Holland." It has made its way around many special needs circles. I have read it several times. The intent is admirable. It has been seen as an inspiration for many parents. I am not one of them. Let me preface this post by saying if you continue to read, there may be triggers. This post is for the parents and families of children with severe or traumatic injuries and disabilities.

Holland is not traumatic. In my mind, Comparing Holland to Italy is like comparing your expectations for a neurotypical child to having a different neurotypical child. Like, I was expecting to have a girl, but it turns out, I'm having a boy. Time to repaint the nursery and buy different onesies. Maybe it would be more precise to compare having a special needs child to making it to Italy, except the country has been devastated by a natural disaster, or there are riots in the streets or some kind of epidemic.

There is another essay called, "It's Not Holland." I think it is much more accurate. Instead of reaching a vacation destination, you end up in a desert. This happens without warning or explanation. I can relate to that. But the more I read these two pieces, the more I feel compelled to write about it from my own perspective.

There is a wide range of different types of special needs. In our case, David's injury was traumatic. For him and the whole family. If I was rerouted from Italy to Holland, I don't think I'd get that upset, beyond the frustration of changing flights and preparations. It would still be a vacation. I'd be excited about visiting the Rijksmuseum and eating all the glorious pancakes. It's not like they're telling me you have to go home, or your plane is gonna crash.

When doctors tell you "something's happened" to your three day old infant, you go numb. You can't hear the rest of what they are saying. As you watch the trauma unfold, and your baby hooked up to every piece of medical equipment imaginable, it is hell, not Holland. It is like being hit by a freight train and then going into hyper vigilance as you watch the monitors and learn what all the numbers and beeps mean. And each fluctuation in those numbers and beeps spikes your already exhausted adrenal system. And that is one of the reasons I feel offended every time I read that essay.

It is hell, seeing the baby you cared for while he was in your belly, with specialists saying he and his twin brother "look like a million bucks" have his life almost ripped away from him because of negligence. It is hell seeing him blue, in an incubator with tubes coming out out of his nose and mouth, taped to him. He is naked, except for a diaper, separated from his twin brother. He is in a coma. And you don't know what is going to happen next. "Just wait and see," you are told. It is hell, listening to the doctor give you med school 101 and not listening to your concerns in a makeshift basement NICU run on generators because there is a literal hurricane happening outside (Hurricane Ike). It. Is not. Holland. At this point, I can maybe relate to the desert, but it's more like hell.

It is hell coming home to the place you have prepared for your new child, and having to rearrange it for the NICU equipment that just got dropped off with a five minute explanation. It is a place you didn't expect, but it sure as hell ain't Holland.

If It was Holland, I'd come home with a healthy baby, and he'd develop and walk and coo and eventually talk and play with his brother. But it's not Holland. It's trip after trip to the medical center. It's disappointing news from neurologists and a plethora of other specialists. It's a "cover your ass" biopsy to make sure the medical mistake wasn't "genetic." It's a feeding tube. It's a tracheostomy. It's therapy after therapy. It's RSV, which is definitely not Holland. RSV is not even a desert. For us it was a full on destruction zone, with screaming and spewing blood and struggling for hours and hours through the night, on the verge of death. Yeah, that's right, DEATH. I'm not exaggerating. Doesn't sound like Holland to me.

But you know what? David survived all this. He is still here. He may not be reaching prescribed milestones, but he is here. He is intelligent and immensely strong. And he is loved tremendously.

I have been to Italy. And I have been to Holland too. Literally. They are amazing and beautiful places. The place that traumatic brain injury takes you to is not beautiful and it is not amazing. It is not fun. It tests you and makes you stronger and it makes you cry and lose sleep. It is isolating, like the desert. You know what is beautiful and amazing? That my kid is a survivor. That he almost died twice and he's still here and he is making progress. He is learning. He is doing new things. Maybe not walking and talking and eating, but every new thing that he does is a MAJOR accomplishment.

It has gotten better since those first few years. But it still isn't Holland. It is a place of destruction that is being rebuilt the best it can by our little family. It is exhausting, and maddening at times. But we are doing it. As we do, we meet others who are rebuilding their own places.

I have been to Italy. I have been to Holland. I have also been through hell.




Note: It should be specified that "Welcome to Holland" was written by a  mother of a child with Down Syndrome. It is not my intent to detract from the inspiration parents may find in reading it. There is no poem that I know of for traumatic brain injury or NICU horrors, and "Holland" gets shared too often in the wrong context. 

Joyful Connection

The week has flown by. It feels like we just got to New York and now we are in New Jersey to see Dr. Roy Nuzzo. After conversations suggesting I bring David to see him, and hearing words like "genius" and "artist," I researched him online. Usually, when I research a doctor online, I get the standard medical sites with stats and reviews. This doctor actually has his own website. And like none I've ever seen. Instead of trying to measure stats, I can get on there and learn. There are images and clearly articulated explanations of procedures.

The expressiveness conveyed in the many pages of the website are astounding. Learning happens just by perusing the site. I can't wait to meet this doctor in person and I can't wait for him to see David! I have not read everything on there, but I started with things that I felt were most pertinent to David. This quote is spot on, and full of wit: "There are no right angles or squares in biology. Sorry." As I read more, I come up with questions and feel more educated. What a way to establish a quality relationship with patients.

Speaking of quality, at the suggestion of Marcy, we took David to see Dr. Steele, a highly esteemed pediatric opthamologist. Quite serendipitously, I was able to get an appointment for David in between his movement lessons because there was a cancellation. This was David's first eye doctor appointment in a long time.  After Dr. Steele examined David, we sat down and listened. The big news is: David can SEE. I know he has cortical visual impairment. Dr. Steele said the CVI is not serious. So I asked him wheat he meant by "see."  I asked if he thought David could see font. His answer was, yes, probably about a 20 point font. I cried. The implications of this are tremendous. This means READING. David loves to be read to. Our wonderful nanny reads chapter book after chapter book to him. He can't get enough. Since Dr. Steele gave us this information,  I've started thinking about ways that David can start reading on his own. How empowering is that? 

This means he can see our faces. I've often wondered how much David sees when I get on his level and talk to him. Now I imagine all the detail he sees and I use it to express things conversationally. This whole time, I've been convinced that he has been picking up on peoples emotions visually. This news was a huge affirmation. Having an idea of what David can see gives me the power to guide him into movement. 

That happened in David's lessons with Marcy. David had to turn his head to see something. In other words, he had to organize his body to go there. Not juts to roll to his side, but to get his whole body to see something. Or do something. Like give a high five. Marcy had David giving high fives and low fives. The variation thrilled David. He did some repeated high fives and started smiling and making exclamatory noise. 

When we were leaving, as I was talking to Marcy, I caught a glimpse of David and myself in the mirror. The feeling of holding him was different. We were both more comfortable. I could feel him doing less work. He had his elbow bent and his hand on my chest, leaning his head against me. I think he was looking in the mirror too. I can see him coming home to himself. In that moment, we got what we missed when he was a baby and connections were taken away. We got connected again. David with his neurological connections, and from there, our connection. It radiates and it keeps growing.

I'm happy and thankful that our whole family is on this trip. Being in close proximity has been a gift. David is experiencing wonderful changes from his lessons with Marcy, we received fantastic news from Dr. Steele, and we are all here together experiencing it. Logging off of our regular schedules has brought us closer. It makes us think about what we are going to do next instead of hopping on our personal treadmills of habit or duty. There is more laughter and more communication which compels us to connect.

We spent Father's Day today as a family. We went to the mall, to the park, and out to eat. Times like this are not taken for granted in this family because it requires much planning or plain luck for it to happen. And we celebrated all together. I am tremendously thankful for Jeremy. The boys are blessed with a loving, dedicated, intelligent, funny dad. He is an amazing role model and it moves me to see him with the boys. This week was full of bonding time with Dad. Unlike solo trips I have taken with David, I have been privileged to see him interact with Jeremy in new ways as he learns more from his movement lessons. I am enjoying watching Donnie and him hanging out together and noticing how many ways Donnie is so much like his dad. This trip isn't even over yet, and it has been full of growth and connection.

Happy Father's Day, Jeremy! 

Eloquence

I talked about safety and connection in my last post. If ever there was an individual that embodied what I'm talking about in regard to safety, it's Marcy. Magic happens when David is on her table. It is eloquence. And fun. I'm not sure I've ever thought of those two things at once, but that is what happens.

Let me go back to the first visit we had with Marcy in August 2012. And I say we, not just David, because it really involves everyone around him.  We are all witnessing neurological connections being made. With a special needs child, something that seems tiny can be a big deal. This visit was before I started training to become an ABM practitioner, and the thing that struck me was the communication happening between David and Marcy. I listened to her tell David the things he was doing and the movements he was making that were necessary for rolling, sitting, or many potential other movements.

When I laid him down on her table that August, he immediately wanted to arch, roll, go! He was fervent about it. And Marcy talked to him, and let him know that she would give him a signal for when it was time for him to do what he was trying to do. Then she continued to notice things about David. I didn't know what she was seeing, but I knew that David was changing because I witnessed it. This was the first time he touched his feet and hands together. He had the option to turn his head toward the person we wanted to pick him up at the end of the lesson. Awareness was happening. Anat describes it in "Kids Beyond Limits" as "awaring." Not only was David awaring, so was I.

Since then, there has been communication between David and myself about suctioning the trach. I will say where I am going to suction (mouth, nose, or trach) before I do it. When he starts to swing his arms or arch, I now have ways to let him know to slow down. I tell him "easy arms," or "easy legs" and gently put my hands on his thighs to bring his attention there.

I am thrilled that we are here again. I imagine all the neurological connections that have been made since his first movement lesson and how they continue to multiply. The language that occurs is fascinating. And David is listening.  His eyes are alert, and he is responding vocally and physically. I imagine what it is like to be him and feel what he feels. If you can walk and you can talk, and if you can go where you want to and look where you want, it is easy to not consider these things regularly. But witnessing David on the table reminds me to notice them. The more I notice about David, the more it broadens his potential because I can bring these things to his attention. Marcy has a gift of noticing.

For example, she brought David's elbows to his attention. Not only is he becoming aware of them, so am I. Usually, David's arms are stiff and straight. Occasionally he will bend them. Marcy created an opportunity for enthusiasm by telling David he was really good at hiding his elbows. When his arms are  straight, the elbows are hiding. When he bends his arm, we can see them.

As we go about the city, I take moments to play elbow peek-a-boo with David. Guess what. He is bending his elbows more. Now he is playing with them and learning new things to do with them. Like elbow his brother, or bang on the floor. Or push his hand onto a surface. Or put his arm on his mouth. Or push himself up when I am holding him.

I have been using the word "new" to describe the things that David is doing. There is a newness to David that can also be seen in his pelvis. According to Merriam-Webster dictionary, one of the definitions of new is "recently born, built, or created." Since David's injury, not much has been happening in regard to his lower body. Marcy is showing David how to create his own movement.  He moved his pelvis intentionally during one of his first lessons this week. Marcy held his arm as he came to his side and gently guided his pelvis, bringing his awareness to it and letting him know that he could use it--move it--to roll to his side or to roll from his side to his back.

When I picked David up off the table after a lesson, I felt him intentionally roll his pelvis toward me. He knew where he was going and how to get there. David notices. And then he can DO it. He is doing it! He is rolling. He  is moving his eyes. He is smiling more and more. He is holding his head in a neutral position more often instead of turned to the left and tilted back. Today, Marcy was giving David the feeling of standing. Doctors and therapists have recommended putting David in a stander and I have never done it. The reason is, I don't feel the restraint of a standing contraption is worth the weight-bearing input that he'd get out of it. So much of him would be limited. In a movement lesson, like the one he had with Marcy this afternoon, he got a superb quality of weight-bearing information. This quality came from a practitioner who is able to communicate to David an increasingly refined differentiation. There is a pelvis. There are legs. Two of them! He is beginning to feel different ways that weight can be transferred through them. And because his whole body is free when this is happening, he can feel safe. He can put his legs in new positions and create his own movement. Before it was time to go today, I stood up and took a look at him from another angle. I can't find words to describe it. I just know what I felt. I saw David. I saw him being David instead of being stuck, limited.


 There are so many things I want to ask him. I do ask him some things, but I also try to give him space to explore.

Let me tell you, David is an explorer. He listens. He tries different things. He explores in subtle ways and not so subtle ways and learns from it. The more he gets the subtlety, the more differentiation he experiences. The ABM practitioner guides the exploration. I'm so thankful that David has Marcy as one of his guides.

I see my son doing these things with the utmost sense of newness and excitement, and I get all emotional. It's intense. And it is liberating.

Safe

What if I told you that you are safe? You don't have to perform. You don't have to worry. You don't have to fight. You don't have to do anything except be you?

Maybe lots of thought flow in. Or you think of all the things you need to remember. Or a certain way you need to be. All the things you need to do. What if this? What if that?

Leave it.

This is the biggest lesson I've learned at the halfway point of my ABM training. These are the thoughts, or rather, noise, that is generally going on at a steady pace in my mind that I recognize and put aside. When the noise is gone, I don't need permission. I don't need someone telling me what I need to do or what is expected. My fears of doing something wrong go somewhere else and I am present.

There is no competition, not even with myself. I can just be and enjoy the freedom to move, explore, and learn. It is exhilarating. I can see and hear and feel things around me and truly connect.

Connection is a huge thing. We need it and frankly, I don't think we get enough. I could go into all the reasons why, like too much dependence on technology, physical separation, pretense. Our present culture can easily dissolve connection. But that is a digression. Back to connecting. I realized when I got home from training how much I miscalculated eye contact. I thought I was making eye contact, but I was really making face contact. Noticing this difference has allowed conversation to take on a new dimension. It's not just a thing that happens. It has become deep and powerful.

This feeling of safety makes me more connected to the things I am doing. There are daily activities, creative pursuits, and the time I spend with my sons. Being more present with them and what we are doing makes the whole experience richer, more colorful. All of our personalities become bigger and more vibrant. My boys are still at a young age and I am happy that I can thoroughly appreciate it all.

With the trauma that happened when David was injured, and the scary new world our family was thrown into, I wanted to make sure David was safe. I also wanted him to "get better." I wanted the brain injury to go away. I wanted to magically wake up and find my son rolling and talking and enjoying all the abilities that were taken from him. We are five years into the wake of it all. In retrospect, I may have tried too hard to help him. There was too much expectation and not enough safety. I think that is one of the reasons we were drawn to ABM.

All the times I've observed David on the table during a movement lesson, I wonder what is happening. It inspired me to become an Anat Baniel Method Practitioner. I wanted to know what was occurring that spurred so much change in him. What is the practitioner doing that lights up his brain? Connecting. David feels safe on the table and free to move and wonder. 

Safe means accessible. David is able to access things within himself and change. I am doing the same in my training. With this realization comes responsibility. Namely, to share the experience of feeling safe.  It's a muscle I need to work. It is newly discovered and in that sense, I'm kind of like a baby, exploring. 

I'm not always there. But when I'm in this place, magic happens. Conversations happen. Dreams are more vivid and complex.  People show up in the most serendipitous ways. Things change.

Support

When I started this blog, the main purpose was to keep friends and family updated. It still is, but it has evolved. I decided that what I write here needs to edify, and it needs to have a purpose. The purpose of this post is to talk about support. 

I am truly thankful for the people in my life who have supported us during traumatic and tough times. I am thankful for encouraging words. I don't want to sound ungrateful, but I don't know of any other way to put this: the day-to-day can really take a toll too. It takes a great amount of planning to get the help I need with childcare or just to take a rest. While I was in California, I put thought into how I would make our daily life more efficient. How can I simplify things and also get more help?  The sad thing is, it takes money. It feels like the planets have to align. It feels like we have to scramble weeks or months in advance if we need to go somewhere. 

In my endeavor to find the help I need, things have gotten me down. I'm thankful we can afford to have a nanny, and we can afford to pay for housekeeping. Currently, we are working on getting a nursing service. But what if we were not able to do these things? There are many families with special needs children and adults who are struggling. My heart goes out to them.

I am thankful for Jeremy. I am thankful that he provides for our family, even though it requires travel and considerable time being away. I am thankful that he is a loving father and the best role model ever for our boys. I am thankful that he supports me emotionally. He is my other half. And also, he gets the planets aligned.

I am thankful for acts of kindness--really, those are the best! Especially regarding the day-to-day. I'm thankful for my dear friend Katie, with a special needs child of her own, who helps me prepare food for David's blends and offers to do my laundry and gets me out of the house when I need a break (you ROCK!). I am thankful for the friend who showed up unannounced with Whataburger on a particularly rough day when I had no idea how I was going to make it through lunch by myself with the boys. I am thankful for the friend who took Donnie to the zoo and an Easter egg hunt. I am thankful for everyone who took their time to come help us when we were doing patterning with David. I am thankful for the friend who sent her son to come help us when we were doing David's intensive program. All of you, you know who you are and I can't say thanks enough!

I am thankful for people who are not reluctant to learn to suction David's trach or learn to tube feed him. That stuff really helps. Those things let me know that someone gives a damn because they might be getting out of their comfort zone and they are really making an effort. David notices it too. I am thankful for people who show up to help on their own accord. 

It is pretty blatant that we need help and support when a hospital stay is involved, or something serious is going on. However, the isolation when things are just moving along really hurts. Maybe it is our culture. We have to work, and we have to make money, we have to be a million different places. We are separated from so many people we know by distance. And that is the way it is. Does it have to be this way? 

What if there were more people who got out of their comfort zone and volunteered to help families of special needs individuals? What if more people took a little extra time to do something helpful for others?  What if we reached out to each other more? What if we just slowed down? What if our whole society woke up one day and realized that the crazy pace we have gotten ourselves into is detrimental and did something to change it? It is not going to change overnight. But even the smallest act can start moving things in a healthy direction. 

A Sense of "I"

"Is this the mind or is this the body?" Anat has been asking us this during training.

Today I have been feeling seriously spacey. The song "Space Oddity" comes to mind because I have been really moving. I have been moving myself--my body, my brain....and shifting around and exploring. I am going to places I have never been before. For example, I have been getting my body into positions it has never experienced. I have been doing it also with my mind. All of it has caused me to rethink what learning really is.

Yesterday, during a movement lesson I lost the concept of time. I didn't just lose track of time. It was an abstract experience that I can't quite put into words. There were sensations that cannot be categorized into any of the five senses that I became aware of. Almost like deja vu, but instead of it randomly occurring, I got there somehow by movement. I knew who I was both as an adult and as a child. I knew myself as who I was and where I was physically, but also I knew myself via the experiences that I've used to make sense of my world and the self I have constructed to navigate it.

So, learning. I'm trying to formulate words that express what I am experiencing and what I am starting to know. Instead of using what I already know to perform a certain way, I'm trying to describe something I have not known before but have recently encountered.

There is a magic that happens when a young child does something for the first time.  That kid wants to do that thing over and over again and is so enthused about it that they have to say, "Mom look! Mom look! Look, Mom, watch this!" They are in that magic moment. They are not performing or trying to meet an expectation. They are learning.


"And I'm floating in the most peculiar way. And the stars look very different today." --David Bowie

Free To Move About

Movement takes intention. When movement happens, an amazing process begins. The former is a statement. The latter is how I refer to what I am learning right now. Segment two of Anat Baniel's training for practitioners is happening right now and I am thankful to be a part of it.

So, Anat told us today that movement takes intention. According to Merriam-Webter's Dictionary, intention is: "the thing that you plan to do or achieve: an aim or purpose." Sometimes during movement lessons, I'm not exactly sure what I'm planning to do. I realized, watching Anat demonstrate on a fellow student, that permission is a big thing. I need to give myself permission to do things. I need it to approximate where my limbs need to be to be able to do certain things. Let me repeat, I needed to give myself permission. No one else could give me that. They couldn't tell me exactly what I needed to do to get there. It was up to me to do it.

Permission has become, at least for me, almost subconscious. I don't want to wax political, but feel like a large part of this is how we are educated. Is this for a grade? In school I was overly concerned about getting an A. Somewhere in life I learned that this was a necessity, and this is unavoidable. As children, permission from our caregivers is necessary for our safety and well-being. But there are other times when it is superfluous. This is getting rid of the noise.

So yesterday, I had to give myself permission to turn my head so I could get my arm to the floor on the opposite side of my body. It took lots of little tiny permissions from myself to get there. I had to eliminate noise little by little.

And I had no idea before this that I needed any permission. Today, Anat used me in one of her demonstrations. Before I could even give myself permission to get my leg to where I was intending it to go, it was going there. It was going way past "there" and other parts of me were moving too. And I had no idea they were not moving before.

I had no idea what type of process was happening after I left segment one of training either. When I came home I was integrated. My brain was organized. I spent time keeping it that way. Then I got caught up in travels, and life in general. When we are not using intention, disintegration happens. Well, it totally did.

Anat has been talking about how the natural tendency is to move toward the baseline. This comes a relief to hear. As time progressed between segments, I got back into habits that let the noise back in. As the habituation set in, I found myself in a dark place. This was shortly after my last post. Reading the news, mulling over the Stapleton story, and falling back into pushing myself too hard at home landed me in a place where I was face to face with darkness. It was the manifestation of many things left unexamined and unprocessed. All of it felt tangled into a giant, heavy ball. I had disintegrated. Without giving it a word, I faced it. The word was permission. Freedom.

Now, back in training, I am reintegrating. Completely unexpected. For some reason I had this idea in my head that this process was going to be linear.

This integrate, disintegrate, reintegrate process is part of the healing process not just in terms of physical neurology, but emotional trauma too. I have wrestled with grief, but I think in the past couple of weeks I faced it. It wasn't of my own volition either. I came home from segment one enthused, excited, and genuinely in awe of everything around me. Much of the noise had been eliminated and I was more organized neurologically.  Something in me during the period of newness in reorganization had started to happen. I began to really grieve, I think.

Emotions started coming from everywhere. Sometimes I could slow down and figure out what to do. At other times, I didn't. But I knew I needed to start untangling that giant messy ball of thread. So I did, thinking all the threads would be in straight lines. But as reintegration happens, I've noticed that they are more organic. Some are curving. Some are little zigzags, some are seemingly random lines. Regardless, they are not a ball now, but taking different paths.

Progress feels like a fractal. It is going back, regressing, and then making progress. Because without that disintegration, the progress would be linear. It would be just a line. Instead, there are patterns and shape to the process which creates beautiful shapes. It is organic....and it takes effort, and is scary and new and rewarding and beautiful.

The important thing is learning to do this more and more. All I have to do is move.