ABM in New York

Warning, this is going to be a long one...

Is there a higher or more powerful word to use than “proud?” If so, I need to use it to describe how I’m feeling today. I’m writing this from our hotel room in New York while Lucas is napping, here for a weekend series ABM appointments with Marcy (one of the highest level practitioners and trainers for ABM specializing in special needs children). We arrived on Friday morning and have had three of our six appointments so far. I am overwhelmed with excitement, with hope, and emotion. I’ve always found it interesting in this journey how these doses of hope come at the most needed of times. Call it divine intervention, call it life lessons, call it karma… whatever the reason, I’m so grateful when it happens, like a needed embrace that reassures me that everything is going to be ok. It gives me faith that we are making the right decisions for him. There isn’t a day that goes by that I don’t second guess myself in some way, it is a such a huge responsibility making decisions for him that could make the difference in him being a “part of life” or “living life.”

I’ll be honest, building up to this weekend, I’ve been feeling restless with Lucas’ motor progress (or lack thereof). We made a leap of faith and large financial investment into the ABM thing six months ago, and although we are seeing a lot of positive changes in him, I’ve become impatient with not seeing him hit any major milestones. Its been frustrating that at two years old he’s still not sitting up, doesn’t want to be on his belly at all, and is nowhere near crawling. And I can’t describe the dagger to watch other children much younger than him walking around (and now even micro-preemies that have passed him). Just last week I thought to myself, I need to start coming to terms with the fact that he may be in a wheelchair. Everyone told us that he would have CP, maybe I didn’t want to listen or accept what that meant. After all, there is such a fine line between being positive and believing in something, and being in denial. Maybe I’ve just been in denial?

I’ve always known we have to trust this process, but sometimes its easier said than done. Let me be clear though… I have the utmost respect and admiration for Carla (his ABM therapist in VA) and this method, and she’s one of the few people that we work with that I truly trust. I know that she is creating the building blocks for him to hit the big milestones, and we have absolutely seen some very good things. But it is a long process and its not easy to be patient (especially when you have doctors and therapists that are skeptical of a method they know nothing about). Its like the argument of natural medicine versus traditional western medicine… they’re both right, it depends on what you believe is best for your situation. And with everything that we know about this method and why traditional PT approaches fail, we do believe that this is the right thing and why we continue to press forward. Patience and trust are not always easy to practice.

**Ok, so what’s been happening here… Marcy is wonderful! Carla told me this week that she would only give Marcy the basic background on Lucas, and let her make her own assessment on where he is and where he needs to go. In the first session yesterday, she said several times that she sees so much potential in him. Lucas was instantly comfortable with her and charmed her within the first few minutes with his tricks and constant giggles, and verbalization of a hundred ways to say, “hieeee!” He’d get her laughing and she’d look at Bran and I shaking her head saying, “he is something else!” She was impressed with his language comprehension and pointed out that this level of comprehension and his sense of humor are true signs of intelligence and potential. She said, “I can tell there is so much going on in there.” (I have to put out a disclaimer again that I’m not saying “my kid is so smart.” I know every parent can think at times that their kid is the brightest and most talented. That is not what I’m trying to communicate. Its just an incredibly hopeful thing to hear when your child is missing 20% of his brain and the remaining healthy tissue attacked by meningitis. Showing these signs of learning capabilities and intelligence is a HUGE thing (especially when you’ve witnessed all that we have while sitting in the waiting room of the Children's Neurology Clinic and how brain injuries usually manifest.)

She was particularly impressed with how well he was transitioning from lying to sitting up (with her help) and how quickly he picked up some of the techniques she introduced. Then she said some magic words, “I think he’ll be sitting up within the week.” WHAT?! Bran and I were thinking the exact same thing…I thought to myself, How incredible! But don't your hopes up for this week. And Bran told me afterwards he was thinking, That would be incredible... but ANGIE, please don’t get your hopes up for this week. Ha. He knows me too well.

Not that I’m holding her to “next week,” but this is awesome… a) there are some that were not convinced he’d be able to sit unassisted, and b) sitting is a major first step to the next pieces that should follow. With ABM, they do not want children sitting before they can transition themselves in and out of it (they don’t want a child in any position that they can’t get in and out of themselves). If we had stuck to our old PT approach last year, he would have been sitting a long time ago (he could sit for several seconds in November prior to starting) – but very rigidly, with no movement of his ribs or back, or ability to get in or out of it. They were forcing him to sit and asking us to stretch and push his knees down to the floor (which was doing nothing but make him mad, ultimately). She explained to us, kids that learn to sit up without all the building blocks end up using the wrong muscles to do it… they use their stomach flexors, which is not what you are supposed to use to sit. You need your back muscles and your entire spinal column to work together to hold in a sit. If you learn to sit by only tightening your stomach muscles, then the next milestone becomes nearly impossible, or not done correctly (i.e., crawling or walking). The same holds true about being forced to stand in a standing device… in a stander, kids do not develop the right muscles in order to help them stand unassisted – again they develop the stomach flexors, which is not the right muscle group for standing. She said forcing kids into a stander is a sure way to give a kid scoliosis (reminder—that our old therapist last fall recommended that Lucas should be in one, because he was of “standing age”). There is a reason that we all learn to sit and crawl before we walk, not just muscular, but because of the brain’s necessity to learn the movement for building on. I know a few kids from my preemie group that through traditional PT got to walking quite quickly (which is great), but now are in grade school and unable to do things like jump or swim that require back movement and coordination. This is the result of skipping building blocks.

Here’s a picture of a stander if you’ve never seen one. Kids are strapped into it. Disclaimer: weight bearing is important for bone development, so I’m not saying standers don’t have a purpose in the right situation (especially for children with severe neurological conditions where walking is not an option). However, because Lucas can control his legs to do specific ABM exercises and movements, he is developing the hip sockets without forcing him into a stander and ultimately damaging his immature back in the process.

I always wonder how many children are wheelchair-bound today because their brains were never given the opportunity to learn the proper way to use the body in the beginning? Everything in our motor development is built upon small pieces…when you skip things, you cannot properly build on what is necessary. Extremely premature children (and especially with brain injuries) often skip these building blocks. Typical babies are moving constantly in the first several months, and the brain is mapping itself at an extremely rapid pace. Brain injured children can’t map and organize movements, and therefore, the brain even recognize what the body can do. Therefore, it remains still, and rigid. This is especially true of Lucas’ left arm… if left alone, it would eventually become completely immobile and stiff (it was already becoming quite stiff this past year). ABM helps the brain learn these early movements and transitions, as building blocks to make the big milestones possible.

A few other things she said that we thought were interesting… she was working on his mobility in the front part of his legs and hips and commented that there wasn’t much range of motion. She said this is why he hates being on his belly. When there is little flexibility to pull the legs back, you can’t easily lift your head and upper body. No one has ever pointed this out before, and it makes total sense. Then consider that he hasn’t wanted to do any weight bearing on his left arm, of course he’s not going to want to stay on his belly. So her goal is to get the legs more fluid, and the tummy will come naturally. She showed us some adaptive techniques for tummy play to make it more comfortable for him (and the only way he should be on his belly until the rest of his body is ready).

So we had two sessions yesterday and one this morning. She worked a lot on his left arm through play and games in the second session yesterday. Lucas is already showing changes today. When he sat up on her table, I swear he grew two inches. We are so used to seeing his spine slouched over, and today his spine was standing tall. His legs were more legs flexible as he laid on his belly and his left arm is remarkably more fluid. As he laid in his adaptive tummy play as she worked on his legs, he supported himself with both arms out to reach for the toy (typically the left is pulled inward). She said as we left today, “I couldn’t possibly ask for him to be responding any better. He is learning very quickly.”

I realize this may all sound a little hokey if this is the first time hearing how the brain learns and responds, but trust me when I say that this all makes sense after all the research and education we’ve received on the brain this past year. I am reading a book right now that Carla gave me called, The Brain That Changes Itself, a collection of true stories about people that have overcome brain injuries due to its never-ending plasticity and ability to utilize and map other areas. Its truly fascinating.

A couple quick interesting things about Marcy… she is also a voice teacher, which led her to ABM therapy many years ago due to its focus on movement in the torso and vocal benefits. She dedicates most of her time to traveling for ABM training and her private practice for children, but still works occasionally with Broadway and Opera singers. She got John Lithgow ready for his Broadway work on “Dirty Rotten Scoundrels,” and has done a lot of work with Carol Kane. Pretty cool. Yesterday we talked about Lucas’ speech and how he doesn’t articulate some of his vowels, like “ohhh" coming out “uhhh”. She said it has everything to do with the mobility in his chest. It all works together. As this improves, so will his articulation. She showed us some techniques to help him articulate "oh", and he was giving it a good try by the end of the session. We told her about Lucas hearing Spanish all day from Mirna and how he comprehends everything in both languages. She thinks this is great, and told us what we’ve heard before… that kids that learn multiple languages at this age will be later in expressive language (but its worth the wait because of all that they are learning). Go figure! So much for the speech therapist from last week!

Marcy shared a couple of inspirational stories with us today… she works with a little girl that had to have the entire right hemisphere of her brain removed due to seizures. She had to get her brain to remap itself to not only recognize her entire left side, but to use it functionally. This little girl can walk today! She works with another little boy who has a genetic disorder, missing a chromosome. Hardly any child with this disorder ever walks, and in fact the child’s mother went to a fundraiser for this disorder recently, and almost all the children were in wheelchairs. We met this adorable 4 year old today, Sebastian, while he was walking out of her office, and he stopped to say hello to Lucas. Amazing… absolutely amazing!

I told Bran as I sat down to write this update that I felt that I could write for hours if I dumped out everything that was in my head after the last 24 hours. I am so full of hope and emotion, I can hardly get it all out. Today I feel like one of the luckiest people in the world, that I get to experience being a mother like this. Sure there are days that I get sad and down that our life with Lucas is harder or non-traditional… but then I realize that there is only a select group of us that get to witness these kinds of miracles from the front row. He’s our boy, and we get to feel this amazing sense of pride and intense rush of admiration. I can’t think of anything else in life that could be more inspiring.

We’re off to our next appointment, and a walk afterwards in Central Park a few blocks away. I just love NYC and the energy here! And Bran confirmed that he does fit right in with the driving!

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Because its so hard to articulate how ABM works, I thought I'd include a description from their website. (I always promised to tell more about it in previous postings). This method is not just used for the brain injured, but for other neurological conditions and learning disabilities, as well as with healthy adults for various goals.

Where in traditional therapies there is great emphasis on trying to get the child to do what it is supposed to be doing based on his or her age, With the ABM a very different approach is taken. Rather than try to fix the problem directly by focusing on the child’s
limitations, be it stretching a short tight muscle, practicing reading over and over again, or telling the child repeatedly how to relate to others, the focus is shifted to where the solutions actually lie – with the brain.

Everything we see a healthy child do is an end result of a complex process of differentiation in the brain that allows it to form new connections and new patterns. All the experiences the child has, be it her own initial random movements or all that is done with her by those caring for her, are used by her brain as information with which to develop and grow. When there is a problem like a stroke, autism, cerebral palsy or a genetic disorder, this spontaneous process of differentiation and formation of new patterns in the brain is interfered with and the child manifests a host of limitations. Most therapy approaches attempt to make the child do what it should be doing according to his or her age and expected developmental stage. However, forcing movement on a spastic arm, stretching a short tight muscle, or placing a child that cannot sit in the sitting position with the hopes that somehow he or she will get strong enough to do it, normally produces little of the desired outcomes. It is because the brain is unable to transform the stimulation into information with which to create new patterns that are necessary to bring about the desired changes. The ABM focuses on helping the brain do its job better. It helps the brain right itself and regain its ability to powerfully and consistently create new patterns and successful solutions.

Working on his legs and back

Lucas thinks most things are a funny gameHere's the very cool building where our appointments were, "The Ansonia." This was home to Babe Ruth during the 1932 World Series, when he famously called "The Shot."Chilling out with Dad between appointments Day Two... Working on getting in and out of sitting

...And playing a game in between all that work!