Coping with Hardships

We have all heard the saying “Misery loves Company.”  I never thought about this saying much until entering the world of Special Needs and all the forums and networking groups I came apart of.  There are some days when life is just hard and you get angry and sad and the only thing you truly need is someone who completely understands so that you don’t feel so alone anymore.  Family and friends are always there but there are just those times when you want to shield those closest to you from seeing your pain.  The last thing you want is everyone thinking you are depressed and sad all the time because in reality you are not…you just have moments and these moments can some time’s happen in clusters.  When my son in admitted into the hospital and hooked up to monitors I hop onto my networking sites and read about other families experiences to gain a better control of my current situation.  It helps me to know that others were in my same position and now they are past it…and I will be too.  The same goes for our really elated happy days when my son might do something he hasn’t done in weeks or months.  When I am giggling and smiling I want be surrounded by others successes because it is like piling good onto the good and making mountains of happiness that lift my spirits and give me energy to actually do the things I have been putting on the back burners because I was too sad or exhausted to do them before. 

My life changes when we have a good period of time where the good outweighs the bad. It is during these times when I feel like I am living life again and not just trying to survive it.  As the time has passed since we were first given the news about our son I have found it easier and easier to hold onto the positive things.  This has only been the case because I have had to retrain my brain to think of the positive in any given situation instead of being consumed by the negative of the moment.  If my son has a negative reaction to a medication or therapy technique that may even send us to the emergency room I try to stay focused on the fact that we now know my son has a reaction to that and for the rest of his life we know what not to do or what to do if it happens again.  It is like being handed a piece to his life puzzle to let us know in detail what to expect.  We would have never got this puzzle piece had we not have had to experience that moment of fear or sadness.  We could have easily dwelled on the fact that we have another hospital wrist band to add to our collection and let it get the best of us.  We could have let it put us on edge and totally consume us and compromise our relationship with each other and those around us.  Or we could choose to accept it happened, learn how to cope with it, gain a new understanding about it, find the positive in it, and then move forward focusing on the fact that we are once again moving forward…a new day…a new moment.  

Couldn't the same be said for anyone who might be struggling to cope with a hardship?  Everyone has good and bad days and this post has nothing to do with being a parent of a special needs child, for that is only my personal experience I am sharing. Depression, anxiety, bereavement, and panic can alter who you are and the things you would be doing if your energy wasn't totally exhausted from these things. The purpose of this post is to share with you some personal as well as professional thoughts on how and why we each need to learn how to find new coping mechanisms to help us through this journey we call life.  Life is so much better having a true smile on our face rather than one hiding a deep sadness buried inside. 

I have a personal thought that there is nothing wrong with any feeling anyone has over anything.  “Feelings” are feelings plain and simple and nobody can control what they are feeling because it just happens without much warning.  "Emotion" on the other hand can be spun out of control depending on the many factors of any given day (what you may have had to eat or watched on tv or lack of sleep or pms to name a few.)  Do not label your day based on what your emotion is doing to your feeling because that is exactly what it is E-Motion (erratic motion in my view).  Your feelings on the other had are justifiable so if you are feeling sad let yourself feel sad but do not let the motion of your day spiral you downward to effect and take over other feelings you have during the same day over any other topic.  A sad moment will feel much worse if it happened right after you just got done watching a sad movie.  Same can be said of a happy moment after hearing your child giggle.  Any one person can feel multiple feelings in the same day.  We get carried away when we do not acknowledge this and think that if we feel happy we should stay happy or if we feel angry we should stay angry.  It’s not how it works I have learned.  You can feel pure devastation and pure happiness in the same hour.  You can cry during a happy song because it may have stirred up a memory, just as you can laugh during a tragic play because you find the plot to be amusing.You are human therefore you get to feel everything in life.  Accept the fact that you get to feel things and it is perfectly fine and normal.  Then choose to feel as much as you can in every moment and you will be surprised on how many positive feeling you experience, yet ignore, because your negative feelings get swept up in emotion and seem larger and all consuming.   

The Anatomy behind our Feelings 

I just attended a meeting where a psychiatrist taught all about depression and anxiety.  What I learned I found to be extremely beneficial to the situation that I have found myself to be in after learning I have a special needs child. There are many positive and up lifting moments in the life of the special needs but there are many that involve depressing and sad situations and circumstances as well.  What I found to be the most interesting fact is that bereavement is something entirely different than depression and was a whole new concept for me.  When a person is depressed or struggles from anxiety it has to be a long term occurrence to truly get a diagnosis.  It takes over many aspects of their life all at once and continues to do so for an extended period of time.  It is hard to go about the day doing even the most mundane of tasks.  Bereavement on the other hand is much like feeling depressed yet you are able to function at a slightly higher level and go about doing the things you have always done just with less energy or desire because you are hit with moments of sadness.  It’s a fine line that up until now I didn’t understand.  To admit to yourself that you are depressed makes some feel that much more depressed.  A clinical or self-diagnosis being stamped onto your psyche and restructuring the way you go about your day and live your life.  A word that to some comes with a heavy burden or bucket loads of guilt and shame.  What if I was to tell you that maybe you are not depressed.  Maybe what you are really experiencing is just the overwhelming feeling of loss mixed with an all-consuming feeling of responsibility (aka…Bereavement).  Does a change of word make you feel any different?  To many it doesn’t but to some it might.  Understanding the basic methodology and anatomy that makes up such a huge part of my everyday experiences actually helped me and maybe it might help you too.    

I learned that there are two contributing parts of the brain that play a balancing actin controlling how and what we are feeling, the frontal cortex of the brain as well as the Amygdala.  The frontal cortex is the area that controls such human processes as Attention, Concentration, Reasoning, Social Behavior, and Emotion Regulation.  The Amygdala controls Negative Emotion, Negative attention, Perception, Emotional Memory, and the Fight or Flight feeling.  When the frontal cortex is winning your brains balancing act you will feel like you might have a better control or understanding on the situation.  You will feel like you can think clearer and cope better with whatever situation or feeling you might be having.  When the Amygdala takes over you will experience surges of negative feelings like anger, frustration, confusion, or irritation.  My theory is that the frontal cortex is where your feeling might have come from but it is the emotion that lives in your Amygdala that will explain how you might react to your feeling on whatever situation you are facing.  

The Amygdala, like many other parts of the brain, is pliable and can learn to function certain ways based on continuous re-occurrence of the same signals or function. It was explained to me in my meeting that a dog has a very actively functioning Amygdala which is why they might bark at the mailman every day.  Their basic fight or flight senses are intensified because their Amygdala is functioning on a high level and winning the balancing act over their frontal cortex.   One week the dog might bark as soon as the mailman reaches your door but after some conditioning he might only need to hear the sound of the mail man’s truck coming down the street to activate a response.  The Amygdala can be conditioned to react to a situation or stimulated to always react to a situation based on re-occurrence.  This is also known as “Kindling,” a brain training itself to behave in a way it was conditioned to do so.  A human can also learn to train themselves to react to certain situations as well and might explain why one person might find sadness in a piece of art where another finds beauty and light.  If you were taught to love the sports team your family loves and grow up in an environment consumed with that one team then it will take a lot of conditioning to rewire the way you think about that team.  The brain is a muscle just like any other muscle in your body where it can be worked on to grow stronger or it can be forgot about and gets weaker with time.  It might take lots of hard work to form new coping strategies but when you do you will find yourself to have a more positive outlook on something that once made you feel so low.  Rewiring your brain to think in a way it is not used to takes time but it can be done.  

Another contributing factor that controls the way these two parts of the brain function is family genetics.  One family’s genetic makeup might make them more prone to depression or anxiety based on the level of chemicals they have inherited.  Serotonin, Testosterone, and Progesterone to name only a few.  Your genetic makeup sets you up with a certain level of hormones that may make you more genetically prone to feel a certain way. Yet, by conditioning yourself to learn how to cope to certain situations in a different (positive) way you can actually re-wire your brain so that whenever you find yourself in a similar negative situation you now have a new positive coping response.  As a child I was fearful of the night time.  To me nothing good came out of the night because I was conditioned by tv and stories about ghosts and burglars and aliens and kidnappers who seemed to all come out at night.  It wasn't until my mother sat me down and taught me about all the wonderful things that happen at night like owls and dreams and building my bodies energy to grow and soft beds and pajamas where I was able to rewire my brain to look at the night time in a more positive light. 

First trip in a shopping cart without his infant car seat.  12 months old.  21 pounds. 30 inches long.

Hugga Bebe Pillow

Currently, one of my main personal struggles with my son is that he is growing out of his infant car seat and about two months late into getting into a toddler car seat.  I have held off for so long because he struggles so severely with his hypotonia that he is unable to sit on his own still even at 14 months old.  Not being able to sit or hold his body up makes it nearly impossible to go grocery shopping or to a restaurant without an infant car seat to carry him in.  This transition has hit me hard and it took a while for me to find a way to cope.  I found myself getting teary eyed going down the cereal aisle and seeing a cute little baby sitting happily and easily on their own in the shopping cart.  All the while I was biting my bottom lip to focus my thoughts on the pain of my teeth sinking into my skin that having to deal with the pain of knowing that my child, though twice the age of this other baby, is still unable to do this.  It was heartbreaking and from that point on I refrained from going shopping or out to eat because I just couldn’t cope.  Then I realized that I couldn’t just put my life on hold.  I couldn’t stop doing the things that bring happiness to my life.  I had to find another solution, another way to cope and re-wire my brain into thinking more positive about this situation.  I simple Hugga Bebe’ pillow did the trick and now I am able to cart my son around supported by a few pieces of overly stuffed fabric strapped together by Velcro.  Not only that, I posted a picture of our latest grocery store experience on a social networking site to show others about our new found experience.  From that one simple post many other families who were in a the same exact situation have also purchased or made a similar type pillow which helped them cope with this same situation.  Two things helped me learn how to cope with my depressing situation.  One, finding a solution to my problem.  Two, helping others by openly sharing my situation and solution.  I learned to rewire my thoughts and feeling in regards to my situation and can now cope and move forward.

Clinically, there are two main methods in treating depression or anxiety, medication or psychotherapy.  Both, which I learned from my meeting, have roughly the same benefiting factors and success rates but combining the two is probably more effective.  However, the difference is that with medication you get a quicker response because it is a chemical that is leveling out your Amygdala responses right away.  This is a great source for those who need immediate response.  However, there is evidence supporting the fact that with mediation alone there is a higher rate of falling back into depression or dealing with anxiety, and in some cases can even become worse when coming off the medication.  Psychotherapy aka counseling is the other method which is also very effective but takes much longer to see results as this form helps you find new coping methods to situations and in time solidifies a new thinking process.  This method, though more time consuming, has a higher long term success rate and lessens the occurrence to fall back into old negative behaviors.   This method focuses on your frontal cortex and helps you find new reasoning and regulation methods.  

  

Identifying that you have too much going on and might be falling into a depression is a hard thing to do.  Having one or two days of pure sadness, guilt, remorse, buckets of tears and not wanting to get out of bed does not mean that you are depressed and should be running out to seek medical help.  This means that you are having a moment and are working through it.  There is a fine line in understanding where you are at in dealing with your hardships because when you find yourself in those kinds of moments you really cannot think clearly and everything is a fog (your frontal cortex is in a losing battle against your Amygdala).  For myself it dawned on me that I may not be clinically depressed at this time but I do have many really sad moments.  I have many things to be sad about because I am still bereaving the life I had hoped my son would have void of any medical diagnosis and hardships.  These are sad moments and it is okay to be sad in these moments I have learned.  When something hits you in the face like it did for me with shopping carts you have to take that moment to really be sad and then you have to learn a new way to cope with your situation to turn it around and make something positive out of it. Easier said than done but one day after you have found a way to cope with your situation, you will be able to look back at it as only a memory and an experience you grew from.    

It is when these moments turn into weeks, months, or years of struggle when a big problem might exist and you should think about seeking professional help.  There is nothing wrong with seeking help be it either friendly or professionally.  You will be surprised at the many available free resources are on the internet with different blogs, networking groups, and professional websites.  If you feel that a professional approach would benefit you more than please do not hesitate to contact someone.  You will feel so much better once you are able to learn how to cope with your current situation and feel free to move forward in your life.  

Low Tone (Hypotonia) Part 2

I wrote about Noah's Hypotonia many months ago in this post.  However, it has been a long time since, and I have learned so much more about his condition and all that his Low Tone affects.  It is not just merely his inability to use his muscles but so much more.  I am still learning but I wanted to share some of the other facets to this condition I have come across. 

1. SMALL VEINS:  each and every time Noah has had to be stuck with a needle a whole team of phlebotomist's or nurses have to take part it what I like to call the Needle Stick Circus.  Many screams and tears have been shed by not only Noah but his Mamma too.  I loathe going in for a simple blood draw.  Noah's muscles are very mushy for lack of a better word.  His veins are hidden deep within these mushy muscles and are very small and hard to find.  Typically, muscles that have a lot of tone are more "solid" and the veins sit on top of them.  If you look at your hand you might be able to see your own veins clearly.  It order to find Noah's veins extreme measures have to be involved.  Here are some tips to prepare your child for a blood draw especially if they are low tone but they may just make the whole process better for any child.  

• Drink lots of fluids.  About 30 minutes to an hour before a needle stick get your little one to drink as much fluid as they can.  This will help their veins take on a more plump-ready-to-stick form.  It will be much easier for the needle stickers to actually feel the veins and know which one is more viable to use.  
• Heat:  If you know without a doubt that your child has tiny veins buy some of those hand warmers that you can break up and pack around with you and a very thin cloth.  About 10 minutes before the needle stick apply this warm compress to the top of their hands or top of their feet or inside of their arm whichever place you know works best for them.  The heat helps to kind of draw out the vein.
• Red Light:  If the needle sticker cannot find a vein and if they are new to this whole "small vein" condition then request and see if they can turn off the lights and use one of their little red lights to help find the vein.  This will prevent multiple pokes and stabs.  The red light shines through their skin and helps them locate veins.  
• Request an IV TEAM EXPERT:  All nurses and techs believe themselves to be an IV expert but did you know that many hospitals actually have a certified team of individuals that are actually called IV Experts.  These individuals are very skilled and talented when it comes to small veins and will save a lot of tears if you are able to get one to help out right away.  Many of them are busy and it might take a few minutes to get one that is available but if you have the time I highly suggest this route.  
• Forehead Vein:  There is a very large vein that sits right on the top of your forehead called the Frontal Vein.  This is the cause of that massive bloody mess you get with the slightest pump of the head.  This is also my favorite spot for Noah to get an IV.  Yes, he will cry but it only takes literally one poke of the needle, a couple pieces of tape and a little stocking cap to cover his head and all the pain and stress is over.  I would not really recommend this for a simple blood draw but for an IV that will be there for an extended amount of time it is a great option. 

2.      DIGESTIVE SYSTEM ISSUES:  Low Tone not only affects the muscles but also all of the internal organs as well.  They can also be described as weak in nature and can perform at a less than desirable manner.  The whole digestive system can be affected by hypotonia and Noah suffers from this condition greatly. 

·         Reflux aka GERD aka Sandifer’s Syndrome aka Acid Reflux Disease: Reflux is common in babies and Zantac is normally the liquid medicine of choice prescribed by doctors.  Zantac helps to reduce the amount of acid that is already in the fluid in their tiny tummies.  Prevacid is another highly prescribed drug that can come in liquid form if concocted at a compounding pharmacy but it has a very small shelf life this way.  Or you can get small capsules that you can break apart and mix with a spoonful of food.  This medication should usually be given in the morning and helps the stomach stop producing acid but does nothing for the acid that is already in the stomach.  Hence the reason why Noah is currently on both acid reducing medications. Reflux can take on many forms.  Severe pain from indigestion and heartburn to constant throwing up.  You have to be careful what kinds of acid containing foods they are eating and what kinds of other foods aggravate their reflux.  Milk protein is a common one as well fruit juices.  Be careful to not over fill their stomachs and to always keep them in an elevated position to let gravity help keep their stomach from sending spurts of fluid shooting up their esophagus.

·         Swallowing & Chewing Issues: A Swallow Study can be performed to see if your child might suffer from swallowing issues like silent aspiration or a weak Epiglottis or a really large tongue size.  All of which Noah has and all of which makes it really hard for him to take in enough calories a day.  Chewing is another hurtle that kids with hypotonia are faced with as their muscles in their face and mouth are so weak that chewing hard enough to actually mush food is a very daunting and difficult task for them.  It takes years to help them learn how to enjoy chewing and to swallow the bulk of what they just chewed.   

·         Sensitive Gag Reflex: When kids with Hypotonia have swallowing issues it also means that they might have a very sensitive Gag reflex.  This makes it hard for them to learn how to swallow anything with more texture than stage 2 baby foods.  Oral stimulation with as many approved oral toys or foods can help make sure they do not gain an oral aversion.  Noah has a major aversion to liquids and will only drink them while he is asleep and we have tried everything to change this with no avail. 

·         Hiatal Hernia: We just found out through an upper GI Barium Study (x-ray while they drink barium) that Noah has a Hiatal Hernia.  His is at the base of his esophagus right where it meets his stomach.  Each time he refluxes a small portion of his stomach gets sucked into the esophagus.  A simple surgery can fix this but since Noah is so young (12 months) his GI doctor wants us to wait and see if as he grows this hernia will get smaller and go away.  I am not sure if this hurts him or not.  I pray it doesn’t.

·         Stomach Dumping (too fast or too slow):  During this same Upper GI study that Noah had done it was found that his stomach dumps into his intestines really fast…like super-fast.  This is usually not the case with those with Hypotonia because according to the GI doctor they normally see slow dumping from the stomach into the intestines.  However, since Noah’s stomach dumps really fast it also makes for many daily blow outs and is also another factor is why he isn’t gaining weight like he should.  His digestive system is moving so fast that it doesn’t have time to fully absorb all of the nutrients and calories from the food we were able to get into him.  There are medications to help speed up slow stomach dumping (but it will cause diarrhea) and a medication to slow down fast dumping (but it will cause severe constipation).  Right now Noah is not taking anything as constipation is something we want to refrain from at the moment and are trying our best to increase his calories by increasing his appetite with a medication called Periactin.

3.      MALFORMATIONS OF CERTAIN MUSCLES:   This is our newest and most unknown facet of Hypotonia but it looks like 2013 will make me somewhat of an expert on this.  When a child is unaware that they have a certain muscle to move a certain way or a certain body part they tend to wiggle and move around until they find what works for them.  This tends to teach them to use muscles in the wrong way or to use one muscle for a movement it shouldn’t.  For example:  Noah tends to throw his upper body and head backwards a lot.  It makes it really difficult to hold him.  This is a bad behavior he has learned will get him to be mobile.  He first started to do this when he would lay in his bouncy chair and he taught himself that if he throws back his head he will get a bounce from his chair.  So then he would repeat it over and over and we all thought it was adorable because in our minds he was experiencing cause and effect.  However, this only taught him to throw his head and back backwards whenever he wanted to “move himself”.  We finally broke this behavior through therapy but it has reared its nasty head again when we introduced a Walker and he taught himself to once again throw his head back and push on his heels then we would go backwards in the walker.  Again, we were so excited he was actually playing and moving in his walker to realize that we started a bad routine again.  He is using his back for everything therefore not using his arms or shoulders or hands.  Same could be said for any body part or muscle that is being used in a bad way or not being used at all.  Noah’s feet are another concern for us this year.  They have started to become a bit malformed because he pulls them upwards and outwards and the muscle is starting to get strong where they shouldn’t.   Looks like a trip to an Orthotic Doctor is next on our list.

4.      PATIENCE, PERSISTENCE, AND THE LITTLE THINGS:  These are just a few of the most wonderful skills you as a parent will learn, gain, and continue to grow without really even knowing it.  Raising a child with Hypotonia requires constant “invisible therapy” as I term it.  You will learn how to do everything in a way that will help them with their hypotonia symptoms.  Feeding, bathing, playing, changing diapers, getting them out of bed, and even rocking them to sleep will play a part in you as their caregiver helping them learn how to do things in a precise way to help their muscles learn correctly.  It will soon become second nature and you will no longer realize you are doing it and therefore it will no longer seem as work to you and just become part of you and your child’s bonding experience.  You will also find that you will have this whole new level of patience.  Not only with your child but with everyone around you.  Waiting at the pharmacy for an extra five minutes no longer makes you want to pull your hair out.  Rushing things is no longer an option and you gain a whole new appreciation on the details that go into the simplest of things.  You will also be so in tune with your little ones that nothing will be taken for granted and the little things become enormous celebrations. We celebrate almost daily with cheers and smiles and sometimes even tears over Noah grabbing something or looking directly at something.  All these cheering and smiling and jumping for joy moments make for a wonderful life and a great environment for your little ones to grow up in.  So much can be learned from raising a child no matter who you are or what obstacles you have to overcome.  Hypotonia is just another excuse to pay closer attention to the little things in life.

Now I Can Foundation: Physical Therapy

Noah had a very unique opportunity to enroll in an intensive physical therapy clinic located in Provo Utah called Now I Can Foundation.


Without rehashing everything that is already on their own website about how truly wonderful this PT clinic is, I will just tell you our experience and how we personally felt about each step of the way (with pictures and video I might add...so this will be a very long post).  

Exhausted after day one.  Kinesio Tape on his lips

This is a VERY intense PT clinic and not for those who cannot handle their kids crying to the point of coughing and making a snotty mess everywhere.  It was hard on both Noah and myself (or those wonderful family members who took him a day or two...you know who you are :))  Honestly, it was very very very hard due to the intensity of the therapy, the constant crying, hearing other children cry, the drive, the financial cost, the interruption of our daily lives, the soreness, the test on our patience, the traffic getting to the office off the freeway...ect.  However...the worst part about the whole adventure was the very last day when we drove away not knowing when we might get to go back because even with ALL of the hard stuff it was 100% totally worth it!

I could make this an extremely long post if I went into detail about every single day but to save you the headache I will try my best to make quick detailed descriptions about what they did to/for Noah and how it helped.  First, you have to keep in mind that every child and their challenges are different and in Noah's case our biggest challenge is his severe hypotonia (low muscle tone).  His is so severe that he couldn't even hold his head up at 12 months of age.

You can purchase either a 3 or 4 week "session" at Now I Can.  Each session consists of going Monday through Friday for four hours straight with zero breaks.  You can either get the morning session that goes from 8am-12pm or the afternoon session that goes from 1pm to 5pm.  We opted for a 3 week afternoon session.  Their facility is pretty small so they can only take on a grand total of 6 children in a 3 week session (3 in the am and 3 in the pm).  Of course this is all subjective to the staff on hand and the time of year as well.  You have to be sure to contact their office to go through their availability as they do fill up really fast since they are so wonderful.  As of December of 2012 the cost was $2000/WEEK....really pricey!  HOWEVER they do take insurance and they do offer grants that are not subjective to your family income at all so be sure to submit an application.  We were fortunate to have raised enough money on Noah's fundraiser to help us with a majority of the cost as well as receive a $1500 grant from the foundation. They also offer a free assessment if you would like to visit the facility and have them evaluate your child to tell you how they can help you and your personal goals.

My first hesitation besides the cost was the fact that Noah was only 12 months old.  How could he possibly do four straight hours of therapy without falling asleep. My second hesitation was his inability to eat or drink well...or drink any liquid of any kind while awake.  How would he stay hydrated.  Well to make this quick they can do every single therapy exercise even when they are sleeping like a log (which Noah did a ton).  They can also work with tiny babies and the earlier they start the better so his age was not a challenge at all.  Also, there is a 30 minute time frame where they are in a Stander and they can eat or drink or nap or you can read books to them or play with them which makes them feel like they are getting a break.  Also, we found that as long as Noah drank enough that morning he would stay hydrated and we could then use wet clothes to moisten his mouth with during therapy.  They do not stop what they are doing ever...even to change a dirty diaper they incorporate some type of therapy stance or trick into it.   They start exactly on time to the minute and go until the last minute of the four hour day.  It was a lot to take in the first week and I will admit I cried after the first and second day because Noah cried the entire time.  As the days and weeks went on it got much better and we even had two full days with zero crying.  It really shows how much our little ones can take and how much better they are for being challenged.  Noah was much stronger than we ever thought and now know how much he can handle at a time and where his limits are.

You are working with a team of therapists so every single day you get a different therapist and sometimes even two different ones a day.  When we went we had three wonderful therapists working during our session.  Sergio, Nacole, and Mark.  All three have different styles and techniques and they all work together so well.  They are so kind and easy to talk to.  I never once felt intimidated or threatened by any one of them.  They also listen as well so if you feel like they should try something or stop doing something they listen to you and do it.  They are not scared of screaming kids and have the most patience I have ever seen.  They will wipe noses and change diapers and sing silly songs and you can just see the pride they have for their jobs and patience.  Another good point I should highlight is that if/when you feel comfortable with the facility and the staff you may actually leave your child there and go for a walk to clear your head or run errands or do some work or go shopping if you want.  Take a little break for yourself while your child is being cared for treated with respect and kindness.  They have a small tiny itty bitty room off of each of the three therapy rooms that is set up for you with a couch and books and a tv and laptop hook ups.  It has a window so you can watch the entire session from the room.  They will let in the room the entire time as long as it does not distract your child from their therapy.  Many children will just cry for their parents or not want to listen to the therapist if their loved ones are in the same room as them. I spent most of the time in the therapy room but once or twice I could be found working or reading a book on the soft couch in the parents room as I called it while Noah screamed bloody murder and I was doing everything in my power to stay sane and calm.  When things got too hard on myself I would look to the therapists and see their calmness exuding off them and that helped more than I could even describe.  Its like they know that the discomfort and irritation benefits these children and that no tear or scream or runny nose could sway their work.

NeuroSuit

The first day is a 1 hour assessment day where the child will be fitted for a NeuroSuit.  This suit is meant to help their body and muscles to work in the manner they should and helps eliminate them from moving or bending in a way that is not natural.  For Noah they created the suit specifically to make him not have the ability to arch backwards as that is one incorrect habit he has formed.  It also acts like a pressure suit to help with muscle memory and awareness.  It takes about 10 minutes to put on and off each day except this first day when they are getting him all measured and fitted.  This time also acts as a kind of break for the kids to just lay there and not have to work.  After the fitting they did all kinds of exercises to see the areas Noah needed work on.  Noah's main points were his balance, his head control, and to help him realize and use his arms. To buy one of these suits of your own they run upwards of about $7000 and then $700 for 100 of the small black bands that strap you in them.  Mucho Expensive!   

Each day flowed the exact same and never really changed except for maybe 2 of the days.  This allowed for consistency and normalcy for myself and Noah.  After the third day I knew exactly what they were doing and going to do next so I was able to time liquid for Noah or if I had to run an errand.  It also got the point where I could time diaper changes as well since moving little bodies will make for really horrible messy blow outs :)

Each day started with about a 40 minute warm up where they take Noah's socks off and would do all kinds of really soft pressure massage like exercises and techniques to his entire body to wake up his muscles and stretch him.

weight on his arms and hands and shoulders

Neck stretching

 This would then flow into floor exercises to work on his balance, stance and muscle control.  Also, I think to evaluate where he stood at that point to access if he was gaining more control or awareness each day.

Side laying with hand and arm reaching

Balance and leg support

Then it would be time for the Neurosuit and many more floor exercises with/without tables, benches, and other propping equipment.

Look at that Head control and balance on his arms

Knees together, weight on arm, lift head

Upper body balance and weight baring through arms and shoulders

trunk control, knee and hip balance, head control

alternating leg stance with hip lifts

backward arm strengthening and balance with leg support and extension

He found his right arm this day and caught himself from falling over...I cried!

After the Neurosuit and around the 2 hour mark they would set him up with a makeshift Stander to get him weight baring through his hips, knees, and ankles.  This would also help with his neck and head control.  It would be at this time where I would have 30 minutes to feed him or he would nap or I would read him books or sound making toys.  He loved this part and I made sure to be there every single day to be by his side during this time.  The therapists leave at this point but if you were unable to be there they would stay with your child or one of their fun loving aides would be there to be by their side.  They are never left alone ever.  **Quick note to those looking for a stander.  They are extremely expensive but if you look at these pictures you will see that you can make one at home that will do the same stuff as the expensive ones.  We just got approval through our insurance for one but I made sure to take good pictures just in case we had to make our own.

Stander for bigger kids.  Noah didn't fit in it but I got a pic anyway. Plywood and 2X4s with some heavy screws and washers, a bit of carpet, some stickers and paint, and then you will also still need leg braces and some type of strap system to support them onto the stander with.  

 After our 30 minute "break" in the Stander it would then be time for the Spider Cage. The Spider Cage is meant to be used for low tone children whereas the Monkey Cage is used for High Tone kids.  We never even saw the Monkey Cage.  Most children I guess love the Spider cage as it is easier for them to do exercises in.  However, Noah hated it!  He cried most every single time he as in it.  I think it is because he has yet to learn that he has arms and hands and can balance himself by using them.  It is a large metal cage that Noah and a therapist would sit in the middle of.  Noah would then wear what looks like a weight lifting belt that had metal rungs on it.  Then 8 bungy cord looking ropes would attach from the cage to the rungs from each of the four corners of the cage.  Noah would be in the middle being balanced by the push and pull of each of the ropes.  The therapist would then be behind him maneuvering his body into different positions.  This would go on for about 45 minutes or so.  He would usually wear leg braces as well to help him in the standing position. 

Really does make them look like a spider

Hates it on day One.

Week 2 he got more used to it and they stood him up with leg braces

Week three we actually had a few smiles in it.

After the Spider Cage is was back to the floor mat to do floor exercises again.  I would see major improvements at this time from all the muscle awareness that had been created from the NeuroSuit and Spider Cage.  It was also at this time where they would try out new things like table propping or Kinisio Taping.  Then they would do some more cooling down stretches and the clock would hit 5pm and we would then be on a mad dash to the car to try and beat the going home work traffic.

Table propping with Noah weight baring on his arm and both feet on the floor Week 3

Front view of Noah with the Kinisio Tape...Baby TRON is what I called him

Back view of the taping.  It lasted for 6 days and left some pretty dry skin underneath. 

The first week was the worst because Noah screamed a ton, he had a stuffed nose so there was a mess every day from the crying acting as a natural nasal-irrigater.  Week two is where we saw all of his improvements start to come alive and was my favorite week.  I cried a lot out of pure happiness and joy for my son this week.   Week three was trying to test him further and to have me learn what I can do with him at home after the session was over.  They do provide a folder of home exercises with pictures on the last day.

Our realistic goals on day one were to help him gain head control, try to get him to roll over, and to start trying to get him to sit not resting his head on anything (but still supported).  Today just one month from those goals being set I am happy to say that Noah is at a 99% head and neck control.  He can sit up assisted for a very long time with his head not resting on anything. And even though he still hasn't mastered rolling over he is finally starting to figure out that he has hands and arms. Each day he has surprised me by catching himself on an arm or grabbing something.

This video is from day one at his assessment.  He couldn't even keep his head up at all without the head strap and hat.  He also couldn't balance nor would he even try to use his arms or hands.  His legs also had to be tightly strapped down to keep his knees together and his legs straight. Sorry they are all sideways.

 

This second video is from week 2 where Noah's head control got significantly better and this is the day he found his arms and hands. He was also more comfortable in the NeuroSuit. 

 

This last video is from week three.  You will notice his remarkable head control now.  He also was doing so well with his balance that they were able to get him in the squatting position and he didn't mind it at all.  His back was straight and he was no longer trying to pull himself backwards to over correct himself like he was in the beginning.  

Our overall experience was rewarding and we will be going back as soon as we have the financial ability to do so (as well as time off work :) ). I highly recommend intensive therapy.  For every tear drop that was shed during this time we have experienced as many from watching him learn and progress since. 

The staff at Now I Can can answer any questions about what they can offer you but if you have any questions you would like to ask me personally please email me at my address listed on the left side of my blog. 

One last shout out to my sweet Noah.  I witnessed a miracle one day and actually got a portion of it captured in a picture.  As we were patiently waiting on a doctors office I looked down and Noah had reached out his arm, grabbed his bell toy with his hand, grasped it hard, shook the bells, and then had a death grip on the toy for about three minutes.  I was overcome and wanted to jump and shout...but I am sure everyone else would think I was insane so I just snapped this picture and almost peed my pants out of pure happiness and laughter.  

Death grip on his bells