Language Translation

Tuesday, July 26, 2011

Therapists with You and Your Child and Your Finances

*This is a blog about my own life and my own experience.  If you choose to follow anything written here, you do so without any claim on me for problems or complications that may arise.  I am not a doctor.  I have no degree.  I am not a professional.  This is my perspective and experience, that's all.  If you don't think you should do something on here, then don't.*

Hi Families!

Today I was reading about a mother who is stressed because she cannot get an official diagnosis on paper.  She is worried about getting the supplemental income to pay for all of the therapies and medical appointments her son needs.  As I read that, I thought about my own life that was therapy free and the lives of the children I work with - some with and some without therapists.

I thought about all of the therapies that cost so much.  I thought about all of the things that families do to get those therapies, the sacrifices they make.  And then, I thought I ought to say my two cents worth, although you may think it worth even less than that.  Once again, my thoughts are my thoughts.  I hope they are viewed the way I intend them.  I am not looking for arguments or to incite therapists or parents.  Rather, I am trying to show a different perspective.  That's all.  So here goes.

Parents, you are in need of education, real education.  YOU are the specialists when it comes to your children with special needs.  You are the ones who are with them all day every day.  You are the people who see the subtle changes, the light in the eyes for a split second, the panic that passes after a moment on the face.  You are the ones who see the food reactions, the medicine reactions, the physical reactions and seizures.  Most importantly, you are the ones who feel them.

Your heart tells you far more than you are accepting.  You know far more than you realize you know.  Why are you looking for a doctor or a specialist to validate what God gave to you innately?  This child was given to you to raise.  Not the doctor or the therapist or any other place.  YOU know what will be best for your child.  Do not second guess that voice inside...once you do it will lead you to second guess yourself the rest of your life.

Now, when I said you need a real education, this is what I mean.  You have access to everything you need, but you don't know how to use it and integrate it or, in some cases, are just too lazy to do the work.  The therapists are there to show you technique and tips and tricks to help you.  They were never intended to be the end-all of therapy for your children.  Therapists should be used as a resource when you don't know what to do next and have not had success with what you are doing.  They should not be the ones doing the regular therapy...they don't have enough time for that.  But, even more importantly, your child will accept the therapy and the good that comes from it much faster if it is coming from you and not from a stranger.

I believe that each child with special needs is developing differently, they are not stagnant.  While those around me were learning social skills, I was learning God's voice.  While the teenagers I knew were worrying about boys and clothes, I was thinking about the love of God and His gifts to His children.  NOW, the roles are reversed.  We are learning differently, that's all.  Not one better than the other or higher than the other.  Now I am the one learning the social skills, learning about clothing and hair and make-up, etc.  And isn't it wonderful that I get to go to my friends who are learning to hear God's voice and learning to feel His love?!  They help me learn the social and physical part of life, and I help them learn the spiritual and intangible.

So, if you accept that we are all learning different things, the first thing to do with your child is to back off and let him learn.  It may not look like learning to you, but he is.  He will show you when he is ready to learn something new.

The girl I am currently caring for was overloaded with all of the therapies and therapists and integration charts.......YUCK!  I wanted to run away and I wasn't the one required to do it all.  She was smothered by it all.  Thankfully she has a wise mother who does not think her way is the only way.  We talked about the therapies that were useful and the therapies that were harmful right now.  And I emphasize the "right now" because they are good therapies.  Just where she was emotionally, physically, mentally, and spiritually, Elena was not ready for all of the therapies she was being asked to do.

As soon as I redesigned Elena's therapy schedule to suit where she is right now in her desires as well as her abilities, we saw overnight changes.  She is progressing rapidly.  As do all children who are allowed to learn the way they learn best rather than being told to learn the way "everyone else" learns.  Elena is doing things the doctors said she would never do.  She is moving beyond what every doctor ever told her mother to hope for.

I do a couple of things to make this therapy work for Elena.  First, I throw out the amount of time she takes on a therapy.  I don't care about how long it takes.  We start where she is neurologically.  So, if she were 14 months old neurologically, then I base my therapies on the things I would do with a 14 month old who had neuro-typical development.  I do not base it on the idea that she is slow and has to catch up.  I am coming from a place that says, "This is where she is.  What would I do if she were a NT 14 month old girl?  What games would we play?  What developmental things would I integrate to make it a smooth transition into the next skill set?"

Now, granted, some of the games are a little harder for me to play because physically she is not 14 months old.  If your child is 30 physically, but 2 neurologically, the games will obviously need adaptation.  But you can figure that out because you are smart enough to do that.

So, back to Elena.  If she were truly 14 months old right now, I would be doing a lot more neurological exercises than physical ones.  She would still be tottering back and forth, if she were walking.  She would occasionally stumble and fall.  Sometimes she would try to run and go smack down, face first.  That's all part of the experience.  And physically, if that is where she fits, then great!  Her progression is on the same level physically and neurologically.  It gets hard when the physical is so ahead of the neurological, as is the case with Elena.

Before I came, the main focus was her physical development.  Now the problem is trying to catch her brain up to her body.  It is a much smoother transition when the body and the brain progress in tandem.  But, nonetheless, there is still plenty that is and can be done.

At 14 months, I would be encouraging babble and diverse environments with a NT child.  So why should she be treated any differently?  I treat her like a NT at whatever neurological age she is.  Does that make sense?  So I don't treat her like a slow 5 year-old.  I treat her like a NT 14 month old.  There is a big difference.

So I chase her around the house with a foam sword touching her feet to get those legs moving and help wake up the nerves in the skin.  She is always barefoot in the house.  We do as little clothing as possible so that she has her skin touching things all of the time.  This, again, helps her to wake up those nerves in her skin that have not yet fully connected to the brain.

Have you ever noticed a NT child of this age?  They hate having their clothes on.  They want to feel everything around them.  They want to touch and taste everything.  So I let her do the same thing.  She runs around the house in nothing but a diaper.  We chase, we play, we sing, we read stories, I point out everything I'm doing and tell what it is, why I'm doing it, the uses the object may have, etc.

When I chase her around the house and catch her, I lay her on the ground and then I tickle her - top to bottom.  My fingers run over her from head to toe, front to back.  This wakes up the nerves, gets the blood flowing to those areas of the skin and makes it "wake up."

These are just a couple of things I do.  It is just playing and having fun.  I don't think, "Okay, now I need to spend X amount of time chasing and tickling her skin. . . OH!  Time's up!  Now I need to sit and read for XX minutes."  We just do what she thinks will be enjoyable.  Some days she doesn't have a lot of physical energy and spends more time sitting and reading or learning the mechanics of toys.  Other days she is full of energy and wants to spend the entire day running in a circle around her house while I catch her and tickle her every few laps.  Sometimes we crawl and she will not start crawling until I'm on my hands and knees - my body above her's as she begins crawling and the game is that she tries to crawl faster than I can.

We just play.  A little secret, what children do naturally as play is the very thing they need developmentally to grow and progress.  When we make it therapy and timed and strict and within guidelines and confines, we take the fun out of it and then the play becomes work.  Then mom doesn't enjoy it and the child doesn't enjoy it.  If you feel very uncomfortable with it all, go get a book at the library on regular old child development.  If you feel more free, sit and watch your child play - or watch other children at a playground or park who are the physical age of your child's neurological age.  Mimic that kind of play.

In the end, it's about helping him while still playing and having fun.  The therapies are needed, but the great financial strain is not.  If the parents will do the work, the therapists can guide and help and then everyone is successful.

*This is a blog about my own life and my own experience.  If you choose to follow anything written here, you do so without any claim on me for problems or complications that may arise.  I am not a doctor.  I have no degree.  I am not a professional.  This is my perspective and experience, that's all.  If you don't think you should do something on here, then don't.*

Saturday, July 2, 2011

Repetition, repetition, repetition.....

Well, as is true with most of my posts, I learned something today while working with a wonderful family that made me realize another thing that may not be commonly known.  Repetitive phrases and motion seem to be a mystery to those outside of the spectrum.

Let me see if I can shed a little light on it, and by so doing hopefully shed a little light on what is going on inside of each of these wonderful people in those moments.  First we'll address the rocking back and forth, and other repetitive motions that are of a less flailing nature.  It is always to release some buildup of energy and emotion.  In this instance, however, the emotion tends to be my own emotion rather than the emotions I pick up on.

It is not unusual for my own emotions to overwhelm me.  They tend to build up inside and I feel like I need to send them somewhere because it is just too much to hold.  As a child I didn't cry unless I was in extreme pain.  Even then, rarely did I cry or have tears.  Usually the expression came in the form of screaming and yelling.  I didn't know how to express the feelings I had inside.  It seemed like I couldn't cry.  I can now, as many who know me will attest.  I cry too easily now I think.  But that is a tangent, sorry.

Most of the people I work with are unable to express emotion.  It is not because they don't feel.  They do feel, and more deeply than most of you do.  It is just next to impossible to express the way it feels in words or crying or laughing or hugging or anything else.  So there is this literal ball of energy and emotion that has to be put somewhere.  Thus the rocking back and forth movement.  If your special person is rocking back and forth, it is a sure sign that they are feeling something so strong and it is more than they know how to process and feel.

Also, when rocking back and forth, that movement creates a momentum that allows the energy centers in my body to balance a little better.  This is important as a clogged Chakra can make you incapable of processing the emotions stored there as well as lead to sickness.  So, because I cannot cry or cannot verbalize what I am feeling, I rock back and forth.  Personally, I am capable of crying, but sometimes it still isn't enough for all of the emotions I am carrying.

Now, we move on to the repetition of words.  Once again this has to do with emotional capacity more than verbal or cognitive abilities.  I am very verbal and even occasionally eloquent.  But when I begin to feel things deeply and I am in a rocking back and forth state, my vocabulary seems inadequate.  I am reduced to simple phrases that seem like I must be feeling a very shallow emotion.

To explain what I am trying to say: I had an experience where I was really grieving, deeply.  There was so much pain in my heart and it just filled me to the point that I couldn't function.  My vision became blurred and my depth perception was horrific.  I couldn't speak without severe stuttering.  And the pain I felt in my heart...I don't have words even with all of my faculties about me.

So what I looked like was this:  I was rocking back and forth, crying with mouth wide open and my voice making a horrific sound and occasionally saying simple phrases repeatedly.  Those phrases were very simple like, "So Sad, so sad.  All alone.  So sad."  That was all my brain was capable of finding at the time.  So I was sitting by myself, crying aloud repeating those phrases and rocking back and forth.  I'm sure it was quite the pathetic spectacle.

Had a person been there, it probably would have seemed a much more simple pain than it actually was.  In fact, a friend was there later, and the volume changed, but the words and the rocking were still there.  I don't know how it was perceived, but I know that the ache was to the depths of my soul - gut wrenching and harrowing pain.  Trying to put it into words actually makes it feel like I am somehow cheapening my experience.  Those simple phrases were more for my personal comfort than anything else.  I wasn't trying to tell anyone how I felt.  I was trying to comfort myself by acknowledging, verbally, that I was feeling something and it was very hard to feel.

Now, not all of us are capable of crying or verbalizing.  But if there is a repetitive motion, sound, or word that is coming out, I will guarantee you that it is linked to very strong emotions that have nowhere to be released.

Hand flapping is something else.  It is still a release, but it is more a nervous, anxious energy.  It could be emotions that are rooted internally, or emotions that are being picked up on.  I don't flap my hands, but I do rub the knuckle of my thumb over the nail of my middle finger - clockwise on my right hand and up and down on my left hand.  It helps me release the nervous energy so that I can stay focused a little longer.  I mostly do it when I am anxious to find the right phrase or word to express something.  Sometimes it is because there is too much excited energy around me and I find myself wanting to jump out of my skin and out of the room.

The words do not necessarily correspond the way you think they will.  Sometimes they mean exactly what you think they mean.  Other times and to be honest, most times, the one or two words used have layers and layers of meaning to us.  They are like a code word for a whole book of emotions.  The more simple my phrases and words, the more deeply I am retreating inside to try to find healing and comfort and help.  I know that as I retreat inward I am no longer working so hard to make my body look "normal" and I lose a lot of my grasp on this plain.  It allows me to access my connection to God and to allow His love to heal me.

Simple is a an eternal principle.  The more we simplify, the closer to light, truth, and God we come.  The more complicated we are - in our speech, relationships, knowledge, expression, etc. - the further we step from absolute truths and healing love that can only be found in one place.  Only the love of God is capable of truly searching out and healing the wounded soul.  Next time you're aching to the depths of your soul, try it our way.  Sit on the floor.  Get a comfortable repetitive rocking motion going.  Focus on your heart and on the pain in it.  Feel it.  Let it come to the forefront of your consciousness.  Then open your mouth and let your voice do what it will.  Don't try to think of a way to express it.  Just feel it.  If you absolutely must have words, keep them simple. 

In the Hebrew language, when finding the numerical meaning of a word, you always work with the lowest possible number.  This is how emotion should be too.  Work with the simplest words possible.  Instead of saying, "My heart is aching to the depths of my being, and it feels like the pain will literally rip my heart into a million different pieces."  Try, "I hurt.  So sad.  No good.  Pain.  So much pain."

You will be amazed at how much more emotion comes out and at how much closer to healing and being complete you feel.  I believe we can all take example from those who do things without any external pressures to worry about.  They don't care what others think of them and are rarely even aware of those around them.  What they do is not influenced by others, only by God.  So there is no mask, no pretense, no walls, and no vanity.  Truth.  That's it.  Always and forever there will be only eternal truths.

*This is a blog about my own life and my own experience.  If you choose to follow anything written here, you do so without any claim on me for problems or complications that may arise.  I am not a doctor.  I have no degree.  I am not a professional.  This is my perspective and experience, that's all.  If you don't think you should do something on here, then don't.*