What is beyond the diagnosis? All that lingo; Developmental Delay, Self stimulatory Behaviors, Communication Delay, Echoic Speech, Sensory Processing Disorder, what lies beyond that? Who really are these children?

When a new child walk into a classroom, a good teacher of course, wants to be as well equipped as possible. If records, or IEP’s are available, a good teacher reads those before meeting the child, to know some of what to expect. However, does the lable sometimes, often, tell us who these kids are? Do our expectations of the lable limit these kids? I think, very often, that happens.

I have witnessed situations where one professional thought a child had autism, there was talk about getting the child evaluated for autism. The child was evaluated and no diagnosis was given. But in the transference of this child from one teacher to another, the second teacher saw the child as autistic. The teacher told me, “Oh he is autistic, watch, he does this and this.” I watched and never saw the behavior described. I mentioned I had not witnessed this, she watched, couldn’t see the behavior either but was very confused and insistent this child was autistic. After some time, and no diagnosis, the expectation of this behavior ceased to exist, and the behavior was actually never witnessed. Sometimes we think we see things because others say so.

There is the other side of the coin – which is much more frequent, which is my bigger frustration. When a child does have a diagnosis and does exhibit the behaviors being described set a very low bar for an expectation. For example, say a non-verbal child  who frequently flaps their hands is labeled severely autistic. This may be very true – but still, who is this person, this child? Is this a self-stimulation behavior and why do they do it? Lets go beyond self-stimulatory as being the definition for why.

I want to clarify.  I do believe, especially with older children, these repetitive behaviors learn to serve a negative purpose. I feel that sometimes this negative behavior or purpose could have been prevented at an earlier stage.  When we repeat something over and over, it is like digging a trench (the trench of a brain pathway).  The more we do something (dig) the deeper and more engraved the path becomes (the more we learn, develop or create a habit).

When young, non-verbal children, more especially demonstrate a behavior repeatedly (flapping the hands), this, I find, is often a physical symptom or form of some kind of excitement, distress, or other grand emotion. Grand emotions, excitement, distress exists within us and most of us can at least find temporary relief or expression of that through words, gasping, squealing, shouting or crying. It’s when a child has no speech and very little control over anything coming out of their mouth (that isn’t autonomic yet) that those feelings still exist within – just like all of us. These feelings need to get let out. If a child can not do that with their mouth, then next is the body (hand flapping). It is communication.

If a non-verbal pre-school-er never gains any vocal skills, more anxiety build – the hand flapping gets stronger. The older the child gets, this repetitive behavior that has been done over and over and over with no other direction for release becomes a one way street. The anxiety goes to hand flapping – no other release – more hand flapping builds anxiety and then – melt down. Now we have a self-stimulatory behavior.

If, on the other hand, a small child does something repetitively (example – hand flapping for anxiety) and we meat the behavior, reflect it and have the opportunity to inject the smallest alteration, we have broken that road. The child has shown us what he can do. When we can alter this slightly, we have opened the door to the next step.

What I have experienced is people seeing an “abnormal behavior”, for a nuero-typical child, and labeling that as self-stimulatory and that is it, end of story.  One experience I had recently was in talking to another professional who worked with the same child as I. I was told, up until recently, the child had been silent – but now babbles, a lot. This was exciting news for me, to begin work when some kind of block had been broken and progress was beginning naturally. All the possibilities! The professional I spoke with said, “yes, but all he does is babble, so we match things – he can do that.”

What I heard with this statement was: “That’s it, that’s all we’re going to get – so we will match”. My interpretation of what I heard may have been wrong, but having heard statements with that meaning frequently, that was what I took away from the conversation. As I watched this little child, I began to learn who he was. When he ran, he became alert, happy, excited and sound came out. In my therapy sessions I worked to get him to do this – sound is our starting point. He is very alert and watches me as he is moving. As I have spent more time with him, and he with me, when he stops, I stop playing and sing “stop” (sometimes I hear him make an “ss” sound) . I do not feel he is fully in control yet of this sound, can make it whenever he wants to, but that is a great place to start from, very exciting! When he gets ready to move, I say “ready set.. GO!” and continue to sing go until he stops again. With this predictable repetition, he now has also gotten to know me, has gained a sense of time and watches me as he slows or gets ready to move. He waits for the familiar words or sounds to come out of my mouth. I always use his name , and occasionally get eye-contact when calling his name. Music Therapy, through it’s predictable nature, has provided this boy a structure he can count on. It is reliable because it is paired with what he is already doing. I have learned his babbleing is a happy, energized release by watching his face and actions. It is not a meaningless activity, it has meaning.

As the music is paired with his excitable movement, (the movement and the music being a 2-way road – excitement being motivated by another sense) he babbles more. As he babbles more, and is excitably alert and connected to me with knowing, I am going to stop and start with him, he also hears the same sounds over and over and over – stop and go. These are beginning to gain meaning for him AND the verbal sounds are now linked to other sounds (the music which includes vibration, a physical sensation) all being processed together. The trench that began now has a direction. We have begun to build a road, a neurological path with direction and meaning.

Excuse me, I think I have jumped onto a new highway, back to my original position. Yes this boy is non-verbal and hand flaps, but by getting to know him, watching his cues, watching his communication, we have created social cues to watch together. I know he is happy, and excited. He also knows I see this because what is being reflected back to him in my music, my eyes when I watch him is that same excitement. This supports him.   He is reading and interpreting this. We have begun to know one another, and in that familiarity is comfort AND ability to step further. So many systems, goals, needs, strengths are now being linked and progress has begun.

I often have heard a professional say, when referring to a parent of a special needs child, “They (the parent) only see it because they want to. More often than not, parents, you do see it, it is not just in your head. Your child has that comfort and predictablilty with you which allows things to happen more easily. Listen to your gut parents – you do know your children as who they are, not what they are – (autism, developmentally delayed, ppd, etc.). In that knowing, you have set those neurological connections at ease for things to happen. You may not know what to do next, but we as trained professionals may need your knowing, and your  persistence to keep us trying at those specialized tools we have been trained with. We may not see who, we may say what. We are also human, we have burnout and lives outside the facility we work in. We have regulations we have to meet, standards we have to go by and sometimes mindless, time consuming paperwork that has to be done to keep our jobs. We have our own children, worries, burdens outside work. You may have to push us beyond those things. We are not experts on your child, you are. We are experts with our own tools. We may be dressed nicely, neatly,  use correct terminologies and introduce you to new techniques, but you need to introduce us to who your child is.

I have one story left. When I was about 23 or 24, I worked with a psychotic, retarded 28 year old woman. She spent most of her time twiddling her fingers, not seeing people or hearing them (her vision and hearing were fine.) as they spoke to her. She lived with her parents and her mother primarily took care of her. She had no outside activity or companionship. This 28 year old woman had many “stories” or fantasies that she continuously ran through her head (thus the reason for not attending to others). After two years of Music Therapy, it finally surfaced (also by this time she greeted, spoke with and attended to others around her) and no social training, just work on her “stim”, she revealed to me that she was angry. She was angry with her mother, although very connected to her, because she was a 28 year old woman, dependent on her mother. That was who she was and that was a normal, appropriate response for someone 28.

Each and every person, diagnosis, several diagnosis or no diagnosis – “You have seen one of us…you have seen one of us.” We are each individual and unique.

 

     “Today you are you, that is truer than true. There is no one alive who is youer than you.”    Dr. Suess

 

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