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Saturday, December 10, 2011

A letter to school personnel...

I began writing the following as a letter to some of the school personnel that work with Josiah.  he has been struggling with his adjustment to public school as I have mentioned before.  After I had written this, I realized it was far too long and not concise enough.  It also repeated much of what I have already said in our various meetings.  The school is truly trying to learn how to work with my amazing and sometimes challenging little man, and for that I am very grateful.  Thankfully Gonzo's school situation has been wonderful this year.  he is in a high support classroom, the second year now for him in this setting with these teachers, and things are going very well.  So my focus now is Josiah and how he and public school education are getting along.  So this is what we have been working with.  As I put a lot of thought into this letter, I wanted to share it as others who are struggling with a child like Josiah or in a similar situation might find it helpful:

So here is the original letter, which I later shortened considerably for the actual sending:

I want to thank you for all of the efforts you are making in getting to know Josiah and learning how best to meet his educational needs. A and I have reviewed the video from late November that was sent home, and we have shared it with Josiah.  The frustration and helplessness that the adults are feeling is as palatable as the frustration and helplessness that Josiah is expressing.  So my heart does go out to you.  As a former preschool teacher, I DO understand how challenging and exhausting it is to have a child that is different in the classroom, and how hard it can be to find a way to deal with troublesome and disruptive behavior in a way that is edifying and educational to both the other students and the student who is struggling.  The actual tantrum behavior is something I have seen in smaller ways before at home, but the aftermath that he exhibits at school is brand new to both A and I.  As we do not see it at home and it was not seen at Prospect, it is my understanding that it is something that he has developed as a way of dealing with his current situation at school.  It is the sign that something is wrong.  He may not even know what it is, for him something is wrong and so he reacts.  Everything I have learned about child development both from my time as a preschool teacher and in my studies as an adoptive parent says that Behavior ("good" & "bad") is ALWAYS a form of communication--figuring out what he is communicating and how to respond correctly is the challenge.  This behavior is very problematic and distressing for everyone involved--the teachers, the other students, his parents and he himself.    It is not as simple as 1-2-3, it is not going to be something that makes complete sense, if it was, then we would all have been able to determine what the behavior is saying and respond in an appropriate manner by now. 

A simple example of behavior as communication comes from the first few months with Gonzo.  He did not know how to read his body signals.  He would start running around like a crazy man, throwing things on the floor, biting furniture or people, and laughing hysterically for no apparent reason (one of the reason he went through 5 different foster homes before the age of 3).  He was communicating distress to us, he KNEW something was wrong he just didn't know what it was so he had no way to tell us.  Through trial and error, we discovered that he would do this intense acting out when he was thirsty.  So when he would start this communication, we would get him a drink and say "Gonzo I see that you are feeling uncomfortable.  You must be thirsty."--every single time that a drink stopped the behavior we reiterated that he was "thirsty"  and a drink would fix it.  Over time he learned that what he was feeling was called thirst and to fix it and feel better you get a drink.  Many foster parents and potential adoptive parents wrote him off as a "wild animal" and impossible child all because they did not delve into understanding WHAT he was trying to communicate. (Literally half of Gonzo's problematic behavior stopped once he learned to identify thirst and hunger--such a simple basic need, so easy to meet).  Some may have perceived that to give him a cup of juice when he was acting like a maniac was "rewarding bad behavior", when in reality it is an attempt to treat a distressed human being with respect and help find out what need is not being met, and to meet that need.  Did it happen with just one or two rounds of offering him a drink and helping him name and understand his distress? NO, of course not, it took a couple months of consistently doing so with a slow decrease in behaviors to get to the point that he could read "thirst" signals in his body and ask for a drink BEFORE acting out. 

Josiah is trying to communicate something, and it is something that he himself does not understand, or else he would have told us as he has a great vocabulary and a good sense of his body and himself.  As I have seen some of his tantrum behavior before and concur with the social workers, psychologist and his pediatrician that the temper tantrums are a direct result of him being developmentally delayed in a number of areas, the tantrums themselves, while problematic and needing to be turned into a more appropriate expression of frustration, are actually not out of the ordinary for a child with his issues and development. Some of it stem from frustration about not being able to do what most other children his age are doing.  Perhaps the reason they are so much more intense is that prior to this year, he has always been around more children with a range of development and special needs as well as typically developing kids, and here he is beginning to see that he is different AND is perceiving that as a bad thing.  He talks about being different a lot lately.  He is beginning to talk negatively about himself as well, which is brand new as he has always had a strong sense of pride and a strong positive self esteem.  You all have been doing great work in trying to understand how to appropriately handle a child whose emotional and social development is significantly lower than his peers, and have made good accommodations to help manage his needs at his social emotional level.  I know that for many of you this has been a challenge, as you are unaccustomed to working with children with as many varied special needs as he has, and the wide range of development that they can exhibit, both above and below their chronological age.  In some ways Josiah is on target (like his ability to learn the sight words, and pre-reading skills), in some ways he is above what is expected (like his sense of humor and his ability to read people's emotions even when they are trying hard to hide them), and many ways behind (like his frustration tolerance, his expression of emotions, and his ability in self-care tasks).  It is inappropriate to treat him at only one developmental level because he has many strengths and many weaknesses, in a wide range of developmental levels. 

If you are not understanding why his frustration tolerance is so low, I ask you to look inside yourself and actually DO the following:  stand up, lock your left arm to your body so you can only use it at about 30% function, fold your left thumb into the palm of your hand so it has almost useless, turn your hips so that your knees point towards each other, bend your knees slightly and point your toes in and your heels out.  Now walk across the room like that--try to use the bathroom like that, try to carry your lunch, or get something off the table, or sit down and write a letter.....try to deal with the basic frustration that he has just in moving through the environment (without cheating), just try it for 15 minutes.  And if you are really trying it (and if you truly want to have a better understanding of him, I really suggest that you try this in earnest), you will find that it takes a great deal of energy, focus, and frustration tolerance just to BE.  Now add demands on yourself, add the fact that everyone around you thinks nothing for getting up and using the bathroom, add in that everyone else is writing their name, and you are struggling to get your body in the right position to be able to even scribble on paper.  Imagine that you are expected to be like everyone else, when there is no possible way to be like everyone else.  Your peers can all put their coat on without expending a lot of physical and emotionally energy, they can change their clothes with minimal assistance, they can put the pattern blocks on the paper in the pattern where they want it to be without having to position and reposition central trunk muscles just to pick up a block and place it and hope that it actually gets to where they are trying to put it.    If you can not understand his frustration tolerance, then you have not tried at all.   I do this about once a month, and have since Josiah was a baby so that I can figure out HOW to do what I am asking him to do--it is a LOT more difficult than you think.  He can not do normal, everyday tasks in the way that other people do--AND he has always been self motivated to find a way that works for him.

I know, you are saying "But Heather, do you think we are dumb?  of course we understand his physical limitations and how much he struggles, it is obvious!  We are concerned about BEHAVIOR, not his physical abilities,  We already accommodate those very well!"  Before you get defensive, please understand that I know that you can see it, you are doing a great job in meeting his physical needs and accommodating for those needs.  I also know that you are trying hard to understand it.  I think some of you are struggling to understand how his physical limitations and the delays that stem from them correlate to him throwing a temper tantrum because the car picked him up instead of the the bus or because his name was not picked from the bag to be morning helper or why he throws a fit when a "simple" task (like pattern blocks) are brought out (he can not always get his body to do what his mind sees).  He feels powerless in an environment where it appears to him that everyone else has the power to choose.  He feels that he has no control over his life.  His temper tantrum are the direct result of him feeling so powerless, so different, and so unable to be seen as the amazing person that he is. 

He deals with more frustration every moment than all of the other kids in the class combined, and that is even before anyone does any work or makes any demands on him.  BUT it is his lot, he HAS to learn HOW to deal with greater frustration because these limitations that he has are not going to get better over night.  He needs to find ways to recognise where he is differently abled, and not focus on being disabled.  He needs to understand his strengths and be guided to use those strengths to compensate for his weaknesses. He needs to learn that he does not have to be like all the other kids to be liked by the other kids. He needs to learn to be okay with not being able to write his name right now, he needs to stop comparing himself to other children, and to see that he does belong. He needs time to be himself with other children and form friendships so that he can see that being different is okay. When other kids get their paper up the wall because they colored in  the lines, and he can barely color in the right area, he feels like he does not belong.  When the board only reflects "perfection" as perceived by the teacher, at something that is physically impossible for him to do, it tells him that he does not belong.  It would be like a teacher giving every student in the class an award for something that they do perfectly, but not finding any award to give him because he can not reach that teachers perception of perfect in any area.  That tears a lasting hole in a child's heart, a pain which is remembered into adulthood.  Linda mentioned that Josiah likes to see his name up.  Some may think he is "spoiled rotten" or just "seeking attention"--so quick to think about the problem child--but it is a child that has a problem.  Seeing his name helps him feel like he does belong.  seeing that even though he is different, that he is supposed to be there and be included solves some of the problem that the child is having.  So thank you Linda, for seeing his need for a visual reminder of his acceptance and belonging, and doing something simple to help meet that need. Things like that help build up his confidence and thus reduce the feelings of powerlessness, which in turn lead to him being more flexible about the way he wants things to be and thus reduce the chance of a trigger that will lead to a tantrum.  It is a multi step process to reduce the tantrum behavior.

Now---the aftermath of the tantrum (the swearing, the name calling to adults, the calm exterior with the angry, "wanna be a bad boy" attitude), that is the behavior that has intensified since starting Kindergarten, and I have not worked a lot with it, at least not at the level and duration that he exhibits there.  At home if he gets angry and pulls an attitude, we first use humor to diffuse the situation--which works about 70% of the time.  We often  talk about the fact that its okay to be angry, everyone gets angry,  but it is not okay to be mean or be a bully, and discuss other ways to handle anger.  We talk about how he would feel if someone was saying those things to him, or if he would want someone to scratch or bite or hurt him, and how it makes the other person feel.  Usually he is upset that he has hurt or scared the other person, and says that he does not like to feel that way OR to make anyone else feel that way.  Sometimes he will persist in saying that he IS going to be mean and  is going to be a bully.  Usually we diffuse this with a silly wrestling tussle, pretending to each be the bully, which is probably not appropriate at school, but a quick tickle might be a good substitute.  There have been a couple of occasions where humor, talking, silly wrestling/tickling has not gotten him out of his funk.  So then I just give him space and let him work through it in his head, which is sometimes what he needs to do.  We all need space sometimes after we get upset.

In general, the tantrum are about need--communicating something that he is lacking or a need that he does not know how to verbally express.  The aftermath of the tantrum speaks to him trying to reconcile his own behavior with what he is feeling.  In many ways I am more concerned about the aftermath of the tantrum than the tantrum itself.  Given his social/emotional developmental level, and his level of frustration, the tantrum make sense.  And a way reduce the tantrum is by figuring out what the underlying cause is (not the direct cause necessarily, but the underlying need) such as: 

1) reducing some of the things that he perceives as frustrating (perhaps an adaptive technology evaluation would be a REALLY good idea to reduce the frustration he has surrounding his lack of fine motor ability--I can submit a formal request if you would like. (also like all people--children and adults--if he is hungry, thirsty, or tired he has a much lower threshold for frustration)),

2) helping him to have more self esteem and confidence that he does belong (like putting his name on the board and giving him a fixed job that he can do that will help the class and increase his sense of belonging),

3) giving him a better sense of control in his life (giving him choices rather than commands, acknowledging his efforts at things like pattern block, which he may see how to do but have trouble getting his body to put where he is trying to).

I am sure there are other needs that he has that he may, at this developmental level, express inappropriately by tantruming.  But those three needs --reducing unnecessary frustration/building up frustration tolerance; helping him find his place in the school; and giving him a sense of appropriate control--can be worked with to reduce the number of episodes.  Without the tantrum, there would be none (or very little) of the behavior that he exhibits following the tantrum.  As you find things that work, DON'T try to go back to old ways, stick with what works.  Pushing his buttons to see if they are still there is counter productive.  Perhaps we should discuss an official modified curriculum if you feel the curriculum itself is a problem or the way the curriculum is presented.  He may do well with a good computer based curriculum (supplemented with worksheets and other lessons with the general class), such as he one we used when we pulled Gonzo out of a Kindergarten situation that was not appropriate for him.  We used  Something similar may be a potential modified curriculum as it could be accessed both at home and at school, if it would help to keep him on a successful academic track while supporting and managing his emotional/behavioral needs, and helping him build up the social/emotional strengths he will need as he progresses.

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