Language Translation

Friday, June 10, 2011

When the Therapist and the Parents are the Problem.

Hey everyone.  Today I had an issue.  there was a reader who sent me some information and asked for my advice.  Their child has really been struggling with some issues, but not always.  Sometimes he does just fine, and other times nothing seems to work.  After thinking on the problem and feeling out the situation, it seemed very clear to me.  He is reacting to his therapist.

This was a hard thing for me to discuss with the family.  I know that therapists are not a dime a dozen, and finding one who can teach your child essential skills, while still submitting to the abuse given to them is very rare.  Yet, what to do when the therapist is the problem?

My first suggestion is to be open and frank about the whole situation.  I had a position where the family I was working with was a great family.  I had some personal issues with the mother and with the way some of the things in the home were going.  I became the problem for the child's development.  My own issues, which had nothing to do with the child, became the catalyst for meltdowns, stress, tantrums, and many other things.  Finally, I knew I either had to speak with the mother, or find another position - I was causing too much harm to this child that I had already grown so attached to.

I spoke with the mother one day and just told her what I was feeling, and why.  She was so anxious to help her child, that she was willing to hear me out and hear about what I was concerned about.  We spoke about things, about her desires for progression and to see her child achieve the things she new her child to be capable.  I talked with her about her child's need for a different approach to the therapies we were doing.  It was not an easy talk for either of us, and I was very emotional.  But in the end, it was a very good talk and we were able to discover ways to work around our differences.

Now, does that mean every situation will be that way?  No.  But I do know this: A therapist who has emotional baggage that is affecting your child will not be able to truly help your child.  There may be temporary improvements, or even life-long learned skills, but your child will carry with him the feeling that what he does is more important than who he is.  He will forever associate his outward accomplishments as his measuring stick for whether or not he is able to be loved or cared for.

Do not let yourself feel overwhelmed.  I believe that most of the things that are issues can be taken care of with an open discussion and conversation with the therapist.  Your child needs to be the one calling the shots.  Most children, especially the non-verbal ones, are so anxious and eager to grow that they push themselves far more than any therapist ever would.

I wrote on here before about my experience in my piano lessons.  I learned to read music, I learned to make my fingers do what I wanted them to do, I learned the keyboard so well that I could sit down and close my eyes and put my finger on the correct note without feeling around or guessing.  But I was doing what was required of me and nothing more.  At 6, when I was able to quit my lessons, I kept playing the piano at home - but I played what I wanted to play.

When I was 9 years old I heard Beethoven's Piano Sonata in A flat, Opus 110, 1st movement.  I listened to it.  Then I listened again.  And again.  And again.  I couldn't get enough of it.  I told my mother I wanted to learn the piece.  She called a sheet music company and ordered the music.  The lady on the phone asked if the music was for my mother, she told her "no, it's for my daughter."  The sales clerk began to comment about the rigors of college as a piano major, and my mother stopped her and said, "Oh, no.  My daughter is 9."  Then the clerk tried to talk my mother into buying a more simple piece, this piece is too hard for a 9 year old.  She will never be able to play it.

My mother was insistent that she wanted the music.  So the woman shipped it out to us.  It arrived about 2 weeks later.  I took it and sat down at the piano instantly.  By the end of the week I had the first page memorized, and it just went on from there.  This piece was a never-ending source of comfort and strength for me.

My old piano teacher heard me play some of this piece once and remarked at how she had never been able to get me to play and practice like that.  She then commented that I must have an incredible teacher to be able to bring those things out in me.  My mother told her that I was my own teacher.  She was in disbelief.  There was no way I had taught myself that piece, and had learned to play it with so much passion and feeling.

I do not remember how to play all of that piece anymore, my fingers are so out of shape after 13 years without regular piano use, that I doubt I could even make it through the second page (where the runs start).  I do remember how it made me feel then, and how it continues to make me feel today.  I remember the feeling of being able to pursue music the way I knew would be best for me.

My path did not look like the path my mother had outlined.  It did not look like the path my teacher thought I ought to be on.  But that is okay, because it is my path.  They got to outline their own paths.  I should be able to outline mine, right?  Or, as I grew, I came to learn that I should let God outline my path.  Either way, my point is that I could not grow into the pianist I longed to be with the strict arm of Mrs. R*** guiding my musical education.  She and I did not work well together and the progress I may have made with a teacher who did work well with me would have been wonderful.

With or without a teacher, I was able to do what I wanted to do.  I didn't need a teacher to tell me how to play what I could feel.  I needed a teacher who could guide and strengthen and help me find ways of channeling the talent I already had.

The same holds true with therapy.  You might find a therapist who is able to get your child to tie his shoes, and that is wonderful.  But what if he is wanting to focus on learning to speak?  Which would you rather have?  If your child is able to be in charge of his own therapy, it will go much faster and the rate of growth will astound you.

I have been working with my current family since May 9th of this year.  In one month's time the little girl I care for has begun to undress herself, climb in and out of her booster seat at the table and her car seat, making more complicated sounds with her mouth and even babbling when interacting with us, she has begun to show signs of physical strength and coordination at a rapid rate, she is able to communicate rather well with basic signs and gestures now.  She is interacting almost the entire day with her family and with myself.

All of those things are new since I have been here.  She has progressed more in the last month than she did with all of the therapies and doctors and medication over the last 3 years combined.  I am not touting myself here.  What I am saying is that if we will let these children do the things that they are trying to tell us they want to do, they will grow at astronomical rates.

This family has watched amazing growth.  It would not surprise me if she were able to form basic words in a matter of 4-6 months, maybe less....this is something the doctors told her mother would never happen.  But this little girl wants to speak so badly.  She is working so hard, sometimes pushing herself so hard that she is about to collapse from exhaustion.  But she doesn't care, she just wants the silence, that acts as her captor, to be broken.  She wants freedom to express the millions of things that are swimming around in her brain.  And all of the other therapies take twice as much energy from her, because she is so excited about learning to communicate.

Instead of expending energy on learning the things she is excited to learn, she was expending energy on the physical things she was told to do, the things which took twice as much energy from her because it was working toward the wrong goal - at least in her mind - and she didn't have the drive and the heart for it.  As soon as we focused on her mental development, her physical happened automatically.  She does the things she should do with her therapy when we are playing - they just occur naturally rather than forced.  It has become a place of learning and growth.

Your child needs more than tools, he needs the right therapist who sees his potential and can listen to him as he tries to do the thing that is the most important to him.  Are therapists like this easy to find?  No.  But they do exist.  Keep looking and praying.  Always the way is opened when we ask for it to be so.  Maybe you needed this information first.

I hope this helps.  It is a very touchy topic and I know some of you are just grateful to have anyone, anyone be willing to work with your children.  The idea that the therapist is not good for your child would be one I would not be able to face, at least immediately.  There may be other avenues you can embrace that will help you find the way to help your child.

All I know is that I did not want to play piano while taking lessons.  But once the force and external control ceased, once I was able to choose my own music and work on it, the piano became my best friend again.  I may not have learned to play the things my teacher or my mother thought I ought to learn.  I learned far more and played far better than my mother ever expected me to.  I knew what I was capable of, but I couldn't just tell them.  No one would believe me that I knew what I needed to do.

Sometimes the therapist is wonderful and does things exactly right.  Sometimes the therapist is more harmful than good.  Sometimes the therapist is nothing but harmful.  Sometimes the teacher really is the problem, not the student.


I am adding an update as I have recently had a very lively conversation with two women I respect deeply.  One is a new friend who has shared quite a lot with me over the last little while.  The other is a very dear, old friend who I have known since we were in orchestra together in the 7th grade.  Both have valid views, and I did leave quite a bit out of this post as I was speaking with a specific few problems in mind...namely mothers who felt trapped with some rather abusive therapists.  They didn't think there was any other option to help their children except to put up with the cruelty of these therapists.  They all expressed the thought that the therapist must know more than they do and it must be okay.

Therapist: WEll, as a therapist who works for many different schools, for many years, I work for the children. I do my best for them, I see them as individuals and what can help them most. In my experience, most of the time it is the Parent that is the problem. Like you said, "She was so anxious to help her child", because of this many many many parents through out the years will baby their child with needs, they will indulge, coddle, accommodate, and reinforce bad behaviors. There are always two sides to the stories, but it is best to have meetings go to meetings and always communicate with the team. Yes observe and yes learn, from each other, so good things can be reinforced at home and at the schools. I think the title of the blog should state when Parents and Therapist communicate and become a team.

Mother: Team efforts are important and you may be a more reasonable therapist. We are not saying ALL therapists are problematic. Some are amazing. But I see you're perhaps not imagining what it is like for some of these families who live it every day. Therapists can have a tendency towards arrogance and a lack of respect for the family as a whole. I've been stating for years that families with the most challenging issues need way more help...not way more criticism. Start imagining your world becoming as a living prison and be more understanding towards some of these parents. Some parents may not do very well, true, but they are perhaps completely overwhelmed. If you, the therapist, does not live with more affected child yourself...should you really be judging the parents? Maybe it's time for looking at how the entire family dynamic is being harmed by terrible pressures. I am really of the mind set that it is time to start helping the kids and the families. It will be no point arguing with me...I live it and intimately know too many loving families stretched beyond human capacity. I will not tolerate parents being made scapegoats. Arrogance is a big problem in the system. Don't judge people who are living with persons with autism, if you do not live with a more affected person. It is outrageous. Support and understand. These people are doing the best they can. Disclaimer...there are always unreasonable parents...but parent intolerance will get all of us nowhere. Bottom line...they need support too.

Therapist: Would any therapists be working in schools if they did not support and understand. AND YES, most therapists (including me) work in schools because family and or friends have special needs. And YES everyone is doing the best they can. And maybe people also need to be kind and support the therapists also as much as the team supports the parents because they do understand and do live with it also in many cases. Maybe look to see what the therapist knows and who they have in their lives. That is why it is about communication on both parties not to just understand the parents or just understand the therapists, IT IS to become a team become a united.    Along with what was said above, most therapists are therapists not only because of children they have with disabilities or family members, but also (including me) have had to go to therapy (speech, occupational, physical) and overcome many challenges.  
 Let us not forget Helen Keller. If it weren't for Anne Sullivan who taught her correct behaviors and how to communicate she would not have learned. Anne Sullivan was truly the miracle worker, she was the teacher and therapist. She was there for HELEN! It is not about arrogance it is more about Gratitude for both parties. 

Me:  You both make very good points, and I'm sorry I left out perspectives of both parents and teachers.  I was writing this from the perspective of the child and thinking that I know I am unable to work with a family if I don't work well in the family dynamic - as a therapist-ish person, I am expendable, but mom is not. I think I wrote in there what I did to sort out the issues of one of my families, but if not I was certainly thinking it and will go in and revise. ALL sides of this are important - the child who has no escape until given tools, the parents who are daily praying and crying for their children, and the therapists who submit themselves to the abuse of the children and even the abuse of the parents when things aren't going as they would like them to go. There are many WONDERFUL, heart-filled, sweet, constructive therapists out there and you, [Person1], I'm sure are in the lead of the best of them. I don't know you as a therapist but we have been in each others lives for what, close to 20 years? I have the greatest respect for therapists. This was in response to mothers who have written to me, described shocking behavior from their therapists and then asked what they were to do because they felt this particular therapist, while horrible, was their only option. I was just trying to let them know that their hands are not tied unless they want them to be.

Therapist: Yes Tara, yes there are absolutely options. That is why, in the school system, parents are given Parental Safeguards. This is to help them and help them know that if there is a particular therapist that is horrible they do have options. I do believe every state has the Division of Developmentally Disabled (DDD) and they can service the children in the homes for any of the therapies, and I know schools can also work many things out. But the main point is that the parents, teachers, and therapist need to be a TEAM, they need to work together in unity for home and the schools. The IEP Team, or family plan team must communicate concerns, they need to treat each other with kindness and gratitude. I do feel sad when team members, who are there for the same reason, aren't seeing eye to eye but it is good things are brought to light. It's good to share thoughts and opinions because we can learn from it all and gain loads from communication, visiting, and gratitude.

Me:  Both of you women, are on two sides of the same coin with the special needs child locked in the middle.  Below is my general response to mothers and therapists everywhere...not just you two women.  Some of what is below both of these women do recognize and apply very well already.

As I stated in my blog, open and honest communication is really the only solution.  If that can't be there - whether it is the parents or the therapists fault really doesn't matter.  Who is to blame is irrelevant.  The point is, are we caring more about whether our own perspective is seen as the correct one, or about the person in the middle who has no voice to give his perspective?

When I have a problem with a family, I speak openly with them.  If there can be no consideration from them, then I remove myself from the situation - not because I am right and they are wrong, but because a rift between mom or dad and therapist is damaging and progression is stopped or damaged. The child is the important person and, as much as this may feel like a kick in the gut to some parents, if they would release and forget their pain then there could really be some progress as (both the above therapist and myself agree) parents and therapists work in tandem following the lead of the child's spirit...not his childish behaviors, but the eternal being in him that is inherently endowed with the wisdom he needs to know how to become who God intended him to be.

Therapists should have support groups - I'm covered in bruises and do the dirty work that mom doesn't want to do.  From a therapist perspective, many times mothers are wanting miracles worked with their children, but want someone else to do the work while they reap the benefits.  This is against the law of the harvest, we do not reap what we do not sow.  In my opinion, if mom is not in the trenches then when she begins to complain about the problems she see with the trenches, she really only has two options - get in them and go to work yourself, or be open to the idea that there is more than one way to skin a cat.

As the mother, when working with a therapist I have to either respect that therapist or find someone else if issues cannot be resolved.  Both side are at odds and fighting each other.  Once again we are brought back to the question of, "Who's the real enemy here?"

The enemy is not tangible. It is not a person and it is not a specific therapy. The enemy is an idea, neuroses, and pride.  Watch out, or between the two sides of the coin they may just rip each other apart and break into pieces the very one they are trying to save.

MOM YOUR ENEMY IS YOUR PAIN AND YOUR PRIDE AND IGNORANCE. 

THERAPISTS YOUR ENEMY IS YOUR PRIDE, YOUR APATHETIC ATTITUDES TOWARDS HOW HARD PARENTS ARE TRYING, AND TIME.  

FOR BOTH OF YOU THE ENEMY IS THE IDEA THAT "I HAVE THE BEST INTEREST OF THIS CHILD AT HEART AND YOU DON'T."

True communication is the only way to heal these rifts. If we are busy fighting each other, who is fighting for the child?  You say you are mom, but underneath all the fighting, you are only fighting your fear, not championing your child.

And you say you are therapist, but underneath it all you are only fighting for acknowledgement that you are doing all you can and the parents should not criticize one who is working so hard for their child and doing the things that they, themselves refuse to do.  Our greatest enemies are intolerance, ignorance, blame, and blindness.  Let us instead be open, educated, empathetic, and visionary - for if we want these silent ones to open, this is what is required.

I just saw a bunch of posts from "Mother" on FaceBook.  Most of it is below in the comments section.  Then I found this and though it the appropriate finish to this conversation.


Mother:  After getting out all I had to say, I'm ready to say that I am sorry that your friend and I misunderstood one another. We are both passionate about our parts in the hope for children. Please put this on the blog, Tara. It is not often that I say I'm sorry. I stand by my thoughts but I'm sorry that perhaps two people on the same side came at it wrong. But...debate is cleansing. I made assumptions, though, that I shouldn't have. That I'm sorry for.

"Mother" I couldn't agree with you more.  I have spent many hours with both of you...you more recently (giggle, giggle), and I know you are both on the same side, fighting the same fight I am.  Each of us feels a desire to help and serve and protect these wonderful people.  My friend by being a wonderfully trained, educated therapist with a heart of gold.  You by being a protective, gigantic redwood that we can not only hide behind when the world is too much, but come and rest and find shade and peace under.  Me, by giving a voice to those who are unable to speak.

We all want the same thing, to have those we love treated with the dignity and respect they deserve as children of God.  I will, in the future, try not to let my ability to pick up on all the emotions gushing out overwhelm me.  I will also try to remember that when speaking generally, you are not speaking of me specifically.  I will also try to remember that truth has many shades and the goal is to dig down deep underneath it all to discover the real truth - God's eternal truths - by stripping away all that man has layered on top of it; be they layers of prejudice, ignorance, apathy, greed, intolerance, or whatever form it may come in.  Truth is the goal.  And the truth is, we all love these precious people and willing to give all that we have and are to help them in any way.  The truth is that we three, we love...we love deeply.



*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.*

3 comments:

  1. I think I want to say that because I didn't real Tara's final sort of pulling it together response, this is a response directed to the therapist on our conversation. Tara, in this instance...I must say that I don't even think pride or pain is involved with either me or your friend who is a therapist. I think we have two people seeing things from a different vantage point who probably don't disagree though we look it. I have to say that I have no doubt there are good people in districts and everywhere else. Let me make it very clear to your friend that if she is among those, I am not speaking about her.

    However, making a general statement that parents are given safeguards! NO...could not be more incorrect.

    Many school districts are using trickery and out right dangerous practices on these kids. It is happening all over the country and they are lying about it. Isolation, allowing self injury and other abuses. There are very disturbed people in the system and parents must watch for this. Your friends district could be really good. I wouldn't doubt that.

    But all must maintain that very disturbing things are happening. I brought suit against many public and private agencies and had proof. My son's case was very serious and it was brought about because many parties sought to let me know who was boss, using my child to do it. Your friend must be careful when addressing parents because she may not know what they have been through that is very real and valid. Again, she may never be party to such things or be in an area where it would never happen. But it is happening and it is known. Recently there was a big issue in Washington over it...Isolation and improper restraint in the American schools pertrated against special needs children. I'm sure it can be found on line.

    My child was one of those kids.

    I am an extremely diligent and loving parent. It was done as a show of force. I took pictures and thank God had evidience when I discovered what was going on. Isolation and allowed headbanging. My case setted.

    In my area there are a lot of problems with ABA therapists forcing normalcy and exiting kids who cannot become indistinguishable. Families are ripped to shreds because they are told they are at fault that there kids are still showing signs of autism. Recovery is a lie. I'm sorry. There is no debate for me but I do know that therapy done correctly and with love/respect can do wonders for these kids. I've no doubt that if the therapist I am communicating with here is Tara's friend, she is a good person and therapist. And I'm sure she has dealt with unreasonable parents. I'm sure some are.

    I think that I just want parents who have had bad experiences to have room to talk about them and warn other parents. That is how we will keep these kids safe.

    If the therpist commenting to me truly loves these kids, she will have to agree. Maybe she didn't know that terrible abuses are taking place. I understand.

    But the acknowledgement must be made that it is happening.

    And...many in my area have experienced terrible arrogance from ABA therapists. It is disgraceful. I can disclaim that my son has also had two amazing private schools for kids with autism that have been the most blessed people on earth.

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  2. Perhaps making clear that I admire and respect all who provide support for these kids and their families with dignity and love are the most blessed in my eyes. But I have to speak out against all that is wrong. As I told Tara, it is my lot in life to protect the physical bodies of these kids and to support loving parents who are, in fact, getting beaten up by the system. It is happening. There is so much good. But there is so much darkness. And all of it is not about parents in denial or parents unwilling to work. Some cases are very difficult and the parents in all human capacity cannot do it alone.

    I'm asking for acknowledgment of these factors and the right as is God given and by my country to have freedom of speech. It does not in any way mean I wish to diminish good people. I sing there praise and I'm not kidding. There are people in my son's life who are incredible. And my strength at exposing those who sought to harm him with my determination to get him the services he deserves are what did it.

    I want only to give other parents their strength to find therapists like Tara's friend.

    So...in the end...what I'm saying is that no good therapist or any other professional in the field should take any offense when parents like me give warning. Those that harm do all the good people a great injustice as well. And they harm children and families. I've experienced it and I've seen it in many others. My area is quite bad. We have serivices but the "high functioning" get the greatest amount. It is sick.

    It is about money and percentages and prooving some theory...redoing Lovaas. Um...that is so over. We all need to move on. If Tara's friend is an ABA specialist, again, don't take offense...I've seen good people doing ABA and I've seen bad. I know both sides and I have to help parents figure out how not to let their kid fall to the bad ones.

    I hope all this clears it up. I don't want to argue with anyone Tara is dear with. Or TARA! But for me this argument has nothing to do with pride or pain. It is knowledge and first hand witness that I am basing it on and I simply want these kids protected from it. My final words are that my family could not survive without the wonderful therapists, teachers and caregivers in our lives. Would not survive. But all the more reason to separate out the bad!

    I think your friend has a right as well to say her mind if she feels parents are undermining her work but I feel that parents are very abused by the system and many might react as me but not say it out loud. I've watched so much abuse ladies and seen so much suffering. I see it still. And daily I give all my energy to helping parents rise. And they need every ounce of encouragement they can get. So...I want both of you to know, my outspokeness is something that has come from this system and is needed by many families who don't have caring people around their kids.

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  3. The 2 above "anonymous" comments are copied and pasted from the post that was the back and forth between the two above women. This is from the mother.

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