Archive for the ‘prognosis’ Category

My own 5-year old son Lyle recently expressed an interest in playing the violin.  Having played violin and viola myself growing up, I was absolutely thrilled.  I signed him up for some private lessons and rented violins for both of us.  For a few weeks, I’ve been relearning to play some simple pieces of music and he has loved listening and learning the little things I can teach him while we waited for our class to begin.

His first lesson was last Monday, at a reputable music school here in Chicago.  I sat in and observed.  His teacher moved fast.  She was intense. She wasn’t “mean”, but there was no small talk, no friendly chatter.  She moved right into work on posture  – holding the instrument properly – and told me that he wouldn’t pick up the bow for at least 2-3 weeks.  She spent the full thirty minutes on a sequence of movements required to move from “concert rest position” to “playing position”.  Each time Lyle moved his arm into a correct position he also accidentally moved one of his feet a step and had to start over from the beginning.  It was a bit like boot camp and hard to watch, but I was impressed that he stuck with it and cooperated so beautifully.

However, the instant she told him he was finished, he rushed across the room, fell into my arms, and sobbed.  She didn’t address this, simply let the next student into the room and pushed us quickly out the door, Lyle still crying.  He cried all the way to the car, raging at me, saying he never wanted to take another lesson, never wanted to go back.  He asked if he could keep his violin, but I told him we couldn’t keep the rental instrument if he didn’t take lessons.  I assured him that we could find another teacher, however.  Much to my shock, by the time we got home he told me determinedly that he would go back.  I was simultaneously impressed and appalled.

All week I grappled with this.  Was the teacher too harsh? – or is this the way you teach a young child a challenging instrument like the violin? I don’t remember starting out that way, but perhaps I’ve forgotten.  A friend told me it reminded her of early ballet lessons, in which you must master the positions before you can dance.  But shouldn’t she have established some sort of rapport with him first, made a connection with the child? – or was I applying what a good therapist does to a different situation, one that doesn’t necessarily require it?  She was teaching him skills and he was capable of learning them with repetition, I saw that.  But was it meaningful to him? No.  Was he motivated to learn from her? No.  So how could it be different from a negative therapeutic situation, then?

In fact, although he was determined to continue so that he could keep his beloved tiny violin, I watched my son struggle more and more as the week went on.  His anxiety grew more with each day, and his behavior became extremely controlling and defiant.  He wanted to be in charge of every conversation and everything anyone asked him to do.  The closer we got to the second lesson, the less tolerable his behavior.  On Saturday morning, we had to leave a Halloween festival we’d invited friends to because he was acting downright belligerent.

I could see it quite clearly.  He was turning the tables on us, acting out exactly what he felt the teacher had done to him.  She had controlled every move he made for thirty minutes straight.  He’d never seen an adult act like that with a child.  Each time I tried to discuss it with him, he waffled painfully; on one hand, he never wanted to go back to that teacher again. “I HATE violin,” he shouted at me angrily, at least once a day.  On the other hand, he was asking to go back to her rather than another, unknown, teacher.  He didn’t want to give up that violin.

And I still wondered: Can he do it?  Should he do it?  Is this how he needs to learn?  Will he simply get used to her style?  Should he?  After all, we need to be able to learn from different kinds of teachers, don’t we? Do we pull the plug this fast, or give him one more week, especially since he says he’s actually willing to go back?

But I watched my son and saw how incredibly dysregulated he was becoming, and noted that it was worsening every day, and decided to cancel the lessons.   I realized suddenly that this is exactly the kind of thing I talk about at work all the time with families.  The violin teacher did all of the things I warn against in therapy:  she was introduced to a brand new child and immediately started drilling discrete skills (e.g., posture and movement sequences) without establishing any rapport whatsoever, without placing those skills into a meaningful context (e.g., music), moving too fast, and talking too loudly (not adjusting pace and volume to a child’s developmental level and temperament).  There wasn’t a word of praise. When he had a negative reaction to the session, she did not address or acknowledge it even for a moment.  And, thanks to these missteps, my child’s behavior took a huge turn for the worse in a matter of only 5 days, even with me processing it with him every day.  (Imagine a child with a classroom teacher, therapist, or aide who behaves this way towards him at school?  Think about the “naughty” behavior we’d be seeing!  What if a parent didn’t see it, and so didn’t know what accounted for his sudden change in behavior at home? All that I have described was observed after only a single 30-minute session with the wrong teacher.)

Maybe what my son’s violin teacher was doing is considered to be an optimal way to begin this particular instrument and some kids can learn that way, but my kid clearly isn’t one of them – and I simply cannot feel bad about that.  A good teacher or therapist of any kind doing individual work is going to assess a student long enough to figure out who this child is and meet him right where he is developmentally in order to move forward.  I don’t think that would’ve taken more than five minutes in this case.  This is exactly why I always do a free initial session with a new client: to make certain that both the child and the adult are comfortable with each other.  No therapist or teacher is going to be a good fit for every child.

Once Lyle knew he’d never see that teacher again, he was able to relax.  His behavior was back to normal within 24 hours.  I have a couple other violin teachers for us to meet with this week and he’s happy about that.  Maybe one of them will be a better match and we’ll continue on this road, and maybe not.  In the end, it doesn’t matter.  But one thing is for certain: we are not going to suffer through 8 weeks of lessons with the wrong teacher.  Lyle showed us very clearly how he felt about that.

Kids will tell us when they’re comfortable with an adult; it’s our job to listen to them.  Their learning depends on it.

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(This article in its original form was posted on The Family Room blog on May 27, 2007)

Susan asked an excellent question of The Family Room contributors recently: How do we as therapists talk to parents about a child’s prognosis?

Parents of children with autism spectrum disorder (ASD) sometimes ask, “What is my child’s prognosis?” and that is understandable.  As a parent, it is likely that I’d be asking it myself.   However, it may be as difficult for therapists to answer as it is for parents to ask.  For one thing, what do parents mean by “prognosis”?  Does it simply mean, “What will the outcome be for my child after all this therapy? What will his future look like?”  Or is it a way of asking, “How close to typical do you think my child will become? Will he eventually blend in with his peers more?”  I always ask families to bear in mind just how broad the range of “typical” really is; it’s a moving target.  Is your typical the same as my typical?  Is “quirky” as okay with you as it is with me? I like to think more in terms of, “How comfortably will this child be able to socialize, play, learn, and work with others?  How can we help him be his best self and be happy with who he is throughout childhood and into adulthood?”

The short answer is, we don’t know for sure. I do wish I had a crystal ball. I wish I could look a parent in the eye and say with confidence, “Oh, your child will be just fine.  Simply do x, y, and z like the Smiths did!”  But that would do the family a great disservice.

Over the years, I’ve occasionally started working with a child who appeared to have everything in place to make changes rapidly and yet the progress was slower than I expected or we hit unexpected plateaus.  Conversely, there have been times when I doubted in my heart of hearts how far I could move a child up the developmental ladder and then was happily surprised to see him gain new skills quickly once a few new strategies were in place.  Without a doubt, I am better at predicting this than I was when I started out as a therapist; experience makes a big difference.  But I can still be surprised, because children with special needs are as unique as everyone else, and each has to follow his or her own developmental path.  We often wish we had it ahead of time, but the child holds that map and the path is only shown to us gradually. This is as it should be, because in fact it has not yet been drawn.

What I can say to families is that I pay attention to a cluster of “good indicators” of a positive prognosis, which to me means that the child will have the best shot at growing to his or her fullest potential, no matter what the diagnosis or how old the child is at the time.

When a parent asks me, these are my top suggestions for a positive outcome:

1) Involved caregivers.  Now, hold on a minute!  You do not necessarily have to quit your job, no matter what the pediatrician suggested or that mom informed you in the waiting room at OT.  But you do need to be highly involved with your child’s intervention program.  You do need to make sure your child’s IFSP or IEP has appropriate, attainable goals and addresses your concerns.  You do need to know all of his therapists and what they are working on.  You do need to carefully hand pick any private therapists you hire and be as involved in sessions as you possibly can be.  Organize team meetings with any private therapists.  Have regular communication with them.  Ask lots of questions. Get terms defined clearly.  And you need to know what you can work on at home – and do it!  It’s a great deal of work to do this well, whether you are working outside the home or not, and there is no point in sugar coating that.

2)  Quality therapists. Another key to a positive prognosis is the quality of your child’s intervention team rather than the quantity of therapists.  You need to hear from the therapists on a regular basis; if you don’t see the therapist every week, be sure you are receiving notes or regular phone calls to discuss how things are going.  I’d prefer to see a child working with just a couple of excellent therapists rather than running around to see many different people who are working on different goals in different ways.  Because if your child is doing that, how on earth can you as a parent keep track of what each therapist is doing, and generalize the goals at home?  And also, isn’t everyone in the family stretched too thin?  In the long run, who does that benefit?

3) Quality, prioritized goals. When it comes to goals (just like therapists), my rule of thumb is “less is more”. It is far better for your child’s team to be working in a coordinated manner on a set of prioritized goals than to have them each working on their own set of many.  In the most effective team meeting I’ve ever attended, the parents asked each therapist to bring their top three therapeutic priorities for their son and share those. We found a great deal of overlap among disciplines and as a team our job was to choose 3-5 main areas that we would all focus on for the next six months.  It made a tremendous difference. It is not common practice yet, but school programs using the SCERTS Model are already doing this.  The entire team chooses no more than 8 goals for each child, and some of those goals are what we call “transactional supports”, meaning that they are goals for the child’s teachers and parents.

4)  A developmentally-based program. This cannot be stressed enough.  If I see a child with a therapeutic team that is focused on teaching only academic skills before foundational skills are truly in place (e.g., joint attention, referencing, reciprocity, emotion-sharing, perspective-taking, non-verbal communication skills), I won’t feel as good about the prognosis.  Perhaps he will succeed academically in school, at least for a few years, but his program has not addressed his social-emotional needs.  And believe me, when it comes time for your grown-up child to get a job, it is not going to be those discrete academic skills that pay off in an interview or help him keep the job.  It is going to be his ability to interact with others and work as part of a team.  Every child needs an appropriate program that meets him right where he is and facilitates his climb up the developmental ladder. It’s not that academic goals should be put aside completely, but rather that we need to look at a child more holistically.

5)  An integrated team.  Your child’s team, whether it is made up of public therapists, private therapists, or both, have got to communicate with each other and with you.  Caregivers must always consider themselves a critical part of the team. Team meetings are an excellent way to do this, although they can be challenging for busy parents and therapists to coordinate. (Most of mine end up as dinner meetings, either at the family’s house when the children are asleep or at a restaurant.) I have seen many families in Chicago set up a Yahoo! Group or Google Group for their child’s team, and this has been an excellent forum for therapists and parents to communicate notes, reports, comments, and questions.  These are private and you can have an email sent to you each time there is a new post; I highly recommend it.  A coordinated team is a committed team.  And a committed team is working hard on behalf of your child.  Therefore, integration of services will naturally lead to improved prognosis.

Every child is different.  But until someone hands me that crystal ball I am comfortable relying on these other factors.

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