Q&A: “Transitions and Emotional Processing” (Part III)

I am somewhat horrified to realize that two months have passed since I promised you Part 3 of the “Transitions and Emotional Processing” series I began last summer, but I see that Part 2 was posted the week before school started.  I can now safely say that it takes me two full months to get myself and my family into the school routine before I can get back on track!

If you didn’t read Part 1 and Part 2 (or need a refresher on them), I recommend going back to read those posts before reading this conclusion.  As promised I can give you some follow-up information about how the suggestions I gave goodfountain in those first two posts worked out for her daughter Charlotte.

The day after I gave her my recommendations, I received a copy of the heart-warming photo above, attached to the following email:

We went to a nature preserve today to walk one of the trails.

When it was time to get dressed, I started talking to Charlotte about how this was a place that was for shorts and tennies, not dresses and slippers.

She said, “Can I take it with me?”

And with the memory of your email in my head, I said, “Sure! You can take it!”

She went and found her backpack and packed her dress, her shoes and her necklace in it and carried it the whole time.

Not even a single whine about getting dressed.

The following week, I checked in with goodfountain again about how things were going and received more information:

What I am seeing is that I have to basically use ALL of these strategies and rotate among them. Carrying the dress in the backpack worked a couple of times. Referencing the little card with things to do when she feels angry has worked a few times. I haven’t had a chance to do any big feelings discussion, but I did make a list of where we can and can’t wear the dress. That helped some, for a couple of days, along with not ignoring the dress issue. I just bring it up right away and we tackle it head-on.

Another thing that has helped is giving her some good motivation. The other day I got no complaints from her when we went to return the guinea pig to school because I let her ride in the back next to the cage (I folded half the third row down and put cage there). She changed out of her dress right away.

It seems that the best thing is having an arsenal of things to try while we weather out the “storm” of these passing phases. She’s not going to be obsessed with a Belle dress forever, but she’ll move on to something else. And I’ll adapt the strategies. And eventually it will all sink in.  Having a variety of different things to try with her has made getting through the difficulties a lot easier.

This is an excellent point.  It is so helpful for caregivers, teachers, and therapists to have that “arsenal” of strategies to try when things get challenging.  No one strategy will work every time – we need to be on our toes and think flexibly in the moment.

I’m curious: what other strategies have you tried in a situation like this?

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Website Recommendation: Autism Games

Some of you may already know about the wonderful blog Autism Games by Tahirih Bushey, SLP, but in case you don’t, we’d like to send you on over to check it out!  There are some posts that are particularly relevant to many of our clients just this week – for example, “Being a Translater for a Child with ASD“, “The Ducks Go Marching Two By Two“, and “Eric and I Look for Mommy“.  There is also a fabulous piece that was posted on March 9 that is untitled and I was unable to link to it, but it’s a true example of what following a child’s lead in order to get engagement started.

I hope you’ll check out these and some of the other excellent posts!

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Intro: New Preschool Class

Originally posted September 12, 2008 by Jordan Sadler, SLP | Edit

Some of you have requested more information about the new SCERTS-based preschool class that my colleague and I just launched this week.  I will be happy to provide that, with ongoing updates.  Tonight I’ll give you the basic overview.

We have developed a small, highly individualized class called L.E.E.P. into Communication, and it is designed for a group of children ages 4-6 with social communication and emotional regulation challenges.  We meet five mornings a week for three hours a day.  My colleague is there all five mornings, I am there three days a week, and we have three Assistant Teachers who are there all five days.  In addition, we currently have a psychology intern from Loyola University and may get an intern from Erikson Institute and a speech/language intern from Northwestern University.  Our ratio rarely drops below 1:1.

In addition to having a Developmental Therapist and an SLP (myself) running the program, we have hired an excellent Occupational Therapist and a Clinical Psychologist to consult to the program once a month.  This means that they will visit, observe, and provide us with any additional suggestions and observations that would benefit the kids.  The OT and psychologist are both DIR/Floortime experts, with one of them being an ICDL Faculty member.  Beginning next month, we will also have a specialist coming to do music/art therapy with the kids once a week.

This being what I refer to as our SCERTS-based, DIR/Floortime-informed program, it is highly focused on both communication and each child’s social-emotional development.  It is also very family-centered.  Our goals incorporate the parents’ priorities and areas of greatest concern.  We present proposed initial goals to the parents and adjust them if necessary.  We spent 6-8 hours completing a full SCERTS Assessment Plan on each of the children, which included a great deal of video review from the clinic and the home (we went to all homes and videotaped the child for an hour in natural routines).  The parents are asked to meet with us for an hour every 6-7 weeks to review progress and discuss how things are going at school and at home, so we have a rotating schedule which allows us to meet with one family each week throughout the year.

The program is truly cutting edge in terms of its philosophy and guiding principles.  It is aligned with the most current and appropriate best practices guidelines out there for kids with Autism Spectrum and Related Disorders, and it shows.

From the minute the kids arrived on Monday morning, they were happy and relaxed.  We had the environment set up in a way that enticed each of the children into a regulating activity, whether it was a favorite swing, play doh, or animal puzzles.  We have visual aides everywhere you look, and use music and singing to help with transitions throughout the school day.  Kids take movement breaks in a ball pit, a resistance tunnel, on their choice of swings (e.g., boat swing, bungee swing, huge lycra) when they need to, and then re-engage with the group.  We also spent four days providing intensive training to our staff, which meant that everyone knew the kids’ needs, favorite activities, motivators, and how they expressed dysregulation as individuals (e.g., one child’s toe-walking is another child’s recitation of the alphabet) before they arrived.

Although we worked incredibly hard to prepare an envirnonment and staff perfectly suited to this group of children, we were still shocked at the ease with which the kids moved through these first five days.  From Floortime play to Morning Circle to TEACCH stations to lunch or art or cooking projects, the kids transitioned well and without any meltdowns.  Seriously.  No meltdowns.  I didn’t see or hear of one all week.  We took a lot of videos and photos!

Speaking of videos and photos, I’ve created an online group for the parents and staff of the program as one of our lines of communication (in addition to the daily notes we type up and hand them on their way out).  It’s been a great way to make announcements and share information with everyone this week, and tonight I put up a lot of photos for the parents.

I could go on and on (some would argue that I already have!), but these are the basics of what we are offering.  I’ll update you through the year about how it’s all going, but I will say that – judging by the progress we’ve observed just from Monday to Friday this week – we are going to see some kids whose development looks very different in June than it does today.

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An SLP’s Thoughts on Prognosis

(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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