Susan asked an excellent question of the Family Room contributors recently: How do we as therapists talk to parents about a child’s prognosis?
Yes, parents do sometimes ask, “What is my child’s prognosis?” and that is understandable. As a parent, I am sure 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?” Although the latter is a perfectly fine (and understandable) goal for one’s child, I always 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, and learn 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. I always begin my answer to that question with the “I don’t have a crystal ball” response. And 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!” But I can’t.
Over the years, I’ve occasionally started working with a child who appeared to have everything in place to succeed and yet the progress was slower than I expected. Conversely, there have been times when I doubted in my heart how far I could get with a child and then was happily surprised to see him gain new skills quickly. Without a doubt, I am better at predicting this than I was when I started out as a therapist; experience makes a tremendous difference. But I can still be surprised, because children with special needs are as unique as anyone else, and each has to follow his or her own developmental path. If only we had the map ahead of time!
What I feel I can say with confidence is that I pay attention to a cluster of “good signs” for 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 is or how old the child is at the time. I’m sure we all have different internal criteria to determine prognosis, depending on the way we look at and think about the children we serve.
When a parent asks me, these are my top concerns:
1) Involved caregivers. Now, hold on a minute! You do not have to quit your job, no matter what that mom told you in the waiting room at OT. But you do need to be very 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 hand pick your private therapists and be as involved in sessions as you possibly can be. Organize team meetings with therapists. Have regular communication with them. Ask lots of questions. And you need to know what you can work on at home – and do it! It’s a lot of work, whether you are working outside the home or not.
2) Quality therapists. Another key to a positive prognosis is going to be 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 getting notes or regular phone meetings 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 (see #1)? And also, isn’t everyone stretched too thin? In the long run, who does that benefit?
3) A developmental program. Yes, this is closely tied to #2, but cannot be stressed enough. If I see a child with a therapeutic program that is focused on teaching skills without foundational skills truly in place (e.g., joint attention, referencing, reciprocity, emotion-sharing, perspective-taking, strong non-verbal communication skills), I won’t feel that the child has as good a prognosis. Perhaps he will succeed academically in school, at least up until 3rd or 4th grade, but not socially. And believe me, when it comes time for your grown-up child to get a job, it is not going to be those 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. Without an appropriate developmental program, his future success will be tremendously impacted.
4) An integrated team. Your child’s team, whether it is made up of public therapists, private therapists, or both, must communicate with each other. Team meetings are an excellent way to do this, although they can be very difficult for parents to coordinate. I have seen many families in Chicago set up Yahoo! Groups 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’ve been asking for, I’m going to have to rely on these other factors.