The Family Room

The Out Clause

Back when Isaac was about two and we were investigating additional interventions for him, I spoke to the representative of a local autism services organization. She stressed to me how important it was that I get Isaac into this particular type of program because, she explained, a child's neural plasticity is greatest before the age of three. So it was, in effect, a race against time, and every second wasted was a second in which Isaac's future would be forever limited. So we might want to sign up right this minute.

I hated that conversation: the implication that we weren't doing enough already (speech and OT), that this was the right program for a child she hadn't even seen. But most upsetting was this idea that at a particular point not long in the future, everything would be "cooked" and we had only a small window left to affect the course of our son's life. Tick, tick, tick.

Of course it was horseshit.

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Kindergarten has been a hard adjustment. Aside from the question of support (not nearly enough, and about which I hope to have an update soon), the sensory environment is completely overwhelming for Isaac. Twenty kids in the class, about 400 at the school, a huge playground, intercom announcements, assemblies, a loud, echoey cafeteria, and, worst of all, recess. In a word, school. Very much like my old elementary achool, when it comes right down to it, but a completely different experience for him.

He comes home exhausted, hyper, crabby. He has far more frequent tantrums, and they're longer and more intense. The pattern, for the past few weeks, has been like this: by Friday he's not doing much work at all, Saturday is a nightmare, and by Sunday morning he's happy again and goofing around the house. He cries Monday mornings, Tuesdays through Thursdays are a little better, and then by Friday he's completely spent. Do we have twelve years of this to look forward to?

Yesterday was rough. He had a couple of really long tantrums, one of which was prompted by the fact that I refused to let him watch Thomas the Tank Engine in the room in which his father happened to be sleeping. I said he could watch it in the front instead. "I want to watch Thomas in the baaaaack!" he yelled, and that was pretty much it for the next 45 minutes.

I tried to explain how Daddy felt: that he was sleepy, that he needed to rest. But I couldn't get through, and couldn't figure out whether it was because he didn't conceive of the idea that his father has feelings, or that he knew and understood, but didn't care.

Which is worse?

Maybe there's a third option: that he knew, but was too upset and emotionally drained to behave accordingly. That's a variant of the latter, I guess, and I think it's right. Once he started to calm down, I asked him why I had told him he couldn't watch TV in the bedroom. "Because Daddy wanted to sleep." He knew.

And so when J. and I are on the sofa at night watching movies but really thinking about him, we nearly always conclude with the reassurance that, after all, he's only five. It's our fine print. It's our "out clause."

He's just a little kid, we remind ourselves. This is just a phase. He keeps growing and changing all the time.

But one day soon he won't be little anymore. He's already bigger, stronger. More is expected of him: he has homework, for heaven's sake. So will we get to a point where that out clause is just an artifact of an earlier, more innocent time? Do we have to prepare to give it up one day? Or is that a betrayal of his potential?

What is the right balance between faith and acceptance?

Reply hazy. Try again.

Sometimes out of curiosity I check to see what Google searches have brought people here. Sometimes they're odd: "Superman potty seat" (um, that is one distinctly unpleasant image), sometimes they're right on target: "fire drill social stories" (Step right up. You've come to the right place) and sometimes they're poignant: "PDD + parents overwhelm," "autism prognosis". (Can I get you a drink?)

Google reminds me of the famous Magic 8 Ball of my childhood. I'd ask it a question, usually about some wispy-haired boy I was obsessed with. "Does Brian like me? Does he like me like me?" And I'd get my answer:

"Outlook not so good."

And so like me, parents continue to be drawn as if hypnotized to the spare white search box. It's usually the same question, phrased in a million variations: will my child be okay? And sometimes, well, here you are. Thanks so much for coming.

It's an up and down life here on the spectrum. We go from elation at news that our kids started a game with other kids at school, to worry that they're not getting enough support, to abject terror when we consider the gaps in their understanding.

I thought about this a lot tonight as I read first Jordan's, then Kristen's beautiful posts about talking to their kids about September 11. I thought about the conversations that I want (and probably, when it comes down to it, won't really want) to have with my son one day: about how his father and I met, and why I loved him at first sight, about sex and politics and how it felt to see my mother slip away from me too soon. About why people die, and where they go after death. About God and science and how people's brains sometimes work differently. Why that's a gift, and why it's sometimes impossibly hard. And how it can be that people feel the need to hurt themselves and others to make a point.

It's the great paradox of parenthood, isn't it: wanting to have the hard conversations, because the hard conversations bring new understanding and intimacy and maturity. Because they are part of the deal when you become a parent. Hard as it is, I want that for my son. I want that for us.

And so tonight I have this impulse to ask the 8-Ball--with the same sweaty, childish faith I had so many years ago--will it happen? Will we have those talks? And in my mind's eye I imagine the answer bobbing up from the murky blue liquid:

Reply hazy. Try again.

Some Thoughts on Prognosis

By Jordan Sadler, SLP

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.