Predicting the future of special needs kids

At 17, Mel has been one of the lucky ones.  No shunt difficulties-yet. During her most recent developmental assessment, the nurse indicated that; as Mel has had no signs of shunt malfunction, the next period of concern, for shunt malfunction, would be at age 22 years.  In other words, if Mel follows the current data, her shunt should continue to work with the highest probability of a shunt problem next occurring at age twenty-two.  Facts like that just tend to stick in my brain.  I pray, Mel will continue to beat the odds of shunt failure. 

The next week, we had our final neurological visit.  MRI was completed.  A five-minute physician assessment completed. Then, the neurologist indicated Mel could now be followed by an adult neurologist.  He recommended that we contact one in the next two years.  I once again breathed a sigh of relief.   Special needs parent know the feeling that washed over me.  That ability to sit back and relax.  The leaving of tension you really might not have even known you had: Shoulders drop, head rests back, breath in and a slight smile might escape.  When it comes to neurological status Mel has been lucky.  For this I am eternally grateful. 

As this was the neurosurgeon that put in Mel’s shunt I commented on what a good job he had done. He smiled and then we chatted a little more.  After a brief period, I recalled that he had indicated seventeen years ago that Mel’s shunt would last forever.  Yes, this was probably an off-handed “yes, it will last forever” to a smart remark I made.  A remark, possible to get me to shut up.  Physicians never promise “forever”.  Seventeen years ago, he was younger and probably a little easier to tease into such a remark.  Seventeen years wiser and seventeen years later, he got that deer in the headlight look. Special needs parents also know that look. The look that says, how should I respond?  That short moment of silence, one second too long.  He was probably trying to access the possibility he would ever make such an unprofessional remark.  He was possibly assessing how wrong such a comment would have been.  No one can predict the future.  I know that and so did he.  I was glad when his face lightened and he stated, “Well, sometimes I get it right”.  That was a safe answer.  It was time to change topics.

This leads me into my experience yesterday.  I was helping out at a local developmental clinic.  A beautiful six or seven-year old was sitting by her mother.  The parent and therapist were discussing the assessment that had been completed.  The mother was obviously distressed and trying to processes the information being provided. The young child bouncing in her seat, completing a Barbie puzzle.  I paused a moment.  I once was that mother.  I had been in her shoes so many times. I could relate to her posture.  The feelings of being lost in a conversations I did not really want to have.  As their discussion was coming to an end I overheard her ask that question all special needs parents ask, “What does this mean for my child’s future”…..   The therapist gave that same pregnant pause I had often experienced with such questions.  I recalled the look I got just a few weeks earlier from Mel’s neurosurgeon. 

Such a loaded question.  A question all of us ask – over and over.  The web is full of parents attempting to prove the medical and educational community wrong.  Rarely, in fact, never, have I reviewed a blog or article that praised a medical professional for correctly predicting the future. That is, for correctly predicting the status of a child five or ten years down the road. Special needs parents tend to get the worst case scenarios.  Or that is what sticks in our brains at the end of conversations.  Listening and memory can becomes so selective.  How many times have I gone into an assessment and left totally unsure of what the results were?  How many times has one stupid fact haunted my nights?  We have all spent countless hours researching for a better answer. Sometimes, it is found.  Sometimes, it is not. 

That brings me to the question at hand.  Do assessments, whether cognitive, motor, educational, or whatever tell a parent or medical professional what is going to happen in the future?    Unfortunately they do not.  😦

I have spent the last few weeks trying to figure out what is the predictive validity of assessment tools typically used in today’s clinics.  Predictive validity is the extent in which one test or score predicts the tests or scores on a later assessment.  In simple terms, predictive validity might tell a person how accurately a test administered by a therapist, teacher, diagnostician predicts future skills or test scores.  You know what, I can’t find much.  There is information about what the test measures. Information on the accuracy of the tests to do this or that, but little on its ability to predict the future.  Was I expecting the tests to be a crystal balls?  Probably not.  I did expect to find more information on how specific tests administered, say 3 years apart, reflected similar results. 

In my brief research, I have found that, in most tests, the predictive validity are usually not very high.  .30 to .50 seem to be acceptable standards.  I would love for a few of my therapist or education, blogger friends to step in here and give me additional data…… 

I found tests and retest results for low-income children that seem to show accurate predictive validity. I found that an infant’s visual skills appear to be a somewhat, acute reflector of future potential.  I have found that some tests have parts that accurately predict certain scores at a certain time. I.e. this test at 8 months has a high probability of predicting this specific skill at 8 years in this specific population.  I found most of the articles confusing and beyond my understanding.  Disappointing, yes.

This inability for a single test to tell a parent their child’s future is not surprising.  Nor is the fact that special needs parents ask such questions. We are all driven to try to predict the future.  We are all driven to collect facts to help us find the path that will lead our child to attain our dreams.  For a path to get us off the road of special needs parenting.  It is ok to have such hopes and dreams. 

From what I can tell, the medical community is attempting to more accurately report test results.    I have found the following statement on many assessment that I have recently reviewed.  “This test is an indicator of the child functioning at this point in time and does not reflect future potential” Or “The following test scores are not a reflection of future skills but a reference point to be utilized to document skill gains”.  This statement is probably a result of some law suit or some insurance mandate.  It does however, possible help parents understand what a specific test result is actually telling them. 

So how does one know what to expect?  How does one know what the future hold?  Unfortunately, no one can answer that question.  Research suggests the more prevalent a disorder; the higher chance one can assume future skills.  Parents of children with Down Syndrome have their own developmental scales.  Research most disorder and you can find data on the percentage of kids with that disorder who have say seizures or cognitive delays.   In the past, when I was at Spina Bifida Conferences, I often looked around to see what adults with Spina Bifida were like.  Did they walk, use wheelchairs, have jobs, have kids, and/or have a college educations?  My thought was, if they can do it, so can Mel.  Thanks to all those who do take the time at such event to sit down and speak with the new parents.

I’m not saying there is no hope in trying to beat the odds.  I am saying any professional who tells you this or that will certainly happen may have questionable credentials or other motives.  It never hurts to ask for what is called “evidenced based data” to support such statements.  A simple, “Where do you get your information”, may be needed.  It is also ok to try new things. To try methods not yet proven by the hundreds who have come before us.  I just hope the participating parents are fully informed of such treatments. 

Back to the question at hand.  How to increase the predictive odds?  One way to help a parent understand future outcomes is by combining past facts, past tests, past information and looking for trends.  If your child is tested and then six month later retested and is closing the gap, the probability is higher that your child will beat the odds.  Closing the gap does not mean getting more raw score points.  It means increasing the standard or scaled scores on a test.  If several tests administered give the same results, then there is a higher chance the tests are correct, at that time in your child’s life. If your child has participated in this or that procedure for years and you have never seen any documentation of progress.  It is time to speak up.  To ask Why?

In Summary, kids are too different for one test to give a parent all the information they need to predict their child future skills.  There are too many variables, even in kids with the same disorder.   Time and trends give one a more accurate picture of what the future might hold.  Unfortunately, that is not what I or any parent wants to hear. That is certainly not what the parent of that beautiful six or seven year old wanted to hear. 

I would love to hear from anyone who has more information of tests and predictive validity. 

 

 

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2 thoughts on “Predicting the future of special needs kids

  1. My friend, you hit the nail right on the head with this post! You sure have a way with words and a way of cutting through the muck and getting to the heart of the matter.

    Two experiences to share.

    1. Once our pediatrician FINALLY did the genetic testing on my son who turned out to have Down syndrome, he said, “I see Noah going to college, living in an apartment, etc. etc.”. Wow. Really? He failed to mention the only apartment Noah would probably be able to live in would be over our garage with a lot of help from us, and the only college he would likely be able to attend would be a program specifically designed for kids with intellectual disabilities – if we were lucky enough to have one in our state and could swing the hefty bill. So here’s an example of a doctor way overshooting the likely reality of his patient’s future.

    Story number 2: I lamented on my blog about Noah’s poor results on an assessment given by his new speech therapist and what i assumed that meant about his potential. That therapist happened to read said blog and emailed me to tell me very graciously that in no way, shape or form should I allow that assessment to influence any predictions about Noah’s cognitive ability, potential or future. He said it was just a standard test and Noah’s performance was due to a lot of variables having very little to do with his potential. A pretty good therapist for sure.

    Anyway, thanks for such an encouraging post and a reminder to not give in to any external limitations that may be tossed at our children. Our kids will have enough real hurdles to clear without others throwing imaginary ones in their path.

    Blessings,
    Alyson

    • Thanks for the encouraging words. Tesing is such a tricky business. It does give information but sometimes it only tells a partial truth. So many variables impact the future.

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