The Evaluation

The Evaluation

As the new Neuropshych evaluation approached, Billy and I tried to prepare ourselves for the test results.  We were trying to be optimistic, but also trying to be realistic.  We reminded ourselves that regardless of what the evaluation told us, it wouldn’t define Coleman.   We promised to remember that he is more than just results on paper, more than just a standard score.   And that while many of the loveable traits we know about Coleman may not show themselves in the test results, it certainly doesn’t mean they don’t exist.  But we hoped, really hoped and prayed, that those traits did come through in the tests. 

For this evaluation, I again accompanied him in the room for the testing.  The doctor was very nice, very gentle, and she was good at giving him time to focus which sometimes can take time.  It was hard, I’ll tell you, to keep my big mouth shut.  I had to almost think about other things, the urge to reach over and help was so strong.  At one point, the Doctor showed Coleman a picture of a wrapped present, and asked him what it was.  He was staring and staring at it, and I was thinking  “Present.  Say present” but instead I quickly said (out loud) “What do we bring when we go to a birthday party Coley?!” and the doctor looked at me grimly.  “Leading the witness” I think she wanted to say, and I apologized and shut my mouth.   There were a few other instances like that, when I just couldn’t will myself to keep quiet.  “He knows this one, I know he does” I would say, trying to persuade her to let me help.  I am a nuisance, and they will unlikely let me in again for future testing. 

Anecdotally, I thought Coleman did well on some parts, and not so well on others.  He performed best in clear, concrete language skills and manipulative tasks, and struggled in anything abstarct or fluid.  For example, when he was asked to identify pictures, he started out strong:  house, ball, swing…  But then the pictures became a little harder, and he lost some of his steam.  Like on the word present.  In his defense, he really doesn’t like presents.  J   He was shown some action pictures, and asked what the person was doing.  Action words using “ing” is something Coleman is not consistent with so I was on the edge of my seat as he went through them.  “Running.”  “Swimming.”  “Sleeping.”  He got through several of them, and when we was shown “Skiing” and he got it, I jumped up and yelled “YES! GOOD JOB!” before I got the evil eye again from the doctor and sat back down.   

As he moved from basic expressive language to a more fluid expressive language, he started to stumble.  He was shown a picture of a cup and asked what is was.   “Cup” he said.  But when asked “What do we use a cup for?” he could only respond “drink.”  He understood what it was for but did not have the language to say “We put drinks in it” or “We drink from it”.  Similarly, he was shown a spoon, was able to identify it, and knew what it was for, but lacked the ability to put the words together to describe the action “We use it to eat.”   His understanding – vs. expression – of abstract language was also on shaky ground.  The doctor handed him a toy car.  “Can you give me the car, Coleman?”  He gave her the car.  She put the car and a small truck on the table.  “Before you give me the car, can you give me the truck?”  But he gave her the car. 

Coleman performed well on manipulative tasks, like puzzles, which he loves, and matching objects by one feature (i.e. color or shape).  But again, if the tasks became more complex (sort by two feature, i.e. give me the round, blue objects) he became confused (i.e. he still gave all the blue objects, not just the round ones).  And again the more abstract the test, the less well he seemed to do.  For example, when shown a pattern of “red/blue/red/blue/ __”, and asked what came next, he would say “red.”  But in a pattern like “Heart, Heart, circle, square/ Heart, Heart, circle, square/ Heart, Heart, circle, __” he struggled to come up with square. 

In other testing, he was asked to replicate small structures with blocks.  The doctor would stand two pieces side by side, and then place one across the top of them, like a bridge.  She would give him three blocks and say “Coleman, can you make this?” and point to her blocks.  But Coleman only lined the blocks up side by side.  She took them down and pointing to hers, asked again “Can you make this?” and Coleman took the blocks and lined them up side by side again.   She asked him to imitate her, and she put a little object on the end of spoon lying flat on the table, then pressed one end of the spoon so that the little object bounced upward.   She put the spoon back, the object back on one end, and said “Can you do it, Coleman? Can you make it bounce?”  But Coleman just picked up the spoon and the object and handed them to her.  

The evaluations took place over three different days in an attempt to give Coleman as much time as needed to ensure we captured his capabilities accurately.  I talked to Billy when I came home each day, saying that I thought he did ok during the testing, but noted that the testing was meant for much younger children, and even with that, it wasn’t like he aced them.  I would say “Yes, I really think he did well.”  And ten minutes later I would say “I don’t know.  I think he did poorly.”  And then again, “No, actually, he probably did fine.”  Billy would take a deep breath and say “Don’t worry.  He did fine.” 

But by the time we went back in for the feedback session this time, we were less anxious.  We were resolved – we cared most about our plan, most about where to go from here.  We knew without them telling us anything about the testing, that here was not where we would remain. 

Our advocate came to the feedback session, and she, along with Billy and I and the two doctors who had done the testing, all sat around a big table.  One of the doctors inched a box of tissues closer to us as she began.  She initially spoke about how sweet Coleman was, how he had a lovely connection with me (J) and how he had some nice developing skills.  But after the soft introduction, she got right down to business.

·         Coleman exhibited weaknesses in his foundational social skills such as eye contact and joint attention.

·         Most of Coleman’s speech was comprised of scripted phrases or stereotyped language. His speech was also characterized by unusual prosody and atypical intonation patterns

·         Coleman became fixated on certain topics

·         Coleman exhibited a very short attention span and was typically able to complete only one or two testing activities before requiring a break.

·         Coleman’s stereotyped behaviors have become so entrenched and pervasive that they are significantly affecting his functioning.  

It was quite depressing.  She presented his test scores.  For tests with a percentile score, scores in the 25% to 75% range are considered within the range of a national sample.  Coleman’s percentile was less than 1% in most areas.  And for tests with a standard score measure, scores in the 90-109 range are within the average range.  Coleman’s standard scores with scattered in the 20-50 range.  In sum, his age equivalent was 32 months, about the same as it was nearly five years ago.  On several measures he had actually regressed from where he had been at that time.  We thought we had prepared ourselves for bad news – we had certainly talked about the “what if” scenarios…but in our hearts we had hoped for good news, and so we sat disappointed and quiet for several minutes.  But unlike 5 years prior, our silence was short lived, and we quickly turned the focus on to the future and held a lively, collaborative discussion about what do to next.  The recommendation was unanimous:  Coleman needed to move to a different school.  He needed a placement urgently, in an intensive program designed specifically for students with ASD and ID. 

We left the meeting with our first directive:  to notify Coleman’s school of our intentions, to let them know that placement was what we wanted to discuss at the upcoming IEP meeting, and to inform that we had assembled an outside team to help us assess what would be best for Coleman.  Full disclosure.   I didn’t leave that meeting sad or upset – I felt empowered.  I felt like it may be late, but it’s not too late.  I was ready to fight.  Finally.