Wednesday, January 23, 2013

the STAR center - our evaluation experience

yesterday was the day we took harrison to the STAR center for the first time - for his evaluation.  although rachel already flew out and evaluated harrison, this second evaluation at STAR is just part of their intake process.  they were pleased with rachel's report but wanted to dig a bit deeper and cover all their bases before creating a treatment plan for him.  so let me tell you about the day.

first of all, graham spent the night at meme and papa's house monday night.  he woke up there and got to spend the entire day with meme and her sister, jenny.  meme and aunt jenny spoiled graham rotten, as usual.  it was such a blessing to be able to spend the day with harrison and not have one single worry about graham!

harrison had a good night sleep, woke up, ate a good breakfast, and we left at 8:30 am for our 9:00 appointment at STAR.  harrison was excited to finally see the STAR center and was looking forward to playing in the big gym he's heard so much about.  he commented, as we were driving, that maybe they call it STAR because the zip line goes up really high.  :-)

juliana met us in the waiting area with big smiles.  i think harrison was happy to see her but his face didn't reveal it.  my mister stoic.  juliana had a colleague with her who video taped everything.  i was glad she was there because harrison seemed a bit unsettled (dysregulated) by her presence and by the video camera.  i hoped this would allow for a really good picture of how harrison "performs" while being dysregulated as opposed to being so familiar with juliana and, possibly, getting a "better than normal" result.

juliana laid out the plan for the morning - completing a workbook, having a snack, playing some games and then playing in the gym.  harrison agreed and we got started.  she took us all back to a small plain room.  harrison sat on one side of a table and juliana sat opposite him.  she asked him to do some workbook pages - mazes of different levels, finding hidden pictures, tracing and handwriting.  then they moved on to cutting out a paper fish, taping on a string (fishing line) and "reeling" the fish onto a pencil (fishing pole).  then she gave harrison four-step instructions about how to fold a piece of paper into the shape of a dog.  he had to listen to all four steps and then fold the dog by himself.  he did fine with that.  lastly, juliana gave harrison another piece of paper and gave him four-step instructions regarding how to fold it into a fish shape.  he did fine with that as well.  she commented that he is the only kindergartener who has ever been able to complete the fish.  i don't know if she was referring to kindergarteners who have been to STAR for evaluation or typical kindergarteners.  i'm curious to find out.

they had a little snack break - which really wasn't a break, it was still part of the evaluation.  she asked harrison to pour some goldfish onto napkins for himself and for her.  she also asked him to pour water from a bottle into two plastic cups.  they both ate their snack.  he seemed to do fine with that.   he didn't stuff all the goldfish into his mouth at one time, which would be something he would do at home, so i may have to mention that to juliana when we meet to discuss the results.  (stuffing lots of food into one's mouth is not normal.  i believe it's an oral seeking activity, if i have my terminology correct.  harrison does it and so does jeremy.  chipmunk cheeks are common at our dinner table)

ok.  moving on. 

they moved out to the hallway to do some games with a ball - balancing the ball on a spoon while walking in a straight line, a circle and a figure eight.  kicking the ball with his right foot.  kicking the ball with his left foot.  all different kinds of ball kicking exercises.  he had to balance on one foot, then the other, then with eyes closed.  then they moved on to jumping tests - jumping out and in (like when doing jumping jacks), jumping side to side, forward and backward and in a triangle pattern.  lastly, jumping in place continuously for one minute.  he seemed to do okay with most of these.  some of the jumping was tricky for him.

we headed into the novel gym at this point.  man, do they have some fun stuff!  of course harrison's first choice was to do the zip line!  he climbed up and zipped down, landing in a ball pit.  he had to dig around in the balls to find different objects - stuffed penguin, lobster and dog.  juliana asked him to choose one stuffed animal to ride back down the zip line with him.  he climbed back up with the lobster in tow and had to figure out how to squeeze the lobster between his knees while holding onto the zip line with his hands and make it all the way down into the pit without dropping the lobster.  he did it!

they did some other fun play things - scooter boards, swinging, balancing on huge exercise balls.  she checked his core muscle strength a couple different ways.  all of this was great fun for him.

she took him into the messy room next.  while there she asked him to smell and identify a few different things.  grape, cinnamon and lemon.  he couldn't figure out the grape smell without her help, the cinnamon one was a bit tricky for him, too, but he was able to do it after she gave him a clue, and he got the lemon one right away.  next she got out shaving cream and spread it out onto a mat.  he was not about to touch that shaving cream!  she prompted him by suggesting a game where he drew something in the cream and she had to guess what it is.  he got one finger "dirty" with the foam and continually tried to wipe it off.  he didn't like the messy room all that much.  but he didn't SAY anything about it.  hopefully therapy will get him to a point where he feels comfortable expressing his feelings!  they cleaned up the foam and played with the rice and beans table for a while.  he did fine with that.  then we moved on to the rainbow room.

harrison really liked the rainbow room and talked about it for the rest of the day.  he described it best by saying it's a room full of hammocks!  basically, the "hammocks" are all different colors.  they are anchored to the walls, one on top of the other, so kids can climb up.  harrison climbed right to the top and peeked his head out over the edge, calling to us to find him.  he had fun in the rainbow room.

lastly, juliana took us to the light room.  the light room held a room-sized computerized machine that had three towers (in a triangular formation) of lights.  kids stand in the middle of the three towers and play a game similar to simon (remember that game?!) except they have to use their whole body to run, reach for, and hit each circle that lights up.  and every light that turns on makes a different sound.  harrison played two rounds, the first with jedi/star wars sounds and the second with more of a classical music sound.  he did great both times but the musical sounds made it easier to judge where the light was coming from because low notes associated with lights that were located lower on the towers and high notes were associated with lights that he had to reach up for.  it was pretty neat.  and afterward he broke out into a random happy dance!  he might not have TOLD us that he liked the light room, but he definitely SHOWED us!

one interesting note about the light room:  juliana mentioned that this same machine is designed for, and used by, professional athletes.  the colorado rockies have one, for example.  i guess it helps athletes with reaction times (and probably a wealth of other things) but STAR has been using it, gathering input, and doing research on how it helps their kids.

by this time it was 11:00 harrison had completed the first portion of the evaluation.  he and i left to eat some lunch, chill out for a while and get some fresh air.  we got back to STAR at 1:00 for his auditory testing.   

the auditory testing was hard work for him.

lanie was the name of the sweet woman who gave harrison his auditory test.  she was calm, kind and encouraging.  i think harrison felt comfortable with her, which is good.  but he certainly was not as comfortable with her as he was with juliana.

the first portion of the test involved wearing headphones, listening and repeating.  lanie scored harrison as he repeated each word or phrase.  he seemed to do well with this.  she even commented that she would assume harrison is a great reader because of how well he did during this section.  and, of course, she would be right!  as the test neared the end, though, it appeared that he had quite a bit of trouble - sometimes not even able to repeat anything at all.  or just guessing.  it was clear he was getting tired (he was yawning).  it was afternoon time, of course, but i also think it was just really hard work for him and he was getting worn out.

the test continued on without headphones.  harrison had to listen to lanie and either repeat what she said exactly or repeat it backwards or only repeat back the first syllable or the last syllable or answer a question about what she said.  he seemed to do okay with some (not all) of this.  the later testing involved lanie reading a very brief story and harrison had to answer questions, some of which included inferring the reasoning behind what took place in the story - hard, hard, hard for him.  

after he was all done i asked if i could put the headphones on and try to repeat some of the more difficult parts of the test.  lanie played a couple sections for me.  at one point i was asked to repeat back both words i heard.  then two words were spoken at the same time, one in each ear.  it was hard to repeat them both back.  i tried three times and did not get any correct!  next i had to pay attention to what i heard in my right ear.  then two different sentences were spoken at the same time, one in each ear.  it was easier to focus on one ear and i was able to repeat back the sentence without any trouble.

lanie suggested that we have harrison repeat the sentence portion of the test.  she felt it should have been easier for him than it was given his performance on earlier portions of the test.  she thinks he either just hit a wall, was tired, or maybe didn't quite understand the instructions.  at this point they will score him just as he did, though.  i think that's the right call.

so that was our day.  we got home sometime after 3:00.  harrison was quiet during the drive home except to say that he wants to go back to STAR but next time he doesn't want to do any workbooks and he does want to take graham!  i was pleased to hear he would like to return.  it's nice to know he's excited about STAR.  he thinks it's fun!  he thinks it's special!  he feels privileged to go there!

and so do i.

when we got home i gave him a snack and turned on a video for him.  i took two tylenol, three advil, laid on the floor with my feet elevated, closed my eyes, concentrated on deep breathing, and tried to stretch out my back.  

the day was so stressful for me.

and not because they made it stressful.  everyone at STAR was - is - fantastic!  it's just the emotions that accompany a situation like this.  i felt as though i had run a marathon.  i felt like i had a huge adrenaline rush and then an equally huge adrenaline crash.  i felt absolutely exhausted.  

and it's not even the results that were bothering me.  because of rachel's evalutaion we already know quite a bit about our sweet boy and the help he needs.  so i'm actually excited to hear what they find at STAR!  i'm looking forward to hearing the results! 

so why, then, did i find myself tearing up, and hiding my emotional face from harrison, twice during the evaluation?  i realized it wasn't because i was sad.  it wasn't because i was stressed.  it wasn't because i was worried.  it was because i was so proud of my son! 

he did so well on so much of the testing.  he has so many strengths!  i wept for joy because of all the ways in which he excels.  i am so very thankful for them! 

and yet, even though i am able to see the good, it's hard to face harrison's weaknesses. 

it was stressful, even though i could see how well he did on some of the tests, to deal with needing to have him tested at all.

it was stressful watching him struggle to repeat words and phrases and sentences.

it was stressful being strong and being smiley and being brave and acting casual.

it's stressful telling harrison that STAR is just a cool place where he gets to play.

it's stressful knowing the truth.

it's stressful hiding the truth from my son.

and so i laid on the floor.  and i waited.  and i thought about it.  and i realized...

"the lord said to me, 'my grace is sufficient for you, for my power is made perfect in weakness.'  therefore, i will boast about my weaknesses so christ's power may rest on me...i will delight in weakness...for when i am weak, then i am strong."

our weaknesses are our strengths.

and the stress in my neck and shoulders and back and mind melted away.  and i got up off the floor.  and i kissed harrison's head and said "you are so strong, buddy."  

and i wept for joy again.

because of his strengths and his weaknesses.

and because of my own.  

**edited to add that i submitted an adapted version of this post to be published on the spd blogger network.

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