Evaluations, Numbers and Labels, Oh My!

I have a love/hate relationship with evaluation reports.  I devour every word that these reports say, eager to know what they have to say about my child, what goals are recommended to work on, etc.  I make copies for his other therapists so they're all on the same page (pun intended) and working on similar goals, I keep them in a binder so I can go back to them once in a while to make sure we're working on those goals at home or we've made progress on them or finally met those goals, etc.  But I hate seeing the numbers.  The numbers are always discouraging and are not helpful for my desire to keep positive.

Kiddo got his report from his time at mini-CHAMP.  The results:

His apraxia is still categorized as SEVERE.  Yeah, why that need to put it in all caps is beyond me.  Plus, how long are we going to be in this severe range?  Nancy Kaufman told me that generally kids spend anywhere from 1-5 years in each range (profound-severe-moderate-mild) until they are resolved.  At this rate, we're going to be in speech therapy until... forever.  Or maybe it just feels like it.

His receptive language is at a mild delay.  At first I was like, yippee, two years ago it was considered mild-moderate, so to be squarely in mild is good right?  (That's my positive personality kicked in).  But then I saw the percentile.  7%.  Say wha?!?  To me, mild means it's not that noticable/significant right?  But if 93% of his peers understand more than him (and I know they do) than that's not mild in my book.  And while I know Kiddo has made lots of progress in his understanding, his neurotypical peers, who are already significantly ahead of him, have made a lot more.  Talk about not just discouraging, but overwhelming.

I hate percentiles.

I hate seeing the numbers.

I like when they say things like he's smart, sweet, cooperative, etc.

I like when they say he's made a 94% improvement on his D sound and a 97% improvement on his F sound.  Things like that are encouraging.  And true.  I have the paper that proves it and I am so proud of Kiddo's hard work and progress at mini-CHAMP.

Those darn reports don't really define my children.  They don't capture their personalities.  They don't capture the hard work and frustrations, as well as the little victories and the progress.

Maybe what I mean to say is not so much that I hate the reports, but I hate the labels.  Kiddo may have severe apraxia and a mild receptive language delay, mild hypotonia and dyspraxia, a severe hearing impairment in his right ear and sensory processing disorder and who knows what else, but he is the smartest, sweetest kid I know, and that is what matters to me.  And Little Brother may have sensory processing disorder and either a severe speech delay or a mild case of apraxia, but he is the funniest, snuggliest, cutest little guy I know and that's what matters to me.  And those things should be what matters to everyone else too.

CHAMP Camp Eval

Nervous.  Excited.  I felt like a kid again, on the first day of school, excited about speech camp, unsure of what to expect, uncertain if I'd make it to the right place on time without getting lost.  The kiddo was oblivious to all the day's adventures, but I had high hopes for all that we would learn at camp this week.

Kiddo loved riding the metro to George Washington University in DC--what 3 year old boy doesn't love trains?!  The walk to Camp was HOT (about 4 blocks from the metro), and finally we arrived at CHAMP Camp.  Whoo hoo!

I sat in a cubicle observation room and listened to kiddo express every sound and word he was capable of, and even more for a full hour and a half.  They were wonderful at making it fun, but also getting the info they needed for his assessment.  I still don't have the results yet, they said they need to score them, but I am hoping that this eval will be THE eval that tells us if he does have apraxia. 

Below is the ah-maz-ing Jodi Kumar, the creator of CHAMP Camp herself (in white with long dark hair), Katie, our graduate clinician who will be working with the kiddo during the week (in white and black) and Courtney, another graduate clinician.  

Puzzles, trains, and blowing bubbles, oh my!

Stay tuned for details about our first day of camp tomorrow!