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.

Last Day of Mini CHAMP

So, the last day has come and gone.  It started with a receptive language test, and I wrote down every area where he struggled, for us to focus on later.  These include things like:

• Prepositions: in back of, behind, in front of
• Sequential order: first, then, last, etc
• Understanding not/doesn't
• Pronouns: his/hers, and he/she/they
• Most/least
• Identifying words by their beginning letter sound
• Rhyming
• Same/different
• Together/apart

Whew.  I'll get a formal report of the language test in a few days, but it's just so interesting to me how he does so well with academic stuff (he aced the colors, numbers, shapes, letters, sight words, and even adjectives like biggest, smallest, longest, etc) but struggles so much with basic language.

He then worked on his goals of saying words that start with D and F.  He's doing so well!  I was given a report that states that in the first session he had 10% accuracy of his words beginning with D, and 0% accuracy of the words beginning with F.  By the end of the second day, with cueing, he was getting 73% accuracy of D words and 90% accuracy of F words.  Whoo hoo, go Kiddo!  I'll get a report in a few days of today's progress, so I'm looking forward to seeing the results of his overall progress.

He had lots of fun with the clinicians today, but his favorite game was collecting Angry Birds after saying his words to put on a parachute.  After he had collected them all, he got to make them fly, which he was so excited about, he started doing his marching dance while they were playing with the parachute.  :)

By the end, even though he was tired, he was counting with four and five both starting with an F sound, and Jodi and I, who were sitting in the observation room, were clapping and cheering together, haha.  Awesome, proud moment for both of us.

The exhausted Kiddo with Jodi (in blue) and his clinicians Michele, Erica and Courtney

Honestly, I had this moment during one of the sessions where I felt so overwhelmed and lost and I put my head down on the little table and wanted to cry.  To think that we're spending three days, three sessions a day, working on two sounds that he's been working on in therapy already for a while, and will need more practice on for a while, well sometimes it just doesn't seem fair.  He still has so far to go.  And I was thinking that he's getting as much therapy in these three days as he does privately in three months.  How long is this going to take for him to talk like his peers?  But whenever I feel that way, I try to think of the positive and how far he has come.   He's made 90% progress on his F sound in two days, imagine what it will be after three?  These ladies know what they're doing and I see the results.

In fact, in the elevator as we were going up to our hotel room a man asked him how old he was.  Kiddo said proudly "Five!" (with the F sound, whoo hoo!) And the man laughed. "Five?" he said. "Before you know it, you'll be twenty!" And Kiddo giggled at that.

And as if that didn't make me proud enough, when we made it back to our hotel, he proudly declared "I'm back!" a phrase they had been working on with him in day two.

I am so proud of all the hard work he and Jodi and the clinicians did.  I love CHAMP, but even moreso, do I love my little Champ who always amazes me with how hard he works to learn what comes so easily to others.  He inspires me.

Mini CHAMP Day 2

Day 2 is done!  The clinicians continued working on words beginning with D and F, making sure to incorporate them into short phrases as well.  Here's a few of those phrases:

Feet down
Four years
Five years
Fun time
Fall down
Fish fin
Food please
Dog eat
Eat dinner

Other phrases worked on, especially while they were playing their games include:

I like ___
High five
Thumbs up
____ please
Under _____
On _____
I found ____
Where is _____?

They also worked on using phrases starting with "I'm" today.

I'm (Kiddo's name)
I'm five
I'm hungry
I'm thirsty
I'm good

Here he is working with his three graduate clinicians.  They are all awesome and keep Kiddo engaged and working hard, but disguising it as fun.  He's doing great working with them.

Tomorrow's the last day.  His first session will be a receptive (comprehension) language test, because we know he has a receptive delay, it's just never been formally evaluated.  Then he'll have a half hour break, a session working on his D and F goals, a break for lunch, and one final speech session.  Sad to think it's almost done, but he's been working like a champ (pun intended) and making steady progress on words starting with D and F.  :)

Mini CHAMP Day 1

I have to start with a collage comparison of Kiddo age 3, and Kiddo age 5 exploring George Washington University campus before going to CHAMP.  Melts my heart, how fast children grow, and to realize that Kiddo was only a month or two older than Little Brother is now when he went to CHAMP the first time, well that seems crazy to me.

Kiddo, age 3.  July 2013

Kiddo, age 5.  July 2015

So anyway, we made it to mini-CHAMP (meaning it's a three day intensive, rather than a full week of CHAMP Camp).  I gave the awesome Jodi Kumar a hug, and then she and her clinicians whisked him off for an evaluation.  After the evaluation, we decided our goals would be to work on words with D and F sounds, as well as a list of words Hubster and I wanted him to say more clearly, including:

• Kiddo and Little Brother's names
• Computer
• I'm hungry
• I'm thirsty
• Banana
• Cereal
• Dinner
• Like/don't like

He has three sessions a day, so for the next two sessions they played lots of fun games working on those goals and some simple phrases, and Kiddo said "Fish" properly several times.  I was so proud I was clapping in the observation room, haha.  He also is saying "four" and "five" much clearer which also makes me proud.

Kiddo working on the F sound.  Jodi's on the left, clinician on the right.

Kiddo was so excited to ride the train and he was so cooperative during his sessions today, I was thrilled.  Jodi was commenting on how much personality he has now (he kept giving her hugs while she was working with him and she had to teach him the phrase "I want a hug" before he could get one, haha) and how much progress he's made since he was last there.  :)

Tonight Hubster and I are taking Kiddo to see the Minion Movie which will be a total surprise to him.  My in-laws are generously watching Little Brother for a few days so I can focus on soaking in as much as possible during the mini-CHAMP, which I am extremely grateful for.

Stay tuned for days 2 and 3 of Mini CHAMP!

Climbing New Mountains

I took Kiddo to Pump it Up, an indoor inflatable party zone.  This place is awesome, though the last time I've been there was when Kiddo was almost three.  Other kids his age were climbing on the inflatables by themselves, jumping around, having a great time.  But Kiddo wasn't able to do any of that.  I helped him up all the inflatables, went down the slides with him sitting on my lap, and left wanting to cry.  

It's been a few years since then, and we joined a friend of mine here for a play date.  Wasn't sure if he'd be able to climb everything by himself this time, but knew he'd have fun.  And he did.  

He did climb everything all by himself.

And he had a blast.

And I left with a smile on my face and my heart beaming with pride.

He may still have a long way to go, but times like this reminds me he really has come a long way. :)

Thumbs up for Pump it Up.  :)

Climbing every (inflatable) mountain.

The giant slide.  Love the face plant toward the end.