What's This?

Kiddo now asks "what's this?"  With those two words, a new door has been opened in Kiddo's life.  With those two words, Kiddo has now learned:

• what a scare crow is
• what those "Caution, Slippery When Wet" signs on the floor are actually all about
• how to use a toy he had never seen before at Grandma and Grandpa's house
• and what a tube of diaper rash cream is and what it's used for.

It's amazing how those two little words can make my heart burst with pride.  Because, well, he's always been behind his peers in speech and language.  I've gotten used to it.  It's all I've known for both of my boys.  But what makes my mama heart ache, is wondering what Kiddo wonders about but has no way to express.  I'm convinced Kiddo has a little engineer's brain in that smart head of his.  How many things does he not understand but wants to?  What things does he want to learn more about?  Is he even aware that he has these thoughts and questions, or has he gotten so used to just knowing the things he's told and that's it?  

I should clarify and add that Kiddo has asked questions other ways.  He'll say his usual words or phrases with that raised voice sound at the end to make them into a question.  For example, he'll ask "Go bye bye?" and I might say "Not right now," and he'll say, "Ok.  Later?"  So yes, he was asking questions before, but not using those question words like "who, what, when, where and why."

Well, things are different now. I now have two kiddos asking me the question "What's this?" and a journey of discovery awaits all of us.  I am beyond excited.

My cool, questioning dudes.

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.