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.  :)

Progress Report

*Little Brother*

Sensory:  We got Little Brother evaluated by an OT for sensory processing disorder.  He has it.  Sigh.  His sensory issues are related to vestibular movement, especially when going from sedentary to movement oriented tasks or vice versa.  For example, after he's been sitting for a while, if he stands up and starts running, sometimes he'll fall forward and land on his belly.  It's not like he gets hurt from it, he just gets back up and keeps going.  This also explains why he pauses for a few seconds after he's gone down a slide (it's because he still feels like he's moving.)   I was told by the therapist that he's very impulsive, which is a thing you see in kiddos with sensory processing issues and behavior regulation.  So basically, we're teaching him how to handle being told no (currently his reaction is major temper tantrum and trying to do whatever we told him he couldn't do) to help him become more stable emotionally.  I feel like all we're doing is seeing more temper tantrums and my patience is so very thin right now.  I had no idea that impulsivity was sensory related, I thought it was more personality based.  He also has extremely poor visual tracking.  So, now he and Kiddo get OT at the same time and I love both of their OTs.

Speech: Words and phrases are coming!  This little guy has so much to say.  I've had one therapist say she's sure he has apraxia, and two who think it's just a severe delay.  The more I hear new words, and an improvement of old words, the more convinced I am it's just a severe delay, or if he does have apraxia it's definitely mild and nowhere near as severe as Kiddo's.

New words and phrases:
Ok (said all. the. time.  Especially when being disciplined, though within minutes he's doing again what he was doing before)
All clean
Stomp stomp roar (when he stomps his little feet, than hands out as he pretends to be a dinosaur)
appy juice (apple juice.  Sounds so much like he's saying happy juice I jokingly called it that for a while.  But once he started asking for it all the time, we got rid of it all.  No more happy juice, bud.)
Oh no!
Aww man
Pete Cat (his fav book, Pete the Cat)
Teetee on (Tv on.  When he wants to watch TV)
Kitty cat
Ocdoput (octopus)
Doo doo doo (what the rooster says)
Hew pwee (help please)
Moowee (movie)
Pa pie ee chit (french fries and chicken.  his fav thing to eat)
Zitza (pizza)
Chut (church)
Amen! (after our prayers)
Wet  (especially when playing in the pool or bath)
Mama baby (when pointing out a mother and her baby, especially in books)
I know (his response when we tell him "I love you."


*Kiddo*

Speech: Kiddo is totally blowing me away with all the new words and phrases and sentences (yes, for real, sentences!).  Every time he's done with a speech therapy session his speech therapist raves about how much he is saying and that she is understanding what he saysand how much clearer he is.  Other people are beginning to understand him too, so I don't need to translate for him all the time. I wish I had kept a list of all the new words or phrases, but here's the most impressive ones I can remember off the top of my head:


I love you Mommy.  (My all time favorite phrase.  Took me 5 years to be able to hear it).
Big Hero 6 good movie!
Touch Mommy nose.
Microbot (from Big Hero 6)
Bug fly.  Daddy do this. (demonstrates swiping motion Hubster made to shoo a fly away)
I want to play Angry Birds please. (What?  7 words?  With correct grammar?  I'm blown away.)
Right there (when answering the question where something is.  Before he would just point).
Oh, I get it (when told some new information.  He totally got this phrase from me and whenever I hear him say it I just can't help but grin)
Play Lego Game Daddy (when telling me he played the Lego Game Movie with Hubster on the playstation)
Later?  (whenever I tell him he can't do something now).

A few conversations:

Me: Wake up, we're at Chick-fil-A!
Sleepy Kiddo: Eat play?
Me: Yeah.   Sound like fun?
Kiddo: Yes.  Sleep later.

As we drove past Chuck E Cheese:
Kiddo: Chuck E Cheese!
Hubster: Yeah, we went there for your birthday.
Kiddo.  Yes.  Minion cake.
Hubster: It was a cool minion cake.
Kiddo: Yes.  Cake all gone.

And a funny story:  Kiddo's speech therapist and I are working on the "F" sound with him.  We tell him "Teeth on your lips" and demonstrate.  I did that with him, when we were counting, "four, five" and Kiddo starts giggling.  I asked him "What's so funny?"  He says, "Mommy, teeth dirty."  I had a piece of seasoning stuck between my teeth. ;)

Random stuff: He now can put his shoes on all by himself on the correct foot.  He can alternate his feet on the stairs effortlessly if he has a railing or a hand to hold.  He is no longer having issues with getting his hair washed and is a lot less concerned with getting water in his face.  In fact, in the kiddie pool he went down a slide face first. :)


In the Upcoming Weeks:

We'll be heading up to the DC area next week to visit with family and friends in the area, and to have three days of speech at a Mini CHAMP at George Washington University's Speech and Hearing Center July 13-15.  This is where he went two summers ago to work with Jodi Kumar for CHAMP Camp.  At the time, he had just turned three, had about 20 word approximations, and mainly communicated using sign language.  He left with the k and g sounds and about 10 new words and the phrase "I want ___" which was huge progress for us and really helped me know how to work with him better to get faster progress then we were seeing before CHAMP.  The progress he's made in two years has been pretty incredible, and every speech intensive we've done (CHAMP Camp in 2013 and Nancy Kaufman's 4 day speech intensive in 2014) have been so great for really boosting his speech and progress.  Our goals at the mini speech intensive will be working on his d, n, and f sounds.  I'll keep you posted on how he does, and can't wait to see family and friends again. :)

Plans for Summer 2015

Within the same week, I learned that Kiddo had been accepted to both Nancy Kaufman's summer SPEAK program, and to a three day mini speech intensive with Jodi Kumar at George Washington University.  We've experienced progress at both places, and I really really wanted to go back to see Nancy Kaufman.  Her SPEAK program is two weeks long, and we went for four days and we saw improvement, so I cannot imagine the improvement we would see after two weeks of working with her and other speech therapists at her clinic.

Jodi's grad student Katie, me, Kiddo checking out the medal he earned (age 3) and Jodi Kumar--July 2013

Kiddo (age 4) working with Nancy Kaufman--Oct 2014

But, when it came down to logistics and finances, seeing Jodi at GWU is much more within our budget, my in-laws can watch Little Brother while we're there since they live nearby, Hubster can still work since he works with a company in the area (plus they'll pay for our hotel since he'll be working, score!), and we can visit with family and friends in the area.

So, sadly, I turned down the Nancy Kaufman experience, though we are planning on taking him back sometime.  Maybe next summer if he's accepted again?  Maybe for another four day intensive during the school year?

But I am excited about seeing Jodi Kumar again, she is amazing, and I'm excited to see what progress Kiddo will make and what I'll learn with Kiddo having speech 3x/day for three days with her.  We will see her in July, and I can't wait to see Jodi again and show off how much improvement Kiddo has made in the two years since she last saw him when he only said about 10-20 word approximations.  :)

Awesome Opportunites for 2014

I've spent all of November and the first half of December in what I call fierce Mama Bear Mode.  Sometimes it entails lots of research.  Sometimes lots of phone calls.  This time, it has included lots and lots of paperwork, forms to be filled out by our pediatrician, recording speech videos, lots of phone calls and playing phone tag, and of course, research.

But, I am happy to report I am finally getting new therapies and other things for Kiddo and myself settled into place.  Here's what's on the docket:

Awesome Opportunity Number 1.  Kiddo is enrolled in a preschool!  You can read my previous post about how it all fell into place and how his first day went.  The second day he cried for a while when I told him he was going to school, which surprised me because I thought he had so much fun on the first day.  He cried for 15 minutes after I dropped him off.  But day three, no tears at all.  Now when we tell him it's time to go to school he rushes to get his backpack.  He seems to have adjusted well, and had his first speech therapy session at school, which I heard went well.  We are so proud of our little preschooler.

Awesome Opportunity Number 2.  Kiddo was accepted for the spring (and I'm hoping the summer) session for equine therapy/ hippotherapy /therapeutic riding/ horse riding therapy.  It may have many names, but all the research I've come across has indicated that children with motor planning difficulties make huge progress receiving therapy upon horseback.  Horse riding helps with balance and coordination, flexibility, core strength...the list goes on and on.  Doing therapy-type activities on horseback adds to the fun, the challenge, and the progress.  So anyway, we'll be going once a week for a 50 minute therapeutic riding session from February through April at Storybook Farm.  It's about an hour away, but it's an awesome Christian-based facility that works specifically with children with special needs and I am so excited to see how this will help Kiddo with his gross motor skills, overall coordination, and his speech.  Plus, he LOVES animals, so I think he's really going to enjoy it.  Can't wait to post a pic of him on his horse soon. :)

Awesome Opportunity Number 3.  I recently had an hour long phone consultation with Lynn Carahaly, director of Foundations Developmental House in Arizona.  She's an amazing speech therapist who works with children with apraxia, and rather than focusing just on speech and articulation like so many speech therapists do, she also focuses on how their brains work to help them build up their language skills as well.  I've heard rave reviews about how great she is, and she offered many ideas about how to work with Kiddo after she watched a few of the speech videos I sent her and she read the very thorough questionnaire I filled out about Kiddo. I ordered the manual she wrote, The Speech EZ Apraxia Program, which teaches hand cues (something I've wanted to learn for a while to help Kiddo) and strategies for working on language, articulation, and a whole lot more.  Can't wait to receive the manual and start implementing some of her ideas.  For those interested, she offers week long apraxia intensives, which we considered, but for now will pass on, due to the logistics, cost etc.  Maybe next year...

Finally, Possible Awesome Opportunities:
The 2014 National Conference on Childhood Apraxia of Speech sounds like it'd be awesome to go to.  The best of the best speech therapists who specialize in apraxia speak there, including Jodi Kumar, who we met last summer at CHAMP Camp, and Lynn Carahaly who I spoke with on the phone, and a bunch of others I'm excited to meet and learn from.  This year it's taking place July 10th-12th.

We're also contemplating CHAMP Camp again this summer at George Washington University.   I learned a lot from it last summer and Kiddo learned a new sound and several new words after a week of intensive speech therapy.  I would highly recommend it for anyone whose child has apraxia or suspected apraxia.  Info about it and applications are available here for anyone interested in going.  Applications are due at the end of February.


Fun times ahead folks!  Stay tuned for updates.  God has really blessed us with some awesome opportunities in 2014.  :)

A Guest Posting and The Official Diagnosis

I had the absolute honor and privilege of writing a guest post about our time at CHAMP Camp over on one of my all-time favorite blogs, Jake's Journey.  It was intimidating to write for a blog that has brought me so much information and encouragement, but I am excited to be able to share some of the things we learned with other parents struggling with apraxia.  Feel free to check out the post here, though if you've been following my blog, it won't be anything new.

Also, we got the official diagnosis from our evaluation at George Washington University.  Kiddo has severe verbal apraxia and a mild to moderate receptive (comprehension) delay.  The apraxia I already knew, the severity I had suspected, and the receptive delay I also had my suspicions about, but seeing it on paper is a different story.  But, now that I finally have it on paper, I can send the eval to insurance and they'll (hopefully!) consider speech therapy a medical necessity and give us more than the 20 sessions a calendar year, which we've already used up.  And hopefully the county will also provide more than once a week speech therapy services, now that they have this information in writing.  We shall see.

Starbucks date with the kiddo after speech therapy.  :)

Stay tuned for my post next week about supplementation we've just started doing with the kiddo (other than the fish oil).  We got some awesome recommendations from a doctor who works with children with autism and apraxia and I can't wait to post about it.  :)

Happy August everyone!

Last Day of CHAMP Camp

The last day of CHAMP Camp has come and gone. The parent session about sensory processing by Britt Collins, author of Sensory Parenting was absolutely fabulous.  I may just have to purchase her book.

The kiddo continued working on his functional words, also saying "me" and "you" and "uh oh" during his individual session.  He also said "cookie" and "candy" with prompting. :)

Then it was graduation time!  They started with a slide show, and I snapped a photo of all the pics of the kiddo.

The theme of this year's CHAMP Camp was super heroes, so each of the kiddos got a cape with badges for things that they worked on/accomplished during the week.  Ms. Katie shared the kiddo's badges: One for saying "me", one for saying "uh oh" spontaneously, one for working so hard in individual sessions, and one for working so hard on the phrase "I want ____".

Then, the kiddo got a medal for completing CHAMP Camp, which he is extremely proud of and didn't want me to take off. :)

Kiddo and I with Ms. Katie and the creator/director of CHAMP camp, Jodi Kumar

It was, in case you couldn't tell, a fabulous, though exhausting week.  We are excited to be reunited with daddy and little brother who we missed greatly, and heading back home, to put into practice some of the things we learned in camp.

CHAMP Camp Day 3

Camp Day 3 started a little interesting, as the kiddo was very quiet this morning and didn't want to eat much breakfast.  I figured it was because he was so exhausted from such intensive therapy.  But lo and behold, walking to the metro he got sick all over himself, and then instantly seemed to perk up and was happy again.  Luckily I had an extra shirt for the kiddo in my bag, so we were able to clean ourselves up and get to the Speech and Hearing Center for camp pretty quickly.

He was awesome during camp.  Ms. Katie said it was the best day yet.  He continued working on his functional words, saying you and me for turn-taking, saying uh oh (a big deal as it's a vowel change which he doesn't do very well, he tends to repeat the sounds in words, such as mama rather than mommy and baba rather than bubble).  I was able to snap a photo of the kiddo in small group, having a snack with his friends and their clinicians.  He also got to go on an egg hunt and each egg contained inside of it one of the words he is working on.  He definitely had fun with that, as well as playing with some water toys and play-dough with Ms. Katie and Ms. Jodi.

The parent session was awesome today.  A few of the things I learned/realized I need to be doing more with the kiddo:

CHAMP Camp Day 2

We arrived at GWU about half an hour early so we explored some of the campus before camp.

Then it was time for camp!  Ms. Katie said he had a blast during group therapy playing parachute.  Group therapy time is when we have our parent's education classes, so I miss all the fun, but I'm having my own fun talking with other parents and learning some things that will help the kiddo.

In his individual sessions he continued working on a list of 10 functional words we thought he should be working on, as well as learning to say "me" and "you" for turn-taking fun with Ms. Katie.  He also is learning to say "uh oh", which is so cute to hear him say. :)

Ms. Jodi popped in for a little while to help with one of his individual sessions.

After camp we stopped for lunch and had some pizza and then headed back to the metro.  Within moments he was fast asleep.

Since it is so stinkin' hot here, we decided to check out our hotel's pool.  The kiddo had a blast!

After our pool adventures, when I was digging through my bag, telling him I have to find the hotel key, he immediately replied "Key!"  Never heard the "k" sound come from his mouth before, so that was definitely awesome. :)

Tomorrow is Champ Camp day 3!  Can't believe camp is halfway over already...

CHAMP Camp Day 1

First day of camp!  First day of camp!

The kiddo was a little grumpy when we first got to camp, but before long he warmed up to everything going on and was a grand participant.  I didn't have as many opportunities to observe the kiddo as I will later, as we had several wonderful parent sessions, learning all about apraxia and therapy techniques by the awesome Jodi Kumar.  Plus, I spent a lot of time just talking with other parents who are going through similar journeys and it was wonderful to connect with parents who share the same struggles, and to talk with parents whose kids are much further along in their journeys and see how much progress their kiddos have made.

The kiddo's schedule

The kiddo worked with Ms. Katie on saying functional words (water, drink, eat, want, I, you, me, more, please, bubbles, mommy, daddy, baby, all done, etc) as well as putting the words into phrases:

• "I want ____"
•  "_____ please"
• "more _____" 

Playing a speech game with Ms. Katie on the Ipad.

Ms. Katie and the camp obviously tired him out, as he fell asleep eating his lunch.  I had to carry the poor guy to the metro he was so exhausted.

Stay tuned for day 2 of CHAMP Camp!

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!

Progress Report

We've returned from two weeks of visiting family and friends from where we used to live, and the kiddo had a blast with his cousins and his friends we were able to catch up with.  We went to playgrounds, the farm, the air and space museum, and had plenty of opportunities to relax and hang out with family.

The kiddo playing with his cousin/bestie. :)

I think the kiddo blossomed into more of a little boy while there: he was very cautious and quiet before the trip.  With all of his male older cousins to wrestle with, and his bestie, his cousin who is only 3 months younger than him, he had lots of boys to play with and learn from.  He now loves wrestling with Daddy (before it was just pillow fights with lots of giggles. The giggles are still there, along with screams of delight).  He now climbs on things he wouldn't even attempt before (he climbs up onto our bed now, onto our couch from the side arm, and is much more confident at the playground.)  He throws so much better and harder too.  It's fun to see him much more active.