New Year's Eve

The Mayo Clinic Adventure

C, Granny, and I hopped in the car this past Monday morning for the 9.5 hour drive to Mayo Clinic.

We decided to stay at a "family resort" outside of Chicago because (a) it was going to snow (b) it was less than 2 miles from the path we would be traveling and (c) there was pool and bowling alley in the hotel.  The first leg of the drive was a piece of cake and as we checked into the hotel the snow began to fall.  It snowed steadily that evening and we were glad we decided to take the extra travel day.  We came to discover the pool and bowling alley were in a different building on the campus and due to the snow decided we didn't want to go back outside with wet hair.  So, we drove into the town of Itasca.  We grabbed a coffee and found America's Best Train, Toy, and Hobby Shop.  They had more Geotrax and Cars stuff than we have ever seen in one location.  We picked a treasure or two after about an hour of browsing and were off to a local pizza place for yummy dinner.

Tuesday morning we had breakfast and jumped back in the car to Madison for lunch and a visit to the Children's Museum.  We had so much fun running around and playing.   This museum has building toys, an art area with lots of projects, and a huge area to run ramps, climb stairs, slide down slides and more.  It was a great stop and everyone had fun.  Back in the car we went for the final leg of our trip.  The little one had a nap in the back.  Granny and I were excited to cross the Mississippi and enjoyed the landscape changes.  We arrived in Rochester after dark, stopped for a bite to eat and were off to get settled in to our home for the week.

We decided to rent "4 Private bedrooms in Rochester, Minnesota".  For a fair rate we rented the downstairs from someone's private residence.  I had hemmed and hawed about this decision for quite some time as I was nervous about staying with a stranger; but just a hotel room for the three of us for the week sounded tight.  We were to have 4 bedrooms, a living room, and bathroom.  We found the house and met our host and her beautiful baby.  She only had two beds made up for us (which is all we really needed) and we were surprised to find space heaters in every room, outlets with no plate covers, open vents, and a few other minor issues.  When I asked how we were supposed to come and go, there was no key available for us "yet". And the wi-fi was down.  We unpacked and got settled in, ready to make the best of it.  As the night progressed it became frigid.  It was the kind of camping cold where you can not move under your enormous pile of blankets because it might break the seal and the air could enter.  As I lay in the cold not sleeping I concluded we would leave in the morning, this was completely unreasonable.

At 4 am I awoke to C waking abruptly coughing, and throwing up all over our bed.  There was no bath tub, no paper towels, no extra sheets, and we had to leave the bed in the cold to clean it up.  I pulled out the wipes, threw the sheets in the wash (benefit of staying in someone's basement), got C settled in with blankets and her iPad and packed up all our stuff.  I called and made a reservation at the hotel I had been considering while hemming and hawing.  We could check in at noon.  I should mention she was not sick on the way there or again after we left, I think it was related to the cold.  Also, our hosts apologized, there is usually heat and it was supposed to be fixed before our arrival, but they did not think it was important to tell us before our arrival or during our stay.

C had an appointment at 7:30 and then one at 10:30.  We drove to the Mayo Clinic complex, Granny dropped us off at what we thought was the right building, and went to park the car.  We were a few buildings off, but everything is connected by tunnels and we made it to the first appointment tired, but on time.   C doesn't like medical environments, the more medical it seems the less she likes it.  When I say she doesn't like it I mean: "if someone comes near her in a medical environment she screams like you are peeling off her toenails." We have never had a successful blood pressure reading as she will not calm down enough for it if someone is near her.  After much screaming they had checked her height and weight.  We saw a neurologist who is the gatekeeper to get into the speech and language department we were really there to see.  We had time for breakfast in the cafeteria before headed to see Dr. Strand, a leading apraxia researcher who is part of the team I heard present at the national conference last year.  At this point we had been up since 4 am and C was holding it together, but was not at her best to meet someone new for an evaluation.

Corinne was semi-cooperative for the first day of the evaluation.  The office had a sofa and a kid size table and chairs.  This made C much more comfortable than a room with an exam table.  They did a receptive language test, we discussed her skills and challenges, and discussed the intensive program they have for a select few appropriate candidates.  This first day, she told us she did not believe C was ready for the type of therapy that is most effective in treating Childhood Apraxia of Speech.  The therapy in their intensives use no games or pictures.  The focus is getting as many repetitions as possible by the child watching the therapists face and mimicking what the therapist does.  When we completed that first appointment we grabbed lunch and were able to check into the hotel.

Oh, the luxury!  There was heat!  There was a pool in the building!  It is connected to the Mayo system through the indoor tunnels!  We had keys!  It was lovely.  Joy and relief were felt in our very nice mini-suite with a half wall between the sitting room and beds and everyone laid down for a much needed nap.  It was an excellent decision to move to the hotel.  The pool was 3 feet deep all the way around, Corinne could touch all the time and loved it.

The following days, we had additional appointments with Dr. Strand and she was surprised how different C behaved from that first meeting.  We learned and practiced some new strategies and are stepping back to focus on empowering C to know she has control.  We are doing large and small, tight and loose, and fast and slow motions to learn what they feel like on our big muscle groups and then moving to our smaller muscles in our hands and face.  We are also using physical and spatial cues to elongate or shorten (control) sounds.  Her ability to maintain focus, ability to control her body, and language (not speech) are the suggested focuses for the time being.

The ability to walk from the hotel to our appointments, stores, restaurants, and more without stepping foot outside was fantastic.  There is a grand piano on the subway floor of the building our appointments were in.  Most times, someone was playing the piano or choirs were singing, and crowds were gathered to enjoy.  There are volunteers around every corner waiting to direct you as you find yourself lost (again) in the maze of tunnels.  Mayo was efficient and well planned.  It was an unusual feeling looking around any room or hall and trying to imagine each person's story and what brought them there.  We only left the enclosed tunnels of Mayo once more to visit Costco, and a blow up jumping place.  The Costco was empty. There were no lines or crowds the week before Christmas and this was busy for them. Minnesota is strange land.

Out last appointment wrapped up at noon yesterday.  We were able to conference Kevin in for the recommendations, questions, and observation summary.  We were on the road by 1 pm and drove straight through to arrive home at 1:45 am this morning.  C changed into PJs in Chicago, read a story, and went right to bed.  I can not thank my mom enough for joining us on this adventure.  I am not sure what we would have done without her.  She was a great driving companion well into the night when we were getting sleepy and silly.  It is so nice to be home.  We missed Kevin and the hounds like crazy.

S-U-G-A-R Jump Into Your racing Car

It is time we talk about something important over here.  I am so excited the favorite movie of the moment is "Wreck It Ralph".  I love this movie, she loves this movie, he likes this movie, we love this movie.  Let's take a moment to overanalyze this great movie and it's life lessons.
1.)  Believe in yourself.
2.)  Get outside of your box.
3.)  You can do anything you put your mind to.
4.)  Don't ever let others tell you what you can do or who you are.
5.)  Princesses and heroes don't always look like princesses and heroes.
6.)  People that do bad things are not always bad guys.
7.)  Watch out for double stripes.
8.)  Closing credits = dance party
9.)  Stop playing the same old games and whole new world is waiting for you.
10.)  Your dump could be a whole new life for someone down on their luck.
11.)  Friends are worth fighting for.
12.)  Whatever people say about you they can not change who you are.
13.)  You are not defined by how others perceive you.
14.)  Always sign your masterpieces.
15.)  Watching someone get hit (but not injured) is funny.
16.)  Beauty is in the eye of the beholder.
17.)  You find the best friends (or the someone who gives you the honey glow) in the most unlikely places.
18.)  Funny nicknames are always fun.
19.)  You can't reprogram the world and pretend you are someone else.  It will blow up in your face.
20.)  Memories can not be locked away.  They get out.

Messy Party

 We had a messy party this summer.  It was my dream.  

We started with every kid grabbing a huge sheet of paper and toe painting.

Once everyone arrived we opened all the activities.  This is a water table full of cornstarch and water with kool-aid coloring droppers to squeeze in.  

 Fun included shaving cream covered slides that landed on the mat or slip and slide.

We filled our sandbox with 20 packages of spaghetti.  It was my favorite.  Awesome!

Toward the end we filled the pool with bubble solution.  I used the glycerin, dawn, water recipe to make 10 gallons of bubbles.  At the very end we turned on the hose and cleaned them all up.  I had everyone bring a towel, but also had a box of extra towels just in case.

Of course, no summer party is complete with out ice cream sundaes and popsicles.

A Break and A New Start

It has been a while (again) since I posted.  I do not think I am a born blogger.  It was a very fun summer.  A week in Denver, a week in DC, a trip to Michigan Adventure, lots of swimming, playing, parties, and fun.  We had an awesome messy party in the backyard (she stayed clean) and fun times with friends and family.  

C took August off of all therapies and just had fun and started karate.  She is going twice a week and seems to love it.  She has a very hard time following directions and trying new novel motor movements.  She is a great jumper and kicker, but struggles with the concept of punching, or making a fist.  We practice all the opening stretches at home and she is getting better at those.  The place she has class is awesome and there are helpers that help the whole class, but spend a lot of time with my kid.  She has made tons of progress.  I worry other parents don't like how much attention she takes, but they have all been very supportive and keep telling me it just takes time to get the hang of it.  Some of the other kids are frustrated she doesn't do everything they do.  I love that her teacher punishes her for talking or not following directions just like she punishes the other kids.  I hope this is good for her, I think it is.  

Once we started to get the hang of karate it was time to go back to school.  This year back to school meant a whole new school and schedule.  I am the proud mama of a kindergartener.  She has two classes.  One with 8 kids and 4 adults with lots of support and help and one with 22 kids and 2 adults where she is expected to participate in the standard curriculum.  The first day of school Kevin and I both dropped her off and picked her up.  When we dropped her off she cried a bit and was just apprehensive about the whole thing.  She was seriously glowing when we picked her up.  She was up early the rest of the week thrilled to go to school.  Her team seems amazing.  

It is so hard for other kids to include her and realize she is different.  I am volunteering in art class with her big class.  The kids didn't know who I was and some of them were explaining to me what C can or can't do.  It was such a weird moment.  I need to get used to these moments where other kids complain C doesn't have to do what they are doing, or find her hard to get to know.  I have not mastered handling these moments at all.  I explain things she enjoys and things that are challenging and how everyone is different.  It is hard to understand when you are 5.  

I just hope they are nice to her, and she makes friends and learns and has fun and loves school.  I know every one will not be nice forever and hope she has the self confidence to not worry about what other people think or say, but I want everyone to be nice for a few more years.  I know problems create problem solving and I don't want to keep her in a bubble.  It is just that so many things are so hard for her I want some things to be easy.  

She chose her Halloween costume this morning.  You can look forward to adorable rainbow fairy pictures in the future.  She is so excited she wants to wear her wings everywhere.  She is studying herself in the mirror in her wings as I type.  I better go play.

FIVE

happy fifth birthday morning balloon drop 

Gorgeous Birthday Crown

Her best friend did his robot dance for her.  She cheered, they hugged.  

Check out that big 5 year old riding by herself

She choose what she wanted to do all day on her birthday.  We woke up to balloons and Lightning McQueen GeoTrax (huge hit), had speech (okay, she didn't choose everything), opened presents, swam, watched some TV, and ate at the Chinese buffet.  

Her party was a few days later.  We tie dyed, played on the swings and in the yard, threw water balls, ate, and had fun with some of our favorite people.  

Then we closed out the birthday weekend with a carnival at Howell's Balloonfest.  She had a blast.  I am pretty sure I need to get this kid to Michigan Adventure this summer.

End products

CHAMP Camp and D.C.

Alright my sweet, neglected blog readers.   It is time for me to tell you about our road trip and CHAMP camp in Washington, D.C.

Granny, C and I hit the road early Sunday morning and stopped in Youngstown to enjoy a huge metropark with a fun children's garden and playground.  We spent the night at the Pittsburgh airport and had an awesome room, we could watch the planes land from our window.

We arrived in D.C. the next afternoon.  There are wacky D.C. roads  that change direction based on the time of day.  They made it tricky for us, but we got there.  We stopped by camp before checking into our hotel.  I was not a fan of driving in D.C.  Don't do it!

Camp started Tuesday morning.  We had a few hurdles immediately. C did not connect well with her clinician.  The clinicians were trained and using DTTC (Dynamic Temporal and Tactile Cueing).  In short, if the child can not produce a sound you provide a physical facial cue to help.  "Open" was a one of our target words.  So, her clinician had container after container full of toys.  For "O" she would lightly squeeze the chin, "P" your hand pops off the lips, "N" is one finger on the side of the nose.  C did not enjoy having this woman up in her face at all.

The professor who planned and facilitated camp was amazing.  I can not say enough great things about Jodi Kumar.  She is an expert in apraxia and is a resource we are so thankful to have.  She worked with all the parents and clinicians to provide personalized help.

While C was struggling with her wonderful and patient clinician Granny and I were observing, in parent discussions, or in learning sessions with experts on apraxia and sensory processing.  The current research on apraxia was shared and discussed.  Oral motor exercises have been proven ineffective, you should only practice words.  Repetition, repetition, repetition.  Approximations are discouraged as you will practice the approximation as many times as you will eventually have to practice the actual word to learn the motor plan.  This information was frustrating as it is most of what we have done for the past few years.


Camp ran 8:45 to 1pm daily.  After camp we would grab lunch and then play.  We went to the National Zoo and even got to see panda bears eat dinner up close.  We checked out the monuments and exhausted ourselves on the 90+ day.  C had her first Metro ride and cab ride.  She was a stellar traveler, listener, communicator, and all around awesome vacationer when we were not at camp.

Camp was a 15 minute walk from our wonderful hotel, the Melrose.  Everyone at the hotel went above and beyond to make our stay great.      It was a 10 minute walk to Georgetown, where we found great food most nights.   There were motorcades, airplanes, helicopters, buses, trains, and construction every day on our walks.

Let's talk food.  We had phenomenal stone fire pizza, pasta, Mediterranean, burgers, sandwiches, salads... handmade salted caramel ice cream...mango and brie waffles...Seriously, it was glorious.

Throughout the week our clinician and Jodi worked on different techniques to engage C.  We had video chatted a few times prior and had reserved the "sensory room" for one session each day based on these discussions.  They wound up spending most of their time in the "sensory room".  C responded and participated more and they started to have fun.  They only problem was there was no observation in that room.  The treatment rooms we small rooms in a row with a long skinny room next to them.  The parents watch from the skinny room with headphones through a mirror.  So, we were not able to observe much after day one.


Corinne barely touched her talker at camp, but did a good job using it to request things out and about.  She did not want to participate in graduation and we wound up leaving without saying goodbye to all the other wonderful families because she was just done.

The day of graduation we hit the road for Cleveland.  It should have been a 6 hour drive and we left around 2.  Since it was a Friday in D.C. the traffic was already horrific (did I mention I hated driving there?).  It took us 3 hours to get out of D.C.  and we arrived just before 11 at the Glidden House.

Glidden House is a mansion from 1910 on the campus of Case Western.  It was beautiful.  We crashed and then awoke to a huge complimentary breakfast.  We choose this hotel because it is next door to the Cleveland Botanical Gardens.  We checked out the frogs,  the trains, the gardens, and the rose competition before it was time to get back in the car.

When I asked C to get back in the car she said "NO".  When I asked if she wanted to go see daddy she opened her door, jumped in her seat and said "go".

The final leg of the drive was uneventful and we were home before dinner.  We missed Daddy / Kevin like crazy and it was so nice to be home!

Road Trip

We have a 9 hour road trip in June.  I trying to set aside the toys she like that are good for the car to make them exciting again byt the time we are on our way.  I am targeting one activity per hour.  So, I am trying to come up with 18 total activities.

So far I have:

1.  Homemade number book with dot stickers
2.  Button Snake
3.  Aquadoodle Travel
4.  Pipe cleaner magnet bottle
5.  Look and find Kai-Lan Book
6.  Sew 'N Sew
7.  Puzzle Flashcards
8.  Balloon filled with flour to squeeze
9.  Books
10.  Glow sticks for after dark
11.  Edible necklaces - Cheerios, pretzels, etc
12.  Magna-Doodle
13.  Coloring Books - Crayons and Markers
14.  CDs for sing along time
15.
16.
17.
18.

We will have our iPad as well.  We will drive 4-5 hours each day and I theorize we will watch one movie on each leg.  I just don't want the TV on the whole trip.

Do you have more ideas for us?  Please share!!

Words, Signs and Apraxia

We have been taking sign language for a few months and are about to start an intermediate course.  We are getting more comfortable having a basic conversation in ASL.  C has been doing an awesome job doing signs with her approximations since about December.  Signing with her attempts at verbalizing gives her more motor memory to work from when trying to say it again.  Apraxia is all about repetition and building motor memory helps.  So, signing has been great.  Her sign vocabulary keeps growing.  When I tried to make a list of sign she uses regularly for school last week it was over 30 signs.

We took the little one out with some people from our ASL class, our deaf teacher, her family and friends.  There were 4 little girls signing.  It was so interesting to watch them share crayons and request colors with sign.  If feel like we saw it click for her that some people talk with just signs.  Since she had only seen signing with talking previously I think this is the first time she really understood it was a language on it's own.


The moment I e-mailed the list to school she stopped using her signs as often.  Her private speech therapist thinks it is great that she is signing less.  She is still producing good approximations without the sign.  This means her brain is telling her mouth what to do on it's own, without additional motor help.

So, we will keep learning more signs and she will keep outgrowing them.  I'll keep you posted.  

nom nom nom

One of our favorite OT exercises involves a hungry puppet, little craft balls, and a pair of tongs.  The puppet tells us how hungry he is and asks for his favorite color snack (usually green or brown).  Then the little one has to pick up the ball with the tongs and feed it to him.  Our puppet hates pink ones and spits them back out, sometimes across the room.  So, depending on the color she feeds him she will get a different response.  We usually do this activity with 15-20 balls and she feeds all of them to him.

CHAMP Camp

I am thrilled to announce Corinne has been accepted into Childhood Apraxia and Motor Planning (CHAMP) Camp.  This is the second year George Washington University of offering Apraxia camp.   This unique, 4-day experience offers extensive individual therapy; both small and large group sessions, as well as parent education sessions in Washington, D.C. the week after school lets out.  

My mom is going to join Corinne and I on this adventure.  Corinne will have camp from 9 am - 1 pm and my mom and I will attend one parent education session daily.  I theorize we will return to the Melrose (thank you to the Melrose Hotel for providing our room for the week of camp) for a nap and then head out to explore the offerings of DC.  The National Zoo and the Air and Space Museum are certainly on our list.  

Does anyone have any suggestions of things we should check out or food we shouldn't miss in DC?