Juggling summer camp

We are busier that ever this summer and it's been with mostly VERY fun activities.  Our whole family really settled into a new summer routine that includes late night bedtimes and more relaxed mornings.  This week, though, camp started for Julia and Emma started back to school for her summer session - both things the girls were looking forward to and love by the way!

Lazy morning earlier in the summer.  PJs on all morning and plenty of time to do science experiments!

I didn't realize how crazy adding in camp/school would make our schedule.  Since we aren't traveling as a pack like we were earlier in the summer it seems everyone has a different place to be and a lot of it is at the exact.same.time.

Here is how we kicked off our life with camp on Monday:

• Get girls up and fed and out the door by 8:15.  Drop Julia off at camp at 8:45 and head to another town for Emma's 10am PT appointment (more on that later).
• Drive Emma to yet another town to drop her off for school.  Try to feed her a bit of lunch in the parking lot but she is too busy looking around for her wonderful one-on-one aide, Erica.  She really missed her!  She told me so on her talker several times over the break.  When Erica arrives Emma decides it is time to immediately head into school and lunch can wait.  
• Leave Emma at school and head back to my town for a chiropractor appointment.
• After my treatment head to Julia's camp (if you guessed it's in another town you would be right!) to pick her up and head home in time for Emma's bus to drop her off at school.

We left the house at 8:15am.  I returned home with Julia ~3:20pm.  I drove just under 100 miles and went pretty much nowhere- ouch!  Luckily that was the busiest day of the week for me with it getting a bit better each day.  I'm happy to say I'm not contributing to global warming nearly as much now :-)

There are 3 days/week during camp that Julia and Emma need to be somewhere at 9am and they are in completely different towns or states.  One week it will be easy since there is a before care option that opens at 8am.  The other two weeks we've figured out a way to get everyone where they need to be on time.  

Who knew summer could be so crazy??!!  It sure will be nice in September when Emma goes to a school in our local school district.  Having her closer to home will be a very welcome change from the 35 minute drive to her current pre-school.

You might ask:  Emma starts school at 11:50am so why does she have to be somewhere at 9am?  Well, we decided to have her change PT places for about 6 weeks so she can use the Biodex Unweighting System that is housed at a different location.  What we do is suspend Emma with a harness over a treadmill and work on her walking.  The tone in her legs is just so very high that it makes it very difficult for her to walk in a gait trainer and she wants to walk so badly.  We thought we could try and train her muscles if we unweight her a bit to help her learn the movement without as much effort.  It's a pretty interesting concept and we're not sure if it will work but wanted to give it a shot.  She has a lot of tone to overcome so we're going to try and go 2x/week for 6 weeks and then evaluate the effect.  What we are seeing so far is that she starts out really tight and it's hard for the PT to help her bend and move her legs but that she gets better during the session.  And it's clear to everyone that she LOVES getting in the harness and walking on the treadmill.  She is one giggly girl!  

Here is a video of her using the Biodex unweighting system for the first time:

In about 3 weeks our schedule will settle down and we'll be back to summer without camp.  We will travel as a group and enjoy lots of fun activities together again.  Until then, I'll keep up the juggling act!

Technology Update

It seems like there isn't a long stretch in the year when we are bored.  Right now we have lots of school activities, communion parties, softball games, etc.  We are also working on Emma's kindergarten placement and it seems like we have an agreed upon placement for her in the Fall.  I'll tell more about that later once we update her IEP because I'm afraid announcing it on this little ole blog might jinx us.  Better safe than sorry in my book!  Especially when it comes to IEPs....sigh.

Emma has been making a lot of progress using Evie at home.  She has a new SLP at school who hasn't been trained on her device yet but she is working with it as best she can and Emma is starting to show her what she can do with it a bit more.  We had an IEP meeting today to increase her Speech session from 2x 30 min sessions/week to 2x 45 min sessions/week based on input from her prior and current SLP.  Emma just gets warmed up and in her groove at the 30 min. mark when it's time to end and they want more time with her.  So that was agreed and added to the IEP.  Also, we'll add training time for her current SLP to the IEP and hopefully she'll get it ASAP.  Lastly, we added in some wording that lesson plan words will be programmed into Evie prior to the start of the unit.  Right now I do all the programming but once her SLP is trained she will take over that responsibility.

I spent a lot of time on the PRC website (the training tab at the top of the screen is where I went) and AAC Language Lab lately taking the self paced study courses and I've learn a ton!  The resources they have posted are wonderful and if you are using a PRC device I recommend checking them out.  They have lesson plans for how to teach core words and ideas to incorporate the core words into your everyday life.  I printed out many of the lessons for the Stage 2 communicators and plan to use them at home with Emma.  I'm thinking I'll plan to dedicate 2 sessions/week at home working on the lesson plans over the summer.  That seems about right for us.  We also plan to add in outside school Speech sessions with her device over the summer with the AAC expert at our hospital.  My hope is to build on the momentum Emma has with Evie lately and have her start Kindergarten with a more functional use of the device.

Emma continues to love playing with her iPad and it really gets her to open her hands nicely.  We decided to purchase the iPad attachment for the mount (Mount'n Mover) she uses with her talker.  The iPad attachment can be used with both her table top holder and the wheelchair holder.  The iPad attachement is the new one with a bungee cord to keep the iPad secure.  We can also use it to hold a mirror (my girl LOVES to look at herself) or other items instead of the iPad.  It was an investment in the attachment but so far it's been hugely successful.  Here is a brief video of Emma playing the Peeping Musicians app that is put out by the people at Helpkidzlearn.  In case you aren't familiar with them, it's a website with many fun switch activated computer games Emma enjoys playing.

*Inch*stone Captured

When Emma was very young, when we first found out about her cerebral palsy, we thought that perhaps only her arms would be effected.  We saw that she wasn't using her arms or hands very good but we thought her legs seemed to be moving around pretty well.  I had researched a ton on CP and found that usually CP has the following effects:

• All limbs effected
• One side of the body limbs effected (i.e., arms and legs on right side of body)
• Legs effected

We wondered early on if it was possible that Emma would "only" have her arms effected and that the rest of her body would work fine.  Doctors didn't really have an answer for me and we started therapy to address her arms.  Chris and I expected that she would walk but maybe have trouble with writing.  Let's just say our expectations have been reset over the years because as of now she is neither writing or walking unassisted.  

Emma had THE BEST occupational therapist (OT) for early intervention and she was able to see her up to 3x/week and made a lot of progress with her hands and arms.  Since we moved Emma has only received OT at school and we've noticed that her arms were getting tighter and her resting position was often with her arms curled up, wrists bent and thumbs inside her fist.  She wasn't always in that position so I hadn't realized just how tight she had become until I noticed that in most of her recent photos her arms were in this non preferred position.  Here is a photo with her left arm in the curled up position, but lots of times she had been curling up both arms.  

I started to worry that most of the doctors Emma saw were not even looking at her arms.  They focused on her hearing, her legs, her hips, her feet, her feeding, her talking, etc.  Everyone I talked to about her arms sort of glossed over my concerns so I made an appointment for her to see a physiatrist and I'm so glad I did!  She is concerned with the whole of Emma.  Not arms, not feet, not ears, etc.  All of Emma and she listened to my concerns about her arms and made some very good suggestions and she is now on team Emma and in our every 6 months appointment rotation which makes me very happy!

Some changes we've made is focusing more on arm/hand/wrist stretches, purchased Benik splints to help her wrists and thumb stay in a more neutral position and added in an extra OT session outside of school (not sure I'm thrilled with the provider, though, so we will likely be looking around for an alternative provider that fits in our schedule).  

Emma with her splints on

The past couple weeks I've noticed some changes.  I've found her sleeping with her arms over her head on several occasions.  She has a hard time raising her arms up high and in rest she typically slept with her arms curled up or with them by her hips. And then this morning when I went in to wake her up she seemed to be starting to stir and she brought her forearms over her eyes and rubbed a few times.  She didn't rub her eyes with her fists, but did slide her forearm back and forth so there was no mistaking it was a rubbing of her eyes before she opened them like most of us do in the morning.  And then she opened her eyes and was a bit startled to see me standing over her smiling down and she giggled.  

When we were in Washington D.C. Emma was resting in the corner of a chair and she brought her hands to her mouth and put her finger in it like she has been sitting like this for years.  She hasn't and it was big news in my book that she was sitting like that while moving her arms so loosely.

Yesterday we visited the zoo and Emma was very interested in the animals - she is branching out from her love of watching people at the zoo to attending a bit more to the animals ;-)  At the giraffes she even reached out for the fence, placed a finger on it (wow, this is HARD to isolate a finger from her fist!) and then her open hand on it before swinging her arm over the whole bar.  I caught a bit of it with my camera and was so excited because this was a big *inchstone* for Emma.  

Emma's starting to use her arms more and it's worth documenting;  it's worth celebrating!  

Tears of joy

It's amazing how far Emma has come with her speech therapy.  It has always been her most hated therapy; not because of her therapists (nearly all who were very sweet and encouraging) but because it is so gosh darn H A R D for her.  So more often than not she refused to participate, instead finding fascination in the most minuscule of items.  All her therapists put her in the most bland room where there was nothing to look at in the hope that Emma would participate and not be distracted but she was always able to find fascination in a light switch that never moved or a light that stayed on.  I cried a lot in the early days after her speech and hearing sessions because I just wanted Emma to make some progress so so badly.

When we moved and Emma started at her new school a spark ignited and she started to participate better.  Her SLP is amazing to work with and Emma just clicked with her and let me tell you when a child clicks with her therapist amazing things happen!  Emma started letting her SLP in on all that she knows, first by switches and then through various higher technology talkers as we tried to find the right device to buy.  When Emma picked the Eco2 (her Evie) as her talker of choice we were happy to move forward with customizing Evie with her interests instead of the generic boards of the borrowed devices.

Emma was doing well with the initial word set we created so this week we added in a lot more new words and Emma rose to the challenge.  Many of the words (like please, in, feel, hug) were brand new to Evie and somehow Emma knew just how to use them.  I mentioned on Tuesday that Emma said a few things over the course of an hour that day and I was so thrilled with that because it was the most she used it in an outside the home setting.  Today I found out she has been holding back on us.

I had a meeting already scheduled for today with her SLP and before we got to the reason for our meeting she had to share what happened in her school speech session yesterday.  She had it all written down and was grinning ear to ear about it.  I was in shock at how much Emma said in her session and just have to share.

Below is what her SLP wrote down during the session.  So glad she was able to share all of it with me!  Note: All words selected by Emma via her eyegaze are in italics.  Each word in italics requires Emma to select it so if she says play doll, she needs to select play and then select doll, thus stringing the two words together.

• SLP asked Emma what she wanted to play with.  Emma said doll.
• Then Emma said want Erica and looked over at Erica, her aide, and gave her a big smile.
• SLP didn't have a doll in the room so she was hoping Emma might change her mind.  She selected the toys option and asked Emma to pick again and Emma selected play doll so the SLP went and got a doll :-)
• SLP asked Emma how the doll feels.  Emma said bad
• SLP was confused and so she said the doll feels bad?
• Emma said need
• SLP said need?
• Emma said need hug 
• Her doll needed a hug - oh my gosh how cute is that!!!  So the SLP gave Emma the doll to hug and she hugged her for a long time.
• Then Emma said in stander
• SLP and Erica didn't know if this meant Emma wanted the doll to stand or if Emma was used to being in the stander at that time of day.  So for now we don't know what she meant.
• SLP asked what Emma wanted to play with the doll
• Emma said ball, so they rolled the ball between Emma and the doll and Emma laughed the entire time.  
• Erica left to go to the bathroom
• Emma said want Erica
• Emma again said want Erica
• When Erica came back into the room, Emma said hi and then smiled at Erica
• Then Emma said toy drink smoothie
• They pretended the doll drank a smoothie and her SLP told her it was time for her to go back to the classroom.  The 30 minutes were up.  Seriously, all this happened in just under 30 minutes.  My mind is quite blown away by this.  
• Emma then said play please
• SLP and Erica could not refuse her that request - they were tearing up with all Emma had said and then she said please.  Oh, my!  How could they resist?  So they agreed to play a bit more with her and then said it was now time to go.  
• Emma said want friends meaning she was ready to go back to the classroom where her friends were.
• Then she said (and this is a button that has a phrase in it so it said it all at once rather than Emma having to string it all together) well, I must be going now

I just had to write this down here so I don't forget it.  Did I mention that I'm blown away by all that happened in that 30ish minutes?

Look out, Emma, the bar is set high for you to achieve.  I have no doubt about your abilities and your team doesn't, either.  2013 is going to be your year.  I can't wait to hear all you have to say!

And now I'm off to add Love to the feel words because I can't wait for you to say Mommy I Love You.

Suggestions needed

Mom, I'm way too cute and can get everything I need with my smile.  Trust me!

 As part of Emma's aural rehabilitation and really just as part of being teaching my little one, I'm constantly talking to Emma, naming things, "narrating my day", etc.  It's clear to me that Emma knows and understands us and I've been trying to take it to the next level of her communicating back to us.  Her main form of communication is currently smiles, laughs, whines, cries and vocalizations.  She also uses her eye gaze quite effectively.

Previously, we've worked with picture cards with Emma but she had very little interest in using the cards after a few weeks.  We've worked with the iPad - mostly the Yes/No and Proloquo2go apps.  She definitely is interested in the iPad but has a very short attention span for communicating on it so it's rather hit or miss with her.  I'm trying to build her vocabulary and prompt her to communicate more and was looking to use both high tech (iPad) and low tech (picture cards, buttons, switches, etc.) to keep her interested.  When I came across a blog post on Adapting Creatively that showed how to turn a swim noodle into a card holder I thought this would be perfect for us!  You can see the original post here.  I bought a pool noodle on clearance for $0.75 and set about making the card holder in various lengths.

We've been doing same and different matching with Emma.  Her SLP gave me the cards for Brown Bear, Brown Bear and we have her match the photos in the book to the matching card.  Emma loved this game and was very in tune with the cards and picking the "same" card as the picture in the book.  She would pick correctly about 90% of the time and we implemented this game for the Goodnight Moon book.  Then, she decided she didn't really like this game after all and found anything she could to distract herself from what we were trying to play with her.  Suddenly, the lights, a spot on the floor, her fingers, anything was more exciting than playing the matching game.  This is pretty much how Emma operates in her speech and hearing formal and informal sessions - she prefers not to participate.  So, we stopped playing that game for more than a month to see if her interest would be sparked again after a long break.

When I saw the noodle card holder I thought it might be a good time to re-introduce the book matching game.  Originally we would show her the book and then prop it up and hold the two card choices for her - one in each hand, but using the noodle card holder would make this game easier to play and allow us to increase the level of difficulty by using 3 or more card choices for her to pick from (this would be difficult if I could only hold them in my hand).  I was so excited to start playing this game again and try out the noodle but, sadly, Emma wasn't interested in playing with me.  After several attempts over a couple of days to play with Emma refusing to play along I decided to try something else.

I took the flash cards we have and placed them in the noodle and made a big fuss and tried to have Emma pick between two flash cards.  She was very happy to sit in the play room and have me talk all about the cards and make noises and talk them up and put them in the noodle for her to pick between the two while she completely ignored me.  And, it was a lot of work for her to ignore me - I wasn't making it easy on her!  Often I find she works so hard to ignore when it would be lots easier to just give in and play and I just don't get it.

I'm looking for any ideas or suggestions on how to get Emma to take an interest in communicating.  If you've been there, done that before I'm open to all ideas.  Please, please share them with me.

Here are a few photos I took when it was obvious I had an unwilling partner in my game.  Enjoy the serious cuteness of Emma!

There is NO WAY I am going to look at these flash cards.  No way, no how.

Horray!  She is ending this torture session.  No, onto more important things like cuddling with Finnegan.

A view from the back.

Wondering

When you have a child with multiple challenges it's easy to wonder if the decisions you make are the right ones.  And as Mom, I put a lot of pressure on myself to keep up with the various therapies, nutrition, equipment, etc.  Since we are living in the information age you can pretty much bet that if you name it, there is information about it and Goggle is ready to provide various links to learn more about it.

Because we all want the best for our children, we often try and leave no stone unturned when it comes to knowing what is available to our children.  We usually know more options out there than our doctors because we've forged a network with other parents across the nation and the world to learn more about what we can do to help our child achieve their desires.  I say their desires because I've found that - overwhelmingly! - us parents are taking the lead from our children on what they want to do.  For example, Emma is totally into moving these days and by gosh we are going to do everything possible to help her realize her goal of easier, quicker movement.

What is hard, though, is deciding which path to take to help them achieve their goals and staying the course. Because it's easy to find success stories about most of the therapy and equipment options, it's easy to second guess your treatment decision if your child isn't making as many gains as quickly as you hoped.

Emma is amazing us with how much she is moving and doing other new things recently.  She is getting so quick at commando crawling, sitting with minimal assistance on good days, walking at home in her gait trainer, sometimes vocalizing Yeah when she wants something, opening her hands more and attempting to cross midline with her hands more often, sometimes playing independently with her toys, demonstrating her understanding of some new concepts like same and different in addition to just identifying objects by name.  This amazing progress happened within the last year, and most of it within the last 6 months.  To say that Chris and I are thrilled to see all her hard work paying off would be an understatement.  To say that Emma has worked tirelessly (of course she has had an incredible amount of fun and adventure in her short life, too!) to get to this point would also be an understatement.

So, what is the point of this post?  I'll get to that, but first I have to tell you about a little guy that Emma has known for the last 2 years.  He was born very early and had a lot of challenges.  He was further behind on his milestones than Emma when they started out at PT together, but that didn't matter and the become fast friends.  He had very similar intervention to Emma.  His treatment was at the same hospital with many of the same therapists and the same equipment.  But today he is not as delayed in his milestones.  We were happy to see him the other day walking with a walker (not a gait trainer, but the kind like the elderly use) and talking to everyone, blowing kisses and generally looking amazing!  It was so nice to see how good he is doing - he seems close to catching up with his adjusted age!

Running into this little guy started me thinking.  The results of intervention with him and Emma are very different.  If we did not know him and that he had the same intervention as Emma, I might have asked what type of therapy he had and consider trying it for Emma.  I might have wondered if Emma could have achieved her goals quicker if she had the same intervention as this little guy.  And I would not have known that the intervention was essentially the same as Emma but with a varied outcome.

I also think that if we had changed Emma's treatment in the last 6 months and started seeing all the great things she is doing now we might have attributed it to the change in treatment instead of that all her hard work and intervention to date is paying off for her.

While I don't think I will stop wondering if Emma would benefit from other treatments, it's more concrete for me that there is a big benefit in deciding the best course of action and then staying the course.  I also believe that we should adjust the course if it isn't right for our child, doesn't fit into our lifestyle, or is otherwise detracting from Emma's ability to experience life as a little girl instead of a patient.  Because, truly, life for little girls should be about play dates, fun at the park, day trips to the beach, squealing with delight from amusement park rides, playing with dolls and dressing up as a princess, and lazy days around the house.  And not all about therapy or doctor appointments if they can be helped.

I feel like this post is wandering a bit because what is so clear in my mind is so hard for me to put into words.  But, what I guess it comes down to is that I'm glad our encounter with the little guy happened because it made me more aware of my wonderings and helped me to put them into better perspective.  

***Note:  When selecting photos for this post I noticed that I have very few photos of Emma in therapy sessions but I have loads of her out and about enjoying life.  I'm taking that as a sign that we actually are giving her a pretty "normal" childhood.  And that I need to take a few photos of her in therapy so I can go back to them someday when I'm looking to remember when.....

Transitions

This week is all about change for Emma (and me!).  Firsts, lasts and unknowns.  The reason for change is that Emma will turn 3 this week and age out of the Birth to Age 3 Early Intervention Program.  All the therapists that have come to our house the last few years will bid us adieu and Emma will move on to pre-school.

The fact that we have been preparing for this transition for a while does not make this much easier on {ahem} me.  I'm not so sure Emma understands all the changes so she doesn't seem as effected as I am!  Today was the beginning of the lasts.  The last speech session with the marvelous Kate at our house.  Oh, how we will miss her!  She is an amazing therapist and person and we were so lucky to have her work with Emma and us.  This afternoon will be the last session with our OT who, while she has only been with us for a few months, was great.  Tomorrow will be the last session with the always upbeat, full of energy, Jahna!  She has been with us for about 2.5 years as Emma's Early Childhood Educator and we loved her from the very first visit.  Emma especially liked that Jahna didn't focus too much on her motor control and really was there to play and teach and sometimes have a small snuggle at the end of the session.  We are so happy that such a wonderful group of people were brought into our lives and will be sad to see their visits end.

The firsts will start later in the week when (as long as our IEP is finalized!) Emma settles into her first classroom.  Her first day of school with a whole lot of firsts - working with her teachers, aides, and therapists.  Joining a classroom of kids her age.  Testing out new equipment.  And, eventually, leaving Mommy at the door while she is immersed in school.  I think a few tears will be shed when that happens and I'm betting they are not from Emma.

And then there are the unknowns.  I have a laundry list of unknowns but I don't want to focus on that right now.  I just want to enjoy my little one and trust that we'll work these out as they come along.  

Taking care of me

I've been taking Emma to the hospital for therapy at least 2x/week the last 18 months. We see many of the same people week after week - parents and grandparents on a similar journey, many who we know by name.

I've observed them in waiting rooms, at the cafe, waiting for their cars. What I've noticed is that so many of them look exhausted, burnt out, in need of sleep and perhaps even a brief vacation. Taking care of a child with special needs requires a significant amount of effort and sometimes there just isn't much energy left over for the parent's to take care of themselves. I was secretly feeling good that I didn't look like the other caretakers and thought I was doing a good job of taking care of myself. Except......

The other day during Emma's therapy session I caught a glimpse of myself in the mirror - you know, the really flattering kind that is mounted on 3 of the 4 walls in the therapy room! - and I didn't recognize myself. I looked older, exhausted. I was dressed in so-so clothes with a body that showed the effects of my neglectful relationship with our YMCA membership! I looked like the other parents I see and it did not make me feel good. I walked out of the hospital that day and decided that I need to make time to invest in myself and my health.

I went to the gym that day and a couple of times since then. I've put on a bit of make-up a couple of times, too. In the morning when I get dressed I am choosing to wear more of the nicer clothes in my closet. I still have a long way to go, but I'm now marching in the right direction and it feels good.

The future is so bright

Emma started getting PT at the local children's hospital 2x/week about 14 months ago. When we started there was a little boy about the same age as Emma that had a session the same time as her and Emma just loved to see him. Both children were way behind on their milestones, but the little boy was able to sit up and use his hands better than Emma. However, he was a micro-preemie and had a lot of other complications that Emma did not have such as a feeding tube, bowel issues, etc. Eventually our PT time slots changed so Emma was no longer working out next to her buddy but we would see him in the halls and keep tabs on his progress.

This week Emma and her buddy had an overlapping PT session again. The little boy is now sitting, standing, pulling to stand, crawling, and walking with braces with a minimum of support and walking quite nicely in the gait trainer. He is also now talking and playing really well with toys. I was complimenting the little boy on all his hard work and a while later Emma's PT asked me if it is hard to see him doing all this. She was not asking in a bad way at all, but rather wanted a bit more insight into how us parents process this type of thing.

I was honest with her and said - no, he worked so hard to get to where he is at today and I applaud all his effort. I then said that I truly believe that it will be Emma walking like him in the not so distant future. (I didn't say too much about the other stuff like talking because that is not the point I wanted to get across to her PT. )

Now, I know not everyone thinks this about Emma, but I know my little girl. I know what makes her tick and I know how she acts outside of therapy sessions. I see the typical 2 1/2 year old personality she has trapped in a body that isn't letting her communicate this to everyone. I see great things in Emma's future, but they will happen in her own time.

After our conversation Emma's PT decided to put Emma in the gait trainer again to see what she could do. I smiled at that. I know she believes in Emma's potential or we wouldn't still see her, but I think our conversation reinforced her belief in Emma.

Here is a video I took of Emma last night right before bed time. She just had her bath so we didn't put her hair in a ponytail or tape her CIs on her head so they kept popping off, but we let it go since we were letting her have some fun walking to her Daddy. She is amazing.