Seven Years

Seven years ago today was simply wonderful!  It was a Saturday morning and the air was crisp - exactly what you expect during Fall.  There was a slight drizzle in the air that morning but it was all clear by the afternoon.  The trees were full of color and there were lots of colorful leaves on the ground.  It was the perfect wedding day.

Me and Dad stop for a last minute comment before he walks me down the aisle.  

I woke up excited that I wasn't as sick at the previous night.  I was able to get up and walk around and I was so happy!  I called Chris that morning to see how he was doing and let him know that I was feeling a bit better.  I knew he was worried about me because I was very sick the night before.  Luckily the doctor had given me some great medicine to get me back on my feet and it did the trick.

We were saying that we couldn't believe we were actually married and laughed about it!

I remember our wedding day like it was yesterday and I'm stunned that seven years could pass so quickly.  My Dad made sure all the leaves that had fallen were swept off the Church steps for all our guests.  My Mom made sure our house was ready for guests to spend some time between our wedding and the reception.  I went with my family and friends and had my hair done and was surprised that there was so much extra time between my hair and make up and the time I had to leave for the church.  I didn't really know what to do with myself - I was anxious to see Chris and 2pm couldn't come fast enough for me.

The bubbles really made the day feel super festive!

That day we didn't know where our life together would take us.  What we did know is that it felt so right to be together.  That we were committed to meeting life head on together, for better or worse, for the rest of our lives.

And for the last seven years that is pretty much what we have done.  I couldn't have asked for a better partner in life.  Both of us truly believe that it was God that brought us together (and keeps us together!) and we feel blessed.

Thank you, Chris, for loving me so very much the last seven years.  I'm not sure what the future holds for us but I am excited to meet it head on together.

Preschool - One month recap

The past month has gone by so quickly that it's hard for me to believe that Emma is wrapping up her first month in her preschool.  Emma attends school from 8:30am - 11:15am Monday through Friday and this is new for both of us.  We are not accustomed to being apart and I'm happy to say that we are both mostly adjusted to the change in our routine.  It requires an early rise time and neither of us are morning gals so I'm happy that Chris is around in the morning to make sure that we are up and about at the proper time.  Our routine is pretty streamlined at this point with:  time spent on the potty, drinking a breakfast smoothie, getting dressed and AFOs on, double checking to make sure her backpack is all set, and packing a snack and drink.  School is at the other end of our county so I drive Emma in and have the bus drop her home.

Emma settled into preschool the first week without any issues and that could be because I stayed with her most days.  She started to cry at drop-off during the second and part of the third week.  It was the screaming sobbing cry that makes me want to run back and take her home with me.  She knows when to pull out that cry and that it rips my heart to shreds.  And, no, she wasn't laughing and smiling a few minutes later.  I even had a couple of calls from her therapists letting me know how unhappy she was and hoping it wasn't them.  Sigh.  I - umm, I mean we - toughed out the 6 days of sobbing at drop off and they were replaced by smiles on day 7.  Oh Happy Day!!!!

Emma has a communication notebook that we send back and forth to school.  Each day the teacher adds a sheet of paper with the following sections:  play time, circle time, small groups, snack time, therapy, other, notes/comments.  In each section there is a set of PECS symbols and she circles the items they worked with in each section.  This is really nice because I can look at the symbols and go over Emma's day with her.  There is also a sheet that has the equipment along with an entry for the time spent in the equipment.  One day I requested information on what equipment she used and how long she was in it so I know how to plan the equipment we use the rest of the day.  The very next day this sheet was added to the communication notebook.  Fantastic!  I also asked about the potty and her snack and they added another sheet that updates me on them daily.  Additionally, on the days that Emma has therapy the therapist includes an update in the notebook so I know what they did in therapy that day.  I feel very well informed of what is happening at school and this makes it easier to part with my girl every day.

Emma has a lot of goals on her IEP.  They are not easy goals and I'm happy that the team set the bar pretty high.  I'm even happier to report that after only a month of school Emma is rising to the challenge.  My focus for Emma is communication.  Yes, we have goals for PT and OT, but I'm not as focused on them at this moment as I am on getting a reliable, usable mode of communication for Emma.  The team is spending a lot of time reinforcing communication in every interaction with Emma and this is working great.  Central to her communication is having her CIs fully operational so first thing each morning the hearing teacher checks her implants.  Emma is starting to say some sounds during the hearing check - this is a huge accomplishment because Emma usually reserves this for special occasions only.  There is no doubt in any of our minds that Emma is hearing well and using her hearing quite effectively and that her real challenge is expressive (not receptive) communication.

The speech language therapist (SLP) is working with Emma individually, in the classroom setting, and then with the team to instruct them on how to carry-over communication.  Historically, Emma is non-participatory in many of her speech sessions.  It's just very hard for her to communicate vocally or physically and there has to be a big payoff for her to participate.  This SLP gets it and is having success with Emma participating.  She wants to move towards a scanning communication system initially and then test out some eye gaze systems.

Many scanning systems only have a 2 second delay before they move to the next item.  We think this might not be long enough for Emma to hear it, process the information through her implants, and then get her motor plan together enough to hit the switch.  Two seconds really isn't that long when you take Emma's hearing and physical challenges into account.  So, her SLP tested out a head switch with Emma and she was able to use it quickly without much training.  Her idea is that Emma could use two switches for a scanning communication method - the head switch to go from item to item and a hand switch to select the item.  This would give Emma as much or little time as she needs to say what she wants.  I was skeptical at first because it is already hard to keep Emma's CIs on her head without adding a head switch but it seems to be working well and isn't knocking off her CIs.

This week the SLP entered the following information in her communication notebook:

• Tuesday (her pull out for speech day):  Emma had a good day today!  We started working with 2 switches (on the computer) and she did great :-)  Each switch has a different function - example:  one switch adds one more block to the tower and the second switch knocks down the tower.  
• Thursday (SLP pushes into the classroom day):  We used 2 switches again today in the classroom - much more distracted than when in my therapy room, but she still did well :-)  Lots of choice making with 2 pictures also.  

This Mommy is over the moon that Emma is not only participating in speech, but doing so in both a one-on-one and classroom setting!  The gains she has made in the last month are more than her entire first year of preschool at the old school.

I'm filled with hope for Emma and for us!  Our decision to move was good for so many reasons and I'm so happy that Emma is in a program that is not only meeting her needs but also providing academic challenges that Emma is meeting head on.  I'm looking forward to see what happens as the year unfolds.

Swim Lessons

The girls love swimming so when I found out about a gym near our new house that has a therapy pool we had to check it out.  Emma has a hard time regulating her body temperature which makes swimming during the non-summer months a challenge.  Even in a heated pool she turns purple pretty quickly - usually within 15 minutes and has to get out.

The gym is attached to a hospital and they use the therapy pool for some PT sessions and it's usually around 88 or 89 degrees, perfect swimming water for Emma.  It's also fairly shallow and ranges in depth from around 3 feet to 5 feet making it the perfect pool for Julia.  After our trial period, me and the girls joined.  We've gone several times and decided that Julia would benefit from private swim lessons since she is very close to swimming.  The aquatic team has an instructor that is trained and certified to teach swimming to children with disabilities and once we found out Julia was matched with that instructor for lessons we signed Emma up for one.

Julia is doing really well in the pool.  She can swim a long distance underwater, kick her legs appropriately and swim with a noodle in deeper water.  She is very lean, though, so her body wants to sink instead of float and Miss Tia is doing a great job of teaching her technique and floating.  Plus, she is very funny and Julia has a ball during her swim lessons.  According to Miss Tia, Julia is well on her way to being a swimmer.  Here is the best photo I have of Julia because she did a lot of underwater swimming the day I brought my camera.

Emma was signed up for one lesson, but we liked how it went so signed her up for the full 7 week session like Julia.  Miss Tia was completely comfortable with Emma in the water and quickly figured out her amazing ability to pay attention to everything going on around her and not so much to what is happening right in front of her.  Then she figured out a way to keep Emma's attention on her and follow a few instructions - no easy task considering Emma can't wear her CIs in the water and she has an even worse attention span when she can't hear!

The main focus of the early lessons will be on breath control.  Making sure that Emma knows to hold her breath if her head goes under the water and to try and get her to breath out.  Emma doesn't blow bubbles or blow outside of the pool, so I'm not sure about this goal but Miss Tia said Emma is trying and we'll see if she is successful.

She is also working with Emma pushing off her hands so she can learn that her body will move in one direction or the other based on her movements.  She even was able to get her arms all stretched out and then Emma would pull them to her body and she would move which I find amazing since I can't get that to happen!  Our focus is mostly for back swimming.  And Emma is either held the whole time or uses a floatation device - we have the Danmar swimming collar and use this for the last 5 or 10 minutes of the lesson.

This is not aquatic therapy, but rather swim lessons.  It's pretty fun, actually, to have Emma in her own swim lesson that isn't therapy but sort of is therapy at the same time if you know what I mean.  Miss Tia can't promise that she'll be able to get Emma swimming independently and I think that is more of a long term goal.  Right now keeping her head out of the water (neck control, Emma!) and knowing to hold her breath if her head goes under, along with working on trying to stop her from arching her back so much would make me really happy.  Emma has so much fun in the pool and really has shown an interest in wanting to move/swim but I need guidance on how to help her make this happen.  Miss Tia is doing a great job of showing me new things to try with Emma in the water and it's made swimming even more fun.

I'm so happy we were able to find a truly inclusive swim program that works for us and an instructor that seems to be a great match for both girls.  I'm looking forward to seeing how they are doing in the water at the end of the 7 week session.

Ask me a question

We've been working on communication with Emma for a very long time.  And to me, it seems even longer ;-)

Emma had been doing great with a Yes/No response on the iPad, but the iPad just isn't always available for a question.  And then we moved and we have lots of kids in the neighborhood that include Emma and they ask her questions and it's awkward for her to have me get in the way with an iPad for her to respond.  It totally ruins the moment and then Emma ignores the iPad and me because there are kids around.  So I decided to try a method that works well for another family that I know.  It's low tech, super easy, and everyone including the kids can use it without any help.

Let me tell you what we are doing.  Basically, whoever wants to talk to Emma can ask her a question and then you hold out your right hand with your palm open facing her and your left hand fisted facing her and ask her yes (shaking right hand) or no (shaking left hand).  Emma thinks about her response and then reaches out for the appropriate hand.  It didn't take much time to get her to be very accurate with this method.  And since we've been using this a few weeks now she knows which is Yes and No so we don't have to shake it anymore.  I'm hoping that eventually you won't even have to say Yes and No when giving her the hand signal but that could come in time.  For now I'm super excited that we have a method that Emma seems to want to use and that anyone can use with Emma.  It's amazing how many people talk to Emma and now I don't have to answer for her all the time - good for her and for me!

The key to this method is consistency.  Keeping the Yes and No always on the proper side.  Emma's speech therapist at school talked with me about maybe replacing the Yes No with a card on her tray because apparently some people working with Emma have a hard time remembering which hand is which.  I nixed her tray idea pretty quickly because Emma is very rarely in equipment with a tray at home, we want to use the same method regardless of where she is (school vs. home), and it's not easily implemented with kids.  The reality is that Emma should be interacting with everyone and it's especially important that her peers know a way to involve her in a discussion.  I also said that her aid should know Emma's Yes and No and be able to remind anyone that needs a reminder.  Her SLP agreed with me.

But our discussion had me thinking and so I offered to create a card to hang on her wheelchair and other equipment so everyone would easily know her Yes and No.  The card I made is at the top of this blog post.  It's a 5" x 4" laminated card, so large enough to see easily but not in your face large.  It complements the other card hanging on her wheelchair that introduces Emma to people.  It's amazing how many people read her introduction card and then come up to her and talk to her.  Thanks to Tara over at Endless Jubilee for the introduction card idea!

Emma's introduction card.  Might be time to update this with a more recent photo - my girl is growing up!

Potty Talk

Right around Emma's third birthday we started using the potty with her.  She seemed to get the hang of it pretty quickly and was really proud of herself when she went.  We tried to carry over the potty training at school but they weren't really good at putting her on the potty.  They didn't seem to want to do it and only after I asked them every....single....day about the potty did they put her on a couple of times.  Emma never did go on the potty at the school for them and I think it was mostly because the infrequency of it and the lack of a supportive potty and ample amount of time allotted to potty.  Needless to say, that made it pretty hard to potty train our little one.  Plus, it was really hard on my back and so we put the potty training on the back seat for a while.

This summer we took a long trip to Ireland and moved, putting potty training to the very bottom of my list of priorities.  Truthfully, it's much easier to just change Emma's diaper than figuring out all the intricacies of  potty training a non-verbal, non-mobile little girl.  Once we settled down in the house we figured it was time to start potty training again and started up again with our little wooden potty.  We also talked with her OT about ordering an adaptive one for our house.  Potty training was ON!

Emma at fountain in Love park.  Fountain is purple in support of ending domestic abuse.  She looks so grown up!

We set a schedule to sit Emma on the potty and decided to stick to it for a few weeks so Emma could get the rhythm of going on the potty and could start to anticipate the times she would get on the potty.  My idea is that if she knows there are certain times she will get to go, then she will start to hold it in anticipation of her next opportunity.  Right now she doesn't tell us when she has to go, but she does make sounds when she is all done and ready to come off the potty so that's at least a start.

Key to all of this potty training is carryover at school.  Emma really is becoming a big girl and she really wants to do big girl things and going on the potty really makes Emma proud.  I didn't want our second attempt to fail like the first and I was so happy that her school was completely on board.  The day Emma started school they set her up in a potty that gives her amazing support.  It was fitted and cleaned and available for her exclusive use on her second day at school.  The first time she used it, she went on the potty!  Horray for going at school!

We've been working on potty training for a couple of weeks now.  It's going ok.  Some days are better than others, but the last two days have been amazing with lots of dry diapers!  The biggest challenge I have is what to do when we are out in public?  Public restrooms are so not set up for us.  And from what I can tell there aren't any portable potties for kids like Emma.  I've asked around and no one has any great solutions.  Maybe there just isn't any good solution, but if anyone reading this has any ideas please let me know.  In the meantime I'll dig out our traveling fold-up potty seat we used for Julia and hold Emma on the potty.  I can already feel my back hurting thinking about it ;-) but Emma is so worth it.

Here is our current schedule of when we place Emma on the potty:

• After waking up
• When she arrives at school she has her hearing/CIs checked first thing, then off to the potty.  That is about 8:45am.  On days when she doesn't have school, we do ~30 minutes after her morning drink
• Snack is at 10:30am so her next potty time is 11am.  
• School ends at 11:15 and she arrives home around noon and I put her on the potty again once she gets home.  
• After lunch but before nap - she doesn't usually go at this time so I might end up taking it out.  
• After nap - she has been waking up dry and so this is a key time to put her on the potty!
• Before dinner
• Before Bath
• Before Bed

Emma is using the Rifton Blue Wave Small at school and we are ordering the same one for our house.  She looks great in it, has show that she has no problem using it successfully, and it's nice to be consistent.  Plus, it has a couple of features that are nice like going directly over the toilet or using a pan, a tray to set her arms to keep herself upright (might not need to use all the straps), and wheels to move it around easily.  I have no idea how long it will take before we get it approved so we are using our wooden potty seat in the meantime.

My big girl getting on the school bus!

Her school also set-up a checklist that they include in her communication book everyday.  It has four columns on top:  Sat on Potty, Urinated on Potty, Urinated in Pull-up, Notes.  It has two columns on the side:  8:45am, 11am.  Her aid puts a check in the appropriate spots.  This morning she had a check at 8:45am sat on potty, 8:45am urinated on potty, and 11am sat on potty.  I love that I know what is happening with potty training at school.  I love that they are so responsive to my requests - I only asked once if they could let me know if she is "successful" on the potty and the very next day they started to include this checklist.  They also made a checklist for her equipment and time in each so I know what equipment is used during the day and can make decisions for what to use at home.

All smiles when she arrives home from school!

I'm hopeful that this time Emma will be fully potty trained.  I'm even hopeful that she'll have to add princess underwear to her Christmas list.  I know pull-ups will continue in our future - especially when an accessible bathroom isn't viable and for bedtime - but I am so very proud of how Emma is doing and will follow her lead to when the timing is right to take the leap forward to underwear!