IEPs, a piano school fail and a new puppy!

It has been a pretty quiet month enjoying some time without doctor's appointments or therapy but all that will change soon enough!  We got a call this week from INOVA Loudoun Hospital and we are FINALLY coming off the wait list for Cole to start back with an OT.  We already have a tough schedule Wednesday afternoons with CCD class for Reagan and Tae Kwon Do for both, but it's important and we'll make it work.

We had IEP meetings for both kids this week. I always find it interesting how much of a roller coaster I find the preparation for these meetings.  I read through the "strengths" and think "wait, but there are so many things that are hard for him/her".  Then I read through the "areas that affect education" and think "wait, but he/she is so smart".  For those not familiar with the process, IEP goals are reviewed annually and most of them are done in the Spring.  Then every three years the child needs to go through eligibility to determine if he/she still needs services.  We were told Cole will be always be found eligible since he is legally blind and that will not improve.  And as much as I like knowing I won't have to fight for services, it makes me sad to think we will always go through this process with him.  His meeting went well although I have a lot of apprehension about how the CCTV will be integrated into classroom activities and how he will do in physical education.

Reagan's review also went well although given she is currently going through testing for eligibility, we will be meeting again in May to be presented the findings and determine if these goals can be carried forward. We will know soon enough!

In other news, we decided after 10 days of the kids practicing taking their stuffed dogs to go outside, they got to pick out a new puppy!  On March 6th we adopted Shelby, a 4 month old labrador terrier mix born on November 5th, 2015.  She is the sweetest of puppies and is bringing so much joy to our family.  Reagan especially has taken on many of the responsibilities of feeding, toileting, playing and most importantly cuddling. Shelby has truly been a blessing and we are all having fun being outside more, taking her for long walks and cuddling.

As the weather has warmed up, we have started thinking about summer and looking for camps.  I learned about a music program in Ashburn called Notes and Beats. I was pretty excited that they have summer camps and after school programs.  I took Cole for a trial lesson last week and it was horrible.  Although briefed, the piano teacher didn't seem to realize that Cole is legally blind.  Something I am realizing that perhaps needs more explanation.  I find myself not expanding if there are no questions, but I learned a lot after this experience about how I need to approach new situations with him.  Cole did VERY well if you ask me.  He sat attentively during his lesson and was very engaged.  He kept falling off his stool because he was leaning forward to see the sheet music and was reprimanded twice by the teacher.  After being reminded he was blind the teacher moved the bench forward and that helped a lot.  Halfway through Cole turned and looked at me with a goofy smile and gave me a thumbs up.  But at the end the teacher said that unfortunately he doesn't expect Cole will be able to keep up with the sheet music since the notes gets more complicated as he progresses.  I was SO caught off guard I immediately said, "no problem, thank you for your time" and we walked toward the door.  Cole looked up at me with those precious eyes and said, "Mom, how did I do?"  As my eyes welled with tears I told him how well he did, how proud of him I was and remarked on his excellent listening skills.  As we walked through the front lobby the woman at the front desk asked how it went (with a waiting room full of people) and I said, "well unfortunately not very well.  Apparently your program is unable to accommodate for his visual impairment."  She looked shocked and offered no solution or apology.  It took me back to the day I was touring preschools for Reagan and the person told me she would not be a good fit if she couldn't pull up her pants after toileting (still hard for her to this day).

We will find another music teacher who can help Cole.  I have no question about that. I don't even want to consider working with a program that doesn't have a solutions based approach. However, I am continually surprised at how I ride this roller coaster feeling like my kids can fit in like other kids and then get smacked in the face with the harsh reality that even in 2016 there are places that do not understand the importance of supporting children with different needs. I thank God for all the amazing people in history who have helped get us to where we are today, but I am amazed at how far we still need to go.  I feel as though I failed those coming behind me for not educating this teacher, but as I walked outside my emotions took over, I picked Cole up and I started to cry.  Not for me, but to think there are people in this world who will approach my children in a way that they will have to prove themselves to be worthy.  It is so painful as a parent to see this and I want to strip this ignorance.  I want to place my children in a bubble where they feel loved, accepted and capable.  But I remind myself that my role in this journey called life is to educate them on how to advocate for themselves.  Not to tell the teacher to push in the bench, but to ask Cole if having the bench closer would help him to see the notes better.  Teaching my kids to advocate is a lot more work than helping them through life, but as they told me at the Department of the Blind, one day, if I am lucky, my children will move away and be self sufficient.  I will not always be there to help them.  And to make that happen, our job as parents is to give them every skill they need to survive and thrive. And so we continue...

GI, Low Vision, a Blizzard and a TKD BLACK BELT!!

Is it February already?!  We've kicked the year off and have some fun pictures to share.  It started with the Blizzard of 2016.  We got 30" of snow between Friday night and Sunday and didn't see a plow until Wednesday.  Unfortunately my Saturday flight to Amsterdam for work was cancelled.  And although I was able to get a flight out Monday, we had to haul my luggage up the street and have a friend pick me up since we hadn't been plowed out.  The kids were out of school Friday and the entire following week.  Then had a two hour delay the following Monday and Tuesday due to ice conditions.

And although we had a lot of fun in the snow, it was tough to get through since it was so high.  Cole is only 41" tall and Reagan is 48" but it's still tough to walk through when it's well above your waist.  We were able to build a snow woman and do some sledding though.

After the snow started to melt, we had a GI appointment with Dr Descanctis as a follow up.  She was not happy that we are still having weeks where he will have 2-3 days without a stool (yup, I have a chart).  So she wants us to be more aggressive when we have a day without and wants us to start a strict "sitting" policy three times each day to build routine.  It's tough to get him to sit very long, but we'll do our best.

We also had another appointment with the low vision doctor, Dr. Mojallal.  Since the integration of the magnifier at school (the loupe) and the Vision Assist app at home, Cole often asks me to magnify things.  Generally it's small toys where he wants to see the detail, like a Spiderman figure's face.  Unfortunately the doctor said he isn't quite ready for most of the solutions that are available given his young age/ability.  He is hopeful that he'll be ready perhaps by the start of the next school year. His suggestion was to purchase a CCTV for home use.  I emailed the Department of the Blind to see if they have any we could borrow, but they don't.  The device for school was approved, so it's possible he could bring that home, but I am worried about it traveling in a backpack on the bus (even in a case).  We will research alternatives and then decide what makes the most sense.  It's possible we could consider a document camera with an iPad but we
need to do a little more research.  It breaks my heart when Cole comes to me and asks me to make something bigger, but I am hopeful over time that we will be able to have the right tools.  This morning he wanted to talk through solutions for how he could get to Saturn and skate on the rings so I am very optimistic that his creative nature will be a huge asset as he gets older.

In addition to the doctors appointments, both kids had their Tae Kwon Do belt tests this month. Reagan is very excited to be a Super Blue belt.  She started January of last year and has progressed through white, yellow, orange, green, purple, and blue.  Next, she will need to progress through brown, super brown, red, bo-black then black belt.  She still enjoys going and it is SUCH good exercise for her! Master Choi even commented on how impressed he is that she is now able to fully extend her left arm straight.  This was not possible when she started a year ago. I am hopeful she will continue for another year and try to achieve her black belt but time will tell!

Cole has also been at Tae Kwon Do in the cubs class since last January.  He has progressed through all the cubs belts: white, yellow, green, blue, red and is now a black belt!  I remember many times last year leaving class in tears disappointed that he struggled so much to pay attention, sit when asked and follow instructions like the other kids his age.  Words can not explain how proud I am of his accomplishment today.  It took a lot of patience, persistence and dedication for him to accomplish this level.  We have seen such amazing progress in this little man and I'm so proud to be his mama.

Although he could have moved to the older class in October when he turned 5, we chose to keep him in cubs and let him finish through black belt.  This week he started with the big kids and although the new structure will be an adjustment, he did very well.  He will keep his black belt until his next belt test and will then start at yellow (skipping white).

And in the blink of an eye, 2015 is a year of the past!

Wow, I can't believe I'm writing the last post for 2015!  It has been a fun filled year with a lot of adventures.  Our hope for 2015 was simple - less doctors appointments and no hospitalizations.  Unfortunately that wish didn't come true, but overall we are very blessed to all end the year healthy and happy!  And that alone is a true blessing.  This year we had 32 doctors appointments and 101 therapy appointments not including the 3 visits with vendors to look at assistive vision technology.  How do I know this?  Because if it weren't for the Notes App on my phone I would surely miss an appointment or forget to schedule one!  This year was a little heavier with appointments due to the addition of four new doctors to Team Bischoff: 1) Cole's Low Vision Specialists, 2) Cole's GI 3) Reagan's dermatologist and 4) Reagan's endocrinologist.  We are hopeful that things will settle down in 2016 since we don't expect to follow up with the last two and hope to have less GI appointments in the coming year.

We had fun celebrating Christmas with family.  We spent the usual Christmas morning with the Schweisthal family for quiche and fruit soup and spent the afternoon with the Bischoff's enjoying a turkey dinner.  Both kids fully understood Christmas this year which made it so much fun.  They truly understood getting AND giving and had fun thinking about gifts for other people.  And most of all, they loved playing with their cousins!  When I put Cole to bed Christmas night he said, "hey mom, do you think someone bought presents for Kendall in Heaven?" My sweet, sweet boy to think about his sister....she is never far from our hearts.

We also had a fun New Years Eve celebrating with the Golino's.  Usually we play the countdown from the previous year a few hours early and put the kids to bed.  This year Netflix had pre-recorded countdowns in different themes.  So we watched King Julien's New Year's Even Countdown at about 9pm.  Midnight is still WAY too early for a 5 and 6 year old.  They had fun with their noise makers and hats. I'm sure one day they will figure out our trick, but until then it's nice not having SUPER exhausted and cranky children on New Year's Day.

I feel like we blinked and 2015 is in the rear view mirror.  Johnny had a busy year at NCMEC.  He also started working every other weekend as a Battalion Chief for New Kent County Fire and Rescue Department (near Richmond) and took the Emergency Medical Technician (EMT) course.  He had a very intense Fall between both jobs, this class and ER rotations to fulfill his certification.  He passed the course final, State practical exam and the National registry written exam so he is excited to have EMT as part of his credentials.  In addition, he decided to apply to George Washington University's Engineering Management Doctoral program and was accepted!  What he didn't know is that all applicants would be required to take a Fall Calculus pre-requisite course which was every Saturday from October through December.  He passed with flying colors and will start the program in January.  Luckily he had vacation time between Christmas and New Years and we've had a nice relaxing week to just be together as a family.

I also had a busy year with work focusing my consulting business primarily on Boeing, Defense Information Systems Agency (DISA) and INHOPE.  I look forward to continuing several projects going into 2016 and love having the flexibility of working as a consultant so I can book appointments as needed.  Work took me to Lisbon, Portugal last month and I will be going to Amsterdam in January.  Although juggling the kids schedules while traveling is challenging, we have an amazing nanny, Megan, who watches the kids and I trust her implicitly.  That helps SO much!

As I send my 2015 family photo album to print and reflect on all we've done this year, I'm feeling very nostalgic.  We are so blessed to be able to give the kids what they need. And although it is often exhausting and stressful wondering if we are making the right decisions and advocating enough, it feels good to see how well they are doing.  This was a big year for both kids and we saw significant progress from both of them. We are hopeful to make 2016 a year without hospitalizations and a year more focused on fun and learning than on doctors and appointments.  We wish you and your family a happy and healthy 2016 and thank you for your continued support and prayers!

And with that, I leave you with the following quote that truly speaks to me: "You are braver than you believe, stronger than you seem, smarter than you think, and loved more than you know."

Humanware Prodigy Connect 12 and the Loupe "aka Mrs. Fuzzy Hands"

Well we had a fun week with the kids having their holiday parties, school PJ/movie party and delivering all the gifts to their teachers, therapists, bus drivers and other people who support them.  We also had an appointment at ITG to have a demonstration of the Humanware Prodigy Connect 12 magnifier that was recommended by the Department of the Blind and Vision Impaired (DBVI).  ITG is a distributor who would also be responsible for repairing equipment if there are issues.  So this relationship is an important one.  It was a good appointment and there were many details to consider.  However, it looks as though we may have narrowed down our choice and will be moving forward with requesting this unit from the Assistive Technologies Department in Loudoun County.  We are hoping they recognize the importance of the multiple capabilities this unit provides.  And although the $3900 price tag makes it a big decision, the comparable options are not less expensive for what they provide.  This device is a mounted Samsung tablet with customized software.  First, it allows Cole to place a worksheet under the camera and magnify it so he can see well enough to complete the worksheet.

Second, it does OCR, or Optical Character Recognition.  So you can place a book under the camera and it will digitize the information and read it out loud.  Cole was very quick to learn how to "pinch" to make the image larger/smaller and quickly learned the settings to change from Heather to Ryan.  When the person from ITG asked which voice he liked to listen to better he said, "I like girls silly."  It was very funny.  Third, in addition to helping Cole complete worksheets and read content, he will also be able to see manipulatives more easily.  Hands-on work is a big part of kindergarten where they look at coins, as an example, and learn how to tell the difference between them.  He has a hard time seeing the difference between a quarter and a nickel.  So this will enable him to put them under the camera and view them larger to see the detail.  Fourth, there are no more "chalk boards" in Loudoun County since every classroom has a promethium board.  All content that the class views on the board will be able to be viewed from his Prodigy Connect.  The fifth benefit is that it has a long distance camera that he can clip onto his desk and the image immediately shows on the screen.  So if he needs to look at something on the wall of the classroom (Reagan had wall words) he can use the distance camera.  And sixth, this is a Samsung tablet which runs on an Android platform.  Historically, assistive technology for vision has required software installation.  If you want the updated features, you would have to send the equipment back to the distributor for the new software to be loaded (therefore your learning tool is unavailable).  Additionally, you have to pay for these upgrades and some hardware may not support the new software.  With this device, the software updates are done over the air as they are done with a new phone software. This is a huge benefit and cost/time saver.

We have had two appointments with low vision specialists, one phone conference, and three appointments with technology experts.  This has been a long process and a difficult one since there are so many factors that require consideration.  The school has to decide what he needs now.  The advocate in me knows it'll be harder to justify a change later if what he has is "functional" so I'm also thinking ahead.  Then there's mom in me who is deathly afraid of how he will feel being different.  Whether his desk will have to be isolated to fit this huge device.  My friends tell me he won't notice.  The questions we've gotten about Reagan's brace tell me otherwise.  Kids are not mean, just inquisitive.  Kids at 5 feel different if someone doesn't like their sandwich. It's a "normal" to feel different and I know kids need to deal with that....just doesn't mean I have to like it.  I'm hoping he will be the cool kid who gets to have a "laptop" at his desk.  I've already decided we need to start thinking about a name for it.  More to come on that...

The hard part is not the logistics and implementation of the technology, but the reality that his vision really is this bad.  At his class party he needed to write his name on the present he made for me.  I knew they purchased the magnifier for him but hadn't seen him using it since the low vision appointment.  The teacher clipped the Loupe magnifier on his glasses to help him see to write.  The good news is that he smiles and it helps him.  But if it weren't for the parents watching him and asking me what it was I probably would have broken down into tears.  We are so blessed he has sight.  We are so blessed he is smart enough to want to write.  We are so blessed that he is not having to fight for life right now.  But that doesn't ease the pain in knowing that the days ahead will be hard.  He will be teased.  And so help me God if I hear one child make fun of my little miracle...let me rephrase...God give me strength to raise my child to know that he is a walking testament of your Glory...

And as we take this in stride, I'm already working on a design to customize the sticker on the Loupe.  Last thing I want is my son having a phone number written on his face.  Apparently he calls it "Mrs. Fuzzy Hands" so we are trying to come up with something creative.  If anyone has ideas please send them my way!  And just like that, school is done for the year, work is wrapping up and we're looking forward to some much needed down time over the holidays to spend as a family.  God is good...