Tuesday, March 15, 2016

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...