Whimsical photos by Tara Lesher Photography

We recently won a photo session with Tara Lesher Photography after she read about the journey our children have traveled.  It was so generous of her to donate her time and talent for these photos.  It was such a fun session and she is amazingly talented. I wanted to share her photos here - they are so amazingly magical. The last one of Kendall and Cole is especially moving - the longer I look at it the more I see...

Forever in our hearts...

Cole's neurology follow up, IEP meetings for both and Cole's first music recital

All has been calm...almost to the point of feeling uncomfortably normal.  It's just about now that Johnny and I usually look at each other and wonder when the shoe is going to drop.  We've tried hard not to have that perspective, but it is sadly predictbile.  With that said, it's nice to feel normal and I do have a few updates.  

Cole was back to see Dr. Lavenstein in May and that went very well.  He was impressed that Cole knows his planets although Cole was frustrated with himself that he forgot one the first time he recited them (and truthfully he was able to do this a year ago).  Boring appointments are good ones.  Dr. Lavenstein did reach out to a colleague in OH to see if he knew the nystagmus surgeon we are on a wait list to see and he actually takes his child to him.  So it was nice to get another confirmation that this surgeon, Dr. Mertle, is reputable.

In addition to neurology, we had Cole's annual IEP meeting at the school.  Unfortunately we lost his Teacher of the Visually Impaired (TVI) last month because she is moving so we are breaking in a new one.  So far Valerie seems very good.  She met with one of the kindergarten teachers and got some worksheets in preparation for next year.  She has been working with Cole to complete them 1) with his CCTV 2) at 120% magnification on paper and 3) at 150% magnification on paper.  He is doing pretty well completing the worksheets but so far we are not certain if the CCTV helps.  It will definitely take practice to learn to look at the screen while writing below the screen so it's possible over time we will see improved precision.  I have confirmation that I can bring it home for the summer so the good news is that his TVI is pulling together worksheets for us to use over the summer.  We also have confirmation that he will have full day kindergarten since he will qualify as special needs.  We look forward to seeing how next year goes!  We know he's ready!

As many of you may remember, this is the big year of Reagan's eligibility determination. She completed the testing and I sat through an eligibility meeting where everyone involved in the testing presented their results. I have been worried about this meeting for over a year because there was a risk that the team would determine she doesn't need the IEP and that a 504 could suffice.  The difference is that a 504 provides necessary modifications (such as adaptations in PE) but does not include goals.  As with so many experiences, my feelings were torn when I was told that the team felt she should continue with the IEP and she was found eligible for services.  Unfortunately she fell below average in several areas which they felt could be assisted with setting goals.  She will keep her eligibility status now for 3 more years.  After the eligibility meeting we then had an IEP meeting to determine her goals and services. It was determined by the team that she will drop back from PT services to PT consult only.  She was also reduced to 20 minutes of weekly OT and maintained her 30 min of resource support in the classroom.  Although I am pleased that she will receive the support she needs, it's still discouraging that she needs support at all.  But that's how the cookie crumbles and we're glad she will be tracked closely.

In addition to these educational goals, Cole also performed in his first music recital.  He has been taking music therapy classes with Tracey at A Place To Be and they hosted a performance at their school in Middleburg.  The range of students at the school is from very young (3 years old) to elderly students.  The premise behind the school is that every person should have A Place To Be.  Some patients are overcoming depression, have suffered a stroke, have Downs Syndrome or have Autism.  It was very inspiring to see how hard some of the students worked to perform.  Some were just simply trying to form words, some just trying to depress the keys on the piano.  One boy that Cole sees every week at his lesson was very nervous and wouldn't come into the room.  When Cole saw this he went over and held his hand and said, "come on friend, it's ok, let's go together." It was so sweet! Cole was nervous too but told his cousin beforehand that it was ok because Kendall was there to help him.  Oh be still my heart...  He sang a song that he helped write called Spring Time to the tune of Sugar.  We couldn't have been more proud of him for standing in front of over 40 people and singing loudly!

In addition to his recital, Cole also tested for his TKD yellow belt this month and passed!  He has been taking TKD as a "cub" since November 2014 and started the older kid classes January of 2016.  He is very excited about getting his first big trophy and his "big" yellow belt!  Reagan also tested this month and is now a Super Brown Belt (then comes red, bo-black then black). We are so proud of her continued dedication! I also tested this month and I'm now a purple belt!  Reagan challenged me to sparring tonight in her bedroom before bed and was surprised I could keep up with her! They both continue to take swim classes and Reagan will wrap up lacrosse this weekend.  With only 10 days left of school they are very excited for summer!