Little Bo Peep

A few weeks ago Lucy's kindergarten class put on a nursery rhyme program. They all wore simple costumes and recited the basic nursery rhymes. Lucy was Little Bo Peep. When we first started practicing the rhyme I was pretty nervous about her being able to learn it but it didn't take long and she was a pro.

Between each group they sang some songs. She is such a performer!

IEP Meeting

Last Wednesday we had Lucy's IEP meeting for next year. We dread those meetings. Most of the people that are around the table are people that I worked with before I decided to stay at home. There are many pros and cons to this arrangement. It's hard to truly fight for what's best for Lucy and at the same time be thinking about the fact that one day I'm going to hopefully be working with all these people again.
Overall it went really well and once again I found myself so thankful to be where we are. We have had a great kindergarten year and I have really appreciated how the school has worked to keep her fully included in the a.m. class. I wish there was some way to keep that going.
Our goal for this next year it to keep the pull outs at a minimum. I had asked if we could do PT before or after school. I asked for a 3/4 classroom to therapy room ratio for OT and maybe a 2/4 for speech. PT and Speech were pretty willing to work with those times.
Lucy's OT goals are writing and cutting goals. In a first grade classroom writing and cutting is happening 95% of the time. I'm not sure why OT can't happen in the classroom. The OT seemed pretty overwhelmed by my request. I suggested maybe there would be more carryover of skills if the OT met with the classroom aide instead of meeting with Lucy. She didn't seem to like that idea either.
We all talked together and decided the OT would happen before or after school and we would try and get PT in on the playground. I'm so glad that we insist that everyone be there at this meeting. The first date they had scheduled one of the therapists couldn't be there so we said that we needed a time when they could all be there. So we rescheduled. It felt great to be heard and even though they didn't all necessarily agree they worked to come up with a solution for all of us.
There were awkward moments and weird comments made but compared to other stories I hear I know I need to be thankful.

Country Club and Zoo Keeper

Recently Simon has noticed the country club that is in our town. We pass it ever day that we drop Lucy off at school. I'm sure it peeks his interest because we can see the pool. By country club standards it's pretty modest, but he's still interested. He has started asking if we can go there. I've been trying to explain that we will probably never go to the country club and have pointed out the community pool which is way cooler. I've tried to explain in many different ways why we will probably never make it to the country club. It's really expensive, it's only for members, it's not for little kids.... None of those seem to help his curiosity. Yesterday he said he was going to start saving his birthday money so that he could go there. I told him he would probably need to save all his b-day money from now until he's 40.
Looks like I'm going to have to just give it to him straight.

We go to the zoo a lot. Both Simon and Ian are really into animals, and on some days Simon wants to be a zoo keeper when he grows up. This morning Simon was watching animal planet and an old episode of the Crocodile Hunter was on. They were showing him at his zoo moving some of the "crocs." While they were watching they saw how he got bit on the arm. It was a pretty minor bit.... for a crocodile. Then Simon announce that he was no longer going to be a zoo keeper. I reminded him he didn't have to work with the crocodiles. He thought the elephants would be safer.

Simon

We wait until the kids turn 5 before they get to choose a sport to try. Simon has chosen soccer and the season has begun. He did so well at his first game. He scored 4 goals, passed the ball, and played his hardest the entire time. I was so proud!!

I also just had to share another Simon story. This is a bike that has been passed through all 3 of our kids. It's awesome! The handle in the back lets you push and steer. Right now we often let Ian ride it through campus because it's easier than trying to get him to stay with us as we walk.

On one of these walks Simon opened the little bucket in the back that often holds, rocks, cars, or sippy cups and noticed this little sign. "Hey Mom, look. It says no bowling pins." Priceless!!!

Kindergarten News

Last week I got a call from Lucy's teacher. She just wanted to let me know that Lucy was going to be switching reading groups. In Lucy's school they level their books with letters and they want kids to be at level C when they enter 1st grade. The teacher told me that they got some new students and that she gave Lucy the level B test and that she did well enough to move to level C. Lucy was ready to move on to level C!!
In moments like these I think back to the day of her birth and all of the fears I had about her disabilities. I wish I could go back and tell myself to not fear and that her abilities will far surpass any box I tried to put her in.



In other news, I got a phone call today from the special education teacher asking if we could switch Lucy's intervention time form morning to afternoon. (1/2 day kindergarten but she stays all day) In Lucy's IEP it states, "Lucy will attend all-day kindergarten. She will be fully included in the morning kindergarten session. Therapies and/or any intervention where it is necessary for her to leave the classroom will occur in the afternoon."
There has been a schedule change and they need to switch things for Lucy. They want to pull her out of class for a 1/2 hour of intervention in the morning. There doesn't seem to be any other option for the teacher. It's our first time in making the choice between learning "skills" and being fully included. There are pros and cons to both. This is a math intervention. Reading is definitely her strength. I really needed time to weigh the options but they needed to know today.
Since the answer had to come today we decided to keep things they way they are. This will change up what she does and who she works with in the afternoon but I hope it shows how we are committed to her being included.

Escape Artist

Right now Lucy is still gated in her room at night. There are two reasons for this. 1- When she wakes up in the middle of the night..lets say 3 am. She begins her day. If she is out of her room she helps herself to breakfast and puts in a movie. 2- She could and would sneak out of the house.

Unfortunately the gate only seems to slow her down. We can no longer keep her book baskets or toy stroller in her room and I've had to put one of those mats that you put under rugs to keep them from slipping under her toy box. She would find a way to slowly push her full toy box across the room and use it or these other items to scale the gate. So we had gotten every thing out and used the mat under that toy box. Success!! Not so fast mom.

This is the gate. You step on the gray pedal to open. Lucy does not weigh enough to open the gate.

So this is what she discovered. If she takes a pillow from her bed and lays it on the pedal it increases the surface area enough that she is able to jump and get it to open.

Seriously!!! Although this is very frustrating because I want her to be safe. It is the part or her personality that I love! I love that she doesn't give up. I love that she can look at what she has and try to solve her own problems. I love her desire to be independent. I'm frustrated and proud all at the same time.

So these pillows can no longer be in her room at night. I'm sure this isn't the end.

JRA Update

Our journey with JRA starter here we've had so much progress. Lucy hit remission and then it came back with a vengeance. Yesterday we went to see Dr. Spencer. I was hoping that we could stay off Enbrel and switch to a different less dangerous drug. No such luck. When we started JRA was in two joints. It is now present in both wrists, fingers, toes, both ankles, and both elbows. Her big toes aren't straight and she couldn't fully straighten her elbows.


It is hitting me so much harder this time around. At the beginning I just had this hope that everything was going to be fine. She was going to grow out of this and it was just going to be one of those things. When it comes to down syndrome she has always been one the right side of the odds. She has had no heart, bowel, or ear problems. I "felt" that JRA would work the same way.


Dr. Spencer put her back on a full dose of Enbrel and Naproxen. He told me I could discuss it with Kevin and talk about if we really wanted to do Enbrel or not but we just don't feel like we have a choice. So far it's the only thing that has worked for her and I just can't risk the permanent joint damage. I hate it's potential side effects and the fact that it really lowers her immune system, but she is pain free.

I started this post last week...Today I'm taking the advise of my husband and focusing on today not what could happen in the future. Today I'm thankful for this medicine.