Why is Lucy different?

At the Buddy Walk I overhead a kid ask their parent, "why is Lucy special?" The child was quickly pulled aside and shhhhed. I smiled, because I love having those conversations and I love those innocent questions. Those looks they give when they realize Lucy is 7. Simon is so interested in the fact that he is younger but taller. Lucy is growing up and so are her friends and I've began to wonder what questions they are asking their parents and since I've had 7 years to think about how I respond, I wondered if I could help in any way.

What is down syndrome? When Lucy was growing in my belly her body formed differently. I like to think that nothing went "wrong," it's just different. I wasn't sick and neither was she. We were lucky and Lucy entered this world completely healthy.

Because her body is formed differently she has to work harder for things that come easy to us. She had to work harder to learn to walk, eat, and talk. She has to work harder to learn things that are easier for us to learn. It takes a lot of practice to get something right.

But somethings aren't different.. She loves princesses and dancing. Loves to help me cook and set the table. She wants to do things for herself. She likes to pick out her own clothes and likes her nails painted. She loves to play pretend. She's doesn't like Dora as much as she used to. Her new favorite movie is Annie.

We do things like the Buddy Walk to show Lucy and others who have down syndrome that we love them and we are so proud of how hard they work. We value what they have to offer even when the world doesn't.  The Buddy Walk shows the world that it's ok to be different. Different is something that we don't have to hide. She can be celebrated.

Vacation

Last month we packed up the van and headed south for vacation. We love a road trip. Our kids do pretty well in the car, and we have the whole system so at midnight we left for Siesta Key, FL. We drove straight there. Stopped at breakfast stretch our legs. At lunch time we asked the kids if they would like to stop and eat or just eat in the car and get there.  The voted on getting there. It was our best time yet. 18 hours.

Our first week spent at the beach with my parents and my sister and her family. The kids loved the pool and it was always their first choice but as the week went on they warmed up to the ocean and the sand. Siesta Key is a great beach, white sand and gentle waves. Perfect for my little ones. My favorite moments from vacation were the times when I got to take kids out into the gulf and let them float on a raft in the waves.

Simon and Lucy also got to go with Nana and Papa to Disney World. (I'm still waiting for pictures) Ian stayed back with us. Our time with him was priceless. I don't think I have ever heard him talk so much. (He'll get his turn to go to Disney right before he goes to kindergarten.)

And what would vacation be without delicious food. We had some great treats a SweetBerries (FL's Whitts) and I ate all the shrimp I could get my hands on thanks to Phillippi Creek.

My kids are letting me know I've been on here too long so week 2 of our journey will have to come later.

Kindergarten Wrap Up

It's been almost 5 weeks since school let out and I'm finally getting down to posting.
 Right now Lucy is at the table finishing up her "school work." She wrote sentence in her journal and is drawing a picture to go with it. She wrote "I wet to f r s." (I went to fireworks.) In her picture there are blue, red, and yellow fireworks in the sky. She drew green grass and is working on our lawn chairs.  Last summer when we did this. I wrote the sentence and the pictures were mostly scribbles and any old color was used. She is now a writer.
 She can pick up books off her shelf and read the pictures and for some of them read the words. She has been reading her Reading A to Z books that were sent home. She is a reader.
She has grown so much and a lot of it is due to teachers that pushed her and gave her chances to succeed. We are so grateful for Mrs. Thrift and Mrs. Adrian.
On to first grade we go!!!

                                                                       Mrs. Adrian

                                                               
                                                                     Mrs. Thrift

Dance

I love to dance. You can just ask any of my college roommates and they will have some insight on just how much I love to dance. One of my biggest regrets from growing up it that I never really pushed my parents for dance classes. Lucy seems to share the love of dance also and I'm so thankful that she is able to take dance classes. This is her second year and I've really seen her grow. Her favorite part is the recital. She loves the stage, the special treatment and the applause! Oh how she loves applause!
This year the class was more difficult and we had to practice at home. That mirror in the dance studio can be so distracting!

This is her performance: Hard to watch in and tape at the same time....

We were so thankful that my parents, sister and grandparents were able to be there. Kevin parents really wanted to come but were in Texas. Ian went to a friend's house.

I'm sure there are many more of these to come!!

Lost Tooth

I've got some make up post to complete: a lost tooth, dance recital, last day of school, vacation, and a birthday. We'll start off with the lost tooth (I'm avoiding unpacking!)

I was surprised that it happened I thought it would still be awhile before she lost her first tooth. She didn't get any until after she was one. We noticed it was loose and took its time before it fell out but we were all pretty excited when it finally did.

Since then, she has lost 2 more and her big girl teeth are making their way through. She barley had room in her mouth for her baby teeth I can only imagine what will happen has her big teeth come in. She will make some dentist a very wealthy person.

The third tooth was lost on our first week of vacation. I put it in a baggie and we kinda forgot about the whole tooth fairy thing and since she didn't bring it up I thought we would just let it slide. Last night we got home and as I was laying her down she asked for the tooth. I guess in her mind the tooth fairy could only come here to our house. She always amazes me at what she remembers. So this morning instead of her tooth she found a dollar. She asked if we could go to Taco Bell. "Just Mommy and Lucy. No Simon and Ian." I love my girl!!!

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.