Tuesday, September 25, 2012
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.
Thursday, July 05, 2012
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!!!
Tuesday, June 26, 2012
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....
Sunday, June 24, 2012
Friday, May 25, 2012
Friday, May 04, 2012
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.
Tuesday, April 24, 2012
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.
Wednesday, April 04, 2012
Wednesday, March 28, 2012
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.
Thursday, March 15, 2012
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.
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.
Friday, March 09, 2012
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.
Wednesday, March 07, 2012
Sunday, March 04, 2012
Monday, February 20, 2012
These last couple of weeks we have noticed that she was starting to limp a little and was complaining about her toes. We even got a call from school because they noticed that she was walking on her heals. The doctor suggested her taking 10ml of ibuprofen 3 times a day. I'm not too happy about it. I feel a little bit better after talking to the nurse today. We don't want her to be restricted or in pain and the side effects of ibuprofen are much less than the side effects of Enbrel.
To be honest JRA wasn't keeping me up at night. 75% of kids who are diagnosed grow out of it. I've just always felt that Lucy was going to be in that 75%. I'm starting to get a little nervous. She experiences most of her pain in her wrists and feet. If this pain continues it could really impact her progressing. I hate that the only thing we can do to help her is to put her on these serious medications. There's no surgery or anythings we can do to make it go away.
JRA is starting to keep me up at night.
Saturday, February 18, 2012
Today I took Simon shopping with me so he could spend his money. It was a totally different experience. He wanted to start off in the Imaginext section. Not much there for $5.
Then it was on to Thomas. I lined up the trains that he didn't have and he looked but was more interested in asking how much the bigger items were. I think he was hoping I would cave and give him some more money. Then he wanted to go check out the Cars. We walked through the same process there. Pointed out the ones we didn't have but he kept eyeing the bigger items... Then he decided he wanted to go to the Lego sections. Same process. "How much is this?" "It's $20. You can choose from these." "How much is this?" and so on. I kept threatening to choose for him or to make him wait if he couldn't decide. We finally made our way back to the Cars aisle and he decided on a car he didn't have.
I can't be too hard on him though because unfortunately I'm more like Simon than Ian. Sorry to my Mom and all my friends who have ever been shopping with me.
I'm always surprised on how different my kids are. Simon takes on the world with a totally different view than Ian.
Wednesday, February 15, 2012
This year I discovered that Walmart has photo vday cards. I got cards for Simon and Lucy for only $7.00. Lucy choose Tinkerbell and Simon choose Cars 2 (big surprise). Each card had a photo and a message. Easy. I know it would have been good to have them practice their name 20 some times but I went for the easy route since I didn't plan ahead as well. I did have them hand write all of their friend's names though. I decided to write each name in yellow marker and have them trace the letters. It worked pretty well.
That evening we had a little Valentines party with some friends. We had heart pizza and decorate your own cookies. It was perfect.
I was surprised on how easy it was to shape the pizza into a heart. I'm going to try some other shapes just for fun.
I can't wait until St. Patrick's Day!
Wednesday, February 08, 2012
Thursday, February 02, 2012
Notice how many girls... we need more friends with boys
I can't really believe he is 5. 5 is so big. I'm so proud of Simon. He is such a great kid. He's loving and kind. He is the perfect middle child.