Wednesday, June 30, 2010

(Almost) Wordless Wednesday

We headed to the horse farm on Tuesday this week and I grabbed my camera this time - I sure am glad I did! I think I could get lost in these photos.....

Chris was able to go this week and Emma sat up straight and had a great time riding. I think this is because the weather was cooler today than the last couple of rides, but it could be because Chris was walking with her. She is a Daddy's Girl!

Since Chris walked with Emma, Julia and I hit the vending machine for a drink and found a spot to relax for a bit. She even posed for a few photos for me. As I look at this photo I'm struck by how quickly she is growing up, how wonderful the innocence of a 4 year old truly is, and how thankful I am for my little girls!

How blessed we are!

Tuesday, June 29, 2010

Please Support Senate Bill S. 2860

I've been doing quite a bit of reading on education and came across a post at The Wrightslaw Way regarding a restrain/seclusion bill that the House of Representatives passed and is now in the Senate for approval.

The bill - H.R. 4247 for the house, S. 2860 for the Senate - addresses the issue of restraint and seclusion in our school system. According to the Council of Parent Attorneys and Advocates, roughly half of of all states provide little or no protection against restraint and seclusion. The result is that each year hundreds if not thousands of students are abused in school, resulting in trauma, injury and death. Passing this bill will requires states to set a minimum standard to the federal law on restraint and seclusion.

To learn more about this bill, please look at this blog post that gives more information around the bill, what opponents of the bill are saying and why it is so important to all our children - with and without disabilities - to ensure this bill is turned into law.

For our children that are not verbal and cannot tell us what is happening in schools, it is imperative that they have protection against abuse. Please contact your senators and ask them to vote FOR bill S. 2860. Then, please ask your family and friends to contact their senator so we can get this bill approved and protect our children.

Thank you for your support!

Sunday, June 27, 2010

Blue Rocks Fun!

Saturday was filled with fun, fun, fun. We are having a terribly hot spell here so we packed up and headed to the pool on Saturday. The Y was having a family fun day and that was a cool bonus for us since we didn't know about it. The girls got tattoos, played a few games (and won some small blow up beach balls) and we all enjoyed the free ice cream before heading into the pool for a swim. Julia has been making a lot of progress with swimming and we were throwing the blow up ball and she would swim to it while using her swim noodle. She is getting really fast at swimming and we were having races to see who could get the ball first. Then, we ran into her friend from school and the girls played with the ball and had a blast. It's so fun when we run into kids we know - the girls always have a better time than when they only have Mom and Dad to play with!

Emma is starting to really move her legs while in the pool and I've been working with her to move her arms and they are definitely getting looser. The swim collar really makes a difference and allows Emma to relax her muscles in the pool and we are so glad we bought it. I don't have any photos of us at the pool, but hope someone might join us at some point and we can get a few photos for you.

Saturday night we decided to head to the local minor league Blue Rocks baseball game. Although we arrived about a half hour late, we had lots of time to enjoy the game. We found our seats at the start of the bottom of the third inning and the Blue Rocks scored 6 points in that inning. Each time the team scores Mr. Celery runs out and dances around and the girls were treated to a lot of Mr. Celery that night. Julia loves Mr. Celery! This is good because she has a complete aversion to Rocky Bluewinkle the mascot and we are hoping her love of Mr. Celery might eventually turn into a tolerance for large, dressed characters. One can hope!

Julia spied the cotton candy man and so we purchased one for the girls. Julia and Emma both love this stuff and I remember loving it when I was little. Emma can eat it easily and kept demanding more - she was a happy, cotton candy mess by the time it was finished! Next time I'll have to remember to pack an extra shirt just in case.

The girls apparently caught the eye of someone who worked at the Blue Rocks. She thought they were adorable and came over to meet them and gave them each a ball. She also took a family photo for us (that I put at the top of this blog post) and Emma even sat up for the photo! Then, they announced over the loudspeaker a special welcome to Julia and Emma. The girls loved that! The game included fireworks at the end and so we went to the parking lot to enjoy them to avoid all the traffic when it was over. We all had such a wonderful time!

Our next game will be the Philadelphia Phillies in two weeks and this will be the first time the girls will be to Citizens Bank Park and they are now really excited for the game.

Monday, June 21, 2010

Disability is Natural

Chris and I have been spending one weekend a month since February at the Partners in Policymaking meetings I discussed on this blog post. The experience and the knowledge gained at these meetings are life changing. Really. It's that powerful.

I will do some future posts on learnings from these monthly meetings that I want to share with everyone. Today, though, I want to focus a bit on what was discussed this month: Disability is Natural. Our guest speaker from Colorado, Kathie Snow, presented this subject from her experience as a parent with a son that has cerebral palsy and was educated in an inclusive environment. Please know that I couldn't possibly do her 3 hour presentation much justice at all in this brief blog post, so please check out her website found here that has loads of thought provoking articles and website resources to explore.

Mrs. Snow's presentation centered around the concept that there are two worlds: Disability World and Real World. The Real World is what typical children would do at any given age and she contrasts that to what children of the same age are doing and what is expected of them. She presents the concept that we need to give our disabled children the same opportunities as our typical children - to have time to make friends, be included in a typical classrooms, go to birthday parties (where therapists are not the only "friends" in attendance!), gain independence, held responsible for age-appropriate activities, etc. Basically, to be included in real world activities.

In contrast, Disability World is a place where people are judged by the medical diagnosis and everyone is working to "fix" it. The child gets the message that they are broken or something is wrong with them and often is hurts their self-esteem and results in learned helplessness. The thing is, people with disabilities don't need to be fixed. Disability is a natural part of the human experience and we should learn to embrace in general society people with disabilities.

People with disabilities don't need to be labelled and segregated out. Separate is NOT equal. But yet, children with disabilities are usually separated out into special education classes (and special sports teams such as Special Olympics, etc.) without even given the opportunity to be included in typical classrooms. They can only place out of special ed when it is deemed they are "normal enough." The caution from Kathie and many of the other speakers and those in the program that are disabled adults that went through the special ed system is that it is VERY EASY TO GET INTO the special ed system/classroom, but VERY, VERY DIFFICULT TO GET OUT of that classroom. It is much, much better to start out learning in a typical classroom with appropriate supports.

Consider that regardless of the large amount of time children spend in special ed (usually up to age 21) and the money spent by the government to support these programs, the unemployment rate of disabled children who go through the system is >75%! At the end of the special ed road, parents and educators are often working towards the goal of getting the child into a group home instead of their own apartment. In group homes people are put together with relative strangers they have to live with. They have goals written down that they need to meet - such as making your bed within 20 minutes of waking up, having food dishes washed and put away within 30 minutes of finishing meal, etc. Who the heck wants to live to this standard? I often go without making my bed at all and am just FINE with that!

I don't want to start down a path that considers it a success to have my child living with strangers not of her choosing, in a place with rules that I don't want to live with, and to a life of poverty living off social security disability insurance. And, so, what Kathie presented really got to me. I didn't get much sleep that night thinking of how this talk applied to our life and what is possible for Emma. Chris and I want Emma to live in the Real World and NOT in Disability World. So, now we have to figure out how to navigate the road of school starting in a few months and know that we have a strong voice in Emma's placement. And while we know that the path will be a continuous work in process, the one thing that is certain is that we will exercise our authority to deny many of the "assessments" that well-intentioned people want to give to our daughter that will result in more labels. This includes IQ tests. I can honestly say that I find NO value in IQ tests and will not agree to any such test for either of my children. Other than that, we still have a lot to figure out and I feel extremely lucky that we are participating in Partners in Policymaking while Emma is young.

Monday, June 14, 2010

Julia's Dance Recital 2010

June 13, 2010

This was your second year dancing with Victoria's Dance Stars and you were so excited for your recital. The dance was set to On The Good Ship Lollipop and it was a tap routine. You knew all the words and sang them with the song. You are a born natural on the stage and love to perform for everyone! MomMom and PopPop Sheedy and White came to see the performance with us.

You also practiced a ballet routine to Animal Crackers in My Soup and were a bit sad you did not perform it on stage. This was not the large recital year and so you only had one dance to perform. However, you gave us a private performance of Animal Crackers and we were thrilled!

Some Days

It's pretty much conventional wisdom that it is not good to compare kids because it's just not fair to the children. And I pretty much agree with this conventional wisdom so I try not to compare Julia and Emma to other children. They are amazing, unique little girls and I love them just the way they are so comparing them to other children isn't something I do regularly. But, I think it's human nature to compare things - it certainly is for a trained scientist (like me!) to compare and contrast pretty much everything - and so I find myself often comparing my life to other Mother's lives.

I'm friends with some incredible women that I met when Julia was about 4 weeks old. They hold a play group every Monday morning and we very rarely go these days because our schedule is usually crazy! Today we had some free time and Julia decided she wanted to go to play group. So, off we went. The older children are all Julia's age and then there are all the little brothers and sisters - some Emma's age, some younger than 1 year old. It's a great mix for the children to play and both Julia and Emma love going to group. But me.....not so much. Going to group actually makes me terribly depressed.

It's not so much that I compare Emma to the other children. Like the 7 month old who sits alone, plays with his feet and bangs on the music table. Or the 10 month olds who feed themselves their bottle, are eating table food and crawling. Or the 2 year olds who are running all around telling their Moms what they want to eat or drink and are potty training. Or the children right around Emma's age that are having in depth conversations with their parents and engaging in imaginative play with the other children. It's more that I do see all this around me and it makes me notice the stark contrast of my life from the other mothers' lives.

You see, I'm not complaining that my child is getting into everything. I'm not complaining that my child is growing up too fast. I don't have to chase after anyone or wonder that they are being too quiet and getting into something they shouldn't. I don't have to worry about having Emma eat another chicken nugget in order to get the brownie she is begging for. I don't have to put Emma in time out. I don't get into discussions about putting Emma in camp for the summer. I don't complain about words that she is using that she picked up from who knows where. Well, you get the point.

Each time I go to play group I realize just how different my life is than what I imagined a few years ago. When I'm at home with just our family or in a small group setting with loved ones I feel that our family is pretty much perfect. Our life is so rewarding. But, when I am at play group with a lot of moms and a gang of typically developing children I feel very alone. And not a bit sad when it's time to say goodbye and come home.

Wednesday, June 9, 2010

Wordless Wednesday

Sunday, June 6, 2010

Nothing much happens

Today we had a bit of a lazy day. It has been threatening thunderstorms for the last five days and we have barely seen a drop of rain, but today it looked like it wouldn't hold off much longer. The threat of rain and the fact that I was feeling a bit under the weather made us cast aside our plans to attend a local festival with the girls. Instead, we decided to have the girls help us wash the car since that would be both productive and a bit of fun.

What child doesn't love to wash a car? Apparently, Julia. She is not sold on the idea but Emma made up for Julia's lack of enthusiasm. I think Emma thought it was the best idea ever! I know I've mentioned before how much she loves to see people working - and watching people work while sitting in the driver's seat of the car (we put the ChildRite chair in the seat so she was supported) just sent her into fits of giggles. Giggles like that would keep us working all day except that it started to drizzle. Julia is very much afraid of storms and at the first mention of a drop of rain she ran inside for shelter while I kept right on vacuuming the car. Chris was convinced that the sky was going to open up and storm so he started putting all the supplies away and took a crying Emma inside. Emma did NOT want the fun to end outside and she had no problem letting us know.

Emma went down for a nap while Julia and I spent a bit of the afternoon lounging around and watching tv together, which is very rare treat in our house. Much to our amazement, the rain never really came. There was about 5 minutes of drizzle before it subsided and so we could have cleaned the car after all. Before dinner we decided to head out on a family walk and were just starting out when it started to drizzle again. Really! Julia cried she wanted to go home but we pressed on and after a couple of minutes the rain went away and we all enjoyed the walk.

Overall nothing much happened today but I decided to make a journal entry about it anyway. Sometimes it's just nice to capture the everyday, boring stuff to look back at sometime in the future.

Friday, June 4, 2010

You just have to ask

Today is Friday which means Field Trip Friday for us and since the Delaware Children's Museum was such a big hit last week we decided to go there again. We ran into a few friends there which was a great surprise and the girls just had so much fun playing with them. I found some more ways to have Emma interact with the exhibits and she kept squealing with delight. I just love when that happens :)

When we were leaving I spoke with the front desk staff. I handed in my feedback form and started to talk abut the water exhibit. Before I could say much, she told me she remembered me from last week and that she had spoken with the museum director and everyone TOTALLY AGREES that they want to make the water exhibit available to children in wheelchairs. They are already discussing possible options to make this happen.

How cool is that? I'm so excited that Emma will eventually be able to use this exhibit without total assistance from Mom or Dad. I know she loves having us around but she is exerting an independence streak whenever possible and anything she can do on her own without Mom and Dad participating in 100% is a fantastic activity in our book.

Thanks, Delaware Children's Museum for having such an inclusive mindset!

Thursday, June 3, 2010

For Sale

It's official - our house is for sale. The sign was just mounted in our yard.

I leave you with a quote from Chris: "Oh, boy. I hope that doesn't become a fixture. By that I mean that I hope I don't have to decorate the signpost with Christmas decorations."

That makes two of us. Wish us luck!

Tuesday, June 1, 2010

Memorial Day

Memorial Day is celebrated early in our town since the local university graduates every Memorial Day weekend causing the town to pretty much double in size that weekend. This year the annual Memorial Day parade down Main Street was held on May 16th and we arrived about an hour early to scope out a great (shaded) spot for the festivities. We had packed a picnic lunch and met some nice people sitting around us and so the time before the parade started passed pretty quickly.

I felt overwhelmed with gratitude to all the people in the parade that endured great personal sacrifice to ensure our safety. There were so many people - young, old, men, women, children in school programs, Vietnam vets, Korean Vets, POW and MIA groups - in the parade and each and every one of them received lots of applause from the crowd. Julia was happy to be at the parade until she saw the UD mascot coming down the street and she immediate fled to Daddy's arms and they moved as far away from the street as possible without leaving the area and she spent the remainder of the parade stuck to Daddy. Chris really enjoyed this display of affection from Julia since it is usually reserved for Mommy. However, she turns quickly into a Daddy's girl when people dressed as characters or thunder/lightening are around.

Emma loved the parade but not like we had imagined. We thought she would be glued to all the action in front of her with the parade going by, but that was not the case. She seemed to be very interested in everything going on behind her and kept straining her neck to see all the non-action going on there. This made me laugh but we were so happy that both girls were able to enjoy their first Memorial Day parade and learn a bit more about our nation's history.