That Went Well

No surprise that so far, today is going better than yesterday. Yesterday there was no school, which immediately makes a day hard. Then we drove 45 minutes to see a doctor and Miss Amazing remembered the wrong time and doesn't seem to be able to read so we showed up at 10:30 for a 10am appointment, which I then rescheduled for the end of November. We then rushed back home to get to OT instead of doing any number of more fun things, to find out that the OT left a message at home, she was out sick, sigh. Not today, today is so much better so far! Today was Claire's first day in her new class. I think it is pretty safe to say that I was more nervous than she was. I know so much more about rejection and how mean people can be than she does. I remember being laughed at in 1st grade. The thought of her having to endure such pain, on top of already having to deal with a lot just makes my heart sink with weight. But this morning we had our act together. We were in the car and rolling even a few minutes early after enjoying an easy going breakfast as a family. Just to clarify, breakfast as a family consists of the girls eating oatmeal that Jared and I feed them, Jared also drinks coffee. It just didn't involve vomiting or screaming or a tantrum of any sort, which was nice. Even the walk down to the car was nice this morning. It was 40 degrees which is my idea of a perfect morning temp. Cold enough for the air to have that crisp clean feel, but not so cold that you can't breathe it in. The fog was in pockets throughout the redwoods and burned off as we got closer to town. We pulled in and there was a blue spot open for us (I was a little worried about that) which was nice. Another blue placard holder, sneered at me as I got out, clearly, it was her spot. We were early, really early. But Claire really wanted to go, so we loaded up and went to sit outside the class. She obviously hasn't learned the trick of sneaking in just as the bell rings so as to draw very little attention to oneself. She rolls up and immediately three little girls come to say hi. Not in a hi sweet little baby sort of a way, more like a hi Claire what's up sort of a way, it was great! She's the popular kid. Seriously, how did I end up with the popular little girl that wants to be covered in pink glitter, loves art, horses and dogs, how can this be?!?!?!?! But I did, and she is great. I have to say how laid back the parents in that crowd are. They look way more rested than the parents at the autism school drop off. It was really nice to be part of that parent crowd. There was a very easy going feeling about it. I am really excited for Claire to get more time with the typical, more laid back kids too. I imagine that as she hears them speak and act, that she will have the affirmation of being around people who are just like her.

The Beautiful People

Today was supposed to be the first day that Claire got to go to her inclusion class for an hour to start the day. Unfortunately, her aide that was trained for it couldn't be there today so we postponed the start until Tuesday next week. Side note, this works out well because Captain Awesome and Miss Amazing completely forgot to set an alarm and woke up an hour late today. When we decided to postpone yesterday, we completely forgot to tell the new teacher, Mrs. J, oops! So this morning I get an email from her, asking where Claire was, understandable. She also added that she wanted to be notified so that she can not make extra copies for Claire on days she will miss, today it was one piece of paper. I have to admit I was a little irritated by this. I have a sort of full plate, sometimes I miss things, I am after all human. So I responded and explained what had happened and offered to stop by after school to pick up the missed activity. Claire was very excited to show me her new classroom, she is over the top excited about kindergarten! The teacher gave me the activity and explained it. I verified that really, really, Claire is planning to come to class on Tuesday. It was then that the teacher politely reminded me that Claire should arrive at 5 minutes before 8 and that she is very strict about students coming late as it is very disruptive. I have to admit, at first I was a little mad. I have to drive 15 minutes to get to school and traffic is randomly very heavy, adding an extra 10 minutes. Claire has to have her meds in the am, stretch, walk, eat and get dressed before leaving for school. It is a miracle we make it on time as often as we do, on average about once a week. I really felt like this teacher had no appreciation for all the stuff that I have to do for this little girl, just to keep her alive and sorta well. Then it dawned on me, Mrs. J is no different than I was 4 years ago, back when I had a healthy 1 year old little girl and no idea about people with disabilities. My next thought was one of those huge, mind bending thoughts, that really made my brain stretch. She is treating Claire like all of the other kids, isn't that what I want? With that, both my brain and my heart exploded. This is real inclusion. The teacher is putting the same expectations on Claire and her mom as she is the other students, what an honor. I guess I figured that I would always have to fight for Claire, that people suck and don't get it and that life would be an uphill battle. I am so deeply humbled as I stand corrected. As I have been soaking in this idea of respecting other people enough to assume that they are not being disrespectful or malicious, I was hit again. Mrs. J replied to an email that I had sent. I had written a letter to go to the new classmates and sent it for approval. Her response was that it brought her to tears and that she would send it home with the students. She also invited Claire along on a field trip that is being planned for December. The class is going to the children's discovery museum. There is a visiting exhibit called accessAbility. She wrote "The concept is that kids can get an experience of what it is like to live with a physical difference and explore the similarities and differences in the ways we each participate in the world in." All I can think to say is wow, I am truly blessed. Claire is surrounded by a lot of really beautiful people. Looks like with my whine and cheese, I'll be having a big helping of humble pie too!

Kindergarten!

September 1st was not only the first day back to school for us, it was the first day of Kindergarten! How ever did that happen? It was also that first day that Claire rode the bus home. I am so proud of my brave little girl, she loves riding the bus and is really enjoying her independence. I am really enjoying two less trips all of the way down to school. Claire has therapy the three other days, so for now, it is just twice a week home. Once we get the classroom situation settled in, I think she just might even ride the bus to school, so exciting! The classroom situation, there always has to be struggle to make a story good, right? At the start of the year, Claire was slated to be in the same preschool/kindergarten class that she was in last year. The problem with that is there were a bunch of rookies that got moved up into the class and it was chaos in there. Claire really does pretty well in chaos, but this was a little much. So I asked to see the k-3 class. I was able to see it that Friday and the same day get confirmation that she could switch! I seriously don't think we have ever had anything happen that easy. Wait a minute, maybe that was too easy, it got more complicated. We were told that today would be her first day in the new class, but it didn't quite happen like that. You forget just how unique your kid is when there needs to be a complete state of the union before moving to the classroom on the other side of the parking lot. I am actually really happy that both the old and new team are taking the time to be sure that no details get missed, Claire is really surrounded by a lot of amazing people. So hopefully next week she will be in the K-3 class as her new home, then we will start integrating her into her mainstream class. Eventually we will get all settled in and it will be Christmas break, oh well!

On My Drive to Work Today

It might sound odd as I am a stay at home mom, but I do feel like I commute every day. Claire goes to school five days a week at two different locations, each at least a ten minute drive from our home. Getting Claire a public education is indeed a full time job in itself. Enough explaining, on with my story. As we started our journey to school today I was thinking about all of the usual stuff. When should I call the County Office of Ed to discuss the next IEP, I have to call the district and find out what on earth they are thinking, when are we going to see the specialist about scoliosis the appointment is in Dec so it must be soon, the typical monotonous part of my job. As we got onto the highway the light was coming through the very thin layer of clouds, it was breath taking. Normally we go to school in a dark grey fog, this was more like low laying clouds. I told Claire that I felt like we were driving in clouds and we could pretend to be angels, I got a big positive yes to that! As we dropped getting closer to sea level the clouds cleared and the sky was so amazing, crisp and clear. I tried so hard to soak in the beauty of the morning. The trees were such a deep bright green since it rained a few days ago, the leaves were bright red and the blanket of light fog was slowly starting to reveal the dark blue water beneath it. I seriously have such a beautiful commute. It did help that both girls were sitting quietly smiling. Then we got to school. As I helped Claire to walk toward the classroom I discovered that she had puked inside her shirt, but I had a clean set in her backpack, so we are still up for the day. Now I need to get a referral to GI, another thing that I have been meaning to do.

Little Miss Two Face

Today we got a call from Katie, Claire's teacher. She was very concerned because Claire didn't feel well and was tired. She hadn't been eating and was screaming and biting herself for about 20 minutes. I know that Claire has been on antibiotics for a week and those can make you feel not well. But I didn't think that Claire was that badly off. She stuck out the last hour and was tolerating life at school when I went to pick her up. We came home and had lunch and she turned into the giggle monster. I am at a loss for what to do. I've been told by some that she could very well be mentally retarded, it is just to hard to tell. Here she is completely manipulating her school and her parents, just because she can. I don't think I have ever seen her so happy and talkative after school as she has been today, the irony. Good thing we have a flip camera, here is a clip of Claire at lunch, just as she was getting warmed up with the laughing and silliness.

Fun Day

Today was "Fun Day" for one of Claire's preschool classes. When I first heard of this I had to smirk. My dear friend Melinda has "Fun Friday" with her kids every week, Claire's autism school does it once a year. So this morning we woke up, excited for the big event. Well, Claire and I were excited, Jared a bit more on the terrified end of the spectrum. We actually got out of the door with both girls and to the bus stop on time, something I never would have thought we were capable of, I reveled in the achievement. For our first act of fun we jammed to Jimmy Eat World in the car. We can't figure out why, other than exposure, but Claire loves to rock out to their older stuff. As the day went on, Claire got to have her first ride on a school bus, she chose to have a yellow and pink flower painted on her cheek and then she got to ride a pony with her dad. Unfortunately, during all this fun we figured out that Claire has horrible allergies. Her coughing got really bad and we had to leave early. Before we left we got to see some other parents and some of the staff from the school. One of the nice things of an event like this is seeing that you aren't alone. We can joke with the other parents and they get it because they have similar issues. As we were loading up the car Liam's parents, asked about bringing over some dinner. When I declined they then offered dessert and beer. I responded that real friends bring booze when you have a baby, their reply, real friends bring you beer and have one with you. I loved it! It was a total aha moment for me. We are surrounded by the greatest friends. We have had the blessing of friends to laugh with not just since Chloe was born, but for a while. Some are near and some far, but I am truly overwhelmed by the blessing of friendship from so many. Thank you to all of you.

The Queen Bee

Wednesday night Jared and I got to go to parents night at Claire's school. This was our first time at this sort of event and it felt a little strange. We are trying to convince ourselves that we still are not grown ups, but parents night sure made us question that. Since Claire goes to a school for autism the event was set up with lots of resources to help families who are living with a child with autism. Clarie started into the system at a pretty young age, so we were already familiar with many of the things that are out there to help. Jared and I had a good little chuckle when the guy from the Play Project presented. It is a really great program that is intended to use floor time to help the kids connect and socialize. One thing Claire definitely does not need help with is socializing, so we didn't bother that rep. We checked in with teacher Katie who agreed with us that socialization is not Claire's current weak area. She then informed us that earlier in the day, she had one boy on each side of her holding her hand. The exact word that the teacher used to describe little miss Claire was "The Queen Bee". Apparently, Claire enjoys being the center of attention in the group, as she is the only girl, it looks like she gets that role a lot at school. Lord help us, she needs a little competition, and it is coming, soon. Here is a picture from Eater, you can see that she gets plenty of love and attention from her daddy. If you would like to see more of the pictures from Easter, here is a link to my flick page.

So excited!

I haven't been blogging much lately because I have been using all of my energy to communicate with several schools and all of Claire's various people. Today we had a very exciting day. She got to go back for her second day of school to Mount Hermon's Playschool. Playschool is a really neat preschool that has many fun things that Claire really enjoyed, mainly lots of kids. She had great fun playing with clay, watching the fish and hanging around the train table. When I went to pick her up she was beaming, she was so happy. We then got to take a break at home for a little down time and food before heading off to physical therapy. Sue our amazing PT could notice a huge difference in Claire's demeanor. Since she has spent most of the morning having fun and playing, her body was very loose. She was able to take several steps while holding onto a swing, a very unstable object. As we left Claire was so proud of herself for doing such a good job. I can't believe how hard she worked, but she was so excited to be able to put the pieces together and do it. She was really aware of where her body was and what she was doing. She knew that she was doing things that don't normally come. We came home, both of us exhausted from the rigours workout. I was surprised that she didn't crash in the car. When we got up to our place I laid her down, took off her shoes and read a story. Certainly, she was close to sleep. Imagine my surprise when I went in her room 45 minutes later to find her in her bed laughing and playing. We had a little talk about how exciting it was that she had such a great day and important it is that she sleep so that we can play later on when Daddy comes home. Amazing, after that she went right out. Here is a video of what I saw when I went in, before our chat. Thought I would get it on tape, in case I need to remember of great she is some other time when she is overtired and unruly.

It's working!

Not yet a full week in yet and already I can't believe the change in Claire. Today, when we got home I set Claire on her stool in the middle of the living room. I sat in front of her and we talked about the day at school. After explaining my desperate need for hugs, I helped her to standing (with very little assistance) and wrapped her arms around me. Then she let go! She let go and stood there grinning at me for at least 10 seconds. This is an all time best, life to date for her. She then bent her kneed and sat back on her stool with complete control. Every other time she has stood independantly, it has ended falling or leaning in some direction, this was so purposeful. I am so proud of her. When her dad came home the little exhibitionist continued to show off her new talent. It is awe inspiring to see her come out even more. At school she has settled into her routine and is now eating more like herself. Most of the notes and comments that I get from the teacher talk about how much smiling she does. I can tell how she enjoys being pushed and working at the goals that I can only imagine she has set for herself.

Learning a Lot

August 22nd I walked over to the school district office and signed the releases to start the process to review Clarie for preschool. I can't believe all of the ups and downs we have had on this journey since then. The psychologist calling to say it shouldn't take more than 10 minutes to meet with Clarie as there was so little to work with. The augmentative communication specialist coming and being blown away by how advanced Claire was and how well she understood the concepts. The IEP meeting where I got to argue with the OT to have the word "degenerative"removed from the report. Over three months of process and we ended up, the day before Thanksgiving, wondering when it would end. Then I got a call. Claire would start school on Monday.
Dec. 1 8am we headed out the door with enough time to go and stop at Starbucks and get a kiss from Andrew, Claire's favorite barista. When we arrived at school Brad came out to help us to the classroom. With a stroller and a walker, it is a project to get everything in. Claire was so excited to see Brad, it just so happens that he is also Grace's (Claire best buddy) dad. He did such an amazing job of talking with her and explaining the system. I think that she has a much better understanding of the process than I do at this point. Since they assume that I am a neurological typical, I get less explanation. We hit a rough spot when she fell sideways while standing in her walker and then screamed for about 35 hours, I mean minutes (it felt longer). It is hard to describe how isolating the first day felt. Here I am in a little cubicle with Claire screaming and biting herself with people staring and so much going through my head. This was touted as the Cadalic program, a place so many people wish their kids could get into. But it is so clearly not designed for Claire. I could hear the voice of the school district rep in my head, "Their just isn't a good place for her." As she is screaming I am thinking, if this is the best, how are we going to make it work. Yes, we were in the Cadalac program, but Claire needs something more suited to driving in the mountains in a blizzard. She stopped screaming, we played a little and the teacher told me it was time to go. Since then it has gotten better. Maybe it was good that they were able to experience the entire rath of Clarie in the beggining as a warning, as to say, be careful, you don't want to go there. There are still a few bugs to work out, but we are all learning, and Claire is too. The picture is of Claire, excited and just about to leave for her first day of school.