The Bracelet

This is Katie's bracelet. She made it today at her Occupational Therapy Session at the hospital. A year ago I never dreamed that she would have the fine motor skills, concentration or desire to do something like this. It's simple - a pipe cleaner and some craft beads. She threaded each bead onto the pipe cleaner -- by herself. The O.T. handed her one bead at a time - and alternating hands (she hasn't decided if she is right or left handed yet) she threaded the beads carefully onto the pipe cleaner. When she was done (before we clasped the pipe cleaner for her) she held out her hand into a 'modeling' position as if to say, "Hello, I'd like to wear my bracelet." It was priceless. Wow - she is doing so well. Even if she had to have a time out in kindergarten today because she was trying to dive head first into a tray of chocolate birthday cupcakes :) We are so happy with her progress. She has added a lot of new words into her repetoire -- including 'Ruth' (her speech therapist), 'ooohwa' = water. Yes, me, bacon, (I know, what kid learns to say bacon as one of her first words - but the kid loves bacon.) She has had a great couple of months and we are so pleased.
I'll try to get a picture of her with the bracelet on -- the problem is that she moves around so much it's hard to get a good shot. :)

Walk About Talk About Autism 2008

Today was the 5th annual Walk About Talk About Autism Walk for the greater Kalamazoo/Battle Creek Chapter of the Autism Society of America. This was the first year that we have participated - and after the great day that we had, I am hoping that this will become a tradition for our family.

Bill had to work (Saturday's in April are unfortunately not a good time for him to participate in a daytime outing) - so my mom came along with us --which was awesome. Mary got her face painted and there was lots of free popcorn-- so that got us off to a great start. We then walked (along with about 300 other people if not more) about 2 miles on a great walking area in a local park. The only bummer was that after 10 days in a row of 70 degree weather it was a little brisk today - especially in the a.m. Katie looked like the sta-puff marshmallow woman with a shirt, sweatshirt, coat and then the autism walk t-shirt over the top.

After about an hour of walking we came back and had lunch. Then they had a ton of door prize drawings which the girls were really into -okay, I guess I should rephrase that - Mary was really into it. Katie was into the popcorn and juice boxes. :) We won two great prizes which included a pair of passes to a local "bouncing" facility that is full of inflatable toys for the kids to play on. They both love it there. :)

It was a great day. It was nice to spend time with my mom - with the girls - and with so many families who share the pain and the joy of loving a child with autism.

Busy, Busy

It seems as though this week is flying by. There has been something to do every day, with no end in sight. It is Earth Week, so that has brought a lot of extra activity to the girls' school. Their school is really "into" Earth Week and they have a lot of special activities for the kids to help them gain an added appreciation for the Earth we live in. It's actually a very cool thing for the kids.

We also had a meeting at school today regarding Katie's class. The kids will be having a new teacher next year. The sad part about that for me is that Katie has really been making good progress despite some personality conflicts between the teacher and myself earlier this year. The feelings were that she was not the right fit for the classroom. She is going to return to the school that she previously taught at and they will be looking for someone with more AI Preschool experience and collaborative teaching style to take the classroom next year.

Church Without Guilt...A Novel Concept

For those of you without children with special needs, this post may not make a lot of sense, or maybe it will. I'm trying to show more honesty in my blog posts...mostly because I am bloggging mostly for myself. What good does it do to lie? None. It just postpones the inevitable.

Church is something that many Christians lie about. They lie to themselves, they lie to others. I grew up in church -- 3 times a week at minimum. And you know what, it was great. I loved it. That was the life I knew - and it worked. When I went away to college my church involvement wained. I had PCM (Practical Christian Ministry) and that was good - but it wasn't church -- not the way I knew church.

After college I did the 'church thing' again -- but only Sunday mornings...and more for the social aspect than anything. (Do you see the brutle honesty here.) Bill and I attended church after we were married -- I actually met him through a singles Bible study at the church we ended up getting married at. -- but it was the church all of our friends went to. We weren't involved, we just went to church.

After the girls were born we really tried to find a church HOME. A place where I could feel like I did when I was a child - it was my family. My friends were there. Churches have changed a lot since I was a kid though. And then you add a special needs child to the mix. One who can't just go to a regular Sunday School class. (they don't even call it that now.) Thankfully - about 4 years ago we found our church and it is a great fit for us. But, it has taken us a long time to get to that point. We haven't been attending very regularly over the past year - mostly due to Katie. It was impossible for her to handle church which meant that Bill and I had to take turns taking Mary to church while leaving Katie and the other spouse at home. That gets old really fast. The easier alternative was sending Mary to my parents church where my dad is the pastor and where she loves being in "grammoo's" Sunday School class (they still call it that at their church.) :)

Today marked a turning point for our family. About a month ago I took Mary to see a movie, and low and behold, who is behing us in line, but the Pastor of our church and his wife and kids. Coincidence, I think not...but God. We chatted a little, and in my embarrassment told him the truth -- that Katie's disability was keeping us out of church. He said -- funny you should mention that because we are starting a new program for special needs children . We are going to pair them with a "buddy" who will be with them every week. They will be like a classroom "aide" assigned just to the one child. ( Our church has recently gone through a major expansion ). "My old office" he said, "will be the home base for these kids." He asked me to drop an e-mail to the children's pastor and ask her what our options for Katie were. Kristin (the childrens pastor) said "Funny you should e-mail me b/c I have been thinking about Katie and your family a lot. We already have a woman that is interested in being Katie's buddy." I was floored. God is so cool. He had this all arranged. I didn't even have to stress about. A month later (today) we were in church as a family for the first time in a long time. Katie was with her new buddy Adore, who we "adore". She is a kind, wonderful woman who is willing to give an hour and a half a week to a child she had never met so that her parents can be in church together and so that Katie (and Mary) can hear about Jesus in their "Sunday School Class " -- that is what I am calling it.

God is so good. It is so nice to be in church singing "Shout to the Lord" and to know that I don't have to feel guilty that my spouse is at home, or that my autistic daughter is unhappy or miserable. What a great feeling. What a great day. I was able to be in church without any guilt...and the best part is that God actually spoke to me.....

Soccer Time...

Well, soccer started again today. 7 weeks in the Fall and then 7 more in the Spring. This is Mary's 3rd year playing soccer - and we had some issues in the Fall. She wasn't sure she wanted to play - she didn't like to run -- hello? this is soccer. You have to run. Anyway...I think we have moved past that and are looking forward to a great soccer season. The other bonus compared to the Fall is that Katie is so much calmer on her new meds that she was able to sit for the majority of the game and eat popcorn and just hang out. She has never been able to do that before. The risperdal is working. And we think we have the dosing at just about the perfect levels. It has taken some work, but it is so great to have people come up to us and say "Wow, Katie is doing great. What are you guys doing differently?" First I want to say - God is doing it! He directed us to a great neurologist who isn't afraid to use medications to help this kids. So PTL for that. Also, God is really working in Katie's body -aside from the meds. She is learning to sign. This has been such a huge blessing for her, as well as for all of her caretakers. Honestly, a year ago, I never would have imagined that she would be signing. Now, her speech therapist at the hospital just told me this past week that she believes Katie will be able to read - at least at a functional level if not higher. I have never let my mind go to that point in my hopes for Katie, so for me that is a huge thing to work towards. We are so excited.

Old Friends are the Best Friends...

Yesterday was a great day for me. I was able to meet with one of my dearest friends from my childhood who I had not seen in 20 years. We were supposed to have lunch, but we got talking and the time just slipped by. I'm hoping that we can hook up again in a few weeks. We live about an hour and a half apart ..not too bad really. We met in the middle and it was great. I had to chuckle because as we were leaving she said, "Were you at all worried that we wouldn't have anything to talk about?" (At this point I should have said, "How well do you know me" because all my friends know I'm a 'talker') - but I just said, "No. I wasn't worried." It was great! And the amazing thing is how much we have in common. Children with disabilities. We each have a child on the autism spectrum. It was absolute bliss to chat with her. Thanks, Kim, for now being my "oldest"('cause you know we're not old!) and "dearest" friend.

More Chicago...

So I didn't get to this yesterday, but here is the Readers' Digest version of our Chicago trip. We knew it was going to be a rainy day, but that didn't stop us. We headed straight for American Girl Place. My hubby doesn't really like Chicago, so when the parking ramp we planned to park in was full, I heard "I hate Chicago" mumbled from the drivers seat. I looked over at him and said "you've got to be kidding. Do you know how many parking garages are in downtown Chicago?" I got him safely into the Northwestern Hospital ramp (which by the way cost us $30 for the few hours we were there -- I don't miss that about Chicago at all.) and we headed in the pouring rain and almost hurricane like winds to American Girl Place. That part was amazing. We spent quite a bit of time walking through all 3 levels of the store. They have some really cool displays for each of the time periods that the dolls represent. It also took Mary awhile to decide which doll she wanted (her belated birthday present from December). She decided on Mia and we headed out for Giordano's (which for those of you not familiar with Chicago is right around the corner. :) ) We pigged out basically - it's a once a year thing, so I'm not ashamed to say it. It was Mary's first time at Giordano's -- so it was a special treat.

We headed back out in the rain. We were going to Water Tower place for a little bit, but Mary saw the Disney store and decided that she didn't want to get soaked, so she picked the Disney store. That was fine with us. We made a few purchases and headed to the car.

We stopped at Dairy Queen on the way home. YUM! It was a great day. I had missed Katie, but as I said in my earlier post, she had a great day with my mom - and her meds seem to really being doing great things for her...so it was a great day all around.

My kind of town, Chicago is....

I want to do a post on our great, no awesome! trip to Chicago today - including American Girl Place and Giordano's - but I am whipped! So tomorrow I will be back with all the goods -- but here are some pics to get started. And yes, we left Katie at home with my Mom - and my Mom said that this is quite possibly the best and easiest day she has ever had watching Katie -- THE MEDS ARE WORKING - and the Lord is working in her too - it's so exciting to see.

Meds Update

Just wanted to throw out a quick update on Katie's meds. Mostly so that in a month I can look back and see where we were at. She is taking .25mg in the morning and the same dose again at night. This is only half of the dose that the neurologist originally prescribed for her - but right now it seems to be working. She is calm but not spaced out. She is able to sit in one place for more than 5 minutes - which in and of itself is amazing. I would like to see a little more focus - but I'm not sure that up'ing the dose is the answer at this point. Bill and I are happy with the improvement that we have seen - and she is starting to talk ! PTL! I'm looking forward to sending her back to school next week without telling them that we have added the daytime dosage and see if they notice any improvement!

Babies...

Don't worry...I'm not pregnant. :)

I was going to wait on this post until later in the month - closer to the 26th. But after spending so much time yesterday reading the story of Audrey Caroline , I had no choice but to write this post today.

Those of you who know us know that we had a baby before the girls. His name was Billy. He was born April 26th, 1999. He passed a blood clot through his heart before he was delivered. He was stillborn. The year that followed his death and birth was by far the most difficult year of my life. (which says a lot if you know all the things that followed such as my arnold chiari malformation and subsequent brain surgery, my mom's brain aneurysm, and of course, Katie's autism diagnosis). I read a post today on Alice's blog that made me think a lot about how God uses suffering and trials in our lives. In retrospect, I know that Billy's death was used greatly by God in my life, in Bill's life and in the lives of our family and friends. Obviously, it would not have been my choice for my child to taken from me before he was able to live on this earth - but that was God's choice and God's purpose. As the years go by, God has allowed me to meet and know many other families who have suffered the loss of a child. I wonder sometimes if God was preparing me to minister to others. I also know that through our loss of Billy, the subsequent births of our two daughters, Mary and Katie - even with her autism diagnosis - have been that much sweeter. We always tell Mary that God gave her to us to heal our broken hearts - and sometimes when I'm having a bad day she'll remind me that she is God's gift to me. How true that is.
Hug your "babies" today and tell them how thankful you are that God has given them to you as your special gifts.

Broken Glass, More Meds and a Movie

I gave my post this specific title so I wouldn't forget what I wanted to blog about today. Lots has happened. Spring Break is busy.
My morning started off with a "crash" so to speak. I asked Mary to keep a perverbial eye on Katie so I could grab a shower. I hadn't quite made it to the shower yet as I made a quick stop to my facebook page - and I heard a crash that compares to what I imagine it would sound like if you hit a baseball through a pane glass window. Katie has a special connection to a large glass pitcher that I own (well, I did own it...) It is a very heavy gold colored glass - from the 70's. A great pitcher for ice tea, etc. It's beveled glass and as I said, very heavy. Well apparently, the OCD in Katie took over and she wanted to hear the sound of breaking glass.(Unfortunately this happens a lot). She threw the pitcher from the top of the steps to where it landed on the hard tile floor in our entryway and proceeded to smash into oblivion. Mary yells up (as if I didn't hear the crash) "I know I'm supposed to be watching her, but you need to get down here NOW!) Good thing I hadn't made it into the shower yet. After a time out (for Katie - but I could have used one too) and 20 minutes of cleaning up glass, I was finally able to get my shower.
We started daytime meds on Katie today too - which you wouldn't guess from the breaking glass episode - but it really did make her calmer the rest of the day. My concern as always is that she is too calm - so we are watching her carefully over Spring Break to make sure that we aren't seeing the "zombie" effect.
Then tonight I was able to take Mary to see "Nim's Island". Great movie for moms and girls ages 7 and up. Mary was slightly freaked out by the sharks (you could only see their fins - but that was enough to have her practically lying in my lap.) It's PG - no swearing, sex or any other noticable issues. It probably could have received what I call a G7 rating which is a G movie if your child is over 7 ( I use 7 b/c that is Mary's age - I know - I'm nuts.)
Well - enough for now...more on the meds later.

Mom Thoughts...

Not being a full-time stay at home mom, this is an interesting week for me. My girls are on Spring Break, Bill is very busy at work, and I have taken 10 days off to enjoy being home with the girls. I can't remember the last time I had 10 days off in a row. It's kind of a weird concept for me.

I don't work that much - only 15 - 25 hours a week, sometimes more and sometimes less. But to not be working at all is kind of fun. The weather has finally turned nice here in snowy Michigan - and the girls are enjoying it. So are mommy and daddy.

Katie has tons of energy lately. We finally have her meds balanced (at least for the night time dose). We are considering adding the daytime dose again over Spring Break so we can monitor her progress at home without the somewhat negative comments that tend to come home from school. For some reason, school has been extremely negative about using any kind of meds with autistic children -- and that is one thing I just can't figure out. (yes, we have a mini-tramp in our front room. Katie uses it for self-regulation. It is a much needed part of many autistic children's lives).

To keep things fair (because that is how 7 year olds like it), Mary also wanted her picture taken. She does not have Katie's energy these days- but she has started Spring soccer and is actually excited about it - so we'll see how that goes.

Well, for now I think that is the end of my mom thoughts...too many and my brain starts to hurt.

Spring Break Has Begun

I must say that being my first year as a mother with both children in school all day -- Spring Break can be a daunting thing. Both of the girls home for 9 days...and I took the week off of work to boot -- this is going to be exciting. :) Bill has to work as this is the busy time of year at the Marina - that being said - and with gas at a neck-breaking 3.39 a gallon - we aren't going too far this Spring Break. We are doing a day trip with just Mary to (http://www.americangirl.com/ ) the American Girl Doll Store in Chicago...it is long overdue and has been postponed 3 separate times since December due to illness and weather. But other than that we don't really have much going on.

The weather here is actually supposed to start getting nice..so maybe we could get going on Mary's garden -- I wish we could break out the swimming pool, but my husband tells me that I am jumping the gun a little bit on that one. It's only going to be 60 degrees :)

This picture is Mary in one of her new dresses that "Grammoo" made for her to wear this summer. Notice the matching bandana -- it's a Girl Scout thing, that is all I can say about that. I told her we weren't quite at sundress weather yet -- but 7 year olds and Spring Break --

Katie has Spring Fever, too -- but she doesn't look very excited in this pic. Hopefully the nice weather and a little time outside will help.

World Autism Awareness Day 2008

I just wanted to take a minute and let everyone know that today is world autism awareness day. You can visit http://www.worldautismawarenessday.org/ to find out more information. Obviously, autism hits home for me each and every day, so I am excited to have this day where it can be brought to the forefront for the world to look at.

Just remember...this is the face of autism.