Well, Summer is finally kicking into full gear here. I think Miss Katie is confused as to why she is just home and not going to school at all.  She is used to the two weeks on two weeks off format that she has had the last 4 or 5 years.  She really has no understanding of time as far as being able to explain it to her, but her body clock is excellent.  She wants to go to bed and get up at the same time each day - I wish I felt that way :)

Her big obsession this Summer appears to be swimming. She wants to get into the pool as soon as she wakes up in the morning and usually ends her day in the pool as well.  Needless to say my house is full of wet swimsuits and towels and it seems that when the weather doesn't cooperate with her swimming needs she becomes a little agitated. Those are also difficult conversations to have with her.  She does not understand why it is not okay to swim when it is thundering and lightning out.

Well, not much else to report today. Enjoy your life wherever you are at.

I have decided that I need to make a commitment to start blogging again. Katie's journey has become more difficult over the past few years and I feel that this blog is the best way for me to again begin tracking Katie's progress.

Katie is now eleven and will be twelve in the Fall. I cannot believe how quickly time flies - even though at times it seems to drag on forever....especially when Katie is struggling. Although Katie has become much better at using PECS (picture exchange) to express her wants and needs, she also has become more impatient when we are not able to figure out what she wants and get it to her quickly.  As a parent I feel that autism is a continual exercise in patience and determination. I cannot give up.  I have to daily make a choice to fight for what Katie needs. To be patient with her and strive to help her every day.

So as Summer starts to go into full swing - and Katie will be home all Summer this year for the first time in four years -- I commit to blogging again - even if only for myself.

Two Years....Really?

I cannot believe that it has been two years since I have posted on this blog.  I used to love blogging, using it as a means to keep track of the progress of things in our life, especially Katie's autism. I decided that after a long hiatus, it was time to get back into the swing of things. I have always enjoyed writing down my thoughts. So even if this is just for me...here I go.

Katie is now 10 and will be 11 in October. She is finishing her 4th year at her current school and will actually being transferring with all of her classmates to a new school program next year where she will have more contact with general education students. Research has found that when autistic students are able to spend more time with their neuro typical peers, the results are very successful. 

I just finished a long term substitute teaching assignment at the local middle school.  As much as I loved working with the kids, I was reminded in many ways why I have chosen not to teach full time. I am looking forward to a little more time at home...getting caught up on reading, and maybe even finding the time to get back to cooking meals every day...yes, we ate way too much pizza while I was working!!!

Well, enough for today. I will try to make this a habit again.....

12 years ago

As April 26th rolls around each year, I never quite know what I'm supposed to do, how I am supposed to reflect on probably the most difficult day I have ever lived on this earth. 12 years ago I gave birth to our first born child, a son, Billy. But God's plan for Billy was different than mine. Billy was born still. He never experienced the tragedies and disappointments of this life, but rather went straight to the arms of Jesus.
12 years ago I felt as though my life would never be the same - and I was right.It wouldn't. What happened that day has changed my life forever. Although it took much time for me to see what those changes would be, God used that tragic day to help define who I am today. I was taught the fragileness and value of life. I was taught not to take anything or anyone for granted. I learned, over time, that God can get me through any situation, no matter how difficult. I learned that God loves me and that He needed to teach me some things before I could be the mother that he wanted me to be. He was teaching me to love and appreciate the future children I would have, in a way deeper and more complete than I ever could have if I had not experienced the loss of my son.
He was preparing me to love a special child, one with a disability. Not that I couldn't have loved Katie without losing a child before her, but because of my loss, my love for her has come without question. As I often say, I am thankful that God gave her to me so that I could love her and try to be the best mother I can be to her.
He was also preparing me for Miss Mary, the child that I believe God allowed to heal my broken heart. She continues to be a reminder to me of God's love and faithfulness to us, even 10 years later.
I write this mainly for myself, to look at and reflect on. Maybe that is the best thing I can do, look back and be thankful for all that God has given me. I can hardly believe that my precious baby would have been 12 tomorrow. I am thankful that he is in heaven and is enjoying God's presence where I know that one day I will join him for eternity. Happy birthday, Billy.

A Sunny Afternoon

Well, living in Michigan, March can be an unpredictable month for weather. Thankfully, the sun is shining today...but it's just a little cold for my liking. I can't complain though. It's a pretty quiet afternoon here. We have been struggling with sickness (strep, bronchitis, ear infections, etc.) all month. Most everyone is feeling better, except Miss Katie whose cough is keeping the house at a moderate noise level even though she and I are the only ones home.

Katie is doing really well. We were finally able to slowly take her off all of her medications, and she is definitely a new girl. Believe me when I say that removing the meds hasn't changed her autism....but it has definitely given us back the "real" Katie. She is "talking" more (I use the term talking loosely...she is babbling a lot...like a one year old would.), she has a range of emotions back....happy, sad, excited....she didn't have any emotional range when she was medicated. She is also sleeping better and has lost almost 10lbs. since stopping the meds. Those are all great things for her. My hope is that we will be able to keep her off medications indefinitely...which would be great.

Not too much else happening in our world. Just taking it a day at a time. Spring Break is now less than a week away....maybe we'll try to do something exciting! Hopefully the weather will cooperate!

Back Again

Well, eight months have passed since my last post. Thanks to a new laptop and wireless in the house (finally) I may be able to get back into the habit of blogging more often. One good thing about blogging for me is that it allows me to keep a record of how Katie is doing. It was good for me to read my post from last summer and see where she has come from that point.

We actually did go ahead and buy her a protective helmet to help prevent injury to her head when she has a self-injurous behavior episode. Unfortunately, self-injury is very common in children with autism and in some cases can be quite severe. Thankfully, we believe Katie is making good progress in this area. We recently went through the process of getting her weaned off of all of her meds and she is now a med-free (and much happier) girl. Her "speech" is returning, her smile and laugh have returned, and now we only see the self-injury when she becomes frustrated and unable to communicate her needs effectively. I am thrilled to see the progress she is making after making these changes.

She also needed to have extensive dental work done last month. This included removing 2 abcessed teeth along with many fillings. Unfortunately, her dental work had to be done under general anesthesia at the hospital, but Katie has a wonderful dentist who was extremely patient with her. I am just glad that her tooth pain has been relieved and as a result of the dental work and changes in her meds she is back to sleeping through the night on a regular basis.

That about sums it up for Miss Katie. I hope that when I post next time (with wishful thinking that it will be sooner than later) I will see the continued progress that she is making. I am also hoping that warm weather decides to show up soon so that we can get the pool open and let Katie return to her happy place of swimming and the sandbox.

Too Long...

Once again, it has been far too long since I have last posted on my blog. My intentions are good, but life is crazy and hours turn into days, which turn into weeks...and you get my drift. Life has not been boring or easy as of late. Katie's struggles have increased, which means that our struggles as a family have also increased. Autism is a life long disability. As much as I loved reading Jenny McCarthy's books about her son and his "autism" and how she "healed" him of his autism, I have to tell you that in my opinion, if you can "heal it" - it wasn't autism in the first place.
Because this blog is really because of Katie, I will use this post to talk about her and her progress. She is doing well. She completed her first year at her "new" school - which is now no longer her new school - and just "her school"......Mary and I joke about that. She gets to go to school year round with only 2 week breaks at a time, which helps with her routine and retention. It hasn't been a year without struggles. She continues to battle off and on with sinus issues...although thankfully they seem to be staying away so far this summer. She has started to have some significant behavior issues.... She has good days and bad.....we are exploring options - even a football helmet, to help protect her head when she has one of her "fits". I am also learning that it is difficult to find support when your child has issues like this. Some doctors don't consider autistic behavior issues to be a medical problem, but getting into a behavioral therapist isn't easy. Long waiting lists, little or no coverage from insurance...it makes me feel compassion for families who are in even more difficult situations than we are. Where we live there are only 2 options within 60 miles for a behavioral therapist (and no, we don't live in the middle of nowhere).
I am thankful for a swimming pool and a sandbox to help keep her occupied. And we have had fabulous weather so far this summer, so that has helped too.........
Since I know myself well enough to know that I won't be posting again most likely until after the 4th....Happy 4th.......

Field Trip

One of the highlights for fourth graders at Mary's school is to go on a field trip to Lansing, the state capitol of Michigan. Lots of parents were able to go along on this field trip, including myself. Mary was so excited to go. The kids were able to visit a children's science museum, the Michigan history museum, and were given a tour of the capitol building. Here are some highlights:

It was a pretty long day on the bus...but we still managed to have fun!

Mary getting "chewed up" by the big mouth at the Impression 5 Museum. The kids loved this hands-on museum and had a great time learning all about magnets, water, gravity, the human body and lots of other great topics.

This is Mary's class standing in front of the capitol building. It was a beautiful sunny day - great for being able to walk from the history museum over to the capitol for our tour! It was a super day!

The journey

A little over five years ago, when Katie was first officially diagnosed with autism, I felt as if my world was falling apart. I gradually progressed into a stage of grieving - grieving the loss of a "normal" childhood for her, knowing that she will most likely never graduate from college, never get married, never have children of her own.

I then moved into a stage of action. I almost went off the deep end trying to get Katie every service, every therapy, every potential help that was out there for her. Once her services were well on their way to being established, reality started to set in. The reality of who Katie is and all the things she was capable of....pushing out the screens from the windows and "escaping" the house, climbing things, eating things that aren't meant to be eaten, the list goes on and on. Reality is a long stage - as least it was for me. I think reality was age 3-5 for me. The reality that spoken word will never be Katie's primary or preferred method of communication. The reality that she might never be completely toilet trained (although she totally proved me wrong on that one and is doing a fabulous job!) The reality that God chose Katie for us to raise. He gave her to us. He entrusted us with this precious life. A unique life, unlike many, but one that has since become the norm for us. I have often told people that I am thankful that God chose me to be Katie's parent. Not because I'm a great parent, because that is not what we are called to be, but rather because I love Katie, and I try to teach her that Jesus loves her, and I am grateful that she is in our home where she is treated with love, respect and equality to the fullest that we are able to give her. It took a long time for me to be able to say those things. It was definitely after I had passed through the "reality" stage....it was more like what I call the "routine" stage.

Although nothing in our life is really routine (except for Katie's schedule) I believe that I (and we as a family) are now in the routine stage with Katie. This is where, even though things are never easy - and if you are my friend on facebook, you will already know that things lately have been anything but easy. Katie has been extremely emotional, tantruming all the time, appearing to be completely out of sync, which leaves me standing there, looking at her, and wondering - "how can I help you? Why can't you tell me what is wrong? -- I feel horrible for her that in many ways she is "trapped" - unable to tell anyone what she is feeling, if she is hurt, if she needs help. That is the routine stage - learning to know how she communicates - and being able to meet her needs even though she can't verbal tell you what she needs. I write all this really only for my own reflection - to look back and say - look how far we have come...how much progress we have made, how much progress Katie has made.

It has been a very tough week so far - probably the roughest we have had in quite some time - and maybe that is what is causing me to be reflective - to say out loud that I wouldn't want my life to be any other way - that having Katie in my life makes me a better mother, a better wife, a better friend - and most of all has taught me a lot about God's love and acceptance - and how His hand truly does guide all things. Thank you Lord for our precious Katie. Help me to remember what a blessing she is, especially during the trying and difficult times.

Found It...

Here is the picture of Mary from the Autism Walk.....just so we have proof that she was there too!

Walk About, Talk About Autism

We had a wonderful day Saturday at the annual "Walk About, Talk About Autism" walk for our local chapter of the Autism Society of America. It was a bit chilly out....49 degrees to be exact, but Bill and the girls walked a little over 3 miles. (I walked a little bit less than that :)

Mary was with us, too, but for some reason I must not have uploaded the really cute picture I have of her with her autism tattoo on her face...I'll have to figure out where it is on my phone and add it later this week....but it was a great time for the 4 of us...and Katie did exceptionally well.

There was a clown with balloons, crafts, games, prizes, lunch and of course the walk itself. It is a really nice opportunity to see and meet people from our local autism community. Many people who have been a part of Katie's education were there as well as several families we know who also have children with autism.

I think Katie was pretty tired by the time this picture was taken. We were there for about 4 hours....and with all of that walking, she definitely was a trooper!

A Day of Pondering

I usually use this blog only to reflect on our family and the things that take place on a daily basis -- our journey through autism, school happenings, vacations, etc., but today...my mind is full of thoughts - and I find this the best outlet to express what is bottled up in my mind.

If you know me personally, outside of the blog world, you know that God has taken me on many journeys during my walk with Him. Journeys of both joy and pain. Happiness and Sorrow. When going through many of these journeys, especially difficult ones, it is often hard to see the big picture, to understand the whys and hows. I am the first to admit that I have gone through some very dark times in my walk with God. He has, and will, always remain faithful, even though the circumstances of this life would cause me to doubt and question Him and His ways. "Why would you do this God?" or "How could you allow this to happen?" With time, many of these questions are answered. God gently reveals His plan and purpose to us, in His time, in His way. For me this is usually after a period of great sorrow, and then great growth and healing.

Today, I was exposed to great sorrow. Although this sorrow was not in my own life, it has impacted me greatly as I have tried to process this sorrow throughout the day. It has taken me back to a time when I personally experienced great sorrow, and I again found myself traveling down the road of questioning. "Why, God, why would you allow this to happen?" Maybe it is the human nature in me - the desire for everything to make sense. The difficulty of allowing my finite mind to understand the complexities of an infinite God, whose wisdom, mercy and grace are far beyond what I will ever truly be able to comprehend this side of heaven - or perhaps it is lies in my inability to find anyway to comfort those who are experiencing the sorrow. For Christ alone is our comfort - and until the questioning, and often even doubting are complete - that can be a difficult concept to grasp.

What I do know is this,"God is our refuge and strength, an everpresent help in times of trouble. Therefore we will not fear though the earth give way and the mountains fall into the heart of the sea."

Just a few of the things I missed blogging about...

I'm BAAAAAAACK!!!

Okay everyone (all 2 of you)....don't die of shock, I'm back. I know, I've become so dependent on Facebook to keep up with everyone that I haven't done much (well, any) blogging in months. A lot has happened since September. School started for Mary and Katie has continued on at her new school. We took a 10 day trip to Disney which was amazing, we endured another Michigan winter, Katie had a broken arm, and needed 5 staples in her head (2 different occasions)....yep, a lot has happened. I promise to be more faithful to my blogging...and maybe I'll even throw in some retro (well, from January) pictures to get everyone caught up........

Sick Day

Well, it's our first official "sick day" of the year. Katie is home with me. It's so hard for me - even at her age of soon to be 7 - to know exactly when I should keep her home. She has an off and on cough which I attribute mostly to allergies - and this wonderful sinus thing that I have had for the past week. She seems happy - just kind of spaced out...I'm hoping to be able to send her back to school tomorrow.

Not too much else happening around here. Girl scouts starts this week. Mary is also going to be playing on a volleyball team -- she is excited about that. We are trying to "steer" her towards sports in which her height may be an advantage. I"ll keep you posted on that one.

I continue to read, read,read. Just finished "Catching Fire" - the sequel to "The Hunger Games" - if you are looking for good fiction, I highly recommend this series.

Well, I guess that's it for now. Back to hanging out with Katie and trying to get her well....

I Know...

I know...I haven't quite gotten back into the blogging routine yet. We are barely getting into the school routine, so hopefully the blog routine will follow soon after. The school schedule is basically kicking my butt - there is no other way to put it. Between my haphazard work schedule which has me working all kinds of assorted hours and having to get up at 6 am every day to get Katie ready for the bus, I am basically spent.
The girls are both doing well. Katie is loving school. She is so happy...it is a great thing to see. Bill and I went with her class to the fair last week and it was amazing to see her class as a whole and how the teacher and aides are so awesome with the kids. I can see why Katie loves it. We are so happy to have her there - and she really seems to be fitting in as well as she could anywhere. At this point I believe she is in the best, most ideal place for her - and that is such a great place for her to be.
Mary is loving 4th grade - although she did make me aware that 4th grade was a bit "too stressful" for her. (I think she is over that now). Homework is not something many 4th graders are fond of, but Miss Mary would much rather be riding her bike than learning how to spell marvelous or hazardous...so let's just say --- we're still working on the routine. Maybe we'll have it down by Halloween. :)
As I mentioned - I am back to work for the most part - but my hours are kind of all over the place. I am thankful for a good job, so no complaints - but I do find myself needing a nap here and there to get caught up....
I continue to be reading some amazing books. My most recent book club book was a mystery - which I don't usually read or like - but I really enjoyed it. "Whispers on the Bayou" by Mindy Starns Clark.
Hope this finds you all well - and I will try my hardest to get back into the blogging routine!

Back into a routine

Yes, I'm back. Hopefuly blogging will once again become a habit for me. It seems the summer was so crazy -- between Katie's new school schedule complete with summer classes and Mary's desire to always be going somewhere and doing something - I didn't find myself blogging too much. Well -- now both of the girls are back in school. Mary is in 4th grade - which is mind blowing to me ---she was so excited and nervous this morning. I'm praying for an excellent year for her. Here we are this morning in one of Bill's famous self-portraits ---

I am continuing to be a ravenous reader - it's almost like I just can't get enough of a good book. :) My book club keeps me in great Christian fiction and my "want to read" list of new releases continues to grow.

Here's to a great school year for all of our kiddo's out there....and hopefully to more regular blogging from me :)

Vacation Rocks

Yes, I'm back. Guess I'm not doing so well at blogging in August. We are finishing up a great week of vacation - complete with a trip to the Carfax 250 at Michigan International Speedway. If you are my facebook friend, you have possibly already seen this picture ----

It's no secret that I love NASCAR...so when the opportunity was given to Bill and I to once again go to the race and spend time on pit lane and in the garage - we definitely jumped at it. Thanks friend...you know who you are!

We also just got back from three days in the Wisconsin Dells at Great Wolf Lodge. This was our first visit to the Dells - and we loved it. I don't love the Chicago traffic (hard to believe I lived there for 6 years - and for all practical purposes that is really where I learned to drive!)...but now, Chicago traffic does nothing for me. We got home a little after midnight last night and let me just say we are all a little tired - and I may never get the laundry caught up - but oh well, that is what vacation is all about.

I hope all of you are enjoying your summer .....more blogging to start soon.....school is almost back in session!

August Already?

Sorry for the extended absence from the blogging world. Sometimes I get a little caught up in the girls being home (Katie's two weeks at school went very fast!!! She is now beginning her second week at home before heading back to school for two more weeks). I also have been tryinig to knock off some projects around the house. Bill and I drained the pool today - scrubbed it out and are in the process of re-filling it. What a lot of work! But it was definitely needed. Hopefully it will make it until school starts and then we will take it down and put it away.I have a feeling we are about at the end of the life of this pool anyway -- and a new purchase will need to be made when pools go on clearance here in the next few weeks.

Not a whole lot else going on. I've just been spending way too much time on facebook, reading (see the new additions to my reading list) going to movies and just having a good summer with the fam. More as it becomes available. Hope you are having a great summer, too.

Schools In ....for the Summer

Well apparently Katie is taking to this new school thing much better than we had anticipated. Today is day 3. She loves the bus, so that has been extremely helpful. She has over an hour ride in the morning...which we aren't thrilled about, but unfortunately that is really our only option. We could drive her, but it's 30 minutes each way - not the ideal situation either - so for now, she is on the bus.

I talked with Katie's teacher from last year yesterday. She has been going to school with Katie to help the new school and their staff get adjusted to Katie and vice versa. She is pleased with how things are going - and so far, we are too.

Mary is still at camp, so this has been a pretty quiet week around here. I have actually been able to dig into a few projects - like organizing Mary's bedroom. Wowza - I think she likes to collect things - like rocks, paper, etc. She'll be surprised when she comes home tomorrow :)

Have a fabulous Thursday.