My Bad Day

It can be a very normal day, a good day even.  The sun can be shining, the birds can be singing.  All may be right with the world, but when one little thing goes wrong, it becomes Katie's "Bad Day".  The littlest, tiniest thing may get it started.  Not getting to eat when she wants to, or being told that she spilled something on her clothes.  It may be due to an argument she has with a sister, or if I tell her we can't go to Mc Donalds.  If she is upset, angered, disappointed or embarrassed at all, she will well up with tears, hang down her head, and say, "This is my BAD DAY".  It sounds kind of cute when you hear it in a story, but it is NOT cute at all when you hear it so often.  My oldest daughter got so tired of hearing it that she exclaimed, "Every day is your Bad Day!" 

When someone tells you that they are having a bad day, you want to reach out to them, to help them get through the hard times.  You might feel sympathy, or treat them a little kinder or more delicately.  You might give them a break on things, and even pick up the slack so that their burden isn't so great.  But, like the boy crying wolf, Katie is loosing sympathy points at my house rather quickly.  Don't get me wrong.  If something is really bothering her, or if she is hurting or struggling, we are all there to support her in any way that we can.  But after it was originally  comical, and now rather tiresome, it is all we can do to just get her through her moment of heartache without getting frustrated with her.  Because once the waterworks start, and the yelling follows, there is no talking her down off that cliff. 

I am sure some degree of Katie's angst is stemming from the fact that she is a teenager.  I am positive that parents of teens out there deal with similar situations on a regular basis.  I have an older teen, so I know this well.  But when you mix teen angst with Autism, it is a lethal combination.  Now the doors are slamming, the feet are stomping away, the music is blaring, and the term, "It's not fair!" are common occurences.  And you know how sometimes you can't figure out just WHY your teen is upset about something?  Try that with an Autistic teen that not only doesn't understand the feelings they are going through, but also doesn't have the words to express those feelings.  Or, in Katie's case, when she is so upset about something and crying, you can't understand a word she is saying!  There is one phrase I do understand, "It's my bad day!"

This is how it all gets started.  Katie will get off the bus from school, happy and laughing and looking for snacks.  "Katie, how was your day?"   "It was good Mom.  We watched a movie and I had a student council meeting and my friend sat by me in lunch!"  "Katie, do you have homework?  Let's do that before you have a snack (or watch TV, or listen to music)."   "No, Mom, I want to...(fill in the blank)."   "No, Katie, you have to do your homework first."    "TODAY IS MY BAD DAY!"      stomp, stomp, stomp SLAM! 

Sometimes it feels like I must have the patience of a saint to deal with Katie.  But then sometimes, even more times, it feels like I am the worst monster of a mother for the frustration that I feel.  I talk about Katie alot, because I love her so much, but also because it helps me to deal with my uncertainties and anxiety I face when I struggle with raising her.  I also talk about her alot because so many people are interested in her daily adventures and triumphs and tribulations.  I live my life with Katie like it is an open book, and I guess when you leave your book open, people tend to pick it up and read it.  I have been told by friends and strangers and coworkers and family that my husband and I are strong and are doing a wonderful job with Katie and her sisters.  I can't tell you how good that feels to hear, because it doesn't always feel like we are doing the right thing.  It doesn't always feel like we know what we are doing at all.  I know I share alot of Katie's success stories, but I have just as many stories that make me want to cry.  But if I can turn "My Bad Day!" into a good night, then our Adventures in Autism will be a success.

Saving The World

We were so proud when Katie was selected to become a member of the Honor Society.  I thought that it was THE biggest deal, and nothing could make me prouder.  Once again, I stand corrected by the daughter that I (unconsiously) underestimate over and over.  Her projects for honor society began almost as soon as she was selected.  At the end of the school year the group was cleaning out lockers.  Then before school started they hosted the open house for new students.  They have had meeting every other week, candy sales, bake sales, hosted the parent teacher conferences, ran "slipper day" at school, participated in "Rake and Run", and most recently went shopping for needy families at Target.  That is a lot of projects for one group, and Katie has insisted on participating in ALL of them.  She writes down all her events in my calendar, reminds me about her plans before hand, and enjoys every minute of the project.  I am blown away by how involved she is in this group.  I am blown away by how much she enjoys being a part of something bigger.  I am also blown away by how the group excepts her for who she is, and includes her in everything.

On the way home from her latest project, Katie started to make her own plans.  She decided that she wanted to help "all the children in the world"......"you know, the ones in Tennessee and Florida".  First, she wanted to host a lemonaide stand.  I told her I didn't think that would go over very well in Michigan, in December.  So then she decided we should try a garage sale.  Again, a bad winter weather choice.  She started getting frustrated with me then, and said what she really wanted to do was earn money so she could take all the kids with cancer to Disney, and show them around.  I then had to further disappoint her when I told her I didn't think that people would allow their kids to go to Disney with just a teenager as a chaperone.  This had to be the cutest conversation we have ever had.  She was so determined to do something to help, so determined to earn some money to finace her charity events.

I know quite a few girls Katie's age that are as interested as she is in helping others, girls and boys actually.  A friend has a daughter who is just dying to ring the bell for the Salvation Army this Christmas.  My other 2 daughters, and many of their friends, have donated 8 or more inches of their hair to children with hairloss.  And of course there are all the classmates of Katie's on the Honor Society.  But Katie is Autistic.  Autistic kids generally aren't too concerned about other people and their feelings.  There are exceptions to that, of course, because there isn't a single Autisic trait that is absolutely true for every single Autistic kid.  But, having said that, Autistic kids have enough trouble figuring out their own needs and figuring out their own feelings, let alone worrying about what others are thinking or feeling or needing.  Katie takes  a whole class in school on social cues and holding conversations and interpreting the actions of others.  It is not something that comes naturally to these kids.  It is not that they don't care for others, or are selfish or self-centered, but it is just an element that is lacking in them.  So for Katie, who by her diagnosis would be expected to not pick up on these things, for her to want to help others in need, that is just remarkable to me. 

That brings to my mind the whole debate of nature vs. nurture.  If Katie, by the "nature" of having Autism, is not expected to care about others, does that mean that the way she was raised and the examples that were shown to her helped her overcame this particular hardship?  If that is the case, I have my parents to thank for that.  From the time my children were little, my parents have brought them to all their Kiwanis events.  My girls have done everything from food and clothing drives, to Kids Against Hunger, from ringing the Salvation Army bell to selling peanuts, from hosting the Angels giving tree at Christmas to walking in the Relay for Life.  It is no wonder the Honor Society snapped Katie up with a resume like that!  My parents instilled in my children the drive to help others, and to enjoy doing it.  That these events they attend are fun, and the feeling you get from doing something for the community is just a big bonus.  My parents "nurtured" in them the desire to make this world a better place for others, especially the children that need it most.  I may be completely off my mark giving them all the credit, but doesn't that have a ring of truth to it?  Doesn't that make a lot of sense?

Whether Katie's compassion was born with her, or taught to her, she has the biggest heart I have ever seen.  I am so proud of her, not only for her day to day accomplishments, but especially for her strive to be kind and giving to others.  As always, I can learn alot about life by just watching how she overcomes her hardships without being jaded by them.  Not letting them hold her back.  I don't even think she would list Autism as a disablity if you asked her.  To her it is more like a personality trait.  I have a harder time accepting it and rationalizing it and living with it and getting over it than she does.  But I am trying to learn from her example.  To learn how to give, learn how to love, learn how to serve.  I just try to keep up with her, running all over the place while she is making life better for others.  If you want to keep up with Katie's Adventures in Autism, go find her out saving the world.

In No Big Hurry

I am always in a hurry.  I have been rushing around since the day I was born.  I will admit that I have a very busy lifestyle, with 3 kids who are in a bunch of different sports, a busy husband, and 2 jobs.  I also have to be honest and say my "time issues" are not exclusively related to all that.  I am one of those people that have to be at least 15 minutes early for everything, or I will start freaking out.  My heart starts pounding, I start to sweat, and then my stomach will start to hurt.  Everyone has their issues, everyone has their quirks, and this is mine.  God knew this about me, and thought it would be really funny to send me Katie, the human turtle. 

Katie is in no big hurry to do anything or go anywhere.  Getting her out of bed in the morning is a chore in itself.  She will literally sit in the bathroom for a half hour if I let her.  I know alot of people are like this, especially teens, but she is to the extreme.  There is no option of letting her get herself ready because it would never happen.  Beyond being sleepy in the morning, she is just not motivated to do just about anything.  If I tell her to do something, I have to tell her about 5 times before she actually does it.  I am not sure how Autism plays into all of this, but I do know she is easily distracted and looses her train of thought.  If the TV is on, she will stop whatever she is doing and watch it.  If someone is talking, she will have to eavesdrop and find out what is going on.  Sometimes I feel like a drill sergeant, barking orders at her. 

Walking upstairs, going to bed at night, is like she is walking in slow motion.  She puts her hands down straight at her sides like a soldier, and takes one slooowwww step at a time.  I can stand behind her and yell, but that doesn't make her go any faster.  When we are in a hurry to go somewhere, or it's the end of a long day, I just about go out of my mind with frustration.  I don't think I can acurately paint a picture of how riduculously slow she can move.  I know she isn't doing it to make me mad, I know in my heart that she wouldn't tourture me on purpose.  I also know that 92% of this is MY problem, and I need to just chill out and take a deep breath.  That does not make it any easier to handle.  These are the times when I really don't like myself as a parent.  Knowing that your child cannot help what they are doing but feeling angry and frustrated anyway, that is the hardest part.  A parent is supposed to give their child unconditional love, right?  It doesn't feel like unconditional love when I am seeing red.  I feel like a monster, and looking back on the moment later on, I feel terrible.

So what can I do about this?  What can I do to hurry Katie along, or more resonably learn to deal with her slowness?  I have no idea what so ever.  There are many aspects of Autism that I have faced.  Many challenges that we have conquered together.  Sometimes, however, our Adventures in Autism create issues that we just can't solve, and to me that is the hardest thing of all.

Tipping My Hand

I just attended my 20 year high school reunion this past weekend.  I am not sure who was more excited about it, me or Katie.  She has been closely following the plans all year, studying my yearbook, stalking my former classmates on Facebook, and wanting to know exactly who would be attending.  Every time we would run into a friend at a store, or church, or in the community, she would ask, "Are they going to be at the reunion party?"  When the day day came, she could barely contain herself.  She was very excited that my childhood best friend was there with her children.  When the reunion group took a tour of the school, I let her walk with her friends, but kept a close eye on her.  My husband kept saying, " She is fine, relax", but I wasn't sure how she would act or how my former classmates would react to her.

Thanks to the miracle of the internet, it is so easy to keep in touch with people that you haven't seen in years.  Years ago, reunions were spent filling everyone in on what you had been doing that past 10 or 20 years.  Now we get hourly updates on everyone we have ever met, so you can go up to someone you haven't seen in 5 years and say, "I loved your vacation pictures!"  Because of this, and because I am so vocal about Katie and her Autism, I knew that my classmates would be aware of her and her "Katie-isms".  I was actually very comfortable about her being around everyone.  At one point she suddenly decided she needed to be personally introduced to everyone there.  I told them, "You haven't officially attended the reunion until you have met Katie!"  She LOVED that, and laughed and said "Hi" to everyone there, shaking their hands.  She gave out quite a few hugs as well, especially to those that she already knew.  The feeling of acceptance that I felt for her was overwhelming though.  You really never know how people are going to act, and I was touched that so many took the time to speak with her and get to know her a little.

Over the next 2 days during the reunion activities, I was approached over and over again about how my classmates have been following this blog.  One had told me that she feels like she has a glimpse into the world of Autism when she reads them, and although she doesn't personally know anyone with Autism, she has a better understanding of it from my blog.  Another commented on how "raw" my blogs were, telling it like it is, "warts and all".  Instead of trying to act like every day is perfect and magical, I am tipping my hand to show what life is really like.  I don't hide our pain or our struggles or even our success.  I try very hard to reflect not only what Katie and my family experience, but also share what other families affected by Autism go through.  However, since I include others, I have to be cautious to not offend anyone, or misrepresent them.  I hope that those who read my blog understand this.  That this is just me and my take on my daughters life, and I would never want to hurt others by what I have to say.

I don't take praise very well, I usually try to deflect it somehow, but I was really touched at how many people enjoy what I have to say, and look forward to reading about our adventures.  It really touched my heart that my classmates took the time to speak with me about my writings, and about Katie and how she is doing.  They could have easily just talked about themselves, or high school, or about anything else.  But time and again they approached me to say how amazed they are with her, and how they look forward to my postings.  As embarrassed as I get when someone focuses on me or something I do, I love to hear that I was able to teach others about our Adventures in Autism.  To help others understand how different our life is, and to let them know how much I love my Katie.

Passing Me Up

Most of my relatives are pretty tall.  My brother, sister and father all stand over 6 feet, and my mother is just under that.  I am only 5'6", and I say "only" in comparison to my family.  I know that I am of average height for a woman, but I actually had to stand on a box in our family portrait.  It should be no surprise to me that my daughters are showing every sign of passing me up in height.  My oldest daughter looks me right in the eye, and Katie is not far behind her.  I think I am only an inch or so taller, but since she has been growing over an inch every few months, my reign as the tallest female in the house is almost over. 


I am an overprotective mother, I will admit.  Especially when it comes to Katie.  If we are crossing the street, or walking across a parking lot, I hold her hand.  It is not that I don't trust her, or think she is a baby.  But she lacks a certain sense of safety.  She lacks a ceratin awareness of her surroundings.  She would be the one to walk right in front of a car, not even paying attention or looking both ways.  So there we go, holding hands, and now we are almost the same height.  Do we look goofy?  Probably.  I could care less what people think when they see a teenager holding hands with her mother.  My main concern is how Katie sees herself.  I do not want to embarrass her or undermind her quest to be a teenager.  Once again I walk the fine line between protecting her and letting her be as normal as she can. 

Fostering inderpendance in a child that has a disablity is a double edged sword.  Obviously I want Katie to be able to take complete care of herself physically.  It would be so much easier if I could just tell her to go get ready for school, and she was able to do it all, and do it right.  But Katie has poor fine motor coordination, as well as somewhat limited control over her gross motor (so her body is all over the place).  The results are clothes inside out and backward, pants not buttoned or zipped, and crazy hair.  It takes 5 times as long from letting her do everything herself and then fixing it, to just plain doing everything for her.  I am sure you can see the dilema.  When mornings are hurried, like almost every one is, I want to take over and get the job done.  But, at the end of it all, who am I really helping?


I don't think this problem is exclusive to parents of children with special needs.  I think there is a point in every parent's life when they have to decide to pull back.  To let their child spread their wings.  Sometimes we would like to chase after them, carrying a safety net to catch them if they fall.  But you better not let them see you.  Half the importance of letting them go is to instill in them the confidence and sense of accomplishment.  Letting them learn from their mistakes, letting them test the waters of life.  But at the same time we are holding our breathe, poised to spring into action if they need us, waiting on that call.  One of the best feelings in life is to be needed by your child.  But we have to put that aside, and wish them to grow up and find their own way.  Growing up is a different process for Katie though.  She is way behind other girls her age when it comes to maturity and independance.  I try to create situations where she feels grown up and like a teenager, but still has the supervision that she needs.


One day in the near future, she will finally pass me up.  Then she will be the one reaching down to me, leading me along.  There is not a guide book or a manual for raising a child with Autism.  There is no "set time" that you let them go.  Each child is different in their challenges and their strengths.  I have to learn to trust my instincts when it comes to these things.  Learn to hide behind the bushes when she walks down the street, call her friends house to check up on her without her knowing that I am.  Our Adventures in Autism won't end when Katie is taller than me,.

Homecoming Queen

We had gone from store to store, looking for a Homecoming dress for my oldest daughter; mall to mall, driving all over. Our last stop was a local resale shop, where dresses were sorted by color. We were looking specifically for a short, green dress, per my daughters instructions. After selecting several dresses to try on, my daughter and her friend went to the dressing room. First she came out in the short, green dress she just "had to have". It was fairly hideous, with way too much beading and detail. The second was a short, poufy purple dress that reminded me of Shirley Temple. No. The last dress she came out in blew us all away. Crystal blue, with a strapless, fitted bodice, but flowing to the floor. She looked like Cinderalla. We were all speechless as she twirled around and around. We had found "THE DRESS".

As we were waiting for the friend to try on her dresses, Katie was looking around at what the store had to offer. "Mom", she says to me as she made her way around the racks, jutting her hip out to the side with her hand on her hip, "Mom, I am going to be Homecoming Queen!" I just had to laugh, for no reason other than my girls were all born with their father's confidence and not mine. "I am going to be Homecoming Queen, but if I don't win, I am still going to Homecoming." Now, Katie is just in middle school, so any chance of her going to the Homecoming Dance is still at least 3 years away. That didn't stop her from shopping for her dress (and calling double dibs on her sister's dress). She fell in love with the strappy purple number, and thought that I should buy it for her right then and there. In any case, she is bound and determined to attend that dance when it comes. And she is bound and determined to be crowned Homecoming Queen. I am not one to shatter her dreams. As long as she understands that there can only be one Queen, and a lot of girls in her class want to be it, I will go ahead and let her run for it when the time comes.

In my mind I can already picture it. Here Katie comes, clinging to her daddy's arm as he escorts her down the football field. The announcer introduces each girl, and when he comes to Katie, it goes something like this, "Next up we have Kaitlyn Cassette, escorted by her father. Katie is on the Honor Role, and a member of the National Honor Society. She is involved in Student Council and her church activities. Katie enjoys bowling, hanging out with her friends, and listening to her music. When she graduates high school, Katie dreams of being a greeter at Disneyworld." Then, as the previous queen walks back and forth amongst the girls, I will be up in the stands having a panic attack. When she finally puts the crowd on Katie's head, the crowd goes wild. I leap over the stands to attack her, and she is jumping up and down, screaming in excitement. Her grandparents are up in the stands, with her sisters and the rest of the family, beside themselves with emotion. Can you just see it? Can you picture it in your mind? Did I just make you cry?

Having a daughter with Autism is a roller coaster ride. The emotions alone take me on a ride every day of my life. A situation like the one I just described would be a culmination of 17 years of struggles, trials and tribulaions, triumphs and heartache. When Katie has something special happen, it is a direct reflection of how far she has come in her short life. The obstacles that she has navigated. It is also fullfilling to me, and her father. And to all the family, friends, teachers, and community members that have assisted her along the way. Her success is our success, and the pride we feel is overwhelming.

I am not saying that Katie is going to be the Homecoming Queen when she is a senior. But I am not saying that she won't be either. She is wanting more and more each day to do what her classmates are doing, go where they are going, and live like they are living. So who am I to tell her she can't? The whole world is out there, just waiting for her to take it on. There will be things that she will try that she will fail at. There will be things that she wants to do that she just can't do. Her heart will be broken by friends, by teachers, by her parents, by the world. But the same is just as true for my other two daughters. So if our Adventures in Autism lead her to becoming royalty, I will be the first in line to shine her crown.

My wits end

Another summer is drawing to a close. I am not sure how I made it through in one piece. This was a very different summer in our house, very different from all the past summers. My kids were home with me most every day, and even though we had many activities going on, we still found plenty of time to get on each others nerves. We had a little too much "togetherness" I would say. I know quite a few teachers, between friends of mine who are teachers and family members. They all dread the end of the summer, and hate when I am counting down the days until school starts, so I apologize to them, but I don't know how much more of Katie I can take. The summer days were fine when we had something planned, something to do. My other daughters spent a lot of time playing thier sports, so we were always running to practices, games, or camps. Summer catechism also occupied a good 3 weeks of our time. Play dates with friends and cousins were also a blessing, something to look forward to. But the down time between all these things just about killed me. My other daughters have no problem with down time. In fact, since they are so busy most of the time, they look forward to some loafing off, watching TV or movies, reading books or magazines, playing on the computer or listening to thier music. Katie doesn't know how to loaf off though. She will maybe watch a little TV, maybe listen to some music, but sooner or later she will find me and follow me around. I personally don't have a lot of free time, even if my girls do. Since I work midnights, my day time when I am not working is spent catching up on chores, laundry, housekeeping, grocery shopping, the typical household things that keep moms busy. When the girls are in school it is no problem to get everything done. When they are home and I am running them around to their activities, the chores pile up. Then, when we do have "down time", I spend it frantically playing catch up. And they don't understand the responsibilites that moms have, and that those responsibilites don't stop for summer vacation. Katie will want to go for a bike ride, or plan a party, or any number of things that she will want me to do with her. I try to entertain her as much as I can, but there comes a point when I just need to get some work done. It is then that she decides to "help". I love that she wants to help, and I think it is important that she does some chores around the house, but all moms know that it is just easier sometimes to do it yourself. You can spend 3 times more effort fixing what they just "helped" you do. Katie also has a tendency to want to follow me around the house to "talk". It is very hard to explain how exhausting it actually is to talk to a child with autism. It can be entertaining, it can be heartwarming, but it's also mentally and physically draining at times. You may think, "how hard can it be to just talk to her?" Every conversation is a debate, every conversation is a negotiation, every conversation has already been had a million times before. When a child will not take "no" for an answer, when explaining the reasons to them only creates more drama, when tears and yelling are the results of what they don't want to hear, it is too much to handle. Katie may seem very entertaining to family and friends, but to parents, there is no getting away from the constant conversation. I can tell you all day about how hard it is to have a child with autism. I can write this blog, call you on the phone, cry on your shoulder. You can even spend time with Katie for awhile and see for yourself how she can be. But living it 24/7, spending the summer having her haunting my shadows, is a completley different story. She is a good kid. She is fun-loving and sweet, funny and entertaining. She is very low maintenance in most aspects. There are children that are much more difficult in every aspect, and I am very blessed to have her as my daughter. But I also have a frustration threshold that gets tested, especially at the end of every summer. My wits are at their end. I am ready for that school bus to come down the street. My brain is tired and my patience is gone. This summer our Adventures in Autism felt more like a punishment than a relaxing vacation.

Teenage Dreams

Well, it is official.  Katie is a teenager!  This milestone in her life is bittersweet for me, but so exciting for her.  She celebrated with her usual multiple parties, from simple family get togethers, to her official "friends" pool party.  I swore last year that it was going to be her last friends party, but somehow she talked me into another one. 

Now that she is a teenager, she thinks that she needs to be instantly independent of me.  Suddenly everything is, "MOM! I can do it myself!  I am a teenager!"  So I let her do as much as I can, even if that means I have to re-do things (without her knowing).  Her shirts sometimes end up backwards, her tank tops inside out, and her shoes might end up on the wrong feet, but she is trying.  The bathroom ends up with toothpaste all over the sink, water all over the counter, and the towel on the floor.  The pillow case is half off her pillow on her bed, and the sheets hanging out of the comforter, but if I ask her to make her bed, who am I to complain?  When I ask her to put her clothes away, the drawers are jammed shut, and the clothes crooked in the closet.  I think she secretly likes to do household chores, though, because it makes her feel grown up.

My least favorite part of this whole "teenager" business, is her attitude.  Now everything is done with a huff and a stomp of the feet, and a complaint.  I am convinced that she learned that directly from her older sister.  She has also taken to yelling at her sisters to leave her alone, or fighting with them over the TV and clothes.  Like I said, this is all bittersweet.  No mother in her right mind would wish for sibling rivalry, but to me it illustrates that she is right on track with other kids her age.  She is going through the same "stages" and experiences the same growing pains that teenagers everywhere are feeling.  So, lucky me, I now have 2 daughters in their teens. 

My oldest daughter said to me the other day, "I don't like Teenage Katie".  I know what she meant by it, because Katie used to be so docile and accommodating, and now she is somewhat surly and loud.  In private I am cherishing every minute of it, because I love it when she hits a milestone on time, and she can feel like she is just a regular teen living her life.  Every time I hear her stomping around and growling at someone, I secretly smile.  This probably sounds insane to some people who have "regular" teens that are driving them crazy, but for the longest time I did not know if Katie was going to be able to live a regular life, and experience all the things that other kids her age went through.  Like middle school and dances and detentions and having friends over and telephone calls and birthday parties and I-Pods and designer clothes and pizza and lockers and swim class and honor society and Pepsi and slumber parties and everything else that every other teen dreams of and lives every day of their lives.  And Katie has done it all. And I love it.

I know some people are reading this and thinking, "that doesn't sound like the happy Katie that I know".  I don't mean to paint a picture of a crabby, uncommunicative monster, because she is far from that.  She is still that most cheerful kid I know, and always has a smile and a hug for everyone.  She loves to dance to her favorite music and play on her I-Pod, and talk to her friends and hang out with her cousins.  There has just been a definite change in her demeanor over the last few months.  And I know that it is completely normal for a teenage girl.  I am not complaining about it in the least. Sometimes our Adventures in Autism are not so different from every other teenager.

Sister Mary Katherine

Katie has spent the last few weeks attending summer catechism.  It is an intense 3 week session that completes an entire year of catechism classes.  Katie has been attending catechism classes since she was young, and always seemed to enjoy them and learn from them, but not nearly as much as she has absolutely loved this summer session.  I don't know if it the constant repitition of the daily Mass, or the building on the concepts from the day before instead of the week before, but she is soaking it all in.  She loves the teacher, loves her classmates, loves the prayers, and especially loves the snack break.

I was doing the dishes last week, and Katie was all over me.  Every time I turned around, there she was.  I finally told her to get out of the kitchen so I could get my work done and she said, "But mom, I am trying to help you. And I learned at church that I am not too young to serve the Lord."  I almost fell over when she said that.  First of all, it was the cutest thing ever.  Second of all, it showed me that not only is she learning the lesson, but also understanding how it fits into daily life.  For me that is the hardest part.  I teach catechism to a much younger grade, and it is very difficult to translate the lesson into the "every day".  It is one thing to read a chapter, answer some questions, and learn a prayer.  It is a much more difficult chore to look at that concept and say, "what does this mean to me?"  And with Katie being autistic, abstract concepts are one of the hardest things for her to interpret.  Literal topics, and facts, are much easier for her to handle. 

A few days later, Katie was down the basement "talking to her friends", and I needed her to come upstairs for dinner.  I yelled down to her to come up and she says, "Mom, I am reading the Gospels!"  How can you help not smiling a little at that, or even tearing up.  It is amazing to me how she has embraced her religion.  It got me to thinking.  I wonder why religion is so easy for most individuals with cognitive and neurological issues.  Have you ever seen how devote people with Downs Syndrome can be?  They are the biggest believers out there.  They don't question religion, or make a fuss about going to church.  They are the first in line to go worship.  They know all the prayers, all the gestures, all the traditions.  They love God without apology or embarrassment or hesitation.  That is also true for the few Autitic people I have seen in the religious setting.  When I look at it logically, I would assume that anyone with any kind of cognitive disablity would struggle with religion because it isn't black and white.  It can't be proven.  It cannot be explained completely by any one person.  Faith is hard.  "Regular" people who are highly intelligent can have a difficult time with it.

Going to church with Katie is another experience in itself.  She knows all of the responses (and does them loudly), sings all the songs (loudly), and runs up to get communion.  I have been working with her this summer on being more reverant, but do I really want to curttail her enthusiam for the Mass?  Or am I doing this so I am not embarrassed when the other members turn and stare?  I have learned over the years to not worry about what other people think of Katie.  It is their problem if they think she is weird or strange.  I need to be proud of her and encourage her to be as loving in her faith as she is.  I have, in the past, explained to people sitting around me that she is Autistic.  I don't do this because I have to, or because I am apologizing for her, but so they understand that she isn't being rude or disrespectful.  I have turned many evil stares into a "God Bless You" when I have shook hands and said to them, "I hope my daughter isn't disturbing you.  She is Autitic, and she really gets into the service."  That way that person can go home feeling like they witnessed something beautiful, instead of going home angry, thinking that a child was misbehaving and not being disaplined for it.  Sometimes a few simple words can make all the difference in the world.

My family says a prayer before eating dinner, and my girls say a prayer with me before bed each night, but those are more rehearsed and memorized prayers.  I walked into Katie's room to find her with her eyes closed. "Mom, I am praying to God."  As she sat there with her little hands folded and eyes shut tight, I joked to my husband that she was going to be the first Autistic nun,  so I nicknamend her "Sister Mary Katherine".  Now, every time she quotes a lesson from catechism, or is telling her pretend friends about the Gospels, I call her that.  I never thought that our Adventures in Autism would be our ticket into heaven.

Grasping At Straws

Since I am pretty vocal about my daughter's Autism, it seems that people feel comfortable sharing their "autism stories" with me.  I hear all about other Autistic children, from their grandparents, aunts, uncles, neighbors, friends, parents - friends, congregation members, and complete strangers.  Most of what I hear, I take with a grain of salt because, like I have said many times before, if you are not a parent of an autistic child, you just really don't "know" what it is like.  Of course, that does not diminish the involvement of many wonderful people out there that care for Autistic children.  I do not want to downplay their role in any way, because God knows we need them! 

I have a friend, who was concerned about another friend, who has a child with Autism.  As I was visiting with my friend the other day, she mentioned a new diet that her friend had put her child on, and a new therapy that they were trying.  She mentioned that it was just the newest of the fad diets and therapies that have been tried on this child.  I am not a nutritionist or therapist by any means, but I do generally know the concept behind most of the regimens that are out there in the Autism community.  There is much talk about ridding the body of toxins, and certain types of foods causing different behavioral reactions in certain children.  I have actually seen autistic children "go a little crazy" after eating certain specific foods.  Of all the beneficial interventions used for autistic children, I think changing their diet would have to be the most difficult.  I have never done this with Katie, so I don't know first hand, but I have spoken with many, many mothers who have literally thrown out the entire contents of their pantry and refrigerator to comply with the structure of certain diets.  I will never forget the classmate of Katie who had to pack his lunchbox for a field trip to the restaurant, because his mother would not be there to ensure he followed his diet.  That mother would spend hours making his meals at home. 

I am not here to judge, and since every Autistic child is different, every parent has to be different too, but this whole conversation with my friend brought up an interesting, sensitive, and debatable topic.  How do you know which therapy or diet is right for your child, and when does it get to be too much?  How do you decide that enough is enough, and when do you realize that you are grasping at straws?  At what point are you limiting your child with the intention of helping them, only to be actually depriving them of harmless treats?  And how do you measure the effectiveness of these therapies and diets?  The answer to these  questions can only come from the parents themselves, but I have heard so many others question the parents' ideas and methods.  I understand both sides of the coin.  The parents feel that it is their right, and obligation, to do what they feel is best for their child.  I also understand how the "others that love them" can feel frustrated and bewildered by what may seem like far out interventions.

The bottom line is that, as Hillary Clinton once said, "It takes a village to raise a child".  If everyone who loves that child is keeping the child's best interest at heart, that is all that matters.  Keeping that in mind, the outsiders have to trust in the parents judgement, and also follow their guidelines for raising their child.  Do not sneak them food off the forbidden list, don't keep them up way past their bedtime or engage in any kind of activity that might seriously under mind whatever therapy or behavioral modification the parent has chosen for their child.  It might seem strange to you, you may not agree with it, but follow it anyway.  At some point, if you feel comfortable, have a conversation with the parent about what bothers you concerning the diet or therapy.  Offer assistance, but don't judge the parent, and don't gossip about them.  They have a hard enough time as it is.  And parents, really look into and research whatever methods you are choosing to use with your children.  Just because a celebrity is promoting something, does not mean it will work for you.  Each Autistic child is very, very different from the others.  Talk to your child's doctor or therapist before trying something new.  Find out if will even be reasonable for your child.  Don't jump from diet to diet, from therapy to therapy, trying to "cure" your child or create some kind of miracle transformation.  There are many wonderful methods and therapies and interventions and dietary modifications that may work wonders if done properly.  But not every one will be right for you.  Find what works the best and stick with it.  Sometimes, in our Adventures in Autism, we must not forget to love the child that we have, instead of just waiting for the child we want them to be. 

Dream A Little Dream

Katie told me that she had a good dream last night, and it got me thinking.  I wonder how the dreams of those with Autism are different than our dreams?  I have very vivid dreams on a regular basis that I can recall in great detail for a long time.  Sometimes they are so lifelike that I have a hard time seperating what is real from what was in my imagination.  I am sure everyone has a different style of dreaming.  My husband says that he never dreams.  But since autistim affects the brain activity and thought process, I really wonder what that does to their imagination.

I know Katie has a very active imagination.  She creates scenes and scenerios in her head on an hourly basis, holding entire conversations with herself (or as she says, "my friends").  She argues and laughs and even gets in fights sometimes, with herself.  So I can only imagine what her subconscience comes up with when she is fast asleep.  That raises the question, does she even have a conscience or a subconscience?  She knows right from wrong, but doesn't seem to think too much about the consequences of her actions.  That would indicate to me that she does have a conscience, but it is not very developed.  She does try to be a good person, but sometimes cannot stop herself from acting up, even if it is pointed out to her that what she is doing is wrong in some way. 

Katie loves to plan for the future.  It is usually just planning the next party or what we are having for dinner, but sometimes she goes as far as planning what she wants to be when she grows up (a worker at Disney), or where she wants to live (at home, forever).  I don't know if I would consider that "dreaming" as much as I would see it as just looking ahead.  Dreaming in an awake sense would mean she was picturing herself as achieving a goal, or fullfilling some fantasy.  Dreaming in an asleep sense would be like watching a movie that you are starring in.  Which does she do?   Does she dream it all, or does she dream entirely differently than anything we could imagine?  When I asked her about her dream, her description did not allow me any clues to these questions.  She just said that she was swimming with her friends, and the next night she said her dream picked up from where it had left off the night before.  That is really hard to tell if she is just remembering a fun event that she had experienced, or actually dreaming it. 

There is really no good reason why I want to know about her dreams.  It won't help me or her in any way if I uncover the secrets to her dreaming.  I am just very curious about what goes on in that head of hers.  She fancinates me and perplexes me and frustrates me and amazes me all at the same time.  I would love to think that she can have wonderful fantasies of whatever her heart desires.  It would be interesting to know what moves her, what drives her, what inspires her and perplexes her.  I know more about her fears than about her motivations.  It is easy to see what limits her, but I would love to tap in to what makes her soar.  I would love to, just for a moment, dream up an Adventure in Autism together.

Splishing and Splashing

Sometimes it is not just enough to accomplish a goal.  Sometimes the bigger battle is to overcome the goal all together.  If you are afraid of something, do you feel relief by just facing that fear one time?  Or does success come from facing it over and over, and gradually accepting it?  If you are afraid of heights, and climb the ladder one time just to say you did it, do you feel as if you are not afraid of heights any more?  Do you feel like you have met that challenge once and for all?  Or do you need to climb the ladder over and over?

I think having Autism must be like having to face your worse fears on a daily basis.  And sometimes I think it is like facing them and being pressured to do so by the people they love and trust the most.  Parents, teachers, siblings, friends.  "Come on, you can do it!" "What are you afraid of?" "Just do it one time, you will see!"  I have heard this, and said this myself, many times.  But when I stop and think about it, how trusting would I be?  If I imagine myself to be Autistic, and my whole world is a mess of overstimulation, and my brain is going a mile a minute, and my worst fear is standing in front of me, how would I react?  Personally, one of my worst fears is claustrophobia.  Crowded elevators are the worst, but any crowds do me in.  If I try to imagine a scenerio that I could relate to, I supposed it would be when I am the most tired, waking up after working the midnight shift and going outside in the bright sunshine, and have my kids all talk to me at once.  That is the most overstimulated that I have ever felt.  Now if I imagine all that happening while being in a crowd, I might begin to come close to what Katie feels on an every day basis.  How ready would I be to dive right in, just because someone I love is standing there, encouraging me?

Katie's friend does not like to go down her water slide into her pool.  She loves to swim, but prefers to stay in the shallow end.  In the past, she has gone down the slide after much encouragement, while wearing a life vest or swim rings.  A few weeks ago, she finally attempted to go without any vest or rings on.  Her mom almost started crying because she was so excited.  We whooped and hollered and high fived her.  She was so proud of herself!  But the next time we went over, she refused to do it again.  Her mom was so disappointed, and tried everything to get her down that slide.  They got into quite a dispute about it, and I felt so bad for the mother.  She had her heart set on her daughter going down that slide again.  She felt that if she had done it one time, she must be okay with doing it over and over.  I can totally see why she would feel that.  Wouldn't the girl have realized that since she made it safely once, and she enjoyed it that time, the following attempts would be just as safe and fun?  We felt so helpless watching them go back and forth.  I knew exactly how the mother was feeling.  Sometimes we wish we could just do the task for them, or with them, so that they can see and feel the success, and the relief from the fear. 

There is no way to explain what is going on in the mind of someone with Autism.  There is no rationalization for their thoughts or their actions.  Sometimes we can predict what they will do, based on past experience, but that is not always a definate by any means.  What drives their desires?  What halts their fears?  The best that I have been able to do it to map what sets Katie's meltdowns off, and try to avoid those type of situations.  For Katie it is hunger and being tired and dogs.  When she was younger it was very loud noises.  For others it might be touching something or certain sounds, being in certain situations.  But these things can also change as the children grow.  Some fears remain, some are overcome, and then they can develop new fears along the way.  The biggest thing that I have learned in dealing with Katie and her fears is that there is not a reasonable rationalization that you can talk with her about.  You cannot EXPLAIN to her why her fear is what we might consider "unreasonable".  You cannot EXPLAIN to her that she cannot eat lunch now, even though it is "lunchtime" because she just slept in and ate breakfast an hour ago.  You cannot EXPLAIN to her that the very cute, tiny dog that weighs only 4 pounds is not a threat to her in any way.

When I try to put myself in someone else's shoes, it can really help me learn more about myself, and help me learn how better to interact with Katie.  If I put myself in the other mother's shoes, I can see how different each child with Autism really is.  What their strengths are, might be my daughters greatest weakness.  I can also see the similarities between the girls, and learn from how others handle their Autistic children.  If I put myself in Katie's shoes, I can see that I need to back off and give her some space.  I have to stop and look at how she is feeling at each moment, and how my simple request might be extremely difficult for her.  I have to stop and look at who am I doing this for?  Who is benefitting from these things that I ask her to do?  Am I doing more harm than good?   That is not to say that I need to let her "run the show" and never step out of her comfort zone, but maybe stop and look at the bigger picture and reevaluate how important things really are.  My Adventures in Autism are never in black and white, never cut and dried.  They are in rainbow techinicolor with fireworks and cannonballs.  Sometimes they are overwhelming, but aren't rainbows also beautiful?

A Bicycle Built For Two

We are into week #2 of the longest summer ever, and I am not sure I will be in my right mind for much longer.  Our main problem thus far has been that my oldest daughter is so busy with her summer sports, and I have to drag Katie all over for them.  Who wants to go sit in the heat outside when home has air conditioning, a pool, and a cupboard full of snacks?  We have been struggling through it, making the most out of the situation, when we ran into another problem.  My oldest daughter is so tired from all of her sports, that she doesn't want to participate in our family outings.  She wants to sleep in all day (like a typical teenager), and this has been a source of discontent in the family.  A teen being crabby and being forced to spend time with her sisters makes for a lot of "disagreements", most of which are very vocal.  Katie does not like people fighting, anyone, for any reason.  Especially not her family, and especially not when her sisters are getting in trouble.  When she senses an argument, she will start crying, and pleading for everyone to calm down, and really carry on.  And once Katie gets going with the tears, there is no stopping her.  The best idea would be for everyone to stop the argument, but it is like throwing gas on a fire.  The fight continues, Katie continues, and the day is basically ruined.

After a hurricane like that happened yesterday, Katie told me in tears that she wanted to go for a bike ride.  Now, Katie has very poor control over her big muscles.  To sum it up, she has really bad balance and coordination.  Not a great combination for bike riding, right?  So, 2 years ago, my parents bought Katie a "half-bike" that  attaches right to the back of my bike.  She actually pedals, and has handle bars, but I steer (and do most of the leg work).  She absolutely loves her bike, and we have been out quite a few times this year already, mostly just around the block.  It is a nice way for her to get some exercise, and consistent exercise at that.  She can't loose interest half way through and give up!

Once we got home from our disastrous family outing, I promised her that we would go out on our bike.  She didn't want anyone else to tag along (and thankfully no one wanted to go).  So off we went, on a much longer route this time.  From the moment we left the house, she started talking my ear off, and then she started singing!  She sang, and sang and sang the whole entire 30 minute ride.  I have to admit that she was singing the "Over hill, over dale" song from the military (that was also sung by Disney characters), and she sang the SAME song the whole time.  She was as happy as she could be, laughing and singing.  I didn't have breath to spare, but she didn't miss a note.  When we got home, she said to me, "This was the best day ever!"  Are you kidding me?  She spent roughly an hour in a fit of hysteria, only to proclaim the day fantastic because of a bike ride.  I am not one to look a gift horse in the mouth, however, and will just try to remember the calming effects of a bike ride next time she gets herself upset over something.

As a parent of an autistic child, this is what every day is like. Ups, downs, sideways, never standing still, never knowing what the next moment might bring, the next hour, the next second.  Never relaxing when things are going well, because you have to anticipate the next downward spiral.  Always looking for a way out of the storm, but not the easy way out.  Because the easy way out might mean that you are caving in, and you can never cave to autism.  Autism will rule you if you cave.  Always remembering what seems to help, and trying it again the next time.  Sometimes it will work again, sometimes it won't.  Sometimes there are so many factors at play that nothing will help.  Because it is not just autism I am battling.  It's autism and sibling rivalry, hunger, exhaustion, over stimulation, boredom, fear, hormones, anxiety and pain.  And so many other things, sometimes things I am not even aware of.  Things that Katie can't describe, is not even aware of herself. 

I enjoy our little bike rides.  I enjoy the one on one time that I get with Katie.  I love hearing her talk and sing.  I love her being outside in nature, exercising, being a kid.  I love that she loves her "half-bike" and I love that my parents gave it to her.  I love that people in our neighborhood see us riding around town.  Not everyone knows us, but I can only imagine what they are thinking when they see a grown kid, who is almost as tall as me, riding on a bike attached to her mother.  I hope I get the chance to talk to them someday, because I love to educate people about autism and Katie.  I love that my in-laws live only a few blocks away and we can bike over there for a visit.  I love that our Adventures in Autism sometimes lands us on a bicycle built for two. 

It's Going To Be A Long Summer

We are only a few days into summer vacation, and I am out of my mind already.  I know quite a few parents out there are of one mind in dreading the summer break, for many different reasons.  The kids get bored, they get whiny, all they want to do is lie around the house.  They are too hot, they don't want to wake up for anything, they miss their friends.  There is nothing to do, there is nothing to eat, no one is home to hang out with.  There is nothing on TV, they don't want to go outside, there are too many bugs.  Sound familiar?  Well, I am dealing with that, times 3, plus a good dose of Autism mixed in.  Shake it all up, and it is going to make for one loooong summer!

How does Autism affect summertime fun?  For one thing, Katie has a hard time entertaining herself.  If she goes to play outside, she only ends up walking back and forth talking to herself.  Unless there is someone else there to engage her, outside is not her thing.  We have a pool, which she loves to swim in, but I won't let her swim without a parent there, so if I want her outside, I basically have to be with her.  Rememer in the old days when we would go outside to play and be there all day?   Only coming inside for Kool Aid and dinner time and when the street lights came on?  That is not an option for Katie. 

A long time ago, Katie used to go to summer school.  She became "overqualified" for that, so I sent her to the local parks and recreation program.  She loved that, and went for several years.  Then she became too old for parks and rec.  Now what am I going to do with her?  I don't want her to sit around watching TV all summer.  I have a few play dates lined up, and at night we will be busy with sports,  but I am looking at a whole summer with her following me around, wanting to plan parties and talking my ear off and wanting to eat Doritos.  That is going to get old, fast.

So far, in the few short summer days that we have had, she has.....eaten a cupcake wrapper, dropped an entire roll of toilet paper in the toilet, cried at a birthday party, been covered in ketchup at a golf outing, rearranged her sisters make-up (not in a good way), decided to do all the laundry without me knowing, freaked out at a softball tournament, and un-invited her sisters to the family Tigers game.  I am hoping that she is not going to gain a bunch of weight this summer, because she has also been eating constantly.  She already planned at least 5 parties, told all her "pretend friends" that I am not fair to her, and still can't figure out how to not put her bathing suit on backwards. 

I know that we will get through this summer, just like we get through everything else.  I am just not sure what I will be like on the other side of August.  The best idea I can come up with is to plan a bunch of stuff, a bunch of outings and get togethers, parties and picnics.  We have a few books that we are going to read together, and plans to ride bikes and swim.  I just don't see me personally getting anything done this summer.  I won't be able to go to the movies with my girlfriends, or stroll through the art fairs or shop leisurely at the mall.   I guess this summer, I will have to put some effort into making our Adventures in Autism as exciting as I can.

Leaving Her Behind

I know you haven't heard from me in awhile.  Every May, my husband and I take a little trip, a mini-vacation, to Las Vegas.  We go to celebrate our anniversary, to relax and reconnect.  We have gone almost every year that we have been married.  We usually go by ourselves, but we occasionally have family that will go as well.  That might sound extravagant to you, but it is vital, almost necessary, for the two of us.  My husband works very hard at his job, and so do I.  We work opposite shifts and opposite days.  Our "free time" is spent attending sporting events, church activities, and running our kids all over town.  We really don't have the opportunity to spend quality time with each other.  That is where Vegas comes in.  We decided to make it a point to get away, to escape from our crazy lives, if only for a few days.

When Katie was little, we used to try and sneak out the door when we were leaving for Vegas.  We would bring her over to my parents house (my parents always watch our kids when we go on vacation), and drop off the kids supplies, try to distract them, and ease outside.  More often than not, Katie would catch on, and be at the door crying as we pulled away.  Not the best way, or most relaxing way, to start a vacation.  I would spend the entire time worrying about her and how she was behaving, and how long she cried for.  Then one year, Katie spied our suitcases out and asked us where we were going.  I was so caught off guard that I told her Daddy and I were going to Vegas.  She asked me, "Who am I staying with?" and I told her grandma and grandpa.  She said, "OK" and never again gave us a hard time.  That was the biggest lesson I ever learned from Katie.  If you tell her the plan, she is more likely to accept it and go along with it.

Leaving behind any children when you are going on vacation is nerve racking.  There are so many things to consider, and to plan for.  So many things to pack, so many scenarios to run through.  When you have a child with a Autism, that list multiplies.  You have to think about their medicine, their feeding schedule, their sleep schedule, their eccentricities, their entertainment, their emotional well being, their propensity to flip out at a moments notice, and their attachment to you.  Fortunately my parents are willing to take it all on, along with my other two daughters, and make an adventure out of it.  But I still have to over plan and map it all out, have multiple discussions with them about the plans for while we are gone.  What seems like a normal, well-adjusted kid can turn into a nightmare when she is hungry or tired, or if her sisters are picking on her. 

I called my oldest daughter my first night on vacation, and she felt the need to tell me that Katie had not slept the night before.  I later found out that this was a huge exaggeration, as she had been up late, but did sleep.  Not knowing the truth, I myself had a minor meltdown, in Vegas, thinking that Katie was going to be overstimulated and a mess without any sleep.  I was envisioning major temper tantrums, chaos of all kinds, while I was on the other side of the country unable to do anything about it.  My husband calmed me down, and reassured me that my parents were not only capable of handling Katie, but they enjoyed doing it and that everyone would be fine.  I know this, I know this, I know this, but the rational mind and the emotional mother do not always walk hand in hand.  The next time I talked to my daughter, I informed her that I did not want her tattling on her sisters while I was gone, because I was unable to enjoy myself if I was worrying about them.  The bottom line is, my parents are loving, doting grandparents, are fully Katie qualified, and have been for years.  They have seen her at her worst, and they know how to get the best out of her as well.  Nothing is going to happen to her or her sisters while I am gone, that would not happen when we are home.

Leaving Katie is one of the hardest things that I do.  In my heart I want to put her in that bubble, to protect her, and keep her safe next to me.  I also want to protect others, or to not burden them, concerning all the difficulties and baggage that comes with caring for Katie.  But to be the best mom that I can, and to be the best wife that I can, I need to take some time out for me and my husband.  I also need to let Katie form some independence and learn how to manage without us.  It does get easier as she gets older, because I can see how much she enjoys her little vacation over her grandparents.  Grandparents let you eat a lot of ice cream, stay up past your bed time, and run around without your shoes on.  It is nice to let her go be spoiled, nice to nurture the bond she has with my parents.  I have to admit, however, when I go on vacation, I miss my Adventures in Autism. 

Just One of the Girls

It was another softball Saturday, and I was dreading taking Katie to the ball field.  Although it was a beautiful May day, the weather was going to be hot and sunny, and we were scheduled to be outside watching softball from early morning until late evening.  I went ahead and packed the snacks, the sun shade, plenty of water, the I Pod and several pizza pamplets for Katie to read, but I knew it was going to be a nightmare for everyone.  Fortunately, my mother-in-law offered to hang out with Katie for most of the day, so she only had to sit through one game.  But the next morning we had 2 more games, and the weather was just as hot and sunny.  We repacked the car and hoped for the best.  When we got to the ball field, however, Katie was very excited to see one of her friends from school!  Her older sister plays on my oldest daughters team, so she was there to watch her.

I never know what to expect when a "friend" of Katie's is around.  Are they actually her friend, or does she just label them as such?  Are they merely a classmate who doesn't know too much about her?  Are they familiar with her quirks and her difficulties?  Are they going to be nice to her, or make fun of her when no one is around?  I try to get a feel for their personality before I let Katie go off and hang out with them.  Will they feel comfortable with her, or is she going to be "bothering" them.  If she does something off the wall, how are they going to react?  Whenever Katie is around other kids, I usually hover like a hawk, waiting to swoop in and save the situation, or explain Katie to them, or something.  I want other kids to like her and want to hang around with her, and usually the more information you give people, the more they understand and accept her.  For example, if you tell people, very casually, that Katie is talking to her "pretend friends", and work it into the conversation that she is autistic, they will hopefully not feel uncomfortable around her, or wonder what she is doing, and who she is talking to.  I have no problem striking up  a conversation to explain her actions when we are out in public, if people are around and she is doing something goofy.

So here we were, at the ball field, with her "friend" from school.  I approached the friend's mom and introduced myself.  The mom knew all about Katie, from her daughter talking about her from school.  Katie is in a class with her, and the girl helps Katie out at school.  According to the mother, this girl is very fond of Katie.  So Katie tagged along, to what had now become a "softball sisters" group, and they hung out on a beach blanket, talking and eating snacks.  Later on they went to the park, now with my youngest daughter in tow.  I tried not to hover, not to circle around and interrupt their teen time, but I was so curious as to what kind of conversation they could be having.  I only know Katie as my daughter, so I don't know how other kids view her as a friend.  How they perceive her or what they think about her.  I am always surprised as to how gracious other kids are with her.  How accepting they are, without even knowing that they are being so generous.  I wish I could clone these kids and make a million more, because having real friends is the absolute best thing for Katie.  She did not whine once, or ask for snacks or drinks, or complain she was hot the whole time that she was with them.  She almost becomes a different kid herself, more mature, more in control of herself in so many ways.

Every time I think I have Katie's future all figured out, all planned out and pictured in my head, I am once again reminded that I better forget it.  Each passing year she surprises me with how far she progresses.  Not only academically, but socially and emotionally as well.  Two years ago she was in an all autistic classroom, mainstreamed for a few hours each day with no real friends.  Now she is in a regular middle school, going to most of her classes with the general population, going to dances and sleepovers and getting phone calls from friends, going to be a member of the student council and honor society.  What's next?  I can't even begin to imagine.  Things that I never thought possible have been accomplished, so the sky is now the limit for her.  When I watched her sitting with these friends, she was just one of the girls, laughing and talking.  Sometimes our Adventures in Autism have nothing to do with Autism.  Sometimes the adventures are just simple things, normal things, like hanging with friends.

Moving On Up

I have made many different friends over the years, simply based on the fact that we have Autism in common, in some form or another.  Many of these friends have Autistic children themselves, and the common issues have brought us together, learning from each other and leaning on one another.  Some of these friends have younger children, but those with older children I have gone to many times for advice.  I use them as my measuring stick, to see how well Katie is progressing, or use them as my glimpse into the future.  The Autism community has been very generous to me when I have needed it.  Knowing other mothers who have already gone through your worst nightmares, and have lived to see the other side, can be really beneficial. 

One of the mothers that I have met and befriended has a 19 year old Autistic daughter.  I met this friend when Katie was real young, and have always been inspired by her.  I have asked her endless questions about what to expect, but especially about issues specific to teenage girls with Autism.  I think the statistics say that there are 4 times as many Autistic males as there are females, so finding other girls we can talk to is a big help.  There are many "female" issues to worry about, that I won't even get into, but it makes a world of difference to be able to have someone to go to that has already been there and lived to tell the tale. 

I ran into this friend today, and she informed me that her daughter was moving out.  Her and her husband bought their daughter a house, about 10 minutes away from them.  They found 2 roommates to share living expenses, and hired an agency that will have 2 caregivers that stay with them 24 hours a day at the house.  Wow!  I was floored when she told me this.  I still don't know what to think or how to feel.  I don't mean how I feel about HER daughter moving out, but about how I would feel if that were Katie in 7 years.  I asked her if she was scared, and she didn't really say yes, but she didn't really say no either.  She said she still can't belive it is going to happen, and it won't feel real until her daughter actually leaves.  I have been thinking about this all day. 

I have always assumed, and so has my husband, that Katie will live with us forever.  That is a silly thing to worry about when your child has yet to reach their teens, but I am always one to look ahead and worry about what won't happen for a long time.  So many things can change between now and when Katie graduates high school.  She is going to grow and mature and change so much, that it is impossible to nail down what we will do then.  Just looking back to last year, Katie is a completely different person since then, that I can only imagine the possibilites that she will reach.  But we have always talked about her living with us, remodeling her and her sisters shared bedroom into some kind of suite, always being around.  It wasn't a good thing or a bad thing, it was just the way it was going to be.  We have talked about the 3 of us; me, my husband and Katie, going on vacations and out to dinner, visiting the other 2 girls wherever they may move to.  Katie even said that she was going to be "Aunt Katie" and take her nieces and nephews out to dinner when they came to visit, or babysit them and spoil them rotten. 

I can't even wrap my head around the idea of Katie ever moving out.  I am not saying that it will never happen, I have learned to never say never.  I just can't imagine ever feeling comfortable enough to let her live on her own, even if it was with a caregiver and roommates.  Of course, she is not 19 years old yet, and she has a lot of living to do between now and then.  I think my friend is very brave to let her daugher take this step.  Her daughter will be able to grow as a person, learn independance, and have an adult life that I assume would not be possible if she lived at home.  These are all things that normal young adults work towards, but are not always attainable for those with Autism.  But as a parent, sometimes the steps towards independance can be scarier for us than it is for our children.  It would be much easier to keep them in a bubble, under our wing, protected and sheltered.  Keep them safe and happy, unchallenged by lifes craziness, unburdened from bills and chores and social fiascos.  But that is not letting them live big, and to me it is just as important to let Katie live her life as big as she can.  Sometimes I have to realize as a parent that my Adventures in Autism are not about what I make them, or what is easiest or most comfortable for me, but about what is best for Katie, and what is going to help her become the best Katie she can be.

Mothers Day Madness

I am a soccer mom, a volleyball mom, a bowling mom, a basketball mom. I am a softball mom, a cheer mom, a catechism mom, a working mom, and a stay-at-home mom (I can be both, right?).  I am a teenager's mom, a daughter's mom, and an Autism mom.  Each of these roles have helped shape me into the mother I am today.  Each has their own challenges, their own joys, their own heartbreaks and their own successes.  I never knew, before I had children, that there were different types of mothers.  I never knew that I could be several different types all at once.  I thought that you had your children, and then taught them all about life.  I never dreamed that it was the other way around.

I was in my early 20's when I started having children.  I married young, graduated college, and started out my "adult life" when most of my high school friends were still bar hopping.  My first daughter came along, and taught me that I had NO idea what I was doing.  Every pre-conceived notion of parenting went right out the window.  The only constant in my life was the fear of her growing up too quickly.  Then came Katie.  Parenthood was much easier the second time around.  I knew that I wouldn't break her, I knew that she wouldn't break me.  I knew that she would survive without me hovering over her 24/7.  Before Katie was born, I was so worried that I wouldn't be able to love her as much as I did my first daughter.  When you have your first child, you are so overwhelmed with this love, this all-emcompassing passion for your child.  How can that ever be duplicated?  They take up your whole heart, how can you possibly have room for another?  But when Katie came, I immediately grew a new heart that belonged all to her. 

As I raised my two young daughters, I learned as I was going along.  Make a schedule, follow the schedule, love them to pieces, kiss their boo-boos.  Pretty simple.  Lay them down for a nap, pack extra snacks, always buy two of their favorite toy in case one gets lost or broken.  We decided to have another child, add to our loving family.  Make room for one more, because this next one I know I can love without taking away from the other children's pieces of my heart.  Then, when I was a few months into expecting my third child, we started noticing that Katie wasn't acting like other children.  She wasn't talking, she wasn't making much eye contact.  She wouldn't respond if you tried to get her attention. She seemed to be off in a world of her own at times, not playing with her cousins who were her age.  I tried not to compare her to other children, because each child is different, especially in infancy.  But something didn't feel right, just didn't add up.  And that is when my motherhood took a hit.

Doctors, specialists, speech therapists, audiologists, neurologists, social workers, occupational therapists, physical therapists.  Motherhood for me would never be the same.  Now I was thrown into a sea of diagnosis and terminology and consultations and recommendations and interventions and perscriptions and a million other things that I might of heard of, but didn't necessarily understand.  I had to step up and create a new me, a new mother that was strong for her small helpless child.  A mother that knew which questions to ask, and knew exactly what was wrong, knew when the doctors were full of crap, and when trusting them was our only option.  I had to learn to cry behind the closed door, pray for many miracles, and call on others to help, even when I thought I could do it all on my own.  I had to learn to be aggressive, insistant, and inquizative.   I had to remember to write everything down, because who can remember all of this?  I had to learn that sometimes "Mom" ends up looking like the bad guy, when you have to physically hold down your child for a test or medication.  I also had to learn to let go of any sort of reality that I thought I had created with my family of 5, and embrace the reality before me.

As Mother's Day approaches, I look back on how far we have come.  I say "we" because I have grown right along with Katie.  She has blossomed into a beautiful, intelligent pre-teen, who has far surpassed any kind of expectations that I created for her after I heard the word "Autism".  She is happy and friendly, involved with her church, school and community, talks to friends on the phone and goes on overnight adventures.  She knows more about computers than I do, and has no social anxiety whatsoever.  In short, she has literally blown me away. 

I have come a long way myself.  I have learned volumes about Autism.  I have learned how to talk with a doctor without breaking down into tears.  I have learned to ask for specifically what I want for Katie, without feeling guilty.  I have learned that sometimes people in the world can be very insensitive, but that does not change who I am or who Katie is.  Their ignorance takes nothing away from her success.  I have learned that people say really stupid things, and I might take offense to them, but I also have to realize sometimes their comments have nothing to do with Katie or Autism, even if I connect all the pieces together in my head.  I have learned to be patient with people, which is the hardest lesson by far.  I have learned to ask for help when I need it, and accept help even when I don't think it is necessary.  I have learned that people really love Katie, and want the best for her.  I have learned to let the Mama Bear in me loose when she needs to go defend my cubs, and when she needs to calm down and take a deep breath. 

I have also learned how to make Autism work in a busy family, so we are living our lives as big as we can, without Autism running the show.  Making sure my oldest daughter knows how proud I am of the way she represents the family.  How much joy it brings me to see her care for Katie, even in the little ways she interacts with her.  Making sure my youngest daughter doesn't get lost in the shuffle.  That she has her own life that is important and special.  I have learned to make my husband a priority, so that we do not get lost along the way.  And, on this Mother's Day, I will embrace my 3 beautiful daughters, embrace our Adventures in Autism for all that they have taught me, and be a better mother for it.

And the Honor Goes To....

Sometimes having a child with Autism isn't all bad.  Sometimes it can make you burst with pride, and want to shout from the mountain tops.  Katie brought home a letter from her middle school, announcing that she has been accepted into the National Junior Honor Society.  About a month ago, she had received a letter explaining that her gradepoint made her eligible for consideration.  But the Honor Society is about more than just grades, so she had to fill out an application form and write 2 different essays.  They also look at activities that you belong to in school and in the community, and also service projects that you have been a part of.  Katie was very dedicated to completing this form, and worked really hard on the essays as well.  After turning in her paperwork, the waiting game began.  Then, a few weeks later, it was official.  She will be inducted at the end of May in a ceremony at her school.

My oldest daughter is very intelligent.  She was also accepted into the Honor Society, and has been active in the organization ever since.  But, without taking anything away from her, or any other child in the Honor Society, it is a completely different feeling for me to see Katie be accepted by this group.  To sit back and remember that Katie didn't even talk until she was almost 5, to think that she used to have to ride a bus for almost an hour to go to a special school for autism, and now look at her.  Not only is she back in our home school district, but to excel in her studies on top of all that.  I understand that her work is modified for her.  I understand that she has some limitations in certain areas.  But she is applying herself to the tasks given to her, and working hard to do her very best.  She has her challenges that she struggles with, but she also has areas where she can really shine. 

I have always found with Katie that any milestone she reaches is always a rollercoaster ride for me.  I am naturally a sentimental person, I cry at preschool graduations and dances, first days of school and 5th grade camp.  Milestones are bittersweet.  They not only signify a big step in a lifetime, but they also show how far a child has come.  For Katie somehow they also magnify how different she is than other children her age.  I don't let her know how I am feeling inside, but sometimes I really struggle with important events.  Sometimes I fall into the trap of thinking "how would life be different" if Katie didn't have Autism.  But, like I have said before (and blogged before), if Katie wasn't Autistic, she wouldn't be Katie, and I wouldn't be me.

This milestone of Katie being in the Honor Society is different than other steps she has taken.  This, for me, is all happy.  It is all good.  It is all proud.  There is nothing about this event that makes me sad, or makes me gloomy or causes me to ponder life.  I think it is because I honestly never even thought about her being in the Honor Society.  I don't mean I didn't think she would make it if she applied, it just never even crossed my mind.  I wasn't anxiously awaiting the letter in the mail, or sweating it out to see if she was eligible.  In this case, I guess ignorance was bliss. 

If you take a good look at the application, Katie is perfect for the Honor Society.  Aside from her honor role grades, she is very active in her community.  We actually ran out of room on the application when we were listing her service project activities.  My parents are extremely involved with their Kiwanis club, and always take my kids on their projects.  This means Katie and her sisters spend alot of time helping others.  They ring the Salvation Army bell at Christmas, deliver food and clothes to the local shelters, pack up meals for Kids Against Hunger, and help with the Easter Egg hunt.  My parents have instilled in my children the love of helping others and serving them.  Another requirement Katie had to fullfill was activities.  She has always been involved with the local Autism group, doing bowling and soccer.  She also was a cheerleader for our church, helped out at Bible school, and was a school safety.

When we completed Katie's application, it really made me pause.  Here is this child, burdened with a lifelong disablity, but not letting it hold her back for one minute.  She is not sitting at home, lost in her own world.  She is out there, living life, making friends, helping others and blowing everyone away by her charm and her smile.  Living life does not come easily to her.  School and rules and socialization and fun and common sense are not automatic for her.  Sometimes I wonder if the sky is the limit for her.  Not only because she wants to live her life to the fullest, but also because she doesn't think of herself as having limitations.  So why should I?  Why should I think she has limitations and difficulties and trials and tribulations if she doesn't see that in herself? 

I honestly hope that Katie being inductied into the Honor Society does not make some parents mad.  I hope that they don't think, "My kid is smarter than her", or "Her work is modified" or "They just let her in to be nice and she doesn't deserve it".  The Honor Society is about more than good grades, which by the way, she does get.  It is about integrity and character and service and involvement, all qualities that Katie has.  I hope they also realize that it is not a competition.  Just because Katie got in, does not mean that she took a different child's spot.   I know I don't have to justify this to anyone, but I felt that it needed to be said.  Because sometimes, in our Adventures in Autism, some people don't understand just how far that Katie has traveled.  How hard that she has worked.  How much she has struggled.  I am so proud of her!

Good Girls Gone Bad

Katie got off the bus the other day with her head hanging down.  That is never a good sign.  Usually it means that she lost something, or got her clothes dirty, or forgot her spelling words in her desk at school.  She even came home looking guilty one time because a classmate had gotten into trouble.  This time it was more serious.  My good girl has gone bad.

"Mom, I got detention," she told me with tears in her eyes.  I won't go into details about the how and why, but let's just say she was into someone else's business.  Nosing around where she shouldn't of been.  Now, frequent readers of my blog know that this is a common problem that occurs around my house.  Katie is constantly in my business, looking through my calendar, reading my emails, searching my text messages.  She is always rooting through her sisters cabinets and drawers, closets and dressers, making them all crazy in the process.  My youngest daughter has threatened to put a lock on her bedroom (which would not work out too well, because she shares a room with Katie).  I am sure they feel as violated as I do, although they make more of a fuss over it.  No one in our house has any privacy with Katie around. 

She also has a habit of listening in on conversations, "evesdropping" around corners, and drawing her own conclusions from what she hears.  She will often fly off the handle, hysterical, over what she thinks is going on, when she couldn't be farther from the truth.  Any time she overhears that someone is in the hospital, or going to the doctor, she screams, "They died!"  Although I shouldn't have to explain myself to her, sometimes I have to tell her what is going on, just to calm her down.  If she hears someone fighting, that means to her they are getting divorced.  If I am complaining about someone, she thinks I hate them.  The whole process of dealing with her overexaggerating everything can be exhausting to say the least.  Not to mention that she repeats bits of conversations that she hears when it is inappropriate.  A few years ago her teachers learned that when they were gossiping about someone, they shouldn't do it in front of Katie.  She might not look like she is paying attention, but she is. 

The funniest part of all of this is that she is very up front and honest about it.  I don't believe that she is deliberate in her snooping and evesdropping.  I think she is just curious, observant, and has a hard time controlling the impulses that drive her to do these things.  I am not saying she is an innocent angel, I am just saying that I don't think she is sneaky or devious about it.  She will be the first to admit what she has done, and she will also tell on herself.  "Mom, I saw in your calendar that we are going out to eat!" Or, "Grandma says we are all going on vacation together!" 

My husband was very worried that having a detention would freak Katie out.  He thought she would cry and carry on, and blow the whole thing out of proportion.  Amazingly enough, she handled it very well.  We talked about what she did wrong, and why it was wrong.  We talked about why it deserved a detention, and what to expect during the detention.  I gave her a punishment for doing something wrong, and she tried to weasel out of it and make her own punishment.  Then we talked about why she had to stick to that, and not talk her way out of it.  It was so hard for me to make her go through with it all.  It would have been much easier on all of us to just have her say, "I am sorry", do her time at school, and be done with it.  But I knew if I did that, she would never learn the consequences of her actions.  She would always think that a punishment could be talked out of if you cried hard enough.  And my other daughters would see the whole thing and think that Katie gets away with everything.  That is not a good example for them.  I have tried to raise Katie just as I have raised them, and I can't change that now. 

So my good girl did her time.  It was only a lunch detention, but she served it, and I think she actually enjoyed it.  I think it made her feel a little grown up, especially when I told her that I had detention when I was in middle school too.  It showed her that sometimes good people make mistakes too, but just because you are a good person, that doesn't mean that you don't have to take account for your actions.  And just because you get in trouble and make mistakes, it doesn't turn a good person into a bad person.  We all make mistakes.  We all have to pay the price for them.  Then we can move forward in our lives, and hopefully learn something from the situation.  Sometimes our Adventures in Autism gets us in trouble, but down the road, it can make for an interesting story, a funny anecdote, and some street cred.

Instruction Manual

Don't you wish kids came with an instruction manual?  A reasonable instruction manual, that had clear, colorful pictures, and was easy to follow.  Step by step instructions, a "trouble-shooter" guide, maybe an index and glossary.  Don't you wish there was a 24 hour help line to call?  I mean, besides calling your mother or the doctor a million times.  I really wish there was an Autism Help Line.  I wish there was a friendly mother-type who was manning the phones, that could answer any question that I might have, and solve any little problem that might come up.  Answer the questions without making me feel stupid, or selfish, or uncaring.  I wish I had that 10 years ago when Katie was first diagnosed with Autism.  Instead, I felt alone, scared, and utterly helpless.  I felt like the weight of the Autism world would crush me, and that I would fail my daughter.

I am not sure how this happens, but over the years I have had many people referred to me for help.  Newly diagnosed autistic children, their parents somehow get my number and call me.  I have spent many hours talking to moms and dads, most of which I had never met (and still never have met).  I have counselled them, given them advice, listened to their stories, and tried my best to assure them that they will make it through.  I do not have a special degree in autism, I have not been formally trained, but since I had been through it myself, since I am living it day to day, caring relatives and friends have sent them to me.  I obviously don't give them any sort of medical advice, I give them the advice that I wish someone had given to me.  I give them the step by step instruction manual that I have never written down, but has served me well.

Step 1:  If you suspect that there is something wrong with your child, sit down with your partner and talk about it.  Talk about your concerns and what specifically is worrying you as soon as you notice it.  Yes, some people overreact, but wouldn't you rather know for sure if something is wrong, than let time go by just because you don't want to "cause a stir" or be labelled as a "crazy parent".  Talk about your concerns with your partner, and see what they have to say.  See if they have noticed things, and write all of this down.  That way, if you have to approach a professional later, you will remember exactly what you need to say.  So many times people have gotten nervous during the doctors visits, and forget everything that was bothering them.  Write it down, talk about it, don't be afraid to ask others who are close to your child for their opinion.  But prepare yourself to hear something that you might not be comfortable with.  If you ask, keep an open mind to what they have to say, and write down their concerns as well.  All this information will help the doctor later on.  There is not a definitive test for autism, most of the diagnosis will be based on observations, so if you have written down what you have seen at home, it will really help in the process later.

Step 2: Start the conversation with your family doctor or pediatrician.  Do this sooner, rather than later.  If your child does have Autism of any type, early intervention will be the best possible help for them.  You do not want to waste a lot of time being embarrassed to ask questions.  If you do not agree with what the doctor says, feel free to go for a second opinion.  During this time, do some research into what autism is.  There are many websites online that have specific descriptions, questionnaires, and resources available.  Look into as much as you can.  If your child does not get an autism diagnosis at this time, keep watching them and observing what made you uncomfortable before, and feel free to keep consulting your doctor on their progress.  Not all children suspected of autism actually have it.  Some have other issues, some are just different children.  Be ok with that.  But keep on top of things. 

Step 3:  If your child is diagnosed with autism, find out what resources are available to you in your area.  If your child is still young, sometimes there are early intervention programs through the school district.  Call your district and find out.  Sometimes districts consolidate their resources and you might have to go to another city.  If your child is school age, you will want to consult with your district about creating an Individual Education Plan for them, which is a meeting that you will go to with your child's teacher, and other staff that will assist your child with their education needs.  These meetings will be held annually, to assess if your child's needs are being met.  These IEP's are basically a legal contract between you and the school system, to say what resources will be provided to your child. 

Step 4:  Keep an open mind to your child's other needs as well, including their mental health needs.  Some children will need to see a specialist in one area or another, possibly a social worker, or psychologist, sometimes a nutritionist or speech therapist.  Hopefully either your family doctor or the school district can help you determine where else you might need to go for assistance.  At some point, some autistic children also are benefited by certain medications for anxiety, depression, compulsive behaviors, and other issues.  As a parent, you might have to make some tough decisions on whether or not you think medication is right for your child.  And keep in mind, their needs will change as they get older.  They might start developing different habits, behaviors, and obsessions as they grow.  What works for a 4 year old may not work for them when they are 14, or 24. 

Step 5: Bring your child into the world as much as you can.  This sounds easier said than done, and it is easier for some than others.  But they belong in the world as much as anyone else, and autism awareness is out there.  Don't be afraid to say to strangers that are staring , "She is having a bad day today, she has autism", while your child is having a tantrum.  I have known crabby old ladies, who have been glaring at me in church, to bless me and my child when I turn to them and tell them she is autistic.  Do you have to do this?  No, but it makes it a lot easier when people are kinder to you. And people are kinder when they are aware, and the only way you can make them aware is by telling them.  Bring your child to the store.  Bring your child to the movies.  Bring your child out to dinner.  Bring them on vacation.  But also find you child activities that are autism friendly.  Find a local organization that has sports or clubs for them.  Then they can laugh and play and grow and be themselves with others like them.

Step 6:  Don't forget about yourself, your partner, or your other children.  Take time for you, carve out some time that is just yours.  Do not wrap your life around this child so completely that you loose yourself, and resent them in turn.  Do the same for your partner.  Take care of each other.  Spend alone time together.  So many people end up divorced over things like this.  Also, make sure that you find some one-on-one time for your other children.  Make sure that they know that they are important, and special.  Let them know that you understand how hard it is to have an autistic sibling, but make sure they also know how special that autistic sibling is.  Teach them all to love each other and help each other and accept each other, but also recognize when they need a break. 

Step 7: Hold your autistic child to the same rules as everyone else.  Bedtime is bedtime.  No means no.  Time outs are time outs.  Chores need to be done.  Manners need to be followed.  If you follow this step from the beginning, it will really benefit everyone later on.  When they get to school, they will understand rules.  When you hold them to the same standards, your other children will be able to see that everyone is loved equally.  Of course your autistic child will need different standards, different guidelines, different consequences.  But if you start from day 1 raising them just as you are your other children, but altering for their understanding and needs, it will be so much easier in the end.  I am not an expert on Autism, I just know what I know from living it day to day.  What works for me and Katie may not work for you.  But take comfort in the fact that you are not alone.  There are many of us living the Adventures in Autism together.