Monday, January 30, 2012

Daddy's Girl

Dads have a special spot in their heart for their little girls.  They have a way of wrapping their daddys around their little fingers from the moment they are born.  Little girls are precious, little girls are their princesses, and dads will do whatever they can to protect their bundles of joy.  Katie and her daddy are no different.  Katie was a happy baby from the first moment she opened her eyes.  She laughed, she smiled, and that was all it took.  Daddy was hers, and always has been.  He is very protective of her, but also loves to tease her and laugh with her, and when he watches her living her life, the pride is evident on his face.

On the other hand, Daddy is Katie's favorite person in the whole world.  She prefers him to anyone.  She wants to sit by him at dinner, wants to ride with him on the Tea Cups at Disney, and when she snuggles up to him on the couch she claims that it is "her spot".  If my husband and I have to go seperate ways, it is always Daddy that Katie chooses to go with, and she wants Daddy to tuck her into bed every night.  She wants Daddy to take her on a bike ride, Daddy to come watch her soccer games, and Daddy to watch her at bowling.

I know alot of mothers would be bothered that their child openly prefers someone over them, even if it is their husband.  They would feel heartbroken or rebuffed by the choices the child is making.  I, on the other hand, feel blessed that my daughter is able to love.  I feel blessed that she is able to be a part of such a special relationship.  I would never want to do anything to harm the bond that the two of them share.  I know that Autism varies far and wide.  I am well aware that my daughter is higher functioning, especially emotionally, than other children with Autism.  It does not make her better than others more affected by the disorder, it is just a fact of how Autism has chosen to occupy her.  There are many ways in which she struggles with Autism, but I am glad that her love is not limited, nor is her capacity to express that love.  She is able to tell her Daddy that she loves him, and she tells me also.  If she decides to tell me that she loves Daddy more, I am only going to be amused that she is able to tease me, rather than sad that I am not her #1 parent. 

I have seen mothers look into their childrens eyes, look and look and look for some sign of recognition, some sign that there is some emotion locked in there.  I have heard children say "I love you", only echoing what their parents are trying to get them to say, without really meaning it or even knowing what love is.  There is no hierarchy when it comes to disabilites.  What is one childs strength, is anothers weakness, and vice versa.  Although my child is able to have friends and love her Daddy, she cannot write her name on a piece of paper that anyone could read.  Another child might be a fantastic artist, but won't be able to look a stranger in the eye and hold a conversation.  They all have their individual struggles, but also their individual triumphs.

I also feel blessed that I have a partner to share in the pain and the pride that we experience each day.  Sometimes a challenge or a disability in a child drives people apart.  In our case, it brought us closer together.  I know many, many single parents that have children with disablities, and I don't know how they do it.  Sometimes it takes every once of my strength to hold myself together until my husband gets home from work, but then i have the luxury of breaking down, because I know he is there to take over.  He is there to pick me up, he is there to fix whatever is broken, he is there to calm us all down at the end of a long day.  He usually breaks the tension by teasing us all to tears, and we forget about why we were so freaked out in the first place. 

The best part about sharing Katie with my husband is when she will do something so incredibly funny, and I will look at him, and he will look at me and we don't have to say a word.  We will just smile at each other, maybe chuckle a little.  She will be dancing in the back of the car, singing at the top of her lungs, and I will catch his eye.  We don't have to say a word, because inside we both know how blessed we are.  We are blessed to have a wonderful daughter who challenges us, surprises us, amazes us.  We are blessed to be sharing her, and we are blessed by her love.  And if, along the path in our Adventures of Autism, if Katie decides that she loves Daddy better, that is just fine by me.

Wednesday, January 18, 2012


>Fearless.....other than a debilitating fear of animals, a perfect word to describe Katie is simply.....fearless. We were driving down the road today, just her and I, and the song "Fearless" came on the radio. Now I love to sing in the car, at the top of my lungs, off-key. My children usually do not love it when I do this however. I think it is funny to embarrass them, and if I know their friends well enough, I will sing and act crazy for the friends too. Teens and pre-teens would rather die than act like a fool, but I have a dance buddy in Katie. We got that van rocking as we were singing along, a perfect duet, Katie clapping her hands and swaying back and forth. Katie doesn't care who sees her or hears her. She dances and sings for the pure pleasure of it. I am sure you all have done it when no one is around. Just picture your favorite song coming on the radio. You are driving fast, windows rolled down, wind blowing through your hair. Doesn't it feel good? Don't you wish you could feel that free all the time?

Imagine living your whole life without worrying about what people might think of the choices you make. Would you have chosen a different job? Would you have talked to that outcast at school? Would you have cried when you lost a game? That is how Katie lives. She follows her heart, and not the crowd. She sees the good in everyone, because that is the only way she knows. Imagine only seeing the good in people. Just imagine how different that would make each choice you encounter every day. Is it a naiive way to operate? Could it get you hurt in the long run? Absolutely, but I think it would take a lot of bitterness out of the world as well. As a mother, I learn as much from my children as they learn from me. I learn the most from Katie, watching her embrace life and embrace friends with a fearlessness I have never had. Have you ever been afraid to talk to someone because you think that they won't remember you? Have you ever been afraid to ask someone if you could sit at their table or play in their game? Katie doesn't even think twice about it, there is no hesitation. She jumps right into every social situation without even testing the waters. She is fearless.

The night before the first day of school. Walking into a middle school dance. Cheering in front of a gymnasium full of people. Fifth grade camp. These are things that scare me to death, that cause me to sweat and loose sleep. These are the things that Katie walks into with anticipation and energetically embraces. I am legendary for my worrying over situations that work out to be fine. I have almost made myself sick thinking and fretting, especially when Katie is entering into a new step of her life. And my husband laughs at me because as I am crying, Katie marches off, smile on her face, laughter in the air, capturing the moment and running with it. Fearless. He isn't laughing at me to make fun of me, he knows I can't help the way I am, but he loves that I care so much.

When Katie grows up, she says she wants to be a cooker. At McDonalds. Or she wants to work at Disney. She wants to spoil her nieces and nephews and buy them lots of presents and babysit for them. She wants to build a bedroom suite with a bathroom built in and a balcony. She never wants to leave home, she never wants to drive, but she does want a convertible. She doesn't want to go to her sisters weddings, but does want to go to their wedding parties, as long as there is no kissing. Katie is not afraid of her future. I am terrified. Katie is planning her future like it is the game of Life. She sometimes changes her mind a bit, sometimes about where she wants to work, sometimes about how many nieces she wants. She looks to her future like it is hers to mold, in whatever way she wants to shape it. Fearless. I look to her future with so many fears that I couldn't possibly list. What will she do after high school? Will she be able to have a job? Will she still want to live with us? What if she wants to move away from us, how will we handle that? How can I possibly protect her and take care of her when she becomes an adult and wants some independence? I don't want to put her in a bubble, I want her to live a great big life. Sometimes my wishes for her safety and my wishes for her freedom are in contrast to each other.

As much as I try to be like Katie, my job as a mom sometimes holds me back from the total freedom that fearlessness gives you. Katie taught me how to live in the moment, how to sing as if we were the only 2 people around, and how to never pass up the opportunity to talk with anyone at all. As we take more Adventures in Autism, I will have to learn to look forward to the future, and be less afraid of it. I can't wait to see what Katie has to teach me next.

Sunday, January 15, 2012

Baptisms and funerals and weddings, oh my!

As we prepare for the funeral of my grandfather, making travel arrangements, laying out dressy clothes, looking for pictures, there is a whole other set of plans to make. What do we do with Katie? Now I know funerals are not a lot of fun for anyone, especially children, but with Katie, it is a whole different ball game.

Katie understands death, she understands heaven, and she loved my grandfather very much. Katie just cannot handle any big, formal event that involves emotions of any kind. This also includes baptisms and weddings. I know what you are thinking, isnt Katie the party planner? Won't she want to be where all the action is? I really don't understand her fears about these things at all. I know she doesn't like to hear babies cry, so that's why she won't go to baptisms. She also doesn't like to see people kiss, so she won't go to weddings. I suppose the whole concept of people being sad and crying scares her away from the funerals.

As soon as we got the news about my grandfather, she started freaking out. I knew immediately what she was worried about, so I assured her that she wouldn't have to go with us. She would not calm down, however, until we talked to my in-laws to make sure she could stay with them. Problem solved? I wish it was that easy. The whole day she followed me around, obsessing over plans, working herself up into a frenzy. The most difficult part about it was that I couldn't really stop and mourn, because if she saw me break down, she would really start freaking out. So I had to hold it together all day, as I tried to make our plans and arrangements, she trailed after me, questioning me every few minutes.

Katie feels really bad that she isn't going with us. She is very concerned about my mother, and my grandmother, and feels sad for them. She is also worried that everyone is going to be mad at her for not attending the funeral, so I had to reassure her (over and over) that everyone would understand. And I know they will. Everyone in my family and my husbands family are very gracious when it comes to Katie. They all love her very much, and are generous with helping us out with whatever they can.

All our bags are now packed, I have ironed and arranged and prepared and made a million phone calls. Katie has her own bags packed, with her snacks and clothes and toys, all ready to stay the night at her other grandmas house. She will behave herself, I know she will, but I will worry the whole time we are gone. But I know for a fact that I would not be able to properly say goodbye to my grandpa if Katie was there. Sometimes our Adventures in Autism take us in opposite directions.

Sunday, January 8, 2012

Food For Thought

Food, food, food.  I don't think I have met an Autistic child yet that was not to some degree fixated on food.  Fixated, obsessed, that is what Katie is when it comes to food.  I am not sure where exactly the obsession comes from.  Hunger?  Routine?  Comfort?  I think each of these things contribute to her overwhelming concentration on food.  And I mean overwhelming.  If you ask anyone who has spent any time with Katie, they will say her favorite thing to do is eat.

This can cause problems for many different reasons.  The obvious problem would be weight gain, but right now that is the least of my worries.  Katie is not overweight.....yet.  I am worried that as she grows up, she might have a problem with her weight.  I cannot imagine putting her on a diet, or denying her her favorite foods.  Lately what I have been doing is trying to help her make healthy food choices and keeping her active.  The last few years she has been growing like a weed, but I am worried that when she stops growing taller, the weight will start creeping on.  I don't expect her to be "super model" thin, I just know how many health problems being overweight can contribute to, and I just want her to be healthy.  I also don't want her to feel self-conscious or be teased for being heavy.

One of the reasons I mentioned "routine" as being a contributing factor to Katie's eating, is that she is a "clock watcher" when it comes to meals and snacks.  My father-in-law jokes that her stomach has it's own clock, because she knows when it is lunch time, even if she doesn't know what actual time it is.  We have learned to plan in advance for any sort of trips or excursions that we take.  We have to plan around meal and snack times, and pack food as well.  The quickest way to a meltdown is to tell her we are going into a store, when she knows that we should have eaten 15 minutes ago.  There is no reasoning, no rationalizing, and no "making deals" to get her to calm down when the subject of food is being discussed. 

Other than those with Autism, there are many "picky" eaters, especially children, and also many people with mild to severe food allergies, that have to plan their meals wherever they go. Those with allergies, adults as well, sometimes have to ask specifically what is in the menu items.  I am sure at some point these people have brought their own food to a party or over to someones house they were invited to.  We have to do this on a regular basis.  Katie has eaten many grilled cheese sandwiches for Christmas dinners and  Easter dinners, and has eaten many pieces of pizza for baptism parties and outdoor picnics.  Our families have been wonderful over the years, making sure there is something available for her to eat that she will like.  Why she will only eat certain foods is beyond me.  She actually eats a larger variety now than when she was a little kid, but it still is very limited. 

Probably the biggest problem we have with Katie is that she eats so fast.  She will eat a cheeseburger in three bites if we don't watch her and tell her to slow down.  She doesn't hardly chew, she doesn't breathe, she just basically swallows the food whole.  I am so worried about her choking that we usually end up watching her the whole time she is eating.  When she is finished with her meal, she usually asks for more.  If she eats dinner before the family, she wants to eat again with us when we eat.  If you are eating something she likes, she will either try to talk you out of your food, or she will swipe it when you aren't looking.  I am lucky so far that she hasn't started stealing food out of the cupboard or fridge, but my friend has to actually lock up food from her Autistic daughter so she doesn't eat it all. 

The quickest way to Katie's heart is through her stomach.  One year Santa actually brought her a pizza for Christmas, wrapped it in wrapping paper and put it in the fridge.  Guess what?  That was her favorite present that year, the only thing she asked for that Christmas, and she is still talking about it to this day.  Want to be her favorite aunt?  Bring her to McDonald's for lunch.  Want to be her favorite Grandma?  Bring her a bagel from Tim Horton's for breakfast.  Want to calm her down after a tough day?  Tell her we are going to order a pizza, and better yet, let her help order it online.  Her godmother always includes a bag of Doritos with every gift bag she gives her.  Her aunt sent her Cheeze-Its in a care package to 5th grade camp.  Both grandparents keep a supply of her favorite snacks on hand.  Her uncle was the best ever when he took her to a Red Wings game, in a suite that had an all you can eat buffet.  I think she liked the buffet better that the game.  On her birthday another aunt treated her to a Tigers helmet filled with popcorn at the Tigers game.  Her best friends mom always makes sure there are Doritos in the house when we are coming over, and was devastated when her husband accidentally ate them before we got there.

It is actually hard to describe how much Katie focuses on food unless you see it first hand. Until you hear her ask for a snack from the pretzel stand in the mall, when we have just eaten lunch.  Or ask for another glass of pop when she has just had 3.  Or devour an entire plate of pizza crusts when you aren't looking.  Then maybe you will understand why we have to say "no" sometimes when she asks for more.  But if you ever decide to join us on our Adventures in Autism, you might want to pack a picnic lunch.

Thursday, January 5, 2012

What I Don't Want

What I don't want is for you to read my blog and think that I am mad at you.  I have so many people in my life, that when I write, I write about things that have happened many, many times, and things that have been done by many, many people.  What I don't want is for you to think I am singling you out, calling you out, for doing something to upset me.  Katie, our family, and I have been dealing with Autism for over 10 years now.  Nothing you say or do hasn't probably been already said or done before. 

What I do want is for you to enjoy reading about how Autism has impacted our lives, and the lives of those around us.  I want you to learn more about what goes on in "everyday Autism" because when you see us, we are usually on our best behavior, so you might come to the conclusion that Autism is easier than we make it out to be.  If Katie acted all the time like she acts when she is out in public, this would be a piece of cake.  In some ways it is fortunate that she saves the worst for home.  That means less embarrassment and less frustration.  That also means that others accept her more willingly.  On the flip side, I think it also gives people the impression that Katie is a calm, sweet, happy child all the time.  Don't get me wrong, Katie is a wonderful girl.  I don't want to make her out to be a monster at all, that is far from the truth.  And I am very aware of the fact that she is very well behaved for a child on the Autism Spectrum comparatively. 

What I don't want is for you to think I am complaining about Katie in any way.  I love Katie so much that it makes me cry.  I don't want you to think I am looking for pity, or that I am feeling sorry for myself.  God gave me Katie the way she is, and although life has been a struggle at times, it is the life God intended for me to share with my family, and I wouldn't trade it for anything.  I was hesitant to begin this blog, and I have found myself hesitating before writing certain things.   If you read my words and believe that I am writing them to share my experiences, not to be mean or to create sympathy, then I will have accomplished something worthwhile.

What I do want is for you to laugh out loud, you can even shed a tear or two.  I want you to read about our crazy times, our hard times.  If you have Autism in your life, I hope that you can relate to me on a certain level, so that we can know that we are not alone as parents, or siblings, or teachers, or grandparents, or friends of Autism.  I want to reach people who do not have Autism in their lives, or want to learn more about it.  I want to teach people who don't understand Autism what it means on a day to day basis.  I also want to gently remind those who think that sometimes Autism is a game that can be played, remind them that they may be hurting more than they are helping.  That although they think something might be funny, they may be making it very, very hard on people who have to live and breathe the consequences later on.

What I don't want is for people to stop being as gracious as they have always been towards Katie, and all children impacted by this condition.  What I do want is for you to continue reading what I have to share about my Adventures in Autism, and that you remember Autism isn't always what it appears to be.

Sunday, January 1, 2012

Planning the Parties

Katie loves to plan.  Parties, vacations, simple get-togethers with friends and family.  You name it, she is planning it.  First she will come up with an idea, or a reason for the event.  Then she will start talking about it with everyone.  Next she will decide who is invited (usually everyone she knows).  Of course she will choose when and where it will take place, and what else has to be done to get ready.  She will talk and talk about what is going to take place, with anyone that will listen.  Often she will start planning months in advance.

Katie's plans are seldom good ideas.  I don't mean that we don't like to have get togethers, but she doesn't put any thought into our busy schedules, or limited party budgets.  Those small details do not occur to her.  She will latch onto an idea, and run with it, and get really upset when the plan does not pan out.  The hardest thing to do for me is to stop her party railroad before it leaves the station.  She gets very upset, will start to cry, and badgers and bugs to try to get her way.  If I don't stop her from the beginning, however, it gets harder and harder to make her understand. 

Some people do not understand how these things work, and think that encouraging her and making plans with her is a fun thing to do.  They get caught up in her enthusiasm, and don't want to tell her "No", so they have fun with her.  They will get into the planning, making suggestions, thinking it is real funny.  Let me tell you this, right now, so we are clear.  You are making my life hard.  You are going to be crushing Katie's spirit.  There will be a lot of crying and hysterics going on when we get home, and some of it will be coming from me.  It will not happen when you are around to see it, because I do not like to make a scene in front of people.  But I guarantee, once we get into the car, or get home, the fireworks will begin.  I will have to tell her that her plan cannot happen because of whatever reason, and then she will become hysterical.  She will cry, she will yell, she will become so overwhelmed by the drama that we won't even be able to understand what she is saying.  It is frustrating, it is exhausting, and it is heartbreaking.  It is Autism at it's finest. And you won't know anything about it. 

I know that people do not do this to be mean.  I have a very caring and supportive group of family and friends.  Katie is a very animated, fun-loving girl, and everyone loves to hear about what she wants to do.  I love that everyone gets drawn towards Katie, that means the world to me.  I don't want people to stop having fun conversations with her, or stop listening to her plans. I do wish that they would not make her promises that they will not be able to keep, or make her promises that they won't even be there for.  Or make her promises that they are not in the position to be making, because her parents should be involved in any plans that are made surrounding her. 

I am not an especially strict parent.  I do not keep my kids in a bubble.  I love when my kids can go out with their friends, and especially their family.  I love having parties, and get-togethers.  I really love when Katie has an opportunity to experience a new fun situation.  I am nervous about it, but I let her live her life as big as she can.  But I need to be the one, along with my husband, who makes these decisions for her.  Because we, as parents, are going to be the ones who are there for her every step of the way.  This is true for all parents, I am not claiming that this is only to be applied to Autistic children.  However, Autistic children can not always grasp the "bigger picture", and Autistic children sometimes do not handle rejection well.  And Katie needs all the help she can get on learning how to live in "our world".  So, as a parent of an Autistic child, I am begging you not to make my Adventures in Autism any harder than they already are.