Thursday, July 26, 2012

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.

Monday, July 16, 2012

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. 

Saturday, July 14, 2012

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.

Friday, July 6, 2012

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?