Sunday, May 20, 2012

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.

Tuesday, May 15, 2012

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.

Tuesday, May 8, 2012

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.