Labels and Sweaters and getting beyond them

In the past year, my oldest child was diagnosed Asperger's.  It wasn't a surprise and I don't like to call it a syndrome, because I don't think he needs to be cured.  Most days I just think he needs to be understood.  It has been a funny journey.  He is five years older than his brother, so he was an only child for a long time.  I have never thought of him as having problems, some challenges, but it is just who he is.  With your first child, you don't know there is a "normal" you just know this is your child and you work to make life happy and healthy.

When you look at your children, I think you naturally look for ways they are like you or different from you.  I have found that often it is the ways that they are like you that are most difficult to deal with, especially if they are parts of you that make you uncomfortable.  I feel as I write this that I need to say that I love this child more than I could ever have imagined.  When he was born I had pretty severe postpartum depression.  I sometimes say I don't remember much of the first six months of his life, but that isn't true.  I remember a great deal.

I didn't fall in love with him the moment he was put in my arms, although I do remember being in recovery and shaking like a leaf.  The nurse said I couldn't hold or feed him until I stopped shaking.  It was not long before I was not shaking, but I remember putting all my energy into calming my body so that little person I had been carrying inside me for 9 1/2 months could finally be in my arms.  It was wonderful that he was finally with us, but overwhelming.

I think of it as a privilege that I remember the moment that I "fell in love" with Harry.  We were in a park in our town for a picnic and he was probably less than 2 months old.  I just remember looking at him and thinking, "Huh, I really love this baby and I can't imagine life without him, how did that happen? Thank God, I finally can honestly say I understand this motherly love feeling."

Here he is at 2 months or so putting up with our antics patiently, with a look of forbearance which we still see sometimes

I think that is one of the ways Harry and I are alike, it isn't that he doesn't feel the same emotions the rest of us feel, it sometimes takes him a while to express or even realize that is what he is feeling.  The world is a very overwhelming place to a person with Asperger's.  I can honestly say, that I really don't understand what it is like to be in Harry's shoes, but I have glimpses.  Like falling in love with my baby, there are many things that take me a while to process.  I can't always say right away how I feel about something that has happened, but if you give me a while, I will be able to do so.  So parts of him fell right off my tree, I would guess.

Like Harry I am not touchy feely and sometimes I even shy away from touch.  I never really noticed it until Harry came along.  My husband probably did, others in my life too, but that is just who I am, I never thought much of it.  Experts call this a sensory problem, to me it is just who I am and who Harry is.  It isn't that we don't want to reach out, if you watch Harry especially, he does, but it is on his terms.  When you sit with him reading or doing something, you often find he is right up next to you, but he needs to be the one moving towards you.  I have always been perfectly comfortable with this about Harry, now I recognize that is because we are alike in this way.

Another thing I was recently talking to my Dad about is looking people in the eye.  This is a very typical challenge for kids with Asperger's and other forms of Autism.  I remember in my late teens or twenties reading something about interacting with other people and how important it is to look them in the eye so that you can establish a rapport with them.  It was a revelation to me, I realized that this was something I was not very good at, especially with strangers.  I started working on it and I think I am pretty good at it, but to this day there are times when I am in a conversation, that I find myself reminding myself to look at that person in the face and in the eyes.  My Dad seemed a bit surprised by this when I told him.  I guess that just goes to show you that even those people in our lives we think we know most, may have something they are hiding or struggling with.

This whole journey of raising my Harry has been a lesson for me.  It has taught me how to see the world with different eyes.  It has sometimes made me turn inward as a person or even as a family.  We need that sometimes to regroup and to get through.  But I can honestly say that although I still think that there are lots of crazy people out there, I don't judge them.  I realize that you just can't look at a person and recognize what is behind their behavior.  The imperative as a human is to love and to accept, because really how else can we all get by?

So what led me to write this today?  I don't know really, I have just been processing for the past seven or eight months this diagnosis of my son.  My brilliant, funny, quirky and very human son.  I can't tell you in enough ways how wonderful he is and how I am confident that he is the kind of kid and will be the kind of adult you will be thrilled to have as a friend or a colleague.  However, he isn't perfect.  He can be rigid and he is blunt.  His social skills are a growing edge.  He doesn't melt down often, but when he does, my goodness it is an amazing thing to behold.

Last night we watched Big Bang Theory - a very funny show and one of the main characters is a lovely example of one way a person can be Asperger's.  In the show one of the characters was forced to wear a scratchy sweater by Sheldon (the Asperger's character) until he could solve a complex social problem.  It ended up taking him a few days and the sweater made him crazy - he itched and he hurt and he was frustrated.  It was such a wonderful example of what it is like sometimes for a person with Asperger's.  It struck a chord for me.  We look at Harry and because he is brilliant and funny and lovable we forget that there are things he needs that don't make sense to us.  When we miss those needs, he is stuck in that sweater - hot, itchy, confused and going a little crazy.

My job as a Mom is to help him take off the sweater and hopefully to teach him how to knit one that won't itch, that won't drive him crazy.  I would love to make it for him, but like I have gone on a journey to discover myself and accept my own quirks, he too is on that journey.  He may have a few more challenges than other folks, but fortunately he has lots of folks that love him and a personality that is gentle and fabulous.

More recently in his favorite color with the hood up (which drives me crazy for no reason whatsoever), happy in his own skin which is exactly how I hope he will remain :-)