Where each day's colors blend to become "My Stained Glass Life"

Oh, As*!&%perger’s!

Asperger’s Syndrome, a developmental disorder that affects a person’s ability to socialize and communicate effectively with others.  Children with Asperger’s Syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.  Asperger’s syndrome is generally thought to be at the milder end of the autism spectrum. While there is no cure for Asperger’s Syndrome, children can learn how to interact more successfully in social situations (paraphrased from Mayo Clinic.com).

Where to begin? The words, Asperger’s Syndrome, have been a part of our lives now for 3 years.  We knew for a long time that Bass struggled with many things that neurotypical children did not.  We brought things up with his pediatrician from the time he was an infant and were pushed aside as overprotective and worried parents.  But a parent knows things that physicians do not.  In many ways, when we got a diagnosis, those words were a relief to us as parents.  We finally had an answer, a starting point for helping him.  We were able to begin to deal with the information, develop a plan, advocate EFFECTIVELY for him, and the ‘bad parent’ feelings were subdued.  When Lulu Grace began struggling, I felt like we at least knew what we were dealing with this time around.  It didn’t make getting her diagnosis any easier, but we didn’t feel quite so overwhelmed.

Bass and Lulu Grace are amazing gifts, beautiful children full of more compassion than I’ve seen in the pinky finger of most people.  Bass still gives me hugs, just because!  He is SO smart.  Although he struggles with school, he aces standardized tests, scoring in the highest percentiles.  Lulu Grace hates school, but carries a song in her wherever she goes.  She has a great sense of humor and sees things in unique ways.  I cannot imagine our lives without their quirks and cleverness.  On the other hand, our family has struggles that we did not anticipate.  We have had to develop our own mode of operations, to learn that it is important to choose our battles carefully, and develop the ability to say, “We’re not perfect, and that’s okay!”   We have ALL had to learn new coping skills, ways to step out of the situation at hand and not let our emotions take over.

So here’s my secret…  There are days of chaos, where no matter how well we have planned and tried to foresee potential situations, Bass or Lulu Grace just cannot cope.  On these days, I know as a mom that this is the most important time for me to be able to keep my cool.  It is my role on those days to support them, guide them, and give them the tools to begin to create healthy and effective patterns of coping.  Oh, As*!&%perger’s! is the image I get in my head on these tough days.

If you’re an Asperger’s parent, I hope you can identify with the phrase!  I don’t use it because I want to ‘define’ my kids or excuse their behavior.  There are times where something simple becomes a huge obstacle course.  I get so angry to see Bass and Lulu Grace struggle with things that come so naturally to other kids.  I don’t want to take that anger out on those around me (which I have to admit I have been guilty of doing!).  I don’t want to get upset with them for not being able to navigate something that seems easy to me.  So I have decided that on those days, the best thing for me is to break my cardinal rule of always talking like a lady and scream in my head, “Oh, As*!&%perger’s!”  It certainly doesn’t solve anything, but I feel better!  And then life can go on…

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