Dear Me

  I recently exchanged some tweets with a mom of a little girl who’s about six and a half years old and her parents strongly suspect she might have Asperger’s.  That exchange harkened me “back to the day” (which now seems like 15 minutes ago) to when we started seeing some things in our daughter we couldn’t quite put our finger on, but knew that it had to be more than “just” sensory integrationd dysfunction, something we knew she had since the day she was born.  In that spirit, here’s a letter to the me, the parent of our then six year old:

Hey You,

  First of all I want to say to you that you’re doing a GREAT job with your daughter.  No, I’m serious, you ARE doing a great job!  You’ve been a tireless student learning everything you could absorb about sensory integration dysfunction since the day she was born and you’ve made it your mission to do anything you could to help her on a daily basis.  And you’ve done all this while having another child with disabilities, who up until this point has been very medically involved.  And if that’s not enough, your marriage has been to hell, although right now it looks like it’s turning a corner.  Hang in there.  Keep reaching out to God; He’s there for you with a life line. 

  Keep listening to your gut, especially when it comes to ANYthing having to do with your daughter.  Through a lifetime of dysfunctional relationships you’ve convinced yourself that your gut can’t be trusted, but you’re wrong. You’re spot-on in thinking that she’s showing you she has more going on inside her brain than sensory integration dsyfunction.  No it’s not “normal” that she memorizes word-for-word the Bill Nye The Science Guy videos.  It’s wonderful and YES, she IS understanding 99% of what she’s watching in those videos, but it’s not a “sensory thing” for a five or six year old to memorize and recite science videos.  Same for SpongeBob-lots of little kids LOVE SpongeBob, but not very many of them recite the show word-for-word.

  There’s a reason the word “Asperger’s” keeps popping up into your mind.  Pay attention and don’t try to shoo it away to the corner.  Don’t let your pediatrician tell you that you’re right, but that there are no parental supports or services available to you in the community.  You are VERY, very wise though to get her going again in occupational therapy.

  Your daughter DOES have Asperger’s and everything, I mean EVERYTHING she says and does from now on will flow from that; tics, behaviors, habits, speech patterns, ways of relating to people around her, it can all be traced back to Asperger’s.  From that you need to get it in your head and heart right now that it’s not YOUR fault that she’s never been able to look you in the eye.  You know what I’m talking about and you’ve noticed since she was just days and weeks old.  You HAVE been a good parent;  you HAVE been nurturing, you HAVE been loving, you HAVE been adoring, you HAVE tried to meet every single need she EVER exhibited.  You have been sincere in all your interactions with her and I really need you to believe that it’s NOT your fault!!  It’s one of the key characteristics of having Asperger’s;  eye contact is all but impossible.  Do NOT let ANYONE tell you that she’s disrespectful because she CAN’T look at anyone in the eye, and for crying out loud, throw away ALL those old tapes running through your head about what it means to be a “good girl” or to be a good daughter.  You were raised with a level of rigidity and conditional love that military boarding schools can only dream of.  Your daughter IS a good girl, but she’s going to show it in entirely different ways than anything you’ve experienced.

  You are doing a great job of listening to your gut when it comes to homeschooling her, but please, please, please throw away ALL academic expectations.  Asperger’s is VERY MUCH autism and autism by definition is fraught with developmental DELAYS.  Did you hear me?  Your brilliant little girl has developmental DELAYS.  She’s not going to be able to write very well for a few years, so put aside the writing primers and pencils.  Your daughter is also a kinesthetic learner.  She learns by DOING……EVERYTHING.  Don’t put a workbook in front of her for YEARS. She’ll be fine; she’s a SPONGE and is learning everything all the time, the last thing in the world she needs is to be saddled to a chair for anything more than eating.  RELAX.  I know your getting messages from your father as to what homeschooling “should” look like.  It’s just an OPINION.  Your father is not (and never has been) God.  Stop being intimidated by him and teach YOUR daughter in the way that is natural and comfortable for YOU (and the same goes for your son too).

  Your daughter is going to come up with tics and behaviors.  It’s okay, it’s all a part of having Asperger’s.  These are soothing motions she does with her hands.  It’s not your fault!!  Yes, your life has been a bit crazy, but not everything that goes on with her is a direct result of something you did WRONG.  Let God come in and fill in the gaps.  Don’t let members of your family tell you your daughter is weird or that she sounds possessed with the sounds that she makes with her throat.  It’s their fear and control talking.  They’ve never been around kids or people with disabilities and they don’t have a box for you and your little tribe.  It’s scary for them.  Keep on shielding your son and daughter from the hurtful comments.

  There is nothing “mild” about Asperger’s.  You’ve already heard it and you’ll hear it countless times that Asperger’s is “high functioning” autism or a “light” version of autism.  It’s not.  Don’t fall into the mental trap of thinking that just parts of your daughter are effected by autism. Yes, she is verbal, but don’t let that fool you.  Having Asperger’s affects her ability to undertand the millions of subtle nuances in our everyday common verbal exchanges.  Her inability to “decode” language will be responsible for many, many (too many to number) misunderstandings.  Please try to remember that she’s not always trying to pick fights–she honestly doesn’t understand the subtleties of language.  She’s every bit as impaired as your son who has severe hearing loss and is non-verbal.

  As if Asperger’s and sensory integration dysfunction aren’t enough to keep you busy with your little one, you will start to see some other things in her behavior that go beyond the Asperger’s diagnosis.  People in the “know” call them “co-morbid” conditions.  Again, these behaviors and attitudes are NOT your fault.  Your daughter IS fearfully and wonderfully created, but the “thorn” in her side, might be managing some chemical imbalances present in her brain.  Please just know that she’s not acting out because she hates you or that she is miserable in your family.  Her challenges have nothing to do with your competency or lack of love for her.  She knows you love her and then she’ll go pull out all her eyelashes.  Please don’t take it personally.  I know that’s easier said than done, but please say that to yourself 515 times a day until you believe it.

  That’s enough for now.  Just love her as she is; a precious, brilliant, sensitive and deeply spiritual girl who hears the voice of God in her heart.

Peace,

The wiser you

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