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So that’s why!

I’m feeling the need to explain myself. I’ll try to make it short, but you know me better than that.  I’ll also add photos to keep you awake, though…you’re so welcome.

I have been VERY unmotivated to blog. As is obvious from my lack of postings and then the ones I do post are recipes from other blogs, lame.

It all started in April. Well, actually it all started 10 years ago when S was born, but most recently April. S’s OT she was seeing at the time (for sensory issues we were dealing with-handwriting, coordination, aversion to tags and tight clothing-stuff like that) suggested we have a pediatric neuro-psychologist evaluate her. My heart rate increased (more on that later) and I started freaking out. When I freak out I cry, bite my nails, run and yes, you guessed it, eat lots of cookie dough. Nine pounds, six visits to Children’s hospitals and four months later I’m working off the weight and we are settling into an Asperger’s diagnosis with ADHD and motor coordination disorder (kinda like the Dyspraxia we already knew about). She is very high functioning and it’s a mild form of Asperger’s-but it’s still there. It’s one of those things that you feel relief to have something to lean on for an explanation to certain behaviors and terrified because your daughter was just diagnosed with a (mild form of) Autism! You feel this amazing sense of grief that she will have struggles that most of us don’t have to face in life. Excitement when you hear of someone with Asperger’s that’s successful and thriving. Daunting.

We’ve already gone through many layers of emotions-all of us. S was angry-very much so-for the first few weeks. Who names a social disorder “Ass-Burger”?!?!?! Just because it’s the guy’s last name does NOT mean it should label kids for years to come, but I digress. Now she thinks it’s the coolest thing to have an amazing “shortcut” that helps us define her strengths and struggles. Thanks to my mom and dad for finding this book-the first book we’ve found written for kids with Asperger’s that really made her feel proud of herself (the others are written mainly for boys and for kids who have been in public school and/or ridiculed by their peers). She loves this book. It was a great vehicle for her to share with her sisters (mostly A who was interested and has come up with the lots of questions i.e. “Will S marry someone who has Asperger’s” and “Is that why she goes to so many Dr.’s appointments?”).

 

El Guapo wanted to protected S from the harmful world around her (now we understand that there are a lot of resources we can use to help make it not so scary and brutal and difficult). I cried and then started calling and meeting with therapists, psychologists and other moms that have kids “on the spectrum” (“spectrum” as in Asperger’s falls on the Autism Spectrum). One thing we understand is that this diagnosis doesn’t change who S is, but it does allow us to know how we can better equip her for the life God has for her.

Do you see that little ringlet on her right shoulder? I just love her curly hair! Asperger’s kids have a couple of “special interests” that they know everything about. American Girl Dolls is S’s. Here she’s posing with her look-alike doll that she named Samantha because her own initials spell “S.A.M” and Sam is Samantha’s nickname. They are very good friends.

We aren’t completely settled-probably never will be, but we are feeling more comfortable with this adventurous life God has given us.

There’s more to come about where I’ve been. Stay tuned!

La Gringa

p.s. It’s been fun looking through pictures for this post. Photos of S are so wonderful. There’s not many moments in her life that are slow. These precious pictures offer a snapshot of her that allow me to soak her all up like a cold glass of fresh squeezed lemonade and a chocolate chip cookie.

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5 thoughts on “So that’s why!

  1. Anonymous says:

    Oh Lori, I loved this post :). Like all of your musings, it was written with such heart, and such love. I agree with your mom… S is so blessed to have you and A as her parents… God knew before any of us that you were meant for each other. BTW, I didn’t know the story behind the name Samantha. As is the case with all of your blogs, I learned some things I didn’t know. I’m always so glad I took the time to read your touching and uniquely funny writings… and I just loved your last sentence… only you could come up with such a perfectly fitting ending for this post.

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  2. Amy Y says:

    Wow ~ Thank you for sharing Lori! I can imagine the range of emotions you and your family must be feeling….
    S is a beautiful person, inside and out. I’m glad for her that she has parents that took the time to figure out just what makes her so awesome and unique… this will help you understand her and just make your relationship blossom into all it can be. Awesome!

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  3. Lori, I wanted to encourage you in this. All lot of children with Asbergers and ADHD grow up to be successful adults just a little quirky. There is a special place for S it just isn’t going to fit into what people deam as “normal”. These aren’t labels. These provide understanding and allows service providers to be on the same page in regards to S treatment. You guys are so fortunate to have the resources where you are living to get S all the help that she needs to be a successful, inderdependent adult. It can feel like a death sentence when you first get this kind of news but it isn’t. Some of the smartest people I have met have had Asberger’s and ADHD. I work with kids with both so if you ever want to chat or vent I am a resource to you 🙂

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  4. Aunt Karen says:

    What a beautiful post, as well as, a special tribute to our precious S. Love that little gal! Know that this has been a difficult process, but it as given you much information, and hopefully much encouragement as you move forward.
    Love you all so very much!

    “Today is the tomorrow you worried about yesterday, and all is well.”

    “Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge Him, and he will make your paths straight”
    Proverbs 3:5 (Know you do!!)

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