The Mom I Want to Know

  I'm sitting at IBH (Integrated Behavioral Health) this morning with my oldest daughter, waiting for an appointment with our 3rd new psychiatrist in the past year. On the table of the IBH waiting room is a table full of celebrity magazines. Kim Kardashian stares up at me and the cover article invites me to take an inside look at her life. I look up to see a young boy, probably about 10 or so years-old (my daughter's age) come out of the office and close the door behind him. He has on wide-rimmed glasses and something about him, his lovable quirkiness, makes me wonder if he is on the spectrum like my baby. His mom asks him how his session went, then she gets up to go see when she should bring him back. I can't hear the receptionist's answer, but they must not need to come back for awhile because the mom smiles at her kid and says, "Well, you must be doing good, then. Way to go!" Something about this simple exchange makes me want to know this mom- to become her friend and see how she is navigating not only the already murky waters of raising a pre-teen, but raising one who has the need to see a psychiatrist for whatever reason (ADHD, Asperger's, whatever). I want to say, "You must be doing good too, mom. Way to go!", because I know it's tough. It's tough, not only watching your kid struggle, but also tough not knowing how to help them, especially when you have to maneuver through the hoops and red tape of insurance policies, ever-changing doctor, and waiting lists. This particular mom seemed to be doing this dance well and SHE is the mom whose life I want an inside view of. Not Kim Kardashian with her millions and her paid help. I want to know how this mom copes with having more than she can possibly do in one day and still raise a kid who needs a little extra from her just to grow up and be "normal". I want to know this mom and tell her she absolutely rocks in the way I want to rock. She's a rockstar mom, the kind I want to know, and being a rockstar mom is way better than being Kim Kardashian, and I guarantee it pays way better- just not in a tangible way. 

   

The Asperger's Road/My Advice for You

When I started writing this blog, I had hopes that I could help other parents in the early stages of an Asperger’s diagnosis with regards to their children feel a little less overwhelmed and lost; maybe I could guide them down the Asperger's road a little bit. I realize that I haven’t done as much of the explaining and paving of the road as I would have liked.  Here’s why: There is no road.

  When Presley’s first-grade teacher and counselor first approached me with the thought that my perfect, funny, brilliant daughter might have a “disorder”, I was floored. I wanted to read all I could read and figure it out, but, the more I read the more confused I was. The children in the books who were exhibiting “characteristic Aspergerger’s traits” of outbursts and violent meltdowns were nothing like my mild-mannered angel. I was horrified. I put the books down.

  When we finally accepted that this was really happening, we started the LOOOONG journey of trying to get the proper documentation and diagnosis. That is probably the one thing I have been able to document well during the course of our journey and you can find that journey in my blogs, "The Sparks Experience I and II" and "Catching Up".  The diagnosis, although it took nearly three years, a hunk of change out of our pockets and quite a few tears from pretty much all of us, turned out to be the easy part.  You pretty much have a limited choice of doctors in your area (and by "your area" I mean within a couple hundred miles") who offer the needed tests and your pediatrician and/or school can make the referral(s).

  After that, the “What now?” hits. What therapy does she need? Which doctors do we need to be seeing? What about her schooling? Do we stay in the small, private school we love with no IEPs or Special Education or move her to public school where the above is offered but her world is upturned by the loss of the familiar friends who have surrounded her since kindergarten? Homeschool? (Ummm….no. Please, God. Just no. Not for us.) I wanted to find every doctor, therapist, group, or counselor who could help her and FIX it NOW. What I found was that even if you do find the very best counselor for what you are dealing with at the time, tomorrow may present a whole new set of circumstances for you to deal with and then you start all over. But isn’t that life for all of us, diagnosed or not? The best advice I can give you if you are a parent stressing over if you are making the right decisions or not is what my friend and co-worker Connie told me was passed on to her and I agree, “We make the best decision we can at the time with the information we have on hand.” And also, “It’s ok to not have all the answers.” This last bit of wisdom is my own…Because, honestly, even if you DO find the right answer, tomorrow there is going to be a whole new question.  Ex: our precious OT in Huntsville, Sharon, helped TREMENDOUSLY with handwriting issues and shoe tying/self-care; but now we are looking for a Math tutor who understands how Presley’s brain works and where the answer is “getting stuck”, because we know she knows 9 x 9 = 81…so why the tears?

 I can tell you what has and has not worked for us, which doctors we loved and which centers we won’t waste our time with again, but in the end, your child and your journey is going to be different than mine. What I'd like to tell you is:

1.  Surround yourself with positive, Godly people who will pray for you.

2.  You, yourself, pray like CRAZY (with your spouse, if applicable).

3.  Just keeping facing each challenge as it arises, without letting them cause you to worry so much that you miss all the fun, laughter, and joy that comes with a child designed just the way God meant for them to be.