I've Learned a Few Lessons This Week....

It's been a rough week....  

The past few days in particular have been difficult.  I set this week aside to deal with medical insurance issues (Angry Mommy--that would be me--is still trying to get our company to cover speech pragmatics for Noah), make follow up appointments for Noah (something I have been trying to do since February, but have been unsuccessful in doing, due to the system(s) I have to deal with) and accomplish various other tasks.  So far, I have been unsuccessful in accomplishing any of these, although not for my lack of trying.  Along the way, I've learned a few lessons.

First, for whatever reason, our insurance company is closed this week.  I have yet to figure out why, because this is a HUGE, nationwide company.  I find it difficult to believe they would close for Easter week.  Of course, I didn't find this out until I had jumped through their many phone-related hoops, though.  I received yet another phone recording telling me their office was closed and to try again during normal business hours, 8am-8pm, my local time.  It was 10am when I made the phone call.  I have yet to figure out the lesson learned here, other than they will have to deal with Angrier Mommy come Monday.

Noah was diagnosed in January and we were told to make a follow up for June ("Congratulations, your son has Asperger's Syndrome, we'll see you in 6 months.").  I have been trying to do that since the end of January; as of three weeks ago, I was told the doctor hadn't turned in her June schedule and I would have to keep calling back.  At that point, I asked if we could just schedule for May because I was getting tired of this little game:  "I'm sorry ma'am, but she's booked for May."  When I called back this week, I was told she was booked through June and I would have to schedule for July.  I lost it at that point because this was just unacceptable.  It's unfair to Noah and he deserves better.  I explained in no uncertain terms that my son is already a patient of this doctor's, that this was simply unacceptable, and I would be calling back every single day until they figured out how to fit him into her May or June schedule.  The scheduling person offered to have the doctor's nurse call me back; I said that would be great, as I've been trying to get in touch with her for several weeks now, also.  That night, I emailed the doctor my frustrations: how I have tried several times to get in touch with her nurse and the run-around I have been given in trying to schedule a follow up appointment for my son.  I had an almost immediate response the next day.  I was surprised to find out that her June calendar has been up since January, and even better, she's going to have her nurse call us next week to fit us in the first week of May.  Lesson learned:  When all else fails, forgo patience, give in to frustration and go straight to the source.  Of course, now I have to hope the nurse actually calls back.  I'm so tired of wait lists, closed wait lists, hearing that our insurance isn't accepted, and so on.  It's enough to make me cry most of the time.  I'm only trying to get help for my son.


I also learned a valuable lesson in being specific with a child with AS.   You'd think I'd know this by now.  Shawn actually remembered to pack his lunch the other day, but then forgot it on his desk here at home.  He called me to double check, then said he was turning around to come back for it.  I should have asked him how far away he was.  I handed it to Noah and told him to run out to meet his dad with it.  I should have been more specific:  Wait at the stop sign for Daddy and don't go any further.  We live at the end of a cul-de-sac a little far back in our neighborhood, there is a busy street at the end of our neighborhood, then a major 2-lane highway at the end of the that busy street.  I soon got a panicked phone call from Shawn:  "DO YOU KNOW WHERE OUR SON IS?????"  "Yes, he's at the end of the court at the stop sign, waiting for you, right?"  "NO!!!  He's almost to 28!"  WHAT????  Our son had made it almost to the major 2-lane highway.  In his pajamas.   I had told my son to run and he did just that.  Just like Forrest Gump, he started running and kept running.  My poor child.  When he got back home, I just hugged him and we went over what Mommy should have said.  I didn't even bother asking him my usual, requisite question: "What were you thinking?!"   I know what he was thinking:  "Get Dad's lunch to him."  I'm just lucky he didn't make the 45 mile trek into Shawn's office on foot.  This time, I was the one who wasn't thinking.   Lesson learned:  Be specific, VERY specific, in my instructions to Noah.


I don't know if there's a lesson in this one.  It was more of one of those "Dear Lord, how am I going to get through raising this child?" moments (the grace of God and good pharmaceuticals for both of us?!  Kidding, just kidding....).  Noah was literally running laps around the checkout stand at the grocery store (I normally have a better handle on things, but it was turning into one of those days) and begging for a Mello Yello (WHEN HAVE I EVER LET HIM HAVE SODA????).  The woman in front of me was actually taking pity on me, instead of giving me that "Control your child, lady" look that I usually get.  Maybe it was the look on my own face, I don't know.  Whatever it was, God bless her for not judging us.  I yanked Noah to me by his shirt collar (desperate times call for desperate measures) and explained that I did not need him towing my car home and therefore there would NOT be any soda (I also latched his hands onto the cart and told him not to move).  The woman in front of me burst into laughter, then immediately apologized to me, saying it was the funniest thing she'd heard all morning and she couldn't believe how matter-of-fact I was about it.  I explained to her that if I allowed my son to have this soda, he would be able to tow my car home, then return and do the same for her (a la the old Mike Myers/Nicole Kidman SNL jungle gym/playground skit).  *I think Shawn and I are finally seeing eye-to-eye on the medication issue.  Or maybe I'm just wearing him down.  I think he is understanding that if we don't do something soon, we'll be medicating me, in a padded cell where I can wear one of those nifty self-hugging jackets.  And he'd be raising our lovable little hellions on his own.  I don't want a zombie or a child I can control, I just want a child who can function in society.


I've also learned just how much I can love someone else's child.  Avery is in love my friend's oldest son (13 years old) and now, her son has also taken on looking after Noah.  At least he did the other night.  We're in a delicate situation with several of our neighbors.  They are one of the reasons we moved Noah to private school.  As much trouble as we've had, for whatever reason, Noah still wants to be accepted by these kids.  To avoid engaging in gossip, I won't say anything more than that.  My friend was over with her children Monday night and all the neighborhood children were out in the court playing.  In spite of our instructions to play in the backyard, we looked out the front windows to see Noah and his friends in the front yard, inching closer and closer to the court and the basketball hoop where all the neighborhood kids were gathered.  My friend gave the signal that it was okay for her kids to go and my heart ached.  Noah wanted so badly to join them, but experience told me it would not be good.  I watched Noah climb the tree in our front yard and my heart shattered.  I called him inside, talked with him and then gave him permission to join the other kids.  Shawn, my friend and I staked out the driveway to watch.  My friend grabbed her son to say something to him, but before she could, he said, "Mom, don't worry, I got this."  From then on, he cheered my son, watched over him, made sure he got plenty of time with the ball and just looked after him.  It made my heart sing and I wanted to hug him. Later that night, I thanked him for being so good to my boys.  He told me that it's okay, it's nothing.  But it isn't "nothing," it's everything to this mommy.  And to my son, it wasn't just a tidbit of normal, it was a gigantic moment of normal.


Last but not least, I learned that not everyone is educated about the Autism Awareness ribbon.  A woman noticed my pin on my blouse and asked if I'm a survivor.  In typical Amy fashion, my mouth worked before my brain and I jokingly replied, "Yes, I survive it everyday, I suppose!"  She gave me a puzzled look and said, "I'm sorry to hear that.  I hope you recover quickly and easily."  It was my turn to give her a puzzled look.  It took me a few more seconds to realize that most people equate the awareness ribbons with cancer.  Neither one of us were on the same page and this was my moment to educate her.  I quickly let her know that the multi-colored puzzle piece ribbon is the symbol for Autism Awareness and my son has been diagnosed with Asperger's Syndrome, a high-functioning form of Autism.  "Ooohhhh."  Yes, I survive it everyday.....  In left field....


*As I was typing this, God stepped in to make my week a little brighter.  A phone call I have been waiting on for over three months (and hassling the respective clinic about on a weekly basis) called to double check all of our information and to let me know that I will soon be receiving another phone call from a new caseworker for Noah.  How soon "soon" is, she couldn't tell me, but this means we've been bumped up on the waiting list and Noah will soon be receiving the rest of the testing (educational, social/emotional, cognitive, etc)  that was started back in February.  These tests will give us more insight into the AS diagnosis, possibly confirm an ADD/ADHD link (which he has not yet been diagnosed with and which I question), tell us if Noah could have any other learning disabilities and give us suggestions on how to handle all of this in his best interest.  Finally, things are beginning to fall into place there!  I also received a second phone call from the nurse, giving us an appointment for the first week of May with the diagnosing physician.  Praise God!  Now, if I could just channel with someone from our insurance company and have them call me to approve speech therapy......