Friday, January 9, 2015

Wrong (Again)

Caden has been having a lot of stomach pain, especially at night.  The last few weeks it has gotten to the point that he is also vomiting.  I managed to snag a doctor’s appointment, and Caden, Elf, and I headed over to our pediatrician’s office.  Because we have been dealing with this for so long, we managed to let ourselves be convinced that this was stemming for his autism and anxiety.  Caden has always had more difficulty with emotions and processing the entire day’s experiences at the very moment he tries to lay down for bed.  Given all of this, I expected a fairly quick in and out appointment.  So imagine my surprise when the doctor decided to order bloodwork and x-rays.

WOAH—this isn’t even close to good news.  Well, from a medical standpoint it ended up being great news, but from a Caden has autism standpoint this wasn’t even the slightest bit okay.  Our plan was doctor’s office, Walgreens, home.  Say it with me: doctor’s office, Walgreens, home. One more time: doctor’s office, Walgreens, home.  Nowhere in our scripting, planning, foreshadowing did it say doctor’s office, go to the lab for bloodwork, go to the hospital for x-rays, Walgreens, home.  Get the point—this is a huge deviation from the plan.  Further complicating the situation is the fact Caden likes to get his bloodwork done sitting on his daddy’s lap after his numbing cream has had a chance to work.  Neither daddy nor the cream was with us.  Poor Elf was getting nervous energy for his boy and his boy’s’ mommy.  He may have aged a bit in those few minutes it took us to get to the lab.

Then we walked in the lab and Caden decided he wanted to sit in the chair by himself.  He sat there watching his Ipad while the phlebologist drew his blood.  There were no tears, no restraints, no daddy, and no numbing cream.  He even managed to answer an unprompted casual question during the whole process. She asked him what grade he was in and he replied 2nd.  I was ready to leap for joy, but then I noticed her face. She was calculating or thinking or something and I was pretty sure whatever she said next wasn’t going to make any of us happy.  I was desperately hoping it was a bloodwork issue, but instead she said “well I know someone who is your age and they are in 3rd grade. I just don’t understand why you aren’t in 3rd grade with your birthdate and all.”  I was stunned into silence; I needed a response that didn’t involve crying, punching her, or teaching Caden new curse words.  And while I was mentally fumbling, my brave little boy spoke up and said “well my Children’s House” (kindergarten in the Montessori fashion) “teacher really needed a special helper so I stayed another year to help her.”  And with that I gave Elf a command and we headed to x-ray.

I drove home though knowing that I had messed up.  I should have had something to say.  I should have handled the situation.  I should have made sure that she understood that when a child walks into her office with a service dog that is clearly identified, no matter what you see or don’t see, you should assume that child has some difficulty or challenge in life.  She should have known that challenges or not, people don’t deserve to be compared in that way.  But it was my 8-year-old who handled the situation.  I messed up.

I’ve written about messing up as a parent before.  Remember when I talked about thinking Caden didn’t recognize emotions when in fact he recognized them deeply but didn’t know how to handle them.  And there have been many more instances that I have discussed on this blog.  But the next one that I’m going to share with you had real physical implications for my blue-eyed giggle monster.  We associated his pain with autism-based anxiety.  The phone call from the doctor’s office later that day let us know that there was a very real medical cause—a blockage—that if left untreated could have had dire consequences.  Thankfully, the medications eventually worked without surgery, and then we noticed how very wrong we had been.  We thought his autism and anxiety increased, which in turn increased his pain and vomiting.  But we had it all wrong.  Little by little the blockage broke down and many of those difficulties that he was experiencing also broke away.  The pain was in fact triggering his autism flight or fight response as well as his increased anxiety.  As the treatment became more successful we realized that we didn’t need to start the biofeedback therapy that one of the doctor’s had given us as a last option nor did we need to increase any medications.  We just needed to read the signs better; he did everything he knew to do to express and deal with the pain.

So is this a blog about parenting failures?  Yes. I think it is important for people to know that being a special needs parent doesn’t make you perfect.  All of the talk about special people being given special children makes me nervous.  If there’s anything special about us, it is because of our children and what they have taught us. The other failure here is that the idea of his pain being caused by autism and anxiety never sat well in my mommy-radar, but I let the “experts” convince me otherwise.  Now that is one of those rookie mistakes that I am embarrassed to even have to admit to at this point in the game.

Is this a blog about listening to your child no matter how they communicate? Yes.  We need to realize that everyone communicates differently—regardless if they have an official diagnosis or not.  It doesn’t matter if they can see, or hear, or talk, or what language they speak.  We need to try harder to read the clues that are right in front of our face.  For us, we should have realized that Caden’s pain never moved; every time he was asked he pointed to the same spot.  Anxiety would have moved around, but he consistently pointed to one spot—the very spot the blockage showed up on x-ray.  Plain and simple, he told us and we didn’t listen.

It’s another one of those experiences that has left me realizing that no matter how many degrees I have, no matter how old I am, no matter how much I think I know or try to teach my blue-eyed baby, he will always teach me more about life than I could ever imagine.  At one point I thought I was leading this journey, but it becomes more and more clear to me every day that this truly is Caden’s tale.