Tuesday, January 1, 2013

Keep calm and carry on

Here we are.  A new year, full of new goals and plans (or maybe just old goals brought back to life).  Maybe it's the holidays and all the time I've had with friends and family and the two week vacation I've had with Joe, but it's hard to shake my positivity.

Last Thursday, we had our follow up appointment with the behavioral psychologist that saw Davey at the beginning of December.  I drove to the appointment alone, full of anxiety.  Not because of what I might hear, but just because I wanted it over with.  All the speculation over my child has been nothing short of heart wrenching and it takes everything within me not to scream "Leave him alone!"  But you can't react that way to care and concern.  Or maybe you can and I just lack a back bone.  It's probably that second one.

After waiting for the doctor for what seemed like a year, she finally called me back to her office and sat me down with hundreds of pages in stacks.  They were a mix of literature on children with special needs, files based on his medical history, all the questionnaires I filled out at the last appointment, and I caught myself scanning over every stack just looking for that one word.  Autism.  Just go on and say it, lady.  My kid has some form of autism.  Sure enough, about 10 minutes into her explaining a bunch of stuff that was basically just white noise to my right brained self, there it was towards the bottom of the page she was pointing out - "It is likely that Davey has Pervasive Developemental Disorder - Autism Spectrum".  I took a deep breath, waiting for her to get to that part of the page.  I forced myself to tune in a little harder so I could really understand how she came to that conclusion.  She said a lot about how he was a very kind natured child.  He's very easy going.  But that this would be a probably be a problem when he reached school age, as he places no value on someone asking him to do something.  He's in his own little world.  He's interested in the things he's interested in, but doesn't care about things he isn't.  And, again, this is a problem...

I asked a million questions, trying to wrap my head around all this information.  But I was never...scared.  Not upset.  Not unsure of what to do next.  I engaged with the psychiatrist, and understood that basically all of this stuff just means Davey understands things differently from "normal" children.  I've always wanted my children to be as individual as they can be.  Please be different, little birds.  There shouldn't be anyone like them.  It wouldn't be right.  She said that these things Davey wasn't doing were things that would just require Joe and I to spend more time with him and really get to know what makes Davey motivated.  What makes him happy.  Deal! I just couldn't be afraid of what this doctor was telling me.  I heard her words, but I also knew what they meant.  And then, all of a sudden, SHE started crying!  One of the stranger parts of the appointment.  She said she sees parents all the time, that she has to deliver this kind of news to.  And every time she does she sees complete and total hopelessness wash over their faces.  They usually break down and don't know what to do from this point.  And here I was, smiling, staying positive, and not letting this stir me or make me think any differently about my darling prince.  And that made her cry.  Which really meant a lot to me and has since made me maintain that positivity. 

All that being said, Joe and I talked about all of the information she gave us.  We talked about how we felt about this doctor and about how our pediatrician, who's seen Davey since he was 6 months now, and who has screened Davey FOUR times for autism, didn't just disagree with the diagnosis, but seemed a little upset with how much he disagreed.  I never felt comfortable with this psychologist and seeing her at all was just to get insurance to cover him for speech therapy, not because we felt there was a need for seeing a behavioral psychologist.  All of this went against what felt right to Joe and I.  She called Davey "Aubrey" (his middle name) on several occasions, despite me correcting her.  She said things in his evaluation about how he "was unable" to stack rings on a ring stacker and "was unable" to build a tower with blocks.  But those things were only available to him for about 10 minutes and he was never asked to do either of those things.  I don't know that he would have, but he might have.  Our pediatrician recommended a second opinion from a more reputable doctor.  And Joe and I have talked about the fact that this doctor may come back and say "well, yes, he does have PDD", and we need to be prepared for that.  But ultimately, when discussing our child and his life, we want to be comfortable and satisfied that someone did what we feel is a thorough job.  And while the doctor we saw was perfectly fine, she wasn't one we were ever comfortable with.

Maybe Davey is part of this world of autism spectrum.  Maybe he'll learn things differently from Charlie.  Maybe he'll see the world in a different way.  In Davey's own particular way.  If you want me to me scared or worried about those things, you're barking up the wrong tree.  I can't be scared that my child - my beautiful, brilliant child - has anything "wrong" with him.  That it's "wrong" or that it needs to be "fixed" that he does these things in his own way.  Yes, I want him to be successful in a school setting and I do think it's important to take measures necessary to make him somewhat school ready.  I think, for now, at 3 years old, those measures are speech therapy.  I think, like everything in life, the best approach is one step at a time.  It was only two years ago that we were literally teaching Davey to take one step at a time.  Put one foot in front of the other and trust that mommy and daddy will help you if it gets hard.  Here we are now and that lesson is exactly the same and just as meaningful.


I'm scared of car accidents with my kids in the car.  I'm scared of high fevers and their teenage years when they don't want my hugs as much.  But I'm not scared that something is wrong with this sweet boy.  Look at him.  Everything about that child is exactly right.  If he has autism, if he writes with his left hand instead of his right, if he sleeps in his tepee tent for the rest of his life, nothing is wrong with my amazing boy.  He's just as he should be.  Happy and three.

6 comments:

  1. I love this. This reminded me of something I read today. I'm going to type it. It's kind of long, but I think right no target with what you are saying.

    Started with a quote by Ellen Goodman
    "We spend January 1 walking through our lives, room by room, drawing up a list of work to be done, cracks to be patched. Maybe this year, to balance the list, we ought to walk through the rooms of our lives. . . not looking for flaws, but for potential."
    It goes on to say..

    In my work in education over the last couple of decades, I've noticed what I consider to be a major flaw in the approaches that teachers take. They always seem to be trying to fix things in their students so that the students can "perform" well. Jenny can't read well, so let's spend some extra time working on her reading, because reading is a "necessary" skill. And Pete is having a hard time with math, so let's make Pete spend extra time on his math to bring him "up to speed."
    This may be news to some people, but there's a very good chance that Pete never will be very good at math, and that Jen won't become a good reader no matter how much time you spend with her.
    In the meantime, what about their real skills? What about the things they're really good at? Why not allow the students to focus on those things and spend the extra time getting really good at them. After all, Jenny's great with animals, and one day she could be an exceptional veterinarian. And Peter is an exceptional writer-- if all the extra time spent on math were devoted instead to making his writing even better, what might he be able to do with his future?
    In this New Year, there are many things that I would like to "fix." But if I spend time focusing on things that I do well and get even better at them, what kind of potential might I create for myself? What kinds of heights might I scale? What kinds of things might I do, and how might I be able to help others even more by strengthening my gifts, the things that make me uniquely me?
    For this New Year, I want to focus on developing my gifts and strengths, and as I do so, I know that I'll watch my flaws and shortcomings fade into nothingness.

    "Every new year people make resolutions to change aspects of themselves they believe are negative. A majority of people revert back to how they were before and feel like failures. This year I challenge you to a new resolution. I challenge you to just be yourself." Aisha Elderwyn



    Ok. That was long. It may or may not be helpful, but I had to share. Thank you for sharing your experience with us. :)

    ReplyDelete
    Replies
    1. This was helpful beyond measure. Because it not only applies to how I want to approach things with Davey, but how I should approach things with Charlie and, just as importantly, with myself. If I want to raise my kids with such a philosophy, it's important to apply it to myself. I was terrible in school. I never, ever got it. But I'm almost 30 and I'm so happy. Success.

      So glad and excited you're Iris's mom :)

      Delete
  2. First of all I love you.
    You practically made me cry.
    I wish I had something profound to say but you've said it all. Are doing it all. They have the best example in you and Joe.

    ReplyDelete
    Replies
    1. "I love you" is always profound. We love you, sweet Carey. Truly.

      Delete
  3. You are a brave mama. An amazing brave mama. My son has some form of Autism as well... and it has created problems in school. He can go from making all d's to straight a's in a matter of 3 weeks if he wants. If nothing else, remember you have mama instincts for a reason. Read, listen and observe everything you can about this, but always trust your mama instincts first. And, if there is no other advice I can give you that will mean anything, please trust this. Pick and choose your battles.... esspecially when he starts school. My son is in 4th grade.... he fails tests and he misbehaves but he reads on an 8th grade level. He finished the entire Harry Potter series in a month. The whole series. I want him to be happy and healthy. So, sometimes, if homework causes a meltdown then we just don't do it. Some might dissagree... but my son is "different" than most people's sons. And homework just is not as important on somedays. Pick your battles.... trust me. The rest will just fall in line.

    ReplyDelete
  4. OK, so great. I'm crying. That post was pretty much like watching an entire season of Parenthood.

    You're amazing. Lemme say it one more time YOU. ARE. AMAZING. Davey is amazing. You have something... something in spirit that just is so wonderful to be near - if only through a computer screen. It would only be logical that your children would have inherited this as well. May sound strange, but I am thankful for how much you love Davey (and Charlie) and that you (and Joe) will ALWAYS by their biggest advocate.

    Take that bull by the horns!

    Sarah H.

    ReplyDelete