>>Ding-Ding<< round one – Done.

Emma is sitting on the floor taking all 5-billion little plastic hair bands out of the box, transferring them to a small red jewelry box.  Now she’s chewing on the outside of the jewelry box, and there are 2-billion little plastic hair bands all over my living room floor [think of orthodontic bands].  Hey, at least they’re multi-colored, it’s like a party.  A fiesta-band celebration!  Did I mention that she is wearing her WEDDING DRESS that she got for christmas, today?  Yes.  The princess is here.

The queen is typing, with a nice hot english breakfast tea within inches of hand…  🙂 We’ve had a pretty decent morning.  Emma woke up and I brought her to bed with me, where she pointed at my breasts and said, “NO TOUCHING!”  Ha ha ha!  I’ve been working on getting her to hold off on the grappling that she thinks is so hysterical, leaving me red-cheeked and frustrated.  This is the first I’ve heard of her interpretation or understanding that I might not appreciate the attention.  🙂

*brb*Well, the hair bands just got thrown all over the floor, so I went and picked them up.  Kind of.  There’s an assortment of dog hair, sawdust, and bits of floor stuff in there too now.  Ugh.  *brb*Dora is now out of the car and into the home dvd player.  I also grabbed the remaining powdered mini-donuts from our car trip.  😀  Okay, now I’m ready to WRITE!

Tuesday: we left at 4:30 am for Denver.  Item one: Meet with Dr. Van Hove, Pediatric Metabolic Specialist. Results: None, follow up in three years for another basic panel to see where bloodwork is at. 

All of the tests that were performed came back negative, which is positive, meaning that everything is normal, which should make us happy, but really it was sad.  🙂  Somewhat.  It would be nice to find out some basic underlying problem that could be cured with a pill, but I guess it would also be rather anti-climactic after all this excitement we’ve had lately.  The Dr. said that  he has no doubt that there is an underlying metabolic condition, but being that she has no other physical manifestations right now, it doesn’t warrant further testing.  If there is a sudden deterioration of anything physically or otherwise, then we will re-address further investigation.  He said that most likely whatever it is will eventually become more apparent, as all metabolic conditions worsen over time.  However, it could be 2 years, 10 years, 50 years, who knows?  We have put it to bed.

Then we did some shopping.  Reserved our regular hotel room.  Ate at the Olive Garden.  [Yum!].  Went to bed, and all was well.  Overall it was one of the better trips as far as Emma’s behavior is concerned.

Wednesday: Arrive at the Developmental Clinic at The Children’s Hospital, 8am sharp.

A summary and brief regurgitation…

Testing with Emma directly was around 3-4 hours.  Then, there were interviews of all sorts, and general discussion regarding results.  Emma was in a decent mood throughout the testing and etc, but it took soooooo much effort to keep her happy and engaged.  Overall, I really believe that she gave them her best, and that she performed accurately as well.  However, the process and dealing with her was so exhausting that it left B. and I feeling like we were hit by a truck.  The team is WONDERFUL.  I feel incredibly lucky to be able to work with such a caring, knowledgable, thorough, and capable group of specialists.

The general results [which I’ll outline further when I receive the written reports] were consistent with what we had thought.  They did move her from a diagnosis of PDD-NOS to Autistic Disorder, and we received our medical waiver, or “Long Term Care Professional Medical Information” form.  This gives us our diagnosis in official form, which is useful for insurance, SSI, and other benefits. Specific results came back low in all areas, but I don’t remember the figures.  They ‘weren’t good’, but those things don’t bother me as much anymore.  Really, I guess I’ve accepted that my child has a disability, and it is what it is.  I’d rather know exactly where she is, to gage how to best help her and build on her strengths.  Anyway.  Like I said, more on the specifics at a later date.

We had good conversation with the doctors about the biomedical/alternative treatments that are popular within the autism-community.  The advice given feels right-on.  Basically, they recommend we spend our time, money and energy on the treatments that have been clinically documented to benefit children with autism.  With whatever is “left over”, feel free to experiment with the alternatives that are safe.  [There are treatments that cause more harm than good]  On a note, Studies have still failed to prove that a GFCF diet improves autism at all.  Most recently, Princeton performed a very careful and detailed study in which  children were fed completely identical foods, some GFCF, others ‘normal’ [placebo].  The results showed absolutely no difference between the two groups with any autistic characteristics.  I was happy to hear this, because I honestly do not feel that I could realistically incorporate that change into our lives.

We’re working on creating a new bedtime/wakeup schedule, and are going to continue focus on getting her sleep cycles fixed.

The doctors told me at the very end of our visit that although they think Emma is very very cute and sweet, they can tell that she is very, very challenging and difficult to deal with; Terry’s been performing these tests for years, and rarely is there a child that makes the process as challenging for her as Emma did.  Then, they both told me that I am an absolutely excellent mother, and they are extremely impressed with how I handle Emma and my strategies.  Over and over, they said that, and that they don’t tell that to every mother that comes in.  It was fantastic; there have been times lately where I feel like she is going to drive me over the edge, and no one else seems notice the insanity I have to go through to function with her.  Family and friends rarely see picture in its entirety, and also don’t know how to see the invisible hoops I jump through on a minute-by-minute basis.

I asked if they would put it in writing for me.  [[grin]]

I don’t think they will.  But the positive feedback from those dedicated and experienced professionals was not only nice, but necessary.  I know that all mothers doubt their parenting, constantly questioning if they are really living up to their full ‘good mother’ potential…  I think with a special needs child, the pressure to perform is amped up a level or two.

Anyway, I’ve momentarily exhausted my verbage about Emma.  Phew.  Happy days to all you readers! ❤

Advertisements

11 thoughts on “>>Ding-Ding<< round one – Done.”

  1. I’m so glad you got that feedback! Isn’t it funny how the weight of what a total stranger says is sooo important?! This parallels our conversation about how check out line people need our kind words/attention.
    Anyway, I’m curious to hear about what the official results say, as a nosey sister should be… 😉

  2. I LOVE that dress on her. She needs the tiara on though – it completes the outfit. I am happy to hear that the dr’s told you that. Because I know how important it is to REALLY FEEL like you are a good mother. No, I don’t have children with disabilities, but the divorce has made things VERY trying. So, maybe I do understand…. in an itty bitty way. 🙂 I wish that I were closer, so I could see those little hoops that you jump through. So that like I did with Trent last night, I could give you and B a quiet relaxing evening. I love my neice and nephews, and I wish I could spend more time with ALL of them.
    BTW – I really appreciate this blog. Because even though we may talk on the phone for a long time, not everything is talked about. And this gives me more of an insight on you and what you are going through.
    And just as your other nosey sister said…. I am curious about the official reports as well.

    1. Thanks! I wish you lived closer and could interact with us more too… Thanks for reading, and you aren’t nosy, you just care. 🙂 Nosy would be asking how this all affects my personal life 😉 😉

  3. Sooo proud of you! It must have felt so awesome to have some validation and appreciation that you are a super mom… and u r doing MORE than “the best a parent can” Even better, this came from pros who CAN understand the challenge you face and KNOW the real picture of what it can b like! Wow.. it seems like theyre saying u r the best person to help Emma through this… and id be willing to bet god knew this when he set you up together… I dont blame u for wanting it in writing… it makes ME proud to read what they said again and again.
    Also must be satisfying to see the diagnoses becoming a bit more sound and feeling like .. while the journey is far from over… you at least understand with more certainty, about the road ahead.
    Last but not least, 3 cheers for debunking speculative remedies that will only complicate life with no results!

    -Techman

  4. id be willing to bet god knew this when he set you up together
    Ha! Yes, Techman, I think I said this last week, too. 😉

  5. Daleth,
    I am glad that you received further validation that you are a good mother. I am also glad that you got a refined diagnosis – that will help. Oh, and Emma looks VERY cute in her new dress.

    Talk soon,
    jp

  6. day, with everything going on in your life, it’s such a wonderful validation for you to reap what you are sowing at school. (as you put it to me on the phone last week).
    i missed emma’s reactions or lack there of at christmas. in a way, i think it best that i did. we might have cried on each other’s shoulders if i had.
    emma’s world appears to be a happy one. she takes care of her babies, and enjoys being physical. she’ll hug and kiss when and who she wants, this is ok in my books.
    talk to you soon. much love

  7. “Those invisible hoops I jump through minute-by-minute” –perfectly worded for those of us who deal those outside normal interactions. Feels like constant survival mode on steroids or hopping on a pogo stick in a mine field where you think you know where the mines are, but someone keeps moving them. Your considerable brain power, insight, and wit are fully engaged with Emma, which is draining as hell, I know, but thank God your family and Emma have you!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s