Thursday, December 18, 2008

He just goes blissfully along.

The doctor said it Tuesday.

“Your son is autistic.”

Oh, and “he has Failure to Thrive syndrome as well.”

I expected it. It came from a doctor who exclusively specializes in Autistic Spectrum Disorder.

Our next step will be to head to the Kennedy Krieger Institute in Baltimore. I’m simply not comfortable with a diagnosis of autism coming from a specialist who deals only with autistic children. I asked said specialist if indeed he cared for any children whom were given a dual diagnosis of T21 plus autism. He does not.

There is just too much crossover in behavioral characteristics. We need to iron out the intersections and apply therapy appropriately. Needless to say, I need to take Elliot to a physician who handles a multitude of dual diagnosis cases, and one particular specialist practices at the Institute in Maryland.

While our visit will have to be delayed until the spring of 2009 due to financial constraints, I will not put it off any further than that. Masses of individuals are telling me to just blow it all off and go with the flow. I cannot follow that recommendation as I am better prepared for the future when given definitive answers…as definitive as one can get when dealing with a spectrum disorder, or perhaps lack there of. In the meantime, the Institute has forwarded a 30-page questionnaire regarding Wee E’s behavioral characteristics, his medical health history and the like. I’d rather send a video!

Well, he does not eat solid food. The local physician noted that we’d HAVE to head to Omaha to attend regular sessions at the feeding clinic. The “failure to thrive” you know.

Okay.

He also noted that we more than likely would have to employ the use of a feeding tube at night, restraining Elliot, as we force the liquid down.

No.

I don’t buy that and I will not further traumatize Elliot with the use of restraining measures simply so he takes 6 bottles of Pediasure per day. I WILL take him to additional therapy sessions and he WILL eat, but I will not restrain him in his crib at night with a tube shoved down his mouth to do it.

In the interim, Elliot is just Elliot. Happy as pie.

Elliot does not feel my heartache. He did not see his sister’s tears when the physician said “autism.” Nora associates this term with the young lad in her classroom that bangs his head in anguish and cries for his momma whenever someone approaches. She did not need to hear the physician’s words, but I could not find a sitter. Even Isaac sees it. He pats me when I cry. But…

Elliot is just Elliot. I tell myself that is what matters. My child is happy. He still loves his bath. He still stares at the Christmas tree and smiles and approaches to pull the ornaments off, laughing all the way. He still loves our white Persian cat and giggles when she paws at him. And, he still adores his red hair brush, probably forever playing with it (or something similar) in his special way. It makes him happy. I make him happy. His siblings and father make him happy. Life makes him happy. No matter what the harebrained piece of paper says, my Wee E will embrace life, because he is delighted to be here. That’s what is of utmost importance. My angel baby is happy. And…the descriptive paragraph found at the top of my blog will forever apply.

10 comments:

Rachel said...

YOU GO GIRL!!!! I think Doctors these days are to gung ho at diagnosing Autism. From the pictures and posts, I don't see that he is. I too, would not bound him to a bed to do a feeding. He will succeeed!!!! How could he not? He is ELLIOTT!!!!!! I love that kid! just love him!

You have to be one of the best mommies of all time.

Christina said...

HUGS!

Elliott is still the coolest little guy.

Jessica said...

I just want to reach through my computer and give you the biggest hug ever!

Jess @ Raising Joey

Stephanie said...

Oh Michelle! Hopefully someone can give you the answers you need.

Michelle said...

Keep up the fight Michelle! Elliot will shine through this all. Keep me posted about your trip to KKI. I would love to help you out - you can stay with us, I'll chaueffer you around:) and provide whatever support you need.

Hugs!

Melissa @ Banana Migraine said...

I'm so glad that dear Elliot has a mom that will fight for him. I completely understand needing information for what you are dealing with.

Elliot is amazing and always will be - I think he's thriving just fine.

luvmypeanut said...

Alex went to the feeding clinic here at Children's and it was a positive experience for him and me. There was no forcing of food or anything like that. In fact he came out of it eating and brushing his teeth! I would recommend it before having to go to a feeding tube etc.

I'd even be willing to head on down to Children's and meet up with you sometime!!! Well if all the ice and snow clears up!!

Merry Christmas!

All 4 My Gals said...

MIchelle, I so agree with you that you can't go solely on his diagnosis if he has not seen children with a dual diagnosis before. And I like you would need to have definitive answers and the best guidance around. You know Elliot is Elliot and will be the precious person that God created him to be, but your feelings are normal and have purpose. I wish I lived close by so that I could have babysat for you. BIG BIG HUGS. And much love and many prayers! Nicole

Imsavimsa said...

If you later will have to consider a feeding tube, please think more than twice about placing an NG-tube (through the nose). It won't get him to eat more, probably less. But a G-tube (straight into the stomach through the skin - requires surgical insertion) is a much better option. It will leave a small scar but will be much easier on your child.

datri said...

I'm glad you are going to see Dr. Capone. He's one of the few people who really understands the dual diagnosis. And he spends a LOT of time observing your kid (although mine was sleeping the whole time!!!)

Make sure you get all the forms from his research assistant WELL in advance of your appointment. They'll email some of them, but she sent some others late and we didn't get them before we left.

Are you seeing anyone else at KKI? We saw a behaviorist, which was a waste of time because we already do ABA. They wanted us to do an OT and speech eval too, but since we were paying for everything out of pocket, we declined.

If you have any questions or want to know more about this dual diagnosis thing, just email me and I'd be happy to send you my phone number.