Friday, January 26, 2007

(Continued...)

ALPHABET BOY

Before I can rip him a new one, the doctor tells me, "We've waited long enough. It's time we have this boy thoroughly evaluated. I'm going to send you to Emmanuel Children's Hospital."

Never has it felt so wrong, to be so right. I just wanted him to tell me that indeed, this boy cried too damn much, but that he would out grow it. I did not want to hear he needed a thorough diagnosis from a children's hospital.

The appointment is made. My husband and I take our boy to the best of the best, Dr. Budden. She has a reputation for uncovering every possible cause for every possible problem, and quickly.

We spend 90 minutes with the woman. Our boy fusses, twists, cannot get settled the entire time. She looks him over head to toe, asks us a million questions, in addition to the million we've already answered on all the forms we've completed.

"He is completely flat footed. He needs to wear orthodics. That will help him with the walking and balance.

He has moderate to severe dyspraxia - poor motor planning/firing of information from the brain to the mouth.

He has low muscle tone. He needs to see a physical therapist.

He has moderate to severe auditory processing disorder (APD) - poor communication between what he hears and what he understands.

He has moderate to severe sensory integration dysfunction (SID). What his eyes, ears, mouth, nose and body senses is extremely disturbing to him, he is not able to process it effectively.

He probably has ADHD, but we will want to hold off on that right now.

His pectus excavatum ("sunken chest") may be putting pressure on his heart and lungs. We need to have that x-rayed to determine if that's the case.

You need to get in touch with Portland Early Intervention Program (PEiP) and have them evaluate him for services.

You need to call this physical therapist, that speech pathologist, this occupational therapist and that pediatrician."

In 90 minutes we've I've gone from being the lone voice, trying to convince others there is a problem, to being inundated with facts that prove me "right." Hearing PEiP is particularly disturbing. Must be the water in NE Portland. Everyone I know that was having children around the time I was, ended up in PEiP. PEiP is not where you want to land. Ideally early intervention changes the trajectory of these child, and I believe it can. I've never seen a kid from PEiP move from the "Special Needs" category to "Neuro-Typical" category, though. Never. They improve, they are never cured.

Stunned we leave the office, obligatory "Thank yous" and we go home. Home to where our new lives begin. Home to where we cannot live in denial for one more minute. Home to where the two-year-old lives, too, for whom we must maintain our composure. Home to where I manage the chaotic estate of my recently deceased father, long-distance. Home to where we have already broken ground for a new house and are in the building process, acting as our own general contractors. Home to where my husband has told me he plans to leave his job, work from home, do his own thing. Home to where I have no choice, none, but to put one foot in front of the other, indefinitely. Breaking down will have to wait. Right now I must go home.


8 comments:

Terry Whitaker said...

Wow, It's so much more real when you write it than it even was when you were going through it. Probably due to the physical difference we had at that time and the delerium you were communicating through. Unbelievable. I still can't get over your strength.
More.

Jerri said...

Incredible.

Still hungry for more. And more. And more.

love.

holly said...

you are so strong and inspiring. i love reading this story.

Suzy said...

Putting one foot in front of the other is like playing "Giant Steps" with no feet. A-fu--king amazing you are!

jennifer said...

Great work! I know that I keep saying this over and over but it's true. This is real and honest and horrible and when you add your remarkable humor and open it up, it's BEST SELLER!

Nancy said...

Wow Carrie!

You are so amazing; both your writing and your strength.

Dawn said...

Hi I'm a new blogger travel thru ..You struck a cord w/me ~ my eldest daughter is MR teenager or rather "developmentally delayed" she never slept after age 4 !!! Now unfortuately tks meds fro this. THERES NEVER A GOOD TIME FOR A BREAKDOWN ... things are alot better now ;) still hard but different & better. My son only 9 got diag type1 diabetic recently also ~ this sent me thru the internet like never before! Theres really a GREAT bunch of people out there full of strength ideas & encouragement. Just remember under every moms dirty tshirt lies a cape! LOL

Anonymous said...

Love that boy!!!

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