Tuesday, August 01, 2006

M.D. ≠ Medical Doctor

Multiple diagnoses. M.D. It's our reality. Before the big eye exam on Monday, TT had the following diagnoses:
- Pediatric anxiety disorder verging on obsessive compulsive disorder and with oppositional defiant features
- Sensory integration dysfunction (complex)
- ADHD inattentive

and now we add 6 vision-related titles:
- binocular vision dysfunction
- accommodative dysfunction
- ocular motor dysfunction
- visual memory impairment
- visual perception impairment
- eye-hand coordination impairment

ones we've conquered/addressed to great results:
- pediatric sleep apnea
- pika behavior issues

ones we've ruled out:
- Tourette's syndrome
- Autism spectrum disorders

ones still under consideration:
- bipolar disorder

I feel the need to list this all out - not to whine or gain sympathy. Rather, I do it simply to attempt to put my arms around it all. Today feels particularly staggering. We're now facing nearly a year of intervention for the vision disorders. I am very thankful that the technology and knowledge exists so these interventions can be attempted. The doctor holds out great hope (at a great financial cost...), and I want to believe that this time the interventions will make more difference than they've made in the past. It's tough to remain optimistic when everything we try has some, but not highly significant, effects.

TTs behavior since we returned home this afternoon has been edgy and volatile. I'm tired and his debates and assertions are always tougher to tolerate when I'm tired. It fascinates me how TTs little body could be woven together in such a way to hold within it so many complexities. Isn't the human body complex enough? Does a 7 year old really need to carry around the additional burden of over 9 diagnoses? Why don't we just lump them together into one diagnosis: Tristan syndrome or something catchy like that? I think 9+ diagnoses should be enough to qualify for one's own named disorder.

The hardest part of being a special needs parent, for me, isn't living with his behavior spikes or volatilities. The hardest part is watching him struggle. During the 3 hour vision assessment on Monday, I watched from behind a 2 way mirror/glass observation room (he couldn't see me, but I could see and hear him). I watched my little boy struggle and try so damn hard. I watched him become desperate as he perceived he couldn't perform the way he wanted to, and I saw him rub his eyes, lay down his head and sigh. I watched him (with great pride!) vocalize kindly when he'd reached his limits and needed a break. But even with the proud silver lining, his struggle is the toughest to watch and experience...no doubt about it.

1 comment:

Tara Ulrich said...

My dear friend, I wish I could physically be there with you right now. I know it was hard to hear all these diagnoses. TT is an amazing kid and Im so glad I got to meet him. I know its hard to deal with his many diagnoses etc but God has given you such an amazing gift in this child. Know that no matter what I am hear for you if you ever need anything. Also know that I may not know what its like to have a child with bipolar but I have dealt with the illness but I know you know that. Just know, my friend, you are always in my thoughts and prayers and even though Im not there physically, from miles away, Im holding you up as you deal with these MDs.