More medical moments

Dr. A, pediatrician extraordinaire, has agreed to take Ian on as a patient. The first thing he is prescribing is a sleep study, which we will do this evening. One reason for the study is to determine if Ian is at risk for OSA, or obstructive sleep apnea. The second reason for the study is to get an accurate measurement of Ian's breathing patterns and the volume of oxygen he is processing.

The second course of action Dr. A is prescribing is begin RSV (Respiratory Syncytial Virus) injections, beginning this Thursday. This is to prevent any possible respiratory infections that could do long-term damage to Ian's lungs. These are specialized shots that require a doctor to be present to administer them (at least the first dose).

Our PT and case supervisor visited again last week to finalize Ian's program: The physical therapist will visit once every other week (at our request) and the occupational therapist will visit once every other month, at least until Ian requires more care. This program can be amended at any time if we feel like Ian is falling behind in some areas.

He is smiling a lot these days, and is able to sit (with my support) without looking like a boxer who is trying to dodge a hit. He's beat me in 8 out of 10 arm wrestling matches, although I think he's cheating. He shouldn't be allowed to smile during a match as it is a distraction and I lose my composure.

Sneaky little bugger.

Goodbye to Self

(I came across this article while reading up on therapy. It disturbed - and challenged - me.)

Where is the child in all this? The unique individual who came into the world expecting a fanfare and champagne, only to find tears and disappointment?

For a disabled child the world can seem very strange indeed. Lots of adults paying attention to "something" of which the child is completely unaware. The child's sense of self always includes what others call their "impairment" as an integral part of their being. The only "them" they have ever known. If they are in pain, they probably want it to stop. But apart from that, the child is like any other, driven to learn and become itself - a whole, new person with a body, mind and soul.

A disabled child, even with major difficulties in moving, speaking or processing information, will seek to gain control over self and the environment according to their own inner motivation. Through endless interaction with others and the material world, through play and experiment, trial and error, laughter and tears, every child develops their personality, skills, and sense of belonging in the world. When other people assist the child to initiate interactions, the child learns to expect co-operation from others, and confidence in her/his self. Play and therapy are not the same thing. Play is about the child's goals, therapy is about the adult's goals. (emphasis added) The more impairments a child may have, or the greater degree of those impairments, the higher is the level of professional intervention, the less will the child "play" and the more they will be directed by others - and the less ability will they have to protest or get away!

Many "programmes" for young children involve forced manipulation of the child's limbs for several hours a day, by adults the child may not even know. It is difficult to know how the child can cope with this without "shutting off", going numb, or giving up in some way. The "medical" model of disability attacks ones' relationship with oneself because the assumption is made that the impairment is the enemy, but in reality the impairment is part of the person, and only the person can themselves choose to separate them without feeling torn apart. So uninvited intervention, however well meaning, is a form of violence to the inner being.

Micheline Mason

"In delay there lies no plenty..."

To therapEE, or not to therapEE, that is the question.

Annie and I never got around to talking about Ian and his therapy program. Judging by the comments I got on the subject, there seems to be no shortage of conflicting opinions. I suspect this is a good thing, to have weighty views on both ends of the seesaw. "Sweet are the uses of adversity."

Some of the things we can do for Ian are common sense things, like lots of tummy time, helping him remember how to roll over, introducing baby food when the time comes. "There needs no ghost, my lord, come from the grave To tell us this." Other issues might call for professional help, like therapy for various types of muscles (such as what Steve brought up in his comments dealing with certain muscles in the mouth).

All of the doctor's who have seen Ian have remarked on his strength and developed muscle tone. "Robust grass endures mighty winds..." Based on this, I think we're leaning toward having the physical therapist come once a month. And as far as the occupational therapist is concerned, I still need to be educated as to what kinds of things Ian could learn from him/her.

Thats where we're at. "If I chance to talk a little wild, forgive me."

PRO-Active

Enough of you are writing in concerning my previous post to make me second guess myself. My natural predisposition is to assume that everything will work out fine in the end. I'm quickly learning that those days are long gone.

I'll talk it over with Annie this weekend and make sure Ian is getting what is the absolute best for him. Thanks everyone for your comments and for helping a dad get off his duff and being a little more proactive.