Friday, January 22, 2010

Innocent Bystander

I have one child with autism and one child who thinks he does.
In my field of work as an Antepartum nurse, we will occasionally see a mom pregnant with a set of twins. One twin is severely "ill" and one twin is doing just fine. She's at a gestation where if we deliver now, both babies have a chance of survival, however, we are subjecting that healthy twin to a premature delivery and all the consequences that go with it. If we choose not to deliver, the sick twin will surely die and the healthy twin has a chance to remain in utero and deliver at term. Some choice. It's one that I pray I never have to make.
In some ways, I can relate. We have a difficult life at the moment. M has therapy 33 hours per week in our home and he also goes to half day of school. That means 3 hours of therapy in the morning, school for 3 hours, and 2-3 hours of therapy after school. This goes on 6 days a week, my friend. It's been like this for a year now. The year before, we financed to provide 12 hours per week of therapy and of course, half days of school.
C misses out on all the playdates, outings, and extra's that come along with having a mom who doesn't work during the weekdays. There is no museums, play galleries, or zoo for us. There is an occasional playdate here at our home, but everyone will always have to come to us, for we cannot return the visit. Living in the country does not help our situation. We can't walk out our door and run into other families to socialize with. For now, we live vicariously through our firends and aunties. That's ok. We know the sacrifice we make for M as a family will reward us later. C doesn't know any better. This is the only life he knows. Admittedly, it is more my problem of feeling like a caged animal and wishing to give him the opportunities that other children his age can have. He is the innocent bystander.
All these things I can deal with. I know that our situation will change in time. I just have to be patient.
The more difficult thing is that M and C are each other's only consistent playmates. M's mannerisms, perseverating, tantrums, and play style are quite different than those of a NT (neurotypical) child. M also has a lot of anxiety and rigidness. C's only exposure is to his autistic brother. So he picks up on all those not-so-admirable behaviors. The innocent bystander.
Some days it feels like I have two autistic children. This year C attends preschool two mornings a week which is his only saving grace. I can hardly wait until he can go to 4K where I can see him blossom into what he's really going to be.
The innocent bystander no longer.

No comments:

Post a Comment