katydaqueen (![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
katydaqueen) wrote2007-11-02 12:06 pm
katydaqueen) wrote2007-11-02 12:06 pm
Entry tags:
NaBloPoMo- Day 2
When I left off yesterday, I promised to address the question of "What about when he is older and bigger?"
Cross-post from Krista's Thoughts
That question, or some variant thereof, is frequently asked of me when I am talking about my older son. Konal is now 13. He has an alphabet soup of diagnoses, including Early-onset Bipolar Disorder with Psychosis, a rule-out of Schizoaffective disorder, Gastrointestinal issues, Renal issues, and a processing disorder.
We have been dealing with all of this since he was 3. Our household is one of carefully managed chaos, with incentive charts, In-home support staff, Dr's appointments, Therapy, and of course, dealing with rage episodes, anxiety, and other symptoms.
You either know what I am talking about, which means you have been intimately involved in a household with a special needs child, or you have no clue. You may think you understand, but honestly, you probably don't. The only way to comprehend is to be involved in the day to day. That sounds a little harsh, but I have dealt with far too many people who thought they understood our family who really don't.
And so, we come around to the original question: "What about when he is bigger and older?" This question gets to me- every single time. It conveys an hopelessness that I refuse to indulge in. I am practical, but these are issues that do not need to be addressed until they come up. Konal is an intelligent, loving, sensitive young man with a lot of positives. When I think of the future, I think of those positives. I think of him going to college, and using his skills in a way that is fulfilling for him.
This creates an atmosphere of hope for the now. This allows us to keep working on goals with high expectations for Konal. It allows me to stick to the philosophy of home and community care as the best for him. It allows me to see past the injuries, attacks and holes in the wall, and gives a reason to continue.
Because the alternative is just not something I am willing to consider for any child.
And that alternative?
Giving up.
----------------
Now playing: Duran Duran - Come Undone
via FoxyTunes
We have been dealing with all of this since he was 3. Our household is one of carefully managed chaos, with incentive charts, In-home support staff, Dr's appointments, Therapy, and of course, dealing with rage episodes, anxiety, and other symptoms.
You either know what I am talking about, which means you have been intimately involved in a household with a special needs child, or you have no clue. You may think you understand, but honestly, you probably don't. The only way to comprehend is to be involved in the day to day. That sounds a little harsh, but I have dealt with far too many people who thought they understood our family who really don't.
And so, we come around to the original question: "What about when he is bigger and older?" This question gets to me- every single time. It conveys an hopelessness that I refuse to indulge in. I am practical, but these are issues that do not need to be addressed until they come up. Konal is an intelligent, loving, sensitive young man with a lot of positives. When I think of the future, I think of those positives. I think of him going to college, and using his skills in a way that is fulfilling for him.
This creates an atmosphere of hope for the now. This allows us to keep working on goals with high expectations for Konal. It allows me to stick to the philosophy of home and community care as the best for him. It allows me to see past the injuries, attacks and holes in the wall, and gives a reason to continue.
Because the alternative is just not something I am willing to consider for any child.
And that alternative?
Giving up.
----------------
Now playing: Duran Duran - Come Undone
via FoxyTunes
Cross-post from Krista's Thoughts
no subject
However, I can see the logic. If you put some sort of ambiguity to his future or even something defeatist (regardless of its potential reality) like "he'll go to a home" etc, it will seep into the day to day life and he won't have the hope. Focusing on positive goals only makes everyone in your home work harder to make sure those good things come to fruition. And if situations in the future arise that are converse to the goals you've set, you re-evaluate what goals you can accomplish that are still positive ones.
You're awesome, you know.
no subject
The encouragement and empathy from my circle of friends and family, including those oh-so-special family by choice is a critical ingredient to my sometimes frayed coping skills.
no subject
Also, you just rock. :) I've never met your boys but it sounds like you have a great family.
no subject
Thank you :) I need to be reminded sometimes...