katydaqueen: (family)
 There is a current grassroots effort to send an empty envelope on April 10th to the governor and your legislators.  On the back of the envelope print or write this:
"This envelope represents one infant, child or adult with disabilities whose life will be critically impacted by budget cuts. This envelope is empty because it represents what the lives of people who are vulnerable will be like without the support they need to live with dignity and respect. It also represents the emptiness that our communities will experience without the inclusion of people with disabilities. Sad... lonely... empty. Is anyone listening?"
 
Please pass this on.
katydaqueen: (Default)
When Konal first started having difficulties, I started looking for answers. Intuition told me that there was more than met the eye involved. We have had consultations, specialists, test after test that would leave us both in tears. You could tell me tomorrow he has a brain tumor, and I would probably deal with it better than what we have. We need to know what we are dealing with, instead of this constant round of finding yet another thing wrong. Konal is picking up on this. When he was tested for Wilson's Disease, I was informed by one of his teachers that he was talking about it like if he had it, everything would be all better. And when the tests were inconclusive? I think our hearts just broke a little bit more.

So, as part of this continual quest for answers, comes this new study:
As a mother who hangs on every word, I just wanted to say, "Thank you, researchers and scientists" Because you keep trying, we have hope.
katydaqueen: (Default)
Storytime edition:

Once upon a time, the internet was this new, unexplored territory. I mean, wow! Anyone could get a site if they wanted one. So, I started with a Geocities site, then worked my way to my own domain name. I have not looked back since.
Part of the early site was when I was really trying to do something meaningful on the web. I wanted to have an impact and be known for something more than just being a stay at home mom and a college student. I had pages on attachment parenting, cloth diapering, breastfeeding, and many others. I joined online forums. In fact I was in an AOL parenting forum while in early labor with Aidan. I made friends, I made enemies, and I made mistakes. It was like adopting a whole new culture.

But that is not what this particular entry is about. This entry is an update to this. Go, read it- I will wait.


And yet, I am tired. I am worn thin, and am not sure how to deal with it. I would let others in and have them be a support, but they often don't understand what is going on. Having to continually explain it makes me feel so alone sometimes. Chris is a wonderful support, and I know he is getting it, but he is also concerned, frustrated, and feels powerless when things happen. I know that my friends are unsure what to do to help. I know society has no clue, and would rather write him off as someone who can't be helped. What can our family, friends, neighborhood, community, & society do?



Thanks to the Punjab Patty wedding, I was introduced to a Social Distortion song that brings me to tears. (pop up warning)



Konal says I am the strongest mom he knows.
Sometimes I wonder...
katydaqueen: (Default)
Catching up...  as always, if you want up to the date bloggage, check out my site.

Today was a day on the run, and run I did. Cleaning, working, meetings, and more.... I am behind on e-mail and blogs, and tomorrow guarantees the same.

I have a small rant about the State of Arizona's social service system. It is very fragmented and difficult to navigate. Konal receives services from Behavioral Health via his eligibility by being on the state form of Medicaid, called Arizona Healthcare Cost Containment System, or AHCCCS for short. He meets the federal definition of Developmentally Disabled, but not our state definition. DDD is the only non income dependent health program our state really has. This is why I made the choice years ago to quit working. I was making too much, and private insurance can not provide the services we need.

The problem, besides the confusing nature of the system itself, is that Behavioral Health is built on a time limited, fix the child and get out philosophy. It is not set up for long-term, chronic issues.

We had a meeting today, and were told that the agencies are receiving pressure to correct the safety issues in the household and get back out (called transitioning)

I do not see this happening. I am afraid that during Konal's next better cycle, they will declare him "fixed" and withdraw the in-home supports. I hate to say it, but I foresee another system taking over at that point.

This system receives a very high percentage of the children receiving behavioral health services in AZ. It is a way to warehouse "problem children" who may have been helped if the other systems were better.

What is this system, the one I see my child being in if I don't keep fighting tooth and nail?

The Department of Juvenile Corrections.

And if the issue is bad enough, the Office of Corrections.

Why spend all this money to warehouse a child that money in the beginning could have prevented?
katydaqueen: (Default)
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

April 2009

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