Kai update: I think that we're nearing the end of our marathon of medical appointments. Keep your fingers crossed! What we have learned: Kai does NOT have any genetic anomalies which would account for his delays and eccentricities. Previously it had been thought by various clinicians on Kai's team that he could have had something called velocardiofacial syndrome (given Kai's misplaced carotid arteries, asymmetrical clefting, previous endocrine issues, short stature, velopharyngeal [soft palate] insufficiency and speech/learning delays.). However, genetic findings have proven this not to be the case! Time and time again the docs are beginning to tell us that they believe many, many of Kai's issues appear to be a result of his early neglect and malnutrition (see Kai's GOA story and Kai's journey/Our journey pages).
Kai is continuing to get used to his speech prosthesis, although this is still labor intensive. We've been to the prosthedontist several times to get the appropriate fitting, and back to Children's Hospital to have Kai's speech evaluated with the device in. Looks like we'll be back at the prosthedontist's office next week Wednesday again for another fitting. The good news is that his speech IS improving! He's talking a whole lot more and I think that he is really, really proud of himself. (yeah!)
Kai's awesome Easter Seals ABA Team is continuing to work wonders with him! He's making fantabulous gains all around and we're seriously all reaping the benefits of their hard work: Kai's meltdowns have decreased significantly, he's making appropriate requests using words, his play skills are fantastic (even pretend play!), and he is doing really well in all of his learning programs. We have Kai's IEP meeting in early June, and I think everyone is on-board with mainstreaming for next year, when Kai starts K-4 (with a whole lotta extra speech therapy).
Jade has been doing well in Kindergarten. Here she is at her spring concert looking like a cat... she's the one on the far right (can you tell it's a farm theme? Just look at all those cute little square pigs in the background.).
Why else have I been off the blogosphere?
As many of you know from my previous posts, the political situation here in WI has been really really hideous. Now, I've always been an advocator. I wouldn't have become a social worker if I wasn't. I think that whatever the nuns taught me in grade school about fairness and equality and the golden rule penetrated deeply and securely into my bones because I can't let injustice go. I just can't. In principle or in conscience. But then there's this:
Our governor is spearheading a huge effort to privatize the public education system ....nationwide! My husband works in a public school. Scott became a school psychologist because he wanted to make a difference in the lives of children and help kids that struggle with school. He wanted to help children with special needs to achieve their best, utilizing all of the resources available. Who woulda thunk that we'd actually have a kid like that, hey? Anyhow, Governor Walker wants to change all of that by allowing big business to have a hand in how our children get educated. Yup, big business....that's who would be buying up the charter schools, and given liberties to set all of their own standards. Take a guess.....who do you think would suffer?
I'll spare you the gory details of how great the Wisconsin public education system has been. I'll even spare you the documentation which proves that charter schools have failed to provide an education that comes anywhere near to what our public schools have done (I'm not talking about well-established parochial schools here....like the ones you and I may have gone to.)
So...yes. We are afraid for what might happen with Scott's job. We are afraid for the future of our children's education. We are particularly afraid about what might happen with special education, because we all KNOW that that's where the expenses are. With the political climate being what it has been, I'm expecting that those [our] kids will no longer be a priority. Sorry....I don't mean to be a downer. I'm just sayin. When finances are tight, who do we take it out on?
We're posed to lose our current medical insurance at the end of this contracted school year (June), which would be replaced with lord-knows. We're also anticipating a significant (about $550) montly loss of income....not to mention whatever medical co-pays or deductibles might be accrued (with two cleft-affected children that adds up quickly!).
Ah yes, and then there's medicare. Should I even go there??? This post is getting really long. Sorry folks, that's what happens when I step away for a while. For now, it looks like the GOP is starting to seal the bill's own fate. Let's keep hoping. As far as Kai is concerned, we're thankfully able to have it as a back-up. And, if our ABA services begin to incur co-pays / deductibles under whatever our next insurance might be, they would be covered under the autism waiver / mandate. WAIT....with the new budget here in WI, THAT'S at stake too! See what I mean?
What HAVE we been doing about these things?
Well, I have been trying to do a lot of educating folks. As a beginning facebooker, I had vowed to never discuss politics or religion on facebook, lest I offend anyone. BUT, What's happening in our state and our country has gotten my ire up... Like I said, I can't let injustice go. I just can't. So, I've found the internet to be a huge place to network and get things done. I've joined more groups, written more letters, given more political feedback, gone to more rallys, signed more petitions, and attended more political events than I had ever imagined. Oh yeah, and my husband did some canvassing to recall one particular senator and I did some phone-banking.
That's what we've been up to.
And I've found.....there's SO much more to be done.
We're at a point in our history where I'm afraid that the civil rights which were secured in the '60's and '70's could be overturned in an instant. My Christian upbringing and understanding of social justice says that THIS is the stuff that Jesus got angry at. When the huge powers began to loom over the sick, the disabled, the elderly, the poor, the disenfranchised and the voiceless....and to take away their basic human rights and dignities. This is the stuff that all of the prophetic voices ahead of us have railed against.
And so, we continue the effort.....These two (and my other one who is working right now) are well worth it!