Nickie is starting to catch up with me on posts, so I figured I better get going. In case you hadn't noticed, Nickie has been the author of several posts. We are both spiritual people, but she, as with all her emotions, wears her faith on her sleeve. I very much admire that quality about her. I am a little more guarded about those things. No particular reason, that's just a personal trait, just like my tendency to use humor in all situations, and generally to think that all things in the world revolve around my thoughts or actions. Think of all the good jokes you have heard lately. I made those up. All the new trendy things out there? That's me. The Bud Light "Whassssup!?" commercial? My idea. (Barack Obama? I was taking that day off.)
But I digress. Regarding spirituality, I do believe very strongly that William was a blessing from God. I have often questioned why we had so many kids so fast, and why each time was such an ordeal. (Each pregnancy was extremely difficult...another story) I think God was preparing us for the hard times ahead, and giving us our own support network in the form of siblings. I don't know if William will go to college, or have a job, or ever get married, but I do know that he will always have parents and 3 siblings who love him dearly.
So, if you're reading a post, and it is generally very introspective, and uplifting, odds are that Nickie wrote it. If it involves crude humor, nudity, or stories about me, then guess who?
I did some reading back through some old posts, and I am realizing that I have gotten away from what the intent of this blog was. Me. Okay, so I am kidding....but only partially. My point is that there are a bunch of web sites out there talking about what to do for William, what therapy he needs, what diet he needs, but nothing talking about what Nickie or I need. Suffice it to say, we have been going on a wing and a prayer, flying by the seat of our pants for the last 3 years. Surprisingly, there is no manual for how to deal with kid once you catch up to him down the street riding his big wheel naked. Not a snippet on how to deal with the looks you get when you are dragging a naked screaming kid and his big wheel down the street, muttering some words you shouldn't say in front of any kids.
On a related note, William got in the habit of shouting out the "F" word every time we walked by the baby section in Target. I said it ONE TIME at that EXACT SPOT, and for the next year, he shouted it out as loud has he could every time we passed by. Not a quick shout either....he shouted with passion, verve, and intensity that would make any Broadway actor proud. "FFFFFFFFFFFUCK!" Over and over and over again. This would mean I would have to sprint past all the moms with the darling little children just there to peacefully buy some diapers or a binky. This also happened in the post office, waiting in the Christmas line to mail a package. The postmaster's response was "I bet Grandma is real proud."
Okay, a little tangent there...
The latest is that there are lots of subtle little changes still happening. William is doing puzzles (for 3 year olds), and insisting on "doing it all together", meaning he wants me to play too. I enjoy this immensely, because I am feverishly praised by William when I put pieces together. (I get the same praise when I go to the bathroom. I have no memory of my own potty training, but I suspect this is what it's like. "Good Job, Daddy!" My self-esteem is at an all time high.)
So, things are good. Lots of work to do still, we are running 100 different directions at all times, but it's crazy what you get used to.
I also want to thank everyone who has sent notes of encouragement and support since we started this whole operation. We truly love and appreciate you all. You know who you are. (I won't mention any names, because, after all...it's all about me.) In all honesty, the encouragement and positive feedback sustains us more than anything else. I got an exceptionally nice note from a friend from Junior High today and I think it will last me a month.
Wednesday, November 12, 2008
Wednesday, November 5, 2008
Amendment 51
The grassroots effort of Amendment 51 did not pass yesterday...I am truly saddened by this. I wonder where we go next.
My perspective as a parent fighting for the rights of my child is not unique...I want what is reasonable and is necessary. When your child has special needs, sending him to school and signing him up for baseball just isn't enough. The need for training in socialization, unique nutritional requirements, significant medical attention, directing dangerous behavior, regulating infantile reflexes which prohibit physical development, facilitating an avenue toward receptive and expressive language...are just a few vital needs of these children. The reality of "necessary and reasonable" daily needs, stretches far beyond what most people consider an exhausting, and financially troubling day.
That's where my frustration with the defeat of 51 comes in. You do anything you can for your baby. Interestingly, Colorado offers phenomenal services...but the costs are astronomical. The wait to receive support through a Medicaid Waiver can take years and years...meanwhile these children either miss their "window of opportunity" or the families deplete their life savings paying thousands of dollars each month for therapy, or the family moves to a state which financially supports their child's special needs. Colorado is currently #48th in the nation for funding those with special needs.
I don't know if voters didn't understand the wording, didn't care, or were so blinded by headline news leaving this issue insignificant on their list of priorities. Perhaps they didn't realize the tax-increase of pennies on the dollar, would not pertain to gas or groceries or their electric bill...but rather on luxury purchases that a truly financially strapped family would not be participating in, anyway...like dining out and purchasing a new sweater at the mall.
Here are two letters on the subject I especially liked: http://blogs.denverpost.com/eletters/2008/11/06/amendment-51-defeated-2-letters/
Well, here again, the lesson I've learned is that I cannot control much...if anything. I can do my part: I can be thankful for our amazing therapists, I can cherish our dear friends and family who have stood by us through our financial and emotional crisis, I can appreciate the humility of asking for and then receiving help, I can continue to pray for guidance, I can keep talking about this issue.
We are blessed, we are truly blessed. I only wish more families could be cared for as we have been.
"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Therefore, as we have opportunity, let us do good to all people, especially to those who belong to the family of believers." Galatians 6:9-10
My perspective as a parent fighting for the rights of my child is not unique...I want what is reasonable and is necessary. When your child has special needs, sending him to school and signing him up for baseball just isn't enough. The need for training in socialization, unique nutritional requirements, significant medical attention, directing dangerous behavior, regulating infantile reflexes which prohibit physical development, facilitating an avenue toward receptive and expressive language...are just a few vital needs of these children. The reality of "necessary and reasonable" daily needs, stretches far beyond what most people consider an exhausting, and financially troubling day.
That's where my frustration with the defeat of 51 comes in. You do anything you can for your baby. Interestingly, Colorado offers phenomenal services...but the costs are astronomical. The wait to receive support through a Medicaid Waiver can take years and years...meanwhile these children either miss their "window of opportunity" or the families deplete their life savings paying thousands of dollars each month for therapy, or the family moves to a state which financially supports their child's special needs. Colorado is currently #48th in the nation for funding those with special needs.
I don't know if voters didn't understand the wording, didn't care, or were so blinded by headline news leaving this issue insignificant on their list of priorities. Perhaps they didn't realize the tax-increase of pennies on the dollar, would not pertain to gas or groceries or their electric bill...but rather on luxury purchases that a truly financially strapped family would not be participating in, anyway...like dining out and purchasing a new sweater at the mall.
Here are two letters on the subject I especially liked: http://blogs.denverpost.com/eletters/2008/11/06/amendment-51-defeated-2-letters/
Well, here again, the lesson I've learned is that I cannot control much...if anything. I can do my part: I can be thankful for our amazing therapists, I can cherish our dear friends and family who have stood by us through our financial and emotional crisis, I can appreciate the humility of asking for and then receiving help, I can continue to pray for guidance, I can keep talking about this issue.
We are blessed, we are truly blessed. I only wish more families could be cared for as we have been.
"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Therefore, as we have opportunity, let us do good to all people, especially to those who belong to the family of believers." Galatians 6:9-10
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