...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Wednesday, August 25, 2010

Excuse Me????

I would have titled this post, I Beg Your Pardon? However, that would have been a gigantic misnomer, as I will not now, nor will I ever be begging anything, much less pardon, from the woman who is the source of my ire.

As I re-read yesterdays' post, I found myself getting angrier and angrier. Had I called a spade a spade yesterday, I would have thrown Miss F out on her ear after Beth arrived. Certainly after the first, "We need to wrap this up" went unheeded. Why I let the two of them run over me is beyond me. Maybe it was my fatigue, my three day headache, or the high I felt from shooting down their line of BS excuses every time it reared it's ugly head. I just hate it when people either do something wrong or fail to do the right thing, and then try to lay the blame at the one who was wronged. I was also a little ticked at myself. So while I was still sufficiently pissed, I decided to take the bull by the horns and call Miss F, rather than wait for her to call me.

First I had to dial all the wrong contact numbers for Miss F listed in The Olders' folders. Then I tried her cell phone, left a voice mail, which I assume will remain unanswered due to her broken phone, and then realized that she wouldn't respond anyway. So I called our SC at RC and left a brief message for her, then I called Miss F's agency directly. While I was on the phone with the receptionist, I wrote the names of her supervisors on The Pods header page, just in case this situation sizes up the way I think it will. Next I was told that Miss F was not in the office today and I was transferred to her voice mail at her office. Only - surprise - she answered!

So I said who I was, asked if this was a good time and then asked what she had wanted to discuss with me yesterday. She put me on hold. I think she was gathering her wits, deciding what she wanted to say. Outlining her attack. From my previous dealings with her, I know she is not in the habit of being vulnerable and I firmly believe from my experiences in life and with her in particular that she is much more comfortable being the aggressor in any confrontation. She likes the upper hand and since I called her, she had lost the position of control.

So, when she finally came back on the line, she made some small talk. I wanted to get to the point and asked her again what she wanted to discuss with me yesterday. First she said that she had, "Spoken to my supervisor about this case. I'm trying to get another staff out there for you. It's going to be a difficult task, considering that you've given us such a rigid and limited time frame to work with." Wow. She's good. Tried to put me in my place right off the bat for being so difficult. So I said in a very nonchalant tone, "Well you've already succeeded in finding 6 therapists so far, and this has been the time frame for the entire year you've been in our home. In fact, from what I understand, this is the typical time frame for the average school aged client that your agency provides services to. At any rate, I'm sure you'll do your best." She made some end-of-call comment designed to stop conversation and get the caller off the phone. You know the ones: alright then, I'll be speaking to you later, okay then.

So I asked again, what it was she wanted to discuss with me yesterday. It went something like this. "Well I had some concerns about the way you handled things yesterday. I was concerned that you chose to air your grievances at the team meeting when your children were present in the home. I think it would have been much more prudent to the children's welfare to discuss this with me privately instead of just blurting it out in the open like that. I thought the way you handled the whole situation was very inappropriate. I was very offended by that." Wow. Bring on the buzz-words. Concerns. Things. Chose. While your children were present. Prudent. Welfare. Situation. Inappropriate. Offended.

So I took a deep breath and said, "Well. F. You are coming into our home. Our children live in the home. This is our arena, not yours or the ART's. And the team meeting was to discuss the children in question. My daughter was in her room. My son was deeply involved in drawing. There was no shouting or hostility. I've already conveyed my distaste that you do not respond to my phone calls and that it's pointless to call you. And I don't see how the issue was so emotionally charged that the children needed to be secured elsewhere or secluded from the discussion. Since the situation arose that day and had a direct effect on the events of the meeting, I think it was perfectly appropriate to discuss it then, as it happened. And frankly, since this is our home, and you are the service providers to my children, I find it offensive that you would choose to rebuff and correct me for discussing my concerns about my children directly with you." And knowing that predatory people feed on emotion, I said all of this very calmly and made certain to not show emotion but to certainly inflect certain words. I love throwing a controlling person's buzz-words back at them. It takes the power out of their words. Levels the playing field. Hey, look at me, I can use those words in a proper sentence too! This whole discussion, this whole power struggle was about ax versus ask. She knew it and so did I, but hey, some people nurture and protect their right to maintain their ignorance. And I am more than willing to have a verbal spar with her. I know the power of my vocabulary. And I know the weakness in hers. Funny thing about people. When someone knows they are right and cannot be defeated in their views, they can often be nasty, go on the attack, exact their pound of flesh. I've learned the hard way to preserve the facade of the relationship and when I know I am right, I can be so sweet I'm sticky. I prefer not to. I hate sticky people. But when I know I'm right, I can play nice all day long.

So instead of addressing any of my comments back to her, she chose another line of attack. She said she felt I'd been very rude. I'd been very aggressive and hostile. She was put on the defense and had felt personally attacked because she hadn't expected to be spoken to like that. Okay then! Another deep breath. I said, "I was neither rude, hostile or aggressive. I aired my concerns, illustrated my points, offered a solution and then waited for your response. I neither shouted nor so much as raised my voice. If you recall, my son felt at ease enough to interrupt us several times to comment on the picture he was drawing at the same table with us. I voiced my concerns yesterday in a tone of voice every bit as calm, level and polite as I'm speaking with you now. There was no hysteria, no aggression, no hostility. Again, I'm at a loss as to why you think it's inappropriate to discuss my concerns about my children at a meeting about my children. What other purpose are these meetings designed to serve if not about and for their welfare?" I was tempted to pull out the old Well I'm sorry you feel that way, which is neither an apology or a concession, but rather another slap in the face. But I refrained. That's her style. Not mine. She did say that in the future she would make certain that meeting times were not changed without consulting with me first.

And she started doing the closing salutation thing again, so I said I had an additional concern. And I aired it. I spoke nicely, but I said my piece. She'd been late, once again, to the meeting. She was well aware that Jack had therapies that my active participation was required for because I'd made her aware of that at the beginning of the meeting. Still she dragged what should have been 30 minutes, 45 at the most, into 90 minutes. And still she didn't leave. She did not need to sit there where Jack's therapies needed to take place and complete her paperwork. She seemed incredulous that I had expected to her to leave. She asked, "Well, did you want me to leave the home entirely? I was trying to get the programs put together for your children." And I said, "What I did expect was for you to wrap up and be finished when you said you would. Beth arrived at 3:15. She did Jack's entire OT without me. At 4:00 she asserted herself to get the ball rolling with you. At 4:15 you still weren't finished and I removed myself from your meeting. I certainly did feel that at the very least you could have relocated yourself to the front room or living room so that we could do Jack's feeding therapy at the table. You being late and running over your allotted time does not equate to Jack having to lose out on his scheduled therapies. I do not want this to happen again. It's not acceptable and it's not professional." I did not point out that the 30 minute meeting took a total of 2.5 hours. I wanted to, but I didn't. I guess I finally killed her with civility (I really was civil and calm) or she finally got tired of denying the facts. She sounded sincere in her apology for having run over her time and said that it wouldn't happen again. Maybe I finally just got it through to her that I wasn't going to be bullied and trifled with. I don't know what the magic trick was. So don't ax me.

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