...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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Friday, July 23, 2010

SLP Evaluation, Finally!

Tuesday evening the phone rang at about 8:30. It was a woman I've decided to name "Miss Nervous," or MN for short, and she said she wanted to come to our home Friday to evaluate Willie for speech therapy services. I pretended I was not me and tried to take a message because Hell's Kitchen was on, and nothing short of one of the children hemorrhaging or loss of limb interrupts Hell's Kitchen! Yes we've been waiting for this call since April, but it's Hell's Kitchen for crying out loud! I thought there would be no harm in getting off the phone and settling in for some quality TV with The Beloved with Jack in our laps and calling MN back first thing in the morning. But my attempt at brevity didn't work.

MN wanted to ask questions. Lots of questions. Despite claiming ignorance and repeatedly saying "His mom will have to give you that information," over and over again, I still missed an entire segment between commercials. Dang it! She just didn't get it. She kept saying she really wanted to get some of this "vital information" before she saw William. And I'm only writing about all of this part because it didn't get any better from there! During that phone call, having repeatedly said the real me would probably want to call her back, I heard about her plans to be out of the office (where she was calling from) by about 10:15 and her hopes to drive through the dairy and get the gym by 11:00 when they lock the side doors, because she didn't want to park in front. Calling her back at ten would have been perfect. The 2-hour Hell's Kitchen would be over, we were planning the tape the 2-hour Deadliest Catch (Rest in peace, Phil Harris) and the episode of Rescue Me coming on at ten is always repeated at eleven so I could catch up on what ever I missed. No go! MN insisted that the fake me not interrupt the real me to call her back. Oy!

The next day, Wednesday, before noon, the real me called MN back. She'd given my alter ego her home phone, office phone and cell phone numbers for the real me to call at my convenience. A-hem. When I opened my cell phone to call her, there were three voice mails and six missed calls. All from her. Oh. Boy!

I left a message for her, assuring her that the time of Friday at noon that she and my alter ego had discussed was just fine, and if she had any question, please do call me back. She did call back, but despite plying my alter ego with a million questions, she had none for the real me. All that "vital information" was apparently no longer vital. I asked her three times if she had questions for me and she said, "No. Not really." We spent more time going over simple directions on how to get to our house than we did talking about William. In all honesty, I would have had a much easier time explaining to either of my Oldest Littles (You know, the ones with ASD???) how to get from there to here. Seriously. It was that time consuming!

So Friday morning I was up and at 'em to get the house straightened up and to vacuum and mop the floors. I timed Willie's bottles out and started him earlier than he would have liked to make sure that the SLP would be here for his feeding and I even squished up some avocado so she could see how well he was doing with that particular texture. MN called at about 10:30 to say that she had to go to a meeting close to our home, but she wasn't sure how to get here from the meeting. Eeeesh. Okay, I have to tell you firstly, we live in a town where the people who named things like streets were very short on imagination. If you are traveling East to West you will be traveling on a street numbered 10th, 20th, 30th, etc, all separated by exactly one mile. Secondly, streets between them are quite creatively named, 11th, 15th, 23rd, 33rd, etc, depending on which larger streets they fall between. You get it. If you are travelling North to South, you will be on a lettered street. As in the Alphabet. The English Alphabet. And thirdly, the streets all fall in order. Like the alphabet. Again spaced one mile apart, going North to South. You will not find Avenue G squished between Avenues R and S. It's simple. But explaining to MN was not going to be simple, despite the fact that now she was coming from the front end of the alphabet to pretty much the front end of the alphabet separated by 2 letters and 2.8 miles, not the next town over. It matters not that our streets are on the most basic and simplistic layout possible. It still took monumental effort on my part to not scream in pain and gnash my teeth while I explained once again how to get to our house.

And noon came and she didn't. At 12:20 I dialed her many numbers. At 12:40, she called me. She'd been held up an and IEP (in summer?) she was sorry, could she come now, and could she repeat these directions to me one more time? Holy smokes. What I'd told her before was simple, but based on what she repeated back to me, she would have sooner hit Alaska via Oregon and Canada before she'd wind up at our house. So again with the directions...turn left heading East on the same street you're already on. Go up .8 miles, to ##th E, there's a huge sign, and turn right. Go exactly 2 miles to E Avenue # with another huge sign, and turn right. Go 1/2 mile to ##th E and turn left. You're now in our neighborhood, the only housing tract in sight! Turn right at every first street you come to, #-4, G***wood, and #-3 and you are there. Right there. There are only three houses. We're in the middle one. Should this take her about, oh say, 20 minutes to get there? No. It should take about five minutes. And no, I won't go stand out in the yard in case she gets lost. (Really? Can nothing be simple? This is the person I am about to trust to properly assess my infant's needs? Can I get a What The Fudge?)

So she finally arrives. The first thing out of her mouth, seeing me feeding Will his bottle, was, "Oh. I thought you were going to wait to feed him while I was here." I said rather pleasantly, "Well, that was well over an hour ago." "Oh," she says, "I got lost getting here." Please just shoot me now! And the next thing she said was "Oh. Then this must be William." Not a question. A statement. She was dead serious. Like she was looking at a bug under glass. Um...yes? Or is Will one of the other babies we've got stashed in various places?

So let's get on with it. Yes, she was a bonafide SLP. No, she had not studied any particular program or theory. Yes, she had worked with many Down syndrome kids (I'm keeping score now!) and there wasn't any proven method that worked for everyone. (Duh!) She thought Will's birth weight of less than six pounds was "a good healthy weight" (Ch-ching!) and I said that he was actually small because he was almost a month early. To which she said, "Then he wasn't a good weight at all then." Are you confused? I certainly was. So, when she thought he was full term, less than six pounds was good, but finding out he was early, less than six pounds was now...bad? (Ch-ching!) She wanted to know what size clothing he was wearing. 3-6 months. Oh, so that's good. (Ch-ching! Ch-ching!) Really? For an 8 month old baby? Cue the Twilight Zone music, please.

While William ate she asked questions and I answered to the best of my ability with her convoluted history taking. All in all it was exhausting. We started with What does he eat? 8 ounces of Prosobee, every three hours. Formula or breast milk? Formula. Prosobee. My milk supply dried up after 4 months. You might try a lactation consultant. Really, after 4 months do you think I can regain lactation? (Ch-ching!) I explained extensively what I'd done for over a month to regain my supply, all to no avail. Well, there might be something a lactation specialist can tell you to help. (Ch-ching!) So that's formula? (Ch-ching!) Yes I say, thickened formula. Thickened with what? Simply Thick. What is that? (Ch-ching!) I show her the package. You don't use Thick It? No. We use Simply Thick. How did you arrive at how much to add? I followed the package instructions, one packet to each 4 ounces. Why each 4 ounces? It's on the package. (Ch-ching!) There ensued a ridiculous question and discussion about why I was using a fast flow nipple instead of a slow flow with the hole cut larger. I found it very frustrating and said finally, because it was a STUPID question, "It's only nectar thick, it isn't honey thick. Well, have you fed him honey? Good golly I could not believe what I was hearing. I said emphatically, "No. Babies under two years old do not have the bacterial flora in their digestive tracts to prevent them from getting botulism from the honey." Oh. From there we discussed why I started thickening his formula, his progressively worsening wet congested cough while eating, his aspiration pneumonia, the doctors repeated refusal to order a swallow study starting at 4 months, the other doctor we saw who refused a swallow study at 6 months, his hospitalization, etc. She said So that's why you're holding him in that position to eat? (Ch-ching!) So then I moved on to feeding positions, after feeding care, etc and I finished that line of thought about the difficulties Dr ES from her own agency was having getting the study ordered. At least six times I had to explain Will's weak neck muscles, poor core strength and poor head control to her (Ch-ching!) and she finally said I really don't understand why he has such poor head control. I said it quite often comes along with hypomyotonia or poor muscle strength with Down syndrome. "Really!" she said. (Ch-ching!) At one point I wanted to ask if she'd really had experience "with Down syndrome kids" but the better questions would have been, Do you have experience with babies? Do you know what they are? Have you actually ever, in fact, seen one? Touched one? Can you identify one? Here in this room?

She was pleasant enough, but all questions were prefaced with a disapproving facial expression and a tone of disbelief in each sentence. At one point she asked "Why didn't you ever request a swallow study from his doctor?" Just kill me now, please. Big sigh.

Will got to the point where he was contentedly full enough to stop drinking his bottle and still interested enough to start on the squished avocado. There ensued another loopy conversation about feeding equipment. "Do you have a high chair for him?" I said no, that he couldn't use one yet. Oh? Why not? I explained again about the head flop. The poor neck and core muscle strength. I showed her the Bumbo I'd modified and explained that he'd outgrown the straps and it was just easier to now hold him in my lap. She wanted me to show her how it was too small. No, you're just going to have to take my word for it. Will is going to get cranky if I delay his meal any longer.

I got Will all propped in my arms to start the avocado. As I gave him each spoonful I expected some feedback on the feeding technique. Nothing. So I filled the empty space with explaining that I was putting the spoon in sideways, not scraping the food off the spoon against his gums, pressing the spoon onto his tongue, etc. You know, the stuff I expected her to instruct me on. When she finally looked up from her notes it was to express nearly hysterical alarm. "There's a chunk! A chunk! On the spoon! You just put it in his mouth!" And she lept up to hover in our faces, apparently waiting for Will to choke and turn blue. Right on cue, Sweet William raspberried her with his mouthful of squished avocado! I knew this kid was smart! Despite the fact that Will had eaten nearly half the serving already, she went on a diatribe about how his avocado should be smooth with no chunks, not even tiny ones, and wouldn't I like to mash this a little more, maybe add some formula to it maybe, make it thinner perhaps? She wanted his food the consistency of pea soup. Really? Has she ever seen the particle size in pea soup? She singled out a tiny "chunk" the size of an asterisk and said that it could pose a life threatening circumstance for William. Like I said, shoot me now! Right now! I honestly had to restrain myself from telling her that I was getting the idea that I knew more than she did. Instead I explained that babies and children with Down syndrome quite often have Sensory Processing Disorders and that as long as Will wasn't displaying any aversion to having a little texture in his mouth, I wasn't going to encourage him to develop any. Then she needed me to explain SPD with texture aversion. Then she asked, "And how do you know about this, what is it? Sensory Processing Disorder?" So I pointed to The Girlie and The Middle Little, respectively saying "Sensory Avoider, Sensory Seeker." She wanted to know how those terms were arrived at. I said that they both have ASD, didn't pause to find out if she knew what that was, and moved right along with, "But we're not here to assess them. We're here to assess Will." Again, Oy!

Once Will finished his avocado, I let him finish his bottle. Now MN expressed concern that it took him 40 minutes to finish eating. I said that I'd interrupted him to answer the door for her, get her settled, and he'd eaten by spoon for awhile. Well have you ever tried feeding him his formula from a spoon? No, I said. What would be the point in that? And I waited for an answer, but there was none forthcoming. It would be labor intensive to feed his bottle food with a spoon. I just thought that you might have tried it. (Ch-ching!) It's just an alternative way.

So on to the next thing. She'd brought yogurt. Had I ever fed him yogurt? I said I was sure he's lactose intolerant, but I had given him pea sized tastes a few times. At the "pea sized" description, she wrinkled her nose and said "Oh," but didn't seem phased by the lactose intolerance. She pulled out two yogurts from home out of a bag. Strawberry and plain. She said she'd thought she had vanilla, but it was plain. I picked up one of the containers. It was warm. I said so. Oh, well I had that meeting. I said I didn't think he'd like plain, and babies aren't given strawberries before a year. Oh? Why not? It's a big allergen. We have peach in the fridge. Let's try that. And again with the near hysteria about the chunks!

A tablespoon of peach yogurt later, MN was concerned about how thin the yogurt was. Is your refrigerator working properly? Yes, actually, it is. And the mental reservation, what about the warm yogurt you wanted to feed him? But I said nothing. MN now had the spoon in her hand and was attempting to feed William. He wasn't having it. He wouldn't open his mouth. She kept bopping the spoon against his chin, I guess trying to coax him to open his mouth. He wasn't having it. After about fifteen tries he finally opened his mouth to laugh at her and she darted the spoon in and out so quickly that I'd thought she'd been bitten! Will thought this was a game! He spit out the yogurt and opened his mouth, and again with the darting spoon! Was she afraid she would touch him? Three more times with the spitting, the mouth opening, the darting spoon. I finally said he'd probably had enough and took the yogurt and spoon away.

There was more nonsensical stupidity, a lot more. These were sadly, just the highlights. Eventually she started her paperwork and then handed a copy to me. I asked what her recommendations were going to be. She asked what I wanted. I said that babies getting ST twice per week seemed to benefit the most. So, she wrote down her recommendation for twice weekly! Would she be our ST? Oh, no. No. Much head shaking I don't do that. More head shaking. No. I don't do the actual therapy. Well dang. That sure explained a lot!

And then she wanted directions back to her office. Oh. My. Gosh!

So there it is. Now we wait for the actual ST who will be providing each session to contact us. Heather from the Autism Response Team was here with The Olders for this entire exchange. No sooner had I seen MN to the door and turned around, she was frantically ringing the doorbell and trying the door! Heather called out, "It's her phone! She forgot her phone!" And Heather thrust it into my hands. I opened the door and gave the panic stricken woman her phone! "Oh thank God!" she exclaimed, seeing her phone! I got back to the kitchen where Heather was and we both burst into laughter. "What did she think? What? Had we all magically disappeared in those two seconds the door was closed and she'd never see her phone again?" I said I didn't know and that I hoped we'd never have to see her again! For the next hour and a half Heather and I recounted the strangeness of just about every thing the woman had said. It was really very, very odd.

2 comments:

Patti said...

I can't stop laughing at this post. I mean, I know it had to be frustrating, but it still sounded like one of those "I'll laugh about this later" moments:)

Tracy said...

Even though I toned my frustration down by a large margin, I still thought it was harsh...but I was there and lived to tell the tale! Heather is my witness. She's very kind and decent and she was even blown away by that woman's every action and word!