LOVE My Live

Dear Family, Mostly Aunt Banana & Grandma & Grandpa! :)



Your thoughtfulness and generosity know no limits. I regret that in our holiday haste, we have lost track mostly of who gave what, but I do know a certain favorite few. Ok, so Daddy scored each of their favorites - Phoebe's DSIXL, and Christopher's Angry Birds board game and t-shirts, those are far and away their favorites. They both love Christopher's Bilibo chair. Phoebe absolutely adores her Spectra doll from NB, as well as the Liv Doll hairstyle head thing from Janet & Brooke. Christopher's second favorite is the train table - thank you NB! He enjoyed it as a table for a simple oval track for a few days, but I did get the city center installed by Thursday, and he does love it.

The "packages" they offer for school portraits are absurdly expensive, and they want us to order them in advance, which we are reluctant to do - what if the kids don't cooperate and the photos come out hinky? So we sent them both to school on picture day with no pre-paid package order, knowing we'd be able to buy them online after-the-fact.



Christopher's photo came out adorable!

Christopher has taken a turn for the talkative! and artsy! We're past parroting and echoing now, he's using real phrases, expressing his own thoughts, trying to have real conversation - it's so wonderful!! :) And at the same time he's developed this new-found interest - and skill - at drawing! Where before he couldn't (or wouldn't) make straight lines or attempt circles, he's now drawing people, with faces and eyes and "toes" (that look like really really long legs) and ears and hair, and trees, apple trees specifically. It's like the flood gates are open! And of course we're SO loving it! Oh, I wonder what's next!?

Phoebe had been discouraged because Christopher didn't return her silly/gruff "I Love You" as readily as he had returned mine, but I told her that it took me three days (a slight exaggeration), and that seemed to bolster her determination. Finally last night Christopher did tell Phoebe "I Yuv U 2" and it put a big smile on her face. I long for genuine Phoebe/Christopher sibling interaction almost as much as I longed to hear Christopher's sweet little voice, it warms my heart to see the early signs of that developing relationship. :)

Well, actually, it was "I Yuv U!" :) I noticed recently that I get his attention quickly and easily when I use my super-silly scrunched-faced gruff voice, and that it encourages him to repeat what I've said, so on Friday I started with that silly/snuggly/gruff talk, and in short order he replied back w/his equally-silly scrunched-faced gruff "I Yuv U!" I am one happy Momma!

I've signed up for my first Autism-related activity, a 5k run/walk on Sat 10/22. I'd be honored if people walked with me. I'd be happy if people donated in support of my efforts.

Christopher is adding new words to his vocabulary so fast I can barely keep up! :) Many of his words are difficult to understand, but some of them are clear as day despite his mispronunciations. His most adorable recent addition is "Oops!" which he started after very deliberate "accidental" falls - he'll run run run, then sit down quickly and say Oops! Or he'll walk up to you with a big grin, turn around and back into you and say Oops. Or very deliberately knock something over and say Oops. He leaves out the 'p' tho, so he's saying Ooo's, which sounds like Ooots. He's the cutest thing ever. ♥

We also had a neurological evaluation this morning at CNMC. Their assessment, basically, is that his hand thing is most likely not neurological, but more likely typical autistic self-stimulation. If he were entering some altered state of consciousness during the tremor, or if it was exclusively one side, or if it was whole-body, then perhaps they would be more inclined to suspect seizure activity. But because it's so focused, and because his schedule has changed a lot lately with the new school year, they are inclined to think it is just self-soothing. The tremors also seem to be subsiding as suddenly as they onset, which also contributes to the theory that it's not neurological. They started Saturday, maxed Wednesday, and we haven't seen any yet today. We will continue to watch him closely ourselves, and are scheduled for a two-month neuro follow-up, at which time we might schedule an EEG if he continues to have any worrisome symptoms. Phew.

We saw nutritional biochemist Dr. Laura Power yesterday. She was amazing. I was impressed with both her knowledge of and passion for the science of nutritional biochemistry. It was mostly an observational evaluation, because Christopher has never had any blood work done which she could review. She did order extensive blood work, a complex urinalysis, and a mineral hair analysis - all of which will take a few weeks after we have his blood drawn and collect the urine and hair samples and send those all off to the labs. She seemed confidently optimistic that we would see improvements in Christopher once we identified any deficiencies and started a supplement program.

Here is a short video in which Christopher's hand is just spasming away.

I noticed Saturday that Christopher's hand was flinching. His right hand was open, but fingers curled, it was kind of an open-fisted spasm. I noticed it several times Saturday and Sunday. When I mentioned it to JR Sunday he said that he had seen it, but thought it was a sign of frustration, we didn't speak specifically about when we had each first observed it. I did email his Pediatric Developmental Specialist, Dr. Pratt, to report the onset of a new symptom and to request a neurological evaluation. When I got home yesterday I observed that it was already obviously more often and more intense - a triple-flinch vice a single-flinch - and I saw it in both hands. I spoke with JR to get clarification on how long ago he had noticed it, and he too had only seen it this past weekend, and we are both alarmed with its apparent quick onset. I emailed Dr. Pratt again this morning to relay my sense of urgency, and she said to tell the neurology department that she said it was an urgent matter so that we could be seen sooner than later. Well the neurology department said their first availability wasn't until Dec 21st! So I am waiting now to hear back from Dr. Pratt to see if she can't get us in sooner than that - more like immediately. If she can't, we will seek a neuro consult elsewhere.



I often speak to Christopher as if he perfectly well understands me. He might. Probably not, but maybe. I told him yesterday that we can deal with whatever he decides to throw our way, but he's not allowed to get worse -  only better. Hopefully he's onboard with that plan.

Christopher recently started adding something that sounds like "Wull Dun" to the end of many of his many ABCs or 123s, I was delighted to learn from JR that he is telling himself "Well Done!" :) It's the cutest darn thing. And lately he's added "Good Job" so it's "Wull Dun Good Job!"

I napped with Christopher both Friday and Saturday - a rare and delightful luxury. When we woke up Friday afternoon, he said "two" which I figured meant we were going to count to ten for the forty-millionth time. With Christopher, in order to proceed from one letter to the next, or from one number to the next, it requires we repeat everything he says. So I said my "two" and was expecting three, but to my utter delight and astonishment, he instead counted by two's all the way to 26! without hesitation! He rattled it off as if he'd been doing it for weeks. I wonder how much else is in there, all ready, just waiting to come out.



And then, even better, in my excitement about that, I asked for a kiss, which has previously always meant he presents his little cheek for ME to kiss, and instead he gave me an actual kiss on the lips! I was so delighted! ♥

Christopher has been talking up a storm this past week! He's getting better at some of his more difficult alphabet characters, namely W, and he seems to be showing off his knowledge of all the words he knows associated with each letter. We used to step through the alphabet with a standard set of words: A, Apple, B, Ball, C, Cat, D, Dog, etc., he's now prone to using other words where he knows them, E might be Egg or Elephant, K might be Key or Kangaroo, J might be Juice or Jacket - he's definitely making language progress. :)

JR says he knew it in his heart anyway, and obviously we were well aware of his developmental delay and that he needs special support, but I wasn't prepared for my own emotional reaction to the diagnosis. :( My little guy needs SUPER-parents, and we're just regular, figuring it out as we go, struggling ourselves parents - and I'm worried that might not be enough for him. I know that our love for Christopher will drive us to do the very best we can, but we're the first to admit that we are already struggling with the basics, where do we find the strength to do even better? And can we do more/better for Christopher without affecting our ability to also do our very best for Phoebe? I know what happens at work when my plate gets too full - things start falling off the edges - and that's just not an option when the plate is full of my children's well-being.

Yay! I finally got an appointment for Christopher with a Pediatric Developmental Specialist! Dr. Jacquelyn Lucile Calbert. We were (are still) waitlisted with both Doctors Panitz & Pearl, but I was still looking for someone who could see him sooner. Dianne suggested one of the pediatricians at AJ's pediatrician's office, Dr. Farber, but when I called to schedule with him they clarified that he wasn't a developmental specialist, although he does take interest in developmental pediatrics, but they did refer me to three specialists - one of whom had an immediate availability. Phew. Dr. Calbert, like Dr. Pearl, is affiliated with the highly-regarded Children's National, so I'm good w/that.

I so enjoy receiving little crafty preschool gifts that I had no hand in researching, setting up, executing, or cleaning up after! :)

JR & I (& Christopher) are meeting with an FCPS Special Education Preschool teacher at 1015am Friday morning to initiate the development of Christopher's Individual Educational Program (IEP). Ms. Giatra Gorham teaches at very nearby Terra Centre, presumably an FCPS special education preschool. Christopher's IEP is due by 3/03 (which is a Saturday, so will be done before then). I still have no good indication whether he will receive in-home services or class-based services.

The meeting Thursday was a simple discussion about whether or not the team agrees that Christopher would benefit from specialized individualized instruction. We/They all agreed he would. He's eligible for Fairfax County Services. We will meet next week with the curriculum planners, they have thirty days to develop a formal IEP, but they said services could start after the first meeting. I had thought it would be just preschool, but the more I look into it, it could include other more intensive therapies, maybe in-home if it would be more beneficial. We'll see.