Monday, May 14, 2007

whew, back to school


Another bit of a rough weekend, especially Saturday when I took Lars to Davis' Farmland to have a sweet, wonderful toddler time romping with cute endangered farm animals & playing on cute playground equipment. Not. Screamed bloody murder. So lovely to receive those what-kind-of-a-terrible-parent-would-make-her-kid-scream-like-that-&-not-be-able-to-stop-it-? looks.

Seems he's upset with us for not taking him to school over the weekend. Sunday I spent a good half-hour saying in different ways, "one more night of sleep, then back to school," and all at once understanding seemed to come over him, he was able to stop complaining & enjoy the rest of the day. I could be projecting, but this is really what it seemed like happened.

We'll work on it, extemporizing on 'stay home days,' 'school days,' & 'x more nighttime sleeps until the next school' day themes. It'll probably click in around the end of July when we're facing five weeks of no school. Yelp.

Make no mistake that this is an amazing & fabulous problem to have & I'm completely intoxicated by its very existence.

Hoping Larsy got to go swimmin' today at school; last week he slept through it 'cause he'd had a terrible night, but last night was great, so fingers are crossed.

Sunday, May 13, 2007

standing today 1:00 Framingham green


From standing women dot org, a fantastic way to spend 5 minutes of Mother's Day. You can stand anywhere, joining women across the globe and back in history. Mother's Day is no hallmark holiday, it was originally started after the Civil War, as a protest to the carnage of that war, by women who had lost their sons. Here is the original Mother's Day Proclamation from Julia Ward Howe, 1870:
......................................

"Arise, then, women of this day! Arise all women who have hearts, whether our baptism be that of water or of fears!

"Say firmly: 'We will not have great questions decided by irrelevant agencies. Our husbands shall not come to us, reeking with carnage, for caresses and applause. Our sons shall not be taken from us to unlearn all that we have been able to teach them of charity, mercy and patience.

"We women of one country will be too tender of those of another country to allow our sons to be trained to injure theirs. From the bosom of the devastated earth a voice goes up with our own. It says "Disarm, Disarm! The sword of murder is not the balance of justice.'

"Blood does not wipe our dishonor nor violence indicate possession. As men have often forsaken the plow and the anvil at the summons of war, let women now leave all that may be left of home for a great and earnest day of counsel. Let them meet first, as women, to bewail and commemorate the dead.

"Let them then solemnly take counsel with each other as to the means whereby the great human family can live in peace, each bearing after their own time the sacred impress, not of Caesar, but of God.

"In the name of womanhood and of humanity, I earnestly ask that a general congress of women without limit of nationality may be appointed and held at some place deemed most convenient and at the earliest period consistent with its objects, to promote the alliance of the different nationalities, the amicable settlement of international questions, the great and general interests of peace."

Julia Ward Howe
Boston
1870
......................................

And more mothers' day history from our dear West Virginian friend, Carylbeth:

Did you know that the national recognition of Mother's Day happened due to the efforts of a WV woman?
Anna Jarvis held a ceremony in 1907 in Grafton, West Virginia, to honor her mother, who had died two years earlier. Jarvis' mother had tried to establish Mother's Friendship Days as a way of dealing with the aftermath of the Civil War. Anna Jarvis began a campaign to create a national holiday honoring mothers. She and her supporters wrote to ministers, businessmen and politicians, and they were successful in their efforts.

In 1910, West Virginia became the first state to recognize the new holiday, and the nation followed in 1914 when President Wilson declared the second Sunday in May to be Mother's Day. Jarvis used white carnations as a symbol for mothers, because carnations represented sweetness, purity and the endurance of mother love. (Today, white carnations represent a mother who has died, while red carnations represent a living mother.)

Unfortunately, Jarvis became bitter over the commercialization of the holiday. She filed a lawsuit to stop a 1923 Mother's Day event and was even arrested for disturbing the peace at a mother's convention where white carnations were being sold. Jarvis never married and never had children. She died in 1948.

Wednesday, May 09, 2007

catch up...







Howdy... I really wasn't feeling well & have been buried in work & just couldn't bring myself to stay awake to write the past week.

The long & short of it is we're thrilled pink & purple, up & down silly with Lars' placement, the amazing people he's working with, how incredibly happy & excited about school he is, the clarity with which he is telling us that this is exactly the right program for him...we just can't say enough good things. The progress & gains he made in just the first week, for heaven's sake. Stunning. He's so ready to be there & so ready to learn. Gush gush gush.

We're even thrilled with the transportation, which started this week: he's mostly sleeping all the way there & back, just as we had hoped he would, arriving rested & ready to rock n roll. And it's our neighbor transporting him.

Wednesday, May 02, 2007

fantastic first day

Lars had an unbelievably great first day of school yesterday!

Details and pictures to follow soon.

(Mama's been sick, or there would be many more details already...ah well.)

Sunday, April 29, 2007

this morning's snuggles



good weekend

Had ourselves a swell weekend, with all day Saturday spent at the Perkins Preschool conference, which was fun, and today we were at church where I heard the woman who is candidating for our senior minister position (thought she was wonderful) & Lars took an inaugural 40-minute swing ride on the new swing purchased just for him, & we had a little ribbon-cutting ceremony wherein our director of religious education read from a book called Welcoming Children With Special Needs: A Guidebook for Faith Communities & re-affirmed that he is fully welcome in our Unitarian Universalist congregation. A beautiful thing, indeed.



We're set to start preschool at Perkins on Tuesday. ! . Was in the preschool Saturday because that's where Lars' childcare for the conference was based & they have created his own unique tactile symbol (with yellow mylar); there's one in his class & one on his cubby down low where he can find it. I was teary just looking at it; town never did one thing to get ready for his arrival.

Four-hour genetics appointment last week. Yikes. They want to re-test Lars for D-2 Hydroxyglutaric aciduria because there are often false negatives, and because so many symptoms match...actually 12/13:

+(neonatal) seizures which are often hard to control (this is probably the most common symptom)
+hypotonia, especially in the first few weeks of life
+mild dysmorphic features (e.g. micrognatic, hypertelorism)
+dilated cardiomyopathy (dilatation of the left ventricle)
+gastro-intestinal problems; a lot of vomiting especially in the first three years
+slowly working stomach/bowels; constipation is common
+gastro-esophagal reflux
-cardiomegaly (sometimes) [don't have this one, at least not that we know]
+myelin of the brains not fully developed
+developmental delay
+irregular EEG (a.o. hypsarrythmia)
+cortical blindness
+abnormal MRI-findings (immature brains, pachygyria, micro- or macrocephaly)

Thursday, April 26, 2007

big preschool visit day

Incredibly wonderful. So exciting. Perfect.

He did amazingly well.

I'm too tired to write more, but it was as wonderful as I'd hoped, and even more so.
Lars thought so, too.

Tuesday, April 24, 2007

better mostly

Lars is mostly feeling much better. Tummy's still a little fragile & he's having (seemingly) random crying bouts this afternoon & evening, but fever seems to be gone (knock on cyberspace) & he was extraordinarily happy this morning.

His new teacher (gasp, grin) came to visit at home today. She's fabulous. They hit it off right away. She's almost as tall as Mama.

Genetics appointment tomorrow, Perkins social worker coming here tomorrow evening. We all go in to visit Thursday. So exciting...

Sunday, April 22, 2007

themes

Courtesy of zemerl dot com:

drinking
dancing
singing
shtetl life
suffering
parenting
food

That about covers it, vos?

sibling thoughts

I'm putting together the next phase of an appeal to our insurance company to cover the siblings-of-kids-with-special-needs support group for Joa @ Children's. We missed participating in the current group because they hadn't approved it yet; I'm trying to get it in place for the next 8-12 week group. Found some interesting sibling experiences that give a sense of what's at stake here:

"I had only been exposed to the 'this experience will make you a more compassionate person' school of thought and because of that believed that the more negative feelings I sometimes have were merely selfish and evil."

"Nobody gets off easy in this mess. If the 'normal' child becomes the preferred one, he/she feels a lot of guilt and anger. If the special needs sibling becomes the preferred one, well, the 'normal' sib feels guilt and anger...many 'normal' sibs choose not to have children."

"(Healthy children) grieve, they feel guilty, and they struggle to compensate by achieving for two."

"Fixing the unfixable, or saving the irredeemable, is a frequent occurrence in sibling dreams... Dreams in which a sibling no longer has the disability give a brief respite that is both painful and pleasing to recollect."

"(The 'normal' one's) everyday trials and tribulations pale beside the catastrophe of their sibilings' predicaments, so it seems natural that they should never come first... As a result, many healthy siblings grow up with a hunger for attention that it never satisfied and that seems wrong to feel. Their needs, so consistently ignored, become invisible to themselves."

"The fallout from being invisible is to become self-effacing; perverse preeminence breeds perfectionism, morbid self-criticism, and fear of failure... Excelling is not an ideal; it is an emotional life preserver."

"... a nameless anxiety haunts them and makes everything they have seem tenuous or undeserved... compulsive self-sacrifice driven by the belief that you do not deserve your advantages... At significant moments it is excruciating to know how much better off you are and always will be."

"As difficult as it was to read this book and grapple with all that I had so conveniently ignored for so long, recognizing the common traits of 'normal' siblings is key to becoming whole. Safer outlines those traits to be:
- Premature maturity ("... expected to shoulder ... responsibility ... w/o complaint.")
- Survivor guilt ("Every achievement is tainted...")
- Compulsion to achieve ("... must succeed for two...")
- Fear of contagion ("... secret conviction that normality is tenuous or a sham.") "

"For a long time, my other siblings and I resented "what he had done to the family" but the fact is, he can't help it. And we have come to terms with his disorder, and even found him to be enjoyable if you are patient enough to sift through the layers of fear and anger. Frankly we have banded together as siblings over his illness, but it took time, and most of it was due to our parents, who balanced his needs against our perfectly understandable resentment, anger, and misunderstanding. They never rebuked us for how we felt, only explained to us the truth of my brother's problems, and were always available to talk to us when we needed to vent. My brother HAS a problem, he's not a problem. So I think if families were aware of what the normal one was thinking, they could help their normal children more, and help them to work through their resentment and guilt."