new pics

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summer is coming to an end

this has been an enjoyable weekend of ME time, no schedules, no huge plans. some groceries, some laundry, a small project to help me get organized.The kids had a mellow weekend too, I almost feel like we are in cocoon mode right now, plotting against the school days that will come a week from this wed. Ciarra starts 5th grade, Jesse starts High School, and kristin goes to college. Time rushes by, and for this moment, I just want to hold onto all of us and the easy days and keep them close.
alas, life needs me to make some decisions and get ready. I created a bulletin board project for our entryway, something useful and semi decent to look at. Im no artist, to be sure, but I wanted something nicer than your average cork board.



basically, this is a corkboard covered with fabric, divided into sections for Jesse and Ciarra (Kristin keeps track on her own) and for the family in general. It makes it that much easier to remember school papers, sports schedules, Dr appointments, etc. I need to get a communication folder going, and update Ciarra's notebook with most recent IEP, etc. and i really need to clean out my office bins for this years homework and stuff.

C's teacher has been in touch, she seems wonderful. she asked me about adapting some stuff, and has some great ideas of her own. We will meet this week to go over anything we can think of to make this year easier. One of Ciarras best friends moved this summer, and she was sort of the buttress that brought C into the group at lunchtime, I wonder how that will go now that jenna is gone. she was a true gift to Ciarra socially, including her in everything. I worry.

Jim and I are doing well, he has been very loving and sweet the last few months, we made a commitment to one another to be a couple and not just parents. We actually had a date night the other night, a movie, it was nice.

what I would never change-and what I feared

how could I have ever feared a life with a child who would bring so much joy?

irreversibly prevented from being or becoming participating citizens

http://www.nypost.com/seven/07242009/postopinion/opedcolumnists/deadly_doctors_180941.htm?&page=1

this article talks about the elderly and disabled and health care, and quotes Dr. Ezekiel Emanuel, the brother of White House Chief of Staff Rahm Emanuel. He has two key positions: health-policy adviser at the Office of Management and Budget and a member of Federal Council on Comparative Effectiveness Research.

the article quotes him directly as follows:

Hastings Center Report, Nov.-Dec. '96

http://ncpa.org/pdfs/Where_Civic_Republicanism_and_Deliberative_Democracy_Meet.pdf



Ezekiel J. Emanuel

"This civic republican or deliberative democratic conception of the good provides both procedural and substantive insights for developing a just allocation of health care resources. Procedurally, it suggests the need for public forums to deliberate about which health services should be considered basic and should be socially guaranteed. Substantively, it suggests services that promote the continuation of the polity those that ensure healthy future generations, ensure development of practical reasoning skills, and ensure full and active participation by citi- zens in public deliberations-are to be socially guaranteed as basic. Conversely, services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed. An obvious example is not guaranteeing health services to patients with de-mentia."

The fundamental challenge to theories of distributive justice for health care is to develop a prin- cipled mechanism for defining what fragment of the vast universe of technically available, effective medi- cal care services is basic and will be guaranteed socially and what services are discretionary and will not be guaranteed socially. Such an approach accepts a two-tiered health system-some citizens will receive only basic services while others will receive both basic and some discretionary health services Within the discretionary tier, some citizens will re- ceive few discretionary services, other richer citizens will receive almost all available services, creating a multiple-tiered system

"The patient, or micro, level entails determining which individual patients will re- ceive specific medical services; that is, whether Mrs. White should receive this available liver for trans- plantation"


Obamacare scares the heck out of me, and it should ANY parent of a child with a disability, and especially those of us raising children with an extremely high rate of dementia as they age. This is not an email fwd, this is not someone elses words. This is me, fearing for our kids.

mini minister girl

2 Corinthians 12:9-10
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

Had 2 funerals this past weekend, my Uncle Russell's and my aunt Dot's. It was amazing to see cosuins and aunts I hadnt seen in many years. My aunt's son Michael is a big, strapping man now. I havent seen him since he was a teen. He had made a box to hold his moms ashes, and it was resting at the gravesite after the ceremony. He was standing there, lost in thought, just quietly saying goodbye I guess. Suddenly, Ciarra tugged her hand out of mine, and I turned to see her standing beside Michael. she looked up at him, very quietly said "are you sad?" and then put her teeny little hand in his huge one and started to pray. It was otherwordly.

She said a very few words, and I dont know exactly what she said because she whispered, but it was "Dear God and Jesus" something. Then she turned to this 6 foot plus many man and said as clear as a bell "I can give you a hug to make you feel better. Dont be sad, your Mom is with God and Jesus now." She hugged him very close, and then turned and left him there, he looked at me in sort of shcok, like "what the HECK?!" with a huge smile on his face and tears in his eyes. It was a very strange, powerful encounter.

What's most odd about it is that I wasnt shocked by it. She has done things like this a few times, she has this odd THING about her that just seems so self confidant and strong in cases of death. She is POWERFUL, like this little mini minister person. I am in awe of her ability to comfort people.

To me, it is a very overpowering feeling of kindness, love, goodness. I feel honored to have it near me, but it is so clearly NOT mine, not guided or taught by me, it just IS.

Matthew 11:25-30

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light

.

July is here

I heard on the news this morning that we have not had 2 days of sunshine back to back since APRIL 15th!!! At the end of June, they said we had had rain for 28 of 30 days. It is now July 8th, and we have had ONE day without rain since then. Sigh. Todays high is 54. No pool, no AC needed yet. Just blah. But...life goes on.

My Mom and stepdad are here from Florida for my Uncle Russell's funeral. We leave to drive up North for that tomorrow. It will be hard to say godbye to him, I loved him so much. My aunt Dot died 6 days after he did, we will bury them beside one another in the family plot. I will be seeing relatives I havent seen in 30 years. Kinda exciting, kinda scary.

Things that have happened in the last month.

-we went out to eat at weathervane and Vern tried to pay the bill. he and Jim chased one another around the restaurant (really) for 15 minutes. Jim won.
-Jesse seems to have a girl. she is gorgeous. I found myself having the "talk" with him as we drove him to her house last week. Yikes. He doesnt completely admit shes his girl, but she texts him constantly, shes been here and he at her house. I am old, but it hasnt been THAT long.
-Kristin has decided to go back to college. Financial Aid, anyone?
-Ciarra turned 11. we had her party at her summer camp. she had a great time, and so did we.
-Ciarra learned to kayak, and is pretty darn good at it.
-My darling Sarah got married, and I took her wedding pics. Beautiful bride, the apple of my eye too.
-Rob and Wendy and Hunter came for a visit! It was wonderful seeing them, but heartbreaking taking them to the airport afterwards. Home is here, in maine. I hope they can get home soon.
-Someone very special to us did something very unlike him last fall. He was defending his child, but he made a terrible decision. he went to prison recently. we miss him more every single day. He will not be out until 2012.
-We finally sold my Grandparents old house. The closing is tomorrow. yay. Finally done payingfor that thing!
=we went camping in the Rangeley mountains. I finished a long hike to a waterfall, but it was TOUGH.
-I am working on this extra weight of mine, God give me the strength to make the right choices.

My Kayak girl

Kristin, myself and a friend went to pick Ciarra up from camp today. When we arrived, the lifeguard, a very nice lady named Janet, told me she wishes she had had a video camera today. I said why, she told me that Ciarra had decided she was going to Kayak today...all be herself, out of the blue. And she did. Janet allowed Ciarra to hop back in one and show me her stuff. Wow! The kid LOVES kayaking, and shes pretty good at it too! Not sure I could make it go so well with only an hours practice! Once again, Ciarra surprises me.

Make photo slide shows at www.OneTrueMedia.com

The song used on this post is called The Climb by Miley Cyrus. When I hear it, it reminds me of this little girl of mine, and her constant attempts to break the mold and challenge herself. she is not a quitter, she is a go-getter and a powerhouse of a human being. The song is right, it just isnt about "getting there" it is all about the climb, the battle of wills that makes a human being who could easily give up and stop trying so hard to meet every challenge keep going, even when it is hard. When I think about Ciarra's life, I realize that in her shoes, I might want to take the easy way out, to let my disability be an excuse to just sit back and let the world come to me. Not this kid. she is constantly challenging herself, always striving a little harder, always ready to try anything at least once. It is hard to imagine a little tiny girl being my hero, but she is. she reminds me every single day that living the life God has given us to live is all that matters, that this is not a race, and that there are a million ways to prove who you are without ever opening your mouth to say a word. Its the climb, baby. :)

I can almost see it
That dream I'm dreaming
But there's a voice inside my head saying
"You'll never reach it"

Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking

But I gotta keep trying
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking

I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on

'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose

Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa

11

It seems impossible that today my little girl is eleven years old. We are more than halfway to adulthood, we are no longer trying to figure out where we are headed, we just keep putting one foot in front of the other and doing it. Eleven years have zoomed by, it seems like only yesterday I was hearing myself say "What are the chances this baby has Down syndrome?" only a blink of an eye since I challenged a doctor who seemed to be questioning why I hadn't "done something about this?" (meaning abort her) and wasn't it just 2 seconds ago that I was snapping the photo of her in the red coat on the steps of the preschool?

In my minds eye, I see a million memories, first steps on a dirt road at a DS conference; the first time I held her in my arms and heard Karen Gaffney speak, promising Ciarra she, too, would have that love and support; tiny pink headbands on a mop of dark hair; the tear duct that refused to open for so long, leaving one beautiful pirate-eyed baby girl squinting up at me; the first of many times medical professionals would look at me in wonder and ask "she sure is doing well, for having Down syndrome." The realization that it wasn't Ciarra they were surprised about, it was their own preconceptions. I remember the early friendships, some of whom remain strong to this day. Girl Parties, precious little ones dressed in their Sunday best to celebrate life with Ciarra. I remember revelling in the early words-"SHE CAN TALK!" Finding big brother snuggled up with her in her crib, one arm protectively across her shoulders. I remember her first drawings, the time she spelled Mom on a little sliver of paper I still have somewhere. I remember the sparkle in her eyes the first time she tied her shoes...at three. I remember days at the Cardiologists office, hearing the magic words "she is discharged". I remember tonsils and adenoids, and the struggle to wake up from anaesthesia.

I remember a hundred parents just ahead of me on the path, reassuring me about: atlanto axial instability (she didn't, but the testing was a nightmare); late teeth; first words; what leukemia looked like...was it possible? I remember her infancy and toddlerhood through a thousand photographs, documenting a life less ordinary, but so incredibly precious. I remember the terrible words of the terminating mothers, that "she is cute now, but you will regret it when she is older and the cute is gone." I remember finding out in detail what happened to over 90% of her prenatally diagnosed peers, and feeling completely ineffective and useless...except for the red coat picture...which seemed to be a living thing to so many people making the decision.

I remember the first day her tiny legs tried to climb the bus steps, and she turned and waved, my heart outside my body, little big girl off into the world. I couldn't protect her, shield her, anymore. I remember knowing she would be ok, when I saw her amongst her friends, smiling, one of the crowd. I remember tball, and basketball, when we tied a ribbon to the hoop to give her a visual reminder of which net was ours. I remember a million kindnesses, people who could have walked by that chose to stop and extend the hand of friendship instead, to celebrate every accomplishment with her. I remember the stands erupting when she got her first big hit in baseball. I remember the faces of her teammates, as they lined up outside the dugout to give her five, unscripted, as my video camera rolled while I tried not to cry from the beauty of it all.

I remember the struggle to make school work for her, the decisions, the battles, the victories. I remember walking into the lunchroom and thinking she might be sitting with the special needs kids at the table in the corner, then hearing laughter from a group of some of the most popular girls, who were laughing at something Ciarra said...not in a mean way, they were letting her tell a story, listening intently, reacting with love and support. I remember feeling like our lives are written in tiny sound bites of memories like these, and that building enough of them to fortify her for an uncertain future was important. I remember thinking that maybe it is time to stop worrying about the future so much, it seems obvious that today is the future we worried about, and she is doing fine.

I remember the phone call from my oldest, telling me that Ciarra "was a woman now" and being so grateful that she had been there, to make it cool, to not panic, to take it all in stride and help Ciarra see it as a good thing. I remember her dancing on the beach with her imaginary prince, twirling in the sunset, taking my breath away with her innocence.

I remember who I used to be, and how far I have come. I remember the days when "different" was anathema, when a child with disabilities scared me. I remember to be gentle with that me, because there are a thousand just like her all around us in the world who need gentle understanding and guidance as they learn about MY child.

Mostly, I remember to tuck every memory away, good and bad, somewhere in my mind. To look back when we look forward, to always remember that every single day will impact who she is and what becomes of her. I am not afraid anymore. DS is a part of who Ciarra is, but it has never defined her. She defines herself, and she will be who God intended her to be. Whoever that is is more than fine with me. Happy Birthday, big girl, I cant wait to see what the next 11 will bring.

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a VERY important SCOTUS decision-IDEA law

http://www.asmainegoes.com/content/scotus-public-must-pay-private-special-ed-0

After a private specialist diagnosed respondent with learning disabili-ties, his parents unilaterally removed him from petitioner publicschool district (School District), enrolled him in a private academy,and requested an administrative hearing on his eligibility for special-education services under the Individuals with Disabilities Education Act (IDEA), 20 U. S. C. §1400 et seq. The School District found re-spondent ineligible for such services and declined to offer him an in-dividualized education program (IEP). Concluding that the School District had failed to provide respondent a “free appropriate publiceducation” as required by IDEA, §1412(a)(1)(A), and that respon-dent’s private-school placement was appropriate, the hearing officerordered the School District to reimburse his parents for his private-school tuition. The District Court set aside the award, holding thatthe IDEA Amendments of 1997 (Amendments) categorically bar re-imbursement unless a child has “previously received special educa-tion or related services under the [school’s] authority.”§1412(a)(10)(C)(ii). Reversing, the Ninth Circuit concluded that theAmendments did not diminish the authority of courts to grant reim-bursement as “appropriate” relief pursuant to §1415(i)(2)(C)(iii). See School Comm. of Burlington v. Department of Ed. of Mass., 471 U. S. 359, 370.

Held: IDEA authorizes reimbursement for private special-education services when a public school fails to provide a FAPE and the private-school placement is appropriate, regardless of whether the child pre-viously received special-education services through the public school.Pp. 6–17.
(a) This Court held in Burlington and Florence County School Dist. Four v. Carter, 510 U. S. 7, that §1415(i)(2)(C)(iii) authorizes courts
2 FOREST GROVE SCHOOL DIST. v. T. A.
Syllabus
to reimburse parents for the cost of private-school tuition when a school district fails to provide a child a FAPE and the private-schoolplacement is appropriate. That Burlington and Carter involved the deficiency of a proposed IEP does not distinguish this case, nor does the fact that the children in Burlington and Carter had previously re-ceived special-education services; the Court’s decision in those cases depended on the Act’s language and purpose rather than the particu-lar facts involved. Thus, the reasoning of Burlington and Carter ap-plies unless the 1997 Amendments require a different result. Pp. 6–
8.
(b) The 1997 Amendments do not impose a categorical bar to reim-bursement. The Amendments made no change to the central purpose of IDEA or the text of §1415(i)(2)(C)(iii). Because Congress is pre-sumed to be aware of, and to adopt, a judicial interpretation of a statute when it reenacts that law without change, Lorillard v. Pons, 434 U. S. 575, 580, this Court will continue to read §1415(i)(2)(C)(iii)to authorize reimbursement absent a clear indication that Congressintended to repeal the provision or abrogate Burlington and Carter. The School District’s argument that §1412(a)(10)(C)(ii) limits reim-bursement to children who have previously received public special-education services is unpersuasive for several reasons: It is not sup-ported by IDEA’s text, as the 1997 Amendments do not expresslyprohibit reimbursement in this case and the School District offers noevidence that Congress intended to supersede Burlington and Carter; it is at odds with IDEA’s remedial purpose of “ensur[ing] that allchildren with disabilities have available to them a [FAPE] that em-phasizes special education . . . designed to meet their unique needs,” §1400(d)(1)(A); and it would produce a rule bordering on the irra-tional by providing a remedy when a school offers a child inadequatespecial-education services but leaving parents remediless when the school unreasonably denies access to such services altogether. Pp. 8–
15.
(c) The School District’s argument that any conditions on accepting IDEA funds must be stated unambiguously is clearly satisfied here, as States have been on notice at least since Burlington that IDEA au-thorizes courts to order reimbursement. The School District’s claims that respondent’s reading will impose a heavy financial burden on public schools and encourage parents to enroll their children in pri-vate school without first trying to cooperate with public-school au-thorities are also unpersuasive in light of the restrictions on reim-bursement awards identified in Burlington and the fact that parentsunilaterally change their child’s placement at their own financial risk. See, e.g., Carter, 510 U. S., at 15. Pp. 15–16.
523 F. 3d 1078, affirmed.