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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Saturday, February 28, 2009

The Da Vinci Players- Once Upon a Mattress-held over one more week!

Our youngest son Brian works for The Da Vinci Players, and we have enjoyed several productions given by these very talented local actors. Brian is not acting in this, he did the choreography for it. Due to our illnesses we have not been able to see this, but it is getting good reviews. We hope we can go next weekend. A review by Tucson Weekly below:

Royal Production

The Da Vinci Players do well with the funny, timeless 'Once Upon a Mattress'
By JAMES REEL

Nick Gallardo, Kristina Sloan and Dennis Gallardo in "Once Upon a Mattress."

Once Upon a Mattress is remarkable--a second-string musical that somehow holds up much, much better than some other 50-year-old shows. This fractured fairy-tale version of The Princess and the Pea is witty, a little cynical and not the least bit dated. It's getting an enjoyable production on Tucson's far eastside by the Da Vinci Players.

Once Upon a Mattress is best known as a TV musical, thanks to two productions starring Carol Burnett as the princess who must prove herself worthy of marrying a demanding queen's son by being so royally sensitive that she can detect a pea slipped under a pile of 20 mattresses. (There's even a third Burnett production, in which she plays not the princess, but the queen.) But the show started out in a small theater in 1959, so the Da Vinci Players' tight space at Studio Connections has historical precedent. The local version brims with good cheer, solid characterizations and fine vocalizations in the most important roles, of which there are surprisingly many.

Our heroine, Princess Winnifred, doesn't show up until halfway through the first act. This allows time to introduce several other figures in the story. (The book is by Jay Thompson, Dean Fuller and Marshall Barer, with Barer also providing the funny lyrics.) The queen, bearing the perfect name Aggravain, is so possessive of her son, Prince Dauntless, that she sabotages any prospective matches for him by subjecting prospective brides to tests they can't possibly pass. This is a matter of great concern to the members of the royal court, for none of them can wed before the prince.

And that's a big problem for the fetching Lady Larkin, who has been impregnated by a hunky knight, Sir Harry. It's in their best interest to get Dauntless married off so they themselves can tie the knot before Larkin is disgraced, and Harry's political future is compromised.

One of the most interesting things about Once Upon a Mattress is that it's sometimes hard to figure out whose story this really is. Traditionally, Larkin and Harry would be the bright young secondary couple brought in as subsidiary counterpoint to Winnifred and Dauntless. But it's often Larkin and Harry who seem most worthy of our interest, while Winnifred and Dauntless work more like comic relief (particularly since Dauntless' role is so underwritten). Yet Winnifred is a larger-than-life character who dominates her every scene, and Larkin and Harry's happiness does hinge on Winnifred's sensitivity to that pea. Instead of getting one romantic couple and one comic couple, we get a fine melange that keeps the audience interested, no matter who's on stage.

And who is on stage in the current production? The role of Winnifred alternates between Samantha Cormier and Maria Alburtus; it was Alburtus holding forth the night I attended, and she's a hoot--reliably daffy, with a voice as strong as her comedic instincts. Opposite her, remarkably, Brian Hale manages not to come off as milquetoast as Dauntless; he's charming and boyish, but not childish, and not the dud that this character can make of actors.

Then we have Kristina Sloan and Thomas Wilson as Lady Larkin and Sir Harry. They make a cute couple, but more than that, Sloan in particular has the personality, acting chops and vocal ability to make us believe that this is really Larkin's story. Lissa Staples perfectly hits the mark as Queen Aggravain; all at the same time, she's a haughty, melodramatic chatterbox. Todd Luethjohann brings plenty of energy to the mute role of her husband, King Sextimus.

Director Robert Encila and choreographer Brian Levario do a good job of maneuvering the fairly substantial cast and chorus around the small stage, and if not everybody standing in the back is as adept as the leads, well, that's why people start out in the back.

Why isn't Once Upon a Mattress more popular? Probably, it's the score by Mary Rodgers, daughter of Richard. It's perfectly agreeable, but not up to her father's lyric and harmonic best. She herself has said that she had a "pleasant talent but not an incredible talent," and that's evident here. Her songs work very well in context, and they're all enjoyable, but you probably won't be humming her tunes on the way home.

Still, it's fun while it lasts, and the Da Vinci Players do it justice.

Once Upon a Mattress presented by the Da Vinci Players

7:30 p.m., Friday and Saturday, Feb. 27 and 28; 2 p.m., Sunday, March 1
Studio Connections
9071 E. Old Spanish Trail

$22 adults; $17 students, seniors and military

731-1559

brownpapertickets.com

Finally a twinkle and a smile

Meghan is finally feeling well enough to joke and laugh with us again. Poor Meghan has been sick two weeks, so she has had a rough time of it. All together she has lost 8 pounds, she looks gaunt, especially her face. I can see her ribs too. Stomach flu followed bu another flu and just being miserable, and then strep throat on the heels of that. Poor baby. I can't tell you how relieved I am to see her smile again.

Meghan loves daddies Zune, and I would bet she would cherish one of her very own too, we would have to save up for that, but maybe it would be worth it, maybe for her birthday? She is listening to and singing along with "I'm a Barbie Girl". Too funny, but she loves Barbie dollies now, so it makes sense, right.

Kara and Amanda HAD to get in the tub, especially Kara, who gets Rastafarian hair if we do not wash it often. While she was really ill, she slept a lot, and we do not do baths with respiratory illnesses, so she was grungy. What sent her into the tub yesterday was the applesauce in her hair, she decided it was hair gel. LOL She also kept getting in the tub, telling us it was time, she felt well enough for her bath!
She decided to help Amanda get her hair washed, she pretended to get shampoo and wash Amanda's hair, and we thought it was so adorable, but soon after the pictures were taken, she grabbed Amanda and shoved her under the water, Amanda was so shocked she just lay there under the water, her mouth frozen in an O. Of course we scooped her up, but she was scared and neither of us could figure out why Kara did it. It happened so quickly we were shocked. It also illustrates why parents need to be there constantly while their kids bathe.

Gotta love that dirty little face, isn't she adorable? Amanda has a runny nose, but no fever and no signs she will get this flu. I really do believe it is because she never brings her hands to her mouth even more rarely to her nose or eyes, it is a little odd that she does not mouth things. Kara can't seem to keep things out of hers, and Meghan chews on her thumbs, no guessing why they both got sick. I was sitting here trying to beat a level in Bejeweled 3 (blasted game is giving me fits, and yes, I play video games) and I heard Amanda giggling behind me. Our kitten Skunky was purring and rubbing herself all over Amanda, and Amanda loved it. She and Skunky seem to adore one another, it makes me so happy to see Amanda attach to the cat and vice-versa.

I got a call from the SC yesterday, she was letting me know that due to the budget cuts it is likely Amanda and Meghan will also lose their in home therapy and once again made the beat the dead horse statement that; "The schools should be covering all of their therapies, not US". Needless to say, I am sick to death of hearing this statement, if the insurance pays for the therapy, then it is not for her to say whether the schools should, I have nothing against the therapists at the school, but they do not have the time to really work with the students in a school setting, so I do not feel it is as beneficial. There will be a time when Kara and Amanda will not need all the extra therapies, but right now I am fighting for all they can get to help them catch up. When we adopted Kara and Amanda we promised their countries we would take care of them, would get them the help they needed, we will keep that promise to them for both girls. (For Meghan too)

The SC said Meghan will lose her swim lessons in May, when her FSP renews. What was relayed to me was "These therapies are consultative, and they are designed to teach the parents the skills necessary to continue the instruction in the areas where the child is lacking" (Hmm, so those years in college the therapists spend were all for naught?) Yes, so what if you cannot swim, how will you help your child become a good swimmer? There are so many things I can say about that statement, but bottom line is, half the time I hear that a parent is not educated enough to address their child's special needs, hence the therapy the children receive, now they are saying that we will be taught to do it ourselves, and do not need the professionals to help us? Anyone else notice the hypocrisy with this line of reasoning?
I am weary of all of this, but will do what I can for my family.

Thursday, February 26, 2009

Oh goodness, how much more can a mom take?

I seem to be the only person who is not feeling horrible here. Yes, I am sick, but staying ahead of the worse of it, being sleep deprived makes everything more difficult for me, but at least I had a nice nap today. Tom and Julia are home for rodeo vacation. The rodeo is a big deal in Tucson, and the school districts give up other holidays in order to allow these days off for the their staff and the kids in town.

So giving medicine has been fun here, Kara will sometimes take it, others it runs down her face. Kara will take it most of the time. Meghan got chewable antibiotics, but she refused to take them, I suppose they do taste pretty bad, so we gave her Kara's liquid since they are the same thing, and now need to get a new script for liqiud for her.

Julia got another anitbiotic for her sinus infection, she was feeling pretty sick today. We both got a fright tonight; Julia came with me to the store and fainted while we were shopping. She said she was tired and needed to get back to the van, and then mentioned her eyes bothering her, then suddenly fell onto my shoulder and slid to the floor as I held her arms so she would not fall. I had thought she was joking with me at first, but she was out for a few seconds (centuries), and then opened her eyes and asked why she was on the floor. I pushed the basket aside and helped her up then supported her weight while we walked back to the van. I ran back in and purchased our items and we came home. She was pale and weak, but was not having pain, difficulty breathing or any indication she was in distress. She had not eaten all day, and I think that was one of the reasons. After she drank an antioxidant drink, she went to bed. I called the pharmacy after reading the side effects of Keflex myself and not seeing fainting as one of them. They mentioned dizziness, but fainting, no. The pharmacist said he could not see anything to indicate the medication caused the episode. Nevertheless, we are calling the doctor tomorrow to have the script changed. We will be checking on Julia a lot tonight.

Tom said he nearly fainted in school on Monday, he said he had to grasp the handrails and literally pull himself up the stairs, so I guess we could say that Julia is a few days behind Tom in this virus? He is feeling badly again, swollen glands in his neck, joints hurting. Probably has strep too, we love to share everything here, except with Amanda, thank goodness she is still doing OK.

Kara felt better tonight, was able to eat all of her dinner, Meghan is drinking, but not eating. Both have lost weight since their last doctor appointment, Kara lost 3 pounds, and Meghan lost 8! Thank goodness both girls were on the chubby side, the weight loss is barely noticeable in either one.

I have been taking mega supplements to stay well, fish oil, Vita C, calcium D glucarate, indolplex, isocort, cranberry concentrate for a bladder infection (yes, when it rains it pours) milk thistle, Vita D, and alpha lipoic acid. I take most of these daily anyway, I am just taking a few more. I think the isocort is preventing the terrible fatigue the rest of the family is feeling, and even though they see it is helping me, they do not want to take it. Time for bed, please pray with us that we will all recover soon.

Diagnosis: strep throat

Meghan and Kara kept crying if they coughed or swallowed, so we took them to the pediatricians office and sure enough, they have strep throat. Kara also has a viral rash and a cold sore on her tongue. Doesn't that sound awful? She has bloody mucous coming from her mouth (TMI), her sinuses drain into her mouth instead of to the back of her throat. The CNP said Kara likely had the blood from her tonsils. (No, none of them have had tonsillectomies).

Meghan is miserable; whining, moaning and grumpy, Kara is about the same with less whining. Julia has a sinus infection. Amanda still symptom free, but we got her a script for amoxicillin too, in case she does get it. Tom and I are still fighting the crud, neither of us feels great, especially with lack of sleep added to our list.

Wednesday, February 25, 2009

Girls are still sick

I did update Kara's blog too, sometimes having more than one, you can forget about the others...Meghan had a better day, but a rough night before bed. Kara needed some medicine for her nose before she could sleep. I can't figure out what in the world the girls have, vomiting and a cold? Two different flu's? If they are not markedly better tomorrow morning, we are taking them in, I may do it for a throat culture. They both are having trouble swallowing tonight, I know I will have another 3 hours of sleep tonight.

Please pray for the girls.

Tom and I are feeling a little better.

Tuesday, February 24, 2009

Meghan feeling a little better, Kara feeling worse

Kara woke up crying this morning, now Kara whines occasionally, but she rarely cries. She has a bellyache too, Meghan is still pale and lethargic, but she is no longer moaning in pain and misery. Amanda is chipper and so far at least. Her runny nose and her appetite are still present, Tom and I are still feeling ill and very sleep deprived, it is hard to care for others when you are not 100%, isn't it? If I did not have a constant headache, I would feel so much better. Julia did complain of an upset stomach as well, she and I tend to fare better with diverticulitis than the rest of the family. Kara and Meghan both have GERD, so I wonder if that is why they are having a harder time of it.

Therefore, it appears that the flu is alive and well in our home. I would appreciate prayers for the girls, Meghan looks so bad, poor little girl, and Kara is miserable, she is whining right now with a bucket in front of her, she does not want me to touch her, neither did Meghan when she was really bad. I am keeping away as asked, but it is so hard to sit and watch them when they are feeling so poorly.

Monday, February 23, 2009

Nearly 2 AM and no sleep

Well, Meghan has the stomach flu again, though we are wondering if it is the food we bought yesterday. We got Chipotle, and if I remember correctly, she got sick last time we ate it, so something in that food is making Meghan sick. She has been vomiting off and on for 3 hours, every time I drift off, i hear her starting again,

She is snoring away right now, so I will try to get some sleep. Kara and Amanda still have runny noses and neither is very peppy. Tom and I have been sick all weekend.

It is time for all of us to feel better, don't you think?

Saturday, February 21, 2009

DEPARTMENT OF ECONOMIC SECURITY FISCAL YEAR 2009 BUDGET REDUCTIONS SUMMARY OF MAJOR STAFF AND CLIENT IMPACTS

Remember, please write and call your state legislators about this. The link to state offices are below. For Tucson families, contact US Senators Jon Kyl and John Mc Cain, and Congresswomen Gabrielle Giffords offices as well.

Senator Mc Cain via email: http://mccain.senate.gov/public/index.cfm?FuseAction=Contact.ContactForm

Write or call: http://mccain.senate.gov/public/index.cfm?FuseAction=Contact.OfficeLocations

Senator Kyl
http://congress.org/congressorg/bio/id/203

Congresswoman Giffords:
http://www.visi.com/juan/congress/cgi-bin/newmemberbio.cgi?lang=&member=AZ08&site=ctc

DEPARTMENT OF ECONOMIC SECURITY FISCAL YEAR 2009 BUDGET REDUCTIONS SUMMARY OF MAJOR STAFF AND CLIENT IMPACTS

List as of February 17, 2009

Department-Wide All monetary amounts represent reductions in funding.

Est. General Fund Reduction
Staff reductions; furloughs; other operating reductions
$31,703,600

Eliminate upgrade of eligibility and case management systems for the family assistance, Jobs, and child care programs
$6,112,400

Eliminate disaster recovery contract, document management, and other information technology software maintenance agreements and equipment
$820,700

Aging and Adult Services

May not investigate 100 percent of Adult Protective Services reports

Reduce Area Agencies on Aging contracts, eliminating independent living supports for 450 older Arizonans
$2,061,000

Eliminate lifespan respite care funding, eliminates services for 130 caregivers
$350,000

Eliminate $75 monthly grandparent kinship care stipend for 100 grandparents
$52,300

Benefits and Medical Eligibility (Supplemental Nutrition Assistance and Cash Assistance)

Reduce cash assistance grant for the 38,500 cases (including child-only) in the program by 20 percent, from an average of $263 per month to $210
$7,386,900

Reduce by seven percent pass-through funds for Tribes that operate their own TANF programs (Navajo, San Carlos Apache, White Mountain Apache, Pascua Yaqui, Hopi)
$342,200

Eliminate General Assistance, final benefit paid in February to 1,500 disabled adults
$316,800


Child Support Enforcement

Reduce by 10 percent federal incentive payment sharing with counties operating their own child support program (Gila, La Paz , Navajo, and Pinal Counties )
$45,000

Children, Youth and Families (Child Protective Services and other Child Welfare Services)

Do not investigate 100 percent of potential risk reports made to the Child Protective Services Hotline (potential risk is the lowest risk report)

Reduce foster care maintenance payment by 20 percent, from an average of $910 to $728 per month, and eliminate other allowances for 4,500 children in family foster homes
$3,208,300

Reduce independent living stipends paid to 400 children aging out of the foster care system by 10 percent, from $795 to $715
$127,200

Reduce or eliminate in-home services for 4,000 children and reduce or eliminate support services and allowances for children in out-of-home care
$15,918,700

Reduce substance abuse services contracts, eliminating services for 1,400 individuals
$762,500

Reduce Healthy Families contracts, eliminating prevention services for 3,500 families
$10,750,000

Community Services

Reduce contracts for emergency shelter for victims of domestic violence
TBD

Reduce homeless shelter contracts, decreasing capacity by 1,100 individuals
$282,300

Reduce community action program contracts, eliminating short term crisis services for 1,000 families
$636,500

Reduce contracts with food banks
$167,600

Developmental Disabilities

Suspend non-residential state-only services for more than 4,000 children and adults
$6,231,600

Eliminate services for 850 infants and toddlers with or at risk of a developmental delay
$1,608,800

Reduce provider rates by 10 percent
$10,576,400

Employment and Rehabilitation Services (includes Child Care)

Reduce Jobs vendors’ contracts by approximately eight percent
$2,000,000

Impose a waiting list for vocational rehabilitation services for 2,100 disabled individuals
$1,246,600

Impose a waiting list for independent living rehabilitation services for 400 individuals
$41,000

Impose a waiting list for new low-income working families and suspend assistance for families with income between 110 and 165 of the poverty level, affecting 20,000 children
$20,000,000

Increase child care co-payments
$1,300,000

Reduce child care provider rates by five percent for 6,500 providers
$3,000,000

Reduce funding for child care quality contracts
$1,000,000

This list does not include all actions needed to meet the reductions included in SB 1001 and eliminate internal shortfalls

Read the PDF for more detailed information:
https://egov.azdes.gov/cmsinternet/uploadedFileOffice_of_Communications/FISCAL_YEAR_2009_BUDGET_REDUCTIONSl.pdf

Friday, February 20, 2009

Attended the rally today

Warning, this is going to be a vent. I am unsettled tonight, heart sore and saddened by what I have read and heard today. If you do not want to read this vent, please exit out of the blog, but I am truly interested on what you think about all of this. I feel very sad that no one has thought to leave a comment about what is happening in AZ, to me it means that folks simply do not care what is happening, and that makes me sad.

Meghan, Kara, Amanda, our youngest son Brian and I attended the DES, DDD, AZEIP rally. We got there a bit late, nothing unusual for us I am sad to say, as we drove up to the rally we were happy to see folks standing on the roadside with posters and nearly every motorist who drove by honked their support.

We signed a few petitions while we stood outside the lecture hall and we waited to see if there were any Senators or members of Congress there to address our concerns to, we did not see any, they could have come and gone before we got there, but I doubt it. There was a representative from the Governors office. I did not see this individual, but heard she was there.

There were quite a few early intervention therapists in attendance. Many have lost their entire client load; meaning they no longer have any income. We saw many families with their children; dozens of babies and toddlers in strollers, some children in wheelchairs, many children with Down syndrome as well. We saw a few people we knew from The Down Syndrome Connection. We saw Mandy, Amanda's OT. If you wonder if my girls lost their therapy, the answer is no, other than music therapy, no, not yet, they did not get state funded therapy. Our medical insurance pays for some of the girls’ therapy, 20 sessions a year and I wonder if they will be forced to take up the slack now that AZEIP is defunct. We were not at the rally because we lost something; we were there because so many others did.

The media may have been there and gone, I did not see their vans or any reporters. I did see two disinterested camera operators sitting on the wall outside of the meeting hall. Neither seemed to notice the people around them, it made me sad to think that the media did not feel it was newsworthy that thousands of families lost essential services and so many people lost their jobs. One camera operator was trying very hard not to make eye contact with anyone. He had an air of impatience while madly chewing on a coffee stirrer, eyes on his tripod. The other stared blankly into space, neither of them responded to questions directed at them, it was odd.

I am very concerned that this is the beginning of a very bad trend in our state. I worry that most people will shrug this crisis off, who besides the families affected by the budget cuts truly care? Since some of the people the hardest hit were welfare recipients, other people view them as deadbeats living off taxpayer money; so many people applaud the cuts to them. I heard some radio hosts say that foster parents do it for the money anyway, so who cares if they take a 20% cut in monthly allowance for the children they parent. Why should anyone care about children with disabilities; they cost the state of AZ too much money and aren’t their parents the whiniest of all, always asking for more services; those over-emotional people who feel guilty about having a disabled child, so they over-compensate by asking for more than their kids need...

Arizona a right to life state, it is inevitable that more children will be born with disabilities, but while they have the right to live, so many people believe that taxpayers should not have to foot the bill for their care after they are born, why should they pay for THOSE children and adults?

I hope my blog readers and friends know this is not what I think or feel, but what I hear and read in newspapers and hear on conservative talk radio. The detestable statements above come from them not me. My children are all just children to me, I love them all dearly, all eight of them. Three also happen to have Down syndrome. When we are shopping or at doctor appointments with our three youngest, people tend to see their Down syndrome and I honestly do not think many people think child or little girl when they see Meghan, Kara, and Amanda. So many say, "They ARE Downs, aren't they?" I believe we are seeing just how much value the state government puts on children and adults with disabilities through the budget cuts.

Let’s not forget that senior citizens are also affected by these cuts. Group homes housing adults with disabilities and the elderly are being closed all over Arizona because they have also lost their funding. Where will all of these people go? What does that say about who we are as a state? Does it make you feel proud that we attack the most vulnerable citizens when times get rough?

Rally today in Tucson for DES-DDD-AZEIP budget cuts

Friday the 20, 12:00 noon at Child Family Resources, 2800 E. Broadway. Stand up for our children and families affected by the recent cuts in services to Arizona's most vulnerable citizens. Do not let the state of Arizona rob our children of their futures in their efforts to save money.

Some Southern AZ legislators, a representative from the governor's office and the media plan to be on hand to meet with concerned families and efforts are being made to "rally the troops" to make a huge community statement.

Click on map to enlarge it

Thursday, February 19, 2009

ASBO International Summary of the 2009 Economic Stimulus Package for School Districts

Talk in our home lately has been about the future of education in the state of Arizona. To cut budgets in bankrupt districts they are riffing (reduction in force) teachers. Some have decided to cut their school days to 4 days a week; others are cutting clerical and support staff. No one is talking about cutting administrative staff; perhaps the bankrupt school district will use the stimulus money to pay these six figure income earners a bonus?

Tom teaches music, and being an arts teacher, he is concerned about his job, as are the other music, drama and art teachers in the entire district. Seems the three R's (reading, writing, arithmetic) teachers believe the arts are superfluous; never mind arts teachers also have DEGREES in education. Tom has a master’s degree in educational technology in addition to his general education and music teaching degrees. To the three R teachers, the arts do not make children better test takers...you will notice that history and science are also not a part of the subject areas schools emphasize currently?

Why can’t the short-sighted administrators see that math is used in science and music, and by taking both classes, children will use math in a meaningful way, that it reinforces their comprehension? Is it hard to see how art and math are used for creative yet technical jobs? History is important for all children to learn, yet it is de-emphasized during the school day; I feel that we must learn about our past to avoid repeating the same mistakes in the future, yet it seems that none of this matters any longer. They have science and history teachers showing students how to do a reading prompts for the AIMS testing here. Music and arts teachers tutor students in math during planning periods, a time when they should be preparing their classrooms and lessons for THEIR students. We test children to ascertain their proficiency, yet with the way teachers are forced to teach by the state, the children fail to gain knowledge of the world around them, as long as the test says they are learning, who cares...

Talk is also going around that the state of Arizona is going to return stimulus money for the floundering school districts to the federal government because they feel the teachers do not deserve it. Forget about the teachers, what about the students, what about my children, YOUR children?


Please, if you live in Arizona, call your state senators and congressman/women and express your concerns about the state of education in Arizona, especially where the stimulus money is concerned. We cannot allow this as parents, we owe it to our children.

Senators
Congressman/women

Not sure what district you are in, find out here: SEARCH

Prayers are appreciated for all of the teachers and therapists facing job loss.

You can read about the American Recovery and Reinvestment Act (ARRA) and how it will be applied to education below.

ASBO International Summary of the 2009 Economic Stimulus Package for School Districts ARRA_ASBO_Summary 2_17_09.pdf

Of course we are concerned about special education in our home (for obvious reasons), and this is a brief of what the 2009 Economic Stimulus Package will do for special education.

SPECIAL EDUCATION

Legislation includes $12.2 billion for the Special Education account. Within the total, is included $11.3 billion for Section 611 of Part B, $400 million for Section 619 of Part B, and $500 million for Part C of IDEA. These funds shall be provided to school districts over the period of two fiscal years to help mitigate the reduction in local revenues and state support to school districts.

The Department of Education shall provide half of these funds on July 1, 2010. Within the amount provided for Part C of IDEA, the Secretary is required to reserve the amount needed for grants under Section 643(e) and allocate any remaining funds in accordance with Section 643(c) of IDEA as specified by both the House and Senate.

The amount set aside for the freely associated states shall be equal to the lesser amount available during fiscal year 2008, increased by inflation or the percentage increase in the funds appropriated under Section 611(i) (Secretary of the Interior).

The legislation includes $2 billion for the Child Care and Development Block Grant. Of these funds, $255,186,000 shall be set aside for quality improvement activities, of which $93,587,000 shall be for activities to improve the quality of infant and toddler care.

In Arizona Department of Economic Security (you may need to sign up for the online to read this article, it's free) is cutting jobs, services, and the amounts folks get through foster parenting and welfare.

From and article in Arizona Central:
DES describes services being cut, eliminated

Associated Press

Investigations of some reports of potential risk to children and vulnerable adults are among services and programs being eliminated or scaled back because of budget cuts, the state Department of Economic Security said Friday.
Other impacts include eliminating a welfare program for disabled adults awaiting Social Security benefits, reducing in-home services for 4,000 children in the child-welfare system and imposing a new waiting list for child-care subsidies, the department said in a list of "major staff and client impacts" from the Jan. 30 budget cuts.

The department released the list one day after it announced that 9,000 of its 11,000 employees face furloughs -- mandatory unpaid time off. The department also said it plans layoffs but said it wasn't ready to disclose many.

Furloughs and layoffs of DES staff means that agency "may not investigate 100 percent of Adult Protective Services reports" and would not investigate all reports of "potential risk," the lowest risk category for reports, received by Child Protective Services, the department said.

A leading child advocacy group called the cutbacks "extremely destructive to Arizona's present and future" and called on Gov. Jan Brewer and lawmakers to find dollars to rollback the cuts.

"The first step is to appropriate the federal economic stimulus funds fully and responsibly to restore some of the services that were cut. The next step is to put on the table all of the fiscal options including temporary budget strategies and revenue increases," CAA President Dana Wolfe Naimark said.

I have learned that Arizona Early Intervention is being cut, this program provides therapy for children with disabilities from birth to age 3, in addition to this news, I received this letter today:

Cuts in Developmental Disabilities Services for Infants and Toddlers

As a result of the most recently announced Fiscal Year 2009 Budget Reductions, many infants and toddlers with Down Syndrome, cerebral palsy, autism, mental retardation, and significant developmental delays will lose all their Developmental Disabilities services. These critical services include physical therapy, speech therapy, occupational therapy and other Early Intervention supports. This group of children are among the most vulnerable in our community. As is well documented by a large body of research (National Research Council, 2001), intervention during the first few years of life is essential for these children to be able to have the best chance at being successful as they grow up. The rapid course of brain development during these first few years provides a window of opportunity for these children which can not be recaptured later in life. Early Intervention results in significant cost savings, due to a reduced need for special education in later years.

These cuts are related to the stipulation that individuals who do not qualify for the ALTCS (Arizona Long Term Care System) program will no longer receive State-Only DDD services. Unfortunately, the eligibility/screening process used to establish ALTCS eligibility was not designed to reflect the needs of infants and toddlers. It looks at functional skills expected for older children and adults (such as being able to be independent and care for oneself), and so infants and toddlers who will qualify as they get older and fail to master these skills do not qualify as younger children. At this point it is very rare for a child under the age to 3 to qualify for ALTCS, even if they have a diagnosis of autism or cerebral palsy.

Up until this current budget crisis, these systemic problems with the eligibility process have not had such drastic consequences. The long range solution will be to design a process which does capture the needs of this age group. In the meanwhile, it is of utmost importance to restore State-Only Developmental Disability services to these young children.

I received this letter today about a 65% cut in Music therapy for developmentally disabled children:

Due to the economic crisis that everyone is experiencing, DES has enacted a rate cut for ALL Qualified Vendors and Independent providers who provide services to individuals with disabilities. DES has stated that all contractors and providers will be required to take a 10% cut in rate. Given the current economic situation, this is to be expected.

However, DDD has singled out two services (Habilitation-Music Therapy and Habilitation-Communication) for additional, significant rate cuts for services that children with developmental disabilities are entitled to receive under Title 19. Music Therapy rates have been cut by 54% effective March 1, 2009. This is not a fair or equitable rate cut.

If this rate cut goes into effect your child’s music therapy services are in danger. Most agencies that provide music therapy, including mine, will be unable to maintain services with such a significant pay cut. It will make it extremely difficult for our agencies to survive on less than 50% of our current income and I will no longer be able to justify the amount of driving and gas expenses that I incur providing home based services in several areas of the valley.

We need your help fighting this unfair pay cut. I have attached a letter template for writing to your state legislators and urging them to address this issue. You can find your legislators and their contact information on this website:
http://www.azleg.gov/alisStaticPages/HowToContactMember.asp
You will need to write three letters, to your state senator and two state representatives. Please be sure to personalize this letter and share your thoughts on music therapy and how it has impacted your child.

AzMTA, the state music therapy organization, is working on other plans of action, including a rally at the state capitol, media coverage and education of DDD/DES officials. We need to make clear to the state the importance and effectiveness of music therapy. Any personal stories and testimonials you can provide to your legislators and DDD officials would be helpful. Please pass this information along to other parents, providers and special needs advocates, as the more noise we make, the more likelihood we have of saving music therapy services for thousands of children state wide. I will keep you updated with any other efforts and news I receive.

Thank you,
Erin Benaim, MT-BC

Meghan had been receiving music therapy, we had wondered why we never received a call to return, now we know. It is OK, we loved it,more importantly, Meghan loved it, but we did not get to attend long enough for it to be beneficial. I do wish we could do all we can for our girls with our own funds (a reasonable rate), but these programs cannot exist without grants from the government, despite parents agreeing to pay fees, it will not be enough.

Tucson families will not be able to turn to the Parks and Recreation department for alternative classes because the state is cutting those as well. Many of our lower income families simply cannot to pay the fees studio would charge for their classes (art, dance, music), Parks and Recreation provided classes for these families at reasonable rates. We do not know what the final cuts will be in these courses, but we are certain they will hurt many families and their children.

Do not forget that you do have a voice and you can write to your state government about these cuts. Maybe people making six figures can also take a 10-20$ pay cut too, just like my sons were asked to do in lower paying jobs. Those who are very well off could donate money to help keep important programs going. I do know that the way we were doing things was not working, and it is time to re-evaluate it. Instead of being reasonable, the government is having knee-jerk reactions to the economic crisis, and I feel they are making huge mistakes, mistakes we will pay for for many generations.

I know I wrote about my maternal grandparents before, they were migrant farm workers during the Great Depression. They learned to save and re-use everything, as did my parents, my grandmother had balls of twine and foil, and jars of buttons in her home, she had so much because she knew everything could be gone in the blink of an eye. I suppose you would need to sleep in a tent with 4 children to know why... I was raised this way as well (not not the tent, frugally), we have too much clutter because of the things I save. When I hear we have to learn to cut back, I wonder, from where? I suppose we could cancel our cable, Internet, and home phone? No but wait, Meghan attends school via the Internet, so no, we can't cancel the Internet, and it is part of a bundle, supposedly to save us money, but wait, they raised that price $17 in the last year, so it actually is not cheaper any longer.

We have cable because we no longer attend movies, the theater decided to charge for all children over the age of one last fall. That means we pay nearly $50 to go to a movie. we simply cannot afford it any longer. We attended our last movie at Christmas, and the theater was half full, you would think the management would get the message, if parents have to pay for children who sit in their laps, they will not come.

I have noticed the price of items at our grocery store have gone up by 10-15 cents or they are giving us less of the product and keep the price the same. when something is reduced by 2 ounces a serving, it makes a difference to a family of 6.

What we will do is plant a vegetable garden this year. I always had a large vegetable garden, but my energy was spent elsewhere for the last few years. I believe it is time to grow again. We will use our laundry water (we use natural detergent) to water the vegetables and will hope this will defray some food costs. I think co-op gardens will become very popular again. I would hope that families in neighborhoods would band together now and have pot-lucks, helping out other families who are struggling. We have become a nation who no longer cares for one another, but instead lock our doors and "nest" ignoring everyone and everything else out there. Maybe we are to partially blame for some for this mess too? My mother always said "Do not put all you eggs in one basket", well American families have done this for decades, we learned it was a bad idea, but then history has a way of repeating itself, do we ever learn?.

I am grateful that we have a home, have a reliable vehicle, have healthy children and good medical insurance. Have enough to eat and we have each other. I do not think we can rely on our government to bail us out of this, they seem to only care for the very wealthy and big business, and forget about the backbone of America, it's working families.

Monday, February 16, 2009

Monday musings

One of the reasons I love Arizona so much; our gorgeous sunsets. This one I took through the branches of our Mesquite tree.

Things are a little slower, but mommy has caught yet another cold, it is so hard to have a compromised immune system, and I get sick more than the kids. Hopefully this cold will be short and I can get on with panning our spring garden, I did manage to do 4 loads of laundry, and daddy came home early today, not having to work his second job (he has three) because it was Presidents day today. He did some of Meghan's homeschooling with her today; Handwriting Without Tears, Beyond Speech Therapy, and she and I did her music, even though it was art day today.

I liked this one of Meghan, she can be so goofy, asking me to take pictures, then ducking and weaving to prevent it. LOL I caught her here. She keeps telling us she loves her sisters, they still push each other down, vie for attention, and bicker over who sits on the swing, but they do love one another. Well, Kara and Meghan do, we are not certain about Amanda yet.

Julia took some of pictures of the girls, I Photoshopped a couple of them, Julia does such a good job with her pictures. She and I both love taking them.

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Our silly bag baby; Kara puts everything on her head, this bag was huge and open at the bottom, she will put leggings on her head and walk into walls too. We do not comprehend why Kara enjoys this, but it is pretty fun to watch. We keep all Ziploc bags out of her reach, she put them on and cannot remove them, pretty scary. I even go so far as to close them completely before I put them out of reach.

Kara loves to play with the mouse and she really looks like she knows what she is doing. After I snapped these pictures she threw the mouse and the keyboard off my decrepit desk.



Amanda has learned to climb on the sofa, and is exploring with her new found skill, the adrenaline rushes are wearing me out, she nearly falls off everything. Yikes.
Amanda on top of her new table, we use this for eating (sometimes) She is still yellow, we think we need to take her back to a doctor to be certain she is OK. She still has killer breath even after her teeth were worked on, the dentist said it could be from gum disease, but her gums look so much better. Truly, her breath is nauseating, it makes other folks want to put her down. Daddy and mommy hold her and love her despite the smell, she gets her teeth brushed more than the other girls though...

That poor top, she stretched it out beyond recognition, she truly is a little scamp, and adorable, sweet, funny, and hyperactive to the extreme.
This is her after I attempted to get her to drink water, she refuses to take liquids in a normal way, something else we worry about. Why a child would not drink fluids is beyond me, she will take a tablespoon at a time, but no more than that.

Saturday, February 14, 2009

Children with Down syndrome in Bulgaria need YOU

http://www.reecesrainbow.org/valentine2009.htm Please visit Reece's Rainbow and donate towards to the grant fund of one of these precious little children.

I am thinking if only our house was not so small, we could go to Bulgaria...

Can Parents Force a School to Evaluate Their Child?

Can Parents Force a School to Evaluate Their Child?

http://wrightslaw.com/

"Is the school forced to do psycho-educational testing when the child's school team agrees that testing would not provide information relevant to the child's educational planning?

The foster parent and court advocate want the child tested anyway. Does the school have to provide information from testing?

This child fits every exclusionary clause from special education written, and testing is not needed when the classroom teachers are making accommodations and modifications."

Can a school be "forced" to do something they don't want to do?

Let's frame the question another way.

Does the law require the school to test the child? Yes.

Is the school required to comply with the law? Yes.

Read more on Wrightslaw.com

Sunday, February 8, 2009

Trying swim lessons again

Meghan began swim lessons last year, but an unfortunate lesson made her fearful of the instructor and the water, so we decided to take time off, and her
instructor decided she needed a new person to teach her. Her first lesson was yesterday, she mostly sat on the steps of the therapy pool and played with the instructor and I got in the water and swam around a little.
I am in pretty bad shape, was huffing and puffing and my muscles fatigued much more quickly than I can ever remember them doing. I miss the water, though my skin hates the chemicals in it, and I itch for days afterwards. The water in swimming pools is full of carcinogens, mostly from chlorine killing off organic substances (leaves, flowers, etc) and creating trihalomethanes (THMs)
and haloacetic acids (HAAs). Makes me want to swim in a fishy smelling fresh water lake instead. I wish there was one close by.
Despite the chemicals (and I am very concerned about them) I think that it was a good retry for Meghan and hope our Saturday mornings will be spent at the pool, just she and I. I will find something to offset the risk of the exposure to the THM's. Maybe we can go out for a cookie or ice cream afterwards. She needs some special mom and Meghan time, I know she misses it.
I just thought this was a sweet picture of she and Kara, Kara has been having a rough time of it behaviorally, and it is good to see her sitting calmly. Once again Amanda was sitting on the ground, she is learning to climb up on things, though Kara and sometimes Meghan push her back down, not ready to share their "territory" with her too.
We are all adjusting to our new life with three young girls, the hard part for mommy is the isolation and often loneliness for adult conversation and company. This too shall pass, I know it, I don;t want to wish for this stage to rush by, because it will never return, hard as it can be, we are making memories and building bonds.

We have been having awesome weather, in the high 70's to low 80's. Today it is raining and colder and they say it may snow, now how is that for insane? Though we did get some hail, snow seems a remote possibility, The girls were upset they could not play outside today, but Amanda and Kara sit on the ground, and it was wet and cold. We will get some cold weather for a week or so, and then warm up to early spring, it is nearly time to sow the seeds for the vegetable gardens and to plant tomatoes and peppers. If we wait too long, the ground gets to hot and the plants do not develop good root systems.
Our weather forecast says:
Currently: 46°F
Light Rain
56°F 41°F
Tomorrow
Partly Cloudy/Wind
64°F 42°F

Tuesday
Showers
55°F 30°F
Our television died, now some will say good, who needs them, but we do enjoy our programs and DVD's and it is a must here. Happily our oldest son Fred got a new TV and we inherited his old one. A large flat screen; not a plasma or LED TV, but very nice regardless. We are so grateful to him for his gift.
We had a relatively lazy day today, and that is OK, our days (weeks) are full of therapy appointments, doctors appointments, homeschooling, and just regular family chores, so a down day is very welcome here.

Thursday, February 5, 2009

Awesome experience for a great young man

http://today.msnbc.msn.com/id/26184891/vp/29030653#29030653

I bet they are wondering why they did not let him play sooner!

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video

WDSD