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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

Monday, February 22, 2010

Does anyone truly listen when we advocate for our children?

Yesterday I was part of a huge battle; a battle for the dignity of my three youngest daughters . It took place on Facebook and was waged against a group of teenagers who felt it was extremely witty to ridicule people with Down syndrome and other people with disabilities as well as liberal use of the N word and R word over and over again, some of their posts were depraved, sexual content, pornography, everything a parent would be proud to see I am sure.... They also copied pictures of people with Down syndrome off of every site they could and posted them, making fun of them. It wrenched my heart and offended me.

The problem with Facebook or any other social network is a persons ability to open a new account within minutes. Parents and friends of people insulted reported each racist and bigoted post this group made, and while one group would get shut down, these poor misguided and very hateful children would open another, bragging that no one would stop them from doing what they wanted. However, their identities could not escape the parents of the children they maligned, and they have had to face the consequences of their actions. A lesson we all need to learn I suppose, there is no such thing as anonymity while you are on-line. I do not think for a minute that they will be miraculously healed of their hateful bigoted attitudes. But maybe, just maybe this will make them think...

I went to bed with tears in my eyes, soul weary, just so sad, I am tired of fighting ignorance, hatefulness, bigotry, and stupidity. I want the world to be a fair place with total equality for every human being, I want something the human race is incapable of.

I woke up and believed today will be a better day, and then read about this:
http://www.newsleader.com/article/20100222/NEWS01/2220318

In part it said:
State Delegate Bob Marshall of Manassas says disabled children are God's punishment to women who have aborted their first pregnancy.

He made that statement Thursday at a press conference to oppose state funding for Planned Parenthood.

"The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children," said Marshall, a Republican.

Another slant on the whole "Having this child has to be your fault" belief system, I have to say, their God is not mine, He does not punish anyone, let alone my innocent children. I am not going into the whole abortion issue, which is why he talked about this in the first place, I believe he is making a preposterous statement to get a knee jerk reaction, rather like the children on Facebook yesterday.

Truly, I suppose no one is without sin, I know that when Meghan was born an ill-advised Christian friend said to me;"You must have committed a terrible sin to be cursed with a Down syndrome baby". I was floored and sadly that ended our relationship.

Yes, it is not easy to hear your baby has Down syndrome, though my pain in hearing about my daughter was not that she was born with Down syndrome, it was the sadness knowing she would not be treated like a whole person by the majority of the world, that people would veer away from her and hateful misguided people would try to hurt her. We hurt that which we do not understand.

I look at my youngest three and see whole children, just as HF wanted them. I have never met a perfect child, all of them have different issues and quirks that make them uniquely them, but I think I have begun to live in a bubble, a bubble I created to block out a world that cannot and will not see the beauty my girls possess. I surround myself with friends who also have children with Down syndrome and subconsciously avoid others. The few people I let into my bubble have to love and accept my girls too. The others have the door shut in their face, I have no room in my life for people who carry hatred in their hearts.

How far is too far to protect our children? They have to live in the world too, to be a part of this imperfect and sometimes cruel world, where do we find balance in a imbalanced society? Honestly, I do not have an answer to that question, but I will be praying and dreaming about this for a long time, to try to find a solution that will work best for us.

Will you pray too?

Monday, February 15, 2010

TUSD Superintendent Dr. Fagen to Deliver the "State of the District"-more school budget cuts covered tonight

Tonight, February 15

Superintendent Dr. Fagen to Deliver the "State of the District"
& Chief Financial Officer Bonnie Betz to present 2010-2011 school budget information
This meeting is especially relevant to all TUSD parents, educators, and community members who are interested in knowing the most current information on TUSD's future outlook and the school funding process for next year. The meeting is open to everyone and it is highly recommended that all School Council and SCPC members attend.

When: 6:00 p.m

Where: Catalina Magnet High School Auditorium

Friday, February 12, 2010

What is on your mind?

Outside my window.... I am happy to see blue skies once more, I love the rain, but my girls were stuck in the house all day because Amanda cannot walk, and sitting in a freezing cold puddle of water is not a good idea. Kara cannot take cold weather and lasts outside about 5 minutes, Meghan could sit out in it for hours if she had a Zune to watch, she loves her hand-me-down Zune.

I am thinking...about human nature, this week some of the stories on the news and newsletters I receive have wounded my heart, I often feel I have heard the worse possible story and then another crops up that shocks me to my core. We humans have been preying on one another since the dawn of our existence, and all the modern technology we live with has not evolved our violent tendencies. I am saddened and often wonder if we will ever change?

I am thankful for...my family, always and forever.

Today Amanda played with a baby doll, she hugged it, licked it, giggled, and stared into the dolls face, played with her hair, tugged on her dress. SHE PLAYED with a toy in a meaningful way and my heart rejoiced, she did not know how to play when we adopted her. Even Meghan realized how significant that moment in time was and beamed one of her glorious smiles at me. Despite being sad about the state of mankind, having my children has been the greatest blessing to me.


I am learning...that I can speak up about injustices even if it is not a popular subject; even though I am certain others will disagree and possibly be offended by my point of view. I detest the terms "Conservative" and "Liberal" assigned to anyone who does not agree with the others ideology, I have been called both, I am neither. I would be ecstatic if those two terms left our countries language, to me, their use is as offensive as the R word is.

From the kitchen...the sink of dirty dishes calling to me. Julia is out of town at a choir event, and her job becomes my responsibility. Once we eat lunch, I can get that done!

I am wearing...my pajamas, yep, still in them, been a busy morning playing with my girls, homeschooling...

I am creating...Meghan and I made winter pictures yesterday, we had foam stickers of snowflakes and snowmen and she enjoyed putting them on her blue paper. I left her to try one by herself and she decided to place dozens of snowmen on her picture, some upside down, some sideways, her very own work of art!

I am going...to see Brian in a new production on Valentine's Day. Tom, the little girls and I will be attending.

I am reading...my new Body and Soul magazine, a yearly birthday gift from my friend Becky. I have been reading a lot about print materials becoming a thing of the past, I have to say, I do not think an electronic device will ever take the place of a old book for me. Besides being a great keepsake, a good book will never run out of power and need new batteries in order to be enjoyed!

I also worry about availability of specific texts if we go 100% digital, will the groups who want certain books banned rid the world of the supposed offensive texts once and for all if books are no longer available in print form?

Around the house... I see a dozen toys and items I need to pick up.

One of my favorite things...a sleeping child's peaceful face; Kara is napping on the sofa right now...

A few plans for the rest of the week: Laundry, tree trimming, and many items from the honey-do list that could not be done because of rain. It is time to prune some roses and trees!

Here is picture for thought I am sharing...Happy Valentine's Day

Thursday, February 11, 2010

On a side note

When I was undergoing cancer treatments and the subsequent surgeries to reconstruct what I lost to cancer, I was fired. They reasoned that my substitute could do a better job than I because he was not ill. Apparently a lot of people with cancer are fired; we are substandard employees because we cannot work as long or as hard as we used to.

While undergoing treatment and surgery, cancer patients are covered under the Americans with Disabilities Act ( a new addendum to the law makes what my company did harder to do). I decided I would talk to someone at the Attorney General's office about this, as I felt my workplace violated the ADA. I left numerous messages, I did not hear back. I had to request the help of a federal senator to get the ATT Generals office to answer my phone calls. I wrote a very long and impassioned letter to him and Senator Mc Cain sent a letter to and called the Attorney Generals office instructing them to call me and set up an appointment. They called that day.

During my first appointment I spoke to a civil rights lawyer who told me, yes my workplace broke a law, but that most places get away with breaking ADA laws because no one reports them or holds them accountable. It is not until they get caught doing something wrong that they actually follow the letter of the law. Being caught usually means being sued. The lawyer called in my ex co-workers and bosses and got their side of the story. After they were through, I was called back to hear a summary of what was said.

These people, some I had worked with for 17 years, LIED, they had stories about my lack of responsibility, my frequent calls in sick, and they felt justified in doing what they did "For the good of the business". "It was not personal, they were not doing a thing wrong, just protecting their investments"....what? It was personal to me! I could scarcely believe my ears. I listened to the machinations of my bosses in disbelief, sitting there in shocked silence, my mouth agape. The lawyer told me most people lie to get away with something…did I really expect them to tell the truth? I had told the complete truth, keeping careful records (I was a list maker, having to write everything down to remember it later because I was cognitively impaired by chemotherapy, a condition colloquially called chemo brain) so yes; I expected them to be truthful. Was I na├»ve, yes?

It was determined that I could take them to court, but the attorney cautioned me it would get ugly, and she felt that the stress would be very bad for me. I had time to decide what to do, and I did some soul searching, but my decision was made for me when the health club closed down for good months later, coincidentally just days before my claim had expired. Karma?

What struck me most in this entire ordeal was the one statement the lawyer made "These people get away with this because no one will do anything to stop them". Be it not installing a wheelchair ramp, or not allowing someone to work half days because they have cancer, not allowing someone with diabetes snack breaks. Believe me, the post chemotherapy-post surgery part of cancer recovery is not an ideal time to take on unscrupulous people. There were days that all I could manage was a shower, spending endless days sleeping while my body healed, joking that I felt like I was half dead and was slowly coming back to life. (not everyone has that level of fatigue with cancer treatment) I saw more TV those few months than I had in years.

So why am I even talking about this? Why? Because once again the ADA is being completely ignored while state governments decide to cut budgets by cutting aid and services to their citizens with disabilities. I have not forgotten the pain it caused me to be dismissed so rudely, not to mention the financial losses. It was demoralizing. I do not want that to happen to anyone else.

So what, right? Who cares, as long as taxes do not go up…(insert sarcasm) When you hear “disabled person” do you think of someone like my daughters, or your elderly neighbor who is using a wheelchair to get around? Not contributing members of society, right? Isn’t that what I hear detestable talk show hosts say about people like my daughters? Who should care about them? I DO

Many folks believe that being disabled pertains to people born with genetic disabilities, or birth injuries. However, there are millions of disabled Americans, people who were hurt in accidents, like my cousin Danny, who was made a quadriplegic by a drunk driver when he was 18. Or cancer patients who were once robust and healthy, now weakened from radiation or chemo tearing down their bodies, all done to save their lives. Maybe your wife had a stroke while on birth control pills? Or your husband or father had a heart attack at age 45 and suffered hypoxia to his brain? Maybe you are someone with severe arthritis? All disabilities and all covered under ADA.

I think it is common for a society to dismiss those who they feel are less than ourselves, I do believe that how we treat people who need the most help defines us as a society. In my heart and mind, America is currently getting a D-.

I am hearing about the wealthiest among US citizens sending billions to offshore accounts to save their money from additional taxation. The government WILL NOT take their money, they worked hard for that by golly, no way is it going to be used for anything other than that new jet, a villa in France, or to buy an island! They have within their power to help America recover from this recession, but they choose to help save themselves instead.

We have also watched the news and heard of a company (s) who gave billions to employees as bonuses. That was our money folks, ours and our children’s and our children’s children.

I admit, I am getting a headache, I sit at a desk with Gandhi's quote affixed above my head; "Be the change you wish to see in the world". I do what I can as an average citizen, I call our state and federal governments, write emails, sign petitions, and attend rallies when I can. Does it help? Maybe if 100 friends did it as well, and 100 of their friends and so on. Can I sleep at night if I do nothing? NO, I am driven to stand up for what I believe in.

I urge you to go to www.defendingourfreedom2010.blogspot.com . Read my blog post after this one, can you do anything to help stop this trend?

From ARC -Americans with Disabilities Act-budget cuts

I thought this was too important not to share, please read through it, most of my readers have children with Down syndrome, we do not have to sit by and hope things change, make your voices heard, call, write, and visit the blog mentioned below, there are hundreds of thousands (maybe millions) of us, we can make a difference.

DEFENDING OUR FREEDOM: ADAPT's Call to Action for Home and Community in America. (2/2010)

We The People hold our government accountable for enforcing our rights.
As the 20th Anniversary of the signing of the Americans with Disabilities
Act draws near, the disability community is not busy celebrating because
we are literally in a fight for our lives and our most basic freedoms.

Eleven years ago, in the Olmstead decision, the Supreme Court said that
Americans with disabilities have the right to live in the most integrated
setting. Yet today, states are responding to budget shortfalls by
drastically cutting home and community-based services. These draconian
cuts are forcing seniors and people with disabilities into nursing
facilities and other institutional settings because they don't have the
services they need in the community to remain independent.

As states cut vital services, the federal government, which is charged
with protecting our civil rights and enforcing the law, is simply standing
by - silent - while Americans with disabilities have their most basic
freedoms taken away by the states.

The disability community cannot sit by as our freedom is negotiated away
in back room budget deals. We must take action!

DEFENDING OUR FREEDOM
is a three-prong national campaign initiated by ADAPT to organize the disability community to:

* Demand that the Obama administration fulfill its duty to
aggressively protect the civil rights of disabled Americans and enforce
the Americans with Disabilities Act/Olmstead decision;

* File complaints with the Health and Human Services Office for Civil Rights and the U.S. Department of Justice that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced as well as complaints that document the state policies and budget cuts that violate our rights; and

* Document the disability community's efforts to fight back against state cuts so that we can learn from each other's efforts, rally others to join our fight, and hold public officials accountable when they do not support our freedom.

I. DEFENDING OUR FREEDOM: Demanding action by the Obama administration. The federal government is responsible for enforcing federal law and assuring that states comply with the Americans with Disabilities Act/Olmstead decision. ADAPT is demanding that the federal government
affirmatively and aggressively enforce the Olmstead decision. To do this,
the Health and Human Services Office for Civil Rights and the U.S.

Department of Justice, must:

1. Accept, investigate and resolve individual and systemic complaints
which document state policies and budget cuts that threaten the freedom
of Americans with disabilities;

2. Develop specific benchmarks/criteria for assessing state compliance, and holding them accountable. with the Olmstead decision, assess the states and publicly release this assessment on an annual basis;

3. Conduct regular, on-going compliance reviews of states for compliance with the Olmstead decision;

4. Develop "most integrated setting" criteria for determining when DOJ will step in and affirmatively enforce the Olmstead decision whether or not there has been a complaint filed ;

5. With CMS, review state submissions for modifying their Medicaid State Plan and HCBS waiver services for the impact that these changes will have on the state's ability to comply with the Olmstead decision so that those changes which limit the freedom of Americans with disabilities are not approved by CMS;

6. With CMS, modify Section Q of the Minimum Data Set so that people who indicate they want to return to community living are actively assisted to do so;

7. Publicly report on the progress that has been made so that these results can be discussed in a potential meeting between Georgina Verdugo, the HHS/OCR Director, and ADAPT representatives.

ACTION TO TAKE: ADAPT is urging organizations across the country to sign
on in support of these demands. If your organization would like to support this campaign, email DOF.signon@gmail.com


II. DEFENDING OUR FREEDOM: Filing complaints to protect our freedom

The Health and Human Services Office for Civil Rights and Department of
Justice are charged with protecting the civil rights of Americans with
disabilities who want to live in the most integrated setting. Although they are able to affirmatively enforce the law without specific complaints, these agencies typically take action only when complaints are filed. We need to file complaints that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced. We must also file complaints that document the state policies and budget cuts that steal the freedom to we are entitled under the Olmstead decision.

ACTION TO TAKE: ADAPT has prepared a form you can download and fax to us toll free at 1-888-324-0787. We will forward your complaint to the Health
and Human Services Office of Civil Rights, the appropriate HHS/OCR
Regional office, and the Department of Justice. If you choose to file
your complaint yourself, please notify us at DOF.complaint@gmail.com that
you have filed a complaint and, if possible, send ADAPT a copy.

III. DEFENDING OUR FREEDOM: Fighting back and sharing our stories
Even though there are different battles in individual states, we are fighting the same fight. To strengthen these efforts across the country, our campaign will collect personal and state stories about the effects of budget cuts and the efforts to fight back against them. ADAPT has created a website www.defendingourfreedom2010.blogspot.com where we can post information and pictures of your advocacy. This will create a public record of the disability community's efforts to stop cuts and hopefully inspire others across the country to speak up and speak out, too. State advocates can also submit individual calls to action so that we can support each other's efforts.

ACTION TO TAKE: Send submissions to defendingourfreedom@gmail.com . And remember to keep up on what groups are doing by reading the blog:

www.defendingourfreedom2010.blogspot.com

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at
http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects.

To contact Steve Gold directly, write to stevegoldada@cs.com
or call 215-627-7100.

Ice Skaing Special Olympics





One of Meghan's favorite movies is Ice Princess, i think she would like to try ice skating, wish we lived somewhere where it was more possible. Our kids can do anything, they may not do triple toe loops, but I am so proud of this little girl here.

Friday, February 5, 2010

Thursday, February 4, 2010

The Simple Woman's Daybook

My friend Debra has a beautiful blog, she writes from the heart, and her posts are always thought provoking.

She was talking about trying to find subjects to ponder in her blog and she found this:

Outside my window....

I am thinking...

I am thankful for...

I am learning...

From the kitchen...

I am wearing...

I am creating...

I am going...

I am reading...

Around the house...

One of my favorite things...

A few plans for the rest of the week:

Here is picture for thought I am sharing...

Sometimes I click "new post" and just sit here not knowing what, in the hundreds of things happening daily, should I share, if anything, or I will begin a blog post and Amanda,Meghan, Kara, Julia, Tom, a cat...will need something, or I need to change diapers, or the phone rings, and my train of thought is disrupted and I find I cannot get back to the same line of thinking. I have more drafts than I have posts, truly. Once in a while I read through each draft and then delete them. Sometimes I save them in a journal I keep, knowing that some thoughts are best kept to oneself.

I am hoping that once a week at least, I can use the Simple Woman’s Daybook as a way to post something relevant about our little family and our lives.


So here goes, for today at least:

Outside my window.... I see growing clouds, the last few weeks we have been getting sorely needed rain, though it traps the girls in the house, our back yard is landscaped in mud and more mud. The rain is bringing the desert to life, this spring we will have a plethora of bright blooms to enjoy!

I am thinking...of time away, it has been on my mind a lot lately, just a few hours, half a day, something to renew my mind and spirit, I love my girls, but I need Me time.

I am thankful for... my health, my family, having a home to live in, a car that runs, and friends who listen without judging me.

I am learning...that even at age 50 I learn something new every day.

From the kitchen...it is lunchtime, Amanda is standing at my elbow reminding me that she is ready to eat. She will have her food, Kara ate cucumbers and apple slices,and chicken, corn and black bean chili, Meghan is eating just the chili, she does not like veggies like Kara does.

I am wearing...old workout pants that are too tight, a polka dot tee and pink flip flops, I am proud of myself for getting out of my pajama's today, some days I wear them all day...no need to get clothes on when I rarely leave home, except that I prefer to be dressed in my day clothes, it makes me feel more productive!

I am creating...nothing at the moment, but I planning my garden for the spring. Deciding which trees to prune, and getting ready to prune my 40 rose bushes. What I do now will create the garden I want later.

I am going...no where soon, I am hoping we can go to Brian's new play next weekend.
I am reading...The Tao of the Defiant Woman, it is a very short book, but relevant to my stage of life right now.
The five principles of the Defiant Woman show how to defy outdated stereotypes, self-defeating behaviors and limitations, while maintaining inner peace:

• Recognize that your body is changing and be thankful that it continues to work as well as it does

• Understand that your relationships are ever evolving and you’re a work in progress too

• Treasure your friends and draw strength from the community of women

• Seek positive role models and strive to be a like example for those younger than you

• Know that the world too is continuing to develop and be content because there is always something new and exciting to learn

Around the house...I spend my days juggling cooking, cleaning, enjoying hugging, kissing and feeding, changing, and teaching my three youngest. Being an ear, a shoulder and a friend for my teen, and looking forward to my husbands arrival back home each day. With no outside job to go to now; it is just me, my family, and my home.
One of my favorite things...being awake after everyone has gone to bed for some quiet time alone with Facebook and my games, it is a nerdy thing I love.

A few plans for the rest of the week: Sunday is Eric's birthday, we will be eating cake and enjoying his company

Here is picture for thought I am sharing...

Brian, our youngest son, is talking about leaving our hometown. I knew that my children would likely decide to make their homes some place else, and we knew Brian had his eyes and heart set on NYC, he is an actor, so it makes sense to him, though he is talking of going someplace else for now.

It brought to mind our 4 days at the Equine retreat at the now dissolved Sunstone. We were supposed to get a horse to do what we wanted it to do; to walk over a rope, to pick up his foot, to run in circles. We had found that we really could not exert our will over the horse in the way we envisioned, instead, the horse had to decide that he wished to do as we asked of him. He had to know that we had the inner strength, the confidence in yourself.

I am hoping that my son will remember that we cannot force the life we want, having goals and dreams is important, but we need to be ready for each new stage and I am praying he is ready for this one. I am not certain that I am...to have him so far away with a limited income, it feels like we will never see him. That makes my heart thud, because he will be too far away to rush to his side if he needs us. (he has been on his own since he graduated) Letting go is the hardest lesson a mother has to learn.

Tuesday, February 2, 2010

Responding to comments

The dust storm we had a few weeks ago: I think it is appropriate for what is happening to AZ families in the disabled community; our Government is losing sight of what is important for our children, visibility for a positive outcome for those who need the most help is unclear, and our eyes are tearing and bloodshot from the dust blowing into them from the bureaucratic double talk.

Dawn said: I feel for you with 3 receiving services.... I pray that something can be done to give your girls as well as so many others the services needed.I heard they are also talking about canceling AHCCCS. No more low income families will have health insurance.

No, the girls are too old for early intervention, they are part of the long term care program. Though the state is considering cutting habilitation . which pays for Meghan's private swim lessons, she is terrfied of water, but getting better thank goodness, and respite, which pays someone to watch your child (even adult children) while you get away for a few hours.

I am certain that parents who do not have children with disabilities will think it is only fair that we pay for those things anyway, since they have to pay for babysitters for their young children, and swimming lessons as well. I believe that is one reason why it will be so easy for the government to cut those things. No one outside our community understands the need for therapy or habilitation. They think it is unnecessary, and completely ignore data proving otherwise. So much for evolution, I believe we are devolving as a society where the community with disabilities are concerned.


Dawn said:
I have seen some families in the USA go through the adoption process here in the USA. I have seen the hurt that the children and their soon to be families being torn from the tug of war. I am currently watching a friend fighting to adopt a little girl she loves so much. Her mother has taken her back and since she is in jail she is having a friend care for the little girl. The little girl born with drugs in her system is staying with mother's friends that are now abusing the poor girl. Why won't someone help this poor little angel?

Dawn, her story is too familiar. I know that most workers at CPS do the best they can, but they are understaffed and underbudgeted. That is how little girls like the one you describe slip between the cracks. I write that, but it is no excuse, they are not doing their jobs as well as they should. Our foster care system is not perfect either, I wish that more attention would be paid to those neglected and abused children, that someone would help before the children are emotionally scarred for life. Who is protecting our kids? Maybe if our government would stop cutting funding to programs and organizations that protect children, these things could not happen?

Leah said...
I have two friends who have adopted domestically who's children were reclaimed. One adopted a set of twins, who were reclaimed by the birth mother at 6 months old! (two days before their final court date.) The other was adopting a child out of the foster care system. The brought her from CA to MN. The birth mother hadn't had contact with her for three years, but upon hearing her daughter was being sent out of state decided she wanted contact. She ended up reclaiming her daughter after she'd been in her soon-to-be adoptive home for 6 months.

That said, there is another, brand spanking new devision of Reece's Rainbow, called "Connecting the Rainbow." There ARE families in Eastern Europe who are keeping their children! Like you said, they have NO support!!! However there are small pockets of parents coming together to form support groups. The ultimate goal of Reece's Rainbow is to eliminate the need for the organization to exist. That's where Connecting the Rainbow comes in. We're working to support those parents who've taken the leap of courage and are keeping their children. To provide them with the information, tools, and other resources needed to help their children reach their full potential. Please go visit, and see how you (and your readers!) can help us Connect the Rainbow, one family at a time! http://www.connectingtherainbow.com/

Leah, domestic adoptions can be so heart wrenching, (so can international) I do not think I could go through that, 6 months and then she is taken from her family? How terrible for everyone. Now she lost a mother twice, I wonder if she will bond with her birth mother now?

I am beyond thrilled to hear about the brave families in EE who are choosing to parent their kids with disabilities, that is the best news. I will be praying their governments give them the support they will need, if the special needs children in orphanages get funds, so should those outside them.

The site has so many of the tiems we currently use, when we are done adn if our items are in good condition, we will pass them on to CTR.

Alice said...
What beautiful girls you have! I love the cat, too! She looks very like one had for 15 years!

Alice, Oh thanks you, I have to agree, I think they are beautiful too!
Harpy is such a bratty cat, she likes to chew my storage boxes to shreds, they are made of cardboard, and she is very vocal, always scolding us with her meows, hence her name, LOL. Her mother gave birth to her in our laundry hamper! She was the only kitten, so her mama took two kittens from another mama cat and hid them under our bed and raised them too! Yes, we had three mama cats give birth around the same time.

Leah said...
A (now 13) started puberty at 9, and she just got her first period last week. For two years we were told "any day", and for two years I told myself I wasn't going to freak out about it. LOL Then, when it finally happened, we were in such a hurry to get out the door for an event that it really was a non-event! Not only that, but later that evening while collecting laundry from her room I discovered she'd had it for a day or two before! Either she didn't know what was going on, or thought it was something else. Who knows! Thankfully it was so light that it wasn't a big deal.

As for voting? People with Down syndrome can vote! Or any body else with a disability, for that matter. And yes, I will absolutely 100% be coaching Angela on who to vote for when the time comes!

Leah, I am not looking forward to dealing with the all of that, I keep thinking of the films we watched in 5th grade; "Growing Up and Liking It". Of reading that little handout over and over and preparing for the day. Thing is, Meghan cannot read well, so she will not be hiding in her room like I did, being very secretive about the great mysteries of approaching womanhood! LOL

I know of age people with intellectual disabilities can vote, I was talking about the children who were losing services. Though I know their parents will not go down without a fight.

Alice said...
I understand how you feel about the puberty issues. We were very sad to discover that A hit puberty in the 10 months since we had last seen him. We are trying to balance out the issues. So we watch Blues Clues for what it teaches him, Ben 10 for age-appropriate monster action, and try to deal with issues a little boy who wears a size 8 shouldn't have to deal with. I just wish the hormones would have given him 1 year home to adjust before hitting.:(

I will keep praying for you and your girls. You really have your hands full. I hope you can get a few hours respite. I so appreciate 15 min. to myself!

Oh Alice, Poor A, that is a lot to deal with all at once.

I hope respite will happen for us, our son is supposed to get trained so he can be the provider, even if he came and I could spend two hours gardening without interruption it would make a world of difference to me. I also know hubby and I would enjoy a night away once in a while. I spend everyday all day with the girls. I love it, but it can also be very tiring when all three are not behaving well.

Monday, February 1, 2010

AZ Families to start feeling brunt of DES cuts

Here we go again, why not take away from the most vulnerable citizens, children with special needs. Please pray with us that by some miracle these families will find what they need to continue their services.

Families to start feeling brunt of DES cuts

Intervention care for disabled babies not covered for all

Posted: Sunday, January 31, 2010
By Patty Machelor

ARIZONA DAILY STAR read article here

Families receiving services and support for babies with possible developmental disabilities will soon shoulder the cost.
Early-intervention services for at-risk infants and toddlers are federally mandated, and have traditionally been offered without expense to Arizona's parents.

Now, the state is in the process of gathering financial information from 2,509 families and caregivers. Families are required to sign an "acceptance of cost" form by March 1, according to a recent letter from the state's Department of Economic Security.

It is unclear how many will continue to receive free services. Parents and legal guardians with incomes below twice the federal poverty level will not be charged. For a family of four that would be $44,100. Parents with more than one child receiving services will need to pay for only one child.

Brooke Myers, an early interventionist with the nonprofit Desert Survivors, said there's "a lot of panic" among families already struggling to pay medical bills for their at-risk child.

"These parents already have a lot of co-pays from that," she said. "Asking them to now pay for something that's a lifeline is very difficult."

Desert Survivors provides support to parents and services to children. Myers estimates 75 percent of the 21 families she currently helps will have their funding cut. She said two families a colleague worked with have withdrawn already because they can't afford a co-pay.

Arizona's Early Intervention Program falls under the Individuals with Disabilities Education Act, and is implemented, in part, through the state's Division of Developmental Disabilities, said DES spokesman Steve Meissner. Federal guidelines permit states to establish a system of payments, and several states already charge for services on a sliding scale.

"It's a choice that we made reluctantly," Meissner said. "Our resources are shrinking, and we had to absorb a number of reductions because of the state's fiscal crisis."

The state does not reimburse families directly for these services but pays the provider, Meissner said. Providers, mostly therapists, might also bill a family's insurance or, for those who qualify, Arizona's Health Care Cost Containment System's health plan.

Families with an adjusted gross income above 200 percent of the federal poverty level will pay based on their income, family size and service costs. The co-pay will be based on a family's 2008 federal income tax return. Meissner said any changes since then, such as job loss or a new baby, will be factored in.
Maureen Dykinga, a speech - language pathologist, said the change is frightening for providers, who don't want to lose clients or see children go without services they need.

She said some providers will try to find ways to help their clients continue with services, even if the family can't afford it.

"There are going to be families who can't afford a co-pay at all and so there will be children who go without services, without a doubt," Dykinga said.
Monica Attridge, an administrator with the Arizona Association of Providers for People with Disabilities, said the recent letter follows cuts to service providers in May, when state reimbursement dropped to between 82 and 85 percent.

"The cuts have been fairly invisible to the families," she said, "up until now."
Contact reporter Patty Machelor at 806-7754 or pmachelor@azstarnet.com.

Beautiful artwork featuring children

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WDSD