31 for 21-10-10-10- Living in the now

I spend so much time looking for information about Down syndrome, reading some of it incenses me, and that makes some posts long and I think overly negative. I have two unpublished posts for this challenge, both are about issues that make me angry, and I got lost writing them, I may go back and edit them when I am not emotionally raw. Maybe post later on, I don't know right now.

The one abiding truth for me and my daughters with Down syndrome is that we love each other. Sure they can get into everything, they can have behaviors that drive me bonkers, and mommy can be having a bad day and be grumpy herself, but all I have to do is sit down on the floor and 3 adorable girls are on top of me hugging me and kissing my cheek, smiling, laughing. As I sit there holding my daughters, I feel like the luckiest person on earth.

Yes my typical children loved to sit with me too when they were tiny tots, but they always had their minds on the next thing they wanted to do, they were busy, they moved fast, so with them it was "Here mom, take a hug, can I go now?" We love one another too, and I am so lucky to have them in my life, but their minds were in the future, the little gals live in the now.

This is just one of the many things I love about my little girls.

31 for 21 derailed plans

I actually have two very long posts for the blog from today and the 6th, but I cannot find the emotional energy to finish them, I may not complete the challenge. I am so sad after yesterdays news, I need time to regroup. No one should ever lose their child, not for any reason. I am heart sore for Renee's parents.

Please continue to pray for peace for the Blanchards.

31 for 21-day 9-What do you see when you look at my children?

Julia had a birthday on Thursday, and the little girls, Julia and I went shopping for her birthday presents.



We put Kara and Amanda in the big red stroller and Meghan walked along side us, she actually is doing pretty well on our shopping trips, staying close to me, coming back fast is she gets too far ahead. She does like to push her dad's buttons though, and runs off on him sometimes. (poor daddy)



We went to the mall; not my favorite place, the mall rats pushing their way through everyone, the vendors in your face from the kiosks, the rude stares. Julia wanted boots from a specific mall store, so I relented, the day was about her, not me.



She was excited to be picking out things to wear on her birthday, it is fun to shop with her. Taking the girls with us means the stroller gets caught on every display, we knock things over, and I am annoyed by the third store. Don't moms shop more than anyone else? Don't a lot of us use strollers? Why are displays placed so dang close together anyway?



So while we are maneuvering around obstacles and taking things out of Kara's hands, or getting Meghan out of a dress she wanted to try on (she likes the sparkly ones) we rarely notice other shoppers unless they stop and talk to us.



Wednesday, we did though, because they were openly glaring ( not to be confused with staring) at me and the little girls. Not everyone glared, some plainly stared or gawked, and a few asked if Kara and Amanda were twins. No one asked if I were their grandmother for once, I guess that was good. Julia and I just keep shaking our heads when people scowled at us, what is wrong with people?



I read a lot about Down syndrome in October, I read articles and then I read the comments made to the articles, and wonder why every single negative, rude, or hateful comment gets 68 thumbs up, while nice comments get 4?



The rude looks, the terrible comments, the women justifying abortion because of special needs, the surrogate mom fighting to keep the baby alive in her body because it may have Down syndrome and the parents do not want it born, trying to force her to abort because she signed a contract, and most people agree with the parents in the comment section? All of this tells me that people do not want children like mine alive and walking about them. Eugenics, so ugly, vile, and one of the worst ideas human beings have come up with.



What do I mean? Taken from Wikipedia http://en.wikipedia.org/wiki/Eugenics



Eugenics is the "applied science or the biosocial movement which advocates the use of practices aimed at improving the genetic composition of a population,"



Read more about it, I learned the word after Meghan was born, sure I heard it in sociology, especially when we discussed Hitler and Stalin...but I never had a reason to fear it. Knowing there are extremist advocates of this movement who would gladly kill my children if given the power makes my blood run cold (if I allow myself to think about it, I try not to).


Crazy Kris, come on, no one would kill your children? Is that so, there is a 92% abortion rate for women who have a prenatal diagnosis of Down syndrome, so people are exterminating children with Down syndrome by the hundreds of thousands already. They are fetuses in the 5th month, some a week away from being viable if born early on their own (sure premies have their own sets of issues too). Some were born alive after a failed abortion attempt and placed in back room to die alone. Should I stop now? Do you understand why I get upset when a woman and her children glare at me and mine? If you really delve into our society, you would not like what you see.


I read a blog today that even churches are turning kids with Down syndrome away, a church should be the one place that welcomes them without reservation. Jesus loved everyone EVERYONE, not just the cognitively average-superior, the beautiful, or the able-bodied. "Your children are disrupting our service, we need to ask you to step out". This attitude is one reason why I left church years ago. I thought it was my specific denomination, but apparently this attitude is shared by others.


So you see my girls and I walking towards you in a store do you smile and say hello? Look away as soon as you notice us and not make eye contact, turn around and walk the other way? Or stare openly and scowl? People who read my blog would likely say hello, many have children with Down syndrome too. There are also nice people out there who are very sweet to us, I am not saying everyone is unkind. It is the unkind peoples faces I remember though, they stain my soul with their ugliness.


Because it is Down Syndrome Awareness month, there are articles everywhere featuring exceptional people with Down syndrome; artists, actors, advocates, couples getting married, but there are very few about the realities of what our lives are like as families.



So we write on our blogs in hopes that someone may read what we have to say, that perhaps a glimpse into our lives may help people see how really ordinary we are, just parents like you, raising children, working, paying a mortgage.



The main obstacles we have in our lives come from those who try to block our children from being fully included in school, church, sports, and other activities. People who still prefer the "Out of sight, out of mind" scenario where my children are concerned. I feel sorry for them, their lives are closed off versions of what they could be, while they see me and my youngest children as weird or different, I see those unkind people as incomplete. I was incomplete before Meghan was placed in my arms almost 10 years ago, I never knew it, but looking back, I can plainly see it. I also have a long way to go, and I am all for learning more, life is about growth.

31 for 21 -day 8-Posting in memory of Renee

A picture I took of Renee at the 2008 Down Syndrome Connection picnic

Today the Tucson Down syndrome community and the world lost a beautiful and very sweet little girl. Renee Blanchard passed away this morning due to complications associated with her cystic fibrosis. She was only 10 years old.



Renee was a little gal with lots to say, I was always so excited that she had the verbal ability to express herself, I thought she was amazing! I loved her voice, I loved her sweet spirit, but she was also strong and knew her mind! She was special in every way.



Our hearts are broken for her parents Doug and Georgianna and her brother Ryan, I know their lives will feel empty without Renee. We pray for them as they learn to live without their daughter and sister. I add my tears to theirs as they grieve losing their beloved Renee.

21 for 31 day 7-Happy 18th Birthday Julia

31 for 21-day 6-Arizona Early Intervention Program (AzEIP) Family Cost Participation

Therapy and more therapy, all three girls see three different therapists, we are so lucky to be able to have our ST see all three girls, ditto for our OT and the PT sees both Amanda and Kara. Our medical insurance covers some of the cost, Long term care, a federal program, covers the rest. Without it, I doubt my girls could get the therapy that makes all the difference in the world to them. We could not afford to pay the high fees ourselves, not many people can. We want what is best for them, we are their parents, we love them. We also pay very high insurance premiums and do not understand why the insurance cannot cover more for our girls, but they will not.

Meghan began physical and occupational therapy at age 4 months. Kara and Amanda did not begin formal therapy until they were 3 1/2 years old. Amanda and Kara had to learn most of the skills Meghan did when she was an infant-toddler. Their caregivers rarely took the time with them because in their countries, they truly did not believe the girls had the ability to learn. The chasm between Meghan's abilities at that age and theirs is wide and deep. Kara is filling the gap more quickly than Amanda, but Amanda does have Autism as well, and that gives her a few more challenges.

We had both little girls evaluated by Child Find after they came home. Both girls were given the preschool severe developmental delay "label", compared to Meghan at who age 3, was listed as mild preschool delay on her paperwork. I do not believe any of them are smarter or more capable than the other, each has her own strengths and weaknesses, Kara and Amanda were more delayed due to their life in the orphanage.

I know that therapy helped Meghan, and we instituted her daily therapy "homework" into all of our play as well. Parents are always teaching their children, so truly, it was not much different than parenting kids that did not need the extra help. The main difference ? We had the guidance of therapists, and they had the expertise concerning her delays and showed us how to help her best. In our case, early intervention made a world of difference, we have children to compare Meghan with, two little girls who never received any.

I am sharing this for a very important reason, for those wondering if early intervention makes a difference in a child's development at all. I am addressing the Arizonan legislators, the people who voted to cut the DES budget who oversees DDD programs, who in turn wanted to stop all early intervention in 2009 to cut their own budget. That February there was a vote by Arizona legislators to cut numerous essential services for countless Arizonans, their goal to save the state money on what they considered expendable services. Of particular importance to parents whose kids need the extra help were these cuts:

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

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.

Of course there were many cuts that affected older children as well, and many adults. That was before a public outcry halted their plans. The Arizona legislators and DES found out they could not get away with it, there were marches, protests, emails, phone calls. There was a clear message coming from parents, don't mess with us, we are used to fighting for our kids.

How could they just do away with early intervention? Even they admit that it is essential, important, so what were they thinking? From the azEIP website :

Why is Early Intervention important?

Early Intervention is professionals working in partnership with parents and families of children with special needs, to support their children’s growth, development, and learning. Research tells us that the first three years of a child’s life are critical years for learning. Early care and education have a long-lasting impact on how children develop. During a child’s first three years, it is important to focus on a child’s developmental needs and take advantage of your child’s natural ability to learn.

The state website says this, but the legislators and DES decided this was all horse hockey? Help me out here, how can they deny that early intervention is essential to children who need a little more help? It is simple, they feel children like mine are a drain on state resources, but if their needs can be met by federal dollars without the state needing to spend anything to get those federal dollars, then there may be some help available. If not, too bad?

Read more:

http://www.azcentral.com/news/articles/2009/04/16/20090416dessuit0416-ON.html#ixzz11gr5l8xo

They felt that there were no measurable results, and wondered if it was worth the cost to our bankrupt state. A federal judge ruled against them and halted their plans, but did not stop them, instead of cutting services, they have instituted their brilliant plan of :

Arizona Early Intervention Program (AzEIP) Family Cost Participation

Early intervention was always free in AZ, the attending therapist billed the families medical insurance first and then the state paid the difference. However, most insurance companies would not pay for therapy for children born with Down syndrome, some saying it is a pre-existing condition, as if being a human being is a pre-existing condition, and others stating they only pay for therapy for someone who suffered an injury. Often the state paid the full amount. The costs are listed above, in the millions, not billions of dollars.

With the new health care reforms, I do not believe any insurance company will be allowed to deny coverage for children like mine, which should be good news to the states who are literally bankrupt right now:

http://www.disabilityscoop.com/2010/09/22/rollout-of-health-care/10336/,

The state will now charge families for early intervention therapy on a sliding scale, and truly the only families who will not pay a cent are low income families (those on food stamps-receiving welfare checks). I have friends who are affected greatly by these changes. For instance, for families making around $45,000 a year, each therapy session will cost around $80 (estimate). If you have multiple children receiving therapy like we do, you pay only for the child who gets the most help, the most expensive therapies. That would mean a family whose child gets 3 therapy sessions a week, like mine do, would pay approximately $240 out of pocket a week for therapy, which is a whopping $960 a month. We could not afford it with our already strained budget. I am betting other families cannot either, at least not for long; they could use savings and take out loans I suppose. It is all about saving money, isn't it? That is what we trade the futures of Arizona's disabled children for, saving money!?

My friends who are therapists are losing clients, and income, we already have a therapist shortage here, the results of the first budget cuts. We waited 2 years to get a PT for Kara and Amanda because there are not many left in the public sector and many have moved away.

I understand there is a prevailing attitude that people with cognitive and physical disabilities are a drain on the economy, a feeling that they take more than they give, the squander the good ole TAXPAYER MONEY with their incessant needs, and are otherwise called BURDENS on SOCIETY. (shouting, not me?) Something an old pediatrician said to us about Meghan when she was less than 12 hours old, that she would be a burden on our family, perhaps he meant, on himself or society? So it got me curious, what do they mean, a burden, how? I looked up the word burden and the very first definitions states: Worrying RESPONSIBILITY, a difficult or worrying responsibility. **the burdens of parenthood** Hmm, so a burden is a responsibility? So then, what is the definition of responsibility? “The state, or fact, or position of being accountable to somebody or for something.” It seems to me that being burdened simply means that people who do not want to care or to do anything are FORCED to care and to act. Laws force them to do what is right for their fellow citizens, the fact that we had to pass laws to get our children and loved ones released from institutions is not lost on me.

Americans with Disabilities Act, do you know that politicians are trying to do away with this law? Oh yes, it has been in the news. Why did they law get written? It simply is so unfair to businesses and THOSE people have the nerve to sue those businesses for not having access, or bathrooms they can use, the nerve (yes, being sarcastic here). They lose profit if they pay a contractor to put in an accessible restroom after all, oh, those people in wheelchairs...

I have been reading a lot about disability law lately, some right websites, some left, many in the middle, this one is said to be FAR left, well, according to those who are far right LOL. http://www.raggededgemagazine.com/garrett/scope.htm and the following passage is from their website:

The Americans with Disabilities Act Findings: People with disabilities as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally . . .
. . . have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypical assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society.

The continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous.

Fear , discrimination and prejudice, issues that have driven societies to do terrible things to people they feel do not deserve to live the same entitled life that they do because they view them as inferior, or perhaps they convince themselves of such, to justify their actions. Do you know there used to be laws in some states requiring people report families who tried to keep their children with cognitive delays home? Their neighbors would report the child and lawmakers would come and forcefully remove the child from their home, putting them in mental institutions. The parents had no say, often being forced to sign over guardianship of their child. There are thousands of stories you can find about this, it happened up to the 1970's, not that long ago really.

Those of us who have children with Down syndrome do not see them as a burden (most of us, I know some do, and often give them up for adoption), they are simply our children and we will protect, support, love and guide them just as we would our other children. To think that someone would come and take my daughters away from us wrenches my gut, can you imagine how you would feel? How they would feel?

However a person feels about this issue, there are federal and state laws protecting all people with disabilities now, but somehow many states, not just AZ, are bypassing some of them, particularly where medical and educational help is concerned. I am sure many high paid lawyers are helping them figure out how, finding loopholes in the law. Thankfully institutions no longer exist as they did up to the 70's, most were torn down after it was discovered that residents lived in deplorable conditions. Out of sight, out of mind, right?

It will be curious to see what happens in the ensuing months as more and more families are forced to drop therapy for their children due to the cost. I feel like we are taking giant steps backwards in disability rights, it worries me a bit, change happens so slowly sometimes, you miss the clues that something serious is happening, is this a trend? It is unacceptable to me that this has happened here, but then a lot of what AZ government has done lately is shocking to me.

What about the children in all of this? Will it change their futures, will they accomplish all they could have if they had proper help, or will they truly be that burden everyone complains about? If they are, who is to blame?

31 for21- day 5-too many cats

Thor, Queenie, Hobbs, and Nightmare, Queenie and Hobbs found a home months ago. Nightmare and Thor did not, no one wants black cats. They are always the cats we love the best too.

My girls, all 4 of them, love cats, and this spring-summer we had a population explosion (no I will not tell you how many). My poor husband and sons are allergic to them, so we keep them outside as much as we can. The kittens sleep in the bathroom at night, complete with litter box, water, and a soft bed to sleep in. Two kittens are sleeping there now.

We have found homes and new places for most of our cats, from foster care, to a feed store that sells them, to real homes. We decided to keep the cats the girls liked the most. In the last two week two of our favorite cats have disappeared, one was very tiny with obvious cognitive issues and the other was physically disabled. Squirt never came home, Thor has been gone a day. He never strayed from home and since he is a black cat and it is October, well, I do not feel odds are in our favor that he will come home alive.

I called Animal Control, Humane Society, and looked on lost and found lists, nothing. I will check tomorrow and call veterinarians.

Meghan has been asking about them all day today, mommy has shed some tears. All of our other cats are quiet and seem sad today, I think they know what happened to Thor...they already seemed upset that we gave two kittens away on Sunday.

All of us feel badly about Thor Buddy, the name mommy called him. So no posts about my littlest girls tonight, mommy is just too sad to think of anything to write.