Protecting The Disabled Children and Adults

It's surreal knowing the conditions disabled Children and adults live in Eastern Europe. In some places conditions are improving but not fast enough. These aren't third world countries I'm talking about. These are old communities that are full of culture and history. After years of the NAZI regime and Soviet rule, poverty became very common.

The EE institutions are overcrowded because more parents are giving up their disabled children at birth.

Poverty and lack of resources available causes more and more disabled children to be abandoned at birth . The children are hidden away in Groupas, Orphanages and Institutions. Hidden away from society. Unless the children are adopted all of the kids will live and die in the institution.

The neglect and murder of the disabled began during the NAZI occupation. The regime considered the disabled as "useless feeders". If they couldn't work to support the regime they were put to death by lethal injection, starvation, gassing or exhaust fumes.

Approximately 200,000 to 250,000 disabled people were murdered during the Action T4 program. This initial start of Ethnic Cleansing of people the NAZI regime considered "defective" began September 1939. Often false causes of death were given to the family members to hide what actually occured.

I'm glad that period in history  is over and hope the next generations remember what evil can do. It's a shame the treatment of the disabled is still cruel in some places.

The purpose of this particular blog entry is not to slam a country, groupa, institution or region. Because each country's policies and regions treat the disabled differently.

I've seen the documentaries "The Hidden Children Of Ukraine " and the video of a Serbian institution that was shown on the news.

I've read the adoption blogs of children being adopted that had the cardiac issues and the adopting parents think the situation is dire. Quite a few times when the AP get the official referral the parents are finding out the cardiac repair was done long ago. Once the child is home in the United States and seen by the cardiology Drs , the parents  find out the operation was successful. Unfortunately some of the parents are told of the repaired heart defects to later find out the defect is still there.

Each region is different and whatever treatment the disabled child has received can vary from institution to institution. And until you get the official referral for a particular child, the medical information your given  by an outside source is often incomplete or incorrect.

I'm American and I'm saddened to say it's not just Eastern Europe that the Disabled were mistreated . It happened in the United States also. In 1965 Senator Robert Kennedy toured Staten Island's Willowbrook State School, he called it a " snake pit". And stated , " living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than cages we put animals in at the zoo." He made suggestions on how to improve the living conditions for the disabled children. Willowbrook State School had a reputation of being a warehouse for children with intellectual disabilities.

*In early 1972, Geraldo Rivera, then an investigative reporter for WABC-TV in New York, conducted a series of investigations at Willowbrook uncovering a host of deplorable conditions, including overcrowding, inadequate sanitary facilities, and physical and sexual abuse of residents by members of the school's staff. A class action lawsuit was filed on behalf of the child living inside Willowbrook and The publicity generated by the case was a major contributing factor to the passage of a federal law, the Civil Rights of Institutionalized Persons Act of 1980. (paragraph taken directly from Wikipedia)*

Geraldo Rivera's investigative reform and the public's outrage was the beginning of real reform.  The sad reality is places like Willowbrook existed all over the United States but like EE facilities varied from state to state on how the children and adults with Intellectual disabilities were treated. If this particular blog entry seems unbelievable or far fetched, look up Willowbrook and investigate the information yourself.

Because of genetic testing and ultrasounds parents in the United States are less likely to abandon their disabled children now but the abortion rate is staggering.

*A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United Kingdom and Europe with a diagnosis of Down syndrome were terminated. Data from the National Down Syndrome Cytogenetic Register in the United Kingdom indicates that from 1989 to 2006 the proportion of women choosing to terminate a pregnancy following prenatal diagnosis of Down syndrome has remained constant at around 92%.

In the United States a number of studies have examined the abortion rate of fetuses with Down syndrome. Three studies estimated the termination rates at 95%, 98%, and 87% respectively.  * (information source Wikipedia)

Looking at the abortion rates every country has a long way to go.

Adoption Criticism and why I care

Months before I read the first adoption blog I used to follow a couple children with Trisomy 18. Part of me was intrigued and knowing how the medical community treats those born with chromosome abnormalities angered me. Some surgeries that CAN fix some of the issues are often denied and IF the parents did not fight so hard the child would die. Regardless if the child is born with 46 chromosomes or 47 he/she is someone's child. It angers me the parents are made to feel that their child would be a burden if the child has a chromosome issue or birth defect. If the parents are aware of possible issues and choose to continue a pregnancy their child won't be a burden.

Yes the parent might get overwhelmed at times and have to continuously fight with the medical community for needed treatments, equipment and services but it's for their child's well being. It's frustrating that some diagnosis and children are denied life.

And then I learned about international adoption. I read the first adoption and heard about some of the appalling conditions in EE Orphanages and Institutions for those born with chromosome abnormalities, Cerebral Palsy, Cystic Fibrosis and another other diagnosis the child is declared "imperfect". These children are locked away from society and forgotten about.

If it wasn't for outsiders (foreigners) adopting and raising awareness, hundreds if not thousands of innocent children would die alone in the only environment they've ever known. The child's potential never known, locked away in a world most of us will never see. Without a family to call their own or someone who love them. A very world that existed once in our country less than 40 years ago.Thank goodness American children with disabilities are no longer hidden away.

I can't imagine the hopeless feeling of walking away because there is no resources available to care for a disabled child.

Adoption is a good thing but I started noticing things in regards to an adoption ministry. When a family starts the process they have support and guidance from others. Once the adoption is complete the support system disappears or falls away.

I've noticed because of photolisting a childs actual diagnosis can be misleading or very incomplete. And I've noticed those adopting without using the ministry's in country contacts are paying less in "official" fees. Sometimes it's 10k less. And I've found blogs that the facilitator acted like a thug towards the family.

If the family questions the Adoption Ministry, the adoption process stalls. As long as the families remained obedient and silent there was no delays.

Most of the EE countries frown on photolisting on 2nd and 3rd party websites as Preselection of children is forbidden. And until the official referral is given  and adoption completed that child is not your child.

I have respect who go outside their comfort zone to give a disabled child a home.  Like a parent who continues a pregnancy even when there is abnormalities, the child is very much wanted. But as long as the child is safe and in a home  , that's what matters in the end regardless of how it happened.

Another reason I care is because of my friend's biological daughter Jessica. Had she been born in an EE her life might of been spent in an institution. My friends pregnancy was normal and uneventful, she was young and expecting her first child. During a very long labor the Medical staff failed to notice when J's heart almost stopped. By time they intervened J was severely brain damaged because the cord was wrapped around her neck and left my friend unable to have another child. My friend was 24. Jessica spent the first 4 months of her life in a NICU. My friend fought for her severely disabled child and never excluded her from anything. She never allowed educators to put her in a corner and exclude her either. She fought for her child and continues to fight, Jessica will be 29 soon.

I care ....because I just do.

Don't text and Drive and Cell Phone Use Etiquette

I'm the first to admit the importance of cell phones. Other than when it's being charged and I'm taking a shower, in the bathroom etc I'm never more than a few feet from my phone. But there is many instances when cell phone usage can be considered rude, disrespectful or dangerous.

During Class a cell phone should be off or on vibrate and put away off the desk. You can always check for missed calls or messages between classes or on breaks. Some schools forbid cell phones during school hours.

At Church-  Your phone should be on silent or vibrate. Your there to worship God not to check your email, Facebook, Twitter or Text.

At Work- The phone should be off or on vibrate. In your pocket or purse.  Some employers frown on phone usage during company time unless it's business related.

At theatres.

Funeral Homes it's rude and disrespectful to text, surf the internet or receive calls during a viewing or funeral. Turn the phone off. In December 2011 someone was checking text within 10 feet of my Stepmother's body. I calmly asked them to turn the phone off. I stated it was disrespectful to my Stepmother and to the family.

Driving- Talking or texting on the Phone impairs your driving. You become less aware of your own driving and those around you. If you cause an accident while texting in some states you can be charged with a crime. Deleting text messages you sent or received during the accident does not declare your innocence. Each text message is time stamped when its sent/ received on your billing record. If the accident results in a fatality this record can be obtained with a court order.

I worked for a major telecommunication company after college and there is a record of usage on each device. Every call made or received is timestamped. Every text sent or received is timestamped. We could not see the content of the text but could tell you when a text was sent or received and from / to which number.

Parents if your child is a new driver or suspect your child is using the phone while operating a motor vehicle talk to them about the importance of pulling over to make or receive calls. Talk to them about driver safety before it's too late. In order to instill this lesson its important as a parent to not use the Phone yourself when operating a motor vehicle.

No call is that important that you risk others safety to answer it. Pull over in a safe place to return the call or text.

And remember most parents would rather their child be a few minutes late because they pulled over to make a call then not make it home at all.

The Human Aspect of International Adoption

Photolisting orphans is like a double edge sword . In order to raise awareness and encourage adoption some individuals feel photographs are important.  But posting pictures of children can also be considered exploitation especially when the child's country forbids the practice. Most EE countries do not allow preselection of children or photolisting on 2nd or 3rd party sites.

I have  great respect who decide to adopt without seeing the child first. The family has the homestudy and months of paperwork before getting the referral or seeing the first photograph. In other words the family doesn't fall in love with a picture and then start the adoption process.

The families who follow the rules also don't share personal information about the child until the adoption process is completed. They don't publicly share information about other children either.

Because of positive behavior of the parents and respect of the policies , future adoptions can and will happen for other families in this particular country.

Educating Myself on Heroics

What is a true hero?

To me a hero does the right thing because it's the right thing to do. Sometimes the person acts quietly without drawing attention to themselves with no accolades or public recognition. They care about their families, neighbors and community. They quietly donate to causes or individuals who need help. The volunteer their time and energy to help someone. 

I've learned a true hero is an ordinary person just doing the right thing, nothing extraordinary. There has been many heroes since time began but during WW2 there was a lot of heroes.

Irena Sendler helped save 2500 children by smuggling them out of the Warsaw ghetto and placing them with Polish families. She kept a record of each child rescued in hopes of reuniting the child with their families after the war. Sadly most of the parents were sent to Treblinka. She  faced death each day but she put her own mortality last to do the right thing by saving innocent children. Her heroism went unnoticed except by those she helped save. Any recognition during WW2 meant certain death for her and those helping by the NAZIS. She was eventually caught and tortured. She was sentenced to death but allowed to escape because Zegota bribed a NAZI . In 1965 she was awarded Righteous Among the Nation's by Yad Yashem.

We never learned of her heroics in our history books. Most of us would of never known of her heroics during the Holocaust,if some high school weren't researching the holocaust  in 1999. They wrote a play " Life in a Jar" about Sendler's activities during WW2.  The students from KS visited Irena in Poland who was living quietly in a nursing home. Irena and the others didn't risk their lives for recognition, awards or accolades. They did it to save friends and strangers from injustice. Irena never considered her actions as heroic.

There is still heroes among us that we see everyday that quietly live their lives without making the front page.  They just choose to do the right thing .

What I've learned

I've learned a lot reading blogs of different content. I've learned about goals, hopes and dreams. I've learned to appreciate each day and live it to the fullest. I've learned about the heartbreak of an unexpected diagnosis and those willing to travel that road regardless of the destination or outcome.

My niece was offered a chance to end her journey when the Dr suspected the twins had Down Syndrome. The pregnancy had been high risk from the beginning. From 8 weeks to delivery she was on bedrest. Not an easy thing considering she had two other children ages 2 and 1.

She switched Drs and continued the pregnancy. She also refused further diagnostic testing other than ultrasounds. She was willing to take the unplanned trip to Holland. Incidentally her plane was rerouted back to Italy. My great nieces were 8 weeks early but otherwise healthy. Neither one has Down Syndrome and any earlier delay was caused by being premature.

So many women would of cancelled the vacation. Or planned the trip later on, hoping to make it to Italy. A few will decide to go to Holland without a guidebook or day to day itinerary regardless of the ultimate destination. The parents still hope after the diagnosis but the hopes become more relevant and realistic.

I've noticed even though most of the families believe in God they become more spiritual during the unexpected journey. Their faith deepens. No matter how alone they feel they know God is with them and walking this journey with them.

Some go into this new journey to Holland knowing the trip may be cancelled at any time . But each day of the journey is celebrated.

I've learned about strength, hope and joy. And still so much to learn.

Life's Little Wonders

Working in long term care I've had the privilege of taking care of alot of people. The elderly and disabled are societies most vulnerable citizens besides children as they can be abused or neglected. Down Syndrome has interested me since caring for older adults who were locked up most of their lives because of a disability like Down Syndrome. The fact is 30-40 years ago it was almost unheard of to keep children with Down Syndrome. Sure some families did but most went to state run institutions or special needs group homes. And although we easily condemn EE countries for hiding away the disabled and the living conditions of the facilities, until reform our facilities weren't that great.

In 1972 a young attorney and reporter by the name of Geraldo Rivera investigated the Staten Island Willowbrook State School for abuse and neglect of mentally retarded people. He won the Peabody Award for this investigation but more important than that it prompted reform on the state and national level.

And yes he's the same Geraldo from television. Early in his career he did serious reporting. The residents of Willowbrook
Lived in deplorable conditions , was subjected to abuse (sexual and physical) by the school's staff.  Some of the residents was subjected to medical experimentation. Geraldo Rivera's Investigation report was a contributing factor in the passage of the Civil Rights of Institutionalized Person's Act of 1980.  The expose was titled Willowbrook: the last disgrace.

Public outcry prompted the closure of Willowbrook in 1987.

We now know some children with disabilities CAN learn, walk, talk and work. They will do things at their own pace, reaching milestones later than a typical child. Rarely is a disabled child locked away from the rest of society , in an institution in the US.

Thank Goodness for little Wonders.

Duggar Nation, Large Family and Intellectual Disabilities

Years before the development of ultrasounds women were discouraged having children passed the age of 32 because of having a child with an intellectual disability such as down syndrome. Women would most likely carry to term without knowing the diagnosis or even the baby's gender. And until the actual delivery everything was unknown .

The knowledge of the gender happened at birth along with diagnosing genetic issues. There was no pre-planning. Or abortion due to a genetic or intellectual disabilities or conditions deemed "Incompatible With Life. A pregnant woman went into labor without knowing if anything was wrong. Once the child was born the Dr and nurses encouraged the parents to give up the child if the child was disabled. The mother was discouraged from even seeing the child if physical anomalies was present.  More often than not the mother left the hospital without the child. If the child lived he/she tucked away in an institution for however long he/she lived. Thank Goodness this isn't the case anymore in the United States. But at the same time the abortion rate is 90% for women carrying Down Syndrome. 90% of Down Syndrome babies is murdered before they take their first breath. Before they can show their parents or the world what they can do they are scraped out of their mother's womb and disposed of.

Ironically the down syndrome blogs I follow the mothers were in their 20's when their child was born. Twenties is not 32. As a matter of fact Michelle Duggar has given birth 10 times since her 32nd birthday. Her 10th child died during gestation and her 9th after 32nd Birthday (19th) child was born premature but is fine now. Josie's birth and struggle to live was documented for the world to see on TLC (19 Kids and Counting) . Another Family known for a large family also has 19 kids, half of the Bates children were born after Mrs. Bates was 32. As far as I know none of these 38 children have genetic issues or intellectual disability.

During fertilization and early fetal development a genetic hiccup occurs. In the case of Down Syndrome or Trisomy 21 there is 3 copies of the 21st Chromosome. With Edwards Syndrome or Trisomy 18, there is 3 copies of chromosome 18. And Trisomy 13 or Pateau there is 3 copies of chromosome 13. Trisomy 13, 18 and 21 are often seen in the ultrasounds or during genetic testing. The degree of disability varies from child to child. Even typical children learn differently and at different rates. Early intervention is important for kids regardless of learning or intellectual difficulties to give them the best chance.

Trisomy 13 and 18 are considered incompatible with life , life saving surgery and medical intervention is often denied. Sometimes the un-repaired heart defect ends their lives.

Kids with disabilities should be allowed to live, learn and love. 

Adoption and Name Change

Maya Angelou, the author of "I Know Why The Caged Bird Sings" , discussed identity in the book. As a young adult Maya's employer purposely called her Mary, instead of using Maya's given name which is Marguerite.

Billie Letts had discussion questions in the back of her book, Where The Heart Is, explaining how people with authority would often times call the uneducated or poor by different names. It is a way to strip the identity away from someone as a show of power.

Hitler and the Third Reich, stripped millions of their name as a way to dehumanize. Often the victims of the Reich were referred to as a number or a derogatory name.

Prisoners in the United States are assigned a number upon admission into prison. During cell checks, work assignments and head count the prisoner is referred to as that number.

The reason why I'm bringing this up is I'm currently watching "La Bamba" , about the singer Ritchie Valens. His birth name was Richard Valenzuela. His manager changed his name so it sounded less Hispanic, Valenzuela was Mexican- American, but if you only heard him on the radio without seeing him, you would never know that. Tina Turner was another entertainer stripped of her name. Her birth name is Anna Mae Bullock, Ike changed her name. Anna and Richie's names were changed without their consent or because of the suggestions of others.

A lot of entertainers change their names but the whole point of this blog entry is about adoption and name change. I applaud the adopting families that keep the child's birth name. Or keep part of the name without completely stripping the child of their identity. Some adopting families keep the child's birth name but changes the spelling making it more American. For instance Anastasia might become Anna. Or Natalia might become Natalie etc...

Some families who adopted older children allowed the child to choose a new name or keep the name. Many kept the name they've had since birth. Very few teenagers chose a new first and middle name.

There's many adopting families that assume since the child is getting a whole new life it's okay to give the child a whole new name. Can you imagine living in an institution or orphanage all your life to have strangers come in and turn your world upside down? Sure the child's life is improving for the better because of adoption but at the same time It's traumatic.  The child is being ripped out of the only home they've ever known. It might be the biggest shithole in the world but it's home. They are taken away from familiar faces and routine,  there's comfort in the familiar. There's safety in the familiar. The child's name is their only possession in the orphanage, Groupa or institution. Even the clothing and shoes they wear does not belong to them. The toys they play with don't belong to them.

If a special needs child is below the age of 2 the name change might not be as traumatic as it would be a 5 year old. Can you imagine being 5 & your called Alexei everyday but suddenly strangers start calling you Steven? Besides being taken away from the familiar the child is expected to respond to a new name.  This would even be traumatic for any child whether if they had a special need or not.

This was just another random thought about adoption.

** The names I used as an example does not refer to any particular child, family or adoption.**

Sexual Abuse of Disabled People

Estimates show that 90% of females and 50% of males with intellectual disabilities will be sexually abused.

1. Start early. Introduce correct terms for body parts. This way a they can report clearly if someone engages in sexual misbehavior.

2. Introduce body privacy. NO ONE is allowed to tickle or play around with the private parts of your body. To counter any attempts at or*l s*x include the mouth as a private body part. NO ONE is allowed to put anything part of their body into your mouth.

3. Make it clear that if someone breaks the rules about body privacy, YOU (the parent) need to know about it.

4. Teach your child to stand back and hold out their arms and say – in a BIG LOUD – voice and say, “NO! STOP THAT!” “IT’S NOT ALLOWED!” Practice saying NO! assertively.

5. Practice distinguishing secrets to keep and secrets that must be told. Children and adults with intellectual disabilities often think they can tell good secrets but have to keep bad secrets cause telling a bad secret might make someone feel bad.

6. As sex abuse is about power, work to empower your child with independence in dressing and toileting.

7. Develop and practice problem solving skills. Role play different situations and how your child should react in them.

8. Bear in mind that if your child lacks physical affection, approval and attention, they become more vulnerable to predators.

9. Develop social skills. Personal space. Eye to eye contact. Make sure your child knows their phone number and address.

10. Often children with special have already developed a passivity to adults, especially to caregivers and other professionals. Teach your child it is okay to stand up for themselves.

11. With non-verbal children consult a speech therapist for communication symbols for sexuality.

I found this on another blog and decided to share because this information needs shared and taught to protect the disabled , to give them a voice. These statistics leaves me speechless and angers me.

I think this was authored by Tammy at Praying for Parker?

I'm so Lucky but I still struggle

Each day when I wake up I realize how fortunate I am. Sure I'm learning to live with diabetes and some days I do struggle with being diabetic. I'm stubborn and get so frustrated when things don't go my way. In a way I am thankful that I was diagnosed with Type 2 diabetes. Yes I know that sounds strange but it's true.

What if I continued my bad food choices, while ignoring the obvious signs of diabetes? Realistically I'm a perfect diabetic for amputation because I have decreased sensation in my feet from a lumbar injury. I've cut the bottom of my left foot multiple times without feeling it. I'm more cautious now with my feet because of the Type 2 diagnosis.

Because of diabetes I've dealt with hyperglycemia and had to think about what I was putting in my body. As a result I'm losing weight, even though I'm wasn't obese in the first place. I'm losing weight and hopefully it will lessen the severe pain in my back.

Even when I do get my glucose under control I will still be a diabetic.Even if most of the pain was gone I would still be disabled. The Smart Ass Cripple ( an awesome blogger) calls me and others like me Verts. A vert is a disabled person still able to walk. It's hard to believe It's been 11 years since my operation and having to relearn to walk or stand without help.

It's sad knowing how most us us take the little things for granted such as walking. And until you lose the ability to even do the simplest or menial task , you might never appreciate what YOU CAN do. Yesterday I walked 2 miles and although that isn't a big accomplishment, I still Rejoice.

11 years ago I couldn't shower, dress (lower extremities), get out of bed or even take myself to the bathroom. 11 years ago I almost didn't wake up from anesthesia. Again I was lucky that the operation was successful without deadly results or permanent damage. My back injury, rehabilitation, reaction to anesthesia and operation deserve it's own entry, which I will do soon.

This post is about the struggles in life, and we all struggle at some point . Some people struggle with money, health issues, family and relationships. Others might struggle with uncertainty or the unknown. All we can do is keep trying and move forward. Life is too short to dwell on the past. Make each day count.