Loving My Christmas Girl Born Disabled by Congenital CMV

Expecting our second child, due to arrive Christmas Eve of 1989, had been a delightful experience. What a Christmas present! But the moment Elizabeth was born on December 18. I felt a stab of fear. My immediate thought was, “Her head looks so small–so deformed.” Before she was twelve hours old, I found out why.

When the neonatologist entered my room the following morning, he said, “Your daughter has profound microcephaly–her brain is extremely damaged throughout. If she lives, she will never roll over, sit up, or feed herself.”

He concluded that Elizabeth’s birth defects were caused by congenital cytomegalovirus (CMV) – a virus that may have no symptoms for the mother, known as a “silent virus,” or it may present itself with mild to severe flu-like symptoms.

The Centers for Disease Control and Prevention (CDC) states that approximately 8,000 babies a year are born with or develop permanent disabilities because of congenital CMV. It is the #1 viral cause of birth defects–more common than Down syndrome.

How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it because it is frequently being shed in their saliva and urine. Pregnant women need to avoid kissing them on the mouth and sharing towels and utensils with them. Hands should be washed thoroughly, especially after wiping runny noses, diaper changes and picking up toys that have been in a toddler’s mouth.

While I was pregnant with Elizabeth, I not only had a toddler of my own, Jackie, but also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may experience a gradual hearing loss, suffer some visual impairment or struggle with slight learning disabilities. But Elizabeth’s case was not a mild one.

“My life is over,” I thought. I asked God to heal her instantly, but since He didn’t, I begged him to kill me and prayed to be crushed to death in an earthquake or struck by lightning. I just couldn’t handle raising such an afflicted child, period. Although children are supposed to be a blessing, I felt far from blessed–I felt stricken.

Thankfully my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she has been born into.” He was just like Charlie Brown with that pathetic Christmas tree.

“Oh God,” I prayed, “please help me love Elizabeth too.”

Initially, whenever I looked upon Elizabeth, my heart broke afresh. I couldn’t see past her prognosis. The prognosis became more of a person than Elizabeth herself–it was a living creature relentlessly torturing me.

If I was ever to move forward and find happiness again, I knew I had to stop dwelling on the unanswerable questions that kept popping into my head like, “What will she be like in the future?”; “Why didn’t my OB/GYN warn me about this?” and “Why would God let me catch CMV?”

In those days after Elizabeth’s birth, all I could do was rock her and read the book of Psalms. Before Elizabeth was born, I really couldn’t relate to the Psalmists. I thought, “Wow, those people are really depressed!” Now, I found comfort in their bitter questions, such as, “How long must I bear pain in my soul, and have sorrow all the day?” Knowing I wasn’t the only one despairing of life made me feel less alone.

It took Elizabeth a couple of months to finally figure out where my face was, but then one day she looked directly into my eyes and smiled-we had finally connected! I gradually began to think, “If she doesn’t care that she’s severely mentally retarded, and, apart from a miracle, will never walk or talk, why should I be so upset?” Maybe it was the sedative Valium talking, but that thought stuck with me, even when I no longer needed “mother’s little helpers” to get me out of bed and into the shower.

Eventually, I no longer focused on Elizabeth’s disabilities, but on her abilities-her appreciation for being alive for one. Although she could not hold up her head or move her tightly clenched fists to reach a toy, she could hear and see-at least a little. She could not sit up by herself much less crawl, but she could sit for hours snuggled contentedly in my lap and study my face with her large blue eyes framed by long dark eyelashes. When I smiled at her, she’d break into an ear-to-ear grin in return, letting me know that my happiness with her was all she needed to be satisfied in this world.

It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth’s condition. Life did become good again. We were eventually able to move ahead as a happy, “normal” family. Even strangers played a part in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair through the muck of an upstate New York county fair, I felt myself sinking into a depression because children were staring at my little girl who could not even hold up her head. “She looks funny,” kids said loudly to their embarrassed parents. In the midst of my dark thoughts, a heavily tattooed carnival man, who looked like he had been drinking for years, ran from behind his game booth and came right up to me. My alarm melted into tears of gratitude when he handed me a large, brown teddy bear from his stash of prizes and said, “I want your daughter to have this.”

One long-term nagging problem, however, began the day my older daughter, Jackie, asked, “Can I have a dog?”

I cringed. The dreaded day was here-all kids inevitably ask for one. And why wouldn’t they? Movie dogs like Lassie drag you from burning buildings and keep you warm when you’re lost in a blizzard. But by the time we’re adults, we’ve learned the truth about them: they urinate on your new wall-to-wall carpets, dig holes in your leather recliners to hide their rawhide bones, and bite your neighbor’s kid.

“No, you can’t have a dog,” I said, bracing myself for the age-old argument. “We just can’t risk a dog around your sister.” I hated admitting that. I didn’t want her to blame Elizabeth for being so fragile. But taking care of Elizabeth was already enough work without adding a dog that might playfully nip at her.

I know! I’ll give Jackie the “lip-severing story.” That’ll convince her we can’t have a dog around her sister.

“When I was 13,” I began, “I talked Grandma and Grandpa into letting me have a Weimaraner. His name was Bogie-short for Humphrey Bogart-and he was a nipper. One day, my two-year-old cousin Suzannah was playing on the floor underneath the table with a Popsicle stick in her mouth. Bogie snapped at the stick and bit her lip off! My grandmother got the lip off the carpet and wrapped it in a paper napkin to take to the hospital. But it couldn’t be sewn back on. A surgeon fixed Suzannah’s face, but when we got home, my mother loaded Bogie into the back seat of the car and took him to the vet’s. I never saw him again. He took the ‘long walk’ as they say in the Lady and the Tramp movie.”

I paused so Jackie could let the horror of the incident sink in.

But all she wanted to know was, “Where’s Suzannah’s lip now?”

“Gosh, I don’t know! The last time I saw her lip it was stuck to the napkin, all shriveled and mummy-like on my grandmother’s bookshelf. But that’s beside the point; can’t you see how dangerous a dog could be for your sister? She can’t speak-how would she call out to us if she was in another room and the dog was bothering her?”

If there were a Lassie-like dog out there, Elizabeth more than anybody could use one, but I just couldn’t take that kind of a chance on an animal that could live up to 13 years.

After many tears and arguments, I finally made Jackie a promise: “If God brings one to our door, then you can have it. How’s that?”

“Really?” she asked, a smile spreading across her face.

“If one shows up at our door, I’ll assume it is a sign from God that it’s a special dog who will be gentle around Elizabeth.”

“Mom, I love you!” She threw her arms around my neck and kissed my cheek.

I felt bad-all I had really given her was a bit of hope. Jackie actually thought a dog would show up.

Perhaps there was a compromise to a dog? There must be a pet out there that wouldn’t hurt Elizabeth. A goldfish? I mean other than a freak accident, like it flipping out of its bowl and hitting Elizabeth in the face, the thing couldn’t possibly hurt her. A hamster? They are entertaining-running around and around in a hamster wheel with no clue they aren’t going anywhere. Maybe Elizabeth could enjoy a hamster too. She was incapable of holding it, but she might find it amusing to watch it run in its wheel.

Perhaps a spinning hamster would make Jackie forget about a dog-the way my parents thought getting me Bogie would help me forget about boys…

Of course what happens next is a whole other story!

Lisa Saunders

Applying Maslows Heiarchy of Needs in the Service of Intellectual and Developmentaly Disabled Adults

Maslow’s hierarchy of needs theory consists of five interdependent levels that one strives to meet in a life cycle. Some cultures may place more or less emphasis on the importance of each level, but each has great applicability to achieving a meaningful life for all people. The hierarchy is depicted as a pyramid in which each level builds upon the previous. In the realm of intellectual and developmental services, the hierarchy is an excellent resource in determining unmet needs and motivation of some problematic behaviors.

Basic Needs

The first level or base of the pyramid is basic human needs. Requirements in this level consist of food water shelter, clothing and sexual gratification. If one is unable to meet the need in this level behaviors will be geared toward meeting those needs. For example, if one has suffered of starvation one may attempt to steal food. Hence, the behavior is communicating an unmet need whether real or perceived.

Safety Needs

Safety and security come from consistency and predictability. Service providers often believe they provide this for people they support. It is important to understand that safety and security come from within and is a feeling. An environment can be set up to be safe and secure by service providers, but the feeling of safety and security only comes when trust is earned. Because of past traumatic experiences and high turnover rates in the human service field, trust becomes even more difficult to attain.

Relationships

Relationships with various people in one’s community is a common goal in serving people with intellectual and developmental disabilities. Much effort is exhausted to help integrate people in their community and form healthy relationships. This is also a task that is a struggle to achieve in most cases. According to the hierarchy of needs, one will have difficulty achieving a higher level need without first achieving the previous. One element that must be present to build these relationships is trust. Without feeling, safe and secure a person will not be able to build positive, healthy relationships.

Achievement

Achievement can be many different things for a person with intellectual and developmental disabilities as with all people. Achievement could be as simple as learning to sign one’s name, or it could be completing an educational milestone. If one has not built positive, healthy relationships, it is much less likely that a person will not complete their goals. Like all people, when task becomes hard and seem impossible, people tend to give up and stop working toward their goals. With positive relationships, people receive inspiration and encouragement from those closest to them to carry on a stay the course.

Self-Actualization

Self-actualization is the top of the pyramid is most often achieved later in life. Simply put, self-actualization means that all lower level needs have been realized. Usually, accomplishment leaves a personal with the feeling of a legacy, or that they will be remembered for the contributions and relationships forged during their life.

The benefit of applying the hierarchy of needs in service provision is that it allows providers of service identify areas to direct focus on. If one is having difficulty in building positive health relationships, the focus should be directed at safety and security needs first. Once a person feels safe relationships will come more naturally and with less effort on the part of the service provider.

Ways To Promote Independence in Developmentally Disabled

Our society as a whole can only function well when all its sections are working well. Americans with disabilities are an equal part of this society. The society can treat them as a burden and choose to ignore, as it has been conveniently doing since long. However, the best way to deal with the problem is to accept it. Community integration of developmentally disabled adults and kids is the right way to solve the problem. Treating people with intellectual disability with respect and as equals is the way. If they are given the right training, exposure, and opportunities, they can become a contributing member of the society. They are only a bit slow and they have had no control over it. All that is required is the inclusion of people with mental disabilities.

Jobs for disabled are disproportionate. It is no secret that the share of the developmentally disabled adults in jobs is very low. As per the statistics released by the U.S. Bureau of Labor Statistics, only 17.9% people with disabilities were employed in 2016. The employment ration of people without disabilities is well above 76%. This shows that community integration has been lacking. The sense of empathy and companionship may have been lingering deep in our hearts it has been absent in the society.

It is important that we all take steps to increase their participation in society as a whole. Making them feel as a contributing member is very important. Some ways to promote their independence and increase their participation are:

Give Work

Work is always emancipating. It breaks barriers and brings people into the mainstream. Developmentally disabled adults mainly remain cut-off from society because they do not get to work in it. It is important that we give them work. Right to work with everyone will give them a sense of belonging. They will be able to integrate into the society better. Developmental disabilities services are limited and their scope needs to be widened.

Sports Opportunities

Sports is a great way to break inhibitions and make people comfortable and loved. It can be a great medium for promoting community integration in people with mental disabilities. It makes people more inclined towards taking initiative. It can become a starting point for gaining independence.

Respect and Interaction

One of the biggest reasons for people with intellectual disabilities not being independent is lack of trust. Our interaction with them is so low that we are never able to develop respect for their abilities. People with mental disabilities are generally fit for physical work. They are employable in several types of jobs. It is our lack of knowledge and trust that keeps them aloof. By increasing interaction with them, a trust-building exercise can be started. Their community integration through work will propel their quest for independence. Supported housing is also a great way to increase their interaction with everyone. They will get higher exposure and live with everyone without inhibitions.

Increase Representation

The less we know, the lesser we bother. Developmentally disabled adults have a very low representation in society. This has created a vacuum. A feel-good factor where we have closed our eyes to a reality. This can be changed by increasing their representation in the society. Allowing more people to work, live and play besides everyone is the best way to cater to it.

Increase Awareness by Teaching

Lack of ample knowledge about intellectual disabilities and the problems people with them face is a big reason for concern. This ignorance becomes the root cause of apathy. For greater inclusion, it is important that we teach people about them. The problems, their causes and the limitations they cause. This will help people in understanding people with mental disabilities. Their sympathetic and cooperating attitude to creating a safer environment. Developmentally disabled people will be able to move around more safely without being stared or google.

Americans with disabilities are as important part of the nation as everyone else. They can and should contribute their part in the development of nation but for that, they need to get a chance. This chance has to be given to them by making them independent. Community integration is a great step,to begin with. Supported housing is one initiative that has started bringing them into the mainstream and more such steps need to be taken.

The Renaissance: Understanding the Developmentally Disabled

Between the 14th and the 17th centuries, the Renaissance, a period that symbolized rebirth and renewal, saw a significant change in people’s perspective towards the developmentally and intellectually disabled. The ill-treatment and disregard towards such individuals by no means ended completely. The disabled were still subjected to forms of abuse, mockery and mental harassment. However, the world was slowly but surely beginning to understand and empathize with the conditions of the developmentally disabled.

The first settlers in American Colonies would prohibit disabled individuals from entering the country, afraid that they would require financial support and would be unable to care for themselves. Even as American colonies shunned the disabled, they could not avoid having disabled babies being born in the colonies. Children who had already settled the colonies would at times to display some form of developmental disability. Ultimately a law was passed that allowed families to provide care and treatment for the disabled within their houses. While a step forward, the individuals were not allowed to be part or interact with their community. The Renaissance was the first time in history that disabled individuals were considered as capable of thinking and learning. Schools and institutions for the disabled were set up throughout America and Europe, and attempts were made to educate and treat them. Laws were passed that allowed disabled individuals to be educated, but in segregated schools, far from the main cities and towns. Almshouses were created to provide shelter and care for beggars, most of whom suffered from some form of disability and the institutionalization of the developmentally disabled, especially those who suffered mental retardation, was encouraged. Most people suffering from intellectual disabilities were sent to such institutes or “correction houses” either for education, treatment or to live their entire lives. The first hospital with a separate section for intellectual disabilities and mental retardation was founded in Philadelphia in the year 1771.

Even as the world was slowly awakening to the plight of the developmentally disabled; an attitude of ignorance, disregard and disrespect was still widely prevalent among the population. Disabled individuals were still not allowed to be a part of the society and the institutions where they were being treated inevitably turned into a place where people could go to stare at them and mock their oddities. At such asylums, institutions and hospitals; the developmentally disabled were kept in cellars and displayed to the public; a shameful act that showcased a blatant disregard towards the plight of such individuals and violated their freedom. During these years, the world was beginning to show compassion towards the developmentally and intellectually disabled, yet there was still a long way to go before such individuals were treated with respect instead of mockery and revulsion.