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

Inclusion: Help or Hinderance?

For the past few years there has been an increased push for children of all ages with special needs to be integrated into “typical peer” situations. While it can be the magic ticket for some children, it is not for everyone.

The parents of many children with special needs want their child to be “normal”. Part of this is moving into a traditional classroom. Some parents push their children into “typical” peer groups as early as when they are infants with the hope that it will make it so. There is a case for this type of action, but there are cautions as well.

Pro: Inclusion is an older concept than many people think. Vygotsky discussed it in his theory of education. He felt that putting children in an environment where there are peers of varying abilities would eventually move children to the middle of the developmental range present in the classroom. Each child would learn, not only from their teacher, but from their peers as well. For children with special needs inclusion can be an ideal learning environment. They may benefit from more verbal peers who can help them with social speech skills. For example, children can learn how to use their words for conversation, pretend play, and turn taking skills by working with their classmates who talk more. Children also see how other children are behaving in group situations and can adapt theirs to match. Peers who are more mobile can also motivate children with challenges to join in the fun.

Cons: For some children inclusion is extremely difficult. For those with extreme needs, even having a personal aid may not be enough for them to fully engage with others in the class. Children with severe motor needs and decreased cognitive ability may not reap the same benefits from an inclusion situation. These children may end up sitting alone or not receive the individualized care that they need to prevent pressure sores or other medical issues. In the same light, children with issues such as autism may find the inclusion classroom too stimulating for them. This can cause behavioral outbursts, self abusive behavior, and self-isolation. Likewise, an aid can do too much for the child or make too many exceptions to the point where the child is doing little to no work in the inclusion classroom. While the inclusion may be the least restrictive environment, the structure may not be ideal for the best possible outcome.

Special Considerations: All of this being said, there are some factors which also need to be considered. Some schools have a well established and tested program for inclusion. They introduce inclusion in a scheduled and monitored manner. They utilize transition tools such as Picture Exchange Communication Systems (PECS) and social stories to help make the process easier. The educational team meets regularly to discuss concerns and brainstorm solutions. Other schools are not as organized. In these situations, children may be placed into a “typical” classroom without the support needed to be successful. Teachers and aids may not be trained on communication and motor needs or how to engage children with special needs. The team may not communicate amongst themselves or with the family. Without good support and communication, the success of the inclusion program is limited.

Parents need to truly look at their child and determine the abilities and issues which can make inclusion helpful or harmful for them. Talking to the school about their policies, communication, and support for not only the child but the rest of the team can help determine if inclusion is a good fit. Inclusion is not for everyone. Some children need more attention throughout their day. By taking the time to truly examine the needs and abilities of the child and how they can work within the different classroom options, parents and educational teams can find the most successful and appropriate placement!

©R. Wellman 2011

The Benefits of Hippotherapy in Children With Cerebral Palsy.

Pioneered by German, Swiss and Austrian therapists during the 1960’s, then standardized in the United States and Canada during the 1980’s, the treatment strategy of hippotherapy (“hippo” is the Greek word for “horse” ) has evolved into a highly valued form of physical, occupational and speech therapy for children with cerebral palsy. In numerous cases it has resulted in dramatic improvements to both motor skills and emotional well-being.

Hippotherapy programs have been developed for children of all degrees of motion and ability. While some facilities have been created specifically for hippotherapy, most programs take place on full range horse farms led by a team of therapists, including a physical therapist, a horse handler and sometimes a speech/language therapist. Physical therapists can receive board certification from the American Hippotherapy Association. They are there to guide and monitor the child for issues of balance and control. The horse handler is there to ensure safety and provide basic riding instruction to both child and parent.

The driving principle behind hippotherapy is that the horse is influencing the client, rather than the client endeavoring to control the horse. (There are no age limits to hippotherapy, but for purpose of this article we are talking specifically about children with CP.) The child is positioned on the horse by a physical therapist and horse handler. By responding to the horse’s natural (yet carefully monitored) movements, the child involuntarily activates neglected muscle groups to sit up straighter, maintain better balance and motor plan new movements. That’s the mechanics of it. But as most anyone involved with hippotherapy will assure you, there’s also the less tangible, but equally therapeutic bond that develops between child and horse.

In the process of riding, the child will naturally match the rhythms established by the horse’s movement. The horse’s pelvic movements actually mirror that of the human pelvis. The walking horse literally moves the body of the child in a more natural walking pattern than they are probably used to. Consistent riding often leads to improved muscle tone, motor function and overall sense of balance.

With the help of a speech therapist, the simple verbal commands given by the horse handler to control the horse are progressively given over to the child. Many speech therapists rate this particular discipline as one of the most successful they’ve encountered. The process and results of this process can be very empowering for the child, improving their overall level of self-esteem and sense of well-being.

Hippotherapy is not appropriate treatment for every single child with cerebral palsy, but it might be something to consider and discuss with your child’s physical therapist and pediatrician. Unfortunately at this time, very few health insurance plans cover this type of therapy.

As with all physical endeavors, there are some risks when working with large animals. To ensure safety, your child must be able to digest and follow simple rules of instructions from the horse handler. Make sure that you’re working with the right people and see that your child is properly outfitted, including a well-fitting helmet and body padding.

Hippotherapy is a fascinating process, one that has yielded tremendous results. Is it right for you and your child? The potential benefits make it at least worth an investigation.

How Does Early Intervention Make A Difference?

Deficiencies and problems in each autistic child are unique and cannot be classified under broader groups. Hence, the types of treatment for each autistic kid or adult is typically designed intuitively and creatively so that the person can take part in certain activities without having any adverse reactions. Treatment for autism varies based on each case, making it absolutely crucial to figure out as much about the patient as possible before designing the treatment chart.

Early intervention and early education can help an individual unravel his/her shortcomings and learn to deal with them in an effective way. Behavioral therapies or medicines, or a combination of the two can help in dealing with the child’s problems. Autistic children usually have accompanying problems such as seizures, gastrointestinal distress and sleep deficiency. Proper treatment of these disorders can help in improving the individual’s attentiveness and focus while increasing his/her ability of retaining data.

In the early stages, behavioral therapy requires cooperation between the professional treatment group and the autistic individual’s family. There are often cases when the sessions are held at an affected individual’s home. Treatment programs involve parent training so that the parents can also hold sessions under the guidance and supervision of trained professionals. Sessions are otherwise carried out in specialized centers, preschool or classrooms.

Methods of therapy and intervention are often flexible and open-minded so that tweaking is possible so that it suits the particular requirements of the affected person. For example, when an autistic kid joins a school, he/she would reap the benefits of specialized teaching approaches while developing fundamental social skills. On the other hand, autistic adolescents are better treated independently, as they can learn well from vocational skills which help them find the right modes of employment.

Autism early education can help an affected child learn a lot about their problem and help correct it in due time. Among the most popular treatment options for autistic children are the Early Start Model, and the Lovass Model. Other behavioral treatments include Floortime, Pivotal Response Therapy and Verbal Behavior Therapy – all of which have yielded excellent results.

While these treatment methods can help your child to deal with autism, it is essential that the child is diagnosed at an early age because it makes it easier for them to grow out of the disorder. Early treatment can help your child grow and perform to the best of their abilities and live a healthy life.