Chasing bubbles with Alyssa

By the time Alyssa was one, the world of MRIs, doctor and therapy appointments was a familiar one to us. Even as a newborn, Alyssa’s eyes seemed to move involuntarily, so we pushed for an eye specialist to see her. We were stunned to learn then that the specialist believed despite some perception of light that Alyssa was functionally blind and never expected to see. Those eye movements were called “nystagmus” which made any focusing impossible. When following up with a neurologist at seven months, we learned something different. She had Cortical Visual Impairment (CVI), not blindness. Though not blind, her brain doesn’t process what she sees well and needed therapy to make the most of what she could perceive. Between learning about CVI, her brain malformations and their suspected effect on development, we had a steep learning curve.

We got her into therapy quickly and started to see some early responses. Still, she didn’t respond quite as expected, and some of what the therapists saw they wrote off to her vision. When she was about a year old, a geneticist noticed that she wasn’t responding typically to sounds and recommending having her hearing checked. Hearing? I was pretty thrown off guard with this revelation. Did she have a newborn hearing screening? No one ever mentioned her hearing before. I had seen her responding to sounds like doors closing and the microwave in another room. We didn’t realize until later that she should have alerted to us when talking to her or to each other. We knew she was behind developmentally, but everyone thought it was vision or developmental delay, and no one gave her quality of hearing much thought.

Like most parents, I knew very little about hearing loss. Her first test, while awake but quiet, was the Otoacoustic Emissions (OAE). The results indicated a moderate hearing loss, but the audiologist said this might be caused by fluid in her ears. She was sedated, tubes were placed, and an Auditory Brainstem Response (ABR) test administered while she was still asleep. Tubes did help; her hearing changed to a mild to moderate range. While Alyssa was in recovery, the audiologist explained what the tests showed and let us know that she would in fact need hearing aids.
By then, we were getting used to learning new diagnoses. After blindness and risks of cognitive delay, hearing didn’t seem to be that big of a hurdle. We threw ourselves into getting her fitted for her hearing aids and into therapy. It was beyond helpful to have the hearing coordinator, a non-doctor experienced in talking to new parents about their baby’s hearing loss, explain the next steps and help us pull a plan together with her huge, highlighted notebook illuminating the process and choices ahead.

In just those first blurry thirteen months, we had a lot of information to take in and no time in which to adjust to it. We learned that a child with mild hearing loss may have difficulty hearing soft speech or conversational speech in background noise, and that moderate loss would cause difficulty hearing normal conversational speech. Alyssa’s mild to moderate loss caused her to hear some sounds but not respond or discern others. If a child cannot hear all the speech sounds well, she will learn to talk the same way sounds are heard, and also have difficulty understanding spoken language. The hearing coordinator explained to us that Alyssa may not hear the sounds “p, sh and c,” for example, but hear a phrase like “piece of cake” as “iece of ake.” Without the use of hearing aids, she would be working so hard to make sense of what she heard. She might find classrooms and conversation confusing and stressful – learning would be more work than fun. She might disconnect from a world that didn’t make much sense.

Alyssa started therapy at home with a Magnolia Speech School therapist shortly after getting hearing aids, an early intervention program for babies birth to three that is free of charge. She also attends a special needs preschool (which has a total communication approach) at T.K. Martin Center for Technology and Disability on the Mississippi State University campus, and has PT, OT, feeding therapy and speech through Kid Therapy Spot. We are glad to know that she can stay at T. K. Martin until she is five. She is now 27 months old has made great progress over the past year.

We have learned many games to do at home to help improve her listening and communication skills. If she appears to hear or respond to a sound, we praise her and say, “Yay, you heard that!” We made an activity box with her favorite toys (animals, vehicles and people at this point) to help her see that specific sounds are associated with each one. We practice the six Ling Sounds with her too, knowing that if she respond to them and eventually learns to repeat them, we know aids are working across all frequencies.) Daily routines like meals, bathing, getting dressed and playing are also ideal opportunities to practice listening skills. We explain everything to her. Singing is another great way to engage her. Her favorites are popping bubbles, singing songs, story time and peek-a-boo. We rewarded any imitation of sound that she gave even if it wasn’t quite right. If she showed any interest in communicating, we’d jump on it to keep it going, even if we were in the middle of an important meeting.

We see such changes in her. From the moment Alyssa started wearing hearing aids, she began reacting to sounds she had never heard before. Now she looks for the person talking and explores the world around her much more. She said her second word ever within a few weeks of wearing them: “Bubba” for her older brother. (We highly recommend big brothers like Triston!) She started wearing glasses shortly after starting hearing aids to help with near-sightedness. Both glasses and hearing aids have opened up her world. Before, she seemed more closed off and to herself; disconnected. We are enjoying getting to know a more mobile, talkative, curious Alyssa as her world opens up.

Alyssa’s journey is just beginning. We know she will face down challenges, but we believe in her and have faith in her future. We had to embrace patience with her and ourselves. Some things we learned quickly, but learning how to best parent Alyssa comes more through educated trial and error. (We learned from experience that Ear Gear clips were a necessity to keep aids safe, for one thing!) There is nothing simple or easy about adjusting to the news that your baby has a hearing loss, visual impairment or any other medical condition. Some days we definitely feel in over our heads, but our new way of life feels more familiar the more bubbles we chase with her.

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Unrealistic Expectations/Measuring Success by Inches Instead of Miles

I have decided to put these two posts into one because I would like for them to be read consecutively.

“Unrealistic Expectations”

From the moment children are born they are put to the test and graded using the Apgar Score. Within the next few days of life they are screened for numerous conditions and have their hearing and vision tested. All of theses tests determine if the child has any known medical conditions. What does it mean if your child fails one of these tests or doctors discover your child has a condition? Will you love them any less? Will their life be any less meaningful? Sometimes placing too much pressure on a child to be perfect can be overwhelming, especially to the parents. Newborn screenings can potentially save a life due to early detection and intervention, but how often do the findings of an “abnormal” characteristic have an adverse effect?

Pregnancy is the time in a woman’s life when she should be the most calm and relaxed, but it’s pretty hard to stay calm when a doctor tells you that your child has a cyst on her brain and that it is a “soft sign” of Down Syndrome. Doctors love to get you all worked up and do all these fancy tests and ultrasounds that more times than not come back negative. I understand the importance of knowing 100 percent whether a child has a condition, but would not knowing change that person’s mind? Has medical technology and early detection gone too far and put even more expectations on a helpless child to be perfect? Why is it that we can’t simply accept whatever may be?

Society puts too many unrealistic expectations on children and families to fit into a certain mold of normalcy. Well, sorry to tell you but no one is normal or any more special than anyone else. We are all uniquely different so how can we classify what is normal or acceptable? Who are we to judge? Labels and stereotypes have ruined our society. No wonder bullying is at a high in our country. Children should be taught to see everyone as equal, and I’m not referring to color. Children come in all shapes and sizes. They may wear glasses, hearing aids or need one-on-one attention in the classroom. They shouldn’t be made to feel bad about these differences. We must all build self-esteem within our children starting at a very young age. Show them encouragement and let them know that it is ok if they can’t do what peers their same age are doing. Praise them for their differences.

“Measuring Success by Inches Instead of Miles”

In the special needs community the term inchstones is more widely used when referring to our children’s progress. Most children reach milestones one after another at a pretty fast and continuous pace (rolling, sitting, crawling, walking). My son, for instance, was walking at 9 months old. When you have a child that progresses on schedule, you take so much for granted. My special needs daughter has yet to fully master sitting on her own and she is 16 months old. But that is ok because I know how far she has come and I see new things that she is doing everyday. These things are no big deal to anyone else because most parents would consider them minuscule. But when my daughter drinks 7 ounces in one feeding or picks up a puff with two fingers and puts it in her mouth, I am celebrating! Success should not be measured by the miles we take to reach a goal but by the inches along the way that teach us how to see the bigger picture.

There are too many negative connotations associated with developmental and neurological delays. The term developmental milestones is poured down your throat in every pregnancy and newborn book you read. Children are expected to reach these milestones at a certain age and if they do not they are considered delayed. What the experts need to realize and factor in is that every child develops at their own rate, and although they may be behind their peers that does not mean they are not “normal.” And even if a child has a diagnosed developmental delay they should not be considered abnormal or made to feel bad about their differences.

Because of these negative connotations, some parents can be in denial about their child’s progress and often refuse to get them the help they need for fear of scrutiny. No one wants to admit or accept that their child has a “problem.” While it is true that not every child that is behind their peers reaching a milestone is developmentally delayed, there is still that chance that something additional could be going on that would require intervention. If you have a child that shows signs of developmental delays it is very easy to get your child evaluated and begin therapy to set them on a path for a brighter future. I have personally seen what a huge difference early intervention can make in a child’s life.

No one can ever prepare them self for having a child with special needs. The best thing you can do for your child when learning they have a certain condition or impairment is take yourself out of the equation. Now is not the time to say “why me?” Because you aren’t the one who has to live with these impairments. You aren’t the one who has to deal with the scrutiny and the pressure from society. Sure you will feel it because you will be by your child’s side and it will be hard to see them going through these things, but that is why it is your JOB to be strong for them and become their ADVOCATE above anything else. You are your child’s number one ally.

New Beginnings

Aly’s journey has continued to take us in new and exciting directions. A lot has changed over the past couple months. Aly got fitted for hearing aids in June and we have been working on getting her adjusted to them and starting her with at-home hearing therapy through Magnolia Speech School located in Jackson. Over the summer we learned Aly would be able to attend the preschool program Project IMPACT at T. K. Martin Center for Technology and Disablity in Starkville on the Mississippi State University Campus. This is the first year they are having a class for children as young as one. Aly’s class started mid-August and are on Tuesday and Thursday from 10:30-12.

Through speaking with her teacher and others at the school, I learned about a pediatric therapy center in Starkville that has a specialized therapy for children with feeding problems. Starkville seemed to be the best place for Aly, so we made the decision to move in order to be closer to her school and therapies. We have been in Starkville now for almost three weeks and Aly is starting her new therapies this week. We’re still waiting to get a time for phhysical therapy. On Monday, Aly had speech therapy at 10 and occupational therapy at 1. She spent the first day in each getting to know her new therapists and having them get to know her. It will take some time to get used to this back-to-back time slot. Each therapy lasts for an hour and we have two hours in between to eat lunch and get a quick nap in if Aly is up to it.

Aly’s older brother Triston, who will be three on Halloween, is also having to adjust to a new schedule. He gets into everything at her therapy, but there are times he can be a big help by participating. Like I tell her therapists, having big brother running around, making noises and playing with her is what she is used to at home, so it only makes sense that he would participate in her therapy. Triston has been a trooper and really seems to like his new house. Going to doctor appointments and therapies has been a part of his life for so long it has become the norm.

One of the most exciting things about Aly’s new therapy center is that her occupational therapist specializes in Cortical Visual Impairment (CVI). Aly was diagnosed with the neurological visual impairment through an MRI at five months old. Her vision has gone from appearing to be totally blind (having no light perception and no tracking or focusing) to now she can focus and track and see with better ease and understanding. It has taken a long time to get to where she is now and there is still much area to be improved on, but having a therapist who is familiar with lightbox therapy and CVI will make a huge difference. Her therapist is also going to be working with Jonathan and I on modifying Aly’s room and our house to be better suited for Aly’s learning needs. One thing I am hoping to gain from her new therapist is an at-home program that will focus on vision. Her other therapists (hearing, feeding) have already started her on programs and I have weekly goals/homework that I work on with her. The job of a parent with a child who has special needs never ends!

Aly’s occupational therapist will be doing paperwork to try to get Aly a lightbox and lightbox supplies for home use. I believe having a lightbox and a program to follow will take Aly to the next level. Through my frequent online research I came across a new product called the LightAide. “Bright and engaging, the LightAide creates a variety of interactive displays of color that support core learning goals and help instill the building blocks of literacy and mathematical concepts in learners with low vision, cognitive disablities and other special needs.” WonderBaby.org is hosting the Backpacking LightAide Program. Six families will be visited by Lily LightAide. Each family will get to hold on to the LightAide for two weeks to play with it and find out if it’s right for them. When the two weeks are up they’ll send it off to the next family. Each family will tell the world about the LightAide through blog posts, video uploads and socail media. At the end of the event all WonderBaby.org readers will get a chance to vote for one of the six families to receive the LightAide as a gift.

If our family is selected to participate in Backpacking LightAide Program it will be a great opportunity to experience a new piece of equipment and bring new readers to my blog and CVI website. This could be the push I need to finish my website and start working on my blog more. I am also making great connections locally in the CVI world and hope to find some partners for the Alyssa Greer CVI Foundation. Because of funding, partnering with an existing non-profit agency may be my best bet to get the foundation off the ground. I am hoping to be able to attend a conference at The University of Southern Mississippi on October 4. The main points of the conference are Understanding Cortical Visual Impairment, Hearing Loss and Dual Sensory Impairment, Increasing Participation Through Positioning and Tactile Input and Feeding Challenges in the Special Needs Population. I couldn’t have put together a better conference covering all areas of Aly’s needs if I tried! I will be able to learn so much and make even more connections by attending this conference.

I told you a lot has happened in a short amount of time! And that’s not all. I’m working very closely with Aly’s Early Intervention Coordinator to make sure Aly has every service available to her. After moving to Starkville, I started hearing about the Children’s Medical Program. Aly’s nurse at her new pediatrician’s office asked if Aly was enrolled in the program. I told her I had never even heard of it. Of course I went home and researched it myself and it appears to be another resource Aly qualifies for. According to the website, The Children’s Medical Program provides medical and surgical care to children with chronic or disabling conditions. The service is available to state residence free of charge under 21 years of age. “If your child was born with a disabling condition, or developed a disability or chronic illness, the program may be right for your family. CMP can organize care for your child’s condition, provide some equipment and medicaitons, and arrange for physical, occupational and other therapies.”

I’m also having Aly’s coordinator look into getting her services through the Deaf-Blind Project based out of Hattiesburg. I’m not very familiar with what services they offer, but I’m hoping they will be able to provide at-home therapy or family training in the area of deaf-blindness. Because Aly has visual and hearing impairments combined, it creates such severe communication and other developmental and educational needs that they cannot be accomodated in special education programs soley for children with deafness or children with blindness, according to the website. I still get blown away by how many services are available to families of children with special needs in the state. And all of these services are provided free of charge!

As a mother, it is my job to make sure my children are taken care of, and because my daughter has special needs, I must take on a new role as an advocate. Being a proactive advocate and providing Aly with every opportunity availabe is the best thing I can do for her. Aly’s journey is just beginning. We have already come such a long way and when I think about where she will be this time next year in her progress it brings me to tears because I have seen first-hand what early intervention has done in my child’s life. She has gone from only having therapy once a week for an hour and a half to now having an hour of physical therapy, occupational therapy, speech therapy, feeding therapy, hearing therapy and school twice a week. She has something to do every day during the week, and she is only 15 months old. She is my inspiration and my motivaiton.

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