Jessie Mines is a parent who joined the Indiana Deaf-Blind Services Project Family Leadership Training Program. Her goal was to learn more about deaf-blindness and how to help her daughter, Sheyla; as well as learn more about how to help other families of children who are deaf-blind in Indiana.
My name is Jessie Mines. I was married at an early age and by the time I was 25 years old I had four children. While my children were still young, I was divorced and by 1996, my children were all grown, had finished college, married and had children of their own. I became their child-care provider and in 1997, we moved to Indianapolis.
After moving to Indianapolis, I took classes and was licensed as a foster parent in July of 1999. In November of that same year, I became a foster parent for Sheyla Ireen Aponte and her mother Jennie Aponte.
Sheyla had been born on July 15, 1999 with something called Dandy Walker Syndrome. She was only about 4 months old when I met her and she was such a beautiful baby! At that time, we thought she couldn’t see or hear anything. All of her senses: sight, hearing, touch, smell and taste were affected by her condition. The doctors said that Sheyla could only see shadows. She had no hearing in the right ear, but she could hear some things in the left ear. (We know now that she can hear the phone ring, airplanes, and other things that are loud.)
Because all of her senses were affected, we tried things to help her improve them. To help Sheyla improve her sense of smell, we would let her smell different things. I would put baby powder and baby oil on her.
Taste was hard. She only knew milk for a long time. I couldn’t tell for certain if she liked the taste, but I thought she liked it by the way she ate.
At 5 and half months, I put her on baby food. At that point, I found out that she had trouble swallowing. When I put her on baby food with chunks, we learned that she wasn’t chewing her food. At nine months, she still had problems swallowing and we did a swallow test. We worked with her OT on chewing and swallowing for a very long time. At 18 months, she still only weighed about 20 pounds. She was very small and underweight and all through this time Sheyla needed a lot of extra nourishment and vitamins.
While Sheyla was still very young, her mother was with me at my home and going to school. She would come in from school, look at Sheyla and would put Sheyla’s thumb in her mouth. I didn’t know this until one day I saw her do this and not long after, Sheyla was sucking her thumb. I knew that was something Sheyla had learned, and it made me think she could learn, even though the doctors had told me that she would be like a vegetable. I thought, “Sheyla has a body and a soul.” We know the soul is made up of your mind, your will and your emotion. Sheyla had these and she could learn.
So I worked with Sheyla from the very beginning. When she was four months old, I would put a pillow behind her back in the baby bed to help her to sit up. Every morning I would pull her legs back and forth by bending them while she was in a bed and roll her over and over on the bed. I would put a bellyband on her to help give her strength to sit up. (A bellyband is a smooth piece of cloth, usually it is a cotton piece, and it is wrapped around the belly and back, across the navel to provide support.) All of these things, and just working with Sheyla all of the time, helped give her enough strength so that she was able to learn to sit up.
By the time Sheyla was five months old, she could sit up all by herself. She would not sit up long, so I kept the bellyband on her to give her support. I kept her on the floor all of the time or sitting in her baby bed or swing.
I would give her a bath every morning and she would cry and scream because she wasn’t used to the water. But when I got her dressed and laid her down, she would rock her head from one side to the other and go right back to sleep. When she lay down, she would always shake her head back and forth. And she didn’t like to be held or touched very much. Even today, you would have to force a hug out of her. If she were held for too long, she would cry. She preferred to lie down by herself or be propped up with a pillow in her crib.
When she was not sleeping, Sheyla would hold her hands up in front of her eyes. This let me know that she had some sight. I think she stopped shaking her head and holding her hands up in front of the light when she started sucking her thumb.
Therapy from First Steps started with Sheyla at five months old. First Steps and therapy at Crossroads was a great help in Sheyla’s development. Sheyla had physical therapy, developmental therapy, occupational therapy, speech therapy and vision therapy. “All this therapy?!” I said. “Sheyla is going to be fine.” I had no idea Sheyla would be slow to learn, as she is today. She does learn, but it takes a lot of time.
Sheyla started wearing glasses at five months, when she started vision therapy. Vision therapy helped improve her vision because, at first, she could only see what was directly in front of her. Sheyla worked on moving her eyes from left to right (tracking) and strengthening her peripheral vision. She had vision therapy sessions from five months until she was nine years old.
In 2000, Sheyla’s mother left my house, was terminated from being Sheyla’s mother, and was dropped from the foster care program. Sheyla was seven months old and was left in my care as her foster mother.
I continued to work with Sheyla trying to get her to do things and to play. This was hard because she didn’t really like to play with toys. Even today she likes to do “her own thing.” But, I would put toys all around her, especially ones that I found that she did like. At first I would go get a toy that she wanted, when they rolled away from her. Then when I was trying to get her to crawl, I decided to stop doing that. When the toy would roll away from her, she learned to roll herself toward the toy until she could reach it. Then one day, she wanted a toy and I noticed that she had started scooting on her stomach toward it, using her elbows. Finally, at 18 months old, Sheyla had learned to crawl “Sheyla style”. She crawled on her stomach for a pretty long while - almost nine months. But, I wanted to her crawl on her hands and knees like other children. So, I got a sheet and folded it and put it under her stomach. Then, I stood above her and held the sheet so that it supported Sheyla so she could be on her hands and knees. I would pull her forward with the sheet so she could learn how to crawl on her knees. I did this for about 2 months before she started to crawl that way on her own.
At age two, Sheyla got braces because the muscles in her legs were weak. The doctor said the braces would help to strengthen her legs. He said that she needed to exercise her legs and said it would be helpful to have her stand on her toes, as much as possible, to strengthen her legs and help with balance. We worked on this by letting her pull up on the table and once she was standing, we made her stand alone. A lot of times, the other children that I cared for would help Sheyla by pulling her up and holding her a few minutes.
At this time, I decided to adopt her. At first, my kids didn’t want me to because she had so many health issues. The caseworker came in and talked to my family about all of the help that I could get for Sheyla and that I wouldn’t have to take care for her by myself. The caseworker also told us that Sheyla’s insurance and assistance would not change when I adopted her. That relieved my family and when they saw that I was determined, they came around. From that point on, we were all very positive about adopting Sheyla.
Sheyla had therapy at home until she was three. At that point, she was no longer eligible for First Steps. From then on, Sheyla had therapy at Crossroads (OT, PT, speech therapy and vision therapy) and just a little (15 minutes) at school.
The way Sheyla finally learned how to chew was through therapy provided by her Occupational Therapist (OT) at Crossroads. One of the suggestions the OT had me do, was to use a brush they called a Nuk brush. This is a hard brush with a nubby end that is used to desensitize a person’s mouth and gums, as well as introduce different tastes and textures. Sheyla had to bite on the Nuk brush. This was to make her jaws stronger, so that she would be better able to chew. The second thing that the OT had us do was to give Sheyla two to three drops of liquid after we gave her four bites of food to encourage chewing and swallowing and to clear her mouth when she would eat.
At the same time, we were trying to get her to brush her teeth. The OT told me to take Sheyla’s toothbrush and rub it on the outside of her lip or “tickle” her lip. This was so that I could get the brush in her mouth. Then I would guide the toothbrush inside to brush her teeth. Sheyla didn’t like to brush her teeth and to this day she still doesn’t like me to brush her teeth. I still have to “tickle” her lip to get the toothbrush in her mouth. Sometimes, I give the brush to Sheyla and let her try to do it herself, but she doesn’t brush - she just takes the toothbrush and chews it.
The OT also had me start working with Sheyla on routines and doing things hand over hand to help her. She wanted Sheyla to pick up objects that she dropped on the floor and taught me to put my hand and her hand over the object for her to pick it up. That is how we started making her pick up stuff. The therapists also encouraged me to let her pick up her toys and put them away and to clean up the table and throw things in the trash. In order to help Sheyla learn, we had to do the activities with her and do entire routines from the beginning to the middle to the end. For example, we would get food, eat and then clean up the table and throw away the trash.
Sheyla first went to school at age three. She wasn’t walking yet, but I would put her in the stroller and roll her to the bus. She was gone from 8-12. At school, we found that Sheyla loved to play with water. She would crawl up to the sink to play in the water. This is how we got Sheyla to walk – by using water as a motivator. At school she would pull herself to the sink and she couldn’t reach the tap, so she had to get up on her toes. The doctor had said that being on her toes like that would help Sheyla, so at home I would let her crawl to the sink and pull herself up to play in the water. When we made her pull-up to play in the water, it helped to strengthen her ankles and the muscles in her legs. That’s how she finally got strong enough to be able to start walking. Sheyla was almost four at this time.
Sheyla went to one school until she was six and then she moved to another school that was closer to our home. I thought she would have done better at the first school where there were more teachers and assistants in the classroom. (Sheyla needed, and still needs, someone to work with her one on one to help her focus on what you want her to learn. ) Because Sheyla didn’t have the support that she needed, I wanted to move her to another school. I tried to get her into the School for the Deaf, but they turned her down. I finally home-schooled Sheyla for a couple of years. I thought she made progress during that time, but her doctor wanted her to socialize with other children more and she went back to public school in 2009. The teachers, staff, and overall discipline was better. but the school still didn’t have the amount of time to focus on Sheyla and give her the amount of attention she needs in order to retain knowledge and skills. Sheyla needs repetition [in her curriculum] in order to truly master a task. Her notes from school now say that she participates, but they don’t know how much she’s retaining or how much she knows.
Sheyla won’t voluntarily do things on her own, but she knows what she wants. She will point to things that she wants and if she wants a specific thing (like cereal) she will get that picture. She can do and learn many things. But she is still inconsistent. Sheyla can do something today and then tomorrow she will act like she never saw that activity before.
Over the years, I have learned to be patient and to keep with it. You may let what you want your child to learn go for a while, but always come back to it until you can see them do it and you know they can master it. It may take many years. With children who are deafblind, we have to introduce learning to them and practice things many times. You, youself, have to practice patience. You are building trust - in what you are doing and also with the child. Don’t give up!
I have learned to reach out for help. A lot of things that I learned to do with Sheyla, I learned from her therapists. They showed me patience with her, but in being patient you have to be sure that the child doesn’t become lazy. When I am doing something with Sheyla and she doesn’t want to do it, she will make a noise and signs or she might just stand there. I will insist. I like to say to Sheyla that, “You can do this” or I’ll say, “You are going to do this,” and she does it. One of the big things I have learned is not to focus on “wishing.” Wishing is short term. Have you ever said I wish you would stop doing that? Or, I wish it would stop raining? On the other hand, hoping is long term. I hope that Sheyla will have a good future and I hope I can prepare her for her future.