This is what I am sure of. There are millions of parents in this world. But there are only a select few with special needs children. No matter what you believe, this child was not given to you by mistake. You were chosen. You were entrusted to lead, guide and nurture that child. It's not by mistake; it's by design.
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How We Did ItA Story of How a Single Mother Raised a Special-Needs Child
By Tascha L. Stith
BALBOA PRESSCopyright © 2012 Tascha L. Stith
All right reserved.
Chapter OneNine Months
NINE months seems like a lifetime when you are pregnant. Your feet swell, they hurt, and you are tired and sleepy all the time. Your belly is growing at a rapid speed, and your body is changing every single day. Your face is shining bright, and you have this aura about you. Your hormones are all over the place, and you cry at the drop of a dime; when I say everything is happening, I mean everything. You spend more time in the bathroom than you've ever spent—you could have gone literally five minutes ago, but as soon as you get done, you're right back there again.
It's so amazing to look back at all you go through when you're pregnant. But what most people don't know is that you also go through other things that aren't all that exciting. I remember waking up one morning unable to walk because my baby had decided that she needed a more comfortable position. Although it was the most painful feeling to me, it sure was not to her. I had to go to the doctor so they could reposition her because she was sitting on my pelvis. Imagine that.
Pregnancy has been regarded as the most exciting thing you could ever experience, but this isn't true for everyone. I was stressed and sad most of the time. I was not looking forward to being a single parent, and I had no idea how I was going to do it. I had just relocated to Ohio; I was unemployed temporarily and living at home with my mother. That's no way to start your family. This was especially hard because I had served in the military, so I hadn't lived at home since I was seventeen. But there I was, back at home. I was fortunate enough to obtain a job with the state of Ohio. I truly believe they thought I was just fat and had no idea I was pregnant or within ninety days of giving birth. I don't believe they would have hired me if they had known.
I moved out of my mother's house into my own apartment right before giving birth. I went shopping and started making plans for the day I would become a mom. This was exciting—all of the cute clothes, all the different types of bottles, all the baby toys, the cute beds and blankets. Everything was so pretty, but something told me to buy all neutral colors. I didn't know the sex of the baby, and I didn't want to know—I wanted it to be a surprise. I started picking out names for both girls and boys.
Then, reality set in. I was sitting on the couch, and my belly did the wave. I watched my belly move up and down and sideways, and it became more and more apparent that it would not be long before the little person inside of me would be here. I sat there in amazement. My belly got hard on one side. I looked lopsided because the baby had decided to find a more comfortable position and stick his or her butt out. So, on one side I had this hard bulge. I called my mom and asked her why my belly was looking like that. She felt my belly and said, "Girl, that's the baby's butt." Sure enough, when I went to the doctor the next morning, it was the baby's butt. It had turned itself into the breach position and had pushed its butt to my left side. I had some time before giving birth, so he wasn't that concerned. He believed the baby would turn around, and it did, but boy was that uncomfortable.
He also informed me that I was doing well, considering that early in my pregnancy I was diagnosed with placenta previa. This is very dangerous because it can cause miscarriage; my pregnancy was then considered high risk. I have to assume that it corrected itself on its own. I am not a doctor, so I only give you the facts as they were given to me.
Chapter TwoHere Comes a Baby!
I woke up one morning and had to go to another doctor's appointment. Because I was getting closer to my due date, my appointments were weekly. However, when I went to the bathroom, I was bleeding. I was at my mom's house, and I called out for her and asked her if I was supposed to be bleeding. She said, "No, you are in labor." This would explain why I was so uncomfortable all night and barely slept. The bleeding is called "show" or "bloody show;" it is a sign that the cervix has dilated somewhat and the onset of labor is imminent.
I got dressed and went to my doctor's appointment, and sure enough, I was in labor, with my contractions about eight to ten minutes apart. They monitored me for a while, then sent me home and told me to come back when my contractions where about three to five minutes apart. No one ever told me it would take thirty-one hours.
I went back to the hospital later that day, but I had only dilated one centimeter, so they sent me back home again. I went back to the hospital several hours later. I was tired from walking all day and waiting. The nurse came in to see me, but she did something strange. She gave me this little red pill to help me rest. She told me it was going to be awhile because I was now only two centimeters. She also told me that this pill would not affect the baby, but that I needed to sleep because it was going to be a long night, and she sent me home again.
This process was taking quite a long time! I ended up back in the hospital that night, and that little red pill she gave me was not doing a thing—nothing to me, at least. Thirty-one hours later, it's November 25, 1993, Thanksgiving Day! She arrived at 7:02 a.m. She weighed five pounds, three ounces and was nineteen inches long. She had all ten fingers and toes. She had the most beautiful hair and eyes. She was the most beautiful thing I had ever seen. You could literally hold her in one hand like a five-pound bag of sugar.
She just looked at me and I looked at her, and I didn't know what to do, what to feel. I knew absolutely nothing. She did not have a book, a manual, an instruction certificate, or anything like that with her. They took her away to clean her up and check her out. While they were tending to her, something was wrong with me. They couldn't stop the bleeding. I remember dozing on and off as they worked on me for a while. I guess that pill had started working.
Finally, they got me together and took me to my room, where I passed out. I was exhausted; I had been in labor for thirty-one hours and it had kicked my butt. I saw her for a little while, but they wanted me to rest, and I wanted to rest. Now I have heard people say they didn't want the nurses or doctors to take their babies out of the room, but it wasn't that way for me. They took her, and I was relieved. Have you ever heard of "baby blues" or postpartum depression? I was already experiencing it. "The difficulty bonding with my baby and the sadness were signs that it was affecting me."
I was somewhat detached. I couldn't breastfeed, although I tried, she had a problem with the sucking technique even with a bottle. I suppose that should have been the first sign, but I did not know any better. They continued to try to get me to breastfeed; they tried the breast pump as well. I started to bleed from my nipples, so that was not going to work. They cleaned me up, using warm compresses to relieve the pain, but all that did was cause my breast to leak milk and hurt even more. You would think if she was not latching on to the breast, she'd take a bottle, but that didn't work either. We ended up staying in the hospital for a few extra days.
Just as we were getting ready to check out, the nurse who had been with me all night came to my room. At the time, this didn't seem strange. She was wonderful and had taken care of my baby and me for several hours. It later dawned on me that these people see women deliver babies twenty-four hours a day, seven days a week, 365 days a year. So what made my baby and me so special? Did she know something had gone wrong during my delivery? When I discovered that something was wrong with Jasmine, I requested my medical records only to find that there were missing pages. It became apparent that mine was not a normal delivery. I discovered that my baby had lost oxygen for over ten minutes. Also, I was rushed from the birthing room to the delivery room, which was more like an EMERGENCY room.
The birthing room was set up for me to deliver my baby right there. There were monitors, the stirrups for my feet, the whole shebang. The doctor would come in often to monitor my dilation progress. The nurses prepped me and made sure I was ready when the time came. I was sure I was going to deliver right there. They had prepared this room and even told me it wouldn't be long—that they just wanted to make sure I was fully dilated (that would be 10 centimeters). The delivery room, by contrast, should be called the EMERGENCY room. In this room, I went from being prepped for delivery, to being turned on all fours like a dog.
I believe this is when my pregnancy became even more complicated. I was in so much pain that I agreed to have an epidural; I could not take it anymore. From that moment on, things changed and they changed rapidly. Do I believe it was because of the epidural? Not necessarily. I'm just stating the facts as they occurred. Since I was there, who knows better than me? Why do I believe that? Prior to the epidural, I was in labor, and had been there for a long time. However, as soon as I got the epidural, everything changed. They started putting this buzzing horn-like thing on my stomach to get a response from the baby. She would come down and then go back up. They told me she was falling asleep and had to be wakened (remember that little red pill that wasn't supposed to affect my baby—that would be the first lie).
My water broke within minutes of the epidural; everything started to feel chaotic to me. The relaxing, calm environment became panicked. My cousin was put out of the birthing room, and I was rushed to the delivery room. I remember my cousin crying hysterically and asking questions. She wanted to know why and where they were taking us, and if we were going to be all right. She already had two children of her own, so it was obvious to her that something was wrong. Why else would she be panicking?
I remember telling the nurse I have to push. She said, "Don't, not yet." Then she smiled and said, "Everything is going to be all right." I told her I felt like I had to go to the bathroom; she said, "Oh, this is going to be the best bowel movement you will ever have." I didn't know why she said that. I also did not know that when having a baby, you could have a bowel movement right there on the table. The next thing I remember was seeing my cousin, and hearing her telling me how beautiful my baby was. It seemed as though I was in some kind of fog. Once I got into that delivery room everything was happening so fast.
I got to my room and slept for a while. When they brought her in later, I was told that she had a little jaundice and they wanted to keep her under the light. I saw my family later that day. They brought me Thanksgiving dinner and sweet potato pie. That was Thanksgiving for us!
Chapter ThreeWhen did I know?
THE truth is, I didn't know. There was something that my dad said to me. He said, "Whatever you do, you take care of this baby." Well, hell Dad, what did you think I was going to do? I may have been young, but you have always said that I was responsible, and that you were proud of my accomplishments. I hadn't accomplished anything compared to this! The truth is, my dad knew something was wrong! He died when my daughter was two and a half years old, and his wife later told me that he was worried from the first day he saw Jasmine.
Why would he be worried? She didn't look different. There was nothing wrong with her. Or, was I in denial? Looking back, I believe I was in denial. I truly don't know, but I do know that by the time she was able to see and focus, she was very cross-eyed. Her beautiful eyes had turned toward her nose; this was the first sign. She wasn't crawling, she wasn't sitting up on her own, and she was barely making "goo goo gaa gaa" noises. She was several months behind in her development, according to the timetable charts for babies. She mostly smiled and played with her feet. If it weren't for my aunt telling me to get out of denial and find out what was going on with this baby, I believe I would have stayed there—lost, confused, and working myself into a tizzy.
She was crying all the time. I was up all hours of the night, calling everyone I knew, thinking she had colic. I gave her water with a dash of lemon-lime soda, and a little baking soda. It was an old school remedy from my grandmother. I took all the advice from everyone I knew with children. Still not wanting to believe, see, or realize that something was wrong.
Then the doctor's visits began. I spent more time at the hospitals than I did eating or sleeping. She had multiple ear infections; the doctors tried every antibiotic available. This went on forever, and then came the threat of death. They didn't know what was wrong, but she was severely ill. When she was seven months old, she was diagnosed with Coxsackie Virus. Her temperature was 104 degrees and rising. The doctors initially thought it was another ear infection and put her on more antibiotics. Two days later, she had a temperature of 105 degrees and we were back in the emergency room. But this time we were admitted.
The doctors said we needed to get her temperature down; if it rose to 106 degrees, it would be life threatening. I was freaking out. We had been there shortly before, and the doctors said it was just another ear infection! This was when we were told about the Coxsackie virus and placed in isolation. I was told it was life threatening, and no one could see her except me. I had to wear sterilized clothing while in her room, so I wouldn't transmit any germs. She later developed a red rash all over her body, and that's when she started to get better. In reality, her body was fighting the virus. She had several more ear infections, plus eye surgery by the time she was 8 months.
I have never been given a definitive diagnosis of what made her sick. I remember going to my OB/GYN appointment when I was thirty-seven weeks pregnant. The doctor, who wasn't my regular physician, said to me, "Are you sure your baby is due in November?" I said, "That's what they have always told me." He said, "He doesn't appear to be getting any bigger. If he doesn't come on the date they say, don't let them induce your labor. He will come when he is ready, and I want to see him get bigger." Yes, I said "him." They said she was a boy. Can you see I knew absolutely nothing? I just listened to everything those doctors told me. I say this because once Jasmine was here things changed.
I stopped taking advice from others. I did some digging and found the best doctors in their fields, because I demanded it and my child deserved it! I wanted to know what qualified them to treat and diagnosis my daughter. I wouldn't see doctors who were residents, because they were still in training; and I understand that they grow and perfect themselves through training, but not with my daughter.
Jasmine continued to get one ear infection after another. The antibiotics were not working, and the only thing they could tell me was that she was just behind, but that she would catch up. No one knew what was wrong with her. She was a beautiful little girl, smiling and happy. The only problem that anyone could see was that she wasn't doing things that babies her age were supposed to do. She was very small for her weight, and she has stayed in the forty percentile for the majority of her life. Due to all the medications she was on, she wasn't eating much. Side note here—when you read the labels on the medications listing all the side effects, believe them!
Ninety percent of the people suffer side effects of taking medications—one of them being loss of appetite—and Jasmine was no exception. She hardly ate, mostly because she was sleeping all the time— drowsiness was yet another side effect. My point here is that the doctors do not know everything. I'm not taking shots at those who have spent their lives studying medicine, but it's the truth. All I am saying is no one will know your child better than you, because you see it all. The doctors only see the children when you take them to clinics, or emergency rooms. This is to say that sometimes your instinct—that little voice—tells you something. Do not ignore it and don't let denial cause you to ignore your parental instincts. When you see or feel something is wrong, don't wait! Demand someone to listen to you, because your baby's life depends on it.
Chapter FourThe Diagnosis
THEY still don't know, and we've all heard of Autism Spectrum Disorder, Down Syndrome, Cerebral Palsy and a host of others. Have you ever heard of Developmentally Delayed with Mental Retardation, Multiple Handicap with Epilepsy Seizure Disorder? Well, this has its own category, and it's classified as non-specific (NOS), meaning it's not in one of the categories I listed above. The doctors believe it is caused by a lack of oxygen during birth, and this is what happened to Jasmine. She's also been diagnosed with Attention Deficit Hyperactivity Disorder (ADHD/ADD).
Excerpted from How We Did It by Tascha L. Stith Copyright © 2012 by Tascha L. Stith. Excerpted by permission of BALBOA PRESS. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Chapter 1. Nine Months....................1
Chapter 2. Here Comes a Baby!....................5
Chapter 3. When did I know?....................11
Chapter 4. The Diagnosis....................15
Chapter 5. It's Never Easy!....................19
Chapter 6. What To Do Now?....................23
Chapter 7. Epilepsy Seizure Disorder....................25
Chapter 8. Never Give Up and Never Quit!....................33
Chapter 9. Sacrifice....................39
Chapter 10. Discipline....................41
Chapter 11. Puberty....................51
Chapter 12. Schooling....................57
Chapter 13. They're Adults—Guardianship....................65
Chapter 14. People and Relationships....................71
Chapter 15. Taking Care of Yourself....................75
Chapter 16. The Results....................79
Some of our Memories....................85
Most Helpful Customer Reviews
You learn very few details about the child. This book was more how mom did it on her own and didn't let anyone walk on her. It's written in a very immature tone. The book was only 74 pages. Would not have brought it if I had known all this.