In 1987, when Pat Linkhorn found herself raising two daughters with special needs, she had to rely on letters to get the information she needed. These days, the process of finding information for children with disabilities is much more straightforward. In this collection of writings, Linkhorn shares a personal account of her experiences and offers advice on dealing with the various issues that she encountered through the years.
Linkhorn hopes to help parents of special needs children find the humor amid the absurdity of life. Join her as she recalls navigating the choppy waters of serving as an advocate for her children and others with special needs. She offers advice on making decisions that benefit special needs children; dealing effectively with agencies, committees, and people; and telling your story in a way that generates attention.
As the mother of one autistic daughter and another who was born prematurely and is blind, Linkhorn has dealt with and worked for numerous social and educational agencies devoted to helping special needs individuals for more than twenty years. No longer constrained by agency rules and guidelines, she is off the fence and she tells her tale of survival and victory and explains how the system really works.
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OFF THE FENCE
By Pat Linkhorn
iUniverse LLCCopyright © 2013 Pat Linkhorn
All rights reserved.
Off the fence at last
I spent close to twenty years working within the disability and special educational system. I have children with disabilities, and I actively advocated for better services for them. I also worked with and for professionals and agencies that provided services to families and their children with disabilities and developmental delays. I could never be completely parent or completely advocate or mentor. I had to balance the needs and requirements of both roles, so I felt as if I had one foot on each side of the proverbial fence.
In theory, I should have been able to develop a baseline of how I could or should react to different situations. Yes, there were guidelines, and yes, I was a mentor to parents and not the voice of the parents. I was there to explain the rights to the parents and to help them work with the system. On paper, that is pretty straightforward. In reality, this was not so much so.
At one point, I worked with six different school districts. Each had its own personality. To further complicate things, each building within each school district—preschools, elementary schools, middle schools, and high schools—had its own personality, as well. The principal of each school had his or her own views and policies for his or her building. In addition, the special education coordinators for each district had the authority to approve or commit the school district to provide specific services. The principals and special education coordinators were those about whom I needed to know the most.
We can't forget the teachers. They were the hands-on people who actually spent the most time with the children. They could make a plan work, or they could make it fail. Over the years, I've met some wonderful special education teachers and some awesome regular education teachers. I've also met some in both categories who were probably better suited to ditch digging.
I've also had many, many off-the-record conversations with teachers and aides who would call me off to the side and say, "You can't say you heard this from me, but this is what's really going on."
When my kids were in grade school and in classes with their regular-education peers, I always asked that the teacher who volunteered to have them in their class be their teacher. When I passed this strategy on to other parents, it sometimes worked for them. Sometimes, though, it didn't because some schools have practices or policies that don't allow for that type of choice.
Some school districts liked me. Others hated me. Some parents actively worked to learn what their rights were, and others just wanted me to fix the problems. Each situation called for different approaches. Much of what I was able to do depended on my relationship with the professionals involved.
One special education coordinator was known to say no before you could finish the question. Another went out of his way to provide the best services available.
One strategy I used with a lot of success was to ask parents if I could call the school so I would know exactly what kind of services their children were currently receiving. It also gave me a chance to talk to the teacher or principal and get those people's perspective on what was happening. It further served to let the school know that I was involved in helping the parent and was interested in both sides of the story.
Many times, that one call could resolve a problem. Parents hear what is being said but don't always understand what is meant. Schools sometimes use jargon with which parents aren't familiar. Oftentimes, emotions are running so high that words have no meaning for parents. There were many cases in which both parties were saying the same thing but were using different words.
One agency I worked for was aghast at this strategy and told me I was never, under any circumstances, to ever call the school. I'm still shaking my head over that one!
I also worked under different conditions with different agencies. One agency did spot-on evaluations on my job performance. One said, "Here, fill this out. Don't make it too good." Others filled out evaluations even if they had had no contact with me over the past year. Another did yearly evaluations, but when I asked for clarifications on some comments, my request was ignored and my contract wasn't renewed. Go figure!
It's the same with all agencies and school districts. Policies don't matter if they aren't implemented. People and their personalities play a big part in how things happen. A misinterpretation of what was said can set the tone for an entire meeting. Limitations in what you can say can make a difference. Interpretations of rules or policies can vastly affect outcomes.
One time, a friend whose wife taught in one of my school districts told me what his wife told him had been said at a staff meeting. (Are you totally confused yet?) The staff had been told to not tell parents that their children were having difficulty seeing things written on the chalkboard or that they appeared to have difficulty seeing the words in books because said parent might demand that the school pay for eyeglasses. My job prohibited me from saying anything about it.
I could go on and on. After twenty years, I can say I've pretty much seen it all. Needless to say, once I was unemployed, the first thought that came to mind was that I didn't ever have to be nice to nasty professionals or overly demanding parents again. I could finally get off the fence.
And now you know the rest of the story. Wait, that was Paul Harvey's line, and it came at the end of the story, not in the first chapter. The real rest of the story is that I'm now able to share my experiences and thoughts with no restrictions. The articles I've written over the years are all through this book. They are not in chronological order, and they are not all about my kids. Some were written for a general audience. It's about experiences we may share. You may not always agree with me, and that's okay. We are all different, and our experiences define who we are. Just keep an open mind.CHAPTER 2
You Get What You Got
Sometimes life doesn't always give you what you want. Sometimes life gives you exactly what you didn't want. That's the way it seemed to me. You will see some basic statistics on my two girls below.
Kimberly sue, born: June 18, 1985 Birth weight: Three pounds
She was in foster care from birth until November 1986. When we adopted Kim at sixteen and a half months, she didn't walk, talk, or hold her own bottle. My husband and I had tried to have a child of our own for many years and finally decided to adopt. Kim was the first child we actually saw, and it was love at first sight. She progressed a great deal after she came to live with us, but it was soon evident that she was a wild child with some pretty severe behaviors. She threw tantrums, ate glass, destroyed everything of sentimental value I owned, refused to be potty trained, and ran off every chance she got.
Kimberly received early intervention services (services for children birth to three years of age with developmental delays or disabilities) until she was three years old. She attended preschool at the local board of developmental disabilities in our county until she was five and a half years old. We then moved her to the local school district, where she was in kindergarten for a year and a half. Kim's first grade year was spent in a self-contained classroom. When she began second grade, inclusion was the thing, and she was one of the first children with delays to be part of a regular class. This has continued over the years, with all involved learning how to best serve her.
Over the years, Kim has had several diagnoses: attention deficit disorder, attention deficit disorder with hyperactivity, mental retardation, and finally autism. It wasn't until we received the diagnosis of autism that we were truly able to help Kim.
Today, she is a fairly successful young lady of twenty-eight with a much better future than any of us could have imagined all those years ago.
It's only been in the past few years, after connecting with two of Kim's biological siblings, that we found out her biological mother had a type of schizophrenia and also used crack cocaine. Kim may actually be a fetal alcohol kid, but we've always treated her and have gotten services based on the autism diagnosis. That changes her diagnosis in one sense but really doesn't affect any treatment or intervention.
Krystal Leighann, born: June 18, 1987 Birth weight: One pound, two ounces
Krystal was conceived soon after we adopted Kimberly. She didn't want to miss Kim's second birthday, so she was born about three months early on Kimberly's birthday. She spent the first six months of her life in Children's Hospital in Columbus, Ohio. Krystal had to have a patent ductus operation to close a valve that normally closes in full-term pregnancies, a ventricular shunt to keep fluid from accumulating in her head, cryotherapy to try to halt the progress of her retinas detaching, and a cricoid split to enlarge her airway (it was constricted due to the accumulation of scar tissue in her airway caused by the ventilator that had kept her alive). She finally came home in December 1987 with an apnea monitor, oxygen, and assorted medicines. She was also blind. As if all this weren't enough for one little girl, she developed a seizure disorder right after she turned three. Krystal also received early intervention services and preschool services for children with disabilities. She attended kindergarten three days a week at a special school for visually impaired children about twenty-five miles from us. She attended her home school on the other two days. When she started first grade, it was at her home school. She stayed there through the sixth grade. At that point, it was her decision to transfer to the Ohio State School for the Blind.
Krystal is now twenty-six years old. She has taken ballet and gymnastics, was the treasurer of her 4-H club, has won several art awards, has many trophies from showing her llama, and is a very bright young lady. There are also several areas she has problems with, but we manage.CHAPTER 3
In the Beginning
In the beginning of my journey, I was a mess. I didn't look like it because I'm a firm believer in the Gerry and the Pacemakers philosophy of never letting the sun catch you crying. If you know what I'm talking about, then you're getting awfully close to being older than dirt. If you are clueless as to who this Gerry might be, he's a member of an old English band, and the song is one you might want to listen to.
When Krystal was born, no one was prepared. My water broke, and we were off to the hospital. I was only twenty-three and a half weeks along. I had no idea what was happening. They put me in a back room on the maternity ward and wrapped a monitor around my belly. They told me my water had broken, but that sometimes it seals back up. In the meantime, I was to just lie quietly. Something was mentioned about giving me an injection that would help the baby's lungs develop, but someone said I wasn't far enough along for it to help because the baby would never survive.
I was there for what seemed like hours. Every so often, a nurse would poke her head in and look at the readings on the machine and leave. My back was killing me. It was dark, and I was alone, so I cried.
Finally, an older nurse came in, asked how I was doing, read the machine monitor, and did some poking around. "Why, honey, you're in labor! The baby is just too small to register on the monitor."
Then things began to happen! They wheeled me into the delivery room, called my doctor (who happened to be on vacation), and waited for the OB/GYN on call to come. Krystal came before him, and the nurse said, "Oh my God! She's breathing!" And things got even more hectic.
Enter Dr. John Schowinsky. My hero! He was able to intubate her, and they whisked her away. I could continue with this story, but at this point, I'm going to insert the very first story I ever wrote.
Who Am I? Where Am I?
Where am I? What are all these tubes for? Who are all these people? The machines! Am I someplace in the future? Is this what happens when you eat anchovy pizza before bed?
Wait. I remember. Oh my God! Where's my baby? Wait, here comes someone. Hey, lady! Can you tell me what's going on? Is this a dream? No, not a shot. I need some answers!
Wow! What a terrible dream! I'm in a strange place, and there were all these machines and tubes. I'm almost afraid to open my eyes. What if I'm still there? Hey, it must not have been a dream because all that stuff is still here. Maybe I've turned into Alice, and I'm in Wonderland. More like Horrorland, if you ask me. But I'm beginning to remember. I thought the baby had given my kidneys a real healthy kick, but they told me it was my water breaking. But I just started my Lamaze classes, so that can't be.
They put me in that back room. My back was killing me. They had that belt thingamajig around my stomach. Wasn't it supposed to tell them I was in labor? Good thing that older nurse came back and was able to tell them I really was in labor. Who knows what would have happened. But wait. What did happen? The delivery room. I remember now. But where's the baby? I saw her. She was moving. Where did they take her?
Oh good. Here comes my husband. He'll tell me what happened. Wait. What's that he's saying? Just over a pound? They're coming to get her? Who's coming to get her? I want to see her! Leave me alone. I don't like what you're saying. My baby will live. She has to! What? I'll get to see her before they come? Can I hold her? No!? Oh, she has to stay in the, what was it you called it? The incubator. Yes, that's it. Well, okay, if she has to. Here they come with her now. Dear Lord, I've seen newborn puppies bigger than her. What are all those tubes and wires for? She looks so uncomfortable. Don't all those things hurt her?
Okay. I know they're here to take her. Can I go too? Tomorrow? But I want to go with her now! So what if I leave anyway? That's my baby! Oh, all right. I'll go back to bed, but I will leave tomorrow. You have my word on that. At least leave that picture with me.
Please, Mom, Dad, Gary, go home. I'm tired. I want to sleep. No, I'll be okay. Please, just leave. Yes, I want to talk to a doctor. I need some answers.
What's he saying? Intubated? What? The next forty-eight hours are what? Oh, crucial. Yes, I understand that word. Does she stand a chance, Doctor? Is she suffering? Oh, they don't feel pain. (Does he think I'm an idiot?) She can't cry? Oh, because of the oxygen tube. Yes, I understand. She looked like she was crying, though. Twenty percent chance. Yes, I understand percentages. But it gets better with each hour? She did breathe on her own for a while, though, didn't she? Yes, I understand that her lungs aren't completely developed yet. Hey, I'll pray, okay? Thanks for answering my questions, Doctor. Yes, I'll be okay. Tired now.
Dear God, please, please, please. I'm begging you. Don't let her die. Please let her live.
She's still alive? Hey, I knew she could do it. Why, you should have felt how hard she could kick! What? No, I don't want a shot to dry up my milk. Yes, I'm sure. Hey, lady, I'm sure, so leave with that needle. I want to go see my baby. What? A name? We hadn't decided on one yet. Wait, let me call my husband. He doesn't care, so I'll call her Krystal. Krystal Leighann. No, it's L-e-i-g-h-a-n-n. Yes, I'm sure. I don't care how other people spell it. And Krystal is spelled with a K and an a-l. No, I don't want that shot!
Later, Driving to the Hospital
What? I don't want to talk about where we'll bury her because she's not going to die! Okay, have it your way. Make your plans, but don't count on me and Krystal being there for the funeral, because that little girl is going to live. I'm not upset. Don't worry. I'll be all right. Is that all the faster you can drive?
At the NICU
God, my hands are shaking. She's in that room? Sure, I'll wash my hands and put that gown on. Time to go in. Calm down, walk slowly. What a horrible place! I'm in a time warp. This can't be happening to me. Where is she? Way back in that corner? Breathe, breathe deeply. Stay calm. All the other babies look so much bigger! She doesn't even have enough meat on her for there to be a crack in her little butt. It's perfectly flat. God, please help this little girl. She's made it this long. Please help her. Please.
What? Apnea? Levels? Monitor? Why can't I understand these people? Why won't they look at me? If I just don't cry and try to look like I'm in control, maybe they'll tell me more. I wish my hands would stop shaking. I wish I could wake up. This really can't be happening to me. I know, if I see the white rabbit, I'll know it's a dream. Just white uniforms. No white rabbit. It must be real. How am I supposed to act? Did they teach us this in school? Maybe they did, and I just can't remember.
Excerpted from OFF THE FENCE by Pat Linkhorn. Copyright © 2013 Pat Linkhorn. Excerpted by permission of iUniverse LLC.
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 One Off the Fence at Last, 1,
Chapter Two You Get What You Got, 5,
Chapter Three In the Beginning, 8,
Chapter Four Coping, 14,
Chapter Five How the Toilet Paper Rolls, 17,
Chapter Six Who We Are, 20,
Chapter Seven Agencies, Committees, Laws, People, and More, 28,
Chapter Eight Living with Autism, 37,
Chapter Nine For Professionals, 51,
Chapter Ten For Parents, 64,
Chapter Eleven What Is Important, 74,
Chapter Twelve Telling Your Story, 78,
Chapter Thirteen People Will Be People, 89,
Chapter Fourteen Adult Services, 98,
Chapter Fifteen A Snapshot of Kim, 101,
Chapter Sixteen A Snapshot of Krystal, 107,
Chapter Seventeen In Conclusion, 113,