Raising a Child with Special Needs
MY DAUGHTER, MY JULIANN
For three years now, I’ve driven passed this tree without giving it a second thought. Whenever I looked at it, I saw this tree in relation to the grove of other trees planted around it. This tree is healthy, a fruitful contributor within the society of trees. It produces oxygen and provides homes for wildlife. It’s also pretty to look at. In fact, based upon the condition of some of the other trees growing around it, this tree is a top performer.
Last winter, when its branches were bare and freezing in the cold, this tree caught my eye for the first time. Take a closer look.
The branches are gnarled, growing close to the ground. One even extends along the ground for several feet. This tree doesn’t have the physical form we’re used to seeing. It’s different. It’s unique, yet despite looking different, this tree performs the same tasks all trees were created to perform and its doing its job well.
This tree has a determination to survive! This is what drew me to it in the first place. Minus its spread of lovely leaves, I can see its struggle. I hear its story!
During the sapling stages of its life something bent this tree over, pressing it down. But it survived the pressure! It continued to grow, becoming stronger and stronger. Although its branches and trunk are bent severely close to the ground, it grew in size, until it was thick enough to hold children and adults desiring to explore and climb it. People who come to the park where this tree lives, utilize its shade, taking a break from the Texas heat. Sometimes pausing for a few minutes to eat a snack, as evidenced by the discarded, plastic cup seen in the picture. Frankly, this gnarled, odd looking tree seems to be everyone’s favorite because of its accessibility, the comfort it provides and its strength.
This tree reminds me of my daughter, my Juliann.
If you’re reading this article… I thank you! I’m also guessing that you are a probably a mom. Simply because I have been told by medical professionals that 99% of the children they see are supported only by their moms. But that was a few years ago, so, if you’re a dad, I thank you even more, for the reason stated above and ask that you not be offended if it seems like I’m only addressing women. I’m not. It’s only because my story is delivered from a woman’s perspective.
As I began writing about my life and motherhood, a sudden flood of memories laced with lessons I learned, began to inundate my brain. Lessons, that years ago I felt strong inclinations to share with other parents who might be facing similar circumstances. My children’s needs ranged from physically handicapped, to gifted, to extreme ADHD. My husband and I were also adoptive, foster parents, which opened our eyes to the effects of physical and emotional abuse in children and adults. In addition, I personally, have struggled with ADHD and Dyslexia.
My hope in this story is to offer as much encouragement as I can to other parents facing similar circumstances. To impress upon you that you are not alone in raising your special child! You are not alone in your emotions, your isolation and the immensity of you load!
Years ago, a counselor told me that feelings are just that—only feelings! They are neither good nor bad, it’s what you do with you’re your feelings (how you act upon them) that matters. In a nutshell, you are not a bad person or parent because of the way you feel. And if you’re just beginning your journey down this road called special needs and can’t see the light at the end of the tunnel… I’m here to tell you, that light is there!
When I was first struck with the realization my child had significant physical differences, I felt as if I had crossed an invisible line, into an unknown world that was extremely frightening. No one else in my life was raising a child with special needs. I quickly learned that my friends and family members couldn’t begin to comprehend what I was facing. Overwhelmed, I felt as if I was standing at the bottom of a huge mountain staring up at the top. I knew I had to climb to the summit but seriously questioned my abilities to so. Two, conflicting emotions tormented me; loving my baby with all of my mommy’s heart, versus absolutely NOT wanting to deal with a handicapped child and a future that was unknown. I wished the years away, wanting to be instantly transported to the summit. That place where all the questions and mysteries were revealed.
My journey began with a seriously complicated pregnancy, resulting in a lengthy hospitalization and the two-month, premature delivery of my daughter, Juliann. I already had two little boys at home, Chris and Andy, so I knew something was very wrong when Juli’s physical development was severely delayed. A few months after she was born the diagnosis came—cerebral palsy. My head swam the moment I heard the words. In an instant I was propelled, for the rest of my life, into this world labeled handicapped. There was no way to escape, no way to determine the extent of Juli’s disability nor whether or not her cognitive skills were affected. She was a little bundle of mystery and the love of my heart. Still, I did not want to raise a physically handicapped child! I can say that now but was deeply ashamed of this truth for several decades.
My daughter’s physical differences revealed to me just how prejudice a person I really was. As a child, growing up in the latter years of segregation I never understood social prejudice. I was also submerged in the arts, my family a collection of professional artists, musicians, my mom a singer and actor, dad a television and radio broadcaster. My artistic family taught me to not to judge someone else’s lifestyle. But the moment the word handicapped was attached to my life! Now that was a different story!
Accepting my new state of being did not happen overnight. It was a process of multiple steps that continued throughout Juliann’s childhood and to some extent still take place today. The beginning step was the hardest regarding acceptance that Juli was different. My submission began while holding her tiny body close, kissing her infant hands, singing her songs, realizing I would do anything to keep my baby safe. Her needs took dominance over mine, and even though I didn’t want to manage cerebral palsy, I knew I would do everything I had to for my daughter.
Immediately following Juliann’s diagnosis, she had further testing to give us a better understanding of her specific needs. These tests became my second step. For the next twenty years Juli and I would have multiple doctor appointments, tests, surgery, equipment purchases such as form adjusting highchairs, walkers, wheelchairs and standers to stretch her hamstring muscles, as well as weekly occupational and physical therapy sessions. Just before she turned two, Juli had to wear glasses and an eye patch. It broke my heart, making her do this. Not just because she hated them, but because I hated covering up her adorable face. However, this treatment turned out to be excellent! By the time Juli was in the fourth grade she didn’t need to wear glasses at all.
Throughout most of her childhood, Juli wore braces that wrapped around her feet supporting her legs, running up to her knees. As she grew we had to have new ones made. When she turned twelve I supported her decision not to wear them anymore. At five years old she underwent a Dorsal Rhizotomy surgery, resulting in over half the nerves in her lower body being severed. Complications resulted from that, leaving me riddled with guilt wondering if I had made the right decision, despite an extensive team of physicians at Dallas Medical Center telling me this was her best option. Next came the purchase of her first, motorized wheelchair, which meant purchasing a van with a wheelchair lift.
With each new step regarding Juliann’s development and physical needs, I went through a process or cycle of emotions. Here’s an example of what I mean, using the purchase of our first van with a wheelchair lift. Let me start by saying, that for some reason buying that van was for me, the straw that broke the camel’s back. I hated it! It was huge and driving it frightened me. In fact, Chris named it Europe, because of its size. But the van was a necessary piece of equipment need for our family, for Juli.
Here’s the example of the process I went through:
1. Realizing that the van is necessary
2. Angry I have to buy the van
3. Buying the van
4. Angry I have to learn how to drive the van
5. Mastering my driving skills (although Juli and her brothers had to endure bumps over curbs and the denting of quite a few handicapped signs as I parked the van.
Whether it was the need for glasses, braces, surgery, medications, walkers, ect., I went through this cycle. Sometimes several times over a span of several years, before finally reaching acceptance. I’ve learned that this cycle is similar to the cycle a person experiences when dealing with grief, Denial—Isolation—Anger—Depression—Acceptance.
Today, almost thirty-three years later, Juliann’s childhood is over. It has been a wonderful and rich journey full of joy. Yes, we faced great trials along the way. Yes, the road was rocky and riddled with potholes. Yes, it could be frightening! At one point it brought me to my knees. I was so broken from the multiple issues I was facing as a mom, drained and exhausted. That’s when I met Jesus face-to-face and He became my sustaining power.
When I look back upon my Juliann’s upbringing and see so many things I would do differently. I have to remind myself, that, at the time… I did the very best I could, with the abilities I was given and the tools that I possessed. That’s all any of us can do really, our best.
As parents, especially women, we need to remember to take care of ourselves, the same way we take care of our children! A little fact that gets brushed under the carpet while juggling families, work and all the other things we do in our lives. I learned, that I could not give to my family what I myself didn’t have to give. In other words, if I didn’t have patience when handling my kids, my kids in turn were impatient.
In Texas, the foster care system understands the importance of this need for rest. So much so, that they pay for parents to take short, overnight respites away from their house and children. I understand that leaving for the night isn’t an option for some people, finances and childcare being the main reasons. Still, everyone needs a break, especially if your raising children with special needs. Find the time and make it a priority. Search the internet for creative ideas. Most importantly, learn to discipline yourself concerning these times! Meaning don’t talk about or mull over in your mind, your children’s issues. This time is for you! Remember, even Jesus sought moments of solitude and rest.
When Juli was in the sixth grade and left the nurturing environment of our elementary school, the social implications became so negative I pulled her out of public school to homeschool. This was one of the hardest but most rewarding decisions I ever made. Particularly when her brothers decided to homeschool as well. When it was time for Juli to enter the ninth grade, she told me she was ready to try public school again. During her high school years, we utilized both inclusion (mainstreaming into regular classrooms) and resource (a classroom designed to teach alternative learning methods to children who have learning differences). Juli made good friends, some she still has contact with. There were still some pretty grave social issues that come our way, such as the boy who asked her to the prom and at the last minute told her, he didn’t want to be seen with her in public! Her brother Chris rented a tuxedo and proudly took her anyway!
Despite the social implications, Juli maintained the Honor Roll and Dean’s List all four years of her high school career!
During her junior year, I began to slowly step back and let her take the lead regarding her educational needs. She was introduced to the art of Graphic Design and discovered this was something she not only was good at but enjoyed. One of the main appeals being the fact that her art held footing on its own. Meaning no one could look at her art and could see that she used a wheelchair. In her senior year, she began working on her college Associate’s Degree for Graphic Design. Spending half a day at high school, the other half at the college. This was truly her first step into adulthood. I knew she was scared to death and helped her with the transition, spending time with her on campus. Together we learned how to maneuver around the school. Either my husband or I was always waiting for her in the van when her classes were over. We had to transport her to and from the campus ourselves because of her wheelchair.
After Juli graduated with her Associate’s Degree (again, maintaining the Dean’s List and High Honor Society) we moved her to Dallas where she lived on her own for the first time. While pursuing her Bachelor of Arts, again in Graphic Design, with the Art Institute in Dallas, she found a job at a mall across the street from the school. Both school and work were centrally located by a rail station which was her means of transportation.
Suddenly, Juli’s physical safety became our main concern. Twice she was hit by a car crossing the street from the Art Institute to get to the train station. Once, on her way to school, a homeless man physically attached her, threatening her life. The police apprehended him, which is a story in itself. We’ve had several instances where her wheelchair broke down stranding her on the streets of Dallas at night or early morning (still happens). These episodes propel my husband out the door to drive to her assistance. And, just encase you’re wondering, in all of the above instances, Juli came out unharmed.
I’ve taught her to immediately call 911 if she finds herself in danger, since Dallas is now over an hour away from Fort Worth, where we now live. She does, but always calls us too. We’ll stay on the phone with her until help arrives. We’ll also stay on the phone if someone creepy is at the train station and she’s all alone at night. Her struggles are not over, they have only matured. I find the next step is taking her to the level in her independence, teaching her to lean more on herself and less on us. She’s getting there. We all are.
About three years ago we moved to Fort Worth, Juli too! She has a sweet little loft in the heart of the city. We adapted it for her needs. She still travels to Dallas everyday for work, with Bank of America. Her salary sustains her living and she has excellent health benefits. Although she wasn’t hired as a Graphic Artist, the management has taken a sincere interest in her work. They’ve also taken an interest in her. She’s learning to maneuver around a corporate setting and adjusting well. Reaping advice from her Dad who climbed the corporate ladder from the bottom to the very top with the company that is now Verizon. She is happy and healthy and becoming more independent every day. She is also my closest friend and confident.
When I look at my daughter I see an incredible woman, who has overcome more obstacles than most people could possibly imagine. She’s a tiny little thing, very petite, yet a monument in my eyes. She’s a living definition of Courage. Someone with the ability to hold her head high and persevere, despite a world that’s watching her because she’s different. Throughout her life she’s demonstrated the strength to face, not only her fears, but dangers and pain. She is also an advocate for others with special needs. An attribute that became evident even when she was a little girl in elementary school. The other SP kids were always drawn to her and because she is pretty, falling in love. She is like that tree, something beautiful to admire, full of strength and determination. She is my greatest treasure, my closest friend,my daughter, my dearest Juliann.