The Humbling Honor of Raising a Child With Special Needs

Being the parent of a child with special needs is a very humbling honor. These children have so much to offer this world and have the potential to do amazing things. In many ways, they have an advantage in seeing life through different eyes and will be stronger individuals as a result. While there are many challenges and emotional hurdles to overcome, these kids can thrive with a strong family unit.

Raising a child is difficult in its own right, especially in the world we live in today. But for parents of special needs kids it involves advocating educational needs, facing social stigmas and finding the right medical or psychological treatment are all issues that consistently have to be monitored.

This can leave us feeling overwhelmed, inadequate and alone, but also very blessed. I live this truth, as I am a mother of a child with a physical abnormality.

When my son Matthew was born, I noticed a very slight laziness in his left eye, also called amblyopia. It was so mild that the attending pediatrician at the hospital said that the condition would correct itself in the coming weeks and that it was not necessary to see a specialist. I felt something was not right, so I followed my gut instinct and scheduled an appointment with a respected ophthalmologist in the area.

It was during his exam that we learned Matthew has a coloboma (or under development) of the optic nerve which affects his vision. It's unrelated to "lazy eye" and a fluke we made this discovery. Most children with this condition are afflicted in both eyes leaving them virtually blind, so he was considered fortunate that his right eye has perfect vision.

I was overwhelmed with questions and demanded answers. How did this happen? Was it something I did wrong during my pregnancy that caused this? What did this mean for my son? Can his condition be cured? Was he going to lose his eye? I felt helpless and angry that my son was dealt this card. I knew there would be difficulties ahead for him, so I chose to be as proactive and positive as I could. I engorged myself with knowledge about his condition and I followed medical journals regularly for insight on new options. This was not going to hold him back in life, and I was determined to instill this confidence in him. But let's face it, kids are cruel and surprisingly, so are some adults.

Three years later, my son lost full vision in his left eye due to a retinal detachment caused from the condition. There were several failed attempts to surgically reattach it. Over time, the eye clouded and suffered atrophy, greatly affecting the appearance of his eye. When Matthew was entering elementary school, it wouldn't be long before other kids noticed his physical differences. I explained to him that it was acceptable and understandable if people asked him questions on why he looks different.

I used the analogy that if a classmate came to school with a cast on their arm, he would ask what happened. Wanting to understand is a positive step. However, teasing and bullying is an entirely different issue and one that can have very negative effects on self esteem. When my child came home from school upset and feeling as if he didn't fit in, it ripped my heart out. All I can do is provide constant reassurance and encouragement and explain that people who behave that way have bigger issues than he does and it's their way of dealing with them.

It's important that special needs kids integrate into a normal social environment because it can have a tremendous impact on how a child views themselves. Highlight what they can do versus what their limitations are, This will help them gain the self confidence, a necessary tool to get them through difficult situations.

For parent, Trisha Wood of Tampa, raising two special needs children has guided her into a path she never expected. Her children's special needs are very different from each other. Her daughter Deanna, 13, was diagnosed with slow learning disability when she was in second grade. Her daughter has an average IQ despite her learning disability. With perseverance and support, she maintains average grades, but does have accommodations to help her out. Some of her subjects are read to her to help with comprehension and organization.

"She may never read Harry Potter, but she has a good foundation to be a wonderful woman and hopefully a college student," Wood said.

Wood's son, Alex, 11, was also diagnosed with slow learning disability. Wood explained that her son can become impulsive, anxious, paranoid and would get frustrated easily. He became verbally and physically aggressive when he tried to focus on something or when his schedule is changed. This makes it difficult for him to make friends and unable to be left alone with his siblings.Wood balances the needs of both of her children. After experiencing the affects of her children being labeled as different, Wood became a special education teacher.

Adrian Anderson of Gulfport has two children with physical special needs. Her oldest daughter,6-year-old  Taryn is hearing impaired and diagnosed with rheumatoid arthritis. She also suffers from migraines and has severe speech disorder called apraxia.  Anderson's youngest daughter, Rylan, 4, is also apraxic. Taryn attends a deaf and hard of hearing program incorporated into her school. Anderson insists on raising her girls as normal as possible and her positive and supportive attitude has paid off. Keeping her girls both active, they are both involved in swimming and karate several days a week, alongside their peers.

"In the beginning, I babied my oldest and realized that wouldn't help her at all. When Taryn turned three, I started to treat her like a normal child with no disabilities, and she soon started to act like one. I focus on all the things they do well and really praise them for it," Anderson said.

Melissa Michalk of Seminole, faced challenges finding the right educational and social environment for her child. Her 5-year-old son Andrew was officially diagnosed with pervasive developmental disorder, which categorizes him as moderately autistic. Andrew is completely non-verbal, but communicates via sign language and gestures. It was imperative to find the right school that would provide the special attention and accommodations that would allow him to strive with his peers. This year, he attended a private school in St. Petersburg that specializes in autism and other conditions. Andrew receives one-on-one behavioral therapy daily at school, and also attends speech and occupational therapy after school hours.

"He is blessed to be at a school that partners with a Christian school that allows Andrew to play, interact and learn skills along-side typical functioning peers. At this school, his therapists have been able to teach the typical children his age about Autism, and how to "play" with Andrew," Michalk said.

Michalk is slso the mother of a non-special needs child, 10-year-old Grace. She ensures that both of her children's needs are met.

My son Matthew is now 11-years-old and will be starting middle school next year. Currently, he wears a schleral shell full eye contact that cosmetically covers his eye abnormality, which has had a tremendous positive impact on how he feels about his physical appearance. I waited for him to inquire about options to help his appearance and only shared these with him when he was ready. I never wanted him to feel as if I was ashamed of how he looked. And for the most part, Matthew is comfortable with himself. There are many days he chooses not to wear it. He sits in the front row of his classroom to see better and he must take extra precautions to protect his healthy eye. His depth perception is slightly affected, but otherwise the world is Matthew's to explore. My son determination, creativity, and ability to face adversity amazes me.

I know I speak for other parents raising kids with special needs when I say I am so proud of my child.

Here are some resources for Tampa families with special needs children:

• Care.com
• Camps around Tampa for special needs children
• Central Florida Parent Center (Tampa)