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Summer 2004 Table of Contents
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The Simple Things Are Never Really Simple…

By Shawna Mann, Parent, Mabank, TX

Abstract: A mother discusses her sons' journey toward independence, and the importance of teams working together to support a child, and support one another as well.

Key Words: visually impaired, family, expanded core curriculum, independence, teams, advocacy

I stood next to the salad bar at the Golden Corral tonight and watched my son, Ben, maneuver his way back to our table. I'm sure those around me thought I was crazy as the tears streamed uncontrollably down my cheeks. He cautiously counted tables as he held his plate tightly in both hands. His feet took such careful steps that no one around him could have guessed he is visually impaired. I held my breath as he stopped next to the row that held our table. I watched him listen carefully as he slowly scanned the row. There was nothing in his sight to distinguish our table from the other four. He stood for a minute and then softly called "Mom?"

I wiped my eyes and stepped toward him. He recognized me immediately. "It's the second one," I told him softly. His face beamed as he moved to our table and took his seat. This was a victory. He had safely and successfully made his way across a crowded restaurant carrying his own plate. It's a simple thing, really. Kids his age do it all the time. So why was I crying?

We have three beautiful children. Our daughter, Kaelin, is nine, Ben is seven, and our youngest son, Logan, is five. Ben and Logan are affected with x-linked juvenile retinoschisis. They are both considered legally blind. One of the greatest things I have learned from my children is there are no "simple things".

Ben's unescorted trek across the restaurant was the culmination of five years of hard work. We have always pushed the boys to be independent. We preach self advocacy on a daily basis. As parents, that is our job. However, our boys would not be where they are today without the collaboration of some incredible teachers, paraprofessionals, and administrators.

In the beginning, there were Linda Ashmore and Tressie Schindler. Ben was three, Logan was one. They not only taught the boys, they taught the rest of the family as well. Kaelin began learning Braille and the art of being a sighted guide at the tender age of five. Words of encouragement and reassurances that this was "normal" were plentiful. Ben received services during his PPCD class. Logan received services at home. Both teachers made every minute count. They collaborated with each other and both of them reinforced the other's goals for each lesson.

Ms. Ashmore reinforced Ms. Schindler's O&M lessons by allowing Ben to navigate the maze of halls through the school before each Braille lesson. Ben also received OT for fine motor skills and speech. Both teachers planned activities into their lessons that reinforced what the OT and speech therapist were doing as well.

When Logan was two, Ms. Schindler began taking him on O&M field trips once a month. One of his favorite places was the local grocery store. The week before the trip, Ms. Ashmore provided enlarged pictures of various fruits and vegetables with their names in both large print and Braille. Then Ms. Schindler brought a school bus to the house in order to take us. Once there, Logan was asked to locate and match items to the pictures. We still play this "game" each time I go shopping. He is probably the only five year old who can recite the layout of the produce section.

Unfortunately, after two years, my husband's job changed and we moved to Region X. However, we were once again blessed when Ms. Sandra Greenman came into our lives. Logan started PPCD. Ben started kindergarten. She collaborated with both classroom teachers to ensure that they received as much from each day as possible.

Logan became such a powerful self advocate that we had to ask to him to tone it down. He spoke up very loudly whenever there was something he could not see. She worked with us, the PPCD teacher, and Logan to explain the importance of self advocacy as well as the polite way to handle it.

Ben also thrived under her instruction. His Braille took off and he learned to navigate the new school quickly. She knew just how hard to push without frustrating him. When he was worried that the CCTV made him "weird," she collaborated with the classroom teacher to make it "cool." In March of his first grade year, however, something odd began to occur. I began getting daily reports from her that Ben was excessively tired. I backed up his bedtime and didn't think anything of it. She called again two weeks later to report that he was still fatigued. I voiced a concern that he was using this as an excuse to get out of work. She didn't agree and encouraged me to take him for a checkup. Ben was severely anemic. The guilt I felt was overwhelming, but it didn't last long. She quickly offered support and ideas for helping him get through it without falling too far behind.

Once again, we find ourselves starting anew in yet another district. We have been blessed with a whole new group of professionals. So far, everyone has been wonderful. Both boys (and both parents) have made the transition without any major issues. I credit this to the expertise of each and every one of their current and former teachers.

I've heard the saying "it takes a village to raise a child." When it comes to special needs children, it takes a team. Each and every member of the team is equally important. If any part of that team breaks down, huge gaps develop in the child's development. It is also important for each of the team members to support each other. The family must support the TVI and O&M. In turn, they must support the family. As paraprofessionals and classroom teachers are added, they must also be welcomed as part of the team. Most importantly, they must all support the child.

Horror stories in special education are abundant. As an advocate for parents, I have heard many of them. One of the most common complaints is a complete breakdown in support of the other team members. Teachers become focused on their issues and don't consider what the family is dealing with and vice versa. As parents, we must advocate for our children. However, we must also keep an open mind in listening to other team members' ideas and opinions. It's easy to remember to voice our dissatisfaction, but it is vital that we remember to praise our teachers. Teachers must remember to give family members an occasional pat on the back as well.

We may all come from different areas of expertise, but our goals are the same. We want to raise a well adjusted, well educated, confident young adult. With the support of some incredible teachers, I know that navigating crowded restaurants will get easier for Ben. I know that Logan will not have a problem shopping for his own groceries. I know that both boys will grow to be happy, independent adults. I also know that as parents, we will survive.

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Last Revision: September 1, 2010