During my time in Missouri as an advocate for individuals and families of a child with a disability I was fortunate to work with a variety of school systems during the IEP (Individualized Educational Program) process. I worked as an advocate with the family and child attending IEP meetings, working together with the school updating plans, writing new plans, working on transitional services, and a host of additional processes pertinent to each individual child. I learned quickly that no two school systems were the same, as were no two educators. My biggest struggles came in a small community in Northeastern Missouri. Families were having a difficult time communicating effectively with school administration and felt that the needs of their child were not being met. Being new and not quite knowing the lay of the land, I decided to get to know these administrators and discover just how they worked.

After observing several meetings both IEP and otherwise it became clear that there was a feeling of defensiveness that was felt of both sides. Once this divisiveness entered into a meeting, well that pretty much set the tone, and not too much was accomplished. I decided to start prepping families before meetings, not just on the how to but on the how to attitude. I really began to see that it was all how you came to the table. If you came to the table believing that we are all going to get along and get something great accomplished here for the most important person in the world…MY CHILD…then that would happen. However, if you showed up on the defense, ready for a fight, well, a fight is what you can expect. My Granny used to tell me “You draw more flies with honey than vinegar.” That was never quite as true as in an IEP meeting.

In meetings the group working together, writing the IEP is called the IEP team. Families began to look at the team as just that, a team. As in the body of Christ we are all members of the same team, working together for a greater good. Each player serving a unique purpose, each purpose needed in order for the body to fully function in a healthy way to best serve the Lord. Coming together and respecting one another’s ideas and skills in the process of creating the IEP as well as carrying out the services as indicated in the IEP became a part of the bigger picture for this community. It was amazing as an advocate to observe communication barriers dissolve and new working relationships develop. Now mind you this did not happen overnight. I was a part of advocating for families within this school system for over seven years, however within that time children were served in a new way, and families who had previously been dissatisfied with services were leaving meetings with a smile, and were actually remaining pleased with services throughout the school year.

In looking at the IEP process itself it is important to recognize that while each school system works differently there is a core set of protocol established by the Federal Government to ensure that each child receives a quality education. The IEP enables educators, administrative staff, all ancillary services, and the students family to work together to provide the best possible outcomes for the child. The IEP process is driven by the Individuals with Disabilities Education Act (IDEA), however, it is important to note that each state and local municipality may include additional information within their IEP document which explains why documents may look different within different school systems.

In order to be eligible for an IEP the child must first be identified, evaluated, and eligibility must be determined. Once the child is found to be eligible for services an IEP meeting is the scheduled. As parents or guardians of a child with a disability it is important to recognize your right to ensure that the time of the meeting is appropriate for you as well as anyone that you wish to invite. You may invite a trusted family friend, an advocate, or medical staff that you have found to be supportive to both you and your child. It is important as parents to remember that you are your child’s best advocate. From the onset you should maintain a ledger of all communication with school staff either by phone or any conversation you may have had on school premises. Keep a log of dates and keep copies of all written communication with school staff. This is supportive in assisting you in remembering all of the services that your child should be receiving as well as assisting you if later there is a grievance (which hopefully there will not be).

After the IEP meeting is scheduled the meeting is held and the IEP is written. The current performance of the child is discussed, annual goals of the child are determined as are the special education and related services to be received. Determination will be made regarding the amount of time the child will spend in the regular classroom. Additionally the child’s part in state in district tests will be determined as well as dates and places. As your child gets older one of the most significant discussions that will take place in the IEP process is transition services. This takes place at age 14 or younger. At the age of 16 needed transition services will begin. Within the IEP there will be discussion regarding the age of majority. How progress will be measured and reported will also be covered within the IEP process. Once the IEP is written the services will be provided to the student. Progress is measured and reported to the parents. The IEP will be reviewed on an annual basis unless there is a request made by the parents or guardians to review the IEP at another time. Every three years the child will be re-evaluated.

If you do not agree with the IEP attempt to work with the school in order to reach an agreement. If this is not possible it will then be important to utilize mediation. If mediation does not support the family in achieving the needed results it will be important to begin what is called “due process.” Mediation must be made available to the family during the time of due process. Additionally a family may file a complaint with the State Education Agency (SEA) if they believe that the rights as stated under the IDEA were violated. The SEA has 60 calendar days to resolve the complaint, unless there are special circumstances.

Remember that the IEP is the cornerstone of the educational process. Recognizing the strengths of your child as you work through the process enables a quality plan, promoting a positive attitude among team members. Focusing on teamwork and quality communication enables team members to listen to one another and respect one another. You are there to support your child in receiving the best education possible. Come to the meeting with a Christ-centered attitude. When educators see positive parents willing to work together, it can make all the difference.

Continuing to look at how to work within the schools and making the IEP process work for you, I will share a technique called mapping with everyone in my next installment. Mapping enables parents and students to look at where they want to be at the end of their education and essentially work backwards from there in an IEP process, ensuring that plans include all of the tools to support students in achieving their dreams. I look forward to sharing this with all of you next time.

U.S. Department of Education. (2007). My child’s special needs: A guide to the Individualized Educational Program. Retrieved July 17th, 2008, from http://www.ed.gov/parents/needs/speced/iepguide/index.html.

Heidi E. Johnson M.S.

We all have that first memory of when we were a youngster. In remembering mine, I remember being four years old and hanging out with my dad at his friend’s house. We had just stopped at the store, on the way to his friend’s house, and he bought this gigantic balloon for me, so I’d have something to do while he visited with his friend. It wasn’t even into the first 15 minutes of his visit that my balloon got away and sailed into the heavens. All I remember doing was crying and chasing after it. Seeing this, my dad called me back, and we hopped in the car and chased after that balloon everywhere. It actually turned out to be a really fun time. Although we never caught the balloon, I’ll never forget the time I spent with my father chasing it.

Like I said, we all have certain aspects of life that we remember. We have those that we regret but sometimes those we regret turn out to be the ones we learn from the most and the ones that help us understand how important our Heavenly Father is to us. Growing up, I found myself just loving sports and going outside to do a lot of different things. Playing baseball was the passion I had. I remember those spring days and that freshly cut grass outside, and I would get excited just knowing that baseball season was about to begin, and we’d be out there throwing and catching the ball and trying to crank out those home runs in Little League.

At this time, I really didn’t understand anything about religious reasoning, or even have a clue about what or who Jesus was. In my mind, churches were just places for people to be bored, or maybe go to a wedding. I never thought of them as places to worship a living God. That lack of knowledge leads you to think that the ways of the world are going to be your source to fill your needs and wants. This hit me when I became a teenager and started experimenting with alcohol. I started drinking when I was about 16 years old at a pretty regular rate. I thought the only way you could have fun was by going out partying every weekend and drinking until you couldn’t remember what happened. But even with that, I was very involved in sports at my school and during the summer.

When I finally graduated high school in 1989, I found myself without much going on in life I decided to join the Army National Guard as avionics mechanic, (communication and navigation repairmen of helicopters) and I really did love it. On top of everything else I found myself in the best shape of my life, and it really made me feel good about who I was and what I was about. I was still a heavy drinker on the weekends, in my mind that just made me a better and more fun person to be around. By the time I was 25 years old, I had a degree in electronics technology, a great job, playing ball and was loving life. I really thought it would never get any better than this. When you’re living the ways of the world you find yourself completely caught up in self-centeredness and will do anything to be able to please yourself. I will admit, I was one of these people. My life at this time was about what I could get out of it, and really didn’t mind who got hurt while doing it.

There was a day in September of 1996 that changed my life forever. It’s a beautiful Saturday night and was a beautiful Saturday night and I was enjoying myself having drinks at a wedding that I stood up in. I was all dressed up in my tuxedo, I was feeling no pain and it felt like nothing could ever get better than this. I’d had a little too much to drink but still thought I could drive home without a problem. As you’ll come to find out, I was a little off on my thinking. It was about two o’clock in the morning when I came to the on ramp to my house. Having slow reflexes at the time I made my turn too late and ended up hitting the gravel and rolling my Jeep. During the roll the roof collapsed and I ended up having a compound fracture of my right leg and dislocating the C4 vertebra in my neck. This crushed my spinal cord and left me unable to move anything below my neck. After spending a week in intensive care I’ll never forget the day the doctor came into my room and notified me that I was never going to be able to move anything below my neck again. All I could think about for a while after this was baseball.

During my time in rehab I acted like nothing was bothering me, but it was easy to see it was because I was refusing visits from my friends who wanted to come see me. It was just easier to tell them that everything was okay and to stay home and not worry. This attitude went on for about four to five years. Around April of 2001 things really seemed to have gotten out of control in my life. First of all, my grandpa had just had a stroke and heart attack, my dog had just died, and the girl I was dating had left me for one of my friends, all within a month. At this time, I had no clue where to turn, so I decided to try something new in my life and opened up a Bible and turned it straight to Proverbs. Verse 16:25 reads There is a way that seems right to a man, but in the end it leads to death. This verse helped me think so much. I really thought I was doing the right things in my life, but even five years after my accident I still hadn’t a clue.

I happened to find a flyer that was about a year old sitting in my drawer. It talked about a church here in Columbus called the Columbus Christian Fellowship. I’d never been to a church before so I thought I’d give it a shot. I ended up calling the pastor and setting up a meeting to come in that Sunday. Sunday came and I drove my wheelchair about 2 miles across town to check out this church. I was very pleasantly surprised that it was wheelchair accessible. The pastor and I talked for a little while, and then when the service came about I was intimidated but also moved and actually had a physical feeling of true comfort. Since I enjoyed the church so much the first time, I decided to keep going back. To this day I’m still part of that church. Now this is what the Heavenly Father can do for you. The pastor of the church at the time was Pastor Larry Campbell (if you’re not sure who Larry is, he is now a missionary for people with disabilities for Special Touch Ministry). One day, five months after I started attending church, I found myself sitting in the middle of the park crying (if you knew me, you would know that would be strange for me) and coming to grips with what I am. People may say or focus on my disability, but who I truly am is a child of God with an all loving, perfect God who loves me so much that he bled on a cross for me. Galatians 3:26 echoes this, for you are all children of God through faith in Jesus Christ. This verse is vital to me. Although I may have a physical shortcoming, if you read this verse there is one key word. That word is “all”, which tells us everybody NO MATTER THE SITUATION matter the situation can be a child of God.

I was able to overcome the looking upon myself with the world’s eyes and started to use the guidelines of the Bible for my life, finding myself no better or worse than even the greatest athletes in the world. Ever since finding Jesus my life has changed dramatically, both physically and spiritually. My God has blessed me and helps me see so much more clearly now. I’ve never been happier and have come to realize that although my disability can be hard sometimes, I’m so thankful for what my weakness has brought me. It’s been 12 years since my car accident and at this time I’ve recovered enough arm movement that I can drive. I am in the middle of getting my Masters degree and becoming licensed as a Christian counselor. I’m excited to start my new journey. So as you can see from the beginning of my story, which entailed chasing something that went into the heavens and realizing I would never catch it, I learned that when you have your Heavenly Father you will never lose Him.

Larry Sauter joins Dick Gruber and Jason Rhode on a recent episode of the Children’s Ministry Talk podcast to discuss the topic, "Ministry to Children with Disabilities." | email Larry Sauter | Ministry to Children with Disabilities Course | Jim Pierson’s book "Exceptional Teaching" | Special Touch Ministry

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As a parent or guardian of a child with a disability many times questions regarding availability of supports and resources accessible is of great concern. The following is designed in hopes that parents or guardians of a child with a disability may become empowered to become more knowledgeable advocates, utilizing practical skills rooted in a deep abiding faith in Jesus Christ.

Trusting in your own instincts and observations of your child is essential. You are the best advocate that your child will ever have. It is important to maintain a record of your observations in order to relay accurate information to those supporting your child and your child’s family. Additionally keep a log of the information provided to you by health care and service providers as this can help you to recall information and can support you in recognizing things that you may not fully understand in order that you may later ask questions if needed.

Ask for additional opinions, information, and advice when needed; after all, this is your child. It is essential that as a parent or guardian you have all of the information that you need in order to make the most informed decision. Additionally, if you are not satisfied with the health care or service providers assisting you, it is your right to make necessary adjustments. As someone within the field, it is far better to know sooner than later if a family has additional concerns or needs that are going unmet.

Supporting a child with a disability presents unique challenges. For this reason it is imperative to remain connected. The stress associated in raising any child can be difficult, however, having the opportunity to link with other parents, guardians, or adults with a similar disability can assist in not only helping you feel less isolated and encouraged, but may offer ideas and additional resources that professionals may not even be aware of. Who better than the network of self-advocates, parents, and guardians to provide mentorship, support, and a forum for the discussion of ideas and concerns? You may potentially become a mentor as well. When facing challenges sometimes it is in the giving back that so much can be received!

So the real question becomes, where can I turn for help? There are supports that can be received within each state through the Department of Health and Human Services, Department of Mental Health, First Steps programs, and other private agencies contracted with by various state agencies. Through these programs services such as respite care, personal care attendant, offsite day rehabilitation, counseling, even supports such as sibling workshops may be received. Through these agencies issues such as finding appropriate supports as well as funding supports can and will be addressed. Additionally it is important to recognize the role of the schools. Under federal guidelines schools are mandated to provide specific educational supports and inclusion through development of what is called an Individualized Educational Plan (IEP) or a 504 Plan depending upon the nature of the disability.

Remember that God will never give you more than you can handle. God will provide you the strength that you need to get through the difficult situations and will bring you joy and blessings in your child. Be sure to take the time to nurture and restore yourself spiritually, physically, and emotionally. Seek support in not only your biological family and in friends, but in the family of God. Know that God will provide quality people in your life who will care for you and your family.

Submitted by Heidi E. Johnson M.S.