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NCHPAD - Building Healthy Inclusive Communities

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Making the Most of School Services and Relationships in the Early Years


We are fortunate to have been lifelong residents of Michigan, because special education services have been available since 1972 for those certified as eligible from age newborn to 26 years of age. This is important because it gave us an early start on helping Nick and extended the period of support. This provided us with greater assurance that he would have the skills required to meet established goals. However, that did not mean that school services were handed to us on a silver platter. Many an Individual Education Planning Committee (IEPC) meeting was difficult and tense, with me, and sometimes an advocate, working to obtain all the services that Nick was entitled to. In addition, I learned fairly early on not to just accept the "plan" that the school personnel had decided on for Nick. For young parents reading this, or for teens advocating for their own services, let me give you an example of a strategy that I used to negotiate services.

As most of us know, the school-based special education planning meeting, in my state referred to as Epics, is required to develop and approve an Individualized Educational Plan (IEP) for the student which reflects maximizing services and doing so in the least restrictive environment. Parents/guardians and students must be invited to the meeting and encouraged to attend. In the early years, I would simply receive a letter informing me that the meeting was scheduled for a certain time, without anyone checking with us first about our availability. So I would scramble around and frantically try to adjust my schedule to be there. Most often I was able to do this, but once it was impossible for me to meet at the time the school had designated. During that meeting, which I missed, Nick's speech therapy services were cut in half.

What ensued was then a series of meetings that I struggled to get scheduled and for which I needed to seek help from an independent speech and language pathologist and my pediatrician to advocate for reinstatement of services to the former level. From the time of that experience, which occurred when Nick was about 5 or 6 years old, I would never allow an IEPC to occur without myself or Nick's dad, or preferably both of us present. It didn't take long for school personnel to catch on that to make things go more smoothly for them, they needed to check with us about our schedules first before scheduling others for the IEPC. As a parent or person receiving the services, you have the right to have the school personnel adjust to your schedule within reason.

As soon as Nick was old enough, I insisted that he also be included in the IEPC meeting. I felt that it was important that he be present so that he would be aware that we were talking about his school program and we could hear from him, to the level that he could articulate it, what he wanted to learn at school - and that he heard from all of us what we expected of him in terms of his effort. As a mother of a child with special needs, one of the most difficult things for me to get through to younger parents is that if you don't expect much from your kids, you won't get much. All kids need structure, consistency, expectations, discipline, and to be pushed sometimes to do better and try hard, and kids with special needs are no exception.

The final thing related to the IEPCs was that I would never accept pre-written plans. That is, I did not expect to walk into an IEPC and see the plan laid out in front of me to just read and sign. If it was a planning meeting, then we needed to plan together. As I grew older, more knowledgeable about services, and more secure in myself, I would come to the IEPC with Nick's "vision" statement and ask each person present how they were going to contribute to it in the upcoming year. I would challenge them to think outside the normal routine to see how we could move Nick forward in his skill development. Sometimes we would have to meet more than once because someone might present an idea that needed to be explored and then we would have to reconvene and make a decision, such as cross-district programming.

I also expected a practical approach to his education. So, although it took a number of years, Nick needed to learn about money and how to manage it. He needed to know the difference between a one-dollar and a five-dollar bill and how to count and make change. That is what comprised a number of years of his math classes. He was never going to learn multiplication tables or algebra, so I would preach to the teachers not to waste his and their time focusing on that, but rather teach him life skills.

Surely I am sounding like I was an obnoxious and demanding parent. Well, not really, and I worked hard to counter my demands with my offers of help. I did so in some very simple ways. I would help out as a room mother or go on field trips with his class. I would always be willing to make something for the school bake sale. I would volunteer to do health screenings because I am a pediatric nurse and could offer that support. So, essentially, I became a partner with the school and a valued asset to the principal and teachers while still demanding the most they could give to my child, not the least.

As Nick grew, some of my challenges and strategies related to the school environment needed to change. Those will be discussed a bit later. First, however, let's talk about the importance of finding mentors and support.


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