IEP and Me.
In school, I’ve never had an IEP. I would be lying if I said I knew what an IEP was until last year. It wasn’t something that I ever needed. My brother on the other hand had a slight speech impediment when he was younger and received speech therapy in school. So he just might’ve had one. Nonetheless, I was unaware and left clueless.
IEP stands for Individualized Education Plan. The IEP is a plan or program developed to ensure that a child with a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services. To no surprise, given Mark’s Cerebral Palsy Diagnosis, he has an IEP.
This is such an incredible thing for him. First of all, I think it is important to mention that Mark will definitely be going to school in the Fall. He will start Pre-K at our local elementary school in the area. While in school, Mark will be paired with other children with some form of an IEP and a few older children with no IEP. This is to help Mark learn social skills, teamwork, and classroom etiquette from the older children. It also gives him the chance to meet and play with children his own age, with similar needs and create dynamic friendships that will hopefully last throughout their educational career.
The process of getting an IEP is no easy feat. In fact, it is daunting, hurtful, and overwhelming. It is more than talking to a teacher about what you think your child needs. It is more than just showing up and having someone tell you what your child needs. It is much more and it cuts much deeper than that. I want to first mention that every city, county, and state is different so please don’t take my experience as a blanket statement for someone who may live in Texas or Maine or any other state for that matter.
The first thing any parent must do when an IEP is mentioned is to take a deep breath. I cannot stress this enough. I use to think it involved accepting that my son had a disability or that something was “wrong”. I want to be very clear about this because I know someone will read this and will criticize me. After all, they will misinterpret my words. Mark has a condition called Cerebral Palsy. It is, by law, considered a disability. The American Disabilities Act defines disability as a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.
It all starts with coming to terms with the fact that Mark hasn’t caught up yet in one area or another. This can be because of several things. This doesn’t mean he will never catch up. This doesn’t mean there is no hope for him. This just means he needs a little extra help in one or more areas of his life at the moment. Guess what? That is okay too. In school, I know there were areas I would’ve probably benefited from an IEP. I am pretty sure I never fully caught up in math in school and as an adult, my social skills are REALLY lacking. Life should come with an IEP. The first 18 years of “learning” are for the birds. We need more than that.
When Mark had his evaluation to determine if he was eligible for the Pre-K program, I was nervous. I watched him play with the instructor (another Pre-K teacher). I listened as she gave him instructions to complete a task. I heard his giggles. I laughed as he kept bringing her one car after another until her hands were full. Meanwhile, I felt like I was being grilled with questions. It wasn’t a feeling. I was being asked a ton of questions. I was asked what Mark could do, how he does things, when he does things, and why he does things. I was asked questions about certain milestones, his medical history, his personality traits. I felt like I was writing a book about him. It was a lot of information to give- but to also receive.
About a week later, I sat down at this very computer with my headphones on. I listened to the Speech-Language Pathologist for the school board, the Pre-K teacher that did his evaluation, and a representative from the school district as they discussed Mark’s evaluation results. We went through everything. Every single pass. Every single fail. With every box checked, he qualified for the program. I felt a sense of both relief and incredible hurt.
For the first (almost) 3 years of Mark’s life, I have been what I would call “the default parent”. I am the stay at home mom. This is my job. This is my primary function. This is what I do. This isn’t to say that his Dad isn’t around. He is very much involved in Mark’s life and adores him. This just means that most of the time, Mark comes to me if he wants or needs something. It also means that anything pertaining to Mark typically lands on my shoulders (school registration, insurance, appointments, medications, etc.)(which is fine, by the way. I love doing it so it isn’t a burden). As the one who has been mostly responsible for his learning and education up until this point, to hear your child is not where he should be (compared to other children), feels like getting punched in the stomach. That feeling of failure and a little reminder of not being good enough or doing enough began to rear its ugly head again. I felt as if I were being held over a hot flame. My blood boiled. My heart was pounding. I felt nauseous. I am pretty sure my face turned red. I let my child down once again. I simply didn’t do enough… or at least that is how it felt.
The team and I created goals and objectives we will all work together on to help Mark in school. We made a plan and we are ready to take our first step on the first day of school. I think the most moving moment for me was when my mind began to go at war with myself after the meeting concluded. In one corner, you had my emotional side telling myself I let him down. It kept telling me I failed him. It kept replaying moments I could’ve turned something into a learning opportunity or a time we could’ve focused on mastering a new skill. In the other corner, you had my logical side telling me that this was such a good opportunity for him. It kept telling me that there are other children who have gone through this. There are other parents who have experienced the same thing I am feeling now. It kept replaying the moments when I watched Mark do the impossible. He did what the doctors told me he could never do. Emotion and hurt in one corner and Logic and hope in the other. Let me tell you, emotion and hurt were kicking my butt and were winning for the longest time.
I am not sure the precise moment logic and hope won, but it did. I feel more confident knowing that my son has a care plan in place designed just for him. I love knowing that there is a team of teachers, nurses, therapists, and doctors that care about my son enough to do all that they can to help him excel in his classes. I am grateful I get to be a part of this team. I know Mark will thrive in a school environment. The structure and routine will certainly help him feel more comfortable and the other children will help with his language and socialization skills.
Once upon a time, a friend asked me what the greatest piece of advice I’ve ever gotten was. It took me a bit to think on this one as I have been given a lot of advice. My answer was:
Never lose hope. Hope is what pushes us forward and we can bring hope to others. Without it, there is nothing left.
I am feeling more hopeful than ever before and I cannot wait to see all of Mark’s success as his future unfolds.