LIVING THE NAKED NIGHTMARE

I am living the naked nightmare. You know the one where you go to school and for some reason you have no clothes on? That’s now my reality, as it is so many of us whose children have IEPs (Individualized Education Plan).

Think about it …

WARM BLANKET

Early intervention is a warm blanket. After a diagnosis or developmental delays become apparent – a team of professionals wraps you in their knowledge and understanding. They help you help your child. They support you when you are at wits end. They give you tools and knowledge to move forward.

COZY ROBE

Next comes the cozy robe that is preschool. Your EI team likely helps you make the transition. Administrators are understanding but firm. Teachers keep in touch and send you updates. You are greeted with a smile at your child’s conference. You learn the songs your child is singing. It’s a collaborative effort between you and your teacher to help your little one advance.

BUCK NAKED

Then it’s grade school. You’re stripped of that cozy robe and sitting in that IEP meeting buck naked. Completely vulnerable. Your preschool team may be able to help you out in the beginning, but after that you’re fending for yourself in a sea of jargon and legalese. You and your child are just a number. In many ways you’re a number administrators would rather not deal with – children with special needs can be expensive. They can drag down test scores. You are a liability for them. At least that what it feels like.

KNOWLEDGE IS POWER

The good news is the law is on our side. If you’re having a tough time in any of the steps of getting your child services, the more you know, the better off you’ll be.

UTLIZIZING EARLY INTERVENTION

• CLICKING WITH THERAPISTS: If your child’s EI team doesn’t give you the warm fuzzies that they should, speak up! You are not going to click with every therapist, and that’s okay. But if your child’s relationship with them doesn’t seem to be working, call your caseworker. A good therapist will understand, maybe even be relieved, if you ask for someone else.
• GETTING WHAT YOU NEED: If you feel your child isn’t getting the services he or she needs, again, speak up. Talk to you caseworker. Ask for additional evaluations. Use specific examples of delays and deficits you are concerned about. Share doctors’ reports if necessary. But keep in mind that early intervention, at least in the Commonwealth of Virginia, is meant to empower the parent. You are learning how to help your child. You are supposed to do the work. The therapists are essentially teaching you. However, if there are still issues, it’s okay to speak with the caseworker’s manager about your concerns.

CREATING A POSITIVE PRESCHOOL EXPERIENCE

• CULTIVATE POSITIVE RELATIONSHIPS: A lot of parents are overwhelmed at their first IEP meeting. Suddenly they are sitting in front of a group of people who are telling them what’s best for their child after seeing them once or twice or simply reviewing paperwork. Take a deep breath and remember this is the beginning of a very long journey through the school system. These professionals have the best intentions for your child. Try to cultivate a positive relationship from the beginning. So often we hear horror stories because that’s what people share. We rarely talk about the easy meetings or the good stuff because we don’t need advice or support after that happens.
• USE MEETINGS AS PRACTICE: This isn’t to say you shouldn’t take these IEP meetings seriously. You need to be prepared. But it helps to look at these early meetings as practice for the later ones. It shouldn’t have to be a battle this early on. See if a member of your EI team can join you. Be sure to have all documentation from former evaluations. If you don’t get all the services you believe your child needs – DO NOT SIGN. You should never sign the IEP unless you are comfortable with everything in it.
• COLLABORATE WITH TEACHERS AND THERAPISTS: Talk to your child’s teachers throughout the school year. Make sure you share with each other what’s happening at home and at school. You are no longer learning what techniques your child is utilizing in school, so be sure to set up observations so you can carry over their school skills to home. Most professionals really appreciate and enjoy doing this. But it’s on the parents to set these sessions up.
• SET EXPECTATIONS FOR KINDERGARTEN: From the beginning of your child’s final year of preschool, you should be talking to your child’s teacher about what you want for Kindergarten. Fully included in the general education classroom? Make that clear. Do you think your child might need an aide? Start that dialogue early on. The more you share the easier it is for the teacher to document needs and get the requests started early.

ENTERING GRADE SCHOOL WITH CONFIDENCE

• START OFF STRONG: By now you should be more comfortable with the IEP process. Go into that first meeting knowing what you want and be ready not to back down. You want to start off with as few restrictions as possible.
• PUSH IN VS PULL OUT: If you want your child to have meaningful inclusion, pushing in is important. “Pushing in” is when therapists will provide services in the general ed classroom rather than individual or group sessions in a separate room which is referred to as “Pull out”. Ask for push in wherever possible. You can always move to more pull out later, but it’s far more difficult to request more push ins. Many therapists find it easier and less time consuming to pull out, so be ready for some of them to argue against providing services in the classroom.
• KNOW YOUR RIGHTS: The law is on your side. Read up on Wrightslaw. Talk to more seasoned parent advocates. Know what the kindergarten requirements are. Attending these meetings with confidence and knowledge will help you get your child everything he or she needs.
• BE POSITIVE: As always, you want to have a positive relationship with your child’s team. Most likely they have the best intentions. However, you child is one of many, many students. They are trying to do the best for everyone. That is a lot of demanding parents to juggle. Your meeting will likely go better if the IEP team doesn’t dread seeing you. That’s not to say you shouldn’t fight for your child’s needs if and when necessary. But you can and should be nice about it whenever possible.
• PICK YOUR BATTLES: While it’s true that every goal you want your child to meet should be written in the IEP – sometimes that is not possible. Go in with a long list, but make sure you know which items are nonnegotiable and which are not as important.
• BREATHE: Even the most seasoned advocates dread IEP meetings. Even if they go well, they are a huge source of stress, no matter how prepared you may be. Try to get rest. Bring your favorite coffee or tea to the meeting. And remember it’s a journey.

I was with my son at the farmer’s market a couple of years ago. He has Down syndrome. A mother approached me and told me her adult son has Down syndrome. We had never met before, but she felt compelled to wish me good luck with the school years; she said she still has emotional scars and bruises from those days. Her words have stuck with me. We have 12 or more years of this journey through the school system. That is, potentially, a very long battle we’re preparing for. I hope I don’t have to fight. But if I do, I want it to be on my terms.