Back-to-School Tips for Parents of Children with Cerebral Palsy
By Anita Howell
CPFN Special Contributor
Most school districts are in full swing by now and, regardless of what turmoil the pandemic is currently bringing, there are a few things about back-to-school that remain consistent every year. Let’s take a look at a few.
Finding Your Voice for Your Next IEP Meeting
For those of you who may be new to putting your child with cerebral palsy in school, welcome to the world of the IEP. Love ‘em or hate ‘em, they are an essential part of helping your child get the most out of education.
An Individual Education Plan (IEP) is a federally mandated, legally binding document that details an individual child’s goals, milestones, and the steps educators will take to meet them. IEP particulars vary from state to state, but none of them are allowed to provide less than federal law requires.
IEP meetings are definitely not something I enjoy. Even as I have typed this article up, I have felt the sinking feeling those meetings bring. But, with 14 years under my belt, I can honestly say they do get easier over time. This is what I wish I had known in the beginning of the process.
7 Tips to Empower and Reduce IEP Stress
- As much as possible, try to avoid allowing the conversation to get confrontational. This takes a toll on your child’s greatest advocate—YOU.
- Put all of your concerns, needs, and questions in writing. This will limit the stress of trying to remember everything. Also, consider giving a copy to each member on the team that includes each request, why you feel it is important, and your expectations regarding denial of the request.
- You are an equal member of the IEP team, so a “no” from the team is never final until you ALL have reached an agreement.
- The ‘Stay Put’ clause within the Individuals with Disabilities Education Act has been my greatest stress reducer. This clause states that the team cannot change anything within the IEP that you, as a parent, dispute until you have exhausted your full due process options. So, if you reach an impasse on a team’s request to reduce or eliminate a service, simply say, “I dispute this change and would like a facilitated or mediation meeting with the state. Therefore, according to the ‘Stay Put’ clause within the IDEA, this change cannot be made until we have an opportunity to meet with the state.”
- Be sure that the person who is taking the minutes adequately documents all your concerns and any requests for a facilitated or moderated meeting.
- Request that each denial be placed in writing with their reasons so that you can follow up. If someone is in a gray area with their answer they will most likely agree to your request rather than putting it in writing.
- When you receive your hard copy after the meeting, carefully review it to make sure that it is accurate and represents all that was covered in the meeting.
When reviewing your requests and team suggestions, consider whether they lead to a functional IEP. If any of the goals can’t be met without a specific accommodation, then it isn’t really functional without that accommodation, meaning it can’t truly be implemented. Since the IEP is a legally binding document, a non-functional IEP means the school is automatically non-compliant.
Phrases That Empower
Some words and phrases get the team’s attention because they show that you are aware of your rights and their obligations. They are: ‘Stay Put’ clause from the IDEA, equal member of the team, functional/non-functional IEP, least restrictive environment, non-compliant, and the most attention-grabbing phrase—moderated meeting. These phrases and tips will all lead to reducing stress and empowering you as a parent.
Permission to Rethink Everything and Be Creative
Especially in situations where a diploma isn’t helpful to a child, reconsider each and every goal in your child’s IEP. Are they helpful? Will they bring more freedom or independence for your child? Will they improve their quality of life? It does become more flexible in high school with less testing; however, even in elementary school each goal just needs to be measurable and obtainable. Dream a little and brainstorm with your child’s team about some new goals that you and your child can get excited about.
Finding the Best School Models for Your Child with CP
By now most people are familiar with the idea that a child doesn’t have to physically go to school to attend classes. When a child has special needs, their options are a bit different and, fortunately, more responsive to those needs.
- In-Person: This is the typical model we all recognize—our child attending school in person with their peers.
- Virtual: Attending through virtual classes and sessions with your child’s class or one-on-one with a teacher. The structure may vary from school to school. Often you are committed to remain in the virtual program for a full semester and it will not be with your child’s current teacher or class.
- Intermittent Homebound: For children who are not able to meet the attendance requirements due to health or other extenuating circumstances, this model prevents attendance compliance issues for parents. For our son, Ryan, this means he can sleep in when showing signs of fatigue or seizure activity without a doctor’s note. He attends school as he is able, and the total homebound hours are determined based on his actual attendance. Homebound hours may be served through in-person teacher visits or through virtual sessions with his teacher. This prevents all of the stress of attendance clerk calls and doctors’ notes.
- Full Homebound: Has some of the benefits of Intermittent Homebound, but no classroom time. The child’s education is provided one-on-one from home, either virtually or in person. This option is best when your child will have an extended period of not attending school in person, i.e., surgery recovery, intensive therapy programs, etc.
Bullying and Children with Special Needs
I’m not thrilled to be addressing this, but it can and does happen. The fact is, children with special needs have been shown to be at a higher risk for bullying in school. But you’re not helpless when it comes to their protection. Your child’s IEP can be useful in developing ways to prevent and respond to bullying. And persistent, extreme bullying is covered under Section 504 or the Rehabilitation Act of 1973 and Title III of the Americans with Disabilities Act. You can help your child by:
- Listen to your child
- Be on the lookout for changes in your child’s moods and behavior
- Be aware of any drop in your child’s grades
- Knowing your rights, and those of your child
- Help your child to create a strong support system
For more tips on how to cope with bullying, visit stopbullying.gov.
CPFN Special Contributor Anita and her husband Wes have been married since 1988 and are the proud parents of Ryan, 17—CP Warrior, and Emily, 28. Emily and her husband, Caleb, have filled their lives with the joy of being Yaya and Pop Pop to 2 year old Easton, “Easty”, and 6 month old Genevieve, “Vivi.” Ryan also enjoys his new title of Uncle Ry Ry. You can find out more about their journey here.