Your job as a parent is pretty simple on paper: love your child.
This means changing peanut butter poop diapers; it means being woken up by a tiny little foot in your neck in the middle of the night; it means watching the same Cocomelon song five times in a row because the only shot at sanity you have is the insanity of repetitious Cocomelon music.
That love you have for your child – who ate the last cookie and still had the nerve to smile at you sweetly and ask for another bedtime story – goes beyond sleepless nights. It goes beyond the care, time, and money that you give. That love also translates to advocating for your child and teaching them to self-advocate. However, when you have a child with special needs, advocacy can seem like a complex thing.
Below are some tips to be a better advocate and teach advocacy to your kids, but remember, through the whole process, the number one driving force is the same as it was in the infant stage when your child didn’t sleep through the night, or the toddler stage when they peed all over your carpet, or the preschool stage when they refused to get dressed for company and ran around the house naked- it is and always will be to love your child and want what is best for them.
Have a Goal
The first part of being an effective advocate is knowing what you want. Going to an IEP (Individualized Education Plan) meeting without an outcome in mind can be like trying a new restaurant without looking at the menu – you may end up with a good meal, or you may find yourself nodding along and ordering the fish because that’s what the waiter said to order even though you hate fish. Always have an outcome in mind. This can be long-term, “I want my child to have a successful career.” However, it’s best to backwards map. In other words, you are considering how shorter-term goals will lead to that long-term goal. For example, I may want a thousand dollars by the end of the year, but it’s easier to say let’s put a hundred dollars in the savings account each month. So, keeping in mind that you want your child to have a career when they enter adulthood, your goal can be, “By the end of the school year, I want my child to add and subtract numbers.”
Having a goal in mind helps you focus on your advocacy. A good way to practice this is to write out five outcomes you want from your next IEP meeting. Enter the meeting with these five things in mind. With these five things in mind, you know where you need to drive the conversation. For example, if your child struggles with math, focus on math and not another subject. This is good both for IEP meetings when you are literally goal-setting, and life in general.
Another thing to think about: what goals does your child have? Have them set the goal, whatever it may be. Again, this may be long term “I want to be on my own, living my best independent life,” but remember to set short-term goals that help work towards this long-term one, like “I want you to leave me alone while I do my homework.” Short-term goals are easier to work towards, and when your child is involved in the goal setting, they will be invested in working towards it.
Ask Questions
Any good teacher will tell you that questions are the best! You learn so much through a good question! Question your child about their goals, interests, strengths, weaknesses, and what they notice in each class and between classes. Ask about your child’s life so that you can better understand your child and their struggles. Question your child’s teachers. What do you see? What do you think they need to work on? Where do you think their strengths lie? What do you notice about their social group? Be sure to ask these questions before the next parent-teacher conference. Teachers are often pressed for time on conference days and the dates themselves are months apart. You can gain a more detailed picture by asking when the teacher’s attention is not divided. Just tap into that inner detective or conspiracy theorist (whichever comes more naturally, no judgment) and question everything. Gather information by asking questions because then you know exactly what is going on and can start to problem solve. Your child should also ask questions – at meetings, in class, throughout their life. This doesn’t have to be done publicly; they can send questions electronically or write some on a sticky note in class but teach your children that the best way to problem solve is to ask questions.
Learn the IEP
Questioning is also good to do in an IEP meeting. There is a lot of jargon and many acronyms that get thrown around in the meeting – IEP, 504, PLAAFP, RTI, AT, FAPE, BIP, LRE, SDI. It’s alphabet soup at some of these meetings. This can be confusing and intimidating, but remember, you are a parent, not a special educator. It’s ok if you don’t “speak IEP.” You should not feel like you are expected to know everything; there is no shame in asking questions.
Remember that you are there because you, not anyone else, is the expert in your child. The IEP team should respect that. So if you need help understanding something, ask for clarification. Don’t let anyone talk over you or make you feel excluded from the meeting. This is especially true if something is raising a red flag to you. Asking the simple question, “Why do you suggest this?” will not only provide clarity, but also force others to explain their reasoning so you can then decide if it makes sense.
You and your child are the most critical IEP team members, and you need to know what’s going on and why. Make sure that you understand your child’s IEP, that it makes sense and reflects your child. Once you understand it, you can then make sure that it is being upheld. Was this assignment modified? Did they receive extended time? Were teacher notes provided? When you understand the IEP you can then uphold the IEP and if that IEP is not being upheld you can call another meeting.
If any of this is confusing or overwhelming, please note that you are allowed to bring whoever you want to the IEP meeting to advise you; friend, advocate, attorney, therapist, Big Bird – whoever has knowledge of your child and their needs. You do not need to be in this process alone.
Be Prepared
Whether it is going into an IEP meeting, a parent-teacher conference, or even just Back-2-School night, be prepared. Things run smoothly when you have a plan and a goal and understand the game’s rules. Be prepared to ask questions and have some questions ready. Be prepared to say, “I’d like us to focus on the behavior I’m seeing.” Be prepared to discuss your child’s strengths and weaknesses. Moreover, part of that preparation includes knowing what to expect.
Do some research on IEPs and IDEA 2004 to know your rights. Let me repeat that, KNOW YOUR RIGHTS. You, as a parent, have the right to call a meeting at any point, you have the right to hire an advocate, and you have the right to be as involved as you want to be. Parents have rights!
Furthermore, know what resources are available and what expectations are appropriate for your child and their stage of development, with their disability, and with their course work. Be active! If you don’t know, see who the best person would be to give you answers. All members of the school staff are listed on your school’s website.
Teach your child how to be better prepared as well. Be vulnerable and admit that you do not know what’s going to happen, so you need a plan. Teach them that having a plan can be a way to feel secure. Show them what that looks like – skills such as time management, planning and organization are not yet fully developed in a child’s brain, so it can be helpful for both of you to set the example and show them the confidence (and dopamine) boost you can get from going into any situation after some preparation and with a well-laid plan.
Document
Document everything. Calls from the school, notes from the teacher, time spent on a single assignment. Document behaviors you are seeing at home, what you are hearing about in school, after school, changes you’ve noticed etc. Document, document, and document some more. Moreover, always make requests in writing. You may be more comfortable talking about something over the phone, but make sure that the request for a conference and/or an IEP meeting is in writing and then do a follow-up detailing what was said in writing. Document everything because you don’t know when something may come up. If you are in a meeting and the school says that your child doesn’t need extra time, having documentation on the three hours it took them to do ten questions will prove otherwise.
Lawyers require evidence, and so does special education. Remember that an IEP is a legal document based on the evidence you bring, so ensure you have that documentation. Have your child do the same if appropriate. Tell them to tally how many times they felt frustrated or note how long it took them to start their last test. The more documentation you have, the more prepared you will be to advocate for your child effectively.
Make Allies
Sometimes, the best way to support your child may be to make friends. Catch more flies with honey, right? Make allies where you can. If someone likes you and knows you are approachable, they are much more likely to keep you in the loop and look out for your child. Teachers are under a lot of pressure, so a bit of friendliness can go a long way with them. Likewise, IEP chairs make a lot of meeting scheduling and other IEP related decisions. Paraeducators work with your child. They are often overlooked but may have the most one-to-one time with your child. Think of the school staff as a whole and make allies wherever possible.
This also goes for your child. Teach your child to make allies where they can and then utilize those alliances. Knowing who the basketball coach is may give you some leverage over academics. Knowing that your child likes the English teacher will provide you with insight into what that teacher is doing that the Science teacher is not. Opening the conversation with “My daughter loves your class” opens the conversation to what their strengths are and what works well for them within that class. If going to school or IEP meetings feels like going to war (which it should not), you should have allies who you know will be on both your and your child’s sides.
Communication
There is some overlap here, but it needs to be made clear – communication is always key. Make sure communication is open. Communicate as much as necessary. Communicate with the faculty, the staff, and with your child. When there is a problem, document it and let it be known. When things are going well, making allies means saying, “Thank you so much for your work with X; I’ve seen so much improvement.” Communicate with your child and listen to their feelings.
You love your child, and that, above all else, should be communicated with everyone in that meeting, but especially with your child.
These tips will help you and your children advocate for a better education. However, the special education process can be a lot to handle. If you decide you need additional support for For Minor & Young Adult Life Care Management or Educational Services, call Mary Jo Siebert at 410-967-0122.
If you or someone you care about needs additional support to help cope, The Option Group is here to help. Don’t hesitate to contact our professional care management team for assistance.
About The Option Group: Founded in 2010, The Option Group’s compassionate team of experienced Certified Life Care Managers and Educational Advocates provides services for families, their loved ones, medical professionals, and professional family advisors in Maryland, Northern Virginia, Southern Pennsylvania, and Delaware. The firm understands the challenges of caring for individuals who need assistance throughout their lifespan due to aging, dementia, disability, or serious illness. Our skilled providers possess over 100 years of combined experience navigating the healthcare maze and accessing hundreds of resources. The Option Group helps families spend quality time with their loved ones, providing clear choices that lead to better care. For more information, visit www.theoptiongroup.net or call 410-667-0266 (MD) or 717-287-9900 / 610-885-8899/ 215-896-6756 (PA) or 302-858-6449 (DE).