How do you feel about advocating? Do you feel unqualified, overwhelmed, or intimidated? Amy shares how her first experiences advocating for her child with invisible disabilities left her frustrated and tearful, and seven lessons she’s learned to help you advocate with calm and confidence.
September 7, 2021; Ep. 51
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Amy J. Brown
(0:23) Welcome to Take Heart, where our goal is to offer encouragement, give hope and insight, so you can flourish in your journey as a special needs mom. As we explore monthly themes, share inspiring stories and practical tips, our desire is to continue to serve you and new listeners. You can help us spread the word by subscribing, leaving a review, or sharing the podcast with others. Carrie, Sara, and I want to thank you for joining us today.
(1:05) Welcome to season two of Take Heart. We are so excited you're here with us today. This month, we are talking about advocacy. I have to be really honest and say when we first discussed this topic, I was not that thrilled about it. Why? Because honestly, I have not felt like I've done a very good job of being an advocate. Maybe you feel this way too. Maybe you had high hopes and a list of accommodations your child needs at school, only to find out that the school could not help you. Maybe you advocate for kids with hidden disabilities, and been on the receiving end of judgment over their behavior and had your parenting blamed for their actions. Maybe you've had health care professionals dismiss your concerns and doubt your experiences. Maybe new to your child's diagnosis, you've joined an online support group hoping for guidance, only to be overwhelmed by the myriad of treatments, acronyms, and just plain old complaining, so you sign off overwhelmed. Maybe you were brave and reached out to a family in your church hoping for connection, only to be rejected because they do not understand your child's diagnosis. Have you had any of these experiences? I've had each one of them. I want you to know that you are not alone, that God cares for you and your child, and that you can be an excellent advocate for your child, your family and even for yourself.
(2:35) To be an advocate, according to the dictionary, is one who pleads the cause of another. So advocating is simply supporting, defending, promoting and speaking out for your child. Now I'm going to admit to you that it's not always easy. Let me tell you about my first IEP meeting. I came to the meeting with high hopes, but I sat in that meeting willing myself not to cry. I attempted to look calm and confident, but inside I was a mess. I was trying to explain my daughter's condition. She has reactive attachment disorder and fetal alcohol spectrum disorder. I wanted the school officials to understand how these affected her behavior. She'd been having problems at school with academics, but the bigger issue was her behavior. I was already wrung out with stress and overwhelmed with worry about all these issues. Not only the issues that we were seeing at home, but also what we were seeing at school. I was exhausted, and I needed help. This was my first ever meeting, like I said, and I had no idea what to expect. I hoped the professionals in the room would have solutions for what we were facing. I hoped that finally somebody would get it, but that was not the case. As soon as I sat down a well meaning social worker asked me, "What is your home environment like? What is happening in your home to make her act out?" That is when tears started, angry, frustrated tears. I wanted them to understand that this is not an issue in our home. This was an issue with her attachment disorder and the effects that drug and alcohol had on her brain, but I couldn't say anything. I was too emotional. I felt ashamed. I felt like I was getting blamed. This was my first IEP meeting, and it certainly was not my last. I have sat through many meetings, and these meetings can feel overwhelming, frustrating and confusing. It's not just IEP meetings. There are other places where you may feel overwhelmed and unsure how to advocate for your child: maybe it's a new doctor or a therapist, or maybe it's your mother in law, or a new family, or your church. The list goes on and on. Hopefully as moms of special needs kids, we can learn to enter into these situations with confidence and calm instead of tears and frustration.
(5:00) Here are some things I've learned along the way to help me advocate for my children. Number one: you do you. What is your advocating style? I have to be honest and tell you that I get a little overwhelmed when I hear the phrase advocate like a mother, and then I see an Instagram story about some mom, who explained how they went all mama bear, how they kicked butts and took names later. There's nothing wrong with that kind of mama bear, but there is more than one kind of mama bear. I don't work that way. I'm calm. I'm a slow processor. I like to think about things and write them down and follow up. That's okay. Just like it's okay to be more assertive, but advocate in a style that is comfortable and that fits you. Maybe you have a new diagnosis, and you don't feel qualified to advocate. It's okay to take a minute and go at your own pace. I was chatting with another mom recently who had just gotten a new diagnosis, and she said, "I feel unqualified to talk to school. I don't know enough about this diagnosis." That's okay. You will not know at all, but you can still be an advocate. Start with what you do know. So whatever type of mama bear you are, you can defend, support and plead the cause of your child. What style of advocating works best for you?
(6:19) Number two: be the expert. I know, I just said you don't have to know it all and you don't, but you are still the expert on your child. You know your child better than anyone, so be the expert for her. If you are advocating at the doctor's office, or an IEP meeting, it can be a bit overwhelming to sit across the table from a professional or in an IEP meeting there's many professionals. Remember, don't be intimidated. You are the professional when it comes to your child. This is your chance to educate the people who work with your child on her condition. As far as the diagnosis goes, you don't have to know it all, but be prepared to share a short explanation. Make it short and concise to fit the situation. The explanation you give a Sunday school teacher is not the same explanation you would give a doctor. In my case, people do not understand reactive attachment disorder. They have a lot of misconceptions about it. They assume that when a child cannot attach it means they're withdrawn and some children are. But I've had so many people say to me, "oh my goodness, she's so friendly. Surely she doesn't have attachment issues." What people don't understand is that kids with reactive attachment disorder are very friendly to strangers. It's their parents they don't attach to. So give a short explanation of your child's condition. Explain how that condition affects your child and the day to day. Remember that the child they see at school, or the ten minutes in the doctor's office is not necessarily the child you see at home. So educate others on your area of expertise. You cannot expect them to know what's happening if you don't tell them.
(8:02) Number three: ask questions and keep a record. Don't be afraid to ask questions. When you're advocating for your child, you will be in many situations where you will need to keep a record. I know this sounds really simple, but I didn't do it at first, I just assumed I would remember. I realize looking back this was very hopeful thinking to assume this. I mean, I'm a mom of six, I've so many things on my brain, I don't know why I thought I would remember it all. Keep a record. For example, when I am at an IEP meeting, there are so many different people. Every professional in the meeting will speak. There's a great deal of information. I take a notebook and take notes. I jot down the names of the people. I jot down their role. I make notes on what is said and what questions I may have later. This also is important when you're at a doctor's meeting, or a meeting with your church's children's ministry leader. Sometimes in the moment, there's so much going on that you may need to go home and think about some of the information. Don't be afraid to write things down and ask questions like, Who do I follow up with about this issue? Can you give me your number? How do I follow up with you? Ask questions. Ask for clarification. If you do not understand something, ask. It's okay.
(9:16) The next one is to build bridges, not walls. Remember that the teacher, healthcare professional, your neighbor and even your mother-in-law can be your ally, but you need to have patience and grace. Here is what I mean by this. For the most part, people want to help, but they may feel overwhelmed by the care your child needs, or they may not understand why you have certain restrictions for your child. This is very common with kids with hidden disabilities. Moms often tell me, "My family just doesn't get it." Of course they don't. They don't live in your house. They are not the expert on your child. You are. How can you build a bridge of communication and trust? Here's an example. Years ago, my mother-in-law, who by the way, was wonderful, wanted to take all the grandkids to see a show. It was kind of like a Nutcracker play or something. I knew the late hours and the environment would overstimulate my daughter, and she would probably act out and ruin the experience for everybody else. I knew my mother-in-law would be really disappointed because she was counting on this time. I explained the situation and gave her some alternatives that might work. I could have just shut her down and said, "No way. That would be a disaster." Instead, I built a connection with a much needed ally. Another example is your child's teacher. At the beginning of every school year, I sent a letter to each of my child's teachers. I give them a brief explanation of my child's disability. I explained what we expect from our child in her class. I thank her for working with our child. I encourage her to reach out and let us know if she has any concerns. I want her to know I support her and that I want us to be a team. In this way, I open the door to have a relationship. This is important because the teacher does want what is best for my child. I want to have a relationship with my child's teacher, so I can walk into the room and already feel like I have an ally. While not every relationship with the teacher, lady at church or healthcare provider is positive, I have found that reaching out in the beginning with information and support is very important. This builds a bridge of trust and communication.
(11:34) Number five: lower your expectations and prioritize. Rome wasn't built in a day they say and neither is advocacy. Advocacy is a marathon, and you need to pace yourself. In that first disastrous IEP meeting, I went in expecting professionals to have all the answers. I hoped they would provide all the support my child needed and also bring me a hot chai tea latte when I dropped her off. I'm kidding about the latte. Really, I had very naive assumptions. When that meeting didn't turn out like I wanted, I had to learn to prioritize what I wanted for my child. The next time I went in, I made a list of my top two to three priorities. In our situation our daughter was struggling with her academics and her behavior. She had low grades, but she was also stealing and bullying the other kids. I informed the teacher over and over again, she will steal when she's unsupervised, but the school was not equipped to have their eyes on her all the time. I had to let the stealing go, as hard as that was, and focus on getting my child into an environment where learning was optimized. As far as the bullying went, most of that happened at recess, so they gave her an alternative recess. Those two accommodations fit my top two priorities. I had to pick my battles, because the school is not equipped to do it all. If you struggle with caregivers, family members, doctor's appointments, prioritize what is important, and keep advocating.
(13:11) Number six is to find your own advocate. That's right. Find an advocate for yourself. I know that a lot of times as special needs moms, our focus is on our children. I'm here to say something to you right now and that is you need an advocate. Maybe you need an extra set of ears at a doctor's office, because you can't remember everything, or a friend to call when you feel overwhelmed. Maybe you need a therapist. Find an advocate for you. We had a wonderful special ed teacher who prepared me for meetings with the school. She was so helpful and told me what to ask for, what I should say. She explained the acronyms because there's so many in an IEP meeting. She was wonderful. I'm so grateful that I was brave enough to ask her for help, because I needed her to advocate for me. You need someone who can plead your cause. someone to support, defend and promote you. Friends, as special needs moms, we're on a long journey, and we need others to support us on this journey. Find your own advocate.
(14:26) Last, but certainly not least, remember to ask God for wisdom. Psalm 23 is my all time favorite Psalm. I have recited it in lots of dark moments. I love how it says, "The Lord is my shepherd. He gives me everything I need." Not only does God know what we need, but he cares about every little detail of our lives and the lives of our kids. You can take it all to him. Every little tiny concern you can take to God. You can ask him to go before you. You can ask him to give you the words to speak. You can ask him to help you find the people you need, the treatments you need. I've asked God for wisdom, for insight, and I've prayed a lot of please help me prayers. All of it matters to God. He is our ultimate advocate. One of my favorite verses when I think about God, who cares about our every need, and who goes before us, is Deuteronomy 31:8. "It is the Lord who goes before you. He will be with you. He will not leave you or forsake you. Do not fear or do not be dismayed." I'd like to leave you with a prayer as you continue to advocate for your child. May God go before you and lead you. May God go behind you to protect you. May God go beneath you to support you. May God go beside you to befriend you. Do not be afraid. May the blessing of God the Father, the Son and the Holy Spirit be upon you. Go in peace to love and serve the Lord.
(16:23) Thanks for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are grateful that you are walking on this journey with us. Be sure to subscribe to our monthly newsletter at www.takeheartspecialmoms.com, and follow us on Instagram or Facebook @takeheartspecial moms. If you have any questions or comments, follow the links in the show notes. We really do love hearing from our listeners. Thanks for listening. Next week Carrie will share her thoughts on advocacy.