Take Heart

Misunderstood? How To Help Your Family Understand Your Life As A Special Needs Parent

• Amy J Brown, Carrie Holt and Sara Clime • Season 3 • Episode 114

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As a special needs mom, it can be difficult to feel understood and supported. Strangers don’t know us and our lives, and even those closest to us can miss the mark. This can be especially true when it comes to family members. We want them to understand our situation and be helpful, but their attempts to support us often make us feel more alone. Amy shares some great ideas and mindset shifts that will help us understand how to navigate these situations.

February 7, 2023; Ep. 114

Key Moments:

[2:53] A change in mindset
[5:07]  Starts with setting a boundary
[7:14] If you're a family member of a special needs family
[10:51]  Prayer of St. Francis

Resources

If you enjoyed the show:

Amy J. Brown  0:01  
Welcome to Season 3 of 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 for you to feel connected and encouraged. If you would like to partner with us as we encourage specialty moms and families, please consider donating to our mission. Click the link at the bottom of our show notes entitled "Support The Show. We thank you in advance for assisting us to bring hope, joy and connection to our listeners. 

[0:33] This is Amy Brown, and welcome. Do you ever feel misunderstood? I think I know the answer to that. As a special needs mom of kids with invisible disabilities, I've been on the receiving end of many comments by others. These comments can be annoying and hurtful as people do not understand the mental health issues and trauma my kids have been through and how that affects their behavior. Strangers do not know us in our lives, but those who know us and see the struggles and joys; they should get it right. No, not so much. This is often not the case. Let me tell you about a situation I had with my dear mother-in-law. Several years ago, we were going through a really difficult time with our daughter. Her behavior continued to escalate, and we were trying everything. Before I tell you the story, let me say I had a wonderful mother-in-law. She has since passed away. She was a wonderful person, and I loved her. She was helpful. She lived about three hours away, but she would drive up and make meals for my big family, shop and cook and do anything I needed her to do. She had a front-row seat to the drama that is Reactive Attachment Disorder and Fetal Alcohol Syndrome. I had been really honest with her and kept her up to date and all the therapies and the things I was learning and trying with our daughter. But one day, she sat me down and gave me some advice. She said, "Have you ever thought of having her memorize scripture to help control her behavior? Have you thought about praying some more?" Now, these comments came from a place of love. I'm not discounting the value of prayer and scripture. But this conversation hurt me and made me feel very alone. How could she miss the mark so much? How could she not see that this was so much more than behavior that could be controlled? Now whether you're a mom to kids with behavioral issues like mine or have a medically complex child, we all have these moments when the people we love and are closest to us, our moms, our in-laws, our siblings, just don't get it. Their attempt to support us makes us feel more alone. Today I want to talk about how we can help our family members be better advocates and helpers to us. 

[2:53] Before we start, we have to remember a few things. The first thing to remember is no one will ever fully get it. I wish they could, but they can't. Remember, you're the expert of your child. As that expert, you are constantly learning changing plans or treatment, and there are a lot of times when we as special needs parents, struggle to understand how to help our child best and manage this life. Offer grace to our family members that are on the outside looking in. They don't understand all that goes into our situations. They may be able to name the diagnosis, but the actual daily living of our lives they cannot understand. Here's an example. I had several comments from my own parents and family members about how they felt I was too strict with our children. They felt bad that my daughter specifically couldn't do the things my other kids could do. For example, She couldn't stay up late. She couldn't have sugar. I had learned her restrictions the hard way. Early bedtimes and limiting situations with too much stimulation were best for her and us. Often it made the people in my life think I was being unfair. I had to learn to offer grace when I was annoyed by these comments and try my best to make them understand. Another point to remember is this. If it is your parent that doesn't get it, remember that you are still their kid, even though you're a grown-up person. As a mom to adult kids, I am here to tell you that the transition to parenting adult kids is a tricky one, and there's no guide on how to do it. Sometimes your mom's unhelpful comments are coming from a place of love and worry for her baby, which is you. I've heard it said that unsolicited advice is taken as criticism. Let me tell you, I have worked really hard in my life not to give unsolicited advice to my kids. It's hard because my advice comes from a place of love and concern. Keep this in mind when you're trying to help your parents and family understand. 

[4:54] How do we help our families understand? How do we get them to partner with us in this journey as special needs parents in a way that is helpful? It starts with an honest and humble conversation about what you need. It starts with an honest and humble conversation about what you need and what you do not need to feel supported. It starts with clear boundaries; you have to set clear boundaries. Remember that clear is kind. You need to set boundaries for yourself and your family, but do this with the backdrop of love. Once you've set boundaries, be clear about them. If you don't want your parent to discipline your child, let them stay up late, or overrule your parenting, or talk about your child's issues and treatments on Facebook, express those expectations. It is best to do it when things are calm, not at the moment when you're upset. Be clear and loving. Keep it short and sweet. Long explanations of the reason you need this boundary are not always understood. When setting those boundaries, remember most of the time, we are all trying our best. Remember that your loved one is loving you the best way they know how they may feel left out or not understand how you live your life. That doesn't mean they can't change and improve the way they support you. Often, I couldn't see that the people in my life were doing the best they could. We both were. Express your love for your family member and how important it is to have them in your life and the life of your child while you set those boundaries. Tell your mom what she does right. Express your love for your father and your desire for a quality relationship. Tell your mother-in-law what you appreciate about her start small, then set one or two boundaries. No one responds to the demands that are not surrounded by kind and loving words and then give them a chance to do it right. It's not fair to not set a boundary and be annoyed. You have to be clear about what you need. Once you're clear, and you've asked your parent to do a certain thing, or set a certain boundary, give them the chance to do it right. They may not understand that this is important to you. It's important that you let them know. 

[7:09] Now, if you're a family member of a special needs family, this portion is for you. Maybe you feel like whatever you do, is right, or you're unsure what to do. Maybe you feel that you're older and wiser and you know better. You could be a pediatric nurse or a special ed teacher. Surely you are the expert. Please hear me when I say that I know you love the special needs family in your life. Thank you for showing up and helping. You have to remember a few things as we continue to offer support. Number one, no matter how much you think you know the full story, you will never fully understand what your family member's life is like because you are not living it. My advice is for you to show up and listen. Keep opinions to yourself. I often ask my adult kids, do you want me to listen, or would you like some help or advice? I get it as a parent to adults. When I see my kids struggle, I want to swoop in. Remember, the mantra of unsolicited advice is seen as criticism. If you have a family member, that's a special needs parent. They have enough criticism and hardship as it is. Why would you want to add to that? 

[8:20] Number two, don't take it personally. I know, I know, easier said than done. If your daughter tells you that your grandchild cannot do something or a comment you made is hurtful. Even if you do not agree, listen and respect it. Honor and love your special needs family. Show up and give help. Be practical, and keep your mouth quiet with advice and your opinions unless they ask you. But you can open your mouth and tell them how proud you are of them and give them words of encouragement. Moms are already hard on themselves to offer positive words. Now for those of you out there that have a family member that's parenting a child from trauma, or has invisible disabilities, remember that this type of diagnosis can be bewildering and difficult to manage. It is not just naughty behavior, so saying something like, "In my day, we would have spanked this kid," is not helpful. Do what you can to support this child and think about this. If you had a grandchild who was in a wheelchair, you would do your best to build a ramp (at least I hope you would) a ramp to help them. If a child could not walk, you would not offer advice on how to get them to walk. You would support, assist, and adapt. It is the same with kids with invisible disabilities. They need a ramp to be successful and included. But their ramp looks like a tight schedule, or not participating in all the Christmas activities or whatever their parents tell you they need because it's not about you. 

[9:50] For special needs families and those who want to love and support them. Let's remember this. Whatever we do, whatever we say, whatever actions we have, let's do what leads to love, or if we're in the midst of a misunderstanding or hurt feelings, even then, we can do what leads to love. My prayer is that in having this conversation, we can have unity and learn to love and support each other on this journey.

[10:13] I'd like to close with the prayer of St. Francis. Lord, make me an instrument of your peace. Where there is hatred, let me sow love; where there is injury: pardon; where there is doubt: faith; where there is despair: hope; where there is darkness: light; where there is sadness: joy. Grant that I may not so much seek to be consoled as to console, to be understood, as to understand, to be loved, as to love. Where it is in giving that we receive. It is in pardoning that we are pardoned, and it is in dying to ourselves that we are born to eternal life. All of our resources, including an entire episode transcript, is available on our website, www.takeheartspecialmoms.com. There are also links to anything we mentioned in the show notes of this episode. Thank you for joining us today.