Back to Basics: Real Support for Special Needs Families

Today, Sara shares how you, as a special needs mom, can help your family and friends learn how to support you. She shares the hardships that special needs families face on a daily basis. She stresses the importance of listening and asking appropriate (not intrusive) questions to understand better what a special needs family is going through. She emphasizes encouraging the family rather than pitying them and shares examples from her life as an example of what NOT to do. She gives helpful ideas for making special needs children and moms feel wanted and included. This is a fabulous episode if you are a friend of a special needs mom who wants to do better but doesn’t know how. 

February 21, 2023; Ep. 116

Key Moments:
[1:02] Acknowledge that the special needs family life is hard
[2:27]  We don’t have the luxury of turning hardships off
[3:30] Do research on the child’s deficit so you can know more
[5:00] Be curious and ask questions but not intrusive ones
[7:26] Offer to spend time with the child, to get to know him
[9:03] Ask, “How can I help you?” not “Can I help you?”

Transcript

[0:00] 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 for you to feel connected and encouraged. 

[0:16] Hi, this is Sara Clime. Thank you for joining me today, and welcome to episode 116. This month, we are talking about how to support special needs families. For me, I feel that the most important fact to point out first is that every person and every family is different. Every person and every family situation is unique. The advice I am going to give needs to be taken with the best intentions in mind. What works for my family and me might not work for others. I also feel that where we are today, almost 11 years past diagnosis, is obviously different than where we were five years ago. I am absolutely certain it is vastly different than where we were 11 years ago. 

[1:02] With that said, the first thing I think that you could do to help support the special needs families in your life is you could simply acknowledge that everything in their life is amplified and acknowledge that parenting and caregiving are two totally different things. For example, if you're a parent, do you remember what it was like to take an infant out somewhere? You had to pack what felt like 100 things. It took you what seemed like an hour just to leave the house to run to the store for a simple item. That's parenting. Now caregiving, we have that same issue, but it is forever with the additional amplification of behavioral issues, worrying about the repercussions of those issues. If you have physical disabilities and you're running errands, can your child get into the building or establishment? Can you even get to the building or establishment? Let's not even talk about inclement weather and if there are puddles, snow drifts, or parking issues. Then if we are leaving the house for an extended period of time and your child is medically complex, there are literally life-saving measures that you might need to think about, and this is for the rest of your child's life. Most of us are planning our long-term health care along with our childs. Who will be taking care of us in our old age? Who will care for our child if or when something happens to us? See? Amplified. 

[2:26] We don't have the luxury to turn it off. Being sympathetic to that fact and not minimizing that helps more than you know and know that we are not catastrophizing; we are preparing. As I said, we're usually a minor issue that is easily magnified; we must be prepared for it. This is not being pessimistic; this is being realistic. Using the infant analogy, when you have a newborn, you don't decide to leave the house and leave. You have to pack everything but the kitchen sink. While we times that by 1000 for the rest of our life. We add 50 different issues before entering the store, and 50 more once we're inside. All I'm saying is that we learned to be prepared. So what are some realistic things that you can do to help friends or families who have children or individuals with disabilities or special needs? 

[3:23] First, you could do some research. In this day and age, information is at our fingertips. Use resources. My son has an incurable, terminal, progressive form of muscular dystrophy called Duchenne. I cannot begin to tell you how many friends, family members, doctors, and even strangers have asked me. Is it getting better? They have called it multiple sclerosis. They have said some of the most harebrained things to me. As I said, some of these are family members. With that said, maybe you're sitting there saying I would never do that; I know everything there is to know about that diagnosis. I know a lot. Maybe that is true. Understand that if you've met a child with a disability or a special need, understand that you have met one child with a disability or special need. You know a child, let's say, with autism, but that does not mean that you know the ins and outs of the next person you meet with autism. Every individual is different. Saying that you understand autism as a blanket statement is like saying that you walk into a convention center of 50,000 women and saying I know every woman or that you walk into a room of fifty toddlers and say I know every toddler. Everyone is different, and that is the same for people with disabilities and special needs. 

[5:00] Be curious; ask questions. But be careful not to cross over into voyeurism. Let me give you an example. Ask yourself, would I ask this as any other three-year-old or eight-year-old or 18 or 25-year-old? If you wouldn't ask another 18-year-old or their parent if they could be intimate, or have personal relations, or go to the bathroom independently, then don't ask a person with disabilities or special needs or their parents or caregivers that question. Yes, I use this example because it has happened. It is inappropriate. You can ask, are there any accommodations personal or otherwise I can help provide to make your visit or stay more inclusive? That is an acceptable and inappropriate question. Knowing how my son or someone else's son or daughter, or people in our care approach personal hygiene or intimate issues is no one else's business but their own. It is no one else's concern, and it is intrusive. When you do ask questions, listen. When you ask questions, chances are the answers will not be short; they will not be sweet. Our lives are complex, and parts are gritty, and they are not tidy. You will most likely be uncomfortable. You will not be able to fix it, and we don't expect you to. But here's the crucial part. Do not pity us. Don't tell us we're an inspiration or it's all going to be okay. Most of us really love our lives. We are blessed. Our children are amazing, but our lives are hard, and that's okay. Just sit in that space with us with no judgment. If you don't want the unvarnished truth, don't ask. It's better not to pretend to care than to be unauthentic and waste our time asking. Now I know that sounds harsh, but our stories are difficult, and we have to tell them repeatedly to doctors, hospitals, teachers, administration, clinicians, other families, friends, our children's peers, and even strangers. It is emotionally and mentally exhausting. 

[7:26] Another thing that you can do is simply offer to spend time with our child and get to know them. If they are medically complex, let your friend or family member know your intention is to help and that you want them to feel comfortable leaving their child alone with you. Even if it's for a walk around the block so your friend can go to the grocery store alone, show your family or friend that you're willing to do what it takes to help. Another thing that you can do is to include us and invite us to do things. We might not be able to do something but invite us anyway. If you're afraid your house isn't accessible for those with physical disabilities, ask. Tell us that you want to include us and don't want us to do any of the work to figure it out. Ask us what we need to do to be able to come and participate. Chances are we may offer to host the barbecue or friends' night. If that's the case because our house is accessible. Let us sit you can simply say okay; if you're sure we can't make our house accessible for your family, that's fine. You're not going to lift a finger. What time should I come over to clean, cook, and set up? Can we rent somewhere else? Can we go to a park? Make a party, a girls' night for setup. Be careful, though, don't invite your friend or family out of obligation, knowing they'll say no. Being authentic is the key. Be prepared to do what it takes to get them included. Chances are it's going to be harder. Our lives are hard. It's not going to always be easy. 

[8:58] Ask how you can help us, not if you can help us. We always need help, so simply asking how can I help you. Sometimes you might have to say I am going to help you, so you might as well tell me what you need because I'm going to give you something. You might as well tell me what you need so you get what you want. Don't wait until we ask for help. We'll say no even if you ask us if you can help. I've said on past episodes, actually I think it was just last month that I needed to ask for help more often. While that is true, it's actually more about TJ, my son, accepting help from others. My husband is always trying to help TJ, but TJ has it in his mind that I slice a better apple, straighten a better blanket, and pour better water. Craig always tells TJ, "I know how to pour water, TJ." My husband tells TJ early in the evening, especially on evenings I've had a hard day. "TJ, I'm straining blankets and getting your water today." Or my mother-in-law always makes sure to take TJ for a few hours during school breaks. She doesn't ask; she texts all of us, including TJ, and says, "Will Wednesday, Thursday, or Friday work for lunch and a movie?" I don't have to think of the day, the time or come up with what they will do. She asks, "Which day will work for this activity?" Sometimes maybe it doesn't work. She puts it out there. 

[10:29] Okay, that was a lot. Maybe it seems like too much. It is overwhelming, and that is okay because it is. If all else fails, go back to listening and being there for us. Be genuine, and love us. Be willing to be uncomfortable and sit in those uncomfortable moments with us. It's okay to be uncomfortable. My last piece of advice on how to support families of those with disabilities or special needs is to take it one step at a time. We had to. We did not learn how to do this life overnight; you will not learn how to support us overnight. We don't expect you to get it. We don't expect you to understand at all. This is our life. Like I said earlier, we don't ever get to shut it off, but you do. We know that, and we are grateful you get to step away, reset, and recharge. 

[11:28] There's one thing I would like to leave the moms, dads, and caregivers: be patient to those who are learning to support you and are authentic in that journey. This is new to them. There are good people who genuinely want to learn and genuinely want to help you and your loved ones. With that said, there will be people in your life that are not genuine. Not everyone is entitled to a space in your life. If you're new to this and this journey, friends and even family members do not need to know all of the things. There will also be friends and family members who do not get it and do not want to get it. There may even be those close to you who believe you are  "over the top" in you're advocating or believe your child needs more discipline. They may never learn the nature of your child's diagnosis. Friend, you need support. You don't have to do it all alone. You have the right to advocate for support. You are not over the top. You are important enough to surround yourself with those who will support you. Never stop loving yourself and believing that you deserve support. Lastly, if there is anything we at Take Heart can do to help support you right now in this moment of your journey or down the road, Amy Carrie and I welcome you to email us at takeheartspecialmoms@gmail.com We'd love to hear from you. 

[12:58] Thank you for joining us this week on Take heart. Our prayer each week is for your heart to be encouraged. We are grateful you are walking on this journey with us. If you have any questions or comments, follow the links in our show notes. We'd love to hear from our listeners. God bless. All our resources, including the entire written transcript of this episode, are available on our website at www.takeheartspecialmoms.com. There are also quick links to anything we mentioned in this episode's show notes.