Take Heart

Listening: How To Support a Special Needs Mom Through Life Stages

• Amy J Brown, Carrie Holt and Sara Clime • Season 3 • Episode 115

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No matter what stage of the journey a special needs mom is in, from the initial diagnosis to hospital stays to on-going medical/emotional support, it is important to remember that they need love and support. Carrie gives very practical ideas on how you can support a special needs mom through the stages of their child’s life.

February 14, 2023; Ep. 115

Key Moments:
[1:36] Practical ways to support a special needs mom
[2:31]  Fear that people are going to get tired of your neediness
[3:18]Initial diagnosis
[4:28]Child-growth chaos
[5:26] Hospital stays and lots of them
[9:34] Through the school years
[11:24]Check on the moms with teenagers


Resources

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Carrie M Holt  0:00 
Thank you for joining us on 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 anything you hear today would inspire a friend. Please share our podcast with them.

[0:23] Hi, there. It's Carrie M. Holt today, and this month's theme is about supporting special needs mothers and families. My family loves the books and movies entitled The Lord of the Rings. One of my favorite scenes is when two of the main characters, Sam and Frodo, are on the edges of Mordor. This is a spoiler alert, by the way. Mordor is this deep, dark, evil place and Frodo's job is to throw the ring of power, which everyone is after, into the ring of fire. Sam has been his companion through the entire ordeal. They have faced many obstacles, difficulties, and dangers. Just when it seems like Frodo has given up all hope that darkness has seeped into his soul from carrying this evil ring, Sam says to his friend, "I can't carry it for you, Mr. Frodo, but I can carry you." This mothering journey for mamas of children with special needs feels similar to the journey to Mordor, and we all need a friend like Sam. Sam has equal importance in his role. Without him, Frodo would never have been able to complete the tasks he was entrusted with.

[1:36] In today's episode, we're going to get very practical and talk about some specific ways that you can support a special needs mom throughout the different stages of her journey. If you are in that role as a special needs mom, hopefully, you hear your own voice in what I share today, that you nod your head in agreement and are reassured that you are not alone. If you have any other suggestions of things we can talk about on the podcast, please email me at takeheartspecialmoms@gmail.com. If you're listening today, and you're a friend or a family member, we thank you, and we hope that this gives you just a little bit of insight into our hearts and minds, and lives. 

[2:20] One of the things that is very difficult, being a mom to a special needs child is that you live with a lot of fear as related to your relationships: fear that people are going to walk away: fear that people are going to get tired of your neediness. I know those are fears that I have struggled with. There's also a lot of fear related to the fact that I think there's this stigma sometimes that if you are a friend to a family, or a mom who has a special needs child, that somehow God is going to call you to that same thing. Sometimes that does happen, and God provides friendships in amazing ways. But let's face it; it's not contagious when you have a special needs child. The truth is, we meet our friends, need support, empathy, help, and caring, and we're going to talk today about what it looks like through some different stages. 

[3:18] First of all: the initial diagnosis. During this time, we need time to get our bearings and adjust to the news. With the initial shock of my son's diagnosis, the last thing I wanted to have labeled on me was that I was a special needs mom. I was in denial because I wasn't ready for the role, title, and job description to change. Tricia Lott Williford, an author, recently wrote on her Facebook page about grief, and she said, "In my darkest valley, I personally needed acknowledgment that nothing was normal anymore, that everything had changed for me. I needed a free pass from anything and everything on anyone's calendar. I cannot return phone calls or emails. I could not have anyone need something from me." She's talking about grief in relation to the loss of a loved one, but that same grief is the grief that we feel as special needs moms. We need to be able to sit in the space of our grief and not have anyone need anything from us, especially during that initial diagnosis. 

[4:29] Secondly, in the middle of chaos. Do you remember what it was like to be in the middle of diapers, toddler tantrums, feeding issues, and potty training. Now throw on top of that several weekly appointments for speech, occupational, and physical therapy, homecare nursing who are in your home daily, tests, and doctor's appointments. Also, being on constant vigilance for viruses and medical changes in your child, no matter how slight. This is what mothers face who are raising children who are medically complex. During this time, we need friends to show empathy, even when we can't understand. We need the support of people that are continually reaching out, praying for us, and offering words of encouragement, again, not expecting a whole lot from us. Please don't forget the siblings, if there are ones in the family. Hospital stays. doctor's appointments affect the entire family, not just the parents and the child. I have always appreciated those who pay attention to our other children through the easy times that we have and also the hard times. I've had experiences when my other children were completely ignored, not asked about their lives, and all the attention was on Toby. I have heard siblings say that sometimes they don't feel seen. As parents, we're doing our best with our other children; we know they need to be seen. It's important for families who are supporting us also to see our other children. Don't minimize the trauma they're experiencing, just because they aren't the ones in the hospital. They need to know that they matter too. 

[6;17] The next stage is during hospital stays and afterward. My son has had 60 surgeries in the first 15 years of his life. I'm here to tell you that whether the stay is one night or two months, it still completely turns your life upside down. It's like having a car accident several times a year. You know what that's like. You have to deal with insurance, make phone calls and appointments, and have people come out to assess the damage. Well, a hospital stay is similar to that you don't plan on it, but it creates a ripple effect in your life, finances, and your daily routine. Here are some practical ways to help. Meals are always important. Grabbing groceries, and gift cards for gas. Some hospitals offer support, such as offering a gift card to the hospital for food, meals, or for paying for medication and bills while the families are staying there. You can also offer childcare for the other children that might be in the home. One really amazing thing I have received a few times throughout our journey has been a goodie bag, where one person or several people went in together and bought items such as: bottled water, healthy snacks, a journal or a notepad. That can be really important for parents to process what's going on. and also to write down questions. There are times when you're sleeping, and the doctor comes in, you feel like a deer in headlights because you know you had all these questions for that particular doctor, but you can't think straight, so having paper and pen handy during the times when they are not there to write down questions is really important. Another important item in that goodie bag could be chapstick and lotion. The hospital air is extremely dry, and your skin dries out quickly, especially in the winter. Soft tissues, please don't discount this, but the hospital tissues are atrocious. They feel like sandpaper. If you're a person like me, you spend a lot of time with some tears and the tears of your child. Having a box of soft tissues is really amazing. Another item that could be included in that gift bag is comfortable slippers or socks with tread on the bottom. I know; I wear those around my hospital room if I'm not leaving the room because it's much more comfortable sometimes than wearing shoes, especially at night. After hospital stays, one of the things that we really need is a friend to listen to. I tend to be a verbal processor, and I feel bad sometimes because I feel like I'm verbally expelling all these words on my friends. I appreciate it when a friend will listen and let me process what happened. The truth is, is we're going through grief again. It's the grief over the loss of time, the loss of routine, and then a lot of times, there are follow-up appointments, extra medications, care and medical procedures that will happen even after that stay has been completed. We need patience as it takes us time to get back into real life again. 

[9:34] What about during the school years? During the school years, parents are dealing with IEPs. Some are facing a lot of obstacles when it comes to educating their children, or in our case they might possibly be homeschooling. During these years, this is when the reality of our children's deficits compared to other children is really sinking in, and honestly, grief can be ever present on the surface of our motions. It's also when our children might be out in the world more, and we see other people's reactions to our child's disability. Honestly, sometimes it's rejection. One of the ways that you can support us is by inviting us over. If you ask, I will figure out a way to get my son's wheelchair into your house or suggest an accessible location for us to meet. It's also really important for you to teach your own children to ask good questions and to be a good friend, not out of pity for your child, but out of true interest in them as a person. Read your children books that have examples of children with different kinds of needs, like a trach, or braces, or a wheelchair from an early age. When they encounter children with disabilities like ours, they aren't in shock. Most importantly, it is important to teach your children to see those who have disabilities as people first. I hate it when someone says the Spina Bifida child, my child is not the Spinal Bifida child. He is the child or the teenager now, actually, who happens to have the diagnosis of Spina Bifida. Yes, it has shaped our reality and our perspective in life, but that's not all of who he is. 

[11:24] Lastly, keep an eye on your friends who have teenagers. In a word, they're struggling. This is where I'm at right now. Some of us are struggling because our children will never leave our care; we're worried about the burden it might have on the siblings or our children outliving us. We're grieving because our friends are celebrating their children's driver's licenses, planning graduation parties, and planning for college while we're just living life daily. Supporting friends in this stage means remembering them and, asking them how they are really doing, being willing to listen, which I think is an ongoing theme throughout this entire episode. It's just an ongoing theme of friendship in general. Truthfully, our kids are no longer those cuties dancing in the kitchen in their wheelchairs and rocking that extra chromosome. They are almost adults. They must shave and deal with all hormone imbalances and puberty. Now the world is evaluating how well they will contribute to society. Ask these moms to go out for coffee, take a walk, and truly see their hearts because they are still dealing with grief, brokenness, and pain. 

[12:39] Here's the deal. It can be difficult to be a friend to a mom who has a child with special needs. We know as well as anyone how difficult it is to care for others. We know it's hard work. But our greatest fear is being alone without someone who truly cares. You don't have to understand to empathize. We need your prayers and encouragement. Through being the hands and feet of Jesus, you are reminding us of the hope of Jesus and that God is faithful through difficult times. 

[13:14] Lastly, I would like to leave with another quote from Tricia Lott Williford. She said, "You can't always predict an emotional toll. What you fear with all your heart may come more easily than you expected. What you thought you could conquer may bring you to your knees. Go easy on yourself. If laughter finds you, pull up a chair and invite her to stay. Don't worry about what others might think. Tell them you're taking the day off from sadness, and that's okay. Remember that healing comes in telling the story a thousand times. Tell your story to someone today, and if you're strong enough, tell it again to someone tomorrow. 

[13:54] If you want to partner with us as we continue encouraging special needs mothers 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 for assisting us and bringing hope, joy, and connection to our listeners. All of our resources, including an entire written transcript of this episode, are available on our website at www.takeheartspecialmoms.com There are also links to anything we might mention in the show notes of this episode. Thank you for joining us today.