As promised, this is part 2 of Naomi Hostetler’s articles on special needs. She gave me permission to edit, so I shortened some paragraphs and added a few from friends who chimed in on the conversation. I hope this informs and blesses. I know I have read articles like: “10 Things Well-Meaning People say to Grieving Parents” and felt stricken that I had said hurtful things without meaning to. Neither Naomi nor I want you to feel that way. This article is compiled from the insights of 8 different women who care for special needs children. Personalities vary, and people have different struggles. I think if you read through, you will see a common thread. Be there. Listen. Help in any way you can.
****************************************************************************** Caring for the SN Mama
Some mamas send their children off to school by giving them a hug and sending them down the lane. Others put them on the bus with medical equipment and medications. Some mamas take care of baby’s needs by doing a quick diaper change and giving him a bottle which he falls asleep holding. Some mamas do a bowel routine and feed through a feeding tube. Some watch their ten- month old pull himself up and take triumphant first steps. Some mamas watch their five and ten-year-old fight determinedly for that first step. Some let their five-year-old child run into the store beside them and some carry their child. Some say their children are “into everything” and some wish their children could be.
A common thread among SN Mamas is this: They do not view themselves as super women, even though to an onlooker the added responsibilities of numerous appointments and therapies look overwhelming. You may be surprised to hear that comments such as “How do you do it?’’ and “God only gives special children to special parents,” can serve to make them feel distanced and frustrated. They don’t feel like super-women any more than you do. God has called each of us to different journeys in life and in each path, He has placed different hardships. Each one is given the strength daily to face whatever our Hard Thing is, and few SN Mamas like to be distanced to that plateau of The Hardest Thing. They are doing what is best for their child at the moment. Just as you would.
One of the biggest gifts you will give a SN Mama is the gift of grace and acceptance. Don’t be offended when she turns down the invitation to a coffee break, birthday party, or girl’s day. Sometimes there isn’t enough mental and physical energy for everything, and something must go. It’s hard for her to chat lightly about recipes and dress patterns when there is a current decision weighing heavily on her mind or a surgical procedure she is steeling herself for. Keep inviting her, even when it seems she never shows up; she needs to know you didn’t forget her.
It is not especially helpful to pat her on the back at church and say, “You are doing so well,” then go your way without taking the time to actually hear how her real life is going. She does not want to be self-focused, so she will likely not tell you honestly unless you ask. Stay involved. Know enough about what happens to know how and when to offer help because even small things can be huge. When she is feeling overwhelmed, sometimes the best thing to say is, “I have two hours. What do you have for me to do?” Offer to babysit, hire a maid for her for a day, send freezer food, make her dish for carry-in during an intense week, or offer to do her laundry. Pray for her and tell her you are praying. Drop a coffee off or a vase of flowers and a hug. Many families spend a good deal of time on the road with appointments, etc. and a practical way to show you care is to bless them with gas money, restaurant gift cards, or cash.
In cases where it is possible, learn to give the needed care to a special needs child so that his Mama can confidently leave him with you and get away for a space. If you know her to be a social butterfly, plan a tea party or brunch with her and her friends and let her know all is cared for. If she is the quiet type who values personal space and time alone, give her a babysitting coupon and some cash and tell her you will be here for XX amount of time. On the other hand, be understanding if she refuses but don’t stop offering.
Be conscious of special diets, weaker immune systems, etc. especially when inviting the family to your house. Be kind enough to let Mama know that you’ve had the flu bug lurking in your house, and that your four-year old is coughing. For some children, a cough is life threatening, especially if accompanied by a cold. Prevention is the cure for much of Mama’s weariness and she will be most grateful for your thoughtfulness. If there is a special diet that is needed or even appreciated, do your best to accommodate them and let her know what you plan so she doesn’t need to bring prepared food along for her child.
SN Mamas tend to feel disconnected from other ladies who have fewer stresses on their strength. One of the things that widens the gap is when ladies sit around and discuss complaints from their everyday lives that would seem like a dream for her. It will be hard for the SN Mama to understand why you are complaining about giving your child a round of antibiotics that will mess up his gut health when she has seen her newborn survive a nine- hour surgery that she knows saved his life. That surgery was followed by enough antibiotics to drown an elephant and she knows she owes her child’s life to the medical knowledge she was able to utilize for her child’s wellbeing. She will struggle to know how to respond when you bring your newborn home twenty-four hours after a natural delivery and complain about sleep schedules and family life being disrupted. She remembers nights in that hard hospital chair by her baby’s bedside, willing away the wires and tubes that kept her from cuddling and snuggling the newborn softness and longing for the comforts of home.
Occasionally a person of faith will say insensitive things like, “Have you ever prayed for your child to be healed?” That can actually sting, coming from fellow Christians, indicating that the SN family might have inferior faith. Of course they have prayed that their child would be healed! That’s the first thing they did, through their tears, down on their knees beside the precious baby who was just diagnosed with his condition. And they kept on praying until they had peace in accepting what God in His sovereign wisdom allowed, and trusted that God has a special plan for the life He designed.
Along these same lines comes the unsolicited advice, the internet cures from people who have done a google search and now know more about your child’s condition than their doctor does. It is very painful if to get the feeling that your child is being researched, toted about and displayed like a specimen. Probably it is best not even to use the term “normal” unless you are discussing the weather. If you overhear someone saying hurtful things, kindly clue them in. That will be less awkward than a snarky comment from the mother of the SN child, but they certainly have a collection of things they would often like to say. SN Mamas need your support much more than they need you to fix the “problem” with their child.
“I know just what you mean.” This comment is likely one of the top three (the other two: “Is he normal? and “special children for special parents”) that should be used most sparingly with a SN Mama. If you have not walked their road, you actually do not understand all the emotions, energy, and stamina her life requires, and she knows it. However, this does not have to distance you! Listen gently without judgment. She does not fault you for not having experienced it, but please do not say “I know just what you mean” when you don’t.
Be understanding of the fact that a special needs child has changed your friend’s life dramatically and may in turn change them. As in any relationship, keep communication honest and be willing to hear that your good intention may have hurt deeply. They need you now more than ever, but it is hard to always know how they need you so communicate about it honestly. Do not withdraw from their lives simply because you “don’t know what to say.” Learn to know the new person life has made them and be there! Maybe you will find her with a different set of friends whom she can identify with now because of her child and you find you cannot identify at all. Be accepting. She needs their support as she navigates this pathway, but she still needs you as well!
The journeys we are called to undertake and the “normal” that we embrace vary with each person on earth, yet they need not alienate us from one another. Let’s learn to love well together, shall we?
Thank-you, Naomi, for taking time to research and share.