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. 

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 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?

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Thank-you, Naomi, for taking time to research and share. 

This article was compiled by Naomi Hostetler, a young lady who married a former second grade student of mine, which makes me rather old. I am very pleased that he found such a thoughtful wife. 🙂 Naomi loves and helps to care for a special nephew, and this subject has been on her mind a lot. I have added a few paragraphs from my own circle of brave acquaintances and I’ll tell you that I cried when I read their honest words. It is why they are all anonymous, so they can say it like it is.

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The following is a result of five kind mamas who shared their time and thoughts with me as it pertains to caring for their special needs children. My only wish is to help advocate for these children among those whom it is sometimes hardest to speak honestly to on a delicate subject- the ones closest to us. Let’s learn together, shall we?       

There is many a disabled child who longs to keep up, to run to the swing set, to run up and down the steps, to master difficult mathematical concepts and to be accepted as one of the flow. Their sense of self-worth is often more fragile because of the differences in their lives from what they see in their peers, and it most crucial to do our part as families, friends, and teachers to help them realize their value as a creation of the Master Craftsman.

The SN Child is in fact, first a person. They have their own personalities, likes, and dislikes. A child’s disability does not define him, hence do not go about introducing them as “This is ________, the ONE with ______.” It is painful to be used as a showpiece, and one must be sensitive to the reality of making the child a celebrity because of his disability. Yes, this disability has changed their lives and yes it is part of who they are, but it does not need to define them. First, they are a person.

You will forestall much pain in the hearts of an SN Child and his parents if you think before you speak. “Is he normal?” Really? Who says what is normal? “At least he/she is cute!” And there is nothing else to offer? “He seems smart.” Seems? “How can you stand to watch him face this, (do her bowel routine, struggle through the therapy programs, etc.)?” How would you stand it? “Why does he need a wheelchair/walker, etc?” Every mama would protect her child from rude remarks, but when their child has an extra high mountain to face in the road of acceptance or dark times of physical pain, rude remarks tend to feel amplified. Just think about it. Would you like to hear it? Would your child like to hear it?

The most significant rule in caring for the SN Child is one we all know well- The Golden Rule. Put yourself in their shoes (or try as best you know). Children want to be friends, not freaks. Always assume competence when you are in the company of a disabled child, and leave the baby talk for that respective age group. It makes a conversation more comfortable to look someone in the eye when you speak to them, so don’t hesitate to get down on their level and then ask them age-level questions about what they’ve been doing. These children have lives other than their disability and they deserve the chance to talk about it! Personal questions that may be embarrassing to them such as questions about physical appearance, feeding tube, diapers, etc. are not okay. Here again, the Golden Rule covers so much. Would you be liked to be asked this question?  

There are many ways your children can play with handicapped children, and your effort in intentionally teaching your children about this will bless not only the child but also his mama. A child who relies on a wheelchair/walker for his independence can be made to feel as much a part of the social circle as the child who runs on two sturdy legs when there is a deliberate attempt to integrate them. It can be very small kindnesses, like guiding the slow paced one to where the crowd is going, at least stopping to say hi, or playing a game that the physically challenged can participate in, which might take some forethought. Often children run off with their friends and are scattered far and wide, but you can help your child to reach out to a SN child. Encourage them to not give up easily when the interaction feels awkward.

Maybe you are inviting a family with a disabled child for a meal. This child walks with a walker and finds the steps in your three-story house difficult to navigate. Have a little forethought, and he will feel much more welcome and much less like a nuisance. Put some toys that he/she will love on the main floor. If the child is old enough to appreciate the social interaction, have your children play indoor games for the evening instead of playing hide-and-seek outside after supper. Board games that can be played on a table which is an easy height for the child in the wheelchair, or games that can be played sitting in a circle. If the child is one who doesn’t care as much if he/she has other children playing with them but needs to be entertained, tell one of your teenage daughters to give mama a break after supper by showing them books and keeping them happy.

 The SN Child’s equipment to him is not a fun accessory. It is an absolute necessity. Anything with a handicap tag is very expensive and fooling around with something that is not yours to use is inconsiderate. Teach your child to play with the child in the wheelchair, but not with the wheelchair. Explain to them that this child’s wheelchair/walker is the same as his legs and would he like if someone played with his legs so that he couldn’t walk around? It isn’t kind or respectful. Don’t let your children push equipment around, even when not in use. To a child who depends on this for mobility, he is stranded without it. Many wheelchair/walker users tend to quickly feel vulnerable in a crowd. Don’t let your younger children push him around or “give him a ride” without consent because when other stronger children push them around it is very frightening. Please judge gently when the child in the wheelchair screams over being pushed about. It is likely not so much an attitude problem, as a feeling of lack of control and pure terror. Their equipment is personal space and is not a toy, and it only respectful kindness to acknowledge this.

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This article is not to scare anyone away from getting involved, but simply to inform us all of ways we can genuinely help carry burdens and share joys. Sometimes we are paralyzed for fear we will do or say the wrong thing. Genuine care expresses itself in love, and that is hard to misunderstand.

The next article is about caring for the special needs mother. I am sorry that some posts simply don’t show a comment option. I am not sure why, but I would really love to hear what you have to say. If you cannot find a reply option, feel free to contact me at dorcasp8 @ gmail.com. I will forward your thoughts to Naomi, so she can hear your response as well.