Last month, I wrote this post asking parents of children with special needs to answer a question about what parenting in their everyday lives is like. My goal was to promote understanding and awareness, because parents with special needs children often feel like “people just don’t get it.”
This is the question I asked:
Parents, please answer this question:
If you could say anything to people about what it’s like to parent a child with special needs, what would it be?
Parents were generous in giving their responses across social media, on blog comments, and via email. Thank you, parents.
One of my topics for speaking engagements is I Didn’t Sign Up For This: Hope For Special Needs Parents, and I’ve also begun speaking on the topic How to Minister to Special Needs Parents.
I’ve created this handout which I use for both speaking topics, and this handout has many of the parents comments, too: The Voice of Special Needs Parents.
While this is a longer blog post, I found it so helpful to read these comments in the words of parents in their entirety.
The Voices of Special Needs Parents
What We Wish You Understood
Here, in their own words, are quotes from parents of children with special needs:
“Please talk to my child. I don’t know how he feels or what is going on in his mind. He does have a voice, and if you sound like you care about him, he will use it.”
“I hate when parents say they admire me….it makes me uncomfortable. I do what any patent does for their child, I care for his needs and love him, just like I do for my son without special needs. I am a parent.”
“My child matters and is worth it.”
“Different isn’t bad, different is just….different!”
“Be patient.”
“This is what I always say. ‘Motherhood itself is a full time job, having a special needs child is another full-time job on top of that.’”
“Please stop saying I am a saint and ask me what you can do to help instead! I NEED it, and seriously, if someone sincerely recognizes that this is hard, I will know that they get it if they come and fold the laundry, or help me make dinner once a week.”
“I would start off first by saying this isn’t normal? This is my normal. We all have our own normal. If you’re going to stare at least ask a question. That makes staring seem less rude to us. We spend a lot of time at doctors and hospitals. We are doing the best we can for our child. So don’t offer medical or behavioral advice. We have a routine we need to stick to. So we are not ignoring you or neglecting our friendship. Please please call us and check on us. We would love adult conversations. And my biggest issue is that it is not ok for you or your sick child to be around mine. He is medically fragile and if he caught something it could kill my child. Hope this helps.”
“Some disabilities can’t be seen. Maybe the kid having the meltdown is Autistic. Would you be able to tolerate being trapped in a room with someone scratching their fingernails down a chalkboard over and over? That’s daily life for my child.”
“Be a friend, recognizing that sometimes our activities are limited because of our child. But mama needs laughter and love, too! Don’t stop inviting me places!”
“Don’t whisper and stare and make useless comments such as, “If that were my kid, I’d beat his ass,” or “What a spoiled brat.” He’s an idea, sympathize and ask how you can help. “
“We hold things back; others aren’t always seeing the full extent of the challenges we face. Love and grace are sunshine to the soul, and sometimes crucial for getting through the day.”
“Please don’t tell us ‘stronger discipline’ would straighten it all out.”
“IF I make it to church, help me as much as you can. You can’t believe what it took to get here.”
“Amen about church attendance! I’m always late no matter how early or how hard I try to get there. The Lord blessed though because finally some other people have always welcomed me with a smile.”
“I feel like a nurse most of the time. I get the weird looks when I ask if any kids have a child or been sick before they come over around my special child. They think I’m overreacting when really I’m just taking precautions when I can be in control of certain situations. I wouldn’t get offended if they said they didn’t understand and asked questions.”
“If someone else is offering help, don’t criticize them for what they offer. It is OK to make a counter-offer or co-offer that you think more appropriate. The parent or guardian will take the offer they need, and can turn down unwanted assistance for themselves.”
“Very few places are handicap accessible. Even if they are, the accommodations are not meant for 2 handicapped children with medical needs. It takes me 4 times as long to pack to go somewhere. I always need another hand so spontaneous trips are out of the question as well.”
“Here’s what I want you to know about true acceptance: It’s the difference between talking to my child because she is in a wheelchair and getting to know her well enough that you no longer see the wheelchair.” – Lisa Bonnema
“What I want is people to not say ANYTHING when my ASD child is having a meltdown. Please no advice, no sympathy, no comments of any kind. Nothing you can say will make me feel better about the situation.
Now, I have had people offer to help me, which is embarrassing, but sometimes I have to swallow my pride and accept help. You want to help me pry my kicking screaming child off the swing? Well okay, let’s do this. You want entertain my other toddler while I handle his sibling’s meltdown? Please.
Also, please spare me the stories about your friend’s son’s friend, or other distant acquaintance who has autism. I appreciate your attempt to relate, but you have no idea.”
“It is OK to ask if I need help. It is not OK to tell me how to parent my child. This goes triple about suggesting I hit him, yell at him, or “put him in timeout.”
It is OK to ask about autism. It is not OK to suggest I do something to ‘cure’ him, or tell me about the latest fad woo you heard about.
If it is rude to do something to a non-special-needs person, it is likely rude for a special needs person. Staring is rude. Making ugly comments is rude. Muttering under your breath about someone is rude. Using derogatory terms to refer to someone is rude.
If someone else is offering help, don’t criticize them for what they offer. It is OK to make a counter-offer or co-offer that you think more appropriate. The parent or guardian will take the offer they need, and can turn down unwanted assistance for themselves.
“I have a child with no obvious signs of a medical problem. I would tell people that we still have extra layers of ‘analysis’ (for lack of a better word) that we have to go through for every single decision – school/not yet, distance to travel, emergency letters and backup meds, expose to people who might be sick, skipping events, finding extra-competent childcare, always scouring the area for places where we could potentially eat in case a trip takes longer than planned or something comes up (and there have been plenty of times when the answer is nowhere). I went on a trip last summer that took longer than planned. The other kids got hungry and the mom was most concerned about finding a place where her kids would eat. My thoughts were “my kid’s needs override yours” (which I didn’t say – we just dug into the cooler sooner), and I realized that there’s a kind of care-competition that is hard to communicate. Regardless of the issue of the moment, there’s never really a time off from hyper-awareness and “analysis.” It’s 24/7 and can be really tiring and frustrating.”
Be practical and pragmatic. If you have a friend with a special needs loved one, offer things you might like done if you were tired, very busy, and overwhelmed. Offers for cooking, cleaning, and respite are usually very welcome, even if they are refused. Offers for just listening and hanging out are usually very welcome, even if it never happens.”
“See the way you’re staring at us right now? It’s okay….everyone else is too”
“Yes, he does have two heads…and they simultaneously rage…careful now…don’t get too close…He might bite…no really..he bites”
“Yes, I’m sure if I only spanked him more he wouldn’t have meltdowns”
“No…autism is not contagious”
“I’m not a terrible parent by ignoring this meltdown…I suppose the 3,978th meltdown just isn’t as loud as they used to be”
“yes…that’s my kid!”
to the horrified toddler parent on the playground…
“I know my 8 yr old child is four times your baby’s size… And you think he is mocking your tiny toddler with his baby talk…honestly.. He is just trying to relate to his peers”
“There are a couple of reasons that it appears like there are more children with special needs. The biggest reason is that more diseases are detected and treated. More children died because of health issues. Also children were institutionalized more. Mainstreaming is a relatively new concept. 30 years ago kids with special needs went to special schools.
Please offer to help. People with children in the hospital need help! Make sure that they have someone to watch other children. Offer to drive siblings to school or sports practices. Make meals for the family. Gift cards for restaurants near the hospital for the parents are terrific. Just listen to the parent. Or say I am here for you (and mean it). Do not tell a parent of a new baby with a diagnosis how sorry you are. In hindsight we know you mean about the diagnosis but it feels like you are saying you are sorry the baby isn’t perfect. In our case, parenting a special needs kid is a lot like parenting any other kid but with medicine, shots, and a lot of therapy. It is our normal. Most days are fine but sometimes reality hits. The realization that my kid can’t see me across the room sometimes hits me like a ton of bricks. Be kind is my advice.”
“Take today for example – Easter Sunday. Everyone else’s children have Easter eggs galore yet because my Son doesn’t I’m made to feel like some kind of terrible parent depriving their child! Fact is my Son not only has GA-1 but is lactose intolerant and the shops here in Scotland don’t exactly have the widest range to cater for him. Instead of other parents judging each other perhaps they should stick to parenting their own children! Little do they know that every single meal and snack has to be carefully considered, protein and lysine counted. The battle to have your child eat a full meal and the constant worry about their weight and health in general. Sorry to rant but feeling annoyed today!”
“Being a parent of a child with medical needs, I sometimes feel like more of a nurse than a mom. He has to be carefully managed everyday to keep him on track. Food, naps, activity, bowel movements, and medications are all tracked so I can make sure he stays healthy. It can be rough, but it’s worth it. We plan our days around him and make sure we don’t do anything that might throw him off metabolically.”
“I do feel like a nurse and people don’t understand just how serious my sons condition can be. It does take me longer to pack to go anywhere because I need to estimate how long we,will be gone. How much food and which medications to take with me. I am finding this to be something that is odd to me. Most shopping places have bathrooms, but I don’t want to have to feed my child on a changing table and the floor of a public bathroom is out of the question blanket under him or not…no. And yes I have been told to go to the bathroom to feed. What is a parent with a tubie to do. Where do we feed our baby’s? I have been looked at like a crazy person because of needing to do a bolus feed. We all need to eat his is just different.”
“Mom, dad, nurse, play partner, run the house, bathe, make formula, people stare, I smile back, if they have a less than desirable remark, I respond, ‘ If you have children be thankful they are healthy and one moment in my shoes and you may find the compassion that is hiding in your heart.’ Our outings are never more than 2 hours, I make sure that he has been fed, used the bathroom, and nearly ALWAYS we are home for feeds and bathroom. Maybe twice a year we have a special occasion that we do a feed ‘out’, but hurry home for bathroom time. My son is severe, the only case of PA in the state of Hawaii, now 21 years old and our genetics, nutritionist, and endocrinologist are all on another island, (type 2 diabetes diagnosis last year). Thankfully we have a neurologist on island and his pediatrician still sees him! But guess what, WE ARE BLESSED BEYOND MEASURE ~”
What have you learned from reading these comments? If you are a special needs parent, do you have another comment to add?
Sara, you have provided a template for people to just voice frustrations, concerns, and heartbreaks/joys concerning the lives of their children…and their own. That’s rare. Parents are always feeling judged, whether by other parents, schools, doctors, or even family. I used to be a people person. I used to love going out. I turned into someone that shy’s away from groups or gatherings, hating to be outside of the home and making nonsense excuses to just not go somewhere (unless I totally have to). That’s not healthy, I know that. But, I wonder sometimes….am I alone in thinking that “is this God’s plan for my life?” I was raised in a Christian household, and raised in a family owned business designing flowers. I’m not supposed to resent that my life feels empty, like I haven’t made my mark or contribution to this world. Because of my upbringing, I was also stuck into the role of caretaker at an early age. Looking after my brother, eventually my grandma when she got sick, again when my other grandma started hospice, and now my grandpa lives with me as I take care of him and his needs. All the while, taking care of my kids…going through a divorce…trying to juggle work vs. hospitals…burying both my parents…a huge rift with siblings…and finding love again with a wonderful man who understands me and the chaos of my life. All the while keeping my head held high, and pushing forward. But is this it? What lesson is God trying to teach me? I sit back, and wonder what is next? What legacy am I leaving in my wake?
Lisa, of course I don’t know God’s reason and God’s plan, but you ask about your mark in the world — I see it in all you have done, in what you have written. Look at all the care you have given. It’s incredible! Wow. Be sure to find ways to take care of YOU in all of this. I know it’s very, very difficult for those of us who are caretakers. It’s easy to somehow continue feel like we have to choice but to give and give until there is nothing left. ((HUGS)) and love to you!
Lisa, thanks so much for writing. You have really big challenges on your plate with two children with vastly different needs. And 36 different surgeries, oh my goodness. Wow. I do know what you are saying about smaller surgeries becoming like old hat. You are a rock star mom!
Matthew, thanks for your comment.
Liz, thanks for your comment about your daughter. You bring up a really good point about allowing her time to comment, and slowing down the pace of life. That is one of the benefits and joys of parenting a child with special needs. In some ways it does slow down our life. It makes me sad to think of your daughter’s loneliness. I wish I could reach out and give her — and you — a big huge right now! xoxoxo
I was blessed with 2 children, both with different special needs. My oldest was labeled as EI (for those not understanding, that’s Emotionally Impaired), my daughter who was born with Meylomeningeocele Spina Bifida had multiple impairments (36 surgeries in 18 yrs.). Ya know, my daughter was the easier of the two. With that being said, yes I do feel like a nurse..a mom..a caretaker..etc etc. After so long, you go numb to everything going on around the rest of “your life” that doesn’t take priority over the needs of your kids. Most “normal” parents start crying if their child has to get their tonsils out (and I really don’t mean to down play their turmoil, but seriously….36 surgeries!!). You categorize them by OMG serious, to “eh, this will be a cake-walk.” Friendships, even with other parents who have special needs kids are difficult to maintain. Families, don’t always understand. Employers, don’t understand. Schools, doctors, therapists, surgeons, hospitals, and counselors…that’s what my life has been. And that’s all I know. Now, that my kids are finally over 18…my work seems like it’s just starting over again. The concerns are not just schools, and doctors anymore. It’s trying to help them find their place in this world. With jobs, or schooling. Or my biggest worry, who will look after them or care for them when I’m gone from this world? People who don’t have kids with special needs don’t understand, and could never imagine the heart break…or the joys of being blessed with “our special children.”
I would add for my daughter: give her time to answer your question. Don’t interject and project your own answer for her because the time she is taking to process what you have asked is making you uncomfortable. Its okay to slow down in life- in fact, its healthy! And yes, she is 100% human – which includes all the emotions, dreams, needs, and concerns that comes with. She does cry herself to sleep at nights sometimes because she feels lonely!
I loved this. Thank you for sharing.