I’m Tired of Justifying My Son’s Existence

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Here’s the thing — I’m tired of society making me justify my son’s existence.

Here are some real life conversations I have encountered within the past few weeks:

Conversation 1: Me, complaining about how picky my typical son is when it comes to eating. My friend, commiserated. “Yeah, that sucks, so frustrating.”

Conversation 2: Me, complaining about my disabled child’s eating habits. My friend? Totally different this time. It was, “But he is so, so sweet. He has such a great smile. You are so lucky to have him.”

See what happens there? I’m sure it has happened to many of you. When you say something negative about your disabled child, you are either reminded by others of all the positives, or you are asked to share the positives.

And that is what sticks in my craw — I’m never asked what the positives are about parenting my typical child. When I am venting with mom friends (or anyone, really) about him, no one ever says, “Well, surely it’s not all bad! There must be some good things!”

Right? Because with typical parenting, you take the good and the bad.

But, with parenting a kid with a disability it’s assumed it’s all bad unless stated otherwise. *YMMV, your mileage may vary.

 

This is what happened in my Facebook group: someone doing a research paper for school wanted to share the challenges of parenting kids with disabilities. Fair enough, and she got lots of responses to work with. (I considered deleting the original thread, only because I feel it’s rude to treat parents of kids with disabilities like some type of specimen or science experiment to be studied…but I let it go since many parents felt comfortable responding).

She got a lot of responses, then a few days later, followed up with: “I had a classmate suggest I add to my paper how children with disabilities make our lives better. I agree I don’t want to just talk about the struggles. I also want to highlight how these kiddos brighten our days.”

On the surface it seems innocent enough, right? And I have no idea if said classmate is also a parent of a child with a disability or not. But the message is there: If you do not tell us there are positives in your life with disability, we will assume it’s all negative. We’re not allowed to talk about the struggles unless we balance it with some positivity, right?

For this specific thread in a group, perhaps I am reading into it too much. But, overall, I stand by my assertion this is something that is often expected of us who have disabled children — you have to remind us of the good things. I’m not asked that of my typical child.

For those of you who have both disabled and non-disabled children, really think about this. Think about how often we are asked to justify our kids’ existence. No one ever says to me about Brian the things they say about Kevin. With Brian, he’s allowed to just be. People assume with parenting him, there are ups and downs, good times and bad…and just roll with it.

With Kevin, notsomuch. You know what? Parenting is hard, disability and regular. Sure, having a disabled child brings with it different and more challenges that other parents do not have. But why do we assume those extra challenges all but eliminate all the good things about parenting? Why must we constantly tell you our bright spots?

The bright spots are there. I see them. Lordy, believe me I see them. I don’t need to be reminded, nor should I have to remind you, that parenting a disabled child is not all bad. I know people are just trying to be nice…but just stop for a moment and ask yourself, “Would I ask them this same question about a different child?”

Kevin’s entire personality isn’t built around his conditions. He is who he is because that’s who he is. My guess is he would be the same sweet kid even if he ate everything I put in front of him and didn’t have multiple seizures a day. His sweet personality doesn’t necessarily make the negatives of his disability (seizures) any more tolerable.* By the same token, Brian has a really sweet personality, too. Meal times are still a nightmare around here due to his picky eating.

Yet I’m never asked how “he makes my life better.” I’m never asked to quantify or justify his existence. I’m never asked to share how Brian “brightens my days” yet with Kevin, it is expected of us. Often.

We do have extra struggles. It is hard. But our kids are just kids, first and foremost. And to assume they bring nothing to the planet besides struggles is a real shame.

I know there is a person in my Facebook group who is likely to feel personally targeted by this post. Note to that parent: Please don’t. This is not just about you, and has been a long time coming. Your question was merely the proverbial straw on the camel’s back.

A version of this post appeared on A Day In Our Shoes

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Things I Don't Want to Hear as a Parent of Kids With Disabilities

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Parents of kids with disabilities often hear hurtful or thoughtless comments, here are things parents of kids with disabilities do not want to hear.

Read the full version of 15 Things I Don’t Want to Hear as a Parent of Kids With Disabilities.

Read the full transcript:

Things I Don’t Want To Hear as a Parent of Kids With Disabilities

“God gives special children to special parents.”

“But she looks normal!”

“That child just needs discipline!”

“I’m sorry.”

“He is taking too many medications, that is why he has problems.”

“She’ll grow out of it.”

“I could never do it.”

“My kid does it, too.”

“Didn’t you know before birth?”

“It could be worse, at least she can walk.”

Parents, your feelings are valid, and you know your kids best.

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What Pictures Not to Post Online of Your Child With a Disability

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As parents of children with disabilities, we have a complicated job. Social media can connect us easily to others who “get” our path and we get comfortable with sharing the good and the bad, the ups and downs, the heartbreaks and triumphs.

But, there’s something we have to ask ourselves before we share certain pictures of our children. And I’ve seen this issue increase across groups and news feeds where people want to show “the hard side” of parenting a child with a disability.

There’s one, big, simple question to ask:

Does this promote dignity and respect for my child?

Please, fellow families, please take a moment and pause before you post the picture of your child laying in their own bodily fluids. Please remember while bathtub pictures are embarrassing for teenagers to reflect on, pictures of children covered in feces or vomit takes it to a level that does not promote dignity.

Would you like the same posted without your consent?

Your narrative of struggle and heartache is valid. But please, please remember a picture is worth a thousand words. Make sure those words aren’t those that cause more heartache to you or your child.

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What Life Is Like After Having My Son Fight for His Life in the ICU

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For me, life after having a child in the intensive care unit is nothing like life before.

Of course, when you bring home your first newborn baby you might feel scared. That’s expected. Will I be able to handle the sleepless nights? Will I be a good parent? Am I doing enough? Am I enough? These are all fears many parent have, but after you experience something so devastating as watching your baby in an intensive care unit fighting for his life, those fears become worse, much worse. The biggest fears you had before have become your reality. The fears you had prior to your ICU stay become minute in comparison to your worries now.

You watched your baby almost die! A warm stream of tears drip down my cheeks just thinking about it. Typing the words makes me feel sick to my stomach, but it’s the truth. It’s your brutal reality. Your child, the child you are supposed to protect, got sick. Very sick. So sick you had to come face-to-face with the most heartbreaking, stomach-sinking, helpless-feeling reality you’ve ever encountered…you could lose him. What if I lose him? How on earth could you ever possibly go on? Those thoughts are short lived because you, as his mom, have to stay focused on his recovery. There’s no time to waste on feeling sad and sorry for yourself. You have to stay positive and push forward no matter how hard it is. Not only for you, but for your family. Your husband needs you. Your baby needs you. You feel you have to be the rock they need. Of course in the middle of it you don’t know that’s what you’re doing. You just do it.

Upon your much anticipated return home:

Leaving the hospital is one of the most exciting and terrifying experiences I’ve ever had. You’re obviously happy to have your child healthy enough to return home, but with that return comes much responsibility. In our case, we had to schedule a meeting with a nurse to teach us how to administer antibiotics intravenously through a peripherally inserted central catheter (PICC line). We also had to be home in time to receive medications from a delivery service as his medications needed to be refrigerated and were delivered in a cooler. We received boxes and boxes of medical equipment upon our arrival. We essentially became our son’s nurses.

Our fears have multiplied immensely. Will my son have a seizure? What if he has one while he’s sleeping and I don’t know? What if I forget to give him is meds? Am I capable of administering antibiotics through this PICC line that goes directly into his body? What if I miss a step? What if I don’t get the line clean enough and I make him sick again? Will my son recover from this? Will we recover from this as a family? Will he ever walk? Crawl? Read? Play sports? Will other kids pick on him and call him names? You might begin to think you’re losing your grip. Am I worrying too much? Am I overthinking things? Everything you used to see as ordinary and not even give any thought becomes an ordeal.

People stop coming around. In the beginning of your ICU stay you might be overwhelmed by all of the people reaching out in different ways. Some people send cards or gifts, others send gift cards. Some send messages through social media and it is damn near impossible to keep up and message everyone back. Many of your responses to the messages might simply say, “Thank you,” or go unintentionally ignored. You probably won’t have the energy to give the thoughtful response you’d like to give. But once you’re home and a couple weeks go by, the phone calls might start to fade and the visitors disappear. I’m not sure if it’s because people believe you’re all good now that you’re home, or if people want you to have your space to get settled back in, but the help, encouragement and check ins…they seem to fade away. It might leave you feeling more lonely and afraid than you ever had before. Don’t get me wrong, people still check in and ask how everything is going and I am unexplainably appreciative of that. What I am saying is, there might be much less of the support you had become accustomed to and it is a huge adjustment.

Reality hits. You begin to process what has happened to your family once you’re home and things quiet down. When you’re in the hospital the nurses take over the care of your child — from changing the baby’s diaper to helping bathe the baby. You begin to feel like it’s not even your baby. Now that you’ve returned home and the nurses are no longer there to help, it’s again your responsibility. It’s not that you want it to be or expect it to be someone else’s responsibility. You just might feel like you’re a brand new mom to a different baby and need to get acclimated to it all.

You might obsess over every little milestone. I can’t tell you what a “normal” mom goes through as their baby reaches different stages in their development or certain milestones because my experience is far from “normal”. But I do know what happens to a mom whose child goes through a traumatic event and she’s told her son has significant brain damage. You are expected to wait (on pins and needles) to see what exactly your son’s needs are going to be. My son is not an average kid (whatever that means). He’s not just a kid “who’s doing things on his own time” or at “his own pace.” It’s so much more than that. He has brain damage. No doctor, specialist or therapist can tell you what his (or your) future holds. Yes, they can make predictions, but what his future  truly holds no one actually knows. I understand people who say he’s going to do things when he’s ready, or on his own time are just trying to help take my worry away, and I love them for that. But in all honesty, the worry will not go away. Those worries are undoubtedly going to be here for a long, long time.

You miss the care and security of being in the PICU. Do I wish to go back into the PICU with my son? By no means. But when you go through an event such as this, you become fond of the sense of security you develop over your time in the ICU when you have doctors, nurses and machines monitoring your child 24/7. Returning home was the most  terrifying thing in my life. My husband and I were obviously overjoyed to have our son healthy enough to come home and not need to be monitored 24/7 but now it’s all on us again. Every sneeze, every breath, every move scares us. We question everything and fear the worst. Are my hands clean enough? What if he stops breathing? Do I know what to do? Can I do this?

 

You might blame yourself. In my situation, my son became ill from a bacteria I tested positive for. Whether other ICU parents’ cases are similar to mine or different, they probably still find themselves to blame in some way. No matter how many people tell you it’s not your fault, you did everything you could or that you caught it early — you might still blame yourself. You hurt so much and you’re angry. Really angry. Why didn’t I ask more questions? Why didn’t I do more research? Why didn’t I know the signs? If I had found the answers to these questions would he be in a better situation than he’s in today? Would he be crawling? Walking? Saying more words?

You might lose yourself. Becoming a mom poses it’s own challenges when it comes to keeping your sense of self or keeping your identity as an individual, but when you have a child with disabilities the challenge is considerably greater. Your every waking moment is structured around the needs of your child. What therapies do we have today? Doctor appointments? Do I have enough time between therapies to shower? And in my case, I left my career to be with him and provide him with the best care possible. I do not regret this decision to leave my work but I do miss it.

What we need from friends and those who support us:

We need you to listen.  Allow us to talk about what happened. If we are talking about it, it’s likely we are ready to. We understand it hurts you to see us hurt and we appreciate that you want to protect us. But, for some of us, talking about it actually helps us process it all. Over time, sharing our story helps us become less sensitive to it. For me, it is therapeutic to share our story as spreading awareness has become my mission in life.

We need you to stop trying to fix our thoughts and feelings. The way we feel is exactly that. We don’t need you to change it. We just need you to allow us to feel it and to work through it. If there was an easy fix or if it was possible to make it all go away with a few conversations and pep talks I’d say “Sign me up!” but it’s not, so let us process it our way. And by talking about it, we are not dwelling on it or holding on to it. Nobody wants to feel this, nobody.

Check in. Ask us if we need help and when we say we are OK (and we will) insist on helping. We put on a face of determination and strength for so long we forget how to turn it off. We don’t know how to accept help. Accepting help means we are struggling, and who wants to admit that? It means we have to set aside pride and show that we’re vulnerable and imperfect. Few people want to admit they need help. But we do need help. We stand together with our little warriors and fight relentlessly for them and push through the tears and resistance in hopes it will pay off and our children will persevere and push through the countless obstacles they will undoubtedly face. And we are tired.

Make us laugh. “Laughter is the shortest distance between two people.” You will never truly understand what we have endured or what we endure daily and that is OK. We would never want you to. But by making us laugh you are showing us life is good. Life goes on. Laughter can be the simplest most powerful therapy you could provide for someone in pain.

Just love us. Love us for who we are and who we have become. Trauma inevitably changes us. Tell us you care. Tell us you love us unconditionally. Tell us you’re there for us and love us for who we are; no matter where on this emotional roller coaster we may be.

We want to hear your story. Become a Mighty contributor here.

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Being a Mom Is Not Easy, But Talking to My Doctor Made It Better

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There are so many tips, tricks and words of wisdom about motherhood that people will try to impart on you. There’s one thing I wish everyone would have told me prior to that I had no idea about: you might feel miserable in the first month. It might not be “the best time of your life.” You might feel like you hate it.

I cried. I cried a lot for the first month. Along with the crying came the guilt. I felt guilty I wasn’t getting this mom game like I thought I was going to. I felt guilty my husband was coming home to a total mess of a human being every day. The guilt wasn’t helping the crying and vice versa.

I’m pretty in tune with my mental health and I knew something wasn’t right (I have a history of anxiety and depression). I wasn’t eating. I was crying all the time. I was having some pretty terrible thoughts about myself and my lack of mom-skills. I was surviving (barely), but I wasn’t thriving.

Breastfeeding was wearing me out. My babe was born three weeks early via c-section and wasn’t strong enough to get a great latch. She wasn’t really getting what she needed from me and therefore, my body stopped producing as much milk. The lactation consultant encouraged me to pump and I was getting close to nothing when I pumped for 30-45 minutes. It was a vicious cycle. I pumped. Hubs fed the babe. Two hours later, we would do it all over again. I felt like a failure because I couldn’t feed my baby. Everything I had read made breastfeeding seem so natural and like it was just going to come easily. It didn’t.

 

Luckily, my doctor could see I was struggling. One genuine piece of advice for you: be honest with your medical practitioners. If you’re having a hard time, say something. Don’t act like you’ve got everything under control if you don’t. It is so normal to think this whole momming this is hard. It is. Your doctor will help you determine if your struggle is just you getting the hang of not sleeping at all while trying not to break this tiny human you’re now responsible for, or something more. On top of talking to my OB-GYN, I spoke to one of the most wonderful humans I know, who just happens to be a licensed mental health counselor and a mom. Just talking to her made me feel like the weight of the world had been lifted off my shoulders.

Post-partum depression is real. It happens. It happens more often than people are willing to say and it can be life-threatening. No one wants to admit their tiny little miracle is making them feel miserable. That does not mean you’re a bad mom. It means you’re human and you’re going through one of the biggest life changes that anyone can go through. Talk to someone.

For me, the first step was to feed my kid with some good ol’ formula. After this, we were both happier. She started gaining weight and I started feeling better. Fed is best, y’all. Less stressed momma and baby gaining weight equal happy household.

Our little bundle of joy is almost 5 months now and she is, literally, a bundle of joy. I soak up every moment I get to spend with her and I love her more than anything. I’m finally starting to feel like I’m acing my mom game and every day with her is a new adventure. It does get better, people. It does get better. Just remember, nobody gets it perfect. We’re all just learning.

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15 Things I Don't Want to Hear as a Parent of Kids With Disabilities

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In the last nine years parenting two children with disabilities, I’ve heard my fair share of unsolicited parenting advice and, although well-meaning, ignorant comments. Some comments I can brush off easily; for others, I have come up with answers. Some make me practice my self-control and being kind even when I feel like screaming, “Are you serious?”

Some comments come from strangers and I like to take their initiative as an opportunity to educate. I am a parent who does not mind questions and I am glad to help people understand disability. But that is my choice as a parent. One of my daughters has recently asked me to either ignore those people and walk away, or tell them their questions are rude. She is 11 years old and has cerebral palsy, and we are getting to the age where I need to let her lead the way.

For example, when people ask me in front of her, “What’s wrong with her?” She no longer wants me to say, “There is nothing wrong with her, she has cerebral palsy,” followed by an explanation of what cerebral palsy is. We have reached an agreement, and when people ask this, I turn to her in alarm and say, “What’s wrong? Sweetheart, are you OK? Are you OK? What is happening?” Then I turn to the person who asked and say, “What’s wrong with her, what do you see?” Invariably, the person who asked either recognizes their question was inappropriate and apologizes, or they fumble with their words trying to explain they meant, “Why is she in a wheelchair?” To which my daughter has asked me to say, “You are asking for private medical information.”

The most hurtful comments, for me, usually come from family or close friends. Those comments often feel like criticism on my parenting or they invalidate our experiences, like “You let her spend too much time on the iPad, that’s probably part of the problem,” or “All kids do that, stop worrying.”

And although I do believe most people are not trying to be mean (some might be trying to be supportive) when you hear these comments over and over, it begins to feel demoralizing.

We reached out to our Mighty parents and asked, “What are things you don’t want to hear as a parent of a child with a disability?” Their responses reflected the fact that many of us are recipients of the same attitudes toward disability, and perhaps we are a little tired of hearing these things.

1. “God gives special children to special parents.”

We know we are not special; we are ordinary people. Taking care of your child and doing whatever is necessary to help them is not what “special” people do, it is what parents do.

Although opposite of this sentiment, one parent shared the other side of “spiritualizing” disability when she was told, “You are cursed by the sins of your ancestors.”

2. “But she looks normal!”

Some disabilities are invisible. This comment suggests doctors who diagnose the child are incompetent and the parents are misinformed. Just because you cannot see a disability doesn’t mean it is not there.

One mom said she was asked, “Are you sure about his diagnosis? You should ask for a second opinion.”

3. “That child just needs discipline!”

This is perhaps one of the most hurtful comments, as it implies behavior is a result of poor parenting. It’s saying, “You are a bad parent,” when in reality most parents of children with behaviors are spending hours and hours in therapy and interventions trying to help their children cope with their surroundings and sensory input.

Parents in our community have been told, “I would spank it out of them, my kids would never do that.” “That’s your karma.” “You have not stepped up enough as a parent, that’s why your son has so many issues.” “Can’t you control that child?” “If I had your kids for a week they wouldn’t behave like that anymore.”

4. “I’m sorry.”

Said with good intentions, but it suggests disability is bad. It also suggests we got the “short end of the stick,” or a “less than” child. Our children with disabilities are children first. They are loved, cherished and invaluable. This comment shows pity, which reflects a disability attitude that unfortunately is the most common in our society. We are not sorry. We love our kids. Instead, help us celebrate them!

5. “He is taking too many medications, that is why he has problems.” 

Here is the thing: if a child is taking medications, it is because they need them. That’s all there is to know and all that matters. Personal opinions can be kept private as they are not constructive. A parent should not have to justify why their child is taking medications. It was most likely a long process and something they took time to process and understand. The decision was not made lightly and it was made with the child’s best interest in mind.

One parent shared, “[Someone suggested] I should stop giving her insulin and read about natural things that could help her. There is no replacement for insulin but insulin! Your body needs it or you die. Cucumber water and Chinese herbs aren’t going to help her. Or, maybe she should watch what she eats, what did she eat when she was first diagnosed with diabetes and how much did she weigh? Type one diabetes is not type two diabetes. Research, research, research!”

6. “She’ll grow out of it.”

When my daughter was born with Down syndrome, we even heard this one. Really? Her condition is genetic, as are several other disabilities. People don’t “grow out” of their disability, regardless of what it is. Disability is not a cold to get over with chicken noodle soup and rest. Children with autism become adults with autism.

A mom shared, “Home nursing agency [said] she’s an insurance liability, but gladly call back if she snaps out of it.”

 

7. “I could never do it.”

Do you love your children? Then yes, yes you could. It’s really that simple. Some of us hear it so often that it starts to sound as if our children were unlovable. Our children are as lovable as any other child. It also suggests only “special people” can love them, and we already covered that one: ordinary people love their kids.

8. “Have you considered sending him to a group home?”

Just a generation ago, people with disabilities were sent to institutions and were shut out from the world. This comment is a remnant of those attitudes towards people with disabilities. While there might be situations where this is necessary, assuming parents don’t want to keep their children shows how little our society values people with disabilities. We love our kids, we want them home, we just need support so we can help them.

A parent shared, “[A] behavior specialist told us to consider sending her away [and it would be a] vacation for myself and our family.”

9. “Have you tried giving _______?”

Many of us have heard that, “my friend’s cousin’s neighbor had a child with the same condition and they tried this herb and now they are ‘cured.'” Trust me, if it is a possibility, we have probably heard about it and might have even tried it. We spend hours and hours doing research online — if we need advice, we will ask for it.

10. “Didn’t you know before birth?”

First, this is a personal question. Second, it suggests had we known about our child’s condition we would have chosen to terminate the pregnancy. Worse, it suggests the person asking would never love or want a child like ours. It is offensive. And if we didn’t know, does it mean we had “bad luck” and are now “stuck” with our kids? My children are a gift and a joy. I love them more than life and disability doesn’t change that one bit. My children are wanted.

11. “It could be worse, at least she can walk.”

This diminishes our struggles. Just because someone has more challenges doesn’t mean ours are not valid.

12. “He’ll eat when he is hungry.”

Sure, this works for some kids, but not for all! Kids who have sensory issues may not eat when they are hungry, so we do what we have to do to keep them healthy and alive.

A parent shared this comment made to her: “Just give her some ice cream, she will eat or she will eat if she gets hungry.” This regarding her 100 percent tube-fed daughter. Mom said, “You seriously think I haven’t tried ice cream? Oh, and no, she will starve to death. She doesn’t feel hunger.”

13. “My kid does it, too.”

Another comment diminishing our experiences and invalidating our fears. Even if your kid does it, too, it is not the same.

14. “God only gives us what we can handle.”

If we are going to dish out “spiritual advice,” we should at least make sure it is accurate. Without getting into theology here, this is not true — the sentiment has been taken out of context from a verse in the Bible talking about temptation. As one mom shared, “Sometimes I feel like I just can’t handle it.” I’ve been there, too.

15. “Stop using the ‘autism’ card for sympathy.”

Our child’s disability is not a “card” we play. It means we have to consider our children — disability included — in our planning, outings, gatherings and all aspects of our everyday lives. We do not want sympathy, we want compassion and understanding.

Do you parent kids with disabilities? What comments have you heard? Share with us in the comment section.

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