Little girl wearing a harness, sitting on adaptive chair smiling at the camera

If You Have Ever Wondered Why There Are Children Alone in Their Hospital Rooms

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The painful side of being a working parent is having a child in the hospital.

It’s on almost everyone’s mind lately, what will the new healthcare plan look like? Will I lose coverage? Will preexisting conditions be covered? And for those of us who have children with special healthcare needs, will my child still get coverage? Will he or she get the treatment they need? What’s going to happen?

I’m writing this as I’m walking down the hallway at Rady Childrens Hospital on my way to work. My daughter is still admitted on the general medicine floor. Thankfully, Daddy is there to provide comfort and keep her safe.

As I walk down the hall, I can’t help but noticed all the children who are alone in their hospital rooms and obviously have complex medical needs. It’s so easy to judge — maybe the initial thoughts are their parents don’t care, or how sad it is they’re alone. And then it dawns on me. These children are probably here a lot, just as my daughter is.

The first admission of 2017 came just a few short weeks into the year. On just the first hospital stay of the year, I had already run short of sick hours and PTO. I am grateful to work for an amazing company who recognizes our unique circumstance and makes arrangements for me to take additional time off work to be with my daughter. Happy to be doing better, she was discharged, only to require readmission just a few short weeks later. My heart sinks — how is this going to work?

We live 60 miles from the children’s hospital. I have an amazing and loving husband at home who is supportive beyond words. But the reality is, my daughter is a twin, and the healthy twin is at home over an hour away. My PTO at work is already run dry from the last admission. I’m stuck in an emotional struggle where I cannot bear to leave my daughter, but at the same time I cannot afford to miss work. My job is our lifeline and it’s not only financial. Without it, we do not have the adequate healthcare coverage we need for our daughter. Sure, the easy answer seems to be to change our lifestyle and be a stay-at-home mom. And while my husband has an amazing developing career, the benefits offered by his company are not only unaffordable, but are inadequate for our family’s needs. And now with potential changes to healthcare policies in the near future, I am fearful that if I leave this job, my daughter will be left without healthcare coverage due to her “preexisting condition.” So I choose to arrange for a neighbor to watch our twin at home while my husband drives to the hospital to stay with our ill daughter.

 

I become teary eyed as I leave the unit and my daughter cries for mommy. I know my daughter is in good hands, but I will be attending work while she is in the hospital, and it just feels wrong. And then it dawns of me how lucky we are to have the support we have. At least we are able to alternate our shifts so we can arrange for Daddy to be at the hospital while I’m at work. My mom will be flying in tomorrow to offer some very welcome relief and help with the kids. Our neighbors have gone above and beyond to help. Sadly, not all these families have this support.

The day moves slow and I cannot wait until my shift ends so I can hustle back to my daughter. As I return to the hospital after work, I see dozens of other parents also flooding the hospital unit. Many of us exchange quick glances and warm smiles. As time goes on, the parents who have been there for long admissions begin to recognize one another. We share brief updates on our children as we wait patiently for the secretary to buzz the door open for us. There are many warm embraces between parent and child, and reports of the happenings of the day from the loving nurses who helped nurture our children while we had to be away. And then a happy recognition comes to me: we are all great parents. We may feel sad or inadequate for leaving a chronic child in the hospital while we go to work. But we are warriors doing what we have to do to keep our family afloat. It’s sad that it has to be this way, but we are strong and we will make it through this admission just as we always have in the past.

To all those resilient moms and dads out there, I commend you for doing what you need to do to keep your family running while still managing to put your children first.

So I urge the political powers that be — please consider us when you determine the fate of our healthcare system. We’re not looking for a “handout.” We are simply looking for help meeting our family’s unique healthcare needs while also being able to be a parent. No parent should have to endure the torture of leaving their child alone in a hospital while they go to work. Unfortunately, many of the proposed plans involve severe cuts to children’s medical services. Many of us simply cannot stay afloat without these services. So I urge you, whether you are a parent of a disabled child, know someone who has a disabled child, or just want to advocate for children’s medical rights, please write to your local politicians. Help them to see this hidden side of healthcare policy.

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To the Parents of Kids With Disabilities, You Do Enough

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The past couple of years we have attended a camp in William’s Bay, Wisconsin, called Chatter Matters. It is focused around kids with disabilities who use a communication device to communicate. This is the one time a year we are surrounded by families who “get it.” One thing I brought away from camp this year that stuck with me, is how many of us parents feel we don’t do enough for our kids. I feel like this often.

So, here I am, writing a letter to you, to me and to any other parents of children with a disability who think they don’t do enough.

You do enough, and you are amazing.

I know you’re exhausted, but you still get to Speech therapy on Monday, Physical therapy on Tuesday and Occupational therapy on Wednesday. You are probably also running to extracurricular activities ranging from horseback riding (hippotherapy) on Saturdays, to adaptive baseball on Monday and Wednesday, to adaptive swimming lessons on Wednesday evenings at your local YMCA and on top of those, doctor appointments you have to schedule and show up to with a clear mind. And sometimes you juggle your own job to pay for everything, either at or away from home.

You do enough.

Besides all the therapies, you’re trying to help your child live the most “normal” life as possible by going to the park, or maybe a stroll through the zoo, or taking a family trip somewhere to get away from all of the hustle. But, let’s be real, sometimes the hustle is anywhere and everywhere we go.

If you’re like me at all, every waking moment of every day is something close to one of those therapy sessions we fight so hard to get approved by insurance on a quarterly basis. Every step up or down, every toy, the bins of corn and beans we use for sensory input that end up all over the floor, every time you play a game and make sure the communication device is out and ready and set up to make sure they are learning how to navigate around properly, you are there.

You do enough.

There are probably days when you don’t shower and your hair is a mess, but your kids look clean and put together. There are probably days and nights when you just want to cry. There are probably days where coffee is the only thing that keeps you going. There are probably days when you’re angry at the world, and every questioning look from a stranger makes you want to teach the world about respecting people with disabilities. There are probably days when you make it all look so easy because your child had a good night and you were able to sleep more than three hours at a time the night before.

This is our normal, and we do enough.

On top of therapies and other activities, you handle the medical bills. The countless hours on the phone with insurance companies and all of the follow-up calls to the medical professionals that all somehow seem to forget that more than likely we can’t answer our phones half of time when they finally call back days later, more than likely after our third call that week. We’re in a therapy session when they call, learning new ways to help our children this week while they’re at home.

You do enough.

 

Lets talk about IEP meetings. The one thing we can’t avoid and we pretty much might hate to the core. Who wants to sit in a room with multiple educators and therapists and hear about how our child isn’t making progress, or their progress is so slow they’re still learning the numbers 1, 2 and 3 — while all of their “typical” classmates are already working on multiplication. We fight for aide support, lunch support, buddy support, more therapy time, more 1:1 time and try to plan out a curriculum that “includes” our child in a typical classroom setting for a percentage of each day, which seems to be more for social interaction because you’re told your child should be focusing more on “life skills.” If you’re not familiar with life skills, think about cleaning a table, emptying the garbage and sweeping the floor. Once they get older it will include things like shopping at the grocery store and other day-to-day things. Luckily, we have had a lot of luck with our schools out here for my daughter, and they have been very supportive with her all around, and it’s been amazing. But, I know this isn’t always the case and no matter what, IEPs are always the time to put your game face on.

We do enough.

On to something as simple as a shopping trip to Target. I think it’s great they have the new carts to help kids with disabilities. Every store should have these. And if you’ve used them and they work for you, that’s great. My daughter will not use a cart unless she’s standing on it or trying to climb in the cart entirely (more like making me pick up her up and lift her in and out repeatedly). Add low muscle-tone yet constant movement. It takes us about 10 minutes to get to the back of the store between stopping and getting in and out of the cart, on top of trying to communicate what we should and shouldn’t be doing that probably looks like charades to most people because of lack of verbal communication, and it’s exhausting — mentally, physically and sometimes emotionally. Emotions can hit on any day, for me it’s when I see the 7-year-old girl holding her Starbucks cup as she walks nicely next to her parents, talking about something fun she did with her friend…it’s hard not being able to have a full conversation with my daughter and know what she’s thinking. And I wonder if she’s thinking the same thing as well. But we walk on and we do our thing and get stuff done.

We do enough.

Let’s talk about one last thing we probably have dealt with at some point while out in public: strangers and their looks of judgment. Whether a child is in a wheelchair, screaming, wearing leg-braces, licking the window at the entrance of a store, not answering a question when the checkout lady asks their name and age — we have felt that judgment these strangers show in their eyes and possibly hear them as they whisper and walk past you. Our kids do not deserve that judgment, at all. I don’t know about you, but I’ve given a few mean glances towards these people and muttered somethings under my breath. Sometimes I try to explain why my daughter isn’t answering a question and sometimes we use sign language to say “thank you” to help get the point across when she doesn’t answer the checkout lady’s question, and they usually get it… but then there are the people who don’t get it, the ones whom I have written about on a rant on Facebook while also making little business cards to hand out about my child and her disability in hopes to spread awareness in the future, in case the occasion arises again.

You are your child’s advocate.

You do enough.

Being a parent of a child with a disability can be hard. I don’t know how many times I’ve heard people tell me they could “never do what you do.” Honestly, what is that even suppose to mean? I’m pretty sure most people mean it as a compliment and in a roundabout way are telling us we are strong, at least stronger than them. And I can’t argue with that, because maybe we are stronger because of our child. But, let’s try not to say this in front of my child –she can hear you. How would you feel if someone talked like that about you?

Being a parent is a wonderful gift, and it is also putting yourself last each and every single day to make sure your children’s lives are as wonderful as possible. We try to make time for ourselves when we can, but, sometimes we get tired, sometimes we cry, sometimes we cancel on friends (the ones who have actually stuck around), sometimes we don’t shower, sometimes we don’t take out the communication device, sometimes we miss therapy, sometimes we miss baseball practice, and that is OK. We are not perfect, but we do try, and we try the hardest out of any other people I know, and sometimes we need to acknowledge that we do enough, we do more than enough.

We are strong and we are amazing.

Keep your chin up, you’ve got this.

You do enough.

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28 Truths Teachers of Kids With Disabilities Should Know This Year

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New school years are hard for my children with disabilities but also for me as their mom. I worry about their new teachers. How much experience do they have with kids with disabilities in their classroom? Will they be kind? Will they focus on my child’s limitations or in their potential? Will they have appropriate expectations for my child? Will they love my child?

 

On the last day of school, both the special education teacher and the regular education teacher walked my daughter, who has Down syndrome, to the car to say goodbye. They were both crying, sad my rascal would no longer be their student. While the school year was not perfect and I wish teachers had higher expectations for my daughter, the one thing I never doubted was their kindness, care and love for my child.

I know my daughter enriched their lives in a powerful way, but will the new teachers be as accepting and loving? Teachers tend to set the tone for the school year, and as parents, we want our children to have successful years.

I will guess I am not the only parent who worries about teachers, so we reached out to our Mighty community and asked the question, “What do you wish teachers understood about your child with a disability? Or if you’re a disabled adult, what do you wish your teachers understood about you growing up?”

Here are their responses:

1. “Yes, I was on an IEP and also happened to be gifted. This seemed hard for some of the IEP team to understand at times. My parents were even told I couldn’t join the gifted program in elementary school because there was no way my braillist could prepare all my work in time, so I didn’t even get the chance to be tested. It took a high school teacher noticing I was getting all my work done for her class super quickly, then sometimes finishing homework for other classes in the work time she gave us, plus generally not being challenged and looking bored, to find an advocate to help me get to the next level. No surprise the same braillist had no problem preparing work for several AP and honors level classes at a time in my last three years of high school. I also had issues with the counselor for the top 100 kids in my class messing up my accommodations for the ACT. Her response was that she didn’t know what she was doing because she doesn’t typically handle accommodations. The problem is that the people who work with gifted students and the IEP team rarely interacted.”

2. “I wanted the same things other kids wanted. A kid shouldn’t be excluded from activities just because they have a disability and need adaptive equipment.”

3. “As an adult looking back, I wish some of the teachers had [asked] me questions. Yes, I was a kid, but a couple of [teachers] felt too uncomfortable to just ask me if I could hear where I was sitting or if I needed more time on a test. They would just move me in front of the whole class or call me out in front of everyone. I just wanted to fit in and the more they tried to ‘help’ without asking the more out of place I felt. I’m about to be 25, and since the age of 8 I have been very vocal about the fact that people who have honest questions are welcome to ask them. I don’t mind and it does not make me uncomfortable at all!”

4. “Just because she isn’t ‘acting out’ at school doesn’t mean she can cope in any social context.”

5. “With [the] medications she is on, what you [see] is her best. Saying she needs to try harder is like telling a straight-A student to try harder.”

6. “As a teacher and a mother of a [son with a disability] I wish teachers and parents would understand that everyone is different and learns at their own speed.”

7. “Although he’s young, he’s endured trauma and needs compassion. Work with me to help him succeed.”

8. I am a teenager with Asperger’s and anxiety attacks that are pretty bad that come here and there. I wish my teachers knew that [although] I am tall, I need to be in the front of the room to focus. Most of the time I am told to sit in the back because of my height (despite them knowing about my IEP).”

9. “[I have] Asperger’s syndrome and selective mutism — I’m not [silent] because I don’t want to [talk] but because I physically can’t. I need constant reassurance, support and time. You can’t rush me because this builds up more anxiety, causing meltdowns and sensory issues.”

10. “I wish my son’s former middle school teachers understood he did not melt down on purpose. My son’s autism was not always obvious to his teachers, and one day he became very emotionally distraught because they accused him of being deliberately difficult. He came home sobbing saying he didn’t want to live. Please be patient and know that just because a child doesn’t have an obvious disability on the outside, [it] doesn’t mean they aren’t struggling on the inside.”

11. “I wasn’t a ‘school skipper’ or ‘cheating the system’ by missing school and doing makeup work. They told me it was unfair to the other kids I had straight As but poor attendance.”

12. “I wish teachers understood what an amazing child I have and take the time to see past his struggles, down to his deep and creative thoughts about different topics. He isn’t a bad kid who doesn’t care and doesn’t want to learn; he is actually a pretty cool young man waiting to click with you and benefit from your guidance and help.”

13. “I had teachers tell me [as] a person with a language impairment and a learning disability that I wasn’t ‘college material!’ Some students will amaze you and go to college and get a Bachelor’s degree and persevere. And they are determined to prove you wrong!”

14. “We’re on the same side, the same team, both wanting similar results, not enemies or hostile adversaries. If all teacher-and-parent interactions started with that as a basic tenet, anything that happened after would be more productive than the norm, as I’ve experienced it.”

 

 

15. “I was not having ‘hysterical’ attacks but seizures, and I did not grow out of them.”

16. “I wish you understood my girl’s limited expressive language doesn’t mean she doesn’t understand everything others are saying. She hears when you talk about her instead of to her; she hears when you discuss her low reading and comprehension levels with her aide; When you talk to the other kids about the exciting things they are going to do, then she doesn’t get to do [them]. When kids talk in front of her thinking she doesn’t understand and you don’t correct them; When she has to do coloring or sit with a book while the others are engaged in a discussion. She knows when you pretend to understand her, she gets sad when you don’t take the time to find out what she is trying to say. She stops trying because nobody is listening and nobody realizes that she is.”

17. “My child with Down syndrome is a child first and foremost. When people see her as a disability instead of a little girl and treat her like she isn’t capable of understanding the world around her it is devastating. I want people to erase their low expectations and wonder with me, ‘How far can she go?’ Being optimistic is always the better path with kids with disabilities.”

18. “I would want them to know that while living with a disability may mean we have to face unique challenges inside the classroom, those unique challenges do not mean we aren’t just as capable and able to succeed as every other student they see. While it may take us a tad bit longer to accomplish some tasks, and a few adaptations here and there, we can and will succeed. Please see us for who we are and what we can do, rather than what we may struggle with. Please give us a chance.”

19. “When I draw during class, it’s not because I’m not paying attention. Drawing while listening helps me focus and process the material better. I have an auditory processing disorder and learning disabilities. With the help of art, I became a successful straight-A student in high school.”

20. “My child missed a lot of school due to severe anxiety. During a parent/teacher interview, while complimenting my child for going from ‘barely attending’ to now succeeding in his class, this teacher said to me, ‘And to think that your child was faking being sick to get out of my class.’ Aarrggghhhh. If anything, my child faked being ‘well’ for a very long time. How wonderful it would be if these challenges could be accepted by schools rather than treated with skepticism, disbelief and mistrust.”

21. “I had a school nurse tell me she knew my secret. She said I only came down to her office because I liked her company and just wanted attention. I was made out to be a liar and exaggerator, and my teachers started to refuse my requests to go to the nurse or to be sent home. That title stuck with me until I got diagnosed with three different disabilities at the age of 19. If someone had just listened to me all those years I tried to communicate my pain, then I could have started my road to recovery much sooner and saved myself from self-doubt and irreversible damage to both my self-esteem and body.

22. “He doesn’t perform on command. You do have to build a relationship and trust with him to get him to respond to your requests in a classroom setting. Yes, my child can count, say his ABCs and many other things but will not [do it] just because you randomly ask him to.”

23. “Disabilities come in many forms, some visible, others not. Judgmental attitudes and compassion can not co-exist in an educational setting. Compassion is what is needed for both children and adults with disabilities. That would have helped me far greater, as a student, adult and parent.”

24. “I’m not trying to be horrible. I used to have a lot of meltdowns in the middle of class because of my sensory issues, I would just walk out of class [and] go into the bathroom where I felt safe. Everyone thought I was just an emotional mess. I also used to shut down when they would try to talk to me and they would say I was being a brat, when really it had to do with my autism. I got suspended more than once for not talking to them.”

25. “I wish they had noticed I was in pain. My family called me ‘the whinger’ and ignored my pain, so it would have been nice if a teacher noticed and my arthritis had been diagnosed before the last year of high school.”

26. “My 6-year-old with autism has had to work ridiculously hard just to be in a classroom with other kids and not have constant meltdowns. She goes to school and then spends hours in therapy so she can be successful in that classroom. We, as parents, are not raising a ‘brat’ and we spend many hours outside of a school setting working hard to help her be able to learn and grow in a class with typical peers. Also, even though she looks (and speaks) perfectly fine, it does not mean she does not have autism (and therefore yes, she does need accommodations).”

27. “I wish they understood they [were] role models for my classmates. If the teachers treated me like they didn’t care at all or it was too much work to care about me, why should my classmates act in a different way? Plus, I was just a student like everyone else and they shouldn’t talk to me like I was 5 years old.”

28. “Dear teacher of my gifted daughter with anxiety: I know my kid best! Work with me! We have to be on the same page and give kids consistency. Also, teach her skills outside of a book. She needs to be taught how to manage her feelings. Having said that, her peers need to learn too, teach empathy and compassion.”

What about you? What do you wish teachers understood about your child with a disability? Or if you’re a disabled adult, what do you wish your teachers understood about you growing up?  Let us know in the comments.

Thinkstock image by EVAfotografie

28 Truths Teachers of Kids With Disabilities Should Know This Year
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Great Summer Activities for Children Who Have Mobility Limitations

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While many parents celebrate the beginning of summer and enjoy outdoor activities and outings with their kids, if your family is anything like mine and you parent a child a physical disability, finding accessible activities can be a challenge.

We have been in situations where there is no ramp or elevator to access an event. We have attended events where the people planning seemed frazzled when “the kid in a wheelchair” showed up. We have even visited “accessible” playgrounds to find out they had a “special needs” swing and called the playground “accessible” when it wasn’t.

I don’t want my daughter to feel left out. I want her to have an enjoyable summer and feel like she got to enjoy her summer months as much as any other kid. It’s not as easy to find activities that fit our family, but we have found some solutions that work for us.

Here at The Mighty, we often get parents asking us for summer activity ideas for their children with mobility limitations. So we reached out to our community and asked what has worked for them.

 

“A group in Massachusetts runs a beach wheelchair program. They supply chairs that can go over sand and into the water at numerous beaches in MA, southern New Hampshire and southern Maine. You can also borrow them to take with you on a trip. Most National Parks are wheelchair accessible to some degree via either boardwalks (woods, swamps, etc) or mats (for sand).” — Peg D.

“Our local library has a great story hour once a week that we go to, and they make a craft after the stories have been read. We also have a great Splash Pad near us that my daughter enjoys because she can sit and splash in the water and still interact with other kids. Our family also does a fun activity every Friday in the summer. We go visit a fun place together — tour of chocolate factory, riverboat cruise, art museum, etc.” — Ali D

“Our local indoor ice skating rink allows wheelchairs on the ice with an adult pushing them. It’s a great activity for my daughter and her sister to get to participate in together!” — Andrea LB

 

“My boys and I have been going on road trips this summer. Saw a few lighthouses and even a castle. We also do Vacation Bible School.” — Jessica B

“Most bowling alleys have a ramp for the bowling ball they can use from their chair. Good for smaller children without mobility issues, too. Splash pads are fun. I have hooked up a regular yard sprinkler somewhere paved for the kids to play in also, for a free option.” — Martha K

“Pick one night a week for ice cream night. Find local ice cream stands in your area and go to a different one each week. It makes ice cream a special event and something to look forward to.” — Peg D

“We love roller skating (via wheelchair) and bowling with ramps. Also walks to the ice cream shop and playing at the universal playground.” — Sarah F

“Swimming is our favorite.” — Jennifer S

One more thing to consider are the many camps available for kids with disabilities. There are some camps specifically designed for kids with physical disabilities. One of the best parts of camps like these is the connections our kids make to other kids who are like them, and spending time with kids their age from within their disability community.

I also learned most Park & Recreation Departments have programs for kids with mobility issues. They also provide the supports needed to make sure kids are included in their activities. I think I will be checking that out!

What activities does your child with a physical disability enjoys doing during the summer? Or, if you are an adult with a physical disability, what advice would you give to parents? Let us know in the comments below.

Thinkstock image by jarenwicklund

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29 Secrets of Parents of Kids With Disabilities and Medical Needs

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Parenting can be a joy and a challenge. No matter how much we love our kids, there are always good and bad days, and when you parent a child with a disability, the lows can feel really low, and the highs can feel really high.

Sometimes we might wonder, “Does anyone understand what it feels like to walk in our shoes?” Many of us just want to know we are not alone as we learn the best way to help our kids thrive.

We wanted to know what parents raising children with disabilities or medically fragile children wish people understood about their experiences, so we reached out to our parenting community to ask. Perhaps these answers will help you realize you’re supported or encourage you to reach out to a parenting friend who may feel similarly.

 

Here’s what our community had to say:

1. “I feel… isolated. I’m busy keeping up with medical stuff day to day and multiple appointments. The people I talk to (not even friends) are mostly moms with [children with medical needs] I have met in online groups. I can’t remember the last time I had coffee with a friend or they sent me a message first. I’m sorry my life is so busy, but don’t give up and leave me behind.”

2. “When [people] say, ‘I don’t know how you do it,’ it [doesn’t feel] as sympathetic but as an insult. My son is [not] some kind of horrible burden who needs a superhero to parent him. [I am] doing what’s right and raising my son to be the most independent and productive member of society as he is capable of being. [That phrase communicates] loving him and wanting to go above and beyond is something the masses could never imagine being tasked with.”

3. “I’m doing the best I can. I’m not super human and you’d do this, too, if you had to. There are hard days [when] I don’t know how we’ll make it, but she’s my daughter and my entire world. I’ll do anything for her.”

4. “Most days I am completely exhausted and running on no sleep. Also, please remember that activities that tend to be simple for you and your ‘typical’ kids tend to be much more difficult for us. We [are also] likely to cancel plans at the last minute. So please, give us grace.”

5. “It feels like people treat our life like a tragedy or they completely ignore the struggles and needs we do have. No one really grasps how incredible the joys of this journey are or how hard it is. You can’t have one without the other.”

6. “I do want to come to the party. I do want to come out for tea. I wish I could come to the park with you anytime at all. But sometimes it’s easier to stay at home, sometimes I have to stay at home. It doesn’t mean I don’t want to be friends, but sometimes it’s hard.”

7. “I wish people understood all those simple suggestions they impart upon us — less sugar, firmer discipline, insert your ridiculous idea here — are offensive and demeaning. Until you are on the front lines you have no right to approach me, let alone judge me when I am doing my best. I have a team of trained professionals I pay for, whom I exhaust myself to go see, coaching us. Your snide remarks and ‘helpful hints’ are nothing more than thinly veiled insults towards my parenting. You don’t know [my child’s] medical history, you don’t know our struggle. You look at him having a sensory meltdown and see us failing when in reality getting dressed and in the car seat was a huge win for us. You are demeaning what we do every day to work together as a family unit. So unless you have a kind word or want to hold my purse while I provide a therapeutic hug, just leave us alone. You don’t understand and you never will.”

8. “People say (in a completely genuine and heartfelt spirit), ‘You are amazing and so much stronger than I could ever be!’ or ‘I don’t think I could do it.’ And I desperately want to tell them that they absolutely are that strong and [if] faced with mothering a child [with a disability], you can and will do amazing things you never thought possible.”

9. “When I share an accomplishment my kid has made, possibly years delayed even, don’t counter with one about your ‘typical’ kid. Let me have my moment.”

10. “My child can’t walk, but she damn sure knows when you talk down to her. We know the work our child put into something as ‘small’ as writing her name was just as much as a musician puts in for first chair, and we beam with pride over it. We’ve seen the lowest of lows, and because of that we are capable of seeing the pot of gold in anything.”

11. “I want people to know I cry alone sometimes.”

12. “I want people to understand that children with disabilities are still children. They also need kindness and understanding. They should not have to be put in a box to fit society’s idea of what ‘normal’ is.”

13. “I want people to know it is OK to ask questions, but ask them to those who have experienced what you are curious about. Ask me whatever you wish, I will answer as honestly as I can, because if you have the facts, then you can be a positive influence on others who are lacking in knowledge. Knowledge is the tool that will inspire compassion and understanding.”

14. “We are not ‘special’ because of our daughter with a disability.”

 

15. I want people to know that having a child with a disability means that one day we will have a teen with a disability. Most people are usually understanding when it’s a smaller child ‘acting out’ or just acting ‘different’ in general. Please remember that my 6-foot-tall teenage son may look like a full grown man, but we still struggle, and sometimes desperately need understanding.”

16. “I wish people would know that my children are so much more than their diagnosis.” 

17. “Try [not to ask] questions like, ‘What does he have?’ or ‘What’s wrong with him?’ Those are ignorant comments and deeply offensive.”

18. “I wish people understood that because my son is a wheelchair user does not mean his life is doom and gloom. In fact, it is the exact opposite, and he makes it that way. He is full of energy, life, happiness, and spirit. He faces his challenges head on and is stronger than anyone I know. Being in a wheelchair doesn’t mean that his life is miserable, it just means he sees it from a different view.”

19. “We are scared. We are scared to lose [our] child.”

20. “Sometimes a little compassion goes a long way when you are having a bad day in public. A kind word, a friendly offer of help can [be uplifting].”

21. “We will probably be late. Please be patient because we have good intentions. Last minute mishaps happen.”

22. “Nonverbal in no way means quiet.”

23. “I wish they knew how hard we have to fight for services and help. Also we are in the middle of a battle to keep healthcare for our children. We are almost in a hostile environment, and we struggle with lack of sleep and support.”

24. “Life is not ‘one size fits all.’ Even though people and families share the same disabilities, ‘life’ is much different for everyone. Personally, I am a believer that where you live is a huge contributor to the ‘kind’ of life you’re able to live. Where I live, the disabled community is not a priority, therefore, opportunities and understanding, are seriously lacking.”

25. “You will never understand the full extent of this life until you live it. My daughter is able, my daughter is strong and determined and her accomplishments are everything to me, and I will celebrate every tiny step.”

26. “I want people to understand that I will not ask for help. I will try to do everything for my child, on my own. If you want to be involved in my life, you need to take the ‘I will help you approach’ and just help. I don’t want to feel like I am being a burden to anyone else so you just need to jump in and help without being asked. Also, don’t be offended that I don’t ask for help. It’s who I am. I deal with my child’s needs on a daily basis (24 hours a day) and asking for help is hard.”

27. “Realize it’s OK to be happy, sad, scared and blessed at the same time. Raising a child with disabilities is a constant roller coaster ride, and no matter how hard it can be, it is the biggest thrill of [my] life.”

28. “I’s absolutely heartbreaking to watch your child (my son is now 18) be left out of everything because he’s ‘different.'”

29. “I like to shamelessly brag about my son. His accomplishments may be different compared to your children’s, but please understand they are extremely important to both of us. Our lives may be different from yours, but they aren’t any less, so please do not respond with pity when I tell you about him. He is my pride and joy, and I am so honored to be his mom.”

What do you wish people understood about your life as a parent to a child with a disability or medical needs? Or, if you are an adult with a disability, what advice would you give to parents? Let us know in the comments below.

29 Secrets of Parents of Kids With Disabilities and Medical Needs
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A Letter to Moms Who Doubt They Are Loved

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There are visions in my head of how life should be. I wonder if we all have them, the endless thoughts. When I wake up I have them, before I go to bed I have them.

How is life going? Is it all I hoped it would be? What do my children think of me as their mother, as their parent? Am I all they could hope for? Am I letting them down somehow, somewhere? Is my illness ruining their life? I need to give them more. I need to expose them to more, show them more, let them experience more.

Is it ever enough?

I know I have many shortcomings. Whether physical or emotional, there are many.When my babies tell me of their endless love for me and that they would never ask for another mommy, I have at times thought to myself, “Really, but why?” What is it that makes them so content to be with me? And then I think, how long will they feel this way? The doubts of myself are endless and ever evolving. But I believe I am not alone. I believe there are many other mothers out there doubting themselves, too. I believe they think similar thoughts. They feel similar endless worries.

So here’s a letter to all the moms, including myself, who are stuck in a cycle of self-doubt and criticism.

Dear Beautiful Mothers,

I wonder if you are tired; if you feel overwhelmed with everything life has thrown at you. Perhaps life has thrown some hard balls you never saw coming. In those moments, perhaps it was as if the ball hit you in the chest and you did all you could to simply keep breathing. But you did, you kept breathing — for them. You pushed on — for them. You didn’t stop — for them. They may not understand how hard you tried for them in that moment, but maybe they do. I believe they see more than we realize. They take in every single moment, action and word. They see when you are hurting, they see when you are pushing through, pretending everything is OK. I believe they see it. And when you think you have been a monster for simply reacting to life, perhaps you really aren’t the monster you thought. Trust your children when they tell you what they think of you.

Instead of questioning their love or your abilities — simply listen to them.

Take the kisses and promises of forever in this moment.

Stop doubting everything you are and feel the love they are emitting. Someone taught them that love, someone showered them with those kisses they now return. Someone helped them feel so full inside that their little hearts are overflowing with love now.

There are reasons why no one else will do but “mommy” when they are sick. Why they want you there for special moments, even if it’s as simple as a first dance lesson. You are their comfort, you make everything better, even if you can’t, they see you try. Even if in our grown-up world everything seems to be falling apart, you are keeping their world together. They cannot imagine life without you.

So when they say they love you, trust it. When they say there is no other mommy in the world they would ever want, believe it. Allow yourself to feel it deep in your heart cause they mean it.

Even if you have additional struggles, like an endless health or mental condition, that can only make them soft in a world that is incredibly hard. It can teach them to be kind
to others because you never know what a person is going through under their seemingly fine appearance. It can help them be aware of bullies and make them strong against them, cause they’ve seen what you go through. It can make them a strong little person who will grow into a strong comforting adult.

They won’t be perfect either, but their empathy and kindness towards others can be something beautiful to see.

So give yourself a break. Stop doubting yourself so much. When your babies exclaim their love for you, take a moment to see the reasons why. I believe you’ll see them if you try, if you let yourself.

 

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