35 Secrets of Being a Special Needs Parent

In her post “6 Secrets Special Needs Moms Know but Won’t Tell You,” Suzanne Perryman, mom to a daughter with special needs, shares some of the less talked-about aspects of special needs parenting. She writes with honesty and personal insight about the worries, struggles and profound love you only understand if you’ve been there, too.

We thought a lot of you might have secrets of your own, so we asked our readers on Facebook to share one secret about parenting a child with special needs. Here is what we learned.

1. “Your child will teach you more than you will ever teach them.” — Melissa Noelle Brown Oliveras

your child will teach you more than you will ever teach them

2. “You have no idea how much potential you both have to exceed your expectations.” — Becky Hirsh Carroll

3. “Your child with special needs is a child first.” — Erica Conway-Wahle

4.You are not weak when you get angry and upset.” — Amy Sherian

5. “You know your kid best. Don’t be concerned with what others say. Trust your gut.” — Nancy Walchak-Body

6. “It’s lonely. But when you meet someone who gets it, it’s transforming.” — Melody Statham Cameron

It's lonely. But when you meet someone who gets it, it's transforming.

7.There is consistency in routines.” — Evelyn Wolke

8. “Don’t let anyone ever tell you that you are not supposed to grieve. Grieve for as long as it takes. Day by day, week by week and then month by month, the days get better.” — Kelly Anne Kuziw Lautrup

9. “You can say ‘no’ to doctors.” — Alison Baxter

10.It’s a lot harder than it looks. It infiltrates every crevice of your life and affects every minute of every hour of every day. It’s right there when you wake up in the morning and doesn’t stop challenging you until bedtime (and doesn’t stop even then).” — Hilah Swidler Marca

11. “Grieving the losses is not incompatible with celebrating the triumphs.” — Tracey Johnson Buzzeo

Grieving the losses is not incompatible with celebrating the triumphs.

12. I’ve found that optimism is exhausting and realism is a source of comfort.” — Ashley Mobley

13.You have to also take care of yourself.” — Amy Streater Bazerghi

14.Pencil it in on the calendar, never pen. Be flexible.” — Kodi Wilson

15. “It’s about progress, not perfection.” — Melissa Cote

16. “My kid takes longer to ‘grow up.’ Secretly, that is sort of awesome.” — Rebecca Smith Masterson

my kid takes longer to grow up. secretly that is sort of awesome

17. “It won’t help to compare your child to others.” — Amy Shuster Allnutt

18. “If your child knows that you truly believe in him or her, he or she will surpass all limitations.” — Tala Rifai

19. “You’ll secretly mourn the childhood you thought your child would have.” — Shelly Loy

20. “You don’t ask, you just do.” — Deb Tedesco

21. “Parenting for special needs and ‘typical’ kids is like a tightrope walk without a net. The only difference is that special needs parents know exactly how close the ground is. That perspective helps us appreciate everything so much more.” — Amy Kenny

Parenting for special needs and 'typical' kids is like a tightrope walk without a net. The only difference is that special needs parents know exactly how close the ground is. That perspective helps us appreciate everything so much more.

22. “You will become an army for your child.” — Stacey Weber

23.It’s OK to let your child set the pace.” — Sherry Milner

24. “You and your child have nothing to be ashamed of.” — Heather Lee

25.You don’t always have to be the cheerleader. It’s OK to say, ‘This sucks sometimes and it’s hard!’” — Dawn Camp Adams

26. “We’ve had some hard times, so I don’t say this lightly — my daughter’s special needs have given us more than they have taken away.” — Julie Preston Bean

We've had some hard times, so I don't say this lightly — my daughter's special needs have given us more than they have taken away.

27. “There will be periods in your life when it feels like you take more than you give, but there will be other times when you are in a position to help.” — Seriously Not Boring

28. “You’ll need a sense of humor… Fast!” — Amy Anop Eversole

29. “Parents who have walked the same path are the people who will march alongside you and hold you up in this journey.” — Erica Oliver Heibel

30. “It’s an honor.” — Kathy Jordan

it's an honor

31. “You are dealing with a living situation far beyond what an average person deals with. There are services that can help give you a break. Never be ashamed to seek professional help.” — Stacey Rushing

32.I cry. All the time. Joy, frustration, exhaustion, successes, good days, bad days — I cry for all of them.” — Lauren Swick Jordan

33. “Some things may never get better, but your ability to deal with that problem will improve.” — Wayne Kirk

Some things may never get better, but your ability to deal with that problem will improve

34. “You don’t have to be a perfect parent. Just love your child, that’s plenty perfect enough.” — Annemarie Gibbs

35. “You’re now in a secret world. You’ll see things you never imagined: ignorance, rudeness and discrimination. But you’ll also witness so many everyday miracles, and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle and be present in that moment. You’ll treasure things most wouldn’t think twice about. You’ll become an advocate, an educator, a specialist and a therapist, but most of all, you’ll be a mom to the most wonderful child.” — Geraldine Renton

You're now in a secret world. You'll see things you never imagined: ignorance, rudeness and discrimination. But you’ll also witness so many everyday miracles, and you'll know it. You won't think a milestone is just a milestone, you'll know it's a miracle and be present in that moment. You'll treasure things most wouldn't think twice about. You'll become an advocate, an educator, a specialist and a therapist, but most of all, you'll be a mom to the most wonderful child.

*Some responses have been edited and shortened.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Thanks!

35 Secrets of Being a Special Needs Parent
35 Secrets of Being a Special Needs Parent


She Woke Up for Me 17 Years Ago. So I Do This for Her Every Day.

Seventeen-ish years ago, my daughter, Taylor, was born a healthy, typical, thriving baby girl. Three days later, she was dying. Her tiny body was lifeless, covered in tubes and wires. The doctors discovered she had meningitis that was caused by Group B Strep, a rare and preventable infection she contracted during birth. From me. Her mom. The one who was supposed to protect her.

Days went by and not much changed. Machines beeped, IVs dripped and the air pumped into her lungs. I read her stories, sang songs and watched the numbers on the monitors methodically tick up and down. Then the day came that the doctors wanted to have a meeting.

“Things are not improving,” they said. “It’s coming close to a time when you are going to have to make a choice.”

becky holding her daughter with a ventilator

A choice for what? I didn’t understand. I crawled onto my mom’s lap and wept. How was this happening? I was only 17 myself; how was I supposed to make a decision for my tiny baby to live or die?

Luckily, I never had to. Later that night, Taylor coughed the breathing tube out of place on her own. Nurses and doctors rushed in as we were rushed out. What seemed like an eternity passed before the ICU doctor came to find us.

“The tube is out. She’s breathing on her own.”

I think I sprinted back to her bedside and there she was, propped up by a nurse’s hand getting a breathing treatment to clear her lungs. The way the mist was falling around her. She looked like an angel on a cloud, and for a brief second, she opened her eyes. To this day I will swear to you she winked at me.

She woke up for me that night. So I live every day for her. That’s the deal.

Things got better after that. Finally we had hope.

becky's grown daughter in a wheelchair

Life for Taylor will never be easy. The meningitis killed over 80 percent of her brain. She has since been diagnosed with spastic quadriplegic cerebral palsy, scoliosis, severe developmental delays, is nonverbal and blah blah blah…

She has had more surgeries than years on earth, but every time she bounces back stronger and happier. And her smile… her smile and her zest for life is infectious!

Sure, I have my days when I just want to lock myself in a room or scream at the top of my lungs or sob uncontrollably into a puddle of mush. And sometimes I do. But then I remember back to that day almost 17 years ago when she winked at me and I get up, brush myself off and keep it moving, because Taylor doesn’t need that. She deserves better. She is my life now and she needs ME. She doesn’t need a pile of mush on the floor. She needs a fighter, she needs an advocate, she needs a friend and sometimes she needs someone to be a stone cold b*tch!

Most importantly, she needs her mom. And I’m going to be there, every day, for the rest of my life. Not a day goes by that I don’t worry myself sick over her health or our future or over-analyze how I would singlehandedly try to rescue Taylor from a burning building, sinking ship or collapsed bridge (not exaggerating). But I’ll figure it out. Always have, always will.

Over the years of being Taylor’s mom, I’ve been called a lot of things. Angel, special, warrior, strong… you get the drift. Typically I just smile and nod or respond with, “I’m not doing anything you wouldn’t do yourself.” Parents in general tend to sell themselves short. I guess my point in all of this is to say that, as parents of special needs children, we aren’t better, stronger, smarter or any other comparison to be made with parents of “typical” children. We are just lucky. Lucky enough to have witnessed the miracle of a child with the will and determination that gives us very little room for error. My point is, our strength and will comes from our children.

Becky holding her daughter

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When a Nurse’s Simple Act for My Daughter Became Unforgettable

Lei is a nurse at The Hospital for Sick Children in Toronto, Ontario. She works in the plastic surgery ward. I met her when my daughter underwent surgery in January of 2012. Due to some complications, my daughter, who was a neurosurgery patient, ended up in the plastic surgery ward for three months.

Lei went above and beyond what her job asked of her, what I asked of her. She is the type of nurse who I truly believe took us home with her. I believe she went to bed thinking about Harley and woke up with her name on her lips.

She introduced us to her daughter while we were there; her daughter had some special needs, so Lei got it. This is a very personal thing to share with someone you just met. I am not sure why she felt comfortable enough, and I don’t know why she did it, but I am sure she had a reason.

I found myself disappointed on the days she wasn’t working. I find myself thinking of her and her daughter even now, three years later. I can’t pinpoint exactly what it is about her, but I breathed easier when she was around. I trusted her with Harley. She was given a gift and is a gentle soul. I truly believe she does her job out of pure love. She was in our lives for a short time during a very lonely and dark period, and I don’t really think she understands what she did for us… for me.

I don’t know if she really understands the effect she has on her patients and their families, and I know she has no idea how much she helped me.

She did a simple act… she loved my daughter.

To the Man Trying to Cut Early Intervention Services for Our Kids

“And let me tell you a funny thing about moms: when you make one of us mad, you have ignited the fury of the masses. And NOTHING is scarier than a bunch of angry moms.”

Not more than a month ago, I typed out these lines in a letter to Illinois Governor Bruce Rauner as tears streamed down my face.

Currently, Governor Rauner wants to deny Early Intervention services to children in Illinois who fall in the 30 to 49 percent developmental delay range. Early Intervention is instrumental in helping children reach their full potential. These proposed cuts will affect my daughter, along with potentially 10,000 other children in the state of Illinois.

With the assistance of some other amazing Early Intervention moms, I decided to prove to Governor Rauner just how true my words are: nothing is scarier and more powerful than a bunch of angry moms. Together, we will fight until every child has the services he or she so desperately needs and deserves.

Dear Governor Rauner:

We are strong women.

We are your neighbors, your sisters, your daughters and your best friends.

We are the mothers of amazing, resilient, determined and beautiful children. Children with needs that may differ from those of your own children.

We know — because of our children — that anything is possible.

We have seen the positive effects of prayer and hope and hard work.

We believe in in the power of PT, OT, DT and Speech services.

We have cried at diagnoses and celebrated inchstones.

We have felt the pain of isolation. And we have experienced the beauty of finding our “village.”

We know all too well that sometimes what is worth having is undeniably worth fighting for.

We are the voices of the silenced, the unseen and the ignored.

And that’s why we are fighting this battle — not just for our own children, but for those children yet to come. We are fighting to ensure that all children will have access to the services they need in order to reach their full potential. We are fighting for a better and brighter future.

We are Early Intervention Moms.

We are in this together.

And Governor Rauner, we don’t give up.

We are strong women.

Learn more about what we are fighting for here: facebook.com/ineedei.

A version of this post originally appeared on Crazy Cakes and Eskimo Kisses.

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Incredible Photo Series Helps Kids With Disabilities See Their Inner Superhero

Renee Bergeron is a professional photographer living in Bellingham, Washington. Her 4-year-old son, Apollo, was diagnosed with a double aortic arch, a rare heart defect, when he was 18 months old. In just one year he underwent two open-heart surgeries and had to have a feeding tube inserted in his stomach, along with numerous other medical procedures, according to his mom’s website.

Bergeron wanted to make sure her son always had a positive self-image despite his diagnosis, so she dressed him up like a superhero and took a few pictures.

Apollo wearing purple cape and goggles, standing on the grass with trees in the background
Photo of Apollo republished with permission from Little Earthling Photography.
Apollo wearing purple cape and goggles, standing in the grass with trees in the background
Photo of Apollo republished with permission from Little Earthling Photography.

“When Apollo was about 2 years old, I was fooling around with my wide-angle fisheye lens to get some fun photos. When I saw the way he posed, with such strength and confidence, I knew I wanted him to keep that image of himself,” Bergeron told The Mighty. “At 2, he was too young to feel self-conscious about his feeding tube or view himself as different from other kids, but I knew that day would come. I took the images and shared them with him in a book so he could always see himself as strong and confident.”

Apollo loved his photos, and Bergeron wanted other children to experience that same confidence boost. In the summer of 2013, The Superhero Project, a photography series portraying children with special needs as superheroes, was born. Bergeron meets with children with special needs and their parents and creates beautiful photographs that reveal each child’s inner-superhero — free of charge.

Avery wearing a cape on the grass
Photo of Avery republished with permission from Little Earthling Photography.
Cody wearing a cape and holding his hand out
Photo of Cody, who has Down syndrome. Republished with permission from Little Earthling Photography.

“I wanted to give these children a view of themselves as strong, beautiful individuals,” Bergeron told The Mighty.

Melanie wearing fairy wings, standing in a grassy field
Photo of Melanie, who has autism, epilepsy and sensory processing disorder. Republished with permission from Little Earthling Photography.
Victoria wearing a pink tiara and carrying a pink wand
Photo of Victoria, who has a leg deformity. Republished with permission from Little Earthling Photography.

Some of the children in Bergerson’s photos have physical disabilities, but others have invisible disabilities like autism, apraxia or a sensory disorder.

Avi wearing goggles and a purple cape
Photo of Avi, who has sensory challenges. Republished with permission from Little Earthling Photography.
Mila walking in grassy field with a purple cape
Photo of Mila, who has apraxia. Republished with permission from Little Earthling Photography.

Bergeron says embarking on this project has taught her about how much value children with special needs can add to a community. She hopes these photos will show the world just how strong they are.

“I think a lot of people look at others with special needs and think of them as ‘less’ in some ways,” Bergeron told The Mighty. “Let’s face it, though — these kids are all fighters. The obstacles they overcome daily just to cope in our world ought to make us all see them as superheroes.”

Apollo smiling with raised fists over his head
Photo of Apollo republished with permission from Little Earthling Photography.

Bergeron is currently in the process of booking the 2015 Superhero Project photoshoots. To learn more about the project or to contact Bergeron, visit her blog and professional website. To see more photos, visit The Superhero Project website.

 h/t The Stir

8 'Helpful' Things That Don’t Really Help People With Disabilities

An interesting conversation picked up on Reddit this week when a user posted the following question to people with disabilities: “What is something that we (presumably people without disabilities) do that we think helps, but it really doesn’t?” In just a day, more than 9,000 comments rolled in, and people living with all types of health conditions — from physical disabilities to developmental delays to invisible illnesses — offered a lot of great insight.

If you’re unfamiliar with what it’s like to live with a health condition, you may not even realize when you’re not actually being that helpful. (That’s OK because that’s where we come in). According to Redditors, here are eight common mistakes people make when they’re trying to help:

1. Helping without asking.

I love when people help me, but please always ask first, and if I say, ‘No thanks, I’ve got it,’ then go on with your day. Or better yet, strike up a conversation!”

“A friend of a friend of mine who [uses a wheelchair] told us how people constantly offer to push her to her destination, and often times go to start push (sic) her along. One person said, ‘I’m helping!’ as he started pushing her in her chair. She yelled back, ‘No, you’re kidnapping!!’ He stopped.”

2. Changing the way you talk.

A wheelchair doesn’t make someone hard of hearing. Or stupid. Stop acting like it does.”

“I’m hearing impaired (or hard of hearing, as the Deaf community prefers to put it). Do. Not. Yell at top volume, reeeaaaaaallllllly painfully slow. Just like it isn’t going to help a Spanish person understand the English you are speaking, it’s going to make you look real stupid to me… and everyone else we are around. It might work for you with Grandma, but I’m not your granny. Face me so I can read your lips, speak sharp and speak clear and we cool.”

Don’t bend down to my level to talk to me, I can hear you perfectly well, and it’s incredibly demeaning.”

“I have an autism spectrum disorder… Just talk to me like you would anyone else, and if I need something explained to me, I will ask. It’s that simple.”

3. Saying “But you don’t look [disabled, sick, etc.]”

“‘But you don’t look sick.’ ‘Well you don’t look like a doctor, but that’s just my opinion.'”

“The thing is, people without visible disabilities… often hear ‘But you don’t look sick’ as an excuse for the person saying it to not take the condition seriously or not give proper accommodations. In those cases it’s not a compliment, it’s an accusation. It happens way more often than you’d expect, and since it’s not just annoying but often an obstacle to actually getting the help needed to get on with your life, it gets old fast.”

4. Feeling sorry.

I don’t want to be pitied for something I can’t do anything about. It makes me feel less human/inferior.”

“Pity is condescending, it ignores a person’s talents, relationships, accomplishments and joys and paints them as nothing more than a thing that suffers.”

5. Offering medical advice.

“My husband has chronic migraines. I can’t tell you the number of times someone suggests f**king Excedrin. ‘Oh really? I’ve lived with migraines for 20 years and I never thought to try over-the-counter Excedrin! Tell me more about how it helped you with a really bad headache once.'”

Someone told me cashews could cure depression. I… may not have been the most tactful in my response.”

“Believe me, unless you are a researcher who specializes in my condition, you probably don’t know more about treatments than me.

6. Calling a person “inspiring” or “brave.”

I laugh when people call me an inspiration. If they only knew. No Hallmark movies to be made about me anytime soon. lol”

“This! I’m being praised for going to university and doing normal random everyday stuff. What am I supposed to do, sit on my ass all day and wait to die?

“There’s nothing brave or strong about it. I exist. My strength and courage comes from what I do. Not what I am.

7. Shrugging off an illness you can’t see.

“I have a chronic pain condition. Please don’t tell me it’s all in my head. Everything we experience, we experience through the brain. Of course it’s in my head.”

“Just because someone looks OK to you, doesn’t mean you should treat them like they’re faking it.”

8. Avoiding eye contact or keeping your questions to yourself.

“I have some form of Tourette’s syndrome. I love questions. Questions show concern and interest, and that is (for me at least) infinitely more preferable than awkward tension.”

“I only have one eye. Look, I already know I look different. I understand that your kid is curious. That’s a good thing. Let me answer their questions. They can learn something and find out that I’m still a nice guy even though I look different. Don’t make them feel afraid to talk to people who don’t look exactly like them.”

But remember, everyone is different.

“Many of the things that some people don’t want could likewise be things others might welcome. The point is, everyone is different and has different needs and feelings about their situation in life. My advice is engage in a conversation and ask if there is anything you can do. If the answer is yes, help. If the answer is no, fine. This applies to everyone — not just those people with a clear physical impairment.

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