When You Feel Guilty for Not Being a ‘Superhero’ Special Needs Parent

2k
2k

Parental guilt time. The other day I unwittingly sent my 7-year-old autistic son to school with the beginnings of a stomach flu. I am fortunate in that he is verbal and did tell me his tummy hurt when we arrived at the drop-off gate that morning. But when I pressed for details, he struggled to indicate he had to use the bathroom. OK, this was doable. I hurried him through the gate, explained the situation to the classroom aide and off he went just as the bell was sounding the beginning of the school day.

Erin Kirschner.4-001

In my mind, the problem was solved, so I didn’t give it a second thought. A short time later when the school nurse called to report he’d vomited all over the science lab, the guilt came rushing in. He’d obviously been feeling worse than simply needing a potty break but was incapable of telling me. Instead, he soldiered through his daily schedule as best he could until, well, he couldn’t. How had I missed this? I’m certainly no stranger to playing detective and trying to decipher things he says. I couldn’t help but feel I totally blew it in the mommy department.

While my son has made some amazing strides in the ability to express himself verbally, his autism makes it challenging for him to describe the depth of what or how he’s feeling. Even just initiating communication in general has been, and continues to be, an uphill climb. Considering that, I guess I’m lucky he was able to tell me about his tummy ache that day in the first place. But as usual, my tendency to torture myself with the clarity of 20/20 hindsight rears its ugly head: I should have taken a moment to pause and observe him more closely and perhaps then I would have picked up on the fact it was more than just him needing to use the bathroom. Shoulda, coulda, woulda. In the midst of the morning rush to get to school, I took him at his (limited) word.

Before I beat myself up too much, I must remember these moments of guilt and frustration serve as my reality checks. They do not define the bigger picture. As much as I’d like to, I will never — nor will any parent — be some kind of all-knowing, mind-reading superhero. When it comes right down to it, we’re all winging it as best we can, special needs parent or not. We will inevitably make mistakes along the way. That’s just life.

Erin Kirschner.2-001

The fact of the matter is, while the nuances of verbal communication remain elusive, my son is improving. His progress from a completely nonverbal 3-year-old to where he is now still utterly boggles my mind. Slowly but surely, he’s gaining skills and coping techniques to help navigate a world, which often makes little sense to him.

When you’re the parent of a child with autism, it’s so very easy to put this tremendous pressure on yourself to be some kind of caregiver extraordinaire. We transform into these hyper-vigilant mama and papa bears who become incredibly hard on ourselves, even in the face of an honest snafu. But — and believe me, I know this is easier said than done — we must resolve to take a step back and give ourselves permission to be human. It’s OK to take a breath, it’s OK to not be able to think 1,000 steps ahead to avoid the unavoidable, it’s OK to be wrong sometimes. It’s also overwhelming and stressful but not insurmountable.

So until the my son reaches a point of being able to elaborate on his own, I’ll listen to what he says but also pause and remind myself to look — really look — at him for some inkling of any deeper meaning that might be bubbling just below the surface. However, on the flip side, often there are no hidden details to what he’s telling me. And somewhere in the middle lies my challenge to discern the difference. In the meantime, I’ll try and forgive myself for the mistakes I know I’ll make.

And when I have remembered to take that step back and breathe a moment, I’m struck by the larger perspective that keeps me ultimately grounded. Even with the challenges my son and I encounter as we navigate these uncharted waters, there is not a day that goes by I’m not truly thankful he is in my life — autism and all. That’s what matters. That’s my reality check. And so it goes.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

2k
2k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Feisty Comics About Mental Illness We Can All Relate To

686
686

If you live with a mental illness, Ruby gets it. The 21-year-old self-taught comic from London, who goes by rubyetc online, has been drawing about her lllxperiences with mental health issues and bipolar disorder since she dropped out of school at 17.

“At the time it was a great way for me to express difficult experiences and emotions that I perhaps wasn’t able to verbalize,” she said to The Mighty in an email. “I’m someone who loves humor and laughing, so combining those two things in comics was something that really appealed to me.”

Editor’s note: Some comics below contain explicit language. 

Her comics are honest, sometimes heartbreaking, but always funny — and always real. The language can get a little vulgar, but it’s because she doesn’t sugarcoat her experiences. She hopes if people can relate, she can get them to laugh.

“People have said it’s brave to be so open, but I’ve never felt particularly self-conscious sharing my work with others,” she said. “Often I find myself drawing about things we’re all going through. Having a mental illness may make these things more challenging or extreme, but it’s definitely not black and white.”

Check out some of our favorites: 

image-7

To check out more of Ruby’s work, follow her on Tumblr and on Twitter.

686
686
TOPICS
JOIN THE CONVERSATION

To the Special Needs Parents Who Worry About Their Kids in School

870
870

To the parents of a child with special needs,

I’m a special education teacher. But I’m also the mother of a beautiful little boy with autism. Like any other mother who has a child with special needs, I have mixed emotions about my son starting school. I am terrified for him. New teachers, a new environment, a new routine — these can be scary things for a young person with autism. What if he refuses to get on the bus in the morning? What if he becomes so overwhelmed that he lashes out and hurts another child? What if he doesn’t like his teacher?

But at the same time, I’m also excited for him to begin a new chapter in his life. I have hopes and dreams that he will make friends, continue to improve his social skills and make some progress academically.

I’m blessed because I have seen this scenario countless times from a different perspective. I have seen many frazzled, scared and hesitant mothers arrive for their child’s first day of school. No doubt with the same worries, hopes and dreams that I have for my son. And this is what I want you to know.

When we chose to be special education teachers, we knew what we were getting ourselves into. We knew the job would be challenging and exhausting, but we chose to do it anyway. Because when we see our students making progress, no matter how big or small, it is the most rewarding feeling in the world.

We will look after your child. We will do everything in our power to make them feel safe, comfortable and happy. We will do our best to give them access to the curriculum, but at the same time, we won’t push them further than they are capable. We want them to succeed as much as you do.

We are happy to liaise with therapists, pediatricians, case workers and parents. Don’t feel like you are being annoying because you think of something else we need to know about your child every day. The more information you can give us, the easier it is for us to cater for their needs.

Yes it is scary sending your child off to school for the first time. Yes it may take them a little while to adjust. But I promise you, we will take good care of your child and treat them as if they were our own. We will shed a happy tear for their successes and work with them to help them through any challenges that may arise. There are times when you may catch us grinning from ear to ear, or dancing around excitedly, because your child initiated a conversation today or went up a reading level. We want to see your child succeed as much as you do.

It’s OK to be scared. I’m scared, too. But I promise you, everything will be OK. Better than OK. We will do everything in our power to help your child thrive.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

870
870
TOPICS
JOIN THE CONVERSATION

15 Perfect Pieces of Advice Parents Have Heard at the Hospital

1k
1k

When you think of what goes on in a hospital, you may imagine gray hallways filled with bleak prognoses, medical jargon and textbook explanations of what’s to come. And while it’s of course true that some of life’s biggest and most devastating challenges take place at hospitals, the people who work in these buildings are often sources of hope, inspiration and anything-but-textbook advice.

The Mighty worked with Boston Children’s Hospital to ask for some of the best advice people have ever received in the hospital. It seems that sometimes, all it takes is the right words to help someone feel at least a little bit better during a difficult time.

This is what they had to say: 

1. “Don’t live life one day at a time. Live it five minutes at a time. A day is harder to get through than five minutes.”
Another cancer mom [told me this] after my son was diagnosed with neuroblastoma. Best advice received to date. — Lisa Giammarco Cleary

bhffd copy
Submitted by Lisa Giammarco Cleary

2. “Don’t look things up on Google.” 

[A doctor said this] after we learned about our son’s diagnosis. — Carly Jackson Smith

2 copy
Submitted by Carly Jackson Smith

3. “Don’t put your child in a bubble. Let them live life.”

From a doctor — Nancy Jane Smith Mumford

4. “Go with your gut, you’re the Mom you know best.”

From one of the nurses when my preemie was born. — Paige Miller

3 copy
Submitted by Paige Miller

5. “Honey, when she starts pulling things off the table and flinging them, you’ll smack her hands, and wonder why you worried so much.”

My daughter was just a baby and everyone was giving me the low end of what she could do. I was feeling very much upset. The lab tech set me down and said this. Caiti is 25 now and can do so much. I remember those words like yesterday. — Susan Harrison Herscher

6. “Some days parenthood is just about surviving. Do what is best and what works for you and your family, who cares what anyone else is doing.”

From a doctor — Diana Godin

4 copy
Submitted by Diana Godin

7. “Take care of yourself too.”

When my daughter went into the NICU I was recovering from a c-section and sleeping on a cot since I refused to leave. I only left the room to pump, eat and bathe. There were times the NICU nurse would tell me to go for a walk or get lunch when I preferred to wait, but I quickly learned that as hard as it was to leave that room it was important to take those small breaks and trust the awesome nurses and doctors there, for the sake of my health and sanity and to be the best mom I could for my baby girl. — Samantha Tremblay

8. “There’s nothing you did to cause this in your child. Always try and keep a sense of humor.” 

[Two doctors who became] my two angels of hope. — Emily Gibbons

5 copy
Submitted by Emily Gibbons

9. “Treat him like you treat your other kids. He’ll do more than you know.”

Our neurology nurse, upon our discharge from the NICU. So far, she’s been right. My little fighter is moving mountains. — Kate Henderson

6 copy
Submitted by Kate Henderson

10. “Don’t think about where the finish line is, see it as a special journey that you will all share.” 

From a doctor. [I] think about that day and her words often. — Lisa Healey

11. “Appreciate every sunrise.”

From a doctor after our son’s bone marrow transplant. Six years later, our son is thriving and I’ve never forgotten those words. — Emily Finch Deyoung

7 copy
Submitted by Emily Finch Deyoung

12. “Don’t ever apologize for being a strong advocate for your daughter. We need you to be.” —

A nurse practitioner told me this after I was worried that my persistence would land me in jail, and that we were wasting people’s time in the ER. — Elissa Levin

13. “There is hope.” 

From a doctor in response to the diagnosis of our son who was only given 3-18 months to live. Kaiden is now 8. — Kerri Munro

8 copy
Submitted by Kerri Munro

14. “She takes her cues from you, Mom.”

A cardiac ICU nurse gave me this advice and it helped me stay positive and calm for my daughter. — Laura Bennett

15. “You are about to embark on the most incredible journey.” 

A doctor said this to us after accepting our prenatal diagnosis of Down syndrome. — Melanie Perkins McLaughlin

9 copy
Submitted by Melanie Perkins McLaughlin

*Answers have been edited and shortened. 

1k
1k
JOIN THE CONVERSATION

25 Confessions of a Special Needs Mom

2k
2k

I had great plans for being a parent. My children would play board games with me at night, have friends around for tea, talk to me enthusiastically about their school day and always say please and thank you.

Then I had children.

So there is more technology than board games, no friends around and no chit-chat about the school day, but I still thought we would read stories before bed, go shopping for clothes, kick a ball around in the garden and bake cakes.

Then I had children with special needs.

Parenting is now intense and includes working with a large team of health and educational professionals. It involves lots of trips to hospitals. It means sending my child miles in a taxi to school and consists of huge amounts of paperwork. But it is still a huge amount of joy and love.

It’s a different style of parenting. I’ve thought and done many things I never dreamed I would. Some are weird, some wonderful and others just brutally honest. Here are my top 25 confessions as a mom to two beautiful, funny and highly individual children with extra needs:

1. I have carried out speech therapy in a public toilet. My son has a current obsession with hand dryers, and I’m trying to encourage him to say “on.”Where better to find a whole bunch of hand dryers than in public toilets? Yes, I seriously asked strangers to wait to dry their hands in the hope he would vocalize. Yes, I am that desperate to have my son talk!

2. I rewarded my son’s defiance. At almost 6, he’s finally worked out how to shake his head to mean “no.” You’ve got to reward and encourage communication, even if it does seem odd saying, “Well done” when he has just appeared to go against what I asked of him.

3. I’ve been known to record the bedtime hour of “Cbeebies” so we can watch again at 3 a.m. when the kids wake up in the vain hope they’ll still realize it’s bedtime.

4. I made my son dinner for breakfast. When his current food obsession is mashed potato and gravy, you just know it isn’t going to go well with corn flakes on the side! So mash, carrots, peas and meat for breakfast it is then. No rush when mornings start at 5 a.m. anyway.

5. I’ve spent hours in shopping centers with my children and not boosted the economy in any way. Elevator doors, escalators and hand dryers in the toilets are far more interesting anyway.

6. I’ve nodded and agreed at meetings with professionals even when I have no intention of doing what they suggest just to get them to leave my home or have a meeting finish. It’s just easier sometimes.

7. I’ve sat in my son’s room staring at his bubble tube even when he’s been at school. If it calms him down, it may just work for Mom, too.

8. I’ve resorted to bribery just to get everyday tasks done. First dressed, then iPad. First nappy change, then chocolate. Sometimes there is just no other way.

9. I’ve put myself on time-out just to get some time.

10. I’ve cried publicly in a supermarket because they had no microwave mashed potatoes left.

11. I’ve emptied the inside bag of breakfast cereal into an old box of cereal because the packaging has been changed by the manufacturer and the kids won’t eat it any more.

12. I’ve seriously considered installing an elevator or a hand dryer in my own home and actually Googled the costs involved.

13. I’ve stayed up all night researching my child’s conditions.

14. I’ve taken photographs of lines of toys and elaborate train track set-ups so they can be restored to the satisfaction of my daughter in the event of them accidentally being touched.

15. I’ve felt tempted to tell people my child has a contagious illness so they leave her alone and don’t speak to her. It may avoid the tears and tantrums when she gets home because her personal space was intruded upon and she couldn’t cope with the sensory overload of people asking her questions.

16. I’ve seriously considered saying my children are much younger than they are to avoid having to mention why they can’t jump, climb, talk and still want carried.

17. I’ve kissed a waiter in a restaurant because he was willing to get five different options for drinks for my son so he could put his hand on the one he wanted. Some people are just angels in disguise.

18. I’ve washed and dried my daughter’s comfort blanket only to sit on it, walk on top of it and stick it inside my jumper for a while so she doesn’t notice it smells different or hasn’t got that dirty, worn look about it.

19. I’ve rushed from one hospital to another because I was frightened to change appointments that clashed because I knew we’d have to wait months again for fresh appointments.

20. I’ve worn my hair down and put on long-sleeved clothing to hide the fact my son attacked me when he was angry and my arms have bite marks and scratches from a 5-year-old. Why is it OK to admit a partner is abusing you but still taboo to say your child injured you?

21. I have wrapped a packet of nappies up in brown paper to take into my daughter’s school so it looked like a parcel to shield her embarrassment at being incontinent in a mainstream school.

22. I’ve told my daughter it’s OK not to share. This girl would give away everything to others at her own expense but freaks out if something special of hers is touched. Sometimes others have to recognize when something is special and learn that not everything has to be shared.

23. I’ve ignored my phone ringing. Some days it just gets all too much.

24. I worry about the future.

25. I have amazing children. I have a husband who loves me. I am so blessed. But I want to confess that often I still feel sad. And very alone.

So there you have it. They say confession is good for the soul. I hope that is true.

Follow this journey on Faithmummy.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

2k
2k
TOPICS
JOIN THE CONVERSATION

New Line of Plush Toys Features Character With Autism

410
410

Florida-based product development company SipNDip has released an original line of plush toys made up of eight characters with back stories designed to teach kids about social acceptance. Each toy has a name and a personal story that represents people from all different walks of life.

One of them is named Ryan and has autism.

-6
Courtesy of SipNDip

The Ryan toy is a cool kid who plays basketball, runs track and even plays guitar, according to the SipNDip Kickstarter page. Ryan, or “RyRy” as he’s also called, is based on one of the toy creators’ nephew, who also has autism and sometimes has difficulty connecting with kids his own age.

-3
The Ryan plush toy, courtesy of SipNDip

“A character like Ryan helps educate kids in a inspirational way,” says a spokesman for SipNDip in the video below. “It prepares them to be compassionate and worldly citizens in the future”

Screen Shot 2015-11-06 at 10.50.05 PM
Courtesy of SipNDip

A percentage of the sales from the Ryan plush toy will be donated to help kids with autism, SipNDip told The Mighty in an email. The company has partnered with Bike to the Beach, an organization that raises money for autism with charity bike rides.

For more information about SipNDip and the Ryan plushie toy, check out the video below:

SipNDip is currently raising money via kickstarter, visit the page for more information on how to purchase a plush toy.

410
410
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.