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

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.


15 Perfect Pieces of Advice Parents Have Heard at the Hospital

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. 

25 Confessions of a Special Needs Mom

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.

New Line of Plush Toys Features Character With Autism

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.

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.

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.

What You Don’t See in This Photo of My Son With Special Needs and Me

This picture was taken the summer of 2014. It’s a silhouette selfie of a mother and her son, standing strong by a railing and relishing their shadows.

Gabriella Volpe.2-001

But there’s a lot more to this photo that you don’t see.

The boy in the silhouette is 7 years old and requires support to stand and walk. He arrived at the railing in an adapted stroller guided by his mother. What you don’t see is the years worth of hard work it took him to get to this point, to this positioning, to this moment in this photo.

There are many other things you don’t see.

You don’t see the diagnosis printed in black and white on his medical record at birth.

You don’t see the many hours he spent in his parents’ arms crying fiercely when they didn’t know he was hurting.

You don’t see the years spent in therapy so he could learn to roll over, sit up and balance.

You don’t see the effort required to learn to hold his own bottle and to feed himself little snacks.

You don’t see how he looks deep into your eyes as he waits to be taught a new sign.

You don’t see his frustrations when he wants you to understand something but you can’t.

You don’t see the sleepless nights, the hospital stays and the frightening medical tests.

You don’t see the equipment this boy requires to stand, walk and sit.

You don’t see the village that surrounds both the boy and his mother — those who’ve been there since the beginning, those who’ve crept into their lives at just the right moment and those they never imagined building relationships with.

You don’t see the grandparents who shed secret tears for both of them, but they always show up with a smile and dessert.

You don’t see the whys, the what-ifs and the endless worries simply by looking at this photo.

You also don’t see how, despite these struggles, the same boy in the photograph laughs a contagious laugh and hugs the most snuggly hugs.

You don’t see how he wakes up ready to face another day — never dwelling on yesterday’s troubles.

You don’t see how simple things in life delight him.

You don’t see how comfortable he is in his own skin.

You don’t see how he easily accepts others.

You don’t see how he notices children and reaches out to give spontaneous, sloppy kisses.

You don’t see how connected he is to the human spirit.

You don’t see how happy he is being in our family.

You don’t see how he happy he is being alive.

This ramp leads to a gazebo by the river — a place this boy and his mother come to spend time together in silence.

What you don’t see is that this ramp is physical therapy for the boy, and the gazebo is spiritual therapy for his mother.

What you don’t see are the smiles they’re both wearing. Standing here on this day took a greater effort than it appears. The boy is giggling, the mom is elated. This was the first time he stood here — solid and proud.

Even though the mom worked hard to capture this perfect moment, the boy waited patiently as though he knew, too, that no one else would be able to see what they see in this picture.

What the Adults in My Autistic Child’s Life Don’t Realize About Me

We’re getting over the stigma about my son’s autism. I’m advocating — firmly and loudly — and I’m not afraid to look a little “weird” with him. If we have to bring a cardboard box to the grocery store so he can pretend to be a robot instead of rearranging the canned goods in alphabetical order, then we’ll bring a cardboard box so he can be a robot, and I’ll get a second to actually read the prices on the shelves.

I’ve learned the phrase to repeat to the school when they call and tell me he’s wandered out of the classroom or poked another child with a crayon or defaced the gymnasium floor with a rock he snuck in his pocket.

I say, “My son’s disability manifests as behavior. What are you going to do to accommodate his disability so he can participate in the classroom?”

I’m working hard to reframe my own understanding of his behavior at home, too, and to understand his disability manifests as behavior when he refuses to get dressed in the morning. He’ll sit on the floor beside the clothes I just gave him, but he’s so busy yelling about being cold that he can’t put his clothes on.

Eliot S.1-001

As my son’s diagnosis has come to light, I’ve learned I’m on the autism spectrum, too. During a year of intensive appointments and evaluations with a medical center specializing in kids like him, I was frequently caught up in a moment of “Holy sh*t, I was like that, too” and often “I am still like that, too.”

It’s beneficial because I understand the coping skills I’ve developed as an adult — I wear heavy bracelets on my right arm as surreptitious fidgets, I keep a notebook for writing lists, I listen to instrumental music while I work and podcasts while I drive, I know my personal rules for the clothing I wear and I don’t even bother trying to sit normally in chairs anymore.

But I wish the other people in my life understood this…about me.

It’s taken a lot of work for me to get people to see my son as someone with charming “quirks.” It takes a lot of support from me. I advocate. Social assumptions about gender make it easier: He’s a “weird” little boy, and he’s seen as “just a weird little boy.” Of course he’s obsessing over rocks and dinosaurs and bugs — “He’s a boy.” He’s forgiven for his behavior.

But in IEP meetings, I wish they’d understand that sometimes the parent of an autistic child might be autistic, too. When I need to write down everything that is said, when I don’t make eye contact, when I miss the signal to shake a hand, when I launch into the meeting agenda with no small talk, when I am not sitting “normally” in the chair and when I start doing the “weird” things I do with my body language.

Social assumptions about gender require girls and women to display a social awareness that is often lacking in people with autism. I wish the other adults who are involved in my son’s life worked hard to accept me as much as they work hard to accept him. I wish they recognized he and I share many traits, instead of seeing him as a problem to solve and seeing me as a resistant obstacle. I wish I’d get the same permission to be “weird.”

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.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.