What I Wanted to Tell the Grocery Clerks About My Nonverbal Son

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Among other things, my son is 4, very tall, autistic, handsome, affectionate and nonverbal. His sweet smile and fierce hugs endear him to everyone he meets. His autism is a full-time job — most days he’s out the door by 9 in the morning and doesn’t get a break until after 4 p.m. I act as the dutiful shuttle bus driver for school and all of his therapy appointments.

As a result of this packed schedule, we frequently end up running errands while in transit from one place to another. Inevitably, the cashier or someone in line will comment about how quiet and well-behaved my son is. Often, it’s someone apologizing for their own child’s behavior while thinking I’m some kind of disciplinary super mom. They imagine a halo over my gorgeous blonde little boy’s head as he stands there silently, looking at the floor, holding my hand.

Occasionally, they try to talk to him but he’ll turn his head away. Then comes the comment, “Oh, he’s shy, huh?” Sometimes I say yes, because he can be. Sometimes I’ll point out that talking to strangers isn’t a good idea. Sometimes I offer a smile and remain as silent as my son. It isn’t that I’m embarrassed of him or his diagnosis. I try to think what my son would want — would he want all these people knowing? Would it make it better or would it just make him feel even more isolated and different? He offers no explanation so usually I don’t either.

There was one exchange, though, that I will never forget. We were at a packed grocery store right before Christmas. The bagger and cashier were complaining because their kids were going on and on about what they wanted for gifts and had no respect for the meaning of the holiday. I fought back tears as I put my items on the belt. My son was sitting in the cart, his eyes downcast to avoid the bright fluorescent lights. He had my phone and was listening to music to help drown out the overstimulating sounds of the conveyor belt and the beeping of the register. The cashier glanced at me, looking for some commiseration. I couldn’t meet her gaze. I felt embarrassed because I never have any idea what my son wants for Christmas. As with every other holiday and occasion, I have to guess. Sometimes I guess right and sometimes I don’t.

I wanted to tell them how lucky they were that they could hear their children’s voices. I wanted to remind them what a gift it is to be able to know, for certain, what their children need at any given time. For the ability to be told what their children like for dinner or what they wish for on their birthday. My body started to shake with all the unspoken words threatening to pour out of me. I wanted to tell them the greatest Christmas gift I could receive would be for my son to tell me that he loved me. I would give anything to know what he was hoping for on Christmas morning, so he could feel like a regular kid and get something he wanted. I said nothing because I knew telling them all this wouldn’t change anything, but after it was time to leave, I sat in my car and cried.

My son may never talk. I have made peace with that. However, I’m going to continue to find a way for him to communicate not just for his needs, but also his wants. Because every child deserves to receive a gift that they’ll love.

Andrea Manson the mighty.2-001

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How I Explained Epilepsy to My Son With Autism

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“What’s a seizure, Mommy? How did I have a seizure?”

He doesn’t remember what happened, of course. Since he also has autism, he doesn’t ask just once or twice. The questions come all day long, week after week.

“When will I have another seizure?”

“Am I going to have another seizure now?”

“How many more seizures will I have?”

“What does epilepsy mean?”

“What happens when I have a seizure?”

“Why do we have to take a break now?

“What are you worried about, Mommy?”

“Are you afraid that I’m going to have another seizure now?”

The truth is that the epilepsy diagnosis wasn’t a surprise. For ten years, I asked doctors about the staring episodes, the lack of short-term memory, the uncontrollable laughter, the unusual blinking and eye-rolling and the sudden falls from his bicycle. The EEGs revealed no seizure activity. I knew that untreated absence seizures in childhood can develop into grand mal seizures in puberty. I knew that 20 to 40 percent of people with an autism diagnosis also have epilepsy. But knowing is not the same as holding my convulsing child.

In the world of autism, we break down every task and concept into smaller parts, then model, teach and re-teach until it becomes habit. I use the same method to address my son’s questions. This is his story; he wants to understand. And so I explain it to him, one piece at a time.

“All people have electricity inside their brains. It’s what makes us alive. When the electricity stops, we die. Some people with autism, like you, have extra electricity in certain parts of their brains. When your body started changing from a boy into a man, the electricity grew, too.”

“When you were on the field trip at the park, the electricity became too much and it made you faint. You weren’t awake — that’s why you don’t remember. You threw up and you fell to the ground. Your body was stiff and shaking.”

OLYMPUS DIGITAL CAMERA “What’s important to know is that you were with people who love you and knew how to take care of you. Mrs. B was with you when you fell. She made sure you did not hurt your head. A nurse was jogging by with her baby, and she stopped to help. An off-duty EMT saw you fall and came running over. Your history teacher found me at the picnic shelter, and soon I was with you, too. Mr. V saw you and wanted to help; Mr. L got to the hospital before the ambulance did, and he waited until he could see that you were OK. Father Joseph visited you in the hospital and gave you a blessing. You were surrounded by love the whole time.”

“During your other seizures, you were with Mom or Dad, and we took care of you the way Dr. F taught us. We will help you stay healthy and strong. Dr. F said you can swim if you have a life vest and stay with a grown-up. You can ride a horse or a bike if you wear a helmet and stay with a grown-up. You can climb if your harness is secured. We have to take breaks to make sure you do not become too tired. We don’t know when or if you will have more seizures. No one can see the future.  When you cannot be strong, we will be strong for you.”

This is his story, and he gave me permission to share it with you.

Do you have a story about your experience with epilepsy? Please send it [email protected] include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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The Important Reason Farmers All Over the World Are Taking Tractor Selfies

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Farmers are posing in front of their tractors for a cause that doesn’t usually go hand in hand with heavy machinery — suicide prevention. Using the hashtag #TractorSelfie4Rob, farmers are using their selfies to bring awareness to suicide among the farming community and raise money for Papyrus, a suicide prevention charity in the U.K.

Alex Paske started the campaign in memory of Rob Chapman, a farmer from Thurning, Northamptonshire, England, who was 29 when he took his own life last year, according to FG Insight.

 

For decades, farmers across the country have been dying by suicide at higher rates than the general population, according to a Newsweek cover story from last year. In what the outlet called an “international crisis,” Newsweek said the rate of farmer suicides in the United States is almost two times the rate of the general population, and in the U.K., one farmer a week dies by suicide.

Farming can be an isolated job especially during the summer, when farmers can be sat alone in tractors for hours on end, allowing their thoughts to run away with them,” Paske told FG Insight.

Now, farmers are taking to Twitter and Facebook with their tractors to spread the word that it’s OK to seek help. They’re then encouraged to make a donation to Papyrus by texting “RFTG64” with the amount they want to donate to 70070.

So far the campaign has raised almost 3,000 euros (or about $3,300). There will also be a Tractor Run in December with a 5-euro entrance fee. All the proceeds will go to Papyrus.

 

If you’re in the United States, you can donate online by clicking here.

 

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To the Kindergarten Class of My Child With Special Needs

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I have never walked this specific path before. I have taken kids to school on their first day of kindergarten and cried after drop off. I have been nervous for new adventures, but known in my heart they would love it. But I have never had to navigate public school with a child who had special needs.

Our time at our daughter Reese’s last school was special because the program was for children with disabilities. Many types of needs and diagnoses could get you into the program, and half of the day was devoted to inclusion into mainstream classes. I really thought the transition for me would be much easier than it is.

I am three weeks away from sending Reese into a classroom that is 100 percent mainstream. She’s absolutely ready for this. She knows all of her letters, the sounds of letters, her numbers and how to add them. She’s full of jokes and smiles, she can run around and play with her friends and she loves to be silly.

So here I am writing an open letter to her teachers and friends. Friends who are too young to even read, and teachers she may have in the immediate future or years to come. And to all teachers and friends of those who have a new kid in class who is just has something extra special and different about them. Please keep these five things in mind when you’re with my daughter:

1. Be patient.

It may take Reese an extra second to answer your question, but it’s there. She’s just too busy thinking about whether her answer is correct or not. Remind her she does, in fact, know the answer so she can just say it. Also, she may forget that same answer tomorrow when you ask. She knows it but just can’t get to it as quickly. But man, oh man, she can’t wait to see your eyes light up when she gets the answers correct. If you don’t understand something she says, try again later and you will. She has so much to say if you just wait for it.

2. Be safe.

This is all overwhelming and new — just like it is for a lot of kindergartners. But for Reese, she doesn’t really understand how new or different this is from previous years. School was a safe place for her. It was a place where all of her teachers were her best friends and her classmates were just like her.

She’ll see kindergarten the same way, so please help her remember that it is, as always, the safest and best place to spend your day. Give her a hug when she’s sad and don’t just say that I’ll be coming back at the end of the day. Help her up when she falls instead of telling her to brush it off. Sometimes being a safety net is just as important as teaching those life lessons. She just wants a cuddle once in a while, but teaching her a lesson on getting out of your seat will break her spirit for a week. She is a rule follower and will never have her “name on the board” or “points taken away” or anything like that. She can’t wait to help you as soon as she trusts that you’ll let her. This is what happens when kids spend a lot of time at the hospital. As they grow up, they have to learn to trust that the people in the room will be the same ones who will keep them safe from harm.

3. Be kind.

Reese’s AFO (ankle foot orthoses) boot has a cheetah print. That’s pretty cool, right? It helps her so her toe doesn’t drop when she’s trying to walk. She also can’t use her right hand that well. We call it “bad arm,” and it does what it needs to do and learns more every day. Her front teeth are gone because some of her meds ruined them. But who wants to brush that many teeth anyway? Reese’s hair is short and awkward, because she was basically bald this time last year. I knew she’d start kindergarten with a cute bob. She’s just like you. She wants to play with you and make you laugh even if she’s the size of a 3-year-old.

4. Be diligent.

It takes Reese a few more minutes to get things done in the bathroom. I’ll try to keep her in short dresses so she doesn’t have to deal with leggings often. But please keep an eye on how long she’s been in there. It’s possible she’s just trying to get her undies into the back of her leggings and “bad arm” is being a pain. Maybe send a friend in to get her. She will have an aide on the playground, at first, to teach her the boundaries, but please try to remind her in other locations to “step” because she only has one eye to catch that drop. Eventually, she’ll remember where all the steps are, but she just needs you to be her extra eye for a bit.

5. Be you.

Reese can’t wait to get to know her new friends and teachers. She loves so fiercely, and I can’t wait for her new school to get to know her like the last one did. I want to cry when she graduates kindergarten because I loved everyone so much. I want to miss her daily because she just loves school so much and can’t wait to go the next day. I would never tell someone how to do their job or be someone they’re not, but it’s also important to help people know who Reese is. And she’s just so many things that are worth waiting for.

Next stop: kindergarten.

Amanda Skelte the mighty.1-001

Follow this journey on This Year’s Love Will Last

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22 Things Parents Want Special Educators to Know Before School Starts

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As back-to-school time draws near, we know parents have a lot on their minds (and to-do lists). Jumping into a new school year with a new special educator can be daunting for moms and dads. So we asked our parent readers what they wanted their children’s special educators to know.

Here’s what they had to say:

1. “Read the IEP and, as my special educator, please tell the inclusions teachers to read it, too. I do appreciate you… But I am still the parent and we need to be a team.” — Doreen Duran

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2. “Always communicate with parents. We want to know everything going on — improvements, failures, what they’re doing, are they making friends… We want to know it all.” — Corvette Shannon

3. “Believe what I tell you. I am not trying to do your job, I am trying to help you understand my child. If you start off slowly, you can work your way up. If you give him too much, he will break down and you will lose him for the year.” — Tracy Boyarsky Smith

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4. “Our child is complete just the way he is (he’s nonverbal and has Down syndrome and autism). We don’t want him fixed, we just want him to enjoy school and be his best.” — Jill Mayes

5. “The child is a child. They are not their IEP.” — Allie Fread Bernier

6. “We’re partners — a team working on behalf of my child and your student to give him the brightest future possible. Nothing is too small or too insignificant to share since its impossible to know what may effect his day or evening. No secrets, no agendas, just respect and communication both ways.” — Autism and Pizza

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7. “Partner with the general educators.” — Melanie Perkins McLaughlin

8. “Just imagine for a moment if this were your child. Now go and advocate for the special services this child needs. Do the right thing.” — Stacy Sekinger

9. “I’m handing my son over to you, teacher. And when he gets on that bus for the first time, I’ll also be handing you a piece of my heart. Please be gentle with us.” — Andrea ‘Dolney’ Mullenmeister

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10. “Despite your years of teaching and educating yourselves (which are important), we as the parents know our children. We know that the most important ingredient is compassion and tolerance. So please call on that as much, if not more than your skills in academics.” — Nancy De Bellefeuille

11. “Don’t underestimate my child.” — Jessica Barnhart

12. “To communicate with parents about what we can do to help you so we are all on the same page. Be truthful. Don’t sugar coat, and don’t make it worse than it is. See my son as a person and realize he is a child first. I don’t have a manual and I don’t expect you to, either.” — Ronda Landes

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13. “It is okay to have high, reasonable expectations of your students.” — Kristin Boxall

14. “She is my baby girl, and just because I am nervous and tell you things 1000 times doesn’t mean I don’t trust you. I have never left her with anyone before.” — Jessica E. C. Miller

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15. “Please tell me something good my child did each day. I already know all the things she struggles with.” — Laura Sloate

16. “Don’t be afraid to challenge them. They need to know they are capable of doing the same work as their peers (with a few accommodations here and there). I don’t want them to just get through the school day, I want them to learn.” — Kelly Smith Rhue

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17. “I want to ask them, whenever they have the opportunity, to listen to and read the writings of adults with disabilities similar to those of the students they teach. There are so many awesome blogs where people are sharing their experiences and insights from a mature perspective. Some of them are people who had no way to communicate when they were school age, so they may have valuable insights for nonverbal students who can’t yet speak for themselves.” — Cathy N Jeff Jlss

18. “You will inevitably feel like a failure. Maybe not every day, maybe not most days, but there will come a time when you believe you have failed my child. You haven’t. You are not a failure and nowhere in your job description does it say you need to be perfect. Do your best for her.” — Maria Colon

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19. “Breathe. It’s going to be great.” — Kerith Zaccaria Stull

20. “See my child for who he is, not what his disability is.” — Lisa Atkinson Waller

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21. “Never give up on my boy. Please?” — Letto Abraxas

22. “Being an educator — and especially choosing the path of teaching special needs children — isn’t easy, and I know you’re sometimes treated like the enemy by parents and administrators. I understand and truly appreciate that. Please let me know how I can support you, and thank you for choosing to make a difference for the kids who most need you.” — Rebecca Edgerton

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 What do you want your child’s special educator to know? Tell us in the comments below. 

*Answers have been edited for brevity

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5 Things I Want to Tell the World About My Daughter With Special Needs

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When I think about this life as caregiver for my daughter living with multiple disabilities, there are certain things I wish others understood. When I look back on her school years, all the fights (past, present and future) with insurance companies, interactions with the medical community and the world at large, I wish I could give them a guide for helping things have a good outcome. If I could do that, here are five things I would include.

1. School personnel: I wish you would’ve kept in mind that you had my daughter for approximately seven hours a day, five days a week and 11 months out of the year. I had her the other 17 hours a day, all weekend and every school break, including vacations. If I seemed uninvolved in her school day, it’s simply because I was fully involved in the rest of her day, and she needed to have some independence from me, and I from her.

If you judged me when she showed up at school with her fingernails needing to be trimmed or her coat needing to be washed, I wish you would’ve remembered that I had more than just her needs to take care of, and someone else needed my attention. Perhaps I was feeling unwell or just plain exhausted. It’s not that I was an uncaring mother; I am a human being doing my best.

2. Anyone on the other end of the phone: I would like you to realize that if I’m short with you, I’m likely not angry with you personally. As frustrating as your job is dealing with callers who are not kind, you can leave that job at the end of your shift and mine never ends. I’m likely frustrated with decisions made by someone else, and you are just the unlucky person who has to screen my call and maybe deliver the unwelcome news. You may be my fifth call of the day that’s not getting me any answers to a problem that needs to be remedied. If you have called me and I am rude, please understand this.

3. Doctors and their staff: When I contact you about my daughter, please try to keep in mind that I’m not well-versed in medical terms. If you’re not new to caring for her, you know me and know I don’t bother you with nonsense. I don’t expect you to perform miracles. Just take an educated guess at how best to treat whatever the problem is and guide me along the way. I will do my best, but I reserve the right to veto a treatment plan that just doesn’t seem right or necessary. Remember, we’re not trying to “fix” her, just keep her as healthy and comfortable as possible.

4. Insurance companies: I wish you’d see our daughter not as a claim number, but as a person who needs your help. While you’re denying treatment or equipment as you quibble over codes submitted to you by a provider, my daughter is paying the price by dealing with an illness, condition or outgrown equipment. You will go home at night and be comfortable. She will continue to be uncomfortable and at risk until you return to the “claim” and make a decision. Do you like to be kept waiting when you’re uncomfortable or ill?

5. The rest of our world: Please don’t feel sorry for our daughter or us. She’s not a problem, but the logistics of her care sometimes are. If she’s in your way, a simple “excuse me, please” will get my attention and I will move her. You don’t need to try to get around her wheelchair by climbing over it and kicking it in the process. Her wheelchair is like your legs and feet. Please bear in mind when you’re at an event such as a parade, she can’t see over you or through your behind, so don’t stand in front of her. Don’t forget that accidents and medical issues happen every day that can result in disability for anyone — you, your child, another loved one — so please have compassion for those already living this journey.

Lastly, even though my daughter may evoke feelings of sadness in you, she is happy.  She knows only love, and we should all be so fortunate.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

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