What to Say and Not to Say to the Parent of a Child With Autism

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I’ve written quite often about how having a child with autism forces you to have far more patience than you ever thought you could have… but there are still limits. And even though your patience levels can seem limitless for your child, you may find you don’t have the same tolerance when it comes to others or some of the ignorant things they say, whether innocently intentioned or not.

There are a few lists out there of things not to say to us parents, but this is more of a list of things not to say or else you may just push us beyond the breaking point. Don’t worry, though, I’ll follow it up with some things I think would actually be nice to say.

Do not say:

  • Your kid just needs proper discipline.
  • My kids would never get away with that.
  • What made your kid autistic? Was it something you did?
  • You shouldn’t take your kid out if they’re just going to be like that.
  • Your kid doesn’t look autistic.
  • Are you sure your kid is autistic?
  • Why would you have more children if there’s a risk they could have autism, too?
  • Sorry, I don’t really want my child to play with yours.
  • Your kid will grow out of it, right?
  • Autism? That’s like “Rain Man,” right?
  • It must be nice to get special funding or special help!
  • You need to watch your kids better
  • Maybe you’re just bad parents.
  • But all children do that.
  • But your kid was so good for me.
  • Referring to your child with a nickname such as “Rain Man.”

Yes, these are actual phrases I’ve heard or have heard secondhand from parents who told me someone said it to them. OK, now that your blood is boiling, let’s continue on.

Here are some nicer things to hear.

Do say:

  • You’re doing such a great job.
  • I don’t know how you’re able to do so much.
  • Your child is progressing so well; you must be very proud.
  • If I can help, just let me know.
  • I don’t know much about it, but I’m willing to learn.
  • I’ve read some studies and heard the news, but I’d love to hear what you think.

I’d love to hear some good suggestions from you. What have you heard or what would you like to hear?

A version of this post originally appeared on Stuart Duncan’s blog.

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How to Ask About and Understand My PTSD

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When I tell someone I have Post Traumatic Stress Disorder, or PTSD, most of the time I get the reply, “What?”

PTSD means a trauma happened, and even though it happened in the past, the footprint it leaves in your mind is so severe when something reminds you of it, usually described as “trigger,” your brain undergoes extreme stress, expressed by both physical and mental reactions. Sometimes even recalling the events unexpectedly is all the trigger you need.

The mind is a beautiful, crazy thing.

If you still don’t get it, think of this: Have you ever mentioned something attached to a strong emotion, and then felt that emotion as if it happened? Can you remember tasting a wedge of lemon? Or, men: How about watching another guy get kicked in the groin?

If any of these evoked physical reactions from you as you read about them — your mouth watering at the thought of lemon, wincing at the thought of a groin injury (Sorry, fellas.) — then you can begin to see how PTSD works. Your brain, in all its splendor, has stored a physical memory of that thing. Most everything in life we do has a physical and/or emotional memory attached to it. Even if we haven’t done that particular thing before, we’re reminded of a time we did something similar. When these memories occur, we can often feel very physical reactions.

The most commonly referenced example is a soldier who has seen awful things in war. They’ll often come back “shell-shocked.” But it happens in more scenarios than you think.

What PTSD means to me is if I’m minding my own business in my house and the phone rings, my heart races. I get sweaty palms and feel immediately scared and on edge. Of what? Well, there have been times I’ve picked up the phone only to have abuse hurled at me. I would block numbers and people would call from private numbers. I’d pick up the phone and get a nasty surprise. The verbal abuse and associated behaviors of the people who used to do this was so bad, and lasted for so long, I now hate phones. Especially when they’re ringing.

If I hear someone closing their car door outside, I look around to see what kind of car it was. I peer through my curtains, trying to be invisible, to see if it’s the car of someone I don’t want at my door. Every time. It’s because I’ve told people in the past not to come to my house, and they still have. I’ve been stalked before by people who have caused a lot of harm in my life, and I live in constant fear they’ll find my new address and show up at the door. And if they ever do, I’ll probably have to move.

If I see a car that looks like the car of someone I used to know but don’t want around me ever again, I panic. I could be driving and suddenly be paranoid the car I’ve spotted might be following me. I continue to panic until I see the driver is a stranger and not someone I should worry about. For these reasons I memorize license plates.

If my doorbell rings, or someone knocks, I hush the children and try to pretend no one is home until I can peek through the little peek-hole and see who it is. If it’s a friend who has shown up unannounced, I will still only reluctantly open the door. And even then, I’m a bundle of nerves for a few minutes until I can calm myself down and tell myself it’s OK.

When I’m unexpectedly asked to explain why I have PTSD, I’m filled with sorrow. I end up crying in public. Having to recall events can suddenly put me in a funk, and I will stay in that funk for days. Which brings me to perhaps the most important point:

The reason(s) why anyone has PTSD is none of your business. Don’t suddenly ask them about it. You would not serve your vegetarian friend a rare steak. So don’t ask someone with PTSD to tell you why they’ve got it.

When you ask someone with PTSD to explain why they’ve got it, you’re asking them to recall the incident that caused it. That is most certainly a trigger. Like serving a vegetarian a bleeding piece of meat and forcing them to eat it, this is cruelty for someone with PTSD.

This stuff is no joke. Panic attacks are not fun. Feeling out of control of your reactions is not fun.

If I have a friend with PTSD, I ask, “What do I need to know about this?” and let them tell me what to avoid when interacting with them.

PTSD means, because a trigger could happen anywhere, at any time, I don’t go out much. I don’t socialize much, and if I do, I have to force myself to go and put on a brave face. Because people in everyday life don’t understand, and can easily label sufferers of PTSD “crazy,” the best option for many seems to be to shut themselves away. The lack of understanding of this condition, the same as with most mental health issues, is ultimately like delivering a death sentence to those of us who have them.

Although these conditions could happen to anyone, we’re being forced into cages because of luck of the draw, because of ignorance and because of the stigmatization. In these cages we cope, day by day. Is that really living?

PTSD is like a mental scar from an occurrence that caused a mental wound. In order to not open up someone’s scars, it would be wonderful if everyone took some time to educate themselves on this condition.

A version of this post originally appeared on Talking This and That.

For more resources on PTSD, or for more information about getting help, visit Mental Health AmericaIf you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

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When the Kid With Autism Is the Older Brother

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I knew this one was coming. But now that it’s here, I’m stumped.

My boys are 17 months apart — TJ, who has autism, is 15 years old to Peter’s 13. Up until recently they’ve been pretty close to each other in terms of their emotional ages.

Peter has always been aware of TJ’s autism and as a result, has typically taken the lead. He would decide what they would play and how they would play it, and TJ would usually follow with little to no complaints.

But things are changing. And it’s not just the hormones (theirs, not mine).

TJ’s fuse has been incredibly short lately. This is not unusual for the summertime, as his daily structure is kaput. He finds such comfort in his structure that when that structure is gone, he’s much more sensitive and raw and this close to a meltdown more often than not. These past few days, Peter hardly has to say anything to TJ for him to blow up. What’s new about this situation is TJ’s ability to verbalize his reason for the recent blowups: “Peter treats me like I’m the little brother. And I’m not.”

We knew this was coming. But now that it’s here, it’s not such an easy problem to solve.

Peter is used to being the leader. How do we remind him that TJ is, indeed, the older sibling when TJ requires so much more effort to accomplish the simple things Peter can do? Things like walking home from school alone, or talking to a cashier at a store, or even washing his face, require so much practice for TJ to be successful. It’s only natural that Peter feels like the older sibling.

But he’s not.

How do we honor TJ’s rightful place as the older sibling when things are so much more difficult for him?

This is one of those tough issues that takes so much focus and planning on our parts, as their parents. Usually when TJ stumbles, I’m right there with a quick solution so we can all continue on our way.

This one has no quick solution.

So I, as their mom, have to remember this is hard for both of them. TJ wants validation as the older brother, and Peter wants respect for his abilities and strengths as the neuro-typical kid in our house.  

Both positions matter. Both are big deals.

No quick fix exists. I’m dipping my toe into this new pond slowly and thoughtfully. I’m going to get messy and fall in and struggle because I’m not perfect. I’ve never tackled this one before.  

But I do know that even though I will make mistakes, I’ll take this baby step by baby step, with each boys’ hearts and feelings in mind. I’ll do the best that I can. And as long as we can all sit down together and talk things through clearly and slowly, we will find our way.

So off we go — with huge love in our hearts for the boys they’ve been and for the young men they’re turning into. We go forward.

And I know eventually, we’ll get through this one just fine.

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One Simple, Powerful Way to Support Caregivers

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In times of hardship or pain, looking at the people we love can be powerful medicine. Parents and caregivers need to be on the receiving end of the loving and supportive gaze of friends or family too.

Here’s what got me thinking about eye contact: I happened to notice a billboard with a photo of a beautiful but destitute young African woman holding a dangerously thin infant, who was clearly malnourished and distressed. I thought it was so odd that this young mother wasn’t looking at her baby – she was gazing at something in the distance.

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Suddenly, I recognized myself in that mother. Our son Nicholas has severe cerebral palsy. When he was young, he suffered from cyclical vomiting syndrome. Every attempt to spoon-feed my boy ended badly and eventually he received the diagnosis of “failure to thrive.” I felt deeply wounded by my inability to nourish my son. Surgeries and time eventually enabled our boy to overcome his gastro woes, but I recall looking away from him in those dark days as I pushed the spoon toward his tiny mouth. I still feel badly about that.

Eye contact is a powerful kind of hand-holding. Sick people need it, people in pain need it and so do caregivers. Eye contact says, “I am with you. You don’t need to experience this alone. What happens to you happens to me, too.”

When Nicholas was 12, his hip dislocated and the orthopedic surgeon recommended a major reconstructive procedure. Transfusions would be necessary due to blood loss – the surgery sounded invasive and frightening. Nick was listening, holding his breath, wide-eyed. I bent down in front of him and held his hand. I asked him to look at me and I said, “Nicholas, you and I are the same blood type, so I am going to give you my blood for this surgery. My blood will be filled with comfort, with healing and most of all with my love. I will be with you all the time in the hospital to make sure you are fine. I promise.”

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Later that day, my best friend arrived at my door. She already knew about the decision and, in our entrance hall, she held my hands and looked straight at me – not for long but enough to say clearly, “You can do this and I will help you.” She smiled and squeezed my hands.

Caregivers look at their chargers all the time…scanning for signs of decline, bed sores, fevers or for changes in breathing and function. We are expert observers. But we need friends and family to look at us too. I often say that we cannot do this caring and giving alone. We need companions in our loving work. One powerful way to be a friend of a caregiver to look her in the eye.

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A Letter to My Children About My Mental Illness

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To my children,

You may have wondered why I’m not quite like other moms. I get tired easily and haven’t always been there to play. I haven’t taken you to many places. I don’t know what else, but I apologize

When you were very young, I had a psychotic break. That’s when you lose touch with reality. I was thinking strange thoughts, seeing things and hearing voices of people I know weren’t there.

It seemed like it came out of the blue. I kept to myself and didn’t say anything. I was going to work, your father was at home, but no one seemed to notice. People at work asked if I was OK and why I was sad, but that was it.

It wasn’t until Aunt Kim called. You know she’s a nurse practitioner. She recognized I wasn’t making sense and told Dad I needed to see a special kind of doctor called a psychiatrist. He prescribed me medication.

I went to the hospital for a short time. Leila, I know you were worried when I was gone. I’m sorry for about that. I want you to understand so you won’t have to worry if I go to the hospital again.

I have a mental illness. You may be familiar with other words people use like “crazy,” but I’m not crazy. I need medication for my brain to work right. Now, I don’t have those strange thoughts or voices.

I thought I would answer questions as you asked them, but you didn’t ask much. Leila, one day you helped me make a poster for a National Alliance on Mental Illness class. You asked why I was making it and I told you. You just said, “I didn’t know that,” and went back to playing. That was years ago. I don’t know if you remember.

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Recently you made me a friendship bracelet that says DBSA (Depression Bipolar Support Alliance). I thought you might ask something when I asked for it, but you forgot what letters I asked for. I do love my DSBA bracelet.

Jonah, I know you’re well aware of my medication. I take you to the pharmacy sometimes. I don’t want you to worry that I’m physically ill. I recently tried to explain this to you, but I fumbled my words. You didn’t want to hear any more.

I want to say how proud I am of both of you. Leila, you are so smart, talented and pretty. Jonah, you are so athletic, funny and hard working. I always worried I wouldn’t give you enough, that somehow having a mentally ill parent would inhibit you. But you are the greatest kids.

If you have questions, please ask. I know you can imagine things worse than the truth. I want to be honest with you. I don’t want to keep my illness a secret from you.

Love,

Mom

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10 Little Things That Help a Lot When You’re a Special Needs Parent

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A few years have gone by now since my son Jacob’s diagnosis, and although the challenges are still there, I feel like we’re more adjusted to our new way of life. Things are crazy almost all of the time, but I can make plans now and sometimes keep them. I can function without feeling completely scattered. I can reflect back on some amazing things that have helped me get through these times. But, I can also remember some not-so-amazing things.

I hear from many parents whose children have recently received an autism diagnosis and I can absolutely relate to the stress, frustration and fear that comes with it. When friends and family ask how they can help, you become so emotionally overwhelmed you can’t form an answer, much less have the energy to ask for help. So, here are some ways people have helped me that have made huge difference to our family.

1. Instead of staring, ask.

Instead of staring during meltdowns, strange eye movements, hand flapping or when we speak in a funny voices, ask questions. I love to inform people about autism because I want people learn, accept and understand my baby. Don’t feel like there are any dumb questions, either. Asking questions translates to caring.

2. Bring the help to our home.

If you want to help with babysitting, sometimes it’s easier to babysit at our house. People have offered to babysit my son, but don’t realize he’ll be highly agitated in a new environment. But it’s hard to say, “Yes, but can you come babysit at my house?” If you want to babysit, sometimes offer babysitting at our house.

3. Bring the hang to our home, too. 

If you want to hang out, sometimes it’s easier to just come to our house. My best friend often grabs some snacks at the store and then comes over to hang out with me. She knows I can’t leave Jacob much and is so considerate to come here when I can’t go somewhere special. This really helps me to unwind and feel like I’ve had some friend time without having to leave my house.

4. Set up a playdate! 

Make plans between your typical child and our children with autism. This is an amazing way for us to teach our children social skills, and for our kids to feel loved and accepted by their peers. You can also use this as an opportunity to talk to your children about special needs. These are valuable lessons for all children. Don’t be scared your child will mess up or say something wrong. Trust me, as a parent of a child with autism, I’m quite used to awkward moments and tend to be extremely forgiving.

5. Be understanding when we cancel plans last minute. 

This is a biggie. Children with autism often have difficult meltdowns and anxieties in certain places. Many other things can arise at the last minute. Be aware: there are simply some places we won’t even try to bring our kids. For us that includes places by lakes or pools we aren’t swimming in. But, please don’t stop inviting us places. There will be one day we can actually get out and have fun. Trust me, it will mean the world to us.

6. Don’t pretend like they aren’t there. 

Make sure you say hello and goodbye to our children with autism, even if they don’t say it back. In church, there are a couple of women who make it a point to stop and look at Jacob in his eyes to tell him, “Hi.” It’s so unbelievably kind they show him such respect and kindness.

7. Ask questions about our son, but not if he’s gotten “better.” 

Please know answering the question, “Has he gotten better?” is a really tough thing to do. For many families, some things get much better, while a lot of other things start getting worse. Instead, ask how they’re doing or if they’ve learned any cool new things. But, don’t avoid asking how our child is for fear of an awkward conversation. Asking the right questions is a excellent way to show you care.

 8. Instead of research, send us love.  

Please don’t send us research studies or the latest heal-autism-quick advice. Chances are we’ve already read it. I’ve become a research expert and am always reading studies and looking for tools for our children. Instead, send us encouraging emails, prayers or feelings of concern. That really means the world to us. Recently I received a kind email simply telling me someone has been thinking of us, and it made my day. I know I can say the same for my husband. Autism sometimes makes you feel isolated from the outside world, so notes of encouragement remind us we are part of the world, too. People have also reached out to tell my daughter how important she is, and what a great job she’s doing as a big sister. This kind of support makes her feel special and happy.

 9. Cry with us…

This is for our family or close friends. There’s a time to encourage, but you’ll see it in our eyes when we just need a good cry. Don’t say, “It’s OK, don’t worry,” because often that makes me feel like I should suck it up. If you can see I need to let something out, just be there. Acknowledge it’s hard. Let us get it all out. Sometimes a good cry is just what the doctor ordered.

10. …and then help us laugh. 

On the flip side, when I call you panicking about my child rubbing poop all over the window, or when we had to chase him through the house because he refused to put his pants on while a repair man was there, don’t hesitate to be extra silly and help us laugh! This really is what has helped me the most. My best friend almost daily has to remind me of the humor in the situations I call her about. Sure, it’s super stressful and scary, but you either cry or learn to laugh. I love that I can call her and know she’s going to make me giggle about what I’ve gone through that day.

It may not be exactly the same for everyone, but these things sure help us out a lot. Please share if you know someone who may need it.

A version of this post originally appeared on Jacob’s Journey Through Autism.

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