When You Can’t Always Be Positive as a Special Needs Parent

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I try hard to be an encourager. The world needs more encouragers. I especially try to be positive when I speak to other parents of children with autism. Those with kids younger than my son, Tate, need to know that it’s not all doom and gloom after an autism diagnosis.

But yesterday I had a pity party. It began in the dentist office bright and early on Monday morning. We were there because I had “guessed” my son, Tate, had a toothache. He can’t/won’t tell me when he’s in pain. He does feel pain. I am sure of that. On Friday, Tate made a few references to teeth. They were out of place and seemed odd. But Tate has autism. Let’s face it, much of his conversation on any topic is odd.

On Saturday morning, Tate texted me that I should take his brother, Levi, to the dentist to get a cavity fixed. I thought, “Oh, Tate is trying to make a joke.” He hates dentists and thinks he’s sort of insulting Levi by saying something like that. It’s his way of teasing.

But then there were several more references to the dentist. By now I should have caught on. And then Tate did something he rarely does. When I quizzed him about all the references to the dentist, he admitted he might have a problem with a tooth. He asked for a Tylenol. That’s a pretty big deal around here.

So the first thing on Monday morning, I called the dentist’s office and took Tate straight in. I explained to the dentist my son appears to be a young man, but she should probably try to communicate with him like she would with a 5- or 6-year-old. My eyes began to leak real tears. I went on to explain that Tate doesn’t tell me when he’s in pain, so I have to guess.

As the dentist investigated the problem, I sat and thought. When each of my children were small, I had to be vigilant and know when they were hurt based on behaviors. It’s just what good moms do. As my children became older, they could tell me when they were hurt and eventually could take care of themselves. My four oldest children are adults. They make their own doctor appointments and bandage their own wounds now when necessary. They don’t call home to tell me about their minor illnesses. They don’t need me in that way anymore. Tate is not there, though. Tate might not ever be there. Tate will always need me, and there will come a day when I’m not there. I’m 38 years older than Tate.

My pity party wasn’t just about Tate; it was also about me. When my kids were little and got hurt, I hurt, too. A mother’s empathy for her children can cause her to hurt physically sometimes. As they became older and were able to take care of themselves, my empathy for their pain wasn’t nearly as intense. When Tate was in pain and needed me to identify the problem, I hurt for him. I worry I’ll be forever stuck feeling the kind of empathy pains for him as I would have for toddlers.

So yesterday I had an emotional meltdown. Several times in the afternoon, I broke down and sobbed for the Tate I will never know. The man he might never become. I felt really sorry for myself.

But today is a new day. His sore tooth turned out to be related to a broken wire and twisted bracket from his braces, not a cavity. It’s fixed and his pain is gone. My worries about his pain are gone, and my spirits are lifted. Today I dropped my sweet son off in front of his school. As the car door closed I said, “I love you Tate.” I expected to hear, “I love you, too.” Instead I heard, “I know.” As I pulled away I smiled ear to ear, happy that he knows he is loved.

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Follow this journey on Quirks and Chaos.

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 community@themighty.com. 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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To Parents, From the Mother of a Schoolyard Bully

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I was called by my son’s school this week to pick him up. He had been suspended from kindergarten – yes, kindergarten! – for punching another child in the face. Granted, 5- and 6-year-old boys hit. But my son is strong, sometimes stronger than me, and he has fantastic aim. These qualities that make him well-suited for sports also cause injury to his schoolmates. Sometimes, he really doesn’t mean to hurt the other child. Sometimes, he does.

Unfortunately, this behavior is not new for my child. He was expelled from two preschools before I was able to find a fantastic special needs preschool for him that could adequately manage his behavior. Now he has graduated to mainstream kindergarten and, despite many efforts, we have not yet established a 504 or IEP.

I’ve heard other parents talking about schoolyard bullies and, let me tell you, I never once thought I’d be the mother to one. My husband and I have a lovely, stable home. We both adore our son and work hard to parent him properly. My husband is the perfect model of a kind and gentle man. We don’t yell, hit, blame or humiliate.

I know the parents at my son’s school are concerned. They don’t want my son around their kids. He is already being excluded from birthday parties and playdates. And, when I’m supervising him on the playground after the dismissal bell, lots of the moms won’t look me in the eye or talk to me. Whether it’s real or not, I feel judged and blamed. They must wonder: What am I doing wrong to make him behave this way? Why don’t I do something to stop the violent behavior?

His violent behavior is completely unacceptable. And I tell him that. He knows in his head what he is supposed to do and what he isn’t. He understands how it affects people. But he just can’t control his impulses. Deep down, I see the scared little boy who is desperately trying to connect with his peers the only way he knows how.

My son wants to be a “good boy.” I remember one day when I was driving him home from being suspended from his second preschool. He looked at me with sadness in his eyes and told me, “I don’t want to be a bad boy.” It broke my heart.

It still breaks my heart because I know he still feels this way. He wants to please others. He wants lots of friends and needs to be loved just like any other kid. He is only a few months into kindergarten and I fear he’s already being labeled as the “bad kid.” And that is going to affect him deeply. It may even motivate him to act like the child he is being labeled as.

So I want to tell you this: I am working so hard to help my son. I have read so many parenting, psychology and special needs books. I’ve looked for online resources and guidance. I’ve taken parenting classes and asked countless questions of the instructors. I take notes and practice the techniques that I am taught. I’ve taken him to so many professionals: doctors, psychologists, social workers, occupational therapists… you name it, I’ve probably consulted with at least one of them. I’ve completed countless questionnaires about my son’s development and behavior. I worry I’m being too hard or too soft on him, and I ask the professionals about my discipline. Is it appropriate? I’ve recorded conversations with my son about his behavior so I can play them back to those same professionals and get advice. “Did I do that right?”

I’m the mom of the schoolyard bully. Granted, I don’t actually think of him that way. But I know other parents do. And I’m scared, lonely and angry. Probably that’s what my son is feeling, too. I’m scared I’m not doing enough to help my son. I must be doing the wrong things or his behavior would’ve improved by now. I realize this isn’t exactly true. But that knowledge doesn’t protect me from a pervasive guilt. I feel lonely because I don’t have many friends amongst the parents of my son’s peers, and few parents really “get” what I’m going through. When I meet a new mom, I feel the need to apologize. When we’re at the playground and I hear a child crying, my first thought is to wonder if it was because of something my son did.

It’s affecting my work. I have to leave my office at a moment’s notice to come to pick up my son after an incident at school. If the nanny is sick, I have few resources to call on and must take time off of work. My boss thinks I’m unreliable. I could be climbing the corporate ladder, but my energy is rightly focused on taking care of my child.

So what do I want you to take away from this? Please be kind to my child. I’m so, so sorry if he hurts your child. We will help him make amends. Know we are working with him and numerous professionals. He’s a good kid. Really. His heart is good. And I’m guessing he makes your kid laugh a lot. He’s funny and charming.

And please be kind to my husband and me. If you blame us for our son’s behavior, please stop. I blame myself enough and I don’t even think I deserve the blame. If you’re not judging us, thank you. Thank you! Ask us how we’re doing, how we’re holding up. Offer playdates. My son does much better in small groups and one-on-one than he does on a busy playground.

If you’re involved at all in a school, advocate for services. Our public school system is despairingly poor, understaffed and under-serviced. Keep fighting for all of our kids to have the best possible education.

And, please understand this isn’t as simple as my kid hitting yours. There is so much going on emotionally and physically. He’s only 5. He deserves for people to see the best in him and help him make the right decisions. Thanks.

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 community@themighty.com. 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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To the Parents Who Take ‘Disruptive’ Children to Restaurants

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Is there anything more annoying than loud, unruly children in a restaurant when you are trying to enjoy a nice quiet meal? Why do their parents even take them out knowing how loud and disruptive they will be?

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My husband and I went out to a restaurant for dinner to a quaint, quiet place in the countryside. We were near two school-age children for the entire meal. I still have indigestion thinking about that evening now. The two kids should have been in bed — it was a school night after all — but instead their parents had taken them out.

The two children got louder as the evening went by, and I could see the aggravation rising in my husband’s eyes. We came out to enjoy a quiet meal, but instead we were witnessing something from a Looney Tunes cartoon.

The children shouted, laughed loud, shook condiments over people, climbed under the table, squealed loudly, were rude at times and kept standing on their chairs. The mother tried to reason with them but to no avail. One of the children ran around the restaurant and was dragged back.

I looked on in utter disbelief.

The children, surprisingly, ate their food despite moaning about its impending arrival. It was obviously way past their usual meal time, but each parent to their own I guess. When the kids had finished their main course, they demanded pudding. Manners were scarce!

After the kids had eaten, the rampage continued. They started swiping at the grown-ups with their teddy bears. They climbed over chairs, made patterns in the condensation on the restaurant windows and jumped on the back of their mother. At one point, the mother was on lockdown with one of her boys. He had her hair in a death grip. I was shocked. I was disgusted.

The whole restaurant was aware of this family, and it felt a little uncomfortable to say the least.

Why do parents with children like this inflict them upon the public? Are they really this selfish?

Aaannnddd stop.

The kids in this post are mine. The hair was also mine. Would I take them back to a restaurant? Hell yeah! That’s the life of this momma, and as disrupting as it may have been, they were actually pretty well behaved on this occasion. Ha, for real.

Don’t ever be ashamed or embarrassed, ever. Those onlookers know nothing about your children or your parenting skills.

There are additional needs in our family, including, invisible ones, sensory processing disorder and various ongoing assessments for other needs. But regardless, if a restaurant has a children’s menu, the fact remains that all children are welcome.

Follow this journey on Swords & Snoodles.

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 community@themighty.com. 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.

Lead photo source: Thinkstock Images

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26 Messages to People With Mood Disorders, From Their Significant Others

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While love can be complicated on its own, a mood disorder like bipolar or depression (like any illness or disorder) can add another, sometimes difficult layer — challenging couples who love each other despite. And because family and community support is so important, we teamed up with the Depression and Bipolar Support Alliance to find out what significant others of people with mood disorders wanted their loved ones to know.

If you have a mood disorder, or a significant other with a mood disorder, this might help you spread the love:

1. “I forgive you and I forgive myself. I love you. You are absolutely amazing because even when you wanted to give up, you kept trying.” — Andrea Armstrong

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2. “I am by your side. No matter what.” — Michelle Barrett Michelbacher

3. “Sometimes it’s frustrating and difficult, but I love you anyway. I do my best not to judge.” — Jayne Nancarrow

4. “We’re in this together.” — Alan Ball

5. “I’ll always be by your side. Life will have its ups and downs, but I’m on this roller coaster ride and I’m not getting off.” — Sarah Tufrey

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6. “I’m here to support you.” — Grace Mitchell

7. “Be patient, I’m here for you.” — submitted by Stephanie Berger Trzyna

8. “I love you for you, you can’t be anyone else.” — Jessica Barrett

9. “I love you and nothing will ever stop me from loving you. I will be here through everything, good and bad, holding your hand.” — submitted by Charlotte Read

10. “I know it’s hard for you. I’m thankful you try. Thank you for not quitting us.” — submitted by Katie Robinson

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11. “It will get better. Today sucks and tomorrow might too, but try to see the good in everything. Try to remember you’re loved and you matter.” — Melissa Dickinson

12. “I love you no matter what. We are in this together and will conquer this together. In sickness and in health I will always be your side.” — Tina Louise Withrow

13. “I hate your illness, but I’ll always love you. It took me years to separate the two, but we got there together.” — Michael Kenny

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14. “I’m not your enemy.” — Heather Princess Heritage

15. “You loved me when I was in that dark place and I love you when you’re there too. Please get help — I don’t want to lose you to the shadows.” — Amanda Talma

16. “Be strong. Not for me, but for you.” — Jon Biddenback

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17. “There is nothing you could do or say that will stop me from loving and supporting you. I may not have all the answers you need, but I will be with you through the storms.” — Sarah Covell

18. “I’m not going anywhere. No matter what life throws at us.” — Melanie Stewart

19. “I’ll always be here for you. I’m here when you need me. Just promise you’ll talk to me before it’s too late.” — Megan Altorfer

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20. “When you feel like giving up is when you need to let me help support you.” — Jennifer Reynolds

21. “I’ll be there for you until the end.” — Simon Larano

22. “You are always safe with me, even when things are not going well. I will be your support and your cheerleader for life.” — Alinarae Vavoom

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23. “No matter how many times you fall down, I will always be there to pick you back up. You don’t have to hide your emotions from me or act tough when on the inside you’re falling apart. If you needs me, I’ll be there.” — Rebecca Kinnaman

24. “You are my hero.” — Cath Peach

25. “I’ve got your back.” — Jason Whisenhunt 

26. “The best part of you is the real you, the rest is a disease. You are not your disease.” — Chiara Andersen

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*Answers have been edited and shortened for brevity.

To learn more about how to support someone you love with a mood disorder, join DBSA’s I’m Here campaign.

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When Someone Said, ‘We Don’t Mind Kids Like Him’

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On Halloween, we usually gather on a large lawn in a nearby park with other neighborhood families. This year was no different. One big difference was that last year, my son, Carter, stayed in his stroller mostly. This year, he was off exploring all over the park. He was off and running as soon as we got there and I unsnapped his stroller. He had little interest in actually acquiring candy, but he was very interested in his surroundings.

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As he jetted straight for the water, we stopped briefly so he could pet someone’s dog (which he does with every single dog that comes along), and then he was off running again. So I did what I always do: I ran after him. A few minutes later, the owner of the dog came running after us screaming. He said, “My wife says I should give you this.” (It was a flyer.) “She does yoga classes for families, and I watch the kids while she teaches it,” he continued. “I taught special education, so we don’t mind kids like him at all. I mean really, it’s no problem at all. Really, no problem.”

Now for some people reading this, that may seem like a nice thing to say. For me, it felt a little like being kicked in the gut. I was running around the park, not thinking about anything but how fast my little guy had gotten and how beautiful he looked running along the paths against the beautiful back drop of fall. Then, BAM, I was hit with, “we don’t mind kids like him, kids with Down syndrome are welcome, too – really it’s no problem.”

Carter was no longer just a little boy running through the park, enjoying the crunch of leaves beneath his feet. He was the kid with Down syndrome. The kid other people wouldn’t mind, really.

If you see someone with a child who has a disability and you want to ask questions, please do. Most of the parents I know welcome questions. We love the opportunity to educate and brag about our children. But whatever you do, please do not make comments like, “We don’t mind kids like him.” Like what, exactly? Cute, funny, energetic, happy, loving, sneaky? I know you “don’t mean it like that,” but please, just don’t.

Having child who wears his disability on his face is not hard for me, but it can be hard for others to simply see Carter. Carter is a little boy first. Just treat him like a little boy, and just treat me like any other mother of four.

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, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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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To the People Who Call Me ‘Crazy’

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Hi. My name is Sarah, and I have a mental illness.

I’ve lived with panic disorder and depression for my entire adult life. I’m a mother of two beautiful children. I’m a sister, a daughter, a friend and a human being. I’m a survivor, a warrior, a writer, a poet, an actor and an artist.

I am many things, but I am not crazy.

To me, crazy is a derogatory word — a curse word in a book I have yet to write. Do not call me crazy. Call me brave, call me scared, call me Sarah, but don’t call me “crazy.”

I am your neighbor. I am sitting next to you on the train. I am talking to you in the grocery store, or smiling at you as we pass one another on the street. I’m just like everyone else you meet, only I’m not. Because I am living with a significant mental illness that challenges me every day.

My mental illness is like an annoying neighbor who won’t get the hint when you want her to go home. It fools me and tells me I’m worthless. It tells me to give up. It tells me to stop. Go no further. Don’t do that, don’t succeed. You are not enough. You are not worthy.

I fight those thoughts every day.

But here’s the thing. The person you’re sitting next to in a coffee shop might be just like me. Maybe you can’t tell, and maybe they won’t tell you, but people with mental illness are living among us. Often, they feel silenced.

So stop.

Look around you.

And know if you’ve been called crazy, you are not alone.

I’m standing beside, you waving my freak flag high.

Because I’m taking crazy back. You can’t have it anymore.

There is no crazy. Only human.

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about your mental illness. How did you react, and what do you want to tell people who hold his misconception? If you’d like to participate, please send a blog post to community@themighty.com. 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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