Sunday, January 29, 2017

Being An Autism Mom Can Be Lonely






"Come on, Calvin. Let's go away from the naughty boy." The woman narrowed her eyes at me, took her little boy by the hand, and stomped off.

The naughty boy she was talking about was my son. Tommy.


I had taken him to the park, something that I almost dreaded to do, because I knew it would nearly always inevitably end with someone tugging their child away from mine. My son has autism, so being social never came easily for him. When he was tiny, he'd rush over and squeeze the arm of whoever was crying because he couldn't stand to hear the wails. When he got older and began to be able to express his feelings, he told me honestly, "It felt like glass was going across my brain whenever a kid would cry. I was trying to get them to stop, but didn't know how to tell them to stop."

Obviously parents who don't understand the world of autism wouldn't understand why another child was racing over in a panic, grasping onto their child's wrist. Tommy would do this while tensing up, causing his face to shake briefly as if he were cold. But he wasn't cold. He was in pain. The crying from that other child was causing him pain.

Other parents wouldn't get it though. They'd just see a kid touching theirs and would hurry away before I could explain.

"He doesn't mean it to be cruel," I'd say feebly to their retreating backs. "He has autism."



But it wouldn't matter. My kid was the one to avoid. If we showed up to the park and saw parents who had encountered my son before, they'd quickly leave. If they were with friends, they'd mutter something and all eyes would turn towards us before everyone gathered their belongings and children and swiftly made their exit.



It can be lonely having a child with autism. A lot of people don't understand. They would simply refer to my kid as a brat when he'd wail over a tag against his back. They'd whisper and giggle when my son would walk back and forth, back and forth in front of the slide. I'd say, "He's stimming," but I'd be met with a blank look. One lady even bluntly answered, "Whatever it is, it looks weird."

It got to the point where I rarely would bring Tommy to the park. Oh sure, I had friends who understood he had autism, but even they would get annoyed when Tommy would squeeze their child's arm if they dared to cry in their presence. Excuses would be made.

"Maybe come over without Tommy sometime so we can hang out? Just us?"

"Well, my son is sort of afraid of yours..."

"Um, could you come get your son? There's a bunch of boys over here and yours won't stop crying."




I'd like to say things got better, but really, my son always was and always will be socially awkward. He did have another friend on the spectrum. They'd get together, stim, and play in their own corners. But then we moved. Tommy did find some other people who didn't mind his quirks, but then they moved. Now, as a teenager, he doesn't really hang out with his peers. He's not lonely though. No, he communicates while playing video games. When he does this, the people on the other end don't see him rocking back and forth.

Sometimes I take my neurotypical daughter to a larger park in the area. We were there once and I saw a tiny boy walking back and forth, back and forth. The mom was trying to get him to go down the slide. I could see other mothers flicking looks in her direction. I remembered those looks. And so I said to the mom, "Your son is adorable," because he was, with brown hair and brown eyes that were fixated on the corner of the play structure.

She gave me a harried expression. The expression of a parent with autism. We're constantly trying to soothe our kids and keep them comfortable in a world that can be overstimulating.

"Thanks," she said. "He won't go down the slide. He's....well, it's something called..."

"Stimming," I cut in, and she gave me a grateful look. Her shoulders instantly relaxed. She knew I was one of her people. She knew I got it. She wouldn't see any raised eyebrows from me. She wouldn't see judgement.

We smiled, wishing that the rest of the world could be just as understanding.

Maybe someday they will be. Please remember, if you see a child at the park doing something that you think is unusual, wait before you judge. Remind the mom that she's not alone.



Because we're all just trying to do our best.

68 comments:

  1. This post is incredible and I hope hope you know how amazing you and Tommy are. He is such a sweet boy and it makes me sad that so many are quick to judge especially without asking questions.

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  2. I agree with Jen, people are very quick to judge!

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  3. I can't believe how judgmental people can be. Tommy is an amazing kid and I love how he's using his YouTube channel to connect with others and teach others about autism too!

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  4. I had a similar incident. It doesn't feel good, especially when you know all kids have their moments.

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  5. Great post and I love that you spoke to that mum in the park. Autism is so complex and unpredictable and I can only imagine how challenging it can be for a family. Well done you for still taking those risks to give your family the best life. Nikki x

    www.twentysomethingmuddle.com

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  6. Don't feel sorry for the situation. You have an amazing child, and think about the moments that they missed and those moments that you have.

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  7. Great post, Autism is a challenging. My husband and I work as a photographer in some school and we see all these child with Autism. They are a lot of work, but definitely worth because they create memories with you.

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  8. What a fantastic post my heart goes out to you and other mums in the same situation! Parenthood is hard enough but this is an extra weight and you've communicated it beautifully. Hats off to you and your lovely family xxxx

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  9. People are so mean these days. I am sad to hear that you are lonely. I have deep respect for any parent that has to deal with autism. If you were in Charlotte, we'd come out and play. I think kids need to be exposed to all types of children so that they get a better understanding that not everyone is like them. I want to teach my son to understand before judging. Cheers!

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  10. This post makes me sad. People are so ignorant towards one another and don't stop for even a second to learn about each other. I hope that you have more positive experiences in the future.

    Beth || www.TheStyleBouquet.com

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  11. I'm sorry. I'd like to think that if my girls and I had met Tommy that I would have been understanding. I know that I will be if I meet a Tommy now.

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  12. In this day in age, you would think that people would not be so judgmental. I'm not sure why another parent would have the nerve to utter out of their mouth “naughty boy” some people can be so insensitive even if she didn't know. That's still not an excuse.

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  13. I'm sorry that you have to go through the social negativity in a public space. It is rude make comments like this in public because that mother is only teaching her son to view autism with negativity.

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  14. That is so sad to hear how much people don't understand. It is the same with my little sister. She was williams which is similar to Downs as well as autism and has to use a wheelchair sometimes or a large pushchair. So many people look at her and give us dirty looks because she does not look disabled and they nasty things when in reality she has so many problems. She will never learn to talk fully, although she knows a few phrases, has a hole in the heart and has the developmental age of a two year even though she is 7 years old. I really feel for you xx

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  15. Aww this post brought some tears to my eyes in the end. I cannot imagine how isolating it must feel! I think we all need to remember to have more grace and patience. These opportunities were also missed opportunities for the parents to show their kids what autism is and that it's okay.

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  16. Thank you for this eye opening and sincere post. It was very enlightening.

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  17. I am so sorry you and Tommy had to go through all that. Elias has autism too. He is 4, and trust me.. At the park, I am the mom shamming others raising my eyebrows. Oh heck no, they don't get to judge my son with their ignorance. You guys are NOT alone.

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  18. How sad that people who don't understand, don't consider it worth their time to learn more about your son & his/your struggles. My younger son's babysitter had a Downs syndrome child in the group & it was great for all the kids to learn how to play with him ... best learned when they're younger but everyone should grab these opportunities to become smarter & more supportive of others.

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  19. "Whatever it is, it looks weird." ?? What a troll. I would have said, "That's how I feel about your face, lady!" Because I'm rude.
    I get stimming a lot. I'm always going to know to not alienate an autism parent or make them feel awful or awkward.

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  20. I'm a nanny with a friend that looks after a teenager with Down syndrome. Taking the group of children out together is so awesome! Until another child's parent gets involved. It's hard work helping the children I look after understand why this happens. I love this post

    Rebecca x

    Www.londontoeverywhere.com

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  21. I can feel your frustrations. While my oldest son did not have autism, he did have social issues and would be over friendly with touching other kids

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  22. Wow, I am so sorry that you went through that. I cannot even imagine how lonely it is to have a child with Autism. You are so strong for your little man.

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  23. It must be awful when no-one understands. My nephew has just been diagnosed with autism and it's amazing how much there is to learn about the condition! I'm trying my best and hopefully others will too! Stay strong for him!

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  24. It's difficult when other people do not understand. That is why these blog posts are important so other people are aware!

    https://lovekimber.com/

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  25. I'm so sorry that you and your son have to deal with such narrow minds. You are both amazing and don't let anyone ever make you think differently. I have witnessed many hateful things in my life and try to do what I can to stand up to those people. Keep your heads up, not everyone is like that.

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  26. oh man I wish they had more community groups for moms with kids with autism. It's definitely a different ball game and and the encouragement is so important.

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  27. Ugh people can be so mean and judgemental! This post is brilliant, thanks for sharing. As others have said, it's so important to raise awareness but also to increase solidarity - you're not alone and Tommy is a brilliant son! :) Claire x

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  28. God! You made me cry a little bit with this post. We never know what happen with a mother and her kid when we judge them for something. You have to remember that you are not alone!! We are all in this together with you! <3

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  29. I can only imagine. You are such an inspiring person! So strong. I am sure you have "those days" but I also know the joy that little one brings you too. I have a daughter with mild cerebral palsy and that was tough finding groups, places, she could fit in and enjoy life. I wish you all the best love.

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  30. This is beautifully written. I just want to hug you and your baby. I am happy you were able to provide comfort for another parent who was experiencing the same unkindness. I wish you both well and I am praying for you.

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  31. It is true. We live in a world of judgment. But don't let you be affected by those kinds of people. Always remember that the ability to observe without evaluating is the highest form of intelligence.

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  32. I have had mom's apologize to me when theit child has talked to me. I tell them it is fine. I was once educated on the different sprinkler systems it was kind of neat because it was obviously something that he was interested in. I certainly didn't have a clue.

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  33. Thanks for bringing more awareness to autism. I think it's something that we are starting to encounter more and more in society though. I think as the public gets more knowledge about it, it will get better. Who knows how long that will be though. Thanks for sharing your touching story!

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  34. I love reading this blog because in reading it, I feel less alone in the strangeness of my youngest daughter's quirks. And I learned a couple of new strategies for helping our family cope as well, which is always appreciated!

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  35. Ugh and they are just kids! I can only imagine. You would think the love and sweetness would be enough to share the innocence of a child!

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  36. What's wrong with people? It just sucks how many bad experiences you've unjustly had. It's amazing how cheery and creative and giving you are.

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  37. It brought tears to my eyes when you talked about connecting with the other autism mom at the park. I'm sorry it's been so lonely for you. I have a few friends with autistic children, but I never recognized the loneliness. Thanks for helping me try to pay more attention.

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  38. It makes me sad that some people can be so judgmental! I have a special needs cousin and my niece's daughter has lissencephaly. Autism is a complex condition and children diagnosed with it need all the understanding not only from their family but from society. I wish I could be with you right now and give you and Tommy a big hug!

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  39. I don't have experience with this one because we don't have parks here where the kids can simply hang out and play. I think it's sad that other parents would judge so rashly than think about the other parent or their child. I hope that someday, people will be more understanding about the kids who have autism, they need a little more support when it comes to social places like the park.

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  40. What a great post. Thanks for sharing. You can't ever really know why kids (or parents) are acting the way they are if you don't know them, so it's a good reminder not to judge with limited information.

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  41. This is a very touching article. Great job.

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  42. There is so much more support out there. No reason to feel lonely. You got this, stay strong!

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  43. I'm really emotional today and this almost made me cry... I can't even imagine how you feel hearing all these stupid comments :( It's sad that people do this. I can be judgy sometimes but I'd never say anything like that, I'dd first give you and your son a chance. If they did they'd see how amazing both of you are. Please hang on, I believe there are people who'll see that out there!

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  44. From what I read, I can feel the heartache that you get when people avoid your son because of his condition.
    You are a strong person such that God entrusted you with the task to care for this child!

    Keep up the good work, we (all the readers) are behind you and I'm praying for Tommy!

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  45. I am absolutely saddened by this. A lot of people are so quick to judge and they don't even try to look at the child.

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  46. I have a daughter with Autism as well. It can be do frustrating when other parents don't understand. As a mom it's hard to see them struggle socially.

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  47. This post gave me all the feels. I can't understand fully what you've gone through, are going through but thank you so much for these posts and letting us into your world.

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  48. I'm sorry you have to go through that. People are mean, and sometimes need to look at things beyond what they are use to. Thanks for sharing, its good to know what others go through, it can help others see different perspectives

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  49. This sounds so hard. You are such a strong person

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  50. My heart breaks for you. I have children with special needs (autism included) and know how it is. It is tough.

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  51. Such an amazing post & I love how you are handling everything as an autism mom so easily though I know its going to be harder inside the heart. People don't understand others problems and we just need to move on hoping for the positives ahead!

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  52. Reading this broke my heart! You're a wonderful mom and I wish other parents would stop to think for one second before assuming a child is a "naughty boy". I have two friends with autistic children and I always mae sure that I'm there for them because I now it can be hard.

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  53. I salute your love to your son! I hope there could be some programs to promote more on autism awareness so they could easily understand families like you.

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  54. My nephew has autism so I've seen how others behave around him. He's a great kid and I love spending time with him (he has lots of lego). I think education of the public is needed so they understand more.

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  55. You and Tommy are incredible. That woman should be knocked upside the head.

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  56. What a fabulous post! I completely understand that incredibly lonely feeling parents with autistic children have having friends in the same boat! Ignorance is bliss I suppose and I think in this day and age we all need to have an open mind and not rush to judgment when we see things that are presumed odd! We're all going through something. Sometimes it's important to ask, why is your child doing that, in order to get an explanation as well as a valuable life learning experience. I am grateful that my children were able to see past the label and see the heart and soul behind the autism where they have made deep lifelong friendships.

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  57. He's adorable. The first paragraph made me so mad, "naughty boy?" Really? Shame on them. As an autism mommy too I feel your struggle. I hate the park ha, not because of kiddos being mean or ignorant parents (we haven't encountered much of that thankfully) but my son (4) is a runner. I can't keep up with him and I lose it when he runs away from me. It's just so scary. I do get looks and have even been asked by a parent if my little guy was ok. I feel immune to it all now but we've only been on this road for a few years. There's much more to come. You know, when I tell people that my son is autistic, you know the response I get? They tell me their child is autistic, their sister is autistic, their grandchild is autistic. I feel like because it's more known today, maybe people will be more kind, I hope so anyway. Keep being a great mama!

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  58. I couldn't much relate to this world, but what I only know is , you are an amazing Mom and and a super woman to your family :)

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  59. I have 3 friends with autistic children and I see that it is a daily struggle for them. I have 3 kid and always want to protect them, so I get where you are coming from. I also think no one will ever completely understand unless they have to walk in your shoes! Hang in there you sound like an amazing momma!

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  60. This post is phenomenal. Thank you for sharing your story and helping me to understand autism.

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  61. I love your post. The more parents chose to share about the struggles and truth of autism the more others can learn from it. I think we have a long way to go before the stigma is gone but it shouldn't be kept a secret. The only way people learn and are exposed to different things is by others speaking up and sharing their stories.

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  62. My sister son was just diagnosed and I know the struggle is real. We can all learn for your words. Thank you for your honesty; I plan to share this with my sister

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  63. That sweet face is irresistible! You are so brave for sharing your feelings, I know it can't be easy.

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  64. This is a touching post. I had no idea just how judgmental and not understanding other people can be.

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  65. Girl you made me tear up. It breaks my heart that people remove their kids from playing with other kids and are judgmental. I know Tommy isn't little anymore, but my goodness he was an adorable toddler!

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  66. It's so wonderful to share these stories as it's important for others to understand.

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  67. I really wish that people could be a bit more understanding. You never know what is happening with other people, and unless they are hurting someone else, it just isn't a stranger's place to judge. Seems like you are super strong though, and hopefully writing about this stuff is somewhat helpful as well. We all support you. <3

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