I know parenting an autistic child is hard – because I am that parent. I’ve been so exhausted that I’ve actually stumbled and fallen down the stairs, breaking my tailbone and causing me years of pain that took even more sleep from me. I’ve lost my kid in busy malls and churches and playgrounds because he used to wander away with innocence, chasing whatever light caught his eye. I’ve been frustrated to the point that I’ve had to deadbolt all of the exterior doors to the house so no one could escape, and go into my room and shut the door and just fall on my knees, unable to speak words, sobbing silently for God to help me get through another day. I’ve cleaned up after the daily bowel movement accident that my 8-year-old had, again, wondering if I was going to have to be doing that when he was 18. I’ve sat through the meeting where a school administrator kicked our son out of their kindergarten program because the teacher just didn’t want him anymore. We’ve pulled our family out of a church we loved because our son couldn’t deal with the noise in the children’s church or the worship service. And, God help me, I know more about Stampy Longnose than I would ever want to know.
But, I’ve never been a victim of my son’s brain development.
I watched a video on Facebook yesterday that a friend, a fellow autism mom, tagged me on. It was a video that The Today Show shared that (last night) had about 3 million views, but this morning, already has 11 million views.
This video was about a mom with a non-verbal autistic son who’d had a meltdown at a meet this specific character event (I think it was “Meet Elmo”). So, she was sitting in her car outside of work venting about her son’s future, and how hard it is to be an autism mom, and how she used to wish he’d be a doctor or a lawyer and now she’s just wishing he’ll have happiness as an adult, etc. She admitted that she wasn’t a “religious person” but the night before she’d “actually” broken down and asked God why, but “knew it wouldn’t change anything”. At the end, the tears started to fall when she started talking about how so many work colleagues were at the event and witnessed the meltdown and how she had to go in there now and face them.
I’m convinced that if something ever happened to my husband and I needed to do something to support my family, I could make a killer living as an online private investigator. I am one of those people who just start digging when I find someone interesting. It made my daughter crazy when she was in high school, because I always knew so much about her friends, her boyfriend, her activities outside of our home life, etc.
I have thousands of friends on Facebook, and I’ll regularly just start looking through social media posts, follow links, dig through personal blogs, and just do this internal information gathering over people I don’t even really know. But, then I *do* know them (wink). It’s one of the ways I work through a temporary writer’s block – or maybe it’s just one of the ways I waste time when I’m avoiding writing. Either way.
It’s my way of “people watching” – a TOTAL favorite pastime of mine when I’m in public.
Okay, so back to this mom and her tearful morning sitting outside of work.
I started digging through her blog, and I found a letter of apology she’d written to her husband for all of the ways that being an autism mom had changed her from the young and carefree woman he’d married. It was this terrible dump of all of the resentment she harbors for having a son with autism.
Because, that’s what it is – it’s resentment. It’s resentment that she can really see the difference in her son when he’s around her friends’ children. It’s resentment that so often her husband had to take their younger son to an event because the autistic older son couldn’t go, or she’d have to go and leave the husband, and how it caused a “division” in their family. It’s resentment that he didn’t sleep, thereby exhausting her to the point of tears. It’s resentment that he doesn’t speak and can’t communicate clearly to her or him or anyone around him. It’s resentment that there will never truly be an empty nest in their home because their son is special needs.
On an on this letter went. And for me, it totally colored this morning dump that The Today Show took to over 11 million people. And it’s terrible. It’s terrible that she took her son to an event where he would have a meltdown. And she knew he would, because the letter of apology she wrote to her husband made it clear that he breaks down when he’s in situations like that, yet the pictures flashing through the video are her and her kids smiling through event after event after event.
I’ll tell you something – as an autism mom, I just don’t go. And I don’t care. I don’t feel like our son Jeb has lost out on anything in life because we haven’t been able to go to fairs or carnivals or Meet Elmo, or Lego Palooza, or Engineering Days or whatever, in order to protect his autistic brother Scott from bright, loud, overstimulating environments. Jeb’s favorite singer, Toby Mac, came to Louisville a few months ago. Gregg and I talked it over, decided who would take Jeb and who would spend the day with Scott, because the last thing on this planet that Scott needs is to attend a Toby Mac concert.
Why continue to take him to places where he’s going to melt down? She wondered if at 18 if he would still be violently melting down while standing in line to meet Elmo. WHY, why, why, would she take him again? He has autism. Clearly, that event took him beyond his limits. What if he’d been born without legs? Would she have said, “Will he still be crawling up stairs when he’s 18?” Yes, yes he will be. So quit handing him a set of stairs and forcing him out of his wheelchair!
One of my favorite Ted Talks ever was that of a 12-year-old autistic kid who had been non-verbal for a good portion of his childhood. When he was 4, his parents noticed his fascination with glasses of water. Rather than try to conform him to their world, their world became a sea of glasses of water, filled to different levels. It fascinated him, engaged him, and soon, he was talking. They’d found a way to bridge that gap between their two worlds in a way that most parents (including me) wouldn’t have thought to do. SO insightful. SO well done.
They didn’t create a video of them crying because they had to go to work and face the people who witnessed their son’s meltdown, their son’s crawling up the stairs.
I wonder if the difference is a lack of faith in God on her part. It could be. I know something that strengthens Gregg and I as parents is our absolute trust in God, His plans, His work, and our communication with Him. It could be that we’re not trying to conform to this world (Romans 12:2), so missing out on “Meet Elmo” isn’t going to make or break us as a family. Or, separating children so one child can do something the other simply cannot do isn’t going to destroy us and require me to write a public letter of apology to my husband.
Maybe I have a maturity that comes from being an older mom that gives me more patience and more grace when it comes to who I am as a woman and who my husband is as a man, knowing that there’s nothing about me that’s the same as the “carefree young woman” he married — and if we had totally normal, neuro-typical, perfect angels of children we wouldn’t be the same now as we were then.
Maybe I know that if my son works at Subway (his dream job right now at the age of 11) until he retires, he will be happy and content and successful in our eyes, and that’s okay. That’s good. As long as he loves Jesus and works hard, that’s what matters to us.
I don’t know. But I know this: our son is incredible. He’s quirky and kind and genuine. He asks impolite questions and gets offended over smoking and cussing. He knows exactly how he wants to live his life and tolerates (barely) the things that stand between him and his happy place (in his house, headphones on, YouTube playing on the tablet in his lap, cat next to him).
And we love him and adore him and cherish him and are so thankful to be his parents, to be blessed by God Almighty who has chosen us to shepherd this miracle human being.
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I love and adore you, my friend. Thank you.
I always enjoy your blogs Hallee, they are educational and eye opening. Truthfully I am
Not the same woman I was when I married and I don’t want to be. I’m a mom, and that is not a carefree vocation. It does seem like the woman you mentioned has yet to realize that trying to fit her son into what she views as the “normal” world does them both a disservice. Funny side note: I stopped taking my kids to character events when Mia, who was about 4 asked why Scooby doo had regular shoes on. Lol.
I’ve never been to a character event.
BUT – Jeb is desperate to go to a ComicCon. We’re looking to see when Lousiville’s is this year. Talk about jumping into the deep end. I think we should have been doing character events to work our way toward ComicCon – lol.
Great Post Hallee. I saw the tearful video too and thought many of the same things you did. WHY? Why subject your child to something that triggers a meltdown. They aren’t having fun. My daughter is seven, almost eight now and we never took her to places she couldn’t handle and we left many events early before she had a meltdown to avoid a meltdown. Eventually my friends and family realized I just wasn’t going to stay is she couldn’t handle it. It hurt at first, but then it got to the point where I didn’t care what others thought. We always did what was best for our daughter. #autismmom #Hugs
We have left so many places. #hugs back!
Your an amazing Mom! Love this!
Look who’s talking, my friend! <3
I. Love and adore you, as well as your quirky, amazing, talented, intelligent, funny son!! Scott (and Keb) are truly a blessing from God above ❤️❤️❤️
You are a blessing to them. <3
Such a beautiful post ❤️
Thank you! <3
Im,not an autism parent and I get what you’re saying but this whole post just seems super judgemental its hard being a parent, I can’t imagine what a parent of autism goes through, so if she needs to cry in a parking lot or write an apology to her husband who are you to publicly call her out for that? You could have tried to reach out and offer advise or help(obviously not as condescending as you have written here) other people may not feel as happy about having to miss out on normal things as you are, and those are feelings Toatally normal to have. Their human emotions, there is really not much you can do about feeling it. I’m sure she is a wonderful mother trying to make her whole family happy and just extremely overwhelmed. I’ve never read anything else from you, this popped up as an ad and I clicked on it but, honestly I’m completely disgusted of the whole thing. Parents should always be willing to help each other. Not publicly shame someone for their feelings 🙁
I’m actually more judging the fact that she took her son to the event and her reaction to his reaction instead of judging her feelings. I *can* imagine what the parent of a child of autism goes through, and I *can* see a series of decisions that are a parent trying to force a child to comply to the world around him, then being overwhelmed by the fact that he can’t. That’s where the judgement is. Because it made me angry on behalf of the nonverbal child who has no choice but to respond with violent meltdowns.
But I can see why you are judging my feelings about this, and how I responded to my feelings by writing it out. When you publicly put something out there — emotions, actions, reactions — you’re opening the door for judgement. That’s part of it.
but we really don’t know what he was reacting to. You see pictures of him smiling at the event so he WAS enjoying himself. Maybe he was excited to go but then it got too loud, maybe Elmo was intimidating to him and he decided he didn’t want to be there. Once your there you have to figure out how to handle the situation as it plays out. I have taken my son to events he was really excited to go to, then he got upset over something unplanned and we had to handle a meltdown in front of others. I have had to explain to SO MANY people that don’t have kids with these challenges how this all works and they have NO IDEA. Suddenly there is compassion from them because they really had NO IDEA. The simple fact that you DO have an idea of what this life is like, I would hope you would show more compassion for her TRYING again.
I watched the video, then read A LOT, then rewatched the video and had a totally different filter than when I watched it the first time.
My compassion falls to her heart and I pray that she finds someone in her life to help her put Christ into the center of it.
This is your opinion your writing, based on feelings toward the child yes, but still just your opinion. Where was the consideration for the mothers feelings. I understand you’re a parent of someone on the spectrum from your post, that’s why I was alarmed by you not being more compassionate. I am not a parent of anyone on the spectrum but I cared for two special needs siblings when their moms were at work, one on the spectrum. They always pushed him (in a very loving and sensitive way) and he went,from non verbal which was very frustrating for him not being able to express himself, to a ALWAYS talking, bubbley child! So all I am saying is maybe before you write such a post as this, based soley on your own experience and opinions, reach out and lend a helping hand or listening ear. It could help soo much more than a post made just to make someone else feel worse than their already feeling. You basically kicked the dog when it was already down. I’m not Meaning to nag on you or anything and I am sure you are a wonderful mother as well! But lets start showing some compassion to other moms always(and just other human struggles in general) it seems every time i open up my phone all I see is this new trend of “response letters” which is just so belittling and passive aggressive to me. Lets just send a message straight to the other person right! Something thoughtful and kind like “hi, I see you’re struggling, I’ve been there too. Its hard. You’re a great mom though and if you need to talk I’m here! 🙂 sorry for the ramble, just, I so feel for this lady.
As a parent of a child who doesn’t tolerate every situation the way a “normal” child does (whatever that might actually mean because all kids are different). SPD and ADD and ADHD and Autism, whatever you want to call it. I would have to agree with D. Not every situation allows us to split the family apart and we can’t hide in our house the rest of our lives to avoid an outburst or uncomfortable moment. It is not good for our son to be hidden from the world. Instead we help him adapt to situations. Yes, reaching out to the parent to let them know you understand, have been there, choose to understand their particular situation instead of deciding that there situation is the same as your own. My son HATES to be the center of attention, however he LOVES music and his music class. He loves the songs that he has learned. Getting on stage with his class was something I had decided he would NEVER do and I was ok with that. HOWEVER, with love and encouragement and a good set of headphones, my son was able to actually perform with his class in front of parents. I had tears in my eyes as I watched him because he was so proud that he “DID IT!”. Instead of allowing him to ball up in a corner and never TRY to get out of that box, we gave him the tools to succeed. He has also been petrified of the carousel at the zoo and would not even look at it. Having a fit if any of his siblings ever got on it. However, again, one day it was just me and my four kids at the zoo and 3 of the four wanted to ride (all younger than him). I have put the others off time and again because my son didn’t like it, but this time we just needed to try again. We chose one that doesn’t move for him and I loved and encouraged him the whole way. He rode that carousel like a champ and did not want to get off. He now ASKS to ride it when we go. Does this happen every time with every situation we try? Absolutely not and that is ok. We will try again later. Yes, maybe one day her son WILL go see Elmo. Don’t lost hope on finding what he loves and is excited about. Maybe Elmo is not his thing. My son, will eat drink live BASEBALL. I pray for God’s peace and comfort on this woman with her worn out mind and body because YES I think that she needs his love and YES God’s love has given me someone to talk to when you think you are all alone in the struggle not knowing what to do and how to handle outburts, bathroom challenges, and everything else that goes along with it. This woman even admitted she didn’t have God in her life and so this video has become her crying out to anyone that would hear her. God hears you! Those mess of emotions are running thoughts and are not for us to criticize. I understand the judging looks and the millions of people that are so ready to give us advise on how to handle our kids because obviously (to them) we aren’t doing the right things. That is how the judging and stares make us feel, like we are failing on a stage that we have no direction for. I have even repremanded my son for his actions in a way to prove to others that I WAS handling the situation and then immediately regretted my actions because I shouldn’t care what others are thinking, my son and his well being should be my focus. Some sleep and chocolate hiding in the closet for a few minutes usually helps us to refocus. LOL ….I LOVE my son and all of his personality but a part of me does tear up for the struggles he must endure and that others don’t see his beautiful spirit like I do. I pray to God that HE will show me my son’s potential and what he is gloriously made for.
This is well said.
The video bothered me too. When you know your child’s triggers , why set them up to be overstimulated , overwhelmed , and go into panic mode ?? Then cry and complain about it happening and how it affected you ? What about the child ? I’ve raised my grandson , who has Aspergers, all his life and know what we need to avoid ( when possible ) so he’s not overwhelmed and frustrated. I can’t begin to imagine what his brain and body go through on a daily basis, but I’ll do my best to help him cope and grow so he can be successful at whatever HE chooses to do…. and I sure won’t ever apologize for it !
Hi Hallee, Thanks for this article. I don’t have an autistic child, but I do have an ADHD child. It can be exhausting to say the least. Some parents don’t understand and think I’m a helicopter parent. Sometimes I can explain the executive functioning delays which encompasses his social interactions, his emotional maturity (or lack thereof), and so much more, however sometimes its just not their business to know.
I was looking for the Ted talk you mentioned. Do you have a link or more information? I have searched for it on their website, but can’t find it. Thanks!