Some Days Are Dark

“What do you want others to know about parenting a special needs kid?”

This is a common thread in special needs world. This theme gets batted around frequently on Facebook and the blogs and the newsletters.  Moms chime in, one after another, I want you to know she is a gift! I want you to know how much he has taught me! I want you to know I am better because of them! Included with these joyful, optimistic sentences are photographs of toothy-grinned kids proving to you how sincere their sentiment is.

All of these little positive snippets of special needs parenting are true. Of course, they are. I, like all of these parents, stand in the special needs cheering section with pom poms in hand, shouting so loudly and smiling so brightly that you don’t dare pity me or my son. He is valuable and worthy and I love him with a ferocity I didn’t know I possessed until he came along. This is all true.

But you know how, technically, not saying something is a little bit like lying? We shout from the hilltops about the good without even whispering behind our hands about the bad. It’s starting to feel like lying.

What do I want you to know about parenting a special needs child?

I want you to know it gets dark. It gets really dark, it gets scary dark. It gets I don’t want to wash my hair, I don’t want to meet for drinks, I don’t want to answer the phone dark.

Everyone has a breaking point. I think special needs parents live a little closer to it. There are days I can’t see it at all, but I want you to know there are days I live so close to it I can shake its hand and smell its breath. Hey there, Breaking Point. Is today the day?

The other night my son and I were eating dinner. As I got up to get him more milk, my son said, “B-29 bombers have bombay doors.” It was probably the 500th time he had mentioned B-29s that day. I am not exaggerating. He talked about them at Target, he talked about them in the pool, he flew like a plane to the mailbox, he wouldn’t eat his tomatoes unless he could rename them B-29s, he pretended my car was a B-29, he got angry and punched the counter with his small-boned fist, bruising it, when his therapist made him do something that was not about a B-29.

It’s a form of OCD. It goes hand-in-hand with the autism or the brain damage or the PANDAS or whatever our team of medical professionals thinks we’re dealing with today. Whatever the cause, my son’s narrow obsessions get stuck in his brain, and nothing can pry them out. There are days that there isn’t a 2-minute window without mention of a B-29, and this was one of those days.

“B-29 bombers have bombay doors” was the statement that made me tango with my breaking point that day. I started crying. Standing at the open fridge with a carton of almond milk in my hand, I started crying. I’m talking real, tears rolling down my cheeks, unable to stop shaking, ugly crying. I looked at my sweet, sweet son eating his gluten-goddamn-free chicken nuggets because I will try anything, and realized that this isn’t getting any better. We aren’t making any dents, and I don’t have any more tools to try.

I fell apart in front of my kid. I’m okay with that, emotion is human, but I want you to know that it took everything I had to stop crying and pull myself together. It took everything I had.

What do I want you to know about being a special needs parent?

I want you to know that on most days, this isn’t easy, and on some days, it just isn’t doable. I want you to know that I have a law degree, a nice house, health insurance, good non-judging friends, and yet, even with all of that, I still stood in the greeting card section of a Walgreen’s yesterday and wondered how long I would get to rest in an in-patient facility if I started picking up crap off the shelves and throwing it around the aisles while yelling like a lunatic. I want you to know that the mailman just rang my doorbell and I hid behind my counter because a fake smile might kill me today.

I want you to know that in between the cheering and the optimism and the toothy, grinning photos, some days are really dark.

Sincerely,
Becca

31 thoughts on “Some Days Are Dark

  1. I am rereading this story..as I sit in the dark in my hurricane struck island of the Bahamas. This is some of how I felt on Sunday. In the midst of the hurricane stresses no power little water,limited phone service…there is still ugly dark autism to deal with. God help us.

  2. Dear Becca, You are sincerely amazing. Please know this, your posts give me the strength to move forward some days. And stand still some days. They help me carry on when I want to crumble. So from the very bottom of my heart, thank you. Warmest regards, Jill

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  3. Dear Becca, You are sincerely amazing. Please know this, your posts give me the strength to move forward some days. And stand still some days. They help me carry on when I want to crumble. So from the very bottom of my heart, thank you. Warmest regards, Jill

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  4. Days can be dark, black dark. You can feel so hopeless. It’s a part of our lives we keep hidden away from the rest of the world. So, thank you Becca for helping to shine a little light.❤️❤️

  5. Days can be dark, black dark. You can feel so hopeless. It’s a part of our lives we keep hidden away from the rest of the world. So, thank you Becca for helping to shine a little light.❤️❤️

  6. Thank you for putting my emotions in words. I’m from the Netherlands and have a lovely son with autism. It is all that you say it is. Beautifull and horrably tiring at the same time. I’ve shared your story on my facebook and it makes the people in some cases more understanding. They have absolutely no idea how our days can be. And this makes it a littlebit more understandable. (Sorry for my englisch….but I think you understand what I mean 😉). My greatest thanks, Mijke.

  7. Thank you for putting my emotions in words. I’m from the Netherlands and have a lovely son with autism. It is all that you say it is. Beautifull and horrably tiring at the same time. I’ve shared your story on my facebook and it makes the people in some cases more understanding. They have absolutely no idea how our days can be. And this makes it a littlebit more understandable. (Sorry for my englisch….but I think you understand what I mean 😉). My greatest thanks, Mijke.

  8. I have learned to show the dark and to wear it, i have to somedays just to cope with my sons and even my NT kids. my 16 year old with mild autism is so angry he slapped me the first time in the face so hard on the 4th of July I thought he left a bruise. I suffer from depression, as well as ADHD and somedays even my meds don’t work so i have learned to just screw the world and what they think. I show the dark i go out with my hair not brushed, stained t-shirt, dragging screaming kids because we are out of cereal for Nate. I have yanked the door open to the UPS man before in my pj’s at 3 pm because i was soo depressed and trying to deal with my Parkers obession of the day i just couldn’t get dressed. I don’t have a good support system, it is only me and my hubs. My family lives 300 miles away and don’t really care about us, since my mom’s death i hear from my dad only when he is coming to see his grandkids for the day. My hubs family is around but they have thier own lives and not interested in ours unless it is an emergency.Trust me I have tried meditation, exercise, bingeing on ice cream, binge eating and i have gained so much weight it is scary but still if i don’t show the dark, then i wouldn’t be here to see my kids grow up. I would have walked away along time ago or even worse, but I have learned to embrass the dark and the light. Sure my kids have awesome days, it is not all roses and rainbows either. So open the door and grab the mail with that look on your face, tell the friends I am having a really bad day and no to the drinks out, show the dark, share the dark because if you don’t you will suffer and so will he.

  9. I have learned to show the dark and to wear it, i have to somedays just to cope with my sons and even my NT kids. my 16 year old with mild autism is so angry he slapped me the first time in the face so hard on the 4th of July I thought he left a bruise. I suffer from depression, as well as ADHD and somedays even my meds don’t work so i have learned to just screw the world and what they think. I show the dark i go out with my hair not brushed, stained t-shirt, dragging screaming kids because we are out of cereal for Nate. I have yanked the door open to the UPS man before in my pj’s at 3 pm because i was soo depressed and trying to deal with my Parkers obession of the day i just couldn’t get dressed. I don’t have a good support system, it is only me and my hubs. My family lives 300 miles away and don’t really care about us, since my mom’s death i hear from my dad only when he is coming to see his grandkids for the day. My hubs family is around but they have thier own lives and not interested in ours unless it is an emergency.Trust me I have tried meditation, exercise, bingeing on ice cream, binge eating and i have gained so much weight it is scary but still if i don’t show the dark, then i wouldn’t be here to see my kids grow up. I would have walked away along time ago or even worse, but I have learned to embrass the dark and the light. Sure my kids have awesome days, it is not all roses and rainbows either. So open the door and grab the mail with that look on your face, tell the friends I am having a really bad day and no to the drinks out, show the dark, share the dark because if you don’t you will suffer and so will he.

  10. I like honest posts, like yours. It’s why I love reading your blog. You don’t pretend. You say it how it is and for those of us other mums struggling it helps us not feel so alone. It helps us know that because we have bad days we are not a bad parent. My son is undiagnosed and possibly for him it may be a speech and language disorder rather than autism but the echolalia and using sentences repeatedly and out of context sometimes drives me nuts. We are after all human. As always, I look forward to reading your next post.

  11. I like honest posts, like yours. It’s why I love reading your blog. You don’t pretend. You say it how it is and for those of us other mums struggling it helps us not feel so alone. It helps us know that because we have bad days we are not a bad parent. My son is undiagnosed and possibly for him it may be a speech and language disorder rather than autism but the echolalia and using sentences repeatedly and out of context sometimes drives me nuts. We are after all human. As always, I look forward to reading your next post.

  12. Great, honest post! Thanks for sharing! Oh, by the way, my son’s word right now is “booma”, in the past he’s had many words, such as candle, tornado, paw print, etc. Don’t you wish sometimes you were deaf???

  13. Great, honest post! Thanks for sharing! Oh, by the way, my son’s word right now is “booma”, in the past he’s had many words, such as candle, tornado, paw print, etc. Don’t you wish sometimes you were deaf???

  14. Thank Kimberly Rock for sending me this! I now for the 1st time in 11yrs I am not alone! Becca…. this truly made mercy with relief! I starting to think that I am weak & a poor excuse of a mother!

  15. Thank Kimberly Rock for sending me this! I now for the 1st time in 11yrs I am not alone! Becca…. this truly made mercy with relief! I starting to think that I am weak & a poor excuse of a mother!

  16. Sigh……….sorry. Mine is a pill, but I have never had to listen to B29 info all day, really rough!

  17. Sigh……….sorry. Mine is a pill, but I have never had to listen to B29 info all day, really rough!

  18. Oh mama, I feel you. Because my special needs son is relatively “easy” in the grand scheme of special needs, I sometimes get discounted. Yes, he’s easier in some ways than even a typically developing child, but it is by no means easy! The isolation is tough. I definitely feel you. Hang in there.

  19. Oh mama, I feel you. Because my special needs son is relatively “easy” in the grand scheme of special needs, I sometimes get discounted. Yes, he’s easier in some ways than even a typically developing child, but it is by no means easy! The isolation is tough. I definitely feel you. Hang in there.

  20. I don’t have children but I take a 12 year old with autism and ADHD out for respite each week and have done for over 4 years. The boy I take out sounds so much like your son. He will say the same things and ask the same questions hundreds of times a day. I have witnessed first hand many times when I have gone to pick up my respite boy how worn down his parents are. Your blog is brilliant. Keep up the good work x

  21. I don’t have children but I take a 12 year old with autism and ADHD out for respite each week and have done for over 4 years. The boy I take out sounds so much like your son. He will say the same things and ask the same questions hundreds of times a day. I have witnessed first hand many times when I have gone to pick up my respite boy how worn down his parents are. Your blog is brilliant. Keep up the good work x

  22. I love you. We can alternate days falling apart, I’ll take m-w-f and you can have t-th-sat, Sunday we will be foot loose and fancy free.

  23. I love you. We can alternate days falling apart, I’ll take m-w-f and you can have t-th-sat, Sunday we will be foot loose and fancy free.

I love the comments!