heartburn
What follows is not a particularly joyful post. If you want something pithy, click here.
———-
Ben ran away last week.
I didn’t tell you about it because it’s hard to talk about autism on my blog because there’s always someone whose best friend’s sister’s boyfriend’s girlfriend knows this guy who knows this girl who knows this kid who has this brother who has autism, too. And SHE heard that removing gluten AND standing on his head for sixteen hours a day made him normal again.
That’s awesome for that family, truly, I’m happy. But like any other condition, there’s a million different variations and this is MY kid we’re talking about here and this is our story. And, I should add, I DO want to hear about your children and your stories, Pranksters. I do. I promise.
Why, Aunt Becky, did your son run away? I can hear you practically screaming at the computer monitor, cup of coffee clenched in your hand as you shiver with antici…..
….pation.
The answer is: I don’t know. HE doesn’t know. All I know is that he decided, upon returning from my mother’s house where he had been spending the morning while I worked, that my (technically also his) house was bullshit and he’d rather not come home and so he took off.
His brother informed me, “Ben ran away,” and assuming Ben had just stomped off to his room, I wasn’t terribly worried.
Until I couldn’t find him in his room, slouched petulantly in either car, holed up in the basement reading a book or lurking around the exterior of my house.
It was then that the blind panic set in. I drove down the street, the bitter taste of adrenaline coating the back of my tongue, as I looked left and right, hoping to spot my son somewhere; anywhere.
I found him, his mop of dark hair a stark contrast to the white snow, a body all elbows and knees, trying to cross a busy road at the edge of my subdivision.
I pulled over and hollered at him to get into the car, and he did. He peered sheepishly at me through eyelashes as long as his sisters as he buckled his seat belt.
For once, I was at a loss for words. I just gaped at him.
I drove us home and still, I said nothing. I didn’t even know what to say any more. I knew where he was going and why. I know my son well.
Rejection started when he was born. I waddled into the birthing room as one and a mere twenty-four hours later, we were two. The nurse helped me get him to my breast, and I swear I’ve never seen a more pissed off baby. He launched his gigantic head atop that tiny neck backwards, nearly toppling off me, clearly disgusted that someone might even SUGGEST such an uncivilized thing as BREASTFEEDING.
Breastfeeding didn’t work. Bottle-feeding only worked if I didn’t hold him. I’d put him in his bouncy seat and sit next to him, holding his bottle as he watched anything but me. The guilt was tremendous. Maybe Ben sensed my inherent evil or something.
My mother didn’t help. “I’d NEVER let a baby sit on the floor while taking a bottle,” she’d say to me as I fed my child. But I’d already tried to cuddle him closely, only to have him scream like I’d poured molten steel on him. Maybe she’d never let her baby lay on the floor to feed him, but Ben was not her baby.
The older he got, the worse I felt. The pain was exquisite. It was compounded when I enrolled in school full-time to earn my nursing degree while working part-time as a waitress/bartender over the weekends as I didn’t see my son much.
He didn’t care.
I, however, cared very, very much.
My heart shattered each time I’d stop and think about The Situation With My Son Ben. I was rearranging my life for this tiny boy with a shock of black hair so thick it looked like a wig and he hated me.
These were the days, you must remember, that autism was not commonly discussed. No one walked, ran, drove, pledged, or otherwise attempted a “cure.” ASD, PDD, SPD weren’t on the lips of every mini-van driving soccer mom. In 2003, when Ben was diagnosed at age two, I was on my own.
I was also relieved by that diagnosis. Autism.
The concept of autism didn’t send me reeling, I guess, because I’d already been reeling for so long. Knowing all that rejection wasn’t because I was an evil soul-sucking wench of a mother was such a relief that I cried. Then I stopped making it about me and got my kid into therapy. Loads of it.
Autism is, after all, just a diagnosis. And a diagnosis is just a word. I wasn’t going to let that word rule my life.
And I haven’t.
The pain of rejection, though, that never seems to go away. I love my son just as he is with every inch of my heart. I always will.
I sat there, my heart hurting and my hands numb from the cold as I drove the two of us home last week. I sat at my computer trying to eek out a half-hearted Christmas post, forcing jollity out of my fingertips. I sat there trying to pretend I was okay, that the pangs of rejection didn’t burn brightly in my chest, and I remembered that sometimes, as my throat burned with threatened tears, it’s okay not to know how I feel.
It’s okay to wish that it was all different somehow.
Then, my first son, Ben, without whom I would be nothing, approaches me with open arms and says, “I love you, Mom,” and I know that even if I never understand any of it, it’s all just as it should be. And that has to be enough.
Yeah, so get this post. Let’s be best friends.
I’m in. I could use a BFF who gets it.
Thank you for this
I so get it. I have four girls. ONE of my identical twins is Autistic. One thing I am finished trying to do, is “explain it”. They all give me equal amounts of joy, my girls. But little Finley breaks my heart more than the rest combined. But it’s MY issue, mostly. Not hers.
I think you’re allowed to be broken-hearted about it. My heart has broken a million times and no doubt, it’ll do it a million more. Sending you a big hug.
I breastfed them both for 2 years. Same diet, same DNA. I live my life halfway between panic and resolve. She’s a “runner” and we live very near a lake. Our security system is like Fort Knox, but she’s pulled a couple of escapes that have really sent me reeling. On top of that I work- and travel fairly often. Imagine the judgement…..
But she’s phenomenal. And looking to the “I love you’s” keeps us all going. hug back.
It just has to be enough. We have no other choice.
But the escapes, those, those are going to drive me crazy. Ben lacks common sense and I’m not sure what to do. I’ll come up with something. I’m nothing if not resourceful.
“I love you, Mom” THAT is something. whew.. no words…
Hugs
Very moving. At the risk of sounding like an ass, that made my uterus hurt. Keep doing what you do!
Wow. Your pain rocked me in a way that I can’t describe. I can’t even begin to imagine what life is like for you, but I give you so much credit for holding it together.
(((HUGS))). This is a pain and fear I can’t get my brain around.
My Girl Child is HOH (hard of hearing – but not deaf) and it’s this strange in-between land that few people really *get*
Mom pain is the sharpest and bleeds the most.
My child is Deaf – but has a cochlear implant so she calls herself HOH.
If you want/need perspective, please feel free to contact me…
Wow – thank you. My daughter isn’t a candidate for a cochlear implant – she was born with a birth defect called Atresia/Microtia. Which means she was born without an ear or ear canal. Her left ear is “normal” (hate that) and her right ear is HOH. Surgery corrected the hearing partially, but not entirely. Four surgeries later we’re still figuring out what that means and how to deal with it and help HER deal with it.
(((HUGS))). I’ll get in touch.
Whenever you’re ready… (((HUGS)))
Can I email you about this? I know a guy whose son had this AND had a corrective surgery last year to deal with it. He’s closed his blog, I think, but he’s a friend and a great guy. Let me know.
Maybe parents have a tough time, but I had a friend who was HOH when I was a kid. She told me that I needed to look at her when I talked and that she couldn’t hear me when we were swimming because she had to take out her hearing aids. Maybe technology has improved on that second point? In any case, it doesn’t make much difference to kids once they’re big enough to understand.
Holy Shit, Becky.
We love you, too. Peace.
Holy Shit, Becky.
We love you, too. Peace.
Oh, Becky. Ouch.
For you, mama!
http://www.youtube.com/watch?v=Cj8ud8gUzwg
Skip to 2:50 for heartburn đ
Just to make you smile since I know that was a hard one to write. I’m glad you found him safe!
Thank you for this post. I am a speech-language therapist and have worked as an autism consultant for my school district. Your honesty is inspiring and I plan to forward this post to some of the parents with whom I keep in contact. I have done so many autism evaluations where parents swear that the autism is caused by the diet, or the vaccinations or whatever. Upon questioning, it almost always starts to come out that when their child was a baby, he/she was similar to your Ben in some way. As cliche as it sounds, your son is so lucky to have you for a mom. And you are lucky to have him too.
Oh Becky, that is heartwrenching. I have a 3 YO daughter who is a complete mama’s girl. She only wants me. Daddy will beg for hugs and kisses, and sometimes she’ll grace him with one. I always feel terribly for him. But I know that the day will come when she won’t prefer me to him. She’ll become a daddy’s girl. And she will hate me for at least 5 years (probably ten, though I’m praying for a shorter stay of execution). So I try to cherish each frustrating demand for Mommy. And this week it happened. I was the one she wouldn’t give a hug and kiss, too. I was crushed.
I say all this to acknowledge that I cannot imagine having a newborn who would reject me right out of the gate. I have other friends with Autistic kids who have the same reaction to affection. It truly breaks my heart to hear that, and I’m always amazed at how strong their love is for their child. You are all heroes to me.
Dear Aunt Becky, I can’t even begin to imagine what you’ve been through. My baby didn’t like breastfeeding and I know what THAT bit of rejection felt like, so I know you must have hurt unspeakably. I’m sure that still hurts, even though you know it wasn’t really rejection and it wasn’t really hate. Oh, what a joy Ben’s affection must be, when he can give it! You must be the world’s best Mom. Not everybody can love through pain, but it looks like you’ve been able to. Ben is a lucky young man.
HUGS!
There is no question that being a mom is the hardest job in the world, ever. I can’t imagine how it feels to be Ben’s mom, but just by him coming to you and telling you that he loves you, you MUST be doing enough.
Hang in there, Mama.
Wow.
This is a fantastic post. I know all to well how it feels to have this brand of heartburn. My son doesn’t have autism, he has mental health issues, and even though he’s 5, I know that this will be a lifelong, roller coaster journey of rejections (of me) and love. Well written, mama.
As a side note: Rocky Horror reference, totally rocked my socks.
Xoxo!
I love that you don’t try to fix him. Just love him and help him. That’s a huge deal!
As you may or may not remember and I don’t expect you to remember everything but we are BFF’s and all LOL. But my oldest daughter has Asperger’s and this touched home. I don’t understand it all either and I never will. But it is as it should be, because it’s all that it ever has been. So that is what I tell myself. So I cry tears for you and Ben because I understand and I don’t. And I hope that makes sense.
I don’t think any of us will ever understand autism or Asperger’s Syndrome, not truly. But I believe that we are united and that we are all going to be just fine. Our children are perfect just as they are.
(of course I remember you, my BFF. Your daughter reminds me of my Ben so very much)
No we won’t ever understand their syndromes, but yes they are perfect just as they are. Because that is exactly how they were made. And I know no other life but the one I have with her. As difficult as it is at times. It too has it’s rewards. And your Ben reminds me so much of my daughter they are very much alike it’s funny that way. How The Syndrome is so different but they can be so much alike at times.
I do find so many times where I think, “she is so perfect! I envy the way she is wired. she doesn’t have to deal with the bullshit. she’s so literal. when she gets in the laundry hamper for 30 minutes or so, we just go- “oh- she needs some boundary time”. last week I asked her how she felt. she said, “not as soft as a bunny!”
diagnosis suck. they are hard. like, i KNOW my baby isn’t completely normal, but aren’t we always holding out hope that maybe you’re just crazy and neurotic and your kid is fine and YOU’RE the one with issues?! diagnosis, for me…made it more real. not autism. but i don’t know that i’ll ever get used to seeing words like “cerebral palsy” and “epilepsy” in the same sentence as “jill”. ugh. being a mama is so hard. and everyone thinks they know it better, don’t they? especially those who only see a doctor for well baby checks and the occassional flu like symptom.
hang in there. it’s always worth it in the end, right? đ
Tears… Thank you for sharing your private hurt with us.
Thank you for reading it. You’re a good friend and a loyal Prankster. I’ll never forget it. xo
Wow – no words.
K
Thank you, my sweet friend. I heart you for everything.
I’m glad you wrote this post Becky. Thanks for it.
Thank you for reading it. Just. Thank you.
I DO have friends with autistic children, on varying ranges of the spectrum. I would never presume to tell someone else how to parent, but I can certainly tell you that I can feel the love for your son and the pain in acknowledging his struggles. You’re a good mama.
I wish I could give you a big hug. Even if Ben isn’t a hugger, he’s got you wrapped all around his heart and he’s wrapped around yours. It just has to be a different kind of hug, I guess.
SO glad you found him and he’s OK.
We do Air Hugs in my house. That seems like a fair alternative for us all.
ASD’s are so different for everyone and the difficulty in parenting children with autism can be so very unique. It’s hard to understand that uniqueness sometimes.
It’s what makes it so hard to open up about our struggles with autism, you know? It’s too personal for me to want to open myself up for an attack. This is my SON, not some random person on the street.
I need to get over it because I know I’m not alone and I have to stop pretending I’m an island. I’m not.
My heart aches for you. I have felt probably only a fraction of the pain from my son’s rejection as you have and what I dealt with was terrible. So the biggest of hugs to you. My son is not autistic. He just preferred my husband and his baby sitter to me. And I couldn’t find anyone who had a similar situation. I would go to pick him up (when he was less than a year – still breast feeding) and he would howl and cling to my sister (his baby sitter) the minute he’d see me. ME who would walk through fire for him. He’d go willingly to his dad… Tears in my eyes remembering it. And yet I know that your pain is still continuing so I know I was lucky.
Rejection is rejection and it’s all HORRIBLE. I used to remind myself that people had their kids in daycare or with baby sitters and that it didn’t make me a bad mother to have my kid prefer his mobile to me.
I don’t think that rejection ever goes away. Ever. And I’m sorry you had it, too.
Reading through this – with my own ASD son sitting about six feet away – I couldn’t help but think of how fickle this thing can be, how so few people it touches are affected the same way, and how despite the fact that your Ben and my son fall into the same (or similar) diagnosis, they are clearly very different people. And my heart throbbed in fear and anxiety as you recounted your son running away, and in gratitude that my son has never done the same. And it throbbed in sympathy and understanding as you recounted the heartbreak of those early years. And it throbbed in memory at the passionate declaration of “It’s a diagnosis; not a definition of who he is or who he’ll be.” Or how it would affect our lives.
And then I hit this line:
“Itâs okay to wish that it was all different somehow.”
And it was like my heart burst with recognition. That even with your son coming to hug you. That even with my son sitting six feet away, happily watching YouTube videos as I try to work. That even with all the different flavors of ‘it’s okay’ we watch come and go, day by day. There is still that part of you that thinks… well, to quote an article from today’s Boston Globe about a child with a very different set of challenges:
âYou have this pathway he should have taken, and the pathway he did take, and you donât want to look at either one.ââ
Wishing that it was all somehow different. Yeah. I know that one.
/comment hijack
This was a perfect, beautiful comment. It made me cry. Not an ugly cry or anything, just a perfect one. I get it. I do. And it makes me wish I’d had my Pranksters back then to tell me I wasn’t a bad mother.
I’m glad he’s home safe, sweet pea. Squishy hugs.
I am so glad he’s home. Oddly, I haven’t chained him to a bed somewhere, but I did think about it.
I have no words besides to send you a cyber hug.
*HUGS*
I wish I had something witty to pick up your spirit, but alas I am freshly out.
Cyber hugs are perfect. I’ll send you one right back.
He does love you. Of course he does and he knows you love him and that is even bigger. Keep doing what you’re doing. ?
Yes, he does love me. Very much. He’s a great kid. Thank you so much.
Very touching!
Very touching!
“just a diagnosis. And a diagnosis is just a word. I wasnât going to let that word rule my life.”
Your words are the sound of my heartbeat. No, I do not have a child with Autism, this year I was diagnosed (a word) and I told myself from the beginning that I would not let it (breast cancer) define who I am or let it “rule my life”
I enjoy reading what you write and laugh out loud at each post. This one was different, maybe because I had a picture of your son among the orchids in my head, for whatever reason, I thank you for every word.
PS find a way to build him a greenhouse of his own, he’s happy among the plants, you can see it in his eyes.
It’s hard when there are so many connotations associated with a word to not allow it to pervade all of your thoughts. I’m rooting for you on this end. Let me know if you need anything from me.
And I’m so building a greenhouse.
Aunt Becky, I love you. Hugs to you and your boy.
I don’t have any words to make this all feel better. I wish I did. But know that your son loves you and so do thousands of other people. Always here for you.
I am in tears reading this… because I just KNOW. You are a rare gem indeed to write openly about how you feel; when there is autism in a family, it’s always about the kid. Here us moms stand, knee-deep in guilt, hurt, rejection, and all those other emotions we squelch down, it doesn’t mean we don’t feel them. Much love!
I am in tears reading this… because I just KNOW. You are a rare gem indeed to write openly about how you feel; when there is autism in a family, it’s always about the kid. Here us moms stand, knee-deep in guilt, hurt, rejection, and all those other emotions we squelch down, it doesn’t mean we don’t feel them. Much love!
You’re a really good mom.
For what it’s worth, from one stranger to another.
Wow….really well written…moving….there are no words. ((Hug))
Wow….really well written…moving….there are no words. ((Hug))
Wow – incredible post. Thank you so much for finding the strength to write it. As a mom of a kid with an ASD (and SPD, and maybe ADHD? We’re not sure? Yeh.) I feel you when you talk about it being ok to wish that it was all different. Sometimes that’s the worst – for me, anyway – and the most guilt-inducing part: Wishing it were all different. Somehow it feels like a betrayal of the person my kid *is*, to wish that he were sometimes not that person. That sometimes he could be the kid who could sit in class without needing constant reminders and prompts to sit still, do his work, concentrate, just do the problem because we know you know how, you’re a smart kid, you’ve done this a thousand times, and….
Yeh.
So thanks for writing this. It helps, more than you know.
Thanks for sharing!! Hang in there.
I always do. I’m good like that.
[…] This post was mentioned on Twitter by Aunt Becky. Aunt Becky said: Here's the post that I had to work up the nerve to write. It's about my son Ben, who is autistic: https://mommywantsvodka.com/heartburn […]
I am glad you found the brave. This was so touching. Thank you for sharing and I am sending you big hugs as well.
*HUGS*
I needed to let this out so that I could move on. I find if I don’t write about stuffs, I can’t move on with my life. And I had to move on.
Ok first off…Rocky Horror=best movie ever!
I haven’t been able to get on here and read in quite awhile(stupid broken computer) but TGIphone I can now. I’m glad this was the first post I got to.
You totally make my eyes leak when I read this. My 4y/o Gage is on the spectrum too, diagnosed at around 18mos. I was reading this post while watching him lovingly line up his Thomas trains and it just made my stomach sink like a rock thinking of him running away. I could just imagine how you felt! On the other hand though, hearing him tell you he loves you is awesome! I know how hard it can be to not get the affection and attention from someone you so badly want to give and get it from. It can be a daily heartbreak that not many people truly understand.
Ok first off…Rocky Horror=best movie ever!
I haven’t been able to get on here and read in quite awhile(stupid broken computer) but TGIphone I can now. I’m glad this was the first post I got to.
You totally make my eyes leak when I read this. My 4y/o Gage is on the spectrum too, diagnosed at around 18mos. I was reading this post while watching him lovingly line up his Thomas trains and it just made my stomach sink like a rock thinking of him running away. I could just imagine how you felt! On the other hand though, hearing him tell you he loves you is awesome! I know how hard it can be to not get the affection and attention from someone you so badly want to give and get it from. It can be a daily heartbreak that not many people truly understand.
It’s hard to explain the heartbreak that it causes to be rejected over and over.
My Ben LOVES to line things up. It cracks me up.
The running away, notsomuch. I’m amazed I haven’t chained him up to a post somewhere because that was so beyond awful. I still haven’t processed it. I don’t even know what to say about it.
Hi! I get that a lot of people don’t know what you’re going through. My son was diagnosed at 4 and things weren’t nearly as bad. I just wanted to ask as it wasn’t mentioned. While autism cannot be FIXED, there are many interventions that help with some of the symptoms and, depending where you live, they may or may not be available. We had tremendous success with brushing and hearing therapy to deal with my sons Sensory Integration Issues. If you would like to discuss any of this, I can recommend some books or talk to you myself. Just an offer. My son is 17 now.
Good luck!
There are so many wonderful interventions. EI was so important for us and helped Ben out in ways I didn’t know any therapy could help. He went from being non-verbal to an incredibly expansive vocabulary in a relatively short amount of time.
I’d love some book recommendations, though. Always looking for some good reading.
i am not a mom of, but an aunt and cousin to 2 children who have autism. my cousin Paul has PPD and I felt a disconnect the moment I first held him in my arms at two weeks of age, at 9 months he didn’t cry when his mother left him with us, at 2 years when he would watch spinning objects and tense incessantly. as an early childhood educator, all of these things worried me, but as a family member, my heart broke thinking that his mother would never have him as the child she undoubtedlty dreamnt her firstborn would be, that he would not be the fun little baby cousin we were all waiting for. but in the same breath, i realized that our expectations and hopes for him were not important anymore, all that mattered was keeping him happy, even if that meant giving in to the all orange food diet and the desire to ride up and down in an elevator all day long. he may not be what we expected, but he is all that we wanted and more. he is an amazing young man.
my nephew is 17, non verbal, almost non communicative, his mom had him at a young age when she was still living in the phillipines. when he slipped away at age 2, after hitting all of his milestones, she was told that it was her fault that her baby was “sick” and that her husband cheated on her. she was always too guilty to put him on medication or do anything but give in to his every whim, he was in diapers until age 10. my brother met her and fell in love with both of them. he was integral in helping her start to realize she was not at fault and helping her deal with him in more constructive ways. he stood by her as others gawked when he would bellow in the middle of the store, flap his hands wildly in people’s faces. the first time i met him i was asked to watch him for some hours. not just me alone, but my sister, father and uncle as well. by the end of the day we were all exhausted. my years in education meant nothing, and i truly felt heavier frustration and defeat than i had ever imagined. i cried when he left, guilty for not knowing how to relate to or care for him. i can only imagine i felt a tiny bit of what his mother endured for years.
these experiences have showed my family, for one, the meaning of patience and understanding. any family touched by autism would agree that yes there is unbearable pain at times, but the love so greatly outweighs it.
thinking of you and your lovely son with the beautiful ‘picture” smile. you did a lot of things right. *hug*
xoxo
lis
Marrying The Daver and having Alex were the only things that kept him here, I think. I don’t, of course, know this, but I think that he could have easily slipped away from us. I’ve fought hard to keep him here and I’ve succeeded. I need to remind myself of my successes and not my failures sometimes.
Your first nephew Paul sounds exactly like Ben. EXACTLY like him. He had a White Things Only diet for a long time.
Your 17-year old nephew breaks my heart into a million pieces. I’m so glad your sister has a wonderful husband now to help them both. It sounds like he’s getting the love he needs. I’m glad.
xo
It’s hard when your kid has a more common diagnosis like autism or cerebral palsy (or epilepsy). EVERYONE knows someone with cerebral palsy! WHY, if you only did THIS, you’d have cured CP!
*sighs*
I suppose that’s where I have issues discussing Ben’s autism and the issues that autism brings. It’s not that I don’t want to hear stories because I do. I really do. I love the stories. It’s what connects me to others and what reminds me I’m not alone.
But Amelia’s encephalocele is rare…and no one knows anyone with an encephalocele (not most people, anyway), so I don’t have to hear the preachy people tell me how I can just do this and wave my magic wand and POOF! Ben’s suddenly managing to cope more easily with this! I’m able to have more patience!
I don’t think a magical diet of dairy is going to fix anything.
And I’m sorry, for what it’s worth. Diagnoses can really suck sometimes.
I don’t really know what to say here, other than “I’m sorry your heart hurts and I wish I could fix it all for you”. In other words, the same sentiment expressed much more eloquently by so many of my fellow Pranksters. But I guess joining in a “we love you” pile-on is a lot nicer than any other kind, so…*jumps in*
This line “Breastfeeding didnât work. Bottle-feeding only worked if I didnât hold him”. Me and my kids exactly, especially my first.
After our now 17-y-o was diagnosed, at 5, (again, long before there was an Autism spectrum) – we had friends tell us we just needed to parent better. And it wasn’t one friend, there were many. It was awesome and we were so grateful for their insight. It was really helpful.
Anyway – you’re right, every situation is different and we’re just happy that even though he is still “quirky” that he is having some typical 17-y-o like problems – now that really is awesome!
Love your blog and will have some vodka for you tonight with my chicas!
Wow. Your words really moved me. Prayers and hugs!!! And lots of love!
OH Becky, I’m so sorry.
I can so identify with what you wrote about being rejected by Ben. Even though my Paddy is neuro-typical, he rejected me hard at birth. In his defense he had terrible colic, and my mother was the only person who could calm/soothe him. We did eventually bond somewhat, but he has rejected me again because I’m not the fun one, that’s daddy. đ
(((HUGS)))
That rejection just never gets easier and I’m sorry. You don’t deserve it. You’re a wonderful mother, Heather. I’m sorry. Paddy loves you in his own way. Much love.
I think anything I say is going to be inadequate, but … Thanks- for the beautiful, life-affirming honesty of your post.
Thank you for reading it and reminding me that I’m not alone. Honestly, sometimes I just need that to keep on keepin’ on.
Oh Aunt Becky Giant hugs!
Glad Ben is home safe & sound!
ME TOO. That was so terrible. I’m still…just….woah.
I totally relived the Panic while reading! (When Bri was 3, Joe was deployed & I was 9 mos pregnant w/Robert, she just disappeared!! I called her name. nothing! I ran outside to see a small, white car pull away from my street & I screamed her name so loud I thought I would go into labor right there! She can running from the driveway crying! OMFG it was the scariest moment!!)
Ben is in my thoughts and prayers.
As are you.
*Freaking hard hug*
*You know the kind, where you really aren’t that into it but the other person just goes for it and you awkwardly stand there waiting for them to let you go but they don’t because they clearly don’t understand normal hug etiquette*
*That kinda hug*
Oh, Becky. I wish I knew what to say. I can’t offer any heartfelt or amusing anecdotes, but I CAN offer some long-distance Canadian love and unconditional support.
Anyone who reads your blog can tell that you’re an incredible mama, and even if he can’t show you most of the time, Ben knows it too. <3
I’m so sorry. I truly know how hard it is. I’ve gone through so much with my 11 year old. It is so hard to deal with, but I deal with it because he’s my son and I love him. I have dealt with stuff from mild to the extreme. I have two broken teeth from one time a guy called my son a “retard” at the park, right after he had just been diagnosed. I punched him in the jaw, he proceeded to use some sweet boxing practice on my face. It wasn’t one of my proudest moments. Needless to say, I’ve learned to cope with it other ways but it’s always hard. I don’t think it ever gets easy.
I dont know what to say. Except you are a good Mom, and big hugs.
Oh, Becky. You are truly an amazing woman, you know that? I wish I had a tenth of your strength. But remember, you don’t have to be tough all the time. You’re among friends here. So feel free to fall apart occasionally…we’ll catch ya. Promise. Big hugs to you.
Oh, Becky. You are truly an amazing woman, you know that? I wish I had a tenth of your strength. But remember, you don’t have to be tough all the time. You’re among friends here. So feel free to fall apart occasionally…we’ll catch ya. Promise. Big hugs to you.
Dear Aunt Becky… This is a beautiful post.
The year before we moved to this place for grad school, I worked as an inclusion aide with a boy who was on the autism spectrum. Several boys, actually. I think I understand a little bit.
Ben is so lucky to have you, as a mother and as an advocate. You have an amazing family.
XOX
sue
My heart just broke for yours so it can take a little breather. While I can’t imagine what you’ve been through, my strong sense of empathy can and I am feeling anxious and very heartbroken from rejection right now.
your post definitely hit home for me too. After my son was diagnosed with Asperger’s, I felt a huge wave of relief. Then, just like you, I brushed it off and said, what now? He’s the same kid, but now there was just a name to his behavior. And it’s so hard for other people to “get it.” Big squeezy hugs to you and Ben (my son loves those kinds of hugs).
I don’t have the beautiful words you do, so i’m with michelle *jumps in the love fest*
And, if you are an island, can I come too? Maybe some cabana boys with umbrella drinks will be there!
(((hugs)))
I always try NOt to comment when you write about Ben’s autism because I don’t get it, not in the same way that someone with a child with autism might. But I sometimes *think* I get you, so I needed to stop by and show you some love. Such as it is.
You do get me. More than most, I’d suspect. So thank you. That meant a lot to me. xo
*hugs*
Yes, I cried .. and then wished every child in the world could have a parent or parents who loves them this much
~Eric
You made me cry, dammit.
My heart ached just reading this post; I can only imagine how it felt living through that event. My daughter, while diagnosed as “normal” (whatever the hell THAT is), is….um….high strung? Spirited? I would love to find something positive other than calling my lovely child “soul-draining.” I only know what I live with; I can only imagine your roller coaster of emotions. My kid has AA (alopecia areata); an autoimmune disorder that is slowly but surely causing her hair to fall out in visible patchy areas. It doesn’t help that she has anxiety about things like the weather, let alone why her hair isn’t like other kids. I recommend the shower for crying, bedtime for sobbing, and a nice sturdy punching bag in the basement for when you want to “work out” – meaning punch something that you can’t punch in real life. Hang in there Aunt Becky; you’re doing better for Ben than you probably feel like you are. From one mom in the trenches to another…
I really do need something to throw at the wall.
i can empathize with your son since i too have autism and i did that to my parents mutiple times when i was little just ran off it gets better i know
Sorry you had such a scare! And that things are so heavy for you. I can’t begin to imagine your journey. But I am happy that this story ended well. Thanks for sharing. Hugs…from a perfect stranger.
Sorry you had such a scare! And that things are so heavy for you. I can’t begin to imagine your journey. But I am happy that this story ended well. Thanks for sharing. Hugs…from a perfect stranger.
Sometimes, unloading my burden by letting it out through my fingertips like I just did, well, that’s enough. So thank you for listening to me prattle on. Much love to you.
I can’t imagine this pain, but I’ve had people tell me they could never imagine poking needles into their kid everyday, as I’m injecting her with the life saving insulin I am so thankful for. Mommies do what we have to do. It doesn’t make it any easier.
Exactly. That’s exactly it. You just do it because you do it and it’s always been this way. I don’t allow myself to wallow because it’s not worth it and it doesn’t accomplish much. But there are days that are harder, you know? Of course you know.
I don’t know anything about autism, but I think this much is true: the rejection is nothing personal. I know that doesn’t make it hurt less, but try to keep it in mind. Everything must be done in his own particular style and that includes loving his mom.
You’re a great mom who is doing a really tough job very well. But I hope you have no more heartrending incidents like this.
I wish he had any common sense. If he did, I’d feel a little reassured that he could handle himself in the world, but he just…he doesn’t. I don’t know what to do. Honestly.
*sighs*
I’ll try and teach him. But how do you teach that?
If you figure out how to teach common sense, people will be beating down your door for that information! All you can do is try to give him as many tools as possible, show him how to use them, and hope some of that sticks.
You know you’ve got a million Pranksters pulling for you, praying for you, etc. It’ll be OK. đ
Big cyber hugs!! My neuro-typical son ran away when he was 6 not just because he was a spoiled brat (seriously, long story but grr). I can still remember the fear and panic that set in when we woke up that morning and he was gone. It’s been almost 7yrs ago but it’s still fresh in my mind. Luckily a cop found him and brought him home before he was hurt but he got over a mile away.. So I feel your pain & fear. I’m so glad that Ben is home safe & sound. {{{hugs}}}
That’s so scary. It’s all so hard sometimes. Being a parent, man, it’s hard.
(((HUGS))) to all of you Pranksters parenting kids with/without diagnoses.
When my Beanlet was diagnosed as deaf, I remember the relief of the diagnosis well. I remember the fear attached to it too.
Parenting is hard enough. Add in a dash of special needs – of any kind – and it’s a whole different ballgame. But in this ballgame, you are suddenly first-string, starting, forward in the middle of a game you’ve never even watched, let alone played. And expectations are high. And, now that it’s out there, you don’t actually know what a forward is supposed to accomplish in this game. Because the rules and the goalposts and the strategies keep changing.
When I was going through the diagnosis process, someone pointed me to this article on special-needs parenting: http://www.our-kids.org/Archives/Holland.html
It might be cliche at this point: I don’t know. But I cried when I read it and still cry when I think about it. I thought the brave, amazing parents here needed to see it too.
Aunt Becky: you’re strong and brave and amazing! I am in awe of you all the time… this is going to suck sometimes. And that’s okay. And it’s okay to feel that pain. Just keep on loving and trying and doing your best for your kid. I know you’re an amazing Mom. I can see it all the way from the Northwest… you’re doing great…(((HUGS)))
Thank you, love. Thank you. Just. Thanks for being my friend and my Prankster. I’ll never forget it.
Thank YOU, Aunt Becky! It’s a privilege and an honor and the pleasure is all mine.
BTW: Would you mind if I designed & embroidered a Prankster Badge? I’ll give you 1st glimpse đ
Are you kidding me? I’D BE HONORED.
I love you. Thank you for even considering that.
This is my first time reading your blog, and holy forcing jollity zizznit, this blogging autism mommy-who-doesn’t-talk-about-it gets it. Thank you for your honesty.
Maybe this dipping-my-toe-into talking about it a little will help me talk about it a little more. Maybe it won’t. But you know.
Sometimes, you just can’t fake it anymore. I’m tired of forcing it. So I’m not.
Beckster,
I can totally feel the pain coming out of this post. While I don’t have a child with Autism, I have one with severe anger issues and another with ADHD. Sometimes they are the best kids in the world and other times I want to run off because I think I am a terrible mother. I also don’t have the support of their father, but luckily have found a good husband to reassure me. Thanks for all your posts- sad and funny. It makes us know you are human.
I think special needs kids are alike in that they’re all so different. And parenting them makes us all feel like we’re bad parents. I still feel that way. Every day. And I know better. I really do.
Much love to you. I have to keep it real now and again, you know?
You are his mother who keeps him safe and loves him. That will always be enough for him. Thank you for sharing!
http://www.pampersandpinot.com
I always read and usually don’t comment, but today, I wanted to add my support along with all the other Pranksters. It’s heartfelt posts like these that make this blog more life-changing than practically anything else on the internet. You reach out with your pain to everyone who reads in order to join with those who recognize the same in themselves, or help those who don’t share your experiences to understand a little of what it might be like. I have to thank you for that. This helps me understand things beyond my own experience, at least a little. And it helps us to know how to be as helpful as possible to people that go through these things: don’t try to FIX or “help” anything, just be loving and supportive and accepting. Thank you for teaching me that. Keep doing what you’re doing.
Sweet Aunt Becky,
You are so right! Rejection never goes away. Regardless of which direction it comes from… I do pray that you continue to have the strength to NOT listen to all the great ideas thoughtless people have for how to raise your child. I’ve never believed that you are never given more than you can handle — hospitals are full of people who couldn’t handle what they were ‘given’ but you do have an inner strength that most others don’t, and that’s going to help you in raising Ben. {{{Hugs}}} and I’ve got some Vodka chillin’
My daughter died from Ewing’s Sarcoma 24 years ago and it’s still hard. I finally wrote about her last Christmas, today, on my other blog. We love our husbands but our children are a part of our souls and never really leave.
You said you were interested in books. Have you read any of the Temple Grandig books? Check them out.
I am so sorry about your daughter. I cannot imagine the pain of losing a child and I’m sending you all the love in the world.
I’m with you: I DO believe that sometimes we’re given more than we can handle. But I WAS given a voice. So I will use it to help those who have none.
I’m going to get Temple Grandig’s books. She sounds like my Ben. So very much.
Yes, read the books. See the movie (Claire Danes is phenomenal). Felt like I really understood my son a little better after reading them and seeing the movie. She’s a great writer in showing the way her mind works.
Wow. I can relate to this. Only a lot smaller. I’m not a mommy, I don’t plan on being a mommy, but I am a caretaker of two little boys. Crazy, insane, adorable little boys. B is 8, and on the spectrum. C is 6, and recently diagnosed as ADHD with a sprinkling of impulsivity disorder. Yeah, I’ve got my hands full here. I get bit usually once a week, by B. It’s a defense mechanism or an outburst. He particularly hates it if you take away something he really likes. Like the computer and Google Sketchup. Seriously, if your boy is at all into planes or trains or building? This thing is like CRACK to them. But when I walked in yesterday morning after being off for a few days for the holiday and having both boys run up to me screaming “Miss Katie!! Miss Katie!!” and being smoothered in hugs? Well, that makes it worth it. It makes those days I go home and cry a little easier. Right now we’re on school break here, as I imagine lots of kids are, and WHOA! it’s HARD! But, I know that next week they go back to school, and schedules, and that makes it easier. I’ve talked before about my boys here. I love them. Not quite as if they were my own, but pretty darn well enough. And I still get tested. Heck, I’m pretty sure I get off easy here. Mom and Dad definately get the worst of it, but, most of the time I just hum the “Facts of Life” theme song and try to keep moving on. It reminds me that even bad comes with good, and it doesn’t matter what’s going on right now, because in another minute or so, it’ll be completely different.
You take the good
You take the bad
You take it all
And there you have
The facts of life
Wishing you and yours all the best! And lots and lots of hugs. Sometimes they just make it better.
oh my GOD, I can only imagine your terror…. hugs to you!!!
My daughter (2 1/2) has ALWAYS liked my husband better, it all started when she was so little, had horrible reflux and Mike could hold her “just so” and she would calm down… I would sit identically to him, use the same pillow to prop up my arm and she never got comfortable (My husband joked back then that it was my boobs getting in the way)….. anyway they spent many many nights in recliner sleeping like that together so she could be upright and comfortable and I think they bonded so much during those times, that I just don’t hold a candle to him, in her eyes. Sure I say home with her and she loves on me when he is not around, but the moment he is around she will have little to do with me. Most of the time I don’t take it personally, after all she misses her Daddy when he is working, but at family get togethers I always wonder what my extended family must think, of the girl who NEVER seems to want her mama.
Many many hugs. And much much love.
Wow, it is really hard to think of anything to say (type?) but I wanted you to know that your story touched me. I may not have any children, and have never had to live my life around someone with autism, but in my heart I know rejection, and I was touched by you, this post is full of heart, and i am glad to have gotten the chance to read it.
I’m not a mother, so I can’t yet appreciate what this felt like for you, but you wrote it in a way that gave me a peek. Let me feel a bit of that terror, of that pain.
And if I could drive all the way across the country to hug you right now, I would. No questions asked.
In my personal experience, when something is “differnet” about your child, the not knowing is far worse than the knowing. When you have something to call it, some reason other than YOURSELF and your parenting, it changes everything.
((hugs))
Just abiding by that pain. Even though I don’t know yours first hand, reading your words and about Ben helps me understand a little. You speak of him with such deep respect and love, and so I am just sending a deep love and respect for both of you. xo
First of all, so glad you found Ben and he’s home and safe and sound.
Secondly, thanks for writing this. I’m forwarding it to my sister as soon as I finish this comment. Her 4 year old son, my nephew, was *just* diagnosed with autism last week (Merry Effing Christmas, eh?) and they are still reeling. I said to her when she was crying on the phone to me last week “You know, this diagnosis, this label, this doesn’t change him. He’s still the exact, same kid that he was before you got that report.” But sometimes it is hard to hear those words and labels and she needs to realize, as you so eloquently put it, that “Autism is, after all, just a diagnosis. And a diagnosis is just a word. I wasnât going to let that word rule my life.”
Lastly, (((hugs))).
I was a behavioral therapist for 2 years. It was the best time of my life, learned so much from the one kid I had. He and his family are often on my mind.
Thank you for not turning this around on him. That sounds like a no-brainer, but my cousin’s bitch-whore-fetid-cuntbubble ex-wife does that. The kid is diagnosed both high-functioning autistic and ADHD, and when he takes his pills and has solid structure, he’s awesome. That’s too much trouble for her, which resulted in my mom getting a phone call one day from a frantic 10-year-old whose mother had brought him in to the hospital demanding that they lobotomize him. He’s mostly living with my cousin now, and he actually ran up and hugged me on Christmas eve as soon as I walked in. Best. Present. Ever. Let the little moments count, even if they’re directed at others.
Hugs. As an Aunt to an autistic child and mom with children who have special needs of a different kind, i get where you are coming from. I won’t promise it gets better and it may never get easier but know that you make such a difference in Bens life, even if he is unable to tell you so.
I know how hard this was to write – I’m glad you did though đ
Becky. I’m so glad you’re brave enough to be the mother you are. You were in my prayers this morning, and I’ll just keep you there.
I am so glad your son is safe and sound. As someone who is trying to figure out her son (don’t ask about my insurance struggles to get someone to see and test him) I can appreciate the comfort of a diagnosis, because at least you know.
I also think that some of the therapies might work for some kids but like putting vicks vapor rub on kids feet for a cough, it does not work for everyone.
I am so sorry. I wish things weren’t so difficult. I am very glad you found him and that he is safe.
First time commenter says you’re a pretty amazing mamma.
That is all.
I get it. My son is Autistic and my mother doesn’t get it… No one does not even his father. It sucks the life out of me daily. I don’t try to explain I don’t try to make sense of it. He was given to me for a reason and I can only do my best and hope it’s enough. Most days I think he hates me but once in a while I get the opportunity to make a connection and in that moment I know he doesn’t… He doesn’t get this any better than I do and he’s only doing the best he can for me too. Thanks for posting. x
*gulp*
I have no words, but know that I’m holding you close in my heart and wishing I could take away your pain. ((HUGS))
Thank you for sharing this with us. It must be hard to sit and put yourself out there. Your pranksters love you, Aunt Becks. You’re an amazing, lovely woman. (And your RHPS reference made me giggle.)
Oh, Becky!! Fuuuuuuuuuuuck! How insanely scary. I know it’s hard for you to write about Ben’s stuff. So glad you did. You needed to get it out.
Ben! Listen to your Aunt Dora. Your mommy loves you sooooooo much. Daddy Daver loves you. Alex and Amelia love you. Please stop scaring the crap out of them. Oh, yeah, the internetz love you, too.
Well shit, Becky…this made me cry for you. You are a SUPER mom. I have tons of friends with kids on teh spectrum…from mild to severe and you are ALL heroes to me. My heart goes out to you and all the moms like you. You’re rocks stars!
I’m glad you found Ben and he was safe. And the “I love you,” well, that makes up for it a bit, doesn’t it?
thank you for sharing. i dont have children, but i want to someday and i know as with all things, anything can happen. it gives me strength looking into the future, that love is what matters above all else.
I’m speachless. I’m not sure what to say except that you are a wonderful mom and your son (and other children) are lucky to have you. Thanks for sharing and I’m so glad you found him and he was safe. đ
I know this was a hard post for you, I am glad you made it and I hope you now feel a little relief. You have a lot of kind and thoughtful readers who are willing to cry with you as well as laugh. That is very heartwarming. Thank you for stepping out there.
I’m glad you found your bravery to write about this.
I’m glad he is home safe.
I love love love the photo of the three of them!!!
ok, so I’m going to pretty much suck right now because I’m going to use your post as a way to vent, to feel like I’m not crazy, I’m normal …. even though I want to punch people in the neck.
My stepson…I hate that word, my ‘loaner’ son I suspect has aspergers, he was diagnosed with ODD …. whatever, I’m sure that fact that he has food texture issues and the fact that he can’t stand tags in his clothing, he wets his pants at 11, etc etc is nothing …. he’ll grow out of it as his mother would like to believe….anyway, I made a serious faux pas ….. I was frustrated that we are taking a trip to disney world next week and in a conversation i made the heinous mistake of commenting about the dining reservations I make that I have to consider aforementioned loaner sons food issues….if the menu doesn’t include chicken fingers or cheese pizza we would be fucked…..and not in a good way .,… ok, so it wasn’t a ‘comment’ it was a frustrated snarl, maybe even a slight hissy ….I’m sorry….is it wrong that I’ve been dreading this trip? knowing all the while that as the stepmom I have all the responsibility and none of the rights?
Take care Aunt Becky ….. love ya
There are no words. Just love.
And I’m glad that he is home safe….with your love.
I hurt that you hurt.
And you tell us what you want to tell is when you want to.
This isn’t the Washington Post. You don’t need to share because “the public has a right to know.”
You share what you need to, when it’s right to.
And, I hurt because you hurt.
And I wish you did not.
Awww Becky – I’m sorry. That has to go down as a very bad awful no good day. I’m so glad that you found him, safe. God bless.
I can’t even respond to this without sounding like a jackass, so all I will say is thank you for posting this. I can’t imagine what it must be like, I don’t really ever want to know. I’m just going to hugs my kids and be glad I can.
I think your kids are lucky to have you as a mom, is all.
Take a little bit of my strength today and tomorrow. I can spare it.
Thank you. I’ll give it back when I’m done.
TOTALLY feel ya girl! some days are sooooo rough…but most days, i have completely off the wall, smack me upside the face, amazing convos with my son (10) & thank God for making him JUST the way he is!
I know you understand.
what a brave post to share. Thank you for doing so.
Thank you. Just thank you.
that must have been terrifying! I’m not a mother, much less a mother of three, much less a mother of a child with autism. and I would have been terrified.
just remember that you’re a kickass woman and mother. a warrior woman. and all your kids love you hard.
*hugs*
Thank you, my love. I’m going to print that out and put it on my monitor. Sometimes, you need a reminder.
Aunt Becky, I get it. So much of it, fuck, almost all of it. I always wondered how I ended up following you on Twitter. I always thought it was just because you were fucking amazing and make bad ass Vicodin chip cookies. This post makes it clear though.
I have a two year old son with autism, just diagnosed this year.
Nobody gets it….but other parents of autistic children. Your uncle’s brother’s dog’s nephew isn’t the same as my boy. Or your boy. Or the other 1 in 100 boys. No, “Baby Can Read” won’t make my son speak. Neither will blood transfusions or hyperbaric chambers. It’s hard to talk about with others because I get the desire to punch them in their ever-lovin’ pie hole.
You, me and all of the other parents that give a damn, will fix it though.
You just made me love you more.
Thanks Aunt Becky for sharing this with us, and I’m so glad that there was a happy ending to this story. And here’s a few hugs, ass-slaps and a bottle of Goose just cause I love you so fucking much.
“Nobody gets itâŚ.but other parents of autistic children. Your uncleâs brotherâs dogâs nephew isnât the same as my boy. Or your boy. Or the other 1 in 100 boys. No, âBaby Can Readâ wonât make my son speak. Neither will blood transfusions or hyperbaric chambers. Itâs hard to talk about with others because I get the desire to punch them in their ever-lovinâ pie hole.”
Exactly. Just exactly. That’s why it’s hard to talk about.
Aunt Becky, Thank you for sharing. I have enjoyed your tweets and blog for a few months now. You are funny, couragous & an awesome mother. I commend you.
Sandy
Thank you so very much. You made me smile and maybe tear up a little. I love you for being so sweet to me. Thank you. xo
And correction on the last post, 1 in 70 boys are autistic. 1 in 100 children are autistic.
Damn Lortab brownies (for realz though!).
Send me one of those brownies IMMEDIATELY, if not sooner.
I have no reason to relate to you and Ben. I’m a single man with no kids, but I was torn when you opened up about him running off. You are an amazing person, and Ben is one lucky guy to have you on his side.
WAY TO MAKE ME CRY. Thank you. Just, thank you. You make it my way sometime, come on by and I’ll buy you a drink. Same goes for any of my Pranksters coming through the area.
I’m sorry that you have had this weighing on you, I cannot even imagine. You are amazing, and I love you.
xoxo
It’s hard, sometimes, when I have stories like this inside that I can’t let out, but thank God I was able to let the words out. I feel lighter now.
I love you for being my friend for so long. And for being you. xo
I love you, Aunt Becky.
You will take care of him, as only a momma can. I’m so glad you found him when you did, but I know the what-ifs hurts almost as much.
XOXO-ZW
Ben will find his way because that’s how he rolls. I’ll be there behind him, propping him up when he falls because that’s MY way. And he’ll ignore me when I do, which will hurt, which is the past, repeating itself.
It’s the way it gots.
Much love. I can’t wait to see you again.
I love you. And Ben.
I love you more. Thank you for being my friend and Prankster. It means so much to me.
Thank you for sharing this, Becky. I know it is so hard to write about the evil autism but it just seems to keep coming up, doesn’t it? I hate my posts about my son’s struggles but they are real and honest.
I am so glad your Ben (I have one, too) is safe and back in his loving mom’s presence!
It’s hard to write about these struggles for some reason. I don’t know why. I can write about my other struggles with no issues. But it’s time to be brave and let it out.
Much love to you and your son. xo
Oh Becky, what can I say other than I adore you and its really important that you remember that you are loved, not just by people on the internets, but also by your son.
Hugs and Love
And I love you all back. Thank you.
I can’t pretend to have any experience or insight and running thru the usual platitudes seemed vaguely offensive & left me flat. But I do want to let you know we love you & will offer up big cyber hugs, tissue, hot cocoa, balloons, bacon… whatever your heart fancies. xoxo.
That, my sweet friend and Merry Prankster, is all that I want and more. Thank you.
I’m so glad you found Ben and he’s safely home again! From what I can tell, being a parent is hard, being a parent of a special needs kid is REALLY hard. I am truly humbled by all that you do to stay connected with Ben and provide the support he needs. You are an awesome mom and it’s VERY obvious that you love your kids deeply. Hang in there, your kids love you and so do we!
Dear Aunt Becky,
I applaud your dedication and you “Keep On Keepin’ On”. I know – what else could you do, but still, you do it well. I have taught three different students with varying degrees of autism. They are my most special students. Their parents are even more amazing to me. Bless you!
So glad he was easily found. This was a beautiful post.
I completely know how you feel. My youngest son was diagnosed when he was nearly 3. He’s nearly 6 now. He barely speaks, we almost never know what is going on in his head. Its hard, but I think mothers of children with Autism need to be there for support for one another, instead of passing judgement cause you aren’t doing the same things for treatment. I’m so glad your son was found quickly!
I have no magical words, but you know I’m ALWAYS ready to listen. I wish I could jump through my phone and hug you but they haven’t made an app for that and I smell like camping grossness! Love you bunches xoxo
I have no magical words, but you know I’m ALWAYS ready to listen. I wish I could jump through my phone and hug you but they haven’t made an app for that and I smell like camping grossness! Love you bunches xoxo
Well, my kid gets really sick and I get busy for two days and look what happens, my Aunt Becky dives deep and writes about autism again.
I am so sorry you had to go through that big scare, but glad you found Ben before anything bad happened.
My Jacob, while not generally a runner, has disappeared once or twice when I was out alone with him and his brother. I will never forget the dry-mouth heart-pounding panic that grew more profound every moment he was missing.
Because while Jake is verbal, he is not nearly communicative enough to tell people who he is and who I am and how to find me. And his sense of direction, sense of safety, street smarts? Completely non-existent.
This shit is hard. Jake is just one year younger than your Ben, and we so we were also diagnosed BEFORE the big knowledge explosion about Autism, were still alone in the dark so much in those early years.
Thanks for finding the courage to write about this. And even though my Jake is a different “flavor” of autism than your Ben? We’re in this together my friend. I’ve got your back and you’ve got mine. To the end.
I didnt realize that what just happened with my son was still affecting me until I just read your post & found myself crying.
Last week, my 5 yr old disappeared when were were in Walmart. He has been diagnosed with ADHD & ODD, and the last time we went to his shrink she mentioned him possibly having Aspergers because “he definitely processes things differently.” Well fuck me silly…slap THAT label on him too, I…dont…care…just get him the help he needs already.
So as Im running frantically back & forth in this huge, crowded store almost screaming my sons name, all I could think is thank god that they have the code adam alert for missing kids, because even if he hears me screaming for him, hes not going to answer me, and if god forbid someone did take him, he would just go with them.
No common sense. None. Even though I have explained things to him, had him repeat them back to me & he nods his little head and says he understands. It scares the hell out of me.
After what Im sure now was probably only a minute or 2, but FELT like a goddamned ETERNITY, here comes my son walking with an older woman from about 15 aisles down the other end of the store.
I didnt know whether to grab my son & shake the shit out of him or hug him until I broke something. Thank god for that woman, whoever she was.
I understand the feeling rejected thing too. Hugs, kisses & cuddles have to be HIS idea, because if I try to initiate them, I may as well go jump in a lake because its just not going to happen. And he does the same thing your son does too…out of the blue…and it melts me every time.
Im a single parent who has pretty much NO support system…his father walked away from him, itll be 2 years in February, because HE couldnt handle parenting his son, & somehow it was MY fault. So I do this every day all by myself.
I follow you on twitter & I read your blog, and Band Back Together alot but this is the first time Ive commented. I just wanted to say from the bottom of my heart, thank you for doing all of it. It helps me to feel a little less alone.
It’s like we’re twins. I don’t say that much, honestly, but I totally get all that you feel. Sounds EXACTLY like what goes on in my head.
So, I know I’m a day late and about 192 comments short (or late… depending on how you look at it) but I just felt compelled to comment. If for no other reason than to say I’m here, I’m reading and {{hugs}} to you and Ben.
a friend sent me this post today. it could almost be me writing it, with a different flare of course lol ; ]
i wish to show my gratitude for your site. for you sharing this. For as i read these words I wept knowing I am not alone.
I also know of the painful silent longing for my son’s show of “Mommie Love”, which comes naturally with most children for their mother.
Should he never be able to show me …that mommie-baby love bond, i shall never regret a single moment of sharing my 100% Pure True Unconditional Love with him in this lifetime.
Just like you.
Peace.
late, as usual.
been thinking about you since i saw this on my cell and couldn’t comment. you are meant for ben, he for you. meant.
So sorry i didn’t see this earlier.
I don’t have any kids. I won’t be having any kids. But I grew up as a kid with special needs and know that having parents who can handle the stress and worry of a kid who is different is about the best thing that could ever happen to those of us who weren’t built quite the same way as those around us.
I do not have autism, my issues were as far from that as possible. But that strength you have? That will see Ben through the way my family’s strength and love saw me through.
And at the end of the day, or at the end of some days, you get that heartfelt “I love you, mom”. There are some of us who would give the world to hear that, from any child. I will never be a mom. I will never hear that. But that is my heartbreak. We all have our own, don’t we? I am learning that more and more every day.
You are doing a wonderful job, and sharing your fears and worries and angst can only help all of us feel less alone, whatever our struggles.
Sending you big hugs from England.
*HUGS*
This made me cry. You and your son both are so beautiful… All of your kids are angels…
I’m just a lurker here, and I follow you on twitter (couldn’t help it, another mom who wants vodka, it was like *ping* kindred spirit!). I’m a single mom with a 7 year old son who’s my miracle baby… Horrible pregnancy and delivery and long story short, he was born dead. They revived him, and I’m happy to say he’s a healthy, happy little guy. A few little things like his psoriasis and both our bouts of depression and him seeming to always get pneumonia in the early winter and my anxiety about it all are things I’d miss if he wasn’t revived… Without him, I wouldn’t be me.
I’m sorry, I’m rambling on…
Just thank you, for sharing even the toughest moments. Gives me courage and inspiration to face my own.
This made me cry. You and your son both are so beautiful… All of your kids are angels…
I’m just a lurker here, and I follow you on twitter (couldn’t help it, another mom who wants vodka, it was like *ping* kindred spirit!). I’m a single mom with a 7 year old son who’s my miracle baby… Horrible pregnancy and delivery and long story short, he was born dead. They revived him, and I’m happy to say he’s a healthy, happy little guy. A few little things like his psoriasis and both our bouts of depression and him seeming to always get pneumonia in the early winter and my anxiety about it all are things I’d miss if he wasn’t revived… Without him, I wouldn’t be me.
I’m sorry, I’m rambling on…
Just thank you, for sharing even the toughest moments. Gives me courage and inspiration to face my own.
I have followed you from the peanut gallery for a long time, but I wanted to say that this was a beautiful post. There’s nothing wrong with my life that a martini won’t fix and I marvel at what you have accomplished. I have friends with autistic children and they struggle every day, but you have put in written form what they have tried to verbalize for me. I kind of get it now, although I will never live it. Thanks.
This is beautiful. It made my heart ache and swell at the same time. I’m so glad you are telling your (and Ben’s) story.
you know I get it.
So no more words, just understanding.
I love you both.
Wow, sorry I’m so late to the party on this post. I NEVER knew heartache until I became a mother. And my kid? He’s only two. And he’s not autistic, or sick, or anything. I’m just a mom, and by definition, I worry.
and worry.
and worry some more.
I’ve always enjoyed your stories about Ben, and the image of him walking you down the aisle still brings a smile to my face. I can’t imagine the panic you must have felt when you realized he was missing. You are a good mommy Becky; don’t ever doubt that fact.
All my best to the Aunt Becky household in 2011,
I don’t think you have to have a sick kid to know that fear. Parenthood changes you. That’s the beginning and the end of it. There’s no “but” I want to throw in there, you know?
So much love to you. Happy New Year, love.
My son, The Boy (in my blogland) is 15, and has the lovely letters ASD and the ever-wonderful Bipolar Disorder diagnoses tacked onto his lovely self.
He is what he is (much like Popeye), and I wouldn’t change him into “normal” (whatever that is) for all the Coke Zero in China.
I am his number one fan, and am his biggest advocate. We’ve met some terrific folks to work with him (and me) over the years as we travel down this dark path together.
Despite all the challenges, I still like this kid…a lot.
Stay strong, fight for your son the best you can, and love him for what he can do, instead of letting others put your focus on what he can’t.
Good luck.