A while ago my friend and fellow mom to a “different” child, Susan Wagner, wrote a piece called What It’s Like which I have often, secretly (until now) gone back to read when I need a little boost of solidarity. Susan says:
The hardest thing for me about parenting Henry has been the sense that every time I get my feet under me, the ground moves again and I am left struggling to get my balance. I think Henry is doing well, I can see that he’s doing well, but now I am worried all over again, and I am worried that maybe I’m not really helping as much or as well as I could be.
One of the things that I am trying to let go of is that constant worry; I’m trying to look at my children, both of them, and see not what might go wrong but what is going right. But I worry that with Henry, if I’m not ready for the disaster, I will be completely overwhelmed when it comes and will not be able to help him. And so I wait for the next bad thing, which is never — ever — the bad thing I was waiting for but always something I am completely unprepared to deal with on the fly.
I am deep in the midst of “completely unprepared to deal with on the fly” and I am so afraid I’m doing it wrong.
Monkey has been doing really well. REALLY WELL. He has hit his stride at school and is doing well with his friends and being sweet and charming and everything I associate with the very heart of my sweet, tender son.
At least, he was.
See, I knew that the orthodontia was going to be hard for him. I knew that as a “sensory kid” he would experience more pain than a kid who is not wired a little wonky when it comes to sensory input. I knew there would be an adjustment period.
And then he wouldn’t eat. And he wouldn’t drink. And while I spent the week trying to get him to consume something—anything—I missed it. I just completely missed it.
He started eating again (a little) and I rejoiced and asked if he was feeling better and he said yes and so I STILL missed it, because I wanted to believe we were on the road to recovery and the hard part was over.
The occupational therapist once described kids like Monkey to me as as pitcher that can hold a finite amount of liquid (or sensory input). Each addition to the pitcher raises the liquid level, and normal people both don’t experience that input as being such large amounts and are better at “pouring off” when necessary. Kids with sensory integration problems experience every input as a huge cup poured into the pitcher, and find themselves overflowing in very short order.
Well, you know, we’d worked out a great system, here. Monkey does his occupational therapy, he takes his anti-anxiety meds when he needs them, and for the most part he’s on a pretty even keel.
Then he got his devices put in, and now there’s all this pressure in his mouth.
Then at soccer practice this week, someone’s dog managed to circle him and wrap the leash around his legs and it cut him a couple of places.
Then he started eating again, but still not really enough, and so he’s constantly complaining of hunger but unwilling to try to eat more.
This kid’s pitcher has been overflowing all week and I missed it.
We had our first soccer game this morning. Monkey was SO excited to be back out on the field—it’s all he’s talked about for days. He ran around like a puppy, huge grin on his face.
And then he and another kid went for the ball at the same time and he got knocked over.
He went—in a word—apeshit. “SHE PUNCHED ME!” he screamed. “SHE’S TRYING TO KILL ME!” The coach is great and tried talking him down but when he was given the option of shaking hands or having a sub come in for him and Monkey was still screaming bloody murder, I knew there was no way it was going to end well. I stood there while my son mouthed off to the coach and was embarrassed but knew I had to let him handle it, but then when he finally agreed to shake hands and the other player came over and Monkey just about yanked her arm off, I was mortified. The coach put him on the bench and put in a sub.
The girl whose arm he’d yanked stood on the field crying while her coach explained that she had done nothing wrong, it was that other unsportsmanlike player who was in the wrong here, and I willed the tears trying to drip past my sunglasses to stop, stop, wait until later.
Monkey was over on the sidelines crying and carrying on, insisting that the coach put him back in. I tried very hard to think loudly enough for the coach to hear me DO NOT PUT HIM BACK IN, but the coach—who is new this year and does not know my son—went ahead and put him back in a few minutes later.
This time it was less than a minute before he took a tumble, and as he lay on the ground seething an opposing player happened to wander too close and Monkey kicked at her, viciously, like a wounded animal.
The other coach called for Monkey to be ejected, and while the eyes of all the other parents burned into my back I hauled my flailing, screaming, inconsolable son off the field and up the small hill above to plunk him down and wait for him to stop shrieking.
I tried to talk to him several times, too early, while he continued to cry and protest, and after a while I gave up and let him cry himself out. When he was quiet I asked him if he understood what had just happened. I asked him if he knew what a red card was. He continued arguing and yelling.
Finally I asked him if he knew that he’d made that little girl cry, and the angry monster in him broke and he sobbed, the fury drained out of him, as he realized what he’d done but that he had no idea why he’d done it.
We watched the rest of the game, and then we came down the hill and he apologized first to the opposing coach, then to the girl whose arm he’d hurt (shaking hands nicely this time), and then having a talk with his coach.
Some of the parents from the opposing team averted their gaze as we came by, and others plainly stared and asked if he was alright.
“He’s having a rough week,” I said, my arm holding him close, anchoring him to me as if he might drift away in the wind if I let go.
We drove home in silence. When we pulled into the driveway, Otto sent the kids inside and we sat in the car while I finished crying.
Monkey had some lunch and some quiet time; Chickadee and I went out and ran some errands. Later the kids played awhile. I gave Monkey some more Motrin and he told me he was feeling better.
We had plans to visit with friends for dinner tonight. About half an hour before we were to leave, Chickadee was on the phone with her dad and told him that Monkey got taken out of the soccer game, and he overheard and ran into the room in a rage and hit her. Clobbered her but good, too.
He was sent back to his room, where he railed and cried and told me over and over that it was her fault.
I sent Otto and Chickadee over to see our friends.
After a while I went to talk to Monkey. He was back to being contrite, and when he heard that dinner was continuing without us he was heartbroken.
“B-b-b-b-ut I need one more chance,” he sobbed. “A-a-a-a-and YOU didn’t even do anything wrong and you didn’t get to go because of meeeeeeeee!”
“Sweetheart, you don’t get ‘one more chance’ when you hurt other people,” I told him. “And I am really, really worried about you. Because you are the sweetest, kindest person I know. My Monkey doesn’t hurt people. Something is going on with you and I want to help fix it. This isn’t like you.”
He continued to snuffle and cling to me. “I don’t know,” he wailed.
“Is your mouth still hurting?” I prompted. “Is something ELSE hurting? I gave you some Motrin, you know.”
He nodded against my shoulder. “My head,” he cried. He sat up and wiped his eyes and looked right at me for the first time all day. “My head, Mama. It hurts. It hurts so much, it’s so LOUD all the time. The Motrin doesn’t help fix loud. When it’s so loud I get MAD.”
At that point it feels like there’s nothing left to say, because the volume in his head is turned up to 11 thanks to the sensory overload in his mouth, and when I look at it that way, no wonder he’s so angry. On the other hand, he can’t go around having tantrums and hitting people, and he knows it; and yet here we are.
So I didn’t say anything, I just held him and wrapped us up in a blanket and rocked him and stroked his hair and hoped that maybe for a minute or two, things were quieter for my baby.
Thank you for posting this. There are a few moms out here who understand. Just this week, one of my parent groups had a long discussion about bystanders- one dad hands out “business” cards about autism to the looky-loos, and another had a t -shirt made that says, “I have autism. What’s your problem?” Your Monkey has the perfect mommy.
Laurie
Prayers being said for you and Monkey right now.
Happy Easter.
Oh Mir. I have such big tears for you right now. I know that there is nothing I can say, but know that I am praying for you, as a mom, and praying for sweet Monkey as he rests the loud.
I agree with the post above, Your Monkey has the perfect mommy!!! I cried when I read this. Hugs to both of you and hope this passes soon. You are an AWESOME mom, don’t ever forget that!
Mir, I have one that struggles with sensory issues too, and I can relate to so much of this post. I’m so sorry that you are going through all of this.
You are an amazing mom to two amazing children. Hang in there.
Bourbon helps, too.
I really can’t imagine how hard it must be for you and your little guy. Thanks for sharing. Some of us parents (and by some I mean ME) whose kids don’t have these issues need a reminder that sometimes (perhaps more often than I would guess) there is a lot more to the story of a misbehaving child. I’m trying to practice holding back the judgment that springs to mind so easily.
I am so sorry. I have a sensory kid and it’s so hard to parent when it doesn’t make sense. We had to do some private OT for a while to get back into a better rhythm and a ‘sensory diet’ of sorts. Things are always worse for us around the time of growth/development spurts. I love that you could reassure him that he is a good kid. I’m sure not being able to eat properly also is more challenging for him.
Oh Mir. Oh, hon, I know this so well. I’m sitting here with tears in my eyes, knowing EXACTLY how this is. My oldest has SPD and it.sucks. The looks from other parents, the not knowing what’s going to set off the next fit, the not being able to relax. I know. And it’s so, so hard. Thank you for sharing this; I know it wasn’t easy, but it makes me (and others, I’m sure) feel so much less alone. It’s so hard when we know that our child really is a sweet, loving child, but is being held hostage by his sensory input. Sigh…thanks. And I so hope Monkey gets to feeling better soon. Poor sweet guy.
Wow…just wow. Not enough people talk about how hard it is for those of us who have one of those kids, one of the ones that other people stare at, who act outside their true selves when in crisis, and to whom crisis is a different creature than for other kids.
Thanks, Mir. Just saying it out loud helps others of us doing this.
You are an awesome person, a better mom, and an amazing woman of faith. I don’t think you could schedule one more thing to deal with in your life this week — and yet you handle it with grace and dignity. (Yes, I’m positive you had both.)
I want to hug you and tell you it is ok. I can’t imagine how hard this is on Monkey right now. I can imagine how hard it is for you.
When you are at the worst, sing this song (to the tune of Jesus Loves Me), “I am a good mother, by blog tells me so.” ;)
Been there, done that, got the kids who behaved that way, got the stares and the critical remarks from other parents.
It is a hard road to walk, both for the kid AND for the parent. Many many {{{{ HUGS }}}} to the both of you.
You are a great parent for understanding him and being there for him.
Karen
I admire you. And I admire the way you handled things today.
Godspeed, Mir.
My heart breaks for Monkey, and I hope his weekend improves. This post helped me to better understand SID, so thank you!
Thank you so much for sharing this. I can only imagine how difficult your week has been and then to be able to come here and write about it and write about it well. It’s a good reminder for me that there is often more to the story than a misbehaving child and that I should have more patience and not be so judgy.
To echo other posters, thank you for sharing. I, too, have learned a ton from reading your blog.
Many, many prayers being lifted for you and your family. I pray for peace in the deepest part of your heart.
Pretty Mir, thank you. I’ve forwarded the link to the post to my younger sister, who is the mother of a 6 year old boy whose pitcher overflows quite a bit. I hope it will help her feel less like an island. You are the best.
Oh Mir, my heart goes out to both of you. I hope it’s something that jellybeans can fix tomorrow.
My Amelia is 4, and she was diagnosed with “mild” SPD at age 2. We have good and bad days. Some days, I can forget about it, but I could write a similar post about her in SportsTykes class.
As mothers, we need so much more patience…
I think one of my take-aways tonight, after reading your post, Mir, is My God, who knew there were so many parents of kids with SID (I being one of them) here in the “audience”? And how many more who did not post?
Like I said, I too am parent to a kid with SID (or SPD – the P is for processing). Bunker Monkey, however, is a sensory seeker, so he can’t get enough sensory input. As a result, though, a lot of the behavioral problems look similar – except that instead of having meltdowns because he is getting sensory overloaded, he has meltdowns because he needs more, more, more input that he’s not getting. But to the outside world it looks the same – meltdown city – so we get a lot of the same looks. Thank you for being brave enough to share a piece of your journey with us. And thank you, too, for reminding us, in your own kind way, to try to let go of the constant worry, even for a little while, and just be in the moment with our kids. That, sometimes, is the greatest gift we can give, out of love, to ourselves and to them.
Lots of prayers for Mir and Monkey tonight.
This was very eye opening for me. So often we (not you, but me) expect our kids to act exactly as we would in certain situations. But we’re all wired differently. I’m sorry you had to go through this.
My son turns into Godzilla if he hasn’t had nutritious food and protein in a while, so I imagine that on top of all the sensory stuff, Monkey is just plain hungry.
Hang in, sister!
crying for both of you. i hope that it gets better for the little guy. big hugs to you both.
This brings tears to my eyes, because right now? We are in a good place with my Peanut. We just got a complicated-but-official diagnosis, and we are moving forward, and he is (mostly) the sweetest, most charismatic kid you could meet. But I remember all “these kind” of days we’ve had, and I know “these kind” of days are waiting for me. You really are doing everything right – or at least, doing everything the way I hope to when my boy is that age.
I have such big tears in my eyes, and I’m really feeling for Monkey right now. I remember days like that for myself as a child and my heart goes out to him. He’s so lucky to have such a c aring and a desire-to-understand mom. Hugs to you and your family as he adjusts.
I’m so sorry. I’ve wondered how he’s been handling this.
my heart goes out to you both.
Made me cry. Good luck, Monkey.
So sorry that both of you have to go through this.
The fact that he was able to verbalize the LOUD in his head is a huge step. It took lots of years for my “special one” to get to that point and even longer to realize the consequences of his actions, the negative peer pressure eventually helps I think. Of course then he just saved it all for home.
I know I have told you the story of “special one” and the baseball coach. If you need to hear it again let me know ;-)
My heart breaks for Monkey because I know what that loud volume is like all too well. He is so lucky to have a mother like you – so full of compassion and as much patience as you can possibly muster.
I hope you guys have a happy Easter.
*Hugs* to you, and to Monkey.
As a mother of a child with autism who has sensory issues, I can so relate to what you wrote. My heart breaks for Monkey as it does for my son. I hit a wall this week too and I know how much it hurts. I’m thinking of you.
Tears for a Monkey I don’t even know….
All this sounds so familiar … my second son has SPD as well. Yah, braces suck. I feel for da Monkey … AND his mama. Hopefully the adjustment won’t take too long. *HUGS*
You’re doing fine, you’re an awesome mom. If my mother was one fourth of the mother you are, hell I dunno I’d be a rocket scientist today or something completely and utterly awesome.
How awful for Monkey. But from what I can tell you handle every situation as near to perfect as I could imagine.. don’t give up.
You made me cry on Easter. You are an awesome Mom and your kids are so lucky to have you. My heart breaks for Monkey and I truly hope the loud quiets down for him soon!
And he’s such a sweet Monkey that even through HIS problems, he feels horrible that you missed out on the dinner. Maybe he’ll one day get to the point where he “feels it coming on” and voluntarily withdraws himself? I’m crying too, now.
Wow Mir, this story hit me right at the right time. My son also sensory and ADHD just switched meds. It’s rough over here and will be for about 2 weeks. I’m glad to see I’m not the only one who spills tears for kids like ours. Thank you for lettting us in to this part of your life. It’s nice to know I’m not the only one struggling this week. Have a nice Easter
sniff. sniff. One of these days I’m going to write a post about how great you are and how great monkey is and my own experiences with a kid like monkey who never got a diagnosis and so we struggled in the dark, never quite knowing what in the hell we were doing. Some days, though she’s very much a grown up now, we still don’t know what we’re doing. But we do know it’s often very loud. And there is nothing that helps the loud. sniff.
You are a wonderful mom. Hugs.
Oh Mir and Monkey, I’m so sorry that your week has been so horrible. I’m not going to say I understand, because I don’t have a child with SID or SPD of my own, but I sure can empathize. Tears and prayers for better days.
Such a heartfelt post. Thanks.
I am particularly glad Monkey was able to apologize at the soccer game. That surely made him feel better and a little more in control. I have a seven year old and although there’s no sensory issues there are days when being seven plus getting angry or failing at something is just too much…
I’m sending good wishes to all of you.
May Monkey be blessed with a quieted head. Blessings on all you.
Easter Sunday – and I’ve finally gotten to finish reading this post. Like so many others have already said: many, many blessings to you and your family. Your story of trials, transgression, hope, love and understanding broke my heart. . . . in such a wonderful way.
It’s so hard to wait on redemption – and yet so glorious! Thank you for that glimpse of glory in your home and hearts. He is risen, indeed! I pray that your Easter will be a wonderful – quiet – day of rejoicing and peace, for all of you. But also especially for Monkey, today. May delight surround you.
I am crying.
I don’t know what’s going to go down at my house when the kids find out about my Extreme Life Makeover, but i’m sure that it will involve me crying in the car at some point. I am so glad that there are other mommies out there who aren’t perfect, because I’m sure not.
You are truly an amazing mom. I also have an SPD/anxious kid and I can say, I do not have the reserve of patience that you have. You handled that all just right.
I love the pitcher analogy. It says it so well. And I am so sorry that Monkey’s pitcher is so full. I hope the pain eases up or he finds some way to pour it off a little.
Big hugs!
Oh Mir, what a crazy week this has been. I’d have had to sit in the car and cry it out, too! It’s great how you handled Monkey last night, snuggling and loving him and telling him that it will be alright. I hope this sensory overload spills out of the pitcher at a more rapid rate now that he has a week of it under his belt. I want to come and give you all huge hugs!
HI Mir
I’m a long time reader but i’ve never commented before. what monkey said at the end about his head triggered my comment.
i get migraines. what he said made me think maybe the detnal work is giving him headaches now too and he isn’t sure how to process those. just a total guess but i know how i feel with my migraines and i can’t imagine it with SID. if it’s his head there may be smething better to take but i’m not sure.
hang in there! have some bacon. :)
Thank you for writing this. I’m not a mom, but I think it’s really important to get sensitive, honest information out there about kids who really are special cases because so many people don’t understand what it’s like. I didn’t get it so well before, either, and I’m a future doctor! Thank you for giving me a glimpse inside your head and your son’s head – hopefully this will help lots of people to understand better and be more empathetic when kids have a full-blown meltdown. I know the knee-jerk reaction is to judge, but that never helps. We need to understand instead.
W had a bad week a couple weeks ago, triggered by a long, trying evaluation at the local preschool. We had to do it to get the local school district to provide her therapies…but man, the aftermath made me want to pull out my hair and go running through the streets, screaming at the top of my lungs. It took a full week for her to come down from her sensory overload. During that week, she was picking fights with her 1 year old brother, screaming for no reason and constantly out of control. Even her extremely patient OT looked at me after 10 minutes of being around her and asked, “What did they DO to her????” I spent many an afternoon, holding her tightly and trying to cry along with her. There wasn’t enough alcohol in the world to help me that week and by the end of the week, I was ready to run away….
I sure hope you and Monkey pull through without many more incidences….
Anne
Lots of (((HUGS))) sent your way. Thank you for sharing such honest emotions in this post.
Lots of hugs (light gentle ones?) and prayers sent your way, guys. That just sounds so incredibly rough. You’re a great mama, Mir, and I know you and yours will pull through.
“Otto sent the kids inside and we sat in the car while I finished crying.” Wah! That got ME crying. Sending soothing gentleness to the Otto/Mir household.
It must be so very heartbreaking to see what he’s going through, especially during the harder times, and feel so very powerless. But it is posts like these that help make others aware and promote understanding. I know that this type of knowledge will help me be a more empathetic person. Thank you.
Jane, Pinks & Blues
Dear Mir-I’m a chiropractor in CA. and have treated some children with sensory issues. You might want to find a chiropractor that does CRANIOPATHY-i.e. gentle adjustments of the joints between the cranial and facial bones.This frequently helps with many issues like tinnitus and headaches related to changes in intercranial pressure. One of your previous posts mentioned that the orthodontic appliances separate the bones of the soft palate,so that pressure is being transmitted to many of the other facial and cranial bones as well, especially the tempromandibular joint (TMJ). Many of the nerves of the TMJ can cause noxious feedback causing headaches and ringing in the ears. GOOD LUCK and I hope that you have a meaningful Easter.
Mir you are doing a great job at mothering. You can’t foretell everything, you have to deal with it as it comes along, hope that you have a handle on it, and deal with the next issue. Monkey will grow at the same pace. The other parents are concerned and ignorant all at the same time. Let your patience continue and have another Xanax, you’ve a beautiful son (and daughter) they’re just growing.
I have no wife or kids myself, and so I mostly just lurk and enjoy the insightful and often irreverent humor that abides here at Woulda Coulda Shoulda. Today though, I read Mir’s post and all the replies and just marvelled at the multitude of mutual support, sympathy and understandng that typifies this readership. Bless you, Mir, Monkey, and all the others who congregate here. I can’t think of a better place to be on Easter Sunday. Rejoice.
That was heartbreaking, I do hope things get better for him, childhood is not supposed to be this hard. Bless his sweet little heart, I hope he feels good to gobble up those chocolate bunnies. Oh my heart aches for him.
if there’s any place where the quiet will take over the loud, it’s in the rocking arms of a mom who cares as much as you do. hearts, hugs, and good thoughts to you and your family.
I sat here crying, while reading this… heartbroken for Monkey – for all of the confusion and loudness in his little head. I don’t think our boys have any sensory issues, so this is very new to me. I only know what I read, but my heart gots out to you.
Big tears here. I’m so sorry for Monkey and so grateful he has you as his mother. God knew what he was doing. You are so good with him because you care so much. I realized the other day with my own kids that I’m a good mom BECAUSE I worry that I’m not my best with them all the time and that even my best sometimes just isn’t enough. That’s when I have to hand it over to God. And strangely, that gives me peace. I hope it gives you peace to. I will be praying for you and your dear Monkey (and Otto and Chickadee too). Happy Easter. Thank you for blessing us with your honesty.
Oh, friend, I wish I had more words than, “Sending strength.”
Oh, Mir, I know. I KNOW. Maybe it’s the time of year; we’re having very similar issues with N, but I can’t blame appliances in his mouth. I recently wrote about this, too…about how it’s like quicksand, and every time you dare to move, even if it’s to move forward, you get sucked in deeper into these problems. It is so freaking HARD.
I know.
Hi Mir,
I’m new to posting but I’ve been reading your blog for a few months now.
I just wanted to thank you for posting about the issues that Monkey has. It helps us parents who don’t have to go through that, be more understanding for those who do. All too often parents assume the kid just has a bad attitude. They may not know the real reason for a kid to act out. Also, I have a friend who’s son has ADHD, is Bi-polar, and has a touch of Asperger,s syndrome; So I’m more aware these days that the problem may not be what we think it is- that it often goes deeper than that.
Anyway, keep being the great mom that you are. Both your kids are lucky to have you and Otto as parents.
I have no value to add, but I did want to let you know I’m sending prayers to you, Monkey and the family as well. This too shall pass.
I just want to say… something. I’m sorry you’re both (all) going through this. I understand, somewhat, having a difficult monkey of my own. I hope things get better.
I am inspired by the outpouring of support here! For me, this post serves as a reminder not to look, not to judge, we are all just one step away from being the mom on the sidelines.
I just love ya, girl. That’s all I know to say.
Poor Monkey! Poor Mir!
I’ve been wondering if a meltdown was coming for the poor kid. This year, one of the kids in my kindergarten class, who has SID, he broke a bone in his foot. The doctor wanted to cast him and I had several strategy sessions with his parents. This kid is a lot like Monkey…he does very well until he just. doesn’t. Thankfully he healed without a cast.
I’m praying for you and your family. I really like Monkey’s way of articulating how LOUD all this is in his head. What a smart, lovely boy.
Hugs, Mir. I know how it is to wonder why your love can’t fix ’em. Although your love has created a sweet, caring little boy. How he was thinking of you missing dinner when he was so mixed up inside-I think that made me cry more than anything. I hope you guys have a better day tomorrow.
Thank you for posting this. You have helped so many people by sharing. You will never know. I DON’T have a child like Monkey, or Henry (but my 6 year old is named Henry – which adds nothing to the whole story I just realized..lol). He plays soccer. We have a couple kids on his team that have some of the same types of things going on like Monkey and Henry. I have never thought anything else other than – the obvious, there are some extra emotions going on here…etc. and I can’t believe parents would think otherwise and not be sympathetic. they are ALL learning how to get along with others at this stage. I offer no words really to help, but this community is praying for you and Monkey and that “this too, shall pass”. Parenting…aaahhhhhhhugggghhh… it’ll kill ya sometimes. Ya JUST GOTTA KEEP LOVIN’ EM… Ya know..? that is all you can do.
Its amazing how you often you feel like your child is the only one, and then you read something like this and it reminds you that you and your child are not alone.
My youngest is 9 years old. He’s bi-polar, has ADHD, and has sensory issues. What we convince ourselves to look at as “challenges” other parents look at as “nightmares”. We’ve had meltdowns on the football and baseball fields, and had to pull him from those games or practices when it became necessary. Its never easy.
At the start of each new season, we have a meeting with Bug’s coaches, and then we take the opportunity to speak up at the parents’ meeting, too. We explain to everyone what the issues are, and some of the best ways we’ve found to work with them. We’re fortunate in that my husband is often actually on the coaching staff, so he even has the opportunity to talk to the other kids on the team.
The end result has been that when we DO have moments where Bug is reaching meltdown point, EVERYONE can recognize it, and all of our parents and coaches show a united front to the opposing teams. So that even when the other team doesn’t know the details, they at least know its not just that we have a “bad sport” out there.
Hang in there, Mir.
Thank you. I have a child with Autism and sensory issues that go along with it. Susan’s quote explains so well what happened here today, as well as how I feel most of the time. We had an overflowing pitcher today. I am slowly learning to cut myself some slack, but I do have an idea of how it feels.
You are the best Mama for Monkey – don’t beat yourself up, Mir. You say that you missed it… I say that all the things you were doing prevented it happening sooner. It would have been much worse for Monkey had it happened when he had his eating issues as well. Take care of yourself as well as your precious boy.
We’re going through the same sort of thing. Only my son’s issue isn’t his mouth, it’s his eyes — he’s got to patch one eye and wear a contact lens in the other — and the pitcher analogy was spot on. I’m walking on eggshells waiting for the big overflow.
It sounds like you’ve got an amazing son who, during his hard time, was wonderful enough to think of YOU not being able to go to dinner. How sweet. I hate that he’s going through such a hard time.
Big fat tears here, too, for Monkey and Mir. Hoping that Monkey feels better soon and all the ‘noise’ goes away..
sending ((hugs)) and strength your way…
Hugs to you, dear, and to Monkey, too. The “loud” is one of the hardest things to deal with because it’s not something Mom can fix. And I know, believe me I can feel how much you want to fix it.
I had my children young so they are grown now. But I am sending this post to all my friends with kids so they realize the wee one that’s acting up may not be just being bratty, there may be an underlying cause that warrants patience and tolerance. Monkey, and God, chose you for a reason Mir, please never forget that. You’re the WOMAN for the job. And maybe look into the chiropractor’s advise. You will be in my prayers.
This is EXACTLY why we should never judge a child or his parents based on isolated incidents. Poor Monkey. I am praying for you guys.
That broke my heart and made me tear up. I’m not a mother but you are an insipration to me. I hope I can be half as great a mom as you are. Hang in there!
Not sure you need another thank you right now, but I’m gonna say it any way. Just last week I mentioned the “noise” in my son’s head to my mom and she replied “Oh no, is he hearing voices too?” We’re starting meds on Monday and though I’m petrified, if it makes it 1% easier for him, then it will be worth it. Thank you too for the Friday Playdate link (and the subsequent NYT link). Bookmarked them for me and printed them for friends. This morning I yelled in the car because his “pitcher was overflowing.” Sometimes I don’t know if it’s harder for him or for me.
Wow…now I get it. It’s hard when kids don’t have the words or experience to explain what’s going on, but Monkey did an awesome job. I can only imagine how frustrating it was for him. Don’t be hard on yourself, Mir. We can only do the best we can. We all know what a great advocate you are for Monkey and Chickie.
Once again, your words and your sharing are helping people on all sides of the parenting fence better understand their kids, or their neighbors’ kids. I know everyone who reads this will think twice about rushing to judgment and many who read this will have the light bulb turned on as to what’s happening with their own child, like I did back when you shared Monkey’s diagnosis with your readers.
Thank you again for writing (both the good and the bad). May you get back tenfold the compassion you create in others when you put your story out there for all of us. Monkey’s in the best hands possible, I think. I hope the noise quiets soon for him.
Mir, that made me bawl. My son is so like yours and he’s acted out in very similar ways when he is overloaded. It is painful and heartbreaking to witness.
One aspect of your parenting that I really admire is your ability to discipline so calmly and compassionately. Especially in an emotional situation. I’m not so sure I would have reacted with such presence and that makes me tear up,too.
Mir, you really are the best mom ever. I know it’s tough, but god, Monkey and Chickadee are the luckiest kids on earth.
Oh Mir…
(hugs) to you and to Monkey. You won’t recognize my name, because I have changed it from what I used to post under, but I wrote you last year when my own sensory kiddo was having issues. She’s doing great right now with her OT/School/Etc…but she’s getting a tooth pulled on Wednesday and I have a feeling we’re going to get a doozy our way.
I’ve got tears dripping past my sunglasses, too. My heart feels for you and Monkey. Hang in there…
Mir, I wish you the best and I hope you can find a solution that works well for Monkey. Those spreader things look like no fun at all. One of my nephews had to wear one, and he had no sensory issues, but he still hated it with a passion.
Poor Monkey. All that stuff in his mouth would be a lot for anyone to deal with. Add the sensory issues on top and it must be so difficult for him. And so difficult for you to watch. We all hate to see our babies suffer. You’re an excellent mother and sometimes all you can do in the moment is hold them.
*Hugs*
My heart goes out to both of you. Monkey is one very lucky child to have a mother like you. Talk about a lot of tears here when reading this one…I hope that a solution can be found to help Monkey deal with all this…
You don’t know how badly I needed this post. My four-year old is SPD. We recently found out she is also allergic to wheat and dairy, which exacerbates her SPD. She recently went into “overload” at church. We got responses from people that ranged from “wow, she’s fiesty” to “she knows better, you really ought to spank her for that.” Yeah, I’ll keep that in mind.
Needless to say, the past few weeks of weaning her off of wheat and dairy and trying to hold myself together have been really fun.
I am an OT who works with special kids. My daughter sends me your blog site and she doesn’t have children yet. Your insights are very powerful. I wish all parents could take the time to put themselves in their child’s shoes to help understand what goes on in there. I know that you feel that you missed it this time but I think you are teaching him so much by talking him through the best and the worst days of his life. He will survive and it will be because you and your husband care so much.
Poor little guy! And I so agree with all the people above, you are my hero. I want to parent just like you!
I totally get what he means about the loud and I can imagine that being a kid surrounded by people who don’t get it must be so hard.
Great great big hugs for the both of you.
You handled that very well. My heart goes out to your poor boy, I know its difficult having a different child and I applaude you on being a fantastic mother. Best wishes to you both.
[…]Thing is, life isn’t always routine. Sometimes it deviates from schedule and well, LMNOB regresses a bit. And other times, there is no rhyme or reason and LMNOB regresses. It’s exhausting trying to anticipate and prevent meltdowns, because there isn’t always a pattern, and sometimes the trigger is out of my control. And that’s just when I catch it.
Other times, I miss the signs. Completely. I’d tell you what that’s like, but Mir just did a beautiful job the other day.[…]
Mir, I’m wayyy behind on reading posts, but I’m glad I didn’t skip over any of yours. This one hit me right square between the eyes. I have a 3.5 yr. old son who has SPD too, and the way you described it is just spot-on. We’ve been having a really rough few days with him. I’m making my husband and the grandparents read this. Thanks and I hope things are getting better for Monkey now.
ps… I’ve read that digestive enzyme supplements can help, we’re actually trying that right now. A mom of a kid with severe SPD wrote a book about her experience called “Enzymes for Autism and Neurological Conditions”, here’s her website if you’re willing to try it http://enzymestuff.com/conditionsensory.htm . It might be worth a shot.
You’re the best mom ever, Mir. Mir the wonderful. Mir the Pretty.
I don’t have a child of my own, but I remember being like Monkey. I am still like monkey, at 22. It doesn’t get better, but it gets easier. Fantastic parents help so much, and you definitely are one.
My son has Tourette Syndrome and a neurological inability to filter noise. A psychiatrist described it as his neurological system running a permanent fever–way above where we’re meant to be. I empathize with you and your son.
So sorry, Mir. I am praying for you and sweet Mr. Monkey.
Oh Mir, I’m sitting here with tears rolling down my face for both you and Monkey because I so totally know what you’re going through.
((HUGS))
It is so so encouraging to all of us other parents out here with kids like Monkey to hear these sorts of stories. My heart goes out to your entire family. My son is 4 1/2 and has SPD. As a matter of fact, he just started soccer and the first session, I laughed because he’s such a goof for the first half and then had to fight back the tears the whole second half as I saw how different he was from all the other kids. It can be such an isolating experience. So, in those times, when we’re just trying to keep it together, let’s never forget that we are not alone. Many hugs to you!
How about making a shirt for Monkey to wear to/from soccer games that says something like “My sensory input goes up to 11” Or something suitably Spinal Tap-ish and worded more funnily?
Hang in there, Mir and family — we’re all out here rooting for you!
Ditto all of the hug and love-sending sentiments. xo
Oh sweetie I am so sorry for you and Monkey. It really is hard. Although I am “self diagnosed” I know what he is going through. I didn’t understand until I was an adult why I would get angry at people who were making noise. It still drives me nuts if I don’t limit it.
The great news is that you are aware of his needs and helping him get through this.
What I love about this post is that Monkey was able to articulate what was wrong and you instantly understood him.
When it truly mattered, you didn’t miss it.
You are awesome, and I thought of you as I drove through Atlanta yesterday.
Shash
crying for you all.
My boy is almost nine and has something autism spectrumish. We’ve been trying to figure it out for six years and none of the labels seems to fit perfectly. So we’re just trying to figure out what his needs are and to meet them. The pitcher analogy makes so much sense to me. Next time I am getting frustrated at his inability to handle a situation I think he should, I will remember and try to help him “pour off.” Thank you.
Belated hugs all around.
I haven’t read your blog before, so I have no idea what I might suggest (as an autie with massive sensory sensitivity) that could help him… All I could keep thinking was “does he have a room he goes to alone, that isn’t intruded on by the racket of everyone else, where he can wind down?” If he doesn’t, well, that might be part of the answer… It’s not so much that we’re not as good at reducing that sensory pitcher — it’s that most of us don’t get to have access to an environment (like a quiet, cool, gently-lit room to retreat to) that doesn’t add to it.
Think of it like having a hangover/migraine while sleep-deprived, and having a birthday party later on you’ll really enjoy. It’s not that you aren’t good at reducing your “pitcher”, but rather that your surroundings are too bright/noisy/quick-moving/etc. for you to just sit back anywhere random and relax. You have to go somewhere that isn’t overloading — for most people (as far as I’ve heard) this means going to a quiet, cool, gently-lit room. A while in there, even though everything is still intense, your pitcher is low enough that it’s not problematic & you can enjoy your party.
I haven’t had that kind of environment the last few years, because I forgot what it entails — I only realized day-before-yesterday that my room is exposed to a LOT more noise & light than my the workroom I used to spend time in. It’s also been the last few years that I’ve been extra prone to meltdowns. (Tantrums are things people/kids do in order to manipulate others into giving them what they want… Meltdowns are an involuntary fight-or-flight state where we’re near-mindlessly trying to escape the things that are overloading us.)
In case you haven’t read it before, Frank Klein has the best description of sensory overload & how to manage it that I’ve ever seen… His site is down, but I found it on the Web Archive: Sensory Overload Explained (What It’s Like For Me).