6:15 AM – My boy wakes up. Deep inhale. What will the day be like today for him; for us?
8:00 AM – Exhale. The noise deadline our downstairs neighbor has imposed (“Can’t you find some way to keep him quiet?”) has passed. Now he can play in his room.
8:15 AM – Inhale. He is on the bus for school.
Most of this past month I have gotten multiple calls or emails during the morning hours- “He kicked a student,” “He climbed on the desk,” “Other parents are complaining,” “He hit a teacher,” “I’m trying to understand his disorder,” “We really love your son and want to help him, but we may need to discuss a more restrictive environment.”
If those calls do not come by 12:55, when he is in his afternoon small-group special ed. classroom, I can exhale.
4:30 PM – Inhale. Hoping for a smooth homework, dinner, and bath routine.
If all goes well and no one is screaming by 7:00 PM I’ll exhale.
7:30 PM – Inhale. Just a bit longer now – PJs, brush teeth, read story. Melatonin has made this routine so much easier at night, but does extend the stretch of time between wakeup and noise deadline in the morning.
8:30 PM – He sleeps. Deep exhale. He has probably been corrected many more times than he has been praised. He has told me detailed stories about school, Thomas the Train, the solar system, insects. He has gone to therapy yet has not been able to keep his body still for more than five minutes all day. He has called me “cute little Mommy,” but called a teacher’s aide “a moron.” He has gotten along better with his little sister and lost his first tooth. He has heard and spoken the words, “I love you.”
Me: Sam, would you like to have beef stew for dinner again, like Daddy and me?
Me: Great. Dinner is in ten minutes.
I am pleased that Sam says yes. I am pleased that he tried the stew at dinner last night. Trying new foods is a sign of health in our son, while rejecting foods is a clue that he is doing poorly.
We sit down to dinner. Sam looks at the bowl of stew in front of him.
Sam: I won’t eat this.
Sam: I didn’t ask for it.
I’d sorted all the vegetables in the pot and put the best-looking ones in Sam’s bowl, because he won’t eat them if they are mushy or misshapen. Ian, Ruby, and I can live with less-pretty vegetables.
Me: Yes, you did.
Sam: No, I didn’t!
I’d poured Sam’s serving of broth out of the steaming pot five minutes before dinner so that it would be just the right temperature for him. I’d taken out four chunks of meat, cut them each into smaller pieces so their size didn’t freak him out, and then tasted a small piece from every chunk to make sure that none of them had that gamey flavor that stew meat sometimes gets, which would also freak him out and end dinner with tears. There had been three volcanoes already today, many more this week, countless more over the years we have been navigating life with Sam.
I close my eyes and take a breath.
Me: I would like you to eat your stew.
Feeding Sam is a delicate experiment, not only because a particular meal might fail if something is not right, but because a single bite of something he finds unpleasant will eliminate that food in his diet. It happened with a spicy bite of chicken when he was five, and now, two years later, he gags at the sight of chicken.
Sam, his voice rising: You didn’t ask me if I wanted this.
Me, my voice rising: I did ask you, Sam. Daddy and Ruby heard me ask you if you wanted stew.
Feeding Sam’s four-year-old sister Ruby is easy. She likes most of what we put in front of her and is eager to try new foods. As I argue with Sam about his dinner, Ruby quietly gets to work on her bowl of stew, the bowl of stew which I did not check over, taste or otherwise de-fuse before serving to her.
Sam, whining: I want to eat noodles.
Me, stony: You can have noodles if you eat your stew.
Sam stares hard at me, then lifts his spoon to his mouth. His small pink tongue darts out to lick the spoon, then disappears. He squinches up his face and says: The broth tastes bad to me.
The words pour out of my mouth hot and mean: You liked it yesterday.
Sam starts to cry. He beats the table with his fists. Ian warns Sam not to let his volcano explode. The developmental pediatrician had given us this metaphor for Sam’s angry meltdowns. There had been three volcanoes already today, many more this week, countless more over the years we have been navigating life with Sam.
Sam yells tearfully that it isn’t fair, that he didn’t ask for the stew, that it tastes bad to him. Ian gives him a second warning. Something shuts down inside of me, as though my anger abruptly recedes, and I gaze toward the stewpot, thinking placidly about throwing my bowl of stew against the purple tile backsplash behind the stove. About how the stew would splatter, how the shards of the blue Heath bowl would fly. Sam lets out a howl and my anger floods back into the foreground. I excuse myself and go to the living room.
I sit on the couch, sadness and fatigue eating at the edges of my anger. Most days, Sam’s issues threaten to overwhelm me. Now seven, he has had a sleep disorder since birth, and gets up for the day, every day, hyperactive, between 4 and 5 am. He is anxious, depressed, irritable, hypersensitive and over-reactive, and has been all of these things — in some way or another —his whole life. We recently found out that he also has celiac disease and cannot eat the gluten in wheat, barley or rye, and so now is on a strict gluten-free diet.
This is the son we have, the person we have to work with every day. Most of the time we do not feel equipped to do this, do not feel confident in handling what comes our way from minute to minute. I am, however, a competent researcher, and so I seek answers. This is one thing I can do.
Instead of working at my actual job, I’d spent my morning emailing with doctors at Stanford University, the University of California at San Francisco and the University of California at Davis, trying to find a physician who understands the relationship between Sam’s anxiety, depression and morning insomnia. We have seen psychologists, psychiatrists, a developmental pediatrician, a holistic pediatrician, a sleep disorders clinic, an occupational therapist, an osteopath, a chiropractor, and a speech therapist — the latter for the oral-motor disorder he developed because parts of his mouth were so sensitive he could not let his tongue go there. No one, except for the speech therapist —who assured us that correcting Sam’s speech should only take three or four years of twice-weekly therapy — has an answer for us, for our child.
When Sam was four, he picked obsessively at his head until it bled, and chewed his fingernails to nubs. When he gnawed off an entire toenail, we took him to a psychologist for help with the anxiety that drove him to tear off parts of himself. The psychiatrist heard his story and said that Sam didn’t need therapy: he had sensory processing disorder, difficulty taking in and figuring out what to do with everyday sensory information: sound, sight, taste, smell, touch, awareness of his body in space. That explained why Sam gagged at certain smells, could not dress himself, had fine and gross motor delays. Why, as an infant, he had cried at loud noises, at sunlight, at the feel of wind on his face. But why?
We are cautious in the way I imagine an abused wife is around her husband when he’s been drinking, certain he will explode, wondering only when. No one could tell us this. I’ve asked them all.
One psychiatrist told me, when I asked him why: We must have a certain epistemological modesty about what it is possible to know. In other words, suck it up and live with it. But I can’t— I need to know why my son is this way, so that I can help him live a less disordered life. I can’t see where modesty about my quest to help my child serves any purpose. Except, perhaps, that it might preserve my own sanity.
I feel so often that I am failing with him. Trying so hard and still failing.
At home we do what the occupational therapist calls a sensory diet to manage his sensory integration dysfunction, and what the developmental pediatrician calls cognitive behavioral therapy to redirect anxiety and rage. We are trying to control his behavior, mood and sleep disorders with nutrition — he takes fourteen different vitamins and supplements twice a day, and sits in front of a 10,000 lux light box every evening. We have adopted strict timetables and firm boundaries and clear expectations because Sam thrives on structure. In these ways, we prevent as many meltdowns as we can.
Still, we are cautious in the way I imagine an abused wife is around her husband when he’s been drinking — certain he will explode, wondering only when.
Ruby finishes her dinner and comes in to see me on the couch. I lie down with her delicate body on top of me, her back to my front. Cuddling. Snugging, as she calls it. Loving. We giggle and I start to feel a little better. She is my love, my light. I feel fortunate to have her, my normal child, my sweet girl.
Me: I feel lucky to have you.
Ruby: I feel lucky to have you too, Mommy.
Sam comes in. I ask if I can talk to him. I send Ruby to the kitchen in search of a gluten-free pumpkin muffin (Omnivorous Ruby has more-or-less happily gone gluten-free because of Sam’s illness). I tell Sam that I feel sad because I’d asked him if he wanted stew for dinner, and I gave him the best vegetables, and I cut up the meat and tasted each piece to make sure it was okay for him, and he still wouldn’t eat it.
His face crumples.
He starts to cry.
I pull him onto my lap and lie back down, hold him on my body the way I’d held Ruby. He is larger and more full of sharp elbows and wiggle. He starts to sob. I stroke his arms.
Sam digs an elbow into my ribs and wails: I hate you, you never do the right thing, I wish you weren’t my mother.
My hands freeze and my heart locks up. I think: I hate you. And I’m going to bite off a chunk of the inside of my cheek with the effort of holding those words in.
I take a deep breath and try something I learned in parenting class. As he howls on top of me, I say, with as much gentleness as I can muster: It sounds like you had a hard time with dinner tonight.
He doesn’t hear me through his sobbing.
I sit up and move his body off mine, position him next to me and look directly into his eyes. Say again, slower: It sounds like you had a hard time with dinner tonight.
He takes a ragged breath and sighs in two parts. Says: Yeah. Dinner was hard for me.
My heart melts a little.
Lock, melt. Lock, melt. This is the tachycardic dance in my chest every day I live with Sam. Sometimes it feels like I just can’t take it anymore, can’t handle the overreactions, the accusations, the sobbing, the vast despair. I don’t sleep enough to withstand it. I ask why he is crying. I think: I hate you. And I’m going to bite off a chunk of the inside of my cheek with the effort of holding those words in.
Sam: Because I feel so bad.
Me: What do you feel so bad about?
Sam: Because you did all that work for me and I didn’t eat it.
I melt the rest of the way. His despair becomes something to feel compassion for, not something hateful, hateworthy. Sam starts sobbing in that way that is not easy to stop. I put my arms around him.
There are things we could, should have done differently with Sam. We should have gotten help with sleep earlier. We should have figured out his sensory issues when he was a baby, not a four-year-old. We should have found a more aggressive pediatrician who helped with referrals and diagnoses. We should have taken special parenting classes sooner.
And there are still questions. Should we medicate him? With what, when his doctors can’t agree on what is wrong? Could we have found his celiac disease earlier? Are we, as our pediatrician once suggested, making too much of this? But here we are, on this couch, in this moment, and we have not done these things or answered those questions, and I have to decide how to respond to the howling boy next to me. My boy.
I murmur: It’s OK. I love you. I even loved you when I felt sad about the stew. I will always love you. I’m not mad. It’s okay. It’s okay. It’s okay.
His sobs start again. I hold him.
Me: It’s OK. Everything is going to be OK.
He cannot stop crying.
Ian comes in and says it is time for Sam’s supplements. That Sam already has two warnings. That it’s not OK to let his volcano explode like this.
Me: No, this is different.
Ian stares at Sam for a moment, taking in the ragged breathing, the small face wet with tears and snot. Then he says to me: Earlier when Sam was upset we did some squeezies, and Sam felt better.
Squeezies are the sometimes-ineffective and sometimes-magical joint compressions that the occupational therapist taught us to do on Sam. They are helpful during a meltdown when words don’t work. I often forget to try them.
I sit him in my lap and squeeze him firmly: shoulders, upper arms, elbows, forearms, wrists, hands, each joint of every finger. Press the flat of my hand into his stomach, compress his ribs from the sides, gently press his head down into his neck.
He begins to calm down. Still taking uneven, gulping breaths.
Me: We will get help for you. For this bad feeling inside. We are working on it.
Sam: Okay, Mom.
I squeeze his smallest, last finger. He catches sight of a toy catalog on the floor and asks to look at it, sitting up next to me on the couch. He takes a shuddery breath. Mommy and Daddy both try our best. We don’t always get it right. But we are always trying our best.
Sam, opening the catalog: Is that a bouncy house?
Then, with more enthusiasm: Is that a pirate sandbox?
We look through the catalog together, and then I tell him it is time to go take his supplements. He does not argue. He looks at me.
Sam: I wish you could do my bedtime reading tonight, Mom. Daddy was giving me warnings. He thought my volcano was exploding.
Me, thinking for once it is Ian and not me who has missed a cue: It wasn’t your volcano, Sam. This is something else.
Sam: Daddy thought it was the same thing.
Me: Mommy and Daddy both try our best. We don’t always get it right. But we are always trying our best.
Sam: Okay, Mommy.
Sam goes into the kitchen. I sit on the edge of the couch alone for a moment.
I take a deep breath, and then go back into the kitchen to find my family.
So why is my Friday child confused and behave as though he’s Wednesday’s child instead? B doesn’t stick to the old English poem. He got confused along the way. I know exactly when that was. When he was twelve days old and caught the dreaded meningitis.
That was the worst of times.
We were told he wouldn’t survive the night, but he did. We were told he would never recognize us or smile or manage any basic functions, but he did. I won’t bore you all with the setbacks, the heartache every night, the months spent in hospital, how none of our friends visited, the long, drawn-out wait to get home.
Those are for another time. Maybe.
This post is about now, this minute, how I am feeling. I have never written anything like this down before, but I am an avid follower of Aunt Becky and she told me to, in all her posts about Band Back Together.
I don’t know how to make this a nice flowing post rather than a list of illnesses, surgeries, appointments and setbacks. I suppose I’m having this issue because that could be how you would sum up B’s life so far. I know that’s how others see him. When we meet for a Girly Catch-Up date, it’s never, “how are you all?” it’s “what’s B having done now?”
My friends are great but I’ve been labeled The Coper; or she who deals with all that life throws at her. B is labeled as ‘poor thing.’ Not a great label for an intelligent, reasonably active eight-year old. We have settled into this comfortable way of coping that I don’t know how to let people know that sometimes I am not coping very well.
Maybe Band Back Together will be the friend’s ear I can bend.
Anyway, back to my child of woe.
We were lucky to get pregnant with B and we were lucky to have a nice ‘normal’ pregnancy. B was born on his due date and then things started to go wrong.
B was labelled with Torticollis and Talipes within the first few days of his life.
It threw us but we had just come to terms with all of that when B caught the dreaded Meningitis, caused by late onset Group B Strep. Again, not to bore you with that hell of a first 6 months, B managed to cling on and then thrive. He was considered a ‘floppy’ baby due to, what we figured was the brain damage caused by the meningitis, so all his milestones were delayed. He also couldn’t work his muscles properly, including swallowing, so B was fed through a gastrostomy.
When we thought we were through the worst year of our lives, we were hit with another side swipe, B’s hip was dislocated and deformed, it needed immediate surgery. That surgery was deemed successful and so we carried on. We even began to relax a bit and focused on having some more children. B still had some problems, mainly with his muscles, but we had got him off his gastrostomy and, again, he was thriving.
So, we relaxed and concentrated on other issues, such as my infertility and the long rounds of IVF, but again another story for another time.
During these years we were eventually blessed with twins Z and E. All seemed well in our household, the girls were healthy and B was doing well.
Then, when B turned 6 we were knocked over again by the diagnosis that his hips weren’t right still. So major surgery followed, which involved B being in an hip spica for 8weeks (not great for a 6yr old boy and a mum who also has 2yr old twins to look after) and wheelchair bound for many months more.
However, we all survived, well I am a’coper’!
B was just beginning to get mobile again when a doctor noticed his face was looking wonky.
A year of maxillofacial appointments followed which ended with us being knocked over again by the diagnosis of Juvenile arthritis. The arthritis had been attacking his jaw joints for some time unnoticed and had now deformed them to the point of major facial surgery required.
However, they cannot do this while the Arthritis is active, so cue major arthritis drugs. Now B has to have weekly injections, for years, that are lowering his immunity, great.
However, we are coping!
Now factor in his hips update as well last week and we are cooking! B’s hips have, again, grown wrong and further major surgery is required, probably in January. Again my lovely son will be wheelchair bound because of his hips, injecting for his arthritis, struggling to eat because of his jaw deformity and tiring due to his muscle issues. Again, I have taken on this diagnosis and have dealt with it and I am prepared for it. What I didn’t expect was for his orthopaedic surgeon to say that things don’t seem quite right with B’s muscles and they seem to be getting worse.
Well, yes, he has hypotonia from the meningitis. obviously his muscles are not right.
That is not what he meant, the surgeon knows of B’s past history and thinks there is something else affecting him.
So that is why my gorgeous, bright, loving son is now being tested for Muscular Dystrophy and the medical view is that he probably does have it.
WHY?? I mean, hasn’t B gone through enough?
Haven’t I gone through enough? Haven’t all our family gone through enough?
B has, at the moment, hypotonia, hypermobility, hip problems, arthritis, jaw problems and now possible MD. Any 1 of these diagnoses would upset a parent, my son has all of them.
I am not coping any more, outside it looks like business as usual, but inside I am crumbling. I look at my friends’ children and, selfishly, wonder if I can pass on just one of B’s problems to them. Why did he get all of them? Even the doctors can’t believe how unlucky he has been. When friends worry about their child’s broken wrist, I think that I wish B could do cartwheels and break his wrist like that as well.
Then I feel bad for not having sympathy for them. Then, I overcompensate for my guilt by offering help and being the friend they can always turn to. They take that help because they know that I am a coper whereas they aren’t. They make half-hearted promises of help in return but, they have their own families to look after and B and I would need too much help. My hubby is pretty hands-on with the house and the kids but he has never been to a hospital appointment with B, never.
I feel it is B and I against the world sometimes.
So, there you have it, my child of woe.
This has been quite therapeutic, I feel like I can now go out into the world and carry on ‘coping’ again.
When I’m struggling he will be the rock I can depend on
It’s funny how circumstances in life change and put things in perspective. It was just 7 short years ago that I went through a truly nasty divorce from a truly abusive person. Something that seemed impossible to overcome. But I did and I came out stronger then ever. Through that I had my rock, my best friend and now my husband. But, I guess happiness is all relative to the situations at hand.
I have three children. Two from my first marriage and one from my second. They are all great kids. Each has their strengths and, like every other human, they have their weaknesses. My daughter she is incredibly smart and athletic but she is extremely over dramatic and some what self centered. My youngest son is the sweetest thing you will every meet and hilariously funny but we have had struggles with some medical problems with him. Recently we found out he isn’t being defiant about using the potty but is instead struggling with an issues that doesn’t allow him to have control over it. Imagine how guilty I felt after yelling for a year about the accidents. Then, there’s my middle son, part of the reason I’m really here. He so incredibly affectionate, he craves attention and seeks approval. But, we just found out he has ADHD. Which now makes the issues in school, the tempter tantrums, the lack of impulse control all make sense. Again, imagine my guilt when I realized he’s not trying to drive Mommy crazy today, he just can’t control some of these things.
So, I need to change. I have to learn to be the support system he needs to deal with the issues in front of him and those he will face in the future. I need to understand he may not do things or react to things the same way his siblings do. I need to accept that it is OK to handle things differently with each child because people are different and we all need different things in life. All of this I can accept. I can adjust and move forward with my children’s best interests in mind. But, what about everyone else.
My mother, who I personally think struggles with her own un-diagnosed disorder. It’s like her and my son fuel each others anger. Other parents who may not understand that he isn’t a “bad” kid. Other kids who won’t understand why he reacts to things the way he does. But, what about my husband, the rock that is supposed to be there for me. What do I do when he doesn’t get it. I think that’s the hardest part.
I know what I need to do and it my choice to take steps to do it. I choose to put my children first and do everything in my power to help them. But, I can’t make someone else’s choice for them. Today I feel like I have a new choice, my husband or my child. But, that is no choice. My husband is a grown man who should have the capacity to act like an adult and my child is, well, a child who needs his mom.
My son had a bad day yesterday. He was as his grandparents to eat dinner with them and was lashing out and very argumentative. My husband went to get him and bring him home. As soon as they walked in my husband was yelling. I don’t know what happened but I couldn’t have asked if I wanted to over the yelling. So I raised my voice and yell that’s enough. Next thing I know dinner is thrown across the floor and my husband storms out of the house and slams the door. I call him and the only response I get is don’t call me. I send him a message about how we need to handle things differently and yelling is not the answer because it only make him more angry and agitated. I explain ADHD is a neurological disorder not just a kid who doesn’t feel like listening today. And, the reply back is “if this behavior is going to be tolerated I can’t be with you I need a DIVORCE because I can’t do this anymore. I wont tolerate disrespect from you or him.” My first thought, who is this person??? My second thought, there’s the fucking door we don’t need you.
This is my best friend, my rock, my support system and here I stand feeling abandoned. He didn’t come home last night. And I feel like I should care, but I don’t. I am angry and hurt and disappointed. I have a child that needs me. I don’t have time to waste on an adult who wants to act like a child.
I think when is comes to wives he doesn’t have it so bad. I will be honest I am not a great cook. I barely cook at all and I’m not a huge fan of house work. But, I go to work every day. Up until recently, I was supporting the family financially. I don’t nag him about money. I don’t really fight with him about anything. I personally think we have a good sex life. Things have been good, for me at least. And then this. The line that keeps playing in my head, I won’t tolerate your disrespect. Me? The wife who supported you through job after job. The one who stood by your side through all the struggles the past 2 years without arguing or nagging or resenting you. Disrespect? For standing up for my child? This is where we throw out divorce? What response is he expecting from that? Am I supposed to be a Stepford Wife. A “a servile, compliant, submissive, spineless wife who happily does her husband’s bidding and serves his every whim dutifully.” If that’s the expectation then he lives in a fantasy world.
Everything I have been through in life has made me stronger. Maybe it was preparing me for this. For the challenge I was going to have to face alone without the support of those who I thought would always be there for me.
All I know is right now I need to put on my cape and play Supermom as best I can. Will I fail? Most definitely. I’m human, but I need to be the adult and try my best everyday to do everything in my power to give my children everything they need. Everyone else can either get on board or get out of my way.