by Band Back Together | Jan 25, 2019 | Anxiety Disorders, Ask The Band, Coping With Anxiety Disorders, Ehlers-Danlos Syndrome, Family, Fear, Feelings, How To Help A Parent With a Special Needs Child, Intracranial Hypertension, Mental Health, Parenting, Special Needs Parenting |
You know about my kids now here’s a little about me.
I am extremely stubborn.
I hate admitting I need help.
I have a ton of health problems: anxiety, depression, EDS, IIH, and fibromyalgia. All 3 of my kids have autism with other co-morbidities. My husband is my rock but he can be a pain in my ass.
I take on a lot with the boys because they’re mine it’s not up to someone else to do it and I do see a therapist.
She thinks in dealing with the latest with what I call my shitshow, I lost myself in there somewhere.
I think she’s right in a way, I’m so mentally tired I’m surprised I can form complete sentences.
I’m getting away next week for 10 days.
For the first time in 4.5 years, I’m going to visit my mom, my dad, and my sister. I haven’t been together with the three of them at the same time in a long time.
I’m actually really excited… but scared too.
Scared of having a good time.
Is that weird?
Scared I’m going to be in pain and they won’t understand. Scared of being away from my kids for so long.
Okay, I’m scared shitless.
by Band Back Together | Nov 13, 2018 | Allergies, Anger, Anxiety Disorders, Celiac Disease, Childhood Diseases And Disorders, Coping With Anxiety Disorders, Digestive Disorders, Family, Feelings, How To Help A Parent With a Special Needs Child, Living With Food Allergies, Mental Health, Parenting, Pediatric Caregiver, Pediatric Mental Illness, Pediatric Trichotillomania, Special Needs Parenting, Trichotillomania |
This evening the conversation goes like this:
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.
by Band Back Together | Oct 30, 2018 | Arthritis, Childhood Diseases And Disorders, Chronic Pediatric Illness, Family, Feelings, Grief, Group B Step, Health, Help For Grief And Grieving, How To Help A Friend With Infertility, How To Help A Parent With a Special Needs Child, Infertility, Loss, Meningitis, Muscular Dystrophy, Parenting, Pregnancy Complications, Sadness, Special Needs Parenting, Viral Infections |
Friday’s child is loving and giving.
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.
by Band Back Together | Jan 1, 2016 | Autism, How To Help A Parent With a Special Needs Child, Special Needs Parenting |
I hate skiing. I really do. I don’t like the cold, the snow or the clunky equipment. Still, some eight years ago I brought Sam up to the mountain to attempt skiing with Special Olympics. Truthfully, I was kind of hoping he would hate it. I could then say we tried and move on with my good mother halo intact.
The plan for the first night was to get a feel for the equipment. Sam popped his boots into the skies and intuitively bent his knees and found his center of gravity. I remember saying, hey that’s great, enough for today, we’ll come back another day. But Sam looked up at the big mountain, “Want ski!” That isn’t the kind of statement you can ignore, particularly when it comes from a kid who barely talks. That began eight years of the mad Tuesday night dash to Wachusett Mountain where Sam worked with wonderful volunteer coaches like Melissa, John and Dave and in earlier years, Maureen, Lynn, Kevin and Ken. Each taught Sam something important. With their help Sam quickly progressed to the chair lift.
I remember the first time he fearlessly skied down the mountain sporting a grin bigger than his face all while reciting “Green Eggs and Ham.” Everyone cheered. And so we continued. Saturday we completed our eighth finals at Wachusett with teams from all over the state. The waiting room was noisy, confusing and congested with people: your basic nightmare for a kid with autism and lots of sensory issues. Somehow Sam rose to the occasion, displaying a tolerance he typically can’t master. He patiently waited in the start position at the top of the hill for over 30 without loosing his cool. He cheered through endless awards despite the background din of a few hundred people and the reverberations of a noisy microphone.
I mentioned to one of the other moms at the beginning of the finals that Sam really didn’t care about the metals or winning. We participated for the weekly ski practices. But I watched Sam as the day progressed and I saw something different. I saw tolerance and perseverance. I saw pride. It is true Sam wouldn’t mind if everyone in the room got a medal except him. It wouldn’t even slightly dent his self-esteem. But that isn’t to say he doesn’t like metals. This year he won three. A bronze, silver and finally a gold. Each time he went up to retrieve his medal he stood on an increasingly higher pedestal. Each time he smiled more broadly. By the third trip up he glowed.
To every coach, volunteer, mom and dad who offered kind words or an encouraging smile over the last eight years: You’ve converted me. No, you’ll never see me anywhere except the base of the mountain, it’s true. But you have made every trek to the mountain worthwhile. And I can’t thank you enough.
by Band Back Together | Oct 10, 2015 | Anger, Anxiety, Attention-Deficit Hyperactivity Disorder, Denial, Developmental Milestones, Family, Feelings, Help with Parenting, How To Help A Parent With a Special Needs Child, Impulse Control Disorders, Individualized Education Plan, Parenting, Special Needs Parenting |
In kindergarten, my daughter was singled out by her “crazy old lady/about to retire” teacher who said Maddie was “very inattentive and probably needed to be evaluated for ADD.”
I was all, “this women has a whole SEVEN kids to look after with a damn assistant! She obviously is lacking and totally sucks at life to not be able to handle SEVEN kids and she’s the one who needs to be evaluated. “
Unable to even fathom such a thing for my perfect little princess, I took her out of the expensive private school and started first grade in the public school. The local school a few blocks away is really new and great and shiny!
First grade began, and she seemed to be doing well until our first Parent/Teacher conference. Once again, ADD was brought up by her very young, energetic teacher.
Again, I couldn’t wrap my brain around this possibility. My daughter was so caring and sweet and there was no way in living hell there was something wrong with her!
But I relented, and took her to see the pediatrician armed with a heavy dose of internet literature regarding the scary ADD possibility. What I didn’t expect was to identify with most of the symptoms listed on the checklist.
So, with a heavy heart, I accepted that yes, my little angel was indeed struggling in school. She was beginning to show signs of a low self-esteem as a result of her poor behavior. She was showing the insensitiveness that comes with a child with ADD. She was unable to see how others may feel. She was pretty self-centered.
I waved my White Flag and tried to stop feeling sorry for myself or guilty for something I could have done to prevent this from happening. I gave up the idea that my daughter would be a stellar student and be the top of her class. I mourned (seriously GRIEVED) the possibilities I had built up all through her early years of how magnificent she would surely be. I shed real tears and experienced a heartbreak that I didn’t think was possible.
I felt extremely defeated until I buckled down and became her advocate. I fought long and hard to get her school to become involved in her special education program that would work for her. I went full speed ahead with every behavior modification the school could provide that might make a sliver of a difference.
Over the years, she was given an Individualized Education Plan (IEP) with in-school modifications for test-taking and a more thorough explanation for her assignments. Her seat was moved in order to minimize distractions and although she continued to struggle, she was really improving.
Along with the modifications, we began trying medication. I was overjoyed when we finally found one that really helped her without the harsh side effects. This process was heartbreaking, but we found the one that works for her and for this I am grateful.
So now, here we are in the fifth grade. Report card comes home and finally there are mostly B’s on it. There are two C’s, but compared to last year when she was mostly C’s and D’s this was such an amazing moment for me and her to see everything we were doing was paying off!
I was so excited that I wanted to dance around the room; this was not something that I am used to. This was something that has taken so long. I didn’t even it was possible to see a report card such as the one she got today.
After saying all of this, maybe you can understand why, after sharing with you my pure bliss, I would be upset when you complain to me, a whopping two minutes later, about the one B your daughter received on her report card when every other grade was an A. How I got frustrated, left the room and didn’t want to show you my daughter’s report card.
I do not make this a competition, as you so rudely accused me of. I would never have those sort of expectations for my daughter after every hurdle we have been through to get her to this point. That would just be unrealistic.
I know that your daughter is two years younger than mine and is enrolled in all advanced math and reading classes. I know that she is a very bright little girl and I would never ever try to diminish that! But I had a happy moment and you just don’t understand how complaining about that one B would make me feel. Here I was rejoicing all the B’s that were on Maddie’s report card and you were looking down on that very same grade; the one flaw on your daughter’s perfect grades.
So, just when I think we know everything about each other I suppose you don’t really know the entire story of the ADD path. And I don’t even know how to make you understand.
When you told me I was turning it in to a competition, it felt like a slap in my face. It showed me that your perception of me is way off. So now what? How do I make this better? After three and half years together, I love you. But I need you to be on my team with this. Not accuse me of a competition.
I wanted you to jump up and down with me and celebrate this victory.