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 | Oct 29, 2018 | Coping With Depression, Depression, How To Cope With A Suicide, Loss, Major Depressive Disorder, Mental Health, Mental Illness Stigma, Premenstrual Dysphoric Disorder, Suicide, Therapy |
This week has been a struggle.
In brief: I have a chronic mental health condition, and have struggled for years to find mental and emotional stability. I’m also a woman, and am impacted heavily by hormonal fluctuations that occur on a monthly basis.
Anyone who feels that I am just whining can do me a favour and stop reading right now.
Through medication treatment and self-discipline, I have found a level of stability that has been unparalleled in recent years of my existence. All this good goes out the window, however, for a period of a few agonizing days on a monthly basis.
Is it predictable? Yes.
Does that make it any easier? No.
Recently, I’ve been told that I am not a good “fit” for certain mental health services that I feel should apply to me. First example: I finally had an appointment with the Women’s Health Concerns Clinic outpatient services this past Thursday. I spent months looking forward to this appointment, hoping it would provide some relief.
Here’s what I learned:
Don’t put all of your eggs into one basket.
That’s a worn out old adage, but there is much truth behind it. The psychiatrist on staff at the Women’s Health Concerns Clinic felt that, due to the fact that I have depression occurring presently as part and parcel of my chronic mental health woes, I am not a good fit for the clinic’s services.
I do not have “textbook” pre-menstrual dysphoric disorder (PMDD) symptoms. Also, in terms of medications that are usually helpful for PMDD, I am already taking a good selection of those recommended for front-line intervention, including vitamins and minerals such as B6, Calcium, and magnesium. There is potentially some room for dosage adjustment, but in terms of there being a supplementary medication trifecta for PMDD, that is it, and I’m already taking all of them.
I am not currently taking the “recommended” antidepressant of choice for PMDD, but the one I’m on now has done so much good for every other aspect of my life that I am extremely hesitant to swap it out for another medicine that might not work so well. Trintellix has helped me immensely. I don’t cry on a daily basis anymore. I’m more open with everybody: strangers, friends, my husband, you name it. I can actually get to work most days. I feel stable, I feel good… most days. Most days, I am an absolute delight – and I love it!
Obviously, I am hesitant to swap out this medication for one that is more “tried and true” for symptoms of pre-menstrual dysphoric disorder. There is absolutely no guarantee that the antidepressants that have been clinically studied for PMDD effectiveness would work as well. In fact, I’ve tried most of them, with little success. So why swap out something that works well, for 20-ish days out of the month, for something that has been scientifically proven to be more effective for PMDD symptoms, but does not work well with my unique chemical composition? It makes no sense.
I’ve talked a lot about medication and I want to address something that I learned the hard way, ages ago:
In mental health, medication isn’t everything, Especially when it comes to more complex conditions. But my efforts to connect with a therapist or mental health counsellor at present have left me feeling even more lost and alone in my journey.
The Women’s Health Concerns Clinic heard my request to connect with a 1:1 therapist or counsellor in the Hamilton community, but did not offer to connect me with any such services. I was offered a referral to a mindfulness group, something I am not sure I will pursue due to the fact that most publicly operated mental health groups take place during the daytime hours, and I need to go to work during the day so I can support myself financially.
Sure, I could take time off work for the group, but doing so may jeopardize my employment and would be difficult to finance at this point, since any hours of work missed for the mindfulness group would constitute unpaid time off.
Desperate, I decided to look into private therapy options, and sourced out a psychotherapist’s website via the Psychology Today web page. This therapist sounds like a great fit, based on her specialties listed on her online profile page. I contacted this psychotherapist and asked about accessing her services. Obviously, private therapists cost money, something of which I am well aware; however, this therapist recommended that I seek to gain a referral to her through my employer’s Employee Assistance Program, which could, potentially, fund up to four sessions with this therapist to see if that would be beneficial for me, and also so I could establish if I enjoy working with her on a 1:1 basis and wish to pursue services further.
Wonderful!
I called up the EAP and explained the situation. The response I received was absolutely gut-wrenching: Because I have a chronic mental health condition, they are “unable” (or, unwilling) to provide me with a referral due to the fact that my therapy goals may not align with their mandate of connecting individuals in need with short-term counselling services.
It would be amusing, if it wasn’t so sad, to learn that even designated mental health support services stigmatize against people presenting with more severe mental health conditions.
What an eye-opener that was
In light of the recent high-profile suicides of wildly successful fashion designer Kate Spade and world-renowned celebrity chef Anthony Bourdain, I must point out that turning away a person who struggles with mental illness from suitable services because they don’t fit the proclaimed mandate or envisioned purpose of the service is a very, very dangerous practice.
Anyone reaching out for mental health support should at least be connected with suitable services once they make the effort to reach out, even if the initial service with which they’ve made contact might not be the best fit.
It is highly unwise to tell a person struggling with a chronic mental health disorder that they can’t access services because they have the wrong kind of mental illness.
by Band Back Together | Oct 24, 2018 | Family, Feelings, Love, Marriage and Partnership, Marriage Problems |
Yesterday, I found within me a sharp so bitter it could twain my marriage and dismember a family.
In one gestalt twist of grievance, I realized I had the capacity to cut relationship with the detached precision of a pathologist.
My scalpel tongue gleaned against my clenched jaw in clinical consideration of the Y Cut as The Husband and I hit the first immutable impasse of our marriage like a hearse.
It was entirely mutual.
The smell of potential decay cleaved in my nostrils like carrion.
I stood in the rigor mortis of that moment and knew I had to yield or the damage I would do to my marriage would be irreparable.
My pulse races now even to reconsider how concrete was that tomb.
An expansive, vile id lurked inside me like a dark mine ready to deploy.
The Prince of Peace lives there inside me too.
It was the moment just before the moment too late.
It was taught, tight tension as sharp as a guillotine.
It was entirely mutual.
I bit my tongue hard enough to taste salt.
I drew in Light.
I put down being right.
I put away I don’t want to.
I shelved blame.
Through Grace,
by His strength alone
I chose Love.
Mercy pardoned us as we forgave each other the trespasses against us.
Nothing.
Nowhere.
Is more important to me than this marriage, this family and a life together.
by Band Back Together | Oct 22, 2018 | A Letter I Can't Send, Domestic Abuse, Emotional Abuse, Feelings, Helping Someone In An Abusive Relationship, How To Deal With A Self-Destructive Friend, How To Help A Loved One Who Self-Injures, Psychological Manipulation, Self Injury, Self Loathing, Self-Destructive Behavior, Teen Self-Loathing |
In my teens, I was toxic to everything I touched.
I didn’t mean to be – I just had a lot of pain inside and was too young to understand the connection between that and the reckless behavior I exhibited. You understood it and prayed for me, always hoping I would see the light.
It wasn’t that I was a trouble-maker as so many claimed. Yes, I vandalized an elementary school in my home town, thoughtlessly claiming the rooftop with my giant ‘My Name Was Here.’ Yes, I ran away once, all the way to Tennessee, and yes, I became a teenage mother at the age of sixteen.
Maybe I was a trouble maker.
And then into my twenties, the bad choices and reckless behavior chose to continue itself. I’m sure you remember the destruction I left in my own life after post-partum depression led to the loss of my two children.
Years 23-29 are a blur – six years in a hellish nightmare that I had convinced myself I deserved. You screamed at me that I deserved better, that my children deserved better. I assured you that I believed you – and stayed in the nightmare anyway, because that’s what I deserved.
I lied to my friends and my family. I became a stranger even to myself.
The worst part was marrying my abuser on your birthday as if to honor you in some sort of way. ‘Look Mama. I did it. I married what I earned.’ I spent my entire twenties hating myself for my teen years – and so another decade was lost to my toxicity.
I didn’t mean to lose those years with myself and my children.
It wasn’t until my thirties that I started to feel like you know – maybe I gotta start forgiving myself in order to act right. I read all the mushy quotes, convinced myself I was beautiful inside and out, walked away from everything that caused me harm and for a while I was so happy.
I was so brilliantly happy and dazed by how very blessed my life was – I even found myself being loved by someone who never raised his voice or hands to me.
But here I go again – unable to forgive myself and unable to stop the path of destruction. I can see it happening. I know I should stop it. But I can’t. Not until it’s all burned to the ground.
Because I’m toxic.
And I don’t know that I ever won’t be..
by Band Back Together | Oct 19, 2018 | Anger, Anxiety, Anxiety Disorders, Attention-Deficit Hyperactivity Disorder, Autism, Bipolar Disorder, Bullying, Child Protective Services, Childhood Bullying, Coping With Bullying, Depression, Family, Feelings, Guilt, Impulse Control Disorders, Loneliness, Major Depressive Disorder, Military Deployment And Family, Obsessive-Compulsive Disorder, Oppositional Defiant Disorder, Pediatric Caregiver, Sadness, Uncategorized |
A wise woman told me to write up my story and tell the hell out of it. So, here I am.
Sometimes, I feel like I have the only kid like mine. My son was diagnosed between 3 and 4. He is one of 3 I have, with special needs. For the time being, I’m focusing on my oldest.
We knew something was not right with him. He threw an 80 lb. mattress across the room at me. How does a 3 year old do that? He never slept. He would have meltdowns and throw things at me. I have gotten black eyes from everything from a book to an army boot to the back of the head.
Thankfully, I had a wonderful doctor tell me how to deal with the meltdowns and those came less and less often. However, he would wander. We had two incredibly scary events where he wandered off when he was 5, but he had angels and off duty police officers watching out for him.
When we got the Autism diagnosis, I knew nothing about Autism. Most people equate it to the movie Rain Man. I had never seen the movie so I had no clue. All I knew was Doug Flutie, an NFL football player, had a cereal that’s proceeds went to autism awareness. The only reason I knew that is because I saw the commercial once while my husband was watching a game. That’s all I knew. Nothing else.
So, the journey was rocky and hard. The first year my husband was stationed in Korea, so he was not around to learn what I did.
I relied on “friends” I thought that I had to help. Instead, I got investigated by CPS (child protective services) for making everything up. The only thing that was founded was that I was stressed. (Gee no idea why???)
My son’s first year in school was horrible. Open classroom and he would have meltdowns. They did not want to deal with him, so 5 out of 5 days he went to school, he was sent home early. I had no idea what I was supposed to be doing or how the school should have been handling him.
Thankfully, the school he was moved to had a wonderful Spec Ed teacher that knew what she was doing, to this day, I will still kiss the ground that she walks on.
He improved and stayed in school. Had messy moods and lack of sleeping so we had to join the medicine bus. So many doctors and specialists, “you should do this” and “don’t do that and this and that.”
The kid is a loving, sweet amazing kid. He has a hard time showing that. He has many co-morbidities along with his autism. ADHD, ODD, Anxiety, depression, hypermobility, OCD, etc.
In our journey with him, we realized he wasn’t like most kids with autism. So many can use an iPad and it’s nothing. A phone and no problem. With my son, he can not tell the difference between reality and what’s on the iPad or phone. We tried. We tried so many times, so he could be like his friends or brothers. But it ultimately turned out so, so, so, so bad.
When he was 11 a child that bullied him at school told him that triple x rated stuff on the internet was bad and if you looked at it you were super special because not everyone’s computer can look at it. Ever since that day, my son has been fixated on it. At 11 he had no idea what it was, just that it was special and not everyone could see it. As he grew into puberty it got worse and worse. I still don’t think he knows exactly what its supposed to mean to a person, because his thinking age is around 10, but he knows its bad, he’s told his therapist it’s bad. He’s tried to look at it on the internet at school.
We had everything on our cable blocked so that he could not watch it or order it and somehow he got around it and we had a $900 bill. (I’m still drinking coffee to cope with that one)
Now he’s in a dark, dark place. He’s obsessed with death. He writes and writes and writes about death scenes. Then he tears them up. He talked to his therapist, but he sees no problem. We can not even let this child watch cop TV shows it’s that bad. Nothing to do with magic, or death.
My husband and I have been watching his behavior as of the last 2-3 months and I’m not liking what I see. Neither does my husband.
His moods are very erratic. One minute he’s happy, the next he’s angry and ready to fight. Then he’s happy. (Note: he has not touched a soul, just has gotten angry with words) These mood changes make me think he’s bipolar. We were warned that he probably was a few years ago. We knew it was coming.
Now we’re questioning the doctor, because my husband and I are so completely and mentally drained from dealing with his moods and trying to keep his brothers from upsetting him. The doctor is trying to tell us that he’s making it all up and that we just have to deal with it. My first thought, no lie, was, “The fuck you mean deal with it? I’ve BEEN living with it! We came to you for help on how to KEEP dealing with it, asshole!” I, of course, did not say that, because I was too tired.
This kid has been in-patient 7, lost count after that, times for being bullied and being suicidal. I’m scared to death something is going to set him off. Granted all sharp instruments are kept under lock and key. We continue to try and understand what is going on, but our son can not tell us because he does not remember the mood swings.
His doctor said, because he does not feel bad for being angry and mean, he is not bipolar. DUDE, he’s autistic, he’s not going to feel bad.
I had 2 major surgeries and he bumped what I had surgery on, I started crying and he didn’t give two craps. That does not mean he’s not bipolar!
It’s hard to keep him busy. He gets bored with puzzles and crosswords and TV, because we have seriously toned down everything that he can watch. I’m just at a loss on where I should go from here. There’s probably a lot I left out of his story, I’m sorry for that.
Here’s another twist on his story. He legit thinks he’s from another dimension. He thinks he is a female from another dimension, that he will leave to find when he is 18 years old. There are artifacts all over the world that he has to collect in order to remain safe in this other dimension. He thinks that the here and now is just temporary. Because of his beliefs with this, he can not watch or read anything that involves fantasy. Because he can not and will not be able to tell the difference between what is real and what is not.
His therapist and I had a long talk today about it. I had to stop from bursting into tears, because I have never heard of another child like mine. I explained that to him and asked what do I do. He said I do what I’m doing… Be mom.
It did not help when he said that in the 13 years that he had been doing what he does, he had never met another kid like my son.
Sometimes, being a mom is rough as hell when it feels like no matter what you do, it’s out of control. You know all those books you read before you have kids? I never read any chapters on Autism or special needs and I sure as hell never read any on how to deal with this kind of life for your child.
I guess I should add that I am dealing with my own depression and anxiety right now. My anxiety is off the charts and my shrink threw me into counseling. Didn’t even ask just threw me in. I also have a chronic illness and it flares up in the form of pain when I’m extremely stressed out, the last 3 months I’ve gotten little relief.
It’s sad to say at this point, I’ll deal with me as it comes. I just want my son to be okay. I know I need to worry about me, too. If he is okay, then I can be okay.
Basically, I’m writing this because I just need to know I’m not alone. I’m so tired. My gut instinct with this kid is never wrong. My gut says he needs help with this anger thing and his doctor is being stupid.
