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.
by Band Back Together | Oct 8, 2015 | Anniversary Reactions, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Family, Feelings, Grief, Help For Grief And Grieving, Loss, Loved and Lost, Stress, Trauma |
First, people are afraid of what to say, and often say nothing. This is a mistake. Many people are afraid to bring up the deceased child, fearing it will open wounds and raw feelings. But in my opinion the hardest thing is when people don’t talk about Maddie. It feels like she was never here, and this is what is heartbreaking. It is nice when people say, “I thought of Maddie today,” of “I saw a kid in a dress like the one Maddie wore at whatever today.” Or “I miss Maddie.” These things help, not hurt. Make us feel she is not forgotten. Sending a keepsake with the child’s photo or name, things that help her be tangibly remembered are nice. We have received AMAZING things and we cherish everything.
Six years ago, one of my friends lost her father. I was living across the country from her, and I was terrified. I felt guilty that I had my dad and she didn’t. So I didn’t say anything, and I ruined our friendship for a while. I am very lucky she gave me another chance. She has been there for me since Maddie passed away. I have horrible regret about the whole thing – all I had to do was call her and say, “I’m so sorry.”
Religion is a potentially explosive way to comfort. Unless you absolutely know 100% percent the person will be comforted by mentions of faith, don’t go there. Religion is a very complicated thing in the wake of a child’s death, and they may be angry at God or confused as to how to incorporate the death of a child into the religion that they have known to have their best interests in mind. Even someone you know to be intensely religious may be having a crisis of faith in the wake of a child’s death, and could be angered/saddened by mention of religion. Especially stay away from, “God wanted her more than you,” or “God needed her more,” etc.
I don’t care if it is the all powerful creator of the universe, you don’t tell any Mama that anyone wants her baby more than she does.
So many people hate seeing their loved one in such pain and want to fix it. Consequentially, they start talking about how you have to move on, that you will see them again, the child is with God, it will get better in time, etc. All things they think will “fix it.” Don’t try to do this. Follow the lead of the parents. Discuss what they want…if they go to those places you can discuss those things, but don’t try to steer it there. Sometimes I want to talk about Maddie and the unfairness of it all, and other times I want to hear funny stories or talk about reality TV.
Don’t be afraid to show emotion. Many people feel they have to be strong for their friends, that they can’t cry or show emotion. I don’t think that is true. You can be strong AND be emotional. If tears come, don’t fight them. This shows your friends that you, too, are crushed and sad and lost.
Address the horror. People often worry about addressing how awful the situation is, but the parents want to hear that people get the hell they are in. The parents feel alone when they don’t think people understand how awful this is. Saying things like, “This is the worst thing. I am so sorry and sad that it had to happen to you and your child,” helps.
Food is very helpful. The last thing you want to do when mourning is worry about eating. There are always people around after a death, and the last thing you want to think about is feeding them. Mike and I never would have eaten if food hadn’t been sent to us. A gift of food also tells the parents they are loved.
Say or express something you never have before. If you have never told the person that you love them, come right out and tell them that you love them. If you’ve never held their hand, hold their hand. Give hugs. These expressions mean a lot.
Finally, my biggest advice is to not be afraid to take initiative. We often say, “let me know what I can do,” in a situation like this. Well, I can tell you that Mike and I had no idea what we needed. We were so lucky that we had friends and family rally together and just take care of things. A few came to town to help out. One friend organized food, another cleaned my house, two bought the clothes Mike and I wore to the funeral, one put together Maddie’s slide show, a few organized the reception after her service. I could go on and on. I didn’t have to worry about anything because I knew my friends and family would handle it.
Be there for your friends. Call, email, text. Tell them they don’t have to respond. Let them know you are thinking of them, and their child, all the time. Don’t drop away after the funeral – that’s when they’ll need you the most. Be the kind of friend that you would want to have.
by Band Back Together | Sep 27, 2015 | Chronic Neuropathic Pain, Health, Pain And Pain Disorders |
In 2003, I had my beautiful, gorgeous and sweet baby, 3 weeks early and after 5 days (yes, 5 days) of labour. As you can well imagine, when I got to the hospital (which also happened to be my birthday) I had been in labour for 4 days. I was tired, my blood pressure was going up and it was time to get her out. Physically, she was fine, so there were no worries about my daughter.
My back felt bruised, swollen and unsteady and I had had an epidural with her birth, but I assumed that it would go away. I went back to work ten days later as I worked for myself. Three months later – I still felt unsteady. My spine felt tender and I was getting concerned. I was out for a walk with my 120 pound dog, toddler and infant. My toddler ran out in the street and I went to scoop her up. It felt like I had been shot.
My legs went out and I was in white-hot blinding pain. It took me almost forty-five minutes to get home from my usual five minute walk. I managed to get us into my bedroom, shut the door and call my husband.
That was the beginning.
Since then I have had several occasions when I can’t walk, migraine headaches, insomnia, burning pain, loss of function of my hands and face, numbness, electrical shocks, cramping, shooting pain. Currently, I am technically un-diagnosed and am floating around the system. It is awful, but I have seen and know people who have had worse. I have done numerous different therapies, medications, tests, and seven years later, I have no answers and am still in pain.
Losing some friends and family; it has made me want to create an enhanced awareness about Pain Patients.
We are treated like pariahs, criminals, junkies, nut-jobs and the like. We are misunderstood, misdiagnosed, dismissed, referred-out and judged. Pain is invisible and the human brain will delete the actual physical memory of pain. Pain is different for everyone, making it difficult to relate. What is bad for one is nothing to another.
I want to increase understanding and acceptance from the Medical Profession that we are real people, with real problems, with real pain. The Health Care System needs to be properly educated on Pain Medication, Pain Management and Treatment for pain. So that there is hope out there for us.
We need to be heard and recognized.
Thanks for building this site for all of us Painies!!
by Band Back Together | Sep 13, 2015 | Anxiety, Bacterial Infectious Diseases, Caregiver, Chronic Illness, Fear, Grief, Help For Grief And Grieving, How To Cope With A Suicide, How To Help A Friend With Chronic Illness, Infectious Diseases, Invisible Illness, Lyme Disease, Stress, Suicide, Trauma |
Click here for Part I
Everyday I feel like I am going to die.
It’s pretty difficult to sleep at night when you are afraid that you won’t wake up in the morning, leaving your 18 month old motherless. And in the *capable* hands of your husband who, when it’s his night to make dinner, relies on boxed Mac and Cheese. Without me he’d probably revert back to Kraft, leaving organic Annie’s behind.
Neurologic disorders are their own beast, I think. The symptoms are literally all in your head, and yet you feel them everywhere. My feet tingle. Sometimes I can’t stand the feeling of pants on my legs because my nerves are hyper sensitive. My hands go completely numb some nights. Just a minute ago I was pretty sure that my tongue had stopped working and that maybe I was having a crazy allergic reaction. When I touch the skin of another person, sometimes it feels like it’s burning.
I’ve been to the ER too many times this last year. At first it was chest pain, which was treated with Ativan. Turns out I have chest wall inflammation. Advil was much more helpful than the anxiety drugs, but I’m a woman so must be crazy. Then I went to a doctor for what felt like the flu in the height of the swine flu outbreak. She listened to my heart, which had become tachycardic. She thought I was having a thyroid storm. Nope. Just Lyme disease. (It would have been helpful to know it was Lyme then.)
Lyme is also extra special because it causes psychiatric changes. Remember IRENE from the Real World? Don’t you wish you were my husband? I swing between uncontrollable anger to lying on the floor thinking about death. Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn’t figure out why there were links to suicide prevention lines. I get it now.
And then there’s the memory deficits. I’ve always had a really sharp memory. My mom hates me for it. Pray that your children don’t remember every phrase you ever uttered to them! I’m also a word freak and can kick some serious Scrabble ass. But now, I have trouble remembering the word for “countertop” (yep, happened the other day). I don’t know how to spell things. And I often just stop in the middle of a conversation unsure of what we were talking about or what I was saying or what I want to say next.
My stomach hurts. My knees ache. I lose my sense of taste sometimes. I can’t sleep, and yet I’m profoundly exhausted. I get night sweats. Bright lights bother me. And low lights bother me even more. I feel jittery and can’t sit still. But I’m too tired and sore to move. And I constantly feel like I’ve just gotten off a Tilt-A-Whirl, that’s how dizzy I am.
This is my life. I don’t tell you this for sympathy. I tell you it because it’s real. And frankly it scares the shit out of me.
by Band Back Together | Sep 4, 2015 | Childhood Fears, Fear, Self-Esteem |
I am the Black Sheep, at least on one side of my family.
It’s not easy being the one who everyone seems to judge as being “bad,” when really, it’s that we are simply just not like the others. This is really the reason why you don’t feel accepted as one of them. I know this feeling. I totally get it. I am here to tell you that the most gracious thing that the Mother Goddess could do for you was to make you not be like them.
No one likes to be treated like an outcast, but when you take a step back and look at what sets you apart from everyone else, the stuff that you learn about yourself might not be so bad. You need to realize and accept that what others think of you doesn’t matter until you make it matter. Whatever they think does not have to be the truth of you.
As a kid growing up, I heard lots of ugly things about me. I was just a little kid. It makes me sad to know that there are adults on this planet who think that their word has to be gold. They use their words as a means to manipulate others to think the same way they do, without a thought to how those words will affect another person’s life. In fact, the reason that they are saying what they are is done out of fear, out of their own feelings of inadequacy.
All of us has the responsibility to create our own lives. Do not allow the opinions of others to keep you from making your life all it is supposed to be, and all that you want it to be. No one else has the power or the right to take away your ability to shine. You are who you are for a unique and special purpose. You hold the key to who you are, not someone else.
When people talk shit about you, it means they are guessing. It is easier for those kinds of people to go with what they have heard or what they assume rather than learning the real truth. When this is happening to you, it is hard to go through, and hell yes, it is hard to grow from, but you will grow from it. I Promise.
I come from a very “Born Again” family. As a little kid, I always thought I would go to hell because I was also one of those kids who conversed with the unseen world. I am Hawaiian. I am indigenous. I am a Pisces with my sun in the 8th house. What this all adds up to is that I am very weird, and for some of those very conservative people, I am evil.
I am the eldest of three children. My father, a preacher. My mother, I refer to as being “God’s Secretary.” As a child, I was freaked out when the lights were out and the house was dark and still. I knew that there were entities there with us, so I would talk to them. My parents likely believed that I was just a little kid with a great big imagination. As I got older, the things I was learning from my parents and my church did not agree with who I was. Did that give me the right to go out into the world and say horrid things about people and things that I did not understand? Not at all.
I tell my Spirit Students that through the hurt and the pain caused by the thoughtlessness of others, we become Stand Alone. I will repeat it again and again – you’re not alone …you’re Stand Alone.
The truth is that when we are at the weakest point in our lives, we are actually at our strongest.
Yup …you read that right. Think about it in terms of someone being hurt in a battle or perhaps someone being attacked by an abuser. When people who were attacked and done wrong to, they have walked through a fire of refinement. That is how people come to their own self-conjured amazingness. Though you may not see it, you never strayed from being you, meaning that in all of your you-ness, you managed to be able to remain true to you.
In remaining true to you, you have endured losses of gigantic proportion in terms of being able to trust others with your heart and soul. You have been able to walk with your head held high. Here you are, in all of your shining, fractured glory. It is the fractures which make you so very you.
It is not a bad thing to be what is known as ‘The Black Sheep.’ You are equipped to handle things beautifully, even the ugly, crappy things.
You are the black sheep, not because you are bad, but because you stand out.
You are the black sheep, not because you are weird, but because you are an original thinker.
You are the Black Sheep, because the Goddess and your Ancestors knew that of the entire herd of proverbial sheep you were born into, you stood out among them.
It is one thing to stand out, but you were meant to be Stand Alone, because really, there is no one like you.
Aloha!
