by Band Back Together | Dec 4, 2010 | Asperger's Syndrome, Autism, Childhood Bullying, Coping With Bullying, Fibromyalgia, How To Heal From Being Bullied, Parenting, Rheumatoid Arthritis |
A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.
by Band Back Together | Dec 3, 2010 | Anger, Anniversary Reactions, Breakups, Coping With Losing A Child, Grief, Help For Grief And Grieving, How To Cope With Post-Traumatic Stress Disorder, Livng Through A Miscarriage, Miscarriage, Post-Traumatic Stress Disorder, Sadness, Spotlight On Baby Loss |
Today is when our baby was due.
Today is when we would’ve met our child and become parents.
It’s hard writing those words, but even harder thinking about what they actually mean. We never knew if our baby was a boy or a girl, though we’re convinced our little one was a tiny princess. We named her, though only we know her name. I try to look at our faces all the time and imagine what she would’ve looked like. There is an emptiness in my heart knowing our family isn’t complete, that there’s someone missing.
I posed a question to people a while ago. I asked if they would consider someone a mother if their child never made it into their arms, and as would you expect, the answers were divided. I’m half in the park that “I am a mother,” and half in the “I’m not” as well. Without having her here in my arms, I feel like I don’t deserve the title of ‘mother,’ but I can’t deny she was here, even if only for a short time.
Her initials are CG, and I wish I could tell you her name, but somehow it doesn’t feel right. I’m tired of her being our secret though, and I want the world to know I should have a daughter here. I’m angry, frustrated, and hurt. I want people to know about her, I want others to miss her, I want others to care.
Today, I should be a mother, holding our little angel, breathing her in and going over all of her little features with the awe only a new mother can have.
Today is a lot harder than I thought it would be.
by Band Back Together | Dec 1, 2010 | How To Help A Parent With a Special Needs Child, Parenting, Special Needs Parenting |
I just spent two hours trying to explain to my middle child, who is 3 1/2 (and I suspect autistic), that the puzzle she insisted I get down for her did.not.exist, that hitting her sister was unacceptable, and that she needed to be quiet because other people were trying to sleep.
I spent 30 minutes in the closet, pointing to each puzzle we did have and asking, “This one? No? This one?” over and over again. We only own three puzzles, if that gives you any idea of the sheer frustration I experienced. She kept pointing and saying in her fuzzy Bitsy speech, “There! Up there! Pongo!” Pongo, for those who do not know or readily remember, is the father dog in 101 Dalmatians. We own both the original and the sequel, Patch’s London Adventure, but she did not want a movie. That much was clear as day, because every time I showed her the movie case, she screamed and shook her head no. Ooooo-kay, back to the puzzle-pointing-is-it-this-one? game.
Every time I didn’t find what she thought should be there, she got a little louder, a little more shrill.
After thirty minutes had gone by, I was sick of trying to convince her it wasn’t there, and I left, apologizing that I couldn’t find it but that we really don’t have it. I swear. This set her OFF.
She started hitting her sister in her frustration — this is a common problem with her — and we spent the next twenty minutes on a merry-go-round of, “Say sorry to Punky.” “NO!” “Bitsy, we do not hit. Say sorry.” “NO!” “Do you need to sit in time-out?” “NO!” “Then say sorry to Punky.” “NO!” “I’m counting to 5–” “NO!” “–and if I get to 5–” “NO!” “–I’ll have to put you in time-out.” “NO!” “1″ “NO!” “2″ “NO!” “3″ “NOOOOOOOOO!” “4″ “NOOOOOOOOOOOOOOOOOOOO!” “5. Okay, I’m putting you in time-out now for hitting Punky and not saying sorry.” “NOOOOOOOOOOOOOOOOOOOO!” I sat her by the front door (designated time-out spot) and she started shrieking. Not just the typical “I’m upset” screaming most children use to bloody ear drums, but the kind that evokes images of murder and torture. I’m a teeny bit surprised that our neighbors didn’t call the cops or CPS or something. Ten minutes of this while I sat there like an asshole, reminding her to be quiet because people are trying to sleep, including her baby sister.
She refused to calm down. For an hour. And before you think she couldn’t possibly go on so long, I know for a fact that this child can scream and shriek and cry and whine for four hours solid — and that’s only MY record hold-out time. I’m convinced she would have gone on longer had I not given in. But that was almost a year ago, and her tantrums — if you can even imagine this — have gotten worse.
I try redirection, and sometimes that works… but sometimes it just doesn’t, no matter how hard I try. And there are times where I don’t believe redirection is appropriate. Sometimes there just have to be consequences. Like hitting, for example. I’m not going to use, “Would you like to color, Bitsy?” when she’s smacking her sister around. That’s like I’m rewarding her for hitting. If they’re fighting over a toy and I notice she’s getting worked up, yes, coloring works as a distraction. But her safety and the safety of my other children demands a direct correction.
But Bitsy doesn’t take direction well. She screams and hits and bites and throws things, going so far as to plug her own ears so she can scream harder and louder without hurting herself. It’s like she’s trying to drown us out because reality and her idea of reality aren’t meshing, and she can’t handle it. Literally cannot handle it. Not “chooses” not to handle it, not “doesn’t want” to handle it, cannot handle it.
How do you deal with that? I’ve yet to find a way. I can’t trail her all day every day to catch every little stress-trigger and divert her from it. It’s just not feasible — I don’t even think it would be feasible for a stay-at-home parent of an only child. There are things I have to do; clean the house, wash dishes and laundry, mend clothes… And I have two other children, one of whom is only nine months old.
And you might wonder, why would I have another child when she was so time- and attention-consuming? Because 17 months ago (baby was born at eight months, not nine), she wasn’t nearly so bad. Her behavior, while problematic at times, was not constantly this way. She had her bad days, certainly, but she had lots of good days, too. I don’t know whether it was bringing another child into the house or just her own natural progression that did this to her, but I did not intentionally put myself in this position. I had no way of knowing this would happen, but it did, and now I’m stuck in it. And it isn’t just her behavior that makes my days trying.
My beautiful little girl used to eat a wide variety of food; in fact, there was very little she wouldn’t eat. Pears, the peel on an apple, cabbage, horseradish, and sauerkraut. That was it; that was her list of dislikes two years ago, and she’d been exposed to a very wide variety of foods. But now I’m lucky if she eats anything but granola bars, bologna, and fruit snacks. I’ve seen so many healthy foods she loved fall out of her diet, like broccoli, chicken breast, corn, fish, nuts, fruit of all kinds… The only real fruit that has passed her lips in months is blueberries, and I stared in amazement as she ate those.
I don’t know what to do anymore. I have to wait until after the holidays to start the ball rolling on being evaluated, and even then it is a long process. I have very few ways to cope day-to-day. I have no family, no friends nearby who can help me out or give me a break once in a while. And even if I did… who would be able to deal with her? And all three? Forget it! Their father can barely handle them, and he’s their father. He’s good with kids — he has six little brothers! — and even he throws his hands in the air and says he doesn’t know what to do anymore. I can’t even count how many mini-breakdowns I’ve had over the past few months.
And there’s no relief in sight. God help me.
by Band Back Together | Nov 30, 2010 | Cancer and Neoplasia, Coma, Grief, Help For Grief And Grieving, Hospice, Loss, Parent Loss |
t was 11 years ago today.
I sat in the middle bedroom at my Granny’s house holding his hand. His breathing was shallow and staggered. He had faded in and out of consciousness several times that evening and we had taken turns sitting with him. We knew he wasn’t in any pain and we weren’t exactly sure he even knew we were there. But we like to think he did. After a very long day and evening, and a day or two prior of much of the same, we knew the time was near.
It was decided by one of us, who exactly I can’t remember and it really doesn’t matter, that maybe we should all go in and tell him it was okay to go. We knew he was ready and it was okay. No matter how many times I say it was okay, it really wasn’t. And still isn’t. Just don’t tell my Dad that.
They tell you that people in a coma or not in a real state of consciousness can still hear you if you talk to them. I know now they are right. Either that, or God heard us and passed the message on to Dad.
It wasn’t more than a few minutes after that, although it seemed like much more, he slipped away. Hearing from us that we were okay and it was time allowed him to let go as well. It was very peaceful. It was heartbreakingly sad. It was something I would never wish on anyone else and at the same time a memory I would EVER want to trade away.
It was 11 years ago today and it still feels like yesterday.
It was 11 years ago and I still miss him terribly.
I love you, Dad.
by Band Back Together | Nov 29, 2010 | Dementia, Grandparent Loss, Grief, Help For Grief And Grieving, Hospice, Parkinson's Disease |
3 weeks ago my grandma fell and broke her neck.
3 weeks ago she was rushed to Peoria to see if they could fix her.
At 82 with severe Parkinson’s Disease, degenerative bone disease, (from which she’d lost a whole 12 inches off her height) dementia, and multiple other health problems, we didn’t know what the options were.
The surgeon suggested surgery to repair the fracture. He was hopeful that it would work. Do nothing and she could become a paraplegic if she so much as coughed too hard. Or she could live with the neck brace, which she hated, her lungs could fill up with fluid and she could develop pneumonia. In such poor health, that’s not good.
We opted for surgery; really the only option. Grandma was scared but we all told her we loved her. I told her we would go dancing after she was done as she hasn’t walked in over two years.
She smiled and held our hands, said she loved us and off she went.
Surgery went well and they were able to fix the break. That was not the major hurdle though. Even in good health, Grandma has never done well with anesthesia. Two days before her fall, the dentist didn’t even want to give her a local to fix a couple teeth as she’s allergic to Novocaine.
After surgery, she was put into a regular room and about an hour later, her vitals crashed.
She was gasping for breath. She looked so very scared. She gripped my hand as a wonderful nurse held the oxygen mask on her for close to an hour until they were able to get a bed ready in the Surgical ICU. Once she was settled in the ICU, we each took turns going to see Grandma. She was on a ventilator to help her breathe and give the swelling a chance to go down after surgery. This was against her wishes and she was miserable. She had the vent in for 3 days until it was removed. She did so well.
They observed her for a day in the Surgical ICU (SICU), then transferred her down to another room for a few days.
When she was ready, she was discharged.They didn’t send her back to her assisted living apartment, but to a skilled nursing facility with hospice. Everyone came to visit. Friends, grandchildren, family, everyone. Someone was by her side 24/7. She would talk a little, barely a whisper. Grandma looked at pictures and had us to sing to her while we sat by her side. She told us that she saw my grandpa who passed away in 1978.
She told us all of the beautiful things she was seeing and hearing. It was amazing to listen to her. She told us so many stories. She told us there would be no more pain there and no more wheelchairs. We all laughed and cried and held her hand.
On Tuesday November 16, Grandma took her last breath while my mom sang to her. My mom said it was very peaceful. Grandma wasn’t afraid like she had been in the hospital. I am so very thankful for that. I miss her, maybe more than I can ever express. My kids miss her too. They are hurting. I have given them songs that help them feel better, or so they say. I don’t know where to go from here. I don’t know how to fix their hurt, or mine.
This holiday is especially going to be hard for me.
Last year I was upset because I wouldn’t get to spend it at Grandma’s house. At least I got to spend it with her.
Now I don’t even have that.
by Band Back Together | Nov 28, 2010 | Coping With Depression, Divorce, Emotional Abuse, How To Help With Low Self-Esteem, Major Depressive Disorder, Self-Esteem, Suicide |
I was never going to write on here. I was going to comment and offer support… but I was never going to write about how I felt.
“It’ll go away later,” I’d tell myself. “There worse things out there in life than feeling down every now and then.” “Everyone gets overwhelmed this time of year.”
But then I wonder if it’s worse than that.
I’ve always been relatively smart. My elementary school wanted me to advance to 2nd grade during Kindergarten. I was in Beta Club and always enjoyed school. Then, in the 3rd grade, my parents split up.I vaguely remember an incident where my dad hit my mom. They got back together when I was in 6th grade. But, things weren’t going well.
We moved after 6th grade. My best friend had moved away a year earlier and I had a hard time making new friends in my new town. I was smart… and smart kids aren’t the cool kids. So, I dumbed myself down.
Things weren’t good at home, either. My parents were not happy and it showed. My mom had a meeting with my teachers my sophomore year to discuss my poor grades and my English teacher told her it was because I was bored with school. It was too easy for me, and I had given up. I had driven myself to the point that I actually told my mother that I wanted to kill myself. To this day, I cannot guarantee that it was an empty threat.
After we moved, everything about me changed. I became my mother… she gets upset too easily. She’s depressed. As far as I know, she’s not gotten help for it. She’s always telling me to stop getting “into tizzies.”
I’ve been in some bad relationships where I was used and cheated on and emotionally abused. I was called a “butterface” (everything is okay about her, but her face), ugly, and fat. I think the worst thing people made fun of me for was my nose. It’s on the larger side and now every time I look at myself in the mirror all I see is that damn nose. How it makes me far from perfect.
I’m engaged now and I love my fiance with all of my heart and I know he loves me, too…but there’s this voice that comes out every now and then and eats away at me. It says that he deserves someone beautiful and he’s going to find her and leave me. I trust that he loves me and won’t leave me… but that voice in my head won’t shut up.
The best way to describe how I feel is when you go to a store like Best Buy. And you go to the back of the store where all the TVs are, and you put each TV on a different channel and close your eyes. All those voices, all the things running through your mind – and I can’t make it stop.
I can’t even make simple decisions like what I want to eat for dinner. If I go to make a speech or presentation in class, I get so shaky I can barely stand up, let alone speak. In some classes I can’t understand the material, so I cry, and when Tony asks me what I don’t understand so he can help, all I can muster is, “I just don’t understand.”
What is the most important thing I don’t understand? Why I went from a smart, outgoing kid to someone who wants to hide in their room with the lights off.
And, then there are days when I feel great and nothing is wrong and I just say to myself, “it went away like usual. See? Everything is better. Sometimes people just get sad.”
Until that voice in the back of my head finds those remotes again
