I made a BIG decision. It took a lot of thinking. A whole shit ton of inner dialogue to work through before I could come out on the other side. It felt like a weight had been lifted.
Then the family members who don't agree with my decision started in with the phone calls and the hateful comments on social media. There is one relative in particular who is a bully . This isn't a big surprise. I knew it would happen. I didn't prepare myself for how it would feel.
Doubt has crept up now. Did I make the right choice? I know it isn't what some of them want. I understand why. I feel though that I made the right choice for myself and the kids.
When she said, in so many words, that I don't miss my mamaw, and I never loved her, my heart broke. Mamaw was my best friend.
Mamaw is gone now.
I have a right to miss her so much it actually hurts.
I didn't do what you would have done.
But I can still feel Mamaw all around me, and she isn't reigning fire down on me.
Saturday, November 28, 2015
Tuesday, November 17, 2015
Thursday, November 12, 2015
Tuesday, October 27, 2015
Dolls, boys, and a momma who Believes in her kids
Noah has been wanting his own "boy" doll since he was 5 years old. I feel bad it has taken me 3 years to find him one. To actually follow through. But. Hey! I did it. Although my options were next to NONE.
Either I order an 18 inch girl doll and cut her hair and get her some new clothes. .. or... or what? It took me some serious searching to find a website that makes 18 inch boy dolls. I thought it was kind of neat that the dolls are created to help others better understand disabilities. How fitting, you know, in our family? I was a bit disappointed though. They are not as cute as I had hoped. There were not a lot of skin/eye/hair combinations to choose from. I did decide on one with blonde hair and blue eyes though. Yes, I could have MADE him a doll by altering a used American Girl doll or Madame Alexander doll, but I REALLY want him to receive his special doll all in its packaging, in a cardboard and plastic windowed box. Like the gazillion dolls that Emma has received. There is something about unwrapping a new doll and admiring it through the box, then tearing the box open to free your new friend!
Some *assholes* might think or say, "Why the hell would you want your boy to play with a doll?"
Because he always has. Now, this Christmas, he can have one of his own. Not just another stuffed animal or rag doll, but a doll like his sister's! And it will look like him! A little buddy he can cart around to build Lego houses with, to sit next to him while he fights off Creepers in the endless game of Minecraft, a pal to tuck in at night and read to.
Yeah, I got his new doll a bunk bed too and some cute sheets. :-)
I can't wait for Christmas ;-)
Either I order an 18 inch girl doll and cut her hair and get her some new clothes. .. or... or what? It took me some serious searching to find a website that makes 18 inch boy dolls. I thought it was kind of neat that the dolls are created to help others better understand disabilities. How fitting, you know, in our family? I was a bit disappointed though. They are not as cute as I had hoped. There were not a lot of skin/eye/hair combinations to choose from. I did decide on one with blonde hair and blue eyes though. Yes, I could have MADE him a doll by altering a used American Girl doll or Madame Alexander doll, but I REALLY want him to receive his special doll all in its packaging, in a cardboard and plastic windowed box. Like the gazillion dolls that Emma has received. There is something about unwrapping a new doll and admiring it through the box, then tearing the box open to free your new friend!
Some *assholes* might think or say, "Why the hell would you want your boy to play with a doll?"
Because he always has. Now, this Christmas, he can have one of his own. Not just another stuffed animal or rag doll, but a doll like his sister's! And it will look like him! A little buddy he can cart around to build Lego houses with, to sit next to him while he fights off Creepers in the endless game of Minecraft, a pal to tuck in at night and read to.
Yeah, I got his new doll a bunk bed too and some cute sheets. :-)
I can't wait for Christmas ;-)
Monday, October 26, 2015
all the boxes stored in her head
Music. I CONSTANTLY have song lyrics in my head. Songs are my heartbeat, the center of my soul. I blurt out lyrics in response to what a person is saying to me, if their words strike a chord, if you will, with some song I have stored away in that wacky file box in my mind. Envision it if you would-- the hallways in my head are pristine. Your heels click, click, click on the tile. Aren't you wearing heels? Shit. Well, you are. I say you are. After all, you're in my head. The lights are fluorescent. There are so many doors though. You can hear a child's laughter behind one. A grown woman sobbing behind another. You dare to open a different door. It's a bit dark in here, so you flip the switch. Stacks and stacks of file boxes. A few boxes look as if they'll topple at any moment.You open the box closest to you, and you are amazed. What you thought would be yellowed papers, the corners curling, receipts?, a life's worth of insurance documents?, isn't paper at all. Music, so much music. You look closer at the label on the side of the box:late 80s it reads. My goodness! She's stored every single song, commercial jingle, television show theme, that she's ever heard. Impressive, isn't it?
Tuesday, September 29, 2015
poems in the rain
"rainy afternoon leaving the doctor's office"
under an umbrella
they walked
daughter
mother
mother stops. says
"wait. ive got a poem in my head dear girl. let me think it."
daughter asks
"does it go like this?
'we are hungry. where is food?'"
mother laughs
under an umbrella
they walked
daughter
mother
mother stops. says
"wait. ive got a poem in my head dear girl. let me think it."
daughter asks
"does it go like this?
'we are hungry. where is food?'"
mother laughs
walking through her meltdown #autism #sensory overload #spoons
Walking through a meltdown (one kind):
If I had my phone I'd make a meme! But imagine you're in a body whose brain is wired a bit differently. Imagine you've been studying, and practicing, and being told for a week how quiet you need to be on a trip. It's somewhere you really really want to go. You've just discovered it's definitely a new interest. You are so so so excited! You cry a little the morning of because you are confused about the itinerary. You thought a judge would serve you lunch and you would stay all day! Mom shows you the permission slip that states that lunch is at school. You are sad but seem to recover. You get there, and everything goes great! You've really held it together SINCE 6AM! AND you haven't been feeling so great but don't tell your mom, or you tell someone at school but mom doesn't know right away. So, after lunchtime, you are DONE. you've been so well behaved. And this took every little bit of energy you have. You saved up your "spoons," you've been collecting them for days! Oh no. They're all gone! You're going to do the only thing you know how to do: you're going to shout! You're going to laugh like nothing they've ever heard before! You're going to flail! And hit! Someone rescues you with that tight compression hug you need. You wish you could say Thank You. It feels so good. And Thank You for getting me to the therapy swing. You don't even remember walking here. You have calmed. Your senses have restored. But, oh, you are so tired. Can they even imagine how tired? You come home. Mom tries to make you laugh. You do five math problems for her. Is that enough? You just put your head down. Oh, thank God, she is closing the curtains and covering me up! You don't care that it is only 3:30 in the afternoon. You sleep all night, into the morning when mom comes in at 6. You try to get ready for school, but you're just feeling off. You tell her you feel not so good. Oh! She gets it. Good. #autism
If I had my phone I'd make a meme! But imagine you're in a body whose brain is wired a bit differently. Imagine you've been studying, and practicing, and being told for a week how quiet you need to be on a trip. It's somewhere you really really want to go. You've just discovered it's definitely a new interest. You are so so so excited! You cry a little the morning of because you are confused about the itinerary. You thought a judge would serve you lunch and you would stay all day! Mom shows you the permission slip that states that lunch is at school. You are sad but seem to recover. You get there, and everything goes great! You've really held it together SINCE 6AM! AND you haven't been feeling so great but don't tell your mom, or you tell someone at school but mom doesn't know right away. So, after lunchtime, you are DONE. you've been so well behaved. And this took every little bit of energy you have. You saved up your "spoons," you've been collecting them for days! Oh no. They're all gone! You're going to do the only thing you know how to do: you're going to shout! You're going to laugh like nothing they've ever heard before! You're going to flail! And hit! Someone rescues you with that tight compression hug you need. You wish you could say Thank You. It feels so good. And Thank You for getting me to the therapy swing. You don't even remember walking here. You have calmed. Your senses have restored. But, oh, you are so tired. Can they even imagine how tired? You come home. Mom tries to make you laugh. You do five math problems for her. Is that enough? You just put your head down. Oh, thank God, she is closing the curtains and covering me up! You don't care that it is only 3:30 in the afternoon. You sleep all night, into the morning when mom comes in at 6. You try to get ready for school, but you're just feeling off. You tell her you feel not so good. Oh! She gets it. Good. #autism
Sunday, August 9, 2015
Oh, we heard you.
The plan was to take the kids to the Splash Park in town. The one that just so happens to be RIGHT next to the community pool. I went over the plan several times with both of my kids, but especially with Emma who has autism. She was a day away from turning 11 years old. She understood. Or so I thought.
She was so excited on the way there. Ecstatic really-- bubbly and happy. As soon as we arrived and sat down at an outdoor table to apply sunscreen,that all changed. The crying began. Through tears, she demanded we go to the pool. Emma sobbed. Asked, pleaded, whined. She screamed. She put her head on my shoulder. She never does that. I put my arm around her and quietly spoke in her ear, trying to calm her. I repeated our "plan" and explained again how we couldn't go to the pool that day. And I prayed that I could get her through this meltdown without us having to leave.
There was an elderly woman sitting on the opposite side at the table. When we got there to the park, I had asked if there was room for us. She said we could sit there. While Emma was screaming, our backs were to this woman, but I could hear her sighing. A LOT. Then I heard her speak to another woman who had just sat down, saying she wished all that crying would stop and she didn't want to hear it anymore. She said it a few times. I turned my head so I could make eye contact, and I asked her to please stop. I explained that Emma has autism and that she was upset. The older woman told Emma there was no good reason to cry and to look at all those "big kids" out there not throwing fits. Emma's yelling got louder then. I turned again to the woman and told her to stop-- that she was not helping and I can take care of my daughter. The woman CONTINUED to talk AT us, while I was whispering to Emma and trying to diffuse the situation. She went on and on about how my daughter needed to be a "big girl" and listen to her mother. I had had enough, so I turned again and not - so - politely hissed, "Zip it!" I made the motion of zipping my lips. That finally did it. No more commentary.
My daughter wasn't being a brat. She was having a lot of trouble with reasoning. In her mind she NEEDED to go on the diving board, and there was no other alternative. The plan? What plan? I knew how to handle it.
Her meltdown subsided a bit later and she was able to have some fun with her younger brother and the little girl I babysit. One kind woman struck up a conversation with me. I was grateful for that. For her making me feel like we weren't lepers. All other eyes were trying not to stare.
It had been a long time since we had run into a person being openly rude, especially one so vocal. I understand the woman was of an "older" generation and a certain mindset of how children should behave. But the comments were unnecessary. Her opinions were best kept to herself. She did not know us. I told her to STOP several times.
That day still plays in my head. And it's hard for me to understand.
Strangers, if you see us out and about and Emma is having a meltdown, 1. Ask if you can help ME. I will be appreciative. 2. But if I say No Thank You, please try to understand and be respectful of that. 3. Don't stare. 4. Don't talk about us. We can hear you. 5. Don't judge. She is not a brat. And I'm not a bad mother.
Thank you.
She was so excited on the way there. Ecstatic really-- bubbly and happy. As soon as we arrived and sat down at an outdoor table to apply sunscreen,that all changed. The crying began. Through tears, she demanded we go to the pool. Emma sobbed. Asked, pleaded, whined. She screamed. She put her head on my shoulder. She never does that. I put my arm around her and quietly spoke in her ear, trying to calm her. I repeated our "plan" and explained again how we couldn't go to the pool that day. And I prayed that I could get her through this meltdown without us having to leave.
There was an elderly woman sitting on the opposite side at the table. When we got there to the park, I had asked if there was room for us. She said we could sit there. While Emma was screaming, our backs were to this woman, but I could hear her sighing. A LOT. Then I heard her speak to another woman who had just sat down, saying she wished all that crying would stop and she didn't want to hear it anymore. She said it a few times. I turned my head so I could make eye contact, and I asked her to please stop. I explained that Emma has autism and that she was upset. The older woman told Emma there was no good reason to cry and to look at all those "big kids" out there not throwing fits. Emma's yelling got louder then. I turned again to the woman and told her to stop-- that she was not helping and I can take care of my daughter. The woman CONTINUED to talk AT us, while I was whispering to Emma and trying to diffuse the situation. She went on and on about how my daughter needed to be a "big girl" and listen to her mother. I had had enough, so I turned again and not - so - politely hissed, "Zip it!" I made the motion of zipping my lips. That finally did it. No more commentary.
My daughter wasn't being a brat. She was having a lot of trouble with reasoning. In her mind she NEEDED to go on the diving board, and there was no other alternative. The plan? What plan? I knew how to handle it.
Her meltdown subsided a bit later and she was able to have some fun with her younger brother and the little girl I babysit. One kind woman struck up a conversation with me. I was grateful for that. For her making me feel like we weren't lepers. All other eyes were trying not to stare.
It had been a long time since we had run into a person being openly rude, especially one so vocal. I understand the woman was of an "older" generation and a certain mindset of how children should behave. But the comments were unnecessary. Her opinions were best kept to herself. She did not know us. I told her to STOP several times.
That day still plays in my head. And it's hard for me to understand.
Strangers, if you see us out and about and Emma is having a meltdown, 1. Ask if you can help ME. I will be appreciative. 2. But if I say No Thank You, please try to understand and be respectful of that. 3. Don't stare. 4. Don't talk about us. We can hear you. 5. Don't judge. She is not a brat. And I'm not a bad mother.
Thank you.
Saturday, June 27, 2015
do you hear what i hear?
Just a little insight into Sensory Processing Disorder and Auditory Processing Disorder, common occurrences with autism: earlier today Emma was in the living room, Noah in his room, and I was one room over in the laundry room. Noah said to me, in a voice just above normal, "I love you!" About a full 60 seconds Emma started screaming. She was panicked. She yelled, "Who's talking in my ear?! Who said 'I love you' in my ear?!" I reassured her it was Noah who had said that to me.
I wanted to give you an understanding of how slowly she processes sounds at times and also how her brain is not telling her where the sound is coming from and is making it louder and extremely close to her. It becomes easier to see how one might feel scared and even a bit crazy if this is how you 'hear.'
I wanted to give you an understanding of how slowly she processes sounds at times and also how her brain is not telling her where the sound is coming from and is making it louder and extremely close to her. It becomes easier to see how one might feel scared and even a bit crazy if this is how you 'hear.'
Monday, June 22, 2015
learning to live without my Charlie
The yard was calling to me. I mowed, weeded, and mulched. Then sat down to watch four hummingbirds converge at the feeder. Someone was letting off fireworks in the east and the lightning bugs were out. I ignored my pounding allergy headache and enjoyed the slight evening breeze. With every step I took outside my heart ached. Charlie was always following me-- back and forth, back and forth-- as I made rows with the mower. I miss his green Grinch paws so much. I wished he was lying beside me at the patio out back as I rested... but I couldn't bear to sit out there. So I sat at the front of the house and was still, hoping for restoration of my heart and peace in my mind.
Tuesday, June 16, 2015
morphing
As we segway into adolescence -- I say "we" because Hello! I'm on this ride with my daughter for sure!-- I watch as her meltdowns morph into something a little different.
She is nervous about walking up to her classmates when we see them at the video store or grocery. This is something new. Her stuttering increases and she blurts out random and strange (untrue?) things to them as a greeting. i.e., "Hi, ______. How is your summer? I've been itchy a lot lately," as she scratches at her scalp and rubs her arms. They're going to think she has fleas or something! Oh dear.
She's never really liked being in the grocery store for long, but now her agitation quickly shifts to a manic state. She clomps around the store at high speeds, spouting off brand names read from labels and laughing hysterically.
More time is spent in her room with the door closed. Shutting her little brother out.
She has become more interested in hygiene. I still have to turn the shower on for her. She can now wash her hair and body! But I do the rinsing of the hair or there will be globs of shampoo left in it.
I mourn the little girl I used to have. And I marvel at this new blossoming creature. In a way, I get to keep them both. As she matures, her love of "baby" things seems to remain, and even has become more so as the part of her brain that does pretend play has grown and is being used more. I've never seen her so interested in her baby dolls as I have lately. She now has a stroller and a carseat and a highchair and she plays with them regularly.
She's reading four chapter books at once! She's into paranormal shows and reading up on trivia about the universe. She was so sad when she saw that the video store no longer carries the toddler cartoon that she used to watch repeatedly. And she's forgotten what it's title is ( also something new -- because the girl doesn't forget things like that!) so I can't look it up on Amazon. Maybe it will come to my tired old brain soon.
I adore my girl who drinks iced mochas from crazy straw cups, who knows everything there is to know about the 7 Super Girls on YouTube, and who believes with all her heart that mermaids, LochNess, and BigFoot exist. Even as she gets a little older, there is still so much Magic in Emma's world.
She is nervous about walking up to her classmates when we see them at the video store or grocery. This is something new. Her stuttering increases and she blurts out random and strange (untrue?) things to them as a greeting. i.e., "Hi, ______. How is your summer? I've been itchy a lot lately," as she scratches at her scalp and rubs her arms. They're going to think she has fleas or something! Oh dear.
She's never really liked being in the grocery store for long, but now her agitation quickly shifts to a manic state. She clomps around the store at high speeds, spouting off brand names read from labels and laughing hysterically.
More time is spent in her room with the door closed. Shutting her little brother out.
She has become more interested in hygiene. I still have to turn the shower on for her. She can now wash her hair and body! But I do the rinsing of the hair or there will be globs of shampoo left in it.
I mourn the little girl I used to have. And I marvel at this new blossoming creature. In a way, I get to keep them both. As she matures, her love of "baby" things seems to remain, and even has become more so as the part of her brain that does pretend play has grown and is being used more. I've never seen her so interested in her baby dolls as I have lately. She now has a stroller and a carseat and a highchair and she plays with them regularly.
She's reading four chapter books at once! She's into paranormal shows and reading up on trivia about the universe. She was so sad when she saw that the video store no longer carries the toddler cartoon that she used to watch repeatedly. And she's forgotten what it's title is ( also something new -- because the girl doesn't forget things like that!) so I can't look it up on Amazon. Maybe it will come to my tired old brain soon.
I adore my girl who drinks iced mochas from crazy straw cups, who knows everything there is to know about the 7 Super Girls on YouTube, and who believes with all her heart that mermaids, LochNess, and BigFoot exist. Even as she gets a little older, there is still so much Magic in Emma's world.
Saturday, June 13, 2015
livin' on the edge
Going into town later at night than usual to get free rentals with the kids and their report cards and getting dog food at Kroger when Emma is teetering on manic and/or breakdown when we get there = walking the edge. (I live dangerously.) Coming home and hearing her squeal and clap her hands and do that funny excited laugh she does when the AdventureTime DVD lights up on the screen = priceless.
nite nite, Emma
As soon as summer vacation was here Emma was determined to stay up late every night! I don't really mind. But I have a cut-off point. After midnight is just too late. She's only almost eleven. Well, the nights were getting later and later. And she -- has been getting sneaky--getting up after I've tucked her in. Getting out the Kindle or Ipad. I haven't felt well for a couple of days. Last night I slept hard until about 7:30 when I needed to get up and pee. She was awake! She hadn't gone to sleep! She was watching videos on YouTube! Good lord! Tonight the Kindle was taken away at 9:00. Oh, there was screaming. crying. it was awful. but she finally read a book like I had suggested, then crawled into bed. She didn't fall asleep right away. I kept checking. At midnight I went in again. She was staring at the ceiling, doing something with her hands. I could tell she was drifting off into her world. I asked a few times if she wanted the light off. No answer. I turned it off. She rolled over and closed her eyes. I kissed and hugged her goodnight. Told her I love her. No answer, which isn't unusual. I think she's asleep now.
i'll be honest
So I'm lying here, having many thoughts while on this drug-laced cough syrup. wink emoticon ... I keep thinking about yesterday at the library when a little girl came up to Emma and asked her if she wanted to play with her. Emma thought about it, didn't answer immediately. Sometimes kids will just walk away or roll their eyes when Emma doesn't answer. But this girl waited. Patiently. Emma said, "Yes. I would. ... My name is Emma." The girl told her her name. Emma said, "and I have autism." She was proud when declaring that. I chuckled a little to myself. I had tears in my eyes as they went off to play dress up in the theatre corner. They played for quite a while. I'll be honest, it was a relief to see that this other girl did not see my Emma as 'weird.' It happens a lot. And it shouldn't matter, yeah, what others think. But as a mother, I want my children to be liked and have friends. It's just how it is. I am thankful for other parents who have raised their children to be kind.
Monday, June 8, 2015
catching up
I could complain and be exasperated that Emma stays up late in the summer. But why? It's summer! Last night I went to check on her. It was very late. She was tucking in all of her baby dolls. I helped her. There are 3 doll beds on the floor and more babies tucked in with her. She let me lie next to her (until I snored too loud.) She even let me hold her new baby and burrito wrap it like a newborn. Yes, we're talking about a sweet girl who is almost 11. And it brings tears to my eyes because we didn't have these moments at age 3, 4, 5, or even 6. We have them now. And I cherish each one. She may be a super smart Honor Roll girl, but she's still getting caught up on the pretend play. I love it! It melts me. <3
#autism #PretendPlay
#autism #PretendPlay
an open letter to my daughter
An open letter to my daughter:
Dear Emma,
Some kids turn into adults still trying to fit in. Trying to figure out who they are. Never being true to themselves. But not you. You already know. You've known. Since day one.
I admire you. The way you learn. It is all your own. Since the week you spoke 55 words not long after the neurologist said you were delayed because you had a vocabulary of 5 words. And the way you do column math in your head now like it's nothing.
I am in awe of your dancing. You will dance anywhere and everywhere. Sometimes I have to remind you that it isn't always appropriate and it might make strangers uncomfortable. *not everyone is begging for you to perform a live show just for them. wink emoticon * But other times, I think, 'eh. Look at her. It's like I can see the colors of her swirling around her as she twirls and jigs and booty-shakes. Go, baby girl, go. smile emoticon '
Your laughter is infectious. It catches on and makes people smile. It warms my heart. I know which laugh means what, and when you've had enough-- when it's time to shut things down. I know when you need to decompress.
Your fashion sense is the best. You Own your look. You always have. If I could slow down time and keep you in your Capri pants, ruffle skirts, and glitter rhinestone butterfly/cat/panda 3/4 sleeve shirts, I certainly would. So I could hold onto these years a little longer.
Your confidence can't be shaken. What I would give for that kind of attitude!
You are loyal. Compassionate. Knowledgeable. A leader. A trend-setter.
I'm the lucky one. I got YOU. A daughter that I look up to.
You're going to go far. You're going to make things happen. I don't doubt it one bit.
Love,
Mom <3
#autism #love
Sunday, May 3, 2015
discouraged
feeling discouraged. this PCOS thing is bullshit. I'm usually so positive. I feel like I am falling apart though.
my weight just keeps packing on. I exercise DAILY. if I take a day off I regret it. if I walk too far or do too much I regret that too. I can't seem to win. my body punishes me almost daily now. I am so swollen. my belly is hanging down. my skin feels so thick. the diuretic makes my body BURN LIKE FIRE if I'm in the sun and I get a terrible headache. the Metformin makes my already gallbladder-less body shit out about 4 -6 times a day. I drink so much water. I pee constantly. this fat body is NOT MINE. what has happened????? I am so miserable. my kids have both asked me in the past week (my son, just tonight) why I am so fat. I am crying right now. I feel so ALONE. I want my body back. I want my life back. I want to run like I used to and not finish the miles with a face swollen so huge and puffy.
my family doctor hasn't returned my call about getting a referral to an endocrinologist. I am going to call the insurance company tomorrow and see if I even HAVE to have a referral. please, dear everything in the bright blue sky, my fingers are crossed that I don't need a referral and that I can find a specialist who can actually help me.
I hide all the sadness I feel from my family and friends. I've told them about this.. about how my symptoms are worsening. I don't think anyone really understands though. I can't blame them one bit. before I knew I had it (or it actually became a problem), I wouldn't have understood either. I am no whiner. no victim. I'm a fighter. I need a good physician to fight the fight with me. ive tried about everything I can find online to manage the symptoms myself -- nothing works for longer than a couple of months.
the weight. it comes on in the double digits, almost overnight. disappears for a while. then comes right back. I am not myself. I am embarrassed. and I'm afraid my kids are going to be embarrassed of me.
I want ME back.
I want to be able to work out hard and feel the results like I once did. now I just feel even worse. my body is working against me. I won't quit working out. I love it. I need it.
tags: #PCOS #polycysticovariansyndrome
my weight just keeps packing on. I exercise DAILY. if I take a day off I regret it. if I walk too far or do too much I regret that too. I can't seem to win. my body punishes me almost daily now. I am so swollen. my belly is hanging down. my skin feels so thick. the diuretic makes my body BURN LIKE FIRE if I'm in the sun and I get a terrible headache. the Metformin makes my already gallbladder-less body shit out about 4 -6 times a day. I drink so much water. I pee constantly. this fat body is NOT MINE. what has happened????? I am so miserable. my kids have both asked me in the past week (my son, just tonight) why I am so fat. I am crying right now. I feel so ALONE. I want my body back. I want my life back. I want to run like I used to and not finish the miles with a face swollen so huge and puffy.
my family doctor hasn't returned my call about getting a referral to an endocrinologist. I am going to call the insurance company tomorrow and see if I even HAVE to have a referral. please, dear everything in the bright blue sky, my fingers are crossed that I don't need a referral and that I can find a specialist who can actually help me.
I hide all the sadness I feel from my family and friends. I've told them about this.. about how my symptoms are worsening. I don't think anyone really understands though. I can't blame them one bit. before I knew I had it (or it actually became a problem), I wouldn't have understood either. I am no whiner. no victim. I'm a fighter. I need a good physician to fight the fight with me. ive tried about everything I can find online to manage the symptoms myself -- nothing works for longer than a couple of months.
the weight. it comes on in the double digits, almost overnight. disappears for a while. then comes right back. I am not myself. I am embarrassed. and I'm afraid my kids are going to be embarrassed of me.
I want ME back.
I want to be able to work out hard and feel the results like I once did. now I just feel even worse. my body is working against me. I won't quit working out. I love it. I need it.
tags: #PCOS #polycysticovariansyndrome
Tuesday, April 28, 2015
Autism at our house
As April comes to an end, I think on how it has become Autism Awareness month. I see all the memes and taglines, and even the tagline 'Acceptance not Awareness.' I think both are important. It seems that a number of people are now "aware" of autism. But it isn't something that is always accepted -- by outsiders. I use the term 'outsiders' because sometimes this autism thing puts us families and therapists in a little group, or club, and only we know the ins and outs, the rules...
I post on Facebook and I blog about our lives, our trials, misfortunes, our joys and our triumphs. All in hopes that someone will be reading and will connect with us. I want the 'outsiders' to feel a little closer to us, to not feel so out of our loop. I want people to understand our struggles and to share in our victories, small and gigantic. It makes my heart happy when someone comes up to me and says, "I read your post. It really helped me understand..."
Autism and Emma's lifelong delays have varied throughout the years. We were told so many conflicting things when she was an infant and toddler. I stopped listening to "experts" and dove head first into books and the internet. I learned how to make social stories, flash cards, replace chewing kitty litter with an apple instead, and on and on... until I found a KNOWLEDGEABLE occupational therapist and then a speech language pathologist that helped us on our journey. Then there were more therapists and pathologists and teachers and counselors. Many of these people are more than just professionals to me -- they have become like family.
I am definitely one of those moms (and dads) who cringe when we hear someone say, "God chose you because you are special/strong/blessed, etc. ..." I want to kind of scream when I hear that. I'll keep religion out of it. But really, no. So many horrible, awful, abusive, neglectful people give birth to children who have disabilities. Who chose them? Who sent those children to them? So, ugh, no. I just happen to be someone who loves my children a lot and would never hurt them. I'm pretty average, but I go above and beyond when necessary to do for my kids what needs to be done. It's about that simple.
At our house, in our little world, autism isn't puzzles pieces and primary colors, nor is it Autism Walks or t-shirts. I have a car magnet--that's about as Loud as we get. :) We have formed a pretty tight community with friends and school employees, and I think we all do a wonderful job of advocating for Emma and teaching her how to advocate for herself. Autism is laughter. Tears. Screaming. Jumping for joy. Dancing. Singing. Kicking all the stuffed animals off the bed. Lying on the floor refusing to move. Learning to tell jokes. Deciding that she can wash her hair all by herself. Three days in a row of being kissed, for the first time in years. Telling her I love her and getting no response. Taking deep breaths. Listening to her tell me the same things she told me yesterday and the day before and the day before that. Teaching her how to apply eye shadow the right way. Watching movies together (and her asking me questions throughout the whole movie :-) .) Autism is praising her little brother for being patient with her, when he would rather yell at her. Autism is a lot of explaining. Repetition. Understanding. Compassion. Empathy. Love.
I post on Facebook and I blog about our lives, our trials, misfortunes, our joys and our triumphs. All in hopes that someone will be reading and will connect with us. I want the 'outsiders' to feel a little closer to us, to not feel so out of our loop. I want people to understand our struggles and to share in our victories, small and gigantic. It makes my heart happy when someone comes up to me and says, "I read your post. It really helped me understand..."
Autism and Emma's lifelong delays have varied throughout the years. We were told so many conflicting things when she was an infant and toddler. I stopped listening to "experts" and dove head first into books and the internet. I learned how to make social stories, flash cards, replace chewing kitty litter with an apple instead, and on and on... until I found a KNOWLEDGEABLE occupational therapist and then a speech language pathologist that helped us on our journey. Then there were more therapists and pathologists and teachers and counselors. Many of these people are more than just professionals to me -- they have become like family.
I am definitely one of those moms (and dads) who cringe when we hear someone say, "God chose you because you are special/strong/blessed, etc. ..." I want to kind of scream when I hear that. I'll keep religion out of it. But really, no. So many horrible, awful, abusive, neglectful people give birth to children who have disabilities. Who chose them? Who sent those children to them? So, ugh, no. I just happen to be someone who loves my children a lot and would never hurt them. I'm pretty average, but I go above and beyond when necessary to do for my kids what needs to be done. It's about that simple.
At our house, in our little world, autism isn't puzzles pieces and primary colors, nor is it Autism Walks or t-shirts. I have a car magnet--that's about as Loud as we get. :) We have formed a pretty tight community with friends and school employees, and I think we all do a wonderful job of advocating for Emma and teaching her how to advocate for herself. Autism is laughter. Tears. Screaming. Jumping for joy. Dancing. Singing. Kicking all the stuffed animals off the bed. Lying on the floor refusing to move. Learning to tell jokes. Deciding that she can wash her hair all by herself. Three days in a row of being kissed, for the first time in years. Telling her I love her and getting no response. Taking deep breaths. Listening to her tell me the same things she told me yesterday and the day before and the day before that. Teaching her how to apply eye shadow the right way. Watching movies together (and her asking me questions throughout the whole movie :-) .) Autism is praising her little brother for being patient with her, when he would rather yell at her. Autism is a lot of explaining. Repetition. Understanding. Compassion. Empathy. Love.
Thursday, April 2, 2015
you gotta wear shades *Autism post*
We rock Autism in our house! It is our life. Lives. I am dedicated to advocating for Emma and teaching her to advocate for herself. I think that most people in this day and age are AWARE of Autism, but not everyone actually understands what it is. It is a SPECTRUM disorder, affecting each individual differently, with some common denominators. I will post facts on it at a different time, as it is too early and I'm not super awake yet. :-) ... Acceptance is what we strive for, for all people with disabilities to be treated as human beings. ... I am eternally grateful for angels that are placed in our path to help us along the way. <3 I have met great people and have made amazing friends on this journey. Emma has too. I think we are extremely fortunate to be where we are at, at this amazing school, in a kind community, surrounded by friends who just GET it. ... Autism is a part of Emma-- it isn't WHO she is. Everyone is born with a personality. Hers just happens to Shine so bright you need shades. ;-) Thank you all for reading my posts and not getting sick of them. My goal is to share pieces of our life with others so there is a greater understanding of what Autism is for many. Writing is also therapy for me, and I feel incomplete if I don't get my thoughts down! :-)#autism
Tuesday, March 31, 2015
letter to our attorney, in regards to the denial letter we received from SSI for Emma
I know that our correspondence is all "business." But I wanted to take a few minutes to say a few things. i dug out the original denial letter from Social Security. I got mad when I reread the part where it says Emma doesn't qualify because she isn't in "pain." That doesn't even make any sense! Since when does a person have to be in pain to have a disability?? And they don't know Emma. They don't know that some noises hurt her and she shuts down. They don't know that she is almost 11 and still can't remember to close her eyes when I am rinsing the shampoo out of her eyes. Or that she doesn't process that the handle in the shower is hot one way and cold the other. I have to regulate the water temperature for her. They don't know that when her little brother was using the potty, Emma couldn't begin to think of what she needed to do when SHE too needed to use the bathroom. So she stood naked in the living room and screamed and peed all over the floor. They don't know that she doubles over in pain because she hasn't had a bowel movement in 4 days, despite taking Miralax and 2 stool softeners ( I give her 2 now) every day. And that it costs me gas money that I don't have, in an old car, driving an hour to a specialist to see what kind of help she needs-- what else can I do to help her go to the bathroom. They don't know that some mornings her "switch" just doesn't turn on right away and I have to dress her and help her hold her spoon until her brain " turns on." They don't know that my girl is sweet as can be, but rarely hugs or kisses me, but she has kissed me on the lips two days in a row and I have cried because I'm completely over the moon. They don't know.
Thanks for reading. :-)
Thanks for reading. :-)
Monday, March 16, 2015
i don't owe an explanation, but, here, let me give you one
I am incredibly hard on myself. And I thank my mother for instilling guilt in me, so that when I am not well or I say no to someone I feel really really really bad. Not good enough.
Examples: 1. when I didn't feel well and I knew I needed to sleep, I turned down a substitute job one day. I hated myself that day. 2. I feel guilt and am convinced that others look down on me for not working a full-time job outside of home. Even though this is where I need to be. My kids, Emma in particular, need me. I worked outside of the home for over two years after the divorce. It was hell on all of us. Emma had frequent meltdowns. Noah lashed out. I had panic attacks. I don't have family and friends that are able to help with child care. ...
... this brings me to this question: why do I feel the need to explain myself? I don't owe anyone an explanation. Why do I do this to myself? I beat myself up. My depression deepens. Sunshine and running are the only things that help.
I work hard here at home. With my child care. With keeping my house looking nice. I work hard at the schools when I substitute. I am here when I am needed. To take my children to the doctors ( like today.) To be here so I can go down to the school if Emma needs me. To be here to Emma's morning routine and to deal with her afternoon lows. ... but there I go explaining myself again.
I feel inadequate when I don't make enough money to pay for the things my kids need. I usually do well, we get by...sometimes there is money left over. Sometimes there is not enough to stretch. And I feel like an incredible loser for not taking a full-time job. I remind myself WHY I did not. Why I am here. And that my kids are so happy with me here. I know what works for us. And I keep trying to make it work.#singlemom #autism
Examples: 1. when I didn't feel well and I knew I needed to sleep, I turned down a substitute job one day. I hated myself that day. 2. I feel guilt and am convinced that others look down on me for not working a full-time job outside of home. Even though this is where I need to be. My kids, Emma in particular, need me. I worked outside of the home for over two years after the divorce. It was hell on all of us. Emma had frequent meltdowns. Noah lashed out. I had panic attacks. I don't have family and friends that are able to help with child care. ...
... this brings me to this question: why do I feel the need to explain myself? I don't owe anyone an explanation. Why do I do this to myself? I beat myself up. My depression deepens. Sunshine and running are the only things that help.
I work hard here at home. With my child care. With keeping my house looking nice. I work hard at the schools when I substitute. I am here when I am needed. To take my children to the doctors ( like today.) To be here so I can go down to the school if Emma needs me. To be here to Emma's morning routine and to deal with her afternoon lows. ... but there I go explaining myself again.
I feel inadequate when I don't make enough money to pay for the things my kids need. I usually do well, we get by...sometimes there is money left over. Sometimes there is not enough to stretch. And I feel like an incredible loser for not taking a full-time job. I remind myself WHY I did not. Why I am here. And that my kids are so happy with me here. I know what works for us. And I keep trying to make it work.#singlemom #autism
Thursday, February 26, 2015
autism, Emma, and gender stereotype obsession
If you've ever wondered why Emma talks about pink anything, sparkles, hair bows, eye shadow, lip gloss, dresses, dancing, fashion, pop music sooooooo much, this is a screenshot of an excerpt from an article I came across that will give you a little bit of insight. Yes, it is just who she is. But it is also typical for her to obsess over these gender-specific stereotypes as an Autistic person. It once (as near as a decade ago) was only noted in boys on the Spectrum to have obsessive interests and to talk about them in a one-sided conversation. Two specialists we took Emma to as a preschooler did not recognize this in her and told us she couldn't have autism because she talked too much and she was doing pretend play( dressing as a dancer and dancing.) It took a third (a wonderful, wonderful, educated doctor and psychologist who was extremely thorough in her observations, to finally diagnose her. ... even after a neurologist telling us Emma had autistic-like characteristics at the age of 1! Anyway, just a little Autism post for you. <3 .... and Emma does attempt to make conservation. :-) she asks your opinions on colors and favorites and likes. And she asks again. And again. We often have the exact same conversations day after day, if not for weeks. Even months, some topics persist. It's a little like Groundhog Day sometimes. <3 We once were talking in the car, and I dropped her off somewhere. I picked her up later, and she started up the conversation right where we had left off. :-)
Thursday, February 19, 2015
not gonna buy them. nope.
I am a sucky mom. I don't give a shit about Spring Picture day. I never dress my kids nice or do their hair neat. Those picture packages are twice as much as fall pics. We never buy them. I bet the kids looked fabuloso in theirs today.
Wednesday, February 18, 2015
a morning meltdown
Charlie sniffed the ground, looking for a good spot to relieve his full bladder. I held onto his leash, looked up at the deep, thick, blackness around me. Snowflakes, so many of them, revealed in the lamplight. I said a prayer to the Universe, to keep me going, to give me warmth and light and assurance and the right words to say and a calm voice to say them, when I returned to the house.
Monday, February 9, 2015
nobody likes a Monday (an Autism post)
Emma slept until after supper tonight. Missed most of her Papaw's birthday dinner. Lots of crying after school. I put her to bed. Felt bad because my temper was short. She slept so long-- I knew she must have been holding a lot in all day at school, trying to make it through. She ate and told Papaw "Happy Birthday," or rather I asked her to say it and she never did. :-) but it was implied ;-) After I put Noah to bed, we did a little homework. But not all. We need some sleep. -----> I <----- need sleep. <3
Thursday, February 5, 2015
i get to be Emma's mom (an Autism blog post)
I read a post in The Mighty, and I really felt a connection to the writer. This mom and I feel the same about a lot when it comes to our Autism kids.
I got to thinking...
I remember when Emma didn't say door. She would say, "Rectangle," over and over again. I remember when she obsessed over heart shapes, pointing them out even in old trim work in an ancient house we lived in and in the intricate patterns of Mamaw Virginia's shirt. She was a little over a year old. She didn't look at us. We wondered if she was deaf. She lacked fine motor skills to hold a spoon or pincer a Cheerio. She lacked gross motor skills and muscle tone to crawl or pull herself up. She didn't look through picture books with us but instead flipped the pages, flapping the back of her left hand on them. For the feel. For the noise. She would stare for a long time at the carpet, at the colored fibers. She would hum and rock and not answer if we said her name.
Sometimes I wish I could go back in time. Hold her so much more. I would burn the books that told me to let her cry it out. I would hold her all night long. Fuck those 'experts' -- I didn't know.
I know it's not my fault. It wouldn't change a thing. But I still wish I could go back and hold her again when she was a roly poly chubby baby.
I remember all the times I cried. Because I didn't have answers. My baby was a sweet, "good" baby. But she didn't look at me. She never fussed, but she was like a ragdoll. The other babies crawled and walked and talked. Emma lay on her blankey watching the blades of the ceiling fan whir around. I was sad. I lost friends because the other moms' babies were beginning to toddle. Emma and I were left behind.
So I did my own research, when doctors failed me. I learned how to teach Emma. We learned and grew together. She still teaches ME so much.
I remember:
pictures of beans and pictures of juice on the fridge door. If she wanted something, she had to point to the picture. Because yelling or grunting wasn't acceptable.
pictures and words on cards taped all over our house, labeling Door, Window, Bedroom, Cups
flashcards I made from magazine cut outs and my own (poor) drawings taped in the bathroom, detailing step by step instructions on how to go about doing your business in the correct order, then washing your hands
a binder of cards that had pictures of the stores we went to, so I could show her in what order we would go to them. in hopes of avoiding a meltdown
I also remember soooo much laughter. the happiest child you ever saw. I remember milestones-- nevermind when she achieved them. It's not even important. We celebrated each and every one.
I get to be Emma's mom. And Noah's. <3 and I celebrate THAT.
just look at her now! my dancing girl. my sparkling girl. She shines!
We have conversations sometimes. She is interested in what others have to say.
Yes, she tells me every day what her favorite colors are. She tells me what her dolls are doing in their "lives." It's nearly always the same. Sometimes I say "uh huh... yeah," but she is telling me. I don't care if it IS a scenario she saw in a Monster High video, she is still telling me about it. And it's so beautiful to me.
I got to thinking...
I remember when Emma didn't say door. She would say, "Rectangle," over and over again. I remember when she obsessed over heart shapes, pointing them out even in old trim work in an ancient house we lived in and in the intricate patterns of Mamaw Virginia's shirt. She was a little over a year old. She didn't look at us. We wondered if she was deaf. She lacked fine motor skills to hold a spoon or pincer a Cheerio. She lacked gross motor skills and muscle tone to crawl or pull herself up. She didn't look through picture books with us but instead flipped the pages, flapping the back of her left hand on them. For the feel. For the noise. She would stare for a long time at the carpet, at the colored fibers. She would hum and rock and not answer if we said her name.
Sometimes I wish I could go back in time. Hold her so much more. I would burn the books that told me to let her cry it out. I would hold her all night long. Fuck those 'experts' -- I didn't know.
I know it's not my fault. It wouldn't change a thing. But I still wish I could go back and hold her again when she was a roly poly chubby baby.
I remember all the times I cried. Because I didn't have answers. My baby was a sweet, "good" baby. But she didn't look at me. She never fussed, but she was like a ragdoll. The other babies crawled and walked and talked. Emma lay on her blankey watching the blades of the ceiling fan whir around. I was sad. I lost friends because the other moms' babies were beginning to toddle. Emma and I were left behind.
So I did my own research, when doctors failed me. I learned how to teach Emma. We learned and grew together. She still teaches ME so much.
I remember:
pictures of beans and pictures of juice on the fridge door. If she wanted something, she had to point to the picture. Because yelling or grunting wasn't acceptable.
pictures and words on cards taped all over our house, labeling Door, Window, Bedroom, Cups
flashcards I made from magazine cut outs and my own (poor) drawings taped in the bathroom, detailing step by step instructions on how to go about doing your business in the correct order, then washing your hands
a binder of cards that had pictures of the stores we went to, so I could show her in what order we would go to them. in hopes of avoiding a meltdown
I also remember soooo much laughter. the happiest child you ever saw. I remember milestones-- nevermind when she achieved them. It's not even important. We celebrated each and every one.
I get to be Emma's mom. And Noah's. <3 and I celebrate THAT.
just look at her now! my dancing girl. my sparkling girl. She shines!
We have conversations sometimes. She is interested in what others have to say.
Yes, she tells me every day what her favorite colors are. She tells me what her dolls are doing in their "lives." It's nearly always the same. Sometimes I say "uh huh... yeah," but she is telling me. I don't care if it IS a scenario she saw in a Monster High video, she is still telling me about it. And it's so beautiful to me.
Tuesday, January 27, 2015
cats are enablers...and other thoughts i had while wishing to the stars that noah would fall asleep)
I got this dog, Charlie, for Emma and Noah. Mostly Emma, i told myself. Turns out, my soul has needed him the most. And apparently my subconscious likes a good challenge. Ugh, way to go, subconscious. ;-)
Things I have learned about dogs and cats (and myself) in the last few days:
1. Dogs need to be let out a lot. I need slippers and a hat by the door at all times.
2. It is f%*king cold outside.
3. The constant fresh air is invigorating.
4. My arms & legs are getting stronger from being pulled around by a dog AND me pulling him another direction. ;-)
5. Cats are enablers. They encourage depression. Think about it: my cats are living for the days when all I want to do is burrow under blankets, eat ranch dip, and cry while binge-watching Netflix.
6. Dogs are a super good reason to be more diligent about emptying the trashcans and taking it outside.
7. I now have company on my walks. Company that never says a word, but makes me work harder, never slowing down.
8. Young cats are stinkers who like to tease a dog.
9. Cats appreciate us more as life begins to resume some normality. The purring is louder.
10. I have less time to dwell on negativity when there's a dog who requires my attention.
11. 40 pound dogs can magically fit through a door intended for cats. I seriously hope he doesn't break it.
12. Sometimes our dog needs me to sit with him while he falls asleep. Because he's never had love before now. But I love him. And the kids love him. And even though I am often exhausted, I have lain down with the kids many, Many, MANY nights. So now I have a furry baby too.
13. This dog tells on Emma when she's up in the night digging around in the kitchen. Charlie would like everyone to be sleeping.
I would like to be sleeping. I should be. ...goodnight.
Things I have learned about dogs and cats (and myself) in the last few days:
1. Dogs need to be let out a lot. I need slippers and a hat by the door at all times.
2. It is f%*king cold outside.
3. The constant fresh air is invigorating.
4. My arms & legs are getting stronger from being pulled around by a dog AND me pulling him another direction. ;-)
5. Cats are enablers. They encourage depression. Think about it: my cats are living for the days when all I want to do is burrow under blankets, eat ranch dip, and cry while binge-watching Netflix.
6. Dogs are a super good reason to be more diligent about emptying the trashcans and taking it outside.
7. I now have company on my walks. Company that never says a word, but makes me work harder, never slowing down.
8. Young cats are stinkers who like to tease a dog.
9. Cats appreciate us more as life begins to resume some normality. The purring is louder.
10. I have less time to dwell on negativity when there's a dog who requires my attention.
11. 40 pound dogs can magically fit through a door intended for cats. I seriously hope he doesn't break it.
12. Sometimes our dog needs me to sit with him while he falls asleep. Because he's never had love before now. But I love him. And the kids love him. And even though I am often exhausted, I have lain down with the kids many, Many, MANY nights. So now I have a furry baby too.
13. This dog tells on Emma when she's up in the night digging around in the kitchen. Charlie would like everyone to be sleeping.
I would like to be sleeping. I should be. ...goodnight.
Saturday, January 24, 2015
a Charlie for Emma
So... for quite some time now, the kids have wanted a dog. I personally have not been ready for one. I told them we would wait until this year, doing lots of research until now. I knew we can't handle a puppy. Not a big dog that knocks kids over. Not a tiny dog that barks incessantly. A dog for both of my children but one who can especially bond with Emma.
We have cats, and cats are cats --bossy and nitpick-y. And they tend to shy away from Emma because of her sometimes impulsive movements and loud breathing and noises.
I finally came upon this adorably handsome guy on a dog rescue site. He's approximately 6 years old and medium size, weighing in at 40 pounds. He was rescued from people who had him chained in filth for years. His fur was matted and had to be shaved. It is growing back nicely and so soft! The rescue lady thought he would be a good match for Emma. He's quiet. His description reads, "... is a gentle soul, and he carries a bit of sadness." Well, that melted me.
My biggest concern are these cats, who rule this house. I hope everyone can adjust okay.
He comes with a name: Bullet. We think that's a silly name for such a small, shy guy. He looks just like a Charlie. So Charlie it shall be. *thank goodness he wasn't answering to 'Bullet' anyway!
Here we are, January 2015, learning how to care for a dog. Lordy, you have to let them out to pee and poop and play! ;-( we do have a big fenced in yard and live super close to the nature trail.
I wrote some of this while Emma slept on me *rarer than rare. She hasn't done this since she was 3,* and Charlie slept on Emma's carpet.
Wish us luck. Peanut attacked him once. And he peed on the carpet once.
I know we have a lot of love to give him. He's so sweet.
We have cats, and cats are cats --bossy and nitpick-y. And they tend to shy away from Emma because of her sometimes impulsive movements and loud breathing and noises.
I finally came upon this adorably handsome guy on a dog rescue site. He's approximately 6 years old and medium size, weighing in at 40 pounds. He was rescued from people who had him chained in filth for years. His fur was matted and had to be shaved. It is growing back nicely and so soft! The rescue lady thought he would be a good match for Emma. He's quiet. His description reads, "... is a gentle soul, and he carries a bit of sadness." Well, that melted me.
My biggest concern are these cats, who rule this house. I hope everyone can adjust okay.
He comes with a name: Bullet. We think that's a silly name for such a small, shy guy. He looks just like a Charlie. So Charlie it shall be. *thank goodness he wasn't answering to 'Bullet' anyway!
Here we are, January 2015, learning how to care for a dog. Lordy, you have to let them out to pee and poop and play! ;-( we do have a big fenced in yard and live super close to the nature trail.
I wrote some of this while Emma slept on me *rarer than rare. She hasn't done this since she was 3,* and Charlie slept on Emma's carpet.
Wish us luck. Peanut attacked him once. And he peed on the carpet once.
I know we have a lot of love to give him. He's so sweet.
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