WARRIOR MOTHERS
I like that term. I came across the description "warrior mothers" today and actually stopped to read the article (I wish I was cool like that and could link it here-I would if I could). Warrior mothers are moms that are out there, fighting like mad for their own kids and other children that have issues-be it autism, cerebral palsy, cancer, seizure disorder-doing anything and everything in their power to advocate for change and improvement. And doing all they can to make their child's life as normal as possible, as happy as possible. I mean really, that's what any parent wants for their child right?~to be happy in life? So what if they are not a CEO or a carpenter or a short order cook. Can I, as the parent, help them be happy and productive on some level during their lifetime? And if helping them acheive their best means being "that mom" at IEP meetings, parent/teacher conferences, doctor's appointments, therapies, (and the list goes on and on forever) then that is absolutely what I will do. And do not stand in my way, because I am on a mission.
And by the way, the term is warrior mother, but I happen to know a warrior father personally. He's done it all-a field trip to the dentist with a group of 16 3 year-olds with our daughter and coaching a tee ball team with our son. He's watched Mary Poppins with our girl, repeatedly in the same day, because that is her favorite movie at the moment (that alone deserves some credit). He was right beside me for an entire week this summer, his only week of vacation, for a parent's autism symposium-he was completely committed to making it a fun trip for us and it was fun and informative. He's a rare breed-a true warrior when it comes to his family.
Monday, February 23, 2009
Saturday, February 21, 2009
Good times
It's bathtime. At the end of a fun Saturday full of a visit with the kids to Grandma and Papa, some yardwork, and building a big clubhouse out of a cardboard box.
Ending the day with Jello and cool whip. Hoping to watch Becoming Jane, but that's just me. No one else in my house is going to "go there" with me.
Ending the day with Jello and cool whip. Hoping to watch Becoming Jane, but that's just me. No one else in my house is going to "go there" with me.
Monday, February 16, 2009
the "A" word
I need to tell this. I need to write this down, even if no other eyes see it or no one understands or empathizes with our story. As much as it hurts to see it in black and white, that amount of pain has been festering inside me for months, maybe years as we've came to accept, in a way, the way it is.
One way that I've been working on accepting our challenge in life is that it could be worse-way worse.
Our childcare provider came to me concerned when our daughter was almost 18 months old. She described things I had noticed, but hoped were in my head. Our girl's refusal to listen or mind, her dislike of other people, her strange eating and playing tendencies, her disinterest in toys and peers, her speech delays. Plus her amazing temper tantrums, unlike anything I had ever witnessed before. As an early childhood educator, I thought I was just over-reacting, you know, reading into normal behaviors something that wasn't there. Then I really started to watch and the more I saw, the more concerned I became. Our baby's preference to be left in the baby carseat instead of being held, her colicky behavior way past the stage of colic, her disinterest in watching me or her other caregivers all took on a sinister haze as I considered the "A" word.
"Don't worry about autism. She doesn't have it."
Her initial evaluators through the state early intervention services (aka "the professionals") told me. My mom told me the same. I couldn't wrap my mind around her test scores, which were way below the developmental delay cut-offs. Surely she wasn't that far behind already. Surely I would have noticed my baby failing. We did what we could-speech therapy, occupational therapy- and I pushed the "A" word to the back of my mind.
Fast forward 2 years. Not alot of progress, but I have adjusted my thinking. I have let go of my preconceived dreams of a perfect, normal child and am prepared now to embrace my daughter for whatever may come. I am determined to fight for her to the best of my abilities.
And, as most parents in this situation know, more testing follows. This time, the autism diagnosis comes to the forefront again. And I grieve again all over, but we do what has to be done. More testings and the official, pediatric neurologist diagnosis: pervasive developmental delay-not otherwise specified (PDD-NOS). And part of me rejoices because we learn some wonderful news: there's a good chance that she will be on level developmentally with her peers by age 8 or 9. And part of me grieves yet again because this is not something that she will be able to have a miracle cure for; she will struggle and cope with her sensory issues for the rest of her life.
And now, fast forward another 8 months. 8 months of intensive therapy, inclusion in a regular early childhood classroom, IEP goals, one-on-one at home. And 8 months of glorious progress! 8 months of little successes building on top of one another! My heart soars. Can I dare to hope that the worst is behind us? Or is this just a smooth part of the highway and any day we are going to need the 4 wheel-drive because-guess what?- we are going off road again?
I truly don't know.
But I know this. At a seminar this summer, a mother stood up and told our group that when autism came knocking, it knocked at the wrong door. Her family wasn't going down without a fight, dammit.
I second that.
One way that I've been working on accepting our challenge in life is that it could be worse-way worse.
Our childcare provider came to me concerned when our daughter was almost 18 months old. She described things I had noticed, but hoped were in my head. Our girl's refusal to listen or mind, her dislike of other people, her strange eating and playing tendencies, her disinterest in toys and peers, her speech delays. Plus her amazing temper tantrums, unlike anything I had ever witnessed before. As an early childhood educator, I thought I was just over-reacting, you know, reading into normal behaviors something that wasn't there. Then I really started to watch and the more I saw, the more concerned I became. Our baby's preference to be left in the baby carseat instead of being held, her colicky behavior way past the stage of colic, her disinterest in watching me or her other caregivers all took on a sinister haze as I considered the "A" word.
"Don't worry about autism. She doesn't have it."
Her initial evaluators through the state early intervention services (aka "the professionals") told me. My mom told me the same. I couldn't wrap my mind around her test scores, which were way below the developmental delay cut-offs. Surely she wasn't that far behind already. Surely I would have noticed my baby failing. We did what we could-speech therapy, occupational therapy- and I pushed the "A" word to the back of my mind.
Fast forward 2 years. Not alot of progress, but I have adjusted my thinking. I have let go of my preconceived dreams of a perfect, normal child and am prepared now to embrace my daughter for whatever may come. I am determined to fight for her to the best of my abilities.
And, as most parents in this situation know, more testing follows. This time, the autism diagnosis comes to the forefront again. And I grieve again all over, but we do what has to be done. More testings and the official, pediatric neurologist diagnosis: pervasive developmental delay-not otherwise specified (PDD-NOS). And part of me rejoices because we learn some wonderful news: there's a good chance that she will be on level developmentally with her peers by age 8 or 9. And part of me grieves yet again because this is not something that she will be able to have a miracle cure for; she will struggle and cope with her sensory issues for the rest of her life.
And now, fast forward another 8 months. 8 months of intensive therapy, inclusion in a regular early childhood classroom, IEP goals, one-on-one at home. And 8 months of glorious progress! 8 months of little successes building on top of one another! My heart soars. Can I dare to hope that the worst is behind us? Or is this just a smooth part of the highway and any day we are going to need the 4 wheel-drive because-guess what?- we are going off road again?
I truly don't know.
But I know this. At a seminar this summer, a mother stood up and told our group that when autism came knocking, it knocked at the wrong door. Her family wasn't going down without a fight, dammit.
I second that.
Sunday, February 15, 2009
start at the first....
Hello all. I am Tina and this is my first time with the whole blogging experience. I have much to say, but don't know if it is fit for human consumption. So I'll start with a history of me and go from there:
I have a good life. That's me in a nutshell.
I was raised in a small town, by both parents. We didn't have much money, but our house was full of love, laughter, life. I had a big, extended family full of grandparents, uncles, aunts, cousins, and greats, growing up. Many have passed on, but other loved ones have filled in those empty slots. The people have changed and the bonds have evolved, but family is still very vital to me on an intrinsic level.
I have had the blessing to marry the love of my life. It feels like the comfort of coming home blended with the excitement of our first kiss every single time I see him. We look so normal from the outside, that I wonder if others would ever guess that my heart still lurches when he walks into the room, 15 years later. We are a typical family in many ways. We have 2 kids, we have a dog and we have a cat. We live in the same small town where we both grew up, one block away from our church and within walking distance of the kids' school. Norman Rockwell couldn't have painted it better, I kid you not. It's exactly what I wanted growing up.
My son is exactly what people have in mind when they think of all-boy. Hiking, sports, biking, anything outside-plus a hefty dose of video/computer games obsession. He's into everything, and loves every minute of it. He's never still, never silent, always busy. And he's right in the midst of the snaggletooth phase, so he whistlesss when he talksss. Absolutely adorable, in my opinion. Big green eyes, eyelashes a model would kill for, a smattering of freckles, and a huge, toothless grin at all times.
My daughter is a beauty. Big blue eyes, blond curls like Shirley Temple, a sweet innocent smile and a laugh like the pealing of little bells. She is a girly-girl, loves to shop, loves shoes, loves glitter and jewelry and "sparklies". Hate, hates spiders. Loves to "help" me cook. Loves to color, paint and draw. And loves to watch Disney movies and read happily ever after books. She's right in the middle of the why? what? tell me more phase.... I love it. It wears me out sometimes, but I love it all the more because it is so fleeting, a moment in time and then it's gone.
There are other stories to tell and those are why I feel compelled to start a journal of our life. But this is the beginning and we will start here for now.....
I have a good life. That's me in a nutshell.
I was raised in a small town, by both parents. We didn't have much money, but our house was full of love, laughter, life. I had a big, extended family full of grandparents, uncles, aunts, cousins, and greats, growing up. Many have passed on, but other loved ones have filled in those empty slots. The people have changed and the bonds have evolved, but family is still very vital to me on an intrinsic level.
I have had the blessing to marry the love of my life. It feels like the comfort of coming home blended with the excitement of our first kiss every single time I see him. We look so normal from the outside, that I wonder if others would ever guess that my heart still lurches when he walks into the room, 15 years later. We are a typical family in many ways. We have 2 kids, we have a dog and we have a cat. We live in the same small town where we both grew up, one block away from our church and within walking distance of the kids' school. Norman Rockwell couldn't have painted it better, I kid you not. It's exactly what I wanted growing up.
My son is exactly what people have in mind when they think of all-boy. Hiking, sports, biking, anything outside-plus a hefty dose of video/computer games obsession. He's into everything, and loves every minute of it. He's never still, never silent, always busy. And he's right in the midst of the snaggletooth phase, so he whistlesss when he talksss. Absolutely adorable, in my opinion. Big green eyes, eyelashes a model would kill for, a smattering of freckles, and a huge, toothless grin at all times.
My daughter is a beauty. Big blue eyes, blond curls like Shirley Temple, a sweet innocent smile and a laugh like the pealing of little bells. She is a girly-girl, loves to shop, loves shoes, loves glitter and jewelry and "sparklies". Hate, hates spiders. Loves to "help" me cook. Loves to color, paint and draw. And loves to watch Disney movies and read happily ever after books. She's right in the middle of the why? what? tell me more phase.... I love it. It wears me out sometimes, but I love it all the more because it is so fleeting, a moment in time and then it's gone.
There are other stories to tell and those are why I feel compelled to start a journal of our life. But this is the beginning and we will start here for now.....
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