My husband and I have often talked about how Gracie is like a cat. They say all cats have Aspergers but maybe all cats are just Autistic.
1. Gracie is very affectionate but only when SHE feels like it. Like a cat she will sit on your lap and make happy noises but only when it suits her, and only on her terms. Usually when it's inconvenient to me, while typing, trying to make dinner or attending to her sister. Of course I try to put down what I'm doing and love on my daughter. Our cuddle time lasts until Gracie has had enough then she hops down and continues with her day.
2. Gracie is extremely smart and is capable of doing much more than she's given credit for, but like a cat she doesn't respond to commands. A cat is as capable as a dog to fetch, sit, roll over, and to shake hands the difference is that a cat refuses to do so. I've caught Gracie matching letters, playing appropriately with shape sorting toys, and dressing her dolls. At evaluations she sits there staring blankly as she is scored as not having the skill.
3. Gracie only sometimes responds to her name but will always respond to food. Just like a cat will come running to the sound of a can opener, Gracie comes running to the rustle of a box, she has an uncanny instinct about when I'm about to make a snack and is the first to want a bite.
4. Gracie is a crazy ball of energy. Do you know how a cat will be sitting perfectly still then out of no where run around the room in a terror, up and down furniture, leaping around then run back to their spot and sit down like nothing happened? That's Gracie out of no where she gets crazy, and sequels as she runs circles around us then stops as if it never happened.
5. Gracie is driven by her own needs. A cat naps when she's tired, baths her own fur when taking a bath,and eats when hungry. Gracie is also driven to take care of herself without assistance. When Gracie is tired I find her on the couch asleep, when she is hungry she climbs counters, and pushes chairs to cupboards, when she's dirty she removes her clothes and sits in the bathtub waiting for me, when her pullup is wet she removes it and puts a fresh one on. Sometimes I wonder if I left Gracie home alone will the right supplies if she would be okay. Somehow I think she would find a way to take care of herself.
Friday, December 21, 2012
Saturday, September 8, 2012
My Other Amazing Autistic Child
This is Adam my amazing step son who has PDD-NOS
My first exposure to Autism happened in the summer of 2008 when my then 6 year old step son came to our home for his summer time with his father. At first I didn't know what to make of him. He was a sweet, somewhat quiet kid who seemed shy and a little delayed. I wasn't quite sure how to respond when his first reaction to seeing an ultrasound picture of soon to be born Gracie was "she looks like a demon baby". He said it so matter of fact that I was stunned, not really offended. I also experienced my first Autistic meltdown with him when on a road trip he spilled water on his pants. Now I regret how upset I got not understanding this trigger.
Over the years as I have came to know Adam I realize he simply says what he thinks not to be mean or offensive just simply facts as he see's them. When he reminds EVERY person we meet that I'm his STEP mom and not his REAL mom it's just Adam and his literal thinking not wanting anyone to mistake his mother and I.
I love his amazing memory and how he can remember facts about Lego sets and the name, now many pieces and how much they cost. I love how hard he tries to do things that come so easy to many of us. I love how he has his own unique way of talking. Instead of saying his sister is in the kitchen he will tell me that his sister is in the room with the oven.
He has taught me about how to rephrase instructions in a way that he can understand and how to answer extremely literal questions but most of all to let go of exceptions not only about him as a person but how to define my relationship as a step mom.
Sunday, August 26, 2012
Gracie's Birthday
Gracie is 4 years old today. I'm having a hard time believing that the tiny preemie I brought home 4 yrs ago is so tall, with such long pretty blonde hair. I don't feel like I can possibly have a preschooler but here we are 4 yrs later.
Today has had so many mixed emotions, this isn't how I planned. Part of me mourns that I'm not going to throw her a Princess Party with her friends, where we wear sparkling crowns, sip tea, and make up our pretty princess names.
The truth is that Gracie has no idea it's her birthday and has no concept of her age. She has no idea that tonight we were celebrating her. She just knew she likes pizza, and cake. She did love our guests her older brothers, their mother (her "Aunt" Tamra) and her brother's girlfriend. Gracie spent the evening in her diaper and pj shirt, and we gave her playdough as a gift as it fills her sensory needs.
But we did have a good evening Gracie loved the dinner and her favorite people were with her. In the end it's me who mourns over what Gracie might have been, she's happy just to be here.
Today has had so many mixed emotions, this isn't how I planned. Part of me mourns that I'm not going to throw her a Princess Party with her friends, where we wear sparkling crowns, sip tea, and make up our pretty princess names.
The truth is that Gracie has no idea it's her birthday and has no concept of her age. She has no idea that tonight we were celebrating her. She just knew she likes pizza, and cake. She did love our guests her older brothers, their mother (her "Aunt" Tamra) and her brother's girlfriend. Gracie spent the evening in her diaper and pj shirt, and we gave her playdough as a gift as it fills her sensory needs.
But we did have a good evening Gracie loved the dinner and her favorite people were with her. In the end it's me who mourns over what Gracie might have been, she's happy just to be here.
Monday, August 20, 2012
First Day of School
I took her in to her class with huge smiles, then I got out to my car and sobbed like a baby. My baby is taking her first steps of independence and it's bittersweet. I hope she learns the skills I failed to teach her and learns from both the teachers and other children.
Most of all I can't wait until 3 pm when I can go and pick her up.
Wednesday, August 15, 2012
Fly Away Movie Review
I recently saw a movie that was so honest about the struggles of low functioning Autism it made me cry. I found Fly Away on Netflix instant streaming. It's the story of a single mother and her struggles to raise her low functioning Autistic daughter. I loved how it didn't flinch about the meltdowns, and the exhaustion of having a child with big limitations. It also showed how Autism contributed to the end of her marriage.
But at the same time it also showed how much she loves her daughter and the small moments that the parents of Autistic children live for. It showed that under all the Autism she was a girl who loves her parents, ice cream, and her stuffed lamb.
Thursday, August 9, 2012
Sick Kids!
Gracie woke up yesterday running a fever and acting lethargic and my heart sank. Having a sick kid is hard, but having a sick Autistic kid is even harder. I have no idea if anything hurts, I'm not even sure she knows as I suspect Gracie is hyposenstive to pain. It could be an ear infection or just an average virus. Of course the worst ran through my head. I suspected strep throat, ear infections, even UTIs. All the common aliments that my friends complain about.
I feel bad because Gracie is almost never sick, In fact she's the second healthiest kid I know beat only by her sister. I almost don't know how to care for a sick child since my own children are so rarely sick. I didn't remember how often to push fluids or if you take a child's temperature under their arm if you add a degree or subtract one.
I called the nurse praying that I didn't have to take her in. Going to the doctor is a very traumatic experience. Gracie HATES to be touched, and it will cause a major meltdown. By major meltdown I mean inconsolable screaming, hitting anyone who touches her, and throwing things. I'm not even sure a doctor would be able to get close enough to examine her without Gracie being physically restrained.
The nurse finally called me back and after reviewing everything we decided to wait 3 days and to reevaluate. Thankfully Gracie's fever broke this afternoon and she's acting normal or at least as normal as she can. I am however dreading her 4 year well child checkup at the end of the month.
I feel bad because Gracie is almost never sick, In fact she's the second healthiest kid I know beat only by her sister. I almost don't know how to care for a sick child since my own children are so rarely sick. I didn't remember how often to push fluids or if you take a child's temperature under their arm if you add a degree or subtract one.
I called the nurse praying that I didn't have to take her in. Going to the doctor is a very traumatic experience. Gracie HATES to be touched, and it will cause a major meltdown. By major meltdown I mean inconsolable screaming, hitting anyone who touches her, and throwing things. I'm not even sure a doctor would be able to get close enough to examine her without Gracie being physically restrained.
The nurse finally called me back and after reviewing everything we decided to wait 3 days and to reevaluate. Thankfully Gracie's fever broke this afternoon and she's acting normal or at least as normal as she can. I am however dreading her 4 year well child checkup at the end of the month.
Saturday, August 4, 2012
The Unexpected Blessings of Autism
I was talking to a friend of an Autistic little boy a little older than Gracie. We started talking about how Autism has changed our families but also ourselves. We are completely different women and mothers than we were before we started our journeys. Here are some of the unexpected blessings of Autism.
1. I take life at a slower pace now. Gracie is not going to preform with her peers she is well below them in skills and we don't know if she will ever catch up. Most other almost 4 yr olds are busy preparing for pre k and kindergarten. They are busy learning their alphabets, number, colors, shapes and how to spell their names. Gracie is under to pressure, and we follow her lead. At this point I don't even know what her age appropriate milestones even are.
2. I've learned to savior every single victory big and small. Even if Gracie says just a single word it's more than she said yesterday. If she poops and doesn't smear it all over than I dance around the house with her. Every time Gracie looks when I call her name, or does a simple task such as throwing away her own diaper we celebrate.
3. I've learned patience like I never dreamed of before. I thought I was patient before after all I was a wife and a mother, I'd survived colic, the terrible 2s and everything in between. Then when Gracie's Autism got severe and she began to meltdown many times a day I learned patience at another level. Now instead of losing my temper on the 3rd meltdown I hold her tightly as we rock and I hum. I feel helpless not knowing what upset her but desperately wanted to give her comfort in my arms.
4. I've learned to to care what any one else thinks. A couple of years ago I would have died of embarrassment if my child threw a fit in public, tried to take off her clothes, or wanted to carry around a lone shoe. But now all of that is common place and I don't care what anyone thinks about it. Gracie is different and always will be, a person might not notice it at first glance but they will see it at second glance. I don't have the luxury of caring about strangers opinions anymore. It's too draining and my family takes ever last ounce out of me as it is.
5. I've learned how to live in the moment. Once of the most amazing things about Gracie is she lives for now. She doesn't seem to remember yesterday and she has no concept of tomorrow. If she's happy she erupts into giggles simply because she feels good about right now, or if she starts crying something right now upset her. Gracie even has mood swings where she will go from laughing to crying for no apparent reason. I'm learning how to let yesterday go with Gracie and not worry about tomorrow because I can be happy for this one moment.
1. I take life at a slower pace now. Gracie is not going to preform with her peers she is well below them in skills and we don't know if she will ever catch up. Most other almost 4 yr olds are busy preparing for pre k and kindergarten. They are busy learning their alphabets, number, colors, shapes and how to spell their names. Gracie is under to pressure, and we follow her lead. At this point I don't even know what her age appropriate milestones even are.
2. I've learned to savior every single victory big and small. Even if Gracie says just a single word it's more than she said yesterday. If she poops and doesn't smear it all over than I dance around the house with her. Every time Gracie looks when I call her name, or does a simple task such as throwing away her own diaper we celebrate.
3. I've learned patience like I never dreamed of before. I thought I was patient before after all I was a wife and a mother, I'd survived colic, the terrible 2s and everything in between. Then when Gracie's Autism got severe and she began to meltdown many times a day I learned patience at another level. Now instead of losing my temper on the 3rd meltdown I hold her tightly as we rock and I hum. I feel helpless not knowing what upset her but desperately wanted to give her comfort in my arms.
4. I've learned to to care what any one else thinks. A couple of years ago I would have died of embarrassment if my child threw a fit in public, tried to take off her clothes, or wanted to carry around a lone shoe. But now all of that is common place and I don't care what anyone thinks about it. Gracie is different and always will be, a person might not notice it at first glance but they will see it at second glance. I don't have the luxury of caring about strangers opinions anymore. It's too draining and my family takes ever last ounce out of me as it is.
5. I've learned how to live in the moment. Once of the most amazing things about Gracie is she lives for now. She doesn't seem to remember yesterday and she has no concept of tomorrow. If she's happy she erupts into giggles simply because she feels good about right now, or if she starts crying something right now upset her. Gracie even has mood swings where she will go from laughing to crying for no apparent reason. I'm learning how to let yesterday go with Gracie and not worry about tomorrow because I can be happy for this one moment.
Subscribe to:
Posts (Atom)