I am a tattoo virgin. I have always said that I would never get a tattoo and if I did, it would have to be something very meaningful. There has never been anything I would be willing to put on my body forever. Oh, and for sure it would be hidden if I ever did decide to get one. I know tattoos are mostly accepted and common, but honestly, I have never gotten over the stigma that they are reserved for heathens, even though I know this isn't the case at all in 2012. I know that sounds terrible, but I always say there is a fine line between art and trash when it comes to tattoos. Some are beautiful, thought out, meaningful, and some are just well....yuck.
Fast forward to now. I guess this blog will serve as warning for my parents. I have always valued their opinions probably more then the average kid. I didn't even get my belly pierced until I was 18 and got my parents PERMISSION because I didn't want them to be ashamed of me. It's funny because I was such a terrible teenager, but I did always want their acceptance. I am going to get a tattoo. It is going to be visible and it is going to honor my son. It will also be a conversation piece to open the door for autism awareness. It will not be huge and will be done at a very reputable place.
I am 30 years old. You would think the first tattoo would have happened in my younger and more rebellious phase and something I may regret later. Nope. I know I won't regret this tattoo and it will be displayed proudly for all to see. So mom and Dad, sometime in the next few weeks, I am going to need a babysitter. Hope you don't mind.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Monday, August 27, 2012
Tuesday, July 31, 2012
Update
On August 9th Lukas will be continuing with the assessments that we didn't finish at his most recent developmental assessment to find out where on the "spectrum" he falls. If you read my earlier post about the assessment, you know that I was so distraught there was no way that I could finish with all of the assessments and questioning. I spoke with Lukas' case manager today and she said the new psychologist who is coming out (I did not want the last one in my house again!) needs to do her scoring back at the office so she can think and get a full picture of Lukas. I thought, "Great, she's putting some real thought into this." I pondered on this some more. While this explanation may be true, I am leaning toward thinking that they actually are scared I am going to fall apart again and would rather give me the results over the phone. Nice.
I'm so sorry I cried and was upset when I was told out of nowhere that my son has a developmental disorder that will affect him his entire life and that his future is unclear. I'm sorry I snapped at a cold psychologist who basically accused me of not caring about my son because I became overwhelmed and said "I can't handle this shit." Whatever. Let them walk on eggshells around me. All I ask for is some positivity, warmness, and a shoulder to cry on. I'm a nurse and that's what we do. I wasn't even a quarter as bad as some of the people I deal with on a regular basis! In fact, I think I was nice.
We are still in limbo with some things. We have increased Lukas' play therapy to twice a week. I am still waiting on a call from Occupational Therapy and from his new Speech Therapist. My friend here in town is a special education teacher and she has agreed to come and work with Lukas as his tutor. I also still want Lukas to go to his preschool when they start up again for the school year. He loved school last year and I think it is important for him to be around other children. I am scared they are going to say they won't take Lukas. I know this won't happen, but I worry about him being the only kid who isn't "neurotypical." Will they provide him a little extra attention?
Last year, the teacher's had sippy cups they used for the class. I told them that Lukas was unable to drink out of those cups and they agreed to let me bring his straw cup. I noticed once when we went on a fieldtrip that they packed the sippies, but not his straw cup. They said they had been giving him the other cup and sometimes he would drink out of it. I call bs. I didn't make a stink, though. They handed him the cup on the field trip and of course, he didn't take it and drank nothing while the other kids drank their juice. The other kids munched down their snack also, while of course, Lukas wouldn't eat it. Sigh.
My mother was expressing her disgust the other day about how nowadays people just want everyone, especially kids, to be "little tin soldiers." Exactly the same. We instantly stamp the label on anyone who is "different" or "quirky." Mothers sit around and compare and see who's kid is the smartest or who can talk, count, walk first, etc. She described the kids who walk to the beat of a different drum as the "chosen ones." I liked that and also liked that my mother sounded a little like me. Michael and I have always been a little different. Lost in our own little world, consumed with each other's thoughts. Disgusted with society, people, government, the status quo. Admittedly, we have grown softer as we have gotten older, but the fire is still there. Lukas is a gift. Lukas ISN'T like every other child. He is stubborn and hard headed, independent, and there is a lot more going on his head than he expresses verbally. He is full of love and light and when he shows his love, you don't take it for granted because you know when the moment strikes and he hugs you, that he means it. I wouldn't want Lukas to be anything other than what he is. He is my son and he is AMAZING!
I'm so sorry I cried and was upset when I was told out of nowhere that my son has a developmental disorder that will affect him his entire life and that his future is unclear. I'm sorry I snapped at a cold psychologist who basically accused me of not caring about my son because I became overwhelmed and said "I can't handle this shit." Whatever. Let them walk on eggshells around me. All I ask for is some positivity, warmness, and a shoulder to cry on. I'm a nurse and that's what we do. I wasn't even a quarter as bad as some of the people I deal with on a regular basis! In fact, I think I was nice.
We are still in limbo with some things. We have increased Lukas' play therapy to twice a week. I am still waiting on a call from Occupational Therapy and from his new Speech Therapist. My friend here in town is a special education teacher and she has agreed to come and work with Lukas as his tutor. I also still want Lukas to go to his preschool when they start up again for the school year. He loved school last year and I think it is important for him to be around other children. I am scared they are going to say they won't take Lukas. I know this won't happen, but I worry about him being the only kid who isn't "neurotypical." Will they provide him a little extra attention?
Last year, the teacher's had sippy cups they used for the class. I told them that Lukas was unable to drink out of those cups and they agreed to let me bring his straw cup. I noticed once when we went on a fieldtrip that they packed the sippies, but not his straw cup. They said they had been giving him the other cup and sometimes he would drink out of it. I call bs. I didn't make a stink, though. They handed him the cup on the field trip and of course, he didn't take it and drank nothing while the other kids drank their juice. The other kids munched down their snack also, while of course, Lukas wouldn't eat it. Sigh.
My mother was expressing her disgust the other day about how nowadays people just want everyone, especially kids, to be "little tin soldiers." Exactly the same. We instantly stamp the label on anyone who is "different" or "quirky." Mothers sit around and compare and see who's kid is the smartest or who can talk, count, walk first, etc. She described the kids who walk to the beat of a different drum as the "chosen ones." I liked that and also liked that my mother sounded a little like me. Michael and I have always been a little different. Lost in our own little world, consumed with each other's thoughts. Disgusted with society, people, government, the status quo. Admittedly, we have grown softer as we have gotten older, but the fire is still there. Lukas is a gift. Lukas ISN'T like every other child. He is stubborn and hard headed, independent, and there is a lot more going on his head than he expresses verbally. He is full of love and light and when he shows his love, you don't take it for granted because you know when the moment strikes and he hugs you, that he means it. I wouldn't want Lukas to be anything other than what he is. He is my son and he is AMAZING!
Tuesday, July 10, 2012
Catching up
Lukas hit all of his "baby" milestones on time. He was sweet and cuddly, but also had a stubborn side. I remember my dad calling him an "ornery little shit." I always thought he was more difficult then other babies I met and wondered how these moms who got so frustrated by the smallest things got off so easy. Your kid woke up crying a few times this week? Really? Mine nurses 10-12 times a night! And yeah, I still have to get up and go to work part-time. We started co-sleeping at 7 months exclusively. It made life easier and although all the medical information warns against this, it felt natural and right and was the way moms nurtured their babies since the begining of time. I was always nervous when I slipped up and said that was how we slept because of the judgement of other people. Fortunately, at this point in the game I don't care what other parents think about my parenting decisions. Once you get use to being a mom, it all falls into place. What works for some moms doesn't work for others.
At Lukas' 15 month well check the Dr. told me he was concerned that Lukas wasn't using any words yet. I was taken aback. He suggested Early Intervention, a state funded program that offers therapy services for kids under three on a sliding scale fee. We agreed to wait until 18 months, but at 18 months his only word was, "shoes." So while my friend's kids were flyng by and their mom's were telling me all the amazing things their kids were starting to say, mine was silent. We set up the early intervention evaluation.
The evaulation was three different women, one of which who struck me as cold and uncaring. I had a hard time watching them evaluate and "judge" my son. I had long since taken all the books that told me what a child is "supposed" to do by certain ages and packed them away. Comments like, "He sure doesn't seem to pay attention to language" killed me. I finally broke down crying. How terrible to sit and listen to these three women analyze the love of my life's every single move. Anyway, it was determined that Lukas had a moderate to severe speech delay and he would be starting speech therapy as well as play therapy. My kid needs therapy! It was hard to fathom. I was told that speech delays are common and that he will catch up. Even the Dr. said this. Prognosis good. Nothing wrong.
Fast foward to the present. Lukas is getting his 2nd developmental assessment. I think he is doing great. He's using some words during the assessment, interacting, and doing well on all the tests that are "visual." Then the cold lady from the last assessment pulls out the old MCHAT which is a quiz that evalautes for autism. She starts asking the questions and saying comments like, "his eye contact is fleeting." "He doesn't follow commands" "He doesn't interact on an age appropriate level." I lost it. I know where this bitch is going. I stand up and say, "I can't take this shit!" with tears in my eyes. She says, "Excuse me, this is your son, you'd think you'd WANT to know these things about him." I lost it. I told her of course, but she is overwhelming and scaring me. I told her I was a nurse and I have to deal when patients get upset and continue to be nice and so could she. She backed down, but she told me flat out, "Your son has autism."
My whole body went numb. I saw tunnel vision. I couldn't answer questions. I cried and cried. I asked why nobody else on his "team" thought so, including his Dr. She went on to explain that she has been doing this 20 years and knows what she is doing. The rest is a blur. I was handed a pamphlet. She said she could officially diagnose him today. I said no. That I want second and third opinions. She mentioned Temple Grandin. I told her that freaked me out, too. Yes, she's a success story, but I said she's a freak! I said, is my kid always going to be weird, and her response was a sympathetic, "yes."
At Lukas' 15 month well check the Dr. told me he was concerned that Lukas wasn't using any words yet. I was taken aback. He suggested Early Intervention, a state funded program that offers therapy services for kids under three on a sliding scale fee. We agreed to wait until 18 months, but at 18 months his only word was, "shoes." So while my friend's kids were flyng by and their mom's were telling me all the amazing things their kids were starting to say, mine was silent. We set up the early intervention evaluation.
The evaulation was three different women, one of which who struck me as cold and uncaring. I had a hard time watching them evaluate and "judge" my son. I had long since taken all the books that told me what a child is "supposed" to do by certain ages and packed them away. Comments like, "He sure doesn't seem to pay attention to language" killed me. I finally broke down crying. How terrible to sit and listen to these three women analyze the love of my life's every single move. Anyway, it was determined that Lukas had a moderate to severe speech delay and he would be starting speech therapy as well as play therapy. My kid needs therapy! It was hard to fathom. I was told that speech delays are common and that he will catch up. Even the Dr. said this. Prognosis good. Nothing wrong.
Fast foward to the present. Lukas is getting his 2nd developmental assessment. I think he is doing great. He's using some words during the assessment, interacting, and doing well on all the tests that are "visual." Then the cold lady from the last assessment pulls out the old MCHAT which is a quiz that evalautes for autism. She starts asking the questions and saying comments like, "his eye contact is fleeting." "He doesn't follow commands" "He doesn't interact on an age appropriate level." I lost it. I know where this bitch is going. I stand up and say, "I can't take this shit!" with tears in my eyes. She says, "Excuse me, this is your son, you'd think you'd WANT to know these things about him." I lost it. I told her of course, but she is overwhelming and scaring me. I told her I was a nurse and I have to deal when patients get upset and continue to be nice and so could she. She backed down, but she told me flat out, "Your son has autism."
My whole body went numb. I saw tunnel vision. I couldn't answer questions. I cried and cried. I asked why nobody else on his "team" thought so, including his Dr. She went on to explain that she has been doing this 20 years and knows what she is doing. The rest is a blur. I was handed a pamphlet. She said she could officially diagnose him today. I said no. That I want second and third opinions. She mentioned Temple Grandin. I told her that freaked me out, too. Yes, she's a success story, but I said she's a freak! I said, is my kid always going to be weird, and her response was a sympathetic, "yes."
Monday, July 9, 2012
Screw Autism D-Day
Lukas was a carefully planned baby. I wanted everything in order for when we finally decided to have a child. We had moved to NC, bought a house, had stable jobs, a little money saved and had been married for four years. The timing was ideal and we were ready and so excited. The night I got my positive pregnancy test Michael was volunteering at WNCW, a local radio station that plays an eclectic mix of music. I drove down to the studio, showed him the test and he lifted me up and spun me around in circles. I was so thrilled I had brought my dog Ernie and we ran around the studio screaming and laughing in the late hours, with Ernie running along with us.
My pregnancy wasn't a fun one. I really wanted it to be, but the 24/7 nausea and vomiting multiple times daily never let up. The extreme constipation, the hemmroids, the terrible acne, the swelling, the inability to enjoy food at all, the sciatica, the swelling, the bleeding, the borderline gestational diabetes, the sometimes too high blood pressure, the early contractions and the working fulltime up until I burst was NOT fun. Literally, I worked the 3-11 shift April 17th, 2010 and went into labor around 6AM the next morning. I got up to use the bathroom and went to get into bed and gush. My water broke. Oh shit, I think. It's not time yet. I'm still in my 35th week! Did I piss my pants? I walk to wake up Michael. I am numb and the water keeps dripping. I say we have to go to the hospital. I call my parents and they come, too. The nurse says, "let's hope it wasn't your water breaking. You're too early." Fear. Is my son going to be able to breath on his own? Is he going to get airlifted? The Dr. checks and says, "Yep, it's a positive. You're 4 cm dilated. Let's get that baby out of you." I say, "what?" He says, "let's get the pitocin started." I told him no, that I didn't want pitocin. He looked offended and told me that if I didn't take the pitocin I would probably give birth overnight and no one would be there to deliver my baby. Really, asshole? Babies have to be born during business hours? Without going into details, Lukas was born at 1:23 PM that afternoon while earlier asshole Dr. was at his son's soccer game. I lucked out and got a wonderful Dr. who was so kind and gentle and really treated the situation like it was a miracle. Lukas popped out and he didn't cry. I was terrfied, but he was breathing, 6lbs 1oz and the most beautiful little guy I had ever seen.
The hospital stay was a blur. I did not bounce back quickly. Lukas had latching issues. I didn't sleep for 36 hours. Family in and out. It honesty, it sucked. I remember coming home and we all finally got to lay down and go to sleep. We were home. Finally. It was time to get our new life started. I couldn't wait.
My pregnancy wasn't a fun one. I really wanted it to be, but the 24/7 nausea and vomiting multiple times daily never let up. The extreme constipation, the hemmroids, the terrible acne, the swelling, the inability to enjoy food at all, the sciatica, the swelling, the bleeding, the borderline gestational diabetes, the sometimes too high blood pressure, the early contractions and the working fulltime up until I burst was NOT fun. Literally, I worked the 3-11 shift April 17th, 2010 and went into labor around 6AM the next morning. I got up to use the bathroom and went to get into bed and gush. My water broke. Oh shit, I think. It's not time yet. I'm still in my 35th week! Did I piss my pants? I walk to wake up Michael. I am numb and the water keeps dripping. I say we have to go to the hospital. I call my parents and they come, too. The nurse says, "let's hope it wasn't your water breaking. You're too early." Fear. Is my son going to be able to breath on his own? Is he going to get airlifted? The Dr. checks and says, "Yep, it's a positive. You're 4 cm dilated. Let's get that baby out of you." I say, "what?" He says, "let's get the pitocin started." I told him no, that I didn't want pitocin. He looked offended and told me that if I didn't take the pitocin I would probably give birth overnight and no one would be there to deliver my baby. Really, asshole? Babies have to be born during business hours? Without going into details, Lukas was born at 1:23 PM that afternoon while earlier asshole Dr. was at his son's soccer game. I lucked out and got a wonderful Dr. who was so kind and gentle and really treated the situation like it was a miracle. Lukas popped out and he didn't cry. I was terrfied, but he was breathing, 6lbs 1oz and the most beautiful little guy I had ever seen.
The hospital stay was a blur. I did not bounce back quickly. Lukas had latching issues. I didn't sleep for 36 hours. Family in and out. It honesty, it sucked. I remember coming home and we all finally got to lay down and go to sleep. We were home. Finally. It was time to get our new life started. I couldn't wait.
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