This is something I never thought I would face. I assumed that the world around us was at least knowledgeable to know that Autism is a developmental disorder. I especially never thought that I would encounter this with medical professionals.
This all started a couple of months back. It doesn't seem that long, but I guess ,in a sleep-deprived state, one tends to lose track of time. My boy isn't sleeping. By "isn't sleeping" I mean were getting a few hours a night with no nap about 99.5% of the time. He gets to sleep just fine. He cannot stay that way for long. I have tried everything, save for a weighted blanket which I will be hopefully making this weekend.
So today, I put in a call to his pediatrician hoping that they could give us a little something to get his body reset. It was a last resort because I don't WANT to medicate him, but this is beginning to affect his quality of life. He will barely participate in therapy because of being so cranky. He walks around angry with the world all day long. He is just exhausted. So is everyone else in the house. Its starting to take it's toll on everyone.
After waiting on hold for an ungodly amount of time, we finally reached the appointments line. The conversation goes a little like this.......
Receptionist: Thank you for calling JCC. Who are we making an appointment for?
Me: Henry V....
Receptionist: And what does he need to be seen for today?
Me: He is having some sleep issues, which I know are common with Autism, so I would like to talk with Dr. E** to see if we can come up with a solution. I don't mind having to wait a bit for an appointment because I only want him to see her.
Receptionist: Hold *phone transfers*
New Receptionist: Thank you for calling JCC. Who are we making an appointment for today?
Me: Which clinic is this?
New Receptionist: The sick clinic.
Me: My son isn't sick. He does have Autism and we are having some issues that I would like to speak with his doctor about.
New Receptionist: If its dealing with his Autism, then he is sick. He has to be seen at the sick clinic.
Me: *at this point I am a little bit taken aback* You're kidding me right? He ISN'T sick.
New Receptionist: YES he is. He has Autism. He has to be seen at our sick clinic or not at all.
Me: What about the risk of him catching the flu or this awful stomach bug going around? I caught it 2 weeks ago from being in your office (yes, my insurance assigned me to a pediatrician...whole 'nother story there).
New Receptionist: Thats a risk you'll have to take if you want to see the doctor regarding sleep issues.
Me: No it isn't. Have his records for me within 48 hours and charge his account out of your office because we will be finding a new doctor.
___________________________________________________
This is the same office that ordered a skull x-ray instead of a MRI like the pediatric neurosurgeon suggested we have done at 2 years. Within 30 minutes, he had a new doctor and hopefully tomorrow, making an appointment won't be so hard. I will switch again and again until we get what we need.
Really though. Who in their right mind calls a kid sick simply because they have Autism? IT IS NOT AN ILLNESS. I honestly wonder by the tone of this woman's voice, if she thought she could catch it from him!
I ended all of this in tears, with a sweet boy who was actually napping for the first time in months. His tudor (which I hope to write about this weekend) had managed to get him to fall asleep because even though therapy is 3 hours, he was so exhausted that she wasn't getting anywhere with him anyway. Can she just move in with us?
This is not something that parents should have to deal with. Not in this day in time.
Friday, February 11, 2011
Wednesday, January 19, 2011
Transitions
Here we go! It is past time to transition Henry from the crib over to the big boy bed. Yep, we have been here before. He slept really well in his firetruck. Mommy got an awesome deal on it, and he loved it! Then, he learned a new skill. Opening doors. Once he figured that out, he wouldn't stay in bed. I gave up and put him back in the crib. He can climb out of it if he wants, but at night, he never does.
I think it may be a comfort thing. Maybe he likes the feeling of being closed in by the crib. Protected by it even. Maybe it keeps the bad things out for him. He has, in the past week, slept in the toddler bed once. I had to lay with him until he went to sleep. I won't complain about the sweet snuggles. :) Sometime through the night though, he climbed into his crib, but only after dragging his arsenal of sleep equipment and getting it in there somehow.
Sleep equipment: pillow, fringed blanket laid against left side of the body, sock monkey in the crease of the left elbow, cup in left hand, Daddy doll in crease of right elbow, and "the cowboy blanket" laying on top. The cowboy blanket is a hideous wool blanket that belonged to his Daddy. Its heavy and I assume that is what he likes about it.
I gave up and just started putting him in the crib again. I can no longer do this, as he is beginning to break it apart again. Theres probably something dangerous about him handing me a giant screw in the morning. I'm sure thats what the CPSC would say.
I will start by laying with him until he falls asleep. Gently getting him more used to it. Hopefully he will only climb to the (un)safety of his crib a few more nights. By next week I hope to have the crib completely out of his bedroom and replaced with another toddler bed. I will keep 2 in there so that he can move at night if he feels the need.
This is the most gentle way of forcing him into a bed that I can figure out in my mind.
My ultimate goal will be to get him and sister to share a room. Baby steps, mama. Baby steps.
Night 1 (because in case you haven't noticed, I blog before bed at night and just publish the next day): It was horrible. But, we'll keep trying!!!
I think it may be a comfort thing. Maybe he likes the feeling of being closed in by the crib. Protected by it even. Maybe it keeps the bad things out for him. He has, in the past week, slept in the toddler bed once. I had to lay with him until he went to sleep. I won't complain about the sweet snuggles. :) Sometime through the night though, he climbed into his crib, but only after dragging his arsenal of sleep equipment and getting it in there somehow.
Sleep equipment: pillow, fringed blanket laid against left side of the body, sock monkey in the crease of the left elbow, cup in left hand, Daddy doll in crease of right elbow, and "the cowboy blanket" laying on top. The cowboy blanket is a hideous wool blanket that belonged to his Daddy. Its heavy and I assume that is what he likes about it.
I gave up and just started putting him in the crib again. I can no longer do this, as he is beginning to break it apart again. Theres probably something dangerous about him handing me a giant screw in the morning. I'm sure thats what the CPSC would say.
I will start by laying with him until he falls asleep. Gently getting him more used to it. Hopefully he will only climb to the (un)safety of his crib a few more nights. By next week I hope to have the crib completely out of his bedroom and replaced with another toddler bed. I will keep 2 in there so that he can move at night if he feels the need.
This is the most gentle way of forcing him into a bed that I can figure out in my mind.
My ultimate goal will be to get him and sister to share a room. Baby steps, mama. Baby steps.
Night 1 (because in case you haven't noticed, I blog before bed at night and just publish the next day): It was horrible. But, we'll keep trying!!!
Tuesday, January 18, 2011
Judge Judy has nothin' on Mamas....
I have a lot of friends with children. Who am I kidding? I have maybe two friends that don't and that is only because one of them is a couple still expecting and another is a couple who has fertility issues. I'm often bombarded with emails, text messages, and the obligatory Facebook post about what wonderful things their children are doing today. I need to do this. I need to make it a point to share one new thing that my kids do every, single, day. I don't do it often enough. It is now a challenge to myself at before I sleep at night, to think of one good thing that each of my children did to make my day brighter.
Amazingly, this is now being mocked in the blogging world and Facebook alike. I feel like its becoming a bad thing to share milestones, and don't dare say that you are "blessed" because then you're a liar who pretends that nothing is wrong in life. Perhaps those people just don't want to share the "wrong", but instead of people thinking of it that way, they see it as someone's attempt at making life look perfect. So am I now supposed to post all of the crap things that happen in our house daily? My friends, I would clog your news feed and RSS like a barracks toilet on Mexican night at the chow hall. Want me to post only the good? I hate to say it, but on some days, I get in my slump and I see no good going on. OHHHH, you want a nice, politically-correct, mixture of the good and bad of life!! I get it!
Heres the thing about blogging. Your blog is YOURS. You post the good, you post the bad, you post them both and there you have.....I'll stop myself from breaking out into song here. Some people only post the good. On the contrary, in blogging and on Facebook, some people only post the bad. I find though, that I have those people on my news feed or my followed blogs for a reason. I am intrigued.
What I'm saying is that if someone wants to post their Happy McHappyFace all day, everyday, why are other mamas complaining about it? I assure you, they have bad in their life. They just don't share it with the world. And if that gives other mamas some sort of false sense about the blogger's life and their own, then so be it. We can't save 'em all. There are a few, well-loved by many thousands of people blogs out there, that I cannot stand to read. So, I don't read them. Don't read it if it the only emotion you get out of it is anger towards the person and their so-called perfection. We all know its a dream world, but hey....if I'm having a dream world kind of day, no one better burst my bubble. If you don't like someone's happy, don't taint it with your sad or angry.
I will continue to blog our days. Good days, bad days, whatever I feel like posting that day. Mostly good. Because I am blessed. I owe all of our days to God. When need be, I will praise him. I will even *gasp* praise him publicly. There are joys with Autism, not just the horrible things that people read and hear. My ability to see those joys are what makes me blessed. I'm praying that He will help me find the ability to share ALL of the good that Autism has brought into our lives.
Unless there is something that can actually be done to help out a fellow mama, why are we judging each other so harsly? We must be the warriors that we want to be in our child's life, whether they have special needs or not. We must show them that we will not make fun of others for any reason. Whether it be a false sense of what reality is or the doom and gloom kind of human. We must be the example of what we want them to become.
Amazingly, this is now being mocked in the blogging world and Facebook alike. I feel like its becoming a bad thing to share milestones, and don't dare say that you are "blessed" because then you're a liar who pretends that nothing is wrong in life. Perhaps those people just don't want to share the "wrong", but instead of people thinking of it that way, they see it as someone's attempt at making life look perfect. So am I now supposed to post all of the crap things that happen in our house daily? My friends, I would clog your news feed and RSS like a barracks toilet on Mexican night at the chow hall. Want me to post only the good? I hate to say it, but on some days, I get in my slump and I see no good going on. OHHHH, you want a nice, politically-correct, mixture of the good and bad of life!! I get it!
Heres the thing about blogging. Your blog is YOURS. You post the good, you post the bad, you post them both and there you have.....I'll stop myself from breaking out into song here. Some people only post the good. On the contrary, in blogging and on Facebook, some people only post the bad. I find though, that I have those people on my news feed or my followed blogs for a reason. I am intrigued.
What I'm saying is that if someone wants to post their Happy McHappyFace all day, everyday, why are other mamas complaining about it? I assure you, they have bad in their life. They just don't share it with the world. And if that gives other mamas some sort of false sense about the blogger's life and their own, then so be it. We can't save 'em all. There are a few, well-loved by many thousands of people blogs out there, that I cannot stand to read. So, I don't read them. Don't read it if it the only emotion you get out of it is anger towards the person and their so-called perfection. We all know its a dream world, but hey....if I'm having a dream world kind of day, no one better burst my bubble. If you don't like someone's happy, don't taint it with your sad or angry.
I will continue to blog our days. Good days, bad days, whatever I feel like posting that day. Mostly good. Because I am blessed. I owe all of our days to God. When need be, I will praise him. I will even *gasp* praise him publicly. There are joys with Autism, not just the horrible things that people read and hear. My ability to see those joys are what makes me blessed. I'm praying that He will help me find the ability to share ALL of the good that Autism has brought into our lives.
Unless there is something that can actually be done to help out a fellow mama, why are we judging each other so harsly? We must be the warriors that we want to be in our child's life, whether they have special needs or not. We must show them that we will not make fun of others for any reason. Whether it be a false sense of what reality is or the doom and gloom kind of human. We must be the example of what we want them to become.
Subscribe to:
Posts (Atom)
