We decided to try a fish oil supplement to help Roman's communication skills. It's really supposed to help. I'm pacing the house waiting for the UPS man. The stuff comes highly recommended by other moms with kids on the autism spectrum. Anything that even holds a promise of helping is worth it in my opinion.
Roman's home visit today was not fun. He wanted to just lay there and stare off into space. His teacher seems to think he may be having seizures and that's why he just stares blankly. He does it often. I read that 30% of kids with autism also have seizures. I don't know what to think of that. I don't want my baby to have seizures. I don't want my baby to have autism. I realize there are some things that are totally beyond control, but I want to know why.
Why?
That's my question lately. Why are there so many kids with autism? There has to be a reason. I'm not sure if I buy the vaccination theory. Roman was delayed in all of his shots. He didn't have his MMR until he was 2 and he was already exhibiting the symptoms of autism long before that.
Was it something I did?
What if my medications had something to do with it? Is it because he didn't get enough breastmilk before he went to formula? Is it because he was born early? All those things could be my fault. If I wasn't bipolar I wouldn't have to have had the meds. Could I have lived without them while I was pregnant? Maybe I didn't try hard enough to breastfeed. If I wasn't so overweight when I was pregnant, maybe I wouldn't have had the blood pressure issues that caused him to be born before 36 weeks. Maybe his prematurity contributed to autism.
I realize I want to blame myself. I want to blame someone and I'm the best scapegoat. I know in raising Tycen that I blamed myself for his NF, too. I was, and maybe am, convinced that it was my faulty egg that had the screwy chromosome that made him develop NF.
This kind of thinking is crazy and self punishing for no reason, somewhere deep down I know that. My mother thinks the reason I have my two very special boys is so I can do something great to raise awareness of NF and autism. I would like to believe that, but right now, I'm just feeling like an overwhelmed parent. It takes all I have to get through the days, playing Roman's specially designed educational games, giving what attention I have to give to Tanis, dealing with Tycen and Tan's fighting when he gets home from school. How is there anything left of me to give to these causes? I want to, I just don't know how.
Thursday, January 28, 2010
Wednesday, January 27, 2010
Our pediatrician sucks
I'm pissed. I had already decided to change pediatricians a few weeks ago, but the old one has maddened me once again. First of all, they missed Tycen's diagnosis of NF. Thank God I had watched that Discovery Health program on it when I was pregnant. For some reason, that show raised a bubble of dread in my throat. It was as if my soul knew the baby I was carrying had NF. Then, the spots showed up. The cafe au lait spots are the first sign of NF. I had to point out each and every one of them before the pediatrician gave us a referral to a geneticist. I had to do the research on my own to find out NF clinic and support group. I could never explain in words how helpful they have been in our journey.
Then, they totally brushed off my concerns about Roman's development. "All kids develop at different rates. He seems completely normal to me," they promised me since he was 18 months old. Thanks for nothing.
Monday, first thing in the morning, I called them to make a referral for Roman to see a specialist to officially diagnose the autism. Have I received a call back yet? Nope. How long does it take to make an ever-loving phone call people. Every day is another day lost in Roman's world. I wish doctors would understand that.
To top it off, when I called, the receptionist asked me in a haughty tone, "And who suggested that you need a specialist. What makes you think he has autism?"
First off, your condescending tone had me reaching to make another phone call. I immediately called a pediatrician I had been recommended by another NF mom. The first thing I asked was how experienced the new doctor was with autism. "We have several patients with autism and the doc is very open to all therapies available to help lessen the effects of it."
Perfect. Not only does she have at least one other NF patient, like Tycen, but I heard just what I wanted to about treating autism. Even without an official meeting, I know I've found someone I'll like. I can't wait.
But, alas, I do have to wait. I'm waiting on our old pediatrician to make the referral to a pediatric neurologist and psychiatrist to make an official diagnosis. I need this desperately so we can get Roman into a DAN! doctor. DAN! stands for Defeat Autism Now! and is an alternative treatment course for autism. I told you I was going to do anything it takes.
Then, they totally brushed off my concerns about Roman's development. "All kids develop at different rates. He seems completely normal to me," they promised me since he was 18 months old. Thanks for nothing.
Monday, first thing in the morning, I called them to make a referral for Roman to see a specialist to officially diagnose the autism. Have I received a call back yet? Nope. How long does it take to make an ever-loving phone call people. Every day is another day lost in Roman's world. I wish doctors would understand that.
To top it off, when I called, the receptionist asked me in a haughty tone, "And who suggested that you need a specialist. What makes you think he has autism?"
First off, your condescending tone had me reaching to make another phone call. I immediately called a pediatrician I had been recommended by another NF mom. The first thing I asked was how experienced the new doctor was with autism. "We have several patients with autism and the doc is very open to all therapies available to help lessen the effects of it."
Perfect. Not only does she have at least one other NF patient, like Tycen, but I heard just what I wanted to about treating autism. Even without an official meeting, I know I've found someone I'll like. I can't wait.
But, alas, I do have to wait. I'm waiting on our old pediatrician to make the referral to a pediatric neurologist and psychiatrist to make an official diagnosis. I need this desperately so we can get Roman into a DAN! doctor. DAN! stands for Defeat Autism Now! and is an alternative treatment course for autism. I told you I was going to do anything it takes.
Tuesday, January 26, 2010
The Fixer
When somethings broke, I wanna put a bit of fixin on it
When somethings bored, I wanna put a little exciting on it
If somethings low, I wanna put a little high on it
When somethings lost, I wanna fight to get it back again
When somethings bored, I wanna put a little exciting on it
If somethings low, I wanna put a little high on it
When somethings lost, I wanna fight to get it back again
Pearl Jam, The Fixer
That's me. I'm the Fixer. I always want to make things right. And now, I've been given two boys who will (and have) tested my abilities in that respect.
I've learned that you can't fix NF. Tycen will always have NF. It's not going away. So, we fix what we can. Tycen can now walk so much better with his surgeries and new braces. He'll have another surgery soon to slow the growth in his long leg. We're doing the best we can to fix it.
Tycen's Asperger's was another hurdle placed right in the middle of our run of parenting a child with NF. I was fortunate that the main fix for that was to send his to preschool. We lucked out.
His tumor is growing. There's a fix for that too. Someday, we'll have it removed.
Now that my insatiable need to fix is being tested by Roman. When he was almost two, I decided to call Early On, which is an early intervention program for developmental delays. he wasn't talking at all. I was sure that was the extent of his problems. It was an easy fix. He just needed help to start talking.
The evaluation was thorough. I was being hit by questions that I didn't think had anything to do with him talking.
Does he flap his arms like that a lot?
Does he avoid eye contact like that most of the time?
Does he always put things in his mouth like that?
Does he walk on his tiptoes like that sometimes?
Yeah, sure, uh-huh and yup. I headed to the computer to research what seemed like odd questions to me. One word jumped off that screen and into my brain: AUTISM.
My child have autism? At first, I was in denial. There was no way my sweet little man could have autism. He met his big milestones in the first year right on time. Searching deeper into the recesses of my brain, I realized, while that first year was normal, everything that came later was delayed. It wasn't just his speech. He lost his ability to talk. He use to say words, now he's limited to "mamamamamama" and "dadadadadadada". He never had interest in toys beyond those designed for babies. And of course, he did flap his arms, he did avoid eye contact, he did put everything in his mouth and he did walk on his tiptoes a lot.
Autism. You can't fix that. Or can you? I started reading a few books that told me you could. We've started with a special diet and soon we'll start a fish oil supplement that's supposed to increase speech and communication. We'll go see every specialist out there until I find a way to break Roman out of the cage of autism. We're going to fix this. I know we are.
I've learned that you can't fix NF. Tycen will always have NF. It's not going away. So, we fix what we can. Tycen can now walk so much better with his surgeries and new braces. He'll have another surgery soon to slow the growth in his long leg. We're doing the best we can to fix it.
Tycen's Asperger's was another hurdle placed right in the middle of our run of parenting a child with NF. I was fortunate that the main fix for that was to send his to preschool. We lucked out.
His tumor is growing. There's a fix for that too. Someday, we'll have it removed.
Now that my insatiable need to fix is being tested by Roman. When he was almost two, I decided to call Early On, which is an early intervention program for developmental delays. he wasn't talking at all. I was sure that was the extent of his problems. It was an easy fix. He just needed help to start talking.
The evaluation was thorough. I was being hit by questions that I didn't think had anything to do with him talking.
Does he flap his arms like that a lot?
Does he avoid eye contact like that most of the time?
Does he always put things in his mouth like that?
Does he walk on his tiptoes like that sometimes?
Yeah, sure, uh-huh and yup. I headed to the computer to research what seemed like odd questions to me. One word jumped off that screen and into my brain: AUTISM.
My child have autism? At first, I was in denial. There was no way my sweet little man could have autism. He met his big milestones in the first year right on time. Searching deeper into the recesses of my brain, I realized, while that first year was normal, everything that came later was delayed. It wasn't just his speech. He lost his ability to talk. He use to say words, now he's limited to "mamamamamama" and "dadadadadadada". He never had interest in toys beyond those designed for babies. And of course, he did flap his arms, he did avoid eye contact, he did put everything in his mouth and he did walk on his tiptoes a lot.
Autism. You can't fix that. Or can you? I started reading a few books that told me you could. We've started with a special diet and soon we'll start a fish oil supplement that's supposed to increase speech and communication. We'll go see every specialist out there until I find a way to break Roman out of the cage of autism. We're going to fix this. I know we are.
Time to start blogging again
I have decided to start blogging again. It's not a good day for it, but when I make up my mind, I make up my mind.
Tycen is home from school today. He said he was sick and wanted to stay home. He never makes such a request, so I thought he was really sick. Apparently he's not sick enough to get along with his sister.
Roman is a handful lately. I plan to make a post on that shortly.
Tycen is home from school today. He said he was sick and wanted to stay home. He never makes such a request, so I thought he was really sick. Apparently he's not sick enough to get along with his sister.
Roman is a handful lately. I plan to make a post on that shortly.
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