Alden has been acting different lately, he is more hyper & eating everything. I think it's a combination of weather and a growth spurt. He's been a bit bonkers though so I hope whatever it is it's temporary.
We have our appointment with a nutritionist this Tuesday. We've been waiting 3 months so I'm pretty excited about it. I can't wait to get tests run and his diet & general health straightened out.
I didn't update this week because it's been really stressful. Everything is okay now but the beginning of the week was pretty much horrid.
Jan 31, 2010
Jan 21, 2010
oh brother
Facebook statuses are typically stupid & nothing to get annoyed about but this one irked me a bit.
First off, some children with diseases ARE disabled, and some children with disabilities do suffer from diseases, so that statement is a bit broad.
"Children with disabilities are not looking for a cure?"
Anyone want to tell that to the people working their asses off to find help for these kids? Or the parents who are spending thousands of dollars to recover their children? I wouldn't want to be the one to do it. The children aren't looking for a cure! Who knew?
They are searching for acceptance? That's crazy! You mean to tell me that disabled people are like everyone else and want to be accepted?
The rest of the status speaks for itself, some stupid stats someone pulled out of their ass.
My wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE........93% of people won't copy and paste this, WILL YOU be one of the 7% that does............... and make this your status for at least an hour and 12 minutes.
First off, some children with diseases ARE disabled, and some children with disabilities do suffer from diseases, so that statement is a bit broad.
"Children with disabilities are not looking for a cure?"
Anyone want to tell that to the people working their asses off to find help for these kids? Or the parents who are spending thousands of dollars to recover their children? I wouldn't want to be the one to do it. The children aren't looking for a cure! Who knew?
They are searching for acceptance? That's crazy! You mean to tell me that disabled people are like everyone else and want to be accepted?
The rest of the status speaks for itself, some stupid stats someone pulled out of their ass.
Jan 19, 2010
Jan 17, 2010
won't you please, please, help me?
It makes me sad that the autism community is so divided. I realize that each side has their opinions and theories to back it up, but I think a lot of the time the mudslinging gets in the way of helping the kids. The main problem being, parents can't get help because their pediatrician is on Team A but they are leaning toward Team B. I think that pediatricians should listen to parents, and address their concerns. If they want their child tested for something, the doctor should run the test, why do they care if the parents waste their money on 'crazy theories'? In the end if it helps the child then that's wonderful, if it doesn't then the doctor has done what they can to appease the parents and they can say "I told you so" and go about their day. What is the harm in that? Seriously, if anyone knows what these doctors are so afraid of then please tell me.
Jan 15, 2010
IEPs & MB12
It's report card time! Alden's second Kindergarten report card came today. He is in a self contained classroom and it contains only children who have autism spectrum disorders. These classes are designed so that these kids don't get lost in regular classes and also so they aren't taking away attention from children with more severe special needs who need more specialized attention.
If you don't have a child in the special education program you probably have no idea that 11 page report cards exist. They do! Our school gives a "regular" report card for English, Reading, Science, Social Studies, & Athletics. These are graded on an A-D scale. Alden has made As & Bs on both his "regular" report cards. These are required by the school because the children have to have number grades. The next 10 pages of the report card are his specific IEP (Individualed Education Program) goals. I am actually glad he gets this kind of report card since when I ask him what he did at school today he says "learn" or "sing" and never goes into any detail.
An IEP meeting takes place when your child joins a school program, the meeting is designed to set realistic & a few ongoing goals for the child to reach by the end of the year (or next meeting which is the end of that IEP). I was completely estatic today because Alden's report card says that he has accomplished all but one of his goals for specific tasks. The only ones that he is still "working on" are the ongoing Speech & OT goals. The one specific task he hasn't accomplished is rolling a car or a ball and they even said that he just flat out is not interested in either (which is true). I have a feeling if they gave him an action figure and told him to roll it down the hill away from enemies he'd have no problem rolling it. He has never really has much use for cars, rolling a ball *though he will throw one*, or stuffed animals.
We are so proud of him!
Another thing I want to mention is that I got a call from his teacher yesterday asking if he'd gotten into any food that wasn't on his safe list. I knew he hadn't but I remembered that we were out of MB12 and that last time we were out of it he was a bit all over the place pulling out every single book from the bookshelves and every toy out of every corner of the house. She clearly thought I was insane telling her that the absence of a vitamin would make him act that way but it's true. We ordered a 3 month supply this week so we shouldn't be running out for a longggg time. Anyway I thought it was nice to see that I wasn't the only one seeing a difference when he's off them. I never tell them when we're starting something new just to see if they mention progress and they had, and when it went away they even called. We're doing something right.
If you don't have a child in the special education program you probably have no idea that 11 page report cards exist. They do! Our school gives a "regular" report card for English, Reading, Science, Social Studies, & Athletics. These are graded on an A-D scale. Alden has made As & Bs on both his "regular" report cards. These are required by the school because the children have to have number grades. The next 10 pages of the report card are his specific IEP (Individualed Education Program) goals. I am actually glad he gets this kind of report card since when I ask him what he did at school today he says "learn" or "sing" and never goes into any detail.
An IEP meeting takes place when your child joins a school program, the meeting is designed to set realistic & a few ongoing goals for the child to reach by the end of the year (or next meeting which is the end of that IEP). I was completely estatic today because Alden's report card says that he has accomplished all but one of his goals for specific tasks. The only ones that he is still "working on" are the ongoing Speech & OT goals. The one specific task he hasn't accomplished is rolling a car or a ball and they even said that he just flat out is not interested in either (which is true). I have a feeling if they gave him an action figure and told him to roll it down the hill away from enemies he'd have no problem rolling it. He has never really has much use for cars, rolling a ball *though he will throw one*, or stuffed animals.
We are so proud of him!
Another thing I want to mention is that I got a call from his teacher yesterday asking if he'd gotten into any food that wasn't on his safe list. I knew he hadn't but I remembered that we were out of MB12 and that last time we were out of it he was a bit all over the place pulling out every single book from the bookshelves and every toy out of every corner of the house. She clearly thought I was insane telling her that the absence of a vitamin would make him act that way but it's true. We ordered a 3 month supply this week so we shouldn't be running out for a longggg time. Anyway I thought it was nice to see that I wasn't the only one seeing a difference when he's off them. I never tell them when we're starting something new just to see if they mention progress and they had, and when it went away they even called. We're doing something right.
Jan 12, 2010
gluten for punishment
As I mentioned earlier we are on the gluten free casein free diet. I first heard about the diet watching Jenny McCarthy on Oprah. I was skeptical but I was also exhausted. We were 2 months away from having our official diagnosis after a year of waiting lists for hearing, psychological, and speech assessment.
When I heard about the diet I thought "well if it does work then great, if it doesn't then we'll be exactly where we are right now so we might as well try it". I began researching about the gluten & casein free diet and found that absolutely everything Alden ate had at least one of them in it. I went to TACA (you can find a link in the sidebar) and hand-wrote three college ruled pages of safe foods, I also gave a copy to my in-laws since they are our sitters when we go out on the weekends. Luckily, our families were willing to go through the steps of eliminating gluten & casein from Alden's diet with us.
Armed with that info we went to Wal-Mart (we didn't have a health food store anywhere close by at the time) and stocked up on safe foods. We jumped in with both feet and pulled all the gluten & casein containing foods cold turkey. Within a week we were noticing small differences, within a few weeks other people were noticing. The changes in our case were rather drastic and immediate which was just proof that we were doing something right.
I know some people who have tried the diet with absolutely no success, I know others who have had minimal success, and luckily we were in the group that had major success with dietary intervention. The fact is that absolutely every child is different, and what works for one child isn't necessarily going to work for another.
A lot of people do have success with the diet, according to a report a few weeks ago 1 in 5 children on the spectrum are using some form of dietary intervention. The same report said there was no proof that the diet works. I say that numbers don't lie and it's obviously working for a lot of people. It's not like we don't have other things we need to spend our money on like speech, physical, and occupational therapy.
When I heard about the diet I thought "well if it does work then great, if it doesn't then we'll be exactly where we are right now so we might as well try it". I began researching about the gluten & casein free diet and found that absolutely everything Alden ate had at least one of them in it. I went to TACA (you can find a link in the sidebar) and hand-wrote three college ruled pages of safe foods, I also gave a copy to my in-laws since they are our sitters when we go out on the weekends. Luckily, our families were willing to go through the steps of eliminating gluten & casein from Alden's diet with us.
Armed with that info we went to Wal-Mart (we didn't have a health food store anywhere close by at the time) and stocked up on safe foods. We jumped in with both feet and pulled all the gluten & casein containing foods cold turkey. Within a week we were noticing small differences, within a few weeks other people were noticing. The changes in our case were rather drastic and immediate which was just proof that we were doing something right.
I know some people who have tried the diet with absolutely no success, I know others who have had minimal success, and luckily we were in the group that had major success with dietary intervention. The fact is that absolutely every child is different, and what works for one child isn't necessarily going to work for another.
A lot of people do have success with the diet, according to a report a few weeks ago 1 in 5 children on the spectrum are using some form of dietary intervention. The same report said there was no proof that the diet works. I say that numbers don't lie and it's obviously working for a lot of people. It's not like we don't have other things we need to spend our money on like speech, physical, and occupational therapy.
Jan 11, 2010
what do you do?...
When people ask me what I do for a living I tell them I'm a stay-at-home mom. This is followed by "Oh", 99% of the time. It's not a nice "oh" either, it's an "oh so you don't really do anything" kind of "oh". Which could not be further from the truth. Stay-at-home parents work hard, every single day. They don't get Saturday or Sunday off, they are stay at home parents 24/7. I feel sorry for people who look down on stay-at-home moms & dads because they are SO much more than that.
There is nothing shameful about not working outside the home. I consider myself a feminist and I thank those women who fought for our right to equality (though we aren't quite truly there yet) but sometimes I think people forgot they fought so we could work outside the home if we wanted to. Those women wanted us to have the option to work, but it seems almost as if it's turned into "if you don't work outside the home you aren't a feminist/independent/person of worth." It's not like we're sitting on our asses eating Bon-Bons watching Oprah...I mean really who likes Bon-Bons anyway?
So what does this have to do with autism? Everything. Stay-at-home parents of special needs children are NOT just stay-at-home parents. We are advocates, we are researchers, we are doctors, psychologists, nutritionists, pharmacists, and reporters. Those are things we do on a daily basis, along with the dishes, the laundry, the cleaning, & the meal planning. All while putting up with the meltdowns, shut downs, OCD, flare ups, die off, and infractions. Luckily, those go along with the good things, like the laughter, new words, losing symptoms, the healing, and watching the amazing things our kids do.
So the next time someone asks you what you do for a living respond with "everything".
There is nothing shameful about not working outside the home. I consider myself a feminist and I thank those women who fought for our right to equality (though we aren't quite truly there yet) but sometimes I think people forgot they fought so we could work outside the home if we wanted to. Those women wanted us to have the option to work, but it seems almost as if it's turned into "if you don't work outside the home you aren't a feminist/independent/person of worth." It's not like we're sitting on our asses eating Bon-Bons watching Oprah...I mean really who likes Bon-Bons anyway?
So what does this have to do with autism? Everything. Stay-at-home parents of special needs children are NOT just stay-at-home parents. We are advocates, we are researchers, we are doctors, psychologists, nutritionists, pharmacists, and reporters. Those are things we do on a daily basis, along with the dishes, the laundry, the cleaning, & the meal planning. All while putting up with the meltdowns, shut downs, OCD, flare ups, die off, and infractions. Luckily, those go along with the good things, like the laughter, new words, losing symptoms, the healing, and watching the amazing things our kids do.
So the next time someone asks you what you do for a living respond with "everything".
Jan 10, 2010
what's second nature to me might seem crazy to you
Here is a list of things I just realized most people don't have to worry about...
It seems kind of daunting to see all that but honestly I had forgotten any of this was weird until I read one someone's blog that she was exhausted from all the extra precautions they were having to take. We've only been GFCF for 2 and a half years and all of it just seems so second nature.
Washing hands after you eat.
Reading every single label on every single thing you bring home.
Letting kids play with Playdough, stickers, tape, paint & glue.
What the dishes, pots, & pans are made of.
What laundry detergent, soap, shampoo, lotion, & toothpaste are used.
Packing a sack lunch every time you leave the house or go to dinner.
Packing lunch for school everyday.
Your child sharing food with friends.
Your child not being allowed to eat cake & ice cream at birthday parties.
Whether or not the child took all of their supplements for the day.
What cleaning products are used. (though everyone REALLY should consider this it's not mandatory for most)
The noise level wherever you are.
What clothing, bedding, and shoes are made out of. (though everyone REALLY should consider this it's not mandatory for most)
Cross contamination in factories.
Gluten, casein, artificial color, artificial flavor, natural flavoring, phenols, salicylates,& preservatives.
It seems kind of daunting to see all that but honestly I had forgotten any of this was weird until I read one someone's blog that she was exhausted from all the extra precautions they were having to take. We've only been GFCF for 2 and a half years and all of it just seems so second nature.
Jan 9, 2010
1 in 91 kids, autism is everywhere...
Tonight at the videogame store we saw a little boy who was obviously on the autism spectrum. He reminded me of Alden before we started dietary intervention. I always want to talk to the parents of these kids and just say "I get it, here's my email address if you ever need to talk" but I never do. I don't want to come off as rude & make assumptions. I also don't want to be the first person to tell them that their child has autism. Can you imagine a stranger walking up to you in the store and diagnosing your child? How rude would that seem even if they were right? So I just stand there and smile & hope they know that I'm not judging them. I am them.
I hate Holland (the poem not the place)
There is a poem that at some point in your life someone will give you if you have a special needs child. It's called Welcome to Holland. I hate this poem, and not because it doesn't rhyme or use iambic pentameter. I hate this poem because people assume everyone with a special needs child feels this way...and I just don't. Maybe it's because Alden is high functioning, maybe it's because I'm insanely optimistic about his future, maybe I just don't "get it", I'm not sure, but I know that right now I hate that poem.
To me this poem says "I ordered a perfect child & I didn't get it, so I'll settle for this one because I have no other choice & I'll always be slightly bitter toward people with perfect children".
I NEVER expected a perfect child, all I cared about was that he was healthy & happy. We are working on the healthy part right now, but I can assure you that my child is happy, in fact "happy" was one of the first words he relearned, and it's probably his most used word.
I hate that my son has autism, I really wish for his sake that he didn't. This is not about me, this is about him. I don't feel sorry for myself, I don't feel angry, I don't feel bitter and jealous of parents with neurotypical children. I'm happy for them, I'm sure their kids are great, but mine is too. My child has learned to communicate without speaking, and that is pretty incredible. Every single person in this world is different, I think people forget that sometimes. Those normal kids people are envying have ADD or asthma or allergies or something else. Maybe they don't have any physical ailments, maybe they have depression, anxiety or something else. The point is why would you expect something that doesn't exist?
If you build up this imaginary day in your head, you will be disappointed. You might imagine a romantic dinner and dancing, but on the way out the door you're going to step in gum in your new pair of Louboutins. So many people imagine the perfect wedding day but something, even the most tiny thing is GOING to go wrong. It's just a fact. For me it was that I was having an anxiety attack & they tried to steal my chair for a guest. Someone else spilled red wine all over their dress, someone else's beautiful candle lighting photo came out with them looking completely cross eyed. We expect these little things day to day, why don't we realize that there are going to be some in the big picture too and some of them are going to be major.
In conclusion, I don't look down on people who do feel this way about their children, I feel badly for them. I hope they realize that even if they are "in Holland" that at least they had a safe plane ride & landing. That's really enough for me.
To me this poem says "I ordered a perfect child & I didn't get it, so I'll settle for this one because I have no other choice & I'll always be slightly bitter toward people with perfect children".
I NEVER expected a perfect child, all I cared about was that he was healthy & happy. We are working on the healthy part right now, but I can assure you that my child is happy, in fact "happy" was one of the first words he relearned, and it's probably his most used word.
I hate that my son has autism, I really wish for his sake that he didn't. This is not about me, this is about him. I don't feel sorry for myself, I don't feel angry, I don't feel bitter and jealous of parents with neurotypical children. I'm happy for them, I'm sure their kids are great, but mine is too. My child has learned to communicate without speaking, and that is pretty incredible. Every single person in this world is different, I think people forget that sometimes. Those normal kids people are envying have ADD or asthma or allergies or something else. Maybe they don't have any physical ailments, maybe they have depression, anxiety or something else. The point is why would you expect something that doesn't exist?
If you build up this imaginary day in your head, you will be disappointed. You might imagine a romantic dinner and dancing, but on the way out the door you're going to step in gum in your new pair of Louboutins. So many people imagine the perfect wedding day but something, even the most tiny thing is GOING to go wrong. It's just a fact. For me it was that I was having an anxiety attack & they tried to steal my chair for a guest. Someone else spilled red wine all over their dress, someone else's beautiful candle lighting photo came out with them looking completely cross eyed. We expect these little things day to day, why don't we realize that there are going to be some in the big picture too and some of them are going to be major.
In conclusion, I don't look down on people who do feel this way about their children, I feel badly for them. I hope they realize that even if they are "in Holland" that at least they had a safe plane ride & landing. That's really enough for me.
Jan 8, 2010
looking back
Hindsight is 20/20 and there are a million things I wish I'd known. These are a few of them...
That kid being a brat in the middle of the supermarket isn't necessarily a brat.
The mother dragging the kid out of the store kicking & screaming isn't necessarily a bad parent.
Meltdowns are serious, autistic children will self injure, scream, go completely dead weight or do numerous other things that are dangerous. When your child starts slamming their head into something repeatedly and they don't understand the concept of pain or the word "stop", you sometimes have to resort to physically removing them from the situation and it's never pretty. Not only are you terrified your child is going to permanently damage themselves you are being judged by strangers.
I wish I'd known about teaching babies sign language.
I feel like if I'd taught him ASL before he regressed he probably would have been able to better communicate his needs.
I wish I'd known about the diagnosis of PDD-NOS and how large the spectrum is.
I had looked into autism but Alden never seemed to "fit" all those things, he was cuddly, used facial expression, was empathetic, he wasn't sitting around staring out the window, he loved to play. Once we got the diagnosis I was sad because I felt like I'd let him down, I didn't want to have him tested because I didn't think he WAS on the spectrum. I will carry that with me the rest of my life.
I wish I'd trusted my instincts about certain vaccines.
I remember the day he got the MMR, I asked the doctor if that was 'the autism shot' and she told me that was complete crap & that there was no medical evidence supporting that theory. I also questioned the Chicken Pox shot I mean come on, chicken pox sucks but it's totally a right of passage of childhood. They told me he HAD to have it or he couldn't go to school. So again I relented and let them inject him full of toxins.
I also wish I'd known the rhogam shot I received when pregnant had thimerosal in it.
That kid being a brat in the middle of the supermarket isn't necessarily a brat.
The mother dragging the kid out of the store kicking & screaming isn't necessarily a bad parent.
Meltdowns are serious, autistic children will self injure, scream, go completely dead weight or do numerous other things that are dangerous. When your child starts slamming their head into something repeatedly and they don't understand the concept of pain or the word "stop", you sometimes have to resort to physically removing them from the situation and it's never pretty. Not only are you terrified your child is going to permanently damage themselves you are being judged by strangers.
I wish I'd known about teaching babies sign language.
I feel like if I'd taught him ASL before he regressed he probably would have been able to better communicate his needs.
I wish I'd known about the diagnosis of PDD-NOS and how large the spectrum is.
I had looked into autism but Alden never seemed to "fit" all those things, he was cuddly, used facial expression, was empathetic, he wasn't sitting around staring out the window, he loved to play. Once we got the diagnosis I was sad because I felt like I'd let him down, I didn't want to have him tested because I didn't think he WAS on the spectrum. I will carry that with me the rest of my life.
I wish I'd trusted my instincts about certain vaccines.
I remember the day he got the MMR, I asked the doctor if that was 'the autism shot' and she told me that was complete crap & that there was no medical evidence supporting that theory. I also questioned the Chicken Pox shot I mean come on, chicken pox sucks but it's totally a right of passage of childhood. They told me he HAD to have it or he couldn't go to school. So again I relented and let them inject him full of toxins.
I also wish I'd known the rhogam shot I received when pregnant had thimerosal in it.
***Side Note*** I do not think vaccines are solely responsible for Alden's autism, I think he had a pre-existing genetic vulnerability, and was exposed to toxins in the environment that made him vulnerable and the three of them together caused his specific case. I don't think we should eradicate vaccines but I do think they should take all the toxic chemicals out of them and only vaccinate for things that are serious. I AM NOT ANTI-VACCINE I am anti-toxin. I also wish doctors would tell parents you can spread the vaccines out instead of just giving the cocktails of vaccines.
an intro of sorts
I guess I should introduce myself in case anyone comes across this. My name is Jax, I'm 24 years old, I'm happily married & we have an incredible son.
Three years ago our son was diagnosed with PDD-NOS which means Pervasive Developmental Disorder Not Otherwise Specified. In layman's terms he has an autism spectrum disorder but doesn't fit enough diagnostic criteria to be classified as having "classic (Kanner's) autism" or "asperger syndrome". He's smack in the middle of the spectrum but he's climbing upward every single day. This blog is to track progress, regression, treatment, connect with fellow parents of children on the spectrum and maybe even educate a few people who are interested in our journey.
Three years ago our son was diagnosed with PDD-NOS which means Pervasive Developmental Disorder Not Otherwise Specified. In layman's terms he has an autism spectrum disorder but doesn't fit enough diagnostic criteria to be classified as having "classic (Kanner's) autism" or "asperger syndrome". He's smack in the middle of the spectrum but he's climbing upward every single day. This blog is to track progress, regression, treatment, connect with fellow parents of children on the spectrum and maybe even educate a few people who are interested in our journey.
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