first break

Alden has his first broken bone. He has a stress fracture in 2 of his metatarsals. It's likely caused by his excessive jumping and made worse by his toe walking. It took us 24 hours to get him fitted for a boot. I was really angry he had to go to school without and protection for it today. We went right after I got out of class to get him one. He is doing well with it except for stairs, which is understandable. He doesn't seem to mind it but it's only been a few hours.

unrelated

Hey guys! I decided to start a blog just for fun stuff like links, reviews, things I like etc. Nothing personal or heavy at all. If you wanna follow it you can find it here, if not that's cool too. Thanks for reading and I hope all of you have an absolutely wonderful Holiday Season & New Year!

Christmas Dread

Secret Santa is a pastime that I'd like to keep that way. I've never liked the idea of giving a gift to someone I don't know well or getting a gift from someone who doesn't know me well. Gifts should be personal and special and not something you are required to do.

This brings me to my point. Alden's class does Secret Santa every year. Every year I agonize over what I should get. There's a $5 maximum which even in the junky stores is hard to adhere to since the good stuff is all at least $5 most of the time.

Then there's the whole autism bit, lots of kids with autism are fixated on one thing, or have irrational fears of things, or just plain will not play with certain toys. For instance if you gave Alden a Matchbox car he'd probably set it down, and go get on the computer. He doesn't care about them at all.

I NEVER know what an appropriate toy is for his randomly selected classmate. I end up buying a Batman toy every single year because I'm at a loss for what to get. Some parents don't let their kids play with the "bad guy" action figures, which is stupid, Batman can kick Spiderman's ass just as easily as the Joker's in pretend play (and let's be real DC > Marvel & Batman > Spidey & could totally take him down.)

I have a hard time shopping for people I know and love, so shopping for a random 6 year old kid that I've met once for 5 minutes is impossible.

success!

The Christmas Cut Out Cookies were absolutely delicious. Except for the ones that Alden thought a Sour Skittle should be added to...those were just interesting. haha If you want to try the recipe out you can find it here.

I am so glad that Alden has good teachers who let me know what to send him for his class parties. I'm also really glad he likes these cookies. Good GFCF cookies are hard to come by and a lot of the time they crumble so much you can hardly eat them. I'm very pleased with the turn out of these cookies. We kept some dough for our annual family Christmas Cookie party that my aunt holds every year. I'll update with what the rest of the family thinks of the cookies after that goes down.

excuse me, WHAT did you say?

I have mentioned before that sometimes I have the luxury of briefly forgetting that Alden has autism. This is because he's somewhere in the moderately to high functioning demographic of the spectrum. What I have failed to mention is that sometimes I forget that he's about to be seven years old. His speech is still developing and while he's building a really good vocabulary, he still has a long way to go. Recently he has been surfing the net and getting on YouTube where he's learned some new words & phrases. Sometimes that's a great thing, sometimes it's a not-so-great thing. He's started using words like "stupid", "shut up", "I hate you", "PEWPEWPEW (gun noise) DIE!", and the most strange one "butt-cheese". I have of course been discouraging this language and even giving him some alternatives that get his point across in a nicer way. If you have a child whose autistic qualities are like his you will know that scripting is hardwired into them and once he learns something he WILL NOT forget it. I've been explaining that I'm glad he's learned new words but some words make people sad or angry when they hear them. The other day while sitting around thinking about ways to curb this behavior but not discourage him from picking up new language I started thinking about his age. I sometimes forget that neurotypical children around his age also use those words and usually get into trouble for them as well. It did make me feel slightly better to realize that I'm not the only parent of a child this age dealing with this. As usual I'm also pleased that he is learning language, using it appropriately, and to be frank I'm glad he's using words that kids his age use even if they are rude. Sometimes 7 year olds are rude. We recently acquired an Elf on the Shelf and that has been helping somewhat with the language.

On a much more lovely note we have acquired the ingredients to make gluten free casein free Cut Out Christmas Cookies. This is something I've missed terribly for the past 4 years. Christmas Cookies have always been a huge part of my family's Christmas and not being able to make them with Alden has been sad. I remember the last Christmas we did them he was 2 and he kept shoving his face in the flour, I took a picture & captured it "Tony Montana". If the cookies turn out well I'll link to the recipe in my next blog. Speaking of Christmas I'm almost done shopping. I have just a few more little things to pick up and two more big things to order and I'll be done & ready to start shopping for Alden's birthday.

flower remedies

I recently learned about something called "Bach Flower Remedies" and I'm considering trying it out with Alden. I've already read that there's no definitive evidence, it's all placebo effect, etc. so don't bother commenting to tell me that. I KNOW the GFCF diet has worked for us and there is no definitive evidence there either. I am going to run the Flower Remedies idea by my husband but I'm pretty sure he'll go along with it, he knows I research things thoroughly before deciding whether or not to try them. (e.g. not chelating)

I've researched the Bach Flower Remedies and I'm thinking the ones for impulsiveness and daydreaming could be beneficial. The plan would be to buy one kind first, wait to see if we see improvements and then experiment with other things if we like what we see. It could be a total waste of money, or it could help chill him out and maybe take the edge off his aggression. Either way I figure it's worth a shot, especially since his teacher keeps asking us if we have ever thought about medicating him. *eyeroll*

update

Things have been all over the place lately. Halloween is always a challenge what with the diet & all. Having to ask people repeatedly if they have any "fruity candy" "oh not that kind" gets tiring. Worse is the fact that we don't really give Alden food with artificial coloring and fruity candy is pretty much artificial coloring, flavoring, and sugar. Last week he got into trouble a lot. I suspect it was probably a reaction to the dye and since he ate loads of candy when normally he will have an (all natural sneaky vitamin) sucker a day.

Funnily enough he was absolutely great with trick or treating. We went to the zoo and a local gathering and he had a blast running around looking at the other kid's costumes. Speaking of costumes he was Lucky the Leprechaun from the Lucky Charms cereal. He chose it all by himself. I was really proud of him for choosing something unique. He was the only leprechaun we saw. I thought it was really cool he wasn't something generic like all the other 500 Spidermen we saw while we were out and about. He's definitely my kid about costumes.

Then this week was the time change which is always hard for everyone but autistic children are particularly rigid in their routine. Since it was technically 7 he knew it wasn't bedtime because of the clock and he wasn't having any going to bed early. We've come to a compromise of 7:30 and he gets to watch Pink Panther on Netflix before I turn it off around 8:15 and tell him to go to bed because he has to be on the bus EARLY. He gets ON the bus @ 6 but that's a rant for another time.

Wednesday mornings have become hellacious at the bus stop. He screams, tries to run away from me, and keeps telling me "I WANNA GO HOME!!! BEDTIME! I SLEEPY!" I tell him he can sleep on the bus (hell he's on there for an hour and a half) but he still gets mad. Today he swatted his bus aide. She apologized like she had done something wrong and it made me sad.

I really think the Wednesday Morning Syndrome is because he knows I have school that day and he wants me to be home instead of going to school. He doesn't miss me because right now my school hours are during his & I'm home in time to shower and start my homework before he gets off the bus.

So today started off with a screaming swatting kid and it's ended with us spinning in circles and having a dance party to Florence and the Machine. Some days are funny like that.

we aren't all on drugs

The other day something happened that I haven't been able to let go of. I don't know why it's burned into my brain but it is. Anyway here's the story.

My mother-in-law & I took Alden to swim class last week. There was a woman sitting at the table and she commented about how "little" Alden was. At first I thought she meant that he was short (he's not, he's 4 feet tall!) and I just kind of nodded and smiled to be polite. Then she pointed out her grandson who was...well, to be blunt he was fat. I then realized that she likely meant that Alden was thin. He is, he weighs 45 lbs. He is still at a "healthy" height & weight though.

Later on she commented that "at least he has 2 swim coaches". My mother-in-law replied politely with "he has autism and learns by watching" then the woman replied "Oh! Well that's why he's so thin, it's his medication!" I was absolutely stunned, and mortified at the same time. Number one, as I said he's not underweight, he doesn't look malnourished at all, he's just tall & thin. Number two the fact that she just assumed he was on medication. Has it really come to that? Everyone assuming all children with problems are on medication? I was disgusted and I'm pretty sure I actually snarled a bit after she said that. Then I interjected with "Oh, no, no, no, he doesn't take any medication." As if I was having to defend him.

The fact that she was so concerned about his weight while her own grandson was literally twice his size was kind of startling to me.

I am not saying there is anything wrong with children who need medication being on it. I am glad they have success with certain drugs. We just haven't had that kind of experience yet and I hope we never have to. If we do that's fine but I found the fact that a stranger would assume as much really annoying.

update on progress

Here's an excerpt from that entry about Alden's abilities one year ago:

As of today he can count to 32, knows his ABCs, is talking in a few short sentences, will sit and watch an entire movie, has stopped headbanging completely, maintains eye contact, is an internet junkie, does 50 piece puzzles in a matter of minutes (starting from the center and never looking @ the picture), knows all his animals, shapes, colors, and is beginning to read beginner reading books. He is currently obsessed with all things Dr. Seuss, Richard Scary, and Mercy Mayer (in other words he's very much a book snob like me). A year and a half ago I would have thought you were insane if you told me he could have come this far, because at that point he was completely non-verbal. I realize a 5 year old knowing their ABC's & learning how to read seems like no big deal to most people, but he learned it all in a year & a half, starting from nothing, like an infant.

Today I'm happy to say he's doing even better. He can count past 100, he can now tell us all his wants & needs (even if we sometimes have a hard time understanding them), he uses short sentences, he has amazing manners (yes, my child who can hardly speak says please, thank you, bless you, and excuse me because that's important), he can type his name, he can type anything if you put the words in front of him, he knows our (actual) names for in case he gets lost, he can read over 100 words, he can do 100 piece puzzles still with no need for the box. Right now he's obsessed with YouTube & watching old 90s Nickelodeon cartoons. He keeps coming up to me & saying things like "AHH REAL MONSTERS!" so I can add it to his chart. I made him a chart so that he can learn to type his favorite things by himself, all his favorite charaters/cartoons/things are on it and he just looks at it & types them into Google, Amazon, or YouTube and surfs to his heart's content. He is an absolute ninja when it comes to balancing & swinging. He would swing for days at a time if I'd let him. He still likes video games but he's beaten all of his favorites already (to 100% completion even) so he hasn't been spending too much time on them lately. His progress is always so awesome to watch and I get so excited when he does new things. Every single new word he says is an amazing hurdle and I get so excited. The sentences are my favorites though.

Now that he can talk a bit better I've decided to start documenting his favorite things each year.

color: yellow
2nd favorite color: red
TV Shows: Doctor Who, The Office, The Big Bang Theory
Cartoons: Ren & Stimpy, Chowder, Tiny Toons
Movie: Star Wars (he hasn't specified which one but it's definitely one of the old ones)
food: potato chips, chicken
activities: swinging, internet, Netflix
bands: The Beatles, Foo Fighters
song: This is Sparta Remix (he found this on YouTube & listens to it CONSTANTLY, Yellow Submarine, ABC

So that's our annual update for this year. :D

a question

Imagine being in the public women's restroom and a woman coming in with her son, he is probably around 9 years old...does this bother your? Does it change your mind if he's 12 years old? 19 years old? Does it change your mind if he is mentally disabled? What about physical disabled? Now change the scenario you are a man using the men's room an a father brings in his daughter. How does this change your mind? In women's restrooms everything is done in a stall, many men's rooms have urinals out in the open.

I've been seeing things about public bathroom safety for kids posted lately and it made me curious as to what you guys think. The obvious solution would be for everywhere to have a family/unisex restroom but since we aren't quite there yet let's discuss the way things are now.

I'll reserve my comment about it all for later because I want to hear what YOU think first.

we're #1!!!

The Special Olympics were today. Alden got 1st in the 50 Yard Dash and the Softball Toss, he got 2nd in the Soccer Kick. I'm really proud of him. They had little booths set up so the kids could do crafts and get their faces painted between games. He made a picture for his Hugger (one on one volunteer) and he got a Smiley Face painted on his cheek. He hated having it there and peeled most of it off before we even got home. It was a great day.

There is a walk locally next month to raise Awareness for Disabilities if anyone wants to go let me know and I'll get you the info. They have invited a lot of political representatives to the event and want them to see the amount of people we have with disabilities here so they will realize how few resources there are. Everyone I know has to hop the TN border or go to ATL to get proper care for their kids who have Special Needs. There also aren't any programs to get them integrated into the workforce which needs to happen ASAP especially with the rate of autism being 1 in 98.

incase you weren't aware...

It's Autism Awareness Month. Everywhere I go I see the billboard "a child is diagnosed with autism every 20 minutes", I see things posted on Facebook from friends, and even the Empire State Building was lit up blue in honor of Autism Awareness.

Now I'm going to tell you a secret. I am aware of autism, I have an amazing 6 year old boy with autism, but sometimes...I forget! That's right folks, sometimes I forget that my kid is even on the spectrum. If you came to my house chances are you'd be hyper-aware that he has autism. The things he does are either strange, seem rude, or are impressive beyond his years, you'd say "oh this kid is different". I don't see him that way, I am used to him, this is who he is, and how he is. Everything he does is 'normal' to me. The only times I really super aware is when he gets frustrated because he can't tell me something or he's around other children. Of course I'm aware he has autism, it dictates quite a bit of our life, but it's just how we live and it's perfectly normal to me. He blows me away with his computer skills, motor skills, and problem solving. I feel incredibly blessed to have a kid who is that high functioning. I've been in the low functioning zone before and I don't miss it, I hope I never have to see my child in that much torment ever again.

I know the economy more than blows right now, but if you've got any jingle and you'd like to donate to an autism charity there are links to sites at the bottom left of this blog. I don't tell people what sites to donate to because everyone is trying to help these kids. While we might not all agree on the causes, therapies, or protocols we all share a common goal and that is to help these kids grow into happy, healthy, productive adults.

i really should start updating this more

We received instructions for a yeast protocol from the doctor via the mail today. I'm so excited to start it. I can't wait the couple months for school to be out so we can get down to business.

We also found a place locally that sells weighted blankets with cute fabrics. We'll be getting one of those soon and I'll write about an progress we see with it. Right now Alden sometimes wears ankle weights or a pressure vest made of scuba material while at school.

We've been working in a math readiness book at home. He's doing well in it. We've also started doing addition & subtraction where I physically give him something or take things away. He understands that really well.

His 3rd report card came & he has all A's & B's again. He had more B's this time because we recently updated his IEP so many of the things he's working on are brand new. He's doing well in OT and even impressed her with his typing & reading skills.

it's been a while...

It's been a while. Since my last update we've been back to see that doctor and he told us Alden's mercury levels were insanely high. We decided to get a second opinion before doing anything drastic about it. We aren't against chelation, but it would have to be absolutely necessary for us to do that.

We are going to do a yeast protocol over the summer so if he has some of the severe die-off reactions the school won't have to deal with it. His teacher complains about his slightly erratic behavior, so I don't want to burden her with his reaction should he happen to have one.

Alden's been making slow but steady progress. He counted to 100 the other day, he's using a lot more small sentences, and he's interacting with children in his class. He isn't always NICE to them...but he's trying to talk to them & that's progress so I'll take it!

I feel like things are going well in our world. I really feel in my gut that the yeast is a major problem and when we eliminate it that we'll see some great strides.

busy little bee

I've been BUSY this week. First off with Alden's doctor's appointment. We went on Wednesday to see a highly recommended Nutritionist/Family Practitioner that we were on a wait list for since December. He was absolutely fantastic. The appointment was scheduled as a consult but he actually went a head & got blood & urine samples from Alden to be sent off for testing @ Great Plains Lab. I was impressed by that because most doctors just tell you what they're going to do eventually but he jumped right in with both feet & already started actually doing something. He also broke down all the different tests for us and showed us the best & most cost effective way to go about getting all the tests we need done. While we were there Alden also got an Rx for an ear infection. I realized that morning that he was acting like he does when he has an ear infection (falling down a lot, crying, feeling warm but not enough for a fever). Anyway the appointment was a huge success and we'll be going back either later this week or sometime next week for more tests. He has to fast for them & he's going to be annoyed when I can't give him his cereal in the morning.

On Friday my friend Allison & I went to an autism conference downtown. I didn't really learn anything. I wasn't really expecting to, I've read basically everything on the internet about autism so nothing really surprised me. I did really enjoy a few of the speakers and just getting out of the house for a day to sit in a room full of people who knew exactly what I was going through was refreshing. The did a little bashing of some of the more unorthodox methods but I went in expecting that as well.

Alden got out of school early again this week. They have been having snow days nearly once a week for the past month. I don't mind having him home (actually I miss him when he's not here) but I don't want him to have to make up days all freaking summer.

His OT overbooked for IEPs this week so she called me today instead to talk about his goals for this year. She mentioned that he is reading more than 30 words at school...which is awesome. Then she mentioned that they were "really impressed with his reading skills" because 30 is the required amount to pass regular kindergarten and even her own NT some was only reading 27 words. Then I got really super excited because I know he can read way more words than that (like character names and things like that). So I'm super proud of him. They are going to start him on a handwriting program which is cool because we've been working on writing his name (legibly) at home and he's been doing a lot better. They are going to start with tracing, then copycatting and then independent. She said if he has a hard time & gets frustrated they will help him begin to type. Then I told her we have been doing that at home as well. Right now if he sees something he can type it. I made him a huge list of all his character/movie/book names a while back because he wanted to Google someone new every 5 seconds and I needed to do things like fold clothes so I just made him the list & told him he could type them himself. He's now pretty good at knowing where the letters are.

Anyway it's been busy but we're getting things accomplished. His regular teacher keeps commenting on his hyperactivity and extreme cases of handflapping & clapping that are preventing him from concentrating. I understand her concern but honestly, what does she think I can do about it? I'm just hoping that at his IEP she doesn't bring up medication or anything like that because we will have words if she does. I'm not anti-medication, I'm anti-medicating MY child.

nom nom nom

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.

oh brother

Facebook statuses are typically stupid & nothing to get annoyed about but this one irked me a bit.

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.

hope & help for recovery

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.

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.