Friday, April 20, 2007

I got the money!

Recently I applied to the State of Oklahoma for their Consumer Involvement Fund through the Dept. of Developmental Disabilities to attend the Autism One Conference in Chicago in May. Today I found out that they will be paying for my conference registration, hotel, meals, and parking (over $700)! THANKS to my Dad (Ben's Paw-Paw), he is providing airline miles for my plane ticket (my biggest expense). So I am attending for nearly free! Now if I can just figure out how to eat meals in Chicago within my $21 per day per-diem (yeah, right...) Your tax dollars- see, they are worth something! Thanks all!

Wednesday, April 18, 2007

A Trip To Dallas

Happy Wednesday! Well, we returned from Dallas Monday to see Benjamin's doc- Dr. Rao. Every time I leave there I keep thinking this stuff sounds really "hokey" and it is costing us a small fortune (like some $100 vitamin drops- one of the 12 supplements he is taking), but then again, I have to keep reminding myself that "something" is making Ben talk more, have better eye contact, etc... so something is working! We got the results back from the gene test we did a few months ago, but I wish I knew more to be able to tell you other than it meant more supplements and more restricted diet. Now we are doing a low protein diet- no red meats, nuts, or beans, or anything with added sulfates. Since we already can't do anything with milk, his little diet is getting smaller and smaller- good thing he's not a picky eater!

We also started doing the transition evaluation for Sooner Start- to see if Ben qualifies for services through the public school system at age 3. So far the standardized testing is showing that he has some splinter skills all over the place. We have only addressed language so far- but he has some language skills (receptive or expressive) that are up into the nearly 5 year old range! I know he's a smart little guy, and it's all in there, we just have to get it to come out!
Ben is continuing to talk more and more- attention is starting to be an issue. Getting him to focus on a task and not run (pace) is difficult and probably will have to be addressed in school. So far, it is looking like Ben is not going to qualify for services, which I have to admit I am happy about! I would like to have the access to services if we so choose, which would be the only down side to not qualifying, but not qualifying also means he's scoring in the "normal" range. We've only done a portion of the test, though, so I don't want to jump to conclusions just yet... The rest will be next Tuesday... I'll let you know!

Thursday, April 12, 2007


Ben turned 2 1/2!

Hello all- this week has been good. My Mom (Nana) has been here visiting, which has been nice to divert my attention a little from our craziness. Benjamin is still talking a ton! Almost daily I here things I've never heard. Today he picked up a toy and noticed the hole in it, then showed it to me and said "hole". He has also been playing cars a ton with his "Little People" garage, and most recently he has started parking the cars under the ramp and with each one he says "park it right here"- it's adorable. One night he even played cars with his nana for nearly a half hour- constant! I know he is saying even more than I know- because a lot of it I just can't decipher exactly what he is saying.
Ben turned 2 1/2 this past weekend- his incrase in speech from 2 to 2 1/2 has been nothing short of dramatic. I remember just back in January we couldn't get him to say "more crackers" he could say "more" and he could say "crackers", but not "more crackers". Wow, we've come a long way! We have a long way to go, but we've come so far- I am so proud.

Friday, April 6, 2007

Good Friday! Or is it...

Well, today it actually snowed for a few hours- can you believe that? Our morning was rough- I think Ben was a little tired, which could be to blame, but he also accidentally had something with milk in it yesterday- I'm wondering if there isn't something to this milk-free diet stuff. Screaming and running were multiplied X 10 today. I couldn't get him to listen, and everything frustrated him. Hopefully our afternoon will be better. ..

April is Autism awareness month! Shows displaying autism are everywhere- Oprah yesterday, dateline Wednesday, the View this morning... some of them seem to be good, but most of them are down right depressing. Where are the shows that have the "recovered" children? Maybe that's not reality, but give us some hope, people! Those of us with young kids- newly diagnosed kids, trying our best to do just that! Here is a transcript excerpt from a Larry King clip I saw referenced online-
"And back to the rest of the show, which includes a father making the statement that 80% of couples with autism in the family divorce - a statistic that seems to be supported by his intuition... and a few mentions (via video clips) of how having a child with autism is worse than having a child who dies of cancer... and a really very good incentive for a murder/suicide... "

Oh man that lights a fire under me!
Let it be known now- if we end up beating this- the whole world is going to hear from me!!! But for now, I think I'll go make Easter Bunny cupcakes...

Thursday, April 5, 2007

Brrr... it's cold outside!

It's frigid here today! I guess we'll be hunting Easter eggs quickly this weekend!
Well, Benjamin once again has been talking up a storm, saying new things almost daily. Yesterday as I was making his plate for dinner, he said, "Look what Mommy has!", then "Mommy has fruit!". Amazing. Also, I asked him if he wanted to put his waffle in the toaster this morning and he handed me his waffle and said "Mommy do it". We have never heard this!
We are looking into hiring possibly another ABA therapist to come on some mornings. I am also looking into trying to attend a national autism conference this summer to get some more ideas and knowledge.

Tuesday, April 3, 2007

It's A Great Day!

Beginning on Sunday and continuing on... for no apparent reason Benjamin has been chatting up a storm! For example, I told him to pick a book out, so he went over to his basket full of books and said "this or this?" This is terrific conversational talking- not labeling! Also, in the car, he points things out along the side of the road, like "pretty flowers", and he also tells me to "go Mommy go". Also while in time out he tells me "I get up now Mommy" (trying everything desperately to get out of time out of course!). Yesterday he watched Barney and on the starting page said, "WHOAAAAA" and then "Oh My!"- so appropriate. Now the things we need to work on is answering questions. For example, the answer to the question, "What do you want to eat" is "hotdog". Also, he bumped his head and said "knee hurts", because that's the answer he learned when he skinned his knees. We're trying to expand those!! Our latest adventure- Ben has been taking off his diaper at every nap and every morning when he gets up, then pee-peeing all over his bed! The OT's solution, putting him in his zip-up pj's turning them backwards! We're trying that as we speak- we'll see!!

Monday, April 2, 2007

My First Blog!

Hello everyone! Well... I decided to join the rest of the world by starting a blog. Mainly because I wanted to be able to keep everyone up to date on what is going on with our family and Benjamin. If you have reached this blog, most of you already know that Benjamin, now nearly 2 1/2, was diagnosed formally with High Functioning Autism back in December of 2006. Sorry this blog will be so long, but there's a lot to catch up on!

Questions we get asked a lot:
What is Autism? This is from the CDC website:
Autism spectrum disorders (ASDs) are a group of developmental disabilities defined by significant impairments in social interaction and communication and the presence of unusual behaviors and interests. Many people with ASDs also have unusual ways of learning, paying attention, or reacting to different sensations. The thinking and learning abilities of people with ASDs can vary – from gifted to severely challenged. ASD begins before the age of 3 and lasts throughout a person's life. It occurs in all racial, ethnic, and socioeconomic groups and is four times more likely to occur in boys than girls.

What led you to get Ben evaluated?
Even from 8 months old, Benjamin continued to "barely" make developmental milestones like sitting up unassisted. He sat up less than a week from turning 8 months old. He crawled then walked at 14 months old. Ben began to have some "odd" behaviors like an obsession with any and all doors. Especially those commercial doors that open and close automatically! He could care less about the toy department at Target, as long as we got to watch those doors! :) Ben did have a few words, we remember at one point our pediatrician asking us if he said 10 words or more, and we could say, "why yes, he has 9!". Ben never really liked to be cuddled, and had limited eye contact. A He also flapped his hands when excited, made some unusual facial grimaces, and sometimes looked out of the corner of his eyes. Finally at his 2 year appointment there were some clear signs of developmental delay that could no longer be ignored. We were referred to a developmental pediatrican and Ben was evaluated by a team of 8 professionals.

What causes Autism?
Good question and a scary one at that- no one knows. While there is a genetic component (either Ryan or I carry the gene) there is also an environmental factor that triggered the autism. What that is, no one seems to know. There is a lot of speculation about the mercury in vaccines, some toxin in the environment, etc... If you have a little one, do your research on vaccines- I used to think this was a silly idea, but now that my child is the one with autism, I am beginning to wonder....

What is Ben like?
Benjamin is one of the most easy going little two year olds you'll ever meet! He is sweet, loveable, laid-back, and he is SMART! Before age two, Ben could recite his books, read letters, sing his ABC's, and count to 30! He could also stack blocks like a lego champ, and play chase with the best. He loves to play peek-a-boo, be tickled, play with his trains, cars, and read books. Ben does not have temper tantrums, care if his schedule is changed, or in any way aggressive. Again, he is TWO, so he does have some typical 2-year old behavior issues, but not many!

What are you doing to help him?
Everything we can! Now that we are living in Oklahoma, we utilize the services of our state program, Sooner Start, and they come to our home and provide speech therapy and occupational therapy. We also go to a private speech therapist, and we are doing ABA therapy, where a therapist comes to our home everyday for two hours. We also see an allergist/asthma doctor in Dallas who is employing what they call the "Bio-medical" piece of Autism therapy. Ben is receiving 9 vitamin supplements and B-12 injections as well as implementing a Milk-free diet.

What is ABA Therapy?
Applied Behavioral Analysis (ABA)- Typically developing children learn without our intervention--that is, the 'typical' environment they are born into provides the right conditions to learn language, play, and social skills. Children with autism learn much, much less from the environment. They are often capable of learning, but it takes a very structured environment, one where conditions are optimized for acquiring the same skills that typical children learn 'naturally.' ABA is all about the rules for setting up the environment to enable our kids to learn. It's really just teaching basic skills and repeating them over and over again. Our ABA therapist is a gift from GOD- the most patient person I have ever met.

What will Ben be like when he grows up?
Only God knows! Our hopes and prayers is that he will be a "normal" (whatever that is) little boy in a typical classroom with typically developing peers, and that he will grow up to do whatever he wants to do- the sky is limitless!

Is Ben in school?
No. He was in Mother's Day out in San Antonio, and he is on every waiting list in town here. For Fall, we really aren't sure what we're going to do- that's too hard to predict in April! We are planning on enrolling him in a Mother's Day Out program at a church, and he is on the waiting list for another program for kids with communication delays.

Are you having more kids?
Funny to post this on a blog, but we get asked this ALL of the time. Only God knows this too! We were advised genetically about our odds of having a second child with some form of Autism is about 1 in 10. Our honest fears: 1: having a child with severe autism, 2: time and attention to either Ben or another child.