Happy 3rd Birthday Ben!

I can't believe my little Ben turned 3~ it has been an overwhelming year. Ben had a fantastic Birthday party! We had a ton of friends and family gather to celebrate the big day. Here's a picture of Ben getting into the giant moonwalk. The kids had such a fun time! I was so proud of Ben- he participated, played with the other kids, and was a trooper for the whole party!

Ben's school is fantastic. He is doing so well- he's learned the songs and the routine. It's hard-core preschool! They have schedules, circle time, calendar, art, snack, playground, songs, and small group time. I love getting to watch him and see how he does at school. Ben likes to be the weather man. He gets to go to the window and tell the class what the weather is like that day (with a little help of course!). He gets pulled out for speech twice per week. I think the hardest thing to watch is playground time. Ben doesn't play with the other kids, he just does his own thing. This is definately our greatest need at this point- social. Ben's speech was tested and found to be within "typical" age appropriate limits, but the pragmatic/social use of language is delayed- conversation, questions, etc... are what we need to work on. Ben's joint attention has improved dramatically! He addresses us, looks at us, is starting to show us things (yesterday he held up a big french fry and a little french fry and said, "Look mama, this one's a little french fry, and this one's a big french fry- look mama!" He's also starting to ask us questions, like "what's that?" and "do you see that?". My heart melts everytime he does this... you have no idea what a big deal this is.

Many of you have heard us talk about Ben's tummy and some potty problems we've had going on for a couple of months now. This is still a problem, and we will be seeing a GI doctor in Austin to try to address these problems. We've also had some behavior problems develop (screaming) as well as his sleep and diet have been affected, and his self-stimulatory behaviors have increased as well. Our doctor thinks all of this is related to a GI issue, and Ben may have an endoscopy done to try to figure this all out. In the mean time, the behavior has been our main concern. Ben has been having some tantrums (something that is new to us). While some of this is related to the GI issue, some of it is also the "terrible two's"... just a little late! Yesterday we had Ben's well child doctor visit- he is the size of a 4 1/2 year old kid... oh my...

Ben has also transitioned out of Sooner Start, our early intervention program, and into the Public School System. We opted to receive "services only", which means Ben goes to school just to receive speech therapy twice per week. We chose not to put Ben in the "Developmentally Delayed Preschool" at this time. With so much else going on, when would he have time for that?!!

It's Almost School Time!

Hello all-
Well I am finally back up and running again after my back surgery. And ready! Ben is doing absolutely fabulous. He is talking more and more every single day. It is nearly every day that he will say things that make me say, "I didn't know he knew that word". Last night he slipped on the wet tile and said, "It's slick." hmm...

On another note I had an appointment with the doctor in Austin. He is fabulous. He is obviously an expert on autism and had a new book come out in July. His prices are outrageous (I'm embarrased to even tell you how much), and isn't covered by insurance, but I think it's going to be worth it. He is starting Ben on the drug Diflucan to kill any yeast that may be in his body (a test we did revealed he had high yeast levels). We will be finished by the time school starts, which is good because we could see some behaviour issues during die-off.

Ben's school is finalized, he will be going to Leaps Preschool at OU Health Sciences Center. He will get speech therapy there as well. He will go three mornings a week. We are so excited about this opportunity and think Ben will do so well there. There will only be 9 kids in his class, and about 5 teachers/aides. Amazing! He starts in a few weeks.

Can you believe it's almost fall? Can you believe Brandy will be 30 next week? After having back surgery, I am especially feeling old!!! :)

A Little Update

Hello all! It's been a while since I've posted last, so thought I would give you a little update. Benjamin is doing terrific! I think we are seeing some positive changes from the gluten (wheat) free diet. Ben seems more engaging, alert, and responsive. He is becoming so funny! I (Brandy) on the other hand, have been not doing as well. I hurt my back again, this time seriously. It's been a nightmare of a week, it took us 3 doctors and a trip to the ER to finally get an MRI to figure out I have 3 compressed discs, 1 herniated disc, and an annular tear in another disc. All I can say is Yowch. I never dreamed of so much pain... Anyways, I got some fantastic drugs and am hanging in there. I see a neurosurgeon tommorrow and will know a plan of action. Yesterday I got out of bed and Ben told me, "Mama sleep. Go back to room and sleep". You better believe I hoisted myself out of bed and got up! :)

On another note, last week Ben attended a "typical" preschool classroom. He sat in the class with his OT for 2 hours and participated with the other kids. He did fabulous! His OT said he was totally indestinguishable from the other kids. That's exactly what we want! The only issue he had was doing his hand and mouth thing going down the slide. Yay Ben!

A trip to Colorado

Hi. We recently went to Colorado for a family vacation. We had a great time! Ben really loved riding the train through the Royal Gorge. He kept saying, 'ride Thomas?'. Thomas the Train is his newest love. We play, watch it on TV, etc... he loves trains!

The last week has been rough. Ben has been a little "off", we're just not quite sure what it is. It's been hard to hold his attention, get his attention, and to get him to focus. His self-stimulation has also been somewhat alarming. We're just not sure what's causing all of that!

Today was our first day of the GFCF diet- which means Gluten-free and casein-free (no wheat, no milk). It's tough. There's so little he can actually eat! But we are adapting and have come to the conclusion that we will just have to get everything at the health food store. We had already been doing the casein-free (milk) part, but we are now adding the wheat part too. We had an appointment with a nutritionist last week from Austin- and she recommended that we try the GFCF diet for 3 months. If we don't notice enough change to warrant the diet- we won't continue. We also added some more supplements and we making sure that Ben is getting everything he needs in his diet. At the end of July we will meet with the bio-medical doctor in Austin.

What I learned in Chicago

Well, nothing short of a TON!
It was nice, but a bit overwhelming- a lot of information- I felt a bit like I was in medical school. Things I learned: Vaccines are bad! We will not be giving Ben any more vaccinations. If I had an infant, my advice would be to do them later- after age 1. They tend to give them too many too fast. The amounts of mercury is astounding. A disturbing book I started reading "Evidence of Harm" by David Kirby. Nothing short of "WOW".

I also learned a lot about the biomedical piece of autism. And that this is as important or even more important than any other intervention. This is figuring out with a doc exactly what is going on in Benjamin's body and how to fix it to improve neurological functioning. This can be in the form of diet, supplements, getting rid of metals (chelation), finding any yeast or fungal issues in the body, treating any "gut" issues, etc... 80% of autistic children have some sort of "gut" issue! I didn't know that! Some of this we're already doing, but I found out that there's so much more we can do!

Hyperbaric oxygen therapy- this was a new one on me. But the results seemed really good for a lot of kids! Something worth looking into.

I guess most of all I learned that there is no one "quick fix". What works on one child may not work on the next. The experts say that they have never seen the protocol look the same for two children. They will all respond differently to each intervention. I guess you just have to have a "try it and see" approach.

It was nice to meet some other families and know that they are going through the same issues that you are. It was nice for people to be able to actually relate. And it was nice to meet some parents of the "recovered" children. Children no longer diagnosed as autistic. There is hope!

Chicago tommorrow!

Hi all,
I leave for Chicago tommorrow to attend Autism One National Conference, so I will update when I return! Hopefully with some great information!

"It's Not Herbie, Mama, It's Froggy!"

Yep, that's what he told me this morning after I repeatedly kept calling Froggy by Herbie. I thought he was holding Herbie, not Froggy, but he quickly let me know otherwise! That's pretty good!
Recently I have been reading a lot about the vaccination debate. When you start looking into it, it's quite disturbing and confusing. There is a huge debate (I think right now the most debated topic in medicine) over whether vaccines are a cause (trigger) of autism- of course you have to have the genetic component of autism as well. I hadn't really thought much about this until my own child is now autistic and I'm the one trying to figure out what this "trigger" might be for him. I read on the CDC website- they have a whole page on vaccines and autism, and the last FAQ is what disturbs me the most- "should we delay vaccinations until we know more about the negative effects of vaccines?"- to me that says that they don't exactly know what the negative effects of vaccines are just yet. They say no, but hmmm.... it makes you wonder, doesn't it? I also read an article where a man named Jock Doubleday is offering $80,000 to the first MD or CEO of a pharmaceutical company or a member of the CDC to publicly drink standard vaccine additives- he first offered it on 2001 and has increased the offer steadily since then... there have been NO takers yet... yet by age 2, my son has received 24 vaccines.

Bless You, Mama

As I'm sitting at the computer, Ben is downstairs with his therapist working. I sneezed and from down below I hear, "Bless You, Mama!". Everyday I hear new things I didn't know he knew! We are continuing to see DRAMATIC progress. Tho we still have our issues, don't get me wrong... but as his uncle Russ put it, "he's a totally different kid!"- thanks, uncle. We had his transition evaluation for sooner start, and Ben did really well. His standardized scores showed normal/age appropriate in all categories except peer interaction/social. That's the score that would qualify him for services through the public school system after he turn's three if we so choose it- the developmentally delayed preschool. That's the hard part about high functioning kids, sometimes they fall through the cracks- for example, his language test scores are age appropriate, although every time you ask him what he wants to eat, it's always hot dog, and he can't tell you what we saw at the zoo, and he'll repeat random phrases at inappropriate times. And we still have the stimming issue as well. Those are the things that the standardized tests don't pick up on and are not normal. So, we still have work to be done- but OH have we come a long ways!

I enrolled Ben in a "normal" preschool today for Fall. Two days a week 9-11:30am. I figure September is a long ways away... who knows what he'll be doing by then!

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!

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!

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.

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...

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.

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!!

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.