Daddy's turn

Greetings everyone. I’m taking my turn at blogging, hopefully it won’t be a let down compared to Brandy’s writing.

Brandy is incredibly busy getting Ben’s new schedule rolling on top of getting geared up for her fall shows with Brandy Originals.

Ben’s busy fall schedule includes two schools (2nd year at LEAPS and starting pre-K3 at 1st Presbyterian), gymnastics, speech, lots of 1-1 therapy and nightly wrestling with dad! In addition we are continuing work with Dr. Jepson & Krisgsman at the Thoughtful House in Austin plus testing some new therapies with our friends at CARD. The chemistry experiment on Ben continues with on the biomedical front and our little guy continues to make amazing progress. He has strung several really good weeks of behavior, attention and FUN together. Today we rode bikes, shot off model rockets spent some time at both of dad’s favorite stores Home Depot and Lowe’s. Carrying on lots of conversations along the way. There is no doubt to me that Brandy’s never ending efforts with doctors, schools, therapists and parent groups is one of the critical reasons Ben is where he is. Thanks to my parents, we’re able to also enjoy date nights and are able to continue to grow our relationship.

To catch everyone up on our latest family happenings… We just got back from a great vacation to Orlando, FL with my parents and brother and sister-in-law. Ben’s first trip to see “Mickey the Mouse” was very successful. We’re very thankful to the folks at Disney World for their efforts to accommodate kids with special needs; it made the day amazing for all of us. Ben’s favorite ride was Dumbo (where he got to control the height of his flying Dumbo), but he also loved going down the 52’ drop on Splash Mountain. We also enjoyed a fun weekend at Lake Eufaula where Paw-Paw tried to knock dad and Ben off a new tube behind the boat. The only success was making Brandy and Nana sick from all the turns. Day 2 was a different story as the ladies and Ben stayed on shore, needless to day I drank half the lake. Brandy later told me that Dan would get on the walkie-talkie and say “watch this” about 10 seconds before a significant crash.

Ben’s become hilarious and very mischievous. I love it – a little bit like his old man! He is a ton of fun to be around. He and I play lots of chase, have tickle fights nightly, wrestle and other guy stuff. But we also hit golf balls, play legos, trains and catch (sort-of).

I hope the change of pace was good for you all. I’ve enjoyed this so I may have to do it in another 6 months. Ohh – I’ve included one of my more recent favorite pictures with the little guy.

Take care,
Ryan

"Is Ben Stafford here today?"

Today at school during circle time- the attendance part, Ben's answer to the above question: "If Ben Stafford was on an airplane, he would not be here today." Where does he come up with this stuff?! His teacher said, "Well Ben Stafford is NOT on an airplane, so what do you say?" Reluctantly, he says, "Good Morning." What a funny guy! He's getting quite the personality, funny, ornery, and stubborn. It MUST be from his Daddy! :)
We had another FIRST today. At the grocery store, Ben WALKED next to the shopping cart instead of his usual riding in the cart. We have tried this before, but it has NEVER been successful. At least not to buy a shopping cart full of groceries. It usually results in running off, running away, obesssing over the doors regardless of anyone else, meltdown in the middle of the aisle... etc etc that probably sounds familiar to those of you with two year olds. We nearly left in the beginning after having a meltdown and laying in the floor at the entrance of walmart because we didn't get a shopping cart (we were going to Subway first). I sat him on the bench and asked him if he was going to listen and mind mommy, or we were going to leave. I knew he wanted to do this in advance. I couldn't believe it, but he decided to listen! I had to remind him several times that if he didn't stay with the cart, he would have to ride in the cart- and I was so surprised this worked. I know this doesn't sound like a big deal to most of you- but for Ben this was HUGE. Yay Ben!

Ben interacts with kids at FunStop!

Today we went to Fun Stop- it's an indoor play place. A little boy about Ben's age immediately began following him around. Ben picked up on this and thought it was funny. Ben began interacting with him and playing! "Follow me", "You go this way, and I'll go that way", "Let's go down the slide", etc, etc... So much I couldn't even see. I couldn't believe it! This was the first time I had seen him play with kids, let alone kids he didn't know! And this was the whole time we were there! Of course then another older little boy came along and wanted Ben and his "friend" to play Batman. He wanted Ben to be Batman. Of course Ben has no clue who Batman is, and immediately started speaking gibberish. The little boy said, "Do you speak English?" But Ben played the game and chased the kids anyways... Batman or not.

Ben played at school!

I wanted to be sure to write this one down- Ben's first time playing with other kids! The teacher told me yesterday at school that he played for nearly 30 minutes during free time at the kitchen/house area PLAYING/interacting with the other kids. That means talking to them! We have been at this school almost a year and this is the first time he's ever done this! This is huge!
Ben usually paralell plays, but doesn't usually actually play/interact. He just prefers to do his own thing. Now at home, he's very social with us and adults. He just hasn't found how to carry that over and generalize with his peers.
Maybe we're getting there?!

This morning he got up at 3:30am and didn't go back to sleep. Uggg... I think maybe he's getting too much sleep. The new med makes him tired, so he is taking a nap which is great, but sleeping 11 hours at night then a 3 hour nap is too much sleep. Now that he's finally getting over our CA trip last week hopefully that will become more normal and he'll be less tired.

This morning Ben picked up a piece of his egg at breakfast and told me it looked like Kentucky. Such a funny guy! :)

SO much News!

Hello all- Sorry it's been a while since I last updated you all...
First things first- I went to Chicago recently to attend Autism One (second year in a row). It was amazing once again- I learned so much and how behind we really are here in OK. Prior to that, we really had begun having some significant behavior problems with Ben. Sometimes it seems similar to the challenges my friends with fiery 2 year olds have (meltdowns, tantrums, biting, hitting, etc), but compounded with autism and an almost 4 year old, it's a BIG struggle. We got to a point where we couldn't find anything that was reinforcing "enough" for him or consequence great enough for him. We knew we needed more help in terms of our ABA therapy (behavioral), but our provider is spread SO thin here in OK that she just can't spend the required amount of time with each family that is necessary. So I began to search out other options in terms of ABA consultants.
I also found CARD- Center for Autism Research and Development. It is based in CA, with clinics all over the country and internationally as well. They have a clinic inside the Thoughtful House in Austin, where Ben's doctor is located. I knew they had a good reputation, and I gave them a call. They have a "Challenging Behavior Clinic" in CA- I called and basically said, "I don't know what you all do there, but here's the problems we're having...". They told me they could help, and off to LA we went. Ryan obviously couldn't take a week off from work, so Ryan's mom, Ben, and I headed off for a week. Ben really "threw them for a loop" so to speak, and by day 3 I was getting so discouraged! I thought... If THEY can't help us, who can?
Once we finally figured out the root cause of his meltdowns- having to control everything- we could move forward from there. So thousands of dollars later I leave with some laminated red and green cards- red means you have to do what I want and how I want it. Green means it's your turn and we can do whatever you want and how you want it. As long as Ben knows his turn is coming, this seems to be working. Day 5... so far so good. By no means are we tantrum-free, but we are seeing a glimmer of hope in the behavior department.

The good: conversation has exploded! Little things like, "Oh Man!", and "sorry about that". And he's using them appropriately! He's become quite the funny little man. CARD was so impressed with his vocabulary. It's pretty cool.

In Chicago, I heard the founder of CARD, Doreen Granpeesheh, speak about a new ABA program that they would be launching called SKILLS. They have been working 5 years, and spent millions of dollars on this program. It will be an online ABA program individualized to each child's needs and training for therapists. It looked so cool! When we went to LA, they actually approached us about it- they had been searching for a year or so for the right family to do a test pilot program with, and they chose us! We are finalizing the details, but it looks like an amazing opportunity for us and especially Ben. And we know they have a vested interest in us succeeding in the program as well. How ironic that we were just at the crossroads of needing a new program/provider... All I can say is GOD...

On the medication front, we recently tried a med called Atenolol- it is a blood pressure drug, but also shown to help kids with autism/add/adhd. We did not see any improvements with Ben and some bizarre side effects, so we stopped. We are now trying Clonadine- a very small dose. We are trying to find the right balance- something to help take the "edge off", but not make Ben a little zombie! It does make him sleepy (of which a little is good), but we need to find the right balance. We are still doing all the other dozens of supplements. We have also been doing LDN- Low Dose Naltrexone- it is an immune system drug- and I think we have seen some significant improvements from that. All in all, we are still trying to find the right mix of therapies, supplements, and meds. All of which seem to be helping tremendously! I know you will all be so amazed when you see him next. Take care.

An update...

Hello all! Just an update on our life! Ryan and I just got back from a Caribbean cruise- we had such a wonderful time. It was beautiful! Ben stayed with his Grammy and Grandpa and they had a great time. We really needed the break. :)
Ben has been doing ok... lots going on. Our latest development has been seizures. They are little moments of "tuning out" more or less. A few weeks ago we did an EEG and an MRI and today we saw a pediatric neurologist. We are going to be starting an anti-seizure medication. The seizures are probably not harming him, but they probably are or will be interfering with school and learning. Unfortunately your brain starts developing pathways, and it wants to go back to the same pathways, which could mean more frequent seizures... So, we will give the meds a shot.
We have also been battling ADD/ADHD, which has not been diagnosed yet, but we don't really need a diagnoses to see the problems. :) Focusing, paying attention at school is becoming a major problem. We are trying to tackle this with supplements to try to treat the underlying problems rather than cover them up with medications. So we are giving some new supplements a shot, altho we have yet to see any improvements from this.
The Good news: conversationally we are seeing a huge burst! Lots of little things like "yeah and thanks", rather than our usual scripted "thank you and yes." He is also really starting to talk about things and talk in longer sentences or actual conversations, altho a lot of times it's about his OCD topics like doors, elevators, or our newest obsessions, thermostats and alarms. (great).
Potty training! Yes! It's going well! He is wearing big boy pants now all the time except for night time and nap time (when we get one)...
Well, that's it for now! Hope all of you are well!

Mama, Can you help me make an appointment?

Ummm... yes Ben. What do you need an appointment for? I need to build a house! Ok, I thought, does he really know what he's saying or has he just heard this before? Ben, who builds a house? A fireman!

This was our latest conversation. That's right, you heard it, a conversation. We've been having a lot of those! After weeks, even a month or so of just some really hard times, Ben is finally coming around a little. Last week was the best week we've had in a long time, and we had a great weekend. Lately I've discovered how sleep is the best "drug" for Ben. He's a totally different kid when he gets good sleep (at night and naps). Last weekend we went to Dallas for a short getaway... sorry most of you have probably already heard us rant about this... it was terrible. Ben was major OCD about the elevators, and we had given him cough syrup since he had been sick, and it had an adverse effect on him. He was totally crazy out of control. He would not sleep. We ended up coming home a day earlier (after we had paid for our hotel- it was that bad).

On the other hand, we are excited about starting some new stuff. Since attention (probably ADHD/ADD) seems to be our latest and most pressing problem, we are going to target that with a new supplement called 5HTP, and try melatonin for sleep. Maybe he is not sleeping as well as we think he is?? Hopefully these will help with attention issues.

The GI medication is working! We have seen great improvement in the poop department and Ben's buddha belly has started to shrink! Yay!

Ben can now write his name darn-near perfectly. Way to go Ben! He can also write other small words if we spell them for him. He is also learning how to read small words and recognize them- that's a 1st grade skill! Yay! Now if we could just get him to play with other kids on the playground.... :)

Until next time...

The results are in...

Hi all... well.... we got the results back from Ben's Austin procedure- the pill camera, endoscopy, colonoscopy, and biopsy. The biopsy showed some inflammation, somewhat abnormal, but nothing major. The pill camera, however, showed an entirely different story. It showed evidence of erosions, lesions, and ulcerations. Very small, mind you, like millimeter in size, but certainly there. There was also evidence of early Crohns Disease. This does not mean he will have Crohns disease later, but it is a possibility at this point. For now, he has been diagnosed with "Autistic Enteritis"- a bowel condition common in the autistic population. SO the treatment now is medication. He started on Pentasa, which he has been taking for a week now. Thank GOD we haven't seen any major side effects, so he seems to be tolerating it pretty well. He will take this 3X daily with food indefinately right now. He will also have to be scoped again at the end of 2008.
Fun stuff... We are fighting our insurance company on denial of payment for the pill camera portion- they still consider it experimental. Well... if we wouldn't have done this, we wouldn't have seen the source of Ben's problems! The pill camera can go in places that the scopes cannot. Yet another frustrating thing in the day in the life of the world of autism! Just think of those families that need the pill camera but cannot afford it and are not finding the source of their child's problem- and their child cannot tell them what hurts or what's bothering them. For that matter, insurance does not cover about 75% of Ben's treatments. I recently heard about something called Nick's Law here in OK, where they are trying to get a bill passed mandating insurance start covering autism related expenses. I mean it's in everyone's best interest, if we can't start helping these kids NOW, taxpayers will be paying for these autistic adults for the rest of their lives. hmmm....
OK, I'll get off my soap box now.

The good news is that we've taken Ben off of his Vitamin B12 injections because we've felt like it's been hindering his potty training. Every time he pulls his pants down he thinks he's getting a shot. The anxiety is traumatizing. SO we decided to stop and see what happened. It's been over a week now and we haven't noticed much difference. YAY!

Happy New Year!

I can't believe it's 2008! What a year 2007 was for us... sad to say, but I'm glad it's over and looking forward to 2008 being a great year for the Staffords! The last few months have been a bit of a blur, between Brandy having foot surgery and Ben having a colonoscopy/endoscopy/pill-camera done in Austin. We have really stacked up the medical bills! :) Most of you know that Ben had the scopes done, to investigate his ongoing tummy problem. He did so great! The facility we went to in Austin was fantastic- Ryan and I actually went into the operating room with him and helped put him under anesthesia- this was by far the worst part and hard for us parents to watch, but he was quickly asleep and the rest was pretty easy. The GI doctor is one of the most well-known in the country in terms of the autism world, so we were in good hands. He inserted a pill camera into Ben's belly, and Ben wore a recording device around his waist that recorded the pill cam for 8 hours. Very cool technology- of course Ryan was loving that! Everything looked great except for one area that had some "bumps"- they call that lymphoid nodular hyperplasia- it's really common in kids with autism- we are awaiting the results of the biopsy and results of the pill camera before determining treatment- probably medication. We are praying that this will clear up his tummy issues and possibly even address some of the autism symptoms as well. O how I pray...
We had a great Christmas- spending time with both families. Ben enjoyed Christmas, I think, it was a little overwhelming at times. He wasn't really that interested in presents, as we expected, but is enjoying them now. Lately we have been dealing with some behavior issues, mainly listening, minding, discipline, just getting his darn attention!!! Sometimes I forget that he's 3 and not 2! We are trying to find someone that can help us with some of these issues- if nothing else- help us with how to deal with him better- he can be a real handful!
It has come to our recent attention that Ben probably has ADHD along with autism. Ahhh... fun stuff. What's weird, is how similar they are. This is my next topic of research.

Now for the good stuff.... Ben has been talking up a storm!! He has been showing us stuff, sometimes even wanting our attention or help, and asking questions. I promise I will NEVER get tired of "What's that, mama?". It's like music to my ears. Yesterday he picked up a new toothbrush in the package on my bathroom counter and said, "This is a new toothbrush. We got it at Wal-Mart!" Yep, Ben, you're right! The other day, he drew a house on his easel, and told me he wanted me to draw "colored christmas lights" on the house. He is also close to writing his name and sounding out words. Now that's pretty cool!

Until next time!

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!