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!