Next year's SBAA Conference is....

[Kari]

in Anaheim, CA at Disneyland.

Conference today was great!! I'm looking forward to the next couple of days, too. Unfortunately, it looks like I'll have to skip next year in California, but hopefully some of you will be able to go!

[delanie]

I would love to go there! How exciting! I missed out this year because of the baby being too young but next would be perfect.

[eng188]

in Anaheim, CA at Disneyland.

Conference today was great!! I'm looking forward to the next couple of days, too. Unfortunately, it looks like I'll have to skip next year in California, but hopefully some of you will be able to go!

I'm not sure what else you had written before you were edited, but this is good news. I can't remember the last time I did an SBAA conference, and I've not been inclined to go lately just because of fear of the unknown, I suppose. But I've taken the train up to Fullerton a couple times in the past year. Anaheim is one stop before that. And OCTA transit buses are pretty good.

I might give it another chance. But I reckon it's not right at Disneyland. Maybe Anaheim Convention Center?

[LillyPie]

Yay! This one I will make it to! I have made up my mind to definately go since I have many aunts and cousins to stay with right there no more than 30 minutes away! I am going to try and save some money for all the expenses, but if I dont save enough I will have a place to stay. I am so excited, it will be our first conference!!

[Dodger67]

The edit was just one letter in the heading: "SBA" can be anywhere, "SBAA" is clearly in the US.

[XoBLoNDiE85]

Hannah will just be turning 3 by that time....can we still go?? We are at disney weekly for about 7 yrs now haha! We will so be there if she can be a part of it!!!?

[Barb]

Awesome!!! Let's plan a SpinaBifidaConnection's meet up. This gives us plenty of lead time to get sponsors and such! But everyone is to plan on it

[LillyPie]

Sounds good Barb. Let me know if there is anything I can do to help plan. I am IN!!!!

[misty]

How do I get a sponsor? Are there people or organizations out there for this? Or should I ask my momma??? LOL!

[XoBLoNDiE85]

we are in!!

[LillyPie]

Misty, I was wondering the same thing. I was thinking of asking a few family members who own businesses to either donate or help out by allowing a cup for donations inside the business, but I don't know if its to much to ask of people ya know. I thought about maybe getting some restaurants to donate a free meal and some other stores to donate some other things and do a raffle drawing or something. My brain is storming! I am determined to get there next year!

[Kari]

Hannah will just be turning 3 by that time....can we still go?? We are at disney weekly for about 7 yrs now haha! We will so be there if she can be a part of it!!!?

They have Kids Camp for children. The groups were broken up by age (0-2yrs, 3-6yrs, etc.) Zach turned three Monday, and was in the Kids Camp program all three days. He loved it!!! One drawback to the Kids Camp is the price. It is the same price as the conference for adults. It's roughly $350 per person for the conference or the Kids Camp. My local association pays for the person with SB and a caregiver, but for the other three members, it would still be over $1000 for them to attend. That doesn't include travel/hotel. Zach had such a good time, but I must admit I am surprised it is so expensive for the kids. Nearly all of the people working with the kids were volunteers, many of them young teens. They also have a nurse onsite. However, she is only there for cathing. While that is nice, she was not allowed to give meds, feed through a G-tube, or anything like that, so many of us had to go back to the kids camp (in another building) throughout the day to do those kids of things. In any case, although we were paying for building space, I'm not sure what else we were really paying for besides the food.

All in all, conference was great! I had volunteered to work in the rooms, so I didn't get to choose which sessions I attended, but all of them that I attended were good, whether they applied to Zach or not.

[n3rdchik]

cool - we might go - it would be another reason to get on the West Coast. :-) It should be international - mustang Sal, Rodger, our new friend Claudia..... any takers?

[delanie]

I am praying and hoping I win the conference prize for the 4b4the4th fundraiser! This would be the only way I would be able to go (now that I just realized we racked up almost 15k in hospital bills for Angeliese). I am up to 2700 dollars from donations and I am on pins and needles to see if it is enough!

[Kari]

But I reckon it's not right at Disneyland. Maybe Anaheim Convention Center?

The brochure says....

SBA is pleased to announce its
38th National Conference
to be held in
Anaheim, California
June 26-29, 2011
Disneyland Hotel

And as Roger pointed out, it really should say SBAA, although none of the printed literature or website has the 2nd A. Maybe I'll email them about that. :Banane21:

[delanie]

So Kari, can you give up some insight on what new things were discussed at the conference that we may not know much of? New studies, equipment, researches, etc...

[Kari]

Quite honestly, as far as the medical side of things, I didn't hear much new info. I also think that the economy played a part in this year's convention, but the Exibitor's Hall had probably a third of the venders that were in Tuscon 2 years ago. It was just the basic medical supply companies for the most part. Not a lot of new interesting stuff.

It seemed to me that the focus of a lot of the presentations were about executive function problems in kids/adults with SB. It was also mentioned that they are usually associated with MM, and not lipo or SBO. I heard over and over about the importance of having a neurosych evaluation (not a school psychoeducational evaluation) at certain times - more specifically at about age 5, 12, and 18. At age 5, it's important to get a baseline for elementary school, around 12 as the brain is changing during adolescence, and around 18 for an adulthood baseline. Also, it helps with documentations for adaptations for college. Many of the sessions were recorded and will be on the website sometime soon. Here is a quick overview of executive function that I think is good and easy to understand. It's from an LD website, but it's the same info.

Executive Function Fact Sheet
By: National Center for Learning Disabilities (2005)

What is Executive Function?
"Executive Function" is a term used to describe a set of mental processes that helps us connect past experience with present action. We use executive function when we perform such activities as planning, organizing, strategizing and paying attention to and remembering details.

People with executive function problems have difficulty with planning, organizing and managing time and space. They also show weakness with "working memory" (or "seeing in your mind's eye"), which is an important tool in guiding one's actions.

As with other manifestations of LD, disorders in executive function can run in families. Problems can be seen at any age but tend to be increasingly apparent as children move through the early elementary grades; the demands of completing schoolwork independently can often trigger signs that there are difficulties in this area.

How does Executive Function affect learning?
In school, at home or in the workplace, we're called on all day, every day, to self-regulate behavior. Normally, features of executive function are seen in our ability to:

make plans
keep track of time
keep track of more than one thing at once
meaningfully include past knowledge in discussions
engage in group dynamics
evaluate ideas
reflect on our work
change our minds and make mid-course and corrections while thinking, reading and writing
finish work on time
ask for help
wait to speak until we're called on
seek more information when we need it.
These skills allow us to finish our work on time, ask for help when needed, wait to speak until we're called on and seek more information.

Problems with executive function may be manifested when a person:

has difficulty planning a project
has trouble comprehending how much time a project will take to complete
struggles to tell a story (verbally or in writing); has trouble communicating details in an organized, sequential manner
has difficulty with the mental strategies involved in memorization and retrieving information from memory
has trouble initiating activities or tasks, or generating ideas independently
has difficulty retaining information while doing something with it; e.g., remembering a phone number while dialing.

[delanie]

Thanks for the info. I will keep that in mind as Angeliese gets older.

[fran]

We will be there also. I really wanted to go this year but we had already made other plans before we learned the details. I am really looking forward to meeting some of you there next year!

[Shaywood]

how exciting! I live in long beach so ill definitely be there :)

[LillyPie]

Any updates about a possible SBC meet up? Before conference, after conference??

[NR's_girl09]

I'm new to this. What kind of sessions do they have for college age people?

[Summer25]

Not much. It mostly is for the parents and kids. They do some adult stuff like independent living and sex talk, but all the others are geared toward children.

[angel]

Having been there a couple of times the adult stuff is nothing compaired to getting together with the other adults after the sessions are over. That is where you find out the real deal about everything. Exchange stories, experiences, solutions and it is a lot of fun!! I have never gotten anything out of the sessions but i have gone to the patio or bar (depending on what the hotel has) afterward and felt better about everything SB related!! I have made some of the best friends i have ever had there as well.

Angel

[Kari]

Not much. It mostly is for the parents and kids. They do some adult stuff like independent living and sex talk, but all the others are geared toward children.

This year, I felt like a lot of it was geared toward the 16-24 age range - how to transition from high school to college, living on your own, etc. I was a volunteer and didn't get to choose which sessions I attended, but a lof of the sessions I was in were attended by young adults with SB.

[Lifeisgood]

Having been there a couple of times the adult stuff is nothing compaired to getting together with the other adults after the sessions are over. That is where you find out the real deal about everything. Exchange stories, experiences, solutions and it is a lot of fun!! I have never gotten anything out of the sessions but i have gone to the patio or bar (depending on what the hotel has) afterward and felt better about everything SB related!! I have made some of the best friends i have ever had there as well.

Angel

Note to self...If I ever go to this conference, don't pay the conference fee...just go to the bar afterwards and find my peeps there.

Thanks Angel! ;)

[Dodger67]

Be careful around Angel, she has been known to pour tequila down your throat while swopping "war stories".:sign0020:

[angel]

lol dodger there you don't have to pour anything down anyone we are all there partying together. And that is exactly what i am going to do next time. I am going to skip the sessions and just go to hang with the friends i have made. I learn so much more from them. The doctors know some things but it is the adults that have lived with it, been through the fire personally that are the experts.

Angel

[LillyPie]

I would love to go to a session taught by an adult with spina bifida. IDK if they already do because I've never been to conference but I think it would be more interesting to hear from someone living with SB than a DOC who has never experienced it themselves.

[n3rdchik]

Totally agree!

I would definitely attend a session/panel of veteran perspectives!

[LisaJoy]

Totally agree!

I would definitely attend a session/panel of veteran perspectives!

Ya'll should communicate this to SBAA -- maybe they would act on it.

[angel]

There are some presenters that do have SB. Different ones on different subjects. I have a bit of an issue with some of the things i saw while i was in some sessions so i don't care to go to them. The first conference i went to i was just absolutly pissed off about some of it. It was my first exposure to a large SB community. The people i met were not included but i could go on for days about the things i saw and heard that i really didn't like.
As someone living with SB and knowing what i know, i was really let down by a lot of it. Not the presenters just some of the material in general.

Angel

[eng188]

There are some presenters that do have SB. Different ones on different subjects. I have a bit of an issue with some of the things i saw while i was in some sessions so i don't care to go to them. The first conference i went to i was just absolutly pissed off about some of it. It was my first exposure to a large SB community. The people i met were not included but i could go on for days about the things i saw and heard that i really didn't like.
As someone living with SB and knowing what i know, i was really let down by a lot of it. Not the presenters just some of the material in general.

Angel

I'm kinda hangin'. What were the worst things, if I may ask?

[usolyfan]

Totally agree!

I would definitely attend a session/panel of veteran perspectives!

There is a doctor on the national board. He has SB and spoke at our local SB conference this year.

[angel]

I had a couple of really big ones. My first one was the focus on volunteerism. I volunteer and have done so wherever available for years but i have also worked and earned a living. What i didn't understand was why isn't there a focus on employment. I mean there is a HUGE unemployment epidemic among the disabled and to me that was something and is something that absolutly should be addressed. I mean if you can get out and do all this work volunteering then why can't you get out and do some work and get paid for it. I addressed those concerns to a few people and won't mention names as they are higher up in the association. I was told they totally agreed with me that should be the focus however it tends to upset the parents, and the parents are the ones that pay the dues to SBAA. I was floored!! It was more about not upsetting the apple cart than actually making life better and more productive for those actually living with it. I didn't raise a stink because they would have just denied they said it but that is exactly what i was told! After that i had no intrest in being associated with the SBAA.
I went to the adult day and we had a session with just adults with SB. Well the announcement was made that if you DO NOT have SB you must leave the room. You would not believe how many parents refused to leave. They would not let thier adult children be adults and i almost lost my s*&% completly when they parents started speaking up for thier ADULT children. When they tried to speak the parents would over ride them and just start talkin for them. If it were me i would have refused to start the session until it was only people with SB in there. It is easier and more comfortable to talk shop when you are all in the same boat. There were a few other things but those were my biggest.
There was also a general vibe that i didn't care for. I believe we are all the same, we are people just like everyone else and we should work more tword inclusion than exclusion. I can't remember a specific example this early in the morning but i remember speaking up several times saying we are more alike than different.

Angel

[Dodger67]

What kind of parents actually want their children to be unemployed? :33a:

[misty]

Perhaps parents whose children get SSI or some other benefit that decreases if their child works too much? Just a guess.

[angel]

During that conference i saw what i thought could be a number of reasons. Some were worried their children would loose benifits. That is a legitimate concern if they don't have the skills to get a well paying job. That is why higher education is so important.
Some of them won't let go of the idea that their child no matter how functional they are, how smart and how capable is just to sick to be without them. I saw MANY adults that should not be treated like 5 year olds but totally were. One mom overheard me talking to her son (who was damn near 50) and he was saying how he wanted to get out from under her and go have some sort of life, get a job, find a girlfriend, i told him there is no reason he can't and she came UNGLUED!!! She clearly enjoyed having control over his every word much less action. Not all are like her, some are legitimatly scared that their child just can't handle the "normal world". I saw a lot of that.
It is rare to see the parent that will just let their kid go do what they are gonna do be what they wanna be and not hold them back no matter what they want to do.
I am not bashing parents at all i understand how it is to want to protect and it is an instinct that can not be shut off. It can be controled for the benifit of the child. Some really did try to understand, some couldn't care less.

Angel

[Kari]

I had a couple of really big ones. My first one was the focus on volunteerism. I volunteer and have done so wherever available for years but i have also worked and earned a living. What i didn't understand was why isn't there a focus on employment. I mean there is a HUGE unemployment epidemic among the disabled and to me that was something and is something that absolutly should be addressed. I mean if you can get out and do all this work volunteering then why can't you get out and do some work and get paid for it. I addressed those concerns to a few people and won't mention names as they are higher up in the association. I was told they totally agreed with me that should be the focus however it tends to upset the parents, and the parents are the ones that pay the dues to SBAA. I was floored!! It was more about not upsetting the apple cart than actually making life better and more productive for those actually living with it. I didn't raise a stink because they would have just denied they said it but that is exactly what i was told! After that i had no intrest in being associated with the SBAA.
I went to the adult day and we had a session with just adults with SB. Well the announcement was made that if you DO NOT have SB you must leave the room. You would not believe how many parents refused to leave. They would not let thier adult children be adults and i almost lost my s*&% completly when they parents started speaking up for thier ADULT children. When they tried to speak the parents would over ride them and just start talkin for them. If it were me i would have refused to start the session until it was only people with SB in there. It is easier and more comfortable to talk shop when you are all in the same boat. There were a few other things but those were my biggest.
There was also a general vibe that i didn't care for. I believe we are all the same, we are people just like everyone else and we should work more tword inclusion than exclusion. I can't remember a specific example this early in the morning but i remember speaking up several times saying we are more alike than different.

Angel

Angel, I think the "higher ups" are listening to you! Like I mentioned before, several sessions I was in focued on living independently, job coaches, going to college, living with roommates, choosing a carrer, etc. Also, my friend was a volunteer in a session where the second half was only for adults with SB, and they refused to start the session until all without SB left, including the volunteers.

[angel]

Well i am glad they are doing something about some of it. I was so unbelievably pissed off by what i saw it just ruined me on the whole experience. I don't think i will ever pay the fees for the sessions ever again but i am glad to know that there are some improvements!

Angel

[AmandaP]

Hey guys!
I live in PEI Canada and I've been wondering if Canada does a SB conference? My family would love to go to one but we don't have the money to be travelling so far.
Can anyone let me know?

[Dodger67]

According to their website the Spina Bifida and Hydrocephalus Association of Canada annual general meeting is in 2 weeks time in Winnipeg, Manitoba. http://www.sbhac.ca/beta/

Contact details for the provincial divisions here: http://www.sbhac.ca/beta/index.php?option=content&task=showblog&id=72&Itemid=90