KC conference, what we got out of it

[momofrussell]

Warning...this will probably be long LOL

I will say at first I was overwhelmed a bit... since this was our first convention. It wasn't the convention itself but I think it was the hotel and all the fun stuff that is attached to the hotel, and the lay out... so I was overwhelmed a bit until I learned my way around. Kevin was a bit overwhelmed too.

Friday was our day for Dr. Capone and that Fri all day session. I hadn't slept that well the night before so I was a bit weepy and tired. We introduced ourselves and they started on the other side of the room and I started crying Most of the parents there who's kids had complex needs, were older kids....so basically Kevin and I were sitting amongst our future. There was one parent that brought their adult son, who sat there on the floor and stimmed with a stuffed animal. I hate to say it but I had a hard time with all of this. I kept crying and really had a hard time trying to hold it back. I don't WANT to see my future.. I am good where I am at right now! LOL So, I had to go outside and compose myself. It was hard but I got it back together.

Dr. Capone was good. As parents we all got to speak about our kids and throw things out for other parents. Dr. Capone is great at really wanting to know about your child and giving his input. We appreciated it. Even the parents were giving input to each other. A funny moment was when we were talking about how delayed his lang/comm stuff was... and how we try everything at school.. and two parents said "Have you tried PECS?" LMAO... Uh.. yeah... LOL

I was SO tired though that I ended up not coming back to the class after lunch, Kevin and Robin did.. but I took a nap.. by this time I was mentally and emotionally drained and just pooped.. so I napped.

Sat and Sunday's workshops were ok but I think what I was there for and seeking wasn't what I found. I am on a search for my detailed info on the Dual DX stuff and how to tap into Russell and we didn't find just that. So, I feel I truly need an Autism Conference to truly get a well rounded approach to Russell. We even did a Sunday workshop again with Dr. Capone and it was good but still a bit to broad for what Kevin and I need at this point with Russell.

We also appreciated the parent's sharing sessions. It was an hour and a half time with parents broken into various catagories. We did the complex needs one (after my nap LOL) and Kevin and I felt we GAVE out tons of support to other parents so that in itself was very fulfilling to us. There were two other moms sitting next to me that were crying (such a release to finally explain your child let me tell ya!) and we offered them some online support group info and our phone number and email addy. We also realized in this sharing session that NDSC really needs to keep doing this and if at all possible... MAKE THEM LONGER.. or more then one. I think for the ones with complex needs, you wait and wait for someone to connect with on an intimate level, so it was at the sharing session this happened. But by the time you get going that 1 1/2 hour time is done. You talk and connect with others outside of this but it's not the same. So I truly think they need to keep doing this.

Within the sharing stuff Kevin and I also realized there were some that had NEVER connected with another for various reasons...like they too felt they had the ONLY child with a certain major issue (i.e. profound deafness).. and we also realized they never knew about the online support groups like we all have here. I then spoke up when it was my turn, and shared about Russell and offered just how wonderul these groups are for support. How you don't feel SO alone and you CAN find others similiar to yours online.. and you don't feel so far away or alone. The gal heading the group let me write a few sites down and plenty of parents were taking notes! I hope they realize we are all out here for them!!!! THIS was important to me to reach out to them... at this moment, my weekend was fullfilled and it was only Friday afternoon!

Kevin and I also skipped out of one workshop when we realized what it was truly about wasn't for us. We ran into Dr. Capone and got to speak to him for about 15-20 min about Russell and this was WAY more worth any workshop!!! I truly wish we lived closer to this man. We told him about Russell, asked him some questions and it was a great conversation. He gave us some great things to think about.

I know from Dr. Capone and another gal that is part of setting up this stuff with NDSC that I spoke too, that they still are realizing the complex needs stuff and how our community needs more info and outreach to us parents. It's slim the stuff out there...even at the conference... so I hope we can forge ahead and get more info and help to the parents, us included! I don't mind getting to an Autism conference if need be, but it would be great to truly tap into the resources we have as a community and the studies being done.

I am hoping to get to Boston next year... and maybe dive into some different topics.. like reaching out to your community, ect... we even learned about DADS (Dads Appreciating Down syndrome) for Kevin!

It was great meeting everyone... on all the sites.. and then some really neat parents I would have never of met if we didn't do the complex needs stuff... there really wasn't a lot of us but we need each other in so many ways! And to everyone I met from the sites...it was AMAZING to connect IRL instead of online...it's a great feeling!!! We had some truly great moments.. and by Sat AM Kevin and I were relaxed and enjoying it all!

Ok... I know this was long... thanks for reading if you got this far!

A.

[ALLISA]

I would have been in the back crying right with you A !! LOL

I'm a crier, it's a fact....I'm trying REALLY hard not to.....but I need a techniqe to help keep it in !! Did they have a workshop on that ? How to keep your emotions in check and conduct an IEP meeting without the aid of a tissue box ? I know I could be much more effective without the waterworks.....

I don't have anything to say about the confernce .....BUT...... I KNOW I WILL BE THERE NEXT YEAR !! and in case you missed it in my other post....I am officially inviting everyone to an Uno party here !!

But anyways....I do want to echo what you wrote about online support.....I have said it many many times here and to various doctors and teachers....if it were not for THIS site and the wonderful parents who have shared their kiddos with complex needs....I would have never put the "2 and 2 together" and pushed for an eval to be done on Erin.

It never occured to me that a child could have Autism & Down syndrome....and appearantly didn't occur to her teachers, therapists, etc......BUT thanks to the honest, heart pouring posts here, I recognized my daughter in their children.....so thanks again to one and all...espeically you A.....you have given me more support than you could know......

Great....waterworks are here again....

I am attending an Autism Conference in the fall.....and I know for Erin, her "isses, delays, goals" wahtever you want to say are more centered on autistic issues and following those leads seem to point us in the right direction. More like Schmolland than Holland

[momofrussell]

Ok.. now I am fighting back tears reading your post! LOL Allisa, truth be told, there is a fine art to crying AND doing an IEP meeting at the same time.. I am one of the very few that can drop tears and not bat an eye and keep on trucking through my IEP meetings...there is a fine art to crying but not letting your emotions get in the way of the IEP...I've even had teachers and admins comment on how well I can do BOTH! LMAO

Where is the Autism conference you are going to? I saw one in Nov in Atlanta.... is that it? Or you doing one locally by you?

A.

[Emilysmom]

I'll try to be brief with what I got out of this conference, but it won't be easy...........SO much to see/learn/do in so little time!!!!

I signed up for the preconference entitled "There's No Place like Home to teach your child about sexuality". It was wonderful........and something I wish I had heard and thought more about many years ago!!! The woman was the mother of a young adult with Ds, and she has just written a book (Woodbine House) that will be available next month. I think it will definitely be one I'll order. I think she said the title is "Teaching Children with Down syndrome about Sexuality". She said Woodbine House was very specific about the need for the title to say CHILDREN, because that is exactly when the teaching should begin. Some of the things she said that really hit home to me were:
She asked the audience where most of US learned what we knew about sexuality. MOST of us said from our friends/peers. (Not that many of us in the group had parents who discussed it with us) And she said that for MOST of our kids with Ds, they will not learn accurate info from their friends (as if ANY of us got the accurate story from our friends) and really need us as parents to be open and honest about it and to have an ongoing discussion about the topic. And she really stressed the "ongoing" because of the need for repitition.
AND..........a HUGE part of our class dealt with PRIVACY. We talked about our fears regarding sexual exploitation with our children, and she made a very good point. Kids who grow up with multiple caretakers (parents/siblings/teachers/aides/therapists/etc) who help them with personal care, hygiene, etc do not really learn the importance of PRIVACY. They learn that it's ok for multiple people to see them naked. That has an impact on them when someone puts them in a compromising situation........they might tend to trust them because they have become accoustomed to having non-family members seeing them naked. And, it can increase the possibility for the child to have decreased modesty and to undress in front of people. (Like some of the kids we know who have undressed publicly in the past). She went on and on stressing the importance of teaching our kids about privacy. One example is that many times parents of young kids bring the child to the living room to get dressed.......faster, they can do other things at the same time, etc. She strongly encouraged us to make sure our kids learn that the bathroom and their own bedroom are the only places for being naked. AND, the most important thing we can do is to teach our kids to be independent with ADL's as soon as possible to limit the number of people having to help our kids and seeing them undressed. We also listened to a video by a guy who was teaching a class on how very important privacy for our kids was...............he was SO good! I'm going to look him up on the net and read anything he has written, as well as the book by the leader of the class I attended.

I totally agree with Adrienne..........I wish there was a way for the sharing sessions to be a bit longer. I was in a group of about 20 mothers of kids from 15-17 years old and we talked about things like: Driving, inclusion, riding a bike, independence, dating, etc. The stuff that is on our hearts and in our mind!!! There were times when a parent would say something that would be SO simple, and yet I had never really thought about it before.

The keynote speakers were very good too.................I had always wanted to hear Karen Gaffney's story, and she did a great job. She is VERY inspirational!!!

Another session I went to was on person-centered planning. The family who did the session had some GREAT ideas about that. They had sent invitations to 55 people to come for an afternoon at their house to discuss the future/goals/dreams/gifts of their daughter between high school graduation and when she started college. They had an amazing response and LOTS of people came, and spent the afternoon talking about how their daughter had enriched their life, and helping them to plan for her immediate future. I thoroughly enjoyed that session and learned a lot from it.

Ok..........that's just about it. Did I mention that MB did an AWESOME job with the conference? I was really amazed.........she was EVERYWHERE!!! She was at the pool playing relay games with the kids, she was "fighting fires" wherever they cropped up, and she was CONSTANTLY making sure that her Uno Mas family was happy and well taken care of!!!

It was WONDERFUL hanging out with everyone in between the sessions, at the pool, at the banquet, etc. Definitely a great conference!!!!!


Susan

[Emilysmom]

I have a few conference pics, and I'm looking forward to seeing the ones everyone else took. Where will we share them??

[CC]

THANKS A~ and Susan for sharing BUT I want to hear More Please

A~ could you get a little more specific bout what Dr. Capone shared on the dual dx, Pretty Please.

I have never ever been to a conference either but the time has come and Boston is already in my planner I love Boston Hmmm not sure weather to bring Chris or not, well I have time to figure that one out.

A~ I never got a puter till Chris was bout 6, I think it was and the first thing I typed in my browser was Down Syndrome and I found Mary T's site, anyone remember Mary, Bill and Spencer?? OMG we got so close and she was my savior all those years back. Then from there I met Ro who finally got me over here to Uno and I remember reading one of Robin's posts and thinking OMG she posts so honestly and Man oh man could I relate and between Mary and Robin I knew I was not alone in this world having a little boy that also had DS but was not the so called norm KWIM The rest is history as I have been here and only here and Chris is now 14

So I do agree with you girl finding an on line site made both Colin and I realize there are more like Chris then not and we are not so hard on ourselves wondering what we might of done wrong, Chris is just Chris, KWIM

I so hope this Dr. Capone will be at Boston

A ~ just a thought but when we had Chris to CHOP the Doc there that is supposed to be an expert in Dual DX said to me this is not new but new to being DX and talked a bout. She said even some other Docs disagreed with her still on this. Do you know if this was the first conference they have had this type of session? I am thinking the more it gets out there the better for all.

Anywho if you can share anymore that you learned bout the Dual I would LOVE to hear

Susan ~ I just got the Woodbine House Fall Catalog and they have the book Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality a Guide for Parents and Professionals by Terri Couwenhoven, M.S. Looks very interesting, says it will be out Sept. 2007 for $24.95
CC ~

[momofrussell]

CC... the pre conference was on DS and complex needs.. so it was ALL complex needs.. behavioral, medical, and neuro types of things. It was where parents could share and bounce things off of Dr. capone while he gives us his bits on our kids and on these conditions... sharing things like how sleep apnea, if untreated and un DX'd looks like ADHD, ect..

then on Sunday Dr. capone did two sessions.. one was for the elementary aged kids and the other was geared more towards teens and adults.. both on the dual DX and things like medication, which ones can help...different dx's like Autism, ADHD, ect...

So it was to teach us about the different complexities and possible treatments, ect.. but for me I wish there was on JUST DS/Autism and how to get in tune with kids. Maybe as the years go we will get more detailed at these things.

I wish he gave handouts so I could offer them to you.. but he didn't The compendium had some power point stuff in them.. but none for dr. Capone.

I think the complex needs stuff is relatively new but they did have this stuff last year at the Atlanta conference... and I know they will keep doing it so I am pretty sure it will be addressed in Boston.

I wish I could get more detailed for you.. but it was broad so some stuff didn't pertain to us and I didn't take notes on it. He did talk about 4 meds that I wrote down.. I don't have that in front of me right now.

A.

[Emilysmom]

Yep CC.........that's the one!!! I'm definitely going to order it. She taught six hours worth at the preconference, but kept saying "There is more on this in my book". LOL was it a way to sell more books or just too much info to put into the six hours???

[ALLISA]

cc said:

Anywho if you can share anymore that you learned bout the Dual I would LOVE to hear

CC ~

I haven't been to a conference or talked specifically about what the DUAL dx means for our kids.....but what I have done is research and read as much as possible about the Autistic Diagnosis ( Erin's is PDD NOS)

So reading about and meeting moms of kids with that same diagnosis is like walking home. ( they GET and UNDERSTAND why Erin is tipping over chairs non-stop and how frustrating and hopeless a feeling that brings)

I have taken the DS out of the equation and focus on only the Autistic portion of it. I guess my thought is if you have a child who is blind or diabetic......you need to research diabetes and blindness and not even worry about the DS part....I think they are SEPERATE issues and need to be treated differently not as a DUAL ( combined) issue.....does that make sense ?

Even though we call it a "dual dx"...they are actually very seperate pieces that have little to do with each other. When Erin recieved the PDD NOS diagnosis, they told me ( and shcool ) that her primary diagnosis should be mental retardation DUE to a combination of PDD NOS & DS......

So I don' think there is a "different" approach to our kids vs. kids with autism & no other disabilites.....

Have you visited any Autism Groups or forums ?......you all KNOW how much I LOVE uno.....but visiting Autism forums has taught me so much about Autism and that whole side of Erin. I have a forum I visit a lot...I'll send you a link if you like and you can see if it fills in any blanks for you.....there are some adults with Autism who post on there....and MAN when I say they blow me away with their insight it is AMAZING.....you know that young woman who blew everyone away with her Youtube videos and talking via her computer...she posts regularaly and has WONDERFUL
AMAZING insights and has taught me SO much......

It is defintiely a different journey than Holland, but I feel like it is double vacation....2 trips for one !!

[ALLISA]

emilysmom said:

I have a few conference pics, and I'm looking forward to seeing the ones everyone else took. Where will we share them??

YES, where are you sharing them I am dying to see them....please post ASAP !!

[momofrussell]

Yes Allisa, share the one site you go to. I am part of the Dual DX Yahoo group but I just don't go to it LOL

a.

[Jackie]

A ...just a suggestion...but you know after reading what you wrote...I think that if there could be...say a mid year mini conference put on by NDSC on complex needs of some people with DS that went more in depth...had professionals readily available...and more time for sharing it would be a good thing.

That way you could then come to a regular conference from time to time and not feel so driven to find things that met your individual needs. You would have more time to enjoy and participate in the fellowship of other parents. I think you would be a good person to either email or phone the NDSC headquarters and express this. I am sorry to hear this was all so hard for you.

I remember years ago that I wanted info badly too...not the same info you have need of...but I was obsessed in finding out about certain topics...I am happy now that we are at the point in Emily's life that we can just go...and relax and connect with old friends.

But I think a person like you would be really good at reminding the powers that be...that many people have kids who have complex needs and need more specific info.

I know its expensive so you might not be able to do all this every year...but perhaps they need to be aware of more in depth info in certain areas.

A...I just wanted to address your comments...I posted our experience under Robins post....Jackie

PS...Em will have her pic in the sexuality book...they emailed us several months ago about a pic they had in their files...I am curious as to how they will use it cuz it is one of her and her nephew who was 11 at the time...We told her about it and she said....YUK...not a sex book about me and Jordan...LOL.

[CC]

THANKS A

Hmmm I am wondering if maybe a visit to this Dr. Capone would be more beneficial for me then a conference

I'll have to see if I can get any info bout him on the web.

Allisa YES please do share what sites you go to. I too joined the Yahoo Dual Dx one but haven't been there in the longest time.

K, hope none of you mind me asking, asking very nicely here ;D

I get the impression what you all got most out of the conference was getting together with the other parents more then what the individual sessions shared. Is that correct?? Not that anything is wrong with that Just wondering as I have never been and trying to figure out if I want to go to the one in Boston and if I do would I be walking away with lots of info and references from the sessions

Not saying one is worth more then the other, just trying to get a feel for how it works.

THANKS for any more info one can share


CC ~

[Emilysmom]

CC,
I can answer that question for myself............I LOVED getting together with the other Uno Masers and meeting new people with kids who are Emily's age. Loved it! But, I've gotten together with a LOT of Uno Masers over the years and have met other parents at conferences, and I really think I have gotten to spend more time VISITING with people when I'm NOT at a conference. We had brief visits on our way to sessions, we had some time to visit at the banquet, we visited while eating, and during the way too brief time in the pool. I spent more time sitting in sessions than I did hanging out with people, and I loved being able to hear the speakers.....and I heard some GREAT ones!!! I came home with my mind FULL of all the stuff I want to pursue with Emily. And I have lots of info from notes I took, and websites I got in the sessions to check out. And, it was VERY helpful to me to watch all the other kids who are Emily's age. So, I guess the answer to your question is that even though I loved the whole weekend and all the people I got to see..........even if there hadn't been ANYONE there for me to visit with, I'd still be raving about the conference.

I hope that's what you want to know. I would definitely recommend seeing Dr. Capone. He is one of the BEST Ds "experts" I have ever heard.

Susan

[Emilysmom]

Just one more thing I heard at this conference that I never knew before: The speakers (doctors, teachers, therapists, etc who do the sessions) come to the conference at their own expense and are NOT reimbursed at all!!! I never realized that! So, it's even more special to me that we get the opportunity to hear from some of those speakers!!!