Perspective Gained:
WOW…..If there was one word to describe my experience, “educated” would be it. I never imagined returning from Indy with this much of a better understanding about Down Syndrome. I did expect to have a little more understanding, but never had I imagined this much. I wanted to go to this convention to gain knowledge on how I could better understand things like; Behavior, why speech is so difficult, the medical issues in Down Syndrome, and the best ways to teach my child and those around me with down syndrome to learn. I feel like I seen the TRUER identity of Down Syndrome and not the misconception’s as I have been told.
This being my first convention to attend I went solo, leaving my husband and daughter at home with the assistance of Grandma (oh do we love grandmas). As for the initial thought of going I figured it would be easier to focus on the materials if I didn’t have to worry about the distractions of, how is the family doing and should I go check on her, constantly being in the back of my mind.
I was wrong.
Not having my family was the hardest part for me. I seen so many little kids and babies and each time I would think of Brooklyn my sweet little rascal, and I’d think, “dang I wish she was with me.” Often times I would talk with families and as Id turn to walk away my eyes would swell with tears, unwillingly they would flood. Other times Id be in the middle of a class and think of her and it would happen.
I had no idea this could happen, especially to me. Seriously!!! I have traveled alone numerous times (not since being a mom) and things like this never have happened before. I truly think I got home sick, and I didn’t think that was anything real either. I managed to get through Indy without too many tears by having gained great friends through the Internet whom I met there.
Friends Gained
With the support and encouragement from specifically 2 moms that I have been Lucky enough to call friends for sometime now in what we know only as an online virtual world. Launa, Michele you girls ROCK 🙂
See there is really something magical about the internet. I have been in this group on facebook, Actually I am in many amazing groups on facebook and have become “friends” with so many amazing moms. These moms give a kind of support that I NEED, a kind of support that is so vital to simply getting through to the next day sometimes, a kind of support that is hard to get “in real life.”
Until being at the convention.
HELLO!!!!!! to my beautiful mom friends!!!. You are all just as amazing in person as you are on line, and Brandi next year Brooklyn can meet Seth (hoping we go again). I had heard the term “family Reunion,” prior to going to this convention and I can see why people say that. I feel this convention is something that families really look forward to. A place where friends become better friends and families really do create life long memories. A Place where online friends who you have cried many tears with, can meet and give you a hug. In. Real. Life.
Knowledge Gained:
Paula Kluth
Some classes were very packed.
My Primary focus clearly was how to educate myself to help my daughter. But I gained knowledge that I feel if I keep it to myself that i’m being selfish. So Id like to share with you little tidbits of what I wrote down and remember..
Behavior, Speech, Gross Motor, Reading and more….
{REMINDER I AM ONLY A PERSON TAKING NOTES}
Behavior
“The only way behavior is reduced is to replace it with something else”
- -look at what the action before the bad behavior is and try to find a trigger
- – create or teach a behavior that you want to see by reinforcing the positive behavior as good behavior
- -find what motivates your child to behave correctly and continue to reinforce
- -don’t put child into timeout put their favorite possession into timeout, ie, doll, truck, bear, blanky. your not giving the child any chance to learn the lesson while sitting in a corner.
- -Educate and reinforce the correct behavior you want to happen.
-2-to-1 Rule for every behavior we decrease with punishment we must increase at least 2 alternative behaviors with reinforcement
if you need a certified behavior check this website : http://www.bacb.com
-recommended to look up behavior phenol type (down syndrome)
Gross Motor
- -one of the reasons why physical therapy is so important is to minimize the development of abnormal compensatory movement patterns that children with down syndrome are prone to getting.
- -Feet first, it’s highly important to watch for even the slightest pronation. Giving the child support gives the child confidence for walking and talking.
- -physical therapist should also be trying to build your child’s strength in the appropriate muscle groups so your child develops optimal movements.
- -Posture has so much to do with speech articulation because how the body aligns plays a major role in how you speak correctly.
- -Inclines are great for building ankle strength
- -When a child is sitting keeping their feet from dangling helps to reassure confidence.
- Physical therapy isn’t a tool to help your child get to a milestone faster, it is a tool to help your child learn and build correct muscle core strength properly.
- Here are a few post walking skills we will be working on: walking uneven surfaces, up and down curbs, fast walking, and balance beam, bouncing, and squatting.
- Pronation is the main cause of instability, even the littlest bit can make it hard to walk.
_check out Be beautiful be yourself dance program
Speech and Reading
- -To learn there must be opportunity to learn, give time to answer
- O.W.L (observe. wait. listen)
- -start with 5 mins a day playing the matching game.
- match picture to picture, then learn picture to word, then learn word to word.
- Using an alphabet strip that is letters only helps a child to learn the letter without the distraction of a picture with the letter
- Be clear with letter pronunciation its vital to teaching language
Phonological awareness skills (phonics)
ABC Phonics Animals writing
Zoo Phonics http://www.zoo-phonics.com/
Smarty Ears Custom Boards
http://www.alphabetsoupomtherapy.com/
OVERALL HEALTH– while there someone told me that the reason so many become over weight is because once puberty starts the metabolism drops. I am not sure how much if any truth there is to this but it makes a little sense but This is information I wanted to share and try and get input and feedback on. It something ill be doing research on.
Conclusion
I know I could keep sharing my notes but really I am not sure how useful my chickenscratch is to anyone and or if it makes sense so I’ll conclude with this:
I GAIND a peace of mind and better understanding on how to give my daughter the best tools to help her grow, learn, and be the best person she can be. I will highly recommend going to a convention if you can and I too will be trying to go again.
Thanks for reading and now here is a few pictures I took while there its people I met and some great organizations to look into…
Star David and the Producer of the movie Milan Chakraborty from the movie Produce: Where Hope Grows
https://www.facebook.com/ProduceTheMovie
I asked David,” what was the best part about doing the moive?” and he responded with this “when ever the ladies look at me I get lost in their eyes.” < – – > it was really a very sweet comment so I asked him to write it on a card and sign it….and He did. 🙂
Come on now you know you want one… 🙂 JW Marriott had a great little sports bar with awesome bartenders.. :)*
Great corner view room
I won this from the Angels in Disguise booth drawing. Dan and Penny both great people. https://www.facebook.com/SupportTheSmile
And….
I picked up a cute little shirt from the https://www.facebook.com/DownSyndromeDiagnosisNetwork for Brooklyn 
I do what I do for you my child… ❤
And can’t leave out getting a hug from this guy
Tim 🙂
https://www.facebook.com/timsplaceabq
Also lastly I can’t leave out Stand up for Downs https://www.facebook.com/StandUpForDowns These guys were just overall good people to talk to and funny. :)P
I met some outstanding people with down syndrome while there and it was an overall great experience. David is a movie star, Tim is a restaurant owner, and I met a clothing designer Ashley DeRamus www.ashleyderamusfoundation.org
I seen adults with down syndrome being independent, being in love (that was the best for me) being themselves seeing that people with down syndrome lived “normal” lives, like you and I. Overall I was truly inspired and set at ease for Brooklyn’s future. I was educated and given some great tips and tools to work with.
Thank you NDSC and every one of you amazing ladies who I have connected with on line and now in person.
A Life Created T21 