I’m back from Boston!
This past week, our whole family attended the National Down Syndrome Congress’ (NDSC) annual conference. This is the third year I have gone. This year’s convention was held in Boston, Massachusetts. I can’t say enough great things about visiting Boston. The Boston area is so rich in American history! The kids did so well on the trip. My fears were Connor on the plane, Connor going to sleep at night, and Darah becoming overstimulated. Connor LOVED flying and went to bed like a champ. We didn’t have to put his crib in the bathroom like I thought we would, and we even got to keep the television on while he slept right through it! Darah did have one really horrific day and didn’t do so well on the plane trip home, but all in all, she did 100 times better than I expected! On a scale of 1-10, Connor got a “10″ and Darah got a “6.5″ after all was said and done. That’s not too bad!
The NDSC put on a great conference and I came home with a lot of information. I attended a workshop about gross motor skills post walking led by Pat Winders. Pat is a physical therapist who has done so much research on children with Down syndrome and how their gross motor skills develop. Another workshop I attended was all about Obstructive Sleep Apnea (OSA). Dr. Sally Shott is an ENT physician from Cincinnati who specializes in children with Down
syndrome. She spoke about treatment options and other related issues to OSA. I am excited to share all the information I have learned on OSA, but that will be saved for another post! This is just a glimmer of the education I received while I was in Boston, and I’m anxiously awaiting for the audio of the workshops I wasn’t able to attend.
Another cool thing that happened in Boston was meeting again and talking with Denise from eReadingPro, which is one of The Mom Crowd’s sponsors and the reason Darah is doing so well with her reading. It was great talking with her one-on-one and meeting her other half. We left the day she had her workshop, or I so would have been there! She’s a ton of fun! Actually, I spent most of my time with another one of our sponsors, Bethany, from The Polkadot Platypus! In the picture above, she is the second from the left. She’s my twin!
The very best part of my trip was meeting up with old friends and making new friends! I have made a
lot of online friends through an online forum for parents of children with Down syndrome. This group has been the most amazing family and has given me so much support and encouragement. I have formed some of my closest friendships from this online group and it’s been great to reunite with these friends in person! I was able to meet some people in real life for the first time. It was so great to see these pictures and personalities come to life! Darah’s extra chromosome and the internet has connected me with a very special family!
If you have a child with Down syndrome, I strongly encourage you to attend one of these national conferences. You will walk away with a wealth of information and will have made new life-long friends. Here’s some points to consider:
- Book your hotel early! We had to stay at a hotel across the street because the conference hotel fills up fast!
- Check with your local group to see if they provide scholarships or grants for families attending the conference. Some groups will pay a grant in exchange for you writing up an article for their newsletter on what you learned. Other groups will send their top volunteers to the conference! That is how I paid for my first two conferences! President Bush’s stimulus check paid for a chunk of this year’s conference!
- Make it a family vacation! There are grandparent workshops, a whole separate conference for individuals with Down syndrome and a separate conference for siblings of individuals with Down syndrome.
- If you are not able to attend, think about purchasing the c.d. from the conference and listening to the workshops!
2009′s conference will be in Sacramento, California from July 31-August 2. I’m booking my hotel as soon as they post the information!
Have you ever met any online friends IRL (in real life)? What was that like? Did you attend this year’s conference? What did you think?
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McKenna, your family is too cute! I am so glad you had a great time and Darah did well most of the trip and Connor too! Can’t wait to hear more!
I did attend the convention and I hung out with you! LOL I had such a great time and meeting friends IRL is the best. I don’t know where I’d be on this journey called Down syndrome if it weren’t for you and the rest of our gang. Hugs and kisses!
Traveling with children is always hard and I’m glad your kids did so well. I had never heard of Down syndrome until my godfather’s granddaughter was born with it and he told me that sometimes the condition is called Mongoloid, and not to be offended (you see, I’m Mongolian). Then as a biology student, I learned extensively about the genetics behind it. I’ve met some online friends in real life and all I gotta say is thank god for the internet.
The term Mongoloid is a historic term for characterizing people with Down syndrome. It is not really used in present day, as yes … it is seen as offensive.
@ Jojo- like Bethany said, the term “mongoloid” is not used in present day when referring to someone with Down syndrome. I had someone one time ask me if Darah was “a Mongoloid” to which I replied, “Nope, she’s American” and walked away. I think it is probably still lingering in only the oldest generations, because they were alive when it was a commonly used term. Since you have learned about the genetics of Down syndrome in school, another term for “Down syndrome” is “Trisomy 21″ referring to the third 21st chromosome. Another piece of trivia for you: In Europe and other parts of the world, the appropriate term is “Down’s syndrome” while in America it is “Down syndrome.”
Hi McKenna,
I want to start off by saying I love this website and visit it almost daily. I was wondering if you knew about other types of conferences for children with learning disabilities. I have a 13 yr old son that is learning disabled and also has a speech handicap. He goes to public school and is in ALE. With age he has progressed slowly but steady and it would be nice to meet other parents and/or support groups that have been through or are going through what I am.
Also on a lighter note, do you have any advice on traveling with little ones? We are going to Disney world in August and I will be traveling with a 13 yr old. 9 yr old, 23 month old, and a 10 month old. I am really worried about my almost two year old because he is like hell on wheels. Any advice from anyone would be awesome. I am really nervous and I’m afraid they are going to kick us off of the flight in mid-aid…. kidding
Thanks,
Amy
McKenna, thanks! I was aware of the Trisomy 21 term but I’m glad to hear Mongoloid is no longer used…because it kinda IS offensive when you think about it
Oh sorry forgot to mention that you guys have been awarded at BuddhaBelle!
darah is so precious! Thanks for posting the pics and your experience at the conference — very informative.
Hi Amy,
I am not aware of any other conferences, but KNOW they are out there. I would suggest talking to your special education team at school or therapists or if you have a developmental pediatrician he/she may be able to point you in a good direction.
As for traveling, I think you just cross your fingers! LOL! Here are the links to posts The Mom Crowd has written concerning travel: http://www.themomcrowd.com/category/travel
My number one advice for your 2 year old is to bring a portable DVD player and an extra battery! Also, make sure you give him time each day to get that energy out. Every day our kids got some “run free” moments that were planned. On our layovers, we didn’t put the kids in the stroller and just let them run free. That really seemed to help.
Hey McKenna AND Bethany! Great to see you both looking so alike at the NDSC Convention in Boston, lol. Don’t forget to get your photos on http://www.ilooklikeyou.com!!!