The Waisman Center and Home Again!

Monkey is participating in a study at the Waisman Center called “Social-Affective Bases of Early Word Learning in Fragile X and Autism.” We had our first visit in August of 2009 (which I posted about here and here) and this was our follow up trip. I believe they’re still recruiting if you’re interested in participating. There are some really fantastic people working on this study and we enjoyed our time there a lot…except for that blood draw *ahem*

On Wednesday morning we showed up bright and early for our only full day of testing. Monkey had a tough time transitioning into the room but the researchers were fantastic. They let us do what we needed to do to calm Monkey down1 and once he was settled we were able to go to the observation room and watch the proceedings.

Monkey did *amazing* they were running through some standardized tests and he demonstrated some mad skillz. He knew words we had no idea he knew. He looked at the pictures and scanned through them for the right result. He would sometimes give a quick “no look” answer just to get to his reward but they gave him a moment and he’d go back, look and give the right answer. Sometimes he would point to the wrong thing and say “No” and then point to the right one.

In addition to vocabulary, they were looking at grammar development. Monkey has come a very long way in the last year and a half. He’d only really been talking for 9 months at the time we went for our first trip and was primarily labeling objects and using nouns. His progress has been astounding, he was using “ing” words and demonstrating a really high level of understanding of other grammatical concepts. One thing that is still giving him trouble is the embedded negatives “Which one is not red?” leads him to identify the red object about 80% of the time. It’s actually a goal in his current IEP that the school is working on with him.

One thing that really impressed us too was how hard he was willing to work. He was in a room with people he had met back in 2009 and doing standardized tests…not generally the best time ever….but he did it and he kept working at it even when it got hard. He did not ever refuse to do something they asked. As long as he was given a reward or a break he kept trying. It was so very amazing.

After our long day we took Monkey back to the hotel for a nice swim. He initially did not want to go, he argued with me while I was putting his swim trunks on him though he didn’t fight it. When I got there he was screaming with joy and was so thrilled to see me. We stayed in the pool “flying” and “bouncing” until Monkey started telling us “hungry?” We went back to the room and discussed our dining options. I really, really wanted to go back to The Great Dane Pub and they have even opened a new location but Monkey put an end to that by grabbing the telephone saying “Hello? Chicken? Chicken please?” Hotel dining room it was.

After we finished dinner Monkey took off ahead of me looking for our room. I walked behind to let him do his thing and he *found* it. I was so very impressed. He is really into numbers still and always tells us numbers he sees (like in elevators or on receipts or menus.) We had told him we were in room 1 5 0 and he was able to find our room unprompted. I wasn’t sure at first how he’d located the room but once I watched the video clip I took of him (I was actually trying to video him running down the hall but he stopped as soon as I got the camera out, typical.) I saw that he was scanning the room numbers. Way to rock, Monkey!

The next morning we were back at the Waisman Center for more fun. This final day was much shorter, only a couple hours, and more play based. Monkey worked super hard on a brief standardized test and then we did an eye tracking test which meant he got to watch some strange videos of puppets. He had a totally confused look on his face the whole time but he watched both sets of videos and impressed the researcher. After that was ONE last task. Monkey had to play with me while they videotaped it from another room. Monkey has this weird ability to recognize cameras and seems to always know when he’s being taped, he kept looking at the camera in the eye tracking test too. It was a little hard to engage him at first but once we got rolling and playing we both lost track of time. The next thing I know Duhdee is knocking on the door with our coats and the shuttle had already been called. The best kind of fun to end the trip.

The trip home was a little more stressful because we were rushed to make all of our connections. Also, remember that little bit about always taking the security escort? We didn’t do it…it’s just Madison, after all. OMG! WE WILL NEVER LEARN! Take the security escort!! Arghhhhhhhhhhhhhhh!

Anyway, we did not set up our flights and had never flown Frontier before. On one hand the warm cookies were awesome but on the other hand they seem to cut their schedules too close at times and one little thing (like having to de-ice the plane) can set off a chain reaction of delayed flights and missed connections. We made all of ours but it was close, not the best situation for traveling with a child with special needs.

Monkey was a happy, happy camper on the plane for the most part but our final descent into Boston really bothered our ears…we were all 3 pretty uncomfortable and that’s never a good combination. We found a fantastic cab driver, he drove me to the airport when I went to Canada, and we’ll use him from now on. It was really nice to have a van waiting for us at the limo stand. I don’t think any of us could have taken another wait…it was time to be home!

Tomorrow I’ll tell you how WE celebrate the end of 6 days of non-stop busyness and stress in this household…

  1. He just needed some deep pressure and time to acclimate []

8 thoughts on “The Waisman Center and Home Again!

  • February 27, 2011 at 9:40 am
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    thanks for the info i just signed up again. My daughter is excited about helping people learn more about fragile x. Jake will just be excited for the airplane.

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  • February 27, 2011 at 9:43 am
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    Airplanes are GOOD things to be excited about!

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  • February 27, 2011 at 10:13 am
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    we havent flown sine he was an infant but he likes trains and trucks so i am hoping it will apply to planes. Maybe a trip to tthe airport first to see everything

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  • February 27, 2011 at 10:19 am
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    This is a good way to test it too…since they pay for your airfare and expenses there is less pressure to have a *perfect* time…at least that’s how it was for us.

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  • February 27, 2011 at 11:59 am
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    yep we were supposed to go this past week too but my work schedule made it impossible if i get this new job i will have more time off and they are pro research

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  • February 27, 2011 at 2:18 pm
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    We could have been research buddies 🙂 Madison is way more fun in the summer, IMO, so it might work out better if you go later this year. August can be pretty brutal though, we had 90 degrees and high humidity our first trip!

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    • February 28, 2011 at 11:42 am
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      Hi Melanie! I sent you an e-mail earlier. Finding other families living with Fragile X has made a huge difference in our lives. Meeting people you can connect with in real time is huge, to have someone to grab a coffee or dinner with makes a world of difference…and of course there are our online communities too that are so meaningful to me and my husband…feeling alone and isolated makes it all so much more difficult emotionally.

      Reply

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