What is next?

So, we’re all caught up on last week. It’s time to talk…another trip, lol.

Monkey went to school today and after school Duhdee will drive him to Maine to spend the next 3 nights with his grandparents! He absolutely loves going to “Grammy’s house” and this trip will be extra fun, I think. Grampa is now retired and will be home allllll day. Grampa doesn’t have a “sit still” bone in his body, I am guessing Monkey is going to enjoy his adventure.

Our house guests from last week will be returning to keep an eye on things for us at home, mainly on my old dogs, one of whom is really starting to show his 15, going on 16, years. I feel so much better about leaving him when I know someone who loves him is there in case he needs anything. She’ll also be here to make sure the sidewalk gets shoveled should it need to be done…it’s also very nice to have someone around to do that stuff so Grampy is well looked after too.

Tomorrow, bright and shiny early, we leave for Advocacy Day. We will be joining 123 (at last count) other Fragile X advocates in Washington, D.C. We will have 4 1/2 hours of training on Tuesday and then on Wednesday we will visit our representative and Senators, or their staffers, on Capitol Hill and tell them all about Monkey. Our primary goals are to introduce ourselves and our little Monkey to them, to give them a face to put to this thing called Fragile X Syndrome and then ask them to support the National Fragile X Foundation’s goals for the year. It’s our first trip and we are very excited.

I’m sure I’ll be FBing like mad but I’ll update when we get back because, shockingly, there are some who don’t use facebook! Crazy, right?

Home at last!

Say you have a child who dislikes change. Say you spend 3 days of running around, shopping, moving around the normal household items and routines and *then* say you travel for 3 days. You spend 3 days completely away from home asking your child to travel, play with strangers, participate in tests and practice patience, of which he has *none*. Then say you finally get home. You’re back in your own space with your own stuff and your own dogs. What on earth should you do to celebrate this return to much needed normalcy??

How about you tear apart your child’s room? You put his bed into the basement for storage, you remove all of his clothes from his dresser and put the dresser in the dining room so it’s out of the way. You tear apart your room and move your bed into his room, realize that his new bigger bed won’t work in the same spot so you completely rearrange the layout to accomodate the dresser you’re adding too. Then move all his clothes into the new dresser, slap some brand spanking new sheets on the bed and call it a night. What do you think would happen next?

Would you believe that your child, who dislikes change, would jump happily into his new bed and only get out long enough to turn off his light?

Yeah, I wouldn’t believe it either if I hadn’t witnessed it Thursday night after we got home from Madison. He did wake up briefly in the middle of the night and came to find us resting, uncomfortably, on the sofa bed in the living room. He went straight back to his room though and went to sleep again.

I think he just came out to laugh at us in our misery…

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 []

Boston-Milwaukee-Madison

Shortly after I finished cleaning on Monday, my awesome niece, her friend and her corgi puppy all showed up to house/dog sit for us while we were gone. I stayed up wayyyy too late chatting with the girls. I never get enough of the two of them, they totally crack me up. So I was dragging buttocks the next morning and very, very glad I’d worked so hard the day before. After giving them a final rundown on the how’s and what’s, we left for the airport.

Monkey was over the MOON. He could *not* wait to go through the tunnels and see the airport and get on the plane and go flying! Do you see the hole in his plan? He left out one *eensy* step in the whole process…you know…security. Duhdee and I had said we’d call and get the escort to avoid waiting. It was absolutely in the plan. It was happening. Then we thought, “But he did so well the last time…”

Gah! IDIOTS! We were such FOOLS! Take the escort…every time..takeit! takeit! takeit! Clearly this is for me because you all are way smarter than we are *sigh*

The security line at Logan can be a pretty painless process. It can also take ages and make you want to pluck your eyelashes out. This trip was somewhere in between but with Monkey even “pretty painless” makes him want to pluck his eyelashes out. But we survived…and have vowed to not EVER do that EVER again. *deep breath*

Then we got to the gate and our 11:30 flight, which was still listed as “on time” everywhere, now said it left at 12:20. Huh? We had an hour layover in Milwaukee that was rapidly disappearing. Yikes! We quickly learned that the plane was not yet in Boston but that it was set to land at 11:30. They were going to get everyone off really fast, do a quick cleaning and then rush us all on board quickquickquick. We did make sure we would be able to pre-board and then we sat and waited and waited and waited for the plane. Monkey and I took a long walk and watched some other planes leave and then we went back to sit and wait and wait and wait for the plane to arrive. Finally, the plane arrived and it all went according to plan! We left nearly on time and with the tail wind arrived in Milwaukee on-time. Magic.

Once the waiting was done, Monkey was thrilled with the whole experience. He was happy happy. His face was lit up and we heard the best laughs. He is a really great traveler…if only there wasn’t so much *waiting* involved. We decided to grab something to eat in Milwaukee and of course that took longer than it should1 and we were still sitting when we heard the first call for our flight. Monkey and I grabbed our suitcases and headed for the gate while Duhdee dumped the trash. Monkey turned at one point and yelled over his shoulder, “Come on Daddy!” which just cracked me up.

The flight from Milwaukee to Madison is pretty much all take off or landing…I think there is 15 minutes of flying time, maybe? This is actually the perfect flight for Monkey…it was all the best bits without too much sitting time in between…not that Monkey minded the sitting when he had his “DDD” (DVD player) and his movies to keep him amused!

After a long day of traveling, and knowing we had a long day of testing ahead of us, we decided to order some room service and lay low. Monkey started asking for his dogs and saying he wanted to go home but once we got him some yogurt, *and* tucked into bed while he enjoyed it, he relaxed and did very well.

Tomorrow…the Waisman…

  1. A fifteen minute wait for a SHAKE? []

Whirling dervishes.

This past week has been an absolute whirlwind for us here at Chez Monkey. I don’t know about you but when we are expecting houseguests I suddenly feel this uncontrollable urge to wrap up every pending project on my wishlist before they arrive. Which explains why last Saturday morning I opened my eyes, looked at my loving husband (who was struggling to breath under 50 lbs of Monkey sitting on his head saying “Hiya Daddy!”) and said…”I think we should paint Monkey’s bedroom…”

Duhdee refused to get out of bed until I accepted the fact that he was not going to let me paint Monkey’s bedroom. He claimed we didn’t have time. I think he’s a wimp. Our compromise was that we would go buy the new bedroom set I had been eyeing. Once he reluctantly agreed to get out of bed with that task in mind for the day I broke the big news…the bed I wanted was at a store on the South Shore and since we would be in the general area it was only logical that we’d stop at IKEA too. Squee! Duhdee felt tricked, whatever. I was doing my “I’m going to IKEA dance.”

So last Saturday we spent 9 HOURS furniture and decor shopping. We got everything we planned and then some, as often happens when we go to IKEA. Anytime Duhdee moaned about not being able to feel his leg I reminded him that he could have just let me paint Monkey’s room and this could have all been avoided. *Snicker* Do not attempt to deny the Money, the Money alllllwayyyyys wins! He’ll never learn 😉

Sunday was kind of a let down for me. We had bought all of these amazing things but our bed could not be delivered until the following FRIDAY1 which meant all of my plans hatched the day before were for naught. Frustrating. So I turned my eye toward things that we could accomplish. Duhdee recently purchased a new surround sound system to replace the one I hate. I suggested that he hook it up since I was going to clean and we needed to move all the old speakers around anyway while I did that so we may as well just swap them out. Duhdee looked at me a bit wide eyed, asked if I was serious *crickets* and then set to work. I felt so much better. 6 hours later Duhdee was cursing my great, great, great grandparents for my very existance BUT the new speakers were so cute! And not in my way. Of course, now I didn’t have time to clean the living room but our bathroom was sparkly!

On Monday we did the normal day before traveling things like vacumming and steam cleaning the floors and furniture, going shopping to pick up odds and ends like a new suitcase for Monkey, all new towels for the house and new full sized Toy Story sheets for Monkey’s bigger bed (which he was inheriting from us.) It was a third straight day of busyness and stress before embarking on three days of busyness and stress…perfect. That is how everyone else prepares for a trip right?

I’m sure you’re wondering how the heck Monkey was holding up with all this madness and I am proud to say he was LOVING it. He loved bed shopping (he jump tested all of the mattresses at the furniture store before we made our decision), he loved IKEA (he jump tested all of the mattresses we had no intention of buying), he was thrilled when we told him he was getting our bed, he was ecstatic over the new Toy Story sheets and when he saw his new suitcase he said, “airport? airplane? fwying?” non-stop for hours. How is it little changes set him off majorly but this total upheaval was the most thrilling time ever? I wish I understood how this worked.

Next up, the actual trip…

  1. TODAY, yippee! []

Just when I think he cannot get any cuter…

Monkey has been pulling out all the cuteness stops this past week. He’s seriously in danger of getting EATEN UP because he’s been so darned sweet.

He has now started varying his nightly greetings. He no longer immediately offers me “choc-o-late?” when I arrive home1 but will now try new things most every day. What hasn’t changed is that he’s still running to the front door with something planned. Sometimes it’s a kiss, sometimes a hug, sometimes it’s a “Hi, Money…happy!” I just never know what to expect but it’s always good so I am excited to walk through the door each night to see what he has up his sleeve.

Each morning he coordinates our departure. I have to have my bag and my tea, his items vary. This morning he had Eggy, a little puzzle in a box like animal crackers come in, a Trader Joe’s gift card (that he was given by the cashier at TJs because he liked it so much) and plastic sheet in the shape of a heart he found somewhere. The card and heart were bound in an elastic he swiped from Duhdee’s desk. Some days it’s just Eggy and the puzzle, some days it’s Eggy and a slinky, some days it’s Eggy and my iPhone. What doesn’t change is every morning he says “Ready, Money?” and takes my hand with a big grin so we can walk down the stairs together to start our day.

Last night I asked him if we could read Elmer, which is one of our favorite books these days. We sat on my bed and just as I was about to read…the page…Monkey yelled out “Booo!” before I could, lol. He loves that book and we spent quite some time saying “Booo!” and then he added his own twist. On the next page the other elephants are all SO SURPRISED! and they’re all jumbled over the page with big eyes so Monkey added some commentary in the form of “Oww!” “Butt” and “Head,” it does look like the elephants fell over and landed in various ways so it totally makes sense. Not only did it make total sense but it was also HYSTERICAL according to my little man who could not contain his giggles.

And now today, Duhdee and Monkey took one of the dogs to the vet for a sick visit. This is what Duhdee reported:

Monkey stayed right with me and Copper the whole time. Walked right into the exam room with us and hung out playing Angry Birds on my phone! When the vet tech was ready to take Copper to the back for some blood work, Monkey got a little upset that someone was walking off with our dog and tried to follow. Thankfully we were able to hang out in the exam room waiting and he calmed down pretty quickly. As soon as Copper returned he ran to the door opened it for him and pat him on the head, saying “good boy!”

EAT HIM UP CUTE!

  1. Perhaps that says something about how stressed I was there for a while, eh? []

Woah, what happened here?

I swear I just updated you all yesterday, how is it Thursday? Better question, how is it the middle of damned FEBRUARY? Time is slipping away too fast for me. Gah!

First things first, I’ve decided to live. *Insert eyeroll* Duhdee is now deciding if he’s going to try the cold from hell on for size or not. I’m hoping for “not,” as is he. *fingers crossed* We have wayyyyy too much planned for the next two weeks for him to even attempt pulling off 3 days in bed.

Our new morning drop off procedure is working beautifully. Monkey’s teacher has been standing in The Waiting Place every morning and Monkey has continued to eye her suspiciously and then rush straight into his classroom. We say good-bye at the door and they encourage him to do his morning routine independently.

One really cool thing is that if Monkey misses a step, they are not reminding him. He is instead noticing what the other kids are doing and catching his missed steps independently. This is bodes very well for our next adventure which is looking increasingly like a mainstreamed first grade classroom with supports…exactly what we have been working for since Monkey transitioned to school at age 3.

We’re feeling cautiously optimistic that we’ll actually meet this goal with minimal resistance from the district. I never would have believed this back in those first days when we had to fight to just to get them to give him a chance to try an integrated setting. *fingers most definitely still crossed*

From a feverish addled mind.

After yesterday’s post I went to work1 and managed to stay upright for 3 whole hours. Everyone was amazed and, also, grossed out. This cold isn’t pretty. I called my husband to come and get me on his way to pick Monkey up from school so I was there when his teacher said two things:

  1. “I was so happy that you guys saw that he wasn’t looking for you and you just went with it!” At which point I interrupted her long enough to explain why yesterday had worked out so well, which she found hilarious. The new plan, choreographed Monkey herding.
  2. “He had a great day!” which was yelled at my back as I turned to run to catch up to Duhdee and Monkey. Monkey does not like to linger at school when Money is there.

I was so looking forward to seeing how this would all work this morning and then…this cold kicked my asp. I spent the whole night restless and feverish. Yay! I begged off from drop off (and work) fully intending to ask Duhdee how it went when he got home only..

zzzzzzzzz….

For hours. I only woke up long enough to think things like, “I wonder if this is what a hot flash feels like?” zzzzzzzzz “Oh, that show is over already? I didn’t even catch the opening credits.” zzzzzzzzzzzzzzzzzz… “I know this show will be much more likely to keep my…” zzzzzzzzzzzzzz…

So, I’m not sure how it went. I think maybe I’ll ask when they get home since it’s already time for zzzzzzzzzzzzzzzzzzz…

  1. After missing my train stop because I was so out of it. []

Completely ridiculous!

So. We just did our morning drop off.

The plan was that we’d do our normal drop off and his teacher would observe from a distance so that we could figure out the best place to transition Monkey. We wanted a location a that he was relatively comfortable in (so, not a doorway) and one that would not subject him to staring if he had a hard time. He is hyper-aware of being watched so I had little hope that his teacher was going to be able to find a location to observe from unobtrusively.

When we arrived at school I convinced Monkey to run with me a little to enjoy the “windy” day. Monkey loves wind in his hair! I looked around and did not see his teacher, I was thinking, “Wow, she did a great job of hiding!” I even thought that maybe she was observing from the second floor balcony. That all came to a crashing halt though when we walked around the final corner to his classroom and his teacher was just leaving the room. What the #3!!?

You could tell by the look on her face that she knew she’d flubbed up. She moved quickly out of his way so she wasn’t between him and the door. What she didn’t realize though was she’d just made the most brilliant move ever. One that could not have been planned. She moved into the space where Monkey normally gets “stuck”. With his teacher there, there was nothing left for Monkey to do but step on into the classroom.

Duhdee hung up his backpack and we kissed him goodbye just inside the doorway just like all the other parents. Now if we can just figure out how to choreograph this so she is stepping out of the door and into The Waiting Place every morning…