SLOW YOUR ROLL...

Q&A time...

Do you have an overflowing Outlook calendar?  Would you be lost without your phone or computer beeping at you or popping up a reminder when you have something to do?  If you're like me, the answer is yes.

Do you juggle the needs of your kids based on YOUR schedule?  Do you eat dinner at a different time every night based on working late or your kids' activities list?

Are your kids (or are YOU) sluggish, grumpy and irritable in the morning and evening?  Do they fall asleep in the car (younger kids) or want to nap immediately after school (older kids)?

Like most families these days, things vary greatly based on who needs to do what or be where when.  Unfortunately, many children end up feeling "lost" without a predictable schedule.  This is even more true when it comes to children with special needs.

Zeke has always been pretty easygoing when it comes to routines - he is very easily able to switch gears depending on what the day has in store.  He is like his mom in that if he doesn't get enough sleep, he's a grumpus in the morning, but otherwise, he adapts well to change.  He has always been able to communicate with us when he is struggling with something, and we have been able to accommodate his needs.  Last night he was up too late, and this morning he c

But Sylo is a whole different enchilada.  Since he is delayed in the communication area, he's had a hard time telling us when he is unsure of or upset about something.  We've had to rely on his non-verbal clues more so than his "whining" when something wasn't going his way.  We've had tremendous amounts of help in this area due to the amazing therapists he's had over the past 3 1/2 years, and we've had a lot of help in figuring out how to eliminate the whining.  Actually, it was pretty easy - a few simple schedules and we've seen dramatic results.

The morning is pretty easy for us with Sylas and with Zeke as long as he gets a full night's sleep, but the evening routine was killing us because we wanted to kill our sleepy kids (not really, but you know what I mean).  So we created a night time routine for both kids (I'll post it below).  We have it hung in the kitchen and in Zeke's bedroom in words he can read, and we have a picture schedule in Sylas's room.  After less than a week, we began to notice a difference in both kids.  If he goes to bed half an hour or more later than his scheduled bedtime, Zeke is grumpy in the morning and resists everything from brushing his teeth to getting dressed.  Once he is awake for half an hour or so, he is fine, until the end of the day where "Mr. Grumpus" shows up again.  But when he sticks to the schedule and gets a full night's sleep, he is the funny, smart, ungrumpy angel we know and love!

Sylas has some sensory issues that sometimes interfere with his attention span and ability to transition at preschool.  We found that a 5 minute "rub" with lotion on his hands, arms and feet seems to calm him down tremendously before bed and in the morning, so we added this to his sleeping and wake-up routines.  He has moved forward from parallel play to interacting daily with his peers, he can sit through most of circle time and now eases from one activity to another.

My advice?  "Slow your roll", create a schedule and stick to it!  Are you thinking... HAH, IMPOSSIBLE!!!!  Well, I did too, but we tried and it worked.  We try to stick to within an half hour of the times for all things.  It's working very well, even on the weekends.  And we now seem to have some time leftover for ourselves!

Night Time Schedule

6:00 Dinner

6:30 Family Clean Up

7:00 Bath Time

7:30 Zeke Story

7:30 Sy Independent Time

8:00 Zeke Bed Time

8:00 Sy Rub/Story

8:15 Sy Bedtime/Music

SPEAC Program on DUAL EXCEPTIONALITY - Tuesday, April 24, 2012, 7PM

 

Please join the Special Education Advisory Council (SPEAC)
and the School District of Upper Dublin
for an informative program on

DUAL EXCEPTIONALITY

on Tuesday, April 24
7 PM
The library at Maple Glen Elementary School



Dual Exceptionality or twice exceptional is the term used to describe a child who is not only gifted but has additional learning difficulties or a disability which can make it difficult to identify their high intellectual ability.

The guest speaker, Felicia Hurewitz, Ph.D., received her doctorate at University of Pennsylvania, and is currently an Assistant Professor of Psychology at Drexel University.  She conducts research on language acquisition, mathematical representations, autism and the use of technologies for learning, and has published on special education and the legal rights of children with disabilities.  She was a founder and board member of Pennsylvanians for the Education of Gifted Students (PEGS), a nonprofit, and is on several other special education boards and advisory panels.  A particular area of interest and advocacy for Dr. Hurewitz is in assuring an appropriate education for twice exceptional children. 

For more information about this program, please contact Karen Salomon, SPEAC Co-Director, at ksal@comcast.net.

Please join us for coffee, conversation and information.

Upper Dublin teachers who attend this program are eligible for ACT 48 credits.

ARE YOU IGNORING ME???

Sylo (his new nickname) is a kid who doesn't talk that much yet, and when he does, we don't often understand what he's saying.  But he has inflection, stress in the appropriate places to denote the type of speech he is using (question, story-telling, exclamations, etc.).  He watches Wow Wow Wubbzy enough that he has been starting to interject "aaaah"s (like when he knows a crusty cragasaurus is about to show up) or a "hop hop hop" in tempo with the song, "Hop hop hop do the happy hop".  He also knows the answers to certain verbal prompts, like, "what do you want?" (answer: "uuh", with hands raised to mean he wants to be picked up, or "rink", with hand to mouth).  He also doesn't respond to me unless he "feels like it", which is a boy thing I've learned from my other boy, but I often wonder if Sy is understanding me or ignoring me.  Some days I don't know, but Sylo has surprised me on several occasions this week... check it!

1. On Wednesday, we had our biannual trip to the dentist, and we arrived early so my older son, Zeke, could play the PlayStation in the waiting room.  It was 3:30, so the place was packed with kids and parents alike.  Sylas used that to his full advantage, walking around saying hi to everyone, waving, and saying, "ice meet you" as he stretched out his palms to shake hands and make friends.  He heard a little girl say "hug" to her mom, and he went right over to her to give her a hug.  (I know, at some point he will need stronger "social graces" training, but he's 3 - it was really cute!).  He told Dr. Missy, "no like" while she was trying to brush his teeth, then grabbed the toothbrush and said "me do".  She used a different type of toothpaste than we use at home, and he let us know he knew by saying, "uuuck" and blowing a raspberry.  When we were leaving the office, he bellowed, "byeeeeeee" a bunch of times, waved, and stopped to say "byeeeeee" to some of the people he'd met while in the waiting room.  What a great trip to the dentist!  (Oh, and both the boys' teeth are super clean and healthy!)

2. One afternoon, I was in the kitchen cleaning up, and had a Wow Wow Wubbzy on in the living room for him.  When I went back in to check on him, he had gotten a hold of my cell phone, and was "talking".  I couldn't understand him; I just watched.  I tried to interrupt him a few times, saying things like, "are you on the phone?" or "who are you talking to?".  After 2 or 3 interruptions from Mom, he walked over to the TV, shut it off, said, "SHHHHHH, I'm on phone!" then continued about his conversation!

3. We have been working during mealtime on him asking for more between bites.  He has gotten pretty good at "more" both verbally and with the sign.  I have tried in the past to prompt him to say, "more please" or "more eat" or "eat please", but often he only responds to whatever the last word of the prompt is.  This week, he started saying "more eat please" on about 50% of the occasions I prompted him, and "more please" on about 30% of the prompts.  He is switching between signs and verbal response with the "eat" and "more" responses, but he always says and signs "please".  It sounds like "peeeees" and it's so cute!

4. We have been potty training Sylas when he allows for us to (sometimes he takes his pull-up off and pees wherever he is sitting/standing at the time, sometimes he pees then takes his pull-up off).  Yesterday morning, he took his pull up off and peed all over the living room floor (luckily it's not carpeted), and after I made him clean it up with me, we talked about how you're supposed to go pee on the potty and not on the floor.  As usual, I couldn't tell for 100% sure if it sunk in or not, but when we got home from preschool that afternoon, I asked him if he wanted to go pee on the potty, and he said, "yesssssssss", then grabbed my hand, led me upstairs to the potty, got his potty seat, put it on, flushed the toilet (I know, the order is off, but whatever, it was so cute!), then pulled down his pants and said, "uuuh" and put his hands up.  I put him on the potty and he smiled, leaned forward, looked up at me and said, "sssssssssssssssss".  He didn't pee, but he knows!  2 hours later, he said to me, "I poop".  Sure enough, he'd pooped in his pull-up! 

5. There is a metal air duct return on the floor in our dining room that is big enough for Sylas to get into and actually sit down.  We went through about 6 months of trying to train him out of pulling the cover off the vent before we moved one of the couches on top of it.  Little did we know that idea would slowly ruin our HV/AC unit over the course of a year and a half due to restricted air flow, so we had to move the couch back off it.  In the past 2 weeks or so, Sy has rediscovered his old passion for this little vent cover.  He has been getting Super Nanny time outs for over a year now and is just starting to sit independently on the step for 1 minute without me having to "block him in", so we've done about 10 time outs this week - every time I hear that grate move or see him trying to move it.  Each time, I tell him, "not for Sylas; not for play" and tell him, "say sorry", to which he always says, "sorry".  And I'll admit, for the past 2 years, 90% of the time he had time outs, I wondered if he "got it"... like whether he knew he was doing a time out and saying he's sorry to his brother because he pulled his hair, you know?  Last night, I was cooking dinner, and I heard that grate move.  I walked into the dining room and there was little Sylo... RUNNING full speed ahead from the grate to the couch in the living room.  I climbed over the gate between the dining room and kitchen and went toward him, and as I was starting my spiel, Sylas said, "aw we" (sorry) then sat on the couch.  I took his hand and led him back to the grate, and as we were walking there, he said, "no way" and did the sign for play.  EUREKA!!!!  HE GETS IT!!!!!!!!  Of course, the grate was an issue a few more times last night, and the reminding and redirecting seems like it will never end, but HE GETS IT!!!  I'm a proud Mom!

There are so many days; weeks even; that go by when I wonder if he understands what I'm saying to him or asking of him, and then some days it's crystal clear.

MCDSIG's New Website

If you know someone with Down syndrome, this is the site for you!  Newly launched, the Montgomery County Down Syndrome Interest Group's website is filled with articles, advice, information, stories and photos sure to warm your heart.  Go check it out!

http://www.mcdsig.org/

WHAT THE #?*%@! DID SHE SAY?

Once a year, I get a few days by myself to go visit my sister Sherry in Las Vegas.  We also have a home there that we rent out, so I check on it, but the main reason I have gone the past few years is due to the Academy of Country Music Awards being hosted in Vegas.  There are 2 nights of free concerts as well as the ACM "Fan Jam" that runs simultaneously with the ACM Awards.  Friday and Saturday night were madhouses... tens of thousands of people packed Fremont Street to see such acts as Hunter Hayes, Scotty McCreery, Jana Kramer, Luke Bryan, Eli Young Band and Eric Church.  In my opinion this year's headliners (Church and Bryan) were way too big for Fremont Street's britches.  There were way too many people, and I am a tiny little woman (only 4'10"), but I came out unscathed when battling the masses.

Battling the winds on Sunday?  That was another story.  When we checked into our hotel, we met a woman with the coolest manicure I'd ever seen, so I asked her to get us in touch with her nail lady.  She did, and on Sunday, we left the "nice part of town" and headed to get a manicure.  While we were sitting in the car waiting for the nail lady to arrive, I'd had my car door open.  Sherry suggested this was not the best part of town to have the doors unlocked, let alone open, so she suggested I shut my door.  Then WHAM!  I shut it alright... on my toe!!!!!!!!  YOWZA did that hurt!  I barely pulled on the door... the 60+ MPH winds simply helped the door shut faster... and harder... on my toe!

So we proceed to get our nails done, and in the course of that hour, my entire leg goes numb up to the knee.  I figure I should go get it checked out, but our hospital copay is something ridiculous, like $500 or $1000, so we drive to and from urgent care places until we find one that accepts my insurance.  As I'm checking in with this nice young lady, I mention that I like her glasses.

"Thanks", she says.  "They were $9 at Walmart".

"Wow, that's cheap, I never find frames I like that cheap.  I can't believe you got them at Walmart!".  I continued, "Plus, I have such a small face, I usually have to buy kids glasses".

"Yeah, my sister has a really tiny face too", she replied.  "Once she got a pair of glasses that were way too small for her face.  She called them her 'Down syndrome glasses'".

HER WHAT????  SHE CALLED THEM HER WHAT!!!!!!!

In my mind I'm ready to kick butt, but then I remember my foot is so sore I couldn't kick anything if I wanted to.  So I responded simply by saying, "Oh, funny you should say that, I have a child with Down synndrome".

SILENCE.

Not another word was said to me by this woman unless it was medically related.

I spent the next few hours in the waiting room trying to think of anything other than what this girl said to me and how to handle it.  Luckily, my toe was throbbing.  And there was a show about Candy Montgomery, the woman who chopped up another lady in Wiley, TX, about 30 years ago.  It intrigued me very much so because my husband grew up in a neighboring town to Wiley, TX.

Anyway, how do you handle a comment like that? 

By the time I got to see the doctor, I had calmed down.  I was so sick of sitting in that urgent care, I was in pain and I was missing the ACM's and the Fan Jam.  Before the doctor left the room for the final time, I let him know what she said to me and that I had a child with Down syndrome, and how I felt the comment was inappropriate in any context, but especially so in a medical environment.  I was hoping he would have a conversation with her about her language but that I thought she was really nice and ought not be "punished" for her phrasing.  She was young enough that I really thought she would take constructive criticism well, but she also was very spunky, so I was afraid any punishment would just piss her off.

I feel I handled this situation to the best of my ability.  How would you handle it?

The rest of my vacation was relaxing, mostly because I couldn't walk... I spent more time in front of the slot machines with a beer in my hand and sitting at the sushi bar than I thought I would, but I came home having spent $100 for the entire 5 days.  I'm not complaining about that!