Registration is open - IEP Clinic on 9/29/12 at St Christopher's Children's Hospital!

Saturday, September 29, 2012
10:00AM – 2:00PM
St. Christopher’s Children’s Hospital
3601 A St. Philadelphia, PA
Absolutely FREE!!!
Open to families from all districts
Sponsored by Pennsylvania’s Education for All Coalition, Inc. and Latino Services of Vision for EQuality 

Topics Include:
Inclusion * Goal Writing Secondary Transition Extended School Year Specially Designed Instruction Assistive Technology Positive Behavior Supports Special Ed Law * Others!

Spanish speaking experts are available!
Free on-site childcare available! (Please register for this service in advance.)
Please let us know in advance if you require specific accommodations in order to participate!

 Work with experts on your child’s IEP.
    Schedule a 45-minute session with two expert consultants to improve your child’s IEP.
    Go home with IEP tips and a list of next steps.
    Enjoy networking tables, free resources and light refreshments.

Registration Opens August 27th ~By Appointment Only~

Schedule your appointment by contacting Jennifer Schrad at jschrad@paedforall.org or (267) 232-0570. Para Español, contacte a Ana Pacheco al 267-773- 5296 o apacheco@visionforequality.org. Include your name and contact information. Please allow a few days for a return call. Students are encouraged to attend!

*This workshop is supported by a grant from the PA Development Disabilities Council

Looking for a hair stylist for Sy - he HATES haircuts! Suggestions, please!

We just took Sylas for a haircut, and, again, it seemed like he was in agony the entire time.  I realize he is sensitive to having his hair touched, which we work on a LOT at home.  (He loves to touch everyone else's hair, go figure!)  He also hates, we assume from research, the sound of the scissors clipping his hair.  Taking him to a random walk-in place like Hair Cuttery or something is 99% miss and 1% hit - he's had one person once cut his hair without a full-on tantrum/screaming fit.  Many times, the stylists just get so annoyed/flustered and he ends up with yet another bad haircut.  If you know of a person who has experience cutting the hair of kids with sensitivity to haircuts, please comment below or send me an email at sylasspeaks@gmail.com.  I will travel anywhere in Montgomery, Chester, Delaware, Bucks counties.

Thanks, and happy Sunday!

Sylas Tells a Story

I didn't realize it until about 3 minutes in but Sylas is telling the same story over and over in these 4 video clips, all taken at one time, just broken up into shorter clips.  He is talking about the Yo Gabba Gabba dances he does with his mom.  It's so awesome to see the sequencing in his expression, even if we can't yet make out all the words.  Give your little ones time and they will get there!

Cover Model with Down syndrome - "publicity stunt"?

Please take a moment to read this article...

"Valentina Guerrero, 10-Month-Old With Down Syndrome, Will Be The Face Of Dolores Cortés' Kids Swimwear Line"

http://www.huffingtonpost.com/2012/07/24/valentina-guerrero-10-mon_n_1698215.html?utm_hp_ref=fb&src=sp&comm_ref=false

How do you feel about this?  Is it a "publicity stunt" to have a model with Down syndrome be the face of a fashion line?   I for one, think it's AMAZING!  This little girl is BEAUTIFUL!  Let her shine as the face of this swimwear, Down syndrome or no Down syndrome. 

Sy's Famous

I feel like a truck ran me over (flu? sinus infection? too soon to tell) and have a little stomach bug...  this morning I thought this day was going to be "one of those days".  Sylas looks like a truck ran him over - he busted his nose on the 3rd step of preschool on our way out this afternoon.  I took him back inside to clean him up.  Zeke sighed, bored, again.

I felt at that point that the day was just going to continue downhill until it was time for bed.  Then, as I sat talking to the director, Miss Stephanie, she started telling me about a new baby starting at the Goddard School.  She said Sylas got to see the new baby (he LOVES babies) today.  Then she mentioned the baby has Down syndrome.  Then Miss Stephanie told me when the mother of this baby saw Sylas today, she said, "Is that Sylas?!  I know him!  I've read his mom's articles and blog."

HE'S FAMOUS!  SY'S FAMOUS!!!  Totally made my day.  To that mom out there who's child is starting at Goddard... please leave a comment or email me!  I would love to talk with you and meet your baby!

HAPPY SCARY 4TH BIRTHDAY, SYLAS!

Seizures, accidents, headaches, oh my! 

I've been promising to post - so here it is!  Leave me a comment if you've ever had days like this!

In the 90+ degree heat we've had for the past few weeks, I've been praying for rain.  God must've been listening.

Sylas's 4th birthday was last Friday (July 6th), and I had planned on writing a post about the amazing journey we've gone through with him since his birth - recalling the emotion, uncertainty and panic of that day, and relishing in his triumphs thus far.  I wanted to record just how much fun his birthday party was for posterity (and for all my faithful readers).  However the past few days were anything but what was planned.

My sister (who was visiting to help with the kids during my recovery from the neck surgery I had 2 weeks ago) and I pretty much mastered a homemade chocolate chip cookie cake recipe that we were going to turn into a Wow Wow Wubbzy cake for his party that night.  Sylas loves Wow Wow Wubb Wubb.  Even though I wasn't feeling too great because I gotten a headache for the first time in a long time, I was planning for family and a few close friends to gather and have cake and ice cream. Messy house or not, there was going to be a party!

Or so I thought.  What started out as a normal Thursday turned into a 7 day whirlwind of UGH!

When I picked Sylas up from preschool on Thursday, they told me that he had a 100.5 degree fever and was pulling at his ears, and that in order to return to school Friday (his birthday), he would need a doctor's note.  I thought, "great, he's not going to be able to share his special day with his friends if we don't get him to the doctor's today, but I feel like crap - I guess I can rest another time".  It seems to me that moms always have to "rest another time".  My older son, Zeke, was in the ER until 11:30 pm on the 3rd (Tuesday night) for a gash on his foot and needed to stay home from camp for the rest of the week, and my kitchen was hit by a tornado of last-minute home renovations on the 4th of July.  The house, like my body and mind, was now in disarray.

By the way, the gash on Zeke's foot - I was sitting outside having a glass of wine with my sister when the neighbors started setting off some little fireworks, so my husband called Zeke to hurry outside and see because he loves fireworks and like his mom, he gets all excited to see them... of course "hurry" meant, "no time to put your shoes on like you're reminded to every time you go outside"... and in his haste, Zeke kicked my wine glass over then proceeded to slip on the glass as he put his foot down. I was reminded of 2 lessons through Zeke's ER trip - no glass on the porch and no more kids without shoes outside!

So back to the eve of Sy's birthday... I made him a 2:45 doctor's appointment simply because I knew I needed a doctor's note to get him back into school the next day so I could get some rest before cleaning up for the party.  I knew I was going to be up late baking cupcakes for his school and for his party.  I thought he was fine, just probably overheated from all the playground activity in this wretched heat we've been having. 

I walked Sylas into the house from preschool, let go of his hand, and felt a bug on my sleeve, and since I utterly abhor the feeling of bugs on me, I swatted my shirt and off I went into the kitchen to set my purse down.  By the time I got through the doorway to the kitchen, I figured out what had been on me by the huge sting and sheer pain I felt under my arm - a BEE - yep, allergic me had been stung.  3 doses of Benadryl and an ice pack and I was down for the count.

Mike had to come home from work early to take Sylas to the doctor instead of working on the kitchen, like he'd planned.  And believe me, the kitchen needed to be worked on!  It started out that he and my sister were going to replace the crown molding that has been mis-matched since I bought the house, and turned into painting the ceiling and the room and possibly getting a new floor aswell.  I thought the kitchen would be done by the party on Friday, but it was looking grimmer by the minute.  And in the midst of all this, I completely forgot about the appointment I made to pick up Sy's Sure Step shoes!  The reminder went off on my phone and it was immediately lost in the void.

Mike took Sy to the doctor and when they returned, I wasn't at all surprised to learn he had no fever, his ears, nose and throat all checked out and he was "just fine".  I was surprised however to see him acting a little unlike himself that night.  For someone who hates to sleep, he zonked out on the couch at 6pm without wanting dinner (and he loves to eat).

Meanwhile, Mike ran to the store to pick up a few things and got into a fender-bender.  Poor back end of our brand new car, but at least he wasn't hurt, nor was the other driver.

That night, I kept Sylas in the living room to sleep because sometimes when we move him once he's fallen asleep, he wakes up and is super-grumpy.  And oh, did I mention our central air is broken, it's been around 95 degrees all week and as the only A/C we have is in the living/dining room!  Sy's room is really hot at night.  I fell asleep on the other couch and woke up to Sylas crying around 1:30 am.  He was shivering and shaking and crying, bawled up in the fetal position, twitching his little body.

I woke Mike up and he picked Sylas up and held him while I got his temp (99.5) and gave him some Motrin.  After about 20 minutes, the shaking stopped and the poor little guy fell back to sleep on Daddy's chest.

Sy woke up Friday morning in an okay mood, but he was still a little warm so I decided to give him more Motrin and keep him home from school.  I guess the doctor's note was moot at this point and it's not like I'd had time or energy to make his cupcakes for his class anyway.  He didn't have much of an appetite and wouldn't take more than a sip or 2 of any liquid at a time.  I'm sure he would've sucked up countless glasses of chocolate milk, but I wanted to stay away from that with all this heat we've been having.  He had spurts of energy where he played and laughed with Zeke and had a great time.  Any doctor would've taken one look at him while playing and said what my dad used to say to me when I would feign ill to get out of going to school - "you don't look sick!"

I spent some time playing with my two boys, then finally got around to making coffee (at 12:30 pm).  And, as is par for the course in the Fleming household, someone started crying... Sylas.  He was on the couch bawled up in the fetal position again, shaking.  I checked his temperature (99.8) and tried to get him to calm down, which didn't work.

When I called his doctor to try to get him in for another appointment, the nurse regrettably informed me that they were double-booked for the day and wouldn't be able to see him until Monday.  WHAT??  Are you kidding me?  What happened to, "stay open until you see all the kids that need to be seen when they're friggin' sick!"  I told the nurse his symptoms and that the shaking lasted about 20 minutes (I'm assuming because the Motrin kicked back in).  She said it sounded like the shaking was due to fever and that since the Motrin was working, she believed he would be okay.  She advised me to take him to the ER if I felt it was necessary or if the shaking didn't stop after 30 minutes, but I was afraid by the time I got him there, the shaking would've stopped and they'd send me home as if everything was "fine", because he was "fine" the night before.  Plus, Zeke was just there 3 days ago and I was only 2 weeks out of having surgery, so I didn't know whether to compromise myself or Zeke when the shaking stopped the first time with Motrin.

Note to self - get a new pediatrician.

Then I started thinking about seizures and kids with Down syndrome being prone to seizures.  Then I panicked.  I decided to have Zeke video Sylas shaking and take pictures of his poor purple arms and legs as he was shaking.  I figured I could take the videos with me to the ER if I needed to go.  I consulted with my friend Tricia who is a nurse at CHOP (and my go-to medical expert) - she said they were likely febrile seizures due to fever, just as the nurse at my doctor's said.  Mind you this was all in a 15-minutes period.

Sy did stop shaking again after 20 minutes or so.  Tricia said if it happened again, take him to the ER, but that he would likely be fine.  I held him and rocked him until he fell asleep.  Then I got to make my coffee.  At 2:00 pm.  I think I might've eaten something, but honestly, I just don't remember.

I decided to upload the videos and pictures Zeke and post them to Facebook, where I have a lot of contacts/friends who have children with Down syndrome.  I know some people may be against such personal things being posted on social media sites, but I find that my "mommy friends" (and "daddy friends") and I have a mutually helpful and caring network where we can go for advice at any time.  (I'm thankful for you all!)  As the comments started coming in, I started getting even more upset and concerned about "seizure" seizures.  But then my wonderful friend Jen got me in touch with her friend Amy who, like Jen and I, has a child with Down syndrome who has had progressively worsening seizures all her life.  She friended me, watched the videos, then called me to reassure me that they were nothing like what her daughter has gone through.  (Thank you, Amy, for taking the time to talk to me).

Here are some videos of what febrile seizures looked like for him (note his "coloring" during the seizures - purple).  Keep in mind the cinematography is that of a 6-year old because I was holding Sylas, so you have to look closely at the corners of the screen to see his arms and torso.

If it breaks your heart to hear kids cry like it breaks mine, I would put your speaker on mute.

Fast forward to 6:00 pm that day (the 6th)... Daddy walks in the door from work to find me holding Sylas at the start of yet another seizure.  We decide to take him to Bryn Mawr Hospital since they have a Pediatric ER.  But on the way there, we realize the seizure will be over before we get there, and I follow my neighbor's advice - take him to the closest ER so they can see the seizure, and if they need to admit him, they will transfer him to a children's hospital.  So we took him to Mercy Suburban.

After 4 hours, Sy's temperature went down from 103.9 to 102 degrees and he'd taken some fluids.  But though his ears were red, there was no infection present.  The doctor explained, "his ears are red from the fever and crying".  His nose and throat also checked out "just fine".  We took him home, and over the weekend he continued to have a high fever, tug on his ears, have febrile seizures and turn purple about 5 1/2 hours after each Motrin dose.  He didn't eat much or drink much, so we had to force the liquids on him.  Funny kid though - he did manage to scarf up a few of the mini-chocolate cupcakes his Grandma brought him from Wegman's.  Meanwhile, I was still having headaches and not sleeping.

Let me pause for a moment to say this... every single person with whom we had contact at Mercy Suburban Hospital was extremely nice, knowledgeable and caring.  This included the intake person, 3 nurses, 1 doctor and a wonderful woman whose job it was to visit everyone and make sure they had everything they needed.  Whether the diagnosis was correct or not, the explanations given were very intelligently made and I would strongly recommend the hospital to others.  Especially over Montgomery, which is where Zeke got to see a guy in handcuffs in the waiting room when he went to get his foot looked at.

On Monday, after a long weekend of seizures, fever and keeping the oddest hours, we got Sylas back to the doctors - finally his ears were labeled "infected" and he was given antibiotics.  He was pulling on his ears Thursday and his preschool teacher saw it plain as day - ear infection - why it took 2 doctor visits and a trip to the ER to get him some medicine is beyond me.  Two doses of antibiotics later, Sylas had little fever and was done with the seizures.  By Tuesday afternoon, he was back to his old self. 

Okay, kid crisis mode over, time for me to get back to healing myself after surgery, to rest, and to figure out why I've been having headaches nonstop for over a week.  I call the ENT who did my surgery and was told that the headaches could be a result of healing and doing too much (no duh) but that they're not a result of the surgery or a complication thereof.  Whew.  But man when will they stop?!  Friday night, I had a 10-second pain run through my head that made me want to explode.  I've never felt anything like that in my life, and it made me feel for people with migraines.  I had a few more throughout the weekend and this week, but Tuesday I'd had 4.  It's been hard to sleep - it's so uncomfortable to have a headache and a healing neck and try to lay down at the same time!

Anyway, we sent Sylas back to school yesterday morning and Zeke had started back to camp on Monday after having a few days off to let his foot heal.  Finally some time for mom to rest.  Oh wait, nope, not going to happen.  I had a downstairs filled with sawdust, nails, pieces of the old trim, tools, etc all over the kitchen.  Not to mention I don't think a dish had been washed in days.  I spent the 3 hours Sy was at school cleaning up, which takes me forever right now because I still can't move my neck much or lift anything, and it throbs and throbs if I let my neck go lower than my heart (like when bending over).  I figured it would be easy to get some rest when Sy got home from preschool because, "of course he's going to nap... he's still recovering and I'm sure preschool will have worn him out".  I thought we would be able to take a nap before picking Zeke up from his field trip to Mermaid Lake.  But alas, Sy fell asleep in the car on the way home from our quick trip to the store to get pull-ups, and that's the only nap he needed - he was bouncing off the walls from 1:00-2:15, when he fell back to sleep - conveniently the exact time I had to pick up Zeke.  Thanks to my neighbor for watching him while I got Zeke.

And a big GRRRRRR to the camp counselor watching Zeke, the spitting image of his fair-skinned dad, at a pool for 4 hours without putting more sunblock on him!  He got into the car crying in pain because his body hurt.  He looked like he had a pink t-shirt on underneath his camp shirt.  Poor sunburned kid - not fun!  He was in a lot of pain last night, and it was Tylenol and aloe vera to the rescue.  My husband didn't get home from work until about 7:30, when I pretty much said, "g'night, I'm going to watch tv in the den and fall asleep".  Luckily for me, he obliged and I was able to doze on and off between Zeke's crying last night.  I kept him home from camp today and put aloe on him every 30 minutes it seemed.  We had a lovely 2 hour Play-Doh session, and it was a much-needed break from healing, headaches, cleaning, crying, shaking, medicine dosing and home improvement.

(Some of our Play-Doh creations - a drink with a sippy straw, chocolate chip cookie, apple, strawberry. cherries, marshmallow, pretzel and a mozzarella and tomato on rye.)






Sylas did have a 4th birthday celebration at preschool - today.  Here is a picture of him dancing with his friends!

I would like to say a big THANK YOU to all my friends and family members who helped, advised me about and prayed for Sylas last week.


Dare I pray for some smooth sailing?  Some time to rest and heal?  To get rid of these headaches?  Nah, I'm a mom... I'll get to that later.

It was a scary week, but the worst is over.  I hope.

HAPPY 4TH BIRTHDAY, SYLAS!!!!!!

IEP Clinic to be held at St. Christopher's Children's Hospital - Registration Opening Soon!!!!

PEAC (Pennsylvania's Education for All Coalition) and the Latino Services of Vision for Equality are hosting an IEP Clinic on Saturday, September 29, 2012 from 10:00AM until 2:00PM at St. Christopher’s Children’s Hospital.  This clinic is FREE & open to all districts!  This is a great opportunity to work with experts on your child’s IEP.

Registration will open soon.

Here is a link to the flyer...
http://www.paedforall.org/images/IEPClinic/philadelphia_iep_clinic_save_the_date.pdf

You can also visit PEAC's website at www.paedforall.org for more information.

PS, I will be one of the consultants at the clinic - come on out and meet me!

PLEASE VOTE AND SHARE... for an article for SpecialNeeds.com...

I found this on a message board I'm subscribed to... please read and pass along!

Hi! I'm writing an article for SpecialNeeds.com about reasons someone who is given a prenatal diagnosis should keep the baby. I wanted to add a statistic about how many families who already have a child with Down syndrome (whether born to you or adopted) would go on to adopt another if finances weren't an issue. If you have a minute, will you go over to my blog and answer the poll? It's in the very upper right hand corner of my blog. If you would share it with other DS communities your a part of, that would help me SOOOO much, too.
I want this to be representative of the Down syndrome world, not just those who WOULD adopt. So even if you would not do it again for ANY reason, please vote.

Thanks for your help in advance!




This is the blog link:

http://www.mostlytruestuff.com/2012/07/poll.html

SYLAS'S FIRST AHA! MOMENT!!!!!!!!

(From June 24th)

The 9pm hour today was quite possibly the best 9pm hour I've ever had in my entire life, for I saw my son have his first "AHA! moment" - an Oprah-worthy moment, for sure.

For those of you who don't know, on Monday, I had surgery to remove a large cyst from my neck (almost 4" in size, but not cancerous, praise God).  I haven't had much more than a moment's rest even though I'm supposed to, and I missed a pain medicine dose once yesterday and once today, so I'm not in the best of shape.  I spent a few hours this evening resting and watching TV, which is a good thing, because little did I know, I'd be overdoing it tonight.

I am very lucky to have had the help of my sister, who generously donated a month of her time to come here and stay with us.  She does not have children of her own, so when she showed up here last week, she had stars in her eyes about what she was going to be able to "accomplish" with the kids during her stay.  Within the first 2 days after my surgery she was as stressed as I sometimes get!  However, she has let Sylas eat 100% on his own, no matter the mess, and she has been determined to get him potty trained.  This week he has gone about 4 times out of 20 or so tries.  We really have been trying to get him on the pot as much as possible.  A few times he has led US there and tried to go, but mostly it's us taking him.

Tonight, around 9, we took him on his last trip to the potty before bed.  He started his routine - lift up the toilet seat, put the potty seat on, flush the toilet (though we're trying to get him out of that habit, he LOVES to flush before he sits down) and pull down his pants, then my sister lifted him onto the potty.  Instantly, he peed just a tiny bit, whereas usually he sits for a good 10 minutes or more before he goes.  When we clapped and shouted "yay!", he looked up at us and with a tilt of the head, his eyes lit up.  He looked down fervently and motionless, and about 4 seconds later, more pee!  We clapped and shouted and he said, "yay!".  Then he looked down again, concentrated, and again, more pee!  We clapped and shouted and he said, "yay!".  This went on about 10 times, and all the while you could pride fill his entire body... he sat straight up, stuck out his chest and grinned from ear to ear.  He clapped and "yayed" like it was going out of style.  He got it.  He finally got it.  He finally made the connection between the toilet and what he is supposed to do there, as well as how he can get his body to do it. 

I am so proud of Sylas tonight!

It's Over and I'm Okay!

On Monday, I underwent surgery to remove cyst from my neck - it was 2" by almost 4" and is called a "Thyroglossal Duct Cyst".  It was NOT cancerous, thank you Jesus!  I will be back up and running with SYLAS SPEAKS hopefully within a week or 2, once I can type more than a sentence without my neck hurting.  Just wanted to update everyone.  Thanks for all the thoughts and prayers!

Also, here's a really cool article I found about people with Down syndrome... it's not written in my taste, but it's for sure the truth!  Enjoy!

http://www.xojane.com/family-drama/down-syndrome-with-alzheimers?utm_medium=facebook

3rd Annual Summer Institute - presented by Temple University's Institute on Disabilities

3rd Annual Summer Institute

Beyond Inclusion—Improving Outcomes for Students with Disabilities

Tools and Strategies for Including Diverse Learners

Presented by the Institute on Disabilities at Temple University in collaboration with Temple University’s College of Education.

For professionals, administrators and teachers in Philadelphia schools and surrounding areas, school community members and parents.

Welcoming experts in the field

to present their perspective on this year’s focus—

Positive Behavioral Supports

 July 10,11, & 12, 2012 

Temple University Main Campus Philadelphia, PA

Registration Fee: $395 per person*

(To register for only one day: $195 per person)

*For parents or persons with disabilities (who are not education professionals), a limited number of scholarships may be available upon request.

NOW OFFERED AS A 3-CREDIT COURSE!

Special REDUCED fee of $325 if you:

1. Submit registration and payment before JUNE 6, 2012  NOW EXTENDED!!

OR

   2. Register and submit payment as a TEAM member (three or more from your school or agency)

ACT 48 CREDITS AVAILABLE

Registration deadline: June 22, 2012* 

*Deadline for registration with accommodations is June 18

 Register online now!

   http://disabilities.temple.edu/programs/bi/bi2012.shtml    

Tuesday, July 10

Filmmaker Dan Habib

screens his new film "Who Cares About Kelsey?" and

hosts a stimulating discussion on inclusion for students with emotional/behavioral challenges.

Wednesday, July 11

Matthew Tincani, PhD,

Associate Professor of Special Education, Temple University,

will present an overview of positive behavior support as a model for preventing challenging behavior across home, school, and community environments.

PLUS

Jodi Manning, Parent Training Project Coordinator, National Bullying Prevention Center will present on bullying awareness and prevention of bullying for students with disabilities.

Thursday, July 12

 Carrie Leonhart,

Augmentative Communication Services Coordinator at the Institute on Disabilities at Temple University

will discuss how parents and teachers can support communication.

PLUS

Family Member Panel Discussion

where students with disabilities and their family members discuss the effects of Positive Behavioral Supports.

____________________________________________

 Register online now!

  http://disabilities.temple.edu/programs/bi/bi2012.shtml

For more information, contact Julie Kessler, PhD

TEL: 215-204-1977 or EMAIL: jkessler@temple.edu

A program of the

Institute on Disabilities at Temple University, College of Education

www.disabilities.temple.edu

Fantastic Article: "What It's Like to Have Autism"

http://www.webmd.com/brain/features/understanding-autism-symptoms

Nanny Nanny Boo Boo!

Sylas Sings and Dances

Here Sylas is imitating a Yo Gabba Gabba dancy dance - this is the first time I've ever seen him follow directions from someone on TV.  I'm so proud!

Here is Sylas singing along with "Red Solo Cup" by Toby Keith... he only says a few of the words, but his timing is dead on, and I didn't even know he paid attention when I listened to music in the car!!!

I AM NOT SCARED!

I am not scared.  I am not scared.  I am not scared.

I figure if I keep saying this out loud, in text, under my breath, to God, whatever, that I will somehow magically NOT be scared anymore.  But unfortunately, I know I'm still going to be scared.  It's a NEEDLE.  No wait, it's TWO NEEDLES.  In my neck.  S C A R Y ! ! ! !

The short version of this story is that back in late March, I was really really sick with some flu or strep or something of that nature, and I remember finding a small lump on my neck while I was out visiting my sister in Vegas the first week of April.  I remember thinking it was a swollen gland and that it would go away.  But it didn't.  So I went to my doctor about 4 weeks ago, and he thought it might be a branchial cleft cyst, which, according to Wikipedia is, "an oval, moderately movable cystic mass that develops under the skin in the neck between the sternocleidomastoid muscle and the pharynx."  Not a big deal.  He suggested I have a CT scan done to confirm, which I did.  I found out last week that the mass is NOT a branchial cleft cyst, nor is it a swollen gland or lymph node, but it is a mass the size of a golf ball attached to my thyroid.  So I am going in for a biopsy tomorrow morning... hence my TWO NEEDLE PHOBIA!  One to numb my neck and one to extract cells from this mass.  I'm only just a little scared.  Actually to be honest, I'm more scared of the needles at this point than this thing actually being cancerous.  Either way, it has to come out, and either way I can live without a thyroid.  Let's just keep our fingers crossed that it's not cancerous, and if it is, that it's only in the thyroid... because there has been a lot of cancer in my family, and I'm not about to be a casualty!

Wish me luck!

PS, The boys are doing very well and I am happy to report that the pink eye and strep that have also paralyzed the Fleming household this month have *almost* left the building.

PSS, here is a drawing for Sylas that Zeke and I worked on while we were all sick, and one Zeke made of his own...

DON'T STOP!

Thank you to all of you who have taken an interest in following my blog and my journey with Sylas.  I just wanted to give you all a quick update - I've had a pretty serious health issue come up in the past 2 weeks, and as a result of going to a few hospitals and doctor's offices, I now have a horrible nasty strep and pink eye in both eyes, so I haven't been able to sit long enough at the computer to write anything for a couple of days, but believe me, I'll be back!  Please check back in about a week... don't forget about us and don't stop reading!

HAVE A GREAT DAY!!!!

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! 

THANK YOU TO MY SISTER FOR NAMING MY BLOG!!!

When I received the offer from The Times Herald to have my blog added to their website, I was over the moon!  My sister, Rebecca, happened to call me a few hours after I'd gotten the news, and when I told her, she told me that she'd had a little gift for me... read the email she sent me and you'll see why...

Sis -

Don't feel any pressure to use these for the blog for this reason or even this time around.  I have been holding onto them for something special for Sylas.  As I mentioned, one day I was singing this song I was writing about Sylas - about the pure joyful tears that fill my entire heart and force a huge smile on my face when he whispered in my ear.  It always feels like he is telling me a very special secret that he wants to share with me and only me.

When Sylas began to speak it was such a special gift and I felt honored as his aunt to be here for this time in his life (though I wish I could be there more)... There aren't words to describe the pureness that comes accross in his voice -- it's like you hear his smile...... Only Sylas whispering in your ear (or yelling in it) can make a person feel this way ....there aren't words so I just wrote and sang...... "When Sylas Speaks".

When you were writing your blurb for the magazine article I wanted to get you an avenue for you to speak for Sylas publicly and remembered the song.  And I wanted to tell you so you could include it in the article but Brett and I discussed it and prayed and it wasn't time yet... I can see why now.  This is much better time for you to have them.  You were very busy with the photos before and wouldn't have had time to prepare content on your schedule.  It would have been forced.  But, I am SO happy for you sis because both Brett and I knew that you would be writing for Sylas and God has confirmed it.

Maybe this avenue will help Sylas Speak to the world for himself one day!

Love ya.

Rebecca



Rebecca gave me SylasSpeaks.com (not running yet, but it will be), the Facebook page "Sylas Speaks" and the Blogger/Gmail account for Sylas Speaks.  It's so fitting for many reasons... because I never shut up, because I love to talk about Sylas, because I am a huge advocate for him and am trying to speak out to educate and help others, and because I hope to instill these values in Sylas so that he can speak for himself one day. 

I wanted to take this opportunity to thank my big sister for this incredible gift.  Sis, this is one of the nicest things, if not the nicest, that anyone has ever done for me, and I thank you from the bottom of my heart.  I love you, and Sylas loves you!

BACKSTORY

Let me get you up to speed... My name is Sue, and I am the mother of 2 wonderful boys... Zeke, who just turned 6 yesterday (he's a St. Patty's Day baby!) and Sylas, who is 3 1/2.  Sylas was born with Down syndrome, so the past few years have been ones of great learning, exploration, stress, struggle and complete and utter love.

We did not know until birth that Sylas would have Down syndrome. I had blood drawn for quad screen, as many women opt to during their pregnancies, but the lab did a triple screen, which does not test for Down syndrome.  I remember what I was wearing and where in the yard I was standing when the doctor told me I had nothing to worry about because theses tests are merely a precaution and "you're still young" (I was 30).  I remember pacing the front lawn calling my husband at work to tell him (well, to SCREAM to him) what had happened and how he agreed with the doctor.  "Don't worry about it", he said.  At the time, I chalked up my outrage and fear to the pregnancy hormones that had taken over my body.  I was over it by the end of the call with my husband, and never thought about it again.  We had several ultrasounds done after that point and there was never a soft marker to be found.  In fact, the words "Down syndrome" did not cross my ears again.  Until the moment Sy was born and a Neonatalogist came to my bedside as I was delivering the placenta; before I even got to hold my son for the first time; to tell me that he thought the baby had Down syndrome

That specialist ruined my first moments with Sylas, but the rest of our lives with him could've been ruined by that silly test all those months prior. In hindsight, I'm forever grateful that we didn't know.  Before he was born, I don't think I would've been strong enough to have had him, but I would have missed out on the best thing that's ever come into to my world.

We were very lucky that Sylas was born without any heart issues, he needed no surgeries, his eyes are fine, his ears are fine, everything major in the health department of babies with Down syndrome was a non-issue for Sylas.  He did have to wear a helmet due to plagiocephaly (flattening of the head) but that was due to his placement as he was coming out; it had nothing to do with Down syndrome.  He also had one scare during his first winter flu where he was hospitalized overnight because his oxygen levels dropped, but we learned during this scare that his "passages" are narrower than that of people without Down syndrome, so we have some tricks of the trade we now use when he gets sick to keep his passages as clear as possible.

After Sylas was born, we (naturally) went through a period grieving, but I'm not the type of person to wallow, so I went into sponge mode, and absorbed as much information as I could regarding Down syndrome.  I read books, joined the Montgomery County Down Syndrome Interest Group (MCDSIG) and I joined the Down syndrome group on BabyCenter.com and signed up for their daily blog post email (this was and is still an extremely beneficial place for me because there is a myriad of information and people can all feel at liberty to ask whatever question they would like help with or information on).  3 months after he was born, I attended my first Children's Hospital of Philadelphia Buddy Walk at Villanova University.  I also started Sylas in Early Intervention, and his services began at 6 weeks.  Having educated myself was what got me through that first few months.  One word of warning - be wary of any information you find on the internet... check the date of the article and the source.  There is sooooo much misinformation out there!

By the time Sylas left the Early Intervention (EI) program at 3 years old, he'd racked up the following services: 1 hour per week of Physical Therapy (PT), Occupational Therapy (OT), Speech Therapy (ST) and Special Education.  His services now come from the Montgomery County Intermediate Unit (MCIU) and consist of the following: 12 hours of Behavioral Therapy (BT) which provides a behavioral aide at his preschool for 3 hours per day, 1 hour of PT, 1 hour of OT and 2 1/2 hour sessions of PT.  His preschool is 4 hours per day and is paid for by the MCIU.   He was also receiving 2 hours per week of ST from Theraplay and 2 hours per week of Feeding Therapy from an independent therapist, but since starting preschool, he's been sick almost every week, so in lieu of missing a ton of appointments, we stopped those therapies for the winter.  They will resume hopefully in April.  He also had 4 hours of non-educational BT to help him with his behavior at home and in the community but that has ended and we are searching for a new organization to provide him with that therapy.  Sylas is in a typical preschool in the 2-3 year old classroom and is doing great!  He was in the 3-4 classroom, but was developmentally behind his peers, so we moved him to the 2-3 classroom and he's really developing beautifully!

So as you can see, Sylas's development and therapy has been a full-time job for his mom since 6 weeks.  I made the decision early on that come hell or high water I would be home with Sylas until he is school-aged.  I have an education background from Kutztown University, so I figured I would be better than a daycare.  I am very fortunate we could survive on my husband's salary while I stayed home.  It hasn't been easy, but it's been very rewarding!

In 2010, I was given the opportunity to be part of a year-long class called C2P2:EI (Competence and Confidence: Partners in Policymaking for Early Intervention) through the Institute on Disabilities at Temple University.  The class was, 5 full weekends long over the course of about 8 months, and during this time, I was completely immersed in every aspect of disabilities and inclusion.  Since the end of the first weekend back in 2010, I remember wanting to do something; anything; everything, to help somewhere in this field of disabilities.  Since then I have become a Parent Consultant through an organization called Pennsylvania's Education for All Coalition (PEAC), and I also assisted PEAC in organizing and facilitating their First Annual Inclusion Conference last November.  As a Parent Consultant, I have participated in IEP (Individual Education Plan) meetings for others as well as IEP clinics, spoken at universities and had college students come to our home to meet and get to know Sylas through Arcadia University's Family Experiences Project.  This past New Year's Eve, I was contacted by Parenting Special Needs Magazine to write an article about Sylas and how his life has changed the path of mine.  We also made the cover!  Now I am blessed to be starting this new blog so that all of you can learn and benefit from the knowledge I've gained and will continue to acquire, as well as the trials and errors of my daily life with Sylas.

I love you, Sylo!  :)
 

PHOTOS OF SYLAS

I am posting a slew of photos... for many reasons... for those of you who have babies with Down syndrome to see that there is hope and development, to see his progression, to understand by the pictures how much the helmet helped reshape his head, to show that he is a regular kid and does all the things that kids do, and because he's so darn cute!

What Sylas looks like now (well, he's had a haircut... this is from Christmas 2011)

The day we left the hospital

With big brother Zeke

Wearing the onesie with Daddy's company logo on it!

First Halloween

First Christmas

Sylas had to wear a helmet to correct his head, which was flat in the back.  He actually had 2 since he did so well outgrowing his first one!

First haircut.  One thing to note - this is the ONLY haircut he's ever had where he did not scream and wiggle the entire time!

First Birthday

Still one of his favorite ways to sit!

Playing with Zeke.  Notice he's not holding his legs together like Zeke... this is one area we had to work a lot on with him... but he can hold them together now!

The t-shirt for Sy's first Buddy Walk at CHOP.  I am making the same shirt every year with his name and age on the back jersey-style.  When he is 18, I will make him a blanket with each of them!

About to touch a ferret at the zoo... this kid is afraid of nothing (except scissors!)

STUCK!

Sylas and Pop-Pop

Aah, the drooling phase!

19 months - last bottle!

 This kid loves the water!

Rooting through Aunt Sherry's kitchen cabinets just like he does at home.

Sy will do anything to get the remote!

First kiss with my favorite girl in the whole world... Mia

The first time he ever took his shirt off himself!

Yoga for toddlers... he loves Downward Dog!

Pretending he's daddy

Fitting into small spaces is easy for Sylas since he's so nimble!

Just over 2 years old - first night sleeping outside the crib - what a mess!

Sylas is very helpful around the house... he does dishes and loves to "weep" as he calls it!

Signing "Dad"

Signing "Mom"

Riding his new bike for the first time

Having a drink with Pop Pop

"Why can't I play baseball?"

He has a thing for carrying purses... he's shaping up to be quite the gentleman!

Reading his 3rd birthday card

Both my boys with guns... greaaaaaaat...

 

 I asked Sylas to pretend to go night-night... this is what he did!

 

Sylas buried his brother under the laundry basket then crawled up on top of it.  Zeke is such a good sport to let him!

 Making one of his "funny faces" for Mom-Mom Bobbie

 

In Zeke's cubby at his school

 Playing our new drum set - March 2012