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!