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!  :)