Sunday, September 18, 2011


1st home game!

Our family and our BFFs Maureen, Ras, and my honorary nephew Samuel bought season tickets together. We have some pretty darn good seats.

Our friends had weekend guests, so just the guys came along this time.

Thanks to the Christmas in July sale at the bookstore, our family has a ridiculous amount of school apparel. There's nothing like putting on a pair of brand new fuzzy sweat pants and sweat shirt on a chilly fall afternoon.

The store didn't have a cheerleader's uniform in Helena's size, so we improvised. At one end of the field they have a kid's area with bounce houses, a bouncy obstacle course, a coloring booth, and other fun activities.

These kid friendly activities and 3 bags of popcorn kept our crew happy for the entire game. (mostly). I didn't know if we would make it through the whole game and since our team got beat up pretty bad, I'd say that was the highlight of the day.

Mark's bike lock worked well in securing the chariot to the fence. This is a very safe neighborhood, but you have to protect your stuff. This way the girls could ride in style for our 4 block walk home.

We're ready for some football! Are you?

Wednesday, September 14, 2011

Team Sophie

Please join Team Sophie on Sunday, October 2, 2011, at Villanova University Stadium for The Children’s Hospital of Philadelphia 10th Annual Buddy Walk® and Family Fun Day.

In addition to the Walk®, the day will be filled with great activities for the whole family. We would really like to see as many of our friends as possible walk with Team Sophie!

In just nine years, this Buddy Walk® has raised over $1.9 million for the (Down syndrome) Trisomy 21 Program at The Children's Hospital of Philadelphia. By working together we can make this wonderful event even more successful. There are many ways to get involved, even if you can't join us on the walk. For more information including the schedule of events, registration information, and donation instructions, visit our page at:

On behalf of our family and Team Sophie, we thank you for your support!

Other ways to support Team Sophie even if you cannot walk with us include:

  • Buy your Team Sophie merchandise HERE

  • Take the R-Word pledge HERE

  • Make a donation HERE

Tuesday, September 13, 2011


A few years ago when we were still living in the mid-west, a group of families gathered together in a hotel for a weekend of family fun. We were families joined together by the love of our children with Down syndrome who had met on-line and who had become a sort of extended family. At this gathering I met Regan, daughter to Adrienne and sister to Russell. I was struck by her beauty as I watched her lovingly snap photographs of all of our beautiful children. She is a very special young woman and when I look at her, I see Alexander and Helena's future.

Through Regan and other siblings I'm blessed to know, I have come to understand that my kids are lucky to grow up with a sister with an intellectual disability. Lucky? Yes, lucky. For Helena and Alexander, there has been no time without Sophie, without therapies, without Buddy Walks, Special Olympics, doctor appointments, patience, acceptance, and the campaign to educate about the R-word. They know first hand what it means to love someone with differences, though at present they may be too young to comprehend or put this into words.

Thank you Regan. Thank you for sharing your love of your brother in such a beautiful way. You've just uplifted and given hope to more families than you'll ever know.

Please enjoy this video:

Saturday, September 10, 2011

Welcome to the 1st Grade

In the state of Pennsylvania, kindergarten is not mandated. Most school districts offer a half day program. This year Alexander is in the 1st grade which brings with it many changes. Our street is still a mess from the new water main and gas pipes that were installed this summer, but it will be repaved.

My little guy is in school ALL day. No more sleeping in has been a BIG adjustment in his little world. He eats lunch in the cafeteria. He has TWO recesses (his favorite part of school). The students all have their own desks instead of tables like they have in kindergarten.

It was a foggy and soggy first day. We have friends whose kid's schools have been closed due to the severe flooding and power outages that are widespread out here. Trees that are heavy with water have been falling over as the saturated ground can no longer support them. Our basement has been flooded. This is the wettest it has ever been in recorded history and let me tell you, it's a mess.

I had the chance to meet Alexander's teacher and visit his classroom at the open house the night before school started. So far we are thrilled with his teacher. She has her classroom so organized. You can tell that she has spent a lot of time getting it ready. It's full of activities and decorations and positively oozes excitement for learning. I guarantee she spent her own money on some of these supplies.

All of the classrooms have Smart Boards, which I was very impressed by. See the socks hung from the ceiling that will blow when the furnace kicks on? So cute.

Alexander is going to love the 1st grade.

Thursday, September 8, 2011

Preschool Days

My big girl has just begun her 2nd year of preschool, but there have been big changes this year. Last year she attended a classroom classified as reverse mainstream. This means that children who develop more typically are in the same class as children with disabilities. However, the number of children with disabilities and IEPs (individual education plans) are higher than what would be found in a regular community setting. Sophie thrived here.

This year we are in a new school district. Even though we only moved down the road, we crossed the County line. Sophie's old preschool was not an option in our new school district, but besides that, her mama had gone to school (C2P2-EI through Temple University Institute on Disabilities) and had been bitten by the Inclusion bug. This year Sophie is attending a typical neighborhood preschool. Let me explain.

First, let me start with what I believe Inclusion to be. Inclusion means that ALL children have the right to be educated in their neighborhood community school with their peers. This does not mean that children with IEPs and disabilities are dumped in a typical classroom without appropriate services and supports. This does not mean that Sophie will be forced to take Algebra in high school, just to say she's included.

It means that on an Individual basis (as in the individual in IEP) the team will assess Sophie's needs and design a plan with supports to make it possible for Sophie to attend a typical school. Inclusion looks different for every child. For some, it may mean attending art class, lunch, and recess with typically developing peers. For others, it may mean being in the typical class full time. (I hate the word typical, but that's what we've got)

For Sophie, it means that she is in her class 99% of the time. Her speech, occupational, physical therapists and her itinerant teacher (like a developmental therapist) work with her while she is IN class. Her ST participates in story/circle time. Her PT is there when the kids go to the playground, etc. In the natural class environment, her team incorporates extra support. Studies have proven that Inclusion not only works for our kids with disabilities, but the benefits afforded to their typically developing peers are enormous. This is the ideal Inclusionary environment. I'll be the first to say that not all schools are prepared to offer this level of support which may mean that forcing an unsupported version of Inclusion would be harmful to the student.

This year we have chosen to let Sophie ride a bus to school. Believe me, this was a heart wrenching, long drawn-out decision, but the best one for our family. Before putting our daughter on a bus to school, I spoke with the Director of Transportation (I always go to the top) and he designed a bus orientation for her. They already do orientations for kindergartners, but it hadn't occurred to them to do this for preschoolers with IEPs. They were wonderful! I took my 3 kids to the bus garage where we met the Director and Sophie's bus driver Miss Daisy. The kids got to explore the brand new, full sized bus. We fitted Sophie's safety seat to her (a specially designed, brand new piece of equipment that works much better than a car seat and will ONLY be used by Soph). We were sent home with bus safety coloring books and a Pooh Bear bus safety video. Awesome.

Sophie started school last Thursday but the bus wasn't ready until this week, so we drove her for the first 2 days. This gave her siblings a chance to tour her school on her 1st day. After the 1st day we received a call from the school district. They wanted to add a Personal Care Assistant (PCA) to Sophie's team. She was escaping class and they were concerned for her safety. (ha!) I had to hold back the laughter. This was exactly what we forewarned them about. I have many friends who have to fight for a PCA. Our school district pleaded with us to allow one. I find that hilarious and ironic in a dark and messed up way that only other special needs parents can truly understand.

Of course I met with Sophie's new PCA, who is fabulous. Her job is to keep an eye out for Sophie but not interfere with her play and learning. She also helps with lunch, diapering, and transitions from one activity to the next. She is a Russian angel and we already love her.

The bus has been an experience for all of us. We gave a small token of thanks in the form of flowers and chocolates (believe me bribes are not only the way to go, but they WORK)! On the first day we had thick fog and flooding caused many roads to be closed and traffic to be horrible. The ride that should have taken 20 minutes max was 45 (I know because I went to her school) and Sophie freaked out. Bad. She cried so hard she broke out in petechia (broken blood vessels all over her face and upper torso that only happens at scary doctor's appointments and procedures). Miss Daisy felt so horrible that she demanded a change in the route to the Director, meaning that Sophie would go straight to school versus first picking up another child who attends a different school. Then she went to the toy store and spent her own money on toys for Sophie to have on the bus. She gave me her personal cell number and assurances that she's caring for my baby like she is her own. She tenderly wipes her tears and nose. We love Miss Daisy.

On Sophie's 2nd day on the bus, while I was strapping her in, a very rude and self-important motorist began wailing on her horn as she was not able to pass the bus. We were not taking pictures. We were not dawdling or chatting (we did that on the 1st day). I was simply strapping my daughter in her safety seat. Mark and I approached this woman to explain but she brushed us off with a "I have no time to talk. I have to get to work." After explaining to her that she is a witch with a b as she sped away (not my proudest moment, but I don't take it back) we began scheming plans for how to deal with her in the future. Plans include video taping this unbelievably rude behavior, following her to her work and later emailing her boss the video, sending it to the local tv stations, and uploading it to youtube. My friends on fb offered to form a posse. We could have signs and pass out "jerk awards" or slap "jerk award" stickers on the bumpers of anyone else who dares to act this way.

In any case, we are pleased with Sophie's preschool despite being very close to going to Due Process until we agreed on her placement. I know that what you really want are pictures, so here you go. I couldn't include our videos as they showed the bus #s and school district. Friend me on fb if you would like to see them. If the slide show isn't below, hit refresh or click the link HERE.

embedded video below