Happy Birthday Helena

tenacious, creative, beautiful, sneaky, loud, funny, curious, playful, loving

Happy Birthday Schmoogie! We love you.

Scootin

With my new job in the city, I commute to work by train a couple of times a week. We live very close to the station, yet not quite close enough for me to walk, given my time constraints. I also have to lug my work with me, which makes riding my bicycle impossible as my bag is too heavy. I'm usually gone in the morning before most of the family is up. We had been making due with parking the car at the station, but this left Mark or the sitter with no vehicle for the whole day. On the mornings when I tried to get a ride, the kids were cranky about getting up early or I would go in later. We need a second mode of transportation and today we got one.

We had been researching scooters as an option for a couple of months. As we chose a Buddy with 125 cc's, we need a motorcycle permit (it has some giddy-up). Mark and I passed our tests on Friday at the DOT.

We will need to get a full motorcycle license before we can carry passengers and with our permits we are restricted to riding from sunrise to sunset. PA offers fantastic motorcycle courses for free and when you pass you get your license. I hope to take a class this summer.

The kids and I followed behind Mark on our trip back from the big city and we all made it back to the burbs safely.

Alexander joined in the fun by wearing his bike helmet but the kids won't be scooting around with us for a while.

We're smitten and I just found a new reason to let the chores go another day. Ciao bella!

It's Not Acceptable R-word PSA

The Spread the Word to End the Word campaign has a new PSA. It will be airing tonight 5/24/11 during Glee at 9:50. Read more about it and the talented actress and self-advocate Lauren Potter HERE

Please be advised that this PSA uses strong language.

Russia's Forgotten Children - ROOF

Years ago when Mark was studying at Georgetown under the brilliant Dr. Murray Feshbach, I first learned of the conditions of the Russian orphanage system. A story on 60 Minutes stuck in my heart and mind that featured Murray who spoke about Russian demographics and orphanages. When Mark and I began planning a trip to Russia in 2003, I knew I wanted to do...something. I began researching on the internet and found Russian Orphan Opportunity Fund - ROOF.

After a couple of hours of devouring their website, I discovered that their US office was located in Racine, WI. We were living in Madison, WI at the time and I just about fell out of my chair. It seemed Divine Providence that we would find them and get involved. We had our first experience raising funds from friends and family to help support the work of ROOF at Podol'sk Orphanage. We were in contact with Karen and Peter Jansson (parents to Georgia) and met with them to turn over the money raised from our generous friends, co-workers, and family. It was enough to support programming in Podol'sk for 3 months.

Though we have remained supportive of ROOF through the years, it is Mark and I who have most benefited from our relationship. Our lives have been forever changed and inspired by the staff, volunteers and the orphans we've met. During a research trip to Russia, Mark lived with the family that co-founded ROOF and we remain in touch with Andrew and Georgia.

I could go on and on, but their website has a wealth of information, including a brand new brochure called Russia's Forgotten Children. I strongly encourage you to check out their website and brochure. Click the image below for the brochure or visit http://www.roofnet.org/forgotten


embedded video from our trips to ROOF in Moscow below. if you do not see the video, refresh the page or click HERE

Make video montages at www.OneTrueMedia.com

Just Another Bump in the Road

Because of those with Down syndrome who have come before us, we know to get our kids tested early and often for things like hearing loss, vision problems, thyroid function, etc. As such I choose to be grateful that we know about Sophie's hearing loss at such a young age.

Sophie recently went under general anesthesia for an Audio Brainstem Response (ABR) and was diagnosed with conductive hearing loss. Her loss is moderate in the lower tones and mild in the conversational levels. Her left ear is slightly worse than her right. This means that she can hear, but sounds are somewhat muffled. She is not likely hearing words clearly which may help explain her delayed speech.

A conductive loss is a problem in the ear vs. a problem with the brain receiving the information. This could be a problem with the three little bones that conduct hearing, fluid (she has tubes & dry ears), or the fact that she (like many with Ds) has super tiny ear canals. These will not be corrected with surgery or growing up, meaning it is likely permanent. She is scheduled for another behavioral test to tweak the results for hearing aids and a CAT scan to rule out mechanical problems that can be corrected. After this she will have ear molds made and begin using hearing aids. Does anyone have experience in keeping young children from removing or chewing hearing aids? We're also finally getting her some suresteps orthotics.

Sophie's yearly IEP was this week and after 2 hours and 47 minutes, we agreed to the supports and services she will need, including 60 weekly minutes each of PT, OT, ST, and an itinerant teacher. For 4 weeks this summer the therapies will be at home. Starting this fall she will go to a typical neighborhood preschool and receive her therapies there. Next we will take her IEP to her new school district (due to our move) and make sure it is enforced.

Now, I'm off to research swing sets and plan Helena's 2nd birthday (May 16th). Can you believe it? I've got a new house to put together and beautiful weather to enjoy. Hug your family and love - better. Happy weekend everyone!

Here's a sneak peak at 1 of many painting projects we're working on. I wrote love notes on the girls' bedroom wall before covering it up with more paint.

Still Here

Life. It's been a whirl wind these past few months. I cannot begin to capture it all nor do I have any realistic hope of catching up in the near future. The best I can offer is a brief summary.

I started my new job nearly three months ago. Though I wasn't looking, my dream job fell out of the sky and knocked me in the head. My position half time and is in the big city, so I take the train twice a week and work some of my hours from home. We are a small non-profit that does huge things and I am so proud of being a part of an organization that works on behalf of children with special needs to make sure they have the best possible education in an inclusive, neighborhood school.

My boss sent me to a conference on inclusion of people with disabilities just days before closing on the new house. It was a life changing experience and this is one topic I hope to blog about soon.

Mark and I are officially home owners once again. We bought a brick twin just down the road from the house we have lived in for the past 10 months. That's 7 moves since we have been together over 12 years. Once I am too old to do the stairs, I'm installing a chair lift because I never hope to move again.

Though we moved close to the old house, it is in a different county and school district. Today was Alexander's first day at his new school and he is loving it. We are writing Sophie's new IEP next week and she will transition (somewhere) in a few weeks. It will be a fight as our new coordinator wants us to ship her a few towns away and that isn't happening. Fortunately, I have made connections to the big guns out here and the new school district has no idea who they are dealing with.

Santa was on something when he brought Sophie the Melissa and Doug latches puzzle which essentially trained her how to be a safe cracker. (see HERE) She has developed into the great Houdini and has left the new house to meet the neighbors at every opportunity. On Easter Sunday we officially made the transition to the new house. We met our next door neighbors when we needed to borrow their ladder. Mark had to climb in a 2nd floor window as the girls had locked themselves in a bedroom. The locks require keys (which we did not receive) and do not have the little push button safety release. Happy Day!

There is so much more to say but I am past exhaustion and just wanted to let you know I'm still here. Oh, and happy 3rd year blogiversary to me!