Monday, March 26, 2012

Doctor Day

This morning I took all three kids to their new pediatric dentist (by myself). I'm thrilled to say that they all did really well. Alexander went first to show his sisters how it's done. He got an x-ray and we learned that he was born missing a couple permanent teeth. Oops. Coupled with the spacing of his teeth and his overbite, he's looking at braces, possibly as soon as a year or two from now.

Helena A.K.A. Schmoogie went second. She wore sunglasses provided by the dentist and had no problem getting her exam, cleaning and fluoride treatment. We need to do a better job brushing her back teeth, she's very healthy, but needs to lose the pacifier.

Soph went last and was very cooperative. She also got an exam, cleaning, and fluoride treatment. She only bit down on the brush once, which is pretty good considering that she tends to chew her toothbrushes. We are very impressed with our pediatric dentist and techs.

3 kids, 0 cavities. Afterwards we took Alexander back to school and the girls and I headed to their pediatrician's office. I'm not a parent who takes the kids to the doctor's office for a cold or flu. From October - April one of us in this family usually has a virus of some sort, though Sophie is much more prone to respiratory illness then the rest of us. It's just been too long with this last round of coughing and snot for my comfort. Also, as Mark and I prepare to head to Switzerland and are leaving the kids in the care of the great Grandma Paula, I decided it was time for a medical opinion.

So, both girls are suspected to have inherited my seasonal allergies, oops, and both girls have a sinus infection. Helena also has an ear infection. We thought it would be a good idea to have Alexander looked at since he has a similar cough, though it seemed to be getting better.

The girls and I spent the rest of the afternoon running errands and when Alexander got home from school, we headed back to the doctor. He too is suspected to have inherited my allergies, has fluid in one ear, and a sinus infection.


We headed to the pharmacy and waited an hour to NOT get the prescriptions filled. The girls have their meds, but not Alexander. I'm not a happy camper. Thankfully, I have wine and a fabulous trip coming up very soon to assuage my nerves. The great Grandma Paula will arrive tomorrow and it will be all better. Thank G-d for access to good health care.

Wednesday, March 21, 2012

Celebrate World Down Syndrome Day

Today is the 7th anniversary of World Down Syndrome Day and it is the first year that it is officially recognized by the United Nations. Across the globe family and friends are celebrating our loved ones who sport designer genes. DS or Trisomy 21 means that there are 3 chromosomes where typically there are 2 on the 21st set. Hence, 3-21 or T-21. March 21st has been chosen as the day to celebrate Down syndrome for this reason.

This is Sophie's karyotype, or map of her chromosomes. Look closely to see the trisomy of #21.

The timing of this celebration is especially important to us as it marks the anniversary that our family learned that the child I was carrying had Down syndrome. We were shocked and scared but we chose to keep our precious gift. On that day we decided to name her Sophia, which is Greek for wisdom.

A big part of my job as her advocate is to educate. Are you aware that 90% or higher of prenatally diagnosed babies with Down syndrome are aborted? In some places like the former Soviet Union, children born with disabilities are almost always refused at the hospital and are sent to live out a miserable and often short existence in an institution. Organizations like Reece's Rainbow and Russian Orphan Opportunity Fund (ROOF) work hard to change the fate of these discarded children while Denmark boasts that they are working towards a Down syndrome free, perfect society.

Today, somewhere a pregnant woman is being given the news that her child has Down syndrome. Many will pressure her towards termination. Through connecting to families like ours, she can learn the whole picture. She can be given hope that she can do this and that she will be immediately accepted by the greatest extended family, the special needs community.

Raising Sophia has been an honor and a privilege. She has been our teacher and her lessons have been of unconditional love, acceptance, patience, respect, kindness, perseverance, and joy. By sharing our family with the world, it is our life's mission to educate others that disability does not mean the end of the world. People with special needs belong in our community just as much as everyone else and they have so much to offer if we would just open our hearts and minds. We chose Sophie and we have never looked back.

Please watch this absolutely beautiful video created by my sweet friend Diane. She stands strong in her convictions and I respect her for it.

Monday, March 19, 2012

St. Patrick's Weekend

Click the collage photos to enlarge

Between the sunny 70+ degree weather and the holiday, we had a fabulous weekend. Our friend Patrick had a birthday party, complete with 40s of beer for his 40th birthday at a neighborhood pizza parlor. They are such a sweet family.

On Saturday we met friends at a petting zoo. Later we spent time at our neighborhood park with the Kersting family. For dinner, we had a wagon & stroller caravan to a neighborhood pub. A Reuban and Guinness(es) made for the perfect meal. On Sunday we played in our back yard "park" to celebrate Mark finishing his 2nd book and Miss Clara tried out her swing for the 1st time!

We live for these days.

Wednesday, March 7, 2012

Happy Spread the Word to End the Word Day!

Today is the 4th annual Spread the Word to End the Word Day and it is considered a sacred holiday for our family. Today is the day that all across the globe, people are speaking up about the power of language by educating others that the use of the word retard(ed) when used in a derogatory way is hurtful to people with disabilities and those of us who love them.

This is a campaign for respect and acceptance. It is not an attempt to be Thought/Politically Correct/Word Police. In the words of Timothy Shriver, "You're allowed to be humiliating, degrading, and hurtful. I'm allowed to petition you to at least recognize what you say and be aware of the option you have to stop."

It's really that simple. We raise awareness about the words we chose to use and by doing so create a more inclusive and safe world.

So what can YOU do?
First, take the pledge at
Share this message with your contacts
Watch and share the many videos on YouTube or upload your own
Use your social media websites to spread the word
Below is a photo custom designed to use as your facebook timeline cover photo

Grab this badge to place on your blog or website
I am personally asking every single one of you reading this to share this message. Do it for Sophie. Do it for all of us in the beautiful disability community. Do it for dignity.

We thank you with hearts overflowing.

For more posts about this important issue, do a blog search here by clicking on the Label below, the "R" word.

Tuesday, March 6, 2012

Where I am Supposed to Be

I recently took note that I have been in my new position as Program Coordinator at PEAC, Pennsylvania's Education for All Coalition, Inc. for a full year now. I am blessed to be working at an organization that is doing outstanding work in the disability community. PEAC's innovative Parent Consultant Network, PCN, views parents as experts. The PCN is utilized to provide one-on-one assistance to other parents and to provide presentations at colleges and universities. For their time and wealth of knowledge, the parents are paid nicely. As most of us know, this is the type of work that we usually do as a volunteer because of our commitment and passion. Sounds pretty good, right?

We just hosted another successful IEP Clinic where families were paired with experts (big name attorneys, advocates and other parents) to work on improving their child's IEP. For free. Plus free day care. We had a waiting list and are already planning the next one in May.

Just as we were wrapping up our 1st ever Inclusion Conference (a monumental 3 day event in Philly) in November 2011, a small group of us were charged with writing a grant to the PA DDC or Developmental Disabilities Council. We dreamed, we discussed, and we wrote and wrote. The RFP was sent on its way in early December. As our current grant is coming to a close at the end of June, no more funding would very likely mean no more position for me and limited work for the PCN and PEAC. Then we waited with bated breath. For months.

Finally we got word that our proposal has been recommended for funding! We will continue to do much of the same work that we currently do. However, the new element that I'm most proud of is the development of the Self Advocate Network. Modeled after the PCN, we plan to utilize adults with developmental disabilities as experts. We will pay them to share their stories and educate the future teachers of our country.

This is a dream come true. Let me say it again. We received funding that supports our idea to PAY self advocates to be involved in systems change, to be held up as the keepers of a wealth of knowledge, to be involved in training our future educators and in turn creating a better educational experience for our children with disabilities and without.

There are many other wonderful aspects of this new grant which starts July 1st. In case anyone is interested, below is a piece I lifted from the RFP.

Pennsylvania’s Education for All Coalition (PEAC) has established many strong partners with parents, schools, and students with disabilities throughout Southeastern Pennsylvania. PEAC proposes to strengthen these partnerships to develop and promote cultural change within schools regarding inclusive education. PEAC’s Parent Consultants will provide high-quality training, support, and resources to parents and families of children with disabilities, including underserved families, low-income parents, and parents of limited English-proficient children to empower them to collaborate with educators and ensure their children are being educated in the least restrictive environment. To do this, we will continue to work with our 5 existing school district partners. These districts are committed to working with PEAC to ensure that all children can be active participants in their schools and communities. Our five university partners will continue to work with the school districts and PEAC’s Parent Consultants. Throughout our work on the Educational Rights Project, several modules such as the Working Collaboratively: The Key to Success module showcase the work and commitment of collaboration between these partners. There is a foundation of school administrators, building principals, families, and students who are leaders capable of building and strengthening inclusive schools and communities with the right support. The model for cultural change within schools will have the following components and will address the DDC objectives for Improving the Knowledge Base, Selecting Clear Social Strategies, Obtaining Stakeholder Involvement and Supporting Policy Entrepreneurs:
• Develop Inclusion Committees that include students, families, and people with disabilities, school administrators, building principals, teachers and university personnel in each district.
• Conduct roundtables and community forums to solicit both members and member-generated ideas for strengthening inclusive education.
• Develop a network of student self-advocates who will receive training and support to share their educational experiences and beliefs regarding inclusive education and disability. This will include the leaders who have benefited from the C2P2 Emerging and Established Leadership development program.
Collaborate with agencies such as the Latino Project who provides technical assistance to the Latino community. Recruit these family members to become Parent Consultants.
• Develop a Council of Cultural Brokers: PEAC will identify leaders within the targeted regions/neighborhoods that are willing to act as cultural brokers who can extend their influence and trust to resident families of children with disabilities. These may be religious leaders, neighborhood business leaders, neighborhood elders and others.
• Conduct IEP clinics that will serve as both trainings and opportunities to provide one-on-one technical assistance to families and educators.

I won't be coming off of cloud 9 for a while. Care to join me?

Friday, March 2, 2012

Happy Birthday Theodor Seuss Geisel

In our home, books written by Dr. Seuss have been a multi-generational form of entertainment and source of wisdom. Dr. Seuss played a major part in our love of reading, imagination, and language. It went without saying that our children would also experience the wonderful world of Dr. Seuss.

We have read these books (often the original copies read to us as children) to our babies since before they could speak. The ORIGINAL Grinch Who Stole Christmas is a favorite film and the girls often drift off to sleep after the Foot Book at bed time.

Personally, my hands-down most favorite book of all time is the Lorax who speaks for the trees and I couldn't be more thrilled or apprehensive that it has been made into a movie. Previous Dr. Seuss movie incarnations have fallen quite far from my expectations. Perhaps that is because there is really no comparison to the versions that we create in our minds versus what is played out on the big screen. Nevertheless, I look forward to taking the kids to the new Lorax movie and hope it has done justice to this important story.

Tonight I will read them to sleep with the unmistakable rhyme and imagination of a genius that I admire and thank profusely. Happy Birthday Dr. Seuss.

And now for a blast from the past, Alexander's reading of Green Eggs & Ham as a mere 3.5 year old, read at his grandparents home when they lived on Mount Zubba Bubba, TN. If you can't see it, click HERE for the original post.

What is your favorite Dr. Seuss book?