Thursday, November 4, 2010

Thankful That We Are Not Alone - Guest #3

I am incredibly honored to share with you our next guest. She has a blog that I have been following for about 6 months called The Ordinary Life of an Extraordinary Girl which chronicled her daughter, Alex, who was 16 and a Sophomore in High School. She has started the second "chapter" of her story which is chronicling Alex as she is 17 and a Junior. This has the same name, The Ordinary Life of an Extraordinary Girl but has a different URL. This (these) blogs have been an enormous resource for me and has offered advice, on purpose and just by virtue of the stories she shares. Alex is an amazing girl and I hope Elise can follow in her footsteps!

Please welcome Gary as she shares what is on her heart:

"My extraordinary daughter, Alex is 17 years old. We call her extraordinary because she is...she has an extra chromosome, and an extra huge smile, and she brings extra sunshine to our lives. However, this does not come without it's challenges, particularly related to education. which is a right guaranteed to all children.

In these past 17 years I have learned a lot about the education of children with special needs, and in particular, Down Syndrome. There have been lots of good and some bad. Alex has learned to read, write, add, subtract, multiply, divide, tell time, count money, speak clearly, and advocate for herself...the list goes on and on.

In today's world all we hear is "budget cuts" and I know there are massive budgets measures being handed to our educators and the educational system. However, I do not believe that because there are budget cuts, our kids should suffer. Through teamwork, brainstorming, and maintaining good relations with Alex's team we are still able to create an inclusion and supportive environment. this is the only was my extraordinary daughter learns, just like her brother, her sister, and her "regular peers".

I fear that these budget cuts are mostly affecting the youngest kids, or the zero to three population. I believe that early services, or commonly called early intervention, should be mandatory for all children with special needs. I also believe, in most cases, a balance between public and private services must be considered.

There are countless stories and studies proving this. I have seen and heard of children that were born in the forties and fifties who were either institutionalized (as that was the common advice preached by the medical community) or kept in seclusion in their homes. We can compare these babies, as adults, to those children that were brought home from the hospital, educated and received early intervention - mostly by their parents and siblings. This life-style guaranteed their successes, and many of these disabled adults are active members of our communities today.

Our school district had a program called PIE. I cannot remember the real name and it is no longer in existence in that form. In this program, other moms with kids between the ages of six months and three years, met once a week in a classroom and had our version of a playgroup. This included speech, occupational, and physical therapists, as well as an early childhood educator. These services were also available more often as initial assessments and evaluations were made, and appropriate therapies recommended.

We moms were also able to share and support - a very important thing to a parent with a baby with disabilities. We were able to get thoughts and ideas on our children's strengths and weaknesses from professionals. I knew very early on that we did not need to concentrate on Alex's muscle tone - her strength would come - but we did need to focus on her speech.

To that end we worked with a private speech therapist - at the time is was covered by insurance - and Alex learned to sign. Signing was a miracle, it turns out. Children with Down Syndrome do form language in their minds, but have difficulty transferring this to understandable sounds. Speech is very delayed.

The theory behind signing is kids will gain confidence when they learn their families can understand their needs. This will help language come faster. Alex was able to make simple signs, "more", "play", "drink" at eleven months. We were able to communicate and it was gratifying for all of us. She spoke her first words and 15 months and her real sentences came at three.

Speech is still a huge issue for us. We are certainly able to understand Alex and she does speak in full sentences. But, this has been a huge challenge for us in the school system - kids with Down Syndrome need reinforcement. Someone once said to me "Alex talks, isn't that enough?" Absolutely NOT, with out constant reinforcement she will regress. Alex now speaks clearly, in sentences and we have great conversations. She had a great foundation to work from, and always improves.

I do not want to leave the impression that this is a struggle - sometime it is - but often it is not. We have met caring and concerned educators and professionals in Alex's journey through the educational system, and we have met others that are not as caring. But, overall I believe, that with the right people and right services - Alex will succeed and will leave a positive impression on everyone who crosses her path. And that's part of our job as parents of this extraordinary girl.

Our kids have the same right as all kids...but sometimes we have to work a little harder to make it happen. Believe me, it is worth every second, every day and every year we spend. The rewards and promise of a big, beautiful future cannot be compromised."


  1. Being an advocate for our child's education is an important lesson no matter the specific issues our child deals with. Thanks for the reminder!
    Your daughter really is extraordinary. You have a lot to be proud of with her.

  2. Your experiences, words, and ultimately the example of your daughter's life bless and encourage those who come along behind you in this journey. As you know the unknowns can overwhelm and loom so large - often even obstructing the path to growth. Alex is a joy and blessing! Thank you for taking time to share your story - and nudge parents toward the Light!