Wednesday, May 26, 2010


Dearest Lily,

Today was a day of unexpected joy! Every day Mama does "therapy" with you. Every few weeks Karen, your therapist, comes to play with you and teach us new things to do with you. It is all geared towards helping you advance beyond what you would normally do..because that is what early intervention is all about.

Here's how it works.

Babies with Down syndrome typically develop more slowly than normal babies. They generally reach milestones much later...things like lifting their head at a 90 degree angle, sitting or standing alone, crawling, self-feeding etc. Of course there is a broad spectrum of when each baby with Downs will normally reach milestones, as with any baby. Studies in the last few decades have shown that helping babies with DS reach those milestones sooner-more in line with when normal babies reach them- helps them developmentally throughout their life.

Babies with DS used to be placed in institutions. Disgusting, but true. And it wasn't that long ago, as recently as the 1960's. So many died from lack of love- the mortality rate was unbelievable for these babies. Those who made it to the teen years had little hope of ever reaching any kind of potential, because there was nobody to teach them or help them or love them. It was a vicious cycle. Because there was no "intervention", babies and children and adults remained uneducated, did not develop, thus perpetuating the idea that people with Down syndrome needed to be institutionalized..I remember growing up hearing the term "Mongoloid Idiot." (Mongoloid refererring to Mongolia, or people of East Asian descent. ..because most babies with DS have upward slanted, or Asian-looking eyes).

Eventually parents started being...parents...and taking their babies home from the hospital, ignoring the recommendations of their doctors, and raising their children themselves. These parents decided to just love their babies, even if they didn't realize that they needed more than love. Society began to accept the these children, and slowly things started turning.

When Grammi was a teacher for the "mentally handicapped", mainstreaming children with special needs was just becoming a big issue. What people began to see was that isolating children in a classroom with other disabled children wasn't working...there was nothing to stimulate these children, no "normal" children to influence and motivate them. When schools started allowing children with special needs into the "normal" classrooms, the result was incredible. Suddenly these "Mongoloid Idiots" were showing amazing progress, and people started realizing the value of integration.

I read this on Wikipedia..

Early childhood intervention came about as a natural progression from special education for children with disabilities. Research during the 1960s and 1970s showed that the earlier children received special education, the better their outcomes. Research also showed that families who were supported earlier were more empowered to advocate for their child later on (Guralnik, 1997). Many early childhood intervention support services began as research units in universities (for example, Syracuse University in the United States and Macquarie University in Australia) while others were developed out of organizations helping older children. In the 1990s, the many States in the US put into place a program where the child's pediatrician can recommend a child for early childhood intervention screening. These services are usually provided free of charge through the local school district.

If a child experiences a developmental delay, this can compound over time. The principle of early intervention is to provide appropriate therapies for children with disabilities, to minimize these delays and maximize their chances of reaching normal milestones in development. Early intervention begins from birth or first diagnosis, and continues until age three. It involves specialized education and therapy services for the child, as well as support for the whole family through information, advocacy, and emotional support.

During our last therapy session with Karen, I asked her why Early Intervention works- in other words, why we don't just let babies with disabilities reach milestones in their "own timing". What she said made so much sense.

Basically babies have a small window of time when their brains are forming- they are like giant sponges, absorbing every bit of information and processing it...this window of time is crucial to further development, and it is between birth and three years of age. During this time, things are taking place in the brain- neurons are being fired off, synapses formed- that will effect their cognitive development for the rest of their lives. Later on, as they grow, things "harden" and it isn't (as the old saying goes) always easy to teach an old dog new tricks.

We are focusing on getting as much information in as we can during that window of time, to "teach your brain", so that when you are 4 and 5, you are not still learning how to walk- you are ready to learn new information, because your brain is still forming (although not at the accelerated rate of birth to 3).

Soooo...what all that means is it matters A LOT what we do with you every day. We are always finding new ways to stimulate you- whether it's singing songs to you, tickling you, teaching you to roll, to grasp, to lift your head, giving you "tummy time", rolling a "nuk" toothbrush in your mouth and on your gums to trigger nerves, talking to you, playing with you- it's all therapy, it's all geared towards helping you to achieve ALL you can.

One of the things we are doing with you is playing on "the noodle". A normal baby will lift her head without help, and eventually be able to do it without being wobbly. You have a hard time with this, even though you are 4 months old, because of low muscle tone (common with Downs.) SO Karen brought us over a noodle- an orange foam thingy usually used in the pool to help kids float. We place your upper chest on the noodle, and try to get your attention, so that you will raise your head up and hold it there. This strengthens your neck muscles, and eventually will help you to be able to move towards crawling. You usually have a hard time lifiting your head up for a few seconds off the noodle...

BUT TODAY....was a great day!!! You arched that neck and lifted up that beautiful little bald head LIKE A PRO to the cheers of all your brothers and sister and Daddy and Mama. And we were SOOOO proud, you would have thought you just ran the Boston Marathon!!! Mama caught a little of it on video...


You worked so hard, you wore yourself out:) Daddy was so proud of his little Lilybird...


You took a looooong nappy after your little workout..


We are SOOOO very proud of you, Lily Anne. I had no idea how thrilling and exciting and wonderful it could be to see a baby lift her head off a noodle - I'm telling you, it's better than Disneyland. :) I can't wait to see what the future holds!

All my love,

Mama oxox


Danielle said...

beautifully written. we are so proud of her. you guys can be so proud!

Lori said...

I am watching this and crying and laughing at the same time. I am so proud of her and cannot wait to snuggle that little peanut again!!!

fckopp said...

It is very hard to watch a video through tears. I am so happy Lily came into our lives. I am so happy ALL our grandchildren came into our life. Who knew God would be ever so generous to an only child who wanted lots of children so they would not be lonesome. I feel ever so blessed.

Kelly Marin said...

It is so interesting to read about the early intervention. Benjamin my most adorable nephew( Rose's son) started doing physical therapy for the same reasons when he was still in the hospital, Rose does it at home with him. Its so exciting when they master even the littlest big things. Yay Go Lily!

Leah said...

Wonderful post, Patti. I love seeing the great progress Lily is making. :)

Monica Crumley said...

Oh, what a sweet post. I know the feeling when they are so little and you are trying to get them to try something new and they do it! So exciting. The excitement never wears off, either. We feel like constant cheerleaders for our "big" little guy. Thanks for saying hi on our blog :-) Lily is beautiful.