Wednesday, September 14, 2011

Babies with Down Syndrome

All of these children pictured are orphans with DS 
As the weather begins to cool off, my desire to snuggle up with a good book begins to creep over me.  So, because of my abundance of non-fiction reading consumed by adoption this...adoption that...I am afraid my brain will explode if I have to read anything else to that effect.

I am dreaming of getting lost in a book, a fantasy, in a surreal world, in someone else's life, and their problems.  It could even be inspirational fiction based on true events.  I love Francine River's.  I love the Mark of the Lion series and the Lineage of Grace series. So I may end up going that route again...

But in the mean time, I had one other book that was suggested to me.  It was called Babies with Down Syndrome.  In fact, thanks to our awesome early intervention program, Parents as Teachers, in our community, the book was hand-delivered the NEXT DAY by a sweet friend/teacher.

Here's what I've learned so far...the basics-
   Down Syndrome (DS) means that your baby has a genetic condition resulting from the presence of one extra chromosome in some or all of his cells.  Babies with DS have three copies of the 21st chromosome, instead of two.  Many mother's of children with DS, say their baby's have 'designer genes!' (love that!) 

Common Features of baby's with DS: Low muscle tone in all areas of the body, smaller noses, ears, and mouths, upward slanting eyes, slower growth/development, short fingers and small hands and the palm of of each hand may have one crease across it

  3 Types of DS: Nondisjunction, Translocation, Mosaicism

  Importance of Early Intervention: EI is usually provided by a local program offering services in areas of occupational therapy, physical therapy, speech-language pathologists, audiologists, mental health specialists, social workers, registered nurses, service coordinators, and OF COURSE the parents.  These services are provided in our home after a series of evaluations, usually until age 3. (this is specific to our county)  Then the child is eligible to participate in a school/community program.  For our community, this would be Head Start.

Development: Babies with DS develop similarly to children without DS, but usually at a slower rate.  Development is measured in several areas like communication, social/emotional, motor, cognitive, and self-help. Influences on development include genetic make-up, family life, health, educational opportunities, social life, stimulation, community (HINCE THE IMPORTANCE TO ADOPT THESE CHILDREN QUICKLY SO THESE NEEDS CAN BE MET)
           1. Babies with DS spend more time looking at faces and engaging with people than other babies do
           2. They spend more of their time seeking attention from people than playing and exploring toys and the physical world
           3. They are very good at understanding how other's other words they know how to get the reactions they want from adults and can use that to their advantage :)
           4. Because of low muscle tone, many children with DS don't develop walking, crawling, and speaking skills until later in their development--while they may develop slower early on, many people with DS go on to excel at sports and leisure activities as adults.
           5.  Children with DS understand language and tones early on but are usually not able to verbalize their thoughts until 24-36 months of age.  Developing clear, intelligible speech is a difficulty.  There are a few reasons that are given for this: hearing loss, anatomical differences, and motor planning and control difficulties. Sign language is a suggested form of communication to use as a bridge to talking. 

           6.  Children with DS have good short-term memory skills compared to verbal ones.  They learn easier from visual cues, rather than verbal ones.

Common medical concerns for Babies with DS:
40-60% of all infants with DS have some type of heart defect
Babies with DS are more likely to have birth defects involving the GI tract  (5-7%)
Constipation is another common problem because of low muscle tone
Orthopedic problems
Upper respiratory infections due to smaller midfacial areas including nasal and sinus passages
Sleep apnea
Hearing loss
Dry skin

What I Know So Far In my Experiences: Children with DS can function at increasingly higher levels with proper medical care, education, social acceptance, early intervention, proper nourishment, and love.  Adults with DS are very independent.  They can work at jobs, play sports, sing and play music, interact with adults and children, love to dance, are prone to obesity, don't do anything they don't want too, are VERY smart at knowing your weakness and can play off of them, LOVE hugs, remember everything and don't forget any promises you make to them in their favor, love to look at themselves in the mirror, love to laugh, are great at making you laugh, will pick you up if they can, are competitive, can touch their noses with their tongues and laugh at all my failed attempts, are ORNERY  :), LOVE you like there is no tomorrow, greet you with a hug no matter where you are, how sweaty/stinky you are, have very sensitive hearts/souls, wear their emotions on their sleeves, are stubborn, can bargain with the best of them, they are flexible beyond belief, LOVE McDonald's, love personal attention
And I CAN'T WAIT to bring Blake home so I can learn from him everyday about what life is really all about!