Wednesday, November 13, 2013

Please Don't Be Sorry

I recently reconnected with an old acquaintance.  We spoke on the phone for the first time in ten years.  After the initial hello, she mentioned my having three boys (saw their pics on Facebook).  I told her each of their names, ages, and mentioned that Josiah has Down syndrome.  Her immediate response was "Aw.  I'm sorry."

I think it was my first, "I'm sorry."  I quickly responded, "Don't be sorry; I'm not."  I continued, "Josiah is an amazing little boy.  His only difference is he carries an extra chromosome.  I would be lost without him."

I wish people could understand their own ignorance.  I have visited many friends with new babies.  Not once have I said, "I'm sorry."  A baby is a gift from God (if that's your belief), a blessing, a treasure.  A baby is not something to be dreaded, feared, or apologized for.

I have never looked at Josiah and been sorry.  Everyday, he teaches me about love, patience, and compassion.  He has introduced us to the most amazing network of parents who share similar miracles.  Our children make us strive to be better people.  Our children are our greatest joy.

Sometimes I sit, watching them play.  I imagine what each will be like, as they grow into young men.  I wonder who will they will be as adults.  This much I know: they will be the same amazing people they are now.  As I grow, each day, with them I pray to always do best by my children - may WE make THEM proud.

Saturday, November 9, 2013

Did You Just Call Him Chunky?

"Tell his Mama to back off on the food.  He's getting chunky."  Yes, those were the words spoken by our pediatrician yesterday.  C brought Josiah for his 2nd year well-check up.  He weighed in at 28 pounds, 7 ounces.  He's 34.5 inches tall.  The MD admitted that Josiah has defied the profile of Down syndrome.  He is neither underweight or under height.  He is a thriving little boy.  

In the beginning, there was a little boy who struggled to gain an ounce.  In the beginning, there was a little boy who ate but didn't gain.  In those days, a breastfeeding mother wondered, and prayed, when the weight would follow.  During it all was K, a stranger-become-friend - someone I have never met.  After every weight loss, every 'failure to thrive' suggestion, every 'supplement breastfeeding' recommendation - my go-to person.  She is the reason I continued to breastfeed (until nearly age 2).  I couldn't have gotten through those early days without her.

It only made sense that I called her yesterday.  We chatted for some time.  This time, we enjoyed the memories of what once was.  We revel in what has come to pass.  We remain amazed by this little man with an extra chromosome.

Now, all these months later, I chuckle at the description of Josiah being 'chunky.'  This fact had not eluded me.  I have been referring to his Buddha belly for months.  How funny those words struck me yesterday.

Yes, Josiah has a little belly.  I know when he starts walking, he'll trim down.  In the meanwhile, we continue as always.

Life is good for Josiah....all 28.7 lbs of him.

Life is perfect here :)

Saturday, November 2, 2013

31 for 21 Challenge: Day Thirty One. Halloween

We brought the boys Trick or Treating at a local Mall.  It's our yearly tradition.

We were about 1/2 way through the mall when a security officer approached us.  He was looking at Josiah.  He asked, "How old is he?"  I responded, "Two years old."  He responded, "My son looks just like him" and gave me a wink.  I asked, "How old is your son?"  "30" he replied.  I smiled.

He continued, "People just don't understand what a blessing it is."  "You don't get love like that from anywhere else."  "People say they're sorry, but I say don't be sorry; We're not."  "It's an amazing blessing."  I agreed.

He was a nice man.

He went out of his way to say hello.

He went out of his way to connect.

It was a nice!

That was the highlight of my evening :)


31 for 21 Challenge: Day Thirty. Tips for Parents

Tips for Parents

  • Learn about Down syndrome. The more you know, the more you can help yourself and your child.
  • Love and play with your child. Treat your son or daughter as you would a child without disabilities. Take your child places, read together, have fun.
  • Encourage your child to be independent. For example, help your son or daughter learn self-care skills such as getting dressed, grooming, and doing laundry.
  • Give your child chores. Keep in mind his or her age, mental capacity, attention span, and abilities. Divide tasks into small steps. Explain what your child is supposed to do, step by step, until the chore is done. Demonstrate. Offer help when it’s needed and praise when things go well.
  • Work with the professionals who are working with your child. Participate in team meetings where your child’s education or program is being planned, share your unique knowledge of who your son or daughter is, advocate that the program address your child’s needs.
  • Find out what your child is learning at school. Look for ways to apply it at home. For example, if the teacher is reviewing concepts of money, take your child to the supermarket with you to help keep track of what money you’re spending.
  • Look for social opportunities in the community (such as Scouts) or activities offered through the department of sports and leisure. Joining in and taking part will help your child develop social skills and have fun.
  • Talk with other parents whose children have Down syndrome. They can be a fountain of practical advice and emotional support. Visit the websites of the organizations listed below to see if they have a parent group nearby.
  • Be patient, be hopeful. Your child, like every child, has a whole lifetime to learn and grow.
  • Take pleasure in your beautiful one. He—she—is a treasure. Learn from your child, too. Those with Down syndrome  have a special light within—let it shine.

31 for 21 Challenge: Day Twenty Nine. Help for Babies and Toddlers

Help for Babies and Toddlers

When a baby is born with Down syndrome, his or her parents should know that there’s a lot of help available—and immediately. Shortly after the diagnosis of Down syndrome is confirmed, parents will want to get in touch with the early intervention system in their community.
Early intervention is a system of services designed to help infants and toddlers with disabilities (before their 3rd birthday) and their families. It’s mandated by federal law—the Individuals with Disabilities Education Act (IDEA), the nation’s special education law. Staff work with the child’s family to develop what is known as an Individualized Family Services Plan, or IFSP. The IFSP will describe the child’s unique needs as well as the services he or she will receive to address those needs. The IFSP will also emphasize the unique needs of the family, so that parents and other family members will know how to help their young child with Down syndrome. Early intervention services may be provided on a sliding-fee basis, meaning that the costs to the family will depend upon their income.

To Help Babies and Toddlers:
Accessing the Early Intervention System in Your State

To access early intervention services for a child up to his or her 3rd birthday, consult NICHCY’s State Resource Sheet for your state. It’s available online at:
There, you’ll find a listing for early intervention under the first section, State Agencies. The agency listed will be able to put you in contact with the early intervention program in your community.

31 for 21 Challenge: Day Twenty Eight. Textures

Textures can be a problem for children with Down Syndrome.  Some kids with DS have a hypersensitivity to taste, temperature, and textures.

Most kids with Down Syndrome are born with low muscle tone.  Low muscle tone, along with differences in the physical structure of the mouth or tongue, plus other medical complications (such as heart defects, etc) can contribute to the delay of solid food introduction.  Additionally, research indicates that kids with DS take longer to progress through the stages of chewing development.

There is a great chart indicating motor/oral motor milestones for feeding development.  It can be found here:

Here is a simplified list of feeding developmental milestones:

Before birth, the baby:
Begins to develop the sucking and suckling reflexes around 36 weeks.

At birth to three months, the baby:
Demonstrates many reflexes to protect his/her airway.
Responds to stimulation in and around the mouth.
Turns his/her head toward the nipple when the caregiver strokes the cheeks.
This signals that the baby is ready to eat.
Consumes breast milk or formula using a nipple.
Coordinates his/her breath with two to three sucks of liquid before swallowing and
At three to six months, the baby:
Brings both hands up to clasp the bottle but needs assistance holding it.
Consumes rice cereal or pureed fruit and pureed vegetable baby foods.
Eats from a small infant/toddler spoon during feeding.
At six to nine months, the baby:
Holds the bottle independently.
Cleans the spoon with his/her upper lip.Eats pureed meats and a variety of pureed baby foods.

At nine to twelve months, the baby:
Demonstrates lip closure while swallowing liquids and soft solids.
Begins to self-feed by using his/her fingers to grab small foods. The baby may
attempt to eat small, soft dissolvable solids (i.e., soft crackers and small cereals
like Cheerios).
Begins to experiment drinking liquids from a sippy cup.
Begins to consume mashed table foods.
Drinks out of a sippy cup and attempts to hold the handle independently.
Begins to drink through a straw.
At twelve to eighteen months, the toddler:
Coordinates sucking, swallowing, and breathing patterns for longer

Begins to eat finely chopped table foods.
Bites through crunchy foods such as cookies and crackers.
Moves the food in his/her mouth from side to side as he/she chews.
At eighteen to twenty-four months, the toddler:
Feeds him/herself using a spoon but may still need assistance.

At twenty-four to thirty-six months, the toddler:
Consumes a variety of liquids and solids through straws and open mouth cups.
Uses a spoon to scoop soft foods while feeding him/herself.

Independently moves toward fine tuning all feeding skills.
At thirty-six months to five years, the child:
Progresses toward chewing and swallowing advanced textures (meats, fried foods, whole fruits, etc.) with close supervision by a caregiver.
Begins (with close supervision) to use a fork to stab food.Drinks from an open mouth cup with no assistance.

What I'm excited about is that Josiah currently falls in the 9-12 month milestone category.  They delay is more on me, than Josiah.  I haven't been as quick to introduce some things as I should have.  Having this list is nice.  I know what to work on next :)

"Perseverance is not a long raceshort races one after another."
- Walter Elliott

31 for 21 Challenge: Day Twenty Seven. Teething Chart

This is a chart indicating a 'typical' teething schedule:

Primary teeth are also called baby teeth or deciduous teeth.
There are a total of 20 primary teeth:
     8 incisors
     4 canines
     8 molars
The begin to erupt from the gums at 6-7 months.
Eruption of baby teeth should be complete by age 3 or it is considered atypical.
According to research, children with Down Syndrome (DS) tend to demonstrate a delay in primary teeth eruption.  Not only is eruption often delayed, but teeth often follow an abnormal sequence.  In some children with DS, eruption may not begin until age 2.  Complete eruption (of all 20 primary teeth) may be delayed until age 4 or 5.
Here's another 'typical' chart for tooth eruption:

Average times of tooth eruption

Upper teethLower teeth
Primary teeth
Central incisors8-13 months6-10 months
Lateral incisors8-13 months10-16 months
Canines (cuspids)16-23 months16-23 months
First molars13-19 months13-19 months
Second molars25-33 months23-31 months
Permanent teeth
Central incisors7-8 years6-7 years
Lateral incisors8-9 years7-8 years
Canines (cuspids)11-12 years9-10 years
First premolars (bicuspids)10-11 years10-12 years
Second premolars (bicuspids)10-12 years11-12 years
First molars6-7 years6-7 years
Second molars12-13 years11-13 years
Third molars17-21 years17-21 years
In a person with Down Syndrome, there may be numerous dental concerns.
A lot of people with DS have smaller upper jaws.  Their tongue may protrude causing the person to 'mouth-breathe.'  Upper and lower teeth may not fit together properly.  In a person with DS, teeth are often smaller and have more irregularities.  The delay of teeth may affect a parent's ability to introduce certain foods (as the child won't be able to chew adequately).  Sometimes teeth are missing or malformed.  I found surprising that the rate of tooth decay appears to be less frequent in a person with DS, though periodontal disease is still possible.
When we had Jesse, he was the only one from whom we could gather a baseline.  As luck would have it (lol), Jesse was very quick to teeth.  He got his first tooth at 3 months old; he had all the teeth of a two year old on his FIRST birthday.  So, five years later, it is no surprise that he has lost two baby teeth, gained two adult teeth in addition to 3 of his 4 six year molars.
I would have to guess that James was "average" in his teething though I don't recall a lot of specifics.  His teething seemed slow because Jesse was "unusually" quick.
When Josiah was seen by dental in June (he was 8 months old), he hadn't developed any teeth yet.  The dentist said to us, "Don't be surprised if Josiah doesn't get any teeth until well after his first birthday."  I think Josiah was listening.  I think he abruptly decided to prove the 'expert' wrong.  (This seems to be a favorite past-time of Josiah's).
Over the summer, age 9/10 months, he gained his two lower central incisors ('normal range' 6-10 months).  Last week, age 11 months, he gained his first upper canine ('normal range' 16-23 months).  Yesterday, days shy of 1 year, he sprouted his two upper central incisors ('normal range' 8-13 months) AND one upper lateral incisor ('normal range' 8-13 months). 
I've said from the beginning (even while pregnant), Josiah is going to surprise people.  He will accomplish more than anyone can even dream!  Look out world!!!  Here comes Josiah :)
"Don't underestimate me!  I would never do that to you."
- unknown author

31 for 21 Challenge: Day Twenty Six. Encouraging Era for Treating Down Syndrome

Interesting Article: "Encouraging era for treating Down syndrome"

Encouraging era for treating Down syndrome

Ashley Sanchez, Regular Contributor

Clinical trials for Down syndrome? A Down syndrome research lab right here in Austin? Attend college my oldest daughter?

My head is spinning. After 19 years of intimate familiarity with Down syndrome (our first child, Cristina, was born with it in 1992), I thought I was up to speed on the genetic condition that causes cognitive impairment. I'm delighted to learn that I was wrong.

Dr. Jon Pierce-Shimomura is an assistant professor of neurobiology at the University of Texas who is conducting research on Down syndrome as well as utilizing the skills of adults with Down syndrome to conduct research. Pierce-Shimomura's passion is contagious, and it's personal. His 10-year-old son Ocean has Down syndrome.

When I visited Pierce-Shimomura's lab recently, he enthusiastically showed me C. elegans and explained why he believes that the tiny worms hold such promise in finding treatments for Down syndrome, Alzheimer's and Parkinson's diseases.

The worms, approximately 1 millimeter in length, have roughly the same 25,000 genes that we humans have. Because they are translucent, it is easy to peer inside of them with a microscope, and they have a brief life cycle — up to about two weeks, "if you pamper them," he said. Thus, C. elegans are middle-aged when they are 5 days old, making it efficient for researchers to study numerous treatment approaches for Alzheimer's and Parkinson's in a short period of time.

Pierce-Shimomura, along with Dr. Adela Ben-Yakar in the school of engineering, received a $3 million grant from the National Institutes of Health to study Alzheimer's on worm models of Down syndrome. Pierce-Shimomura explained that it's hard to predict what people in the general population will develop Alzheimer's, but we know that almost everyone with Down syndrome will. Thus, "It's people with Down syndrome who are most likely to lead to the first drugs to treat Alzheimer's disease."

Pierce-Shimomura is one of several researchers who in recent years has begun to study treatments for Down syndrome. In fact, pharmaceutical giant Roche has just initiated a Phase 1 clinical trial of a drug to improve cognition in people with Down syndrome.

The Down Syndrome Research and Treatment Foundation was founded seven years ago to help spur on such research. NIH funding for Down syndrome research has lagged that of other conditions. For example, according the foundation, although 400,000 Americans have Down syndrome, the NIH devoted only $55 per capita on research, compared with $2,867 per capita on research for Cystic Fibrosis, which affects 30,000 Americans.

Those of us who love someone with Down syndrome share part of the blame for the inadequate funding. While other advocacy groups aggressively sought research funding, we've focused our efforts elsewhere: advocating for better education, jobs and integration within our communities for our sons and daughters. We've been relatively successful. Even without treatment, our children have succeeded in school, found a wider variety of job opportunities and achieved varying levels of independence. Now a few innovative colleges are finding creative ways to serve our students.

"I am personally trying to open the doors for people with intellectual disabilities at the college level," Pierce-Shimomura. "They've done so well at K-12, there's no reason why they can't shine at college."

Twice a year, he offers a six-week science course for approximately 10 students with Down syndrome and five UT students. During the most recent session, the students were conducting research with C. elegans to study Parkinson's disease. Pierce-Shimomura has applied for a grant to be able to hire a couple of the students to help with research in his lab part time.

We're entering an incredible era, one in which students with Down syndrome might be able to hold jobs in a research lab, attend class on college campuses and get treatment to improve cognition. For those opportunities to come to fruition, however, we need vastly improved funding for research, and we need a widespread effort by colleges and universities to explore innovative ways to welcome these students.
It's exciting to know that right here in Austin, Jon Pierce-Shimomura is helping usher in this era.

Sanchez lives in Cedar Park.

31 for 21 Challenge: Day Twenty Five. Failure to Thrive

A repost from 9/25/12:

Josiah was born weighing a healthy 7 lbs - ironically, he weighed more than either of his brothers at birth.  However, it didn't take long to see that he simply wasn't gaining weight as readily as his peers.  For those of you who have read the blog from the beginning, you know this has been a sensitive issue for me (given that Josiah was/is a breastfed baby).  We have persevered.  Josiah has done the same.  His providers have been patient (I was never willing to stop breastfeeding, only willing to supplement). 

'Failure to Thrive' has always been that phrase we didn't want to hear.  We didn't want Josiah diagnosed with "failure to thrive."  Though it's just a concept, I guess the name sounds so horrific to Carl and I.  Despite providers not using it, it still remained.  It was the (usually) unspoken truth.  I say usually, because hidden on a medical summary somewhere are the words 'history of failure to thrive.'  Carl and I have never considered Josiah as failing to thrive.  So, I set out to check definitions.

Johns Hopkins refers to failure to thrive in this way: "Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. Infants or children that fail to thrive seem to be dramatically smaller or shorter than other children the same age."  It goes on to say that failure to thrive can be the result of physical problems (such as Down Syndrome) or environmental problems (such as abuse/neglect).

Ok, fair.  I can agree that Josiah does not match the weight of other children his age.  I guess it's the phrase that is despised.  It feels like it implies something sinister.  Perhaps, in some cases it is caused by something sinister. 

I've never brought myself to write about this as it's so personal for us.  However, yesterday gave me good cause to mention it. 

Josiah came down with a fever on Sunday.  101.3.  It was late in the afternoon.  He was crying non-stop, difficult to console.  I finally gave him a small dose of Tylenol and called the pediatrician's office.  An RN was on the phone within a few minutes.  We agreed, Josiah could wait until morning to be seen.

I knew the pediatrician's office opened at 8:30, so I was up, showered, and dressed by 8.  I was watching the clock with the intention of calling them at 8:35.  Well, as usual, they beat me to the punch.  At 8:15, our phone rang.  Sure enough!  It was the pediatrician's office calling to see how Josiah was doing.  I explained.  He fussed off and on during the night.  His fever remained when he awoke at 4am.  We were given a 9:45am appointment.

At 9am, we were out the door.  The big boys were in school allowing Carl & I to take Josiah in alone.  Once inside the room, they asked what he currently weighs.  Well, you know me - I stopped weighing him at home because I was becoming a bit obsessive about the weight issues lol.  So, I gently said "Can we weigh him here?"  Minutes later, Josiah was undressed and laying on the scale.  I knew that he weighed 15 lbs 3oz on Aug 16th.  I watched the scale teeter - I was simply waiting for the end result.  OMG!  17lbs 2oz.  He did it!  He gained 2 lbs in 5 weeks!  I almost started dancing in the hallway.

They examined Josiah.  Luckily, nothing serious.  No ear infections.  No respiratory issues.  It boils down to a cold/viral thing.  Thank goodness!  As we were leaving, we stopped in the hallway.  The MD passes by smiling.  He tells the nurse, "my two failure to thrive kids are both thriving." 

"My two failure to thrive kids are both thriving." 

I'll take it!

31 for 21 Challenge: Day Twenty Four. DS and Autism

Recent years have shown an increase in the number of children who are dually diagnosed: Down Syndrome (DS) AND autism.  In short, these are children who have BOTH.

It is not easy to diagnose autism; There is no blood test, genetic marker, or facial feature to aid in diagnosis.  It is a subjective opinion.  The diagnosis is still harder in children who already have a 'learning disability' such as DS.  There is also not clear agreement on the number of children who are affected by both.

Surveys in the UK and Sweden suggest approximately 5-7% of children with DS have autistic spectrum disorder, or autism.  A recent study in the US suggests 2 in 20 (10%).

Some studies have suggested a family history of autism was present in the families of some of the children dually diagnosed.  Like other children, they are affected by a genetic predisposition in their families.

Some studies suggest that many dually diagnosed children have serious health problems that do not affect all children with DS.  There may be an increased risk for autism for those children with DS who have experienced: infantile spasms, epilepsy, brain injury after complicated heart surgery, severe hearing or visual impairments, and persistent infections.

The diagnosis and treatment of autism is more critical those for DS.  Without early detection and intervention, the lives of children with autism may be much more limited than those with DS. The key area affected developmentally in the DS child is cognitive.  For the autistic child, it is social and emotional. 

Most babies show the least delay in social and emotional development, smiling when talked to at 2 months, smiling spontaneously at 3 months, etc.  Each milestone showing a 1-month delay (on average).  So, the key area to watch for in a child with DS suspected of having a complicated behavior disorder such as autism is in the social/emotional development.

Some key behaviors that may point to the possibility of autism in a child with Down syndrome are:
  1. Extreme Autistic Aloneness - The child does not relate to people normally and seems to prefer to be left alone. The child seems to consider other persons as objects, not people. He will not join in group play with other children. Unlike children with Down syndrome, who are very lovable and huggable, the autistic child does not want to be held.
  2. Anxiously obsessive desire for the preservation of sameness - Any differences in daily routines can cause a large upset.
  3. Lack of eye contact - Autistic persons typically do not make eye contact but will look away or "right through" other people.
  4. Shows repetitive, "Stereotypical" movement, like sitting for long periods of time with an object in his hand and just waving it back and forth looking at it.
Individuals with autism usually exhibit at least half of the traits listed below. These symptoms can range from mild to severe and vary in intensity from symptom to symptom. In addition, the behavior usually occurs across many different situations and is consistently inappropriate for their age.
  • Difficulty in mixing with other children
  • Insistence on sameness; resists changes in routine
  • Inappropriate laughing and giggling
  • No real fear of dangers
  • Little or no eye contact
  • Sustained odd play
  • Apparent insensitivity to pain
  • Echolalia (repeating words or phrases in place of normal language)
  • Prefers to be alone; aloof manner
  • May not want cuddling or act cuddly
  • Spins objects
  • Not responsive to verbal cues; acts as deaf
  • Inappropriate attachment to objects
  • Difficulty in expressing needs; uses gestures or pointing instead of words
  • Noticeable physical overactivity or extreme underactivity
  • Tantrums - displays extreme distress for no apparent reason
  • Unresponsive to normal teaching methods
  • Uneven gross/fine motor skills. (May not want to kick ball but can stack blocks.
Adapted from the original by Professor Rendle-Short, Brisbane Children's Hospital, University of Queensland, Australia.
Diagnosis of Autism in Down Syndrome - DSM-IV Checklist
  1. A total of six (or more) items from (1), (2), and (3), with at least two from (1) and one each from (2) and (3).
    1. Qualitative impairment in social interaction, as manifested by at least two of the following:
      1. Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
        • Not normally seen in Down syndrome, more indicative of autism.
      2. Failure to develop peer relationships appropriate to developmental level.
        • Not normally seen in Down syndrome, more indicative of autism.
      3. A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by lack of showing, bringing, or pointing out objects of interest).
        • Somewhat true in Down syndrome but much more pronounced in autism.
      4. Lack of social or emotional reciprocity.
        • Somewhat true in Down syndrome but much more pronounced in autism.
    2. Qualitative impairments in communication as manifested by at least one of the following:
      1. Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).
        • Not normally seen in Down syndrome.
      2. In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
        • Normally seen in Down syndrome, although not to the extent seen in autism.
      3. Stereotyped and repetitive use of language or idiosyncratic language.
        • Seen somewhat in Down syndrome but not to the extent seen in autism.
      4. Lack of varied, spontaneous make-believe play or social initiative play appropriate to developmental level.
        • Not normally seen in Down syndrome.
    3. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
      1. Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in either in intensity or focus.
        • Not normally seen in Down syndrome.
      2. Apparently inflexible adherence to specific, nonfunctional routines or rituals.
        • Not normally seen in Down syndrome.
      3. Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole body movements).
        • Not normally seen in Down syndrome.
      4. Persistent preoccupation with parts of objects.
        • Not normally seen in Down syndrome.
  2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) Social interaction, (2) Language as used in social communication, or (3) Symbolic or imaginative play.
    • Children with Down syndrome will normally display some deficits in these traits depending on the severity of mental retardation. Since this is not entirely unexpected, it is usually ignored in the records and not so noted. Therefore when autism is diagnosed at a later age and the records or memory is searched for this evidence it is either not found in the official records of the child or it is forgotten about because it was not deemed all that unusual at the time. The diagnostician may then discard the possible diagnosis of autism because the appearance is given (falsely) that these traits were not present prior to 36 months of age. Because of this quirk in the diagnosis, there probably are many persons with Down syndrome with autism but it is not so diagnosed.
  1. The disturbance is not better counted for by Rett's Disorder or Childhood Disintegrative Disorder.

A Helpful site:

31 for 21 Challenge: Day Twenty Three. Sign Language

I learned early on that sign language can be helpful for a baby/child with Down Syndrome.  Here's what I have discovered.

1. Many children with Down Syndrome (DS) have some degree of speech delay.  This makes it difficult for parent and child to communicate - leading to frustration for all.
2. Many babies can pick up signs long before they can speak their first words.  They develop gross motor skills needed for signing before they develop the fine motor skills associated with verbal speech.

3. Sign language is not just for the deaf; It can be helpful with:
  • apraxia
  • autism
  • cerebral palsy
  • communication impairments
  • down syndrome
  • deafness/hearing impairment
  • LLD - language learning disability
  • various learning delays
  • medical non-verbal needs, i.e. tracheotomy
  • varying degrees of mental impairment
4. The development of speech, language, social, emotional, and academic skills is enhanced through the use of sign language.

5. Sign language accelerates the acquisition of speech by stimulating areas of the brain that are associated with speech and language.

6. Signing provides language stimulation and conceptual information that enhances vocabulary development in children.

7. By expanding vocabulary and social opportunities, sign language naturally enhances self esteem.

How to teach sign language to your baby:

1. Start simple (eat, mama, etc)

2. Introduce one sign at a time & use it often.

3. Say the word as you sign it so baby will associate the word with the sign.

4. Make it fun!

A few sites to help get you started:

31 for 21 Challenge: Day Twenty Two. What's in a Nickname?

A repost: What's in a Nickname?

During our recent hospital stay, I was having a conversation with a nurse on the medical unit where Josiah was being treated.  She was a wonderful nurse & Josiah liked her very much, as did I.  We were chuckling over Josiah's hair (it's wispy and tends to stick straight up - much like a mohawk).  She was commenting that a lot of children with Down Syndrome seem to sport a similar hairdo.  During this conversation, she admitted that the staff tends to call these kids "Doodles."  At face value, I thought 'that's kind of cute.'  Perhaps I should have left it at that.

When I returned home, I thought of that nickname and decided to look up the word "doodle."  I know it means to scribble, etc.  However, I wanted to research the word further.  Here's what I found: defines the noun as being "A figure, design, or scribble drawn or written absent-mindedly.  The informal noun means "fool or simpleton" from the German dudeltopf. defines the etymology as this: "The word doodle first appeared in the early 17th century to mean a fool or simpleton." defines the noun as "a minor work."

Perhaps, their nickname for DS kids is innocent.  This nurse readily admitted she knew not why they called the kids 'doodles.'  Perhaps the nickname has been used for decades and the newer/younger nurses have never made the effort to determine it's meaning or origin.

I'm not usually a person that focuses on "political correctness" and the like.  I certainly don't care what nicknames people use.

However, I think this is much different.  Here we have professionals using a nickname to define our children.  If the professionals use such a nickname, doesn't it merely fuel the fires of the ignorant?  90% of all DS pregnancies (that receive an early pre-natal diagnosis) result in abortion.  I firmly believe in a woman's right to choose.  However, if some of these abortions occur due to ignorance and misperception, isn't it possible that the professionals (whether they mean to or not) are contributing to societies fear and misperception of Down Syndrome?  I think it does.

Before the general public can ever change it's negative attitude about Down Syndrome, DS kids, and the parents that have chosen to give them life, I believe that nicknames like "Doodles" need to stop being used.

It's just my thought....

"Being ignorant is not so much a shame, as being unwilling to learn."
- Benjamin Franklin

31 for 21 Challenge: Day Twenty One. DS and Breast Cancer

A repost from October 1, 2012:

October 1st marks the beginning of National Down Syndrome Awareness Month.  It is also Breast Cancer Awareness Month (worldwide).  Therefore, I thought it fitting that I mention a link between the two that I only just learned about this morning.

A study was conducted in Norway and it's results published in 2009.  Here is a synopsis.

Researchers looked into the possibility that hCG (a prevalent pregnancy hormone) provided protection against breast cancer for the child-bearing mother.  Compared to 'normal' pregnancies, 'Down Syndrome pregnancies' yield higher-than-normal hCG levels from late 1st trimester to the middle of the 2nd trimester.  The study hypothesized that women who gave birth to children with Down Syndrome (DS) might have a lower risk of breast cancer than women who gave birth to children without DS.

The study examined all mothers of live-born children in Norway and Sweden from 1967-1973 through 2004.  The study period yielded the following results:

54,063 women developed breast cancer.
5,330 children were born with DS.
139 breast cancer cases were diagnosed in the mothers of DS children.

Adjustments were made for relative risks, risk factors, etc.

In the final analysis, results indicated that mothers of children with DS were at a 23% increased risk of developing breast cancer.  The increased risk was limited, however, to women who had a child with DS after age 30.  It also seemed to be confined to women whose cancer was diagnosed before the age of 50.

The original hypothesis that exposure to elevated levels of hCG may provide maternal protection against breast cancer was NOT supported.

An interesting addition....

In women with Down Syndrome (not the mothers), reported studies suggest that breast cancer is nearly 10x LESS frequent than in the general population.

“The more I read, the more I acquire, the more certain I am that I know nothing.”
- Voltaire