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.

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 :)

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: http://www.nichcy.org/state-organization-search-by-state

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:
http://www.fdhkids.com/developmental_milestones/feeding_development.html

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

breathing.

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

sequences.

•

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 teeth	Lower teeth
Primary teeth
Central incisors	8-13 months	6-10 months
Lateral incisors	8-13 months	10-16 months
Canines (cuspids)	16-23 months	16-23 months
First molars	13-19 months	13-19 months
Second molars	25-33 months	23-31 months
Permanent teeth
Central incisors	7-8 years	6-7 years
Lateral incisors	8-9 years	7-8 years
Canines (cuspids)	11-12 years	9-10 years
First premolars (bicuspids)	10-11 years	10-12 years
Second premolars (bicuspids)	10-12 years	11-12 years
First molars	6-7 years	6-7 years
Second molars	12-13 years	11-13 years
Third molars	17-21 years	17-21 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.

3. The disturbance is not better counted for by Rett's Disorder or Childhood Disintegrative Disorder.

A Helpful site:

http://ds-asd-connection.org/Home.html

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:

http://www.baby-sign-language-academy.com/basic-sign-language-chart.html

http://www.babysignlanguage.com/chart/

http://www.signingsavvy.com/

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:

http://www.thefreedictionary.com/doodle 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.

http://en.wikipedia.org/wiki/Doodle defines the etymology as this: "The word doodle first appeared in the early 17th century to mean a fool or simpleton."

http://www.merriam-webster.com/dictionary/doodle 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

31 for 21 Challenge: Day Twenty. Welcome to Holland Poem

I came across this poem, early on.  How true this is.....


Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

*     *     *
©1987 by Emily Perl Kingsley. All rights reserved.

31 for 21 Challenge: Day Nineteen. Repost. Boppy's, Burps, and Bucket Lists

Josiah had EI on Monday morning.  He loves his time with K.  His stamina seems to be increasing.  He really enjoyed tummy time, lifting his head & turning it side-to-side like a pro.  Sometimes, he uses the boppy pillow; sometimes he lays flat on his tummy.  He does well either way.  We experimented with a new 'gym-type' toy - it was a smashing success!  It has a mirror & folds down for use during tummy time.  Josiah enjoyed looking at that cute baby in the mirror :). 

James was up, and quietly watched K work with Josiah.  I think James wanted to to play but knew it wasn't his turn.  K will be back on Thursday for James.  This week's two playgroups will help pass the time.

Josiah continues to eat his rice cereal once daily.  He seems to enjoy it, most of the time.  I'm working on using different spoons so he'll get use to different textures.  I still imagine his high palette is going to act as an obstacle, at times.  I'm researching this a bit to see what kind of information I can find on feeding, high palette, etc.  It's a work in progress.

Jesse finally felt better & was back to school first thing Monday morning.  He shows no signs of the illness that kept him home last week.  Luckily, no-one else in the house was stricken with the illness.

Today, Jesse's friend came over & we all enjoyed playgroup.  It rained, and was cloudy, all day.  Somehow, that made me feel very tired all day.  The weather doesn't show any real signs of improving for the next several days.  I'm looking forward to sunshine :)

Every day, at various times, I find myself surfing the net.  I recently came across links to a baby who's parents had started a bucket list for her.  After a few clicks, I learned that the little girl's name is Avery & she is 5 months old.  Avery has SMA - Spinal Muscular Atrophy.  The MD's said she won't live beyond her 2nd birthday.  With SMA, eventually, all control over arms is lost.  Second, all control over legs are lost.  Third, all control over breathing is lost.  It's a rare disease and very little is known about it.

Rather than cry now, while she is alive, her parents decided they would cry later - after she is gone.  They decided to create a bucket list for Avery & fill her remaining days with LIFE :)  Avery's Dad started a great blog in which they show Avery fulfilling her life with great adventures <3.

I think back to when we learned that Josiah had a chromosomal abnormality - we didn't yet know which one - there were many it could be.  Trisomy 18 was one possibility.  I read a little bit about it.  I was scared to death.  The 'normal' lifespan for a child with Trisomy 18 is 4-14 days.  Many children with triple 18, never come home from the hospital.  I remember one day praying, "Please Dear God, don't let it be that!"  When we received the final diagnosis of Trisomy 21, I was so very relieved.  I remain relieved.  I am thankful for a beautiful baby that will grow into adulthood.  I am thankful for God's grace. 

Tonight, I pray for Avery's parents.  They can finally stop to cry.

RIP Avery Lynn Canahauti 11/11/11 - 4/30/12 <3

http://averycan.blogspot.com/

http://www.fightsma.org/

31 for 21 Challenge: Day Eighteen. Repost. New Parent's Checklist

This is a great checklist I found for new parents of a child with Down Syndrome.  It was written for parents living in the Pennsylvania area but has been edited, here, for people living in the Massachusetts area.

Newborn checklist

1. Contact the Down Syndrome Clinic at Boston Children's Hospital (857-218-4329) or Massachusetts General Hospital (617-643-8912).

2. Contact NDSS (National Down Syndrome Society) at 1-800-221-4602.

3. Contact MDSC (Massachusetts Down Syndrome Congress) at 1-800-664-MDSC.

4. Contact Early Intervention at 1-800-905-TIES or http://www.massfamilyties.org.  EI is a statewide, integrated, developmental service available to all families of children between birth and three years of age.  EI provides family-centered services that facilitate the developmental progress of children.
5. Apply for Social Security Income (1-800-772-1213) & Mass Health/Medicare (1-888-665-9993 or http://www.masshealth.gov).
         
          SSI is a federal program of the Social Security Administration that provides monthly cash benefits and automatic MassHealth coverage for a child with special medical needs.  Families with low to moderate income and limited resources may be eligible for SSI.  Families whose income or resources exceed the limits of MassHealth Standard may be eligible for Commonhealth.  Commonhealth is a state program that may charge a premium for MassHealth through a sliding fee based on income and family size.

6. Take a copy of the following to your pediatrician:
          1. The Down Syndrome Health care Guidelines (available at http://www.ndss.org)
          2. Contact info for the DS Clinic at BCH or MG
          3. Growth charts for children with Down Syndrome (available at http://www.ndss.org)

3-month checklist

1. Schedule an echocardiogram with a pediatric cardiologist.
          Babies with Down syndrome are sometimes born with heart defects. It is important to identify any cardiac issues as soon as possible so treatment options can be discussed.
          All babies with Down syndrome should have an echocardiogram by 3 months of age.
2. Schedule an appointment with a pediatric audiologist.
          The ability to hear affects the ability to speak, so it is important to have your baby’s hearing checked.
          Your child should receive a newborn hearing screen with an audiologist by 3 months of age (this is in addition to the newborn hearing screen that is routinely done before leaving the hospital). All babies should see an audiologist every 6 months until age 3 and then yearly.
3. Schedule an appointment with a pediatric ophthalmologist.
          All babies with Down syndrome should receive an ophthalmological evaluation by 6 months of age and then yearly.
4. Schedule a thyroid function test.
          Children with Down syndrome are at a higher risk of having abnormal thyroid levels, so it is important that your child’s thyroid levels be checked regularly.
          All babies with Down syndrome should have their thyroid levels tested at birth, at 6 months of age, at 1 year of age, and then yearly.

31 for 21 Challenge: Day Seventeen. Repost. 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:

http://www.baby-sign-language-academy.com/basic-sign-language-chart.html

http://www.babysignlanguage.com/chart/

http://www.signingsavvy.com/

31 for 21 Challenge: Day Sixteen. Repost. DS & 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.

3. The disturbance is not better counted for by Rett's Disorder or Childhood Disintegrative Disorder.

A Helpful site:

http://ds-asd-connection.org/Home.html

31 for 21 Challenge: Day Fifteen. Unending Losses

I woke up this morning to read about another loss in the DS community.  A beautiful little girl, with a beautiful extra chromosome, was born in Idaho in May.  She, like so many, was born with a heart defect.  For four months, she lived a happy, healthy life.  In September, she began going into heart failure.  They performed surgery but she was unable to recover.  She passed away on Saturday, on Josiah's second birthday.

I wonder why some live, and some die.

My heart aches for the families who have said eternal goodbyes.

Today, like always, I am forever thankful for the lives of my children.  I am thankful for great doctors, good friends, and the best family a person could ask for.  I am thankful for this life I have been blessed to call my own.

RIP sweet angels.  Know that you are never forgotten.

 

 

31 for 21 Challenge: Day Fourteen. Repost. Poem by Unknown Author

When you were but a tiny speck 

deep within my womb

something happened to your cells

as life began to bloom

a chromosomal anomaly

is what the doctors say

but you are EXACTLY what I asked for

each night as I would pray

"Dear Lord, send me a happy child

who will not grow up too fast,"

for I love the joys of childhood 

and I wanted that to last.

'Send me a child who sleeps all night

and doesn't often cry,

a little boy with endless love

and a willingness to try."

That little extra chromosome

that number 21

gave me all I ever wanted

YOU - my precious son

- author unknown

31 for 21 Challenge: Day Thirteen. Repost. Brushfield Spots

Brushfield Spots - Have you heard of them?  I hadn't either.  Brushfield spots were first described in 1924, by Thomas Brushfield.  They refer to the little white or yellow spots on the anterior surface of the iris.  They can be arranged in a circle concentric with the pupil, mid periphery, or along the collarette.  They are caused by an aggregation of connective tissue.  Brushfield spots occur in 85% of blue or hazel eyed individuals with Down Syndrome (DS).  Only 17% of brown eyed individuals with DS have Brushfield spots as they are obscured by the anterior concentration of pigment cells.

Here are two pictures illustrating Brushfield spots:

It is important to differentiate these from "Kunkmann Wolffian Bodies" which are present in most children and in 15% of normal, light colored iris.  Kunkmann Wolffian bodies are less distinct, less numerous, and more peripheral than Brushfield spots.

Brushfield spots are a common characteristic of Trisomy 21.  Other ophthalmologic manifestations of Down Syndrome include:

• Refractive errors (near/far sightedness) and squinting - 50% of individuals with DS wear glasses.
• Reduced accomodation (do not focus accurately on targets)
• Cataracs and glaucoma - can occur in infancy
• Astigmatism
• Presbyopia (literally 'old eye') - may occur at a younger age in a person with DS
• Nystagmus - occurs in approximately 15% of people with DS
• Keratoconus - very rare but studies suggest that people with DS are at an increased risk.

Josiah has the Brushfield Spots described above.  I think it gives his eyes a unique and special sparkle.  I wouldn't trade his eyes for the world.  They are beautiful.

"The eyes indicate the antiquity of the soul"

- Ralph Waldo Emerson

31 for 21 Challenge: Day Twelve. Josiah is TWO!!!

Josiah turned two on Saturday.  I can't believe my eyes!  He has become such an incredible little boy.  I read my blog from his first birthday.  I wrote the following:

"It's official!  Josiah is ONE!!!!!

It's hard to believe what a difference a year can make.

Last year, at this time, I think I was running on pure adrenaline (and strength from above).  My oldest brother had just died (in September) and we had put him to rest.  Carl had had a medical emergency and was hospitalized for about two weeks.  One week later, Josiah was born.

The following several months were typical of a family embracing a new baby.  We were no different, just running on exhaustion having survived the chaos of the previous weeks.

In December, the older boys got colds.  Josiah got one - it proved to be the best thing that could have happened.  The 'cold' developed into bronchiolitis (and possible RSV).  He was hospitalized at Children's for one night.  We (he and I) were released New Years Eve day.  Two weeks later, during a follow up echo cardiogram, we would learn that Josiah had numerous holes in his heart resulting in pulmonary hypertension...not good news!  Two weeks later, we were at Children's where Josiah would undergo open heart surgery.

Josiah was released from Children's 4 days after surgery.  Six weeks later, he was fully recovered.  The weight continued to be a battle for several more months.  Now, he is a thriving little boy.

To say we treasure every moment, is a gross understatement.  To say we are thankful doesn't even come close to the gratitude we feel.  We have an amazing family.  We have an amazing life.  We have been blessed a hundred fold.  We know this much is true!"

And so it continues.  We have three beautiful boys.  They are happy and healthy.  Our lives would not be the same without them.

We are truly blessed!!!

"For today and its blessings, I owe the world an attitude of gratitude"

- author unknown

31 for 21 Challenge: Day Eleven. Therapies

We were fortunate to find out about the Down syndrome, while I was still pregnant.  It gave us time to plan, to prepare.  We called the local Down syndrome support agencies.  I reached out to a friend who works for early intervention.  I even called the early intervention agency.

Josiah started receiving EI services at the age of 6 weeks.  It started as two visits per week.  By 18 months, it was four weekly (in home) visits per week.  We also brought Josiah to playgroup.

As he grows older, therapy has become a normal part of each day and week.  We continue EI, but only have two in-home visits per week.  As we've switched some of his therapies to an outside agency, we now enjoy six outside therapies per week.

As I counted this out last week, I chuckled.  Josiah has eight therapy appointments per week (2 in-home, 6 out-of-home) plus he continues to enjoy his weekly playgroup.

Some say to me, "I don't know how you do it."

He's my son.  I wouldn't have it any other way.

31 for 21 Challenge: Day Ten. Tips for Teachers reposted

Tips for Teachers

• Learn as much as possible about Down sydrome. The organizations mentioned in this fact sheet can help you identify techniques and specific strategies to support the student’s learning. We’ve included some additional suggestions below.
• This may seem obvious, but sometimes the appearance of Down syndrome can give the mistaken impression that the child cannot learn. Focus on the individual child and learn firsthand what needs and capabilities he or she has.
• Realize that you can make a big difference in this student’s life! Use the student’s abilities and interests to involve and motivate. Give lots of opportunities for the student to be successful.
• Talk candidly with your student’s parents. They’re experts and can tell you a great deal about their daughter’s or son’s special needs and abilities.
• Work with the student’s parents and other school personnel to develop and implement a special educational plan (IEP) that addresses the individual needs of the student. Share information on a regular basis with parents about how things are going for the student at home and in school.
• If you’re not part of the student’s IEP team, ask for a copy of this important document. The student’s educational goals will be listed there, as will the services and accommodations that he or she is supposed to receive, including in your class.
• Talk to specialists in your school (for example, special educators), as necessary. They can help you identify methods that are effective for teaching a student with disabilities, ways to adapt the curriculum, and how to address the student’s IEP goals in the classroom.
• Be as concrete as possible with the student. Demonstrate what you want to see happen instead of giving only verbal instructions. When you share concrete information verbally, also show a photograph. Give the student practical materials and experiences and the opportunity to touch and examine objects.
• Divide new tasks and large tasks into smaller steps. Demonstrate the steps. Have the student do the steps, one by one. Offer help when necessary.
• Give the student immediate, concrete feedback.

31 for 21 Challenge: Day Nine. Tips for Parents reposted

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 Eight. The Creed for Babies with Down Syndrome

The Creed of Babies with Down Syndrome My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

- unknown author

31 for 21 Challenge: Day Seven. Repost Myths from 10/23/12

Myth: Down syndrome is a rare genetic disorder.

Truth:

Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is born with Down syndrome, approximately 6,000 births per year. Today, there are more than 400,000 people living with Down syndrome living in the United States.

Myth: People with Down syndrome have severe cognitive delays.

Truth:

Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.

Truth:

Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.

Truth:

In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. Visit www.ndss.org to find a Down syndrome group in your area.

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth:

Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.

Truth:

Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

Truth:

People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.

Myth: People with Down syndrome are always happy.

Truth:

People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Resource: NDSS (National Down Syndrome Society)