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)

31 for 21 Challenge: Day Six. Statistics

This is a blog entry from 10/11/2012:


1 in 691 babies, in the U.S., are born with Down Syndrome yearly.

Reportedly, 88% of all cases arise from the mother's chromosome 21.
8% arise from the father's chromosome.
2% arise from mitotic errors after fusion.

Translocation Down Syndrome account for approximately 4-5% of all DS cases.

Nothing 'causes' Down Syndrome - it's no-one's fault.


66-89% of individuals with Down Syndrome have some level of hearing loss.

Chances of developing pneumonia are 62x higher in people with Down Syndrome.

The risk of leukemia is 15-20x higher in individuals with DS.

Seizures occur in 3-13% of people with Down Syndrome.

Approximately 50% of children with DS have congenital heart disease.

100% of people with DS will develop signs of Alzheimer's past the age of 35.



92% of pregnancies with a prenatal diagnosis of DS are terminated.

80% of babies with Down Syndrome are born to women under the age of 35.

Mom's Age	Risk for trisomy 21 (Down syndrome)	Risk for all trisomies
20	1 in 1,667	1 in 526
21	1 in 1,429	1 in 526
22	1 in 1,429	1 in 500
23	1 in 1,429	1 in 500
24	1 in 1,250	1 in 476
25	1 in 1,250	1 in 476
26	1 in 1,176	1 in 476
27	1 in 1,111	1 in 455
28	1 in 1,053	1 in 435
29	1 in 1,000	1 in 417
30	1 in 952	1 in 384
31	1 in 909	1 in 384
32	1 in 769	1 in 323
33	1 in 625	1 in 286
34	1 in 500	1 in 238
35	1 in 385	1 in 192
36	1 in 294	1 in 156
37	1 in 227	1 in 127
38	1 in 175	1 in 102
39	1 in 137	1 in 83
40	1 in 106	1 in 66
41	1 in 82	1 in 53
42	1 in 64	1 in 42
43	1 in 50	1 in 33
44	1 in 38	1 in 26
45	1 in 30	1 in 21
46	1 in 23	1 in 16
47	1 in 18	1 in 13
48	1 in 14	1 in 10
49	1 in 11	1 in 8

There are approximately 6,000 Down Syndrome diagnoses, in the U.S., each year.

There are more than 400,000 people in the U.S. living with Down Syndrome.

Odds of having a child with Down Syndrome increase based on mother's age as shown here:

Frequency of Down Syndrome
Per Maternal Age

Age (years)	Frequency of Fetuses with Down Syndrome to Normal Fetuses at 16 weeks of pregnancy	Frequency of Live Births of Babies with Down Syndrome to Normal Births
15 - 19	----	1 / 1250
20 - 24	----	1 / 1400
25 - 29	----	1 / 1100
30 - 31	----	1 / 900
32	----	1 / 750
33	1 / 420	1 / 625
34	1 / 325	1 / 500
35	1 / 250	1 / 350
36	1 / 200	1 / 275
37	1 / 150	1 / 225
38	1 / 120	1 / 175
39	1 / 100	1 / 140
40	1 / 75	1 / 100
41	1 / 60	1 / 85
42	1 / 45	1 / 65
43	1 / 35	1 / 50
44	1 / 30	1 / 40
45 and older	1 / 20	1 / 25

When we first learned about Josiah having Down Syndrome, these numbers meant more.  We took them more seriously.  The numbers, at times, frightened us.  That isn't true any more.  Josiah is just a little boy.  He's OUR little boy.  He's one of three!  Having children can be risky.  Being 'sure' about their future can be speculative.  We couldn't be happier with the family we have.  We couldn't ask for better children.  If we could go back and do it all over again.....

.....we wouldn't change a thing.

"Give me a firm place to stand, and I will move the earth."

- Archimedes

31 for 21 challenge: Day Five. The End of an Era

The choice to breastfeed Josiah was an easy one.  It had been unsuccessful with the first, but a perfect experience with the second.  I saw no reason it couldn't be the same with Josiah.  I read all the negative reviews about breastfeeding a child with Down syndrome.  "It's rarely successful because of the low muscle tone," "...because of the common failure to thrive, these babies commonly need additional supplementation," and so on.  By all accounts, I had no reason to believe I should try.

Anyone that knows me, however, knows that I will stand up for what I believe in.  I believed it was right for me, and my child.  So, there the dream began.  While still pregnant, I made my intentions known.  I was going to do the impossible (or at least very difficult): I was planning on breastfeeding my baby with Down syndrome.

I knew right away that Josiah had low muscle tone.  Although he understood what to do, and demonstrated some interest, sucking was not easy for him.  It was obvious.  He worked hard for every sip of milk he took.  It was time consuming, exhausting, and tested every ounce of patience I had.

Josiah breastfed exclusively, for about five months.  He weighed 9 pounds at five months.  Our first weighed 15 lbs at the same age.  Our second, weighed 13 lbs.  On 3/12/12, I wrote the following in my blog:

"We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery.  His EKG was great!  Then, they weighed him.  He weighed in at 9lbs 1.3oz.  At best, given that each office has it's own scale, he neither gained nor lost weight.  At worst, he lost 2oz since last Friday (at the pediatrician's office).  I cannot begin to describe the feeling of complete exasperation, frustration, and despair.

Perhaps it seems like a small thing; perhaps it is.  All I know is this: Josiah weighed 7lbs on 10/12/2011.  Today, 3/2/12, he weighed 9lbs 1oz.  He will be five months old, in ten days.  At J1's four-month check up, he weighed 15lbs.  J2, at the same check up, weighed 13lbs.  I know the DS plays a role in the slow weight gain, but this isn't right. 

We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain.  That excuse can no longer be used.  Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate).  Is it the Down Syndrome?  Is it a feeding issue?  Is he not getting enough calories?  Does he simply need more calories than an average child?  Should we start feeding him cereal?  UGH!  The questions race through my tired mind.

The surgeon was very pleased with the outcome of Josiah's surgery.  Josiah's heart "sounds perfect."  His color is good.  "He looks like a different kid."  "He looks more mature in the way he's moving around."  However, "I expected him to come in here having gained a lot of weight so this is disappointing."  (Yeah, tell me about it!)

Up until now, Josiah has been exclusively breastfed.  He doesn't like the bottle; he won't drink from a bottle.  Since surgery, he's been eating every 2-3 hours.  It seems impossible to me that the child has gained no weight but numbers do not lie.  I don't know what to do....that's the feeling.  I hate that feeling.  I'm tired and feel I has so little left to give....

We made our way out of the cardiologists office.  I immediately walked down the hall to the pediatrician's office.  I talked to our favorite nurse M.  I voiced my frustration.  I asked if we should start Josiah on cereal.  I assured her we were doing everything we could to properly nourish our son.  She already knows that we are.  She said she'd call me later.

We did a few errands, picked up Jesse from school, and made our way home.  I was exhausted.  I left a message for our EI worker K.  I know I'll hear from her as soon as she's available.  This afternoon I fed Josiah...off and on....like usual.  I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one.  It's worth a try.

I talked to M from the pedi's office.  The MD said we can start Josiah on cereal.  I needed more than that.  I didn't know what I needed, but that wasn't enough.  I guess I wanted an instant fix....  I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information.  I ended the call for lack of knowing what else to say.  Carl was very supportive of my frustration level.  He called the MD's office back again and spoke with our pediatrician.  The pedi is sympathetic to the situation and understands the frustration level.  He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such.  We'll see the pediatrician next Thursday for another weight check.

I called the lactation specialist KF and heard back from her promptly.  We chatted for some time.  It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight.  She offered some great suggestions.  One by one, I'll try them all.

I talked to K for quite some time after.  She is another fantastic support.  K will put in a referral for OT early next week.  It will be, specifically, for feeding.  I've entrusted that task to her.  We'll see K on Monday and will discuss the details further.

Tomorrow, I'll email A from the DS clinic.  I'll explain what's going on with Josiah.  I'll ask her what I need to do to initiate a consult with one of their nutritionists.  I'll probably hear back from her on Monday.

It's the weekend now....two days, at home, with my wonderful family.  I'm going to try to relax a little.  I'll attempt some of the new suggestions given to me.  Hopefully something will work.  I'm going to try to not let it become all-consuming (although it already feels that way sometimes). 

In the end, everything will work out.  Even the cardiologist said "this is just another little hurdle we have to climb over."  Everything will work out.

Climbing up the down staircase isn't always easy....but it's worth every single step <3"

And so it continued...  I continued to breastfeed.  Ultimately, we added cereal and began supplementing (minimally) with formula.  Little by little, Josiah started gaining weight.  The peanut that once fell 'below the line' on the DS  growth chart, now charts on the 90th percentile.  On the 'normal' growth chart, he didn't even plot on the chart, now charts at around the 50th percentile.

I have to give credit to an unknown friend and support.  By that, I mean a person whom I have never met.  She is my friend KF.  She is a lactation specialist and has been an unwavering support during every frustrating moment.  She returned every call, called me consistently, researched, and supported my every attempt to make it all work.  Without her, I am convinced that my breastfeeding quest with Josiah would have failed.

Instead, Josiah is turning two in 8 days.  He has breastfed this entire time.  I worried about having to wean him, but HE made all the choices.  In the early part of summer, he decreased his nursing to once a day (first thing in the morning).  I could see the end coming near.  In August, he had the croup & we enjoyed what I call 'the last hoorah.'  For four days, while sick, he breastfed 4-5 times per day.  I kept asking him if this was his last hoorah.  Once well, he went back to once per day.  If he was testing me, I proved that he would get anything he needed.  If it was just for comfort, he got that too.

Regardless, yesterday he woke up and decided he was all set.  He didn't nurse.  He had no interest.  He's growing up and I know it.  I didn't push and told him it was ok to be a big boy now.  And so it was.  We went the day without breastfeeding.  Today, like yesterday, he woke with no interest in breastfeeding.  Day two and he's done it all himself.

Though I miss that certain bonding time, I have been fully prepared to see it end.  I will forever remember, and enjoy, the last hoorah that Josiah gave to me in August.  He knew I would miss it.  He, too, knew he was letting go.  And so it is.  We have reached the end of an era.  He's almost two, almost 27 pounds, and has said good-bye to breastfeeding.

“Never give up on what you really want to do. The person with big dreams is more powerful 

than the one with all the facts.” ~ unknown author

31 for 21 challenge. Day Four. There is a Look.

I laugh sometimes when I tell someone (a stranger) "Josiah has Down syndrome," and they respond "I know." I forget that there's 'a look', certain characteristics, that can be easily identified. 

Some of the common ones include: 

• Poor muscle tone;
• Slanting eyes with folds of skin at the inner corners (called epicanthal folds);
• Hyperflexibility (excessive ability to extend the joints);
• Short, broad hands with a single crease across the palm on one or both hands;
• Broad feet with short toes;
• Flat bridge of the nose;
• Short, low-set ears; and
• Short neck and small head;
• Small oral cavity; and/or
• Short, high-pitched cries in infancy.

No child or adult has all of the characteristics.  You might be hard pressed to find two with the exact same characteristics.  There are over 50 common characteristics of Down syndrome.

Josiah definitely has the low muscle tone and folds of skin at the inner corners of the eyes.  He is most definitely hyperflexible.  He does not have the single crease across the palm of his hands, nor does he have a small head. 

Long before I had Josiah, I could spot a child with Down syndrome a mile away. They are so gosh darn cute. There IS a look though. Of course, Josiah is mine. Of course I know he has Down syndrome. But first and foremost, he's my son. I don't see Down syndrome. I simply see my beautiful little boy.