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Monday, December 31, 2012

Who Needs Synagis?

As Fall approached, our pediatrician's office worked steadfastly to get Josiah approved for Synagis shots this year.  Their attempts were shot down.  The MD appealed the decision.  The whole process took until well-into October.  Their effort, futile.  The insurance company said that Josiah doesn't need them; he's not at-risk.  Ok.....

As Christmas day came to an end, Josiah's cough became more pronounced.  The three year old had had a cough for almost a month.  They had both been diagnosed with an ear infection; both had resisted amoxycillin.  They were both on their second round of antibiotics - a Saturday morning visit to the pediatrician, three days before Christmas, had proven that the first round was unsuccessful.

Late Tuesday night, I ventured into the attic searching for the two humidifiers I knew were stored there.  I quickly found them and dragged them out of their hidden corners.  Downstairs, I determined that only one was working.  So, I had to choose - which kid gets the working one?  Well, I rationalized, the three year old is getting better, and can take zarbees cough medicine (pure honey).  So, Josiah won!  The humidifier was set up in hopes that his cough would settle down. 

During the next 48 hours, we listened to Josiah become more and more congested.  Friday morning, I was well aware that the Holiday weekend loomed in front of us.  We called the pediatrician and got a 2pm appointment.  We figured, let's have the two youngest checked.  As usual, we were there on time and ushered right into a room.  The MD came in and made an immediate remark that Josiah didn't sound well.

The three year old was checked first and given a big thumbs up.  His ear infection is on it's way out.  Then, it was Josiah's turn.  Lungs listened to - "they sound wet."  That's not good.  Ears checked - "that one looks awful!"  Ugh!  T-shirt pulled up - ribs retracting when breathing.  Uh-oh!  Did I mention that the Holiday weekend was looming?  "He probably has RSV."  "If it's not RSV, it's pneumonia."  End result - head to Children's.

The MD called ahead so they would be expecting us.  We hoped to drop the older boys off at their grandparents house - we were told not to waste the time.  Three boys packed into the car, quick stop at the gas station, and we hit the road for Children's Hospital.  Friday at 3pm, on a Holiday weekend, doesn't bode well for traveling (especially when there's a sense of urgency).  We made it to the e.r. around 4:15pm.  C dropped Josiah and I off, and headed home with the older boys.

E.R. visits always take a while.  I was fairly certain we'd be staying overnight.  It was only one year ago, on New Year's Eve weekend, we had made this same trip.  Josiah had a suspected case of RSV and we were sent from pedi to e.r.  Last year, Josiah was hospitalized.  I anticipated the same.

I immediately stated that I wanted Josiah tested for RSV (they don't usually formally test because it doesn't change the actual treatment).  The MD's were great and obliged.  At 9pm, the MD entered the room, "Did you hear?"  I replied, "Hear what?"  MD, "You nailed it from the beginning.  He has RSV."  I asked, "Did you document that?"  She smiled and simply said "Yes."

Luckily, they didn't feel that Josiah required hospitalization this time around.  Josiah was discharged; C came back for us and we headed home at about 10pm.

He had a fever late that night; it responded well to Tylenol.  His cough and congestion got worse; both now seem to be improving.  It's New Year's Eve and we're home.  We are thankful for the blessings in our life.

It upsets me that a faceless individual decided that our son isn't "at risk."  Our son doesn't need the Synagis shots (which protect at-risk kids from RSV).  I'm upset that our son has to go through the congestion, coughing, and fevers.  I'm upset that he's been housebound due to my fear of him getting worse.  I'm upset that he's sick.  It's because of a faceless person and someone's bottom-line (ie money).  So sad.  After all, who needs synagis???

Monday, December 24, 2012

Zero to Sixty Faster Than the Speed of Light

Tonight was certainly not one of my prouder moments.  It involved an accumulation of stuff followed by a three year old boy.

I'd like to know how a child who is knee-high to a a grasshopper, can invoke such mommy- dearest-type reactions (perhaps that's a slight exaggeration).

The middle boy (age 3) had his "well visit" two weeks ago.  All was perfect.  24 hours later, at my urging, C took him to the e.r.  Diagnosis: middle ear infection.  Treatment: Amoxicillin.  No problem.  Little one loves the bubblegum flavor so, for the next ten days, he gladly took his medicine.  Now, albeit, an occasional dose was missed (school, fell asleep, Mom/Dad forgot, etc) so, fast forward to day ten, while I was pouring his last dose he pipes up "Mom, my ear hurts."  Great!  Last dose consumed.  Pediatrician office the next day (yesterday).  Yup!  Ear infection still there.  Same ear.  "It's early in the season to see resistant strains," says the N.P.  Well, that's encouraging!

Off we went with a new script - new medication.  Let's try this again.  Not missing a dose was stressed.  To make it easier, the new medication is to be taken once daily.  Perfect!  Last night, 5pm, time to take medicine.  Little one takes one sip (after questioning why this medication doesn't look like the last one - it's white in color, not pink).  He took one sip and announced he hated it.  End result - me laying him over my lap & squirting it in his mouth with a syringe.  That's always a pleasant thing to have to do.

This afternoon, C calls pharmacy.  We pay to have the medication flavored with 'bubble gum' flavoring.  He brings it home.  I pour it.  Little one sees the same white color and questions it.  Trusting me, he takes one sip.  He promptly announces he hates it.  End result - me laying him over my lap & squirting it in his mouth with a syringe.  New twist - HE SPIT IT OUT.  So much for not missing a dose.  I was FIT TO BE TIED.  Mad?  Yes!  Exasperated?  Even more so!!!  I went from zero to sixty faster than the speed of light.  I yelled and shouted; I was bordering on 'over the edge.'  I had to walk outside to cool off.

I'm already dreading tomorrow's dose.

Sunday, December 23, 2012

Thankful Project 2012

I am hopelessly addicted to Facebook (FB).  That is a fact.  As such, I occasionally participate in the 'fad' on FB.  In November, it was the 'Thankful Project' - the gist is this: Every day, you post something that you are grateful for.  Here was my list:


Thankful Post #1: I am thankful to be married to my best friend & love of my life.

Thankful Post #2: I'm extremely grateful for my beautiful sister-in-law who offered to babysit our crazy boys so Carl & I could enjoy this date night :)

Thankful Post #3: I am thankful, humbled, grateful, and blessed to have the BEST parents in the world. Words cannot express how honored I am to be their daughter.

Thankful Post #4: I am thankful for my beautiful, healthy, children.

Thankful Post #5: I am thankful for the little things this am....warm house, clean clothes, food in the cabinets, hot shower...very blessed indeed.

Thankful Post #6: I am grateful for this country I call home. I am thankful to be allowed to make my own choices, love whom I choose, raise my children as I see fit, and let my voice be heard.

Thankful Post #7: Forever grateful for those quiet moments after the kids are asleep & before I go to bed.

Thankful Post #8: I am thankful for our special movie day with our five year old, thanks to a power outage at the elementary school :)

Thankful Post #9: I am forever grateful for the awesome work that early intervention has done. The three year old's speech has improved remarkably and Josiah is right on the verge of sitting & crawling.

Thankful Post #10: I am grateful for a long weekend with my kids, parents who 'borrowed' them for a few hours, fun xmas shopping with hubby, and a scheduled get-together with close friends.

Thankful Post #11: I am grateful for great friends, life-long and new.

Thankful Post #12: I am thankful for this country and all who serve to protect it.

Thankful Post #13: I am grateful for sleeping children.

Thankful Post #14: I am thankful for the courage to see a dentist (after postponing it for yrs lol) and for getting through the appt with minimum anxiety :)

Thankful Post #15: I am grateful for kids in school, leaf blowers, naps, halo w my sweetheart, and a fun-filled weekend rapidly approaching.

Thankful Post #16: I am grateful for family, friends, fun, frolicking, and Fridays :-D

Thankful Post #17: I am grateful for a mellow afternoon at home. The Wizard was right; there's no place like home.

Thankful Post #18: I am grateful for family get-togethers.

Thankful Post #19: I am thankful that the older boys have school today - it gives me time to get a few things done :)

Thankful Post #20: I am grateful for a peaceful day leading up to Thanksgiving.

Thankful Post #21: I am thankful for a dear friend who took the oldest for the day so we could get ready for Thanksgiving.

Thankful Post #22: I am grateful for my husband who cooked a mighty fine bird on the Weber :). I am thankful for family who made the day a success. Awesome food & perfect company......doesn't get any better than this ♥. Happy Thanksgiving :)

Thankful Post #23: I am grateful for a weekend at home & no interest in black Friday. 72 hours with my boys - no wasting time, gas, or money.

Thankful Post #24: I am grateful for this weekend at home with my boys.

Thankful Post #25: I am grateful for early intervention. Our kids have thrived with their support.

Thankful Post #26: I am thankful to always have what is needed.

Thankful Post #27: I am grateful for dreams. My Grammie visited me in mine. I love and miss you dearly.

Thankful Post #28: I am thankful for great nights like this....decorated the xmas tree with my boys & watched the Grinch (well, kind of lol).

Thankful Post #29: Tonight, I was thankful to have the opportunity to hear my beautiful friend sing. It was a wonderful evening to kick off the xmas season. I'm also grateful that our 5 yr old doesn't usually behave the way he did tonight...

Thankful Post #30: I am grateful for the Christmas season - bring it on!!!!! :) ♥


It's all about family.  It's the kisses before bedtime.  It's solitude.  It's laughter.  It's togetherness.  It's the little things in life.  May we never forget what matters....

Sunday, November 11, 2012

The One-Year Check Up

October was a busy month full of birthdays (including Josiah's), Halloween parties, and outings.  This was in addition to school (K and preschool) and Early Intervention.  As is the norm, Josiah's 'one year old' distinction earned him his one-year check up at the pediatrician's office.

A few days after his birthday, we headed out in the a.m. to take him to the MD.  We arrived a few minutes early.  I felt confident that he had continued to gain weight.  I was hoping that it would be 'enough.'  Luckily for me, it's the first thing they do - weigh the child.  It was 'just what I needed.'  He weighed in at 18lbs 9oz.  He measured a long 29.5 inches.  To make matters more exciting, he plotted on the chart - the 'typical' chart.  They, apparently, don't like to use the Down Syndrome growth chart any longer, so the 'typical' chart it is.  He plotted on the chart, for weight, for the very first time ever!!!  He's in the 3rd percentile for weight; He's in the 36th percentile for height.  Our boy made the charts!!!  :) 

Of course, all the measurements were obtained by the nurse.  When the doctor came in, I was quick to share the numbers.  His smile told it all!  He said, "Josiah's just the size of a small one year old."  "My boys weren't much bigger than he his; they weren't 20 lbs at their first birthday."  Finally, I can breathe a sigh of relief.  I can finally stop being so worried about this nonsense :)

Josiah received his flu booster shot (two are always required the first year).  He received his other vaccinations and handled them like a trooper.  Before we knew it, it was time to leave.  Next visit: 15 months.

So, here we are.  One year old and all is well :)  Now, it's just time to follow up on hearing tests, etc...



Wednesday, October 31, 2012

31 for 21 Blog Challenge: POST THIRTY ONE: A Great List of Resources

External Resources

  • Dads Appreciating Down Syndrome (D.A.D.S.) National
    www.dadsnational.org888-989-9255
    D.A.D.S. is a committee or community group (within a local Down syndrome support organization) of fathers of children who happen to have Down syndrome. D.A.D.S holds community meetings which often feature expert speakers and always involve sharing intimate stories and experiences unique to fathers. 
  • Down Syndrome Radio
    http://downrightawesome.com
    A podcast on rasing children with Down syndrome from a dad's perspective
  • DS-Health
    http://www.ds-health.com/lists.htm
    A compilation of Down syndrome email lists, newsgroups and bulletin boards compiled by Dr. Len Leshin.
  • Family Village Online
    www.familyvillage.wisc.eduA global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities.
  • Little Hearts
    www.littlehearts.org866-435-4673
    Provides support, education, resources, networking and hope to families affected by congenital heart defects
  • Mended Little Hearts
    www.mendedhearts.org888-432-7899
    A support program for parents of children with heart defects, offering resources and a support network
  • MUMS: National Parent to Parent Network
    www.netnet.net/mumsMatches parents of children with disabilities (often rare) with other parents whose children have the same or similar condition
  • National Family Caregivers Association
    www.thefamilycaregiver.org877-336-5333
    A caregiving advocacy organization whose website features links to information and resources, a volunteer network, and supporting messages and philosophies
  • National Fathers Network
    www.fathersnetwork.orgProvides support and resources for fathers and families of children with disabilities
  • National Organization of Mothers of Twins Clubs
    www.nomotc.orgOffers online support for mothers of multiples 
  • National Respite Locator Service
    http://archrespite.org/respitelocator
    800-473-1727
    Helps parents, family caregivers, and professionals find respite services in their state and local area to match their specific needs
  • Parent Advocacy Coalition for Educational Rights (PACER Center)
    www.pacer.org888-248-0822
    Parents can find publications, workshops, and other resources to help make decisions for their children with disabilities
  • Parent to Parent USA
    www.p2pusa.orgProvide emotional and informational support to families of children who have special needs by matching parents seeking support with a trained “Support Parent”
  • Sibling Support Project
    www.siblingsupport.orgA national effort dedicated to concerns of brothers and sisters of individuals with special needs
  • Specialized Training of Military Parents (STOMP)
    www.stompproject.org800-572-7368
    Established to assist military families who have a child with a disability
  • Through the Looking Glass
    www.lookingglass.orgA nationally recognized center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue
  • ¡Uno Mas!
    www.unomas21.comAn online Down syndrome support group that offers support, advice, and discussion groups to parent and expectant parents of children with Down syndrome
BOOKS FOR PARENTS AND FAMILIES
  • Babies with Down Syndrome: A New Parents' Guide. Third Edition. Skallerup, Susan J. (Ed.) Bethesda, MD: Woodbine House. (2008)
  • Bloom: Finding Beauty in the Unexpected - A Memoir.  Hampton, Kelle. New York, NY: Harper Collins. (2012)
  • Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier. Hale, N. Bethesda, MD: Woodbine House. (2011)
  • Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. Soper, K. (Ed.) Bethesda, MD: Woodbine House. (2007)
  • Gifts 2: How Children with Down Syndrome Enrich the World. Soper, K. (Ed.) Bethesda, MD: Woodbine House. (2009)
  • Married with Special-Needs Children: A Couples' Guide to Keeping Connected. Marshak, L. and Pollack Presant, F. Bethesda, MD: Woodbine House. (2007)
  • More Than a Mom: Living a Full and Balanced Life When Your Child Has Special Needs. Baskin, A. and Fawcett, H. Bethesda, MD: Woodbine House. (2007)
  • A Parent's Guide to Down Syndrome: Toward a Brighter Future. Second Edition. Pueschel, S. M. Baltimore, MD: Brookes Publishing. (2002)
  • Uncommon Fathers: Reflections on Raising a Child with a Disability. Meyer, D. (Ed.) Bethesda, MD: Woodbine House. (1995)
BOOKS FOR AND ABOUT SIBLINGS
  • The Best Worst Brother. Stuve-Bodeen S. Bethesda, MD: Woodbine House. (2005)
  • Brothers and Sisters: A Special Part of Exceptional Families. Gallagher, P.A., Powell, T.H. and Rhodes, C.A. Third Edition. Baltimore, MD: Brookes Publishing. (2006) 
  • Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. Levine, S. and Skotko, B. Bethesda, MD: Woodbine House. (2009)
  • Living with a Brother or Sister with Special Needs: A Book for Sibs. Second Edition. Meyer, D. and Vadasy, P. Seattle, WA. University of Washington Press. (2000)
  • The Sibling Slam Book: What It's Really Like to Have a Brother or Sister with Special Needs. Meyer, D. (Ed.) Bethesda, MD: Woodbine House. (2004)
  • Special Siblings Growing Up with Someone with a Disability. Hughes, M. Revised Edition. Baltimore, MD: Brookes Publishing. (2002)
  • Supporting Siblings and Their Families During Intensive Baby Care. Rector, L. Baltimore, MD: Brookes Publishing. (2007)
  • Thicker Than Water: Essays by Adult Siblings of People with Disabilities. Meyer, D. (Ed.) Bethesda, MD: Woodbine House. (2009)
  • Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs. Meyer, D. (Ed.) Bethesda, MD: Woodbine House. (1997)
  • We’ll Paint the Octopus Red. Stuve-Bodeen, S. and DeVito, P.  Bethesda, MD: Woodbine House. (1998)

31 for 21 Blog Challenge: POST THIRTY: What Not To Say...

Things not to say:

“I’m sorry” or “How sad.”
Any statement that expresses pity is likely to offend. Instead of pity, offer congratulations.

“Down’s baby are really happy.”
This phrase is a double no-no. First off, don’t use phrases like “Down’s baby” or “Down’s kids”. Although it may feel a little awkward at first, it is very important that you always put the person first and the diagnosis second. Instead use the phrases “baby with Down syndrome” or “person with Down Syndrome."

The statement above also perpetuates a stereotype about people with Down syndrome. People with Down syndrome experience a full range of emotions like everybody else, and perpetuating stereotypes helps no one and may offend new parents.

“This baby is a blessing in disguise” or “You are a saint.”
The new parents may not be feeling particularly blessed or happy with God at the moment, and may not appreciate hearing that they were singled out. They also are likely to be experiencing some non-saint like emotions and many new parents just won’t find these sentiments helpful.

“I couldn’t do it” or “You are a better person than me.”
This situation isn’t about you, and the new parents shouldn’t be put in the position of having to reassure you! Also, statements such as these imply that the parents need special traits, that not everyone has, to raise a child with Down syndrome. It is much better to express faith in their abilities by saying things such as “I know that you can do this” rather than implying extra human abilities are needed.

31 for 21 Blog Challenge: POST TWENTY NINE: Racial Divide in DS Deaths

Racial Divide Seen in Down Syndrome Deaths



A U.S. government study has found a sharp racial divide in life expectancy for people with Down syndrome, with whites living twice as long as blacks.

Whites with Down syndrome in the United States had a median death age of 50 in 1997, the Centers for Disease Control and Prevention said today. The median age was 25 for blacks, and just 11 for people of other races.

"I don't think we were surprised there was a racial disparity. What did surprise us is the magnitude of this difference," said Dr. J.M. Friedman, a genetics professor at the University of British Columbia who led the study.

Down syndrome is a chromosomal abnormality that causes mental retardation. Children with Down syndrome run a higher risk of heart defects, visual or hearing impairment and other health problems.

Down Does Not Discriminate
Poorer health care among blacks may contribute to the racial gap, Friedman said.
The statistics are a dramatic improvement from the 1960s, when Down syndrome victims of all races had a median age of death of 2 or younger, the CDC said.

Friedman explained that 30 years ago it was considered inappropriate to perform surgery on a Down infant. Surgery has become much more common. Health officials also credit antibiotics developed since the 1960s.

The CDC study analyzed 34,000 Down-related deaths in the United States between 1968 and 1997. The 30-year study showed a gradual increase in median death age for whites with Down — from 2 years in 1968 to 50 in 1997. For blacks, Down remained mostly a childhood killer until the mid-1990s.

The study appeared to show that Down does not discriminate in whom it strikes. About 87 percent of the deaths were whites and about 12 percent blacks — roughly in line with national demographics for the 30 years.

The National Down Syndrome Society said the study indicates a "serious disparity that really needs to be addressed."

"We always acted on the assumption that there was some kind of socio-economic kind of disparity," said Jennifer Schell Podoll, a spokeswoman. "But we're very surprised reading that survey to find out the racial disparity was so stark."

31 for 21 Blog Challenge: POST TWENTY EIGHT: Tips for Teachers

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 Blog Challenge: POST TWENTY SEVEN: 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 Blog Challenge: POST TWENTY SIX: For High School Students with Down Syndrome

For High School Students with Down Syndrome

While the student is still in secondary school, parents, the IEP team, and the student himself (or herself!) will need to plan for the future and the student’s life as an adult. This involves considering, for example, issues such as employment (with or without supports), independent living and self-care skills, the possibility of higher education or vocational training, and how to connect with adult service systems. Under IDEA, the process of planning for transition to adulthood should begin no later than the student’s 16th birthday. (7) For adolescents with Down syndrome, it’s usually important to begin earlier than that.
Adult life for individuals with Down syndrome has changed noticeably from just two decades ago. Opportunities to live and work independently in the community have greatly expanded for those with Down syndrome. This owes much to the more inclusive and comprehensive education IDEA promotes and to improved public attitudes towards disability. Today, there’s a nationwide network of independent living centers, as well as apartments that are group-shared and supervised for those who need this level of support. Training, education, and assistance are also available  to eligible adults with Down syndrome through service systems such as Vocational Rehabilitation and Social Security.  Adult life holds many opportunities for those with Down syndrome, so it’s important to plan ahead with optimism and vigor.

31 for 21 Blog Challenge: POST TWENTY FIVE: Educating Children with Down Syndrome

Educating Children with Down Syndrome

When a child with Down syndrome reaches school age (after the 3rd birthday), the public school system becomes responsible for educating the child and for addressing the child’s unique needs related to his or her disability. Parents and school personnel will work together to develop what is known as an Individualized Education Program (IEP) for the child. The IEP is similar to an IFSP in that it describes the child’s unique needs and the services that will be provided to meet those needs. The IEP will include annual goals for learning and much more. NICHCY offers a great deal of information about the process for developing an IEP—especially our parent’s guide called Developing Your Child’s IEP—all of which can help parents learn how to participate effectively in their child’s education.
Much information is also available for teachers to learn more about effective teaching practices for children with Down syndrome. It’s important for teachers to take into consideration the degree of intellectual disability involved, the child’s talents and interests, and the supports and services he or she needs, as specified in the IEP. Generally speaking, teachers will find it more effective to emphasize concrete concepts with a student who has Down syndrome, instead of abstract ideas. Teaching skills in a step-by-step fashion with frequent reinforcement and consistent feedback has proven successful.

Today, the majority of children with Down syndrome are educated in the regular classroom, alongside their peers without disabilities. This is in keeping with the inclusion movement of the last decade and the requirements of IDEA, which states that each school system must ensure that:
Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.

Equally clear is this requirement of IDEA:
A child with a disability [may not be] removed from education in age-appropriate regular classrooms solely because of needed modifications in the general education curriculum.

31 for 21 Blog Challenge: POST TWENTY FOUR: Health Considerations

Health Considerations

Besides having a distinct physical appearance, children with Down syndrome frequently have specific health-related problems. A lowered resistance to infection makes these children more prone to respiratory problems. Visual problems such as crossed eyes and far- or nearsightedness are common in individuals with Down syndrome, as are mild to moderate hearing loss and speech difficulty.  Approximately one third of babies born with Down syndrome have heart defects, most of which are now successfully correctable. Some individuals are born with gastrointestinal tract problems that can be surgically corrected.
Some people with Down syndrome also may have a condition known as Atlantoaxial Instability, a misalignment of the top two vertebrae of the neck. This condition makes these individuals more prone to injury if they participate in activities which overextend or flex the neck. Parents are urged to have their child examined by a physician to determine whether or not their child should be restricted from sports and activities which place stress on the neck. Although this misalignment is a potentially serious condition, proper diagnosis can help prevent serious injury.
Children with Down syndrome may have a tendency to become obese as they grow older. Besides having negative social implications, this weight gain threatens these individuals’ health and longevity. A supervised diet and exercise program may help reduce this problem.

31 for 21 Blog Challenge: POST TWENTY THREE: Help for School-Age Children

Help for School-Aged Children

Just as IDEA requires that early intervention be made available to babies and toddlers with disabilities, it requires that special education and related services be made available free of charge to every eligible child with a disability, including preschoolers (ages 3-21). These services are specially designed to address the child’s individual needs associated with the disability—in this case, Down syndrome.
There is a lot to know about the special education process, much of which you can learn at NICHCY, which offers a wide range of publications on the topic. To begin, however, and access special education services for a school-aged child in your area, get in touch with your local public school system. Calling the elementary school in your neighborhood is an excellent place to start.

31 for 21 Blog Challenge: POST TWENTY TWO: 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 Blog Challenge: POST TWENTY ONE: Characteristics

Characteristics of Down Syndrome

There are over 50 clinical signs of Down syndrome, but it is rare to find all or even most of them in one person. Every child with Down syndrome is different.  Some common characteristics 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.
Individuals with Down syndrome are usually smaller than their nondisabled peers, and their physical as well as intellectual development is slower.

Tuesday, October 23, 2012

31 for 21 Blog Challenge: DAY TWENTY: Myths

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 Blog Challenge: DAY NINETEEN: A Poem

This poem really touched my heart <3


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 Blog Challenge: DAY EIGHTEEN: 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 Blog Challenge: DAY SEVENTEEN: Flexibility

It is clear to me that my recent cold has consumed the better part of a week.  I opened up the blog to write and saw that day sixteen was the last entry.  After briefly assuming something had gone radically wrong, erasing numerous entries, I had to take a step back and realize that I simply lost track of time.  The site was not hacked.  Nobody erased my entries.  I simply got side tracked.  I shall now attempt to catch up....

FACT or MYTH: Children with Down Syndrome are extremely flexible!!!

This is true!  Children with that extra chromosome have increased flexibility in their joints, called "hyper-flexibility."  Research indicates that the ligaments that hold the bones together in the joints of children with Down Syndrome are longer than usual.  It is very noticeable in a child with DS's hips, feet, and shoulders.  As children with DS grow older, and gains strength and motor control in specific muscle groups, the risks of joint injury lessens.

Wednesday, October 17, 2012

31 for 21 Blog Challenge: DAY SIXTEEN: Do We Decide the Outcome?

I read a story recently of a young lady with Mosaic Down Syndrome.  She had battled leukemia and, now at the age of 9, is in remission.  Here's the thing....until she was diagnosed with leukemia, she didn't know that she was rocking an extra chromosome.  That makes me wonder what role parental/provider/professional expectation plays....  It must make a difference.

If this young lady was thought to be 'normal,' she was treated as such.  There were obviously no overt signs of delay or red flags would have been raised much sooner.  It wasn't until a medical problem confirmed an extra chromosome, that anyone knew otherwise.

I have friends that have children with DS.  Some kids are coddled, as if still a baby.  Some, not so much.  I wonder what ultimate role that plays in outcome. 

We expect Josiah to be not unlike our other boys.  Outside of lower muscle tone, he is just like them!  I know he's still young so we don't yet know his capabilities.  However, we never question his capabilities.  We know he can do anything he wants, anything he sets his mind to.

A provider recently said to us "well, kids with developmental disabilities can get this until they are 7."  She was referring to a service we didn't want.  More strikingly, she referred to Josiah as a kid with developmental disabilities.  He has Down Syndrome.  I don't see him as a kid with developmental disabilities.  I think how things are phrased are important. 

This all may sound very petty.  It may sound as though I'm arguing semantics.  It's just my opinion....


"Labels are for filing.  Labels are for clothing.  Labels are not for people."
- Martina Navratilova

31 for 21 Blog Challenge: DAY FIFTEEN: New Measurements

Ok....I'm a couple of days behind....I have a cold that is giving me a run for my money lol.

Monday morning, we had an appointment.  Josiah was weighed (with diaper and lightweight clothes on) - he weighed 18lbs 9oz.  Wow!  I imagine he must weigh close to 18lbs with nothing on.  That would mean an almost 1-lb weight gain since September 25th.  That's great!  He measured 28.5 inches long.  He is actually plotting on the growth charts now!!!

In early writings, I know I would talk about utilizing Growth charts for children with Down Syndrome.  Apparently, the powers that be no longer want these charts used.  In their opinions, it increases the risk that children's malnutrition won't be caught as quickly.  So, now they say to use the 'normal' charts.

K (child specialist from EI) also came out on Monday.  Josiah did very well.  The vest continues to provide him with a little extra support.  However, he seems to be demonstrating little need for it.  Rolling continues to be his favorite pastime.  He is also now showing off his ability to get up on all fours (crawling position).  He has rocked, in that position, a few times but hasn't actually crawled yet.

Big things are coming for Josiah :)....


"Success is not final, failure is not fatal: it is the courage to continue that counts."
- Winston Churchill

Monday, October 15, 2012

31 for 21 Blog Challenge: DAY FOURTEEN: Birthday Celebration

Sunday, we were up early.  It seems like we never allow enough time to get ready....though it is rather unbelievable.  We were up at 8am - 2 kids bathed the night before.  We didn't need to leave until 11:45 - no problem, right?  Well, a few minutes after 12 noon, we were departing.  After a few pre-planned errands, we were off to a family member's house.  Close to 1:30, we arrived; we were only about 1/2 hour late.

The day was spent with family.  It was such a nice and relaxing day.  Four birthdays were to be celebrated.  Josiah just turned one - ready to embark on a lifetime of adventures.  My aunt just turned 84 - the celebration of a long, healthy, life - closer to the end, than the beginning.  My nephew turned 20 - he is no longer that little boy or teenager but rather a handsome, young man destined to a life of accomplishments.  My birthday falls at the end of the month....I couldn't ask for a better life. 

We opted to allow Josiah to do a face plant in a piece of cake (with ice cream, of course).  Somehow, I think he was as leery as we were.  Although he grabbed the plate with great gusto, he was cautious with every movement.  He ultimately decided not to plant his face in his food.  He did allow his daddy to feed him a few small pieces of cake, as well as a few tiny spoonfuls of ice cream.  Honestly, I don't think he was impressed.

I was impressed, later at home, to see the possible effect the cake/ice cream had on him.  Luckily, we didn't have exploding diapers or a sick little boy.  What we did have was a maniac.  Instead of nursing and falling asleep in my arms at 8pm, he was full of himself.  He was energetic, giggly, full of smiles and laughter.  He was a crazy little man.  Just before midnight, the sugar had worn off; he fell asleep. 

Carl and I finally retired at midnight only to be awakened by the 2 yr old at 2:18am; He thought it was a good time to get up and play.  He was disappointed to learn that we did not agree with him.  Thankfully, he agreed (begrudgingly) to go back to sleep.  We tried, and we dozed, but I don't think we got restful sleep after that.  The alarm went off at 6:15.  It was Monday morning; it had come much too quickly....

Sunday, October 14, 2012

31 for 21 Blog Challenge: DAY THIRTEEN: Birthday Weekend

I spent the first few hours Saturday teaching at the school of performing arts.  It was the first day of the new program - a musical theater program for children with Down Syndrome.  There are only a few students right now, but I know this will grow in time.  Class was fun.  The kids were great!!!!  This is going to be a blast.

I was home by early afternoon, and we spend a Saturday at home.  I keep marveling at Josiah - I am in awe of him; I am in awe of my three little guys :)

Tomorrow (Sunday), we are having a big family get-together for the "October birthdays."  In our family, there are four.  Josiah, my nephew, my aunt (who shares Josiah's birthday, 83 yrs apart), and me. 

Here's tonight's question....should I let Josiah do a face plant in a cupcake?

We allowed both our older boys to have their first taste of cake/frosting on their first birthday.  However, they had both had table food (even if minimal) by the time their first birthday arrived.  Josiah has not had the same experience.  He does very well with food, but it's been (primarily) baby food.  AND, he is still breastfeeding.  The older boys were walking at 11 months; Josiah is still working on being able to sit.  So.....what to do???

Regardless, I'm looking forward to the get together.  We're having another party later in the month.  For both, Josiah will wear his "birthday boy" outfit (a very cute one-piece outfit that James wore on his 1st birthday).

Looking forward, we have C visiting this week (occupational therapy) - she just asked for permission to complete a four-visit infant massage therapy with Josiah - I said yes, of course.  That will begin soon.

Beyond that....it's school for the big boys, EI (early intervention) for the younger ones, first teacher conference, fundraiser, and a trip to a Pumpkin patch with all three kids.  It'll be a fun week :)

It is late and I have a lot to do before the party.  I'm off to bed.  Sleep well my friends.


"Your birthday is a special time to celebrate the gift of 'you' to the world"
- unknown author

Saturday, October 13, 2012

31 for 21 Blog Challenge: DAY TWELVE: 1st Birthday

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!


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

Thursday, October 11, 2012

31 for 21 Blog Challenge: DAY ELEVEN: PT Strides

Josiah had physical therapy this morning.  As usual (for a Thursday), we were up at 6:30, changed, dressed, fed, and ready at 8.  D arrived at 7:59 - as prompt as usual.  She was immediately met with smiles, coos, and giggles.

Josiah has been doing well.  Despite my best intention of allowing him to utilize his new vest, I must say it fell by the wayside.  The vest still sat where I had laid it last week.  The hip helpers remained there too.  After my confession, and brief apology, D and Josiah were on to their session. 

The vest was on little man, almost immediately.  My goodness, it does make a difference!!!  Josiah enjoyed sitting today.  The support has become less and less.  It is now minimal.  At times, Josiah was sitting without any support.  Of course, D was ready to catch him when he tipped over (which inevitably happens every time).

We brought the music block out today.  It's quite tall which proved helpful.  While sitting, it forced Josiah to bring his arms up quite high to reach the top.  Then, D tried standing.  With a bit of a jackknife shape, Josiah stood hanging on to the block.  How dapper he looked sporting his vest.  He demonstrating his weight-bearing abilities like a pro.  He even maneuvered toys while doing so.

He was happy to show D how he gets into the 'all four' position and rocks (often using his head for stabilization).  I don't know if he realizes how close to crawling he actually is....

All the while, he is babbling up a storm.  Just in the past three days, he's added 'lala' and 'dada' to his verbal repertoire.  He talks in conversation.  He talks to get attention.  He talks to be funny.  (and, yes, he knows exactly the context every time).

I remain in awe at this little boy.  I dream the world for him.  Every day, he proves he can attain it :)

Thank you, God, for my piece of Heaven on earth. 


"If you can dream it, you can do it."
- Walt Disney

31 for 21 Blog Challenge: DAY TEN: Statistics

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.



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 AgeRisk for trisomy 21 (Down syndrome)Risk for all triomies
201 in 1,6671 in 526
211 in 1,4291 in 526
221 in 1,4291 in 500
231 in 1,4291 in 500
241 in 1,2501 in 476
251 in 1,2501 in 476
261 in 1,1761 in 476
271 in 1,1111 in 455
281 in 1,0531 in 435
291 in 1,0001 in 417
301 in 9521 in 384
311 in 9091 in 384
321 in 7691 in 323
331 in 6251 in 286
341 in 5001 in 238
351 in 3851 in 192
361 in 2941 in 156
371 in 2271 in 127
381 in 1751 in 102
391 in 1371 in 83
401 in 1061 in 66
411 in 821 in 53
421 in 641 in 42
431 in 501 in 33
441 in 381 in 26
451 in 301 in 21
461 in 231 in 16
471 in 181 in 13
481 in 141 in 10
491 in 111 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

Tuesday, October 9, 2012

31 for 21 Blog Challenge: DAY NINE: Breastfeeding Beyond One

When I was pregnant with Jesse, I never questioned whether or not I would breastfeed him.  I, also, never dreamed that it wasn't (always) an easy chore.  Unfortunately, being a new Mom - I just didn't know how to handle a very lethargic baby Jesse.  I didn't have the proper support in place to make breastfeeding a success.  Day nine proved fatal to my breastfeeding quest.  Jesse got a bottle; it was all over.

While pregnant with James, I was determined to breastfeed.  More importantly, I was determined to succeed.  This time, I had begun talking to my friend K (a lactation specialist).  By the time James was born, K and I had a great connection.  Unlike Jesse, James just 'got it' from the first moment he tried to nurse.  He wasn't lethargic.  It wasn't a battle.  It just worked.  He began baby food on schedule and the breastfeeding decreased.  As the months went on, I worried about the day I would have to stop nursing him.  We had decided on one year.  I worried that I'd traumatize him.  Well, James independence shone through.  At ten months, he weaned himself.  He decided.  It was all over.

When we learned that Josiah had Down Syndrome, I was not less anxious to breastfeed.  Of course, I wasn't without my doubts, fears, and anxieties.  I was fortunate enough to reconnect with K, so I knew I had the best support person in my corner.  I've written previously about my experience with breastfeeding, Josiah's weight battle, etc.  With great perseverance, we have successfully breastfed our baby with Down Syndrome.  Yes, we supplemented when necessary.  Yes, we introduced baby food when suggested.  However, the whole time, I have continued to breastfeed him.  In a few days, Josiah will turn one.  One was always the 'cut-off' in my mind.  Not this time.....

I am convinced that breastfeeding Josiah (or any child with Down Syndrome) has immeasurable positive benefits. They include:
  • increased protection from infection and bowel problems
  • increased mouth/tongue coordination
  • increased stimulation
  • increased muscle tone
These are in addition to the positive effects of breastfeeding on 'normally developing' children, such as:
  • breastfeeding is more nutritious
  • gives immune protection
  • minimizes allergies
  • helps digestive system mature
  • lowers risk of SIDS
  • promotes eye and brain development
  • is more economical
Why would I stop now???

Studies indicate that breastmilk in mother's who have been lactating for year or more, have a significantly increased fat and energy content.

In the second year, 448ml of breastmilk (approximately 15 ounces) provides:
  • 29% of energy requirements
  • 43% of protein requirements
  • 36% of calcium requirements
  • 75% of vitamin A requirements
  • 76% of folate requirements
  • 94% of vitamin B12 requirements, and
  • 60% of vitamin C requirements
According to experts:
  • children weaned before the age of 2 are at an increased risk of illness
  • breastfed children between 1-3 have fewer illnesses, illnesses of shorter duration, and lower mortality rates
  • some of the immune factors in breastmilk increase in concentration during the second year
  • cognitive achievement (IQ scores and grades in school) and breastfeeding have shown the greatest gains in children who were breastfed the longest
  • longer breastfeeding duration = improved social development
  • longer breastfeeding duration eases transition to childhood
I know these benefits were always there.  My mindset about continuing is different now.  Again, it simply didn't work with Jesse.  James weaned himself at 10 months.  Josiah shows no signs of weaning and I have no intention of suggesting it.

One year down :)


 "There are three reasons for breast-feeding:
the milk is always at the right temperature;
it comes in attractive containers;
and the cat can't get it."
- Irena Chalmers

Monday, October 8, 2012

31 for 21 Blog Challenge: DAY EIGHT: Teething

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

Sunday, October 7, 2012

31 for 21 Blog Challenge: DAY SEVEN: The Creed

Today, I just want to share this great poem:

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

Saturday, October 6, 2012

31 for 21 Blog Challenge: DAY SIX: What's in a Nickname?

This is my blog entry from February 14, 2012.  I thought it was worth the 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 Blog Challenge: DAY FIVE: Thankfulness

Yesterday was a whirlwind so day FIVE and SIX entries are being recorded today :)

There isn't a day that goes by, that I don't feel a tremendous amount of thankfulness for the blessings in my life.  It is so true that 'it takes a village.'  I believe that is not only true for raising a child, but in living a happy life.

Josiah was born with congenital heart disease (numerous holes in his heart), a problem seen in approximately 50% of children born with Down Syndrome.  At the tender age of 3 months, he underwent open heart surgery.  His heart was fully repaired.  I thank God that we live where we do.  We have access to the best medical care in the world.  Our son had a brilliant surgeon, received world class care, and was returned to us whole.

My parents recently found themselves on an incredible journey, this year, on the other side of the world.  While there, my Dad began not feeling well.  Luckily, there was a doctor enjoying the same vacation.  That doctor examined my Dad, provided some much-needed medication, and checked on him twice daily for the duration of their journey.  He offered his services with no expectation of reciprocation.

My husband has had a couple of close-calls.  Twice, with years in between, I have come close to losing him.  Again, we are fortunate to live where we do.  We are fortunate to have access to incredible care.  Twice, my husband has received world class care and been returned to his family.

Because of a few individuals, who are complete strangers, I am able to continue to share my life with those I love.

The few becomes a bunch, with a few added blessings.  A bunch becomes many when you add a few more.  It is never ending.  There is always something to be thankful for; there is always someone to whom gratitude could be directed.  Those people are never far from my mind, or prayers.

Behind every blessing is grace.

We are so truly blessed.


"Gratitude makes sense of our past, brings peace for today,
and creates a vision for tomorrow."
- Melody Beattie