31 for 21 Challenge: Day Thirty One. Halloween

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

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

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

He was a nice man.

He went out of his way to say hello.

He went out of his way to connect.

It was a nice!

That was the highlight of my evening :)

 

31 for 21 Challenge: Day Thirty. Tips for Parents

Tips for Parents

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

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

Help for Babies and Toddlers

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

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

To access early intervention services for a child up to his or her 3rd birthday, consult NICHCY’s State Resource Sheet for your state. It’s available online at: http://www.nichcy.org/state-organization-search-by-state

There, you’ll find a listing for early intervention under the first section, State Agencies. The agency listed will be able to put you in contact with the early intervention program in your community.

31 for 21 Challenge: Day Twenty Eight. Textures

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

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

There is a great chart indicating motor/oral motor milestones for feeding development.  It can be found here:
http://www.fdhkids.com/developmental_milestones/feeding_development.html

Here is a simplified list of feeding developmental milestones:

Before birth, the baby:

•

Begins to develop the sucking and suckling reflexes around 36 weeks.

At birth to three months, the baby:

•

Demonstrates many reflexes to protect his/her airway.

•

Responds to stimulation in and around the mouth.

•

Turns his/her head toward the nipple when the caregiver strokes the cheeks.

This signals that the baby is ready to eat.

•

Consumes breast milk or formula using a nipple.

•

Coordinates his/her breath with two to three sucks of liquid before swallowing and

breathing.

At three to six months, the baby:

•

Brings both hands up to clasp the bottle but needs assistance holding it.

•

Consumes rice cereal or pureed fruit and pureed vegetable baby foods.

•

Eats from a small infant/toddler spoon during feeding.

At six to nine months, the baby:

•

Holds the bottle independently.

•

Cleans the spoon with his/her upper lip.• Eats pureed meats and a variety of pureed baby foods.

At nine to twelve months, the baby:

•

Demonstrates lip closure while swallowing liquids and soft solids.

•

Begins to self-feed by using his/her fingers to grab small foods. The baby may

attempt to eat small, soft dissolvable solids (i.e., soft crackers and small cereals

like Cheerios™).

•

Begins to experiment drinking liquids from a sippy cup.

•

Begins to consume mashed table foods.

•

Drinks out of a sippy cup and attempts to hold the handle independently.

•

Begins to drink through a straw.

At twelve to eighteen months, the toddler:

•

Coordinates sucking, swallowing, and breathing patterns for longer

sequences.

•

Begins to eat finely chopped table foods.

•

Bites through crunchy foods such as cookies and crackers.

•

Moves the food in his/her mouth from side to side as he/she chews.

At eighteen to twenty-four months, the toddler:

•

Feeds him/herself using a spoon but may still need assistance.

At twenty-four to thirty-six months, the toddler:

• Consumes a variety of liquids and solids through straws and open mouth cups.

•

Uses a spoon to scoop soft foods while feeding him/herself.

•

Independently moves toward fine tuning all feeding skills.

At thirty-six months to five years, the child:

•

Progresses toward chewing and swallowing advanced textures (meats, fried foods, whole fruits, etc.) with close supervision by a caregiver.

•

Begins (with close supervision) to use a fork to stab food.• Drinks from an open mouth cup with no assistance.


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

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

- Walter Elliott

31 for 21 Challenge: Day Twenty Seven. Teething Chart

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

Primary teeth are also called baby teeth or deciduous teeth.

There are a total of 20 primary teeth:

     8 incisors

     4 canines

     8 molars

The begin to erupt from the gums at 6-7 months.

Eruption of baby teeth should be complete by age 3 or it is considered atypical.

According to research, children with Down Syndrome (DS) tend to demonstrate a delay in primary teeth eruption.  Not only is eruption often delayed, but teeth often follow an abnormal sequence.  In some children with DS, eruption may not begin until age 2.  Complete eruption (of all 20 primary teeth) may be delayed until age 4 or 5.

Here's another 'typical' chart for tooth eruption:

Average times of tooth eruption

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

In a person with Down Syndrome, there may be numerous dental concerns.

A lot of people with DS have smaller upper jaws.  Their tongue may protrude causing the person to 'mouth-breathe.'  Upper and lower teeth may not fit together properly.  In a person with DS, teeth are often smaller and have more irregularities.  The delay of teeth may affect a parent's ability to introduce certain foods (as the child won't be able to chew adequately).  Sometimes teeth are missing or malformed.  I found surprising that the rate of tooth decay appears to be less frequent in a person with DS, though periodontal disease is still possible.

When we had Jesse, he was the only one from whom we could gather a baseline.  As luck would have it (lol), Jesse was very quick to teeth.  He got his first tooth at 3 months old; he had all the teeth of a two year old on his FIRST birthday.  So, five years later, it is no surprise that he has lost two baby teeth, gained two adult teeth in addition to 3 of his 4 six year molars.

I would have to guess that James was "average" in his teething though I don't recall a lot of specifics.  His teething seemed slow because Jesse was "unusually" quick.

When Josiah was seen by dental in June (he was 8 months old), he hadn't developed any teeth yet.  The dentist said to us, "Don't be surprised if Josiah doesn't get any teeth until well after his first birthday."  I think Josiah was listening.  I think he abruptly decided to prove the 'expert' wrong.  (This seems to be a favorite past-time of Josiah's).

Over the summer, age 9/10 months, he gained his two lower central incisors ('normal range' 6-10 months).  Last week, age 11 months, he gained his first upper canine ('normal range' 16-23 months).  Yesterday, days shy of 1 year, he sprouted his two upper central incisors ('normal range' 8-13 months) AND one upper lateral incisor ('normal range' 8-13 months). 

I've said from the beginning (even while pregnant), Josiah is going to surprise people.  He will accomplish more than anyone can even dream!  Look out world!!!  Here comes Josiah :)

"Don't underestimate me!  I would never do that to you."

- unknown author

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

A repost from 9/25/12:

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

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

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

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

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

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

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

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

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

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

I'll take it!

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

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

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

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

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

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

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

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

Some key behaviors that may point to the possibility of autism in a child with Down syndrome are:

1. Extreme Autistic Aloneness - The child does not relate to people normally and seems to prefer to be left alone. The child seems to consider other persons as objects, not people. He will not join in group play with other children. Unlike children with Down syndrome, who are very lovable and huggable, the autistic child does not want to be held.
2. Anxiously obsessive desire for the preservation of sameness - Any differences in daily routines can cause a large upset.
3. Lack of eye contact - Autistic persons typically do not make eye contact but will look away or "right through" other people.
4. Shows repetitive, "Stereotypical" movement, like sitting for long periods of time with an object in his hand and just waving it back and forth looking at it.

Individuals with autism usually exhibit at least half of the traits listed below. These symptoms can range from mild to severe and vary in intensity from symptom to symptom. In addition, the behavior usually occurs across many different situations and is consistently inappropriate for their age.

• Difficulty in mixing with other children
• Insistence on sameness; resists changes in routine
• Inappropriate laughing and giggling
• No real fear of dangers
• Little or no eye contact
• Sustained odd play
• Apparent insensitivity to pain
• Echolalia (repeating words or phrases in place of normal language)
• Prefers to be alone; aloof manner
• May not want cuddling or act cuddly
• Spins objects
• Not responsive to verbal cues; acts as deaf
• Inappropriate attachment to objects
• Difficulty in expressing needs; uses gestures or pointing instead of words
• Noticeable physical overactivity or extreme underactivity
• Tantrums - displays extreme distress for no apparent reason
• Unresponsive to normal teaching methods
• Uneven gross/fine motor skills. (May not want to kick ball but can stack blocks.

Adapted from the original by Professor Rendle-Short, Brisbane Children's Hospital, University of Queensland, Australia.

Diagnosis of Autism in Down Syndrome - DSM-IV Checklist

1. A total of six (or more) items from (1), (2), and (3), with at least two from (1) and one each from (2) and (3).
   
   1. Qualitative impairment in social interaction, as manifested by at least two of the following:
      
      1. Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.
         
         • Not normally seen in Down syndrome, more indicative of autism.
      2. Failure to develop peer relationships appropriate to developmental level.
         
         • Not normally seen in Down syndrome, more indicative of autism.
      3. A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by lack of showing, bringing, or pointing out objects of interest).
         
         • Somewhat true in Down syndrome but much more pronounced in autism.
      4. Lack of social or emotional reciprocity.
         
         • Somewhat true in Down syndrome but much more pronounced in autism.
   2. Qualitative impairments in communication as manifested by at least one of the following:
      
      1. Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime).
         
         • Not normally seen in Down syndrome.
      2. In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others.
         
         • Normally seen in Down syndrome, although not to the extent seen in autism.
      3. Stereotyped and repetitive use of language or idiosyncratic language.
         
         • Seen somewhat in Down syndrome but not to the extent seen in autism.
      4. Lack of varied, spontaneous make-believe play or social initiative play appropriate to developmental level.
         
         • Not normally seen in Down syndrome.
   3. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
      
      1. Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal in either in intensity or focus.
         
         • Not normally seen in Down syndrome.
      2. Apparently inflexible adherence to specific, nonfunctional routines or rituals.
         
         • Not normally seen in Down syndrome.
      3. Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole body movements).
         
         • Not normally seen in Down syndrome.
      4. Persistent preoccupation with parts of objects.
         
         • Not normally seen in Down syndrome.
2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) Social interaction, (2) Language as used in social communication, or (3) Symbolic or imaginative play.

• Children with Down syndrome will normally display some deficits in these traits depending on the severity of mental retardation. Since this is not entirely unexpected, it is usually ignored in the records and not so noted. Therefore when autism is diagnosed at a later age and the records or memory is searched for this evidence it is either not found in the official records of the child or it is forgotten about because it was not deemed all that unusual at the time. The diagnostician may then discard the possible diagnosis of autism because the appearance is given (falsely) that these traits were not present prior to 36 months of age. Because of this quirk in the diagnosis, there probably are many persons with Down syndrome with autism but it is not so diagnosed.

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

A Helpful site:

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

31 for 21 Challenge: Day Twenty Three. Sign Language

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

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

3. Sign language is not just for the deaf; It can be helpful with:

• apraxia
• autism
• cerebral palsy
• communication impairments
• down syndrome
• deafness/hearing impairment
• LLD - language learning disability
• various learning delays
• medical non-verbal needs, i.e. tracheotomy
• varying degrees of mental impairment

4. The development of speech, language, social, emotional, and academic skills is enhanced through the use of sign language.

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

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

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

How to teach sign language to your baby:

1. Start simple (eat, mama, etc)

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

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

4. Make it fun!

A few sites to help get you started:

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

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

http://www.signingsavvy.com/

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

A repost: What's in a Nickname?

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

When I returned home, I thought of that nickname and decided to look up the word "doodle."  I know it means to scribble, etc.  However, I wanted to research the word further.  Here's what I found:

http://www.thefreedictionary.com/doodle defines the noun as being "A figure, design, or scribble drawn or written absent-mindedly.  The informal noun means "fool or simpleton" from the German dudeltopf.

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

http://www.merriam-webster.com/dictionary/doodle defines the noun as "a minor work."

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

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

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

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

It's just my thought....

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

- Benjamin Franklin

31 for 21 challenge: Day 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 Two. Audiology

When Josiah was born, he failed his newborn hearing screen.  We were sent for a follow up a few weeks later.  Although he passed, he already demonstrated 'borderline normal/mild hearing loss.'  It was explained that this is common in children with Down syndrome.  In part, their particularly small ear canals can play a role.

Josiah has had audiology follow-ups locally, as well as at Children's.  At Children's, the results are always 'inconclusive.'  Locally, they tell us Josiah can hear, but not as well as other children his age.  Simply put, his inner eardrum could hear at 0.3 & 0.5 levels.  Listening to speech, he could hear sounds as quiet as 25 db (normal is 20 db or less).  Hence, he is always labeled 'borderline normal/mild hearing loss.'

Three weeks ago, Josiah got tubes in his ears.  

Today, we went locally for a audiology follow-up.  His inner eardrum could hear at levels 1.3 & 1.6.  The tubes have more-than-doubled his capacity to hear.  While listening to speech, he could hear sounds as quiet as 10 db.  The results were NORMAL!!!  His hearing falls within normal limits!!!

We go to bed tonight, very grateful....as always :)

31 for 21 Challenge: Day 1: DS Awareness

October marks Down syndrome awareness month.  I have decided to, once again, participate in the 31 for 21 challenge.  This means that each day during the month of October, I will post a fact/thought/etc about Down syndrome.  It is all in an effort to raise awareness for Down syndrome.

I was twelve weeks pregnant, when the word 'markers' was used as a warning.  A routine test indicated that the skin of the back of Josiah's neck was too thick.  This was the first possible sign of a 'problem'.

As the next several weeks passed, more markers became evident.  Josiah's leg and arm bones appeared shorter than 'normal.'  The bridge to his nose appeared (possibly) flatter.  He appeared to have a hole in his heart.  As the number of markers grew, so did the chance of a Trisomy 21 diagnosis.

At 19 weeks gestation, we decided to have amnio.  We hadn't had the test with our first two boys.  This time, it seemed the responsible thing to do.  We knew it would either confirm or disprove the theory of a chromosomal abnormality.

48 hours after the amnio, our OB called.  I think it was the only time he has ever called our house.  The preliminary report was in.  Josiah, in fact, had three copies of the 21st chromosome.

We were relieved that it was Down syndrome.  Trisomy 13 or Trisomy 18 were two possibilities we had feared.  It was neither; We were relieved.  That was on a Wednesday.

On Sunday, we decided to share the news with family.  

At no time did we ever consider the possibility that we wouldn't keep, and raise, this life we had been gifted.  Any suggestions to the like we immediately, and vehemently, discarded.

As Josiah nears his second birthday, I remain in awe of a beautiful boy with an extra chromosome.  He has added life, love, laughter, and spirit to our home and family.

We have no regrets. 

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

 

By Erin McClam

A T L A N T A, June 7

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.