Monday, July 30, 2012

Weighting with Bated Breath

You might think I'm lacking in sleep if you noticed the title of this post, "Weighting" with Bated Breath.  Nope!  I'm not sleep deprived.  It was a pretty cute pun though, huh?  I AM waiting with bated breath - for Josiah's next pediatrician's appointment.  I want an official weight check.

Yes!  You heard me correctly.  I WANT a weight check and, for once, I'm excited for what I know will knock their socks off!!! 

The weight battle has been, seemingly, a never ending one.  At the last visit, he was 4 days shy of 8 months.  He weighed 13lbs 2oz.  He seemed to average 1/2 lb weight gain per month.  June 8th = 13lbs 2oz.  The MD was pleased, to say the least.  None-the-less, since then, I have avoided weighing him at home.....I don't like how obsessed I get.  So, ignorance is bliss! lol.  I stopped checking numbers. 

Last week, C (the occupational therapist) was here.  She remarked that Josiah seemed to be thriving.  This was similar to conversations I recently had with his child care specialist and physical therapist.  However, I had no numbers to go by....I just wouldn't do it. 

Well, finally, curiosity got the best of this Mama.  Three days ago, immediately after changing his diaper, I decided to get a "guesstimate" of his weight.  I double-checked.  I triple-checked.  Holy cow!  16lbs 10oz (give or take a little). 

That means that in approximately 7 weeks, Josiah has gained a whopping 3+ lbs!!!! 

I'm calling the pediatrician's office tomorrow.  I'm going to try to get him a weight-check appointment for Wednesday!  I want this on record :)

Josiah will be 9 months old in about 2 weeks.  Just for fun, I checked the 'blue books' of my other two boys for a comparison.  My first, weighed approximately 20lbs at 9 months.  My second, approximately 17lbs.  Hmmm......  I can't help it - I'm chuckling.  This is too funny!

I'll be back soon with the 'official' results.

Sunday, July 29, 2012

Sadness in the Community

My mind has been preoccupied with two young children, taken away too soon.  One was a boy, the other a girl.  Each lived in a different state.  I knew neither.  Both had contagious smiles.  Both had Down Syndrome.

Little R was about 2.  He spent most of his time in a Children's Hospital.  Like Josiah, little R had heart defects and had endured surgery.  For Josiah, surgery made him whole.  For R, the surgeries were many, solutions limited, cures not found.  Little R's parents started a bucket list and, with their help, he accomplished many of the tasks on his list.  He started a banana split for dinner craze (it became a worldwide phenomenon).  He drank (root) beer with his daddy on his 21st (month, that is).  He got a speeding ticket (for speeding down the hallway).  He enjoyed life, love, and many snuggles.  Finally, he found peace in his mother's arms.

Little K was 4.  She was a typical little girl.  She enjoyed her family, her brothers, her life.  Recently, after climbing behind a bureau, she became the victim of positional asphyxiation.  She was gone in the blink of an eye.  News spread almost immediately throughout the DS community.  Prayers were being sent up to Heaven from all corners.  God had a different plan - he wanted K and so it was.

Josiah doesn't make us sad.  His DS doesn't make us sad.  We love his smiles.  We love his curiosity.  We love his strength, courage, determination, and will.  He is like so many other children with, and without, DS.  Perhaps that's why it's sad when we lose another precious life.  All kids are precious, but there's something 'a little extra' special with our kids and the entire DS community knows it.

Prayers continue for the families who's children have gone Home.

I'm feeling very blessed for a wonderful family, beautiful children, hearts that are whole, and a life gifted by God.

Saturday, July 21, 2012

Stone Soup 072112: Coming Full Circle

Theater.  What could be better than that?  Perhaps it's not in the minds of most 7 yr olds, but it was in mine.  Theater....reaching for the stars....grasping the unreachable....Someday....

At 18, I attended the American Academy of Dramatic Arts in NYC.  What an unbelievable experience.  I had attended the local School of Performing Arts since it opened (when I was 16), and I found myself teaching there.  How sweet life was.

At 22, I walked away from the local school.  Looking back, I can't find a reason worthy enough to discuss.  I went on new pursuits, for unknown reasons.  

I ultimately achieved a Master's Degree.  That piece of paper remains in a box in my attic.  I have worked in my field for about 15 years, without purpose or cause.
I fell in love with my best friend and subsequently married.  Things seemed to be making sense again.  Then, one-by-one, each of our boys arrived.  Each one fulfilling the person I was destined to become.

Even with Josiah, the trisomy 21, the open heart surgery, my life was shaping into perfection.  Then an unexpected reunion.

When my brother passed away in September, I notified my long-lost friend (the director of the local school of performing arts).  We emailed a few times.  Then, a week later, I arrived at my baby shower.  My dear friend was there.

Josiah was born....a started this friend and I continued to talk. 

About a month ago, we reconnected face-to-face.  She told me that she wanted to start a program for down sydrome children.  What's more?  She wants me to run the program!!!  OMG!

So, in September, our new adventure begins.  In a local, well-established, school of performing arts, we introduce the Down Syndrome Program for children. 

It's amazing how life works.  It's funny how dreams are fulfilled, just not always they way we 'thought they would.'

Life always comes full circle.  I know that's true for me.

Friday's Facts 062912: Sandal Gap

I had heard of this before, and I haven't been able to find very much information on the topic.  Nonetheless, I thought I'd throw it out there....for what it's worth.

Some children with Down Syndrome are born with an extra large space between their big toe and second toe, otherwise known as sandal gap.  This is considered a soft medical marker for Down Syndrome; only 45% of those with Down Syndrome have this gap.

Sandal gap is actually a medial displacement of the big toe which causes a larger than normal gap between the big toe and second toe.  The space also dips lower into the foot than 'usual'. 

Josiah does not have the sandal gap.  He doesn't have the palmer crease.  He doesn't have short, stubby, fingers.  A lot of the 'soft' markers escaped Josiah.  So, I always find them interesting to read about.

Saturday, July 14, 2012

Friday's Facts 062212: Down Syndrome and Autism

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

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

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

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

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

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

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

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

A Helpful site:

Tuesday, July 3, 2012

Friday's Facts 061512: 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:

Sunday, July 1, 2012

Early Intervention Summary

Josiah continues to make huge strides with Early Intervention.

D (physical therapy) continues to work with Josiah on a weekly basis; he loves that he is serenaded by her every week lol.  He is making huge strides.  Josiah is able to control his own head now.  When holding/carrying him, holding his head is no longer a priority.  He controls his head amazingly well while being held (supported) in a sitting position.  D even rocks him while sitting, and he is still able to control his head beautifully.  When on his tummy, he lifts his head like nobody's business, and turns it side to side :)  He continues to complain when it comes to sidelying, although today he did so without a single complaint.  His stamina has grown by leaps and bounds.  It's amazing to see.  During this morning's session, D worked him hard for over an hour; He was exhausted but still ready to tackle anything.

C (occupational therapy) has just begun seeing Josiah on a bi-weekly basis.  He's eating more baby food now.  I cannot get over how well he is doing.  Considering his high pallette - I thought he might have difficulties; Once again, we stand corrected :)  C recently observed an eating session.  She was amazed how well Josiah closes his mouth around the spoon, 'chews' his food, swallows, and doesn't allow his tongue to hang out of his mouth. 

K (child specialist) continues to come weekly, as well.  Josiah loves her :)  She takes everything that the above specialists are working on, and does them all!  It's incredible. 

This week, 2 out of his 3 'girlfriends' are on it will be a mellow week.

Lots of exciting things going on :)