Marty Turns Eight

My grandson will be eight years old soon.  It has been too long since I have written about him to encourage other grandparents that Down Syndrome is not a negative in one’s life. It is a beautiful life but sometimes life also gets in the way.

Still Mr. Incredible in my book, Marty faces challenges with determination; he loves with his entire heart, he is a learner yet he is not a language user.  But he speaks in other ways. and he knows how to work every technical gizmo in his home.  He wins hearts with his smile and knows how to make a person laugh.  To include others, he motions to come with me and shows you what you need.

He has a great group of supporters yet sometimes is left out.  There are times when he chooses not to participate, especially in the rain. I have high hopes for him and I try to show him there are moments for just we two.  He treasures those moments and returns the love.  So Happy 8th Birthday Marty, you are important, you do matter, and I love you with all of my heart!

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Life Moves-Marty is Seven!

It has been a long time, since I have written of my grandson Marty who has DS.  Life just gets in the way:)  Marty is in school now, first grade!!  He is writing his name!! Using scissors!! Spelling!! Though still not completely verbal, he has many tools he uses to communicate. There is a binder sorted by word types and topics he used last year.  He loves technology so the communication tool this year is right up his alley.  It is an upgrade from the binder but still using the layering of word types and pictures.  (Pictures of Marty and family members can be added.)  He still relies mainly on vocal sounds which is great.  Hope is that the Karaoke machine he received at Christmas will exercise his vocal chords and encourage practice of sounds.  He loves to help vacuum, so he got a small vacuum cleaner too.  He loves his family so completely but sometimes likes to admonish his brother or sister for a wrongdoing.  I still love that he greets me with a palm up and a shout of MAH!  Such a treasure!!  If you have a grandchild with down syndrome do not be afraid, do not worry too much, just love and watch the growth and progress they make at their own speed.

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Lost Child –Found on the porch

This was written when I worked as a medical research program manager.

Poetry Road

One cold morning moment

she walked unto the porch

Did she cry out, did she stumble,

Did she pray

At one point she collapsed

And lay there as the snow covered her soul

EMS came when she was already cold to the touch

How lonely the list of her personal effects

Identified a pair of pants

Two shirts and two keys

An old watch

A pair of oddly colored earrings

The remaining twenty documents testified of last efforts

Last breathes

Filed and justified

The end of a life

Barely 60 years old

The story in the papers told

Inner city born and bred

Child grew and now she is dead

When was the moment

Addiction seized

Innocence scrapped

Confidence trapped

Consciousness averted

The heartbreaks remain

As this is a story from a decade ago

The voices still continue everyday

Those who die alone

Just as they lived

where is the call…

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Marty Turns 4

Marty has a determination and confidence in all that he does.  You can see it in his face as he concentrates on accomplishing a new task.  He has conquered his discomfort with cups  and no longer drinks with a sippy lid. He still has to learn the concept that if you throw an open cup the contents do spill all over..not like the sippy cup he has thrown to the floor when he is done which occurred many, many times.

He has learned a few more words and his family supports him to continue using those new skills.  For instance, we say “Ready, set….and Marty finishes with GO!!  He loves his family, routine, rough housing, creativity, puzzles, and of course movies.  he has mastered the DVD player and puts the movie back in its cover when he is done.  He can be helpful gathering everyone’s shoes when it is time to go bye-bye.  He will start his second year in school in a month.  I am sure he will surprise his teachers with the things he has learned over the summer!  His Down Syndrome diagnosis does not define who he is–which means he is as unique as any other individual and does not fit into a defined assessment.  I predict he will astound even those who love him deeply!

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Marty spends the day

Marty spends the day.

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Big Brother Marty

With the recent addition of his sister Adele and with 18 month old Silas, Marty is the attentive big brother of two now.  Marty adores his family.  He loves  to watch movies side by side with his brother and goes to check on little sister in her swing.  Marty and Silas share every mealtime where Silas the explorer encourages Marty to try new foods by example.  Marty usually sticks to the same foods but will try a morsel as he watches Silas grab and munch.  When Adele came home, Marty proudly held her (with  supervision, of course).  He did have some adjustments when Mom was not readily available, he liked to go and empty out all the toy bins on his shelf–a game Silas enjoyed too!  When it is time for his brother to go to bed, Marty has a moment of mourning then realizes he has his parent’s undivided attention for the next 30 minutes and usually snuggles up.  It is so wonderful to watch Marty adore his family–I cannot wait to see their relationships evolve as they get older when the laughter kicks into high gear, the ball throwing gets a little competitive and perhaps sister Adele will teach both of her brothers some kitchen play moves!

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Puzzles

Marty has been progressing swiftly since he started pre-school.  Now three, I think school gives him confidence.  He carries his book bag to and from school proudly putting it on.  He owns it!  He is mastering many Melissa & Doug puzzles especially the ones with handles in the center of each piece.  One of these he is particularly fond of has fish of every color, the tail is the piece removed and replaced.  You can see the concentration on his face as he removes each piece, placing the tails neatly to the side.  He checks to see he has removed all the pieces with his tiny fingertips.  He likes to start replacing the pieces with the black tail and usually the pink one is last.  Replacement is perfect every time now and he smiles with such accomplishment!

My daughter has a Russian nested doll  set with different colored cats painted on each nesting unit.   Marty and I worked with this the other day.  I placed the tops and bottoms in a double line after Marty opened each unit of the set.  When he came to the final piece he learned to “place it in the bottom” then “put the top on”.  After about 5 tries he was very successful at stacking and unstacking the set.  How exciting it all was!  He learned more about tops, bottoms, and we had the best time loving each other.

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