Under the Shadow

He greets me as soon as I am there, wherever it is we meet. He smiles big as he guides me to each member of his family to ensure love is shared all around. He hears what I am saying even though his focus is on the tech toy. Age 11 is Marty’s banner year, he is reading voraciously, he is writing clear messages. He is shaving! I am happy for the amazing strides in his abilities, at his growth because I know the pride held in his heart. He is so content in the presence of loved ones, and I wish that contentment carries him through those times he walks the hallways at school alone.

Today we sat together at church. He repeated each Amen. He watched his brothers and sister interact with other children but was content at my side. We shared smiles and giggles. Viewing his incredible effort with a complicated coloring app he held out to show me. There was a call for prayer and reflection, as I prayed, he snuggled in quietly. No longer able to sit on my lap; he rested his head on my shoulder. With my arm around him and his hand on mine, we shared a moment under the shadow of God’s wings.

Marty Stands Tall-Gains Wisdom

My grandson  Marty as an eight year old: Technology wizard, big brother, loving son, learner, writer, speller, Mr. Comedian!  A few months after Marty turned eight, he came down with pneumonia.  Like many Down Syndrome kids, this meant for Marty, a stay in the hospital as the pneumonia lingered on.  His sensory issues come into play when care giving is require for him. Initially, Marty was not a happy hospital camper with IVs, pulse ox monitors, oxygen masks, cannulas, blood pressure cuffs topped with constant poking and prodding.

Being sick can put anyone in a bad mood, Marty was especially sad to be away from his home. He would sign “home” fairly often or ask for his brother and sister.  His parents were there every minute with his favorite technology at the ready, taking turns to be by his bedside.  Family and friends gathered for support. Prayer was sent heavenward.  Eventually after a week, Marty slowly accepted the prodding and poking of his care team to ensure his oxygen levels were improving.  After ten days, he even showed the nurse which arm to do his blood pressure  and sat still for temp readings.

Around the 2nd week mark, my daughter’s friend came to the hospital to visit and as usual had a sweet game for him.  She told him not to cough but showed him how she could do it.  He loves a good game and immediately started coughing and laughing. She would repeat the steps and he would follow her lead.   The nurses and his parents had all tried but he was having none of their prodding.   After a few minutes of this role play, 2 nurses rushed into the room.  “Whatever you are doing, keep it up, his oxygen levels are improving”, they said.  With that simple game Marty was home in a few days after over 2 weeks of worried monitoring.  He endured!  He showed strength and courage.  He accepted the care and love that was showered to heal his lungs.

He and I missed his brother’s 6th birthday party, organized while mom and dad were at the hospital..  A week after returning home, he happily waved good-bye as his family left for the party–he was staying home with Grandma–and of course, ample time with any technology he could get his hands on!  We had a great time together and it provided further assurance for me that he would be all right,.

There are times we must accept the care others have for us, and there are times we must forego a special event in order to retain our health–this is what Marty learned shortly after his 8th birthday.

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 a rugged determination; he loves with his entire heart, he is a learner yet he is not a language user.  But he speaks in other ways–mainly through his heart, sign language and a glance and smile. He knows how to work every technical gizmo in his home.  He wins hearts with his dimples and knows how to make a person laugh.  To include others, he motions to come with me and he shows you what you need.  He finds his own way.

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 us 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!

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.

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!

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!

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.

DS- Teaching Tools

Learning and memory require balance between inhibition and excitation in the brain.  In Down Syndrome, according to Dr Omar Khwaia, there appears to be excessive inhibition by GABA neurons.  How to overcome this?  Currently Roche is in clinical trials for a drug that decreased excessive inhibition in mouse models.  There are other options now but first you have to know the Down syndrome behavioral types.

Down Syndrome behavioral phenotypes are:

1. Language deficits
2. Social Strengths
3. Visual processing is better than verbal processing
4. Motor deficits
5. Poor problem solving
6. Task persistence

Down syndrome Strengths:

• Visual spatial processing
• Core social relationships
• Receptive language

Relative Challenges:

• Verbal processing
• Expressive language
• Motor function
• Goal-directed behavior
• Distractable
• Stubborn/strong-willed streak

Lisa Daunhauer, ScD and Deborah Fidler, PhD have identified tasks parents and teachers can do to improve executive functioning in Down syndrome.  Executive functioning is the cognitive processes integral to adaptive, goal-oriented actions.

Executive functions are:

• Working Memory
• Motor Planning
• Shifting
• Inhibition

To improve EF in Down syndrome, Lisa and Deborah suggest:

For Inhibition:  Games like Red light/Green light and Duck, Duck, Goose plus daily routines that include an element of delay (sitting before television is turned on.)

For Working Memory:  Games like memory and Simon Says plus daily routines that include organizers, activity boards, and schedules. Prompts are good too; such as what goes next, what just happened; first this than that.

For Shifting:  Games that use a search or scan of objects on a page plus reading joke and riddle books.

Down Syndrome Awareness

We are walking for Down syndrome Awareness on October 6, 2012 at the Detroit Zoo.  Marty’s parents have gathered almost 90 people for the Marty’s Monkeys team.  What an incredible showing of love!  Participants include family, friends, church family, co-workers, etc.

I wish that each year they would pick one aspect of the Down syndrome life  to focus on. Just so people are aware that Down Syndrome is not a cute condition nor it is not a happy condition–both adjectives I have heard describe the child who has the condition.  Down Syndrome is nothing to be ashamed of nor is it something to be glossed over.  It is what it is  and that can be different for each person.

Before Marty was born I had never seen a Down syndrome baby nor a Down syndrome toddler!  There are more than 50 features of Down syndrome but not every person with Down syndrome has all the same features or health problems.  For most of my life I believed that the most significant aspect of disability for Down syndrome was  cognitive ability but most children with Down syndrome have mild to moderate cognitive disability.  I have stated previously that I feel hypotonia or low muscle tone has been Marty’s greatest struggle.  What gets him through the struggle?  His family’s love.

I think for me this year if I was to choose one thing for people to be aware about Down syndrome is that those with Down syndrome need to be loved.

Marty spends the day

On a recent Saturday Marty spent the afternoon with me.  Just Marty and I, it was a big deal and a beautiful day!  I do not get to spend too much time one-on-one with Marty outside of the home. Heading out we walked hand in hand to my car and he slipped right into the car seat.

I drove with an eye out for a playscape.  Remembering a new school I drove there knowing the equipment would be new and safe.  When we arrived, I was glad Marty had the entire schoolyard alone.  He could do whatever he wanted!  As soon as he was out of the car he made a bee-line to the colorful structure.  There were stairs, slides, swings, and things.  He played until he was ready to go.

Next stop was the pet store.  Marty loves animals and the store we visit has a great variety-birds, turtles, mice, and bunnies.  Plus there were dogs and cats roaming the aisles with their owners.  We watched a turtle try several times to get from the water to a drying platform.  Marty laughed each time it lost the struggle and dropped back into the water.  Soon it was time to go to my house for lunch.

Marty watched some Mickey while he ate until my Woadie cat walked by and the chase began.  Woadie is a tolerant cat because he loves being the center of attention.  That cat will do almost anything to be watched including Marty’s not-so-gentle pats.

Eventually Marty made it to my room where he always goes to look at a picture of my family taken when his mom was about 10.  He always points to her first then Uncle Ryan, Aunt Holly and finally me.  This time before leaving he noticed my grand collection of jewelry-making beads.  He smiled and pointed but I told him those were Grammy’s.  He was pretty insistent about looking at the beads so I placed a red velvet box on the floor that contained large handmade oblong beads.  Quite heavy, I thought  they could withstand small hands.  Marty sat on the floor to play his favorite game, TOPI (Take Out, Put In).  He loves all things repetitious like his train going round and round or TOPI over and over and over.

There was a long game of TOPI until I noticed the beads getting chipped.  Luckily Woadie slowly walked by and the chase was on again.  After a little walk in the yard, we came in and I cleaned up the lunch dishes.  When I stepped back in the living room, here came a smiling Marty carrying a large container of beads with a sliding top (and it was sliding).  Only about 50 beads dropped to the floor–time for another game of TOPI!

With the beads all picked up, I thought we could work on his pouring skills.  I showed him what to do with the container of loose beads and a plastic measuring cup.  Success!  He was so careful and so proud of his new skill!  He really concentrated and time ticked away.  His father would pick him up soon, I needed to get Marty’s attention away from the beads or he would never go home.  I set up his blocks which he went and inspected.  He came looking for his beads but the container was no longer where he left it.

He ran from the room straight for my heavy wood coffee table.  He banged his head and fell to the floor.I was broken-hearted he felt so disappointed!  I wished I had communicated so he understood it was time to put the beads away.

I do not know why he bangs his head on things==sometimes he just uses his hands, smacking  this temples in frustration.  He has not learned coping mechanisms nor is he able to verbalize yet.  I wonder if there is some static noise he is trying to quiet when he gets upset.  Something we need to work on.