My World Down Syndrome day at Classical Conversations

Today I visited classical conversations homeschooling group with Rhyker and Tucker- it brought back many memories of being at a co-op and trying to integrate Tucker – I remember the challenge Tucker had with the sensory overload, the anxiety and tummy issues it caused him- changing his dirty diaper on a blanket on the the floor in the handicap stall because he was too big to put on the changing table and there was no other place–the frustration of trying to get him to stay in a classroom and not understanding the sensory overload he was dealing with and finding myself frazzled, overwhelmed and in tears the whole way home. I did not have that same experience today- my now 20 year old young man sitting in a room of young children-who far surpass him in ability- the other kids stare- trying to make sense of this “man- boy” they watch him attempt to color and struggle to hold a colored pencil- he covers his ears when things get too loud; I wonder if he might decide to dart OUT of the building and I sit holding his hand wondering: Monica, are you insane? WHAT Are you DOING HERE????
One of the girls shares her snack with him- ❤️
And I’m reminded of why I came in the first place.
I don’t know how this will play out for me in the fall, but today I was reminder that I AM a Down syndrome mom- and that my son still doesn’t fit easily into this world of “normal”- but maybe, just maybe- this group might be a place where he can be the wonderful, “square peg” he is.

Advertisements

My Garden of Weeden: The perfectly imperfect garden

Created with Nokia Smart Cam

Created with Nokia Smart Cam

Created with Nokia Smart Cam

gardenbirdhouse

I love this spot in our somewhat  un-kept yard; it is my canvas of creativity, my place of pondering and my homeschooling laboratory . It is a hobby project that never arrives at being finished, but is an unending task of  creating, digging, weeding, watering, planting and getting dirty. For years I have carved into this rocky soil. I have brought in truck loads of dirt, bags of peat, wheelbarrows of compost and chicken manure. I have gathered rocks from our property, been given rocks and even made cement rocks to form a path for little feet to walk on.  This little garden started as a butterfly shaped flower garden full of flowers,some 17 or 18 years ago, by my first born son; our humble attempt to grow something in this rocky soil. It then expanded into a sensory experience  garden for my son with Down syndrome; He would be able to sit and smell the herbs, touch them and pick them and even eat them. A sand box in the middle where he could sit and play and feel the sand through his fingers and hear the birds and watch the butterflies flutter by. He sat mostly~ he learned to scoot as a toddler, but never crawled. My vision of his little feet pitter-pattering through the paths didn’t really ever come to fruition; He did not walk  until he was 6 years old and needed much support on the uneven surface.

gardenpath2gardenpath3But what a delight this little spot has been for all of our children. A therapy for myself, a never-ending summer project that keeps me outside near the children, a stone’s throw away,  as they play and swim.  It has grown both food and flowers, flowers that have been bouquets for friends or for our evening dinner table, flowers pressed for cards, made into daisy chains or  used to tell stories of old.  gardenpoppy

gardenpot

gardenflower

The herbs used for tea, cooking or stuck in a vase to adding beauty and a refreshing  smell to a room and even sprigs of fennel to chew on with a sweet, licorice flavor our:  “garden candy”.   There are bird houses that  have housed a nest of violet green swallow-tails almost every year and the red bee balm and hollyhocks that grow tall in late summer that become a  playground for hummingbirds and butterflies who flit from flowers to flower in the hot summer days.  The rocks a hidden haven for bugs to live.turned over for observation by a young child whose heart is full of wonder of God’s glorious creation. Green bean tee pee and sunflowers, to find shade under and  strawberries to nibble and cherry tomatoes to eat hot off the vine unwashed dusted with a bit of healthy dirt.  gardenbee

gardenbench

gardehosta

My garden is a continuous mess. There are always weeds growing in the path and a wheel barrow and garden tools and hoses lain in various places always in the way due to interrupted work;it seems they never find that finished placed.  An empty hole in the middle where a small pond once was lies empty waiting for a new liner and baby gold-fish. Part of the stone path is still  undone, just dirt, dust and weeds. But my garden is still a place of peace and delight. It is imperfect. It was never meant to become  a manicured spot of perfection. I am sure there are those who look at my “garden of weeden” and  see the mess and the undone, but when one looks very closely, there is  beauty among-st the weeds, thorns, stones and dreams. gardensunialgardenwaterA  playground for children. A garden they can run through, pick from, dig in and enjoy. I have always loved  that about my garden. No straight rows to stay off of, but a place they can discover, imagine and play.  Sometimes all a child needs to learn is a place where he can  make observations  and delight in. My imperfect garden has always been the perfect fit for us; a discovery center of living science and a play ground full of dirt, rocks, bugs, birds, worms, snakes, frogs and plants. A place to learn and love the beauty of God’s creation. Where it is OK to touch, make observations, smell, taste and a place to get your hands dirty where one can fall in love with the amazing idea that when you plant a tiny seed….God makes it grow!gardenshousegardenshed

gardenglvoes

Some of our favorite gardening and nature books:

Sunflower Houses

Roots, Shoots, Bucket and Boots

Handbook of Nature Study

Nature Journaling

Mary Francis gardening book

Is IT WORTH IT?

When our son was younger my husband came home one day and said a friend asked him this question:

“IS IT WORTH IT?”

I could say all sorts of mean things about this person and his question, in fact, at the time, I am sure I did.  It really just showed me his lack of understanding about what life is really about and that made me sad for him.

You begin to realize, when you travel such a road as this, that sometimes those who are really “disabled” are those who choose to live without understanding what is truly important.

tucker chilling

IS IT WORTH IT? 

What kind of question is that?

At first the question angers me, 

But after a moment~ it just saddens me;

It is question of ignorance.

Some may question whether having 

any child is “worth it”.

It costs so much!

Time, energy, and money.

You life becomes caring for them,

Worrying about them.

Training and teaching them,

so that they may someday be able to care for themselves.

It’s all about giving~

Giving a part of yourself and

Sacrificing part of yourself to help another.

To help someone grow in love, 

so that their lives may be blessed 

with people who will love them and care for them.

KONICA MINOLTA DIGITAL CAMERA

photo by Erin Carlson

Having a child with mental and physical challenges

is not so different.

Yes, there are a lot more “things” to deal with~such as 

developmental,  and health issues and 

if your goal in life is to see your child

become a rocket scientist~

you will probably be disappointed.

But if your goal is to help build a person

to be the best that he can be.

To help this person overcome the many

obstacles that are in his way~

to help him learn, love and laugh~

You someday realize you are raising nothing short

of a little hero!

highfive

photo by Kelli Schmieder

and in the process you 

learn and grow so much

you begin to wonder……

Who

has  actually been

teaching

who???

tuckerwalk (1)

Our Silent Victory At Special Olympics

When I thought about doing special Olympics swimming with my son, I really wasn’t sure if it work for him.  I had no idea  how he would react in such a loud, stressful situation.  I’ve seen him fly over nursing desks at doctors offices, dart out of medical buildings into parking lots, wrestle the dentist on the office floor.  I’ve  seen him glue himself into his wheelchair, becoming more and more obstinate until there is a glaze over his eyes and words of reason are interpreted  as  a “blah, blah blah” that makes no sense to his closed ears.   There have been times when he has gone into shut down inside a public restroom unmovable for an hour or sometimes two until he could collect himself and get the nerve to leave the “safety” of quiet. 
 tuckerso32015
                                                                                                                             photo by Kellie Schmieder
  I confess, I was apprehensive at what he would do at each practice — could I even get him up and out the door that early on a Saturday morning? Could I get him to leave the pool when  class was over? Would he try to touch people? Would he do what was expected of him, or insist on turning somersaults underwater?   But how he surprised me!  Armed with my young living vetiver oil, he took to the class each week like he was the easiest kid in the world!  I was unsure how long it would last; it was loud, full of swimmers and he had to swim laps-many laps!  But it was a safe, friendly, inviting fun environment with wonderful coaches and volunteers.  He now counts down to his favorite day of the week: SWIMMING DAY! 
But when it came time for the special Olympics  competition, I was faced with new ” what ifs”. I just wasn’t sure how he would do; a new place, new pool– lots of waiting….where would I dress him?, where would I take him to pee? Would he understand what was going on? Would he decide not to get into the pool, would he decide not to get out? What if he decided he had to pee while he was in the pool, or worse….poop?  But once again, armed with vetiver oil and cederwood, his favorite toy: Fozzie Bear, and  an iPod-we ventured to our first ever Special Olympics competition.
highfive
He stayed there half the day; he competed in three events, two in the small pool and one in the big pool.  He didn’t cover his ears, he didn’t panic, he didn’t get obstinate and  he didn’t go into shut down in the bathroom.  He made it to the toilet on time, he seemed engaged, he was so happy, excited to be a part of something that made him feel special and he was surrounded with friendly volunteers and his coaches gave him amazing support. 
The whole experience was truly amazing!                                                                                                                          
And although he did finally meet his limit and went into shutdown before we left, he  made it through what he had gone there to do. What he DID  was an amazing feat and I know and understand better than ever, just what an invaluable opportunity Special Olympics really is.  I am forever grateful for the experience for him and for the wonderful volunteers that make it happen.
 
And yes, he did win some medals,but I think the biggest win was that he mastered his environment instead of it mastering him–
He conquered something bigger than any event that day and well,
I guess his momma did too!  

Let me win, but if I cannot win, let me be brave in the attempt -Motto Of The Special Olympics

photos by Kellie Schmieder

A Smile is Worth a Thousand Words!

A Smile is Worth a Thousand Words!