Category / Down Syndrome ASD

by Dicentra

“Let me Be Brave in the Attempt”

 

Today I was getting ready to take Tucker on his walk and he noticed the words on the back of my t-shirt.  Tucker doesn’t really read, so I read it for him. “Let me win. But if I cannot win, let me be brave in the attempt” ( the Special Olympics Motto) As I finished those words my voice cracked and the tears filled my eyes-We had just finished a busy weekend of Special Olympics ceremonies, swimming competition and celebration. This was his 3rd year of competition, each year has had its own baggage of challenges and each year we inch our way into making it easier for him to deal with the sights and sounds of crowds and confusion with our favorite support tool: Young Living’s Vetiver essential oil; this year was no different except my gut was not in knots, full of fear, of how he would react.

Tucker would be competing in the same 3 events he had competed at in regional competition, but this time competition was in the Olympic sized pool instead of a regular high school swimming pool.  My concern was that he does not understand the depth of the pool and this year he would be swimming without the flotation device.  Tucker didn’t win a medal in his 25 m swim in the big Olympic sized pool, in fact, he technically would have been disqualified for this event.  We aren’t really sure of why he stopped during his  25 m swim, the start was rushed–maybe his goggles weren’t right? Who knows?  But one thing we do know,  he figured out he could not touch the bottom of this pool as he can in the pool they usually practice in.  He stopped and his head bobbed under at one point  and this over protective, deeply invested Mamma’s  heart sank and we were sure if he was going to make it across without assistance. He swam over to the lane divider and grabbed it for a moment, rubbed his nose and then continued on. The coach signaled one of the other coaches to be ready and the lifeguard watched ready to jump in and I hear a voice in my head  saying: “come on Tucker, just keep swimming!”  and I cheered and yelled and waved my arms like an insane, overexcited crazy woman as he swam and safely made it to the finish line of the edge of the pool all by himself.  This is one of those times where that Special Olympics motto rings SO true and warms a momma’s heart:  He WAS Brave!

special olympicsoath

Tucker is not a fast swimmer yet. He continues to be challenged  getting his kick and his arms to actually propel himself forward, but today his win was not about speed, not about style, it was about being brave during a time that could have put him into a panic, he took a deep breath and kept on swimming. Special Olympics continues to teach him many things and offer him ways to grow  and this year has proved no less of value as the first two.  No,  He did not  get a gold medal, but sometimes, just as in real life, we learn the greatest things  when we don’t come in first. We grow the most when things aren’t the easiest, but when they are the hardest; when we have to pull it all together and push and keep going with all  our might, like the little engine who could, despite your fear, despite everything else, you push with your will and you make it to the finish line and THAT, in itself, is the victory.  The “gold  medal”   is the feeling in your heart when your  “I think I can, I think I can”……becomes: I DID IT!!!!  and….” I thought I could, I knew I could,  I knew I would!!  iknewicould

 

by Dicentra

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.

by Dicentra

Tools

     There was a time a few years ago when I would have feared an appointment day like today.  I would have stressed, my gut would have a pain all morning as I would drive the hour-long drive to the appointment. I  would never consider taking my son by myself, but would have insisted on reinforcements of a sibling or a care provider. I would never have let him sit next to a door, if it could be avoided, to prevent him from opening the door while the car was moving or trying to get out while stopped at a light.  I would always have tools with me at all times;

tools

A few tools

tools that would assist in making the appointment go as well, to use as a diversion.  An iPod for music, iPad with a video or pictures for him to look at, his favourite stuffed toy, pizza, soda, chips.  I could not make stops or run errands on appointment day; that would be a set up for a  disaster. There were times I would drive 45 minutes home from a doctor’s appointment and have to turn around that evening and drive back into the store to do errands.

        I remember one time when he was much younger, he broke the window out of our van with his foot while I was driving, glass shattering.  He has grabbed hair and arms and faces of his siblings while they were buckled up in the seat next to him,  I look back on those times and my heart sinks; I remember the stress and frustration we lived with.  I can  look back now  see that my son was dealing with so much fear himself. Confusion and anger welled up inside him. He was unable to communicate his fears and he was unable to understand the situation.
  I wish I had discovered Young Living essential oils many years ago, perhaps I could have avoided some of those situations, those melt downs.  Or when the situation fell apart and my neck was tight with knots of frustration, my jaws gritting tight, I would have  had  a tool to use for myself to ease some of my own anxiety.  It was a difficult time, I relied on much prayer. It is a funny thing today to face an appointment without such stress.   No fear that my son will run from the building, hit the doctor or kick someone in the face. We have made huge progress here.  Essential oils have made a difference in our lives. Are they magic? No. But in a world where the only option given to you is pharmaceuticals where it is questionable if the benefits outweigh the side effects, essential oils  are definitely a blessing. Not a fix all, but a tool to throw into my bag of tricks- it just happens to be the tool that has made a huge difference for my son, and for myself?  An answer to many prayers. 

vetiver

 

by Dicentra

The day my brain failed me, but vetiver oil did not!

I am what I refer to as a : “down Syndrome mom” you know, the ones you see standing on the side lines at a parade, or escorting and assisting them onto  rides at the fair, in the aisle of the  grocery store, holding the hands of their adult  children, who have down syndrome, helping them do the things that they love, buying the things that they need,  integrating them into the communities and protecting them from harm; Today I failed in part of this attempt.

I have told my son for 2 weeks, we would be watching a concert in the park.  One  of his favorite  child entertainers, Tim Noah, was doing a summer concert close by.  He looked forward to it. He counted down to it.  My son has few words, but  the words he would say to any one who would listen were about this concert: “four more days,  Park, music, the wow, wow wobble woo”, as I tried to help interpret his excitement over the concert.  The  day finally arrives.  We have listened to Tim Noah music everyday for months . My daughter took the day off work to go along. My sixteen year old  son comes along to help watch his six-year-old brother.  I even call dad to see of he is working near to the park to join us and I had invited a friend to meet up with us there.  We procure a handicapped parking space and unload quickly in hopes  to get a good spot in front of the stage.  I realize there is no one on the stage. The park lawn is empty and  families are concentrated around the water area. I’m suddenly filled with this slight panicky feeling of the  inadequacy of my menopausal brain.  I begin making  excuses in my head trying to justify why there is no one there. The concerts are in a different part of the park, maybe  moved into the building, or maybe we just arrived really early  ( yeah right! I never get anywhere early). I wander  into the library so my son can use the bathroom and then I see it;  The summer concert schedule-and the concert was yesterday. The concerts  are  on Tuesdays not on Wednesday. 

I think for a moment I am going to cry. I am so disappointed for my son. I am so angry at myself and frustrated. How can I be a mom who for the past 18 years get my son to nearly  every doctors appointment, therapy appointment, have blood tests and ultra sounds done and in place with results sent into the doctor before the appointment, but I can’t remember the right day of  the Tim Noah concert? What is happening to my brain? Have I lost my marbles? I have to make my son understand this. So I grab him and get into his face  and say “Mom made a BIG mistake, there is no music concert today, I am so sorry! ”  I tell him we can go have a picnic, but the concert is all done.  I pull out the vetiver oil and roll a drop on the back of his neck. He gives me a hug and a kiss. He is suddenly in tune  with my disappointment.  He is nodding as if he understands mom really messed up and he is trying  to show me that it is ok, we switch gears to a picnic in  The park with our friends, after I confess my big mom “fail” to my friend and her children.                                                                                                                                                                                                                                                                                                                                                      
Two years ago  something  like this could have turned into a stressful, out of control  situation. I could have found myself in the bathroom with a confused, angry son, refusing to leave or possibly darting off into the crowd or even the streets in frustration like a tornado, his lack of balance, the only thing slowing him down. But not today he was able to redirect and transition.  He played on the park equipment and he walked around the lake. He was hot and sweaty and his feet hurt from his orthos being a bit too tight. But he remained pleasant and calm and enjoyed the day. I  am still really mad at myself for missing one of the most important things to him of the entire summer, but it was an opportunity for me to marvel  at how far we have come.  It was a reminder of just how much a drop of vetiver has meant in my son’s ability to deal with life when it happens or when mom’s disorganized brain makes a mess of calendaring something on the wrong day. 

http://timnoah.com/

by Dicentra

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)

by Dicentra

The Special Gift

 

gift

I recently had a birthday and a memory from the past flooded into my mind. Not of balloons, gifts and  celebration, but of a quiet moment on my birthday years ago.  Birthdays come and birthdays go, but special memories remain as precious treasures in one’s heart. This one memory is from 12 years ago.  My son Tucker was just starting to walk and his words were few and his challenges in life were many. He was my teacher that day and the giver of joy.

 

THE SPECIAL GIFT

This year for my birthday

I received one of the most precious gifts

I have ever received in my life.

My six year old son came into my room with a big grin on his face,

gave me a hug and said excitedly: “HAPPY BIRTHDAY!”

Now I know that may not seem too impressive to most,

but this was the first time he had ever said those words to me.

And not only did he say them together clearly,

but he really understood that it was Mommy’s birthday;

He had categorized my birthday into his little brain,

along with all the other birthdays he had experienced~

THAT, in itself deserved a party!

It brought tears to my eyes and is one of those moments

that are written on a Mother’s heart and never forgotten.

Some of life’s most precious gifts come in the smallest packages.

They aren’t’ the things we put on the mantle, or wear on our fingers.

They are the little things that are said, moments that are shared,

time spent just caring for one another.

Sometimes we forget the simplicity of that among-st all of the glitz of the world~

Some have just never figured it out; they are just too blind to see.

But I am thankful for my little “blessing in disguise”,

who not only blesses me daily with a very special love,

but also teaches me to keep my heart and my eyes wide open,

because blessings of love may happen at any moment!

forget-me-not-heart.jpg

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