A Moment of Inspiration

To say that life has been crazy around our household for the last several years would be an understatement. 

Since Jacob's birth, we have struggled with his heart surgery, immediately followed by 3 broken legs - each leg occurring on a different family member, and all seeming to break within a week of the last person's being healed.  Then there was the loss of my mother a year ago to cancer and my father 11 months later to complications from diabetes.  In the past 3 years, we have never had more than 7 days of peace before the storms of chaos kicked back up again and we found ourselves struggling to keep our heads afloat and care for our family as best as we can. 

After my father's passing, the waters calmed, and we've had more than a month of blissful peace.  As I've stepped back and begun picking up the pieces of our fragmented lives, I've had a chance to see where the chaos has affected us most.

Although children are resilient, I've seen the affects most noticeably in my little ones.  Rather than rushing to my father's side the moment K.C. came home from work, I've been blessed with quality time with my children (and cleaning my home! - thank goodness for small miracles!).

It quickly became apparent that I get out of them as much as I put in.  And recent months have been a dry spell for poor Jacob.   I've seen Jacob make more progress in the last month verbally than I've seen in nearly a year.  He went from being able to do 12 signs in February and virtually no sound coming from his mouth, to now being able to sign nearly twice that much, babbling all day long, and occasionally trying his hand at a few small words like 'mom', 'dad', 'yay', and 'ball'.  Yesterday he even tried to say 'yes'. 

The last several weeks he's been exhibiting signs that he's interested in potty training, which was something I didn't think I'd need to address till he was four.  I talked to his Pediatrician and she reminded me that even though Jacob has Downs syndrome, we should not limit him.  Instead, give him opportunities to succeed. 

Sufficiently humbled, I've committed to beginning potty training as soon as the older kids get out of school in June.  (Wish me luck!)

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And on that leap of faith,  I wanted to share an article to the most amazing man who, by any standards, would be considered remarkable.  What  makes this individual awe-inspiring is that he, too, has Downs syndrome.  Here's a teaser about my newest inspiration:



"Award winner and world traveler, Sujeet Desai is an accomplished musician and a motivational speaker who was born with Down syndrome. He plays seven musical instruments and has performed with world-class artists like Kenny G, Candy Kane, Joe Whiting and Quincy Jones, graduated from high School with honors before he finished his post secondary study at the Berkshire Hills Music Academy in Massachusetts. Since the early 2000’s, he has performed in over 40 states in the United States and in 14 countries around the globe. He is a recipient of numerous national and international awards including “The Presidential Award”(Singapore), “The Quincy Jones Exceptional Self Advocacy” award and “The World Down syndrome Day” award(Cape town , Africa).  "


Sujeet Desai was asked to share a few travel stories with us. He willingly shared these.

“I have been travelling worldwide for over 15 years performing and speaking. Each trip I have many funny stories happen. Below are 3 stories, “Said Desai. “Years ago, I received award from the President of Singapore. I was supposed to play for three minutes before receiving the award. For that performance, I got dressed up in a Tuxedo with a special new tux jacket that my mom ordered custom made from India. There were over a thousand people waiting for arrival of the president and security was very tight. Security guards were carrying guns all around us. I was waiting with an escort to welcome the president and walk with him down the aisle to the stage to perform my piece and receive the award. I was very nervous with guards holding guns behind me. Just minutes before the president arrived, a guard asked me to take off my jacket. I did not want to do that but he did it anyway as that was there was rule that no one would wear jacket. They wanted to avoid anyone carrying suspect weapons in their jackets and also the president had decided not to wear a jacket that event so it could be casual. I did not understand everything at the time. I got very upset that they took my jacket away and I knew my shirt was not nicely tucked around my Cummerbund. There was no time to fix it and my mom wasn’t allowed in our secured area. I got very nervous and did not want to perform. The big moment came when the President arrived, now with even more guards surrounding him with rifles. He shook hands with me. Put his arm around my shoulder and smiled. Suddenly I stop shaking, I felt very comfortable because the President looked like any other person and I was not scared of him anymore .I played the theme song for 'Mission Impossible.' Every time I see the pictures my shirt sticking out, I think of all that happened at such an important moment of my life. (Another time) When I perform international I have pack all my performance items very carefully; still weird things happen like recently when I visited Romania. I packed my tuxedo shoes. But one was my shoe and the other was my brother’s shoe, two sizes bigger than mine. We had only hours left before I would need to go on stage and we did not know of any store selling these shoes and we did not speak the language either .We were already tired after my rehearsal and had my three instruments and luggage to drag along. A kind man took us from store to store translating to the store staff what we were looking for, dragging our luggage while walking on the road, and at times in a taxi and also on the subway train for more than six hours to finally find a replacement pair of tux shoes. Every time I wear those shoes, I remember the history behind them.”

Currently, he performs regularly in community churches, nursing homes, senior centers, hospitals to help bring joy to those who live away from home and family. This 30 year old ‘uniquely abled’ man enjoys independent living in his own home in upstate New York although he spends plenty of his time outside his home; traveling worldwide to do inspirational solo music performances and self-advocacy workshops.

Besides his love of music, Desai enjoys martial arts and has a 2nd degree black belt in Tae Kwon Do. But his accomplishments don’t stop there. He has won a gold and silver medal in the Special Olympics World Games '99 in Swimming, Alpine skiing, Cross-country running and Bowling. It is no wonder why he is a media darling and his life has been chronicled in two documentaries as well as several dozen TV and newspaper interviews including being featured by The Wall Street Journal, New York Times, “The View”, “20/20”, “Oprah Winfrey”, and WCNY. Recently, Desai was honored by NDSS as National spokesperson for Down syndrome which was published in 40 magazines nationwide as “THE TRAVELER” as part of a Down syndrome awareness campaign. In 2010, this talented young musician was selected as an Ambassador by Down syndrome International (London HQ). Sujeet Desai explained that he is most proud of his 14 international awards for self advocacy and how he has become a role model for others. But he is equally as proud ofhis athletic accomplishments including the medals at the Special Olympics and Belt Belt designation.


His travels has given him the opportunity to meet and perform for some notable celebrities including Eunice Kennedy Shriver, Anthony and Timothy Shriver, John McGinley, Kristi Yamguchhi, Nadia Kamunich, Bart Connors, Scott Hamilton, and Jim Kelly to name a few.

“My mom and my dad both trusted in my abilities and offered me every opportunity to learn new skills and most of all loved me no matter whether I learned or did not learn. That increased my self esteem and confidence to believe I can do anything if I put my mind to it. Just like anyone else. People usually do not believe in that a person born with Down syndrome can live a good life. They do not respect them for who they are. However, my parents never did that. They did not treat me differently and gave me every chance to learn just like they did for my older brother,” stated Sujeet Desai.

Desai has become a role model and has brought inspiration and hope to individuals born with disability, their parents, educators, and the services providers. Sujeet’s motivational workshop “My Story: How to improvise life with multiple intelligences” sends many messages across the world that given opportunities for their abilities individual with disabilities can “Make It Happen!” And his music is more than just an entertainment; it’s educational, inspirational and focused to make everyone’s personal mission possible. To learn more about Sujeet Desai and hear his music, please visit his web page www.sujeet.com or on Facebook at http://www.facebook.com/sujeetmusic.

By Diana Rohini LaVigne

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Once again, I am humbled by the strength and tenacity of the human spirit.  I hope you find his story equally has inspiring. 



Susan

 

2 Year Anniversary! How Time Flies

I nearly fell out of my chair a couple weeks ago when my 17-year-old posted on Facebook that it was Jacob's 2-year anniversary for his heart surgery.

Had it already been 2 years?  Really?  I feels like it was just a few months ago. But then I began watching my little boy and all he can do, and realize that yes, indeed, our little boy is growing up!

Jacob is now 2 years, 4 months and 3 days old, but whose counting?

Aside from his heart surgery 2 years ago, he has only had two surgeries - twice putting tubes in his ears, one of those included removing his adenoids.  We've been pretty doggoned lucky with our little boy considering all the things that CAN go wrong, but haven't. 

After 2 solid months of crying, he finally took to his on-site therapies and is now pushing me out the door so he can play with his 'girlfriend'.  I'm told they spend much of their time giving each other hugs and playing with one another whenever the opportunity arises.

After months of agonizing about whether or not Jacob was going to communicate with us in ANY way, he has finally found the need to communicate via sign language about a month ago.  He now knows 12 signs and is FINALLY beginning to babble a little bit. 

Our physical therapist claims that he is lagging physically in things like throwing a ball, playing catch and walking backward.  Jake just looks at me and smiles because we both know he's an expert at basketball, soccer, and throwing tennis balls at his big brother's eye.  Likewise, if he finds my cellphone laying around, he's able to grab the phone, run backwards at break-neck speed to make sure I'm not following, then turn mid-stride to sprint forward to safety with phone in hand, giggling all the way in his mischievous little voice.  Yeah.  We're not too concerned about this one.

Don't let those big brown eyes fool you!  He's a crafty little one!!!  Stay tuned for new Jacob stories.  The little rugrat is on the loose - and giggling every step of the way!!

Love,

The Allreds

Jacob @ 23 Months

So Much has happened in the last several months.  It's hard to believe that it's already been 6 months since his 1 year anniversary for his heart surgery.  But what an exciting 6 months it has been.

Although life has not been without its ups and downs over the last several months, I'm finally beginning to get a grasp of what my new "normal" life is going to be.  It's a life filled with therapy visits, doctors appointments, sickness - big and small, giggles, celebrations of the little things in life, and absolute bliss as I enjoy watching my little boy learn and grow.  I am often amazed at how little his Down syndrome affects his personality, and how he truly is just a little boy - albeit a LITTLE little boy. 

In recent months, we've had two visits to the hospital emergency room.  The first, in June, was because he woke up rasping and wheezing for breath.  I called the Dr. and, in light of his medical history, they sent us directly to the Sacred Heart Medical Center's emergency room.  NOT the Valley Hospital emergency room, which was 1 mile away.  Nope.  We got Sacred Heart - a specialty hospital that was a 30 minute drive away.  Luckily, we got there and they quickly discovered that it was some phloem in his throat.  Nothing to worry about.  Go home.   Woohoo!!!!

Then, the week before Labor Day, Nathan was sick with stomach aches and lots of time in the bathroom.  Inevitably, Jacob got it.  However, it didn't just stop with stomach aches and diarrhea.  Soon the stool turned reddish brown (which resulted in a doctor's visit verifying there was, indeed, blood in his stool).  Then, by the next day, it was all mucous and blood - no stool.  THAT was another emergency room visit, which resulted in an ambulance visit, to Deaconess Hospital just down the street from Sacred Heart.  Originally they seemed to think that he had Inception, which is where the large and small intestines telescope into one another.  It's something that can be life threatening.  However, after 3 days in the hospital, a few visits from the specialists, and lots of cultures, it was determined that Jacob just (relatively speaking, of course!) had Salmonella. 

So, we were sent home with the instructions to keep him at home and away from people until he no longer had diarrhea.  Sadly, Courtney got it shortly after, and that set off an entire month of quarantine of the little ones from the rest of the world. 

Now, all is right medically, and Jacob is finally back into his therapy sessions and Courtney is back to loving her "Courtney Days" every time he goes to therapy.

We recently had his 6-month assessment with all of the therapists and it's not looking good.  Of course all the time he has spent sick and out of therapies has not helped much.  Rather than being 3 months behind developmentally, he tested as being 9-12 months behind.  So each of the therapists gave me a list of new goals for Jacob for the next 6 months, I immediately went out and bought a bunch of items to help him work on his goals at home, and by the end of the night, he'd already achieved four of his goals. 

I began to think that I was BRILLIANT!!!!  Look at all the progress I'd done with him in just one night.  Then I realized.  Um, nope.  The boy was just to stubborn to perform on command for the ladies.  He could do it all along.  He just didn't WANT to when they asked him to.  Doh!!!

Beyond life as a boy with disabilities, I've had such a pleasure enjoying Jacob as just A BOY.  He may be almost 2, but he still looks like he's only 1 because he's so small!  So I'm often underestimating him.  Not a day goes by when I'm amazed at how quickly he can run (and I mean RUN) from disaster area to disaster area, tearing things off the shelves, emptying the entire Tupperware drawer all over the kitchen and living room, climbing the couches to get to things that I thought were out of reach, grabbing the toilet paper and TP'ing the house 3 times over, finding where I'd 'hidden' my phone and dialing grandpa at 7 a.m. while he's still asleep, and so on and so forth. 

Occasionally I get tired of running after him and cleaning up his messes and just sit and watch the chaos unfold, or play games, or just cuddle with him and Courtney.  I'm sure KC comes home and wonders what the heck I've been doing all day to have the house end up in such a mess.  But having had so many close calls with Jacob has made me realize the importance of the little things.

Having lived the first three months of his life without a smile on his face, has made me revel in his giggles when he's tickled by his daddy.  Working so hard to get him walking at 14 months, helps me to marvel at his speed as he's running full speed away from me in an attempt to keep me from grabbing my phone back from him.  All those months of feeding tubes remind me that his constant choice to fling ALL his food onto the ground and then eat it off the ground instead of his plate is small compared to the achievement that comes with being able to EAT at all! 

I love to watch the devious gleam in his eye when he tries to play 'keep away' from me with his favorite ball.  I can't help but crack a tiny smile when he flings himself onto the floor in a temper tantrum, trying to express himself when he still cannot talk and has so few signs to use (but that's only because he's too stubborn to sign!).  He's such an expressive little boy who can communicate everything he wants to say with his facial expressions, pointing, and other nuances of communication.

Even at such a young age, I KNOW life with Jacob will never be dull.  It will never be mundane.  And it will never be a waste of time. 

Life with Jacob is pure, unadulterated joy!