An introduction to School!

It's hard to believe that our 'baby' Jacob turns three TODAY!

Turning three means many mile stones for our little boy. Not the least of which is the fact that he transitions from Children's First, the therapists he's been using since birth, to the care of our school district.

I've spent months fretting over the fact that my little boy will be picked up at our doorstep by a giant school bus, whisked into the arms of strangers, and off into an unknown school with new, much older and larger classmates.  It's been nerve wracking to me to allow my toddler to branch out into the big new world on his own. No longer will I be driving him to his therapies, signing him in, washing his hands, walking hand-in-hand to circle time, opening the door, and making sure he is settled before I scurry away to revel in my 2 hours and 15 minutes of relative silence twice a week.  Now, I will be waving to him from my porch as they lift him into the bus (he is too short to climb the stairs himself) and close the big glass doors behind him.  From the time he leaves my home until the time he returns into my arms, Jacob will be gone a whopping 4 hours and 15 minutes, four times per week.  Thursday will be his last day with everyone he's known all his life, and on Monday, he will be thrust into four times more work/play time than before.

Honestly, I've spent months freaking out about this scenario.  Finally, last Friday, I got the opportunity to go to Jacob's new school, meet his therapists and his teachers - at the Middle School.  Crap.  Really?  The middle school?

As soon as we hit the parking lot and I unstrapped Jacob from his car seat, he was pulling at my arms, trying to make it to the sidewalk.  His face lit up as if he knew where we were and he wanted to explore.  The second his tiny little feat hit the asphalt, he was in a run, heading for the sidewalk, which he stepped onto before running again.  I hustled to keep up with him, and herded he and his big sister through the entry way filled with glass doors.  He giggled loudly to hear the echo of his voice in the brick walls and linoleum landscape, causing several faces to turn to the source of the noise and break out into impulsive smiles at his infectious grin.  As we waited for our escort, Jake ran from chair to chair to pile of papers, to the window, then more papers, systematically exploring every square inch of this new space with interest.

Soon Shannon arrived with a grin on her face, only to be greeted with an excited grunt from Jacob.  He managed to obediently hold my hand until we were half way down the hall before all the brightly colored doors, lockers, and artwork got the best of him. He yanked his hand from mine and ran as quickly as he could, giggling and yelling with excitement with his big sister hot on his trail.

After a few moments, we managed to wrangle both children into the correct room.  When Jacob crossed the threshold into his new learning environment, he didn't even stop.  Instead, he increased his cadence from excited to hyper as he darted from toy to toy before settling on the items he preferred the most.

After almost an hour long meeting with the staff, it dawned on me that Jacob had been relatively quiet in his play and discovery time of the classroom.  Success!!

But it wasn't until it was time to leave and he was running away from me, tears streaming down his face because he didn't want to leave, that I realized that all those fears and concerns that had eaten away at me for the past several months were a waste of time.  Jacob is going to be juuuuuust fine.  The only thing that's going to upset him in this transition? Coming home to mamma.  :)

Stretching the Limits

This week my son turns three.  THREE!!!  How can that be?  It seems as if just months ago we were in the hospital fighting for his life, trying desperately to get him to gain the few precious pounds he needed for his heart surgery.

Now, we're beginning to transition from our early-intervention program, which consists of 2 hours twice a week to pre-school through the school district, which is 4 hours four times per week.

This move entails testing to see how far he has progressed in the three years of early-intervention.  It also allows the school district an opportunity to see where he's at developmentally, and how far he must progress in order to reach the capabilities of 'normal' children his age.

When I arrived at my 'meet the staff' meeting where we would establish his IEP (Individualized Education Programs) for the next couple years, I came prepared to be told that my son, Jacob, needed more therapy to keep up developmentally with the 'normal' kids.  And, although these well-meaning individuals come equipped with degrees and years of experience working with children with disabilities, none of them had met Jacob.  All they knew about him was based on predispositions and what was written on paper.

When I sat down at the table for our meeting I was faced with six staff members who would be caring for my child in one capacity or another for the next 2-3 years.  Each of the ladies were wonderful, personable, and truly had a desire to better Jacob's life.

The first person to speak was Jacob's new Physical Therapist.  She took out his test results based on the Peabody system and proceeded to tell me that there were many things they'd be working on with my son to get him 'up to speed'.  Then she asked me,

      "The test says he walks forward and backward.  Does he run?"

     "Yes,  he was running in the hallways on the way into class.  And he's really quite fast.  I need to work to keep up with him."

     "Oh."  She flashes a confused look on her face, and writes something on her paper.  "Does he walk up stairs?"

     "Yes.  Yesterday he was walking up the stairs one foot per stair unassisted.  He walks down the stairs with the help of the railing, putting two feet on each step, before proceeding to the next."

     "Really?"  the therapist comments, before scribbling on her paper again. "How about jumping?"

     "Take him out to the parking lot and he'll jump all over the parking blocks without effort.  He gets more air than his 4 year old sister does when she jumps."

     "It says here that he can throw a ball 3 feet."

     "Actually, he throws it across the room.  I'm trying to keep him from breaking windows right now."

What this therapist had forgotten is that although Jacob has Down syndrome, he is also a boy...a child.  And like every other child in this world, he has a personality and his capabilities differ in some degree from every other child whether that child has Down syndrome or not.

In this case, he just didn't like his previous Physical Therapist.  Not that she was a bad person; their personalities just clashed, so he refused to test for her for nearly a year.

I had to explain to the new Physical Therapist that Jacob is strong as an ox.  He can do pull-ups on our kitchen table, opens doors, runs, jumps, and does all the things a normal little boy does. In fact I'd hazzard a guess that he can do more.

I had a discussion with the Occupational Therapist about the fact that Jacob tested within the limits of 'normal' in his progression.  The previous OT suggested NO OT for him. At ALL.  This is absolutely unheard of for a child with Downs because they typically have low muscle tone and have a hard time with fine motor skills.  I ultimately agreed with their suggestion that he continue OT because I'd noticed that he cannot work his fingers independently for sign language, and it would ensure he doesn't fall behind in the future.  Besides, can you really have too much therapy?

Even speech therapy came with a few surprises for the ladies.  Up until 2 months ago (that would have made Jake 34 months old - nearly 3), Jacob could not/would not say a single word.  Part of it was due to hearing difficulties - he's had 3 sets of tubes, finally the T-Tubes they put in 2 months ago have stayed and we're seeing progress - and part of it was out of sheer stubbornness.  Now, in the past 2 months, we've seen a massive break-through in speech.  He now knows more than 30 signs, and has voiced 12 words.  This week alone he's said three new words.  That revelation elicited gasps and ooh!'s from the staff. This is in addition to the fact that he points to anything he can't sign or say, shakes his head yes and no, and is perfectly capable of making his wants and needs known in one way or another.  The progression is coming fast and furious!

'So what is the moral of this story?' you ask.

It's simple.  These ladies came into our meeting expecting, based off of predispositions and the statements of others, to see a child who was completely different from the one I presented them.

I, on the other hand, have never had a child with disabilities before.  And I refuse to assume that because of an extra chromosome, he is destined to be an un-thinking, barely-functioning part of society whose role will never be any more important than bagging groceries at the local grocery store, or being the 'happy boy'.  For that reason, I do not give him limits.  In fact, I try to defy them any chance I get.

When they told me that the earliest a child with Downs had ever learned to walk in their program was 16 months, I worked with Jacob until he could walk at 14 months.  When he failed to progress with his PT evaluations at age 2, I went out and bought all the toys needed to help him reach his missed goals.  It was that day, after 2 hours of play time and watching him achieve each of his 'missed' goals that I realized he was just fine.  He was merely stubborn.  Just like all the rest of my children.

That's not to say that I expect Jacob to be the next Einstein, or a neurosurgeon, or an 8th grade English teacher.  But when there are people with Down syndrome in the world who are world-renowned musicians, mayors of cities, music teachers, and a bevy of other roles in society, I have hope.  I remember that my child, though different, is still important, and has a purpose here on this earth.  The range of abilities for people with Downs syndrome is just as broad as the range of abilities of those without an extra 21st chromosome.  Our job as parents, caretakers, and service providers, is to take those abilities or preconceived notions and to give our children a chance to defy them.

If we give our children an opportunity to defy their 'limits' we enable them the chance to experience a better life for themselves.  Society once thought those with developmental disabilities should be institutionalized.  I still believe we are limiting our DD population by not expecting more of them.  It is my hope that we will treat each person as an individual, challenge them to stretch and progress to the best of their abilities, and only then, be satisfied with the end result.

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