Fall

When you grow up & continue to live in New England, September 1st means "Fall."  Summer is over.  Already, cooler air creeps in. 

On September 1st, Jesse started the 3rd grade.  James & Josiah had one more week before starting Kindergarten and preschool, respectively.  We were ready for another great year.  That week, we attended preschool orientation, and Kindergarten screening/orientation.  We enjoyed a trip to the playground, and had a last hoorah play date.  The boys had sleepovers and we spent Labor Day at a local water park - we had the time of our lives.  Then the younger boys started their new school year.  With all three back in school, we returned to our normal routine.

The middle of September brought on the school's fun run!  It was a riot!!!!  The boys loved the PTO-sponsored fundraiser.  Carl & I cheered them on, from the sidelines.

Josiah got glasses and hearing aides.  We were doing all we could to give him the very best advantage.  All was perfect!!!  The boys got haircuts & looked wonderful for school picture day, at the end of September.

Carl and I were planning for fun things ahead.  We started talking about Fall trips to the local theme park.  We looked forward to our annual trip the pumpkin patch.  We talked about birthdays, Thanksgiving, Christmas, and how much fun we'd have in Disney, early next year.

Josiah's IEP meeting was fantastic.  The parent-teacher orientation, at school, was awesome!  We liked all the teachers.  We liked philosophies, we were thrilled about everything!!!

It was a picture perfect start to the school year.  It was picture perfect, until it was no longer.....

The noun "Fall" represents a season.  When used as a verb, it can bring on a whole new meaning.  It can be scary.  It can change everything.....

Time

Time is a funny thing.  It keeps you going.  It provides joy and laughter, pain and tears.  Sometimes you have too much.  At other times, not enough.  I suppose the same is true with life.

Once upon a time, I wrote for the therapeutic value.  I wrote for the enjoyment.  I wrote because I had something to say.  I wrote when I was at a loss for words.  Then the writing slowed but not because any of the motivators had vanished.  Rather, it seems TIME to write had vanished.

As I'm realizing that nearly a year has passed since my last post, my mind is reeling with the knowledge of all that has transpired since.  As I try to compartmentalize the events of 2015, I shall endeavor to share my year's journey with you.

Josiah completed his first year of preschool, in June.  His 5 year old brother completed his last year of preschool in May.  The oldest brother completed the 2nd grade, at the end of June.  The second half of the year brought cold weather & snow.  It slowly welcomed Spring.  Recess resumed for children.  We felt less trapped. 

The slightly warmer weather made us long for Summer.  By April, we looked forward to summer vacation and the increased opportunity to "make memories" with the boys.  We began planning a trip to Disney (to commence in 2016).  We couldn't wait for less school, more fun.

It was during these months that we became friendly with another local family.  They have a daughter who also has Down syndrome.  She is 6 months younger than Josiah.  She began school in May.  She and Josiah were placed in the same classroom.  We were thrilled.  Josiah liked her; she liked him.  Everything was simply right.

Josiah bloomed during his first year.  He had made huge strides with fine & gross motor skills.  He was signing more & attempting to speak more.  The older boys had enjoyed a great year.  School was coming to an end.  We couldn't wait for summer.  Time moved slowly but summer was finally upon us.

"Making memories" is what we do best.  Now was the time for fun.

Fall into Winter

As the summer days passed by, we spent our time making memories.  Our oldest attended summer camp, the middle boy attended preschool, and Josiah had his usual fill of early intervention and outside therapies.  With each passing day, we could feel Fall approaching.  Each day, we were one day closer to the change that each Fall brings.  By the third week of August, we frantically tried to slow time down.  We added family activities to the schedule...knowing we would soon be limited by school-year scheduling.  By the last week of August, it had all come to pass.  Summer had ended.  The oldest began 2nd grade.  The 4 year old embraced a new school year, at his preschool.  Labor Day was right around the corner.

As September began, we counted the weeks until Josiah turned three.  The big boys were in school, full time.  Around the corner, big changes were in the air. Josiah was about to start preschool, in the local public school.  Our first IEP was in our immediate future.  Early Intervention was going to come to a grinding halt.  Our way of life, for 3 years, was about to change.  Though exciting, we were feeling the nervous energy that often accompanies anticipation.

By mid-Sept, we had received notice of the scheduled IEP meeting.  I didn't know if I should be excited or dread it's very existence.  I had heard nightmares about IEP meetings, attitudes, different perspectives where no one is willing to work together, etc.  The morning of the IEP meeting finally arrived.  Carl & I arrived to the school with Josiah's EI worker & an advocate from the local DDS office.  We were, truthfully, prepared to be unimpressed.  

I was never so pleased to be proven wrong!!!!  The IEP meeting was amazing!  They had considered everything & then some!  Josiah's needs had already been considered.  Special accommodations had already been thoughtfully planned out.  They were offering him 7 therapies per week, in addition to his classroom work.  They offered him an extended school year so that he can attend in the summer.  They had already included sign language as a method of communication (as Josiah has few spoken words). 

I asked only for two things: 1.  Potty training - it was included before I could finish speaking.  2.  A communication log - which was implemented on day one & has been a constant!  We walked away impressed.  We walked away knowing that we were blessed!  This was the right place for Josiah.  We didn't need to fear the unknown any longer.

As we prepared for Josiah's first day of school, we said our goodbye's to Early Intervention.  We said goodbye to the Early Intervention Child Coordinator who had been with us from the very beginning.  It was a strange sensation....to be actively involved with a team of people, then they simply stop coming.  Strange, strange, indeed.

Before we had time to mourn the loss of our friends, we quickly met new friends as Josiah's Physical therapy was moved to an outside agency (where he was already receiving OT and Speech).  Josiah transitioned nicely to all the changes.  Before we knew what was happening, it was the first day of preschool.  He was up, fed, dressed, and outside waiting for his bus.  We could hardly believe our eyes.

 

And so it began, mid-October.  Josiah attended his first day of preschool.  There were a few tears, the first two days of school, then he was off and running.  He attends school 4 days per week, 2.5 hours per day.  During those four days, he received OT 2x/week, PT 2x/week, and Speech 3x/week.  Two afternoons per week, he attends therapy at an outside agency....OT, PT, and Speech, each day.  That's 13 therapies per week!!!  Unbelievable!!!

So, four days per week, this Mama finds herself with 2.5 hours to get errands done, clean the house, do laundry, change beds, etc....without interruption.  By lunch time, each day, Josiah happily arrives home.

This has been our life for the past 10 weeks.  Meanwhile, we've celebrated family birthdays, enjoyed Thanksgiving, survived a stomach bug, and now excitedly prepare for Christmas.

This Mama finds herself tired....blessed, but tired.

 

Enjoy every single moment, as they cannot be repeated

Therapy Overload

Being proactive, we called Early Intervention before Josiah was born.  We called again about one week after his birth.  He was six weeks old when the assessment took place.  Starting at six weeks, he was seen weekly by the case manager, physical therapist, and occupational therapist.  Three appointments per week, for the first year-and-a-half.  Then speech was added.  Four therapy appointments per week, at home.

Shortly before his second birthday, the occupational therapist moved and we had an issue with the speech therapist.  Knowing he had one year left with EI, and then would age out, we switched occupational therapy & speech therapy to an outside agency where he would receive both services twice weekly.  Two appointments at home, four appointments outside the home.  Of course, playgroup was additional.  These didn't account for 'extras' - trips to Children's, the DS clinic, pediatrician, or dentist.

Given the last three months (with C being ill), this Mama is finding herself on therapy overload.  C used to take Josiah to his outside appointments (two days per week - two therapies back-to-back).  I would attend to grocery shopping and the like.  All of that has changed as C can no longer lift Josiah.

Thankfully, C drives the two 'big' boys to/from preschool/camp each day, while I stay at home preparing Josiah for his day.

Some mornings roll around and I think to myself, "I just can't do this today."  Yes, I have cancelled therapy due to my own inability to carry on.  It doesn't happen often, but happens more than I like to admit.  I week, I simply decided to take the week off.

Josiah is such a little trouper as I carry him from appointment to appointment.  He arrives with a smile, every time.  He works hard at everything he does.  I sit, exhausted, watching him.

He ages out of EI in 3 months.  That will end the home visits.  Physical therapy will get added to our list of outside appointments - six therapy sessions per week.  He will receive some services at school.  We will continue to take him to playgroups, when scheduling allows.

Sometimes, I am tired just thinking about our schedule.  I feel like we're on therapy overload.  I wonder if other parents feel that way too..... 

Change is in the Air

Kids grow so fast.  Josiah will be three in October.  That means he ages out of Early Intervention (EI).  His services (physical therapy) will be switched to the rehabilitation center where he received OT (occupational therapy) and Speech.  EI will also prepare Josiah for transition to the public preschool in town. 

We were determined to send Josiah to the same preschool that his brothers attended.  EI (early intervention) assumed the path of the public preschool.  After all, Josiah has Down syndrome and is granted an automatic spot in their program.  We didn't know a lot about the program but we initially railed against it.  It wasn't personal.  I guess we didn't like the idea of something being presumed for our son.  We didn't like the idea that he would be 'singled out' because he has an extra chromosome.  His big brothers didn't go there; why should he?

Acting on intelligence, and not simply emotion, C & I decided to take a tour of the public preschool classroom.  We were so glad we did that!!!  We brought an entourage with us that day.  C & I had Josiah as well as my best friend (who is a preschool teacher at another location).  The EI worker met us there, as well.  The assistant principle was taken aback by the amount of people with us.  The fact that we brought Josiah (something they encouraged me not to do) also may have thrown her.  However, if he was to attend there - we needed to see how he would react to the environment.

We were accompanied to the preschool classroom and asked to sit against the wall to 'observe.'  After about ten minutes, Josiah couldn't contain himself any longer.  He wanted down.  He wanted to play.  The lead teacher graciously allowed him to join a small group of children who were playing with blocks.  He sat in the group, like a pro.  He stacked blocks, was mindful of other children, and even used a few signs to communicate his wants and needs.  He fit in just fine.

We watched small groups of children move from 'station' to 'station,' always with a teacher.  The classroom was organized; Teachers were amazing.  We sat stunned.  Suddenly, our feelings about preschool changed.  There are only 10-12 children per classroom in this public, integrated, preschool.  We couldn't tell the 'peer children' from their counterparts.  

We walked out of the school with the realization that what we 'plan' isn't always the best plan.  This preschool program quickly proved to be the best option for Josiah.  When you are able, and willing, to be open to possibility - God shows you the best path to take.  He certainly had His hand in this one!

The teachers have since been to the house, to observe Josiah in his natural environment.  We learned that the teacher has two deaf children, of her own.  She is fluent in sign language and knew every sign Josiah used to communicate with her, even his approximations.  We were thrilled!!  Josiah took a liking to his new friends.

When the school year resumes in September, the IEP meeting will be scheduled.  Josiah will attend preschool Monday-Thursday, two-and-a-half hours per day.  A bus will pick him up at home, and return him after school.  He will receive some services at school, in addition to those he receives at rehab.  

I am nervous about sending him 'out' in the big world but have faith that he will grow and learn.  I know it will be good for him.

C & I will suddenly find ourselves with 3 hours per day where we are kid-free.  That will be a new experience for us.

In the meanwhile, we will spend our summer experiencing life with our children.  We will excitedly prepare for what's to come.  We will continue to be grateful for the many blessings in our life.

Staycation at the Grandparent's

We spent a total of three nights, four days, at my parents house.  Monday, we went for a drive.  24 hours after a fresh snowfall usually makes for beautiful driving.  Of course, rain greeted us.  Nonetheless, we drove around, went grocery shopping, and returned to my parents house.  Tuesday, C drove home.  Power had been restored.  Cable and water, however, were still on hiatus.  So, we stayed another night at the grandparents home.  No one minded.  Wednesday, C returned home.  Cable was repaired, water restored.  Meanwhile, back at the g'parents, boys were being bathed, laundry was being done.  For some reason it took the better part of the day to pack for our return home.  After stopping to complete a few quick errands, we finally arrived home around 6pm.  The oldest had missed one day of Kindergarten.  The three year old had missed 5 days of preschool (2 from being sick last week, 3 due to being displaced).  Miraculously, we returned a healthy family.  This Mama avoided the stomach bug; everyone had come through on the other side. 

Upon our return, we hurriedly completed bedtime routine.  Nothing felt routine but we made a valiant effort.  The older boys went to bed around 8pm (about an hour behind schedule).  Josiah followed in his own time.  It felt good to be home.  I was grateful for the accommodations during our time away but was definitely pleased to be home.

Thursday morning came too quickly.  The Kindergartner's project had not been completed.  Therefore, 6am found he and I sitting on the living room floor.  The rug scattered by materials that spilled from the craft box.  A cylindrical oatmeal container would make a perfect mailbox.  By 6:45am, it was complete with red construction paper and spiderman stickers.  By 7:15am, the Valentine's Day cards were made out, and signed, by the six year old himself.  We wrote out the cards for the three year old.  Somehow, during the last 45 minutes, I managed to wake Josiah and feed him (in part).  8:00am came quickly and hurried the two older boys out the door with C. 

As the older boys rushed out, D rushed in to work with Josiah.  It was Thursday...time for PT.  Josiah had an off morning.  He was pleasant, smiling at times.  He did not want to work though.  When D could get him to work without him realizing it, he was fine.  The minute he realized he had been tricked, he fussed.  Silly little boy.  He doesn't appreciate the hip helpers, at this point.  Of course, the more he complains about using them, the more he needs them.  If you don't know, hip helpers are much like spandex shorts but the legs are sewn together at the inseam.  The design prevents Josiah from performing "splits" when he goes into, and out of, the sitting position (a new trick that needs to be tempered). 
Well, the 75 minutes finally passed but not without his (somewhat) constant complaining.  Who can blame him???  I think we were all a bit off....it had been an unusual couple of days.

The were already talking about possible snow for the weekend.  My parents were coming home this weekend also.  We would wait and watch.....

31 for 21 Blog Challenge: DAY THIRTEEN: Birthday Weekend

I spent the first few hours Saturday teaching at the school of performing arts.  It was the first day of the new program - a musical theater program for children with Down Syndrome.  There are only a few students right now, but I know this will grow in time.  Class was fun.  The kids were great!!!!  This is going to be a blast.

I was home by early afternoon, and we spend a Saturday at home.  I keep marveling at Josiah - I am in awe of him; I am in awe of my three little guys :)

Tomorrow (Sunday), we are having a big family get-together for the "October birthdays."  In our family, there are four.  Josiah, my nephew, my aunt (who shares Josiah's birthday, 83 yrs apart), and me. 

Here's tonight's question....should I let Josiah do a face plant in a cupcake?

We allowed both our older boys to have their first taste of cake/frosting on their first birthday.  However, they had both had table food (even if minimal) by the time their first birthday arrived.  Josiah has not had the same experience.  He does very well with food, but it's been (primarily) baby food.  AND, he is still breastfeeding.  The older boys were walking at 11 months; Josiah is still working on being able to sit.  So.....what to do???

Regardless, I'm looking forward to the get together.  We're having another party later in the month.  For both, Josiah will wear his "birthday boy" outfit (a very cute one-piece outfit that James wore on his 1st birthday).

Looking forward, we have C visiting this week (occupational therapy) - she just asked for permission to complete a four-visit infant massage therapy with Josiah - I said yes, of course.  That will begin soon.

Beyond that....it's school for the big boys, EI (early intervention) for the younger ones, first teacher conference, fundraiser, and a trip to a Pumpkin patch with all three kids.  It'll be a fun week :)

It is late and I have a lot to do before the party.  I'm off to bed.  Sleep well my friends.

"Your birthday is a special time to celebrate the gift of 'you' to the world"

- unknown author

Summer's Last Hoorah!

As summer winds down quickly, Carl and I prepare for the changes in our household dynamics.  We find ourselves on a roller coaster of emotion.  "Yay!  They're going to be out of the house" quickly changes to "Awww....our little guys!  We're going to miss them."

Jesse starts Kindergarten tomorrow and will be whisked off every day, via bus, and will begin a lifetime of learning.  He will be gone from approximately 7:45am until 3pm Monday through Friday. 

James starts early preschool this week.  He will be dropped off for a six hour day, five days per week.

How strange it will be. 

Josiah will be the only child home during the day.  What a quiet wonderment that will be!

James's EI appointments have all been rescheduled.  So, Carl and I declared this the last hoorah weekend.

Friday, we spent the day at home - which this Mama desperately needed!!!!

On Saturday, we spent the day yard saling - bargain hunting - and going out to dinner with the boys.

Sunday, we found ourselves (beginning) Christmas shopping at a nearby flea market, one quick yard sale, and a late night run to Friendly's.  Yes, that Jim Dandy was totally worth it!

Today, we're hitting a couple of store sales.  Later, the boys will get their baths.  Backpacks will be loaded for the first day of school.  We will start our new "school night schedule."  UGH!  I can't believe a big yellow bus will take our little boy off to Kindergarten in the morning.

In the meanwhile, it's almost 9am and Josiah is still asleep.  I'm hoping he's ok.  He's been sneezing the last few days.  His left eye seemed a bit teary yesterday.  His nose seemed a bit boogery yesterday.  I hope he's not getting sick.  Keeping my fingers crossed.....  I've checked on his twice & he is sleeping well.  I will let him (hopefully) sleep this off.

Happy Labor Day, my friends :)

Stone Soup 072112: Coming Full Circle

Theater.  What could be better than that?  Perhaps it's not in the minds of most 7 yr olds, but it was in mine.  Theater....reaching for the stars....grasping the unreachable....Someday....

At 18, I attended the American Academy of Dramatic Arts in NYC.  What an unbelievable experience.  I had attended the local School of Performing Arts since it opened (when I was 16), and I found myself teaching there.  How sweet life was.

At 22, I walked away from the local school.  Looking back, I can't find a reason worthy enough to discuss.  I went on new pursuits, for unknown reasons.  

I ultimately achieved a Master's Degree.  That piece of paper remains in a box in my attic.  I have worked in my field for about 15 years, without purpose or cause.
 
I fell in love with my best friend and subsequently married.  Things seemed to be making sense again.  Then, one-by-one, each of our boys arrived.  Each one fulfilling the person I was destined to become.

Even with Josiah, the trisomy 21, the open heart surgery, my life was shaping into perfection.  Then an unexpected reunion.

When my brother passed away in September, I notified my long-lost friend (the director of the local school of performing arts).  We emailed a few times.  Then, a week later, I arrived at my baby shower.  My dear friend was there.

Josiah was born....a started this blog....my friend and I continued to talk. 

About a month ago, we reconnected face-to-face.  She told me that she wanted to start a program for down sydrome children.  What's more?  She wants me to run the program!!!  OMG!

So, in September, our new adventure begins.  In a local, well-established, school of performing arts, we introduce the Down Syndrome Program for children. 

It's amazing how life works.  It's funny how dreams are fulfilled, just not always they way we 'thought they would.'

Life always comes full circle.  I know that's true for me.