Summer of a Lifetime

When school ended, we wasted no time in our memory making.  Josiah was slated to attend summer school 3 days per week.  I was scheduled to teach drama for 2 weeks.  The big boys were signed up for 2 weeks of summer camp at the YMCA.  All would come to pass and a whole lot more.

In the 48 hours following the end of school, Josiah had 5 therapy sessions (2 physical therapy, 2 speech therapy, and 1 occupational therapy).  We visited a playground, a playground/splash pad, and attended a baseball game.  Oh yes, we hit the ground running!!!!  It was summer, at last!

July rolled in quickly.  Josiah continued his therapies 2 days per week.  We had play dates and movie nights.  We celebrated the 4th of July by meeting Josiah's new best friend (the little girl with Down syndrome, who attends school with him) and her family.  We spent a glorious day at a local theme park.  In the evening, we went to a friend's house.  We enjoyed great food, friendship, and fireworks over a private pond.  The boys all played with friends.  The adults enjoyed the fun that friendship affords.

We went to a zoo.  The boys had Saturday swim lessons.  Josiah started his summer preschool program.  Mama started teaching her 2-week drama camp.  The big boys started their 2-week YMCA summer camp.  It was busy but everyone was happy, and at peace with life.

We threw in drop-in playgroups & farmer's markets.  The oldest resumed karate (though it was short-lived).  Carl started iron infusions and found more energy.  We attended a benefit dinner for the 5 year old's preschool teacher, who had since been diagnosed with Cancer.  Carl & I celebrated our 9-year anniversary.  We enjoyed a few date nights.  Josiah had an audiology appointment & his hearing came into question (again).  It was believed hearing aides may be beneficial so we started considering the option.

August was quickly upon us.  I was still teaching.  The big boys were still attending summer camp.  Josiah was attending summer preschool 3 mornings per week & therapy 2 afternoons per week.  Yet we continued pushing our goal - making memories with our boys.

We went to a water park with a great local group - all families have a child with Down syndrome.  We attended family night at the YMCA.  The boys attended summer Birthday parties & back to school parties.  They loved summer camp so much that they were signed up for an extra 2 weeks.  It was proving to be the summer of a lifetime!!!

We revisited the local theme park, playgrounds, splash pads, and filled in many days with love and laughter.  As the last week of August approached, our busy schedule started to slow.  My 2-week drama camp ended.  Josiah completed his summer program.  4 weeks of summer camp came to an end.

Josiah had a sedated CT scan to rule out possible physical causes of his hearing issues.  There were none.  The CT scan did note an unusual density to his cerebellum - something that will be further examined with an MRI.  Meanwhile, we actively pursued the hearing aide option.

The former preschool teacher lost her battle with Cancer.  We said goodbye to her, crammed in a field trip, celebrated my Dad's Birthday, and quickly welcomed September.  A new school year was about to begin.  Josiah was moved to a toddler bed (from his crib) and has slept like a big boy every night, since! 

September 1st: The first day of school!  Summer was over.  We were disappointed but looked forward to what a new school year would bring.....

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.....

Thankful For a Rainy Day

We have survived 5 days of school, 4 colds, 4 EI visits, 3 trips to the pediatrician, 3 flu shots, 2 on 'cough medicine' (ie honey), 1 fever, 1 ear infection, 1 preschool assessment, and 1 antibiotic.  This is just since Sunday!  Good Grief!  We need this weekend to recover.

We had planned an outing for today, but given the illnesses of the week (mixed with today's rain) - we are staying home today.  I need to get caught up on some much needed cleaning.  Tomorrow is our first Buddy Walk - I am very excited!  I'm just hoping the rain cooperates with us.

Monday, I cancelled Josiah's EI visit with K.  I think that might be the first appointment I ever cancelled.  That was the day we took Josiah to the MD due to a fever.  On Tuesday, we were back at the pediatrician's office for scheduled flu shots for all three boys.  They were troopers!

Wednesday, Josiah met with C (occupational therapy).  He did a great job, as usual.  Thursday, he met with D (physical therapy).  This wasn't an 'all-star' week (like last week), but he did very well none-the-less.  Josiah continues to prove increasing strength, stamina, and determination.  He is sitting (with support), and can stand (with even more support).  He squirms all over the place when on the floor - I suspect crawling isn't too far away.

It's been a busy, yet non-exciting, week.  It was exhausting, actually lol.

Stealing moments for myself seem difficult, at best.  Even now as I write, I struggle to get the thoughts in my brain transformed into words on paper.  The 2 year old stands at the top of the stairs, steadfastly, screaming "MOMMY!"  How 'Mommy' needs a break! 

Sometimes it's best to give in.  I shall cut this short and attend to my family.  I will attempt to find some quiet time later to share more with you.

Happy rainy Saturday everyone!

Falling Back into the Swing of Things

Now that the kids are getting older, I realize how busy life can get in September. 

We celebrated a 'first' anniversary - remembering the life of my oldest brother.  He made choices we didn't understand.  In September of 2011 he died, on the streets, at the age of 50.  Although I don't miss the nonsense, I do miss him.  I miss my brother.

Our oldest began Kindergarten.  Here, the children attend full-days.  He takes the bus to and from school every day.  He leaves at 7:40am and arrives home at 3:10pm.  He is doing well.  He is already recognizing more letters and is proudly demonstrating math skills he has learned.

Our middle boy began early preschool.  I wish the transition to school had been as easy on him.  I don't know if it's been harder on him, or us (watching him struggle).  We're in touch with the school, the administration, and the teachers.  He's already turned a corner.  We're waiting patiently to see if things improve further; we hope they do.  (Early Intervention) EI continues to work with him on his speech.  One recent, and major, accomplishment has been his willingness to say goodbye to his binky (except at night).  This, in itself, has led to an improvement in speech.  We're hoping for major strides in the next three months because in December he will age-out of EI.

Josiah continues to amaze us!  We finally had his 'six' month pics taken.  He was 10 months at the time, but who's counting.

Josiah continues to receive two EI visits per week.  One from K (his child care specialist); the other from D (his physical specialist).  Every other week, C arrives for OT (occupational therapy).  In the coming months, he will begin receiving speech therapy.  The progress he is making is astonishing (pics below).

Our first Buddy Walk is next week.  We are tremendously excited about it.  I'll be sure to tell you all about it.  We can't wait!!!!

Next month is sure to be a great month.  October!!!!  It's Down Syndrome Awareness Month.  Josiah will also celebrate his first birthday.  Amazing stuff!!!

Finally, for those of you who enjoy pics.  Here are some recent ones (mostly taken during Josiah's EI sessions):

Here, he demonstrates his ability to proudly hold his head high.  His arm extension is wonderful!  Belly time has become fun for Josiah.  Catching him on his belly is actually rare these days as he loves to roll now.  Gates have become his best friend (as they constantly save him from getting into forbidden areas).  It's no longer uncommon for us to turn our back, only to find him on the other side of the room mere moments later.

The task of sitting is an obstacle anxious to be overcome.  Josiah is starting to understand its importance....if only the balance would cooperate.  With a toy carefully propped, he does quite well.  It's only a matter of time before he's sitting independently :)

"Look, Mom!  Only one hand!"  It's a good thing that K is holding on.  Josiah doesn't realize that his ability to fall over is greater than his ability to sit lol :)

This isn't the best pic of Josiah's face but it clearly shows that he is now tolerating weight-bearing on his legs/feet.  This is a huge step!!!  It's very exciting.

Josiah is learning what it feels like to bear weight on his knees.  This kid is such a trooper.  He is manhandled frequently and tolerates it like a champ :)

This was taken yesterday as our family enjoyed a much needed-day-to-ourselves outing.  Fun was had by all.

Updates coming soon: Weight and MD stuff.....

October's goal: Daily blogging..... :)

Hello Rice Cereal and Crazy Appetite

April vacation is officially over.  Jesse is back to school.  Our EI friends are back.  Playgroups are running.  Things seem back to normal; apparently in my old age, structure is a good thing :)  I already feel less stir crazy and more focused.

I talked to KF this a.m.  She was clearly not disappointed in Josiah's weight gain.  Left to my own devices, I wasn't either.  However, I still get anxiety riddled over how the MD may react to a less than ideal weight gain.  We know that the MD would like to have seen twice the gain, but given everything - we think Josiah is doing great!  He is alert, oriented, responsive, engaging, and active.  He also grew three inches in the past two months.  The MD remarked that his height places him in the 15th percentile.  His weight places him on the "0" percentile.  When asked, "of the Down Syndrome chart?," the answer was no.  The computer only charts on the 'regular' chart. 

So, at 6 months, he's 11lbs 7.5oz.  He's 25.5inches tall.  I decided to check the Down Syndrome growth chart for boys.  Josiah's weight places him in the 10th percentile.  His height places him in the 50th percentile!  I think I'll start carrying this chart with me to the MD's office :)

On Thursday, the MD had given the go-ahead to start rice cereal.  I'll be honest....I've dragged my feet a little on this issue.  I had asked the question (can we start cereal?) then, of course, regretted having asked.  I even told KF that I was probably going to delay the endeavor.  Of course, then there are time when you ask yourself "why wait?"  Last night proved to be one of those nights.

After breastfeeding Josiah, and giving him two bottles, the child seems insatiable.  It was as if he decided to make up for all of the slow weight gain, in ONE night.  So, out came the rice cereal.  I made it thicker than usual (but not as "paste-like" as suggested by the MD).  Josiah did great!!!!  Given his extremely high palette, I wasn't sure how well he would do.  As is typical for Josiah, he made me wonder why I had questioned his ability......  I lost track of how much, in all, he consumed but it was a lot for one little boy.  Needless to say, when he fell asleep - he slept soundly all night.

I had to wake him this a.m. around 7am....the breastfeeding had gone too long - he needed to eat!!!!  And so he did.  Despite the fact that my milk supply was GREAT this a.m., he proved still hungry!  So, out came the rice cereal again!  He enjoyed his bowl of cereal & the remainder of a five ounce bottle.  After a few good burps, he was in his swing & dreaming about the things babies dream about :)

James has been a crazy little person this morning.  I've somehow managed to get a few things done.  In a while, we'll pack up the little ones, pick up Jesse (and his friend) from school, and we're off to playgroup #1.  Hopefully, I can squeeze a quick errand in after playgroup. 

Tomorrow is another playgroup for James.  Thursday, EI returns for Josiah.  That will end the appointments for the week, I think.

Meanwhile, my non-smoking venture has been a complete success.  It's been three weeks as of last night!  It's been amazingly easy :)

Everyday, I continue to be thankful for everything, and everyone, in my life <3

Easter time 2012

We packed up on Saturday morning, and headed out to meet our new friends.  We gathered at the family's home.  Carl & I met a lot of great folks - all whom have a child with DS.  We met a lot of great kids.  Lunch was fabulous!  The company was wonderful.  The Easter Egg Hunt in their beautiful back yard was a smashing success.  The Easter Bunny even stopped by for pictures, etc.  Jesse and James had a riot collecting their Easter eggs.  They played on the climbing structure, with various toys, enjoyed rides in a wagon, and hugged the Easter bunny.  After a few hours, we said good bye to our new friends and headed home.

Jesse and James were soon off, again, to their grandparents house.  There, they spent the remainder of the day cooking goodies for Sunday's get-together.  Carl and I spent most of our day cleaning and preparing for Sunday.

Sunday went smoothly.  Everyone came to our house.  We all had a nice day.  The older boys had fun with their Uncle T & Auntie A.  Josiah did what babies do....ate, slept, and enjoyed being cuddled :) 

On Monday, K returned to work with Josiah.  As usual, he enjoyed seeing his 'girlfriend.'  He happily worked with K for the duration.  Josiah is demonstrating more and more strength every day.  He turns his head from side-to-side, more readily now, while on his tummy.  His determination continues to be obvious.  He is such a little trooper.  After his session, it was James turn.

K met with James for his session.  C joined the team this week.  C will be working with James, weekly, on his speech.  K will continue to work with James, weekly, as well.  James loves the extra attention.  K is met with squeals of delight, each time.  I imagine C will start to experience a similar tradition soon :)

Tuesday had us all returning to the afternoon playgroup; the boys received their "Raising a Reader" book bags.  They were very excited.

James had his other playgroup this a.m.  Carl and I had planned on bringing James and Josiah to that.  Unfortunately, Josiah didn't cooperate with feeding this a.m.  So, at the last minute, Carl & James left for playgroup alone.  I stayed home with Josiah.  I'm still not sure why he was refusing to nurse.  He had nursed on one side earlier; the second side, he didn't want any part of.  I finally made a bottle which he quickly consumed.  He then fell fast asleep.  He slept for 4 hours.  When he awoke, all was fine again.  He has fed well for the rest of the day and evening.

Tomorrow, D comes to work with Josiah.  James will be enrolled in preschool, for next year.  Then, we are attending a family night at Jesse's school.  Friday, we have no plans.  I hope to keep it that way....it'll be a much appreciated break.