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

Who's This New Kid???

Since our return from Disney, Josiah has been an amazing little boy!!!

First up...no more baby food...

We had struggled to transition Josiah from baby food to 'people' food.  It's not all his fault, it's partially ours.  Face it, baby food is easier (at a certain level). Baby food is more costly, but less time consuming.  Josiah had been sick for the two weeks leading up to Disney.  He favored baby food while he was sick. Admittedly so, we preferred it too.  Then we went to Disney, and his sickness was still questionable.  He seemed to have developed a secondary lactose intolerance (I must admit, I'm not sure what that means, how long it lasts, or when to know it has ended).  As a result, we stopped feeding him yogurt (the one food he ate consistently).  While in Disney, he ate (almost exclusively) baby food.  It was safe & kept him well.

We arrived home and, honestly, just decided to stop feeding him baby food.  Well, low and behold - it worked.  Suddenly, Josiah was eating people food (and was happy about it).  In the three weeks we've been home, Josiah has eaten pot roast, beef stew, chicken, onion rings, hamburger helper, mac & cheese, and the list goes on.  He hasn't touched baby food in weeks!  We are ecstatic!!!  Just last night, I noticed the secondary gain....Josiah's orange tint has finally disappeared!!!  I thought it would never be so!!! 

Here's Josiah, after eating a piece of birthday cake last week.  Look at the smile on that face!!!

 

Second up...mister curious...

The day we arrived home, I thought Josiah seemed more curious....as if he was willing to explore more.  Well, I don't know what that trip to Disney did - but it is amazing.  Josiah is an exploration monster.  Luckily, he doesn't risk safety.  He explores things in a whole different way now.  He challenges himself to do things.  He explores things in a whole new way.

This has led to climbing up and down off the couch and beanbags.  He thinks sliding down a slide (face first) is hysterical!!!  He is such a curious and fun little boy.  He makes my heart melt (and sometimes causes my hair to turn gray) lol.  Here are a few of his recent explorations...

Third...suddenly signing...

We have used sign language, with Josiah, from birth.  Knowing language may be difficult for him, we hoped sign language might help.  He has always seemed to understand sign, but not usually willing to utilize it.  Since our return, he has been signing "be nice," "more," "all done," "eat," "sleep," and "phone."  He's blowing them away at speech therapy, too!  Mister stubborn is suddenly makes sounds (and signing) on demand.  It is absolutely amazing!!!!  I'm in awe of this little boy :)

Fourth...about to walk...

Josiah has been walking with his toy walker, for months.  Occasionally, he takes a few independent steps.  Well, last night was mind blowing!!!  He stood up in the middle of the room & took 4-5 small steps.  Then he stopped (while maintaining a perfect stand), regained his balance, and continued.  He took another 4-5 little steps, stopped, regained his balance, and repeated one last time.  He took 4-5 little steps and lunged onto his Elmo bed with a resounding laugh!  He knew what he had done!  In excitement, I texted his physical therapist D.  I told her what he had done.  She texted back.  "Don't tell him I know.  He'll stop doing it if you mention me."  I truly laughed out loud.  I'm not sure she's wrong, by the way....

Lastly...scores...

I stopped looking at scores from Early Intervention, and the like.  I don't like them.  They do not accurately reflect my child's capabilities!!  With that being said, at play group parents are asked to fill out a questionnaire (of sorts).  It assesses a child's overall development (and where they fall in the spectrum).  Josiah's scores have always gravitated towards zero.  No matter the age, his low muscle tone inevitably biases the score.  It's ok and doesn't bother me.  Last week, we arrived at play group & received the results of the last assessment.  In all categories, he fell ON THE CHART!!!  He "needs improvement" in all but social - but he actually fell on the chart!!!  He didn't score zero's, like he had previously.  Our little man, is catching up!!!  So much so, that I keep asking "Who's this new kid?"  :)

"Don't underestimate me.  I would never do that to you."

Back Into the Swing of Things

I'll chalk last weekend up to a complete loss.  C and I felt like we were in coma's for much of the weekend.  Monday approached like wild fire.  I was glad J1's teacher had sent work along for him to complete while on vacation.  Although he had completed everything, our vacation extension meant he had missed several extra days of work.  I knew he was going to have to catch up quickly.  J2 is in preschool, thus no homework.  He was, however, going to have to jump right back into full swing.  Josiah hadn't had therapy in three weeks (2 weeks in Florida, and sick the week prior to leaving).  Monday was going to be a test.

After getting J1 and J2 off to school on Monday, we headed to play group with Josiah.  It was like we had never left.  Over the weekend, we noticed that Josiah seemed more independent.  He seemed to be exploring more.  In Florida, the tile floors made exploration difficult.  We thought maybe he was just happy to be in environments conducive for small children.  Here, in play group, he was definitely acting more independent.  He was crawling up (and down) the stairs to the climbing structure.  He was suddenly taking more risks (but not dangerous ones).  Little man....

Monday afternoon brought out the EI worker (whom Josiah hadn't seen in weeks).  She was accompanied by her supervisor and Josiah's PT (an occasional co-treat is not uncommon).  Well, that didn't go so well.  For the next 60 minutes (or so), Josiah cried like nobody's business.  He didn't want to stand.  He didn't want to walk with the walker.  He simply cried.  He sobbed.  Yes, it was not his finest hour.

Tuesday morning, he returned to Speech & OT (after his three week hiatus).  What a difference a day makes.  He stunned the speech therapist.  He made more sounds than ever.  He signed more, all done, yes, and no.  The speech therapist was elated (he is usually quite stubborn with her).  OT was just as successful.  He used the same signs with her.  He even said "bye-bye."  OMG!  This kid is amazing!!!  Thursday's sessions were about the same. Josiah is vocalizing more sounds.  More exciting than that (for me), he is finally using some signs.  

After feeling like we were never going to be able to wean him off baby food, we have finally accomplished the impossible (or so it seemed).  We have gone the better part of the week without baby food.  Josiah has happily eaten pork chops, rice, pot roast, potatoes, mac & cheese, tuna fish, chicken alfredo, onion rings, bread, and beef stew.  His first week without baby food!!!!  Yay Josiah!!!!

I feel like Josiah has turned a huge corner this week.  He is vocalizing more.  He is FINALLY signing (even if just a few words).  He's imitating a LOT!!!  He's more engaged in active play.  And, he's eating big people food.  He never ceases to amaze me.

I love my life <3.

 

They are Just Numbers.....

"They are just numbers."  "Try not to get caught up in the numbers."  These are the responses you get when you're mind is reeling over assessment results....

Last Wednesday, Josiah had his "6-month" assessment.  The "6-months" delineates the time since the last eval (at one year).  For this review, early intervention utilizes the "Michigan" evaluation tool.  The test yields numerical results in each category.  The numbers reflect the developmental age of your child, in each category.

Please note that Josiah is currently 18 months old.

Last week's test yielded the following results:

Adaptive: 10 months

Personal/Social: 14 months

Communication
     Receptive: 8 months
     Expressive: 7 months

Motor
     Fine: 7 months
     Gross: 8 months

Cognitive: 9 months

I had been looking forward to this evaluation.  I couldn't wait to "see how far he's come."  I mean, he only starting sitting in January.  He began crawling in February.  I couldn't wait until the numbers reflected his great progress.  If he wasn't 18 months old, the numbers would've have seemed so discouraging.

It's hard to explain how a mother feels with something like this.  I see Josiah every day.  I know how much he "knows."  I see how "smart" he is.  He is an inspiration to me, every day.  Then, I see the numbers.  Cognitively, he's a nine month old.  He certainly doesn't seem like a nine month old.  He's 'so much smarter than that.'  That's the Mom speaking.  Josiah is just so much smarter than the numbers reflect.

Motor - 7 and 8 months.  As much as the numbers are disappointing, I can also see the truth in them.  Josiah's older brothers were sitting independently at 6 months.  They crawled by 8 months.  They were walking at 11 months.  Conversely, Josiah was able to sit independently at 15 months.  He isn't walking yet.  He's almost 19 months old.  I know this is common.  I know this is not 'unusual' in the world of extra chromosomes.  We were prepared for this.  We know this, intellectually. 

As parents, we just want it to be different.  We do but we don't.  We don't want to change a thing about Josiah.  He is perfect just the way that he is.  We just want things to be as easy for him as they have been for his brothers.

We want so much for him.  We want so much for our boys.

In the end, I know Josiah will meet all of the developmental goals.  I know he will accomplish amazing things.  I just need to remember that it will all come in time, in his time, in His time.

Here's to perseverance, and patience.

"Patience is waiting. Not passively waiting.  That is laziness.

But to keep going when the going is hard and slow -

that is patience."

Author unknown

31 for 21 Blog Challenge: DAY THREE: When Will He Walk?

Josiah will be celebrating his first birthday this month.  The first birthday is always a fun one.  With our other two boys, we reminisced over the many milestones each had accomplished over the first year. 

Jesse had stopped nursing at 10 days and was primarily bottle fed.  I had returned to work when he was three months old.  He had started sprouting teeth at 3 months, was sitting at 6 months, and walking at 11 months.  At his first year check up: he weighed 22 lbs, was 31 inches in height, and had all the teeth of a 2 year old.

James had stopped nursing (via self-weaning) at 10 months.  I never returned to work.  He cut his first tooth at 5 months, was sitting at 7 months, and was walking at 11 months.  At his first year check up: he weighed 19 lbs, was 29 inches tall, and had all the teeth of a 1 year old.

Josiah is 11 months old.  He had his first hospitalization at 2 months.  He became a heart hero at 3 months (surviving open heart surgery).  He cut his first tooth at 8 months.  He has mastered head control.  The skills to master sitting are progressing by leaps and bounds.  He rolls around but cannot yet crawl.  He just reached 17 lbs and is approximately 28 inches tall.  He has a total of 4 teeth. 

Carl and I don't see Josiah as being 'delayed.'  We know he has yet to reach the developmental milestones of his peers.  We also see beyond what he has yet to accomplish.  Josiah is an amazing little boy.  He is the most social, engaging, little guy.  He loves to smile, laugh, and be included.  He loves attention.  He loves being a part of the family.

This morning, I remarked that he would be celebrating his first birthday soon.  I also remarked that his big brothers were walking by 11 months.  That thought made me a little sad - a feeling I don't usually have when it comes to Josiah.  I know he will be able to accomplish anything and everything.  Sometimes, I just need to remind myself that it might take him a little longer.

Recently, we had the boys on an outing.  Two women kept remarking about how cute Josiah was (the older boys were playing nearby).  The thought went through my mind, "Can they tell that he has Down Syndrome? or Do they just think that he's cute?"  Either way is fine.  I guess I'm trying to prepare for the day (and there will be one) when the topic is raised.

Like we've said from the beginning, Josiah is not a regret but a gift.  We don't pity him or our family.  We are humbled by the joy our boys bring to us on a daily basis.  I know someday, Josiah will be judged by someone.  Perhaps we'll be judged (again) for keeping him.  Perhaps he'll be made fun of.  I don't look forward to those moments but hope I can use them to teach others about the blessing that is Josiah.

Yes, I have the moments where I ask myself "When will he walk?"  "When will he...."  In the end, it doesn't matter.  He'll do all those things.  Our older boys will meet all of their next milestones.  They are only young once.  We will enjoy every minute of this time.  Once they meet a milestone, we can never go back.

"Slow down and enjoy life.  It's not only the scenery you miss by going too fast -

you also miss the sense of where you are going and why"

- Eddie Cantor