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."

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 EIGHTEEN: Textures

Textures can be a problem for children with Down Syndrome.  Some kids with DS have a hypersensitivity to taste, temperature, and textures.

Most kids with Down Syndrome are born with low muscle tone.  Low muscle tone, along with differences in the physical structure of the mouth or tongue, plus other medical complications (such as heart defects, etc) can contribute to the delay of solid food introduction.  Additionally, research indicates that kids with DS take longer to progress through the stages of chewing development.

There is a great chart indicating motor/oral motor milestones for feeding development.  It can be found here:
http://www.fdhkids.com/developmental_milestones/feeding_development.html

Here is a simplified list of feeding developmental milestones:

Before birth, the baby:

•

Begins to develop the sucking and suckling reflexes around 36 weeks.

At birth to three months, the baby:

•

Demonstrates many reflexes to protect his/her airway.

•

Responds to stimulation in and around the mouth.

•

Turns his/her head toward the nipple when the caregiver strokes the cheeks.

This signals that the baby is ready to eat.

•

Consumes breast milk or formula using a nipple.

•

Coordinates his/her breath with two to three sucks of liquid before swallowing and

breathing.

At three to six months, the baby:

•

Brings both hands up to clasp the bottle but needs assistance holding it.

•

Consumes rice cereal or pureed fruit and pureed vegetable baby foods.

•

Eats from a small infant/toddler spoon during feeding.

At six to nine months, the baby:

•

Holds the bottle independently.

•

Cleans the spoon with his/her upper lip.• Eats pureed meats and a variety of pureed baby foods.

At nine to twelve months, the baby:

•

Demonstrates lip closure while swallowing liquids and soft solids.

•

Begins to self-feed by using his/her fingers to grab small foods. The baby may

attempt to eat small, soft dissolvable solids (i.e., soft crackers and small cereals

like Cheerios™).

•

Begins to experiment drinking liquids from a sippy cup.

•

Begins to consume mashed table foods.

•

Drinks out of a sippy cup and attempts to hold the handle independently.

•

Begins to drink through a straw.

At twelve to eighteen months, the toddler:

•

Coordinates sucking, swallowing, and breathing patterns for longer

sequences.

•

Begins to eat finely chopped table foods.

•

Bites through crunchy foods such as cookies and crackers.

•

Moves the food in his/her mouth from side to side as he/she chews.

At eighteen to twenty-four months, the toddler:

•

Feeds him/herself using a spoon but may still need assistance.

At twenty-four to thirty-six months, the toddler:

• Consumes a variety of liquids and solids through straws and open mouth cups.

•

Uses a spoon to scoop soft foods while feeding him/herself.

•

Independently moves toward fine tuning all feeding skills.

At thirty-six months to five years, the child:

•

Progresses toward chewing and swallowing advanced textures (meats, fried foods, whole fruits, etc.) with close supervision by a caregiver.

•

Begins (with close supervision) to use a fork to stab food.• Drinks from an open mouth cup with no assistance.


What I'm excited about is that Josiah currently falls in the 9-12 month milestone category.  They delay is more on me, than Josiah.  I haven't been as quick to introduce some things as I should have.  Having this list is nice.  I know what to work on next :)

"Perseverance is not a long raceshort races one after another."

- Walter Elliott

31 for 21 Blog Challenge: DAY SIXTEEN: Do We Decide the Outcome?

I read a story recently of a young lady with Mosaic Down Syndrome.  She had battled leukemia and, now at the age of 9, is in remission.  Here's the thing....until she was diagnosed with leukemia, she didn't know that she was rocking an extra chromosome.  That makes me wonder what role parental/provider/professional expectation plays....  It must make a difference.

If this young lady was thought to be 'normal,' she was treated as such.  There were obviously no overt signs of delay or red flags would have been raised much sooner.  It wasn't until a medical problem confirmed an extra chromosome, that anyone knew otherwise.

I have friends that have children with DS.  Some kids are coddled, as if still a baby.  Some, not so much.  I wonder what ultimate role that plays in outcome. 

We expect Josiah to be not unlike our other boys.  Outside of lower muscle tone, he is just like them!  I know he's still young so we don't yet know his capabilities.  However, we never question his capabilities.  We know he can do anything he wants, anything he sets his mind to.

A provider recently said to us "well, kids with developmental disabilities can get this until they are 7."  She was referring to a service we didn't want.  More strikingly, she referred to Josiah as a kid with developmental disabilities.  He has Down Syndrome.  I don't see him as a kid with developmental disabilities.  I think how things are phrased are important. 

This all may sound very petty.  It may sound as though I'm arguing semantics.  It's just my opinion....

"Labels are for filing.  Labels are for clothing.  Labels are not for people."

- Martina Navratilova