Welcome to our journey!

If you are new to our blog, you may want to start with Beginnings - Part 1 and Part 2 to catch you up to speed on Jackson's arrival on December 11th, 2010 (yup, 12/11/10).

Wednesday, July 1, 2015

Brothers

Summer is here, we are in a new house with plenty of space for the boys to play both inside and out...I've been off for a little over a week and while the days are not restful, its been great being home to work on the house, work on learning our new school system (hello Canvas), and work on some skills with Jackson.  The best part so far is witnessing Jackson and Grayson's blossoming friendship.




Grayson was convinced the chimp was going to eat his soft pretzel.


Jackson's bus driver gave us this bus/slide in hopes that he would play with it and remember them.











Jackson did fine until the water sprayed him...then it was downhill from there.
 Grayson only wants to sleep in Jackson's bed now.  So bed time has become a bit of a battle lately.  I think its adorable, but I think Jackson would prefer to have his bed to himself.  So...soon we will have Grayson's own big boy bed.


During mealtimes we are doing a program called Gemiini. Its a program originally designed for children with autism, but has been found helpful in kids with DS.  We are giving it a shot this summer.  We decided to start from the beginning even though Jackson does have some words/phrases.  Its recommended to view the videos twice at mealtimes (so 3 times a day x 2 for a total of 6 viewings a day).  They aren't lengthy and easily fit into a meal sitting.  I'm getting pretty tired of viewing the same thing every day for multiple days, but both boys like the videos and both participate while watching them.  I'm looking forward to progressing to the next video (we are on QSL 2.0 - which is animals/sounds Part I).  The videos involve tons of repetition of words/phrases while zooming in on the mouth for the formation of the words and  incorporates ASL (american sign language).
"What does the bear say?"






Grayson has been actively seeking out Jackson's attention.  And Jackson is participating with Grayson more often than not lately.  Sometimes they have their own little language that Grayson seems to use to get their interaction going.  Its pretty bizarre and ultimately is some form of yelling/gibberish followed by a raspberry.  Its funny, but can drive you crazy after awhile.

 Even when they aren't directly interacting, there is a lot of side-by-side playing...most of the time in Jackson's room.   They have gotten pretty physical with  each other which I ultimately chalk up to being boys.  Most of the time its harmless fun.



sour cream face



 Grayson's big boy bed arrived and became a quick play toy for them.





Today we took a ride over to Freedom Park.  It was definitely a nice park...only downside is its not enclosed.  I'm a big fan of parks that are gated since Jackson "elopes".  I only had to race after him twice so that he didn't get hit by a car (luckily there was not a ton of cars driving through, but both times he was booking it there was in deed a car coming).  

I am impressed by the moms who feel extremely comfortable with their kids hanging from any part of the playground...I am not saying this to be judgmental...I am seriously impressed (and jealous since they could sit and monitor from afar while I had to try to control my urge not to be everyone's spotter on the playground...seriously, I had to call over to one of the moms and ask if it was okay that her son who looked to be Grayson's age wanted to climb across the monkey bars...turns out it wasn't, but I didn't know what was the proper etiquette when her son started crossing them while I was standing there).  These kids were completely fine and were quite the little monkeys...I'm just used to Grayson who is sooooo not a daredevil and Jackson whom I am constantly monitoring just in case he gets off balance while on the playground.

This picture makes me laugh.

Jackson loved the moving bridge. 

And then there was Grayson. 




The boys have been doing a lot of mimicking of each other.  Jackson will mimic Grayson's weird language that he's come up with and Grayson wants to do whatever Jackson is doing.  He is sometimes Jackson's shadow as if he's playing a game of follow-the-leader.  For example, if Jackson steps on the grass, Grayson steps on the grass.  If Jackson sits down, Grayson sits down.

And let me tell you...I love it.  I love everything about their developing connection and ultimate bond that only siblings can have.

Saturday, March 21, 2015

World Down Syndrome Day

Today is World Down Syndrome Day so what better day to post about awareness and inclusion for individuals with Down syndrome.


A couple of months ago I was approached to reach out to someone who was given a prenatal diagnosis.  Their baby was going to have Down syndrome and they were devastated and strongly leaning toward termination.  I said I'd be glad to talk to them to share our experience and let them know how awesome our son is.  In a world where there is a lot of outdated information about individuals with DS, I wanted to make sure that they had the most accurate info so that they could make a more informed decision.  I was scared.  I wanted to share our experience and show how meaningful not only Jackson's life is, but our life as a family with a child with DS.  I wanted the family to see the value of Jackson's life.  I wanted them to choose life...


I reached out to our DS support group (Cheseapeake Group) and asked for advice.  What should I do?  What should I say? They gave me ideas and offered to send the family updated info so that the family could make a more informed decision.  They wished me luck.

I reached out to the mother and left her a message.  Shortly, I received a response from the family member that had contacted me for help and was told that they had made up their mind and would be going forward with termination.  They did not want to talk.

Adam was on a business trip and got home later that evening.  The kids were already in bed and I was in bed (grading papers).  He knew I had been asked to reach out to this family and wanted to know how it went.  I could not help but cry as I relayed the outcome.  I was sad for the baby who was not going to get a chance at life simply because of their extra chromosome but I was also sad because there are still so many people who see individuals with DS and see something wrong with them, a defect, something not deserving of life..that indirectly this family didn't see my Jackson as someone who was worthy of life.  He had no value to them.





I write this post, not to judge this family.  I don't know them, so I don't know their true reasons.  I can guess that a lot of their decision was based upon fear.  I get fear.  I was scared once too.  They may have even allowed misconceptions/misinformation direct their decision.  Or perhaps they truly did not want that baby because they just simply did not want a child that would have special needs.   I even get that...not many people would ask for a child with a disability.

Each week, I sit next to families during our private therapy sessions.  Yes, some of them are there for minor things, like strengthening a leg after a broken ankle.  But many are there for PT or OT due to delays due to DS, autism spectrum disorders, or perhaps, cerebral palsy.  I'd be willing to bet that they didn't "want" their child to have special needs...but I'd also be willing to bet that they felt their child had value in this world.  I've spoken to a few families of children with CP.  Both of these families had to wait months to years to find out the reason why their child was delayed in reaching milestones.  Lucky for us, we knew what we were working with.

I had a student a few years ago who was hit by a car while crossing the street.  This left him in a wheelchair and with brain damage that affected his learning.  He was not born with special needs, but due to this accident, he will live the rest of his life with them.

Bottom line is - there's no way to determine the future for any of our children.  They are ours and as parents we do what is best for them in hopes that they will have the skills to one day be independent (special needs or not).







Yes, Jackson has special needs.  He has delays.  He requires therapy (PT, OT, and speech).  But he is so much more than a child with DS. He knows his letters and numbers. His vocabulary is booming and he's working on saying sentences. He is beginning to recognize sight words including his name. He loves Thomas the train, the movie Airplanes: Fire and Rescue, and the Cars characters (see a theme here?). He loves tickles and hugs and has a smile that is contagious. He loves taking baths with his brother and singing songs. He loves playing catch and tormenting our cat. He loves bananas, apple sauce, and cookies.  He is more alike than different.







I hope that one day a prenatal diagnosis doesn't practically guarantee termination (stats show that roughly 90% decide to terminate when given a prenatal diagnosis).  I hope that others will see that "one over is beautiful".  Jackson is beautiful and we are blessed to be his parents.