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).

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  In a world where there is a lot of outdated information about individuals with DS, I wanted to make sure that they had the most accurate info so that they could make a more informed decision.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.

Sunday, February 22, 2015

Mishmosh post!

How is it that it's 2015, and I have sat down multiple times to post an update and it just never gets done!  The last few months have been a complete blur...and since its been eons since my last post, I figured I would do a summation of the last few months.

Littlest turned 2 this past August! (yes - he's almost 2 1/2 now...)

We had a Thomas themed birthday party for our family and his day care buddies.  It was packed house and we felt so blessed that so many of his buddies (and our family) were able to come over and celebrate with him.

Between my Mom and Aunt Holli, Jackson knows he can always get someone to spoil him with some food.

We've come a long way since the above picture.  When I was looking closely, I noticed Jackson was wearing his orthotics.  He no longer where's these as he was walking better without them.  So one day at therapy, his PT walked out with his shoes and orthotics in one hand and said, "stop wearing these and get some New Balances and we'll see how it goes".  He hasn't worn them since!

Those gifts are great, but this wrapping paper is super fun!

 We attempted Halloween trick-or-treating.  I bought the boys "matching" train costumes.  Thomas for Grayson and Percy for Jackson in hopes that they would be fine wearing them.  Neither boys like wearing things on their heads (although with the cold weather this year - that has gotten much better) so anything with a mask or head gear was out of the question.  Since they both like Thomas and Friends, and these just drape over their clothes (and the hat can totally be optional), this seemed like the way to go.

Grayson wore his for about 5 minutes for taking it off and I couldn't even get it on Jackson.  So we at least have costumes for next Halloween where we can give it another try.

Grayson enjoyed playing in the leaves this fall.  He was a pretty good helper with bagging the leaves, but you just can't resist the temptation of rolling around in a giant pile...I can remember how much fun I had when I was a little kid, so it was worth every re-rake after he was destroy the pile I was making.

We attended the first Buddy Walk hosted by Chesapeake Group.  It was absurdly cold and windy that day, but well attended!

 Neither boys would keep their hats on (or gloves for that matter) and Jackson fell on his face while walking around everywhere and busted his mouth (hence the blood outlined lips).  But all in all, a great inaugural event.

We hosted a post-Thanksgiving gathering for my family and decided it'd be a great activity to have the cousins decorate the tree.

We attended a birthday party for James, a buddy from day care (although Jackson was under the weather so he was unable to join us).  We kept Grayson at this day care even though we had to move Jackson and it has worked out fine.  Not too hectic trying to get both boys and worth it to keep the consistency for Grayson as he establishes bonds with his buddies.

 Mr. Wayne (one of the awesome Fontaine duo that watches this group of kids) helped the kids pin their names on the superhero.

Admiring his handiwork.
James's birthday is right around the same time as Jackson's.  We elected to just do a family gathering, since Adam was going to be away on business that week and we felt it would be crazy, hectic trying to get a party together.  We ended up canceling it (and had to miss his cousin's birthday) because of being sick.

Later that month, we woke up Christmas morning to discover what Santa had brought us...

Jackson wanted to put all of his things in the tree...it was pretty funny.

Grayson was pretty excited for his Curious George stuffed animal and that is one of his go-to book series at bed time.  George has become part of our bedtime routine after story time, with "monkey climb-up" which is basically me pretending that George is climbing his crib and he slams a pillow into George to make him crash.  He also likes when I use George to push him down and say "go to bed".  George got peed on, so we are currently substituting a bear for these activities.  George is clean now, so I guess I should swap him back in.

Later that day we headed over to Grammy and Pop's to visit with family and open more gifts!

Lacey trying to recruit 'em young to join her in game playing.

He looks like he's up to something.
Then we did Round 3 of gifts back at my house with my family!

Uh John...that wasn't your gift to open...but thanks.

But all in all, most days are quite the routine, yet chaotic.

 The movie "Airplanes - Fire and Rescue" pretty much runs on repeat in our house.  It's hard to deny Jackson when it's so darn cute when he asks for us to put it on...plus the fact that he initiates his wants in this case is pretty awesome.  He knows it practically by heart now.  Its really cute to watch him talk along with the movie.
 Both boys love Thomas and Friends, so this tends to be part of the bed routine after bath time. They drink their milk and settle down.  Then we do books and bed.
 Jackson went back to the dentist for his second check-up.  He didn't do as well as he did the first visit, but this is significantly better than when we have to deal with hair cuts.

 One of Jackson's gifts for his birthday were these Preschool Prep Series.  We have watched them here and there focusing mainly on the sight words since he already knows his colors, numbers, shapes, etc.  Both boys like them and I do think they are helpful.  Its been a while since we watched them, so we probably should get back on it!
 Grayson is potty-training and for the most part, he's good to go.  He is still in a pull-up for nap and bedtime, but many times is dry from his nap.  He's had a few dry overnights, but for the most part tends to have  a wet pullup first thing in the morning.   Pooping is another story, but I can at least say that it's getting better.

Who knows how long it'll be till my next post as I anticipate a very hectic couple months ahead, so I'll leave you with this gem of a photo of my beautiful boys.  Till next time...