When Special is Typical

Anyone living in the world of disability cannot help but have heard about the "typical" siblings of a disabled child.  They miss out on things because of Mom or Dad hauling the Special Kid off to yet another therapy or appointment.  They are always more compassionate than other kids, because their sibling with special needs taught them to have more patience and understanding.    

Are we supposed to be more grateful for these typical siblings, and wish we had been able to give them more attention?  I think we did a pretty good job of making sure the  "Original Three" still led typical lives, despite being saddled with special needs siblings.  Besides, they even got trips to Hong Kong and Taiwan because of the adoptions.  They're pretty compassionate, but show me any family with nine kids and you'll see a lot of love from the older ones being showered down upon the littles.

Five of our nine children have Down Syndrome.  In the realm of disabilities, I think this is pretty minor.  There has never been a lot of pitying the poor siblings going on here.  Besides, the Original Three are all grown up and moving on...although I do admit the reality that some day they may choose to care for their adult siblings.

Leif is still here though, a 4 year old completely typical boy being raised with his 5 special brothers and sisters.

Leif does not know what Down Syndrome is, or what it means for his siblings.  He does know Dante has Autism, and that it makes him different and sometimes irritating.  That's life, though.

So I guess now it falls to the oldest three-- Amelia, ShanLin, and Micah to help take care of their little brothers and sister.

Leif asked his big sister to pour him some juice.  Dante indicated to Amelia that he wanted to go out into the water, and he trusted her to take him.  Micah knew that Kimberly needed some guidance so he took her by the hand on the sidewalk.

Does this technically make them "typical" siblings?

Even Kimberly wanted to give our special Dante a toy and a pat on the head when he fell asleep on the floor.

My kids look after each other in ways that amaze me every day.

These kids are role models for each other. It made perfect sense for Leif to have Amelia do the driving when he and Dante wanted to hang out in Poppy's truck.  And when Leif asked his big brother and sister to play with him,  Micah and ShanLin were more than willing to put on some costumes and play along.  They think it's pretty cool that he's nicknamed them Iceman and Firestar.  (Amelia is Batman.)

In our house, all the kids are learning compassion, and they each get their own time too.  Amelia, ShanLin, and Micah take part in Special Olympics Gymnastics and an amazing dance class, Leif and Kimberly are each in a gymnastics class, and Dante gets to go to school every day and have boatloads of attention from his wonderful teacher and aides.

In our house everyone is typical and special, even if none of the kids living here know-- or would care-- what those words mean.

Put On a Happy Face

I have been asked many times since Spring Break how our trip was...and almost every time all I can do is smile and say, "The weather was beautiful and the children had lots of fun."  That is the truth, but not in it's entirety.  I cannot keep telling the story of how one stupid event cost us our time with our boy, which was very painful and frustrating for all of us since seeing him was entire reason for making such a long trip.

Our second son (I'll refer to him as 2 of 9 since he doesn't always like to be named) has been in Georgia for a year, and we all miss him.  In February Jamie and I decided that we would take a road trip to visit 2 of 9.  Our first thought was to just take Dante, Leif, and Micah- leaving the girls with family, but that was not a possibility.  We went back and forth for a few weeks trying to decide if the van would make the trip (it has over 200,000 miles!), and if we would survive a 17 hour drive with 6 kids, then doing the drive all over again to get home.  There were also the logistics of finding someone to feed and care for all of our animals while we were gone.

In the end, the desire for all of us to see "2 of 9" won out and we started planning the road trip to Georgia.  We would stay at hotels on the way down, and we rented a cabin at a KOA for our 3 nights that was near our son's base.  We planned to visit a beach, do lots of talking, and visiting with old friends who drove 5 hours down from their Georgia home.




We arranged for a housesitter, packed our clothes and prayed for our van to survive!

The drive was beautiful, and blissfully uneventful.  Kimberly did not always appreciate all the hours strapped into her carseat, but in the end we were all thrilled to arrive at the campground.

We were reminded how much Dante absolutely loves to swim.  He was so mad every time we had to tell him swim time was over.  In one hotel on the way home again he screamed so loud and long about getting out that I was surprised no hotel staff came in to check on us. (Although maybe they had security cameras and saw it all? Or maybe someone had experience with Autism and knew Dante was fine?)

Unfortunately, not everything went according to plan.  Something went very wrong for 2 of 9, and we were given very little time with him.  We were supposed to be together from Monday morning through Wednesday morning, and instead we saw him for a few hours on Monday, a few minutes on Tuesday, and not at all on Wednesday.

I was torn between anger at the military system, grief for not seeing my son, grief for my kids not seeing their brother, and grief for 2 of 9 not getting to see us.  It took a lot of effort for me to put that aside and make sure the children were still having a good time, running around, swimming,  going to the little playground, and roasting marshmallows.

Honestly, I'm still a bit frustrated about the whole thing.  I know I should have just been grateful for the time we did get.  Clearly from these photos it can be seen that the children still had fun.  We did not go to the beach as planned, since we were hoping our Sailor would suddenly arrive, but a day of waiting at the campground resulted in only a 15 minute visit.  I feel cheated, and I feel that my kids got cheated, and the timing of the situation could not have been worse.  And my poor boy is still suffering the consequences of someone else's actions.  That really angers me.

I know that some day we will look back and this will have been a small blip in the big picture, but at the time, and still now, it is hard to rejoice in all circumstances.

Since Leif barely saw his big brother and we never made it to the beach (or anywhere!), I am saving tip money and hoping to fly down with him for a weekend visit in the Fall...too soon to drive again!

Next April we will likely make the trek again, Lord willing and van still working, and next time will be different, or at least the way I handle the any frustrating turns of events will be different.

In the end, it was a good trip if I look at it as a family vacation and not a pointless drive to and from Georgia.  We spent some time with good friends, spent a few hours with a son we had not seen in a year, and we learned that the children-- Dante included --can not only survive a road trip, but enjoyed all the different hotels and eating out.  The weather was beautiful, a nice change from the cold of Massachusetts, and everyone we met in our travels was pleasant and friendly.

God is good...even when I have a tantrum and ask him "WHY?"