A Different Kind of Intelligence

My son Isaac has Down syndrome.

That can mean a lot of different things.  It means he is more prone to have thyroid issues.  He is more prone to skin problems.  More prone to have eye problems.  More prone to have sensory issues...and the list goes on and on.

Some people think--like myself before I had him--that it means he is perpetually happy all the time.  This isn't really true, but his "happy" often manifests outwardly as sheer joy.  On the flip side, his "sad" manifests as complete and utter devastation.  I try to explain that to people when he is wailing miserably over something small, like the fact that I said we are going to have meatloaf for dinner.  And, by the way, my meatloaf is delicious...really.

On parent-teacher conference week, it means that I get to hear phrases like "scored in the severely low range" on many of the tests that they administer to him.  Because of this, and the fact that he can't communicate as well as most nine year olds, people often act surprised when they see him doing anything that requires the least bit of intelligence, like repeating word for word a favorite Disney movie.  People will, in awed tones, say things like, "Well he must understand something to be able to do that."

Yes, he does understand.  Much more than many people know.

Don't get me wrong.  I'm never mad when people say stuff like that.  I see it as an opportunity to educate them about how much many people with Down syndrome can understand, but what gets lost as I talk with them is that Isaac has an intelligence that's hard to put your finger on.  I can't quite figure out how to explain it.

I suppose an example will have to do.  This morning as I was running around trying to get everyone ready for school, inwardly lamenting the fact that I was slipping on letting Isaac do his morning "get ready" list by himself. I was wondering what my life would be like if Isaac could, like a regular nine year old, get ready on his own.  I was wishing I could handle the fact that he can't just a little bit better and be more organized or something.  I was really feeling bad that we haven't had time lately to let him go at his own pace, but he can be sooo slow.  And when I say slow, I don't think you can imagine the kind of slow I'm talking about.  I mean one morning I was determined not to help him get his breakfast and that kid took one hour and fifteen minutes to make and eat breakfast.  If he puts his mind to it he can be done in 30 minutes with breakfast, no faster.  He really does take forever to eat, but it doesn't help when he is stopping at every turn to imagine that he is Po, the Dragon Warrior, or Puss in Boots.

This morning I was rushing around and told him to go to the bathroom to do his five bathroom things.  When I came back five minutes later, he was still standing in front of the toilet imagining.  I said, "Isaac, I shouldn't have to tell you to pull your pants down and sit.  You've known that for a long time."  At some point during this very normal morning we were at the sink together, and I was helping him wash his face when he leaned in and gave me a hug.  He hasn't been a big hugger lately, and when I do get one it is short and  lackluster.  Well, this morning he stopped and looked in my eyes and just kept on hugging. He snuggled until I bent down so I could enjoy a little head resting on my shoulder and a tighter squeeze than I have gotten in months.  I can't tell you how badly I needed that hug this morning.

I can never explain how he knew that I needed it, but he did.  He knew.  You see, he has his own special kind of intelligence, and I don't want to know what my world would be like without it.

Within Reach

I have always said that I never liked teenagers, even when I was one.  I'm regretting that statement now.  I guess you could say it was a little over dramatic.  Not that I regularly tend towards the over dramatic...OK, maybe a little.

But now my oldest child is a teenager, and I think that statement, among others, is causing problems around here.  So I would like to set the record straight:  I do like teenagers.  I mean, they are people after all, and I like people.

I think I am just having a problem letting go of my little boy.  It sounds weird to say that because my little boy has been a pretty independent kid for quite sometime.  He was riding his bike to school with friends by second grade.  And all through elementary school, he wouldn't even let me see his homework because he was afraid I might try to help him with it, and he "didn't need help!"  (He really didn't.  He's as smart as a whip.)  And he swore he never missed me when he came home from week long camping trips.

Where has the little boy gone that had to be returned to me early when his grandparents took him on a vacation to Colorado?  Where is the boy that insisted he would buy the house right next door to us and take me on his honeymoon because he wanted to be with me always?  He is right here.  At this very moment, he is asleep in our basement.  And, I think that is what makes it all so very hard.  He is still here.  I have approximately 3.7 years until he packs up and leaves.  But it feels like he is not my little boy anymore.  He is becoming his own person.

And yet, he will always be mine.  I read something this morning in some random place that had nothing to do with children or teenagers and I started to cry.  It said:  "Just because something is no longer within your reach doesn't mean it's no longer yours."  The author spoke of keeping pieces of our lives in our hearts.

It is what I need to do.  I need to keep the pieces close.  The pieces that he doesn't remember, or remembers differently.  The pieces that we share.  I need to know that it is OK that things are changing because that is how things are supposed to be.  I need to be here for him like I was when he was first learning to walk.  After letting go of my fingers and taking those first steps, his range widened every day as he toddled away and back again.  I read somewhere that it is what toddlers do.  They check back in with their parents often as they explore the world around them. We are their reassurance, their safety.  I need to remind myself that he is not gone, his range has just widened and will get wider still, but I hope he will always check back.  I hope Kimball knows he will always find love and acceptance here...and laughter and comfort and someone who has loved him since before he can remember.  Someone who hopes that even if we aren't close enough to physically touch, we will always be within reach. 

 

Thank You Wild Kratts!



At any given moment, Isaac is pretending to be something.  This morning it was a leopard.

While I was helping him get ready for school, he was giving me a hard time, so I informed him he must be full of spit and vinegar today.  Whenever I say anything about vinegar, he knows I usually follow it up with lots of tickling.  Don't ask me what it means.  I got it from my Grandma Glissmeyer.  Us kids were always full of vinegar and were in need of a good tickle when she was around.  Anyway...this morning Isaac threw up his hands and said, "No, don't get me.  I'm just an innocent mammal."

Big words for a kid that couldn't even say 'Dad' until he was four.  I decided to find out if he knew what he was talking about.  I quizzed him on animal classification.  Snake?  Penguin?  Frog?  Correct.  Correct.  Correct.

Apparently, even though he can't be bothered to remember what that shape is called that has three sides and three angles, he has his animal classifications down pat.  Thank you Wild Kratts!

A Typical Summer Evening

It was nice to sit on the deck at Poppy's house last night.  The sun had set.  The smoke from the High Park fire was billowing in a different direction and the evening was dimming to night.  An outline of a crane waded in the water at the edge of the lake while we chatted and laughed at Josie spraying our dachshund, Wilma, with a water gun to help her cool off.  Then, a small light was spotted in the distance, traveling across the sky.  Rudolph was mentioned, and Donner, of course.  Isaac declared that we all must sing Rudolph the Red-Nosed Reindeer together and so we did.  We sang of a foggy Christmas Eve as we sat in the fading heat of a lovely June day...you know, like anybody might do on a typical summer evening.

Distance

For some reason I think this may sound horrible.  I hope it doesn't.

Today I sat in the van with the windows open and read a book while Josie and Isaac played at a small neighborhood park nearby.  I did not get out and play with them.  As my little sister used to say when she was three years old, I just "couldn't want to."

The day was bright.  The weather perfect.  I was close enough to hear them laugh, but I couldn't hear if Josie was bossing Isaac around or if Isaac was calling Josie names.  I watched Isaac push Josie on the swing and follow her to the van when she hurt her finger.  Band-Aid in place, I watched them run back to the park and heard them whoop with delight.

My heart felt so full of gratitude for them, for the blessing they are in my life.  I'm sorry to say, it's a gratitude that has been lacking lately.  But watching them from that distance let me appreciate how small and young they are.  Ten minutes in which no demands passed from me to them, or from them to me made a huge difference for me today.

A Smile is Never Far Behind

So, apparently, my last blog was a bit of a tear jerker for some people in my family.  Therefore, I would like to make sure I share a smile with everyone.  Because, although I believe it's OK to cry, I also believe a smile is never far behind.

Isaac has been doing some wonderful things this week.  First, he is talking up a storm.  I mean really talking and being understood by more people.  We saw one great benefit of this on Saturday as I was leaving to drop Kimball off to work at a friends house for the day.  I heard some noises that indicated to me that Isaac was playing under our end table in the living room.  His voice sounded as though he was playing pretend and gabbering away as he does.  When suddenly I heard a faint, "I'm stuck."  Then, I heard it again.  I stopped at the door and turned back.

"Are you really stuck, Isaac?" I asked.

"Yes.  I"m stuck.  I need help."

Whoa!  You cannot imagine how many times I have found Isaac stuck somewhere not knowing how to get help.  I was overjoyed as I went to un-stick my living room adventurer, a smile beaming on my face.

Another happy moment came as I was working with Isaac as he made his breakfast.  We have been working on this for a few months now.  When I began the process, I figured the microwave would be the biggest challenge.  I thought maybe I'd have to put stickers on the appropriate buttons.  It turns out the microwave was a cinch.  It was his favorite part, no stickers needed.  The freezer, however, proved very difficult for him to open.  I have him stand on a step stool in front of the cabinets right next to the fridge, that way he can reach a plate and not get knocked over by the freezer door when it opens.  But, because of the positioning he would pull the handle towards himself instead of out.  I figured it would just take a few days for him to unravel that mystery, but he continued to need my one finger, feather of a touch to get the freezer open.  Well, this week we had a break through.  I suggested he grab the freezer door next to the seal with both hands and open it like you or I might open a heavy wall safe that had it's door just slightly ajar.  It worked!  The freezer door swung open.  The safe was cracked and he reached in for his spoils.  His favorite frozen pancakes.  Yippee!  Smiles all around.

Another thing I have gained this week is tons and tons of unsolicited hugs and kisses.  This is a marvelous and very unexpected surprise.  Isaac has been becoming more of a big boy all year and has been less likely to accept or give out these treasures.  Now, he is suddenly on a I-love-my-mommy kick and I am drinking in all in.  It may take us longer to get ready in the morning and my cheeks may be a bit slobbery, but I'm definitely smiling.

Down Syndrome Awareness

Yesterday was World Down Syndrome Day.  A day to promote awareness.  I don't even remember where I learned that.  Probably on facebook.

I was definitely aware of Down syndrome yesterday as I raced to and fro throughout the day, but not because of the label the day has been given.  I was struggling.  Struggling, again, not to be overwhelmed by the challenges Isaac's Down syndrome bring into his life and mine.  I usually try to stay upbeat.  I usually don't even have to try very hard, because, as you can see from the picture, Isaac is absolutely adorable and brings joy beyond expression into my life.  But yesterday things I had been experiencing lately started adding up to feel like a pretty big weight.

Last week,  I went to Omaha and, for various reasons, it ended up being a trip for just Kimball, Josie, and I.  Kimball spent much of his time at the National VEX Robotics Competition (which is good because that was the reason for the trip).  His team came in 14th out of 40, for those of you who were wondering.  Josie and I watched whenever Conrad Ball's robot was in play, but we were left with a lot of down time, so I took Josie and two other little girls to explore Omaha.  We went to the zoo and the children's museum.  We ate at the Pizza Machine (think Chuck E Cheese, but bigger) and we toured the Mormon Trail Center that is next to the Winter Quarters Temple.  We had tons of fun.  I could never have done all that with Isaac in tow.  Or, I could have, but he would have been miserable much of the time.  Many of those places were loud and new, and therefore overwhelming to him.  The robotics competition's low light and loud buzzers would have been especially hard for him to bear.  Half the time, I missed Evan and Isaac as I thought of what their reactions would have been to different things, and the other half I was so grateful I hadn't brought Isaac along that I felt bad about it.

Fast-forward a few days.  I'm helping Isaac with his homework and talking to him about opposites.  He acts like he has not one clue what the word meant.  All I can thing over and over again is--He used to know this!  I suppose it has been awhile since the word "opposite" has been mentioned to him.  I try to shrug it off as we move onto the fun sticker book he gets to do after homework.  But now I see that most of the names of shapes have slipped his mind as well.  At this point, I can feel despair begin to creep around the edge of my consciousness.  I try to push it away, but panic then seems to want to take its place.  Questions dart through my mind:  How can I possible keep him current on everything?  How on earth can I find the time each day to have him count, read, review shapes, and opposites and the hundred other things that I don't even know that he is forgetting?  And how can I possibly add vision therapy to all of this?

The last question is added by some part of my mind that must not be aware of the current fragile state of my emotional health, but is fully aware of the recent recommendation that we add a new therapy to Isaac's schedule.  My mind does that sometimes.  It tries to cram all things dreaded into my thoughts at once, just to see if it can break me.  But, the jokes on it because I don't break and run crying into my room.  I simply feel like giving up.

The morning after that marvelous evening spent trying to refuse to become overwhelmed, I took Isaac to the eye doctor.  The doctor recommended bifocals to try to aid Isaac in his focusing efforts.  His eyes have had such a hard time lately.  I know I should be grateful that we live in this modern time that can provide so many solutions, but I'm not feeling excited that he can be helped.  All I can think is that I hope Isaac doesn't break something as he tries to get used to his new glasses.  I am very worried that he will fall down.  A lot.

Isaac's eye doctor also shared with me that he didn't feel Isaac was a good candidate for vision therapy.  (He really doesn't think it works at all, although I could tell he was only allowed to say that it was controversial and thus far unproven in the scientific world.)  Isaac's OT is recommending he start vision therapy right away.  Both of these people I highly respect, and I take their opinions very seriously.  I am now left to sort out what to do.

I hate vision therapy.  My experience with it while seeking for ways to help Evan with his reading was not good.  At all.  In fact, it is the worst torture I can think to inflict on someone when considering the wide ranges available in the therapy world.  But, if it could work.  If it could help Isaac focus and see better, I would do it in an instant.  His eye doctor said, "It's up to you.  I just try to keep things simple as I consider quality of life verses expense and trouble.  I'm just trying to be scientific."

I told him I agreed with him and felt that considering the quality of the gains that would be made verses the time, expense, and trouble was a smart way to go.  But, as a mother I have one other overwhelming consideration:  guilt.  I have done many things and will continue to do many things simply to keep from feeling guilty.  If vision therapy might help a little, don't I HAVE to try it?

I really don't even know right now.

Yes, I am feeling very aware of Down syndrome right now, which stinks because usually I just like to push that piece to the back burner, enjoy Isaac, and take life as it comes.