What the future may hold...

I suppose it is natural to speculate on who and what your children will grow to be.  As far as I am concerned, Charlie can be whatever he wants to be.

His father has plans though.  Plans that take Charlie along a path that would be his path if he had things to do over.  Military.  College.  Homeland Security.  Secret Service.

I don't see it.  I don't think that Charlie will be able to divorce himself from his responsibility to his brother.  At three he is already Jimmie's caretaker.  He helps me get diapers, and he picks up after Jimmie.  And he explains Jimmie to strangers.  I've heard him say many times when people speak to Jimmie, "He doesn't talk."  To my sister, when she opened the car door and greeted Jimmie, he said, "That's my brother.  He's a happy boy."   I can't see him protecting the president at the expense of  his own life, knowing his brother needs him. 

I also watch this very sensitive, loving young boy every day.  I see him tuck in his teddy bear and read it a story.  I see him pick up a notebook and pretend to be a doctor and clean his brother's feet.  I see him dress and undress the stuffed animals.  And yes I see him play with baseballs and hit them off the tee like a big league player, and throw footballs, and play with trucks in the dirt, and even play with toy guns.  But he's a boy.  That's how boys play.  And while that boy part is so very like his father, he is growing up knowing that his brother is not like other kids, and that he is somehow the "big" brother even though he is younger.  He gets it.

I don't think he will ever be in the secret service.

But if he should choose that path, then I will support it.

How To Build a Coke Box Train:

How To Build a Coke Box Train:

Last night Charlie asked me to build him a train from all the coke boxes we had waiting to go out to recycling.  I looked at it and said, "Ok, buddy.  I can build a train."

 The cars were easy, I just glued two coke cans to the "bottom" of the 12 can boxes.  The engine was a little more challenging.  I used a 24 can box for the main body.  I then cut another 12 can box in half at the middle.  I taped the half box to the narrow side of the 24 can box.  I glued a coke can to the top of the half box as a smoke stack, slightly off center.  I then cut a semi-circle from the top of the remaining unused half box, and glued it to the front of my train as a cow catcher.  Two more cans at the bottom of the engine completes the basics.  Then a string at the front to pull it by, and strings to couple the cars to the engine and the coke box train is complete!

Well that hit me up side the head like a ton of bricks!

Today is one of those days.  I have mixed feelings.  On one hand, I am happy that my son is getting to go to pre-school and that we are giving him every opportunity to excel.  On the other hand, I feel like someone just punched me in the gut.  Cognitive delays?  Really?  I was only concerned about his speech being a little hard to understand.  But I never imagined that his social skills were delayed.  I never imagined that his cognitive skills were delayed, that he was too easily distracted.  And that his speech was in fact fine.  I'm at a loss.  Charlie's so smart.  He grasps what I think to be complex concepts.  He has a very active imagination.  He loves his books.  He is compassionate.  He is loving.  And potty training him was a breeze!  He caught on immediately.  It took a bribe to get him to use the potty for bm's, but once he got that, he has been perfect.  He never has an accident.  Never.  His gross motor skills are advanced.  Where did this come from?  How did I miss it?  Granted, I don't have a normally developing child to compare him to.  Compared to his brother, Charlie is miles ahead.  But still.  I just didn't see it coming. 

I really thought that we would walk into the Parent/teacher meeting and be told that Charlie did not need pre-school. 

He is excited about it.  He is ready to learn.

And he does need the social interaction.

But still... I just don't know how to feel.  I almost feel like I am failing him somehow.

Silly, I know.  I mean, I am the one who asked for the evaluation, so I must have had some inkling, some tickle, other than knowing that his brother is so far behind and being overly cautious.  And I am the one who followed through and took him for evaluation, even though I was telling myself it was a waste of time.  I am the one sending him to pre-school as a result.  I am the one giving him everything I can to help him.  But I still feel like I have failed him.

I'll get over it.  It's a selfish feeling.  Time to be selfless for my youngest boy too.

Princess Samantha's wedding and all I have missed...

Suddenly Samantha is 21 years old, and, even more suddenly, she is married.  Gone.  Half her life.  I moved away to find my own life in 2001.  In 2012, the little girl I loved as my own, whose sweet kindergarten gift of a key chain that reads #1 Aunt still holds my keys, who I took to ice skating shows and baseball games, who I had to seek out in the dressing room when her Grannie made her try on a dress she thought was way too girly because she discovered the twirl of that baby doll skirt in the 3 way mirror, who I had stay nights and weekends with me, who I took to mass, who I loved so very much, but who I left behind for the man I was meant to be with, became an adult in the eyes of the law and a wife in the eyes of the world, and I have missed it.

I admit with a grateful heart to feeling jealous that her other aunts prepared her reception meal so beautifully and lovingly.  Oh yes, it's nice.  Wow!  What an amazing gift ladies!  You deserve a ton of praise.  Ah, but I was that aunt, not you.  I was.  And then I was gone.  I am so glad that you are there, and that you are there for our beautiful princess, for truly she is our niece, not mine alone, but I am sure you know exactly how I feel.  I am sure at some point, Samantha was gone with me, when you had wished her with you.  I am so happy that you were there.  So happy you enjoyed her day and blessed her day with your loving care.  And I am so sad I missed it all.

I celebrated Samantha's wedding by watching "Say Yes to the Dress" and "Four Weddings".  And watching my 5 year old destroy the house again.  Paper everywhere.  Laundry everywhere.  Things thrown just to be thrown.  Anger just because.  I love this child with all my heart.  And I make sure he does not hurt himself in his tirades, or his brother.  But I feel helpless to stop them.  And I know had we had the funds and the time to attend Samantha's wedding, I would have spent the entire time chasing Jimmie...or David would and then he would be mad that I didn't chase Jimmie enough.  Life is very isolating when your child is in destructive mode and you don't know how to fix it.

Tomorrow he has an appointment for a neuropsych evaluation.  God I hope we get some answers.  I really want to enjoy my sister's wedding in April.

The Magic of Christmas

I am loving this Christmas.

My love, Jimmie, simply doesn't register Christmas, except to kick the tree.  Presents mean nothing.  Santa is nice, and he likes him.  Probably for the red suit and the big smile.  Who doesn't like Santa?  But there is no excitement in his eyes about Christmas.  It's just Christmas.  It's fun.  There's family.  Scott's house or Aunt Beth's house are nice places to run around in.  They're bigger than our house.  But that excitement only comes in the being there.  There is no anticipation.  And anticipation, after all, is the magic of Christmas.

Last year Charlie was almost 2.  I had hoped he would kind of get it, but not really.  Not yet.

This year, he is almost three.  He has learned to talk.  And he gets Santa....big time.  He watches all the Christmas Specials.  He went to the Christmas Parade with Mommy (Jimmie stayed home sick).  He watched the parade as he shivered with a huge smile on his face.

He waited in line at the bank after to see Santa Claus.  He was patient.  He did not butt in line.  He stood by my side the whole time.  The little boy in front of us was about Charlie's age.  He would have none of Santa.  Nope.  Not sitting in his lap.  Nope.  Not smiling for a picture.  Nope.  I have no idea who this person is, and he scares me.  Nope.  But Charlie stood there perfectly calm, holding my hand.  Then the family moved on, giving up this year.  I said, "Charlie, it's your turn."  He dropped my hand like a hot rock and took a running leap into Santa's lap.  Big grin.  Big hug.  Tongue stuck out.  For some reason he sticks his tongue out when he smiles.  Santa asked, "What do you want for Christmas?"  He gave a one word answer, loud, and clear, at least to Mommy, who actually did have to interpret it to Santa, "TOYS!"  Santa laughed, "Ho Ho Ho!  I think the elves can manage that!"  And for a week or so, that was the best answer we could get out of him.

But I knew his secret desire.  And he revealed it to both Mommy and Daddy in a simple trip to the grocery store.  He walked by the cart.  And then he saw it!  And he made a run at it!  And he squealed with delight!  "FLASHLIGHT!"  His father pried it out of his hands.  I laughed and said that he should ask Santa for it.  He put it back with joy knowing that Santa might bring him that flashlight.  We walked away.  As we rounded the corner, and he bounced ahead, I gave his father the high sign.

Ever since, whenever you ask what Santa is going to bring he says, "Toys!  and a flashlight."

Tonight we called the North Pole.  Charlie spoke to Santa on the phone.  Santa asked again what he wanted (and again Mommy actually had to interpret), and Charlie once again responded, "Santa Claus bring toys and fwashwight!"  He really wants that flashlight.  And it is so awesome!

He sat in the recliner covered with the Disney blanket, drinking a glass of milk, watching House of Mouse Christmas, falling asleep.  I got him into bed, tucked in, teeth brushed, books read, prayers said.  No sleeping.  An hour later, he calls, "Mommy!  Mommy!"  I go in.  His eyes are wide.  "I hear sleigh bells."  I laugh.  "No baby.  Not yet.  You have to wait a few more days."  He says, "Oh.  Santa Claus bring fwashwight?"  I assure him that I am sure Santa will bring his flashlight.

Yes.  The magic of Christmas is the anticipation.

Triumph!

Ah, today was awesome!  Today my son was running around in the back yard.  Running for Jimmie is a stimming activity.  He is in his own world.  He loves it!  It's a happy stim, but it is a stim none-the-less.  I have seen him grabbed up by his father and whirled around while running and seen a response, laughter, giggles, but as soon as he is put down, he runs again.  I don't mind it.  It just is what it is.  But today, well, today, he was running, and he looked at me from across the yard.  He made firm eye contact.  He smiled.  He ran at me.  He ran to me.  He flung open his arms and threw himself into my waiting arms.  And I saw it coming.  I saw it from the moment his eyes locked mine and that smile spread across his face.  It was brief.  A short hug and back to running.  But my God, it was an awesome moment.

What do we live for but moments like these?  And I appreciate them so much more than the Mom next door.  She gets them all the time.  She cherishes them to be sure.  I don't doubt her motherly love.  But I don't get them all the time.  Well, not from Jimmie.  Charlie makes a game of it.  But Jimmie has never done that.  Ever.

I have never before seen such clarity in his eyes, certainly not combined with purpose and love and joy.  These are things that rarely register on his beautiful face.  I see purpose when he goes after a straw, but I also see that he sees absolutely nothing but that straw.  I am invisible.  Even the drink the straw is in is invisible.  He sees only the straw.  I have seen joy.  He is often happy.  I have seen love, when he happens to find himself looking into my eyes.  But today, all these things combined.

And I swear for that brief moment it took him to cross the yard and hug me, he was a normal 5 year old boy.  No sleepiness in his eyes.  No overly medicated droopiness.  No cognitive disconnect with the world.  He saw me.  He had a purpose to hug me, but he was not blind to the rest of the yard or to his running or to the wind blowing in his face.  He was happy.     He was present.  He was 5.  It was amazing and wonderful.

It makes me want to get him weaned off some of these medications.  I want to see more of that little boy.  I want the seizures to stay at bay.  I want so much...  But I'll take the moments as I get them.  And I will rejoice in them.  And I will cherish them.  And I pray I always remember that moment.

Special Needs Hierarchy?

I just watched a wonderful news story.  It was full of heart and generosity and love and it slightly pissed me off. See it was about a playhouse for children with Down Syndrome, a fun place that advocates for Down kids and provides vestibular stimulation, developmental therapy, and social interaction.  Down kids.  My LGS son doesn't have Down Syndrome.  So he can't come and play in that neat place and meet those neat people and benefit from all they have to offer.  Somehow that just doesn't really seem fair.

Don't get me wrong.  I'm all for advocating for children with Down Syndrome and for helping them to reach their full potential.  I believe with all my heart they are wonderful children who deserve the very best we all have to offer them.  My cousin Joe Joe had Down Syndrome.  He was a loving man child, who remained mostly non-verbal his entire life.  He could say a few words.  His name.  My name, which came out Gunna.  Hot Dog.  Ice Tea.  Mom.  Dad.  Bubba for brother.  He had a great sense of humor.  Once when my father was chasing my mother with the running hose, she screamed for help from Joe Joe.  He was her cousin as well.  Her uncle was married to my father's sister... but let us save our convoluted family tree or ring or whatever it really turns out to be for another time.  Joe Joe stood and stared at her wordlessly for a second.  Then he did his best body builder pose and growled like the Incredible Hulk.  My father had caught my mother and was dragging her back to the hose, but as Joe transformed into the Hulk, my father dropped my mother in a fit of laughter, and Mama escaped into the house laughing and singing her thanks for Joe's brave rescue of her.  Joe Joe played with my sister and I daily as children.  He is ever-present in my early memories.  I spent my life defending him from bullies on the bus, and I openly hugged and kissed him in view of my friends and told them all to leave my boy alone.  I loved him as if he were a brother, a friend.  I only ever wanted the best for him.  And he deserved so much more than he ever received.

But Down Syndrome is not exactly rare. The prevalence is 1 in 800 live births or 1 in 971 children aged 0 to 19 (http://www.medicalnewstoday.com/releases/172493.php).  Infantile Spasms, of which 49% of LGS cases began as and which is how Jimmie's epilepsy began, has a prevalence of 1 in 2,000 to 4,000 of live births (http://pediatricneurology.com/infantil.htm).  That is a staggering difference.  Anywhere to half or a quarter the total number of cases.  I daresay almost everyone recognizes a child with Down Syndrome as a child with Down Syndrome.  They would never say that Down Syndrome was a case of colic.  Certainly no medical professional would dismiss Down Syndrome as Colic.  Ask an IS parent how many times that has happened to their child.  Sad.

My point is I don't think that special needs groups should splinter like this.  You shouldn't have to have Down Syndrome to be allowed into Gigi's Playhouse.  You should just have a need for a place like Gigi's playhouse.  There should be no hierarchy.