Eight

Oh how things have begun to change for you, my now 8 year old boy.  This past year has been a journey of separation.  Scary at times, I’m certain.  You have become your own person.  No longer choosing to follow in the footsteps of your big brother.  Beginning to expand the friendships you make.  Finding your voice in the crowd.  Following your own dreams.

Today I look at you and realize that you are no longer the sweet baby that I once held in my arms and rocked to sleep.  You are growing into an amazing young man.  You are kind and compassionate.  You still want to snuggle sometimes, but only on your terms.  You still want to be tucked in every night and get that last hug and kiss.  Now, though, you’d rather run off with friends or head outside to play than spend extra time with me.  And, that’s ok.  You are your own person now.

You have found a love for all things sports.  You talk Lions with papa.  You were excited to hang Tiger’s logos all around your room.  You love watching the Walleye play.  What a thrill it was for you to skate on the very ice you watch them play on – and then get to skate on that ice again with those very players.  You want to try everything if it’s related to sports or outside.  You skate and rollerblade and bike and fish and play catch and basketball and, and, and…  I’m certain I’ll see very little of you indoors this summer, and I love that.

Words cannot begin to express the pride I feel at being your mom.  That is what you call me now.  Just mom.  Gone are the days of mommy.  Yet you say mom differently than you say most other words.  I know that it still means something very special to you, even though you shortened the name to suit your independence.  You still come running to me to tell me something great and look to me for that extra hug when something hurts or disappoints you.

How I have loved watching you grow over the past eight years.  They have gone by far too quickly.  I can’t begin to imagine what the next 8 years will look like.  Happiest of birthdays my sweet baby.  Thank you for the joys you bring to my life.

 

Smiles

Sun shining so warm and bright that I can finally turn down the heat in my house and car.

Green grass and baby trees revealed in the wake of the melted snow.

Hugs and snuggles from my boys.

A phone call from my mom saying she spoke with a spiritualist who spoke to my sister.

Photos of the house my nephew and brother-in-law are buying.

A surprise, upcoming visit with an amazing blogging friend and a long-lost friend.

Dinner tomorrow with friends who have been there through thick and thin.

A social calendar filled with dinner dates with friends.

Being here, in this space, once again – for however long.

 

1 in 88

Statistics.  Numbers.  Nicely, neatly fit in a box.  1 in 88.  The number of children who are diagnosed with an Autism Spectrum Disorder.  I see this number plastered on billboards and posted on my Facebook news feed.  It screams at me from the TV, radio and even the intermittent commercial on Pandora.

1 in 88.

My son has dark brown hair that is thick and soft to the touch.  His eyes are the same shade of hazel as his aunt’s, though they are not related by blood.  He has long, skinny legs and long, skinny arms.  At 9 years old, he still has to wear pants that cinch in the waist because he is skinny from head to toe.  He carries the flat backside that is a genetically sound component of his grandpa’s side of the family.  He looks like his uncle Joe, identical to him really.  He has mannerisms that match his favorite cousin, though they see each other only once a year.  He wears glasses that have shaped his face since he was 6 months old.  He wants contacts but I can’t seem to imagine him without those adorable glasses.  He makes this face when he’s being sarcastic or trying to prove a point.  It’s so distinct and so him.  I have to look away now whenever he makes “the face” or I will laugh.

My son loves Minecraft.  He loves Pokemon.  He loves, Loves, LOVES Legos.  Strike up a conversation with him about any of these topics and he’ll talk your ear off for hours.  He builds the most amazing creations out of Legos but gets upset because they are never quite right.  His Minecraft world would blow your mind.  His libraries have books, hundreds of them, with quiet spaces built in for reading.  He is always adding to his world and changing what he’s already done.  Again, the world is never quite right.  There is always room for improvement.  He bonds with his brother over Pokemon.  I get lost in the discussions they have about the powers of each character and who is the best and why.  It’s an amazing force that brings them together in a way I never thought possible.

My son gets lost in books.  He spent many years of his early schooling where his eyes did not work together.  Reading was incredibly difficult for him.  We sought out the proper help and implemented some strategies at home and at school.  Now he reads at a 5th or 6th grade level in only the 3rd grade.  He loves comic books of any variety.  He as read the Diary of a Wimpy Kid series completely through more times than I can count.  He has a photographic memory and can quote from any book that he has ever read.  I know I can quiz him on any book that he has read and if he doesn’t know the answers then I know he didn’t actually read the book.  He is the only kid I know who gets in trouble at school for sneaking off to read his book.

My son is a friend.  He has a couple of friends that he has held onto tightly since kindergarten.  They play together daily and talk about the things that 3rd grade boys talk about.  He has birthday parties that other children attend and he attends birthday parties with other children.  He loves to have his friends over to play whenever possible.

My son gives the most amazing hugs.  Ocean wave hugs he calls them.  He wraps his arms around you tight and squeezes while snuggling his head into the curve of your neck.  They last for mere moments but their effects are with you for hours.  He still likes to snuggle on the couch during popcorn and movie night.  He likes to be tucked in and can’t fall asleep until he has a goodnight kiss.

According to the professionals and the insurance company, my son is 1 in 88.

To me, my son is Eli.  He happens to have Asperger’s.  Sometimes that diagnosis brings him anxiety and some social awkwardness.  Always my son is the amazing child I have already described and so much more.  He makes my eyes smile and my heart glow.  He is not a number.  He is not a list of criteria.  He is a child.  He is Eli.  He is my son.

I promise you, he will never fit in your box.   

The Summer of Constant

Notice this is titled constant, NOT consistency! This summer has been anything but consistent to date and that looks to remain the same until school starts.
We began our summer with our annual week at the cabin with my brother-in-law and nephew. It was amazing, as always. My nephew is getting so very big. It was fun to watch the boys play on an entirely new level this year. We did more hiking and more swimming and more geocaching and more just being together. It was hard to leave each other at the end of the week. But we all left with the promise to meet up again next year, same bat time, same bat channel.
We returned home to prepare for the boys’ first diving meet of the summer. We traveled once a month throughout the school year to various locations around the state of Ohio. Summer promised to be much closer to home. The first meet was only about 45 minutes away. Thankfully the summer meets are smaller in size which makes for much shorter meets. Meet #1 Keegan took first place out of 8 children diving and Eli took 2nd. They were only separated by three tenths of a point! It was amazing to see their confidence boost! This meet meant that they were only at their summer camp for 3 days the very first week that they started.
The next week my other nephew came for a visit and stayed the entire week. The boys got to go to camp together at the local children’s science museum. They had a blast. It was Super Splatter Science camp with a disclaimer that the children attending had better be prepared to get messy. Perfect for 3 boys! They tye-dyed t-shirts and made volcanoes and elephant toothpaste along with a plethora of other things. They were exhausted every day when I picked them up. A sign of a good camp, I’d say!
July began with more inconsistency. Only 2 days of camp, another diving meet and then the 4th of July holiday break. Again my boys took 1st and 2nd place. They were the only two divers in their division but Eli got to be 1st this time and it was yet another great opportunity for a confidence booster. We celebrated the 4th by watching fireworks from our front yard with friends. Then we packed up and headed north for the weekend. We played at the lake and the boys went boogie boarding. Lots of laughs and fun until Keegan caught a virus and was in bed with a high fever for 2 days.
We returned home to prepare for yet another diving meet. Again it was 1st and 2nd place – Keegan in first this time. Again they were the only two diving in their division. I love that they didn’t care about that part! They just took pride in the dives they did and the ribbons they received!
This week we find a little of whatever normal seems to be. They boys get to go to camp for 4 days – I don’t think they’ve been to their regular camp for an entire week yet. We will finish off this week with a diving meet championship for the boys on Friday. Then on Saturday I am rowing in a dragon boat race. The boys are so excited to come down and cheer me on. I’m excited to be a part of something so amazing! Sunday we get to go to a birthday party. Then the week starts over with normal, I think…
As crazy as our summer has been and as quickly as it’s flown by, it has truly been a summer of fun. We have laughed and played and watched movies and just enjoyed being a family. There has been a minimal amount of anxiety over the diving meets. There have been a fair share of brotherly fights but there’s not much to be done about that.
We are looking forward to another month of fun before the calendar screams that it’s time for school to begin. Then my 2nd and 3rd graders with walk through the doors of their elementary school, new backpacks, lunch boxes and school supplies in tow. Who knows what kind of crazy that will bring!

Hiding…

I’ve been away for far too long.  I’d be lying if I said I wasn’t sure why.

Life fell apart.  It does that sometimes.

Instead of venturing out for help, I closed the door.  All doors.

I forgot that I have friends for a reason.  I forgot that this is my space for venting and laughing and crying and being me.

Perhaps it was the voice in my head saying people will judge like they did when we asked for help once before.  You didn’t judge – you were there for my family.  Others?  Others judged.

So this time?  This time I closed the door.

I am the mother to a child with Asperger’s.  A child with anxiety.  A child who had a very rough end to the school year.  He lost it and so did I.

I’m thankful for his amazing counselor who got us through so much.  

I’m sad that I lost touch of this space for so long.

So I’m peeking out of my corner and running to home singing “Oly Oly Ox on Free!!!”

I’m back with fun, frivolity, laughter and tears. 

I hope you’ll still have me!  I’ve missed you all 🙂

Seven

My dearest Keegan,

Today you turned 7.  It seems like only yesterday that you were being placed on my belly and I was straining to see if you were the little girl everyone thought were going to be.  You had your own April Fools joke to tell when you showed yourself to be the sweetest of little boys.  

You are the most sensitive of angels.  You refuse to watch a sad movie more than once.  Your feelings are hurt so easily.  You love all creatures.  Wicket is truly your best friend. You two rarely go anywhere without each other.  You hurt when others are sad or sick.  You try to make everyone feel happy.

Even at seven you are my snuggler.  You love to curl up with me on the couch under a blanket.  You prefer to sleep with a mommy whenever we go to the cabin.  You get upset if you miss a hug or kiss goodnight.  You still like to be sung to and have your hand rubbed to get you to fall asleep.  I think if the two of us could still fit in a rocking chair together you would still let me rock you to sleep.

Still, you haven’t quite found yourself.  You strive to be like your big brother.  You try to like the things he does, even the things we do.  But you haven’t quite found your happy place.  I long to see that happen for you.  You have an amazing smile and I love seeing it.  I just know when you find who you are I will see that smile so much more often.  

I have had the last seven plus years to get to know you and I have only barely scratched the surface.  I can’t wait to see what else lies beneath.  

I love you Keegan.  I hope today was the happiest birthday yet.

Love,

mommy ❤

Project 365

I had lots of fun with photos this week.  The world gave me so much to work with!

The tree outside of Eli’s worry doctor’s building.  We noticed last Tuesday that it had buds on it.  It was such a lovely smile to think that spring could be around the corner, finally!

Nana and Papa joined us at diving for the first time last Wednesday.  There was so much pride in their faces.  Nana kept shushing us if we even considered talking while the boys were on the board or jumping off the side of the pool.  It was fun to watch them watching their grandsons.

The cake, before.  There were also Rice Krispie treats and finger jello that were made up in anticipation of putting it all together.  It took everything that we had to keep Keegan from eating the cake alone!

I can’t believe how fun this cake ended up being to make!  My honey made the finger jello and worked very hard to get swirls to stay in the blue jello.  It actually looked like water.  I loved placing it by the Rice Krispie treats and having it resemble wave coming up on shore.  The pig was a major pain in the ass to make but I smiled every minute of making it knowing that Keegan would simply LOVE the fact that I took the time to put an animal on the cake.  There is not a day that I regret taking that cake class and taking my boys up on the challenge to make all of their cakes.

I share this one from the day of the party again.  It’s my most favorite picture.  This is the Keegan I know and love.  This is the smile and the laugh that makes me fall in love with him every moment of every day.  I love how beautifully this picture captures all that he is.

Eli has been really into crystals lately.  Not sure how it started but now he is reading all of the books we have in the house about crystals and looking things up on the internet.  My honey and I bought this geode ages ago, in another lifetime and it’s just been sitting on our shelf waiting for the right person to set it free.  Eli and Keegan took turns hitting it with a hammer.  The smiles when they finally broke it open were priceless.  We spent hours afterward trying to figure out the prize inside.  They both have it in their backpack to take to show it to their friends.  I love how proud they are.

Tuesday showed buds on a tree and today brought snow.  Not a lot but enough to cancel school for the day.  The boys came together to roll this giant snowball.  They attempted to roll more to make a snowman but there just wasn’t enough snow.  Sadly the weather warmed up and all we have to show for it is this large ball of snow in the backyard.

What inspired you this week?

Par-tay

I’m crazy.  I know it.  It’s never been a secret.

Saturday I welcomed 8 boys into my home to party with my 2 boys to celebrate Keegan’s almost 7-year-old birthday.  And party we did!!!

It started with the cake.  Keegan requested a Minecraft cake.  I know NOTHING about Minecraft.  The boys made me play it a couple of times and I was confused as hell.  I just don’t get it!  So thank goodness for Pinterest.  Without it this birthday party would have been a wash!

A little something for everyone.  Chocolate cake with frosting, Rice Krispie treats (regular, red and green colored), red and blue finger jello.  The cake went over HUGE with the 10 boys in my house.  The birthday boy got the pig of course 😉

I hit the Minute to Win it website for some party games.  The boys must be entertained.  10 boys in one house can be crazy destructive otherwise!  I came up with some great ideas that seemed to keep the boys truly happy.

The boys played a foam noodle battle while standing on 2×4’s.  The goal was to push your opponent off the board.  The boys were all laughing so hard they ended up falling off the boards!  It was a blast.

Then we worked to keep balloons in the air for 2 minutes.  It seemed easy enough until I started through the crowd hitting balloons away from their owner!  Afterward we though that using a fan would have been a great idea too.  Hind sight 20/20.

When that game was through we used our balloons in another really fun way.  We popped our balloons!!!  When needed we used friends to help us.  If there weren’t already giggles galore there were a thousand times more now.

Finally we played the boys most favorite game.  They love pin the _______ on anything themed to meet their party needs.  Keegan asked for a creeper and a creeper I delivered.  We pinned the eyes on the creeper and it too was a blast.  The boys couldn’t wait to get in line.  Some cheated – as boys are want to do.  Keegan lost track of where he was (only a little I think) and pinned the eyes on me instead.  His reaction was totally worth it!

It was time to feed the boys a little and calm their little heart rates.  They came upstairs to this decor.

Then it was presents and cake.

The boys played a little while longer and we sent them home with these:

This was the gang that hung out together at my house on Saturday and had a blast.  Awesome little boys that whooped my butt!They made the day special for my sweet birthday boy!

A Heartfelt Story

I had a completely different post all set for today but this story needed to be told instead.

A little over 3 years ago I met an amazing mom and her remarkable daughter.  My very first meeting with them was in the Pediatric ICU at a local hospital.  Her daughter was almost 3 months old and had never been home from the hospital.  During my visit a resident came in to talk to mom about signing a DNR for her daughter.  Mom was devastated.  We had just been talking about her dreams for her daughter.  Dreams that included getting cochlear implants and making sure she can see and getting her to walk and watching her grow up.  This resident attempted to pull the rug out from under those dreams.  After he left the room mom shook her head and told me she didn’t care what the doctors said.  She wanted more for her daughter.  She wanted to dream for her and just let whatever happened happen.  In that moment I knew I was sitting next to a young woman so much braver than I could ever be.

Time went on and I continued to meet with this family at the hospital.  I became as much a staple there as many of the doctors and nurses.  The staff questioned why I would provide services to a child who was just going to die.  I could have asked them the same thing.  Should have asked them the same thing.  I am an equal opportunity developmental specialist.  All children deserve everything that I have to give them and then just a little more.  All children deserve my absolute best.  And this sweet angel certainly got it.

Certainly for a long time much of my job was to support mom.  She had doctors constantly telling her to send her daughter home and let her die.  A doctor told her to stop playing house with this innocent child and just let her die.  Just let her die.  A common phrase heard over and over again by this mother.  A phrase that the physicians made sound so very simple.  This life is not important.  Just let her die.

Thankfully her mother loved her with all of her heart.  She ignored the doctors.  She found new doctors who gave her hope.  Doctors who saw the child behind all of the diagnoses and disorders.  Doctors who felt the love this mother had for her daughter and fought with her to make her baby healthy again.

Eventually, that sweet little girl did come home.  In her first year of life she was home for about 6 weeks total.  Mom’s goal for the 2nd year was to increase that exponentially.  And, increase it she did.  Her sweet daughter was home for almost 8 months during her 2nd year of life.  She was starting to make developmental gains.  She laughed when you tickled her.  She smiled every time mom talked.  She began to respond visually.  She was showing all of the doctors just what she was made of.  Deep down her mom already knew.  Her mom did a scrapbook for her.  Pictures of her first couple of years of life.  She was certain to mark the days that the doctors told her to say her goodbyes, that the end was near.  So many of those days were marked in this beautiful scrapbook.  Each of those days her little princess laughed at and moved on to live another and another and another.

Mom got involved with Make A Wish about a year ago.  She didn’t want to take her daughter to Disney or do any of the “typical” things that families tend to do.  The Make A Wish staff suggested a party.  A party to celebrate her daughter’s life.  A party for everyone who has known her and met her and fallen in love with her to come and see her and play with her.  The day of the party was beautiful.  The park was packed with people who knew this little girl.  People who loved her and her mother.  It was truly a day of celebration, a day to honor this amazing little life.

I said goodbye to this family about 9 months ago.  Mom had an amazing opportunity in another city in another county.  She was going to be able to finish school and have some family in the area to help support her.  We cried a little together because of all that I had helped support her through.  She promised to keep me updated on her daughter’s progress.  I was excited for all that was to come for them.

Today I got an email from mom.  She started by saying how much she missed me.  She wanted to write me sooner but just couldn’t bring herself to do it.  Her daughter passed away in January.  Mom was rocking her in their rocking chair, holding her and cuddling her and getting her ready for bed.  In that beautiful mother/daughter moment her daughter decided she was done fighting, done having a body that didn’t allow her to be the fighter that she was.  She was in her mother’s arms, the happiest place she’d ever known.  She was feeling the love that surrounded her.  She died suddenly, quickly and without pain.  She simply closed her eyes and was gone.

As I read the email I cried.  I cried sad tears for the loss of such a very young life.  I cried happy tears for the beautiful way this little girl chose to go.  What a lovely memory this mother has of her last moments with her daughter.  No hospital room, no machines, no doctors.  Just a mother and her daughter in love.  For a mother who knew that she would have to say goodbye to her someday I could think of no better way for it to happen.

Tonight my heart aches for this mother.  It aches for all of the little souls who have had to move on too quickly because their time here was through.  I am blessed to have known this mother and her daughter.  I am a better person for all that this little angel taught me.  She touched so many lives in such a short time.  And now she is a smiling angel in Heaven.

TV Time

A little over a week ago I got our Direct TV bill in my email inbox.  I negotiated with them about 6 months ago for about the fourth time to get our bill lowered.  Last week it went back up to regular cost.  I about had a heart attack.  The mere thought of negotiating with them yet again made my brain ache…  I was done.  I couldn’t do it again.

I sent out the all call on Facebook.  It was time to rid our home of the satellite dish once and for all.  But could we do it?  I’m not a major TV junkie but I do like my shows.  2 Broke Girls, Mike and Molly and Castle on Monday nights.  The occasional Criminal Minds on Wednesday nights.  Parenthood whenever I remembered it was on.  Big Bang Theory, Grey’s Anatomy and Scandal on Thursday nights.  I couldn’t live without the shows I really, really love to watch.  But, I was willing to wait an extra day to watch them if it meant saving us some $$.

My Facebook pals did not let me down.  Within a matter of an hour or two I had tons of responses from people just like me.  People looking to save some money but still have worthy TV to watch.  People with kids who know how to get them through this transition.  I did my research on Hulu Plus and Amazon.  We had Netflix before and were more than happy to get that back up and running.  A friend suggested a streaming device like Roku.  So I did some research on streaming devices.  I took inventory of what we already had available to us.  The Blu-Ray in our bedroom streams Netflix and Hulu.  The other Blu-Rays in the house only stream Netflix.  The one in our bedroom is there because it doesn’t play discs well anymore so moving it to the big TV downstairs was simply not an option.

Saturday morning I woke up with my mind made up.  Today was the day that Direct TV would lose control over my TV watching life.  I talked with the boys about the change.  They were really bummed until I mentioned Netflix.  They LOVED when we had Netflix.  I also talked to them about the money.  They are old enough to understand that concept.  When I explained that we would be saving about $1000 a year by dropping Direct TV they offered to take the dish off the side of the house for me!

I made the call to Direct TV.  The representative on the phone tried to lure me in with $10 off each month and free pay channels.  I asked him if he could get me down to the $16 a month Netflix and Hulu were going to cost me.  He started my disconnect immediately.  After hanging up the phone with him I moved from room to room and disconnected the receivers from each of the TV’s to go back to the company.

We headed to Best Buy next to get a Roku streamer for the living room.  The boys don’t need more than Netflix in the basement and we were set for our bedroom.  I took it home and hooked it up and the rest is history.

We streamed a movie on Netflix for popcorn and movie night on Saturday.  The boys have been loving watching “old” episodes of some of their favorite cartoons.  They also like that they can watch a show when they want, not when it happens to be on TV.  Even I haven’t had the withdrawals I anticipated.  I am alone in my living from around 8pm each evening until I go to bed – usually midnightish…  I often have the TV on.  What I realized is that often it’s on for background noise and nothing else.  Tonight I watched last nights episode of Castle.  It was a great episode and I was fine with seeing it tonight and not last night.  Really everything but Big Bang Theory is easily accessible to me.  Big Bang?  Well that I’ll just have to continue to watch on my computer.

What we have learned from this experience is that Pandora has become a staple in our house.  We still need our background noise but now it comes in the form of kick ass music.  We have learned that we are certainly able to survive without paying ungodly amounts of money just to have a few TV shows.  We have learned that we have much more control now over what the boys watch on TV and how much TV they watch.  Also, they are more willing to move away from the TV because they know they can pause a show and come back to the same spot later.  Really this has been nothing but a win/win for us.  My only struggle now is trying to finagle a way to be able to catch local stations mainly for news purposes.  The rest I could care less about now.

So thank you Direct TV for driving your prices so insanely high that I finally made the plunge.  I believe that we are already all the happier for it.