Thank You, Alex….and Ferris Bueller, Too

One of my favorite movies of the 80’s was Ferris Bueller’s Day Off.  It was such a fun and carefree movie that you could just sit back, relax, laugh and enjoy.  Surprisingly, it has one of the most profound quotes I will never forget:

“Life moves pretty fast.  If you don’t stop and look around once in a while, you could miss it.”  -Ferris Bueller

Lately, I haven’t been looking around.  I’ve been staring at a calendar, counting down the days til the boys go back to school.  (It’s 19 days away, as of today, August 5, in case you were wondering.)  Now don’t get me wrong.  I love my boys with all my heart and would give up my life for them.  And this summer has been filled with lots of fun and sweet moments!  But having all 3 home with me (they weren’t enrolled in any day camps and I’m a stay-at-home-mom) has been tough.  I felt like I’ve been trapped at home with them, unable to escape.  Or when I do get out of the house, I have to take all 3 of them with me......for everything:  grocery store, Target, the bank, AAA office, all my usual errands.  And it’s exhausting bringing them with me.  They’re always hungry.  Someone always has to go to the bathroom when there isn’t one nearby.  They’re always thirsty.  They get cranky.  They run around clothing racks at stores and almost crash into people.  They all want to ride in the cart. They wander out of eyesight and freak me out when I can’t see them. 

Then Alex gave me a reminder.  Today, for the first time in his 8 years of life, he was able to sit in a movie theater and watch a movie from the very beginning to the very end.  I know most 8 year olds can do that.  But Alex has autism.  His senses get overloaded at theaters.  We’ve tried to bring him in a couple times years ago.  He lasted about 10 minutes before he ran out of the theater.  The theaters are dark.   Loud.  Crowded.  Overwhelming.   It’s a lot for his senses to process.  But I felt bad that his typical brothers couldn’t enjoy a movie theater.  

So with the help of his wonderful ABA therapist, we brought the boys to watch the Minions Movie at a regular movie theater.  We both prepped him.  We reminded him what it was like inside.  Yeah, it’s dark but not so dark you can’t see anything.  It’s loud.  But if it gets too loud, I brought his noise-cancelling head phones.  It’s overwhelming.  But I brought his security blanket to comfort him.  The movie started and at first, I kept my eyes on him.  I was waiting to see the panic in his eyes before he bolted outside.  I was waiting to see fear on his face.  Instead, I saw my sweet little guy staring at the screen.  Smiling.  Laughing.  Enjoying the movie.  After a while, I stopped worrying about him and started enjoying the moment with him.  Half way through the movie, he was concerned that it was night time (the movie started at 3:15pm.)  He was so concerned that he asked his therapist to take him outside to see if it was dark.  About 2 minutes later, they returned to their seats and finished the movie. 

But as soon as the movie ended (before the credits even started) he had to get out.  He couldn’t wait for us to gather our things.  He had to get out.  Luckily, his therapist was quicker than me and his brothers and was able to take him out right away.  A couple minutes later, we follow and I find him outside the theater in tears.  I talked his therapist and Alex.  He had broken down and cried because it took all of his focus and energy to hold it together til the end of the movie. 

I was so proud of him!  I told him I was proud of him.  I wanted to hug him and thank him.  But he doesn’t like attention on him.  At all.  I know I would have made it worse if I made a big deal out of it.  So I just told him, “Good job, Alex.”  Like I tell him after he’s done his homework.  But this wasn’t homework.  This was a huge, momentous occasion.  He has come so far.  Over 5 years of ABA therapy…. speech therapy…..countless therapists….thousands of hours of researching autism and how we can help him…..talking to specialists….reading all autism books, magazines, online articles…..talking with other parents and sharing ideas and resources……holding on to my patience as long as possible.  All we have done to love and support him as best as we can, all his hard work to learn and try hard…….it all had shown like a bright, shining star today.  He was the sun.

Time does move fast.  I still remember the day he was diagnosed……5 and half years ago.  Now he’s 8 years old.  I’m so glad he reminded me to look around today.  Today was a day I did not want to miss.  

I've been faking it.

No, not that.  :)  Something else.  I have been worrying.  I never worry.  I just don’t see a point to it.  It’s wasted energy.  It doesn’t solve anything.  I can’t predict the future.  So why worry about it?  When Alex was first diagnosed with Autism two and a half years ago, I didn’t worry about his future but my husband did.  What was Alex going to be like when he’s an adult?  Will he be able to live on his own?  Will he live with us?  Will he be able to go to college?  Drive a car?  Have a job?  Be in a relationship?  Get married?  Will he be able to have what he defined as a happy life?  My husband learned to let go his “idea” of a happy life for Alex.  He doesn’t need to do all those things to be happy.  We both know that.  So I don’t worry about what is in store for Alex in the future.  My philosophy from the beginning was always:  do absolutely everything we possibly can do NOW so that whatever is in his future will be the best it possibly can be.  So that’s how I roll.  I live in the moment.  Take it day by day.  Do the best I can.

But for the last few weeks, I have been pretending.  I secretly have been worrying.  I haven’t slept well in about 2 or 3 weeks.  We have a huge transition coming up in our family.  Alex and Will (twins) will be going into kindergarten tomorrow, but in two separate schools.  Will is going to be with his big brother, who will be in second grade.  Alex is going to another school because they offer a special needs program that we feel is best for him and is not available at the other school.  I don’t worry about Will at all.  He’s going to a school that he’s already familiar with, he knows the teacher, and he has 2 of his best friends in his class with him.  And to boot, his big brother, Harrison, will be in the school, too.  But Alex is going to a brand new school, completely unfamiliar to him.  We’ve prepped him as much as possible.  We had a few playdates at the school, at the playground.  So he’s familiar with the place.  We took him to the school last week to meet his program supervisor, his intervention specialist, his speech therapist and his teacher.  He got to see his classroom twice.  Thank goodness he has a friend from one of his preschools who will also be in his class.  (Alex calls him his best friend.)  :)  So I’m grateful he won’t be alone.  But I still worry what the first day (week, month) will be like for him.  He’s going to be in a mainstream, typically developing kindergarten class.  There will be a total of 27 kids.  (His previous schools have had 8 or 12 kids in his class, with at least 3 teachers.  At the preschool co-op, there was a max of 22 kids and I was a working parent on those 2 days he attended, and his brother Will was there, too.  And there were 2 teachers and 6 working parents on each day.)  He will have his intervention specialist with him and his friend pretty much the entire time he’s in class.  And of course, the one teacher will be there.  And I was able to arrange for his ABA therapists to assist him in school 3 hours a week, divided into 2 sessions, to help him transition between activities, and to help him socialize with his peers.  We’ve talked about the “exciting” new school a bit, but not too much.  I didn’t want to make him anxious.  We went to the store and had him pick out a new shirt to wear on the first day of school.  Of course, he has a new “Angry  Birds” backpack and lunch box.  :)  So I feel like I’ve done everything I could in the “now” moment.   I know it.  I feel confident that I did my best and gave him my all.  Now, I need to let it go.  I just have to stop worrying and remember what I believe in my mind and in my heart. ……my philosophy:  do absolutely everything I possibly can do NOW so that whatever is in his future will be the best it possibly can be.  So in 8 hours, when he walks into his new classroom, it’s going to be the best it can possibly be for him.  And maybe, just maybe, I’ll be able to stop faking that I’m not worried, because I truly won’t be. 

Nostril Fun

About three weeks ago, one of my sons, Alex (age 4), kept fussing with the left side of his nostril.  He tried to blow his nose and he kept putting his finger in it.  I grabbed a flashlight and tried to look inside, but he cried and screamed like crazy, so I gave up.  I figured it was just a really big booger that he would eventually pick out and smear somewhere where I least expect it.  About a week later, his nostril start to drip a little and I thought his allergies were acting up.  A few days later, he got a hold of a red marker (washable marker....only type allowed in the house) and scribbled on his leg, rubbed it in his belly button, and rubbed it in his left nostril.  I wiped him up and all is well.  The next day, his nostril is bleeding just a little.  And it's still runny, just on that side of his nose.  I give it a few more days and finally decide to take him to the pediatrician.  We find out that there's blockage but she can't tell what it is (could be mucus) so she sends us to the pediatric EENT doctor.  We go there today and the doctor says there's some kind of foam/sponge inside.  I immediately remember the boys playing with these toy capsules that the boys would soak in water and they would grow into foam shapes of dinosaurs.  I hold Alex down and the doctor grabs some special tweezers and pulls the foam out and.......there is this horrendous smell that fills the room.  Not quite like a poopy diaper, but more like rotted food, but not super pungent either.  Hard to describe.  Apparently, this moist foam had been sitting in his nose for about 3 weeks, collecting all sorts of interesting bacteria.  His nostril immediately had a read stream of blood gushing out that lasted about a minute.  It stopped and the doctor said his nostril was swollen inside but will heal on its own in the next few days.  Six years of having kids and this is the first time one of them shoved something up his nose that got stuck.  Not bad!  Our pediatrician also told me that she had a patient who came in and had something stuck up his nose for two years!  Hey, I only waited three weeks!