Just Maybe I'm Doing Something Right

Tonight, I pissed off my 10-year-old son, Alex.  As many of you know, Alex was diagnosed with Autism just before his third birthday.  We’ve had our ups and downs over the years.  But overall, luckily, things have been more up than down.  Alex started 5^th grade a few weeks ago, along with his twin brother, Will.  And their big brother, Harrison, started middle school, too.  I had the summer off with the boys and went back to work last week to teach preschool.  Things have been a bit crazy in our routines lately.  Alex had a few rocky days but is really doing great now!

Tonight, after the boys had brushed their teeth and were getting ready to read and go to sleep, Alex decides that he wants to drink chocolate milk.  I told him no.  I told him he could drink water or even plain milk but no sugar before going to bed.  He didn’t like what I said and decided to stomp his feet all over the house and slam doors.  After the third door slam, I went up to him and with my firm voice, told him that he needs to stop.  I reminded him of his drink choices and if he didn’t choose one, then he just needs to read his book then go to sleep.  He still wasn’t happy.  I had a filthy kitchen to clean (that I knew would take 2 hours) and I just couldn’t talk to him anymore.  He started to cry and pout.  I told him to go talk to his dad for a while.  He did.  But he was still upset.  He came up to me in the kitchen, in tears, and whispered, “I hate you.”  I calmly replied, “Well, I love you.  You sometime make me angry.  But I always love you.”  He didn’t reply.  He just walked away and went back to his room.  About 15 minutes later, he comes back to the kitchen, still with a few tears in his eyes, kisses my arm and hugs me.  I hug and kiss him back.  Unprompted, he says, “I love you.  I’m sorry.”  Through my teary eyes, I said, “I love you, too.  It’s okay.”  He gave me another kiss and I hugged him again and said goodnight.  He went back to bed and is asleep. 

I honestly do feel like I’m doing the best I can for Alex.  I truly believe in early intervention and I’m grateful for his team (teachers, speech therapists, behavioral interventionists) who help him in every way they can.  But every now and then, I question myself.  I wonder if I am truly doing everything I can for him?  Or am I missing something?  Maybe I’ve gotten too comfortable with how much easier things have gotten for us over the last few years.  But this moment with Alex tonight just confirmed that, just maybe, I am doing something right.  Actually, no.  There’s no maybe.  I know I’m doing something right.  And I’m pretty f*cking proud of myself. 

Big Milestone for All

Today was a milestone for us; at least, in our family.  For the first time ever, I took my 3 boys to a movie theater all by myself.  Years ago, when Alex was in preschool, we tried to take him and his brothers to see a movie.  Alex couldn’t do it.  The theater was too much stimulation for him.  He became distressed and I took him out of the theater while Bobby stayed with the Harrison and Will to finish the movie.  After that, we stayed away from movie theaters and just waited for movies to come out on DVD.  Luckily, a friend of mine told me about a drive-in movie theatre that was about 30 minutes away.  We tried that and it was perfect!  We were able to control how loud the sound was.  The boys stayed in the van and so it wasn’t too crowded for Alex.  And being outside, it wasn’t as dark as an indoor theater.  It worked out so well and that’s how we took the boys to watch movies.  We did that for about 4 years.  A couple of years ago, when Alex had ABA therapy, I talked to his team and suggested a goal:  to have Alex be able to watch a movie inside a theater.  They thought it was a great goal and they worked with him on it.  We talked with him about it, we prepped him, we bought him head phones to help minimize the sound.  We finally felt he was ready to try it so his Behavioral Interventionist and I, along with Harrison and Will, brought Alex to see a movie.  I don’t remember the movie but what I do remember is that Alex did great!  He did have to take a break during the movie and his interventionist took him out for a few minutes but he was able to return and finish the movie!  It was a fantastic day!  So ever since then, I would take the boys to see movies indoors.  But I was always with another adult, either Bobby, my mom friends, or Alex’s BI’s.  Never by myself.  What if Alex had a meltdown or sensory overload?  Would I pull all boys out of the movie (and have Harrison and Will be disappointed or angry that their brother is different?)  I wasn’t comfortable of the idea of leaving the two of them alone if I had to stay outside with Alex.  Flash forward to today, June 30, 2017.  All 3 boys wanted to see Despicable Me 3.  Bobby had to work and he actually didn’t want to see the movie.  So I bought our tickets a couple days ago and asked some friends to join us.  But everyone had scheduling conflicts so I decided to take a deep breath and just go for it.  I felt that Harrison and Will were old enough to leave alone in the theater, if needed.  And the last movies we had seen, Alex was able to handle them.  Armed with popcorn, candy, Icees, frozen lemonade, a pair of headphones and a blanket (Alex feels more secure with a blanket wrapped around him during movies) we went into the theater.  It was crowded but I bought seats towards the top, on the aisle, so we could easily dash out, if needed.  It wasn’t needed.  Alex stayed the entire time!  No meltdowns!  No distress!  He was comfortable and enjoyed the movie!  As I looked over at my 3 boys, watching the movie, I thought, “Wow, Alex has come so far!”  Then I realized, by having confidence in Harrison and Will to stay safe in the theater on their own, by having confidence in Alex to be able to handle watching the movie the whole time,……I have come far, too.  I've learned to trust my boys and trust myself and let go.  With Alex, I tend to hold on pretty tight with him. And by default, I hang on tight to Harrison and Will, too.  Today, I learned how to loosen my grip.  Just a little bit.  Not sure if I’ll ever be able to let go.  But does a mom ever?  

Dear Will

Dear Will,

I hate that you are my “middle child.”  Technically, you aren’t.  You have a big brother who is almost 2 years older.  And you have a twin brother.  Although there are 3 of you, there shouldn’t be a middle child.  But for our family, I think it’s you. 

Your big brother has a learning disability.  He needs extra academic support.  He gets that help in the form of a resource specialist, a speech therapist and a tutor.

Your twin brother has autism.  He needs additional support.  He gets that help in the form of an inclusion teacher, an intervention specialist, a speech therapist, and a few behavioral interventionists.  

But you….you don’t need any additional support.  You don’t have an IEP (Individualized Education Plan) like your brothers do.  You don’t have additional challenges.  You’re fine.

After having you attend a school with your big brother for the last 3 years, I decided it was time for both of you to join you twin brother at his school.  I kept you all at separate schools because I really felt that was what best for all of you.  But we reached a point and I have come to realize that you all need to be together at this one school.  

By making this change, I know that I have taken you away from your best friend, the school that you love, the friends that you have fun with, the teachers who adore you.  I know you are happy at that school.  And when the time came for me to tell you that you were changing schools, you expressed your disappointment but maturely and graciously accepted the change.  You didn’t throw a tantrum.  You didn’t cry.  You didn’t even pout.  You accepted this decision so perfectly.  And I just so appreciated this from you.

Because I’ve given so much to your brothers all these years, I wanted to throw you a bone.  I thought, the least I could do was get you to be in the same class as your twin brother.  I know you can be really shy sometimes.  And if your twin brother was there in your class with you, you wouldn’t be alone.  I wanted to give this to you.

But after discussions with your twin’s teachers and specialists, we felt it would be best that you were not in the same class.  Your twin has done so well on his own and everyone was concerned that having you in the class with him could change all the great progress he has made all these years.  I understood.  And I agreed with them.  

It breaks my heart that I couldn’t give this to you.  You never ask for anything.  You don’t need anything.  And I’ve given so much to your brothers and I really wanted to give you this one thing.  And part of my feels like I’ve failed you because I couldn’t do this.  

I know you’ll be okay.  You always are.  I don’t like that you couldn’t rely on me this time.  I don’t like that I have to rely on you and your strength to be able to handle this new situation I’m forcing on you.  

I’m sorry that you have become the middle child.  The one sort of lost in the shuffle. 

But know that I love you just as much as your brothers.  Know that even though you need less from me, I give you all I can.  I will never lose you in the shuffle.  

Thank you for being the strong 8 year old kid that you are.  Know that you give so much to me.  And know that you are the best middle child I could have ever hoped for.

Love,

Mom

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.  

Stellar

We have had a stellar week!  Alex (my son who has Autism) was able to, for the first time in his life, have dental x-rays taken!  This was a huge step for him!  He has been going to the dentist since he was a year old.  Sure, he didn’t have all his teeth but I wanted to get him comfortable with going to the dentist regularly.  When he was diagnosed at 2 and a half years old, things got tough.  He’d cry and scream when the dentist tried to look at his teeth.  He’d kick and hit me.  I would have to hold him down.  He’d cry so much he would throw up.  But last week, we got to the dentist and he just hopped on the dentist table/chair.  He let the dental hygienist clean his teeth.  The dentist came in and he let her do her examination.  He had no complaints.  He did just as his twin brother, Will, was doing right next to him.  And I just sat there watching them, thinking , wow, this is what it’s like for a normal parent!  And Alex was on a roll so his dentist and I decided to see if he could do x-rays.  And he did!  No complaints!  No tears!  It was awesome!

At the end of last week, Alex had a field trip with his class, along with the other second graders in his school.  They went to The Feast.  Every year, the second graders go to Roberts Park (surrounded by redwood trees) and sort of re-enact Thanksgiving.  Kids dress up as Pilgrims or Wampanoags.  (Alex wanted us to dress up at Wampanoags.)  They go to different stations to help prepare the feast consisting of venison stew, rabbit stew, vegetable soup, clam chowder, duck, and other foods I can’t remember.  There were also stations for crafts and candle-making.  Every 30 minutes, they would rotate.  He followed along with his classmates as he was supposed to.  I barely had to shadow him.  Even his Intervention Specialist didn’t have to work with him much. 

But the highlight of the day was the program.  Each kid (about 72) had to memorize several sentences and recite them with a microphone in front of dozens of parents and teachers.  Alex does not like attention on himself.  At all.  (A few weeks ago, his name was drawn for a prize and his name was announced over a school loud speaker and he freaked out.  It took his I.S. 20 minutes to calm him down.)  No, he does not like all eyes on him.  So, of course, I’m a tad worried.  He’s practiced with me and with his class.  But it isn’t the same as actually doing this in front of so many people.  When it was his turn to speak, I held my breath and watch him walk to the front and speak his lines.  Perfectly.  It was one of the most beautiful things I had ever seen.  I cried.  I’m crying as I type this.  I was so proud!  All of our hard work has really paid off!  All the hours of therapy, doing research, trying to find out what was best for him, giving him our best…. it all showed at that moment.  I’ll never forget it!  It was the perfect ending to a stellar week!

Yesterday, I had an unintentional reminder of what is normal.  Since today is Veteran’s Day and the schools are closed, a friend invited us to watch a movie in a movie theater.  At first, I jumped at the idea!  Heck, Alex is on a roll!  He’s doing so great!  We could go to the movies just like other normal families do!  Then it hit me.  Wait, we aren’t that kind of normal.  Alex isn’t ready for that yet.  He needs to be prepped.  (We tried to take him to a theater a few years ago and it was awful.  It was sensory overload for him.)  I need to come back to reality and realize that we can’t jump into things like that.  I need to make a game plan, just like I did with his dentist.  He needs to practice, just as he did for his speech.  We need to do things little by little.  Maybe I can take him to the theater on a less crowded day.  Maybe I can schedule it when his Behavioral Interventionist is with us.  Maybe we can do it with a movie he has already seen before.  I need to plan this out in order to set him up for success. 

So now that I have come down from Cloud 9 and I’m back on Earth, I realize that our normal is different from others.  Having 4 weekly ABA therapy appointments is normal for us.  Having my 3 boys in 2 different schools is normal for us.  Going only to drive-ins instead of an indoor movie theaters is normal for us.  Attending yearly IEP meetings is normal for us.  Attending quarterly meetings with his intervention team is normal for us.  Yeah, our normal is different.  But all the accomplishments our family has…..those accomplishments may be normal for others…..but that normal is stellar to us!!! 

Let It Go

Let It Go.  Yes, just like the title in the song from the movie Frozen.  Those 3 words have a lot of meaning for me tonight.  You see, tomorrow, my son Alex (who is on the Autism Spectrum) is going on a field trip with his fellow first graders.  He's been on many field trips in the past.  And I have chaperoned each and every one.  He's always ridden in my van with his classmates.  He is my priority for field trips, not his two mainstream brothers.  I know they'll be okay.  But I'm always there on Alex's trips to watch him; make sure he doesn't wander off; make sure he doesn't have a meltdown; make sure he doesn't have sensory overload (i.e. things are too loud or too crowded.)  Just make sure he stays safe.  But tomorrow I have chosen not to chaperone his field trip.  I did my best to plan it out.  He is going to be in a place that he is very familiar with.  So I know he's comfortable there.  The place is only a 10-minute drive from his school.  So if he's in a car he is uncomfortable with, it'll be for a short period of time.  And I feel he's very comfortable with his teacher, intervention specialist and his friends in his class.  At first, I told myself, "Yes, I can trust his teacher and specialist.  They will take good care of them."  And yes, I do trust them.  But I realized tonight that it isn't just them.  I trust Alex.  I trust him not to wander off.  I trust him to control himself to minimize a meltdown.  I trust him to speak up if things are too loud or too crowded.  I trust Alex to stay safe.  Will I still make him hold my hand when we are in a busy parking lot or walking across a street?  Yes.  Will I still do head counts every 10 minutes when I'm at the park with him and his brothers?  Yes.  But for tomorrow, I will trust Alex.  I will let it go.  And he's going to be just fine.

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.