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

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!!! 

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. 

Today I am Veruca Salt

Today I am Veruca Salt.  I want it all.  I want it now.  I want life to be perfect.  But a perfect life doesn’t include millions of dollars, a big house, a housekeeper, a cook, a chauffeur, a full time masseuse.  For me, life would be perfect if my son didn’t have autism.  Once a year, usually around the time of his IEP, I get sad, seeing that word all over pages and pages.  But he hasn’t had his IEP yet.  I am filling out the school forms for Alex to start kindergarten in the fall.  I’ve only written the word down a few times.  But what is making me cry is that he isn’t going to get to go to school with his twin brother, or with his big brother.  Alex needs to go to another school that has a special needs program.  For the past two years, he has been attending a separate school from his twin brother, Will.  But they also share a school, too.  Will attends a preschool 5 days a week and Alex attends the same school twice a week, one of those days he is shadowed by his social and behavioral therapist.  So for the last two years, he’s been with one of his brothers at school.  But this fall, Will, and their big brother, Harrison, will be together.  And for the first time, Alex will be alone.  It just breaks my heart.  I tried to work things out with the schools.  I tried to figure out a way to get them all in one school.  But I had to look at each of their individual needs and in the end, this is just what is best for them.  I know that tomorrow, I will be smiling again, and I will be so extremely grateful for all that I have.  But for today, I’m going to wish for something I can’t get.  And then for the rest of the year, I’ll remember all the hundreds of wishes I did get.