Saturday, November 14, 2015

An Email From Peter

Peter sent me an email from school yesterday:

Mom, today in activity period, I was on a website for some research for my Spanish project. There was an ad for The Mighty. And I clicked on it and searched for your letter you wrote me that you posted last year. []  It brought me to tears while reading it. And even now as I type this I'm tearing up. I just wanted to say thank you for that letter. It reminds me of how thankful I am for how I am today after that rough first years through birth to Kindergarten. When I read the line "I wish you had more playgrounds as a toddler" is what gets me every time. Whenever I say or read this, I tear up. I can't thank you enough for all you've done.

I love you

Be still my heart.

One of my biggest concerns in raising a child with autism is raising a little brother of a child with autism.  Does he get enough attention?  Is he missing out on anything that I can help with?  Is he happy?  Does he feel loved?

Well, this email from Peter not only warmed my heart and made me cry, but it showed me that he is doing just fine.

Last week, TJ, Peter and I all spoke to UVM School of Medecine's second year students for their disabilities awareness week.  We are so fortunate to do it every year.

The students asked TJ, "If you could tell us one thing about living with autism, what would it be?"

TJ answered, "That it is a gift."

I think you're right, TJ.  As hard as it can be, it is indeed a gift, in many ways.

For all of us.

Wednesday, November 11, 2015

An Epiphany from a Former Boozer

I've had an epiphany.

I'm a super-sensitive person.  Always have been.  I cry at the drop of a hat - happy and sad times.  It's annoying as hell.  It's one of those things about myself that has been the hardest to deal with.

I have realized that one of the hugest reasons that I drank so much was to stop feeling so much.  I feel everything very strongly.  Everything.  Stress, joy, insecurity, fun, happy and sad.  Drinking helped to quiet down and numb all those feelings that I was constantly experiencing.

Except when it didn't.  Sometimes I felt things even more strongly and reacted in a way that I wouldn't have, without the booze.

I embarrassed myself a lot.

But one of the best things about my quitting drinking is not only coping with all those strong feelings, but accepting them as a part of who I am.  Without apology.  Without regret.  Without shame.

So now what you get is 100% me, like it or not.  Take it or leave it, it is what it is.

And I must say, not only do I like myself more, but I respect myself more.  A hell of a lot more.

And if you don't respect me, I don't care.  For the first time in a long time, I have enough respect for myself to more than cover for those who have no respect for me.

How's that?  Not to shabby for little ole' me, right?

Also, I gotta say, no more hangovers kind of really rules supreme.  Those sucked.

And seltzer has come a long way.  Thank god.

I'm so deep!

Wednesday, October 21, 2015

You're Gonna Hear Me Roar!

I was in my zumba class yesterday - a class I don't usually take, and am not familiar with the music.

TJ's science teacher, from last year, was there too - side note.  Love her.

Anyway, Katy Perry's "Roar" came on, and when the song was done I said to TJ's faboo science teacher, "That is TJ's victory song!"

The funny thing is, I didn't even realize that TJ HAD a victory song until I said it out loud.

But let's think about it - I've always been a musical person.  And every time TJ succeeds at something, or hits a milestone, or accomplishes something that he had been struggling with, that is the song that sums up how it feels for me.

Keep in mind, this isn't HIS victory song for him.  This is MY victory song for him.

I think it's something that I have this song symbolizing his success, like a soundtrack of his life.  I think that as time goes by, I will have more songs in mind that add to his soundtrack.  That's just how my mind works, I guess.

And Peter has a song, too.  Katy Perry's "Firework".  What is it with me and Katy Perry?

I think I'll tell these guys that I have victory songs for them when they get home from school....I can't wait to see the look on their faces.  Another "oh god our mom is nuts" expressions.

And I love every second of it.

Friday, October 9, 2015

Feeling Alone with Autism, Again

Yesterday was Parent/Teacher conference day.

Our son, TJ, is 15 and has autism.  We are used to our parent/teacher conference days by now - we have already met his teachers at open house, and at a team meeting before that, organized by his special educator.  

This is all routine for us, and has been for a while.  And we are in such close contact with TJ’s educational team that at these meetings, there are no surprises.

What was new for us last night, however, was the Adult Services/Transitional informational meeting that we were invited to, and attended, after our conferences with TJ’s teachers.

TJ is a sophmore in high school, so we were grateful for the opportunity to learn about what possible services and programs could be in TJ’s future.

There were a handful of parents there;  in fact, there were more presenters than families.  At first, I thought this was great - there must be so many opportunities for kids like TJ upon high school graduation!

Then, one by one, the presenters spoke about the organizations they represent.  Every program sounded wonderful - employment and educational opportunities with organizations that think of the whole student - academically, socially, and including life skills too!  How great!

As I sat there and listened, however, I began to feel that slow creep of fear.  There is a lot to know about these programs.  And this part of his life always felt very far away - I don’t know if we are ready.  And a lot of the employment they are speaking of are jobs in supermarkets, or restaurants, or front desk jobs at gyms…TJ loves animals and really knows so much about them.  Where would he fit in?  Would he fit in at all?  Do we live in a terrible area for him, with no place to fit his interests, and do we have to think about moving?
All of these thoughts came flooding to me at once.  And then, like a swift kick to the head, came another thought:

I don’t think TJ will have the typical “apply to college and wait for acceptance letters and celebrate with your family when you make your choice” experience.  

This hurt.  A lot.  And I don’t even know why.

I learned a long time ago that most of the experiences that typical kids have, TJ doesn’t.  I have mourned these losses and accepted them, and have learned to treasure every small success he has had, because for TJ and for us, they are not small at all.  

I thought I could handle anything.  I thought I was prepared for whatever came next.

Turns out I’m not as prepared as I thought.

And then I thought of my friends, waiting in line at the gym where parent/teacher conferences take place, to talk to their kids’ teachers.  

And I suddenly felt very left out, very different, and very alone.

I know, logically, that I’m not alone.  Sean, my amazing husband, was sitting right beside me.  And if he was feeling any of these same feelings, he wasn’t giving it away at all.  

I also know that my experiences at those conferences in the gym are similar to that of my friends’ experiences…..right?  Aren’t they?  Or am I oblivious to the fact that there are discussions that parents of typical kids have that we weren’t having?

And in that crowded classroom, I felt like an outsider.  All by myself in that busy, bustling building.

Do we get to make college plans like other parents?  I know that if we do, it certainly won’t look the same.  We will have to work with an outside agency, whose help we need to plan separate living arrangements, and forced socialization, and learning how to share a kitchen, and learning how to take a bus around town.

And that’s just the tip of the iceberg.  

All this time, I suppose that I thought that TJ would go to college, discover his passion, and magically translate that into a job.  It was always my dream for him.  But what if my dream and his dream don’t match?  They most likely won’t.  He probably won’t want to leave home, much less leave the state, and I dreamed that he could go to college anywhere he wanted.  

He probably will always want to stay close to home.

I feel like I’m on the edge of a cliff, looking over, and not knowing what comes next.

And I suppose in some way, I am.  The future is unknown.  The things we have to consider for TJ’s future are much more detailed than that of your typical kid.  The planning has a lot of hands involved.  There are a lot of new things for me to learn as this next big step approaches.

I’ve felt this way before - just before TJ started kindergarten.

So today, even though it hurts, and I feel like an outsider compared to other parents of sophomores, I know that soon, all those tasks that I have to perform for my boy will feel routine.  As I learn more and more about our path, and the process we will have to go through, I will feel more secure, and less alone.

So forward I go, one foot in front of the other, comforted in the fact that although we are on the edge of some very new experiences, we will soon hit our stride, and do just what needs to be done to have TJ just where he needs to be.

Just where he needs to be.

Monday, September 28, 2015

Dear Mr. Biker Dude

Dear Mr. Biker Dude,

You probably don’t remember me, but I remember you.  My son TJ does, too.

We were in that red car at the red light as you waited to turn left into the shopping center last week - we were opposite you.  We were going straight.  Or we were trying to.

I’m the one who leaned out of my window to talk to you - to plead with you - as you blocked the intersection so your 100 biker friends behind you could turn left into the shopping center after your left turn green had turned red.  After our red light had turned green.

Do you remember us?

You blocked the intersection so no one but your buddies could move.  Was there an emergency at Big Lots you all had to get to in a timely manner?  Were you desperate to get to the bank before it closed in 3 hours?  I’m not sure what the emergency was, but it must have been serious for you to think you all had priority over everyone else on the road that day.

I’m sure you didn’t know that my son TJ, who, to someone who just glances at him as he sits in the front seat or my car, has autism.  

Until I told you, that is.

I’m sure you didn't know that he was having a hard time that day as we sat there, knowing how close to home we were, as I prayed that my son, ticking time bomb that he was, could hold out just a little bit longer until we were safe at home, where he could explode in a safe place.

I’m sure you didn’t know that just about 10 minutes before, we had dropped off his father at the airport, where TJ and I said goodbye to our rock for the next two weeks, after he had just returned home from a week long trip the night before.  That TJ got just a taste of what it was like to have his Dad home again before he left again.  That he feeds off of the energy around him, and that that energy contributes to his moods, his stability, and his success.  At school and in his every day life.

I know for a fact that you didn’t see his tears in his eyes, the ones he tried to hide from me, as we drove away from the airport and headed home.

I also know for a fact that you heard my words as I yelled out the window to you, as you held up your hand to ensure that I would “stop” and not plow you over as you illegally blocked the intersection, “Please please let us go through - my son has autism and I need to get him home.  Please.”

I know that your heart must be black as pitch, which you showed me when you shook your head and replied to me, “That’s too bad.”

Then I started trying to soothe my boy, as he started to shake.  He got scared.  Did you know that?  He said “Mom, why is he mean?  Is he going to hurt us?”

After we got home, and after I gave him some deep pressure to try to comfort his overloaded sensory system, and after he had visibly calmed down, he asked me why bikers were so mean.

“They’re not,” I told him.  “We just happen to come across one who was very mean and selfish.  But TJ, you know Suzi and her husband?  He’s a biker - a really nice one.  Remember when you drew pictures with him?  He’s a great artist, just like you.  And remember Diana?  She and her husband are bikers, and they both are so nice!  Remember when she used to come over to hang out with you and Peter?  We see them at the pool all the time.  They are nice bikers.  They aren’t all mean.  We just had some bad luck today.  Do you understand?”

He did.  He’s amazing like that - he has a tendency to think the best of people until they show him otherwise.

So just in case you were wondering, Mr. Biker Dude, TJ did get scared, but he knows that not all bikers are as mean as you were.  He knows not to judge a group of people by one bad apple.  He knows that you all weren’t going to hurt us, but that you were breaking the law and doing something wrong, and that it’s not an ok thing to do, even though you all didn’t get caught.

He also knows that you have a very small mind and a very small heart.  And maybe that’s just my angry influence on his opinion, but hey, nobody’s perfect.

I hope to never see you again,


Friday, September 18, 2015

To TJ's Team - I just thought you should know....

I have read a lot of articles lately on what to ask your kid to get the best information out of them at the end of their school day.  Anything but "How was your day?" to which you'll get "fine" and not much else.

I thought I was doing a pretty good job.  TJ and I would chat about what happened and who he spent time with and who he ran in to and what he is studying for the whole ride home.

And I STILL missed a biggie.

Two days ago I got a call from TJ's special educator (SM - the best).  He told me that TJ is really stressed out in one of his classes that he is taking as an elective.  He said that the structure of the class is different than it was last year, and required a background that TJ just didn't have.  It wasn't the fit that he thought it would be for TJ.

I was floored.  Not because TJ wasn't doing well in a class, but because in all the conversations TJ and I have had about the class, I got no indications of his rising stress levels.

Apparently, SM and his para educator were seeing his rising stress levels very clearly, and wanted my permission to take him out of this elective class, with credits he didn't need, and find a better fit.

I immediately said yes, confident that they would find something for him to occupy his time in a less stressful, and therefore more productive, manner.

And of course, they did.  He is enrolled in an art class as an independent study.  I got emails this morning from SM and the para educator saying what a better morning TJ is having, and what a great switch this is for him.

And I almost cried out of happiness, and feelings of good fortune.

We are so lucky that TJ is in such capable, caring, amazing hands at his school.

We are so lucky that these incredible teachers can see things throughout TJ's day that we cannot see.

We are so lucky that they are proactive enough to prevent a complete meltdown.  They jumped at the first signs of stress to investigate what is the source, and what, if any, changes needed to be made.

Sean, Peter and I are so grateful to these wonderful people, at his wonderful school, taking such good care of our wonderful boy.

And I just thought you should know.

Saturday, September 5, 2015

Things I Already Knew but Need Mentioning

1. Sean is the biggest dreamboat of all time ever.  EVER.

2. Diverticulitis sucks.  Big time.  Avoid it if you can.

3. Liquid diets suck too.  Holy brutal.  When I almost kiss the doctor who upgrades me to crackers, it's too long on liquid diet.

4. Your colon is your friend - treat it accordingly.

5. TJ should NOT play The Simpsons trivia before bed, unless we want to find him up at 12:30 looking for his Simpsons Book.  God knows how long he was awake but it must have been late because he's still asleep now.

6. My kids are more flexible when I'm sick than when I'm not.  Hmmm.

7. Sam sneaks on the couch to sleep at least 4 times a day.  And looks at me like I'm crazy when I scold him to get down.  Every time.

8. Do not watch Food Network if you are on any kind of restricted diet.  I forget this one all the time.  It's like I have mind-erase when the diverticulitis ends.

9. I actually have missed exercise.  Kudos to my exercise-inspiring friends who have helped me make this a regular part of my life.

10. A lump in your lower abdomen should not always scare you - it's not always the scary tumor you are making up in your imagination.  Sometimes, it just means that you're full of sh!t.