Wednesday, September 17, 2014

Autism and High School – the Honeymoon is Over




Remember TJ’s fantastic start to high school, where he was so happy and excited and my husband and I breathed a huge sigh of relief?  Remember that?


Well, we shall now refer to that as “the honeymoon period”.  And baby, it’s over.

How could I have forgotten about the honeymoon period?  That amazing week or two when I actually think we are in the clear?

Right after the honeymoon period comes reality.  And it comes crashing in.  And every time it comes crashing in I wonder to myself, how could I have been so foolish to think we were all set?

After the honeymoon period is where the real work begins.

Last week I met with TJ’s new school team – his special educator (who I think we should now refer to as our saving grace), his teachers, and his instructional assistants.

Talk about a rude awakening.  TJ’s behavior in class had regressed to that of his former 6th grade self. 
That’s when the light bulb went off – HE IS STRESSED!  I had no idea how stressful this new school beginning was for him!  TJ does not communicate these feelings with words as much as he does with his behavior, as he is so eager to please everyone.  He would never admit his stress level to anyone.  But after gathering all the input from the school staff, the problem was clear.

I was sad.  But only for a second.  Then I was relieved…thank god we have the problem targeted!  Now we can start to solve it!

And solve it we are, as a team.  Clear communication, and lots of it.  New folder systems so homework assignments are not missed.  Bi-monthly meetings with his special educator so we can touch base on our home and school progress.  Emails emails emails.

That time after the honeymoon period used to make me feel so sad, as if I had somehow failed as a parent.  Now I am empowered by it, fueled with information to give my boy the greatest chance at success.  

I guess you can say we both have grown a lot, my TJ and I.  And we both are still learning.  Everyday.

Thursday, September 11, 2014

Keep Calm and Carry On

So after a fantastic start to a new school year, the novelty has worn off and both my boys are exhibiting signs of stress.  Reality is setting in.  Which is totally manageable....except when it's not.  My job has been more bomb squad than mother lately, diffusing problems between and among these brothers over and over again. 

So after a morning filled with explosive close calls, after Peter is safely deposited in the middle school and I finally get to the front of the high school drop off line in my car, I notice that TJ's back pack is looking a little light.

"TJ, do you have your binder?"
"UGH!  It's at home!"

Now I see his frown and his eyebrows furrowed, as my Mr. Perfectionist's morning is ruined.

This happened yesterday, too, except yesterday it took me over 20 minutes to find his binder after tearing the entire house apart looking for it.  Eventually I found it in the basement near the laundry.  Of course...why didn't I look there first?

So I asked TJ if he knew where he had left it....while the car line behind me is getting longer and longer and TJ is standing outside of the car.

"I left it at home!  I just said that!  You never listen to me!!!"

Deep breath.

"No, sweetie, I mean do you know which room at home?  It took me a long time to find it yesterday."

"AT HOME!  I DON'T KNOW!!!"

Realizing how quickly this is escalating, I give TJ my warmest, calmest, most loving smile as I tell him to head in so he's not late.  Not to worry.  I will go home, find it, and bring it back to him right away.  Breathe deep, TJ, everything is fine.

So he breathes deep and closes the door.  He's still frowning as he turns away to walk into the school.

So I drive home like a crazy person, find his binder (and his math book, too, by the way), get back in my car and drive back to the high school.  Of course I'm behind the only person in the neighborhood who thinks 15 MPH is a totally reasonable speed.

I get to the high school, park, and head in.  First bell hasn't rung yet and the lobby is packed with kids.  I look around - no TJ.  I walk further into the crowd and look some more...no TJ.  I see one of TJ's friends who says hello, and I ask him if he has seen TJ.  Nope.  No one has.

Now a little flame of panic is lit in my belly.  TJ has been known to bolt on occasion if he is upset and wants to go home.  He was upset enough at drop off that this was a very real possibility.

I head into the office to the lady behind the desk who does the paging.  I tell her my son forgot his things and can she page him please?

Sure, she says, leave them right here and I'll make sure he gets them.

No, I say.  He has autism and was upset when I left him here...I need to lay eyes on him.  He sometimes bolts when he's upset.

OK, she says and picks up the phone.

Whew...I think.  She's paging him.

No...wait...she's not paging him, she's making a phone call.

SHE'S MAKING A PHONE CALL?!?!  Didn't she hear me say he bolts?  Hello?!?!  What kind of place is this???

I begin looking around desperately for someone who can help me.  Panic is rising faster in me as I think of him wandering around this part of town he has never walked in by himself. 

Finally I lock eyes with the receptionist who says, sweetly, "Can I help you?"

"Yes, TJ Jordan forgot his things, he has autism and was upset when I left him, and I need him paged right away.  There is a chance he has bolted."

"Oh, yes, TJ.  I'll page him right now."

THANK GOD.

She pages him, and in less than a minute I see him walking towards the office.

It's everything I can do to not bust out in tears.  But I hold it together as he enters the office.

"Hi, buddy!  I'm so happy to see you!  I have your binder and your math book.  Where were you?"

"Hi mom!"  And there's that smile.  "I was in the art room.  Thanks for bringing me my stuff."

"TJ, I was worried for a second there that you took off."

"I didn't take off, mom, I'm right here."  And that smile, again.

"OK, bye mom." and off he goes, before I can even say, "Bye sweet boy.  Have a good day."

So the moral of the story is, there is a time for calm, and there is a time for panic.  I still can't tell the difference sometimes.  But regardless, in times of trouble, I have to remember to follow my own advice that I gave to TJ earlier....

Breathe deep.  Everything is fine.




Friday, August 8, 2014

We Are Still in Holland

Have you heard of that written piece, "Welcome to Holland"?  It's a beautiful descriptive piece about raising a child with a disability.  If you haven't read it, you really should.  Read it here.

Isn't that nice?  Sometimes it has brought me to tears.

Well, folks, here's what they don't tell you at the end of that piece....

YOU NEVER EVER LEAVE HOLLAND.

It's true.  Yes, the time of diagnosis is devastating, and makes you feel like your planet is off its axis.  And it is.  But all this becomes your new normal.  You adjust.

But every now and then, you get smacked in the head with the fact that you are still in Holland.

TJ's second grade arts night when the rest of the kids were pulling their parents out of the audience to dance that cute little Chinese dance they learned in music class?  Yeah - I was standing in a windmill waving at the other families who got to dance with their kid.

In actuality, we were fleeing the premises, as TJ was showing signs of meltdown.  He was DONE.

That play in 4th grade, when all the school families were shoved into the High School auditorium for the play that every kid was in?  We were tiptoe-ing through the tulips in Holland.

We never even made it out of the house.  TJ barely made it through dress rehearsal and declared "I'm not going back there!  Don't make me go back!"

(Yes, I know, the whole night was really really long, and everyone we talked to said how lucky we were that we didn't have to go.  Well, it didn't feel lucky.  It felt like we were far, far away from everyone else.)

And now that TJ is a teenager, while every other teenager is really trying to spread their wings, hanging out with friends, going to the mall, cooking by themselves, getting dropped off at the movies with a buddy, we are tucked in our house speaking Dutch.

No offense to the Dutch, of course.  I'm sure it's a lovely language.  But sometimes, dammit, it bums me out that we don't get to watch TJ go through all these typical teenage things.

Now don't get me wrong - we have amazing experiences on this crazy journey called autism.  TJ and Peter were alone last night at home while Sean and I went out to dinner!  In a different town!  No texts from them at all!  And they didn't kill each other or burn down the house!  I believe in miracles!!!

And TJ is spreading his wings in his own way.  He walks the neighborhood all by himself.  Usually he takes a bag of goldfish crackers with him, so at least he's properly carbo-loading, thank god.  And he is doing chores around the house, too.  Yes, he puts the dishes away in places I never would have thought of, but it makes finding a mixing bowl so much more fun.

And he sure does say some funny zingers.  He has the best sense of humor.  And no filter helps, too.  We are always laughing around here.

I know that hankering to leave Holland will come up again....who knows if TJ will ever drive a car?  Or go to college?  But you know what?  We never thought he'd be able to stay alone with his brother while we went out to dinner, either.  And he did.

So I guess, for now, as long as we accept that we will never leave Holland, we really ought to be OK.

It's a good thing I love tulips!







Wednesday, August 6, 2014

Embracing Autism

Embracing autism is....

accepting my 14 year old spending the day in his undies because it's a pick-your-battles day.

using the phrases "quiet hands, please", "eyes here please", "stop grabbing your pants please" (and it's not his pants that he's grabbing), "get South Park out of your head" (he's not allowed to watch South Park but clearly he has...many, many times) a quadrillion times a day.

calling my neighborhood friends to spy on my kid walking around "the loop" so I know he hasn't strayed from his normal route.

finding him on, or under, the dog bed.

finding him on, or under, the dog.

hearing Friends episodes recited, correctly, word for word, but only the episodes with the monkey in it.

asking for a hug and settling for a no-armed lean in.

watching him pretend to be a sea turtle dragging himself onto a beach at the town pool with a smile, and not caring if other people are looking at him funny.

mistaking his sea turtle theatre at the town pool for a beached whale, as he explains "if I was a whale I would be on my side, Mom!  Duh!"

apologizing to people he bumps in to, explaining "body awareness is not his strong suit."

getting my toes stepped on.

only using quick dry nail polish, as my toes are always getting stepped on.

having our own human sea life encyclopedia to answer any sea life question.

and finally....embracing autism is the sheer joy when TJ's genuine smile radiates.  And it makes his brother Peter smile.  And it makes his Dad Sean smile.  

And it makes me smile.

Friday, August 1, 2014

'Normal' is a Bad Word

Yesterday Peter was bossing the hell out of TJ.  Lately, when TJ blows up, he runs out of the house and threatens to take off.  Now not to sound selfish, but I had a lunch planned with a friend I hadn't seen in a while, and I didn't want to cancel it.  Judge if you want, but I haven't gotten out in a long time and I needed it.  

And btw, if you ARE judging, this probably isn't the blog for you.  You can go now.

Anyway, I interfered before things got so heated that TJ blew up.  I used my best Snow White calm voice to ask Peter to please not tell TJ what to do.  

This is when he said, "Mom, I helping him to be normal.  Is that ok with you?!"

Snow White promptly left the building.

I took Pete to a different room (yes, he said this in front of TJ) and asked him if he remembered last week, when a 20 year old asshole made fun of TJ playing mini golf.  I did not say asshole to Pete, just using it for you guys because well, he was an asshole.  Anyway, Pete said he remembered.  And it made him really mad.  I told Pete that he just did the same thing by saying TJ isn't normal in front of him.

He got it.

Anyway, long story short, Pete felt bad, apologized to TJ, who hugged his little brother, and I got to go to my lunch.  All's well that ends well.

Except that now that kids TJ's age are going into high school, the difference between them and TJ is more noticeable than ever.  And Pete is often the overlooked one when it comes to our daily struggles, as most of our efforts go towards building TJ's self esteem.

There is no permanent solution.  We deal with our struggles one day at a time, with both boys.  Some days I'm spot on.  Some days I suck.

Most days I'm fabulous.

But in the end, as long as both boys know how loved and cherished they are, I'm doing ok.  Right?  

And as long as they keep talking out the good and the bad, well, I can't ask for much more.

And just out of guilt, I let them have extra iPad time.  Just a little.

:)


Tuesday, July 22, 2014

It's the Little Things

You never know what you don't know.

Does that make sense?

What I mean is, I have no idea what I have to work on with TJ until I start working on something else.

Summer is very hard.  I can't just send TJ to camp.  He is a home body.  Well, truth be told, he is one of the laziest kiddos I know (he gets it from me).  All he wants to do is stay at home and play on his iPad.  If you know anything about autism, you know that this is a bad thing to let him do all day, every day.  So it's my job to shake things up for him and get him moving.  I'm no autism specialist, but I am a TJ specialist.  So while I can't direct him in academics, I can direct him in simple everyday life lessons.

Like walking down a sidewalk with someone.

That sounds like nothing, right?  Well, in my simple desire of just wanting him to get out of the house and move, I have unearthed more things that come so easily to other people, but are difficult for TJ.

Things like sharing sidewalk space.  He walks right down the middle, as if he's alone.  I've had to remind him that we are supposed to be walking together, and to make room next to him for me.  

Then, there's pace.  He has long giraffe legs so he walks faster than I do.  I've reminded him repeatedly to slow down and match pace with the person he's with.  

He keeps forgetting both.  I've gotten stepped on quite a bit.  He's got big feet.

Then there is conversation.  Waiting for responses.  Listening to the other person.  Asking about their interests.  Listening to the other person.  Listening to the other person.

It's challenging.  And surprising.  Surprising that he didn't already know these things.  But these are the small, simple things that create connections with others.  And for a kid about to start high school, these are so, so important.

So there you go.  I never knew what I didn't know.  

I wonder what else I don't know?....

Monday, July 14, 2014

I want you to be a girl

"Mom, did dad feed my fish?
"TJ I don't know.  He's walking the dog; you're going to have to wait until he's home and ask him."
"Argh.  Ok."

About 10 minutes later....

"Mom do you know if dad fed my fish?"
"TJ please wait until dad is home so you can ask him yourself, ok?"
"Ok."

And 5 minutes after that....

"Mom did dad feed my fish or not?!"
"TJ do you remember what I answered a few minutes ago?"
"That I have to wait until he's back from his walk and ask him myself."
"That's right."
"Ok."

Peter:
"God that's so annoying TJ!  Mom said you have to wait!  Didn't you listen?!"

I quietly asked Peter to come into my room.

"Pete, some things we just have to accept and be patient about with TJ."

"I know but it's so annoying!  And he learns stuff all the time, maybe he can change.  I'm sick of it."

"Well what if I said I'm sick of your hair and I wish it were black?"

"Anyone can change their hair color."

"Ok then, Pete, I wish you were a girl.  How about that?"

Silence.

"Pete honey, I absolutely do not wish you were a girl.  But what if I did?  You can't just change the nature of who you are, can you?"

"No..."

"Well neither can TJ, sweetie.  Some things we just have to be patient with, no matter how annoying."

"Ugh.  I get it mom."

It's going to be interesting to see, as Peter gets older, how he deals with his developing understanding of autism and the role it plays in his life.  It's going to be bumpy, just like anything a kid needs to learn about.  But I also know that when push comes to shove, no one has TJ's back like his brother.

We will see.  

And if he's annoyed by this, what's he going to do when Sean and I tease him in front of his future girlfriends?!?!