My Name Is Not Autism

Summer Blog

2013-06-09T12:29:00.000-05:00

By Sean Lehning:

Summer is finally here. I look forward to playing retro video games with my dad (my favorite is Dig-Dug, because I am not good at the other games, especially Robotron, as I am not coordinated enough for its “shoot in all directions with one joystick and move in all directions with the other” setup).

I look back on a very rough freshman year. First I had a hard web design class (which I could not handle at all), but it was switched to an art class. Then the last part of the year was hard as the math class I was in moved into more advanced subjects (the class also doesn’t have a textbook). I also had all AP and honors classes, which was difficult.

Socially, it was pretty easy (although I can’t have a girlfriend, because if I do all the other girls that know me will be sad that they weren’t chosen), but I had to say goodbye to a very special friend.

I have only 4 merit badges and an eagle project to get Eagle rank. We are using the lessons learned from freshman year to make for a better sophomore year.

But I remember the past I have left behind. I know most of you have less functioning children, but I was low functioning when I was born. I would never sleep at night, and I would have screaming tantrums and have to be restrained by my parents. I would freak out over little things (years ago, I saw a bug on a swing set and never went outside that summer). I was not functioning at all.

But I improved, and I hope you can too.

Twelve Angry Men? No, Just Me

2013-03-28T00:43:00.000-05:00

Hey everyone…

I know it’s been a long time. Forever it seems.

I’m still around. Still living life. Sean is still Sean.

But something about me has changed….

I’ve been published a few times in a parent magazine and I had a chance to submit another article for consideration earlier this month.

I completely blew the deadline.

I failed. I utterly and fantastically…failed.

I tried. Oh gosh how I tried.

After I wrote each piece I would ask my husband to look it over.

“Tell me, honey…does it have the magic?”

But they never did.

“Too negative.” he’d say.

I know. They were. Even when I tried to put a good spin on them they still came out as if every morning I got out of the bed on the wrong side.

“But honey, I didn’t say I flew across the table and smacked her upside her head. I only thought that….”

That particular line was in reference to a piece I wrote about a special education teacher adamantly proclaiming that Sean was “wrong” for not looking at people’s faces.

Wrong?

Seriously???

I really did at that moment want to smack her upside her head and it took everything in me to take some breaths and try to turn into a teaching moment.

There…. that was the positive spin I was looking for!

No… not according to my husband. The piece was still too dark.

And it was. They all were.

Finally I came to realize that I…this joking, laughing, smiling person…had become angry.

I am one angry chick. I can smile and laugh through anything. But beneath it all, it’s just one big fake out.

Internally – and externally – it seems as if I am fighting the world.

And it’s just not autism that I’m angry with or fighting against. Sure, it ticks me off that you have the same issues all the time or that you’re dealing with truly ignorant, intolerant people…but that’s just Life.

It’s everything else.

It’s the mandatory rehearsals/Life be damned for my daughter’s chorus class… the calendar that fills up as quickly as you turn the page…the temp job that has gone on too long and sucks the life out of you…. the hip injury that just won’t heal.

It’s the no longer being able to look up and make a wish upon a star and naively believe it will come true.

It’s everything…. absolutely everything.

And it sucks.

I wonder if this is merely a phase like Sean lining up all his Matchbox cars in a row or turning in circles or is it a product of turning 45, cutting off my long hair and wondering what’s left in Life?

What is it that has changed me so drastically?

And if it is just a phase, then how long will it last?

How long before the anger subsides?

How long before the smile is genuine?

And how long, my friend, before I can write again?

Stranger Danger

2013-02-13T14:14:00.000-06:00

Let’s talk about something that scares the heebie-jeebies out of me….someone mistaking something that my son….or any other disabled person…. has done or said as perverted, mentally ill or just plain wrong.

I remember an incident at a pool. A man was obviously (to me) somehow challenged. And please, don’t take any of my failed attempts to be politically correct as somehow disrespectful….

So this guy was staring and then later talking about getting his hair cut.

The problem being that there were young girls at the pool and a mom complained.

He was escorted out and asked not to return.

My son stares at times. He can say things that have nothing to do with current or conventional conversation.

He will talk with anyone….even if he is completely unaware that they are not interested in sharing words with him.

Should he be escorted out?

Will he be asked to leave one day?

What if we’re on an airplane and suddenly he has pain in his ears and since he can’t handle things like that, he has a meltdown?

Will the plane be diverted? Will he be somehow secured in his seat?

What about on the bus?

When he has a confrontation or a meltdown…. will the bus driver pull over or change his route to get Sean home sooner? Or will he call the police and have my son taken away?

Will those police… not knowing who he is or what his diagnosis is… taser him if he doesn’t follow directions?

These scenarios scare the crap out of me.

I’m a helicopter mom not because I’m afraid of what Sean will do. Rather, I’m afraid of what the public will do if he gets overwhelmed or has an incident.

Isn’t that awful? Absolutely awful?

I wish this world would understand our kids. But they don’t… or at least not every single one of the 6 billion on earth does.

And then our kids grow up to be adults…taller than us…stronger than us.

What was a cute little kid talking to a stranger is now the creepy guy at the local pool.

What are we supposed to do?

Do I ban Sean from ever talking to a stranger again? How does that help his social skills?

He loves talking with – mostly at – strangers. He loves sharing his ideas…his opinions…his stories.

How do I teach him the art of conversation?

How do I teach him all those grown-up social skills that are so difficult for even typical adults to learn?

There are those adults and kids who “get” Sean and find him fascinating. Sean is extremely intelligent. He has views that most adults would find insightful and perhaps even entertaining.

But it’s that stranger…today…tomorrow… 50 years in the future… who scares me.

We teach our children all about Stranger Danger. We teach them not to talk to people they don’t know.

And in answer to that instruction, Sean will come back with a dozen reasons why he should talk to strangers.

How else is he to meet people? How else is he supposed to get to know them?

How else is he to make friends?

And that’s what he wants to do most…make friends.

As his mom it kills me to tell him not to talk to people because amongst all who won’t understand him there might be that gem in the crowd.

There might be that one….that best friend who Sean so desperately wants to find.

Thus tonight we will talk. We will try to teach. I’m sure there will be tears.

And my heart will break because I know part of him won’t understand.

Wouldn’t it be easier if the world could simply understand instead?

Not Just Barney Loves My Kid

2013-01-29T20:23:00.000-06:00

I argued one day with Sean about loving him…

Yep, another moment to put down on my “Mom of the Year” application.

“So, Mom…Do you love me?”

One simple question and I just snapped.

But it’s so much more than that. Sean got into a groove where he asked me day after day all day long. I couldn’t pass him in the hallway without him blocking my path and asking me.

“So, Mom…Do you love me?”

I would always sigh and say, “Yes, Sean. Of course I love you.”

But then he’d ask me 5 minutes later…. or an hour… or a day.

It got so frustrating and I know I should be more understanding.

I know it’s just his autism giving him another quirk…another habit that he’ll have for awhile before he moves on to the next.

But it went on for months and eventually wore me down.

Will it ever end? Will it ever stop?

Finally, after getting asked one more time on the way to my bedroom with a load of laundry, I had had enough.

I shouted. I screamed. I’m sure a few extra awful words were thrown in there as well.

“Of course I love you. I wouldn’t have gone through fertility treatments, 25 hours of labor, and an emergency c-section if I didn’t love you!”

Probably not exactly what he wanted to hear but then again, I have yet to fill the blank space on the mantle with my “Mom of the Year” award.

I tried the other route and reminded him that I tell him that I love him all the freaking time…

And that I wouldn’t be there to help him every step of the way, with every difficulty, every meltdown, and celebrate his every accomplishment if I didn’t love him.

Then it dawned on me…

Maybe he doesn’t know that I love him. Maybe he wonders.

Does he really not know?

Is it possible his autism has stolen that feeling of security and love that a child feels from his parent?

Dang.

How am I going to handle that?

Hopefully, it isn’t that….

Please tell me it’s not…

Sean promised to stop asking and for the most part he’s been good about it.

Instead, now he says, “You love me and I love you.”

I picture Barney the over-sized purple dinosaur in my living room.

Maybe Sean’s reassuring himself…or me…

Maybe it’s a mantra that comforts him.

Either way, it’s OK with me.

I probably shouldn’t have taken it so personally when he asked me before.

I should have been more understanding…more patient…more everything.

But the one thing that I am absolutely positively sure of is this…

I love my kid with everything I have…

And if I had more then I would love more…

But then I’d ask for more…

More patience, more understanding…

But most of all, more love.

More love to give to my son…

More love to give to all those kids out there who could use a little more in their lives.

So go ahead and ask me, Sean.

I will reassure you. I will hug you and hold you.

I will be there for every moment.

And I will love you… with everything I have…

And with everything I wish I had.

The Road Behind

2012-12-30T13:30:00.001-06:00

Almost the last day of the year and while I’m not one to look back, it might do me some good today.

It’s funny how I’ve always given that advice to friends but rarely take it myself. I tell them – when they are facing an uphill battle, an unending stack of “to-do’s” – to look at all they have accomplished instead of the long road ahead of them.

So I will do that today…

Sean is constantly talking about what an amazing year he has had. And it has been. It really has.

He graduated from 8^th grade… started high school. He’s navigating the halls by himself. He’s doing well in his classes.

Sean even went up a rank in Boy Scouts. He’s now at Life…just one step from Eagle.

Who would’ve thought?

I wrote in an article earlier this year that I never mourned the loss of Sean’s potential when he was diagnosed. I went into it with the attitude of “Let’s see what he can do and go from there.”

And look how far he’s come….

Unbelievable.

A scene from a zillion years ago keeps flashing through my mind though. It’s so real it’s as if I’m walking those steps now.

Sean was in second grade and still at our local school. I would pull up in front, park my car and walk Sean and Carissa over the paved playground lot and send them in through the front doors.

The feeling that I was feeding my son to the sharks always left me unsettled on those days.

What was going to happen? Because surely something would…

When was the meltdown going to occur? When was the outburst, the desperate attempt to escape school going to make a good day into a bad day? How bad was the bad day going to get?

It was always going to be something.

And I hated those mornings. The joy of walking my kids to school became a test of sanity that I wasn’t sure I could take.

Was I doing the right thing by handing him over every morning? Clearly, he did not belong in the school but where did he belong? Who could help him?

And then 3:30 would come around and I would wait at the back doors. They always let Sean out a few minutes early because he would run out and they felt he was a danger to the other kids.

Seriously…

I remember one of my girlfriends standing with me and saying something about the look on my face.

It was always stressed…always anticipating bad news.

With one look from the teacher or the school psychologist or the social worker through the window on the door, I knew I had to steel myself for what was to come.

What happened now?

Did he kick someone? Bite someone? Who did he push trying to get away from whatever it was that was so terrifying to my child?

What did they do to him now?

While years have passed and our lives have been filled with more steps forward than backward, those moments and feelings remain fresh in our minds.

Will they ever fade?

To hear Sean talk about his early years…about those times… you hear the pain in his voice and know that he is re-living every emotion…as vivid and painful as they were at that second in time.

It’s difficult to listen to, let alone walk those steps with him.

But then the channel in his head switches and Sean talks about how great 2012 was.

Yes, Sean. Yes, it was.

You graduated from 8^th grade and we couldn’t have been prouder.

You started high school.

We’ve had our bumps and bruises. We’ve had our calls to the crisis team as you escape to the bathroom to have your meltdown.

We’ve had our moments of wondering what to do next or if what we are doing is right or wrong.

But you’ve done good Sean.

You have persevered and worked so hard.

You’ve lost your pencil case twice – in the same day – and yet somehow got through to the dismissal bell.

You’ve survived bullying and the madness in the hallways.

And you’ve come home with a coat we’re not sure is yours…oh, and a pair of socks.

But you’ve done good Sean.

You have everything to be proud of as you look back at the year.

And so do we….

While the road ahead will always look far scarier than it actually is, the road we have conquered, that hard, bumpy, sometimes impossible road, is behind us.

We can always remember that road. We will remember that road.

But look how far you’ve come Sean….

Just look how far you’ve come!

Screw Santa

2012-12-24T12:10:00.000-06:00

“I’m nervous.”

I pause in the hallway putting a temporary stop to my quest to get the laundry done and put away before Santa comes. Did I just hear something?

“Mom, I’m nervous.”

Crap.

I did.

“Yes, Sean. What are you nervous about?”

“Tomorrow.”

I’ve had a rough day – my first attempt ever at making no-bake chocolate-covered, peanut butter balls (also known as “Reindeer Balls”) has failed miserably and I can’t even begin to think about my list of things to do.

Thus, I lose it.

“Sean, it’s Christmas *&!#@ Eve! What could you possibly be nervous about?”

I’m expecting him to say something like the noise, the people, the food, leaving the house… anything that would be rational and understandable.

But no….

It’s something entirely different and something I can’t prevent or avoid.

Ah, but I can….

“Then stay home,” I tell Sean.

And I mean it. I really do. How many holidays do you just give in to autism or whatever disability your child has and say screw it, we’re staying home?

As people hustle and bustle about, buying this or that, cooking for hours on end, and traveling to far away destinations…

How many of us are staying home?

We can’t buy the latest in technology because all of our extra money goes towards therapies that aren’t covered by insurance.

We don’t travel because it’s difficult enough some days to make it to school let alone over the river and through the woods to Grandma’s house.

We cook but keep to the menu that makes sense to our kids and their texture issues

And we certainly don’t hustle and bustle about…not when there is a strict schedule to keep at home.

No… holidays with a disabled child are different.

They are simple.

Basic.

Sometimes they are little more than a date on a calendar.

Frozen pizza for Thanksgiving?

Done that.

And tomorrow’s menu for Christmas Day?

We’re having pancakes.

No turkey. No plate after plate of Christmas desserts (Sean doesn’t eat much sugar).

No long car rides. No airplanes.

No nothing….

Just another day…or as close to it as possible.

Sean will awaken at his usual early hour and dive into his Multi-Grain Cheerios, sans spoon. He will pay more attention to his computer games than the presents waiting beneath the tree.

His sisters will eventually stir and our Christmas ritual will begin.

Presents will be opened. Some will be tossed aside, the excitement from when they were initially put on “the list” to now having seriously waned. Others will be installed, plugged in, or played with right away.

It should all last about 15 minutes…maybe 20.

And then it’s back to life. Back to normal.

Sometime during the day we’ll stop by Grandma’s with Christmas wishes and to collect more loot.

But then it’s home. Maybe we’ll get a movie from Red Box and watch it. Maybe we’ll take the dog for a walk.

Maybe we’ll light a fire in the fireplace.

A whole Santa’s bag full of maybe’s but all carefully planned and carried out with the sole goal of getting through the day in mind.

Keep it simple. Keep it quiet.

Keep it normal.

And as we sit down for our breakfast-as-dinner pancakes and look back upon our day, we will know in our hearts that Christmas is not about fancy food or unwrapping the latest gadget.

It’s about family.

So from my family to yours… we wish you a day full of routine and lacking in meltdowns….

A day full of gratefulness for the blessings in our lives…

And a day to be together – if not hand in hand then heart to heart.

Merry Christmas.

Where There's Mess There's Memories

2012-12-20T13:20:00.000-06:00

Sticky fingers.

They have been everywhere in my house. They have touched every surface, every light switch, every handle.

And I know who the culprit is…

Yep.

Sean.

While he has no problem eating his dry cereal with his fingers or picking up his meat or anything else that usually requires a utensil, he does, however, have an aversion to placing his hands under the faucet for a quick rinse.

Mind you… I didn’t say, “wash” because that would involve soap.

No… I’m just asking for a lightning fast run through a stream of H20 and wiping them off somewhere other than his pants or shirt.

Am I asking too much?

Is this merely a “boy” thing that I am not privy to because I lack the genitalia and really has nothing to do with autism?

I wonder….

In the meantime though I am hounding him at least a few times a day to go wash his hands.

And, as always, futile though it may be, I yell “with soap!”

If he knew how to roll his eyes he would. Instead I get the sigh and the hanging head. I can hear his brain asking, “What did I do now?” as if washing his hands was a punishment.

I’ve been a mother of an autistic child for almost 15 years and I am still amazed at how difficult the smallest things can be.

I have to admit though that something might be clicking in his head with regards to the stickiness of his fingers.

Oh gosh no… not like he would ever wash his hands voluntarily!

But the other day I caught him wiping down the light switch in his room. Did he make the connection on why his light switch was so dirty? Probably not. But where there is one baby step there just might be another.

Who knows? If this cleaning thing catches on he might start wiping down more surfaces…

Like the mirrors.

Oh, correct that. Technically, he does wipe the mirrors after he splatters them with toothpaste or water but he uses his hands.

They leave the mirrors absolutely lovely.

Yes…lovely.

Now I know how custodians at department stores feel.

Seriously??? I just cleaned that!

Every time I reach for the pantry handle and my mind screams a quiet “Yuck!” I think back to the days when the kids were younger.

They were sticky and messy and into something all the time.

Gosh I loved those times. I miss them.

Maybe by leaving his mark everywhere Sean is reminding me of those times, bringing back those memories, making me relive those days when nothing was more beautiful than a freshly scrubbed face or tender as the tiny touch of a freshly cleaned hand.

Yep… that’s my boy….making me smile yet again.

Or it could be autism.

Or his DNA.

I don’t know. I’m confused.

Let me think about that while I clean.

Now can someone hand me the soap?

Can You Hear What I Hear?

2012-12-02T12:06:00.000-06:00

Sean is stressed.

It’s 10:30 in the morning on a Sunday and Sean is stressed.

What about?

Who knows?

So many tears lately. So many heavy sighs.

It breaks your heart and frustrates the crap out of you at the same time.

For goodness sake, what is it now?

School? Homework? Bullies? A new video game? Daylight Savings Time?

Oh hell…. Tell me.

And… can it be important?

Yes, I know everything is important. Everything is an issue. Everything is a crisis when it comes to your kid having autism.

And it sucks. Sometimes it really, really sucks.

But then again, every kid has issues – especially when they are 14 and a freshman in high school.

Only with ours, everything is magnified and it becomes an email to a teacher, a phone call to a principal, or merely hours spent dealing with it.

And deal we do…

Every day.

Day after day after day.

My husband and I have this understanding. It’s almost like a Good Cop, Bad Cop thing. If I’m crabby and at end of my frustration level with Sean then he has to step in and takeover.

We can’t be crabby at the same time. We can’t both be having bad days.

I guess maybe that’s good in a sense…

But back to the issues…

Our high school… for some unknown reason…blares music during the passing periods in between classes.

Yep…. loud… very loud….music.

I’ve been there at some of these times and it’s an assault on my senses. I can only imagine what it does to Sean.

Rumor has it that they do it so the kids will go from classroom to classroom quicker and not linger in the hallways. The music stops one minute before their next class starts. It’s a sign that they need to hustle.

Well, the kids do that but they also talk in the hallway.

Oh, wait… correct that… they SHOUT in the hallway because simply talking is out of the question with blaring crap coming out of every speaker in sight.

Sean has been complaining about his ears hurting. I thought it was because he tends to slap at his ears when he’s nervous (and he’s nervous a lot nowadays).

But then one day he was crying. And the issue of his ears became an even bigger issue.

We’re hoping to find the right person to contact to get the music toned down or turned off. I went to the same high school years ago and we only had a warning bell that sounded with one minute left to get to class.

Nothing else.

Why can’t the kids of today enjoy the same controlled chaos that we had years ago without the threat of being deafened?

But the high school is a big place….

And I’m really sick and tired of teachers and administrators pulling the “Well, I’ve/we’ve been doing this for years (and know better)” crap.

Seriously, give me ONE good reason for the music…. ONE!

It’s not Mozart or anything classical, which supposedly helps the brain. It’s not anything but loud.

And now it’s an issue.

Sean is currently wearing earplugs when he's in the hallway. You know... those industrial noise reduction ones? They are on a string so kids think they are ear buds and that he's listening to music. We recently bought him a box of 100 pairs.

Maybe the music is an issue for other kids as well and they either haven’t told their parents or their parents are thinking someone else will complain for them.

I guess that “someone” is me.

I’m beginning to feel like the Angry Bitch all the time.

Why is it my fight?

Why do I have to call people out when they wrong a child? Why do I have to be the one that contacts the school board or the administrators?

Why do I have to do it all the freakin’ time?

Why can’t I just sit back and let someone else do it?

I have to do it because he’s my kid. Because he’s Sean. Because he has autism.

And many times, what is best for him might also be best for other kids.

So stop the music. Stop over stimulating these kids in an already stimulated environment. Let the kids talk and laugh and enjoy their few minutes in the hallway.

And let me enjoy my few minutes…. just a few… when I don’t have to deal with everyone else’s issues.

Because you all know I have enough issues of my own to deal with!

Phone Home

2012-11-05T13:14:00.000-06:00

Sean is better than E.T…. the Extra-Terrestrial made famous by Steven Spielberg’s movie back in the early 80’s.

Yep… Sean calls home.

A lot.

Not that I mind. I don’t mind a bit.

I don’t mind that I carry my cellphone with me everywhere…the bathroom, the shower, when I run out to retrieve the garbage cans from the curb.

I don’t even mind when he phones me while I’m taking a big exam at school. I always make sure that the test proctor knows that if my phone alerts me then I need to take the call.

And it’s happened. I’ll be in the middle of taking my test and my phone silently vibrates on my desk. I look at it… see that it’s Sean… and walk out of the room.

He calls me all the time in between changing classes but most especially after 1^st period.

It’s a class that is way too stimulating for him. It’s face-paced and verbal-instruction based. Those are two of the most difficult things for Sean to deal with.

By the time he’s finished in there he’s simply spent. He’s overloaded. Overwhelmed. He’s had enough.

And so he calls me.

“Hi Mom.”

I know from the sound of his voice how he’s doing. I know the sighs, the breaths, the pauses.

Passing periods between classes last only a few minutes. Therefore, I only have 60 seconds or so to assess what my son needs from me and get him back on track.

It’s like speed dating…or speed therapy… with Dr. Phil.

“You’re OK Sean. Class is over. It’s going to be OK.”

“Mom….”

I try to re-direct him as soon as I can.

“Put it behind you. It’s over. What’s your next class? Go to your next class. You’re going to have a good day….”

Usually he’ll say, “Math. OK. Bye. Love you.”

And then we’re done.

He goes on with his day and I go on with mine. But I can never shake that feeling from that first phone call every morning. I worry. Is he really going to be able to decompress and carry on?

The length of time before the next phone call comes determines the answers to those questions.

If it’s right after the next class then I know it’s going to be a really rough day for him and that first phone call will turn into 4 or 5 or 6 phone calls to get him through until dismissal time.

I center Sean. I calm him.

I’m his lifeline.

And if I have to carry my cellphone every single minute for the rest of my life then I will.

Not because I have to….

But because I’m his mom.

And while I’m taking college courses again to find a career…a job… I oftentimes find myself wondering.

As I walked out of my exam today and through the parking lot, I thought, “Why am I doing this? I already have a job.”

I’m a mom of a disabled child and that means more than anything else in the world. No job title, no promotion, no paycheck could be more important.

Exams, grocery shopping, even snuggling with my husband on his day off can wait…

I need to take a call.

Controlling the Control Freak

2012-10-23T14:08:00.003-05:00

I did something the other day that was completely against my control freak nature. It was against every fiber of my DNA… against every cell of my being.

I walked away and let someone else handle Sean.

I know!!!!

Unbelievable!

Believe me, it wasn’t easy at all.

My stomach still has that sick feeling in the pit of it from that day.

But everything’s ok and that’s the important thing.

Sean was having a horrible day at high school. He called me after 1^st period and told me about how hard his class was. He was down… felt he couldn’t do anything without asking someone for help.

I told him to shake it off…it’s Friday….the class is over…go on and have a good rest of the day.

I thought that was it.

And then he called again an hour or so later.

He was trying to hold himself together. Finally he got to a bathroom and started sobbing.

Math had done him in. He had a test and he felt like he couldn’t do the problems. He had no idea what they were about.

It was gut wrenching to listen to. Absolutely gut wrenching.

Sean needed to pee. That’s his “go-to” thing when he’s overwhelmed.

He needs to pee….

I had visions of the cell phone falling into the toilet so I instructed him to hang up with me, go pee, and then to head down to Student Services where I knew he could talk to someone.

Student Services and the nurse’s office were supposed to be Sean’s “safe zone.”

I told him to call me back as soon as he was done pee’ing.

He hung up.

And then silence.

I called down to Student Services to tell them to expect Sean.

But Sean never arrived and he never called.

I was freaking out. Why didn’t I stay on the phone with him? Where was he?

I had my sobbing son on the phone with me while he was in the bathroom and I told him to hang up on me.

What was I thinking???

I called down to Student Services in between trying to get through on Sean’s cell phone.

They hadn’t seen him yet. Did I know which bathroom he was in?

No.

Why didn’t I ask him?

The minutes ticked by while the school had security do a bathroom sweep.

They finally found him… in class. Meltdown or not, Sean was still worried about missing his next period.

Nothing like sticking to a routine, huh?

The staff brought him out and down to Student Services where a bunch of people spoke with him about everything that was going on…his classes, the bullying, his life.

They called in the Cavalry and I was thrilled. Oh, not because Sean had a meltdown. Rather, so Sean could see that there’s a whole team there to help him when he needs it. I hope he knows that now.

You’re probably wondering where the control freak in me is in this story, aren’t you?

While this was all going on, I called Rich at work.

“Sean’s missing. He’s upset. What should I do?”

Rich said I should go to school…see what I could do.

I grabbed my cell phone and ran out the door. I arrived at the high school in just a few minutes.

I pulled into the parking lot…maneuvered into a space….

And sat there.

I wanted to go in. I wanted to find him myself and hug him tight and tell him that everything was going to be ok.

But I sat there instead.

Then I backed my car up…pulled out into the high school driveway…and drove away.

It killed me inside.

What if I was doing the wrong thing? What if they didn’t know how to handle him?

Sean’s only been there a couple of months. How would they know what to say or do to calm him?

Do I turn back?

I drove home and waited. They said they would call after they got done talking with him.

So I waited.

And then waited some more.

Every minute was like torture.

I didn’t know what was going on and for anyone who knows me, knows that that kills me.

Kills me…

After a couple of hours I finally gave in to my instincts and called the school. Sean was fine and back in class. His schedule was going to be altered and some more help put into place.

Everything was ok…or going to be.

And aside from a few phone calls, I didn’t have to do a thing. Other people handled it and they did just fine.

Imagine that?

Don’t get me wrong… I’m not about to give up my title of Ultimate Control Freak.

But maybe next time I won’t beat myself up in the car so much about not being there.

Then again, maybe next time I’ll just run into the damn school!

Another 'A' Word

2012-10-14T23:21:00.000-05:00

The other night I was talking with another mom. We were discussing the “early” years with Sean.

What a trip down memory lane! Not one that I wanted to take but necessary all the same. Now that he’s 14 years old and mainstreamed it’s important that I don’t forget those times.

Then again, how could I?

It was hard…so, so hard. And it wasn’t just one moment or one day or one year. It was years and years.

Sometimes I still think it’s hard but talking with that mom… today is a cakewalk compared to back then.

When I say it was difficult I’m not necessarily talking about dealing with Sean. Sure, the three-hour long tantrums were daily or more than daily. I remember the scrapes and the bruises…the broken mirror still exists.

I remember how I couldn’t touch him or else he’d swat at me or the hours we’d spend in silence because it was too much for him to hear our voices.

But all of that wasn’t what had me sitting at the kitchen table every day and crying.

No.

It was the schools…the “professionals” who knew better…and all those people who had an opinion and just had to let me know it – especially if it was negative.

How many times have you been told that you needed to be a better parent?

How many?

Is there a parent of an autistic child out there who hasn’t been told that? Is there??

I doubt it.

I went through a hell that was undeserved, unwarranted and almost killed me.

It took a long time to get Sean diagnosed. It wasn’t because I was in denial or anything. Oh, I knew. For a very long time I knew.

It was everybody else I had to convince.

You can ask for evaluations and they “fall through the cracks.”

You can visit psychologists and they will tell you that they can cure your child in 3 or 4 visits…. I just need to discipline Sean more.

Or you hear from friends that if only I had socialized Sean more…taken him to restaurants or hauled him all over the place… that he wouldn’t be like he is.

You can ask for letters to give to the hospital regarding your son’s behaviour and then find out that the person ripped you and your parenting skills apart in them.

And then, of course, are the people who blamed me for using fertility treatments when “God intended me to be infertile.”

It was always my fault.

I had one professional tell me that Sean manipulated me…that I spent too much time with him.

They told me to put him in daycare and get a job.

Nice, huh?

Who they hell are they??? Seriously?

But they get to you. The comments get to you.

You’ve been a bad parent and now look what you’ve done to your child.

They eat away at your soul, your spirit.

And you just want to die.

That’s what kept me at the kitchen table all those days. I’d sit there all day…paralyzed…staring out the patio doors with tears streaming down my face.

And I’d wonder…

Would Sean be better off without me?

I could never leave him. No….

The only way I’d leave my son was to kill myself.

Yes.

You read that right.

You get beaten down by the people around you…family, friends, the “professionals”… and you get to that dark place and you don’t know how to get out of it.

So yes, it got that bad. It was that hard.

And it had nothing to do with Sean’s autism.

It had nothing to do with the meltdowns, the doctors, all the what-ifs of autism and had everything to do with the assholes in life.

That’s what they are…Assholes.

Eventually you realize that.

I realized that.

And they didn’t know better.

I did.

I was Sean’s mom. I didn’t cause his autism. It wasn’t my fault and I wasn’t going to let the world blame me anymore.

And you know what?

I’m a damn good parent.

So screw them.

I eventually stopped crying and got up from my kitchen table. I stopped letting them get to me and I started fighting back.

And I found my voice.

Thank God I found my voice.

So if you get to that point where I was and you feel that “alone” that is so scary to feel, then I’m here to tell you that you’re not.

Our kids may be on opposite ends of the spectrum. Our lives may be vastly different. But the frustration, the anger, and the guilt… it’s all the same.

While some may not admit it… I will.

I’ve been there.

And that’s why I write.

Am I THAT mom? Hell yea!

2012-10-03T11:19:00.002-05:00

The “Big Night” finally arrived…

It was Homecoming for Sean at the high school. Huge event.

I knew this day was coming but agonized over what to do…how it would go down. Dang, I sound like a cop.

Would he go with a date? Would he go with a group like most high school kids do nowadays? Would he go alone?

Would he go at all?

Would he care?

When Sean brought up the idea my husband said, “No.” I’m not sure if “absolutely not” was added but you get the idea.

I don’t think my husband ever went to Homecoming.

But Sean wanted to go.

And I wanted him to change his mind.

He didn’t.

Thus, off I went to school one day to buy his Homecoming ticket. It cost only $15 so if he changed his mind it wouldn’t be that big of a deal.

But he didn’t.

And Rich and I were left wondering what to do. All sorts of things ran through our heads…imagined and real horrors of experiencing high school dances way back in the 80’s when security was lax.

Drinking, smoking, kids making out….

Now it was my turn to say “Absolutely not!”

But I didn’t.

No… instead I volunteered to help out that night.

Yep, you read that right. Helicopter Mom to the rescue! Some of my family chastised me for my altruistic efforts. My friends made fun of me.

“Cut the chord.”

“Let him have a life.”

“Don’t be THAT mom!”

But I am. I am that mom who worries and wonders. I am that mom who wants to be there for their child…needed or not.

And so I was.

I put my best respectable mom clothes on, some semi-sturdy shoes, and volunteered to work at the dance.

OK, give me some credit… I asked to be far away from the action…in the coat checkroom. At least I didn’t volunteer to watch over the dance floor from the balconies!

I could have but I’m sure if I actually witnessed what went on on the dance floor…well, I’m positive this would have been his LAST Homecoming Dance!

Set up in a corner of the cafeteria, I worked a glorious three hours checking in six-inch heels and babysitting cell phones.

Sean came by a couple of times – looking amazingly handsome in his borrowed tie - to tell me how his night was going. Did he dance? Yes. Was it with a girl? Sometimes.

For the most part though he hung out in the lobby. The music was too loud in the gym and it hurt his ears. Next time he wants to wear earplugs.

Next time? Seriously? I have to endure all the what-ifs of tonight all over again?

To quote Sean… “Great”… but put a groan on the end of mine.

As the night came to a close and the tie came off, I asked Sean if he had a good time. He did. He was so excited to experience a major milestone of being a teenager in high school…going to his first Homecoming Dance.

It wasn’t the experience of most of the kids that night. No big groups of dancing sweaty kids. No shouts of “Seniors! Seniors!” from the dance floor. No sneaking off to the back staircase for a quick kiss (at least I hope not!).

He was by himself the majority of the night….pacing at the top of the stairs leading to the gym… alone amongst over a thousand of his classmates.

But he was there and that was the most important thing for him…being there. Oh, and of course, all the girls, too!

And I got to be there as well…safely tucked away…but always at the ready.

I am, after all, THAT mom.

Wanted: Patience

2012-09-10T20:07:00.000-05:00

Someone said I had patience today.

Seriously?

If only they knew…

I can’t stand not getting an email response within 24 hours. I don’t like sitting in traffic. And as far as waiting for my computer to boot? I wonder how many times I’ve been tempted to chuck it out the window.

But this someone and I weren’t talking about traffic or the computer. We were talking about Sean.

And yes, maybe I do have more patience with him.

Maybe.

It certainly was not something I was born with. You can ask my mother. She always said that when they were handing out patience… Maybe I got impatient waiting in line for patience?

Either way, it’s a virtue I definitely lack…except when it comes to Sean.

Oh sure, I have my moments. Take last night for instance. Last night was not one of those nights where you look back and say, “Gosh I’m a great parent!”

No. It was yelling and screaming and utterly failing to understand.

It was frustration.

It was as far from being patient as I could have ever been.

But we all lose it sometimes, don’t we?

My patience was molded over time…over necessity. When your kid is having a total meltdown in the middle of the parking lot or the store or just as you were about to head out the door, you have no choice but to stop and wait. There is little else you can do.

Rushing about…stimulating your child even more…is simply futile.

And thus, you wait. And you speak in calm tones. And you try one thing after another, after another.

And it can take two minutes or two hours…maybe even three.

You just never know.

Patience is not something that is gently given to you but rather shoved into your hands and added to your little bag of tricks to help you cope with your child and his or her ever-changing needs and challenges.

It’s gained at that moment when you learn that fighting against the meltdown (I hate the word “tantrum”), against the texture sensitivities, against the hand-flapping and every thing else is a fight that you can’t win.

It’s learning…

Learning that it takes years before your child may notice someone when they walk into the room.

Years before they can dress themselves…and even then you still have to remind them that the tags – if they still exist – go in the back.

Years working on washing hands, using soap, tying shoes, crossing the street, saying “Hi”…

And then there’s school work…writing, adding, reading…

What about getting on the bus or even recognizing their teachers?

It’s all so much and it all takes time…lots and lots of time.

So if my patience wears a little thin every now and then it’s because I only had so much allotted for that day and it probably got depleted by the time breakfast was over.

Yea, patience…you may think I have it…

And I think I never have enough.

Hold The Mayo, Have The Moment

2012-09-08T22:43:00.001-05:00

All I can say is, “What a day!”

Actually, “What a week!” is more like it.

I went back to school. College…at my age! I’m too old to be a co-ed but I’m giving it…excuse the pun…the old college try!

Thus, the house has been neglected for the week as well as just about everything else in my life. Today was a rare day off from my job and what better way to spend a gorgeous Saturday than with the hubby doing chores around the house.

We accomplished a lot. It was great. But it was also really hard work and I was exhausted before I even began.

And in the midst of all that, Sean got hungry.

After a long week of studying and a very long day of cleaning, organizing and cleaning some more, I just couldn’t muster the strength to make Sean a sandwich.

I know.

Bad mommy!

But seriously, it was a sandwich. Two pieces of bread with two pieces of meat slapped in between them. Smash together and eat.

No problem.

But…

It was.

My exhaustion and the tasks at hand meant that I could have easily let Sean snack his way through lunch by grazing on granola bars or pretzels or anything else his fingers found in the pantry but I really wanted him to have something of substance.

A sandwich.

“Sean, make yourself a sandwich.”

“I don’t know how.”

My first thought was that he was being an obstinate teenager. My second thought was, “Oh crap. He really doesn’t.”

Oh… easy way? Hard way? Easy way? Hard way? My mind argued with itself.

I could blow it off and let it go or I could be the good mom and talk him through it.

I did the right thing, dropped what I was doing, and headed to the kitchen.

“OK, get the bread out of the refrigerator.”

He opened the freezer and looked in.

“In the refrigerator.”

He peered more intensely into the freezer.

“The one on the bottom.”

“Ohhhhh....”

He retrieved the bread and I told him to take two slices out.

Then I instructed him to get the meat out of the drawer in the refrigerator. He chose ham.

Fine.

Sean took one piece and then another, practically throwing the slices on the bread so as to get them out of his hands quicker.

I knew the feel of the meat bothered him. Disgusted him actually.

I decided to not say anything…no need to dwell or remind him of the unpleasantness of the moment.

The sandwich, or rather the unfinished sandwich, laid there on the counter.

Sean didn’t do anything.

“Take the other piece of bread and put it on top.”

He did as he was told.

“Now pick it up and eat it.”

Sean grabbed the sandwich. He looked stressed…distressed...in pain. He casually held the sandwich down by his side, our new puppy Lola eagerly awaiting her chance to pounce.

“Sean, pick up your sandwich and take it to the kitchen table.”

He walked over, sat down, and took a few bites.

Then he was gone.

“Sean!”

“At the table!”

With a huge sigh, Sean returned. You would have thought I was torturing the poor kid with the way he looked.

Geez, it’s just a sandwich.

But it’s not. It never is.

It’s bread that depending upon the day and the brand can be a texture that makes him gag.

And it’s meat or lettuce or anything else that is too slimy, too wet, or too anything for his mind to allow him to touch it, pick it up, chew it, and swallow it.

Let's not even go there with mustard and mayo!

It’s everything.

And today, in the midst of chores and clutter and Life, when I longed to say, “Gosh, I’m tired and in the middle of something, can’t you just make it yourself?” you all know I couldn’t.

It was more than just a sandwich. It was a teaching moment. It was a physically uncomfortable challenge my child had to get through.

It was the look on his face.

It was a million things.

And because of that, Life and exhaustion and everything else had to wait.

My kid needed a sandwich…

And I needed to be with my kid.

Drama Free? Not Me!

2012-08-29T10:32:00.000-05:00

I'm difficult. I admit it. I'm complex. I'm complicated. I'm a witch on a broom one minute and an understanding friend the next.

But at least I’m me and I live Life like I’m grabbing onto a car bumper and “skitching” behind it in the winter… deliriously happy one moment, astonishingly stupid the next, always on the brink of something going wrong and madder than hell when it does.

You can say my life contains drama…and I wouldn’t have it any other way.

Besides, how do you get a drama-free life? How?

People come and go from my life constantly. The other day I posted on my facebook page that I walk through people’s lives and sometimes I stop to chat.

I ran across someone a few weeks ago that said something akin to that they wanted friends who were drama-free.

Well, that would not be me.

I may not gossip about my co-workers. I don’t have drug or alcohol dependencies. I’m not fighting with an ex.

I don’t even care all that much about my weight.

But I do have children and one of them has a disability.

That, by itself, is all the drama my life has room for.

I cry. I scream. I complain.

I write letters and stand up for my son (and sometimes for myself). I find strength where I never thought I had it.

I have little patience for people’s ignorance and basically want to smack them upside their heads and shout, “Listen! You might just learn something.”

I fight.

And when I can’t seem to fight anymore… I feel like I don’t have anything left… I fight some more.

Thus, I’m moody. I’m sensitive. I’m needy. I’m demanding. I need more hugs than a hug convention can give.

And I need friends.

Friends to talk to. Friends to bitch with. Friends who will listen even though they have heard it all before.

I need friends to reach out to after that phone call from school, the email that contained news of another dead end, the mail that brought yet another insurance denial.

I need friends for those quiet times… the times when I am in my head and I am overwhelmed by the tasks that lie ahead of me, the sheer magnitude of details that go into raising an autistic child, or the fear of a future that appears to be approaching all too quickly.

So to those people who want drama-free friends, I’ll say this… I’m just going to keep walking. I’m not going to stop and chat.

I don’t know how you get to be drama-free. Is it from living in a perfectly controlled bubble? Is it from not interacting with people? Is it from not having passion and fire?

Because I have passion and fire….

And while my life can sometimes be really hard and sometimes can really suck, it also can be rewarding and beautiful.

Do you know that Sean put on deodorant the other day without me telling him? How long have we been working on that? Four years? Five?

I practically jumped for joy but I didn’t. I quietly celebrated in my head.

And then I remembered that the mask of drama has two sides… one happy and one sad.

So if you want to have a drama-free life and erase all the bad then you’re also going to have to get rid of all the good.

Sean put on deodorant the other day. Imagine that.

That’s drama. That’s my life. And I’ll take it any day.

You…the person who won’t be my friend…can just watch me walk away.

Oh Hell, You Title It!

2012-08-23T11:09:00.001-05:00

4:30...quarter to 5 is fast approaching.

And some big haired, 80’s era, pseudo-heavy metal band just sang, “It’s the final countdown” in my head.

Crap.

Yep, the final countdown…

High school orientation is just minutes away.

When did all that growing up happen?

How the heck did we get here?

Crap.

The final countdown…

This year is unlike any other year. It is so full of unknowns. It’s so scary. It’s not something I ever dreamed of. Ok, that’s a lie. Maybe I did a bit but that was so long ago.

And now it’s here.

Crap.

I should be happy. I should be ecstatic. I should be absolutely thrilled beyond my wildest dreams that my son is going to high school and being mainstreamed.

But I’m not…

Because it was beyond my wildest dreams. It really was.

I think back to that conference room and that huge wooden, super expensive table my husband and I sat at seven years ago.

The doctors gave us the diagnosis – something that we expected – and thought, “Ok, where do we go from here?”

Sean was diagnosed on a Friday and by Tuesday we were already at a support group meeting.

But I never expected. Sure, the thought would go through my head every now and then but it was always through a fog of “what ifs” and “I wonder if he could…”

But never mainstream….never full-time.

Even after he was fully mainstreamed last year for 8^th grade I didn’t dare think about this day.

Too many obstacles to overcome…too many things to go wrong.

Too much pressure on Sean.

But you know what?

He overcame them all. The obstacles, the missteps, the bullying, the pressure… he beat and excelled past all of them.

Not that I doubted. No, I never did.

But it’s different…not doubting versus daring to dream.

And now it’s here… high school orientation night.

The first part of the night we will be with the other special education parents. Even though he is mainstreamed Sean will still have an IEP and resource time. It will be during that time that I will feel most comfortable. I know the routine.

Then Sean will head off with the other freshmen…for a tour and whatever else incoming freshmen do.

And I will sit in another room… supposedly listening to some administrator talk about the importance of academics and getting involved… blah, blah, blah…and my mind will be elsewhere.

“What is he doing? Is he OK? Is he listening? What’s going through his mind?”

A million thoughts will surge through my brain and the stress will tighten my already tightened jaw.

Oh crap, oh crap, oh crap.

I thought waking up the other day with that damn song going through my head was bad enough. But now it’s here…

The final countdown…

And big haired or not, it’s almost 4:30.

And I’m a wreck.

Two Boys and a Boat

2012-08-16T12:14:00.000-05:00

Sean went on a playdate yesterday.

Yep. You read that right.

A playdate.

Holy freakin’ cow…

It was with a boy whom he had met at Boy Scout camp. Looking back, it should have never happened but it did. Funny how the world goes right sometimes, huh?

Sean was working on his Small Boat Sailing merit badge. His class was the first one of the day…meeting around 8:45.

Sean was also working on his Communications badge, which happened to be his last class of the day.

You would never think that the two would interfere with each other but they did.

And that misstep may have changed Sean’s life…or at least, a few days of it.

Even though Sean was sick, Boy Scout camp proceeded quite normally for the first couple of days. He went to his classes, did his homework and went about his routine.

Then we learned that in order to complete the Communications badge Sean had to attend a meeting hosted by the camp directors.

That meeting would be held first thing in the morning.

Crap.

What to do? What to do?

You would think it’s a relatively easy question to answer but then again, you’re out in the woods…not sleeping well… and everything is NOT normal…or easy!

I decided to speak with the sailing instructor to see about switching to the later class one day so Sean could attend the meeting.

The switch was made for Wednesday. Sean attended his meeting and then went to the 10:30 sailing class…

Where he met his buddy.

Instant bonding. Two peas in a pod. Alike but yet so different.

Sean had made a friend.

I wasn’t planning on keeping the later class time but when the boy said, “Will you be here tomorrow, Sean?” I could hardly have him say “No” when he glanced over to me for the answer.

The schedule, the perfectly controlled environment of “Mama Control Freak” was messed up and I couldn’t care less.

Sean had made a friend.

The following day – Thursday – they spent in boating class and then made plans to meet during open boating hours and take a boat out to sail.

You can imagine the fear coursing through my body with the idea of my son and another little boy out on a boat in the middle of the lake but I let him go.

And off they went…and had a blast.

Friday afternoon Rich and the girls came up to experience camp for themselves. Again, the boys were back at the beach, readying their boat for another afternoon of sailing.

To see them out there… to know that Sean was doing something so “normal”…hanging out with another boy…

The moment was priceless.

We exchanged emails and phone numbers and this time a friendship did not end with the closing bonfire of summer camp.

The two emailed and phoned.

And then it happened… Sean got invited over to the boy’s house.

Not only was if for a playdate but it was the boy’s birthday. The family wanted to know if Sean could accompany them for a dinner celebration.

Wow.

That’s all I could think…

Wow.

And again, off they went.

With Sean and his autism, so much of his world has to be controlled. Every moment, every bite of food, every situation played out beforehand so you can anticipate the challenges that your child will face.

It’s astonishingly easy to become a control freak…Captain of nothing else in the world but your own little dinghy.

But then Life throws you a lifejacket … changes course… and the wind decides to blow in a completely different direction.

And you know what?

Aside from being scary and new and unchartered, it turned out just fine.

Imagine that.

Take Two and Call Me in the Morning

2012-08-10T02:30:00.000-05:00

“I like boobs. I like boobs. I like boobs.”

Not exactly what you expect to hear coming from your 14-year-old son’s mouth in the pediatrician’s office but then again, with Sean the unexpected is the only thing you can expect.

Sean had to get another shot today. Yep, more torture for the privilege of attending the 9^th grade.

Poor kid. You know how he is about shots.

I struggled with how to tell him he was going to have to get another one. I knew about it roughly three weeks ago when the high school rejected his physical.

I was so angry. I couldn’t believe it when the school nurse said he needed a booster shot because… get this… a vaccination Sean received in 1999 was given – supposedly – a couple of days too early.

Are they serious??

I was fuming riding my bicycle home that day from the high school. So much for a relaxing ride on a gorgeous summer day…

So I’ve known for weeks and couldn’t imagine telling him about the extra injection. He had been so relieved after the last set was done.

And now there was one more.

Sometimes being a mom sucks.

I passed off the additional doctor’s appointment as yet another check up for a recurring pain he’s been having.

I wasn’t lying… I was sure to talk to the doctor about it.

But I felt awful for not being entirely truthful. Every time he brought up the appointment I felt as if I was deceiving my child.

And I was.

I came clean about a mile into the drive to the doctor’s office. It was in the car but we were at a red light. He still could have jumped out and made a run for it.

Surprisingly, he took it fairly well. I allowed some foul-mouthed remarks about the district’s stupid rules and regulations and dropped the subject as quickly as I could.

Do you talk about it or ignore it? Touchy situation….

I guess in the length of a red light, we did both.

We got to the doctor’s office and I was grateful for the levity that talking about last week’s explosive diarrhea incident in the woods and the irony of the doctor’s bathrooms being unusable provided.

Soon enough, the doctor was in.

Sean and I had practiced our “hold” (where I – for the lack of a better word – trap his arms under mine while he’s facing me)… adding in talk about smelly armpits and failed deodorant to the mix…before the doctor arrived.

We went over how he would count down from three and then scream…preferably like a girl. The doctor would give him the shot during the scream. It’s a long-standing joke in our house as Sean’s voice has been changing. When he screams it will often times “crack” and take on the high pitch of his sisters’ vocal endeavors.

So the scene was set for the big shot. Sean was standing in front of me. The cap was off of the syringe.

Everyone was ready.

That’s when “routine” and “practice” flew out the door.

As soon as the alcohol swab hit my son’s upper left arm he started semi-shouting “I like boobs. I like boobs. I like boobs.”

It was hilarious. I couldn’t believe the words coming from my son’s mouth.

With the swiftness of a super hero, the doctor shot him in the arm.

Sean paused. Not knowing what to think.

Then she reached for something… Sean, suspecting it was another needle, instantly began his mantra again.

“I like boobs. I like boobs. I like boobs.”

I couldn’t suppress my laugh as the thing she reached for turned out to be a band-aid but yet the boob talk continued.

“I like boobs. I like boobs. I like boobs,” Sean kept saying as the band-aid was placed on his arm.

“Oh, it’s over?”

“Yes. That was a band-aid.”

“It didn’t even hurt.”

I quieted the urge to say, “Yea, putting on a band-aid rarely does.”

Instead I went with something mom-like and told my son how proud I was of him.

Three weeks of torment with visions of him screaming and crying in the doctor’s office swirling in my head. Three weeks of wondering how I was going to hide the tears that would inevitably well up as he anticipated the injection.

So much for all of that…

Who knew that the word “boob” would be all that it took?

Although he did admit that he’s never seen one… but he’s sure he likes them!

My kid never ceases to amaze me….

One Word, Two Worlds

2012-08-04T21:48:00.000-05:00

My son is high functioning. Therefore, I walk a fine line every day…sometimes tipping towards the “typical” world, sometimes towards the “special needs” world.

Which do I prefer?

Special needs.

Absolutely.

Why?

Because they…the people that live with, care for and teach these amazing children and adults…understand.

They understand…

They…understand.

Do you know how comforting it is to be surrounded by people who understand?

All of you know exactly what I’m talking about.

You relax. You breathe. You allow yourself a moment.

Even if it is just a moment…

It is those moments that I was so desperately searching for this past week while I was away at Boy Scout camp with Sean.

Sometimes I found them…most often in the young counselors. I would introduce Sean and tell them he was autistic. Then, as if some silent prayer had been answered, they would say, “Cool. I just volunteered at a special needs camp last week.”

Take a breath. Breathe…

They got it. They understood.

Sean would be safe in their hands and I could have my moment.

Later on I’d return to our campsite with Sean and march off to the dining hall with all the other scouts.

Back to the “typical” world… the scary world…the world of so many unknowns…

When Sean would become overwhelmed by the dozens of scouts around him, all chattering away, controlled chaos reigning around him…

Would they understand how he had to hold tight to me to calm him?

When he would sit there after meal time and wouldn’t move when he was told to clean up because no one had broken down the instructions to their basics…put the plates in the rack, get a bucket, wipe the table…

Would they not think he was lazy and trying to get out of work?

And when he needed to use the bathroom because he was either nervous and seeking a quiet refuge or clearly had a biological need to go…

Would they let him?

The answer is…

No.

They won’t understand. They won’t get it. They won’t let him go.

And when raised voices have quieted…

When tears have dried…

There is no need to feel sorry for me because I do not understand.

I understand so much more than you…

I understand that children do not have to be placed solely in either the special needs world or the typical world.

I understand that my child, like most special needs children, has one of the purest souls and he has the ability… the capability… of being in either world.

And when you encounter him in the “typical” world you should listen and learn…open your heart…

Be grateful that he came for a visit…

And at least try to understand.

That is, after all, all anyone can ask for.

And that is exactly what my child truly deserves.

Understanding.

A Camping We Will Go...Again

2012-07-31T22:01:00.001-05:00

It’s that time of year again…. time for Boy Scout camp.

Ugh.

Let’s start by quoting Sean…

“Mom, are you excited?”

Oh, oh! I know this one (as I picture myself wildly squirming in my desk seat, hand up in the air, desperate to be called upon).

The answer would be….

NO!

And yes, that’s my final answer!

Was it the messy house, the hot weather of this summer or a million other things that kept me from reaching epic excitement mode? Or is it simply that this year was definitely not the year I was looking forward to camp?

Then again, sleeping in a tent for a week, eating camp food and getting eaten alive by unknown beasts of air and land is hardly on my bucket list or even something I want to write about in my “What I Did Over Summer” report.

No… nada… blyuck.

But I love my kid and you all know I’d do anything for him. Thus, it is back to camp I go.

Unlike last year when Sean rode the bus with the rest of the troop and I followed in my car immersed in Barry Manilow heaven, we decided that it was best for Sean to stay back and ride with me.

He wasn’t thrilled with the idea until I explained to him exactly the comforts (or lack there of) of riding in a 15-passenger van with… well… 14 other people.

No dvd player. No room to spread out. No control over the radio station.

Besides, they were leaving an hour earlier.

“Don’t you want to sleep in a bit?”

SOLD!

It really had little to do with my being a helicopter mom. Am I one? Proudly! But this time it was different. Sean has been having major anxiety issues. Whether it is due to high school or the mere thought of high school or whether or not the sun will come up tomorrow (bet your bottom dollar that it will!), the kid is one chest-tightened, heart- fluttering ball of anxiousness.

The last thing he needed was 4 hours in a crowded van with noise and uncertain bathroom and food breaks.

And let’s not forget, one less hour of sleep!

So off to camp we went….

The Sweetest Thing

2012-07-21T20:14:00.000-05:00

Home, sweet home….

Or, as I see it… Laundry…loads and loads of laundry.

It is the morning after coming home from our first family vacation in over 8 years. Most people are shocked that we have not left town in so long. However, parents of special needs kids are not.

They know what it takes.

They know what it’s like.

And they are more shocked that it’s been only 8 years since we’ve last ventured out.

Sean couldn’t wait to get home. I think the pressures of being out of his world were weighing on him and he just had to get back to his computer, his room…his life.

He’s awake now. With water bottle in hand and the computer on, he’s in his element.

Shortly, he will ask what we have to do today.

Our agenda is light with only helping out at a car wash for the Boy Scouts on it. I would skip it but camp is in a week and we need funds to pay for the bus that will transport our troop away from air conditioning and cushioned seats to a land of layer upon layer of bug spray and all around discomfort.

Just the thought of packing again and heading out exhausts my ability to cope. I can only imagine how Sean is going to deal with it.

He did really well though on vacation. We tried to keep it easygoing and not run around too much. We brought food from home and I made sure to have some melatonin on hand to help him sleep.

There were times when he would be too quiet and I would look at him and see that he was somewhere deep in his head. I worried about him most during those moments. Is he enjoying himself? Is he stressed?

I would ask him and he would reply that he was merely thinking.

Oh how I wish I knew about what!

I knew he was worried about our new dog Lola. She was being boarded for the first time and we were all concerned on how she was going to handle it. The doggie hotel had webcams so we were able to see her while we were gone.

She seemed to be doing fine but still he worried.

He worries a lot… which in turn, worries me.

It’s as if the worrying has aged him or something. He’s a 14-year-old kid with an 80-year-old soul. He’s always asking me, “Are you ok?” Or, “Are you happy?”

Shouldn’t he be more worried about what the next thing that he grabs from the pantry will be?

Oh, that’s right. He worries about that as well.

At home I always try to ease his fears by laying things out for him. Every night I tell him what’s going on the following day. Every morning I tell him again. Then throughout the day it’s more of me telling him what’s next.

That’s why vacations are so difficult. You can only plan so much. You can only anticipate so many obstacles.

In other words, who knew Denny’s would be so crowded at 10:30 in the morning or that Ashley would be the one having the meltdown or that, in the midst of a drought of epic and historical proportions, it would rain??

Seriously…it rained!

Walking in the door last night was not only a relief for him but it was for me as well. Home is where I know the things that stress him. Home is where I can help him the most. Home is his refuge, his safe place. But most importantly, home is where Sean is free to be himself.

And that alone makes Home the sweetest place to be.

Eye Wear Short Shorts

2012-06-27T09:45:00.001-05:00

Today was a day that Sean has been looking forward to for a couple of months.

“Mom, are you excited?”

“For what?”

“My eye doctor appointment.”

“Oh, yea… that.”

Honestly, no. I was not excited. I was scared. I was worried. I really didn’t know what to think or feel beyond the fact that my son was having eye pain and blurry vision and I had no idea how to fix it.

I’m a mom. I should know.

But I didn’t. Thus, several weeks ago I phoned my trusted eye doctor and made an appointment. It wasn’t an emergency – yet – so we got what we got and therefore had weeks and weeks ahead of us to think, to imagine, and to worry what this appointment would bring.

Finally, today was the day.

Sean barely had time to get off the bus, come home and pee before we packed a snack bag and left for the medical center.

I prepped him again in the car as I have done so many times before.

“Sean, you’re going to get eye drops.”

“I know.”

But did he really?

Did he remember the horror he went through as a young child when he came down with pink eye?

Did he remember how both my husband and I had to hold him down to put the drops in every day?

Did he remember the terror that he felt with every drop of liquid?

Did he?

I know I did.

And now Sean is way too big for me to hold down – even if my husband was there.

What would I do in the doctor’s office if he freaked out? What would I do if he lashed out – threw his hand up – and accidentally hit a staff member?

What would I do?

“Sean, you’re getting drops.”

“I know.”

The moment of truth was swift. After a short warm-up with the eye chart the technician whipped out the magic bottle… the stuff I feared so much…in order to dilate my son’s pupils.

He seemed calm.

And then he wasn’t.

I had him hold my hands – wishing for him to break them rather than have his arm swipe an unsuspecting employee.

Sean was breathing heavy, his lips frantically going back and forth over his braces.

I had to try and keep him calm. I would worry about him ripping his lips apart later.

He closed his eyes and you could tell that ever fiber in his body felt panic and fear.

My eyes started to tear and my heart broke as I helplessly watched what my son was going through.

I tried talking to him.

“Sean, look at me. You’re ok.”

“Sean, close your eyes. Hold my hand. I’m here.”

And then finally, desperately, I remembered something he had said.

At summer school he had met a girl.

He didn’t know what she looked like or any detail of her person.

Except for one.

She wore short shorts to school.

“Sean, think about that girl today. Think about the short shorts.”

He smiled.

“Sean, tell me again what she was wearing.”

“Yea, short shorts.”

He laughed.

The drops were in and now only the stinging was left to get through.

I wrapped his arms around me to keep him from wiping his eyes and held his head to my chest as he cried, “My eyes! My eyes!”

If only I could take every painful second from him. If only I could hold him tight like that and protect him from all his terrors.

But I can’t. I can only be there.

We had one more hurdle to cross when the doctor’s light was too bright for him.

“Sean, remember the short shorts.”

Even the doctor had to stop what she was doing so she could laugh.

We all did.

And then it was over.

My son, the boy who can’t look at anyone, stares too much and doesn’t blink enough. It was as simple as that.

No glasses. No mom-imagined brain tumor. No emergency.

Blink breaks, an anti-glare screen for the computer and no tears shampoo to wash his gorgeous eyelashes… a prescription that anybody could handle.

A call to Pizza Hut for a celebratory dinner and the details of the day’s ordeal were practically forgotten.

Hopefully, that also included the co-ed in the short shorts!

We Need A Bigger Boat To Hold My Worry

2012-06-03T20:49:00.000-05:00

OK, I’m totally freaking out right now….

A million things going on in my head and in my life and on top of it all is Sean going on his first REAL field trip in six years.

First….

And it involves the city of Chicago…

And a boat.

Ugh.

I so can’t handle this.

After a couple of emails back and forth with the school I’ve secured a “buddy” for him to be with tomorrow. I’m hoping that the kid won’t ditch him or dare him to jump into the lake.

Can you tell my imagination is on overdrive?

It’s THE CITY!!!! And the lake…and a boat.

Holy crap!

Tonight we asked him if he knew his buddy.

Sean said, “Yes.”

“Do you know what he looks like?”

“I know his voice.”

Oh kill me now… how am I not supposed to get in my car tomorrow and follow that bus?

“I think he has dark hair.”

Great.

Thankfully, Sean picked up his yearbook from school on Friday. We grabbed it and looked through the Class of 2012 for any boys with Sean’s buddy’s name.

Only one… how lucky are we?!

Rich covered the names and held up the page for Sean in a pseudo-police-photo-lineup kind of thing.

Sean pointed him out.

Whew… but does that make me any less stressed about tomorrow?

Not a darn bit.

He’s going to be taking a camera and a cellphone with him on the trip. I know he’ll leave the house with them secured in his pockets but will they come home?

Who knows?

I was at school on Friday – talking with a bunch of teachers in the front office. Many of them are going on the trip tomorrow. I made no excuses, was not a tad embarrassed, asking them to keep an eye on him.

They all love Sean and assured me that they would.

But I’m his mom and nobody… NOBODY… can look over my son… be overprotective and overbearing… quite like I can.

Nobody…

But I can’t follow the bus tomorrow. I can’t meet him downtown and hold his hand and guide him from site to site on the tour.

I can’t be two feet behind him on the boat and remind him not to get too close to the railing.

I can’t…. but you know I want to.

Dang.

I have his graduation and party and his sisters and all sorts of Life stuff to think about and worry about….

And now I have to worry about this trip.

This doggone trip…

At least he’ll be back by 4pm…

Hopefully…

Crap!

A Winning Investment

2012-05-23T13:14:00.000-05:00

Sean and I were being nostalgic today – the day after his 14^th birthday. We were driving to music therapy as we’ve done every other Tuesday for the last 7 years.

He’s been obsessed lately about what he was like when he was little. He wanted to know if we thought it was maturation or the therapies that helped get him to this point in his life.

I told him that I honestly thought it was both.

And then I told him how he used to scream and scream and scream some more every time we took him to therapy.

If it was occupational therapy he screamed.

Music therapy… he screamed.

It didn’t matter where he was going or what he was doing… Sean screamed.

I’d sit out in the waiting room silently dying inside wondering if I was doing the right thing for him.

Rich would take him and come home and ask, “Why?”

At the time it seemed like we were throwing money out of our moving car.

But eventually the screaming subsided. He still occasionally will ask when it will be over but even that has become less important these days.

Sean doesn’t see music therapy as therapy. I think he sees it as a time when he can visit with an old friend. Sean and Mr. Craig joke, laugh and “be guys” while I nap in the waiting room.

In between my dreams I listen to how Sean has improved in following a rhythm or striking the drum without the force of a strongman hitting a bell at the carnival.

Sean’s doing his therapy and loving it.

He’s come a long way….

Sean also asked me today what kinds of therapies we’ve had him in over the years.

Wow… let’s see….

Occupational.

Listening.

Music.

“Talk.”

Social Group.

Camps.

Fine and gross motor physical therapy.

But never speech…. The school district and the insurance were both against it. Hopefully the “dis” and “dat” will cease once the braces are off next year.

Can I say what’s worked and what hasn’t? No. I always thought everything had potential. Some worked better simply because they adapted into our lives easier than others.

As for how much we spent? Sean was curious so I gave him an estimate for the last 8 years.

$5,000.

Then I thought…. No…. $10,000.

No….

Let’s see…. $50 for each session of that therapy for 26 weeks, $1400 for 10 sessions of another, $20 every two weeks for that one, $40 each for 20 sessions of the other… plus $140 for headphones, another $140 for a heavy blanket…. Plus gas….

Scary that all that was simply out-of-pocket expenses…

Don’t forget all the “toys” that we bought that were really to combat his autism and physical difficulties. Balance balls and hippity hops to gain core strength so he could sit up in a chair. The mini-trampoline was for sensory needs. The outdoor playset helped him with coordination. The instruments were there so we could play with him and get him used to us making noise.

What about the fidget toys? The countless fidget toys that would be mangled and destroyed almost daily. Even now there’s a bin of them in his room, some in the cubby of his loftbed and in various drawers throughout the house.

They are always at the ready.

$10,000 doesn’t even come close!

Sean was somewhat shocked and stated that it was as expensive as buying a new car.

And then he asked if it was worth it.

Really?

Worth it?

I looked over at him sitting next to me in the car… so strong….actually carrying on a conversation with me… and replied…

“Yes, Sean. It was all worth it.”

Home, Sweet, Ugh Go Take A Shower, Home

2012-04-23T00:33:00.002-05:00

My husband said he hadn’t seen me smile like that in a long time…

Really?

I hardly noticed my facial expression.

The only thing I could think of… the only thing foremost in mind… was seeing my son Sean walk through the door and say, “Hi, Mom.”

And he did…

And I smiled.

Sean just got back from his first Boy Scout camping trip without a parent.

Yep, you read that right. I actually let him go off into the woods and spend almost a full 48 hours without me or my husband.

And no… I was neither high nor drunk when the decision was made.

Sean had been talking about it for a while. I swore it was never going to happen. It wasn’t even in the realm of my deepest imagination. But when my work schedule and Life collided, the thought was born.

Camping…Without us?

No… not in my lifetime.

But it did.

And Sean was thrilled.

Of course upon his arrival back home he looked to be in layers of clothing and was absolutely filthy but a good shower and a change of clothes would fix that.

The bottom layer looked to be the same outfit that he left in on Friday… Hmmm…. Was it the forgetfulness of an autistic child or the typical poor hygiene of a teenage male?

I wonder….

Either way off he went to get clean with a shouted reminder to use soap…lots of it.

Ahhh…. It’s good to have him home.

Once he was showered and changed – and reminded to put on deodorant – Sean shared some of the weekend with us.

Did he sleep well? No.

Did he eat all the stuff we sent along with him in case he couldn’t eat the camp food provided due to texture issues? Yes.

What was the worst part? Mom and Dad not being there to always rub him.

What was the best part? Mom and Dad not being there to constantly watch over him.

Oh stake through my heart my little boy didn’t pine away miserably for me!

I can’t believe he spent the weekend camping without either one of us.

Actually, truthfully, I can.

Sean is an amazing kid. He always has been.

But who would have thought?

I’ve tried to think about it in terms of his first day at the junior high. I wasn’t there to hold his hand or make sure he had the right books for the right class. I wasn’t there to make sure he ate his lunch or to help him navigate the halls. I wasn’t there to remind him to wash his hands.

But he does it all… with the exception, of course, of washing his hands.

Sean has been pushed to see how far he can go and he’s never failed.

He’s tripped and fallen. He’s had a meltdown after a really bad day.

But he’s always demanded to go back and try again…. Even when I didn’t think it was a good idea.

Then again, it really is my own over-protectiveness that at times seems to limit him.

Sean doesn’t see limits. He wants it all. He wants to do everything.

And you know what? After this weekend, I think he will…dirty hands and all.