Just a little something

This morning, Conor came home for a visit with his senior Behavioral Therapist and a new Clinical Assistant, Jack. Sharon, his old Clinical Assistant, went to work at the prison. Guess she figured those kind of inmates are easier.

Oh, c’mon, that’s funny.  Gallows humor.  She really did go to work at the prison, no lie.

Polly and Jack came bearing gifts.

This is a mat, with handles.  On the unit, they carry these around for patients who head bang. You place it under their head so they don't get a concussion, I guess.

This is a pair of arm guards.  You put them on your arms to guard against scratches and bites. They look like little slippers, don't they?

Polly, Conor’s therapist, sent me an email a couple weeks ago with a whole catalog of items we could purchase to protect us from his behaviors.  I ignored it. 

Could.

Not.

Deal. 

If we do not have those items in my house, I will not have to use those items.  Nope, don’t need them. La la la, not listening to you.

So she showed up with the stuff on her own.  Hmmmm, guess we’re not the first parents she’s dealt with, ya think?

Conor’s improved greatly on the unit.  He’s tantrumming less, and he’s slowly learning how to pull himself together when he can’t get what he wants or when you make demands on him.  You know, typical parenting stuff… sweep the floor, fold the laundry, walk on the treadmill, no you can’t download that Lady Gaga video-that-could-be-soft-porn on your iTouch.   That sort of thing.

But he still struggles to maintain control at times.  And I’m struggling to come to grips with that.  This is no quick fix.  It’s going to be a long, hard slog.  I think it’s going to be like trying to walk through thigh-high water. 

You can do it, it’s possible…but it’s just not that easy.

Since I have no choice in the matter, I will pull on a pair of waders and start slogging away.  But the next time Polly brings me a gift, it better be a bottle of wine.

Here I go...

The luck of the Irish

I watched Maureen's dad roll her suitcases out of the lobby on a cart.  I had seen him off and on when he came to town to visit his daughter on the unit. 

I knew he recognized me, even though we had never spoken in all these months.  He seemed aloof on his visits, so I never approached him.  I’m better with other moms anyway.

"Are you taking Maureen home today?" I asked him, wanting to acknowledge this important day.  Her discharge date had been pushed back several times.  "You must be thrilled," I continued.

"Yes, she's been smiling all morning," he replied.

"Good luck," I said, as I turned to go. 

"Good luck to you, too," he replied as I walked away.

Luck, yes, that’s what we both need.  Luck, and a really good behavioral intervention plan.

Friends and Fireworks

I thought they might end with a big bang.  You know, like fireworks or one of those stupid kids toys.

Friendship is a funny thing.  I thought losing friends to autism would mean a big fight, or a lot of hurt feelings, or screaming and yelling or someone telling me they couldn’t handle my son coming over to their house.  Some sort of loud, emotional dénouement that I could obsess over and use to annoy my husband by retelling the story again and again.

After all, I had heard all the horror stories. People inviting your family over to their house, but suggesting that you leave your child with special needs at home. The woman you thought was your friend saying that maybe he’d behave better if you, just, well… here, read this Magic 1-2-3 book, it really helped her little Johnny. And have you considered spanking, she wonders?

I think it’s because my husband and I only started out with 5 friends to begin with. But the two friendships that fizzled since my son’s diagnosis did just that.  Just kind of… went away. No fireworks, no drama.  Not even a sizzle. Sad, really, if you think about it.

Maybe my husband and I are spoiled. After all, I have three sisters, and he has three brothers and a sister, so we have a large pool of built-in friends.  Like a good, solid built-in cabinet. They’re family, they have to put up with us, right? They can’t NOT see us, someone’s having a birthday at least every month.

Maybe it’s only the high maintenance friendships that fizzle.  The ones that require a lot of hard work, and massaging, the friendships that always seem to require something from you other than mutual respect, laughter, alcohol, and chips and dip. (The chips and dip are crucial.  I love guacamole. It’s a healthy fat, right?)

Perhaps it’s because my husband and I have been able to afford respite care for my son, at least before he went cuckoo two years ago. When you can afford to leave your child with autism with someone you trust, you certainly can try to make an effort at being social.  If any of your three remaining friends are free, that is.

Who knows, really, why it happened.  I miss them, once in awhile, those friendships that have simply withered from inattention.  Or, at least the idea of them. But not enough, really, to try to revive them. 

I wonder, though.  Did we give up on them, or did they give up on us?

Fiery, and small

In all the hullabaloo in our home surrounding Conor, his 9 year-old typical brother often gets left in the shadows.  It’s been terribly hard to give Aidan the level of attention he deserves, that any child deserves, really.  I don’t know how parents with more children do it.

This past weekend, I spent some time looking in Conor’s baby names book, 100,000 Baby Names.  He peruses it to look for new and interesting names for the Miis on the Wii at the unit. I know, don't ask.

Aidan Paul means fiery and small.  That, in essence, is my typical son.  He’s got a certain je ne sais quoi, this little spark that can catch your eye. (Or maybe it’s just the mop of red hair flying by.)

His teachers describe him as eager, energetic, curious, and having an inquiring mind. (Translation: raises his hand even if he doesn’t know the answer, can’t sit still in his chair, and talks a lot. A lot.)

Other moms at school come up to me and say, “Oh!  You’re Aidan’s mom.  My darling so-and-so is always talking about Aidan this and Aidan that.”  Uh-oh. That can’t be good.

And yes, he’s small in stature.  I call him my little peanut, 10^th percentile in height and 25^th percentile in weight.  And that’s wearing heels and a weighted vest. What can I say? I’m 5’ 2” myself.  (Without heels.  And I’m not telling you my weight.)

But what Aidan lacks in height, he makes up for in his zest for life and learning.  He also happens to have developed a very big, huge, whopping case of anxiety.

Every night now, it’s a battle to get Aidan to fall asleep before midnight, without tears.  I’ve got to get a handle on this before Conor comes home.  Trying to manage the two of them at bedtime will be impossible if we don’t.

Aidan and I have our different theories on the trigger of the bedtime anxiety.  I suggest to him that it’s related to his brother’s challenging behavior.  After all, the bedtime angst started around the time that Conor’s behavior started getting really crazy. 

Aidan vigorously denies that it has anything at all to do with his brother. He maintains it’s because I sent him to spend the weekend at my sister’s while Jim and I went to an autism conference.  (He would usually go to Mom and Dad’s, but at that point, Conor really targeted Aidan with aggression and I didn’t feel it was safe for him to share the guest bedroom there.)

Sure, Aidan.  Spending a weekend in a quiet, sane place with a big backyard, a Wii, three older cousins, 9 holes of golf on Saturday, and a practice putting green on the deck would really make a person nervous.  Uh huh, sure, honey, it’s not the crazy chaos of a house with a pre-teen with autism and some really alarming behaviors that’s tying your stomach up in knots.

In the end, I guess it doesn’t matter.  For all I know, he would have developed anxiety even if he didn’t have a brother with autism.  Maybe it’s just chemical. 

What does matter is that the anxiety is starting to bleed into other parts of his life. And I’m afraid that it might take away that spark that makes Aidan, well, so Aidan.

In the meantime, I sit outside his room, listening to him toss and turn and sigh, read books about helping your child to overcome anxiety, and silently recite (line by line) the popular parenting book, Go the Fuck to Sleep.

Q & A Session

Conor greeted me on the unit today with a question.

“MOM, why do you need to be patient?”  He means why does he have to be patient; he’s not so good with the pronouns yet. He says my name in a really loud voice.

“Because being patient makes you happier, and sometimes you have to wait for things,” I replied, kind of stumbling around the answer and taking his hand. Sometimes talking with Conor makes me aware of how hard it can be to explain even the simplest things.  (Especially when, I have to admit, I’m not the most patient person myself.)

We strolled hand-in-hand down the unit with Sharon, his Clinical Assistant, following closely.  We put the sheet on the table and he got his lunch tray.  (They use sheets on the unit for tablecloths; it’s just easier.)

Then he proceeded to make my heart ache with his questions.

“MOM, what day does Conor have a going away party?” he asked, staring me right in the eyes.  Man, it’s startling how good his eye contact can be when he wants something.

“I don’t know, sweetie,” I replied.  Suddenly, it dawned on me.  He had asked Polly, his behaviorist, when he was going home and she must have told him to be patient. Two patients were discharged today.  He knows.

I’m so sorry, sweetie, I thought to myself, but you need to stay a little longer.

“MOM, why does Conor have to stay in the hospital so long?” he continued.  He puts his head in his hand. Damn, he’s not dropping it.  And his language is coming so easily today.

I’m not mad, it’s just so sad. I want to scoop him up and take him home right then, but we have to make sure the treatment holds.  School staff needs to be trained.  I need more training. I need more time. He needs more time.

“Because we want to make sure you’re all better,” I explained.  Seems like a half-assed explanation to me, but I’m really trying hard to keep it simple, so he understands.

“MOM, when will Conor have a going away party?”  He swivels his head to stare at me, still resting it in his hand.

“I’m not talking about it again until October 15^th,” I replied firmly, rubbing his back with one hand and my eyes with my other.  I don’t know why I picked that date.  It’s close enough to the real discharge date of October 27^th, so I guess by then I’ll feel comfortable that we’re on schedule or not.

“MOM, on October 1^st…” Conor trails off.  Stares at his food. He’s trying to negotiate the date of the diplomatic conference I just brokered with him.

“October 15^th, Conor,” I firmly say.  “October 15^th.  Now, let’s eat your lunch.”

“I don’t want to eat the meat,” he says.  I know, sweetie, I know.  Eat your lunch.

Just a nice picture

Two months after Conor was diagnosed, we had a party to celebrate his brother's christening.  Life goes on, I guess.

Photo courtesy of Aaron Haslinger/Primary Studios

Cheers!

“My psychiatrist told me that it was ok to have a glass of wine every evening, as long as I’m not self-medicating,” I told my friend Sue.

“Well, who cares why you’re having the glass of wine, “ Sue laughed wryly.  “As long as you have it.”

Ah, good friends are the antidote to the hard times autism hands you. 

A Regression Story Part 2

For Part 1 of A Regression Story, click here.

The theme for our regression vacation... crying

After my husband and I returned from our less-than-perfect tropical vacation with Conor and our close friends, I immediately called my son’s pediatrician.  That’s what you do, right, when something goes terribly wrong with your kid? You call the doctor.

I described the symptoms to him over the phone, stuttering and ahem-ing and clearing my throat. It made me nervous, saying the words out loud.

“So now you think he has autism?” he scoffed.

I don’t remember much about the conversation after that.  I think I stammered, “I don’t know” and hung up the phone.  Then I did what I always do in these situations.

Weeping, I called my husband at his office. I talk a good game, but Jimmy's the hammer.

Jimmy then called the pediatrician and demanded that our concerns be taken seriously.  Of course, he got the referral to Kennedy Krieger Institute.  (He didn’t even have to cry or justify himself.  Shocking, I know.)

And, oh, how I wish I called that person at Kennedy right away.  But I didn’t.

You see, when you start to ask people who love you whether they think their grandson or their nephew or their son’s playmate has changed, they don’t want to see it either.

“He’s a boy,” my mom advised.  “They develop differently than girls. Slower.”  (I have three sisters and no brothers.)

“I don’t see anything,” my older sister said. “And I’m on my second kid. And Conor’s a boy.” (She has three girls now.)

It’s true, you know.  Boys can develop at a different pace than girls.  And aside from the two alarming symptoms (avoiding eye contact and losing speech), Conor still acted like Conor. 

(Most kids go through periods of sleeping and not sleeping, so I thought that maybe I could just chalk that up to a “phase”. A phase that lasted nine more years. It was a symptom.)

It was like I existed now in an alternate universe.  He was Conor, but quieter.  Weirder. Harder. Less present. Different. But the same.

He didn’t line his cars up and play with them inappropriately. They still zoomed down the ramp of the toy. He continued to love bouncing balls back and forth, and to go to the park.  He didn’t sit in the corner and rock and bang his head. He watched his videos and danced along. We read our books and listened to our music.  He put the square block in the square hole and the round peg in the round hole.

But still… different. Far away, even though he was right there. Quiet.  Eerily quiet.

Finally, I asked the woman I had recently hired to babysit Conor whether she saw anything amiss.  (I was starting to think about going back to work part time and a neighbor who was moving out of state just raved on and on about her babysitter, so I eagerly scooped her up.)

Gloria wound up staying with us for more than 10 years.

I expected Gloria to say the same things everyone else did. 

And do you know what she said to me?  “Whatever it is, Alisa, you can handle it.”

I thought this happened only in the movies, but my jaw literally dropped down and I left the room. I couldn’t even talk. It wasn’t exactly the response I had expected.  I didn’t know it at the time, but her son has autism too.  So she knew the signs.

And it was very loving, what she said to me.  Because she knew, and she was honest.

But still, I didn’t call Kennedy Krieger.

You see, my mom didn’t really like Kennedy Krieger that much.  She had worked for years with adults with developmental disabilities.  She felt that Kennedy just labeled people, and then sent them on their way. To be fair, demand quickly outstrips supply in the autism world. It was a problematic relationship, I guess.  Little did I know how important that label can be. 

She suggested that someone from Infants and Toddlers come out to evaluate Conor.

That sounded good to me.  It’s a viable alternative.  The wait times at Kennedy can be quite long, and it’s expensive.  The Maryland State Department of Education provides the evaluations to you at no expense, and has lesser wait times. Many parents use this service to evaluate their child.

The woman came.  She saw.  And then she left, saying she saw no signs of autism.  What about the loss of language? I asked.  She shrugged.  “Just don’t want it so much,” she told me.

That pacified me for a few weeks, but still, I was troubled.  I enrolled Conor in a speech program at Loyola College anyway, since he clearly had lost his speech.  Thanks to the speech pathology students, he said his first (first again?) word. 

Dump.  As in “dump the sand out of the truck”. God, we worked so hard for that word. I lived in the sandbox. Dump, scoop, dump, scoop, dump, scoop.

We could feel that something was wrong.  It’s just not normal to have speech and then lose it.  To have eye contact and then lose it.  So I persisted.

Someone suggested Mt. Washington Pediatric Hospital.  Again, plenty of parents use the physicians there to receive a diagnosis.  It’s a good alternative if you can’t get into Kennedy Krieger for months and months.

So Jim and I shuffled off to Mt. Washington Pediatric Hospital and saw a developmental pediatrician there.  (Hey, at least I didn’t have to cry this time to be taken seriously.)

Dr. Christmas played with Conor, he listened to our concerns, he observed my son.  And he declined to diagnose him with autism.

“But what about the loss of language?” I asked.  “What about his eye contact?”

“Oh, he’ll certainly need speech therapy,” he replied.  “He plays so normally. I don’t want to label him as having autism at such a young age.”

This still makes me furious. How dare he? Because of his hesitance, his reticence to “label” my child, we wasted so much precious intervention time.  He cost us a year. A year of intervention! It still makes my head hurt. In terms of the plasticity of his brain, a year was forever.

Conor was two and ½ years old.

I looked for about 3 hours for pictures of Conor during the time between
the regression and his brother's birth.
I think I was too scared to take photos; this is about the only one I could find.

By this time, my husband and I were in full panic mode.  Something just wasn’t right with Conor, and we were getting frustrated at the lack of progress. We both have M.B.As, for Christ's sake, and we were working hard at this.  But we could not get any traction.

What the hell was going on with my kid?

My husband came home one day and said that a co-worker with a son with autism suggested this Clinical Neurolinguist they really liked.  She had a lot of experience with children on the spectrum.  We got an appointment (two months wait) and went to see her.

The Clinical Neurolinguist labeled Conor with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and told us it was quite mild.  “He’ll probably go to college and have a girlfriend,” she thought. “He’ll just be a little different. Quirky.”

We ramped up the speech therapy and started Occupational Therapy.  I felt relieved....for about five minutes. Mild, I can handle that I told myself.

Pregnant with our second child, I finally made that call to Kennedy Krieger.  We waited for months and months and months for that day to arrive.

The day after Aidan’s birth, my husband took Conor to be evaluated there.  I insisted.

Conor visiting me in the hospital.  He went to be evaluated the next day. 

No desire to interact with his brother, much less even look at him.

Seven days later, the four of us were sitting in the psychiatrist’s office to get the results. My stitches still hurt.

In her heavily accented English, the Chinese doctor told us the news.  “Your son has autism.  It is not mild, he is very affected by autism based on his ADOS score,” she told us.

“Not just mildly? I asked.  She shook her head.

I swear, I saw the floor buckle and I felt like I had been slapped hard, in the middle of my forehead.  I looked down at my week-old baby sleeping in the car seat on the floor, and wondered. 

Will he have autism too? What the hell do we do now?

Well, you do a lot. But that’s for another post.

Ave Maria

I think I can pinpoint the exact moment when Conor became very aware of the female form.  Oh, he has always loved the ladies, but in the young, fawning way that some six-year-old boys do.

But last summer, something changed for him.

Jim, Conor, Aidan and I drove to Rehoboth Beach, Delaware, to visit long-time friends. We’ve known Pat and Maria since, well, forever. 

Conor loved visiting their home and orbiting around their two kids, Ricky and Bridgid.  (Or Rick’n Chicken as Conor used to say during his name-twisting phase.)

So when they bought a beach house, we gladly headed down to Rehoboth to join them for a weekend of fun, sand and surf, and lots of laughs. 

(Free beach weekend… whoo hoo!)  As an added bonus, a mutual friend of ours who lives in Boston would be visiting as well.  Score!

Conor was thrilled beyond the pale.  He simply loves exploring people’s homes, peering in closets, turning lights on and off, gazing lovingly at the ceiling fans.  Opening doors, closing doors, he practically had a racing circuit around the house.

I was sitting outside on the patio, drink in hand, of course.  We had all finished a wonderful day on the beach, taking our turns in the showers in an effort to get the sand out of our cracks and crevices. Conor was running around unsupervised in the house. (I blame the drink.)

Maria didn’t tell me right away.  In fact, I think it was our friend Karen who spilled the beans, as they say.

“Conor saw Maria fully naked, Alisa,” Karen informed me, a little laugh in her voice.

Now, I feel the need to stop here and inform you that our friend Maria is a striking six foot tall, statuesque, athletic blonde with a quick wit and an infectious laugh.  I’m sure Conor got quite the eyeful, and, honestly, a tough comparison for the future ladies he peeps on.

My eyes bugged out. My hand flew to cover my mouth. “Wha?!?  No! What happened?” I squealed, mortified.

Maria laughed, thankfully.  She had gotten out of the shower, and was drying off, I guess.  Conor, in his fit of door opening and closing, well…. opened the door. (Without knocking of course, we’re still working on that social convention.)

The report was that he quickly closed the door.  I’m suspicious, though.

Ever since then, I’ve often caught Conor going on iTunes and staring longingly at Beyonce album covers.

So far, he’s downloaded three of her videos.

Fingers Crossed

At lunch today, I leaned back behind Conor and mouthed a question at his Clinical Assistant. “Does Conor know he’s coming home for a visit tomorrow?” I asked very quietly.  I didn’t want him to hear it from me if it hasn’t been stamped with the final approval of his behaviorist.

“Yes, I think Polly told him this morning, sure,” she replied.

“Hey Conor,” I said jauntily, “you get to come home tomorrow morning!”

His head whipped around to look at me, his big blue eyes growing wider.

“Conor is going home tomorrow to….?” he asked, full of expectation.

“Uh, um, to visit,” I stammered, caught quite off guard. “You get to show Miss Polly and Miss Sharon where you live and your bedroom and your classroom and all the fun things you have at home!”

That hopeful look in his eyes, though, really shook me.  See, he may be ready to come home for good, but I’m not quite ready, emotionally and mentally, for Conor to come back home.  Don’t get me wrong, I love my son with all my heart and I hate the idea of him having to be at this unit. And admitting him to the NBU was gut wrenching.

But, and I feel horrible for saying it, life is so… easy now, so functional. Now, the only one yelling, screaming and kicking in our house is my husband, and that’s only when the Red Sox lose. 

I don’t walk around with a painful knot in the pit of my stomach all day, waiting for the school to call or the screaming to start. (It’s kind of funny, you know—I always thought the saying “My heart sank” was just a simple cliché.  But now I know it physically feels like your heart has landed in your stomach.)

So I’ve asked Polly and Sharon to bring Conor home so that I can make sure that we’re implementing the treatment protocol correctly.  After our little tantrum experience a couple weeks ago, I want to make doubly sure that everything’s being done exactly as it should.

Selfishly, I am hoping that these visits will help me prepare for Conor’s rapidly approaching discharge date. I want to start being happy that he’s coming home, instead of just being nervous. (Well, if I'm being honest here, kind of scared.)

If I follow the protocol to the letter, if I do everything perfectly right, all of it exactly so, without deviation, Conor will (he will, I say, do you hear me?), HE WILL get better and be able to stay at home with us. And life will go back to our version of normal, when Conor didn’t have all these behavioral problems.

I think. At least, I hope so. I've got my fingers crossed.

Here comes the bride...

When Conor was a young seven years old, my younger sister became engaged. (Insert heavenly ♬ ♬ music here.♬♬ )  My mother was thrilled, since Rachel was getting up there in age.  

I kid, I kid, we were thrilled she finally found a good guy, a real keeper.  (Oh vey, the guys she brought home, I could fill a book.)  Tom's great.

Most importantly, Grandma Middleton thought Tom was soooooo handsome. (That's why his picture graced the mantle above her fireplace. She tried to deny it, but it was true.)

Rachel is in the middle.  She's the one with her eyes starting to glaze over.
Bachelorette party, need I say more?
That's my youngest sister, Leah, on the left. Nanci, my older sister, couldn't make it.
We used to tell Rachel that she was adopted since she was the only brunette out of the four of us.

A wedding!  Oh my! (Squeal of delight here.)

Ok, enough with the excitement and happy thoughts.  What affected me the most (and it is all about me, at least in MY blog), is that Rachel graciously offered to have all of her nieces and nephews in her wedding.  And Conor was most definitely invited to be in the wedding party. (That's three nieces and two nephews, by the way. Brave.)

I love my family.  They love and accept Conor, so much, so totally.

But still, at this point, we were well on the autism journey with Conor.  We knew what it meant to try to have a kid with autism in a wedding.  Or at the grocery store, for Pete's sake.  And we're not talking a wedding in the backyard of my parent's house.  It was a wedding, wedding.

Thankfully, my sister was no bridezilla.  But still, the stress, my god.  The tuxedo, the guests, my Mom's friends would be there. Need I say more?

I can tell you exactly how many hours I slept the night before. Seriously, I still remember.

Zero. 

I stayed up all night long, worrying and worrying about Conor.  Would he have a tantrum, would he walk down the aisle, would the tuxedo be too uncomfortable, how would I keep him from climbing the trellis of plants, would he sit quietly through the ceremony?  Could I get myself, and Conor, and his four year-old brother dressed and to the ceremony on time?  (The husband was on his own; he can usually dress himself.)

Smartly, I had hired a therapist to come with us, and she would follow him during the reception, but still... would Conor ruin the entire day?

Thankfully, my entire night of insomnia was in vain.  Conor did a wonderful job, walked up the aisle with his camera and his older cousins like a champ, and sat quietly through the entire ceremony.  I was shocked, thankful, and exhausted. Quite honestly, when I told my mother's second cousin that Conor had autism, she was surprised.  (Of course, she hadn't tried to have a conversation with him, but he did well.)

My sister is a professional photographer, so, of course, she picked an awesome photographer for her wedding.
Here's a MUCH younger me and a MUCH younger Conor.

Unfortunately for me (and my husband), I spent the entire night before my sister's wedding worrying... about the wrong kid.  Apparently, my typical four year-old decided that he was going to be the one to act up at my sister's wedding.  

Are you $#@%^&*^ kidding me?

Here is a picture of Aidan, who decided that he was too shy to participate fully in the wedding and this is the picture we get after threatening him with no TV for the rest of his natural life.

This is the good picture.  Grrrrrrr.

Throw in the, um, towel?

If I could have one wish for Conor, other than curing his autism, it would be for him to have relief from his obsessions.  For truly, Conor’s obsessiveness (or perseverative behaviors, as they say) is a tremendous obstacle to his progress. And to our family’s quality of life.

It is, to be blunt, the bane of our existence.

He does come by a touch of it honestly.  I have my own little consuming interests, like my lust for organizing and re-organizing the closets, my addiction to mystery novels, and a passion for John Mayer and his music.  But I keep them under control, thanks to an awareness of social mores.

Like, for example, once you’ve thrown your panties at John Mayer, it’s probably a good time to leave the concert. 

But Conor doesn’t have that social sense.  And without an awareness of social rules and guidelines to help him mitigate his behavior, things quickly careen out of control. 

Let’s take his obsession with girls, for example.  (Public Service Announcement:  stalking is a serious crime, Conor.  Social guideline #1.)

Conor might meet a girl on the unit, let's say. He’ll ask what her name is.  Appropriate.  He’ll query you about her age.  Naturally.  Then, the next morning, he’ll ask, “Conor wants to buy Stacy P. a calculator?” 

But the calculator is $30, and we can’t be buying every girl we just met a calculator (Social guideline #2). We don’t even know this girl. 

So we say, no, that’s ok, we’re not buying her a present.  (And, to be frank, it’s often just as much about purchasing the calculator than giving it to the girl. Sorry, Stacy P., I know it hurts, but it’s true.) 

“Why can’t Conor buy Stacy P. a calculator?” he asks.

Because it’s too expensive, Conor. (#3)  And we don’t know Stacy (refer back to social guideline #1 re: stalking).

And it’s not her birthday. (#4).  Because it’s creepy when a guy you just met buys you an expensive gift, unless that guy is Brad Pitt, of course. (#5)

He doesn’t care that he just met Stacy, and that she has no desire to have any kind of relationship with him.  It doesn’t matter that he doesn’t know her family, or even what state she’s from. It has nothing to do with her birthday, or whether it’s even close to Christmas.  He just doesn’t care. 

He wants to scratch that itch. He will nag you, and tantrum, and obsess, and whine, and caterwaul, and gnash his teeth, and tantrum some more for days. No, weeks even.

 

So we write social stories, and we put a behavior plan in place. We ignore requests, and deny access to reinforcing items if he asks more than four times in two hours about the damn calculator.

(She’s really not even that cute, Conor, seriously, let it go.)

Oh, and we medicate.  Boy, do we medicate.

It’s enough to make you want to throw in the towel.  (But not your panties; you have to save them up for the next John Mayer concert.)

It's Crumbly

Many days, I find myself trying to mentally rearrange the building blocks of my life in order to attempt to fix the stress of raising this child with autism.  Surely I can’t be the only mom that does this. 

There’s the work block, the house block, the children block, the school block, the extended family block, the hired help block, the medical block. 

I move them around in various configurations, hoping that I’ll land on the one that is the answer to my question.

How can I make my family functional again? More… normal?

I stack them, in my mind, in various ways to try to solve the puzzle, but each one has its own challenges and obstacles, its own stresses and demands, its own cost.

It’s like Equilibiro, a young children’s game that my typical son enjoyed.  You follow the pattern with the blocks, and when you match it exactly, you win!  As an adult, it’s easy peasy (when you have all the pieces, that is). A block here, a block there, move this one that way and-boom-you’re good to go.

The problem is that the one block that I would like to move, the autism block, is the one that I can’t seem to budge.  It is, by any definition of the cliché, the metaphorical stumbling block.

And no matter how I arrange those blocks, no matter how hard I try, I can’t seem to get around it.  That autism block is always there, at my feet, tripping me up and pushing me around and dictating where all the other blocks fall.

It would be nice if that autism block supported us, gave my family purpose, and would anchor us.  Instead, it seems like it’s always crumbling and letting us down.

It’s a crumbling block, I guess.

Boo-hoo

Last night, I was halfway through washing the dinner dishes when I started.  It hurts, you know, when the warm water and the dish soap run down arms full of scratches and bites and pinches and kicks and headbangs.

I bawled and I bawled and I bawled and I bawled and I bawled.  I sat down on the floor in the middle of my dirty kitchen and I bawled some more. 

I cried for so long and for so hard that I know it’s why I have a migraine today, but I just couldn’t stop.

“I CAN’T TAKE THIS ANYMORE!” I screamed in my head.  I didn’t scream it out loud because it’s scary enough to see your mom cry like that.  I didn’t want to freak my typical kid out even more than he already is.

And all I want to do is crawl into the bottom of a bottle of wine and just drink until I feel nothing anymore. Nothing.  Nada.  Zippo. Zilch. Zero.

“Your face looks funny, Mom,” Aidan said to me, wringing his hands.  “Are you really tired?”

“Yes, baby, I am just really tired,” I replied.  He hates seeing me cry. No 9 year-old should see his mother cry like that.

It doesn’t help that I know why he had the tantrum.  Today was the first day my husband and I implemented the behavioral treatment plan at home. 

I don’t think Conor liked that very much.

Just checking in

For my current feelings regarding autism, click here.

Blast from the past

“Oh HI,” the woman cheerily waved at me on the unit. “I’m Paulie’s mom, do you remember me?  Conor and Paulie went to preschool together. In Miss Robin’s class!  I work here now!” Bright smile.

“Uh, no, but how are you?” I replied.  “Conor’s, well, here. Here we are!”  Fake smile.

Of course, of course I would run into someone that knew-us-when now. Today.

When I have no make up on, my hair is a disaster, my bra straps are showing because I wore this stupid tank top, and my kid is in a locked unit for children with autism who are a danger to themselves and others. 

Of course I would.

It’s like running into your high school boyfriend in the mall when you go home to visit your parents and you have the biggest zit on your nose.  Yeah, like that.

Or when you dash by Target, happen to find yourself standing in front of that prissy friend of your mom’s that you just can’t stand, and your three year old decides it’s a good time to practice his curse words at the top of his lungs.  (Curse words that he learned from you, of course.)

Embarrassing.  Agonizing.  Is frazzling a word?  Frazzled.

Oh, look at me, me and my kid who’s having a rreeeaaalllly tough time of it lately.  So happy that you remember me!  NOT.

I have no idea why I found this so embarrassing.  It’s not like this mom doesn’t know what autism is like.  She doesn't just work it, she lives it too.  Her son, she told me, is still relatively nonverbal, and she mentioned that his level of self-injurious behavior has come down a lot, and he hits people sometimes.  Well, her but also other people.

But, I think she was just trying to make me feel better.  Come to think of it, I think she felt kind of awkward.  I mean, what do you say to a mom in my current situation? How’s it hanging?

A little to the left, thanks for asking.