What Mattered Before

The MRI.  Remember that?  Yeah, I’d forgotten too, even though it was so horrible at the time.  Funny how the world puts things in perspective for you sometimes.

My son had reported to me that he wasn’t “seeing out of both eyes” about a month and a half ago.  I took him into the eye doctor, thinking it was about time for him to join in the family tradition of wearing glasses.  Except the eye doctor didn’t find appreciable differences between his two eyes in terms of vision, and worried maybe it could be a sign of a larger problem.  With my son being on the autism spectrum, there was truly no way of knowing if this was a recent occurrence or if this had been happening for years and he just hadn’t been able to express it clearly to us.

Yeah.  So I spent the interim time between the eye doctor visit and the scheduled MRI scan freaking the $#@# out

The scan was done on December 12.  Because my son is on the spectrum, the scan was done in the hospital, under anesthesia.  Hospitals aren’t exactly warm fuzzy places.  And despite every one doing everything they could to be super incredibly nice to my son (even putting a hospital bracelet on his stuffed bear, who was allowed to stay with him the whole time), it was a really unpleasant experience.

My little guy held it together pretty well until we made it into the room where the MRI machine was.  He was still awake then, and they had a mask for him to breathe into to put him asleep.  They were going to wait to put the IV in until he was asleep (smart move).  But the mask and the huge machine and the four people it took to man it all not surprisingly made him very nervous.  I held his hand until he got drowsy enough to let it slip out of my hand, and then they led me to the waiting room.

The scan took an hour.  They scanned his head and neck.   Once they were done, I followed his gurney with him still asleep to the same day surgery recovery area.  Thankfully it was mostly empty and quiet, because when my little guy woke up, he was scared out of his mind.  He cried, he thrashed, he really freaked out when he saw the IV in his arm that wasn’t there when he went to sleep.  He felt nauseous, he was disoriented, and he just couldn’t hold it together.

It felt so, so very hard at the time.  I remember thinking how terrible it was, how awful it was, what a terrible day it was.  How I couldn’t wait to get home and let him snuggle on the sofa while I poured myself a glass (or three) of wine.  I worried what the scans would show us, how awful the news could potentially be, and how I should enjoy these blissful few days of not knowing.  Because life could be about to change.

Two days later, of course, the world did change.  I didn’t have the news yet about the MRI.  But obviously, I didn’t mind.  I knew that whatever the news was going to be for us, it wasn’t going to be as bad as what had happened to those families in Newtown.  Even if it was the worst news, I would have time to prepare my child and my family and myself for the worst, a gift those families didn’t have.

Finally, a few days later, I got the word that the results of the scans were normal. It was a relief, a pin prick of good news in the numbness of that week following Newtown, a week of funerals and sadness and fear.  My little boy will be fine.  My little boy doesn’t have the worst thing that can happen happening to him, and neither do we.  We were lucky.  Again.

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Freaking the @#$%#$ Out

Pardon me while I spend the next seven days trying not to freak the $#@#!$ out.

My son, who is on the autism spectrum, came home a few weeks ago with the results of his eye exam at school.  Here in the Northeast, we are fortunate to have nurses in every school and they run vision screenings  once a year.  Michael’s are always fishy.  They always send me a note saying I need to get his eyes checked out.  But the pediatrician always says that his eyesight is fine at the well child visits.

A few years ago I decided I better take him to an eye doctor, because I wear glasses, and so does my husband.  My husband’s eye problems are very minor and he didn’t even start wearing glasses until he was in middle school.  But mine are severe.  I’ve been wearing glasses since I was two, and my mother was partially blind in one eye.  I have astigmatism, extreme lazy eye and am far sighted.  So I figured I’d better get an eye doctor involved since there were questions.

Michael’s visit was a disaster.  Three year ago, I think it was.  Since Michael is on the spectrum, you can imagine what the bright lights, the asking of questions by strangers, the dark rooms and the strangers in the waiting room brought us.  But the worst was the drops to dilate his eyes.  I ended up having to hold him down on the floor so they could be administered.  And after that?  He was not exactly compliant with answering the questions the doctor had.

Still, the doctor gleaned enough information then to tell me that he didn’t believe M needed glasses at all.  I was shocked, but relieved at the same time.

Fast forward till a few weeks ago.  Michael gets tested again at school, and comes home telling me that he mostly sees out of only one eye.  This is classic lazy eye talk, so I promptly seek out a new eye doctor based on friend recommendations (since the other one didn’t exactly handle M’s freak out very well) and make an appointment.

The whole appointment was going about how I expected.  The doctor was, as promised, fabulous.  Funny, caring, really careful knowing Michael’s issues.  Michael is also older now, so much better able to handle his discomfort.  There was lots of reading letters, looking through various lenses, and I was sure that they would be writing me the script for Michael’s new glasses.

Except, no.

Michael’s vision is nearly the same between the two eyes, and both are below the threshold for needing correction.  He doesn’t need glasses.  But he definitely is favoring one eye over the other.  The question is, why?

The doctor was perplexed.  Normally, lazy eye comes from disparity in vision between the two eyes.  One compensates for the lack of ability of the other.  But that wasn’t the case with my boy.  Either his eyes had been much more disparate in the past and he hadn’t been able to communicate it, and now the eyes are growing and changing and becoming less different, but the habit is in place.

Or.

Or this is a recent occurrence.  In which case something else is going on.

There’s no way to know.  M says that it isn’t recent, that he’s always been this way, but it’s hard to know, because his concept of time is not the same as the rest of us.  Also, he never was able to communicate clearly about much until the last few years.  His teachers never have thought (even last week when I asked them) he had a vision issue.  He’s never had headaches or crossed eyes.

So, we have to find out if there is “something else” going on.  Which means an MRI scan at the hospital, next week.  With M’s issues, he’ll have to do it under anesthesia, because there’s no way he could lay still for the amount of time he’d need to.

It’s probably nothing.  It’s probably a situation that he’s had forever and is just being able to communicate.

I have to wait at least seven days to know that for sure, though.  And in that time, I have to be sure not to consult Dr. Google.  Because Dr. Google is scary.  He talks about things like aneurisms, and tumors and all sorts of scary things.

So I will watch, and wait, and try not to freak the #$@$# out.  Still, if you have a prayer to throw in our direction, I would be grateful.

Destination: Content

Well, it’s finally here.  We are packing up our suitcases and traveling today overseas.

I have never been to Europe before, so this is a really big deal for me.  I’m continually amazed at the experiences my children are lucky enough to have at a young age.  No one I knew growing up went to Europe.  My kids know people who travel out of the country all of the time; friends of ours just got back from Italy.

I’m excited and apprehensive.  I don’t speak either language of the two countries we’ll be visiting, and neither do my children.  My husband, however, does, so I know we’ll be fine.  It’s more of the independent streak I have, not wanting to feel like a child and having to ask him what everyone is saying.  Or have him correct me when I do try to speak.  But I’ll need to get over it, because I’m so fortunate to be able to do this.

There are so many times when I question the path I chose in my life, the choices I’ve made, the place I’ve landed.  But then there are other times, days like today, when I marvel at the wonders those choices have brought to me.  My three beautiful kids.  Being able to go to Europe.  Living in an area I never even imagined growing up.  Having the chance to send my kids to college and watch them thrive and flourish without (too much) worry.

I remember thinking when I was growing up in a house where money was too scarce that all I wanted to have as an adult was the ability to be “comfortable”.  To not have to worry about each penny, to be able to know that you’ll be able to pay the mortgage every month.  And here I am.  I’m there.

That’s not to say that things are perfect around here.  My husband and I are, continually, a work in progress.  But as a friend of mine said the other day, “It seems like you used to always have one foot out the door.  But now it seems like you’ve figured out a way to make it work.”  There are many days when it doesn’t exactly feel like that, but I guess it must be true.

So today?  Today I am content.  I am looking forward to a once in a lifetime trip that I could have never imagined for myself even just ten years ago.  I am amazed that my special needs son, who five years ago could barely handle sitting through a Mass can now travel on an airplane and look forward to going a place where everything will be different.  I’m sure it won’t be easy, but I know we’ll get through it, and even enjoy it.  How wonderful.  How amazing.

If I am lucky I will post from our destination.  Or maybe the lack of posts you see here will mean I am just too busy having a fabulous time.  Instead of writing about life, I might just choose to live it.  🙂

Adrift…And….Feeling Stupid

You know what I hate?

I hate when you go and read someone’s blog and you discover that, through their own words and takes and experiences on life, that you really don’t like them.

This doesn’t happen often to me, of course.  I go to blogs that are written by people that I am sure I would like, if I met them in real life.  I like the way they write, their take and view on the world, I see in them something I connect with.

But there’s this one blog I keep going back to (no, I’m not going to say whose it is), and I am not sure why, because I really don’t like the woman who writes it. There’s something about her that bugs me.  She seems to take for granted all that makes her life wonderful, and envy worthy.  She judges others and makes a living off of doing it.  She complains about her weight, even though she seems perfectly healthy and fine.  She is far too focused on material things and awfully preoccupied with having that which others have that she doesn’t.

I honestly don’t know why I keep going back.  I discovered her blog last summer when she was dueling with another blogger (whom I *do* like), and it was like the train wreck that you can’t stop watching.  I just kept going back to see how much more cringeworthy she could get.  And she didn’t disappoint.

Fast forward to Just. This. Second when I typed into this blog a whiny little post about how I ferry my kids around and how I drink too much and how my husband isn’t nice enough to me and how running is the only thing I seem to be doing right these days when it hit me like a freaking Mack Truck.

I’m her.  I’m the whiny blogger that doesn’t appreciate all that she has and how lucky she is.  Here I am whining about how all I had to do today was run to Target and do some laundry and ferry some kids around.  Sheesh, not a bad life, right?   Who complains about that?  I titled it “Adrift And…?”, a nod to one of the ridiculously too many Grey’s Anatomy episodes I had plenty of time to watch this weekend in my free time.

When I clicked off of my blog entry, the next page I clicked on was a BlogHer entry from Shannon Des Roches Rosa.  About a parent of an autistic child so stressed and so freaked out that she went all Crazy Insane Person and killed her son and then herself.  Me?  I read a book back and forth aloud with my autistic son and then we had dinner (steak and salad and bread) and then he willingly put on his shoes and got in the car so I could take his sister to play practice.

There are lots of people out there with problems.  My whiny, angsty boredom is not a problem.  It’s a blessing.

Consider my ass duly kicked.

 

A New Reality

It should have been more momentous.

Sitting there, in a classroom last week, listening to my autistic son’s teacher tell me that he was doing well in all his subjects was the stuff of my dreams a few years ago.  A reality I couldn’t imagine, but one I hoped to attain in the far away world called Someday.  A scenario I’d all but dashed after his preschool speech therapist told me my son would “never be normal” and would “never catch up” after I’d seen their IQ testing.  He’d tested a 70, just a cut above mentally retarded.

But somehow, this is now my reality.  My son is in fourth grade, and after years of struggling to help him assimilate into the main stream, he is there.  I sat across from his teacher this year only to hear glowing after glowing report.  My son wasn’t just doing well “under the circumstances” as is usually the case.  He was simply, “doing well.”  He is on grade level in all of his subjects.  He has friends and in fact shows concern for others who are not doing well socially or academically.  He is funny and well liked.

It took a long time for us to adjust our expectations for our youngest son.  To put ourselves in the mindset of not just being parents, but being “special needs parents”, a small but mighty breed of fighters whose sole focus is advocating for and pushing their child as far as they can reasonably be expected to progress.  To accept that he might not ever live an independent life, or go to college, or hold a job, or even drive a car.  But we did it.  We were there.  It was our reality.

It isn’t anymore.

It almost feels too soon, too scary to think about readjusting our expectations and goals again.  To dare to dream that someday our son might just live, but thrive.  That we could experience days of pride and joy for him as we have with our oldest child.

For now, I will be happy with where we are.  It’s going to be a while, I think, before I know that this is new reality is going to stick.

Another Day In the Life

Michael lost it the other night.

It had been a good day for him, in fact a great start to the school year so far.  Last year, he stumbled so badly at the beginning of the school year, in terms of academics and behavior, that I actually phoned his teacher on Friday in tears wondering if he should have been held back.  This year, has been much different.  The behavior journal that became our communication lifeblood for the last two years has been stellar.  He’s needed minimal homework help in the assignments that have (yes, already) come home over the course of the week.  He proclaimed that “Fourth grade is much easier than third grade,” proudly, happy with his luck and circumstance this year.

So I figured Wednesday night would be an easy evening.  My husband’s cousin, who is our only family anywhere nearby, lives in the same town as we do.  A happy circumstance that occurred not long after we moved to our tiny, New England town; they’d lived about thirty minutes south of here, in the active NYC commuter corridor, but had been looking to move to a place that had better schools and a slower pace.  They’d liked what they’d seen when they came to visit us, so they purchased a home about five minutes north of us. A lovely, four bedroom home with a pool and a deck…and a well.

Wells and septic tanks are commonplace here in our tiny town, but they were so foreign to us as transplanted Midwesterners that our own home search included prerequisites that no one out here seems to care much about:  city water, gas heat and stove, and central air conditioning.  This placed us in a home that wasn’t ideal for other reasons (namely, we live on a busy street across from a cemetery), but these items were deal breakers for us.  And in the nearly seven years we’ve lived here, we’d started to question our wisdom; we could have had a much larger house on a quiet street if we’d only decided to go for a well, or oil heat.  But R’s cousin does have a well, and it went kaput two days ago.

Regardless of whether it was storm damage or something else, the family asked to spend the evening at our house.  I happily agreed, and decided upon a menu for a crowd that would simmer while her kids took their hot showers.  So I made beef stew, since it was a cool, early fall, rainy day.

I should have known.  Beef stew is food all put together.  Food covered in a sauce.  Two things that are triggers for my boy.  Food can’t touch one another in Michael’s world. It also needs to be plain; he never gets sauce, or salad dressing, or toppings on a sundae.  Never.  Why I thought this would be OK for him, I have no idea.

But my beef stew set off a series of events that started with a sad face at dinner and ended with me pushing him (all nearly 80lbs of him) up our stairs to his room so the cousins would not hear him screaming at me at the top of his lungs.  He didn’t hit or strike out at me, thank goodness, but he entered a place that I don’t often see anymore, where my sweet boy changes into an angry, belligerent child who is out of control and looking to therefore control everyone else.  It took me an hour to calm him down; I’ve learned for the most part that the only thing to do with these incidents is to ride the wave and let it peter out.  As the anger and the emotion takes control of him, he gets more and more tired until the spell just finally breaks and he returns to his senses.  At school this happens in the principal’s office or a quiet room.  At home, I had to force him up a flight of stairs and into his bedroom, a safe zone.

It will be telling to see this year if we have more of these incidents at home or at school; last year they were largely confined to school.  I worry every day that he will not “grow out of” these tantrums (though, to be fair, they happen every few months rather than the every few days or even hours that they were when he was a toddler) and that he will not be able to function in society.   But for now, we got through it, and by the morning, the storm was gone.  My sweet, smiling boy was back, and racked up another stellar day at school yesterday.  I still see the clouds on the horizon, but I am out of the rain…for now.

Two Steps Forward, Three Steps Back

“You need to come to the school and pick him up,” said the voice of my son’s special education teacher on the phone.

We’d been riding a positive wave of good news as far as Michael had been concerned.  His last conference had brought me to tears; he was working on grade level, in the mainstream classroom.  He was doing well socially, making friends.  There were days when life wasn’t defined by his autism; we’d traveled to Florida by air last month without asking for the special treatment we used to to avoid lines and waits and things that my son didn’t used to be able to handle.  But now, now Michael gave us hope that someday, things would be just like everyone else for him.

But all the good didn’t come without a price.  Michael was doing well in school because he had a team of teachers pushing him this year; he didn’t like to be pushed.  I’d been asked just now to come and pick him up from school because he was too agitated to get on the bus, having spent most of the day in the school office after a tantrum in his classroom.

I walked into the school office five minutes later to find Michael underneath the principal’s desk.  I wanted to cry.

“It’s OK, he’s fine under there,” she reassured.  “Let’s talk about what happened today.  Michael was upset about the difficulty of his reading lesson, and so during class, he decided it was time for him to go home.”

I clasped my hands together, pressing them firmly in order to avoid the screaming I really wanted to do.

“He gathered up all of his things, and put on his backpack and coat, and tried to climb out the window.”

Oh, God.

“But he couldn’t get past the screen, so then he bolted down the hallway and out the front door.  Don’t worry, we were able to get one of the male teachers to stop him just five steps outside the door, but he’s getting too heavy now for most of the women teachers to handle that.”

Sweet Jesus.

“So he told us when we finally got to the office that there would be no consequences today, that he was just done with school and not coming back here ever again.  He kicked his aide and tripped her on the way down to the office,” the principal added.

Red.  I was seeing red and black spots in front of my eyes.

“He finally calmed down about an hour later, and we have been able to get him to do some work down here.  I’ve told him that he needs to come straight to the office tomorrow, and when he’s calm enough, he can go to the regular classroom.  It’s a shame; the kids really feel badly for him, know he’s having a hard time, and miss him when he’s not in class, so hopefully tomorrow he can pull it together and have a better day.”

I looked at my son, who had come out from under the table upon seeing me and hearing that his day was being described in detail.  He looked sad, and embarrassed, but also a bit angry too still.  “Sorry,” he said in a melancholy voice with downcast eyes.

I’d forgotten that mixture of fear, helplessness, anger, sorrow all stirred with a hint of shame and insecurity that came with my son’s disorder.  We’d gotten to the place where we did the therapies without even thinking about them, put the proper program in place at school, and thought we were reaping the benefits.  I felt it all crumbling and crashing down around me as I stood there, surrounded by Michael’s team, all of them apologetic and optimistic for him.  I needed to be his mother in that moment, one of the perfect ones you see on TV who knew just how to handle this type of thing.  But instead I felt like a child myself, wanting to yell and scream and have a different life, a normal life where you didn’t have to get called into school because your child couldn’t handle getting on the bus.

“Thank you all,” I said to the group assembled, trying to put on the mask, all the while with tears pricking the corners of my eyes.  “We’ll have a long talk about this tonight and come up with a plan going forward.  Now let’s get our things, Michael, and get home.”

Two steps forward, three steps back.

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