RSS Feed

Tag Archives: motherhood

A New Experiment

As I’ve noted before, I often feel like I’m conducting experiments in  how I raise my child.  Connor is not typical, nor is there any clear way to treat autism.  Thus much of how I parent is based on trial and error, collecting data, and performing experiments.

The new experiment for this summer is trying out a typical preschool.

Observation: Connor has entered a stage in his development in which he is mimicking classmates and other children he comes into contact with.

Problem: Given that Connor spends the majority of his time with other special needs children, he has begun to mimic symptoms and problematic behaviors of these other children.  His language also stopped developing, keeping it on par with classmates.  Connor has displayed frustration and displeasure in attending his regular special day class.

Hypothesis: Being around neurotypical children will encourage Connor to use more language and develop typical social skills, while reducing problematic behaviors.

Proposed Method of Research: Connor will attend a typical preschool, with a developmental program, two days per week.  Connor will also engage in extra curricular activities with typical peers, such as swimming lessons, play dates, and unstructured social environments (ie playing with unknown children at parks, beaches, etc.).  Connor will continue to attend special day class two days per week, as well as participate in a reduced ABA schedule, regular speech therapy, therapeutic horseback riding, and physical therapy/gymnastics.

Findings: TBA

Obviously when I was mulling over the problems and possible solutions in my head, my reasoning was not so clear and scientific.  In fact, I distinctly remember telling Connor’s psychologist that a large part of why I wanted to conduct this experiment during the summer was that I had “a gut feeling” that this was the right thing to do for him.  I’m hoping the science will back me up!

For the most part, at least in the most current research, the benefits of inclusion seem to outweigh the possible problems, but there are still causes for concern, still reasons to worry.  The recent research encourages me that this is right move for Connor, who is on the high functioning end of the spectrum.  And so far, Connor seems to be loving his new school! In class he isn’t speaking to much, and he has had a few frustrations, but at home I can already see some positive effects.  Just in the week since he’s started, Connor is using full sentences and spontaneous language more often than before.

Now maybe this is just a conincidence, and maybe it’s not.  Only time will tell.

Here are some articles on the benefits of inclusion:

Why Inclusion Benefits all Kids:

http://www.parents.com/blogs/to-the-max/2012/11/06/uncategorized/why-inclusion-in-classrooms-benefits-all-kids/

Benefits of Inclusion:

http://www.ehow.com/info_8656410_benefits-inclusion-preschool-children.html

Maryland Department of Education list of Inclusion Benefits:

http://olms.cte.jhu.edu/olms2/3841

 

Advertisements

Short and Sweet

Or maybe not so sweet, or perhaps not as short as you would’ve liked.

Part of parenting is wanting to share the world with your child.  You want them to delight in all the things that you delight in, to show them the mystery and wonder of the world.  And in doing so, you might recapture some of your own awe at how beautiful life can be.

Parenting an autistic child means that sharing the world with your child is a risk.  Every outing is a potential disaster,  not in the same way of my three-year old might whine and cry kind of disaster.  No, I’m talking about a full-scale meltdown at the drop of a hat.

Take, for instance, the Christmas Train.  This is a cute train at Irvine Regional Park that runs in the evening with the railroad lined with Christmas lights.  The train runs from the “depot” to “the North Pole.”  It was something I truly thought Connor would enjoy since he’s super into Christmas this year.

Unfortunately, I did not account for how much waiting in line would be involved.

Autistic children are cursed with an inability to wait.  As noted by a father of an autistic boy in this essay, many children on the spectrum just do not have a sense of time.  They cannot count tell how fast or how slowly time is moving.  They cannot pace themselves.  And when they start to feel anticipation for something, it builds quickly and uncontrollably towards a crescendo that may be ill-timed.  When that expectation for joy isn’t met, anxiety and frustration build quickly on the heels of disappointment.  There is no self-regulatory mechanism within my child (or children like him) to stop the avalanche of emotions or to calm himself once the avalanche has begun.  I use the word avalanche so you can truly picture what it is like.  It begins with a little crack at the top of the mountain and ends up with an entire hillside coming apart.  There is no stopping it either.  The best you can do is to ride it out and hope that there will be survivors at the bottom.

So when Connor was incredibly excited for the Christmas train, waiting in three separate lines just wasn’t going to work.  We waited in line to get to the depot.  Then we waited in line inside the depot for the train.  And once we disembarked the train, we were supposed to wait in line for Santa.

Not happening.

What was supposed to be a short and sweet activity was turning into a debacle of wait times and lines filled with strangers.

Connor could simply just not calm himself down any further.  There were no distractions in the world that were going to take his mind off the fact that to get to Santa he would have to wait in line for a minimum of 30 minutes.

So the whining began, followed by crying, quickly devolving into screaming. Then there was no stopping it.  The meltdown had begun.

Of course, like many other parents of ASD children I have an arsenal of weapons I use to avoid such a situation.  We do a countdown, we have games we play, I have my iPhone filled with Connor approved apps, I have juice and snacks in my purse, and I have an unending ability to completely embarrass myself in public for the amusement of my child.

Yet all of these techniques failed.

We had to move on to calming.  I tried to get him to self calm, using phrases he knows and can repeat.  I tried using “first…then” scenarios to get him to comply.  I gave him deep pressure hugs.  I tried to bribe him!  Nothing worked.  He was just too far gone and we just had to wait until he came out of it.

A year or so ago, the tantrum would’ve easily lasted an hour or more, only petering out when he had exhausted himself.  Now, I am happy to report, these types of tantrums last only 20 minutes!  That is amazing progress!

Connor was able to calm himself as soon as we got back on the train to return to the depot.  We had no more whining, no crying, no screaming, no throwing himself on the ground, despite the fact that we had completely missed Santa.  A year ago Connor would have continued to cry and beg for Santa until he fell asleep.  Last night he accepted that the evening was over and it was time to go home.

He got an ice cream on the car ride home.  I think he deserved it.

Conducting the Home Orchestra

On days like today I always feel like being a stay-at-home mom is something like conducting an orchestra.

When I was a full-time working single mom (which according to Romney might drive Connor to engage in gun violence–sorry for the politics, but come on! that’s funny!) at the library and Connor was at day care I didn’t so much conduct as scramble.  Every day was a challenge to get things done.  And many days things just didn’t get finished.  Laundry piled up, dinner was composed of various take out orders, the household disarray grew larger daily, to-do lists grew longer instead of shorter.

Now that I’m stay at home I try to keep on top of everything.  The laundry is done when the bins are full.  The pantry is always well stocked.   Home-made food fills our fridge.  Being at home full-time with Connor in school full-time actually gives me time for projects of my own…sometimes.

After saying all that I want to clarify that things don’t always go so well.  Having an autistic preschooler means that there is a lot (A LOT) of chaos in my life.  Whether it’s getting no sleep from anxiety fueled nightmares or having to constantly rearrange our daily schedule to fit in all of the ABA therapy sessions, speech therapy, mandated parent education, etc.; life is still pretty hectic.  Plus I volunteered to be Connor’s room-mom and I spend way too much time on Pinterest late at night, meaning I think being room-mom=being Martha Stewart (if only!).  That’s all on top of trying to run the house like it’s my job, because well it is my job!

I’m a librarian who is currently a stay-at-home mom.  If I’m not making sure my house is being run darn near perfect, then I feel like I’m failing at my job.  I don’t earn a paycheck so I feel like I have to earn my keep by running this house like it’s going to be in Better Homes and Gardens next month.  Ok, maybe that’s a bit of an exaggeration.  Mostly because my house is older than I am and has never been remodeled.  I don’t think Better Homes and Gardens is going to do a piece on my nearly counter-less kitchen and ancient oven!

But I digress….

In order to achieve my goal of having my home run like a well-oiled machine I need to do a lot of work.  Gardeners, housekeepers, handymen, all need to be directed to fix/clean/maintain various aspects of the house.  Errands and chores have to be coordinated to maximize efficiency.  Meals are planned way ahead of time, recipes researched, preschoolers duped into eating healthy things (sometimes).  Dogs are walked, fed, cared for.  Fiances are well fed, well dressed, well-loved.

So sometimes I feel like I’m conducting like this:

Good days

Like today! I coordinated a new housekeeper, discussed winter and spring plans with my gardener, met with a sprinkler inspection, dropped off 12 pumpkins, 12 trick or treat buckets, and 12 glow sticks for a preschool project, and managed to get some shopping done!  Boom baby!

Other days tend to go like this: they start out well but somehow slip out of control and you’re just happy to be at one piece at the end!

Here’s hoping we have more well conducted days than days like Merlin!

 

Sickness

Nothing quite says back to school like getting sick.  For whatever reason, Connor seems especially susceptible to the various germs flying rapidly around the preschool.  I’ve been told that preschool is the worst because it’s their first time in school, surrounded by other children, essentially changing the classroom into a cesspool.

And I don’t know about any other mothers out there but I feel especially guilty (I saw especially because I seem to have a pretty consistent level of guilt running through me at all times) when the school nurse calls me to pick Connor up from school.  This has happened three or four times since he entered school last April.  The call always starts with whatever is wrong with Connor, which immediately terrifies me, and then manages to somehow imply that perhaps this illness/rash/horrible diarrhea was happening before I sent Connor to school that morning.  I am then racked by self-doubt.  WAS IT??  Did I simply miss the signs????  Or even worse, did I ignore them????  AM I THE WORLD’S WORST MOTHER?!?!

(Granted Connor’s autism makes it impossible for him to tell me if he’s feeling sick, but that never factors into my guilt level.)

I always end up driving like a bat out of hell to get to school, plagued by the belief that I purposefully sent my sick child to school and therefore imparted a miserable day on everyone involved with him.  I curse any red lights or pedestrians that get in my way! I silently stew over the injustice of traffic laws!  I wonder if the nurse is timing me in my trip to school…Am I being judged on the amount of time that passes between phone call and pick up?  And before you say anything, just because it’s paranoid, doesn’t mean it isn’t true.

I usually jog across the parking lot, trying not to look like the hot mess that I feel.  Bursting into the office, the school secretary has to remind me every single time to sign Connor out of school.  Every time!  I’m sure this makes me look even crazier.  The signing in process is also time stamped, just one more reminder that it took me eons to get there.

By the time I get back to the nurses office, I’m frantic.  But every time I find him there, Connor is sitting placidly in a tiny blue chair, playing with trains, and waiting for me.  Sweeping him up into my arms, the nurse begins to tell me what is wrong, what happened, etc.  I usually only hear about a third of what she says as I’m too busy looking over my boy to pay attention.  I nod me head, mutter uh huh a couple of times, and make a bee line for the door.

My raging guilt provides Connor with whatever entertainment he desires.  My poor child is sick and I, his monstrous mother, forced him to go to school.  I’ll make it up to him with endless episodes of My Little Pony and popsicles.

The aftermath of these sick from school days is always a lingering self-doubt.  He seems fine, do I send him to school?  Am I capable of judging at this point?  To assuage my guilt-doubt combo and please my little boy, I keep him home.  Sure, he’s tired and cranky, and maybe there are some lingering symptoms, or maybe they’re all in my head.  I just don’t know.  I JUST DON’T KNOW!!!

At this point if the fiance hadn’t stepped in and announced that Connor needed to go back to school, I think I may have just kept him home indefinitely.  Finally someone with a clear head and an even emotional keel made a decision.  I was only too happy to abide by it.

And wouldn’t you know it, when I dropped Connor off at school this morning, there were no tears, no whining, no trembling lip.  He simply walked up to his classroom aid, took her hand, and waved goodbye.

I’m pretty sure that if motherhood doesn’t drive my crazy in the next few years, nothing ever will.

Turning a Corner

Connor seems to have turned a corner in his life.  Or perhaps we’ve turned a corner in OUR lives.

After constantly battling my son over nearly everything since he was old enough to move on his own, I find myself with a mostly compliant child.  I ask him to clean up his messes and he does.  I ask him to sit in his seat, and he does.  I ask him to stay inside and he does!  Sometimes he even does things without me asking, like cleaning up spills, or getting in bed.  And honestly it freaks me out!

Where has my angry, defiant child gone?

Connor happily leaves me to accompany the various adults that rule his life: teachers, coaches, therapists, instructors.  He suddenly loves them all!

Obviously Connor is still a 3-year-old pain in the butt, sometimes.  He still wants his own way, on his own terms, in his own time.  He still wants to sleep in.  He still torments the dogs by pulling their tails.  He refuses fruits in favor of bread.  He loves Cars 2 to the point of obsession.  And though I’ve never been the parent to an average child, I feel like this is pretty average behavior for a precocious preschooler.  (Yes?  No?)

Sure Connor still tantrums in public.  Sure he threw my tomato plant into the hydrangea just yesterday.  And yes, sure he’s resisting potty training with all his might.  But if taken in the context of an average childhood, instead of an autistic childhood, I feel like I could safely label my son as a stinker, rather than worrying about whether each incident indicated some underlying behavioral issue.

We are absolutely a long way from mainstreaming.  We have miles to go on the communication issues, eye contact, and peer interaction. We have setbacks.  We have days of bad behavior.  We have regression when Connor is sick or extremely tired.  We have power struggles and I still want to pull my hair out nearly every day (but what mother of a preschooler doesn’t?).  We still have challenges ahead.

But it makes my heart glad to see the progress we’ve made.  And I can confidently say that for the first time in his short life, I have a happy child.

Care Packages

If raising a child with autism is a war, then all the support I received from friends and family yesterday felt like letters from home.  Though they can never completely remove me from the situation, they can lessen the stress with every kind word.

A couple of comments and texts I received yesterday got me wondering about other parents of autistic children and their struggles.  According to the brief research I did, we are a subject group of considerable interest to researchers.  I came across several scholarly articles discussing the stress levels among parents of autistic children as being significantly higher than those of parents of “average” children. Many of these articles offer an analysis and advice of family, therapeutic and parent intervention.

There are also several support groups online and nonprofit groups that deal with the parents of autistic children specifically, offering them advice on how to cope with the stress and better ways of communicating with their children.

Perhaps I’m alone in this but when I read these support groups websites and all these articles, it just makes me feel worse.  I am giving all I can give on a regular basis.  Many of these sites offer advice on how to do things “better” which means I’m doing something incorrectly, which then spins me into a guilt tornado.  Ugh.  No thanks.

I prefer the care packages I receive from friends and loved ones.  I prefer the simple words of kindness and encouragement.  It’s nice to hear from other parents dealing with similar issues, or have dealt with similar issues, or parents of normally developed children whose kids do something infuriating!

If you’re unsure how to support me (or any parent of an autistic child) here is a nice article I found that offers a thoughtful discussion of what to say, how to say, and what questions to ask.  I know many of us, myself included, often worry about saying the wrong thing.  When you’re talking about someone’s kid, that worry can build to the point that you don’t want to say anything.

What to Say to Parents of Children with Autism by Jean Winegardner at the Washington Times.

Parenting a child with autism can be incredibly isolating for many reasons.

It’s difficult to take Connor out to public places for fear of how he’ll behave.  He may tantrum, shove other children, run away from me, monopolize toys/books/games, etc.  Or he might simply scream the whole time.  We were at Disneyland just a couple of weeks ago and while he had fun for the first hour, he slowly lost the ability to control his emotions and began to tantrum at the drop of a hat.  Every rule we’d worked on, every communication we’d developed, every peer interaction we’d practiced, went right out the window.  He hit me, pushed two unknown children, ran into an employee only area, tantrumed the entire time we were on the train.  Good times. But there are other times we’ve been there when he didn’t cry at all, interacted appropriately, waited his turn, etc.  It’s a very dangerous guessing game to play as to which behavior you’re going to get.  And as the parent you need to be prepared for the worst.  And you need to be prepared to leave any place, at any time, without any notice.

Sometimes that’s just all too much.  Sometimes I prefer to take him to a park that I know will be empty.  Or we’ll go for a walk on the vast wetlands with no one else around.  And sometimes even that is too much, and we’ll just stay home. When we have days like the past few days, I feel like a prisoner (or maybe the warden) in my own home.  This is Connor’s comfort zone.  Honestly, this is my comfort zone as well.  There is nothing that can happen at home that I am not prepared for.  We can be in the same room, interacting, or we can not.  Either way is fine.

So when I get your text, your email, your comment, it’s like a lifeline to the outside world that I’m not quite so alone as I feel sometimes.  Thank you for reminding me that I have friends, family, kind strangers, who care enough to share a moment of life.  Thank you for keeping me company if only for a minute.  Thank you.

And because I’m a woman who likes nice things, when I got an email from Coach yesterday offering me 25% off my purchase, I knew it was a sign from God that he wanted me to have something nice.  So thank you Lord.  I can’t wait for my care package from Coach!

If I’m going to have a child that drives me crazy, I’m at least going to look good on my road to insanity.

Grenade

Being a parent of an autistic child is something akin to juggling live grenades.

At first you’re dropping them all over the place.  Explosions keep knocking you off your feet.  Your head hurts from the constant thrashing, banging, and the deafening sounds.  You feel scarred, and scared, unsure of yourself and this whole operation.

Yet, you persevere.  You get back on your feet, shake the ringing from your ears and begin again.

Of course you’ll drop grenades occasionally, but you’re getting better.  You’re managing to go days without an explosion.  Perhaps you even get to the point where you say to yourself, “Hey! I’m getting the hang of this!  I haven’t dropped a grenade in weeks.”

You give yourself a mental pat on the back.

And then when the next grenade hits your hand, it explodes.

There’s no rational reason for this.  There’s nothing you did.  Nothing has changed.

But there is carnage none the less.  Screams fill the air and you’re unsure who they belong to, you or the child.  There is crying, there is blood, there is trauma. And the rest of the grenades fall from the air as you try to stop the bleeding.

And you did nothing wrong.

This has been my last 36 hours.

Connor woke up yesterday just ready to pull the pin.  He was angry, defiant, destructive.  Everything was a battle, from changing his diaper to getting his shoes on to feeding him.  All of which failed.

He refused to let me put a new diaper on, kicking me and screaming for what seemed like hours but was really only a matter of minutes.  Feeling sorry for my obviously unhappy child, I let him go naked.  Later in the day, when I actually managed to clothe him briefly, I should have known that shoes were not going to happen.  All I got for my trouble was a kick the head and a lot of tears.  Food was equally ridiculous.  He refused to eat a hot waffle, screaming at me when I cut it and poured syrup on.  He wanted a frozen waffle, which I gave him, which he promptly placed next to his hot waffle and then ate said hot waffle.

All of which is happening without words.  Connor refused to communicate in any way other than screaming, physical violence, and gesturing.

I gave him a mental health day.  Taking him to preschool in that condition would have been the equivalent of taking one of my dogs to preschool.  The teachers might have actually gotten more obedience from Penny than they would have from Connor.

I figured I’d be a nice mom and just give the kid a break.  Adults need days off, why not kids too?

I let him be naked, eat goldfish, watch Sesame Street.  I took him swimming at my mom’s.  I gave him ice cream after he was such a sweet boy for his Nana.

Yet as soon as we got home, grenades began to fall from the sky again.

I was beginning to feel shell-shocked.

So when he fell asleep at 8, I was relieved; when he woke up at 8:40 and stayed up until midnight, I was unsurprised.  I had hoped that a night’s sleep was all he needed, that a day at home was all he needed to set him back to right.  I had hoped I could hold the grenades in the air today.

Connor treated me to exactly the same type of morning as yesterday morning.

There is only so many times a person can be kicked, hit, and scratched before something inside them snaps. As he lay on the ground screaming, kicking, crying out for me to stop trying to dress him, I lost it. I have never been so abused in my life than I am at the hands of my child.  I flipped him over and spanked him once on his bottom.  The only thing it made him do was cry harder.

I yelled, the dogs cowered, and Connor yelled back.

I pinned him to the floor face down, using my body weight as leverage, to force pants, socks, and shoes on him.

I held him down in this booster seat and buckled him in for a breakfast he wouldn’t eat.

I moved his chair against the wall when he tried to flip it over with his frantic kicking.

I placed cereal and juice in front of him despite the fact that I knew he wouldn’t touch either.

I went about starting the  day, all the while we both cried.

At last he quieted and I sat across from him.  I asked if he was all done.  He repeated all done.  As I unbuckled his belt, he leapt from the seat into my lap, wrapping his arms around my neck and whimpering.

Now he’s at school, after crying pathetically for me not to leave him there.  And now I’m at home, crying pathetically over the guilt I feel for one spank, for yelling, for holding him down to dress him, for screaming at him to stop, just to stop!!

I just want the grenades to stop falling.

This is what parenting my autistic child is: juggling grenades and then feeling guilty for taking cover when they begin to fall.