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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

 

Summertime Schedule

Ah, summer! A time for fun! A time for relaxing! A time for chaos!

When you are autistic, the unorganized, seemingly endless days of summer can appear as a nightmare!  Sure, the first few days of sleeping in are great.  Then the trips to the beach, the park, the theme parks all seem nice on the outside, but something deep inside starts to go a little haywire.  By the two-week mark, circuits are as fried as all the yummy summer food you’ve been eating!

Or at least that’s how life appears to be for my son.

Connor fights school.  He whines about the appointments.  He complains about having to do all the non-recreational stuff he has to do for his ASD diagnosis.  “No school today!” is a common refrain at our house in the mornings.  He usually follows it up with “maybe tomorrow”, as if he’ll be more prepared by then to buckle down.

What he may not consciously realize is that every time we have a prolonged break from school (and thus a break from routine), his world starts to spin out of control.

There are too many options, too many fun things to choose from that he eventually suffers from choice paralysis.  When his days are structured and ordered, we have a clear, limited number of choices because our “free choice” time is limited.

To a child this may sound like torture! Only having an hour or two of free time each day! During the summer!!! This woman is a fascist!  But for the child with autism, the structured day is the mental equivalent of eating your vegetables.  You may not always like them, and I can dress them up to taste better, but they will in the long run make you healthier and stronger.

Since school let out two weeks ago, I’ve watched my son’s behavior slowly devolve from happy, compliant and self-contained to needy, angry, and defiant!  Tantrums went from 1 or 2 every other day to 2 to 3 every day.  Time outs tripled.  Bad behavior, we had happily curtailed, reemerged.  Anger was always near the surface.  Hitting, kicking, throwing things, all behaviors we had worked on diligently for the past year and had successfully disappeared from his repertoire began to take shape again.  Perhaps worst of all, his language began to disappear.  Words were replaced by screams and grunts.

The de-evolution culminated on Saturday when we were driving home from my sister’s house.  Connor was in the back pretending to be The Amazing Mumford.  When I chimed in with his magic words “A la peanut butter sandwiches” something in Connor snapped.  He took his seatbelt off and lunged at me.  Thankfully we were close to home but for those few minutes in the car there was a violent struggle as I tried to fend of the little demon that had replaced my child and drive at the same time.

That night I cried, Connor cried.  I drank wine while Connor drank juice and was put to bed by my husband.

The next day my precious child had no recollection of the event, but I still felt scarred by it.  I avoided him all day, leaving the parenting to my husband.  I busied myself with groceries, cooking, gardening.  That night we left Connor with my parents so I could have time out of the house and away from my child.

By the time I returned I felt better, more centered and ready to face the daily struggles of parenting an autistic child.  When I picked up my son, he was so happy to see me, so happy to hug me and kiss me; I wondered at the seemingly dramatic change in him.

But when summer school began Monday morning, and we began our routine, my happy child reemerged.  Sure, he didn’t want to go to school that morning, but by the time I picked him up, he was happy, compliant, and eager to get on with his schedule.

While all children benefit from consistency, children with autism seem to need it to function.  And though Connor enjoyed his first few days of freedom, I have a feeling, he’s secretly happy to be back in school

If you’re interested, here is some more information on why consistent schedules are important for both typical developing children and for ASD children:

Autistic Children Need a Consistent Schedule

Norrin’s Story of Schedules

The Importance of Schedules

Ready, Set, Routine!

Chores and Procrastination

Well my wedding is less than two weeks away now and there is a list a mile long of things that still need to be done.  I am, of course, not doing them.

The thing about getting married for the second time is that it is a lot more difficult to plan, prepare, complete the millions of tasks when you have a child.  Though there are many supposed moral reasons why people should wait to have kids until after marriage, I think the real reason is that it’s damn hard to get anything done when you have kids!

Seriously!  I can barely get the dishes done on daily basis because of Connor!

So when Connor was sick for three weeks straight and missed 10 days of school, my wedding planning got derailed.  Thankfully I have my faithful minions (aka my family and friends) who are kindly helping in whatever capacity they can.  Or that I will let them.  (I do feel strangely reluctant to burden anyone with work when I know how impossible it is to get things done with little ones clinging to you as you try to move the wet clothes from the washing machine to the dryer…or maybe that’s just my house?)

Now that Connor is back at school I should be tackling the dozen or so items left to get done in the next 10 days.

Instead, I’ve spent my morning researching and creating a picture chore chart for Connor.  Yay!…?

The other thing about getting married for the second time is that you don’t get to stop being a parent, your child still needs all of your attention (and your special needs child needs all of your attention and then some).  Since I’ve set the tentative goal of mainstreaming Connor one or two days per week for next fall, we are really focusing on doing whatever we can to prepare him for a mainstream preschool classroom.  That means he’s socializing more with typical developing peers, we’re making him use more and more of his language at home, and we’re trying to create an environment of responsibility.  Part of that means Connor has to complete certain tasks each day (mostly without complaining).

To get him used to the idea of responsibility and having to do things he doesn’t necessarily enjoy, we instituted a chore chart.  I made a worksheet of chores with bubbles next to it to be checked off.  And while Connor enjoyed getting check marks, it didn’t really appear to be making an impact.  So I’m taking another approach.

Choice boards worked really well for us in the past when we were developing Connor’s language skills.  He was able to look at the pictures and either point or pick them up to communicate his needs, while still focusing on developing the words these pictures represented.  I’m hoping that using a pictorial chore chart will have a similar effect.

With a little research I was able to find these from Over the Big Moon:

Picture Chore Charts for Preschoolers

The author provides blank versions so you can add your own clipart/images and text.  Obviously I’m not going to have Connor read 15 minutes every day (since he can’t sit still for 15 minutes) but I am going to have him brush his teeth!

To customize your own charts visit here: http://www.overthebigmoon.com/pre-k-chore-charts-free-printable/

I’ll post an update once I get the charts on the wall and we can see how Connor is progressing!

Until then, I guess I’ll get to some wedding chores before my actual wedding is here…maybe.

 

Not taking no for an answer

I really don’t like being told no.  I mean nobody does, but I really really hate it.  It makes me want whatever I’m requesting even more!

Can I eat all my trick or treat candy? No.  Oh yeah?  Well I’m going to eat as much Halloween candy as possible before I even get home!

Can I go on that spring break trip to Mexico? No.  Well fine! I’m just going to Havasu instead!

Can I finish my finals and term papers for my masters while on bed-rest at 8 mos pregnant? No. Wanna bet? Just watch me! Done!

So when I spoke to someone today about moving Connor from his special education preschool into a mainstream preschool just two days a week next fall, I didn’t like hearing them say no.  It mad me mad.  I mean it mad me really really mad.  Like I wanted to pull all the research out of my pocket and show them how great mainstream education is for high functioning autistic children.  (I didn’t actually have it in my pocket so that’s kinda why I’m blogging at 11 pm on a Monday.  I’m writing, taking notes, and researching.  And I’m really good at research, like it’s kinda my superpower.  I now have enough sources to write an academic paper on the subject.  Booyah.)

Telling me that my son can’t do something, telling me that he is limited, that he may get lost in that setting, pushed all the wrong buttons.

Sure Connor isn’t ready at this very moment to be in a mainstream preschool class.  The biggest obstacle is his speech delay.  In the past six months we have seen Connor’s speech improve tremendously, breathtakingly! But he’s still not at a level of typical development for a three-year old.  And that’s ok.  It’s a process that may take years to fully catch him up.  I’m willing to wait.

What I’m not willing to do is sit on the sidelines to wait.  I’m going to push him.  I’m going to put Connor into environments that drive him to increase his communication.  Existing solely in a world of special education, Connor is never going to be pushed to exceed those around him.  He will not be asked to stretch beyond the goals set forth for him that year by adults.  And as much effect as adult interactions can have, kids want to interact with kids.  Playing and talking and having fun with another child can be the greatest motivator to grow.

A recent study in particular (in Norway) found that children with autism who interacted with their typical developing peers in a mainstream preschool setting saw a significant increase in their IQ over two years. A second study published by Autism in 2011 found that 31 % of the autistic students observed, who interacted with their typical developing peers, saw such a significant increase after just 8 months as to qualify them as typical developing.

These studies with these types of returns convince me even more that Connor needs to be pushed into a classroom with typical developing peers.  Maybe not now, maybe not tomorrow, but soon.  He may not see the same significant increases in IQ or developmental abilities, but I think any increase is worth the risk.

And I’m not taking no for an answer.

Autism and Sandy Hook

Like many Americans in the aftermath of the Sandy Hook Elementary shooting, I’ve been looking for answers. Initially I was eager for any kind of explanation.  I wanted the shooter to have something wrong with him, something off, something I could point at and say “Ah ha! That explains it!”  But as time passed, the truth sunk in.  There is never going to be an explanation sufficient to explain away such a wanton loss of life.

In the days since the shooting many writers, reporters, and broadcasters have thrown around the idea that the shooter had some form of autism and that may be at least in part to blame for his actions.  Theories ranged from “Friends of the family said he suffered from Asperger’s syndrome, a form of autism” to headlines that read “…shooter, may have had form of autism“, as if this explained everything or anything.  Thankfully, since similar theories were espoused in the aftermath of the Denver theater shooting, many parents, professionals, and even some writers themselves were ready to come out to say that these theories of autism have no relationship to the shooting at Sandy Hook.

From a Yahoo news article that explores the many topics Americans are placing the blame on:
“People want immediate or simple answers when an unimaginable tragedy like this occurs,” Bob and Suzanne Write of Autism Speaks said in a statement on Monday. “Autism did not cause this horror. The profound tragedy of these senseless murders will only be compounded if it results in unwarranted discrimination against people with autism.”

But where does that leave us?  Autism Speaks and parents like myself are forced to come out with statements like this every time something tragically violent occurs at the hands of a disturbed citizen.

The shooter was odd, friendless and awkward.  He may have had a form of autism.  His home was filled with weapons capable of mass murder.  He had trouble in school.  His parents were divorced.  He was very smart.

None of these facts alone will ever explain why this tragedy occurred.  I’m not convinced that these facts combined can explain the tragedy either.

One thing that does not explain this violence or violence like it in Oregon, Colorado, Virginia, California, or any of the other sites of tragic mass murders, is autism.  Autism is not the enemy.  And we need to do a better job of educating the public about this disorder.

Let me begin here, today.

Autism is a disorder that makes life more difficult for the child and their families.  Connor is three and a half years old.  My son lacks the ability to self-calm, to self-regulate, or differentiate between needs and wants.  His language development is at least one year delayed.  His emotional development is also at least one year delayed.  He can be violent.  He pushes or shoves when he is angry or frustrated.  He cannot be reasoned with when angry.

Connor is also capable of both intense joy and sadness.  If he hears our dogs whimper, he asks them if they are ok.  He engages with other children on the playground but cannot communicate.  He longs to play baseball.  He watches the same movies over and over again.  He loves trains, trucks, and playing in the dirt.  My son loves making art and snuggling on the couch.  He cries if we wait in line for more than five minutes.  He will throw a tantrum in the middle of the grocery store because I didn’t get the right kind of bread.  He helps me unload the washer and dryer.  He puts his clothes in the hamper when directed.  He plays too rough with the dogs.  He ends up in time out at least once a day.  He tries to convince me he should have ice cream for dinner and cookies for breakfast.  He wants to go to the beach every day.

Connor is all these things and many more.  He is autistic.  He also a typical little boy in many ways.

Autism is not the enemy.

Please visit Autism Speaks for more information about Autism Spectrum Disorder and how you can help.

 

 

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.

Bad Day Made Better

Last night was yet another night of nightmares, anxiety outpourings, and early morning wakeups.  Since returning from vacation Connor has been plagued by bad dreams.  Though he can’t communicate to me what these dreams are about, the fact that he clings to me, crying, whimpering my name clearly communicates that these dreams focus on my leaving him again.  It breaks my heart.

So this morning is not going well.  I’m exhausted.  I have a headache.  I’m downing enough caffeinated beverages to replace my blood stream.

But there is no amount of Tylenol and Diet Coke that can help me be the mommy I need to be.  I just have to muscle through and keep my unraveling patience in check.

To make this bad day better I’m taking a little me time, just a little.  In between doing the dishes, folding laundry, replacing burned out lightbulbs (which is oddly one of my least favorite chores, I don’t know why, but I really hate it), and various other household tasks, I’m taking a few minutes to sort myself out.

Here are my top three treats for today:

 

I ordered this dress on sale about a week ago and it came today.  Yay!  It’s a little dressy for running errands, picking up Connor from preschool, and sitting through therapy, but it makes me happy.

I bought the new Jason Aldean record.  It literally came out today.  It’s a little predictable, a little run-of the mill, but it’s familiar like slipping on an old sweatshirt.  I’ve been listening to it on repeat.  Country music makes me smile.

I booked a ticket to Chicago to see my little baby nephew, Baby N!  And because I had a voucher from American for screwing up my vacation, I could afford to book my return flight in first class.  FIRST CLASS!!  Oh yeah!

Well, my alone time is almost done now, so I’m off to get my baby boy and enter the whirlwind of preschool emotions.  But I already feel better.  And I know we’ll survive today.