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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

 

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.

Choices

Connor struggles with choices. For many of us it can be difficult to decide which car to purchase, or whether to accept the terms of a new contract.  We can vacillate over whether to wear the blue shirt or the red sweater, whether to get the chicken or the steak, whether we really want that third glass of wine (we do).  On some days it might be a challenge to just decide what we want for breakfast!

Now imagine that every decision of every day was that difficult.  It would be easy to fall into a pattern of eating the same thing, watching the same videos, wearing the same shoes everyday to avoid making any decisions.  You could feel confident about your life because you knew what the day was going to bring: the same thing it brought yesterday.

The other obstacle Connor faces in making new choices is that he struggles to communicate that new choice.  With his limited vocabulary it is much easier to say “goldfish”, which he’s said a thousand times before, than it is to learn a new word and then have to call it up on command to label your new choice.

To get Connor away from his rut, and to aid him in his communication, I made him a choice board.  A choice board is a visual display off all choices available, usually with written labels of the picture.

To get him comfortable with the idea of using the choice board to communicate, I decided to start off with food choices.  Connor only eats a limited number of items, nearly all toddler/preschool favorites, to be found on any kids menu in the country.

Despite the fact that there were only a few items to choose from, Connor still struggled to communicate what he wanted on a given day.  I would literally have to go through the list of food and ask him if he wanted each item.

“Do you want pizza? No

“Do you want chicken? No”

“Do you want a hot dog? No mommy!!”

“Do you want a grilled cheese? WAAAAAAAAAAAAAHHHHHHH!!!!”

Not fun.

Connor definitely had a limit on the number of questions you could ask him before falling apart.  I can’t imagine how frustrating it is to know what you want and be unable to communicate that.

The choice board has been a pleasant change.

Initially Connor didn’t want to use the choice board.  He tore it all down…twice.

But after allowing him to pick anything he wanted from the board and get it, the choice board has produced positive results.  This is a typical conditioning technique.  The positive reinforcement ties the child to the exercise, building good feelings towards the outcome of the choice board, allowing for more rules to be inserted later, as the child grows accustomed to the board.  So yes, this meant that I made biscuits every morning four mornings in a row, and yes, Connor got ice cream for dinner one night.  But here we are, two weeks later, and if Connor is struggling to communicate something, he happily goes to the choice board.

I used Google Images to find icons of familiar and preferred items.  I then printed them out and laminated them.  So yeah, I got to use my laminator!  And then I got to use my label maker!!  (It was a pretty awesome day.)

Initially the idea was that Connor would choose what he wanted for each meal and place the icon there.  Yeah….so that didn’t work.  For now, I have reorganized all the food under each meal and Connor simply needs to point to the item he wants.  I then require him to state out loud “I want _______”.  It’s been a process, but it’s working.

We’ll see if it lasts!  If it does, we’ll use a choice board for activities.  Perhaps I’ll even get Connor to help me plan his food for lunch!

One day at a time!

If you’d like to build your own choice board, here is a great link from Hands in Autism:

www.handsinautism.org/pdf/How_To_Choice_Boards.pdf

This is a pdf document that provides instructions as well as sample icons to use on your choice board.

As always, if you have any questions or suggestions, I’d love to talk about it!

An Abbreviated Break

Or perhaps the title should be “Connor gets jipped.”

Connor’s school schedule has been a little off since the beginning.  As a special education candidate he started preschool just after he turned three, when the school district is legally required to assume responsibility for his education and the majority of his therapy.  One of the greatest blessings in our life has been the early intervention programs Connor has been a part of, first through the Regional Center of Orange County and now through Ocean View School District.  We were lucky enough to live in an area where government programs for the disabled were still nearly fully funded while the rest of the state (and the country, for that matter) struggles to find funds for special education programs, such as early intervention.  But because budgets are such a delicate balancing act, each program is eager to hand over participants to the next program.  Thus Connor started preschool in April, instead of following the traditional school year and entering in the fall.

We had about two and a half months of school, during which Connor was sick probably half a dozen times and missed close to ten days in that time (this is the reality of entering school—your immune systems get tested more than your student!).  By the end of that two and half month period Connor was adjusting to going to class everyday.  He wasn’t even crying most day when I dropped him off.  He’d managed to steel himself for the prospect of separation every day.  In short, Connor had nearly adjusted to preschool.

And then school ended.

The school year officially ended last Wednesday, not to pick back up until September….

Thank God for summer school!

Poor Connor.  If he only knew that he was being forced to attend school while the rest of the county’s students enjoy three blissful months of no class, no work, no teachers.  He would be extremely upset if he knew.  Connor loves all those days of no demands or responsibility!

Thankfully he is not yet cognizant of how the world works!

Because change is such a struggle for Connor, his special education plan ensures that he attends school throughout the summer.  It is also imperative to the early intervention model that Connor receive continuous services until he reaches his communicative and behavioral goals.  What that means is Connor will receive almost constant schooling and therapy until he reaches the level of average kids his age.  Poor Connor gets no summer break.

To make up for the fact that Connor is being deprived of an entire of summer of doing nothing, I wanted to make his five-day summer break great.

So we went to the aquarium, we saw half of a movie in a theater (which I guess is good enough for Connor, because who needs to see the end of a movie really?  It’s all about the set-up!), we went to the park, we swam, we rode bikes, we got a cold.

Ok, so that last one wasn’t on the to-do list.  But we did get a bad cold/flu.  Connor rebounded pretty fast, but I was bed-ridden for 2 of the 5 days.  Not how I wanted to spend “summer break” but hey I don’t have to go back to school today (he he).

We did get to spend one awesome afternoon at the aquarium.  The Long Beach Aquarium, The Aquarium of the Pacific,  might be Connor’s most favorite place in the whole world (outside of my arms of course).  The Aquarium has it’s own icon for Connor’s calendar, so he regularly goes to the calendar, grabs the card, and asks to see “fishies? fishies?”.  So even though we only had a five-day summer break, we had one perfect afternoon.

Connor is fascinated by fish.

As usual, Connor is surrounded by women…and oblivious to them.

“CHEESE!”

Perfect

To Swim

I’ll keep it short and sweet today.  I’ve finally come up with a plan for Connor’s summer swim lessons: two sessions of private instruction followed by two sessions of preschool group class (to be modified as needed).

Why did it take me so long to come up with this seemingly simple plan?

Because I’m a worrier.

Because I’m conflicted as to whether personal instruction or group interaction would be best for my somewhat challenging child.

Because my cousins have put their children in the Mommy and Me class and I want to be with them but Connor is too old!

Because I also procrastinate.

But now I have a plan!  Or at least a very loose semblance of a plan.

We’ll be going to Golden West College for our swim lessons.

It’s were I learned to swim, where my sisters learned to swim, where my cousins learned to swim.  It’s only makes sense that the new generation would return there for their own swim lessons.  It makes me feel a bit old taking my own child there, but I have such happy memories of my time there that I’m willing to bear a constant reminder of my age to have Connor make his own happy memories there.

I’m excited just thinking about it!

As a child it was one of my favorite things about summer!  I practically lived in the water during school vacations.  There is something so freeing about swimming that even as an adult I love to do it.

Actually, it brings out the kid in me.  I want to start doing hand stands in the shallow end, to play Marco Polo, to race underwater.

I’m pretty confident that Connor has the same love for water.  Yesterday at my mom’s Connor displayed his already intense love for swimming, but floating in a swim ring and kicking across a tiny spa for several hours.  He was as happy as a fish in water (hehe)!  Seriously though, I kept waiting for the joy of the experience to diminish over time but Connor was as happy at hour two as he was at minute five!

Hopefully this love of swimming will translate into swimming lessons given to him by a stranger.  I’m hopeful that the joy of water will over-ride the hesitancy of interacting with a person he doesn’t know.

We’ll see though, nothing to do but try!

If you’re in the North Orange County area, I highly recommend the Golden West College swim lessons program.  They have many instructors who have worked with special needs children before, and as a group are very conscious and considerate of interacting with the special needs community.  Hurry, though!  Space is filling up fast and it’s a pretty inexpensive program ($50 per class session) so there few remaining spaces are sure to be filled any day.

Video Talk

One of Connor’s greatest joys in life is watching videos.  Lately he has literally been waking up and immediately requesting a specific movie (over the holiday weekend that movie was Ponyo).  Connor takes joy in picking out the videos, lining up all the video cases or discs so he could clearly see all of his options.

The majority of his choices consist of various Pixar movies, but we throw in some Disney and DreamWorks Animation for good measure.

This is what Connor did this morning when he got up.  You can see from the picture that he constructed a very clear layout in which he could view everything.  The fact that he lined these videos up in this way is just one example of his autism.  For some reason, children with ASD enjoy lining things up or “ordering” things.  Connor does this often with books or videos or his toys.  At other times he is happy to leave things in chaos.  There doesn’t seem to be any rhyme or reason to it.

However, Connor’s autism stands out most sharply when videos or movies are involved.  One of his biggest developmental stumbling blocks is that his speech has been slow to develop.

Initially Connor seemed to be on track with other kids his age.  His first word was “Hi” just before he turned one.  He started collecting more words over the following year, but by age two he’d stagnated at about 20 words.  Connor also seemed confused over how to communicate with me.  He often flew into rages and tantrums because he was so frustrated that I didn’t know what he wanted or needed.  It was like some horrific game of 20 questions.

Once we got into therapy, though, things began to turn around….slowly.

Connor began to acquire more words and eventually understood how to communicate his needs.  Finally by January of this year we had mastered small phrases.  By the time he turned 3 Connor was using phrases and short sentences, even occasionally using reflective pronouns.  He’d say “I jump!” or “I dance”. The first time he said that I wanted to cry.  I swept him up in a big hug and covered his face with kisses.  Connor probably thought I was insane but he seemed happy enough that he continued dancing when I put him down.

The therapists and I continued to work with him on stating his needs or wants in sentence form.  We encourage him to say things like “I want ________ please” or heck, I’m happy with “I want _________”.

The one thing that has stuck with Connor in all of this therapy is “please” and “thank you”, although people are so delighted by how polite he is that he often gets away with using only phrases ending in “please” rather than being forced to say an entire sentence.

Throughout all of this Connor has been engaging in “video talk”, otherwise known as echolalia (which means to echo back).  He watches movies or YouTube videos over and over until he’s memorized certain phrases. He would repeat phrases over and over to himself, as if replaying a piece of the movie on his own. Initially I wanted to discourage this behavior, thinking that this type of speech would only slow his development down.

But then something interesting happened.

In the movie Up (one of Connor’s favorites) the character Russel asks the giant bird, whom he has named Kevin, if he is ok after their floating house bumped into a tree (I know this sounds bizarre but it makes sense if you see the movie, which I recommend you do). Russel says “Are you ok, Kevin?”

This simple question became one of Connor’s favorite phrases to repeat.  As with most of his echolalia, I’d gotten used to ignoring it.  At least I did until Connor asked me “You ok, Mom?”

“What, baby?”

Connor looked at me blank faced and repeated the question, “You ok, Mom?”

“Yes, baby, I’m good.  Thanks.  Are you ok?”

He didn’t answer but Connor seemed pleased with this response.  He smiled and then asked each of the dogs if they were ok.  They didn’t respond of course but that didn’t seem to bother Connor since he doesn’t place a high priority on language.

Like many articles I’d read about echolalia suggested, Connor was using the memorized phrases to create meaningful language.

It’s as if he is a little anthropologist studying our society and culture through vidoes, trying to make sense of our complicated language.  It’s bizarre sometimes but he’s learned a lot about feelings from watching videos of babies on YouTube.  He’ll see a baby cry and say “oooooh poor baby” or when a child laughs at a piece of paper ripping Connor laughs as well.  He’ll usually look to me to see if this is the appropriate response to what is happening.  If it is correct I’ll mimic him or if it isn’t I’ll display the appropriate emotion.

We seem to be making progress.

One day we’ll get to a point when Connor won’t use video talk to communicate or learn language, but right now it seems to be an invaluable tool.  Think of those stories you’ve heard of immigrants learning English by watching soap operas.  Some of their initial speech may contain words or phrases not ordinarily used in everyday language, but that fades away after a time.

For Connor he is learning language in exactly the same way.  He needs a means of communicating.  He has a hard time learning language from people around him.  The visual nature of movies and videos allows him to internalize the language and slowly adapt it to his life.

It must be a frustrating and arduous process for Connor to learn this way.

There are things I can do to help.

1) Be patient.

Speaking is incredibly frustrating for Connor.  The best thing I can do is to wait for him to express his language without rushing or prompting or losing my patience.  Eventually he’ll say it.  I might have to ask him five times and wait a full minute before he responds, but he will eventually respond.

2) Use his echolalia to my advantage.

If I ask him if he wants to go to the park and he responds “to the park” I know that he means yes and I know that he has all the appropriate words.  Instead of just accepting that as the answer, I prompt him to respond appropriately: “Say park please” or “Say I want park” or even “Say yes please”.  These instructions have been getting a lot of traction lately and Connor is able to answer questions more readily by having these memorized phrases available.  We’re finally getting a lot of “Yes please” and “No thank you”!  Also I can teach him new words everyday knowing that he’ll repeat me!

3) Remind him to use his words.

When your child is crying and upset it’s very easy to comfort him and remove whatever the problem is.  For Connor if he doesn’t want to do something his first reaction is screaming and/or crying.  This is not acceptable in the long-term.  It takes every ounce of my will power not to hug and kiss his tears away.  I force myself instead to stare at him placidly and remind him “use your words please”.  If that doesn’t do it, I know that he wants to say no so I prompt him saying, “Connor, say no thank you.” This usually gets an immediate response.  It offers him a way out.  “NO thank you!” he’ll shout, which is oh so pleasant, but at least it’s something.  Thankfully this message has been getting through to him so this weekend when he was extremely distressed about having to wear swim trunks to go swimming he repeated “No swimming, no thank you. No swimming, no thank you” until we got out of the water.  Sigh.  At least he’s communicating!

4) Don’t accept silence as an answer.

Seriously.  I believe that echolalia is better than silence.  It’s not a perfect solution, but it’s better than nothing.  I don’t want Connor to think it’s ok to ignore the speaker.  It’s not.  He has to learn to communicate in order to thrive in his world.  I can’t just let him be silent.

 

To be sure this will be a long, exhausting process.  But Connor has improved so much in all other areas over the last year that I have the utmost faith that he’ll improve in communication also.  Until then, I can take the video talk.  I’ll just ask him “Are you ok, Connor?” until I get an answer.

Sick Children and the Art of Compromise

I feel like I spend a lot of my time teaching Connor life skills. Things like compromise, politeness, sharing, which are all vital to existing (perhaps even flourishing) in our social world.  Obviously some of these skills are harder to master than others.

Politeness, Connor has down pat.  He says please and thank you (though not 100% of the time, but he’s pretty darn close). Sometimes he even catches me unawares by saying thank you for something I didn’t even notice.

Sharing is a skill that has seen vast improvement over the last year.  He now allows children to play with his toys, in his own house or elsewhere (though there seems to be some invisible timer as to how long the sharing can go on).  He even offers other children (and sometimes adults) toys they could amuse themselves with while the plays near them.  Connor has nearly mastered turn taking, especially on the playground.  My heart swells with pride when I see him wait patiently in line at the slide, instead of pushing and shoving as he did a year ago.  Yay!

Compromise….is something that we are working on….every darn day.

Like most children, when Connor wants something, he wants it now!  Like many autistic children he has hard time understanding or controlling his impulses, so if he wants something now and doesn’t get it, the world may truly end.  Or at least for him it feels that way.  There is no later, there is only now! now! now!

To work on this pleasant little quirk of his (please ignore my eye twitching) I’ve been employing the “first…then” technique.  For example “First eat dinner, then you can watch UP for the 4th time.”  “First put your pants on, then we can go for a walk through the neighborhood.”  You get the idea… probably faster than Connor did.

It took him at least a week to understand what I was saying and how easily he could get what he wanted if he just compromised and did what was necessary first.  Ta da!  It was like a little light bulb went off in his head.  He gets it!  Unfortunately he’s not super happy about it.  Now when I ask him to do something horrendous like wash his hands or eat breakfast or clean up his toys, you know the usual mommy torture techniques, he cries through the whole exercise and sometimes after, despite willingly doing whatever it is I’ve asked of him.

It’s pretty pathetic to watch him quietly blubbering at the lunch table in between bites of hotdog.  Poor poor child to be mistreated so.

Of course this last week of whatever plague we’ve been suffering from was no fun.  When Connor gets sick, it’s like every ABA exercise, every therapy moment, every word he’s ever learned just flies right out of his head and I’m left with a crying, snotty mess.  Yuck!  Every demand placed on him is completely unfair and unreasonable!  Why should he have to take a bath?  Why should he be forced to eat?  Why does he even need sleep???

Lots of yelling, lots of hitting, lots of throwing toys.  The dogs and I tried to keep a good 6 feet out of his range whenever possible.  If we could, we simply left him to his own devices and hunkered down silently in the next room, lest we provoke the beast with some sudden movement.

Connor will be returning to school tomorrow and I might weep with joy.

Yet however bad Connor’s behavior got I realized that he’d return to normal and we’d start practicing these life skills again.  And every time I discuss this training with someone I realize there are a heck of a lot of adults out there who don’t practice the same skills I’m teaching my son.  How many people out there know someone who never shares? or says please or thank you? or absolutely refuses to compromise?  (I can think of a few just off the top of my head…)

So do me a favor this week and pick up the cosmic slack while Connor is still grumpy from being sick.  Say thank you to your checker at the grocery store.  Give the last bit of milk to your husband.  Meet your friend for happy hour at her favorite bar and agree to let you pick next week.

Set a good example for the Connors of the world!  And you just might feel better too.