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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

 

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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!

Disappearing Depression

The fact that I disappeared from the blogosphere again shouldn’t really be surprising.  I tend to do that every once in a while.  I get overwhelmed with real life, events, crazy schedules.  Sometimes I’m fighting a different battle.

This time around I was fighting my old nemesis: depression.  We have a long history, depression and I.  Diagnosed at 16, I’ve struggled to maintain control of my mental health.  For the most part, this is a war I win, though depression occasionally wins a battle.

So why did depression raise its ugly head this time?  It was my own doing, unfortunately.  The good news is that the husband and I are trying to get pregnant.  Yay!!  The bad news is that means attempting to wean off my antidepressants.  There are far too many worrisome studies out there about the relationship between mothers on antidepressants and autism risks in their children.  Here and here.  Given that I already have a child on the spectrum and I was on an anti-depressant for a few months during my first pregnancy, you can imagine my worry and my guilt!  My doctors and I are all committed to getting my off the drugs for this pregnancy, just in case.

But this is where things get dicey.

I weaned off the drugs too quickly.  I went from 20 milligrams to 10 over night.  My body did not like that.  In fact, it stopped reacting to the drugs.  It took about 10 days for depression and anxiety symptoms to set in.

At first it wasn’t too bad.  Sure I was a little more tired, a little more irritable, and lot more hungry, but those aren’t symptoms that couldn’t be explained away by PMS, really really bad PMS.  Then I started losing my temper with Connor.  My normally patient parenting style disappeared.  I felt fed up with him every day.  I had not interest in engaging in play.  I just wanted to plop him in front of the TV and be done with it.  But hey, that could just be explained away by saying I was juggling the needs of a special need child and tired.  Then one day I just started crying.  Someone had something totally innocuous and I just started to sob.  Something was wrong.

Back on the full dose of medication, I had to fight my way back to feeling normal.  It takes a few weeks for medication to work your system back up to an even keel, so in the mean time you’re stuck knowing that something is wrong and not being able to do anything about it but wait.  Like the saying “fake it til you make it” I had to spend many many days trying to get back to a place where I felt like myself again.  I started using Dr. Low’s method of handling my anxiety and depression.  I was back to spotting anxious behaviors, endorsing myself for trying, reminding myself of my averageness, etc. And like always, after a lot of hard work and a lot of self-reflection, I was able to get back to a good place.

The only downside now is that I still need to wean off my medication.  We’re doing a baby step approach now: 20 mg to 15 mg.  Then if I’m ok in a few weeks, we’ll try going down to 10 again.

I need to be ok, whether I’m on the medication or not.  There have been several studies that show mothers suffering depression during their pregnancy experience many different types of disadvantages as well. 

It kind of seems like I’m damned if I do, and damned if I don’t.

There are other things I can do to help my mood while I’m weaning off the drugs: light therapy, exercise, nutritional adjustments, spending time outside, regular therapy, etc.

It’s still scary, though.  Part of me hopes we get pregnant right away and the added hormones help my mood, like they did last time.  And part of me hopes it takes a while so I can get this medication thing worked out.

Either way, all I can do is my best, and hope that’s good enough for our future baby.

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.

Overload

I have been running at level 6 on a scale of 5.  My brain seems to focus and my emotions feel fried.

There are too many balls in the air for even this practiced juggler to catch!

A wedding and a baby shower are in the works.  Each event alone requires seemingly hundreds of decisions.  And inevitably, as in my last post, when there are events, there are little dramas.

Some dramas are bigger than others, potentially life changing.  To deal with the fall out of my invitation decisions, I’ve been thinking a lot about the nature of friendship as an adult, particularly the nature of friendship for a stay-at-home mom to an autistic child.  Being the parent of special needs child means belonging to a very isolating world.  Our children keep us busy running from one therapy to the next, juggling meetings and reports and paperwork until there doesn’t seem much room for anything else.  For me and Connor, I keep trying to add to our already busy schedule.  I want to keep moving Connor forward towards our ultimate goal of mainstreaming.  I need to keep pushing him, keep trying new activities, new therapies, new ideas until we strike upon something that works for him.  And although this is best for Connor, it doesn’t really allow me to develop friendships with the other parents.

Most other parents of special needs children are dealing with the same issues, and the same potential social explosions from their own children.  Play dates have to be carefully coordinated and can be easily cancelled if a child’s behaviors are out of control that day.  Sure I have time to myself during the day, but who else does?  My Pilates classes are filled with retirees!

So time to seek out activities that will make me joyful!  I’ve signed up to volunteer with a few programs, as well as subscribe to a book club.  But not immediately since I’m in the midst of planning a shower and a wedding as well as parenting my autistic child!  And round and round we go until I feel just about to explode!

To top it all off my great-uncle passed away.  Nearly 90 and suffering excruciating pain due to cancer, he is much better off in the arms of our Lord than he was dwelling here on earth.  And though it’s hard to develop a close relationship with a man who devoted his life to serving the Lord, as well as his brothers and sisters, he was still a man I loved and respected.  He baptized me, he blessed me, he carried God’s love to me throughout my entire life.  And I miss him.  I will miss him.  I will miss him.  I will miss him until I join with him again one day in God’s presence.

So today while my flu infected son naps, I take a little time to just let myself feel everything and I don’t try to stop the tears.

Back in the Swing

I’m finally feeling like my normal self again and getting into back into the swing of things.

It’s difficult to know what the problem is, work towards making things better and still have to wait for improvement.  I hate increments! I just want everything now!

Just kidding…sort of…

My ex often accused me of being a contradiction.  And I admit it, I absolutely am.

With my sweet baby boy, Connor, who is often not very sweet, I have patience for days!  Hand me a crying baby and I can pace with that child for hours.  Give me a craft project to do and I’ll wait for glue to dry, paint to settle, pieces to arrive like there is never a deadline. Send me your most obnoxious, slowest reference customer and I’ll happily sit there listening to them prattle on about how they think Florida was one of the original 13 colonies.

But something that has to do with me and what I want, I want it, like, yesterday!

The house, the yard, weight loss, mental health, getting pregnant, I want to be working on all of it now.  Actually, I’d like to have accomplished all of those things so I can sit back and relax.

Instead I have to wait.  There’s a time and a place for everything, unfortunately.

I feel like Veruca Salt…a little.

I’ll try to be more patient for Christmas and remind myself that all good things come to those who wait.  Damn it.

Winter Grays, Blacks and Blues

I am many things.  I fill many roles. I exemplify many virtues and many failings.  I tend more towards happiness than unhappiness, more towards optimism than pessimism, more towards believing the best in people than believing the worst.  I keep my chin up, my head high and smile through the pain, knowing that tomorrow will be better.

And that usually works.

And the medication usually works.

And I’m ok, I’m good, I’m on solid ground.

And then the world changes a little bit and I’m reminded that my condition isn’t curable, just manageable.

I was diagnosed with Bipolar disorder at 20 after my previous diagnosis of mild depression was thrown out.  After a sexual assault, I went into a months long manic period.  If you’ll read the link I’ve included I engaged in nearly all of the symptoms listed.  I was quite literally out of control.  During that period I felt like I was outside myself.  I could see what I was doing was harmful and I just couldn’t stop it.  One day I had a panic attack and thought I was having a heart attack.  When the ER doctors told me what it was I decided it was time to go back to see my old psychiatrist.  We tried various drug cocktails, including Lithium (which made me feel like I was experiencing the world through a thick layer of cotton) and it took a long time to figure out what was going to work best.

The mania period ended just prior to my senior year of college.  I was walking the tightrope of mental health mostly because I still felt like an open wound.  I supplemented my medication with alcohol, wild behavior and far too many dates.  I packed this life cocktail into my wounds hoping they would heal but they merely scabbed off.

I would feel better for a while, stop my medication, and then fall right back into a depression after a month or so.  I wanted so badly to be cured, to be fixed that I was very close to delusional about what was actually going on with my mental health.

It took years of feeling better then feeling worse to finally commit to staying on my medication.  It’s taken years of therapy to understand that I’m not fatally flawed because of my chemical imbalance but that it is as much a part of my as my eye color and the size of my feet.  I can do nothing to change it.

That was a hard pill to swallow (pun intended).

For years now my mood has been stable, I only rely on a very low dose of an SSRI, a medication that deals with increasing the amount of serotonin in the brain.  I use cognitive behavior techniques in my every day life to combat the symptoms of my condition.  Recovery International is a mental health group that focuses on the teachings of Dr. Abraham Low and his work with cognitive behavior therapy.  My former in-laws introduced me to this work and I will be forever grateful.  There are few days that go by that I don’t use the tools that are taught through this work.  Two favorites of mine are that I “have the will to bear the discomfort” of an unpleasant situation and to remind myself that I am just an average person, so nobody expects perfection from me.  With these things working in my favor life is generally good and the real Erin gets to shine through the condition.

Still there are times that I feel down, or blue, when the world’s colors seem a little grayer, the night a little blacker.  Usually I can shake it off in a day or two, but sometimes it lingers and I’m reminded that my fight is a life-long one.  The coming of winter always reminds me of this most poignantly.  Colder temperatures and longer nights rob me of my precious sunshine, sunshine which helps create the chemicals that keep me balanced and happy.

For a while there I didn’t even recognize that I was feeling worse.  I felt tired, but I’m always tired (I’m a mom!).  I lost interest in my normal activities, but I blamed that on being tired or the busy schedule my son has.  It wasn’t until I realized how disconnected I felt from everyone around me that I knew something was wrong.

Now I know and now I can fix it.  Sure it won’t be permanently fixed but identifying the problem is half the battle.  So long walks with the dogs, more vegetable gardening, eating al fresco will all help get me out into the limited sunshine hours.  Purposefully engaging in social activities, making myself complete to do lists, and writing, writing, writing will help me “fake it til I make it.”

And sooner than I realized I’ll be back to singing silly songs with Connor, baking delicious treats, and generally my nerdy, happy self again.