educating owen — one mother’s special education

check it out over here…I’m writting again…

Due Process Legal Fund

I’m hoping to find some time in the next few days to explain this in detail….but for now, I’ll ask you to check out the following link:

http://www.fundable.com/groupactions/groupaction.2009-04-20.9600012654/groupaction_view

2008 in review

It’s been a long time since I’ve posted on this site…so long, in fact, that the back end of wordpress looks completely different.  I’m so confused.  While I have little time to write these days,I wanted to at least wish anyone who still checks here occasionally or receives a feed of this blog a very happy happy holidays!!!

The following is my annual holiday letter that goes out with my annual holiday cards.  It should catch you up a bit..

Dear Family and Friends,

As most of you already know, after living in South America for the past 5 years, we have returned to the United States and now call Hillsborough, North Carolina home.  Needless to say it has been an interesting and often difficult transition back to life in the States but we are settling in, and while we miss our friends from abroad, we are happy to be closer to our families and friends back in the U.S. 

I wish I had adventurous stories to share about our travels in distant lands, but alas, I do not.  Aside from exploring a bit of North Carolina, which is a beautiful State, we’ve been rather stationary these days.

I wrote at the end of last year’s letter how we were planning to take a trip to Florida and NJ in early 2008.  Well, we did take that trip and even celebrated Abbey’s 5^th birthday in Disney World.   But, we also had to add an extra week on to that vacation for non-vacation related matters.  And this is when 2008 got really interesting…

T o make a long story somewhat short, late in 2007, Owen’s preschool teachers in Argentina expressed some concern with his development (the Argentine school year ends in December) and requested that he be evaluated for delays.  This didn’t really come as a surprise to us as we too had our own concerns.  As a result, the State Department set up a week long comprehensive evaluation of Owen at a children’s developmental center in Miami. 

Owen underwent a battery of psycho-educational testing and in the end the doctors mentioned things like Aspergers and autism and sent us home to wait for the final report and diagnosis.

March came and went and I wish I could tell you that something exciting happened, but I don’t remember.  Everything between Owen’s evaluation and the final report is a blur.  Owen didn’t return to the same school but instead attended a small English-only expat run preschool.  He began to talk more, stringing together 3 to 4 words one week and then 5 to 6 the next.  We stopped counting one day after he spontaneously said, “look mommy. there.  a bus. a red bus.”  The first time he asked me for something to eat instead of screaming at me and pushing me towards the cupboard, I cried.   As we focused all our efforts on learning about what he might have and how best to deal with it, his ability to communicate with us, which was key, improved 10 fold.  That made life easier.

Then April arrived and life got turned upside down.  First we learned that aside from all our efforts to stay out overseas for one more assignment, we were more than likely US bound.  Returning back to the States definitely was NOT in our plans.  THEN, we spoke with Owen’s doctor.  She told us, very matter-of-factly that we have a very special child who is at the same time extremely smart but socially and behaviorally challenged with some serious communication deficits.  Owen was officially diagnosed with PDD-NOS, an autism spectrum disorder.   

With this information in hand we, and everyone else with whom we consulted, thought it best that we return to the States where we could get Owen the best treatments and therapies.  Arran was assigned to Diplomatic Security’s Greensboro, North Carolina Field Office. 

With this news, and the understanding that early and intense intervention for a child diagnosed with an autism spectrum disorder is critical, we curtailed our assignment by a few months and came home.  By the end of April we were gone.  Our three years in Buenos Aires were magical and leaving was one of the most difficult things that either Arran or I have ever had to do.  We left behind many good friends and a life that we had grown to love for so many reasons.  Oh how we miss it still.

Since April our lives have been consumed with transitions for the family and finding therapists and treatments for Owen, none of which have been easy.  Poor Abbey seems to have gotten the short end of the stick this year. 

Let’s see…what have we been doing since we got back?  We were lucky to have family in the NC area that we were looking at moving to and therefore were able to crash with my brother Michael and sister-in-law Aimee for a few weeks.  It was definitely much nicer then hotel living and we are SO grateful that they opened their home to us. While we were at Mike and Aimee’s we spent a lot of time house hunting.  AND after looking at way too many houses and a few failed bids, we finally found a great place that we now call home. 

Sometime between having our offer accepted on the house and closing we headed out of town for a family road trip to the mountains.   It was fun to go someplace new in our own country for a change.

We thought that after finding a house things would start to fall in place and we would be able to get settled in.  But things didn’t quite work out that way.  The day that we were to receive our storage lot that we had left over 5 years ago we found out that most of the stuff was covered in mold – black mold.  Nothing is ever easy, is it?  But it did give me an excuse to go shopping…so it wasn’t all bad.

Over the summer we got settled best we could into our new house, Abbey spent her days at camp and Owen had a lot of home visits from teachers and therapists that we had found to help him out. 

At the end of August, Abbey starting Kindergarten!!!  And then in September, Owen started preschool.   This year alone, Abbey has taken tennis lessons, participated in a soccer skills course, tried gymnastics for a few months and continues with her dance classes – we’ve added Hip Hop to the repertoire.  Soon she will become part of a new Girl Scout troop that is forming in the area. Owen has been busy with social skills play groups, occupational therapy and speech therapy.   I’ve been busy keeping up with them!

Arran seems to have gotten back into the swing of things and is knee deep investigative work.  He’s also taken a few trips for training and for protection details. 

To be completely honest, transitioning back to the United States has been a lot more difficult for me than I was prepared for.  It didn’t help that at every turn, we hit road blocks with the school system with regards to Owen, and everything seemed to be a struggle.  I found myself obsessing on everyone else to my own detriment.  So I did the only thing I could do to keep my sanity. I went back to work.  I currently work 30 hours a week for two Centers housed at the Sanford Institute for Public Policy at Duke University.  It’s been almost 2 months now and I’m enjoying the work, I’m enjoying having something to do for myself, and enjoying having something that has nothing to do with either my kids or the school district that we are fighting with.  

These days, we keep ourselves very busy between work, family and the kid’s schedules.  As for Owen, he is a completely different child then 9 months ago.   His behaviors are much more manageable, his sensory issues under control and his language skills more developed.  We have been very fortunate for all the support we have received from both family and friends. We truly feel blessed. I used to spend a lot of time and energy being angry and upset at the cards we had been dealt, I asked a lot of why questions – Why me?  Why him?  Why now? – And I cried a lot.

These days, I appreciate the small things in life a lot more and the self pity has been replaced by the amazement of the strength of my husband, the resilience of my daughter and the incredible progress of my son. 

With that, I, along with Arran, Abbey and Owen, wish you all a very happy and healthy holidays and a wonderful new year.

Until next year,

Nicole

when HFA stand for Hellacious Fight Ahead

When your child is diagnosed with an Autism Spectrum Disorder and you start to read and do research about what s/he needs, one of the first things you learn is just how very important early intervention is to the management/treatment of autism.  And not just early intervention, but intense early intervention. 

For someone like Owen this means speech therapy, occupational therapy, behavioral therapy and preschool.   

When we left the psychologists office in Miami back in February we still did not know what her final diagnosis was going to be, we had an idea that he would be on the autism spectrum, but not 100% certain at the time.  One of the last things she said to us, and much of what she said is a complete blur, but this i remember, was that we shouldn’t worry too much because there “are lots of people like Owen at MIT.”  I think what she was trying to tell us was that Owen will be successful in life but all I heard was that he was going to be a super bright quirky genius type boy who had no friends and stayed by himself all the time in a lab doing nothing but school work (not that I think for even one minutes that all people who attend MIT are like this…I was much more focused on the autism than the MIT part of it).   

Owen is smart.  We knew that before we even had him tested.  IQ testing told us just how smart he is — very very smart.  It’s kinda odd when you find out at the same time that your child is both disabled and gifted.  While I don’t like to give too much weight to IQ tests, what it does tell us is that Owen has an amazing capacity to learn; that he can be taught that which his autism robs him of — like how to socially interact with peers, how to read faces and understand emotions, how to empathize, how to regulate his behaviors and how to manage his heightened senses.  In the past 6 months, we have found, in order to do this, to teach him, he needs to be constantly challenged by his environment, pushed and tested and forced to deal with things head on.  And only after big huge battles, big blow outs, he “gets it” and changes.

Owen is a quick learner.  For instance, Owen doesn’t like to wear underwear — we think it’s sensory issue, like how he needs to have all the tags cut out of his clothing before he will wear them.  Until this morning, I had to fight with him to put underwear on.  Sometimes he complies, other times I’ll conclude that it isn’t a battle worth fighting.   We always remind him that everyone else wears underwear — mommy, and daddy, abbey and all the other boys and girls in his class.  He’s been going to preschool now for 2 weeks.  I’m not sure, but I’d say that the kids probably go to the potty in groups.  He has apparently seen that all the other boys and girls wear underwear.  I’m not sure if the teachers have said anything to him or if what we had been telling him finally made sense, but this morning he informed me that “boys wear underwear and girls wear underwear and owen wears underwear too.”  (Now, if I can only get him to stop referring to himself in the 3rd person…ugh!)  So that was that.  Then I told him that it was time to brush his teeth.  He wasn’t having anything to do with that this morning.  One battle at a time.  Underwear was on, teeth would have to wait.

It’s little things like this (and bigger issues as well) that parents of children with autism have to go through all day long.  When I’m around other mothers of children with Mild Autism or High Functioning Autism (HFA) like Owen we share our crazy stories and laugh.  “No one would ever believe the crap that we have to deal with on a daily basis” someone inevitably says.  At a playgroup that Owen attends, one mother has to go into the building before her son to make sure the bathroom door down the hallway is closed before he comes into the building, another mother shares how her son has to have two blue crayons every morning at his desk at school even if the color of the day is “red.”  I share how when Owen goes to the bathroom to poop he has to remove all of his clothes, even if we are in a public restroom.  Another mother shares how her son does this to pee and poop — we laugh together at the simple insanity of our lives. The things we allow because we have to, because it’s just how it is, how life is these days. 

When we left Argentina we did so because we couldn’t get Owen the early intervention services that everyone was telling us were so important for him.  We returned to the US because, we, like every other parent of a special needs child, thought that those services would be available.  They are available, at an exorbitant cost.  And while we were naive to think that the State of North Carolina would provide most of the services, that the federal government under the IDEA act, had provided children like Owen the right to an education.  We were wrong.  

The short of our story (which is not a unique story by any means) is that while Owen was found eligible for services under his diagnosis of autism and and IEP was written, he was only offered 3 hours of services a week — a far cry from the intense early intervention that researchers, doctors and educators say he needs.  We are positive that Owen will be able to enter a typical kindergarten class with his peers when the time comes but in order to get him ready he needs intervention.  He’s getting what he needs, of course, because we have no choice but to provide it to him privately.  What else are we supposed to do? 

I’ve heard of stories where parents are bankrupted by their child’s autism.  We aren’t there yet, but I understand how this can happen.

I’m angry with the situation.  I’m very very angry with how unfair this all is.

When people find out that we’ve consulted with a lawyer to see what are rights are they think we are crazy. It’s not a fight we can win, I’m told.  It’s not a system that can be easily changed, I hear people say.  I listen, and I nod, I tell them that I know, I understand, I get it, I do.  But, what else am I supposed to do?  What else can I do but fight.  I fight for my son, for his rights.  Isn’t that my job?  This is not an easy battle, but neither is the fight against autism.  It’s just unfair that you have to do both at the same time.

highs and lows

in one of my earliest posts I mentioned that how when I’m depressed or anxious I can’t write.  But how when I’m happy and content with the state of things I have no problems spilling my inner most thoughts onto the page.  You’d think that this would be the opposite.  I do.  But it’s not. 

I was able to keep this blog up while we were in Argentina in part becayse I LOVED my life and was totally happy.  A review of photos and videos from the past three years confirms this fact.  How I so long to have that again.

Since we’ve moved back things have been hectic and there have been a lot of stress in my life.  It’s not surprising that I’m pretty down.  It was to be expected.  Even my rock of a husband has had his moments over the past few months. 

But, there is something a bit different these days.  It’s that my moods are so unpredictable and so intense, particularly how irritable and angry I can become.  For no apparent reason, or at least not a good enough reason.  My medication doesn’t seem to be working to control my anxiety and I have to take additional medication to manage the minor panic attacks I seem to be having.  I can handle the depression, I can manage that.  What I can’t deal with, what I have never been able to deal with is the anxiety. 

A says that he can tell my moods based on how I walk around the house.  The heavier my heals hit the hardwoods the more anxious I am.  I breath differently he tells me.  He knows its coming even before I do, or at least before I admit it.  Then I pick fights with him, get insanely angry with the kids for doing the silliest of things, and feel like I’m going to explode.  I know what I’m doing, I know that I shouldn’t get so angry and that I should try to control it but I can’t, before I know it, I’ve exploded both inside and out.  Deep breaths don’t seem to be working.  Xanax does.  Then I feel awful, guilty, sad.  I say things like, “I hate my life”, like “my kids would be better off without me”, like “I’m leaving” and “I want a divorce.”  I don’t mean any of them.  I still say them.  I can’t help myself.  I feel awful when I’ve finally calmed down and have to face what I’ve done and said.

Together, A and I decided that it was probably best that I talk to a professional about this.  In the 9 years that we’ve been together even he hasn’t seen this type of intense behavior.   I’ve seen many mental health professionals during my 31 years.  I’ve been diagnosed with a whole number of things.  Personality disorder, general anxiety disorder, depression, anxiety, self injury, etc.  None of them ever seemed to explain it all, to make complete sense to me.  It was always like the doctors didn’t really know what was wrong with me but felt the need to put a label on whatever I was going through.  I longed for a diagnosis so that I could be treated and it would go away (wishful thinking). 

And then yesterday I had a conversation that actually made some sense:

“Has anyone ever mentioned bipolar to you?”  the doctor asked.  “Sure,” I said, “Doctors have always used the the words manic depression and hypomania to describe certain times in my life, but it was always ruled out as a diagnosis for some reason or another.”  “Well,”  he went on, “sometimes in patients that present with depression and anxiety in their teens will later be diagnosed with what is considered low grade bipolar disorder in their 30s-40s.  It may explain your irritability and intense anger.” 

Hmmm.

I left the office without any decision to change my medication or knowing what are the next steps were.  Just that I have another appointment in 2 weeks.  I oddly felt better when I left.  It just made sense.  It really did.  Maybe I always thought that this was the “problem” but was waiting for someone to confirm it.

And then again, maybe it’s not the answer.  For now though, I’ll hold on to my feeling of relief and go with it.