Friday, July 30, 2010

Finding Miss O a New School

Because our EI options through MESD are crap.

I know there is no way to save the EI program at Edwards, but will continue to send out bitchy emails to anyone I an think of. So now the practical move towards finding Princess Pea a new "home".

My options break down to this:
Find a copy of the Edwards program so we can slowly draw her out.
Throw her into a more structured program that mimics kindergarten.

Isaac did well in the latter. His EI experience at Jason Lee (and if you don't know where that is, neither did I before we attended there), was very good. He liked the structure, started to speak much more clearly and more often, and made friends with a lot of the typical kids there as peers. One of them ended up being in his K class at Sabin, and it was her move to NY half way through their kindergarten year that triggered Isaac's anxiety attack.

So I am trying to be clear on what I have for goals for Olivia, and which program will be best to reach those goals.

The greatest heart ache of Autism, for the parents, is that for the most part we all have the same little goal, and yet that little goal seems so unattainable.

We want our kids to be happy. To make friends. To get as much out of the world around them as typical kids do. We don't worry about getting into the TAG program, or our kid making the baseball team. We just want them to be, well, kids. With all of the good and bad that comes with growing up.

Instead of being locked up in their own heads, restricted by their own bodies that sometimes just won't do what they want them to do.

Isaac is already so close. He makes friends, does well in school, likes to play sports, plans his future (he wants to work at McDonalds, but I tell him he has to go to college first), and tries very hard to control his anxiety. It is hard work, but he is on his way.

Now, little Miss O, what about you?

Thursday, July 29, 2010

This is Unacceptable: PPS Fails Us Again!

This will have to be short and to the point, since I am far too angry to think clearly and am posting this from the parking lot of the Hollywood Library.

The Early Intervention program at Edwards is closing. The kids are being moved out into other programs, the teachers are finding places to move on.

These kids are already at a disadvantage. They have a disability, or are socially vulnerable. Or in the case of my daughter - both. Now, they are being shoved around in an already over-crowded system, with little or no warning. Oh, no, we were told with one week to go. Thanks, PPS.

Now I have to think about what to do. Write to PPS, of course. But I am pissed, and that isn't going to be enough. The Oregonian? The local news channels? We as parents need to write in individually, but we also need to present a united front.

The nearest EI program for us, by the way, would be Roseway Heights. And that is NOT going to happen. I know this program, and loved the staff. Isaac did his EI with this team. But it is crowded, they get fewer services, and this little band of pre-K kids are shoved into a giant school full of K-8 graders. And for a child with ASD, social anxiety, and a fear of chaos, my daughter would fail miserably. Olivia will go to a private program.

And I know personally what happens when PPS fails these kids. They end up at Pioneer. Last resort. Kids being brought to class in security vehicles to prevent them from harming the driver. Kids hurling curses in the hallways sounding as if they suffer from Tourettes. And expensive per child due to the staff ratios and need for special services to help these failed children.

The fear goes one step deeper. What are they planning for Isaac's program in the fall?

Tuesday, July 27, 2010

Me and the IEP Part II

And welcome to another whiplash-inducing posting on my blog. Get used to wearing a neck brace, because over the two months I will be ALL OVER THE PLACE.

Do you ever feel as if your child's ASD is just an amped up piece from your own page of dysfunctions? My poor kids. They never really had a chance at typical, since my husband and I are skirting the spectrum at times ourselves.

I have spent the last few weeks hiding in the Parent's Lounge at Edwards School, where O gets her Early Intervention. Love the place, love the staff, BTW. I hide out of sight, armed with the tools that I will need for Isaac's transition meeting: copies of his most recent IEP, a notebook, and a copy of The Way I See It by Temple Grandin (yes I know I said I wasn't doing ASD books this summer and yes, I do know I told Temple to "Suck it" in a previous blog. I did warn you about the whiplash thing).

Awesome book, by the way, and my personal savior right now. Sorry, JC.

She has a section on teaching and education that has helped direct all of this IEP/Transition mess for me. In particular, her section on Problem Solving Skills. She goes on about how a child with an ASD has to be taught how to approach a problem, decipher what the goal is, break down the pieces, and figure out what is important to reach that goal.

Apparently, I needed to be "taught" (or at least reminded of) this too. Now the piles of books, papers, studies, and plans that are the result of Isaac's two years of PPS education are a little less frightening. Even without the vino. I am making my outline, indented and double-spaced, with a thesis, introduction and conclusion (knew all of those years in college would come in handy again someday).

Yes. I know. I am a dork. But I feel a much BETTER dork right now. As if, in all of this, I suddenly-and-just-for-a-moment, got control of life again.

Monday, July 26, 2010

Me and the IEP

There are the IFSP's. We had two years of those. Then came the IEP's. Two more years. Then the amendments. The Functional Behavior Plans. The transitional plans. Four schools worth, four teachers, two ASD specialists, and one Expulsion Hearing proceedings.


I have all of this spread on the kitchen island. I already feel beyond confused, frustrated, and am contemplating the bottle of Merlot on the counter. Piece by piece I pull the papers out, look them over, try to interpret all of the information from all of the professionals. Add to the pile pieces from the neurologist, speech therapist, and OHSU.

Isaac is transitioning. He is leaving his "behavioral boot camp" (my pet name for his Pioneer class), and leaving to test his new skills out on a SLP class at Alameda. And, with fingers crossed, moving into the mainstream.

This will not be our first attempt at an SLP class, nor creeping into the mainstream. Isaac started out in a typical Kindergarten class at Sabin, with a para-aide assigned to him for the first 8 weeks (she ended up staying with him for 10 weeks). We survived another 2.5 months without our safety net before it all came crashing down. His anxiety finally got the best of him, and Sabin had no resources to handle this. His kindergarten teacher (retiring at the end of that year) simply said she could do no more for him. And despite the fact that at this point I detested the woman (aren't K teachers supposed to be nurturing?) I had to agree with her. More damage was being done, so during spring break I moved him to Roseway Heights, to an a SLP class.

I had no idea SLP classes even existed. How ignorant was I? I always assumed that all options would be explained to me, that PPS and I were on a team working towards the same goal. It is most likely true in some situations, but not in this one. There was a slow leak on a need to know basis, and I was too naive to look up this information independently and ask the right questions.

Roseway was suggested because it was a small class with a stellar teacher. This was true. Ms. Margot was beyond fantastic. She was smart, organized, fully trained, and believed in each of her students' potential. And Isaac thrived. And then she left. Her husband's job took them east. Her replacement? That is another tale.

So here I am. We have been up and down, had great and then frankly crap teachers. He has been a tolerable, then an intolerable, and now a model student. For the first year and a half of his academic career, I dropped him at school with a feeling of dread. I never strayed too far away, knowing I would get a call to come help, or more often than not, come get Isaac. Since he arrived at Pioneer, nothing. I drop him off knowing he is going to have a good day. That he is going to learn, play with friends, have successes, and run out the door at the end of the day shouting "mom, I had a great day!".

Now we are getting ready for another transitional meeting, from Pioneer to Alameda, to an SLP class and then out into the world. It is a different ball game, to say the least. All of these papers, all of this experience, and naive no more, all of the information gathered from a dozen or more sources.

Feeling better equipped this time around. But still scared. A bit jaded. And, always, hopeful.

Thursday, July 22, 2010

How Do We Let the World In?

A friend and fellow ASD parent, Tina, brought up a very good point today in a comment she made about how the rest of her world handled "knowing". She mentioned that some of her friends seemed to drift away, while others don't really mention it at all.

How, when, and why do we let the world in on our diagnosis? Obviously, when behaviors get to a point, the subject cannot be avoided. Like when Olivia starts stimming over her favorite Ni Hao Kai Lan book (which she is doing right now), it is a good time to explain that she isn't having a seizure. This is just her little way of processing a big day. Such stimming has ended more than one trip to Barnes and Noble, but these days I can snap her out of it if I have to by distracting her with something else.

I will admit it. When Isaac was first diagnosed, we hesitated to tell anyone outside of family. I think we were afraid that our friends would look at us differently. FEEL SORRY FOR US. Was it pride? I am sure a little. But beyond that guttural reaction, it was because we didn't feel sorry for ourselves. It sucked, there were some tears, but by the time Isaac was finally labeled, it was more of a relief.

Okay. Now we know what is going on. What can we do now?

Now we freely talk about it. What changed? Not sure. Maybe we grew beyond our hang-ups, maybe we realized that it wasn't the end of the world. Just a minor gravitational fluctuation.

I think I will start asking, those friends of mine that I think will answer honestly.
Will post about that later.
Curious to those who are reading this...what was your experience?

Wednesday, July 21, 2010

And the Topic for Today's Daily Rant...

Trying not to be bitter about yet more staff cuts for Portland Public Schools. A harder subject to bear as I am preparing Isaac and myself to face the fall term. Gathering his most recent IEP reports, his recent behavior and I.Q. results from OHSU, and putting together a simple one page profile of Isaac as a person as we prepare for a new school, a new teacher, and new program. Should I include a picture or two? Laminate the thing? It's beginning to feel like a lame PowerPoint presentation now.

I need to go into Isaac's history with PPS a bit before my rant and anxiety can have their full impact. But honestly, right now, I don't have the energy to. It is long, complicated. Rife with failures and flaming melt-downs on all sides. And not one but two police reports. And a few medics.

I wish I was kidding.

But I will say this. Since Isaac departed Early Intervention and roamed into kindergarten, he has been to three different schools. And to put it into context, he is in first grade. Two years, three schools, and as we prepare for second grade, we are walking through the doors of our fourth school. What happened? This is where I get frustrated by the cuts in PPS.

We were barrel-rolled into a kindergarten class (100% typical, and he was assigned an aide for 4 months), I ignored the misgivings I had with the teacher (she actually said "I don't think he belongs here") to handle it based on the assurances from PPS. It was a disaster. She actually would roll her eyes when I came to pick him up at the end of the day. And that was the best thing I can say about her. Let me add that she retired at the end of the year (I swear, not because of us!). So she wasn't in the mood to put up with a less than typical child in her last year (bitter bitter).

By spring vacation of kindergarten, I pulled him out and we sent him to a special class at another school (our top-tier school did not have a great special ed program). And it was wonderful. The teacher was brilliant, engaging, and loved her students. Isaac thrived. And two months later, she left Portland to move back East. Her replacement was pulled out of administrative duty to take over a class that she could not handle, and we were not the only family there that were horrified by the ensuing chaos. He lasted in that class for two months. One day he just had enough, and walked from the class. She tried to restrain him (despite a "do not restrain" clause in his IEP) and he grabbed her hair, snapping her head back. The Vice Principal witnessed this and called in both the medics and the police. Despite even the teachers protestations, she was piled into an ambulance and sent to the ER (and was fine). All by 10AM.

The following process of getting Isaac out of that school is a tale in itself, and how we ended up at Pioneer is yet another. But I will say that since the third week of school at Pioneer (and by the way, you really don't want your child to go there, it is a last ditch option for very bad situations), I had a child incapable of learning, reading, behaving suddenly become a model student. The second school told us that Isaac was manic depressive, that he was working with a below average I.Q. and would be limited in his abilities in school. Now that same first grader is said to be happy, smart, and exactly academically where a 1st grader should be, except for in math, where he has started a 3rd grade package.

That, my friends, is the difference between a school unprepared and understaffed, and one that is. But he can't stay at Pioneer (and we don't want him to). And it is time to move on to a more permanent position.

And I am scared shitless.

Tuesday, July 20, 2010

I Know it Looks Funny, But it Hurts...

Isaac & Olivia heard a few words they rarely hear, as I managed to gouge out the bottom of my foot on a nail that had somehow emerged from the 100 year old wooden floor (darn you, old house)!

Now, I know it looked funny, as I hopped on one foot, the other dripping blood, to the bathroom looking for neosporin and any band-aid I could find (this time, Dora and boots swimming). And I know there was a lot of blood. And there was no lack of drama as I considered whether or not this was going to require shots or stitches. So the groundwork was laid for their reactions.

Isaac is not insensitive, but sometimes he reacts to what he perceives as the most dominant aspect of a situation, without considering the rest. So, mom hopping and cursing her way to the bathroom was just plain FUNNY! I mean, come on! He did manage to gasp out "are you okay mom", which after 3.5 years of training it is good to know that he remembered that much.
And I managed to not lose my temper enough to remind him that laughing at someone else in such a situation is considered not very nice. I tend to lose my temper when I am in pain. Yes, the delivery room was not a pleasant place to be with me. I may have thrown something at a nurse. Isaac managed to pick up this bad attitude to pain from me.

And because it is a spectrum, Olivia decided to hang out at the other end of it. Horror. Tears. Saw the blood coming through the band aid and decided that I was dying. "Oh momma, don't die! Oh no! You have to go to the doctors house (does she mean hospital) RIGHT NOW".


Yes, I am hurt. No, I am not dying. So I calm everyone down, and hobble into a corner to pout just a tiny bit. And bleed in peace.

Monday, July 19, 2010

...And Then There Were Two.

We watched. Thinking, hoping that the odds that are daughter, a girl for crying out loud, would not get this disorder that effected mainly boys. I mean, what were the odds.

Well, pretty darned good.

What were our signs? Less obvious then Isaac's. She smiled, laughed, made (and still makes) great eye contact. She just didn't really talk. And then the stimming started. Loud oral noises, the sound of sharp intakes of breath over tongue and teeth. She was not quite two when we finally made the inevitable appointment to have her diagnosed. And soon after, there was some regression in her social behavior and eating habits. She ignored her friends, and basically stopped eating solid food.

I am sure I cried a bit. I am sure I cracked open a few bottles of wine. I am sure, just as with Isaac, I went through a small mourning period, when I had to let go of the child I thought I would have and accepted the child that I did have. Still, I don't remember it quite clearly. At this point I was ass-deep in getting Isaac into a good space, and signing O up for all of the speech and occupational therapy needed, basically taking care of the business of autism. For two. This would just have to be our version of "normal" for now.

Thursday, July 15, 2010

First, There Was One...

Seriously, where to start with that one? He has been my biggest worry since well before he was diagnosed. And, I am a bit sad to say, he was diagnosed later then he should have. All of the signs (glaring, blinking and in neon) were there, but every time I brought it up to not one but two pediatricians, they told me that he was a bit delayed, but still within the range of normal.

And those signs? The earliest one should have been the biggest one. Hand flapping. Every time he saw a spinning object, he would just shiver with excitement and start flapping his little hands. Then poor motor skills. Delayed speech. And when he did speak, it was as if he was speaking a slurry foreign language. My little Drunk Frenchman. And he never pointed at objects that he wanted.

So pull out your ASD Handbooks, and look under "signs", and then feel free to smack me in the head and say "great going, Sherlock". I still look at videos of Isaac from those early years and wonder how on Earth it was missed. Except to say that we really wanted those two doc's to be right. Even as he was being kicked out of his 3rd daycare, and the delta between him and his peers grew wider and wider. He was a loving and affectionate little boy, who had a real interest in other people. Didn't that mean he wasn't? Shouldn't he be lining up cars and OCD-ing about Thomas the Tank Engine if he was?

He was four-and-a-half before it all came together. First Kaiser gave him his medical diagnosis (moderate to severe? really?), then MESD gave us the educational one. And in a flurry of paperwork and parent meetings, he officially entered the Spectrum.

We still feel guilt it took that long. Lost years, that he can't get back and all of that. Letting go of that guilt is still a work in progress, and I am sure he will figure out a way to funnel that guilt into the latest laptop or MP3 player some day.

Since then things have gotten better. And worse. Will go into that later. I just remember looking at my infant daughter as we were going over the official paperwork to enroll Isaac into Early Education. "Thank God she is a girl. Will not have to worry about her as much. What are the chances that she, a female, will have an ASD?"

Wednesday, July 14, 2010

Do I Need a Shrink, or a Stiff Drink?

So many books. Falling off the library shelves, into my bag and into my head. This weeks list?

School Success for Kids with Asperger's Syndrome (and neither kid are actually Aspie's).
The Autism Handbook
The Autism Answer Book
The Way I See It: A Personal Look at Autism & Asperger's

Each book has the ability to send me into a panic, make me feel incompetent as a parent, or thrill me because my children are not THAT bad. None are particularly healthy.

I think I need to read a book with actual plot, one that distracts me and maybe even enlivens some sedentary part of my brain. I know I can do it - I did manage to read 4 books on the recent trip to France.

So here is my summer resolution (can you have one of those?). No more ASD books. This September Isaac is moving away from his nice safe "special school" to the more hectic program at Alameda. Now, granted, he will still be in a special class as they transition into mainstream 2nd grade, but our experience with PPS so far has been fairly harsh, so my expectations are always low to the ground. Ok, subterranean. And while I am calm now, I expect to be a basket case when the fall term starts. And the only way to remain calm between now and then is to put the books away, pick up some trashy mystery novel, and enjoy the summer.

So suck it, Temple Grandin, Ph.D. You are going back to the library.

Monday, July 12, 2010

We Are All on the Spectrum Now

ASD has this way of taking over your life. All of it. There is no way of getting around it. So trying to not become obsessed is my task for the moment. I really don't want to be one of those moms other parents avoid because after awhile, it just gets too uncomfortable.

Humor has helped. Wine has done wonders. Compartmentalizing works at times, but hard to manage after awhile. I have cried, whined, waded through the murk of self-pity. Ate a hell of a lot of chocolate. Went well with the wine.

One day, I was driving. To or from who knows. And I finally started to question what was "typical", what was normal. What was normal? I feel like a fairly normal person, but breaking down my childhood, it was a bit weird and complicated. Yet I am happy, have a good life, good friends, good marriage, regret nothing. So maybe there is no normal, just variations on a theme. And this is our normal, and that is fine. It may be weird and complicated, but what isn't these days?

Friday, July 9, 2010

Don't Be Sorry

And don't feel bad for us. It isn't necessary. Go ahead and ask questions.

Whenever someone finds out about our ASD, there is that moment, that moment when they are deciding how to react. And to be honest, I have not been very consistent about my own reaction to them knowing. More often then not, reaction from teachers, doctors, friends and family has been "I'm Sorry". And I have swung wildly from defensiveness (I don't need your pity), to apologizing for making them feel bad for us.

I have settled for the moment on "Don't feel sorry. We are lucky". And I mean that, because in this journey I have seen children far more affected, families shredded, people living in a state of crisis day in and day out.

There is Autism, this very broad label, and there is OUR autism. Our own little version of it. The more I talk to other parents on the spectrum, I realize that everyone has their own version. Some seem worse than others, some are barely perceptible. What has helped me is to break down our autism, and analyze why certain aspects bother, while others scarcely register.

Yeah. I like lists. Am a list person.

Thursday, July 8, 2010

Where to start?

It has been 3 years since we started this little adventure. Three years since Isaac was officially diagnosed with ASD, and two years since Olivia was labeled the same. Three years of our family feeling a little off center, a little less then typical.

It is a story I hear all of the time from so many parents in the same little rudderless boat as we. It isn't the H.M.S. Titanic, we aren't exactly going down in the icy waters of disability, but all of this paddling is pretty exhausting. That's how ASD gets ya, especially if it is High Functioning or Aspergers - there is this chance that all will be ok if you just get enough of or get the right kind of therapy.

But which ones? Is there anything out there new or different? What have others experienced, who do they go to and how often? Where do their kids attend school, speech, OT? How has that worked out? What would they recommend as kids flow through the system? How was the first grade, second, high school? How is it to be not so typical in Portland?

So I am getting started on telling our own adventures, and sharing it with anyone who cares to look (or no-one - this is a cheaper option then therapy). And hoping that overtime, other families living with Autism in Portland want to jump in with their own experiences.