Tired

I just want to sleep and sleep and sleep. Three therapists coming to the house today - I'll be at work, so my mother in law will have to handle - plus taking Sophie to preschool. And then an afternoon appointment to the neurologist with Zach. I am not sure how much more I can handle at work. I have little ability to concentrate; all I ever seem to think about are the kids, autism, therapy, etc. I am totally engrossed in this stuff. I thought work might be a good break for me from the craziness, but I think it is just adding to the stress. They have been nothing short of awesome to me throughout this ordeal, I feel they deserve someone who can really produce, and it likely isn't me. *sigh* We could really use the $$ now with the private therapist thing. I want to go back to bed.

Why in Syracuse is ABA a dirty word? An unexpexted visit

Why in Syracuse is ABA a dirty word? OK, so it only feels that way. No - I can actually say I have witnessed people cringe when I mention it. So, I was wondering is this a universal feeling?

And then we went to Rochester to visit Steve's family for a late Christmas a few weekends ago. I said ABA - and lo' and behold, people nodded and said "oh yeah, I know what that is." No dirty looks as if I was about to administer electric shock to my child. In fact Steve's cousin K. a recent graduate of history from UB who is in a temp job until she starts grad school said she was trained and using it. Steve's cousin C. stated that she had used it when she was working with the autistic years ago and saw how effective it was, especially when it was implemented and consistent at home. There are schools out there. People have multiple resources in Rochester.

OK, so back to Syracuse, since I think the 3 hour commute daily to Rochester will likely make me want to beat my head against the steering wheel, and thus, should not be attempted.

What is going on in Syracuse?

I asked the county program director if we were the first parents to request ABA today upon our first face to face, uninvited, unannounced visit to the county's Special Children Services division. The response was "Your the first in two years."

So, yes, no more phone calls. We went to speak to the program coordinator herself, without calling first. I wanted to hear what she had to say for herself, and not through someone else. There was certainly something to the element of surprise. But it wasn't as if she needed preparation - I am sure she has given this speech before. There were a few strange looks when we entered the building, I made sure to where my high heel boots and professional attire - hopefully, at 6'1" with heels I could have some sort of psychological intimidating effect. They didn't know we were just parents, they may have thought we were some sort of certification or oversight personnel. They were very nice to us.

Much like our service coordinator, this program coordinator tried to deflect the conversation to Zach and his upcoming transition to within the school system. I told her that he would not be 3 until October, and I didn't want to see 9 months of no activity until this event. Talking about the future seems to make these people feel better. I also instructed her that I had already begun proceedings with the school district, to which I was told they were pending a report from the Early Intervention office. Yes lady - you guys are the ones holding up the show - not me! I also told her we were scheduled to visit 2 schools within the next few weeks. OKay -can we put this one to bed lady and get back to the issue at hand.

She says: "Blah blah blah - resource limitations, I'll have to check with my boss," and more idle rhetoric that I shouldn't have to bear witness to and isn't my problem. All I could think about is: "You've had 10 years to get this stuff worked out, why isn't it?"

*** WARNING: some censored vulgarities coming your way ****
We went on to exchange stories about what we thought was going on. Steve said not a word. I could only imagine that if he did talk, he would have told the lady something on the order of "stop the b*llsh*t and quit f*ck*ng with my kid's life." Lord knows that is what I was thinking at moments as I tried to stay proactive, positive, congenial, diplomatic, etc. rather than the straight talk approach I would have preferred.

At some point, the coordinator mentioned a name, as if I should know who it was, of a student in Westhill school district, and "too bad I didn't live there instead of West Genesee" blah blah blah. Off to Googleland I go to see who this kid she was talking about is. As I investigate this young gentleman's life, I frequently come across these words: facilitated communication.

Puzzle pieces are starting to fit together, or is it a connect the dots? I hope to figure more of this out and give you my viewpoint in some follow up posts. Stay tuned...

Made for TV and tings

I had this surreal feeling this evening after interviewing a possible ABA therapist; all of the sudden my life felt like a made for TV movie on the Lifetime network. I can be a drama queen at times although I would like to think this isn't a distinct characteristic of mine.

L. showed up at my door today and as I opened the door - I saw this beautiful young woman standing there with a smile. I know this makes no logical sense, but I liked her right away. She was so-o young - and for some reason I loved that! There was lots of energy and vitality to her, and not a lot of excess baggage.

I was a nervous wreck for the interview as I wasn't prepared and have been a total scatter brain as of late. I like to be prepared for things, and this drove me bonkers. Where were my notes and spreadsheets? Perhaps that is why I liked her so much, she seemed as nervous as I am. We talked non stop for 2.5 hours. Steve likely wanted to bat me in the head as he said very little but had to sit there listening to me ramble incessantly.

So Zach interacted with her a bit while she was here. She saw him and exclaimed how cute he is. I knew that whoever met him would think that - so far everyone has commented how lucky we are to have such a cutie, that it would likely make finding therapists a lot easier. Not a nice fact of life, but a real one nonetheless. Anyhow, he said a new word- "Tings" when requesting a snack of "Tings". Very cool - since we really didn't work a lot on it. Maybe he was showing off in front of the hot chick? LOL

Zach has been receiving services for almost 7 months, and for almost 4 months we realized his dx. I want something to start happening NOW. Enough waiting for everyone else to get their act together.

So, she can start immediately and I asked her if we could start Wed. We're on. This doesn't give me much time to verify references, background checks, etc. I know. But I have professional references for her - 2 from professionals in the field, 2 from families she has worked with and will verify as much as I can before she starts. Not to mention, she will only be here when someone else is here. My instincts say she is good - and I can say that my instincts are generally very good. Let's hope I am right.

Yet another blow and Imagination

So, today, a day that many have off as a holiday, I spent with 3 therapy appointments (OK - 1 cancelled and rescheduled for Wednesday) and a special ed. playtime that was a little too busy for my liking because many of us brought extra guests (other children, spouses, etc.) due to the vacation. Zach spent much of the class spinning around in circles, while I consoled Sophie as she didn't understand why none of the children were particularly good at sharing. One boy (maybe Downe's Syndrome) in particular seemed to want everything she was playing with and his parents were not the most attentive to his behavior.

We came home and Sophie insisted on watching Willie Wanka and the Chocolate Factory for the 5th time in 16 hours - yet another surprise gift by a terrific friend who has a lot on her plate with 3 kids under the age of 4 and a husband whose job takes him out of town a lot. We are so lucky to have such great friends.

Sophie's OT, who has been doing a great job with her, had a talk about her recommendations with me today. She believes Sophie is going to continue to require services if she goes to kindergarten. This will likely require a diagnosis of some sort because school districts usually require that in order to provide services (I believe that is a federal law - but am just looking into it.) I am wondering what kind of dx she would receive. The OT seemed to indicate that Sophie is not always the most socially aware - that other children in her class were sometimes confused by her behavior, and that she at times appeared to totally ignore the other children's requests and end up going off the play on her own when she didn't seem to understand the requests for mutual play. This is of course sending off flares to me as someone with a basic understanding of ASD criteria. Could Sophie have some sort of high functioning ASD? You gotta be kidding me. She is very bright, verbal, social, but yet has some obvious and frequent sensory issues, doesn't always appear to hear what I am saying, and doesn't understand some basic social rules or context. The OT will be calling the Special Ed. office in our school district to discuss. I had a brief discussion with Steve when he came home from work tonight, although I didn't mention the vague possibility of ASD, particularly PDD-NOS.

A recent situation has me particularly concerned: recently Sophie got into one of her moods and was very active. I encouraged her to jump into her bean bag chair to get some crashing out of her system and some pseudo-deep pressure. Well, she seemed to get even more spun up. At some point, I lay near the bean bag trying to ensure she wouldn't get hurt. Dumb dumb dumb dumb. Next thing you know she lands on my head, and I felt a crunch on my nose. There was blood everywhere. As I ran to the bathroom and called to Steve for help I thought - "she broke my nose for sure". Steve ran up to the bedroom and saw the blood everywhere. After he checked on me and got me ice, he began the massive cleanup. While cleaning up, Sophie said to Steve "Momma better not have gotten blood on my bean bag." I laugh at this now, but the lack of empathy/sympathy certainly does have me concerned.

Sophie has always had some strange obsessions and behavior. But what kid doesn't? When she was a toddler, her favorite toy were sticks. Anywhere we went she would pick up sticks and play with them. I recall a few neighbors commenting on Sophie and her sticks. She still has a thing for sticks. She evolved it a bit into straws for awhile: we would go to a restaurant and mandate from the waitress as many straws as she could finagle for herself. I remember Sophie insisting from a friends mom on a playdate for an orange straw that she recalled from prior visit. During all these evaluations with Zach we were constantly asked if Zach played with toys appropriately. He never seemed to do really strange things. When I asked them to define what this meant, I was surprised to realize they were describing much of how Sophie plays with her toys. I still think that some of this is bonk and that children who play with toys or non-toy objects as toys are merely more imaginative and creative - and I like it! This is how inventors are born. However, at Church Saturday night, I observed as Sophie separated and rearranged, several times, the monthly missiles with the music issues. She lined them up in 3 different configurations until she settled on one she appeared to like. I had never noticed this behavior before until I thought back to Sophie as a newly walking toddler getting into my pots and pans. I recall how she lined up the tops of my All Clad lids in sorted fashion from smallest to largest at just a bit over a year old over and over again. I remember thinking - wow - that seems sort of advanced or weird or something.

So now, I will likely try and get Sophie into the developmental pediatrician as well. A hearing screening is also likely in order. All because I noticed she wasn't writing well a year ago. *sigh* I thought I might be overzealous because of Zach - but I have had 2 professionals acknowledge that something is going on with her. I am contemplating some dietary interventions for her as well. Right now we are doing an OT brushing technique with joint compression, using chewing tubes to control oral fixations, and supplementing with fish oil. Some of you must be thinking I am a nutcase by now. No harm, no foul is my motto. Sophie is an incredible kid, and most likely most of you who know her are probably thinking that there is nothing going on with her. Alas, I am not overly anxious about her right now, however, I can certainly say that there are many people out there, professional and not, that would likely say she is certainly unique and has some interesting features. Boy do Steve and I have some crazy genes.

Meeting with FEAT

So on Friday we met with someone from the CNY chapter of Families for Effective Treatment of Autism, one day after our meeting with the county to discuss services. B. was kind enough to come to our house on our schedule (she has 3 kids of her own, 1 with ASD) and meet with me. She took a brief look at Zach's Family Individualized Family Service Plan (IFSP). She basically told me we should me that are IFSP looked inadequate to meed the needs of a kid with a dx of ASD, which I knew. She called an advocate to give us advice on what we should request based on our dx and Dr's recommendations.

B. also had references of therapists in the area - most of which I had already contacted. She indicated that one therapist in particular, although not completely certified, would likely be a great match. The best therapist in the area, was already booked (B called her to see if she was interested) and she said the young woman I was to interview on Monday was likely the 2nd best qualified in the area. For some reason, this out of all the news made me feel somewhat relieved. The young woman seemed nice on the phone, and eager! B. indicated that this could be our Bridget as a reference to "Let Me Hear Your Voice" by Catherine Maurice.

The other good news was that through FEAT, we may be able to get some funding assistance. By my calculations, Zach's therapy could cost us as much as $20,000 a year. This is better than I had read about, but still nothing to sneeze at. Anything we can get will be helpful - otherwise kiss my retirement fund bye-bye. Ahh ... who's kidding, I am never gonna retire anyway.

A glimmer of hope...

What helps us stay afloat?

What is helping us deal with our issues?
First off - a call from a fellow more experienced parent of a child with ASD who says she will come to the house to give us a hand.

Second - a call from a girlfriend who wants to come for a visit knowing how nuts things may be around here.

Third - a present - a HUGE unexpected present for Zach that made me cry it was so awesome.
Uncle Ron and Aunt Gail really blew us away with all the great Thomas the Train videos. I am afraid I likely confused the kids as I told Sophie I was happy when she asked me why I was crying.

Fourth - our new washer and dryer - a present from Steve's late Grandma Helen.

Fifth- Joe's safe return from Afghanistan!


Sixth - Zach's terrific smile.

Seventh - Sophie and me getting to spend the day together at her preschool.


Eighth - my mother in law extending her stay and helping us out so much. Plus the unexpected offer on her home that she accepted. Let's say a prayer that the contingency is met (the buyer needs to sell their home.)

Ninth - my mother having us over for dinner of homemade galumpki.

Thanks for all those simple things.

More picture can be found at: http://picasaweb.google.com/boulygirl/Jan15#

Elitism

So, before Zach and Sophie were both diagnosed with disabilities, I was like a lot of folks out there that think things like this will likely never happen to me. My family, not Steve's, had no incidence of anything regarding learning disabilities, mental illness, physical disabilities, let alone retardation and autism. Steve and I were highly educated people, in the sciences nonetheless - PhD, MS, etc. We were into health and fitness, we ate organic foods, and ran 1/2 marathons, moderate alcohol consumption, never touched an illicit drug in our lives. We took supplements and went to the doctors regularly. I avoided mercury laden fish during my pregnancy, and blue veined cheeses, no cold cuts. So how after all this did we end up with two kids with issues?

The fact is, statistics happen. Random genetic things happen. We were elitist to think that it wouldn't be us. The fact is, that we were afraid of autism. A study conducted at Cambridge indicated that among the children of engineers, autism and related conditions are found twice as often as in the general population and was reported in the IEEE magazine I have a subscription to back in 2006, right before Zach's birth. A neighbor of mine once cracked a joke about it to me. Wow - if she new what happened to us, eh?

I have always had a sense of karma, even though I am a Christian. It is really hard for me to understand that bad things happen to good people. I feel guilt for all my sins, and often wonder if they culminated in the system of life to add up to one big kick in the pants.

Some people have remarked that I sound depressed. I want to clear up this issue right now - I am! But not because of Zach's diagnosis. I enjoy Zach very much and have fun with him. Problems in getting him what he needs feel so insurmountable at times, that my energy level is greatly diminished. We are 4 months into realization he has ASD, 7 months into services, and I just want to see some progress. I spend every waking hour (and there are lots of those) trying to figure out what to do next, researching, making phone calls, sending emails, going to appointments, therapy sessions, and trying to maintain some semblance of a normal life for the family. This is not normal. It is a marathon.

I am grateful for the opportunity God gave me to truly sympathize and understand what complete pain and complete love are. I never knew, although I thought I had an idea. I feel for those parents whose children don't smile like Zach does, who don't want to be touched, who hit their heads against walls or floors. Or what about those kids with physical illnesses and disabilities who may have only a short stay here on Earth. Zach is a terrific kid and has joy in his life. That is all any parents should ever really want for their child, anyway. So for those of you worrying about your kids and if they will get into that college with the best program, or will take a medal in the swim meet, or will get the lead in the school play, RELAX. It aint about that stuff in the end, I can assure you. It is ego, it is elitism, it is foolish, and worrying about those things will never bring you the joy in life God intended.