Brent Nyitray
Fairlington Blade
Let the mutherfuker burn!
jnc4p
Kevin S. Willis
Michigoose
lmsinca
markinaustin
Arcanaut
novahockey
quarterback
ScottC
yellojktCase closed
I was certain in my youth
God knows
Had my scientfiic proof
And in my mind
I thought I saw the truth
I never looked beyond my lenses
Never saw that it was you
I mentioned that I am a father of children with autism in my introductory post. I thought I might write a little about that. Both of my sons have a diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified. PDD NOS is a bit of a mouthful, so I like the new term—atypical autism. AA is a lot easier to say, even if it does give rise to some amusing images. Having twins meant that one saved the other who then returned the favor. We’ve used Primo and Secondo, characters from the movie Big Night, as their pseudonyms, so I’ll keep to that.
I’m a let them get dirty, don’t sweat it if your child doesn’t hit the milestone from What to Expect kinduva guy. Kids seemed to thrive pre-Dr. Spock, so let them grow at their own pace. Still, at some point you realize on a deep level that something’s not quite right. We brought up our concerns at their 2 year check-up and got some reassurance. To my everlasting shame, I held back on evaluation. Most of the time, it’s not a big deal. That isn’t the case for my sons.
It was in their second year of life when our concerns grew serious. I’m tempted to say it’s like a stomach ache that doesn’t go away. That happened to the husband of a friend of mine. His stomach troubles turned out to be pancreatic cancer. He didn’t make it. Our children are seen at an excellent pediatric practice. There’s a developmental specialist every other Friday. Once those concerns wouldn’t go away, we made an appointment with her. Incidentally, there’s no coverage for that initial screening. $100 is no big deal for us, but it’s gotta be hard for parents who are just getting by. We quickly got the word that he’s delayed and possibly autistic. I can’t say as it was a shock at that moment.
Out of the Question
Can’t catch the wind inside my fist
No, it’s Out of the Question.
Try to trap you and I know I missed
Out of the Question
You’re closer than the air I breathe
but Out of the Question
and Into the Mystery
I do not know if getting a diagnosis four or five months earlier would have made a difference. Here’s two things that a parent of a developmentally delayed child learns quickly. Every second counts. It is important to get therapy yesterday. Hell, do it in six months ago! Here’s the other thing that you’ll learn. You’ll be waiting months for an appointment. Following that initial appointment, we had a few words of advice, whatever books we could find. We were on our own for a few months, but I think they made a difference. The big point was to engage Secondo. Get him out of his world and into ours.
I wound up inventing a game they still love, though it’s harder on my back now. Hug, beso (kiss), blast-off. The idea being that Primo or Secondo runs from the kitchen to me sitting on the sofa. I give him a big hug, then a kiss, then toss him onto the sofa. It’s a lot easier with a 2 year old than a kindergartener! That summer was pretty much a matter of teaching what should come naturally. It felt great to finally be doing something.
We then got in line. We were told to contact Dr. Jean Thomas, who was head of psychiatry at Childrens National Hosptial. Trust me folks, if you’re told by a professional that this is the specialist you should see, you get in line. It doesn’t hurt that Dr. Thomas works at a premier hospital for pediatric care. At one point, I’d actually given up on getting through with them. The gates may not be barred, my friends, but they’re sticky. Fortunately, Dr. Thomas left a message with us and we got through to Intake. One also leans the magic words to get past the gatekeepers.
My heart
Brings me to my knees
There’s God
Forest before the trees
Move me
Like the wind will stir the leaves
I give way to the Mystery
Like the Branches in the breeze
The initial evaluation was an interesting experience. You have two terrified parents and a clueless toddler. The team consisted of Dr. Thomas, a colleague, and what I presume were a couple of interns. One problem was that we had to sit in the waiting room for a better part of an hour. Secondo wasn’t at his best by then, which may not have been a bad thing. At the end of it all, we got the news that he had autism and to make a follow-up appointment. My wife broke down upon getting the news. Not that she was crushed by the news, but it was almost a relief to finally have it verified. The hospital isn’t that far from where she used to work frequently, so I dropped her and Secondo off on my way back to work. I’m not sure how I felt that day. I knew it would be a long journey, just didn’t know the path.
We had a follow-up appointment a couple of weeks later. Dr. Thomas introduced us to Dr. Bhavin Dave (he’s Indian). Dr. Dave had interned at Kennedy Krieger (another fine institution in this area) and was about to take up the position of head of Pediatric Psychiatry. Here’s a tough choice. You’re directed to this one person. Mind you, we knew relatively little about the developmental specialist. Still, when you’re clueless and told this is THE PERSON, it’s a tough decision. t was a difficult choice at the time, but we figured it’d be good to get in on the ground floor. We were one of his first patients. He’s become a valued family friend. Early on, I think it was more about keeping my wife and I in the game than counseling Secondo.
And I’m Out of the Question
Can’t catch the wind inside my fist
No, it’s Out of the Question.
Try to trap you and I know I missed
Out of the Question.
You’re closer than the air I breathe
but Out of the Question.
and Into the Mystery
In parallel with this track, I learned a lot about the Americans with Disabilities Act. I’m not necessarily a small government guy (big shock there), but I have always been deeply skeptical of a federal role in education. Some of this comes from having a mother in the primary system—she’s a semi retired speech therapist. It seemed like massive amounts of paperwork for modest amounts of funding. Education has always seemed like a local responsibility to me.
Well, my sons would not be thriving in kindergarten were it not for federal interference in education. To be exact, something called Child Find. It’s a system designed to detect developmentally delayed children and get them services so that they can thrive. My wife and I are pretty well prepared for educating kids. I have a BA in Physics and Mathematics and a PhD in Condensed Matter Physics . My wife actually trained for elementary education before finding her calling as an interpreter. [Bachelor’s at Redmond in Education and a Masters in Translation and Interpretation from the Monterey Institute for International Studies). I’m not throwing the degrees out there to brag. Rather to note that we’re two highly educated parents who are well prepared for the task of getting our children ready. And we didn’t have a fucking clue what we were getting into.
I think we could have cobbled together something, but it wouldn’t have been close to what the “system” did for them. I’m overwhelmed by the care given to my sons. And yeah, it’s because of that interfering federal government. We probably could have worked out something. We both make good money and probably afford specialized schooling. Providing we had a clue what to get. My best friend at work has a son on the spectrum. They didn’t realize his needs until he was hitting kindergarten and dealt with a serious quack. Then I think about parents of delayed kids who couldn’t afford expensive services and specialized education. There was a story in the Post a few years about a woman whose son was “cured” of autism. They went through enormous stress and bankruptcy. How the hell could a family of limited means thread this gauntlet?
OK. End of political sermon. This is one case where I came in general agreement with small government conservatives. Then I saw what effective government could do. It opened my eyes.
Truth is there for finding
But the logic that’s involved.
It’s a mystery unwinding
Not a problem to be solved
I have twin sons. To my thinking, they saved each other. We picked up on Secondo’s delays a lot faster because of direct comparison with Primo. At the point when Primo’s language took off, Secondo seemed to plateau. We pushed for an evaluation earlier than I think we would have had it not been for the comparison. Primo helped to save Secondo. Secondo later returned the favor.
Coming into their second year of life, we had a family friend caring for them in our home. We got Secondo into a pre-K program for developmentally delayed children. It seemed unfair for Primo to stay at home on his own, so we enrolled him in the neighborhood preschool. I think it was two or three days a week, several days a week.
Now, Primo is brilliant. I know it’s natural for a dad to brag, but I don’t know of many kindergarteners that understand exponents. [I’m not kidding. He wrote 6 squared and I assumed that he’d seen it somewhere. He informed me that it meant 6 times 6. OMG.] He was an early reader and has been obsessed with symbols from an early age. We assumed that we had a very bright boy, clueless to the fact that wasn’t all that was going on.
In the first week at the neighborhood preschool, the teacher had concerns. Primo was the old child in his class and was totally freaked out. He’d obsess on the calendar. He wouldn’t join in circle time. He eventually got to the point where he would be willing to sit on a little chair outside the circle. By now we were “pros” at the system and so called Child Find. The plan was that he would continue at the neighborhood preschool and go to the special needs program on other days of the week.
I got a call in August two years ago. They asked why we were going with the morning program. It was mainly to try and match the schedules of the special needs program and the regular preschool I was told that Secondo could continue with his previous teacher (yay!) and asked if we’d be interested in enrolling Primo in a new class that would be half developmentally delayed children and half “peer models”. Yay!!!!!
Out of the Question
The wind inside my fist
No, it’s out of the Question.
Try to trap you and I know I missed
Out of the Question.
You’re closer than the air I breathe
But out of the Question.
And Into the Mystery
Since then, Primo spent 2 years in Bridget Mancke’s class and Secondo joined him the following year. It is overwhelming to me how far they have come. It is not easy raising kids with autism. I want to post about that at a later date. I figured that the story of getting into the system was enough for one.
My kids are in kindergarten now and I think it’s going OK. We’ve had some relapses related to potty training, but I think we’ve got it under control. Other matters are really tough right now. Still, they’re in regular classes and thriving. I’ll take it for now and tell you about day to day at a later date.
Oh yeah, you might be wondering why I keep lapsing into verse. The lyrics are from a song by David Wilcox, Into the Mystery. I was introduced to David Wilcox by my wife almost ten years ago. We’ve seen him perform three or four times. I was searching for the right metaphor and then I realized that David had it right ten years ago. I’m almost 6 years Into the Mystery. It’s a rewarding journey, but oh can it be tough.
Update: thanks to whoever (Kevin?) fixed the link. I also meant to add a picture. This was taken this past summer during their annual Costa Rica vacation. You talkin’ to me?
BB
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All Things in Moderation 
I love your stories about the boys. I've met them and can envision their progress as you write. I hope you will write about the "other matters are tough" part later, as I will be looking forward to it.
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Absolutely generous of you to post this. Life is full of so many unexpected ways to find our hearts broken with love.
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What a wonderful post. Thank you, very much. I'm definitely in the "let them grown at their own pace" mold and have little doubt that, if either of my children had been autistic, we probably would have been slow to diagnose (at least, if I had anything to do with it). I have thoughts about small government conservatism, but I'll share them later. I have a day of doctors and dentists appointments ahead! So, I'm going to be out of pocket most of the day. If I can't get to the Bits and Pieces post, someone, please fill in. Again, an amazing post. Thank you.
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Wow…that was an amazing post. As a soon to be father, the brother and brother-in-law of two elementary school teacher one of whom specializes in teaching autistic children and as a former medical malpractice attorney who regularly encountered children with cerebral palsy, I have a particular interest in stories like these. That you relayed your story in such a masterful way, full of honest tenderness and frustration makes it all the more valuable. Thanks again.
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What a beautifully written diary FB. I for one will be greatly interested in whatever glimpse you give us into your life with your sons. Life hands out both mysteries and challenges, what we do with those is what connects us to one another.I heard someone complaining the other day about education for the developmentally disabled and I thought you really have no clue what you're talking about. BTW, it wasn't a conservative but a liberal doing the complaining. It's about realizing potential and fitting into a society that sometimes places over-sized value on "normal" attributes.Our oldest daughter is dyslexic and while it was a completely different challenge than the one you and your wife are facing, we too thank the educational system, both state and federal, for the research and solutions we utilized in those early years.
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Beautifully expressed, Paul. Thanks! Looking forward to more.
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Thank you so much for sharing with us. I, too, have twin boys – four yrs old. We've been fortunate that, despite being born 8 weeks early, the only issue we've had has been some mild speech delays for which they receive therapy a couple of times a week. Even this, though, was intimidating to go through -an initial misdiagnosis, evaluation after evaluation, meetings and more meetings to determine eligibility for programs, agonizing over public v. private therapy, – I feel for what you must've had to go through.We eventually opted to enroll our sons in therapy through the local public school system (they're eligible for free services starting from the age of three). The school district runs a school specifically aimed at special needs preschool children (they also have a few headstart classes there as well as several prek classes open to the general public) which is where we started therapy. I can remember sitting in the waiting room waiting for my sons to get through therapy and watching parents with their special needs children coming in for evaluation. Many, many times the parents were obviously on the lower side of the income scale and often they spoke little to no English. I always wondered how families like these would get the services they needed without public support. This, I always thought, was government at it's best.
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Thanks for sharing that!
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Thanks, FB. Like Mark, I look forward to your future posts about Primo and Secondo.
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Great post — thank you for sharing. I had a neighbor whose youngest son has some form of autism. I recall talking to her about how she navigated the school system and supplemented with private therapy and the like. She commented that in hindsight the system was actual better for such kids, as it got them off the "assembly line" mentality of the rest of the system and got him the individual instruction/care he need. Is that something you've notice or experienced? It appears to me that the individualized attention is the key here. She wished it worked that well for her older son, who was neither a special needs kid nor an "honors" or "G&T" kid (gifted and talented .. always hated label).
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What a beautiful post, Paul, both the writing and the story you've told. You and your wife are clearly doing an amazing job and raising a couple of wonderful kids. There is a large autism study here at the U and I've attended some interesting lab meetings about the project (we're starting to tease out some of the genetics links). Have you ever read the book Send in the Idiots by Kamran Nazeer? It's a book about autism written by people who are autistic, and it's one of the most fascinating books I've read in a long time; I think you'd enjoy it.Thanks so much for this post!
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Hi all,Thanks for all of your kind comments. I'm lucky in that we've had great working relationships with the special needs teachers and have had understanding teachers in the general ed classes. Both are doing really well academically. I'm also driven to distraction, but that's one for another post. And I promise to make it.I should note that I think the way ADA is handled illustrates the best of federal intervention. Parents of delayed kids have rights and there was a clear appeals process that we never needed to use. Beyond that and funding, it is all done through the localities. My sons have been in the Alexandria City Public Schools, not some federal program. Works for me.I'd also give a shout out to United Healthcare. Other than occasional paperwork problems, we've had no troubles with coverage. That amounts to about $100 every month for appointments with Dr. Dave. The only frustration I encountered was when we got billed for three appointments. Seems that Childrens National bills quarterly and so we didn't learn we needed a reauthorization until it had expired. That was fortunately straightened out.Cat – twins are a lot of fun. We were lucky in that Primo and Secondo went to full term. Well, for twins. I think they were both breech by the end and so we went with a scheduled C-section. They would share their late grandfather's birthday, except it fell on a Sunday. Goose – I hadn't heard of that one, but oh my have I read a LOT of books. Most are by parents, but there's some pretty good ones from the other end. Look At Me was writen by the brother of the writer of Running with Scissors. He was diagnosed with Asperger's as an adult and has an interesting tale to tell. He designed a lot of the funky guitars for Ace Frehley of KISS.BB
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