Evaluations

Let Me Out of Here!

by Mary on January 5, 2011

Yesterday we took the J-man over to do the last part of a research study we’ve been participating in. This was the big part – the in-person evaluation.

Sometimes the J-man does OK with formal evaluations, but usually they can be kind of a mess. I think part of the reason is the transitions – someone gives him a task, then if he doesn’t do it in the time period they want, or how they want, or whatever… they take it away! It’s not like at our house, where new toys can sit for weeks before he will even notice them.

They started off rather poorly by making us wait in the lobby about 10 minutes, although we used that time to re-read the little “here’s what’s going to happen” booklet they had sent. The J-man LOVED that book, and especially liked signing “nice” and “nurse” – he would crack up laughing at those words. (BTW, we never actually saw that nice nurse. Maybe it would have helped.) We all went into a little room, and a lady (we’ll call her Connie Chung* because I don’t remember her name) tried to get the J-man to interact with her, while the rest of the adults talked at another table. That didn’t really happen… until everyone else left, and it was just me, the J-man, and Connie. Unfortunately for Connie, she started off with a sorting game of blocks and spoons.

You could just see the J-man light up – THERE ARE BLOCKS HERE!

He spent the entire rest of that session trying to get the blocks. The spoon and block sorting went as follows: he built block towers, and Connie tried to get him to sort. She handed him a spoon, and he put it in the correct box, but when she tried handing him another, he grabbed the handful from her, put them all in the correct box… and went back to building with the blocks. When Connie tried moving to a different task, she ended up putting the blocks away into her little toolkit. The J-man calmly walked around the table, opened her toolkit, and took out the blocks! We had to draw a little schedule, with blocks as the “next activity” to get him to do ANY other tasks. Connie tried getting him to match objects with a picture in a book, but when I told her he did better with words, she tried getting him to match letters… but the letters weren’t objects, it was just “here’s an L… now which one of these looks like that?” It didn’t work, and she wouldn’t move on to WORDS because he wouldn’t do the letters.

Eventually… Connie gave up. Really. Just decided to give up. That right there really described the tone of the whole evaluation to me.

We were sent back to the lobby (there was a playroom, but it was such a disaster area – and I don’t say that lightly considering our house – that the J-man wouldn’t even go in the door!) to wait again, while they set up the room for the other evaluation. This was one specifically for autistic kids. The J-man played with some of their toys, then decided to stack them. Another lady was doing this part of the evaluation. We’ll call her Diane Sawyer (again, no idea what her name really was). Diane did a little better by not having blocks out, but the FUNNIEST part was when she asked me if the J-man would “watch someone do something, then do it himself.” I said, “you mean, imitate?” “Yes,” said Diane. “No, he doesn’t imitate.” She seemed concerned by that. I thought it was a VERY COMMON PART OF AUTISM, but maybe not?

It didn’t take long for the J-man to get frustrated with her, and he asked me for a snack (and maybe a break from Diane!). I briefly mentioned the Sacred Six, and got out his food card. It took a good bit of explaining before the light clicked on, and Diane realized that REALLY, this is only the food he eats. The Sacred Six. They wanted to get him to ask for help, so put 2 of his snacks into containers. He ate some Veggie Straws, then Diane closed the container. He tried to open it, then took it to her to open, but because he didn’t verbalize “help” she refused to open it. So now, you’ve got a hungry stressed out kid, and you’re withholding food. Hello tantrum!

I eventually got him calmed enough to drink, and then he ate more Veggie Straws. Diane asked if I thought he would show them anything… and I said, “Well, he loves to build with blocks.” We had brought his own personal alphabet blocks with us, and he played with them. I pointed out the matching he does with them (not only does he stack blocks with the same letter together, he stacks them in the same orientation, so all the sides match up), and the engineering it takes to build a stack of blocks that high… but again, I felt that Diane, like Connie, had just given up. The J-man sure had.

Tim was still doing the parent questionnaire when we finished at 4PM – we had been there for three hours at that point. Our portion included taking pictures of the J-man’s hands, feet, ears, and face, sometimes with a ruler held up to compare to. Eventually that set him off again, and we ended up with just the J-man and me, sitting in the eval room on the floor. He asked for “pillows” and we cuddled together on the industrial-carpeted floor. I knew he was really stressed, but not quite how much… until he went to sleep. The ONLY time the J-man sleeps during the day is when he is SO overwhelmed that he has to get away, and he has realized that people will leave him alone when he is sleeping.

There was still more stuff to be done, and it was unpleasant at best… but we finished, and left. Thank god.

Tim and I hope that our experiences with studies, and the data collected, may actually mean something someday. We’ll probably enroll the J-man in more studies (ones that involve only observation/evaluation, not so much with the “take this miracle drug” ones). But, not anytime soon. Because at the end of the day I felt emotionally exhausted, and like a bad parent because a) my son was obviously so upset, and b) the study people seemed to think I was lying when I said he COULD do some of their tasks but just wouldn’t in that environment. So that was my part. I also didn’t want to put the J-man through anything like that again. He was overwhelmed by the lack of structure, and kept saying “I want” but then didn’t know how to express that what he wanted was OUT OF THERE.

Maybe that’s something we need to include in his IEP next time.

*One of our “code words” phrases is, when we can’t remember a woman’s name and can’t get past it, “Just call her Connie Chung and move on.” We’re showing our age here a little bit. Do people still know who Connie Chung is?

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Diagnosis Day

by Tim on March 19, 2009

One year ago, we spent that March 19th in shock and in tears, stunned and lost. I can picture every part of that small office and the way I kept gripping and releasing the arm rest of the faux leather couch. I can still see the doctor looking at us, eyes full of understanding, clipboard and notes in his lap. I still remember the calm and kindness in his voice, an even tone but direct and honest and spoken through a chorus of moanful sounds from the J-Man, though I remember few words other than ‘autism’.

My fingers still know how the fabric over Mary’s knee felt as I awkwardly patted her in an uncertain attempt to comfort both her and myself. She was bouncing him up and down trying to calm his overloaded, tired body as he whined, mentally and emotionally exhausted from the evaluation. I remember how I put my flat, left palm across his back – in those days big enough for me to span his entire back – pushing and rubbing in some gesture that lacked any clear purpose other than parental instinct.

I recall thinking, how many times has this doctor had to sit across from parents and tell them this same news? I don’t remember the exact first words out of my mouth after hearing the diagnosis, but I know the meaning behind my question – What do we do now? I wrote down everything he said as if my pen could save us, like maybe I could draw some road to a future we could no longer see.

I remember the plainness of the 70s-era office building and the trees hesitantly coming into bloom outside under a cloudy sky. I can re-feel the sting in my hand from banging my palm on the gear shifter in the car. I can see as much of the way home as the parking lot, but nothing about the drive itself. That road had disappeared too.

I wandered around for a while in our backyard, lost and angry and feeling sorry for myself, probably justifying my self-indulgence by saying over and over how unfair this was to him. I let dread and fear and despair and hopelessness crash through me like terrible waves. I could feel my arms flailing without purpose at everything and nothing, like a man desperately trying not to drown. I remember saying to myself that I was going to kick autism’s ass, not having any idea what that really meant; it was just the first thing that popped into my head.

Then at some point as the clouds yielded a little that afternoon, I could feel something -somewhere right under my sternum – harden like a fist. It didn’t feel like anger or hurt or some odd form of grace. I suppose it was pure, primal resolve. I remember the thought coming to me, He’s the same today as he was yesterday. He is our beloved son and we will do what it takes, even though I had no idea at all what that would mean either.

But on that day, that was enough for me. I went and held him and rocked him and kept saying, everything’s going to be OK, over and over again. It was a mantra at least as much for my benefit as for his, and I still say it often when it’s hard to find any other direction than down.

Things have changed a lot over this past year. My perspective has evolved and grown and in many ways been transformed. But I think I figured out what the point is of observing what I’ll call ‘Diagnosis Day’. We need to remember how we felt. All that hurt and sorrow and anger reminds us of where we started from and how far we’ve come. It helps us to see the same feelings in the eyes of other parents and know how to reach out and comfort them. This is what helps form the foundation of our compassion.

And then there’s remembering that on the morning after the diagnosis, the sun still came up and a new day began, as it has every day since. And he really was just as wonderful and beautiful and perfect as he was the day before, if not even more so, just as he continues to be every day. And the resolve at my core grows anew each day as grace slowly and continually seeps into each crack inside me, bringing with it the love and joy to fill and heal the places that were once raw with hurt and anger and grief.

This morning, I was frustrated and exhausted and stressed and frankly scared about all the challenges and changes that are to come. I’m slowly learning to be OK with this since it’s just part of who we are sometimes, but there are days like today where that’s not easy.

But as I look across the room at Mary smiling and rubbing her hand across her tummy over the new wonder growing inside her, and watching our son laugh and smile and spin and say with pride and conviction one of his newly-discovered words, they help me remember that everything really is going to be OK and that I truly am the luckiest man in the world.

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How Does One Observe ‘Diagnosis Day’?

by Tim on March 17, 2009

We are approaching the first anniversary of the J-Man’s autism diagnosis. It’s hard to believe it’s only a couple of days short of a year now. It seems like one should observe these anniversaries in some fitting way, but honestly I’m not sure what that would look like.

They say you quickly get to where you can’t remember life before your child was born. That I can remember, since being without children for 32 years gave me plenty of time to create a lot of memories. It is harder for me, though, to remember our time with him when our vocabulary was different, pre-diagnosis. Back then, we thought it was something else, or lots of something-elses. We thought a lot of things.

It has been an amazing year full of achievements and fears and celebrations and despair and laughter and joy and everything in between. It’s been a year of many big decisions, a lot of bureaucracy, major transitions, yet more paper, and learning to swim after being thrown into the deep end of a very big pool. Plus, we’re only weeks away from our new baby, and what adventures await us there are impossible to imagine.

But constant throughout – we are so indescribably proud of the J-Man. He has faced every challenge bravely, and he has accomplished things that boggle our minds. He is our greatest teacher and our pure sunshine. Most of all, he is a sweet, kind, loving, perfect soul, and he is our beloved son. He doesn’t need to do anything to impress us; he does that just by being who he is. And nothing can ever change that.

So how does one observe something that is part of our lives every day? Is there even a need to? I don’t know, but to me it does seem important. What would you celebrate on that day that would be different than any other day? We don’t celebrate his achievements only once a year. We don’t wait for just one day a year to renew our commitment to him and to helping other parents and children.

Maybe it’s that we should remember it as a turning point where our perspectives on many things changed forever – perhaps as a reminder to be always mindful of who we are, where we are, where we hope to be, and what he have to do to get there. Perhaps, too, it’s to recall the identity and experience we have in common with a broad and diverse community of people like you with whom we share this journey, and that we all have so much to give and receive from each other.

I’d love to hear from parents and how or whether you mark this day in your year. Feel free to post in the comments.

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What’s Your Autistic Toddler Like Now? (Part 3)

by Tim on March 2, 2009

And welcome finally to Part 3! This is the continuation of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”. I meant to write this sooner, but illness has swept through the Flashlight household and rendered us all pretty useless this week.

If you haven’t already, go back and read Part 1 and Part 2.

I’m calling this group “Moderately Present” as these things are generally more common than not around here, but not as prevalent as the “Significantly Present” group from before. As with the previous posts, some of these are challenges for us and others are just things that are part of our day-to-day life. None of these are meant to be value judgments, just information about what one autistic toddler is like so you can perhaps see similarities in your own children or learn more about how these things are part of another family’s life.

I’ll be dividing this group into two parts. So we’ll finish this up in Part 4 soon.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

And here we go!

Characteristics That Are Moderately Present

Fixation or attachment to a particular object or parts of objects (DSM-IV; hard one to nail down for us) – For some, this manifests itself as obsessive-looking hoarding and organizing of objects. You might also see this as what seems like excessive fascination about a particular object (looking at a particular train for a long time or staring at a ceiling fan) or part of an object (a spinning wheel on a car).

The J-Man is all over the map on this one. It has gotten more noticeable over time, but I wouldn’t call anything he does here a major issue. The object(s)-of-the-day rotate regularly through an array of toys. For the longest time it was wooden blocks. Then it went to pieces of his farm animals puzzle, and then on to flash cards, and then wooden numbers, and then stuffed animals (which was cause for much rejoicing actually!), and then plastic food, and then randomly back through the order, occasionally mixing in some other things.

[click to continue…]

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What’s Your Autistic Toddler Like Now? (Part 2)

by Tim on February 22, 2009

This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

If you haven’t already, go back and read Part 1. If you have, let’s continue on!

Characteristics That Are Significantly Present (continued)

Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.

School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.

He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.

That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.

Continue on with Part 3! [click to continue…]

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What’s Your Autistic Toddler Like Now? (Part 1)

by Tim on February 20, 2009

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all this has been helpful to you and your family.

In celebration of the 1st Anniversary of our blog, I decided to write a multi-part series, revisit that popular post, and update it for what the J-Man is doing now almost 9 months later. The original “What’s Your Autistic Toddler Like?” gave you a snapshot of what an autistic toddler might be like – or at least what ours was like – about three months before his 3rd birthday.

[click to continue…]

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The Clinical Definitions of Autism, Asperger’s, and PDD-NOS

February 19, 2009

As a preamble to the upcoming sequel to “What’s Your Autistic Toddler Like?” (coming very soon!), I thought we should first go straight to the source in which the diagnoses are defined – the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. (Technically, it’s DSM-IV-TR, where TR stands for ‘text revision’, [...]

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From Research Studies to Wanton Self-Reflection

October 19, 2008

If your child is somewhere on the autism spectrum and you live reasonably near a university, it’s not unusual to get notices about research studies you can participate in. In our case, we live about 45 minutes away from UNC-Chapel Hill – home of TEACCH and all manner of ASD resources – so we receive [...]

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