Saturday, February 20, 2010

the diagnosis

So...I'll start with the gist, and then go through the details. I figure not everyone will be interested in all the details, but they'll be here for me, and for anyone else who might wonder what such an evaluation entails.

Jack has been diagnosed with classic autism. Not Asperger's. Not PDD. I'm still learning my way around all the labels, but apparently his language skills and other delays are too impaired for a diagnosis of Asperger's. PPD-NOS is a child who is more impaired than one with Asperger's, but doesn't have all the criteria for classic autism. He is considered to be on the higher-functioning side, as far as autism goes, because he can and does speak in complete sentences and has for some time now. There are further degrees of impairment, like Rett Syndrome and Childhood Disintegrative Disorder. These are further on down the autism scale, more rare and very devastating. could always be worse I guess. He is not as impaired as this guy...

...poor Rain Man. I wonder now what his prognosis would have been if he hadn't been institutionalized?

I have put off this long post. I'm tired. My brain is tired. Jack spent yesterday very strung-out and miserable, so I'm sure he's feeling it too. Poor John has had to work all weekend, I can't imagine having to deal with work after the roller coaster we've been on. Other than a midwife visit and a trip to pick up milk and peanut butter, I have gotten nothing done for two days other than eating/sleeping/breathing autism. Tomorrow I vow to do none of that. Life must go on here, my emotions need a little break, and I need to deal with some things around the house and spend time with the children. On Monday I will have more phone calls to make and decisions to ponder, and I will for some time to come I imagine, but all of that can sit until Monday.

So, now I'll run through the events of that day. We arrived at the clinic a bit early, around 7:30. We weren't sure of the exact location and didn't know what the parking situation would be, so we got an early start. We checked in and gave them our paperwork and they gave us...more paperwork! haha! At least three times that day I was given more paperwork that essentially asked, in one form or another, the same questions as the original paperwork. My current theory is that they were testing the sanity of the mother this way. Have you ever taken a written psychiatric exam? They ask the same questions several times throughout the exam, looking for inconsistencies in your answers. That's what this felt like. So, I sat down with these forms and Jack set off to play in the very cute, child-friendly waiting room filled with fun things to do and a steady loop of Disney movies on the TV. The nurse practitioner called Jack back to be weighed and measured and all of that good stuff, and then we were led back to an itty bitty conference room packed with a table, five chairs, and a kid's table with a few toys on it. We met with the developmental pediatrician, his nurse, and a student of some kind (being a teaching hospital and all). They went over the paperwork we had filled out, asking for clarification and more details on some things. The nurse occasionally made observations about Jack to the doctor about certain things, the way he said certain things, the posturing of his hands, etc. I quickly got the impression that we had missed a lot, and also that these people could probably pick autistic kids out of the Wal-mart check out line. Going through all of the paperwork took some time, and Jack got a bit restless. The nurse pulled him on her lap, and he allowed this for a time. She was very lively and sweet, and he seemed to take to her. Finally, the nurse-practitioner came in and the doctor told her that we would need to see quite a few more people because we were "complex" (not a good sign, I figured). We were sent back out to the waiting room until they could figure out the rest of the day for us. Apparently there had to be some schedule juggling so they could try to fit us in to see the people they wanted us to see. Jack was already getting a bit bored with the waiting room. I broke out his snack and water bottle, and I called home at this point and gave an update to my mom, and she gave me an update on the other kids. Tess, she said, had woken up very upset and inconsolable. She wanted nothing to do with Meme or Maria and kept saying, "NO, NO! MAMA!" I ached to be home with her, my sweet girl. She'd never been away from me for anything longer than a grocery shopping trip.

After some time, a woman came out to get Jack for a speech evaluation. She wanted to test him alone, and after a little cajoling he was ok with that. She brought him back about 20 minutes or so later, and Jack announced he was ready to go home. When that didn't happen, he started to get more and more agitated. He was already feeling the strain of the day. He wasn't interested in the movie, and he wanted nothing to do with the toys or books I brought. John found a vending machine and bought some cookies to try and keep him happy for a bit. Then he took him for a short walk around the sidewalk in front of the building. Finally, they called Jack and I back for the ADOS...the autism diagnostic observation schedule. We were led into a room with the nurse, a therapist, and a couple of tables. There were a few toys on the floor and a few more on a small table. I soon recognized the protocol. It's shown on this website, in the video glossary. First, she just observed Jack as he zoomed in on the toys. I sat on a couch and tried to be unobtrusive. I figured they would want it that way. They were looking to see how he played with the toys, which ones he was drawn to, how he played with them, if he had the social development to show them to one of us and interact with the people in the room at all, that kind of thing. He quickly sat on the floor and fixated on this jukebox, repeatedly pushing the buttons in order, A-B-C-D, 1-2-3-4, A-B-C-D, 1-2-3-4, on and on and on. "Jack!" the therapist said. A-B-C-D, 1-2-3-4. "JACK!" she said, louder. After a few attempts, he finally tuned her in and looked up. "Would you like to see the toys on the table?" He went over to the table and picked up a wooden block covered with sandpaper and licked it. Ick. Then he picked up a pop up toy similar to this one. At first he forcibly pulled the characters out, but soon he figured out the knobs and levers and started working them. One after another, from left to right, over and over. At one point, he picked up a small board book, a simple one with pictures of vehicles and one word on each page. He quickly flipped through the book and read it aloud softly, then went back to the pop up toy. At this point, I became aware of a deep voice murmuring close to my head and realized that there was an observational window behind the couch I was sitting on. The doctor, and someone else, was watching. It all felt very police line-up. I suddenly felt a bit self-conscious, but Jack was oblivious. The therapist had gotten up and started to abruptly gather the toys without comment and put them in a large file drawer. She left only the book. Jack got up and followed her and tried to open the drawer, but she blocked it from opening and told him to look at the book. I got the impression she was testing how he reacted to transitioning, or to being frustrated maybe. Jack is a pretty mellow guy most of the time though, and he didn't react much. There was a sheet covered table in the corner and she began to bring some things out from under the sheet one at a time...a toy frog that she made ribbit and hop, then handed it to Jack to see if he would imitate her. He did. Then a container of bubble solution and a squeeze toy that blew bubbles. He imitated her here too, and also chased and popped bubbles. Then she handed the toy to him, but blocked his access to the bubble solution with her hand. She was wanting to see if how he would get her to move her hand. He poked her hand a few times with the toy. Then he asked for more, and she smiled and said yes and let him have a dip. She repeated this a couple of times, and he got better, asking for more each time. She put the bubbles away and brought out a balloon. She blew it up, slowly and dramatically, and said, "Ready! Set! Go!" and let it fly around the room. He loved that, and squealed and chased down the balloon. He went to put it in his mouth (Ick again!) and she intercepted it and did it again a couple of times. By the end, Jack was saying "Ready! Set! Go!" himself, which I think was what they were looking for. Finally, she brought out a baby doll, some play dishes, a few tinker toy rods, and some playdough. She sat at the table and said they were going to have a birthday party for the baby. She put the play dough on a plate and stuck the sticks into it for candles, and she set the table with a few dishes. They pretended to blow out the candles, which Jack liked, and then she asked Jack to give the baby some cake, kind of showing how to cut the cake with the utensils. Jack poked and made some cutting into the cake, but he wouldn't feed the baby. She poured some "juice" for the baby, but Jack wasn't interested in that either. He did try to eat some play dough. Ick. She said, "Oh no!" several times during the course of the session, and I was surprised that Jack had no reaction. Then, she said it again, and he fell apart, Rain Man style. It wasn't pretty. She was apologetic, she'd forgotten about his little weirdness with that phrase. Then she accidentally said it again and was super horrified with herself, apologizing and saying it was part of the script and she'd forgotten, and the nurse and I fell into near hysterics while I tried to soothe a very strung out Jack. It was all just so nuts. We were led back out to the waiting room where John was waiting. And we waited some more. A new nurse came in, this one through the front door of the clinic and not somewhere in the back, and asked to talk to me for a minute and asked if we would be willing to participate in a research project should Jack be diagnosed with autism. They were trying to get 300 kids to participate, and it was basically a periodic survey to find out what interventions, traditional or otherwise, that parents were pursuing, what they thought was and wasn't working, and using this information to help decide where research dollars should be spent. I said yes, of course, who wouldn't want more money for autism research? and was rewarded with more paperwork. Haha! I told John, "They are going to tell us he's autistic. And she knows it. She wouldn't have wasted her time coming over here to give us this and talk to us if she didn't know that." I filled it out, and Jack got progressively more irritated and restless. I went to the front desk and asked if we could go ahead and take a break for lunch, and the nurse came out and told us to go ahead. The IQ testing was next, and he would do better if he got a break.

We found a pizza place and had a nice break and returned around 1pm. Jack had fallen asleep in the van, so he even managed a little nap. Neither he nor I had slept well in the hotel. After some more waiting in what now felt like a wretched and un-child friendly waiting room, a different therapist came out and got Jack for the IQ testing. She also wanted to test him alone, and he went along willingly enough when she said she had some games for him to play. I was very, very sleepy at this point and so very much was ready to be done. Jack was returned to us after a while and we waited some more, and eventually we were called back to another conference room, a bit bigger than the one we had started the day in. Waiting there was the pediatrician, the nurse practitioner, the nurse, and the two therapists he had seen. The doctor said that Jack fit the criteria for an autism diagnosis. They went over the results with us. Immature play skills, poor social interaction, odd speech patterns, sensory issues...his IQ tested in the "borderline disability" range for both verbal and non-verbal IQ. The therapist was apologetic when she told us this, because everyone also knew about his special abilities as well, but the bottom line is that he didn't test well. An example she gave was showing him a picture of an envelope with the stamp in the wrong place and asking him what was "silly" with that picture. He couldn't answer appropriately. But he did read the name and address, written in cursive, on the front of the envelope. That kind of thing. And he would become fixated on a certain word and give it over and over again as the answer to the questions. She said that with some therapy to improve his attention and communication skills he would likely test much better. We were given a slew of printed information about autism and some phone numbers to take with us. The doctor gave us strict instructions to "start making calls tomorrow" to get therapy started for him. He also gave us some printouts with information we could use to help with his sleeping and pooping issues, and the number of a psychologist in our area we could try if those suggestions didn't work. This whole time, Jack was sitting snuggled up with his new nurse friend on the couch. They had become buddies. He really did like her. The doctor shook our hands and said we needed to come back in a year to be re-evaluated, and everyone but the nurses filed out. Jack's favorite was toting him around the room and asking him if he wanted to go home with her. "OK," he said. The other nurse said he was just the darling of the office. I'm imagining a lot of the kids they get are much less receptive to interacting with strangers. Jack, autistic or no, is a sweet and loving child once he warms up. And boy, he warmed up to her! :)

The nurse in charge of the research program came back in and reviewed our contact information with us and said if it was ok we might be contacted about other autism research projects, which we could choose to participate in or not. Then we had one last stop to make. We left the clinic and went to the children's hospital around the corner to have some blood drawn for genetic testing. This was the low point of the day. Jack had not had blood drawn since he was a baby. Knowing Jack and how he would react, we didn't prepare him for it. It really would have made it worse, if that's possible. Even though I was holding him on my lap and holding him as best I could, he fought and kicked the phlebotomist and blew the vein, so she had to stick him again, this time on an exam table with both John and I holding him down. He was unbelievably hysterical. It was terrible. But we were done. It was well after 4pm at this point, and we were glad to get in the van and make the long drive home. Jack was very restless on the drive back and very anxious to get there. We got home after 8pm and I was accosted by the other children, Kain and Maria jabbering a hundred miles an hour, filling me in on all I had missed, and a happy Tess in my arms. The first day back was rough. I slept badly, my typical 3rd trimester insomnia aggravated by my spinning brain. I felt like I kept waking up all night long, my brain whirling with all that had happened. Jack was very restless too, and very cranky all the next day. It's like he knew what had happened and acted more autistic than ever all day long. But we all slept better last night, and he seems more like himself today. I hope this all makes sense. I know it's long. I'm not even going to proofread it or anything, just post it and be done. I'm worn out and have dinner to get on the table, and I'm ready to start my little "autism Sabbath" now. :) Thank you all for following the beginning of our journey!


Angela M. said...

I'm off to Mass in 15 minutes - offering up my Communion for you.

Anonymous said...

HI Mel

I read your blog a lot.

I have a boy with classic autism as well bu tI think your son speaks better than mine.

I read your post on the 4real special blessing part of the forum. My advice is pure and simple, do what yo think is best for your son.

Don't worry about what anyone thinks such as MILs. Who cares yo are the one in for th long haul not them. Homeschooling might work well for him as so many people on the autism spectrum have anxiety. y sn is in a speicla school and has done so much better than than his last placement what a disaster. Slwoy bu surely he is leanring to ready and write form th structure and quiet and teacher. However if things get bead I would home school if it would help him. He get a lot o f work done on him at home by myself and hiusban da a lady who is very expert in autism, tutors him.

So once again do what you think is best for you, him and your family.

Two blogs I read that have good ideas fo kid with autism

You will also find wonderful resources online that you can usee
This lady is Australian like myself and she has two kids wiht learning needs and several of her entries link to many useful resources for special needs kids like workboxes

Anonymous said...

Please excuse the typos Mel, I am tired and my spell checker is hopeless

Jenny said...

Thank you for sharing and know that I will be praying for you as you begin this journey.

Kelly said...

Geez Melanie - I've been a little out of things the last couple of months because of health problems and such, I had no idea all of this was going on. [Well, I knew you kind of suspected, but didn't know it had gotten this far].

What an unbelievable day! Any kid would have been a basket case getting a blood draw [and after such a long, exhausting day too!].

God bless you - you are in my prayers. So is your son and your whole family. {{HUGS}}


scmom (Barbara) said...

Just read the first few paragraphs -- will be back later to read the rest. You have my prayers. I'm sure your "new normal" will be better in some ways with a diagnosis, but you have a lot to think about. Look to the Blessed Virgin -- she will help you find the way.

Denise said...

Hi Melanie!
I read every one of the posts, parts 1, 2, 3...and hung on every word you wrote. I'm going back through and will click into some links to see more that you shared throughout. It's so good "to know" and now you do and God has blessed you in a special way with a very special little man in your lives!
In our prayers, Denise

scmom (Barbara) said...

I finally was able to come back and read your whole post. And I have just one bit of advice (because I'm an old mom, and I feel like I can ;-) ). It's good that you have a diagnosis because now you have tools that you can use to help Jack. But, don't make long-term assumptions about him based on what you've learned recently. Jack is still very, very young.

When my now-18 year old son was four years old, almost five, we, too, saw "something different." We took him to a ped psychiatrist who did lots of tests, and then she sat us down and told us he was mentally retarded. That day, my little boy "died." The son I dreamed for was gone -- I thought.

Fortunately, therapists we worked with gave us great hope and we later learned that IQ tests are not that reliable, and what he really had were some serious fine motor delays and some communication delays.

Long story short, he now attends and academically-challenging high school, is a member of the National Honor Society, has many friends and enjoys life. He is not the kid who I thought was going to wipe trays at Wendy's for his entire adult life (not that there's anything wrong with that as a job, but you know what I mean). He is different still, and we don't know why, but he's not the child that was diagnosed mentally retarded.

So let Jack blossom into the kid he is, with the help of your tools, and just let him be the most he can be. I promise, you'll be pleasantly surprised.

God bless -- you have a bead on my daily rosary.

Anonymous said...

Melanie, thank you for sharing your journey with Jack. We're about to start the same one with my 3 year old son. I'm anxious about his future, but your posts have given me courage.

Barbara, your comment was very lovely.


mel said...

Thank you, everyone, for the prayers and resources. Barbara, I'm so glad to hear about your son. He sounds quite a lot like my dh, actually,,,he was also diagnosed as "retarded" as a preschooler and we wonder if he didn't actually have asperger's or something. Anyway, he's very bright, actually, and finished college (twice, lol), but is definitely, ah, quirky in a lot of ways. :)