Sunday, February 28, 2010

A spring is springing daybook

Outside my is dark. I'm writing this daybook on Sunday night instead of Monday morning, because I'm having an "inservice day" tomorrow. :) I asked John for four of his days off between now and when the baby arrives to get some things done around here. Tomorrow is my first one, and I'm planning to spend zero time on the computer to make the most of it!

I am hearing...Caillou on for Jack, John rustling the Sunday paper. Kain is coughing, when he's not complaining about having to do his zone pick-up.

I am thinking...that this baby still seems so surreal to me most of the time. But sometimes not. Sometimes I suddenly picture little curled up limbs and a soft, sweet-smelling head and can't believe we will have a new little person here in just a few weeks.

I am thankful for...options. I'm glad I have the options that I do for Jack. If I had to work, as I have in the past, homeschooling him wouldn't even be something we could consider. Also, for speedy ER's. Tess dislocated her elbow Friday night! Maria was playing with her on our bed and grabbed her by the arm to pull her towards her, and it popped out. It was terrible. :( But it could have been a lot worse. For one thing, John was off of work, so that helped. And the ER was insanely empty for a Friday night. They had us back in a room in a few minutes, the doctor walked in and popped it back into place before we even knew what he was doing, we got an xray to make sure it was ok, and we were sent on our way, one hour and $100 co-payment later. I barely had time to be embarassed that Tess desperately needed a bath or that I realized too late that my white shirt was stained with coffee.

I am wearing... gray sweat pants and a teal green maternity shirt, socks and sneakers. I had a maternity skirt on for mass, but all my maternity pants/skirts are terribly uncomfortable now. I may spend the rest of my pregnancy in pajamas.

We are currently reading...Kain and I are finishing On the Shores of Silver Lake. Maria is still reading the Regina Doman books. Kain is reading Story of the World 3. Tessie loves "The Very Lonely Firefly" right now and her newest word is "Fiefly".

I am praying...for discernment for our coming school year.

Latest on the babies...Tess also says, "Pies!", which means "Suprise!", and many other new words. She's at the stage of picking up words daily, including a couple of new sentences like, "It's a ball." and "Where'd it go?"
Little Honey Five is now 34 weeks along! Yikes! And bigger, for sure...he's moving less, and when he does really get to moving it almost hurts. I can tell he must be getting cramped in there!

From the kitchen... Oh my goodness. I'm doing good just to get dinner on the table lately. I'm tired. I would like to make some pretzels with the kids one day this week. I have no freezer meals planned for this week and made none last week either. I'm running out of steam.

Around the house...well, there's my work day tomorrow. I'm planning to finish it finally finishing the schoolroom and purging the toy closet. I also plan to start working on organizing/purging the boxes of outgrown clothes upstairs and having the baby clothes easy to find in a few weeks.

In the learning room...Survival mode there too. Kain is still at day treatment. I'm mostly focused on Maria right now and getting as much school work done with her as I can before my due date arrives.

In the's time to start getting seedlings going,but I don't think I'm going to do much of that kind of thing this year. I was going to, but then I decided to be realistic here. I've got a baby arriving in April, and therapies to get started with Jack, and I have a feeling we will be working on rhythms around the house a lot this summer. I will probably just plant a few tomatoes this year. There are crocuses and daffodils starting to come up in the flower beds out front, and buds starting to form on the forsythia bushes. I'm too excited about the forsythia. I bought three teeny bushes on clearance for $5 a piece at the end of last spring. They've grown like crazy, but I've never seen them bloom yet!

Plans for the rest of the addition to my work day tomorrow, I need to make a stupid doctor's appointment. This is so nuts, but a while back I got a piece of glass or something in my foot, I don't even know what,,,I didn't feel it when it happened so I never saw what it was. Anyway, I was waiting to see if it would work it's way out, and it didn't. Then right after that was when we had the whole trip to the children's hospital for Jack, and I never have done anything about it. It really hurts, whatever it is. So, now I have to go to the doctor and have this thing cut out of my foot. Maria has extra Irish dance practices/performances most of the month...St. Patrick's Day you know. Co-op on Thursday, it's pajama/pancake breakfast day there. And I have a midwife appointment on Friday.

Our week in pictures...Oh dear. I found my camera cable! But I still haven't downloaded my pictures. I will do that this week, really. I have a precious video of Tessie doing the Itsy Bitsy Spider too, but I will have to try to record that again, because part way through the song Jack runs through the background necked as a jaybird. Probably shouldn't post that on the blog.

Tuesday, February 23, 2010

Oh, come ON!

Maria- "Mom, can a penny be worth a lot of money if it's really old?"

Me- "I don't know, maybe. I don't really know anything about old coins."

Maria- "Well, I found a penny from 1979!"

Saturday, February 20, 2010

What they said....

Kain- "Can I play the Wii?"

Me- "Sure, as soon as your Saturday chores are done."

Kain, in a wailing shriek as he stomps off- "You know, I worked hard all week! And now I have to do chores today, and chores tomorrow, and then work again all week again next week, and then I'll grow up and get a job and work until I DIE!"

Me- "Yep! That's pretty much how it goes."

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!

Wednesday, February 17, 2010

Jack, part 3, and a blessed Ash Wednesday

Good morning! Thank you everyone for your kind and helpful comments and prayers, I do appreciate them all. I wish I could respond individually but it's been a busy few days and I've got tons to do to get out the door today for our little road trip. I did want to give one last post about Jack's history.

First, when I talk to people about Jack, I usually feel I'm getting one of two reactions. The first one is the "me too" reaction...especially about the speech issues and motor skill issues, from moms with boys, I would get the "my son did these things and he was fine" kind of thing. Which I'm sure is very true! We've seen it ourselves with extended family members. And even Maria had various sensory issues from the time she was a baby that led to weird little behaviors like refusing to be in the same room with a flushing toilet or vacuum cleaner until she was seven years old. hehe. Other than maybe the eye contact issue, I can't really point to one of the items I listed yesterday and say, "This means he has autism." We have a couple of friends with autistic kids, and I will find myself studying them and saying, "Oh, Jack does that. He must have it. But he doesn't do that, or that. Maybe he doesn't have it." The truth is that autism is a spectrum, and it affects different kids very two kids with it will look the same. And also, I'm not attached to having an autistic child. If they tell me tomorrow, "Hey, your son is fine, he just needs a little speech therapy and you'll be good to go," I will be doing the happy dance all the way home, believe me.

The other reaction I feel sometimes, and it's probably deserved, is at the other end..."what the heck is up with this? Why didn't you get him evaluated sooner?" Well, there's lots of reasons why we were able to poo poo this away for so long. For one thing, our pediatrician let us. Well-child visits are not what they ought to be, and screenings for autism are not what they ought to be. He's been to every well-child visit, and other than making sure he was making that eye contact as a baby, they were never concerned with anything but his speech, and that always progressed just enough to make everyone comfortable taking a "wait and see" approach to pursuing speech therapy. The possibility of autism was never, ever brought up by any doctor at his pediatric clinic. We were the ones that finally sought a referral. And Jack's symptoms were so subtle for so long and easy to explain away. These things became issues slowly over a period of five years,,,it wasn't quite as obvious a picture as I painted when I just made a list of all the problems he's ever had yesterday. Lots of kids are picky eaters. Lots of kids are slow to develop motor skills. Lots of kids are introverted. Lots of kids are slow to speak well. Lots of preschoolers have tantrums and trouble expressing themselves. Lots of preschoolers have weird little obsessions and routines. It wasn't until he was about 3 1/2 that I started to become concerned. But even then, we felt like maybe we were just comparing him to Maria, who was extraordinarily verbal and has always had amazing fine motor skills. It was only as he got older that I realized he was falling further behind, that his behaviors were becoming more and more pronounced. The hammer over the head was at VBS this past summer. Maria was a helper with the preschoolers, and she said, "Something is wrong with Jack. He doesn't act like the other kids." And I watched him, and she was right. Yes, there were kids, boys especially, that were distracted, that couldn't use scissors well, etc., but none really quite like Jack. I knew then, really knew. And I asked a friend of mine, a kindergarten teacher who knew Jack, and she said that yes, she did think there was something there. She was the first person to acknowledge this out loud, to not pat me on the hand and assure me that he was fine, and I cried over it, partly with grief but partly with relief of feeling like I was not crazy. And I talked to my husband, who insisted that Jack was fine, and I cried, and cried, and cried, and I researched and read, and I borrowed and bought books, and I talked to my husband again, who still insisted that Jack was fine, but I made an appointment with the pediatrician anyway and got the referral, and I cried some more and obsessed some more and dealt with this grief mostly alone because my husband still thought Jack was fine, and I filled out forms and got on a 5 month waiting list for this appointment, and I obsessed and read and mostly felt really alone on this journey, and I started to realize why so many moms with special needs kids are single mothers. Men, not all but most I think, are very, very good at denial, and very good at letting their wives deal with things like this alone. I saw it often as a pediatric nurse, most of the moms with kids with special needs, especially severe ones like Down's, CF, CP, etc, were single mothers. Some dads just flat walk out, but I think many times just the pain of both sides dealing with the problems so differently and not being able to reach each other tears them apart. I never thought my husband would be that guy, I never thought I'd be that needy, crying wife desperate for support, and it was a very difficult time for me. He did eventually come around and is trying hard to prop me up through this, which I appreciate, but he still has a very different way of dealing with this than I do, and that has been painful still. I'm very glad he is coming with us to the evaluation, because he needs to hear what they have to say, needs to have someone else talk to him about Jack besides me.

So, this post has gotten really long, and the main reason I wanted to write this is because I didn't want to leave this as I did yesterday, a long list of all the things that Jack can't do. Because that is only half the story. Part of the reason we were able to reason away Jack's problems for so long is because there are a lot of areas he is quite gifted in. We recognize now that his obsessive interest in these areas is probably another symptom, but still, he has quite an amazing brain, if a quirky one. Jack has always been obsessed with letters and numbers, and at age two he could not only count to 30 but could recognize written numbers up that high as well. He could also recognize all of the upper and lower case letters by age three and knew what sounds they made and what words started with those letters, and by his fourth birthday he had taught himself how to read. He has always, always been obsessed with vehicles of any kind, something I'm sure is common to many boys, but once he could read his obsession took off for real. He learned from library books the name of every darned construction vehicle and machine, farm vehicles and machines, different kinds of trains...some of his first words were "backhoe", "combine" and "excavator". He has also always loved music. At age two, his favorite song was Handel's Messiah. I know very little about music, but with a couple of favorite read alouds he soon learned the names of all the instruments in the orchestra and started begging for a tuba and a violin. Of course, he doesn't have the motor skills at this time to be one of those tiny people with a tiny violin, but we did get a piano last year, and he promptly sat down and taught himself to play "Ode to Joy" after hearing Maria play it a few times. Later, he developed an interest in outer space, and on his own he found a picture book about the solar system on our shelves and taught himself the names of all the planets. He can do extraordinary things, this boy, and whether this is just another symptom of his diagnosis or no, his extraordinary abilities will surely help him achieve many things. I know his delays are many, I know we have a long way to go, but I really at this point have high hopes that we can catch up his delays with lots of good therapy and really see him bloom. I know he will always be quirky, I know he will always be "different". That's ok. In our house, we don't consider that a bad thing. In fact, in our house, being "different" is practically normal. :) I hope that homeschooling will shelter him from the meaness "different" people encounter in this world until he learns well that he is wonderful and loved just exactly the way God made him. And with that, my friends, I need to go and get busy. Many small things to take care of before leaving my three other kids for two days. Tess is at my knee with a board book demanding some attention, so I'm going to give her some and then get ready to leave after noon mass today. It will be so hard to leave Tess overnight, but siblings aren't allowed at these appointments. And I have a feeling it will be very difficult, even for me, to hear what they have to say. Keep us in prayers this Lent if you would. I'm sure I'll be back soon to post all about our appointment.

Tuesday, February 16, 2010

Jack, part two

Ok, well, let's get down to the nitty-gritty. It's very difficult to continue chronologically at this point. Instead, I'm just going to run through the different areas of development on the packet. I think this will be the quickest way to go.

Feeding and nutrition- Jack is an extremely picky eater, and always has been. So is Kain, but unlike Kain, Jack's specifically seems to be purely a sensory issue. You can usually talk him into at least trying something, but he will gag and choke on almost anything not already on the list of "Jack foods". He will eat peanut butter sandwiches, peanut butter tortillas, string cheese, milk, crackers, popcorn, bananas, apples, and grapes. This makes up the bulk of his diet. There are other things he will eat, junkier stuff, that we don't have every day like pizza, McDonald's chicken nuggets and fries, tater tots, cookies, ice cream, chocolate and a couple of other types of candy. No veggies. No meat to speak of. No juice, few fruits. He does take a multi-vitamin. He hates it and gags and carries on, but I bribe him to take it with a couple of marshmallows. The list is smaller than it used to be. He used to eat fish sticks, pasta, scrambled eggs, plain chicken, carrots,,,he won't anymore. He grazes all day and it is very difficult to get him to sit at a table with us and eat. I'm trying to work on this, but it's difficult. He can reach most of the food himself now and I'll often just find him sitting upstairs with a box of crackers. He can't use a spoon and fork very well at all, but as you see in the list above, there's not many things he will eat that require a spoon and fork either. We are interested in trying the casein/gluten free diet that is so recommended by some people, but as you can see it will be difficult...what he does it is pretty much all casein and gluten! But we will give it a shot.

Self care and sleep- Sensory issues play into a lot here. He will not stay dressed at home. He does in public at least ( was an occasional issue in the past :)). But at home, he is constantly stripping off his clothes. He says he's too hot, but I don't think that's it. Our house is old and drafty and cold right now, and he will have purply, goose-bumped legs and freezing hands and feet and still refuse to keep clothes on. He will not poop in the toilet. He does have bowel control, but he will only go in a diaper. Any measures we try to take to work on this have only resulted in him refusing to poop at all, so we have let it go for now. He also has a lot of difficulty falling asleep. I've talked about that here before. We've tried melatonin, but it seemed to cause nightwaking and nightmares. He can't dress himself, except that he can pull on underwear and pants (if they have an elastic waist...almost all of his do) if you lay them out on the floor for him.

Motor skills- His gross motor skills are great. He can (and does) climb everything, flip somersaults, pedal a bike with training wheels. His fine motor skills are atrocious. Just this past summer he finally started to scribble with a crayon or pencil. I have seen him make a couple of letters recently with a magnadoodle though. Those seem to be a lot easier for him to use. He won't do playdough, thread beads or do any of the fun Montessori-type things I've tried to set up for him. He is very interested in using scissors, but so far all we've managed is making snips in a strip of cardstock with great difficulty. He doesn't have a lot of the typical autism behaviors like toe-walking or spinning, or rocking compulsively, though he will occasionally spin, especially if he is nervous and in a new situation. He doesn't hit or scratch himself, but he will pull on his ears REALLY HARD sometimes when he is upset.

Speech, language, hearing- His vocabulary is quite good, and he speaks well...there are a couple of sounds he has difficulty with, but nothing out of line for a five year old really. His issues are more subtle than that. The biggie is that he uses "scripted speech". He can't communicate well, can't express himself well, so he will kind of borrow phrases from movies he's seen or from the people around him, or he'll use a phrase inappropriately. The actual favorite phrases of the moment change every so often. For example, one of his latest is to scream, "I don't need you anyway", which is a line from Brother Bear. Or to say, "I'm going to lose the Wii", even if whatever he is upset about has nothing to do with the Wii. He can't usually answer questions that require more than a yes or no answer, or if he does his answer probably won't make any sense. Although he can speak in complete, even complex, sentences, he will often go out of his way to avoid doing so. For example, he will bring you a jar of peanut butter from the kitchen instead of asking you for a sandwich.

Sensory skills- Lots of little oddities to list here. He is very rarely physically affectionate with anyone but me. It didn't always used to be this way, but just kind of developed. This has been very sad to me, to see him withdrawal from his grandparents and even his dad in this way. He often mouths things like his clothing, licks his hands, and seeks out certain kinds of stimulation...for example, he loves to shove his hands or feet underneath people. Kain used to do this too, oddly enough. He loves to swing, which is nothing unusual, except that he will do nothing else. If we go to the park, he will happily let you push him on the swing the entire time we are there and will have no interest in doing anything else. He has weird little language issues. There are certain phrases (no, oh no, uh-oh, maybe a couple of others) that make him very upset and he will go to great lengths to avoid them. For example, he and Tess are watching Caillou right now. There's a part of the episode where someone says "Oh no", and so when it gets close to that point, Jack will cover his ears and start saying "AHHHHHHH" so he can't hear it. He won't let you read books that have any of those things in it. He even cried at Christmas time if we sang "The First Noel". You know..."Nooooo-ellll, Noooo-ellll". It's ok. You can laugh. We did too. Gotta have a sense of humor about these things. This little weirdness is probably the one thing that has interfered most with public behavior. We were sitting at our homeschool co-op waiting for Kain and Maria's classes to be done, and one of the moms was reading a book to her toddler. It was a Carl book, which has very few words, so she was ad libbing, and she kept saying, "Oh no!", and Jack would scream. Sigh. His sensory issues and issues with being touched by strangers have made attempted trips to the dentist and barber a special kind of torture for us all.

Play skills/social development- Jack does play, and I would say he even plays imaginatively, but not very often and not with most toys. He will set up his trains or cars and you can tell he is pretending something. And all last summer he had a "building site" going in the backyard. He does tend to line up toys, and this was one of the early things we noticed. He would line up cars, bumper to bumper, all across the house, or blocks, etc....we thought he was just building roads. But they were disturbingly straight, and there was no pretend play involved in this, just lining up. Then we saw him doing it with other things...books, shoes. He will not play with play dishes, dolls, etc. which is surely not unusual for many boys, but he can't even do it with prompting, like if you say, "can you pretend to mix a cake" or "can you put this baby doll to bed", he will have no idea how to do that even though he knows what those things mean. Even if you show him and then hand it to him to try...he won't do it. He will not sing, dance, or do hand rhymes, never has, though he does like music. He won't imitate hand gestures at all. We can't even get him to try the Sign of the Cross. He just doesn't seem to get it. He will say the words, but he won't move his hand. He didn't have any imitative play, i.e., playing hide and seek or peek a boo, copying things he sees us do...this absence has become so obvious now that we have Tess that I wonder why we never noticed it before. Tess will imitate *everything*. She will follow me around the house while I clean, fold laundry, etc., and copy what I do all day long. Jack never did anything like this. As for playing with other children,,,he's not really interested. When he is with a group of children, you will see him play along side other kids well enough if he happens to want to play with the same thing they do, and he seems to enjoy the idea of "going to see friends", but he doesn't really play *with* them. He is always content to just go do his own thing. He doesn't even really try to engage us. He doesn't do things like bring us things that he's built or show us things he finds outside, that kind of stuff.

Last, but not least, behavior- he really is not a major behavior problem. He's a pretty quiet kid, and many people that haven't spent a lot of time around him are surprised we are having him evaluated because they know he is verbal and they don't get to see a lot of his little oddities. His issues are more subtle than what springs into most people's minds when they think of an autistic child. He does have tantrums, but I don't feel like they are manipulative in nature like Kain's are. He just kind of falls apart when things aren't going the way they are supposed to, and in this house, that happens a lot. He worries a lot. I wouldn't say he is anxious, but he kind of fusses and worries about certain things being just so, and he will ask you the same questions about something over and over again, like a rote script, and will get upset if you don't give the "correct" answer. For example, the first term he attended preschool classes at our homeschool co-op, he would need to prattle through the routine many, many, many times the day before..."we are going to have circle time and share time and snack and recess and craft time and sing the marching song and then you will pick me up and we will have lunch and...." over and over again, and if I didn't respond or got irritated and said, "Jack, that's enough, we've already talked about this" he would fall to pieces. He is usually pretty obedient, though you may have to request something several times to register on his radar, but he can also get very worked up about things and just kind of shut down and start screaming because people aren't responding in a way that will calm him, which mainly means dropping the conversation/arguing, holding and shushing him for a minute and bringing his emotions back down, and then starting over. Other types of behavior problems come from the fact that he is more physically mature than mentally mature. That is, he can get into a lot of trouble and has no judgement as to why he shouldn't do certain things. He is especially adept at messing around with our electronics and has seriously messed up our computer by figuring out our password somehow to access our desktop, go online and download a virus, delete files from our desktop, etc. He can get to any safe place I try to keep dvd's and cd's and drag them around the house. He will reset the alarm clocks. Stuff like that.

To finish up, I will say that there was never any big regression in acquired skills. He did lose the ability to make eye contact at some point. I don't know when exactly that happened...I can guess somewhere between 1-3 years of age. I know he did make eye contact as a baby, and at some point after he became an active toddler he was unable to do it anymore. I'm sad to say that we didn't notice this for quite some time. I think he just seemed busy and active, and it just didn't register. It was around 3 1/2 that I was starting to fear that something more was going on than just immaturities in certain areas. More about that in my wrap-up post tomorrow though. If you've actually read through all of this, God love you! Tomorrow will be much shorter! :)

Monday, February 15, 2010


Instead of doing a daybook this week, I'm just going to write about what is consuming all of my thoughts...we begin a special journey this Lent, our journey for Jack. On Ash Wednesday, we will travel 3+ hours to a university developmental center to have him evaluated for autism spectrum disorders. Isn't that a fitting time to begin such a thing?

I took this picture just for the occasion. I'm filling out reams of paperwork for this appointment, and they also want a picture stapled to the front. I couldn't find a recent picture of just Jack actually looking into the camera, so I had to take some. He's not an easy guy to photograph. This one came out great though. It looks just like him. Is that a weird thing to say about a photograph? They *all* look like him, of course, but this's special. Jack rarely makes eye contact anymore, but when he does, this is just what he looks like- crooked smile, a little shy...

Anyway, I've wanted to post more about this before, how we got to this point of finally having him evaluated, and I've put it off because it's such a *big* story. And I'm sure this will be a very long post, I'm sorry about that. Maybe I will break it up into more than one post. But filling out all the paperwork has forced me to get my thoughts together, to reach back and dust off memories of how things were at different points. I could say that there were almost always things that niggled at me about Jack, but I'm not sure that's genuine. I mean, you could probably always say that, you know? If one of my kids was diagnosed with a brain tumor tomorrow, I would say, "Oh, well I should have known something was wrong when she had that headache three weeks ago." Hindsight is 20/20, as they say. And part of that is why I'd like to get all of this down now, before we see any professionals that may taint our very unprofessional opinions and thoughts about our son.

These forms always start with the history...pregnancy and birth history, medical history, developmental milestones, etc. And there's really not a whole lot of significant information to report here. He was full term. My pregnancy was uncomplicated and healthy. His birth was a bit rocky in that I had prolonged rupture of membranes, and he ended up being in the hospital for a few days on "just in case" antibiotics. He also had rather wet lungs at birth and was on nasal cannula oxygen for a day or two. These are all very common, even mundane, complications. I used to work in a hospital nursery, and these are very common interventions. His medical history had a few early bumps. His lungs stayed reactive, and he had problems with wheezing quite frequently that first couple of years. He would even wheeze from crying hard. He had RSV when he was a few months old, but we managed to stay out of the hospital. His lungs strengthened though. He still has asthma, but we only break out the nebulizer a couple of times a year, and it's almost always a virus that triggers the problem. He had ear infections, lots of them, the first at 2 months of age. The pediatrician said he was the youngest baby he'd ever had with an ear infection. And he had them a *lot* that first year and a half, which meant lots of antibiotics, lots of problems with diarrhea and yeast...even then he was hypersensitive to new tastes and would gag and often vomit on most medications, so that was rough. They started talking about putting him on daily antibiotics and possibly putting tubes in his ears. And so we started looking for alternatives. We ended up taking him to a homeopathic practitioner. She saw him once, prescribed a remedy, and he hasn't had hardly an ear infection since. He was born with an undescended testicle, and at 2 years of age they decided to operate on it. They found a little hernia was the culprit and repaired that. His vaccines are up to date, and no, there was no memorable reaction to any of them. So, I wouldn't say his medical history was pristine, but nor do I see any place where I can say, "Oh, this was a definite red flag."

The developmental milestone section is the first place where it starts to show a bit. Not early on though. As a baby, Jack seemed normal in every way, frankly. He was social. He smiled, made eye contact. I was a baby nurse, I know what to look for, I would have noticed issues like that. He had colic, but so did my oldest, and it passed around 4 months like hers did. His early milestones were all within normal range. Looking back, only a couple of things stand out. One, at some point after the early months, he started having trouble falling asleep normally. Unlike my first child, would no longer rock or nurse to sleep, and trying to do so seemed to just make him more and more upset and stimulated. He did love the baby swing, ironically, but once he outgrew that we were in trouble. We ended up putting his crib in a separate room and laying him down alone to sleep...something totally foreign to my crunchy-momma leanings. He had the hypersensitive gag reflex and never took to most table foods very well. And his speech developed on the slow side. Not terribly so. No red flags at the time in the absence of other significant issues. His speech *did* develop, just slowly. And as he became a toddler, issues with fine motor skills started to show. He had no interest in trying to dress himself, brush his own teeth, using a fork/spoon (although he would eat very few foods that required them anyway). I see this as a red flag now. Even Tess is already trying to do these things, trying to push her feet into her shoes, draping clothing over her head to try and dress herself...Jack never did any of that. He still doesn't. Anyway, with that, I'm starting to spill into another area. I think I will stop here and pick up again later. My head is buzzing with thoughts I want to get down, but I have to get my day going. Thanks for sticking with me this far!

Tuesday, February 09, 2010

My big babies

It looks like Tess has weaned.
I guess that's for the best. It will make things easier when the new one arrives. Still, it was kind of unexpected and leaves me a bit sad. She's my earliest weaner by far. I think it's because she's my only finger-sucker. She still will curl up when she's sleepy or upset and kind of "assume the position", but then she plugs her fingers in her mouth. My milk supply was dwindling anyway because she was only nursing a couple of times in a 24 hour period, and then when the second trimester came I think it dried up completely. She started going two and three days at a time without nursing at all. Then last week, she was awakened by a noise and very cranky about it and wanted to nurse, and I realized I couldn't really remember when the last time she nursed had been. I thought, "This may be the last time she nurses." And so far, it has been.

Also, Jack slept in his own room most of the night last night. He is *very* difficult to settle down at night and takes a couple of hours to fall asleep. Usually, especially since I have taken to going to bed earlier lately, he is still awake when I go to bed, and then we just (all three of us!) fall asleep together. This happens so often that we actually still had just a toddler bed in his room, and it was rarely being used. But in anticipation of adding another baby to the mix soon, we finally put together a twin bed for him that we'd been storing out in the garage and I bought a Thomas the Tank Engine sheet set for it. I moved the toddler bed into my bedroom (for Tess to start using, though we haven't started working on that yet). And then I left things alone. I know Jack well enough to know that it's best to proceed slowly with these things, so I just kind of let him get used to the changes in furniture and such. Well, last night, I was getting ready to go upstairs to bed and went to hunt up Jack, and I found him asleep in his own bed! He did end up in my bed at some point, but still...progress!

A while back I wrote this post wondering how I was going to work out new sleeping arrangements and such before the baby came. Things seem to be working out on their own, though I still think they will need a bit of nudging from me too. We will work on that after our little trip this month. My goal is to have Tess using the toddler bed, Jack in his own room, and the cosleeper free for the new baby. So,,,this is a good thing. Right? Yes, of course it is. (sigh) I just always seem to feel a little bit of growing pains before a new one comes, a kind of mourning for the way things have been and knowing that life will be changing soon. See?

Monday, February 08, 2010

Another snowy daybook

Outside my window...we are expecting more snow. I thought it was supposed to start this morning, but I woke up at 6am to at least a good inch already on the ground. Hmm. I'm ready for Spring.

I am hearing...Kain rocking in the rocking chair behind me waiting for the bus. Not much else. Everyone's asleep.

I am thinking...we have been eating out way too much. My budget is shot. I need to come up with some quick dinner ideas to keep on hand to fight the temptation to pick up stuff.

I am thankful for...not living in Virginia. :) I'm from northern Virginia. I love Virginia. I'm glad I'm not there for the 2+ feet of snow though.

I am wearing...a white tshirt and aqua pajama pants. I went to walmart last night in this. I'm not proud.

We are currently reading...By the Shores of Silver Lake with Kain. Assorted stuff around the house. I need to make a good library list and get some more books in the house for the others. I won't be taking the children. Last time we were at the library, we found this book. It's a sad day when I can't let my small children pick library books. We discuss things pretty openly in this house, and I would have used this to delve into this discussion with Maria or even Kain. But I resent the hell out of having stuff like this shoved down the throats of my preschoolers. I knew my day of censoring library materials would come, but frankly I thought it would be when Maria discovered the "Young Adult" section. I never thought my issues would come from the picture book shelves. Silly me.

I am praying...for a fruitful Lent. I haven't planned anything. I've thought about ordering something for me to read, but honestly, we have a lot around here already, and I'm sure I can find something online. Any ideas?

Latest on the babies...Tess has taken to doing this Jersey girl whiiiine anytime she is mad about something. She says, "MAAAAAAAAAA", but it's like a three syllable word, her pitch rising and falling. She sounds like Gloria Bunker.

Are you familiar with Nintendo Wii? We got one for Christmas, and on this game you can create a "Mii" to be the character that you are playing in the game. Jack figured out how to create his own. It is quite a sight, this Mii. He has a gigantic head and the blackest skin and eyes you can choose. But he has caucasian hair, straight and light brown in color and balding, and big black goofy Buddy Holly glasses. Jack named him "Gimzberg". We have no idea where this name came from. So. His Mii is a black, near-sighted, balding Jewish guy. The other kids created Mii's that looked like themselves. Not Jack. :)

From the kitchen...not a thing. We've had a crazy weekend, and I will be cleaning my kitchen today. I have no big kitchen plans except to put up a few more freezer meals.

Around the up my bedroom for company. My mom is going to come stay with the other kids while we take Jack to his evaluation next week.

In the learning room...just plugging away with Maria, and hoping to get to some Lenten planning this week.

In the crocus leaves are poking out through the snow, and yesterday we saw a robin in the front yard. Poor robin. We need to make sure the feeders are full today too. More snow coming. Waaah.

Plans for the rest of the week...our homeschool co-op starts this Thursday and will run for the next 10 weeks. I forked out big bucks so I wouldn't have to teach this term. I am taking the two littles to a local performance of Goodnight Moon and The Runaway Bunny, won't that be fun?! Otherwise, we just have the usual dance/PSR/therapies.

Have a great week!

Monday, February 01, 2010

A first of February daybook

Outside my windows- dark still, and very cold...single digit cold...several inches of ice and snow too.

I am hearing...silence. Jack and Tess woke up and then fell back asleep on the couch. Every so often I hear a car crunching and scraping by on our icy road.

I am deep thoughts. I feel like all I ever blog anymore is these daybooks. Sorry about that. I'll get there again.

I am thankful bed. We spent the weekend in Branson at a hotel. Nothing like a hotel to make you thankful for your own bed.

I am wearing...lovely olive green sweatpants and a pink pajama shirt. The sweatpants are over the pajama pants. I was cold.

We are currently reading...Kain and I have started By the Shores of Silver Lake. I was reading a 50 year old cookbook with Little House recipes that Maria found at the library. It was less an actual, usable cookbook (unless you really are interested in cooking a pig on a spit) and more just background information about the times that Laura and Almanzo lived in. Very interesting! Now I'm reading Engaging Autism, thanks Mary!

I am praying...prayers of thanks for a safe trip this past weekend. We definitely had one of those guardian angel moments where we came really close to an accident. The roads were pretty bad and we were probably pretty stupid to go, but we did, and we made it there and back safely.

Latest on the babies...We got Jack's evaluation appointment! Happy dance! Happy dance! It's for Feb. 18th. Tess's newest thing is naming body parts. She's been able to do a couple of them for a while now, but she's added considerably to her repertoire. She says "noe" (nose), "eye", "her" (hair), "er" (ear), "chee" (cheek), "ps" (lips), and "tee" (teeth). Little honey five is getting BIG. Have I said that before? Oh my goodness, I feel huge and breathless. He's stopped the actual kicking and has moved to squirmy, wiggle movements. I can often feel sharp little parts poking out. Makes me nervous. There's still several weeks to go, you know? Slow down, kid!

From the kitchen...Kain's birthday is on Tuesday. We celebrated in part this weekend with the Branson thing, but he will get his presents on Tuesday and he gets to pick dinner...homemade pizza and mint chocolate chip ice cream. I'm making some cupcakes to bring to day treatment.

Around the house...Hey! I actually made some great progress in the school room! I still have a ways to go, but I'll take what I can get.

In the learning room...Kain will be joining us today because day treatment has been snowed out. This will be interesting. All I really have for him is some math.

In the garden- The bird feeders are crazy busy. I got a new one for Christmas and attached it to my kitchen window. The others are hanging further outside the window. It's been great fun to work in the kitchen and watch the birds. We've got our usual chickadees and pair of cardinals, and the pesky starlings, but now we've also got some titmice, nuthatches, and even a woodpecker! Unfortunately, the cats discovered the new feeder while we were gone and have set up camp on the counter by the window, which is keeping the birds away somewhat. Grrr.

Plans for the rest of the week...the usual, or what doesn't get snowed out, plus Kain's birthday dinner. I hope (hope! hope!) to finish up the school room, as well as dig through a couple of piles elsewhere. I still have two more rooms to dejunk, as well as that durned living room to paint, before this baby comes!