Sympathy!

Gavin has apologies down! The other day after therapy, he had been taking a toy from another boy sometimes, and I kept having him give it back. After he gave it back one time, I noticed the other boy crying and holding his head. I didn't THINK Gavin hurt him, but wasn't sure if he had thrown a car back to the other boy, and the other kid hit his head or what, so I told him I knew he hadn't meant to hurt the other boy, but I thought he did, so he should go say he was sorry. He crossed the room to where the other boy was sitting, knelt down and said "I'm sorry. I didn't mean to hurt you." The other boy tried to push him away, and Gavin repeated "I wasn't trying to hurt you. I'm sorry." Apparently the other boy was pretty much ok after that, because he started slowly going back to playing. I could see Gavin hadn't gotten up, but looked confused, and I wondered why. Not for very long though, because as soon as the other boy bent his head down to play on the floor, Gavin kissed the spot where the boy had been holding his hand to his head. He ended up kissing the boy's head 3 times. He had just been trying to find an opening to do that! His mother turned to me and asked how old Gavin was, and how long he had had that ability (apologies). I told her that we had been working on sympathy recently, but had just started to really get it. Truthfully, it's just been in the last few weeks I think that he heartfeltedly apologized to us, and never had to another person. I know the school would sometimes tell him to say he was sorry to another kid, but I don't know as I believe in teaching kids to just go and say they're sorry. I think teaching them about the real reason they should apologize is better, like to say they didn't mean to hurt someone else. I think that's why Gavin understands it a whole lot better than some kids, to whom "I'm sorry" are just empty words. I was so proud of his apology!

Why/Because

Today, I was working with Gavin on learning the why/because type of question and answer. I gave him simple examples, so hope he figured it out. We also read the short version of "Pinocchio" that he took out from the library. He really seemed to like the name "Gepetto" since he repeated it multiple times. I think he got the idea of what a lie is, because I gave him simple examples of that also. We talked to Nate earlier, and he said he and Jenn used to tell Ari that when you lie, a red dot shows on your forehead that your mom and dad can see. He said she used to cover her forehead with her hand for several years when she lied. That must have been pretty obvious! Sounds like a good idea to use with kids! Although, Gavin's not really lying at this stage yet. He did once, but hasn't gotten really into it yet.

The Opthamologist called today, and said he should see Gavin every couple of months, to keep track of how much his eyes are crossing and if they're getting better. (We noticed it in October, but once he started wearing glasses, they didn't cross quite as much. He's been wearing glasses and these little pieces of tape stuff on the inside of them, called intra-nasals, I think, for months, and his eyes have gotten better.) He had an MRI a few weeks ago just to make sure he didn't have a tumor or anything, and that was fine.

medical update

We went to see the Nephrologist on Thursday. Gavin's bp was higher than it should be, so the doctor wants him to start taking a bp med. Because high blood pressure can cause multiple problems, she wants us to get an ECHO of Gavin's heart to see if the left ventricle might have thickened. She wants to make sure we keep checking his eyes since hypertension can affect the eyes. The doctor said she wants him to have another renal ultrasound in a few months, so we can compare it to this last year. We'll have to keep checking his kidneys as he grows, since we don't know how much, if any, they will grow. Right now, the largest of his kidneys is only in the 25 percentile for his height, which probably means they're not working as efficiently as they should. But as he grows, one or both kidneys could keep growing, increasing their efficiency. We just don't know yet.
They took blood to check multiple things like electrolytes, so after it comes back, we can check with a renal dietician to see if she wants us to put Gavin on any special diet or anything.
We saw the Endocrine doctor today. She said some of the blood-work was endocrine related, so wants to see what that shows before thinking about giving Gavin growth hormone shots. She wants him to have a bone age x-ray before we see her again. She also noticed that his thyroid labs weren't quite right. His TSH was high, so she is starting him on a low-dose thyroid medicine to see if that makes a difference.
She also said that sometimes when he doesn't seem to want to eat, it may be from ketosis,so we should give him some juice or something and see if that makes him hungry afterwards.
WHEW! So many things going on right now! I'll have to write about other stuff later.

Gavin got bullied for the first time

We went to McDonald's Playland today, and there was another boy there, maybe 3-4 years old, just a bit bigger than Gavin. He kept pretending to be a monster and reaching out for Gavin. Gavin, in return, screeched and ran back to me, saying "No! I want Mom!" I did eventually get him to stop screeching, but each time the other boy growled and reached his arms out to get Gavin (he never actually touched Gavin), Gavin shouted "No!" then ran back to me, scared, thinking the "monster" was going to get him.
One of the times, I put him on the playset past where the other boy was sitting (waiting for Gavin to try to pass by). I heard running in the tunnels of the playset, then Gavin RAN down the tunnel, with the other boy chasing him, so apparently the game had progressed to chasing instead of just blocking Gavin from getting onto the playset. I was getting kind of annoyed since the kid stopped Gavin a good 20 times, and his mom didn't say anything to her son. Meanwhile, I was just concentrating on comforting Gavin when he'd run back, and trying to convince him to just walk right by the other kid. Gavin got more courage every time I'd tell him, but then would still back out before he made it past the other kid. Luckily, the mom finally decided it was time for them to leave, since she and her other kid were done eating. It had gotten to the point I was going to just talk to the other boy myself, but wanted to see if Gavin could work it out on his own. Apparently, he couldn't quite this time, but it did give him experience dealing with another kid I guess.
After they left, another mom in the play area said "there goes the playground bully", since she had witnessed the whole deal. I didn't think of it as that serious at the time, but I guess she's right- that's probably how bullying starts. The other boy started out just playing, but then when he saw how much of a reaction he got out of Gavin, he kept doing it. And no one spoke to him about it. I should have, but didn't realize how much it was actually bothering Gavin. After all, he was joining in the fun for a while. I thought he was just playing or pretending it bothered him. But after a while, he wasn't. And I kept thinking the boy's mother would speak to him, as I would have if Gavin was bothering another kid. But she didn't. How easy it is for a little kid like Gavin to get bullied!

Nephrology summary

A few weeks ago we went to see Dr. Najera about Gavin's kidney ultrasound and bloodwork. She said based on his ultrasound, his kidneys are small for his height, possibly indicating Renal Dysplasia. She said based on the creatinine level from his bloodwork, she thought he probably had about 50% function in his kidneys, although she didn't know if it was one or both kidneys, and what caused it. She ordered a VCUG to test for possible kidney reflux, or see if there were structural abnormalities. The VCUG was done last Tuesday, and the radiologist was able to tell me at the time that he didn't see any reflux or structural problems. We haven't heard from Dr. Najera with the results though. So we aren't really sure if she's officially diagnosed him with Renal Dysplasia or not, and what, if any treatment she wants to do.
She assumed he was born with his kidneys not fully developed, but wasn't sure. It sounds to me that it's a bad sign if that's the case. If it was a structural problem, they could probably do surgery. But anyway, we still have to wait to hear from the doctor to see what she has decided. Hope it doesn't involve any special diet, since it's hard to get the kid to eat a lot anyway.

Gavin really wants a popsicle!

Gavin's been sick for a week now, but does at least have an appetite now. So Terry was on the phone to his mother tonight when I saw Gavin grab the handle of the fridge, and start walking his feet up. So Terry put the phone next to Gavin's head and said "Tell Grandma what you're doing." Gavin replied "I'm climbing up the fridge." Quite true! So Terry took the phone back to go in the other room for a minute, at which time Gavin said "I know where the freezer pop is!" very insistently, because he was using the handle of the fridge to climb up to get to the freezer, apparently to get a freezer pop.
He sure is starting to sound like a typical kid sometimes!

E.I. visit yesterday- need more therapy???

Yesterday, the new O.T. (from North Branch), Mona, and Gavin's regular E.I. teacher, Emily came to see him together. Mona brought a large piece of construction paper with 2 smaller pieces of paper cut out to make a flower stem and leaf. She also had a cupcake liner to make the flower. This liner had been cut a couple of times to let it lay down flat. Emily started by asking what this was, what could Gavin make out of it? She finally switched gears and asked him what this was, and pointed to the leaf. Gavin responded "a football." We all agreed that yes, it did look like a football. Emily kept going back to the same question, asking it pretty much the same way every time--"what is this? What can you make with it?" Gavin even had the pieces in the right order to make a flower, but didn't respond. I don't think he knew that it was supposed to be a flower. So I asked him if the cupcake liner was the sun. He didn't answer, but did pick it up and look at it, and try to fold it back together. Mona helped him fold it back together and said that it had cuts in it to let it lay flat, and they could make a couple more cuts even. I saw her give him some scissors, which he picked up and started to try to use 2 handed. Mona showed him the correct way to hold them, with his thumb in the little hole, and other fingers in the bigger hole. I left the room to make a phone call. I returned to find that the flower was done, which means they had cut a couple more slits in the cupcake liner (flower petals), and pasted or glued the pieces onto the larger piece of paper. They also had written his name in crayon on the paper, but I think they probably had him hold the crayon, while they helped him write. Anytime Emily asked Gavin a question, he wouldn't respond, but would repeat exactly what she said. Even at times when he needed help, he wouldn't ask for it (which is typical of him right now), but even when she asked him if he needed help, he wouldn't reply. The only verbal interaction I saw him do, was to repeat everything that Emily said or asked over the course of the 45-50 minutes they were here. The last thing they did with him, was had a lunch tray which they sprayed shaving cream on (which Gavin hates, but is good therapy for him), and had 2 cars to play with. One for Gavin, and one for Emily I guess. I know he did start playing with the car, although I think they had to coax him into driving the car through the shaving cream (which would be typical at this time since he doesn't like that activity.) I wasn't really paying attention, but all of a sudden heard Emily say to Gavin "excuse me." When he didn't respond, she said "Gavin, excuse me." I guess he still didn't respond either verbally or to whatever she was wanting him to do (I think she was saying it to have him move his car so her car could get through someplace in the shaving cream.) He didn't do whatever or verbally respond, so I kept hearing her say "Gavin, I said excuse me" and that type of comment. I never heard her tell him what it was she wanted him to do. She just kept repeating "excuse me." Now, the only time Gavin ever hears us say that phrase, is if we burp, and we have taught him to say excuse me when he burps (although we have to remind him most of the time.) I'm aware that we should teach him that "excuse me" can mean different things and be used at other times besides just burping, but we normally tell him what it is we expect of him. The reason that Gavin is in speech therapy, isn't anything to do with his pronounciation, it's because he doesn't seem to know what we're saying sometimes. He doesn't always know what we're asking, so we have to model the correct answer for him if he doesn't answer us. Instead of giving an incorrect answer, normally what he does if he doesn't know what we're asking, is just repeat the question. I've decided that maybe that's how he copes with stress sometimes, is repeating what people say. Lonnie agreed with that idea today. In fact, she's the one who brought it up today. Anyway, the point is that he never spoke to Emily yesterday except to repeat everything she said. When he wasn't doing what she wanted when she said "excuse me" to him so many times, she should have explained what she wanted from him. She also had asked him different times to use his words, to let her know what he needed or wanted, and asked him if he needed help. He never responded when asked if he needed help, and he certainly didn't ask for it himself. So at the end of the session, she asked me "He's in speech therapy twice a week, right?" I responded yes. Then she asked "And feeding once a week?" I said no, twice a week, same as speech. And she asked if he was getting any O.T. So I said "just as part of feeding therapy. They take the first 20 minutes to do climbing, running, jumping, etc." So Mona interjected that of course that would be to get the body warmed up to eat. Emily didn't tell me why she asked those questions, and they didn't have any Home Visit Logs with them to write up what they did on the visit and what they want him/us to work on so I don't know what she was getting at. I'm assuming she thinks he needs more therapy, but if that's the case, that should be the school's responsibility. They've been seeing him for 3 years now, Emily has been working with him for 2 years now. Just before last summer, she did increase her visits from twice monthly, to once a week (an hour each time.) The O.T. is scheduled to come out once every 2 months. If they think he's so far behind, then they should increase his scheduled appointments. I would object if they think we should have our insurance cover more therapy instead of the school picking up the extra therapy. Especially when his current independent speech therapist hasn't indicated a need for more therapy than he's currently getting. Normally I would be upset about Emily questioning how much therapy he gets, with the implication that he needs more. But considering how much they've been wanting him to go to preschool, I think it was good that he didn't respond to her questions and didn't ask for help, etc. They certainly can't expect him to go to school on his own (preschool), without someone there to help him. As Kasarah says "he needs someone to be there to facilitate communication with others." Emily had said last fall when they did his evaluation and IEP, that there would be a special ed aide in his classroom, but no individual aide for him, because they don't think he needs one. She then at another time said that the special ed aide may not actually be in his classroom, but there would be an aide that may be shared between his classroom and the other preschool classroom, so that the aide may be across the hall from him, but would be accessible to him. Now, for a kid who doesn't respond to people when they ask him questions, and won't ask if he needs something (bathroom, food, water, help, etc.), I would think he'd need an aide in the room WITH him, specifically paying attention to him for the most part. The aide would need to be trained to recognize when he needed something, instead of just assuming that he'll ask if he needs something. Of course, the school doesn't know about his autism diagnosis, but even if they don't know that, they are aware he has problems with speech, which is why they're providing therapy for him in the first place. And that's why he still qualifies for special ed. So maybe Gavin not responding to Emily is a good thing. Because then in a few months when I go to the preschool director and talk to them about not sending him off to school without me, I can at least refer back to yesterday's visit and say "See, you could see that he didn't respond, he didn't ask for help when he needed it, etc. You can't send a kid like that off to school without someone who knows him, to help him." So maybe it was a blessing in disguise.