Friday, August 29, 2008

We went to Ryan's open house last night. I spoke quickly with his teacher and she assured me that Ryan is doing really really well. He does have moments when he's a little riled up or when he's lost focus but he's very receptive to being redirected and calming down. She might have to redirect him 10 minutes later, but she said even that doesn't happen that often. And she said it's not all that unusual with 6/7 yo boys, in her (many) years of experience.

"He's all boy, that's for sure!"
"He's friendly with everyone in the class, he talks to everyone, will play with anyone."
"He's very cheerful and happy."

Good things to hear about your child!!

Wednesday, August 27, 2008

Ryan is doing so well at school, it's almost like he's a different child. Another week has gone by, and it was another week of "green" days. I'm just amazed, but at the same time waiting for something to happen. It seems like every year in October he starts to go a little nuts...it happened in 2006 and in 2007. He really likes his class and his teachers, and he has so many little buddies. I've watched him in action with them during carpool and he's just so darn friendly, making sure he says goodbye to all of them, making sure he finished listening to whatever story they're telling him before he gets in the car (as annoying as that is to me, lol!), just all smiles and good cheer.

I like the work they are doing, too, especially the Everyday Math. I've heard a lot of moms complain about it (and maybe I will to in later grades) but so far it is such a creative way of looking at numbers that it's right up his alley. He has one page of homework every night, and he has not yet been reluctant to do it. And he's very cooperative at home as well. He still has his moments, but his anger is pretty short lived, as if he's mentally reigning himself in. School Open House is tomorrow and we're looking forward to it!

I met with his new psychologist today...this one takes our insurance! She's glad that he's doing so well and wants to seem him every other week right now, and is hoping that we can anticipate the October crazies before they happen or at least get control of it right away. Which probably means that it won't happen at all! She's very nice, very personable and I think we'll do fine with her.

Thursday, August 21, 2008

Ryan is doing REALLY WELL in his new school!! I'm amazed at the difference. But I'm not sure if the difference is his behavior or in how his behavior is perceived. He's been in school for 8 days, and has 7 green days and one yellow day...and she's not being lenient at all. Ryan is happy, he is fully involved with the kids in his class and has made a couple of close buddies already. One of them I hear making sure he says "good bye" to Ryan whenever I pick him up. I emailed his teacher to make sure his green days were actually true green days and not "giving Ryan a feeling of success" green days, and here was her response:

I really do feel that at this point Ryan has made a good transition to our classroom. He does need an occasional reminder, but not any more than any other student that receives a "green dot". (I do need to change the note on the calendar - a green dot really is better reflected by "a few reminders, maybe 1 or 2" yellow dot -several reminders and red dot many reminders.) It really is not unusual for 6 or 7 year olds to need to be reminded of correct behavior from time to time. At this point Ryan has not needed to have different standards. His most difficult times seems to be during transitions- when we're cleaning up from one activity and starting another, and walking in the hallways. It is sometimes hard for him to keep his hands to himself. I'm very glad he and Vance have become friends and that he is enjoying school. Please don't hesitate to email me anytime!

YAY for Ryan! I was talking to a few moms at M&L's preschool, several of whom are planning to send their kids to StMM next year. In talking with them, it seems like many people are having the same kinds of (negative) interactions with the administration there that I did, or they've heard of such interactions being common. I think it all boils down to two people there...the principal and the resource director. I'm hoping that the principal retires soon, I've heard rumblings that he's acting as if he really wants to (but that could just be wishful thinking). For the first time in *years* they have unfilled student spots in several grades. They have almost always had an extensive waiting list but I'm guessing that word has gotten out about dealings with these administrators. It's quite a shame actually, because the teachers there and other administrators all seem so on-the-ball and caring.

I still have to decide if I'm going to send Max and Lily there. The only thing holding me back from ditching the school altogether is the thought of sending them to our public middle schools, which are a mess. I plan to put them through the admissions process at both StMM and the public school Ryan is going to, and then make my decision in the spring, rather than in January when they actually have registration.

Thursday, August 14, 2008

Relief

I think Ryan is in the right school, with the right teacher and the right assistance. FINALLY. I felt such relief after we had our assessment report meeting today. Right off the bat I could tell that things were different here because they referred to Ryan as very bright, happy, confident and eager to learn. At his school last year, he was referred to as "impulsive, aggressive, defiant, inattentive, but yes, he's very smart.".

First, his teacher. Mrs H is kind, calm, *compassionate* and as sweet as can be. She doesn't see him as a problem at all. And instead of being befuddled by his little quirks, she saw right through to the reasons why he does/says/acts as he does. Right away today she saw that he hadn't finished his work along with the other kids, but instead of reminding him over and over to finish up, she asked him if he needed more time, she saw that he was distraught over not getting the picture colored and let him know that the coloring wasn't important at all if it wasn't his "thing" (it was a writing exercise). She said she gave him a choice to take the time he needed to finish it if he wanted to (she recognizes that he has some perfectionist qualities and also that he might need to sense of accomplishment from completing it to his own satisfaction) or not worrying about the coloring part and moving on with the rest of the class. This is on day 3! She could only sit in the meeting for about half the time, but she made sure that I knew she would keep in close contact with me and that I was not to worry about Ryan *at all*.

Second, the first thing the school counselor said to me when we sat down (and again as we were leaving) was how glad they were to have Ryan at this school. She knows him on sight, and was telling me a couple of things about how he was getting along with certain kids during carpool the last couple of days. She (and everyone else at the table) was amazed at how well he has acclimated in just the 3 days he has been there.

Third, his report. No speech, hearing or language problems at all (not even pragmatics). No big OT issues, aside from fine motor delay which we were already aware of. They do not believe that he has ADHD, although he does have some issues with impulsiveness and some issues with seeming inattentiveness or lack of focus...but they think that has to do with his fine motor delay (more on that later) and this -----> Their consensus is that his weak spot is processing speed, which means that it takes him longer for paper-and-pencil tasks. This can be so frustrating for a very bright child, not being able to "spit out" the information that he KNOWS in the same amount of time that other kids are able to. This, combined with his fine motor problems...namely, not able to form letters and numbers easily...makes doing writing tasks pretty difficult and not at all fun for him, so it's likely that he loses focus because it's too hard. He does also have some social "delays", mostly in the areas of respecting personal space and keeping his hands to himself.

The plan...he will in fact have an IEP. I honestly didn't think that he would qualify for anything, but I am thrilled that he does. He's not eligible under the Autism heading (which is what his old school was SURE he would receive services for)...in fact, none of these folks think Ryan has Asperger's at all. Sure he's a bit quirky in an area or two that might be common in Asperger's kids, but in the biggest areas, he doesn't fit at all. As an aside, I am almost sure that the rating scales his old school filled out were based on their assumption that he did have Asperger's...they had things on there that I have never ever seen in Ryan, such as a "very evident" monotone speaking voice and "rarely" making eye contact. Not *my* Ryan! Anyway, they have him eligible under "Developmental Delay - social-emotional development". They said that "developmental delay" is kind of a catch-all category for kids up to age 9, for a variety of delays that they can work on and catch up to their peers eventually.

So what Ryan will receive is one hour every day, time with an ECE teacher. She will spend 30 minutes with him in his classroom, and then pull him out for 30 minutes when they will work on handwriting and social skills. They also have a variety of "accommodations" for him in the classroom, basically check lists, prompts and cues, reinforcing behaviors and shortening assignments/copying from the board, etc.

I felt absolutely no defensiveness or negativity at this meeting at all. Everyone there was interested in making sure that I was on board with this before proceeding. I didn't come away from this feeling like there was something wrong with Ryan, or that he was a problem for them. I felt encouraged and like they were going to take such good care of him and that they were personally invested in making sure he is successful.

What a relief.

Sunday, June 8, 2008

We've finished the evaluations by our public school system. The consensus there is...they don't think he has Asperger's at all. Soooo....our OT doesn't think he has it, the 4 professionals who evaluated him for the school system don't think he has it, his dad and I don't think he has it, his pediatrician doesn't think he has it...but one psychologist says he does. After reading the Misdiagnosed book, I really think he is a very gifted child who suffers from some social problems. I don't think it's a case of the school system not wanting to give him that dx so they don't have to serve him...because regardless of the label, he's not delayed enough to receive services anyway. And regardless of the label, he's eligible for some of their social skills groups anyway. Same with the sensory stuff...which I do believe he has...they don't see any signs of it, but looking through is OT chart, whatever he was having problems with wouldn't have made him eligible for services anyway. So there we are.

Saturday, May 17, 2008

Disney!

So, we just spent a full 7 days in Orlando. It was wild! We had a great time, but it was anything but restful or relaxing, lol.

First off, we stayed at Sheraton Vistana Resort, which is mostly a timeshare location but they also rent by the night/week. We had a 2-bedroom villa, with 2 full baths, a full kitchen, living room, dining area, screened in porch and right next to one of the pools (kid pool and hot tub too!). The master bedroom had a king bed in a good sized room, and that bathroom had a HUGE whirpool bath and separate shower, double sinks with granite counters and all tiled. The other bedroom had two queen beds, plus there was a queen sleeper in the family room. Three TV's! Kitchen had microwave, stove/oven, full fridge/freezer, dishwashwer and all amenities. Oh..I almost forgot...it had a (mini) washer and dryer too...so we only packed 3 sets of clothing each and one pr of PJ's..and we came home with all clean clothes in our suitcases!! It was a GREAT place to stay with kids, I'd highly recommend it. The only negative part is the pressure to attend a "sales presentation", but you can avoid answering the phone and not deal with that! Here's what it's like:

http://www.starwoodvacationownership.com/sheraton_vistana_resort/photos.jsp

If you page down to the "Springs Villas", that was exactly where we stayed and it looks exactly like our rooms! And it was reasonably priced, I think we had a special that was $158 per night, which is much less than we'd have paid to stay just about anywhere else with 6 people. It was just about 10 minutes door to door to the Disney parks too. We'd typically have breakfast at the villa, then pickup lunch on the way back from the parks, and then eat dinner out.

The place was huge, too. There are 7 pools there, plus a mini-golf setup and rec rooms all over. An adults-only exercise room, a food market, even a Starbucks! It's gated, too, and you have to have a parking pass to get into the resort plus they ask for ID after 8pm, so we felt very safe. We will definitely stay there again if we ever head back to Orlando!

I'll be posting more about the trip later...

Thursday, April 3, 2008

Update...

The public school assessment ball is rolling. Ryan had a speech/language assessment yesterday and an OT assessment today. The speech person said she got what she needed from him, that he scored well and we'd talk more about it during the final meeting. The OT said that she sees no sign of sensory issues with him now...which is HUGE. She said his posture is good, he has good core strength and his fine motor skills are age appropriate. So he has come a long way since September with his weekly OT! I took that info back to his personal OT and she said she's been considering releasing us...so she did! He's done with OT for the time being, and we can start back up in the fall once we see how he handles being back in school. DH said that he's noticed that Ryan doesn't seem to bump into people/things anymore and we've both noticed that he's less likely to use his hands and body to express himself. We briefly met the psychologist that will be doing his assessment and he is the sweetest, most compassionate man. He was on his way out of the building when the OT called him over and introduced us, he realized we were a part of his caseload so he chatted with me for a few minutes. Then the OT asked me a question, and the psychologist noticed Ryan playing with my keychain, and he sat down next to Ryan and just chatted away with him.

Oh, and another big thing...everyone who has assessed Ryan (besides his private psychologist) has highly questioned the Asperger's diagnosis. Even the psychologist today only spent a few minutes with Ryan in the hallway and said that while it is a hard thing to diagnose at this age, he just doesn't see it (although he was quick to point out that he hasn't spent enough time with Ryan yet and totally defers to his psychologist).

My child, the conundrum.

Tuesday, March 18, 2008

Update...

not much of an update, but here it is. We finally got the doctors to sign off on his food allergy and yeast overgrowth testing. We'll get that done in the next week or so, hopefully, but I don't know how long it will take to get the results.

I tried to get an appointment with the child psychology group that his OT recommends, but they aren't taking new patients until the end of summer. They take our insurance (our current one doesn't) so I was really looking forward to that bonus, plus they also hold social skills groups for boys his age periodically. I'm on the wait list so when they start taking new patients, they'll give me a call. We'll be heading back to the one we currently use, I guess.

Ryan's had some really big rages lately.

Tuesday, February 19, 2008

Still around!

Ryan's been away from school for a little over a week, and I've gone from having no time to having NOOOO TIME. He's adjusted pretty well, he's really resilient like that. Nothing new to report. Took him off the dietary restrictions while we wait for his ped to OK several tests that might point us more closely to what his sensitivities might be. He's had some pretty wild days, but also some really good ones. We've determined that he was probably supposed to be an only child. We have so few problems with him when he's the only one around, he's like a totally different child. :-) He's finally learned to tie his shoes and of course promptly lost all interest in doing it. We're staying busy!

Friday, February 8, 2008

A Glimpse...

of how hard it can be to be the mom of a child like Ryan.

We went to McDonald's today, with the play area. We haven't been in a long time...well before Christmas. Ryan had had a good day so far, but I was still keeping a close eye on him...as close as I could with him crawling around in enclosed tubes. At about the 25 minute mark, I was searching for Ryan to check in on him (as I'd been doing every few minutes), and I noticed a girl crying and an angry looking mom. I found Ryan and as I was checking in with him, the mom came up to me and asked me if Ryan was my son. I said yes, and she angrily told me that Ryan had hit her daughter for no reason and made her cry. "She's just little, and he's obviously big enough to know better. " (For the record, her neice as it turned out, was nearly 5). I apologized profusely and explained to her that we would be leaving and that Ryan has Asperger's...and her very angry reply was that he shouldn't be allowed to play with other kids if that was the case.

Yeah, I know that I shouldn't care what other people think, but when faced with these kinds of comments I can't help NOT care. How can I NOT help but project these kinds of reactions onto other moms of kids that Ryan might hurt, when these comments aren't rare to begin with?
My heart is breaking. I have to pick up Ryan from school for the last time in a few minutes. I'm so sad. I've gotten a couple of very heart-felt emails from his teacher's aide and from a couple of moms, and they've had me in tears all morning. It was easier when I was just plain angry.

I just have to keep telling myself that I'm doing the right thing.
I didn't sleep last night. I'm doubting my self, as I always do. Are we doing the right thing? Isn't it better that Ryan not be in an environment where he is "failing" on a nearly daily basis? If something was going to work, wouldn't it have worked by now, nearly 2/3 of the way through the school year? But I'm pulling him from his friends. His teacher is "shocked" that we're pulling him out (although I guess it wouldn't be professional for her to say "relieved", huh?) I haven't heard anything from the administration yet.

Thursday, February 7, 2008

LOL...as soon as I posted that last post, I "got mail"...from his teacher who is "shocked" that we're pulling him out.

What cemented the decision? Two things. First, I get an email from the resource director who stated that it was time for us to review Ryan's notices of concern and decide whether he would be able to continue at StMM. I was told at the last meeting (before Christmas) that if the number of notices didn't diminish, he would not be able to stay. At that point, he'd had about 8 notices in 8 weeks. Right now? We're looking at 8 notices in 6 weeks (two this week alone). Writing on the wall?? So I started thinking what would be better for Ryan...Mom and Dad pulling him out because we feel like it just wasn't the right place for him, or the school deciding he couldn't continue there. So it was playing around in my mind, and knowing that they were going to make the decision tomorrow morning....it was playing around in my mind. Then, I went to pick up Ryan today. Every single day when I pick him up, no matter how bad a day he'd had, he would run down the steps and jump into my arms. Every. Single. Day. Today, he didn't do that. In fact, he came out the door and walked quietly down the steps with his head down. I greeted him as usual and asked him where my hug was...thinking he was just distracted by something. But no...he was sad because he'd gotten in trouble yet again at school and he told me that he would hug me when he felt better. He seemed resigned.

Yes, I know there are people out there who might say "Hey, he SHOULD feel bad for getting in trouble". Yes, I agree to an extent. But my Ryan has *always* bounced back very quickly. He shows remorse, might have a sad/angry/frustrated moment or two, but then he's always back to his cheerful self. He's normally very optimistic, very perserverant, and today...he was not. It was almost as if he'd given up. THAT cemented my decision. I had decided long ago that the moment this stated affecting his self-esteem, we would have to pull him out. I was only keeping him there, on the advice of the psychologist, for the social interaction. But this tipped the scales in the other direction.
So, I notify the school office at 12:15 that I will be withdrawing Ryan from school and tomorrow will be his last day. I spoke to the secretary, who said she'd inform the assistant principal who would call me. I also emailed the resource director and Ryan's teacher at 12:30, with the same information. I was waiting to hear from them before emailing the moms of the kids in his room, to give them a heads up in case there were any questions, etc. It's 10:40 pm and I've not received a single phone call or email from the school, nothing to ask "why?" or to let me know they got the message or to let me know what the procedure is, nothing. HOWEVER, I do know they got the message because I came home from dinner out with the family, to two emails and a phone call from moms in Ryan's room because their kids were upset that Ryan is leaving. So obviously his teacher told the class this afternoon (Ryan only goes in the morning, and I didn't tell him until he came home today that tomorrow will be his last day, so he couldn't have told them).

Ugh.

The breaking point

Tomorrow is Ryan's last day at school. I'll be withdrawing him in the morning.

Wednesday, February 6, 2008

Aarrgghh.

I'm just so tired of this. Tired. Tired. Tired.

An email from his school, that it's time for us to review his progress and decide whether keeping him at this school for half-days is working for him (actually, is it working for the school). I just shot back a reply that I have nothing to add to what I've already told them or asked from them, I have no questions, so why is it necessary for me to meet with them in order for them to make the decision? Just decide to allow him to stay or decide to kick him out, and let me know. It probably looks to them like I'm trying to be difficult to work with, but these meetings are just too difficult to sit through and I'd just rather not.

I have a call in to the Department of Education to find out exactly what the laws are regarding children of Kdg age. Is he required to be in school at his age? If so, if I pull him out, what do I legally need to do...set up a home-school for the spring? If not, I'll pull him out next week. I just want to get him out of there. Selfish, I know. But I'm so tired.

I'm thinking of pulling him off of this GFCF diet too. I think the whole behavioral change thing was a coincidence. He's even worse now, nearly a week back on the diet (after a single day with dairy added back). His behavior at home has had him in is room most of the afternoon already today.

Tuesday, February 5, 2008

I just set up the initial "intake" appointment for the public school's ECE (Exceptional Child Education) program. These are the folks that will evaluate Ryan for placement in the public school, they are the ones who will determine what (if any) services he will need. There will be a lot of testing and evaluating, including speech and hearing and repeats of some of the psychoeducational stuff he's already had done independently. We will have an answer within 60 school days of our appointment...so by the end of the school year, haha.

Ryan has been really off the wall at school the last two days. I'm not sure what's going on with him, unless this is his body re-ridding itself of dairy. We've been really careful since Friday to keep everything GFCF. If I don't see improvement in the next few days I'm going to start doubting the whole dietary thing.

I'm considering getting a weighted vest for Ryan to wear at school. I may try to make one. I've emailed his OT about it, and maybe they have one he could try. They are very expensive to purchase, like $100, so I don't want to put out that kind of money unless I know it's going to have a positive affect.

Today he had french toast/maple syrup for breakfast, along with some cereal and V8 Fusion juice. Had a Nana's cookie bar for snack at school. Hasn't had lunch yet, but I assume it'll be PB&J.

Monday, February 4, 2008

Today Ryan was late to school, as DH let him stay up to watch the end of the Super Bowl...and DH overslept. He had Peanut Butter toast (GFCF bread, obviously) and cereal with blueberry juice for breakfast. Nana's cookiebar for snack at school. Ham slices and mayo on bread for lunch, with fritos and Snapea crisps. Potato chip chicken with sweet potatoes and corn for dinner. GFCF marshmallows for a snack. Meltdown in the afternoon, when I told him for the 3rd time he needed to clean his legos off the table so I could get it set for dinner; he threw the bag of legos at my face from about 2 ft away, so I hauled him up to his room to stay until DH got home, and confiscated the lego set for good. Meltdown at bedtime over something with DH, hitting and kicking DH, and pushing Lily, ending up losing the opportunity to feed his fish (Lily did it) and having to go right to bed without playtime. He was very sad about his behavior afterwards. Green card at school, but with extra warnings for being very unfocused and ignoring intructions.

Sunday, February 3, 2008

Ryan woke up at 8:00. They all had just cereal for breakfast, with juice. Peanut butter on apple rice cakes for snack. PB&J for lunch, with fritos. Hot dog with DH for late snack. Chili with quinoa pasta and fritos for dinner. Popcorn for late snack.

Ryan had basketball practice/game in the afternoon. Had a meltdown when DH wouldn't play Wii with him when he wanted to. Had an OK afternoon, and watched the Superbowl with DH tonight.

Friday, February 1, 2008

Aha! Dairy is a problem. Ryan was dairy-free for nearly 4 weeks. Wednesday I allowed him to have chocolate milk after school, and he had cheesy doritos for a snack after Tae Kwon Do. We didn't really notice anything different in his behavior. Yesterday he spent the morning at his grandma's, and I told her that Hershey's and Reese's were safe for him to eat (they are gluten free) because she keeps that stuff around and Ryan's been missing it. He spent all day there, coming home just before I had to take him to OT. He tried to get me to let him stay at home saying that he didn't feel good (I assumed he just wanted to play longer). But I loaded them all in the car for the 20 minute drive, Ryan was fine. But when we got there and parked, and I tired to get him out of the car, he started screaming at me that he didn't want to go it, that he didn't feel good, and then he threw up all over the back seat. It was all chocolate. Afterwards he told me that he'd eaten probably 20 Hershey's kisses for snack before he came home. Guess it's time for a talk with his grandma about MODERATION!!

Anyway, I got him home and cleaned up and he said he wanted to crawl into bed, so I snuggled with him in my bed and let him watch TV, which he did from about 6:00 until 8:30. During that time he got more and more "antsy"...he just could NOT stop moving around. Finally I sent him to his bed, and I laid down with him for about 20 minutes until I couldn't stand the movement any longer. This morning he had a glass of milk. All day he's been "off". I've seen more sensory-seeking and aggression from him that I've seen in the past 3 weeks combined. It's just been crazy for him! So we decided to go back to the dairy-free diet.

In a month, we'll do a gluten challenge, to see of it has an affect.

At least we know!!

Wednesday, January 30, 2008

It is day 25. Today we decided to re-introduce dairy, since he has a 4.5 day break from school. From everything I've heard, you generally can tell pretty quickly after you reintroduce something whether it is a problem or not....that once a problem food is out of the body completely, putting it back in even in small amounts usually causes a pretty strong reaction. So at lunch I let Ryan have 8 ounces of chocolate milk (the one thing he's really been missing). It's only been about 3 hours, but so far so good!

I had the mid-trimester conference with his teacher last night. First of all the whole darn scheduling thing pissed me off. I didn't get a form to fill out to request a date/time, so the classroom assistant emailed me and said she's put me down for Monday at 6. I replied it was fine, I'd get the sitter scheduled and rearrange things at home so I could be there. I had it all arranged (which took some doing), showed up at 6:00 and his teacher was cleaning up to leave. She said I was on her schedule for Tuesday, and that she had to be somewhere else in 15 minutes. She wanted me to come in Tuesday morning instead (the next morning), even though I had major errands to run and it was my only 2 hours this week without kids. I said I'd think about it, but when I got home I emailed her and said I'd be there at the 6:00 time she had me down for originally. The next morning she emailed back and said sorry, she'd given that time slot away already, could I come even later? Ugh. Why she could have stayed for 10 more minutes on Monday night, I'll never know. I went to a lot of trouble to get things set up for the time they gave me.

Anyway, academically he is fabulous. Knows all 70 sight words without hesitation (and we've never even practiced them, let alone made the flash cards they sent home each week!). Knows all of the beginning/middle/end sounds and can write the letters for them (although was marked off on a couple for making the letters backwards). Was perfect on the phonemic awareness, substituting letters to make other words out loud. Is accurate on counting syllables. Counts by 2's and 5's and 10's; can recognize and write all of his numbers (though the 7's are often backwards) up to 100. Can tell time, copies sentences from the board, forms his own sentences. Is reading easily in the highest level books each week. So he's doing very well.

Behaviorally he has improved since the beginning of the year. He still has real problems with personal space issues. We're working on that by trying to have him envision a "bubble" around everyone, and he needs to have permission to enter someone else's bubble.

Wednesday, January 23, 2008

Days 16, 17 & 18

We've had a bit more aggression and melt-downs, but some of that is probably attributable to my own bad moods the last few days.

Ryan's food intake has been right on target, totally GF and CF. Monday meals were cereal, PB&J (which he barely ate), and pork chops with sweet potatoes and butternut squash. Also snacky things like rice cakes, fritos, potato chips and snappea crisps. Oh, and he went to his grandma's house, and I let him take some Soy Delicious "ice cream" and some Envirokids rice crispy bars. Tuesday meals were french toast with maple syrup, turkey & ham sandwich (which he only nibbled), and scrambled eggs with bacon and sausage for dinner. Snacky things again: rice cakes, snappea crisps and fritos. I also let him have some McDonald's french fries after his psych appt last night. I know some people would advise against it, but he's been soooo good about not getting upset at not having some of his favorite things, that I feel the need to let him have *something*. Whether there is actually detectable wheat/dairy in them is debatable...I know of one very-dairy-allergic child (anaphylactically allergic) who has no trouble with McD's fries, and one celiacs adult who has no trouble with them, so I've decided to allow them in very small quantities. This morning, he had a bowl of cereal and some juice with GSE. He's had vitamins and acidophilus every day.

I've decided that on Feb 1 we will try out something dairy. I'll let him choose what he wants for 24 hours and then we'll stop and see how he reacts. It'll be over a weekend.

He had a good psychologist appointment last night. She's working on personal space with him. They discussed how each person has their own "bubble" space, that extends all around their body at arms length, and how he needs to have permission to be in another person's "bubble". They made a book that has reminders in it about what he can do with his hands, what he can't do with his hands, and how to stay outside of other people's bubbles.

Thanks to all of you who've made comments...I haven't figured out how to "reply", but I want to know I appreciate your taking time to read all this. Jessica, about the meeting with the principal, :-) Basically he said having another adult in the room would be too disruptive for the class, and that it's also a precedence he doesn't want to set for the school. I do think he was relieved to know that we've had some success with the diet and wanted to make sure the school was doing what it could in that regard (although there's nothing they have to do beyond keeping him from eating anything that I haven't sent in for his snack...he's not there for lunch). And it abruptly ended on that note. We have conferences next week, so we'll see what his teacher has to say.

Oh, and he had his record-breaking green card yesterday!! 7 in a row. :-)

Sunday, January 20, 2008

Day 15

French toast and scrambled eggs for breakfast. Apple-cinnamon rice cakes and cereal for snack. PB&J on brown rice bread, with snappea crisps for lunch (didn't eat much). EnviroKids rice crispy bar for snack, with vitamin water (from his basketball game). Chili with fritos for dinner.

Played a GREAT basketball game today. He's not pushing or shoving at all, like he was when he played soccer. He really hustles too! Had a few incidents with M&L today, but all of them provoked (unlike before when he was nearly always the provoker). E.g., L threw a book at him, so he threw it back at her. No unprovoked aggression or unexplained meltdowns. It's been a good weekend!!

Saturday, January 19, 2008

Day 14

Cereal for breakfast, PB&J for lunch with corn tostitos and salsa, and hot dogs with mixed veggies and pears for dinner. Fritos and mixed nuts for snacks. V8 Juice for one meal, water with all others.

He's still being very well behaved. He's had two mini-meltdowns in the last 24 hours, but they were really *mini*...less than 5 minutes of resistance and then compliance. He's been in a very good mood. I am so much enjoying life with my kids right now!!

Prayers that the Border Patrol officer killed in Yuma isn't the husband of someone I know. Anyone who can reassure me that it isn't Mr. Smith, please do so. Edit...thank GOD it's not him, although it was someone that he worked with, with small kids. Keep him and your family (and the Smiths) in your prayers.

This week: psychologist on Tuesday afternoon, OT on Thursday afternoon. No school on Monday.

Friday, January 18, 2008

Day 13

Banana bread with apple butter and peach-mango juice for breakfast. He woke up easily at 7, wanted to make sure he had time to play before school. Very easy-going and cooperative.

And HE DID IT! He kept his green card today, which makes it a totally green week, and his teacher let him choose a prize...he chose an Indy Colts Super Bowl poster!! ;-) That's my kid!! No school on Monday, but if he keeps his green card on Tuesday it will be a record for the year. He has a new NASCAR Hot Wheels waiting for him if that comes to pass.

More banana bread with apple butter for lunch, with some Fritos. I know, great nutrition!! But he's eating, which is a good thing.

Update later...

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Thursday, January 17, 2008

Day 12, GFCF - Thurs Jan 17

I made french toast for the kids this morning, with homemade GFCF bread, eggs, almond milk and cinnamon, with maple syrup. Ryan *loved* it, said it was better than the french toast sticks we used to buy from the store (you know, the battered & fried ones!). It was very quick to do, so it may become one of our morning staples. He had some V8 Fusion Mango-Peach juice with GSE, along with his multi-vit and acidoph.

If he gets a green card today, it will make 5 in a row, and his record is 6 in a row. If he manages to get a green card tomorrow not only will he match his record, but he will get a prize at school for being "green" all week! That's only happened twice before, and one of them was a short week. I'm *very* cautiously optimistic, afraid to get my hopes up but also very hopeful that this diet is working and this isn't just a coincidence.

Before I pick Ryan up, I have been asked to stop in and talk to the principal. *Finally* (it's been 8 days since they made the decision) they're getting around to telling me that they aren't going to allow me to pay for and send in a support person for Ryan. I don't know how I'm going to respond yet.

Ryan's Tae Kwon Do instructor has recommended him for promotion to yellow belt, and the testing is on the 26th. Only thing is, they require a note from his school teacher saying that he has passing grades, doing satisfactory work, and is respectful in school. The first two are no problem, the last one....ehhh, I don't know if she'd say yes or no. And I don't know if she says "no" if that would mean he couldn't pass to yellow belt.

More later....
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Ryan had a great OT appointment, I just LOVE his therapist. They work well together. He didn't end up eating dinner, as he said he just wanted some banana bread that we'd just made, so I picked up cheeseburgers for the twin-kies. He's just been so darn enjoyable all day, I feel like I have a whole new child! I saw glimpses of this before, but I've never been able to just relax and enjoy it. He's played with M&L tons this week, and not one single time has he been aggressive with them. I've almost stopped paying so close attention to their interactions. I've always had to keep such a close eye on them because almost inevitably something would happen. Now it's Lily who's the aggressive one of the bunch!!

Ryan *did* get his green card today! He was very excited coming out of school, and I thought it was because of the green card. "There's something in my backpack you're just going to LOVE, Mom!" "Oh, is it...is it a GREEN CARD?" "Oh, yeah, that too. But I found something for you in a magazine and I saved it for you! Just wait until you see it!!" I was cracking up...even more so after we finally found what he was looking for at the bottom of his backpack. It was Jimmie Johnson's Spongebob Squarepants-themed NASCAR. He did a great job cutting it out, too!! :-) I put it on my rearview mirror, and didn't tell him how much I despise Spongebob....;-)

Wednesday, January 16, 2008

Day 11, GFCF - Jan 15

Ryan had another awesome day at school! And is currently having an awesome afternoon playing with his siblings.

Breakfast today was GFCF cereal and water. I may start encouraging him to have some toast with pb most mornings, I think he needs the protein. No valerian root. He had two snack bars for snacks. Rolled up all-natural ham slices for lunch with some snapea crisps, banana chips and meringue cookies.

Dinner was GFCF hot dogs and veggie chips, with cocoa meringue cookies for dessert. Also he had Fritos for a snack after Tae Kwon Do.

Three entire days of no melt-downs and very very little aggression. YAY!
Recently I split with a large group of online friends, mostly over Ryan's situation. The hard part of being in a group of online friends is that you can't just separate (even for a little while) from a few of them...it's either all or none. It's a group of about 60 women, and many of us had been around since we first found out we were pregnant, in Feb 2001. It wasn't a decision I made lightly even though I made it quickly, but a couple of days later I still feel it was the right move. But I feel like I've cut off a vital body part.

There were two main issues that were a problem for me. The biggest one is that several of the moms on the board have kids who are in a classroom with a child similar to Ryan, and that child is bothering the kids of my friend(s). They use our online group to vent in these types of situations and it's just gotten too painful for me to face that side of reality. I'm not sure that makes any sense, it makes sense in my mind but I can't easily put it into words. It's all I can do some days to deal with Ryan from his end of the situation, knowing that he's bothering some of the kids in his class and seemingly unable to be able to reign it in. But to be faced full on with the impact of how he's acting, when I'm already doing everything I know to do for him (and he *is* improving) and we're stuck in this painful school situation for right now...it's just to painful for me to be involved (even just reading) with their situations right now. And I want the group to remain a safe place for them to vent, without feeling like they can't lay it all out there to spare me. Also, I can't read about those situations without commenting about how hey, that kid sounds a lot like my son, he may not be doing it on purpose; it's likely they aren't really looking for that kind of response, they likely aren't wanting to put a real face on the other kid, they just want to vent and relieve some stress about their own child being impacted. I totally get that, and respect that.

And then there are the very well-meaning women who, bless their hearts, try to help me with ways to handle Ryan. Only, they aren't familiar enough with SPD and/or Asperger's to really know what is going on with these kids. I end up feeling like my ways of handling Ryan are being challenged, even though my decisions are made with great input from his child psychologist and occupational therapist. It's totally different when they are an SPD or Asperger's mom (Maureen!)...those suggestions are always helpful and fully welcomed. But when they *think* they know and make statements or ask questions to the tune of "don't you think your doing such-and-such is causing this problem?", it's very difficult to either not doubt myself (which I'm the queen of to begin with) or make sarcastic comments, even though I know in my heart they mean well. I don't need any of that right now, not in the place I'm currently at in my heart.

Removing myself from the situation just seemed like the best answer for us all. But it's painful in it's own way.

Tuesday, January 15, 2008

Day 10, GFCF

10 days down, and I can't say I've seen *any* difference, let alone a significant difference in Ryan. Yes, he had that little bit of gluten a week ago, but other than that, absolutely no gluten, absolutely no casein. It's going to be very difficult to keep this up if it doesn't seem to be helping, but I've given it until the end of the month (so 16 more days). Almost every account that I've read about GF and/or CF helping has said that they had seen definite signs of improvement within a few days, even if they didn't see the full affect for 2+ weeks. He's getting daily acidophilus and GSE to combat yeast, plus a kids multi-vitamin with a higher dose of B-complex vitamins. We've almost eliminated HFCS too. All in all his diet is healthier, so that's good, but I just can't see keeping this up if it's not helping him in any detectable way. On Feb 1 I plan to let him have regular bread and see how it affects him. Or maybe milk first, lol...whichever one he wants!

Today, he had scrambled eggs made with rice milk, and GFCF toast for breakfast, and he ate quite a bit of it. Water to drink. He had a really good morning, before and during school. He kept his green card at school, but we don't know if it was "with a message" as he says...sometimes they'll allow him to keep the green card with a few extra warnings if they can tell he's really trying and they'll note it on his folder (the "message"!). They forgot to send the folder today.

He had peanut butter with all-fruit, pb with apple butter, and pb with honey for lunch (half a sandwich of each as he couldn't decide which he wanted!), plus some snapea crisps and an apple/caramel cookie bar (GFCF). With some V8 juice. Since then he's had some freeze dried banana chips and some meringue cookies. He's had a really good, calm afternoon and we did about 6 pages of homework after school, before we picked up M&L. That one-on-one time has been really good for him.

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OK, so I have to laugh at myself. Right after saying "I can't say I've seen *any* difference" while being GFCF, I say that he had a really good, calm afternoon....which is actually not all that common for him. AND he had a really good, calm evening also. Actually it's been a terrific day for him! He was happy and calm and playful, didn't hit ANYONE today, even in play. Amazing. Oh oh oh...and he managed to tie his shoe perfectly for the first time! Then he said it was too hard and wouldn't do it again, but he DID IT.

Dinner was pork chops, GFCF pasta and "cheese" (it was gross, by everyone's standards), and peas. Kids didn't eat much, but then they never do at dinner.

Today made the third day in a row for green cards at school. I think his record is 6 in a row. I skipped the valerian root today, as I was afraid that when it wore off it was making him more antsy than he would have been otherwise. Proved to be maybe a good decision.

Monday, January 14, 2008

School

So I haven't officially "heard" from the administration that the school denied our request for a support person, all I have is the comment Ryan's teacher made in passing that it had been denied and she thought I knew already (on Thursday). The decision was made on Wednesday morning, and it's now Monday evening. I returned an email from the resource director and mentioned that I hadn't been called about the decision yet, and she said the principal wanted to give me the decision himself and she didn't know what the delay was. I'll bet he comes back and says he doesn't have our correct phone number, but I've given the school the new one three times, plus gave it to his teacher AND to the resource director. I don't know what I'm going to say to him yet.

GFCF Day 9

I was out of town for 3 whole days, for a much needed break! DH has assured me that Ryan remained GFCF the entire weekend, even making him some banana GFCF muffins. I had left him pretty well stocked, so it hopefully wasn't that hard to do.

Today Ryan had a couple of bites of waffle with maple syrup, and a few handsful of GF cereals. I gave him the juice with valerian root in it just as he was leaving, because it seemed like he was "breaking down" around 11:30 every day at school when I was giving it to him at 7 rather than 7:40. We'll see if there is any difference.

For lunch he had PB&J, apple cinnamon rice cakes and ice water. Then he munched on some cereal for a snack. Dinner was chicken with brown rice and peas/carrots. He tried some chocolate hemp milk, but it was room temp and he thought it might be better cold. We'll try again tomorrow.

He had a pretty good day at school, teacher just said he was annoying some of the kids with his pencil. He was great after school, and I managed to get him to do 6 of his homework pages for the week (he has 15 pages total, some left over from last week), with very little resistance. We "made up" a fun new game! DH put the canvas cuddle swing from IKEA up this weekend, and Ryan loves to spin around in it. We wound him up in the swing, and as he was unwinding, we would toss a ball back and forth each time he was facing me. We did that for probably 30 minutes! And we played basketball together...he's really good!! He was pretty sad that M & L decided they didn't want to play with him, but he remained calm and didn't hit them and we discussed the fact that it might take them some time to come around to want to play again, and also sometimes other kids won't want to play what he wants right at the moment he wants it. It's a hard concept for him to grasp, and he was really upset about it. He did end up having a meltdown in the early evening, but once it was over he was happy and cheerful again, even trying to help us get the tantrumming twins to bed.

Thursday, January 10, 2008

GFCF, day 5

Ryan woke on his own about 6:30. Breakfast was a GFCF waffle and maple syrup, along with a bit of dry GFCF cereal, and V8 Fusion juice with GSE and valerian root in it. He also had a vitamin, acidophilus cap and Motrin for his knee.

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Dang it, dang it, dang it. As if this day isn't bad enough, Ryan just found three wheat bread crusts and ate them. I was trying to use up the last of the wheat bread and gave M & L pb&j on it for lunch (Ryan had lunch at school), and I accidently left the crusts they didn't eat on the counter. AARRGGHH.

I feel so darn wiped out right now. I've had to deal with one huge meltdown from him (before he ate the crusts), and one from Lily as well. I'm trying to get packed so I can go out of town tomorrow morning, and I can't even get one load of laundry together and in the washer without being interruped three times.

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Damn. DAMN. I no longer think his current school really has *his* best interests at heart. I know there is only so much they can do, with the money they have. They just don't have the resources that public schools do. *HOWEVER* I decided to bite the bullet and see about hiring a "shadow" for Ryan, for 6-8 hours a week, a support person who has experience with SPD and can intervene when needed but more so that they could give me a better, more detailed picture of what Ryan is doing. Sounds like a good idea, right? The school turned me down. Even though I would be paying this person out of pocket, they wouldn't have to do *anything* but allow her in the classroom, they said NO. They don't want to start a precedent. Not even for 6 freaking weeks.

Wednesday, January 9, 2008

Note to Ryan's Teacher

He received a "notice of concern" for grabbing another child and scratching him.

On the back of the notice, which I have to sign and return, I wrote this:

"Ryan informed me that this child "dared" him to hit him, and when Ryan did, this child threatened to tell the teacher and that Ryan would get in trouble. Ryan grabbed the child in panic and scratched him unintentionally in the process.

This is the third time this year that one of two boys has "dared" Ryan to hit them. I would like to know that this behavior is being addressed. It doesn't negate Ryan's wrong-doing, but to me this behavior is also unacceptable, especially when the kids know that Ryan will get in trouble for it.

Ryan did not even know the concept of "dare" before he started Kdg at StMM. So it's hard for me to really fault him for not knowing that just because a kid says "hit me" doesn't make it OK to do so. "

GFCF, day 4

So far, so good with the diet. No problems with Ryan accepting it, although it is a bit more difficult to find him something to eat quickly. This morning I kept him home from school to take him to the doctor about his knee. It had a definite pocket of fluid on it last night, not so much this morning but I took him in anyway. The ped send us for an xray. All in all we were gone for over 3 hours, me and all three kids. Thank goodness for Leapsters with headphones. Ryan was really good the whole time. He even went back with the xray tech all by himself while I stayed in the waiting room with the twins. Anyway, GFCF waffle with maple syrup for breakfast. I didn't anticipate being gone so long, and we only had about 15 minutes to find a snack between the ped and the imaging place, so I got them all a hashbrown from McD's...and now I'm afraid to look it up to see if it's GFCF. I need to remember to stash some appropriate snacks in the car.

I had a horrendous migraine the whole time, and when I got home I turned on the TV for the kids and dozed in the recliner (with the twins on top of me, lol) for awhile. I got up to make them lunch...PB&J, raisins and potato chips (hey, they were Whole Foods brand and trans-fat free!!) and V8 Fusion juice. Then I dozed some more until around 3:30. That's 4 hours of TV, folks...way too much. I asked DH to bring home Arby's sandwiches for dinner, and just gave Ryan the roast beef. But just before dinner (5:00) he had the start of a humongous meltdown. Started with something at the dinner table between him and dad and he ended up hitting his dad, so dad took him to the recliner for a time out, needing to hold him down until he calmed enough to sit on his own. DH couldn't manage to get him settled, so I took him myself, got him calmed down and let him go only to have him explode again about 2 minutes later. Hold down again, calm again, went to dinner table and had a little spat with Max and DH took his plate away from him, and he went off again. I had to hold him down for 20+ minutes, then I couldn't take getting beat up with his head anymore so I hauled him up to his room and offered to lay down with him. Finally got him calm, he went back downstairs and got into it again because Max wouldn't give up the swing right at that moment. Held down again, got head butted a dozen times again, hauled him up to his room again and locked him in. Told him I'd come back in when he had his jammies on. He yelled and screamed for another 30 minutes while I had my own breakdown on the steps. All this time Lily was having a hissy fit too because her dad wouldn't get the play-doh down for her until she cleaned up her crayons and coloring books.

*Finally*, around 6:30, Ryan was calm enough and in his jammies that I went in to him and snuggled on the bed with him. I took him some juice with a couple droppers of valerian root. He was really sad, and I talked to him for a few minutes about how I knew all those feelings were pretty scary to him. And that I only held him down to keep him from hurting me and himself. I asked him what he wanted to eat, and he asked for popcorn and his vitamin. I gave him that and some books to keep him busy in his room until bed time, I didn't want him downstairs getting all riled up again.

So, I don't know what's going on with him. This meltdown could be from anything. Not enough exercise, etc. today. Withdrawal symptoms from gluten/casein. Yeast die-off. Coincidence.

You know, for the longest time I assumed Ryan's meltdowns were a symptom of a strong-willed personality, and of poor parenting methods. So I read book after book, and finally sought help, wanting ways to parent him that would keep this stuff to a minimum. You'd think that I would feel relieved to find out that it's not due to our parenting at all (well, I'm sure we could do better), but you know, I'm not relieved at all. Why? Because now I know I *can't fix it*. It's beyond MY control. And that scares the crap out of me, and it makes me angry and sad and so damn frustrated. I CAN'T FIX IT. And I want to so badly. It's so hard to get out of that mind-set that there's got to be something that we're not doing yet that we can do to make this all better. I'd so much rather have the power within me to fix this for him, rather than rely on a myriad of others who, while most of them have his best interests at heart, they don't know him heart and soul like I do. They're not the ones lying awake worrying every night, researching every single idea and method. I have support, but all the support in the world isn't going to fix this for him. And because we don't know for sure what's going on with him...does he maybe have some sort of emotional disability??...or is this just delayed emotional maturity???...I have no prognosis for him. I know there are kids out there who are much worse off than my son, I'm sure many would sell their souls to *only* have the problems that Ryan has. But this is my baby. MY BABY. And I can't make it all better for him. I feel like I'm slogging through all of this, trying this or that, no real plan, not knowing what's actually working and what isn't. It's not that I can't see the forest for the trees, I can't see the trees for the damn leaves.

Tuesday, January 8, 2008

More school-choosing drama

It's so ridiculous I can almost laugh about it now and assume it won't happen...but I'll have to be vigilant to make sure.

I called the public school today, our home school that doesn't have room for Ryan this semester. * (explanation below). I need to register him there for next school year as one of our options; registration happens next month. I wanted to clarify a few things, one of them being their statement on their website that to enter 1st grade, a child needed to have completed an accredited Kdg program. So I asked her what we would do if Ryan isn't able to complete the school year at StMM, since we really don't have any other suitable school options for this semester. She told me that they would START HIM BACK IN KINDERGARTEN!!! And after awhile they would start moving him up, subject by subject as he showed mastery in them. Ummm...I can think of few things that he needs less than going back through Kindergarten, starting out with one class and slowly moving to another. A child with adjustment problems does not need to be moved around that much in a short time. The constant change alone would cause him stress, let alone the tediousness of starting out having to go back over the basics (which from what I understand, the public school has to start out even more basic than StMM did.) We did talk about the assessment process, and I asked if that would have any weight in their decision whether to place Ryan in K or 1, and she hemmed and hawed about it, not very encouraging. Of course, she doesn't know Ryan and even though I've shared with her the independent assessment results, she didn't sound convinced that Ryan would go directly into 1st grade if he doesn't complete the year at StMM. Just another stressor for me.

For those who don't know Ryan, he is reading fairly fluently (more and more every day) and does very simple multiplication already. He's got the concept of addition and subtraction down (still has to think them through, but does so without help). He'd be bored out of his mind if he had to sit through reviewing colors, numbers, letters, etc that they do in the public school Kdg. They have to start there though, because they have kids who are still 4 when school starts....heck, Max and Lily could in theory start Kdg there in the fall.

* The public school situation here is this: we have a very large system, nearly 90 elementary schools. There are several "clusters" of schools, and every address in the county is assigned to one of the clusters, and within their cluster they have a "home" school. Their home school is where they register, but they aren't guaranteed placement at that school, just at a school within their cluster....although in reality, almost everyone who applies during the registration period will get placed at their home school if that is their first choice. However, any time after that registration period and some schools (or some grade levels in some schools) will be full, and so the child gets placed at another school in the cluster. So we *could* attend public school right now, but the closest school they could place us at is more than 12 miles away, a 25-30 minute drive each way (it's downtown, lots of traffic). It's just not a feasible option.

Day 3, GFCF Diet

I had to wake up Ryan a bit this morning, at around 6:55. He woke easily and came downstairs for breakfast. Decided on a GF waffle and some dry GF cereal. He found his old Cars leapster cartridge on the table, so decided to play that and eat. Gave him 1 ml of Super Calm (Valerian root and other herbs) in his veggie/fruit juice, which he drank easily; plus an acidophilus cap and multi-vit. He was calm and in good spirits this morning, no negativity at all. Warmed up clothes again...:-) For lunch I sent PB&J on tapioca bread, peanuts, a GF cookie bar and juice. I forgot to remind him not to get milk today, I hope either he or his teacher remembers. He will need to tag along to Max's gym class this afternoon, but he does enjoy watching (and I'll bring along the Leapster and headphones!).

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Well, not a good morning at school. He was fine but for one incident. One boy that he's had problems with all year (he's sort of conniving but then cries when kids pick back at him), dared Ryan to hit him in the stomach. Ryan did, but not very hard and the kid immediately told Ryan that he was going to tell on Ryan so Ryan grabbed his arm to stop him and the kid started crying. So Ryan gets another notice of concern, which pretty much means that they'll ask him to leave at conference time at the end of January. I just want to pull him out now. But if I leave him through January, the chances are good that they'll allow him to be classified as "completed"...if I pull him out now, that might mean the public school will make him start out in Kdg next year. Which is the lesser evil??

His knee is really bothering him. His therapist noticed tonight that there's excess fluid around it. I'm glad she looked, I don't think I would have noticed it but it's definitely there. He's really limping now, walking just on his tippy toe and he never lets up on the limp so I know it really hurts. He's a trouper about it though, only complains after he's been sitting awhile. I think I'm going to keep him home tomorrow and either take him to the doctor or let him rest with it elevated. And no tae kwan do tomorrow...which eases our schedule quite a bit.

He had just one meltdown this evening. I can't even remember what it was about [oh, I remember, he was very disrespectful to DH, telling him he was going to hit him, and yelling that he was stupid eyeball...his favorite insult these days!]. DH gave him a time out and he refused and threw a fit, so I had to do a hold down until he calmed down. It was over as quickly as it started.

Dietary stuff is going well. He's not having any problems accepting it. He even had less juice today, his decision. 3 days down, 24 to go.

Monday, January 7, 2008

Day 2, GFCF diet

Ryan woke us up at 7:10 this morning, which is *late*...for some reason our alarm didn't get set. Ryan wanted to watch TV, so I let him watch PBS while I gave him some cereal and juice. I popped his clothes in the dryer and he let me put them on him with no resistance (man, what a lifesaver warm clothes has been!). I had to push him to continue eating and drinking, and on any other morning I'm sure he would have pushed back (figuratively) and taken a defiant stance, but this morning he simply said "I'm eating as fast as I can, Mom." and "I really don't want any more juice." I had not one single bit of resistance this morning, not one look of defiance, not once when I had to avert a possible meltdown. He's had a really good morning, I'm hoping it continues through his 4 hours of school.

I sent him rolled up ham slices, a piece of GFCF homemade bread, potato chips, a GFCF cookie and a juice box for lunch.

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Ryan did have a good day at school; he came home from school with a green card. He said he felt "calm" today. He came home and chilled for awhile, choosing to watch old college football games on the sports channel. He had another GFCF cookie for a snack.

He did end up having 3 little meltdowns this afternoon, all of them related to the swing and his siblings. I contained him during the meltdowns until he had control of himself, then let him go, and he was fine immediately after each of them. He went outside for a little while. I had him do one page of homework before dinner. Dinner was hot dogs, peas, corn and potato chips. ;-)

Tomorrow we need to cut back on the juice.

Sunday, January 6, 2008

Day 1, GFCF diet

Ryan woke before 7:00, asking to watch TV downstairs. In the process of trying to get him to go back to bed or do something quiet, he woke the other two. They all had GFCF cereal for breakfast. Ryan and Lily drank chocolate rice milk, Max had plain rice milk...all seemed fine with it, though Ryan said he really didn't like it. Ryan has been grumpy and angry this morning for no apparent reason. At 10:00 I gave him a snack of GF pretzels and an all-natural energy drink with caffeine...about 30mg of caffeine total (an 8 oz cup of coffee has 80-100 mg, for comparison).

5:00pm - The caffeine didn't seem to have a negative affect. He's been pretty calm most of the day, but it's hard to say if it was due to the caffeine or just his mood and disposition today. I *may* try it tomorrow before school....if I'm brave enough to! Ryan had rolled ham slices, potato chips and GF pretzels for lunch, with some juice. I made some Bob's Red Mill bread in the bread machine, and Ryan is satisfied with it. He also tried peanut butter and jelly on a slice of Ener-G Tapioca bread, and said he'd be fine with that for lunch at school. YAY! Lunch taken care of. I bought some peanuts, sunflower seeds, and soy nuts to see if he would eat them. He didn't think he'd like sunflower seeds ("aren't we supposed to plant these?"), but he was surprised and really likes them. So I can add nuts and seeds to his lunch also. Tonights dinner is pork chops with cornflake coating, sweet potatoes and peas.

I've been researching vitamins, minerals and supplements for him. I do think the "leaky gut" theory has some merit, and at worst it's not dangerous to treat it as such. I bought some acidopholus to give him every day. Also some children's Omega-3/DHA; a children's multi-vitamin with extra B-complex; and some grapefruit seed extract. These are all things suggested by some SPD advocates.

Edited to add:

The rest of the day was almost perfect for him. He had no meltdowns, and only a little bit of resistance to taking a shower that lasted about 2 minutes (the resistance, not the shower!!). Mostly that was due to his dad getting his electric guitar out shortly before that and Ryan didn't want to miss anything. He was in bed asleep at 8:30.

Saturday, January 5, 2008

Ryan's day - Sat Jan 5

Ryan was awake around 7, crawled into bed with us until about 7:45 and DH got up and made them breakfast. Ryan had waffles with maple syrup and milk. He also had one (homemade) chocolate chip cookie and some animal crackers for snack in the late morning. I didn't get up until about 9:00, but before that I heard quite a bit of commotion from all of the kids. Ryan was watching a movie when I came down. He dressed himself with no problem.

At one point Ryan hurt himself after sliding across the floor on a blanket. He was screaming/crying and came to me for comfort. I comforted him, but he continued to cry as he walked into the other room and on his way there he smacked Max on the back. This seems to be a common occurrence, hurting someone else when he gets hurt even if that person wasn't involved or even around.

I took Ryan with me to the grocery store. We stopped at Wendy's for lunch on the way. He ate 4 chicken nuggets with honey, all of his small fries and some of mine, and half a container of chocolate mile. He was a big help in the grocery store, finding gluten-free items to try out. I let him pick out some jelly beans, some to eat and some to save....they're HFCS and artificial color-free. :-) He was excited that I allowed him to unlock the door to the house by himself for the first time. The rest of the family was gone, he complained about it being "boring" and all he wants to do is play Wii (but he can only play with his daddy...I have stayed away from it on purpose!), but he settled down and is now playing cars by himself.

more to come...

Dietary Changes

We're making the big surge to go gluten-free, dairy-free, HFCS-free and artificial color-free. I'm going to try to implement this through the end of January. We will all eat that way at home, DH and I will probably indulge in grains and dairy when we are out alone, and I think I will allow M&L to eat whatever is available when they are at preschool and grandma's house without Ryan. Ryan, however, will need to avoid all of this stuff completely. I need to figure out what to send him for lunch at school. Yikes!! But I have to see if it helps. I am sooooo tired of all the angry outbursts and defiance.

I'm also going to get some Water Joe (water with natural caffeine) to see if the stimulant will calm him down a bit (same affect that the stimulant Ritalin has with hyperactive kids).

Friday, January 4, 2008

Ryan's day - Fri Jan 4

Had to wake R this morning, he came downstairs a little after 7:00. He ate only a spoonful of his oatmeal this morning, and a swig of milk. He dressed easily with warmed clothes. His mood was a bit feisty. He was reluctant to do the sensory obstacle course this morning, until I pointed out the new indoor swing that we could use with it. He did three rounds of the course, but was very loud and a bit manic during it. I was hopeful that it had taken the edge off his feistiness for school. He had to get school lunch today because he wasn't allowed to use his lunchbox (my decision), so I'm not sure what he had to eat. He had a candy cane in the car after school, leftover from yesterday (from his teachers). He was in a good mood coming out of school, but nearly tackled me when he saw me (not unusual for him). I found out that he got his green and yellow cards pulled this morning, for personal space issues and general out-of-order stuff. Thankfully he didn't hurt anyone.

The kids came in the house and immediately wanted to swing. I told them they could swing after the legos, books and cars had been picked up (about half the mess on the playroom floor). Lily decided to watch Dora instead, Max and Ryan played together and separately in the playroom. During the time before they cleaned up, Max was playing with the part of the swing that he could reach, and Ryan was yelling at him to leave the swing alone (I'd told them not to touch it). Max was on the step-stool reaching up holding onto the swing (I'd looped it so it was to high to use until I wanted them to) and Ryan pushed him hard from behind, causing M to lose his balance and fall hard on his hands and kneew. I saw it, immediately told Ryan to step away from the swing, reminded him that it wasn't his job to make sure Max wasn't doing something he shouldn't, and to go sit on the step for pushing. As I was helping Max up, Ryan turned around and kicked me hard in the shin with that belligerent look in his eye. I ended up smacking his butt because I am so tired of him willfully and purposefully hurting me. He went straight up to his room after that, yelling at me, calling me names ("stupid eyeball") but he stayed there for about 20 minutes. After that, I managed to withstand a few quarrels and whining about cleaning up, but Ryan got them all started and they cleaned the requested items mostly together. I had them take turns swinging, asking Ryan to go last in the rotation and then he'd get more time to swing. He agreed but wasn't patient in the waiting (but neither were the other two). No other problems that I can remember.

We went out to dinner, where he ate a few chicken nuggets and french fries and he was mostly very well behaved. I praised him as we were leaving, and he said to me.."I was the most respectful one here, wasn't I?" Yes, yes you were. :-) At home it took some coaxing for him to get his jammies on, but he did and he sat down and read to me for a few minutes. He was excited for me to be the one to snuggle with him on his bed. He was asleep in less than 5 minutes, at about 8:10.

Thursday, January 3, 2008

Ryan's day - Thurs Jan 3

Had to encourage him to wake up, at about 7:00. He came downstairs in a good mood. Breakfast - oatmeal, one large helping plus about 4 oz of milk. Got dressed on his own, no resistance, after I warmed his clothes up with the iron! He did 1.5 rounds of a sensory obstacle course before he decided it was enough. Gathered his school stuff, put on his hat/gloves/coat/glasses with no resistance. Went off to school in a good mood, on time.

Picked up Ryan at 12:30. He got his green card pulled for hitting Graham with his (soft-sided) lunchbox. Told Ryan that he couldn't have his lunchbox for a week - either had to use a paper bag or eat school lunch. He lost a tooth during school! He was in a pretty good mood when I picked him up. He had PB&J, Annie's cheddar bunnies, a banana and two chocolate chip cookies for lunch at school.

10 minutes after we got home, I asked him three times to stop swinging his scarf around. [This is a habit he has and he often hurts someone that way] I got up to remove the scarf from his hands and he hit me. I told him he needed to sit on the time out step because hitting is never acceptable, and he refused and hit me again. So I hauled him over to the step and ended up having to reverse-bearhug him to keep him from hitting me more. He managed to heat-butt me *hard* on the chin, so I let him go and took myself off to work off my anger, locking myself in the bathroom. I told him he needed to go to his room. He screamed and raged outside the door, until his dad walked in (early from work) and without a word he stormed up to this bedroom. A couple of minutes later he came down, and (can't remember why...) he ended up hitting me again and starting in on the aggressive behavior. So I hauled him with me into the recliner and just held on to him, holding his arms, holding down his legs with my feet, keeping my (very sore) chin out of the range of his head. It took about 10 minutes for him to quit raging and fighting me, and he told me he was done. I checked it by asking him to do something menial (pick up his coat off the floor) and he did. After that it was as if nothing happened and he was perfectly fine for the rest of the afternoon.

He spent 2 hours at Grandma's house, then I picked him up for therapy. He was disappointed that I didn't have his candy cane nor my money (wore the wrong jacket) but accepted a different candy cane from grandma to eat on the way to OT. On the way home he said he was very thirsty and asked how long before we would get home. I replied "7 minutes" and he said "I can certainly wait that long." :-) He had a couple of chicken nuggets and some mac & cheese for dinner. Before bedtime he had two altercations with Max, both due to Ryan trying to "parent" Max, keeping him from doing something he wasn't supposed to by hitting him. I reminded him that he needs to leave that stuff to me unless Max is hurting himself. Ryan kept pulling on the strings to my hoodie, very annoyingly, and I told him to stop three times. He kept it up, baiting me, so I told him it was time for bed. He resisted, but I told him that he needed to get his jammies on and I would *think* about allowing him to stay up his normal time based on that. He managed to do so, and I told him he could go play UNO with his dad while I put the twins to bed. He was perfectly content thereafter and went to bed with no resistance at about 8:10.
I talked with Ryan's psychologist shortly after his appointment with the pediatrician. She said it's our decision whether or not to go to the Child Evaluation Center, but she has had a lot of dealings with them and doesn't have that much faith in their processes. I talked with her also about the STAR program, and she said it looks really good on paper, but she hasn't known *anyone* to actually get any decent services from them. And so I did some consumer research on the program and what she says seems to hold true; every comment about them was about being disappointed, about bad customer service, about being led on and the dead-ended. I guess my own experience holds true as well, since I called them and left a message and they never returned my call! I haven't received an appointment for the CEC yet, and I'm thinking I won't even bother (the CEC and the STAR program are somehow connected, also.) Dr. G and I talked for a half-hour about my concerns, whether he does have AS or not, whether it even matters, and where to go from here. She's really disappointed that StMM has forced us into half-days and that I don't have any other options for right now for schooling. As far as where to go next, she's going to work with him on anger management. That is the one thing that is affecting our family life, and it's *huge* some days...and it's making its way into the personalities of the other two.

He went back to school today, for his first half-day. Really it's more than half-day, it's 4.5 hours out of a 6.75 hour day, so he's just missing a little over 2 hours. If this doesn't work out, he'll just have to stay at home. Thankfully Kdg isn't mandatory in KY. For next year, I think our only two options are the Friends School (with much smaller ratios...they only go to 2nd grade and class sizes are about 12 with 2 teachers) and our neighborhood public school. I'm going to apply to both, register with both and then make the decision later on. That's assuming the Friends School will actually take him...I get the feeling they would, but it's no guarantee.

I'm going to start recording his daily doings, so I can see if there is anything that stands out. I'm seriously thinking of taking him gluten free/dairy free, and maybe getting him tested for other food sensitivities. Many parents who have SPD children find that treating their kids for systemic yeast and whatever food sensitivities they come up with has really made a difference...however, most of those have kids with moderate to severe SPD and Ryan's is pretty mild. The cost/worth ratio might not be that great.

He's having fun on the horse in hippotherapy! He really enjoys OT and the therapist. That's all for now.