Tuesday, December 18, 2007

I took R to the pediatrician today, thinking that I need to get everyone involved in whatever treatment plan we come up with. He's not really happy that the psychologist didn't use an Asperger's rating scale (she said she hasn't found one that she really likes), and doesn't have anything about the qualifications in the DSM in his psychological assessment report. I talked to a few people last night at a dinner, one works for First Steps, one has a son who is HFA/AS, and one who is a psychologist and works at our Autism Training Center. All three of them were surprised that he received this diagnosis without a rating scale and without DSM qualifications. Now, I don't know that she didn't figure the DSM in her final assessment, but it isn't in the report at all.

Anyway, the pediatrician is going to fast track us to a Child Evaluation Center, specifically to a developmental pediatrician who will evaluate Ryan and then decide what other evaluations he needs (speech pathologist, OT, etc.). This will in essence be like a second opinion, I guess, or maybe just more in-depth evals, I don't know. But I'm all for more evaluations.

My last chance school didn't come through for me. I'm not sure what we're going to do now. The only options are keeping him at StMM for half-days, putting him in a public school (only to change schools in the fall, because our "home" school doesn't have room for him right now), or home-schooling him. Tomorrow I need to call and find out which school he would be at if I put him in JCPS right away, that will make a difference in my decision.

Ryan had a bad day at school yesterday, knocked some poor girl to the ground for no reason during PE. I got a stern note from the PE teacher "This behavior will not be tolerated." Well, duh. He was apparently off-task most of the day, which is unusual. The night before he'd had a meltdown at bedtime and didn't end up getting to sleep until 2 hours later than usual. I don't know if that had anything to do with it or not. This morning he was defiant and shrieky about everything, so I made the decision to keep him home from school. It makes me nervous to send him when he's having a rotten morning, and today was a pretty unstructured day. He missed his holiday party and gingerbread building with his 6th grade buddy, and I feel terribly guilty about it, but he was in such negative shape this morning I didn't want to risk another day like yesterday. I'm not sending him for the short day tomorrow either. I don't know that he'll go back to that school or not in January. Ugh.

Monday, December 17, 2007

So here we are.

I've accepted the Asperger's diagnosis. And it's just replaced one weight with another. The weight of not knowing what the heck was going on with him is gone, but now I feel weighed down with this life-long diagnosis for him. I feel the stress of making sure we do the right things for him, because it can make a noticeable difference in his future...but I don't know what the right things are. I want to get started, but I'm hesitant to make the phone calls. I'm afraid to ask questions because I'm afraid of the answers. I did mention to some Asperger parents how I really think Ryan's situation is pretty mild and the unilateral response was that it gets "worse" and more noticeable with age, especially once they hit the pre-/teen years. This isn't something that can be "fixed" with a couple of years of therapies. He'll be dealing with this for the rest of his life. I'll be forever worried about his social skills and whether he has friends and whether he's being bullied at school. I'll never be able to take school days for granted with him. The whole bitter-sweetness of sending him off the kindergarten has just turned into bitter, bitter and more bitter.

We have a pediatric center here at the University of Louisville that runs an austism clinic for the Systematic Treatment of Autism and Related disorders (STAR). I'm going to contact them this afternoon and see what kind of support we can get. The run some social skills groups, have therapy sessions, and overall try to integrate treatments. I'm hopeful that they can help us along.

I'm not really any further along with finding a school for Ryan. Well, I guess I am, in that I now know what ones WON'T take him. Right now his school is saying that at the most, they will allow him to stay for half-days only (morning through lunch), and only guaranteed through conference time in late January. There is one school possibility that I'm working on, they need to see if they can fit his needs into their current class. It's an inclusive school, with 20-30% special needs, and they have openings in both their half-day K and their full-day K/1 classes. It's a small private school that focuses on hands-on learning and their class sizes are only 12-14, with two teachers. It would only take him through 2nd grade, but it might give him the time he needs to mature and then possibly transition back into our parish school. The other option is keeping at home until there is an opening at our home public school.

I met with his school last week and man, I wish I was stronger. I was in tears two or three times during the meeting and I just hate that. Part of my frustrating with this school issue is that I can't see what is happening...I don't know what preceeds his problems, I don't know what things might trigger them, or what typical personal space is for a 6-yr old that he's not getting. I'm frustrated because I don't know exactly what kind of school environment he needs, so how will I know when I find it?? I think one of the worst things I could do is bounce him around various schools, trying for the right fit. Not something a child lacking social skills should have to deal with. Fortunately he *is* very social, likes other kids and isn't shy at all. He makes friends everywhere he goes (just doesn't always keep them!!). No one seems to be able to help with this school thing either...no one has any answers. Ugh.

That's it for now.

Tuesday, December 4, 2007

I couldn't sleep most of the night. I couldn't shut my mind off. So many questions, too much information.

Am I up to the task of doing what's best for Ryan? I don't even know what's best for him....so how can I do it? I try to research it, and at times nothing seems relevant to my situation with Ryan. I've had the same problem with researching SPD. What I find are forums and articles about kids who are deep into these disorders, whose lives are greatly affected by them, hour by hour, moment by moment. We are just not in that situation (praise God). He's so borderline on everything...Asperger's is borderline (actually AS or just some quirky behavior...who's to know?), his SPD is borderline (hits a bunch of the delays and behaviors, but nothing that holds him back all that much).

I joined an SPD forum only to discover it's primary focus is "recovery"....they believe a lot of SPD is caused by yeast overgrowth in the gut, heavy metal poisoning, food allergies and sensitivities. All fine and good, but the recovery process is highly detailed, time consuming, expensive and difficult. I can see it being an option for an SPD child who can't stand to be touched or has to have the lights at dim levels all the time or absolutely cannot function in a noisy environment. Ryan is not that severe by any means. Many of the kids on the group who have gone through the recovery process were brought up no higher than the level Ryan is now, if that makes sense. I'm just not sure that process is relevant to our situation. I mean, we might see a little bit of improvement, but would it be enough to justify the expense (both monetary and life quality/convenience)?

I'm having the same situation with researching Asperger's. So much of it is geared towards much more severe situations. Trying to weed through all of the information is so frustrating.

I have to make a decision on whether to let StMM know about Ryan's diagnosis or not. The psychologist said it was totally up to us, she'd rewrite the report to gloss over that part if we wanted. There are pros and cons to it, especially in a situation like Ryan's, which is so borderline. When I say borderline, I'm saying that it's mild enough that he won't qualify for services through the public schools. Same with his SPD. Anyway, until I find a good school fit for Ryan, I'm thinking I need to leave him where he is. He loves it there, he has friends there, he's happy, doing very well academically. I don't want to move him until I'm sure we've found a place that will do well by him. I'm afraid if I give his current school the diagnosis they will decide they can't deal with it just because it now has the name "Asperger's", and not give me the time I need to find the right placement.

That sounds kind of bad, doesn't it? That a school would let the term Asperger's scare them away from a child? I thought so too. Until I realized I am doing the same thing. I get the diagnosis and I'm immediately terrified and angry and frustrated. I wonder how am I going to handle this? How is he going to deal with it himself? And then I realize....this is my child. The same child I've loved and handled for 6 years. He's no different today than he was yesterday, just because he now has a label. It's not as if he just suddenly "caught" it, like the flu. My biggest struggle right now is to make sure I don't use this to define him...and that no one else does, either. But does that mean keeping the diagnosis under wraps?

I don't know.

Monday, December 3, 2007

It's official.

My son has Asperger's Disorder.

Relief. Heartbroken. Lightbulbs. Aha. Finally.

His psycho-educational assessments came back. The psychologist called him "twice-exceptional", because he's not typical either cognitively or psychologically. His pycho-educational profile is pretty complex, he falls either in the very above average or higher range, or the below average range. Much of his cognitive ranking was in the 95+ %ile, with the exception of Processing speed, which was only in the 9th %ile. That can be explained a bit by his lagging fine motor skills, but not totally. His cognitive profile puts him definitively in the gifted range. His psych profile puts him in the clinical or "at-risk" range for aggression, hyperactivity and impulsiveness; and borderline for social skills and adaptability. He's in the normal range on the ADD/ADHD assessments (so, he's not ADD/ADHD).

I should add that the particular variations in his cognitive testing, as well as the scores on his psychological testing are consistent with Asperger's Disorder. However, she said that his is so borderline, it's not something that will hold him back. It just gives us insight into the "why" of his behavior, and along with the sensory issues, it gives us a bit of a road map toward helping him be the best Ryan he can be.

This pretty much puts us back at square one with the school system though. Most private schools deal with the typical child, and can handle deviations in one form or another, but not to the extent Ryan needs. I thought we were going to look for a school based on his behavioral needs as priority. Now what we need is a school based on his cognitive needs as priority. Most places that can deal with truly gifted children are also familiar with the quirks that come along with them.

I'm amazed that I gave birth to this child. I'm thrilled that we have finally figured out what he needs. He's brilliant. He's charming. He's full of smiles and humor. He's frustrating. He's anger-inducing. He's my child.

My son has Asperger's Disorder. We all have a lot to learn.

Sunday, November 11, 2007

...and the other shoe drops

After a not-so-good week, we get to OT on Friday afternoon only to find out that it would be our final session there. They are closing the practice as of Friday. Humana has apparently screwed them over with claim payments (or non-payments), and they were nearly $50K in debt as of Friday and no end in sight. I guess 80% of their clients are Humana members. Not us, thankfully, but that makes no difference, they have to close to end the "bleeding". All of the other ped OT practices have waiting lists...which suddenly got much longer on Friday. Our OT is not even sure where she will be working. So there goes any more progress as it will be at least 6-8 weeks before we can get in anywhere else, and that means not until after our deadline of Christmas break.

Wednesday, November 7, 2007

Ryan had green cards all week last week. I was psyched! I thought for sure the therapy was working. Or something was working. Fast forward to this week...it's only Wednesday and he's already had two red cards and two notices of concern (when he hurts someone). I don' t know what the deal is with him. It's all pretty much out of my control, and I have no more ideas or suggestions for them on how to deal with him. I talk to him every night about the situations at school, and we discuss ways to deal with them appropriately. But it's an anger management problem I think, and he just can't remember the things we discuss when he's in the midst of it. Today he kicked a kid in the stomach because the kid tried to take Ryan's ball from him. Ugh. I guess I should get ready to home-school him.

Thursday, November 1, 2007

A better update

I had a follow-up meeting with the resource director and R's teacher on Tuesday morning. We had several communications before that, and I was feeling better about things. The resource director seems to have a much better attitude than she did before. We have set up a 504 plan for Ryan, for accommodations to help him through his school day. I learned that Catholic schools are not *legally able* to plan and implement IEP's, because by law IEP's are funded by federal monies and the government will not allow those funds to go to any Catholic school student (maybe all private schools). And they don't have the private funds to pay for special education teachers/aides, so they just can't provide that. But they *will* provide reasonable accommodations in the classroom, as covered under ADA (which is I believe where the 504 comes from).

We are planning for several things.
1) we purchased a "disc-o-sit" cushion for R's chair at school; it gives him a little bit of movement which might allow him to sit a bit longer each time.
2) I'm sending a backpack with weights in it for R to use during hallway transition times, and for him to use when he gets a little antsy in the classroom. Heavy work helps SPD kiddos to settle themselves a bit.
3) they are allowing R a few more beats to respond to requests to allow him more time to process them and respond appropriately.
4) they are breaking R's day into morning/afternoon for behavior cards. He'll have a chance in the afternoon to get his green card back if he loses it in the morning.
5) R has been seated next to three good role models, which has helped his ability to focus.

He's already doing better! He's had all green cards this week, and not through any special means. I've been pulling him out for lunch to do the brushing protocol and give him some large motor exercises to get him ready for the afternoons...and we've also taken him off of all artificial colors...so I'm not sure *why* his behavior is better, I'm just glad it is! We'll be doing an artificial color "challenge" this weekend, to see if his behavior changes when he's eaten a lot of it. He had an all-morning psycho-educational evaluation this morning, so I'm anxious to see how that turns out.

Saturday, October 20, 2007

Now that the shock has subsided, I'm in full-out anger and fix-it mode. Yes, I'm angry. Mostly at the one resource director who seems to not be able to see beyond my mention of Asperger's...no matter that the mention was that he has not been diagnosed with it. I really think she is projecting her own experiences with ASD and SPD/SID onto Ryan and not giving him a fair chance. She even admitted to me later that day that she hadn't been intending to suggest another placement for him that day, but that it became more obvious to her during our "discussion" that it was what needed to be done. So it's pretty much a foregone conclusion in her mind right now. I sent an email to the principal yesterday, and this is what I said:
***********************
Dear Mr W.,

Thank you for taking the time to meet with me yesterday, along with Mrs B {resource director}, Mrs C {teacher} and Mrs M {asst principal}. I know that we all want what is best for my son Ryan.

I want to state how disappointed I am in the way the meeting went. I left the meeting feeling as if I had been blindsided. To my knowledge, this meeting was set up so that we could discuss the problems Ryan was having, to discuss his OT plan, and to figure out ways to help him. I was actually looking forward to the meeting so that I could get more information about his situation to take to the OT and the child psychologist in order to better plan his therapies. His behaviors at home are very different than at school, so there was really no way for me to tailor his therapies to his school needs until I know what those needs are. I had questions about his behaviors that I didn’t even get to ask, that I’d been waiting until this meeting to bring up so that I could do it in person. I didn’t get to ask them because within a very few minutes of the meeting starting, I had to defend an OT plan that hadn’t yet been advised of the extent of his school behaviors (which was a reason I requested the meeting in the first place…to get the information to give the OT), and then shortly after that when I raised the possibility of Asperger’s, the discussion quickly led to placing him elsewhere. I didn’t even know his behaviors were serious enough to get a Notice of Concern until I got 10 of them at once only week ago. Yes, I knew they were a problem, but not that they were serious enough that we’d be discussing another school at this point.

I talk to Ryan about each and every aggressive situation that he is called on at school. He’s generally pretty honest about these things. Some of them are within the realm of typical boy behaviors. For example, he got called on punching a boy in the stomach. When I talked to him about it, he told me this boy (his friend) told him to do it, and then dared him to do it. That doesn’t make the action right by any means, but is fairly typical 6-year-old boy behavior. One of the others happened when Ryan and a friend were playing “football quarterbacks” and they were tackling each other; it was mutual play and the other child unfortunately got hurt. Many of the other aggressive behaviors point directly to his sensory seeking issues and we have just begun the therapy for that. We’ve been told by his therapists that we should see definite results in several weeks (not perfect, but a definite improvement) with the deep pressure methods, giving him heavy work, and various other techniques geared at maturing his nervous system and helping him learn to cope.

I came away from the meeting feeling like I was being asked to remove Ryan from your school before we’d had a fair chance at addressing the problems. I didn’t even know the extent of the problems until yesterday’s meeting, and we didn’t even have a chance to really address them before the statement of placing him at another school was brought up…which means they didn’t really get addressed at all. I left feeling that it was a foregone conclusion in Mrs B’s mind that this is what needs to be done. But I will tell you, I am not giving up on this. I feel like Asperger’s was considered a definite conclusion and as such was used in defense of her “decision”; however, Ryan has not been diagnosed with it. Until we are able to figure out which behaviors will respond to OT, I don’t see how making the assumption that these behaviors are Asperger’s based and as such will take 2-3 years to work out, is in Ryan’s best interest. Please understand that I am not in denial here, I just want to get to the true root of the problems rather than relying on speculation.

Here are our plans for working on this situation now.

1) Occupational Therapy – I will discuss with the therapist the need to address the issues that directly involve school (social and learning) first and more intensely. I will schedule his sessions twice a week at minimum.
2) Observations – I will schedule school day observations with both his OT and his psychologist, so that they can see first-hand what the problems are.
3) Psychologist – he will receive a full psycho-educational (and psycho-social?) evaluation. I was under the impression that this had already been done, but apparently that was just preliminary. We will address any issues that arise from those evaluations.
4) At home we will pursue an elimination diet with Ryan to determine whether artificial additives, gluten, and/or dairy are contributing to his behavior in the classroom. We will also work intensively with him on techniques to curb his sensory seeking behavior.
5) We will look into alternative options for his schooling, in the event that the results from the above measures warrant an alternative placement.


We are at St M's for a reason. I truly believe we were led here, even though we currently live closer to three other good Catholic schools (L, H S, H T). We are not giving up on Ryan, and we are not giving up on having him at St M's to receive the Catholic education we desire for him. If in the end we need to place him someplace else, either temporarily or permanently, we will do so. But I do not feel that this being a foregone conclusion is helpful to any of us.

Thank you for your time.
********************************
Oh, one thing I forgot to mention, is that I called the resource director after the meeting on Thursday and got her to allow us until Winter Break to make some progress. She doesn't think it's going to help, but she'll "allow it".

Yesterday we also had another session with the OT. I told her what was going on, and asked her if we could work intensely to make this happen...and she said "Heck yeah!". She's confident that with some of the therapies we can lessen his sensory seeking behaviors and improve some of his weaknesses to make things easier for him. We are going to increase his sessions from once a week to twice a week (once during school hours). We are implementing the Wilbarger Deep Pressure and Proprioceptual Protocol, and Brain Gym exercises. He will be getting a Disc-0 Seat for his chair and for sitting on the floor, to allow him some movement. I'm requesting that for 2 or 3 weeks, they allow me to pick him up for the hour that they have lunch/recess/restroom/rest time and do some deep pressure and heavy work with him, and get him back to school ready for the afternoon. I don't know if they will allow that, but I'm hoping it's a modification they'll be eager to make. We picked up a mini-trampoline this morning, and I'm letting him have sole use of it for getting some sensory input. We're also going to buy the Rainy Day Indoor Playground (trapeze, swing, cuddle swing, chin-up bar) for the new house. Today we started an elimination diet...this week or two we are eliminating artificial colors and flavorings (which will hopefully be a pretty permanent elimination). In a couple of weeks we'll eliminate dairy/casein. And then we might attempt gluten. All of these things have anecdotal evidence towards causing some of the same behavior problems that Ryan has. So there we are. I feel better with a plan.

I spoke with my aunt for over an hour that night. She is the superintendent for a small school system in Indiana. Her opinion is that we need to get him into the public school system for services. But...his diagnosis at this point is not enough to get services for him...they are really relatively minor at this point. And I really do not like our public school system. They are massive...85+ elementary schools alone. They don't have a great reputation (although some individual schools are better than others). And at this point in the school year, I'd only be able to choose our local school rather than seeking out a magnet one or Montessori or something that might be a better "fit"...our local school is traditional just like the school Ryan is in right now, so how is that change going to be good? I'm resisting that route, but it is an option if need be. What I think we will do is home school him in conjunction with attending a local cottage school that meets twice a week. It would only be for a semester and then we could explore the public school options for 1st grade. His current school did give me some other options...but short of winning the lottery soon, we just don' t have $10K plus per year to send him to a private school. Even if we withdraw our tithing from our church (which is what pays for his school right now), it wouldn't help all that much. She pretty much told me that public school wasn't a good option; home schooling wasn't a good option; but here are some private schools that might be. Ugh.

That's where we are now, anyway. Having plans definitely helps.

Thursday, October 18, 2007

One of my worst fears, realized.

Ryan's school has asked us to place him someplace else. They don't think they are the right "fit" for him. The resource director spent a couple of hours observing him, and says that his sensory issues are pretty severe. He is not attending to the instruction more than 25% of the time. He has had 11 "notices of concern" since starting school...that would be 8 weeks ago. They are pretty sure he has Aspberger's in some form. And they don't recommend that he go to a public school, because the county schools just are not advanced enough in this area to do him any good. 2-3 years of intensive therapy is what is needed, along with a very low ratio classroom. So my choices are looking like $10K per year in private school that deals with learning and developmental disabilities, or home schooling him.

This may not seem like a big deal to anyone else, but I am heartbroken, angry, embarrassed, frustrated, and did I say heartbroken? We've worked so hard to get Ryan into this school. We *just* bought a house within walking distance, and the difference between that house and this one could pay for his entire elementary school in a private school. I'm not sure I'm going to find a school that will take him right now, especially mid-year.

I just feel...broken. I feel like I've failed him. I know I have.

Sunday, October 7, 2007

Ryan had *3* green cards last week! It was a short week due to parent-teacher-student conferences, so that was actually an all-green week!! He was very proud of himself, and he got to choose not one but TWO prizes...both Hotwheels cars, of course.

Poor guy has lots of changes coming up. We are going to move to a new house in about 6 weeks, and I'm hoping the better house layout will assist me in keeping closer tabs on him. He really needs the reinforcement from me as often as possible. He needs to feel what it's like to do "right"...practice it, if you will...for his brain to make that connection. He also has therapy starting at the end of the week. This will be a GOOD change, I think. And we'll be getting some strategies and exercises to work with him. The new house will have room for a mini-trampoline and maybe even a deep-pressure swing. He will also start a Martial Arts class near the end of the month (after soccer is over). It's at a child-oriented sports center, and I've heard great things about the instructors there. He's doing really well with soccer sometimes. He's got the gist of the game, and is actually pretty coordinated and doesn't hesitate to go after the ball. But he has a habit of pushing and shoving to get to it. Today he scored a goal, taking the ball from within a huddle or players *without using his hands on the others!!* and getting it into the goal. I was so proud of him, and made sure to tell him that I was proud that he made the goal, but I was even MORE proud that he did it without pushing and shoving. He was beaming!! He'll get there...:-)

I need to call and schedule a meeting with his teacher, resource director, school counselor, asst principal, psychologist, and occupational therapist. Yikes! Trying to get everyone in the same place at the same time will prove interesting. As if I don't have enough going on this week with the new house...

Monday, September 24, 2007

Occupational Therapy

The OT's report is done (although I don't have it yet), but she called and recommended that we begin once-a-week therapy sessions. That won't start until Friday October 12 though. She'll be sending me the report in the mail this week. I'm not sure whether to go ahead and schedule the meeting with his teacher and school counselor and resource director or wait until he starts therapy. I guess I'll see how helpful the report itself is.

Ryan got a bright green card again today!! His certificate said it was because he was a calm and quiet worker today. :-) Two chips, because his daddy is out of town and unable to play Wii with him.

Saturday, September 22, 2007

Gattiland!

Ryan got not only a GREEN card yesterday, he got a BRIGHT GREEN card! (Again, that means he did something especially nice/good/helpful, etc). We had told him that when he gets bright green cards, he can either have 2 poker chips or a poker chip and a weeknight session of Wii. He came out of the school building and immediately told me "MOM! I got a bright green card today! And I know what I want! I want a poker chip and Wii!!" So he got a poker chip, which gave him enough to go to Gattiland this weekend too.

Mrs C called me on Wednesday night because he had two really bad days this week. On Wednesday he was so defiant with his music teacher, and he ended up throwing a carpet square at another student, getting her in the eye. And then he hit her in the face later in the afternoon (the girl, not the teacher). So Mrs C and I decided that it was time to separate him as much as possible. I didn't want to do this too soon, as I didn't want to make him "stand out" to the rest of the class, but I guess he's doing that to himself. So she brought in a desk for him, where he sits right next to her. It's one of those desks that you put books in from the open-ended front, rather than a lift-top. So inside the desk he now has two stress-ball type things, that he can use when he feels the need and miraculously he is using them and not *mis* using them! She thinks it's making a difference in his ability to do his work without disrupting the others. He seems to be fine on the playground. He got the "bright green" yesterday because he was able to walk, in line with his classmates, all the way down to the cafeteria and back without bumping, pushing, etc. She said that she can really see that he's making an effort! She also told him that he could have the little car prize that he'd chosen as an incentive, if he got just 3 green cards this week...and he did! She had let him keep it in his pencil box the last 2 weeks, just so he'd know it was still there. He gets to choose another incentive on Monday. I am *thrilled* that she is working with him "where he is", rather than expecting him to behave as well as the other kids are able to right now. And that she is able to see his improvement and comment on it. His academic work continues to be top-rate....and his writing is really improving.

I am back on hopeful end of things!

Wednesday, September 19, 2007

I don't know where to go from here.

I am soooo frustrated. Ryan had another terrible behavior day at school today. I'm actually starting to think that pulling him out of school would be less stress for me. He had many, many warnings today about personal space and still couldn't keep his hands off of other kids. He spit on someone again. He tripped another child, he poked someone in the eye with a carpet square, he slapped someone in the face, and he was blatantly disobedient. When he got home from school, he got a small dab of soap in his mouth, and was told that it would happen every time I got a report from school of him spitting. If he's going to do something disgusting with his mouth, it's going to be "cleaned out". I am NOT a fan of doing these kinds of things, but this has GOT to stop. I made him sit down and write an apology note to one classmate, and he will write another one this evening. His teacher is going to call me tonight...I can't wait.

Short days = good days

Half-day of school yesterday, so Ryan managed to come home with a green card!! One poker chip away from Gattiland. It'd sure be nice not to have to cook tonight...

I saw some real maturity from Ryan a couple of times yesterday. (Backstory: while he was at school, I took Max and Lily to the grocery store, and picked up 3 helium balloon/lollipop give-aways as we walked out. I discussed with M&L why we had to keep the balloons inside, and that they could play on the screened porch with them or in the basement. I reminded them again once we were in the house. Three minutes later the phone rang, and during my 5 minute conversation they managed to take their balloons outside and of course L let go of hers and it promptly took off for heaven.) Ryan came home from Grandma's house and saw his balloon, but once he heard about Lily's, he told her right away that she could have his. !!! He just wanted to make sure he got to keep the lollipop! He told her again later on in the evening that the balloon was hers, he didn't need it. :-) For the record, Max also kept insisting that he share his balloon with her. What great brothers she has!!

Oh, and at soccer practice, while he still had a couple of problems, he DID show some maturity. One of the other boys playfully tackled him and dragged him to the ground, but instead of getting up and trying to do the same to the other kid, Ryan just laughingly got up, brushed himself off and went back to paying attention to the coach. Yay!! On the other hand, he did keep throwing the ball *at* people...at their backs, especially, from short range. The first time I let go because it was one of the dads who kept playing around with Ryan, the second time it was the sister of one of his teammates and I didn't see it happen (she came and told me...I apologized for him); and the third time it was one of his teammates and he hurt her hands. I made him sit out for 5 minutes during his favorite game, and told him if it happened again we were going to leave. Fortunately for him, it was only 10 minutes from the end of the session, so he was able to behave!

I was reminded yesterday and today of something the OT mentioned. Kids with some of Ryan's SPD's don't do a lot of creative imaginative play, and they are often TV watchers/video game players. I've always been aware of it with Ryan, but especially so during the last 6 months or so. Max and Lily are *ALWAYS* playing pretend...pretend bakery, pretend store, pretend birthday party, pretend whatever. Ryan will join in on occasion, but he rarely initiates it. He will play pretend NASCAR races, but that is about all. Also, Ryan would watch TV all day long if we allowed it, and/or play computer games, Leapster, and video games. Max and Lily could really take it or leave it. They do like to watch a couple of short shows, but there have been mornings that I've inadvertently left the TV on and they haven't watched it at all. They enjoy computer games once in awhile, but never ask for it more than once or twice a week. It's just interesting to notice the differences!

Monday, September 17, 2007

Call from school

Yikes, not only am I going to have that stomach-clenching feeling everytime I pick Ryan up from school, but now it's going to be every time the phone rings while he's at school. I just got a call from the assistant principal, who has Ryan in her office this morning. He slapped the girl next to him (hard enough to leave a mark) and he stuck his foot out and tripped someone. I just don't know what will get through to him. We are trying to reward good behavior. We even went so far as to let him know that if he manages to get "bright green" cards, he will get to play Wii with his dad that very night...which is his very favorite thing to do right now, but is restricted to an hour total on the weekend. Plus all green cards get a poker chip, and 8 chips gets a trip to Gattiland. He's only 2 chips away right now, so obviously the incentive of getting those last two chips is not having any affect on him. I guess it's back to the psychologist pretty quickly. My head hurts. And my heart hurts too.

Friday, September 14, 2007

My diagnosis

Finally finished reading The Out-of-Sync child. And here is what *I* think Ryan has issues with. We'll see how close it is to the final report!

Modulating auditory sensations - we cannot take him to movies due partly to the loudness (even with ear plugs); no fireworks; Max and Lily screaming/crying makes him crazy; even as a baby, I could never use the blender, mixer, vacuum or hairdryer with him being in hearing distance.

Modulating visual sensations - again, no movies on big screens; hides from bright light, especially sunlight.

Proprioceptive Sensory Seeking - (MAJOR) - deliberately bumping and crashing into things; was a "head-banger" as a toddler; bites his nails; loves to jump from furniture to the floor (will do it over and over again)

Grading of Movement (proprioception) - uses a lot of force when writing on paper; seems unable to tell how much force he uses in touching people.

Tactile Sensory Seeking - (MAJOR) - asks for back rubs; need to touch and feel everything in sight-has "gotta touch" items that other children understand are not to be touched; always takes shoes off; "dive" into food, often cramming mouth with food; drinking water has to be ice cold/chews on ice; shows "in your face" behaviors, getting very close to others and touching them, even if unwelcome; eats almost exclusively with his hands rather than utensils.

Gravitational Insecurity (vestibular) - at times fearful of heights/falling - won't go within 2-ft of the edge of 2nd floor railing that was substantial enough and solid enough that there was no room to fall through it; becomes anxious when feel leave the ground not of his doing; will not go upside down doing gymnastics tricks.

And then, I know the OT observed issues with motor planning; upper trunk/postural weakness; and bilateral coordination, but those are things I haven't personally noticed.

There was a paragraph in the book, that had I read it a year ago, I would have said YES! This is what it is!! Here it is:
"By the time Rob was two...He required constant attention. Time-outs didn't work because I couldn't contain him. He was defiant, disobedient, disrespectful, and demanding. He was always busy, always talking (great verbal skills!), strong-willed, contrary and easily frustrated."

That is/was Ryan to a "T". But to just read that, it sounds like a behavioral/strong-willed child problem, right? There was nothing there that to me, pointed to anything other than a challenging child and a parent (me) who wasn't dealing with it effectively. If, at age 2, someone had told me that Ryan had a neurological issue, I would have said "Yeah, right. He's neurologically fine, he just doesn't want to behave." Now, to be honest, he does have behavior issues that are likely beyond this sensory processing diagnosis, but until we have this under control we'll never know if the other behaviors will cease.

Now I'm off to read The Out-of-Sync Child Has Fun". And pick up more reading materials at the library. And pray for Ryan to get another green card today....I so hate that stomach-clenching feeling when I pick him up, and his wonderful teacher motions me over to talk. Will I ever get over that??

Thursday, September 13, 2007

Sparkle Card!!

Somehow, someway, Ryan managed to come home with a "bright green" card (some classes call them "sparkle cards") today!! That's a step ABOVE the normal good behavior green card. What it means is that Ryan did something special today and then managed to have good behavior the rest of the day. He told me that he helped his teacher sharpen pencils. I wonder if it was an old-fashioned pencil sharpener that he'd have to crank the handle...muscle work...?? He was SO proud of himself! He got a certificate too, and I may just have to frame it. :-)

I emailed the school counselor and the resource director about his diagnosis. They were both right on top of it, and both want me to schedule a meeting with them to discuss details and plans of action, and to find out what they could do to help Ryan. I don't have the full report from the OT yet, so I'll need to wait until I have it, but I felt really relieved at how quickly they responded to me and how willing they are to help. It sounds like the resource director knows her stuff too, she recommended some books for me (although I already have them...) and specific chapters to read in them.

All in all, a good day!

Wednesday, September 12, 2007

This week, part of Ryan's trouble in school is that he tries to be silly with the other kids. His pushing, punching, spitting (more like raspberries) is in an effort to make the other kid laugh or get their attention. I'm trying to help him find a more acceptable way to be silly, like making a funny face or snapping his fingers...anything that isn't touching another person (especially with spit...ewwww!) It hasn't caught on with him yet, but I'm hoping.

More of the sensory stuff as I'm recalling it: His therapist said that she thinks he doesn't realize how much force he puts into things. Like, he might actually think he's touching gently but it's actually hard enough to hurt. He presses into the paper so hard when he writes, also, which could be the same trait. Another one...he almost never uses utensils, unless it's something wet and slimy like yogurt or pudding. He eats everything else with his fingers until we remind him to use his fork or spoon, then he'll comply until he forgets and again uses his fingers. Then he always always wipes his hand on his shirt, even if we've tied a napkin around his neck! He just can't remember to use it. So every single day, no matter what (unless we've not had any slightly-messy-foods at all), his shirts are so dirty.

I'm starting to doubt that this is going to change his worst behaviors though. Some of the things he does I cannot see how they could be sensory related at all. Tonight, Ryan and Max were outside playing soccer when I called them in because we were heading out to dinner. Max came right away, but Ryan wanted to keep playing. He kept trying to get Max to go back out into the yard with him, pleading and cajoling, but Max told him no, he wanted to go to dinner. All of a sudden, as I was heading down the porch steps towards them, Ryan ran up and shoved Max in the back HARD, knocking him flat on his face, up against the chain-link fence. Max barely BARELY missed the fence post with his face; he could have had a tooth knocked out or broken his nose, as hard as he fell. Fortunately he ended up with just a scare and a couple of small scrapes on his elbow and forearm. I scooped him up so fast, comforting him audibly and leaving Ryan behind as we went into the house. Ryan *knew* he'd done a terrible thing, and he didn't even wait for me to tell him to go to his room....he walked by me with huge eyes and went there immediately (probably waiting for me to explode!!). He ended up not getting to go out to dinner with me and the twins, I left him home with Don because I told him I couldn't let him be near Max for awhile. Now he can't play outside with either of the twins until this weekend, unless I'm out with him. Otherwise, if M&L are outside, R has to stay inside with me. But back to my point...I can't see that this is sensory related, that was just anger/temper/hurtfulness. And he's done that very thing before with both M&L, pushed them hard from behind in an "I'll show YOU!" kind of way when he's angry, and we've dealt with it in various ways but it's obviously not sunk in. And it's the kind of thing that I'm very afraid he'll do at school, although he's only done it in great anger so it's probably not likely to happen in Kdg. But I do worry, and I'm already cringing when the phone rings when he's at school. I just don't know what to do for him. He doesn't seem to care that it's wrong, that he'll suffer consequences of any kind, that he is hurting someone, etc.

He's working one earning a trip to Gattiland, land of racing video games (it's kind of like Chuck-E-Cheese). One green card at school = one poker chip. Eight poker chips = trip to Gattiland. That means he can earn one every other week, with one "off" day each week. But at the rate he's going, we'll be having our Thanksgiving turkey-pizza there.

Monday, September 10, 2007

There is hope!

Ryan's OT evaluation was this morning. It was *very* eye-opening. His therapist kept up a running commentary as she had him doing certain tasks, letting me know what everything "meant". The verdict is that he definitely has sensory problems that are holding him back and causing the behavioral problems. He still has a couple of reflexes that should have been gone shortly after birth. He has trouble processing loud sounds and bright lights and background sensory stimulation. He has some bilateral coordination and motor planning delays. Most of these things aren't so delayed that they are obvious to untrained observers, but they can be frustrating enough to him that he acts out when he doesn't "get it". He has upper trunk weakness that makes it difficult for him to hold a pencil correctly...it's mostly correct, but he hyperextends his pointer finger and wraps his thumb around which apparently shows shoulder/chest weakness. And it will make it difficult for him to write for any length of time. We did confirm that he is pretty much unable to control the impulse to bump and push and pull people (and things!). Because of the sensory issue, his body seems to need that stimulation to calm itself down. It's a need for "heavy muscle work", and it can be helped out by giving him acceptable heavy motor work to do occasionally, as well as teaching him ways to cope with that feeling/impulse cognitively. So the plan for right now is to ask his teacher to find some heavy motor work that he can do at points during the day, whether it's carrying a stack of books down the hallway or pulling a boxful of toys across the room, and making sure that he's working some muscles during recess/outdoor playtime. If he gets that stimulation in these acceptable ways, then he's likely to be less apt to hit someone or be a human bowling ball when walking down the hallway. This isn't treating him "special", it's helping him to learn ways to help himself. His therapist is going to score all of the evaluation components and come up with a definite treatment plan, and in a couple of weeks we'll begin sessions with her once a week for awhile. The evaluation was 2 hours long, and she really worked his mind...it's mental work to try to coordinate motor skills...I could see him trying to process it all. He was very tired when I took him to school at 10:30, and I almost didn't take him in. He started crying in the car saying he was too tired and didn't have any energy...this from a kid who rarely cries except from temper...but I talked him in to going inside to see if they would let him have his snack. The office assistant was fabulous with him, getting him to sign in and letting him know that they would find a drink to go with his pretzels, if his class had already had snack time. He seemed really pale but he walked with her willingly as she took him on a "secret shortcut" to his room.

How am I feeling with all this? Very mixed emotions. I am feeling very hopeful, because these are things that we can really work on, they are tangible skills that we can check from time to time. And I'm glad that we're doing this in Kdg, where one big purpose of school is to learn social skills and how to work on learning. So he's not going to be "behind" or working extra hard to catch up. I'm also feeling a bit guilty that I didn't go this route before. It could have really changed the dynamic of our relationship if I hadn't worked so hard and gotten so frustrated trying to change his behavior. Yes, the behavior had/has to cease, but knowing that it is as much a physiological issue as it is a cognitive one has already changed the way I look at him...in just a couple of hours time! For awhile I was so sure he was just being defiant. I mean, he's so smart about so many things, why could he not understand simple social rules other than because he didn't want to? Oh, so wrong. I'm also overwhelmed. I have so much to think about and process with this myself, books to read, my own behaviors to change, getting the word out to the people that matter (husband, grandparents, teachers, psych). I just feel like my head is spinning. Which isn't surprising since his therapist asked me a few simple questions and she (and I) are pretty sure I have sensory processing issues too....but have learned to cope with them in my 39+ years. So I have my own enlightenment to deal with!

But mostly I'm hopeful. Very hopeful.

Tuesday, September 4, 2007

Hopeful, hopeless

I've felt both emotions today with Ryan.

He did get his green card today...but with an asterisk. Mrs C said she worked very hard with him today, because she wanted him to come home with a green card. And he still had some behaviors that on a normal day would pull a card. But I did have a nearly-40-minute conversation with her this evening. I have a clearer picture of how he is acting in class. I'm hopeful, because my biggest fear was put to rest. I was very afraid that he was unable to focus at all and that even as smart as he is, he'd start falling behind. But she told me this evening that he very much IS able to focus, that he understands the lessons, that he is listening to the stories and answering appropriately when asked questions, and responding appropriately in his work. His main problem seems to be personal space and the need to be touching, moving, swinging his arms and legs. And regulating his mood...once he gets to that place where he's negative or being silly or whatever, he's unable to bring himself back to center. He can and will remain there the rest of the day. That gives me hope that this truly is a sensory issue and that we might be able to get this worked out through OT and psychological/cognitive work.

Oh and the best news...:-) He was the only one in his class to get a perfect score on their baseline testing. Mrs C was way impressed! *I* know he's smart, but I love to hear it when other people notice it as well. Vain, I know!!

Then came soccer practice. He had a complete meltdown near the end of practice, during which he punched me, kicked me and slapped me, then tried to run away from me when I announced we would be leaving. He cannot seem to control himself when he gets this way, and it makes me CRAZY. I'm truly afraid he will do this at school, and he'll get himself suspended or even expelled for really hurting someone. I just feel like we haven't made any progress with that aspect and it makes me tired. I came home feeling defeated and like things were never going to change with him.

Monday is his evaluation.

Monday, September 3, 2007

Fingers crossed for tomorrow...

I'm keeping my fingers crossed that Ryan has a good day at school tomorrow. I'll consider any day that he doesn't get a red card as good!!

He has been in kindergarten for all of a week and a half. Their first three days were practice days, as far as behavior is concerned. The next full week he had two green cards (no problems), one yellow card (a couple of problems) and TWO red cards (too many problems). And his teacher really is pretty lenient. I've had a lot of comments about this from people who think it's pretty bad that a teacher is either using this system so early, or using it at all. But I honestly don't have a problem with it, I don' t think she mis-uses it like some teachers I've heard about. It has definitely let me know that Ryan is having difficulties with his behavior. That's really not a surprise at all, I just didn't expect it this early or to this extent. His first red card was because he deliberately pushed a child down on the floor so hard that he almost flipped over. And then he punched the same child in the stomach on the playground. Ryan said that the other child kept trying to hug him but I don't know if it was an affectionate hug or a wrestling-type-bear-hug. Either way it's not something she could just let go. His second red card was for several things, including constantly getting up out of his seat and literally running around the room and disturbing the other kids. She said they get several warnings each time before she pulls a card unless it's physical aggression.

The bottom line is that we are pretty sure Ryan has some mild sensory problems that are making him agitated and unable to sit still at school. It's different than ADD, although it may end up that he has ADD and not a form of SID. He has so many little sensory type problems. We can't take him to movies, because the combination of darkness, sound and close-quarters makes him terrified. Terrified, as in sobbing with his head on my lap, asking me over and over again if we can please PLEASE leave, too scared to get up and run out by himself (not that I would want him to). And this is soooo not the way he is with anything else. He always seems to need to push people, run into them as he passes by, reach out and touch (or shove or punch). When he gets upset it immediately turns into physical aggression, no matter the upset. Sunshine and water on his face make it hard for him to want to open his eyes. Often when he eats he stuffs his mouth full to the point of almost choking (although this has gotten lots better recently). Each of these things by itself is not really that abnormal, but all of them together in one child can be indicative of sensory disorder...definitely on the mild side though. So I researched and called a pediatric occupational therapy office and we'll have him evaluated in a week. Then we'll know for sure. If it is a sensory disorder, they will help us with physiological methods of helping "desensitize" him. And we're also seeing a wonderful child psychologist so that we can go at it from the cognitive angle as well.

I did ask Ryan how he felt about school this weekend, and he said he loves it! So he's not discouraged yet with the red cards. We've talked and talked about it this long weekend, and I'm hoping he'll have some strength to reel himself in a bit. We can hope anyway!