sammi, I would start with an evaluation for autism. She does seem to have some of the symptoms. Maybe your pediatrician can recommend someone to do an evaluation. I'm not sure about this "angry guy" approach. It honestly sounds like a bit of quackery to me. But that's just my gut instinct - - maybe someone else will have some input on that.

Sweeby, thanks for the feedback. I agree that there are likely many sub-sets to the autism diagnosis. My DS definitely has a major mood component to his issues, but other symptoms are very much in line with autism. Frankly, I'm not sure that having another diagnosis would help him get the services he needs, but I will look into it. Thanks for your help.

Seeking, how is Alex doing at home? Some of what you said about Alex being a super-fast reader and memorizing things reminds me, honestly, of myself. I will have to go google hyperlexia.

Sammi, certain things sound very similar to my dd. Most people would never realize that my dd was different. She saves her meltdowns and rages for when she is at home, without others around. She can be very physical and aggressive and she can also hurt herself. That usually happens when she doesn't perform up to her own standards or when she is coming down from a meltdown (she'll hit herself on the head, bang her head against a wall, scratch, dig, or bite herself, for instance).

She has always been clumsy and awkward and has had trouble with motor skills, though she does well in gymnastics, oddly enough. Your description of your dd's memorization, pre-reading and reading skills, rule following etc are just like my dd's. We started out naming dd's rages "The Angries," and for a while we had some success with personifying them and dragging them out of dd and using some kind of fun/funny method of disposing of them--beating them with a pillow, flushing them down the toilet, etc. However, as she has gotten older, The Angries have gotten more sophisticated and resistant to expulsion. There isn't much buildup anymore; it used to be that it was an incremental thing and we could see it coming, but now it builds up unseen or while she is at school. Now she comes out of class and BOOM, there is the rage before we reach the car. Other times she is very fearful and needs the reassurance of adult company to get past things that might not seem scary to others. These things include going onto the playground in the morning before school starts, using a public restroom, walking past a loud machine. She has sensory issues, as you can see--she was always very afraid of the vacuum, the flushing of the toilet, loud bangs etc.

She loves and needs routine although she can go with a new one if there is some preparation for it and good motivation.

She tends to focus very intensely on an area of interest and totally immerse herself in it. It used to be Disney princesses, then princesses in general, and is now Harry Potter. She can mimic any accent. She used to tune out everyone and everything else and sing and dance to her princess songs or act out the videos. She was not interested in social interaction with other kids as a little girl and would avoid it if she could and ignore the kids if she couldn't. Now she likes to play with other kids but is very naive and "young," which is only now beginning to be a problem. She is very puzzled at the fact that her friends are beginning to pull away from her. She wants to be like them and she tries but she works from scripts and mimicry rather than out of a natural response so she doesn't really feel it, if that makes sense. She is going through the motions of, say, High School Musical play or Hannah Montana so that she can be part of the group, but she simply isn't in that place yet (for which I'm glad, actually). As of now, she has lots of friends but we're seeing this gradual shifting away and lots of angst from Alex over what she calls her friends "acting like jerks and being bossy and mean."

She loves to help others and she really feels compassion and empathy, which are all things autistic kids aren't supposed to experience.

She is rigid with herself and others about following rules and doing what you're supposed to do. She sometimes misunderstands rules and it is hard to break her of doing things she has gotten into her head as rules. For instance, it took a long time to get her to pick up a book where she left off--she knew the rule was to start at the beginning and read from left to right until the end, so she'd start over every time. She also doesn't do well with exceptions, so if the teacher tells the kids to read every night, she doesn't realize that it's ok to take a night off now and then.

She has this cute little thing where she will tell you something exciting etc and rock back and forth, front foot to back foot on her toes in a little pattern, and flap her hands. She has always done the hand-flapping, rocking thing. She used to walk on her toes almost all the time and still does it when she's nervous. She still sucks her thumb. She will put her movies or cds in a certain order and watch/listen to them that way. If she is watching a sing-along video, if she misses a word she will start the song over until she gets it perfect.

Those are the main things I can think of about Alex. Many of her earlier behaviors have evolved as she has learned coping strategies and watched how others behave.

Paige, Alex is up and down at home. She has times when she has rages every day for a week without us having a clue as to what triggered it, and then suddenly it's gone and she does very well. It worries me, though, that she can fly into a rage over something really trivial and smack one of her sisters. She seems to have a dark look on her face very often--furrowed brow, scowling mouth, unhappy and upset. I honestly believe that much of what Alex has comes directly from me; I taught myself to read at age 3, read my dad's doctoral dissertation at age 5, and generally preferred my own company to interacting with others. I learned French and Japanese from families living next to us when I was a little kid (don't know it now!) and picked things up immediately. I had a memory like Alex. I have always had a lot of sensory issues myself, was a head-banger as a child, still rock to this day and in many ways am so much like Alex.

Here are some very helpful hyperlexia websites that include comparisons to autism/ASD/Asperger's etc (it is still undecided whether hyperlexia is a spectrum disorder, subgroup within another spectrum disorder, or separate category altogether):
Hyperlexia, A Teacher's Guide
Good Hyperlexia Overview>/a>
Hyperlexia in Older Children
Discussion of Hyperlexia and What Kind of Syndrome it May Be
Inclusion Strategies for the Hyperlexic in the Classroom
American Hyperlexia Association
Comparing Autism, Asperger's, Hyperlexia
This link is a great one, with easy-to-understand overviews of many different syndromes, primarily as seen by school personnel:
Neurobehavioral Disorders, Including Rage Syndrome, Anxiety, Autism, Mood Disorders, Obsessions, etc

"But, by this point, as a 5yo, she's clearly very intelligent. She's very observant, takes everything in, she's great at puzzles, letters, etc. In fact, seekingadvice's description is startlingly similar to dd. She taught herself letters before she was even speaking very well, her favorite letter was P starting at about age 2. She's a perfectionist and a rule follower, and is very distressed by younger sibs not following the rules. She's in a club that includes alot of memorizing and she's finished the book that's supposed to last the average K kid all school year, and she gets very upset if you try to help her while she's practicing memorizing the next thing."

This is similar to my son's development. He has a condition called Nonverbal Learning Disorder, which may or may not be on the autism spectrum, depending on which researcher you believe. I think of it as Asperger's Lite. Below is a link for more information.

Here is a link that might be useful: Nonverbal Learning Disorder

Piggybacking on awm's post (thanks, awm!), I wanted to include a link that she posted to me earlier on. It is SO close to my dd that I keep trying to squeeze her into this box. In this excerpt from the link below They may have difficulty with abstract concepts, and may not grasp a new idea until it is put into words. Because their brain takes longer to process nonverbal information, they require more time to complete tasks and may have trouble transitioning from one activity to the next, you can see why NVLD doesn't quite fit my dd. Where a NVLD kid needs things put into words and has trouble with things that are written or drawn, my dd is the opposite. She cannot process verbal instruction and has to be shown through writing, diagram, or demonstration.

Otherwise, that entire link could describe my daughter exactly.

Here is a link that might be useful: NVLD

Hi seeking,
Personally, I think these definitions of the various disorders are relatively rudimentary at present. As research accrues, the definitions will change over the years. For example, 2 definitions that have gone by the wayside in recent years: autism always entails retardation; people with Asperger's don't desire social contact. Now we know better!

Nobody fits these profiles perfectly. You don't have to have every symptom. My NLDer doesn't fit the classic profile in some key ways: he has excellent math skills; he grasps abstract concepts very well (he's a philosophy major); he "reads between the lines"; he has no trouble with maps & finding his way around; he was a chess champ (definitely a nonverbal skill). Like many others with LDs, he loves video games (no verbal skills required there!).

But he has enough of the other NLD characteristics so that an NLD diagnosis makes sense: unusual verbal ability at an early age, keen memory, inability to integrate with his peers, background confusion, poor executive funtioning, social anxiety, hypersensitivities, poor facial recognition, laborious handwriting, physical clumsiness, difficulty dealing with change, lack of future think, can't form mental images, lack of self-calming mechanism, doesn't pick up on or misinterprets social cues. And at age 24, he still has post-school meltdowns, in a way. Now it's just expressed in excessive crabbing instead of tears & wailing.

The rule following thing is interesting. These kids are slow to pick up on rapidly changing social situations AND are rigid in their thinking, so get very distressed when others don't follow standard behavioral procedures.

By the way, Sammi and AWM, welcome to this board. I post sometimes on the step parent board, but there are 2 trollish posters over there. The folks here are friendly and welcoming and understand because they've all been through a lot with their kids too.

awm, do you think it's possible for my dd to have nvld if it is verbal language that is the difficulty? My dd can do pretty well with written instruction and she always looks around to see how others are doing things (does well by example), but she blanks on verbal directions.

She has the same spatial difficulties as mentioned on the nvld sites, awkwardness, trouble reading social cues, and motor skill troubles. It's just the MAIN indicator, verbal vs nonverbal, that seems to be reversed.

Hi seeking,
It's possible. Directions of any kind are overwhelming to NLDers. It's the sequencing of tasks that trips them up (weak executive functioning). Doing 1 task is hard; doing multiple tasks in the correct order is difficult. Plus they can't create a coresponding mental image in their heads -- when it comes to doing things, most people picture the events in their minds to help understand them. Written instructions, simply laid out, are best. If the action isn't complicated, then yes, she can pick up on what the others are doing -- NLD isn't total disability, it's often just slower ability.

I seem to go around in circles when it comes to a diagnosis. I wish it were more absolute, like chicken pox or something :)

Alex is having some trouble with a friend at school. The friend is getting "bossy" (Alex's word) and impatient with Alex's lack of prowess in PE and recess games. This will be our first test with social difficulties, I think.

UPDATE 2/4/08

We had Alex's final testing done by a psychologist who specializes in autism. This, again, was done through the Regional Center. Her conclusion was pretty much in line with the MIND report. She doesn't feel that Alex is autistic or even on the spectrum. She recommended a child psychiatrist as well, since she feels it is likely a mood disorder. Alex had some pretty abrupt mood changes in the course of her testing. She also found some OCD, sensory integration problems, anxiety and possibly depression. She didn't actually witness or hear anything that sounded like depression, but it is often the cause of rage episodes so ought to be looked into.

Meanwhile, we have an appointment with an Occupational Therapist for an analysis that will include sensory integration. Luckily, this OT is a specialist in that area. We can continue sessions with her if it looks as though this will help Alex.

I am not sure what I think. I am not sure what we'll do if/when the recommendation is made for medication. I'm still so confused. I know we will likely lose our IEP, but we will be able to get a 504.

Alex has also been tested by the school, and though I haven't gotten the report back yet, I know what it will say. They aren't going to find anything. I've already heard from the speech person, who found nothing amiss. I told her I didn't expect that she would as that is an area of strength for Alex in the way they are testing her. It is the pragmatics that were in question, for which this person had no test.

Anyway, it boils down to the fact that we can't demonstrate that Alex is negatively impacted at school since there is no data to support this. There were some things last year that she had problems with, but this year she hasn't shut down, needed me to help her out onto the playground, etc. She tests very well and does very well in school. Socially, she is fine. She continues to have rage episodes and meltdowns at home, but as she's able to control it at school, it's felt that it is more likely caused by a mood disorder. If so, this is something she has had since babyhood.

I have delayed her next IEP until after we see the OT and the child psych.

I attended an IEP training workshop, which was invaluable, but now I do not think we'll be working with an IEP much longer. I'm still petrified about the predictions that have been made about Alex, most of which indicate that she will likely bomb out in school in the next few years (this latest psychologist disagreed, though). We've been told she will begin to suffer socially, but we've been told she'll do fine socially. I'm nervous about releasing her from special ed and then finding that she really needs it in a year and two but can't get back in.

Could someone please tell me again what the difference is between an IEP and a 504?

Seeking,
I've wondered often how things were going for you. It's gotta be frustrating for everyone in your family. My best wishes for you to get Alex the appropriate help she needs.

Just a couple of minor problems with DSGS lately. He brought his Game Boy to school which is not allowed by us or the school. A couple of days ago he threw a ball and hit a girl in gym class. His new instructor is kind of a drill instructor type, and DSGS doesn't like ANYONE, especially a man telling him what to do. He'll just have to get over it. He's lost his Game Boy and Wii (gifts from his other grandma) for at least the rest of the week. He might get bored, poor lad.

Sorry I can't help you with the IEP/504 question. Glad to see you posting again.

Hi Seeking - I also wondered what was up and hoped things were going well for you.

I don't know if this is something you're open to, but "Emotional Disturbance" is a valid IEP category -- Alex does not have to be on a 504 plan!

Everyone says that a 504 is NOT as good as an IEP, though I have to confess, I don't know the concrete specifics of exactly how and why, but it's worth finding out since your school seems SO DETERMINED to get Alex out of Special Ed.

From Wrightslaw:

Section 504 is a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications.

Unlike the Individuals with Disabilities Education Act (IDEA), Section 504 does not require the school to provide an individualized educational program (IEP) that is designed to meet the child's unique needs and provides the child with educational benefit. Under Section 504, fewer procedural safeguards are available to children with disabilities and their parents than under IDEA.

IEP versus 504:
http://www.wrightslaw.com/info/sec504.index.htm
http://addadhd.suite101.com/article.cfm/iep_versus_504

The second site (the ADHD site) recommends listing what you want the school to do for Alex, and seeing if they will agree to do it under a 504 plan. If she needs "accommodations" more than "services" -- it might be OK.

dirt_yfingernails, it sounds like things are going ok for you? Seems like you're experiencing typical teenage stuff. Isn't it nice when the troubles are "typical"? I'm sometimes unsure how to gauge that, though :) I appreciate that you've been thinking about us.

sweeby, thank you for the response on IEP vs 504. It would perhaps be fine for Alex to be on a 504 since she is in a regular classroom with no (well, few) services now and doing fine. She has someone come in once a week to chat with her (20 minutes) in a separate area off the classroom and she is enrolled in a "girl group." They work on strategies for getting along, dealing with anger etc. That actually starts in another week and a half so I don't know how it works yet. There is also a kind of lunch club that is open to anyone who wants to join in. The kids who go play with each other under the supervision of a counselor so it's sort of a safe environment for kids who are a little awkward. Only the first thing (weekly chat) is specific to Alex. It's the only service that has been provided under her IEP.

But what if she begins having major difficulties with her school work? What if she is doing so well now because of her amazing memory and runs into real problems when memorization alone doesn't work? Will it be too late for her to be academically impacted if she's already off an IEP? I will use the suggestion you provided above and see what accomodations could be given her under a 504. The problems with that, as I see it, are that (a) it's difficult to predict what she will need, (b) you can't base an IEP or a 504 (we've been told) on what might happen, and (c) I don't trust the district to be honest about what they will do for her down the road. Or rather, I don't trust that assurances we get now about what they will do later will be remembered and carried out.

I need to remember to get promises in writing, don't I?

Well, things were going pretty well, but this last week and a half have been trying. One thing after another. He pushed a girl down. Threw a ball at another girl and knocked her down. Refuses to do work on a daily basis in all classes now. Refuses to do his required reading at home. He is given paper coins daily (I think 25 cents worth)at school and at the end of the week, they can go "shopping" for little items if they have enough money or save up and buy a larger item. Yesterday, the teacher said DSGS is doing better, he ONLY lost 15 cents! I don't think that is better, personally. He has lost his games, TV privileges and stuff at home but he doesn't want to earn them back very badly. He goes on streaks like that occasionally, testing the limits and our patience. Ah well, this too shall pass.

DSGS is still "on strike" at school and with homework. Sure hope he gets over this phase soon. I feel so disappointed with his behavior.

Hello all! Just found the "conversations" forum today after posting on a few other forums for months. I thought I'd chime in here as a special education professional. My specialty is learning disabilities (reading disabilities in particular), not behavior, so my assistance may be limited, but I can answer a few of the basic special education questions (like the difference between an IEP and a 504 plan).

The main difference is funding. An IEP has funding attached to it, based on disability categories, hours served, and particular services required. A 504 plan has no funding attached. A 504 plan is simply a statement of what accommodations a school will provide to ensure that a child doesn't experience discrimination based on a disabling condition.

This does not mean that the child will receive services from a special educator in the general education classroom on a 504 plan. I have seen circumstances where a child on a 504 plan was allowed to join an intervention group that was set up for a few classmates who were on IEPs. If those other children had not been in those classrooms, though, the children on 504 plans would not have received the intervention.

It is also easier to qualify for a 504 plan than for an IEP because the criteria are less stringent. The other main difference, and one that may apply in seeking's case, is the "stay put" provision. If a child is on an IEP and the case is taken to due process, the school is required to continue to provide services until the mediation process is completed. There is no "stay put" provision for 504 plans, although, in my experience, they tend to end up in due process much less often.

Hope this helps....

Hi guys...I haven't been around much in the forums lately, and I've completely missed this thread, I only just found it.

seeking, sweeby and paigect: hello old friends and I'm so sorry I never knew you all were dealing with special needs children. I can't offer any advice but I would have sent virtual hugs long ago.

My best friend's little boy, Logan, has been diagnosed as "on the spectrum" from a very young age, and he's been getting OT and special attention for sometime now. He's making really great improvements and we're all hopeful. He's three years old now.

I'm going to send her a link to this thread. She may or may not post, I don't know it's up to her. But I hope you all won't mind my inviting her if she wants to share.

I'm happy to "see" you all again, I just wish it was under easier circumstances. I'm thinking of all of you and your beautiful children and sending hopeful, happy, loving thoughts.

Ivette

UPDATE: GREAT news below!!!!!

I am so sorry, but I had reached such a low point that I just couldn't even face posting about it. Our third round of evaluations came back as not autistic. The reports from the speech person etc did not indicate a problem, and everyone we saw told us that they did not offer anything that could help Alex. It was recommended again that she see a child psychiatrist, an occupational therapist specializing in integrative therapy, and a counselor. It took forever to get all of this set up as our area is kind of isolated and does not offer much.

The OT was excellent but could not help us with therapy as Alex's motor skills problem, it turns out, has nothing to do with her actual motor skills but is part of her visual/spatial processing disorder. I don't know why that excludes her from OT, but it does. She also is suspected of having an auditory processing problem and we had to set up an evaluation with an audiologist, which needs to be done when the child is 8 as it has a developmental component. There is therapy for auditory processing, which is good. So, we have that ready to go (Alex turns 8 in June) but haven't done it yet. We also had a recommendation to take her to a developmental optometrist (?) in another city for her visual/spatial problems. I was beginning to wonder if this train ever stops. Another doctor, another evaluation, another possible diagnosis thrown into the mix, and no two people in agreement.

However, we have finally learned many valuable things about Alex and how to help her. The IQ test just isn't an accurate measure for a kid like Alex. Many of her problems appear to stem from processing disorders. Coping strategies and certain training therapies seem to be effective for her much of the time.

We have decided to wait for now on the psychiatrist. I did call the one that was recommended by the last evaluator, but she works for the county Behavioral Health Dept and isn't available right now. I took that as a sign to wait. Meanwhile, we found an outstanding child counselor who comes with many recommendations from friends of ours who are psychologists as well as from the autism evaluator and the REgional Center. I called her and she agreed, though her case load is full, to see Alex beginning in a month! Yahoo! I will see how that goes and then decide whether a psychiatrist is needed/advisable.

But here is the great news about school: we had our IEP, and the school psychologist COMPLETELY CHANGED HER TUNE!!! She had requested to do her own evaluation and we agreed. She says it is obvious Alex has "something," and the team discussed services and accomodations that they will be writing up for next year!!!! Meanwhile, we signed a temporary agreement that will allow Alex to get services for the remainder of the year!!! I can't believe it! We sat there with our jaws dropped to our chests, as we'd been braced for the declaration that Alex did not qualify for anything. Instead, we get to keep her on an IEP (they did make a small push to switch to a 504 but we declined and they didn't press further) and RECEIVE SERVICES!!!! We've not really gotten those for the past 2 years.

Honestly, I don't know what changed. We had 2 people at the IEP (that we didn't ask for) that have not been a part of the team before now, and I think the case manager may have interceded on our behalf to bring them there. They are both important special ed people. The case manager has been seeing Alex once a week as a sort of resource person, someone Alex can talk to and "let down" with. She has therefore gotten a better view of what's going on.

Thanks so much, holligator, for your explanation about 504 vs IEP!! Big apologies for not responding to you sooner. I did read and use the information, but I simply couldn't face posting earlier when I felt like we were headed nowhere.

Ivette!!! So great to see you!!!! I'm so glad you posted. I hope your friend visits. Usually there is more action on this post, but since I abandoned it for a while I think things really slowed down.

I'll tell you some more news in a while, but right now, duty calls (in the form of 2 5-year-olds)!

That IS great news Seeking! Just the acknowledgement that she has "something" is a win. Because yes, there is "something". What to call it? Who knows?! And that IS frustrating... Your "wonder if the train ever stops" sentiment is right on target. But you CAN treat much of it, whatever "it" is, even without having a name for it, and that's just what you have to do. Eventually, "it" will either reveal itself more clearly, or be remediated into submission. (We're in a similar position with our 12 y.o. son, but 'lucky' in the sense that the school calls it "autism". I think, and many of his Dr's and therapists have agreed, that it's something else -- just haven't named it yet.)

Well - Congratulations on the good IEP results. That's major!

And on the Developmental Optometrist -- There were some threads here on Vision Therapy that you should search for, because that's what this is all about. The therapy is a bit controversial in some circles, but was VERY beneficial for my older son (dyslexic), and moderately beneficial for my younger son, whose issues were much more severe. If you think Alex has significant visual/spatial issues, it could make a HUGE difference in many areas of her life.

Thanks, sweeby! I do remember the threads about Vision Therapy and was wondering if that is what the Dev. Opt. was for. I did remember it was controversial and I hadn't been able to decide when reading the threads whether or not I believed it would work--funny now to be looking at it as a potential for *my* daughter, lol. It does give one a different perspective. If there is something that might help her visual/spatial issues (which are significant), then I'm sure willing to give it a try. I hope it's covered, though, because all of these things are adding up in a big way $$$$$.

I forgot to mention, though I think I posted about it earlier, that Alex has very significant sensory integration issues. In fact, much of the behavior that was earlier used as an indicator of autism in her appears now to be SI instead. At least, this is what the OT told us. Things like the chewing, hand flapping, toe walking, pattern-walking etc are typical self-stimming behaviors that are used by children/people with other disabilities besides autism, for the same reason I think. It stimulates their bodies to release chemicals that soothe (seratonin?). The OT recommended that we do certain exercises, massage moves, and give Alex the chance to use the muscles that affect those proprioceptive thingies. Things like gymnastics are great, because it stretches the vital areas but isn't as dependent on visual/spatial cues as other sports (at least at Alex's level!). The OT told us to give her some things to play with, squeeze, chew on as soon as she gets out of the classroom and to give her something she has to suck through a straw that is hard to move, like a Slurpee, milkshake, etc. We got a giant box of GoGurts from Costco, put them in the freezer and I bring one every day when I pick her up.

All of that is helpful in "normal" mode, but we're in a rough patch right now behaviorally and not much gets past the meltdowns at the moment.

Oh, I forgot to tell you guys something funny! You would think that a kid with serious anxiety trouble would prefer to remain somewhat in the background, but not Alex! She loves to be a "star" and when she found out that her school was having its annual talent show, she begged me to sign her up! Isn't that something? So I did, and she chose her talent (singing) and her song. She had to audition for it and was one of only a couple of second graders who tried out. She loves the movie "Polyanna," and she chose the song that Hayley Mills sings at the town festival in the movie. She got picked! On talent show day, she performed on stage in front of the whole school during the day, and again for the parents that night. She was the finale of the show and I was so proud!!

If you'd like to see her sing her song, here is a link!

Here is a link that might be useful: Alex sings in talent show

Absolutely precious, seeking! Your costuming skills are on show as well. Thank you for sharing!

Alex truly is precious! I'm so glad the 504/IEP info helped.

About the vision therapy (and other controversial therapies), my view differs somewhat from many of my colleagues. First, let me say that there are many, many rip-off artists out there providing "therapies" that are complete bunk, preying on the desperation of parents like you. Plus, vision therapy has absolutely no empirical research base to support its use. That said, as a researcher who studies interventions for students with learning disabilities, I can admit that we don't have all the answers yet, and we probably never will. Sometimes, a treatment that absolutely should work doesn't, and another that has no reasonable explanation for working works. Kids are too different, and the number of issues they present is far greater than the number of labels we have.

So, as long as you go into any search for answers with your eyes wide open and on the lookout for the crooks and crackpots, you should be fine. I truly believe that any treatment that has a loyal following of parents who swear by it probably does actually work for some kids. Just because we haven't adequately defined the population for which it is effective so that we can conduct controlled studies doesn't automatically mean that the treatment is garbage.

I forgot to say that most competent OTs can work on visual-spatial processing and sensory issues. I wonder why yours said these issues didn't apply??

seeking, I just found this thread and wanted to ask what the OT is working on with you for the sensory issues? Jesse has sensory issues as well and it's amazing what they "do" to him when he's overwhelmed. Normally they're mild, and hadn't been a big concern for us until our two month hospital stay. He was so stressed in the hospital and so pushed in the sensory area (his issues revolve around food and social circumstances mainly) that he started the hand flapping and then worse...started banging his head against the wall to calm himself down.

I spoke with a great Sensory OT out of Denver (she's written many books on the subject) about Jesse and she said that these kids have to find their release somehow. For Jesse it's the ugly head banging, and we couldn't let that go on. We got him into specific therapy for the sensory issues right away when we got home and that stopped. For other kids, their mood can be effected significantly...making them "crazy" angry, mean, etc., as a way to sort of let out the overload. The therapist will help evaluate this if they do a full SID test on her. I'd try to get one done. It might make a world of differnce for the little darling :)

Jesse no longer head bangs and we are careful to work with him on his issues. We go to weekly therapy specifically for the sensory issues so that when he's in school...hopefully our work will have paid off and he'll find other ways to deal with his stresses.

SID is a vast and bewildering issue. What is a problem for my son, might be fine for your daughter. Some of these kids have such issues that just dressing them is a nightmare...socks hurt, shoes squeeze, etc. Their little world is so difficult and they can't express it to you because they can't understand you don't see it that way.

Anyhoo, I just thought I'd share the testing idea...it might matter more than it seems. And definately see an OT who is a specialist in Sensory Processing Disorders verses just a regular old OT.

Oh wow - DSI also. Boy Igloo - You're on the crazy train with your little guy...

My John had major sensory issues, but fortunately for us, there were of the hypo-sensitive variety rather than the hyper variety. He didn't mind poopy diapers, skunk smell, tobasco sauce, getting shots, extreme heat, cold? little cuts & burns? -- You name it, he didn't really care...

I'd strongly second the recommendation for an OT who specializes in sensory issues. It really can make a big difference --

Any news on a diagnosis Igloo? Or on how long it might take to get one if they think they're still on the right track? I know how frustrating the endless indefinite wait can be...

Hmmmm...I was under the impression, based on the information given by the OT we went to, that she specialized in SID. However, that may be more self-proclaimed than actual. She gave me some little brochures but basically said that she did not offer therapy for someone like Alex. I thought that was her specialty (SID) but who knows. My dh did not really care for her that much though we both thought that her explanations as to what is probably going on with Alex were very valid and her suggestions have been helpful for the lesser problems.

igloo, I'm sorry to hear about your son's sensory issues. It seems that these children rarely have just one difficulty, doesn't it? I think your suggestion is excellent about finding an OT who specializes in sensory issues (besides the one we already saw). I wonder if Alex's anger is her SID release? Whatever it is, we need something more powerful to combat it than the little helpful suggestions from the OT. It has always seemed a no-brainer to us that we need to redirect her anger into other channels, but how to do that is the question we've not had any luck in answering yet. I truly do think that sensory OT intervention would work well for her. Do you have any idea how to locate a good sensory OT?

Also, do the following things sound like sensory issues?
*Alex often complains of feeling itchy. She says there are ants crawling on her.
*She sometimes complains that there is a strange taste/texture in her mouth. She tries to spit it out, wash it away, or mask it with something to eat

Sweeby, how are things going for John? Is he adjusting well to the math?

dirt_yfingernails, how is your DGS doing? I am sorry I didn't post to you earlier. I do hope that overall things continue to improve for him and you.

This is our worst time of year for Alex's problems. There is so much going on both at school and in her activities; we're nearing the end of the school year and thus the routine is going to drastically change and so will her teacher & classmates; she is the lead in her class musical; etc etc. We are seeing some really awful meltdowns, tantrums, and behavior right now.

Which brings me to my final question: for those of you who have dealt with rage/anger episodes, how did you cope with siblings? My 5-year-olds now mimic some of the behaviors and I'm not sure how to handle it.

Seeking -- On the itchy feeling and strange taste in the mouth -- sorry, but those sound more medical to me. DSI (SID is also Sudden Infant Death, so the sensory folks are switching to DSI) would be more like "My hair hurts" or "This shirt is too scratchy." Or the rage meltdowns she is having. Does she have a neurologist? Or how diligent is her pediatrician about the little things? Not to be alarmist, but I'd follow up on those others.

On the math, John is actually doing really well. Don't know if you saw that his school is now (post-test) giving him more appropriate material, and John is THRILLED with it! He's completing his assignments independently (a first, sadly) and is so proud of himself.

Wish I had some advice for the siblings issue. John's brother is 5 years older, so he can very reasonably be held to a higher standard. He's also very aware of his brother's difficulties and very understanding.

By the way, Alex's performance was fabulous! She looked and sounded fantastic! (Who would know she had issues?)

sweeby, I am so glad to hear that John is doing well with his math. I had read about the school giving him the "missing pieces" and had hoped that it was working out.

I have not had much success with my pediatrician as far as seeking answers for Alex's difficulties. I have repeatedly asked about having her see a neurologist, but no one seems to think that is advisable (except members of this forum). I even asked *my* neurologist but he was too busy to even let me complete my question. Should she have some sort of testing, as in MRI or CAT scan or EEG or anything?

We know that bipolar disorder is a possibility, but most of the specialists have told us that she doesn't seem to fit that, either. Too bad you can't just do a blood test to figure these things out, huh?!

Alex loved being in the talent show. We didn't have to do too much for the costume--she had a red skirt and navy tights. We did find some sparkly red shoes at WalMart and Grandma bought her a sequined jacket which fit right in. I made the crown from a Dollar Tree "Bride" tiara. I glued some red and blue jewels over the word Bride and glued on some red, white, and blue tinsel stuff (cut off of a Dollar Tree bouquet).

My mom thought I should write "My parents are liberals" in big letters on her bloomers so it would show when she took her bow at the end, *snicker*.

seeking, I just happened to drop by and I watched that video and WOW! Alex was 100% on pitch the whole time, even in the higher reaches! -- I could tell she knew what she was reaching for even when it exceeded her grasp, and when it got lower in the second verse, she nailed it completely. Really stunning pitch there for such a young person. At first I thought it was a lip-synch because her pitch was so dead-on.

I love what the bloomers message would have been :)

Thanks, Superfly (hee hee)! She does seem to be able to sing pretty well. She was very nervous and didn't hit it quite as well as at home, but at the evening performance she really did nail it. I only have that one poor-quality video from the day performance, but I like that all the kids cheered for her :) I would love to get her involved in a music program. I backed off on a lot of activities this past year (she used to be in a music program) because of her anxiety. I thought maybe fewer activities would help, but it actually appears that the opposite is true. She enjoys being busy and I think it takes her mind off other things.

BTW, Alex's little sisters were entranced with the whole talent show thing. The three girls immediately began to plan for a sisters act next year, LOL. The twins will be in kindergarten then. They told dh and me what their act was going to be and we could barely contain ourselves. They plan to sing "Lake of Fire." In case you are unfamiliar with it, it's off the Nirvana Unplugged CD and the opening words are, "Where do bad folks go when they die? They don't go to heaven where the angels fly. Go to a lake of fire and fry...see 'em again til the Fourth of July." Quite a departure from America the Beautiful :) Needless to say, we will quietly steer them in a different direction before next year's show.

Hi all, I just checked in for the first time in months. Things have been very trying here as well and I have thrown myself into my gardening as a coping mechanism, so I've been over in the gardening forums. Gardening is so much more straightforward than parenting. :-)

Ivette, good to see you as well! I hope you and your family are enjoying your beautiful "new" (what is it, 2 years now?) home.

Seeking, so glad to hear the school system is coming through for you. You seem to be sorting through this as well as anyone can. We've hit a rough patch here now that the teens are upon us. Behaviorally, DS is fine, but he has some serious depression and anxiety issues heightened by the typical early teen proclivity for drama. I am on constant alert and feel like I am having to maintain a therapeutic environment at home all the time, which is exhausting, as many of you know. He's such a good kid with a big heart, but so lacking in self confidence. It's really quite sad.

Anyway, I didn't intend my post to be a downer, which is why I've stopped posting! Just wanted to let you know I was thinking of you all. Take care!

Gosh, Paige, please don't stop posting because you're afraid of being a downer! It goes with the territory sometimes, or we probably wouldn't be posting about this stuff at all. I'm sorry to hear that things have been tough for you--I can sure relate to this I am on constant alert and feel like I am having to maintain a therapeutic environment at home all the time. Unfortunately, I do not appear to be very good at that, sigh. In spite of all my best intentions and resolutions not to, I often end up snapping and then I yell and threaten. Sometimes I just run out of oomph and I can't handle things any longer. I can imagine how it must hurt to see the pain your DS is going through.

The counselor called and she now had an opening for us! She wanted to meet with dh and me first, so we had our initial session yesterday. I liked her but I have this fear that it won't help and we'll be spending a lot of money for nothing. I know that's pessimistic and cynical but I can't help it--after all these years, this will be the first person to actually see Alex for therapy and I've gotten into the mindset that we're never going to get anywhere. It also isn't covered by our insurance, and $90/week plus childcare for little sisters (another $15) is a big chunk for us. How did you guys deal with the money issue? It seems most of these therapies and tests aren't covered, and we have excellent insurance. I'm not even sure how much we've spent this last year, but it's big.

Well, so far the counselor has not helped. We've been 3 times, the first with just dh and me and the last two with Alex and me. The counselor wants me present, but honestly I feel it might be better if Alex had the chance to speak without me around. Anyway, we've just gotten some suggestions that seem kind of weak ("imagine your anger is going into a balloon and it gets bigger and bigger and then you let it go"). I mean, those are great tools but somehow I was expecting more. The counselor asked yesterday if I wanted to continue, which surprised me because I've not indicated any discontent but I think she realizes that there isn't much happening. During the sessions, Alex is squirmy but listens, answers, and appears fine. Then the minute we get out of the parking lot, she explodes. Maybe if she'd explode in front of someone, especially a counselor, it might help.

The counselor asks me questions during the session that kind of put me on the spot because I'm not sure what she's trying to get. For instance, she asks things like, "Is Alex good at abstract thinking?" and I don't quite know how to answer. "Does she have a good imagination?" is another. There's no yes or no answer to those questions but obviously it's a lead-in for something she wants Alex to think about, say, or do. The counselor, at this third session yesterday, said that she thinks this is not psychological but neurological/physiological in nature. I am sure of that, but what to do? She began mentioning tools that Alex could use like the balloon and building an anger box by poking a paper towel tube down into a shoe box and putting crumpled paper inside. Alex is supposed to blow her angries into the box and the paper will absorb them. I had just finished telling her that we've had a number of imagery exercises in our arsenal but that they were no longer very effective with Alex (I think she's sort of outgrowing that kind of thing). I was disappointed that the best we've gotten so far is suggestions for what she can do after the fact (which is, as I've told the counselor repeatedly, almost futile) rather than ways to prevent the build-up in the first place. I had hoped we'd be working with the school psychologist on mitigating the anxiety and consequent anger while it is building. That was the plan, outlined at her IEP.

I can't see spending $100/week for stuff we've been doing better ourselves. I'm very disappointed in this as it looks to me like we will need to look in another direction for assistance and we waited so long to get this counselor. The suggestions from the OT were much more helpful and she only charges $60/hr, LOL.

Question: can we get assistance with any of this (financially) since we have an IEP? It's getting pretty brutal, trying to pay for all of this assessment, counseling, etc.

I guess we've been 'lucky' (odd use of the word) that our son acts out in school more than at home! So the school has brought in counselors to work with him there on their dime, and it's been very effective. (At home, we don't have the types of situations that have triggered the behaviors, so we don't really have the same issues - though we do talk to DS about his behavior at school.)

Anyway -- Alex clearly has a pretty decent capacity to hold herself together until it is 'safe' to let go, so she's letting go at home after school and in the parking lot after counseling. And your counselor and schools are seeing the same things we see at home withour son -- nothing. Which leaves them in a pretty weak position to help -- even if they believe you 100%, which sadly, they may not...

I hate to be a downer about this, but IMO, until the school sees Alex having meltdowns at school, they are far more likely to blame any 'behavior problems' she has at home on 'poor parenting' or an 'inappropriate home environment' or perhaps 'insufficient structure and supervison' at home -- anything else that isn't their fault. And while I'm confident that isn't the case, it's a hard case to prove to a school that doesn't want to believe it and has every incentive to simply say "not my problem..."

I know it's not completely honest, but what about buying a pocket digital recorder - they're tiny and cheap - and taping some of Alex's meltdowns to share with her counselor. Even though this counselor hasn't been very effective yet, she hasn't had much to go on, and it's possible that she may learn something from the tape that she's not been able to see before? Also, you said she said it seemed "neurological rather than psychological" -- true. But does that mean she isn't the right person to help? I'd ask her that.

You mentioned also that you thought it might be better if you weren't in the room with Alex. Why do you think that? Do you think Alex is maybe 'hiding her flaws' from you? And that she would open up if you weren't there? How capable is Alex of verbalizing her feelings? And how willing?

Hi all, just checking in quickly. Seeking, I have to say that counseling just really didn't work to change DS's behaviors when he was young. Now that he is older, we are in cognitive behavioral therapy, and that is SLOOOOWLY working. DS's psychiatrist told me that he thinks most counseling is ineffective in kinds under 10, unless it is to address a traumatic event. (I know, I know, our kids have traumatic events every day, but I'm talking about a death in the family or abuse or something like that.) Young kids just have a hard time with behavioral therapy, and it is up to us as parents to try to create as therapeutic an environment as possible to get them through these years. This is not an easy thing, I know.

I will say that as DS has gotten older, his behaviors have improved insofar as he does not lash out the way he used to. He is more aware that he can't act in a violent manner without serious consequences due to his age and size. Now his behaviors are more internal - - things he does to himself, like not eating or picking at himself.

If Alex gets to the point where her temper is likely to cause her to hurt herself or others, which I know is beyond her control at this point, I think the thing to do is to talk to a psychiatrist about medications that address these outbursts. I know this is controversial, but basically, if there is nothing else you can do to control it, the choice is to live with it or medicate it. Living with it presents a whole list of problems, including the impact on siblings (I grew up with an unmedicated brother who had challenges that caused him to be violent and it scarred me for life), the impact on Alex (feelings of guilt and inadequacy because of her behavior that will become internalized and impact her self esteem) and the impact on you. The downside to medication is that we can't be 100% sure what the long term effects are. Also, there can be a trial and error period of figuring out what works.

Honestly, I wish there was a way to decide how to proceed in these situations. I don't believe people who are judgmental about these things have any idea the struggles we go through. There is no control group in these situations, so it is impossible to tell what might have happened if we had taken a different route. My approach, after much consideration, has been to do what needs to be done to make everyday life better now, in hopes that if life is better now DS can build upon that and prepare for his future, rather than facing tremendous stress and struggle on a daily basis.

OK, sorry if that is a bit rant-like, I'm in a hurry and I'm also feeling a bit melancholy about all of this right now!

In other, more positive news, I started dating this year, for the first time since DS was a baby. I'm in this place now where I realize that I cannot give up my entire life and any prospect of happiness to be a martyr to my child. He is going to have to figure out how to make it out there in the world eventually, and I need to have more positivity in my life in the meantime. It's not easy to find someone I find interesting and who can live with my situation, but at least I'm out there, right? I have a first date tonight with a guy from work (same building, different department) who I've been having lunch with regularly - - we're going to see a band I really like. Wish me luck!

Off to get ready for work now - - will try to check in soon.

Paige, I agree that medication is so often the only option, but even that is full of difficulties, trying to find the RIGHT medication is so difficult. You try one and it works (for about 3 weeks), so you try another and it has no effect, you try the next one and it not only doesn't help, but it makes things worse.. it's a horrible roller coaster!

My little guy, Stevie, is 11 and has severe autism, he is completely non-verbal and has very bad self injurious behaviors. When he gets upset, he bites himself and pulls chunks of skin off his hands and arms. For the last year we've been struggling to find anything that works to help him without much success. Right now, he wears full time huge padded hand/arm covers that I made myself because I can't find any protective ready made equipment for him.

I wish they had a nice little chart of behavioral issues that said "your child has x behavior, give y medicine and all will be well"... a mom can dream, right? ;)

~~Veronica

PS good luck on your date, I can't imagine doing this on my own, you are a strong woman!

paige, thanks SO much for giving me the perspective on counseling. Alex has been to see the counselor 6 times or so now, and frankly has gotten less out of it than from the lady who comes to see her at school. Now, I have to confess that it takes her several visits with anyone before she "opens up" with them, but I really don't think the counselor has anything to offer to aid with the meltdown issues. I was wrong earlier when I thought that it would take very little to help Alex. It takes very little to give her some venting and stress relief, but I see that we will probably be dealing with the meltdowns for a while. They are slowly evolving as she grows and matures. We've gotten a lot better help from the internet, intuition, other parents, and so on than from the counselor. I'm not saying she isn't a good counselor, but I don't think her type of specialty has much to offer a child like Alex. Perhaps a psychologist or someone trained to work with kids with special needs would be better. We thought we were getting someone like that since she came so highly recommended from the psych that tested Alex for autism and a couple of other trusted people we know. However, she has admitted to us that she isn't sure she is the person we need. Sigh.

BUT...WOW!!!! Dating! That's huge!!! I'm so happy for you. It really is a big step and a very important one, too. I think you are absolutely right; it is smart to make your own life as complete as possible and ultimately, I believe that this is best for your child as well.

Oh Veronica, you poor thing!! I feel guilty for my complaints when I think of what you're dealing with. I hope that there will be something to help you with Stevie's self injurious behavior! How very heart-breaking that must be. I know how sad I feel when Alex hits herself in the head or pinches herself and can't imagine how it must be in your shoes. Hugs!!

I'm sorry, sweeby, I thought I'd answered your post. Guess it was just in my head!

The school has actually come around quite a lot. The lady who has been seeing Alex once a week at school has developed a huge fondness for her and they now email and write, too. She told Alex to email her anytime she feels she needs her and she'll come. The school psychologist will be working with Alex next year (starting in August) and the plan was to coordinate something with the private counselor and the psych. However, the counselor doesn't seem to offer us much in the way of suggestions for that and I feel sort of...well, like I did with our remodel--I end up doing the groundwork that I'm paying others to do (others who are supposed to know how to do such things). Sure, I know Alex much better and am therefore in a position to see what might be effective and what might not. Still, I don't like the feeling that this is all uncharted territory and we have to feel our way blindly. I *know* there is much commonality that can be tapped.

Anyway, it was suggested by Alex's case manager (the one who comes to her class once a week) that I contact a certain person who is a psych himself, has much background with special needs kids and who is also the current head of special ed. She felt that he might be able to guide us on the counseling issue and she told me to discuss with him the financial side of it.

As far as why I would prefer that I not be in every counseling session, or at least for the whole thing, there are several reasons. First, I end up trying very hard not to be Alex's spokesperson. She looks at me, as does the counselor, for confirmation whenever she says something. She looks to me to explain things, though I try to make her do as much herself as she can. The counselor uses me to make points to Alex and I often don't understand what it is she's working me to say. It makes me uncomfortable. I feel that Alex needs someone she can completely open up with, and when I'm in the room, that just won't happen because she is so concerned with rules and what I will think and so on that I doubt she can be totally candid. What if she were having a problem with something I'd said or done? She'd never talk about that in front of me.

Finally, Alex simply does not appear able to verbalize what is really wrong. She can tell you what things bothered her that day but the bigger picture is not something she understands. She listens to the counselor and, later on in the session, carefully rephrases or repeats things the counselor has suggested. In other words, she constructs a script to fit what the counselor wants to hear out of the very things the counselor has mentioned, but in a clever way that makes it sound like her own ideas. Do you know what I mean? So it looks like she has a good grasp on her emotions but the reality is she still has no idea why she has so much rage at the end of the day. Now that I've written this down, I see that I don't really think that approach (examining the Why) is meaningful or productive at this point. What we really need to do is reduce the stressors that cause the build-up, but the counselor has not been helpful in that regard. That is why I think it would be better to work through the school.

OK, way off topic for this thread I know, but I thought I'd throw out an update since I told you I was going on a date! Also, it lightens the mood a bit. Thanks for the well wishes, btw.

We went to see a really great live band at a nightclub I haven't been to since my son was born. I had the BEST time listening to music I love and dancing until 2 am (the band played for 4 1/2 hours!). I'm not at all sure about long term prospects with this guy, but he is a lot of fun and very active/outdoorsy, which is how I used to be in my former life. :-) We had a great time, and I think I'm going to have a fun summer, if nothing else. And honestly, that is exactly what I need right now.

For a couple of months this past winter I dated a professor who has a child from his previous marriage who is with him 50% of the time. He is very serious and smart, and interesting in an intellectual kind of way, but honestly it felt like more work than fun being in that relationship and I've decided that what I really need right now is a bit of an escape from my everyday life, not someone else's everyday life compounding my own problems. Selfish and immature, perhaps, but that's where I am right now. Maybe it's a mid-life crisis!

Seeking, I honestly think that counseling for you might be more beneficial than counseling for Alex right now. Getting the help and support you need to keep your home environment the way Alex needs it to be is very important - - none of us are superheroes, and we need all the help we can get. Having someone experienced to bounce things off of when you are at a loss for what to do is invaluable.

Veronica, my heart goes out to you as well. Have you read "Girls of a Tender Age" by Mary-Ann Tirone Smith? It's actually a true story crime novel/memoir combined, but the author talks a lot about being raised with an autistic brother (whom she loved dearly). He also bit and chewed on his wrists, much like your Stevie. It's a sad story all around, but you might get something out of reading it.

Paige,

I'm glad you posted about your date, it sounds so fun! I know exactly what you mean about wanting a fun outlet. DH and I spent Saturday morning in a Harley store checking out motorcycles and I think we might actually buy one (although they didn't have the model we want, so we have to wait till end of July for the new model year to come out). We do live in Alaska, so it won't fulfill the "fun things to do" in winter, but for a summer of carefree "get us the !$#@ out of the house" I think it'll fit the bill nicely.

Seeking, did you ever get Alex evaluated by an OT specializing in sensory integration? I'm wondering if working with some weight or pressure might help. I know with Stevie the addition of weight and pressure makes a HUGE difference in his ability to cope. If her symptoms have some physical cause behind them, all the counseling in the world won't help.

Thanks for the book recommendation Paige, I'll look into that one for sure. My older kids are such a great help with Stevie and (mostly) love him very much, haha.

~~Veronica

roni, I did take Alex to an OT who specializes in sensory integration, but her response was puzzling. She had lots of great ideas, strategies, and explanations for what is happening to Alex, but she did not recommend seeing her for therapy because her motor skills were fine (?). I was so disappointed, because Alex loved going there and I think she had the most to offer us. She had lots of neat exercises and equipment for it as well as ideas for releasing stress. I need to go back and reread her report, as I can't exactly remember how she explained her reason of not taking Alex as a patient. She highly recommended having Alex tested for auditory processing, which we did today. Alex crashed after about an hour and a half, which the audiologist said was super for her age even though we have another half hour or so to finish up. She found some very interesting things, she said--areas of "brilliance" and areas of real struggle, things that affect her comprehension. Beginning next week, the audiologist, our counselor, and a child psychologist are going to be sharing a building (all their offices together with a shared reception area) and working as a team for situations like ours. When our counselor told us she was going to moving into the building, I hadn't realized what she meant!

We got to see the picture they took of Alex the first time she went in for audiology when she was only 3, which was fun.

We go back to finish up the testing on July 1, so we won't know any details until then.

Anyway, I am now thinking the OT may have told us to first get the auditory processing testing done as she very much felt there was an issue there. Maybe she could join our "team"! Her office is right next door! But I do remember her telling us she couldn't really do much for Alex since her eye/hand and coordination difficulties do not stem from a motor skills problem. I don't understand what that means. If you have problems, why does it matter whether they are the result of a processing disorder or a motor skills (physical as opposed to neurological?) problem. I would think an OT would deal with both, particularly one who specializes in sensory integration therapy.

I really appreciate what you wrote here: If her symptoms have some physical cause behind them, all the counseling in the world won't help. I think you're right on target! After today, though, I am hoping it might be a good component in a multi-faceted approach. Sheesh, that sounded hoity-toity! I mean, I like the idea of counseling much better when it's paired with the other specialties and the therapy is shared.

Paige, how wonderful to have a fun summer ahead!! I'm very glad for you. After my first marriage broke up, I had a very great fear of men and swore I would never let anyone get close. I didn't, and although I can't be too sad since I got my wonderful dh by waiting (15 years), I still spent all the years of my older children's upbringing alone. In retrospect, I don't think it was very healthy for them as neither seems to be able to form close relationships with the opposite sex. I'm afraid my suspicion and fear is a legacy I've left them, sigh. They are 26 and 28 now so I guess there is still plenty of time, since it took me half my life :)

Seeking,

A multi-disciplinary approach to Alex's care sounds spot on. Those of us with "complicated" kids can't just do the one specialty thing and get it all covered. Speaking of which, Stevie's pediatrician is sending us for a huge eval to Children's Hospital in Seattle. Hopefully we can get seen by a bunch of specialist as well as get a whole bunch of testing done all at once-she said we'll probably do an MRI and EEG as well as eye exam, hearing exam, bloodwork and urine test all in one session of general anesthesia. I'm hoping insurance will cover at least part of our air fare and that the Ronald McDonald house there has room for us.. they should, we'll have a good amount of notice. Even if none of that comes through, we're still going and we'll worry about paying for it later, LOL.

~~Veronica

Oh, and about the physical/neuro difference you were talking about for OT. We were once denied OT for Stevie in his school because "his small motor development was consistent with his cognitive development"... of course, his cognitive development was 90% delayed, ugh. Sometimes these specialists drive me nuts, LOL.

"His small motor development was consistent with his cognitive development" OOOOOOOh, yes, you're right--that's what she said. And I totally agree with you about how nutso it can make you!!

Wow, good luck with the evaluation in Seattle! Is it a long way from you? It sounds like they're really planning to cover a lot of territory with the testing.

Alex has been barely hanging on these past few days. We have a huge fire here (20,000+ acres and only 10% contained). We watched the flames race across the fields on the other side of the street from us. We were packed and ready to evacuate but the fire took a turn up the canyon and spread quickly up into the hills. The town above us is almost completely shut off and all of the lower portion has been evacuated. Dh helped the firemen and stayed up all night to make sure the fire didn't turn back our way, then the next day (yesterday) he had to go out to his dad's to help there. His dad has 80 acres and most of them burned up, but the fire jumped over the house and headed on its way. Dh had his dad and stepmom leave and he stayed and once again helped the firemen, then stayed the night there to make sure everything was ok. Our road is completely closed now so if we leave, we can't get back in. It's a strain on anyone, but for a kid like Alex it's nearly unbearable.

Yes, they are planning to cover a lot, but that's because of the distance. We are in the middle of Alaska, so it'll be about 6 hours on a plane to get there. The last time we took Stevie on a plane, he was SO good, so hopefully we'll luck out like that again (but unlike last time, this time I have a back up sedative that I'll have for an emergency).

OMG. how stressful for all of you and poor Alex, change is so hard for these guys, then add in stressed out adults and you're heading for a real melt down. I hope things settle down for ya'll soon and fires die down. Stay safe!

I thought some of you other 'Extra Credit Parents' might get a kick out of this --
Last night I asked my 12 year old son (autism spectrum) to describe himself - not really sure why - and these are the words he used:

- Happy
- Fun
- Peppy (wonder where he got that? but totally accurate!)
- Nice
- Handsome

Talk about a kid with a healthy self-image!
I told him he was exactly right, but that he left off a few very important ones: Hardworking, affectionate and honest.

It just made me feel really great that the first word he used to describe himself was 'Happy' -- Hope it lasts!

Here's another funny story I thought you all might enjoy --

Older DS just returned from a visit with his paternal grandparents, who are 1st generation Chinese American. They've generously offered to take DS to China next year, and he's predictably thrilled. So thrilled in fact, that he installed Rosetta Stone language-learning software on his computer and is attempting to learn Mandarin.

So last night DS and I were clustered around his laptop trying to say rudimentary phrases in Mandarin and being 'graded' by the software. My grades were dismal! (which surprised me because I'm generally adept with foreign languages) Older DS's performance was really spotty, with some laughable results and some really good ones.

Then younger DS wanted to join in and try it. It is important to note that DS#2 is a kid with pretty severe speech issues (childhood apraxia). He needed seven years of intensive individual speech therapy to get to the point where he can be generally understood in English. But since there were plenty of awful results and lots of laughs to go around, we let him try it too. And what do you know? He consistently got great scores! So apparently, there's something inherent in his speech patterns that 'works' for Mandarin.

Anyway, we all had a fun, fun time and both DS's were thrilled with how well #2 was able to perform.

Sweeby, those are great stories! I wish I had some good stories from my DS, but it has been a tough summer for him. He is very jealous of my new relationship, his OCD has kicked into high gear, he's having frequent migraines, and he seems generally pretty miserable. Part of that is just being 13, another part of it is his own seeming determination to remain miserable despite being given all of the tools to climb out of it. He refuses to work with his counselor on the cognitive behavioral therapy necessary to overcome the OCD, he refuses to be consistent with his school work, and he refuses to lighten up and be civil to a guy who has done nothing to merit being treated any other way.

I have had a lot of fun this summer without DS, but it leaves me feeling guilty about leaving him at home or with friends or family. He is invited to come along to most of our activities (biking, hiking, kayaking, etc.) but he refuses. He also refuses to do anything with me on our own. He seems to just want me to stay home so that we can both be bored and miserable together (this was going on before I started dating, btw). But if he is determined to live a miserable life, he's going to have to do it on his own - - I'm not going down with him. Does that sound terrible?

I've been doing this alone for 13 years and I kept thinking that if I worked harder and got him every possible resource, things would improve. I did work harder, got him into a great private school, got him the best pharmaceutical help, the best therapy, etc., and while it has kept him from being hospitalized, it has certainly not led to real happiness or fulfillment. At this point, he has all the tools, he just has to decide whether to use them. I can't do that for him.

Sorry, I know this sounds depressing. Any words of wisdom are welcome.

Hi Paige -- Sorry to hear about your DS's rough patch. Adolescence is absolutely dreadful for most of us... Even John is getting 'testy' now, and he has the sweetest disposition of any child I've ever met. (I know how lucky I am!)

"Part of that is just being 13, another part of it is his own seeming determination to remain miserable despite being given all of the tools to climb out of it. "

You're absolutely right. As illogical as it seems, there are some kids who are just like this! Born that way. It's just part of their natures. I was one of them, and my older DS was one of them. If you were not (Hubby wasn't), it's very hard to understand. For whatever it's worth, if your son is like that, for some reason, he just needs to feel miserable right now, and anything you do to try and make him happy (a.k.a. "spoil his misery") will just annoy him and cause him to lose respect for you (because he knows you're kissing his --- and that he's acting like a ----). This may be part of his way of separating from you as a child, but he still really needs you to act like a parent.

For a neuro-typical kid, I'd just recommend giving him lots of space, allowing him to act nasty up to a certain point -- but strictly and consistently enforcing that limit so he knows he has one. And then during the quiet peaceful intervals, just tell him that you know he's going through a rough patch but that it IS temporary, and that you'll love him always, no matter what. I guess you'd have to adapt somewhat since your DS isn't so typical -- but you've been doing that successfully for years, and I'm confident you'll find a way to do it now.

What helped older DS and me sometimes was to watch movies or TV together, and whenever I'd see an awkward adolescent, just point out to DS that that kid in the movie was sure going through an awkward stage -- that his hands and feet were too big, bad skin, funny hair, squeeky voice or whatever -- and that adolescence just sucked! Thank goodness it was something everyone went through, that it only lasted a few years, and that life on 'the other side' was so much better! (Which is plastered all over TV)

"But if he is determined to live a miserable life, he's going to have to do it on his own - - I'm not going down with him. Does that sound terrible? "

No! It sounds smart and I agree completely!
Don't let him spoil your good times. Refuse to let him spoil your happiness -- because part of him wants to. (The nice part of him doesn't, and will understand and even approve of your life-improvement measures.) Continue to invite him -- maybe insist that he go once a month (on something short and relatively painless - his choice of event) -- just so he can see that BF is a nice guy and that happiness isn't fatal, even though it feels 'off' at this point in his life.

For what it's worth, I outgrew that ugly phase in my life and so did my older son (by 15 1/2 or 16) -- so odds are good that your son will too. Just keep hanging in there!

Sweeby, thank you for the kind and wise words. Yup, he does act like I am trying to "spoil his misery" - - the perfect phrase! Your own personal story is very helpful to me and gives me hope.

I am not letting him spoil my happiness, and I do understand his conflicted feelings about this. I have insisted that he come to the beach when we have gone, because I know this is an activity he enjoys. On those occasions, DS and my BF have had fun in the water together, although it is really more "parallel play", like toddlers, than interactive. Other than that, I have left it up to him on the other occasions I've invited him, but I don't let him control my return time despite his best efforts. He will say "I want you home by 9 so I'm not scared", but we both know very well he's perfectly happy being home until 11 without me when I'm at a friend's house instead of out on a date. So I tell him I will be home by 11, and that if he gets scared, he's welcome to call a neighbor (we have very close neighbors). When I know we will be out later, I arrange for him to have a sleepover somewhere.

I do think my BF is growing on DS, but he can't bring himself to admit it, so I don't even ask. I just tell him when he has done well being polite and (borderline) friendly.

To his tremendous credit, BF has done a great job of not taking things personally and offering assistance to DS when it was helpful. DS has arachnophobia (fear of spiders) big time, and BF turned around a meltdown over a big spider by turning it into a "spider hunt", with special protective gear, a tupperware container, and his quick tupperware-trapping reflexes. Before you knew it, we had the spider in a tupperware sitting on the desk while we googled it, then found a suitable new home around the block to release it. It was great fun, and I was very happy.

In other news, DS has decided he wants to try the local public high school next year. I think it's a recipe for disaster, but I also think I have to honor his request, after forcing him to attend this private school for 3 years. I just have to make sure I've researched some backup plans.