Finally! we are well enough again!

I had considered keeping Miss Iz home an extra day to rest since she was the sickest of the kids but you would think I had announced the End of the World by the way she reacted!  That kid wanted to go to school SO BAD.  She was going to hit her 24 hour fever free within an hour of school started so we went ahead and went in--her teacher said a lot of the kids  had been out that week so I guess whatever virus was hitting everyone hard.

With both the middle kids better and off to school, there was nothing standing in W's way of finally having a therapy session! Miss M came to do OT with him and he was so very happy one of his "friends" finally came to see him :)  He was a little uncooperative but I think that had more to do with the whole week's schedule being thrown off.  Miss M was still pleased with his work, though, so it was a good session.

We went to pick Miss Iz up from school and came home for a quick snack before W's annual meeting for early intervention.  All his therapists and his coordinator came plus they introduced Miss S, the educator who will also start coming to see W once a week to work on his attention span.  We talked about his progress and defined the goals for the next six months to a year.  So with the new Educator added in, he will get 30 minute sessions four days a week.  Busy kid :p

After B came home from school, we had to pack everyone up and head for S's school to have a 504 meeting--he already has an IEP that pretty much covers everything  but they wanted to start a 504 as well so sure, why not, I'll bring all my kids to your school and set them loose on your conference room!

Then it was off home again for dinner and then everyone back to S's school for the band concert!  I have to admit, that was kind of a horrible experience.  Not the band!  I thought they did rather well :)  But I had three kids at bedtime, trying to sit in uncomfortable bleachers listening to loud instruments for an hour.  They were restless and tired and unhappy and *sigh* we get to do it all over again in a few weeks for the orchestra concert :\

Let's celebrate!

Today was S's IEP meeting and this year we did a full evaluation because I just wouldn't leave them alone about it :p  Back when he had his first eval three years ago, the school psychologist ruled out learning disabilities.  One of his private therapists did some evaluations with him that showed him with a probable learning disability and the therapist also had some questions about the evals the school psych did since the results did not seem consistent with no learning disabilities.  The therapist recommended we try to get another set of academic evaluations through the school but they were not very willing to do it and stated that he was already receiving the top level of services so an LD diagnosis wouldn't change that.  That particular year, there was a new school psychologist and she kept saying she'd reviewed the previous psych's testing and it was very thorough blah blah blah.

Well, I don't give up easily and we had yet another private evaluation with the neuropsychologist which showed, wait for it, learning disabilities.  So I brought yet another set of results to them this year and hey, whattya know, yet another new school psychologist this year.  However, he listened, took my concerns seriously, did full and thorough evaluations, and now S has an official school diagnosis of multiple learning disabilities and his services at school are increasing to help him develop learning strategies and skills.  He tests extremely high in intelligence so he has the capability, he just has problems getting his abilities there because he's just not processing the new material very well.

LET'S CELEBRATE!!!!!!

I do find it so very sad, though, that getting a struggling student help is such a hard and long battle that when you finally get the confirmation of a learning disability, you want to celebrate instead of be sad about it.  I hate that this is one more hurdle he has in life, that it is another struggle he'll have, but at the same time, I'm so very happy that it is now recognized and it won't be just me trying to help him via trial and error--he'll have the professionally trained special education professionals working with him on all of his LD areas instead of just the reading help he's been getting.  He's already in fourth grade and has lost several years he could have been receiving extra services--I just hope we have enough time to get him caught up before middle school when things get a whole lot harder :/

Another EEG and stuff

My Busy Little B had his routine EEG the other day--he did really well!  He was very cooperative and managed to not freak out about having the leads set up.  He needed lots of reminders to stay still and  not try to touch the wires but he tried really hard to do what the tech asked of him.  She got everything she needed and he got to watch Bob the Builder :p

Dr. W, the neurologist, said if the results are normal, we will get him set up to do the 24-hour EEG the way Isabelle did, just to make sure he's not showing any seizure or abnormal activity because the routine one is only 20 minutes and can miss things.  With a family history of seizures and Iz having them, he wants to be sure.  They said we should have results in a few days so maybe Friday or early next week.

MRI is set up for next month--that one makes me nervous.  It will be sedated because of his age and anything with sedation gets my nerves going full swing.  But I am also nervous about results--we went into Izzy's MRI expecting maybe a structural issue causing the seizure activity but a good chance everything would be just fine and came out with numerous issues, including cysts that could require neurosurgery some day.  Nerves.  For the next month.  Fun times.

In happier news, B really likes his new therapist and has been cooperative with her in getting to know her and talking about behavior.  He has been doing really well in school.  The bus has been a bit of a struggle--he is supposed to be harnessed but they don't have one for him and then complained he won't stay in his seat.  Um, yeah, that's why his IEP discusses the need to be harnessed :p  They said they will get one to use for him so that should help.

He had his very first homework assignment tonight--he had to trace the letters in his name three times :)  He kept telling me "my arm is so tired.  it can't write anymore."  I told him then he'd better get to bed right away and fall asleep early so I could wake him up early tomorrow morning after his arm had a chance to rest so he could finish tracing.  He decided his arm wasn't tired after all and finished his homework ;)

School is almost back

I think all of us are feeling a little anxiety about school starting back up.  S is suffering from is "normal" anxiety but I think once he gets back and is reminded that now he gets to talk to his friends, he'll be feeling good about his return.  I had talked with his new teacher on the phone and met her in person at the Open House last week and she seems not only nice but also committed to helping S be successful.  She had consulted with his third grade teacher to find out some of the strategies that helped him last year and she had already set them up :)  This teacher was handpicked by last year's teacher and the rest of his IEP team so I am thinking we will have a good year.  He's not convinced, though!

B is very excited but I am a bundle of nerves.  Change is always hard for him and while I am hoping things go well, I am expecting some rough days (or weeks. maybe months). He and I went to his Open House together and he liked the teacher and aide and classroom but there were no other kids present when we were there and sometimes that really changes things for him.  Fingers crossed that the other students in his class are ones he will immediately declare his friends and want to hang out with every day :p

Izzy is so excited about the upcoming school year and she will NOT believe me that she isn't going to school.  She's still on the wait list and the Early Intervention playgroup she might be attending won't start for at least another month.  We need a salary raise so we can get a membership to the Y again so she can take a class or something :p I need to check out the local library and see if they have any programs running for her age group!

Busy busy busy!

Things have been busy around here--lots and lots of driving for therapies and appointments!  But its a good busy because things have been holding pretty steady and we are just in the rhythm of getting to where we need to be :)

Izzy's speech therapy has been going so well since she started the seizure meds!  She has met several of her goals and we may be finished for now in another month or so :)

Early Intervention has been evaluating her to see what her transition out of EI will be like since she turns three in the fall just as the programs are starting back up.  They are thinking she does not need the full-on special education preschool the way B did but they also are not sure how she would do in a completely mainstream classroom by herself.  But they would really like to see her moving on to some sort of program to continue working on speech and emotional/social development.  Perhaps a regular classroom with an aide?  They are checking to see what's available and hopefully we will have a plan in the next few weeks!

B had his transitional IEP meeting so I could meet the staff at his new school.  He's going into a special education classroom with a goal of hopefully being able to attend specials with the mainstream students and then over the next few years build up his time mainstream until he is there most of the time.  We are anticipating a rough transition, though, as he doesn't do terribly well in new and unfamiliar places so it may be a while before they attempt mainstream specials.  Maybe he'll surprise us and be just fine switching schools!

Both B and S have had evaluations with the new neuropsych so now its just time to wait for results and to get a plan in place to move forward :)

And that's about it :p

In which I vent a bit.....feel free to skip :p

This path we are on, trying to get our kids set up with doctors, and services, and therapies, and such that will help them, can be so very frustrating.  Dealing with red tape, insurance companies, scheduling, normal everyday stuff on top of it, people with egos, people with ulterior motives, people who are busy, people who think they and only they are right, the crazy busyness of the schedule we have right now.  I often hear "I don't know how you do it.  No, really, I can't believe you can handle all this" and yet I also hear how I don't do enough.  Right now, S's special ed teacher is giving me a rough time, claiming that I am not reinforcing her teaching at home and its so important that I do.  And yet I do--I work with him nearly every day, despite the fact that he hates it, that he feels the stuff she sends home for reading is too "babyish".  He tells me she doesn't use this stuff at school so we don't need to at home, he tells her we don't do it at home.  I don't let him get away with it and remind him she wouldn't send them home if they weren't still using it so we will do it anyway.  She was totally played by him and ate it up and I get the condescending email accusing me of not doing enough.  UGH.  I waited several days to reply because my initial reaction may have made her cry and while she rose to the number one spot on my List of People I Dislike, who knows how long she will be S's special ed teacher.  He could be working with her for years so I should try to maintain some peace and need to think through how to respond. 

IEP, round two

A few days after B's IEP meeting, it was time for S's meeting.  Unfortunately, there were no toys for Iz there but she soon discovered the white board and markers LOL  The OT also had some cards she uses with the kids and let Iz look through those, too, so Iz was reasonably entertained so we could talk.

This year has been up and down.  Sometimes things would go well and sometimes they just weren't :\  Part of it was they had some staff turnover that affected S and things were lost in the transition.  It was frustrating that we had a plan in place to help him but lack of communication between old, new, and transitional staff meant it wasn't always working.  I dunno, perhaps starting off the meeting by stating how frustrated I was may not have been the best but on the plus side, I have seen an effort on several of the staff's part to communicate better and more clearly.

Over the last several months, we have gotten several "hints" that we need to be thinking about medications for S for his ADHD.  No one has come straight out and said it but reading between the lines, the implication is strong.  At this point, I'd rather see them fully carry out his IEP and see if we can get back the results we had at the end of last year!  And after the IEP meeting, I am not at all convinced we are at the point of medications since we didn't even talk about his ADHD affecting his learning and performance in school.  Everything was centered around his sensory processing disorder and his ability to learn.  I would really like to say learning disability but nothing is diagnosed and their evaluation says he does not have one.  However, the OT is at a loss because he should have outgrown seeing/writing letters and numbers backwards but he has not.  And she is in agreement that he doesn't seem to see a difference between a correct letter and a backwards one--put them next to each other and they look the same.  And letters that are similar, such as b and d or p and q all look the same to him so he has a fifty fifty shot of picking the correct one :\ She is working with him on writing them correctly but unless we can find a way to teach him to distinguish between backwards and forwards, he will still struggle to read because sounding out the wrong letter means he doesn't get the words :\  I see many of the same letters/numbers backwards as well but the similar ones look different to me so I can distinguish between them.  I'm not sure how to help him with this and frankly, the staff is at a loss as well.  The head of his IEP team is researching and hoping he can find someone out there who wrote about it and has some tips.  I am hopeful the new pediatrician (if we ever score a new patient appointment--how many hoops does one have to jump through?  And why can't the people who schedule appointments tell me everything I need to do the first time I call instead of giving me one more thing every single time I call :\  I know the office is busy and it is supposed to be one of the best in the area but can't you make your own appointments instead of outsourcing the hospital customer service staff who can't seem to make this easy?  :p) will have some insights and suggestions and give us a referral for services since reading difficulties are one of their "things".  Fingers crossed that when I call again today, all my Ts are crossed and my Is dotted and they give me an appointment LOL

Overall, though, I am pleased with how the meeting went.  We had a nice discussion of things that work with him and I brought up some things we do at home that are successful--those are now part of his IEP and with the improved communication I am seeing, I can see them implementing and having success with it :) 

IEP, round one

The end of the school year is getting close and around here that means IEP time--both boys have their IEP reviews in March.  B was first up and one lovely thing about an IEP meeting at a preschool is the fact that there are toys and books everywhere so there was plenty to keep Izzy occupied while we talked :)

I think one of the more difficult things about putting together a plan for B is the fact that we don't know exactly what we are working with.  His evaluations through Early Intervention and the preschool show there is something going on but those evals don't give a diagnosis.  He has some delays but we need the pediatrician involved to get diagnostic to know exactly what is going on.  Things like high-functioning autism and OCD have been put on the table but without those evaluations, no one knows for sure.  We know that he is speech delayed but has been improving with therapy (although he is still too far behind).  We know that he is incredibly rigid and inflexible and that this interferes with his social development--he has a clear idea in his head how things should go and he does not handle deviations from that.  We know that he has little rituals he MUST do but we don't always understand the rules for those rituals and he seems confused that we don't understand.  Getting the proper evaluations is a fight every step of the way--so far, none of the local pediatricians have seen any cause for concern.  Even the one who thinks he is autistic :\  They want to wait and see if he grows out of these behaviors but the preschool teacher and social worker are in agreement that the sooner he gets specialized help, the better.  A diagnosis gives them a direction to move in.

At this point, my next move is to move him to the pediatricians at the Children's Hospital.  Its a drive but from all that I've read and heard, they can get him the evaluations he needs to find out what is going on with him.  So we are working on that and hopefully he will have a new patient appointment soon!  And maybe, just maybe, I will finally have a pediatrician I can work with instead of constantly fight against :p