The IEP meeting

The long awaited, and 1/2 dreaded IEP came and went yesterday.  I started looking over the IEP in place for this current school year.  I wanted to see where S came into the school year and how far she came based on the goals that were given.

If you are reading this, and have never heard of an IEP before, it stands for Individualized Education Plan.  A child in special ed, or getting any services from the school district must have an IEP in place.  It’s a legal document with remarks from teachers and therapists. Recommendations.  Test scores if evaluations were done.  It is a lengthy package.  It states what services are currently in place and what will be in place the following year.  Straight foward, right?  It’s so not. And if you are not educated on your rights or get picky about wording, you’d be surprised how often the district will violate your rights or the IEP.

For example, some children have a personal aide in the classroom, what is called   a shadow aide.   You can get an aide.  but you might get someone not trained for the job,  or someone who incapable of caring for themself, muchless be there for a child.  But the wording in the IEP is an aide.  Doesn’t say what kind of an aide, nor does it say a “physically functioning adept  and trained aide”.  It just says aide.  It’s legal. and binding. and they don’t have to tell you anything about it, or if the aide starts failing to come to school.  Unless it says that they will notify you,they don’t have to.

We are going into our IEP meeting.  I had a sense of dread. I really did.  I didn’t know if what I learned from the teacher and therapists a month ago would still stand.  The head of special services knows what the district can and can not give.  The message is given from top down.  It’s almost planned without telling the family.  If you think that the school is always on your side, and you just go along with it all, you’ll have the best relationship with the district.  You’ll never know if your child is getting the best that they can do.

Honestly, for us, it could not have gone smoother.  The case manager, CR, and S’s teacher and the resource teacher were there.  Both teachers advocating for S.  It was nice to see.  They laid up specifically what S was doing so well, where she made a lot of progress, and where she was really struggling.  The questions that we brought up about S’s different pull-outs or her in-class support, both teachers answered convincingly.  CR came into it all, too.  very nicely and politely.  He looked to the classroom teacher for the answers if he didn’t have them.  He wrote on the draft of the IEP for things that they added.  He added the ones that we wanted to see, too.  No buts, or we’ll see. no fights.  Small things we asked for, he gave them.

The classroom aide was the big one in our minds.  S didn’t need a shadow, but a shared aide in the classroom was strongly preferred by us.  Mrs. B had said we would need to speak up and really advocate it at the IEP meeting.  We were all geared up to do it.

Funny thing, CR brought it up, saying it wasn’t in the IEP.  Looked at the teachers, and said, “We didn’t really get a chance to discuss it.  What did you think?”  I felt set up at that very moment.

Mrs. B came up with several reasons why she wanted to see S with a classroom aide next year.  The resource teacher brought it home.  She nailed it for us.  My husband and I never said a word.  CR wrote it right on the draft of the IEP. “Classroom aide.”  DAILY.

Now, I don’t know if that means one will be there the entire day or just a couple of hours.  Nor do I know if that means we will have one who can physically keep up.  But at this point, I have to take off a little bit of the wariness and be happy.  I have to enjoy the fact that they gave it all to us.  The teachers came out and played. CR was not coming out swinging against us.

It was almost too easy.  I keep looking through the IEP draft to see if we are missing anything.  Only time will tell.  But for right now, I’m breathing a sigh of relief. It’s over.  Currently, I approve of what we agreed to.  We didn’t sign anything but we are well on our way.  Looks like we are giving S a lot of tools of support for First Grade.  And despite all the budget issues, I’m grateful that even if the quality of the services will be in question, at least they are there, in place.  We keep Step and Kev, and hopefully that keeps things moving forward for us.

Navigating the school system-part 1

We had our meeting with the school last week.  It was to review the re-evaluations and determine eligibility for services next year when S goes to Kindergarten.  Talking to a few of my friends in S’s school program, everyone had a different term.  Some had “annual review”, others had “IEP” (individualized educational plan for those children that will be “classified”), and a few of us had review of results of evaluations.  It was my husband and I, S’s teacher, and the learning specialist.

The learning specialist, Ms. H. had done her evals with S, and I had read her report.  I mostly agreed with her findings, positive and negative.  I believe she saw S for who she was.  Ms. H had also remembered that I used to be a teacher, and asked me a few questions about it before we began.  Later, she went through page by page all the results of each specialists findings and what struck her most.  Every other sentence was “Since you are a teacher, you know….”  ”Well, I don’t have to tell you since you are a teacher…”  I really disliked that.  I never advertised that I was a teacher to anyone.  I think it works for and against you.  It can set a teacher really on guard to know that the parent is a teacher. I can’t quite explain it, but I used to feel weird when I was working.  Maybe it’s the way someone tells you.  If it’s casual and oh this is what we have in common, that’s one thing.  But when it’s a loaded, knowing look, it’s rather threatening.  Also, I know what I would have done in a certain situation, but everyone is different.  Just because I might handle something one way, S’s teacher could do it a totally different way.  Who was I to tell her anything on how she runs her classroom?  I just kept it to myself.  It came out once with Mrs. H, who told S’s teacher Mrs. M.  In this particular role, I was going in as a parent, not as a teacher.  My experience is a few years dated, and towards a completley different school system in another state!  I actually DON’T know too much about handling IEP’s and special education, and the classification of children in the system.  I wanted her to be able to explain it all to me, why she was doing what she was doing, why people wrote what they wrote.  I needed it to be broken down so I could go back and look at everything myself.   So that off the bat irked me.

Mrs. H wrote in her passage to the IEP claiming communication impairment for S’s services for next year with a few clauses that could potentially cover other areas if the communication impairment progressed well enough to not need speech services.  That way, S could still get her OT and resource room.  She started to talk about diagnoses for children that would help them continue services.  Beforehand, I talked to some other parents who already had their IEP, and they were told they would need a diagnosis, recent one at that, to receive full benefits of services.  Strangely, all the evaluations the school had done showed the child needed the therapies.  So regardless of any diagnosis, if the child shows he needed them, how could they deny him just because he didn’t have a recent diagnosis?  Anyway, we shared S’s diagnosis with them, Semantic Pragmatic Language Disorder and an Anxiety Disorder.  Mrs. H looked puzzled.  She continued on her list of other children’s diagnoses: ADHD, PDD-NOS, PDD, ASD, Anxiety Disorders, Sensory Processing Disorder, etc.  She gave an example of a child who’s parents weren’t comfortable with the label, didn’t want it in the IEP.  They eventually came around and were “really supportive parents in the end of the child.  They went out of their way to say a nice compliment to each individual of the child study team to get off on the right foot.”  Bottom line of this weird anecdote was he left PreK with a PDD diagnosis and got a decent education through our town. He is now in 3rd grade, seems pretty typical and rather quirky.  We didn’t know how to take that really.

I stated the diagnoses again, and Mrs. H asked me who I went to. I told her, and she gave me one of those “Ahhhmmmmmm”.  Then, she went on to say that many doctors don’t like to give diagnosis so early on in the child’s life.  Depending on what she was aiming at, I completely disagree. ADHD, maybe…5 or 6, or even 7.  But ASD, PDD, PDD-NOS….I’ve seen them given usually about 2!!!  I almost think they jump it too early!  The town has a PDD preschool class!  If doctors didn’t like to give it too early, then there wouldn’t have been a need to start that class.  So what was she really trying to say?  I told Mrs. H and M straight out that we asked the doctor in several different ways if he didn’t think S had some form of Autism.  I believed it for most of the 8 months I waited for the appointment!  I had to be sure.  He was sure.  He thought S had some autistic characteristics, but that he didn’t believe she was on the spectrum.  And here is another specialist, who spent 30 min with my daughter, spinning her own words without coming right out and saying what was on her mind!

I’m having a problem lately with people that say something and beat around the bush.  They are making all kinds of insinuations without saying what they really are trying to say.  Either way, I might take it offensively.  But just come out and say it, for goodness sakes!  Don’t hide behind some noble window and make inferences.  That’s so cowardly.  Say it or don’t say it at all, but don’t do an in between.  I mean, you can be nice about whatever you are trying to say.  No need to be rude or mean.  However, don’t be coy and meander around the topic.  I don’t have the patience or the time for that crap.  To be continued.

the last to know

I finally figured out why S has been out of sorts, and it took some investigating.  I wrote to S’s OT at school asking if her sessions went okay, and she said it was fine.  S was a little on the quiet side, but was compliant and did her work well.  However, she mentioned to S’s teacher about it, and S’s teacher told the OT that all the testing and evaluations in school was making S anxious.  The OT suggested that I talk to her teacher.

I wrote an email explaining the change in behavior I was seeing, as well as writing in S’s home-school notebook about it.  Finally, I left a message on her voicemail.  I got an email the next day stating, yes, S was super anxious.  S has been going through a month long process of re-evaluations from the child study team at school.  They need to determine what services, if any, that they would recommend for S in Kindergarten.   I knew her OT and SLP (speech-language pathologist) would do her testing, and the school’s learning specialist would, too.  In fact, I had already received everyone’s reports.  I assumed we were done.  But a Dr. K, probably the school psychologist, was pulling her out, too.  S is wary of a change of routine and strangers.  S wasn’t having it, and her teacher had to go with S to get the eval done.  Her teacher’s email continued with that this has been the case for a couple of weeks, and that she was working with S on getting past her anxiety.  The email was matter of fact and rather dismissive.  To be fair, the tone of email is tricky.  Still, I felt slighted.

After sitting on this for 24 hrs, I decided I needed to talk to her teacher.  I left her another voice message the next morning, and she called back during her lunch hour.  I understand as a teacher, those lunch breaks are SACRED to get through the afternoon.  You have to have that down time.  As bothered as I was, I was still appreciative that she called.  I wanted to know how bad S’s anxiety was in school, how it was interfering with her day, and if all her evals were done.  If I could have seen her teacher wave her hand, I swear she was.  The testing finished the week before, and she had to go with S.  Dr. K went through a test, and didn’t press too hard when S didn’t want to do anymore.  (I’m sure this will be a “telling” report when it comes).  Again, the tone was non chalant and dismissive.  I told her about S’s episodes at home and how much has changed so suddenly.  There was no “oh, I’m sorry she’s going through that” or “poor thing”….anything that would have shown any ounce of compassion or sympathy.  You can be non-chalant and sympathetic without being dismissive.  I was very surprised.  I thought we connected well with this teacher and that she was such a great champion of S.  At the very least, I let her know that I just wished someone had said something to me.  Again, just an “oh. yeah.”

I can deal with S’s behavior at home.  We can work through it.  But I should have known.  Here S is having what seem like tantrums over having to stop playing and go to school, and she’s having panic and anxiety attacks.  If someone had just keyed me into the information at hand, couldn’t I have been a better mom and advocate and safe haven for my child?  I knew that S was being evaluated, and I thought she was finished.  I thought her weekend anxiety was from her playing in the town soccer league.  Maybe I should have been more sensitive and taken a step back to think of what else it could be. I’m not asking for school to tell me everything.  I understand the need to filter and let some time pass to see how things pan out.   But the bottom line, as her parents, why would we be the last to know about our own child?  particularly when she is clearly having these anxiety manifestations in school and at home?  Isnt’ there something wrong with that in itself?????

sudden signs

Recently, over the past 2 weeks, my husband and I have seen a slight rise in anxiety with S.  It has been mostly over the weekend, with the anticipation with soccer.  We’ve come to see the signs.  S has a shorter temper, snappy responses, whiny questions, and transitions are difficult.  If she is tired, forget it!  Asking her to come to the table for a meal, even if she is hungry, is met with yelling and stomping.  Telling her to go to the bathroom before we go somewhere is followed with more yelling and hitting the couch.  Having her put her jacket and shoes on is combatted with cries and kicking at the ground.  These events don’t happen every transition nor everyday.  But when they are on the rise, we know something is going on.

We had a crazy, busy weekend, and it was a trillion degrees here.  S’s soccer game was mid-day and easily 90 degrees.  Way too hot.  We met good friends for lunch, and it was again, way too hot.  We thought going into the school week, S might have been tired.  Still, I wasn’t prepared for Tuesday’s reactions.

The morning started fine.  S woke up very early, and led a happy morning.  She played, ate breakfast, and we got ready to go to OT with Kev.  We got there a little early, but she was fine.  Sometimes when we have to wait for something “too long”, S can get a little restless and whiny.  But this day, she was fine, pleasant, and had a great session.  Usually, we race home, gulp down lunch, and turn around to go to school for an early OT session at school.  All that in 30 minutes so she doesn’t have to get pulled out of the classroom.   She loves her school OT and likes the friend she has it with.  

This day, I changed the routine.  On nice weathered Wednesdays, we meet friends for lunch at the park before school.  But Wednesday was supposed to rain, so we met on Tuesday.  S and M ate lunch with their friends, and went off to play.  My allergies were acting up horribl,y and I started to get some hives.  I was miserable. I just wanted to get home.  S and M didn’t give me any problems leaving, but S was wondering why none of her friends were coming.  She asked me several times in the 5 min it took to go to school.  I said that they would be there soon.  We got to the lobby of school, and S’s OT was waiting for her, only her friend hadn’t shown up.  I quickly told S I was going.  Normally, I would say, “have fun” or “enjoy yourself”. This time, I was quick and abrupt, and said, “Ok. I’m going to go.”  S burst into tears and said she wanted to go home, too.  I gave her a hug and quieted her down, and she perked up when her OT offered to stop at the water fountain.  And off they went.  I talked to the OT later, and she said the session was fine. 

  During dinner, S’s eyes welled with tears, and she said, “I just wanted to go home.”  She got over it very quickly.  An hour later, same thing.  After her bath, as she laid in my bed looking at books, watching a short video, same thing.  I put M to bed early that day since she didn’t nap so S got my full attention.  Dad was coming home late.  We read her bedtime books, and I tucked her into bed.  As I gave her a kiss, S burst into teras.  She was really bawling.  Very loudly.  She said she didnt’ want to go to school anymore.  She didn’t want to go to bed anymore.  I was miffed.  I sat with S for 20 min, wiping her tears with a tissue, rubbing her back, calming her down.  She would calm down, and then start to cry again.  It took her 40 min to finally pass out. 

I sat by myself thinking what the hell happened?????  I  sent emails to her OT, her outside OT Kev, her teacher, everyone.  I was so miffed.  And my heart was wrenching seeing my first “baby” so obviously anxious and upset.  She couldn’t explain what it was all about, just that she wanted to be home.  It’s the most helpless feeling.  I couldn’t order her to feel better and stop crying.  I couldn’t protect her and shield her from whatever was raising her hackles.  

When she breaksdown like that from anxiety, it’s hard for me to decide if I should not necessarily coddle her, but give that long shove of TLC, or do we go tough love.  Often, the TLC makes S cry even harder or prolongs it all.  Sometimes tough love cuts it off, and she moves on faster.  It’s such a difficult line for me to figure out.  Does anyone truly know which is the “right” way?? Tough love seems heartless. And cutting it off, while it makes S move on, doesn’t necessarily address what is bothering her.  But the “coddling” approch (which it’s not really coddling, but I can’t think of the right word for it), can make it last a LONG LONG time.  S settles down until I let go and try to move forward.  Then it starts all over again.  I try a combo of the 2.  Does anyone else do anything differently?

Wednesday was a bit better, but still a difficult time going down for the night.

Either way, this was a sudden, but DEFINITE sign…..something is amuck in the world of my S.  And she is letting us know.  This is her way of saying, “HELP ME!”  Kids always let you know one way or another that something is going on with them.  We just need to learn to read the signs, and realize that they are indeed flags.  Only then can we start asking questions to all those involved in the child’s life to help figure out what the source is.  We don’t always pinpoint it, or know for sure.  But as their parents, doesn’t our conscience compel us to do right by our kids?

Standardized test scores

When someone mentions standardized tests, SATs and ACTs immediately jump out at me.  But then when you have to talk about it in the context of young children, I thought of Basic Skills tests and state run tests.  Then, I had to really narrow it down to tests given to children at the preschool/PreK level.   As a Kindergarten teacher in NYC, we looked at the ERBs.  (Educational Records Bureau).  It was an assessment test given to 4 year olds.  I could go on and on about the things I saw, the stress families had, the measures they went to ensure a good score for their 4 year old.  However, that’s not the point of this post.  

S’s school has been in a month long process of re-evaluating her to see what services, if any, she would need entering K.  Seems pretty straightforward to me.  I have no illusions about S.  I know that she has made tremendous progress over the last year, even the last 6 mths alone.  She goes through these periods of great leaps forward and small, tiny baby steps.  All that matters to me is that we continually see progress.  I’m not talking constant flash cards and doing linear equations.  Just simple what she is working on in her therapies home-school connections.  I always believed in my classroom that any home-school carryover (going both ways) was the best way to help any child, esp one who was falling too far behind.  So we do lacing card activities, do word games to practice different speech categories, practice catching a ball in our hands instead of trapping it against our body, skipping, articulation, etc.  Whatever they send me.  And S is always game because she thinks its fun.

So in my bubble world, while things can get tricky and difficult at times with S, I believe that everyone is always positive when they talk about S.  I believe that things are going well.  But how well is well when we get our reports back?  Schools, OTs, SLPs…they all use different standardized tests to measure whereabouts S fits on a scale.  And each one I have seen over the past year or 2 has mixed reviews.  

In the summaries and explanations, the tester has captured my child.  The strengths and weakenesses are all laid out.  It’s a tough pill to swallow to see some of those weaknesses, but I’m not blind to it.  We wouldn’t be getting services if S was not considered to have delays.  But when you get hard numbers and percentiles….I’ll tell you, it’s a slap in the face.  I feel like someone has thrown me in an icy river, and even though I get my head up, I’m just not quite sure what to do or feel.

As a teacher, I always said that raw scores didn’t matter.  In fact, with the ERB’s, I looked at the written description for behavior/emotional factors or quirks.  You take 1 or 2 days to test, what you get from a child that day is a crap shoot.  If they are tired, cranky, hungry, or just “off”, those scores may not reflect the child’s true abilities.  Many tests have specific criteria.  They can’t be prompted or you can’t help a way that may assist them to the right answer, or a time limit.  Points can’t be given if it’s not followed to that specific tests set of rules.  

But as a parent of the child being tested, it’s hard to ignore.  S’s scores on some of the small motor and in speech were just devestatingly low.  S has NEVER done well with any assessment or observation from an outside party.  She knows when she is expected to “perform”…and she always does just what she does.  She answers when she wants to, digs her heels in when she doesn’t want to do it, gets antsy and edgy.  I’ve seen “resistant” and “strong-willed” and “non-compliant” come on reports many times.  Strangely enough, if you actually know S, you’ll know she wants so bad to please you.  (which is why she’s said to be a great therapy kid.  She loves the rewards, the praise, the confidence.  

The low percentages glared at me.  Really stood out.  I kept telling myself, “don’t get fixated on it.  It’s just a score.  Look at the bigger picture.”  I try.  I do. And for the most part, I definitely think that I can’t get stuck on numbers.  Yes, they indicate a weakness.  But the reports come back with strengths, too.  I joked at one point that with all the progress she has made, if they gave her those tests 6 months ago, would she have been in the negative range????  But I do go back and look and think…damn…my bubble is broken, again.  And I’m back to square one.   On one hand, what did I expect?  There had to be lower scores,  or else S wouldn’t need therapies.  But then I wonder how far are we looking ahead?  Where is the end?  There is no light at any of these tunnels, so how do we navigate this path?  It’s a spiral I can’t allow myself go down.  My husband and I are her advocates.  How can we help her if we let ourselves be consumed by sadness, depression, or so helplessness?  So we buck up and make ourselves look ahead.

I guess the point is this.  Scores have to be noticed.  You can’t ignore them.  But they don’t tell you everything.   I have to really look at the whole child and what she brings to the table, strengths and weaknesses together.  I have to look at her journey, her path.  And if I’m comparing her to other children…well….she has come from a completely different start point than some of her “typical” peers.  It’s an unfair comparison.  I have to compare where she has come from..3 months ago, 6 months ago, 1 year ago, 2 years ago.  Those milestones are vastly different.  And that’s what makes me so proud.  S has put in so much hard work, and even if these scores tell me she is so horribly low, nobody can take away from us just how far she has come.  No test, no person, nothing.