pre-IEP meeting

Last week, I met S’s teacher to find out where she stood looking at next year.  I sent emails to the therapists at S’s school to get their input, too.  I needed to know what everyone’s recommendations were for the IEP next year, what services they were recommending, what kind of support, if S would need an aide in the classroom, etc.  It’s a process to make sure that your child gets what they will need.  The school budget in crisis, too, is not helping matters.

The meeting with Mrs. B was actually extremely positive.  S has been happy, and we have been seeing things click on lots of levels.  Mrs. B has been such a wonderful pillar in S’s life this year.  She brings about a structured, yet warm class.  When I hear her speak, I see myself saying similar things if I was the teacher.  So for me, obviously, I like her.  But seriously, she is level headed, thoughtful, and caring. I have no doubt that she 100% knows my child, and that she has her best interest at heart.  I think the class that Mrs. B has created has been such a positive experience for S.  She feels comfortable, well-liked, appreciated, looked after, challenged, supported.  All the things that you hope for.

Her writing, math, and reading skills have made great progress.  She’s writing so many things on her own.  Mrs. B tested her reading skills with some standardized test.  S scored a level 6.  Apparently, by June, the goal for Kindergarteners is level 2-3.  So the fluency of her reading is great.

The language piece is a huge factor that bring all her scores down.  To be able to explain math, explaining differences and similarities, patterns, explaining stories, reading comprehension, etc.  Everything that entails a large verbal piece is extremely difficult for S.  And that makes perfect sense.  Her language receptive skills are great.  She processes it and has so much knowledge up in her brain.  But the expressive piece, being able to communicate that to others is such a struggle for her.  It has come such a long way.  But I was struck as to how far it still needs to go.

I have always assumed that the expressive language delay was going to hurt S socially.  And it absolutely does.  She has friends, but her delay prohibits her to develop play and fun with other kids.  What she can do is limited because she just can’t keep up.  I had never really worried about S academically because she just sort of picked things up from watching, observing.  We never schooled her on letters and letter sounds, numbers, etc.  She just taught herself from watching Sesame Street and flipping through books.  She loves books.  Always has.  She developed those pieces herself.  But finding out that language is heavily embedded in the academics as she moves forward.  I just wasn’t prepared.  I realized how HARD this road is going to be.  Socially it’s hard.  Academically it will get harder.  The demands, based on language, is going to become more.  And it makes me worry again as to what S needs, where she needs to be, etc.

I’m happy with conference.  Really happy.  It shows me that we are all on the same page.  We are all looking at the same things in the same perspective.  S will continue speech and OT services next year…at least based on her therapists recommendations.  She will have in class support for reading, writing, and math.  They don’t want to pull her out, which means she can function in the mainstream classroom with her peers.  These are all good things.  My husband and I are really want her to have an aide in the classroom next year.  She doesn’t need a shadow, but she needs a shared aide.  With the long day next year, and all the changes, and the added expectations in first grade, S will need that support.  She will be looking for reassurances and positive reinforcement.  Her class size will be at least 20 per class.  1 classroom teacher is not going to be enough.  Mrs. B said that we needed to let our case manager know all of that at the IEP meeting.  I’m hoping he won’t give a hard time.

However, with the budget undecided, and funds not coming in, I know cuts are coming.  Aides are some of the easiest to eliminate.  Will S get that help?  How hard will we have to push?  How much does a case manager, who has seen S in the classroom maybe 3 times this year for short periods really going to be her advocate?

Oh, I hate this time of year with all the uncertainty, and needing to get ready to put a fight, in case we have to, not knowing if we really do or not….it’s exhausting!  We have a few more weeks! Will let you know how it all goes down!

social skills

So the next step in this crazy world of child therapies for us is social skills group.  A social worker leads a group of 2-3 kids and teach them….social skills.  Maintaining eye contact, taking turns, initiating conversation, maintaining conversation, ending a conversation properly, staying on topic are just a few to name.  S’s Semantic Pragmatic Language Disorder makes some of these things extremely difficult for her, affecting her playtime with friends.  Her teacher, neurologist, speech therapist, and even her occupational therapist all agreed that social skills was next on the list.  So I went and did my research, asked around, called around, and narrowed down my choices.

One social worker nearby is a Jed Baker trained therapist.  Jed Baker is one of the leading voices on social skills.  He has written a few books, and gives lectures on the necessity of social skills to children and his techniques.  He targets 70 different skills, and each week one is the focus.  So we went to see this woman, wondering how it was all going to turn out, especially in light of S’s anxieties from her evals and testing.  We skipped soccer thinking it would have been too much for S, and the timing was going to be tight.

S was cautious with everything but did okay for the first few minutes.  She loved that there were 5 or 6 huge pillows to lay on, a chest of games, and a locked treasure chest.  She really wanted to open it.  But she wasn’t allowed to until S and the SW had “talk time”.  It was interesting observing them because for once, we could really be passive.  We could see each sign she gave in distress.  S would tighten just a little more, become more restless, made less eye contact, and eventually just blew her lid.  She refused to answer questions, didn’t want to participate in any games, and wanted to leave.  She came off extremely anxious and defiant.  Then she started yelling and throwing a temper tantrum.  Oh boy.

Part of the problem was the SW just talked too much.  I mean that in a nice way.  Not nonsenical talk.  But talked way above S.  I’m positive she lost S in the first minute.  She was rattling off questions, kept reminding S to look at her, and trying to get any comments or ongoing conversation with S.  She is a nice lady, but not very warm.  There didn’t seem to be any drawing S in.  She clearly didn’t understand any of S’s issues, and wasn’t making her feel any comfortable.  If you can get S to feel comfortable, you can get her locked in.  But rapid fire questions is a lot like her other evals.  She is going to freeze.  S knows her communication problems, and gets anxious from her lack of confidence in that area and not knowing how to respond.

Anyway, the SW and I got a chance to speak alone, too.  She couldn’t get over how anxious S was.  She asked about medication and wondered why she wasn’t on anything.  She also believed that with the anxities and weak language skills, S couldn’t join any groups.  She would need to have 1-1 play therapy with the SW for awhile.  No way she would manage an hour either.  I asked if it was even worth having social skills work right now.  The SW said it would take a few sessions to really find out where S was on the whole scale.  Then she could let me know if it was worth it or not.

So now I’m left at a crossroads.  I’m not sure what’s the best thing to do.  I really believe that social skills is the next step.  She’s going to eventually lose her peers’ interest if she can’t learn some of these skills.  Yet if she doesnt’ have the language development yet, she’ll lose them anyway.  And that breaks my heart.  At each crossroads I’ve faced, even if it was going to be a difficult transition, I firmly believed in my decision.  I thought it was what was best for S.  Now, I just don’t know.  It’s not a huge, life altering decision.  But I feel like time is ticking away.  As much as things keep progressing, and S continues to make great strides, I can’t help but feel something is slipping away.  Maybe it’s letting go of these great friends we’ve both made this year, as PreK ends, and everyone goes on to their respective home schools.  Or projecting forward,  will she lonely and have trouble making friends with language or other difficulties?   I know I can’t keep the shield around my “baby” girl forever.  But this bubble I’ve been maintaining to keep her emotional safety is popping.  She’s more aware of her differences.  Other children have or will be picking up on it, too.  I am desperately looking for something positive to cling to, to lead me through these decisions, to ease my own anxieties, to make me a stronger advocate for my child.  I’m hoping people will read this and send some positivity my way.   Where do we go? and What do I need to do?

Navigating the system-part 2

So my review meeting…..

We started to discuss S’s IEP for next year.  The IEP is an official document that is needed when a child is in Special Education.  It outlines specific goals that are targeted for your child.  Speech related goals could be about articulation or understanding WH questions.  Academic goals could be on being more attentive in circle time.  But they are specific to your child only.  All the reports are written in it, all recommendations, helpful tips to the teacher, everything that your child should be receiving in school as part of their services.  

By the way, if anyone has a child that falls under any kind of Special Education, make sure you read up on your rights according to your state’s code.  It is unbelievable to me how many stories I hear of where the school is in DIRECT violation of that code.  They know it, and might be getting away with it because you don’t know it.  This is your child, and you are their biggest advocate.  Know your rights.  Period.

I was hoping S would have a 1-1 aide next year in K.  19-22 kids in her class, 1 teacher.  I just don’t see how she could make it in that kind of a situation.  Given the results of the reports, I wasn’t sure how they were going to deny her of that.  On the flip side, like every other school disctrict, ours is having some big budget cuts for next year.  Where are they cutting?  In special ed and 1-1 aides.  We argued it, and Ms. H wasn’t giving.  Mrs. M did step in and ask the questions we were really trying to get ask, and we heard Ms. H’s pursasion.  Mrs. M kept stepping in, letting us know why she thought S was going to be successful, what had to happen for next year’s teachers to help her, kept Ms. H on topic and relevant to us.  You could see, she really was S’s champion.  I felt abandoned by her recently when I heard of S’s distress from all the pull out testing.  But here she was, back in our corner.  The appreciation and love she has for my daughter shined through.  It was almost tangible.  Still brings tears to my eyes thinking that S will be moving on from this woman, from this amazing class of peers.  She made us feel we really have a shot next year, just when I was getting scared and overwhelmed.

We didn’t get the 1-1 aide, though.  S is getting a group aide, someone who will help 3 or 4 classified Kindergarteners that are clustered together.  It’s better than nothing.  I pushed as hard as I could without being over the top.  I still have to work with these people in the future.  I can’t burn my hand before I even get there.  

A few bumps, but we got most of the things that we had wanted.  I didn’t know what to expect from this meeting.  I didn’t know if they were going to tell me that S wasn’t ready for Kindergarten or not.  If she wasn’t ready, there is no place to put her next year.  She would have to move forward.  They are sending her forward, but said she is also Kindergarten ready in most aspects.    They gave us suggestions for the summer and next year.  I came out somewhat hopeful.  Drained, but hopeful.

We have an IEP meeting next.  We all go over the goals listed and what needs to be put in there.  I have my notes that I want in there going forward.  I’m not asking for too many more things.  Small things that were in my IEP this year.  I don’t necessarily see it being a problem for the next.  But I’m suddenly facing this long tunnel.  Well, not suddenly.  I’ve been looking into it for awhile.  But moving from a preschool program, and looking into the elementary school adminstration, the game is going to change.  The players will be different, too.  I’m not sure how to go about this.  I have a lot of support in friends who are going through it and who have been through it.  That helps.  But I’m still looking in the dark.  How long will we be going down this path?  I take it day by day, week by week, but years????  She’s to be classified for at least the next 3 years.  She can be re-evaluated, those are generally done every 3 years.  But what’s going to happen in those 3 years?  And equally importantly, what’s going to happen after those 3 years?  We’ve been handling S’s issues for the past couple of years, and now how many more years is this journey going to take us on?  How long will we be battling and working with the school sytem to get her the services she needs to succeed academically.  That’s not even touching on how she will succeed socially.  And you all know that once kids are hitting 3rd, 4th grade and above…it’s ALL about the social aspect.  The “game” keeps changing, the goals keep shifting.  I’m left wondering how long will we really be at this?  Elementary, middle, to high school?  and beyond?  I know we can’t really ask that, and I’ll drown in my own worries if I look at it that way.  But what if where we are right now, just entering elementary school, it’s the easiest of the steps that just get steeper as we get older with the higher expectations and demands?  Where does that leave all of 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.

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.