Tripping Over My Words

My son’s IEP meeting was a couple of weeks ago and of all the things to zoom in on a single phrase from the Student's Strengths section is still dogging me.  For the most part our IEP meeting went very well.  I feel like we have appropriate expectations set in his goals.  There is good documentation of the accommodations and assistive technology he needs.  (We could use more specific interim objectives in place but we are getting there with that as well)  I followed my usual cookies and combat boots philosophy and only needed the cookies.  So all in all I should be ready to call it a win and move on but my mind keeps coming back to those six words. 

“Little Man blends in pretty well”

This is what Mr. X put in for my son’s strength in the present level of performance section.  He blends in pretty well.  It seems like such an innocuous phrase but in truth it is the only truly toxic thing in the whole 34 pages.  It's probably the most toxic thing he will run up against in his whole life.  Mr. X would be astonished to read that I am sure.  Maybe some of you are as well.  Mr. X, all my son’s teachers, like him.  One of Little Man’s strengths is that he is pretty darn charming and as long as you are respectful of his few quirks, a very laid back, “easy” child as well.  I can almost SEE Mr. X’s baffled expression were I to tell him how that single comment has been gnawing away at my brain and my heart for weeks.  And that is the only reason I have not said something about it.  Yet.  I just don’t know if I can find a way to say what is bothering me so that he (and the rest of the team) will see how corrosive it is versus just seeing me as a total whack job.

Those six words are the embodiment of a whole mindset that is perilously dangerous for my son.  They list as his strength the ability to “pass” for normal, to suppress what and who he is and seem, at a superficial level, like a standard issue individual.    This is corrosive to his well-being, to his soul, in so many ways that it’s almost impossible as I get deeper into this post to even write what I mean in a reasonable coherent fashion.  I can’t imagine trying to speak my way through it without coming across as a wildly emotional irrational mom, someone easily dismissed and unheeded.  But in many ways – this single issue is the foundation of my son’s well-being for all of his life.

Some folks would understand better why it upset me if the school had set “blending in” or “passing” as a specific goal.  Any one in a minority or marginalized group would instantly get what I am saying.  Setting the goal to seem “not disabled” would more clearly lay out the subtle message “being different / disabled is not ok - only being the same as everyone else is.”    One of the first things I ever read about how dangerous this is for folks like my son is still one of the best.  I wrote about it here.

But sadly even as a stated rather than implied goal would still leave a lot of people wondering what in the world I am going on and on about.  And I just can’t seem to find the words to explain.    I can't let it go either.  I just can't so I just keep chewing on it, on how to explain so people can hear.

Must See TV (ok videos really but it sounded good!)

Check out this video - hear people affected by FASD telling their own experience:

Living with FASD

Or this one with Alan Mountford and Diane Malbin talking about children with FASD and School

You Never Know Who has an Invisible Disability

Both are awesome.

World Enough & Time

I had something I intended to post but then I saw a mother write this:

“As a parent, an IEP is a sobering read.” 

And then this:

“It's tough when you've seen your beautiful kid grow and see so much positive but reading the IEP reminds you that they are flawed. “

And so now I am writing this instead.

Dear friend - remember that the IEP is part of a system that says you must do x by the time you are 18 to be “successful.”  Hopefully all the people in that IEP meeting with you today really care about your boy.  I believe all except a very few do care, passionately sometimes, about our children.  (No one goes into teaching for the money!) It’s not their fault that the system they work within defines success so narrowly.

You do not have to put him in that box though.  You don't have to SEE him from inside that box.  Your son is not “flawed.”   He is not blemished, damaged, defective, or unsound.   (And neither is mine.)

I don’t know why we are all so fast to judge one another as if we were finished products instead of seeing each other as works in progress, but we do.  He is only 13.  There is so much more living, growing, and changing ahead of him.

Keep looking at the beautiful, and the growth, and the possibilities. School may be done with him at 18 but you will still have plenty of room and time for him.  All of us parenting children that are outside the box will keep working on the world so it has room and time for him too.  

Update

Sorry - I have been neglectful.  Life has been piling up as it has a way of doing and Mama is sick.  I swear I have NO immune system at all any more.  So I have been struggling to just keep up with everything going on and not done much in the way of posting. 

I am working on a couple of things for this blog though and will try to get the energy together to start getting them up here.  One is a post on sleep issues and what things we have found to be helpful with Little Man.  for another - I have been rereading Diane Mablin's book Trying Differently Rather than Harder. 

I really like the book.  I find it useful in a number of ways and wanted to write sort of a combination of book review with the spin off thoughts her work has inspired in me.  One piece of advice I can give easily is if you do not have a copy of the book get one and read it.  If you already have - reread it fairly regularly.  I am always surprised at how I can find something new or often I really need just a reminder of certain things.

Oh yeah, one final thing before I collapse back into a sniffling hacking heap - the schools assessments came back and they have decided to classify Little Man as "Other Health Impaired" and "Speech and Language Delayed".  I think of the 14 categories they have to chose from that is probably the best fit they could find.  He remains qualified for special education services for the next three years based on this.  I am, as usual following one of these meetings, happy and sad.  Sad because it is necessary.  I am so deeply sorrowful that there is no "cure" for him that will make the extra support un-needed some day.  It can be an endless sticky pit if I let myself dwell there so I don't dwell.  No amount of positive thinking completely erases all shadows of that grief though. 

Of course, I am also very glad that there is official documentation of the support he needs.  I don't kid myself that just having that will ensure it is all be smooth sailing for the next three years.  I believe (almost all) of his current team are really talented dedicated professionals that care about Little Man's success.  I also believe that the criminal underfunding of our public education system means I will always have to push and insist and be that squeaky wheel so that he gets all that he needs - but having the paperwork in place to support that is one less hurdle.  And given how little energy I have at the moment I am very grateful that it all happened smoothly and with no fight this time. 

Satisfaction

From reading just this blog you may have the impression that I like conflict.  I sure write about plenty of it with Little Man's school.  The truth is I really hate it.  I get a stomach ache even thinking about confrontations.  I just won’t let that make me back down.  I’ll white knuckle my way through it when I think it’s important.   Getting mad helps me sometimes (and sometimes hurts) but even when my temper cools, I slog through it with a kind of grim determination. 

Tonight was our PTO board meeting at Little Man's school and grim determination is how I’d describe myself headed into that. I spent at least half the day dreading it since I knew that the letters I sent had been delivered yesterday and I would have to sit across the table from the principal  who flat out lied to me and who I had publically called out on it.  I was a little curious how he would handle it but mostly I was determined to stare him down - stomach cramps and nausea be damned.  If I let him walk on me now this school system will walk on me and worse fail Little Man for the next 12 years. 

He did not raise the issue during the meeting.  This is good because I’d have handed him his head for discussing things related to my son specifically with people who have no business being involved.  After the meeting though he asked to speak with me a moment.  To my surprise I received personal apology AND the written one I had requested.  To my further amazement he admitted in both that he was “less than forthright”.  I didn’t expect he would ever say he lied.  (OK, technically he didn’t but there aren’t too many ways to interpret “less than forthright”).  I expected he would tell me that he had sent the memo but some secretary forgot to get it the teachers’ boxes and I misunderstood him.  Or some other shift the blame strategy.   It definitely was not what I expected.  So – is it enough?

Well, it doesn’t get someone on the staff trained but honestly I think that is more important at the middle school and high school levels than it is now.   My request that there be such a person and the fact that I offered to pay for the training which they declined is officially on record.  Those I think are important points for the future.  I also feel like I made an important point, not just to the principle but to the school board and special ed department, overall.  I won’t be walked on, brushed off,  or ignored.  I will call them on bullsh** when that is what they are shoveling.   

I know I’ve mentioned my tendency toward the cynical before so you know I’ve had my thoughts about how sincere his apology was and how much was a show.   However, even if it was for show, we’ve both learned from the fact that he felt compelled to put one on that I can make him “perform”.   I accepted his apology.   We’ll see how it goes from here.

Baby Steps

The meeting yesterday went pretty well.  Long - about 2.5 hours but in the end I got most of what I wanted in the official IEP and the entire document is in the official notes.  I have heard from some others that they have been in IEP meetings that have gone 4 hours or longer over several days.  I'm grateful it did not have to go that long.  I was pleased that after the initial stunned stares at my "manifesto" the team actually read through it and made suggestions I had not even thought of. 

The one issue that has not been answered is why the training we offered to pay for was never offered to the actual teachers and why we were told it had been and they were not interested.  I'm not letting that go.  I'm working on a letter to ask those questions.  I intend to send it registered mail to the Principal, the director of special education for the district and the school board.  I will be asking for a written response.  Both of which will be going in my record book.

I'll post a copy of that once it goes out. 

Right now I'm putting the communication journal they have agreed to use together to go into Little Man's school bag.  I am most pleased about that I think.  It was such a huge help in his preschool days that I really wanted that going on. 

After that I'm trying to do a little self care.  I am dog sick and going to bed early!

Change that to Fire Breathing Dragon

The school sent home a proposed IEP in Little Man's back pack last night before the meeting today. 

I am SO MAD!  First of all I thought I was entitled to that two days in advance. Second - they have stripped down my son's supports to two days a week half hour group speech therapy and half hour a day resource teacher in the room. His only iep goals are that he will follow class room directions independently with only two prompts and increase his use of pragmatic language by the end of the year. 

No interm goals listed and no evaluation method listed.  No accomodations listed.

It made me mad enough to rewrite the entire damn thing.  My version is below - should be a hell of a meeting.

Present levels of Academic and Functional Performance

Student Strengths

Little Man loves to please people.  He enjoys helping others and particularly likes when he can be the “knowledgeable” party in an exchange.   He thrives with one on one attention.  He is very good at rote memorization and can often appear to know more than he comprehends by virtue of having memorized specific information in specific contexts.

Extensive use of social stories over the summer has allowed Little Man to interact more with peers in situations that specifically apply the language and skills practiced by rote. 

Little Man is highly imaginative in his play – however this trait is emphasized to the degree that he is often lost in his own world.

Little Man loves music and finds music and rhythm a strong aid to memory.

Students Area of Need

Little Man has issues with slow auditory processing and short term memory deficits.  This impacts his ability to work independently.   He needs slower than average delivery of auditory input, visual demonstration of directions as well as auditory input, and requires reminders (visual or auditory) to remember the next stages of a task.  Repetition and routine help with this issue.

Little Man required private speech and language therapy outside of the school both during the school year and over the summer in order to make improvements in his articulation abilities over the past year.  However he continues to present with errors which combined with his low speaking volume, lack of eye contact and inability to read social cues for when to speak impede his ability to communicate functionally.  Little Man does not use grammatically correct sentences and may have difficulty grasping the past and present as concepts which may hinder his use of the grammatical forms.  He is unable to use language to describe events in his day, stories he has heard, answer WH questions or to interact with his peers socially.

Little Man has been evaluated by both the XX Children’s center and Dr. BLAH BLAH and is estimated at about 3.5 years of age developmentally.  This dysmaturity along with sensory issues can create issues with self-regulation for Little Man.

Effects of Disability on School

Little Man is meeting grade level expectations after a full years prior exposure to the curriculum and extensive outside interventions but requires special education services to help him learn coping techniques for his sensory and neurodevelopmental deficits. 

Little Man’s continued speech difficulties, dysmaturity, and difficulty understanding social cues negatively impact his ability to interact with peers and adults throughout the school day and to access the general education curriculum without accommodation and supports.

Academic Performance

Little Man can recognize all 26 letters and their sounds in the specific school context.  He has trouble accessing that information in new or novel settings even after a year’s exposure to the information.  (For example – inability to name any letters on the eye chart at the physician’s office with corrective lenses on, inability to identify letter sounds in church school games, difficulty recognizing 3D representation of letters at gym)

Little Man has memorized a great deal of beginning reading material from his first year in Kindergarten and “reads” it fluently due to repetition at home and in school.  When presented with the same words in a completely new context he often struggles with them. 

Little Man’s grasp of numbers is spotty.  He can count up to 100 with assistance and a focusing task (racing cars along a table).  Without a focusing task that captures his interest, he varies from 40 to 60 in independent counting.  He performs much more strongly with any numeric task when physical concrete objects are involved. 

He has not been able to grasp the idea of pennies, nickels, dimes, quarters and their values for him one unit remains one unit even after extensive practice. 

Functional Performance

Little Man is currently not ready for toilet training for bowel movements.  He has poor muscle ability and low sensation reception.  He requires the use of pull ups during the day and may need to be changed if a bowel movement occurs.   His current goal in this area is to accurately identify the sensation of needing to go and notify an adult.  He should not be pressured to use the toilet if he does so. 

Little Man has improved his core muscle strength somewhat but still presents with low tone and still exhibits poor fine muscle control impacting his ability to write and draw.  He has difficulty accurately forming figures particularly those with diagonal components and also has difficulty exerting enough pressure for his writing to be visable.

IEP Annual Goals

Social Skill Area Goals

1. Little Man will increase social-emotional skills as measured by the benchmarks listed

below.

a. Little Man will identify various emotional states in others 4/5 opportunities to do so.

b. Little Man will state why a person might be feeling a particular emotion 4/5 opportunities to do so.

c. Little Man will identify various simple emotional states in self 4/5 opportunities to do so.

d. Little Man will state why he/she might be feeling a particular emotion 4/5 opportunities to do so.

e. Little Man will state what would be an appropriate response to a particular emotional state 4/5 opportunities to do so.

Speech and Language Goals

1. Little Man will increase social communication skills as measured by the benchmarks listed

below.

a. Little Man will initiate appropriate communicative interactions with others 4/5 opportunities to do so including establishment of eye contact and use of appropriate vocal volume.

b. Little Man will initiate varied appropriate topics with others 4/5 opportunities to do so.

c. Little Man will initiate communicative interactions with others by asking questions 4/5

opportunities to do so.

d. Little Man will engage in conversational turn-taking with others across 3-4 conversational turns, 4/5 opportunities to do so (topics initiated by self /others).

e. Little Man will call attention to communicative partner prior to communicating 4/5 opportunities to do so.

f. Little Man will ask questions of others regarding topics initiated by self or others to sustain

conversation for conversational turn-taking 4/5 opportunities to do so.

g. Little Man will identify and understand various non-verbal social communication behaviors (ie. Tone of voice, personal space, vocal volume, body orientation, facial expressions) by stating their implied meaning 4/5 opportunities to do so.

h. Little Man will spontaneously seek assistance/ ask for help/ seek additional information given visual prompts 4/5 opportunities to do so.

i. Little Man will spontaneously use a verbal or non-verbal message to indicate to the speaker that he needs additional “wait” time to process information editorially 4/5 opportunities to do so.

j. Little Man will identify breakdowns in communication and make appropriate adjustments 4/5

opportunities to do so.

2. Little Man will increase narrative discourse skills to objective criteria as measured by the

benchmarks listed below.

a. Little Man will state the main idea of the story, video or situation 4/5 opportunities to do so.

b. Little Man will relate information (ie. Past events, stories, situations, etc…) sequentially 4/5

opportunities to do so.

c. Little Man will identify what happened first, in the middle, and last regarding a previous read

story, past event, or situation.

Academic Behavior

1. Little Man will increase their ability to function appropriately within the school environment as measured by the benchmarks listed below.

a. Given both visual and verbal prompts, Little Man will participate in tasks/ activities to completion by exhibiting appropriate behaviors, 85% of the time.

b. Little Man will transition appropriately from tasks and activities and school environments 90% of the time given advance visual and verbal prompts.

c. Little Man will accept changes in routine/schedule by exhibiting appropriate behaviors given

visual and verbal cues 75 % of the time.

d. Little Man will follow classroom rules and directives given visual and verbal prompts 90% of the time.

e. Little Man will independently ask to “take a break” when experiencing self regulation issues given visual and verbal prompts 70% of the time.

Academic Skill Area Goals

1.       Little Man will answer who, what, where, why and when questions to 70% accuracy for both written materials or description of activites going on around him.

2.       Little Man will increase his/her functional math skills in the areas of time and money by demonstrating understanding of future and past independently with 80% accuracy and demonstrating understanding of pennies, nickels, dimes and quarters.

Accomodations

1.       Communication with Little Man by teachers will include:

Concrete and Specific Language
Avoid using vague terms like later, maybe, "why did you do that?”
Slower pace
If necessary for understanding, break tasks down into smaller steps
Use of gestures, modeling, and demonstrations with verbalization
Specifically engage attention visually, verbally, or physically

 

2.       Social Supports for Little Man will include:

Protect the child from bullying and teasing particularly around toileting
Create cooperative learning situations where Little Man can share his/her proficiencies
Practice on specific skills through natural activities with one peer
Practice on specific skills through natural activities with a few peers
Structured activities with set interaction patterns and roles
Focus on social process rather than end product
Specific teaching, rehearsal, practicing, and modeling in natural settings of the following skills:

turn-taking

complimenting

negotiating

responding

inviting

waiting
greeting

joining others

accepting answers of others
accepting success of others

taking the lead

following ideas of others
appropriate joking and teasing
 

3.       Environment and Routine

Provide a predictable environment
Minimize transitions
Offer consistent daily routine
Avoid surprises, prepare Little Man thoroughly and in advance for special activities, altered schedules, or other changes, regardless of how minimal
Talk Little Man through stressful situations or remove him/her from the stressful situation
Provide personal space in resource or other room for recovery from overstimulation
Reduce distractions and sensory overloads due to noise, vision
 

4.       Presentation of Material

Presented visually, kinesthetically, as well as auditory
Use established routines
Divide instruction into small, sequential steps provide visual reminders
Provide repeated opportunities to practice
Provide needed prompts and cues
 

5.      Self Management/Behavior
Provide reinforcement that is individualized, immediate, and concrete
Incorporate strengths and interests into daily plan
Avoid punitive measures that lower self esteem, increase anxiety, and are not understood like taking away set routines, free time, or exercise
Avoid disciplinary actions for behaviors that are part of his disability, i.e.:

avoidance of eye contact
talking to self
slow response time
repeating words or sounds
upset in crowds or with noise
anxious
perseverating on topic of interest
upset by change

6.       Communication with Parents

The school will use a communication journal provided by Little Man's parents to provide the following info at minimum 2x a week:

Date

Who is writing
The topics covered for the week
Children Little Man played / interacted with
Names of books read, copies of poems, sayings that he should be memorizing

Description of any behavioral issues including: trigger, behavior, consequence

A copy of Little Man's intervention schedule – days / times he has Speech, Resource, in class support  - will be provided to his parents

The school will allow Little Man's parents to attend at a minimum 2 of Little Man's interventions during the school year so that they may observe methods and incorporate them at home.  This should be scheduled at the mutual convenience of the parents and the school.

3.       Knowledgeable mentor / resource for Little Man

The school will provide at minimum one person with training in alcohol related neurodevelopmental disorders to work with Little Man.  Training for that resource will be provided at the schools expense since training offered by the parents at their expense was declined.

 

Yet Another F

We had Little Man's Triennial Review yesterday.   I took an advocate and my husband with me and since Little Man's occupational therapist, physical therapist, and the principal did not show we were only out numberd 5 to 3 instead of the usual 8 to 1 match up. 

They spent the first 15 minutes or so detailing how marvelously well Little Man has done in the first week and a half of school.  I replied with all of the hours of private academic and speech therapy we had provided him over the summer to support his ability to do well this year.  His general ed teacher did let slip that this miraculous performance of his has been during their "settling in" period and they have not begun any academic work yet.  Oh how I wish I had brought the voice recorder.  I am sure that comment will be left out of the written notes.  They also mentioned how much more mature he seems this year – not crying all the time.  Really?  I thought you told me last year he was doing fine during the day – no crying or upset like I reported at home?  Yeah that recorder is going to be a staple at all meetings from now on.

They informed us Little Man had aged out of the "developmentally delayed" category and had to be reclassified if he were to continue to receive services.  I countered with the fact that developmentally delayed covers children until they are seven and Little Man has just turned six yesterday.  At which point they had to admit that he "could" remain classed as is, but threatened dire circumstances if his reviews were not able to be completed on time next year.  I allowed that - if - they wanted to do the testing now and recategorize now - so long as that did not eliminate him from any services we would be willing but we needed to see what testing would be done and what results came back before we would allow recategorization.

So they told me they would be doing an IQ test.  That's it.  Well, being the anal over prepared person I am I just happened to have a two page handout based on Teresa Kellerman's work showing which evaluations are best suited to uncovering the particular domains effected for a child with FASD to give them.  I recommended they consider something like that because if they did not I'd be asking for an independent evaluation .  (Which is my right and which they have to pay for and which I will get done regardless.)

They then handed me the signature page for the notes from the meeting and for the consent to test.  That’s it – just the signature page.  As if!  I insisted on reading the entire document first.  And that the fact that they had declined to attend the training we offered to pay for be added to the notes.  Oh my, the hullaballoo that caused!!  “What training – they had not heard of any training. Who knew about this – why wasn’t I told, blah, blah, blah. “  That’s when I lost it. 

So the principle didn’t even offer it to the teachers involved?  Or they were throwing him under the bus because he wasn’t there and I insisted on documentation?  You know what I don’t even care what the real answer is.  I was just pissed beyond belief.   Which made me cry.  Which made me even more mad to be crying in front of them.

And I get to do this again next week.  Because we have to do his IEP review.  Although why we are doing that before we determine if he is “still eligible for services”  is something they could not explain.

Relationship Test

Yeah, yeah, I know you are not supposed to “test” relationships.   According to Psychology Today   testing only sets up roadblocks.  Well I say, phooey on psychology.*    I want to know just how committed my son’s school is to us.  So I’m testing them.  You know – the kind of “If you really love me you will…” test.  Actually, I have a series of tests planned.  **

First of all, I’ve offered to cover the cost of attendance for the person of the school's choice in a teleconference on teaching children with Fetal Alcohol Spectrum Disorder.  I’m not even asking them to put their money where their mouth is on this*** – just a ridiculously small chunk of time.   

Second, I’ve researched a number of grants the school could qualify for and requested time with the principal to review which he would like me to apply for on behalf of the school.  There are a mix of general education and special education grants there.  I’m really wondering which he’ll give the go ahead on. ****

Finally, and highest stakes, I am bringing a “special guest” to the upcoming IEP meeting for Little Man.   I’ve debated this one back and forth.  I attended a conference this summer where a professional Parent Advocate strongly recommended bringing both a legal representative (or advocate) AND a tape recorder to all IEP meetings.  She also recommended bringing goodies.  I’m going with the advocate and donuts.  I’m not quite ready to drag along a tape recorder.***** 

I’ll let you know how it goes.

*I really wanted to say something much ruder than phooey, but I’m working on self-censoring those words out of my speech since Little Man is still in the repeating everything stage.

** Of course I do.  Have a plan work the plan - its the key to understanding me every time.

*** It’s not like I’m expecting them to propose, or even move in together.  Heck, I’d barely equate this with going steady. 

**** Ok so this may look kind of unfair – along the lines of your kids asking you, “Which of us do you love best?”  The thing is there is a right answer – I love you all – i.e. apply for them all and just see what shakes out.

***** I’m not so sure I want a taped record of ME at these meetings.