Second Warning Shot

So - here is the general text of the letter I am sending to the principal of Little Man's school.  I'm copying the Director of Special Education in the district and the Superintendent of the School Board.  Let me know if you have any thoughts - it probably won't get mailed until Monday evening.

Dear Mr. Principal,

As you are aware my husband and I offered to pay for attendance by one staff member from your school to a seminar regarding FASD and learning.  The offer was made the week before school began.  After about a week you informed me verbally that no one from the staff was interested in attending, indicating that they were too busy with other activities.  In our tri annual review meeting with the staff that work most closely with our son, my husband asked why no one had been interested in the opportunity.  All members present at the time were surprised to hear that we had made the offer.  Not one was even aware that the opportunity had been presented to the school.  We voiced rather extreme surprise at this and several staff members offered to go back and review their e-mail and other memos to be sure information about our offer had not been sent and overlooked.  At the IEP review meeting all members confirmed that they had checked and found no record of our offer being communicated to them.

We are very distressed and frankly confused.  We are well aware, as is all of the county, about how tight the school budgets are and cannot understand why an offer for continued teacher development would be ignored when it is offered free of charge to the school.  The seminar we proposed to pay for was offered outside of school hours so it would pose no interference with the staffs normal duties.  I provided you with ample information regarding the presenter, Diane Malbin, and even a cursory google check of her name would have confirmed that she is a nationally recognized expert in her field.    (see http://www.nofas.org/fasd-hall-of-fame/diane-malbin/)

Children affected by alcohol in utero are NOT a rare occasion. Each year in the United States, by the most conservative estimates,  40,000 babies are born with FASD.  (Centers for Disease Control and Prevention, 2010).  Recent in-school studies suggest that cases of FASD among live births in the U.S., previously reported as approximately 9 per 1,000 (Sampson et al., 1997) could, in reality, be closer to 50 per 1,000 (May, 2009). In addition, recent retrospective analyses of hospital admissions data indicate that under-reporting of alcohol misuse or harm by women may further disguise true prevalence rates (Morleo et al., 2011). 

We know that the people working with our son are devoted to the education of children, that they do the work they do because they care.  We believe that had they known about the opportunity we were offering there would have been at least one willing to attend the training offered.  We would like an explanation, please, for why the offer we made was not relayed to the staff.  I personally would also like an explanation for why I was told the offer had been relayed and was declined when clearly that was not the case.  We would appreciate the courtesy of a written response on these two questions.

Sincerely,
Little Man's Parents

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.

 

Baited Breath

So tomorrow is the IEP meeting - to discuss his services - even though his evaluations will not be complete.  The cynical cerebral part of me can't wait - it ought to be a real farce.  The desperately emotionally involved mother in me dreads it.  Why can't they see how important this is?  Duh - because they are clueless. 

80% of people with FASD, Fetal Alcohol Spectrum Disorders, cannot keep a job without on-going support regardless of age. 70% will be confined sometime in their life for mental health reasons, alcohol and drug rehab, or for committing a crime caused by FASD’s effect on impulse control. 60% of people with FASD will not finish high school. And over 50 % will have at least one suicide attempt in their lifetime.   Remember all this applies to MY BABY!!

 One of the key factors for positive life outcomes for children with FASD is positive school experiences and healthy peer relationships.  So while I know it seems like I am being totally overwrought about my son’s kindergarten experience – I’m probably not.  It does really matter that much.  Not each and every second is critical – but the sum of his experience, the tone it sets for his school experiences overall, his ability to connect with his peers in some meaningful way,  oh yeah it matters. 

A Day Late and A Dollar (or a couple million) Short

I missed posting this on FASD day but check it out anyway.  It's worth a look no matter what day it is.

I'm working on an idea for how to raise funds for FASD that works on Awareness as more than prevention.  On Awareness as acceptance.  Awarness as research into what interventions help children with FASD develop to their full potential.  Awareness as providing the accomodations and supports they need for their disability.  Be afraid - I may ask YOU to help!

Did you even know that September 9th is FASD awareness day - be honest - did you?

Does this count as a "Guest Post"?

Today's post is blatant plagiarism.  Wait, is it still plagiarism if you acknowledge the author and get their permission?  I guess not.  Adrienne is the one that found this article and noticed the connection.  She said everything perfectly in her comments so I don’t really need to do more than just share what she wrote:

·         "Meanwhile, parents are often wracked by guilt, wondering what they did (or didn't) do that caused their child's _____.... In such an environment, it's no wonder that our research into __________is designed to prevent it.

I stand with a group of ________adults and their allies who believe that the best way to support _________people is to accept them, encourage their strengths, and work with them to find ways to mitigate their disabilities. And I don't see how I can support acceptance and also support research that seeks prevention."

This quote is from an article about autism and the constant search to find a cure. If you take out AUTISM and add in FASD to the blanks, you will see exactly where FASD awareness and prevention efforts are focused right now, and why I think it's time to move forward from there.

The only known effective "treatment" for FASD is parent and caregiver training and support, where caregivers are educated that this is a brain-based, permanent disability that impacts behavior. And by accommodating people with FASD and changing their environments so they are best set up for success we can help them develop at their own pace. ~Adrienne Bashista

Here's the link to the article, in case you're interested: http://www.huffingtonpost.com/todd-drezner/autism-research_b_1838150.html

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.