Thursday, September 27, 2012

Mazel Tov

I need to start buying cigars.  Oh and call CNN.  Little Man is apparently pregnant.  He has been walking around for the last three days inviting everyone to feel the baby in his tummy.  I have no idea what had brought on this burst of fertility.  He does have 2 baby cousins but since they are 10 and 7 months old it seems a little late for that to be the driver.  I’m not aware of any other pregnant woman he may be seeing.  Since he seems to give birth on average twice a day I probably should also be stocking up on diapers and formula.  Unless he reverts to wanting me to breast feed all his babies.  When his cousins were first born that was his obsession.  He would walk up and shove stuffed animals down the front of my shirt because they were hungry.  As long as he doesn’t start that again I’m cool with all his offspring.  Hey – just think of the dependents I’ll have to claim on next year’s taxes!!


But seriously, the dysmaturity that comes along with FASD is not always a problem.  Sometimes, like Little Man’s latest pretend play, it is a delightfully funny surprise.  Sometimes it is piercingly sweet, like the way he still loves to rock and sing and cuddle every night before bed.  It can make my heart almost stutter in my chest when I hear him give a rolling belly laugh of the kind kids seem to lose somewhere between toddlerhood and school age.  And it swamps me in a tidal wave of love when he melts into my arms, tears clinging to his lashes, comforted just because Mama kissed it better.
I saw a rainbow on the way home from work the other night and it immediately brought to mind that trite old phrase – you can’t have rainbows without the rain.  As much as I hate the sticky sentimentality of clich├ęs, I have to admit there is some tiny grain of real truth stuck in all that syrup.  I may mourn what Little Man could have been without the prenatal alcohol exposure but I love who he is now and FASD is a part of him.  I would not wish the pain and problems he will experience from this disability on anyone but I wouldn't change him either.  I will just celebrate every sweet, wild, sensitive, restless, frustrating, amazing bit of him just like I drank in the shimmering beauty of those surprise colors. 

Monday, September 24, 2012

Parenting Kids with FASD is like

Adrienne at https://www.facebook.com/fasdfamilies asked for folks to fill in that phrase.  Wow what a question!!!  I have been trying to work on a post about what it is like to be a caregiver for a child with FASD and not gotten very far.  I am usually pretty articulate.  I'm the person in meetings at work that tosses off an idea or a line and has others saying "slow down I want to use that."  But not when talking about this.

I wonder sometimes why that is.  Is it the sheer exhaustion that ties my tongue in knots, or how fervently I care about it all, or some days I secretly wonder if FASD isn't contagious.  I know my though processing, my memory, my impulse control are all so much worse some days than others.   Taking a step back from trying to explain it all and just finish the sentence I came up with these:

Parenting Kids with FASD is like...

Swimming in a blender.
Riding a roller coaster that never ends.

Being the only sane person locked in an asylum with a lunatic in charge.
Jogging through knee deep peanut butter.
Rollerskating down (and back up) the hills of San Francisco during an ice storm.
Training cats.

Trying to learn how to land a plane before the fuel runs out, from someone who only speaks Mandarin with controls all labeled in Cyrillic. 
Living the very best and the very worst day of your life at exactly the same time – over and over again - every day.
I'm still not satisfied that I've nailed it but there you go - it gives you an idea.

Friday, September 21, 2012

Test Time, Part two

Continuing on with the on line course that SAMHSA (Substance Abuse and Mental Health Services Administration) offers here are a sample of questions from the next three units. 
Identify from the list below the signs and symptoms of an FASD in a child between 6 and 11 years old.  Select all that apply.
A.    Speech and language deficits, particularly with comprehension, social communication, and pragmatic aspects of speech
B.    Tendency to be led by others
C.    Problems with boundaries (e.g., inappropriate touching)
D.    Truancy
Identify from the list below three secondary disabilities among individuals with an FASD (age 12+).  Select all that apply.
A.    Memory problems
B.    Stealing
C.    Failure to understand ownership
D.    Lying
E.     Destructive behavior
 

You can learn more about FASD Signs and Symptoms here 

Identify which of the following are accepted prevention strategies.
A.    Universal prevention strategies are usually prevention messages in reading material or media that are aimed at reducing or stopping drinking during pregnancy.
B.    Selective prevention strategies include screening and motivational interviewing
C.    Indicated prevention strategies for women at risk include identification of risk factors, identification of FASD in women, intensive case management, “aftercare” programs, and programs that combine intervention and contraceptive use.
D.    All of the above
Identify the five P’s of prevention from the list below.
A.    Public education, programs and services, prenatal information, proven assessments, professional training
B.    Public policy, professional training, public education, programs and services, parent and citizen activism
C.    Public prevention, programs and services, public policy, police intervention, professional training
D.    Programs and services, parent and citizen activism, professional training, public education, psychiatric education
FASD Prevention is covered in this section.  And-
Identify three barriers to diagnosing fetal alcohol spectrum disorders from the list below
A.    Lack of a physical test
B.    Few practitioners qualified to diagnose
C.    Lack of sibling history
D.    Features related to an FASD are harder to recognize in adolescents and adults
E.    Unavailable paternal history
Identify an effective strategy for the home, school, and work environment in the treatment of FASD.
A.    Therapy and medication as needed
B.    Daily routines and structured activities with predictable choices
C.    Skills training
D.    All of the above


the last two questions come from the section I had been waiting for Diagnosis and Treatment of FASD. Except I was disappointed.  I didn't really learn anything there I didn't already know.  It is a good site for the very basics - but WHERE is the advanced material on this!!!  I keep thinking it must exist somewhere.  I never find it though.

 

 

 

Wednesday, September 19, 2012

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.

Tuesday, September 18, 2012

Test Time, Part one

If you've found your way to this blog chances are pretty high you are already familiar with FASD in some way, but how much do you really know?  I found an on line course that SAMHSA (Substance Abuse and Mental Health Services Administration) offers complete with pre and post tests.  I'm going to reproduce some of the pretest questions from each section over the next couple of posts.

Identify when there was a known connection between alcohol use during pregnancy and subsequent fetal harm.
A.      Identified in a 1946 article in the Journal of the American Medical Association.
B.      Identified in a 1946 article in the Journal of the American Medical Association and in a 1968 study by Dr. Paul Lemoine.
C.      Identified in a 1973 study by Drs. David Smith and Kenneth Jones and the 1946 article in the Journal of the American Medical Association.
D.      Identified in a 1973 study by Drs. David Smith and Kenneth Jones, a 1968 study by Dr. Paul Lemoine, and a 1981 report by the Surgeon General
E.       All of the Above

Identify two studies that had a significant impact on the field of FASD. Select all that apply.
A.      A 1973 study in which Drs. Jones and Smith identified specific patterns of malformations, growth deficiencies, and central nervous system defects and coined the term “fetal alcohol syndrome”.
B.      A 1995 study on fetal alcohol syndrome and the neurobehavioral effects of prenatal alcohol exposure
C.      A 1996 study on secondary disabilities by Dr. Ann Streissguth funded by CDC
D.      A 2004 study on pregnancy and alcohol consumption
Want to try your knowledge against more questions like these two or just learn more?  Follow the link to the module about Historic Perspectives on Alcohol and Pregnancy.  I did not know all the background info they had here.  The most important point to me though, is how LONG we've known about this issue and how very little we have learned about how to help those effected.

I'll bet every parent or person caring for someone with FASD can answer these questinos from the next module:

Identify sign(s) of alcohol-related neurodevelopmental disorder.
A.    Sleep disturbances
B.     Attention deficits
C.     Sensitivity to noise
D.    Difficulties with attachments
E.     All of the above
Alcohol-related brain damage may be indicated by the following conditions or behaviors:
A.    Mental retardation
B.     Problems with cause and effect
C.     Poor impulse control
D.    Hyperactivity
E.     All of the above
But if you want to try your knowledge against more questions like these two or just learn more then follow the link to the module about Effects of Alcohol on the Fetus.

Organ systems are most vulnerable to damage by alcohol during the period of most dynamic development. Based on animal models, this most likely occurs during:
A.    Weeks 2-7
B.     Weeks 3-8
C.     Weeks 2-5
D.    Weeks 3-9
Identify the correct statement that lists risk factors for FASD.
A.    Maternal drinking patterns, fraternal drinking patterns, maternal lifestyle factors, such as nutrition and parity, and timing of alcohol consumption during pregnancy
B.     Maternal drinking patterns, genetic susceptibility, maternal lifestyle factors, such as nutrition and parity, fraternal drinking patterns, and timing of alcohol consumption during pregnancy
C.     Maternal drinking patterns, genetic susceptibility, maternal lifestyle factors, such as nutrition and parity, maternal absorption and metabolism of alcohol, and timing of alcohol consumption during pregnancy
D.    Maternal drinking patterns, maternal smoking, extended periods of sleeplessness during pregnancy, and maternal absorption and metabolism of alcohol Binge drinking (drinking 4 four or more drinks in 1 sitting) about 2 hours) has the same effect on the developing fetus as having 1 one drink per day for 4 days.
You can find more questions like these two or learn more in the module about Risk Factors for FASD

I'm not sure I learned anything in these first three modules that directly helps me help Little Man.  But I did pick up facts and stats that have helped when dealing with his school and knowing how to talk their  "lingo" has helped me with doctors that I need to interface with.  So it has helped me advocate for him more effectively and that makes it worth knowing for me.

Saturday, September 15, 2012

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

Thursday, September 13, 2012

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!

Wednesday, September 12, 2012

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.