ABCs of the Special Needs Community

If you have any ABCs of Special Needs to add... feel free to comment below and I'll add them in! :)

- A -

ABA: Applied Behavioral Analysis

ABC: Antecedent-Behavior-Consequence (a method of tracking targeted behaviors)

ABI: Adaptive Behavior Inventory

ADD: Attention Deficit Disorder

ADHD: Attention Deficit Hyperactivity Disorder

AIT: Auditory Integration Therapy

APD: Auditory Processing Disorder, also referred to as CAPD or Central Auditory Processing Disorder

APE: Adaptive Physical Education

ARD: Admission, Review, Dismissal (used in Texas)

AS: Asperger's Syndrome (a high-functioning form of Autism)

ASD: Autistic Spectrum Disorder

- B -

BD: Behavioral Disorder

BD/ED: Behavior Disordered / Emotionally Disturbed

BIP: Behavior Intervention Plan

BOE: Board of Education

BP: Bi-Polar (formerly called "manic-depressive")

- C -

CAPD: Central Auditory Processing Disorder, also referred to as APD, see above

CD: Conduct Disorder

CNS: Central Nervous System

CP: Cerebral Palsy

CSE: Committee for Special Education (called "MDT" in some states)

CSPD: Comprehensive System for Personnel Development

CST: Child Study Team (also called Child Find Team)

- D -

DAS: Differential Abilities Scales (an early childhood educational eval)

DD: Developmental Disabilities

Dx: Diagnosis

DOE: Department of Education

DS: Down Syndome

- E -

ECSE: Early Childhood Special Education

ED: Emotionally Disturbed

EI: Early Intervention

EPSDT: Early Periodic Screening Diagnosis and Treatment

ESE: Exceptional Student Education

ESEA: Elementary & Secondary Education Act

ESL: English as a Second Language

ESY: Extended School Year

- F -

FAPE: Free Appropriate Public Education

FAS: Fetal Alcohol Syndrome

FBA: Functional Behavior Anaylsis

FERPA: Federal Educational Rights and Privacy Act

FOIA: Freedom Of Information Act

- G -

GAF: Global Assessment of Functioning scale (used in psychiatric evals to state level of functioning)

- H -

HFA: High Functioning Autism (such as Asperger's Syndrome)

HoH: Hard of Hearing

- I -

IDEA: Individuals with Disabilities Education Act

IEE: Independent Educational Evaluation

IEP: Individualized Education Plan

- J -

- K -

- L -

LD: Learning Disability

LEA: Local Education Agency (the school district)

LFA: Low-Functioning Autism (defined as autism occurring with mental retardation, e.g. w/ IQ lower than 70)

LLD: Language-based Learning Disability

LRE: Least Restrictive Environment

- M -

M-D: Manic Depression (now referred to as Bipolar)

MBD: Minimum Brain Dysfunction (what ADD/ADHD used to be referred to as)

MDO: Major Depressive Disorder

MDT: Multi-Disciplinary Team

MH: Multiple Handicapped

MH: Mental Health

MPD: Multiple Personality Disorder

MR: Mental Retardation, IQ < 70

- N -

NAMI: National Association for the Mentally Ill

NICHCY: National Information Center for Children and Youth with Disabilities

NIH: National Institute for Health

NOS: Not Otherwise Specified, usually seen as PDD-NOS

NLD or NVLD: Non-Verbal Learning Disability

- O -

OCD: Obsessive-Compulsive Disorder

OCR: Office of Civil Rights

ODD: Oppositional-Defiant Disorder

OHI: Other Health Impaired

OSEP: Office of Special Education Programs (located Washington, DC)

OSERS: Office of Special Education and Rehabilitative Services

OT: Occupational Therapist

OT: Occupational Therapy

- P -

P&A: Protection & Advocacy

PDD: Pervasive Developmental Disorder (a form of Autism)

PDR: Physician's Desk Reference

PET: Positron Emission Tomography (Brain scan that can be used for diagnosis of Neurologically-based disorders)

PIQ: Performance IQ

PLEP: Present Levels of Educational Performance

PLOP: Present Levels of Performance

POHI: Physically or Otherwise Health Impaired

PT: Physical Therapist

PT: Physical Therapy

PTI: Parent Training and Information center

PTSD: Post Traumatic Stress Disorder

- Q -

- R -

Rx: Prescription

- S -

SD: School District

SEA: State Education Agency

SED: Severe Emotional Disorder

SED: Severely Emotionally Disturbed

SID: Sensory Integration Dysfunction, also referred to as SI, or DSI

SIB: Self-Injurious Behavior

SIPT: Sensory Integration and Praxis Text

SLP: Speech-Language Pathologist

Sped: Special Education

SSRI: Selective Serotonin Reuptake Inhibitors (class of meds, incl. Prozac, Zoloft, Praxil, Luvox)

- T -

TEACCH: Treatment and Education of Autistic and Related Communication Disorders

TS: Tourette's Syndrome

TSS: Therapeutic Support Staff

- U -

- V -

VIQ: Verbal IQ

- W -

WAIS: Wechsler Adult Intelligence Scale (an IQ test)

WISC: Wechsler Intelligence Scale for Children (an IQ test)

W-J-R: Woodcock-Johnson Revised (a psycho-educational test)

- X -

- Y -

- Z -

How a stare or an unkind word can hurt further than you can see....

It constantly amazes me at how the world as I know it, is unkind and not made for my special guy. While both of my guys struggle with their difficulties, Ashton just can't pass as "normal" like Holden can and does. Despite Holden's ADHD/anxiety, his meds keep most of his symptoms at bay so for all intents and purposes, he's a completely typical 9-year-old and appears that way. Ok, so well... a small 9-year old ;) He is after all, only 50lbs and 51in tall.

If you see me and my son in the store..... here's what I hope you will not do.

First off, when you see me have him climb into a shopping cart, don't look at me weird. I do this, because Ashton can and does sometimes run. In a place like Walmart or Target where I do a lot of shopping, I need him to be contained. Yes, I know.... he's big (120lbs and nearly 5 foot tall) and looks goofy sitting in the back, but live a day in my life of having to chase him down and I can bet you won't judge me anymore.

**TIP**
Lifting the front part of the cart (where a small child would sit) up from the inside of the cart
will  allow a larger child to climb in instead of having to lift them
into the cart (which I cannot do with Ashton's size)

Secondly, when he flaps and claps ... don't stare. Can you even begin to imagine how this makes him feel? It's his way of processing the sensory overload that he's experiencing. Imagine the sounds, sights and smells of a place like Walmart and magnify it, 100x. That's how he feels! I can guarantee you'd have to do something to help your body calm down. Also, don't assume he's doing it because he's mad or upset, he does indeed flap and clap when he's happy and overly excited too. The vocalizations are different. People (generally) seem to find happy noises more acceptable than upset/angry noises.

Third, if you see or (as the case will usually be) hear him screaming, don't rush to the conclusion that he is some horrible kid that can't control his behavior, or that I'm just enjoying hearing him scream and making you miserable. While yes, he is autistic and he has difficulties with communication and behavior, he still needs to learn to fit into this world. He does very well, most times. But well, we all have our bad days and well, I do the best I can to keep him from screaming and yelling and carrying on. However, sometimes it's just not possible. I do have to get groceries, pick up prescriptions, and get out of the house; just like everybody else. My son also needs to learn these life skills too, he's almost a teenager! Just remember, if you feel miserable because his screaming is bothering you, think about how him and I feel. I do my best to quickly leave the store (and have done so without my purchases too).

Lastly, if you see my son behaving oddly and aren't sure what to say..... don't stare, give weird looks and turn away.

What I hope you will do ......
If you don't know what to say..... just nod your head with a friendly smile, and walk away. However, if you're wanting to make a positive social interaction with my son, speak up and say "Hello, Young Man!" He loves positive interaction and will typically answer back with a "Hello, my name's Ashton!" He gets so excited for positive communications from people. If you see him melting down and screaming and crying, please ask me if I need any help. Don't feel badly if I say no, however. I most times can handle the crying and screaming and do my best to quickly remove my son and myself from the scene. Please know that I sincerely appreciate every kind look, every kind word, or even just moving out of my way if you see me running with a cart and a kid. I hate the stares, so don't. I hate the unkind words, leave them unspoken. But I do appreciate sensitivity. I appreciate kindness. I appreciate understanding. I also appreciate people who can look beyond the situation and notice that this is a child with special needs. I appreciate people who know and can spread awareness.


This post came to light today because I read this note, someone posted on Facebook: A Few Feet, and a World Apart. It spoke to me, and made me feel like maybe I need to get out into the open how sometimes the looks, stares and unkind words that I get out in public, make me feel. I am most certainly not the only one out there. I've copied it below for those that can't read it due to not being on Facebook. Thank you to Kristina for the permission to use this :) You Rock Girl!

I will feel better if I get this off my chest, even though I know the people who will read this are not the people to whom it is addressed...

You and I stand just a few feet, and a world apart.

You are the old lady in the restaurant who gave me a stern look, then elbowed her friends, so they could also stare at my daughter. You shook your heads in open disapproval. In your world, children aren't born 3 and a half months early, and they don't have life threatening strokes, therefore they have absolutely no excuse to be using a bottle at 4 years old. In my world, the fact that my daughter can take anything by mouth is both a miracle, and the result of years of painstaking effort.

You are the irritable man at the Science Center who gave my children a blatant look of disgust when they had trouble staying in their seat during your presentation. In your world, parents are expected to control their children in public, and children have no excuse to behave that way. In my world, my children have ADHD and autism, which makes sitting still very difficult for them, even when they are on medication and are really trying to behave. 

You are the lady in the mall who rolled her eyes at me because my daughter was making too much noise. In your world, parents should teach their children to use their "inside voice." In my world, the fact that my daughter can make any vocalizations at all is really amazing. Her left vocal cord is paralyzed from nerve damaged caused by a chest surgery which was done when she weighed less than 2 pounds. In my world, not all children are capable of understanding the concept of an "inside voice."

You are the neighbor who notices with dismay that my yard doesn't look quite as manicured as it once did. In your world, there is time and energy to put in to things like that. In my world, I am too exhausted to care much about the yard anymore. I have bigger concerns that consume my days and nights, important things like trying to teach my 4 year old how to communicate her basic needs.

-

You are the fair weather friends I once had, the ones who simply evaporated while I struggled for months to cope with having a critically ill child. In your world, friends are only worth having if they are always fun to be around, and aren't likely to need anything from you. In my world, friends don't need to be asked. They can see you need help, and are quick to offer it.

You are the checkout lady in the grocery store who said to me, "I am SO glad that isn't my kid," not realizing that it was my own son you were commenting to me about. He was having a meltdown, and my husband was taking him out of the store, while I checked out as quickly as I possibly could. In your world, children with special needs are a curse. You pity them, rather than value them as people. With your eyes, you see only their deficits. In my world, special needs children are a blessing beyond measure. They teach us invaluable lessons in gratitude, patience, faith, and the value of life. With my eyes, I can see the miracles you sadly fail to see.   

You are all the people who smugly pass judgment on us. I know most of you do so without knowing all the facts. I realize you measure our behaviors by the only rules that you know, the rules that govern your world. You can not know how deeply your thoughtless responses cut. On most days, I extend to you a courtesy you fail to give us. I silently pardon, and excuse your behavior. Because you do not live in my world, I know you can not begin to fathom how hard my children work to try to meet the expectations of your world, and that they are doing the best they can despite their challenges.

I both forgive, and sometimes envy you for your ignorance. 

...and so ends the rant....with my apologies.

_

To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents "Loving a Miracle - Special Parents Supporting Each Other."

https://www.facebook.com/groups/325329864348?ap=1

If the link fails to work you can copy, and past it to your browser.

- Kristina Smith Blizzard

Have a nice day!

I happened upon this blog post yesterday

It was titled Dear School Personnel, Community Members and Neighbors. I happened upon it from a friend's Facebook page who had linked to it. I have copied it in it's entirity here as it was written by Marianne, from The Life Unexpected: Raising a Special Needs Child. I plan to send this to my son's last year school teacher and will send it to his teacher in the fall as well as to any of the administrators that will deal with him on a day to day basis. It very poignantly describes what every person who knows a special needs child, or will come in contact with a special needs child should know. If you choose to copy this letter or blog post, please give credit to the ORIGINAL WRITER, as I have done above. Thank you!

To Whom it May Concern,

I am the parent of a special needs child.  I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics.  Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee.  Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children.  The growth did not come without much pain and many tears but it came.

So I ask you, please

The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind.  Give a smile of recognition for what that parent is going through.  Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations.  Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included.  Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome.  When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of  their disorders or the obsession with perfectionism.  The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them.  They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits.  Take a minute before that call and know that they appreciate all you do and want  a collaborative  relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child.  Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period.  Consider working with  guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law.  Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities.  Understand that educating a child with special needs is one of the most difficult tasks a parent can face,  know that the last thing they want is an adversarial relationship.  Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions.  Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello.  Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel.  Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences.  Take the time to talk  about compassion, acceptance and special needs. Please remember that your child learns from you.  Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits.  Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting.  Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the word mental illness, take out the “mental” and remember  ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children.  Take the time to know us.

Have a nice day!