Need input if your son has limited use of upper body

I am preparing my presentations for Chicago and need your valuable input. I am looking for QUESTIONS/PROBLEMS and NEEDS that folks may have regarding their son (or themselves with DMD) regarding Assistive Technology for the age group 15 years on up. I am not a technology expert therefore I'm not looking for specific questions as to how a piece of technology works. I am looking to start with the NEEDS young men in that age group have so we can present solutions to the most common issues. Perhaps, your sons aren't in the age group but still have limited use of arms or upper body, that helps too.

The most effective way to use AT is to find a need FIRST, then find a piece of technology or modification that can gets that need met. Most folks start with the gear and work backwards trying to fit a kool piece of technology into their lives or their day. This rarely works for a variety of reasons we can discuss in another post.

For now, please weigh in below with the most common problems, needs or dilemmas in this age group only. I will then be able to start posting resources, answers and prepare a USEFUL presentation for Chicago.

I need your help to make sure I'm helpful! I want to make this for YOU.

What are some examples of the "function" and intervention of behavior?

Behaviors can arise when the child is trying to obtain something through problem behavior. Here are a few examples of behavioral interventions.

• When the child seeks to obtain adult attention, feedback, or help:
 Directly teach routines and expectations for accessing the adult.
 Make sure tasks and activities match the child’s current ability.
 Directly teach steps for solving problems, in order to promote independence.

• When the child seeks to obtain peer attention or social interaction with peers:
 Directly teach relevant social interaction skills, practice in context, & give positive reinforcement when skills are used.
 Teach about accepting and including others, and review these expectations frequently.
 Teach words and strategies to use if others are trying to get their attention in an unwelcome way.

Behaviors can arise when the child is trying to escape or avoid something. Here are a few examples of behavioral interventions.

• When the child avoids situations, activities or work:
 Teach appropriate ways to ask for a break or activity change or ways to break down the task.

• When the child avoids unpleasant sensory or physiological sensations:
 Provide ear plugs or ear phones if needed to block out auditory stimulation.
 Give advance warning of fire alarms and loud noises.
 Let the child choose “time away” instead of escaping through problem behavior.
 Teach about diverse abilities/needs; promote acceptance of others.

In my private practice I teach parents and teachers the difference between "attention" and "connection". Many kids are trying to get "connection" and that is not as simple as attention. We are so busy and distracted as adults these days we unknowingly go days without really listening to our kids. Believe me, they end up doing all sorts of bizarre things to get us to be present with them.I can teach you how to use that "connection" time where you let them lead as a reward for them eliminating the undesired attention and before you know it, you are the reward and they are working for time with you in a productive, appropriate way. Call me for a consultation!

How do I address Behavior in the IEP?

Behavior is identified as how people act, function, and/or react in a particular situation. Children can have behaviors related to their disability that are considered inappropriate. When behaviors interfere with the child’s or others’ ability to learn, a functional behavioral assessment can be used to examine the behavior(s) and develop a behavior intervention plan to manage, replace, reduce or eliminate the behavior(s). Children can be taught appropriate behavior skills once behaviors are analyzed and understood.

Step One

Once an inappropriate behavior or behaviors, have been identified by the teacher, parent, or Individualized Education Program (IEP) Team, a functional behavioral assessment (FBA) can be conducted.

•When describing the behavior use descriptive words like kicking, hitting with hands, screaming, or throwing book.
•If there are multiple concerns it is important to prioritize which behavior should be targeted first.

Step Two

Begin gathering data about the behavior.

•When does it occur?
•Where does it occur?
•What happened immediately before and after the behavior?
•What happens after the behavior occurs?
•What has worked to prevent the behavior?
•What has worked to reduce the behavior?
•How do others, including adults, respond?

Step Three

The Team will analyze the information collected about the behavior.

•Is there a pattern of when or where the behaviors occur?
•Is there a consistent trigger to the behavior?
•What is reinforcing the behavior?
•What is the function of the behavior?

Function refers to a consequence that has reinforced or strengthened a behavior; it’s why a child continues to engage in the behavior. An event that occurs after a behavior and increases the chance that the behavior will occur again is a consequence. Not all conse- quences are negative corrective actions. Typically, the function of the behavior will fall in to one of two categories: either it helps the child gain something or it helps the child avoid something. It is very important to be accurate in identifying the function to prevent implementing an intervention that inadvertently makes the situation worse.

Step Four

The IEP Team then develops a behavior intervention plan (BIP) based on the conclusions drawn from the analyzed information. Behavior plans describe what adults will do to manage the behavior.

•Prevent – avoid or change the antecedents (triggers) so that the problem behavior is less likely to occur.
•Teach – a new behavior to replace the problem behavior. Replacement behaviors should serve the same function as the inappropriate behavior but, ideally, cannot be done at the same time as the targeted behavior.
•Extinguish – do not allow the problem behavior to be reinforced so that it weakens over time.
•Reinforce – the new replacement behavior so that it strengthens over time.

Step Five

Record data to monitor progress; there are a variety of forms available to document and track data to determine how well the plan is working. As new data is collected it may be necessary
for the IEP Team to modify the behavior intervention plan.

Where can I get a list of Free APPS?

Cool Timer – this helps for kids who need timers, etc stays on desktop



Natural Reader- text to speech reader



Tar Heel reader- accessible books



Bubble Organizer- free information & graphic organizer like Kidspiration



Help Kidz Learn – free games



Tumble Book- books that are read out loud w/pics



My study bar- keep kids on task



Eye jot- generates and sends video emails for those who can’t write



Pocket Mod- turns an 8X10 piece of paper into pocket size



Camera Mouse- mouse that works with head



Vocaroo- Voice messages for email

What are the Federal Laws for Service Animals?

Service Dogs Welcome!

Laws that protect the rights of people with disabilities who have service animals

The federal civil rights law, the American’s with Disabilities Act (ADA, Title III, 28 Code of Federal Regulations, sect. 36.104), defines a service animal as any animal that is individually trained to help a person with a disability (the disability might not be visible). By law, a service animal is not considered a pet. Most service animals are dogs; they can be any breed or size, and are not legally required to wear special equipment or tags. It is prohibited by law to require proof or “certification ”of the service dog’s training. Service animals can do mobility, hearing, guide, seizure alert, emotional support and other work needed by the person because of a disability.

Federal (e.g., ADA 28 CFR Sect. 38.302) and state laws protect the rights of individuals with disabilities to be accompanied by their trained service animals in taxis, buses, trains, stores, restaurants, doctors’ offices, schools, parks, housing and other public places. Federal laws which protect individuals with disabilities include the ADA; the Fair Housing Amendments Act (1988); Sect 504 of the Rehabilitation Act (1973); The Air Carrier Access Act (1986/90), and other regulations.

State and local laws* which protect the rights of individuals who have disabilities to be accompanied by their service animals are (fill in the code numbers of the laws that apply):

*NOTE: If federal and state or local law conflict, the law which is less restrictive for the individual with the disability will prevail. For example, if state law grants access only by service dogs that do guide work, and the service dog in question performs work other than guide work, federal law will apply. The person with the disability must be permitted access with the service dog.

The person who is accompanied by the service animal is responsible for its stewardship (behavior, care and well-being), must obey animal welfare laws (such as leash, cruelty or other similar regulations), and is liable for any damage done by the service animal.

About the ADA, contact the U.S. Department of Justice ADA Information Line 800-514-0301 (V); 800-514-0383 (TDD)

About state and local laws, contact the State Attorney General’s Office

How can I help my son with his writing?

Strategies:

• Extend time for assignments/tasks
• Reduce or use alternative assignments/tasks
• Adjust seating position (90" x 90" x 90")
• Peer "scribe" for note taking or dictation
• Seating needs (hearing,destractibility noise level, traffic pattern, front/back of room, near teacher or peers, etc.)
• Desk (wheelchair accessible, laptop, tilt, flip top desk, lip on side of desk, large table, study carrel, etc.)
• Reduce clutter on desk
• Allow word cards, spelling list, hints, etc.
• Allow alternative methods i.e. oral reports
• Do not penalize for misspellings, poor writing, or grammar
• Allow single word or short answers
• Give multiple choice tests
• Allow either printing or cursive
• Use checklists to help get started
• Teach and review test taking vocabulary
• Provide models of assignments/tests
• NCR paper for peer to provide notes
• Lighting adjustments (more, less, direction)
• Provide outline/lecture notes beforehand
• Spelling journals

Light Tech

• Pencil grips/holders
• Short pencil stub
• Pens with different grips
• Tape recorder
• Straps/splints for pencil
• “T” holder for pencil
• Chalk holder
• Writing frame
• Wrist weight/hold down
• Slantboard
• Dycem/other material to prevent slippage
• Name/number/date stamps
• Line indicators (raised line, with mid-line, etc.)
• Sections on paper (draw lines, fold, etc.)
• Type of paper (graph, textured, colored, etc.)
• Provide extra white space
• Highlight or color code
• Cover parts of worksheet
• Put less information on page
• High contrast colors
• “Post It” notes for “fill in the blank” tests
• Word cards, book, wall, or file
• Pocket dictionary/thesaurus
• Pencil/pen attached to desk
• Word/sentence windows
• Trace letters/numbers/words with highlighter
• Stencils to trace letters
• Tactile letters/words
• Pictures, drawings, photos, etc.
• Sentence strips
• 3” three-ring binder as slant board
• Spinner with parts of story

Higher-Tech

• Tape recorder with/without adapted controls
• Electronic/talking dictionary/thesaurus
• Digital tape recorder/Voice organizer
• Portable note-taker

Computers/Software

• Word processors/text output devices
• Spelling and grammar checker
• Keyguard (with reduced # of keys)
• Keyguard (for all keys)
• Alternative mouse and/or keyboard
• Accessibility options in Control Panel
• Screen/text reader
• Screen magnifier
• Enlarged or Braille key caps/labels/covers
• Screen flasher when sound is emitted
• Alternative methods to access keyboard (mouthsticks, headsticks, electronic)
• On-screen keyboard
• Touch window/screen
• Switch control (single or multiple)
• Utilities to enlarge the cursor, hold windows open, assist with click-and-drag, etc.
• Voice recognition
• Software strategies (word prediction, abbreviation expansion, etc.)
• Software for alternative output
• Software for screen magnification
• Interactive writing software
• Graphic organizers – Inspiration/Kidspiration
• Word processor forms feature
• Draw/paint software

Do I have to wait until my yearly IEP meeting to change things?

The answer is NO. Parents of boys receiving special education services are equal members of the Individualized Education Program (IEP) team. Occasionally, parents may have concerns regarding a specific aspect of their child's IEP and would like to request a meeting to review and/or revise the IEP. Examples of when it is appropriate to request an IEP meeting include but are not limited to:

• Your child has met one of several of his goals
• Your child is not making adequate progress towards one or several of his goals
• You have new information to share with the IEP team that may affect services
• You believe your child no longer needs the services they are receiving

The implementing regulations of the Individuals with Disabilities Act (IDEA) 2004 state that the IEP team should review the IEP periodically, but not less than annually, to determine whether the annual goals of a child are being achieved and revise the IEP, as appropriate, to address:

• Any lack of expected progress toward the annual goals
• Results of any reevaluations conducted
• Information about the child’s provided to, or by, the parents
• The child’s anticipated needs
• Other matters

Each state also has an administrative code that typically defines the timeline in which the school needs to respond to that parent with a date for review of the IEP with the appropriate school staff attending. Each state will be different but make sure you put the request in writing.

Please see my list of resources for a sample letter template to use.

What is the difference between an IEP & 504?

•Section 504 is a part of the Rehabilitation Act of 1973 that applies to persons with disabilities. Section 504 is a Civil Rights Act that protects the civil rights of a person.

•An IEP is part of the Individuals with Disabilities Education Act (IDEA) 2004 and it provides an Individualized Educational Program (IEP) for students who qualify for Special Education.

•To be eligible for a 504, the child must have a physical or cognitive impairment that substantially limits one or more of a person’s major life activities (caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning or working).

•To be eligible for an IEP, the child must meet the criteria for 1 of the 13 Disability categories AND have the need for specialized instruction.

•A 504 provides Accommodations and minimal services only to assure access to the curriculum and the benefits that typical students are able to access.

•An IEP is an Individualized Educational Program that provides goals, accommodations, modifications and related services.

•The chain of command for a 504 is first the 504 coordinator on campus (who is usually a vice principal or counselor), then the principal, the superintendent of the district, and finally the Civil Rights office Denver, Colorado (OCR).

•The chain of command for an IEP is first the child’s teacher, then the Special Education case manager, school psychologist, Special Education Director of the District and finally the Department of Education for the state you live in.

•Both meet once a year to review however, for both you can call a meeting anytime you feel adjustments need to be made.

•Both can work for boys with DMD depending on the person's type and level of needs.

Welcome to My New Blog!

As most of you know, I have been helping folks in the Phoenix area for years navigating special education and behavioral issues. My expertise is also in Duchenne as I have a 14 year old son with DMD. I get many calls each week from parents all over the country looking for education and behavioral supports for their boys. I have created this blog as a response to those calls. I will post ideas, free resources, and tips on a regular basis.

Please also note I am able to provide services in other states. I have been helping parents across the country by reviewing IEP’s and 504 accommodations, speaking to teachers and school psychologists for parents, recommending Assistive Technology and attending meetings via Skype. I will not charge you the full price I charge here since I can’t attend the meetings in person, but I’m excited to discover I can be pretty effective with the use of technology. However,if it gets complicated and you need someone there in person, I will recommend resources in your state as well.