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IEP | Imprinting | International Angelman Syndrome Day | International Email Contacts & Websites | iPads

 

IEP

Use this link to the ASF IEP bank:
ASF IEP BANK/

The Individualized Education Plan (IEP) is the document developed for each child with a disability to address his or her specific needs. THIS IS THE MOST IMPORTANT DOCUMENT REGARDING YOUR CHILD’S EDUCATION. It tells you:

  • Why the child is receiving special education services;
  • What special education services the child will receive, how often they will occur, and where they will occur
  • What language and/or communication needs are to be addressed;
  • What related services are to be provided and where, how often and for how long they will be provided;
  • What long and short term goals the child will be working on;
  • What special equipment or assistive technology may be needed;
  • What behaviors may need to be addressed;
  • How the child will get to and from school (transportation, type of bus);
  • If and how a child will take part in general education classes.

In short, the IEP is the master plan for your child’s education.  When planning the IEP, here are some things to consider:

Present Levels of Educational Performance (PLEP): [can also be called Present Levels of Performance (PLOP) or Present Levels of Academic Performance (PLAP)] These sections describe the child’s current levels of performance in that domain area. Strong PLEPs should include both formal (standardized tests and rating scales) and informal data (observations, work samples, data taking during instruction, etc.) and include statements of the child’s strengths in that area as well as areas of weakness.

Long-Term and Short-Term Goals and Objectives: The goals in the IEP should be specific, clearly stated and above all they should be relevant to the child for whom they are written. Be watchful of “canned” or computer generated IEPs with unrealistic goals (for example: ‘child will state four rules for using a computer’ when the child is non-verbal). One of the mandates of the IDEA is that the annual or long-term goals be measurable. When developing the goals, it will be necessary to look at a child’s PLEP and determine what goals may be reasonably and realistically  achieved over the next  12 months. The short-term goals are the steps that must be mastered in order to achieve the long-term goals. These too must be measurable in order to determine progress. The long and short term goals should be directly derived from the deficits stated in the PLEP.

Progress Reports: The IEP should also reflect the manner and number of times parents will receive progress reports.

Behaviors That Interfere with Learning: For children whose behaviors interfere with their ability to learn, a behavioral intervention plan should be developed and made a part of the IEP. A “functional behavioral assessment” should be performed to determine why and when a behavior occurs. This assessment is then used to develop the behavioral intervention plan.

Participation in General Education Classes: The IEP must indicate if a child will participate in general education classes, as well as nonacademic (i.e. physical education, art, music) and extracurricular activities and if not, why not.

The IEP process can be confusing and overwhelming for new and even for more seasoned parents. Parents have the option to bring an advocate to the meeting. This advocate often has attended multiple IEP meetings, is familiar with the process, and is also familiar with special education laws and the dispute resolution process. Many times an advocate can think of other/different questions to ask or be there for support as the parents try to explain a thought/feeling.

It is wise for the parent(s) to come prepared to the meeting with questions/thoughts written down so that nothing is forgotten. Several weeks before the scheduled meeting parents should put a list on the fridge or counter and begin organizing their thoughts. Educating themselves about their rights, etc. is also highly advisable. Diplomacy and a sense of “I want to work cooperatively with the school to help my child progress and achieve” is a good philosophy.

Some parents almost feel that they have to go into the meeting in a confrontational manner, loaded with lots of power and ammunition! However, some parents of older children report regret about the past – they regret being angry, accusatory, unreasonable, etc. at meetings when it really wasn’t necessary. It is most effective to keep calm, expressing the love you have for your child and why you feel so strongly about certain issues.

In times of anger, try to ask yourself if it is possible that you might not have the “whole story.” Be open to explanations and other ideas, and work towards a compromise if possible. Safety, however, is something that should never be “compromised”, and if that is an issue, a quick and thorough resolution is justified. Often times parents of AS children need to work very hard to see that their child has a full time aide at school. Naturally, this is expensive and school districts often try to “get by” most economically. However, having an aide with the child all the time might be a necessary health/safety issue! It’s not always necessary to make threats, but it is necessary to clearly describe your concerns so that the district can be aware of your child’s special needs. One of the strongest ways to support your case during an IEP meeting is to have data and documentation! Keep track of behavioral incidents you’re aware of, academic work, data provided to you via progress reports, etc. Although your documentation may be mostly anecdotal, the more objective information you can provide to support your side the better.

Remember that the IEP is developed by a ‘team’ for a reason – just like it is not up to any one teacher to make a decision, it is not solely up to the parents to make a decision. Keep the focus on the child’s needs, not the district’s resources or your expectations as parents.

***Contributed by Michelle Harvey, ASF Family Resource Team Member:
IEP Issues, IEP Bank, Educational Issues, Advocacy

Michelle has a M.Ed. in Special Education (Severe/Comprehensive Disabilities) and Applied Behavior Analysis (ABA) in December 2013 at Vanderbilt University. She is currently teaching special education at an elementary school in the Williamson County School District in the Nashville area.

 

Keep the goals simple and work on one at a time.  Once one goal is gaining progress another can be added.
Donna Manhart Rowlett, TX angel Douglas Joseph Manhart, age 25

Public school districts are not always funded adequately to provide the support services that each child needs; therefore, you must be an advocate for your child.  Contact your state advocacy agency and ask them to come with you to IEP meetings.  Take family and other parents of children with disabilities in your area to meetings for support.  Never go alone to an IEP meeting because it can be a very emotional process and can often become overwhelming. When emotions are high you miss information that someone else could catch.  The squeaky wheel gets the grease! Don’t sign an IEP until the best interest of your child is met.  When school districts say (and they will) that your child doesn’t qualify for therapies, services, or special considerations; you need to remember that sometimes your child really does qualify. The school district just doesn’t always have the means to make it happen.
Anne Loveless

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Imprinting (See Causes of Angelman Syndrome and Development)

Imprinting defect (3% of Angelman Syndrome cases) These individuals may have a deletion of the imprinting center an Chromosome 15, but cases can also be caused by loss of imprinting information during the mother’s oogenesis. Loss of imprinting will prevent expression of the maternal UBE3A gene in the brain.

Example of Imprinting

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International Angelman Syndrome Day

International Angelman Day (IAD) is observed annually on the 15th of February to raise awareness worldwide for Angelman Syndrome. The date selected is in recognition of the 15th chromosome affected, and February is International Rare Disease month.

The purpose of this day is to:

  • Raise awareness worldwide of the condition
  • Mobilize people to action & encourage fundraising for the individual organization in their country
  • Promote research and educational resources in the organization’s own country
  • Remember those people with Angelman Syndrome who are no longer with us

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International Contacts & Websites

Argentina: Casa Angelman 
Email: Maria@casaangelman.org
Facebook: www.facebook.com/casaangelman/ 

Australia: Angelman Syndrome Association Australia
Email: wildkellie@gmail.com
Facebook: www.facebook.com/angelmanaustralia

Austria: Angelman Verein Osterreich
Email: info@angelman.at
Facebook: www.facebook.com/angelmanverein

Belgium: Belgische Angelman Syndroom Vereniging
Email: post@angelmansyndroom.be   Phone: +32 475 75 27 82
Facebook: www.facebook.com/Angelmansyndroom/?fref=nf

Brazil: Associacao Comunidade Sindrome de Angelman   
Email: contato@acsa.org.br 
Facebook: www.facebook.com/groups/160821717320

Brazil: Associacao Sindrome de Angelman
Email: contatoangelman@gmail.com

Canada: Canadian Angelman Syndrome Society (CASS)
Email: cass@davincibb.net
Facebook: www.facebook.com/casscharity1993

Canada (Quebec): Angelman Syndrome Foundation of Quebec
Email: info@angelman.ca
Facebook: www.facebook.com/Centre-de-r%C3%A9pit-Angelman-respite-center-Soci%C3%A9t%C3%A9-du-syndrome-dAngelman-162364910441918

Chile:  Familias Angelman Chile (No National Association)
Email: www.facebook.com/angelmanchile/?ref=page_internal

China (Hong Kong): Hong Kong Angelman Syndrome Foundation
Email: info@hkasf.org 
Facebook: www.facebook.com/HongKongAngelmanSyndromeFoundation/?hc_ref=SEARCH

Czech Republic (Slovakia): Civic Association of Parents and Friends of Children with Angelman Syndrome
Email: angelman@email.cz
Facebook: www.facebook.com/angelman.cz

Denmark: Angelmanforeningen i Danmark
Email: angelmanforeningen@gmail.com
Facebook: www.facebook.com/groups/22095118723

Eastern Europe: Angelman Syndrome Eastern European Group (No National Association)
Facebook: www.facebook.com/groups/341308909405684

Egypt: No National Association
Email: Amira Khalifa – akhalifa@idsc.net.eg

Finland: Suomen Angelman-yhdistys ry
Email: tuija.daivanto@angelman.fi

France:  Association Francophone du Syndrome d’Angelman (AFSA)
Email: lara.hermann@angelman-afsa.org
Facebook: www.facebook.com/syndrome.angelman.afsa

France: Syndrome Angelman France  
Facebook: www.facebook.com/Syndrome.Angelman.France

Germany:   Angelman e.V.
Email: Bodo.Gerlach@angelman.de
Facebook: www.facebook.com/Angelman.Elternverein

Guatemala: Angelman Guatemala
Facebook: www.facebook.com/GuateAngels

Hungary: Angelman Alapítvány
Email: angelmanalapitvany@gmail.com
Facebook: www.facebook.com/Magyar-Angelman-Szindr%C3%B3ma-Alap%C3%ADtv%C3%A1ny-Hungarian-Angelman-Syndrome-Foundation-483890115076958/?ref=profile

India: Angelman Syndrome India (No National Association)
Facebook: www.facebook.com/groups/asindia

Ireland: Angelman Syndrome Ireland     
Email: Sarah – admin@angelman.ie
Facebook: www.facebook.com/angelmansyndromeireland

Israel: Israeli Angelman Syndrome Association          
Email: Horim.angelman@gmail.com
Facebook: www.facebook.com/angelman.il?fref=ts   

Italy: Associazione Angelman
Email: associazioneangelman@gmail.com
Facebook: www.facebook.com/Associazione-Angelman-264454530297881

Italy: Sindrome De Angelman – Italia (No National Association)
Facebook: www.facebook.com/groups/17142459959 

Japan:  Angel No Kai (blog)  (No National Association)
Email: masako-m@ck9.so-net.ne.jp

Mexico: Sindrome de Angelman Mexico (No National Association)
Facebook: www.facebook.com/sindromengelmanmex

Netherlands: Angelman Syndroom Nederland
Email: info@angelmansyndroom.nl
Facebook: www.facebook.com/groups/141570629343929

Netherlands: Nina Foundation  
Facebook: www.facebook.com/NinaFoundationNL

New Zealand: The Angelman Network and The Angelman Network
Email: Ursula – angelmannetwork@gmail.com
Facebook: www.facebook.com/groups/104686089609200 and www.facebook.com/theangelmannetwork

Norway: Norsk Forening for Angelmans Syndrom  
Facebook: www.facebook.com/Norsk-Forening-for-Angelmans-Syndrom-120579744727860 

Philippines: Angelman Syndrome Philippines (No National Association)
Facebook: www.facebook.com/AngelmanPh

Poland: No National Association
Facebook: www.facebook.com/razem.m.wiecej

Portugal: Associacao de Sindrome de Angelman de Portugal   
Email: Geral@angel.pt
Facebook: www.facebook.com/AngelmanPT/?hc_ref=SEARCH&fref=nf

Portugal: Sindrome de Angelman – Portugal (No National Association)
Facebook: www.facebook.com/groups/angelman.portugal

South Africa: South African Angelman Syndrome Group (No National Association)
Facebook: https://www.facebook.com/groups/1533193256919383/

Spain: Asociación Síndrome de Angelman
Email: Joseba – info@angelman-asa.org
Facebook: www.facebook.com/ASA-ASOCIACION-SINDROME-DE-ANGELMAN-ESPA%C3%91A-119910304753295

Spain: Sindrome de Angelman  (No National Association)
Facebook: www.facebook.com/Sindrome-de-Angelman-114077169428 

Sweden:  Angelmans Syndrom Föräldrarförening (ASF) (No National Association)
Email: Annette – a.lack@telia.com
Facebook: www.facebook.com/groups/102087956542715

Switzerland: Angelman Verein Schweiz   
Email: Melanie – Club@angelman.ch
Facebook: www.facebook.com/AngelmanVereinSchweiz/?hc_ref=SEARCH

Switzerland: AngelSuisse  
Email: Sarina/Christopher – info@angelsuisse.ch
Facebook: www.facebook.com/groups/AngelSuisse

Turkey: Angelman Sendromu Türkiye (blog) (No National Association)
Facebook: www.facebook.com/groups/8766625618

United Kingdom: Angelman Syndrome Support, Education and Research Trust (ASSERT)  
Email: assert@angelmanuk.org
Facebook: www.facebook.com/ASSERTUK

Uruguay: National Association Angelman Syndrome (No National Association)
Facebook: www.facebook.com/SINDROME-DE-ANGELMAN-EN-URUGUAY-148648096949

Venezuela: Angel Foundation in Venezuela (No National Association)
Facebook: www.facebook.com/Fundaci%C3%B3n-Un-Angel-en-Venezuela-104776379607999 

Vietnam: Angelman Syndrome Vietnam (No National Association)
Facebook: www.facebook.com/AngelmanVietnam

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iPads

The iPad has opened many doors for my Angel. She is an amazing girl and the iPad makes her world bigger and more accessible. The iPad allows her to communicate with peers her own age because it is a device for which they can relate.
Neeli Renda

The Big Grips rubber “holder” for the iPad makes it indestructible and easy to hold. Our Angel loves watching the “Fraggle” episodes downloaded from iTunes. We are exploring various communication apps to see if any will work for our son.
Jeanne Seltzer

The iPad has been a godsend for our angel who is 18.  It opened up his world in school and at home.

The iPad has become the best piece of technology out there! I am amazed at how my son is able to use it!
Danielle and John Ridge  Waynesboro, PA  angel Alex  age 15 Del+

We use the iPad for entertainment and also as a communication device. We use free apps, Tap To Talk, or Proloque2Go. The iPad is cheaper than most augmentative communication devices. Our Angel is able to navigate between many apps to play games, watch videos and monitor social networks of friends and family members. She especially enjoys Instagram, which is a photo-sharing site. We take the iPad in the car and use it while waiting on appointments. It seems her attention span has increased when waiting for apps to load and between activities.
Pam Wilson

Our son loves his iPad.  He is able to change shows or rewatch portions of a show over and over.  We use it when we visit family so that he is comfortable in new places.
Kevin and Kathy Burns   Buffalo, New York   angel Brian, age 16 (mutation)

Our angels are very capable of learning technology.  Start basic and build as they show they have mastered a step. IPads are the best invention ever for our children.  Let them experiment with all the free apps.  Find the apps they enjoy and spend one on one time with them while taking turns and exploring.
Donna Manhart Rowlett, TX  angel Douglas Joseph Manhart, age 25

My son has an iPad that he received about six months ago. At first he did not do well with it. He would just turn it off and on, but now he can navigate to his favorite apps and pick his favorite songs and listen to them. He has come a long way and our goal is for him to use it to communicate with us in a way other than gestures and sign language. It took some patience but he is getting the hang of it. He is five years old and the sweetest boy.
Danielle Wynn

Jack’s iPad promises to be a great learning tool. I wish we had gotten him one sooner. We use TouchChat both for communication and for lessons at school and we use a modified version of Alphabet Therapy where we program the choices into the app instead of using flash cards.
Melissa Shipee Mansfield Center, CT  angel Jack,  age 8

An iPad has been a lifesaver for us!!  We made sure we put restrictions on it so he can’t order any apps or delete any, which we learned through experience!  He loves to go to Google and we type in things he likes (ex. Disney Parades) and he gets on Youtube and watches videos.  He has figured out things we didn’t!  Computers never worked for him because he couldn’t manipulate the mouse.  The iPad keeps his attention longer than any other activity.  It is something he can do without our help and something that he can chose what he wants to see/do.
Mary Pipal

The iPad has been a godsend for our angel who is 18.  It opened up his world in school and at home.
Joyce Flint

The Gripcase for iPad let my angel carry his iPad everywhere safely.
Janet and Rick Sutphin  Olathe, Kansas  angel Brittany, age 24

Using the iPad was the first time our angel concentrated for long periods of time.  She will sit for two to three hours at a time working on her iPad.
Bill and Paula Benton  Van Alstyne, Texas  angel Kathryn, age 31 

The iPad is how I get my twenty-one year old son to do everything. For example, I usually put the iPad in the restroom while he is bathing. This is for playing music or watching a movie.
Aina Abdullah  Fairfield, Ohio  angel Ra’Shawn Jarrett, Jr., age 21

This is the ASF link to Computer and Software Technology.
http://www.angelman.org/resources-education/aac-technology

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