Recent events in the Gulf Coast region have left countless families displaced and without basic resources. While the stress of this situation is difficult for all affected, those with mental health conditions have a uniquely challenging journey ahead, particularly if they have experienced disruptions in treatment.
This page is a work in progress…. Put together by many parents and professionals who understand autism and its many challenges. It will be edited and added to for the coming weeks. Visit the site often for new information. Thank you to all who shared your thoughts and your resource information. IF ANY WOULD LIKE TO ADD INFORMATION TO THIS PAGE CONTACT: Martha Kate Downey 817-283-4114
mk.downey@sbcglobal.net Feel free to print any or all of this document.
Things to consider during a crises:
- Allow extra listening time. Even time just spent holding a child or sitting with a distraught person can be of great help to the adult as well as to the child.
Consider sensory issues and food issues.
- Get them back on their medications if med availability became a problem during the crisis.
Get them back on the same diet, if possible (although crawdads may be a bit harder to get here!)
Many people with autism need an isolated place to be. Many are overwhelmed with people. If possible, locate a quiet "safe place" for the child to be alone. Show the child specifically where that place is and the procedure needed to allow use of the "safe place".
Behavior may be young child behavior, very likely the child will have regression immediately or after a new setting is found. Think about what helped them settle down at other times, especially when they were younger, i.e. behavior redirection, positive behavior reinforcement, a comfort item, structure, etc.
Check to see if they had glasses or other types of visual support.
Do not attempt to stop self-stimulating behavior. It maybe the very thing that is helping them remain un-aggressive, and helping them cope with the problems. (You may have to suggest appropriate places for them to use, however, depending on what the behavior is (Noise, etc.)
Be aware of the many new people they see and the new environment in which they are seeing those they know. Those who have face-blindness will be having major hurdles in crowds. (Prosopagnosia will be a BIG deal!)
Reach out to other survivors, and those who offer support or help.
If a child lost an element (blanket, toy, etc.) that provided comfort, help them find another to replace it. This is NOT the time to wean away from a comfort item.
Ask for 5 things that would make their child's life easier. (This will be a very specific list and may include items that the child uses to stem, i.e. a favorite toy, a favorite video, a soft blanket, rice-crispie bars and a mini-tramp, a night light, a pencil, etc.) These children are all so individual, these details could make all the difference in providing appropriate and helpful care for the child and the parents.
Due to the incredible differences in these kids, a list such as the one which follows would help the professionals deal with each child as needed. If possible a parent or family member should be asked to help the child complete the list.
- My favorite toy is _______. (deer, Pooh bear, pencil, trains, Woody & Jessie)
- I do not like ____________. (loud noises, bright lights, peanuts, strange people to touch me)
- _____________calms me down. (deep pressure, darkness, smiles & tickles, certain words)
- I can do ______________ by myself for 10 minutes. (read books, play with beads, watch a Disney movie)
- Be careful...if I get too excited or scared, I might __________________. (run, bite, scream, cry, throw things)
To learn more about the characteristics of a person with autism, visit this site: http://mkdowney.com/characteristics.html
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In response to the obstacles faced by the hurricane survivors, CHADD has compiled a list of strategies and resources relevant to the AD/HD community. Many who have autism may share many of the same challenges as those having Attention Deficit Disorders. (Be aware that those with autism may experience them in a more intense way.)
Children
- Pay attention. Certain behaviors such as, difficulty relating to peers, sleep problems, misbehavior, and bed-wetting, are not uncommon in children with Attention-Deficit/Hyperactivity Disorder. However, parents should also be aware that any new development of these behaviors could be associated with emotional trauma or anxiety. If this happens, consider contacting a professional.
- Encourage questions. Allow children to express their feelings and concerns. Offer answers that are age-appropriate and take into account the child’s maturity and development.
Set reasonable expectations. Temporary drops in school performance as the child adjusts can be quite common.
Know your child’s rights and work with the school to design a suitable education plan.
Develop routines. Predictability and structure have always been important for children with AD/HD, but can be particularly crucial to re-establishing a sense of security in their new surroundings. So, as much as possible try to restore some structure as soon as possible.
Ask for help. Recovering from a traumatic event is a process that takes time. Reach out to your community for helpful resources.
Adults
- Alleviate the stress. AD/HD alone can introduce a multitude of stressors. This compounded with the distress of a tragedy can be overwhelming.
Participate in memorials, engage in calming activities, and be attentive to your physical well-being.
Talk to someone. Find a support system. This may be friends, family, church, and/or local support groups. Many individuals with AD/HD are susceptible to depression, anxiety, low self-esteem, etc. Having an outlet for emotions is important to maintaining a positive outlook.
Re-establish a treatment plan. Look for doctors or mental health services in your area or contact a relief organization. For health insurance, you can also look to public assistance like Medicaid.
Arrange a new schedule. Adults with AD/HD also benefit from structure. Look to resume a practical schedule that can help reintroduce a sense of normalcy.
Resources for finding employment and other necessities can be found below.
Resources
- For Fort Worth/Dallas Texas area resources:
http://mkdowney.com/randl.html
- The Autism Society of Greater Tarrant County has a Resource Packet for those needing assistance regarding autism.
October 8th, 2005—ASGTC 2nd annual Open House at the Child Study Center 11:00 a.m. until 2:00 p.m.
ASGTC September newsletter more info about Katrina and disaster preparedness for families.
- Support groups relating directly to those with disabilities:
http://mkdowney.com/support.html
- In Tarrant County Texas refer people with mental retardation or autism to MHMRTC Intake number: is 817-569-4141 They are taking calls as well as walk-in crisis referrals. Currently providing respite service, service coordination, and community supports for those with autism and their families.
- In the Dallas/Fort Worth area contact Melissa Bartley (817-228-7416) cookie.1199@lwol.com for long term or short term respite. Registered as a care facility, serving children and adults with autism, and other developmental and physical disabilities.
Melissa and her husband are Home Missionaries for special needs ministry and live in Hurst, Texas. She charges per hour for short shifts and will decide according to needs for long shifts. She has been involved in Katrina relief and their home is registered for residential services and also provides services through local agencies.
- Tarrant County Texas refer people with mental retardation or autism to MHMRTC Intake number: is 817-569-4141 They are taking calls as well as walk-in crisis referrals. Currently providing respite service, service coordination, and community supports for those with autism and their families.
Unlocking Autism has funding to help with the meds & can Fed Ex sensory items. www.unlockingautism.org They also have frequent flyer miles available if they would want to relocate closer to family.
- The Connections Center in Houston also offered free child care for a limited number of kids.
http://www.connectionscenter.com/
National Alliance for Autism Research
Dallas - 972.960.NAAR. -
National number 1-888.777.NAAR.
www.naar.org
2005 North Texas Walk F.A.R. for NAAR on Saturday, September 24, 2005.
We will have our resource fair and lots of free fun and goodies for the entire family.
Carroll Brown Arnold, Texas Regional Sr. Director
National Alliance for Autism Research
Texas Regional Office
6380 LBJ Freeway, Suite 280
Dallas, Texas 75240
214.212.6408 cell
cbarnold@naar.org
Housing:
Peg Pickering, 662-509-0599, the mother of a child with autism, has arranged for emergency housing for children with autism and their families at Camp Yocona in Toccopola, MS. This Boy Scout camp can accommodate up to 350 people in cabins that sleep 8. Each group of 4-5 cabins has a bathhouse. A very large commercial kitchen and dining hall is also available and will be staffed by a cook specializing in Gluten and Casein free foods, as many children with autism are on restricted diets. It has a very large amount of refrigeration and freezer space. The camp will be available for a minimum of 5 weeks. It is located off of Highway 334.
Wendy Fournier, President
National Autism Association
Phone: 866-622-6733
Cell: 401-635-7523
wendy@nationalautism.org
Crisis Hotline
The Department of Health and Human Services offers a toll-free hotline for people in crisis due to Hurricane Katrina. By dialing 1-800-273-TALK (1-800-273-8255), callers will be connected to a network of local crisis centers across the country that are committed to crisis counseling. Callers to the hotline will receive counseling from trained staff at the closest certified crisis center in the network.
Campaign for the Mental Health Reform
Campaign for the mental health reform (PDF 171KB)
Education
- Children with AD/HD are potentially eligible for services under either IDEA or Section 504. If your child was previously getting assistance, speak with school administrators about resuming services. Additionally, the McKinney Vento Homeless Assistance Act obligates school districts to make accommodations for displaced or homeless students. For more information on Educational Rights go to: National Coalition for the Homeless - for info on McKinney Vento Act, and U.S. Department of Education guidance
http://www.nationalhomeless.org/reauthorization.html
National Law Center on Homelessness and Poverty Web page on education issues: http://www.nlchp.org/FA%5FEducation/
U. S. Department of Education Regional offices http://www.ed.gov/about/contacts/gen/regions.html
The Federally Funded Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) are located in each state to provide training and information to parents of infants, toddlers, children, and youth with disabilities and to professionals who work with children. http://www.taalliance.org/Centers/index.htm#nat
State Protection and Advocacy Agencies for Persons with Developmental Disabilities, Mental Illness and the Client Assistance Program. The Protection and Advocacy (P&A) system and Client Assistance Program (CAP) comprise the nationwide network of congressionally mandated, legally based disability rights agencies. http://napas.org/aboutus/0507PA_CAP.htm
State Coordinators for Homeless Education http://www.serve.org/nche/states/state_resources.php
Louisiana Department of Education http://www.doe.state.la.us/lde/index.html
Texas Homeless Education Office http://www.utdanacenter.org/theo/
Employment
U.S. Department of Labor Disaster Unemployment Assistance http://www.dol.gov/
Katrina Recovery Job Connection national resources for connecting displaced workers and employees http://www.vec.virginia.gov/vecportal/alert_main.cfm?outsideurl=www.jobsearch.org/KATRINAJOBS/
Texas Workforce Commission http://www.twc.state.tx.us/news/disaster_response.html
* Many State Vocational Rehabilitations Services have implemented programs for those residing in areas
affected by Katrina. Check your local directory for contact information.
Housing/Shelter
- Federal Emergency Management Agency (FEMA)
http://www.fema.gov/
Red Cross http://www.redcross.org/
U.S. Housing and Urban Development http://www.hud.gov/katrina/index.cfm/
Health Care
Mental Health Services Locator http://www.mentalhealth.samhsa.gov/databases/
National Alliance for the Mentally Ill (NAMI) has comprised an extensive list relevant to accessing resources for healthcare, food, shelter, mental health counseling, and support groups. http://www.nami.org/Template.cfm?Section=Hurricane_Katrina&Template=/ContentManagement/ContentDisplay.cfm&ContentID=26242&lstid=566
Prescription Assistance Affording medication can be especially challenging at this time. Many companies and organizations have existing patient assistance programs that may help.
- U.S. Department of Health & Human Services
http://www.mentalhealth.samhsa.gov/consumersurvivor/patientassistance.asp
National Resource Center on AD/HD Paying for Medications http://www.help4adhd.org/en/systems/insurance/medassist
Other Articles and Publications
American Academy of Child and Adolescent Psychiatry http://www.aacap.org/publications/DisasterResponse/Katrina/clinicians.htm
American Psychological Association Traumatic Stress in Natural Disasters
http://www.apapractice.org/apo/public/apa_hurricane_relief/apa_response_to_hurricane.html
National Child Traumatic Stress Network
http://www.nctsnet.org/nccts/nav.do?pid=hom_main
National Mental Health Information Center Center for Mental Health Services
http://store.mentalhealth.org/cmhs/EmergencyServices/pubs.aspx
National Association of School Psychologists
http://www.nasponline.org/NEAT/katrina.html
National Institute of Mental Health Coping with Traumatic Events
http://www.nimh.nih.gov/healthinformation/traumaticmenu.cfm
NYU Child Study Center
http://www.aboutourkids.org/aboutour/articles/katrina_main.html