Parenting a child on the autism spectrum has unique challenges. My friends who have one or more children on the spectrum have shown me what true courage and perseverance look like. If you have a child with autism or autism-like symptoms, I hope that this article will provide some useful information for you. Many of the things I write will be similar to what I wrote in my most recent blog post about assisting a child with Down syndrome because many of the resources and issues overlap. Please feel free to comment with your own information, your comments, and/or your family’s story. We are all in this together (even if we often feel as though we are marooned alone).
A good starting point is Parent 2 Parent. I found Parent 2 Parent to be an excellent lifeline when I first moved here. Here is their phone number: 631-434-6196, ask for either Valerie. They will match you with a support parent to speak with on the phone. Also, they have excellent workshops and offer a wealth of information. Their office is in Hauppauge. Here is the state web site: http://parenttoparentnys.org. Wrightslaw is an excellent resource to guide you through the legal labyrinth: http://www.wrightslaw.com/info/ei.index.htm
If you haven’t already done so, you need to enlist a health care professional to serve as the hub of your wheel of autism health care. It could be your pediatrician or it may be a developmental pediatrician. It is a good idea to ask your favorite pediatrician for a name of a developmental behavioral pediatrician who has a specialty in autism. Two Long Island hospital centers with specialties in evaluating and treating autistic disorders are the Fay Lindner Center for Autism of North Shore Long Island Jewish Hospital http://www.northshorelij.com/NSLIJ/autism, and the Cody Center for Autism and Developmental Disabilities http://stonybrookneurosciences.org/The-Cody-Center.html.
If you have an infant or toddler with symptoms of autism, have your child evaluated for early intervention services. It is better to find out for sure than to delay essential intervention. Here is the New York State web site for information about early intervention: http://www.health.ny.gov/community/infants_children/early_intervention. Early intervention has been proven to make significant improvements in the lives of children with autism. Early interventions typically include physical therapy, occupational therapy, speech therapy, and developmental therapy. The services are either free or low cost. E.I. programs last from early infancy until age three. I personally have seen the difference that early intervention makes in children who need it. There are many older children on the spectrum who are now in regular schools integrated with typical children because they were given the help they needed when they were younger.
Nassau County has a telephone number to Early Intervention (EI) Program (516) 227-8661. Suffolk County Health Services telephone number is 631-853-3100. Autism Link has provided this list of Early Intervention specialists and programs: http://www.autismlink.com/services/index/state:NY/service_support_type_id:126.
For ages three and four, your school district must provide an evaluation of your child to determine if there is a need for therapeutic services relevant to learning and education including physical, occupational, and speech therapies. An initial evaluation is performed by specialists at your school district then an individualized education plan (IEP) is created by the Committee for Pre-School Special Education (CPSE) which is usually composed of a director of special education or a district psychologist, therapists, special educators and you the parents. Here is an online document that explains the process: http://www.p12.nysed.gov/specialed/publications/preschool/eval3-4yr803.pdf
Once your child turns five years old, then he/she gets reevaluated by the school district and a CSE (Committee for Special Education) is convened to develop an IEP for kindergarten and beyond. Therapies and procedures are discussed and goals are set and accommodations are established to help your child succeed in school. The school district must, by federal mandate, try to find a way to include your child within the district. However, if they do not have the personnel with expertise in educating someone who has your child’s disability, or if they determine that your child’s behavior is too disruptive for the district schools, they will send your child to an out of district school. By federal mandate, they must provide transportation.
Once your child reaches 21, the school district is no longer under any obligation to provide any services. Until then, here is a guide to special education policies for New York State: http://www.p12.nysed.gov/specialed/publications/policy/parentguide.htm.
As soon as possible, get an eligibility letter from New York State Office for People with Developmental Disabilities in order to qualify for services. This is a high priority item. That letter must be kept in a safe place and easily accessible. It will probably be needed for the rest of your child’s life. How do you get the letter? This online document explains: http://www.opwdd.ny.gov/opwdd_services_supports/eligibility/documents/eligibility_important_facts. Why is this letter useful? Well, many children and adults with autism often have mental and physical health care needs that can be expensive. If you are like most families, you are likely to need some help to pay for certain therapies and/or therapeutic programs that are not provided by the schools because they are not education specific. Also, your child may need Medicaid or other funding asistance.
Here are some helpful web sites:
- Long Island Family Support Services Advisory Council http://www.lifssac.com/index.html
- Wrightslaw (I cannot recommend this enough, essential information for any family dealing with special education): Wrightslaw is an excellent resource to guide you through the legal labyrinth: http://www.wrightslaw.com/info/ei.index.htm
- Long Island Developmental Disabilities Service Office List of Services that receive grants from New York State http://www.lifssac.com/resources/2012+GRANT+LIST+Feb+2012.pdf
- Autism Speaks http://www.autismspeaks.org/resource-guide-by-state?long_state_name=New York&field_resource_state_value=NY
- Nassau Suffolk Services for Autism http://www.nssa.net/index.html
- New York Families for Autistic Children http://nyfac.org/
- Autism Link http://www.autismlink.com/locations/view/126
- The Autism/PDD Support Network http://www.autism-pdd.net/about-us.html.
- The Age of Autism daily web newspaper: http://www.ageofautism.com/2008/09/long-island-ny.html
- Organization for Autism Research http://www.researchautism.org/family/index.asp
- Asperger and High Functioning Autism Association New York http://www.ahany.org/
- The Global and Regional Asperger’s Syndrome Partnership http://grasp.org/page/new-york-spectrum-resources
- The Elija Foundation and The Elija School in Levittown: http://www.elija.org/foundation/about/
- ACDS http://acds.org Not just for Down Syndrome, many children with Autism receive services… I personally can vouch for the excellence of this program. Services run from cradle to grave, all encompassing.
- Life’s Worc http://lifesworc.org/index.html
- Developmental Disabilities Institute http://ddiny.org/
- Eden II Genesis School for Children with Autism http://eden2.org/
- The Hagedorn Little Village School http://www.littlevillage.org/index_files/Page1077.htm
- Centers for Disease Control and Prevention http://www.cdc.gov/ncbddd/actearly/index.html
- First Signs https://www.firstsigns.org/index.html
- Interactive Autism Network http://www.iancommunity.org/
- Temple Grandin’s web site: http://www.templegrandin.com/
This list is not complete. It is just a beginning. Please add your own favorite
services and comments. Don't go on this journey alone. Reach out. There is lots of help available for you and your family.