It is imperative to recognize that although children with Dup15q Syndrome share a diagnosis, their respective needs differ from child to child. Additionally, IEPs are always individualized. Consequently, it is difficult to adequately respond to all IEP questions in this binder. We are therefore providing you with some of our favorite resources to help you to learn to advocate for your child and to research specific IEP-related issues.
- Wrightslaw publishes two books every IEP family should read. They clearly lay out the IEP process and provide useful templates and approaches. From Emotions to Advocacy and All About IEPs.
- Wrightslaw also has a website (https://www.wrightslaw.com/) where you can search lots of topics. Because it is written by lawyers, the site can be dense and overwhelming but it is very useful. Wrightslaw also has a weekly email where they discuss a certain topic or development that you can sign up for.
- A Day In Our Shoes also has a website (https://adayinourshoes.com/) where you can search for specific questions about special education law. You can find well thought out and practical advice from a Dup15q mom and advocate. There is also a facebook page you can join to post any IEP-related question you have (up to one per day), and have experts and parents from around the country answer.
- Autism Speaks has an interactive IEP Guide. Here is the link to access it: https://www.autismspeaks.org/tool-kit/guide-individualized-education-programs-iep
- Dup15q Alliance Family Support Facebook page
- “Been there, done that!” Other Dup15q families have faced similar educational challenges. Your child needs an epilepsy plan at school too? You are deciding between an ABA preschool and an inclusion setting? Dealing with pronoun reversals? Ask questions on the family support facebook page.
- Sometimes watching and listening is easier than reading. Here is a great site by the Arc of New Jersey with archived webinars on relevant special education topics including getting an out of district placement, using assistive technology, early intervention and preschool, and transition to adult life. https://www.thearcfamilyinstitute.org/what_we_do/webinars/webinarsandpodcasts.html
- Don’t forget to check out the recorded presentations from the Dup15q Family Conference on our Alliance website. We’ve bottled up the expertise of scientists, doctors and educators about our kids on topics from epilepsy management to transition to adulthood.
- Submit questions that you’d like other parents with IEP experience to help you figure out. We can’t provide legal or medical advice, but we can share our experience as seasoned IEP parents and help you think through what to do.
- Local special education advocate or lawyer
- Sometimes your question is so specific and needs action. You may need to hire a special education advocate or lawyer to work with you on your child’s behalf.
- Every state has a Parent Training Center for Special Education, as well as a Protection and Advocacy Agency for Disability Rights.
- Networking in your area
- One of the most important sources of information are your contacts in your local community. It is so important to meet other disability parents and advocates in your city and school district. You will find out about great opportunities (e.g., music and language interventions, reputable ABA companies, sensory events at museums) and learn about programs and schools to explore further. Unfortunately, the local education agency never tells you ALL the options for your child–you need to find them out yourself.
- The autism community tends to have local listservs and Facebook pages that share a lot of resources, information, and support. Search and join a few. Or start your own!