Virginia Autism Council 4/22/2017 My Child Was Just Identified with an Autism Spectrum Disorder: Now What Do I Do? Ten Tips for Families Slide 4: Positive Profile Form Slide 5: Organization System Packet Slide 11: Medicaid Waiver Video -Welcome to all. Members of the VA Autism Council put together this session to support families who recently have received a diagnosis of autism or autism spectrum disorder, or Asperger Syndrome. -My name is ____________ and my background is ______________. I have supported families of children with autism for _______years. -Today we’ll be using the term “autism” as a general term, even though your child might have a diagnosis of “PDD” or Asperger Syndrome. Parent presents this section. She/he can add their family’s story as part of this. We’re going to share some suggestions from parents who have walked this path before you that may help you on your journey. ASD: Newly Identified 1

1. Give yourself time to grieve Virginia Autism Council 4/22/2017 1. Give yourself time to grieve Being sad that your hopes and dreams for your child's future may not be what you envisioned is normal and natural. It is o.k. to feel sad. Do whatever helps to work through the sadness - talk, journal, cry, exercise, pray. You will go through cycles of grief as your child reaches various childhood milestones that he may not experience in the same way that his typical peers or brothers and sisters do. The sadness may surprise you after having reached a place of acceptance with autism. Let yourself feel it; be gentle with yourself for however long it takes to pass.   Being sad and feeling chronically depressed are different. Depression will immobilize you; seek treatment if you feel that you are experiencing clinical depression. Some signs of clinical depression would include not eating or eating compulsively; uncontrollable crying; not being able to sleep or sleeping too much; feelings of hopelessness; inability to concentrate.   ASD: Newly Identified

Virginia Autism Council 4/22/2017 .   2. Dream new dreams for your child Celebrate the successes! Most children with autism who receive appropriate early interventions do get better.   Remember that this little person is a child first. Make a list of his strengths. As with any child, he is unique and has gifts to bring to your family and his community. You are your child's greatest advocate and champion; he is counting on you to help others see his strengths and inner light while accessing education and treatment for areas of challenge. ASD: Newly Identified

Virginia Autism Council 4/22/2017 Positive Profile Strengths Interests Needs A positive profile describes the strengths, interests and needs of your child. It can be a useful tool as you interact with others, including professionals. It can act as an introduction. You can give people who work with or support your child the positive profile to fill out and compile the results to make the final profile. For example, the early childhood teacher, speech therapist, grandparent, and sibling! Let’s take a few seconds to talk about some of your child’s strengths. Have a couple of parents provide a description of his/her child outlining the child’s strengths. Participant is to show the blank Positive Profile and to go through the example of a Positive Profile. (Reference profile example in handout packet.) Develop a positive profile of your child when you get home. Participants are to complete a positive profile between today and day 2 of this training and to return with it. On day 2, parents share the positive profile. ASD: Newly Identified

Positive Profile Please download the handouts from the website titled “Positive Profile – Eric”

Positive Profile Who is ____________? What are ___________'s strengths? What are ___________'s successes? What are ___________'s greatest challenges? What supports are needed for ___________? 6. What are our dreams for ___________? 7. Other helpful information. (Describe your child, including information such as place in family, personality, likes and dislikes.) (Highlight all areas in which your child does well, including educational and social environments.) 3. (List all successes, no matter how small.) 4. (List the areas in which your child has the greatest difficulties.) 5(List supports that will help your child achieve his/her potential.) 6 (Describe your vision for your child's future, including both short-term and long-term goals.) 7. (List any pertinent information, including healthcare needs, not detailed elsewhere on the form.)  

Positive Profile - Eric, Age 6   1. Who is Eric? oldest child; Susan's brother likes to help in the yard (digging, raking, etc.) loves dinosaurs and trains favorite channel is the Discovery Channel favorite color is blue likes to sing likes to take pictures, like his dad. likes to visit the library to look at books  

Positive Profile - Eric, Age 6 2. What are Eric's strengths? is persistent in learning about things of interest is helpful w/ routine tasks (e.g. setting the table, feeding the dog) very neat and organized with his DVDs can learn a fact if it is put to music remembers names of people understands what is being said

Positive Profile - Eric, Age 6 3. What are Eric's successes? belongs to children's choir at church voted "most helpful" by his peers learned to ride his bike is getting better at sharing is very good at operating a computer can dress himself is learning to read

Positive Profile - Eric, Age 6 4. What are Eric's greatest challenges?   can't communicate clearly dislikes unexpected change is hypersensitive to sound and touch is reluctant to do things on demand has difficulty with fine motor tasks such as handwriting

Positive Profile - Eric, Age 6 5. What supports are needed for Eric? opportunities to observe and learn from 'typical' children a circle of friends for support routines that are structured, yet flexible to allow for increased tolerance to change a curriculum which can be modified use of assistive technology (i.e., computer), to expand ability to communicate increased opportunities to be included in community activities

Positive Profile - Eric, Age 6 6. What are our dreams for Eric? have a circle of friends in his neighborhood learn to read and write expand his ability to communicate

3. Create a system for organization Virginia Autism Council 4/22/2017 3. Create a system for organization Assessments School records Service providers Medical records Data collection The amount of paperwork and correspondence can be overwhelming if you do not have a system of organization. Create a system that works for you – files, notebooks, computer files, etc. will help you to better support the needs of your child with autism. Set aside time once a week to organize all information gathered on your child for that week. Pass out organization system packet. Go through the organization system slowly. Discuss each section and outline components that would be included in each section. Other examples of systems that parents find helpful can be found in: Autism Speaks’ First 100 Days Kit (http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf: Section 8: Useful Forms) The First Year: Autism Spectrum Disorders by Nancy D Wiseman ASD: Newly Identified

Document Management System Please download the handouts from the website titled “Document Management System Table of Contents” “Service Providers” “Intervention Log” “Medical Appointments Log” “Medication Log” “Daily Notes”

Virginia Autism Council 4/22/2017 4. Take time for yourself, your partner, and your other children The journey you have begun is a marathon, not a sprint. Remember in an airplane how parents are told to put the oxygen on themselves before their children? When you have a young child with autism, it is hard sometimes to make time for yourself to enjoy life's smallest pleasures. Do it for your child. Your child cannot afford for you to "burn out".   If you do not schedule time to take a break from the duties of parenting a child with ASD, it will not happen. Put it on your calendar: Time to be alone - to read a magazine, to paint your nails, to watch a movie. Time to be alone with your partner. Time alone with each of your other children. ASD: Newly Identified

Virginia Autism Council 4/22/2017 5. Find a local support group for parents of children with autism – and go! You're not alone. Other parents are walking this path. There is no one who can share the challenges and triumphs of living 24/7 with a child with autism like another parent of a child with autism! You can learn much from other parents - about doctors, childcare, teachers, recreational activities, and other resources in your community. Often parents have struggled with many of the same issues that you have and figured out creative ways to address them - you don't have to re-invent the wheel! If you are unable to make it to a support group, find an online group in your area. Connecting with other parents will provide you with resources about which you may not be aware. ASD: Newly Identified

Virginia Autism Council 4/22/2017 6. When someone asks to help, let them There are many ways that friends, neighbors, and relatives can help. When someone offers to help, accept their assistance in whatever form it comes! If they ask what they can do to help, have a mental list of suggestions ready! Can they: Make a meal? Run an errand? Mow the grass? Play w/ your other child? You may not feel comfortable leaving your child with a friend or relative at first. If this is the case, have them spend time with you and your child until you (and they) find a comfort level. Nothing will help folks learn about how to be with your child like having you model what works.   You may have people in your circle who would be happy to watch your child while you are still “on site”; this would allow you to spend time with another child, take a bath/shower, take a nap, or make some phone calls. ASD: Newly Identified 17

Virginia Autism Council 4/22/2017 7. Educate yourself by reading and attending as many workshops and conferences as you can There is a wealth of resources on the internet; free on line training is available if finances or time are an issue (www.autismtrainingva.org). Besides learning about autism, attend workshops on Special Education, Medicaid Waivers, and Person Centered Planning. ASD: Newly Identified

Virginia Autism Council 8. Consider applying for Medicaid Waivers ID (Intellectual Disability) Waiver ED/CD (Elderly or Disabled) Waiver DD (Developmental Disabilities) Waiver 4/22/2017 Medicaid Waivers are available to provide community supports for individuals with disabilities. There are different types of waivers. The upcoming video will provide critical information regarding Medicaid Waivers. ASD: Newly Identified 19

Virginia Autism Council 4/22/2017 Webcast Virginia Medicaid Waivers for Individuals with Autism Spectrum Disorder by Bradford Hulcher ASD: Newly Identified

Virginia Autism Council 4/22/2017 9. Set up a Special Needs Trust for your child, so future access to government benefits is not jeopardized A Special Needs Trust can allow an unlimited amount of assets to be held “in trust” for the benefit of a child or adult with a disability. These assets are not considered “countable” assets for the purpose of qualifying for certain government benefits such as Supplemental Security Income (SSI) or Medicaid. The current asset limit to qualify for these benefits is $2,000. Rather than grandparents or other family members leaving money directly to your child with autism, the money can be left to a special needs trust for the benefit of the child. This protects the child’s eligibility for possible future government benefits. Make sure that the attorney who develops a special needs trust is highly experienced in this type of work. Usually this would be an attorney called an “elder law” attorney. ASD: Newly Identified

Virginia Autism Council 4/22/2017 10. Seek other forms of assistance: Your child might qualify for: Supplemental Security Income - www.ssa.gov Medicaid, Family Caregiver Grants - contact your local Department of Social Services Family Access to Medical Insurance Security (FAMIS) - www.famis.org There are other forms of assistance your child may qualify for. We’ve provided information here so that you may investigate further. ASD: Newly Identified

Virginia Autism Council 4/22/2017 Finally, remember YOU are the expert on your child. You will meet many dedicated, highly educated professionals on this journey. What is recommended should be based on your child's unique and individual needs - not on what is available, what is customary for children with autism, or what is expedient. You and your child will have to live with the long term consequences of decisions that are made concerning his education and medical treatment. Always keep in mind that you are the expert on this child; trust your knowledge of your child and your parental instincts.   ASD: Newly Identified