By Joan Munnelly
Sunday, April 2 is the ninth annual World Autism Awareness Day.
I am the mother of a fantastic almost 20-year-old son with autism spectrum disorder (ASD). Here are just a few things I have picked up on my journey:
- Having a child with autism is not your fault. The cups of coffee or glasses of wine you drank or the vacation you took in a tropical disease zone or the hours you spent talking on your cell phone are not the reason you have a child with autism.
- Your friends and family are not always going to understand your parenting choices or how you feel about your child. Most will have an imperfect or incomplete understanding of your life and daily challenges. They may say or do ill-considered or harmful things and judge your parenting using unfair or irrelevant standards. You can help yourself and your child by helping them understand.
- Keeping good records is essential when it comes to accessing needed resources. An amazing amount of reports, individualized education plans (IEPs), authorizations, and other documents will come into your home. Try and keep them in one place so that when someone asks for a copy, you can easily provide it.
- Sibling relationships are complicated for all children and even more complex when a sibling has developmental challenges. The siblings of a brother or sister with autism often benefit from extra support from professionals and peers who understand their atypical experience. Sibshops can be a great experience for siblings, providing a chance to have fun with other youth who "get it."
- When a child has autism, family vacations are often more stressful than daily life at home. Sometimes, the very idea of taking a vacation seems like pure fantasy. If you can find one low-key vacation spot where the child with autism can become familiar with surroundings and routines that stay the same from year to year, that spot can become a refuge for the whole family. Familiarity and predictability can make all the difference.
- Everyone knows that caregivers need to take care of themselves but finding time for yourself usually means finding a respite program or babysitter who can care for your child with autism and that's rarely easy. JF&CS offers such a program on 20 Sundays a year called Kids' Connection Corner. This program is free of charge and will give you three precious hours to spend as you like – with your spouse, other children, or just by yourself with no external demands.
- You will have to advocate for your child but you don't have to do it alone. There are programs that can help families of a child with autism needs every step of the way, like JF&CS Autism Navigation.
Joan Munnelly joined JF&CS following a successful career as an independent special education advocate and consultant. Her knowledge and expertise cover the full range of services and benefits for people with autism spectrum disorder, including early intervention, neuro-psych testing, the individualized education plan (IEP) process, various therapies, autism-friendly activities, school choices, transition planning, guardianship and financial planning, and options for financing needed services. Joan is formally trained as a special needs advocate and consultant through the Federation for Children with Special Needs.
