SpecialNeeds.com

Dear Developmental Doc,
I am the father of a 6 year old boy who is severely handicapped by autism. My wife and I are doing everything we can in regards to getting him the best interventions available. But I have a nagging feeling that it’s not enough. The other night, I woke up in the middle of the night haunted by the question, who will take care of our son when we can no longer do the job? We also have a neuro-typically developing 3 year old, but I wonder whether it’s fair to saddle her with the long-term responsibility of taking care of her brother? Do you have any suggestions?
Lawrence S., Santa Clarita, CA.

Dear Lawrence,
Parents of children with special needs confront difficult life choices regarding the long term care of their children. I appreciate your thoughtfulness regarding the poignant question of whom and how your child will be taken care of when you and your wife are no longer able to shoulder that responsibility. Equally important is the question of how much responsibility you want your daughter to have in the care of her brother. While it might seem absurd to have to consider these questions when your children are 3 and 6 years old, you are making the first steps into a thoughtful plan of action for your son that extends well beyond your current intervention strategies.

The first suggestion I give to parents in my practice is to get an education. That means finding an attorney/advocate who understands the intricacies of wills and living trusts as they apply to special needs minors, and who will give you a complimentary first session that allows you to explain your specific circumstances to see if their support fits the needs of your family. Attorneys with this specialty can be found by contacting your local branch of the American Bar Association and asking for a list of specialists in this area, or by contacting your local autism support group (such as Autism Speaks, Autism Society of America or TACA-Talk About Curing Autism), for legal references and  guidance.

Second, consider having a discussion with your child’s school, in particular the resource specialist for special needs who can guide you through the IEP (Individual Educational Plan) process as it applies to services the school can provide now and as your child grows. By the time a child is 16, parents should have in place a plan for guiding their child’s next steps, whether in an academic or vocational placement, and should understand what services are provided by state agencies. By being thoughtful now in planning your child’s future, you will be starting the New Year with the power that comes from knowledge, insight and direction.

Esther B. Hess, Ph.D. is a developmental psychologist and executive director of a multidisciplinary treatment facility in West Los Angeles, Center for the Developing Mind. For more information and to contact Dr. Hess, please visit www.centerforthedevelopingmind.com.