Parents of children with autism are under a considerable amount of stress, more than the average parent. The daily demands of caring for a child with significant needs, the ongoing case management, and the need to advocate for appropriate services can be taxing.
It takes a village to raise a special child. One piece of advice—don't go it alone and don't isolate yourself and your child. Isolation can lead to more stress and despair for parents. Plus, it is important that our children have plenty of opportunity for socialization and trying out new skills in "the real world."
Personally, I have found it is important for our family to have outlets in the special needs community and the typical, every day environment as well. For a while, I became overly focused on everything to do with autism—reading every article and Yahoo post about the latest treatment interventions, being consumed with what caused this condition for our son, spending countless hours advocating for every service or insurance reimbursement, preparing for IEP meetings and attending many autism workshops and community events.
I became overwhelmed, and in the process I was neglecting my own needs, my typically developing daughter's needs for her own activities and life outside of the special needs community, and nurturing my marriage. Now, having a considerable amount of babysitting assistance most days of the week, reinvesting in my career, attending to my own needs for self-care and getting back into the "real world" with my daughter, husband and son with autism have normalized our lives again and mitigated our stress levels.
It is still very important for me have regular time with my friends who share this autism journey but also to maintain my relationships with friends and family who don't have this challenge—we are able to relate about our life challenges which may be quite different.
If you are finding yourself consumed with worry or despair (what we generally refer to anxiety or depression in the clinical world) and it has become chronic (lasting over the course of a couple months or longer), be sure to seek out professional help. If you have a health insurance plan, you can call the mental health number on your insurance plan and look into your insurance benefits for professional counseling. It is often just a matter of being responsible for your co-pay while your insurance can pick up the rest of the cost. Get a list of mental health providers in your area.
While it may be ideal to find someone who has first hand experience with special needs or has worked with special needs families, this is difficult to find, unfortunately. If a therapist has a compassionate, non-judgmental approach and has significant experience working with overwhelmed parents, that can often be enough to find a clinician who could be a great fit. If you have Medi-Cal, it can be fully covered if you use a Medi-Cal contracted provider, often through a mental health non-profit agency in your area. Either type of plan can also cover psychiatry if one is possibly in need of medication support, to assist in alleviating symptoms of depression, anxiety, impulse control issues, insomnia, etc.
If one is having a difficult time functioning on a daily basis, interfering with getting adequate sleep, over-eating or loosing one's appetite, significant changes in concentration, mood, judgment are all good reasons to look at discussing the possibility of medication support with a psychiatrist, who specializes in psychiatric medication management. Of course, if you are having any thoughts of hurting yourself or someone else, be sure to seek immediate professional help.
Another common time when a special needs parent may experience a re- triggering of the grief process could be when a child with autism leaves home, to live in a group home, or assisted or supported living situation. Typical stages of coming to terms with any type of loss include denial, anger, bargaining, depression and acceptance. It is not necessarily a linear process and we may go back and forth between these stages of loss and grieving.
A major life event or stressor (ie: child moving out of the family home and having to accept that one's child requires this level of care) can send one back into the process of grieving. In an ongoing effort to keep working towards a more solidified sense of acceptance of our child and our role as a special needs parent, the ability to reach out and access the support we need in the community can be essential for most parents (ie: autism parenting support groups, personal therapy, regularly scheduled respite, etc).
Here are some helpful, local community resources, with a lengthier list at the Autism Society San Francisco Bay Area Support Group page: http://www.sfautismsociety.org/support-groups.html
Stanford Autism Parent Support Group http://childpsychiatry.stanford.edu/Parent%20Support%20Group.html
Parents Helping Parents www.php.com
Support for Families with Disabilities www.supportforfamilies.org
Counseling and other mental health support agencies www.pyramidalternatives.org www.star-vista.org
Yahoogroups (more listed at http://www.sfautismsociety.org/support-groups.html):
Autism Intervention Bay Area https://groups.yahoo.com/neo/groups/AutismInterventionBayArea/info
Peninsula Parents of Special Needs Kids https://groups.yahoo.com/neo/groups/PPSNK/info
Diana Blank is the Single Parents Coordinator and a special needs workshop facilitator at Jewish Family and Children Services as well as a Clinical Supervisor at Pyramid Alternatives. She is also the mother of two wonderful children, one of whom has autism.