Table of contents
Step 1: Know that it’s OK to need help
“We human beings are social beings. We come into the world as the result of others’ actions. We survive here in dependence on others. Whether we like it or not, there is hardly a moment of our lives when we do not benefit from others’ activities. For this reason, it is hardly surprising that most of our happiness arises in the context of our relationships with others.” (Dalai Lama XIV)
We are not meant to be alone.
This is especially true when life presents us with challenges. Parents of children with autism will undoubtedly agree that raising a child with autism is a big challenge.
Many new parents are surprised at the daily difficulties that are part n’ parcel of parenting, and those who parent a child with autism often experience a more intense version of that surprise.
Let’s face it. When we bring a child into this world most of us envision a bright future with a happy, talkative, smart and funny child that will brighten our lives and add nothing but sheer joy to our family. Children with autism indeed can bring utter joy to their families and beyond, yet that joy is peppered with conflicting emotions. That joy is brought on after going through many motions that were never on a parent’s mental to-do-list.
They never would have dreamed that they would be doing things that included therapists, wheelchairs, frequent trips to the pediatricians or continuous communication with wrap around services, state resources or federal programs, boards of education, and child advocates.
When we only envision perfect scenarios we can easily find ourselves unprepared for a lifetime of commitment to a child with special needs. That is why it is so important to remember this first admonition- We are not meant to be alone.
As one mom said, “the most supportive strength-giving, and empowering comment was from my husband after our child was diagnosed. He said, ‘who do you think you are that you think you’re going to do this all alone’?”
No human being can stay on a task with anything for 24 hours a day each and every day. We require rest, recreation and self care. These things are essential for our mental and physical health. If you do not take care of your mental health, your physical health will soon suffer.
Step 2: Learn to take more help.
Parents with children who have autism need help and they need to learn to ask for and accept more help. Trying to do everything independently of family, friends, and professionals is difficult, unrealistic, unmanageable and does nothing beneficial for you or your child with autism.
Allowing yourself to become overwhelmed by the needs of your child(ren) with autism can easily lead to depression and a host of other mental and physical problems. The old airplane analogy of putting your own oxygen mask on first so that you can be helpful to others around you, is a perfect comparison with how you should care for yourself as a parent of a child with autism.
Step 3: Discover your personal needs.
But first, before anyone can tell them what they should or shouldn’t be doing, parents want to stop and focus on discovering what their personal needs are.
A good place to start is at the very beginning and taking a little self care inventory.
Try answering these questions:
- What makes you happy? Reading? Exercising? Meeting up with friends?
- Do you value having quiet time to yourself? Or do you like being around a lot of people?
- Do you want or need to work full time? Can you afford to work with a special needs child?
- Do you need to make more time for your spouse? Your other children?
- Are you getting enough sleep? Housekeeping assistance? Good nutrition?
Questions like these are important to reflect upon because when we are presented with a challenge we tend to focus on the problem and allow other important areas of our lives to suffer. Well meaning friends and family are quick to advise, “keep your job,” “quit your job”, “your other kids need more of your attention”, “you need to think more about yourself” etc… but, each person is so different. And what works for one isn’t necessarily what’s best for another.
Make a list of all of the areas of your life that are absolutely essential and valuable. Remember to include your own priorities and feelings along with all of the important people and responsibilities in your life. It is not selfish to put “play guitar for fifteen minutes a day” on your list if this is something that calms your mind and brings you joy. The better you feel, the better you will parent and the better you will be able to think through what needs to be done each day. Once you have completed a self inventory, you can add those things that are important to you on a daily, weekly or monthly basis, to the list of things that need to be accomplished for your child with autism. Try to establish your own self care as a habit as early as you can in the daily, weekly or monthly schedule of responsibilities.
Step 4: Explore the types of available assistance:
There are so many resources to help parents cope with the special needs of raising a child with autism.
It is expensive to raise a child with autism. Thankfully, there are an ever increasing number of programs and opportunities for families who are struggling financially with caring for a child with special needs.
There are state and federal programs available for people who are disabled and are in need of supplementary income. If a parent is unable to work due to the high level of care that is required for a child with special needs, there are programs that will provide monetary benefits for the parent who is unable to work. The best place to start reaching out for this type of assistance is through Social Security (www.ssa.gov).
Medicaid waivers are available in most states and these waivers provide assistance so that a child is able to stay at home and receive services rather than reside at a hospital, nursing care facility or institution. The waivers cover the cost of medical treatments, respite care, in home care and support and transportation. Each state has a different program and a different title for their program but if you are seeking this type of help, just contact your state health department or search for “autism waivers” in your state.
The Department of Housing and Urban Development is a good resource for affordable housing. There are some wonderful programs out there for single parents and married parents of children with disabilities. The reduction in monthly housing expenses can be a huge relief from the worry and stress that a family endures when they are caring for a child with autism.
Government grants are often available to help with a variety of needs for children with developmental disabilities. Autism Speaks has a comprehensive list of grants that provide assistance with things like iPads, financial help with costs that aren’t covered by insurance, assistive devices like wheelchairs and medical equipment, holiday gift cards, social skills camp and more.
Many states offer supplementary help for services that are only partially covered or not covered by your family’s insurance. There are Autism Treatment Assistance Programs (ATAPs) available in some states that will help with copays and in some cases any autism related services that are needed for your child with autism. This is helpful to families that have restricted income because one parent has to stay home. Copays can be costly for ABA services, speech therapy and occupational therapy in addition to pediatric and neurology appointments.
Medicaid is a federal program which covers families with low incomes who cannot afford individual health care. Medicaid typically covers all costs for the families who qualify for this type of insurance.
For families that do not fit into the low income bracket for Medicaid there is the Children’s Health Insurance Program (CHIP). CHIP covers children up to the age of 19 who are between the low income qualifications required for Medicaid but who cannot afford private insurance. (https://www.medicaid.gov/chip/index.html).
Check your state health department or the Medicaid website for all of the available insurance options for families who have children with disabilities.
It cannot be said enough- We are not meant to be alone. Even if you have great insurance, a good school for your child, great doctors and a wonderful ABA agency that is working with your family… you still need to take that self inventory frequently and make sure that your needs as a parent are met FIRST. You are the rock and the foundation for all of the care and all of the organization of everything from medical appointments to school events. If you crash and burn from exhaustion, everything that your child needs- stops.
What does emotional support look like for you? Is it your family? Your extended family? Your church? Your best friend? A family pet? A support group with other parents who have children with autism?
What keeps you healthy and happy? Gym time? Proper nutrition? A massage or a pedicure?
Don’t forget your relationship with your significant other. A united front is a strong fortress. Two are better than one because you can take turns with the difficult stuff.
Whatever it is that keeps you happy, sane and feeling strong enough to handle the daily challenges is what you need to be doing. Everything else will fall into place if you are feeling cared for. If you live in the New Jersey area, Circle Care Services is here for you and your family. We provide ABA services, social skills groups for children with autism and we provide parental support. We understand the challenges and the stressors that families face when their days and their lives are filled with the details and responsibilities of raising a child with autism. Let us come alongside you as we have for so many other parents, to support you, and help you find peace with the daily tasks and the challenges that you are currently enduring. We are here for you.