Caring for the Caregiver

100 Day Kit for Newly Diagnosed Families

November 17, 2020

Changing the course of the life of your child with autism can be a very rewarding experience. You are making an enormous difference in his or her life. To make it happen, you need to take care of yourself. Take a moment to ask yourself: Where does my support and strength come from? How am I really doing? Do I need to cry? Complain? Scream? Would I like some help but don’t know who to ask?

Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.

Parents often fail to evaluate their own sources of strength and emotions. You may be so busy meeting the needs of your child that you don’t allow yourself time to relax, cry or simply think. You may wait until you are so exhausted or stressed out that you can barely carry on before you consider your own needs.

Reaching this point is not helping you or your family. You may feel that your child needs you right now, more than ever. Your to-do list may seem endless. You may feel completely overwhelmed and not know where to start. There may never be a convenient time to care for yourself, but it is essential to build self-care into your everyday life – even if it is just five or 10 minutes at a time. Each family is unique and deals with stressful situations differently. It is important to find the people, activities and routines that work best for you.

Getting your child started in treatment can help you feel better. Acknowledging the emotional impact of autism and taking care of yourself during this time can help prepare you for the road ahead. Maintaining open and honest communication with your partner and family, as well as discussing your concerns, can help you to deal with the many changes in your life.

As some parents may tell you, you may be a better person for it. The love and hope that you have for your child is probably stronger than you realize.

Here are some tips from parents who have experienced what you are going through:

Get going.

Get your child started in therapies and activities. There are many details for you to manage in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you can better focus on moving forward. It may also free up time to educate yourself, advocate for your child and take care of yourself. Getting started with therapies and interventions can help to build a team of people who care for your child and want to see them succeed.

Ask for help.

Asking for help can be very hard, especially at first. Don’t hesitate to use whatever support is available to you. People around you may want to help, but may not know how. Is there someone who can take your other kids somewhere for an afternoon? Or cook dinner for your family one night so that you can spend the time learning? Pick a few things up for you at the store or do a load of laundry? Or let other people know you are going through a difficult time and could use a hand?

Talk to someone.

Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Someone who just listens can be a great source of strength. If you can’t get out of the house, use the phone to call a friend.

Consider joining a support group.

It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources of information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you. You may find you aren’t a “support group kind of person.” For many parents in your situation, support groups provide valuable hope, comfort and encouragement.

You may also want to consider attending a recreational program for children with autism. This may be a good way to meet other parents just like you.

One study from Vanderbilt University, a part of the Autism Speaks Autism Treatment Network, found that mothers of children with autism benefit significantly from weekly stress-reduction classes led by other mothers. The classes reduced previously high levels of personal stress, anxiety and depression and improved the mom’s interactions with their children.

You may find a listing of support groups in the Autism Speaks Resource Guide at autismspeaks.org/resource-guide. Another avenue is through the local SETA (Special Education Parent Teacher Association) in your school district or online through the Autism Speaks Facebook page at facebook.com/autismspeaks. M y Autism Team, the social network for parents of kid s with autism, is another great resource. n this site parents of children with autism share their experiences including their reviews of local service providers, to help inform the parents in their communities. Visit the site at myautismteam.com. 

Try to take a break.

If you can, allow yourself to take some time away, even if it is only a few minutes to take a walk. If it’s possible, getting out to a movie, going shopping or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that this break will help you feel renewed for the things you need to do when you get back. Try to get some rest. If you are getting regular sleep, you will be better prepared to make good decisions, be more patient with your child and more able to deal with the stress in your life.

Consider keeping a journal.

Louise DeSalvo, in Writing as a Way of Healing , notes that studies have shown that: “ Writing that describes traumatic events and our deepest thoughts and feelings about them is linked with improved immune function, improved emotional and physical health, and positive behavioral changes.” Some parents have found a journal to be a helpful tool for keeping track of their child’s progress, what is working and what isn’t. Be mindful of the time you spend on the internet. The internet will be one of the most important tools you have for learning what you need to know about autism and how to help your child.

Unfortunately, there is more information on the web than any of us have time to read in a lifetime. There may also be a lot of misinformation.

As a parent, always remember to trust your gut.

There are many paths to take, treatment options and opinions. You know your child best. Work with your child’s treatment team to find what works best for your child and your family. Right now, while you are trying to make the most of every minute, keep an eye on the clock and frequently ask yourself these important questions: Is what I’m reading right now very likely to be relevant to my child? Is it new information? Is it helpful? Is it from a reliable source?

Sometimes, the time you spend on the internet will be incredibly valuable. Other times, it may be better for you and your child if you use that time to take care of yourself. The internet will be one of the most important tools you have for learning what you need to know about autism and how to help your child.

Read more about supporting your child after an autism diagnosis in the Autism Speaks 100 Day Kit for Newly Diagnosed Families of Young Children or School Age Children.

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You can also reach the Autism Response Team by phone or email: 888-288-4762, en Espanol 888-772-7050, or help@autismspeaks.org.