Be patient with yourself. It will take some time to understand your child’s diagnosis and the impact it has on you and your family. Difficult emotions may resurface from time to time. There may be times when you feel helpless and angry that autism has resulted in a life that is much different than you had planned. But you will also experience feelings of hope as your child begins to make progress.
Changing the course of your child’s life 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 answer these questions: Where does your support and strength come from? How are you really doing? Do you need complain to someone? Scream? Would you 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, coping skills, or emotional attitudes. You may be so busy meeting the needs of your child that you don’t allow yourself time to relax 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 bad for you and for your family. You may feel that your child needs you right now, more than ever. Your “to do” list may be what is driving you forward right now. Or, you may feel completely overwhelmed and not know where to start.
There is no single way to cope. Each family is unique and deals with stressful situations differently. Getting your child started in treatment will help you feel better. Acknowledging the emotional impact of autism and taking care of yourself during this stressful period will help prepare you for the challenges ahead. Autism is a pervasive, multi-faceted disorder. It will not only change the way that you look at your child, it will change the way you look at the world. 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 realise.
Getting your child started in treatment will help. There are many details you will be managing in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you will be more able to focus on moving forward. It may also free up some of your time so you can educate yourself, advocate for your child, and take care of yourself so that you can keep going.
Ask for help
Asking for help can be very difficult, especially at first. Don’t hesitate to use whatever support is available to you.
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, support line or other services.
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 for information about what services are available in your area and who provides them. 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.
“At my support group I met a group of people who were juggling the same things I am. It felt so good not to feel like I was from another planet!”
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, go out, go shopping, or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that it will help you to be renewed for the things you need to do when you get back. Consider keeping a journal as it allows you to get your thoughts down on paper. Some parents have found journaling a helpful tool for keeping track of their children’s progress, what’s working and what isn’t. You can also log your emotions and how you feel at the time of writing, this can act as a release as you have cleared your mind and can refocus on the task in hand.
Be mindful of the time you spend online
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. 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 a break from autism and do other things.
Learn to be the best advocate you can be for your child.
Don’t push your feelings away.
Talk about them. You may feel both ambivalent and angry. Those are emotions to be expected. It’s OK to feel conflicting emotions. Try to direct your anger towards the disorder and not towards your loved ones. When you find yourself arguing with your spouse over an autism related issue, try to remember that this topic is painful for both of you; and be careful not to get mad at each other when it really is autism that has you so upset and angry.
Get involved with the Autism community.
Don’t underestimate the power of “community”. You may be the captain of your team, but you can’t do everything yourself. Make friends with other parents who have children with autism. By meeting other parents you will have the support of families who understand your day to day challenges. Getting involved with autism advocacy is empowering and productive. You will be doing something for yourself as well as your child by being proactive.
Take advantage of all the services that are available to you in your community. You will meet practitioners and providers who can educate you and help you. You will gather great strength from the people you meet.
Try to have some semblance of an adult life.
Be careful to not let autism consume every waking hour of your life. Spend quality time with your typically developing children and your spouse, and refrain from constantly talking about autism. Everyone in your family needs support, and to be happy despite the circumstances.
Appreciate the small victories your child may achieve.
Love your child and take great pride in each small accomplishment. Focus on what they can do instead of making comparisons with a typically developing child. Love them for who they are rather than what they could be.
Remember that you are not alone! Every family is confronted with life’s challenges… and yes, autism is challenging… but, if you look closely, nearly everyone has something difficult to face in their families.
Be proud of your brother or sister.
Learn to talk about autism and be open and comfortable describing the disorder to others. If you are comfortable with the topic…they will be comfortable too. If you are embarrassed by your brother or sister, your friends will sense this and it will make it awkward for them. If you talk openly to your friends about autism, they will become comfortable. But, like everyone else, sometimes you will love your brother or sister, and sometimes you will hate them. It’s okay to feel your feelings.
Love your brother or sister the way they are.
While it is OK to be sad that you have a brother or sister affected by autism it doesn’t help to be upset and angry for extended periods of time. Your anger doesn’t change the situation; it only makes you unhappier. Remember your Mom and Dad may have those feelings too.
Spend time with your Mom and Dad alone.
Doing things together as a family with and without your brother or sister strengthens your family bond. It’s OK for you to want alone time. Having a family member with autism can often be very time consuming, and attention grabbing. You need to feel important too. Remember, even if your brother or sister didn’t have autism, you would still need alone time with Mom and Dad.
Find an activity you can do with your brother or sister.
You will find it rewarding to connect with your brother or sister, even if it is just putting a simple puzzle together. No matter how impaired they may be, doing something together creates a closeness. They will look forward to these shared activities and greet you with a special smile.
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