Fifteen Tips for Your Family
from Autism speaks
As a result of her work with many families who deal so gracefully with the challenges of autism, Family Therapist, Kathryn Smerling, Ph.D., offers these five tips for parents, five for siblings and five for extended family members:
5 Tips for Parents
Learn to be the best advocate you can be for your child. Be informed. 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.
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 the autism that has you so upset and angry.
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 should be.
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.
5 Tips for Brothers & Sisters
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. And, often it's easier when you have a professional counselor to help you understand them – someone special who is here just for you! 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.
5 Tips for Grandparents and Extended Family
Family members have a lot to offer. Each family member is able to offer the things they have learned to do best over time. Ask how you can be helpful to your family.
Your efforts will be appreciated whether it means taking care of the child so that the parents can go out to dinner, or raising money for the special school that helps your family's child. Organize a lunch, a theatre benefit, a carnival, or a card game. It will warm your family's hearts to know that you are pitching in to create support and closeness.
Seek out your own support. If you find yourself having a difficult time accepting and dealing with the fact that your loved one has autism, seek out your own support. Your family may not be able to provide you with that kind of support so you must be considerate and look elsewhere. In this way you can be stronger for them, helping with the many challenges they face.
Be open and honest about the disorder. The more you talk about the matter, the better you will feel. Your friends and family can become your support system…but only if you share your thoughts with them. It may be hard to talk about it at first, but as time goes on it will be easier. In the end your experience with autism will end up teaching you and your family profound life lessons.
Put judgment aside. Consider your family's feelings and be supportive. Respect the decisions they make for their child with autism. They are working very hard to explore and research all options, and are typically coming to well thought out conclusions. Try not to compare children (this goes for typically developing kids as well). Children with autism can be brought up to achieve their personal best.
Learn more about Autism. It affects people of all social and economic standing. There is promising research, with many possibilities for the future. Share that sense of hope with your family while educating yourself about the best ways to help manage this disorder.
Carve out special time for each child. You can enjoy special moments with both typically developing family members and the family member with autism. Yes, they may be different but both children look forward to spending time with you. Children with autism thrive on routines, so find one thing that you can do together that is structured, even if it is simply going to a park for fifteen minutes. If you go to the same park every week, chances are over time that activity will become easier and easier…it just takes time and patience. If you are having a difficult time trying to determine what you can do, ask your family. They will sincerely appreciate the effort that you are making.
Read Paying for Finn, a special needs child , an article from Money Magazine profiling a family with autistic child. John Nadworny applied his 20 years of experience in financial planning and knowledge of the costs of a child with a disability and walked the Howe family through a process to help them reach their goals.