Wednesday, October 14, 2009

Getting Siblings Involved and 15 tips for your Family with an Autism Diagnosis

Jason and I have spent much of our time talking, advocating and raising money for autism research . We have had therapists come and go through our house, playing and teaching Zion, and understandably our daughter Hannah sometimes feels neglected.

Through the years she has struggled with having a brother with autism. She is jealous of the attention he gets from everyone and some times she feels frustration with not having a neurotypical brother to play with. She has said many times she wished Zion did not have autism. Other times she has said she wished she had autism, so that we could have a walk just for her.

Letting her express her feelings, educating her about autism, and giving her much needed alone time with mommy and daddy has helped. But there are some of her feelings that I won't be able to understand, because I am a mother not a sibling of someone on the spectrum. We have done a couple things over the years that seem to have helped develop her confidence and a purpose as a sibling of a brother with autism.

First of all, Educate them. Hannah is a known autism advocate and I always call her Zion's greatest therapist. She has been here 24/7 teaching Zion everything a neurotypical child should know. She quizzes him on feelings, and does floor time therapy as well and I do. She knows what autism is and how many children are affected by it. She knows the different sensitivities that a child might have and what helps sooth Zion. Unfortunately, she also knows what triggers him, which just shows how they have developed a normal sibling relationship. I can never express my thankfulness at having a neurotypical child first, before Zion. She has been a great model for him.

Second, Get them involved. Making Hannah an integral part of our Walk Now for Autism team has given her confidence. She knows the other siblings of children on the spectrum in our community. She speaks to her girl scout troop and class about autism. She also befriends other kids at her school who are on the spectrum. She has been a patient teacher and friend to boys in her class who are struggling, just as she has been for Zion.

Finally, Do things for them that have nothing to do with autism. Girl Scouts, piano lessons, mommy and daughter trips (just went to California with her) and dance parties in the living room are some of the things she just loves to do. She comes first during these times. She gets our attention just as much as Zion does.

Sometimes we have let autism become our life to the neglect of everything else. I know every mother understands what I am talking about. But we must make sure our other kids know they are just as special and they have a wonderful and awesome place in our family.

I thought this article from Autism Speaks was really good for the family who has received a diagnosis of autism for their daughter or son.

Fifteen Tips for Your Family

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 that you are making.

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