I have been thinking about doing this post for a while. When you think about having children, the first thing that comes to your mind is joy, not difficulty. The truth of the matter is, when you have children there will be difficulty: and it comes in all forms. I had all the normal difficulties raising children, however I had the added task of raising a child with autism and doing my best to make sure my other two children had what they needed. This was not always easy to do.
A child’s autism diagnosis affects every member of the family in different ways. Parents/caregivers must now place their primary focus on helping their child with ASD, which may put stress on their other children.
My son Steven, who has a diagnosis of autism, is now 28. He has a brother named Patrick (26), and a sister named Krista (22). Being a sibling to a brother with autism has not always been easy for the two of them. There have been many trials along the way and being honest I will never know how it was for them. I was Steven’s mother, and came from a different perspective. They had to sacrifice and be the “older sibling” many times.
A little about Patrick: From the beginning, he was the sweetest little human being. He went to all of Stevens therapy, doctor’s appointments and while at home he took part in all the therapy- related activities I did with Steven daily. I always was honest with Patrick about Stevens autism and answered any questions he would have. He was a huge supporter for Steven, and never one time complained about all we had to do to help him. Many times, he was the “older brother” and took on a nurturing role early on. The one thing Patrick did from the beginning, is treat Steven just like he would have if autism was not involved. Patrick always included Steven in everything he did. They had a love of video games–a little too much love–and enjoyed playing outside together just about every day. Steven, to this day, has such a love for his brother and they are both so lucky to have each other. Patrick now is a successful software engineer and has moved away for work. We visited him not too long ago, and he made us all a special dinner. Steven had his favorite meal made by his brother: a cheeseburger. Looking back, I wish I would have encouraged Patrick to do more for himself and spend more time with his friends. He is a great young man with a generous heart, and while I made many mistakes, I also know I did things right. Today, he and Steven have a loving relationship and I could not be more thankful about that.
A little about Krista: OK so no one prepared me for having a daughter! This girl came in to the world loud and filled with drama. She was the boss from the beginning. Having two older brothers did not phase her in the least. From early on, she told them what to do, and they did it! She demanded a lot of attention as a baby, and I was worried I would not be able to meet Steven and Patrick’s needs. I did the best I could, and as she grew, I was able to manage things a little better. It is a tough job, raising three children; especially when one has special needs. Krista never really asked many questions, but we still told her what she needed to know. She too went to therapy, doctor’s appointments, and was also a part of at home activities. Steven and Krista have had a very interesting relationship and at times was not that great. I think a lot of it was the age difference, but having a brother with autism can be tough. She is almost finished with college and will be an elementary school teacher. I could not be more proud of her. Today, Steven loves spending time with her, and she is the best sister he could ever ask for. Miracles happen!
Patrick and Krista have have had a very close relationship with each other. I believe this to be important because they have had each other to lean on and confide in. No one but the two of them can understand their bond and what they grew up feeling.
Steven has gone through some very difficult times. Since we are a close family, that means we went through those times with him. When things were difficult I tried my best to make sure Patrick and Krista were not affected. The truth is, this was their brother and it was very hard on them. I did my best to guide my children everyday and nurtured their relationship with each other to the best of my ability.
I have been asked by parents often how they explain autism to their other children. You simply say your brother/ sister has autism and we need to do everything we can to help them. Talk about autism early on, often and adjust your information as your children grow. Give your children permission to ask questions about autism and let them tell you what they think about it. This can lay the foundation for future conversations.
Listen to their concerns and fears. Siblings may feel uncomfortable with behaviors exhibited by their sibling with autism. I know in our family, when Steven would throw uncontrollable tantrums, this was very scary for my other children. They thought he might hurt them or my husband and me. The key is to listen to them and make sure they know they are safe and things will get better.
The most important thing is make sure they know they are loved equally, even though their sibling will take more of your time: this is just how it will be. Set aside personal, one-on-one time with your other children. I tried to spend special time with Patrick and Krista, even though it was not always easy. I was exhausted often and some days I just went through the motions. Many days I am sure I did not meet their needs. I have had to forgive myself for this because I truly was doing the best I could.
While not all siblings will have stress related issues, some do. These published by the Autism Society are some of the best ones I have seen and several have been true in our family.
- Embarrassment around peers; jealousy regarding amount of time parents spend with their brother/sister
- Frustration over not being able to engage or get a response from their brother/sister
- Being the target of aggressive behaviors
- Trying to make up for the deficits of their brother/sister
- Concern regarding their parents’ stress and grief
- Concern over their role in future care-giving as they get older
These are not something we need to consume ourselves with worry over, it is just a good idea to be aware that stress related issues can arise.
These days, there are new challenges and concerns. Being the brother or sister of a person with autism does not end with childhood. I know for a fact Patrick and Krista have concerns about what will happen with Steven when he no longer has a mom and dad around. This is hard, but something we all have to think about. I have the same concerns as they do.
My hope is that I have raised children that will look after their brother when my husband and I are gone. I never want them to feel as though Steven is a burden. However, I want them to make sure his needs are met, he is loved, happy and well looked after. I feel confident that, between the two of them, they will honor our hopes and that Steven will be OK in this life. Even without parents.
I would not be doing anyone a favor by skipping the most important part: all the good that comes from having a sibling with autism. Having Steven as a brother has taught Patrick and Krista invaluable things. He has helped to shape them into the adults they are today by teaching them, not to judge someone by the way the look or act, patience and understanding, unconditional love and acceptance just to name a few. Above all, he has shown them that nothing is impossible! They are both better human beings because of Stevens’ influence.
Siblings who have a brother or sister with autism are angels among us. They are a special kind of child/adult that loves in a way that only they can. They make this world a better place just by being in it. We could all learn from them in many ways and my hope is that blessings follow them all the days of their life. They deserve that!
This post is my point of view, but I hope in the future to have one that comes directly from Patrick and Krista. They are both busy, but I am sure they would love to give their perspective of having a sibling with autism.
Until next time,