Lesson #3: There is Family Life After Autism  (Maureen)

Most parents worry how autism will affect the health and happiness of their marriage and other children within the family.

One of my first worries was how to explain autism and Justin to his siblings. Why for instance Justin frequently ignored them, but would periodically bop them on the head when they sat in front of him in the car -when I didn't understand him myself.

One day after dropping Justin off at school, Michael (car seat age) said, “Justin doesn't talk and is autistic and is older than me, so will I be autistic and not talk when I am older?” And I thought, ‘here it is, THE TALK’, and proceeded to earnestly explain autism, mental retardation, etc. Then I asked Michael if there was anything else you want to ask me…he pondered and said, “yeah, if everyone died, would there still be television?”

It was then that I realized long elaborate explanations were not needed. I tried to give brief age appropriate explanations. Conversations included lots of ‘I don’t know’ and ‘I know it's hard’ talks, but stressed that as a family we stick together and work things out. I learned that often, the kids take cues from us. They can also be incredibly insightful. At a very young age, Patrick said, “You yell at us when you are mad at Justin” and that was true. I also remember hearing him introduce a friend to Justin one day, “Justin doesn't talk, but he is the best skater in the family”. This was an imitation of my habit of trying to point out Justin’s strengths because his weaknesses were so apparent.

My kids say they have never experienced teasing of Justin or them by their friends…amazing. This may be because of personality and gender, they do not seem to care what other people think. Or it may be that their friends take cues from them. I always wanted my house to be a center of activity, so the kids would not feel isolated. I've learned to be careful what you wish for, because it is the meeting place for their teenage friends and while they don't find it stressful, I do, as I worry about Justin having a tantrum amidst a group of teenage boys and girls.

It's not to say the kids find it easy living with Justin. They get frustrated when despite locked doors, he gets into their stuff. They get their feelings hurt with Justin's unprovoked aggression, even though it is milder than the wrestling they do with each other. Unlike the Walton’s where everyone says “Good night John Boy”, in my house the boys often still holler, “Justin go to sleep!” in irritated tones. I tell them the one consolation is that they will sleep through anything in college.

My husband and I learned a 'divide and conquer' parenting style. Early on we did things as a family: skating, swimming, etc. As the kids got older and started voicing their opinions about free time, and Justin’s behavior as an adolescent became more unpredictable, we tended to divide-- Rob with the sibs and me with Justin. Except for a yearly beach reunion with my extended family, we left Justin at home when we traveled. At first I felt guilty, then I recognized he would be miserable and we all needed a break. If I did anything right when the kids were young, it was trying to set aside time on a regular basis, including vacations, to focus first on them.

My biggest fear is that they would turn to me in their late teens and tell me living with Justin had ruined their childhood. Michael sat on a sibling panel at an ASNC (Autism Society of North Carolina) conference several years ago. It was a relief to hear his responses to questions that indicated despite hard times, Justin had enriched his life and deepened his compassion. It was also fascinating to me that he could not answer several questions about what life would be like with a typical older brother, without Justin. It was a light bulb moment for me...I had grieved the loss of a ‘typical’ family for him because I knew what it was like to grow up without a sibling with autism. He did not grieve that loss because this type of family is all he knew.

We still have issues of future guardianship ahead, though we have begun to talk, at least discussing our expectation that while Justin will not live with them after we are gone, we hope they will be his future advocates.

Marriage: I have been married 29 years and Rob and I would agree that Justin's presence is the most stressful thing we have faced in our marriage. But that is not to say that if it hadn't been Justin, it would not have been something else. Any event that leads us too little sleep, too little money, too little time, too much sadness, too much unpredictability will be a strain on a marriage.

Rob and I have talked, yelled, cried, and hugged out the many adjustments we've had to make. Four important lessons we learned:
People grieve differently. I was sad, Rob was mad. You can’t make your partner grieve the way you do. For our 25th anniversary we renewed our vows. We each spoke about what we had learned from each other. One of the lessons I learned from Rob is that you can grieve differently for the loss of a dream child and still be deeply united in love for an eldest son.
When problems arise, the issue giving problems is not always really the issue. It's that we are both needy (sad, tired, angry) at the same time. It is important for us to say that out loud and name it. It helps to lower expectations about what we can give and get from each other at that time.
Never go to bed angry. Be prepared for long nights.
It is usually the marriage partner side of me that gets the most resentful, full of unreasonable expectations like ‘you always, you never’. When I consider a problem from the friend side of the relationship, I more easily see where Rob is coming from, what he’s going through, and can feel compassion for what he is experiencing.