Thursday, August 18, 2011

Sibling Relationships and Mindblindness


Many parents are rightly concerned about the neurotypical child in a family with a special needs sibling. There is worry that the NT offspring may feel put upon by having a SN sibling. Parents worry how the NT copes with less attention and the stressful situation that the family lives under. For this there is a great program called Sibshops or even private therapy. These programs are so that the NT child has a place to go that is safe, secure and just for themselves;  a group of like-situated peers who understand all that they deal with on a daily basis..

Additionally we as parents, then discuss the issues about relatedness and their special needs child. We talk about executive functioning, mindblindness, circle of friends, therapy, social skills, life skills and education supports, your child's rights and responsibilities of the schools. We talk about how to handle your SN child and how to apply practical advice and to try to create a world and a future for your child that is safe, productive and as secure as we can make it.

We commiserate about how our children are deprived of a typical childhood: no sleepovers, birthday party invites, team sports, and playmates in general. We discuss the constant meandering to therapy after therapy. We discuss the attempt to provide some semblance of normalcy in our children's lives; be it religion lessons, music or dance lessons, some form of sports lesson, art lessons, or just trying to find something that our child enjoys that is not connected to school, therapy or their disability at all. 

Truthfully, I found it much easier to share myself with both boys, then my friends who have both SN and NT offspring. Quite frankly my boys needed the same things, almost at the same time, and I found a way to coordinate their needs. Of course at one point I spent more time in the car shuttling back and forth between after school activities, religion classes and therapies. The children were fine. It was me that was run ragged. After those few years, I decided that we were going to scale back and that is exactly what I did. Oh I am still mommy-taxi, especially since neither boy can drive, CM1 because of seizures and CM2 because he is still too frightened, and I did find a way to go only in one direction at one time. Decoded… I realized I would live longer this way.

Furthermore, another area that we tend to talk about or rather obsess about, is the special needs child’s relationship to the world at large, to his teachers, peers and therapists. Yet noone really discusses how the special needs child relates to their sibling or how the neurotypical sibling relates to their special need sibling. How do the siblings relate if they are both special needs and there is no NT to moderate? Should the NT even moderate? Is this too much responsibility for  the NT child? These are some of the more important issues that many parents confront in a family with a special needs child. Yet it is like a deep dark secret that never gets addressed. How will my children relate to each other? How will my children accept each other? How will my children care about each other, especially when I am gone?

I have to tell you it was not even a thought on my radar. The boys did fight but I chalked it up to typical sibling issues. I thought, in the back of my head, that at least they are doing something like typical kids. But because of their aspergers the fighting and the relationship was problematic. They misread each other and took offense at the wrong things, have very little patience for each other’s foibles and no tolerance for any misstep they see in the other.

Why it never dawned on us that an aspergean, who has mindblindness when it comes to the world, wouldn’t have mindblindness when it came to their sibling is beyond me. I suppose we just thought it would work itself out. I would tell them that they are to take care of each other because they are brothers. I thought that I would make them have a relationship without having them understand what that entailed. I figured if I set down the rules, as they are so rule bound, it would just happen.

I would tell them they were to care for each other and not get annoyed at each other and that they had a responsibility to each other. But I could see it was just not working. I tried to grasp onto the time when CM2 was little and would look up to his big brother and protect his very disabled big brother from the world at large. I refused to see that they were now youngmen, adolescents, who had their own way of thinking and a possibly skewed perspective of what it meant to be a sibling.

I thought I modeled my relationship with my sibling well too, and having seen that they would learn from it. Brilliant-computer-sis calls almost everyday and we chat by phone. I go into the City to spend time with her away from them. Actually I think they don’t see that as part of a sibling relationship, they are just glad I am not home nagging at them to do their chores. Unfortunately modeling wasn’t working out the way I had hoped. Then as happens sometimes the boys themselves hit upon the issue and came up with a solution….

One day CM1 came to me and said he would like for CM2 to go into the therapy session with him. They typically followed each other. Yes I do use the same therapist for both. I know that many think that is a no no. But my boys didn’t care and quite frankly their therapist is very attuned to the growth and development of adolescent males. So I use the same doctor for both.

CM1 thought it would help in their relationship if they had some help from the doctor. It was no nice to see that he knew there was a problem and he wanted to fix it. CM2 said it would be fine if they did that and off they went. Well it’s been almost a year and they actually like it.  I did have to make some adjustments, because CM2 did complain that his brother never let him talk. We had to tell the therapist that CM2 was feeling left out, whether that was the reality or not, it was how he perceived the sessions. Other than that the idea has been terrific. I have actually have begun to joke and to call the sessins  the boys' "couple's therapy."

It is important to note that they do deal with their own issues in the session, besides working on how they relate to each other; what it means and how to function and interact on an appropriate level. They are also grasping the concept of lifelong FAMILY. Do they fight? Do they call each other names and loose patience with each other still? You betcha they do. But they learn that they belong to each other and are a part of each other and what that means. They work on being kind to each other. It is interesting because they can feel compassion for  a  far-flung tragedy and relate to how they have to help strangers, but understanding each other and having patience for each other did not come naturally to them.  

Will they always be friends? Will they always be there for each other? Only time will answer all these questions. I hope that they will be there for each other and understand through their mindblindness what it means to be a family. I hope they learn that you can loose that family through your actions and hurtfulness too and how to avoid that development.  I hope they learn how you step in to help each other in times of trouble and share in each other’s joys and accomplishments. I suppose sibling relationships in a family are never a given, no matter the configuration. However, it would be a nice dividend to a hard fought future for these boys to know that they do have each other to count on and that they understand what that means.

Has there been any sign of success so far? I think so…CM2 came out of the session today and happily announced that CM1 had paid him a compliment. He was so happy and thrilled. I congratulated them both.  Step by step, inch by inch…slowly.  "Couples therapy" a success? I think so, at least for today. 

Until next time,
Elise