A look at one relationship
January 15, 2008 by admin
Filed under Uncategorized
Relationships are hard work. And you certainly don’t have to have autism for this to be true.
Thomas
I met Theresa in, of all places to meet someone, an America Online chat room. However, this particular chat room involved parents supporting other parents of children with autism. There was the occasional bad apple who would pop in every now and again, but for the most part it was very helpful to those who attended. Theresa lived in Virginia, and one day her work brought her to Ohio, where we met. As it was my 34th birthday, she brought me a bear that I have been sleeping with ever since.
Theresa is a challenge, with three kids from a previous marriage (two with autism; one diagnosed before we met and one after), and I am sure I am a challenge with autism. I am not sure I care to know which of us is more of a challenge. I don’t think it really matters.
I had been in relationships before. Two of them were serious. They didn’t work out, and I was at the point in my life where I had just about given up. I had seen autistic friends of mine get married and get divorced. I didn’t want that to happen to me. Was I really ready to try again? It was try again or be sad and lonely all my life. I knew I didn’t want to be sad and lonely, so I decided to try again. Problems on both sides immediately appeared. Her insecurities and my sensory problems made the relationship difficult.
Theresa
When I first met Thomas, I was just coming out of a divorce. It was a difficult marriage; having a child with autism makes any marriage more challenging. I had heard of Thomas McKean and his writing before I actually met him online. It was a time of searching for me because my youngest son was showing some strong autistic traits as well. I was primarily searching for answers, but what I found was a good friend. Thomas was compassionate and understanding of everything I was going through. He was the person I would call when that IEP did not quite go right. He was the person I could cry on when things were getting out of control.
We decided to make a go of it. My trust issues were a big concern to him, and his sensory issues were a huge concern for me. We started talking more on the phone. There were many nights when we would talk until 4:00 a.m. Thomas always had a way to make me laugh. Thomas’ charm, wit, and continued compassion were some of the reasons I fell in love with him. We lived about 7 hours away, and we did get to visit often. I remember the first time I went to visit. I met with Thomas on his birthday. I think we both knew how special our relationship would be then, but our insecurities held us back. It was several months later before we said we would try to date.
Thomas
Theresa seemed different from the others. She had an understanding about her that I found very hard to resist. She not only tried but was able to relate to me in a way no one had before. How could I not love her?
Theresa
We have now been dating for several months. Our commitment and love for one another is strong; however, there have been continued problems. Many couples have little disagreements and concerns, especially when first dating. Ours seemed to be amplified by problems associated with autism. I felt like, “This is great. Now I have autism times three in my life.”
Thomas is moving to Bedford to be with me and the kids, and I have supported him in that decision. He has had the desire to leave Ohio for quite some time, and my little town seems to be ideal for him. The fact that I am here helps, too. I am excited about his move, and I have made the commitment, as he has, to make this relationship work. There are some days I have doubts, though, as I am sure we all do about people we get involved with. I am also very much aware that the move will be very difficult for Thomas–a transition that will pose its problems to everyone. I am proud of him for this decision, and it shows me how much he is willing to make it work for us. Ordinary people would be in the boat that says, “It’s not a big deal for me to move to the people I love,” but I know that for Thomas it is a strong challenge to move to be with us.
Thomas
It is true that I have wanted to leave Ohio for quite some time. Aside from a few close friends, there is nothing keeping me there. Columbus is not a very pretty place, nor is it very friendly. Having done a lot of traveling the past several years, I have seen that there are places far, far better to live than Columbus.
Bedford is a wonderful place. When you walk outside in Columbus, you see the freeway. When you walk outside in Bedford, you see mountains. When you walk down the street in Columbus, people go out of their way to avoid you. When you walk down the street in Bedford, people stop and say hello. No one is moving at warp speed in Bedford like they are in Columbus. The saddest part of people moving so fast in the big cities is that while they are moving fast, they really don’t know where they are going.
I have made several friends here in Bedford already. It is frightening to leave a place you have called home for 34 years, but it is also exciting to be starting over.
Theresa
There are many problems we face as a couple that “typical” relationships do not encounter. The biggest problem in our relationship comes from sensory issues. The second time I met with Thomas, I kissed him on the neck to say “Hi” to him. He pushed me away and said it hurt. During that trip, I was also a little sweaty from the long drive, and I got pushed away and told to take a shower and then he would hug me. Warning bells went off. I was thinking to myself, “I just drove 5 hours to see you, and you are pushing me away for kissing you.” Well, I am finding out that is only the tip of the iceberg. The tactile issues are so severe at times that intimacy seems like an impossible task some days. I need to always remember not to take it personally that Thomas needs to be touched in a certain manner so as not to cause him to be in pain. I believe we all have ways that we prefer to be touched over others. Thomas has to have deep pressure. I cannot go up to him and caress his arm or hand. I have to go give him a bear hug or rub his arm, rather than the simple caress that I prefer. Touch on certain areas of his body is a cause for pain. On his neck and face, touch is enough to cause him to cringe, as it physically hurts him. Thomas has been great about telling me what he does prefer and what brings him pleasure. I was very hurt by how roughly he would push me away, so although he does still cringe, now he says it tickles in a more gentle tone. He shows me what touch is pleasing to him and how to do it. I, on the other hand, show him that I don’t like a strong touch, but I prefer a light, gentle one. I also know that this is difficult for him at times, but he gets a 10 for effort. With good communication, this is an area in our life that has improved a great deal. I must say this about Thomas–and I cannot say it enough–he is always willing to try. His effort to make our relationship work has been worth it all, even on those tough days.
Thomas
One of the things I find most difficult in our relationship is Theresa’s occasional tendency to get upset about being on time. A good example of this is that sometimes in the morning she will tell us all to hurry up if we have to be somewhere. I have to keep reminding myself that it is nothing personal and that she just wants to be on time. This can be hard for me because I have a way of taking these things personally.
Her kids can be a challenge for me, too. I am in the very awkward position of not knowing how far to go or not to go to have fun or to discipline. Theresa changes her mind about this constantly. I am sure that as the relationship goes on, it will settle into a routine regarding those issues, but right now I am not sure what to do. A lot of times I come to her for help with the kids. Sometimes she tells me it was the right thing to do, and sometimes she gets mad at me that I didn’t handle whatever the problem was myself. This is something I find to be very confusing.
Theresa
Another hurdle that we continue to try to tackle is our differences in motivation styles. I get up at 5:30 a.m. and go all day, until I pass out again around 11:30 p.m. With three children, being a single parent, taking graduate courses, and working part time as well as on all the boards and volunteer work, I am up all day and running. I enjoy this; I like to keep busy. Thomas will go to bed leisurely around 2:00 a.m. and get up around 1:00 p.m. or so the next day. We discussed this for quite some time because when Thomas comes to visit me, I want him to join me in some of my activities. So we finally agreed on a solution there as well. Thomas said that he had “balls” he could juggle in a day. He explained what could cause him “to lose a ball,” such as going to a meeting with me, but that by playing frisbee with JR maybe he could gain one back. He would communicate when too many balls were being juggled and he was overstimulated. I know, after being with Thomas for so long now, when he feels it’s too much; he clings to me and constantly wants deep pressure, especially through being hugged. I look for these external clues as well as for his verbal ones. I am learning to join him in his circle and find out what his needs are. When I manage to do this, Thomas is much more relaxed, and therefore I am as well.
Thomas
The same can be said of me. When she is happy, I am happy. I love to see her smile. It makes my day brighter. Theresa has to remember that I have lived on my own for a very long time. And now here I am, trying to fit in with a family of sorts. No one can do this overnight, autistic or otherwise. The past 3 years of my life have been filled with nothing but conference appearances, because I have been very depressed. I find I am not so depressed when I am with her, but now I have the problem of figuring how to fit in and join a family unit, as opposed to being on my own.
The nice thing about living alone is that you can do what you want when you want to do it. I have found that this is not so in Bedford. Even something so simple as checking e-mail is a challenge when the kids want your attention. You have to learn to balance your own needs and desires with those of the children you are helping to raise. This is not an easy thing to do, but I am trying to learn, because I have felt a sense of accomplishment when I get it right.
There is also a problem of sensory overload that is evident in autism. With three kids, this happens to me more than she thinks it does. I think it happens to her more than she thinks it does. We are still working on how to deal with this, and it has led to many arguments. But one thing I can say about Theresa is that we always make up.
Theresa
As Thanksgiving is almost here, we have found another issue that is becoming more apparent to us–socialization. Thomas is terrified about going over to my parents for Thanksgiving. This has caused a huge disagreement between us. I have felt that you need to spend holidays with your family and that it is a time for celebration. Thomas informed me a few days before the holidays that he did not like holidays and that he would prefer to stay at home while we went to my family’s house for dinner. I am well aware of the anxiety that Thomas would have to go through to attend holidays with others, but I offered some compromises, such as a room he could escape to that had a VCR and a TV in it as well as a bed so that he could have some down time. This still is causing some stress between us, and it is making me realize that there are many things that will not be “typical” in our lives. Thomas is going to try. Maybe he can bring his car so that if it gets to be too much, he can go home. Again, his willingness to try has been a strength for us.
Thomas
Our lives will never be “typical,” there can be no doubt about that. That can be said to make it more exciting, though. Never a boring moment with Theresa. Not like there was when I was alone. It is no secret to those who know me that I don’t like holidays. I can be bribed to do Christmas, and I usually am bribed by these things called “presents,” but other than that, I’d be happy leaving the holidays alone because all they do for me is remind me how different I am, and I can surely do without that. Thus, spending a holiday with a family that I don’t even know is not something that I find to be comfortable. Spending a holiday with a family I do know isn’t comfortable, either. We all muddle through these things we don’t like for other people, I guess. The sacrifices of love. Looking at it objectively, how bad can it be?
Theresa
There are many issues on both sides of the fence. I know that for Thomas my three children and my trust and anxiety issues about going into another relationship are a concern. Thomas has been great with the kids; there have been many times when he comes to me and asks what to do in a certain situation. There are times I have had to interrupt and mention different ways he could have handled a problem that arose. I have felt that our communication skills have gotten us through a lot of these obstacles. When it does become too much for Thomas, he always has an escape route-somewhere he can go to take a break away from everything. There is something to be said about having children with autism. The environment is very conducive to any child or adult who falls into that spectrum. I am aware of the surroundings not becoming too overstimulating and of how to handle behavior issues as they arise. I feel like I am an expert in sensory integration methods. Thomas brings wonderful insight and a tremendous source of encouragement to me and the kids. There are many positive things in our relationship. One of them is that he continues to help and understand the kids like no one else can.
Thomas
Theresa’s trust and anxiety issues are very hard for me. She likes to compare me to her previous relationship, and she wonders if I will hurt her. I tell her I love her, and she thinks I am making it up. That really hurts me sometimes. I have no intention of hurting her because I love her. She has suggested that we go to therapy sessions together as a couple. While most men would reject this idea, I actually welcome it, as it will give the relationship a better chance to succeed. If I am going to move from where I have lived all my life to someplace I have not lived before, I want–even need–all the help I can get for this relationship to succeed.
Theresa has shown me that I have knowledge of myself I didn’t know was there. She has shown me that I am stronger than I think I am. She has shown me that I do have talents that have been going to waste for the past few years in that apartment. She motivates me to move forward, one small and slow step at a time.
Theresa
There are many ways I have adapted to make Thomas’ “world” a little better. Thomas is disorganized, and he tends to forget where he puts very important things like his medication or his sunglasses. Thomas hates bright sunlight, so I always make sure to have his sunglasses ready for him. If we are heading out, I put them in my purse when we are going somewhere so they are ready before we go out into the sun again. The sun causes him to be physically sick, so I try to manage to make him more comfortable. I know the things that can help him regain his “balls,” so that he is more able to cope with his day. I know big hugs and deep pressure are a way for him to stay focused in his current environment.
Thomas
There are many ways I have adapted to make Theresa’s “world” a little better. The main thing I have done is to take on a father-figure role for the children, especially the older two. I play with them, feed them, put them to bed, and I watch them for her while she is away, without asking for compensation. The oldest, JR, is very easy to like. I can go to a toy store and get a toy that I like, and he will like it, too. Amy will start out being afraid, but she will eventually join us, and that makes it even more fun.
I don’t always like getting out of bed in the morning because I am so used to sleeping through it. Sometimes there is a doctor’s appointment or something going on at the school that I have to be involved with. I have found with time that these things are not only okay, they are very special. This may not be the ideal family, but it is a family that loves me. To me, that is what matters. I am fortunate to have them.
Theresa
As we arc fortunate to have Thomas. Through all of our difficult transitions and the trials we have had to experience, one thing does remain: Our love and commitment to one another has withstood all of our difficulties. It took us a while to make that commitment. There were many times that we wanted to walk away from it and from all the problems that we knew we were going to encounter. We have handled our problems not only by communicating but by praying together. God is something we both have in common, and a tool that we have used because if we did not, we know that our relationship would be impossible. Thomas has been great about going to church, even though the social nature of it at times is too much for him. He has a good relationship with the pastor, and the church has welcomed him with open arms. Once again, Thomas has shown me that he cares enough about us that he is willing to overcome his initial fear and transition problems.
Thomas
One time Theresa and I were at a restaurant, and I wagged a fork at a waitress and Theresa said I was flirting with her. So now I wag my fork at Theresa. It has been very hard getting to where we are, and we have both walked away more than once, only to get back together again. The fact that we do get back together again gives me great hope for our future.
Theresa
I must also realize not to expect so much from him. This is very hard for me to do. I forget that he is not comfortable with some things, that he would prefer certain routines, and that he has his own expectations, not mine. When it does become too much for him, and he reminds me of the struggles he faces, they are, therefore, my struggles as well. I want Thomas to fit into our home and our lives; I want him to feel like my home can be his as well. In order to do this, I must put my own needs and desires aside at times. This is hard for me; I want to also be as independent as possible. As I watch how hard he works, I am compelled to give up things that I would rather do to please him and make him happy. So many times I have seen Thomas do things that I know are so hard for him, so I also have committed to doing things that don’t always make me comfortable. An example of this would be shooting rockets. I do love to do this with him and the kids, but after half an hour, I’ve had it. I have learned, however, that this is a way that Thomas gets his “balls” back, and when he is happy and content, I am as well.
Thomas
The rockets are fun mainly because of the kids. It is really fun to see a rocket go up a thousand feet or so and to have one of the kids catch it on the way down. I also like it because it is fun for me as well. I like to do things like fire rockets and fireworks and ride the go-carts and such. I never really had a chance to do that when I was younger, so I am making up for that now. I am very glad that Theresa understands this.
Just as she must put her own needs aside sometimes, I must do that, too. The kids sometimes–many times–come first. This is by nature of having children, and it is something that I am not so sure is bad, but it will take some getting used to.
Theresa
Our roller coaster goes up and down a lot of days. When Thomas does not seem to understand a social situation, or when it becomes too much for him, he tends to shut down. This is the most difficult time for me because many times I do not know how to fix it. He just runs off somewhere and I get worried; I know he needs that time, but I wonder how long it will be and how I can help. He can usually shrug it off eventually, but I feel useless at those times in our lives. Thomas also can be a little impulsive and do or say things and later realize it was not the most socially appropriate thing to do. He has been very good about apologizing at those times. He is also very good about asking and restating what the most “typical” thing to do in that situation would be. There has been many a time I have wanted to hide when Thomas does this. What I have learned is that Thomas really has to be taught all of those social graces. We tend to take this for granted, but he has to learn what to do, memorize it, and then try to replicate it again in a similar situation. Thomas tends to overexaggerate it at times. The constant practice at times can get to me.
We role-play quite a bit to achieve these social graces. Thomas loves to role-play to make sure he gets it right, so he feels like he fits in. A neat example of this was a few months ago, when I mentioned to Thomas that not everything needed a verbal answer; sometimes a simple gesture would do. Thomas went right to work starting to figure out what gestures were appropriate in certain situations. He would ask others who were close to him, “Was that a good gesture? Was that right?” It was funny, but I realized what I had taken for granted; this man must literally practice daily. We also role-play to make sure the right terms and meanings come out. Thomas will say almost daily, “Let’s try that conversation again to make sure we have it right.” He has been very open about criticism and always willing to try out new things. Once again, our saving grace has been Thomas’s ability to try almost anything. He wants to make sure he fits in, and he feels bad when he feels that he does not.
Thomas
The role-playing goes both ways. I had heard that people with autism did better when they role-played, so I decided to try it. Theresa has also role-played. An example of this would be a recent IEP meeting for JR. We went to a restaurant, and I pretended to be the bad guy. I role-played some of the things I thought he might say so Theresa could practice what to say back to him. She did very well, and I was proud of her. She did even better at the actual IEP meeting.
I don’t think I will ever understand gestures. I have been practicing and trying to get them right, but they don’t really make sense to me. I watch people on TV do it, and they seem so casual about it. Jason Alexander is a master of gestures. My life is complicated enough; I don’t need to turn into a George Costanza to make it even more difficult.
Social graces are lost on me, too. Nowadays, everything must be “politically correct,” and it drives not only me crazy but many others as well! Another example is when Theresa went through the toll booth; she gave the lady her money and said, “Thank you.” Why would you want to thank someone for taking your money? These are the kinds of things about the general population that I don’t understand. Maybe I don’t understand them because they don’t make sense?
Theresa
What Thomas does not realize at times is that I love him just the way he is, even lacking those social graces. Thomas’ usual wit and charm seem to rescue him many times with other people–as well as his constant impressions of others to relieve any dry moment in conversations. Thomas is a good man with a very compassionate heart. He shows his feelings in a way that I have seen no other man do. The movies that make me cry make him cry. The sadness I feel and verbalize he feels and verbalizes. These are great traits that show how open and compassionate he truly is. I would not know what to do without his wonderful hand that holds mine or without his hugs that make me feel like everything will be OK. He has a great saying that he uses and that we worked on during one very trying time in my life. He just says over and over, “Not to worry, everything is under control,” and I slowly settle down and believe it. He just lightly strokes my head as he says it, and I know he has taught me as much as I have taught him. He has taught me to slow down to appreciate those things that I take for granted–that a long hug is worth the world stopping for a short time and that it is still OK to go out and play every day.
Thomas
It is hard making it work. Yet at the same time, I feel a great peace when I am with her. This is something that is new to me. I like it. I’d also like to think I deserve it. She is a strong and wonderful woman. I am glad I met her. I am a better man for the journey.
Theresa
Yes, we will make it work. We know the struggles that we have to face–too many for me to even think about at this time. As we take one day at a time, we know that it will be worth all the work and all the time and energy a relationship takes. Thomas sings me a song that he has written called Always Wanted. This song describes the perfect woman and how he has always wanted her. The last verse is my favorite. After explaining this perfect woman, he says quietly, “You are what I always wanted.” It is very touching to me. What he does not realize is that he is what I have always wanted, too.
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