Thursday, January 19, 2017

Message to Future Jammie and Dexter...

Before my quick update and my assignment posts, when I last left off, Dexter was in a really bad place. The meltdowns were frequent, physical, and almost impossible to stop. He was struggling with a lot of anxiety, and it was having a significant impact on his ability to learn or even be in a classroom. He was just coming to grips with what his diagnosis meant and the permanence of it. He was hopeless, didn't want to be alive anymore and frankly, my anxiety and depression because of it were out of control as well.

Fast forward a couple of years to right now... things are fantastic! I know we have a long journey of ups and downs ahead of us because that's life. I'm aware that things won't always be this blissful. But the big question worth pondering is, "How did we get to here from there?" Part of the reason I want to write this is to share our story with everyone because education is critical. But I think the bigger reason for me to write this is so when we again find ourselves at the bottom and feeling hopeless, I can remember how we turned things around. Future Jammie, future Dexter... I know you are struggling and hurting, but you got through rock bottom once. You can do it again. Don't give up. Remember, you aren't alone, and these are some fantastic tools to start with...

1. Medical professionals. Jammie, you put this off way too long last time. Don't be stubborn! You have a great pediatrician, psychologists, psychiatrists, OT and PT... there is so much at your disposal. They've all seen you cry, picked you up, and then laid out a myriad of options available. Dex responded really well to the combination of these professionals, and he was barely old enough to participate. These are fantastic resources.

2. Medications. Yeah, I know. People balk. They judge you for medicating your kid. Side effects... blah blah blah... you know what? Going outside isn't an antidepressant. Dexter was seven and told you and his teachers that he didn't want to be alive anymore. Sending him outside wasn't the solution. Jammie, you and Shawn, you are smart. You research. You monitor. You ask questions. Meds are an option that can and sometimes should be used. The single best thing you did for Dex in second grade was getting him on anxiety medication. His. Life. Changed. He could control his emotions and didn't escalate from 1-100 in less than five seconds. It brought him down enough to be able to start communicating when he was starting to get frustrated. It proved to him that he had control over his brain. Sometimes meds don't work forever. Sometimes changes need to be made. Listen to yourselves. Listen to Dex. Don't let the world outside influence you.

3. Be a team with his teachers, paras, and administrators. These people were INSTRUMENTAL in turning things around for him because they believed in him. They didn't give up on him, even at his very worst. Dexie knew that Kim Lynam loved him even when his brain didn't cooperate with his heart. He trusted Carmen Kress and Megan Pick to give him options when he didn't see solutions and let him have the tools necessary to calm down, motivate himself or keep going. And you trusted all of these women to not only teach him and keep him safe but also to hold him accountable. Asperger's isn't an excuse to not do work, to be an asshole, or to not make amends when you wrong somebody. You trusted them because you worked with them and communicated your concerns and your successes with them. They didn't fail you. Be a team.

4. Get help for yourself. You know you struggle with anxiety and depression. Don't let it go without getting help. If the people you are closest to tell you that you need help, just listen. They aren't attacking you. They love you. Take breaks. You are lucky. So many special needs parents have no one they can hand their child off to, even for a few hours, to get a break. Don't be a martyr. You may want to be the one to be there for him for every meltdown, but Shawn is 100% capable. Let Dex leave the house and go hide with Jenny if he wants to. And talk to people. Keep writing. Don't force yourself into a solitude that isn't necessary.

These, and obviously a few other strategies, turned things around for Dex. We hit his struggles with everything we had. We changed routines, sought out medical and emotional help, got him in OT, and stood behind him as HE worked hard to learn how to make things better. And it did get better. New struggles will come up, and new solutions will need to be found. But, Jammie... Shawn... you've got this. You can do it. And Dexie, I love you. I love you in ways you'll never understand, and I won't ever give up. You aren't a struggle I overcome. You are a magic that I get to hold and that I'm lucky enough to get to be a part of. The fun, funny and joy far exceeds the hard. Please don't forget that.

Comm Class Learning Journal Week 5

This is another personal entry. I would guess very few people put it all out there like this... How do you fight with your partner?  We all have arguments. This week my reading was about conflict resolution. This is another area where our family (specifically Shawn and I) handle things differently than most couples. So here you go... How to fight fair with an Aspie!


Week 5- January 9, 2016

            Covering conflict resolution has been really interesting to me because my family of origin is very different than that of my husband. Being married to an Aspie also has created some interesting hurdles in conflict resolution for us. It took YEARS of learning how the other person works for us to find ways that work. Sometimes, the compromises I make are frustrating for me but doing it makes for a fairer playing field for our discussions and for finding solutions.
My family was very open about being angry or disagreeing. Shawn’s family was not. In Chapter 9, the book defined a new term for me: pseudomutuality. The book says it’s “style of anger characterizes family members who appear to be perfect and delighted with each other because no hint of discord is ever allowed to dispel their image of perfection” (Galvin, 2004). I read that to my husband, and he related because it fit his family of origin and his comfort zone in conflict resolution. His family is incredibly polite and kind. The two complete opposites we came from made for some challenging times for our marriage in the beginning.
             Having Asperger’s adds another layer of complication for conflict resolution to our marriage. It can be very difficult for Shawn to process all of my emotions and his default, when I am very angry or sad is to shut down. This is so frustrating for me. I came from a family that faces problems head on. We talk, yell, and cry, but in the end, we reach a resolution, and we love each other. Shawn just doesn’t, and likely can’t, work that way. It took years to understand this. When we are really at odds with something, I need to approach him calmly and begin by validating his feelings. If he feels attacked, he doesn’t know how to approach conflict in a reasonable way. Yelling and crying are not reasonable means of communication for him. I’ve also found that conflict resolution is much easier with him if we deal with it through writing rather than face to face. Doing this allows a lot of the overwhelming emotions (like anger, hurt, and hostility) to be tempered. We both have more time to think about what we want to say, we can wait until we are calm to deal with it, and we both get to say what we want without being interrupted by the other.
            All of this can easily be tied into the strategies for constructive conflict that are outlined in Chapter 9: Listening, fair fighting, and managing the physical environment (Galvin, 2004). Listening is key, and that’s something that can be difficult for me when I feel that I’m right. When I disagree, I sometimes cut him off before he gets to explain his thinking. Taking a deep breath and letting him walk away to the other room is hard for me but going straight to my computer to use messenger (or email if it’s not an immediate issue that needs to be resolved) allows me to say what I want and for him to say what he wants without being cut off. Since I’m not listening to respond immediately, I can read it over once or twice and actually listen to understand rather than respond.
Fair fighting is also improved for us by communicating through writing. There are times I type something and I know it’s just out of anger. I have the ability to delete it before I hit send. Once you say something out loud, the words are there. They cannot be taken back. I often find myself thinking about him sitting in the room next to me, reading what I send. I don’t want him to misinterpret what I say so I’m careful about my wording. (This is one of the downsides. Like the book says, technology takes away the nonverbal and the tones so it can be misleading. This, however, is precisely why this can be a better form of communication for an Aspie. Nonverbal, tones and body language are harder for them to pick up on and process.) I think when we write to each other we are a lot more likely to stay on topic and not get angry about words said out of anger, nasty tones or body language that serves to close each other off.
            Lastly, they discuss managing the physical environment. This was key for him. For Shawn, extreme emotion is hard to process and respond to. When he feels overloaded, his gut instinct is to shut down and leave. Over the years, I learned that following him or forcing him to stay creates an emotional wall that I can’t break through and also does long-term damage in that he became willing conflict at all cost. Knowing that he can and should walk away eliminates the feeling of him being trapped. My anger won’t follow him. He can sit in a room alone and explain his feelings to me.
            This method works for us, but it takes compassion, commitment, and an honest desire to be on equal footing rather than just a need to win an argument when working through conflict. It’s hard to let him walk away when I want to deal with it face to face. I had to learn to temper my anger/passion. He had to learn not to shut down and that even though he can walk away physically, he can’t walk away from the conflict altogether. We had to learn to love each other first, even when we were feeling angry or hurt. For me, that meant not just getting my way because I could bully him into shutting down.
            Being married is hard. Being married to an Aspie is harder. Being a mother of four is hard. Throw in a child with special needs and it the difficulties are compounded. I constantly wonder if I can be what all of my kids need. I worry that my husband doesn’t get the downtime he needs to recharge because he’s so committed to being a present and active father. Our family is not perfect by any means. But our family is probably filled with more love and compassion than most. Conflict resolution is something that is always at the forefront of our minds because we know that we have to handle it differently. We have to work harder than most to think of and take care of each other. Sometimes we fail and feelings are hurt but more often than not, my kids care for each other without being told. My husband usually feels safe in confronting me about sensitive issues and goes out of his way to make sure I get the time and space I need to dedicate time to being a full-time student. Perfect won’t happen, and we will always have to keep working at it, but I’m proud of my family because love, kindness, and compassion are easy to see. As a mother and a wife, I couldn’t ask for much more. (Now, I need to remind myself of this on the days I’m losing my mind over Aspie meltdowns, messy bedrooms, broken dishwashers and dogs throwing up on my floor because someone left the trash can open!)




References

Galvin, K. M., Bylund, C. L., & Brommel, B. J. (2004). Family Communication: Cohesion and Change. Boston: Pearson A and B.

Comm Class Learning Journal Week 4

This week is probably one of the most personal entries I've written. Shawn doesn't exactly hide that he's an Aspie but I don't think he's ever publicly put it out there either. This is kind of his coming out and I'm the one doing it. (I promise I cleared it through him first!) Having a child with Asperger's has a unique set of challenges. Being married to an Aspie (or for him a neurotypical) has a whole different set of challenges. Our relationship works but that's because we work. Hard. It takes a lot of love, compromise and a willingness to completely live outside the box and not care about how things are "supposed to" work. 

Week 4- December 28, 2016

This week, I again find myself analyzing how Asperger’s affects the means and quality of the communication in my family and how we’ve adapted to make things work. (Or in some cases, how we can’t adapt, and we just have to accept some of the struggles and set realistic goals and expectations.)
From the very beginning of the reading this week, I could easily see the application to my family. Chapter 3 discusses Family Theories and gives a list of some of the systems characteristics. We learn of interdependence; how we are all so interconnected that changes to one person affect the whole family. I was particularly interested when they mentioned that something that seems problematic could actually bring light to and fix other problems within the family. That was very much the case for me. When Dexter was five, we decided to take him in to be evaluated for autism. This was when we got an in-depth understanding of Asperger’s and autism being a spectrum, not a positive you have it or negative you don’t diagnosis. Through this evaluation, my husband and I both (but independently) realized that he has struggled with Asperger’s his entire life too.
This revelation was a game changer. We finally understood a lot of our communication problems, our differences in handling conflict, and I understood that I had very unrealistic expectations for togetherness, affection and socializing. In the end, what seemed like a problem we needed to address for Dex, ended up shedding light and providing solutions for a much larger set of problems than we could have ever imagined. My husband finally had a better understanding of himself and has found a community in which he feels he belongs. I have a better understanding of where he’s coming from. We are both better able to communicate and meet each other’s needs because we have a better frame of reference. It was very easy to see how interconnected our family was at that point and while the struggles affected each of us, the solutions we found did too!
Patterns and self-regulation within families were also discussed. The book often talks about explicit and implicit rules of communication. Here, the book discusses how families form patterns of communication that help members conform to the rules that they have. You come to know what things are acceptable to talk about with the family and with others. You learn what behaviors are acceptable. With ASD individuals, the subtleties aren’t as easily picked up on. What this means for our family is that Dexter won’t necessarily catch implicit rules. He also won’t notice if he’s talking about something that some people would find inappropriate.
If we want him to conform to a rule, we have to explicitly state it. Dexter doesn’t come in the bathroom when I’m taking a bath because I have verbally told him I’d like that time to be private for me. When he walked in, he didn’t pick up on me trying to cover myself in modesty. He has no intention of violating my privacy, but he doesn’t pick up on the nonverbal as quickly.
However, while I have forced him to conform to some of my rules because it’s what is socially acceptable for me, there are things I’ve learned that I need to give in on and break what is considered socially comfortable. Our family has significantly fewer subjects that we don’t talk about because if we don’t, Dexter doesn’t get to explore and learn about humanity, emotions, and societal norms. What we know intuitively or consider common knowledge, he doesn’t get without talking through it. We’ve talked in depth about what happens when people have babies that die. We talk about what happens physically, spiritually and emotionally so he can understand WHY people don’t generally talk about that kind of thing. Only then does he understand why, even though it’s true, he shouldn’t go and ask someone about a death in their family because he gets why there is hurt.
I’ve had to talk about things that I grew up knowing to be inappropriate subjects for a certain age, time, or group of people because I’m neurotypical and I pick up on those implicit rules. If I choose to tell him that’s not nice to talk about, all he learns is that some subjects are bad and that he shouldn’t get to understand them even though other people do. Our family talks about death, sex, spirituality, depression, hopelessness, anxiety, money, racism, homosexuality; all issues that probably aren’t considered appropriate for parents and children to talk about, at least at this age. It’s sometimes hard for me because my family of origin was more reserved about these subjects. But, for him to not live with fear and anxiety of the unknown and for him to understand the world and people around him, we talk about all of it and then talk about why others don’t want to. He has to explicitly learn common sense!
Chapter 4 goes on to talk more about family communication rules and defines that as “shared understandings of what communication means and what kinds of communication are appropriate in various situations” (Galvin, 2004). This is something that holds true even for families with Aspies. We obviously do have communication rules and Dexter understands them. However, he is a lot more likely to break them if he doesn’t agree with them. We don’t call people names: good rule. He sees the purpose because that hurts feelings. We don’t use the “F” word because it’s not appropriate language for kids: dumb rule. There is no real reason that it was decided that this particular combination of letters creates a sound that is bad when it isn’t something that degrades another person. He rejects the rule and sometimes doesn’t follow it. The book covers how rules change over time because they are always being tested and evaluated as the family grows and changes. They either are enforced or evolve. This one is evolving. Don’t swear in public or around friends. It will get you in trouble. Society doesn’t like the word even if it doesn’t directly degrade someone. If you are at home and muttering it while playing video games and not disrespecting someone with it, fine. I give. (Mom of the year here.)
The last part of this week’s reading that stood out to me was in Chapter 5 when the authors discussed relational currencies. This is something we’ve talked about a great deal in our marriage but in slightly different terms. The book The 5 Love Languages by Gary Chapman was a really interesting and helpful tool for me and my husband. It states that the five love languages are words of affirmation, acts of service, receiving gifts, quality time and physical touch (Chapman, 1995). All of the relational currencies listed in the book fall into these categories.
Just as our textbook says, Chapman also states that satisfaction and feeling loved is only effective when the person receiving the currency perceives it the way it is intended. How he says it, though, is that everyone has different love languages that they speak; meaning different ways they feel loved. For example, I don’t care about gifts. If I want flowers, I can buy them. I feel more loved when I get physical touch or when I come home to find the laundry is folded. I feel loved and cared for because you chose to value my time and happiness over doing something else, like watch tv. When I get time to be held before I go to sleep, I feel calm and at peace. The problem comes when I try to show love the way I feel it. Holding Shawn (my husband), an Aspie, can feel stifling. Acts of service can make him feel loved if they are the right ones, but again, sometimes that can be a subtle thing and go unnoticed. Rather than him feeling loved, I can feel unappreciated. Learning that his love languages are words of affirmation and quality time helped me to understand that he needs to be verbally built up and that time for him needs to be quality, not quantity because that’s just too much socialization and small talk. Our reading for this week again confirmed what I’d learned through Chapman.
Again, another week of finding a clearer understanding of my husband, my son and how are family works. I am growing increasingly more proud of our family’s ability to adapt and embrace our uniqueness!






References
Galvin, K. M., Bylund, C. L., & Brommel, B. J. (2004). Family Communication: Cohesion and Change. Boston: Pearson A and B.


Chapman, G. D. (1995). The five love languages: How to express heartfelt commitment to your mate. Chicago: Northfield Pub.