Friday, February 24, 2017

Does My Son Have Autism Or Is He Autistic?

I ran into an unintentional conversation online the other day. It got me thinking a lot, particularly about the words we use on a regular basis. While I stayed out of this particular online conversation, as I sensed a troll lurking in the background, it was interesting to watch the comments. Here's how it began.

Someone posted an article or link of some kind with a comment about terminology and mental illness. The comment was something along the lines of referring to people as having a certain disorder, not being a certain disorder (e.g. she has bi-polar versus she is bi-polar). The argument being made was that people with medical illnesses are referred to as having a certain diagnosis, not being a certain diagnosis (e.g. he has cancer versus he is cancer).

I made a comment on the post about my youngest son having a diagnosis of autism and that I try very hard to tell people he HAS autism while trying not to say he is autistic. I personally do it this way because from my experience, it is easier for people to see the boy, the person he is, if I say he has autism instead of saying he's autistic. He is SO much more than his diagnosis and for me, I prefer saying it that way.

Someone made a comment to my post. Here is what was said:

"Please forgive my ignorance, but what's the difference? If he HAS autism, he IS autistic. They mean the same thing. Using the alternative phrase takes away nothing from him unless you let it. 

That's like claiming, "I predominantly use my left hand," is different from saying, "I am left handed."

I weep over the strength people give words for no reason whatsoever than to find things to complain about." 

OK, for those of you who know me in real life, it took A LOT for me not to answer right away. I took some time to think about what this person wrote (and cool down a bit, let's be honest here). As I was thinking, some other comments came in from others. Many of them were from people with autism and they all disagreed about how to phrase it. Some said they refer to themselves as having autism, others said they refer to themselves as being autistic.

If the autism community had told me there was a consensus about the terminology, I would have gone with what people prefer. But there was no agreement. So I went back to thinking about the original comment. I was having trouble figuring out how to verbalize my thoughts on this, so I did not say anything, as I did not want to get wrapped up in an argument with someone that does not know me or my son.

Anyway, here are my thoughts (and you are free to disagree with me). First of all, to address the broader issue that was brought up, words DO matter and words DO have power. I think a good majority of people know that. Yes, we can control our reactions to words. If you call me a bad name, it will probably hurt my feelings (not for very long, but it will for a second). Even if the word you use is not mean, the intent behind your words is hurtful and that will probably bother me longer. 

Words are our way of communicating, of conveying messages, of sharing memories and emotions, of building relationships. Words are also our way of hurting one another, of expressing negativity, of conveying the intent of our messages, of tearing people apart. Our words are very important. In this regard, I think I can agree to disagree with the person about giving strength to words (and for the record, I was NOT complaining as was suggested). Words can hurt and heal, and I think we all need to be cognizant of that.

Back to the autism versus autistic debate. Having autism, to me, sounds like it is something my son has but the phrase still allows him to be so much more. Being autistic makes it sound, to me, like it is referring to his behavior, that he is autistic all the time. And yes, technically he is autistic all the time because yes, he does have autism so it is with him all the time. But when he is playing Power Rangers with his older brother, or telling me how much he loves our pets (he LOVES animals), or he is singing me a song, I do not see his diagnosis, I see HIM. To me, referring to his diagnosis as having autism allows for HIM to be seen by others. Being autistic sounds to me like he is tied to it and his behavior is tied to it all the time, and I do not feel like that describes him best.

I can honestly say that I would probably have a different opinion on this if he did not function as highly as he does. I also think my opinion would be different if I had autism myself. But neither of those is true, so I can only make decisions based on my experiences. If my son gets older and he tells me he wants to be referred to as being autistic, I will certainly honor his request. It is his choice. When he's old enough, I'll even sit him down and explain to him that he can choose. I want him to understand that he does not have to do what I did, he can choose whatever term he feels reflects him best. And I will tell him that his choice is flexible, that he can change his mind. 

All the while I have to remember that regardless of the term we use, regardless of the term he chooses, it's all OK. 


Thursday, November 3, 2016

Giving Thanks

It's November and that means everyone on social media is now listing things they are thankful for every day. I usually do not partake in this, because I feel like keeping things to myself most of the time. And I often forget to do it, which causes stress for me because then I feel like I have to make up for it and it's just a vicious cycle that makes being thankful feel like a chore instead of feeling actual gratitude. But this year, I have a lot to be thankful for and I thought it would be better to lay things out here instead of on a daily basis.

I am at a point in my life that I never dreamed of. I have a job that was never on my radar while I was in college as an undergraduate. But this job makes me very happy, my coworkers are fantastic, and I have a schedule flexible enough to be home with my family more than most people get to. When my boys were born, I missed them so much while I was at work. I remember asking other moms how they dealt with it and a lot of them said the feeling never goes away, it just gets easier.  And I had trouble with that. I understand that the feeling of missing your children while at work/school diminishes as everyone gets used to a schedule. But I never thought it should be easy. For many parents, missing your kids might be an underlying feeling that doesn't get recognized on a regular basis, even though it's still there. But I never wanted to NOT feel that way. Missing them makes me appreciate them more when I am with them. And it helps them appreciate me. When I get home on the days I have to be in my office, I am always greeted by hugs, kisses, and a chorus of "I missed you, mommy!" and "I'm glad you're back!" This is important to me because when we had a more traditional schedule, I didn't get hugs, kisses, and a chorus of "I missed you, mommy!" and "I'm glad you're back!" Because we get more time as a family, we appreciate our time away as well as when we get back together.

I do not say this to knock families that function well in a more traditional sense. And I'm not saying that the way our family functions would work for everyone. What I am saying is that I made a choice to not settle when people told me I had no choice. I fought, alongside my husband,  to make choices and options for our family that worked best for us. We did not accept that we had no other options. We did not accept that we did not have to be happy. We did not settle and the fight was so worth it.

I am also thankful that this job has allowed us to homeschool our boys. I can work from home to help be a part of it. And it allows us to seek all of the therapies they need to help them be successful and happy. It was a very difficult decision to make and we have had challenges. It's not easy, but it's what is best for the boys, and I'm thankful that we have the ability to choose what is best.

I am thankful that my husband did not have to rush into a job he doesn't want or like. My job takes care of our bills and while it's not making us wealthy, it allows my hubby to make better, informed choices. He spent the last 3 years working a job he hated so I could pursue my dreams and get the job I have. So the fact that this job is now also benefiting him makes me feel happy as well.

I'm thankful for our uniqueness as individuals and as a family. I'm thankful for our ability to live life the way we want and not accept anything less. I'm thankful for a husband who works with me in this and considers all options with me, regardless of what others say or do. I'm thankful we are not a traditional family. Because I think we would all be bored and unhappy trying to fit into that definition of a family.

My hope for you is that you can be thankful for your family, however it works for you. That you make choices that are best for you and your family, regardless of what others are doing or saying. If you don't like how things are going in your life, I hope that you have the courage and support to make the changes you want. Because you deserve to be thankful and happy, too.

Wednesday, September 21, 2016

To the Man Who Gave My Son "The Look"

I've seen a lot of posts on various pages and blogs where the author writes a letter to a person, explaining some kind of situation or encounter involving their children. Many that I've read have been on sites for parents with children with special needs, medical issues, or something that makes a child "not normal." I never planned on writing one, even though I have special needs children. I didn't plan to write one because I don't particularly care what other people think about me or my children. My husband and I love them, our families love them, and that's all that matters. But I find myself with something to say anyway.

Dear Man Who Gave My Son "The Look",

I noticed you playing with your children at the park. I noticed you because, unlike a lot of parents I see, you were playing tag with your kids (no judgement, I know some parents use the park as a way to take a break). I thought it was great.

We showed up, two very rambunctious boys in tow. The thing that makes us stand out is usually my youngest son. He always wears a hat; not totally out of the ordinary but he always wears a train engineer's hat that used to belong to my grandfather. He is very protective of it, which can sometimes cause problems. He also wears what is comfortable, which means he doesn't always match and sometimes he downright clashes (but he is SO adorable). And on this day, he was also wearing one red glove and carrying a metal lunchbox (which was from Christmas) full of Thomas mini trains.

I saw you notice him. I saw "the look" we often get. You seemed a little confused or unsure about what to think. But, you didn't say anything, and you didn't tell your kids not to play with him. When they wanted him to join their fun, you just stood back. I was surprised, based on your initial reaction. I thought you would try to redirect them or distract them, but you didn't.

And then his lunchbox came open, spilling his mini trains all over the ground. He started getting really upset. Let me pause here. You don't know that he has autism. You don't know that his trains spilling put him on the verge of a meltdown. And as his mother, I could see the thunderclouds coming. I was getting ready to step in, when you did.

You were still playing with your children, very close to where my son spilled his trains. Before I could get to him, you and your children helped him. All three of you walked over and started helping him pick up his trains. I was so happy to see that, but for more than the reasons you think. Yes, I was happy to see you and your children help my son. But in doing that, you also kept him from getting wood chips on his one glove. Which meant I did not have to deal with another potential meltdown when I would have to take his glove off to remove the wood chips because the wood chips would have also caused a potential meltdown. You made his day, and mine.

Thank you, for everything, even though you'll probably never know.

Saturday, July 30, 2016

Learning About Mama

This year has been quite interesting for me. As a family, we are making some major changes (but that's for another time). I've also gone down a road of self-discovery, which has been very informative, albeit unplanned. Regardless of how or why this happened, I'm so glad it did. For me, it's not all about learning new things about myself but also admitting things that I never really thought much about before. Here's what I've learned so far:

Realization #1. My relationship with coffee is complicated. I drink a lot of coffee. Mostly because I have two young(ish) children, both very high energy and both special needs. I'm tired ALL. THE. TIME. I need caffeine to get through the day. But here's where the admissions/confessions start. I don't like coffee that much. Ok, I do like it some. But I don't like that I need it so much. I hardly taste it anymore because I drink so much and I would honestly rather drink something else. I really prefer hot tea. It's so much more flavorful to me. I drink coffee over tea because I need the caffeine and because that's kind of expected of me.

Realization #2. Anyone who knows me well knows that I LOVE mint. Peppermint, spearmint, wintergreen, doesn't matter. I love it all! In fact, I used to eat toothpaste as a kid because I like it so much (and I'm not joking). I have discovered another flavor I enjoy almost as much: cinnamon. This has been really fun for me. It started with cinnamon tea from my sister. Oh my goodness, it was SO yummy! So I started exploring this. Cinnamon ice cream is good too, especially with almonds. But the cinnamon tea, Chai, anything like that is my new obsession.

Realization #3. This is probably going to make me some enemies but here it goes: I don't really like chocolate. It's ok. I eat it from time to time, usually combined with mint (see Realization #2). But if given the choice between chocolate and something else, I will usually pick something else. It's just not really my thing. But again, it's kind of an expectation that women like wine and chocolate - I don't really like either one.

Realization #4. I am freaking awesome! Ok, this isn't really a new realization. What has been new, however, is how often I'm reminded of it. And I'm not sure if I'm being reminded of it more or if I'm actively seeing it more. But does it matter? Nope! I know I'm awesome. An awesome mom, an awesome wife, an awesome woman, an awesome professional, I'm just awesome. And I don't care if nobody but me sees it. Which is a pretty cool feeling.

So what do I do with these realizations? For starters, I need to act on them. I don't like coffee as much as I like tea, so I need to start drinking more tea. And since I've discovered my new love of cinnamon, I should start trying teas with cinnamon flavors. I'm sure those things will lead to even more realizations.

So why am I telling you all of this? Because I want all of YOU to start down a road of self-discovery, too. Mine was unintentional, but yours can be your own doing. Start thinking about things you like or don't like. Have you been honest with yourself and others about these things? If not, you should. If it means making changes in your life, do it! I promise it will be worth it. Maybe it will lead to even more discovery, which would be so fun! Whether you are dropping things you don't like or adding things you do like, wouldn't that make life so much better?

The other reason I'm telling you this is because we all deserve to realize how awesome we are. And I want that for all of you. It will take time and it might not be easy, but you know what? It's OK.

Tuesday, April 26, 2016

Things that Remain Unsaid

I know it's been awhile since I've been able to write a new post. Most of it is because I have been working A LOT lately. And that's actually what got me thinking and sparked the idea for this post.

I work in a field that usually has men outnumbering women. And women with children tend to be even more rare, because many women feel torn between pursuing their career and having a family. This puts me in a unique position, because I am pursuing my career and I have a family. People often make assumptions about me because I have kids, and the assumptions are usually unspoken to me (or at least unspoken to my face). Anyway, this got me thinking about several blog posts other people have written about things not to say to working mothers. But there are also a lot of things that would be helpful to hear, but are often not said for whatever reason. So here is my list of things that remain unsaid, but would be helpful if actually spoken.

1. "You are doing a great job, at everything."
A working mom may hear things like, "I don't know how you do it" or "How do you manage it all?" This is nice, but I told one my coworkers once that if she was looking for advice on how to do it all, I had nothing. I do what I do because it needs to be done. And if I don't do it, whether it involves my kids or it's work related, nobody else will. A working mom may also hear, "You are a great mom." That usually comes from family members who are trying to encourage her, which is also nice to hear. But it is also nice to hear, from anyone, that she is doing a great job at everything: as a mother, at work, as a whole.

2. "When can you go out with us/have lunch with us?"
When I first started my job, I was invited out a lot but very rarely could I go out. I work days, my husband works nights and weekends, so I usually had to be home to watch the kids. So I often said no. Eventually the invitations started to wane, and then they stopped completely. I knew it was coming, but it still makes life lonely when people stop inviting you to do things. I often don't feel like part of the group and that can be hurtful. When I would try to do the inviting, I would end up with several accepting, but then usually backing out for various reasons. For example, I was supposed to have breakfast with about 6 six people one morning before work. By the time I left home are started toward the restaurant, everyone cancelled in the matter of about 30 minutes. A working mom would love to not only be invited, but also be asked when it's convenient for her to join. Even if it's just coffee, it can mean the world to her just to be included.

3. "What can I do to help you?"
Not all, but many, working moms feel overwhelmed by everything they need to do. And sometimes, things can seem so overwhelming, she doesn't even know how to ask for help. But if someone were to make an offer of help, that can open to door for her. The catch to this one: don't ask if you aren't actually willing to help. And be prepared to do what she asks. Nothing would be more harmful for her than to have someone offer her help and then renege the offer. Say it if you mean it.

4. "Let's do something that includes your kids."
A working mom is already away from her kids more than she wants to be. So if she's invited to something outside of normal work hours, she may be hesitant to accept the invitation even if she can go. It would mean a lot to suggest going somewhere that she can bring her kids with her. Going to a park, the play area at the mall, even the library where her kids can play on the computers or look at books. Even suggest her house, that way her kids have their own toys to play with and she may not have to watch them as close as she would in public. That means she can enjoy her time more.

5. "You look nice today."
A working mom is lucky to get out of the house in the morning with all of her clothes on, her hair relatively in place, maybe mascara but that's if she's lucky. It means a lot to women in general, but mom's in particular, to get compliments. A working mom especially needs them, because she may not be hearing them in other places. This is not a knock on spouses/partners; family life is hard on everyone. A working mom's partner is just as tired and stressed as she is. Hearing a compliment from someone at work could be just what she needs to brighten her day.

This is not an exhaustive list, but these are things that I know I would like to hear. I hope you are on the receiving end of one of these unspoken things. Or maybe, you can do it for someone else.

Thursday, October 15, 2015

Doing Something Right

If you are like me, you feel like you are failing at mothering all the time. I always feel like I'm not doing enough, or being enough, or creating enough hand-print art for family members. I feel like I'm not teaching enough or being present enough. But the other day, I got a wonderful reminder: no matter how "not enough" I feel, my kids are getting enough of me and from me.

A few months ago, my oldest son was having a rough day. He was just being really defiant and struggling with his behavior. I was trying to be patient, but feeling like I wasn't succeeding very well. At one point he looked at me and said, "You're weird!" Now that doesn't sound like much, but from his tone and body language I knew he was trying to hurt my feelings. So I sat down him and explained to him two things. First, trying to hurt someone else's feelings when you are upset is not a good way to handle being upset. We came up with a few ways for him to tell me when he's upset or things he can do when he's upset.

The second thing I explained was that being "weird" is not a bad thing. It just means you are different, you are unique. I wanted him to know that his insult wasn't really an insult to me, partly because if anyone ever calls him weird, I want him to be OK with that. In our house, weird is an OK thing to be. But I also wanted him to know that even if someone says something to him and means it as an insult, he doesn't have to take it that way (whether it's being weird or anything else).

I didn't think of this day much until earlier this week. I picked up my son from school and he was telling me all about his day (we call it downloading because he just let's the information fly!). He noticed that one of his classmates was behind us. His classmate was walking with his older brother. The brother was saying the he was older and in a higher grade so he was better. He was basically cutting down his brother for being younger. Just brothers bickering. My son tried to introduce me to his classmate, but his classmate was too busy with his brother. As my son turned back to talk to me, his classmate pointed at me and said, "She looks weird!"

I did not think about it at all. He was a kid trying to impress his older brother, who was trying to convince everyone within earshot that he was the better brother. That's it. I wasn't mad or upset, I just ignored it because I knew he was trying to get a rise out of either me or his brother. But he did manage to get a rise out of my son. He turned to his classmate and said, very loudly, "She's NOT weird, she's just different!"

HOLY. COW. A lesson I taught him got through. And he just defended me to his peer. I was so proud of him in that moment. He then proceeded to carry on and finish telling me about his day, as if nothing big had just happened. His reaction suggested to me that what he did was just a normal thing for him. I wondered if he had done this before; he did is so easily. When his classmate tried to talk to him again, my son just ignored him as we walked back to the car.

I can only hope that this lesson will stick with him. But I felt like I had FINALLY done something right. But you know what? I've been doing things right. For him to pick up that lesson, it wasn't just the talk we had one day a few months ago. He's been picking up on these things from the beginning. And that's a pretty awesome feeling.

Thursday, August 20, 2015

Back to School!

It's that time of year! Some of you mama's have kiddos who have already started school, some of you are like me and are still anticipating the first day of school. I am looking forward to it and I wanted to share with you why it is so exciting for me (and I promise it's not why you think!).

Before I start talking about this year, I need to give a little bit of history. I am a self-proclaimed nerd and people who know me know that I LOVED school. I always have, which is probably why I am still in school. Anyway, for me it wasn't (and never has been) about getting new school supplies, new clothes, and moving to a new classroom. That was part of it, but it was also about the promise of everything I had to learn. I was always so excited about what knowledge was to be had that year, what I was going to know at the end of the year that I didn't know at the beginning. I didn't always know how to articulate that, but I understand it now.

My oldest son is starting kindergarten this year. So it's not really back to school for us, it's starting school. I know that for a lot of mama's the first day of kindergarten is bittersweet. It's a reminder that our children are growing up, that they won't need us forever. Maybe I'm a little bit different, but I am not sad. I am SO excited for what this means for him. He has so much to learn and he is so excited about learning. He is so curious and soaks up information like a sponge. He is going to be in a place with other kiddos who are the same way and will have a teacher who will be able to help him learn. 

I do have concerns about him making friends, I have concerns about the education he will get. I have concerns about bullying, whether he is the bully or the bullied. I am concerned that I have not prepared him enough. But if I feed into those concerns, it will eat me alive. It may even impact him and I don't want that to happen. If problems occur, and no doubt they will, we will have to address them one at a time. 

So for all of you mama's who are sending kiddos off to school, for the first time or the last, it's OK. As long as they know that you love them, they will be just fine.