My speech about autism and my son, given at UUFG today

This is my speech as I originally wrote it. It was edited down a bit for the speech in the service today, but I like it as I wrote it so I’m going to publish that version. If you are from UUFG and you are reading this, thank you so much for your kindness and care for our family and for letting me have an opportunity to talk to you about my son and autism.

Hi Everyone! First I’d like to introduce myself to you all, in case you don’t know me or you are a visitor today. My name is Meg Jobes and I am a mom of 4 extraordinary people. I’ve been a member here for a bout a year now.  The reason I am talking to you today is that my little son, Elijah, has Autism.

 

I just found out last month that now 1 in 88 children is being diagnosed with autism. Yet, so many other people have no idea what that means now, or why it’s going up so dramatically. Well, it’s going up so dramatically because every year we understand more about this disorder and what it really is. Many things that we used in the past to classify children with special needs are really no longer being used or are being correctly diagnosed as autism. An example of this is mental retardation. Most kids with autism are not actually mentally retarded, they just think differently and learn differently than other kids. They are not the rain man or savants in general, but they do take longer to show their skills in some areas. Elijah could “read” when he was just a baby, this is known as hyperlexia. What he was really doing was memorizing all his books.

 

So, what the heck IS autism?  Autism Spectrum Disorder is basically an inability to understand social rules, sometimes an inability to verbalize, and seems to contain another disorder as part of it known as Sensory Processing Disorder, or Sensory Integration Disorder. In other words, there’s a lot going on with these kids, and it’s different for each and every one of them, but they have a few things in common. In Eli’s case, he cannot understand how to do basic things like read an expression on a face and assess what the person might be feeling at that time. I might feel angry, but it is impossible for him to understand the look on my face or the tone of my voice as angry.

 

He’s a sweet guy, my son.  But because he senses the world in a completely different way than you and I do, he doesn’t act the same way. When he’s sitting here in the congregation, he might find the lights too bright, or the noises too loud or too soft. He might feel the air is strange on his skin or that the smell in the air is unbearable. He can’t express his thoughts and feelings like others. He is lucky if he can manage to use words to ask for help or to tell me he needs the bathroom. He has developmental delays so that he may look 9 years old, but he acts anywhere from 2 to 9 years old, depending on the situation.  He is not undisciplined or intentionally trying to disrupt or be annoying, he simply cannot control the way his senses process information so sometimes he jerks or claps or makes a noise so he can cope with the environment better. Imagine sitting in your chair and an overwhelming light envelops you while discordant noises assault your ears and funny smells assault your nose all at the same time. So you clap, because that can make you focus on only the clap and not the overwhelming amount of information coming in. That’s what we think he and other children with autism are going through every day.

 

You know what? Eli wants to be here. He asks to come. Some vibe in the air, some feeling of normal he gets here makes him want to be here, despite how hard it can be.

 

Lastly, I want to give you guys an idea. We talk a lot in our fellowship about diversity. We’d like diversity of religion, race, emotions, you name it. But we haven’t talked about neurodiversity. This is a concept where we realize that everyone has a different brain, and it works differently than ours. My other children would be called neurotypical because their brains work the way we expect them to, at least for now. Who knows if any one of them will be assailed with challenges such as depression or adhd? All of these are things that we know makes our brain just a little different than typical. Well, autistic persons have different brains. We have yet to understand all the strange and unusual ways their brains work, and how to utilize this in our future, but the fact is, 1 in 88 children are currently being diagnosed with a form of Autistic Spectrum Disorder and we, as a society, are going to have to figure out how to make those kids a part of an adult world that doesn’t work for them right now. Definitely something to think about. For our congregation, and others in the world, we need to look at any person with understanding and acceptance and strive to understand who they are. Eli is autistic. I learn from him every day, and I hope that you can learn from him, too. Understand that little boy or girl who cannot sit still, who seems to be the biggest brat you ever saw, may be facing challenges you can’t see. He or she may look like other children, but she isn’t like other children. Her parents are probably exhausted, stressed, scared, embarrassed and ashamed. But they are also proud, loving and stronger than almost anyone.

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What happens when you invite emotions to stay a while…

 

 

I’m not sure it’s OK to spend so much time processing. But, I have tried to listen to myself and honor myself and give myself empathy.

 

Weirdly, I have been watching Glee, the first season on Netflix. This show began around the same time that my X left me. Well, it started just before, but he hated it, so I barely enjoyed it. Then he left, and Glee was the way to express my pain. Every song was like a way for me to cry.

 

So, here I sit, watching season 1 over again, and I am still crying at those songs, only I’m not nearly as upset as I was, it’s more like memory crying. It’s helping me remember the real pain I was going through, and to give myself empathy for that pain. I don’t think my X will ever understand love, and what it really is. I’m not sure I do, but I sure loved who I thought he was. And I was crushed when I found out he wasn’t that person. I really wanted him to be that person. I wanted him to be the man I loved, with all my heart.

 

2 years later, I know he wasn’t that person. I loved an illusion. He is still pretty messed up and still probably lies about me and who he perceives me to be. But, I don’t really care anymore. Or, rather, it’s the only thing left that bothers me, if I’m going to be honest. I wish, often, that I’d like to talk to the girlfriend and his friends that he’s made, so they will know who I am. I’ve been coming to an acceptance that will never happen the way I imagine it. In the spirit of inviting my feelings in, I’ve been exploring those feelings. I talk to these women in my head, K and E, and tell them my side. I agree that this is stupid and a waste of time, but I am honoring this need and conducting these talks as if they were really happening, so I can process it and get over it. It goes like this:

 

K: So, I want to know why your marriage didn’t work out, he’s such a great guy, we’re amazing friends and I really don’t get how you can let a guy like that go.

Me: Well, there’s more to the story. I am not sure what he has told you about me.

K: It’s not important. He says he felt unloved all the time.

Me: I highly doubt that since he never tried. He just kept finding other relationships instead of actually talking to me about his issues. He cheated and blamed me for it. Bottom line.

K: Well, I agree that married people shouldn’t cheat but..

Me: But what? Would you have dated him knowing he was married and living at home? Apparently lots of women will do that. I guess men, too, what do I know? All I know is I was doing my very best and going through a LOT of crises, but instead of being there for me, he was fucking other people. Nothing pretty or good about that, and there is NO excuse for it. I am not telling you he is a bad person. I won’t say that. I am telling you what happened. One day I caught him again, and he left, saying that he chose to leave anyway. He said he was in love with her and he left. He told my daughter she’d like it better there and she could go with him!! He and I said a lot of nasty things, too. My daughter is still pretty traumatized.

K: But why did he cheat so often. What did you do that made him?

Me: You don’t make choices for other people. I was not to blame for what he did. He chose to find other women through our whole marriage rather than actually be with me. He has a pattern. He sleeps with someone and decides he is in love with them. When the flush of new wears off, he gets sick of it and realizes he’s not in love. The only reason I lasted is because I had his children in a vain attempt to keep him. I should have known when I asked him early on if he’d leave me if I didn’t get pregnant and he didn’t really answer it. He would have. The charm had worn off, but he wanted children more than me. So he was willing to get those kids at the price of my happiness, and his own.

K: So, he says you kept seeing each other for months afterward.

Me: We were both very confused. I wanted him to love me, but he wanted sex.

K: So he used you? That isn’t like him.

Me: Yeah, actually, it is like him. That is him. He uses and leaves. E is doing the right thing, not getting more involved or living with him. I think if she did, he’d sleep with other women.

K: He’s a great friend though. He’s so good to me and the kids.

Me: I’m sure he is. I am not telling you anything but what you wanted to know. He asked me once if we could be friends. I decided we can’t be. Maybe when the kids are grown up we can get along, but I am not interested in being friends with anyone who could cheat on his wife and walk away from children who needed a family, most especially Eli. So as good as he might be as a friend to you, he was not a good friend to me and he hurt our children so much, and me so much. He was cold, heartless and mean. And he hates to know that about himself, but what he did makes me never want him as a friend. It would be one thing to realize after trying and counseling that your relationship is not working, but to fuck other people, tell them you loved them, etc, and knowingly leaving your children who need you, especially your autistic kid. It just makes him scum in my book. I’m glad he has friends, and I don’t begrudge you that relationship, but I can’t be and will never be a friend to a person like him.

 

I know, it’s not a real conversation, and it will never happen. But for now, it satisfies a part of me to tlak that out. I can fulfill a wish without actually hurting anyone and help to heal myself

 

K nor E will ever ask me. They think I’m the bad guy, and that’s OK. My children will prove that I’m not a bad person in any way. If they’d like to talk to me someday, fine. If they never do, fine too. It does bother me that a friend of his that I was once friends with too, thinks there is something wrong with me, but you know what? Again, not my issue..she doesn’t have to like me for me to like myself. This is a very important thing for me to get. It’s OK to honor my feelings of wishing to impart the information from my side. I know that it would not help anything to do so, and no one needs me stepping in and telling them how life is. They can live their own, and I will live mine. I’ll figure this out.

 

I invited the feeling in, I have been playing with it all. It does indeed help.

I like taking care of these emotions, it clears stuff out, it makes me more open to the world again and a lot less sitting inside myself freaking out about not being able to talk to these people and defend myself some how. I don’t need to, really. I just need to work it out for myself and get past things. It frustrates me at times that it takes me so very long to work through things, but you know what? I’m doing that instead of pushing it aside and moving on with all my baggage.

 

The other thing that I had to invite in this week is my feeling of resentment that men can walk away from their kids at age 47 or whatever, and have NO problems finding a relationship because they don’t spend all that much time with their kids. Most women don’t really mind a couple of young kids because they know that they don’t have to parent them or even see them if they don’t want to. But this is not the case for me. I’m 46, fat, and I have young kids, one of whom has autism so won’t be moving out, ever. Men at my age don’t want to date me. I have too much baggage (this term bugs me too..they are children). A man believes that I wouldn’t have time for him, plus they barely look at a woman who is fat in the first place, not to mention that my autistic kid is intimidating to them. I don’t look at dating as a commitment, but I don’t really know how men see it. I may be totally wrong about this since I haven’t really tried to date for a long while, though.

 

Luckily, I don’t want to date right now. Every so often I wish I could be held and rocked a bit when I am emotional, but I’m not really in a place where dating would work for me…I still have work to do on who I am and where I want to go and I’m not altogether sure how to date since I spend 80 percent of my time with my kids. I don’t know much, huh? Oh well!! I am learning to live happy alone. I think this is a necessary skill everyone should learn. I wish I had when I was younger, but better late than never!

 

So that’s the result of letting those feelings in and hanging out with them.  You should try it sometime!

Where have I been??

Hi everyone! If you are reading this, thank you for coming around. I have had a lot of changes since October and this project of my life and so on completely got away from me.

So, here’s a short post with a longer one to come later on some musings about autism and my son, what it is to be single and love it, and other daily struggles. I’m also working on myself by taking a course in Non Violent Communication and going to meetings to help me cope with codependency issues. I feel like I’ve done a LOT of healing in the last several months, but Its been a long journey so I will talk a lot more about it when the kids aren’t interrupting me every 5 minutes!

Thanks for coming and I will post tomorrow!

World Autism Day…Lighting your home Blue

Usually I talk about myself on here, and sometimes I talk about my children. Today, I want to talk about the central issue in my life, Autism.

On days like today, I am brought to full awareness of just how different my son is compared to “typical” children his age. Today was the day of the IEP meeting we have every year (or more if needed) to address my son’s educational needs over the next year. Today we got a little of what we wanted, while realizing that Eli still has a very long way to go to do some things. I wonder if he’ll ever get there, and I think to myself, every time, “How necessary is it to have good reading comprehension and live in society?” Well, obviously you have to know what things mean, not just how to read them. You have to be able to pick up a bar of soap and know that you are supposed to use that to wash yourself. You have to be able to understand directions to learn how to drive. I’m sure there are other things, but it does occur to me that he can be taught without reading comprehension, up to a point. He can be taught to drive, but he can’t be taught to pick the right answers on the written test, he’ll have to read and decide.

So, today I read a fellow blogger’s letter to the President, asking for his support of World Autism Awareness day and the campaign to light everything blue that night. The day is April 2nd. I will go out and buy a blue light or two and do what I can on a home level, and maybe I’ll get to tell a few people why my porch light is suddenly blue, but her point is, if the White House joins in, maybe we can foster more awareness and education so that you, the general public, does not dismiss my amazing child as unteachable or weird. He is not the same as you, and he never will be. He is not like your 8 year old child, and he never will be. But, he will need to live along side your 8 year old child someday in an adult world. He will need to contribute something to society. He might not be a lawyer or a truck driver. He might be a musician, he might work with computers or numbers in some way, I can’t answer that right now, but he will be there somehow, and all of us in our world will have to cope with the 1 in 11o ADULTS who will have an autism spectrum disorder. Every year this number is going up, it is already a significant minority.

So, be aware, light a light blue and tell them about your friend who has an autistic kid and is raising him to be a member of this great land. Your friend took “challenges”, looked them in the eye and found strengths and did not let the world shove her kid aside, any more than any parent would allow their typical child to be bullied or shoved aside by the world.

Let’s take that day to remember, we need to move toward an awareness that this will be a neurodiverse world, and maybe that is what evolution demands! We need to change the classrooms, the work environments, etc, in order to adapt to this coming world. We need to start now, with simple awareness that can lead to research, funding and programming that is designed to help our world grow the way it needs to, toward acceptance of individuality and finding ways to fit all members into our society.

I hope you wrote, light my house blue, on your calendar, or at least World Autism Awareness Day. April 2nd, 2011.

Reflections on Neurodiversity

My little man

Here you see my little boy, Elijah. He is autistic, or on the autism spectrum, whatever you’d choose to say. Sometimes Eli doesn’t like to talk. Sometimes Eli will say one thing over and over. He is unique in his communication style, for sure. He is a really special, really interesting person whose brain just happens to work differently than mine.

Today, there are some 1 in 150 children diagnosed with autism. 1 in 97 little boys. It’s not an easy thing for the parents of a child with autism, there are lots more challenges, but there are lots more rewards. How many of us can get really excited over their child looking at them and saying, “Hi Mommy” spontaneously when he is 8 years old. It makes us rush with love and pride every time they do something new, because we know how hard it is for them to do it.

So this week, I’ve been reading a book entitled Neurodiversity by Thomas Armstrong, PhD. This book is a call out for all of us to look at people who are different in the brain from us neurotypical folks (though to me an argument can be made for the individuality of ALL brains) and start accepting them as they are and start finding ways to play to their strengths and find new ways to fit them into our already complex society.

For me, all people are individuals, so this is not a complicated idea, it seems like a very logical idea. But what happens to us as parents when our child is diagnosed with a “disorder” is we emotionally lose it. Every hope and dream you had for your child is dashed to the ground and it takes time to figure out new dreams and new hopes, time to figure out what we can do to help our child live in a world that is almost foreign to him and help our child become a fully functioning member of our modern society.

Well, I don’t have all the answers for that, but I do agree that rather than focussing always on the negative, I do focus on the positive and interesting when it comes to my son.

He is more loving than most children, because he likes deep, heavy touch and so is always wanting to be hugged and massaged. For some, this might not translate to love and affection, but for me, it surely does. I love being able to cuddle my 8 year old son, I even love massaging his feet at night so he can relax and go to sleep.

He can concentrate for hours on one thing, even if it’s something that I might consider useless or silly, it’s a skill that we can figure out how to exploit or encourage so that he can find work as an adult.

He is very talented musically and so I want to encourage more instrument play, though his singing is angelic.

I think sometimes his vision is such that he sees more detail, more things that our generalizing brains miss. There has to be ways we can use that skill in his future.

I do choose to see the positives in my son. I think he’s an amazing person. I can have a whole conversation with him on the angel he says he has. (Yes, this may sound crazy to you, but Eli tells me he has an angel, and it’s flying around). We can meet most of his immediate needs and he can take care of himself rather well now.

I like to enter his world sometimes and just play with him, just be with his sweet energy and enjoy who he is without worrying about anything else but living in the moments of joy with him. He radiates joy when he’s happy and he breaks your heart when he is sad. (He does identify emotions in himself, too)

I think he’s overly empathetic. In the past, it’s been thought that autists tend to not be empathetic at all, but recently it’s been postulated that autistic kids may feel TOO much empathy which causes them to shut people off so they can cope. I believe this is my son. When I am crying, he comes and talks to me and asks me if I’m OK. He wipes the tears away while saying “Sad, Sad, Crying”, he’ll let me hug him. He is very concerned with me feeling badly..he’ll ask if I am broken. It’s so sweet, the look in his eyes, though, it’s all concern, it’s all, “I don’t know what to do to make my mommy smile again, but I have to try”. Tell me this kid isn’t empathetic! When I’m sick, he’ll want to lay next to me in bed and do silly things to cheer me up.

I believe in neurodiversity. I believe we need to find ways to adapt to the society we’re all becoming with so many children diagnosed with ADHD, Autism, and other brain issues like dyslexia and related learning disabilities and other mental illnesses. I believe we need to see the positive, we need to see the individual child or adult and find ways to help them play to their strengths so our society as a whole can evolve into an inclusion society. Where all people are valued for who they are as individuals and not for the colors of their skin or the functions of their brains.

I love my son more than the sky and the stars and the moon, more than anything. I feel this way about all my children and I’m sure I’ll write more about each of them, but because of this book, Eli is on my mind. I hope you will also see the value of finding a way for kids like Eli to fit in to our world. He’s pretty special.