Tuesday, February 1, 2011

I Like Talkin' About You You You You Usually, But Occasionally I Wanna Talk About Me (what I think, what I like, what I know, what I want, what I see..... a nod to my country roots)

Sounds like a post all about me, right? Nope, HA! I gotcha! In the end you will find that its a post about you too!!!! The title is a nod to my country, mid-western upbringing and if you don't recognize the refrain it's a country song by Toby Keith. Going back to the day I found out Cameron had Autism, sitting in the office and listening to the Psychologist give us his report then getting a second opinion locally and a third opinion in Baltimore there were some commonalities between all three doctors. Allow me to paraphrase, abbreviate and combine the general points they were trying to get across to me here: 

Your son has Autism, it has no known cause and no known cure. The rate of Autism is skyrocketing but no one knows why so there is no one and nothing to blame. Early Intervention is key, you've caught it early and we don't know how far he can go but be prepared, he may never talk, he may never have friends, he may never give affection and he may never be able to be alone. You will need to find therapists X, Y & Z to help him though Early Intervention, he will need special education, you will need respite from him and you will need to form a support circle for which to lean on. Ready, Set, GO! 

 And we took off at a sprint. Rob set to work making sure his current job was paying the maximum amount in his field and had the benefits we needed. It did thankfully, or he would have been job hunting. I started reading, reading, reading, calling speech therapists, OTs, special programs, scheduling our lives to the minute and getting irrationally and extremely frustrated when I didn't get call backs within hours or when I realized how few groups working with Autism actually took insurance. We spent our days going to therapies and groups, we spent our nights reading about Autism and working on the budget and calendar. What could we do to make more money, pay for more therapies, stream line the schedule, read faster, remember more, learn more, run faster, sprint, sprint, sprint. 

Here are some truths for you to do with what you wish. Autism is a marathon, not a sprint. Every book and doctor counter acts another book or doctor but no one book or doctor knows your specific needs and wants for your child. You will get burnt out. You will hate Autism. You will probably never think you are doing enough but hopefully you will know somewhere in the recesses of your brain that you are doing as much as you can and thats okay! Someone will ask you a question about your child that you cannot answer. You will get tired. Your desk will get messy and you will lose a piece of paper that is very important. You will value the gift of a new watch or smart phone far more than a diamond necklace (although it would be nice!). You will need a break and eventually you will learn how to take one. I could go on forever. Instead I want to offer advice to go along with these truths. Take the pieces you need and leave what you don't for others, either way I hope this is helpful.

On Acceptance of Autism: If you've gotten your diagnosis in the last year or so you haven't even had two seconds to think about accepting the diagnosis. It became fact and you react. Unbeknownst to you there is a cycle you are probably repeating, it is a cycle I didn't myself understand until our diagnosis was years old-- The Kubler-Ross model, commonly known as the five stages of grief. When I first thought about it I thought, "no way! I'm not grieving!" I may not have been grieving in the literal sense but I certainly was going through the cycles again and again, I'm sorry to have to tell you that even now the cycle repeats itself. But here's the key, the stage of acceptance grows longer. Initially I may have went through the 5 stages in a day or even a couple times a day. Seven (almost 8) years later, I'm up to going through the cycle every couple of weeks. It doesn't sound like much but its way better than what it was. (1) Denial: not believing the diagnosis, thinking he will grow out of it, using your strongest belief that you can make it go away if you work hard enough. (2) Anger: Autism sucks! I hate that we have to do X,Y,Z! Why do we have to deal with Autism when Suzie down the street doesn't even have to think about it? If it would just go away, our lives would be perfect. (3) Bargaining: If I read this book it will have the answers. If I change this, this and this it will be a miracle. I'm going to Google "Autism" today, I did it yesterday but there has to be something new today. (4) Depression: *sigh* nothing is working, nothing is ever going to work, I just wasted a day, month, year, on a pipe dream. How could I have wasted that time when I could have been doing something else for him? Why bother? (5) Acceptance: Someone once asked me if I could give Cameron or Adam a pill to take away Autism, would I give it to them. The answer is NO and that is my acceptance of Autism. Autism is a fundamental part of who they are and denying that part of them is denying their true self. Would taking away his Autism also take away Cam's quirky sense on humor? His love of music? How about Adam's drive to work on one thing until he has it perfect? I couldn't do that to them. Your acceptance will read differently and it should. 

On Marriage: There's a boy in my bed. I'm not talking about Cameron or Adam either! His name is Rob and he is in. my. bed! He's my husband? Oh! Yes, now I remember! The man I chose to spend the rest of my life with, the father of my children, now I remember. Yep, it happened to me. Did it happen to you? Is it happening to you? After our diagnosis he took off in one direction, his blinders focused on making money for therapies and keeping insurance. Overtime? Travel for work? Yes sir! I took off in another direction, nose in an Autism book, life scheduled to the minute, driving all over Maryland, learning, focusing, working, all my attention on Autism, on Cameron, on my newborn Adam. Then *BLINK* it's 2008 and we've been married 10 years, Cameron is 6 and Adam is 4, Rob travels for work about 50% of the time and you know what? I miss him. I was so wrapped up in my boys, standing strong against Autism, standing up for the boys' needs at school and within the community, being there 100% of the time for whatever needs arose at school and at home. I was tired. I needed someone to lean on but I had stood strong for so long, I didn't know where to turn to. Then I remembered, there's a boy in my bed. It was as simple as just being in the kitchen and leaning my head on his shoulder. He was there  and he caught me. He has never missed, catches me every single time I need to lean. What I didn't realize was that he needed to be needed. I had been standing so strong for so long that I had cut him out, I kept him up to date but I didn't share the emotions with him. So I was running around going through the grieving cycle, he is running around going through the grieving cycle and neither of us thought to stop and take second for a quick lean, a quick connection, a hug, a deep breath. We don't go through the cycle at the same rate or at the same time. Believe me it is an ugly time when we both accidentally hit the same stage at the same time and within the same state. Two people angry at Autism in the same home is never, ever a pretty sight!  

On the Care and Keeping of Mommy- Part 1: Someone told me I had to take care of myself. HA! It is but to laugh and I did. And I do. I do not have time to laze around and eat bon bons! Neither do you. But when I hit our 10 year anniversary I did make a big change in the care and keeping of myself. We went on a trip. Yep! We left the boys with my parents and because of all of Rob's traveling we went First Class to Las Vegas for a few days. Here's what I learned on that trip: (1) I not only love my husband but I like him (2) I like to read things other than Autism books (3) The boys needed a break from us and from the schedule just as much as we did (4) The trip was more of a vacation away from Autism than it was of a vacation from the boys. We missed the boys terribly, we thought about them constantly but we did not think about Autism-- not once. I have taken these lessons and expanded on them in the last 3 years and here is what I've kept with me. I like my husband and I want him to be happy and I want to think of ways to make him happy. Thinking about him is sometimes the break I need away from thinking about the boys and the diagnosis. I love to read, I love happy endings, not every book has to great literature and a lot can be said for smut. There is a reason romance books outsell all other books 5 to1. It doesn't matter what you read as long as you enjoy it. Words printed on a page is a wonderful way to escape for a few minutes and books (ebooks, audio books, etc) is probably the easiest thing you can keep with you for a break in waiting rooms, to relax before bed, to take a few minutes to yourself-- you can read anywhere and anything you read will give you something you didn't have before. 

On the Care and Keeping of Mommy- Part 2: Make appointments for yourself and keep them. Make your annual appointment, check the plumbing, do the lab work and take care of the follow-ups. When I turned 30 my one annual appointment spawned 7 follow up appointments: the lab, the neurologist, the dentist, the psychologist, the sonographer, the dermatologist, the chiropractor. I neglected myself and my doctor listened to my list of complaints and sent me out for follow-ups. She suspected that I was low in Vitamin D, needed treatment for migraines, was suffering from stress and anxiety, had gall stones, getting rosacea and holding all my stress in my neck and shoulders. She was mostly correct, ok she was dead on right for damn near everything. In the last 5 years I have been treated and released for migraines, I still get them but not as often now that I get regular adjustments by my chiropractor. She helps me release the tension from my neck and shoulders. More recently I also schedule 30 minute massages every few months to work out the knots even further. My dermatologist did diagnose me with Rosacea and it is complicated by stress, when my stress level gets too high you can read it all over my face-- literally. I had my gall bladder out because it was beyond repair. I was low in Vitamin D and I have to take extra every day. I did go to the psychologist, quit, found a new one, quit, and found a new one. I took pharmaceuticals for stress and anxiety that put me to sleep for months, then added in medication for depression that did nothing. I was mis-diagnosed and only recently found out that I do not have stress, anxiety or depression, I have Attention Deficit Disorder. Really? Yep! Shocked the heck outta me too! Apparently I could control my ADD when faced with typical stressors but when you add in a traveling husband, two boys with Autism and everything that comes with it I get so overwhelmed that I cannot function. I still see my psychologist for what I call my "sanity checks", she helped me figure out that I had ADD and now she is helping me through the medication trial that goes with it. So far Adderall has got me back on track and I'm accomplishing more than "Autism stuff" for the first time in years. 

Okay. So I never intended this post to go on forever! It probably should have been many different posts and in talking all about myself I am hoping that I was also talking about you too. Hopefully you found yourself nodding, smiling and even laughing a bit while reading this way way too long post. And hopefully you will remember occasionally to think of yourself a bit, your journey, your leaning post, your interests, your knowledge. Sing a long with me.......

I wanna talk about me 
Wanna talk about I

Wanna talk about number one
Oh my me my 
What I think, what I like, what I know, what I want, what I see
I like talking about you you you you, usually, but occasionally 
I wanna talk about meeeeee
I wanna talk about me 


  1. My name is "The Husband" and I approve this message.

  2. with each of your blogs I understand more and more. you are so amazing Love you

  3. wow, been there, you put all of it well. different for us all by a little bit but even more the same - and only a parent of kiddo with autism understands that statement! good luck jorja

  4. This is a great post, Maggie. Thanks for sharing!