Gratituesday: Thankful J and Days Like These

Photo property of Dottie's Life at Home

He's known as J, J Man, and Baby Bear. He's the reason for much of the joy and the frustration that I blog about. This handsome (if I do say so myself) young man in dire need of a hair cut is my son. Nearly 20 years ago I gave birth to him three days after his dad came home on leave. The past twenty years have gone by so quickly! 

  Eye contact is something he still doesn't want to give very often, but he will for family and close friends. J's favorite things these days include terrorizing the cats, listening to music (faves include hymns, the Beatles and Michael Jackson, but he listens quite avidly to many genres), and eating. He also likes helping out around the house a little. Mostly he just enjoys life. 

    J has a winning smile and he is a delight when he's in a good mood.He has meltdowns of course, which goes hand in hand with autism, and they take a toll on everyone's nerves, including his. But truly, for the most part he's a happy young man. 

   We've gotten into a routine lately, listening to music each day after Dad leaves for work. J isn't about to let me slack on that! Each session starts with Yellow Submarine. That seems to be his all time favorite song. He likes it when I sing along. I don't sing very well, but he doesn't mind. 

  This evening after I thought he'd gone to bed, he came quietly into the living room to be with me. He gave great eye contact and appropriately signed "eat". No loud shrieks to get my attention. No sneaking to get what he wanted (although I did later see teeth marks on a kiwi). He even led me to the kitchen.  Now, who could resist that? He got the cheese he wanted and went on to bed. Granted, he's not asleep yet as I write this. I can hear him in his room talking. That's his normal routine. He'll talk and sing, and sometimes giggle uproariously until he's ready to sleep. As for me, I'll stay up, listening to him until he falls asleep or I just can't stay awake any longer, whichever comes first. Usually by the time I'm ready for bed, Dad is home from work and will be happy to be up with him for as long as it takes. 

   This Wednesday we will celebrate his birthday, most likely by taking him out to dinner. If we go in one direction we'll be heading to Bible study at our home church. If we are in the other direction, we'll pop in for Bible study with family and friends. He will be happy either way I think. 

  And as you can tell, this week I am thankful for my young man, and thankful that the last few days have been nothing like the rough patch we had last week. I'm very thankful to have been blessed with our J Man.

  What are you thankful for today? If you have a blog,         Join us for Gratituesday at Heavenly Homemakers! Even if you don't, leave a comment here. I love hearing from you! And take some time to read the posts from Heavenly Homemakers, and the other blogs linked up today.

Gratituesday: The Eye of An Artist

This one's going to be short and sweet because I need to be dashing out the door, but I couldn't resist. Join us for Gratituesday at Heavenly Homemakers!

The above photos were taken by the artist who made these pieces. She happens to be multi talented: she sews her own creations, makes jewelry, has hand made cards, tried her hand at sketching and drawing, just to name a few. I am privelaged to see many of her things because she's my sister, Kathleen Sweeny. 
  My absolute favorite artist is our own Creator, God. Not only did he create us, he formed the earth itself and all in and on it. If you look at nature, you can see beauty all around you. I think artists inherited that from the Lord, because they see beauty in things, and they see possibility where others might miss. I like to think God sees the possibilities in all of us that others, including ourselves might miss.  
  Had to brag on her a little today. I'm thankful not just because she's so talented and consistently inspires me to cultivate my own creativity, but because she's my sister and friend. Thank you for being one who points out beauty in life. 

One Tough Decision: Does He Stay with Us or Go to a Home?

`I really did not want to write today, but yesterday I made a promise to myself. I made up my mind to write something every day, for 30 days. And let's face it, writing is cathartic. You can get all your thoughts and feelings and plans down on paper, all your emotions. You can write letters to people who intrigue you, bedevil you, anger you,  help you. You can simply write lists or fill the page with stuff that only you understand. Then you can hit send, hit delete, mail it, destroy it. I love having that power.
  While I will be writing every day, I don't know that all of it will end up being published to read. My goal is still two to three posts a week, and I've yet to meet that on a consistent basis lately. I'm working on it though.  I have a lot to say about life. I have way too much to say about autism. 
  Yup, still on that kick so far. I'm at a point of frustration at myself because there are days like today that I don't know which end is up. I know there are parents who deal with the negative aspects of autism on a regular basis like I do so when I talk about my experiences and thoughts, I want to be honest. 
  My son isn't always loving and sweet and kind. For whatever reason, he lashes out. He had a sonogram today to check his liver and within the next few weeks he will see a gastroenterologist. Somewhere along either of those two lines is the reason for his tummy issues. While I think that part of the problem is he has turned some of it into a "stim" (self stimulation, in short, a tic that a person does out of habit or as a way of calming or lessening self boredom), there is a medical reason behind the majority of it. The belching and the vomiting gets on his own nerves I'm sure, because he gets angry quite easily the regurgitation. 
  I know he goes through a lot, but sometimes I reach my own breaking point. While he does not get violent every day or for long when it  happens, it's wearing on the nerves. I hurt for him inside because I desperately want to fix whatever it is that is bothering him, frustrated because sometimes I just can't. I worry that one day he will progress beyond hitting or biting, and harm himself, or me. I'm a big girl, but he's a lot stronger than I am. 
  It's during bad rages that I begin wondering, Should I find a group home or a hospital/school in which to place him? It's not an easy decision, especially when you have two soft hearted parents and well meaning family who love to give advice on the matter. Most of the advice is, Don't do it. 
   As parents, we want to take care of him no matter what. At the same time he can over power me and can currently give his Dad a good run for his money. It's during the rages that i sometimes think, That's it. We have to place him somewhere. Afterward, when he's calm, I'm right back to thinking, nah. It'll be okay. And I'm good for awhile.
   I'm at a stand still for now. I've prayed about it, our church family prays for our wisdom in caring for J. We've talked about it all, my husband and I, on several occasions. While one or the other of us has at one time or another been for placing him in a home, the other shies away. At this point, neither of us is ready to commit to having J anywhere but with us. Until we both agree, we continue on. 
   One day we may have to go ahead and make that decision, once and for all. Neither of us is looking forward to it. It's not like we would find a place for him and then forget he ever existed. That would never happen. We would visit, bring him home at times, continue to care. So why does a decision like this have to be so hard?       

Some of What You (N)Ever Wanted to Know About Autism

One of the main reasons I decided to blog, besides trying to train myself to write each day (that's the goal, anyway), was to have a place to talk about autism. I have avoided discussing autism much lately because sometimes it's just so darn stressful! And no one wants to be around a gloomy gus all the time, right? Well, it's time I bring autism back to the front burner again. I feel like I'm doing myself and possibly others a disservice if I don't discuss this. And frankly, I need the outlet. 
  For those who don't know much about life with autism, sometimes it can be a lot like living on an island with very few inhabitants. You can see the main land, and you see the people there. Yes, there is a way of getting across, but there is also an invisible barrier keeping you from getting across. Don't get me wrong, I love my son dearly. I always have, always will. It's the autism I have a problem with because while people may understand autism when you have a young child, most people have a harder time wrapping their minds around the fact that autism is not a disability that goes away when you hit a magic age.  For most if not all children diagnosed with autism, it's something that is still there when they become an adult. That's what I have: a young adult son with moderate to severe autism. 
  He has very little speech. Most words he does say is echolalia, or parroting what he has heard before. You have to listen fairly carefully most times to understand what he says, because to him it's like learning a foreign language. Personally, i think he has a slight hearing problem, but diagnosing that is difficult. He has this habit of figuring out the pattern of the test and then tuning out.  Translation in J-ese: I heard the beep the first 5 times, I get it, leave me alone.
  Typically, with words he knows, part of the word is left out, but he gets his point across. When he's hungry he says "Eee! (eat!) or "Foo" (food.) If that doesn't get your attention enough, he signs "eat" as well. Rather sharply. 
  Age doesn't stop the melt downs. Not even close. If he is too tired, too hungry, too anxious, or he just plain is bothered by something we can't figure out, he can melt down. Yes, sometimes it does get violent, as in he can hurt himself or use his teeth on others. The big trick is for his Dad and me not to get over excited and exacerbate the situation. If you're around J and he is agitated, stay calm. Don't stare, it only frustrates him and me more. This is also not the time to ask questions. Move back a bit. Use a normal tone of voice and please do not give advice at this time because it will not go well. 
   Most of the time in public, Dad is with him and can get him to a quieter place fairly easily. He seems to know how to get J to calm down a lot better than I can most times. One big thing to remember: The melt downs don't happen every day. Are they predictable? Not really, but they are more likely to happen if he's off his schedule, it's been a few hours since he last ate, or he's in pain. A melt down he had this morning was caused because his schedule was not followed. We tend to arrive at worship after morning bible class has ended. His normal routine is to go into the younger class room and play with the bead toy, and maybe the top, then he goes into the auditorium to sit with Dad and me. On the way out, he stops at the class room one more time to play with the bead toy again. This morning he missed his chance to go in first thing because we showed up at church in the midst of bible study. He was apparently highly offended that we would not allow him in that room. 
   Yes, he absolutely could use a hair cut and a beard trim. The trick is actually letting anyone near enough to do anything with his hair. He has sensitivities that drive him crazy. He does not like people washing or cutting his hair, either with scissors or a razor. Dad is allowed to cut his hair, but it takes quite a bit to actually get it done. It's about like trying to put make up on Tigger. He may actually let you do it, he's just not going to stand still long enough to get the job done. 
   He likes locking doors. That is one way he feels safe in this world. It's something he automatically does and it's not going away so we work with it. Only two doors he leaves alone; the church door and the car's front passenger side door. All other doors are fair game. When someone wants in, all you have to do is say J, unlock the door please, and he will. Most of the time. If you see him stop near a door, it's because he wants to be sure that it will close. It's just part of what makes J unique.
   He has a zest for life. Yes, he's quiet and rarely looks people in the eye unless he knows and trusts you. Even then he may not always give eye contact. But in his element he giggles, shrieks, laughs. He gives hugs sometimes. He is noisy, but he enjoys his life. 
   The things I've discussed about J is and is not unique to a child or adult with autism. If you've seen one person with autism, you've seen one person with autism. There are so many varying degrees of the disorder, so many quirks and issues that can be part of it. Some may talk your ear off about baseball, chess, drawing, whatever catches their attention. Some may have to line up everything, some you would never know they are on the spectrum unless someone told you, others are so tightly locked inside their own world they cannot be reached. Yet. There is always hope though.  
  All these things I mention about J and autism in general barely scratch the surface. There is so much more to J and to the others with it. Autism is not a disease, and it isn't catching, although there seems to be more and more diagnosed each day. When I first started learning about autism, the numbers were about 1 in 180. Now, it's about 1 in 100 children diagnosed on some part of the spectrum. More boys than girls are affected. 
  What can you do? Learn more about autism. Ask questions, I do not mind in the least. It's staring and disdain and fear that upset me. J is a human being, not a monster. Talk to J when you encounter him. Ask him how he's doing. Sometimes he may smile. Other questions you may ask him will likely be answered by me or the Hubby. Like the rest of us, J is still learning. Give him a chance.            

Gratituesday: Dr. Andrew Wakefield, Working for Children with Autism.

Dr. Andrew Wakefield on Youtube

This man here is who I am thankful for today on Gratituesday. If you have read this blog a time or two, you know my son J is autistic. During all the time that scientists and other doctors were trying to discredit Dr. Wakefield, he continued with his assertions. Seeing this video and being reminded of things I had believed for many years gives me hope that someone actually cares and wants to do something about it. Do I believe MMR is the only cause of autism? Not at all. I think there are many causes out there. MMR is just one that at the very least helped cause my son's autism. I would give my eyeteeth to be able to have my son seen and treated by Dr. Andrew Wakefield. I highly respect his studies and work. Thank you, Dr. Wakefield for your untiring work, as well as doctors who work hard to treat autism by treating the gut and allergies. 
Join us for Gratituesday at Heavenly Homemakers!

Yummy Homemade Sloppy Joes and a Free Death By Chocolate E-Book

Photo credit: Heavenly Homemakers

 

I should be napping after the late night with a sleepless J and early morning doc appointment with same child, but I'm actually more in a writing mood than sleeping. That's a good thing, because that muse has been scarce lately!

  Anyway, we were trying to decide what to have for lunch today, and was going through my list of  what we had. I knew we had hamburger meat already cooked and frozen so I thought I'd try Sloppy Joes. The sauce that you get in a can is good, but it has high fructose corn syrup in it, something I am trying to avoid. My friend Laura from Heavenly Homemakers  has a recipe that she actually posted to her website in 2009. It's quick, simple, and delicious! I don't have a camera at the moment so I borrowed her picture above. Click on the link above and it will take you straight to the recipe. She says her sloppy joes work well as a freezer meal too, but we don't have enough left over to freeze this time. 

   Valentine's Day is coming up rather quickly, and if you're looking for a chocolate treat to make, I found a free e-book that should give you a few ideas. The Frugal Girls  had it listed on their email post, and it's from Mr. Food.  They ask you to subscribe to the Mr. Food email when you click on the link on that page and you get the e book automatically. Just thought I'd pass that along. The Frugal Girls have some great stuff that they post, from free e books to great deals on popular magazines to coupons. Check them out!

  Thought I'd pop in and share those things with you today. Enjoy! 

On Freezer Cooking, the 30 day Challenge, and Tooth Pain

 Freezer cooking, the wholesome speech challenge, and tooth pain. Of the three, guess which one I'm not so thankful for today. If you said tooth pain, you'd be right. But I'm learning to be thankful even for it. It's slowed me down some, sure, and that can be frustrating. But I'm seeing this as a valuable learning experience as well. When my mouth is screaming in pain I tend to be very cranky, yet at the same time I'm figuring out that the more I speak the worse it's going to hurt. So I have to think about what I'm going to say. Do I always make the right choice in what to say? I wish I could say yes, but I still mess up now and then. It's getting better though.
  This 30 day wholesome speech challenge is about a week in, and it's still a challenge to me. I'm thankful for the chance to participate though, because it's showing me (big time!) where I need to grow. This evening I may have hit a turning point. While making breakfast burritos, I set a bowl of egg mixture on my sink-and it promptly tipped over, Bye bye, eggs. Before, I might have said a word I shouldn't, or growled and fussed. This time I didn't. I held my temper. Major victory.
  As for the freezer cooking, I'm loving it. I wish I had a camera because the last few days, when I have a reprieve from pain, I have been preparing food. I can only do a little at a time before i end up taking a nap or sitting somewhere with an ice pack, waiting for meds to kick in, but I'm thankful for the chance to get some of this done. I think I over planned the food because I'm still trying to figure out how all of it is going to fit in that over the fridge freezer. I know some seasoned freezer cookers can get close to 30 meals packed in that space, but I'm still feeling my way on this. 
  It's been a pretty good week, I think, even counting the pain (tired of hearing about my tooth yet? I know I am!). I'll get it taken care of as soon as possible, though. I'm thankful also that I feel up to writing and joining Heavenly Homemakers for Gratituesday. What about you? What are you thankful for today?