Delaina

My daughter, Lindsey, worked in a residential home for people with developmental disabilities for a number of years. When Jonathon and I were in town we would stop by the home to see Lindsey and visit with the clients. That's when Jonathon acquired his admirer.

Delaina had beautiful dark brown shoulder length hair and dark eyes to match. When she was happy her face lit up and when she was sad her lip would hang pretty low. Communication was limited to squeals of delight or loud vocalizations to express her displeasure.

The first time Delaina saw Jonathon those brown eyes lit up and she started squealing! Her hands were outstretched and she wanted to get ahold of him! Jonathon on the other hand was not impressed! He has very sensitive ears so her communication style was an instant turn off.

After we had been there for awhile with Delaina fawning over Jonathon, and him covering his ears he'd had enough! He said "Delaina! KNOCK IT OFF!" To which Delaina's lips drooped and she sat quietly... for a few minutes.

Everytime Jonathon and I would stop in, Delaina had the same reaction to Jonathon and he to her! I thought Delaina was a nice young lady...  imagine my surprise when it turned out that Delaina was a cougar! She was in her forties while Jonathon was just 19! LOL!

Unfortunately Delaina's admiration was never returned by Jonathon. Sadly Delaina became ill and passed away recently. My heart is sad for her staff that cared for her when her family was no longer able to and I'm sad for her family, but my heart is happy for Delaina. I do believe in a higher power and I do believe that Delaina finally has her voice.

Rest in peace Delaina, rest in peace.

Dragon's butt

I'm in the process of cleaning out 26 years worth of junk in the hopes to ease the load with the impending move. Funny how I've found things that, at some point, I thought we couldn't live without and now it just looks like junk!
I found the body to Jonathon's Chinese Dragon that I'd made him a few years back for Halloween. He keeps the paper mache head of the dragon in his bedroom, but the body had disappeared.
Jonathon ALWAYS insists on driving to South Dakota to dress up and scare the Grandparents for Halloween. On our way up to SD that year we decided to stop in Gillette to scare Jonathon's cousins.
We got out of the car and I tried to convince Jonathon that I should be the head of the dragon since it was our debut as a dragon. He insisted that he was the head and I was the butt, so I was the butt.
We went into the house and the head of the dragon just kind of stood there and roared. I thought it would be entertaining to dance around, make noise, shake the dragon tail, twirling it all around shaking the bells... basically being a big goofball. Imagine my surprise when I emerge from the dragon's rear to see a man, I didn't know, standing in my brother's living room! Yeah... that was embarrassing!
Today looking at the dragon's body I asked Jonathon if he wanted to be the dragon this year and I could be the head this time and he could be the butt. Yeah, even he knows a demotion when he sees it!   

YOU IDIOT!

Some months ago we were in South Dakota visiting Jonathon's grandparents. I don't remember what exactly happened but I had said something to Jonathon and then my Mom started talking to him. Right in the middle of her sentence he says "YOU IDIOT!!" I spun around and scolded him for calling his Grama an idiot. He looked at me with his medium mad face and responded "NOT GRAMA FERRIS IS THE IDIOT VICKIE! YOU ARE !"

Here we are months later and he still feels the need to clarify that he was not calling his Grama Ferris an idiot but me. Out of the blue he'll say "Grama Ferris isn't the idiot Vickie. You are." 

Okay Jonathon... I've got it! LOL!

Grama Myrtle

My Grama Myrtle has been on my mind a lot lately so I decided it must be a sign to write about her. Myrtle was my neighbor lady the entire time I was growing up. In fact, I was born on her birthday. She was 63 years old when I was born. Our age difference never mattered in our relationship. We talked about anything and everything. She was a person in my life who made me feel like I was nothing less than wonderful. Every child needs a Myrtle in their life. Toward the end of her life I actually prayed for her passing. She could no longer care for herself and I only had selfish reasons for wanting her to stay. I often wondered what life lesson I was supposed to learn from Myrtle. Looking back there were many, but the lesson with the biggest impact came after her death.
After Myrtle passed away I wanted Jonathon to be a part of the experience of Myrtle's death since we have such a large family and experiencing death escapes no one, disabled or not.
I didn't take him to the funeral with me because I knew I needed that time to deal with my grief, so I arranged for a family friend to bring Jonathon to the cemetery. We waited until everyone had left. I took Jonathon up to the grave site where two attendants were getting ready to lower Myrtle's casket. Jonathon walked up to the grave site, looked into the freshly dug ground and echoed "I don't know if they dug it right, but they've certainly dug it deep!" I'm sure Myrtle was chuckling right along with me and the grave workers at that line from a Winnie The Pooh movie.
We were standing at the casket saying our last goodbyes, when Jonathon bent down and out of the glistening January snow pretended to gently pick something up. He walked toward me, holding his softly cupped hands out before him. I remember the sound of the crisp snow crunching under his small feet as he held out his hands to me and said, "do I have a pretty flower?" I responded "yes, it's a beautiful flower." He then turned away from me, walked over, and gently laid his imaginary bloom on top of Myrtle's casket. I was overcome with emotion.
Jonathon turned to me and said "Is that Myrtle going back to the dirt?" I was speechless. Looking back I guess it made sense to him that Myrtle was going into the ground, but he used the word "back," as in we originally came from the dirt. That incident made me realize there is greater understanding in that mind of his than we will ever truly know!

Understanding

When you have a child with autism the word understanding takes on such a different meaning. As parent's we want understanding from others regarding our children and their actions. If we don't get it, we deal with it. Maybe not in the most effective way... I'll admit to flipping the bird on occasion. I'm not proud of it and feel horrible afterwards but it's so frustrating to be out in public, trying to deal with your child and then have some insensitive person make a nasty comment.
An incident that comes to mind happened in the movie theater a few years ago. Jonathon talks during the movies. I know it can be irritating but we were watching a children's movie and he was no louder than a child would be. Plus, my theory is we have a right to go out as a family and anyone around us who is irritated has a right to move! This man, sitting two rows in front of us, turns around and yells "shut up!" In my defense it had been a really bad week. This was the third time someone had commented to or about Jonathon and I'd had enough! I leaned forward between the two teenage girls sitting in front of us and said "you need to mind your own business!" Even in the dark, I could sense the girls uneasiness. I think they were afraid of being caught in the middle of a Mom smack down! So, to calm their fears, I leaned forward and loudly said "don't worry girls, I won't come between you two to KICK HIS ASS!" They got quite a chuckle and he didn't so much as even glance back through the rest of the movie!

Doing Good!

Spring is typically a rough time for Jonathon, as is the Fall. His behaviors have always increased in those two seasons. We have had a good couple of weeks without any blow ups! It’s so nice to enjoy being with him and to not have to be on constant alert that something or someone will set him off. We raked part of the yard today and brought in firewood. He’s doing AWESOME and I am thankful!

Mother's Day

Saturday I was having a discussion with Jonathon about Mother's Day. He said he would tell Grama DeVries, Grama Ferris and Grama Renner happy Mother's Day. We talked about how they were all mother's and that I was his mother. So, to make sure he understood (okay, I got a little carried away) I exaggerated that it was "MY DAY!!" LOL! I told him Mother's Day was the day to do something VERY NICE for his mom, a.k.a. ME! We discussed chores he could do and I emphasized that a foot rub or a back rub would be wonderful! He protested the foot rub, since feet are disgusting and all. I convinced him that a foot rub with gloves would be nice, but I wasn't holding my breath on getting that gift.
All day Sunday anything I asked him to do he was up and had it done in no time. Come evening I said "hey Jonathon am I going to get a foot rub?" He responded "with the gloves for the foot rub," so I got him gloves and he did it! It wasn't a lengthy session and he was only going to rub one foot, so I reminded him I did have two feet! It was over in no time, but the true gift came at the end. I genuinely thanked him for his gift and that it felt so good. Jonathon is not a person who smiles. His affect (facial expressions) are generally flat, which is common in people who have autism. After I thanked him, his face lit up and he got a sheepish grin! I could tell he was so pleased with himself that he gave me a gift that was all his own. It wasn't someone else buying something for him to just hand me, but it was an act that he did independently. My heart is so happy for him! I love knowing that he has felt accomplished! I am a very blessed Mom!

Helping

This morning we're headed to the garage to clean. I knew Jonathon would balk at my weekend project and sure enough he did. When I told him we needed to get the garage cleaned out his response was "why in the heck should I help you?!" He caught me off guard since it wasn't his usual protest of "I can't clean! You can do it!," I spun around and said "WHAT did you say?" to which he repeated "why in the heck should I help you?" It sounded very scripted so I asked where he had heard it from and he did name the movie he was copying. As his mother it was my job to inform him why he needed to help... because you live here!
I'll let you know how the clean up goes!

Maggot

Yesterday Jonathon was a trooper at helping around the house. There was no complaining, he did everything I requested of him. He split and hauled firewood, he gathered up the laundry and threw it down the stairs to be washed, he vacuumed, he shredded papers, he fixed his own lunch, he even willingly sat down and worked on learning money with me. He did an awesome job all day long, so at the end of the day I went into the computer room to thank him.
I told him what a hard worker he had been and I was so proud of him. I said "I'm so proud of you I could just kiss you!" His response was, of course, "with the noses." He doesn't kiss with the lips because, duh, they have germs! He only gives Eskimo kisses. I asked if I could give him a lip kiss on his shoulder, on his shirt... "NO!" I resorted to "please, please, please, just one lip kiss?" He obviously interpreted my actions as being completely out of control because he replied "GET A HOLD OF YOURSELF YOU MAGGOT!"
So, no lip kiss for me, but I did get a good laugh and an Eskimo kiss. And again... he makes me smile.

Manipulation

Can kids/people with autism manipulate? Most definitely they can and do! Jonathon blatently demonstrated his manipulation on our way home from Kentucky.
We had gone to the horse races on Saturday and Jonathon had a blow up. Come Sunday Jonathon commented that he could go back to the races and "be patient and kind." In the past, we have taken him back to places where he thought he messed things up behavior wise and let him "fix" them, but this time there was no time to "fix" it. We thought letting him go back and "fix" situations brought him closure, which it did, but the piece we left out was that in some situations you can't go back and fix them. Note to other parents: Think about what you do today and how it will come back to bite you in the ass in the future!
I figured we were headed for a blow up and sure enough no matter how many times I told him the races were over and it was ok he was beyond comprehension.
When you're in the middle of combat it's hard to remember what you're supposed to do. Try as I might to recall the email from the autism specialist my own thoughts of you little shit! Knock it off! intermingled with "empathize, remind him of where we are now, redirect"...... aaahhhhhh what else did she say to do! He was having nothing to do with it, so I told Tim (loud enough for Jonathon to hear) "Jonathon is probably hungry so once he's patient and kind and ready we can go ahead and stop to get him something to eat." It wasn't ten minutes later when out of the backseat I hear "Jonathon's being patient and kind and you should get him to his restaurant." My gut told me to hold out for a bit. To stretch out the newly "patient and kind" Jonathon. To give him time to soak in the new found good mood, but we needed fuel and there was a McDonalds right there so we stopped and we fed him and by doing so we fed the beast within!
He gobbled down his Mickey D's in about five minutes. He seemed to be settled down. We had all of 20 minutes of a fairly uneventful ride until he remembered oh that's right I'm ticked because you won't take me back to the race track to fix my bad day!
He pulled it together long enough to ensure his McDonalds and then started in again! I knew it! I knew we should've fueled the truck and told him we would get him his food at the next stop. Why does hindsight always involve me kicking myself?
So, what happened? After trying to deal (as I type that... deal... it makes me question... do we try to "deal" with him during his poopy behavior times?? Not deal, as in get through the episode, but deal, as in "Let's make a deal." Something to think about definitely!) with his unsafe behaviors of not staying in his seat belt, kicking, hitting, screaming, blah, blah, blah, same crap different day, I told Tim to pull the truck over. I told Jonathon we would not be going any further until he was ready to be safe. Pulling over on interstate was a bit of a gamble as well since I knew he was likely to get out of the truck. I was pretty proud of myself thinking I'd done one thing right... his shoes were muddy from the derby the day before so I had thrown them in the back of the truck. He's a huge germ-a-phobe so I knew he wasn't likely to get out of the truck without shoes... should've confiscated his socks as well!! He got out of the truck, in the pouring rain and grabbed his shoes! UGH! I convinced him to get back in the truck and take off the socks and shoes, which he did. I told him that when he was ready to go to let us know and we would be on our way back to Glenrock, which for once he actually wanted to be in Glenrock! Within ten minutes we were back on the road looking like drowned rats but at least there were safer behaviors in the vehicle. 
End note to other parents - I don't want to mislead ANY parent into thinking we only use redirection, behavior modification, etc... when dealing with Jonathon's behavior. We do use a PRN medication when Jonathon is escalating. A PRN medication is a medication that is given only when it is needed. We give it to him when we are seeing increased anxiety/agitation or when he is no longer able to control himself. I still question when we should administer the PRN. I want to give him the chance to work through his emotional disregulation. I don't want to be cramming medications down his throat anytime he experiences a little bit of anxiety. On the other hand if we administered it sooner would we avoid the huge blowups? It's such a hard call. Sometimes he can work through it and other times, even with an early dose of the PRN, we still end up in a behavioral nightmare. And now, again, as I'm typing this another thought has popped into my head... by waiting to administer the PRN, is that like waiting to see if a diabetic really needs their insulin????
The only advice I can pass on and know it is 100% true and accurate... THERE ARE NO EASY ANSWERS WHEN DEALING WITH AUTISM!!!

   

Lunatic!

Jonathon came in the kitchen last night and stated "my father's a lunatic!" I responded with a supportive, very aware "I know he is," to which Jonathon added "my mother's a lunatic too!" He makes me smile!