Construction Ahead!

As we get ready to go see the autism specialists out of Denver I am realizing just how much work we have ahead of us. It's not going to be easy but, I do think it is necessary. We owe this chance to Jonathon in order to give him the best chance at a fullfilling life.

One of the overall goals we have, as a family, for Jonathon is for him to increase his independence. We are not a household that is strictly structured. We do our activities of daily living everyday, but we do not have them written down to occur at a specific time. Which I don't want to be so locked into a schedule that we can't make changes without a melt down. I think there is a balance to be found there.

As we've been preparing for our visit to the specialists I've asked myself "do we need a tighter structured day?" My answer is... "Yes." My response to that is "God please help me to take it one step at a time and not feel overwhelmed by the tasks ahead!" Why do I think we need more structure? Because currently Jonathon is not able to move through his day without constant requests and reminders about what he should be doing and when. It is US moving him through his day. I don't want to have to keep doing that. I want him to take on some of the responsibility for his daily life activities. Not only to ease the load on me but to give him self confidence and independence. Plus, he gets very tired of hearing me or Tim say "Jonathon, come here. Do this, do that." Who can blame him! I'd get sick of hearing someone constantly saying "come here, come here, come here!" His response of, "Oh, all right Vickie. What do you want now?!" attitude says it all!

I really do want us to be successful in this venture, so instead of looking at the entire job ahead, I'm going to take it a bit at a time. I'd rather move slowly and be successful than move too fast and fail.

I'm sure you will hear about our progress as we go!! Wish us luck!

Balance

Wow! I didn't realize it's been so long since I posted! Ooops! Just been busy with the holidays.

Last night Jonathon was getting ready for his bath when he made a request. I don't remember his exact wording, but his request was something like,  I like that t.v and vcr in my bedroom. I responded "you want a t.v. and vcr in your bedroom?" "Yep." "Why?" "Because I like that t.v, vcr. You and Daddy Tim have a t.v., vcr in your bedroom." "Yes, we do. You think you need one in yours?" "Yep."

Here's the dilemma... he is 21 years old now, so as an adult he has a right to make that request. My concern is developmentally he is around five years old and I'm afraid he would be up in the middle of the night watching movies. He already has sleeping difficulties. I am leaning toward letting him have it because he is an adult, and the autism has taken away his ability to make so many other decisions regarding his life. Plus, for him to realize he has a "want" and to voice that desire to me is HUGE PROGRESS! Out of the blue he made this request and I don't think it's an unreasonable request. By letting him have it, it will put more on Tim and I. We will have to monitor his use, both in the day and the night. During the day, I could see him camping out in his room never to be seen and, at night when he's restless, I could see him staying up all night watching t.v. instead of getting back to sleep.  I guess it all boils down to structuring the use of the equipment, setting expectations up front and enforcing them. His birthday is in March so maybe that's what we will get him for his b-day gift. That gives me a couple months to think about how to structure this so he can have what he wants and be successful in using it.

Larry

Jonathon has been asking to go see the movie 'Tower Heist' for quite some time now. I've avoided it because of why he wants to see it. He likes Ben Stiller, who played "Larry" in 'A Night At The Museum.' Jonathon thinks "Larry" will be in the movie 'Tower Heist!' I've tried to explain that his name is really Ben Stiller and he is playing a different character, but it just hasn't connected with Jonathon.

Last night we decided to take him to see 'Tower Heist.' I was a little worried that he would not sit still and be quiet once he found out it was not "Larry." He did surprisingly well! The first part of the movie when they are setting the plot gave him a bit of trouble and he talked but not too bad. Throughout the movie when anyone called Ben Stiller "Josh" (his name in this movie) Jonathon would quietly say "Larry." LOL!!

I'm proud of Jonathon for sitting and watching a grown up movie even when it was different than what he was expecting. Once the real action started in the movie Jonathon really got into it! He was cheering the characters on, throwing punches when they fought, and laughed (a forced laugh - which is typical for him. He doesn't understand humor so he goes off what others are doing.) when the rest of the movie goers laughed. I see this experience as progress! I don't know that he realizes Ben Stiller plays different characters, but that's ok. It may come with time.

Alive!

I was in Jonathon's bedroom this morning putting clothes away when he sat up in bed and exclaimed "HEY! I'M ALIVE! And so are you Vickie!" He sounded a little surprised as well as elated!

Ever since the dentist put him to sleep to do some dental work a couple years ago Jonathon thinks the dentist killed him. I'm not sure how he thinks if he was dead that he could come back. That's still a mystery. The dental event plus the deaths in our family have him very aware/afraid of death, but obviously we're still a bit confused! Such a hard concept to teach and to understand!

Christmas Spirit

It may be safest for me to stay out of the stores with Jonathon until after the holidays. Some people irritate the living daylights out of me!

One of the most beautiful things about Jonathon is his innocence. He doesn't see people as poor or rich, dirty or clean, Christian or Muslim... he sees a person, who no matter what, he wants to have an interaction with. Last year Jonathon greeted everyone with "HAPPY CHRISTMAS!" This year he has been greeting everyone with "HAPPY HOLIDAYS!" These greetings have been his choosing. I am not going to tell him not to greet people with something as innocent as a holiday greeting because they think he's weird or some people (Christians) don't want to hear "Happy Holidays." His greeting has nothing to do with a person's beliefs. 

I might be more understanding of people (since autism is considered an invisible disability) EXCEPT he wears a badge that says "PLEASE BE PATIENT I HAVE AUTISM!"

Maybe we just keep running into illiterate people? Or maybe people could learn a huge lesson from him in acceptance and kindness. I know there are people, who he has greeted, who walk away from him and he has touched their lives, and all it took was a holiday greeting.

Cycles

Jonathon has been a cycler for as long as I can remember. We see an increase in aggression in the Fall and the Spring. What I have just become aware of, or been able to see the pattern of, is when Jonathon is not in the cycle of increased aggression we have an increase in obsessive behaviors. His verbal stimming/echolalia (obsessively repeating parts of movie phrases) increases significantly.

I know he's trying to regulate himself but why the cycling? It's either on the edge of blowing to full blow ups or the verbal stimming, which can lead to safety concerns. He gets into such a "zone" when he's verbally stimming that I've had to run and grab him before he was hit by a car in a parking lot. He completely blocks out the world while stimming. He will plug his ears so he can't hear anything else around him.

I'm hoping that once we start working with the autism specialists out of Denver they will be able to help pinpoint more of the "why" of his cycling. We've been able to identify his cycles, but now we want to know how to help him regulate himself in a more consistent manner.

The verbal stimming is obviously the better option compared to the physical aggression. I just worry about his safety while he is blocking out the world in order to cope.

It can be very puzzling trying to figure out the "whys" of autism!

 

Affection

The other day Jonathon and I stopped by my brother's house to see how he was doing since he had to work on Thanksgiving and didn't come home to our parent's house the day after. This would be my brother Richard whose daughter, Kimberley died this summer.

As Richard, Alison (Kimberley's sister) and I were visiting, Jonathon came up to his Uncle Richard and started rubbing/scratching his back. I was quite surprised as Jonathon doesn't just touch people. In fact, if people touch him he's worried that they have contaminated him with their germs!

Jonathon doesn't have the verbal skills to say "I'm sorry for the pain you have in your heart" but somehow he fought through his autism that day to reach out to my brother. It was one of those moments when I realized that somewhere in that beautiful autistic mind he can have more understanding than what is apparent.

I love those moments... when he reaches out from his autism and touches our lives with such great impact.

Sharing

I have met many parents over the years who refuse to talk to others about their lives with their children who have autism. I know there are people who think I share too much regarding the life we have with Jonathon. The reason I do share our lives is for Jonathon. I don't think remaining silent, hiding the truths of living in our world do Jonathon any good.
It is my responsibility to educate the people in Jonathon's world about autism, his struggles, his achievements, his life. By not sharing him with others, I feel, it implies shame, embarrassment, that we are not accepting of our lives with him and who he is as a person. There is nothing to be ashamed of for who he is, which is my son who happens to have autism. We have definitely had embarrassing moments, but who doesn't have embarrassing moments with any child, whether they have autism or not. I consider myself very blessed to be Jonathon's Mom.  
Jonathon doesn't understand this world, but he has to live in this world. If, by speaking up and sharing the events that occur in our lives with him, I can make the world a more accepting place for him to live in then I am going to do it. My intentions are never to take away his dignity, but to educate others.  

Daddy Tim

Today is Daddy Tim's birthday so in honor of him my post is about him.

Early in our relationship I knew Tim wanted to be a Dad more than anything. The births of our children Lindsey and Jonathon were definite highlights in his life.

He was so proud of Lindsey and like many new Dads wanted to show her off to his Navy buddies. The problem was the hospital would only allow family in to see the baby. So what does Tim do when he brought two of his buddies to the hospital to show off his little girl... he told the nursing staff "we're not sure who the Dad is so we're all here to take a look!" OMG! Could've killed him! LOL! Obviously the hospital thought he was pretty funny too since they let them all in... or they thought I was a tramp! At her birth and for weeks after, Tim would look at me with tearful eyes and tell me "Thank you. Thank you so much."

When Jonathon was born he was a BIG baby... Jonathon, not Tim... well Tim was pretty tearful! The hospital asked if an intern doc could be in the room while I delivered... when a woman is about to give birth she really doesn't care if a marching band comes through, so I said "sure." The minute Jonathon came into the world Tim cried... a lot! So much so that the intern asked me if Tim was ok! I said "yes, he did this at our daughter's birth as well. He's fine!" Tim was so excited to see how much Jonathon would weigh. He couldn't wait for the hospital to weigh him. In fact, he followed them up to the room where they weighed the babies. You'd have thought Tim had just caught the biggest fish of his life! He was so thrilled. Jonathon weighed in at 9lbs. 6oz. and was 23 inches long!

The other day I was commenting to Tim that I wished we'd have had more kids. Tim's response was... "I'm happy with the two we've got and I'm so proud of them."

Happy birthday Tim and thank you for being a Dad who has great love and joy for our kids!

InFEARiate

The meaning of the word infuriate has taken on an entirely new meaning to me then what it used to. "Used to" meaning before Jonathon. Coming off six days of blow ups my inFEARiation is still fresh on my mind.

When Jonathon struggles, behaviorally, I try to maintain myself as his caregiver. Years ago, I learned to take myself out of the role as his Mom and step into the role of caregiver when he is having a melt down. Why? What's the difference in being a caregiver and a Mom? A caregiver is performing a job. The job is too get through the crisis while maintaining oneself. If I were to remain in the role of being Jonathon's Mom during a blow up... as his Mom... I wouldn't survive. It's too heartbreaking to think that the child I gave birth to, held, rocked... loved... would cause me harm.

I've noticed that in recent times I've found myself not maintaining my caregiver role as well as I used to. The difference being, that as Jonathon has aged, fear has set in. Fear that could give way to reality. Mentally he is a child; physically he is an adult. The world is going to see him as an adult before they see him as a child in an adult body. When he melts down and the aggression controls him, fear can sometimes control my actions. My reactions aren't out of anger, but out of fear. The fear that the authorities will become involved. The fear that he will be removed from our home, which would lead to my ultimate fear... institutionalization.  During his meltdowns I just want him to understand the possible implications of his actions. I want to scream "DON'T YOU GET IT?! YOU COULD END UP IN AN INSTITUTION!" The thing is... he doesn't get it. Does that mean he will never understand the impact his actions have on his life? I hope not. I won't give up trying to help him... guide him to a place of understanding. My fear for his future is my greatest burden, but my hope for him is greater.

Project Lifesaver

Sometimes it is necessary to lie in order to protect someone. After six days of continual blow ups and Jonathon leaving the house without us we decided we needed to contact our local Sheriff's office for a tracking bracelet for Jonathon. It is a white watch looking device that has a GPS inside. If Jonathon takes off and we can't find him we call the Sheriff's office, tell them we need them to activate the bracelet because he is gone and they will track him down. It is basically the same type of device used to track animals in the wild.

We weren't sure how we would be able to get him to keep the bracelet on especially if he knew it was a way for the authorities to find him when he's upset and has taken off. Visiting with the Sheriff's Deputy, she mentioned an elderly man who wouldn't keep his bracelet on so they told him it was to monitor his heart. PERFECT since Jonathon has been obsessing about all of our hearts due to the recent deaths in our family. Jonathon is now sporting a tracking (heart) bracelet from Project Lifesaver.

If anyone has a family member who is prone to "exploring" when they shouldn't... people with Alzheimer's, Autism, Down Syndrome, etc... contact your local Sheriff's office and ask them if they have Project Lifesaver. There is a nominal monthly fee (ours is $10 a month, but it can differ). I know in places that are more populated there may be higher fees, but ask if there are any kind of scholarships/funding available to cover the cost.

It is definitely worth looking into if you have a family member who's safety is a concern!  

SNAPPED

Jonathon woke up in another mood today. I always know it's going to be a challenging day when he dresses before coming upstairs. He didn't disappoint! I headed off the "mood" with his "as needed medication" - it's only used when his anxiety and agitation are escalating or escalated. The meds helped him pull it together, so I decided I would take him to the grocery store to get his favorite lunch, chicken strips.

The grocery store only makes certain food items on certain days. Wednesday is chicken strip day. We have had melt downs over going to the store on different days of the week and it not being "chicken strip day." The poor women at the deli have been chewed out by Jonathon over the lack of chicken strips, so our relationship with the deli ladies is a bit strained.

We walked up to the deli counter... I looked in... and... NO CHICKEN STRIPS!

The melt down that followed... mine... not Jonathon's, can only be understood by a mother of a child with autism. I felt the blood drain from my face and my eyes pop out of my head as I snapped... "Isn't today Wednesday? Where are the chicken strips?!" 

I could tell she was a little taken aback with my tone. In that moment what she saw was a woman who  seemed like a rude, almost crazed person. What she didn't see is what brought me to that moment. Five days of blow ups. She didn't witness the melt downs, the physical assaults to his Dad and me, the damage he's done to our property, us chasing him down to keep him from damaging other's property, or us tracking him down in the middle of the night. It wasn't about the chicken strips... it was knowing that no chicken strips meant I would have yet another fire I'd have to put out with him... and at this point... I'm worn down... I'm tired.

Any other day I could have handled it, but today I just needed those stupid chicken strips to be in that deli case. Thankfully she assured me that today was, indeed, Wednesday and that they had run out and were cooking more.

THANK YOU GOD! It was practically a Christmas miracle! :)     

Desperate Measures

The other day Jonathon woke up on the wrong side of the bed. I'm not sure what caused his mood. Usually he's easy going when he wakes up. As the day went on his agitation increased so my sister in law, niece, nephew and I decided to take him to the town park to throw rocks in the water... one of his favorite activities.

It was a cold day, a mere 14 degrees outside. Plus, the wind was blowing a bit so it was probably even colder with the wind chill. My sister in law and I sat in the vehicle while the kids went down to the water. After awhile my niece came to the vehicle and said Jonathon wanted us to come to the water, so we headed to the creek.

Jonathon rarely goes in the water so I was surprised to see his shoes and about 6" of his pant legs wet. When questioned about how he got wet he said he'd slipped on the mud and slid into the water. With it being so cold out I told him we needed to leave and go home so he could get out of his wet shoes and clothes. He was NOT happy with me. He wanted to stay and throw rocks and sticks in the water. After a few minutes of trying to convince him by telling him he could get frost bite, his feet could get sick, and him not cooperating... I got a little desperate... okay, I got a lot desperate! He wouldn't listen to reason as he was still in a bad mood, so I told him he had to get in the car or his feet would get sick and he'd end up a peg leg! I know... it's horrible! But I can't exactly pick up a 225 pound 6'2" man and put him in the car! It did work. He got in the car, we got home and he got out of his wet clothes. It isn't like I lied... I just gave the most extreme consequence.

Gone

Last night I took Jonathon down to his bedroom to show him the memory boxes I had put together for him to go to when he wants to "spend time" remembering his Grampa DeVries, Grama Renner and cousin, Kimberley, all of whom have passed away within a year and a half.

We looked at the pictures and talked about how he could put things in the boxes if he wanted to. He wanted reassurance that our hearts were alive and that we weren't dead. We came back upstairs, he sat down on the couch, turned to me and said "Grampa DeVries isn't coming back is he."

Jonathon's language is usually broken but this time he clearly stated what he knew to be true. I'm glad to see he is gaining understanding of death and yet my heart breaks for him. He has lost people who had great love for him... I think his statement was an acknowledgement of his loss.

I hope I can help him understand that he can carry that love with him throughout his life. He was and is very loved.

Halloween Memories

This is a true event! If you know my family... this is typical!

About nine or ten years ago, Jonathon was set on going up to South Dakota to scare all of our relatives for Halloween. He wanted to be Frankenstein.

We got him all dressed up and he scared the Grama's, the Grampa's, the aunts, uncles and cousins. On Sunday we were to head home, after stopping in Rapid City to scare one more person... my aunt Joyce. I got Jonathon dressed up in his Frankenstein outfit and we headed to Rapid City. We weren't very far down the road when my Mom called and said they were concerned, as no one had been able to get a hold of my aunt... the one we were going to scare. She was 78 years old at the time, so we were concerned.

By the time we got to Rapid City one of my uncles, a brother and the police were at my aunt's house. My aunt had passed away.

My aunt Joyce would have laughed at the scene that followed... her house was crawling with the police, family arriving, neighbors out on their lawns looking to see what was going on... and here's Jonathon... dressed as Frankenstein (with hair painted black and stiffened to create the perfect "pokey hair" - as Jonathon called it), green painted face with bolts sticking out his neck, walking around her yard making his Frankenstein noises and doing his Frankenstein walk ... and her... my aunt... dead... on the couch! I can only imagine the neighbors trying to figure out WHY Frankenstein would be walking around her yard at a time like this!

I had to giggle and think... ONLY IN THIS FAMILY!

Tallywhacker 2

What is up with this kid! He is obsessed with talking about his tallywhacker! I guess maybe I should be relieved... it could be a typical guy thing! LOL! Good Lord!

The other day his comment was "a perfectly good tallywhacker... WASTED!"

TALLYWHACKER!!!

Jonathon and I were returning home from South Dakota Sunday night. We were about an hour and a half from home when Jonathon decided..."hmmmm, that's right... I was ticked earlier so I think I will continue my rampage." When he is mad he will often bring things up that he knows are not appropriate. Sometimes he will do it to fuel his anger (it's hard to explain and I have yet to figure out why he does it, but he does) OR he will say things that he knows irritate the living daylights out of me. He decided to try to irritate me with the dreaded conversation about tallywhackers. (Yes, he knows it's really a penis, but he prefers to call it a tallywhacker... whatever... I have bigger problems to deal with than what he calls his body parts!) Soooo, for 20 minutes... TWENTY MINUTES... driving down Highway 59, I listened to "Does Vickie have a tallywhacker? Does... Vickie... have... a... tallywhacker?  Does Vickie have a TAL-LEE-WHACK-ERRRRRRR?
Did he suceed in irritating me... YES! Did I let him know he was irritating me... NO! I simply stated "when you can ask me a different question I will talk to you." Once I had a cell signal I had him call Daddy Tim so he could tell Tim how irritated he was with me. The phone call FINALLY ended the TAL-LEE-WHACK-ERRRRRRRR conversation... well that and a little bit of medication!  

Problem Solving

One of the areas I see growth in for Jonathon is the area of problem solving. He encounters what he perceives as a problem and he is coming up with his own solutions. It may not be a practical solution but at least he's actively thinking about the situation and is showing concern for others. That is HUGE for people with autism. To think outside their world and to think of what others needs might be!

For example when my father in law, Ron, died a year and a half ago Jonathon was worried about Grama DeVries being by herself so he suggested his Uncle Kim, who was separated from my sister, marry Grama DeVries! That would've been an awkward wedding! LOL! Instead "Uncle Johnny DeVries" spent a good deal of time with my mother in law after Ron passed away.

Now with Grama Renner dying Jonathon is worried that Uncle Clayton or "Uncle Clankton" as Jonathon calls him, will be all alone. My uncle lives in an adjoining apartment from my Grama Renner. In these last years of her life Clayton was her primary caretaker. Jonathon with his problem solving has decided that "Uncle Johnny DeVries will live with Uncle Clankton." I guess he figures that Uncle Johnny DeVries took care of Grama DeVries after Grampa DeVries died so he should be able to care for his Uncle Clankton too!

I love how his mind works! I don't think I'll ever totally understand it, but he is definitely unique in his thinking!

To Participate... Or Not?

My aunt has requested a period of time during my Grama Renner's funeral to be opened up for people to share their memories. I thought, okay... we have a couple of days, I can visit with Jonathon and see if he has anything he would like to say about Grama Renner.

I think we may need to visit a bit more before Wednesday since his comment so far has been, "I am sorry Grama Renner is dead."

Perhaps we'll skip participating during the open mic portion and just listen!

Gram

My Gram passed away today. She was 96 years old. I asked Jonathon what he thought of Grama Renner and he said "Grama Renner was wonderful." She thought he was pretty wonderful too.

Casper Moutain

I had a doctor's appointment today in Casper. When I told Jonathon he said "we like that Casper mountain to go up." I was surprised he mentioned Casper mountain as we don't go up there often. Since he (in his own way) asked to go and my only plans were to return home and work on the house I told him we could go up there for a walk after my appointment.

It was absolutely beautiful on the mountain. The trees are turning colors, the pine trees smelled wonderful and it was so quiet, well, as quiet as it can be with Jonathon in the woods! We walked around Beartrap Meadow and then up to the "Egypt Egyptian Pyramids" as Jonathon calls them. At first, seeing Jonathon climb the sand piles and sitting on the edge creating his avalanches, made me think of his developmental age of five. As he played on those sand piles today I saw developmental growth.

Typically he would go off and play by himself, not sharing his experience with anyone. Not that he has never wanted to, he's just not been able to, but today he talked to me about his play. What his play looked like to him. How when he rolled the clods of sand down the pile he was creating avalanches and how dynamite would make an avalanche and that it would look just like what he was creating. Of course, his explanation was in his own language and way of explaining things, but I knew what he was trying to share with me. He SHARED an experience! He wanted me to see his world through his eyes and to experience the joy he was experiencing. I can't begin to express how huge a step this is for him! HUGE! ABSOLUTELY HUGE!

I'm glad he suggested a trip up the mountain today. I think we'll have to go more often.

Tooth Fairy

This summer, my niece, Rachel was spending time with us when she lost a tooth. After we returned home from taking her back to South Dakota Jonathon found Rachel's tooth on the bathroom sink. His wheels started turning the minute he saw the tooth. He picked it up, looked at it, looked at me, and said "can I use this Rachel's tooth for money dollars?" And he took the tooth to bed with him!

Rachel... Ya snooze! Ya looze!

Rachel is 13 so pretty sure she's past the tooth fairy. If not, Rachel, hit your Tooth Fairly up for "money dollars" and I'll vouch for ya!

 

Jonathon Meet Jack

The other morning I handed Jonathon his morning meds. Needing a drink to wash the pills down with Jonathon grabbed a partial Coke sitting on the table and slammed it down. He barely had the bottle removed from his lips before he let out a huge "YUCKY" and began a desperate search for another drink to wash the first drink down.
The look on his face sent my mind back to the previous night when Tim had commented that he had two days off in a row. A rarity for Tim, so he was going to treat himself to a Jack and Coke.
HOLY CRAP! Jonathon had slammed Tim's left over Jack and Coke! On top of his morning meds!
We were getting ready for a 3 1/2 hour car ride to my brother's house... needless to say, it was a quiet ride!

Smile

I am extremely happy to be able to report that Jonathon is doing really well this Fall! As I previously posted, Fall is a difficult time for him. For years we have seen huge increases in his aggressive behavior in the Fall. He's just unsettled, not happy. Not that Jonathon EVER wants to be happy! The thought of "happy thoughts" freaks him out and he will tell you that! This Fall has been different.

He is more tolerant, more attentive. Today has been a tearful day for me. Feeling overwhelmed. I was in tears and decided to take Jonathon for a walk to get out of the house. As we're walking Jonathon asked "Vickie Honey, (his new name for me) you are crying and sad. What's wrong with you? Huh?" I told him I was sad about a lot of things right now. He responded "After you are crying and sad we are here to help you smile." And we walked on. He didn't reprimand me and tell me not to cry. He let me cry. It was okay to cry.

I have no doubt he will help me smile again.

Fall

Fall has always been a favorite time of year for me. I love the cooler weather, the beautiful fall colors, Halloween and Thanksgiving. Thinking about it, it's a bit odd that Fall is one of my favorite times of year. Historically Jonathon struggles with his behavior more in the Fall. We have had some pretty horrendous blow ups in the Fall. Yet, for me, it's my favorite season. I think it's a testament to the human spirit. That our souls are capable of overcoming extremely difficult times to find joy in our everyday lives.

I am pleased to say this Fall Jonathon's overall level of anxiety has decreased.
We have had some bumps, but nothing like in the past. The reason for the decrease in anxiety, I believe, is he is "done with school forever" as he says.

Sturgis

In August, Jonathon and I survived nine days as vendors for the Sturgis Motorcycle Rally. Jeff Nicklus, from Desperado Motorcycles, generously donated Jonathon's vendor space so he could sell his Kurmudgeon Kards and T-shirts in Lead at the Desperado Junction. I went into the week with a some trepidation, but it was good.

Jonathon greeted every person who came past his booth with a "HELLO THERE. HAVE YOU BEEN TO DISNEYLAND?!" The one interaction that had Tim and I holding our breathe was when three Sons of Silence bikers came by the booth. Here are these three burly guys, wearing their jackets with SONS OF SILENCE across the back and what does Jonathon say "HEY MISTERS..." they all three turned and looked like they could poosibly rip our heads off... Jonathon continues "HAVE YOU BEEN TO DISNEYLAND?!" They mumbled "no" and kept walking... Tim and I suspect they have been to Disneyland, they just didn't want to admit it in front of their buddies!

An example of how simple Jonathon sees and lives his life. He doesn't see all the crap that we typical people see. He sees a person... regardless.

He has an amazing soul.

 

Sorry!

Sorry everyone! I just haven't felt like writing lately. Life's been hard since my niece's death, but we are moving forward, carrying her memory with us.

A few weeks ago Jonathon and I were dancing around the living room being silly. I thought how my niece would laugh at me if she could see us. Just as Jonathon and I stopped  dancing the song 'If I Die Young,' which was played at her funeral came on the radio. I started crying. Jonathon had his back to me, but turned and said "What?" I hugged him and he said (in a rather irritated voice) "you are crying and hugging me for lots of times Vickie!"
What progress he has made! For him to notice that I'm sad and to be able to verbalize that he's over my emotional state... that's PROGRESS!! There were many times when he had no idea why I would be sad or tearful. Progress can come for our kids. It just may take a bit longer.

Then What?

School has started in our area and now I am trying to find activities to fill Jonathon's day since he's no longer in the school system. HOORAY!  He wants to know everyday what he is going to be doing. I think he has a right to know what his day will look like. The problem is he wants to know "where are you going to take me to do something I want to do today?"
There are days when I need to stay home and get stuff done around the house and he does not want to hear "we're staying home." I think my goal will be to make a point of taking him out each day. Even if our outing is just to the post office, grocery store, or library.
Which speaking of... I told him we would go for a walk today... it's now 9:00p.m. and he is insisting on going for a walk and has even found a lantern to address the problem of it being dark outside... gotta go!

Help

Does anyone out there in blogland have any ideas on how to help me help Jonathon gain a better understanding of death?

We have shown him and involved him in the death of animals and extended family for years, so he has seen what death looks like. My struggle is he thinks we leave dead people at the cemetary and that's where they live. I need a way to help him understand our belief that we have a spirit and that when we die our spirit will go to heaven.

A minister used a tent as an analogy... yeah, even I didn't get that! He was saying that our bodies are our tents and that some tents are fragile and collapse or die (???). Uhmmmm, I guess... but where does our spirit leaving the body come into play? Because what's inside my tent is my sleeping bag and pillow! LOL!

I'm thinking of taking a balloon filled with helium and putting it in a box. I will tell Jonathon that we are pretending (for the most part he gets pretending) that our bodies are the box and inside is our spirit and then open the box and he can visually see the balloon rise and go out of sight. Then do I bury the box??? Can anyone suggest a better "container" to depict the body?

What do you all think or do you have any other suggestions?

THANK YOU!!!
Mom-Vickie

Family Death

I haven't written in forever it seems. A little over a week ago my extended families lives were turned upside down when my 15 year old niece, Kimberley, died unexpectedly from a fall. As usual Jonathon just being Jonathon helped us through in a time of complete sadness.

Jonathon has so many aunts, uncles and cousins he has a hard time remembering everyone's names. When we heard about Kimberley I asked Jonathon if he knew who uncle Richard was and he responded "yes." I asked if he knew who Kimberley was. The tone of his response "I know her" told me he knew the seriousness of what I was about to tell him. I explained that she was hurt very badly and was going to die.

We had been out camping and had a good 6 hour drive ahead of us to get home to our family. Jonathon who is usually extremely talkative sat quietly while my sister and I made phone calls.

On the drive home my sister and I were in tears off and on. At one point Jonathon said "Mom-Vickie and Aunt Mary are crying and sad. I can help you smile." I looked in my rear view mirror and saw him with the most genuine smile he could muster. We're lucky to see a bit of a sheepish grin on his face once in awhile, so his attempt at a smile to cheer us up was much appreciated.


 

First meeting

Today is Jonathon's "brother-friend's" birthday. The "brother-friend" being Lindsey's boyfriend, David, so in honor of his birthday a little story about the first time David met Jonathon.

Lindsey and David had come over to the house to have dinner and for David to meet Jonathon. David had no idea the things that can come out of Jonathon's mouth and that most of the time what Jonathon says is echolalia. We were sitting at the dinner table when Jonathon looks at David and says "David hit me in the face!" The expression on David's face was priceless as he exclaimed "I didn't hit you in the face!"

The rest of us got a chuckle out of it because we knew it was movie talk, but David had no idea! What an introduction to the family! Even that incident 5 1/2 years ago didn't scare David off, but David does recall that evening frequently!

Happy Birthday David and thank you for being such a good "brother-friend" to Jonathon!
 

Mentally Challenged

Jonathon, being frustrated with my continual request of "come here please" and me giving him another chore, commented "VICKIE! ARE YOU MENTALLY CHALLENGED FOR THAT COME HERE?!" I asked him what movie it was from and he told me 'Monster House." Even though it's echolalia he changed it up enough to make it HIS own unique language, which makes it functional echolalia... I guess! LOL!!!

Independence Day

My Fourth of July post is a wish that ALL people who are affected with a disability would have a life of freedom from institutional living; those who follow my blog know that I feel strongly that group homes are nothing more than scaled down institutions!

I will always fight for Jonathon's choice to live where HE wants! Not where it's convenient for the system to care for him!

I'm sure I will post more on this later since it is definitely my soap box!!

Have a healthy, happy, and safe Fourth of July FREE to make your own decisions regarding your life!
  

Don't Beat Yourself Up!

 "Don't beat yourself up about mistakes you've made; there are plenty of other people in this world who will be more than happy to do it for you." 
Years ago, another parent shared those words with me and they have carried me through many moments when I have felt like I wasn't doing anything right for Jonathon, or our daughter, Lindsey, for that matter.
Everyone has those days when they feel like the World's Worst Mom or Dad award winner. I would like to pass my friend's advice on to other parents but I would like to add to it... When you're feeling like the World's Worst Mom or Dad award is about to be bestowed upon you... make an extra donation to your child's therapy fund! It erases all your mistakes!   

It's...PROGRESS!!

My sister is getting her home ready for an appraisal, so Jonathon and I have been helping out. This morning I showed him the carpet staples in the stairs that needed to be removed. I gave him a screwdriver and put him to work while I went into the other room to get started on my project.
After a few minutes Jonathon came and found me, he didn't know the name of the tool he needed so he took his hand and made the motion for a pair of pliers. I gave him the pliers and he went right back to his job. Once done, he found me and told me he his chore was completed. I gave him the shop vac and told him to clean up all the staples, dirt, etc... As he was cleaning up he came across staples he had missed. On his own, he retrieved his tools and went back to complete the task at hand, pulling the staples and continued to finish up the vacuuming!  I am so very proud of him!
I have always known Jonathon was more of a physical work type person, but this job also showed me a huge growth in maturity. To stay on task without direct supervision, to find the tools needed to complete the task and go right back to work to finish is HUGE! The job must have taken him a good 45 minutes. That's 45 MINUTES of sustained attention to a task!! WOW!  He absolutely amazes me!

Three Minutes

This may seem insignificant to some people, but for Jonathon it meant PROGRESS!

Jonathon wanted Corn Dogs for lunch today. I told him "put the microwave on 3 minutes." Usually I would word it as "push 3, 0, 0, but I wanted to see if he could "get it" with different wording.

He looked at the microwave and his question back to me was "what does 3 minutes look like?"

WOW! For him to look at the microwave, realize he needed help and to choose that wording "what does 3 minutes look like" told me a lot about his visual thinking!

He was able to ask for help in his own words! Words not previously heard from me or anyone else helping him (echolalia), but his OWN language and he let me know he needed to SEE to understand!

Who would've thought Corn Dogs could be so exciting!!

Parents

I would never want to fill a parent full with false hope, so I guard my words carefully.

I'd heard a professional once say to a group of parents "tomorrow will be better than today." I couldn't believe a professional would tell parents that! There are no guarantees that tomorrow will be better... for anyone's life, autistic or not!

What I would like to tell parents of young children with autism... where you are at today, will not be where you are at tomorrow or many tomorrows from now. I would never guarantee it will be better, but it will be different.

Our kids do change and mature in their own unique ways. Look for even the smallest bit of progress. We are with our kids everyday and are used to their behaviors, so I do recommend a diary or some sort of documentation that can be looked back on so the progress can be seen.

We should also count our progress as parents. What are we, as parents, doing to educate ourselves so we can make changes within to help and understand our kids with autism? Too many times the child with autism is the one expected to do the changing and adapting. WHY? They're the one with the disability and in some cases mental retardation on top of the autism! Yes, we need to encourage progress and change in our kids, but also in ourselves.

I'd like to share a quote I found years ago by Helen Keller "I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble."  

Teacher's impact

I was reflecting on teachers who have had the greatest positive impact on Jonathon's life. The teacher who stands out above all others was, well, never actually one of Jonathon's teachers.
What could a teacher possibly have done to make such an impact in Jonathon's life when he never taught him? He, Mr Eager, took the time everyday to simply greet Jonathon. A simple "hello," "good morning," "How are you today?" made all the difference in Jonathon's middle school years.
Those years were excruciating for Jonathon, for our family. His behaviors were spiraling out of control due to puberty. A time when any teenager struggles, but for a child with autism who doesn't understand what is happening to his body it's even harder to deal with. To Jonathon, Mr. Eager's greetings meant I SEE you! I'm glad you are here! I enjoy you!  Mr. Eager had no expectations for Jonathon to meet. His greetings were not contingent on his behavior or academic performance. He was simply a friendly face in a turbulent environment. Jonathon needed to know someone wants me here and that person was Mr. Eager.
If, by chance, Mr. Eager ever reads this... THANK YOU! Two simple words that can't fully express our family's gratitude!

Summer

I LOVE summertime with Jonathon! His behavior is so much better in the summertime. He is doing awesome!

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!

slacker

I know I've been slacking! We went out to KY to visit our daughter, Lindsey, who is in graduate school out there. It was so good to see her. She is so busy! Most days she leaves the house by 7 a.m. and doesn't get home until 7 p.m. I'm glad she found some time to spend with us!
Jonathon was not a fan of KY. He was having technical withdrawls. At home he can go into the computer room and get on You Tube and watch videos, while watching his laptop, while watching his DVD player, while playing on his IPAD! Lindsey doesn't have that many techy gadgets! Plus his entire routine was turned upside down.
He did enjoy going to the lake, going to a movie theater where he got to eat his dinner while he watched a movie, and we took him to the horse races. He liked the races, but had a huge blow up in the parking lot. It was my fault. He started raising his hands in the air like a monster, so I reminded him that if we want to go out in public and do things, like the theater, and shopping and Disneyland we have to "be patient and kind and handle it." Those are words Jonathon is accepting of and we talk about all the time. Well, what he processed was you just told me to put my hands down, I didn't and now I can't go to Disneyland. I've ruined it and now I'm really mad at you!"   
Sometimes I get so frustrated with myself when I screw up the interactions with him. I should've known NOT to mention Disneyland at all! It's too important to him to be attached to his behavior. I'm really hoping the autism specialists out of Denver will be able to guide Tim and I through these interactions. Part of the process is to recognize WHEN we are headed into a situation with him and to turn it around as soon as possible... yeah, I think we have some work to do there!

Easter Hat

Jonathon has always been a lover of hats. When he was three-ish he inherited a cowboy hat once belonging to Tim. It wasn't long after that the inherited gift ended up filled with water and mud. The once nicely shaped cowboy hat was now fit for any backwoods kinfolk get together! Jonathon looked like a little mini Jed Clampet in that hat. I'm not sure how we lost the treasure, but it disappeared and he never really attached to a hat as much as that one, until three years ago.
Over the years Jonathon's hat collection has grown to include top hats, ball caps, winter hats, pirate hats,  even a somberero, but the most coveted hat arrived three years ago as an Easter present.
One of Jonathon's favorite movies has a character in it who wears a pith helmet, so I ordered one. I figured he'd wear it every once in awhile and change it out with his other hats. NOPE! He is now on his third pith helmet. He wears that hat everywhere! At first, I thought he wore the hat due to sensory issues, but that is only part of why he wears it. The true reason... it's a way for him to reach out to people. It's his own visual to draw people to him. He doesn't have the ability to go up to people and start a conversation, so he's adapted by wearing a unique hat that would catch peoples attention. He says "hello there" to people and, more often than not, they will comment on his hat and then he has the "in" he needs for a conversation. He will thank them for the compliment and if asked he will tell them "the Easter Bunny brought it to me." Heaven forbid when people ask if he's going on safari! He lets them know that he is not going on a safari, that it is an Egyptian pyramid hat and that he is going to the pyramids of Egypt!
I only realized it was his way of hooking people when I noticed a man with disabilities in a felt purple and green Doctor Suess hat. Talking to him I found out that he wears the hat because people notice him in the hat and then he knows people have seen him. He's not just passed by.
What a powerful lesson.
    

I can't do Glenrock! Update!

Out of the frustration of "I can't do Glenrock" has come, my favorite thing... PROGRESS!!!
Years of Jonathon's negative commentary about Glenrock has been pinpointed! I knew he didn't hate everything Glenrock, but getting him to realize that and verbalize it, is another story.
From our discussions of moving, Jonathon has narrowed his dislike of Glenrock to... "I like the Glenrock. I don't like the police mans. They will destroy me!"
I am thrilled for him, and us! Not because he thinks the police will "destroy" him! We've been dealing with the police issue for six years now. I'm not sure how to help him work through his dislike of the police, but we will continue to try to help him figure out that they're here for safety, not to hurt. For today though, I'm just going to enjoy the progress we've made!

I can't do Glenrock!

For years, and I mean YEARS, every time we have left somewhere deemed desirable by Jonathon to come back to Glenrock we have had some serious meltdowns. Our departure has always been met with “I can’t do Glenrock!” “Glenrock hates me!” “Glenrock is going to kill me!” And on and on and on! It’s common for these protests to be accompanied by his theatrical death performance of his imaginary noose or the death grip of his strangling hands around his neck. (Of which, I figure he’s not going to choke himself to death, but he may pass out and then I’ll have a few miles of peace and quiet! Harsh you may say… hey, a parent needs a little ray of hope in the middle of this death defying drama!)    

The normal four hour drive back from South Dakota has taken us eight. We have dotted our way back, stopping at every small town from South Dakota back to Glenrock. I can tell you exactly what back roads to take to cut major time off your drive! Where you’re most likely to run into the highway patrol, by the way… when I’ve been stopped and they see the drama king in the back seat I’m usually free to go. I think they realize my sanity is on the line and if they hold this road trip from hell up any longer I could possibly lose it and then they’d have two people in need of a white jacket swaddling!

I thought, well… I was hopeful, with our impending move would come contentment, but, alas, it is not to be. I started to talk to Jonathon about moving and what does he say, “of course, I like it here in Glenrock!” “I CAN live in Glenrock!” This is the same guy who has acted out death scenes because he was certain his return to Glenrock would be met with death?! I refrained from saying, Are you kidding me!? Years of him being a little shit anytime we had to come back to Glenrock and all the drama from the backseat of the car has been replaced with… could it be… tolerance for Glenrock?!

I must say I’m not convinced that the drama over Glenrock has ended. This is an example of what Jonathon says not reflecting what he feels. I’ll apologize ahead of time in case you see me flying down the road, driving like a bat out of hell, looking a bit crazed… we probably just left a “good time” and my sanity is on the line!

Donation

Jonathon and I went to the grocery store today. Most people hate the checkout line, but when you have a person with autism with you it takes the hatred to an entirely new level. For Jonathon it means he has a number of people in a small confined space to be his captive audience. He felt the need today to loudly announce his apologies for hurting my leg and hitting Daddy-Tim in the tally-whacker and he vowed to never do it again. Great. Thanks for that public commitment to the safety of my leg and Tim’s tally-whacker! As we’re checking out, the clerk asked me if I wanted to donate to people with special needs. Pretty sure the look on my face answered her question!

DRAT those videos!

I will be glad when I get this presentation I'm working on done! I've been asked to present to graduate students at EKU later this month. The proffesor has asked me to talk about the transition process from school to adulthood (about Jonathon's businesses). What we've found useful over the years from professionals etc...
When I'm attending a presentation I like to see what different people with autism look like. What were they like as a child and youth compared to where they are at now. It isn't that I think, oh that's what Jonathon will be like, but I want to see what could be possible for him. So, I decided to look through the old home videos... I know... this is the second time I'm writing about them so obviously I've got issues with them! I just don't know where to put those emotions that come up from watching the videos. I wish I could find a happy medium with my emotions of him as a baby/toddler. Part of it is I'm not a person to live in the past and spend a lot of time thinking about what could've been, so to go back there is very difficult. If I stayed in a place of what if's I would be neglectful of what is.
I've come to the conclusion that if I want to get through my presentation without blubbering I'd better stick to showing video clips of Jonathon in his early diagnosis and skip the pre-diagnosis videos! 
DRAT those videos!

Pet Funeral

Something I have felt strongly teaching Jonathon about is death. It’s the one thing in life we can count on happening. Plus, Tim and I both have very large extended families, so it’s something Jonathon will experience many times over his lifetime.  

Jonathon’s sister Lindsey has always been a huge animal lover. Once Tim discharged from the Navy and we were in a permanent home Lindsey wanted animals. Somehow we acquired a little black and white bunny. I have no idea what happened, but the rabbit died.

I went and got Jonathon and showed it to him. I wanted him to see what being dead looked like. I really had to work hard at not freaking out when he touched it…Ewwww! I am not a toucher of dead things! However, I needed to hold it together or my plan of teaching him that death was ok would fail big time.

Lindsey decided we needed to have a funeral for the bunny. She made the casket, she dug the hole, she, Jonathon, and I all gathered for the service. We were standing around the carefully selected grave site of Linsdey’s choosing – southeast side of the back yard under the lilac bushes, (of which Jonathon would chop down shortly after) so much for the perfectly selected grave site.  After a few moments of silence, no one saying anything, I said “Jonathon, do you want to say a prayer for the bunny?” My thinking was his bedtime prayer which is “Now I lay me down to sleep. I pray the Lord my soul to keep. If I should die before I wake. I pray the Lord my soul to take.” Ahhhh, nope. Not the prayer he chose. He recited “Come Lord Jesus be our guest, let this food to us be blessed!”

Oh my God! The drama that followed! Lindsey’s eyes about popped out of her sockets as she gave me her look of “DO SOMETHING WITH HIM!” followed by a big “HMPH!” I quickly tucked my face into my shirt so the grieving owner wouldn’t see me chuckling! Then, I believe, she yelled something about Jonathon ruining the entire funeral and ran off, into the house. I’m pretty sure that was the one and only family pet funeral we ever had!

ps - Lindsey has recovered from the trauma!

Work Buddy

Jonathon learned how to dust yesterday! I discovered the key to getting him to do his fair share of an assigned chore. Pair him up with a lazy peer! Why??? Because the lazy peer is going to make sure he does his fair share of the work! If I pair him with a peer who is more of a care taker, or motivated to get the job done, they tend to do the work themselves to get it over with. The lazy one is not about to do more than his/her work mate and so they are more than willing to keep Jonathon on task to get the job done!  :)

Big Sis

Today, in honor of Jonathon's sisters b-day I'm going to share a Lindsey story. We have a HUGE extended family we get together with often. On this particular day we had all decided to go swimming at a local rec center.
Jonathon was in autism heaven going down the same slide repeatedly with a ball. He liked seeing who would reach the bottom of the slide first, him or the ball. There were a couple of tween girls in the pool that day. The kind of girls who aren't actually there to swim. They just wanted to look good in the water.
Here came Jonathon down the slide for the 100th time, when one of these girls grabbed the ball he had been chasing all afternoon. Jonathon quickly said "ball please." The girl ignores him. He repeats himself, "ball please" and that little snit threw it at him!
My Mom claws instantly came out! I decided it wouldn't be appropriate for a grown woman to cannonball into the water and drown that little witch, so I set out to enlist Lindsey. She declined my idea, but says, "oh I have something better." She grabbed her cousin, Rachel, who was two at the time, and jumped into the pool. By now all of the extended family was lined up on the side of the pool intently watching to see what due this girl would pay! Lindsey pretended to "play" with her cousin, while she sauntered closer and closer to the offender and her cohort.
Once in place and "frolicking" right next to the tween girls I hear Lindsey yell out "OH MY GOD! RACHEL POOPED IN THE POOL! SHE POOPED IN THE POOL!"
Watching those two pool rats with a sheer look of poo panic was priceless! They could not get out of that water fast enough! So much for looking pretty! Had they stopped to listen or even look for a minute they would've heard Rachel saying "I not poop in the pool. I not poop in the pool!"
And they would've seen our family hysterically laughing so hard we could barely let the lifeguard know it was a false alarm!
Oh Lindsey! Your idea was so much better!   

The Looong Story

Last night was one of those looong nights that would not end! Who hasn't experienced a night where every time you look at the alarm clock you do the mental count down to the number of hours of sleep you could still possibly get if you stopped looking at the clock and went to sleep?!
I actually could have slept, but someone, JONATHON, talked all night long! It can be common for persons with autism to have sleep difficulties. Without night meds Jonathon does not get  restful sleep. I was a bit confused by his commentary, as I had heard Tim talking to him about taking his night medicine.
Throughout the night he vacillated between two scenes from Aladin, "I didn't have to, but did. I rescued you, you, Aladin, Jasmine and people and I rescued you, and I rescued you, and you and you!" and "Jafar is large and in charge!"
Finally around 1:30 a.m. I covered my head with the heaviest pillow I could find and fell asleep until 4:30 a.m. when Aladin, Jasmine and the people penetrated my pillow barricade!
Once up, I asked Jonathon why he talked all night long. He responded "I had a long story to tell." I don't know about a long story but it was definitely a repetitive story!
Upon further investigation it turns out Tim couldn't find one of his meds, so he didn't get it. Obviously the most important med that allows EVERYONE in the house to get a night's sleep!  

Travel Story #1 - yes there are more, many more!!

We are in a very difficult time right now, but anyone who knows me well, knows I don't stay in a place of sadness for long in regards to Jonathon's autism. I’d like to share a family story to bust me out of my funk!
Tim was in the Navy and we were traveling home to South Dakota on leave. We had decided to keep driving late into the night to take advantage of two sleeping kids. We were somewhere in Utah when we came around a corner and right in the middle of the road was a huge rock! Tim didn’t have time to swerve so we hit it. After Tim and I both got done having heart failure we felt relieved that the car seemed to be driving fine. Our relief was short lived when Tim noticed the gas gauge quickly falling closer and closer to the big orange E. The rock had punctured our gas tank! We were at least 30 miles from any town, in the middle of the night with two small children, one of whom had autism! This was not a good situation.
We made it to the next town and we were thankful! We found a convenience store and pulled into the parking lot. Our car was sitting at an angle so any remaining fuel poured out onto the pavement. We no more than got the car parked when I heard, “I don’t feel good. I think I’m gonna be sick.” Sure enough, I opened the door and Lindsey started throwing up! So, here we were at 2a.m. in a convenience store parking lot with fuel pouring out of our vehicle, a kid projectile vomiting all over the place and the other kid tired and cranky, wanting out of his car seat. We were a mess!
I must say that if you ever have to break down, Park City Utah is the place to do it! A police officer came by, took pity on us, found us a hotel room, and drove us to it. By this time it was close to 3 a.m. We smelled like fuel with an undertone of vomit. We were exhausted and looking forward to a nice comfy bed.
We checked into the hotel, got our room key, and walked down hall after hall after hall to get to this room. Tim put the key in the door, opened it… and the room was full of spare furniture! So we walked ALL the way back to the front desk. We got another room key. We walked ALL the way back through the halls. Tim put the room key in, turned it, pushed the door open and I heard him say, "Oh excuse me! I'm sorry!" just as a naked woman popped up from the bed! Lindsey’s eyes popped out of her head as she yelled “Daddy! That lady is naked!” Soooo, we walked ALL the way back to the front desk, again! We got another room key. We walked ALL the way back through the halls. This time, we paused outside the room door wondering what will door number three hold for us! Thankfully, nothing but the angelic glow of our beds!
By the time we all got washed up and hit the pillows it was 4 a.m. We were so thankful for a bed that night! The next morning we got up, the police came back, picked us up and took us to our car.  
Tim thought we should see if we could get the car started, so we could just drive it to the repair shop and not have to have it towed. I got in, turned the key and rrrrrrr ,nothing. I try again rrrrrrr, nothing. I decide to try one more time. As the car is protesting, and I was starting to lose my sunny disposition, I received directions from a little voice out of the back seat… “OPEN THE THROTTLE! AND KEEP IT OPEN!!” Jonathon was echoing the scene from Chitty Chitty Bang Bang where Truly Scrumptious is trying to start her car but failing miserably!
He has a way of bringing a smile to our faces at the most stressful of times!
P.S. We made it home safely to South Dakota!  

If...

If only love were enough...

Blessing

I am convinced the reason we cannot see our future is because we would never have the courage to live our lives if we knew the challenges we were to face. Life offers us both blessings and burdens. Which one an event in our lives becomes depends on ones perception. Even in our rough times Jonathon is nothing but a blessing.

Where?

Years ago, when Jonathon was first diagnosed we found ourselves at the beginning of the push for early intervention services. Jonathon got some, but definitely not what he should have. Here we are 18 years later, finding ourselves at the front of the pack again.

Where are the services for adults with autism? Where are the adults with autism? Certainly they aren't all living an institutional life? From the time Jonathon was 10 years old I have been asking those questions at every conference I have attended, fearful that we would get to adulthood and there wouldn’t be services. My fears are coming true.

Currently there is an even bigger push for early intervention services, which is great for those younger kids, but what about mine? I’m only one voice, but I want to SCREAM… ‘OUR KIDS DO GROW UP! WHAT ARE YOU GOING TO DO FOR OUR ADULT KIDS WHO AREN’T ABLE TO REACH INDEPENDENCE?! HELP ME! HELP MY SON! DON’T WRITE HIM OFF BECAUSE HE’S AN ADULT!'

I want more for my son than a group home or institutional environment, but without appropriate adult services and supports I feel his freedom slipping away.

I may be mad, I may be tired and I am heartbroken, but I will continue to fight for him to have a quality life.

How?

How? How do Tim and I even begin the thought process to send our child away?

Cure

The only times I wish there were a cure for autism is when it threatens to take Jonathon away from his family. Today I wish there were a cure.

The Bar Scene

Recently Jonathon was invited to sell his Kurmudgeon T-shirts at a bar. Tim and I were a bit skeptical. Did we really want to expose Jonathon to a bar environment? We weighed the pros and cons.

Super Pro – People are drunk, especially on St. Patrick’s Day, he could sell a lot of t-shirts!

He is 21 now and many 21 year olds do go to the bar.

Jonathon drinking was not a concern. He has picked up the occasional beer or wine cooler, that was sitting around, taken a swig and was not impressed!  I think his exact words were “YUK! THAT’S DISGUSTING!”

Cons - would intoxicated party goers be verbally mean to him?

Would he handle the loud music?

Would he enjoy the type of music?

Would he handle the yelling, drunken rants, and verbal altercations?

Would he be bothered by the cigarette smoke?

So, okay, weighing it out we had a TON more cons than pros, but we decided to take him.

It’s hard, with Jonathon, to know how much information to give him. Too much or too little and we have huge behavior issues and, believe me, we seem to screw it up often! We either give him too much too soon, or not enough too late! I had told him a few days earlier he would be selling his t-shirts. I waited until just before we left to visit about how he needed to behave at the bar. We have learned over the past year that he is more successful if he knows beforehand what his role is in a particular environment. Using this technique would not have worked a few years ago. He is at a point in his development where he is open to hearing, from us, what is expected of him. Now that I think about it… is it natural maturation on his part or ours for dealing with the autism?! J

I tried to picture things in the environment that would be attractive to Jonathon. The pool table and the dart boards… definite enemies of the evening!  When I visited with him I told him there would be dart boards and pool tables. I talked about how I knew he liked to play pool and throw darts, but his job that night was to sell t-shirts. If he wanted to play pool or throw darts, he and Daddy-Tim could go back a different night to play. His job was to stand by his table and sell his t-shirts.

I don’t drink, but a Prozac Smoothie didn’t sound like a bad idea for this bar room adventure! The bar was everything you’d expect from a rural Wyoming bar. A darkened smoke filled room where the corners were overflowing with cast off equipment. Wouldn’t ya know it… they put us in front of two dartboards! Unplugged dartboards, but still not a good situation!

I am very pleased to report that behaviorally Jonathon was absolutely AMAZING that night! He ignored the pool tables and dartboards! He stood by his table. We walked through the crowd so he could hand out business cards and his story about the business. He did a fabulous job! He even ignored a couple of crazy drunk chicks who got into a screaming match right by our table. Well, I guess I can’t say he ignored them. He was busy doing echolalia. If he noticed them I think he thought it was normal for that environment. Everyone has to yell at each other just to be heard.

Sale wise… we sucked. He sold three t-shirts and we donated two to the Hippo-therapy program that was fundraising that night. Oh well. What we gained that night was more valuable than money. Jonathon gained increased access and knowledge to the world. It isn’t easy to take/expose Jonathon to new situations, but is it in his best interest? YES! It would be easier to stay home with him and keep him in a predictable environment, but life isn’t predictable. I feel strongly that for our kids to understand the world they have to be IN the world as much as possible! Parents who avoid taking their kids to the grocery store, or Wal-Mart, or where ever need to ask themselves – who is it easier for to stay home? The parent or the child? My message to parents… get off your asses and take your kids out in the world!!   

WHY GOD WHY???

God has forsaken me! Well, technically He has forsaken my loofa! It wasn't long ago that I asked God to protect my new loofa from Jonathon... sadly... the loofa was found lying on the shower floor this morning. Definitely a sign of violation. It was with a heavy heart that I called Jonathon downstairs and asked him "what did you use the loofa to scrub?" In his deepest man voice, the words I dreaded... "to scrub my tallywhacker." Ugh, well of course he did!

Fitting together

My family just returned from vacation. Tim, Jonathon and I flew into Las Vegas from Denver. Lindsey flew in to Las Vegas from graduate school. It was the first time the four of us have been back together for an extended period of time since Lindsey left for college six years ago. I don’t think any of us were prepared for how different our family would be once we were together again.

Linds has been out of our home for six years now so coming back into the fold with Jonathon when she isn’t used to his behavior was… different. It was different for all of us. It was definitely a learning experience. We had to figure out how to be together again as a family .  

I was stressed worrying about giving enough time to Lindsey while caring for Jonathon.  Each of us had our “bitchy” moments and needed to take a step back. We needed to learn how our family “fit.” Lindsey and I visited about the difficulties of trying to be out as a family and a part of the world when Jonathon struggles so hard to handle the world. We concluded that there are no easy answers or fixes. The best we can do for each other is be conscious that each of us comes from a different, unique perspective. We won’t always agree but we will always get through our challenges together, as a family.   

Disneyland

It was about 18 years ago when we last visited Disneyland. Jonathon was three at the time and had just been diagnosed with autism. We were in that stage when the diagnosis is so new that it sounded awkward, uncomfortable, coming out of our mouths. We knew it was true, but speaking it released it for the rest of the world to know. Saying that word, autism, somehow made it even more real.  

We were struggling with Jonathon’s behavior; trying to enjoy our visit. I thought he’d like the submarine ride so we embarked for our underwater voyage. We didn’t even get submerged before we had to have the ride pulled back up to the surface so we could disembark. I broke down in tears. Here we were in the “happiest place on earth” and our family didn’t fit.

Fast forward 18 years. We’ve planned our first family vacation EVER!  Tim and I are hopeful that our family has reached the point of being able to go back to Disneyland and be a part of the Disney celebration… hopefully anyway.

The morning started out a bit rough. I pulled Jonathon aside and reminded him that his job was to “handle it.” Handle it, are the words he has chosen to use when he needs to be patient and calm. Once on the shuttle headed to Disneyland he settled down.

Our first ride was of course, Pirates of the Caribbean. Jonathon has been talking about that ride for as long as we’ve been saving for this trip… a couple of years! He was in complete awe! He sat through the ride and was completely still and quiet, studying it, taking it all in. Each new ride was better than watching him open a gift. His world, the world of his movies was coming to life for him and we got to share those moments with him.

Tim and I sat together on one of the rides with Lindsey and Jonathon ahead of us. Tim and I visited about how far we’ve come as a family… the wave of emotions that hit me was overwhelming and I found myself in tears, but this time for a very different reason. We moved from ride to ride, we sat and had lunch, we shopped, we did everything all the other families were doing… and it was absolutely wonderful!     

Please God!

Bought a new loofa... God if you could keep an eye on Jonathon so he doesn't scrub his behind with this one it would be VERY much appreciated!
Thanks, Mom-Vickie

Happy Anniversary

It’s been 26 years ago today that Tim and I were married. That day, when we were so young and excited to start our lives together, seems so long ago. I’m convinced the reason people cannot see their future is they would not have the courage to live their lives if they knew the challenges they were to face.

There have been plenty of times when each of us could have decided to walk away from our marriage, but we didn’t. We chose to stay and work through whatever challenge we were facing. For everything we have been through over the years with Jonathon… there is no way either of us could have done it alone.

Thank you Tim for being my partner and for sharing the joy our son brings to both of us.

I love you.