Posted by unlockingdoors on August 8, 2012
I came upon this article posted on my Facebook wall this evening and, naturally was outraged. It is a story of a 23-year-old man with Autism who has a life-threatening heart condition. The only treatment for this uncurable condition is a heart transplant which he has been denied because of his Autism. Yes, his Autism. He is not a smoker, nor a drinker. He has not acquired this disease because of any lifestyle choices he has made. It is genetic condition he inherited from his father who died from this when he was only 27-years-old.
This is absolutely unacceptable. To deny him a necessary treatment of this nature because of his Autism is blatant discrimination.
I am posting the link for the petition here. If you are every bit as appalled by this then please sign it and spread the word.
Posted by unlockingdoors on August 7, 2012
Well, summer break is quickly approaching it’s end (OMG!) and we are beginning back-to-school preparations. One of the things on the to-do list is hair cuts for all three of the kids, especially for the boys. Let’s just say, if this doesn’t happen soon, we are going to have a bunch of Sasquatch hunters camped out in our front yard with telephoto lenses just waiting for one of them to come out the front door for a photo op.
Hair cuts aren’t a problem for Will. He absolutely loves to get his hair cut. There is the (nonstop) chatting with the hair stylist, getting to decide on whether or not to go ultra-short or just trim the haystack to continue the Luke Skywalker look he’s been going for lately, the cool spinny chair, the smells and movement of the salon. All of it.
Joel, on the other hand…. Yikes.
Our littlest guy has never once been to a salon for his own hair cut. I don’t expect it to happen any time soon. So, that means he is resigned to having a crazy scarecrow ‘do courtesy of his own mum and dad. When I’m cutting his hair, I’m not really going for a specific look. My only goals when cutting his hair are (1) cut his hair and (2) not cut him (or others) with the scissors.
We’ve tried having one of his hold him down while the other one quickly cuts whatever hair is sticking out, but this is dangerous because he will not sit still. At all. So, I’ve had to get creative in my approach.
What I do is get Joel interested in a movie or t.v. show and then stand behind him with a pair of scissors and slowly snip away at the hair on the back of his head while he is distracted. This is extremely hit or miss because he isn’t stupid. He can hear the scissors and feel me messing with him. It looks something like this:
Once I’ve eventually cut the hair in the back and as much on the sides as I can, I then have to resort to asking Husband to hold Joel down while I cut the rest of the hair on the sides and in the front. If Joel is especially wiggly, we have to have Maya help hold his hands. This doesn’t take anywhere near as long as the first part, but it is definitely stressful. I “look forward” to going through this either this week or sometime next week, depending on how long I procrasinate.
So, fellow Autism parents out there, how do you handle hair cuts and other grooming needs with your little cuties on the Spectrum? Or, do you have any stories about this you’d like to share? Also, if anyone on the spectrum is reading this, what worked or does work for you? I need all the help I can get and any input is appreciated.
Posted by unlockingdoors on August 6, 2012
I was going to write this long review for this fantastic movie, but then I remembered I’m not a movie critic. I think the trailer will speak for itself.
Let me just say, this movie is the most accurate and heartfelt portrayal of Autism I have seen so far. Or, maybe I should say this is what Autism looks like in my house. (If you have Netflix, you can stream it from there.)
Posted by unlockingdoors on August 1, 2012
I had already been toying with the idea of baking up some chocolate chip and walnut scones today, but decided to take the plunge and make them when Will came wandering into the kitchen after lunch anouncing he was still hungry. I asked if he would like to make scones with me and be my baker’s assistant. He was really excited about the idea so we washed our hands and got to work. He helped me measure out the flour, baking powder, salt, etc. He pushed the button on the food processor when we cut in the cold butter (cause I sure as heck wasn’t in the mood to do that part by hand!) and brushed the pre-baked scones with milk before we popped them into the oven. We decided to eat our scones together and sip some hot tea like they do across the pond in good old England.
While they were baking and I was washing some of the dishes, Will, in an entrepeneurial spirit, talked about how he wants us to open up our own bakery and work together. Then, he asked if we could take pictures of our process and post them on Facebook. I suggested he “paint” a picture of us having our tea party and eating scones and I would post them on the blog. So, he sat down and learned how to use the Paint program and this is what he came up with:
As you can see, I’m the redhead on the left, Joel is behind me lining up ripped-up pieces of magazine, Maya is in the front, center and Will is on the right. This picture, and the actual event of us sitting together and sharing tea and scones, made my day like you wouldn’t believe.
Sometimes I worry that Will feels less important in the grand scheme of things. For starters, he is the middle child, which, from what I understand is an unenviable position. (Anyone thinking Jan from the Brady Bunch? Marsha, Marsha, Marsha!). Add to that the fact that his younger sibling has been diagnosed with Autism and requires so much attention. Holding that hand of cards can’t be the easiest or most fun for a nine year old boy. Of course, Husband and I always make a point to express our love for all three of the kids on a regular basis and to find fun activities to do with them to stimulate creativity and learning, etc. But, because Will and I don’t have a whole lot in common, finding things to do together that we both will enjoy is often tricky. This was definitely a huge success and I think we will have to schedule more tea time dates in the future.
By the way, those scones were awesome! Can’t wait for breakfast tomorrow morning. 🙂
Posted by unlockingdoors on July 28, 2012
Yesterday was Husband’s birthday and I wanted to post this then, but we were pretty busy getting him enrolled for the upcoming semester. So, I’m doing this belatedly. Believe me when I say this, I always try my hardest to give credit where credit is due, but I want to use today’s blog post to focus on some truly wonderful qualities my husband possesses that just don’t get enough recognition. They are as follows in a top ten list:
Top Ten Reasons Why My Husband Rocks
10. Husband is an all around good guy. I know that sounds pretty vague, but let me ellaborate. He and I were returning home from a grocery shopping trip a couple of weeks ago when we saw a car pulled over onto the shoulder of the road and a woman walking away from the car. It had just started really raining and Husband couldn’t stand the idea of the woman walking in the rain, so he turned around and headed back to see if she needed assistance. It turned out something had blown out of her car window and she was looking for it with two other people who were riding with her. They thanked us for trying to help and we drove off. If they had needed help, James would have done it. He is just that kind of guy.
9. As it says in #10, Husband goes shopping with me. I can’t begin to tell you all how much I hate grocery shopping. It is so much better when he comes along.
8. He’s handy with the cars and other mechanical and technical contraptions. This is really helpful, because I am none of those things. If the car stopped working, I’d be screwed if it weren’t for Husband. This also applies to our computers, internet, dvd players, Joel’s IPad, cell phones, and even some of the more basic things that go hand-in-hand with the blog. When it comes to these things, I am the human equivalent of a sea sponge. It’s really pathetic.
7. Not afraid to get his hands dirty. We deal with a lot of gross stuff in our house with three children and a dog, and James is not the squeamish type. He changes pull-ups, cleans up after intestinal/stomach upset, you name it. A lot of this is due to his medical experience. As a Surgical Technician, he is pretty used to any and everything the human body can throw at you. He’s seen some pretty icky things and it takes a lot to really make him weak in the knees.
6. Eye candy factor. Oh yeah, it has to be said, the man is pretty attractive.
5. He is a veteran of the United States Navy. I’m pretty proud of this factor. He served eight years in service of our nation and I will always be very greatful to him and all other service men and women who have also served. THANK YOU!!
4. Great father. Together, he and I are raising three wonderful children, but he is not Maya’s biological father. Maya is the product of a my first marriage and her biological father has not been in her life since the divorce. James has been a permanent figure in her life since she was four years old and he has never referred to her as his stepdaughter or her as Will and Joel’s half-sister. As far as he, Maya and I are concerned, he is her Dad and we are all very happy with this arrangement.
3. Hard-working. As I sit here writing this, Husband is at work where he will be until 11:00 tonight. He will then work a 12 hour shift tomorrow and then again on Sunday. When he isn’t working during the week, he is a full-time student working toward his Bachelors degree in Computer Science. I could not be more proud of his efforts and thankful for the time he spends making sure our family is taken care of.
2. Trust-worthy. James is just one of those people you can rely on. He doesn’t spend all hours of the night out with his buddies drinking and partying. He prefers a nice quiet night home with me and the kiddos where we can have family movie night or maybe play his video games. If he does go out, I’m usually with him or he takes one or all of the kids to hang out.
1. He puts up with my crap. And, believe me, there is a lot of it. I’m obnoxious, weird, socially inept and I hate to go grocery shopping alone. It takes a person with a lot of patience and inner strength to deal with me. So, I am greatful that he has found it worth his while to stick it out with me all these years.
So, Husband, listen up. Thank you for being so wonderful. I love you and appreciate all you do. To show you just how much I mean this, I drew you a picture; a work of art worthy of placement in the Louvre if everyone were somehow rendered blind because of an unexpected disaster. Happy Birthday!!
Posted by unlockingdoors on July 27, 2012
Yes it’s my birthday. I’m 19 years old again. Enough discussion about that. I’m sitting here with a guitar strapped around my neck and Joely is bowing the strings with a piece of uncooked spaghetti. I think this could be the beginning of a new fad in music. I mean if some of the current acts out there can make it with what they are doing then we surely have a chance.
The other night I was on my way home from work and the family called and stated very boldly that they wanted cheeseburgers and chocolate shakes. I’m not not a brave enough man to say no to this and expect to make it through the front door unscathed, so I complied and headed to the nearest Braums. Later on we all had put a fairly good sized dent in the meal when joel shoved his plate away, which had most of the cheeseburger and fries left on it, and walked away from the table with his chocolate shake. You know it’s strange how temperamental he is about ice cream. I’ve never known a kid to turn down ice cream, but he’s done it before. This time not so much. No big deal, he ate some of his food and that’s got to be worth something. Soon I finish my meal and announce that I’m retiring to the living room to start a meaningful relationship with my recliner for the night and watch a Community on Netflix. And everyone else leaves the table in a few minutes. Joel gets a bath and heads to bed, Shell retires to the Bedroom to read. I hear something eating in the kitchen, more like inhaling food. Before I can get up the dog comes trotting through the living room, burps and glances at me like a teenager who’s an hour late for curfew. Awesome, Jack just ate Joel’s hamburger from the table.
Boy he’s really interested in these guitar strings.
Moving on to something more recent., for those parents out there with a non-verbal child. I’ll bet it’s happened to at least a few of you where you dream that your child is speaking to you. I had a dream that we were watching a National Geographic type show where they were doing something with Lions. Maybe hunting, maybe not. There was definitely a gun involved, and a Lion of course. And all of the family was present. One of the Lions got shot and Joel professed “DOooon’t shoooot the DOoooOOG!” And of course you think, him being non verbal, it would surprise me that he’s making a statement at all. That’s not what I notice in the dream, I notice that he’s mistaking the lion for a dog. In the dream I look past the verbalization of something offensive to Joel and address the fact that he’s overgeneralizing. Interesting, huh?
I’m hopeful that Joel will speak someday, but I’ll be extremely satisfied if he can just communicate with us. I think with as many sounds as he makes though someday we will see, excuse me, hear him speak. We all believe that he has vocalized in certain situations, outside of his meltdowns. Like when he’s excited about going somewhere, or when he really wants a bowl of cereal. Both Shell and Joel’s para swear up and down that he’s told them to “go”. I’d take that, outside of my dreams.
Now if you all will excuse me, we have a concerto to write. I think we’ll call it “Spaghetti on six strings in g minor.”
Posted by unlockingdoors on July 26, 2012
Posted by unlockingdoors on July 25, 2012
Before Joel was diagnosed with Autism, we were often mystified by his behavior. Why was he spinning all the time? Why was he flapping his hands? Why was he walking on his toes? None of it really made much sense. Of course, some of it was explainable. Kids like to spin and move around a lot. When I was a child, I liked to spin and cavort. Granted, I had a threshold where I would become dizzy and fall down. Joel, on the other hand, can spin and spin and it seems as though he never finds that threshold.
Now we know why Joel spins and flaps his hands and walks on his toes. When he does these particular activities, his brain receives a level of stimuation required to keep him comfortable so that he can better focus on, and relate to, the environment around him. We know this through scientific investigation, testing and research. Here in our household we strongly support the scientific method to explain all of life’s mysteries. It is a simple, yet sophisticated system that has given humankind the combustible engine, telephones, space travel and the discovery of the Higgs Boson.
Having said that, I do also have a love for whimsical notions. I found this as a meme on Facebook last night while I was wasting time and it made me think of Joel and how he spins:
There are some days when it is fun to believe that maybe, just maybe, Joel is really on a mission to travel through time. It’s really not all that hard to believe. After all, there is speculation that Albert Einstein and Sir Isaac Newton had Autism. Take that information and add it to what Solodialogue posted recently on her blog about a possible connection between Autism and Evolution, and it really isn’t so hard to believe the amazing things people with Autism are, or could be, capable of.
Joel is limited every day by his own disability or by us in that we stop him from doing many things that he enjoys that are extremely dangerous. Because of that, I don’t want to place limits on his potential or make grand statements like “He’ll never be able to do this or enjoy that.” The boy is only five years old. We have no idea just what he will be able to do in five more years, or ten or twenty.
(BTW, this meme is from a comic called xkcd which is now one of my new favorite things.)
Posted by unlockingdoors on July 23, 2012
You know that scene in Lord of the Rings when the Fellowship is being formed at Elf Central and they are discussing how to destroy the ring and Boromir says with his hand on his forehead like he’s talking to morons, “One does not simply walk into Mordor and destroy the ring.” ? I felt a little like Boromir yesterday as our family was getting rounded up to make a shopping trip in Tulsa and was informed that Husband and older son, Will, had made plans for us all to go to McDonald’s to play on their indoor playground. My first reaction was “Um, no, Joel will have a huge meltdown when we leave and it will be a huge disaster.” When you have a child with Autism and sensory issues, one does not “just go” to McDonalds for a little recreational playtime.
I thought we were decided on the issue, but as our trip progressed I could see that Husband didn’t quite want to give up on the idea. After all, Joel would have a great time while he was playing and he isn’t overwhelmed by strangers or loud sounds. It is also a recommended therapy for proprioceptive input. The only thing we had to worry about was an exit strategy. So, I said, “What the hell? Let’s give it a try.”
We finished our shopping trip and located a McDonalds that also had an indoor playground. Before exiting the car, we took a moment to find some mental clarity and worked out a plan. James would go to the line and order us some french fries and ice cream while Maya, Will and I would go straight to the playground area. Maya and I changed Joel’s pull-up in the family bathroom, washed his hands, removed his shoes and set him free to roam. He took to that thing like a pro. He climbed and slid down the slide and had a blast. The other children ran around him and he barely paid them any mind. He just did his thing.
Will, on the other hand, struck up a bit of friendship with a few vey rowdy boys his own age, whose parents/guardians seemed to be nowhere in sight. It turned into a bit of a Lord of the Flies scenario and at one point, I could have sworn I heard someone shout, “Kill the pig!” but that was probably just my sometimes-overactive imagination at work. Will was quite the protective brother and at one point, Husband and I overheard this exchange between him and one of the other boys:
Will: Hey, be careful of my little brother. He is Autistic.
Other Boy: Yeah,my little brother is a little like that, too.
Husband and I got a little smile out of that. Meanwhile, Joel came out on a couple of occassions to inspect the world “outside”. He did try to get a little friendly with another family who was eating. I pulled him away before he could grab anything and apologized. The mom just smiled and said it wasn’t a problem. I brought him back to our table and he sat down with James and ate some french fries and watched a video on his IPad. We decided that that was probably a good time to try leaving the playground and we geared ourselves up for a meltdown.
James picked Joel up and carried him out the door to the car. Maya and I gathered up our things and Joel’s shoes and we met up with Husband at the car. Joel not only got into the car seat without a hitch, he even helped James buckle him up and gave him a kiss before James closed the door and got into the driver’s seat. We completely avoided a meltdown…
…until we got home. We pulled into the driveway of our house, Joel realized we were home and our trip was over and he began to cry. His crying became a meltdown.
Once inside, James and I tried using weighted items to calm him. That didn’t work. We ran him a bath and he slowly started to calm down. Then, Husband had the most brilliant idea yet. He pulled out a can of cheap shaving cream and sprayed some on the shower wall. Joel immediately stopped crying and was fascinated. He squooshed it in his hands and had a blast. James squeezed some directly onto Joel’s palm and Joel made it float on the water. After that, the meltdown was over.
So, I’ve come away from this with a little perspective. Sometimes, you have to take chances no matter what the expected outcome may be. You just may be very pleasantly surprised. I’m expecting we will be making this a regular-ish activity for our family, especially while the temperatures are as extreme as they are now. (Temperatures in the 100’s here in our neck of the plains!) I will also work on trusting others when they have an idea that I may think is crazy. And, last but not least, I will be making sure we are fully stocked up on cheap shaving cream!
Posted by unlockingdoors on July 20, 2012