Autistic People Should... Be Allowed to Just BE

What would you do, if you were told that you were not allowed to listen to your favorite music, or read your favorite book, relax in your favorite chair or do any of the things you enjoy and help you feel at peace with the world? How would you feel if you were only allowed to eat food that burned your mouth, or only could wear clothes that were itchy or painful to wear? What about if everyone around you seemed to speak in riddles and inside jokes and you never felt able to participate in the conversations? Think about this for a moment, really think about it. These may be all things you take for granted and not even realize it. How uncomfortable would you feel just being? Always uncomfortable, overwhelmed perhaps even and with no way to help reset yourself from all of that input and irritation. Welcome to the world of autism.

I am writing this and hope it may be included in the flash blog being created to change the auto complete options when a person types 'autistic people should' into Google or Bing. Go ahead and do it, see what options you get. It's sad, it's scary and it's a little sickening, and no different from what people of minority ethnicity or alternate sexual orientation have dealt with in the past and fought tirelessly to eliminate. Here's the difference between those groups of people and people with autism; autistic people can't always fight for what they need because being part of the world and society can be painful for them, it can be a sensory nightmare and leave them filled with anxiety and physically and emotionally drained. Therefore, it is up to us 'normal' people to advocate and fight the fight that they may have difficulty fighting on their own. Granted there are many who do fight and fight very well, and they should be commended and everyone should listen to what they have to say. But at the end of their speech if they need to flap their hands, rock in their chair or step outside to walk in circles and hum, don't stare, this is their way of dealing with the emotional stress of speaking in a public forum, just as any of us might go out for fresh air, or go the the restroom to finally be able to relieve our bladders, or even have a cocktail to reward ourselves for a job well done.

When it comes down to it, NT and autistic people are not that different from one another. We all feel stress, we all feel pain, we all can feel fear and anxiety and we all deal with it in our own way. So what if an autistic needs to flap their hands to help them process the sensory stimuli all around them, they don't say anything about your foot tapping or leg jiggling, and essentially it's the same thing. So next time you happen to see someone pacing in circles, rocking in their chair, flapping their hands or hear them humming, don't stare. Just think of your favorite relaxation activity, and how you would feel if people stared at you while you were doing it and thought it was weird. NT people are allowed to just be who they are, the same human rights belong to autistic people also, because they are human, (no, they aren't aliens) and they have the same thoughts and feelings as any other human, and that being the case, autistic people should be allowed to just be. Because that's what the rest of us expect from the world around us, it should be the same for autistic people too.

Musing on current events

I must admit, when the thought that my son has autism first became a possibility to me, I didn’t know much about it. I hadn’t even see ‘Rain Man’ all the way through (I didn’t care for Tom Cruise). When his diagnosis came down, finally, I wasn’t devastated by it, because I had been tossing around the idea in my mind for about a year before we came to figure out where he could be evaluated. Disability didn’t frighten me, I had an older brother with cerebral palsy, what really frightened me was that my son would never speak, would not be able to have friends, would not be able to read, write or go to school. Would never call me momma or tell me he loves me. Basically, that he would not progress beyond where he was at the age of 3 when his diagnosis was first given. However, getting the diagnosis allowed me a path of where to go to do what was best for my son. I suppose to a degree that I am fortunate as they told me he has mild to moderate autistic disorder, so many things may come easier for him then for those children who are more severely effected.

The first year or so after diagnosis were the hardest. We had begun teaching him sign language, even before his evaluation, to help him communicate with us, something he hadn’t been able to do since he was 14 months old. The meltdowns were hard to deal with and I would sometimes end up crying right along with him. I wanted to help him, but I just didn’t know how. As he’s gotten older, his communication skills have improved, the Early Intervention program and Special Education Pre-School were invaluable to me. The therapy we took him to didn’t have as great of an effect, simply because they switched his therapist 3 times in 4 months and every switch meant going back to square one because they disrupted his routine and he didn’t respond well to that disruption. In the end we decided it was too much stress to continue the therapy (having no car and only really available for therapy one day per week made it really difficult and added to an already stressful situation). But I had learned some good tricks to use at home and so I worked with him myself. Teaching him letters, reading to him, painting, coloring and playing with sensory toys and objects.

Amazingly, over time, he improved. He became less sensitive to things that before he couldn’t tolerate at all. He can speak much better and even now, after starting kindergarten, is beginning to use pronouns correctly and making statements in the first person rather then the third person, and his echolalia has diminished. But I wasn’t ever aware of just how much progress he has made, until one day we were watching old videos of him from one, two and three years ago and seeing how different he was. He still seems like the same, happy, sweet, funny little boy he always was, but just like with my older children before him, his progress has been gradual and not really noticeable over time, except by looking back in time at how he was then. Having raised 5 NT children, and still raising my youngest who is autistic, the only difference between the progression they all made, is the length of time it’s taken my youngest to progress. And I’m probably a little more aware of his actual progress then I was with my older children, because with them progress was a given, but that isn’t the case with my youngest child. And constantly watching him and working with him kind of leaves me ‘in the moment’ with him rather then looking at retrospectively to see how far he’s come, until we take the time to watch old home videos and then tears come to my eyes because he has come a long way. Even his meltdowns have diminished, in fact they began to diminish as soon as we had given him a tool to communicate with us. I just didn’t realize they had until I took the time to look back and actually notice. I suppose part of the reason I spend so much time in the present with my son, is because he is my last child. I wasn’t supposed to be able to have him so never expected him to come along. But since he did, I was determined from the moment I first knew about him to spend as much time with him, and give him the best experience in life that I could. Little did I know at the time exactly what that would mean for both of us.

Basically, my son is who he is and has been that way since birth. There isn’t really anything that would make him someone different, and he would be very different without autism. But I wouldn’t want my NT children to be anybody but who they are, so why would I want that for my youngest, just because he is autistic? I think that is the core of everything relating to autism and acceptance. This wonderful, charming, intelligent child, is not a trophy meant for me to show off. They are an individual, meant to be who they are and it isn’t up to me, or anyone else to try and make them someone different. Everyone has their own special talents and skills that they will excel at. My oldest child is a great artist, my youngest has trouble holding a pencil or crayon. However, my youngest as an amazing ear for music and rhythm and has picked up numbers and basic math concepts much quicker then my older NT children. With the proper support and encouragement, he could very well be a music and math prodigy. Of course, I will still love him even if he isn’t, because he is my son. No talent, or lack of talent, or diagnosis for that matter, will change that, nor diminish his value in my eyes.

Moms Who Vax: Moms Who Vax: "But I Saw it with My Own Eyes!"

Moms Who Vax: Moms Who Vax: "But I Saw it with My Own Eyes!": By Karen Ernst A mother's connection to her children is powerful. She is the first to tell when the baby needs to be fe...

A new worry...

I had my 42nd birthday last month. Just before my birthday, I went to see my GP for a pap. It had been a couple of years and I've not ever had an abnormal one. This time, I did though. So what is the next step with an abnormal pap? Referred to a specialist, in this case, a gynecologist for a colposcopy and biopsy.

Since it was near the end of the month when I got the referral I had to wait until after the first of October to make the appointment so I'd be able to buy bus tickets. My appointment was set for October 10th. I'm so grateful for technology and the Internet, I was able to complete my registration paper work and history online so I didn't have to show up a half hour early for my appointment to do it.

Like anyone who is inquisitive, I started researching what causes abnormal paps. It would seem the most common cause is infection from HPV. I don't know if I have that though, I've not actually been screened for it, but they are assuming that I have it simply because it is the most common cause. I also looked up information on what a colposcopy is so I'd know what to expect. Of course most of the information is all very clinical so it still left me feeling quite anxious. Basically though, it's an in depth pap, where they view your cervix through a colposcope after applying a vinegar and ascorbic acid solution that allows the abnormal areas to show up white. They can then take a sample of the white cells, a procedure called a biopsy, and send them for testing to the pathology lab. They also use a special spatula to scrape inside the cervix and around on the outside as well to check if there is abnormal cells inside the cervix too.

The week leading up to my appointment, I began having nightmares. Not normal nightmares at all, but things like missing my bus that I needed to take to get to my appointment on time, learning that I have cancer and losing my hair and spending my days throwing up from chemo. Being unable to make meals for my family or do laundry or go shopping or do any of the things that right now are a pain in the posterior, but I guess I take being able to do them for granted.

On the day of my appointment, this past Wednesday, I got up and immediately started getting ready. I couldn't eat, my stomach was doing flip flops and I didn't trust it to be able to keep anything down. They had told me to take ibuprofen prior to coming to ease the cramping would experience during and after. That meant I had to eat something, so I had a couple slices of toast, but I couldn't manage anything else. I got Viktor on the bus to school and sat around trying to kill time before I had to leave. The bus schedule here is so messed up, I had to leave to hours before my appointment time to ensure I'd get there on time. I had it figured out and I left my house about 6 minutes before the bus was due. It only takes a minute or two to walk to the bus stop, but I was jogging there just to give myself that little bit of extra time. That proved pointless because the bus came 5 minutes before it was supposed to; nightmare number one came true. I missed my bus.

I came back and had to refigure everything. Called the doctor's office to let them know what happened and they said that would be fine, I'd only be a few minutes late, they could still see me. Except the next bus, that I made sure to be out there 10 minutes before the bus was due, but it was 11 minutes late. I was able to make the next transfer, but the trains were also late. The one I was supposed to catch, which would get me to the final stop where I'd walk the last mile was supposed to drop me off at 3:21PM. It showed up at the stop at 3:23PM, and I didn't have the means to call and let them know the train was late.

I got off the train, walked as fast as I could to the office, and they were almost not going to let me in that day. I would have made a stink about it, because I was not going to go through this again on another day, not to mention that I had would be wasting the bus tickets for no reason. I was only 5 minutes past the time I was scheduled for (they wanted me there 10 minutes early to sign paper work). But the receptionist talked to the doctors and they agreed to see me. I signed the papers and sat down and waited, anxiously.

After about ten minutes they called me back. Had my weight taken (I've lost three pounds since I was last weighed) my blood pressure and went over my history to make sure everything was correct. Then she left while I disrobed. I waited naked from the waist down for about 15 minutes and the doctor and nurse and a med student entered. It wasn't a large room so it felt really crowded with so many people in it. But they got me set up with my feet in the stirrups, they set up the colposcope and got to work.

They applied the vinegar solution, which was a little burny stingy and immediately started talking about the lesion they could see at 1 o'clock. They saw what they said was some kind of pucker at 11 o'clock, I have no idea what that means. Then came the endocervical scraping. That was unpleasant and felt not unlike having your membranes stripped in the last days of pregnancy in an attempt to stretch the cervix and possibly cause enough irritation to start labor. So the cramping I experienced was very similar to early labor contractions. Then they put a local anesthetic on my cervix and told me to give them a really big, hard cough on the count of three, so I did and that was when she took the biopsy tissue. She then applied something to stop the bleeding, said I would be crampy for a few days and bleeding for 3 or 4 days and to not have intercourse for a couple of weeks and let them know if I developed fever, chills, heavy bleeding or abnormal discharge. They told me they would have the results in 7 to 10 days and would call me with the results and to make an appointment to discuss our strategy. They said I was free to leave, left the room so I could dress and I headed home.

Now it's a waiting game. It's Saturday night, I'm still spotting and the cramping has diminished, but still gets me if I try to do too much. I went to the store with my son, Viktor, to get his Halloween costume yesterday and started bleeding again (it had stopped the night before) and began to cramp pretty badly again. So today I spent most of the day sitting or laying down, except when absolutely necessary. I think the worst thing in the world is waiting. I just want to know what the results are, what happens next and have this thing over and done with, put behind me so I can continue with my life, which is really other people's lives since my purpose is to make sure they are taken care of. But then I keep thinking, they didn't screen me for HPV, they are just assuming I have it since it is the most common cause of abnormal paps and cervical cancer. But what if I don't have it? If I do, this could actually be a regular occurrence for me for the rest of my life. If I don't, it could just be a one off event. I don't even know if I could ask my GP if she still has the sample from my pap done last month and if it could be screened for HPV. I suppose in the long run that part of it doesn't matter, just the results of this and what it means for the near future.

I'm scared, I'm impatient, I don't want to wait. But unfortunately there isn't a lot of option for me. So the soonest I could hear anything is next Wednesday, but I might not hear anything for nearly another week after that, because I'm pretty sure they wouldn't call me on a Saturday so I'd have to wait until the following Monday if I don't hear by next Friday. Ugh! I hate waiting, did I mention that? Yeah, I know this is rambling, but I just took a percocet so I'm a little floopy right now. I think I'm gonna call it a night and get some sleep. My son, Viktor is going to a birthday party tomorrow! It's the first one he's ever been invited to and he is really excited.

I know nobody reads this stuff, so I'm just writing for myself, but when I know the results, I'll still post them just so I have a record somewhere besides in my own head.

Inside the autistic mind

My son, Viktor, is just over four and a half years old. While he has autism and suffers from communication delay and deficits in social interaction and understanding and emotional understanding, his mind is still able to come up with the same argument a normal four year old would draw upon when they don't want to take a nap.

He's always had sleep difficulties and has always been an early riser. Coming off daylight savings time last week has thrown his schedule into a bit of confusion. The actual time showing on a clock means nothing to him. If the sun is up, in his mind, it's time to wake up, even if the clock shows it's only 6AM. With his bed time being around 9 to 9:30 PM, and keeping in mind that putting him in his bed doesn't mean he goes to sleep right away, he isn't getting adequate sleep at night when he wakes up so early.

Because anyone who doesn't get enough sleep they get irritable and cranky late in the afternoon or early evening, to ensure Viktor gets enough sleep, I try to get him to nap during the day. Like any other four year, he fights it. Where a neuro-typical child would use the argument and language saying, "But it's not night time yet." m son Viktor came to the same conclusion but lacking the language skills to say this exactly, just told me, "Stars all gone." When I realized what he was trying to say, it made me laugh at cry at the same time. I laughed because it was too cute that he was using the typical argument to get out of sleeping, that it was still day time so wasn't time to sleep. I cried because it filled me with hope that the ability to understand such things and come to a normal four year old conclusion was within my son's grasp, even if he wasn't able to use the same language to tell me what was on his mind.

I love my son so much I can't express it in words. I am left feeling alone, isolated, frustrated and exhausted caring for him day in and day out with no break in the routine. The only time I don't have to spend time with and watch Viktor, is when he's asleep. Even then I still worry that he'll wake up before me and leave the house and get hurt or kid napped because he has no sense of danger. So even at night, my sleep is troubled with worry and fear for my son.

My only Viktor free time is when he is sleeping. I can't do dishes or laundry while he's sleeping because he has such sensitive hearing the sound if the dish washer would wake him up. There is also a quiet curfew in our apartments, no running the dish washer or washer/dryer after 10PM or before 7AM. This means the only time I am able to do these things is when Viktor is awake. There isn't anyone here to watch him for me while I'm doing these things and these are usually the times when he decides he's going to act out, screaming, banging and making a lot of noise. My partner works from home doing phone support and could lose his job if it's too loud here.

I find myself overwhelmed and in need of a break away from the stress and worry and frustration that is my current life. I could get a couple hours of respite care where someone else would watch Viktor for me, but I keep thinking, what would I do with that time? I could shower, do dishes, try to organize some things in the house and make it a little more bearable. I could take a nap and try to catch up on sleep I've been depriving myself of in an attempt to escape from the stress of my life during the only hours I am able to focus on something else completely, or I could just sit on my couch and stare at the wall. I don't have a car to go anywhere and I don't have funds to do anything. So I inevitably come around to the same conclusion each time I start thinking about respite care: I wouldn't do anything different then what I do now, I just would be able to do it without having to deal with Viktor at the same time. In my mind, it really doesn't sound like much of of break to me so I end up talking myself out of it.

Viktor needs his therapy, he needs to go to school, he needs me to be able to work with him at home also doing the techniques I'm being taught in the therapy sessions we attend, but I know myself well enough to know, I will start out strong and go at it full force and after a few months of unrelenting, constant working with Viktor either in our home or at therapy, I'll burn out. I can't allow that to happen and yet thinking about it, and all the years ahead of me caring for Viktor, doing the therapy, working with him in the home, I become overwhelmed and start to feel burnt out before I've even started anything.

I need to find a balance so I can give Viktor what he needs but not neglect my other responsibilities to the other members of my family and household, or to myself. Not neglecting myself has never been my strong suit. I push myself beyond my limit and end up a simpering puddle on the floor unable to continue. I can't allow that to happen because without me being there, Viktor has nobody else. I also have nobody I can lean on when I need support. I'm not sure how a person with no support structure can care for an autistic person for their lifetime. I can't count on my family, they have a hard enough time dealing with their own lives, not to mention they decided I wasn't worth their time when I disagreed with their assessment on how I'm living my own life.I don't really have any friends either that I can just call up and say come over I need a break, or I need someone to talk to, or I need help of any kind. I have a neighbor who has a 17 year old son with autism, but she goes to school full time during the day and her evenings are filled with studying and her weekends with her own son and his personal challenges so I don't feel I can dump on her because I am not the center of her world and I wouldn't expect to be. We spend time together, she takes me shopping when I need to go so I don't have to take the bus. She took Viktor for a couple of hours last Friday to give me some time off. I took a shower, did dishes and by the time I was able to start relaxing they came back and all the stress and worry came back.

I don't blame her, and I don't expect her to take him for hours at a time. He knows her and is comfortable with her. That means he will go with her, without me, and not suffer from the separation anxiety he normally gets when he's away from me with someone else he doesn't know or trust. It also means he will freely have meltdowns in her presence which is taxing for anyone.

I don't even know where I'm going with this entry other then trying to work out some things I've been struggling with the past few months and have thus far been unable to sort out and come up with a solution that won't harm anyone, including myself. I know I need to take care of my own needs, otherwise I won't be able to care for anyone else in the manner they need or deserve, but taking care of myself has never been my first priority and when I try to put my needs first I start feeling like I'm being selfish and should be focusing on someone else. Obviously I have some issues. It would be great if I had a friend or two that I could just call and ask, "Can you come over?" and they would be able to jump in there car and come and I could spend some time dumping on them, crying, relieving some of the anxiety I am feeling about my own fitness to care for Viktor. At this point, I'm just rambling, unable to come to a conclusion so I am just going to end this vent on this note: be careful what you commit yourself to, make sure you are really and truly up to the task. If you have any doubt, rethink your decision to take that path.

It's been a while...

Blogging never was my strong suit and with so many other things going on, I sometimes forget that I have a blog at all. Not to mention that nobody seems to be interested in anything I have to say anyway so I guess I'm only doing this for me and my needs/wants/desires have always come in second to everyone else and everything else. That being the case, don't expect weekly blogs, or even monthly blogs. They will come as I find the time and if I remember to do them. Sometimes it seems it's more trouble then it's worth. If I had a few followers it might be different, but my only follower is me. That just confirms in my mind how unimportant and insignificant I really am.

Anyway, Viktor started school two weeks ago. They have enrolled him in a social communication class at his pre-school. He's going to Occupational Therapy every other week and starting in October we will be going to weekly Parent Training sessions. He's making progress, even if it is slow. I just wish I could figure out how to get him potty trained I'm so over changing diapers and had hoped I wouldn't be changing them anymore by my age.

My birthday is this week. I doubt anyone will remember or try to do anything to celebrate it. That's kind of how things go in my life. Some people might say happy birthday just because they don't want to be accused of forgetting it completely, but I never get presents or a cake or cards or anything. It's almost as if my birthday doesn't really exist, which would mean I don't really exist, but I feel real. It's all too confusing and depressing to think about so I think it's time to change the subject.

Is the end of the world upon us? So many rumors circulating around about certain events. Comet Elenin, UARS satellite falling, Pres. Obama heading to Denver on September 27th, when the next Sun/Elenin/Earth alignment will happen, rumors that he's going to be running a DEFON1 drill on the day he's in Denver... A lot of people actually are speculating that the Elenin alignment is just a smoke screen to shield the real truth from us. You know the whole bait and switch thing. Get our attention focused on one thing to divert it from the real threat, which looks as though it could be the economic collapse of the US. There are shills and trolls and conspiracy and fear mongers out there and nobody trusts that the government or NASA is giving us correct, complete or accurate information. It's really hard to know what to believe and what is false. At this point, the only thing we can do is be prepared for the worst and hope it doesn't come to that. After all, an ounce of prevention (or preparedness) is better then a pound of cure. It all will be revealed I think the end of this month. After September 27th, they won't be able to hide anything from us anymore, if in fact they are, which I really hope they aren't but I wouldn't put it past them.

Oregon Walk Now For Autism Speaks!

We have a team! We need people to join and help with fund raising and people who wish to donate and we are also looking for a corporate sponsor, to maybe offer a matching donation gift and cover the expense of team t-shirts for everyone to wear on walk day. It's coming up fast and I don't really think too many people read my blog so I'm not sure even why I'm putting this up, other then I've exhausted all my other options.

Anyway, The date for the walk is Saturday, August 27, 2011. If you wish to make a donation, please visit www.walknorforautismspeaks.org/Oregon and put my name (Lara Lohne) on the left where it says "Support a Walker". If you wish to join the team to help with fund raising, the website is the same, enter Igoenitchu on the left where it says, "Join or Support a team". Our team is the only one that should come up. Click on it (my name will be listed next to it) and then click the 'Join our Team' link at the top. Yes, that is a picture of my son, it was taken around Christmas time last year. If you need more information, have questions or are interested in being a company or corporate sponsor of our team, please email me at venna01@gmail.com or send me a message on Facebook. Every little bit helps.