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.