My goal was to post weekly but if you've so much as read the title of my blog, you get that my life is a tad bit chaotic. Also, I just typed a totally awesome post and then somehow deleted it. Bonus. Then, as if I'm not irritated enough already, my foot hurts. My dog pounced on my foot in March and I finally learned today that I had actually broken my foot and it is healing but I have nerve pain. Ugh.
To make up for the lack of the number of posts, this is quite a lengthy one. I feel like some background information needs to be explained for those of you who don't know me or don't know the whole situation. Get a snack and go potty now, this is long.
My life is chaotic. Why is my life chaotic? One might make the case that I cause/welcome chaos and drama. Perhaps somewhat. I like excitement. I thrive on adrenaline (Or is that coffee? I get them confused). I like to try new things and I wear my heart on my sleeve. When I'm sad, I will tell someone that I met in a public bathroom about it. When I'm happy, the entire world--including the mailman--knows it. I have two kids on the autism spectrum and I have ADHD.
Yes, I chose to have my kids and perhaps that one decision proves that my choices invite chaos, as any parent knows. I did not choose to have ADHD (I actually wasn't even diagnosed until I was 32 which was about 2 years ago) and although I would never change my boys for anything, I also did not choose to have two autistic children. We had no inkling that our older son was on the spectrum until he was about 4 and by then our second son was already 2. Again, I wouldn't have decided against having a second child if I had known about some of my older son's issues, but I am just saying that I wasn't aware of them at the time. So I chose the chaos of being a parent, but not necessarily that of a special needs parent. Times two.
I majored in sociology in school, so perhaps if I had chosen a more lucrative discipline my life would not be as chaotic in the financial sense. I'm guilty on that one, I suppose, although no field of study is guaranteed to land you in a six-figure job for your entire life. Oh, and I'm a woman (a woman who wanted kids) and that sure throws a wrench in the whole path to career excellence. Did I choose to be a woman? Nope. Did I choose to be a mom? Sure. Please refer to the previous paragraph.
Because of the needs of my kids and the fact that our city does not provide transportation to schools outside the district, we are responsible for transporting them to/from school. Is this one my fault? Not sure. We chose not to send our kids to Cleveland public schools. The CMSD does not have the best reputation, that is true, but that alone did not make our decision. What kind of sociologist would I be if I didn't really look into what is going on within the district and why it is happening?
The district did a great job of evaluating our kids and, despite a few bureaucratic problems, we really have had no major problems with the CMSD first-hand, except for the fact that there were better options available. Not the cheapest options, but cheap enough that it is doable. Better ratios. More highly skilled therapists. More speech/OT/behavior therapy. So we chose the best option for our kids. Would the CMSD program eliminate the need for me to drive 4, 30-minute trips to school (drop off/back, pick up/back)? Yes. But it also added lots of uncertainty. Who, exactly, would my child's teacher be? Could I meet them ahead of time and visit the building? Nope. What school would they be at? Dunno, wait and see. What time would the bus pick up/drop off? Not sure. Would both of my kids go to the same school? Not necessarily.Would they be at the same school for more than one year? Not necessarily. Would they have an aid on the bus to assist them if--who am I kidding? WHEN--they have a meltdown in transit or to make sure they don't leave things on the bus or at school? No. I wouldn't have the personal interaction with their teachers and the ability to ask quick questions like, "Did you get the permission slip that I sent in?" or the chance for them to alert me about the Ziploc bag with poopy underwear that is (double-bagged) inside the Spider-Man backpack. We chose the more "chaotic" (read: labor-intensive) option for our boys' education, but isn't that what parents are supposed to do? Don't you make the best possible choices for your kids?
If there had been no other autism programs for our kids or no other schools, we would have gone with CMSD and I'm sure they wouldn't be any more likely to be drug dealers by this time in their lives. I'm sure there are a lot of great teachers in the district (actually, I know several of them personally) but I firmly believe that kids, especially special needs kids, need some kind of advocate. I just haven't figured out how to get that six-figure salary out of it.
I was the first in my family to get a college degree. Then a master's degree. In 2010, I was working towards my Ph.D. in sociology because I truly love the subject and I love to teach and conduct research. I specialize in sociology of gender, family and children. In past I have studied criminology, and most recently my interests have encopassed sociology of developing countries, but my underlying interest, even within the broader headings of criminology or globalization, is the role of women, families, and children within those areas.
The closest universities to me that offer both a sociology Ph.D. program AND a family concentration are not that close. I decided to go to Bowling Green State University, even though it was about an hour and a half drive ONE WAY from my house. I chose that program because they have an excellent reputation and they house an entire research center for marriage and families. My husband attended BGSU and we have a sort of soft spot for the town and their pizza, which was not a major factor in my decision to attend there, but was a welcome perk. I knew that I would need to commute a LONG way for a while, but I had hoped that because I already had my MA, and a solid idea of where my dissertation would come from, I could knock out my classes, take my comps, and work from Cleveland on my dissertation. I was doing this so that I could get that great job and contribute to my family and be less chaotic down the road (no pun intended). That whole breaking a few eggs to make an omelette thing.
I'm a stubborn person and a hard worker and my husband is great and my parents and in-laws live close by. This seemed to be just crazy enough that it might work and be a delightful story to tell someday when, after I made tenure of course, my husband and I would entertain our friends and sip expensive wine and reminisce about the old days.
Oh, the chaos that ensued. My grandmother was very ill and died that year. The commute was very expensive and I would often struggle to stay awake just to get there/home. Have you ever seen the Ohio turnpike between Cleveland and Bowling Green?!! Flat. Boring. Barns. The only excitement is the juvenile laugh I'd have upon seeing the "Fangboner Road" sign on a bridge, and even that lost its luster. The turnpike Starbucks employees knew me by name. I got stuck once because of a huge accident and had to bare my biscuits to pee on the side of the road in front of a trucker. I'd leave Cleveland with a foot of snow on the ground, pass through a blizzard that would close the turnpike and delay me, only to arrive late in BG where it felt like a wind tunnel yet there was not a flake in sight.
My older son was diagnosed with ADHD and had undergone testing for autism spectrum disorder but refused to participate in the tests and was diagnosed as "autism-like" but not officially autistic. I didn't (nor do I now) want that label--or any label for that matter--but I knew something was wrong and that life was unnecessarily hard for him and in order to get services, you need that label.
(GROSS FACTOR ALERT!) He was 5 and, although he had been potty trained for a while, refused to poop on the potty. He would hold it and have these horribly foul-smelling "little" accidents all day long. Constantly. Like 10x a day. I don't think I can adequately explain how disruptive this was to him and to our family. We became so frustrated by this that we wanted to yell and him and punish him for being "bad" or not trying, but it seemed as if he couldn't help it and we knew that yelling wouldn't help. We tried rewards, positive sanctions, negative sanctions, letting him use a pull-up to poop in, making him sit on the toilet for long periods of time, short periods of time, laxatives, dried fruit, fiber, psychologists, gastroenterolgists, books, videos, letting him "be dirty" until he felt uncomfortable and more. You name it, we tried it. We still struggle with it. He will go months without an accident and then suddenly have them. It's anxiety and sensory-based. While filling out the numerous questionnaires about our older son, we realized that many of the behaviors that they were asking us about applied to our younger son.
Our younger son was always very quiet until he got mad. Then he was a beast and there was no consoling him. Our older son was (is) so energetic and talkative and active that we were usually busy attending to his needs and were thrilled that his brother was content to play by himself quietly. He did talk, and actually spoke with perfect diction. He often repeated things he'd hear on DVD's (like an entire Charlie Brown episode, including sound effects and musical score) or said odd things when he got frustrated ("Cheesy Goller" was his favorite expletive, for example. It meant that he felt sticky, or cheesy, and/or was annoyed by something), but he was a cute kid and it was often adorable. Since he was so quiet, we loved it when he'd do his little performances. But after we'd had our older son tested, we got on the long waiting list to have our younger son evaluated by the Cleveland Clinic Lerner School for Autism also. I didn't want to be that parent who slaps a label on a kid and medicates them because of a fad. I wanted real statistics to tell me what was going on (Sociology nerd, remember?).
These evaluations are long and require multiple visits. I was still super-commuting to/from grad school (not to mention working 20-hours a week on campus plus attending classes and meetings/speaker events as well as completing my schoolwork during this time, remember). My younger son had some strange vomiting issues also at that time and they had casually mentioned that it *could* be a brain tumor and that he needed an MRI. After my 4-year old had just undergone an MRI to rule out a possible tethered spinal cord (which would explain the poop issues), I now needed to schedule one to check for a tumor in my 2-year-old's head. Thank God--neither son had the problems that they were looking for, but at the time we did not know that. Many visits to many doctors, and procedures, times two kids was...well, chaotic. But again, as a parent, you just do it. You keep going.
Our kids went to a day care near our house when I was doing the super-commute. It didn't have the shiny new building and fancy name of some others around, but it had a clean record with the state and seemed to be a great fit. We addressed our older son's bathroom issues with the staff and they said that they could "handle it" and that they'd seen worse. We packed lots of spare clothes, plastic bags, and baby wipes. Every day when either myself or my husband would pick the kids up, we dreaded seeing a plastic bag tied to the chain-link fence outside the school. That meant that our son had an (or several) accident(s).
We kept on pluggung away at life,hoping that he would stop having accidents and that school would get easier for me and that soon I'd be able to start studying for my comps and working on my dissertation from home, saving money and causing less chaos. This all seemed plausible...right up until one day in March of 2011.
My mom had just had a hysterectomy and was unable to watch the kids on days that they weren't at daycare like she had before. I had a rough first semester at BGSU, but I made it. My grandmother was very ill in Tennessee, but we had all been to see her in August of 2010 and I was planning to go again after school finished in May. She was my only living grandparent, and we are a close family.
I remember picking my older son up from school and he was unusually quiet. He had had accidents, but by that point we pretty much expected that. It was a Thursday, I remember, because I did not need to be on campus on Fridays and my "weekend" started then. I couldn't understand why my son was so quiet and wouldn't talk about his day. He finally told me that he didn't like school and he didn't like his teachers. He often cried (still does) when I dropped him off at school and would cling to my leg or throw himself on the floor, begging me to stay. I tried to emphasize the fun things at school and I asked him what he didn't like about school.
I will never forget the sadness and guilt that shot through my veins when he said that one of his teachers told him that Santa wouldn't come to our house for him come Christmastime because he had pooped in his pants. He also told me that one teacher (not sure if it is the same one) was wearing strong perfume one day and when he had commented on how he didn't like it (imagine that--an autistic kid with a sensitive sense of smell!) the teacher shot back (to a 5 year-old!) that she didn't like smelling his poop and that he should stop pooping in his pants and she'd stop wearing the perfume.
That was it. I knew that I was making a mistake. My kids needed me. I pulled them out of there immediately and my mom (surgery recovery and all) helped me until the semester from hell ended. My grandmother died a few weeks later and several other unfortunate events unfolded within my program that put the final nail in the coffin on my doctoral career at BG at that time but I will save that for another post. I will finish the Ph.D. later.
Just after I left BGSU I was diagnosed with ADHD and given meds that help immensely. I take meds for anxiety as well. Almost all of the money that I was paid for my assistantship at BG (not much, mind you!) went to gas, oil changes, tolls, car repairs, and meals while traveling to BG. I left the program with my tail between my legs in May of 2011 and I was unemployed until September of 2011. My student loans came due. My younger son was diagnosed as being autistic on World Autism Awareness Day (fitting, right?) in April of 2012. My older son was reevaluated and received the autism diagnosis in November of 2012.
I have been a part-time adjunct sociology instructor at three (local!) institutions since then but I am searching for a job that is more reliable in both schedule and salary but it is hard to find a job that pays well and ensures that my kids are taken care of properly.
So I guess many people might say that the chaos of my life is my fault. Maybe some of it is my doing, but I admit no fault. I love my kids and I will do whatever they need...including getting that foot-breaking dog, because he is my younger son's best friend and helps him immensely. I'll take my chaos over someone else's order any day.
