I’ve been trying to slowly convey what it’s like to be a complex parent of special needs kids. I’m not sure that I’ve been able to properly explain some of the issues with me and the complexities that surround it.
So I’m going to list some random facts.
- I have a problem with empathy.
I know that I am more empathetic than my husband but usually less than the average compassionate person. I have my moments where I could really care less. Being a special needs mom has opened up a better understanding of empathy for me. Everyone experiences hardship, just on a different level. I find this a problem when I’m talking to my “Muggle” friends and they are having a quick rant session about husband working late, kid was sick today, couldn’t get chores done, need to get their hair done etc. I am nice to them, of course, but in my head I’m usually thinking something along the lines of my husband sees the kids for 2-3 hours a day max, my kid has been sick twice this month, he has therapy every day, I’m fairly certain all of the clean clothes are in baskets, I had a haircut maybe 9 months ago, I’m outside talking to you all because my kid was feeling better and CAN’T WALK BY HIMSELF.
It’s really, really hard to put yourself in other people’s shoes. Yes their day was a struggle. My day was a struggle. Hell, my entire year has been a struggle but to them that is a major stress and I’m still working on understanding that.https://sites.psu.edu/bmartenas/2016/12/08/empath-or-sympathy/
- I don’t understand religion.
Another thing I’m working on comprehending is blind faith, which is associated with religion. My husband is a Christian. That’s fine with me. I just don’t get it. I have people who tell me “I’m praying for you” or “I put you on our prayer list at church.” Uh huh. That’s great. Is that helping you or me? I don’t understand. I’ve tried and tried. I grew up Southern Baptist. I was forced to go to church by my Granny. I hated it. I have read the Bible. I have read the Idiot’s Guide to the Bible. (not joking). I have read some of the Agnostic Gospels. I have read up on other religions. The biggest issue for me has been blind acceptance of things I can’t see or can’t be proven. It just doesn’t work with my brain. I’ve had people tell me that it was a miracle or God’s work because I didn’t die from a progressive form of cat scratch fever at age 13. No. NO. NO. Maybe it’s a form of literal thinking but a Naval Pediatric Surgeon saved me. I don’t remember his name but I know they called him The Jolly Red Giant. He removed two infected lymph nodes from my right leg because the bacterial overload was starting to affect my organs. I had an open wound surgery, which means there was no stitches. It had to be packed with saline gauze twice a day. I will forever have a scar from that. I remember that I was allowed to go home early because it was Christmas. I also remember that my family hated and got rid of my kitten that got me sick. It wasn’t his fault he carried the Bartonella bacteria. I, also, don’t understand because of the dysfunction of my childhood. My mother seemed to flip- flop back and forth between religions. In high school, I guess during my 1%-on-the-pie-chart/goth days, I was actually a pagan. I loved that religion. It made sense to me because it aligned with science in a way, as in the homeostasis of life. I left it because I felt like I couldn’t follow the basic principles. That aligns with my #1 about lacking empathy. I do understand about this being a source of comfort for many. I have a lot of religious friends and family members, including my husband. I will go to church with you if you ask, but I just don’t understand it.
- I like to know things.
I think there is a connection happening with these facts. I’ll have to ask my counselor if she believes this is linked to anxiety or the blind acceptance issue, but I like to know things. I appreciate having information on a subject before I dive in to. I guess you could say that I like to be smart. I love reading. I like to know why. As much as it ANNOYS me, so does my son. He’s the kid that’s always asking WHY, WHY,WHY.
I used to read the ending of my romance books so I could build myself up to what I knew would happen. I still kinda do that with TV shows I like, so I don’t ask my husband a million questions while we are watching.
- I have chronic pain.
A lot of my diagnosis’ are connected. You wouldn’t think that mental health issues could cause pain, but in an offset way they do. Stress is the main factor. Stress can kill. They have done studies on the impact of chronic stress. It’s not pretty.
To start off, I’ve had TMJ Disorder since I was a teen. I’ve never had it treated because I’ve never thought about it until it started acting up. I’m FTT, therefore I’m very tiny. So I have a really small jaw. I actually need braces because everything doesn’t fit in there right. I can’t afford nor do I want braces anytime soon. So this affects my TMJ. Over the years stress has caused me to subconsciously clench my jaw and grind my teeth. This has started to affect my trigeminal nerve and confuses my brain as to what is causing the problem. So I have a lot of ear pain.
The nerve gets sent mixed signals so the issues that my TMJ cause get sent along and interpreted as ear pain. It affects right behind my ear and it’s horrible. I’ve taken 1600 mg of Motrin in a day because of it. I’ve got told NO my by doctor and told not to go over 1,000 mg, but nothing else really helps. I need to see an oral surgeon but there are none here on Tricare. I really don’t want to see one through our dental insurance, because I can only imagine the co-pay.
I, also, have some lingering nerve pain from my cat scratch surgery and C-sections. In addition, I have been experiencing pelvic pain which they are trying to diagnose.
Some pain I experience just because of stress or overload. Sometimes I get a headache because I’ve dealt with too much that day. I have intestinal spasms, which I’ve mentioned before. I get body aches. I get joint pain in my hands, knees, and hips. I get muscles cramps in my legs.
A lot of these things I rarely notice anymore. So much to the point that I couldn’t really describe my pelvic pain to my GYN. It wasn’t really apparent how much pain and pressure was there until she did an exam and pressed her fingers into the side of my pelvis and I about jumped off the table.
- I have a love/hate relationship with my medications.
I have been off and on medications for 11 years. I understand their importance but there is still a lot of stigma about them. When I first started out taking meds, I ended up on the lower end of the bipolar spectrum and got away with taking some mild anti-depressants and maybe an anti-anxiety or anti-psychotic for sleep. I was considered cyclothymic at that time. As my disorder progressed, I was no longer able to take those medications. They ended up triggering some hypomania. I remember that Zoloft stopped working after I had my 7 -year -old because I tried to take it for PDD. I can no longer take any AED’s, which is the anti-epileptic class of medications, that are used as mood stabilizers. They lower my platelets and hematology told me to avoid them. So I’m not left with a lot of options. I’ve been on Lithium for a while now. I am currently without an active prescription because it has been so difficult to take my youngest to appointments with me. Since he just started school I’ve been in process of booking all my appointments. I called my psychiatrist’s office and the soonest appointment they had available isn’t until the 22nd. I almost cried when they told me that. Then I started the process of searching for a new psychiatrist because I don’t feel like all of my needs are being met. My anxiety isn’t well-managed with JUST the lithium. I think my doctor is convinced that my anxiety is apart of my bipolar, which with bipolar 2 it usually is, BUT I’ve had evaluations that now confirm that I’ve had generalized anxiety since childhood. I don’t want to be a zombie on ANY medication but I do not relax anymore. If my brain isn’t on the go, then I don’t know what to do. My room is full of books. Wall to Wall almost. I can’t read any of them. I can’t concentrate. I hate having to rely on medications for the rest of my life, but I also can’t be a hot mess all the time. Bipolar disorder comes with a lot of complications. The meds are one of them.
- My kid’s needs are hard on me, but MY disorders are hard on them too.
I’ve heard many people say things along the lines of “you’re an adult and you can control your emotions.” Well, it’s not that easy when you are in an episode. It doesn’t matter that I have kids around. It took about 5 years of therapy for me to be able to recognize when I was beginning to cycle to a low or high point. Now at 10 years of therapy I know what my symptoms are, what will likely happen during my episodes, how to trigger hypo-mania (which you really shouldn’t do), what crashes feel like, and how to tune out of some of the obsessive thoughts. But my emotions are still very rapid. I get so very frustrated having to tell my child to do something 10 times in a row when I know he is listening. When I’m my irritated and impatient self I can’t take it. I sometimes snap and start yelling and before I know it both kids are crying and someone has been grounded. I’ve tried to tell my oldest something along the lines of “Mommy has some of the same issues you do, and when you are very loud and won’t stop jumping around it overloads mommy. Then I get very irritated and can’t concentrate so I end up yelling.” He isn’t quite able to even grasp the concept of his ADHD so I know it will be a little while before he understands what I’m trying to tell him. I just want both of my boys to know that I try very hard to remain stable. I grew up in an unpredictable, dysfunctional household and I want it to better for them. I know I have them started off better than I did. They have current diagnosis’ so they can get treatment. They receive treatment and therapies. They receive help in school. They are slowly being taught appropriate life skills relative to their development. Most importantly, I have my diagnosis’, treatment and therapy. The people who I grew up with did not and still do not.
I hope my boys grow up with a profound understanding of these illnesses and one day, even if it’s not until they are 30, understand how difficult it is to manage your own disorders AND the disorders of TWO tiny humans.
- The GOOD DAYS are good, but the BAD DAYS are bad.
I know that I have it a little bit more together than some with bipolar. I’ve seen the devestating effects. I’ve been in a week long hypo episode before I had my son. You are not really YOU. You do things that you wouldn’t normally do. I don’t gamble, get drunk, do drugs, party, spend an entire paycheck in a day, or have multiple sexual partners during an episode so I consider that a good thing. I have 3 tattoos. I want more. The thing is all of my tattoos were from episodes during one years time. My first one was done horribly, but it’s a reminder of things that can happen. I just rolled out of bed one day and went to a tattoo shop.
Growing up around this sort of thing has made me realize that effect, as I said above, on my kids. I know that they will think life is unpredicatable, that they will question if mommy really loves them, that they will find emotions hard to talk about and that they will always wonder if a good day will turn into a bad day. I don’t want my boys to experience any of those things, but it’s a harsh reality. That is why the medications and therapy is so important; So we have more GOOD days, that don’t turn into bad ones.
Some of the things I listed above may be hard for you to understand and that’s okay. Just don’t be a jerk about it. I do the best for my kids and I often put myself last. I don’t like to use my disorders as excuses but I do live with them and they do affect my day-to-day life. My clean laundry baskets tell that tale very well. xx