I am still here, it took me longer to recover from things than I thought it would. I should be back writing and replying to comments soon. I am at the moment trying to find my book for class which I lost in the chaos that has been my life the last few days.
Sometimes I feel so fundamentally broken. I’m amazingly capable, functional and intelligent until I’m not. Today can be over now, thank you.
Sorry for the lack of posts and replies to comments. Class started again last Monday after a 2 week break, usually there is only a weekend break. I’m having a hard time getting back into it. Also I am still recovering from food poisoning and there is a major source of anxiety coming up next week. I will try to post and reply before next week but I have to prepare mentally for this, I have to keep it together at all costs… so please forgive me if I don’t.
2 days ago I got a horrible case of food poisoning, I was very sick and it left me drained. It was so bad “O” had to stay home from work yesterday. This morning he no choice, he had to go back to work and I had to take “K” to a neurology appointment. The morning started off rough, “K”‘s routine was messed up yesterday (she had a fieldtrip) and then this morning for the neurology appointment. She was very upset and none of the usual things worked to calm her down, she just needed to cry/scream it out. Unfortunately that means she screamed the entire hour and 20 minutes it took to get there. I am thankful that a friend of “O”s drove us there and was very understanding of both “K”s screams and mind jumbled and distracted speech.
Once we arrived “K” calmed down, her mom went this time and held her which helped, though every now and then she’d scream out. I don’t blame her, the office waiting room was crowded and hot, it was almost suffocating. I could hardly keep it together so I imagine it was a terrible assault on her already over stimulated system.
The new neurologist was very nice and straight to the point, just how I like them. He listened to what I had to say and didn’t dismiss a certain issue that pediatrician the dismissed. It is comforting not to hear “well, that’s normal with Autism”. NO! There are things that can accompany Autism but that doesn’t mean it’s NORMAL! That is something that has to change among providers, that mind set is one of the reasons it took over a year to get “K” a diagnosis and treatment for her seizures. She suffered for so long and regressed because of it, when I think of it I get very angry.
But I digressed…. so back to the original line of story. The waiting room was terrible and we had to wait almost 45 minutes to be seen, that stretched my already thin…what to call it? I see a lot Aspies refer to it as spoons, that doesn’t feel right for me (maybe because I don’t like spoons) but I haven’t figured out a name for it myself. Anyway, “K” got upset again as we were leaving the neurologist (I really really really need to remember to buy ear plugs on this next paycheck).
On the way back home, I asked the kindly friend to stop off at the store so I could get a money order for rent. I walked into the store an immediately knew this was going to an issue. I just felt wrong, I’m still somewhat out of sorts so I can’t describe it very well but it as like trying to see underwater.
I walked to the cashier and took out the cash and debit card. I looked down at the money, “O” had told me it was $80, I could see it wasn’t $80. It was three $20’s and two $5’s. It should have been simple, I’ve cashiered before, for several years in fact, this should have been as easy as breathing… but it wasn’t. I just stared down at the money and almost cried. I ended up just handing the money to the cashier, she it turned out was very sweet. She looked at me for a moment and then said “Ok, so we’re doing $70 in cash and the rest on debit?” She then counted it for me twice, slowly. I thanked her, paid and walked out. I know it’s not the worst thing to happen but it shook me up.
Sometimes I really hate having such vivid memories, it’s like being trapped in a theater playing all the worst moments of your life and not being able to shut your eyes.
I’m stuck in a replay of a bad time in my life. It was a few months after giving birth to my son, my hormones were all over the place, “K” still hadn’t started school and was going through a really rough patch in behavior mainly due to undiagnosed and untreated seizures, and I was completely screwed up sensory wise. All of this made for a very unstable person, I was miserable. “O” and I now have a great relationship but around that time it was almost all but over. He retreated from the chaos by seeking out something familiar and comforting, an ex.
Their conversations never really crossed the line of inappropriate but I felt myself losing him, he spent more and more time talking to her and it was what I felt, a betrayal. I needed him and instead he was giving her comfort for the turmoil in her life. I had never felt so alone in my entire life. That was a year ago and he has done everything he can to make amends but something triggers my memories and they start playing. I can see and feel everything so clearly, like it’s happening now. This happens with almost every memory, it’s a full color and motion vision. I hate it sometimes.
Today I’m stuck there in that time. Now, I understand why they say never to betray an Aspie.
I’m having a hard time today. Holidays are always overwhelming even if they are nice. Yesterday was actually very pleasant but I’m paying for it today. Everything is bothering me. “K” is at max volume today because she’s excited which means I’ve spent most of my morning wishing I’d remembered to buy ear plugs the last time I went to the store and grinding my teeth. She is also in seeking mode so she wants to be hugged every 5 minutes. I feel guilty because she isn’t at a point yet where she understands sometimes people need a break from hugs. She gets very upset and I worry that she thinks I don’t love her.
She has come such a long way. Today I asked her if she saw the baby’s bottle, without skipping a beat she said “The bottle, where is it?” and started to search for it with me. Then after I put the baby down for a nap she looked at me and said “(insert baby’s name)’s crying, wake up baby”. The baby was not crying, this was her way of saying she wanted me to go get him, she missed him!
I remember someone telling me “K” couldn’t be Autistic because she liked people and hugs, and was very affectionate. There seems to be so little known about the sensory seeking side of Autism. I believe it adds to the reasons why some children are diagnosed later than others.
“K” is primarily a seeker, she loves touch, hugs, running into walls, jumping, rubbing her hands, feet, mouth on random objects, listening to several noises at once and making sounds or talking all day long to help meet her auditory needs. It makes her happy so as long as she isn’t hurting herself so I try to find ways to distract myself from the assault on my sensitive senses…. like writing this post as she watches Disney Jr, rides around on the baby’s ride on toy, pressing the music buttons and switching between singing and screaming. Usually I hate the our home doesn’t have an open concept layout but today I am thankful as the wall between us helps minimize the sound a bit.
My stomach was/is also overwhelmed by yesterday’s meal. Some of this might be because I’ve had an even harder time sleeping, more than usual. Last night I gave in and took a Benadryl to make me sleepy, I couldn’t take not sleeping anymore.
The main reason “O” and I have lived our lives so long without a diagnosis is because we’ve both been able to “get by” but that’s getting harder. From what I’ve read a lot of us don’t realize where the real difficulties arise until we pursue a dream or have kids. For “O” and I, having to consistently provide not only for ourselves but 2 kids is beginning to make just how not “normal” we really are.
For me it’s the constant assault on my senses and the difficulty in understanding what my college assignments are asking of me. For “O” it’s finding the balance between needing to be precise/honest and efficient on the job.
I failed an embarrassing amount of classes when I attended a traditional college, not because I didn’t understand the material (except for math– I can’t do math) but because I did what my friend(s) did, which at the time was skip class and go to the beach. In retrospect I can see how that didn’t make any sense, I wasn’t particularly fond of that group of friends, I actually enjoyed class and the beach was difficult for me in a variety of ways… I usually ended up with a migraine afterwards. It was never a “big deal” though, I couldn’t see how it would affect my future and as independent as I thought I was (I wasn’t) I always had my mom to fall back on.
Now I’m back in school but due to “K’s” needs, I have to attend school online. I like that I can go at my own pace and it’s more interesting that just taking a midterm and final (there is actual work involved) I am having trouble. One of the biggest issues I’m having is that, at least for this last class I took, the terms are not consistent. For instance the chapter will be about the different perspectives in psychology about motivation but the assignment will ask that you refer to the different models of motivation. It seems simple enough but for whatever reason, even if I’ve read the chapter twice and no that it doesn’t use the term models I will still look for it. I waste time and get confused and overwhelmed, then depressed because I’ve always considered myself an intelligent person and I get upset that I have difficulty with something so simple. This could be easily solved by sending an email to the professor but that involves it’s own issues.
For “O”, he is dealing with the reality of our culture; faster is better. He is technician for a popular telecom company, he is still considered a “new” employee because training was 3 months long, he’s only been out on the field for 2 months. The other issue is that we both ( I guess because of being on spectrum) don’t really understand the accepted practice of saying one thing in training for appearances but really meaning something else. The technicians are taught that the must be thorough and customer service is number one but when they get to their areas their supervisors demand efficiency above all else. “O” takes longer to perform each call because he is practicing what he learned in training and because he’s doing his job but the numbers don’t reflect that effort and he’s being reprimanded for it. He called me today and he’s very upset about it and wants to quit. He can’t. I hate to hear him miserable but we have home to care for and children. My mother already helps more than anyone should have to help their adult child with children of her own.
I sometimes regret having my son, not because I don’t love him or don’t him, I do. It is because I feel that I have limited him in some ways and made life harder for my supports (mainly my mother). I am an extremely capable person but at the same time I’m not. I worry about being able to effectively provide for him and my stepdaughter. I worry about “O” and being able to keep jobs, maintain our lives and give the kids the best life possible.
Most of all I worry about “K”. I know it’s impossible to tell the future of someone on spectrum when they are young but I feel in my heart that she will always need round the clock support. What if we can’t provide that? What if we try to be completely independent and crash and burn?
I’ve always wanted more children but I realize now that I probably shouldn’t have anymore. We likely survive when my mother is longer their to help us but there is a difference between surviving and thriving. My children right now are thriving but if I were to add another, I don’t know that would remain true.
Can’t I just win the lotto? Then I could hire someone to help and money wouldn’t be an issue… oh to dream.
People (sadly even professionals) like to say that kids on Spectrum, particularly kids with “K”‘s level of function, don’t ever play with toys. Or that if they do it’s not “appropriate” and with no imagination. “K” has an amazing imagination, she may only have a few words but she’s been a witch, a fairy, cooked a grand feast and put her babies to sleep 🙂
Today is the last day of my Psychology as a Natural science class. I have to write a 5 page paper about the connection between emotion and motivation as it pertains to the achievements of someone I chose. I can’t slow down long enough to read the source material on emotion and motivation and the clock is ticking. tic. toc. tic. toc.
My body doesn’t want to slow down, it wants to run.
My brain wants to think about the novels I started 4 years ago and never picked up again…great timing brain.
My eyes are making the words dance and I’m getting dizzy.
I’m trying. tic. toc. tic. toc.
I’ve made threw three 6 week classes and now when the paper is worth half my grade my body is fighting me with everything it has. tic. toc. tic. toc.