Thursday, February 15, 2018

why she’s so tired

Another look into our lives:

I swear if I get another phone call asking me WHY is Emma so tired? And implying her schedule is off, and it’s my fault...
How many times must I remind those in education that my daughter is a hormonal teenager who deals with her autism, and sensory processing issues, anxiety, abnormal focal discharges (and sometimes actual seizures)coming from her occipital lobe (minimized by medication,) oh! and the medication causes sleepiness and makes her hungry All The Time... ****but we DEFINITELY pick her eating a lot😁😁😁 over the debilitating side effects of medications they had her on just a year ago, that caused her to lose 25 pounds (at 12 years old then,) her hair to fall out in clumps, her verbal skills were almost nonexistent, she hallucinated, she began to wander and we had to install Home Security, she regressed to 2 year old behavior, until she could not get out of bed (her brain became inflamed and swelled,) and her gait actually changed (this is why she walks “oddly “ now, and she does physical therapy in addition to occupational and speech language.) Her changed gait, and how she distributes her weight now on the insides of her feet, have caused her joint pain. ... And before all the medications, she was having literally hundreds of seizures per day, and she has much memory loss of that time.

So, PSA, our girl is a WARRIOR. We don’t make excuses for her. And we celebrate every time she progresses.
My biggest concern is not that she be an honor student- not at this time.
My fight is for her to have school days (and days in general) that don’t end in biting her nails bloody and rocking violently.

My daughter is brilliant. Her mind amazes me. But I know she will not reach her potential if she is stressed every day.

She’s going to go places. For sure. But we need to remind ourselves of how to best support her and what kind of teaching she responds well to. Not just at school, but at home too. I am ALWAYS reading up on real- life autism and epilepsy stories and doing my own research. Because I NEVER know it all. I’m always learning.

** She hasn’t felt well this week. Started out with one thing, and now it’s something else.
Sometime she can tell me a symptom or two, but I have to do detective work and figure it out!
She told me Monday night finally after being “off” all day what was actually wrong, and she was in tears. She said she “didn’t know what to do,” “ didn’t know what words to use,” and she had not been able to tell me. We have a good pediatrician who is able to help over the phone and in office as well. (Even though I did get mad at the receptionist this week 😂😂)

^^ She is fine, by the way, or will be soon. 😁💕

** We’ve got good people around us, who support us and love us, who encourage and help her learn new skills (all kinds of skills she needs!) I am so grateful.

Posts like these are my way of giving others a glimpse into our lives, and to provide awareness.
We are never asking for sympathy.
A little empathy and understanding goes a long way though. ❤️

#epilepsy #focaldischarges #sensoryprocessing #ongoingtherapy #occupationaltherapy #physicaltherapy #speechlanguagepathology #warrior #mygirl #educateoureducators

Saturday, December 30, 2017

a day of reflection

As this year comes to an end I think of how my mind has quieted.
I think of how restless I was one year ago. How my anxiety was at an all time high. I went through the longest running manic episode that I’ve ever been on. It spanned several months of the year before into this current year. I had to recognize that before I could work on it. I think of the harm I did to my beautiful inner-self. I think of how I did all that so well, unable to stop myself. I remember how unwell I was, how I had caused this by avoiding my own issues for far too long. How grief and sadness and shock can tear a person down, and how one has to eventually come to terms.
I think of how I began to come out of and quite actually come into my own. How lovely it was to recognize myself for exactly who I am. To Love myself wholly and see my self-worth.
Yes, I think of how my mind has quieted. How I’ve grown. Yes, forty year olds grow. We’re all growing and learning every single day. I’ve noticed how I take information in now- I mull things over. I tend to not spout out a response so quickly these days. I find I am more careful of others’ feelings. I Let Go of all things in The Past. Those things don’t belong Here- in The Now.
I met someone this year. I can’t believe how quickly time flies! Yet, we both feel we’ve known each other for ages. I am grateful for someone who is so very much my best friend, a true partner in shenanigans.
I turned forty one this year. I admit, I was sad to leave Club Forty, but my Love made this birthday the best I have ever had as an adult. The same goes for Christmas. He just knows. He just does.
I think of Emma’s struggles this year and how they become mine as well. I gather strength daily so we may tackle these issues.
I think of how this is most likely the last year Noah eagerly anticipates Santa’s arrival. I can only hope that he holds onto the Magic of Christmas as I have.
I have no regrets really- there is no point in that.
This year is different. I don’t look back on all the moments with sadness. Instead I fondly remember all the sweetest, funniest, most amazing days we’ve had.
I look forward to all the many new moments we will have, new experiences, memories that we’ll keep forever with us.

Monday, November 27, 2017

station wagon (stop breathing on me)

we lay in the back of that station wagon
faux wood grain panels
dekalb advertised on the side doors
you and I lived a farm life but never embraced it

we saw our lives, past and future, rushing by,
in the sky above
we knew where we were by the power lines and treetops, counted the turns

in our own world, we did our best to block out all things grownup
back when you were my best friend
back when you’d irritate me and i’d yell,
perfecting my stage cry

I told stories, weaving tall tales, so i could share with you the places i went inside my head to escape all that we knew

you made me laugh until there was no sound and my body shook (rumbling, you said)
your jokes were the best

you told me you could fly in your dreams,
and i’d never been more jealous of anyone

you wound your stomper wheels around my hair, tangles and knots and tears

a rare mcD’s hamburger and those beautiful bestest salty fries

we screamed, we cried
we laughed
we spoke our secret language

brother sister sworn enemies

brother sister clinging to each other

-april charisse

Wednesday, August 2, 2017

It's me who makes the monsters

Always a work in progress, I am.

As Emma goes into her teen years (and after a year and a half of regression due to seizure medication- then getting back to good), I am constantly relearning her autism. With hormones thrown into the mix, her days are often a mess of emotions and meltdowns.

Its easy to become frustrated with her. I beat myself up. I tell myself I can do better. I will be better. For her.

She's come a long way. So have I. I am not the same person I was some thirteen years ago, or even five. We are constantly evolving and growing. Some days we are stagnate. Other days she goes back a few steps, and I stumble and am hard on myself and depression sets in because I feel like I've let her down.

Every day I am learning. I strive to be better for both of my children.
I do know that our home is happy. I am happy. The happiest I've been in years. My children are happy and are both healthy.
I am grateful.

Friday, March 3, 2017

i don't do church

I don't do church. A Christian God doesn't suit me. My spirituality lies in my heart, stems from all that is around me. I find Spirit in music, birds chirping and chatting, the wind tumbling my hair, in sun and warmth, the sound of waves crashing and sea gulls gossiping.
My soul is beyond tired. I am weary, a little lost.
I told Amanda that- "I am tired. My soul is so tired. I miss you." She said she knows. So I'm going home to my Amanda tomorrow, for the weekend. My Amanda, my friend of 25 years now. We know each other better than anyone else on this Earth. I feel quite sure we've walked together in other lifetimes, for we'd recognize the other's soul anywhere.
I repeat, I don't do church. On Sunday morning though, I'll attend her Quaker meeting so I will be surrounded by beautiful souls. Such thoughtful people.
This weekend I desire peace.

I continue to work on growing, self-awareness, and self-realization.

Monday, February 6, 2017

Oh, sweet girl, where ya going now?

When your 12 year old autistic, epileptic child has kept worried all day and night because even though she is quite BRILLIANT academically, she comprehends real life situations about the same as a toddler would. She thinks rocket ships really will take her somewhere and packs a bag. She believes she'll die if she doesn't reblog a post. She will try to walk on her own for miles? to get to school. She'll get in the car and sit in the driver's seat and tell me she's driving to see a kid from her class. But the car sits there, quiet. She has no idea how to start it. *thank God *
I am reminded of when I was two and tried to pedal down the road to the store for my mom. I didn't comprehend the dangers of doing such a thing because that part of my brain wasn't yet developed. Neither is Emma's. She's still trying to catch up. It's frustrating for her.
And so frightening for me at times.

Tuesday, January 24, 2017

I have yet to get it right

I've been pretty independent since I was a toddler. I remember mom telling me the story of how I got on my Red Flyer tricycle while she was napping. She woke to a quiet house. No April. She ran outside and heard the squeak of the trike as I peddled down the busy farm road. Where was I off to? Well, to get mom Pepsi and doughnuts from the little Belle Union store.
I was generally a quiet child. I was called shy. I wasn't shy. I had severe anxiety. It was crippling at times. Around close family and friends though, I was at ease. My true self shone. Shined? I'm too tired to look that up. Since I was small I've been called sassy, bossy,snarky. Yes, that's me. I still have anxiety, but it has lessened as I get older. Oh, I still have some panic episodes where I feel paralyzed. It's still hard to make a phone call sometimes. I am mostly alright though.
Now back to the independence thing. I've always been headstrong. I do what I want, when I want. I am polite, responsible, kind, etc. But I have a mouth. I'm not sure where I got it. I'm one of a kind in my family. I've embarrassed my dad on more than one occasion. But he also knows I'm his go-to person for dealing with business phone calls for him- I can put on That Telephone Voice and get the job done. Making HIS phone calls aren't a problem- it's making my own that cause so much anxiety.
I take care of my children, my house, either do maintenance work myself or hire someone, take care of the car, pay bills- I do it all. By myself. Without complaint.
I have a fault though. It contradicts my independence. My heart is so big. When it falls in love, it falls in love big time. It can't be stopped. I have actually said the words Oh Shit *to myself* upon falling. My head knows better. It knows I shouldn't. But my heart says with a sniff Go Bugger Off Stupid Head.
It isn't that I NEED someone in my life. I am not a desperate woman. I have never been out Looking for Love. And really, I haven't fallen in love that many times.
I have yet to get it right.
I won't be with someone who I am not in love with. Clearly.
And even when I have been with someone, really, I have always been so alone.
Underneath all the independence. All the badassery I radiate. I am just me. And just me wants to be in love with someone who is so much in love with me. Someone who is real. Just as real as I am. And honest. Who's tough like I am, and gentle too. Who sees me for who I am and loves all of me. Who loves my children and treats them like they are his own because they are a part of me, not because they need a father. They already have a father.
I have yet to fall in love with the person who will match my radiance, joy, excitement, madness.
#ihaveyettogetitright #stupidheart #love #independent