Sunday, June 24, 2018

Life School- you do you, we’ll do us

It’s a personal decision. One I’ve thought long and hard about. I’ve discussed it with her father; in the end it’s ME who is responsible for her education. It’s me who will be her teacher and guide.
We aren’t quitters. We’re not “quitting” school. No, we’re moving her schooling to home- and to wherever we may find ourselves on any given day. I have been researching and teaching her since she was born. It only seems natural.
I have fought and fought to get her the best and most appropriate education in a public school setting. There are a LOT of things that need to change for kids who have special needs who are in a General Education classroom setting. A LOT!

My thoughts were:
Do I keep fighting and fighting, having meeting after meeting?
If so, then I continue to watch my daughter unravel. I saw her in tears nearly every school morning, pleading with me to let her stay home. “I want to be home, Mom. I want to be with you.” I saw her biting her fingernails to the quick, raw and bloody daily.
What I no longer saw, or heard, was my girl talking. Rarely she did.

As the school year came to an end, I began to discuss with her what homeschooling would mean for us. I swear I quite literally saw the weight lift from her shoulders. I heard her let out her breath. I saw her smile. She began to have conversations with me! That, to me, all of that, is worth EVERYTHING.

Her anxiety is diminished. So has mine.
I can FOCUS now on her curriculum, on putting together materials needed. We have been discussing the essay she will start on in August. She is actually excited about it. I can also focus on her brother more- give him the attention he needs as well.

It won’t always be easy and great. What is really? I am aware of this.

Emma has good days. Emma has really bad days. Now, on those bad days I don’t have to force her to go to a place that stresses her out. My daughter’s mental health is important. Mine is too.

We’ve shed too many tears and wished for something different too often over the last two years. I’m done trying to explain to my girl why she HAS to go to public school when I don’t even believe it myself.

I have nothing against public education. My son will still attend because he WANTS it. He likes school for the most part. He doesn’t have trouble with it.

How will I do it all?
Um, do you know what all I’ve been doing for almost 14 years? A lot. I’m exhausted. All the time. But I find a way. We just DO.

I am overjoyed and RELIEVED that I get to have her with me. She can finally learn at her own pace! That means that she is going to fly through some subjects, and others we will take as long as we need until she understands. There is no deadline for her now.

Technically she still has an IEP with Indiana State public schools. This will ensure that if I need any resources, or if Emma needs transition to college help, we will have it.

I don’t know all there is to know. I continue to learn and discover every day.

I am the mom who ENJOYS her kids. I love Summer vacation and Winter break. I love having them here.
Sure, they drive me batshit crazy sometimes. Sometimes they talk incessantly about their interests until my brain cannot take it anymore. (I am thankful for adult friendships!) Sometimes Emma whines and argues, and she and I are snippy with one another. Mostly though, we are all 3 incredibly laid back people. Our house is generally quiet. Unless Emma is blasting Sounds That Planets Make*, Trap Music on a Continuous Loop for Seventeen Hours*, NFL Theme Songs from Every Game Since 1983*. We like it this way.

I know I don’t have to explain myself to anyone, but you know me. I like to write. I HAVE to write. If I don’t write, the words play over and over in my head and try to eat me alive. Truth.

*not actual YouTube video or Netflix show titles 😂

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.

Saturday, March 4, 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.

Tuesday, February 7, 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.