her world is magical

To be Emma is to live most of the time in a MAGICAL world we cannot see. Can you imagine? Living in a place where you can so easily picture yourself on a distant planet? Where music 🎶 makes you so happy you can FEEL it, rocking and smiling and making joyful noises? Where all around you, you have beckoned faeries and pixies, Sasquatch, aliens and droids, pop stars and glitter, long-gone heavy metal 🤘 rockers bringing down the place with kick drum vibrato you can feel in your bones? A place where Chinese love songs make you light up, your heart flutters?
In this beautiful world you see, and it is NOT ugly, people are to be spoken to. Everyone has a story. You just have to tell them you have noticed them. “You have blue hair.” “I like hot sauce.” “How is salsa made?” “How do prescriptions get in glasses?” “You speak Spanish.” Nearly everyone you inquire opens up to you.
That’s what Emma’s world is like. She doesn’t live in a small world. She isn’t simple-minded. She doesn’t feel sorry for herself.
She lives in a magnificent universe (in a plethora of multiverses.) Questions are to be pondered, spoken aloud, then pondered some more. Everything is full of WONDER.
🦄🦄🦄🦄🦄

I don’t live in her magical realm. Sometimes her questions and topics of conversation are tiring. I answer some. We ask Siri others. The day ends. A new one begins. She asks the questions again.
When I get weary, I have to step back and breathe, take time for myself. Then I emerge from my cocoon of literal blankets, and I can see my daughter with new eyes. I gain fresh perspective all the time. I touch her beautiful face and stroke her soft curls and whisper, “I love you.” She laughs if I tickle her cheek. She does not hug back or say she loves me. Sometimes in Han Solo fashion, she’ll mutter an, “I know.” If I sign “I love you “ with my hand she will return the gesture. ❤️

Just checking

Insight:
I have a teenager. Not a “typical” one. She is quirky, is on the autism spectrum, and has a movement disorder and epilepsy. She’s also thoughtful, chatty, beautiful, and so intelligent. Everything she does she does much slower than most of is. She requires PATIENCE.
At the risk of over sharing, I just want to give you an idea about something here. ... I want to give her independence. I teach and encourage her daily to do things on her own. ...
Public restrooms. It depends on where we are. What kind of setting. A huge venue or a restaurant that’s not too busy. Do I let her go alone? Today it was just the two of us in a restaurant that had quieted just after the lunch rush. I showed her where the restroom was and showed her how to get back to our table. You have to show her the “signs” to get back, like breadcrumbs. This door here by the lights. Look straight ahead then look up. You’ll see the fans on the ceiling. That’s where our table is.
Well, she was taking forever. And ever. I had a good view of the hall to the restrooms. Could see who was coming and going. The longer she took and the more women (and men) I saw head that way made me nervous. I know she’ll often stand in someone’s way and stare. She’ll rock forward, bent at the waist. Rocking and making throaty noises. And she won’t move. Or she’ll comment on observations she’s made about someone. To them. Loudly.
I checked on her once.
Then again.
She was fine. Just taking longer because her belly hurt some.
She made her way back shortly after I checked on her the second time.
The server was kind. He sensed my worry. He brought Emma some fresh cookies when we were about to go. Emma had enjoyed talking with him about his blue hair. She wanted to tip him personally, which I thought was touching and thoughtful. She wanted to say Thank You. I obliged of course. I explained how much we should tip and sometimes a kind server should get a little extra.

Granted, I will not let her go in a restroom alone in a stadium or even in some Walmarts! And sometimes she NEEDS me to go in the stall WITH her. I have never received a dirty look or an odd look for going in with her. I think most women in public restrooms have been pretty understanding of our situation. If I DID ever get a look or hear a comment, you know ME! Whatever comes out of my mouth will be quick and sharp and cut right through the person! 😂
But days like today, I let go of her hand, and I give her space and freedom and the tools to be independent. ... and I watch that bathroom door like a hawk and keep checking on her! 😂❤️💪

Morning coffee

Morning coffee and candlelight. Not quite ready for the sun shining yet. I need this quiet. I’ve been flailing, faultering <——— not a word apparently. September comes and a terrible grayness with it. Every year, like clockwork. My thoughts are muddled. I can not do the things that need to be done. Yet, I stay busy. Business keeps the darkness at bay. I stay so busy I collapse onto the bed at the end of each day. And I realize I’ve only been talking to the voice inside my head all day, and it’s lonely in there. I don’t know how to ask for help with things I need done, so my list grows longer. Panic sets in. Busy me still can’t seem to check much off the list. I am not sad. This isn’t sadness. This is accumulation of all the emotions I have felt every single Autumn since I was a child. The leaves would fall, and I did not delight in them. I cried when the skies turned gray. I was so young, but I remember thinking “I don’t belong here when it’s not sunny and warm.” This is remembering when mom got the call it was cancer. This is remembering her pain. This is remembering my last weeks of pregnancy with Noah, driving myself to OB/GYN appointments in Washington State. I can still SEE in my mind how the sky looked, and the trees. I can still FEEL the air. I remember having a little girl at home, and no one could tell me what was “wrong.” Please stop telling me it’s nothing- I’m tired of being on all these waitlists for specialists. I feel so alone. And then he came early, and I was terrified. This is the little girl inside of me who still hears the words “You are a lazy child. “ “Why don’t you go outside and play?” “Why are you different from the other kids?” “She doesn’t have much common sense, does she? Book-smart though.” I don’t dwell on the past. But that sticks with me. I recognized just a few short years my need to do EVERYTHING and do it right stems from that. Because I didn’t do ENOUGH then, I must do it ALL now. Self-care isn’t just getting my hair blown out or a gel manicure; it’s taking care of the little girl inside of me who has grown into the woman I am today. I am still learning how to do that. Some days I just want to REST. I want to do NOTHING. But I am fearful someone will find me like that, and I will be deemed lazy again. I also fear that if I enjoy resting, I won’t want to get up, and I don’t want to fall into a deep depression. I like who I am. I didn’t fall in love with me though until about two years ago. Yes, I hadn’t really loved myself since I was five. I love me. I pride myself on “getting shit done.” “I can handle it. Let me take care of it.” Then I feel a little crack. The plates shift a smidge, and my carefully arranged self breaks a little. This is a vulnerable post. Letting people see. This isn’t about “oh the sun will come out tomorrow.” This is about “I am not sad. I see the sun now. I love each and every day. I have not much to complain about really. But, I am human, and I am flawed, and sometimes I am fragile. I am strong. But I have been weak. I am kind. But I have been unbearable with a sharp tongue before. I know how to do things and get things done, yes. But I have been that child who lived in her own world and obsessed over my dollhouse and couldn’t cut my food or tie my shoes or climb. 🤔 Hmmmm. Much like a child on the spectrum. I am a mother, a lover, a friend. I am a creative person. I like me. This. Is. Me.”




Note** I never cared for Fall. Until I met James. He’s showed me the beauty in it. I am joyful when we watch football and truly rejoice in picking a pumpkin.

Mermaids and Tom Petty

There was a time, a long long long time ago, in a different life it almost seems, that Emma screamed. Baths were the worst. I’d like to say I was always calm and didn’t lose my temper, but that is not true. I am human, and it took me many years to learn self-restraint myself and to stay calm when I was on the edge. Anyway, baths. She screamed and would not get in. When I was finally able to get her in, she’d be fine until it was time to rinse her hair. She was 4. Every evening was a struggle.
I used her love of mermaids to my advantage. “Pretend you’re a mermaid, Emmy. Lie back in the water and float. So she did, happily. The shampoo and conditioner would come out in the bath water as I gently worked my fingers through her hair.
Then, came her own rigid routine she insisted on. After the bath, she had to be dressed in her jammies- either a long nightgown or a 2 piece set. I had to read or tell the exact same story(ies) every night. Then, it was imperative she change out of the clean pajamas and into one of her many princess dresses. And that’s how she slept.
Oh, I remember getting angry. Trying to force her back into pajamas. I remember being exasperated that she wouldn’t fall asleep.
I didn’t yet have the wisdom to appreciate those moments. I was still learning. And I had a 1 1/2 year old who really, really disliked sleeping. I was lucky my girl who didn’t want to fall asleep stayed asleep almost every night for 12 hours. And she took long naps.
Fast forward a couple of years later- rinsing her hair was easier. But now, at age 6, she would laugh uncontrollably as she splashed and sloshed the water out of the tub, flooding the bathroom.
I remember wondering if she would always do that. I remember being angry. I remember not realizing that she was in her own world- in the ocean, swimming, being a mermaid 🧜🏻‍♀️. My world and my rules weren’t always relevant. I was a tired momma, all alone, hating that I had to go back to work, hating the situation I was in, sad, bitter, desolate.

So, as I think of the lyrics to Tom Petty’s “Square One,” I think of how it DID take a long time to get back here. I’ve been on a journey with her this whole time. Oh, we’ve grown so much.
I’d change a lot. If I could go back. But I cannot go back. I can only learn and move forward.
I look back now, and I think, I DID pay attention. I knew I could use her love of mermaids. I did encourage her to be herself. I got her all sorts of dresses and costumes at the thrift stores and made some myself. I DID recognize her strengths and built on them.
I am my own worst critic. That voice of mine inside my head is a huge bummer. I don’t know why she hates me sometimes.
#autism #epilepsy #autismmom #loveourlife #lifeisajourney

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 😂

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. ❤️

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