Autisable

autistic

a feeling
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Jessica

Under Siege


A feeling.
A feeling like nothing you have ever felt before.
All consuming. Eating you. Creeping though you to cover every last inch.
Nothing can stop it.
It numbs your touch.
It makes you weak.
You shake.
Tremble.
 
Trying not to fall.
The world starts spinning.
So dizzy…
The merry-go-round doesn’t stop. 
You hold still. You can’t close your eyes. It only gets worse.
You fight the light.
You fight the sounds.
Every movement. Every step. Every breath. They just bring more pain.
You start to sweat, yet you are freezing.
You brain just seizes.
You can’t think.
You can’t process.
You can’t function.
You press on knowing you can’t quit. You can’t pause. You can’t stop.
Nothing helps. It doesn’t end.
Suddenly you feel nothing. The buzzing creeps through your body from your fingers and toes rising like a great flood. You go numb. The whiteness creeps from all corners of your vision and you’re blinded.
Then it passes. The world returns. The pain continues….
This is my reality.
——————————-
I don’t often write about me. I write about my son. Our journey. After all, this is what it is all about. I’ve been hearing the assumption a lot lately that life has to be so difficult or so hard raising a child with special needs.
Nope.
Living with a migraine/seizure disorder is hard.
Waking up literally every day of my life with a headache is hard. Every.Single.Day.
Waking up every day with some level of fear over what the day will bring.
The only variance I have is just how bad it hurts. Some days it’s an annoying twinge. Other days it’s a full on attack.
If I wake up and I’m already under attack I can pretty much guarantee it will be a day from hell.
Nothing can alleviate the pain, the dizziness, the nausea, the sensitivity.
Any sudden movement will threaten to send me spiraling to the floor.
There are moments I pray for a seizure. Why? Because when my brain gets stuck and I’m completely numb it is the only relief I will get. The pain won’t go away, but I can function again. Sometimes it takes minutes. Other times, hours.
I don’t get time outs. I don’t get sick leave. I don’t get to go hide in a corner.
I am a single mom. My son needs me. I am on duty 24/7 no matter what.
That, my friends, is hard.
Not my son.
Not Autism.
Chronic pain.
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Dear Teacher
Bloggers
Jessica

Dear Teacher


On one hand I can understand how innocent you think your project is.  Just send home a paper about ancestry and ask kids to have their parents fill in the ancestry for mom, dad, and both sets of grandparents.  They return with it, you have a great class discussion, everyone learns something.

I have one problem with that. The traditional mom-dad-kiddo family is not so traditional any more…
What about students in those non-traditional families? Those in foster care? Single parent households? Adopted? Kinship care? Protective custody?
What about them? They may not know. They may not ever know.
Did you think about the families who had to deal with parents who’s rights were revoked? Families who were abandoned? Children in foster care who will never know anything about their birth families?
Imagine my shock when my son produced a family tree paper asking for his family ancestry. Imagine my shock when he asked me if he had a father and why he couldn’t remember him.
Let me share something with you, you can’t spring something like this on families and assume all will be well.  My honest response was not pretty. Truthful. But not pretty.
It shouldn’t matter. Honestly, I didn’t want to really discuss it because it shouldn’t matter. He technically does not exist. But thanks to you… He now does.
My son isn’t alone in how much he struggles.  Many children, disabled or not, struggle mightily.  Can you imagine how the child without one or both of their parents feels when they bring this paper home and can’t fill it out?
That is the case with us. Technically, his father does not exist. He is not a conversation that happens.
You see, a number of years ago the court decided that he was, in fact, a rather crappy and immature human being and revoked his parental rights. They saw him as unfit if you will.
You read that right, the court revoked his parental rights to his child. Not that he ever wanted anything to do with the kiddo…
Let that sink in.
I’m sure you’ll feel mortified when you read my note and find out that his father’s rights were revoked and that until now, he didn’t even know he should have one. He is not a topic of discussion.
The kicker? I guess they really don’t share custody information despite saying they do and requiring me to prove it to the school with a copy of the order… Well, so much for that.
I’m really surprised that you would make such a basic assumption about families in this day and age.  At least warn the families that such a project is coming home. Let the family prepare for how to answer those questions or to opt out.  It’s really not something you can spring on someone like that.  I know I’m really bad at making things up on the spot…
It has really opened some wounds for me in many ways… The kiddo is struggling enough and now he knows his own father couldn’t be bothered with him. He doesn’t know why but I do. I won’t write it here because it’s reasoning that needs to come directly from me to my son, but I will comfortably say that he needs to burn in hell for what he said to me and the language he used…
These kinds of questions, especially without any preparation, can (and have) become a serious issue in a household like mine.  It’s not a subject that can be taken lightly or easily.
I went to Facebook with this because I was so upset.  My concerns and upset were shared by many from different backgrounds. I have adopted friends who especially felt the pain of it having done these types of assignments in the past but were left invalidated by it.  
Every family is different.  Family dynamics are different than they used to be.  Teachers need to be sensitive to these ever changing dynamics.  Teachers need to respect and be sensitive to how families operate today.  We long longer have the dad-mom-kiddo norm.  It is simply no longer the norm.
Please, be more sensitive to the culture that exists today. Adjust your thinking and ideals to match the students you serve in your classroom.  You owe them that much.
I leave you with this AMAZING video that was shared with me.
I know I couldn’t stop crying.
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well loved
BloggersFeatured
Jessica

Of Lovies and Comfort…

I was sitting here on the couch with the kiddo last night, watching Tom and Jerry for the 342,892,758,729,514th time this week and for some reason my mind went back in history. I had been having the kind of day where I just kept seeing him in me.

When I was a baby I had a Pooh bear who I could not leave the house without. My mom had told me stories about how upset I would get and the meltdown I would have if he was ever left behind. I had to take my bear anywhere we went.

I went back to look at photos and my Pooh bear shows up in so many of them. I really did take him everywhere… He was with me while I was sleeping. He was my “baby” in the toy stroller. He was sitting next to the mud puddle watching me play. He was often tucked up under my arm. I’m not ashamed to admit that he went to college with me. Even now, he sits in my bedroom watching over me as I sleep.


(Awww…. Yeah, I know.)

If you look closely at the picture below, you can even see the stitching that my 5-year old self did in giving him a new red shirt and black nose.

I remember losing him one fall, long long ago. I was devastated. It was literally the worst thing that could happen to me. I searched everywhere for him. He was gone… I spent the winter beyond depressed, upset that my beloved Pooh was gone. I probably drove everyone to insanity constantly asking and lamenting over him. That spring I was outside playing and kicking around leaves from the leaf pile we jumped in just a few months before. I kicked him. I was beyond excited! I ran into the house with him just screaming. My mom wasn’t so thrilled but (blessedly) washed him and tried to salvage my bear.

(My bear today:)


I will never forget the day a couple of years ago when I was sick with a migraine and couldn’t even get out of bed. I was out and lost to the world, unable to move, breathe, anything without the room spinning. I recall my arm being moved, something being tucked up under it, and hearing footsteps creep away…

I looked up and discovered that Sparky had literally scaled the wall, plucked my Pooh bear from the high shelf he was sitting on, and placed him under my arm for comfort. I asked him why he got Pooh down. He said simply that because he was my bear and I was sick, so I must need him for comfort.

Wow. Just wow…

(No empathy my arse…)

Not once had he seen me cuddle this bear. Not once had I mentioned anything about this bear. He just knew, on his own, what the bear signified and decided that I needed him. He was about 8 at the time.

Sparky didn’t have anything that he was attached to when he was a toddler. He was three before he found something that had that affect on him. Once he found it though… Oh man… I got a taste of what I had put my poor mother through.

My son had come across a stuffed frog at the day care he attended. It was already well loved and was missing an eye. He hated leaving that frog behind every day and would have a major meltdown every day when we left. It was always the first thing he went for when we arrived in the morning. After about 2 weeks the day care staff gifted the frog to him because he loved it so much.

That frog went everywhere… He slept with it. It went to the store. It went to the doctor’s. It went to Grandma’s. It went to parades. It went to the beach. It even still went to daycare. It went everywhere with us for years. If we ever forgot it (which was rare) we had to go back. It was like he couldn’t function without it. I don’t think we ever lost the frog, I was very careful about that knowing how heartbroken I was by my missing Pooh bear that winter.

Over time he added to the posse who left the house. We added in a red puppy and a raccoon. To this day, the raccoon (also the first animal he’s EVER named) is the one he takes everywhere.

(The puppy, the frog, and the raccoon- all ninja’d out of the kiddo’s room while he slept:)

To this day his animals still live just as well as my Pooh bear does. With us in our rooms, by our beds. The frog, the puppy and the raccoon all well loved. And Pooh bear, threadbare and also well loved.

(Editor’s note: I feet it appropriate to tell you that I wrote this whole post with my Pooh bear tucked under my chin. I came downstairs with him in my hands and Sparky looked at me and asked me why I had my Pooh bear. I told him I just need him. He smiled and kissed my cheek. Love this kid!!)

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