Wednesday, February 26, 2014

Changes in the Wind

Ever have that moment where you are just sitting on the couch and have so much swirling in your head that you feel like it's going to explode?

Yeah. That's me tonight.

So I decided to write. Whatever comes out, comes out. :)

There is so much going on, so much to say, so much to think. It's very overwhelming.  We have a lot going on here on the home front.  Too much.  It's making me somewhat of an emotional mess.

On the plus side I did get to take the kiddo to a new psychologist this past Monday.  I took him to an Autistic focused clinic that is known for its residential treatment program.  I'm not putting him in residential treatment, its just known for that and has some top notch specialists.  That's exactly what we need...

The office was two hours away but lets face it, I'd drive to California if I needed to.  It was nice. We sat there with the intake psych for 2 hours covering absolutely everything you can think of, going over every detail of our lives, from structure to sensory needs to sleep to behaviors to you name it.  She asked great appropriate questions. She really took her time with us.

In early April we get to go meet with the psychiatrist there, discuss his current meds, and figure out the outpatient treatment plan.  I'm really hopeful that we will be able to finally get somewhere and get this kiddo the help he needs.  I'm so tired of watching my son struggle like this.  He shouldn't be.  He's such a happy, well loved child with so much going for him.  I will write more about this process later.

The influx of appointments and dedicated needs for him is absorbing a lot of time.  As many of you know, I returned to full time work not too long ago.  I made the painful and tough decision last week to withdraw from that.  My job has been really fantastic with the transition and since it is with the Federal government at the local VA hospital, they are able to make the accommodations I need and are allowing me to become intermittent.  So I will be able to work a couple of pre-scheduled days a week.  This will allow me to have the flexibility to do what I need for my son.  There are so many phone calls and appointments to be had when you are trying to get things set right!  I will sub at the local schools to fill in the voids.

It seems like a lot, right?  The plus side to this is that since Sparky now rides the bus every morning and every afternoon he won't see the variance in my schedule.  Considering how well (not!) he does with the craziness this is a really great thing.  Everything will stay the same for him, stay consistent.  It's my world that will go nuts! :)

Of course, he will notice when he wakes up and I'm still here in the morning (I presently leave around 7am for work and he's usually asleep at that time).  He will no doubt enjoy that. I know I will!

In the long run it's all for Sparky and that's what gets me through all of this.  He is my focus, as he should be.

This change in schedule will also hopefully allow me to get back to running again.  I could use the movement as it really helps with my migraines.  They are a little out of control right now.  It will no doubt do wonders for my own mental health and what is left of my sanity... ;)  Then I can create my game plan to get the kiddo out with me.  On his scooter of course. :)

So many changes going on around here.  In the long run, it is what is best.  I just have to keep reminding myself of that. I've said it before, and I will say it again in closing: We adjust, we adapt, we overcome. :)

Thursday, February 20, 2014

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.

Sunday, February 16, 2014

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.

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.


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.