Sure has been a while...

It sure has been a while since I’ve written anything. Certainly not because I haven’t had anything to say. The past two years have been a bit of a whirlwind between the major teenage years (which are still passing), the start of high school, some big changes, major behavior challenges, and other events. There certainly is a lot to say. It’s more about finding the time to sit down and write about it. 

I’ve been telling myself for a long time now that I needed to get back to writing since it is such a major outlet for me. So this will be my attempt to do so. This may shift slightly from what is going on with my son to more what is going on as a family since the dynamics have changed so much. There are just some things I won’t write about, puberty being one, which is part of why I’ve been so silent for the last two years. That’s just no one’s business but our own. 

So to give you a quick update… Sparky is now a Junior in high school. (Holy crap! I know!) He is a week into the new school year and things seem to be going quite well. He decided during his Freshman year that he wanted to go to our local vo-tech program so he applied and was accepted into the Graphics Communications program and started last year. The program has been amazing. He started his 2nd year this year. The instructor is AMAZING with him. We are blessed in that his daughter has an Autistic son, so he has the patience, understanding, and approach that we need with Sparky. Right now he’s meeting all of his academic goals so he is actually looking to graduate on time with his peers. It’s taking a lot to sink in! In two years my baby is going to graduate from high school! This was something that was so hard to see when he was in Kindergarten…

I’ve spent the last two years working part time for an agency that sends me out to work with students in the classroom. Basically I run interventions and implement behavior plans that allow special needs/at risk children to remain in regular education settings and teach teachers and staff how to run the plans themselves. It’s stressful but very rewarding. My migraines have gotten so bad that I’ve actually been on disability for the last year, so I just work a couple hours a week to get out of the house and keep working with the clients that mean so much to me. My health took another nosedive earlier this summer when I had a couple SVT episodes in July. We are currently trying to figure out what is going on with that. We shall see what that does for my work and fitness future.

The redheaded husky has now been joined by a black/white sassy little girl that we rescued last summer. She is also a husky and came from an abusive breeder so she required a bit of work. She is a lovely little thing and is full of spunk and the perfect complement to the redhead. I was off for almost 5 months and it’s been a real trip trying to drink my coffee with my mug in the air while they run back and forth over my lap! I wouldn’t have it any other way though. Watching her blossom from this shy, terrified, uncertain puppy into this fully confident, sassy, quirky, hilarious creature has been completely worth it. The cats are, well, cats. Ollie is still very much Sparky’s love though he’s suffering his own health crisis. He suffered two collapsed lungs 2 summers ago and has been a medical miracle ever since. He’s still with us being the ornery yet lovable old man he is and we couldn’t be more thrilled. Though he has lost most of his teeth so now he has to eat wet food, so…. Yeah.

So that is essentially what we have been up to. I hope to have more to come on life, what is going on, the transitions into adulthood, and my insights into what we’ve experienced. There have been a few eye opening experiences that have connected a few dots. What a whirlwind it’s been!

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.

Migraines, trantrums, and "wth?"

When you suffer from migraines frequently like I do (the kind that never actually go away, leave you literally on the floor, eyes squeezed shut, completely down for the count and incapable of even making a squeak) you end up with a lot of time to think. Since you can't do anything else but lay there and you don't really want to dwell on the fact that your head will probably explode at any second, you try to occupy yourself. 

Today as I laid on the couch with two of my kitty pride purring away all cuddled up with me, while my totally awesome and thankfully pretty independent child kept as quiet as he was physically able, very mindful of Mommy's ailment, I had that opportunity. These are the kind of moments you have as a single mom where you have those "what if" and "holy crap" moments. While I have learned to function despite the pain, nausea, sensitivity, etc, that goes with migraines, enough to know that if something major happened I'd still be able to work our way through it, I still freak out a little over not being able to respond.

This thought path led me to think about how hard it is to be single mom with an Autistic child. I have pretty much spent the last (almost) 10 years raising this kiddo alone. I've been getting these knock down, drag, out, ha-ha you can't do sh*t today cause of me type migraines for over 15 years. Never did I think I would ever have to figure out how to manage the two. All I can say is, "Thank god my mom lives so close!!!!" Over the years it has become a less frightening thing for me as my son gains independence and knows what do to do if something happens. Granted he'd most likely call Grandma before 911, but I'll take it!

This then led me to think about how hard it is in the dating world to find someone who can honestly handle kiddos like mine.  Thankfully, I found such a guy in my fiance, M. He is actually a little upset that he is out of town right now and unable to be here during this current episode. All I can think is, "How lucky am I?" while I sit and smile to myself. In the past with guys I've dated, they've just avoided me like the plague. This guy wants to be here, knowing all he can do is curl up with me on the couch, make sure I'm ok, and take care of my son.

Holy golden jackpot, Batman!

This then led me to think backwards through our relationship and how M has been with my son. There was a very defining moment for me, early in our relationship, where I knew we'd be ok with M. We had been together for maybe just over a month.  I had to go to rehearsal and M said he'd watch the kiddo and everything would be ok. This stopped me dead, for two reasons really. One: I never leave him with anyone who doesn't know this kid inside and out, and two: I was sure that the relationship would be heading out the door in the days following... After all, at this point I was used to people running from our situation. After he assured me many times over and told me to get the hell out already, I went to rehearsal, frequently checked in, got reports that all was well. When I got home both were all smiles and they were watching Over the Hedge. I sent the kiddo to bed and everything seemed fine.

Then that defining moment happened.

When I came back downstairs I sat on the couch. M looked at me and said he had something to show me.  While I was gone the kiddo had misplaced a toy. At the time he was still very much of the mindset that if it wasn't where he thought it was then it was gone forever, stolen, missing, he'd never see it again. Well, apparently he lost something. M had recorded the ensuing tantrum partly so I could see what happened, but I think, mostly because he was actually quite amused by it. Why was he amused? Well... M is an extremely laid back kind of guy, very sharp contrast to me for sure. Not much ruffles him at all. My son can be overly dramatic and somewhat theatrical.  Picture a scenario like this:

A is laying on a stability ball, crying, screaming, yelling, just losing his mind, incapable of listening to reason.

A: It's gone! I'll never find it! Mom will be mad cause I lost it! (screaming continues)
M: Well, if you can stop crying long enough and tell me what it looks like then we can find it.
A: It's gone! I'll never see it again!
M: It's not gone, we can find it. Why don't you tell me what it looks like?
A: (screaming and sobbing) It's gone!!! I'll never get it back!!!! (more sobbing)
M: A, we can find it. I promise. If you can tell me what it looks like I can help you find it.

This goes on for about 5 minutes or so when...

A suddenly stops.... Looks at M.... And asks hopefully, "We can find it?? Really?"
M: (chuckling at how it suddenly and finally sunk in) Yes buddy, we can find it. What does it look like?
A: Let's look for it! Maybe we can find it!
M: (more chuckling)

The wayward toy was found within 5 minutes.

Throughout the exchange you could hear M give a little chuckle during the times when A got overly dramatic (which I will admit, those moments really are funny). What got me the most, was how calm M was the ENTIRE time and how he instinctively and simply talked A through the crisis. M just kept on talking to him, trying to talk him down and realize that the world was not ending.

That's exactly what I do with him. Well, bugger. And it just came to him naturally.

I never hesitated over the idea of leaving those two alone together from that day on. The two of them are like partners in crime hiding evidence of ice cream cones and comrades in arms when ganging up on Mommy. And let's face it, sometimes he's better at handling times of crisis than I am!

I snuggled down further into the couch pillows and kitty fur. Yeah, we'll be just fine. Are we lucky or what?