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!

The Power of Words

We say all the time to never underestimate the power of a kind word. It is very true, regardless of who you are speaking to, be it a stranger, friend, family, or even your own child. It can have such a profound impact on that person. Words are powerful, for better or worse. They can make or break a person or relationship.  They can make or break a moment or experience. I think this is especially true when it comes to our own children. Especially when they suffer from low self-esteem and struggle so much with their own self-worth.

Last week I went on a sailing regatta and boy did I need the break! I felt like I was going stir crazy and just losing my mind. I was becoming short with everyone and everything and I just couldn’t curb it. We were having a really rough start to summer and I was really stressed.  The kiddo was testing every boundary under the sun and it was just teenage attitude to the nth degree and then some. I wasn’t sure he was going to survive much longer.  I was counting down and really looking forward to a few days away, completely disconnected from the world.

During the trip I received a pretty juicy concussion.  I was pretty out of it and very tired (naturally).  A few days later when we returned home and I picked my son up, I promptly fell asleep on the couch at a mere 4:00 in the afternoon. Oops. I remember him waking me up at some point to ask me something about dinner and chicken noodle soup. Then again with something about showering. Then finally about bed. At that point I was so groggy I didn’t even know what day it was. He reminded me of his rule of going to bed (if mommy is too tired then mommy needs to go to bed and not sleep on the couch) and I sent him to bed. At this point I got up, tucked him in, told him I was sorry for being so out of it and that I was proud of him for being so on the ball, and went to bed myself.

The next day I didn’t fare much better but I did make it to work and get through the day. He helped me quite a bit throughout the day with getting the dishes done, helping me make dinner, getting things I needed when I was too dizzy and sick to move, and making sure he got his shower and took his meds. My boy was on the ball. I kept telling him how proud of was of him and how amazing he was being.

Things have pretty much continued in that way. He’s being patient with me. He’s reminding me of things. He’s showering me with hugs and kisses. He’s letting me sleep. He’s letting the dog in and out without screaming at the broken screen door. And I can only respond with how proud I am of him and how amazing he is being. He really has been a rock star.

Here we are today and I’m in my room after a shower and he comes upstairs with the towels I had started to wash the other day. Dry. Ready to be put away. Big grin on his face. He started his own laundry without being asked. When he realized he forgot some clothes, he didn’t flip out (which is HUGE) he just came to me and said he didn’t know what to do. So I helped him build a load with a blanket and two jackets I couldn’t fit in my wash from the trip.

I got to thinking while on the trip about all the hype over having your kids be outside and creative and not on anything electronic over the summer. At first I thought it was a great idea, let’s have him be creative first before getting on the computer! Have him draw, have him use Legos, whatever. But you know what? Who cares? He goes to a camp with other Autistic kiddos for socialization and anger management skills. When he is on the computer he IS creating. He’s making computer game levels and characters. He works so hard all school year to keep it together, he deserves the break too.

The entire dynamic in this house has changed. He’s listening again (actually coming the first time I call, not after I turn into the crazy woman and go looking for him), he’s doing what he’s being asked to do, he’s not whining, he’s not yelling, and the attitude? So far it’s on hiatus. He is making me so proud with how well he’s been doing. He’s been making sure I’m ok. He’s been snuggling in with me in the morning. He’s been getting me anything I need if I can’t get up at that time due to dizziness. Last night he even made me a S’more in the microwave so I could have a snack too. I’ve always known he’s the best kid out there, lately, he’s been proving it all over again. All because I keep reminding him of how amazing he is.

A Candle In A Hurricaine

This post is probably going to come off a bit harsh.  If nothing else, a bit rough.  There is a hard reality to this life, one that often sits in the shadows and no one wants to look behind the curtain to dust the windowsill.

The past year has been a pretty rough one in the AMD household.  Sparky is hitting puberty at this point (he is 13 now) and all of the changes and hormones are making things much more difficult.  He doesn’t understand what is going on and he thinks there is something wrong with him.  Yes, he’s been told by everyone from me to the psychologist to the mobile therapist to the mental health therapist that it’s all normal and he’s ok.  For all he understands, we may as well be talking to the wall.

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you've lost your fight
But you'll be alright, you'll be alright

The past several months have led to a surge in behaviors as he has both regressed and escalated.  His coping skills and ability to manage has regressed.  His behaviors have escalated.  At the moment we are working overtime to keep him safe.  I think the worst of the issues we face is a strong elopement urge.  His need to wander, especially at night.  If you recall he did this years ago, during the daytime, but it was rare.  It’s a more common occurrence now and this time, at night.  He still has absolutely no sense of danger.  How much more frightening can you get? 

'Cause when push comes to shove
You taste what you're made of
You might bend, 'til you break
'Cause it's all you can take
On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand,
Then you stand

I always took for granted that the house alarm would work so well to keep him in the house.  That was quickly erased when he made the connection between the key fob on my keys and the house alarm.  About two weeks ago, just as I was falling asleep, I heard the door open.  He used the fob to disarm the system and go right out the back door.  Being deaf I never actually heard the crazy loud beep of the system disarming (but it must have roused me subconsciously enough to hear the door).  I don’t even want to think of what would have happened had I not woken up.  We live in an area where we are surrounded by main roads.  He could have been gone in no time.

Life's like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you're given before it's gone
And start holding on, keep holding on

It doesn’t end there.  Naturally.  Why would it?  His mood is no longer stable.  We can’t seem to find a good balance anymore.  He’s been depressed, aggressive, and self-injurious.  I ended up finding him a new psychologist just two months ago.  Around that same time we added in Family Based Mental Health Services (the most intensive services you can get).  We adjusted his medications.  Everything feels like a waiting game anymore.  We are now looking at taking him to one of the major hospitals a couple hours away to have him evaluated by the psychologists there (Cleveland, maybe Pittsburgh) and see what they can do.  I don’t seem to be catching a break and it doesn’t look like it’s going to happen any time soon.

'Cause when push comes to shove
You taste what you're made of
You might bend 'til you break
'Cause it's all you can take
On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand,
Yeah, then you stand

I now live in this constant state of fear.  I lock up the keys when I go to bed.  I sleep lighter than a feather.  Every night it’s the same routine:  Goodnight, I love you, Stay safe, No shenanigans, Stay in bed, Right to sleep, DO NOT LEAVE THE HOUSE.  Being so disadvantaged I am terrified he’ll find a way out and I won’t hear him.  By the time I discover it, it will be far too late.  I thought I knew was sheer exhaustion was.  I was totally wrong.  I sleep all day when he’s at school.  I can’t concentrate.  My migraines are sheer at peak level “Hell.”  To say I’m stressed is probably the understatement of the century.

Every time you get up
And get back in the race
One more small piece of you
Starts to fall into place
Oh

All I can do is keep pushing, keep moving.  Just pick myself up, dust myself, and keep going.  I’ve been fighting for so long I can’t possibly stop now.  There are days, I won’t lie.  So.  Many.  Days.  Where I just want to throw my hands in the air and give up.  I’m so worn down, so frustrated, so exhausted, so defeated.  I cry more now than I think I ever have, I actually cry daily, and it doesn’t take much to start the flow.  I often feel like I’m riding an emotional roller coaster to hell and back again.  Then every morning, when I wake up and he’s safely in his bed still, I feel better.  I breathe a little easier.  I put on my happy face mask and thank God for keeping us through another night. 

Yeah, then you stand,
Yeah, yeah, baby
Woo hoo, woo hoo, woo hoo

Then you stand, yeah, yeah

Rascal Flatts - When You Stand

Why Do I Run?

There are so many reasons why people run.  I could spend all day just looking them up and determining that each one is valid.  I also run for many reasons.  I've been a runner my whole life and I absolutely love it.  I run several times a week.  It brings me peace of mind and always gives my mood such a huge boost.  Basically, running is my sanity.

This morning I was running in the park by the beach and there's a big celebratory weekend to promote awareness of the area and it's preservation.  Not really recalling that it was this weekend I went there instead of my other running location, a trail in the woods.  About 3 miles or so into my run some rude girl who was obviously a casual rider made some rather derogatory comments to her friends about my face and running in general.  This really set me off.  I mean, just the sheer rudeness of it.  If you are going say nasty things about people, at least say it out of earshot, you know?  It also did not escape my notice that I was a third of her size.  I have also become acutely aware of all the glares I get from heavier moms of special needs kiddos when I pick up or drop off my son to camp.

After venting about the girl today on my personal FaceBook page a friend made the comment that women in general are just nasty to each other.  She recalled a friend who ended their friendship after she lost a lot of baby weight years after the birth of her daughter.  It was only then that my friend realized that she was smaller than this ex-friend.  She made a great point in that some people equate trying to be healthy with selfish parenting.

While I realize I am lean and in excellent shape, I fail to see how this equates to selfish parenting.  When did having a child who needs extra care give the excuse to let ourselves go?  How does it give us permission to sit on the couch and eat poorly day in and day out?  How does this make it acceptable or somehow forgivable to stop caring for ourselves?  As far as I'm concerned, there is nothing selfish about what I do.  It has nothing to do with looking good or wearing a bikini and everything to do with my health.

I figure, if I have a child with special needs, I better plan to be around for a very, very long time!  I mean, jeez oh Pete! Have you seen the current system for disabled adults?  My health cannot be an added stressor to my day nor can I allow it to be a looming threat.  The only way I can ensure that, is by running and being healthy.  I often joke that I'm not training to be skinny, I'm training to be a fit bad-ass.  Well, it's true!

As an added bonus, since my son is very aware, he can see that his mother exercises and eats well and spends her time with people who support that.  In turn that sets a good example for him and he is more likely to follow that lead.  He also knows that his mother cares enough to be around for him for a very long time.  How is that selfish or bad?

My son being able to tell someone, "My mom runs because she loves me," is the best thing I could ask for.

So I guess in a way, I am a selfish parent.  I'm selfish enough to look out for my well-being for the sake of my son.  If I don't take care of me, how can I take care of him?


*Editor's note: I am not intending to bash anyone for their lifestyle.  To each their own.  I do not take issue with what people choose to do, only with how they treat me for my choices.  There is a double standard that exists and is total bullshit. While I know many suffer health issues, none are capable of preventing even basic healthy living.  Research proves this. I've alleviated many health related issues that could have left me couch bound.*

Single Motherhood

Today is Mother's Day as we all know.  For some reason, this year I'm feeling particularly emotional about it.  As you all know I'm a single mom.  As in, a single mom by true definition. (Someone who raises her child entirely on her own, dad is non-existent: aka, single parenthood.)  It certainly hasn't been easy but it definitely has been rewarding.

I've had to fight for everything over the years.  Society is not kind to women in general and it is even more unkind to single mothers.  Single mothers with special needs children? Forget it!!  We are invisible to the world.  My son is only seen because I scream. A. Lot.  If I didn't, he'd be lost in the shuffle: no insurance, no services, and no where near where he is today.  He would still be a non-verbal, increasingly aggressive child.

I had to fight my way through college for my BA in Arts, then more recently for my MEd in Special Education.  I had to fight for every job I had and then fight to keep it.  As a single mom I can't just call dad in to help.  I am my own reinforcements.  I have to do it all on my own.  The kiddo gets sick at school?  It's me leaving work to pick him up.  As a woman I get paid less.  Imagine trying to pay your bills on a single, small income.  Getting a second job was a thought but never a reality.  Why?  Because when you have a special needs child, you just can't do it.  Someone has to fight for services.  Someone has to do the leg work.  Someone has to be home to care for him.  There is no tag team to happen here.  Once again, I'm left on my own. 

I would think that dating when you have typical children is hard enough.  But dating when you have a child with the complex needs that our kiddos have?  It's laughable.  With how special needs families split at such a high rate, how can our dating lives be successful?  The more care your child requires, the less time you have to focus on anything else.  Hell, you don't even have time to spend on yourself...  The balance is a hard one to find and keep.  Someone to watch the kiddo?  Can you hear me laughing yet?  On the upside, less than quality guys get weeded out reeeeeeallly quick. ;)

I make just over the limit for welfare.  Due to a loophole, a freaking LOOPHOLE, my son kept health insurance.  I often go without, making any doctor's appointments out of pocket expenses for me.  I didn't even qualify for the recent Obamacare stuff.  I made too little for it but too much for Medicaid.  I was even fined for it on my taxes this year.  Money I could have used to pay for my medical costs or care of my son, the IRS took as a fine...  Once again, we fell in the cracks.

There's a huge societal stigma on single motherhood still.  If my son does something unexpected or "wrong" then I'm to blame. Society blames it on the fact that he's being raised by a single mom.  Surely I can't raise him properly. (/snark)  They even blame me for his list of diagnosis.  (Yes, this crap seriously exists.) The attitudes I get from people are mind-boggling.

Fight. Fight. Fight. Fight. Fight.  That's all I do.  I fight for his rights.  I fight for my rights.  I fight against the stigma of being a single mom.  I fight for our ability to just live.

But you know what?

I wouldn't change a damn thing about it.  Nothing.

I love being a single mom.  It has taught us the real value of things in life.  We appreciate what little we have.  We appreciate our time together.  We actually SPEND time together.  We don't care about money or trinkets or the latest and greatest vacation.  We appreciate the beach just a mile from our house.  We appreciate the parks we can visit.  We appreciate visiting family and friends and just hanging out.  We have a love for life and the ability to actually enjoy it.  For us, the little things do matter.  (And hell, I don't even have to argue with anyone else about what I do with him or where I take him! BONUS! ;) Haha!)

For me, everything is two-fold.  Yes, the bad is as well but really I focus on the good.  Every achievement feels twice as good.  Every battle won is cause for celebration.  Every goal we surpass is defining. 

My son understands the value of love.  What it means to love someone.  Truly love.  And he is joyous, caring, nurturing, and frankly one of the best souls out there.  You won't see this child talk back to me.  You won't see him order me around.  You won't see him disrespect me or anyone else.  Something I see and am the recipient of on a daily basis as a teacher...  This is one of the best reflections you can have on you as a parent: a respectful, caring child.

Despite all of society's ignorance, this single mom (and many like me) are doing one hell of a bang up job raising beautiful children who will become amazing adults.  We defy the odds.  We are strong women who will never give up on making our children's dreams come true.  Society gives us barriers with a broken system stacked against us.  We don't take "no" for an answer.

We push through.  Here's to all the single moms (and dads!!) out there keeping up the good fight!

Elopement: Tools and Resources to Prepare

With summer soon to be upon us again I wanted to take a moment to be serious.  Weird, right? ;)

No one really wants to think about the possibility of losing their child through wandering or otherwise but it is a reality that many of us face.  With this in mind I wanted to give you a couple of quick resources that I found to help you get started in case of an emergency.  Many of you know my son wandered off 4 years ago now and we were very fortunate that he was found safely.  (You can read my posts about it here and here.)

First and foremost, I would highly encourage you to set up a meeting with your local law enforcement and local Fire/EMS departments as well.  It would be very beneficial for your child to meet and become familiar with their faces and uniforms and for the First Responders to be familiar with your child in the even of any emergency (accident, fire, etc.).  Children can be intimidated by them so it is crucial that they understand they are there to help!

If you need some assistance in that area please check out what Jerry, a New Jersey Police Officer and father of an Autistic boy, has to say.  You can see his page here and his blog here.  He wrote two amazing posts about wandering and police contact that you simply must see that he wrote for Autism After 16.

Surviving the Wandering Nightmare

Well-Informed is Well-Armed: Easing Police Response to Domestic Incidents

AWAARE has many awesome tools and is loaded with information to help families and first responders.  You can access their website here.  They do have the Big Red Toolbox but they have digital tool boxes as well.  I would definitely check out their Wandering Brochure for information about wandering and tips you can use to prevent wandering and to prevent a tragedy in case wandering does occur.  You can access the brochure here.

To help you stay organized in your planning you can use the Caregiver Checklist here.

The first one I want to toss out there is a Family Wandering Emergency Plan.  It can be used for any family member who may wander off.  It helps you prepare ahead of time in case your child wanders off so that you know what to do.  It allows you to come up with search areas and people to search those areas, emergency phone numbers, what to provide when you call 911, and it gives you other numbers such as NCMEC.

This form can be found here.

The second form is for you to give first responders and is an Autism Elopement Alert form.  This form is used by those first responders to give them identifying information, a photo, and areas where your child may be found.  It includes medical diagnosis, medications, if they are verbal or non-verbal, their preferred method of communication, etc.  This form will help pull much needed information together in one spot to aide in helping your child be found quickly.  Take this form when you go to meet them!

This form can be found here.

You can find all of their safety materials including the toolbkits for Caregivers and First Responders here.

In speaking from experience, please be prepared!!

**Editor's note: This is meant to get you started.  Please talk to your local Autism groups and First Responders to get additional safety and preparedness tips and resources for your child.**

Our Great Summer Wrap-Up

It's been a couple of months since I've posted.  We have had one heck of a busy summer...  The past few months have been full of changes for us.  Some are for the better, some were simply devastating, and some just were.

Our summer did not start well, as many of you know.  We lost my Grandmere the first week of June.  That was one hell of a week...  Not even a month later my Aunt went into the hospital with stomach pains and while she was in there her husband (my Grandmere's son) went in after having a heart attack.  He ended up needing open heart surgery.  While he was recovering my other grandmother went into the hospital with chest pains.  This was followed by my own collapse in early July while the latter two were still in the hospital.

Crazy right?

We are all now on the mend and mostly recovered, thankfully.  We got to a point where we were about to ask the hospital for a 5th floor multiple room discount. ;)

For six weeks this summer we had the opportunity to send Sparky to a social skills camp run by the agency where we receive our BSC/TSS services.  The camp was run by our former BSC/Mobile Therapist who recently left our case.  We weren't really sure how he would do but were hoping for the best.  On day 2 of camp he was already asking to stay home next summer and not attend any camp.  This did not bode well...

Turns out it was wildly successful!  He ended up having a great time and made a few friends in the process.  I was really excited when on the last day of camp he received his first phone call from a friend! YAY!!!!  It was hilarious to listen to and made me realize that we need to work on his telephone skills. BADLY... Haha!

Sparky also went on his longest trip away from me!  He went with Grandma to visit my sister for six days.  If you've been on my page recently you'll know that it was a recent trip and it went quite well!  While he was off visiting his Aunt I participated in a weekend race across Lake Erie.  Oh, what fun that was!  After I returned I was thankful for the extra two days of peace before the kiddo came home so I could recover.  Sleep was not something to be had on that trip!  ;)  When he came home he barreled into me like a football player and nearly took me off my feet!  He was so excited to be home again.  He walked through the house and (naturally) tracked down each cat to greet them and tell them how much he missed them.  I'm not sure they missed him nearly as much as he missed them, but ya know... ;)

This summer also saw the end of my engagement to Strike.  He's still around as he is still important to us but the split needed to happen.  We still care about each other but it was just something that was a long time coming.  It was a really hard decision but it is for the best.  Sparky handled it quite well and seems to be none the worse for wear.  He also understands that Strike is still available if he wants to talk to him and he isn't completely gone from his life.  I think that helps a lot and has made all the difference in how he's handled this split verses how he still hasn't fully recovered from my split from Ears many years ago.

Now we sit here looking at the future!  The kiddo starts sixth grade this year (who told him he could grow up????) in middle school and I start a new job in our home school district.  I'm also going to be starting rehearsals soon for my next show now that I have the time again.  I can't wait!  My older sister (the last of us to make such an announcement) has finally made it public that she is due in January!  I'm extremely excited about this and I so can't wait! BABY!!! :D

Things are finally looking up for us as we prepare for some pretty major changes.  I'm really excited for what is to come and I can't wait to see where the road leads!  School starts a week later this year on Sept 2nd which means we have an extra week to enjoy summer!!

Now I have to figure out what exactly to do with it...  I had all these plans to visit different parks and museums but now time is running out.  I think we'll stick with the local zoo, baseball games, and the beach for now.  :)

Good luck with your back to school adventures!

 Here he is squeezing the bejeebes out of me and my face upon his return home. Ouch!!

How Dare You?!

I have rage.

It's not often this happens, but tonight, it seems to want to pop out.  I do want to note that this isn't directed at anyone who is on my page.  You guys are awesome and a pillar of support!  I've gotten nothing but love from you and I appreciate it.  This is aimed at people I meet in life.

So here it is, with a trigger for... Well, everything.  I don't usually swear but this has a few choice words in it as well.

I am sick of having my judgement questioned.  I don't give a flying banana about what your ex girlfriend/boyfriend/plaything/neighbor/whatever did with their child 10 years ago that you learned from them.  It has absolutely nothing to do with me or my son.  A lot can happen in 6 months let alone 10 years.  Odds are we have either tried it already or I already know it won't work or it's just plain dangerous (some things are).  After all, I know my son.  I know our story.  For the love of God stop arguing and telling me I'm wrong.

How dare you come in here and assume you are right about everything and I am wrong.  Guess what?  You are wrong.  Just as sometimes I am wrong about things, you are wrong about this.  Don't come barreling in yelling at me about how I don't listen or am a bitch because I don't agree with what you say.  I've been in this game a long time now.  I've been raising him for over 11 years.  Alone and quite successfully I might add.  I've been living with myself for over 31.  I'm listening to the voices that actually matter.  I'm listening to the Autistic adults and children who have so much to say.  I'm listening to myself.

I don't give a damn what some researcher or shiny new therapist says.  They aren't the voices I'm giving all the credit to.  They want to make a name for themselves.  I want peace in my household and in my son's heart.  When an Autistic adult, child, or even my own conscience is telling me, "For the love of all things Holy don't ever do that! Try this instead, it worked for me, maybe it will for you too." I'm listening.  Those are the voices that matter.  Autistic voices are voices for other Autistics.

I'm not going to do anything to intentionally provoke him or cause a meltdown to 'change things up' or 'get him used to it' or 'help his character' or whatever the hell piss arse reason you want to throw at me.  Would you intentionally shoot your mother in the face for no good reason?  Would you hide the keys to your spouse's car to force them to be flexible?  Would you poke and prod at your typical child just to see them cry?  Then why in bloody hell do you want me to do it to my own child?  Yes, I avoid things that trigger him.  Yes, I watch and sometimes cater to his moods.  Isn't that what we all would like?  Who doesn't want to be left alone when they are angry or sad?  Who doesn't want to laugh and run when they are happy or excited?  It's called RESPECT.

Have you noticed how peaceful my house has been for the past several months?  That isn't a coincidence.  That's me taking control and refusing to cater to people who would poke at him, rile him up, then tell him he's wrong for being upset and be 'disappointed' when he can't remember his coping skills.  Seriously, what the hell is that baloney?  Do you think with 100% perfection and clarity when you are angry or upset?  Didn't think so.  Why do you expect it of my adolescent son?

I refuse to sit here and be dictated by a society who wants to fit my son into some predetermined, twisted mold.  I'm so sick and tired of prepping him for how the world will react to him and how he can 'fit in' with his peers and look 'normal'.  Who the bejeebes is actually normal anyway?  Talk about one hell of a subjective concept!  How about we change your laugh from a titter to a good old fashioned guffaw?  Maybe we'll train you to cut your spaghetti up instead of twirling it on your fork and slurping it?  No, don't talk with your hands!  You better sit on them so you don't 'stick out.'  Oh, I know.  We'll teach you that if you don't wash your hair before washing your body then you simply are not doing the steps properly.  Sound foolish?  It should.

For the love of clouds, society needs to buck up and accept him for who he is, exactly how he is, whether they like it or not.  Let's face it, he is one hell of a rocking awesome kid!  I refuse to squash that!  I spent over 30 years trying to fit what society expected of me and it damn near KILLED me.  I'll be damned if I'm forced to make my son do the same thing.  Especially since he was so close to where I was to begin with.  He will not suffer what I had to suffer while there is still breath in my body.  Fuck 'polite society' and their wishes.  There is nothing polite about them.

Let's recap.

Don't tell me I'm wrong.
Don't judge me, and while you are at it, get over your own ego.
I'm listening to the voices that really matter.
He will be forced into some cookie cutter statue molded by the (not so) polite society over my dead body.
I find it no small coincidence that when I listen to my heart and the voices that matter, those are the times when my household is the most at peace and we are our happiest.
RESPECT who we are.

Acceptance.  Period.  It doesn't involve ifs, ands, or buts.  Only love of the person for who they truly are.

He's Back!

Oh my... So much to stay and no clue where to start.  But that's a good thing right?  The last four months have been pretty busy in this little household.

We struggled a lot over the winter months with the kiddo.  His behavior and mental state was sliding backwards at rapid pace.  In desperation I called a specialized psychiatric facility in a city two hours away begging for help.

And help came. Oh boy did help come...  The kiddo was to the point where he was bleeding daily from scratches he inflicted to his face.  He was constantly biting himself.  Always upset.  The slightest thing in the wind would set him off.  He didn't see the future.  He was convinced he was going to die.  I didn't know what to do.  I cried.  A lot.  Where was my happy boy?

The call to the Autism Unit changed everything.  I called in mid-February but I had to wait over a month for an appointment.  I was hoping for sooner but I was taking what I could get.  On a Friday not even a week later I received a call from them, they had a cancellation for that Monday, did I want it?  Oh, hell yeah!  I got off work and we were on our way!

The appointment was just a starter appointment so to speak, nothing more than an intake but the psych we met with took two hours to thoroughly go over everything with us.  Every last little bit of history, every issue, every thing.  They set us up with an appointment to meet with the psych he was going to see for med management.  I felt pretty good after that.  FINALLY someone was listening to me.  Someone was actually HEARING what I had to say.  Someone was going to HELP.

About 4 weeks ago, we traveled the two hours to meet with this psych.  He was AMAZING.  He actually spoke to the kiddo, on his level, one on one, and LISTENED to him even when he went off on a story tangent.  Truly listened.  Grandma went with us and between us and the kiddo we were able to cover and remember everything we needed to.  This appointment was the best I have ever been to...
The scariest part of the whole thing was this:  The psych kept asking me the same question over and over and over.  He kept asking me what meds my son was on and at what dosage.  In the hour we were with him he asked at least five times.  It never really struck me why until the end of the appointment.

He turned to me and said: I don't know why your son is on those medications.  That is not what they are used for.  The side effect of the one is drowsiness but it's not an actual sleep aid and the other medication is a secondary medication, it's not used for what he's using it for and it's being administered wrong anyway to have any effect.

Umm... What???  So, basically the kiddo was placed on the WRONG meds at the WRONG schedule for the WRONG reasons and had been on these meds for almost two years causing him serious weight gain.

Well no wonder it wasn't helping!!!!!  The psych up here in our hometown spent his time yelling at me because he really WAS incompetent and didn't want me to do anything about it!

I rarely swear on here but jeebus that guy can seriously go fuck himself....  Anyone who is going to give a child the wrong stuff... Well, let's say there's a special place in the 9th circle of hell for their kind.... (He didn't like me as it was because I told him he could essentially shove it every one of the 300 or so times he wanted to place the kiddo on Risperdal. NO THANKS!)

The new psych set up the kiddo on a new med schedule.  We started with the anxiety issue (to change only one thing at a time) and he was placed on a real anxiety medication.

Holy crap I can't even tell you the turn around we saw....  He started smiling.  He started laughing.  He started playing.  For the first time in YEARS he wanted to go outside and play.  He told me he could see the future now (how low must he have felt to make that statement? :'( ).  I essentially have my kiddo back.  The kiddo I have not seen in FIVE YEARS.  I wish I was kidding.  I wish I was exaggerating.

I have my boy back.  I knew he was in there somewhere.  I knew it.  I had to fight, for years, to find someone to listen to me to get him back.  The school has noticed and his teachers tell me how much they love this new kiddo (they loved him before but this non-stop smiling kiddo is just so wonderful to see) and how well he's doing.

He's approaching people!  He's introducing himself!  He's engaging with his peers!  He thinks he's the smartest kid ever!  He's realized he CAN control his body!  He's realizing that happiness really is possible!

I knew he was in there.  I couldn't give up hope that someday we'd be able to pull him back out so he can be the fun loving kiddo we always knew he was.

We see the psych again on Friday.  I can't wait to go.  Things can only go up from here.  Honestly, after this whole post anything else I have to share seems so small, so inconsequential that it just doesn't matter.

The only thing that matters is that I have my kiddo back.  This summer promises to be a good one now.  Oh the things we can do!!

Other things that have happened? Well... Um... We went to visit his favorite aunt (Aunt C) for Easter and he didn't perseverate on the house burning down or what would happen to the cats (how HUGE is that?!?!?!?!?!).  I'm less than two weeks from graduating with my Masters in Special Ed (I know right?!?).  And um... My house is actually clean.

Yeah.  None of that is nearly as exciting has the happy, playful, social-without-prompts, can-see-his-future-now, kiddo that has returned to me. :)

No Island Here...

There is an article floating about from HuffPo about things that an Autism parent will never say. (You can see it here.)  At first I didn’t really know what to make of it. I still really don’t.  In the article it talked about how stressful raising an Autistic child is and how lonely.  It said parents are peacekeepers from everyone to the family to school to complete strangers.  It claims we are isolated as parents of Autistic children.  It talks about hurtful comments.

It gives the impression that it is all inclusive, that all parents feel that way.

I don’t.

Maybe I don’t have guilt over meeting my son’s needs because I only have him.  I am able to devote my time to him without “worrying” over “unfair” treatment to siblings.  My issue with this claim is really simple: empirical research suggests otherwise.  Research shows that NT siblings are enriched by their lives with their SN sibling, not hampered by it. They are more open and understanding of those who are disabled and more likely to help their peers.  They also harbor no ill will towards their SN sibling for any reason.  Imagine that: NT siblings of SN children RECOGNIZE that they are simply different in what they need and support how things happen at home. They get it and understand it. They also often grow up to help support their siblings in their adult life, making sure they have what they need.  So, why would parents need to harbor this “guilt”?

I’m not a peacekeeper. I don’t try to make everyone happy nor do I care to. I don’t have the time or energy for that. Frankly, I don’t give a rat’s arse what some stranger in the supermarket thinks of us. It doesn’t really affect me if they are that shallow and judgey. We don’t know them. It’s a reflection of them and their character, not us or ours. Our life will go on as usual. I don’t “try not to look bothered.” I’m NOT bothered.  I also will not be a peacekeeper at school. That’s just straight up push-over nonsense.  I will not allow ANYONE to walk all over me. I will not appease them to make them happy. It’s their task to make me happy. Plain and simple. If your school isn’t making you happy, get a lawyer, learn your rights. I also don’t try to keep peace in my family or with my friends. If they can’t respect my views and how I do things, then we will spend our time with someone who accepts us as we are. We won’t be run over by anyone because they are “offended” or upset by something we do. (Thankfully this isn’t anything I really have to deal with.)

Maybe that author is isolated, but I sure as hell am not.  You see, I put effort into my relationships with family and friends to maintain them and keep their value.  Do I compromise myself in the process? No. Just read my last paragraph.  For every one person who has dropped out of our lives we have gained 10 or more who are more than happy to share our lives. My friends and family have all done what they can to learn about my son so that they can support us however they can. We have some real people of value in our lives. I have also found my way into a larger community of people who share my experiences and are also raising an Autistic child (or 2).  I have never felt isolated.  I never will. I also don’t like the author’s assumption that my son isn’t part of the social world. He has friends. He loves people. He’ll chat the ear off anyone he knows. He plays with and shares interests with his friends at school.  We are also very close. We are not “isolated” as if we are two strangers living in the same house. My son will find a way to talk to me.  Communication is not always speech. He’ll write. He’ll draw. He’ll create. He tells me everything. Sorry, no isolation or lack of social interaction here.

Do I hear stupid things in regards to my son being Autistic? Sure. But it’s a teachable moment. Education is the single most powerful tool in the world. I also hear hurtful things about me, my parenting, and even my weight (how I need to gain a few pounds, for the record I’m healthy and fit and at a perfect weight). I get assumptions all the time about how because I’m deaf I should be dumb. Have I heard, “He doesn’t look Autistic…” You betcha. It boils down to the ignorance (meant by the true dictionary definition) of the person making the comment.  They simply do not know or understand.

Is raising an Autistic child stressful? Sure. Just look at how we are treated. Look at how anyone with a disability is treated. Time and time again, day in and day out, we are treated like we are less than human, not worthy to be alive or tended to. We cannot get the help we need, the services we deserve.  But that doesn’t mean it’s unbearable or too much to handle. I don’t think raising an Autistic is that hard, frankly. He’s just another kid. (See here.) Able and capable of doing what all other NT kids can do. We just do things differently. Our routines are different. Our needs are different. It certainly isn’t this down-in-the-pits, oh-woe-is-me, horror.

I do not worry about the future. My son will be just fine. He will live where he chooses to live, be it here or his own home, doing whatever he wants to do with his future. He is well loved by so many. Since we are not isolated in any way, socially or geographically, I have no concerns over anyone being around to lend him a hand when he needs it. This holds true whether or not I am here or not. I know he will be ok. I have confidence and faith in him and our circle. After all, we started the foundation to his own self-determination long ago. The seeds of self-advocacy and independence are well planted. What do I need to worry about?

We don’t "suffer" anything. We enjoy life. We are whole, complete, even content. Is it really that hard to believe?