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. :)

Stepping from Drama Infested Waters

I haven't been on my page or my blog much lately for many reasons (some of which are updates I'll place in another post).  I apologize that I have been largely neglecting the page and blog.  I've been taking a Facebook break over the past few months.

A much needed Facebook break...

I can't even begin to tell you the amount of drama I missed as a result and how much better my life is for it.  (I had people unfriending me for my mere association with people they suddenly took exception with so... Yeah. There's that.)  My personal newsfeed was beginning to look a lot like the tabloids at the check out line of the grocery store: drama, drama, and look more drama!  It was getting to a point where I couldn't keep up and in my efforts to try and keep up and calm people and figure things out some pretty important things were falling by the wayside. Namely grad school, but also it was taking away time with the kiddo and and distracting me at work.  It was a huge source of stress for me.

A total no go for me.

So I stepped back.

Ok, I took a giant leap back.  My Facebook habit has now been broken and I'm ok with that. I post just enough that people know I'm still alive (once a day or so, mostly pictures shared off my Instagram and through my phone) but I really don't read through my newsfeed anymore.  I take a look at a couple of the top stories and move on.  Thankfully my top stories have shifted from the drama infested folks I know to people who matter a little more.  They know who they are since I interact with them almost daily.  That doesn't mean no one else is important (and I don't always comment or like so it may be hard to tell), it's just that Facebook has weeded the worst of them out of my top stories for one reason or another.  This has cleaned up my newsfeed considerably and made returning for periodic check-ins far more manageable.

I really was never one for drama.  If you are unhappy with your life, then change it.  Despite whatever people think, it really is that simple.  The constant griping about hating one's relationship one day and being madly in love the next, the "oh woe is me" left and right, the complaints about not liking one's job/boss/coworker, the posts that were so ridiculous sappy you knew they were fake, etc was really wearing me out.  And you know what? It had to be wearing them out to be so negative.

When did adults become such children?  I just don't get it.  This is behavior I would expect from the kiddos I teach, not adults in their 30s and beyond.  I seriously have days where I think the Kindergarteners act better.  It's really disheartening. 

I'm generally a positive person and try to see the good things.  I don't like misery and certainly won't go looking for it.  My personal page became a place of misery so I had to retreat.  Over the last 4 months of sitting by and watching when I did log in, I've been able to do a lot of thinking and got the opportunity to see who was missing me.  Turns out there are quite a few and you know what?  They can all be found in the top stories section of my newsfeed.  Coincidence? I think not.

I guess Facebook does know what it's doing sometimes.  It may keep people from seeing the page for this blog, but in a way, it's also helping me see the folks I need to see.  My positive friends who understand me, my kiddo, and will go looking for me if I vanish.

As time goes on I slowly start creeping back in and interacting more.  I'm getting a little more free time and things are going extremely well in our corner (update to come).  I promise to be back more soon- over the summer and it promises to be a great one! :)  Thank you for bearing with me, I wouldn't be here if it wasn't for all of you faithfully standing by! <3

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?

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. :)

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.

Watch This Guy Misspell ’Father’ At A Spelling Bee For A Beautiful Reason

I know I couldn’t stop crying.

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.